Tomorrow Is Too Long to Wait for Inclusion

Holiday Travel Checklist for Parents of Children with Special Needs


By Sara Bell

The holiday season is the busiest time of year on the roads and in the skies, with travelers trekking long distances to spend quality time with family and friends. There are many things that can go wrong for the ordinary traveler, ranging from delayed flights to lost luggage, annoying fellow passengers, and more.

It’s no surprise, then, that traveling with a child with special needs can place even the calmest, coolest, most collected parent on edge. This checklist will help you be prepared for any holiday travel frustration that might come your way.

Preparation Makes All the Difference

Many children with special needs have trouble with changes in routine, crowds, loud noises, confined spaces, and similar environmental conditions – all of which are common when traveling. Some parents of children with special needs suggest showing your child videos of travelers going through airport security, creating a book that discusses the sights, sounds, and experience of traveling, or even conducting a complete run-through in the airport or bus terminal. Knowing what to expect can help your child feel calmer and less anxious when travel day arrives.

Make It an Adventure.

Certainly, the hustle and bustle of a long travel day can be overwhelming for children with special needs. But presenting it as a day of adventure can make it more fun for them. For example, a good friend of mine has a son who is on the autism spectrum and she was recently telling me that she got aLuke Skywalker costumefor him to travel in over Thanksgiving. At the airport and on the plane, he pretended they were on a mission to save Princess Leia. His mom told me that being Luke Skywalker gave him a confidence boost which helped him manage his anxiety during the parts of the trip that were hardest for him—for example, waiting in the noisy airport terminal.

Consider Dietary Restrictions

Does your child have dietary restrictions that make it difficult to find suitable options at restaurants?

Packing safe snacks is critical, but this can pose challenges when traveling by air. Call ahead and discuss your child’s specific dietary requirements with the airline ahead of time. If possible, make arrangements to take your own or have meals specially prepared. Pack snacks in see-through bags or containers to make it easier to get through security.

Pack All the Essentials in Your Carry-On Bags

Because you never know what delays or circumstances you might encounter, packing a carry-on bagis essential for a seamless trip. Your carry-on bag should contain a change of clothes, any medications your child may need (enough for several days), documentation from your child’s physician, copies of prescriptions, and any personal items that help your child cope if they have sensory issues.

And of course, a laptop or tablet are always great to have on hand. For example, my friend’s son isa math and science whiz. She told me she gave him her laptop on their Thanksgiving return trip and told him she’d love to have his help planning out their holiday decorations. She asked him to figure up how many lights they’d need for their tree, how many grandma would need for her tree, and so on and shared an online calculator with him so that he could check his work. It proved to be a great way to keep him occupied.

Plan Breaks to Allow Your Child to Recharge or Burn Energy

Long days spent surrounded by unfamiliar people or strapped in an unfamiliar seat for extended periods of time can be overwhelming for any child. Plan adequate breaks to allow your child to burn off energy or simply to get a reprieve from the chaotic travel schedule whenever possible. Once you’ve checked in at the airport and gone through security, for instance, allow your child to play to expend any excess energy before he’ll have to spend several hours seated in a confined space. Be sure to take along travel-friendly activities that can help occupy your child’s hands and mind during long road trips or flights.

The fact is that traveling during the holiday season is stressful for almost everyone. But it doesn’t have to be more stressful for your family because you’re traveling with a child who has special needs. Planning ahead and preparing your child for what to expect can help ease anxieties and make no obstacle insurmountable this holiday season.

Photo Credit: David D/Flickr

Sara Bell grew up in a family of teachers—her dad has taught high school for 30 years and her mom is a university professor. At EducatorLabs, she puts the lessons they instilled in her about the importance of curiosity and learning to great use. When she isn’t working, she enjoys reading, writing, and knitting.

4 Ways Parents of Children with Special Needs Can Prepare for a Natural Disaster

4 Ways Parents of Children with Special Needs Can Prepare for a Natural Disaster

By Sara Bell

From 1994 to 2013, natural disasters killed 1.35 million people. While not all natural disasters can be predicted, the best way to protect yourself and your family is to prepare for the worst ahead of time. For parents of children with special needs, this is especially true. Knowing how to take swift action is the best way to ensure their safety in any natural disaster.

