Wednesday, November 9, 2011

Harlie's "talking"

This has to be really quick... but I want to tell you how great Harlie has been doing lately.  She is really trying to talk!  She repeats everything you say.  She even sings the songs to shows on TV!  Her two favorites right now seem to be the song from Cat in the Hat and Wild Kratts.  She mostly hums, but you can totally tell what she's singing, so that counts.  Although with the Cat in the Hat song, she can definitely say "go, go, go" clear as a bell.

I really can't believe how hard she's trying.  And this growth seems to have come so fast.  Who knows where we'll be by summer!!!  I know it's not going to be all smooth sailing.  Her mouth does not make it easy for her, that's for sure.  So far, she really can't seem to be able to lift her tongue to the roof of her mouth or to her top teeth.  And I think that will make it very difficult for others to understand her.

Harlie had a fabulous speech therapy session with her private ST last week.  And my homework this week was to think of some specific words that we want her to learn how to say.  Last week they worked on getting Harlie to touch her lips together.  It really amazes me how many things that normally we don't have to work for - but she has to work hard for every little thing.  Like touching her lips.  Or raising her tongue.  Or breathing through her mouth and nose.

And she never complains.

Tomorrow she has physical and speech therapies after school.  I'm anxious to see what she does.  Last week in PT she worked with the Wii Fit.  That was fun.  I wish I could work in more therapy for her.  Because she actually has fun while working.  And they are so beneficial!

Last year her PT did an evaluation to see where she is physically.  It's very similar to being measured for the growth chart - like your child is in the 50th percentile for weight and 75th for height.  Physically, Harlie is in the 2nd percentile.  And it is extremely obvious at school.  And keep in mind that evaluation was done last year - before her spinal fusion surgery!  So, I'm glad she was cleared by her surgeon to go back to PT.  She has a lot of catching up to do.

We had parent/teacher conferences on Tuesday.  Overall, I think they went pretty well.

Cooper is very active and has a hard time sitting and paying attention during circle time.  I wonder where he gets that from?  Tom.  But, she said that he plays really well with his friends and shares easily and is very kind.  Me.  Socially, he is doing great.  I guess he'll eventually learn to sit still.  Right?  Now if we could only get him potty trained.  He has NO interest in it whatsoever.  And if we manage to get him to sit on the potty, he will only sit for a split second and is done.  So, sitting still is a problem across the board.

Murphy is doing great in school.  And I can't tell you how glad I am for that!  What a difference from last year's experience!!!  His teacher says he's doing great in all areas (except for when he forgets to take his meds, which is really quite obvious).  At least we know that the meds are still the right decision for him.

Harlie's conference was longer, of course.  And on paper, it doesn't look good.  But, that's the way she rolls anyway, I suppose.  She has always looked worse on paper.  And those that have seen her medical records before meeting her in person always comment on how shocked they are that she's doing so great.  And actually, if it happens the other way around, people are equally shocked to hear all she's been through.  So, for right now, I'm not letting it bother me.

So much of her challenge right now is language.  I'll give you some examples.  The other day Cooper said, "Mommy, that is really big!"  And I thought to myself, does Harlie know what "really" means?  And how do you teach that word?  Because no one taught it to Cooper.  See how much learning she missed by not hearing well for the first three years of her life?

But, then the other night, I was brushing Harlie's hair and teeth and getting her ready for bed when she said and signed "purple."  I said, yes, I see purple.  And then she said and pointed to her shirt, "Right here" and I could totally understand her!  And it occurred to me that we haven't taught her the words "right here" - on purpose.  How awesome is that???

So, when they are trying to teach her class that monkey starts with M - does Harlie understand "starts with?"  I asked her teachers that question, and they said they don't know.  That's what makes learning language in her situation so incredibly difficult.

I haven't been able to blog about the details - but I have been really stressed about Harlie's education this year.  It's been weighing on me more than I expected.  But, I have to say that I am now more hopeful than I have been since school started.  Hearing her "talking" has been incredibly wonderful.  On so many levels!

Okay, this has been way longer than I intended.  Ugh!  And I still have so much more to tell you!

More later!
~Christy

2 comments:

Lisa B said...

But this is typical Harlie. She does things in her own time and her own way. I think she enjoys surprising you.

Seriously, she's doing fantastic. And so are you.

Susan said...

That's so exciting! I'm a little jealous, I admit. I think you're already finding that she's picked up on more words that you realize. And the more verbal she becomes, the easier it will be to tell what to work on.

Ainsley too looks bad on paper. Boy do I know what you mean about all of that. And too people are shocked when they hear what she's been through. I guess it just shows that the person is what is important, not the diagnosis. And I KNOW Harlie is an amazing kid, with an amazing family and so she is going to be just fine despite the ways she'll have to work harder.

Remember how worried you were her first year? And how that compares to how she is doing now? If you could tell yourself then what things would be like now, you'd have been less worried, right? Have faith that the same will be true 5, and 10 years from now. It won't be perfect but it will be good. Much love and hugs!