Thursday, June 13, 2013

Apraxia - Unexpected Break From Speech

Last Thursday Luke's SLP surprised me with the suggestion that we take a break from speech.  We had just come back from being gone for vacation, and it kind of felt like it came out of no where.  Her reasoning was that Luke's attention has gotten to the point where he's not able to focus enough during their sessions to benefit from them.  She had mentioned to me on and off over the last few months that his attention was sometimes a problem, but I still never expected this.  It's not a short break either...we're done with PROMPT until around his 5th birthday in November.

I left there very upset.  I had hopes of being done with speech soon, but my hopes were more along the lines of DONE.  As in he's doing so well we don't need speech anymore.  So to be told that he was no longer progressing in speech due to other issues that have come up, was upsetting.  The other thing that upset me was she suggested getting him into Child Find.  Our experience with Child Find almost 2 years ago was far from positive, and I have no interest in going that route again. 

Any parent that has been dealing with Apraxia for awhile knows that other obstacles often go along with an Apraxia diagnosis.  Sensory Processing, Fine Motor, ADHD, Dyslexia, etc.  Sensory issues have been suggested for him in the past, and on Thursday, his SLP mentioned ADHD.  I'm not going to go into it too much, but we have had concerns at home too.  The last thing I want to do is jump to any kind of label for him, especially since he's still only 4 years old.  But I also want to do right by him, and make sure that he receives any help that he needs.

Adding to my frustration, we don't have a developmental pediatrician anymore.  Our last visit was last August, the doctor we were seeing then now works for Kaiser, and we can no longer see him.  After my talk with the SLP, I was upset with myself for not finding another doctor before now.  But there's nothing that can be done about that.  So I first contacted Children's National, only to be told that they're so booked they're not taking new patients for the foreseeable future.  S.u.p.e.r.  In that moment, I was right back to where I started 2 years ago when I was desperately trying to find someone to say yes or no to the Apraxia diagnosis.  I refuse to sit back and do nothing, to let time waste away.  I finally found The Kennedy Krieger Institute in Baltimore, MD.  No appointments before November, but it's better than nothing.

So we're faced with what to do between now and then?  My biggest concern is to not let his speech regress.  He has come SO far, I hate the idea of any of it going to waste.  So I'll be working with him at home some, using apps on the iPad, and some printables that I've found through Pinterest.  My other goal is to work on his attention.  He goes from one activity to another very quickly, and my hope is to extend the amount of time he'll spend on one thing.  We're also getting him involved in sports to provide an outlet for his energy, and to get him in group settings more.  Finally, through preschool, I plan to work on sensory and fine motor issues using Montessori style activities.


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