Diva wears AFO's (lower leg braces) to help with her cerebral palsy. She LOVES them. Geek and I say she views them as just another accessory. She is not bothered in the slightest by them, she got them with her favorite colors (pink and purple) and one of her favorite things is on them (ladybugs.) We know they are helping her.
Anyway, she has a little tummy and doesn't like anything tight so jeans are out of the question. She usually wears "yoga" like pants (leggings?) and they usually aren't baggy enough to go over her AFO's, so they are usually seen. For school, since they wear uniforms, she has skirts or jumpers she wears (again, no khaki pants...until I get a chance to make her some with elastic in the waist) so it's leggings or stocking or knee highs...her AFO's show.
Many people in the family have thought she was wearing cute ladybug knee socks when they have seen them peeking out from under a longer skirt or pants.
Basically, her friends, classmates, the family, anyone she is around a lot are totally used to them...as they should be.
Kids are curious, they see something they haven't seen before and they wonder what it is. There have been a few who were brave enough to ask either me or Diva about the braces. We say that they help her walk, the child usually tells her they are cute or just an "ok" and it's on the the next thing.
But...
Then there are the adults. They stare and that makes me uncomfortable. Diva doesn't notice, or if she does she just doesn't care. Have I mentioned that this child has an extremely high self-esteem and knows that she is smart, beautiful, and loved?
And with Bubba, it's worse! There is no way to tell by looking at him that he has autism, ADHD, or Tourett's. He tics, he stims, he has melt downs, he has impulse control problems. Again, kids don't really care but the adults...they can be so rude.
He doesn't need more discipline, honestly, he is probably upset because we had to make an unexpected stop and he didn't have enough time to mentally prepare himself. We don't need to yell or raise our voices with him, it will make him shut down totally; talking quietly to him is most effective. Yes, he is dancing in the frozen food section, but he isn't hurting anyone and he isn't in any ones way so stop throwing me dirty looks, he's just stimming.
Here is what I would want you to do, I can't speak for everyone, but maybe it will give you some in site:
-Don't stare! It makes me uncomfortable. If you want to know what Diva's braces are for, ASK! I'll be glad to answer most of your questions. And really, your kids aren't bothering us by asking questions, they are just being kids.
-If Diva is in her wheelchair, respect it. Offer to let me push her chair up front so she can see what's going on. Don't expect me to push her into the grass so you can take up the entire sidewalk. Don't give me dirty looks when I say "excuse me" so I can get through.
-Don't click your tongue, roll your eyes, loudly sigh, make snide remarks, etc about our parenting. There is such a thing as in invisible disease...like the 3 Bubba has! Heck, you wouldn't know about Diva's if she wasn't wearing her AFO's.
-If either kid is having a meltdown, either offer to help ("Can I give you a hand?" is the best thing to say) or go away.
-Remember, Geek and I are under a lot of stress and trying to make our kids lives as "normal" as possible. If I look like death warmed over, don't tell me how tired I look...trust me, I know! Just smile and say "hello" and don't get upset if I don't want to stay and chat, especially if I don't have the kids with me. It may be the only "me time" I get that week :0)
Showing posts with label tired. Show all posts
Showing posts with label tired. Show all posts
Monday, January 27, 2014
Please stop...
Labels:
ADHD,
AFO,
asperger's,
ataxic cerebral palsy,
autism,
CP,
family,
jerks,
pissed off,
special needs,
support,
tired,
tourette's
Saturday, January 25, 2014
I must be weak
Bubba and Diva are really becoming a handful. Geek hasn't been much help and in fact seems to retreat into his computer games every chance he gets. So I handle it, I handle it all and feel like shit when I ask him to help out...especially when he spends the time yelling at the kids. I wonder if being a single mom would be better for all involved.
I don't think I ask much: take the trash out, do the laundry (I fold and the kids put away), clean the bathroom, mow the lawn, and supervise the kids cleaning at times. Geek will help out more when I'm sick or hurt (I have a slipped disk in my back so throwing it out happens every now and then) but I still do 95% of the child care and cooking. I cannot imagine how much of a mess things would be if I had an actual job!
Geek can be worse then the kids about leaving things around the house. He has this bad habit of taking his clothing off and just leaving it where he got changed at. Drives me nuts! He is a grown man and I pick up after him more then I do the kids! And I swear he does things in the worst way possible (like folding laundry or loading the dishwasher) just so I don't ask him to do it again.
The kids needs are wearing me out. I feel more worn down everyday. I'm on 24/7. Even on the few days each month I can sleep in, it doesn't happen. Someone needs their hair done or can't find something they were looking for (even though they would find it if they moved something!)...see what I mean? Kids get sick? Mommy! Bubba needs nebulizer treatments every 4 hours? Mommy! What's Daddy doing? Probably playing his dumb ass computer game.
I've spoken to him about it many times over our relationship, things change for a few months but then they are right back to where they were before. I barely have the energy to give to my kids everyday, I defiantly don't have the energy to deal with Geeks computer game addiction.
I must be weak to stay with a big man-child. I must be weak because my kids medical problems are crushing me...heck, my own medical problems are crushing me!
I just want a few days, totally alone, no husband/kids/cats to take care of. I don't want to worry about anyone but me and recharge my batteries. But that will never happen, so I just keep figuring out how to keep functioning.
I don't think I ask much: take the trash out, do the laundry (I fold and the kids put away), clean the bathroom, mow the lawn, and supervise the kids cleaning at times. Geek will help out more when I'm sick or hurt (I have a slipped disk in my back so throwing it out happens every now and then) but I still do 95% of the child care and cooking. I cannot imagine how much of a mess things would be if I had an actual job!
Geek can be worse then the kids about leaving things around the house. He has this bad habit of taking his clothing off and just leaving it where he got changed at. Drives me nuts! He is a grown man and I pick up after him more then I do the kids! And I swear he does things in the worst way possible (like folding laundry or loading the dishwasher) just so I don't ask him to do it again.
The kids needs are wearing me out. I feel more worn down everyday. I'm on 24/7. Even on the few days each month I can sleep in, it doesn't happen. Someone needs their hair done or can't find something they were looking for (even though they would find it if they moved something!)...see what I mean? Kids get sick? Mommy! Bubba needs nebulizer treatments every 4 hours? Mommy! What's Daddy doing? Probably playing his dumb ass computer game.
I've spoken to him about it many times over our relationship, things change for a few months but then they are right back to where they were before. I barely have the energy to give to my kids everyday, I defiantly don't have the energy to deal with Geeks computer game addiction.
I must be weak to stay with a big man-child. I must be weak because my kids medical problems are crushing me...heck, my own medical problems are crushing me!
I just want a few days, totally alone, no husband/kids/cats to take care of. I don't want to worry about anyone but me and recharge my batteries. But that will never happen, so I just keep figuring out how to keep functioning.
Labels:
computer game addiction,
emotional,
family,
kids,
lonely,
pissed off,
special needs,
support,
tired
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