Guest post
I came across this wonderful article by Mari Nosal and she gave me permission to share it with my readers. These are great statements to reflect upon as a parent of a child with Autism. They are also great for promoting education and awareness among the neuro-typical population. Thank you Mari!
1. Thou shall not yell when speaking to me. My disability does not impair my hearing and I am extremely bright. Perhaps even brighter than you are.
2. Thou shall not ignore me, talk negatively about me, speak unnaturally slow, or ask questions to others in the room that pertain to me. I can comprehend what you are saying just fine.
3. Thou shall believe in me and help me believe in my skills and self worth. Note the good in me and do not merely point out my negative behaviors. Believe in me and I will believe in myself.
4. Thou shall not perceive me as dumb. I am extremely intelligent. I do not learn in the same way as you, and maybe not as quickly as you expect me to. Have patience with me. Once I recall information, I never forget.
5. Thou shall not judge my behavior. I can get overstimulated in certain environments. I may be hypersensitive to sound and loud noises may hurt my ears. Fluorescent lights are distracting for me. They have a humming noise, and can pulsate. All the noises in a room can blur together. Please make accommodations to help me.
6. Thou shall not be so quick to scold me. Do not tell me that “I know what I did”. I do not. Tell me what my infraction was in a simple, concise manner. I want to please you, but I have difficulties inferring meaning within a vague statement. For instance, do not say please clean up your bedroom. Tell me exactly what you want, such as ‘Please make your bed and pick up your toys”.
7. Thou shall not compare me to others. Please remind me, and note the talents that I possess. This increases my confidence and positive self worth. Learning disabled or not, we ALL have talents to contribute within society. I need you to help me realize what mine is. Believe in me and I will believe in myself.
8. Thou shall not exclude me from activities. Please do not mimic me, ignore me, or bully me. Please invite me to play with you. It hurts my feelings when I am excluded. I like to run and jump in the playground, and be invited to birthday parties too. Grownups can help me make friends by encouraging other children to play with me. I can be a loyal friend if you get to know me.
9. Thou shall give me choices. I do not like being ordered about any more than the other children. Give me choices so I know you value my capabilities and opinions. Make them simple and concise. Present two options or so. I get confused when too many questions or directions are given at one time due to my processing speed. For instance, ask me if I would like to wear my blue sweater or green one, rather than asking which sweater I would like to wear.
10. Thou shall not judge me by my diagnosis, but by my character. I am an individual, just like other children. As my son used to say, “Mom my name is John (name changed for his anonymity) not Asperger’s”. A profound statement I would say. :-0)
Please join me in my utopian world where society perceives individuals as a whole, and does not judge them merely in character segments.
Thank you!
Mari
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About Mari
Mari Nosal, M.Ed., CECE is a school coordinator, blogger and author. She is certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. She is certified in Community Crisis Intervention by the Community Crisis Intervention Team of Bristol County. As a parent of a son with Asperger’s, she and her son show others how it is possible to overcome obstacles and achieve your goals.
You can follow Mari on LinkedIn, Twitter, and Facebook
If we want to instill character, pass on our values and raise secure and confident children we have to be more mindful about our parenting. Today’s culture challenges family-bonding opportunities that used to happen naturally in past generations but togetherness is not something that today’s families can take for granted.
Having regular family meetings is great way to build relationships and enhance social skills as well but when I mention the wonders of family meetings to some of my clients they sometimes respond with the many reasons why it would not work in their house. Some parents can’t see how a child with Autism could participate or they don’t see the value. Others state they don’t have the time or they have a misguided understanding about the purpose of family meetings.
Here are some of the mindsets I come up against from parents.
- Children with special needs, such as Autism, will be overwhelmed and unable to participate fully.
- Children need to be a certain age before family meetings can be worthwhile.
- Family meetings are something you hold only when an issue needs to be resolved.
- The time it takes to plan for, arrange and hold one is not worth the effort.
Here are my counter arguments for each of them.
- Regardless of your Autistic child’s unique needs and challenges any environment can be adjusted to reduce tension or sensory overload. Distractions can be minimized and stress reduction activities can be incorporated into the gathering. Every child has a strength that can be tapped into which will enable them to contribute on a meaningful level.
