One of my last posts I wrote about looking back and it is something that Felt and I do a lot these days. Tonight I am looking forward. I know that with everything we are trying Andrew will get better. There will be a day when he doesn't just cry out of pain. There will be a day when he can say 'mama'. And there will be a day when we can play a simple game with him. I really look forward to these days and I am so thankful for the sweet moments of laughter that we get with him that come every once in a while.
We had the Mounce family visit us for 5 days and it was really nice to have all the extra hands to help with our drew-drew. It was also hard to see all of their faces as they realize how much regression has occurred with him. It was nice that his aunt Stacey is on a somewhat similar diet and was really helpful by cooking up some gluten and cassen free stuff. Andrew did really well on Xmas morning and sat in my lap and allowed hand over hand assistance as we pulled lots of sensory toys out of his stocking. He was really spoiled this Christmas and I guess the big gift was a small trampoline that has a hold-on bar for him to jump on. Although he can't jump it is something we are working on, and he smiles so big as we sing 'no more monkeys jumping on the bed.' His aunt Stacey and I took him to a new neurologist to get results of the past EEG and to get a second opinion. This neurologist didn't give us a lot of info but did say that he had abnormalities on the 23 hour video eeg. Abnormalities doesn't really mean seizures so I am skeptical about the prescription that he wrote out for anti-seizure meds. I need to do more research. We were also told that there is a 50/50 chance of him making progress on these meds. I'll take a 50 percent chance but I need to hear from the Thoughtfulhouse first.
Before the holidays Felt and I met with the speech therapist from Easter Seals. She actually stayed at our house for 4 hours. He is only 2 and we haven't even gotten to the schools yet. I can't imagine how long our ARDs are going to be but I feel bad for whatever school and teacher gets us. It seemed like forever but after making a phone call outside she came back and accepted all 30 goals that we had written for Andrew that were broken down into different developmental levels such as gross motor and visual discrimination. I formulated these goals based on two different developmental assessments that I have- the Brigance and the ABBLs. I was very proud of Felt for arguing with our once nice therapist and for really being involved and advocating for Andrew. Felt and I believe that she was told on the phone to wear us down so that we couldn't get to intensity and frequency- hours because it was 7:15 when she left and that was 45 minutes past Andrew's dinner so naturally he was upset that his routine was off. We did agree to increase his time from 90 minutes a week to 3 hours of therapy a week which includes 2-45 minute speech sessions and 2-45 teacher sessions. She told us that we would never get therapy everyday even if that's what we wanted. Some funny moments of that meeting was that when she first sat down she started to tell us about this parent education program called Hanen- more than words, and how great the book was. I looked right at her and told her that I was certified in the program. Ha! Ha! She was suprised and I thought it was funny how I really am their worst nightmare, in a way. Before she left I told her that we would be meeting again because although she had accepted his 30 goals there would be no way he could attain all of those in 3 hours a week of therapy. I think she was really the worn down. Felt and her argued pretty bad at one point and it was amazing to see that after she accepted Andrew's new goals how Felt was extra friendly to her. He was even showing her our Autism ornament. What?!?
One of the best gifts that I got this year was the Jenny McCarthy book Louder than Words. It is so good and in one day I am almost finished. She is definitely a hero for us moms out there and I am so thankful for her celebrity status and position to help cure our kids. She talks a lot about the diet, supplements and her sons story. I feel like we are on the right track but I know we have some important steps to get where Andrew needs to be. I will be working for a home health company slowly taking on kids after school and hope that by March 1st I will be able to quit the schools and take him out of daycare. I pray that this plan will work.
One neat thing- I had been reading that when autistic kids get fevers that their language improves. Last night Andrew was in pain- crying and did have a fever. He babbled more last night and today than he has in 6 months. I pray that even if his fever is gone and the pain is gone that he will still babble and that this babbling will progress to words again. I know this may not happen but I pray that it will so that I can give God the glory. I will keep the faith and I know that our God can do all things when we ask.
1 year ago