Autism in our Household

Autism is an interesting thing. It's not something I ever thought we would have to worry about. I didn't really know many people who had kids on the spectrum and I remember distinctively remembering, what are the odds that we'd have a child with autism? Many probably don't think about this before having kids, but I have a friend who had kids already and it was always a concern of hers because it is becoming more prevalent and she did know people who had kids on the spectrum. When Ethan was born with congenital scoliosis and missing/abnormal ribs, autism was the last thing on my mind. Despite everything, he was SUCH a happy baby and SO expressive. When I started noticing a change around 14 months, my heart broke. I remember calling early our intervention coordinator and expressing my concerns, I was bawling on the phone to her, wondering how on earth we can possibly handle another HUGE obstacle when we already had our hands full with surgeries every 4-6 months until Ethan is done growing. I hate to admit how scared and upset I was by it, like ugly crying into my pillow and sobbing, but I knew he was on the spectrum. I saw the changes- not responding to his name, perfectly happy playing on his own, sensitive to kids crying, not pointing and starting to have eating issues, not sharing his excitement in things he did, no words and limited babbling. His eye contact was okay... it wasn't great, especially with others, but there was some. After paperwork was completed, we were on a wait list to have him tested and at 20 months, he was diagnosed with autism. We wondered what that would mean for him or if it would get better or would things get worse. I think I always felt that things would get easier as he got older because he would continue to grow developmentally and socially. In some ways it has gotten easier, but in many ways it’s gotten harder. Since Ethan was diagnosed, his visual stimming has worsened and he spends quite a bit of time in his own world stimming on items or looking at things in a different way. He now makes clicking noises when he stims. His eating habits have worsened, he doesn’t feed himself and his variety in foods are now very limited. He gags at the sight or smell of food or when you make him try a new food, or even a food that he once enjoyed. He thrives on routine and structure and at almost 5 years old (in Feb) he still doesn’t talk. He is getting better with echoing sounds if told, but he also has apraxia of speech, so even though we’ve heard words, they disappear because it’s like his brain doesn’t know how to remember them. He used to say “Up” and now when you ask him to say it, he can’t. He tried, but his muscles don’t form his mouth the correct way and his brain doesn’t remember. Right now we are using a communication device through the public school system and he is doing well with that, but he won’t carry on a conversation with you, or even tell you that he wants a drink or is hungry. I always have to have a drive available to him and offer food and snacks often. He is not potty trained. This is something we are going to work on once we get home from Florida after Christmas/New Year break. Our ABA therapist has the program ready to go and we are going to hit it hard once home in Jan. It seems like a very daunting task, only because I think, how on earth is he going to tell me when he needs to go to the bathroom when he can’t tell me he wants a drink? Or is he’s in pain? Or tired? I actually didn’t change his crib over to a toddler bed for this very reason, I felt he’d get out of bed and hurt himself climbing on something or that he would never sleep. Luckily, he never tried to crawl out of his crib until he saw a video of toddlers doing it on youtube. Dan was deployed and I was worried, but I converted the crib to his toddler bed because I didn’t want him falling and hurting himself. He was SO excited and wanted to go up constantly to play in it, but I had to put a baby gate back on the stairs because I wanted him to know it was a place for sleeping, not playing. He did AMAZING! For naps he would get up and roam around, but at night time, he wouldn’t get up at all and when he woke in the morning, he just laid there and waited for me. I’m glad I’m a light sleeper so I can hear if he gets up and also because he doesn’t make much noise when he wakes up, so him moving around in bed when he wakes up is what wakes me up. After Christmas last year, my mom came back with us and I found a bed on facebook marketplace that someone was giving away. It’s a twin bed from IKEA that can be a loft bed or flipped and on the ground with a canopy, which is how we decided to have it. We painted it Gray and it looks amazing in his room and he absolutely loves it. He still does amazing in his bed, so fingers crossed that the potty training will come easier than I’m expecting it to.

