Rachel L. MacAulay

The Smith Brothers Use Boxing to Help Spread Autism Awareness

/by

liam-smith4Although Liam Smith suffered his first-ever defeat to Saul ‘Canelo’ Álvarez in the recent WBO light middleweight title bout AT&T Stadium in Dallas, he’s far from a loser in our eyes. Liam, along with older brothers Paul and Stephen, and younger brother Callum, is part of a dynamic professional boxing family hailing from Liverpool, England. In 2013, the family made history when three of the brothers claimed the British light-middleweight (Liam), super-featherweight (Stephen), and super-middleweight (Paul) belts at the same time. Younger brother Callum is also a boxer to be reckoned with, with many experts saying he’s the best of the foursome.

The brothers all fight with the word “Autism” featured prominently on the back of their shorts. They do it to honor their 15-year-old sister, Holly, who was diagnosed with autism at an early age, and to raise awareness of the condition. “People don’t really understand autism,” says Paul. “Holly is a lovely girl but she can’t speak or communicate. So in our own way we are fighting for her.”

liam-smith3

Posted on the Smith Brother’s Facebook page

Callum told Boxing News that, while the four brothers inevitably draw inspiration from each other, Holly is a big driving force behind them. “To see her battling through life every day, but to also see her happy, is inspiring,” he says. “We wear ‘Autism’ on our shorts to raise awareness and show support for other families dealing with autism, because for my mum and dad it is like a 24/7 job looking after her. When she was first diagnosed we didn’t really know what it was. So when someone asks, I explain it. We’re doing our bit.”

And their fans are grateful. Liam told HBO, as part of the hype leading up to the Canelo match, “The four of us try and put it out there about autism and raise awareness… Every single day on social media we get messages…my kids got autism and I think it’s unbelievable what you’re doing for autism.”

We absolutely agree.

K.M. Hodge

The Three Friends That Every Parent of a Child With Special Needs Requires

/by

three-friendsI am a lot of things: daughter, sister, wife, social worker, author, and mother to two boys. Becoming a mother to a child with autism changed me in a million different ways, mostly for the better. For almost a decade, I have struggled to be the best parent I can for my son and to help support him in being successful, as well as be there for my other son. I don’t always balance it well, but I always try.

As parents and caregivers to children with special needs, we are all experiencing this journey in a different way. What works for my family might not work for yours. While our experiences may be different, we all have one thing in common: We all need a strong support system. When I first became a parent to a special needs child, I thought back to the training as a social work student that I got in college. I learned how to help clients measure if they were plugged into their environment (i.e., belong to groups, clubs, church, etc.) and if they felt supported. It’s a really important exercise because there is a strong correlation between a strong support system and a happy/contented individual.

Our experiences may be different, but we all need a strong support system.

Click To Tweet

Take a moment to ask yourself these questions:

Do you get as much as you give out to the world around you?

Do you feel supported or pulled in several different directions?

Whether your child has autism, ADD, ADHD, or any other special needs diagnosis, you need support. You need help. Have you ever seen the movie, “28 days,” with Sandra Bullock? She is in rehab for drug and alcohol abuse and, as part of her treatment, she is forced to wear a sign around her neck that says, “Confront me if I don’t ask for help.” Consider this my reminder to you to ask for help, plug into the world around you, and make lasting connections with people who support you.

I could write a book about all the ways to do this but, for today, I just want to tell you about three types of friends. These are the ones who can help support you during these challenging times spent raising special needs kids, and having them saved my sanity.

  1. The ‘Been There, Done That’ Friend

This is the friend who has a child or multiple children with special needs who are older than your child. This is the friend who knows the ropes for getting services from your state or the school system, the best therapy places, and the tips and tricks to get your insurance to pay for stuff. This friend will help you learn the language that will make you an effective advocate for your child. They are also the one that gives you hope that things might get better. Hope is important.

My best friend has been instrumental in helping me learn about all the services that are out there. She validates my experience, offers a shoulder for me to cry on, and normalizes the feelings and emotions that come up. This is a vital friend to have!

  1. The ‘Same Stage’ Friend

This friend has a special needs kid who is the same age and/or gender as your own. This is the friend who is struggling with the same or similar struggles that you are, and they aren’t going to judge you or your kid when they do something that is considered socially unexcitable. This may be a mom, dad, or grandma that you met at a meeting, in a therapy waiting room, or in an online group. I have a few friends that fit this mold. We discuss things like problems with teachers, school districts, and insurance. You may not cry on their shoulders, but they wouldn’t bat an eye if you did. They get it! No judgement; just support.

These are the best kinds of friends to ask for ideas to problem-solve the newest challenge you and your child might be going through. They let you know about the free baseball games for children with autism or the autism-friendly restaurants or businesses. They know that doing simple things like getting a haircut or going to the dentist can be a scary prospect, and that having a plan with a good place to go ahead of time makes a world of difference.

  1. The Ally

This is the friend who loves you and your kid as is, even though they don’t have a child with special needs. This is the best friend of all of them to have, because their kids are often understanding and cool to your kid, too. This is the family that shows up to your kid’s birthday party when all of the classmates that were invited didn’t come. This friend does playdates on a regular basis.

