When Living With Your Autistic Child Becomes ‘Unsustainable’

I went with my daughter to see a mental health advisor. Her anxiety is out of control, her sleeping is poor and her eating almost non-existent. It is obvious my daughter is struggling and is on the cusp of being diagnosed with a mental health condition. The more my daughter talks and the more the advisor hears about home life, the more she shakes her head.

“This cannot continue,” she says with a sigh. “This level of anxiety is unsustainable.”

“Until the root cause of the difficulties is addressed,” she says looking right at me, “your daughter is never going to get well.”

“You already seem to know this. Will you help your daughter?”

She is asking me to put one child above another.

My son with severe autism is destroying his sister mentally and keeping them together is now “unsustainable.”

I had a long chat with the social worker. The hours of screaming, the self harming, the level of control that rules the entire house: it is killing my family. The smearing, the lack of sleep, the isolation: it is destroying my marriage. The violence and anger is damaging both physically and mentally to us all.

She gives me a stark choice: either one child will end up in a mental hospital or the other will need residential care.

Continuing as we are is not an option.

Then there are the parents. Both already on antidepressants, both exhausted and drained and barely functioning.

Love is not the question here: living is.

What do you do when caring for your autistic child becomes “unsustainable” for the rest of the family?

What if his unrelenting need for sameness means others are denied change too? What if his lack of sleep is physically exhausting everybody else? What if his meltdowns are so severe they are putting others at risk? What if his care needs mean siblings are denied having friends over and can never be part of the community they live in? What if his rigidity is so severe that nobody can have a haircut or even a new pair of glasses? What sort of effect does that have on a family?

Is love enough when damage is being done daily to everyone, both mentally and physically, by keeping the child with autism at home with his family?

He is my child, my heartbeat, my every breath, my all.

I can’t let go of him, but I am not sure I should keep him either.

This is not bad parenting; this is life with severe autism. 

I am doing my best with insufficient support. So many families are in the same place.

Love is not the question, living is.

Can I actually admit to myself that living with my own autistic son is “unsustainable”?

The Autism-Friendly Products We REALLY Want

When your child has autism and disabilities, you start to notice as they get older that some products you’d like to buy just aren’t easy to get hold of — or available at all. And, if they are, you can guarantee that there will be a disability price tag attached to it! You know that one where they multiply the normal price by ten, adding lots of extra zeros?

My friend and I often joke that if we were entrepreneurial enough, we’d set up a store for the disabled community with an array of products at affordable prices. Someone is missing a trick! There are so many products not on store shelves that I know would sell! And why are we so often ripped off?

So businesses, if you ever feel like listening, here are just some of the things parents would like to be easily available to buy…

Bigger Nappies and Swimming Nappies

In the U.K., we are lucky to have the NHS continence service, but not everyone is entitled to free nappies and not everyone gets the amount that they need. There are bigger nappies available online, but they tend to come with the disability price tag and with fewer in a pack than standard-sized nappies. It would be great to be able to buy bigger sizes at a reasonable price in supermarkets. I actually started a petition about this in the U.K. last year, so watch this space!

Similarly, we have the same issue with swimming nappies. I’ve just bought my 5 year-old son, Brody, one online that is washable, but in the U.K. it’s very hard to buy disposable swimming nappies for older children and adults.

Bigger Ride-On Toys

Brody learnt to use a ride-on toy when he was nearly 4 years old. He is tall and now, sadly, too big for them all. He is unable to use pedals. I contacted Little Tikes last year to ask if they would consider making a bigger Cosy Coupe because it breaks my heart when Brody tries to climb into his younger sister’s. And I know I’m not alone. I have seen lots of people online with the same predicament so many times.

Little Tikes response was that there wasn’t a big enough market for it. Hmmm… I beg to differ!

Bigger Push-Along Toys

Bigger push-along toys, like buggies, for children who are late to walk or just like to push toys along would be great. My son was a late walker and needed support for a long time. These days he loves push-along toys, like his toy lawnmower and buggy, but they are fast becoming too small for him.

Cartoon Character Clothing

Character clothing tends to stop at a certain age. The age when a neurotypical child is no longer interested in having “Bing Bunny” or “Peppa Pig” on a T-shirt. It’s sad for parents who can’t buy their child a T-shirt with their favourite character on it because they are typically “too old” for it. Someone please make them in bigger sizes!

Whilst we’re at it, can we make the head holes in T-shirts a little bit bigger for children who have slightly bigger heads, like my son?

