Vanderbilt University has a new Autism study that they are looking for participants for.
Tuesday, October 30, 2018
New Autism study at Vanderbilt University
I just saw this on Facebook and wanted to share it with everyone.
Vanderbilt University has a new Autism study that they are looking for participants for.
Vanderbilt University has a new Autism study that they are looking for participants for.
Monday, October 29, 2018
So many doctors, so many questions, so many details
Having a diagnosis of Autism Spectrum Disorder is so much more than just 3 words. The spectrum is so broad, and every patient is different. While Autism seems to be a very common diagnosis lately, it wasn't this way even 5 years ago. At the moment, there isn't any specific cause, or even a treatment for Autism. Nobody knows what causes Autism, but it is currently believed that Autism starts in utero. It isn't something that happens to you, something that you suddenly develop. Autism, while it may be hereditary, is something that you are born with, and will stay with you for your entire life. There isn't any cure, and it isn't something that can be simply "out grown". While you can learn to accept and live with it, and have a very full and successful life, Autism never goes away.
There are so many unknowns about the world of Autism, but there is a ton of research being done every single day, at some of the top colleges in the world. Doctors are dedicating their lives to studying and understanding Autism. We are so lucky to be alive during such an exciting time, with all the constant advancements in education. medicine, communication, technology, etc. Back when my cousins were diagnosed with Autism, they weren't lucky enough to have so much information at their fingertips, the way that we do today. Even though we are all still young in age, my children are at a much greater advantage than my cousins were, because they are growing up during a time with some amazing autism education programs, that are helping people all over the world to better understand what my children are going through, and how to help them along the way.
When my husband and I first suspected that our son had Autism, Edward was only 3 years old. At first, I was completely in denial, and kept telling Chris that Edward was fine, and that he was still so little, and just starting to become a little person. Every time we took Edward to the doctor for whatever reason, any time we mentioned that we suspected that Edward might be Autistic, the doctor would glance at Edward, and then tell us that he was completely fine, and there was nothing wrong with him. Serenity was only a few months old at the time, and we were constantly going to "well baby checks", as well as sick visits for Edward. As a baby, Edward had frequent ear infections, and then started coming down with Strep Throat several times a year. By the time Edward was 3 years old, we were living in our third state as a family (my fourth), and had seen a bunch of different doctors each time Edward was sick. When Edward was born, we were lucky enough to have an amazing family doctor; Pappa John, who had been treating Chris' entire family for 30+ years, but being in a new state, we had been trying unsuccessfully to find a new doctor who we liked as much, but just couldn't find anyone who seemed even remotely competent.
Doctor (Pappa) John was the dad that Chris never had growing up, and any time we needed anything at all, John was right there for us. He was so excited to find out that we were pregnant and having a little boy, because he didn't get to see any babies anymore unless one of his current patients gave birth. Pappa John had been practicing medicine for so long, that I believe Chris, Edward and I (as well as Chris' siblings) were John's youngest patients. Pappa John was always there for us, no matter what time it was. A few weeks after Edward was born, I started suffering from serious Postpartum Depression and Anxiety, and Chris had been trying in vain to get a hold of my OBGYN, to get me help. Unfortunately for us, that doctor was completely useless, and instructed us to call a psychiatrist, but otherwise didn't care. Chris immediately made a call to John's office, and the next thing I knew, he was telling me to get in the car because John wanted to see me immediately. John, who ALWAYS had a completely packed schedule and was really hard to get an appointment with sooner than a month out, kicked everyone out of his office, clearing his schedule for the rest of the day, just so he could take care of me. Chris walked me into his office, and John sat there with us, letting me cry, talking to us, and giving us all the advice and help that he possibly could. He even pulled Chris out of work for a couple of weeks, instructing him that he needed to be home with me, to take care of me. Postpartum Depression is such a serious problem, and being a new mom, we had no idea just how badly I was suffering. John didn't want to risk anything happening to me, so he had Chris take off work to stay home with me, and help me with the new baby. Throughout the fist year of Edward's life, any time Edward was sick, or I had any concerns at all, John took care of anything. Even when our insurance changed, and I no longer had coverage, John let me know that any time I needed anything, he wanted me to call him, and that he would see me along with Edward, at all appointments. He didn't care that I didn't have health insurance, and couldn't afford to go see him. John still took care of me, and mare sure that my depression and anxiety were under control. Even after we moved away, I was still able to call or e-mail John any time I needed anything. Edward and I were even lucky enough to be able to go see him while we were back in town for a visit, just before Edward turned 2. When Serenity was born, we had been away from John for almost two years, and realized that it was time for us to finally find a doctor for our kids, and stop jumping around from one urgent care center to the next. We were having a really hard time finding a doctor that we liked, and even after starting to see a doctor who came recommended by a close friend, we still weren't happy because no one measured up to who Pappa John was. No one took care of us like John did. No one was as good. I can't tell you how many times I was snapped at by doctors because they weren't John and didn't care what John had to say, because they were our doctor, not him. I was annoyed, and dreaded every single time I had to take one of our kids to the doctor. But then one day both Edward and Serenity were sick, and the doctor we had been seeing was out of the office for the day, so the receptionist put us in to see one of the other pediatricians in the office, and everything changed! For the fist time since we had left John's office, I FINALLY felt like someone heard me. I felt like this doctor cared, and understood my concerns. The day we mentioned to this new doctor that we thought Edward might suffer from Autism, she immediately agreed with us that it could very well be a possibility, and offered to write him a referral for evaluation. From that day on, our lives completely changed.
Edward was sent to Vanderbilt Children's Hospital for an autism evaluation. We started by seeing a pediatric neurologist, which also turned into seeing an Ear Nose & Throat specialist, Pulmonologist, Gastroenterologist, and a pediatric Psychologist. Edward went thru several different evaluations, tests, ultrasounds, an MRI, EEG, Video EEG, blood tests, etc. Normally, getting an appointment with a pediatric psychologist, is a 6+ month wait, however, because we were going with the specific suspicion of Autism, we were given an option of being put on the waiting list, and waiting at least 6 months before getting a phone call to set an appointment, or if we would like to, Vanderbilt University had a new research study program on Autism, and if we wanted to agree to be a part of the study, the psychologist could see Edward within a 6-8 weeks. It was basically a completely brainless decision. We could either wait forever to get an appointment, or we could cut in line . . . . Gee, real tough decision there! Without even talking the option over with Chris, I immediately agreed to be a part of the research study, and within a few weeks, we had an evaluation appointment set for Edward with Vanderbilt TRIAD.
Vanderbilt TRIAD is Vanderbilt University's Treatment & Research Institute for Autism Spectrum Disorders. Before Edward's evaluation was scheduled, I was instructed to download an app on my phone, which had a bunch of different questionnaires for me to complete about Edward, as well as videos and pictures that they wanted me to take and submit for their panel to evaluate, so that they could determine if there was an actual possibility of Edward being on the spectrum, or if maybe he had some kind of other developmental delay that they could give us some kind of direction on. Over the next several weeks, I answered so many questionnaires and filled out a ton of paperwork. I was answering all kinds of different questions about everything from my toddler's interests to my pregnancy and delivery, as well as some family history. The TRIAD team was very in depth in their assessments and evaluations. When the day finally came for Edward's formal evaluation, we spent over 4 hours at Vanderbilt University with Edward, while the TRIAD team played with him, having a great time, while Chris and I sat talking with the pediatric psychologist, watching our little man play. The room we were in was a large almost daycare type of set up, with one wall that was a huge two-way mirror. Throughout Edward's evaluation, different team members came into the room to play with him. They played catch, did puzzles, danced, ate snacks, colored, blew bubbles, etc. Edward was having the best time, and had no idea that all these adults were actually evaluating him for autism. He was only 3, and probably thought that all those fun people came in to play with and entertain him while Mommy and Daddy were talking to the doctor. In no way did it feel like we were in that evaluation for 4 hours, but it happened. We spent 4 hours watching Edward have a great time playing with all the team members. At one point Serenity, who was about 13 months old at the time, had gotten cranky and was needing a nap, so I decided to step out of the room to feed her, and get her to sleep. The psychologist told me that I was welcome to step into the room on the other side of the mirror if I would like do. It was pretty cool to be on the other side of the mirror, watching the evaluation rather than being in the same room. There was another team member in the room with me, watching and taking notes. As I sat there with Serenity, the the lady who was in there watching, started explaining to me some of the different "testing" they were doing with Edward. At one point they got a bubble gun out, and were blowing bubbles. The lady playing with Edward at the time would shoot some bubbles out of the gun, then stop and watch Edward, waiting for him to run around popping them, then come to her to ask for more. No one was telling Edward what to do, and that he needed to ask for the bubbles, or to make some kind of contact to let the lady know that he wanted more. It was all part of the testing and evaluation, so they could see exactly where Edward was at in comparison to other kids his age.
At the end of Edward's evaluation, the pediatric psychologist told us that there wasn't a single doubt in her mind that Edward is autistic. In talking with her that day, Chris and I learned that she had been working in her field for over 20 years. She wasn't some new lady without a clue as to what she was doing. We had recently been to a few other evaluations at different places, where we were told that there might be a possibility that Edward could be autistic, but they just "weren't sure". He definitely suffered from some kind of development delay, but as for Autism, Edward fit some of the standard criteria, but not all of it. Chris and I mentioned the prior evaluations to the doctor, and she wasn't surprised by the outcome at all. Autism Spectrum Disorder has such a broad range that unless you are specifically dedicated to the study of Autism, it is hard for recognize and diagnose someone. There are so many different aspects, and non one on the spectrum is the same. As we were talking, the doctor asked us a few questions about Serenity, and her age, then mentioned that she would like for us to bring Serenity back when she was 18 months old so that she too could be evaluated because while they were playing with and evaluating Edward, they also noticed a few autism traits in Serenity as well. Chris and I questioned how they could have traits in Serenity so early, because she was barely a year old, and we asked how old a child needed to be to receive a formal autism evaluation. Interestingly enough, the doctor told us that the youngest child she had ever diagnosed was only 14 months old, which at the time, was just a few weeks older than Serenity, and that the early the child receives a diagnosis, the more beneficial it is for the child.
Once Edward and Serenity received their autism diagnoses, so many doors have opened for them. Both kids began receiving speech, and occupational therapy. Edward also received food therapy, and joined a group of kids his same age, for therapy two mornings a week in a preschool type setting. Currently, Edward receives all this services through school, and Serenity is beginning in home Early Intervention through the state and the school district, and as soon as she turns 3, Serenity will join the pre-k program at Edward's school, and receive all of her services there.
