Tuesday, January 22, 2013

The Journey Back To DI

Well, I didn't cry and that is saying a lot!

I had a meeting with Claire's team at school and the behaviorist this morning.  We made a plan in November which has been in place for a little over a month.  Claire was observed again, after "the plan", so we could talk about and compare her data.  Special Ed is all about data.  Long story short, the interventions we came up with really have relieve a lot of the anxiety Claire was feeling in the class room, causing her to act out.  She has more appropriate consequent and rewards   She also has a picture schedule on her desk, and a note book that can travel with her with picture they place on a chart for "first" and "then" (like first circle time then PE).  The note book was very well made and I'm sure Claire loves it because she thrive with this kind of direction at home.  She needs to know what is coming next, that is just who she is.

That's the good news, she is not acting out so much and the interventions are helping without a huge behavior plan and a list of progressively worse consequences. She needed more structure and more brakes and she got them.

The bad news is that although Claire is in a Kindergarten class she is not accessing time with her classmates.  She is using all her energy to sit still when she is in the large group; apparently "she is never listening when the teacher is talking to the large group."  I actually have a little bit of a hard time with this because the times I have volunteered in her class I have see her listen to class instruction however, possibly it was because I was sitting next to her?  This means that all of her learning time is one on one or in small group which is not the bulk of her half day in IK.  Sometimes she engages with the other students in small groups, sometimes she ignores them.  She wants one on one with an adult and fights for it all day long, this is also true of the none school Claire, some of these other issues we don't see so much at home.

Further bad news is that Claire requires a LOT of verbal prompting to stay on task, not a news flash.  This is totally my life with her every days.  She pretty much, eventually does what we are asking but it requires a saintly amount of patience and repletion.

me "Claire, put your socks on."
Claire "Don't want to"
Me "Claire, It's time to get ready, put you socks on"
Claire "No!"
Me "Yes, Mom"
Claire "Yes, Mom!!"

We go through that script about two time for just about everything she does all day long, from going to the bathroom to coming to the dinner table, the girl hate transition.  I feel for them, it's frustrating, but I have developed more of a sense of humor about it over the years.  From my point of view I am grateful that she eventually did the thing we asked because there was a time, not too long ago, when we had to physically, hand over hand, do every little thing with her.

Basically, I have felt, this year, that my daughter is being seen as the "bad kid" and we are collecting data to get her out of here.  We had to ask for someone to come in and make changes and even with improvements in her behavior her teacher really doesn't have too many good things to say about the situation.  I think her teacher and aid and just about done.  She gets written up for EVERYTHING and frequently sent to the principle for things teachers let go or deal with in the classroom for other children.

With all this and much more in mind, it's time to move Claire.  She is exhausted at the end of her half day and first grade is just too big so we were planning on DI (Designed Instruction AKA special ed) with some pull out for things like music and PE for next year.  We are just going to do that now.  It's a little sad but I am hopeful that in a smaller group with more support Claire will be able to engage in things like circle time that she has missed out on this year.   Also I want her to feel like a good girl.  It brakes my heart to see my little girl come home and just about every day confess how she was bad with her head held down in shame.  I'm sick of always being in trouble.

I don't think I could have said, done, felt all these things without Claire's wonderful Preschool teacher Michelle.  Her voice always in the back of my head:  you are a great Mom and you are doing the best you can for Claire, this is not your fault.  When you get that call from the principle or notes home from a teacher it can feel like they are saying, this is your problem, you deal with her.  I used to beet myself up over every phone call and note.  Michelle gave me confidence, and confidence has brought me so much peace.  I can't think of a more helpful gift for the mother of a child with special needs.  Well... Michelle and my husband's support and counseling and some amazing friends and Jesus.

Now we move on to the next chapter, all prayers are greatly appreciated friends.

Thursday, January 17, 2013

The R Word

When friends encouraged me a few years ago to write this blog for Down Syndrome awareness  and my own sanity, I thought, does Down Syndrome really need people to be made aware?  I mean, we all know about this stuff, right?  And then, the vary same day, a friend asked me "I know it's not politically  correct to say retarded, so do they use the word Down Syndrome now?"  I was speechless which, if you know me, happens a lot in this kind of situation.  My friend wasn't trying to be rude, she trusted me and really wanted to know.  

The word retarded is almost always used out of context, that's why we don't know.   Mentally retarded has very long medical definitions, lets just say... 
Mentally less advanced than is usual for one's age.

It's a generalized disorder, which means a lot of disabilities include "mentally retarded" in there definitions including Down Syndrome.  

Now that we got that out of the way, what does retarded really mean?  Forget politically correct, calling someone retarded is crewel.  The last time you heard the R word, what was the person saying? "That's so retard", "He is so retarded!", "It's so retarded..." This is not a medical diagnosis. The R word has acquired a new definition like cool or hot.  What is someone saying when they call a person "a retard"? 

Stupid, less then, undesirable, pathetic, so glad I'm not like you... 

It hurts when people use this word because of all the baggage the word carries.  You are not the man last week who yelled "retard!" out his window driving past the bus stop where a lovely, young girl with down syndrome was waiting, I know that, but it is the same, hurtful word.   

With compassion and understanding I know it's not to slam my daughter each time someone throws out that words but please, please think about it.  It's a bad habit for most of us, that's all.  Lets brake it!  Just because you "don't mean it like that" does not give you a free pass to say it.  Just because I don't mean to use the F word, oops, doesn't mean it's not offensive.  Your parents said it, now you say it.  Lets stop it for our friends, family and children.  Let's stop it for Claire, I know you love her.  They will say what they hear.  Let's teach respect for all people to our impressionable youth.