World Autism Day - Ian's Story

Today is World Autism Day. My number one cause is helping to raise Autism Awareness and funding for research for Autism. One in 91 children are diagnosed with Autism and most of them are boys.

When our son, Ian was diagnosed, his doctor gave us a few pamphlets, recommended we find therapy, and said "There is no cure," and left it at that. She was of no help and I imagine that's what it's like for many parents who receive a diagnosis for their child. Fortunately, 4 months prior to his diagnosis, we had been made aware by his teachers that he may be autistic. I jumped on every Autism book possible and researched as much as I could. I found the most incredible site, Talk About Curing Autism. Everything I needed to know about helping Ian recover was made available to me on this site.

Right after Ian had turned 12 months old, I noticed his language start to decrease. His first word had been, "uh-oh" (used appropriately at 6 months old) and then he had graduated to dadda, cat, cookie, and other normal words. By 15 months, Ian had lost all language except the occasional Dadda. He began to talk here and there in complete jibberish. He had eczema all over his face. He stopped sleeping through the night (and no, not teething). He cried in the middle of the night as if he were in pain and would wake up sometimes 6 times. He would head bang, sometimes until his nose began to bleed. He was never really interested with toys and instead, found fascination in lining up objects: crayons, cars, block, anything. He became extremely sensitive to sounds. Half the time he stopped acknowledging when we'd call him by name. He also started chewing on EVERTHING (which I also chalked up to teething). I didn't connect these dots at the time. The two things that really bothered me were his language loss and his night terrors. I had him checked for food allergies via blood test but nothing came up glaring. I decided to cut out dairy products anyway. After doing so, his night terrors and waking up stopped and his eczema disappeared. I thought that since there seemed to be a link between asthma (which he has) and food allergies, it had to be a milk allergy. Next, I insisted he be evaluated for speech. Our doctor first wanted to refer him for a hearing check though - to which the results proved he had excellent hearing and could even hear the tiniest sounds, way quieter than most kids his age at the time (15 months). So our next stop was a speech evaluation which was combined with several other evaluations and offered by a Birth to Three program by the county. We attended and Ian passed everything with flying colors, even advanced in motor skills, except for speech. We met his future Family Coordinator at this evaluation and she was pleased we lived in a specific district which would offer Ian the best Speech Therapy. However, it was now the end of April and school would be getting out soon. By the time the school could evaluate Ian and get him rolling, there were only a few weeks. Instead, Ian went to a private program but didn't actually get started there until (20 months old). In between the school evaluation and the private therapy, Ian's grandmother (a speech language pathologist) worked with him faithfully too.

Then September came and Ian was enrolled in preschool and received speech therapy there also. Between the two therapists, Ian finally said Mama when he was two years old. His speech was progressing at a decent pace, very bumpy in the beginning, and then his two and a half year milestone arrived (which was a year ago this month!) and his teachers were concerned with Autism. At this point, my only ever encounter with Autism was the movie Rain Man so I was in shock. We attended a meeting with his school teachers and therapist, and also an Autism therapist from the school. She had us fill out the MCHAT and she spent some time with Ian during school one day. She recommended we get a referral from Ian's pedi to a doctor who could diagnose. Well, said doctor had a 2 year waiting list! In the meantime I decided I had to be Ian's best advocate and began to objectively read every piece of material I could find. I found a special pediatrician in our town who treats kids with autism but the catch 22 was you couldn't get ahead of his waiting list unless your child was already diagnosed! In the meantime of waiting for diagnosis day, the autism therapist at Ian's school went ahead and started working with him 2 days a week. At this point Ian was going to school 4 days a week (1.5 hours each day, with school Speech therapy 30 min a week in there) and also his private speech therapist 30 min a week. I was buying supplements left and right with a plan for administering them. I had already done Ian a huge favor by eliminating dairy from his diet but needed to go one step further and remove casein (cow's milk protein which is found in many non dairy foods). I started giving him calcium supplements, and a probiotic. Eventually, the supplement list graduated to include a digestive enzyme, Omega 3s (in the form of Fish Oil), a better multi vitamin, and melatonin. The melatonin we've added recently because of Ian's inability to fall asleep at night (sometimes awake in bed for 4 hours after bedtime!). There are more supplements that should be added (zinc, magnesium, etc) but we're just trying to do a little at a time to see how Ian reacts.

