I am writing this letter to you personally because Mary Polak is not listening to hundreds of families. Ever since I can even remember I wanted to have a family so at the age of 12 I began working full time. I worked long hard hours 6 days a week and at times had 2 jobs to save every single penny I had so I could be a stay at home mom and be the best possible mother I could be.
After being married my husband and I waited for 5 years to have children so our children would always have every single opportunity available for them. When Jessica was born on October 17, 2006 we were thrilled. She was Daddy’s little princess. She smiled willingly, giggled all the time and we both felt we could never be happier. She was such a good baby we decided to try for another one right away and our son Jacob was born 15 months later.
Shortly after Jacob was born Jessica seemed different she seemed somewhat in her own world. She would stare out windows, make repetitive humming sounds and would rock for what seemed like hours on end on the floor and ignore every person who came in contact with her including family members. One night when my husband was at work I laid down on the floor next to her and screamed in her ear repeating her name over and over again. She seemed like she was just looking through me and with no response continued rocking on the floor. My heart sank with sadness.
I kept saying to my husband something is wrong and at first he made some excuses explaining “she just has regressed because of the birth of our son Jacob.” My husband always being the strong one tried to protect my feelings to make me feel better.
I finally made and appointment with my family doctor which took one month to get into see her. I explained my concerns and with a concerned look on her face she referred me to a pediatrician. We waited another four long months just to get into see a pediatrician. After that waste of time we were then put on the list to get Jessica diagnosed through FHAN (Fraser Health Assessment Network) I filled out the paper work and received a letter back telling us there is a one year wait to get your child an assessment. I thought to myself I cannot wait a year for this there has to be some other way.
In the meantime I was suffering from depression. I had to go on antidepressants (which I might add have never had to be on in my life) I recall one horrible morning I woke up and my husband was working another long shift and couldn’t get out of bed. I felt as though I was suffering from a mental breakdown. My sister and mom had to take the day off work and drive to be by my side and help care for me and my children. I hate to burden people with my problems but I thank god I have such a great support system with my family. I don’t know how some parents get through this. We accessed a private service to get Jessica diagnosed and the end result was AUTISM. A little part of you dies inside after hearing these words. All your hopes and dreams for your child at that moment feel as though they are crashing down.
So now the hard part begins. Researching behavioral consultants, speech therapists etc. We met with several people, put Jessica on the EIBI waiting list at REACH and found a place that cost $2100.00 a month. It was a group program that the lady claimed you were getting more bang for your buck. Jessica would be receiving twenty hours a week and it was a center based program. We got one scheduled visit a month and I had some concerns about the amount of one on one time Jessica was receiving. I decided to drop in one day unannounced and discovered Jessica was in a room with one girl and three other children with Autism. I observed her humming in a corner. While one other child was lining things up, another was spinning in circles and another was playing with his fingers. This was a holding cell for the children so they could wait their turn to receive their one half hour session of one on one time.
We decided to pull Jessica out of that program, pay the $4350.00 start up at REACH and put her in the IF program for 10 hours a week.
In the meantime we have accessed private speech services. The waiting list at the Center for Child Development is 2 years and Occupational Therapy is 2 and a half years. I phoned 18 private speech therapy places, received one reply and was put on a waiting list for three months to access private speech therapy. Jessica goes two times a week at $130.00 an hour. We bought a sauna and a trampoline for our house, spent thousands of dollars on supplements and even put her on a strict diet of gluten free casein free food. We also have done 60 hours of hyperbaric oxygen treatment at $125.00 an hour.
We spend hours a day drilling her with flash cards and I read to her until my throat is sore. I try to tell myself that every second of the day her brain needs to be stimulated. This is extremely hard on our family because it is difficult to balance everything…running a household, being a wife and I do have another son who needs attention as well.
Every second of the day I think about Jessica. What lies ahead for her in the future? Will she ever lead a normal life? I love her more than words could ever describe and after hearing about so many success stories with EIBI like any parent I want the best for my child. EIBI was giving our family this chance. Like a child with any disease we would never turn our backs on these children, we would treat the problem. Autism is a disease. ABA is the only scientifically validated treatment for healing Autism. ABA is these children’s medicine. I will think about this decision every day of our lives whatever the outcome will be. This is our daughter’s and many other children’s life at stake. So today I am asking for this government to do the right thing.
Sincerely,
Lori Doucette(Parent who will never give up)
Posted by Sylvia Michalewicz at 10:00 AM
