Sunday, October 18, 2009

Halloween Woes for Special Needs Parents: A Primer on How to Enjoy Halloween with your Special Needs Child

Dear Son, Age 3.5, Scarecrow

The Disabled Kid’s Keeper writes a blog post regarding dressing her special needs child up for Halloween at school. Apparently, a letter was sent home from school asking the parents to dress the kids up and then telling them that after the parade at school, they were going to take the special needs children to a local Senior Center, where they would have a parade for the seniors. It’s her child’s first year of school and she doesn’t feel like dressing the child up since she doesn’t think her kid knows what is going on. Second, is the issue of parading her child at the Senior Center so they could be “pitied”. She is disgruntled because the “regular” kids don’t get paraded at the Senior Center so why should her child?

Posts like this make me sad. I know all too well that these kids grow up really fast and if you don’t enjoy their time when they are young, you don’t get a second chance. Second, you know that I really enjoy dressing Dear Son up for Halloween so it makes me kind of sad to think that the Mom will be missing out on this as well. While I love seeing Dear Son all grown up, I really miss getting him dressed up for Halloween and dreaming up those costumes! As a matter of face, I loved creating the costumes so much, that I always thought that I would love to create costumes for Special Needs Kids at the hospital, so they could dress up and get their pictures taken to celebrate Halloween.
Dear Son, Age 1, at Grandma's as an M & M


But stepping back, I do understand where she is coming from and why she might feel that way. Perhaps the best analogy to illustrate my perspective is this…Many years ago when I worked full time, a consultant was brought in from Organization Development to work with our department. At the time, I was a Relationship Manager for a healthcare software vendor and my role was to establish and develop relationships with “C” level executives so that they would purchase our company’s products and services. As a result, it was important for us to understand everyone’s perspective at the different levels of the organization since my role was to understand not only the client’s strategic IS plan but I had to understand the political climate as well. To illustrate the importance of understanding others perspective, this consultant used the example of a mule pulling a wagon. There was one person in front on the wagon and several people sitting on the wagon, each facing a different direction. So let’s say the one person on the mule was facing north, the others were facing east and west and the one in back facing south. We were told to imagine what each of them might see based on their position on the wagon. So the one on the mule was looking forward and could see where they were going. The one on back, couldn’t see what was ahead but only where they’d been. The ones on the side, couldn’t see what was ahead or behind, only where they were currently at. That’s a lot like what the Disabled Kid’s Keeper is at…she can see only where she is now. Having been there, I can offer her a different perspective based on where I have been, to give her a different perspective. Notice I didn’t say her perspective is in any way wrong, because I feel each parent of a special needs child’s feelings are valid, I am just saying that there is a different way to look at the same situation.

So why should she dress her child up? What benefit will it have for the child? What is the benefit for the seniors at the Senior Center? I can’t speak for her but I can give her a different perspective, the one I had with Dear Son.

Dear Son, Age 4.5, Cat in the Hat

Dear Son started school when he was three years old. He had physical, occupational and speech therapy when he was around 18 months old, or maybe sooner. I really don’t remember. We sold our house and moved to a different state so he could get in at the Easter Seals and then start school when he was three years old. I remember how scary it was, putting him on the little yellow school bus, when he didn’t know a soul. I remember how I worried about what might happen to him and how he wouldn’t be able to defend himself. I certainly didn’t know much about the whole special education process so everything was not only new but seemed like a blur. Heck, keeping up with the medications, the therapies, caring for Dear Son, working part time, being married while Dad worked midnight so I could work the day shift, well, you get the idea; everything was difficult. Nothing we did seemed easy.

Dear Son, Age 5.5, Chef

I remember when Dear Son was little, that there were odd gaps, things that he didn’t piece together and things that I didn’t really understand. For example, we ducks that came up to feed outside of our patio doors (our yard backed up to the pond), and although they would come right up to the window and he’d be looking right at them, it was like he never even saw them. There were so many examples of things like this, that you never knew, what if anything, that he was processing. School tests weren’t much help either…there were many times it was difficult to measure Dear Son’s abilities because his physical deficits were so great (he had no use of his hands or arms, etc.) that they had trouble measuring his mental capacity. There was always that debate among the professionals…did he know what was going on or did he just not do the assigned task because it was too much work for him. As many questions as they had, I had some too. It could be downright scary to look too far into the future; it was the big, bad, unknown future and who knew what that might bring. Of course the feat of the future was always the same…would our kids do something that we couldn’t handle?

