Perception & Perspective

Just because I have accepted the fact that Sean has down syndrome does not mean I'm so particularly thrilled with it. I almost feel like people confuse acceptance of a diagnosis, condition, set of issues, etc with being ok with it. I'm not ok with it. I probably never will be. I am ok with raising my son the best way I know how and more than anything else in spite of the uphill battle we seem to face.

I'm also ok with answering any questions someone may have about down syndrome and what that means for us. I can't speak for all families or people, but I can speak for us.

Why am I writing this? Well.... I had the pleasure of speaking with a friend of mine yesterday & it got me thinking. I was happy that she felt comfortable enough to ask questions and felt that because she's close with us she wanted to know more about Sean and down syndrome.

I always assumed people knew that I was pretty open about our life. I guess not. She mentioned that she didn't want to offend me. I assured her that she wouldn't. That it's better for her to ask. I'm not offended easily.

But after we talked I realized that as comfy as I seem in my newish role as a mom of a child with special needs, I'm really not. I struggle everyday with the fact that Sean does not reach MY goals when his chronological age dictates he should. I struggle everyday with the fact that I have no idea whether things Sean does or doesn't do is related to down syndrome or just Sean's personality. I struggle with knowing whether down syndrome is entwined with his personality or not. I mean I guess it is. The way a person processes information helps to shape the personality right?

As I wondered why I struggle so much to find balance, I realized that I had the same difficulties with balance as a new mom period. After Meredith was born, I struggled with balancing her needs with my wants. I still struggle with that. I struggled with being the mother I was vs. being the mother I thought I wanted to be. Again... I still struggle with this one.

You see where this is going. I have accepted the fact that Sean has down syndrome in much the same way I have accepted that Meredith has brown eyes. It's there. There's nothing I can do about it. My struggle is and always has been the balance between their needs & my wants.

Someone (an old supervisor giving me a bad review) once said that life is all about perception and perspective. She perceived me as a threat to her job security (as noted by a corrected review by her supervisor) and so from her perspective everything I did annoyed her. What does that have to do with the price of grapes in China?

My life is all about perception and perspective. I perceive Sean as an almost 2 year old, but my perspective shows me where we need to make up the difference. My perspective allows me to see what are my wants vs his needs.

I try to project an air of confidence in my role as his mother. More so for myself to truly believe I can do this. I try to be proactive for both my children so that I can be confident in my ultimate decisions. Such as paying out of pocket for speech therapy so that the physical therapist & speech therapist are from the same therapy center because I feel this is the best scenario for Sean. I try to do my research on various subjects related to my kids so that I'm not caught off guard when/if something comes up.

In talking with other moms of both typical kids and kids with down syndrome and his therapists, it helps me to have a realistic perspective of what I can & should expect from Sean. It also helps me to see what are lofty goals (my wants).

Acceptance is really about perception and perspective. Who's perception? What perspective? I don't know. I guess the same way everyone grows & processes life differently, everyone's perception & perspective is different.

It's very hard to change a person's perception. Even if it's your own.