- There is no age requirement that should be adhered to. Learning how to function in a group is something ALL children need to learn early on and a family meeting provides a wonderful laboratory to practice in.
- If family meetings are only held in a crisis situation they are bound to trigger negative energy and become associated with dread. Families need to experience the positive energy of being together for proactive reasons as well as reactive ones.
- These gatherings can be formal or informal and require as little as fifteen minutes per week or month. The best motivator to is to be realistic and start small so you can experience success, this will inspire a positive anticipation for more meetings.
For the disbelievers still reading this here are ten benefits of family meetings –
- They keep everyone on the same page. Meetings improve communication and lessen the confusion about what the immediate future will hold. Updating the family calendar at every meeting is a great way to make this happen.
- They enhance connection – bonding. Family meetings that promote positive examples of relating to others are powerful ways to bond and build relationships.
- They provide structure, routine and ritual. Children on the Autism spectrum thrive in a predictable environment and this is a wonderful vehicle to minimize surprises and create regular anticipation for what is to come.
- They improve self-esteem. Taking a few minutes to highlight recent accomplishments, attitudes and effort of each individual can boost self-image and reinforce good feelings for all.
- They provide an additional place for emotional support. Everyone needs a safe place to unload occasionally. Taking a few minutes for everyone to express what bothered him or her in the past week will help diminish negative energy.
- They stimulate problem solving. This is a great time to discuss issues or roadblocks to achieving tasks. Allowing children to have input into solutions makes it more likely they will “buy into” them.
- They present opportunities for conflict resolution. No family is without conflict but children need to be taught how to resolve it appropriately. Modeling ways to maintain peace or handle conflict constructively is important.
- They demonstrate democracy in action. Allowing everyone to have input into the agenda for the upcoming meeting will help them look forward to the event.
- They create fun memories. Allowing time for laughter, fun and games, music, crafts, theater will not only make it enjoyable but generate great memories as well and will ensure that everyone will want to come back for more.
- They teach social skills in a relaxed manner. Gathering together as a family group is the perfect setting to instruct, role model and practice social skills such as manners, turn taking, listening, making conversation, non-verbal communication and more. Children with Autism struggle with social skills and need to practice more so then their neuro-typical siblings and peers. There is no safer or better place to do this than in a family meeting.
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If you already hold family meetings in your house please share your experiences with us.
Temple Grandin has done it again. Her new book, Different, Not Less, is an outstanding accomplishment – 300
pages of truly inspiring text that invites you into the world of ten extraordinary individuals. This is a wonderful compilation of tales about people who maximized their potential in spite of the odds that a person with an Autism Spectrum Disorder faces.
Many of these individuals were diagnosed later in life because very little information was known about this neurological disorder in their youth yet they were handed out other labels, such as “neurosis or psychosis” and bullied as being different or weird. Not only was the diagnostic label of Autism misunderstood but the importance of early intervention and treatment was not yet recognized. Despite what someone might refer to as “starting behind the eight ball” all of these narratives give evidence to the fact that nothing is impossible.
Whether these individuals acquired a diagnosis at a young age or later in life all of them experienced the struggles that come from being wired differently. All of these talented people were able to find careers that allowed them to not only nurture their strengths and their passions but blossom beyond the predictions and expectations that others may have given them earlier in life.
Just like Dr. Grandin struggled to come into her own, these ten success stories all share similar paths full of unique struggles yet they also share one common thread – someone who was there to guide them in a positive direction when they needed it the most. At one point or another they all connected with caretakers, mentors or people who encouraged them and believed in a power buried within.
This book is a great testament to the amazing potential we all have inside regardless of labels, especially when someone believes in us. A great book of inspiration for any young individual on the Autism spectrum to read with a parent as each personal story has the power to motivate and each of these ten individuals has the potential to become a personal hero that can catalyze positive growth with amazing results.
Thank you Temple Grandin for yet another wonderful contribution to the Autism arena!