Trouser Pants with Nappy Space

Yes, I’m back to nappies again! There are a limited number of stores where I can now buy Brody trousers because a lot of trousers for children his age have less room around the bum and not enough space for a nappy. They also have really skinny legs on them.

We need trousers — jeans, joggers, cargo pants, shorts and pyjama bottoms — with higher and elasticated waists. I’m lucky there are a few stores I can rely on at the moment. But I know this will get harder as he gets older. Then I’ll have to refer to a catalogue with no doubt overpriced trousers and a disability price tag. Sigh!

Trouser Pants with Reinforced Knees

If your child falls over a lot like mine, you’ll get through trousers very quickly. Is there such thing as trousers with reinforced knees? If not, please can some entrepreneurial genius design and sell some for our kids?!

Sensory-Friendly Clothes

A friend of mine struggles to find her 12 year-old daughter short-sleeved jersey dresses with no buttons, textures or other embellishments. As seam-free and decoration-free as possible, please!

Can we add seam-free socks to this list?

Bigger All-in-One Pyjamas with Feet

Is it just me or do these seem to stop being available at around 4 years of age? We struggle with bedtime wear. A lot. Brody won’t keep a duvet on him and it’s hard to guess whether he is too hot or too cold (he is unable to tell us). Fleecy all-in-one suits with feet on have been brilliant in the past, but we now can’t find any in his size.

Safe Beds

Brody is fortunate enough to have a travel bed currently on loan from a charity. It has high material walls that are soft and is low to the ground. This means that when he bangs his head, which he frequently does, he doesn’t hurt himself. You can also zip the side of the bed up if you like so that he is asleep in a safe space. Brody has epilepsy, as well as autism, so a safe bed is essential.

The bed is fantastic, but it costs more than £4000. I’ve seen other safety sleeper beds advertised online for similar prices. The cost is ridiculous! I don’t know how they even begin to justify it.

You can add specialist seating here too! My friend’s son, who has complex disabilities, has a bean bag with effectively a Velcro strap attached to it. It cost £600. It’s not hard to make, so why the high price?

Specialist Shoes

If your child needs specialist shoes, you know that these come at a price. Thank God for the NHS in the U.K.. Brody’s piedro boots cost around £120.

If your child has an AFO or splint, you’ll know finding shoes that they fit into is a total pain!

There’s a gap in the market here!

Bigger Strollers

Someone please design a bigger stroller that you can buy in stores that doesn’t have that disability price tag. I promise people will buy it. Do it now, please!

Bigger Car Seats

Again — come on! Why does a seat that looks identical to the typical, slightly smaller version cost so much more money? Bigger car seats with a five-point harness that don’t cost the Earth to buy. They. Will. Sell!

Inclusive Play Parks

When playgrounds are built, so often children with autism and other disabilities are left out of the thought process. Bigger swings, equipment for wheelchairs, sensory play equipment. There are so many things that could make play parks inclusive. Yet, most aren’t inclusive in the slightest. This is why we love our own garden so much. There is play equipment Brody can use and we know he is safe, which is paramount.

But surely all children should be able to enjoy their local playground?

Rant over!

What do you think?

What would you add to the list if you could?

Maybe one day, if we all shout loud enough, someone out there will hear us and help us parents out.

Please?

 

Julia, Sesame Street’s New Autistic Character, to Appear at Sesame Place

The newly introduced — and already beloved — Sesame Street character, Julia, will make her debut “live” appearance this Saturday, April 22, at Sesame Place in Langhorne, Pennsylvania.

Sesame Place holds their “Autism Awareness” Day event annually, in partnership with Variety, a local charity for children with special needs. As an autism-friendly event, the park will make adjustments to its usual operations, including low-sensory character shows, designated quiet areas and adjustments to noise levels. Julia will be walking around the park, welcoming attendees.

The event runs from 11 a.m. to 5 p.m. and is free for members of Variety. Parking is $25. Check out this link for more information.

Sesame Place officially opens for the season on April 27.

Autism Eats — (How to Start) Dining Out with Autism

Being a parent of a child with autism can be hard. I do not think this is a statement that breaks any new ground. We miss many of the things that on the surface seem so simple and enjoyable, but in practice are not.

There may be no more stressful situation for an autism family than a trip to a restaurant. It is anything but simple and enjoyable. There can be anxiety over being in a new place, sensory overload due to the sights and sounds, favorite foods are not always on the menu and the server may take too long bringing the food and check. Children with autism might not want to sit still, preferring instead to bolt for the door, flop on the ground or play their iPhones too loudly.

The tension builds: Other diners may look in our direction and the restaurant does not know how to help.

