Wednesday, February 27, 2013

Encouraging Independence: Picking out clothes

We've been dealing with some attitude issues with Caleb. There has been a lot of eye rollin' and "whatever!" lately. I know some of this behavior is just him growing up, stretching those attitude muscles, and testing boundaries. I also think a big part of it stems from him wanting to control. I was thinking about the fact that he really doesn't have a lot of control over things in his life. So much of his day is planned for him. Because of Spina Bifida and all the things it effects there are certain things that have to take place at certain times of the day (you fellow SB parents know what I'm talking about). There really isn't a lot of wiggle room when it comes to his medical needs. It has to be done and it has to be done at certain times. Period. To some extent he doesn't have control over his own body either. His body isn't able to do all the things Caleb would like for it to do and sometimes his body does things he doesn't want it to do. He doesn't get a say. He works hard at school all day and then he comes home to an hour of PT three times a week. It's work. He doesn't really want to do it but he has to. He doesn't get a say. So, my point is that I think some of Caleb's behavior could be a result of just plain frustration along with just normal 7 year old attitude. I've been trying to think of simple ways I can give him some control. It occurred to me the other day that I still pick out his clothes for him! Why am I doing that? He's 7, he can pick out his clothes. So, he started picking out his clothes a few days ago but it has been difficult because the closet isn't terribly accessible. I've had to pull out shirts one at a time so he could decide which one he wanted. He needed a way to see all of the clothes in the closet easily. I had the perfect solution to this problem. Here is what I did. I took pictures of all of his clothes and then created a collage in Picasa.

This worked perfectly. I did a collage with just t-shirts/short sleeves and a collage with long sleeves. I was able to get 25 photos on each page. I printed each page out and put them in protective sleeves. I went ahead and did Benjamin's clothes too. That 4 year old is always looking to control something so I figured he can start by picking out his clothes.

Seriously, this looks way more complicated than it was. It was so easy and really only took me about an hour to do. Picasa made it super easy to create a collage, I didn't have to edit any photos or even crop anything.


Benjamin looking over his shirt choices.

"Hmmm...what should I wear tomorrow?"
Caleb loved this. I think choosing his own clothes really makes him more proud of his appearance because he got a say in it. 

His outfit choice for today. He's so stinkin' handsome.
He really likes to layer things. He chooses a short sleeve shirt and then a long sleeve shirt to go under it.

Benjamin's outfit choice for today.

This sweet boy has been sick all week. I took him to the doctor on Monday because I was certain he had croup and an ear infection. Well it turns out that he actually has a touch of pneumonia! I had no idea. He has been on medicine since Monday and I think he is getting better. He still seems pretty tired but he is playing more.

So anyway, picking out clothes is our first step at giving Caleb, and Benjamin too, more control. I'm going to think of other simple ways to encourage independence. It may not be the cure for all the eye rollin' and "whatever!"s but it can't hurt. I'll continue to share some of my ideas on the blog. I figure if this is an area that we struggle in, someone else might be struggling too. If you have some "encouraging independence" ideas you would like to share, then leave a comment.



Monday, February 25, 2013

Fun at Granny and Paw-Paw's

(Before I get to our fun day with Granny and Paw-Paw, I wanted to mention my last post "Are we too sensitive?". As of this second, that post has received 782 hits, since Friday when I posted it. That boggles my mind. I know so many of you shared that post and it spread like crazy. I was not expecting that. I never intended for that post to get so much attention. I was just writing about something that had been on my mind for some time. Most of my posts get, on average, 50-75 views. Some posts get more, but rarely are they over 200 hits unless it is a big topic. I just really don't get a lot of traffic so it has been surreal to see that almost 800 people have read that recent post. It's crazy. I just want to say "thank you" again to all of you that contributed to the post by commenting to my question on Facebook. I couldn't have written that post without your input.)

Enough of that, let's get to the pictures!

We recently spent the day at Granny and Paw-Paw's house. The boys love going to see their great-grandparents. We haven't been out there since Christmas so the boys were very excited.

I took a ton of pictures...as usual.

The first thing they wanted to do was play with Nikki. They love Nikki.
Benjamin insisted we buy a toy for Nikki, so we did.

Benjamin was trying to pull up a stick for Nikki to play with.

Their next favorite thing to do is ride in the golf cart.


Apparently Nikki wanted to go for a ride too. She also wanted to give Caleb kisses.

