Childhood Apraxia of Speech

This story starts like so many other Apraxia stories start. Luke was a quiet baby. When his big brother Cody was born, he came out screaming. He screamed and screamed. When they took him through a door into another room to clean him and weigh him, we could still hear him screaming in the delivery room. The nurses got a good laugh from it. When Luke was born though, he was very quiet. So quiet that it scared me. Just as I was asking if he was ok, I heard this tiny little sound come from his mouth.  He was very healthy though, his APGAR was 9/9.  So no obvious medical reason for this.

The second baby is really at a disadvantage. It's hard to not compare them to the first born. And by compare I don't mean in the negative way, just in general. When Cody was tiny, he was in constant motion. He would lay on the changing table or floor, and move his arms and legs like he was running a marathon. Luke's legs were covered from his toes to his thighs with casts (due to positional clubfeet) or special shoes on and off for most of the first year of his life. He never really did the running in place thing. I was never sure if it was just a difference in their personalities, or if the casts and shoes played a part in that.

Cody was very talkative, even in the beginning. I have video of him chattering away before he could even roll over. And he hasn't stopped talking to this day. Luke on the other hand, did not babble, chatter or coo much. He did some, but nothing near what Cody did. I assumed it was just the difference between the two and didn't think much of it.

We kept waiting and waiting for his first real word. He learned mama and dada around his first birthday. We kept waiting for more. I'm sad to say that I honestly don't know what his first real word was. Even when he said things back then, they were hard to understand. So pin pointing what the first "real" word was is difficult.

Around 18 months his pediatrician referred us to Early Intervention. I put off calling them. He was enrolled in EI briefly at a year old for gross motor skill issues (he didn't crawl until 11 months, walked at almost 18 months), and I was not impressed with the services that he received. I kept hoping that he would start talking and we wouldn't have to go through the process with them again.

Around his 2nd birthday I finally called, and the process began. In December 2010 we had the big evaluation done, and they determined that he was eligible for speech 60 minutes every other week, and occupational therapy 60 minutes every other MONTH. The OT was for an issue with his thumb that still isn't fully resolved. He saw the EI OT person twice in six months, it was a huge flop.

Luke started speech in January 2011 with a speech therapist who was contracted by the county, so not an actual county employee. She owns her own speech therapy business, and 20% of her time is spent with early intervention cases.

I loved his SLP from the start. Luke adored her. He got excited when she came to the house, he enjoyed his time with her. She worked with EI to change our time, going from 60 minutes every other week to 30 minutes once a week, to finally 60 minutes once a week toward the end of our time with her. At one point I asked her about Apraxia, as I had stumbled across information about it online, and her response was "maybe, but I'm not sure".

In the six months with her, Luke made zero progress. I learned through her that speech within early intervention is basically "play based" therapy. There is very little, if any, structure. I had envisioned speech where Luke sat at a table, working with predetermined toys and other items, for a structured session. What EI put forth was basically Luke playing in our living room with toys, while his SLP tried to get him to say basic words such as hi, ball, on, more, etc. I became very frustrated as it was obvious that therapy like that wasn't going to help him, but it never changed.

In July 2010 I took Luke for an evaluation in a clinic that specializes in Apraxia. A few weeks earlier I had stumbled across a blog by a woman in my area (though I didn't know she was local at the time). Her daughter has apraxia, and through a link on her blog, I sent her a friend request on Facebook. Once we realized we live very close to each other, we started talking, and through her I got the information for the clinic.  His evaluation was with the director of the clinic and it went very well. She set us up to begin speech therapy in September with one of her associates. She wouldn't give a diagnosis, but referred us to a developmental pediatrician.

In August 2010 we met with the county's Child Find program. It is our county's school aged program. Since Luke was close to turning 3, he was transitioned out of early intervention, and into Child Find. During the Individualized Education Program (IEP) meeting, we learned that the county would be giving him 60 minutes a week with a special education teacher, not speech therapist. Occupational therapy was being completely dropped. When I asked about this, we were told that every child "whether they have Down Syndrome or Apraxia" receives a resource teacher.

In the end we accepted what they offered, and continued to pray that insurance would come through so that we could pursue private speech therapy (as the IEP person pointed out several times, that we could go with private if needed).

