Our family is getting ready to leave for a trip to Hawaii in a couple of days. Last week I asked readers to give me feedback on their tips for traveling with a special needs child.

“Bring lots of activities and snacks.” “Plan the shortest route possible or a flight with the least amount of plane changes.” “..extra snacks and make sure electronics have full charge with back up battery options” “pack all of her sensory equipment, and some toys that she can play with, her favorite stuff animal, and her movies” “chewing gum” “priority seating”. Someone mentioned involving your child in the planning, ie packing and picking out activities. And my favorite, from my dear cousin: “medicate the mother with alcohol”. 🙂

Doesn’t sound much different from what you’d do to get ready for traveling with any kid, right?

Honestly, the pre-planning for this trip hasn’t been too much different from what it would be if Sabrina didn’t have special needs.

There have been some differences, and here’s one of them. I wrote up a simple social story for Sabrina, printed the pages on my home printer, laminated them, hole-punched them, and used 1-inch book rings to hold the pages together.

Yes, I have a laminator at home. A while back I found myself tired of visiting Kinko’s in order to laminate her icons, and for an affordable price I can now get those projects (like this one!) done in the comfort of my own home. It’s easy to use and I love it. I keep it in my hall closet with my printer, extra paper, laminating sheets, and my new book maker.

We will be introducing this social story tonight. I also will be bringing another short social story that talks about the rest of the family joining us in Hawaii. I’m still working on finishing that one.

I’ll also be packing up a couple of chewys for Sabrina. She really needs oral motor sensory activities. She chews on her fingers, her hair, anything. She mouths stuff, she makes loud clicking noises with her mouth, she grinds her teeth. I have found a favorite chewy, though she uses and tosses it, so I looked for something that can attach to her — a chew noodle with a carabiner at the end that I attach to her shirt. We also have a chewable turtle necklace, but she doesn’t seem to love it — I think it’s because it’s small and she prefers the long chewys.

We’re also packing ear muffs for when it gets too loud. They’re cute and my 3 year old is jealous because they’re pink. 🙂

Sabrina wanders, and she’s non-verbal. Besides telling people her first name and her age, she can’t give much more identifying information. A couple of years ago she got out of our hotel room at night (it was locked, but it was the kind of lock that opens when you turn the handle). Fortunately she didn’t go very far before we woke up to a security guard asking her where her parents were. Since then we’ve tried a few identification bracelets, but she gets them off. On this trip we’re going to try simple disposable wristbands, for both girls.

I’ve heard a lot of people mention giving Benadryl to their child so that they’ll sleep. A couple of years ago when we were getting ready to take our last trip to Hawaii, I looked into this as an option. I discovered that it could in some cases cause hyperactivity, and I just didn’t feel comfortable giving it to her if she didn’t need it from a medical perspective. I’m not judging any of you who use it for the occassional trip – I just decided I didn’t want to.

HOWEVER, since Sabrina happens to get motion sickness, I felt completely comfortable knocking her out with some Dramamine. 🙂 I did just that on that flight 2 years ago and she fell asleep about 5 minutes into the flight and woke up about 30 minutes before we landed. It mellowed her out enough during the boarding period so that she wasn’t freaked out. Once we landed she suddenly became refreshed and happy. It was windy when we got outside, and apparently she thought that was hysterical.

I’m packing a TON of snacks, of course. I decided to go with pre-made goodie bags that I can just easily whip out and hand to the girls. I’m packing pretzels, cut up apple slices, cheese sticks, rice sticks, and anything else that I find that looks like it would entertain 2 little girls on a long flight.

All of this talk about packing reminds me that I have to go pack… Aloha!

A year ago I was faced with the exciting yet terrifying knowledge that Sabrina would be going into her first inclusive classroom and meeting a class of typical kids. YIKES!

Well, it’s that time of year again. I’ve seen a lot of question floating around about how to introduce your child to their class at the beginning of the year.

Here’s how I did it, for my non-verbal daughter who was entering the 1st grade.

