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Mom Shares Frustration in Getting Help for Autistic Son

by Pat on Dec 19, 2008 at 9:17 PM Filed in Autism and Stress | Autism Legislation, Autism and Insurance | Stories from Readers

I am the mother of an autistic child who is now 5 years old. Our angels' name is Pierre Leonidas Timothee Jr. I have two other daughters who are "normal," Sophia who is 6 and Stephanie who is 15. I can truly say that I KNOW for a FACT that my son was not BORN with Autism. He started to develop normally like my girls did, crawling, walking at one year old, mimicking sounds and words, everything was perfect with his birth. He was planned, a C-section, 10 pounds at birth, and I had a remarkable pregnancy with all my 3 kids.

Then suddenly, at about 2 1/2 years of age, my son started to get vaccinated HEAVILY (by that I mean 3 to 4 vaccinations per visit) and I started to notice my son covering his ears and humming. He started to walk on his tip-toes--things he had never done before. It was like he was going in reverse after all these shots. He wouldn't mimick sounds or say words anymore...so then, I started doing my research. All I can say is thank God for the internet and Jenny Mcarthy being on Larry King live!

I am a paralegal and with the mind of an attorney, and thank God like I said before and my parents, that gave me a good education, because if you don't fight, and ask, and discover things for your child, the child will be in BIG trouble because the State and MOST doctors don't care, nor do they want to admit that it is the mercury in these vaccine boosters that are poisoning our children....!!!!!

When I started to do my research and tried to get help, my son Pierre Jr. was 3 years old, fighting with his pediatrician in Kissimmee, Fla. I kept telling the doctor there was something wrong with my son. At one point, I even yelled and said "D*****, MY SON HAS AUTISM, YOU IDIOT, AND THE SHOTS DID THIS TO HIM".... You know what response I got??? " Don't worry Mom, he will OUTGROW this STAGE"........  I thought I was going to have to hurt somebody....

So, I got a specialist, which I had to pay money out of pocket because my insurance wouldn't cover all of it, so my son went to a "PEDIATRIC NEUROLOGIST" that right away gave me a diagnosis of "AUTISM" for my son. After that, then I was floored by all the legal obstacles this State and this goverment make you go through, even with a diagnosis from a Doctor!!!!!

I figured out that my son needed therapy. He was also given a diagnosis of a speech & language delay, so I figured, that was my first step, but then, come to find out, my insurance didn't want to cover the therapy!!! (shocker right)?
So, needless to say, then I went up against the heavyweights, "THE STATE OF FLORIDA DEPARTMENT OF CHILDREN & FAMILIES" so that I could get MEDICAID for my son for his speech and behavior therapy. By this time, I had to quit my career to help my son, so the only health insurance we had was my husband's and now, only ONE income.

And now, my son is 5 years old and I JUST GOT HELP!!!!!! He just started speech therapy 2 months ago and I have noticed a MAJOR improvement. Why was he denied treatment all this time?????? I tried to get help from all levels immediately, and fortunately, after a lot of red tape and migraines, the State JUST RECENTLY approved Medicaid for my son. Thank goodness since I was UNEMPLOYED and hardly had no money left to eat practically, because if we made too much money, my son wouldn't have gotten the help that he so desperately needed??????????? "WE WOULDN'T QUALIFY" as they put it?????

What is wrong with this system???? EVERYTHING. SO UNFAIR.

They made my son this way, and I have to thank GOD that my family is very devout and religious and I pray HARD, everyday to keep my sanity and my patience and my family from falling apart..... Thank you LORD that he has made me a strong and intelligent woman because the weak DO NOT SURVIVE.

My girls are desperate for their brother to talk, especially my 6 year old doesn't understand why her baby brother can't communicate with her... it is heart wrenching for me as a parent.... really it is.

I have gotten in touch with a really good program here in Florida called the "UCF CARD Program" (University of Central Florida Children with Autistic related Diseases) that have taught me many ways to help my son and learn to communicate with him better. I have a board on my refrigerator that has all his favorite foods. I make him point to what he wants and make him try to say it. This has helped a great deal because at dinner time, he would get frustrated and cry and scream because he couldn't let me know what he wanted.

I am giving him "CHELATION" which is a combination af natural medicines like "CHLORELLA" sea algae, multi-vitamins, B-12, magnesium, DHA and a chemical detox (heavy metal remover) in which I have noticed MAJOR improvements in my son. He was a horrible eater, and now, his menu is very diverse, includes meats which he wouldn't eat and fruits and he also tries a lot of new things.

I AM MY SON'S DOCTOR, LAWYER, ADVOCATE, PROTECTOR, and most of all his "MOTHER"....
I don't trust anyone anymore when it comes to him, because the people who are supposed to be helping him, were the ones who hurt him because of the almighty dollar.......... That is what America & Americans are all about now...unfortunately. Where did the "LOVE AND CARING FOR THY NEIGHBOR" go???????

