Next Step Therapy Blog: ‘Special Needs Parents – Please Make Good Choices’

Tracy 1Tracy Cowles, CEO and owner of Next Step Therapy, submitted the following article – ‘Special Needs Parents – Please Make Good Choices.”

*Dear Readers: There are several statements in this post that, taken out of context, could be contentious. Please read the entire post, keep everything in context, and remember the spirit in which it is written – as a guide to assist parents who have children with special needs make the most out of their experiences.

A story came out in the media last week about yet another airplane being diverted and people being removed from the plane due to inappropriate behavior. The gist of the story was that a mom and dad took their fourteen year old autistic daughter on a flight that was several hours long. The family had paid for coach/economy seats, and were seated in coach/economy. Lucky them, they even got three seats together!

At some point during the flight, the mother asked the flight attendant for a hot meal for the daughter. The flight attendant explained to the mother that hot meals were only available in first class, but that snack boxes were available for purchase. The mother reportedly told the flight attendant that because her daughter was autistic, she was picky, and would only eat hot food. She demanded a hot meal, and told the flight attendant that if her child didn’t get what she wanted, she was likely to have a “meltdown,” and potentially scratch people. The attendant brought the child a hot meal (violating every airline policy and procedure on the books.)

The pilot then diverted the plane, made an unscheduled landing, and tossed the family of three off the plane. The reason for ejecting them? Because the mother made a threat of bodily harm, and the airlines have clear guidelines regarding removing potential threats from airplanes. The mother is now claiming discrimination because her child has special needs, is suing the airline, and wants all airline staff to be trained to deal with the autistic. God spare me.

I am a Speech Therapist. I spent twenty-five years of my life working with people with communication disorders. I now own a pediatric therapy company. Our thirty-eight staff members work with four hundred clients at a time – all of whom have some type of “special needs.” I have a big heart for those with issues, and I genuinely wish that the world was a better place for people who don’t quite “fit in.”

I wish that when a child has a meltdown at Walmart, other people would not be so quick to judge the parents. I wish that we lived in a world where people in wheelchairs with obvious disabilities were greeted and talked to like the human beings they are, instead of being ignored. I wish that every child on the autism spectrum could have a teacher with a degree or certificate in autism – not someone who read a book or went to a two day conference. I wish that insurance companies were easier to deal with. However, I am seeing a disturbing trend, both at our business, and in the media. Some parents of special needs children are not just demanding “equal” treatment, but are demanding “special” treatment.

There was recently a social media article about a family getting on a plane who had a child with a severe peanut allergy. The parents wanted the plane to not serve peanuts on the flight, and to make an announcement that nobody on the plane could eat anything with nuts on the flight. The airline said no. The family took to social media and threatened a lawsuit.

Let’s think this through for a minute. If this child is so medically fragile that someone eating peanuts ten rows behind him could kill him, would you put him on the plane? If he can stop breathing from peanut dust, how can you put him on the plane? The person sitting in his seat 20 minutes prior probably ate the peanuts – the plane is not steam cleaned and disinfected between flights. So, are the parents exaggerating the seriousness, or are the parents stupid? The kid just sat for two hours in the terminal at the airport waiting for the flight – nobody within a 30 foot radius ate a candy bar with peanuts or peanut butter? Cut me a break.

Disney World has also been the subject of tons of issues over the last year, and is being sued by a group of parents who have autistic children. Apparently the “Happiest Place on Earth” is not the happiest place for some children with autism. I’m shocked. Kids with a propensity for requiring a set schedule, can’t deal with change, and have sensory issues find Disney overwhelming? They find waiting in line for a ride with four hundred other sweaty, smelly, tired people stressful? Who doesn’t?

Disney, and other parks, have made most of their rides “handicapped accessible.” They put in ramps or elevators to get people to the rides. Then, they started offering “fast passes” that you could buy or sign up for that allowed you to get in the “special line” – the one with no waiting. Then, they told people with special needs that they, and the people they came with could all get in the special line with no waiting. Then they told the autistic community that they and their kids could avoid the long lines too. Guess what happened? People started to go to Disney in groups of 18 with one person in a wheelchair so that all 18 could get in the no waiting line.

Interestingly enough, even though the statistics say that one in 85 children is on the autism spectrum, families were coming out in droves to use that no waiting line. So, Disney had to set some rules. The last I checked, people with a physical handicap could still get the pass and use the special line, but only with three other people. Oh, and the suing parents of Autistic kids? Search for it on the internet – autism suing Disney. Just read it. “AST has cognitive disabilities that prevent him from understanding the passage of time. He is unable to accept that he must ride the ride later with a “fast pass.” His disability prevents him from being able to be idle or “kill time” while waiting.” For the love of….

