Autism Sucks! It's hard. But I'm learning to find the little sparks of joy.

 Last year was really tough.  My husband's company transfers us A LOT!  We've moved 4 times in just two years.  This last move has been good, but the one before was literally a nightmare.  One thing went wrong after another.  First, the tiny town that we moved to didn't offer Pre-k3, so Serenity was left stuck at home instead of going to school every day like she had been used to since turning 3.  All of the progress that we had worked so hard on for the last several years started to really regress, and we started experiencing a lot of crazy behaviors.  My kids LOVE school!  They beg to go to school, even on the weekends.  When Serenity lost school last year, she began developing signs of Oppositional Defiance Disorder (ODD), which let me tell you, it is the absolute WORST thing ever!!!  Every day, Serenity got upset because Edward go to go to school, but she didn't.  She would whine and cry, and throw massive tantrums all day long.  I was told by the school district that I could apply to have Serenity attend the Head Start program, which I was super reluctant to do, because I hadn't ever heard anything good about them.  The Head Start program started when I was a young child, and was mostly low income families who needed free daycare.  They don't use accredited teachers at all.  Literally anyone can be a Head Start teacher.  I had a lot of doubts about allowing my daughter to be a part of that program, and I honestly wish that I had never done it.  I've only ever heard horror stories from people who have had kids in those programs, all over the country, and I just didn't feel comfortable being a part of it.  My husband and I talked it over, and decided that maybe we should at least give it a try.  Yes, we hadn't heard great things about it from anyone we had talked to, but with Serenity losing her schooling, we had to do what was best for her, and we figured that any kind of routine schooling type activity was better than nothing.  I applied, and because my child is "disabled" due to Autism, she was immediately accepted.

Serenity used to be non-verbal.  She didn't start speaking until she was about 3 years old.  I was scared to enroll her in the public school program because she can't communicate with us about what she wants and needs.  She has gotten A LOT better in the last year and half, but at 3 years old, she was barely able to say Mommy and Daddy, and sometimes her own name.  She couldn't tell you her last name, how old she was, her parents names, address, phone number, none of it.  And the very few things that she could tell you, you were lucky if you could even understand her.  Most things sounded like complete jibberish.  My kids have been going to therapy since Edward was 3, right after he was first diagnosed with Autism.  Serenity was diagnosed at 19 months old (the doctor discovered hers during Edwards evaluation when she was 12 months old and asked us to bring her back 6 months later).  Edward immediately started receiving services at a wonderful therapy center, where Serenity started as well right after receiving her own diagnosis.  We loved our old therapy center in Tennessee.  All of the therapists were absolute angels, and treated us like we were their family.  I couldn't have asked for anyone better to be taking care of my kids.  However, after a year of therapy there, my husband's job transfered us to North Alabama, and we lost our services.  Edward started kindergarten shortly after we moved, and then Serenity started receiving services through the state until she turned 3, and then those services shifted to the local school district.  Being an Autism Mom, I make it a point to do everything in my power to find my kids the best possible school in the best possible district that I can, within an hour of wherever we are transferred.  The school district we first moved to was wonderful!  We were in a small town, and I immediately got in touch with the district special education director before we moved, and worked with her to transition both of my kids into school.  I had a wonderful relationship with the district special education director, the school special education teachers, the principal, and my kids' teachers.  I was in constant communication with all of them, often talking with them every day.  When Serenity had to transition into Pre-K3 on her third birthday, I was scared to put her into school, but she went right into a class with one of Edward's teachers who I absolutely loved, and it made things really easy for me.  I had a wonderful relationship with that teacher, and she basically became family.  We absolutely loved her!  Unfortunately, a few months later, we were transferred to Mississippi.  Once again, I did my homework, and worked with the new school district special education department, and ended up in a great school situation.  My kids loved their teachers.  Just before we left Alabama, I found out that Edward's kindergarten teacher had been bullying us all year, without me knowing it, and as soon as I realized what I was going on, I immediately put a stop to it.  I had no idea about it, because being Autistic, Edward couldn't tell me what was going on.  He wasn't able to communicate to me that he was being treated differently than the other kids.  I had a bad feeling about that specific teacher the first moment that I met her, but I've always been told by my family that "the teachers are professionals and know what they're doing.  Let them do their job!"  So I trusted the woman.  I trusted her for about 7 months before I found out what was going on.  Every day, starting on the first day of school, she would send a note home with Edward about him having bad behavior.  My sweet little Edward.  I had never heard such a thing from anyone.  I mean, don't get me wrong, my kids definitely aren't angels, and I'll be the first one to tell you all about what kind of demonic crap they can get up to.  And I will never deny it if you tell me that my kids are brats, and did some thing wrong.  I'll always believe you, because I fully know what kind of crap they are capable of.  I see it every day.  But my kids have NEVER misbehaved in school.  I've never had a bad report from a single teacher or therapist, except for that one specific woman.  All of Edward's other teachers were constantly telling me what a sweet boy he is and how he's such a pleasure to have in their class, and just how much they love him.  Yet every single day, that one teacher had "behavior problems" with him.  Just two weeks into school, my husband and I were called in for an IEP meeting, and the woman told us that Edward wasn't "mature" enough for kindergarten, and that she wanted to push him back into Pre-K.  Edward had never gone to Pre-K.  We chose not to send him, because the school district we lived in at the time completely sucked, and I had actually gotten into a fight with them over his Autism diagnosis.  The district special education lady told us that she didn't believe Edward's diagnosis from Vanderbilt University and the National Autism Study that my kids are a part of.  She said that she didn't think that Edward was actually autistic, and maybe just had some kind of "developmental delay".  Yeah, whatever lady!  Tennessee doesn't require their teachers to be licensed.  You can just randomly decide out of the blue that you want to be a teacher, and they'll give you a classroom full of students.  Why the hell should I believe someone who I'm not even sure is college educated, or even knows a single thing about Autism?  Plus, Edward was going to his therapies at the center that we loved, 2-3 hours a day, 4 days a week.  Why did we need to send him to Pre-K?  Also the therapy center had a group of kids his same age that they did their own Pre-K group with two days a week.  We spoke with the kids therapists, and decided that Edward was progressing wonderfully with all of his therapies, so rather than pulling him out, and putting him in public school that year, we would continue with the therapy schedule that we were already on.  When we moved, and the therapy center gave me all of my kids' paperwork, Edward's therapists assured me that he was right on track, and fully ready to start Kindergarten, and that they had absolutely no concerns that he wouldn't do well in school.  So when we were told by the Kindergarten teacher that Edward wasn't "mature" enough for Kindergarten, and needed to be held back, I was angry.  She was contradicting everything that we had previously been told.  But being new to the public school program, and having been told by my family that the teachers know what they're going and to listen to them, I blindly did as I was told.  The school allowed Edward to go to Kindergarten for about 2 hours in the morning, then pushed him into Pre-k for the remainder of the day.  It wasn't until we were moving to Mississippi, and I started talking to the new school district, trying to work out a plan for Edward's IEP, and was told that they didn't have a program like he was currently doing, that I found out what was really going on.  I immediately went to the kids' Pre-K teacher (she had Serenity in the morning and Edward the remainder of the day), and I asked her what to do because the new district was going to put Edward into full-day Kindergarten, and I was worried about him being behind.  However, she told me that she wasn't even sure why Edward was in her class in the first place, because he didn't need to be.  He was plenty "mature" enough for Kindergarten, he was reading, and far more advanced than all of the other kids, and that she felt that Edward should have been in full-day Kindergarten all along.  Interesting!  After talking with her, I immediately went to the Principal to discuss my concerns, and had Edward moved from partial day Kindergarten, back to full-day, for the remainder of our time at the school, until we moved a couple weeks later.  From the second Edward went back to full-day kindergarten, his teacher was FURIOUS!  That woman HATED me!  She was very snippy and rude to me.  Every single day that year, she marked Edward down on his behavior. She hated that I went over her head to the Principal, but I was mad, and I couldn't believe what was happening.  I told the Principal everything, and she immediately remedied the situation.  The even crazier part was when we moved, I bought cupcakes for my kids' classes, and took them to the school on the kids last day, just to say thank you and goodbye.  I arranged a specific time with each teacher, for me to come in that day.  When I walked into Edward's classroom, the teacher immediately hid from me.  She said maybe 2 words to me, then hid in the back corner as I passed out cupcakes and the other students all said goodbye to Edward.  Edward's other teachers gave him a nice gift to say goodbye, and kept telling me how sad they were to see us go.  But then this woman . . . As we were leaving that day, she handed me Edward's report card, and a letter to the new school, telling them her wishes that he be held back the following year, and repeat Kindergarten all over again, because she felt that he wasn't "ready" or "mature enough".  I was PISSED!!!  I still have that letter.  To this day, it still seriously angers me.  Obviously, I never gave the letter to the new school.  My husband and I talked about it, and decided that we would let the new school do their own evaluations, and that we would decide what to do at the end of the year.  And even then, IF they recommended that Edward be held back, we would hire a tutor or something to help us over the summer, then have him reevaluated after that, before we made a decision on what grade he would go into.  The new school LOVED us!  The teachers loved us!  At the end of the year (3 weeks after we moved there), I had a meeting with the school special education teacher who told me just how wonderful my kid is, how well he was doing, how advanced he was, and that he would do great in first grade the next year.  I then told her about the letter from the Kindergarten teacher at the old school and she was completely SHOCKED!  She came right out and told me that it sounded to me like that teacher had been bullying us because she didn't want to deal with an Autistic kid.  I told her about how the teacher had been irritated with me when she first found out that Edward had never gone to Pre-K, and the Special Education teacher told me that it was probably a combination of that irritation and the Autism, that made that teacher decide to bully us.  She didn't want to be "inconvenienced" by my kid, so she pushed him off on someone else.  Every day the woman marked down his behavior as a problem, and sent a note home about it.  Every day, I made Edward write her a letter telling her how sorry he was for being "naughty" and the he would do better, and I would sent it to school with him, along with her favorite candy bar as an apology.  The new school was baffled by what we had been through, and couldn't believe that had happened.  It's now been almost two years, and I am still really upset over it.  Edward is now in second grade, and absolutely THRIVING!  He has perfect grades, perfect behavior, and I am once again told what a wonderful, bright and gifted student he is, and how he is going to do so many wonderful things in life.  But that one Kindergarten teacher completely bullied us because she had a problem with Autism.

