Wednesday, June 07, 2017

The Other Side of Fear: Tips For Traveling as a Special Needs Family

This post is sponsored be Alaska Airlines. I'm so excited to be partnering with Alaska Airlines this year as we've got some exciting things planned. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. As always, all opinions are my own.

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Fear to love. That's the journey of a special needs parent.

For many of us our journey begins with a horrible ultrasound appointment, or perhaps a sinking feeling in our stomach when we see a red flag with one of our children, or a diagnosis from a doctor. In each case we're usually being told that something is wrong with our child.

Wrong. As in, not right. As in, different from the norm. As in, strange and unusual. Maybe physically, maybe intellectually, maybe both.

And wrong, different, strange and unusual are causes for fear.

I remember those early ultrasound appointments with Lamp. I remember medical descriptions and a lack of answers and potential outcomes and it was a really, really scary place to be. And while I know I can't speak for every special needs family out there, I've done enough interviews by now to know that for many of us this journey starts in a place of blinding fear. The fear that whispers wrong, burden, other, trial, more than you can handle. 

And for me it was a re-awakening of sorts to remember that love is a strength, a resource all its own. Love was less of a voice and more of an enabling power that said:
Different is not wrong. She is right.
Love is never a burden.
She is not other, she is yours.
She is a blessing.
YOU have got this.
But facing our fears, whether it's in the context of special needs parenting or in the greater context of life, isn’t a one time event. While I no longer fear limb differences, disability, wheelchairs, or accessible parking there are new fears to face all the time.


One of the fears I faced years ago was bringing a power wheelchair into our lives. The day that Lamp was born a therapist of some sort--a kind woman with a gentle smile--visited us in the hospital, held Lamp's tiny hand in hers and said, “I think she’ll be able to drive a wheelchair really well with this hand one day.” As kind as she was I bristled at the thought. My daughter was going to walk, why would she need a wheelchair?

Before her first birthday another therapist tentatively, carefully brought up the idea of a power wheelchair. My resolve softened and I thought Maybe. Eventually, when we moved to Texas and Lamp was in therapy 3 days a week, her then therapist asked if we could schedule a meeting with a mobility company I was finally ready to accept this new reality.

Sorta.
I spent weeks debating the color of her chair, which put us off from being able to order the actual chair. Then once she got her chair and had learned--dare I say mastered?--operating her chair at therapy and it was ready to come home and I spent another few weeks telling our therapist (and myself) I wasn’t ready. I don’t know how to use the chair. I need more lessons on operation. Blah, blah, make-up-crap blah. 

Our wonderful therapist Rebecca (Hi Rebecca if you’re reading--we still love and miss you!) was kind of an angel. She gently let me resist for a few weeks, but with equal gentleness and a little firmness finally told me “It’s not that hard. She’s ready. You can do it.” And so both of us lifted it into the back of our van and I brought it home for the first time. I’m not sure if I was crying then, but I’m crying now remembering it all.

It felt so scary. I lived in a world where wheelchairs signified distress and weakness. I had often felt bad for people in wheelchairs and now I had a daughter who would be using one, maybe indefinitely. Not to mention that this chair was going to be a bright, shining spotlight on a little girl who already received enough unwanted attention as it was. I was afraid.  

But on the other side of that fear lay something else. Freedom. 
As I waited for my husband that very first evening to help me unload the chair and we brought it into the house for Lamp to use for the first time it was like she could suddenly fly. This chair wasn’t restriction, this chair was freedom. FREEDOM! Freedom for my little girl who had to scoot everywhere one little scoot at a time, or wait to be carried. She could get from one end of the house to the other end in less than a minute! She could sit up at the computer and play games with her sister at eye level.

The other side of that fear was freedom.

That little chair quickly became a bigger and bigger part of our lives. First we kept it around the house, only taking it out for the occasional walk. Then we started taking it to the park, then to a friends house, then to the mall or a restaurant. Finally, I remember the first day I loaded it up and took it with Lamp to preschool and how worried I was to let someone else monitor Lamp and her chair for the first time without me around. But once again, so many wonderful gifts lay on the other side of that fear. 

And then came the day we decided to travel by airplane with Lamp's power wheelchair. Because a power wheelchair is actually quite a bit different than a manual wheelchair, our nervousness was also a bit higher. Power wheelchairs are much heavier (Lamp's chair is the smallest on the market we've been told and is 130 lbs. It requires at least 2 people to lift or carry) and much more expensive (think hundreds vs thousands. Lamps chair cost more than our first two cars... combined.) We debated bringing it at all because we could always use the double stroller as we always did and it would certainly be easier, but we also knew we needed to cross this bridge one day and that we needed to give our girl her mobility, her freedom. 

Navigating a flight with a power wheelchair was a whole new ballgame. First there were the logistical concerns of the actual chair--Will it go on the plane with us or does it get stowed elsewhere? Who will they get it to where it needs to go and how will they get it there? Will the chair be safe?

Additionally, there is the social aspect of travelling. For some odd reason the attention always seems to multiply in airports. In a mob-mentality sort of way adults tend to drop their polite habits in large groups of people. Polite habits like, "not staring" and also "not craning your head around whilst we walk past causing you to almost run into a wall." I’m sure there’s a psychologist who can explain this, but for whatever reason it seems to happen.

And sometimes things just get weird. In fact on this maiden flight with Lamp's power wheelchair, as we were exited the plane in Florida and into the airport people started clapping.

