Life On The B Side

Taking all that life throws at us one moment at a time

Changing December 6, 2012

There’s nowhere that I wouldn’t follow
There’s nothing that I won’t do for your kiss
I love you like there’s no tomorrow
Cause nothing ever felt like this

See the times are changing
And I’m sure of nothing that I know
Except this is us, and this is love, and this is where I’m home

-Emeli Sande-

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I spend a lot of time talking about my son and his speech (or lack thereof) issues.  Communication has been and is our single biggest obstacle where his autism is concerned.  So here I go again.

CC takes Jay to one of his (3 different) weekly speech therapies.  They go every Wednesday afternoon and have done so for almost two years.  I’ve often felt like I want to be and should be the one who takes him.  I hate missing out on anything that he does.  After December 19th, 2012 they will not go anymore.

It is for a good reason and it makes my insides all topsy turvy with all kinds of topsy turvy feelings.

The therapist (at that facility) thinks Jay can “graduate” at the end of this year.  She thinks he no longer needs them and she thinks that the therapy time I fought for and cried about and pestered them to get would better suit another child.  She says that every week that he comes there, she is amazed at how much better he is than the previous week.  In her words, he has reached their limit of expertise.  She has given him all the tools she has and she is confident that he will take them and run without her help.

(P.S.  He will still get speech therapy in school and at one other place)

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I am happy and confused and slightly overwhelmed.  I am scared that he will regress.  I am feeling guilty that I didn’t share this part of his life with him and now it’s coming to an end.  How did it happen to fast without me noticing?  I am anxious about him getting older and about him finding his way in the world and about me missing out on other things.  I am hopeful that the next child on the waiting list will benefit from their services – as we have.

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We are not out of the woods by any means.  Jay still has a lot of things to learn.  His pronunciation is not clear.  He sounds quite robotic when he speaks.  He will only give appropriate answers to questions in the present.  Questions like “Are you ok?”  or “Where is your hat?” or “Do you want (whatever)?

I do ask him things like “Did you have a good day at school?” or if I hear him crying I will ask “What happened?

He answers “No” to those types of questions every time so I don’t think he really understands what I’m asking.

His school speech therapist has told me that she is very focused on working with him on tenses and pronouns.

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I was totally shocked and in disbelief when CC dropped the bomb about Jay not continuing with that one speech therapy.  There’s no way I thought.  There’s no way he is ready to leave there.  There’s got to be some other explanation for why they won’t keep up the service.  He clearly still needs a lot of help.

Then I remembered about a month ago, just as we had parked the car, I held the door open for Jay and let him know it was time to exit. He hands me his toys to put in a bag I was carrying.  Then he said:

Wait.  There is more.

I asked him if he had another toy in the car somewhere and what it was.

Yes.  The elephant.  Where is it ?”  was his reply.

I told him that I would wait as he looked for it.

He said (to himself), “Turn on the light.”  Then he turned it on and fumbled around in his seat.  He produced the toy and happily said “Here it is.  Now go.”

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I was stunned.  I’m so not used to these conversations with my son.  It stops me in my tracks every time.

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I can’t remember what we were having for dinner two nights ago but I know it was something that Jay does not eat.  I am not proud to say that even though Jay was right there in the room, I asked CC what Jay was going to eat.  CC turns to Jay and says “Jay, what are you going to eat?  Would you like cereal?  Or noodles?  Or bread?

I expected to hear a string of no’s to all the suggestions but no real answer to the question.  What I heard was:

No.  I want eggs.”

CC asks him if he is sure he is going to eat them and he assures him that yes he will.

CC scrambled 2 eggs and my Jay sat at the table and fed himself dinner.  When his bowl was almost empty he looks at CC and with a questioning lilt says “All done?”  With those words and the look on his face and his body language he seemed to be asking permission to leave the table.  There was still a little bit of eggs left so CC said “One more and then you’re done.”  Jay took one more mouthful and then got up and went about his business.

It was so easy.

When did this happen?  When did we get here?

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I forget – quite often – that this Jay is not the same Jay I had last year.  He’s not the same child who I first took to the center for special needs children.  The same child who two years ago when the doctor handed me a sheet of paper and asked me to circle the word that he knows I could only circle 7 of them.  With the 7, I was being generous; 5 would have probably have been more accurate.

No … He is not the same child.  Not even close.  He is changing and growing and learning every day, right before my eyes if I would just open them and see it.

I don’t know how it happened so fast without me noticing it but I am filled with warm gooey hopefulness about what’s coming next, as we close the book on this chapter in our lives.

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(Note: The formatting on my computer is acting a little funky today so if this post looks odd I apologize)

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5 Responses to “Changing”

  1. Lisa Says:

    I understand the apprehension….. but how many kinds of awesome is it that Jay has progressed so much?! Relish this success!! He has worked hard to get here!!

  2. solodialogue Says:

    I absolutely love this post! To me, for the year or so that I’ve been following you, this is such a tremendous amount of progress in such a short time. I am amazed by the conversations that he is having with you. With my son, he has speech but a great deal of it is echolalia and not “conversational” like Jay. What a great program you are part of!! Yay Jay!!

    • Thank you for sharing in the joy with me … His speech is very robotic sounding and is pretty much limited to him expressing to us what he wants but I love it. It really does make life a lot easier. Before he had words, he would just cry and scream.

  3. Neil N Says:

    Yes, yes, yes! So happy for you guys — but I also get the apprehension. We have gone into so many IEP meetings both hoping certain services would be discontinued but fearing the same result. It is a natural reaction. Big picture, though, this is great.


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