I was talking with a friend the other day who suggested the theme for this post. She was asking me about how to teach her daughter about people with disabilities. It's something that's always in the back of my mind, but I hadn't ever really thought about the proper way to approach the subject. Ty and I have always said that we're going to be really open about our experiences and our journey with everyone, but there are still some people out there who may be uncomfortable with how to approach the subject with us. So, I'd like to share my thoughts, my opinions and my feelings about it. If there are other parents of SB kids, or other disabilities, you may have other opinions, and I'd love to hear them.
The first thing that I think of is that our situation is not to be pitied. There was a commercial here in the Cities for Children's Hospital that shows an elementary-aged girl walking with braces and a walker through her school, and the caption says: Pity - 100% Curable. How true!! Leah is one of the happiest, brightest and sweetest babies I have ever met. She is exactly on track with everything an 18-month old should be doing... except standing and walking. And who said that was the most important thing anyway? Yes, she's been through 3 major surgeries, and we have lots more to worry about. Yes, Ty and I went through a heartbreaking experience when we found out about her condition and we do probably have more to worry about than most parents. But that doesn't mean anyone should pity our situation. To be honest, the thing that has me more concerned lately is the fact that she wakes up at 5:30am and I'm freaking tired! How many other moms (and dads, but mostly moms) out there can relate to that??!!
The second thing that others should be aware of is that the child's wheels (or walker, or crutches, or any other kind of apparatus) is an extension of the child and should be treated as such. Her wheelchair is not a toy. We have let other kids "play" in Leah's zip-zac and try it out, but I question whether that was the right thing to do. As she gets older, her chair is literally going to be a part of her, and others should be respectful of that. Touching her wheels or trying to push her in her chair is kind of like pulling another child's hair. For now, her wheels are off limits to others, and as she gets older we can let her decide whether she wants to share them or not.
My third point is that it's ok to ask questions. I was at story time at the library the other day with Leah (as opposed to going there by myself, which would be a little bit creepy) and one of the other moms noticed Leah was crawling and dragging her legs behind. I could tell that she could tell something was off, and I really liked her approach. She made light of it and said, "That's an interesting way to crawl, why does she do it that way?" That opened the door to my sharing that Leah has SB and she asked lots more questions about it. I could tell that she was looking at Leah and I would have felt more uncomfortable if she didn't say anything at all and left wondering what was wrong with my child. I think it's very normal for others to stare at people who are different. Trust me, those who are different notice the stares. I could feel the stares at church after Leah had her shunt surgeries, so I'm very aware of it. As Leah gets older, she will be too. I guess what I'm trying to say is not to pretend the difference isn't there.
And finally, I personally don't hate the words disability or special needs. I know some people get really upset with those words but I try not to get too worked up with what's politically correct and what's not. Besides, they're true... she has a disability and she does have special needs. The word I hate is the "R" word (and you all know what I'm talking about), as well as anything that indicates she's less of a person because she can't walk. And that simply is not the case. Treat Leah - or any other kid out there who has a disability - the same way you'd treat anyone else!
So there you go, and again, this is the sentiment that is expressed by ME. I'm not speaking on behalf of any other parent out there (not even my husband, who may have his own opinion, though I try to keep that in check... haha, just kidding). I welcome other's thoughts and perspectives as well!
Tuesday, April 23, 2013
Sunday, April 21, 2013
Roller Girl
Last night we attended the Spina Bifida Roller Skating party. It was at an indoor rink that was reserved just for our group. We brought along Leah's zip-zac with the hope that she would get out on the rink and wheel herself around. When we first got there, she was a little apprehensive and wanted to be held. She wasn't too interested in getting out there with the other kids, so she sat and watched for a while. One of my mom friends has brought her daughter's little wheelchair that she had recently outgrown (and is the same one Leah will be getting soon). We tried Leah out in that chair and she went totally nuts! With the help of 2 big girls she spent an hour and a half rolling around with all the other kids. I've never seen her laugh as much and have as much fun as she did last night. It was truly a joy to watch. She was the youngest kid out there, though there were other little ones who were 2-3-4 years old. Once she saw everyone else out there in their wheels, she got it. She had never really seen anyone else in a chair before, so it finally clicked with her that the wheels will get her where she wants to go.