Nikki is giving Caleb lots and lots of kisses.

Caleb trying to get away from all the dog kisses.

Nikki decides to just sit on Caleb.

Recline on Caleb.

Smooshing Caleb's face.

I was laughing so hard by this point I could barely breathe. I eventually stopped taking pictures and helped the boy out.

Riding on the golf cart with my little man.

We stopped to visit the goats.

I really want a goat. They are so cute.

We hitched the trailer to the golf cart so Paw-Paw could take them for a spin.

The boys loved this!



Benjamin found a wheelbarrow to play with.

Putting a pile of rocks on the wheelbarrow.

Trying to push the wheelbarrow.

Uh oh, it tipped over.

Trying to get it back up.

It's really heavy and awkward.

The stubborn wheelbarrow made Benjamin mad (look at that face!).

All smiles once he sits on the riding lawn mower.

As if we weren't having enough fun, Paw-Paw built a fire.
Benjamin loved the fire pit. He had more fun finding sticks, rocks, and leaves to throw into the fire.

Caleb kept a safer distance.


Seriously, Benjamin couldn't stop himself from throwing things into the fire. He's a little pyro.

After roasting some mellows on the fire, we took a short hike.
Caleb gets a free ride on daddy.


Benjamin navigates the tough terrain on his own.

We had a great time at Granny and Paw-Paw's!



Friday, February 22, 2013

Are we too sensitive?

(And by "we", I mean us parents of kids with special needs)




I've had this post rolling around in my brain for a while now. I decided to finally sit down and type it out. I think it is an important topic and maybe one we should discuss a bit. I'm wondering if I'm too sensitive to people's remarks, reactions, or responses to Caleb. When you are a parent of a child with special needs, especially something that is obvious...like a cute kid with spiky hair in a bright green wheelchair...people notice and they say things. They stare. Sometimes, often times, they say the absolutely wrong thing. But do they mean to? Are they intentionally trying to be rude? Let's discuss.

I'm going to share some recent examples:

We were at a birthday party last weekend. The party was at a skating rink so Caleb was in heaven. He was free to take his wheelchair on the rink and go as fast as he wanted, do wheelies, spins, etc. People stared, of course. That's nothing new, people always stare at Caleb. But one man seemed to really get a kick out of Caleb. He asked Caleb to show off by doing some wheelies. The man even called his daughter over to see Caleb performing his tricks. The man asked Caleb some questions like "How old were you when you started using a wheelchair?" Afterwards, the man looked at Glenn and said: "He's an inspiration to me." On the way home Glenn and I started talking about it. My first reaction was to be annoyed. Caleb isn't a circus act, he doesn't need to perform tricks for you! And the "he's an inspiration to me" comment. He's 7, he's a kid, he's not here to be your inspiration. I could feel myself getting all fired up about this stranger at the skating rink. Then I took a breath. The truth is that the man was really interested in Caleb. He talked to him. He smiled at him. The man had 100% good intentions, I have no doubt. And Caleb loves doing wheelies and looks for any opportunity to show off. Caleb loved every second of it. And Caleb is an inspiration to a lot of people. I can think of about 200 fellow SB parents who are encouraged and inspired by Caleb. He inspires me. He doesn't think of himself as an inspiration of course. Again, he's only 7. And he may never be comfortable with being called an inspiration but he is whether he likes it or not. 

One day Caleb came home from school complaining that some boys were playing basketball at recess and they wouldn't let him play. My first reaction was to get upset. Why didn't these boys let Caleb play basketball? It's because he uses a wheelchair! That's discrimination! Then I took a breath. I have no proof that the boys excluded Caleb because of his chair. Maybe they just didn't want to play with Caleb right then. Not everyone has to be his best friend. I have no reason to think that Caleb was excluded because of his wheelchair. Maybe I need to chill out a bit.

This is just 2 recent examples of about a billion I've had over the past 7+ years. I'm beginning to wonder if I have been too sensitive to comments, questions, reactions, and responses to Caleb over the years. Maybe we have all been too sensitive. For fun, I did an informal survey on Facebook to see what other parents (specifically those with a child that has special needs...I mostly heard from fellow SB moms). I got more than 50 responses to my question. I'm going to share the main issues and then share why I think I (or we) have been too sensitive about each one. I'm also going to share some of the comments I received.

1. "What's wrong with him/her?"