Here are a few ways parents of children with special needs can prepare.

Prepare an emergency kit. Pack an emergency kit, which includes clothes, bottled water, etc., for each member of the family. As notes for a child with special needs, you’ll want to be sure to pack medicines and other needed medical supplies, wheelchair batteries, food for service animals, and any other regularly used items that won’t be readily available in the aftermath of the disaster.

Practice your getaway plan. Some natural disasters may require that you and your family leave your home and take shelter elsewhere. As this guide on wildfire safety notes, it’s best that people with disabilities practice their evacuation plans ahead of time to ensure they can get to safety as quickly as possible. If your child has mobility issues, you may even want to designate an alternate route for getting out of the home, in case your planned path is blocked.

Pinpoint the safest areas of your home. Depending on the natural disaster, different areas of your home will be the best places for you and your family to ride out the event. Make sure you find places in your home that can accommodate your child with special needs. In its guide on disaster preparedness, the Red Cross offers advice on what people with disabilities can do to protect themselves in different kinds of natural disasters. For example, in an earthquake, you’ll want to be sure your child can get under a sturdy piece of furniture. If that isn’t possible and your child is in a wheelchair, lock their wheels and cover their head with a hard object. In a tornado, the Red Cross recommends getting yourself and your child to the “lowest floor or below-ground area of your home.”

Fill out an emergency form. Of course, some natural disasters strike with little warning. It’s possible that when trouble arrives your child will be at school or you’ll be at work and someone else will be in charge of getting your child to safety. These tips on preparing for an emergency recommend filling out an emergency information form on your child. Keep this form with your child’s belongings at all times so that their caregivers or emergency responders will know what medications they need, who their doctors are, and how to reach you as quickly as possible.

Natural disasters are scary for everyone who experiences them. But when you’re a prepared parent, you can help ensure your family is safe from harm.

Sara Bell grew up in a family of teachers—her dad has taught high school for 30 years and her mom is a university professor. At EducatorLabs, she puts the lessons they instilled in her about the importance of curiosity and learning to great use. When she isn’t working, she enjoys reading, writing, and knitting.

Macyn’s First Day of First Grade

This article was posted with the author’s permission and was originally published on The Lucky Few.

Today Macyn started first grade. Today I walked the three blocks to her school, lingered longer than any other parent there, and walked away leaving one third of my heart behind.

This growing up and getting big and being in someone else’s care for the majority of the day is happening just a bit too fast for this mama bear.

I watched Macyn hang her new sparkly backpack, the one that is almost as big as she is, on the hook outside of her classroom and follow her teachers and new friends inside. I looked through the door, slowly coming toward me until it latched shut and I could no longer see. Then I ran to the window, stood up on my tiptoes, cupped my hands around my eyes and watched as she sat on a green square on the rug. When I turned to walk away, I was crying. My husband asked what was wrong. I told him nothing… and everything. A thousand reasons to be a sobbing mess, yet not one I could articulate.

Macyn is in first grade.

As we start a new school year, we know its unfolding will be different for us than it is for most. I have a daughter who doesn’t fit into the common mold that (unfortunately) has been created for us. She’s a little different. She talks a little funny and doesn’t always know how to make her wants and needs known. She’s a pretty messy eater. Day to day tasks take her a little longer. She’s a little different.

But she’s a lot alike.

She felt the same butterflies your kid felt on the first day of school, and she talked about her teacher and potential new friends all morning as we got ready. Macyn loves to make new friends. She loves music and dancing. She likes watching movies and jumping on her trampoline. Her favorite foods are doughnuts and cake (although her mom and dad don’t let her eat those things very often). She doesn’t like to be alone, and she gets sad when other people are sad and happy when other people are happy. She’s a lot like the rest of us.

The thing that irks me though, the thing that gets my blood boiling is that most people only see the ways she’s different. This is especially obvious when we start a new school year.