Anyway, so back to Serenity.  Serenity started Pre-K at the age of 3, and went right into our district's 3 year old program.  When we moved to Mississippi, the district had the same program, so Serenity was able to continue exactly what she was used to, and we actually added a few more days.  Originally she was going for 2 1/2 hours a day, 2 days a week, which was then moved to 3 hours 3 days a week, then 5 days a week.  Serenity LOVED school!  She was doing really well.  She started to speak more, and was speaking more clearly every day.  Then then, 5 months after moving Mississippi, we were transferred back to a tiny town in Alabama, with a smaller school district.  I had done my homework on the district, and they had the highest rated schools in the area.  Every school in the district had an A Niche score.  But when we got to town, we found out that there was only a Pre-K4 program, so Serenity lost her schooling.  She was able to get half an hour of both speech and occupational therapy through the district, once a week, but that was it.  And that was when her behaviors started.  Serenity was so upset over losing school, that she was lashing out at my husband and I because she wanted to be like Edward and go to school every day.  It was then that we decided to give the Head Start program a chance.  We were very reluctant, but decided that some kind of schooling was better than nothing, and being the super involved, helicopter parent that I am, I would be watching them like a hawk to make sure that everything was going well.  Unfortunately for everyone, Head Start is run by the state and the local county, not by the school district.  Serenity had to be driven 25 minutes to the next tiny town (even smaller than where we lived, as in one high school and one lower school for kindergarten-8th grade) for her to attend Head Start.  And school started for both kids, in two different towns, at the exact same time.  I had to drop Edward off by 7:30 in the morning (the earliest I was allowed to drop off), and race like crazy to get Serenity 25 minutes away to the next town, to school there before 8am.  Serenity would get out of school at 2pm, and then I would have to race back across town to pick Edward up at 2:45.  Luckily (well, not so much for us because it was a nightmare), Serenity only attended Head Start for two weeks.  I won't get into all the details, but there as a Child Welfare Services report filed by me, due to my daughter being abused and neglected by her "teachers".  I also got into a fight with the head of the county Head Start program when I withdrew Serenity, and the guy tried to lie to my face about a conversation that we had in person, just a week prior.  A conversation that was had during a "parent meeting" about a bully in the class.  The guy tried to tell me that it never happened, there wasn't a bully, and IF there was, it wasn't any of my business, and I wouldn't even know about it, unless my child was either A: the victim or B: the bully.  Which was all exactly my point.  I shouldn't have known that a bully existed unless my child was one of those two people.  Yet the dude, talked to all of the parents about it, asking what we felt would be the program's best actions to deal with said bully.  Dude completely denied the entire thing.  I called him out on everything that was said, then demanded the withdrawal paperwork for my kid, and let him know that not only would she never be back, but that I had filed a child welfare report, and that they were being investigated because of the abuse and neglect to my kid.  Let's just say that thanks to the report that I filed, the entire program in that country was completely shut down within two months.  I have no idea what was found, because Child Services never told me any details after coming to my home to see my daughter, but the program was shut down, and everyone lost their jobs.  But really, what can I say except YOU'RE WELCOME!!!!!

I absolutely hate what my children have been put through.  Every day I wish like hell that I had known what was going on sooner.  I wish that my kids had been able to tell me what happened at school.  I wish they had been able to come to me to tell me that the teacher was being mean to them and treating them unfairly.  Serenity's Head Start teachers were refusing to take the students to the bathroom, and I only found out when Serenity was being sent home in wet clothes every day, then I suddenly showed up to pick her up early one day (her last day there I showed up before 1pm after text messaging the teachers to let them know I was on my way).  When I got there, Serenity's clothes were completely urine soaked, and she was shivering cold.  I touched her clothes and they were wet from her neck down, and ice cold.  When I asked the teacher for the two outfits from her cubby, so I could change her clothes, I was told that those were also wet, and that she had peed through them.  Dude, they literally told me that my kid had 3 accidents between 8am and 1pm, going through 3 sets of clothes, and they couldn't even be bothered to let me know?  Edward had an accident one day in kindergarten, and after he was changed into clean clothes, I received a text message asking me to please bring an extra set of clothes to the school right away, just in case.  After that day, I made sure that my kids' backpacks both had 2 sets of clean clothes in them, every day.  The day I picked Serenity up from school, in the soaking wet clothes, it was 25 degrees outside.  I had to parade her through the school building across, the freezing cold parking lot, out to the car, where she then had to sit in her wet clothes to drive 25 minutes home before I could bathe her, and get her warmed back up, and into clean clothes.  I was FURIOUS!!!  That was her last day of Head Start.  It was a Friday, and Monday I threw a massive fit to the Head Start office, and filled our the withdrawal paperwork, spoke with the school principal at the school the Head Start program was located at, who was amazing, pissed off that he had no idea what was going in his own school, and went with me to get Serenity's soiled clothes from the Head Start teachers who had failed to put them in her backpack for me the day I picked her up.  I then called the local child advocacy center to ask for advice about what to do to help my kid, and then told immediately let me know that what my child had been through was both abuse and neglect, and that by law they had to file a report with child welfare services.  At first I was terrified and angry, because I didn't want my name, or my child's name on any case of theirs.  I've always been terrified of those people, because in a lot of places they've been known to traffic children for money, taking them away from loving families for bogus reasons.  I didn't want any part of that, and I refused to risk my children for anything.  Unfortunately, because I had called the child advocacy center for advice, they by law had to file a report.  The lady assured me that she wouldn't give child services my name or information, but without my help, how great of an investigation could they really do?  How many other kids were being neglected and abused?  How much proof could they get without me?  As a mother, you never want your kids to be hurt.  I was put in an impossible position, but I had to help.  How many other children just like mine were being hurt?  If I could save just one other child, it make what I was doing worth it.  I let the child welfare agent come to my home, and see my daughter.  I cooperated with the report and investigation, providing pictures of what happened to my daughter.  Now, like I stated earlier, I have no idea exactly what was found, but the program was shut down.  Child Services told me that because Head Start was run by the State and the County, it was one state agency investigating another state agency, which is a HUGE deal.  To this day, I am so glad that I cooperated, and had that horrible program shut down.  I have no idea how many children I saved from abuse, but I know that it was over 50 just in the two classes at that one school.

