Sunday, November 8, 2009

Eli's Story

I thought I would take this opportunity to tell my son's story. Of course it is not complete, but hopefully will explain where we are right now.

Eli was born Jan. 23, 2008 (a very strategically planned winter baby--I was NOT evacuating 9 mos pregnant again!) and a welcome addition to our family that also includes big brother Harrison, now age 4. The pregnancy was your typical normal pregnancy and his birth was actually enjoyable, so different from Harrison's very traumatic, long, nearly ending in C-Section, birth.

Eli hit all his developmental milestones just fine, give or take a few weeks, until around 14 mos. He had a few words at 12 months including mama, daddy, kit-kat (cat), milk, more and he also signed more and all done. He was breastfeed until 11 mos, so he never even got a bottle really until 12 mos, so he was late getting off the bottle. He started milk and gluten at 12 mos (we have Celiac Disease in our family so I was hesitant when to start wheat.) and seemed to be fine. Meanwhile his brother was complaining of tummy aches and his own (undiagnosed) sensory issues were still being dealt with.

We noticed around 14-16 mos that Eli had stopped saying the words he WAS saying, stopped signing and wasn't picking up NEW words. He also was suddenly not eating ANYTHING. I mean virtually nothing. I found this very odd because up until 14-16 mos, he ate EVERYTHING I put in front of him and I loved it because Harrison was SUCH a picky eater.

So at his 18 mo visit I addressed my concerns with his pediatrician and for once she didn't blow me off. Having taught Head Start and worked in Early Intervention, I knew what I had to do. I called Early Steps, Louisiana's early intervention service for children under age 3 and scheduled a screening/eval. As I suspected he tested about 6-8 mos behind on his language, slightly behind on social/emotional and slightly behind on fine motor. He also failed the autism screening.

Now, granted the 'cut off' score for the autism screening was 20 and he got 23, but still. It was enough to warrant an evaluation. Of course, Early Steps does not actually COVER the cost of diagnosis and I was advised by a few people to just let it be and let him get the speech and OT Early Steps was suggesting.

But do I normally just do what people say? Not so much.

I knew from my years of teaching that if there was even the slightest chance he DID have autism, we needed to know now and get therapy started immediately. So I did some digging and found a developmental pediatrician, the fantastic Dr. Susan Fielkow at Ochsner and scheduled an eval.

Dr. Fielkow is great and doesn't really do 'scores' on young children, which I appreciate, because someone needs to really look at the whole child to see what's going on. Eli did receive a diagnosis of autism, albeit mild.  Now this is where most people think I'm crazy or a hypochondriac looking for sympathy! They say, "but he looks you in the eye!" "He hugs you!"

Yes he does. He looks ME in the eye and he will look some strangers in the eye. And he hugs ME on HIS terms. Can I pick him up on my own and get snuggles? No, not usually. That usually sets him off. He will play games like Peek a Boo and other baby games, but that's the point, he's behind. If he's hungry, I wouldn't know other than knowing his cries because I am his mother. He does not take my hand and lead me to the fridge, or say hungry, or eat. (Although he IS making strides and does now stand in the kitchen and fuss.)

So yes, at first glance, he looks totally 'normal'...whatever that means anymore. His stims are fewer and farer between since starting therapy and they are not very noticeable--mostly visual stimming with a toy or an inanimate object. Lots of vocal stimming also, whining, crying, strange noises but little real language. He can usually be easily diverted from his repetitions and stimming with some major gross motor pressure, flips and games. He is currently obsessed with circles and loves everything circle! He is a sensory seeker so he loves the wild tossing, flipping and other fun things an OT would do :)

My son has autism. Many children do and there are tons of myths surrounding it. I encourage you to never judge that someone is making something up, or that their child does or doesn't have a certain special need. The faces of autism are drastically different but still adorable and deserving of a chance.

What are we doing for Eli?
At the moment, once a week speech therapy, occupational therapy and special instruction. We're looking into applying for a pilot program for autism therapy through Early Steps because we cannot at this point afford the ABA therapy that would benefit him.
He has also begun the gluten free diet. This is a no brainer due to me having Celiac Disease and Harrison being gluten sensitive. It remains to be seen does Eli REALLY have autism or does he have severe Celiac Disease showing as symptoms of Autism? It doesn't really matter because the treatment is the same for him, Gluten Free diet and therapies.

A recent study in Pediatrics showed that children of mothers with Celiac may be 3 times more likely to have Autism. This does not surprise me at all. The statistics speak for themselves...1 in 150 have Autism, 1 in 133 have Celiac. Do the math.

Many children are helped by the GFCF diet. Some are not. But I feel it is an easy, (mostly) harmless way to help your child. Never start the GFCF diet without professional guidance. Some autistic children are SO picky about food that if you went cold turkey they literally would dehydrate and starve themselves. Go slowly and seek help through professional organizations and your doctor/nutritionist.

My advice for parents who suspect a problem? Don't take no for an answer. Trust your gut. Maybe you're wrong and your kid is just fine. Wouldn't you rather look stupid then wait and find out later there WAS something wrong and you could have helped? You always have the final say in your child's health. Do you want to delay or not do vaccinations? Then do your research and speak your mind. (For the record we do not do shots for personal religious reasons, and Eli still has autism.)

Do you want to try the GFCF diet? Do your research and try it! Do you want to try other biomedical techniques? Again, great, do your OWN research and see what you can do. You are the authority on your child and you know what's normal and not normal for them! I personally vote for trying just about anything once to see if it will help!

I can tell you by now I know what sets Eli off and what makes his symptoms worse. Don't be afraid to be an advocate for your child. No one else will be.

We paid (or will pay) about 1000 dollars for Eli's diagnosis. It was worth every penny. It set my mind at ease, let me know what we were up against and gave me a professional to help give me guidance. So, no Eli is not your 'typical autistic child' (again, whatever THAT is supposed to mean.) but he is who he is and we'll help him learn to be the best he can be.

My child may have autism but autism does not have my child.

Please feel free to share your stories of autism and how you are coping!!

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