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This exciting new book will not be out until April 16, 2012 but is available for pre-purchase at a pre-sale price. Simply go to Future Horizons and use my code – PARENTCOACH – in the coupon code box – to get your copy of Different . . . Not Less by Temple Grandin for $16.96 instead of the $19.95 retail price. You can also benefit from 15% off other items you may wish to purchase, including conferences. Enjoy!
Let Me Count the Ways I Love My Kids
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Happy Valentine’s Day greetings! Today is known as ‘the day’ when we go out of our way to express our affection to those we care about. Most of the emphasis is placed on our romantic relationships with our spouses or partners but what about the kids?
That’s right, our children need to know we love them. Yes, we show them we care on a continuous basis throughout the year but how intentional are we about it? Do we tend to show our love by default? This is easy to slip into with any relationship where we find ourselves going through the motion without much real emotion attached. What meaningful gestures of love have you bestowed upon your children today?
I would like to propose that we always behave as if every day were Valentine’s Day. One can never have too much love in their life – it is the fuel that keeps us going. Having an abundance of love and demonstrating it on a daily basis is a good thing to focus our efforts on, not just one day out of three-hundred-sixty-five, but every day. Yes, there will always be the occasions when we detest our children’s behaviors and find it difficult to smile or hug them – if they will even let us.
What more can we do beyond the typical to ensure our sons and daughters feel loved, especially when we are stressed? Every loving relationship – not just those with your spouse or partner – needs some spice added to it every once in a while. If you would like to overhaul the way you show affection to your children or would like to become more deliberate in your approach, here are a few ideas to help you get started.
- Sit down and list how many ways you already show your children you love them and make a commitment to add more to the list.
- Think outside the box and expand your list with different ways to show them you care. It’s amazing what comes to mind when you deliberately take the time to think or write about it.
- Take out a calendar and mark down one little extra special thing you can do each day beyond the normal or the expected ways of showing affection to your children. You may have put little notes in their lunch box or done other quick things in the past to show you care. You know these efforts have a positive impact but we all get busy and just forget to do them – so put it on your schedule.
Once you put these little activities into practice take the time to notice the results. As soon as you correlate your actions and increased attention to an improvement in behavior on your child’s part, you create a self-reinforcing cycle of positive energy.
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What special ideas do you have for telling or showing your children that you love them? Please share.
Helping Your Child with Autism Maintain Friendships
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What would life be like without friendships? Some of us may be able to identify a time in our childhood when we were friendless or felt as if we were. If you are a parent of a child with an Autism Spectrum Disorder your child may be living that scenario right now. Most children with Autism struggle to make friends and once they make a friend the other challenge is to know how to keep the friendship going. Luckily there is much a parent can do to help their child learn how to maintain the social connections they do make.
We are all social animals and we live in a social world. Some of us may thoroughly enjoy making social connections and others may view it as a chore or an intrusion into our world. There are children on the Autism spectrum who desperately want to have friends and others who need to be drawn out to be social or don’t seem to care. Whether your child cares or not, it is important to help him or her develop the social skills required to maintain basic relationships, whether it is with a friend, a grandparent or neighbor. These skills are crucial for any child’s future as they transition into adulthood and have to deal with an employer or a spouse.
We cannot sit back and expect that our children will know how to sustain a relationship once they have one – none of us were born with these skills. Despite the fact that social learning automatically begins at birth through observation and experience, all children need direct guidance in this area. Children on the Autism spectrum require even more instruction then their neuro-typical counterparts, instruction that is very specific and presented with lots of repetition.
For tips to help your child learn how to ‘make friends’ you can refer to this article, Autism and Social Skills – Helping Your Child Make Friends - and here are some strategies that will help your child sustain quality friendships that last.
- Encourage your child to be inquisitive – Once your child has acquired a playmate discuss the importance of taking an interest in what the other person does. Coaching your child to be appropriately inquisitive about their friend and teaching him to ask questions in a kind, courteous and sincere manner will help any relationship blossom.
- Teach conversation starters – Introduce your child to various ways to begin a conversation and keep it going. For tips and pointers you may want to check out this post from, Stephen Borgman, How to Teach Children With Aspergers to Start a Conversation.
