The diagnosis

It’s funny. I have been pushing for months for a diagnosis for Henry so we could get him the proper therapy. I watched, I listened, I read, I researched. I was convinced it was apraxia. I wanted to be able to move forward knowing what we were really dealing with and feel like I had some idea of what I should do. I needed to not feel so helpless.  And then the phone call came, the day we finally got this diagnosis… one that we were waiting for and dreading all at the same time. It confirmed our suspicions and and our greatest fear. I knew Henry wasn’t autistic, and I know so many children out there have it so much worse, but this is my baby, my boy…my joy.

I had read enough to know that this wasn’t something you treat for a year and move on. It’s likely there would be years of treatment and that it would possibly lead to other difficulties down the road. It was devastating. I crumbled. I think I had been holding on so tight for so long. I was exhausted by the researching, the pushing back at the doctors, the appointments, the phone calls… and just thinking about what it all could mean. When I heard the word apraxia from someone else’s mouth in regards to my son, suddenly it became very real and very final and every ounce of energy drained from my body. I remember getting off the phone and crying so hard hoping Henry wouldn’t see me. I would have slept for a week straight if I could have. I felt that heavy. But then beyond that came some clarity and some purpose and I guess some acceptance. I felt had to gain some sort of control over the situation. For me this meant further researching, organizing more therapy appointments, fighting the insurance company and figuring out what I can do at home to help Henry’s speech. Looking back I understand my need to do these things, and they were the right things. But I was a fool to think I could get “control” of it or even fully have a handle on it.  Apraxia just doesn’t work that way. It’s not neat and tidy like 1+2=3.  It’s different for every child. Sometimes it goes one step forward and two steps back for no apparent reason. I know now I can only do the best I can do… be an advocate for my son and love him to bits and pieces. I have to remind myself, even today, that I have to cut myself a break. I am not a speech therapist. I cannot cure this. I can only do what I’m doing right now.

I have another blog that are letters to my dear Henry… they are more personal and varied… not just about apraxia. But I wanted to share this post after we received the diagnosis:

Dear Henry

I have to be honest, I’ve been putting off this post. I wasn’t really sure what to say, but now realize this will be part of our everyday life, and therefore, it will be part of your blog. I have to accept that, I’m working on it.  We recently found out you have Apraxia of Speech. This is the opinion of four different specialists. I had hoped I’d find someone who would say something different.

I guess simply put, this is a speech disorder where your brain can’t make the connections needed to make the motor movements to say words as they come to mind. You may know what you want to say, but not know how to get the words out. It sounds very frustrating for you and I worry as you continue to get so much smarter everyday and have more complicated thoughts that this will really be something that hurts you. We are doing everything we can to give you a voice.  You are in speech therapy and occupational therapy, and soon a special playgroup where other kids like you will be playing and learning and having fun. Soon you will be booked with one to two “appointments” per day…whether it’s an outside speech therapist, the OT, SLP or DT from Birth23, gymnastics, or your playgroup…you are one busy and in demand little guy! I promise to do everything I can to keep it fun! Also, you are a pro at sign language! You know at least 60 signs and counting! You learned to sign “I love you” and when you signed that to me it just about left me in a puddle on the floor I was so warm and happy!

I’m working on putting together a picture system for you (PECS). This is another means for you to communicate. You will be able to pull out a picture card to show me what you want, or even make sentences with the pictures in a special book. I think it will be a lot of fun and we will learn a lot about each other.

In other news, we have started to have a “word of the week” and this week’s word was “GO!”. We raced cars, threw balls, chased each other…I’ve had to have said it hundreds of times this week. Generally you made a sort of grunt in the same tone of voice I said go, or you would do the ASL sign for go… and that was great! But once, just once, daddy actually heard the word “Go”!  We are so happy about this. I know it’s hard to retrieve words you may say once or twice, so no pressure, but we can’t wait to hear you again soon!

I’m going to start keeping track of your speech progress every time I post… It will help me keep track of all of your wonderful achievements so I can look back and see how far we’ve come! I love you!

Mom

This week we have heard the following words: mama, dada, ha (hot), go, mo (more)

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