The day after our IEP meeting we met with the developmental pediatrician. The appointment took 2 hours and was very thorough. This is where we got the official Apraxia diagnosis. If you're reading this, need a developmental pediatrician, and are in the metropolitan Washington D.C. area (or are within driving distance of Bethesda, MD and are desperately looking for a good developmental pediatrician that you're willing to travel to see!), look up Dr. Chuck Conlon. He is wonderful.  I can provide his contact information if you aren't able to find it.

Sessions with the resource teacher were a huge disaster. Luke did not like her at all. He went from being excited to see his SLP, to throwing a fit whenever the resource teacher came to the house. I have never seen Luke act like he did when she was around, and I haven't seen him act like that with anyone else since then.  He is normally a very laid back, happy, easy going boy.  He cried, he looked at me with his begging eyes. He grabbed the woman's shirt, pulled on her, saying GO. Watching him struggle to get the word "go" out made me cry. Seeing how insistent he was that she GO and how determined he was to make that vocalization so she would GO made me cry even more. 

Normally I would have been willing to work though that, to work on making him more happy when she was there, except I didn't like her either. Not only was she not qualified to help him (which wasn't her fault, she was just doing what her job told her to do), but something about her did not sit right with me. I always had an uneasy feeling about her. I felt judged every time she was there, because of the questions and comments she would make. Trying to get her to tell me when the next session would be was like pulling teeth. One day she showed up for a session after not telling me what time she would be there. I refused to let her in the house. She started taking Luke back to his bedroom for sessions (I was always there), something I wasn't comfortable with. It just felt like a huge intrusion that wasn't necessary for what she was there for.

One day she turned to me and said, have you ever had Luke's speech evaluated. WHAT? It was like she just had this huge light bulb go off, like she thought she just figured out what was wrong with him. I just told her that we had, and that I had given copies of the results to the IEP team. I knew then that she didn't even know anything about Luke, despite the fact that early intervention, and his SLP, had sent all of his information to Child Find.

During all of this I had been going back and forth with the SLP at the clinic that evaluated Luke. We were in the middle of changing insurance, trying to figure out our new insurance. The verbiage in the insurance papers made it hard to figure out if they would our wouldn't cover private speech therapy. They won't cover for a developmental delay, as the school system is legally required to provide therapy for free. Apraxia isn't a developmental delay, but some insurance companies categorize it as such. In the end, the director agreed to take Luke on as a patient with the understanding that if insurance didn't come through for us, we may not be able to continue. At $101.25 for each 45 minute session, we didn't know how we would afford it if insurance didn't come through. On September 12th Luke began his PROMPT therapy with his current SLP, and we prayed that we would get good news from our insurance.

My last straw with the resource teacher happened in his bedroom. She sat in there with us for the entire session, watching Luke play with his toys. Doing very little in the way of speech therapy. At the end, she asked me if I would let the school test him. I asked for what...her response was "oh, you know". Um, no, I don't know! After some hemming and hawing, she finally mentioned autism. I was floored. I informed her that two developmental pediatricians and a SLP who specializes in autism had all said that he showed no signs of it. I could tell that my words didn't matter. I knew then that I wasn't going to let her be around my son again. I refused to have my son labeled as something that he wasn't by the school system.  That night I promised Luke that she wouldn't be coming back.

That week I checked my email to find that our insurance company had covered Luke's September PROMPT sessions that we had mailed a claim in for. The message indicated that a check was on the way to us to reimburse 80% of the therapy cost. Just a couple days earlier the SLP had talked with me about going to twice a week PROMPT therapy with Luke. She believed that he really needed it. My parents had offered to pay for the 2nd session until either insurance or a grant I had applied for came through. Finding out that our insurance was covering his therapy, without a fight, was the best news we had gotten in a long time. I immediately called Child Find and withdrew Luke from the services.

We're going into month five of PROMPT. Month three of twice a week PROMPT. I can honestly say that the progress has been amazing. I think his SLP is concerned that we will get frustrated that he's not progressing faster. Ever ytime she brings it up, I assure her that we are more than happy. After spending 6 months with no progress with early intervention, and seeing so much progress in such a short period of time with her, we know he's where he needs to be.

And just as importantly, Luke loves going there. He gets excited when we drive there. He does his best to say his SLP's name. Even more impressive? Not only is he saying more words clearly, but he's TRYING to say other words, something he wasn't doing previously. So not only is she giving him the gift of speech, she has also given him the gift of confidence. The confidence to try new words. And for that, I am forever grateful.