It occurred to me the other day that in just a few short weeks, my sweet baby boy will be 6.
How on earth is that possible? I honestly just don’t know.
It also occurred to me following that first shocking thought that it has been nearly 3 years since Jackson’s solid diagnosis with Autism and a sensory processing disorder. That is also surprising, but what really touched and delighted me about that realization was to note just how far Jackson has come in these last three years.
Jackson has been attending full day school since then, and rides the bus there and back each day (something I NEVER thought he would do). They have helped him immensely when it comes to things like following steps to complete a task, waiting in line (and just being more patient in general), taking turns, sharing, I could go on and on.
He has also made great strides since we started attending Speech and Occupational Therapy outside of school as well. We’ve been going for almost 9 months and Jackson’s therapist has helped him learn almost 10 new signs in that time and how to communicate more effectively through gestures in general.
After almost a year of Jackson sleeping horribly (and me being a walking zombie half the time) we did a sleep study to address these issues and found great help through one of the Sleep Clinic doctors at Texas Children’s Hospital…and now we are both SO much more happy…and rested.
This summer has been amazing as I finally mastered the perfect balance of therapy and downtime to keep Jackson on his routine, but somewhat rested. It took me 2 summers to find the right ratio for him…but it feels good to know I finally pulled it off. He’s even been taking swim lessons and LOVING them!
And then, early this month, we finally got to have an appointment with The Autism Center at Texas Children’s….after being on the waiting list for almost 2 years. This was an appointment I’ve been dreaming about, seeing specialists who have worked with patients on the spectrum for years and truly understand the ins and outs of Autism.
One thing that his new doctor there suggested we do right away was have a full panel of genetic tests done along with some metabolic testing as well. These tests may determine or rule out some of the underlying causes of his Autism, but it is not certain that they will. Mainly, it as a good next step so that we can have the most complete understanding of his Autism and genetic make-up in general.
The tests they are running are:
An Acylcarntine Analysis
A CMA Comprehensive
Fragile X DNA
An Organic Acid Urine Test
An Amino Acid Plasma Test
A Lactic Acid Test
An Ammonia Test
(for those of you who aren’t doctors, like me, I’m just as overwhelmed as you are since you read that list)
If these tests show that there is an underlying cause to Jackson’s Autism either from a predisposition or another issue, we can research things further or in the case of metabolic imbalance, work to correct it.
Part of me is thrilled we finally found a specialist willing to run these tests and look into way to help Jackson thrive (the HOPE in my heart guys…it’s just overflowing)…and part of me is horrified these tests will reveal something worse we do not yet even know about.
BUT…I’m trying to stay positive and look forward to the fact that no matter what the tests reveal, these doctors have Jackson’s best interest at heart and an amazing set of resources to help him.
Of course, as soon as hear back on our test results, I’ll be sure to update everyone here.
Until then, if you feel like keeping some positive thoughts for us, we’d be most appreciative.