As we were exiting the runway, I was bent over talking to Lamp while she was driving when I realized that a group of (mostly) elderly onlookers were completely delighted at the sight of a 4 year old driving her own wheelchair that they started, oooohing and ahhhing and pointing and then they broke out in applause. Weird. Even weirder was my knee-jerk reaction to tell Lamp to smile and wave at the people. Not in a “OK, lets pause here on the red carpet and smile to all your admirers” sort of way, but rather in a "I'm so confused right now let's just smile and wave Hi back” sort of way. But still! About 2 seconds after I told her to wave I was like, What? Nevermind! You don’t have to wave to these people—nice as I’m sure they are—you don’t owe them anything. Not a wave, not a smile, not a Irish jig.

But we did it. We took that first flight and had what goes down in my mind as one of our favorite family vacations to date. Lamp drove her chair all over that small Florida vacation town and it wasn't always easy for her father and I to watch. Because we were out of the safe bubble of our neighborhood and community, people stared up and down and sideways at Lamp everywhere we went. And almost every time Lamp saw them staring, she looked them straight in the eye, said Hi and kept on driving.

I am so proud to be her mom.

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Here are some of my tips for traveling as a special needs family and particularly if you have a wheelchair user in the family and you're flying for the first time. I'm no expert! But we have flown several times now (including a time where our wheelchair was brought to us off the plane broken and unusable. Grrrr.) and I'd LOVE to hear thought from other veteran wheelchair travelers and special needs families who travel as well.

First, breathe deep you guys, there are so many people on your side to make traveling with a wheelchair a smooth and (semi) easy process.

1. Call the airline and ask about their special services. 
If you're nervous about traveling with a wheelchair for the first time it's a good idea to call the airline(s) you're planning on traveling with and asking them about how they handle wheelchairs and what the procedure is like. Someone from the airline will be able to guide you through the process. I love that Alaska Airlines participates in this amazing Wings for Autism program. 

2. Request special services in advance
Ideally the day you buy your ticket you should request special services. In fact most tickets have a place to indicate if special services are required. It's important that you let your airline know well in advance (not the day of your flight) about your chair so they can account for weight limits and other logistics. 
3. Arrive extra early. 
Since there is a little more involved when traveling with a wheelchair it's important to arrive at the airport even earlier than normal so they can help you with pre-boarding and getting instructions for your chair.

4. Make sure you talk to the gate agent.
Once you arrive at the gate, speak to the gate agent to let them know about your chair so they can help make arrangements. They'll get someone up from loading to speak to you about your chair and how you'd like it transferred and any other instructions you have.

5. Take a before picture of your chair so you have proof of the condition before boarding. 
We've never done this but great tip in case something does happen to your chair.
6. Attach instructions to your chair.
I LOVE that Alaska Airlines has a form for you to fill out, as we've never encountered this with other airlines. (Maybe they do, I just haven't seen it.) So if there isn't a form to fill out, attach your own instructions. And I would add, write down the names of the people assisting you and handling your chair, both in your departure and destination cities. While our chair has only been brought to us completely broken one time, the truth is that it often gets a little banged up in flight--whether it's the handling or the actual flight I'm not sure--but this way you have a record of who actually handled your chair is never a bad idea. Hopefully attaching instructions in the first place will help keep your chair from getting mishandled in the first place.  

7. Know your rights. 
Yes it can be hard to travel with a powerwheelchair for fear of damage, but there are laws that cover your rights. The Air Carrier Access Act or ACAA is there to protect the rights of disabled passengers. If a chair is damaged the airline is responsible for fixing or replacing the chair in total. (This blogger and disability travel advocate discusses his $22 thousand dollar wheelchair being damaged and replaced by the airline he was flying.) To be honest, I can't even imagine the process of trying to get a chair replaced, because it would definitely take some time, BUT as long as you know that in a worst case scenario you're covered I believe the risk is worth it. 
8. Be kind. 
I'm sure I've spoken to a gate agent or two with tension in my voice because this chair is our daughter's legs. And it's expensive. And replacing it is still a very, very big deal. BUT talking to everyone kindly goes a long, long way. We always kindly remind the people at the gate who take her chair down that these are her legs and to please be very careful. On our last flight I remember one of the guys saying, "My mom uses a wheelchair, so I totally understand. We'll be careful."
Everyone really is doing their best. OK, usually--ha!--but most damage is the result of an accident.  Most people will treat your chair with respect and certainly if you talk to them ahead of time with kindness and respect, that will go a long way to ensuring your chair travels safely. 

9. Be brave. 
Face the fears and do it anyway. It is so worth it. I love seeing all these photos from our family travels and seeing the places this little wheelchair has been. Yes, nearly every time we travel there are worries and fears to face. We take extra precautions, we look up accessible places to go, and we prepare for alternate routes and plans. But we do it. And it is worth it. On the other side of our worries and our fears lay family adventures, memories , fun and adventure we will have for a lifetime.

And here's the thing... it's OK to feel worry, trepidation and fear. It's fine. Because it doesn't matter where we start, it only matters where we land. And time and time again we've landed in love.

I'd love to hear stories from my fellow special needs families or individuals with disabilities who travel--any other advice? Do you get nervous nearly every time you travel as well? Has that changed over time? I'd love to hear any and all thoughts. And please stay tuned... I'm got some super exciting stuff planned with Alaska Airlines that you're not going to want to miss!

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2 comments:

  1. Thanks for sharing your fears and experience. Navigating life with special needs is a pretty steep learning curve. After more than forty years as a paraplegic I'm still figuring things out and for the most part doing a really good job of it. You and Lamp seem to be doing it quite well too. My first international flight was fifteen hours. Talk about planning. Fifteen hours on a plane with no access to a bathroom and questionable accessibility once I landed. Talk about stress. But oh the places I've seen, the people I've met, and the memories made!

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  2. Liz the PT3:35 PM

    Freedom. Yes. This is going in the link folder to send to parents as they contemplate a wheelchair for their child. Thank you.

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