As a mother of a child with special needs, we do celebrate when Hailey does something new. It's different than the "my child was reading at 4" or "my child was potty-trained at 18 months". This is pure celebration because I've watched her struggle, I've watched her fight to overcome obstacles to achieve a particular goal. We celebrate little things that most people wouldn't understand. Hailey climbed on the couch yesterday. Do I dislike that we will now have to take her off the couch 100 times a day? Yes, but I am so happy that she had the strength to climb and she had the motivation to do it. Hailey loves the inside of my cabinets. I told her physical therapist today that she stands at the cabinets and opens the doors. Does this sound like something most people brag about? Nope, but with Hailey it means she is getting stronger. She is standing with only one hand supporting her and she is reaching and moving her other arm and her body. It means a lot of work for mom (cleaning up her messes), but it means that the work we are doing is paying off.
I'm always happy to rattle off the things that Hailey can do, but I'm quite frank with what she cannot do. The girl cannot and will not drink out of a straw (did you hear that Hailey - maybe it will make her want to since I've told the world she can't). I hope I can get my point across here. Sometimes to the outside world, I feel like I "need" to tell them the list of things she "can" do. I feel like that is what people want to hear. As if, I have to show her value by the things she can do that other toddlers her age are doing. Why? Does it make me a bad parent because I do not have the patience to work on the straw with her anymore? Am I not working with her enough if she isn't making animal sounds? Why as parents are we judged by what our children can and cannot do? Is Hailey less of an individual because she isn't walking? Will you not acknowledge her because of it?
I'm not sure how to combat it. Do I just give up or do I list all the things she "can" do? What do you think? How do we make people realize all people have the same value regardless of their abilities?
|I can't get her to smile anymore with her eyes open!|