And I get it. I think most of us are prone to seek out people who are similar to us. It’s comfortable and predictable and easy. I’ve seen how Macyn gets excited when she meets a friend who is “like her,” another child with Down syndrome.

But I’m learning that I am the best version of myself when I get uncomfortable and seek out relationships with people who are very different than me. People who challenge my thinking. People who look and act differently than me and in so doing open my eyes to the world around me, a world that I’m otherwise prone to ignore or overlook in everyday interactions.

Sure, it’s easy, and oftentimes it’s nice to be with people who are just like us. But life is so much richer when we allow ourselves to be stretched and challenged—when we take the time to learn from one another.

Macyn has taught me so much. She’s opened my eyes to a world I didn’t know, and I would have missed out on it if not for her. She has been my key to the gate of a secret garden, where the beauty of a flower grows from the dirt, where hard work is necessary and growth is slow and the fruit of our labor is so very, very sweet.

But being a parent of a child with Down syndrome has also opened my eyes to weeds and thorns and the occasional bee sting, not because of Macyn, but because of a society only willing to see how she’s different. There is adversity in any garden. There is a struggle happening within every bloom.

Sometimes, school is one of those struggles. School is a tricky part of raising a child with Down syndrome.

You see, she is in a Special Day Class (SDC), a learning environment apart from the other first graders. We would like her to be in a general education class with them, but this is not an option… at least, not without a little fight.

Macyn went through three years of preschool and then a year of kindergarten. In our four years of school, we’ve learned that this little fight for first grade is not going to be easy.

When it comes to our local public schools, I am discovering that when Macyn steps onto the campus, people are not only noticing Macyn’s differences and how they might hinder her education… they’re also worrying about how Macyn’s differences could hinder the education of the other kids. And this, my friends, simply sucks!

It’s such a strange feeling, loving my daughter with every ounce of my being and then feeling the need to convince people of her worth. When we start a new school year, one of the things at the forefront of my mind is the need to prove to the teachers and kids at school that Macyn is worthy of being there.

And she is. All kids with different abilities are worthy of being in class beside your kid(s). All kids with different abilities have great, great worth. And so what if their behavior is not ideal, if they’re in first grade and still learning the alphabet…so what!

As we start this school year I find myself wishing that when I walk into the office, almond-eyed girl in one hand, IEP in the other, people would greet us like this:

“What do you need?”

“We can do that!”

“Let’s get creative here.”

“Nothing is too tricky for us.”

“Anything to keep Macyn in our class!”

And then, the parent of a typical child would overhear the conversation and chime in…

“We are so excited for Macyn to be in our class!”

“Look, Sam, a new friend.”

“She can sit by Sam—he’d love to help her with her alphabet.”

“Gosh, this must be difficult. How can I help?”

At the start of a new school year, I feel as though I’m stepping onto a battle field alone with the goal of proving my child’s worth. MY CHILD!

I do think people mean well, and they do the best they can with the systems in place. I’m so thankful for friends sending me texts to say that they’re praying for us as we start school. I have friends who are teachers beside me in this battle. I have countless friends who have a child with Down syndrome; with one glance, they see the worth of my daughter. These people were perfect strangers to me until the day we were crying on each other’s shoulders because we “get it,” and not many people do.

So, today was Macyn’s first day of school.

She put on her new uniform and slung her new sparkly backpack over her shoulders and we walked to school. As I spied on her though the classroom window, I thought of all the times the Lord gently reminded me to hand her over to Him. I thought about a sick five-month-old being carried back for open heart surgery. I thought about a feisty two-year-old learning to walk. I thought about a confident three-year-old running into her preschool classroom, ready to take on the world. And then I watched her today, as she sat down on the rug with the rest of her classmates, and I know God’s got her. God created her, God sees her worth and not only does He have my back on this battlefield—He’s gone before us, as well.

Here’s to a great year—one that will have its fair share of thorns and weeds and lots of hard work, but one full of fragrant flowers and sweet, sweet fruits.

