So this past fall we saw a couple of different specialists. One was a pediatric neurologist. After doing what I think was a less than thorough exam of Nate, his conclusion was that there are late talkers and that he'd be fine. The paperwork says speech and language disorder (at least it wasn't delay!). No suggestions for treatment other than to see a developmental pediatrician.
I was pretty apprehensive about seeing the developmental pediatrician, as all the paperwork and information I had received from her office indicated that her specialty was working with ADHD or Autistic children. I definitely knew that Nate was not Autistic but I figured it would be better to rule it out. In the mean time, the OT and SLP at Nate's school continued to see him once or twice a week but I had become more frustrated with their lack of knowledge about CAS. They were sure it was something else. Mental retardation? They never said it but it seemed to be what they were suggesting. It can be so hard to be so sure about something and be told by professionals that you are not right. I truly believed that it was just their lack of knowledge about this disorder more than my being wrong. I had also begun reading the book The Late Talker, What to Do If Your Child Isn't Talking Yet by Dr. Marilyn Agin, which has continued to strengthen my thoughts about what is going on with Nate.
When we saw the Developmental Pediatrician, she appreciated that I had filled out the stack of paperwork. Of course, all this was geared towards kids with ADHD or Autism but I filled it out anyway. In thinking back on the evaluation, I should have insisted that she work with Nate first and ask us questions later because by the time she got into the room and finished questioning my husband and I, Nate was done. He was definitely not going to cooperate. Being that he's not a performer like some kids are, I was praying that he would show the doctor what he could and couldn't do. She asked him to stick out his tongue, which took him a while but he did. She asked him to move it side to side and he couldn't. I had him attempt the word "bubbles" because it was one that he and his preschool's SLP had been working on and he made an attempt, kind of opening and closing his mouth more like a fish. She thought it was good. (Are you kidding me? Good for a 2 1/2 year old??) I should have had him try to say the word banana because he probably would have just smiled like he always does when he knows it's not something he can't do. At the end of this appointment I ended up in tears because her response was, "at least he's learning". I couldn't believe that yet another doctor with years of training and specialization would come up with such a vague answer. Her report said to continue with present plan and return in 6 months for evaluation. Another frustrating dead end.
Meanwhile at Nate's preschool he was continuing to thrive and his amazing teachers really become in tune with him. They understood his mixture of signs, grunts, and expressive faces. The intonation and vocalizations he makes are really amazing for someone who has no words. I am thankful that he makes a lot of sounds and is determined to get his point across when need be.
During the months of December and January I started contacting our local school district (and university-more on that later) to get things rolling for an IEP since he would be turning 3 and the home therapy would be ending. The Late Talker book has so much information and even a chapter on getting the help you need, including a walk-through of the IEP process and all sorts of tips and suggestions. I also read all the information I could find on-line about the IEP process, both at the Federal and State levels and any other tips I could locate. I had become a member of both the Childhood Apraxia of Speech, Apraxia-Kids, and CHERUB Facebook pages and read as many discussion boards as I could. These resources have really helped so that I don't feel so alone in all of this.
In January Nate was tested by the school district's SLP and a Psychologist. They spent a session at our home and another session was at their office. I talked with Nate before his assessments, reminding him that he needed to try his best. As I had mentioned before, he's never been much of the performing type and the more you try and push him to do something, the less he's likely to do it. He's a very independent guy, which is a characteristic that is helping him cope well. He did fine with all the assessments and we set the date for the initial IEP meeting.
Now I've never been on the parent end of an IEP meeting and being that I work in public education I was leery about the process. I know that school districts try to cut corners, so I was armed and as well read as I could possibly be. Several other parents on the Facebook discussion boards were cheering me on, so even support from complete strangers helped. We met as a team and I invited anyone that had worked with Nate to attend. The team consisted of the school district's SLP and psychologist, my husband, my mother (who helps out tremendously), me, his preschool teacher and his preschool's SLP. I wasn't sure about the preschool's SLP being there as I never really felt I had her support on the CAS diagnosis, so in a nice way, I asked if she wouldn't say anything. But during the meeting she acknowledged to the group that I had such strong feelings about the problems with Nate being apraxia and that she had been wrong. The more she had been reading and researching the more she had realized I was right. I was blown away. That really meant a lot to me that she would say that to the group of people that was there.
I was fairly happy with the IEP outcomes. Just as I had though, Nate scored at least average in all areas except for expressive language. (Duh!) So they suggested 2 sessions a week for 30 minutes. I asked about extending that to 3 times a week and they said I could call an IEP review meeting for that. I figure I'll wait and see if I can get any additional support from our health-care or the local university's speech center. I did have to ask for ESY (Extended Year Services) so that he would continue to have some therapy during the times the district was closed for the summer. I let the team know that I wanted to take the IEP home and reread it before I signed any of it. I am glad that I did.
It turned out that although we had all believed that the sessions would be 1-on-1 (which is what apraxics require), the IEP stated "group". I was livid. When I called the SLP about this, she explained that it was the way the form was set up and she had intended on 1-on-1 services. I told her that since his IEP is a legal document and would follow him if we were to move, that it had to say 1-on-1. She made the changes. I keep waiting for the hard part! It seems to all have gone too smoothly. The school district's SLP has attended several classes and seminars on CAS and I know we are very fortunate to have her working with our son.
I know that he needs more frequent intervention. He started therapy with the school district about 3 weeks ago. I haven't seen much of any progress made, but maybe it's too early to tell?
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(Part 3 to come....the local university and more specialist appointments!)
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