A work in progress

Hayley's Mom has begun writing "Hayley's Story", it is as yet unfinished but I have posted what she has written so far to give you some idea of why so many of us have given our time to make Hayley's Ride happen. Now here is a little about my God Daughter. - webmaster

Hayley was diagnosed with Autism a month before her 3rd birthday, in 2005. While that experience was depressing, we had known something was wrong with her for almost a year at that point.

There had always been concerns even though I had a normal pregnancy and natural childbirth. She was a fussy baby and she refused to be calmed by anyone but me. She didn't babble or speak on time, she pointed and grunted when she wanted something or she screamed (and it was and still is ear shattering).

On her second birthday she finally said a word that held meaning: "chip" (she had just watched me pour some chips in a bowl for her bday party.) I was certain that was the breakthrough we had been waiting for, that NOW she would start talking. The doctors had been telling me to be patient and wait and I was excited!! However, her speech did not increase.

I took her to her dr and was told that if in 6 months her speech hadn't increased, we would be sent for hearing and speech evaluations. About 3 months into that waiting period I decided I didn't want to wait. I was very pregnant with my 2nd child and didn't want two children who didn't speak. (if I had only known how long I would have two non verbal children then...) We went for the evaluations and they agreed she was behind. In fact the speech therapist told me (a stay at home mom) that she could teach my child to talk in 8 weeks, something I had been unable to do in over 2 years. I was offended and didn't take Hayley back there, but did look into speech options and contacted Early On. (private speech options were not covered by my insurance and I found them too costly at the time)

Early On (which is a free service) came in and evaluated Hayley two days after I gave birth to my son. The evaluation was stressful, but went well and I was on edge waiting for the results. I began to search the internet for the symptoms my child was showing. It was at that point I came across a checklist for autism and thought, my kid is loving and has some eye contact and this doesn't fit her. It was a few weeks later (we still didn't have results back from early on) that I saw that website again. I couldn't believe I had dismissed the idea...she had more symptoms than not. I remember calling my mom and asking what I had been thinking, I was almost certain that she had autism and that her evaluation would back me up. I was right, the school district psychologist had been thinking the same thing and while they couldn't officially diagnose her (that has to be done by a neurologist) they would start working with her immediately. Starting in the fall of 2004, we had a home teacher, a speech therapist, and an occupational therapist visit the house several times a week.

Hayley began to make some progress, but it was a lot of work for everyone! We continued with the in home therapy until her 3rd birthday. Now she was too old for the in home program and we were shown a classroom environment. She would attend three half days a week and be in a classroom with 11 other students. Not all of the students would have Autism, the children in this type of class had varying disabilities. I was scared to let my little girl (who had never been to daycare) go to school. I refused to let her ride the bus and insisted on driving her. I stayed with her the first few days and eventually trusted the teacher and aides enough to leave her there. She did well, but she threw HUGE screaming fits and tried to escape quite often!

It was during this time that I began to research bio-medical treatments and read about the gluten free, casien free diet. According to the theory, in some kids on the autism spectrum, certain foods act like a drug in their system. If you remove the foods, go through the withdrawal period, the kids would be more with it, less spacey. I was very skeptical at first, but decided it was worth a try. I would take away casien first (all dairy products) and see if it made a difference. She went through a few days of begging for food she couldn't have and some tummy aches, but then the withdrawal was over. Her face (which always looked windburnt-bright red checks) began to look less irritated and her constipation problems were getting better. (there are so many things that were happening with her, it is hard to state them all!) I decided to go ahead and take out gluten as well (barley, wheats, oats and rye) and see how she did. I didn't notice any difference initially. Then at school she began to steal food at school. She succeeded once and got ahold of ONE goldfish cracker. She came home and wouldn't stop screaming, she was banging her head against anything she could and her face was bright red again. That pretty much sealed the deal for me. Hayley would be gluten and casien free for a while!

At the end of the school year we were presented with another option for school. There was a spot in a new program, a full day, 5 day a week program. It was ABA, applied behavior analysis. I had done some research on ABA and tried to work on it myself with Hayley but it was too difficult to do with the baby in the house too. I had looked into hiring someone, but that was costly so I was torn about this opportunity. I was comfortable with her current teacher and like the progress she was making (speaking a bit more, less screaming, coloring on her own, interacting with kids-at least next to other kids), but I really wanted to try out ABA with her. In the end, we decided to go with ABA and have never regretted it!