"I have a few words/descriptions that bother me but I think the #1 question that Bryce is asked that really bothers me is "What is wrong with you"? Or they ask me what is wrong with him. I had to teach him years ago that when he is asked this question, he is to tell them that NOTHING is WRONG with him, and that he was just born with Spina Bifida and that the muscles in his legs are not as strong as theirs and he needs the help of a wheelchair to get around. The first time he was asked that question it took all I had not to come unglued! I immediately got down and told Bryce that NOTHING was wrong with him and that he is perfect in my eyes and that I love him very much. I will probably never forget that day. Now when he or we are asked that question it does not bother me AS much but I do wish that people would just take a second to think before they ask a question and how the words they are about to use will affect that person."

So yeah, this was a big one. I know I have heard this from so many people over the years. Obviously it sounds like the person asking this question is saying that there is something WRONG with our kid. Seeing as we don't think there is anything wrong with our child, we take offense to this question. I agree it is a poor choice of words.

But a poor choice of words doesn't mean ill intent.

Here is what I think happens. The person asks "What's wrong with him/her?" but what they really mean to say is: "I'm curious why your child is in a wheelchair (insert you choice of special need here). I don't really know how to ask about your child. I'm nervous and I'm curious. I don't mean to say the wrong thing...but I don't know how to ask." Sometimes, often times, people blurt out the first thing that comes to mind. 

2. "Ahhh, bless his/her heart", "Poor thing" or "I'm so sorry"

"Yeah, I guess the "poor thing" looks we get drives me insane, like when people frown and stare in a sad manner when we walk into a restaurant  Some people say aweeeee and it's strung out like they feel sorry for Samantha. Gets on my nerves."

"I'm so sorry".... For what? Having an awesome kid? Drives me crazy, as if my son is something to feel pity for. Most days I feel like I won the lottery being chosen to be his mom! Certainly nothing to be sorry for.

Yep, I've heard these many times as well. These phrases have a strong ring of pity to them. I don't want anyone to feel sorry for Caleb. But the truth is that people do feel sorry for him. And honestly I know people feel sorry for me as his mom. I know they do. Before I was on this journey, before I had Caleb, I could totally hear myself saying any of these phrases to someone. Maybe they don't mean it to sound like pity. Maybe they are trying to be sympathetic but it comes out wrong. Again, oftentimes people blurt out the first thing that comes to their mind.

3. "As long as the baby is healthy."
"I hate when pregnant women say flippantly that they don't care the sex of the child but they just want a healthy child- well um... What will they do if the child isn't healthy..not love him/her."

"When people say "as long as the baby is healthy". Well, then what? Does that mean he/she is less of a person if they are NOT. My unhealthy baby has been one of the biggest blessings in my life!"

When I was pregnant with Caleb, after we found out about Spina Bifida, I had someone ask me if I was having a boy or girl. I told her I was having a boy, I didn't mention SB. She made a comment about how boy or girl, as long as the baby is healthy, that's all that matters. Ouch. Of course she had no idea what I was going through, she meant no harm. And I've heard "as long as the baby is healthy" a hundred times from pregnant women over the years. I think this one bothers me because I hear them saying that Caleb isn't healthy and therefore they wouldn't want Caleb and they don't want their own baby if he/she isn't healthy. But the truth is every pregnant woman on the planet wants a healthy baby. And I think women say "as long as its healthy" because they're scared. They are wishing and hoping that nothing is wrong and that everything goes perfectly. 

4. Not using people first language

"We hear "the spina bifida child" by the receptionist at our PT."

"Defining him by his condition "a Spina Bifida kid" REALLY rubs me the wrong way."
"It gets on my nerves when doctors refer to him as "Meylo". "Hes' a meylo."


So we want our kids to be seen as a person, not a diagnosis. Caleb has Spina Bifida, he isn't the Spina Bifida kid. Fair enough.

5. "I don't know how you do it."


"I don't like being called a Super Mom just because I am raising a kid with SB. I'm not doing anything all that remarkable. I'm quite lazy some days."

"I don't know how you do it". How do I do what, love my kid???"

I've heard this one many times. This one kinda makes me laugh because I think what people are really saying is: "Girl, I'm glad it's you and not ME!". And honestly I think "I don't know how you do it." anytime I see a mom with more than 2 kids. Seriously,I am in absolute awe of those of you with more than 2 kids. And I think this about some of my fellow SB moms that have kids with higher medical needs than Caleb. I'm overwhelmed by all they have on their plate and I've wondered how they do it. But the truth is that I could do it and would do it if I had to.

