Friday, October 30, 2009

Restrooms for Severely Disabled at O'Hare Airport? Do they exist?

We continue to be excited about Dear Son's upcoming Make a Wish trip to Disney World. I spent some time yesterday planning for the trip however there is one issue I can't get resolved. I've written before about my concern for our plane ride to Orlando. My biggest concern is that I will need a place to change his diaper before boarding the plane. We will be boarding an early flight and leaving our home at 5:15 a.m. for the airport. Prior to that, I will have to give Dear Son his formula via his feeding tube and his seizure medications. At some point, I will have to change his diaper prior to boarding the plane. Once I change his diaper, then he should be able to make it on the plane ride without going to the bathroom. I will be bringing changing type pads to set on the seat so if he does have an accident, that the airplane seat won't get wet. My problem is this: no one can tell me where I can change him.

We are leaving from O'Hare International Airport, the busiest airport in the United States. I contacted United Airlines today and explained the situation, that I have an 18 year old male, who is severely disabled and I need a place to lie him down to change him. I was told that "there isn't any such room like that to change his diaper and that he "must" use a restroom." That was unacceptable. Dear Son can't use a restroom because he is disabled. He can't stand up and I use a hoyer lift to lift him up. He can't sit up well enough to even sit on a toilet, let alone let me know when he needs to go. He is not toilet trained. A typical handicapped bathroom is not adequate. I need to lie him down to change him. Ideally, I'd like a large restroom with a bench in it to lie him down on. Something like a family restroom. I am looking for a cot to lie him down, someplace with some privacy to change him. This should not be an issue in 2009 nor an issue for the world's busiest airport.

I asked to speak to her supervisor. I got a young man who told me that, "there should be someplace there to change him" however when pressed, he didn't know where that was. I asked him to check for me and he contacted the agent at O'Hare who said that they don't have a "specific area" but that there were bathrooms for disabled. I said that we can not use a handicapped bathroom since he needed to lie down and he said to, "just check when we get there". I explained that I needed to check now since I can't wait until the last minute. He had no other answers.

Prior to this call, I had tried to find answers on United's website. There were none. I tried to submit a question however it only accepts questions for "past" flights and the form won't allow questions on future trips or anything else as it requires you to input flight information from past trips to submit the question. They recommend you contact United at their 800-864-8331 for questions relating to upcoming trips, which is what I did. That isn't a great system however because you can't speak with anyone from customer relations, you can only speak with a reservations agent no matter what you say in the automated prompt menu.

I googled contact information for United Airlines and found an on-line form to submit an e-mail question and did that today. It came back as undeliverable with a failure message.

This is 2009. Dear Son just needs to go to the bathroom like anyone else does before his Make a Wish Trip. Some people have suggested not feeding him so he won't go the bathroom however how mean is that-taking him on a Make a Wish trip and then not being able to feed him so he won't urinate? That doesn't make any sense and no I'd never do that. I've written before on the restroom issue facing the disabled. We tried to go to a movie a while back and had to leave in the middle of the movie because there wasn't a place to change him.

Ideally, what we really need at airports and the like is simply, a family washroom large enough to get in a wheelchair and with a bench of some kind to lie him on, I could change him. I know that this washroom would be used by fathers who take their daughters in to be changed, mothers of kids in diapers, disabled children and the like. This isn't a new issue however. The Great Reporter wrote an article back in 2007 talking about accessibility and family restrooms for the disabled. You can see that article here. They state,

"Family restrooms have started appearing in more public buildings. Will these restrooms one day lead to the elimination of gender-specific bathrooms? Most states now require family restrooms, places where parents or caretakers can accompany members of the opposite sex who need help in the bathroom, in any new facilities, especially stadiums and parks."