It's now been just 13 months since that awfulness happened, and I still regret ever putting my daughter in that awful situation.  I had no way of knowing what was going on.  My daughter was only 3 years old, and barely verbal.  She was hardly able to tell me what she wanted to eat, or that she wanted to watch Mickey Mouse Clubhouse on tv.  How was she supposed to tell me that she was being abused and neglected in school?  With Autism, my kids have a really hard time communicating their wants an needs.  Last year, Edward was being bullied by a kid at school, who was stealing his lunch, and I had no idea until the day that Edward asked me to pack him a second lunch for that kid, and I went to the teacher to ask if the kid needed a lunch.  My sweet little boy thought that the other kid was just hungry and didn't have a lunch.   Come to find out, he got free lunch at school every day, and didn't need anything at all.  The teacher was providing the kid snacks every day, and then he got lunch at school.  He didn't need Edward's lunch, yet he was taking it anyway.   And sweet little Edward just thought that his "friend" was hungry.  He also thought that when the kid chased him on the playground at recess and threw balls and took stuff from him at PE, that it was a fun game.  He thought the kid was his friend.  My sweet little boy had no idea that he was being bullied, and as soon as I found out, I immediately contacted the teachers, and had a stop put to it.  I even went as far as going to the Principal around Christmas to ask if there was something that I could do to help the other kid's family because my husband had gone to the class Christmas party and the kid seemed really down.  He didn't have a parent there, and he was completely withdrawn and upset the whole time.  I found out that he was the only child who wasn't signed out early after the party, and had to stay at school the fully day.  It broke my heart, and I wanted to help.  I had also noticed in class photos that the kid's clothing was too small and didn't seem to fit him.  I offered to give his family clothes, food, Christmas presents.  The kid might have been bullying my son, but I had no idea what kind of craptastic home life he had, and no child deserves to go without.  My husband and I definitely aren't rich.  We've struggled from time to time, but we do our best, and our kids have never gone without.  We give back as much as we can, and we do our best to help out whenever we see the need.  Edward couldn't tell us any of that stuff about what was going on with his "friend" at school.  He was completely oblivious.  He didn't know that he was being bullied.  Because of Autism, he has an entirely different set of social cues than other kids.  My kids don't pick up on things that others do.  They see the world differently.  My kids are always happy, and always smiling.

These last 9 months of Covid completely ravaging our country, my kids have been completely oblivious.  They have no idea what is going on around them.  Literally all they know is that there is a "big bad sickness" and they can't leave the house.  They are doing virtual school, other than going to routine doctor visits and the one day we took the kids to the zoo back in November, my kids haven't left the house in 9 months other than go maybe drive through somewhere for food.  They've been home for 9 long months, and they have no idea why.  They don't understand what is going on around them.  They just know that they can't go to school because Mommy and Daddy said that is isn't safe, and they'll get very sick and could end up in the hospital.  My kids think that the hospital is a fun place.  Taking them to Vanderbilt Children's Hospital for evaluations was always fun for them.  The staff there is wonderful, and does all play based evaluations.  My kids have always had a great time at the hospital, and have no knowledge about what a hospital is REALLY like.  Even Alabama Children's hospital is more of a fun experience, the couple times that we've had to go there.  My kids don't remember the MRIs they've had to get, or anything else, because they've been under anesthesia.  All they remember is that the nurses and doctors played with them.  They don't know what really goes on at all.  Autism is an entirely different world.

Yesterday, while my kid were eating lunch, Serenity said something to me, which is REALLY bothering me right now.  Because my kids and Autistic and unable to communicate with us the way that other kids their age do, they aren't able to tell us things that happen.  We can ask them questions all we want, until we are blue in the face, and it's like talking to a brick wall.  We can explain Covid in extreme detail, and they'll still be completely clueless.  My kids to this day, still think that Walmart has the "big bad sickness" and that's why they can't go there.  They have no idea what Covid is airborne, and all around us.  They don't understand why they have to wear a mask if we go places, or why Mommy and Daddy are spraying everything that comes into our house with Lysol; mail, amazon deliveries, groceries.  Literally everything coming in the door gets Lysol.  They don't understand what our family is at very high risk for getting sick, and that if one of us catches this horrible virus, we could immediately end up in the ICU and possibly die.  My husband and I have been doing everything we possibly can to prevent all of us from getting sick.  None comes into our home, we don't go out unless absolutely necessary, and then it's just him and I, and we immediately shower and wash our clothes as soon as we get home.  Our kids don't understand any of that.  They have zero concept of the things that happen to them.  They don't understand that vaccines help them, and prevent them from getting sick.  They just know that the injection hurts.  They don't know when they are being picked on and bullied.  They can barely communicate their wants and needs to us a lot of the time.  So yesterday, my kids were sitting at the dining room table, eating their lunch, the same thing they eat every single day of the year, and Serenity says "Mommy, when I used to go to school, the girl took my lunch.  She stole my food!"  Serenity is now almost 5 years old.  She turns 5 in February.  She is talking so much now, most of the time about things that my husband and I care less about, but because of Autism and her specific behaviors, when she tells us things, she says them repeatedly, until we acknowledge them.  She'll repeat things literally a million times, until we acknowledge what she's said.  My kids have no idea what lying is.  They don't really know what "pretend" is.  So for Serenity to come to me and tell me something that randomly happened to her at school a year ago, when she hasn't been in a school building or setting at all since then, I have to believe her.  I also know from unfortunate experience that her last time at school was completely horrible, and that she was abused and neglected.  So hearing those words out of her little mouth, that some girl stole her lunch, completely crushed me!  I am devastated!  I feel like the worst mother on the planet.  I literally want to cry.  I know that I did the right thing, pulling Serenity out of the Head Start program, and filing the Child Services report, that went on to get them shut down.  I know that I saved at least 50 other kids from the same abuse and neglect that my baby girl went through.  It kills me to know that my baby went through all of that, without being able to tell me about any of it.  And just now, some of those memories are coming back, and she is able to communicate well enough to tell me that it happened.  Of course there is absolutely nothing that I can do about any of it at this point, and I am more than happy that it's all behind us.  But at the same time, I am completely devastated that my sweet little baby girl, had to go through that nightmare.  I feel terrible for putting her in that situation, and for not being there to protect her.  And that is going to stay with me for the rest of my life.  I feel like I failed my daughter.  She isn't even 5 years old, and I feel like I've failed her.  I fight every single day to do what is best for my kids, to give them the best foods, get them the best therapies, find them the best schools, the best vitamins, the best clothes, the best toys, the best books . . . I fight every day to be my kids' advocate and their voice.  I fight for them because they can't fight for themselves.  But some days, I just feel like a complete failure, and it's like a punch to the gut.  Serenity's words are killing me right now, and after everything that we've been through in the last 13 months, I'm back to feeling like I've completely failed her.  I put her in that situation.  I wasn't there to protect her.  I feel like I've failed as a mother and as a parent.  I should have been there.  I should have done better.

