Susan's Blog

Monday, September 8, 2008

Tangled Up in New

I have been able to untangle some of my sadness. I think that it is impossible for me not to project some of my own imaginings and feelings onto Nat, who does not tell me a whole lot about his state of mind. I have always had to feel and to guess, and also to ask and to listen.

So I think that I am sad about Nat being gone and about not seeing him daily. It is still so new. I am sad because I just plain old miss him. I’m sad that he is going through a transition and probably does not understand a lot of it. I am sad because I had not been hearing from him or about him as much as I needed and wanted to.

So Ned and I figured out a strategy. We need more daily communication. We need email lists of what and how Nat has been doing, both emotionally and regarding his IEP. We need to know that he is getting consistent, thorough care. And he is, but I want the specifics. I may be micromanaging, so sue me.

This morning I emailed the staff with a list of specifics, what I wanted and what I did not want. Ned talked to the House director last night, with much of the same. I talked to Nat’s teacher today and vented for a long time. She let me cry and whine and she listened better than a therapist. She also had a lot of information for me, such as how the Houses work and how to improve communication between Houses and the families. She totally gets Nat, and she is just an incredible human being, God bless her, and thank God she chose this field.

So Natty Darling called me tonight, saying, “Hi who’s this?” which is kind of how he’s learned how to talk on the phone.

“Hi Darling! It’s Mommy!”

Then he gave me a whole list of what he did today, school and House, down to helping make dinner and vacuuming. He just always always does what he can. And I told him that he was coming home for Friday night and starting his favorite social group, the one with the local kids, and on Sunday: Red Sox game with his other social group!

And so, tonight, after taking in all of your thoughts and love, and lying with my head in Ned’s lap, talking to Mom, Dad, and Laura, kissing Max’s hair and helping Ben think of a Halloween costume, and then taking Lisa’s advice and having a lot of chocolate, I am feeling pretty good, my hope and my fat belly safely restored.


I really believe that if children were provided high quality intervention early on many parents wouldn’t be going through the sadness that you are going through now. I truly believe that.

The majority of what is provided to kids in early intervention well into their grade school years is watered down, low quality ABA. The few kids who I have seen that have received supervision by some of the best in the nation do extremely well. Outcome is so dependent on quality of intervention, that is a fact, and quality just seems to exist less and less in the ABA industry.

In consulting with some of the best minds in the ABA industry (none from Mass. trust me!!) they continually tell me that parents do not really understand what high quality ABA is. The stories I hear from parents, even in the supposed “best centers” are just sad. Untrained therapists (yet parents believe they are trained), kids still not toilet trained at eight years old yet the priority of the center is to take them swimming every afternoon rather than work on this, supervision of therapists by very poorly trained people, programming being run incorrectly and the therapist is clueless to this, but when the parent points this out they get a verbal lashing from supervision, and the list goes on. I say to parents, get your child HIGH quality intervention early on and keep pushing for the best in the industry to work with your child. Become very well trained yourself and understand every aspect of good intervention. Unfortunately, once a child is in a center, parents have little control over training and supervision and what they are told and what their child gets daily can be two different things. I hear it from parents all the time. Kids can do very well and parents need to demand the best early on.

— added by Anonymous on Tuesday, September 9, 2008 at 11:17 am

Hooray for all of you! When your life is geared to accept a certain level of stress, like detonating bombs for example, and that stress subsides, well hell, one could only expect that void to make one feel restless and anxious. I bet you still check to see if your neighbor’s outdoor light is on, and that’s okay. Ned’s right, 6 weeks is not long enough to accept all these changes.

Chill. breathe. chocolate, dance, bevie. Repeat as needed, gut be damned. Lisa

PS: Jared is writing words from memory!! Last night he scribbled “scooy doo wher are you” with his tub crayons! Holy literacy, Batman!!!

— added by Anonymous on Tuesday, September 9, 2008 at 11:46 am

I’m so glad you’re feeling better. It sounds like you and Ned came up with a very good strategy to improve communication. Good for you for taking that sadness and doing something positive to help.

— added by Julie on Tuesday, September 9, 2008 at 1:09 pm

Been there and done that. Trust me the sadness will not go away for a long time, but eventually you will be glad you did what is best for Natty when you see all of the progress he is going to make

— added by Anonymous on Tuesday, September 9, 2008 at 5:05 pm

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