They even reference O'Hare Airport as having family washrooms in Terminals 2 and 3 however those restrooms do not have a place to lie down Dear Son. If anyone has used this airport and knows of a place to change him, it would be appreciated. If you have any contact information, other than the main number for United, it would be appreciated. I checked with the Make a Wish Organization and they said that I'd have to contact United because they didn't get an answer. Please understand we are very appreciative of our Make a Wish Trip and just need to use a bathroom like anyone else. You can imagine that our fellow passengers would appreciate it if we can change him prior to boarding the plane as well.
Note: Dear Son is seventeen years old and suffers from a progressive neurological disease, seizures and severe mental retardation as a result of a random mutation of the ARX gene.
FYI: Since my previous post, I did get an answer to the ear popping issue with the changing altitude. Since Dear Son can't swallow or yawn to pop his ears, the neurologist suggested giving him an antihistamine a few hours prior to our flight to help with this issue.

Friday, October 23, 2009

"Universal" Gardening: The Enabling Garden at the Botanic Gardens

This photo is of Dear Son, a teacher from the other classroom, and his aides at the Botanic Garden.

Universal gardening, or accessible gardening, is something that makes gardening easier for everyone. This week, Dear Son's class went to the Botanic Gardens to visit the "Enabling Garden". The hands-on teaching garden was created to showcase ways people of all different ages and abilities can garden. It includes vertical gardens, sensory plants and smooth brick pathways making it easier for people in wheelchairs. The "Enabling Garden" featured many adaptive tools and models to illustrate gardening techniques that make gardening easier and more enjoyable. These features include:
  • Raised Beds
  • Hanging Baskets
  • Walled Gardens
  • Shallow Pans
  • Raised Water Features
  • Scenic Overlook
  • Discovery Cart
  • Tool Shed
  • Smooth Brick Pathways
What I especially enjoyed about the enabling garden is that these features aren't limited to people who are disabled; these features can be enjoyed by everyone. As a result, I prefer to call it "universal" gardening to highlight the fact that these features are good for everyone. Universal Design is a term to describe designs that are accessible for everyone. I'd like to think that "universal" gardening would be the same. So what exactly makes this garden accessible or universal?
One of the teachers is trying to push Dear Son up the hill at the Botanic Garden and is having a hard time which makes Dear Son laugh.

Colorful, dramatic, raised garden beds are one of the highlights of this garden. As any true gardener will tell you, back aches or aches in general are easy to come by when you garden. Long stretches of kneeling and bending can be challenging and increase in difficulty as you get older. Raised beds solve this issue so you don't have to bend down as much. When I had a home a few year back, gardening was my main hobby. I would easily spend eight hours or so putzing around in the yard doing everything from planting, edging, mulching, turning the mulch, pruning, weeding and just about anything else I could think of. I'd used those garden kneezies (a foam pad that you lie on the ground to cushion your knees when kneeling to garden) to make it easier. I absolutely loved it. By the end of the day however, you have had a workout and I can see how the raised garden bed would make that easier.

This photo is of my former home where I loved to garden.

Hanging Baskets-At the enabling garden, they showcase hanging baskets that raise and lower on a pulley type chain. This allows the user to raise and lower the hanging basket for watering.

Walled Garden-A walled garden is used to illustrate the concept of vertical gardening. Vertical gardening brings your plants and flowers up to eye level or off the ground making maintenance easier.

Shallow Pans-Shallow pans are raised beds that aren't very deep or wide. The depth allow you to get a wheelchair closer to the bed and the fact that they aren't as wide allows a person in a wheelchair to water all of the plants without having to lean over very far.

Raised Water Features-Keeps the water features at eye level making them easier to see for disabled individuals as opposed to water features on the ground. I can see this feature making it easier for people with a "vertical gaze palsy". Dear Son has difficulty looking up and seeing things that aren't straight out in front of him.

Scenic Overlook-Allows the user to look out over the garden.

Discovery Cart-This feature at the garden allows wheelchair users to pull up to a special cart to explore gardening tools.

Tool Shed-Filled with accessible tools to make gardening easier.

