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Tips for Flying With Your Special Needs Child
Tips for Flying With Your Special Needs Child
Flying for almost anyone today is stressful. Any parent flying with children will attest to how stressful it is. Flying with a special needs child is exponentially stressful.
Many families with special needs children opt to forego flying altogether. Unfortunately this not only limits vacation options it can further isolate these families from friends and extended family.
Having just completed a flight with my 13-year-old daughter with autism and other disabilities I want to pass on some tips that hopefully will encourage other special needs families to brave the skies and expand their travel options.
When I travel with my daughter my primary goal is to make the process as stress free as possible for her, our fellow passengers and myself. Here are some tips that have resulted in many successful flights.
1. Reservations: Make your reservations as far in advance as possible. This will give you the most flight and seating options. Always alert the airline that you will be traveling with a special needs child.
2. Booking your flight: Take into consideration your child’s best and worst times of the day. If afternoons are difficult avoid booking a flight during that time. Also, the first flight out in the morning may be early but generally planes are in place from the last flight in the night before and are most likely to take off on time. Check the on time departure stats of the flights you are considering.
3. Selecting a seat: Window seats are ideal because they allow you to position yourself between your child and other passengers. Gone are the days when you could book the window and isle seat and hope the middle seat will go unoccupied. Select a seat as close as you can to the bathroom. If your child is a “rocker” who rocks back and forth when excited select a seat in the last row of the plane to avoid having him/her being a valid source of irritation to your fellow traveler behind you. If your child is a kicker – request a bulkhead seat.
4. Preparing your child for flight: Some parents find social stories and picture schedules helpful in preparing a child. When you do fly take pictures of your child in the boarding area, on the plane, etc. so you can use them for future flight prep.
5. Dress in or bring layers of clothing: Inevitably the plane will be too hot or too cold. Be prepared for both to ensure your child is comfortable.
6. Check in on line: This eliminates one step in the process at the airport.
7. Baggage: Check your bags. Yes, I know, we now get charged for this service but the last thing you need is to be dealing with your child as well as overhead baggage. Also, some airlines will discount the baggage fee if you indicate you are checking bags when you check in on line. Get down to the essentials you will need in flight. A backpack for yourself and child should be sufficient.
8. Identification required: Consider getting your child a passport. This makes the initial security screening a breeze.
9. Security: Again, get down to basics. Check with your airline to get up to speed with current guidelines with respect to carryon items. If the line for general security screening is long ask permission to proceed through the first class, business traveler expedited line. I have never been refused. Dress for ease of complying with security requirements. Sandals or shoes that are easily removable will speed up the process. If your child is a runner/bolter be sure to send him/her through the security machine first and advise the person on the other side to not let your child get pass them.
10. Feeding and toileting: Make sure you child has eaten before you get on the plane. Same goes for toileting. You have no control over how long it will be before you can access the bathroom or in flight food.
11. Boarding: Always ask if you can pre-board. I emphasize, “ask” and ask nicely. Give the gate agent the opportunity to say “yes”. Remember they deal with countless cranky and demanding people every day. My eldest daughter was a customer service agent for a major airlines for a number of years and the one thing I learned from her experience is that the gate agents will go out of their way to be helpful if you are respectful and ask for their help. If you are demanding or rude they are not so inclined to be helpful. I have always been allowed to pre-board which ultimately speeds up the boarding process for all passengers and minimizes unnecessary stress.
12. Alert your fellow passengers: Some may disagree with this strategy but I think it has a number of merits. When I fly with my daughter she wears a t-shirt “Miracle in Progress” from the Option Institute/Austism Society of America. Why? Several reasons: 1) it alerts people to the fact that they may see some unusual behaviors. On our recent trip while waiting in the boarding area she was very excited and let out a high pitch scream which resulted in everyone else in the boarding area jumping about 3 feet out of their seats and all heads turning to look at the source of the disturbance. ; 2) it is one way of letting others know that she is not just some unruly, undisciplined brat if a meltdown occurs; 3) it helps educate others as to exactly what this increasingly pervasive disorder looks like and 4) it is an implicit acceptance of help from other travelers who also may have a special needs family member.
