Although I have already joined the "therapy world" as a profession, Andrew and all the other family members are joining as well. I now take Andrew to ABA therapy 2X week and my dad takes him on Tues/ Thursday's to Speech and OT at Warm Springs. Wow is Andrew keeping Dad young! Since we moved here he has lost 35 pounds. I am really thankful that I am able to take him to some of his therapy and I am so grateful for Dad's help. I am able to sit and reflect on things, talk to other parents of kids on the spectrum and see other boys his age and older dealing with the same issues. It is tough to see boys 4 and 5 years old with no words and 1 sign and I pray that God will bless Andrew by giving him more language. Last Friday he had a really good day. His Speech Therapist called to tell me that he was imitating a sign that she had done in therapy. I had taken him to my brother and sister -n-laws house and my brother was able to see some great joint attention- looking at Elmo, back at Uncle Cas and then back at Elmo and signing please. Even Felt noticed better eye contact with Andrew. All seemed to go well until Andrew got a little too excited and fell scraping his nose on the bed rail. He is now getting the shock and awe looks everywhere we go. As I sat waiting for Andrew in therapy today I realized that through the years of my work with children with Autism and my level of interest that somehow God had prepared me for this journey. All the time that I spent making materials for children, attending workshops that were never needed for the schools but that pertained to Autism........God was preparing me mentally and emotionally. He gave me a compassion and understanding for these children and prepared my heart. I remember talking to a girlfriend once when I was pregnant, telling her that it would be the worst thing to have an autistic child. Well it's not! It's not a road I would ever choose to travel, but we will fight the good fight and do everything in our power to help Andrew. It's hard for me to realize that God has a plan in this and that someday it will be revealed. I just wish it was on my time and I wish that someone would be able to tell me if we are doing all the right things.
Everyday we hear more recovery stories from parents of children with Autism. It really provides hope for Andrew. Every now and then we get small glimpses of his true personality. Lately I have been bringing him home after school and putting him in bed and reading to him. Sometimes he listens while sucking on his pacifier and holding his blankey, and other times he looks around humming. I started to read the No David book to him yesterday. He laughed at each page, looking at the pictures, and really waiting for the next page. It is a cute book if you have never read it. Each page "No, David don't play with your food!", Andrew would laugh histerically. It really made me happy to see that I could engage with him. I read it several times and then Felt came home and read it to him. Each time he would look, listen and laugh as we read the line on each page. This is huge for him because I haven't been able to get him to attend to a book since May. Today at daycare he fell and hit his head on the corner of the window seal. On the way home he was still fussy and in pain. At one of the stoplights I turned around to him and said "No David, go to your room!" He busted out laughing, then crying again till I said another No David line from the book. Tonight as I sat in his bed getting him ready to sleep I told him to give Pooh a kiss. After I leaned over and kissed Pooh, he followed and kissed Pooh. It could have been accidental but I like to believe that he understood what I was asking him to do. These little moments are huge for us and really give me hope that Andrew will recover lost skills.
My dad and I took Andrew to the EEG Monday night. By the grace of God it was completed and we should get results soon. We hope and pray that he is not having any seizures. The experience was pretty hard. He had 27 electrodes attached to his head and a net to keep them on. He was suppossed to go to sleep but instead decided to tried to pull of the electrodes. I had to hold him down while he was screaming until he fell asleep. Not fun! It was definitely hard for Dandy (my dad). I called to see when we get results and they will not give them to us until we schedule an aptmt. Can you believe the run around we get? Easter Seals seems to be giving me a hard time too. At first they wanted to offer us a different OT and now they are sayng that they do not duplicate services so they would discontinue services from them. I feel torn with so many different options, weighing them, insurance, co-pays, ......once again making me stressed and crazy. I feel like I am constantly analyzing and wondering if I am making the right decisions for him. It's hard! I wish there was a clear answer. I have thought about contacting an advocate. Maybe someone who could give me more insight on Easter Seals and what they are suppossed to provide by law. I am praying for the best therapists who have a desire to help him. Wow-this situation is so much bigger than us. A couple of things that have changed with Drew-Drew lately are his picky eating habbits. We noticed this about a month after the GFCF diet change. He hates red pasta's, but will eat tomatoes. He also cries now when he falls, most of the time. This was hard in the past because we knew he fell hard enough that he bruised but wouldn't cry at all. Scary! We are looking forward to more changes with him. Please pray for us as we try to make the right decisions and are constantly worried that we have made the wrong ones.
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.