Apraxia? Huh?

Some of you may stumble across this blog and wonder "What is Apraxia, anyway?" I share a lot of great information in previous archived entries (menu on left column), but I recently found a great website that was full of useful and to-the-point information about apraxia and I wanted to share... Cincinnati Children's Hospital Medical Center: Conditions and Diagnoses of Apraxia. It has a great write up explaining apraxia, as well as causes, symptoms and treatment and provides other apraxia resources as well. I wanted to point out a few things that I thought were of great importance. Check out the link for more details.

The website states that Verbal/Speech Apraxia is an oral-motor speech disorder that will NOT resolve without intervention. It is a MEDICAL PROBLEM that inhibits tongue, lip, and/or jaw function. Early diagnosis and treatment improves prognosis. Treatment should be frequent and intensive.

The diagnosis can come as a hard reality even to those parents, like myself, who suspected apraxia for quite some time. It was encouraging to read "generally, children beginning therapy by 3 years of age can enter first grade with at least fair speaking skills."

It is my hope that Alex can overcome this disorder so much so that it will not impact his life in a negative way, but only make him stronger, yet humble in spirit.

Move Over Bob the Builder

Am I cute or WHAT?!

A Mother's Perspective

All of the expectations
Still loom in the back of my mind
Remembering the day that they told me
That he was more than a little behind
He looks at me with great beauty
And an always glistening eye
As if he knows theres a problem
And he is looking and asking "why?"
All of the answers he's wanting
Are still questions I ask inside
Trying to find the answers
The emotion, I'm trying to hide
I am realizing how strong God has made him
How he grows and learns more each day
He has strength and determination
I know silent he will not stay
There is a world out there that needs him
Needs all that he has to give
So through the years we will teach him
How to talk, how to love, how to live
This is but a fleeting moment
So I kneel at the bed and pray
For the strength that God has given my son
And the power to teach him today

by Mindy Wagner, mother of a child with apraxia
Found at Apraxia Kids Website

First Impressions are Lasting Impressions

As we were writing up Alex's IEP (Individualized Education Plan) back in the spring, I insisted he receive more individual speech therapy than what he was getting in a group setting at preschool. The speech therapist there has more kids than she has time and I felt Alex was not getting enough therapy. So, they set up speech therapy visits twice a week for 30 minutes (outside the classroom), in addition to his developmental preschool. At the time I was satisfied with that, and I knew that we could always fall back on it if our insurance didn't come through for us to get Alex private therapy. Several months and a severe apraxia diagnosis later, we're still in the midst of struggling with the insurance company who denies benefits. I wasn't sure if I wanted Alex to even go on to see the school system's therapist, but I thought it couldn't hurt him and if we couldn't afford to keep going for private therapy, he would already be in a routine with the school system's therapist.

Monday was our first day to Debbie, or "beh-bee" as Alex calls her. Let me just say that I honestly do not even want to ever take Alex back. My first impression of her just in the 30 minutes we were there was not good at all. First of all, she was totally unorganized, and she lacked control over the environment and with Alex. I was trying to discuss his diagnosis and history of therapy and she was uninterested in anything I had to say. She continued interrupting me and never made eye contact. I didn't like the tone of voice or the mannerisms she used with Alex. Even the building in which the therapy was located was in a rough part of town that made me feel very uncomfortable. Honestly, I felt I could do better therapy at home with Alex. I know him best and I'm learning what helps him in his therapies. We learned today that this so-called therapist is not really a therapist at all. She is not even a licensed speech pathologist, but simply a special education teacher. I was aware that she knew nothing about treating apraxia, but I was prepared to introduce her to my research and hope that something she had to offer Alex may help him along the way. I'm thinking going to see her would be a total waste of our time. We have enough on our plate as it is.

Alex's first day of developmental preschool is suppose to be Thursday, but we have an appointment that morning for his private therapy. He'll go to school on Friday. Each day as we drop Sarah off at Kindergarten, he cries for her and then goes on to whine about wanting to go to HIS school. He's excited about starting school again. I am too. I can't wait for his teachers to see how much progress he's made this summer. It's amazing to me just how far he's come in the short time he's been getting private therapy. I am so thankful for that, and look forward to what this next school year will do for Alex!

Insurance Struggles (Continued...)

We decided to continue taking Alex to therapy during the course of pursuing insurance coverage. We have come so far and it just doesn't feel right in my heart to pull him out NOW. In the meantime, the bills are adding up. I've talked with sooooo many people in the last week concerning our insurance challenges. Everyone seems very willing to help, but our chance for insurance coverage does not look good. We will be filing a grievance with the insurance company to cover the cost of the speech evaluation. The hospital will be appealing for insurance coverage for therapy. I was told today that our particular insurance company has been one of the hardest to work with concerning speech therapy services, so I really don't know what to expect. I have disected our benefits plan over and over and do not feel like it is clear as to whether his disorder is a covered benefit or not. I believe the key here is convincing the insurance company that his treatment is medically necessary and that he has a neurological disorder, NOT a developmental delay. We are at least going to give it a real good try, and then again if we have to. God help us, because we can do nothing without Your hand in all of this.

One thing I am very thankful for at this point in our journey is that I feel my husband and I are finally on the same page when it comes to the care Alex's needs for his disorder. He's helping me with the process and supporting my efforts. I couldn't have gotten this far without him. I'm just so emotionally exhausted right now over the whole insurance thing. It feels so good not to feel so alone anymore.

Alex is making some noticeable progress with his speech therapist I am happy to say. If nothing else, that makes this all worth it. One of his biggest challenges with apraxia has been leaving off sounds in words, particularly ending sounds. He is now able to say "pu-sh, u-p, hel-p" and he's really coming along nicely with the /t/ sound, such as in "ea-t" and "ou-t." That one, and /d/ are really a challenge for him, but he's trying so hard. I am so proud of how willingly Alex participates during his therapy sessions.

Insurance Struggles

I am heartbroken today as I opened a letter of DENIAL from our insurance company for speech therapy. Because we were misinformed about our coverage previously, we will now be stuck with footing the bill 100% for therapy services we've received so far. We'll also have to stop seeing our therapist because we cannot afford to keep going. I am so discouraged today. Where do we go from here?

Another Hurdle

According to a phone call placed from the hospital (where Alex receives his private therapy) to my insurance company, Alex's speech therapy services were to be covered 90% with unlimited visits. Somewhere along the line, someone was mistaken. I received a statement from our insurance company for services totaling $540 that was not covered, not a single cent. Just when I was so confident that everything was working out well for us, we're facing another hurdle. We will continue to go to our therapy sessions and pray that God will work things out. Right now our insurance company is reviewing our evaluation results to determine if we are eligible for coverage. I hope we get things worked out soon. School will be starting next week and I really had hoped to get Alex's plan of education in place by the first of the school year. We'll be rewriting his IEP soon. Since receiving all the detailed paperwork from his Occupational Therapy Evaluation, we'll be asking for OT therapy once a week through the school system as well. I can't wait until things are in place and we can have some sort of structure to our days again. It seems like it's been up in the air for quite some time. Each day is different for me. One day I feel strong and confident, the next tired and unsure, though I will continue to walk by faith, even when I cannot see...