A few years ago I wrote an essay for the Age of Autism about the holidays and the mixed feelings they bring. One point I made was that our family could no longer look like all the families in the beautiful Christmas cards I was receiving because autism had changed everything. Not only were we sad and overwhelmed by daily life with autism, but the disorder had made it impossible for James to even pose for a picture so we couldn’t fake it even if we tried! But I also mentioned that our family had grown in ways that only struggles can induce and I was grateful for the saviour who came for the broken and for the hope found in the words of another struggling friend who said “somehow we hope the mystery of Love is birthed each day in being broken and being poured out.”
Four Christmas’s later we have a whole new “autism” to consider. We have a son who is communicating in ways we never dreamed. He is cognitively and intellectually intact and has a life that we never imagined. But he still has many challenges and struggles. As much as I want him to “appear” normal and to live with ease it is still difficult. We had a family Christmas party this weekend and it was wonderful to see everyone but James didn’t do well. He reverted back to some habits that he had when he could not communicate. These habits are slowly disappearing but they are hard and why do they seem worse when we are around extended family? When we got back home he told me that he got overwhelmed at the party because “they all doubt me and see me as the autistic boy I was. I am not that boy anymore but I fall right back when I am with people who knew me then.” I disagree with him about them seeing him that way but I understand that is how he feels. I asked him to write about this experience for the blog and he kindly did!
I recently wrote an explanation for my poor behavior at a family event. Basically I became overwhelmed by everyone’s expectations that I ended up fitting them. My teacher tells me that this is normal, but autism makes it worse. People tend to judge based on looks. I look like I am stupid. Yet here I write this message. I cannot say my thoughts, I repeat dumb phrases, I cannot move right, and I am like a baby when I am upset, but I am smart and thoughtful. I wish people could ignore my appearance and know my soul, but that is human nature. It takes a special person to look beyond my autism.
My family was given this opportunity with RPM and they changed their view of me, but people I interact with infrequently have not had this opportunity. Therefore they expect autistic James instead of the teen I have become. I gave them a boy I no longer recognize and do not want to be. My message? Expect the best of others and see past how they look. Your attitude can make a difference.
James and Brooke, thank you for sharing that – I am left speechless and inspired. James know that there are those that love and accept you unconditionally! As far as I’m concerned, you don’t have to prove anything to anyone. I understand your frustrations and admire your strength and courage. Please never give up showing us how to be better people! Merry Christmas!
You said, “I look like I am stupid.”
I don’t think you look that way at all! But I admit that I may not be objective. I’m “invested” in you, you know.
The Word teaches us not to look on the outward appearance but rather on the heart. As flawed human beings, we’re all works in progress in that regard.
Don’t fret over your slip ups at the family Christmas party. Put those mistakes behind you, James, and move on. In other words, forgive yourself.
See you in class in a few weeks!
Oh, and Merry Christmas!
Hi brooke, and james.
I was wondering if isaac could come visit. He turns 9 in 11 days. He doesn’t talk right now. He lost his language just like james, but we found out he can read. I’d really like to see if James can connect with him. Talk to you all soon.
James & Brooke,
thanks you so much for this explanation. It is so helpful to hear both of you express what is going on inside.
I want to be part of the team that helps you go deeper.