Before my son was diagnosed with ASD I would frantically search out stories, blogs and articles of hope. Stories where it turned out NOT to be autism. Stories where instead of autism the child was actually deaf. Or allergic to gluten. Or whatever. These stories had happy outcomes.
I did this because the stories of autism-to-life scared me to no end. I wasn’t ready yet.
Then he was diagnosed and even more ferociously I searched for stories were the child was cured. The child had autism and the parents started a therapy and boom. The child was better. I’d look for ways to fix him. That’s the truth. I am human.
Then, as I got closer to this bitch of a thing called acceptance I changed. I stopped looking for stories about autistic kids. I stopped because the only stories being shared were about kids that were extraordinarily smart, like Rain Man, or stories where the kids had unbelievable outcomes. Nonverbal at age 5. Graduated college at age 22. Running a business at age 35.
Those stories are great. But as a mom to a nonverbal 6 year old I had to stop reading them. They didn’t seem accurate. They seemed like 1 in a million. And this wasn’t going to be our outcome.
I’d read them and I would feel like I had to grieve all over again.
At this point in Cooper’s life I am hoping for…’said his first word.’ ‘Used the toilet.’ ‘Tied his own shoe.’ ‘Made a friend.’
Then I’d find stories that were the complete opposite.
Stories that scared me to death. Like truly made me cry and kept me up at night type of stories. Stories of parents having to institutionalize their autistic kids because the care got to be more then they could handle. Stories of autistic teens hitting their parents. Hurting themselves. Stories of bullying. Of abuse. Of wandering. Of death.
I wasn’t ready for that yet either.
I just wanted to know what the future ‘could’ be. What ‘could’ I expect.
I was in an interesting spot as a mom. My son was just a typical kiddo with autism. We weren’t extraordinary. We weren’t at the extremes. And because of this I felt super alone. We no longer identified with the autistic kids that spoke. And yet my kiddo was extremely social. I called Cooper the lost child. I still do. We are on our own island.
So, I created this Facebook page. And stories of positive, real outcomes have been pouring in. Stories of autism at age 15 and 30 and 50.
Autistic kids grow up to be autistic adults.
And parents of autistic kids grow older as well.
And as a mom, that thought scares me. So many unknowns. Language, self care, using the toilet. The list goes on.
Earlier this week a wonderful woman sent me the story of her 30 year old son Dan. Dan the Man has autism. And he is living a beautiful life. Here are her words. This story is real to me. Dan is living life. A beautiful life. A life that I would LOVE for my son to have.
I am the mom of a soon to be thirty year old son so I guess I would be classified as a pioneer. He was diagnosed before the computer age and when long distance phone calls were charged by the minute. I remember having the same feelings you are experiencing and just wanted to sink myself in the depths of depression. I do remember my turning point was after I had read “Thinking In Pictures” by Temple Grandin. I decided then and there that I would learn everything I could about Autism and we would do everything available to help our son. Professional evaluations took me down every single time because they gave me no hope. I kept looking for the small things in my son to show me that he was in there and I finally got it when he was almost two years old. I was talking on the phone and mentioned that Cheerios was the only food he would eat, he got up from where he was playing and went to the pantry to get the Cheerios. I realized at that moment that he was receiving signals to his brain.
I then started researching everything I could find on Autism, calling directory assistance to get phone numbers of doctors and research places that had been referenced in the ten books I had found about Autism at the library. I found Dr. Rimland and Dr. Lovaas who seemed to know more about Autism than anyone I had ever met. It took almost three years for the wheels to completely start turning because I was afraid to take the big step into committing to a program. I had the local professionals tell me that I was wasting my time and money because there are no cures for Autism. Then I had these studies in my hand from California of children being able to mainstream into regular education through strict behavioral modification programs. I found another clinic that was having success with the biomedical treatment including testing for food allergies, heavy metal poisoning, amino acid deficiencies, vitamin and mineral deficiencies and overages, they were addressing nutritional part in the brain/gut connection. Our neurologist stopped all vaccinations as soon as we had our diagnosis. I was attending conferences to learn everything I could from all of the doctors who were the experts in the field of Autism. I would usually leave with my brain so full of information that I could barely process it all.
Long story short at age five we started a home and school based ABA program with two college students heading it up, we went to a Walsh Clinic and had all the biomedical testing done, had a spect scan to map his brain, did Auditory Integration Training and treated for overgrowth of Candida Yeast…. somewhere in the midst of all of this we started seeing changes, small at first and more as time went by. Language was the last part to emerge, he had a few words but, they usually had to be prompted.
His conversational language did not come until his late teens and about that time his social skills started to develop. He is now a very well behaved, fun, friendly and outgoing young man with Autism. He is also a cartoon information and video game genius who loves to research new information.
Daniel will celebrate his 30th birthday March 14. I can’t believe we survived those early years of no sleep and constant fits of head banging and screaming. I had to learn to think out of the box because we could not afford thousands of dollars to pay professionals. We made thousands of flash cards with pictures cut out of magazines; we used common household items as teaching tools and invested in a trampoline, which ended up being his place of learning.
Kate: Can you tell us about Dan at age 30?
He plays baseball with a Miracle League team. He is home with us, manages his money and helps around the house. He worked for a year and went to a small college for one semester. He had the only A in his freshman English class and two B’s in his other classes. He could not attend college because he could not pass a section of the high school exit exam. He passed the the English and math parts with flying colors. Alabama law said he could not attend college until he passed it. He worked for a year at Belk and then we moved to another state. He loves to bowl, play baseball, swim and travel. He never meets a stranger and loves to learn new languages. He researches cartoons and movie characters. He can name every cartoon, who dies the voice, tell you if they are deceased or living and what year the cartoon made its debut. Winnie the Pooh was our breakthrough character and Pooh was his first word.
Kate: What were the younger years like?
He attended public schools with a paraprofessional from K-12. He mainstreamed in kindergarten for art , music, lunch and PE. He fully mainstreamed in second grade with adjustments to classwork as needed. I met with the new teachers every summer to help them understand Dan and his needs. The first weeks of school I always met his classmates and explained very openly everything about Autism. They could ask any questions, this took care of any bullying or making fun of his odd behaviors. I explained all of his odd obsessions and unusual ways off learning. The kids were awesome once they knew what to expect.
Kate: When did Dan start to speak?
He was around two when he said his first word. I was singing the Winnie the Pooh song to him and our older son interrupted me so I left it hanging at Winnie the….? Dan raised his head up from my shoulder and said “Pooh” We stayed up late getting him to say it over and over. We started using that method to prompt a word from him.
His first complete sentence without a prompt after treatment for Candida Yeast was “My Brain is clear.” He was nine years old. We fought systemic Candida for many years, that stuff can do a number on the brain when it gets systemic.
Kate: What is you advice to parents?
So my words of wisdom to you would be to never give up. Stay the course and do not leave any stone unturned. I am thankful that I did not listen too many of the so called professionals who told me that he would never make progress because there are no cures for Autism. All cases are different and I guess they are correct in some ways because we did not cure Autism but we cured so many of the issues that were contributing to his out of control behavior. We took care of food allergies and sensitivities, gut issues, hearing sensitivities, sleep issues, out of control behavioral issues, language and learning delays and seizures which helped him. It was hard and the only regret I have is that we did not start when he was first diagnosed. It took years to correct some of the problems so do not give up after a few months if you do not see results. I gave up on the diet after several months but revisited it after additional testing, so glad I did because we saw huge changes after going back to eliminating artificial colors, dairy and preservatives.
I teared up when I read your post today because I have walked in your shoes. Praying for strength for you and all the other parents walking this path now. God bless.
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