I’ve said it enough, you are probably convinced, that hearing the word autism and your child’s name in the same sentence is devastating. A gut punch that hurts. It seems like a forever pain but it does ease up through the years.
This past summer, I got this text from one of Jacob’s cousins: I’m not sure if mom has told you about B having so much trouble in school and they thought he had dyslexia. So today we went for some testing. They said he is not dyslexic but possibly autistic. We have to go for further testing and see. I have cried for the past 2 hours.
(Side note—I feel like this niece is half mine. She is 5 weeks younger than my other son. Once my sister commented that her daughter is so much like me. She definitely has occupied a place in my heart for her whole life. To know she is hurting makes me hurt, too.)
My response: Oh sweetie, I love you and wish I could hug you tight right now. He is going to be okay and so are y’all. Your mom mentioned quite some time ago that school was a struggle for him but that was the extent of her comment. There are so many layers to autism and his may be more of a learning disability and on the high end of the spectrum. If that. Nothing I’ve seen with B screams autism but my exposure has mainly been with the non-verbal, severe end. The testing center may or may not agree with what you were told today but they have great physicians who can point you in the right direction. Keep me posted. I am not in the know or part of any groups that would have relevant info for kids his age. I will be a listening ear if you’d like to talk or cry. Oh, how I love you. God loves your family more.
Three months later while we were out of state for a weekend getaway, I got a text from my sister: N wanted me to text y’all to tell you that B has officially been diagnosed with autism.
Even though I knew it was a possibility, goodness it felt like another punch in the gut. We were hanging out with friends but my mind was far away.
There were so many things that I quickly marked off as ‘nothing like Jacob’. But the one thing that wouldn’t leave me is how a special needs child will always need their family more. Sometimes a little more and sometimes, a lot. A parent would do anything to save their child from pain, embarrassment, frustration, heartache. That’s the part that weighs so heavy—we want to carry the burden for them.
The blessing here is that this sweet boy has a really, REALLY wonderful family. A brother with a heart bigger than Texas:
Parents who will always fight for him and grandparents who will go the extra mile. Great grandparents, aunts, uncles, cousins who are cheering him own in whatever he sets out to do. And most importantly the love of God the Father.
My niece shared this a couple of weeks ago: This past year our B was diagnosed with autism spectrum disorder, sensory processing disorder, and auditory processing disorder. He is smart as a whip but struggles academically. This has been a year of learning and understanding how his little brain works and functions. He is our special gift from God and we know HE has Mighty Plans for him! If you know B you know his smile is contagious, he is so funny and quick-witted. He loves tractors and can fix anything!! Our world is better with his beautiful soul!
Family ties born decades ago will always be there offering support and understanding—a strong, special bond. Our family tree has very deep roots that can weather the storms of autism.
Is it unusual to have autism in multiple members of a family? Unfortunately, I personally know families who have more than one sibling affected. What about first, second, third cousins? I haven’t read enough to answer that. There are genetic researchers and scientists on opposing sides of causes and cures.
I do know this—God is not taken by surprise and has already put the right people in place for HIS purpose to be fulfilled in our families. Those people may be relatives or they may be friends that are so dear and near that they are ‘like’ family. We are both fortunate to have friends in that category. Just today I got a text from a friend. I read it out loud to my husband and said again, “we have the best friends”.
I want to be perfectly clear. Would we have signed up for the autism club? Honestly, no. Now that we are members, do we want out? No. Do we wish life was easier for Jacob and precious B? Absolutely, yes. Are we thankful God chose us to be parents to these boys? YES! A million times. YES!
This is my bottom line—autism in families does make them special. They often stand out because they are different. Different is good. And by being transparent about our struggles, I hope it helps you embrace our differences and those you notice in others. Ask questions, keep judgmental thoughts to yourself, extend a helping hand, be kind, try empathy instead of apathy.
It’s tough for our boys when they realize they are not able to do something as expected. Imagine how scary their world is when it looks, sounds, smells, tastes, and feels altogether different from their perspective versus ours. Applaud their bravery!
In this month of Autism Awareness, I wanted to take this opportunity to introduce you to my great nephew.
And by great, I sincerely mean GREAT!