Sep 27, 2008

Diagnosis Given

Yesterday was the big day for our family. We finally have clarity with Kristofer.
Not really a surprise, we have suspected it for a while now. But the reality of it is overwhelming. Has it changed anything NO! We just now have a clear understanding as to why Kristofer is the way he is. Having the diagnosis will help in school. It gives us a place to start. Did I want this diagnosis, no - not at all. But it does validate all of my thoughts and feelings about what we have been dealing with. In our case I can honestly say that I DO NOT feel that it was caused by vaccines. The signs were there before he ever had the MMR vaccination. Our pediatrician at the time just was not, hmmmm, how to put this nicely....uhm aware of and did not listen to us. I'll admit that I did not push hard about it till he was 3 and we really started seeing how different Kris was from other children. Up until that point we just kept thinking it was his ears.
It's been a long road to get to this point. His behavior in the beginning was blamed on the never ending ear infections he had. Then one summer right after he had turned three our dear friends, Mike and Marty Short, came to visit us. They had just been given the diagnosis of autism with their oldest child. We asked them to watch Kristofer and tell us what they thought. Honestly, Marty had told me to read "The Out of Sync Child" about Sensory Process Disorder. I did but only so I could understand a little bit of what her son was dealing with. I refused to accept that Kristofer was dealing with those same issues that spring. But by summer and listening to what they had to say, listening to Mike (who is a special ed teacher) we decided to start pushing for help. When I approached our pediatrician I told her everything I knew at the time about SPD. She looked like a deer in headlights! No kidding here. She had never heard of it, but I continued to press for a referral. She sent us to a Behavioral Therapist. We started "play therapy" where the therapist worked on behavior modification. I kept asking her if she thought he was autistic but I never would get a straight answer. She referred Kris for occupational and speech therapies. So we started those. We began to see big changes in him. The behavioral therapy honestly helped us more than him, teaching us how to deal with and redirect his behavior.
When Kris was four and had been in therapy for a year I asked the therapists to be honest with me about whether he was autistic or not. They said they weren't sure but he did show signs and it could just be the SPD he was dealing with. So we enrolled him into pre-K at the therapy center. That fall we accepted the pastorate here in Illinois. Before moving Kristofer came down with a terrible ear infection. So we headed to the doctor, during that visit I was told they had finally (after a year) read the reports they had been sent from the OT, Speech and Behavioral Therapists. She was going to refer him to a pediatric specialist to be evaluated for possible autism. But we would never have been able to do it because we were moving in two weeks. The wait to see this specific doctor was 3-6 months. So we moved to IL, got Kristfoer enrolled into pre-K through the school since he had an IEP already. We began asking questions about having him evaluated. The school was reluctant because they were not seeing issues with him in Kindergarten. He was just a quiet boy, who stayed to himself. We knew different, something was amiss with our little guy.
So at the end of the school year after finding a family doctor that agreed with us, we started the process of finding out what exactly he has been dealing with. We truly believe God placed us in IL not only for ministry but also specifically for Kristofer. SIU has a wonderful research program that is connected to the Autism Program of Illinois. The center offers therapy services as well as a resource room for parents; with books, videos, computer programs that can help you create a variety tools to work with your child. For this I am so grateful to be living here in IL! So now that we have clarity and have given the full report to those that needed it in the school system, we feel like now we have the foundation on which to base his therapies and other helps at school on. We are not devastated by this diagnosis. Relieved but still overwhelmed with all the thoughts we have about Kristofer' future. We know God has a plan for his life. His Word tells us that, "He who began a ood work in you is faithful to complete it." God does not make mistakes, everything about God is perfect and Kristofer is one of His masterpieces that he is still working in and through. So we place our trust in a BIG GOD who has a plan for him and us.

I have to publicly say thank-you to all of my friends, family and "sistas -ya know who ya are!" for all the encouraging words yesterday and the last few weeks. It's nice to know we have a support system out there standing with us and praying for Kristofer and us.

No comments: