Autism Awarness

Today’s post was written by another mama, the author of http://www.crohniebolognaibd.blogspot.com/ . She has been so kind as to offer a peek into her family’s beginning travels with Autism. I hope that some of you may find this either helpful or informative.

April is Autism Awareness Month April is Autism Awareness Month. In our home, Autism Awareness happens every day. So for the last day of April I share with you this tiny peek into how that initial discovery worked out for us. What we are doing now. How those efforts are panning out, and what we are still working on.

Shine a light on Autism.

An Autism Diagnosis is either a confirmation of a suspicion, or it’s an exposure of a truth most parents saw, but were characterizing as other behavioral needs.

After diagnosis there is a sense of loss and grief. The idea that your child is just going through a rough patch and will overcome this in a matter of months is over. What caused this? Is there a genetic component? Is it environmental? Is it diet? Is there anything more I can do to make this better? The questions build from there. The reach to understand what caused this thing is all consuming.

No one goes into parenthood planning for their child to struggle. No parent signs up for the laundry list of worry. Will he grow up and be an independent adult who goes to college, has a career that makes him happy, and will pay his bills? Will he have the social skills to find a loving spouse and someday make beautiful children that he can nurture? By then will he have gained the know-how to keep it all together? The dreams you automatically assume for your child at birth are replaced with questions.

Then there is the question of how to move forward. Here is what we did: We suspected from early on that something wasn’t quite right. Our son screamed a lot, wouldn’t sleep, was verbally behind and socially outmatched by his peers. For a while we wondered if he had a hearing problem and got him tested. The older he got, the further he fell socially behind his friends, even the ones much younger than him. In addition, we experienced delays in speech, social quirks such as lack of eye contact or inability to intuit others emotions. Compulsive things like shutting all doors, lining things up, and toys that only work ‘just so’. He experiences other manifestations like hand flapping, rocking, spinning, and head butting. In addition, we observed a limited diet stemming from an inability to tolerate sensation of certain foods. He quite often becomes overwhelmed by self care tasks such as dressing, potty, washing body, hands, and or face, and brushing teeth. He would cry from tummy aches and have digestive difficulties and even accidents. We also help him cope with emotional outbursts of aggression and an inability to self regulate. If everyone else is play fighting like a ninja, he is really fighting and hitting like a ninja. If kids are running and screaming, then stop; he has a hard time turning it off, and will often just continue screaming until we help him stop.

It was beyond obvious that something was seriously wrong when we began to tailor our life around what we felt our boy could tolerate. We believed our doctors suggestion to not worry until he was three years old. We ignored that inner nagging truth that something wasn’t quite right. We had allowed ourselves to be assuaged by the kind words of friends and family for too long. No one observes your child and tells you, ‘Girl, you need to get your boy some serious help.’ Instead we got plenty of, ‘My son does that too.’ or ‘It’s hard being three.’ Kind words from good, gentle people. It became clear once we realized our family had been avoiding functions and outings. We even prepared for ‘quick exits’ when we did venture out. We stopped eating at restaurants. The pattern we had begun to live was not normal or sustaining. We took our son to the doctor again.

We were assured that all boys are slow to talk; he will speak when he has something to say. You should spank him as we have not provided good enough discipline. We’ve spoiled and over indulged him. You are comparing him to older siblings- it is not helpful to compare children. In the end, it was suggested thatourson mayhaveOppositionalDefiantDisorder.

At that point we asked for a referral to the local children’s hospital to have him tested. We did not believe that he was oppositional defiant, but something else was going on. The waiting list was eight plus months for an appointment, and a year before he would get a full exam. That was too long a wait for us as we felt we had already spent so much time going in the wrong direction. We took our son to the local special needs branch of our school system which does a comprehensive screening of social, speech, cognitive, fine and gross motor skills, and hearing tests. Our boy was classified as Autism Spectrum and we were offered resources. However, we were also in the middle of a move to another state and could not accept services or the IEP that was offered. Knowing what I know now, and looking back on that decision, I should have gotten the IEP before leaving the state.

We told family and friends about our sons diagnosis as we needed to be surrounded in support and understanding. It immediately made a difference in how he was treated by some family members, who until then, were working under the assumption that our son was an oversensitive hand full who refused to sit still. Our son has been treated with care and compassion from that time on.

From there I began to read. I stayed up late every night staring at my computer, taking notes, comparing research, diet, varying cultures approach, opening my mind and widening my heart to Autism. I learned from those that went before me, and actively applied knowledge I felt confident I could fully implement correctly to achieve the desired results.