It was also a great night for Ty and I to see some of our friends and to meet new parents and families. At first it was kind of hard for me to see everyone in their chairs because it was another reminder that Leah will be different. But once I saw how much fun she was having, I realized that walking isn't the only way to be happy. And I felt such a deep sense of pride in her that at not even a year and a half she's figured out how to wheel herself around. Ty was talking to another family whose daughter didn't get into a chair until she was around 3, which made us thankful that Leah's been in her wheels since 9 months when we got her zip-zac. Here is a quick video of Leah out on the rink. It was pretty loud and the lights were turned down, so the quality isn't that great, but hopefully you can see her big smile! She was very proud of herself too!!
Monday, April 8, 2013
Working Hard
We are officially heading into our 6th month of winter here in Minnesota. Yes, you heard me right… 6 months of winter!! I heard on the radio this afternoon that we got our first measurable snowfall here on November 8 and we are expected to get a few inches tomorrow night into Wednesday. I am so sick of winter! They say that Minnesota has 2 seasons – winter and road construction. Considering we’re having snow this week and the main street in our little town is closed for the next 3 weeks to install new sewer lines, I’d say that’s about right!
Other than the winter that never ends, things are going pretty well around here. I haven’t posted much because there hasn’t been much to report. We had a very nice Easter, and Leah had a fun time collecting Easter eggs around the house. I filled a few plastic eggs with Cheerios and puff snacks, and those kept her quite busy at church. She has been having a lot of fun opening and closing the eggs, so I’ve kept those out. And she looked so ridiculously cute in her little dress. Having a girl is fun just because of the adorable clothes!
In the world of physical therapy, we are concentrating our efforts on getting her to learn how to turn her wheelchair. We work on that in PT and also at home, and she’s starting to get it. Just this morning she turned around with one hand and got herself unstuck from the kitchen cupboards. We’ve also been using her stander, though not as much as we probably would should… but I think we’ll start using it more now that she really likes being in it. The stander holds her upright with straps around her feet and knees, and then it has a vest that velcro’s around her tummy. She really doesn’t like it, so don’t do the straps over her shoulders, but she still pulls at the ones across her chest. So I figured I’d try standing her up without them altogether, and she did awesome. She liked it so much more! I have to wedge her between 2 ottomans so she doesn’t tip too far forward, and she still needs some of that support, but her upper body is really strong. We’ve been playing catch with her new ball and she also loves playing with her toys while having a little more freedom with her arms and being upright.
Leah’s big girl wheelchair has been ordered, and the process will take 2-3 months for us to actually get it in our home. We customized it for what we wanted and now it has to go to our PT doctor, then to insurance to process the claim, then back to the wheelchair company to actually make the chair for her. We tested a chair for about a week and then the wheelchair company rep came out to ask what things we wanted on Leah’s chair. As far as customization goes, we decided we probably didn’t need shoulder straps, so we got a belt to go around the waist and side bumpers to help with her balance. All of these can be changed out if she needs more support or less, depending on her needs down the road. Once she gets a little older, she may not need the side bumpers, so they can easily take those off. Of course we had to pick out a fun color for the rails, and it will be a sparkly silver… subtle but still girly. While I am very excited for this, it makes it very real that this will be her mode of transportation. Back when we found out about Leah’s SB, I kept saying I could handle a physical disability… now that it’s here, it’s a little hard to see it in real life.
