Tuesday, March 17, 2009


*** I started this blog on 6/23/08; Wow and ooops! This is a long one, but I want to record it. I'll probably edit the heck out of it later.

Ah, where to even begin. And WHY OH WHY did I not document it all?? Excuse me if this get long and winded, but its close to my heart today (well, everyday, but today its really on my mind). I feel so guilty it wasn't documented because its been all so amazing.

At 2 years old, Kai said 'mama' 'dada' and 'nana' and never consistently. His favorite word was "eh." If we were to try to get Kai to say a word he would shrug away and get frustrated. So, he wasn't even attempting verbal communication outside of "eh." Being two and not communicating is frustrating for all parties. We were frustrated that we couldn't understand his desires, he was frustrated that we couldn't understand him, he melted down frequently (because of not being able to communicate). I was hard to discipline during that time...how do you differentiate between tantrum and frustration?!?

I had long suspected a problem, since about 15 months but I was always told to wait until two, especially since Kai is a boy. It was very easy to notice that he was falling behind, but my doctor never seemed to worry. Kai was also excessively drooling. I'm not gonna lie, it was (is) gross. If he bends over, it FLOODED out.

At two we finally received a referral to Early Childhood Intervention (ECI). We received this referral in September. In October I had our first meeting with Agent #1. She came out and did a long evaluation of Kai's behaviors with me. This was a written eval just to see if he qualified. While answering the questions, I couldn't believe the signs we missed. Although its been two years I remember reading the "excessively drools" "over-stuffs mouth" "gags while eating" and wanting to cry. I remember thinking, why didn't anyone tell me? Why didn't I trust my instinct.

At this initial evaluation, Kai was accepted to the program. The next step was to set-up a full evaluation with him present (he was not at the first meeting). This second meeting would determine the level and intensity of services to be provided to Kai. Agent #1 set-up the second appointment for 3 weeks later. Argh! I was just ready to get started! She suggested I start learning a few signs to try to get Kai to communicate.

That night I started using the "more sign." It didn't take long before Kai was using it (like think MAYBE 2 days). Not only was he doing the sign, but he was saying "mo." WHAT?!? Just like that??

The day came (last week in October) for our full evaluation and I received a called that Agent #1 was suddenly taking leave and we would be being seen by two other Agents for this meeting. It was so upsetting to me that we had to completely re-explain our situation. What a waste of everyone's time.

At the meeting we received referrals for regular ECI therapy (bi-weekly), speech therapy (bi-weekly) and occupational therapy (monthly). ECI requires that you see one of their therapists, hence the ECI therapy. Speech, um, duh we knew we needed it. Occupational was for the drooling and low facial sensitivity symptoms. We were told that Kai was talking/communicating at a 12-18 month old level at 27 months!! However, language comprehension was at the 3 year old level.

Then all was quiet. For a MONTH I waited for them to process paperwork and set-up times; which was even more difficult because I was working 4 days a week. Agent #1 was to be my ECI therapist. Can I just say we never saw her again and leave it at that? We went through THREE agents between Mid-November and beginning of January. Being seen bi-weekly, plus holidays, you do the math....I was basically just getting to know the Agent before they were replaced. But that isn't all that important....RIGHT?? Let's get back to SPEECH!

My speech therapist calls me the weekend after Thanksgiving. Two and a half months after getting my referral. We schedule for that week. Of course, I feel so hopeless at this point because basically all I have spent two months doing is telling people why we are where we are.... Does know one else realize we are losing time??

Jen starts coming to our house every other week. I squeeze as much as I can out of her at every meeting. I'm listening to everything she's doing during these times so I can do them when she's gone. This is honestly where I wish I had blogged the whole thing so I could remember what all she did. Our focus was first to get Kai to talk...to try to makes sounds...to attempt ANYTHING vocally. After that our goal was to form those sounds into direct words. (I'm sure there is very technological terms for what I'm describing, but forgive me its been a LONG time).

She didn't come often, but somehow between the first week in December and the 2 week in January, she gave my son a voice. Yes, we had all been working on it, but something during that time click and Kai started trying.