As difficult as the early years were, I remember exactly the age that everything came together for Dear Son. He was ten years old and it wasn’t until he went to a daycare center near our home that he finally began to spend 100% of the time in “our” world. Prior to that, I never really knew how much he understood, or what he could really process. The teachers and therapists would always stress repetition but as a mother, you wondered if they would ever “get it”. I was working full time and found a daycare center close to home that agreed to give Dear Son a try for one week. If at the end of the week, he was too much trouble, they would refuse to take him. It was only for two hours each day, from 3:30 p.m. to 5:30 p.m that he would be there, but still. After the first day, the owner said it would not be any problem and that he fit right in. (He was and is the only disabled child they ever took at that center.) He loved the kids there and all of the action. He’d have these big old belly laughs there or he’d get to sit in the dirt hole and play but whatever they did there, he had fun. That was the turning point when I think he preferred to spend more time in our world and eventually, none in his little world. But it took ten years.

But none of this would have happened, it he didn’t have all of the experiences all along. You never know what experience or what clicks for them and you have to give them all of these opportunities. It’s all part of the learning experience. I have always believed that for Dear Son, his education consisted of many parts-there was the school experience, his therapies outside of school, what he learned at home, etc. There is no one place for all of his learning to occur. Also, you can’t expect that the first time they do something new, that they are going to get it. It might take a couple of times before it all comes together. No big deal really. If you think about it, we do things that are new to us and we don’t always get it the same time. But everything doesn’t have to be about whether you get it or not…sometimes, it’s about getting out of the house and doing something new.

Second, you have to accept who they are but not let it define you or define them. Yes, Dear Son is special needs but we were determined to enjoy Halloween like everyone else! I made costumes for him, took pictures of him in his costumes and thoroughly enjoyed it. Now, I had to do things differently than other people but we still had a great experience. For example, I’d get Dear Son dressed up for Halloween and then I’d feel funny about taking him out Trick or Treating in the neighborhood. I’d purchase candy to give out to the neighborhood kids and Dear Son might sit near the door when I did that. After all, if he couldn’t eat the candy, what was the purpose of going Trick or Treating? But that’s not the point. You don’t go Trick or Treating to get candy for your kids. Heck, you can buy your kids their own candy. You go Trick or Treating because it’s fun to get the kids dressed up. It’s fun to see the other kids costumes. It’s fun as parents to see how beautiful, cute and sweet your kid is all dressed up. You take your kids to the door, not for the candy, but to hear the parents and people answering the door “ooh and ahh” over your kid’s sweet face and cute costume. You see your neighbor’s kids and your neighbors walking around the neighborhood and you all laugh and comment at how cute all the kids look. Basically, you just have fun! It’s these types of activities that bonds us as a community and as family. To not take your kid out on Halloween is missing out on the holiday for them AND for you! Having a disabled child does not mean the child should not be seen or heard! No, they should be taken out and enjoyed like all of the other children! Dear Son without his front tooth, Too cute!

Now then, while I did dress Dear Son up for Halloween, I didn’t always take him out in the early years. One year though, the weather cooperated and we went out. I felt odd taking a plastic pumpkin (aka Trick or Treat bag) up to these homes to get candy for him. He had a cute costume on that year as he was the “Cat in the Hat”. This was Dad’s favorite costume. Anyway, Dear Son had a communication device that he operated with his feet. I tied the communication device to his wheelchair footrests and programmed it to say, “Trick or Treat”. It was not only a lot of fun but it was great therapy to have Dear Son pressing that communication device over and over again with his foot. What great practice! Now timing, was another thing! I tried to have him wait until the people answered their doorbell but he’s start hitting the communication device with his foot as we walked up the driveway. And people just loved him! They’d see him and comment on his costume and give him ten times the amount of candy that they’d give the other kids. I’d have to explain that one was more than enough since he didn’t eat candy but they didn’t care. I had an awful lot of candy to give out at my house as a result of that! So my point is that you do this for you too! It’s all part of being part of a group, being part of a community and being part of life!
Dear Son, Age 10.5, Jack in the Box


