Thursday, October 22, 2015

The New Diagnosis

Many of you know that last winter we had a QEEG done on E. I didn't post the results because I wasn't ready to talk to everyone about it, and also because as E gets older, I want to respect his privacy on social media. However, I try to keep my friend list limited to people that I actually am friends with & want in my life (and not many outsiders read my blog), and as I've joined new Facebook groups & become more involved in a new community, it has become obvious enough that I've gotten several private messages asking me about it. Additionally, if we want to encourage acceptance and understanding, we can't exactly hide in the dark.

E has Asperger's Syndrome. Yes, he still has Attention Deficit. He is also profoundly Dysgraphic. As hard as it was to hear this news, T & I have always suspected that he might be on the Spectrum. We are in the process of seeking new educational assistance for him and appreciate your prayers about this process. Please pray for E too; middle school is hard for everyone. For E it has been a bit brutal.

You can Google Asperger's and you'll find good info about what it is or look back at some of my recent posts about it. What Tom and I want you to know most though, is that E is still E, an amazing kid, incredibly bright, with heart and feelings and the same need for love and acceptance as anyone else. Talking to him and relating to him may seem complicated or intimidating but I promise you that you will love him if you get to know him. He loves insects and Minecraft and Percy Jackson books. He loses himself in video games after a long day at school where he must keep his anxiety & behavior in check. He doesn't like to make eye contact with people he doesn't know. He doesn't like very loud noises. He struggles with organization. He has one friend, a boy he met at our church, who also has Asperger's. E is a smart alec and annoys his sister who yells at him but also would do anything to protect him. He will spend hours putting together a complicated Lego set but usually only for display, not play. He is a black belt in mixed martial arts. He likes fishing and jumping on the trampoline.

Many people celebrate Autism Awareness Month, putting up blue lights and wearing t-shirts with puzzle pieces on them. Awareness of Autism is never a bad thing. But it can't stop there. E had an incident with a classmate last year that occurred mostly because this other student was annoyed and didn't understand that he was just trying to talk to him. I later told the guidance counselor that I knew the student would be disciplined for what he did, but that his punishment didn't interest me. I would much rather the student be educated about Asperger's so that he can have more patience in the future, or at the very least just leave E alone. Tell your kids that if another kid is strange or says the wrong things or seems clueless about social cues, that kid isn't trying to be annoying, he might just be different and that's ok.

I need to say one more thing. Over the years T and I have gotten lots of advice, suggestions, and understanding. Family & friends have loved us, loved E, and prayed for us as we strove to raise our wild child. We are so grateful for this; we are just so thankful for family and friends who love us well. We're happy to answer questions and talk about our experiences in order to educate or encourage others. Unfortunately there have been some along the way who have said things that were at the least not helpful and at the most/worst, very painful. If you have been one of those people and you're realizing it now, please know that it was forgiven a long time ago and we hold no grudges. But I think I need to make it clear that going forward, I'm just not having it. Unless you are E's therapist, case worker, guidance counselor, special education director, instructional assistant or God, then we do not need your input. We already have an entire team of people and unless you have a neuro-atypical child then you cannot truly understand or offer advice. What we need, what we've always needed, is love, prayer, & support. From our hearts, THANK YOU for giving us that.


Tara said...

Thanks for sharing, Shay. I wish we lived closer -- it sounds like Jace and E have lots in common, and I think they'd get along great together. Miss you!

William Smith said...

May E find God and His Creation wonderful and I pray that he gets some amazing friends too. Thanks for sharing your heart, your joy, your pain and your hope in Christ, Shay

Theresa said...

Thanks for this post. I am coming in a little late. Reading blogs is not even on my list of things I would like to do, unfortunately. I am so thankful for our friendship. We have walked a similar path over the years and I just don't know what I would do without you. I know that E is exactly the way that God intends him to be. He is loved. And he is amazing. I will continue to pray for wisdom for you and your precious boy. Love you!