Smooth Brick Pathways-Having a smooth brick pathway is essential for people in wheelchairs. When Dear Son was a child, we had a wooden swing set in the backyard and it was very difficult trying to push the wheelchair over the grass to get there. When the ground was slightly wet, it was even more difficult. A brick pathway would not only make it easier but would look beautiful too. While I didn't visit the enabling garden, I would imagine that the brick pathways would need to be at least three feet wide, which is a standard width for pathways and sidewalks. This would allow adequate room to push a wheelchair. As always, a five foot wide area would be required for turn arounds or to turn the wheelchair around. A pretty brick circle design would be a wonderful visual element in a garden.

Dear Son had a fabulous time. He really enjoys plants at school and I am always amazed at how much kids with disabilities notice the scent of a plant. At school, they do a lot with plants. They take the kids out into the community (Home Depot) to purchase plants, soil and pots. At school, they decorate the flower pots then plant the plants. The plants are then distributed to teachers in the building. The kids are assigned plants to water in the building. Two days a week they water the plants to help them grow. Watering the plants help them with their occupational therapy. Dear Son has a special water bottle (think sports bottle with a flexible spout) that he uses. The therapist puts the water bottle in his hand and has one hand over Dear Son's hand on the water bottle and the other hand on his left arm (Dear Son is left handed.). When the therapist feels a slight movement in his fingers, she helps squeeze the bottle to help him water the plant. This helps Dear Son since she gives his brain time to relay the message to his fingers to move them and this is a higher concept or a little higher functioning than just putting her hand over his and helping him squeeze the bottle. Dear Son also enjoys reading books about plants on the computer at school. He has a switch set up so he can take his head and hit the switch to turn the pages, so to speak, on the computer. He really enjoys it. Yesterday, they purchased some lemon grass at the store and he enjoyed smelling it. It's nice how they use many of their senses in learning about plants. One of Dear Son's favorite things however is when they put dirt on his tray and he gets to put his hands in it. That's how you know he is a real gardener!

Wednesday, October 21, 2009

Awards: One Lovely Blog

A special thanks to the Disabled Kid's Keeper Blog for these lovely awards. She writes a blog and says those things that many people wish they could say. She also can be quite funny. My favorite post is here where she contemplates checking the "four pose" box for school pictures then decides that it wouldn't be nice to mess with the photographer for four poses of the disabled kid.

As part of the award, I have a series of questions to answer with only "one word" answers. For me, that's the blogger equivalent of tying my manicured hands behind my back, but I'll do my best. So here goes:

1. Where is your cell phone? Charging
2. Your hair? Highlighted
3. Your mother? Alive
4. Your father? Deceased
5. Your favorite food? Filet Mignon
6. Your dream last night? Sexual
7. Your favorite drink? Tea
8. Your dream/goal? Dear Son could talk.
9. What room are you in? Living Room
10. Your hobby? Tablescaping
11. Your fear? Obama (Federal Deficit, Healthcare Reform)
12. Where do you want to be in 6 years? Married
13. Where were you last night? Home
14. Something that you aren't? Patient
15. Muffins? Homemade
16. Wish list item? Chandelier
17. Where did you grow up? Suburbs
18. Last thing you did? Paint
19. What are you wearing? Shorts
20. Your TV? Flat
21. Your pets? Cat
22. Friends? Lots
23. Your life? Good
24. Your mood? Happy
25. Missing someone? Sister
26. Vehicle? Used
27. Something you’re not wearing? Shoes
28. Your favorite store? Jewelry
29. Your favorite color? Pink
30. When was the last time you laughed? This morning.
31. Last time you cried? Don’t remember.
32. Your best friend? Funny
33. One place that I go to over and over? Arboretum
34. One person who emails me regularly? Dana
35. Favorite place to eat? Near a fireplace.

As for nominating someone else, it's too hard to choose-so many wonderful blogs!

Thanks again for this lovely award.

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.

Saturday, October 17, 2009

Make a Wish Trip!

Our Make a Wish trip itinerary arrived in the mail today! Yay! It won't be long now until we leave for Disney World! Only a few weeks away.