Then, the whole thing got out of hand. Once I got into this Halloween costume making thing, a light bulb went off and I realized that I could use the wheelchair as a cool and awesome prop to make bigger and better Halloween costumes. One year he was a chef and the wheelchair tray held his bakery creations. One year he was the ‘Jack in the Box” and I built the box around his wheelchair. The only bad thing was that by the time I figured this out, he was getting too big to go Trick or Treating!

Now then, the other issue she raised was that she didn’t want her child “paraded” around the Senior Center when the regular kids were not. Yes, I understand where she is coming from however I hope when I am old and in a Senior Center, someone brings around the Special Needs Children for me. After having Dear Son, my heart and mind have been enlightened. Where I once struggled to see the beauty in these children, I see nothing but the beauty in them. Their hearts are pure, their struggles are so great and life doesn’t seem fair. I can’t help but get teary eyed when I see them because I wish things would be easier for them. I pray every night for all the special need children in the world as well as for their parents, their care takers and the doctors, nurses and medical people who care for them directly. I know it takes a village to raise these kids and no one can do it alone. But I can’t help but think of the joy in those seniors when they see these special children, dressed up in their cute little Halloween costumes. I see myself in these women someday. I see a day when seeing a special needs child all dressed up for Halloween will be the highlight of my day. And for that reason, I think she should dress up her child for Halloween. Don’t take away that special day from the seniors. They may not have much to look forward to and if they invite the school kids back every year, the seniors probably enjoy it.

And finally, sometimes we have to do things a little differently than other people, but that doesn’t mean the holidays can’t be as fun. Here are a few tips on celebrating Halloween with a special needs child:

  • Start early. I’d decide early what he would be for Halloween. I usually preferred to make them since I thought they looked better. One requirement was that they had to be warm, since I didn’t want Dear Son to get cold.
  • Have a dress rehearsal. I have cute pictures of Dear Son for Halloween but most weren’t taken on Halloween! I’d dress him up and take them a few days prior-that way I didn’t have the pressure of trying to get a great picture before the school bus drove up. I’d take a ton of pictures, hoping to get a few good ones.
  • Have everything set up for picture taking (meaning the background or chairs or whatever) so when you are ready to take the pictures, you can work fast. Often, Dear Son couldn’t sit very long or he’d slobber so I had to take the pictures fast, before he’d tire out. Of course, now we have photo shop, so it’s much easier to erase drool from a shirt! And if they drool, so what! Do you think every family has perfect pictures except for you special needs child? Don’t expect you or your kids to be perfect. This isn’t a modeling shoot, it’s a fun, childhood experience!
  • Learn to use the wheelchair as a prop for costumes. For example, if you have a boy, you can have your child be a soldier in a jeep, putting a box over the wheelchair and making a jeep. I wanted to do this for Dear Son, but he got too old! Of course, I’d take those pictures in the woods (We actually had a walking trail near our home that would have been perfect!) Or he could be a fireman in a fire truck-again using the box over the wheelchair and painting the box red. You could glue on a light, add a bell, put a wooden bed rail on the side of the firetruck as a ladder, or simply paint a ladder on the truck. You could add a dalmation or fire dog on the truck as well. For a girl, she could be Cinderella in her carriage. You can do the same thing, putting a box over the wheelchair and making it a carriage. The key is to find a picture of something you like, then re-creating it as best you can and elaborate or embellish it to stand out.
  • Give yourself some time to make the costumes. If you are going to make a costume or let’s say a fire truck, as in the example above, start a week in advance. The hardest part is measuring the wheelchair and getting a box to fit over the wheelchair. Be sure to give yourself time to get the box. It took a week before we could find one for the “Jack in the Box” costume. The problem is that you need the box to be long enough to cover their legs the wide enough to go over the width of the wheelchair.
  • Costumes that don’t work for special needs are the following: anything that is too fussy, anything with a mask or anything that is too stiff. For example, a tin solder is not a good idea for a special needs child. The kids can be floppy and it’s not the best choice. A better choice is a rag doll if they are floppy. Use your child’s body type and disabilities to “accent” the costumes. Use make up on their face instead of any mask. For example, when Dear Son was the chef, I purchased a moustache for him to wear thinking it would be funny. Well, it didn’t stay on so finally, I drew one on him with an eye pencil. He looked really cute and it was far better than the one I purchased.
  • Costumes that do work for special needs kids are ones that match their body type or their disabilities. For example, when Dear Son was ten, he was fairly skinny. So that year, I made him a “Tin Man” costume from the Wizard of Oz. I made it out of poster board and aluminum foil. It was a great costume because he was so skinny. If he was husky, it wouldn’t have worked.
  • Costumes for kids should do one of two things: Make you laugh (the creative ones). Make you smile (because the kids are so cute).