I’ve been feeling a bit down lately, I think because of the holidays and how it’s a reminder that things are different for us. Halloween for instance, Ethan won’t dress in anything and doesn’t understand costumes, so I got a little onsie type dinosuar outfit thinking he would be okay in it for his school party. Nope. I’m not going to force him with going door to door to get candy because he doesn’t understand that concept. If we knock on someones door, he expects to go in and when we don’t, he gets upset…so imagine him having fun with that…not possible right now. And I hear, “Well, it is a strange concept, going door to door asking strangers for candy”, which i get….BUT… it makes me sad because even though a weird concept to us, for kids it’s amazing and it’s fun and magical and they get candy. It’s something they can enjoy and they love dressing up.. it makes me sad because he misses out on that. He doesn’t get to experience that joy and have that experience that most kids get to enjoy. The same goes for Birthdays and Christmas. He doesn’t really play with toys, he has to be taught to play with toys. In therapy a car in given to him and the therapist says, “Ethan, do this” while showing him how to take a car in his hand and move it back and forth. It breaks my heart that my child has to be taught how to play with things and I do wish things came easier for him. My family asks what they can get him for Christmas and it’s literally a guess game. I try my best and most times we find stuff for him that he likes, but again, he needs to be taught how to play with toys. He doesn’t experience joy when opening gifts on Christmas morning and he doesn’t get excited when that gift is opened and he sees it. These are things I wish I could change for him, the ability to have joy and experience things as most kids do. Ethan is a pretty happy kiddo, he does show joy in other things, which we LOVE, I just wish we could see it more.

I read a blog recently on Finding Coopers Voice about how she always knew her son would talk. She hoped that one day it was going to happen, but it hasn’t yet and he’s now 8. She wrote how lonely it was not being able to have a conversation with her child, how quiet car rides were when it should be the child talking nonstop about their day. About how much she didn’t know about her son because he couldn’t tell her. I can relate so much, so many times I’ve gazed down into Ethan’s blue eyes wondering what he was thinking about. He has many moments lately where he just starts laughing out of nowhere. He will wake up laughing and laugh in bed until I go get him, he will be on the couch and start laughing uncontrollably and he’s been doing it at school a lot. I know he’s thinking of something funny he has seen, but I SO wish I knew what it was.

I’ve met many other families and moms with autism since Ethan has had his diagnosis and they have been a godsend. There are times when you feel left out, either because your child doesn’t give a friends child what they need in a friendship, so the play dates stop or just because they assume you are busy, but it still doesn’t hurt to ask, that isolation can be tough. Ethan used to have a really hard time with kids, for a year he would breath hold and pass out, kids scared him so much. He’s getting better, but still has his moments. We try not to put him or ourselves in situations where we are set up to fail. We don’t go out to dinner because we know it would be hard for him to sit there in an overstimulating environment. We do try to get out and do what we can because we don’t want to make things worse by keeping him in the house all day. He is doing so well and actually loves to be out and about.

Surgeries and autism combined SUCKS. There’s no other way to say it. They. Are. Horrible. Luckily, we have somehow been able to wait longer in between surgeries and he hasn’t needed them every 4-6 months like normal, THANK GOD. He’s had 4 surgeries so far, each one worse than the last, but he should really be on 8 or so, so we are so very thankful for that.

We are getting a service dog in June for Ethan, it’s been a long time coming, but I know it will be so worth the wait. We will go to Ohio for 2 weeks June 10-21 for training and to bring our dog home. I know this will help with many things and I can’t wait to see the joy this dog brings him. He deserves the world.

With the holidays here, I just wanted to share some thoughts, how autism is in our household and just get some feelings “on paper.” 4 day weekends to most are a dream, but our reality is a bit different. Being out of routine and stuck inside because it’s cold and rainy out make for very long weekends and lots of meltdowns.

I think the hardest thing of all is seeing a younger kiddo doing things that Ethan can not…and effortlessly doing so. Wondering if I will ever truly know my sons thoughts and dreams. If I will ever have a conversation with him. I’ve often wondered how I can miss what I’ve never had, but I do, more than anything. I love my son more than life itself, but I do wish things could be easier for him. I love being Ethan’s mom and will do anything for that boy. He is my light. I hope he will be able to share his thoughts and dreams with me one day, but if he can’t, I will love him just the same…I just hope the world can be as kind to him as I am. He is a beautiful soul and I’m so very lucky to be his mom.