I currently only have a paper copy of Edward's autism diagnosis, but I have an electronic copy of Serenity's, so with permission from Chris, I am going to share part of her diagnosis below. I have had a lot of people question my kids' diagnosis, especially Serenity's because she is so young. A lot of people have a hard time understanding how Serenity was possibly diagnosed so young, and don't believe that she actually does suffer from Autism, but instead think that Autism is highly over diagnosed, and that Serenity was somehow put into the Autism category because she might possibly have some type of problem down the road. Chris and I don't agree with that type of thinking at all. We fully trust and believe in our medical team, and know for sure that Serenity is indeed autistic, and that we are definitely doing the right thing by getting our kids all the help they need. We have an amazing team of doctors, teachers, counselors, and various specialists who we are in constant communication with, and because of it, our kids are doing very well, and making improvements every day.
Note:
Not every child's diagnosis will be the same. Autism Spectrum Disorder is such a diverse disorder than each patient is different, and can not in any way be compared to the next. If you suspect that your child may suffer from Autism, please contact your health care provider. You can also visit TRIAD's website for more information on Autism, as well as information about the Vanderbilt University national autism study. There are several other studies available through other universities such as Stanford University, and the Children's Hospital Of Philadelphia (CHOP). Here are a few links that may be beneficial to check out.
Vanderbilt TRIAD
https://vkc.mc.vanderbilt.edu/vkc/triad/research/
Stanford University
https://med.stanford.edu/autism/studies.html
Saint Joseph's University
https://online.sju.edu/graduate-certificates/autism-studies-certifications
Saint Mary's College Notre Dame University, Indiana
https://grad.saintmarys.edu/academic-programs/master-autism-studies
Griffith University
https://www.griffith.edu.au/study/education/autism-studies
Children's Hospital Of Philadelphia
https://www.chop.edu/conditions-diseases/autism-spectrum-disorder
Johns Hopkins University
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/project_restore/research/autism-research/index.html
There are so many unknowns about the world of Autism, but there is a ton of research being done every single day, at some of the top colleges in the world. Doctors are dedicating their lives to studying and understanding Autism. We are so lucky to be alive during such an exciting time, with all the constant advancements in education. medicine, communication, technology, etc. Back when my cousins were diagnosed with Autism, they weren't lucky enough to have so much information at their fingertips, the way that we do today. Even though we are all still young in age, my children are at a much greater advantage than my cousins were, because they are growing up during a time with some amazing autism education programs, that are helping people all over the world to better understand what my children are going through, and how to help them along the way.
When my husband and I first suspected that our son had Autism, Edward was only 3 years old. At first, I was completely in denial, and kept telling Chris that Edward was fine, and that he was still so little, and just starting to become a little person. Every time we took Edward to the doctor for whatever reason, any time we mentioned that we suspected that Edward might be Autistic, the doctor would glance at Edward, and then tell us that he was completely fine, and there was nothing wrong with him. Serenity was only a few months old at the time, and we were constantly going to "well baby checks", as well as sick visits for Edward. As a baby, Edward had frequent ear infections, and then started coming down with Strep Throat several times a year. By the time Edward was 3 years old, we were living in our third state as a family (my fourth), and had seen a bunch of different doctors each time Edward was sick. When Edward was born, we were lucky enough to have an amazing family doctor; Pappa John, who had been treating Chris' entire family for 30+ years, but being in a new state, we had been trying unsuccessfully to find a new doctor who we liked as much, but just couldn't find anyone who seemed even remotely competent.
Doctor (Pappa) John was the dad that Chris never had growing up, and any time we needed anything at all, John was right there for us. He was so excited to find out that we were pregnant and having a little boy, because he didn't get to see any babies anymore unless one of his current patients gave birth. Pappa John had been practicing medicine for so long, that I believe Chris, Edward and I (as well as Chris' siblings) were John's youngest patients. Pappa John was always there for us, no matter what time it was. A few weeks after Edward was born, I started suffering from serious Postpartum Depression and Anxiety, and Chris had been trying in vain to get a hold of my OBGYN, to get me help. Unfortunately for us, that doctor was completely useless, and instructed us to call a psychiatrist, but otherwise didn't care. Chris immediately made a call to John's office, and the next thing I knew, he was telling me to get in the car because John wanted to see me immediately. John, who ALWAYS had a completely packed schedule and was really hard to get an appointment with sooner than a month out, kicked everyone out of his office, clearing his schedule for the rest of the day, just so he could take care of me. Chris walked me into his office, and John sat there with us, letting me cry, talking to us, and giving us all the advice and help that he possibly could. He even pulled Chris out of work for a couple of weeks, instructing him that he needed to be home with me, to take care of me. Postpartum Depression is such a serious problem, and being a new mom, we had no idea just how badly I was suffering. John didn't want to risk anything happening to me, so he had Chris take off work to stay home with me, and help me with the new baby. Throughout the fist year of Edward's life, any time Edward was sick, or I had any concerns at all, John took care of anything. Even when our insurance changed, and I no longer had coverage, John let me know that any time I needed anything, he wanted me to call him, and that he would see me along with Edward, at all appointments. He didn't care that I didn't have health insurance, and couldn't afford to go see him. John still took care of me, and mare sure that my depression and anxiety were under control. Even after we moved away, I was still able to call or e-mail John any time I needed anything. Edward and I were even lucky enough to be able to go see him while we were back in town for a visit, just before Edward turned 2. When Serenity was born, we had been away from John for almost two years, and realized that it was time for us to finally find a doctor for our kids, and stop jumping around from one urgent care center to the next. We were having a really hard time finding a doctor that we liked, and even after starting to see a doctor who came recommended by a close friend, we still weren't happy because no one measured up to who Pappa John was. No one took care of us like John did. No one was as good. I can't tell you how many times I was snapped at by doctors because they weren't John and didn't care what John had to say, because they were our doctor, not him. I was annoyed, and dreaded every single time I had to take one of our kids to the doctor. But then one day both Edward and Serenity were sick, and the doctor we had been seeing was out of the office for the day, so the receptionist put us in to see one of the other pediatricians in the office, and everything changed! For the fist time since we had left John's office, I FINALLY felt like someone heard me. I felt like this doctor cared, and understood my concerns. The day we mentioned to this new doctor that we thought Edward might suffer from Autism, she immediately agreed with us that it could very well be a possibility, and offered to write him a referral for evaluation. From that day on, our lives completely changed.
Edward was sent to Vanderbilt Children's Hospital for an autism evaluation. We started by seeing a pediatric neurologist, which also turned into seeing an Ear Nose & Throat specialist, Pulmonologist, Gastroenterologist, and a pediatric Psychologist. Edward went thru several different evaluations, tests, ultrasounds, an MRI, EEG, Video EEG, blood tests, etc. Normally, getting an appointment with a pediatric psychologist, is a 6+ month wait, however, because we were going with the specific suspicion of Autism, we were given an option of being put on the waiting list, and waiting at least 6 months before getting a phone call to set an appointment, or if we would like to, Vanderbilt University had a new research study program on Autism, and if we wanted to agree to be a part of the study, the psychologist could see Edward within a 6-8 weeks. It was basically a completely brainless decision. We could either wait forever to get an appointment, or we could cut in line . . . . Gee, real tough decision there! Without even talking the option over with Chris, I immediately agreed to be a part of the research study, and within a few weeks, we had an evaluation appointment set for Edward with Vanderbilt TRIAD.
Vanderbilt TRIAD is Vanderbilt University's Treatment & Research Institute for Autism Spectrum Disorders. Before Edward's evaluation was scheduled, I was instructed to download an app on my phone, which had a bunch of different questionnaires for me to complete about Edward, as well as videos and pictures that they wanted me to take and submit for their panel to evaluate, so that they could determine if there was an actual possibility of Edward being on the spectrum, or if maybe he had some kind of other developmental delay that they could give us some kind of direction on. Over the next several weeks, I answered so many questionnaires and filled out a ton of paperwork. I was answering all kinds of different questions about everything from my toddler's interests to my pregnancy and delivery, as well as some family history. The TRIAD team was very in depth in their assessments and evaluations. When the day finally came for Edward's formal evaluation, we spent over 4 hours at Vanderbilt University with Edward, while the TRIAD team played with him, having a great time, while Chris and I sat talking with the pediatric psychologist, watching our little man play. The room we were in was a large almost daycare type of set up, with one wall that was a huge two-way mirror. Throughout Edward's evaluation, different team members came into the room to play with him. They played catch, did puzzles, danced, ate snacks, colored, blew bubbles, etc. Edward was having the best time, and had no idea that all these adults were actually evaluating him for autism. He was only 3, and probably thought that all those fun people came in to play with and entertain him while Mommy and Daddy were talking to the doctor. In no way did it feel like we were in that evaluation for 4 hours, but it happened. We spent 4 hours watching Edward have a great time playing with all the team members. At one point Serenity, who was about 13 months old at the time, had gotten cranky and was needing a nap, so I decided to step out of the room to feed her, and get her to sleep. The psychologist told me that I was welcome to step into the room on the other side of the mirror if I would like do. It was pretty cool to be on the other side of the mirror, watching the evaluation rather than being in the same room. There was another team member in the room with me, watching and taking notes. As I sat there with Serenity, the the lady who was in there watching, started explaining to me some of the different "testing" they were doing with Edward. At one point they got a bubble gun out, and were blowing bubbles. The lady playing with Edward at the time would shoot some bubbles out of the gun, then stop and watch Edward, waiting for him to run around popping them, then come to her to ask for more. No one was telling Edward what to do, and that he needed to ask for the bubbles, or to make some kind of contact to let the lady know that he wanted more. It was all part of the testing and evaluation, so they could see exactly where Edward was at in comparison to other kids his age.
At the end of Edward's evaluation, the pediatric psychologist told us that there wasn't a single doubt in her mind that Edward is autistic. In talking with her that day, Chris and I learned that she had been working in her field for over 20 years. She wasn't some new lady without a clue as to what she was doing. We had recently been to a few other evaluations at different places, where we were told that there might be a possibility that Edward could be autistic, but they just "weren't sure". He definitely suffered from some kind of development delay, but as for Autism, Edward fit some of the standard criteria, but not all of it. Chris and I mentioned the prior evaluations to the doctor, and she wasn't surprised by the outcome at all. Autism Spectrum Disorder has such a broad range that unless you are specifically dedicated to the study of Autism, it is hard for recognize and diagnose someone. There are so many different aspects, and non one on the spectrum is the same. As we were talking, the doctor asked us a few questions about Serenity, and her age, then mentioned that she would like for us to bring Serenity back when she was 18 months old so that she too could be evaluated because while they were playing with and evaluating Edward, they also noticed a few autism traits in Serenity as well. Chris and I questioned how they could have traits in Serenity so early, because she was barely a year old, and we asked how old a child needed to be to receive a formal autism evaluation. Interestingly enough, the doctor told us that the youngest child she had ever diagnosed was only 14 months old, which at the time, was just a few weeks older than Serenity, and that the early the child receives a diagnosis, the more beneficial it is for the child.
