Subject: thankyou! from the bottom of my heart thankyou
Date: 11/16/2013 10:14:20 PM
I have been thinking long and hard about what to write in this letter. It is very hard for me to get my emotions out onto paper or even to voice them. As I am writing this, tears are pouring down my face. They are tears from an emotional year and an amazing six months. I am one of the few lucky parents that have gotten to experience the miracle of the autism medicaid waiver. I sincerely feel as if I won the million dollar lottery, especially since I would trade a million dollars if I had them to get the results I have seen with the ABA intervention program. First off I want to tell you thank you from the bottom of my heart. You have saved my life, my marriage, and have been giving me back my son a little at a time.
Let me explain. My son Damien is now 4 years old and this journey of heartache, joy, and pain started exactly three years ago. Damien started out as a normal child and hit all milestones early and was walking and talking and tragedy struck shortly after his one year well child visit. I still remember the day I walked into his play area and caught him staring at the wall banging his head and screaming. He introverted and stopped talking and walking. He began walking again at 18 months and I had no idea if I would ever hear my sweet little boy say the word momma again. I began trying to do therapy with him at home and spent four hours a day trying to work with him and get his attention. I had very little luck with him with a newborn baby and his 3 year old brother vying for my attention. I was devastated. I spent the next 2 years trying desperately to find help only to have my insurance notify me that he did not get coverage if I got an official diagnosis. I learned there was no help available in my area for autism and I was out of luck. Our family was devastated. He didn’t sleep more than 4 hours at a time, he was constantly crying and sad. I didn’t have the resources to help my son and a light came into my life.
In March of 2013, we started working with the alternative behavior strategies group on the Medicaid waiver. They made goals and told me within six months he would be signing at least 6 things and would be starting to develop some language. I was highly skeptical but had read the only proven treatment for autism was applied behavior analysis treatment. I might not have seen many amazing things, but I have witnessed a miracle. I still will always remember the day in July my son once again said momma. He says it all the time now and it warms my very soul every time he utters those sweet 5 letters. You have given me back my smiling, loving son. Every day he improves more. He went from two and a half years of working with me daily and producing no results and having even more regression to saying at least 15 different words at promptings. He has started teasing us more and smiling his sweet smile all of the time. His eye contact has improved tremendously. He couldn’t even do a simple puzzle in March and now he can figure out more difficult puzzles. He can match colors and items. He can put his shoes on. We had help with a behavior improvement plan and we spent a month sleeping outside his door putting him to bed at every time he tried to get up at night. He now will stay in his room through most 8 hour night periods. You have allowed us a glimpse of hope and relief. ABA therapy is a miracle. I can’t express in words how it has changed my life.
Insurance does not cover ABA therapy in Utah, in fact, our insurance at the time of the lapse told us they would drop him if he was diagnosed. They said even basic well child visits could be attributed to being needed because of autism and not be covered. We had to pay a bill over a thousand dollars out of pocket because the audiologist that tested his hearing wrote down on the form she suspected autism was the culprit for his speech regression. It was an awful position to be in. Please have mercy on the families of these children. This is a proven therapy that has changed these childrens' lives forever. If we invest now while their brain is still developing you can give them optimum improvement. They can still recover and learn to their fullest extent, which in turn will make them more productive members of society instead of members who will be solely dependent on the mercy of the public system once their parents pass. Please! I beg of you to continue the waiver program. I am frightened for the future without ABA therapy for these precious souls. We can improve their lives and help give them a voice where they had none before. Please let these ABA experts work their magic on our children. We desperately need this proven coverage. I can’t sit back and watch as thousands of Utah children go without help daily because we do not require coverage. The one benefit to our family of Obamacare was that there would be no more exclusions….a lie…. Autistic children are still not required to be covered. It is a travesty in the highest that we have the key to improving their future in our hands and we are watching their chances pass us by. Give them hope. Give the school system help by preparing these children early through ABA therapy. Let them become productive tax paying members of society. Give their families hope. Please! Please! Please continue this program!
This is the face of autism! Please don’t just look the other way! These children need your help desperately!
This is an ATEC score I did a survey on and got results in February. The higher the score the worse the child is. These are numbers above the normal graph so the lower the atec the better the function of the child( autism treatment evaluation checklist:)
***TOTAL AND SUBSCALE SCORES***
Total Score: 149
I. Speech/Language/Communication: 26
II. Sociability: 31
III. Sensory/Cognitive Awareness: 32
IV. Health/Physical/Behavior: 60
This is his score on the checklist 6 months after treatment started: He improved 56 points overall 56! It is miraculous the numbers don't lie.
***TOTAL AND SUBSCALE SCORES***
Total Score: 93
I. Speech/Language/Communication: 23
II. Sociability: 15
III. Sensory/Cognitive Awareness: 26
IV. Health/Physical/Behavior: 29