Just.

Standard

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.

Advertisements

About rhapsodyinautism

I'm a Mom of two little ones-- a two-year-old son newly diagnosed with autism spectrum disorder and a baby girl who is too young to make any guesses. I work a little bit from home for an environmental nonprofit, and I am a freelance journalist. I love cooking, singing, and autumn weather. And I'm married to a brilliant, involved Daddy. My son is an auburn-haired smartypants who loves trucks and jazz. He taught himself the alphabet at 20 months. He has a beautiful social smile, but he finds eye contact aversive. He is the reason I am writing this blog... because there is a huge lack in legislation, funding, insurance coverage, and understanding in regards to autism spectrum disorders. This will be my place to advocate, tell the tale of our journey, and hopefully share a few tears and laughs along the way. This is our family life, and we have embraced it.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s