Folks, to an extent, I get it. From the moment of your child’s birth, you have had dreams and fantasies in your head. You pictured taking him to Disney, and envisioned the wonderful pictures you would have of him hugging Mickey. You knew that he would talk about the experience for years to come. You couldn’t wait! But, you didn’t get that kid. His life has been hard, and a struggle for both you and him. But, you know what? Being epileptic isn’t any fun either. Should Disney remove all of the strobe lights on their rides so the epileptic can ride too? Having migraines is debilitating.

Should Disney eliminate all music so that the people with migraines are less likely to get one? How about the people that have had skin cancer? Should Disney remove the sun, or should they just put a roof on every area of waiting lines? What exactly is our definition today of “special needs?” Just who exactly qualifies? That Disney lawsuit mentions “cognitive disabilities.” I assume that means low IQ? If so, then shouldn’t every person with an Intellectual Disability get to use the fast line? And, what is the cut off? If the IQ is 72, yes, the fast lane, but 76, oh no! You get the slow line. How would people prove it?

How about the lady with bladder control issues? She has to pee every two hours. She can’t be expected to wait in a line for an hour or two either, can she? What about the person with diabetes who needs to do an insulin test every few hours? Do they get to go in the speedy line too? You know what? I think that all of these folks should be allowed to go in the speedy/fast/no wait line, plus a few dozen more illness, disease, issue and handicap diagnoses. You know why? Because now everybody is in that line, and the regular line is empty. Heck yes, now that I’m thinking about it, let’s let everybody who is getting chemotherapy and radiation, those with a doctors’ note saying they have a thyroid disorder or fibromyalgia, and all the pregnant women get in the line too. Because they fatigue easier. And, fatigued people shouldn’t have to stand in line. Hey, let’s go crazy, and maybe let all the families with kids under 5 who pinky swear that their kid didn’t get a nap get in the line too – ‘cause they are tired and cranky and are going to have a meltdown in line as well.

People with disabilities and issues have, from the beginning of time, had to make decisions about what they could and could not do. The American Disabilities Act basically states that businesses have to be “accessible”; meaning that you have to be physically able to get into it (ramps, elevators, grab bars). The American Disabilities Act also basically states that you or your child can not be discriminated against because of their disability – it means that they have to let you in, and provide the SAME service or goods to you. The ADA does not mean that the world needs to change every aspect of everything to make sure that you and your family have a great time no matter what you do.

Parents of special needs kids need to make good choices. If your child can not tolerate a two hour car ride without a meltdown, you have no business taking your child on a six hour flight. If your child will only eat certain things, you need to have them on you – not walk into a restaurant and demand a food item that they don’t sell. And, if your child is not capable of standing in line, understanding the reservation system (we get this ticket and come back in an hour) and cannot be taken for a snack or to another attraction in the meantime….they are not ready for Disney. Don’t take them. I understand that you’ve had it in your head for five years that 7 is a wonderful age to take a kid on that trip. But, your child may not be ready for that trip until he is 12, or even 15. This is about them, and their abilities, not your fantasy world.

I know that some people will feel that I’m being harsh – but there is a universal truth here that parents of special needs kids need to understand, for everyone’s benefit. Almost every meaningful positive change in our society has come about by education, example, and enlightenment – not by force. Women were given the right to vote, not because they shot people, but because they spoke eloquently and wrote beautiful pieces showcasing their fine minds. They convinced people that allowing them to vote was the right thing to do. African Americans gained equal rights in the 1960’s through sit-ins, peaceful protests, and the eloquence of people like Dr. Martin Luther King. Not through fear mongering. Not by threatening lawsuits, most of the time. Likewise, if we want our special needs kids to be treated by society as equals, as people who are deserving of time, service, and attention, we need to do so through education and example.

We cannot force people to like and respect the Autistic through lawsuits. We need to teach people to like and respect the Autistic for their abilities, and personalities. People who don’t know someone on the Autism Spectrum may think that the Autistic are “weird” and “unfriendly.” Those of us who do know people with Autism often find their thought processes fascinating, and their senses of humor fantastic.

Unfortunately, every time an incident like that one on the plane happens, and 90 other passengers are inconvenienced (missing connecting flights, being late) and the airlines have a huge unexpected expense (fuel for another landing and takeoff), the argument for including every special needs person in everything equally takes a huge hit. If I was a mom on that plane with a two year old who watched a fourteen year old get a cooked meal that was demanded because she was “special” and my kid started to cry, I would not be thinking happy thoughts about the Autistic. I would be thinking that Autistic people are clearly a pain in the butt.

