Friday, February 4, 2011

Starting fresh......Life with Jacob part 2

     After a visit and long talk with our Pediatrician at Jacob's 3 year old well child check we finally started putting the last three years worth of pieces of the puzzle together. Now that much of the attention was off of his now mostly corrected feet, we were all able to look past them and really see in a big picture all the little things we had just pushed aside over the last three years.
     The first few months of his life Jacob had these crazy muscle spasms in one leg, it was like every so often the leg would go totally crazy and jerk and shake, at the time I chalked this up to an immature nervous system. I tried to breast feed but we just couldn't get it to work, he couldn't latch and choked and  I  finally gave up completely at 3 months, I was supplementing right from the beginning  anyway just to make sure he was getting what he needed. Even with a bottle he choked and his sucking was never smooth, it was choppy and "chokey", I tried different bottles, different nipples but nothing helped, it wasn't until he was 8 or 9 months the he managed to take a bottle well. One of Jacob's eyes teared constantly (my daughter had this in both eyes as a toddler so I didn't really think anything of it). When Jacob finally began to smile at a couple months old, only one side came up, the other side just stayed there (the same side that the eye teared). Jacob cannot pucker and is just now learning how to O his mouth but can smile almost normally. He favored one side of his body over the other, even his Early Intervention PT noticed this and commented on it several times. When he bothered to chew food he chewed most things on one side, he was also a "stuffer", he stuffed as much as he could into his mouth and eventually it went down, a huge choking problem that scared me terribly. When he stuck his tongue out it never came out straight, but instead to one side.If you watch him talk now you can see that his mouth slants one way. As for his "red flags" for being on the spectrum, he loved being swaddled way beyond what normal babies are swaddled, I'm talking to nearly two and the we would tuck him into a sleep sack and he would squish himself into the corner of his crib. Jacob avoided eye contact, rarely laughed, didn't answer or look when you called him, preferred playing with things to people, he didn't use words, he at one point actually lost some wordish sounds that he did make. There were other things too but it is just alot to write here so I give you the general gist of things.  In her early notes, his EI special teacher even states that she can't believe that we saw these "red flags" so young and she believes that he is on the spectrum, by the time we "graduated" from her she writes that "she cannot believe how Jacob has turned on a dime, from a child she believed to be on the spectrum to a child that is functioning almost normally".  In looking back we also realized that all the visits we made to the neurologist because of his plagiochepaly, touched on things that we should have picked up on also, mostly dealing with his preference for using only one side of his body. The doctor left the practice and we graduated from the helmet so we just didn't go back (another mistake).
     So now that we start putting these things together the pediatrician thinks that we should look into the possibility that perhaps he had a stroke during birth or that maybe he has mild cerebral palsy or perhaps both. This is an issues we are still in the process of seeking out answers for but in the meantime we did the PT eval and also went through our school district and had OT, speech, and psych. evals. done as well.
     The PT was the first one who felt SPD (Sensory Processing Disorder) was one of Jacobs issues. She said things that at the time we just smiled and nodded (and took mental notes) through, but later ran home and began researching. Things like sensory seeking, proprioception, low tone, heavy work, a whole list of things that answered so many questions. Up to this point the term I was using was "strong willed", but I will save that post for another time. His OT, PT, and speech evaluations came back showing that Jacob had significant delays in almost all areas, including ; fine motor, self help, gross motor, eating, oral motor, swallowing, and sensory processing. Most of his test scores (at 39 months) placed him between 17 and 23 months. He has trouble with focus and now see all the ways he is a sensory seeker (again best left for a future post). The phych. eval came back with some pretty significant delays in daily living skills, coping skills, and fine and gross motor skills. The bright spot in this for us was that his cognitive skills come back at the 6yr 9month age range, again this answers quite a few questions and leads to some pretty interesting monents.
    We took Jacob to another neurologist in late November and among other things he feels Jacob has Dyspraxia which we can understand. He asked to do some other tests but we have decided to hold off and instead take Jacob to a developmental pediatrician first, we just didn't feel "right" about all the tests the neuro wanted to do, and before we do them we want a second opinion. Appointment yet to come.
  Jacob started therapy in mid-November, he goes for PT and OT twice a week and speech/feeding once a week, I do alot at home to reinforce the therapies he receives.  It's only been a few months so we haven't seen huge leaps but I did for the first time get a kiss with a somewhat rounded pucker and after waiting 3 1/2 years, it was the best kiss I've ever gotten! 
     I don't use the terms special needs or 2E very much, I have a hard time, because of all I've read, despite Jacob's many needs, we don't really deal with nearly as much as other parents do. We have a long road ahead, and some days that road seems almost endless, when he is finally down for the night I sit and wonder if it will ever get any easier, I don't have those answers but for the time being I'm patient to wait.

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