Our Make a Wish trip includes:

  • Round trip limousine pick-up with a wheelchair van.
  • Round trip tickets to Disney World for Dad, Mom and Dear Son.
  • Lodging at the Give the Kids the World Resort.
  • All medical equipment and supplies delivered to our room (hoyer lift, IV pole, diapers, wipes, bed pads, formula).
  • Passes to the Animal Kingdom, Universal Studios, Islands of Adventure and Seaworld.
  • Meeting with Barney! Dear Son loves him!
  • Extra money for meals, souvenirs and travel.

We are going to start planning our days now with the various activities. Let me know if you have any other ideas. I printed off all of your comments previously so we'll plan from there. I've been keeping a file of things to do and things to take. While most people keep a travel list, I had lists created of, "Things to take to the Hospital" so this list will be a great starting point for our travel list. I expect to complete our travel list in the next week. It's been over ten years since Dear Son and I have had a vacation so I am really looking forward to this trip. Dear Son's life jacket arrived this week, courtesy of the Make a Wish Organization.

This will be his Dear Son's first trip on an airplane. It should be exciting!

A special thank you to our wish grantors, Angela and Laura for giving our family a trip to remember. We also need to thank our Make a Wish Coordinator, Courtney, for all of her help these past few weeks. Your hard work is greatly appreciated. We all look forward to some sun and fun.

Monday, October 12, 2009

Dear Son Medical Update

It's been a tough few days for Dear Son. As I mentioned, he had a bad seizure Thursday morning before school. After administering Diastat (a rectal Valium), the seizure stopped but he slept most of the day. He was awake for around two hours or so that evening, but that was it. He continued to have difficulty on Friday, Saturday and Sunday. First, he choked on his saliva a lot at night as the secretions are getting extremely difficult to manage. There seems to be a correlation between the increased seizure activity and the secretions; when seizures increase, secretions increase and therefore it's harder for him to manage. It's not only the swallowing that is difficult for him, but he is pretty weak and has trouble coughing. While the Diastat could have supressed the coughing, I really think the weakness in coughing is linked to increased deterioration.
In addition to the secretions, he has slept basically the entire time since Thursday. He opened his eyes briefly over the last few days but seemed to be having a lot of seizure activity. I did try moving him to the living room and putting him in the recliner however he never really woke up.
Today, he seems a little better. His eyes are open, he is coherent and while he is still sleeping somewhat, when he is awake, he is happy and is aware of what is going on. I spoke with the doctor on Friday and they increased his medication so maybe that is kicking in a bit. We are also trying a new extended release version of one of his seizure medications so hopefully that will help him a bit.
Tomorrow he returns to school. I am hoping that as long as he does well today, he should be able to go tomorrow. We follow up with the doctor later this month.
*Congratulations to Angela Doyle, one of our Make-A-Wish sponsors. She finished the Chicago Marathon yesterday; she ran it for Dear Son. She finished the race, along with several others from the Chicago Make-A-Wish Team, then flew back home. We appreciate her support.

