Here I sit to ponder once again on April being Autism Awareness Month. Of course, I want to write something flowery, but in autism, the real of it is that it is not always pretty. Sometimes, it is hard for me to be vulnerable and to let you in my world because sometimes it is ugly and hard; who wants to hear that? But then again, life for all of us is sometimes ugly and hard, right?!
Being one of the older moms here, I am cautious about what to share. I know when Sam was younger, I was intimidated by those along in years, but I hope somehow you find encouragement and hope in what I share.
I want to be the one to say my severely non-verbal autistic son is now speaking and doing fantastic, and who knows, maybe someday… but for today, that’s not where we’re at.
As I wrote that, I was reminded of my younger days as a Christian. I was separated from my husband, and all these marriages around me were being restored. Unfortunately, my first marriage wasn’t restored and ended in divorce. I could have blamed God but instead trusted Him to bring me through. As He did, I learned that I could trust Him, even with my disappointments.
It is not that I wasn’t honest with God. As He and I talk about EVERYTHING, I am honest with Him about the pain, confusion, joy, and victories. He gets it!
I hope to convey to the younger moms that I see you!! I get it!! Some things will get easier, while some areas still have their challenges.
As I sit to write this, it has been a week! Sam has had three good weeks, with giggles and joy of his new program, but here we are… at yet another bump in the road. You see, Sam still battles with non-verbal autism and cannot tell me what’s bothering him. We always know when something is wrong because of his behaviors and outbursts of yelling and hitting himself. The mouth sores are back with a vengeance, almost cyclical. The rest is a mystery – does his head hurt? His stomach? Is he constipated? (In his younger years, you would know, but since he is self-sufficient in the bathroom, it’s not always evident. Sorry if that’s TMI – for those in the autism world, it’s real, and they’d understand and know they are not alone).
In any case, it’s been a season, and I know there are other autism mommas out there wondering, will it get better? The truth is, there have been seasons when Sam is doing well, and I forget. We seem to coast in those seasons, as though the tough times are over. I remember when my autistic grandson was seven and lived with us for a while, I forgot all the hard that we had come through, as Sam was in an ‘easy’ season.
But then times like recent ones remind me that we have had seasons before and will get through. At these times, I pray, “God, you know better than I do what Sam needs, and I trust you.”
When you hear the words that your child is the most severe they have had, and they’re not sure what to do…
-like in kindergarten, when I felt Sam needed a one-to-one. They didn’t think it would happen, but after a meeting with all the higher people, a door opened because, for ‘that season,’ it was what Sam needed.
-like the season in elementary school when Sam struggled on the bus, and we needed a one-to-one for his safety and the safety of all the other children.
-like the time in elementary school when they were doing construction on the school grounds, and Sam’s hearing was so sensitive that the drilling sounds went right through him daily, so we had to fight for outplacement.
– like the season through puberty, he needed an aide on the van for a short while.
-then, there was the time when the school system wanted to bring him back into the district. They had built a new high school with a special wing. I knew they had never dealt in-house with someone with Sam’s needs; it was an educational time for everyone, to say the least!
– here we are again, in another season, proposing a one-to-one for Sam in this new program. Hopefully, it will be for a season until he acclimates to its newness.
I say all of that to say that autism has many faces. There are those on the Asperger’s end, like Temple Grandin (which I guess isn’t politically correct to say anymore; I think it’s referred to as autism level 1), and those on the other end of the spectrum that are nonverbal with different needs. Autism varies on all levels and degrees thus it’s a spectrum disorder.
The truth is, many in our world are aware of autism because of Sam, but sadly enough, that is not so everywhere.
I was recently somewhere and felt like an outcast because of Sam’s outbursts. In most cases, people understand, but unfortunately, some still feel like our kids should be locked away.
Well, we are not going to put them away!
In cases like our Sam, if you look closely enough, you will see incredible seasons, too.
-there are seasons of joy when he gets that grin and giggles from every fiber of his being, and you can’t help but catch that joy with him.
– there are seasons when he is in his ‘happy place,’ church. He loves the music and the clapping, and I am so thankful to be part of a community that loves him.
-there were seasons of victory, such as Sam playing in track and field with his high school team, thanks to an older gentleman and a classmate who walked/ran alongside him.
The truth is that we all crave connection as human beings. God built us for a relationship—with Him and with each other.
Individuals on the autism spectrum do not always know how to convey it, but if you look closely, you will find it! For Sam, it might be in a game of cards or a song. It might be engaging him with his ‘Talker,’ if you want to volunteer to hang out with him, Mom might even show you how to use it. 😊
When you see our kiddos, please know we do not want pity. We want you to see the amazing children we see and love. If it is a hard moment, we might need your patience (and a prayer), or you can celebrate with us if it is a good moment.
Look for the gold – it is in each of them!! And it’s in you too! Thank you for being part of our community. ❤
SHEILA BOUCHARD 