The Perfect Friend For Your Child With A Disability

I've noticed, over the years, that there are certain types of personalities that work best with my daughter. Obviously this is true for everyone - we all clash with some and get along perfectly with others. This is also true for kids with disabilities.....However, kids with disabilities also need an extra quality in their friends.

I don't know if you need a nurturing quality or just more empathy than the average kid, or what it is exactly. Anytime my daughter is with a bunch of kids there is always a certain one or two that gravitate toward her. Now, there are the ones who accept her and include her in their play, but then there are the ones who not only include her but they go the extra mile. These kids ask her if she needs help, they pick things up for her as soon as she drops them, and they speak up to the other kids to make sure she is included. These kids almost seem like ambassadors. They carry messages back and forth between my daughter and myself or other kids. They also fetch things that my daughter cannot get herself and would normally ask us to get for her - I'm not sure she even asks them for help, all the time. It seems to be instinctual for some of these kids. Some of these kids are kids she's known for a while, but some of these kids are kids she has just met - it just comes naturally to them.

Some of these kids, like her friend Shalom(she's 8 now), have been around her for years and know that she needs help with things. Now, regardless of the fact that Shalom has been around her for a long time she still has this extra quality that I talked about. I was watching her when we went to this park over Memorial Day. Raven sat with us adults, on the sidewalk, watching the kids play and yelling at them to run faster or hurry and go down the slide, etc.
Everytime Raven called her Shalom would run over to her to see what she wanted. Sometimes Raven would just want her to go down a different slide or try something different so that she could watch her do it. Shalom was running around having fun, but she always seemed to come back and check in with Raven from time to time.

The thing that struck me the most was this - There was a little girl with a little tiny puppy on a leash. She was taking her puppy down the slide and all the kids were surrounding her and gushing over this puppy. Raven loves puppies and was watching the kids play with this puppy. The playground was covered in wood chips so Raven couldn't move off of the sidewalk. Next thing you know here comes Shalom holding the puppy. I watched her ask the little girls mom if she could bring the puppy over to Raven.

I'm going to guess that most people watching this would think very little about it, even Shalom's parents (I don't know).
But, to me this is huge. This is not how the average kid, or even adult acts. There is this certain few that just have this in their character. I hate to not give any credit to the parents of these kids, but I'm not so sure that they have a lot to do with it. I have seen kids from every background imaginable - it really just seems to be something about the child's personality and character.

There is something so wonderful about a child who is not only worried about themselves, but with no coaching, also goes out of their way for their friends.

Don't Assume!

Something my daughter said the other day got me to thinkin'

I always feel bad when people want her to go with them to places that I know are not that accessible or that would be too scary for her to do. Some things like amusement parks are not as much about accessiblity as they are about her anxiety and how she would never even get on the carousel.

Over Memorial Day weekend we had friends over and we were all walking around the lake by our house. Half way around there is a playground that is brand new, however still not accessible. Our friend's daughter saw the park and got excited and wanted to stop there. I cringed inside because I know that Raven will just be sitting there watching the kids.

Raven started running (in her chair) and was telling me to hurry up so they could get to the park faster. I told Raven " you know, I don't think they have an accessible swing for you at this park".
Her answer was " I know. That's why I just go there for fun." and she took off.

I really have to be careful not to project my own feelings onto her. I think that's a good lesson for everyone. Similar to the post about getting invited to birthday parties - people just like to be invited. They want to be included - they can figure out if they want to go or not or if there's anything they can do there....or if they even care. Obviously it is enough, sometimes, just to be with your friends and to feel like you're part of everything. I'm sure some kids would feel like they weren't a part of things if they couldn't use the playground equipment, however, the lesson is not to assume.

Should You Continue To Be Friends With Someone You Find Out Is Racist, Sexist, etc.??

This one really has me stumped and I've been thinking a lot about it lately.

OK, here's an example - Say you have known someone for a period of time and not only do you really like them, but you also find them to be very moral, ethical, etc. Then one day this person makes some racist statement and shocks the hell out of you.

I don't know what I am supposed to do with this. It keeps bouncing around in my head that this person isn't who I thought they were and I feel like what they said might cancel out all the good stuff I knew about them before. I feel like I can't process this scenario - it just bounces around in my head and can't find a place to land.

Sometimes I try to think of what a person of color would do in this same situation - if they had a friend for a long time and then one day their friend makes some crazy prejudice statement. What would they do then? That made it even more confusing since I am not a person of color.

I AM the mother of a daughter with a disability and lord knows we have heard our share of comments from people we know. I guess if I use this as an example - well, whether I want to ditch someone as a friend usually depends on the severity of the statement they made. I will say that sometimes I can never think of that person, in the same way, ever again, but I still consider them my friend.
Maybe this is how other people deal with this stuff too - who knows. Maybe if you are a person of color, a person with a disability, a woman, etc. you have to live with a certain amount of ignorance, which means certain comments from people.

I guess as a woman I have had lots of guys make statements to me that are way sexist and they don't necessarily get dumped as my friend. I do think that they fall down on the list of people I want to hang out with though.

I guess I am just thinking out loud here, because I can't really come to any real conclusion here. I'd like to say that anyone who makes any prejudice comment of any kind is punished at once by losing their friendships with people, but I don't think that's the way it works........I'm just not sure how it should work though either.

What Do You Take For Granted?

The response I got to my last post, about birthday parties and how much that means to a mom whose child is different and doesn't get invited to a lot of things - well, that made me think about how many things we all take for granted.

