Tuesday, 26 November 2013

Back In The Saddle

Where have I been?  This is the longest, by far, that I have gone without blogging since I started nearly two years ago.  I have started many entries in my head and just ended up with nahhhh…..

I’ve been really tired, my migraines have been rough.  The kiddos’ schedules are out of control much of the time and keeping up with them is taking all of my energy.  After Nate’s IEP meeting I was kind of in a funk.  Thrilled for all of the positive changes, but well aware that we have stepped things up with him many times with little to no results.  I don’t know how it happened, but somewhere along the way, I have become the cynic when it comes to Nate.  It’s not so much that I don’t believe he will improve; it’s more that I am too scared to hope.  Every single time he does something new, I allow myself to get excited and then kind of pull back- will this last?  Will he ever do it again?  Will he lose this skill in two weeks?  It’s scary, there’s just not another word to describe it.

He is still clapping and he is still kissing me- and daddy, and Grammy!!  He is stomping his feet, tapping a table, interchanging those with clapping and getting the correct one something like 8 out of 10 times.  He is back to enunciating toast, juice, he said window last weekend (not again yet).  He is ornery as all get out, and this is definitely a positive. 

All of the therapists are coming around to that way of thinking now that they are seeing some progress- that his irritability is more of an “awakening” than a behavioral problem.  We have implemented very strict ways of dealing with it- if he tries to hit out of frustration we grab his hand, put it to his side and say “no” firmly (I know, rocket science).  The funny part is that he has totally gotten that- and now he will reach out like he is going to hit and after one tap or even before, he segues right into clapping.  Like, “oh wait, this is what I really meant to do”.  It works for me, when he reminds himself not to hit, I do feel like clapping for him!

We had our one month follow up at NIH last Friday- he has been on Aricept for 4 weeks now.  He impressed the pants off of the research coordinator- he said “cook” for cookie, and I said “you want cookie” (standard procedure to repeat a million times), I pulled a cookie out and he said “no, juice”.  He has never done this before.  Normally he would scream and hit out at the cookie.  This is a huge improvement in communication, not to mention that he did it in the presence of strangers, when he usually holds back in unfamiliar situations. He said “fish” when we were looking at the aquarium in the waiting room; he clapped for them and gave me kisses.  They are in love with him- they have left no doubt in my mindJ.  And I LOVE NIH.  They are just fantastic there.

As I said earlier, we also had his IEP two weeks ago and implemented a bunch of changes.  So now we are back to- why is he improving?  I actually have a tendency to believe that the medication is responsible for the changes- as I said earlier, we have been intervening like maniacs since Nate was younger than two and his progress has been slow, as in snail-like.  Yesterday I had a parent- teacher conference and his teacher said that in the last two weeks, she would have to change that description to “good progress”.  AKA, he is having a steep upward trajectory at the moment.  I just don’t think it’s a coincidence.  He is using PECS (physical ones, not on the computer) to make choices in the classroom, both play and food based.  He is participating in the routines.  Apparently in the past he would hide in his cubby and try to break into his lunch bag.  Both hilarious and sad at the same time.  His sleep has evened out for the most part; he is sleeping in his own bed again….

I don’t want to talk about it too much though.  I am afraid.  Wimpy mommy.  I want this to continue so badly but I am so stinking afraid that in some ways I can’t enjoy what’s happening right in front of my eyes.  Deep breaths…..we have to appreciate the here and now right?


  1. twitter: LisasLeben26 November 2013 at 09:31

    It is completely "normal" to be afraid (using your own blog title against you - I couldn't resist!)
    You are seeing some positive signs, and it's great that at the moment he's taking baby steps at self-control. But know, that just as with any typically developing child, there will be a few steps forward and a few steps back.
    In my experience with my daughter, who will be 11 next month, she always experiences some regression and confusing behavior before making some developmental leap. So his behavior may get worse before it gets better.
    But I completely "get" the fear, the frustration, and feeling cynical as a way to protect yourself.
    I guess I'm writing just to remind you that you're not alone.

  2. That sounds like good progress! Sophie is like this too- her skills ebb and flow, appear and fade... I'm also always tentative, cautiously optimistic. One day at a time :)

    1. I am coming around to PECS, sucking it up and realizing that I would much rather he be able to tell me what he wants, even if the verbal language hasn't come yet. when he picks the picture I am just delighted!

  3. Nice to see your posts again!. Always great shares and information. Best of luck always.