At two and a half, my son, Cole stopped drinking. I called everyone …there wasn’t anything on the Internet that made reference to a child that stopped drinking. I fed him a ton of baby food as a way to get fluids in him. I dribbled water from my fingers into his mouth. I gave him baths constantly and let him suck the sponges. Children’s Specialized Hospital made Cole a priority due to the nature of the problem. Some people wait six months to a year for their diagnosis. We got ours in a matter of weeks. Lucky, unlucky. He was seen by feeding specialists right away and was drinking soon after.
My son ran and ran. He couldn’t stop playing with light switches. Our silent boy didn’t talk and there was absolutely no eye contact. He did not communicate with us or anyone physically or verbally. He didn’t respond to directions. He didn’t respond to his name. He wouldn’t play with toys. In desperation, I’d take him on long bike rides to fill his time with “something”. and to calm him when he was tantruming. He was in his own land and we needed to pull him out of that dark place.
Today “beanie boy” is six, and although we still have miles to go on our run, he is starting to answer our questions when we ask questions. (“what is it?” is in place and “who is it?” is emerging). He is starting to have spontaneous requests instead blurting the “taught” versions. He understands our directions and follows them. He is starting to read a couple of words and knows the alphabet with the sounds of each letter. Cole still has trouble playing but will pick up a book and start looking at the pictures.
But best of all, he is hugging us and looking into our eyes. Last night, while tucking him into bed, I laid down with him for a while….he was facing me, with his hand on my hair and he was smiling at me in the dark. I think I could accept my boy’s’ silence in exchange for this affection. The absence of affection, that eye holding yours, is “the” most cruel aspect of this disease.
I recommend a well-rounded series of treatments and therapies to enhance “a chance” at success. I believe each therapy and treatment we have given Cole has contributed to his awakening. I got my child back with the following: Biomedical, ABA therapy, (Use ABA, Applied Behavior Analysis or Dir/Floor Time), Occupational Therapy, Speech Therapy and Social Skills. I’m supported in this by books, reports, professionals and parents, all of whom I’ve consulted. (S. Greenspan/Wieder’s “Engaging Autism” and it’s important to read the Lovaas Study: “Behavioral treatment and normal educational and intellectual functioning in young autistic children.” Lovaas, O. I. (1987). Journal of Consulting and Clinical Psychology, 55, 3-9.)
What we did/ are doing Biomedical: -Get a good caring Doctor well trained in DAN! protocols- That is how we found Dr Dave Dornfeld.
- Clean the gut of yeast /Fix the leaky tummy – And why not fix a tummy ache that will make your child moody and uncomfortable? I had stomach issues when I was a child and would have appreciated some attention paid to it.
- Supplements – Cole has mental challenges. I thought if I could make him physically strong, we would be working on something we COULD work on. I can’t fix his brain, change his genetics, reverse the environment trigger which lead to his autism, but I do have the power to work on his physical health. Bean had difficulties motor planning (moving through space), now he participates in a hockey league and is a strong bike rider (yes, still with training wheels but I plan to take them off this year)… with OT and the biomedical supplements he can get closer to doing the physical things that typically developing kids participate in. He is having so much fun. These physical activities make us (parents) feel better too. We all try to give our children the fun we had when we were kids. It was heart breaking to me when I was faced with the fact that my son would miss out on riding a bike or pumping on a swing. Believe me, I worked hard to give him these things.
In the very boring movie they will make about me and beanie boy, I am standing in my kitchen and there is a boom shot from above. I am opening and spilling 24 capsules a day into baby food. Next frame, I am running next to his bike, bending over to show him the motor plan of braking…next frame, I am exhaling with emotion on the rink glass while watching “the bean” skate with the biggest smile I’ve ever seen on him.
- Chelation – We have especially seen gains with the chelation and luckily the little man is responding to the oral treatment which is easier on him and the family than the I.V. version of the treatment. My husband who is more skeptical than me in all things, agrees that Beanie has gains after every chelation cycle. My husband will sit on the floor with me and administer. We use an oral syringe followed by a cookie. Dad complains about the cost but he hasn’t prevented me from buying or giving anything to Cole so he must be on board more than he is admitting.
Anyway, after every chelation cycle we’ve seen improvements and mostly social (eye contact, attention to others, joint attention) until now. Now I’m noticing more language. I played near a toxic river when I was a kid. The tests have revealed a high lead content in Cole’s system. Could I have passed my lead levels to Cole while pregnant? Although chelation is hard on his body, I think the lead removal is far more important right now. As the tests reveal the lead and other harmful metals removed, so is the cloud that was surrounding Cole’s head … he is thinking clearer…. he is gaining awareness, he is waking and I’m witnessing it.
