It has been pretty silent here on the blog, and mostly because we have been busy. We are all over the place, all the time. (I'll be doing updates a lot next week since we will be down at the Mayo Aerodigestive Clinic!)
This week, we are doing our regular routine, which consists of ALOT of therapy. We go to therapy, therapy comes to us, we practice his exercises. We are constantly working on different things.
And Easton is AMAZING! He makes incredible strides every single day.
It is one of the reasons I love going to his therapy and seeing all his therapists- they help him so much.
They other reason I love going to these appointments and having them come to our home, is the talks I have with his therapists. Simply because, they get it.
They understand Easton.
They can talk medicine, but also more than that. They see Easton for who he is, but also what he can be. His potential, but also his limitations. They can be realistic about Easton's conditions without giving him barriers.
The fact is, Easton IS delayed.
He has developmental delays.
He has physical delays.
He has speech delays.
Saying these facts are not bad things. DELAY is not a dirty word. By saying these, it does not limit his potential. It describes where he is now, not where he will go or where he has been.
Yet, many times when I talk to people about this, about WHY we do all this therapy, I find myself having to reassure others. During these conversations, the underlying assumption I hear is that Easton doesn't "look" delayed or disabled, so he must be fine. .
"Oh he is doing so good though!"
"But he can do (insert literally anything)"
"Oh so and so couldn't do that at his age"
….or my personal favorite...
"He will get there in his own time"
I hear all of these SO often. I understand what people are trying to say. It is not a bad thing to say these things, but they aren't helpful and often aren't true.
Statements like these really take away from the hard work we do on a daily basis. They silence a parent's concern. But more importantly, they really belittle valid diagnoses and reinforce a stigma that it is not okay for a child to have delays. This stigma keeps parents from going to therapies and getting the help their child needs, let alone talk to others about it and seeking support.
When you say things like this, I have to comfort you. I have to tell you its okay. I have to help YOU cope with OUR struggle/diagnosis/delays. Or I have to be the negative person who says you are wrong, which is no fun.
Don't worry, I have said all of these before and still catch myself saying them now.
Yes, having delays means you are behind and need some help. It may be something you can work really hard and get rid of. It may be something you live with forever.
It is just another medical diagnosis that you will learn to live with, recoverable or not.
Which is why I love talking to our therapists.
Just the other day, we were at PT and working on an exercise that Easton is terrible at. We practice and practice and he is not getting better. It is one of his only goal areas he has never made progress in.
I found myself saying one of those, "he will get there eventually" statements. Our therapist brought me back to reality. She said that yes, he might get there. Things might start clicking finally. But... they might not. Actually, at this point they probably won't. And if they do, he probably will never be 100% in that area. But he would live. He would compensate and still thrive. Just because he wasn't getting that one thing, it doesn't change who he is or what he will be.
And at first, when I was driving home from that and thinking, I was sad. I was thinking of what he couldn't do and how he was working hard and it wasn't clicking. I was thinking how sad it was that he might never get it. I was definitely having a little pity party.
BUT, the more I thought about it, the less sad I was. It actually became quite empowering.
I was able to more fully accept his delays and realize it was something he had, not who he was.
So, before you jump on "he will get there" bandwagon, think about WHY you are saying that. Think about what you are actually saying.
Instead, try encouraging the hard work they are putting in during therapy. Focus on the fact that a delay doesn't change WHO they are. Ask about what they are doing to work on that delay.
Having a delay isn't okay, but it will be okay!
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