Wednesday, 22 October 2014

Down syndrome awareness ... and beyond (5)

As she has done for some years, Angela Lombardo, Down Syndrome Program Coordinator, Boston Children's Hospital, is posting each day for Down Syndrome Awareness Month on the program's Facebook page - her personal reflections will resonate with families everywhere. This selection is reprinted with her generous permission: 

DS Awareness Month Post #18/19:
Honestly, I have nothing. Some days I don't even think about DS. This word isn't on the tip of my tongue at all times. I am not "dealing" with it 24/7. I am raising my son. I don't forget but it's not on my radar all the time. I didn't wake up today thinking "I will take my son with DS to the mall today". 
This label "DS" plays a huge role in our world. My son has it. I work in a DS program and say this word countless times each week. It doesn't leave my tongue at work but when I am not at work and home and just LIVING it's not the main focus. When he was little, it was. It's all the doctors wanted to talk about. It's what everyone focused on. "He has DS, so...." "Because he has DS, we need to...." Maybe since it was so new to me, it felt like it was always in the front of the line. 
As time goes on, it sort of lost the "need" to be said so much. It doesn't go away, he still has it. Living day to day though, it's not a focus it's more of an understanding. We do things differently DUE to the fact he has DS. We adapt, we accommodate, we bend/twist things as needed but it just goes without saying why. It's just living. It's my knowing what Isaiah needs and meeting those needs. It's less on the label and more on the kid who has it. 
I guess my thought today for DS Awareness Month would be .. yes, I am aware and families are aware but it's not always the main focus...the child is. I look at this picture of us and see my son not just a label.

DS Awareness Month Post #16: 
Does your neck hurt from all the hats you have to wear sometimes on your head? How on earth can we do it all? 
I remember when Isaiah was young and I would just shake my head and say forget it, you are not getting any floor time today! He hated floor time so he would get grumpy and then I would get grumpy and neither of us benefited from his laying on his belly. I felt guilty then would lie to the EI PT who asked if we got our floor time in. Of course, we did ... how could I tell her no way? I was worried I'd be judged. What kind of mother am I if I can't deal with some exercises and his cranky ways? I remember skipping Speech so I could take him to the zoo. I justified it easily since we talked about animals. 
We had so many appointments between doctors and therapists. I felt so much pressure to get him ALL the services he could have so he could do his best BUT I started to feel we were losing focus and burning out. 
At what expense did we do all that? Can't he just be a kid? Can't we just not "treat" or "work" on something? Can we sit around in PJ's watching a movie without feeling we are missing CRUCIAL learning moments? Will he never perfect his pincer grasp due to our love of Toy Story
Balance is everything. I had to shake off that self-inflicted pressure of doing it all. He will have a pincer grasp. He will be just fine. He is not a science experiment or a part time job that I have to punch in and punch out each day making sure I completed all tasks required. He still got his therapies. We still played hooky now and then when we felt wild and crazy. It's a balancing act.
 Find your balance and don't forget that you can always practice the pincer grasp eating Cheerios while you watch Toy Story!

DS Awareness Month Post #3: 
It's fine to cry. There are so many reasons why tears can come. 
When you first hear diagnosis, you may have tears from shock, tears from being afraid, tears from loss, tears from being overwhelmed. You may cry when you first hear from relief, understanding, peace. Your tears may not come until later. You can have tears from loving someone so much it just hurts. You can have tears from wanting to fix something way out of your control. 
We can cry about wanting to take away troubles that we can't prevent from coming. We can cry out of pride and feeling so much relief about something wonderful that happened. We can cry with others since we can relate. We can cry for others since we can relate. We can cry when we learn things weren't as bad as we thought. We can cry when things get harder than we ever thought they could be. I am not a huge crier but when it comes it's needed. It's a release. It's a huge reminder that something means so much to me. 
Some may feel crying is negative but I think it's a huge testament that we have hearts, feelings, love and people that mean the world to us. I have shed tears for so many reasons. I have been with so many families shedding their own tears out of sadness, fear, happiness, joy, etc. People apologize but I say don't. You are doing what you need to do right now. You need to cry and there is nothing wrong with that. It's fine to cry.

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