- Gluten free/casein free/organic food – We have a compromised immune system here. Let’s treat it with care and give this little body foods it can digest. Foods that will not be poisoned with hormones and toxic pesticides. This makes a lot of sense to me. Our society is getting sick from our food, why would we expect that an autistic body could handle our polluted supply? With the casein, we saw an immediate change in C’s behaviors. He was crying everyday at school and after we took dairy from his diet, he stopped. It was somewhat dramatic and obvious that he was feeling better. People I’ve talked to think the diets are hard but they aren’t that hard after the first six months (isn’t it true of any diet? It’s all about “replacement ” like replacing pudding with yogurt and making it habitual)…I have found “replacement” foods for everything: hummus instead of cheese, coconut ice cream is amazing …almost better than ice cream and the best pancake mix is made by the company Namaste. Really the diet is the easiest thing to accomplish on the enormous list. Handwriting is a thousand times harder. There are ways to adjust to the new life style. For example, I bring C’s coconut version of ice cream to the ice cream stand and so we all can enjoy the experience of the ice cream stand without compromising his health. I’ve seen kids suffering with allergies. Why not try the diet and see if that little nose clears up? that belly will feel better? It will be worth the effort if that happens, right? (see Dr. Kenneth Bock’s book, Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies.) The only thing that is hard really is that it is expensive. Only silver-lining about the expense is that it will promote better(smaller) portion control for your child.
- 5. B12 injections – J, step up, I told myself. Getting there: 1.Talk to your sister who is a nurse or anyone else who is a nurse. They will tell you that giving a shot is no big deal 2. Time is wasting, step up 3. Read Dr. Bock’s, Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies. Go to the chapter about the life changing effects of B12. We are trying to repair a broken immune system…. it is not completely clear to me because I’m not a medical person, but I can get closer to understanding it, if I read it twice. I need to reread this chapter every once in a while to help motivate 3. Listen to your DAN doctor. Dr. Dave said it is one of the most important things and said it is a mistake to give up on this particular part of the biomedical and said that some doctors will not treat children who aren’t receiving the shots and that he strongly recommends it which I’m sure is what his peers are telling him at the bio-medical conferences……soooo and thennnnnn, step up, for your child’s sake. Remember I recommend a well-rounded treatment to enhance a chance at success. (If anyone would like me to demo the injections, please ask Dr. Dornfeld for my number so we can arrange it!:))
- HyperbaricOxygen Therapy – Haven’t done it yet . I am doing math before falling asleep. I’m doing math when I’m driving. I’m doing the math when I’m having my coffee. I am coming up empty…… I am trying not to put this family in a financial situation that we can’t climb out of…. I have planned fundraiser`s but haven’t the personality to pursue. It is “the” missing item on my list and I feel the pressure of waiting too long. It could lead to great things for my little boy. I am making a mistake by not giving this to him now and I’m aware of it. I won’t know if this is the biggest thing yet to his recovery. What stays with me is a testimony from the documentary, “Autism: Made in the U.S.A”. A mother reports that her child gained language (wh questions) after the treatments.That documentary, plus the “Double blind placebo controlled study” done by Dan Rossignol MD et. al in 2009, intrigue me of Hyperbaric`s effects. Time’s-a-wasting!
So important and must mention:
Be very sure your child is in a good ABA program. (or Floor Time program). Medically I see it like this: the work there is massaging the brain …helping it make connections. Once some connections are made, more CAN be made…almost like a jump-started engine. At home keep your child engaged in productive activities as much as you can. Let them have their stims but limit them. When you can’t engage, use educational DVDs like Sesame Street alphabet/numbers and “Your Baby can Read”. Curious George is a big teacher for C. (George, the monkey, communicates non-verbally thus Cole can understand the stories and the stories are about categories, science, nature and life events) We have a lot of books here too. When he wasn’t interested, I’d read them anyway, while he was running. Eventually he got interested. He is now asking for a few favorites and this week he pulled a book from the floor, got up on his bed and opened it. This, believe me, is a mile stone for us.
Please note that despite my optimism here, I am reserved as well. My limitless hope has limits. I am guarding myself against disappointment in the face of the work. I realize I cannot physically teach Cole all that I’m suppose to cover in an evening, in a week. I struggle to stay up to give him his Methyl B12 shots and sometimes fail at doing so. I experience guilt daily that I’m not doing enough. I see improvements in Cole but am also struggling with the disappointments. My biggest heart break this year is that he is missing kindergarten. I write this to let you know that there is realism here and that glossing over and telling you all the good that is going to happen to you is not fair. But and HOWEVER, my advice would be to put your head down, do what you can, expect no immediate rewards (which is counter to how our society works), and I’d also advise to forgive yourself when you can’t get it all done. Every child is different. The best we can do for our kids is simply defined by the best we can do.