Brian's update

Wow, I've realized that I haven't blogged for quite some time. All these things are happening and I keep finding things to blog about today. It's catch up for me I guess. I should be studying but this is so much more fun. :) I am a bit confused and overwhelmed with different emotions right now. I'm not sure really what to think or how to feel. Brian has been doing Occupational Therapy (OT) and Speech Therapy (ST) since his diagnosis of autism. When we moved here to Maryland, it took us a while to get these services going again and we're thankful that he is back on track with these services. He is also receiving ST in school. A few weeks ago Brian's OT therapist informed me that she thinks Brian can be discharged in about 4-8 weeks. I was excited with the news at first because this meant that Brian was on target and doing great. Then I thought, what does this mean. What's going to happen when he transitions to Kindergarten. What if he still needs support? So Matt and I went on the internet and found fine motor skills that Brian should be able to do but isn't able to do just so we can keep him with the OT longer. I don't think he's ready to be discharged. Yesterday, we went to his OT and ST appointment. His ST therapist told me that Brian is making great progress and she sees discharging him pretty soon. WHAT?! Now she wants to discharge Brian?? I didn't understand. We've only been going to this office for about 2 months. How can they be looking at discharging Brian? I didn't understand. I'm so proud that he has made this progress but I'm reluctant to believe that he doesn't need these services anymore. Immediately after these appointments, the boys and I headed to Brian's school for an appointment that I had with one of Brian's teachers. To get ready for Brian to transition to Kindergarten, he had been re-evaluated and the teacher needed some input from me on things that Brian did or didn't do such as social interaction, competive play, etc. As I'm answering the questions, she tells me that she can't believe the difference in Brian from his first evaluation in NC. She couldn't believe that he was the same kid because what was reported from NC is totally opposite of what they were seeing now. She told me that Brian has made great progress and that he may not qualify for services next year. Again, WHAT?!! So she was hoping that with my input on this evaluation that it would be enough to keep the services available to him. Moments later, his ST teacher from school sits down beside me. She gives me Brian's latest evaluation that they just finished that week. She walks me through it and tells me that Brian's scores are average with his typical peers. He has had significant progress/gains within the past couple of months. Hmm. That's when I changed his diet to GFCF. Why can I not see the changes?! As she continues to tell me about Brian's scores, she points out the pragmatic area. She informed me that when she tests children with autism, they all bomb in this area. She really emphasized that she has not yet seen a child with autism score in this area...until Brian. Brian's score for being diagnosed with autism in the pragmatic area was high. The score is below average for typical kids but Brian wasn't too far away from scoring in that average range. Emotions filled me and I wanted to cry. I could feel my eyes start to swell but I was able to hold back. She then tells me that with Brian's scores, she thinks that maybe Brian is ADD and not autistic. She was questioning whether or not his diagnosis of autism was accurate. I told her that it is accurate, that he displayed all the signs of autism when he was younger. I was also suprised to hear her say ADD. About a month ago at the neurologist appointment, the neurologist drew a picture for me. She had ASD in the middle which is autism spectrum disorder. Then she drew other circles interconnecting with ASD and labeled these other circles ADD, ADHD, mental retardation. She said they all interlink...you could have a child who is autistic but that child can also possess other charecteristics that show ADD/ADHD, etc. She prescribed some tests for Brian to see exactly where the autism could be targeted to within his body system. She tested for Fragile X, urine OA, urine creatine/GAA ratio, karyotype and lead level. She is also trying to get the insurance to approve the genome DX analysis. Apparently this last one is tough to get approved. It's already been denied but she has written another letter to the insurance trying to get it approved. His next appointment is in June so that is when we will receive the results. Brian's next IEP meeting is the 17th. We'll be discussing Brian's transition to Kindergarten and his teachers will also be recommending limiting the services he is receiving. It's so scary to think about and I don't know what emotion I should be feeling. Is this one step closer to Brian possibly losing his diagnosis of autism? Or will his diagnosis be changed from autism to ADD? I'm just grasping the idea of autism and I have read so much on autism. I feel like I will need to start all over again now and learn about ADD. The ADD does make sense to me with Brian. I do see it when it comes to two step statements/questions asking him to complete two tasks within one statement. He does lose focus and isn't able to complete the task because he doesn't get all the information by the time the statement is completed. I can see it. I just don't know if ADD is a sign of Brian losing the characteristics of autism and if it is a sign of recovering. Is it better or is it worse to be diagnosed ADD? I want to say that it's better. Working with Brian for the past 3 years with numerous doctor appointments, therapies, IEP meetings, his diet, school.... I don't know what to think about all that they have told me. It's not that I don't want to believe that he has made these strides, I see how our efforts have aided him. Maybe I'm afraid of the unknown...of him not needing me anymore to help him through autism. I don't want to hold on to the autism, but I don't know anything other than autism when it comes to Brian. However, I do know this. I know that God has a plan and a purpose. He brought Brian to us for a reason and when he wants us to know that reason, we will know. Until then, we just keep our faith and trust in God.