Once Edward and Serenity received their autism diagnoses, so many doors have opened for them. Both kids began receiving speech, and occupational therapy. Edward also received food therapy, and joined a group of kids his same age, for therapy two mornings a week in a preschool type setting. Currently, Edward receives all this services through school, and Serenity is beginning in home Early Intervention through the state and the school district, and as soon as she turns 3, Serenity will join the pre-k program at Edward's school, and receive all of her services there.
I currently only have a paper copy of Edward's autism diagnosis, but I have an electronic copy of Serenity's, so with permission from Chris, I am going to share part of her diagnosis below. I have had a lot of people question my kids' diagnosis, especially Serenity's because she is so young. A lot of people have a hard time understanding how Serenity was possibly diagnosed so young, and don't believe that she actually does suffer from Autism, but instead think that Autism is highly over diagnosed, and that Serenity was somehow put into the Autism category because she might possibly have some type of problem down the road. Chris and I don't agree with that type of thinking at all. We fully trust and believe in our medical team, and know for sure that Serenity is indeed autistic, and that we are definitely doing the right thing by getting our kids all the help they need. We have an amazing team of doctors, teachers, counselors, and various specialists who we are in constant communication with, and because of it, our kids are doing very well, and making improvements every day.
Note:
Not every child's diagnosis will be the same. Autism Spectrum Disorder is such a diverse disorder than each patient is different, and can not in any way be compared to the next. If you suspect that your child may suffer from Autism, please contact your health care provider. You can also visit TRIAD's website for more information on Autism, as well as information about the Vanderbilt University national autism study. There are several other studies available through other universities such as Stanford University, and the Children's Hospital Of Philadelphia (CHOP). Here are a few links that may be beneficial to check out.
Vanderbilt TRIAD
https://vkc.mc.vanderbilt.edu/vkc/triad/research/
Stanford University
https://med.stanford.edu/autism/studies.html
Saint Joseph's University
https://online.sju.edu/graduate-certificates/autism-studies-certifications
Saint Mary's College Notre Dame University, Indiana
https://grad.saintmarys.edu/academic-programs/master-autism-studies
Griffith University
https://www.griffith.edu.au/study/education/autism-studies
Children's Hospital Of Philadelphia
https://www.chop.edu/conditions-diseases/autism-spectrum-disorder
Johns Hopkins University
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/project_restore/research/autism-research/index.html
Sunday, October 28, 2018
Going out in public makes you want to crawl into a cave and hide.
As I've gotten older, especially since having children of my own, going out in public gets tough. But when you have autistic kids, public outings get exponentially harder. No matter how much you prepare, or how long you prepare for (hours, days, weeks, etc), there is a good chance that your outing is going to be met with what I call "Autism".
This week, my 5 year old, Edward, was invited to two birthday parties for kids in his classes at school. After speaking to my son's kindergarten teacher, getting her knowledge and advice about the situation, I called both birthday kids' moms and RSVP'd to the parties, making sure that it was ok for not only my son to attend, but also myself and my two year old. Then, I spent all week preparing my kids to attend the parties.
Monday, I took Edward shopping for the first party, while leaving my two year old daughter Serenity, home with Daddy. Shopping went ok, but things started to go down hill when Edward kept wanting to buy things for himself rather than for his friend. He picked out a Super Mario toy and t-shirt for his friend, but then decided that he wanted to get himself a Mario watch. Edward is 5. I'm not sure he even knows what a watch is for, but he has his heart set on getting a Mario watch, and decided to have a meltdown in the middle of Target because even though we had been talking about it for the past two hours, he somehow thought that I was going to buy him the watch he wanted. Trying to get him to focus on the task of buying his friend a birthday gift, and then picking out a gift bag and card was just too much. I finally gave up and decided to just choose a bag myself and head home.
We had a pretty eventful week ahead of us with it being Red Ribbon Week at school, and packed with events. Each day had its own dress up theme, and because Autism, my kid chose not to participate in most of it. Monday was easy because it was wear red day. Cool, red shirt for the day. Check! Tuesday was bright colors & sunglasses day. Edward threw a massive fit Monday afternoon, about wanting to wear his cool PJMasks sunglasses to school the next day. We hadn't seen the glasses since we moved back in May, but I searched the house, and managed to find them. Go figure, Tuesday comes, and the child REFUSES to wear his glasses. Come to find out when I picked him up from school, he had buried the glasses in the bottom of his backpack and didn't even show them to his teachers or anything. I tried to get him to at least show his teacher, but he refused. Wednesday comes, and it is crazy hair/clothes day. A few days prior, I tried to buy colored hair spray at Walmart, just so my kid with the super short hair could participate in crazy hair day at school. But nope, he didn't want to pick out a color, or even consider participating. Thursday was a piece of cake because it was Favorite Sports Team day. Easy Peasy! Our family is Kansas City Chiefs football fans, but our kids outgrew the chiefs gear that we had bought them in the past, but the both have Baltimore Ravins t-shirts that their fairy godmother bought them a couple months ago when Edward's kindergarten class was learning about colors, and had a different color dress up day every day. Being a boy, and obsessed with Thomas the Train and Super Mario, Edward didn't have any purple clothes, but he does have a super awesome fairy godmother who happens to live in Baltimore, and immediately jumped online and sent both kid Ravins t-shirts. Thursday was also school carnival day; aka, the BIGGEST school fundraiser of the year. (More about that in a minute.) Friday finally comes, and it is 50's day at school. The school is celebrating their 60th anniversary, and everyone is dressing in clothes that would have been worn when the school first opened in September 1958. Cool, t-white shirt and jeans it is! Except that my kid doesn't have a plain white t-shirt. He has a white collard shirt. And white shirts with stuff like Batman and Thomas the Train on them. Whatever, white collared shirt works. It wasn't the perfect 50's dress up outfit, but since when does my kid participate in dress up days anyway? Anything that isn't an every day thing for him, he completely refuses to participate in. There was no way I was about to run to the store to buy my kid a plain white t-shirt. He would have worn it again, but everyone knows that white attracts dirt, and is just begging to be stained. Especially by a 5 year old boy. Making a special trip to the store to get a shirt that he didn't actually need just doesn't make sense to me. It's a waste of time, money and energy, and just wasn't happening. My kid fit in enough, and it's not like he cared anyway, so a partial win is good enough for me.
Thursday night's school carnival was pretty fun. It was raining, but we had a good time. However, it's been a rough few days in our house behavior wise, and going out in public was the icing on the cake of insanity. Both kids were super excited to go to the carnival, and had a really hard time waiting the hour and a half between when we picked Edward up from school, and when the carnival finally started. They whined, begged, cried, and fighted the entire time we were home, until we finally got to the carnival. On the way, we had to run to the store so I could get money, because this mommy doesn't carry cash. I only carry plastic, because I feel safer that way, and it keeps me from spending money if when some places don't take credit. The kids weren't interested in making a stop on the way to the carnival and fought the entire two minutes we were in the grocery store. We ran in just so I could buy a bottle of soda to drink at the carnival, and pull some cash out of the bank account. Of all the STUPID things in the world to fight over, my children fought over who got to hold my umbrella while I used the self check out. I had given the umbrella to Serenity when we walked in the door because I had been carrying her, and it was just easier to let her hold it since she had latched on as we walked thru the parking lot. I have no idea why the umbrella turned into a fight, but apparently Edward didn't want Serenity to hold it, and had it in his head that he needed to take it away from her. I was just trying to focus on getting out of the store as quick as I could, and keep my kids from causing a major scene, so with a few "knock it off" and "give it back to your sister" comments, I bought my soda, got some cash, and got us out of the store as fast as I could. However, walking back thru the parking lot was another challenge. Of course after less than a second of being told to stay out of the puddles, Edward purposely jumps in a puddle. Once again, I was carrying Serenity, trying to keep her dry, but she was angry about the whole umbrella situation and squirming in my arms trying to get down, which caused me to drop my cell phone in a puddle while trying to wrangle her into the car, and her car seat. Awesome, wet phone! Thank goodness for a thick case, my phone is completely fine. There was a little bit of water on the outside, but that was it. I got the kids in the car, and it was off to the school we went. A friend of ours was on their way down from about an hour away, to go to the carnival with us, but was running late, and hubby was stuck working, so as usual, it was the Mommy show.