People don't have a heart anymore...NO PRAYERS IN SCHOOLS?????
It is all about greed and wealth and money and power and it doesn't matter if innocent children are at stake.......
I know.......... I have to live with it everyday of my existence here on this Earth.... but I believe GOD has a plan for all of us, and myself as well.
I am my son's ANGEL and he is MINE............

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12/20/2008 11:37:42 AM

I have 5 kids 2 of which have been diagnosed with Autism. I believe that it's going to end up that 3 of my 5 kids have it. My boys are not old enough for school yet so I've only had to deal with the school pertaining to my daughter so far.

I have 5 kids 2 of which have been diagnosed with Autism. I believe that it's going to end up that 3 of my 5 kids have it. My boys are not old enough for school yet so I've only had to deal with the school pertaining to my daughter so far.
My 7 yr. old daughter was diagnosed in August with High Functioning Autism. We have had nothing but horrible situations with the school. She was in Kindergarten for the second time last year and it was the worst thing I've ever had to deal with in my life. She had a teacher that would constantly punish her - she was excluded from alot of activities and that teacher called CPS on my family stating "Neglectful supervision of Michelle's educational needs". That was after a couple of meetings and 3 different times she would come to tell me all about how Michelle did that day and I would TRY to respond that we suspect High functioning autism and were scheduled with the first doctor we took her to, the teacher as I tried to speak to her turned and walked away from me so the 3rd time she did that I yelled at her telling her she was going to stop doing my daughter the way she was. She let the other kids be mean to my daughter (she even had sand thrown in her face) the teacher would say it was my daughter's fault because of her behavior. Her behavior was touching someones hair & saying I like your hair or picking a piece of fuzz off of someones shirt. So on the day I yelled at her she called CPS. I was working with the principal to get a teacher change and I did not send my daughter back into that teacher class ever again so while we were trying to get her teacher changed - her teacher called CPS a second time for me not sending my daughter to school. So that was several months of dealing with CPS-(everything from CPS was ruled out) I withdrew my daughter and home schooled her. I am not qualified to teach her but I did the best I could and we continued. I finally after 3 doctors took her to a developmental pediatrician & got the diagnosis of High functioning autism. So I was in contact by email with the principal over the summer and she was moved up to first grade solely because of her age and their words "No kid should have to go to Kindergarten 3 times" so now she's in first grade. I took her back to school armed with my diagnosis - well they don't have to accept my doctor's diagnosis now the district wants to do their testing on her. Her 3rd year in the AISD and they wait until I have her diagnosed through a qualified doctor. So they led me to believe we were required by law to let them do their testing so now that they have they say she doesn't have it she only has ADHD. THEY DISPUTE HER AUTISM so they will not acknowledge that she has it for learning purposes or behavior purposes. Now she was diagnosed with High Functioning Autism. ADHD, Sensory Integration and lack of motor skills affecting coordination by a developmental pediatrician. So they call in their "autism team" which was made up of a school diagnostician and a INTERN child physiologist and a speech person (i don't know her exact title) and they came up with ADHD and nothing else. That's where we are at now. It is a constant battle just to get basic human decency for my daughter. They had a OT lady in there that said she could see alot of sensory issues and the school diagnostician interrupted her to say it's all an attention problem, but since that OT lady said that she needs OT so they are going to give it to her ONCE A MONTH and the will be charging my daughter's Medicaid for it. She lacks social skills alot and they said they would have the school counselor do social skills therapy which is them waiting for a situation arise and then address it. Oh and charge my daughter's Medicaid for that, too. She's already in OT privately and I am afraid of them charging her Medicaid for a different diagnosis and it messing up what I am doing for her privately. I absolutely hate the school system. I would like to know how they don't have to legally accept the doctor's diagnosis she is alto more qualified than the people they have doing their testing. I mean if it was a kid in a wheelchair - they wouldn't say your doctor is full of sh*t and we want to do our own testing to make sure he can't walk and deny him his wheelchair until they get all the paperwork in. It's just as obvious that there is something "wrong" with my daughter it's just in her brain instead of being physical. I mean spend 5 minutes with her and you can see she's not the same as other 7 yr. olds. The Federal govt. DESPERATELY NEEDS TO DO SOMETHING ABOUT ALL THESE STATES AND SCHOOLS!!!!!!!!!!!! They treat these kids so badly and they already have a hard enough time living with Autism. Their families have enough to deal with day to day without having to fight the state and school every step of the way. My Autistic daughter deserves an eduction just as much as the kids that are "normal" do.

cassie

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