Today was a great show for me. I don't get to communicate with other parents of children with Autism that often and it was nice to hear what the two ladies had to say. I feel like I am going through the pain and dealing with a lot of similar issues. I can relate to the pictures that Jenny had of her son- the happy smiling faces and then the blank empty pictures of her son- just like Andrew. I remember when he go his vaccinations and especially the MMR. I talked to the nurse and told her how nervous I was- she dismissed my fears. I prayed to God and crossed my fingers telling Him- I can't handle any more so please do not give me Autism. I remember him being sick at the time and I can remember him losing all of his words, and sounds. I remember when Felt would sit with him and sing "If you're happy and you know it clap your'e hands." Now we can barely get him to sit and listen to us sing the song, he hasn't clapped his hands since he was 14 months old. I do a lot of remembering when's lately. I know it's not healthy but it's hard not too. I was thinking tonight that I remember when he would wave bye, bye and say bye, bye to the water as it went down the drain after bath time. He would never do that now- I have to physically hold him down to dry him off as he screams each night after bath. This summer was a hard time as well- I remembered the summer before when he would play with bubbles and say 'bah, bah" wanting more bubbles. Now I can't get him to communicate that he even wants more. He is now a nonverbal child and communicates through his one sign- please, patting his chest. It's hard but he is now losing this one sign. I listened to Jenny talk about the light at the end of the tunnel and seeing that light. For me, the only light I see is Heaven- where I know Andrew will be able to call my name, be free from pain, tell me that he loves me and play ball with his daddy. That is the only thing that I can look forward to. Not a bad thing, but I am praying for days on earth that I can look forward to.
Funny thing today- his pediatrician called me and we talked for a bit. I think she likes us because she hasn't had too many kids on the spectrum. She called to tell me that the FLU vaccination is in- ha, ha. She stressed how important it is that he get it. I know she thought that I was crazy but I told her we were not interested and that he wouldn't be receiving any vaccinations until I felt that they were safe for him- how about never? Doctors won't let up about these , but if it were their own children they sure would feel differently.
Rett Syndrome. One year Post Surgery
3 months ago