Many autism families decide the stress of dining out outweighs the enjoyment and so choose not to go. We were clearly one of these families that succumbed to the stress and limited our restaurant outings.

My wife Delphine and I started Autism Eats because we missed going out and wanted to enjoy time with our family and friends at a restaurant. We knew that other autism families felt the same way.

So three years ago, we created the Autism Eats restaurant model that ensures success and enjoyment for all guests.

Restaurants are carefully selected and must have the right physical layout for us to create our non-judgmental zone. Everyone in our room “gets it,” so there is no need to feel like all eyes are on us or to apologize for anything. All behaviors are welcome.

Families are greeted at the door to confirm that they made the right decision to join us today. They are escorted to a family table or a community table as a natural way to meet new friends. Reservations and payments are made in advance, and a variety of kid and adult food is served buffet-style. There is no waiting. Kids receive toys, and lights and background music are both turned down.

All potential obstacles to an enjoyable experience are accounted for and corrected.

To date, we have had 25 brunch, lunch and dinner events in independent and chain restaurants in multiple communities across Massachusetts, California, Pennsylvania, Virginia, Illinois, Florida and Hawaii. In the next two months, new communities in Georgia, New York, Rhode Island, Illinois, Missouri and New Brunswick will hold their first Autism Eats events.

More than 2,000 individuals with autism, their parents, siblings, extended family, friends, teachers and caregivers, have come together for Autism Eats restaurant events. We have watched people enjoy a typical restaurant outing with their families, make new friends, arrange playdates, schedule rounds of golf, network, and discuss the news, sports and politics. Wow!

If you are looking to bring your autism community together, meet new people and have fun, then starting an Autism Eats club is an easy way to do it.

We will provide you with the step-by-step instructions, from selecting the restaurant to menu planning, community outreach and running the events. We will also promote your events on the Autism Eats website, take reservations, collect payment and pay the restaurant.

If you are interested in learning more, please contact Autism Eats directly.

Our upcoming events include:

  • 3/18: Dinner at Fireside Restaurant, Chicago, IL (sold out)
  • 3/20: Dinner at Red Rooster Harlem, New York, NY
  • 3/21: Dinner at Chelo’s, Providence, RI
  • 4/12: Brunch at BJ’s Restaurant, Victorville, CA
  • 4/ 24:Dinner at Maggiano’s Little Italy, Boston, MA
  • 4/25: Dinner at Williamson Bros. Bar-B-Q, Marietta, GA

Do You Want to Build a Snowman?

Back in December, on a cold and snowy night in Pendleton, Oregon, 6 year-old Billy Larsen found out that school was cancelled for the next day. While children are typically happy to have a snow day off from school, Billy—who has autism—was upset because the snow day meant the Christmas party that his class was supposed to have the next day wouldn’t happen either. And he had been really looking forward to it.

After he’d finally fallen asleep, Billy’s mother Holli tried to think of a way she could cheer up her son so he wouldn’t be so upset in the morning. She thought of how much he loved snowmen, and considered going outside to make one but, she admitted to The Register-Guard, she was tired and didn’t want to go out in the cold and snow. Her husband was already sleeping because he leaves early in the morning for work.

So, on a whim, she posted a message on the local classified’s Facebook page that she would pay $20 to anybody who came over to “build my special need son a snowman right now. Want him to be surprised in morning. School was canceled tomorrow & Christmas parties, etc. This may help him.”

She didn’t know if anybody would read the ad. But about a dozen strangers showed up to create snowmen, including at least one family and some buddies looking for gas money. They pointed their vehicles to the front yard so they could see, and started to gather snow.

Unfortunately, the snow was too powdery to build with. Luckily for Holli and Billy, the intrepid builders didn’t give up. Instead, somebody suggested they use the snow that had been cleared in a local Dollar Tree parking lot. They went there and filled three pickup truck beds with the packable snow and brought it back to the Larsen’s yard.

Somebody had brought a carrot for a nose; somebody else had brought some hats. They found rocks and sticks for eyes and mouths. It was a team effort from complete strangers, and some even refused the $20 in the “Christmas spirit.” As one of them said, ““We were just happy to help this kid out for Christmas.” Holli was overwhelmed by their effort and generosity.

What did Billy think the next morning when he saw the army of snowmen in the front yard? “It was awesome!”

Sometimes it really does take a village.

2017 NFL Pro Bowl to Be Autism-Friendly

This Sunday, the NFL’s Pro Bowl will take place in Orlando, Florida. As the location of Disney World, Universal Studios, SeaWorld, and more, Orlando is one of the most family-friendly destinations in the U.S. And it’s about to get a little friendlier.

