I sit here tonight feeling really overwhelmed. Feelings, of sadness, guilt, frustration and depression surround me and I know it has to get better. Andrew is running around in circles banging on the desk, staring at the monitor, banging some more on the blinds and giving screeches to ask for itunes. It's the same thing everyday and nothing seems to change. I believe kids with Autism have better chances of recovery than ever before but the puzzle to Andrew's autism seems to be a really difficult one. I worry over everything. I worry that we aren't doing his diet the right way. I worry that he has food allergies that we aren't aware of besides issues with gluten and cassin. I worry that we should already have him on digestive enzymes- but worry that maybe he isn't suppossed to take those with the probiotics he is already taking. I worry that his gut isn't healing like it needs to be and that we will start chelation to early to work for him. I worry that if we don't get a hard chamber hyper baric oxygen chamber that it will be money wasted and we won't see changes. I worry that more applicants for the nanny position will be no shows like the three that were scheduled for interviews today. I worry that Andrew will never talk, and I worry that his life will never be productive like ours. These are just the thoughts that wake me up at 2am and are controlling my day. I need really need to let go of things and let God do his work.
This is the question that was posed to Felt and I at our last appointment in Austin last week. Chelation is a very contraversial treatment conducted to remove metals out of ones body while Hyper Baric Oxygen Treatments are also very contraversial. It is where you are put into a chamber and 100% oxygen is breathed in allowing to heal the muscles, brain, etc. Both are very costly so we are trying to prioritze what is best at this time for Andrew. We got results back from the lab in France stating that Andrew has high levels of porpherine- mercury. Don't know where this would come from-maybe vaccinations....hmmmmmm. Makes you wonder! I know a lot of people say that there isn't mercury or thimerosol in vaccinations anymore but until you have read Evidence of Harm and done some research- well, then you will understand that that isn't the truth. It's sad but one day we will have answers and I think those conclusions will be what parents have said all along. We are leaning more toward HBOT because it is possible due to Andrew's extreme muscle weakness that he has had a stroke. Maybe in utero or after. This would explain his left sided weakness and ptosis of his left eye. Dr. Jepson said that studies have revealed progress with neurologically impaired children doing these dives. It would require 40 dives- Monday-Friday with one hour a day. We plan on doing these treatments after we go through a couple of weeks of his B12 shots and Glutathione cream( another new supplement). I haven't given a shot to him yet and have made Felt do it. I'm too scared and worried about getting the muscle of his tooshi instead of the fat. Sadly this is Andrew's last week of ABA at the Treehouse and his last week at daycare. After last weeks appointment Felt and I realized that we cannot afford $1000 a month out of pocket for 3 hours a week of ABA. I probably have gotten more than Andrew out of this by talking with the other moms. It has been so empowering and therapeutic for me. I will always treasure the way those women opened up to me and encouraged me and the positive thinking they brought in dealing with this diagnosis. It has meant so much to me to have them to talk to about doctors, what others say, progress, biomedical interventions, and family issues. When I picked up Andrew on Thursday afternoon frantic and rushing to get to his Vital stim therapy I noticed a note on his cubby. It said "Andrew will be moved up to the next class 1/21/2008. " I looked at his teacher and she said she had just noticed the note. I was almost in tears as I raced out of there almost late for therapy. I had talked the director back in November and was assured that he would stay in this class. After asking her to write a statement that her staff would not be able to provide one on one instruction - to present in our defense against Easter Seals and being turned down, I should have known that they wanted him gone. I was upset by this but felt and still feel very strongly that I do not want him to be in a facility or place where he is not wanted. I gave them a weeks notice and pray tonight that God will send us an angel to take care of him here at home. It will be costly but I think he will benefit more in the long run and it could also relieve Dandy(my dad) of his biweekly therapy drives. Andrew is doing well and remains a fighter through all of this. I have taken bannanas away from him over the past month, fearing that they were cause of digestion and hyperactivity. They were one of his favorite foods. This past Sunday he was running around the house - his aimless walk and I said "Andrew do you want a bannana?" My first thought was that he wouldn't understand what I was saying. The next thing I knew he walked to me in the kitchen signing please and laughing. He knew what I was saying and he had not forgotten about those bannanas. I couldn't help but to give him half of one. Felt and I have had our ups and downs lately. Sometimes we feel so overwhelmed by life that we just sit and stare at the tv on the weekends or at night. We have neglected some friends and family by not returing calls and we hope everyone will understand. Felt said the other night "I am so sick of everything revolving around Autism." We aren't sick of our Drew but definitely sick of him being sick.
It was a mid December evening,in a room of heavy breathing, When I looked into my little baby's eyes, And like the ships that sail the ocean,he had captured my emotions, and wrapped them up just like a giftat Christmas time, I thanked the Lord above that he was mine, I prayed to God that everything was fine,.
And after months we saw him changing, Nathaniel's speech was rearranging, So we took him back to see what they could find, And after ironing out the creases, They came up with missing pieces, And they told us that autism's on the rise, I looked into my little baby's eyes,I promised him to find the reasons why,
Now I lay him down to sleepI pray the Lord my son could speak, And make him strong, where he is weak, This I ask of You..And just like him, there's many more, That need our help to win this war, Cause who knows what might lay in store, To help them make it through.
The doctor says, there's so much more to do, to put the pieces back together, but it's up to me and you
So now we lay them down to sleep And pray the Lord they all could speak, Please make them strong, where they are weak, This we ask of You.. Cause now we know there's so many more, That need our help to win this war, And who knows what might lay in store, To help them make it through. Yes, who knows what might lay in store, The missing piece is me and you...
I found this on one of my emails and it really brought tears to my eyes. Every night I put Andrew down and pray with him that God will make him stronger and will help him to talk. Looking at him lying in bed his little body is so sweet and innocent. Yet I feel so angry looking at him because our family was robbed and it feels like someone took our precious Drew and left only bits and pieces of him. We know God has a plan in this and we continue to pray that God will heal our boy. Somewhere I read that this battle is not a sprint, instead a marathon. We will continue to fight hard!
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.