Here are some of the other comments:

"Will he outgrow it" really??? That one always gets me!! I had someone ask before where did I get his walker that it was a good idea, they wanted one for their grandchild."

"When I was pregnant the WORST was it seemed everyone felt compelled to tell me about their "uncles, brother's neighbor, who went with them to elementary school—HE walked! So your son will be fine." THOSE have to be the comments that bothered me the most. Only worse when followed by, "Should I have them call you?"

"I do find 'handi-capable' and 'blessed with SB' and things like that really patronizing. They're kind of dumb things to say."

"I find handi-capable downright hilarious! What does that MEAN???"

"I hate the Holland story! People have always read it to me or given it to me like SB is thrilling- I'm sorry but SB or not I want the Caribbean!"

"People mean well, but I don't like when Simeon is referred to as a "fighter" or "superhero" or an "inspiration." It just seems unfair to put this little baby on a hero pedestal. I want him to have permission to not be a hero. I want him to feel he can grow up to be whatever kind of man he wants. I want him to feel that he can be disappointed or blue sometimes if he needs to be. It's strange because I know a lot of moms who talk about their special needs child in these same terms but, for me, it seems to set him apart even more and place unneeded pressure on him to be "super."

I've heard all of these and then some over the past 7+ years. I've had my feelings hurt more times than I can count. I've wanted to smack people for staring and for saying dumb things. But I'm realizing that the vast majority of people mean no harm. I think I have been too sensitive. Too quick to assume that everyone who stares is being ugly or everyone who gives me the head tilt along with "I'm sorry" is expressing pity. I know before I had Caleb I would totally stare if I saw a 2 year old rolling around Target in a wheelchair. I would totally wonder "What's wrong with him/her?". I would totally think, "I wonder how that mom does it." Maybe, just maybe, most people are nice. They are curious. They want to ask questions but they might not ask the way we want them to. And that's okay.  After I posted this topic on Facebook, I got a message from an old friend:

"I teach my kids that being different-whatever the case may be! (race, religion, special needs, etc)-is part of humanity. To be sensitive to others feelings, and not judge based on appearances. There are times when we have been in public and one of them have stared to long or made comments out loud that made me want to crawl in a hole. Hopefully I have always handled it gracefully. I would like to be the mother who feels comfortable approaching someone (for the sake of knowledge and understanding for my children) without looking like a fool. I hope I'm not looking like a fool right now... When is someone too intrusive? When is it acceptable to ask questions? And what is an acceptable question?

Her message to me proves my point. We've made it too hard for people to say the right thing. I think most people want to say the right thing, they just don't know what it is so they say the first thing that comes to mind and often its the wrong thing to say.

"I honestly think the world has gotten so politically correct that nobody knows WHAT is okay to say anymore. Even being a disabled person myself, I sometimes get looks when I use certain words. I refer to myself as "handicapped" "disabled" and a bunch of other things, and sometimes the SB community looks at me like I cussed in church! Lol! For me, I guess it all depends on the character and meaning behind the words. I don't mind if my friends tell other people I'm handicapped or whatever. What's more weird for me is when someone refers to my disability and appears uncomfortable about what to say about it. As long as you're not calling me a derogatory name in a hurtful manner, I'm cool. Call me what you want. Just don't be mean."

"I honestly don't get offended by much. I understand people don't know how to come out & ask the right way. I know people are going to stare. I find myself staring at times but only because I'm curious as to what condition someone has. I love teaching people about SB so even if they do stare or ask what is wrong or come off the wrong way, I take advantage of it to spread the word. I'm sure a lot of people think "shoot, that came out the wrong way" but its too late to take back the words."

"I don't let some of the things people say bother me because I feel like most of it comes from a good place or good intent."

"Overall I don't mind most comments, because I know their intent behind them is innocent or from a place of caring. I'd rather they try to connect than to say nothing. I love to educate."

"I was very easily offended as a new and young Mommy. Now, I could care less. Unless someone is intentionally being UGLY. As a Mom of 2 kids with special needs, this is just LIFE, I realize that the average Joe on the street doesn't have the same exposure and comfort as I do. People are much too sensitive, always looking for a reason to be upset."