For the first time, this year’s Pro Bowl is striving to be as autism-friendly as possible. This includes sensory tools, a designated quiet room, and specially trained staff to help families. The staff will include both security personnel and Camping World employees, who will learn more about autism and the ways that they may be able to assist autistic families during the game.

Special Sensory Sacks will be available to all families, thanks to efforts by the group A-OK Autism in Tulsa, Oklahoma, which worked closely with the NFL. These sacks will contain a stress ball, noise-cancelling headphones, and a stadium wristband where the wearer’s seating information can be written down in case they get lost. The sacks will also contain a lanyard and badge that a person with autism or other developmental disability can wear to let others know, for example, if they are unable to speak. Of course, the badges can be worn or not worn at the individual’s or family’s discretion.

“Our goal is to make the game as family-friendly as possible,” Anna Isaacson, the NFL’s senior vice president of social responsibility, told the Orlando Sentinel. “We want to see if this is something the fans take advantage of and, if so, whether we can extend it to the Super Bowl and perhaps share it with the rest of the league.”

The NFL got the idea of an autism-friendly game from the Seattle Seahawks, which has six players on the NFC Pro Bowl Roster. The Seahawks first teamed with A-OK Autism in October 2015. Seahawks General Manager John Schneider and his wife have a child with autism, and they helped institute the same autism-friendly amenities—including the trademarked Sensory Sacks—at Seahawks Stadium then, with much success.

The program will be announced to Pro Bowl attendees on Game Day, and they’ll get instructions on where to go to pick up the Sensory Sacks.

The idea behind this is that there isn’t always a visual way to recognize if someone has autism,” Isaacson said. “And it’s hard for people who aren’t experienced with it to recognize that certain behaviors are part of the autism spectrum. We just want to make sure we’re creating a safe and comfortable and inclusive environment.”

In addition to the Seahawks, the Philadelphia Eagles and the Indianapolis Colts have also been working to make their games and facilities autism-friendly.

Sensory Sundays Program Expands to 54 Chuck E. Cheese Locations

Back in November, we told you about a Chuck E. Cheese in Attleboro, Massachusetts, that started offering “Sensory Sundays” on the first Sunday morning of every month. We’ve just learned that the program is being expanded to include 54 total locations in New Jersey, New York and New England.

Now called  “Sensory Sensitive Sundays,” these monthly events feature dimmed lights and quieter music. Chuck E., the gaming-restaurant’s namesake mouse mascot, along with his costumed friends, won’t be walking the floor, greeting kids, like they usually do. Additionally, outside food will be allowed, to cater to kids with special dietary needs and restrictions. Specially trained staff will be on hand in case any assistance is required.

The complete list of participating restaurants is here. All host their Sensory Sensitive Sundays from 9:00 to 11:00 a.m.

Dallas Symphony Orchestra to Hold Free Concert for Those With Autism

The Dallas Symphony Orchestra (DSO) announced that it will be performing a concert designed especially for children and adults on the autism spectrum and with developmental challenges on February 5, 2017. The concert will start at 2:30 p.m. at the Morton H. Meyerson Symphony Center, with a pre-concert event beginning at 1:30 p.m.

This is the second My DSO Concert—the first was held on April 10, 2016, and had 1,100 attendees. “The response to the first My DSO Concert was overwhelming, joyful and affirming,” said Jonathan Martin, President & CEO of the Dallas Symphony. “There was a buzz of enthusiasm from the audience as the music was performed, and gratitude from families that they could enjoy a Dallas Symphony concert without stress or worry.”

The February concert will be approximately one hour long, with no intermission. While the performance will be a traditional orchestra concert, there will be accommodations for people “with acute sensitivities.” These include “quiet rooms” for people who get overwhelmed by the noise; “fidgets, ear plugs and eye covers” to help prevent overstimulation; and TV monitors broadcasting the performance on the lower levels of the Meyerson for those who need to leave their seats.

My DSO Concert is presented in partnership with the Autism Treatment Center, Best Buddies, LaunchAbility, My Possibilities, The McDermott Scholars at the University of Texas at Dallas, UT Southwestern Medical Center and The Warren Center. The original motivation behind the concert was Music Direct Jaap van Sweden, who has a son on the autism spectrum and discovered that music helped him communicate.

Doors will open an hour early for a resource fair with the partners mentioned above. There will also be an “instrument petting zoo” for people to get familiar with orchestra instruments, as well as a participatory music-therapy experience provided by “Sing Your Way Home.” Patrons are also invited to stay after the concert to meet and mingle with other guests, as well as symphony musicians, at a casual reception.

