I had my first experience with Early Intervention today.  It was good… I guess.  I thought it would be easier to go through this process the second time around, but it is just as difficult.  My heart hurts hearing that the professionals can see in a short, 90 minute visit where my concerns are coming from.

I hurt.  This hurts.  I am trying to be strong and I know that I am, but this is hard. This is painful.

This morning, the county EI worker (who will be our case manager) and a school district representative came out to our house. They interviewed us and went through the initial paperwork.  They also observed A and tried to get him to engage in some age appropriate behaviors.  He did not play appropriately, but they were, as I knew they would be, impressed with his language skills.

A is not feeling well today so they were also able to see his difficulties with coping mechanisms and also some of the stimming behavior that he engages in (head shaking, spinning lids).  They agreed that he seems to have a lot of sensory processing issues, and has many red flags for autism.

My case manager was very up front and before we began she explained that they would score him, but if we felt strongly about taking the next steps with them, we would. We agreed to that and they will call to set it up in about 2-3 weeks.

He scored a 42 today and the cutoff for doing the next step is a 40. They said that even if we did not push to do the next evaluation they would have encouraged us to, based on the behaviors they did see that decreased his score.

One of our more immediate concerns is with A’s eating.  He is very sensitive to texture of food and does not have a very large palette.  He is consistently below the 10% mark for his weight, even though his is just as consistently above the 85% for his height.  Due to my concern, my case manager is also going to put me in touch with a public health nurse to see if they can help me out with his eating. They said the PHN would have good suggestions for us and could help us to monitor his food intake, weight, etc. more closely.

The nice thing, I am finding, about the birth to three program is that the child does not need to qualify under as broad of an umbrella to get services. I am fairly certain that will not matter in our case, but it is nice to know.

During our next evaluation, we will work with a school psychologist, an OT, an ECSE teacher and the case manager. All of the evaluations and therapies will be done in our home. That is such a relief as we will be able to do it when B is at school and not have to upset his routine or day any by having extra people in our home.

I just didn’t think this would be as tough the second time around. I initiated this process.  I am the one making the observations.  I know what I am seeing.  This should not come as a surprise to me.  Our case manager and school district representative are agreeing with me, not pointing out new revelations.

It still hurts though.  My heart is aching and the tears are flowing.  I know they will both be fine and do great in life.  I know that I am providing them the opportunities they need for success.   I just wish it didn’t have to be so difficult for them to get there.

Today I am letting myself hurt.  I am letting myself cry.  Tomorrow though, tomorrow is another day and I am going to try my best to get up and keep fighting.  Fighting to take as much of the pain and frustration that will come to them from this diagnosis away. Fighting to make their world as easy as it can possibly be.


4 Comments (+add yours?)

  1. akbutler
    Sep 21, 2010 @ 14:37:38

    It’s ok to cry, even if this time you know what to expect. It doesn’t get any easier. The fact that you are noticing things makes you an amazing mom. Hang in there.


    • autismisnot
      Sep 21, 2010 @ 14:55:28

      Thanks, Alysia. I guess there was that little part of me that wished the evaluation team would tell me I was crazy or something. In the months since May, I have learned an incredible amount, but my hurt is no less. Yesterday, my hurt multiplied. Just like my heart grew bigger with each child’s birth, my hurt grew bigger with A’s evaluation.


  2. spectrummymummy
    Sep 23, 2010 @ 10:01:27

    Both times I hoped they would call me crazy too- it just isn’t meant to be. Let yourself cry, feel the hurt. Starting EI at this age will be worth it.


  3. Trackback: To Stimm or not to Stimm « Autism is not a Four Letter Word

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