Autism freaking sucks!!!  It steals things from you.  It cripples you.  You will fight every single day to get all of the best things for you kids.  You will do everything you possibly can for them, spend every last cent you have to give your kids the best life possible.  My kids don't ask for much.  They are spoiled rotten and have  more clothes and toys than any other kids that we know.  My kids have their routine, and things the same every single day, because that's Autism, and that's the life that we live.  A couple weeks ago, Edward asked for pizza for dinner.  It was right before Christmas, and we still had presents to buy, and bills to pay.  I told Edward no pizza because we didn't have a lot of money to throw around.  He was upset and bugging me about it, so I told him to go away, and "go talk to Daddy" because Daddy has a way of explaining things better, and is always able to get through to Edward in a way that I can't.  My husband bought the kids pizza that night.  And when I questioned him on it, I don't remember the exact words he said to me, but basically what he said was that our kids don't ask for much.  So when they do, and when it's something as cheap as a $5 Little Caesars Pizza, we can figure out a way to get it for them.  $5 isn't going to completely devastate us.  Ok, so I was trying to save money, and figure out how to pay all of the bills, and still give the kids a good Christmas with our small budget.  I've been really sick for several months, and my medical bills have been adding up.  I was stressed out with Christmas and finances, so I said no to pizza.  But my sweet sensible husband reminded me that it's just pizza, and it brings the kids joy.  No, they didn't need it.  We had plenty of food in the house, and we were never in danger of anyone starving.  The kids just wanted a treat, and they should never go without because we think that we can't, or we don't want to figure out a way to do something.  If we can't figure out a way to buy the kids a $5 every so often, then what kind of parents are we?  It's only $5, and it brings a smile to their little faces, and gives them so much joy.  And with everything else that they are going through, how can we deny them the simple joy of pizza?

Autism is hard.  It flat out sucks!  There are so many challenges that we go through in our lives.  Every day is a fight for something.  A lot of the time you as a parent are going to feel like a complete failure.  But in the eyes of your kids, you're a hero.  I saved my kids from being bullied and abused.  I feel like the worst mother on the planet for my kids having to go through those tough situations.  But you know what?  They really have no idea that the stuff even happened.  But you know what they do know?  They know that when they asked, they got a $5 pizza, and that made them happy.  Autism sucks!  But the smiles and the joy that are behind the struggles, they made every fight worth it.

Our Covid Life

 It's been a year since I've updated this blog, and honestly, I've had writers block for a while.  Things have been kind of crazy, and I really haven't known what to write about.  I asked my husband for his thoughts, and he told me that there is so much time spent focusing on the hard and the bad side of autism, that I should write about the positives.  He said that there are so many great and adorable things that happen in our home, that just don't get talked about, but should because no one gets to see them except for us.  I try really hard to keep things honest, and not pretend that everything is all hunky dory, and completely fabulous, because the reality of the situation is that we all have our tough days, and living with autism is really hard.  I won't lie to you and tell you that everything is always super great for us, because that's just not how life works.  But at the same time, we do still have a lot of wins that I guess I don't talk much about.  I don't even know why that is.  I don't know whether I'm trying to not rub it in anyone's face saying "hey look what my kid did that your kid can't", or what my reasoning is.  I didn't even realize that is what I've been doing at all.  I guess, in a way, I try to sympathize with everyone.  I try to share our struggles as a way of showing other families that hey, you aren't alone in this, we go through all of this crap too.  We have a lot of really tough days, just like everyone else.  We have days when I want nothing more than to slam my head into a wall, scream, cry, and eat my weight in caffeine and chocolate donuts.  But we also have some really great days where life just seems normal for once.  Days when it almost feels like we are the typical american family, and autism doesn't exist in our world for the time being.

The last several months have been tough for everyone, and I won't lie, it's definitely been a challenge for us.  Having the kids home all the time, and losing their services has been hard.  We also moved two more times since I last posted anything.  We've now moved 5 times in the last two years, and while everyone I know cringes at the thought of moving just once, and always asks me how I do it, I just shrug.  Moving really isn't so bad.  My kids actually adjust to moving incredibly well.  Infact, they look forward to moving to a new place, probably more than my husband and I do.  The last home we lived in had a ton of problems.  It was a great size house, and we had a ton of space both inside and outside, for the kids to run around.  On the surface, the house was perfect.  But what no one but my husband and I saw, were the little things that actually became really big things to us.  We were all so glad to get out of that place, and move somewhere better.  We also got to move from a tiny town to a major city.  Because of Covid-19, we won't get to really experience all the true benefits of being back in a large city (mainly the availability of therapy services for the kids) for quite some time, but the one thing that I am really enjoying, is the availability of food and grocery delivery.  Because of Covid, I am having to home school our children, and it honestly takes up a ton of time.  But while I am busy with teaching my kids, my groceries are delivered right to my front porch, that I ordered from the comfort of my bed the night before.  It is honestly the best thing ever!  Yes, I have to pay a delivery fee, and I of course am always sure to tip my delivery driver.  But I don't have to take any time out of my day to cruise the grocery aisles of our local Walmart while my kids fight over random things, or whine and cry about what they want, but I don't want to buy them.  I don't have to deal with any of that.  I can order exactly what I need, right from the app on my phone, and have it delivered in as little as two hours if I need to.  Grocery delivery has seriously become my favorite thing in the world lately!  I even had our groceries delivered the day that we moved.  You have no idea how amazing it was to move into a new home and immediately have groceries delivered right to our door, without ever having to take a break from unloading the moving truck.  It was awesome!  We of course still had dinner delivered that night (and lunch the next day), because hello, who wants to cook after moving?!  But at least we had food for the kids to eat all day.

Along with our recent move, came downsizing.  We moved from a house that was 1, 371 square feet to an 1,156 square foot townhouse.  It's not too much smaller, but those 215 square feet actually make a huge difference.  We went from having 3 large bedrooms, to only having two.  The kids are sharing a bedroom again, which they actually love!  We also had a very large kitchen and laundry room at the old house, which we don't have at the new one.  But that's ok, because we don't need the huge laundry room.  Having a bigger kitchen would be nice, but we know this move isn't permanent, so we aren't crying about it.  We just have to push the kids out of the kitchen when we are trying to cook, because there just isn't room for more than one person in there at a time.  Even though we've got less space at the new house, it actually works for us, and we've added more furniture to our home than we had previously.  Because I am having to home school our kids, my husband and I are doing everything we can to make my life easier, and make our home into a better, more accessible and learning conductive environment, as we possibly can.  We've added a dining room table and chairs, which we actually haven't had in about 6 years.  We've talked about getting a dining room set for a really long time, but we honestly just never really had a use for one.  The last time we had a dining room set, it was basically used as a catch all.  I think we only ever used it maybe twice, for dinner.  It was just somewhere to put stuff to get it out of the way.  The mail would be dropped there, purses, car keys, toys, clothes that needed to be put away, movies, groceries, etc.  The dining room table was basically temporary storage for whatever thing happened to be in our hands at the time, that we needed to put down somewhere, and was instantly forgotten about.  Every so often it would get cleared off, and everything would be moved to its actual home, but the mess always came back.  That table was never clear of junk the entire time we had it.  But now, in our new home, we actually have a dining room table that we use for eating.  We've always just eaten our meals in the living room in front of the tv.  The kids are used to running around playing while eating at the coffee table.  Because our kids are only 4 and 7, using the coffee table for them to eat, just worked for us.  It's at their level, and they can reach their food without our assistance.  It was the perfect solution for not needing high chairs or booster seats.  But now, for the first time, we are actually legitimately sitting down to eat our meals as a family.  Just yesterday, Edward helped me make dinner, and Serenity went into the living room to tell Daddy to join her at the table for dinner.  Chris wasn't even hungry at the time, because he had eaten a big meal while the rest of us napped, but he was thrilled that Serenity wanted him to come sit at the table with us while we ate dinner.  We've only had the dining set for a few days, but already, the kids have adjusted to having it, and expect to eat their meals in the dining room, as a family.  It's a huge change for us, but one that the kids have quickly and happily adapted to.  They are still adjusting to not using phones and tablets at the table, but we actually haven't had a fight about it at all.

