This is What It's All About

I recently found my way to a blog called Finding Ninee. I forget just how I found my way there, but after years of dealing with the term "developmental delay" I was happy and relieved to find another family in a situation very similar to ours. Kristi recently created a link-love feature on her blog where families like us can connect and share. That's what this post is about. If you found your way here from her page, welcome!

Our daughter is six and has just recently been diagnosed as having a cognitive delay. The day we received this news we were ecstatic. Not autism! Hooray! Then, as the hours passed, I found myself thinking, now what?

It's no secret that I never wanted Patty to be diagnosed with autism. I never believed autism was the right fit for her. Now, after receiving her DD diagnosis I find the biggest frustration I have is making people understand that she is not autistic. Although similar in many ways, autism and developmental delay are not the same thing. NOT THE SAME THING! And call me crazy, but I don't want my daughter misidentified by the autism label.

Before Patty started school, the developmental delay itself didn't matter. In those days she was just my little Patty. We lived in our own little bubble and the opinions of other people just didn't matter to us. The opinions of others matter very little to me now, too, but I find that those people with opinions are wonderful sources of information. And those knowledgeable people are the ones you should be turning to with all of your questions.

Patty is now a kindergarten student in special education with a category of developmental delay. And I find myself wondering if we're doing enough to help her become a successful adult. I don't know about you, but I never thought I'd have to worry that my child might grow up and be unable to care for herself. It's terrifying. And, no it's not encouraging to hear that she may "close the gap" without knowing just how big that gap is. I guess a lot of families deal with the unknown, but that doesn't necessarily make it easier to accept.

So, I guess, at the end of the day, the diagnosis by itself really didn't amount to a hill of beans. I like how I Can Say Mama put it on her blog: developmental delay means nothing and everything. Plus, she has a great perspective. Once you have the diagnosis, it really is up to you to figure out what to do with it. Patty began private Speech and Occupational Therapy this summer and we've been able to see the positive impact it's making. Plus, the special education services in school have made a huge difference, too. But, I constantly worry that we should be doing more. Do you feel that way too? What are you doing to help your DD child?

How ever you found your way to this blog, I hope you find some information that helps or encourages you. And I am always available by email at meetthecottons@gmail.com