Thursday, October 08, 2009

Make a Wish Trip Update

A few of you have been asking for an update on our Make a Wish Trip to Disney where we will celebrate Dear Son's birthday. Up until now, I haven't had any information however earlier this week, the Make a Wish (MAW) coordinator called to give me a status update on our trip. Apparently, everything is in order and she'll send me the final itinerary at the end of this week or the beginning of next week, then we should be good to go.
During our call, we also discussed swimming for Dear Son. Since they didn't have life jackets at the Give the Kids the World Resort, they offered to purchase a life jacket for Dear Son and have it shipped to our house. I selected one with a zipper so that it would stay secure on Dear Son; I didn't want any issues like we had this summer in summer school. She was then able to order one like that for him and we'll receive it in the next few days.
She also ordered all of the medical supplies we'll need for the trip. At our initial meeting, the MAW people offered to order all of Dear Son's supplies, so we won't have to pack them in our suitcases. This is fantastic since the supplies would have taken up two large suitcases, let alone be over the weight limit. They have ordered all of his formula, diapers, wipes, changing pads for the bed along with a hoyer lift and IV pole. That way, we don't have to take any of that along. I hadn't even thought about that but since they offered, I let them do that. The only things we'll need to take for Dear Son are his wheelchair, feeding pump and all of his medications for the week.
In addition, they are trying to set up a "Meet and Greet" with Barney for Dear Son. He really loves Barney and I am sure for those of you without a special needs child, that may be hard to understand. Barney was Dear Son's favorite toy for many years. It was the only toy that he could activate himself. Dear Son never had use of his hands/arms, couldn't walk, couldn't sit up very well on his own and well, when you can't do that, there aren't many toys for you to play with. When Dear Son got Barney for his sixth birthday, he immediately took to him. He could activate Barney by biting on his hand and Barney would talk to him. He could also take his foot and press on Barney's foot and he would sing. There aren't a lot of toys for severely disabled children, like there are for regular children, so for that reason, Barney is very special. At the Pediatric Neurologist's office there is a poster of the Velveteen Rabbit with a phrase that says, "When you love something long enough, it becomes real." That would describe Dear Son's relationship with his beloved Barney.
We are also thankful for our wish grantors/sponsors. We have two women that are responsible for granting or sponsoring our wish. Over the past few months, I have become friends with one of them. Angela Doyle is one of our wish grantors and she has worked tirelessly over the past few months raising money not only for Dear Son's wish but for other children as well. She and her wish granting partner grant three to four wishes a year. They will be granting Dear Son's wish as well as a few other children this year.
Angela and I have becomes friends over these past few months. Recently, we got together for tea and taked about the Make a Wish Organization, among other things. I asked her how she got involved with this and what inspired her. She said that she was a childhood cancer survivor and that experience prompted her involvement with the MAW Organization. She said that, "Every child and every wish is unique, but all the children I've worked with have inspired me with their strength. It means so much to me to see the kids and families get excited and forget about their illness for awhile. So I've seen firsthand the kind of impact Make-A-Wish has on the families, and it motivated me to raise money to support the organization." Angela works tirelessly in her spare time to raise money for the MAW organization. Since I've known her, she has had garage sales, bake sales and will also be running the Chicago Marathon on Sunday to raise money for Dear Son and the other children she sponsors for the Make a Wish Organization. Her goal is to raise $3000 for these children. You can see her progress or make a donation to the Make a Wish Organization here under Angela Doyle. (Thanks to the employees of Dear Son's Dad company who donated to the Make a Wish as well.)
This year, we'll be watching her run the race on Sunday, as well as tracking her here. One of the cool things about the Chicago Marathon this year, is that you can sign up to track the runners. She has been training since March for the marathon and has logged over 500 miles in preparation for the race. She usually runs 5-7 miles three times a week with a longer run on the weekends. The weekend prior to our tea, she ran 22 miles.
One of the things I am most thankful for, is how easy they are making this for us. It is really hard sometimes doing things when you have a child with special needs because everything you do is a thousand times harder than it is to do with a normal child. It's hard too because sometimes, well, you just get tired. The MAW organization has gone out of their way to do everything possible to make it easy for us to travel and to take care of everything for us ahead of time.
As for Dear Son, he is starting to get excited about our trip. We'll be celebrating his 18th birthday down there so I'll talk to him about how everyone will sing Happy Birthday to him and clap and he gets a big smile on his face. He loves a crowd and being the center of attention.
Today however, he was unable to go to school. He had a bad seizure this morning and had to stay home. He slept until 5 p.m. and then I got him up for two hours before putting him back to bed for the night. The good news was that he didn't have a fever so at least he's not coming down with anything.
That's all the news for now. I'll update you when I get more information. Thank you for all of the lovely comments and e-mails about our trip.

Friday, October 02, 2009

Standing in the Checkout Lane of Life…

The school bus arrived home early, for the half day of school. It was only 1 p.m. now, and we were only through part of the day. I tried to visit a bit with the substitute bus aide, as I took Dear Son off the bus, but Dear Son wasn’t interested in idle chit chat between us, as a gentle rain began to come down. I rolled the wheelchair up the drive, into the garage and closed the door. I had hoped that once inside, I might get a little time to visit with Dear Son before he fell asleep for the night.