The second we got to the school, Serenity was wanting to run off in one direction, while Edward wanted to go in another. Being autistic, neither of my kids does well in crowds, and they both take off in different directions and need constant supervision. Knowing that the carnival would be crowded since they moved it inside because of the rain, I left Serenity's stroller in the car. Bad idea!!! We were inside for less than 5 minutes before I was in over my head, and decided to head back outside to the car, to get the stroller. I have to say, I absolutely LOVE Edward's principal. She is the sweetest lady in the world! This woman knows every single student in the school, and I believe their parents as well. I was told that she studies the computer before school starts, and memorizes everyone's names. I was shocked a few days into the school year when I dropped Edward off and she greeted him by name. We had only lived in this town for a few months, and it was only the third day of school and the principal already knew my kid. My first thought was "great, what has my little demon done now?!" I went to the same school for 9 years, and I'm pretty sure that for at least the first 3 years the principal had no idea who I was. As far as I know, the principal only got to know my family after my mom became part of the planning team to turn the school from being a regular elementary school, to a performing arts academy. My mom spent months in meetings with the principal and other teacher and parent team members, so I'm pretty sure that's what got our family so well known. But there was no way that on the third day of school the principal had any clue that I even existed. But this principal, she's amazing! She knows everyone, and makes herself super accessible. When we got to the school for the carnival, she was standing right inside the door, greeting everyone, and immediately noticed my struggle with Serenity. When we went to head back outside to get the stroller, she asked if we were leaving already, and I told her I was just going to get the stroller. Being a special needs parent, she knows my family situation very well, as she's been in multiple meetings with us as we get Edward's IEP written. She immediately offered to watch Edward for me, and grabbed him, sitting down on a bench to hug on him and give him a all her love and attention while I dealt with Serenity. That principal is one of my favorite people in the world right now. I wish I could move her into our house to help with the kids. She's so patient, and loves every kid at the school. One day last week Edward forgot his backpack and I didn't know it until he was getting out of the car to go to class. I had to run back home for his backpack, and then run it back to the school. When I walked into the office, the principal immediately knew who I was, who my kid was, exactly where to take his backpack, and was happy to help. The week prior, I had to pick Edward up early one day, to take him to the doctor. I was in a hurry and not paying attention when I walked into the office with Serentiy. I saw a few ladies standing behind a desk, but wasn't paying attention to who they were. I just told them that I needed to pick my son up for a doctor appointment, and immediately one of the ladies spoke up. It took me a second before I realized who it was, but that amazing principal knew who I was, who my son was, and exactly who's class he was in and where they were. Edward switches between a few teachers every day, but that amazing woman knows everything. I barely know who his teachers are, but his principal knows his every move. She's totally amazing! So anyway, back to the stroller situation. I got Serenity in her stroller and headed back into the carnival, thanking the principal for her help. The kids and I went into the cafeteria where they had different carnival games and candy for prizes. Having Serenity corralled in the stroller made everything so much easier! Before being in the stroller, she was all over the place, trying to steal candy from the prize buckets, and throwing a tantrum as soon as I stopped her. I was able to help Edward play games while Serenity chilled in her stroller, watching Youtube Kids on my phone. She was content to watch videos and take turns playing games. Serenity's stroller and Youtube are seriously my life savers! Next, we moved onto the gym where they had bounce houses. Hello terror children! Serenity was grouchy having not taken a nap, and as soon as she saw the bounce houses, she was no longer content to sit in her stroller. I let her get out and watched the kids run around with all the other kids, going between the four bounce houses in the gym. Little did I know, that while looking back and forth between my kids, another teacher had caught Serenity trying to escape the gym door. Thank goodness her attempt was foiled, but then I got the fight of my life trying to get her back into the stroller, AND convince Edward that it was time to go and let's go try the cake walk. Serenity was pretty ticked off, and throwing a massive fit. She had also been trying to strip her clothes off while in the bounce houses. Child does NOT like to wear clothes, and she was angry that I kept catching her trying to pull her pants off, and making her put them back on. Fighting her over staying dressed and then over sitting in her stroller was a fun spectator event. Once again, I was THAT mom. I got us out of the gym as fast as I could and then corralled Serenity the best I could for a few minutes while letting Edward do the cake walk. Unfortunately, he didn't win (he was on the number next to the winner a couple times), but I fixed his disappointment with the promise of going to see Daddy at work and getting a Happy Meal. Bribes don't always work with my kids, but every so often the promise of a happy meal and chocolate milk will fix a tough situation. Once getting out of the school (we lasted a whole hour at the carnival; it was a 4 hour event), we met up with our friend who had come to help with the kids, and went to visit Chris at work.
Edward and Serenity LOVE visiting Daddy at work. Ever since we moved back in May, Chris works crazy hours. He is only required to work 50 hours a week, but for the last few months it's been more like 80-100. A lot of the time I feel like a single mom, which seems completely unfair on so many levels. I'm not at all single, I am actually very happily married. Buy my husband works really hard to take care of us, and his job isn't easy. They've had A LOT of drama at work, and Chris has been tasked with fixing problem after problem, so he's working crazy hours, and is usually only home to sleep. Things are FINALLY starting to calm down lately, and he's now got his days off back, so we actually get to spend time together as a family, but other than his days off on Monday and Tuesday, the kids don't get to see much of him. Chris works 3pm-1am, so the kids hardly see him awake. Once a week or so, we'll go visit Daddy at work, and have dinner as a family, and both Edward and Serenity absolutely love it! They are so thrilled to see their Daddy that they jump into his arms, and love on him until it's time to come home again. Having come from the school carnival, both kids were sugared up from all the candy they were given, and Serenity was grouchy and in terror mode, so our dinner with Daddy of course involved Serenity trying to strip her clothes off multiple times. How would you like to explain to your employees why your two year old is running around half naked? Lucky for us, Chris' coworkers all know who we are and that our kids are autistic, and they've been around us enough to more or less laugh off our kids' crazy antics. We just roll our eyes at Serenity's stripping attempts and make some joke comment about how she'll be paying for college in the future. It's always amusing to see other people's reactions to our jokes. Chris and I have a pretty twisted sense of humor. Every so often, we'll make a totally off the wall comment, just because it's funny, and we know it'll shock everyone around us. It's how we entertain ourselves. Serenity's current obsession with stripping her clothes off is just too perfect to not joke about. Especially after a long day of fighting over keeping her clothed.
By the time we got home from the school carnival, I was beyond exhausted and ready to be done for the week. It was only Thursday night, but to me it felt like the week had lasted over a month. I was physically, mentally and emotionally drained, and just wanted to go to bed and sleep for a week straight. At the moment, I was less than thrilled about it being Thursday night, and having to get the kids ready for bed, then stay awake getting Edward ready for school the next morning. I had clothes to find and set out, a behavior chart to sign, and a lunch to pack for the next day. Plus, every night, when I get Edward's stuff ready for the next day, I also have to check to make sure that he still has two extra sets of clothes in his backpack, just in case he has an accident or something at school, and needs a clean outfit to change into. I was seriously debating how horrible it would be if I were to let Edward skip school on Friday on account of Mommy is exhausted and needs a break.
After school on Friday, I took both kids to Walmart to pick out the gift for the second party. Talk about a nightmare! This time, Edward was completely ok, but Serenity decided that she was going to be the child to have a meltdown. Somehow she had it in her head that the toys we were picking out for the birthday boy, were for her. She was sitting in the shopping cart throwing a fit because she wanted to play with the toys, and my son was walking along side the cart telling her "NO!!! This isn't for you!" Once again, I was THAT mom! The mom walking thru Walmart, with one kid throwing a tantrum because she wants a toy that she can't have, and a second child rudely, loudly commenting to his sister about how the toys aren't for her, she can't touch them, and to "Stop it, Sissy!" Two loud, crying, fighting kids in Walmart, causing a scene. I was so agitated and trying to keep my sanity in check, while trying to calm both kids, that I decided that it would be easier if I just bought them both a cheap toy. That way everyone had a toy to play with, and the insanity could end . . . Nope! Unfortunately for me, buying each kid their own toy didn't end the insanity at all. Luckily, it didn't make things any worse, but it definitely didn't help.
Saturday finally comes, and the first birthday party is a few hours away. Halloween is in a few days, so of course the parents are having a costumer party for their kid. Cool, costumes are always fun! I have no problem with going to a costume party. My kids picked out their costumes weeks ago, and everything I needed was already delivered by amazon. Score! We are ready! Or so I thought . . . My autistic 5 year old is having the same meltdown he's had for the last 3 years; he doesn't want to put on the costume that I spent so much money on. When he was 2, I ordered him an adorable Olaf costu me. It's STILL sitting in the closet, never been worn. When he was 3 the child insisted on a pirate costume. When I tried to get him dressed for Halloween, he REFUSED to put it on. Then last year, it happened again with the Flash costume the child begged me for. I'm not too surprised that this nightmare is happening AGAIN this year, but I'm annoyed that once again, I spent money on the costume that my kid begged for, and just HAD to have. But as usual, the child refuses to even touch the thing. NOT COOL!!! My husband is a saint, and the last few years has managed to force our son into his costume, and although he's very angry at the time, within a half hour, our son calms down, realizes that wearing his costume means that strangers will give him free candy when he knocks on their door and says "trick or treat", and for the rest of the night, he is completely thrilled to be wearing the costume wanted. I'm REALLY hoping for hubby to have the same luck this year, as he's had in the past, because I have no idea what I'll do if our son continues the costume fight. But for now, there won't be a Mario costume worn to the birthday party. My son had dresses himself for the day, wearing jeans and a Thomas the Train t-shirt. I argued with him, and at the suggestion of hubby, threatened to accidentally spill a bottle of water on his shirt, in order to at least get him to change into a Mario t-shirt. The threat of water was enough, and miraculously, the child let me change him into his Super Mario t-shirt. Small win for Mommy this time! In the mean time, my two year old is happily all decked out in her favorite Minnie Mouse dress, black tights, and the sparkly mouse ears that I ordered a few weeks ago. We only rarely have problems dressing our daughter. She usually doesn't like to wear clothes, but doesn't often fight us when it's time to get dressed. Especially if we put her in her favorite Mickey or Minnie Mouse clothes. She was thrilled to be wearing her costume, and couldn't wait to go to the party. But in the process of getting ready to go, Edward was fighting us about what to wear, and then started saying "I'm sick! I stay home!" Hello anxiety!
I think most autistic kids also suffer from anxiety. Neither of my kids does well in crowds, or new/different places and situations. We don't necessarily have a routine the way a lot of other autistic families do, but we do tend to do a lot of the same things with our kids, and only go certain places, because our kids can't handle anything new or different. If we go out to eat, we have our favorite places that we go to, where we've eaten several times prior, and our kids feel safe and comfortable being. We don't like to go to a lot of new places because the unfamiliar setting overwhelms our kids, which causes tantrums, meltdowns, and crazy behavior. Over the last two years, we've randomly added new destinations to our outings, and with the help of cell phones, tablets, and kids youtube kids, Edward and Serenity have survived with only slight behavior issues. But this week has been one thing after the next for us, and a lot of it has been new adventures. Even though the kids were super excited to go to birthday parties, they were both completely overwhelmed. I spent all week dreading going to the parties, not looking forward to the upcoming tantrums and meltdowns. Because my kids are autistic and don't do well in new environments, it is a lot easier on all of us, if we just stay home and hang out as a family. Our home is a safe environment for our family. It is completely drama free, and we have everything set up to where we are perfectly comfortable with the kids running around playing together. We keep the kitchen and bathroom off limits, but other wise the kids are able to play as they'd like anywhere in the house. We have minimal furniture just because it makes things easier for us. There is less to clean, and fewer things that can potentially hurt the kids. The only furniture in the kids' bedrooms are their beds and a toy box. It's all they need. I keep all their clothes hung and folded in their closets, and I keep the closet doors closed and secured with baby knobs. The kids can run and play anywhere in the house that they want, and it is completely safe for them. I never have to worry about someone running into a dresser and hitting their head, or pulling a table with a heavy TV on top of it, down on top of them. Our TVs are wall mounted, along with the video game consoles and cable boxes. Our home is the one place that we don't have to worry about our kids being. The doors are locked and alarmed, and the windows don't open. Our kids know that they are safe, and can play as they please. We don't have many rules, so the kids can enjoy being themselves. Being home is easy, and enjoyable. But then a monkey wrench is thrown into our lives in the form of birthday party invitations, and our kids' lives are completely turned upside down.
