The Best Kind of Advocacy is Self-Advocacy

I want to be that voice that always ensures that Mikey is treated fairly.  Some nights I cry myself to sleep as I think of all the hurdles and struggles that he may have to face in years to come to ensure that others will value, respect and accept him as he is.  I love him exactly the way he is and would never change a single thing about him but it still sometimes reduces to me to fear to realize that not everyone in the world will be able to see beyond his "Down syndrome".  I get to worrying about the times when I am not there to stand up for him or to champion his cause...

And then a moment in time... a flash of awareness... and once again I'm reminded that it is not I alone that is watching out for this little boy.

On Mondays and Fridays Mikey goes to the Grade 1 classroom in the hopes of getting him used to the routines there so that next year the transition will not be such a big jump for him.  Its a great theory but has not been without its bumps along the way.  Mikey finds it hard at times to jump between the expectations of the different classrooms and is also very much a 6-year old boy who cannot (and sometimes WILL NOT) sit still!  Over all though it has been a wonderful move.

When I picked him up today the grade 1 teacher informed me that Mikey had been none to pleased with her this morning and he let her know in no uncertain terms.  They do a different sight word every day in the grade 1 classroom and when they do the word every child gets that word to put in their bag that travels back and forth with them each day so that words can be practiced in the evening with parents.  Today's word was "them".  Mikey does not have a lot of verbal words that he can say clearly and therefore relies on signing a lot.  As a result it seems that over time a lot of his vocabulary is nouns with a few other words that he uses regularly (wait, please, sit, stand, more..etc.) but he really hasn't used words like "them" very often.  The teacher decided to give him the word "wait" which they had done a couple days earlier in the week on a day that Mikey wasn't there.  She figured it is a word that he knows and that it would be a more useful one for us to use. 

Well!  My young Prince noticed immediately that his word was not the same as the others and he stopped her then and there and tried to give the word back to the teacher and started babbling in Mikey-eese and pointing to the word card that all the other students had.  The teacher handed him the word again and he realized that she wasn't going to get it until he threw himself a good old temper tantrum.  So onto the floor he went kicking and screaming.  The teacher couldn't believe it and wasn't completely sure what it was about at that point.  At this point she grabbed the extra word "them" that she had and handed it to him and sure enough in an instant he was standing up smiling and signing "thank-you".

Now I need to go look me up the sign for "them" so that we can read the dang card when he pulls them out tomorrow and wants to play with them!  LOL

Lesson learned again... perhaps I really am not the one who is going to be fighting for him to be valued and included.  I'm kind of thinking that he might have a handle on that end of things!

Have I mentioned lately how much he melts my heart?

Comments

[lisabazillionkds]

Mon,
I know those feelings all too well :) And then..I am always reminded (again and again), how he is going to be OK...By God, by circumstances ,and by a very dear friend that I know ;) Mikey is such an amazing little boy..I really think he's going to warm most hearts that come into contact with him..and for those hard-hearted ones..I kinda think Mikey will be thinking "well F them..cause I got better things to do ;)"

HUGS
Lisa

[Monica]

LOL Lisa... I don't know where he would possibly get that kind of attitude from ;). LOL LOL LOL

[lisabazillionkds]

Oh no...I cannot imagine ;)
From his Auntie Lisa..I think..;)