Autism: Our Journey Thus Far

Some of y’all know, we had Josiah evaluated (almost 2 years ago) through our local school district for a few things, and the results were consistent with autism spectrum disorder. Before and since then, I’ve had mountains of feelings and thoughts about everything, and while I’ve shared with a few, I have mostly kept it inside and the burden has become so much that I feel like I absolutely have to get it off my shoulders in order to not feel so alone and hopefully gain some support in this area.

That being said, what you’re about to read may be long and is probably going to be all over the place so proceed with caution. But please, please proceed especially if you are family or a good friend-- I deeply desire your awareness and encouragement.

It’s hard to even articulate the facts that we’ve been given. I find it difficult to even say, “Josiah’s autistic” or “He has autism” or “diagnosed”. Does that mean I haven’t even accepted it? That I haven’t accepted him as he is? Or that I haven’t accepted that label defining him? And because I never posted about it from the get-go, I have felt like, “oh they don’t know, so I can’t say something random about today’s struggle because they won’t get it and there will be too many questions” but then it just gets more and more and more difficult to share because of the lack of sharing. But I can’t really keep it in anymore, so I’m gonna write a bunch of random thoughts and then maybe I’ll feel more freedom to keep it up afterwards.

Back story: I first suspected something was wrong (Dyslexia? Autism? Sensory? Etc.)  a couple years ago and told my homeschool moms’ group about my concerns. They prayed for me and afterwards, one of the moms who has an autistic son, pulled me aside and basically said, yep, I’ve noticed, I’ve prayed, I’m so glad you said something, he’s autistic. I cried. And after I left, I spent the rest of the day worried that she was right and mad that she would dare diagnose my son. We have become better friends since then and she’s been a great support but at the time we didn’t know each other very well so it was upsetting.

It took me several months to get him tested but we finally did it and got the results in February of 2016. They (the school people) said if you enroll him, here’s what we can offer, if you choose not to, here’s what we can offer. We chose to continue homeschooling and utilize the services that were still available to us, which is speech therapy. Now he has no trouble pronouncing words, but pragmatics is what he works on with the therapist (social communication). 30 minutes biweekly. He’s been going ever since and I think it helps.

I’ve struggled with the thought of whether we should put him in public school but so far there hasn’t been a clear YES to do so. Frankly, while it may help in some ways, I know there would be a whole new set of issues to deal with. Like, ok, these professional people could help him in special education and what-not, I wouldn’t have to deal with him all day, but then what about bullying and public school is SO LONG and he already has a hard enough time with the minimal amount we do here. I wouldn’t say we have “good days and bad days” but that just about every day, we have good, easy, fun, I-know-that-he’s-learning moments, and “It’s too hard, I can’t do it, Why do I have to do this, Why does everybody hate me, I’m just so dumb, I’m hungry I’m tired I’m bored My tummy hurts” moments. I have to remind myself that there are good times ahead, to push through the hard times, reach out to my homeschool mamas for a pep talk and once again things are good.

Great news! Josiah was given a scholarship through the Blue Autism Project organization to go to a social skills camp at The Missing Peace autism therapy center in Keller. It’s 10 weeks long, once a week for an hour and a half. They will be learning about appropriate conversation topics, two way conversations, entering and exiting conversations, appropriate use of humor, choosing friends, etc. I’m so excited for him to get to go and so grateful for the provision and looking forward to seeing improvement in this area! While he HAS friends, I think carrying a conversation where he listens to the other person, stays on topic, and observes their reactions to him speaking, etc, could definitely use improvement. He enjoyed the first day so yay! I almost cried before they started, just sitting in that room, looking around at the other parents and kids that “looked normal” but of course were on the spectrum, and the place had scriptures on the wall and all these positive phrases and just felt like, ok, a place to belong and find hope and support.

He also started karate yesterday and liked it, so I’m hopeful that it will be good for him.

Yesterday was really rough trying to get part of school work done. Anytime he doesn’t want to do something, we have a talk and it turns into this huge ordeal where we discuss the deeper things going on in his heart and mind. Which is good but almost always troubling. Like, I find out he thinks everyone hates him and he thinks I didn’t teach him right and he’s not sure if God even exists, and he thinks I don’t actually care about him or love him even though I say I do. It’s heartbreaking and I’m often left speechless because I just don’t know how to help him. I try to reassure him but I’m left with just feeling like I’m not big enough to reach his heart but I know God is so I pray that God fills in the gaps where I miss it and that He heals his heart and that He gives us wisdom on how to help him with these big big feelings.

