Elephants

There has been an elephant looming around here, and I am tired of it. I am tired of not talking. Of not saying things because I am afraid I am going to slip. Of telling others to keep hush hush about something that is nothing to be ashamed of. I am talking about autism. There is such a stigma that is placed on the word. On the diagnosis. On the child.

Logan has been in an early autism intervention study since April, 2008. When our pediatrician called us and told us about this study, I was shocked... Autism? Did she really think he might be autistic? So we took Logan through the Autism evaluations. (3 three hour days of rigorous testing, and a question and answer session with us.) After seeing Logan go through the testing, I was a little concerned, but not alarmed. He seemed to do well. Not great, but well. During the parent interview, I started to feel relieved. It seemed as if every question was not applicable to him. Our pediatrician was so wrong.

Then we were told that our 22 month old son had the speech and communication levels of an 11-13 month old. What? But he doesn't spin things. Or obsess. Or get upset if our "schedule" changes. We have no schedule. He looks at us. (Or so I thought he did..) He plays and is a happy little guy.. He is not autistic..

I was then bombarded with books and manuals and information on how to cope, as well as a briefing of what was to happen next.

We would be participating in an 18 month study consisting of two 9 month parent implemented interventions. It is a collaborative study between UM and Florida State University and is called "The Early Social Interaction Project."

www.umaccweb.com/research/ESI.html

We didn't know, and couldn't choose, which intervention we would be in first. Here is the one we have been in since April:

*25 hours of intensive intervention per week, all to be documented on weekly logs. What we did when, in 15 minute incriments:

P: people play
T: toy play
F: family chores
B: book reading
C: care giving

*Appointments with Logan's interventionist, Carrie, 3x per week, 1 hour each. (2 at our house, 1 in the clinic)

*A 1 hour "parent fidelity" taping, 1x per week, in our home. (This has become the longest, most dreaded hour of my week!!)

*Monthly psychologist assessment in the clinic 1x per month.

On paper, this might not sound like much, but it is absolutely overwhelming. Trying to work with a child for 25 hours per week is one thing, but to have to work 25 hours with a child who doesn't want to sit and do something for more than 3 minutes at a time is very difficult. All while documenting your life on paper in 15 minute increments, trying to fit in time for the older (jealous) brother, living, breathing, working, cleaning, running, and putting on a happy face for the camera.

We are nearing the end of our first 9 months. When we started this, I was positive that Logan would be "cured" by the time the first 9 months was up. But he is not. Every day that goes by makes me doubt a little more. I shouldn't doubt my own son, but I try not to get excited about the little things, knowing all too well that it may have been a fluke and he may never do it again.

My breakdown came about a month ago. I had been busy reading "Louder than Words" by Jenny McCarthy, and started to feel sorry. Sorry that my 2 1/2 year old has never called me "mama" or ran up to me just for a hug. That he doesn't understand simple instructions or speak in words more than the ones that my heart is making up out of his babbling. I emailed and canceled his video that week and said I was having a hard time dealing and needed a break. I felt like a failure for breaking, only to be commended for lasting so long.. evidentially 8 months in is a long time. My interventionist was surprised that I had lasted that long. Kind of a funny thing to hear.. evidently everyone goes through it.

Breaking was a wonderful thing. It gave me more drive to kick this thing in the butt. I wasn't going to sit idly beside and watch my son skate by each opportunity. I had to fix it. I had to work harder and be more diligent about doing everything I can. Then came loads and loads of research. So much research that my brain is numb. Followed by the decision to put Logan on a gluten free casein free (GFCF) diet.

GFCF has been shown, though not scientifically proven, to be helpful in some children with autism. I figured there is not harm in it. It is just a diet. Well, since putting Logan on the diet 3 weeks ago, he has changed dramatically. His stomach used to be big and hard, where now it is normal. He wants to sit and play for longer periods of time, has better eye contact, and really observes the world around him. He draws me into his world more and shares things with me. The other day we were in the grocery store and he looked at me, pointed up, and said "four," which was the number on the aisle sign. I was ecstatic. He has since learned how to give a high 5, talks and labels things more, communicates more of what he wants, and likes playing with shaving cream (which he would cry about before because he hated the feel of it.) And, best of all, he came downstairs the other morning and ran right to me and gave me a big hug.

We will start the next 9 months in January. It consists of playgroups and parent education sessions 1x per week, a parent fidelity video 1x per month and an evaluation 1x per month. No logs, videos only 1x per month, not 4, and sessions only 1x per week.

Logan has another intensive evaluation (just like the one at the beginning of the study) at the beginning of January to see where he is now. I don't know how he'll do. I am anxious to get the results. What I do know is that he is sweet, loving, constantly improving and, best of all, a great hugger.

Just some facts about autism

• 1 in 150 children is diagnosed with autism
• 1 in 94 boys is on the autism spectrum
• 67 children are diagnosed per day
• A new case is diagnosed almost every 20 minutes
• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are four times more likely than girls to have autism
• There is no medical detection or cure for autism

Incidence vs. Private Funding

• Leukemia: Affects 1 in 25,000 / Funding: $310 million
• Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
• Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
• Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
• Autism: Affects 1 in 150 / Funding: $42 million

National Institutes of Health Funds Allocation

• Total 2007 NIH budget: $29 billion
• Of this, $80 million goes directly to autism research. This represents 0.28% of total NIH funding.