The last few weeks of waiting for approvals, evaluations, meetings as well as traveling quite a bit has given me some time to think through a lot of junk floating in my brain. So, this post doesn’t necessarily contain a lot of new, exciting information but was still necessary for me to write. So, feel free to skim. Or go do something else. 🙂
Lisa and I have come to the conclusion that Jake does not need speech therapy. His speech is not clear, but it isn’t technically delayed. Children under the age of three receive speech therapy only if their brains are not functioning properly. After assessing Jake a few weeks ago, we realized that there is nothing wrong with his brain. His brain is communicating properly, but the rest of his body doesn’t understand. Almost as if his brain speaks English, but Jake’s body only understands French. We just have to work on getting his body and his brain to speak the same language.
We’ve also realized that Jake still desperately needs therapy for his sensory disorder. Jake still struggles in his environment, even though we have seen improvements. Jake loves going down the slide at the playground now, but still refuses to touch his food. He can manage the feeling of sand and dirt, but the feeling of a cheerio on his bare stomach can cause a tantrum. His meals are still taking close to an hour, and Greg and I are both fatigued from having to sit with Jake and prompt almost every bite, every chew, and every swallow.
He needs more help and thankfully, the school district has finally approved our appeal to have Jake meet with an occupational therapist evaluator. She will meet with us four times and decide whether or not Jake meets their requirements as being significantly below standard. It’s hard to have to wait and not be sure if he will get the services he needs or not.
Lisa will continue to meet with us until Jake is evaluated and then we will decide if we are no longer qualified for services (please, no!), if Lisa will be given permission to work with Jake’s sensory issues, or if we will be assigned yet another therapist. As I have said many times, waiting is not my favorite and I’m trying to put to rest all the doubts, worries, “what ifs”, and silliness until we know something for sure.
This week, I blazed through Temple Grandin’s book, Thinking In Pictures: My Life With Autism, as well as Thorn In My Pocket, which is her mother’s version of raising an autistic child. The books are revolutionary, heart-breaking, insightful, and courageous. I am so thankful that I read them (thanks, Mama, for the recommendation!), and read both of them with tears in my eyes.
If you have a child on the autism spectrum, or with Sensory Processing Disorder, these books will help you understand your child. I now have insight into how Jake feels after reading an articulate account from a woman whose sensory system was broken. I also have become even more thankful for the trail that was blazed by Temple’s mother, doctors, therapists, and teachers who refused to see our children as stupid, retarded, worthy of abandonment, or useless. I even see the forerunner of Jake’s little Benik Vest in Temple’s squeeze machine that she fashioned to help her deal with an overloaded sensory system. I wish I could meet these women and thank them from the bottom of my heart for their stubbornness, courage, tenacity, and ability to think for themselves in an era that did not encourage women to be adventurers.
The books also helped me remember, or maybe re-discover, what I need to be doing for Jake right now.
My job, along with reinforcing the therapy that he receives every week, is to help Jake appropriately function in his world. This morning, a thread on Jake’s pajama bottoms became detached and started to bother him. He pulled at it, crying and gradually getting more agitated. I had to force myself to let him get through the tantrum part of it, dodged the bricks he threw and made sure that he wasn’t hurting himself, waiting until he asked for help the correct way. If I come help him in the middle of a tantrum, Jake will understand that Mama always helps, throwing a tantrum gets attention, and he won’t learn how to calm himself and to behave appropriately. (This is pretty much what every mother deals with, it’s just more intense when her child has a sensory disorder since almost anything, including their pants, can trigger a tantrum.)
No mother wants to see her child struggle through life, to be stressed out, anxious, angry. I so often have to restrain myself and let Jake process through those emotions and learn that I can’t and won’t just fix everything for him. There are times when after the storm passes, his jammies aren’t bothering him anymore, when Jake has finally acted the right way, that I shed a few tears and pray again, fervently, that we are doing everything we can for him.
Since my grandmother’s journey Home a few weeks ago, life has been a little weird. I’ve been grieving, traveling, starting a new job, preparing for a renter to move in, started to co-teach a bible study on chronic pain, as well as to continue teaching my little group of preschoolers once a week. I could use your prayers in the next few weeks as I settle my grief into the right place, try not to spend all my energy in only one part of my life, and find the energy to continue to advocate for Jake. It all feels like a lot right now and I’m trying to slow down, be quiet, and listen to what I need to do right now.
One thing that has been echoing in my heart over the last month is thankfulness. I’m thankful for our family, friends, our church, our therapists and doctors and the time they spent helping us. Last night was a prime example of how all of the work we’ve poured into Jake can condense down into a single moment, leaving me stunned with joy and thankfulness. I sat with Jake on our back porch swing and rocked him while we watched a brilliant (and rare) Colorado sunset. Jake actually sat still, was focused enough to look at the sunset and say, “Mama, light!”. And, as he turned to me and saw the tears pouring down my face, he touched my tears, laughed, hugged me and said, “Ah-loo!” (I love you).
I love you, too, Jake!