His days are shorter now. He falls asleep pretty much right after he gets off the school bus. I try to sit with him outside on the drive for a few minutes, on really nice days, to talk about what he did at school that day, but many times he falls asleep right there. If that weren’t enough, they tell me he has started taking more naps at school.

I take him inside and put him in the recliner in the living room, trying to avoid the inevitable. At least he’s not in his bed, I tell myself. Sitting up will be good for him. Within five minutes, however, he is fast asleep. I move the wheelchair past his rocker that sits at the table, the one he used to sit in after school just last year. It sits at the table, as a dull reminder of the good old days, never to be used again. But somehow, I can’t bring myself to put it away. That would be too final. I pass the rocker on my way to the recliner, taking a blanket to cover him up while raising the footrest up to make him more comfortable. He sleeps until 5 p.m.

I am concerned a bit, by the disease progression. By now, it’s not a surprise. It’s as if he’s in the check out line of life. As Dear Son stands in line, in his wheelchair, I keep grabbing his hand, trying to bring him back into the store. It’s as if, I keep pulling his hand, trying to get him to look over at me while telling him, “Remember this, as I grab a toy he might like…or remember when you used to like this…and then I would tell him something that he used to do, when he was a little boy.” I’d then get desperate and grab at just about anything, hoping to make him laugh, like he used to. All the while, it would be getting harder and harder to get him back into the store. The line would move forward, with the check out getting nearer and yet, I’d go around the store, trying to get Dear Son’s attention, to pull him back out of the line. In the early days, it was easy to distract him, when he was further out in line, but now, as he moves towards the front, he no longer wants to get out of that check out line, nor does he want to look back.

It’s hard too, just getting him to smile. Part of it, is maturity. They don’t laugh at seventeen as easily as they do when they are ten. And part of it, is that he’s just plain tired. I can see that it takes all of his energy, just to get through the day. Those days are short now. He sleeps from the time he gets home from school at 3:15 p.m. until the next day. He might wake up for five minutes around 5:30 or 6 p.m., just enough for me to start his supper through the feeding tube, then he’s back to sleep until the next meds are due around midnight. He’ll wake briefly, I’ll change his diaper, then he falls back to sleep. The only other time I hear him, is if he cries out from a seizure or chokes on his saliva. If that weren’t enough, he’s started to take naps at school. These aren’t medication related anymore, it’s just that he’s moving up, in the checkout line of life.

For that reason, everything is riding on the “Make a Wish” trip. Someone asked in the comments section the other day, how it was going, and that they wanted details. And for now, I don’t have them. We should be getting our itinerary any day now, and when we do, I’ll share it with you. But more than anything, I need Dear Son to enjoy this trip. I want to see him laugh, as in really big belly laughs. I want to see him smile. I want the days to be so much fun that he doesn’t want to sleep all day. I need that for me, as much as for him. I need and want to be able to look back and remember that smile, the one that would light up a room. I need to remember the belly laughs and how his head would fall forward from the belly laugh, because he couldn’t laugh and hold his head up at the same time. I want to remember the pretty girls, the ones he stares at and tries to get their attention. I want to remember the sun on his face, as I hold him in the pool, him with his eyes closed, in a deep state of relaxation in the swimming pool, like he loves to do. I want to remember all of that. I want it to be the best. The Make a Wish trip is like the giant blue light special in the store of life, where I pull Dear Son out of that check out line, and bring him back into our world, even if it’s for just a little while. And the 18th birthday, well, it will be the time of his life, or so I hope.

But today, I’ve watched him sleep in the chair. I’ve moved him into the bedroom and tucked him into his bed. I’ve changed his diapers, fed him, gave him his medications, hugged him and kissed the stubble on his cheek. I gave him everything I have, because I love him and so I won’t have any regrets. But somehow it’s not enough. I need to pull him back, pull him back into our world for a little while longer, so I can hear his laughter for a little while longer. But tonight, it’s not going to happen. No tonight, I just hear the rain.

Note: Dear Son has a progressive neurological disease and suffers from seizures, dystonia and severe mental retardation due to a random mutation of the ARX gene.
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