Yes, My Child Is In The Room

There have been so many times I have taken Olivia to a doctor's appointment (usually a specialist) and the doctor somehow forgets she is in the room. No, she doesn't cry or cause a commotion to get the doctor's attention, but she is the patient and should be acknowledged. Touch her, hold her, examine her at the least! Usually, everything is directed at me. Last week, our experience changed...

We went to a nutritionist for the first time and now I wish I had taken her sooner. For starters, he actually came out to the waiting room to find us while we were waiting to check in. He talked to us, both of us. It had been raining that morning and Livy's socks were soaked. He proceeded to take them off and rub her feet while all the time talking to her and telling us all that he had learned about her. He was kind, caring and had done his homework on her background. He spent well over an hour with us and asked, "Is she hungry? Would you like to go ahead and feed her?" He grabbed a Pediasure bottle when I realized I had forgotten her food at home. He listened and explained and even gave me his email address to contact him. Unheard of!

I know Livy doesn't talk and I know she won't always look directly at someone but she needs to be treated with respect. She may very likely know everything that's going on...and who wouldn't like a good foot rub?

Happy Thanksgiving!

It is not often I get time to sit and think about what I am thankful for. But on this day, it is nice to reflect over the past year. I think what I am most thankful for this year aside from having a wonderful family, friends and a job, is perspective. And on this day of feasting, I will try to explain using the view point of a turkey.

I have to imagine that turkeys trot around all day not concerned much about more than eating, drinking, sleeping and making more turkeys. Of course, not being a turkey (I suppose that is debatable sometimes) I wouldn’t know for sure. But I bet they don’t get upset if their feathers are out of place or if it rains and they can’t go and play in the yard or if their favorite turkey friend can’t watch the football game that day. I would imagine that they would be most unhappy if they didn’t get their ration of food for the day or if they really understood what was going to happen to them before Thanksgiving.

Perspective can make life so much easier. I try not to worry about the small things. Before Olivia and Hailey were born, the little things used to frustrate me so much more than they do now. But your perspective on life changes quite a bit after your kids are born and especially if you have to endure years of trials and tribulations due to a child with chronic and severe health issues. All I have to do is watch my girls sleeping and all the day’s frustrations fade away.

So what I am attempting to say is don’t sweat the little things. It is truly energy wasted. Not to mention, most of the little things are out of your control. Spend time and energy trying to enjoy life and make it more robust. Perspective is a powerful tool. It can allow you to see life through the eyes of anyone you chose if you really pay close attention. It can change the way you live and treat other people. It can open doors to a world where you see more good than bad. And most importantly, it will make you realize how lucky you are not to be a turkey on Thanksgiving!

Happy Thanksgiving Everyone!

Jon

"The Traveling Wheelchair"

I came across a great website today titled "The Traveling Wheelchair". I started doing some research regarding accessibility for wheelchairs in stores. I took the girls to the mall yesterday to see Santa and for some window shopping and just to get out of the house (I know, it was only the first day of the girls' vacation week but I was getting ANTSY!)

For the first time I really noticed how difficult it was to navigate Olivia's chair around some of the stores. The displays were all so close together we were knocking off items left and right. Hailey would see something down an aisle and call us over to it but I could not for the life of me get Olivia through. It was a maze I was not about to enter. The two stores that caused the most problems were surprisingly kid friendly stores, Children's Place and Claire's. I noticed other mom's with strollers having difficultly as well. Not a fun shopping experience.

On "The Traveling Wheelchair" website, they assess places for accessibility and other things such as parking, restrooms and height of service counters. They have a great mission statement, "To help make the world more sensitive, respectful, safer and accessible to all." It appears the site mostly rates locations in Massachusetts. We could really use something like that down here in Florida! Sounds like a new project for us, what do you think Jon?

We Love Our Tomato!

So many people have asked us about the stroller seat we have for Olivia. What makes it so great is that it also makes for a perfect car seat. We had a very difficult time finding a travel system that was easy to disassemble and one that could fit in the trunk of our car. It was also difficult to find a car seat that would give extra neck support. What we found was not only functionally great but also kid friendly with nice color options. It is the SPECIAL TOMATO!
http://www.adaptivemall.com/specialtomato.html

This multi-positioning system is great for use at home, school or in the car. We use the Maclaren stroller with it for an easier transport option than Olivia's wheelchair. It is incredibly soft and comfortable and so easy to clean.

I also love the story of the origin of the name "Special Tomato":
http://www.adaptivemall.com/carbertomsto.html

The name is not to be confused with the restaurant, Sweet Tomatoes, as I accidentally tell people from time to time! I highly recommend this great piece of equipment.

What If...

As a parent of a disabled child, I constantly find myself asking “What If” on a regular basis. What if we had two healthy twins that could play and talk together? What if we didn’t have to live by the clock to administer medications? What if we could celebrate a holiday and not have to worry about ending up in the hospital? What if Olivia was able to tell us how she feels and where it hurts? What if I could wake up one day and Olivia could look into my eyes and say, “Daddy, I love you.”

What if. Those two little words that will forever keep me wondering. Every day is a struggle to let go of the dreams we had that will never quite turn out the way we thought they would. Most parents envision their kids going to school, then to college, then getting married, then grandchildren and a host of other things in between. I have now replaced those thoughts with hope. Hope that Olivia will be able to sit up by herself and watch her sister showing her a new Barbie. Hope that Olivia will one day be able to conjure up enough strength to take that first step by herself even if she is wearing leg and arm braces. Hope that one day Olivia will be able to raise her head and simply say hi. And hope that if nothing else, I can tickle her and she will know for an instant what it feels like to laugh.

