I don't know if this is healthy or not but I often find myself looking back at all of the things that Andrew used to do. It reminds me that he isn't the same little boy that he was a year ago and it helps drive the force to fight for him in getting treatments, therapy and looking for an answer. He did have words- Dada was his favorite and he would shout it and he would call me dada as well. He has always loved bananas and would say 'nana' to request one. I remember several times that he said 'addie' for our dog Maddie. He also said 'bye' bye' and would wave bye bye to the bath water at night. He said 'bu,bu' for balls and for bubbles. He would sit on Felt's lap and clap his hands to the song If you're happy and you know it clap your hands. He loved to look at books and I can remember several times finding him in his room sitting on the floor and looking at books. He also loved balls and he would throw them around the house, run and chase them. When I would pick him up from daycare he would get so excited to see me that he would cry and cry until I held him in my arms. We would sit on the bed on Saturday mornings and take a nap together and laugh, and make sounds.
For Andrew things started to slowly slip away starting at a year. The words went away first and I remember telling Felt last Christmas that I was really worried and I did not want to go anywhere for the holidays. I could see the red flags go up. After getting PE tubes in his ears he still did not get speech back and that really concerned me. Then he started walking at 15 mos, and a month later he was into walking around the house staring at the smoke alarm lights. We thought it was cute but kinda strange. He would also walk to our back door and stare at he crack between the door and the wall- now this definitely sent off red flags and again Felt would respond to my fears by saying 'I don't know' and 'he's just behind.' I knew things weren't right but I wanted to believe what everyone else was saying. At 18 mos my dad called and said he needed to be evaluated for Autism- this was during the time we were trying to sell the house, look for jobs in San Antonio and think about getting a new house. I was so stressed and upset that my Dad thought that he had this. I kept trying to explain to my Dad what a developmental delay was, but in my head knowing that it was really possible.
I wish I had known that this would have been the road we would head down. I wish that during the time Andrew was so sick and on constant breathing treatments that I would have quit work, stayed home with him and enjoyed the time that we could engage and enjoy eachother. I still enjoy Andrew but it is very hard for him to enjoy being with us. He can't wave, speak, imitate any gestures, clap, use a fork or spoon. He is constantly displaying stimming behaviors and he appears empty and disengaged the majority of the time. If we let him he would walk around on his tip toes aimlessly around the house, pulling on his fingers and humming. Felt and I call it the autistic hum because you can hear the autistic kids get out of their cars at therapy. It's the same hum. He is unable to turn the pages in the book and has no fine motor skills to play with any of the old toys that he once enjoyed. He is at the point where can't even sit in a chair without sliding out. He has such low tone now. His swallowing has gotten worse and now he only uses the front teeth to chew and then chokes himself because he can't get the food down. Scary! It's hard to think about all of this but I find myself telling more and more people his story and maybe it's therapeutic.
He now has a weighted blanket and it has worked well for him. It's sad but he can't even get up if it is on him- that's how little strength he has. And the blanket is not that heavy. He is really into music lately and stands over the computer crying until he hears the song Breathe by Anna Nalick. Crazy kid!! He even cries when the song is coming to an end. He also loves the Beattles and he likes Jazz music. Now if I could get him to like Country.
Rett Syndrome. One year Post Surgery
3 months ago