By the time Kai and I pack up to live in Florida for the month he has about 32 solid "words." I put words in quotes because to most people they didn't sound like anything. To me they were words...sounds that he associated with objects and used on a consistent basis. My job was to encourage the use of those "words."

I have several very specific things I remember happening in Florida. It was the first time since Kai was six weeks old that I had been with him 7 days a week. I worked so hard stressing all that I was saying, communicating, etc. I'll never forget the day we were driving to the gym and he looked at the window at a strip center and said, "castle." I wouldn't have believed it had I been alone, but my friend was in the car with me was just as shocked. This word was the first unprompted word Kai ever said. It was the first word that I don't remember teaching him. Still give me goosebumps.

Another very important thing I remember in Florida still makes me cry. We were enjoying another wonderful day at the park when a kid, maybe 4, came up and was playing along side Kai. He asked Kai his name, but when Kai responded he couldn't understand him (and in his defense it didn't really sound like Kai). After the back and forth for a minute I finally stepped in and said, "His name is Kai." The kid looks at me and says, "Why does he talk like that and why is he drooling so much that's gross." I wanted to shield my sons ears and run away. I wanted to smack the other child (yeah, i said it), I wanted to cry... This couldn't go on much longer. It wasn't fair. Why my kid??

I called my ECI Agent #3 to tell her I was returning and ready to start services back up...and honestly to get some encouragement. Well, Agent #3 was no longer with ECI. This did it. I called the management, I called my speech therapist, and finally I called my doctor. My only other option was to start Our Children's House by Baylor. ECI was free, OCH not so much, and when you need to be seen weekly, that adds up, but I was at the breaking point. I wanted results and consistency.

I met with Agent #4 and my speech therapist while prepping to meet with OCH. The good news was, while away Kai doubled his vocabulary. The bad news was, non of it sounded right. ECI therapist ONLY come to your home, so after a while it became hard to get Kai to focus enough on his speech.

March we switched to OCH. Consistent, once a week (although they wanted us to come twice a week), therapy at their facility. At the first meeting I saw the difference. They forced Kai to work. The first task was to get his B sounds down. B's sounded like Gs. I've never seen him so upset. It was heartbreaking watching him get so frustrated, looking at me like "why are you doing this to me" wishing I could do it for him. I went home that day and cried o my mother-in-law. Why my kid??

We kept up the therapy. It slowly but surely started getting easier. Kai started correctly naming objects, started making appropriate sounds. In May he started putting two and three phrase sentences. The day even came where I actually waited in the lobby while he went in alone.

In June, I quit my job to stay home. Suddenly Kai exploded with talking. I'm talking overnight using three to four word phrases. He'd say things that Chad and I never knew he knew....the child could count to ten but couldn't say it! He knew the name of every train in his train box, he knew the majority of colors....things literally flowed from his mouth.

On the 28th of June, the day I started this blog entry, I walked into therapy and asked that Kai be reevaluated. I just suddenly had this feeling that we were up to speed. Kai met or exceeded all of his goals. He was speaking right on target and able to nail all appropriate sounds. I was floored.

After 7 months of therapy: 4 at ECI and 3 at OCH - we mastered our goal.

When Kai entered preschool in September, I was nervous. I was still scared about other kids and what they might say. That fear wasn't helped along when they moved Kai up a class (from old 2's to younger 3's). But, I'll never forget the day Kai's teacher told me that he was so smart and chatty. She also made a comment about how clearly he speaks. I had to laugh and then tell her about the delay. She was shocked and said she'd never guess.

Today, when I'm driving and my sweet child will not stop talking I have to remind myself how long I prayed for that. I cherish each phrase that comes out of his mouth. I still get super excited when he tells me stories. I will never forget the road to get where he is.


Debbie B said...

You made me cry. Although I knew his progress I didn't know just how much he went through.
Glad you finished this post. It's great to remember where you were so long ago.

Meg said...

Awww, tears here too! You are such a great mommy Amanda! I am so proud of you and Kai. And wish we will get our "yearly visit" sometime soon! :) haha