Having to switch from traditional schooling to home school has been a challenge for our family.  This whole Covid situation is nothing short of a nightmare.  However, the one positive to it has been that it really hasn't effected our family too much at all.  Because of autism, our kids are more or less homebodies, and don't really like going places.  They actually prefer to be home rather than out somewhere.  When everything first started shutting down, it was tough for us not getting to go places like school, Walmart, and to visit Daddy at work.  But now that we've gotten used to it, things are actually great.  We've been able to slow down a lot, and haven't had a busy schedule at all.  My calendar used to be completely full of therapy and doctors visits for all of the different specialists that come with having special needs children (pediatrician, feeding therapy, occupational therapy, speech therapy, ABA therapy, Gastroenterologist, Optometrist, Dentist, Neurologist, Pulmonologist, ENT, Developmental Pediatrician, etc.)  We were always so busy running from one therapy, or doctor to the next, and then of course had all kinds of school events thrown in; book fair, field trip, class performance, back to school night, teacher conference, IEP meetings, etc.  But now our calendar is completely empty, and it's really nice!  We've had a few doctor appointments, but otherwise, absolutely nothing has been going on.  Chris and I thought about restarting the kids therapies, but then decided against it.  We have 3 asthma patients living in our home, one extremely severe, and the risk of catching Covid is just too great for us.  We've made the difficult decision to self isolate, and it's really benefited our family.  With the exception of allergies and a couple bad colds for Chris and I, we've all been healthy.  Usually, as soon as school starts, we've got a sick kid within a week or two.  And then the sickness travels through the house for the next month or two.  But because we've been isolating and keeping to ourselves, only Chris and I have been sick, and we've been the ones going out as needed (and Chris to work).  Chris and I have both been tested for Covid twice (negative every time), but the kids actually haven't been sick.  This has been the first time that everyone in our home has been completely healthy for several months at a time.  It's been really nice!

As we try to navigate our new normal, Chris and I have been trying to keep the kids busy, and learning.  Last summer when school got out in May, I had gone to Target and bought some educational workbooks for the kids to use over the summer, to keep them learning before they were able to start back to school in the fall.  Our kids love going to school, and are all about learning new things.  They've been watching Sesame Street since they were babies, and learned their alphabet and numbers while learning to speak.  When Edward was one and two years old, we had flash cards that we worked with him on, learning new words, and learning to count.  I remember Edward was able to count to twenty by age two.  He is incredibly smart, and it just blows us away!  The one thing that I've really begun to notice while teaching our kids at home, is that Edward is mini Chris.  That kid got his father's photographic memory, and he remembers everything!  I have what I often refer to as a Swiss cheese memory.  I can't even remember what I was doing two minutes ago, much less what I ate for lunch, or bought at the store yesterday.  I will literally walk into a room to do something, and then have to call Chris to ask him what I am supposed to be doing because I just can't remember.  My memory is non existent lately, but Edward is sharp as a tack.  Edward just turned 7 a month ago, but he remembers things from two years ago that I've completely forgotten all about.  He'll tell me things that I am completely astonished by.  I'll mention it to Chris, and both him and Edward will sit there telling me all about it, and I won't even remember it happening at all.  Edward's memory is flawless, but at the same time, he gets bored really easily.  Both of my kids have ADHD, so home schooling them comes with constant redirection.  We spent 5 afternoons a week doing school work last summer.  I had our days set up so they kids could play in the morning, go to therapy, eat lunch, take naps, do school work, then play some more before dinner and bedtime.  When the schools shut down in March because of Covid, I pretty much reverted back to our summer schedule.  I'm not a morning person, so getting up in the morning is really hard for me.  I am very grateful and spoiled to be a stay at home mom.  Even when school was in session, I would roll out of bed in the morning, get the kids ready for school, drop them off, then come home and go back to bed.  But now that we don't have the luxury of going to traditional school, things are completely different.  I still don't get up at the crack of dawn, but our days a lot different now than I ever thought they would be.  I sleep in almost every morning while the kids hang out playing on their tablets, playing video games, and digging through their toy boxes for whatever toy they happen to want to play with, that always manages to be at the very bottom.  But once I get up for the day, it's school time.  Like last summer, I bought a bunch of workbooks for the kids.  I spent about $70 on Amazon, buying new workbooks for the kids to use.  We still use the books for last year, as well as all of the workbooks that were sent home for Edward when school shut down.  We spend 1-2 hours doing school work every morning, then have lunch, and then I send the kids upstairs to take naps.  Nap time is mandatory in our home.  Even I take naps.  I love nap time!  It's really the only time that I have a quiet house, and can actually get things done without the constant barrage of questions, whining and fighting from the children.  But then after nap time, I get the kids snacks, and we go back to doing school work for a couple more hours.  We are usually done by 4pm (depending on how long nap time lasts).  Because my kids both suffer from ADHD, every couple minutes I have to remind them to stay on or get back on task.  I can't just give them a set of pages to work from, then sit down and do something else like read a book, because they need constant attention and supervision.  Unlike me, Edward loves learning math.  I completely stink at math, but at least only being in second grade, I don't have anything to worry about yet.  The other day, I taught Edward the concept of adding numbers and 'carrying the one'.  (I'm not really sure what exactly that is called.)  I learned math the traditional way, and the common core junk that the schools teach kids now completely baffles me.  I of course taught Edward to do his math the way that I learned to do it, and he immediately picked it up, and did several pages of work within only a few short minutes.  I was completely shocked, and so incredibly proud of him!  Math comes so easy to Edward, just like it does for Chris, and Edward gets so excited to do it, and blows right through it super quick.  It's incredible to see how excited he gets over doing it, and watch his little mind work.  I have never been excited for anything the way that Edward gets over school work.  That child absolutely LOVES to learn!  I always hated going to school, and would come up with reasons to convince my mom to not make me go.  But Edward is the opposite, and begs us to go to school.  The whole shut down has been really hard on him.  He doesn't understand why he can't go see his friends, and hang out with his teachers.  We've tried explaining that there is a really bad sickness, and that if we let him go somewhere, he could potentially get really sick and end up in the hospital.  Our kids don't understand that.  Over the last few months, my kids have stopped asking to go to school, probably because they've gotten used to the answer being no, school is closed.  But having their new workbooks, and getting them back on a learning schedule has really helped them have a sense or normalcy again, and not be so bored.  We also signed Edward up for a virtual summer school class through the University of Alabama this summer, which he absolutely loved!  It gave Chris and I the chance to see how well he would do with virtual learning, should we have to do it this next school year.  Edward did amazing in his class!  We spent a month learning about Optical Illusions, and doing fun projects on google meet, with the rest of the class.  Edward loved getting to interact with the other kids through the computer screen, and the adjustment really wasn't hard for him at all.  He knew what time his class started every morning, and would come wake me up an hour ahead of time, to remind me that he had class that day, and that I needed to get up and get the computer set up for him.  We are all registered for virtual learning for the 20/21 school year, and we are looking forward to school finally starting in a few weeks.  We are just waiting for our new school and district to give us the their plans, and the materials we need to participate.  But until then, we've got our new house all set up, and we are spending a few hours a day working out of all the work books I bought for the kids.  Edward spends most of his time doing math and language arts work, while Serenity practices tracing and writing her letters and numbers.  Our kids love to learn, and actually beg me to do work with them every morning.  it's pretty adorable!  What kid do you know that actually enjoys doing school work?  Definitely not me!  I've never been that person.  But my kids love it, and it makes home schooling them so much easier for me.  I'm not sure what this new school year is going to look like for us, but as of right now, it's pretty simple.  We wake up, play, do school work, eat, nap, eat and do more school work, then go play again.  And our PE consists of dancing around to loud music.  The other day the kids were bouncing around to the Spice Girls while I was blasting a 90's playlist from Apple Music.  It was so much fun!  We may not get to do traditional schooling this year, but the School Of Mommy is most definitely in session, and it's really not too dull.

