On March 31 and April 1, Aidan had his first visit (of 2) to Marshfield Clinic. During this trip we discovered that Aidan does, in fact, have developmental dyslexia. This came as no real surprise for Mies and I, since he has been struggling with reading, not hearing sounds, reversing letters, etc. I think I may have mentioned this suspicion in an earlier blog. The good news that emerged from this trip is that the school jumped on this diagnosis and Aidan has been receiving remedial assistance, and has made some HUGE improvements in less than a month's time. He's no where near where his classmates are in reading ability, but he's been working hard with both Title I and pull out services. Plus, when he goes to the after school program two days/week, they've been working with him on his spelling words, which has brought up his spelling grade!
The second phase of the Marshfield experience is coming soon. On the previous trip, the 2 professionals we saw; one pediatrician and one neuro-psychologist, both felt Aidan was on the cusp of either Attention Deficit Hyperactivity Disorder (ADHD) or Pervasive Developmental Disorder (PDD) (the later was formally PDD-NOS, but I think the DSM-V or DSM-5 is dropping the "Not Otherwise Specified" portion). On this trip (round 2) he will meet with one more psychologist, also with a speech therapist and an occupational therapist. It will be an all day thing, a long day for all of us, but especially Aidan.
This is where is gets a bit nerve-racking. I've always felt Aidan has sensory processing issues, he reacts negatively to the Me-Protocol and to gentle massages from a massage therapist. His legs hurt if he stands or sits in one place for longer than 2 minutes, so he needs to "stretch"(his words). He needs to sleep with several blankets on him, all year round, or in the summer, he will "cocoon" himself in his sheet. He's very clumsy, always falling, stubbing toes, tripping, etc. He always falls out of his chair or if he does sit successfully, it's on his knees while leaning over a table to write/draw. Noises and motion are highly distracting (and not in an inattentive way). Now try and take all those issues and sit and learn in today's classroom! I dare you to try and learn with all this going on in YOUR body. I don't feel he is either PDD nor has ADHD, but has Sensory Processing Disorder (SPD). And yes, I'm a little angry (like that wasn't obvious). Not with anyone/anything in particular, but it is distressing when you have one child that has external issues that affect them, let alone two.
The sad thing about SPD is that it isn't recognized as a learning disability and hard to get services just for SPD. Most children who have SPD are misdiagnosed as being either autistic or having ADHD, since SPD is prevalent with those diagnosis. A common phrase I hear is that everyone on the autism spectrum (like Andrew) has SPD, but not everyone with SPD has autism. Similar things said about ADHD.
So, now, we wait, wait for the visit to see where they place Aidan. I'm positive the OT will see his SPD and the speech therapist will see mild speech apraxia. [Side note with my speech concerns: when the ENT removed Aidan's tonsil and adenoids (when Aidan was 3 yo) the doc. told me that Aidan's soft palate was having a hard time sealing against the back of the throat (?), but he told me it would correct itself--what if it is affecting his speech ? I don't know]. One might think that with all the "experience" we have in the world of Autism Spectrum Disorder, that this would be a "piece of cake" for Mies and I. I can honestly say, that this time is different, literally and emotionally.
It is hard not to take these diagnoses (for both boys) personally. What did I do wrong? Did I miss something allow the way? Should I have noticed things or spoken up more when I did? I did put forth so much energy when Andrew was diagnosed as having HFA that I think I burnt myself out. So, when I started noticing things were "off" with Aidan, I just ignored it, thinking that he was imitating Andrew's behaviors and that when he went to school, then he'd be fine, "normal". The dyslexia part was noticeable in kindergarten and am glad that it was finally diagnosed for Aidan, but the other quirky and sensory processing stuff, I thought was imitation. Honestly. I know it sounds stupid now, but given the circumstances, like where we live there aren't many young children in our neighborhood and with Andrew being HFA, we never joined things or went to many places where there would be a lot of children. Because if we did then Andrew would either "retreat" within himself or when he was younger have a tantrum, so going places was hard. And then it's explaining why my son is like this -- like it is my fault, or is contagious or something. I'm sorry, I didn't want to be the freak show!! I know that sounds harsh, but think about it...people pointing, whispering, or acting like I have the plague, because my autistic child is having sensory processing issues. It's exhausting, having to explain...so we went to fewer and fewer places/events. And when we did go places, and Andrew did "retreat", he was not only being watched by other families, but by Aidan. Aidan was also watching at home; he and Andrew are ALWAYS together. That is why I honestly felt that these "quirks" in Aidan were learned. [Another side note: With Andrew, I stopped explaining, because I started accepting Andrew as Andrew, which was VERY empowering for both me and for him.]
I just hope they get it right in Marshfield and that Aidan gets help with his sensory processing, just like he has for his dyslexia.
...TO BE CONTINUED...
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