Looking back...

It's been about a year since we knew something wasn't quite right with EK. When I think back on all that we've been through this past year, it's quite overwhelming. Things have changed a lot! No one could have prepared me for what was ahead. I wouldn't have believed them.

For those of you who don't know EK's history, let me bring you up to speed. (It's good to have this written down as well since my memory isn't as good as it used to be.) EK hit all her milestones within "normal" ranges. She had a couple words at a year and each month added some new words. There were a few abnormal things like putting objects in her mouth, but she was my first. I had nothing to compare it too. Around her 2nd birthday, I was concerned that she couldn't jump yet. I tried to teach her, but to no avail. She finally mastered it at 2 1/2. Little things like this concerned me, but I just thought she was a little behind. Her speech wasn't great either. She answered basic questions but didn't always act like she understood what I was saying. She rarely could follow a command I gave her (like, "Go find your shoes). Was it just her strong-willed personality though or did she really not understand? I wish I had more video of her younger years, b/c now there are things I can't remember if she did or not. It's been so long since she's answered a question with a "yes" or "no". I miss the "I yuv you's".

So, about a year ago, knowing that I had a few minor concerns about her development, I decided to put her in a preschool setting. I hoped that other children would have a positive influence on her speech and desire to do activities, like coloring. I never dreamed it would lead us where it did. She soon spiraled out of control. No longer could I take her on errands without worrying that she'd have a meltdown. We quit going out to restaurants for the same reason. We limited our outings to places like church and the playground. I started researching to see what could be wrong. Someone first suggested "Sensory Processing Disorder". As I read more, I could see so many characteristics in EK. Things like: doesn't play with toys, doesn't respond to pain, is constantly moving, difficulty learning new motor skills, oversensitive to light or sound, difficulty with transitions, etc. I did see in some literature that most autistic children have SPD but not all kids with SPD have autism. I was comforted by that at first.

The same person that suggested SPD, also told us to contact Early Childhood Intervention. They offer services to children from birth to 3 (until they qualify for public school.) We did and they came out to do a short evaluation. She was soon turning 3 so ECI made an appointment with the school system. I'll never forget the night before we went to the school evaluation. I specifically remember telling Keith that the worst thing they could tell me was that she had autism. I was hoping for anything else.

The school evaluation showed strong indicators of autism. After that appointment I came home determined to read as much as I could to decide how to help our girl. We started private OT soon after. EK started preschool for autistic kids as soon as she turned 3 in January. We had the formal diagnosis in February by a developmental pediatrician. After some reading, we decided to remove gluten (wheat) and dairy from her diet. We started private speech soon after. We also started some in-home behavior therapy (ABA) in March.

So, where are we now? I wish I could tell you that therapy has helped immensely, but it hasn't. We have so far to go! It's rather frustrating. I think in some respects we've lost more of her. Her speech is almost non-existent. A year ago, she mostly repeated what you said (echolalia) but would also use it appropriately at times. I remember telling her one day that we were going to color and she said "Sit at the table. Not in your mouth". Oh, how I miss that!!! She'd also yell from her carseat "Diet coke please, thank you" when I pulled up to a fast food restaurant. :) I'm totally confused as to why she's quit talking. Is it a control thing? Is there a scientific reason she's not talking? I just don't know!

Lately she's much better at following directions. She still protests some when you ask her to do fine motor tasks but it's not the fit we had a couple months ago. I took her to Target yesterday to get diapers and she didn't freak out. I carried all 32 pounds of her the whole time, but she didn't fuss. The last time we attempted to enter Target was a nightmare. We have a good routine at church, which has helped immensely. She behaved pretty well when I dropped her off at a friend's house Monday morning. There's some progress in some areas, but the lack of speech is REALLY disappointing and we're not really sure how to get it out of her. You can't make her talk. Most kids want to talk and tell you what they need, what they'd like, etc. EK doesn't. She won't even repeat a word I ask her to say anymore. It's sad.

I pray that in the coming weeks/months, I'll be able to share that she IS talking. What a happy day that will be! I know that God is able to heal our EK and show us how to teach her and motivate her. I pray that it's His will for her to improve. I really want to hear her thoughts and feelings. I want to hear her sing songs again. I want to see her interact with her sister. I have hope that she will do all these things one day. More than my desires though, I truly want God's will to be done and that's ultimately where my hope and trust is.

Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.