There's many things I take for granted and don't even realize. I do however have the blessing of not taking some things for granted because they are things that we deal with on a daily basis.
I'd love to hear everyone's responses about things they realize that they take for granted or that they know other people take for granted.

I thought I'd list some that I think about based on our families day to day life.

Some people might take for granted.........

- ......the fact that most children choose to eat on a fairly regular basis and my daughter will stop eating for days, weeks, or
months at a time.
- ......the fact that their 11 yr old has more hand strength than a toddler.
- ......the fact that most of us can go to the bathroom whenever we like and can expect things to "work".
- ......that most people can go through a day without throwing up...and you never know when it could happen.
- ......that their children will develop "normally".
- ......that your child will become more and more independent as they get older.
- ......that your child (or you) can go through a day without having an emotional breakdown over trivial things.
- ......that you can go to a public restroom whenever you choose and can expect to be able to fit in the bathroom door, as
well as the stall.
- ......that you are either tall enough, or aren't in a wheelchair so that you can reach public phones, shelves at stores, etc.
- ......that you can take public transit whenever you like and can assume they can acomodate you.
- ......that you can go out in public and not be stared at or whispered about or pointed at.
- ......that you have people who actually offer to baby-sit your children or at least if you ask they don't make excuses of why
not.
- ......that you, or your children, don't have to have many many procedures and surgeries in their life.
- ......that your child will sleep through the night by oh, say, 10 years old.
- ......that you can go to any store, restaurant, etc., that you want and don't have to worry about it being accessible.
- ......that your child will take care of you when you're old instead of you still taking care of them when you're old.
- ......that you can work if you want because your child can go to almost any daycare or school.
- ......that the million dollar limit on your medical insurance will never be maxed out in your life time causing you to lose all
medical insurance.
- ......that you can apply for any job you are qualified for and feel like you have a fair chance of being hired.
**** and how about the fact that your kids get invited to birthday parties?.....don't take that for granted because if you read the next post on this blog, and the comments, you will see that some things seem so small to the average person, but to some of us it is a big deal.


Oh man, I could go on forever I think. I'd love to hear what other people think others take for granted (whether it has to do with people with disabilities or something else).

How Many Birthday Parties Do Your Kids Get Invited To?

If you have a child with a disability the number might be low...depending on a lot of things of course. My daughter has not been invited to her cousin's (2) birthday parties in years. I'm feeling like she only went once to each and it was 5 or 6 years ago (they didn't live nearby before that).

These 2 girls are my brother's girls and the youngest is 6 months younger than Raven and the oldest is 2 years older than her. The girls get along great and have lots of fun when they get together. Raven's cousin's always come to her birthdays.

My husband thinks we don't get invited because then they would have to worry about what she would be able to do - for instance, last fall the oldest of the cousins had her birthday party at a place that is outdoors and has go carts, miniature golf and other outdoor kind of stuff (I can't remember what all they have at those places). Now in this instance I would worry, myself, about what Raven would be able to do and if she'd have fun (she's in a wheelchair)....although she can pretty much have fun no matter what - she always makes the best of things. This weekend is the younger cousins birthday party, and as they have many times, they have rented a room at a hotel and all the kids are going to go swimming and eat pizza and then a few of them stay over night in the room. Well now, this is something that Raven can do without a doubt. She loves to swim and she loves being around other kids.

My brother lives in a small town and so we have stayed in this same hotel when we have come to visit and have had his kids come over and swim. I guess there is also the issue of Raven being delayed...among other things. I'm sure that to some of her peers she acts "weird". She's 11 and she still has imaginary friends and they're usually famous teenagers from Disney TV shows and movies :) She also talks more like an adult than she does a kid her age. This seemed to be more off putting when she was younger, but now the kids seem to think she's funny when she is real dramatic and says crazy stuff. Also, I think the kids are older and they understand more that she has a disability so they might not have the same expectations concerning her behavior.

I thought about saying something to my brother about it. I said something a few years ago and he said that we were welcome to come, although that hasn't changed the fact that we never get invited to the parties from year to year. I decided not to say anything to him, for now, because I started thinking about how difficult it might be for us to make sure Raven can participate (depending on the activity). That I feel guilty about because I feel like I should just try and get her to anything and everything, even if it's hard.

I'm not really sure what to think about it all. In some ways I empathize with my brother and his girls, but then of course I empathize with my daughter more than anyone.

I didn't mention what my daughter thought because she has not brought it up. I guess she hasn't put it together that she doesn't get invited. I think she did ask me why we didn't go one year and I said that we couldn't go (for some reason I made up) and then she just got annoyed with me, like I was keeping her from having fun and going to the party.

I don't know if I should tell her that she wasn't invited (when/if she asks) or if I should shelter her from that.

I guess that my ultimate opinion on this is that you always invite people and then let them decide if it's something that their child is able to do or not.

I suppose there is also the issue of - do you invite family no matter what? Our close friends invite Raven to all of their kid's birthday parties and she is always the only one that doesn't go to school with them. I feel like she looks a little out of place sometimes and doesn't have people to talk to as much, but she doesn't seem to mind, so I figure I shouldn't worry about it since she doesn't. Some people let their kids choose who they invite to their parties and wouldn't make them invite someone who they excluded, etc. I don't know what my opinion is on that one either except for that excluding people can really hurt a lot of people's feelings.

I'm sure people have their own opinions (depending on the way they were raised, how close they are to their family, etc.)
I'm really close to my brother, so........... I don't know.............. I guess in the end I'm not really sure where I stand on the whole thing.

More than anything it just sucks to be in this position because no one wants to worry about their kids feeling left out.