- Introduce your child to friendship etiquette – Teaching respect, empathy, turn taking and perspective is often a challenge for children with Autism who do not have theory of mind but this is vital to the process. The article, 4 Tips to Expand Your Child’s Ability to Empathize, can help you discover some simple ways to build empathy in your child.
- Be your child’s social director. Provide ample opportunities for your child to engage socially by inviting her friends to the house. This provides your child with a social laboratory to practice in and you with an opportunity to observe your child in action and casually give pointers and tips as needed.
- Be your child’s movie director. Consider videotaping your child when he has a friend over. Watching the video after the fact enables you and your child to observe how he engaged with his friend. Stopping and rewinding the video makes it easy for your child to look for things he did well and ways he could have done something differently.
- Ask “what if “ questions whenever the opportunity arises. While watching television or movies with your child, stopping the action and inquiring what he might do in a similar social situation can push them to think socially.
- Practice with your child. There is no such thing as practicing too much with a child. Constant repetition is what creates habits and ways of relating, especially those that don’t come naturally. Also, practicing in as many situations as possible is important because it will help your child generalize her skills from one circumstance to the next.
- Expose them to all children. Experts have proven that it is good for children with special needs to be integrated with normally developing children. Left to their own devices, a group of children on the Autism spectrum might easily retire into their individual worlds. Children with Autism should be exposed to social scenes that offer varied opportunities to interact. Exposing children to new activities where social skills need to be practiced such as team sports, art lessons, theater camp, local environmental programs, community service projects, the YMCA or mentorship opportunities are all great choices.
- Use breakups to your advantage. Remember that friendship is a two way street and that the outcome depends just as much on the social skills of the other child. This means your child may lose some of her friendships through no fault of her own, but don’t worry, all is not lost. Use the experience as a teaching tool, helping your child dissect why the relationship failed and identifying what, if anything, she or the other party could have done differently.
If you are persistent in teaching and modeling the basic social skills necessary for maintaining relationships throughout your child’s young life he will have a much better chance of social success in adulthood when relationships are even more significant for a satisfying life.
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What do you do to help your child maintain his or her friendships?
Potty training a normal, healthy child can propel any parent into a state of anxiety, overwhelm and exhaustion. Now let’s consider what potty training is like for a parent when their child is on the Autism spectrum? A child with Autism may have sensory issues that get in the way or they may not even understand what it means to use the potty. Here are some things to consider when potty training a child with an Autism Spectrum Disorder (ASD) to reduce the number of bathroom battles you encounter.
- Determine if your child is ready to be potty trained. Just because all the books say readiness occurs between the ages of 18 months to 4 years for a neuro-typical child it does not mean your child with Autism has the ability to do so. A developmental delay can carry over into many areas and postpone readiness. Does your child know when he is wet or has a dirty diaper? Does your daughter have a dry diaper all night?
- Find out what your child’s elimination schedule is. It does not take long to do this. Keep notes on when your child’s diaper is soiled or wet? Notice the time it takes your child to eliminate after he eats or drinks. Keeping a journal for three to five days will determine a pattern. Then you will know the times to focus on potty training the most.
- Do not punish the child for accidents. If your child has an accident remind them that is what the potty is for. Calmly clean up the mess with your child’s assistance, even if on a limited basis. Make sure everyone caring for your child uses the same approach as well. Mixed messages will not help.
- Does your child have the skills to undress and redress? If not this can make potty training more challenging unless you have the luxury to let your child run around naked for the next month or two. You will also need to make time for wiping up puddles and scrubbing carpets and upholstery.
- Do not give up – remain consistent. If your child does not catch on right away do not give up. It takes a few weeks for a new skill to be learned. If you keep switching from diapers to the potty this will just confuse your child even more. Consistency is the key factor when potty training. This goes for any child not just children with Autism.
- Make the potty and your bathroom user friendly. Eliminating any source of stress or anxiety will help your child relax about potty training. Let your child see the potty and get familiar with it before they are made to sit there. Consider writing a social story about the potty chair and what it is used for. This will help them become comfortable with the idea.
Remember children with Autism are more likely to take longer to learn a new skill so be patient and stay relaxed. If your child senses tension you may be in for more battles than you bargain for. To increase you chances for success you may want to check out my program, From Bathroom Battles to Bathroom Bliss: Potty Training 101, to get more detailed information and tips about toilet training your ASD child.