The main change we made was to switch to what is known as the ‘Autism Diet’. It is best described as Gluten Free, Casein Free. Gluten is the protein composite in foods processed from wheat. It gives breads rise and texture. Gluten is also found in soaps, lotions, and as filler in foods such as lunch meat. Casein is the protein in mammal milk. It is a main ingredient in cheese and is a food additive.

Each family begins this diet differently. I only wanted to eliminate those things that were a deficit to our son. I began with removing the Dairy and Casein. Basically because I knew the code words for it and felt I could do that successfully. We quickly saw improvement; less spinning and screaming. One Saturday morning my husband and I were sitting in our kitchen enjoying each other over coffee. He looked over at me and asked, “Do you hear that?” I look around; trying to catch what he was referring to. “No, what are you talking about?” He nods his head towards our son quietly playing. “It’s quiet. He’s not screaming.” We knew from that moment on that we were never going back to dairy. Hope grew that day.

Emboldened by our successful results, we removed Gluten. Our son began to sleep better and we started to get more words versus grunting, pointing and melt down. Over time he started to have more speech that we could easily understand. We could now brush his teeth and wash his face. He became potty trained during the day. He began to eat foods he never tried before. He could ask for what he wanted. He began to sing and hum on his own. One evening he crawled in bed for cuddles. He noticed the sparkles on our bedroom ceiling and began to sing ‘Twinkle Twinkle Little Star’ in his sweet little voice. I know I had sung that song to him a hundred times; not really knowing if he was taking it all in. And here he was singing it to me. I gazed over at this wonderful boy in my arms memorizing his features as he formed the words, eyes dancing over the sparkles up above us. I could feel my heart fill with love, joy and gratefulness. In the middle of my mommy moment he looked over to me and said, “C’mon Mama, sing!” And so we did.

He still had horrid rashes. Red, raised dry patches that would bother him, they were weepy and would smell as he would not tolerate medical tape to apply a covering. He would itch all over and cry. So after reading, we cut out soy as well. His rashes are better and he only gets them when he inadvertently eats something he shouldn’t.

Our new doctor suggested we avoid food dye for our lil’ guy as she had read a study showing benefit. We eagerly followed through, welcome to have a doctor validating, versus telling us we were nuts for trying. Our doctor also fully agrees with our use of the Autism Diet and has commented on the improvements in our son over time with her exams during his well care visits.

In total we are Gluten Free, Dairy/Casein Free, Soy Free, and Food Dye Free- particularly red dye.

I have always been that mom who is nutritionally aware and made most of the snacks my children ate. Baking Gluten Free is quite similar to what I was doing before. Just differentingredientsheaded towardsthesamedelicious end goal. I bake our bread, muffins, cookies, cakes, pies, pizza dough and every other yummy thing any kid would love to eat. I make his cheese and am a militant label reader.

Our pantry went through a much needed overhaul. Convenience items such as Goldfish crackers, wheat thins, and most every store bought cookie, pretzel or pastry had to go. It also meant giving up pre packaged foods in general. Standard macaroni and cheese, pre packaged soups, sauces, and pasta all found a scrumptious yet safe replacement. We now enjoy beautiful, delicious food made of unprocessed, basic ingredients without those between meal crackers or crisps.

We still have more work to do. Now I am restarting the process of getting our son evaluated in our new state to get an IEP in place so he can get the various therapies on board. I am still working on his sense of danger, i.e. He has none, so darting into the street is a common thing we are trying to help him with. We are helping him with transition away from his routine. He is learning patience, calming techniques, quiet voice, social skills, (most of our time is spent on social skills) and more.

But we have gained so much. Because of the Autism Diet he has gone from a frustrated, confused, screaming little person to a boy who can communicate, count, sing, draw a picture, and be happy. He has come so far and will continue to improve.

There is no quick fix or stepping in to save the day. It is the every day, all day, work, patience, diet, guidance and energy put out by dedicated parents that gets the job done. The effort and satisfaction in implementing the Autism Diet feels like a rescue mission for my child’s future. No surrender and no giving up until he can be successful on his own.

Thank you so much Christy for sharing I really got something knew from your story. If you found this story intriguing you can also follow along her facebook fan page https://www.facebook.com/CrohnieBolognaIbd. This was a guest post from Christy who is the author owner of http://crohniebolognaibd.blogspot.com/, loving wife, and mother.

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