The Learning Curve

Yesterday, I was asking the Speech Pathologist at Munroe Meyer what I should communicate to the school district regarding a plan for Levi moving forward. He told me to hang on a minute and returned to the room with a few pages describing the technique he is using to try and get Levi talking. When I came home and had a moment to look at it, this was written at the top:

"In the initial stages of assessment, diagnosis and intervention, the parents of and others close to children with Childhood Apraxia of Speech (CAS) or suspected CAS (sCAS) are embarking on a huge learning curve. Parents may feel 'swamped' with information from SLPs/SLTs and from other sources – some reliable, and some not-so-reliable. It is a time for hard work for parents as they keep the child busy with focused, relevant, enjoyable activities that work from the child’s strengths and interests."

Oh man, did that describe how I have been feeling. The word overwhelmed has come out a lot as people ask how things are going for us, but the above paragraph is a better explanation. The article he gave me was a description on how to work with "non-verbal" kids with "very severe" Apraxia. Gulp. Although it still has not been officially diagnosed, he also used that word in describing Levi in our appointment. I suppose either way, it's the closest suspicion of what is going on.  Also, in his speech therapy appointment with the school district today, the therapist told me that she notices that Levi can very obviously hear, but that he often makes sounds reminiscent of a deaf child. He bunches his tongue up in the back as a deaf child would. I told her it was interesting she said that, because I had heard a few kids on Youtube with Apraxia that were a bit older than Levi and I had made the same comment to Brian, that you could understand them, but they spoke as if they had some kind of deafness.

It has finally settled in that life has and is going to change largely for us, particularly Levi and I. This is certainly not the way I every could have imagined this year going for us, not to stay I am devastated by losing my plans for this year. It is more an adjustment to something so foreign and unexpected. I told Brian the other night that it feels like we woke up one morning and discovered that our child had suffered a stroke. Levi hasn't, but Apraxia is a common side effect of a stroke and I do feel that although it is most likely something he was born with, it has come on us all of a sudden. He is having to learn to talk, not again, but for the first time. We have speech therapy appointments four times a week now with possible Occupational Therapy being added to the list (he is getting evaluated on the 16th). I am definitely viewing our world and the future differently for us as well. We are going to put a picture board in the kitchen where he can grab a picture of the food he wants instead of hanging on the fridge or grabbing what is in reach in the cupboard. I am uneasy about leaving him in the short and long term future, as I am and will for a long time be his translator. So, yes, there is a learning curve and I feel like we will be moving down on that curve until we can start our approach back up. Once we make it through the OT evaluation and the Neurology appointment, perhaps I will feel like we are on the upswing.

A lot of you have asked me if Levi will ever learn to speak.  The answer is most likely yes!  While he is very behind and it will take years of work, it is very likely that he will speak and speak clearly enough to be understood.  So that is a huge hope that we have every reason to believe is possible.

OK, well this has maybe been a little depressing (sorry!!), so I will end with another funny story.  At the Munroe Meyer Institute the speech department is on the third floor, so every time we go we get to walk through three automatic doors, down a hall, turn a corner, and on an elevator. All along the way Levi is hitting every automatic button in sight and for those of you who know Levi, he does so excitedly. :) Well, when we were waiting on the elevator and going up to the third floor, as soon as the door opened Levi yelled an excited "Ahh!" and started sprinting off the elevator. A poor janitor was standing on the other side of the door with his cart and screamed a bit at this bursting ball of energy that was running by him. Thankfully, he started to laugh and it was pretty funny seeing Levi freak him out. He said he just wasn't expecting that to happen when the doors opened. Who would be? Anyway, I thought that was pretty funny. I need to try and get Levi to tone it down a bit on the elevator I guess.