It’s hard for me to tell people that he is autistic. I don’t want to use it as an excuse when he has a meltdown in public but at the same time I want people to understand why. But then I think, if I don’t say anything, will they assume it’s a disciplinary/parenting fail? And then I think, who cares what they think? Usually I just address him privately and let “them” think what they will. Some of my friends know, so maybe they understand. Of course I can’t blame every negative behavior on autism.

I’ve wondered if there’s somewhere I went wrong. Like is it because of x, y or z when he was a baby? Or is it because abc happened when he was 2? Or because we moved when he was 4? So many what ifs. Is it diet? He’s super picky. Maybe not as picky as some, but there are just certain things he likes and others he doesn’t and it’s frustrating because I feel like it’s a vicious cycle. Diet affects behavior so we try to change his diet but he won’t eat certain things. And it’s not like other kids where you can just say, well, no dinner for you then. They go to bed hungry and things change. Nope, not here. There’s always a good excuse why he can’t eat whatever it is. It makes his stomach hurt. It’s too spicy. It’s hard to argue with that. So while I can cut out what I know is bad, that leaves us with a very limited array of choices. So I’m just hoping this will improve to help him improve in different areas.

Is it video games? Do I ban them completely? Do I make certain rules? Been there, tried that.

We recently watched the whole first season of this new show on Netflix called Atypical. It’s about this 18yo boy on the autism spectrum, his family and struggles as he starts to date. While I wish the show could’ve left out a lot of raunchy language and sexual discovery outside the covenant of marriage, the series definitely had its merits. You see his quirks and struggles and strengths and I just had so many Awww moments! We laughed a lot, and it made me feel like, OK, this is one example that I can relate a lot to. Almost like, yeah, if this is what autism (sometimes) looks like, then yes, Josiah is for sure autistic. I don’t really like the label, but it made me feel almost at home, like ok, he’s not alone, we’re not alone, we just need to find our tribe of people who get it. Who accept him and can help us accept our reality and do the best we can to help Josiah reach his full potential.

When I do tell people that his evaluation was consistent with ASD, I sometimes get questions, like what does that mean, what is autism, etc. I find myself at a bit of a loss. Like I just want to say Google it, that’s what I did. It means different things for different kids. Apparently they don’t use the term Aspergers anymore, but instead “high-functioning autism” as in, maybe you wouldn’t realize someone is autistic at first because they’re verbal, and otherwise “normal”. For us it means, sometimes things have to be a certain way. The picky eating thing. The very easily upset thing that turns into yelling and hitting himself or pulling his hair and can’t calm him down thing. The not responding when someone talks to him even though his hearing, pronunciation and vocabulary are just fine for his age, so he appears rude and I constantly have to remind him to respond to them, but sometimes that means no eye contact and you can barely hear his words. The frustration with if he can’t do it perfectly he doesn’t want to do it, and it’s not ok to make a mistake. The obsession with Legos. The only wanting to wear gym shorts and a T-shirt and crocs or flip-flops. The talking your ear off about Minecraft even though I don’t let him play very often. The not saying “I love you” back and not wanting to hug but then wanting to snuggle just at bedtime. The blurting out something totally unrelated to the conversation. The genius way he figures stuff out that I couldn’t even do. The creativity when he builds or makes up a story or game. And a hundred other things that just make him who he is, but when you put them all together, some people say, that equals ASD. To which I can’t figure out which to say: 1. Thank you! Or 2. Um, no, that’s just his individual personality and quirks and some behavior issues we need to address just like so many other kids. Gah.

I have days where I feel good and hopeful and notice his awesomeness and we get along and have fun and I have days where I break down in tears because I just don’t know how to help him through a rough time and wonder if he would’ve turned out differently if he had a different mom.

Last night we started watching another show “Parenthood”. I saw it on the menu and remembered people on FB raving about it when it was on the air and thought, ok I’ll give it a shot even though I know nothing about it. Well, shoot. The first episode and this kid Max is probably autistic. Didn’t know that was gonna be a theme. It’s like I can’t get away from it, haha! I’m hoping this will be a good show.

Ok, I think I’m gonna stop for now (this was actually written in two parts, a couple weeks ago and today) but plan to write more as time permits and I feel the need to share.

Please feel free to ask questions but know that I don’t have all the answers and I just really need support. To all our family and friends who know and spend time with Josiah, I hope that this information will serve to help you know a bit better how to relate to him and you can explain to your kids whatever you feel is appropriate and beneficial for their relationship with him. I love you and am so thankful for your love for our family.