We had a great time at the birthday parties this weekend, but it definitely didn't come without hiccups. First we had the costume/clothes battle. Edward wanted nothing to do without someone out of the norm. Then we had the anxiety of not wanting to leave the house. Next came the immediate meltdowns at the parties.
Party #1:
We get out of the car, and Serenity sees the bounce house in the backyard. As I'm trying to help Edward out of the car, Serenity starts taking off across the front yard of the house we had just arrived at, wanting to go take over the bounce house. I had never met the birthday kid, his parents, or anyone else at the party, and within seconds of arrival, my two year old has it in her head that she's going to announce our presence by sneak attack invading the backyard and taking up residence in the bounce house. I was able to catch up to her, and scoop Serenity into my arms, and politely enter the home to meet the birthday kid's mom and grandma. Luckily, when I had called to RSVP earlier in the week, when I mentioned to the mom that my kids are autistic, she was thrilled to hear it and excitedly told me that her kid is too. It was honestly such a relief to be among people who actually are going thru the exact same thing as we are, and completely understand my kids' quirks. As soon as we entered the party house yesterday, Edward immediately threw himself on the floor, cowering in a corner. His friend's grandma immediately sat down next to him, talked to him super calm, and rubbed his back for a few minutes until Edward opened up, and joined the other kids to play. In the mean time, Serenity had been offered food, and like the little piggy she is, she was eager to dive into cupcakes, cookies, candy, and other junk food. If you didn't know better, you might think that I starve that child. I don't, we just don't give our kids very munch junk food. Their junk intake is extremely limited, so when they are offered something that Chris and I only rarely give them, our kids dive in like they're starving to death. It's almost amusing to watch. From that moment, things were going well. Edward almost had a potty accident at the party, until I noticed his hiding and trying to hold it in, and picked him, running him to the bathroom. We've been working on potty training since around June, but things haven't gotten any easier. Every day is a potty challenge. Some times Edward is fine and will go without any accidents, but others, he just doesn't care, and it's one accident after the next. Yesterday, was an ok day. He almost had an accident at the party, but I saved the day, and he was able to go right back to playing with his friends. He LOVED jumping in the bouncy house with the other kids, and even played on the swing set with Serenity, which turned out to be Serenity's favorite thing to do. Once she discovered the swing set, nothing else mattered. At one point, while playing in the bounce house with the other kids, one of the parents called over to me to tell me that Edward had gotten hurt. He somehow hurt his ankle, but after a few minutes of crying, and seeing all the other kids having a great time, Edward jumped up and went back to playing. We stayed at the party for about an hour, and as soon as I noticed the kids attitudes starting to change, I quickly corralled them, went and thanked the hosts for inviting us, and left as quickly as we could. As we were walking across the lawn to the car, I hear Edward whining, saying that he's stinky and needs new underwear. Joy!!! It's a good thing we were getting in the car because I would have hated to have to figure out a way to sneak my kid out of there without anyone noticing the stench coming from my five year old.
Party #2:
The second birthday part of the weekend was at the local gymnastics center. Walking into the party, we had zero issues. There wasn't any costume theme, or anything, so all I had to deal with earlier today, was the excitement of wanting to be at the party all day, when the party didn't start until 5pm. getting to the party, the kids were super excited to seen a huge room with padded mats and two huge bounce houses. SCORE!!! I was thrilled, thinking this was going to be a cake walk. The mom in charge saw us and came over to introduce herself. We got to talking, and one of her kids is autistic too. Turns out, this mom is also a teacher, and offers to help me with anything I need, answer any questions, anything at all. I love it!!! Once again, I don't have to explain my kids' quirks to anyone. This is awesome!!! 15 minutes later, Serenity has smelled pizza and sniffed out the kitchen where the food was, so she was sitting there eating her heart out, and I see Edward coming across the other room toward us, with a panicked look on his face.. "Mommy, my clothes are wet!" Great! Freaking fantastic!!! We've been at this party full of people we don't know for a whole 15 minutes, and Edward has an accident. I hurry Serenity along, helping her scarf down her pizza, quickly run to the host mom and tell her that Edward had an accident, so I'm running him home to change and we'll be back in about ten minutes or so. She was totally nice about it. We even talked about it when I got back with the kids. I seriously love that mom! She was the nicest, most friendly lady I've met in the longest time. The rest of the party went off without a hitch, and my kids had a blast! As usual, Edward had zero interest in presents, cake, or anything else. He just wanted to play in the bounce houses, so I let him do it. Serenity ate, and ran around playing, just like she does at home. Altogether, I think we were at that party for an hour and a half. The kids had the best time, and were exhuasted and pretty much ready for bed when we got home. They whined a little bit, ate some chicken nuggets, and happily went to bed without a fight. It was the easiest bedtime I've ever experienced with them!
All in all, it was a fun week. I'm sad that it is now midnight Sunday night, and I now need to get Edward's school stuff ready for tomorrow, and start another week. I almost feel like I didn't even get a weekend to recover from this past week, and now I have to do it all over again. Plus, Halloween is on Wednesday. Oddly, Edward doesn't have school on Wednesday, so that should be interesting. Personally, I think it would be better to not have school the day AFTER Halloween, but it's not my decision, so whatever. Free candy day is just a few days away, so I'll survive. Plus, when Chris gets off work tonight, he doesn't have to go back until Wednesday morning, and then he'll be off early to go trick or treating with us. It's going to be another busy, but fun week.
Sorry this got so long, but I'm trying to make it a point to share our autistic life with everyone. Our life isn't perfect or easy by any means. A lot of days are hard and often messy. Autism is definitely not a walk in the park. It can be extremely challenging at times, but also fun. This week has been really challenging for our family, but we survived it, and actually had a really good time. When things get rough, I may cry and want to rip my hair out, but at the end of the day, it's just a tough day, not a bad life, and everything is always ok in the end. After all, they do say that "Things are ALWAYS ok in the end. If it's not ok, then it's not the end." You just have to take things as they come, and trudging on. Trust me, I'm not a saint at all. Just a couple days ago I had a massive anxiety attack, and cried for hours. Poor Chris left work early to come to be with me and talk me thru it. He's my rock, and the one person that I can always count on for everything. He always makes sure that everything is ok, and keeps me going when all I want do is just give up. I never wanted to be a special needs parent. It's actually the one thing that I knew I NEVER wanted, and prayed to never experience. But obviously, God has other plans for me, and gave me two very different, very autistic kids. Our life is definitely an adventure, but I do really love it. My husband and kids are my absolute favorite people in the entire world. and there isn't anything that I wouldn't do for them. We have our challenges, just like everybody else. The kids make me completely crazy. But then they snuggle up with me and give me hugs and kisses, telling me that they love me so much. One of my favorite things lately is Edward giving me a hug and kiss and telling me "I love you in the morning!" It's the cutest thing ever and completely melts my heart. My kids might be a handful, but I wouldn't trade them for the world.
Again, sorry this is so long, I just want to be able to be completely honest and share all the struggles with you that we are going thru. I'm going to try my best to keep future blogs shorter. I'll also be sharing some other autism blogs that I think are inspirational and have a good message. If you know of anything that you think that my family, or others could benefit from, please feel free to share in the comments.
This week, my 5 year old, Edward, was invited to two birthday parties for kids in his classes at school. After speaking to my son's kindergarten teacher, getting her knowledge and advice about the situation, I called both birthday kids' moms and RSVP'd to the parties, making sure that it was ok for not only my son to attend, but also myself and my two year old. Then, I spent all week preparing my kids to attend the parties.
Monday, I took Edward shopping for the first party, while leaving my two year old daughter Serenity, home with Daddy. Shopping went ok, but things started to go down hill when Edward kept wanting to buy things for himself rather than for his friend. He picked out a Super Mario toy and t-shirt for his friend, but then decided that he wanted to get himself a Mario watch. Edward is 5. I'm not sure he even knows what a watch is for, but he has his heart set on getting a Mario watch, and decided to have a meltdown in the middle of Target because even though we had been talking about it for the past two hours, he somehow thought that I was going to buy him the watch he wanted. Trying to get him to focus on the task of buying his friend a birthday gift, and then picking out a gift bag and card was just too much. I finally gave up and decided to just choose a bag myself and head home.
We had a pretty eventful week ahead of us with it being Red Ribbon Week at school, and packed with events. Each day had its own dress up theme, and because Autism, my kid chose not to participate in most of it. Monday was easy because it was wear red day. Cool, red shirt for the day. Check! Tuesday was bright colors & sunglasses day. Edward threw a massive fit Monday afternoon, about wanting to wear his cool PJMasks sunglasses to school the next day. We hadn't seen the glasses since we moved back in May, but I searched the house, and managed to find them. Go figure, Tuesday comes, and the child REFUSES to wear his glasses. Come to find out when I picked him up from school, he had buried the glasses in the bottom of his backpack and didn't even show them to his teachers or anything. I tried to get him to at least show his teacher, but he refused. Wednesday comes, and it is crazy hair/clothes day. A few days prior, I tried to buy colored hair spray at Walmart, just so my kid with the super short hair could participate in crazy hair day at school. But nope, he didn't want to pick out a color, or even consider participating. Thursday was a piece of cake because it was Favorite Sports Team day. Easy Peasy! Our family is Kansas City Chiefs football fans, but our kids outgrew the chiefs gear that we had bought them in the past, but the both have Baltimore Ravins t-shirts that their fairy godmother bought them a couple months ago when Edward's kindergarten class was learning about colors, and had a different color dress up day every day. Being a boy, and obsessed with Thomas the Train and Super Mario, Edward didn't have any purple clothes, but he does have a super awesome fairy godmother who happens to live in Baltimore, and immediately jumped online and sent both kid Ravins t-shirts. Thursday was also school carnival day; aka, the BIGGEST school fundraiser of the year. (More about that in a minute.) Friday finally comes, and it is 50's day at school. The school is celebrating their 60th anniversary, and everyone is dressing in clothes that would have been worn when the school first opened in September 1958. Cool, t-white shirt and jeans it is! Except that my kid doesn't have a plain white t-shirt. He has a white collard shirt. And white shirts with stuff like Batman and Thomas the Train on them. Whatever, white collared shirt works. It wasn't the perfect 50's dress up outfit, but since when does my kid participate in dress up days anyway? Anything that isn't an every day thing for him, he completely refuses to participate in. There was no way I was about to run to the store to buy my kid a plain white t-shirt. He would have worn it again, but everyone knows that white attracts dirt, and is just begging to be stained. Especially by a 5 year old boy. Making a special trip to the store to get a shirt that he didn't actually need just doesn't make sense to me. It's a waste of time, money and energy, and just wasn't happening. My kid fit in enough, and it's not like he cared anyway, so a partial win is good enough for me.