In my twenty plus years working with parents I have heard the following laments from many moms and dads more than once.
“My child struggles to relate to her peers appropriately.” or
“I’m concerned that my child can’t make friends.” or
“My child thinks all of his classmates are his friends but they really aren’t interested in spending time with him.”
And guess what? Not all of these children were on the Autism spectrum.
In order for our children to lead satisfying social lives the biggest lesson we need to teach them as they mature is how to interact with and relate to those in the world we live in. It is a well-known fact that children on the Autism spectrum often struggle more than their non-Autistic peers to make friends or expand their ways of relating to others. Being social is a learned behavior and ALL children need help acquiring social graces through direct instruction, role modeling and practice.
The social challenges that mark many individuals with an ASD become painfully obvious to parents as their child is presented with opportunities to be social. I recently had a parent share a story about her twin daughters, both with Autism, who celebrated their sixth birthday. Mom made sure to invite the students in her daughter’s special class as well as those from the mainstream classroom that they also frequent. Despite the fact that they were hosting this party from the comfort of their own home it was agonizingly clear to mom that her girls didn’t have the friends they came home from school talking about.
What is a parent to do when they observe the woeful limitations of their child’s social skills in settings such as these?
Accept the fact that social skills need to be taught and that you are the best one to do it. Parents often seek professionals or school personnel to accomplish this task but there is much a parent can do on their own. Here are six ideas to get you started.
1 – Determine what your child’s concept of a friend is. When young children begin making connections the adults in their lives start applying labels to those relationships. We might say to little Susie after she has engaged in some parallel play in the sandbox with another child in the neighborhood, “You have a new friend.” But does Susie really understand what that means? And is it really accurate?
2 – Define the meaning of friendship for your child. In order to clarify any misconceptions he or she might have we need to teach our children what a friend ‘looks like’, ‘sounds like’ and ‘acts like’. Making the word ‘friend’ a daily part of your vocabulary and taking every opportunity to describe what a friend is and does will benefit your child.
3 – Make the distinction between best friend, playmate, and acquaintance. Understanding these distinctions and how they can shift over time will help your child cope with the natural ebb and flow of friendships. There are many children’s books available on the topic of friendship at your local library. Find one that describes the difference between the various types and levels of friend relationships.
4 – Create a social skills curriculum you can use at home. Start with the basic skills every child needs breaking them down into baby steps that are adjusted to your child’s level of understanding and learning style. Begin by focusing on one skill at a time and don’t proceed to the next one until you feel your child understands the concept. In addition to talking and reading about specific friendship skills use other visuals such as PECS when necessary. If your child has a speech therapist ask him or her for suggestions or hire a parent coach to help you.
5 – Practice, practice, and practice friendship some more. The concept of friendship is not something you introduce your child to and talk about for a day or two. The notion of friendship takes a while for any child to comprehend completely so using every day life circumstances to encourage your child to practice their friendship skills will help make it more concrete for them.
6 – Provide a good balance of encouragement and exposure. Some very young children with Autism will appear not to care about having friends but it is important that they understand the basics of developing such a relationship for the day when they do start to care about having friends. Finding just the right balance between gentle encouragement and not pushing too much is a challenge. You know your child best so listen to your gut and let it guide you as you maintain the goal of a satisfying social life for your child.
Remember this is a life long process and none of us, even as adults, ever master the skill of developing and maintaining friendships completely. So be persistent and have patience with your child as well as yourself.
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What do you do to help your child develop social relationships?
Plugging into Your Tween with Autism
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I was trying to get a new appliance to work the other day and thought I had a lemon. I read the manual but maybe not as thoroughly as I should have so I read it again. I seemed to be doing everything right but thought I would check the connection. It was then I realized that I did not have a good connection because as soon as I pushed the plug all the way in the motor began to hum and all was well.