Photo Credit: Heather Avis

Heather AvisHeather Avis is wife to her handsome and hardworking man Josh, and mother to the adorable Macyn, Truly and August. After working as an Education Specialist she found herself as a full-time stay at home mom when she and her husband adopted their first daughter, Macyn, in 2008. Shortly thereafter, in 2011, they adopted their second daughter, Truly. And in 2013, their son August was born and came home to be theirs. Heather currently resides in Southern California where between oatmeal making, diaper changing and dance parties she is writing her first book and using her hit Instagram account @macymakesmyday, to share the awesomeness of all things Down syndrome and adoption.  She cares fiercely for the underdog and believes the beauty of Jesus is found in the most seemingly uncomfortable places. She’s a hugger and would love nothing more than to sit across a table from you sipping an Americano and delving into all things awesome. Heather can be found on her blog, The Lucky Few, and on Instagram.

An Overlooked Resource – People with Disabilities

An abstract close-up photograph of a brightly coloured fabric with swirls.

Sometimes in the search for resources to help best educate students with disabilities one resource goes overlooked, other people with disabilities! Doctors give their opinions. Therapists whether physical, occupational, speech, or another kind recommend resources. Parents un-doubly perform their own research and bring up their results with the aforementioned professionals.

All that proves great but I feel to exert an even more comprehensive effort try reaching out to other people with disabilities. Living with a disability inherently gives a perspective no degree or training program can teach. A perspective rooted in real life experiences, valuable experiences to learn from. What worked in the person’s educational career? What didn’t and how do we learn from those mistakes to avoid making them again with the current generation?

When I started writing my memoir Off Balanced I aimed to empower current students with cerebral palsy (CP). Growing up I saw my cerebral palsy negatively, feeling embarrassed about standing out and frustrated by my inability to blend in. During my college years my viewpoint rotated 180 degrees. I came to embrace my disability and see the positives. Off Balanced hoped to let current teenagers quicken their journey to embrace their disabilities.

Now during the writing process feedback on my manuscript led me to realize anyone in the current teen’s life albeit a teacher, parent, or peer could also find the read useful. In fact I recently enjoyed an engaging email conversation with a father of a 14-year old with cerebral palsy. Off Balanced left the father shedding tears because he saw many similarities between my story and his son’s.

Throughout our email conversation I offered my best advice. Unfortunately, logic only extends so far. As I stated in one email message, “That’s part of the problem with teenagers. You can have the best advice but sometimes they only accept it once they learn by experience.”

This provides an example demonstrating the limits one person’s story’s resourcefulness provides. Thankfully though, I am armed with a varied network. I encouraged the father to join the weekly cerebral palsy Twitter chat #CPChatNow I co-host every Wednesday at 8pm ET with Reaching for the Stars Foundation’s Student Ambassador Blake Henry.

Our #CPChatNow community contains a diverse group including current high school students with cerebral palsy, current college students with CP, and young professionals with cerebral palsy. With Wednesday, March 25th National Cerebral Palsy Awareness Day we decided we wanted to do something special for the chat that day. We want you the educator, special needs parent, or caregiver to join us and ask us any questions. Allow us to become your resource.

While our collective expertise lay with cerebral palsy, we will do our best to answer all questions. To join in follow these steps:

1. Sign into Twitter a few minutes before 8pm ET on Wednesday, March 25th.

2. Search Twitter for “#CPChatNow.” Make sure you switch the search results from “Top” to “All.”

3. Ask away! Make sure to include “#CPChatNow” in your tweet too.

For anyone without Twitter interested in participating, leave your questions on the CPChatNow Facebook Fan Page. I do a weekly recap for each chat on my own blog and will include all answers to Facebook questions in the recap so you can read the answers. I look forward to your questions!

Photo Credit: Philippa Willitts/Flickr

Cerebral Palsy Day Twitter Chat

Allow us to become your resource.

4 Strategies for Parenting Children with Special Needs in a Digital World

parenting special needs

It seems that everywhere we turn, there is another article written about children and their use of social media. Conversations swirl about what we, as parents, should or shouldn’t let our children do and see. It’s challenging, to be sure, and we worry about our kids. We worry about what seems to be their inability to sustain real conversations. We worry about their use of correct grammar, spelling and punctuation in a world that increasingly recognizes texts and tweets as valid forms of communication. And we worry that this digital world is not preparing our children to have significant and lasting social relationships.

