Tuesday, February 2, 2010

Sucker-punched


The twins are turning 3 on the 20th. They are in the process of transitioning from county services to being under the supervision of the school district. Their overall development needed to be assessed to determine what services they would continue to receive, and so two speech and development pathologists came to my house yesterday morning. They were early. I didn’t get to vacuum the living room.

The twins were fairly cooperative. It took about two hours to test them and ask me about a gazillion questions. The pathologists quickly came up with their assessments of my children.

They are going to recommend that Daniel continues the speech therapy he has now. Daniel is doing a lot more talking, but has trouble articulating words. He’s also still drooling. He’s moderately behind in terms of how many words he should be using, but overall, they weren’t very concerned. They were pleased about the progress he had made in the past year.

They were baffled by Ella. Apparently, Ella did really really well in various parts of the testing. She relates to the world visually, is great with spatial concepts and has an above-average understanding as to how things work.

Ella did poorly in the whole talking and understanding what people are saying bit. The pathologist pointed out a lot of things I had noticed, but hadn’t really dwelled upon.

Ella mimics. Often she says the last word I say in the form of a question. The few sentences she puts together are scripted: usually from something I or another person says often or something she has heard on television. The rest of the “words” she says are complete nonsense, what speech therapists refer to as “jargon.” Apparently, she should have dropped the jargon a long time ago. She rarely follows direction, which I attributed to her “silliness.” (I ask her to put her shoes away. She stares at me and smiles.)

On the other hand, she is social. She loves hugs and kisses and is happy to be in the company of others. She plays with her brothers (when they let her) and enjoys being read to. She makes eye-contact and smiles all of the time.

The pathologists said things like “processing disorder,” “need a full evaluation from a doctor who specializes in these things,” “huge discrepancy between her abilities,” “let’s see if we can find a why behind the matter,” and “autism spectrum disorder.”

They were interested in her preoccupation with music and her spinning, and asked about any obsessive behaviors she has. They jotted down notes when I mentioned that she doesn’t budge when the television is on, and that she plays with her toy computer for long periods of time. They noted how often she counted objects.

Ella doesn’t exhibit any of those symptoms that autistic people in television shows have: she doesn’t stack blocks or revert into herself nor does she require a rigid schedule. She is excessively happy, bubbly, exuberant, and is seemingly as passionate about life as a two-year old could be.

On the other hand, she often screams like a banshee when things don’t go her way. Much of the time she won’t stop screaming unless I put the television on, which has a calming effect on her.

I started crying when the pathologists were explaining all of the symptoms of autism that Ella didn’t exhibit: impaired social interaction, excessive repetitive behaviors, and they told me lots of kids with autism have food allergies.

I cried because I was planning to talk to the doctor about the possibility of Ella having a food allergy- she gets terrible stomach problems after she eats certain foods.

It’s been over 24 hours since they left. I stopped shaking three hours after they drove off.

Ella has already been put through a whole rigamarole with her heart and kidneys and the whole genetic testing thing to make sure she didn’t have some weird disorder.

Of course, I’ve spent the past day scrutinizing her behavior and browsing through information about speech delays and autism. Ella just doesn’t quite fit the mold. I don’t buy it. I’m 80% confident that she is going to make great strides in language development in the next year and that the discrepancy between her abilities will narrow and she will just be considered “brilliant.” Silly… but brilliant.

On the other hand, there are some odd things about Ella. She often exhibits asymmetrical facial features, speaks in a sing-song voice, and we have often joked that she lives in her own happy little world.

Either way, it’s okay. It could not possibly change the way I feel about her. Sometimes John and I get her out of her crib at night if we hear her singing to herself, just to have time alone with her, because she’s such a delightful little person.

I will do whatever it takes to make sure she gets whatever treatment or therapy she needs, but if there is something wrong, I promise not to freak out, not to blame vaccines, not to become obsessed with trying to fix her. I will pray and I will trust in God’s plan for my little sprite.

This is all, of course, after I get over this feeling of being sucker-punched in the gut.

15 comments:

Michelle said...

I know how you feel not because I've been there, but b/c I'm a mommy. I will pray for you and Ella.

Heidi said...

Que Sera, Sera Whatever will be will be. Holly it sounds to me as though you have 2 feet firmly planted on the ground. Whatever comes, you will find the strength and the resources to handle it.

Matt & Angie Merrill said...

If they suggest a gluten free diet, which helps with alot of food allergies, call me. I'll come over and teach you everything you need to know.

hokgardner said...

Goodness what a day you had. Just remember that no matter what diagnosis they come up with, she is still your wonderful little Ella. Nothing can change that.

Janet said...

Ella was fearfully and wonderfully created by God. He lovingingly placed her in your family and into your care! God knows what He is doing! You are wise to trust Him! Things are aren't always easy here on earth....praise the Lord that this is not our home!
You've got a wonderful family and lots of friends who will be praying and helping out in any way you need!

Janet said...

I should have previewed my post! I meant lovingly, not lovingingly :)

Melissa said...

Holly, your family will be in my prayers. I felt exactly the same way when we were hit with Evan's Cerebral Palsy diagnosis. Always remember that she is still the same little girl that you have always loved. The diagnosis will not change her, but it may help her get the extra help that she needs. God chose you to be her mommy because He knew that you could provide exactly what Ella needs.

Holly said...

Angie- I'll definitely keep that in mind. I'm wondering how you tell the difference between lactose-intolerance and celiacs. Dairy and bread are her two favorite foods, so this is gonna be tough.

Thank you friends for your encouragement. Evan is a prince... I pray for him all the time.

Julie said...

Holly,
I had a similar experience, so I know how you feel. You are very brave to blog it! Remember you know your child best, and trust your gut! I work in the social work and education field... seems like everyone is looking for a disorder/diagnosis these days- forgetting that unique personalities do exist. Sounds like your baby girl is a joy- she is who she is! (I've had to say that to my daycare providers a few times about my older son!).

Elizabeth said...

Holly, I'm sorry that happened to you and Ella but I guess its great they are on to it.
Ella is very lucky to have you and your family taking such good care of her.

Toaster said...

Holly, children with developmental delays--a.k.a. "autism spectrum disorders," as scary as that sounds--CAN catch up developmentally when provided with early diagnosis and intensive intervention. I have a close friend from graduate school whose son was in a similar position to Ella, but he's around 10 now, and I don't think he carries any kind of diagnosis at all at this point. Don't despair! :)

heather@it'stwinsanity said...

My prayers are with you... My oldest is on the spectrum and I clearly remember our first EI appointment when we first found out what lay ahead. It's been a long road, but my son is now a talkative, smart 7-yo. There is hope! :)

Kristy Kiernan said...

You can't imagine how this touched my heart. I'll be reading to see how things progress.

Anonymous said...

Whew... I don't think I breathed through that whole blog reading. My heart aches for you, but I admire you for your honesty and your willingness to believe that God has a hope and a future for your little Ella.... who just is so darn delightful!
Love, Bethany

Holly said...

Thanks Kristy and my dear Bethany. I will post updates on Ella.