"I don't get offended by much because I probably wouldn't have known what to say before I had Ella."


"I think most people who say things that might rub someone the wrong way, do so out of their ignorance, so I generally just chalk it up to their lack of education on the subject. Most people don't mean to be rude so I try to look at it that way."

"I know that people are just people and some have more exposure and experience and common sense and some people are just uncomfortable and awkward. So, I treat them with the same respect I hope they will treat me and my kids with. For the most part, I don't think anyone means to offend. If I get offended I try to think why am I so sensitive about that and I get over it."

"I think for special needs parents that reaction to feel judged is heightened. I think it all stems to before we HAD kids with special needs. If we saw a special needs child in the store or an adult with a disability we could take a moment to say, "man, they're so brave." "So strong." "So unlucky." "wow, I pity them." I think it's these past experiences that make us so vulnerable to feeling segregated.
So, if somebody says something about our strength or our courage we take it extra hard, because we've been inside their brains before, back when it was our brain. lol We know what those speechless, sad eyes mean. We're being pitied. They're feeling sorry for us. So, we have the sad pity-you eyes that we also once delivered to SNPs. And we have the ones brave enough to speak up with their generic, but still well meaning, "Boy, he really gets around in that thing." kind of comments."


I guess my point in this ridiculously long post is that I've been too sensitive. Maybe we all have. So the challenge to myself (and to you as well) is to filter the comments/stares/responses/reactions/questions with the assumption the person means well. Assume they have good intentions. Use it as an opportunity to educate. We know our kids are awesome so let everyone else know it too. Are there some people who are just plain mean and will say awful things on purpose? Yes. Yes. Yes. But, I do believe those folks are the minority and not worth our time anyway.

The more things we add to the "Don't say this!" list, the less we make ourselves available. We have made it hard for people to know what to say because we keep adding to the list of things NOT to say.

I'll get down from my soapbox now. :)

I welcome comments and thoughts. Thanks to everyone who commented on Facebook. I loved reading all the responses.

Tuesday, February 19, 2013

Ditching school with Caleb

Caleb had a doctor appointment this morning. We were done by 11:00 so technically I could have taken him to school but we were downtown and so close to the museum. He was begging to go to the museum this past weekend but we weren't able to go. School or Museum?? Museum of course! I figure it is okay to ditch school occasionally, right? The museum is technically educational, right?

The museum has a Titanic exhibit.



It is "Engineers Week" at the museum.
Caleb was given limited supplies and had to figure out how to transport a ping pong ball down a zip line using only those few supplies. With my help, we figured it out. Our ping pong ball sailed down the zip line in 2 seconds!

Caleb's favorite spot is the water tables. 

Sitting on a bed of nails. The nails aren't actually raised...he wouldn't let me push the button to raise them.



Using the camera to look in his mouth. Silly boy.

We only had a couple of hours at the museum before we had to leave to get Benjamin from school but we had a good time. Sometimes ditching school for some one on one time with mommy is necessary.


Friday, February 15, 2013

New Look

The blog got a much needed makeover. I've been wanting to change it up for quite some time but I always get nervous that I'm going to mess it up. I think it looks good.

Clean. 

Bright. 

New. 

Hope you like it!

Thursday, February 14, 2013

Valentine's Day

Valentine's Day is so fun when you have kids.

Last night, after the boys had gone to bed, I decorated the kitchen table.
They loved seeing it this morning when they woke up.

They also loved the special Valentine donuts!

He's got a mouth full of chocolatey-glazed goodness in his mouth.

 Caleb sportin' his adorable tie shirt I made!
I got the idea here (it's so easy!!)
He looks so handsome!

For the record I tried to get Benjamin to stand next to his bubba so I could take a picture of both of them in their tie shirts. Apparently my request was unreasonable in Benjamin's 4 year old brain because he threw a humongous fit. 

After spending a considerable amount of time in "time-out", he did let me take a photo of him in his shirt. He refused to look at the camera. I love this kid, but man alive he is half crazy! He sure looks cute in that shirt though.

 For dinner the boys got their favorite thing: Breakfast for Dinner! 
They love breakfast for dinner.

Yummy scrambled eggs.

Yogurt fruit smoothie in a fancy (plastic) glass.

And heart shaped pancakes.

And Glenn and I managed to have lunch out together today, without kids. It was nice.

All-in-all a good day.

Happy Valentine's Day





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