Five Years after His Autism Diagnosis (and being in our hardest season since then)

Five years ago today we sat in child-sized chairs in a room that was part office, part exam room in an elementary school and heard “We believe your son has autism.” I sighed with relief and sat up straighter in my tiny chair, ready to hear the plan. Lee tensed up and teared up. That first year was hard.

Right after the diagnosis you hope your child with be one of the miracle cases. You do all you can to make that happen. We read every book, saw tons of doctors, did all the therapies, and took 10 different supplements, including b12 shots.

Slowly we figured out what worked for James and for us. We accepted that James has level 3 autism and even though he won’t be what we first considered a miracle case, we have been blessed with little miracles: partial potty training, answering yes and no questions, eating a bigger variety of foods.

But we are currently in our hardest season since that first year.

The transition to Texas hasn’t been easy. In PA we had a team of great doctors (family doc, GI doc, psychologist, dentist, and a homeopathic doctor). A team of therapists (our occupational therapist is one of my best friends and our behavioral therapist was a mentor to me). The best school situation we could have imagined (ABA classroom, amazing teacher, aides who cared for him, a TSS (one-on-one) who really got him and helped him so much). And a church full of people who had known him since he was four months old and who had built an entire special-needs ministry that started with him and reached so many more families. Our county had one of the best support groups I’ve ever heard of, with monthly meetings and tons of free events for families like ours. 

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Now, we can’t get him in therapy without paying thousands of dollars out of pocket. The doctors I want aren’t in our insurance plan. His class is completely different, with no ABA and less speech and occupational therapy than he was getting before. And church is different because they don’t know him and we have to tell his story all over again every two months as the helpers in the class he’s in rotate through. 

IMG_2101But, like that first year when everything seemed hard, we can find the good. We have a fenced in yard James can play in all year round. We are making friends with his classmates’ families and hopefully creating support and community. We live near my parents, where James asks to go every day, feeling as comfortable there as he does at our home. 

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I’m trying to remind myself it took us almost five years to build what we had in PA and I can’t expect it all automatically here in Texas. Our years in PA were a gift from God. Being here in Texas is a gift from God.

Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change. James 1:17

I’m praying for His strength and grace as we rebuild what we once had.

4 thoughts on “Five Years after His Autism Diagnosis (and being in our hardest season since then)

  1. Thank you for sharing your story.
    You are and inspiration!
    Praying for you and James in your new home. Praying Gods blessings on you and James and that He would put teachers and doctors and friends in your lives to encourage and lift you up everyday.
    May He fill you with perfect peace and joy unbounded.
    Sincerely,
    Linda Thoma

  2. Sweet momma – God’s grace and faithfulness to you and James and your family is so apparent in your writing. As I was reading, my heart ached for you as you listed all the things that you *could* find wrong in your current situation. However, you choose to see the good. You choose to see God working in you and in your situation. How that blesses me! Praying for you as you are still transitioning to your new home and environment. Praying that James receives EVERYTHING that he is entitled to. Praying that God continues to bless you in ways that you cannot fathom. I feel a sense of connection as I’m in Texas too, and I’d love to know where you’re living because if you’re even remotely close, I’d love to meet you and have our boys meet! My oldest is on the spectrum as well. Please email me if you’d like, but I totally understand if you don’t! mommywainman@yahoo.com. God’s richest blessings to your family!

  3. I’m the creator of TexasMedicaidWaivers.com and I’m a friend of many people at Covenant Community Church Pearland. If you need help figuring out which services work with your income, let me know. I have 2 children with Down syndrome & I work for the state Medicaid waiver called CLASS as a case manager. I also own TxACD.us if you have communication issues.

    • Thanks so much Heather! I’ll check out your sites!

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