Wednesday, March 31, 2010

Fitting In: Part 2

Thanks for letting me rant, and for taking the time to respond to me when I'm being less than graceful about my life. I would never ever want anyone to think that I don't love my child or smother (not literally) him with kisses each and every day. I love and appreciate every breath my child takes. He is the most amazing, wonderful thing to ever happen to me. I want to rant a little more though, so skip this one if you need to I won't mind.

I wish there were more kids in our community like Skyler. I don't just mean, cute playful and loving. I mean blind too. Don't get me wrong, it's not that I want people to suffer, and it's not that I'm jealous of others and I wish something bad on them.. I just wish that it was easier to find people in the community to relate to. There are blind children born all the time, but not a lot. Not enough for people to see them as normal. Not enough for me to be able to go out into the community and find someone else like me, someone who can relate. I find it's even hard on here to find other parents with blind children in the blog world. People don't talk about it enough, typical people aren't exposed to blind children enough. And who will my child relate to when he gets older and realizes/learns that most people can see. I'm hoping we will have some friends with blind kids, but I'm worried the only time he may meet up with other blind kids is at CNIB parties.

So when I say I have the desire to feel like I fit in, to feel like I belong, I don't mean that I wish my experiences were more like theirs. I don't wish that I had things easier, I don't wish that I could relate to their typical children, I wish there were more people who could relate me. I wish there were more kids like Skyler so he doesn't have to grow up feeling alone, feeling different than everyone else. We are all different in our own ways, but it helps us feel like we belong when we can find someone who is different in the same way that we are. I suppose that's what I want. To feel that there are more people out there who just get it. Less people who ask "What's wrong with his eyes?" less people who ask "Why is he so small?" and more people who can say "My child is tiny too, my child has nystagmus/strabismus as well."

And not just that, but I want people, even typical people to normalize blindness. Not to see it as something they should pity or look down on. I want to educate them, I want them to know that my child's life is no less wonderful or beautiful than theirs. I want them to understand that he experiences the world in his own way and it is in no way less meaningful. He has the same wants and desires as any kid, he wants to be accepted for who he is, to be loved, to be friends with others and not to be judged or gasped at or pointed and laughed at. In fact I'd say I want that for all children with special needs regardless of what it is.

I think the problem is that most "typical" people assume that most others are "typical" as well, without giving a thought to the possibility that maybe they are hurting someone else's feelings when asking why they don't seem to be the same as everyone else. And to go even further, some people don't realize that they need to educate their children on the importance of accepting others regardless of their differences. Some do, but a lot do not. It's not often a problem with the little ones they are exploring the world and finding differences and "sameness" everywhere. It's more when they get to the teenage stage and they don't think about anyone but themselves. A lot of teenagers are cruel to kids with special needs. I know this because my high school had a large program for special needs students. It was not uncommon to at times see kids laughing and pointing.

I'm hoping that maybe by being open about Skyler's conditions with everyone we meet, that someday we will pull others out of the woodwork. Maybe we will find others who have had similar experiences but didn't know where to go or who to talk to about it. I'd love to set up a play group for parents with blind kids, somewhere safe they could play for a while as the parents have time to talk, but I don't think there are many people in the city with blind kids who would have the time. Even a playgroup for parents of special needs children would be wonderful, but it's hard to find those other people. I have been trying for months to find any play group in the city (typical ones) and I've only found one so far. However, it's worth a try. I don't see why I shouldn't give it a shot.


CLC said...

I am sorry it is so hard for you to find other Moms to relate to. It's got to be ultra frustrating. I wish that you could open your mouth and tell those other Moms how easy they really have it.

Thinking of you and your adorable Skyler!

Corrie Howe said...

First I follow a blog of a mom of a 12 year old blind girl. Second you may find that Skylar doesn't think he's different. I know Jonathan doesn't see himself as different. I find that people think whatever their life holds is normal, because they don't know anything else.

Stacie said...

Have you looked online to see if there are groups that deal with the same things as Skyler other than the CNIB parties?

