the good and bad from the past few months **UPDATE**

[ambernicole531]

  Hi. I think the last time I posted anything my little Bill had started preschool and i was told he was globally developmentally delayed. I was waiting to get him into a psychiatrist for an evaluation for autism. Since that post Bill has been doing very well in the special education preschool program he is in. He tries so hard to do everything!! He is using short and sweet sentences. has told me out of the blue that he loves me (melted my heart) and is doing very well speech wise considering pointing to pictures and telling what they were or repeating was all he would do. I went to a parent teacher conference and according to his therapist they told me they did not feel he was Autistic or atleast did not see him in the spectrum, but thought perhaps he was more than likely mildly mentally impaired and that in their opinion he would greatly benefit from outside therapy. They have put him in a smaller class where he is able to get more one on one. He loves going to school, the bus makes his day!!!  I seeked outside therapy, and was shocked to find it so hard to get started around here.  We are still waiting on speech and physical therapy, but he is seeing an ot every other week. This is all the good!  THE BAD --  I went to the Dr. and expressed my concerns, told the pediatritian what the teachers said and she agreed to change the referal to a neurologist and also switch hospitals due to the long wait at the other childrens hospital in the area. He was scheduled three months out! Big deal because we had been waiting almost 8 months and still didn't have an appointment or hopes of getting one anytime soon. Sadly Bill has began having siezures (or we finally noticed them) so now his appointment is this Monday.   When does the worry stop?   and will finding out anything at all comfort me....or make it worse?

**UPDATE**  Today was the big EEG day. There were no indicators that would suggest he would have a seizure! I guess that is good news! He did finally get seen by a nuerologist today to evaluate his development. He said that due to some of his facial features, his medical history, and his cognitive ability they were going to do blood work to test for Fragile X Syndrome.  We are just waiting on those results. If he is negative than we will just keep testing for other issues. He didn't see the need to test for others however until this result came back. 

[Maikopmom]

So happy to hear that your son is doing well and enjoys school.  It much have been music to your ears the first time Bill said I love you out of the blue.  I'm so happy for you and him. 

As for the worry and concern.  At least for me it doesn't end, but I learn to look past it and focus on other things.  My son, now 13 years old, what once thought to be Autistic,  (I'm not at all saying he was autistic and is now cured - that's not the case)  He just displayed many of the signs of autism.  Anyway, is most certainly not autistic.   He is or at least was developmentally delayed.  He had and still has and always will have language processing issues and his mental memory is low - basically this means he has to spend more time to learn the same concepts.  He needs more repition than the average student.  Anyway, each step along the way - the accomplishments and new problems were a challenge, but together we (my husband, my son, our daughter, and I) got throught them and continue to get through them. 

I wish you all the best with Bill.  Enjoy and focus on his accomplishments and all his effort and hard work.  Create wonderful memories with him and take lots of pictures and video - I have lots of pictures, but not very much video and both of my children wish we had more. My thoughts are with you. 

[sayres]

I am sorry to hear that Bill has developed siezures I hope they are easily controlled. I am happy to hear that his teacher sees what you see and that his doctor is being more proactive.