To complicate matters further, most parents are “digital immigrants” (people who were born before the existence and/or widespread adoption of digital technologies) raising “digital natives” (people who have known such technologies since birth). Many of us are doing our best to immerse ourselves in the online world so that we can guide our children through its complexities; but we are learning as we go, and the world continues to change rapidly.

So what happens when you add a child’s learning issues or disabilities into this mix?

 A fifteen-year-old young man with Aspergers syndrome shared with me that Facebook helped him to improve his social skills. This platform eliminated the challenges that he faces in trying to read facial expressions or body language and it gives him the time needed to think through an appropriate response. (Interesting, this is the exact reason why he does NOT like the fast pace of Twitter.) Facebook allows him to engage at his own pace, reducing his anxiety and enabling him to enjoy the benefits of social relationships, a challenging arena for many children and teens with autism spectrum disorders.  

It’s fascinating to consider that the very tools which we worry will interfere with our children’s ability to develop interpersonal relationships may, in fact, help those who otherwise struggle in conventional social settings. There are many other advantages, too. However, we must be prepared to guide our children’s use of social media thoughtfully and intentionally.

1. Diligently monitor content

All children need supervision; no matter their age, no matter their need. I learned some great advice from a veteran teacher: “This is middle school. You may think your children are ready to be independent, but they need you now more than ever. Resist the urge to let them go.” This applies all the more to social media. Know where your kids are, who they are interacting with and do not be afraid to connect with them in these same spaces. You are still the parent. You are not spying.  It is your responsibility to watch your children.

2.  Make your children aware of dangers

Talk to your children about online predators. Talk to them about online bullying.  Open the lines of communication. Encourage them to talk to you about anything suspicious they encounter and do not be afraid to cut them off if you notice something inappropriate. You are still the parent. It is your responsibility to watch your children.

3.  Set limits

Even if these tools help your child to socialize and/or build relationships, it is not healthy to spend hours upon hours a day staring at a screen.  Just as you might limit the amount of television your child watches or the amount of video games he or she plays, you should also establish limits on the use of social media. It’s ok, you are still the parent.

4. Trust your gut

You know your child best. If something feels off, it probably is.  Trust your instincts and don’t second-guess yourself. You have to decide if an online presence is safe and beneficial for your child. And you have to decide when it ceases to be. You are your child’s greatest advocate and it is your responsibility to guide, support and teach your child to advocate for him or herself.  If social media can help, use it.  If not, avoid it. You are still the parent.

Photo Credit: Paul Walsh

Do you have any suggestions to this list? Tell us about them in the comments section below!

Dancing Backwards And In Heels: Parenting A Special Needs Child

dancingBy Debbie

It is hard being a parent of a special needs child. Read Debbie’s account of feeling under the microscope and at the same time being on a pedestal. A version of this article was originally published at Fumbling About In The Dark.

“And then there’s Adult Protective Services,” the school nurse said. “Crazy, huh?”

Crazy, huh. I restrained myself from asking her, “Do you realize what you are saying?” I don’t think that, unlike previous remarks, this was calculated. I think she was acknowledging that she was just one overzealous mandated reporter in a system that rewards such behavior at the expense of parents like me. She also mentioned that other school nurses would be worse than her. If they are, then those of us with special needs kids are in deep trouble.

Parenting is never easy. There’s always things that come up that one would never expect in a million years. You love your children, but sometimes you want to disavow any knowledge of them. “That kid? Never saw her before.”

Parenting a special needs kid, however, is, to borrow a pro feminist slogan, “dancing backwards and in heels.”. A parent with a special needs kid is being scrutinized in a way that a parent of a “normal” child can neither begin to imagine nor be willing to put up with.

From the moment Kid O entered the world, I’ve been subjected to the worst kind of scrutiny. Because she was a preemie who weighed only 3 lbs, 10 oz, her birth was reported to the Department of Public Health. I was terrified when a nurse showed up. She was nice about it, but I understood the implication. Underweight premature babies were assumed to be given birth to by mothers who were poor, ignorant, and who hadn’t sought out prenatal care, and, in a word: neglectful.

