Wednesday, May 23, 2012

Michael's Diagnosis (long post)

Yesterday, we went to get the results of Michael's testing.  He was tested by a pediatric nuerologist at the Lurie Center.  My husband and I have always had an inkling that there was some issue, but we were never quite sure if there really was an issue or if we  were just over reacting (or at leas that was how I felt).  We had an abnormal AFP test when I was pregnant with Michael, but the ultrasound looked fine so we never went further.  I came down with pre-eclampsia when I was 32 weeks pregnant and ended up in the hospital for a week and on bed rest for the rest of my pregnancy until I was induced at 38 weeks.  I went into labor and Michael got stuck and I ended up with a c-section and on magnesium sulfate.  When I tried to breast feed, he always had a hard time latching.  While I was still in the hospital, the lactation consultant noted that he had a little difficult time sucking and we had to stimulate the roof of his mouth to get him to suck.  While I attempted to exclusively breast feed, Michael wasn't gaining the weight that he needed to and we needed to supplement with formula, as well as attempting to get him to latch on and pumping.  When Michael, 3 months, I became pregnant with my twins and stopped breast feeding all together.

At that point, he was doing fine with bottles and maintaining his growth curve.  He was developing on time with most of his milestones, except for speech.  We finally got an EI evaluation for all 3 kids when Michael was 2 1/2 and the twins were just over 1 1/2.  Michael was in EI for 6 months and then transitioned to the public school system with and IEP.

Michael was in a 1/2 day program for 2 1/2 hours, and after 2 months or so, we had another meeting and it was recommended that he go into a full day  preschool program.  He has been in the full program for about a year now.  He has a wonderful teacher and wonderful para-professionals that care so much about him as well as his speech therapists.  He has done so well with this program, but I still had concerns.

My husband and I decided to move forward with an evaluation, hoping to get our questions about developmental delays vs normal development just a little behind schedule.  Michael was evaluated a week ago and there was some question about whether or not he fit the criteria for an autism spectrum diagnosis. Yesterday we returned to go over the results and the doctor decided that he really did fit the criteria, more specifically PDD NOS.  I guess he would be considered more of a child with Asperger's , but he had an early onset speech delay.  He is high functioning, but has impairment in his social skills.  There is more to it than that, but at this point, his sensory needs and his social functioning seem to be the biggest areas of concern.  The doctor mentioned that he most likely would have been a child that may have fallen through the cracks if he hadn't been diagnosed early.  He is a wonderfully charming child with a great personality. Most likely, as he got older, he would have been considered a "quirky" kid.

As much as I hate having him have a diagnosis, I am happy that we know that there is an issue and that we are able to do something about it.  With a diagnosis, there is a lot more open to us for resources.  The doctor is hopeful that with supports and diet, he may grow out of it and lose the diagnosis as he gets older.    At this point, I plan to be much more vigilant with his diet, as it seems to help him.  I'm not going to be super Nazi about it at parties, but I am going to be more vigilant at home!

As much as I know people don't really comment, I do know that people do read this blog.  I hope that if you read this, you will keep us all in your thoughts and prayers and maybe post a comment if you can.  For me, comments mean a lot and are really helpful, even just knowing someone has taken the time to read what I wrote and not just hoping that someone is reading.


1 comment:

  1. I'm sorry that you got this diagnosis, but hopefully now you can get Michael exactly what he needs to thrive. He is obviously a great kid and has a great mom. Good luck to you all.