Thursday night's school carnival was pretty fun. It was raining, but we had a good time. However, it's been a rough few days in our house behavior wise, and going out in public was the icing on the cake of insanity. Both kids were super excited to go to the carnival, and had a really hard time waiting the hour and a half between when we picked Edward up from school, and when the carnival finally started. They whined, begged, cried, and fighted the entire time we were home, until we finally got to the carnival. On the way, we had to run to the store so I could get money, because this mommy doesn't carry cash. I only carry plastic, because I feel safer that way, and it keeps me from spending money if when some places don't take credit. The kids weren't interested in making a stop on the way to the carnival and fought the entire two minutes we were in the grocery store. We ran in just so I could buy a bottle of soda to drink at the carnival, and pull some cash out of the bank account. Of all the STUPID things in the world to fight over, my children fought over who got to hold my umbrella while I used the self check out. I had given the umbrella to Serenity when we walked in the door because I had been carrying her, and it was just easier to let her hold it since she had latched on as we walked thru the parking lot. I have no idea why the umbrella turned into a fight, but apparently Edward didn't want Serenity to hold it, and had it in his head that he needed to take it away from her. I was just trying to focus on getting out of the store as quick as I could, and keep my kids from causing a major scene, so with a few "knock it off" and "give it back to your sister" comments, I bought my soda, got some cash, and got us out of the store as fast as I could. However, walking back thru the parking lot was another challenge. Of course after less than a second of being told to stay out of the puddles, Edward purposely jumps in a puddle. Once again, I was carrying Serenity, trying to keep her dry, but she was angry about the whole umbrella situation and squirming in my arms trying to get down, which caused me to drop my cell phone in a puddle while trying to wrangle her into the car, and her car seat. Awesome, wet phone! Thank goodness for a thick case, my phone is completely fine. There was a little bit of water on the outside, but that was it. I got the kids in the car, and it was off to the school we went. A friend of ours was on their way down from about an hour away, to go to the carnival with us, but was running late, and hubby was stuck working, so as usual, it was the Mommy show.
The second we got to the school, Serenity was wanting to run off in one direction, while Edward wanted to go in another. Being autistic, neither of my kids does well in crowds, and they both take off in different directions and need constant supervision. Knowing that the carnival would be crowded since they moved it inside because of the rain, I left Serenity's stroller in the car. Bad idea!!! We were inside for less than 5 minutes before I was in over my head, and decided to head back outside to the car, to get the stroller. I have to say, I absolutely LOVE Edward's principal. She is the sweetest lady in the world! This woman knows every single student in the school, and I believe their parents as well. I was told that she studies the computer before school starts, and memorizes everyone's names. I was shocked a few days into the school year when I dropped Edward off and she greeted him by name. We had only lived in this town for a few months, and it was only the third day of school and the principal already knew my kid. My first thought was "great, what has my little demon done now?!" I went to the same school for 9 years, and I'm pretty sure that for at least the first 3 years the principal had no idea who I was. As far as I know, the principal only got to know my family after my mom became part of the planning team to turn the school from being a regular elementary school, to a performing arts academy. My mom spent months in meetings with the principal and other teacher and parent team members, so I'm pretty sure that's what got our family so well known. But there was no way that on the third day of school the principal had any clue that I even existed. But this principal, she's amazing! She knows everyone, and makes herself super accessible. When we got to the school for the carnival, she was standing right inside the door, greeting everyone, and immediately noticed my struggle with Serenity. When we went to head back outside to get the stroller, she asked if we were leaving already, and I told her I was just going to get the stroller. Being a special needs parent, she knows my family situation very well, as she's been in multiple meetings with us as we get Edward's IEP written. She immediately offered to watch Edward for me, and grabbed him, sitting down on a bench to hug on him and give him a all her love and attention while I dealt with Serenity. That principal is one of my favorite people in the world right now. I wish I could move her into our house to help with the kids. She's so patient, and loves every kid at the school. One day last week Edward forgot his backpack and I didn't know it until he was getting out of the car to go to class. I had to run back home for his backpack, and then run it back to the school. When I walked into the office, the principal immediately knew who I was, who my kid was, exactly where to take his backpack, and was happy to help. The week prior, I had to pick Edward up early one day, to take him to the doctor. I was in a hurry and not paying attention when I walked into the office with Serentiy. I saw a few ladies standing behind a desk, but wasn't paying attention to who they were. I just told them that I needed to pick my son up for a doctor appointment, and immediately one of the ladies spoke up. It took me a second before I realized who it was, but that amazing principal knew who I was, who my son was, and exactly who's class he was in and where they were. Edward switches between a few teachers every day, but that amazing woman knows everything. I barely know who his teachers are, but his principal knows his every move. She's totally amazing! So anyway, back to the stroller situation. I got Serenity in her stroller and headed back into the carnival, thanking the principal for her help. The kids and I went into the cafeteria where they had different carnival games and candy for prizes. Having Serenity corralled in the stroller made everything so much easier! Before being in the stroller, she was all over the place, trying to steal candy from the prize buckets, and throwing a tantrum as soon as I stopped her. I was able to help Edward play games while Serenity chilled in her stroller, watching Youtube Kids on my phone. She was content to watch videos and take turns playing games. Serenity's stroller and Youtube are seriously my life savers! Next, we moved onto the gym where they had bounce houses. Hello terror children! Serenity was grouchy having not taken a nap, and as soon as she saw the bounce houses, she was no longer content to sit in her stroller. I let her get out and watched the kids run around with all the other kids, going between the four bounce houses in the gym. Little did I know, that while looking back and forth between my kids, another teacher had caught Serenity trying to escape the gym door. Thank goodness her attempt was foiled, but then I got the fight of my life trying to get her back into the stroller, AND convince Edward that it was time to go and let's go try the cake walk. Serenity was pretty ticked off, and throwing a massive fit. She had also been trying to strip her clothes off while in the bounce houses. Child does NOT like to wear clothes, and she was angry that I kept catching her trying to pull her pants off, and making her put them back on. Fighting her over staying dressed and then over sitting in her stroller was a fun spectator event. Once again, I was THAT mom. I got us out of the gym as fast as I could and then corralled Serenity the best I could for a few minutes while letting Edward do the cake walk. Unfortunately, he didn't win (he was on the number next to the winner a couple times), but I fixed his disappointment with the promise of going to see Daddy at work and getting a Happy Meal. Bribes don't always work with my kids, but every so often the promise of a happy meal and chocolate milk will fix a tough situation. Once getting out of the school (we lasted a whole hour at the carnival; it was a 4 hour event), we met up with our friend who had come to help with the kids, and went to visit Chris at work.
Edward and Serenity LOVE visiting Daddy at work. Ever since we moved back in May, Chris works crazy hours. He is only required to work 50 hours a week, but for the last few months it's been more like 80-100. A lot of the time I feel like a single mom, which seems completely unfair on so many levels. I'm not at all single, I am actually very happily married. Buy my husband works really hard to take care of us, and his job isn't easy. They've had A LOT of drama at work, and Chris has been tasked with fixing problem after problem, so he's working crazy hours, and is usually only home to sleep. Things are FINALLY starting to calm down lately, and he's now got his days off back, so we actually get to spend time together as a family, but other than his days off on Monday and Tuesday, the kids don't get to see much of him. Chris works 3pm-1am, so the kids hardly see him awake. Once a week or so, we'll go visit Daddy at work, and have dinner as a family, and both Edward and Serenity absolutely love it! They are so thrilled to see their Daddy that they jump into his arms, and love on him until it's time to come home again. Having come from the school carnival, both kids were sugared up from all the candy they were given, and Serenity was grouchy and in terror mode, so our dinner with Daddy of course involved Serenity trying to strip her clothes off multiple times. How would you like to explain to your employees why your two year old is running around half naked? Lucky for us, Chris' coworkers all know who we are and that our kids are autistic, and they've been around us enough to more or less laugh off our kids' crazy antics. We just roll our eyes at Serenity's stripping attempts and make some joke comment about how she'll be paying for college in the future. It's always amusing to see other people's reactions to our jokes. Chris and I have a pretty twisted sense of humor. Every so often, we'll make a totally off the wall comment, just because it's funny, and we know it'll shock everyone around us. It's how we entertain ourselves. Serenity's current obsession with stripping her clothes off is just too perfect to not joke about. Especially after a long day of fighting over keeping her clothed.
By the time we got home from the school carnival, I was beyond exhausted and ready to be done for the week. It was only Thursday night, but to me it felt like the week had lasted over a month. I was physically, mentally and emotionally drained, and just wanted to go to bed and sleep for a week straight. At the moment, I was less than thrilled about it being Thursday night, and having to get the kids ready for bed, then stay awake getting Edward ready for school the next morning. I had clothes to find and set out, a behavior chart to sign, and a lunch to pack for the next day. Plus, every night, when I get Edward's stuff ready for the next day, I also have to check to make sure that he still has two extra sets of clothes in his backpack, just in case he has an accident or something at school, and needs a clean outfit to change into. I was seriously debating how horrible it would be if I were to let Edward skip school on Friday on account of Mommy is exhausted and needs a break.
After school on Friday, I took both kids to Walmart to pick out the gift for the second party. Talk about a nightmare! This time, Edward was completely ok, but Serenity decided that she was going to be the child to have a meltdown. Somehow she had it in her head that the toys we were picking out for the birthday boy, were for her. She was sitting in the shopping cart throwing a fit because she wanted to play with the toys, and my son was walking along side the cart telling her "NO!!! This isn't for you!" Once again, I was THAT mom! The mom walking thru Walmart, with one kid throwing a tantrum because she wants a toy that she can't have, and a second child rudely, loudly commenting to his sister about how the toys aren't for her, she can't touch them, and to "Stop it, Sissy!" Two loud, crying, fighting kids in Walmart, causing a scene. I was so agitated and trying to keep my sanity in check, while trying to calm both kids, that I decided that it would be easier if I just bought them both a cheap toy. That way everyone had a toy to play with, and the insanity could end . . . Nope! Unfortunately for me, buying each kid their own toy didn't end the insanity at all. Luckily, it didn't make things any worse, but it definitely didn't help.
