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.

 

A very different kind of Halloween

I've always looked forward to Halloween, my entire life.  I guess I'm a junk food junkie, because any time you can get candy for free, I'm totally up for it! Even when I was too old to trick or treat, I would find some little kids to go with.  When I turned 18, and had my own car, I still went Trick Or Treating.  Only, I went to my grandparents house, where I knew they wouldn't laugh at me, and would still give me candy.  A year or so later I found out that even though their neighborhood was packed with trick or treaters when we were little kids, and Grandma would take us out, they hadn't had any kids come to their house in years, and the candy they bought was actually for me.  Every year they knew that I would be the one coming, so they bought candy just for me.  And they LOVED doing it! I even got a phone call one year making sure I was coming, because they were at the store buying me candy.  My grandparents were amazing, and I miss them so much!  I know that if they were still alive today, and I didn't live an entire country away from them, they would be buying my kids their own candy, and be super excited to have their own special trick or treaters, every single year.

Even after I moved away from home, I've still managed to go Trick Or Treating every year.  I'm one of the oldest grand kids in my family, and I've eagerly volunteered to take the younger kids trick or treating every year.  My aunts and uncles love it!  They no longer have to trek around the neighborhood with their kids, getting exhausted while their kids run around hyped up on sugar.  Instead, they can pawn their kids off on me for the night, and I'll bring them back with bags of candy, which I'll then take my "parent tax" from, before leaving to go back to my own house.  I'm the best "big cousin" in the world! For those who haven't heard of the "parent tax", it's the candy you earned the right to confiscate from your children by taking them out to get candy for hours on end.  Plus, I had the rule for my younger cousins that they had to walk, no running, they had to stay out of people's yards and on the walkways, AND they had to say Thank You at each house.  If at any time the kids didn't follow all the rules, I got their candy from the house they "messed up" at. After the fist year, of taking my cousins out, I was getting less candy from them breaking the rules, but they learned that I was going to take my share of their loot via the parent tax, so they were happy to give me their bags so I could take my favorite candy, and then go away so they could devour the rest.  I have to admit, I raised those little turkeys really well!

Now, as a parent myself, things aren't too different, except that my kids are autistic, and Halloween is pretty different than it was for me in the past.  When Edward was younger, I would dress him up, and take him to as many Halloween events as I could.  I was the mother who took her 3 month old baby Trick Or Treating.  Although, I did have my younger cousins with me that year, too.  I love candy, and any excuse to not have to pay for junk food myself, if a good enough excuse for me to go load up.  I'm a kid at heart, and when it comes to Halloween, I refuse to grow up!  But then things changed a couple years ago.  When Edward was 2, he wasn't interested in wearing a costume.  At the time, he was completely obsessed with the movie Frozen, and loved the character of Olaf, so I ordered him an Olaf costumer from Amazon.  Edward refused to put the costume on, and screamed bloody murder when I tried to dress him. He's done the same thing ever since.  Edward loves candy, and gets super excite to decorate the house, but he doesn't want to wear a costume.  He'll cry and beg me to buy him a costume every year, and act super excited about Halloween, but then when it comes time to put the costume on, he refuses.  This year, I tried for days to get Edward to wear his Mario costume.  I had every intention of taking my kids to every Halloween event in town.  Edward didn't want to go, and threw a fit every time I tried.  I'm still pretty bummed about it, but every year I hope that maybe next year things will be different.  Maybe next year, Edward will be more excited for Halloween, and then we can go to a ton of events. He's only 5, so maybe next year?

Serenity is completely different.  Serenity has no cares in the world most of the time.  She's happy to wear anything that you give her.  She'll go through 5+ outfits a day if you'll let her, and it makes for a ton of laundry for me. Serenity was thrilled to put on her Minnie Mouse costume, and go get free candy.  She couldn't wait to go Trick Or Treating!  I just wish Edward could be as excited.  Luckily for me, this year was much easier than last.  Even though Edward refused to wear the Mario costume he insisted that I buy him, he argued with me a little bit, but then happily put on his Mario pajamas (which are actually completely identical to his costume), and was super ready to go Trick Or Treating, but got angry that we had to wait for Daddy to get home from work, and Daddy was running later than I had instructed him to.

Other than when Edward was 2, we've always gone Trick Or Treating as a family.  We do everything as a family. For the last couple years, the kids have been reluctant to talk at the first few houses, and it's meant that Chris and I have to knock and say "Trick Or Treat" and "Thank you", but after the first few houses, the kids catch on, and are thrilled to do the talking themselves. Edward was diagnosed as Autistic, non verbal when he was first diagnosed.  He would only talk to us, sporadically.  But now that he's been getting speech therapy for the past couple years, it's rare for him to not be jabbering about something.  He's extremely quiet around strangers, but once he gets to know you, he never shuts up. Serenity is different though.  She was diagnosed as non verbal, and has yet to progress very much. She's two years younger than Edward, and was diagnosed at a much younger age, so we know that her leap of progress is coming, but it hasn't happened yet.  She's speaking more now than she was a year ago at her diagnosis date, but it's definitely no where near as much as other kids her age.  We only understand maybe 20% of what Serenity says, but that's ok, because she's still little and learning. Not everyone progresses at the same rate, and that's perfectly ok.  Serenity will get there. Both Edward and Serenity are polar opposites of each other.  They are both autistic, and while Edward is no longer non verbal, Serenity still technically fits the diagnosis. As I am typing this, Edward is standing next to me with his tablet, singing his ABCs. Serenity on the other hand, is walking around playing with her toys, and watching Mickey Mouse Clubhouse.  Every few minutes, she'll go stand next to Edward and watch what he's doing, before going back to doing her own thing.  Serenity knows the ABC song, but you can only understand parts of if while she sings.  Just the other day, I pointed to a few letters on a sign at the park, asking her what the letters were, and she only knew a few.  Edward can identify very letter, and has been able to do so since he was Serenity's age.  He could also count to 20 before turning 2.  We haven't done anything different with either kid, except for starting therapy at a younger age for Serenity.  We watch a lot of Sesame Street (on youtube) and lots of Mickey Mouse Clubhouse.  Both shows teach basic learning concepts like shapes, numbers, counting, colors,letters, etc. I am not at all against allowing my kids to watch tv, but I do make sure that most of what they watch is at least semi-educational. Both Edward and Serenity have learned a lot about different things, just from watching tv.  While I've tried to work with them on things myself, they're just not interested when it is Mommy trying to teach them.  They would rather learn things from Mickey Mouse, so I've learned to be cool with it.  Plus, there are some awesome learning videos on Youtube, so I'm happy to let my kids watch them.

Every kid on the Autism spectrum is different, and you can't expect that some thing that works well for one autistic child, will work for the next.  My kids are polar opposites of each other.  However, there are also kids that mine my two look completely "normal". One Autism family that I really admire and look up to, is Cooper's.  Cooper is almost 8 years old, and completely 100% non verbal.  Cooper is on the severe end of the Autism spectrum, while my kids are more toward the other end. While I've been struggling with my kids this week, wanting them to have the most amazing Halloween in the world, Cooper's family has been fighting an even tougher battle.  Check out their story here.

https://www.findingcoopersvoice.com/2018/11/01/parents-whose-kids-wont-trick-treat-tonight/

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.

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

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