So let’s go back for a minute to the group of people suing Disney. If you look up the lawsuit, you’ll find that the plaintiffs (the ones suing) are from all over the United States. At least two are from Ohio and Pennsylvania. So, these kids who can’t “kill time” or be idle, these kids that can’t understand time passage….how did they get from OH and PA to Florida? By car? How did the parents keep them entertained for the 18 hour trip? By plane? How did they manage the minimum of two hours in the airport, and the five hour flight? You want me to believe that your child can’t be managed in a line for an hour, but can be managed in a car for 18 hours or in an airport and plane for 8 hours. I call bull puckey. If I were the judge, I’d throw that lawsuit out just for that.

Folks, going to Disney requires standing in lines. Everybody knows that. Riding a horse requires trunk strength. Everybody knows that. Taking a cruise requires floating on top of the water. Everybody knows that. There are literally hundreds of thousands of people who have never been to a Disney park, and never will. Their lives are not ruined. People who don’t go to Disney do other things, and have other interests. Nowhere on the planet – not the Bible, not the constitution of the United States – does it say that everybody gets to go to the same places and have the same experiences as everyone else. It’s a ridiculous thought. People who know that they get motion sickness in a car or on amusement park rides probably shouldn’t book a cruise. If they do, they need to take motion sickness medications with them. If the meds don’t work, they need to be prepared to puke and stay in their cabin. They do not get to sue the cruise line because they didn’t have a good time.

My oldest son has played football for six years. Football is his absolute favorite thing in this world. He has passed up vacations to the Caribbean so as to not miss football practices. He has some talent, and is a leader on his team. For years, we took him to WVU and Steeler games so that he could see his dream close up. He turned fourteen, he grew to 5’6″, and he stopped growing. He is now seventeen, and is still 5’6″ – 185 pounds of pure muscle, and able to dead lift 440 pounds – but 5’6″ nonetheless.

Last year, he was pretty much devastated to realize that college and professional football are probably out of the question. He simply isn’t big enough. Professional teams now have full defensive lines of men who are 300 pounds. He would get injured in the first two games. We all know that. This year, he seems to have accepted that college and pro ball are out, is going to play his heart out for his senior year, and then plans to go to college without a football scholarship. My kid’s dreams pretty much got shattered, and his plans from when he was 12-15 had to radically change. It’s a shame. The kids’ heart is probably shaped like a football. So, who do I sue? Folks, there is nobody to sue, nor should there be. I am 5’4″, his dad is 5’8″, and there isn’t a relative on either side who is taller than 5’10”.

It’s genetics, and it can’t be changed, and all of the crying, whining, and begging the universe for a better outcome isn’t going to change a thing. Meanwhile, I also don’t get to try to convince college and pro football teams that for equality for all, each quarter the team needs to swap out the big players for the smaller players, and oh yeah, for every third quarter, the team needs to be all female. Because that is not what college and pro football is. My son is not being discriminated against because of his size. He is simply not qualified to play at the higher levels, due to his size.

I’m truly disturbed by these parents that are suing airlines and amusements parks, and God only knows who else. I hate the whole thing, but I especially despise the part where they demand that all staff who work there need special training. The peanut allergy suing people want the airline people to all be sensitivity trained regarding allergies, and the mom of the girl with autism who had a conniption over a hot meal wants all airline personnel to be specially trained in dealing with the autistic. But, for the most part, all service people who deal with the public are made aware of the Americans with Disabilities Act, and know that you can’t discriminate against people with special needs.

So, exactly what kind of “training” do these folks want service people to take? I’m afraid that what these parents are saying is, “I want staff, in every service venue, from restaurants to stores to hotels to airplanes to amusement parks, to be trained to drop everything and respond instantly to anything a person with special needs wants. No matter what it is.” I could just weep. It’s not the car dealerships responsibility to provide an allergy free, child friendly, and autism safe waiting room for your child. It’s the parents’ responsibility to monitor their child while they buy a car. And, if they know that their child will not be able to tolerate the place and the pace, the parent needs to make other arrangements – for a babysitter.

I have no doubt that some people will react to this article with comments of “See! People want the handicapped to be invisible. The author doesn’t think kids with special needs should go to places like Disney.” That is not what I have said at all. What I said was that parents of children with special needs must make good choices about their child’s developmental abilities, and what is appropriate for them. It isn’t that your child shouldn’t go to Disney – it’s CAN your child go to Disney, and truly enjoy themselves without violating the rights of everyone else there? If the answer is no, don’t give up on Disney – let’s work on it.