Saturday finally comes, and the first birthday party is a few hours away. Halloween is in a few days, so of course the parents are having a costumer party for their kid. Cool, costumes are always fun! I have no problem with going to a costume party. My kids picked out their costumes weeks ago, and everything I needed was already delivered by amazon. Score! We are ready! Or so I thought . . . My autistic 5 year old is having the same meltdown he's had for the last 3 years; he doesn't want to put on the costume that I spent so much money on. When he was 2, I ordered him an adorable Olaf costu me. It's STILL sitting in the closet, never been worn. When he was 3 the child insisted on a pirate costume. When I tried to get him dressed for Halloween, he REFUSED to put it on. Then last year, it happened again with the Flash costume the child begged me for. I'm not too surprised that this nightmare is happening AGAIN this year, but I'm annoyed that once again, I spent money on the costume that my kid begged for, and just HAD to have. But as usual, the child refuses to even touch the thing. NOT COOL!!! My husband is a saint, and the last few years has managed to force our son into his costume, and although he's very angry at the time, within a half hour, our son calms down, realizes that wearing his costume means that strangers will give him free candy when he knocks on their door and says "trick or treat", and for the rest of the night, he is completely thrilled to be wearing the costume wanted. I'm REALLY hoping for hubby to have the same luck this year, as he's had in the past, because I have no idea what I'll do if our son continues the costume fight. But for now, there won't be a Mario costume worn to the birthday party. My son had dresses himself for the day, wearing jeans and a Thomas the Train t-shirt. I argued with him, and at the suggestion of hubby, threatened to accidentally spill a bottle of water on his shirt, in order to at least get him to change into a Mario t-shirt. The threat of water was enough, and miraculously, the child let me change him into his Super Mario t-shirt. Small win for Mommy this time! In the mean time, my two year old is happily all decked out in her favorite Minnie Mouse dress, black tights, and the sparkly mouse ears that I ordered a few weeks ago. We only rarely have problems dressing our daughter. She usually doesn't like to wear clothes, but doesn't often fight us when it's time to get dressed. Especially if we put her in her favorite Mickey or Minnie Mouse clothes. She was thrilled to be wearing her costume, and couldn't wait to go to the party. But in the process of getting ready to go, Edward was fighting us about what to wear, and then started saying "I'm sick! I stay home!" Hello anxiety!
I think most autistic kids also suffer from anxiety. Neither of my kids does well in crowds, or new/different places and situations. We don't necessarily have a routine the way a lot of other autistic families do, but we do tend to do a lot of the same things with our kids, and only go certain places, because our kids can't handle anything new or different. If we go out to eat, we have our favorite places that we go to, where we've eaten several times prior, and our kids feel safe and comfortable being. We don't like to go to a lot of new places because the unfamiliar setting overwhelms our kids, which causes tantrums, meltdowns, and crazy behavior. Over the last two years, we've randomly added new destinations to our outings, and with the help of cell phones, tablets, and kids youtube kids, Edward and Serenity have survived with only slight behavior issues. But this week has been one thing after the next for us, and a lot of it has been new adventures. Even though the kids were super excited to go to birthday parties, they were both completely overwhelmed. I spent all week dreading going to the parties, not looking forward to the upcoming tantrums and meltdowns. Because my kids are autistic and don't do well in new environments, it is a lot easier on all of us, if we just stay home and hang out as a family. Our home is a safe environment for our family. It is completely drama free, and we have everything set up to where we are perfectly comfortable with the kids running around playing together. We keep the kitchen and bathroom off limits, but other wise the kids are able to play as they'd like anywhere in the house. We have minimal furniture just because it makes things easier for us. There is less to clean, and fewer things that can potentially hurt the kids. The only furniture in the kids' bedrooms are their beds and a toy box. It's all they need. I keep all their clothes hung and folded in their closets, and I keep the closet doors closed and secured with baby knobs. The kids can run and play anywhere in the house that they want, and it is completely safe for them. I never have to worry about someone running into a dresser and hitting their head, or pulling a table with a heavy TV on top of it, down on top of them. Our TVs are wall mounted, along with the video game consoles and cable boxes. Our home is the one place that we don't have to worry about our kids being. The doors are locked and alarmed, and the windows don't open. Our kids know that they are safe, and can play as they please. We don't have many rules, so the kids can enjoy being themselves. Being home is easy, and enjoyable. But then a monkey wrench is thrown into our lives in the form of birthday party invitations, and our kids' lives are completely turned upside down.
We had a great time at the birthday parties this weekend, but it definitely didn't come without hiccups. First we had the costume/clothes battle. Edward wanted nothing to do without someone out of the norm. Then we had the anxiety of not wanting to leave the house. Next came the immediate meltdowns at the parties.
Party #1:
We get out of the car, and Serenity sees the bounce house in the backyard. As I'm trying to help Edward out of the car, Serenity starts taking off across the front yard of the house we had just arrived at, wanting to go take over the bounce house. I had never met the birthday kid, his parents, or anyone else at the party, and within seconds of arrival, my two year old has it in her head that she's going to announce our presence by sneak attack invading the backyard and taking up residence in the bounce house. I was able to catch up to her, and scoop Serenity into my arms, and politely enter the home to meet the birthday kid's mom and grandma. Luckily, when I had called to RSVP earlier in the week, when I mentioned to the mom that my kids are autistic, she was thrilled to hear it and excitedly told me that her kid is too. It was honestly such a relief to be among people who actually are going thru the exact same thing as we are, and completely understand my kids' quirks. As soon as we entered the party house yesterday, Edward immediately threw himself on the floor, cowering in a corner. His friend's grandma immediately sat down next to him, talked to him super calm, and rubbed his back for a few minutes until Edward opened up, and joined the other kids to play. In the mean time, Serenity had been offered food, and like the little piggy she is, she was eager to dive into cupcakes, cookies, candy, and other junk food. If you didn't know better, you might think that I starve that child. I don't, we just don't give our kids very munch junk food. Their junk intake is extremely limited, so when they are offered something that Chris and I only rarely give them, our kids dive in like they're starving to death. It's almost amusing to watch. From that moment, things were going well. Edward almost had a potty accident at the party, until I noticed his hiding and trying to hold it in, and picked him, running him to the bathroom. We've been working on potty training since around June, but things haven't gotten any easier. Every day is a potty challenge. Some times Edward is fine and will go without any accidents, but others, he just doesn't care, and it's one accident after the next. Yesterday, was an ok day. He almost had an accident at the party, but I saved the day, and he was able to go right back to playing with his friends. He LOVED jumping in the bouncy house with the other kids, and even played on the swing set with Serenity, which turned out to be Serenity's favorite thing to do. Once she discovered the swing set, nothing else mattered. At one point, while playing in the bounce house with the other kids, one of the parents called over to me to tell me that Edward had gotten hurt. He somehow hurt his ankle, but after a few minutes of crying, and seeing all the other kids having a great time, Edward jumped up and went back to playing. We stayed at the party for about an hour, and as soon as I noticed the kids attitudes starting to change, I quickly corralled them, went and thanked the hosts for inviting us, and left as quickly as we could. As we were walking across the lawn to the car, I hear Edward whining, saying that he's stinky and needs new underwear. Joy!!! It's a good thing we were getting in the car because I would have hated to have to figure out a way to sneak my kid out of there without anyone noticing the stench coming from my five year old.
Party #2:
The second birthday part of the weekend was at the local gymnastics center. Walking into the party, we had zero issues. There wasn't any costume theme, or anything, so all I had to deal with earlier today, was the excitement of wanting to be at the party all day, when the party didn't start until 5pm. getting to the party, the kids were super excited to seen a huge room with padded mats and two huge bounce houses. SCORE!!! I was thrilled, thinking this was going to be a cake walk. The mom in charge saw us and came over to introduce herself. We got to talking, and one of her kids is autistic too. Turns out, this mom is also a teacher, and offers to help me with anything I need, answer any questions, anything at all. I love it!!! Once again, I don't have to explain my kids' quirks to anyone. This is awesome!!! 15 minutes later, Serenity has smelled pizza and sniffed out the kitchen where the food was, so she was sitting there eating her heart out, and I see Edward coming across the other room toward us, with a panicked look on his face.. "Mommy, my clothes are wet!" Great! Freaking fantastic!!! We've been at this party full of people we don't know for a whole 15 minutes, and Edward has an accident. I hurry Serenity along, helping her scarf down her pizza, quickly run to the host mom and tell her that Edward had an accident, so I'm running him home to change and we'll be back in about ten minutes or so. She was totally nice about it. We even talked about it when I got back with the kids. I seriously love that mom! She was the nicest, most friendly lady I've met in the longest time. The rest of the party went off without a hitch, and my kids had a blast! As usual, Edward had zero interest in presents, cake, or anything else. He just wanted to play in the bounce houses, so I let him do it. Serenity ate, and ran around playing, just like she does at home. Altogether, I think we were at that party for an hour and a half. The kids had the best time, and were exhuasted and pretty much ready for bed when we got home. They whined a little bit, ate some chicken nuggets, and happily went to bed without a fight. It was the easiest bedtime I've ever experienced with them!
All in all, it was a fun week. I'm sad that it is now midnight Sunday night, and I now need to get Edward's school stuff ready for tomorrow, and start another week. I almost feel like I didn't even get a weekend to recover from this past week, and now I have to do it all over again. Plus, Halloween is on Wednesday. Oddly, Edward doesn't have school on Wednesday, so that should be interesting. Personally, I think it would be better to not have school the day AFTER Halloween, but it's not my decision, so whatever. Free candy day is just a few days away, so I'll survive. Plus, when Chris gets off work tonight, he doesn't have to go back until Wednesday morning, and then he'll be off early to go trick or treating with us. It's going to be another busy, but fun week.
