It's difficult to know where to begin this, as we were just given so much information. Those that have been through that first clinic visit I'm sure know the feeling! I'm glad I had a good idea of what was happening as far as the standardized testing and such ahead of time. We've been through all of that before, and it really wasn't much different.
Day one started at 8 am. We met with Dr Delahunty and Dr Benore for a better part of the morning; though not at the same time. We were in a one-way mirror room where they were observing Ayden and us together while we answered numerous questions about my pregnancy with Ayden, family history, and of course about Ayden himself. Ayden pretty much played the entire time, except when he had to be examined (which really was about 10 minutes all together). Dr Delahunty was fast and efficient, she is used to working with FX kids...and Ayden's affinity to being touched was apparently not one of the worst. Let me just say, I would hate to see the worst if he's on the mild end!
We had some good discussions with Dr Benore about behavior modification before we left for the morning. It was nice to hear that we were doing a great job with him already. (He noticed and gave examples from the morning that we'd already done) I've heard often that so many parents need to be taught proper discipline before the doctors or therapists can even being to start teaching them how to actually modify the behavior. He gave us a lot of resources to look into and strongly advised us learning about behavioral psychology. Knowing how it works should help us as we begin to start any type of behavior modification.
The "meat" of the day really though, was in the afternoon when we met again with Dr Delahunty. She went over what they found in the medical exam and what her and Dr Benore's recommendations were for Ayden. A lot of what we received was medical terms for things/quirks Ayden has - so I'm going to go through them one by one.
1) Sleep Latency Disorder - Ayden doesn't produce enough melatonin, which is why he has a difficult time falling asleep at night (though, we thankfully don't have the added problems of him staying asleep - he does that just fine most nights). It was recommended we put him on 1.5mg of melatonin (over the counter) an hour before bedtime. Overall, this gave us some very immediate results. We picked up some melatonin after our appointment and today will be day 3 of Ayden going to bed without any issues whatsoever.
2) Anxiety NOS - We of course knew Ayden suffered from anxiety, especially in social settings. Luckily, it is considered very mild and their recommendation was to start teaching him ways to self-soothe himself when he feels anxious. The recommendation was to consult with a behavioral psychologist to help with teaching self soothing methods; however, we are going to work on this one ourselves for a bit first and then if it's not working we will look into outside help. It will take a decent amount of observing him, but we've helped him with calming/coping skills before and they do work. What we need to do now is make it so that those calming/coping skills are things he can do by himself instead of relying on us for help.
3) Flat Feet - Again, not a surprise to us. Also, not a concern. Unless he starts having terrible balance issues or pain (which would more than likely be when he is older) we can leave this part untreated.
4) Muscle Tone - I want to do a big HOORAY in this area. Ayden has had low muscle tone in his legs and jaw since he was born - but it seems to have corrected itself! His jaw has other issues, but low tone and high palette seem to be non-existent now.
5) Autism - This is a big one, at least for me. Let me preface this by stating that 60% of males with Fragile X fall on the autism spectrum. That's a pretty big chance of course, and quite honestly while it is hard for me - it's not unexpected either. Ayden tested into the "mildly autistic" range of the spectrum, being listed as "Autism Spectrum / Pervasive Development Disorder (PDD). Essentially, he has problems socializing with peers, low to no verbal speech, atypical play habits, and repetitive motions (with Ayden, this is hand-flapping and hand biting)
So..that's the basics of our day one. Our overall recommendations were to first and foremost get him as much speech/language therapy as possible. Anyone around us knows this is our goal as well - speech / communication is definitely priority number one around here. The other things were to push visual communication (where HE is imitating conversation), PECS training (for mom and dad), and ABA Therapy. Another vision and hearing screening were also recommended as well as a private physical therapy evaluation.
Overall, it really was a ton of information - but it was ALL good. Ayden behaved above and beyond what I ever could have expected out of him. Dr Delahunty actually commented that he is the most well behaved FX kid she has ever seen - which she may say to others, but it made us pretty proud of Ayden. Day two consisted of evaluations with a Speech Language Pathologist and Occupational Therapist.....which I will talk about in a later post. I also have a VERY funny story to share but I must save that for later as well and put myself into bed!