Dear Son, Age 8.5, Tin Man from the Wizard of Oz!


So in the end, it doesn’t really matter if your child is special needs or not, at least for Halloween. You might have to do things differently, but that doesn’t mean it can’t be any fun. And if there is anything I have learned from Dear Son, it’s that when I am having fun, he is too. And that’s the best reason of all to celebrate any day, let alone any holiday.

12 comments:

The Keeper said...

It's great to see another way of looking at it, and your son looks happy and cute in his costumes. Your creativity is amazing! The pictures are really great and wonderful to see. Thank you for sharing them.

CupHolderGuy said...

Hello,

I came across your site from a Google alert for "wheelchair". Since my product's blog is related to this, and because Google is fond of content related links, I was hoping you'd be interested in a blogroll link exchange. This is where I link to your site, and you link to mine.

For examples of this (under the "Blogroll" category on the right side of my blog), for more information on my product/blog, or to contact me, please visit http://oh-4.com/blog .

Thanks in advance for your consideration.

Jeff

PS I saw this on another blog, but one wheelchair user was dressed as Darth Vader, but had added wings to his armrests, making his chair look like a TIE Fighter. Was pretty cool, but I'm a Star Wars geek.

Catherine said...

I read the same post that you did, DreamMom and had the same reaction that you did. It's a tough go on how to treat non typical children in a school. You have to weigh the "special" treatment against the regular fare in planning activities, and still someone gets insulted.

I know of small groups of kids who do visit the senior center for a number of reasons. I, too, would find it a joy to be visited. Also I dressed my kids for Halloween and other events long before they knew what was happening, and if they never were able to figure it out, I would still include them in the dress up with kids their age.

I love Dear Son's costumes. I enjoyed my kids' costumes as well as other kids' and I still do. Now that some of them are teens and young adults, their costumes are not so appealing for such events.

Claire said...

Guess you gotta like Hallowe'en to begin with.

Canucker said...

What great costumes!! I had lots of fun dressing Joe up for Halloween too. One year he was a clown, another year Mickey Mouse and my favorite costume of all was when he went as a decorated Christmas Tree - complete with tree top and battery operated lights!

We also had a hard time knowing how much Joe was learning/understood and like you did with DS, had a "AHA" moment with him.

He was in his teens and we were in the waiting room for a neuro appointment. To kill some time, we started looking at some magazines together.

Found one that had lots of pics of pretty girls (which Joe loved). I opened up the magazine, put it on his wheelchair tray and asked him "Joe, where is the pretty girl?" not really expecting a response.

Well, didn't he lift up his arm and swat the page with the pretty girl!!

Hmmm, I thought. Did he do that on purpose?? Turned a couple of pages, and found one with a girl on one side and on the facing page, an ad for a car. Again I asked him "So Joe, where is the pretty girl on this page?" He looks at the picture, lifts up his arm and deliberately swats the girl again.

Now, I'm getting excited. I decide to really test him and headed for a page that had NO girls. Just an ad for a car on one side and text printed on the other. Ask him "Where is the pretty girl, Joe?" He gives me this "Mom, don't be stupid" look and doesn't raise his arm.