If only it were that easy to revive our connections with our children. Unlike electronics and appliances, children do not come with a manual to help us trouble shoot and guide our efforts. We all want to have the best connections possible with our offspring but sometimes the business of life gets in the way. Also, as our children grow and become more independent we sometimes find ourselves drifting apart. If you find yourself preoccupied with the demands of life, don’t worry it’s never too late to make a shift. To answer the question, “Are my tween and I drifting apart?” – you may want to take a moment to reflect on the following.
Have you been plugged into your child lately – maintaining good eye contact without multitasking in their presence? If not, you have not been interacting and communicating fully. Recognizing the desire to revive your nurturing relationship with your teen on the Autism spectrum is the first step. If you don’t want to risk the quality of your relationship all you need to do is take step number two with these six simple suggestions to help you maintain the strong connection you desire.
- Brush up on your listening skills.
- Schedule special times with each child even if for only 5-10 minutes.
- Eat together as a family on a regular basis.
- Use the time you spend in a car together to communicate.
- Create a regular family game night.
- Unplug the electronics every so often and plug into each other instead.
Don’t be too hard on yourself – we all get distracted and need an occasional reminder so here is your nudge. Go ahead and try the following strategies and watch the results you get – it’s as simple as pushing in the plug.
Will a diagnosis of an Autism Spectrum Disorder limit my emotional connection to my child? As parents we all want to cuddle, kiss and hold our children. Not only do they feel good to hold but they smell good too – most of the time. But what is a parent to do when their child pulls away from their touch, refuses to be embraced or won’t hug back?
There is a misconception that children with Autism are incapable of showing affection but many have found they are indeed capable of expressing love, they just do it in non-conventional ways. Another theory is that children with Autism feel emotions so fiercely that they are easily overwhelmed with what to do with them. All children are wired differently and your child’s emotional availability will depend on where he or she lies on the Autism spectrum.
The pain of realizing your child may never display the level of physical affection that you had hoped for is not to be treated lightly. It is a loss of an ideal you held about parenting and should be addressed. Accepting it as fact is the first step that will help you move beyond and open yourself up to other signals that may not look the same but carry the same message.
All parents anticipate a reciprocal response to their physical displays of affection but if that is all you seek you can set yourself up for constant disappointment. Recognizing that your child may never initiate a hug or say I love you is very troubling to accept. As unfortunate as this is, it is a situation that calls for a major shift in perspective. As a parent in such circumstances, you have to lower your expectations, increase your patience and develop a special mindset in order to cope. Here are some suggestions to help you get started.
- Invade your child’s world.
As adults we tend to make the mistake of expecting our children to conform to our world and respond as we do but a much more productive approach, especially with a child on the Autism spectrum, is to invade their world first. The more a parent can experience the world through their child’s Autistic lens, the more easily one can understand and accept their child’s unique way of relating. Making an effort to enter into your child’s world will help you discover the particular nuances in his behavior that signify expressions of affection and a real connection to you.
- Play detective.
The possibility of a meaningful and loving connection lies in your ability to look upon your circumstance as a new adventure and adopt the role of investigator. As you become alert and watchful for those slight gestures and signs that say, “I care” – you may be pleasantly surprised at what you find. That blank stare focused in your direction may be saying a lot more than you think.
Here are some clues to look for when trying to determine how your child shows affection:
- Occasional eye contact
- Letting you play with or touch a favorite item
- A slight touch or pat
- Drawing you a picture
- A certain noise or tone of voice
- A handshake or a high five
- Squeals of laughter
- Keep hope alive.
Never give up that your child will be able to learn how to show affection towards you because affection is a learned behavior that all children can be taught to some degree. Once you have dissected how you child relates to her environment you can begin to pull her into your world and teach her other ways of relating. Children on the Autism spectrum just need more time and practice to learn how to express themselves spontaneously.
As you gather clues and develop a greater awareness of how your child relates to everything around him or her you will detect revealing patterns. Being alert to behaviors that show a level of caring, even if minimal, will help give the ongoing bonding process with your child a boost. Eventually you and your child will find your own rhythm, your own special dance that says ‘I love you’.
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How do you recognize affection from your child?
I want to welcome Shannon Cherry, a parent of adorable twin daughters who both have an Autism Spectrum Disorder. Shannon has graciously accepted my request to interview her here on my blog so she can share some valuable information about air travel with children on the spectrum that she has acquired from personal experience.