After talking to a couple of parents who had gone before me, I knew that I wanted to talk briefly to Sabrina’s class, read a book or two, and answer any questions that the children had. I wanted to keep it short and simple, not over-talk, but yet answer any questions they had in an honest way.

The first thing that I did was wait a bit. I wanted the class to feel Sabrina out a little bit, and to see if any problem areas would develop that I should address. I waited about 6 weeks. Some of you may wish to do it right away. There are pros and cons either way, and it’s really a personal preference.

Before going in, I made a list of her interests, things that I thought that the others could relate to. In Sabrina’s case, it was music, swimming, being outside, eating (especially anything salty), and going to school to see her friends. I picked out 2 simple books that I felt would make the points that I wanted to make about Sabrina. I set it up with the teacher (who was extremely welcoming), and then I took a lot of deep breaths. Who would of thought that it would be nerve-wracking to read to a bunch of 1st graders? But I had never been in a classroom of typical children. I didn’t know how they would react, what questions they would ask, how they would perceive Sabrina. I was definitely outside of my comfort zone.

When I arrived, I immediately relaxed. The children were so happy to see me and soon all eyes were on me. First, I introduced myself as Sabrina’s mom and told them that they may have noticed that Sabrina does things a little differently than they do. I told them I wanted to talk to them about what Sabrina likes to do, and let them know that they may find that they like some of the same things. I told them her interests, and after each one asked them to raise their hand if they liked it, too. They were very cute and enthusiastic about showing me that they liked the same things.

Then I read 2 books: My Brother is Very Special, by Amy May — written about a boy who has Apraxia, a speech disorder. I didn’t read it word for word, but tailored it a bit to fit the situation. Then I talked a bit about what it would feel like if they couldn’t communicate, and linked it back to how Sabrina sometimes gets frustrated because she can’t communicate.

Just Because, by Rebecca Elliott — a favorite at our house. This is an awesome story told by a little boy whose sister Clemmie has a disability. She “can’t walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don’t know why she doesn’t do these things. Just because.” And he also loves her “Just because.” The little girl in this book is more globally disabled than the one in the book above. The phrase “Just Because” is repeated over and over again, so I engaged the children by signalling when I wanted them to repeat the phrase.

I asked if anyone had any questions. They only had a couple of questions, and it involved questions about what she liked to do at home and about the interests I had just mentioned. “What does sabrina like to eat at home?” “Does Sabrina know how to swim or does she wear a floaty?”

And that was it.

A few more resources: Pedro’s Whale, by Paula Kluth Ph.D. & Patrick Schwarz Ph.D.; Why Does Izzy Cover Her Ears? Dealing with Sensory Overload, by Jennifer Veenendall; Don’t Call me Special: A First Look at Disability, by Pat Thomas.

We were sitting at the bar at Bear Republic Brewing Company in Sonoma County, chatting with a couple of strangers who were sitting next to us. We learned that they were mother and son. As we sat chatting with them, their casualness struck me. I suddenly thought about how “lucky” this mother was that she was able to spend weekends with her son and how challenging it would be for Ken and I do to things like this when we’re older.

At times I get overwhelmed thinking about Sabrina living with us forever. Not always, not often, but at times. At times it hits me out of the blue. Not only will we be older with considerable less energy, but the implications for when we pass away are heartbreaking. And, I am not going to lie – it’s difficult to think about how challenging it’ll be to do things that our friends without special needs kids will most likely be able to do fairly easily – travel, socialize, get involved in activities…

Yes, I know how ridiculous my thought about this mother and son sounds. On many levels. I found myself immediately surprised by my reaction, as it’s not a thought that I typically have when out in public.

First of all, why am I worrying about this on a getaway weekend with my husband? While at a bar.

Second, there I was, a mother of a special needs child, and I was enjoying a weekend out of town without my children. Any family with a special needs child could have looked and me and Ken and thought the same thing of us.

Third, we all have responsibilities. Some of us have special needs children. Others have typical children but no resources for childcare. Others have serious medical conditions. No one leads a carefree life.