Sorry this got so long, but I'm trying to make it a point to share our autistic life with everyone. Our life isn't perfect or easy by any means. A lot of days are hard and often messy. Autism is definitely not a walk in the park. It can be extremely challenging at times, but also fun. This week has been really challenging for our family, but we survived it, and actually had a really good time. When things get rough, I may cry and want to rip my hair out, but at the end of the day, it's just a tough day, not a bad life, and everything is always ok in the end. After all, they do say that "Things are ALWAYS ok in the end. If it's not ok, then it's not the end." You just have to take things as they come, and trudging on. Trust me, I'm not a saint at all. Just a couple days ago I had a massive anxiety attack, and cried for hours. Poor Chris left work early to come to be with me and talk me thru it. He's my rock, and the one person that I can always count on for everything. He always makes sure that everything is ok, and keeps me going when all I want do is just give up. I never wanted to be a special needs parent. It's actually the one thing that I knew I NEVER wanted, and prayed to never experience. But obviously, God has other plans for me, and gave me two very different, very autistic kids. Our life is definitely an adventure, but I do really love it. My husband and kids are my absolute favorite people in the entire world. and there isn't anything that I wouldn't do for them. We have our challenges, just like everybody else. The kids make me completely crazy. But then they snuggle up with me and give me hugs and kisses, telling me that they love me so much. One of my favorite things lately is Edward giving me a hug and kiss and telling me "I love you in the morning!" It's the cutest thing ever and completely melts my heart. My kids might be a handful, but I wouldn't trade them for the world.
Again, sorry this is so long, I just want to be able to be completely honest and share all the struggles with you that we are going thru. I'm going to try my best to keep future blogs shorter. I'll also be sharing some other autism blogs that I think are inspirational and have a good message. If you know of anything that you think that my family, or others could benefit from, please feel free to share in the comments.
Welcome to our autistic life
I don't think that it is possible to actually be ready to hear that your child is autistic. While you might have started to accept that this diagnosis is a possibility for your family, hearing the words come from your child's doctor is still hard. Now imagine hearing those words about your 3 year old and then immediately also hearing the doctor ask that you bring your one year old baby in for an evaluation in a few months because while evaluating your older child, they also noticed some telling traits in your baby as well. Welcome to my autistic life! In an instant, we went from having one autistic kid to having two.
I grew up in a family of 5 with my younger sister being dyslexic. That was the most I knew about special education. My sister was diagnosed with dyslexia I think around ten years old, but my mom knew years prior that she had issues and needed help. However, my family doesn't communicate with each other, so the only thing I've ever known about dyslexia is that my sister sees letters backwards, and has trouble reading sometimes. I've never known anything else about it. She was enrolled in special education classes at school, and with the help of some amazing teachers she learned to overcome her disability, and went on to get good grades, and graduate from college with a teaching degree. I was never included in any family stuff, so I never had a part in helping my sister, or learning about her disability while growing up.
As a young adult, I got to know my extended family, and found out that several of my cousins are on the autistic spectrum. Again, I really never knew anything about it other than which cousins were autistic, and which also suffered from things like asbergers syndrome and ADHD. The most understanding I had about my cousins' disabilities is that they were super hyper and often seemed to be obnoxiously out of control. They were loud, in your face, running around all over the place, getting into everything, and often irritating to be around. Being so young and inexperienced, the only thing I knew was that I was bothered and thankful that they weren't my children. And stupid me, I hoped and prayed that I would never have autistic children of my own. Oops!!!
I'm sure being so selfish as to hope and pray about being spared an autistic child is exactly why I was given two of them. I always thought that autism is so hard to deal with, and that I could never be a decent parent to a special needs child. But surprise!!! I've become THAT parent!
My life revolves entirely around my autistic children. From the moment they wake up every morning, until I finally pass out from exhaustion sometime after midnight (usually between 1 and 3am), my entire day is spent chasing after and taking care of my kids. Having a two and a five year old is never easy, but when you throw in an autism diagnosis (or in my case two), it really takes things to a whole new level. Nothing about our life is easy. And honestly, sometimes it really feels like my kids take the phrase "go big or go home" to the extreme.
Each autistic person is so different, and can fall anywhere on the large spectrum that is ASD (Autism Spectrum Disorder). Each person can be similar to others or completely different. No case is the same. And go figure, my kids are polar opposites. What works for one of them, can't possibly work for the other. Other than the fact that my kids are both autistic and look a lot like their father, that is where the similarities end. Each of my kids like and hate completely different things. While my son loves macaroni and cheese, as well as peanut butter and jelly sandwiches, my daughter won't touch them. She would rather eat chicken nuggets and goldfish. If you dare try to give either kid something that they don't like, but their sibling does, it will result in the world coming to a screeching halt, and imploding all around them. Life as they know it will cease to exist, and it'll all be because you tried to give them the "wrong" food to eat. It all seems completely ridiculous, and a lot of the time I feel like I am raising the most spoiled, self centered children on the planet. But at the end of the day, deep down I know that I can't blame myself, because this is autism, and I am doing the best that I can.
My kids have no idea what they want most of the time, and couldn't tell me even if they did. They have no idea what is going on inside their heads. They just know that something is telling them that they need one specific thing, and until that need is satisfied, life as all of us know it, is completely over. And even when they get the one thing that they've been demanding for who knows how long, within seconds, their needs can change to something completely different. One minute my son might be throwing a tantrum wanting some juice, but as soon as you hand him a cup of juice, he'll set it down, completely forgetting all about it and start demanding something entirely different, like his tablet. The full cup of juice sitting on the table in the middle of the living room will have been completely abandoned, and the next obsession has completely taken over our lives. It might seem crazy, but sometimes when my kids start whinging and incessantly begging for something, I'll purposely ignore them, making them wait several minutes before I finally respond to whatever it is that they want, just to see if their mind changes. Sometimes, waiting them out will work, and I'll completely avoid having to respond to two different demands. But then again, there are times when my evil little plan will backfire, and they end up having 3 completely different back to back demands. There is never any way to tell if they will be changing their minds, so you just have to roll with the punches.
Even though our days are completely ruled by autism, no day is the same as any others. You can plan and prepare all you want, but in the end, nothing is going to go according to your plan, and you'll just have to deal with it. I've been living the autistic life for the last two years, and every day I have to be reminded that everything is going to be OK, and I just need to breathe, and keep going. My two year old may be tormenting my dog and making me want to rip my hair out, while my five year old is running around the house terrorizing his sister and making messes out of everything in sight while I try to make them some lunch, all while fantasizing about how amazing a nap would feel right at that moment. Life gets extremely hectic and chaotic, but I know that I just need to hang in there, and keep breathing, and just maybe, in the very near future, I'll get a much needed nap.
I grew up in a family of 5 with my younger sister being dyslexic. That was the most I knew about special education. My sister was diagnosed with dyslexia I think around ten years old, but my mom knew years prior that she had issues and needed help. However, my family doesn't communicate with each other, so the only thing I've ever known about dyslexia is that my sister sees letters backwards, and has trouble reading sometimes. I've never known anything else about it. She was enrolled in special education classes at school, and with the help of some amazing teachers she learned to overcome her disability, and went on to get good grades, and graduate from college with a teaching degree. I was never included in any family stuff, so I never had a part in helping my sister, or learning about her disability while growing up.
As a young adult, I got to know my extended family, and found out that several of my cousins are on the autistic spectrum. Again, I really never knew anything about it other than which cousins were autistic, and which also suffered from things like asbergers syndrome and ADHD. The most understanding I had about my cousins' disabilities is that they were super hyper and often seemed to be obnoxiously out of control. They were loud, in your face, running around all over the place, getting into everything, and often irritating to be around. Being so young and inexperienced, the only thing I knew was that I was bothered and thankful that they weren't my children. And stupid me, I hoped and prayed that I would never have autistic children of my own. Oops!!!
I'm sure being so selfish as to hope and pray about being spared an autistic child is exactly why I was given two of them. I always thought that autism is so hard to deal with, and that I could never be a decent parent to a special needs child. But surprise!!! I've become THAT parent!
My life revolves entirely around my autistic children. From the moment they wake up every morning, until I finally pass out from exhaustion sometime after midnight (usually between 1 and 3am), my entire day is spent chasing after and taking care of my kids. Having a two and a five year old is never easy, but when you throw in an autism diagnosis (or in my case two), it really takes things to a whole new level. Nothing about our life is easy. And honestly, sometimes it really feels like my kids take the phrase "go big or go home" to the extreme.
Each autistic person is so different, and can fall anywhere on the large spectrum that is ASD (Autism Spectrum Disorder). Each person can be similar to others or completely different. No case is the same. And go figure, my kids are polar opposites. What works for one of them, can't possibly work for the other. Other than the fact that my kids are both autistic and look a lot like their father, that is where the similarities end. Each of my kids like and hate completely different things. While my son loves macaroni and cheese, as well as peanut butter and jelly sandwiches, my daughter won't touch them. She would rather eat chicken nuggets and goldfish. If you dare try to give either kid something that they don't like, but their sibling does, it will result in the world coming to a screeching halt, and imploding all around them. Life as they know it will cease to exist, and it'll all be because you tried to give them the "wrong" food to eat. It all seems completely ridiculous, and a lot of the time I feel like I am raising the most spoiled, self centered children on the planet. But at the end of the day, deep down I know that I can't blame myself, because this is autism, and I am doing the best that I can.
My kids have no idea what they want most of the time, and couldn't tell me even if they did. They have no idea what is going on inside their heads. They just know that something is telling them that they need one specific thing, and until that need is satisfied, life as all of us know it, is completely over. And even when they get the one thing that they've been demanding for who knows how long, within seconds, their needs can change to something completely different. One minute my son might be throwing a tantrum wanting some juice, but as soon as you hand him a cup of juice, he'll set it down, completely forgetting all about it and start demanding something entirely different, like his tablet. The full cup of juice sitting on the table in the middle of the living room will have been completely abandoned, and the next obsession has completely taken over our lives. It might seem crazy, but sometimes when my kids start whinging and incessantly begging for something, I'll purposely ignore them, making them wait several minutes before I finally respond to whatever it is that they want, just to see if their mind changes. Sometimes, waiting them out will work, and I'll completely avoid having to respond to two different demands. But then again, there are times when my evil little plan will backfire, and they end up having 3 completely different back to back demands. There is never any way to tell if they will be changing their minds, so you just have to roll with the punches.
Even though our days are completely ruled by autism, no day is the same as any others. You can plan and prepare all you want, but in the end, nothing is going to go according to your plan, and you'll just have to deal with it. I've been living the autistic life for the last two years, and every day I have to be reminded that everything is going to be OK, and I just need to breathe, and keep going. My two year old may be tormenting my dog and making me want to rip my hair out, while my five year old is running around the house terrorizing his sister and making messes out of everything in sight while I try to make them some lunch, all while fantasizing about how amazing a nap would feel right at that moment. Life gets extremely hectic and chaotic, but I know that I just need to hang in there, and keep breathing, and just maybe, in the very near future, I'll get a much needed nap.
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