Tuesday, January 24, 2012

(HELP ME GROW) - January 23, 2012

Addison had her Help Me Grow evaluation yesterday. Adam took the day off work because I was a little apprehensive about being around the table with 7 or 8 different people at once to discuss my daughter's limitations. Even though I knew they were there to help, its so easy to feel defensive, frustrated, or misunderstood when you are the parent and sorting through the emotions of it - not just the nice checklist of whether or not your kid can do one thing or another.  I wanted to expect good things, but after our experience with Early On in Michigan, I was skeptical and kind of jaded on the whole idea that somehow these people would actually care about US as a family, more than they would the red tape of these types of programs, and how they could best help Addison.

I can't say enough great things about everyone. They were sooo kind and patient while we explained how frustrating and 'between the lines' Addison falls on so many things. I always get upset when doctors pick out one strength of hers and makes it seem like it doesn't matter across the board that she's so behind because she has one age-appropriate skill. So one big concern we had, is that with how much she changes from hour to hour, that she would be having a 'good moment' while we were there and that they would write it off or downplay her weaknesses and perhaps not get an accurate picture of what she is actually like. That didn't happen at all, and they were wonderfully honest and I felt they assessed her skills very realistically in regards to how splintered her skills are. It's hard in an hour or two to pick up on some of Addison's weaknesses because she is so darn happy and smiley all the time. And she's very attentive and loves to make people laugh - she is definitely a social butterfly. I think there is this stigma that kids with delays or mental disabilities are 'supposed' to look or act a certain way, and it's simply not true. I can't tell you how often I hear "She doesn't LOOK like she would be delayed..." I hate to tell the world this little secret, but being pretty, or being affectionate, or mischievous - none of that protects you from developing handicaps. The movies like to show developmentally delayed individuals as being extremely obvious - tongues hanging out, drooling, and yes, while some delays do present this way, many many many of the kids we've met in therapy look like NORMAL happy children.

Back to Help Me Grow though - everyone was wonderful and they all went around and offered some encouragement of positive things they saw, and some areas that she could improve in. They did an assessment called a Hawaii Early Learning Profile. Overall, they found her to be in the 7-9 months range in  Self-Help, Fine and Gross Motor Skills, Social Skills, and Learning/Cognitive Development. She tested once again in the 0-3 month range for Receptive and Expressive Language. Our coordinator Leslie was fantastic, coming out to the house and staying in contact with me throughout the process of getting this ball rolling and it was so refreshing to feel like someone actually cared, specifically about Addison and our family.

I feel very positive once again in our decision to move to Ohio. The programs and people we've met have been SO wonderful - and a great source of support to Adam and I. Speaking of Adam, it was wonderful being there together, representing our daughter and talking about her together - everything is easier when you aren't alone in something. I spend so much time alone as her advocate that it always feel amazing to have someone sitting next to you agreeing, telling them what they see too. So it was a great blessing for him to be able to be there with me.

All in all, another wonderful step in a long journey. I am excited to share with you the positive things that come from this!


  1. Read the blog all the time and pray for you guys to find an answer. Me and a friend were talking and were wondering about Rett's syndrome and if she has been tested for that?

  2. I'm so glad today was a positive day for you and thankful that Adam was able to attend with you. You are all such an amazing family! Stay strong in your faith and in each other. Hugs and prayers.