Our new battle; Ectodermal Dysplasia

Edward brought me this picture tonight and was telling me "Mommy, it's a scary boy!"

Part of me was shocked and almost upset that he had seen the information I had stashed away in a folder, but at the same time I guess it's time for me to face reality. But then again, how do you explain to your amazingly too smart for his own good, 6 year old that the picture he is looking at, and the information on the paper in his hand could very well be his reality?

Unless you are a super close friend or have known me for most of my life, you likely have no idea that I've had major dental issues my entire life, and until recently I was always told that all those problems stemmed from being born with a pneumonia. My entire life I've been told that all of my dental problems stem from my super soft teeth caused by a very high fever and all the antibiotics the doctors gave to me save my life when I was just days old. I'm 36 years old and I've never understood how something that happened to me as a baby could possibly have caused me so many problems as an adult? I've questioned it for years, but was never able to find any answers until we moved to Mississippi, and the kids started seeing a new pediatrician in Hattiesburg. This guy looked at Edward then asked me about my history, and immediately called BS on everything that I've ever been told. He immediately told me that my problems weren't at all caused by the pneumonia, but that he was willing to bet that it was actually a very rare disease; tooth and nail syndrome, and that I needed to look into it. Tooth and Nail Syndrome (Acro-Dermato-Ungual-Lacrimal-Tooth (ADULT ) syndrome); one of about 180 different forms of Ectodermal Dysplasia.

For the last few months I've been doing a ton of research,and seen multiple doctors, and for the very first time in my life, everything is finally making sense!  All my problems that I've been dealing with for the last 36 years FINALLY have a legitimate reason for happening. My teeth are super soft and crumble if you touch them wrong due to a severe lack of enamel because I have a very rare genetic disease that only about 1,000 other people in the US have, and wasn't even diagnosed until 1981. I was born at the very end of 82, so growing up Ectodermal Dysplasia was basically unheard of outside of the team of doctors who diagnosed the first case. In reality there are probably hundreds more than the current thousand or so other patients with this same disease, but it is so rare that most people go undiagnosed, and untreated.

Unfortunately for my family, the genetic factor is pretty strong, and if one parent has the disease there is a very strong chance that a male child will also have it, meaning that Edward could also have it. Luckily for me, being a girl, the symptoms are a lot more mild than they are for males. It's been a really tough pill for me to swallow knowing that there is a high chance that I unknowingly gave my child a rare disease. I wouldn't wish this nightmare on anyone, especially not my own baby. But this is my reality right now, so we are dealing with it the best way we know how.

A couple of weeks ago I was fortunate to get into one of the few treatment centers in the country to have my diagnosis confirmed. Amazingly enough, everything is working out really well for us timing wise because Chris just got transferred back to Alabama for work, and I will be beginning treatment at the University of Alabama in the next few weeks. Our new house is only about 40 minutes away from the dental school, so I won't have to travel very far at all. I am very lucky because most patients have to spend years traveling across the country for treatment. I am very fortunate to be moving locally. It'll be about 18-24 months for me to complete treatment, and at the moment I have no idea what all my treatment will entail. They've already taken a ton of xrays, and made molds of my mouth. Right now we are just waiting on a phone call to let us know that they've figured out a game plan, and let us know what to do next.

I've been keeping all of this really quiet and not telling anyone except on a need to know basis, and I honestly don't even really know what I'm sharing now except that Edward being scared by a picture of another patient basically rocked my world. I completely hate what I am going thru, and I'm praying that Edward didn't get this awful disease from me. But then again, we are very lucky. Ectodermal Dysplasia may be tough to deal with, but it is not at all fatal, or contagious. We are both completely healthy and able to lead totally normal lives. We just happen to have a few issues that will be costing us thousands of dollars to fix. Things could be so much worse, so we are very fortunate. And at least if Edward is eventually diagnosed with me, at least he's got someone to go thru it with, who completely understands what he is going thru. We have each other, and we have Chris who is the most amazingly loving and supportive husband on the planet. We are going to get thru this as a family. Just like we have with everything else.

I've unknowingly battled this disease my entire life, especially the last 10 or so years. No matter what I've done, I've felt like a complete failure. I can't beat this on my own, and it's been making me completely crazy. Seeing the pictures of other patients is really hard on me because of the way I was raised. Growing up in California, my mom and sisters are so incredibly judgmental that they've always judged every single thing in my life whether it was my weight, grades, looks, hair style, personality, friends, music, literally everything. If you've known me a long time then you know exactly how they are and how snippy and judgmental they are about everything in life including themselves and each other. I've never been good enough and I've always been picked on and put down. It's been really hard for me to see pictures of other patients, and a lot of the time to even look at my own reflection because I can see this disease taking over, and it scares the crap out of me. I am having a hard enough time dealing with this on my own, but now I have my sweet baby boy that is being scared by it as well, and it is so unfair.  So if you see us struggling, or anyone else for that matter. Please make a conscious effort to not stare or comment on people who look differently than you do. No one is better than anyone else, and you have no idea what kind of battle anyone else is fighting. So please make a conscious effort to keep your judgmental stares and comments to yourselves. I can protect my kids from a lot of things, but I can't protect my baby from this. All I can do is ask for some respect and understanding. You have no idea what anyone else is going thru. So please be kind, and keep your judgment and rude comments to yourselves.

If you'd like to know more about what we are going thru, please feel free to ask, or do the research yourselves.

https://www.nfed.org/learn/types/acro-dermato-ungual-lacrimal-tooth-syndrome/

https://rarediseases.org/rare-diseases/tooth-and-nail-syndrome/

Serenity is all set to start school!

Our baby girl is about to turn 3, and is now all registered, tested, and ready to start school on her birthday! She will be going two mornings a week; Monday and Friday, and sharing teachers with Edward.  (Edward goes to Kindergarten in the mornings, and then switches to Pre-K at lunch time.  I will be picking Serenity up at the time Edward switches classes, so they won't actually be in class together except for special events.)  Last Friday, Chris and I took Serenity in for Pre-K testing, and today we got to go back for our first IEP meeting (for Serenity). Both of our kids now have an IEP (Individualized Educational Plan, which are similar, yet different.

The one big difference with Serenity's IEP meeting, verses Edwards, was that the school district special ed department lady wasn't at today's meeting. She was there with us last week, but she's been at each meeting for Edward. Serenity is only starting preschool though, so it's not like she's going into the full blown school system.  An IEP will normally last for 1-5 years, but Serenity's is only designated to last for 3 months because she is starting school about 3/4 of the way thru.


I pulled this image from Google, but this is what an IEP team looks like.

I may post Edward's IEP at a later date, but for right now, here is Serenity's.

As a a team, Chris and I discussed each of these pages with the team of teachers and specialists from the school.  We added a couple things to Serenity's plan, but otherwise, this is what her IEP looks like.  It details the things she is interested in and good at, her testing scores, strengths, weaknesses, and what help she will need to catch up to where she needs to be. 