13. In flight – your bag of tricks: I can’t emphasize the importance of this one. Not only do you need a change of clothes, a complete meal, a variety of snacks and drinks (preferably healthy and not just sugary) you also need some new items be it new markers, books, coloring book, small toy or game, whatever will capture your child’s interest. If your child has a special “lovey” or item they need to feel secure - bring it.
14. Medication: This is a very controversial issue. In my case I travel with a homeopathic remedy, Calms Forte, and two essential oils, lavender and Peace and Calming. Some parents use Benedryl to put their child to sleep. Whatever your preference is I urge you to check out the effects before your flight. In flight is not the time to experiment.
15. Deplaning: As a consideration for our fellow passengers and for the opportunity to pre-board we always wait and leave the plane last. The importance of this one came home full force recently when we were confronted with having to deplane via stairs and not a jet way. My daughter totally freaked out, as the stairs did seem rather steep. It took me almost 5 minutes to coax her down the stairs. Had there been a line of passengers anxious to get off the plane it would have been much more stressful than it was.
16. Baby steps: If you are anticipating a long flight in the future, if possible, consider a short flight to familiarize your child familiar with the process.
17. Stay calm: Not often an easy thing to do, especially when encountering delays or other unanticipated events, but our kids do pick up and magnify our anxiety.
18. Heaps of praise: Make sure thorough out the process you encourage and praise your child for their good behavior and courage.
19. Ask for what you need: Don’t be afraid to ask for help or special consideration, just be considerate and polite and you’d be amazed at the result.
20. Cultivate your sense of humor: Not everything is understandable in the moment but try to see the humor wherever you can. Laughing is good for your spirit.
Bottom line, flying with a special needs child requires a lot of planning and preparation but it is possible and opens many doors. Go for it!
What motivates your child?
We all know that our special kids learn/progress the most when they are motivated. Which, when you think about it, isn’t any different from the rest of us. The secret is observing and implementing what floats your child’s boat.
I have always been opposed to using food/treats as a motivational tool. Honestly, it reminded me too much of training techniques for animals. Also, my girl has a very healthy appetite and the LAST thing she needs is additional calories on a constant basis. As many of us have experienced, food/treats are a favored reward by many professionals who work with our children. Why? Because they work – health concerns aside.
Given I would not sanction food/treats as a motivational tool I had to come up with alternatives we could use both at home and at school. That meant I had to pay close attention to those things that excited her – which she would work for on a consistent basis. We also need to update our tools as they get older or the novelty wears off with time. And sometimes we need to compromise.
When my daughter was younger, and not toilet trained, she loved helium filled balloons. So I had probably the only bathroom on the planet with a helium tank in it. Every time she went to the bathroom on the toilet she got a balloon. That worked great at home but unfortunately not transferrable to school.
Her 3/4/5th grade teacher was determined we needed to get her toilet trained because if she wasn’t before junior high others would give up on her. It would close so many doors for her such as employment, group activities, living in a group home, etc. That got my attention and required a compromise. We agreed she would get one chocolate chip when she went to the bathroom on the toilet both at home and school. Well it took several months but it worked. The power of chocolate! In time we were able to fade the reinforcement.
She also has a number of fine motor challenges that complicate daily tasks such as dressing, undressing, brushing her teeth and bathing herself. She is almost 14 and still cannot independently do these daily self care tasks which most of us take for granted after the age of 3 or 4 years old.
With respect to her daily self-help skills the motivational tool that works best is a wild whooping celebration. It is NOT your standard, “Good job”. Honestly, if you were clueless and standing outside the bathroom door when she is undressing or dressing you would probably think a strip tease was taking place. Every item of clothing she takes off (or puts on) by herself is met with loud, exuberant cheering both by her and myself. It is a riot, she loves it but more importantly she will work for it. It motivates her. Seeing her so pleased also motivates me to persevere.
So, what motivates your child? How can you use it to develop your child’s skills?