Turn the page to another one with a pretty girl and yes, Joe swats the correct page again.

Up until that day, I thought Joe might understand more than he was getting credit for. That day, he proved it to me.

Always enjoy your insight, Dream Mom!

Canucker

Holly said...

Dream Mom, longtime lover of your site. I have lots of respect for you and Dear Son. I am a special education teacher in the early grades and work with many students like Dear Son. I loved and completly agree with your post. i wrote a rather lengthy response (it sort of took on a mind of its own)on your original topic's blog. I would be interested to know what you think of my point of view seeing as I am on the "school team" side of things. I respect your opinions and they way you encourage parents to enjoy their children for who they are. Best of luck to you on your soon to be amazing trip!

Thimbelle said...

I always look forward to seeing Dear Son's costumes in your posts - you are so creative and clever, and he always looked so adorable!

I didn't read the original post that sparked yours, but if I could, I would tell that mom this: Maybe... just maybe that the special needs gets are going to the Senior Center is twofold. First, because (as you so correctly identified) many seniors have disabilities and health issues of their own. Seeing the kids - so young and yet engaging in a "normal" activity - might be inspiring and uplifting for the seniors.

Secondly, the kids get to parade again - a second time! How cool is that? The other kids have to go back to school, back to work, but her child gets to have an extra "treat", and go participate in a *second* parade! I think it's great - so often, the reverse is true - the "normal" kids get to go do outside activities and field trips, and the "specials" get left behind.

Thanks again for sharing DS in all of his costumes - every one of them is just adorable! :)

Dream Mom said...

Thank you for all of the comments.

Holly-I thought your comment was good; it is always good to hear about activities from a teacher's perspective. Learning can be slow going with these kids sometimes. I liked your comment about them seeing other people with disabilities. I know my Dear Son especially likes it when I tell him stories of how I danced with a boy in a wheelchair or things like that. We all like to be accepted for who we are and it's good for them to see other people like them.

Canucker-I love your stories! How sweet that Joe was able to pick out the pretty girls. DS loves the pretty girls too and it's amazing how many e-mails I get from other Moms who tell me their disabled boys love looking at the pretty girls. DS is a little more obvious...he stares at them until they notice him and if they don't, he starts making noises so they'll look at them. When they do finally look, he'll smile. LOL! One reader of my blog, Mary, has sent me e-mails telling me about her son, when he sees a pretty girl he'll say, "Pretty girl, Mom". And more than one parent had said that they can see how boys are hard wired "visually".

I know not everyone likes Halloween and that's o.k. Thank you "Keeper" for being a good sport and allowing us to give you different perspectives.

The Keeper said...

I feel like saying, "Tag, your it!" but I do feel your blog is very noteworthy and I award you as seen on my most recent blog post.

Thank you, Dream Mom.

Anne in NY said...

What fascinating insights, as always, Dream Mom. I imagine the notion of one's child "being paradeded around" is troubling...but the way you explain it, you get right to what really matters, which is the pure joy ALL children can experience from the fun of being in a creative costume. I can just imagine the joy of both seniors and children with all the delightful fuss of a Halloween costume parade!!!!

I remember seeing some of your Halloween photos of Dear Son in previous years, and I'm so glad you brought them out again. My favorite is the chef costume, with that adorable little twirly moustache! He clearly has such joy in the experience and every kid loves to ham it up for the camera.

One of the things that is so valuable about your blog is that, while it's always clear how difficult life is for Dear Son, there are so many things he has in common with all kids. You point those things out, and we are all the richer for it. As always, thank you!!!!!

Anonymous said...

I want to add one more "tip." I am a crafty person and have had the privledge of making several costumes for friend's children.

So, if you feel overwhelmed at the idea of making a costume, as around. Some of us are always looking for a great project!

Donna Karis said...

I found your blog through a search and I'm closer to your end of the spectrum. My special needs son is 20 now and I wanted to write about the transition from Trick or Treating to adulthood.

Haven't started my post on that yet, but here is my blog
donnakaris.blogspot.com.

I would be happy to add your link to my blog. Would you do the same for me?

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