Dyspraxia? Say What?

So Verbal Dyspraxia or Apraxia means that McKenna's brain doesn't work quite right. It could have been congenital (formed that way in the womb) or it could have been damaged somehow.

I don't think there is any way to know for sure. I think that it could have happened during her surgery at 6 months old. I don't have any big reason, I just *feel* that way. I do have video of her a few months before her surgery at 4 months old or so, blowing raspberries and making noise (vocalizations). Although even before her surgery she was rather quiet and had a funny deep laugh that we didn't hear very often. My son started laughing late and was very stingy with them for a while, but he quickly broke out and began laughing all the time. McKenna never did that.

Right after her surgery she moaned a lot, but didn't really cry much. That night she was hooked up to monitors and there seemed to be wires everywhere. I remember she had a reaction to the pain medication (or so I've assumed) they gave her in her i.v. She started going crazy moving all over the place. She was up on her hands and knees rocking and just rolling and scooting all over the crib rather spastically, but very quietly. She kept this up for like two hours even though she was clearly exhausted and had just had surgery under her arm. It kind of unnerved me. I didn't let them give her any more of that medication after that. It occurs to me as I write this I should probably get her records and see if I can figure out what they gave her.

The fact that she was born with the congenital malformation of her lymph tissue would seem to put a strike in the congenital category for her Dyspraxia too though. Dave tends to feel she was born this way. Hmmmm . . .

Anyway none of that really matters because "it is what it is" whatever it may be.

The problem with her brain is in the motor planning/programming area. From the Apraxia Kids website: "For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason."

McKenna understands speech extremely well. She scored high on her receptive speech. Everyone that has looked at her or worked with her has commented how very smart she is. She also scored very high on the social/emotional aspect of her evaluation which helps to rule out other things such as Aspergers or Autism.

I am of course happy that she seems to be developing normally and even ahead in all other areas. It is however as McKenna's speech therapist put it, "a blessing and a curse". A "curse" in the sense that McKenna is very sensitive and even self conscious sometimes about her speech. This sometimes causes her to completely clam up or refuse to try. Cole loves his sister so much. There is nothing that Cole likes to do more than laugh. That boy just loves a good laugh. Unfortunately McKenna's speech is pretty darn funny sometimes and Cole just gets so tickled. I have to admit so have I. We have noticed however that McKenna is very sensitive and embarrassed by this.

When Ms T (her therapist) noticed this she agreed that we should try not to laugh, but she also said, "this little girl is going to have to toughen up though." She reiterated what we have been told that it is going to take a few years to get McKenna speaking normally and that she will have to deal with the social ramifications of that.

McKenna's first therapy session was Wednesday and I was in a bit of shock afterwards. It took me all day to process it and deal with my thoughts and emotions. The whole thing was much more intense than I expected. Ms T is amazing! I really like her, however I wanted to punch her quite a few times. 0-: She was so hard on McKenna. She brought toys and played with McKenna the whole hour, but she made her work SO HARD for absolutely everything. McKenna had to say or sign something at every single step, from opening her toy bag to taking turns with Cole to learning how to play with new toys. I was chastised many times for "knowing" what McKenna wants and needs and acting on it without making her speak for it. I had no clue I was doing this so much.

McKenna cried many times during this hour. I realized that I jump at McKenna's every need and can practically read her mind sometimes. I do this so she wont cry and be frustrated. Apparently that is not what I "should" be doing for my daughter. After the session was over McKenna was completely exhausted! She was literally just laying on the hard floor limp.

The enormity of the whole thing hit me. Absolutely everything about acquiring speech we take for granted and with McKenna we can take NOTHING for granted. Everything has to be worked and rehearsed over and over and over. I cried on my way to work. I cried that she'll have to work so hard for something that should just come easily. I cried that she'll have to struggle to talk to her brother and her friends. I cried that she already knows she'd different and it concerns and confuses her.

But I also was relieved and excited.

I'm excited because McKenna worked so hard was so determined and did so well! She is already making progress. We were all so impressed with her work ethic. That girl does not give up. She tries tries tries and tries again. I have always known that McKenna is very strong and feisty. Those attributes will serve her very well.

Love,
Amber