That's really how I feel lately. All these appointments and phone calls, expenses, messages, tests,bills.......I feel like I am going to go crazy! We were called several weeks ago about the EEG results. There was a faulty electrode resulting in the need for a do over. My dad and I went on Friday for the test but after sitting for 15 minutes were told that the computers were down, so here we are again with no results and I am waiting to take him at 6:45 tonight. He had an ABA evaluation Friday and will receive 3 hours a week of this therapy starting next week. I took him to Warm Springs rehab today for OT (occupational therapy) and Speech evaluations. It was a long visit but they were thorough and I felt like they knew what they were doing. It was hard to hear from the OT therapist that he is one of the worst cases that she has ever worked with, considering she looks late 40's. I knew he was low but it's hard to hear from other people. She was very positive though and excited to work with him. Speech was ok but she told me that if he wasn't able to focus or attend (which he can't for even 3 minutes) she wouldn't be able to help him with language acquisition. I know this too being a therapist, but again hard to hear. I just can't let everyone give up on him. He's not 2 years old yet, and we can't give up the fight this early. I tell myself this but it's honestly hard to keep fighting when I see no improvements and just more regression. I sat in the lobby waiting for the evaluations and the receptionist pointed out some toys he might play with. I couldn't tell her- he doesn't play with toys. No one seems to understand and instead people just seem to stare. The constant humming, flapping arms, walking on toes, falling face first to the ground, disinterest in toys or people, blinking eyes.....it's hard no to be anything but depressed. How did we get this far regressed? Why Andrew? It makes me cry just thinking about it. So, I'll stop. On another note- we had our aptmt with the Thoughtful House nutritionist. It was awesome- she was great and recommended lots of tests, and diet information and an aptmt with ..... Dr. JEPSON. YEA!!! We thought we would have to beg to get in to him but we see him Nov. 16th. I just pray that we can seem some skills recovered, I pray for our Andrew that he will be able to have a meaningful life. Please pray for us as we get more and more stressed, frustrated with eachother, the situation. Please pray for Andrew that God will give him skills, keep him safe. The OT did recommend him wearing a helmet, as hard as this was to hear- I know he needs it. I wouldn't be suprised if he already has a TBI (traumatic brain injury). Please pray for answers for us.
We are a family of five living in San Antonio, TX. Our son Andrew was diagnosed at 20 months with Autism. We knew that something was still not right about his diagnosis. After many doctors appointments with specialists and geneticists he received a diagnosis of Rett Sydnrome in November 2008. He continues to struggle daily with communication, swallowing, using his hands and with breathing. We really feel blessed with every day we are given and we are learning to love and live with life's many challenges.