We had tried a gluten free diet in between but it seemed it didn't do anything different for Ian. I have seen it help other children though so there is no harm in trying to see if it will work for your autistic child. All of these supplements, combined with the casein free diet showed boosts in Ian's language development and recovery. He used to have self injurious behavior (head banging!!) but after casein was removed, it stopped. Anytime I added a new supplement, it was like someone hit the acceleration button on Ian's cruise control. I just started seeing the red flags disappear. When he was eighteen months I had bought him his first Thomas the Train toys. He would just line up his trains until one day when he was about 22 months - he actually started choo-chooing and playing with them normally! We were so excited! Ian had all these toys in a toybox he had NEVER played with and he started showing interest in these trains. So we bought him more.

We got a call when Ian was 22 months old that there was a cancellation and he could be seen that day (in 2 hours!) for an evaluation and diagnosis regarding autism. We flew to that appointment. Mind you, I had been reading for months about Autism so I knew what to expect, all the way down to the doctor's position on recovering from autism and view of biomedical treatments. Her exact words were, "If you believe in all that hocus pocus," as if we'd be bad parents for wanting to try every possible safe treatment for our child. She said she wanted to see Ian back in a year and I rolled my eyes behind her back. I was thankful for the diagnosis though, it meant Ian would have access to more therapies without all the red tape.

He still chews on everything. He still has social challenges.  And he still cannot say C or G words, like "cat" or "good"  (instead it's "tat" or "dood"). He's working hard though. He has worked the hardest to be where he is at today. Anyone who meets him would have no idea he's autistic. He is currently receiving OT for his sensitivities. His therapist is working on his need for certain stimuli and we're working hard to encourage those needs. It helps him behave better during the day (less pushing and hitting!). At this rate, it's entirely possible Ian will be able to join a mainstream kindergarten without special education.

So that is the bulk of Ian's story so far. I am sure I will think of more things I didn't write but it at least gives you an idea of our journey.

 Without the guidance of TACA, we would have been left in shambles at that doctor appointment that day. I would have been among the thousands of moms who are left without any idea of what to do and leave in tears. Instead, I was able to smile on my way out of that office because I knew I was already on the right track for Ian's recovery.

So please, donate today to TACA. You can use my handy dandy link to make a donation via credit card:
http://www.firstgiving.com/mistyobrien

Thank you for your help and support!! We appreciate you!!



PS ~ Did you know that your autistic child might be eligible for Social Security Disability Benefits? Visit the SSA site to get started on your application. Benefits help pay for therapies and other things that insurances won't cover.


June 2010 - Update! Ian has started to say words with a C or G beginning! Like Cookie & Go! Not perfect yet, but he's trying :)

Little Yancey Family  – (April 2, 2010 at 12:27 PM)  

Misty, thank you for your story. I've kept up with bits and pieces of it though GS while you were living it but am relieved that Ian has gotten so much better. And am comforted knowing there are things to help and you don't just have to accept "there is no cure".

I do have a question for you. Do YOU believe vaccinations contribute to getting autism? I've been reading up on it and though theres no proof, if spreading the vaccines out a bit can lessen the odds It would be well worth the extra money. Just wondering what your opinion was.

You can e-mail me or pm me your answer or whatever would be easiest for you. I'm just curious what you think.

~Harmonystar (Rachel)
harmonystar@juno.com

Misty  – (April 2, 2010 at 12:54 PM)  

After reading several books, I have come to this opinion: Autism is a loaded gun that needs an environmental trigger. I believe vaccinations COULD be a trigger, however I believe there are also other triggers because there are some kids who still get autism that have never been vaccinated. In Ian's case, his autism started right after his 1 year vax. Could be a coincidence or it could be the trigger. Either way, it's important for every parent to do as much research as possible and do the best they can for their children. As a precaution, Aidan has not had his 1 year vax. yet. He will when he's two and I think doing a delayed schedule is a great idea for any kid. :)

Stephanie –   – (April 2, 2010 at 1:00 PM)  

Misty (& Dan)- Thank you so much for sharing your story! Working in health care, I find it astonishing how many doctors are so quick to dismiss any and all treatments that aren't developed in a lab somewhere and doled out on a prescription only basis. You two are such loving, strong parents, and Ian (and Aidan)are so lucky to have you both!

Jodi  – (April 8, 2010 at 5:10 AM)  

Thank you for sharing your story, it was nice to read it all in one place. Like Rachel I only kept up with it through Ginger Scraps. It's also great to hear about a delayed vaccination schedule. I never heard of it and hubby and I have been going back and forth if we should vaccinate baby #2 or not. I think we will do a delayed schedule. We also decided to decline those that we didn't think were important like the ones you only need if you travel overseas.
Glad the things you have been trying are working, you are such great parents to try all these extra things for your son.

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