It was pretty interesting going over Serenity's testing scores today.  She actually scored a lot higher than I expected her to.  I've always known that Serenity is smart, but I guess I've never given her credit for how much she really knows and understands.  I was pretty surprised and proud of her.  She likes to be like Edward, and do everything he does, so I guess it isn't too surprising that she scored so well.  Both of our kids are similar, yet they both land at different places on the Autism Spectrum, and a lot of the time it can be kind of confusing to determine just where each of them lands in comprehension of different things.  They are best friends, and do everything together, so a lot of the time, I guess I've just assumed that Serenity is just following Edward's lead, but never really knew what exactly was going on. 

The one thing that I did realize today, was just how far Serenity has come in the last year.  She's gone from not talking at all, to never stopping and driving me completely crazy!  We can still only understand about 50% of what she says, but she is doing incredibly well!  I think she is also ahead of Edward as far as hand eye coordination goes.  Edward isn't as coordinated at a lot of things, the way that Serenity is.  Serenity definitely scored higher in those areas than Edward did, but then again, I'm sure the testing is different for Edward's age group than it was for Serenity.  Serenity actually doesn't need occupational therapy the way that Edward does.  I don't know if it's because she's doing so well in the therapy that she is currently getting, or if she's just ahead of the game, but Edward is definitely more delayed in that area.

I think this IEP is pretty self explanatory, so if you have any questions or concerns, please feel free to leave me a comment, or send me a message and I'll be happy to address it right away.

Family Updates And Report Card Time

It's been a long time since I last posted.  We had a really great holiday season.  The kids were super excited for Christmas, and for the very first time, weren't afraid of Santa!  The city we moved to over the summer, brings Santa through town on a fire engine the Sunday before Christmas.  I was super excited to find out about it, and couldn't wait to take the kids outside to see him.  I was a little bit nervous because my kids have been afraid of Santa for years.  The only time we've had a positive Santa experience, was when Edward was 5 months old, and Chris and I took him to get pictures with Santa. That was the only time we haven't been faced with kicking and screaming.  Last year, we avoided Santa altogether, because we knew it wouldn't go over very well.  But this year, was a complete game changer! With Santa coming to our turf, things went super smooth.  The kids were super excited, and watching out the window with their shoes and jackets on, while I was watching online, waiting for Facebook updates from our city mayor, about where Santa was, and what neighborhood he would be hitting next.  When I saw the post that our neighborhood was next, the kids were already trying to get the door open to run outside. Edward took off toward the fire engine as it was coming down the street, and climbed right up to see Santa as soon as it stopped in front of him. Serenity was a little bit nervous, but once I assured her that everything was ok, and lifted her up to join Edward next to Santa, she was thrilled to be standing on a fire engine. I got some cute pictures, and the kids had a great time! We are hoping that next year will be just as great.

We've learned a huge lesson in the Autism life lately.  Shortly after Edward started school, I canceled all of Serenity's therapy appointments with the new therapy center that the kids had started going to, because they just weren't making much progress, and the therapists that the kids were seeing just weren't connecting with my kids, the kids weren't happy, and it was beginning to be a HUGE hassle to go there.  Plus, I swear the speech therapist had it out for me. Every single time she saw one of my kids, she had a problem with them that she would bring to my attention.  Whether it was Serenity having muscle tone issues, or Edward having something else, I was getting seriously annoyed.  Never once, in the entire time that I've been a mother, nor in the year or two that I had been taking the kids to get therapy, had I ever been bothered with any sort of problems, much less things that were so quickly dismissed by both Chris and I, as well as our pediatrician, as non issues.  I finally asked the doctor to call the therapy center and basically tell the lady to shove it and do her job, because I was so annoyed with her idiocy. A couple weeks later I was told by Serenity's ENT that I needed to call the state Early Invention office to get help for Serenity, so I did that, and she's been getting all of her therapies thru them, and the therapists come to us!  I never have to leave the house for therapy, and it's been so much easier. Serenity is responding a lot better than she was, and making a ton of progress. She gets both Speech and Occupational therapy, in home, twice a month.  Speech for 30 minutes, and occupational therapy for an hour.  It has made a world of difference having the therapists come to us.  Serenity is always super excited to see them, and opens up really well.  Before, when we were going out to the therapy office, some days were better than others, but a lot of the time Serenity would take 90% of each session to finally start to open up and participate.  But now that her therapists come to us, she is definitely more comfortable and excited to participate.  She actually starts to get upset when her time is up, and the therapist needs to leave to go to their next appointment. It's such a huge improvement from before, and it's been great to watch!

Getting Serenity's therapy thru Early Intervention is about to come to an end for us in the next few weeks.  The state only provides the services to children under 3 years old, but they work with the local school district to integrate the kids into the school system.  Next week, Serenity goes in to do all the testing for her to start Pre-K, as soon as she turns 3 next month.  We are excited because she'll be sharing Edward's Pre-K teacher, who we absolutely LOVE.  Edward still goes to Kindergarten in the mornings, and then switches to Pre-K after lunch.  Serenity will be going to Pre-K in the morning, but then I'll be picking her up at lunch time when Edward switches over.  The only time they will be together in Pre-K will be for special events.  Having them both in school every morning will definitely make my life a little bit easier.  I am looking forward to going back to bed for a couple hours.  I may eventually get myself a gym membership, and attempt to go exercise while they're both gone, but I'm not sure.  I'm kind of lazy.

Edward's report cards came home the last few days.  Yesterday was officially report card day, but because he's got several teachers, and an IEP, we've been getting reports sent home all week.  Edward is doing really well in school.  He's definitely not at all the same kid that he was when he started school back in August.  He has grown and changed so much, and it has been such a privilege and blessing to watch.  He is learning to read, write and spell, count, etc. Lately, Edward has been asking how to spell different thing that he wants to do on his tablet.  There are so many different apps on there, that it gets tedious having to scroll thru the endless list to find what you want.  I recently taught Edward how to hit the search button, and he now types in what he wants.  He knows how to spell Mario, Everleigh & Cole (he LOVES watching the Labrandt family and Everleigh opens toys on YouTube), Ryan (Ryan's world also on YouTube), Bounce Patrol, and a few others.  It is so exciting to watch Edward learning to spell.  We are so proud of him! Every day he is asking us how to spell different things.  As I sit here typing, Edward just asked me how to spell YouTube. He doesn't quite realize that he doesn't have access to YouTube on his tablet.  He only has access to select videos that both the Amazon Freetime department have pre-approved for him to view. Having the tablets for the kids has made a huge difference in our lives.  There are so many educational apps available to them, and it has really helped both our kids.  I'll do blog about the Amazon Fire Tablets that we got our kids at a later time.

Here are Edward's report cards that we've received this week.  He's definitely made some really great strides over the last 9 week, and we are so proud of him, and excited to see how well he does in the next 9 weeks.

IEP & Making progress in school

About a month ago, Chris and I sat down with Edwards teaching team to finalize his IEP (Individualized Learning Plan).   I don't remember too  much about the meeting because I was focusing so much on Serenity making a mess with crackers and french fries, and also everything they were telling us that Edward is behind on.  The one thing I do remember though, that kind of upset me, is that they mentioned the possibility of holding Edward back from first grade at the end of the year.  He was behind the other kids at the end of the year because he never got to go to Pre-k like everyone else did, and because of it, he's been going to Kindergarten in the morning, and Pre-k in the afternoon.  It's kind of cool because he's basically doing two grades at a time.  The hope in doing this is that Edward will learn the social skills that he lacks, and be able to catch up to where the other kids are at.  Right now, I feel like he's probably completely caught up, but we'll see what the teachers have to say about it. I REALLY worry about him being held back a year, and having to redo kindergarten next year, because it's not something that I want.  I know it's perfectly normal, and has been really beneficial for other kids in the past, but it's just not something that I can accept.