The ironic thing about Olivia is that she is the strongest person I have ever known. She has fought more battles in five years than most of us will fight in a lifetime. She has beaten the odds and I know she will continue to do so.

So What If? What if Olivia had been perfectly healthy? What if she had not had to spend nearly two years of her young life in a hospital? What if she was able to walk and talk like any other child? The answer is, our family would not be what it is today. Her sister Hailey would not be nearly the loving, compassionate and understanding little girl she is. We would still be hiding behind society’s cloud of normalcy not comprehending for a moment the struggles parents with disabled children are entrenched with each and every day. Allison and I would not be half the team we are in fighting for our family. And we would not be able to look into Olivia’s eyes at true, innocent and unconditional love. The kind that looks back at you with determination and asks that you never give up on her. The kind that says, “Just give me a chance.” The kind that says, “Daddy, never stop believing. Never give up hope and never stop asking…What If.”

Not Another Stuffed Animal!

Over the years, our girls have taken in many, many stuffed animals. Hailey has given each a name and personality so parting with them is very difficult. When birthdays and holidays approach, we are asked, "What would be a gift that Olivia would enjoy?". Sometimes it is even difficult for us to think of things as the little things are what bring her the most joy. Livy does have her few favorite stuffed animals, especially the very soft ones we use to prop her in certain positions, or the ones that light up and make music.

I've asked my friends what their children with special needs have received for gifts and they too say...stuffed animals. I completely understand why and not knowing any differently, I would give stuffed animals as well. So the question remains, what does one buy for a gift for a child with special needs? There are some great options out there and I've included some links below:

Seedlings Braille Books for Children is a nonprofit organization dedicated to providing high-quality, low-cost children's books in Braille. What makes many of these great is that they are touch and feel books so they create a wonderful tactile experience. http://www.seedlings.org/

Another company, Abilitations, brings fun and function together with great adaptive toys. http://www.abilitations.com/

And a personal favorite, a catalog put out by Toys "R" Us called Differently-Abled Kids http://www.toysrus.com/shop/index.jsp?categoryId=3261680

And then for all of you who are harboring a jungle of stuffed animals, there are some great places to donate them to as well:

http://www.stuffedanimalsforemergencies.org/
http://www.projectnightnight.org/

All Our Ducks In A Row

Just about a month ago, Jon, Hailey and I took a trip up to Vermont for a wedding over a long weekend. This would be the first time we would have flown away from Olivia since she was very little. It was a very big deal. My sister, who is amazing with Olivia, offered to take care of her for the weekend. This would be a first for her also. She had taken care of Livy before but not for that length of time. The day before we left, I was having serious doubts about leaving. So nervous for something to go wrong. So many medications to give. But Meaghon was confident and I trusted her completely.

In the days leading up to the trip, Jon and I had a lot of work to do. It was amazing how much information we had to gather. We finalized our wills, made sure there was plenty of medication and supplies in the house, and we completed Livy's Care Notebook. I knew for some time that this Care Notebook would be important. It is Livy in a book. It lists all of her doctors, therapists, medications, schedules, school information, pharmacy information, and just about everything else someone would need to know if God forbid something happened to Jon and me. We keep it all together with our wills and insurance information in a neat little folder. Here is the link to the site where I downloaded the Care Notebook.

We really have to take ourselves out of our shoes and look at this from someone else's perspective, someone who may need to step in and take care of our child.

Bathing - My Kid Isn't Laundry

A few years ago, I attended a conference regarding children with disabilities. I clearly remember one workshop that I went to addressing ways to care for your special needs child. The woman talked about alternative types of equipment. On the subject of bathing, she said,"Instead of using a bath chair, you could simply use a laundry basket to bathe your child in the tub." WHAT?? She was suggesting I put my daughter who had no trunk control or head support into a laundry basket in a bath. The problem is that many insurance companies will not pay for bath chairs, they consider them "luxury items". We were lucky to obtain a bath chair though insurance after multiple letter from Olivia's doctors and therapists.

Although the bath chair is indeed very helpful, there is still the challenge of lifting her in and out of the chair. And then after the bath, where to put her down and dry her and change her. We are in the process of working with a contractor to possibly put on an addition to our bath to create room for a roll-in shower and changing area for Olivia. I can't imagine what the cost will be but it will become a necessity.

I propose the question, what do other parents do for bathing? Are there better options for equipment? Methods of transporting them in and out of the bath/shower? And lastly, has anyone had success using a laundry basket?

A Beginning

Over the past five years I have searched the web for answers. I've had so many whys and whens and what ifs. I wanted to find new ways of doing things, ways to make life easier. As a mom of a child with special needs, I have found that each day presents with new challenges. I wanted to create a place where parents could share their ideas. How do we face these challenges? What are some great tips/tricks we have found? And how can we help each other? I have been lucky to have met some great parents of kids with special needs and we've been able to support one another.

I plan to add posts of all sorts. What restaurants are easy to navigate with our kids' wheelchairs? What great products we have tried with our kids that actually work! Tips for bathing, tips for transporting, tips for feeding, tips for almost anything that poses a challenge! Ways to find products and services for our kids. Where to find support groups. Upcoming events for our kids to attend and conferences for us to learn more from.

I am also hoping to have other moms and dads submit stories and ideas too.Let's be the voices of experience. Let's share what we know...we are the EXPERTS! And I am yet to find "The Survival Guide for Parents of Special Needs Kids" so let's create it here!