Well we had our semi annual conference at Pathfinders this week. What usually goes down in these meetings is this : We meet with all of Ians therapist, teachers, director, even the nurse. They go through all of Ians goals they have set and tell us which ones he has met and which ones still need work. They tell us at what age equivalency he is at in occupational, speech, and at a physical level. I never leave in a good mood from these. Its hard to look at a piece of paper that tells you "Ian is at a 11 month old level" or "Ian is 48 percent behind". I hate it I hate it I hate it. I would be more than glad to never go to one of those things again! It just makes me super sad! I usually get a little choked up and get a big knot in my throat at some point and I quit listening to what everyone is saying and I just focus on not getting emotional and getting myself together. Having a child is hard...having a child who is "different" "special" whatever you want to call it is REALLY HARD! I dont even have a way to label it. I cant quickly explain to a stranger my 2 year old look and acts like a 1 year old and I dont really know why. When strangers say "oh he is so cute. How old is he?" and I say "He is 2" then I get a look of confusion from the stranger and I have to go through this whole explanation of "He is small for his age and developmentally delayed" and basically tell his whole life story.... then they look at me like Im pitiful. UGH! Sometimes I think he is autistic, sometimes I thinks he has a sensory disorder, but most of the time I REALLY DONT KNOW. What I would really love at this point in our journey is to have a name for whats going on with him. If your confused reading this and thinking "I thought Ian had Chiari 1 and tethered cord and thats whats wrong". He does! BUT his doctors dont think that this diagnosis is whats causing ALL the delays....it MIGHT be causing the walking delay but the talking and the other motor skills they cannot explain. Ian had a genetic test done last year. I was so sure he had some sort of genetic disorder. To my surprise it came back normal....well mostly. They ran it 25 times. 24 of those times it was normal one of those times the DNA was switched up a little. They considered it a fluke and dismissed that one time.
Ian had a hearing screen done this week and he failed it....again. So we will be going back to the ENT this month and see whats up with that ( that would explain the speech delay) He had tubes put in last spring and I could really tell he could hear better after that. He doesnt SEEM to be hearing impaired but who knows. When I worked at the hospital and did hearing screens on the newborns they failed all the time and 99.9% of the time it meant nothing. Ok Im exhausted. Thanks for reading :)