Let’s set smaller goals. Work on standing in line at the grocery store, the bank, at school, in the lunch line. Reward them for increasing increments of time that they can behave in line. Don’t do Disney first. Go to the local fair first – do they enjoy the rides? Can they stand in line for 5-10 minutes? If the local fair goes well, go to a small, more local amusement park. In our area, Waldameer in Erie, Pa., or Kennywood in Pittsburgh would be good choices. Before you spend $7,000 to take your family to Disney, try a day at a local place, where you can leave if you need to. Work up to that trip.

It floors me that people will take a kid with sensory issues and behavioral problems to a place like Disney, when they have never had their child sleep in a hotel. What if you get halfway across the country and your kid cannot calm down and sleep in a strange place? MAKE SMART DECISIONS, have realistic expectations and work towards your child being able to make that trip – don’t just decide that By God, you are taking that child when he turns seven, because that is what your parents did.

I mentioned that I am seeing this trend in our business too. Many of the staff have noticed that there seem to be more “demands” that cannot be met. For example, the clinic is open for limited hours, and there are only so many appointments available. We can only accommodate so many children, and we do not take away appointments from other kids because a parent “demanded” that time. Sorry. We also cannot force the insurance company to provide more therapy, or to pay for additional services. We gladly submit and resubmit the reports, but we don’t make the final decision for approval. We do our best, but there are situations when we simply cannot make things work. Therapists do take days off, take vacations, and recently, we have had several maternity leaves. These situations work themselves out, and there is usually another therapist to cover, but we have experienced “demands” in these situations, too. We understand that you need to cancel sometimes, so please extend that understanding to the therapist, too.

Special needs parents: your child is special. They are special to you, and the people closest to you. They are special to me, and my entire staff. They may require special accommodations at school, or need a handicapped accessible room at a hotel. However, your child is not special to the businessman from Minnesota who is trying to get back from a New York City business meeting. Your child is no more special in this world than my child is.

This new trend of entitlement for special needs kids (wanting things for your kid that other kids don’t get, wanting everything to be free, always wanting the best seat, always wanting your child to go first, taking a child to a place that they can’t tolerate and ruining it for all of the people present) and parents threatening to sue people is NOT helping the cause of ensuring that our society embraces and has empathy for those with special needs. In fact, it is doing just the opposite – it’s making people withdraw from the very children that you love so much.

We need to educate people about what it is to be autistic. We need to explain to people how their brains work differently, and why meltdowns occur. We need to encourage people to see these kids for who they really are inside – kids with unbelievable imaginations, kids with extreme interest in the most esoteric of interests (World War II uniforms, fire extinguishers, vacuum cleaners, and conveyor belts), kids with incredible innate abilities sometimes related to music, computers and map reading. These kids are way more than the meltdown they had at the movie theatre.

But, when you take your child to a movie, knowing that they have difficulty in unfamiliar places, knowing that they can’t sit in the same place for an hour and half, knowing that loud noise sends them over the edge, and they have that meltdown, you need to understand that YOU caused that situation. Not the theatre. Not the movie making company. You. You also need to understand that for the other twenty-five people that were in the theatre, who had paid $50 for their tickets and popcorn, and just had their experience ruined – those people are not your friends. They won’t be marching in the Autism Speaks fundraising walk, and they won’t be donating money.

Beyond all of the above, I am truly concerned about the thought processes of some of these parents of special needs kids. Folks, is it really in your child’s best interest, long term, to take your child to the front of the line, rather than help them learn to wait in line? Eventually, that child is going to turn into a full grown adult. What happens when they’ve spent their entire life being told that they are too special to have to wait in a line, so they always get to go first? What happens when they go to a store, or a bank, or a doctor’s office and get told they have to wait like everybody else?

A grown up having a meltdown in a public place looks just like mental illness. The police will be called, and then an ambulance. This man-child is going to end up in a strait jacket, taken to the local psych unit, and EVERYTHING that sends them over the edge is going to happen to them in a short period of time – being touched by strangers, being in a strange place, being under fluorescent lights, being held down by six people to get a blood test to check for drugs. It is happening all across the country, even as you read this. A twenty-one year old man at a playground is not likely to be perceived as a person with developmental disabilities – they are going to be seen as a pervert.

You do your child no favors by demanding special treatment for them when they are children, because, as adults, the law is the law. Trespassing is trespassing. Harassment is harassment. Stealing is stealing. You can pull out the autism card and wave it as much as you want, but an adult with autism is expected to follow the rules just like anybody else.

Make good choices. Make sure that you are steering your child into adulthood, no matter what form that might take. Ask yourself if you are part of the entitlement crowd, and if that is in any way helping you or your child. Make good choices so that your child has an example of making good choices.

~Tracy


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