Tickets to the concert are free, but must be reserved in advance. Tickets are available starting on January 5, 2017 by calling 214-TIX-4DSO or visiting the concert website at mydso.com.

Planes, Trains & Automobiles: Tips & Tricks for Holiday Travel

Tonight, as I sit here writing a plethora of lists for our family holiday travel, I posted a poll to a parenting support group on Facebook asking for tips and tricks for surviving holiday travel with special needs kids. And boy, did they ever come through.

Even with planning, travel is stressful for everyone. When you add a special needs child who is out of their element, things can get hectic really quickly. If thinking about travel sends you to the corner in the fetal position, then check out these lists. While all kids are different and need different things, there might be something golden in here for you. Safe and happy holidays to you, road-wary (and potentially road-weary) travelers!

Pre-Travel Tips:

Some kids don’t need to be prepped beforehand, while some need a step-by-step itinerary to help them prepare for an impending trip. How best to do this is really up to you. Does your child prefer a pictorial itinerary, countdown calendar, or packing list? If you’re flying for the first time, it can be super helpful to give a detailed description of what to expect on the day and maybe even act out the adventure from the ticket counter to the landing.

Traveling by Plane:

  1. Act out the day to normalize it for your kid.
  2. Tell the desk agent at the gate that you need to pre-board due to special needs. This will help you board the plane first.
  3. Use a car seat if you can, as it can offer a bit of comfort and familiarity.
  4. If you use the car seat, ask for a seat with extra space so there is enough leg room.
  5. If you are screen-time-friendly, be sure to bring your child’s favorite device, extra chargers, batteries, power packs and noise-canceling headphones.
  6. If your kid gets motion sickness, pack a plastic bag, wet wipes, paper towels Dramamine, and motion sickness patches or bracelets. Don’t forget a change of clothes for you and your child.
  7. Snacks can be your friend.
  8. Bring something to suck on or chew, like gum, to help with ears popping. Suckers are also a great way to keep hands and mouth busy.

Traveling by Train:

  1. Budget for a little exploring time. Take your kid for a tour around the station and check out the train. If your kiddo is a train enthusiast, this could be a lot of fun.
  2. Practice the sandwich game with your kids: If you’re traveling with another adult, have the kid(s) between you and them, and have the kids come up with fun sandwich fillings that they can pretend to be.
  3. If you are screen-time-friendly, be sure to bring your child’s favorite device, extra chargers, batteries, power packs, and noise-canceling headphones. The headphones are great to reduce stimulation, as well as to be courteous to other travelers.
  4. Board games, puzzles, and paper and pencil games are also good ideas if your child enjoys them.
  5. Pack snacks and meals, especially if your kid has special dietary concerns.
  6. If your kid gets motion sickness, pack a plastic bag, wet wipes, paper towels, Dramamine, motion sickness patches or bracelets.
  7. If you’re traveling overnight, consider getting a sleeping compartment.
  8. Use a map and itinerary to countdown the station stops.
  9. Not all trains have changing tables available—especially ones for shorter trips—so bring your own changing pad and supplies. Don’t forget a change of clothes.

Traveling by Automobile:

  1. Schedule bathroom, snack and meal breaks. Know your route and where all of the rest stops are ahead of time.
  2. Use social stories beforehand to prepare your child for the trip.
  3. Leave for the trip very early or drive overnight if your kid will sleep in the car.
  4. If you are screen-time-friendly, be sure to bring your child’s favorite device, extra chargers, batteries, power packs, and noise-canceling headphones. Load up your tablets with favorite and new-to-them games and videos. If your kid loves YouTube train videos or car washes, make sure you have enough to last double the length of the trip.
  5. Bring a camera along for your child to take their own pictures and videos.
  6. Games and books and music are all very helpful:
    1. License plate game
    2. Car Bingo
    3. Mad libs
    4. Trivia cards
    5. Joke books
    6. Audio books
    7. Favorite songs
  7. If your kid gets motion sickness, pack a plastic bag, wet wipes, paper towels, Dramamine, motion sickness patches or bracelets. Don’t forget a change of clothes for you and your child.
  8. Bring a portable potty, toilet paper and plastic waste bags.
  9. Bring bag of “new to them” toys and activities. Our family picks up cheap thrift store toys and games and doles them out a little bit at a time.
  10. Take regularly scheduled breaks. You can use a visual timer to let your child see the progression of time until the next break. During breaks, have your child do big movement exercises and stretches.

Do you have any tips to share?