If you are a parent of a child with Autism who is thinking about air travel with your child in the near future then you must read on to see what Shannon has to share.
You and your husband made a decision to fly internationally with your twin daughters, both on the Autism spectrum, to England for the holidays. Knowing how difficult air travel can be these days for anyone, can you share how you came to this decision?
Well, my husband is British. And his family is there. Neither of his sisters – and their families- had met the girls so we wanted it to happen. Plus, the girls were 5 years old, so it was easier to take them out of school for an extended time (1 week plus vacation) without an issue from the school. The time was right.
Most parents would agree that taking adequate time to plan and prepare for a trans-Atlantic flight is crucial. How far in advance did you make your plans and did you feel the time you had to prepare was adequate?
We started preparing in September for a December trip. And although we feel our trip overall was a success and joyful experience, is there ever enough time to plan for everything when it comes to your kids who are on the spectrum?
Besides the ‘normal’ things you have to do for an extended trip to another country, you also have to take into consideration how your kids will react to changes and new experiences. Although the girls travel well on the road and have ridden on an airplane earlier in their lives, we just weren’t sure what to expect now. I made sure we had some things (like special snacks and special toys) that comforted and entertained them. And we worked with their teacher to prepare them too.
You previously shared with me that you found some resources related to traveling with a disability that most people don’t know about, what exactly did you find?
The first thing every parent with a child on the spectrum needs to know is their rights as an air traveler with a child who has a disability. Even though you may not like it, indicated that your child has a disability when you purchase their ticket. (And purchase as early as you can!) This can open doors that otherwise would not be open to you.
Many airports have an Autism program, to help kids on the spectrum. And even more, if you call in advance, will let your kids do a mock airport boarding: meaning go through security and even board an airplane. We did this with our girls – and good thing, too! We discovered that the girls couldn’t handle the ‘avatar’ (full body scan) x-ray machines, but were fine going through a metal detector. So we we arrived at security for our real flight, we explained the situation and TSA was very helpful and accommodating. (After all, the LAST thing you want to have is a child have a meltdown during the security check!)
All airlines have someone who deals with disability compliance. Contact them weeks before your flight and they will help you based on your child’s needs. For us, it was preboarding, as well as seating preference, but for other kids, it may be boarding after everyone else. They can also help with issues at security, too.
There are special lines for Customs for people with disabilities. Use them to avoid standing in long lines. (Yes, we got questioned about the disability since none of use were using a wheelchair. It is narrow-minded, but the more we all do this, the better educated they will be!)
If you had to evaluate these resources how would you rate them as a parent of children with Autism? Which were the most helpful?
I think knowing your rights is probably the most helpful of anything, without them, you cannot justify any accommodations your family may need.
What was most surprising thing about your trip?
The girls were brilliant. They loved to travel and behaved very well.
From beginning to end, what was most challenging?
The most difficult issue for us was that the airline had changed our seats, essentially separating our children from us. (Apparently, when you choose a seat, it is not guaranteed!) Often times this means that you are relying on the kindness of other passengers to switch seats. I didn’t want to take the chance, nor stress out my kids, so I dealt with this before hand. You can read the story about what happened in the Chicago Tribune at http://www.chicagotribune.com/travel/family/sns-201112220000–tms–takekidstp–f-b20111222dec22,0,614675.story
Again, knowing your rights made all the difference in a positive outcome.
What did you and your husband do to take care of yourselves so you could be at your best for your girls?
For my husband, Matt, it’s sleeping in, which I ‘allowed’ him to do often. For me, it was a few short breaks with a cup of tea. We also are able to ask for help from each other when things are getting too stressful for one of us.
What advice do you have for other parents that are considering air travel with children on the Autism spectrum?
1) Know your rights
2) Plan ahead
3) Know that there will be hiccups, as much as you plan
4) Plan some time for yourself too
Thank you so much Shannon for sharing your experience with us and providing such valuable information about air travel with young children on the Autism spectrum! Congratulations on a successful trip – your preparation and planning really paid off!
Do any readers have other great ideas to add to Shannon’s? If so, please share your comments in the box below.
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