As we chatted more with the mother and son duo, the fact that our daughter has a disability came up. The mother casually asked what kind of disability she has. When I told her “an undiagnosed genetic condition”, she asked me to tell her more about that. She showed a lot of interest, asked specifics about Sabrina. Anyone who knows me knows I am an open book, so we chatted about her for a while.

Then she told me that she has an adult daughter with special needs.

Who sounds very much like Sabrina – at the same developmental level that Sabrina is now.

And who lives with her.

And that she also has an adult son with a disability. More severe than Sabrina.

Oh, and that in her 40’s she decided she wanted to go back to school to study Special Education, she got her credential and is now a Special Education Resource Specialist.

Whoa.

This situation, more than any other in my life, really brought home the saying “Things aren’t always what they seem”.

I had told her that I assumed Sabrina would live with us forever because I wouldn’t feel comfortable placing her in a group home. My feelings about “putting her in one of those places” were very negative. She told me that her own son is in a group home, and he is very happy there. Her daughter is still living at home, and it’s currently a good situation for her daughter because there’s a lot of social activity in the home. When that’s no longer the case, she will find an alternate home for her daughter. Not because she doesn’t want her daughter living with her. But because it’s a better choice for her daughter.

Before she left, she made a simple comment that’s stuck with me. She told me that this is a period of growth in area of housing for adults with disabilities and to stay positive that by the time Sabrina is an adult, that there will be a lot more positive options available. And to be open to them.

The fact is that when Sabrina gets to be an adult, my parents most likely won’t be able to help us with her. They provide us with major support, and not having that will make life much more challenging. However, I am blessed to have a variety of help with Sabrina at this point in her life, outside of my parents. We have found respite providers and babysitters that take great care of her. We have friends who are wonderful to her, welcoming and open. We go out with friends, we have people over, we enjoy community activities, vacations, dates nights. The fact is that we do a fairly good job of balancing a special needs child with a healthy social life. Why should I think that having a special needs adult will be any different? What reason do I have to believe that I won’t have even more resources to pull from in the future? That I won’t be better equipped to deal with the challenges that come up when she’s adult?

A mother of an adult with a disability once told me that she worried so much about everything when her son was younger, and that now that he’s older, 1 of 2 things have happened. Most of the things she worried about didn’t come true. But those that did, she was better equipped to deal with at the time that they actually happened.

There are wonderful options for keeping Sabrina in our home, options that allow her to live with us while Ken and I lead full lives. And I am now confident that if we decide that it would be better for her to live elsewhere, that she would lead a more fulfilling life with younger adults, that there will be more positive options at that point. And if there aren’t? Well, as my wise friend Shannon recently suggested, I’ll get together with the strong, determined special needs parents who I’ve been blessed to find along the way and CREATE ONE!

I often talk about how one of the reasons I advocate for inclusion for Sabrina is so that she learns how to live in the community. But a less talked about reason, one just as big if not bigger, is so that the community learns how to live with her. Because growing up with children with disabilities will likely result in more adults with empathy and understanding, who know how to integrate those who are different into the community, and into their lives. Because it will likely result in a community of problem-solvers, who understand that Sabrina and others like her have the same right to safe, fulfilling lives. Which gives us even more options.

I wish that I had asked that woman for her contact information before she left. She truly was an angel that appeared when I needed it. Wouldn’t it be cool if she somehow saw this or I was able to find her? I still haven’t given up the hope that I’ll get to thank her and tell her what a profound impression she made on me that day.

She gave me hope, made me realize I have options. And when you feel like you have options, the challenge that you’re faced with doesn’t seem as bad. Suddenly, having Sabrina live with us as an adult seemed like a more positive thing. Not something forced on us, but a choice that we can make if it’s in the best interest of our family.

Kinda cool, huh?

[Note: post referenced and linked to a Huffington Post piece by Ellen Stumbo, “What If She Lives With Us Forever”, which prompted this reflection.]