| Nico's Story Update 2 |
| Update...June 18,2007 The last time I updated Nico's site he was about to turn 19 months old. He had come along way since he was diagnosed with Infantile Spasms at that point. He has remained seizure free since his diagnosis at 6 months of age. We were extremely pleased with his progress at that point. I mentioned at that time that I had been reluctent to update this site as I was worried if I were to, that there might be a chance that he would begin having the seizures again, and my optimism would be crushed. Nicolas went on for about a year and a half and was making slow but steady progress in his development. He remained non verbal, and was working hard on his fine and gross motor skills. When he was a little over 3 1/2 I noticed that his progress was somewhat stalled. He still was non verbal, his eye contact wasn't that good with those unknown to him. He also wasn't responding to his name when you spoke to him. I started wondering if he were autistic at this time. He had no way to communicate and was starting to show signs of anger and frustration. We had him evaluated for the PECS system and he showed alot of promise using it. Unfortunately, we live in a rural area and no one at his preschool knew how to use this system effectively. At that time, we decided to move him to another school. One that specialized in autism and developmentally delayed children. They used the PECS system for many of the children there. Nicolas has been at the Margaret Murphy Childrens Center for over a year and a half and doing wonderfully, but unfortunately because he is now five, he will have to drop out of the Child Development Services program in our area (removed from MMCC) and be placed in a public school in our district. Our nightmare has just begun. Knowing that he will be entering public school in the fall. We had him evaluated a few months ago. We needed to know for sure where he was at developmentally, and find out if my suspicion was right about the autism. After his neurologist ran tests last December (MRI,24 Hr.EEG) and we found nothing medically wrong that way as far as seizures etc. He was evaluated for autism. On April 23rd,2007 we were given the diagnosis of autism. They also felt he had ADHD. Normally I think I would have been crushed, but I actually felt the opposite. It was a little bit of a relief to me....I now know it wasn't my imagination. I can't even begin to tell you how much it hurt when people would express their opinions "Don't worry so much...he will catch up in time" "Oh, he knows he shouldn't be doing that!" "You coddle him" I KNEW otherwise....I didn't coddle my son...i was trying to protect him from situations that I was sure he found difficult to experience..such as loud gatherings, chaotic places etc. It has always been obvious to me...that he has very sensative hearing. Loud music and noises such as fire truck sirens...would send him into a panic. I also knew that when he pounded his fist against the television, he was screaming for attention. He is nonverbal..how else could he get someone to come to him right then and there? Now that he has been diagnosed...everyone realizes why he does what he does, and we are all working very hard to educate ourselves and find ways to help him communicate his needs. Life actually seems alot easier...well at home anyways. Now we are beginning the school transition.... It is becoming painfully obvious that at least in our school district... We will have to advocate very hard on his behalf. His first PET/IEP was a month ago. I was very nieve in believing that it would be as it said...IEP (Individualized Education Plan) Not at all what I had expected. It was very apparent that the school had already determined before any of us got there (we along with the professionals at his present school, casemanager etc) where he would be going, and what services they would or would not be giving him. It is mind boggling to know that even though they are aware he is autistic, nonverbal, not even potty trained! that they feel he will just fit right in to a particular school without any one on one assistance! I have spent endless hours researching, spent most free time attending seminars on autism, and disability rights etc. It's apparent that this school district has a wait and see attitude... lets see if he regresses and then we will see what he might need. The worst answer so far...we don't give one on ones or call it that, because if we tell you he has a one on one..and you show up at the school, and he is alone. We haven't forfilled his IEP and will be accountable. ??????????? and why shouldn't they be? Therefore he can't have the one thing he truly needs to succeed...because they are afraid of being held accountable. Even though all of the professionals that evaluated Nicolas have said that he clearly benefits from one on one. . So...here we go.... Time to advocate...advocate...advocate... |
| Nicolas now at 5 1/2 years old |
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| May 30, 2003 |
| Nico's Photo Album-coming soon |
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