As far as language skills goes, she still doesn’t have any real words, though she is getting better at doing a few signs. She can say “more” and “all done” very well. She knows please, thank you, milk and eat, but she’ll only do it when prompted. She says mama, dada, na-na, baba and is starting to make lots of other sounds, but nothing is directed to anyone or anything in particular. She does have lots of different expressions and makes all sorts of noises that I think mean, “oh my gosh what is that noise??!!” when she hears and airplane or train. Then there’s the “kitty kitty kitty kitty come here right now so I can pet you” sound, and the ear-piercing screech when she doesn’t like something. She is definitely communicating with us, just not with words, though I know that it will come soon. It has to, they’re all right there on the tip of her tongue!
She is learning and changing so much. It’s really fun to try and teach her new tricks because for now, she’ll actually do what we tell her. I also love watching her work really hard, and she constantly amazes us with what she CAN do. I’m so proud of her!
Other than the winter that never ends, things are going pretty well around here. I haven’t posted much because there hasn’t been much to report. We had a very nice Easter, and Leah had a fun time collecting Easter eggs around the house. I filled a few plastic eggs with Cheerios and puff snacks, and those kept her quite busy at church. She has been having a lot of fun opening and closing the eggs, so I’ve kept those out. And she looked so ridiculously cute in her little dress. Having a girl is fun just because of the adorable clothes!
In the world of physical therapy, we are concentrating our efforts on getting her to learn how to turn her wheelchair. We work on that in PT and also at home, and she’s starting to get it. Just this morning she turned around with one hand and got herself unstuck from the kitchen cupboards. We’ve also been using her stander, though not as much as we probably would should… but I think we’ll start using it more now that she really likes being in it. The stander holds her upright with straps around her feet and knees, and then it has a vest that velcro’s around her tummy. She really doesn’t like it, so don’t do the straps over her shoulders, but she still pulls at the ones across her chest. So I figured I’d try standing her up without them altogether, and she did awesome. She liked it so much more! I have to wedge her between 2 ottomans so she doesn’t tip too far forward, and she still needs some of that support, but her upper body is really strong. We’ve been playing catch with her new ball and she also loves playing with her toys while having a little more freedom with her arms and being upright.
Leah’s big girl wheelchair has been ordered, and the process will take 2-3 months for us to actually get it in our home. We customized it for what we wanted and now it has to go to our PT doctor, then to insurance to process the claim, then back to the wheelchair company to actually make the chair for her. We tested a chair for about a week and then the wheelchair company rep came out to ask what things we wanted on Leah’s chair. As far as customization goes, we decided we probably didn’t need shoulder straps, so we got a belt to go around the waist and side bumpers to help with her balance. All of these can be changed out if she needs more support or less, depending on her needs down the road. Once she gets a little older, she may not need the side bumpers, so they can easily take those off. Of course we had to pick out a fun color for the rails, and it will be a sparkly silver… subtle but still girly. While I am very excited for this, it makes it very real that this will be her mode of transportation. Back when we found out about Leah’s SB, I kept saying I could handle a physical disability… now that it’s here, it’s a little hard to see it in real life.
As far as language skills goes, she still doesn’t have any real words, though she is getting better at doing a few signs. She can say “more” and “all done” very well. She knows please, thank you, milk and eat, but she’ll only do it when prompted. She says mama, dada, na-na, baba and is starting to make lots of other sounds, but nothing is directed to anyone or anything in particular. She does have lots of different expressions and makes all sorts of noises that I think mean, “oh my gosh what is that noise??!!” when she hears and airplane or train. Then there’s the “kitty kitty kitty kitty come here right now so I can pet you” sound, and the ear-piercing screech when she doesn’t like something. She is definitely communicating with us, just not with words, though I know that it will come soon. It has to, they’re all right there on the tip of her tongue!
She is learning and changing so much. It’s really fun to try and teach her new tricks because for now, she’ll actually do what we tell her. I also love watching her work really hard, and she constantly amazes us with what she CAN do. I’m so proud of her!
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