Evaluation Day

If anyone reading this has a child with Down Syndrome you know what Early Intervention (EI) is.  For those of you who don’t (because I didn’t), it is a support and educational system for very young children who have developmental delays in one or many areas. There are therapists that come to your home, or daycare and help your toddler achieve the goals you have set for them as a parent such as walking, eating, writing or talking.

Grayson has received EI from the time he was two weeks old. For his first year, he received physical therapy twice a month. Once he turned one, we added speech therapy,  more physical therapy,  occupational therapy, and developmental therapy.

I love all of Grayson’s therapists, but I have to admit, I hate the evaluations. They give me SO much anxiety.  If you notice, he wasn’t receiving much therapy at all his first year. But after his one-year evaluation, he was so delayed, they needed to add all the additional therapy. That evaluation was really hard for me, and I was upset for days. Grayson went from having therapy twice a month, to having therapy ten times a month. That evaluation just screamed at me “the child you thought was so perfect is in fact not. And not only is he NOT perfect, but he is also seriously flawed. And YOU, mom, are as clueless of a mother as they come”.  That’s exactly how I felt. Dumb and clueless. I was not fit to be Grayson’s mom. I felt guilty for not knowing answers to questions about what he could do. I felt guilty for not knowing he should be doing certain things, what milestones he should be achieving, and where he was lacking. It’s not like I didn’t have the “milestone chart” (I hate that thing). Some things I never had to think about with Blake and AJ like I did with Grayson. For example “if you throw his toy, will he go get it” or “if you walk in the room will his eyes follow you” or “can he stack more than three blocks without them falling?” Each question I couldn’t answer, I realized, was because I never saw him do it. Soon I started compensating for every answer of “no”, with “but he can do this….”.

I felt like Grayson was perfect, and every week he was growing and hitting new milestones and achieving more. To me, he felt completely “normal” (I’m still trying to find the right word to use, so for now it will still be “normal”). His evaluations, however, remind me that he is delayed, which translates to  “different” or “not good enough”, which really triggers something in me.  Why does this bother me so much? Grayson is a super happy and content baby. So I couldn’t be upset for him if I am real with myself.  My insecurities as a woman were crossing the line into motherhood and my ability to be a parent. Why did I need my kids to be “perfect”.  I’m sure any  knee jerk reaction as a parent is “well who doesn’t want their kid to be perfect?” But I’m learning to get to the root of that. Do I need them to be a certain way because it benefits them? Or do I need it for me? Yes, hitting his milestones on target could benefit him, but he doesn’t care if he can stack blocks properly by six months of age, or 12 months. It was ME who cared more than I should. And being a mom of a child who will almost always have some developmental delays, this is something I was going to have to figure out and figure out fast.

His two-year evaluation was coming up, and I was rehearsing things in my mind over and over again, dreading it more as the days went by.  But something finally clicked in my head this time. It’s like I had my “ah ha Oprah moment”.  I began to realize that these evaluations were not meant to give me anxiety, or judge my child, and they surely were not about me. Rather they were about receiving information. Information on where my child was, and where he needed to be. Because like it or not he was going to have to start school and start performing in the real world. He couldn’t just sit on my floor and play with toys for the rest of his life. So I began to slowly change my expectation about his evaluation, to a mindset that I was going to be receiving information that would help him. It was a time for setting goals and giving me direction on where he should be. Kind of like “ vision planning”. I felt more relieved with this new perspective and had less anxiety about his next upcoming evaluation.

And guess what? He rocked his two-year evaluation!!  Grayson did SO well I couldn’t believe it. I had no idea he could do so much and knew so much!! His only delay was his gross motor skills and that’s because he isn’t walking yet (which I believe is because he is afraid of falling) and he refuses to eat solid food.

The therapist at the end of the session said to me “this kid is going to college! “

Boy that thrilled my soul. And you know what I realized? If he had not had such a bad evaluation last year, we would not have added all the extra therapy and sessions, and he would NOT be where he is right now. Those therapists have helped guide Grayson and me,  and have helped steer him in the way he needed to go.

I’m STILL  learning as a mom, parent, and mother of a child with Down Syndrome that not everything has to turn out the way you think it should. Sometimes bad outcomes simply show you where you are, where you need to focus your attention, and what your next steps are. If I can get out of Grayson’s way, shoot ALL my kid’s way, and learn to just roll with this new normal,  things will work out just fine!

What about you? Was there a time you were in a similar situation? Did you feel insecure and defensive like I did? Have you ever stopped to think about why? Leave a comment if so.

My kids with two of Grayson’s therapists