One day, as I was getting ready to take Kid O on the train to see my folks, two public health nurses, a man and a woman, practically barged through my door. The man would not take “no” for an answer. I uttered utter a mild protest, stating that the regular public health nurse had told me that she would be the only one coming around. He told me that that nurse was on vacation. Even though I knew I had rights, I was afraid to say “no.” Much to my shame and horror, he insisted I hand over Kid O for a surprise inspection. I watched, speechless, as he took her over to her bassinet and undid her diaper. It was only after that that I had the wherewithal to call the Department of Public Health and canceled subsequent visits.

My neighbor, who had had a near perfect homebirth and a nice, large, full term baby, brought by literature on pre-eclampsia because she felt I needed to take responsibility for Kid O’s prematurity. She was smug in her knowledge that her expensive birthing class had produced nothing but perfect births and perfect babies. She was certain she was a far superior mother, so imagine her surprise when she couldn’t console Kid O one morning Months later she apologized to me because one couple in her birthing class had a child with CP, and were being forced out of their condo on account of the baby’s screaming.

Now, granted, it’s damned uncomfortable listening to someone whose only means of communicating distress is to go all primal. Imagine how it impacts the parents of such a being. There are times when I still get so rattled that I feel like a shooting gallery duck.

Babies can be fussy. They are wet. They cry. They are tired. They cry. They are hungry. They cry. Ordinarily if you put a baby in their carseat, they will fall asleep. Same thing if you put them in their stroller.

Kid O had such a disorganized nervous system that these tried and true methods did just the opposite. Put her in her carseat and she would cry hysterically to the point of throwing up all over herself. That didn’t stop until she was around four.

People assume that if someone requires help with toileting or feeding or dressing that they are physically weak. Kid O is not without her ways of resisting something she does not want. Just because she doesn’t have a lot of muscle mass, doesn’t mean that being kicked by her wouldn’t hurt. The girl packs a mean mule kick.

Some mornings it takes two of us to get her into her wheelchair. One to bend her legs and keep her from extending her hips, and the other to strap her in. There have been times when I have had to deal with Kid O turning herself into a human board. Eventually I would prevail, but not without an average of twenty minutes of cajoling and heavy lifting, which would leave me gasping for air.
To a casual observer, it probably looks like Kid O is screaming because her mother is abusing her. .Instead, I am being abused by people who, over the years, have jumped to painfully wrong conclusions including an allegation of sexual abuse

I don’t begrudge women their perfect children. I just always wanted the same thing. And, barring that, at least not to be thought of as if I were some criminal. Unfortunately, my circumstances are not that unusual. I have read of instances of special needs children removed from their parents simply because these people are flawed human beings. For some reason people think they can raise Kid O better than my husband and I can. I had one woman start a whisper campaign against us. Why? Because on the morning she came over, we were feeding our daughters *gasp* toast and jelly and not a full breakfast. And so it goes.

People have no idea how difficult it can be to guide a special needs child to adulthood. They have no idea how incredibly stressful it can be. They contact DCFS without considering how unnecessary and how hurtful it can be.

The last time DCFS was called out, we hired an attorney to join us at a meeting at Kid O’s school. My husband made a point of mentioning my high blood pressure. The teaching staff received his meta message loud and clear, “If anything happens to my wife…” I was grateful for his protectiveness. I could see Kid O’s teaching team shift from being on the offense to realizing what harm they could cause. Do people not consider how devastated Kid O would be if she were removed from the two people who love her and understand her better than anyone in the world?

When I am not being considered a criminal, I am being placed on a pedestal. When I fall from that pedestal, people become incredibly disillusioned with me. Neither place is comfortable. I have never asked for people to worship me. Respect and compassion would go a long way to acknowledging me and other parents of special needs children. We are neither sinners nor saints. We are just people who happen to face enormous challenges every day. And, hopefully, with a tremendous amount of grace.

Photo Credit: Elizabeth

You can follow Debbie on Twitter @MissShuganah.

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