Reality – facing up to it to benefit our children
My daughter, Julianna, is chronologically 13 years old, and yet developmentally, on average, she is slightly younger than a typical two-three years old. Does this information surprise me? No, not really. Does it break my heart? Absolutely!
I can choose to deny it – which honestly serves no one – or I can embrace it. Only then, can I work toward helping her to advance and develop her skills to the best of her ability. The good news is she continues to make progress, baby step by baby step.
As the parent(s) of special need children it is critical to balance our dreams for our children and the sometimes-brutal reality of their capabilities. Don’t get me wrong; I would be the last person to limit my expectations for my daughter. I’m always shooting for the moon as any of Julianna’s teachers will attest.
At the same time it is important to be realistic and truly comprehend the challenges ahead of her. If I can’t accept where she is today I have no way of helping her achieve more. Imagine trying to teach a child long division that has not mastered subtraction. Not pretty – a recipe for failure.
Reality can be sobering but it also can be liberating. Understanding and accepting her limitations and challenges puts less pressure on both of us. I know I need to adjust my expectations and re-set them to what is realistically possible. As she gets older, I find myself getting more realistic.
I have always been a strong advocate for emphasizing academics in her schooling. I resisted a “vocational” emphasis, which frequently is the focus once your child hits middle school. I felt focusing on vocational skills was admitting defeat. I have come full circle and now recognize the importance of focusing on her acquiring “functional” skills. Truth be told she is not likely to ever be able to curl up with a Nancy Drew book on a rainy day or balance her checkbook. Ok, the last one is attributable to a genetic defect she inherited.
How did this major shift in my thinking occur? Recently I organized a few tours of local supportive work programs, vocational training programs and sheltered workshops for myself and a few other interested parents. We were interested in learning what skills our children will need to succeed in such programs so we can build them into their IEPs now and not wait until it is too late. What an eye opening experience! Most of us became acutely aware that our children are totally unprepared for even this most basic and supportive work environment.
My take away from these tours was I needed to totally re-set my priorities for her. Based on her abilities we need to focus on increasing her ability to stay on task for more than 5 minutes, to follow instructions, to tell time, to be more independent in her self care skills, etc. She also has certain behaviors that will preclude her from even being eligible to participate in these programs such as her swearing and sometimes being physically aggressive. We need to get a handle on these behaviors now because later will be too late.
I can envision where I would like her to be in 5-7 years and to get her there, it means I must be totally realistic about where we are today. To increase her skills the foundations need to be in place. We have a great deal of work to do to shore up the foundations! I have confidence in her that given the appropriate focus she can and will be successful. My definition of success for her is now much more in line with her unique capabilities and challenges.
Holidays and Special Occasions - Difficult Choices
As parents of special needs children we are often faced with making tough decisions when it comes to holidays and other special celebrations. On the one hand we want to include our children as part of these joyous occasions and on the other hand their limitations and behaviors can be very disruptive and stressful for all.
My daughter, Alexis is getting married this fall and she very much wants her little sister, Julianna to be present. The wedding is taking place in California. We live in Illinois. Although I wanted to honor Alexis ‘ wish and I wanted nothing more than to have all of my children together to celebrate this event, I also had to weigh competing interests. I had to honestly answer the following questions:
- Will Julianna appreciate the significance of the event? No.
- How does Julianna react to large gatherings? Generally, not well. She does best in a predictable structured setting.
- Will traveling to California and staying in a hotel with her father for several days be stressful for her? Absolutely.
- Will being the sole caretaker of Julianna in unfamiliar territory be stressful for my ex-husband? Without a question.
- Could Julianna travel alone with her father a day before the wedding, make a brief appearance and then leave? No, she still needs assistance toileting and a male traveling with a 13 year old female presents some logistical bathroom challenges.
- Will Julianna’s presence be stressful for me? Yes, honestly, I want to focus on being the mother of the bride and not having to play sentry at the wedding cake.
- Will Julianna’s presence create additional stress for her older siblings? Yes, generally at family gatherings we tag team each other in caring for her.
- Does putting Julianna and everyone else through additional stress serve anyone’s best interests? Sadly, no.
