My son had an MRI on Monday. He had genetic testing at the end of December, and we are still waiting on results. We’re doing the Gluten Free Casein Free diet, but his digestion is still perplexing despite his ability to move his body much more (he started walking up and down the stairs holding onto a railing AND there are brief glimpses at fingerplays AND successfully using a fork in certain situations sometimes since losing gluten and casein). We had him evaluated by a SLP at the Children’s hospital where he was deemed to have language abilities at age level, but nevertheless and expressive language disorder with pragmatic impairments to say the least. We’ve got a solid therapy schedule. We’re monitoring seizure activity in a diary. We’re doing everything we feel like we can do within reason.
I think my husband and I are coming to realize, though, that we might be at the end for now when we get the results to the most recent testing. This is an ever-changing journey as our son shifts between different developmental stages and regresses in certain ways while speeding ahead in other ways. Things make sense and don’t make sense, but we have a rhythm. And we’re now in a place where we need to accept that we might not get any explanation from the testing we have had done. We are very responsible for getting this testing done– things need to be ruled out (we are not just desperately searching here). We might hear good things– that there is no chromosomal disorder or abnormality in his brain. He might just be diagnosed with autism spectrum disorder.
It might just be autism spectrum disorder.
Why is that so hard to accept? The vagueness? The vastness? The ambiguity… the uncertainty in what could be clarity… just autism.
Am I ready to hear that? I’m not sure. But I need to prepare myself.