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Rett’s yearly speech eval

March 6, 2014

PIC39

 

To say that I have been avoiding the blog so that I didn’t have to post this is a bit of an understatement.  Rett had his yearly eval in January. Its March. Yah.

 

I never deal well with his yearly speech eval. It seems to be our grade report for the last year. And though I realize you can’t encompass everything within that little test, it means a lot to me.  It somehow has the power to either confirm we are doing the right thing or slap me in the face that we are making the wrong choices for him. And he isn’t doing as well as he could/we hoped.

 

Somehow I totally embraced denial because I spent the last year thinking we were like a year behind and when I looked up his last year eval, we were closer to 18 months. Once I figured that out, his eval for this year didn’t freak me out quite so much.

 

Rett made basically 10 months of progress in one year. Which yes, that does mean we are falling even further behind vs catching up which was our goal all along but the testing and concepts are getting a lot more difficult.  And autism isn’t going away. I have to come to the realization that no matter how badly I want to ‘save’ him from autism,  I can’t throw enough therapy, time, money, effort at it and make it go away.  He may not catch up for many, many more years.  Giving up on my hope of having him caught up by 5-7 is heart breaking and its hard to balance finding peace with feeling like you are giving up on your child.

At 5 years and 1 month, Rett is speaking at 3 years, 5 months.  He has maintained most of his percentages from last year.  His speech therapist did agree that his testing was probably a tad on the low side because he has been in a regression (more on that later) and also there are times where he has to answer something correctly 4 times, if he answers it 3 times, he gets 0 credit.  So some things he hasn’t mastered but he is definitely progressing on.

 

The good news is, Rett’s pronunciation of words has been progressing naturally without any therapy help along with his language. That is not to say that he is behind but that it is on track with his communication delay and as long as it stays that way, it will not be included in his therapy.   He actually went up 4 percentile points in that area compared to his peer group so one thing we don’t have to worry about that he is naturally developing. That’s always a great thing.

He is becoming a lot more intelligible and his spontaneous speech (well before regression) is amazing compared to last year at this time.  He is asking questions and making commentary.  During the testing he was making a lot of on topic commentary, even if he couldn’t answer the question quite right.  There is still a lot more going on his brain than he can get out of his mouth.  Which is frustrating for me.  And very inspiring to watch him try.

 

I sat down with Miss Amanda to discuss results and what that meant to her.  She told me that even though we sit there and think how horrible it is that everyday Rett wakes up and language is so hard and a constant lesson.  Constantly being instructed to use different words or not being able to find language to express himself.  But to Rett, this is his normal.  And you can only hope that in some way, it makes him a better, more resilient person to have struggled and overcome such a mountain.

No one can tell me 100% that doing x or doing y or flying to the moon would miraculously ‘fix’ Rett’s speech delay.  Right now he gets 3 hours of speech a week at a private therapy clinic, attends 2 hours of social skills every other weekend and I do mini speech sessions on the topics we are going over about every other day and constantly model correct language/give him language throughout the day.  She does think that he is a good candidate to go to school because he is social, he does learn things within the environment (ok she and I may have a minor disagreement on that one) and his interests are at age level making him a likeable person.

 

I spoke with a lot of friends on this topic during my confusion.  I have followed my heart and that little voice that tells me what to do for Rett across the country and the trust I put in it has served him well.  So I don’t understand how when I feel so at peace with home schooling (most of the time) that it can be the incorrect choice. And during my time of confusion I had LOTS of people telling me to send him to school.  And I think this is how it works.  I am not saying those people meant anything bad, I completely trust that they think that is best for Rett. But people also thought it was best to stay in Oklahoma where I had almost constant family support from my mom.  And though I miss her bunches, Rett’s year of ABA and the amount of quality help and support I can get here from other parents can’t be replaced.  We are planning on moving in fall of 2014.  My plan is to try home schooling, REAL home schooling with groups and co ops and how I always wanted to and see how he does.  We were always planning in the back of our minds to start him a year late in kindergarten anyway.

 

It will be a hard decision no matter what.  But I have to keep my heart and mind set on what the goal is. For Rett to feel comfortable in his own skin, for accommodations to be made so that he can find success with learning and for him to find his interests and strengths that lead him to having a happy, fulfilled life.  We will see what road leads us to that.  It doesn’t have to be the easiest one.

 

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3 Comments leave one →
  1. March 6, 2014 3:23 pm

    Laura I think you are doing a great job and you are a wonderful mother!

  2. Stephanie Guthrie permalink
    March 6, 2014 3:34 pm

    You’re doing great, Laura.

  3. March 7, 2014 2:05 am

    You are an awesome Mom, and one I very much look up to and aspire to be like. You are doing a fantastic job advocating for all of your children!

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