My entire life, my mother and siblings have always referred to me as the dumb, fat, ugly, stupid, no good, worthless, child. Not a single one of my 3 siblings likes me, nor does my mother.  And because of it, none of them have any relationship with my children.  They all know that both my kids are autistic, but that's it.  No one ever calls, or texts me.  No one checks on my kids, sends gifts, etc.  Not a single one of them care.  To my "mother" and siblings, my kids don't exist and are therefore the same "failure" that they think I am.  No matter how well I've done for myself, or how much I've bent over backwards to help out, and to do nice things for them, I've never been good enough.  Having a 4.0 GPA during my senior year of high school wasn't good enough.  Always having a full-time job from age 16 on, while still going to school full time, and keeping my grades up, wasn't good enough. Being entirely self supporting from age 16 on, was never good enough.  They've always treated me horribly, picked on me, and called me horrible things to my face.  To this day, they still do.  And a lot of it, they've begun doing to my kids as well.  It's really hard for any parent to accept that their child has a disability, but it's been even harder for me because of my "family".

I haven't told very many people that Edward is in both Kindergarten and Pre-k this year. The last thing I need, is to hear my "family" start insulting my son, calling him horrible names, and making him feel completely worthless.  I don't need to hear their nonsense, and my five year old doesn't deserve their nastiness at all.  He's 5, and he's autistic.  Subjecting him to horribly mean people isn't right, and I refuse to do it.  I might not be able to do it forever, but for right now, while my kids are still little, they have absolutely nothing to do with my "family".  When they are older, and I feel like they are able to make informed decisions, my kids can choose for themselves, who to have a relationship with.  But the fact that my "mother" and siblings make absolutely zero effort to even remember that my kids exist makes me feel pretty confidant that my kids will be safe from their drama for a very long time.  They don't call, come to visit, text, nothing.  My "family" has no idea the extent of my kids' autism, or the challenges that they face, and I plan to keep it that way for as long as possible.  My "mother" and younger sister have already said horrible things to me about my kids after finding out that they were diagnosed with autism, and none of them have even seen my kids in years.  My mother has only met Edward 3 times in his life, and Serenity just once.  It's pathetic!  They have absolutely no right to ever comment anything about my children, yet they do.  But considering that they know absolutely nothing about me, and walk around telling anyone that will listen, all about how horrible I am, there is no doubt in my mind that they say the same things about my kids.  They aren't good people at all, and I know for a fact that if they knew that Edward is in both Kindergarten and Pre-k, I'd constantly be hearing about how "stupid" and "worthless" my son is. And heaven forbid Edward be held back at the end of the year . . . I just can't handle that nightmare. My younger sister is a kindergarten teacher, with a "degree" in "special education", yet she knows absolutely NOTHING about Autism, and loves to tell me what horrible, misbehaved terror children I am raising, and how I'm a terrible mother, blah blah blah.  I seriously baffles me how hateful some people can be, especially "family". But that is just the way those people are, and there is nothing that I can do to change it.  And trust me, I've tried!

Edward's progress report came home today, and I am very proud of him.  My close friends and extended family have all noticed a HUGE change in Edward since he started school a few months ago, and he continues to grow and learn every single day.  Before he turned 2, Edward knew the alphabet, could identify most shapes, and could count to 20.  Before starting school he could count to 40 or 50, and identify all shapes and letters. Unfortunately, Edward is super shy, and doesn't like to participate in an environment that he isn't comfortable with, so he refused to participate in the tests that his teachers were trying to do, to determine his skill set.  It drove me crazy because I know how smart Edward is, and I kept telling his teachers that he knew the stuff, but he needed to be able to prove it to them, and Edward just wasn't interested in participating.  Instead, he completely withdrew, and would crawl under the tables in his classroom, trying to hide, or lay down on the floor, and hide his face.  It made me really sad, and I almost wanted to go sit at school with him, and let him sit on my lap, just so I could help him through the day.  Edward wasn't able to sit still when he was supposed to, wasn't able to join the class for carpet time, without messing around, and wasn't interested in socializing with the other kids. Plus, we had been working to potty train him for over a month (because he's completely refused for the last several years, every time we've tried), and was having a really hard time with it because he refused to use the bathroom on his own, and screamed bloody murder, throwing a massive fit every time Chris and I told him to go use the bathroom.  Edward was put into Pre-k to work on those skills, and I want to say that he's mastered them.  I absolutely love Edward's Pre-k teacher, but I'm just about ready to ask if he can go back to being in Kindergarten full-time.  I feel like Edward is ready.  He's clearly making progress, he can count to 100 and brags about it, which most kids his age can't do. Part of me wants Edward's teachers to come to me, and tell me that they want to move him back to Kindergarten full-time, but the other part of me doesn't think that they'll even consider doing it unless I ask.  I'm not quite sure what to do, but judging by the progress report that came home today, I think he's ready. Today was the last day of school before Thanksgiving, so I'll be thinking about what to do over the next 9 days, then approaching the subject with the school from there.

In other news, I had a meeting with Edward's pre-k teacher the other day, as well as Serenity's Early Intervention care coordinator, and I signed the paperwork to transfer Serenity's care to the school system and soon as she turns 3 in February.  She will have the same pre-k teacher as Edward, only she will go to school in the morning, and I'll be picking her up at the time Edward switches classes.  Right now, Serenity is receiving in home Speech Therapy, twice a month for 30 minutes, and she'll be starting Occupational Therapy, also in home, on Monday, which she'll get twice a month for an hour.  I love that Serenity's therapists will come to us.  It makes things so much easier for me.  I don't have to fight Serenity to get her dressed, and in the car to go somewhere, and she is much more comfortable being home, in her own environment.  The day we met her new speech therapist, Serenity was excited to see her walk in the door with a bag of toys to play with, and was more than happy to sit there playing with her.  Normally, Serenity is like Edward and will shut down and hide from new people, but I guess it's different when she's in her safe space at home.  It will be interesting to see what happens when she switches to the school system in February, but Edward's Pre-k teacher is amazing, and the sweetest lady in the world.  It's literally like having Grandma around.  Or at least that's how I feel about her. As much as I am looking forward to Serenity starting school, I'm also dreading it.  Serenity is my baby, and I am just not ready for her to be so grown up, and start doing big girl things. Part of me wants to keep her little forever, even though I know how completely ridiculous and impossible that is.  Serenity is growing up, whether I like it or not.  Right now, her biggest thing is not wanting to wear a diaper anymore.  Chris and I don't think that Serenity is necessarily ready to be potty trained, because we don't think that she is capable of telling us when she needs to use the bathroom, but right now, she's changing her own diaper several times a day.  Every time she wets, she changes herself. And if she has a bowl movement, you had better get to it before Serenity does, or it will likely end up all over the floor, the walls, and spread over Serenity's entire body.  She's kind of disgusting.  All of that is supposed to be a sign of being ready to potty train, so this next week will be spent attempting to teach Serenity to use the bathroom.  I'm sure things are about to get very interesting in our house for a while.

Here is a copy of Edward's IEP, and also the progress report that came home today.  I just realized that I failed to take a picture of his report card when it came home a few weeks ago, but that's ok.  I am super proud of my little boy, and everything that he has accomplished.  He is a completely different kid than he was when he first started school.  He's hard a tough year with us moving, and leaving behind his awesome therapy office, all his friends, and the only home he's ever known. He's basically started his life all over again in a new state, but he's thriving now, and I couldn't be happier.

I hope everyone has a wonderful Thanksgiving holiday, and I'll probably post again next week.  Please leave me comments if you would like to, and if there is anything that you would like to see or hear about, or if there is something that you are concerned over, or of course if you have any questions, please feel free to drop them in the comments, and I will definitely include them in future posts.