I honestly cannot say I know what it's like to deal with what you do. I can only tell from your post how frustrating things can be.

Karen said...

Don't worry about ranting. We all do it sometimes.

Since I don't know where you live, I can't say for certain where to look for play groups and support groups, but here are the places I'd start:

The public library usually has a story time for toddlers and a lot of those moms are stay at home moms. They may know of some play groups or be interested in starting one.

Your hospital may have some leads on local support groups. Same with his eye specialist or neurologist. Ask their office staff and the hospital's grief couselor. And yes, I know you aren't grieving about his condition, but the counselor will be the one most likely to know about support groups. Also ask any home health people who come to your house to offer him therapy. They probably go to other people's houses too and might be able to ask around about interest in a support group or play group.

And I'd try is the public school system. In the U.S., all the public schools are required by law to actively seek out kids with disabilities to offer support from the earliest stages. Because of that, the local schools are a good place to find other families that might be in similar situations. I'm sure Canadian law is different but I'd give it a shot. Can't hurt.

Lopez Family said...

Hey! Thank you so much for getting back to me! I was seriously worrying all day that you would think i was some wacko or even too forward. I apologize that i am blog-illiterate but i don't know if there is anyother way to comtact you (e-mail) that i am missing, but blogging is fine too. I had this crazy push yesterday to look up all this stuff on my daughter. I haved been feeling really worried/helpless/frustrated, et al this past week about Kylah and her conditions. I have dealt with it by myself (of course family has been awesome) but i have never reached out to the community or on these online groups. But now that she is getting older and kids are getting bluntera and she is realizing that she is different or not as goodat things... the list goes on and on.. i feel such a desire to get out there even though she's already 6 and make friends online and try to find groups here in my area so that she and our family can get involved with the special needs communities and develop friends there. We have great friends but no one that understands or that she is going to be able to relate to. Life is going to get tougher and tougher and i want her to have a great support group, not jsut us. I have never really thought about talking about it on our blog, but i am really bad at blogging. But maybe it could help someone who is struggling just to knoew that i understand, that is what i just loved about your blog when i read it. My daughter hasn't had to take hormone replacements, but she is checked every so often to make sure that she is still producing. when she was about 1 she started having infantile spasms/seizures and that was just such a hard time. We had to practically live at the hospital and the ronald mcdonald house next to the Childrens Hospital in Seattle (we are originally from WA) We had to give her steroids to stop the seizures. When she was released i had to give her shots everyday and check her urine/poop to make sure the steroids werent making her bleed internally. She has been on meds since bt she has continued to have dificulties controlling the seizures. as i also mentioned she is lacking strength and control on her left side of body. When she was born her eyes moved alot. It just never went away. I took her to the optometrist from the ages of 3-7 months and they just always said that it was normal, but we just knew something was wrong. i think they got annoyed of me and told me when she was 1 we would do a CT scan. I talked to her pediatrician (amazing man) and her jsut said that we weren't going to wait and ordered an MRI and then called us into his office and delivered the news. We then took her to a different eye doctor and they told us she was pretty much blind, that maybe she would see in shadows. I left the office and just cryed and cryed. I wasn't crying cuz i was sad i was just so thankful that she was mine and that she came to our family and that she would be okay cuz we love her and would give her everything she needed. She had such amazing docs in washingtona dn also now in Texas. She has just been such a miracle. They told us she might not talk, or walk, or see... but she can! She is so smart. She is learning to read, though she has low vision and quite honestly i don't know how she does it cuz her eyes move constantly. As long as the word are not too small or too close together she can read or sound out letters. She has just adapted to her disabilities. She will turn her head a certain way or look up or down or look out of her peripheral vision, i don't know but she has figured out the spots where she can see better. She can't see too far away. And sometimes things need to be like at her nose. She still runns into things and has a hard time with balance and footing transitions but she has jsut done wonders in her adapting. Sorry this is so long but it just so refreshing to talk to someone who understands!!!! thanks for the listening ear and if you ahev any questions or just want to chat i am always here!!! Ashleigh