A few days ago a mother made mention that her daughter, who has Down syndrome and Autism is not delayed. Delay would suggest that her child would “catch up” and she won’t. That really stuck with me.
My friend Jen posted a video on her blog with her daughter playing “so big” with her. Her daughter just turned 1 and was responding to her mother’s cue to playing the game. The interesting thing is this..I was cheering and clapping for them and at the same time….my throat swelled up tight and hot tears came to my eyes. I realized that my sweet girl may never do that with me and seeing it live only reinforced how “delayed” Larkin is.
So it’s been ping-pongin around in my head – why call it “delayed” if she isn’t going to catch up? Today was our regular therapy sessions with our Developmental Therapist and Speech Therapist. I posed the question to them. What label do you wear if you are like Larkin? To which the answer is this. If you are developmentally delayed, you follow a certain curve. If you fall below that curve you are Atypically Delayed. Ok – that makes sense. There are two catagories and Larkin falls in the latter. However they were both quick to point out that if Larkin had only Down syndrome she would be on the delayed curve. But when the seizures reared their ugly head – she fell below. One more reason for me to hate them (the seizures that is). I am cool with that as long as I have an explanation. It’s the ping-pong part I struggle with.
Then next item up for bid is when do you make the leap that she is who she is and you relax and enjoy your child and not hope for progress. Well my answer is NEVER. I am relaxed and do enjoy my children but I hope for, and expect, progress from them both. I will all of the days that I take a breath. Progress comes in many different ways and forms. Chase may progress to 8th grade and Larkin may walk before the end of the year. I will be tickled pink and orange with both but if neither happens – hope remains. 🙂
I will continue to cheer and clap for the accomplishments of my friends children. I can’t express enough how much joy watching kids and how their minds and bodies work. My little friend Peanut was over here yesterday morning. I made her waffles and enjoyed watching her. She is so smart and so quick, it gives me such pleasure to be with her. It doesn’t make me compare and be sad – the twinges are there off and on but my mind set is JOY. I enjoy all types and ages of children and adults. But then again, that is an atypical attitude huh?
The book of Larkin is far from finished so I won’t label her. We don’t know what she will do or how, but as long as I have hope and expectations – then all things are possible.
I think that it is very important to keep on trying and hoping, along with loving her for what she is NOW.
(My daughter has DS and ADHD, and is age 13)
I know what you mean about the word delayed. They use this word with my daughter, but it is not appropriate. She’s *disabled*. She is who she is, and a word will not change that, but I’m a bit upset that we were not prepared for what life would be like with a disabled child. When she was 9 days old and told me she’d be “delayed” I thought, “Ok so she’ll walk and talk late”. But they knew then and they know now that she’s likely to *never* walk or talk. They really should be honest with parents. I try to be positive for her sake, but it’s not fair to her if I expect things of her she’s not physically capable of. I realized this on my own and I’m glad I finally did or I’d still be devastated at her lack of development. Instead I’m able to just enjoy her for who she is.
Well, you already know about Kayla. 😉 It’s funny, I think when you admit that you accept your child’s limitations, those who have kids with less severe disabilities think that you’ve given up hope. Not at all. If that were the case I wouldn’t have pushed so hard to get Kayla in the integrated class. But I do accept that she may never talk, and so we adjust for that by using other things like PECS. Our kids will do the best they can, and it’s up to us parents to push them instead of being complacent (which is VERY easy to do!).