I am very blessed to have a few friends who fit this bill. They are my coffee buddies and my weekly playdate: my make-me-laugh friends. Their same-age, neurotypical child also helps me to see what behaviors and issues are just “normal” age-related things, and not anything associated with my son’s diagnosis. The “ally” is the friend who kidnaps me and takes me out for a drink or a cup of coffee. I love this friend.

Easier Said Than Done

It is very hard to build up a support system. It takes time and, yes, energy to cultivate these relationships. It hasn’t been easy for me, but it has been so rewarding and worth it in the end. The important thing to remember is to step outside of your world and talk to other people as much as you can, even if it is just over the Internet. Though do try and get out of the house as often as you can, too!

Remember that you are important and need to be cared for. Don’t give up trying to find ways to care for yourself, as well as your child.

Kathleen Tarzwell

Fighting the Good Fight

/by

boxing-gloves-for-kathleen-tarzwell

“I will never give up.”

The phrase in itself is a huge commitment, compacted in a small sentence. It’s something I vowed early as a parent, and the meaning evolves daily with infinite responsibility. I don’t allow words such as “special” or “single” to define the parent that I am. I strive to be the parent defined by the happiness of my son’s smile and the quality of the life that he leads.

“I will never give up” is at the heart of every advocate, fighting for the world to see behind the barriers that have been built. Often, a child is hidden behind or buried beneath it all—a child who needs your help. My child.

Daily, my son faces new and recurring challenges that I help him overcome. We replace each roadblock we meet with a detour all our own. Not every day provides a solution. Sometimes the challenge is one that turns into a battle, a fight, an all-out war.

IEP Meeting. (Pause, inhale, exhale)

Yes, it deserves its very own sentence, and a pause for every parent to use a few choice words describing how those three small letters really make you feel. I’ve never attended an IEP meeting that did not age me at least seven or more years each time.

The most important advice I can give to a parent attending an IEP meeting is to think like an educator, but act like a parent. What this means is remember the school district is there for the budget, remember to take as much emotional thought out of the equation as possible, but remember lastly to never, ever, ever back down.

Stand your ground as much as possible, because you’re fighting for what’s right for your child. They’re fighting for what’s right for their balance sheet. It’s harder to say than to actually do, but focus on what you can change and don’t waste time on the rest.

There will always be another round, a rematch, the IEP meeting you’ve dreaded; it never ends. When you feel like throwing in the towel, get off the ropes and remember how far you’ve come. Never give up. Keep fighting the good fight.

Miriam Gwynne

The Day My Daughter Surprised Us All

/by

miriam-daughter2

My daughter had been in school for almost two years, but her anxiety was still as high as it was on Day One. I had chosen to defer her starting school so, although she was one of the smallest in her class, she was actually one of the oldest. The staff described her as a very able child, yet having great difficulty communicating—especially verbally. She was overly shy, selectively mute, and very anxious but kind, conscientious, and a great listener.

I loved her teacher that year. She was one of those amazing people who somehow managed to get the best out of all the unique children within her class. For the full academic year, she has pushed my daughter slowly out of her comfort zone and, on a very odd occasion, even managed to hear a little whisper from her when reading or answering a question.

But despite this progress, we were both well aware that the forthcoming class assembly would be very difficult for my autistic daughter.

The year before, it had taken months to prepare her, and it was decided that if she was able to take part at all that year it would be a massive achievement. She was given the only non-speaking part. We bought her costume weeks before, so she could get used to the feel, the material, and the idea of having a hat on her head. She was to be the explorer going on a bear hunt and ended up with the starring role. She walked when she was supposed to and stood still on cue. She looked incredibly cute, too!

Fast-forward to a year later and a whole new assembly, this time French-based. The entire class had a part to play, and it was initially agreed that my daughter would simply hold up a card on cue during the “months of the year” song. I was delighted when she wanted to practice at home and we found the song on YouTube and practiced holding that card up for the world to see. To me, she was going to be the best October any child could ever be! I knew I would not hear her voice on the day, but we practiced every song like our lives depended on it.

Then one day she came home even more anxious than normal. “Mum, my best friend has some lines to say and she is really struggling. I want to help her but I can’t.” We talked about how to help her friend by encouraging her, practicing with her when they were together, and telling her friend that she believed in her.

The next day, her teacher suggested something that seemed totally crazy. She asked my daughter if she would like to help her friend by saying some of her lines for her.

A teacher chose a child with severe anxiety and selective mutism to help another child with a speaking part for the school assembly! 

My little six-year-old daughter had not raised her voice once the entire year. She had whispered a few words and that was all. When I heard the teacher’s suggestion, I was wondering if she had any idea what she was suggesting.

She believed in my child. 

The day of the assembly arrived. My daughter held up that October card as proud as can be. The songs were lovely and the speaking parts so clear and well-rehearsed. The assembly was almost over when my daughter’s best friend came to the front to say, “Thank you for coming to our French assembly today…”

I watched as my daughter walked slowly to the front.

The room fell silent.

With a voice as beautiful and tender as an angel’s, she spoke clearly and as loud as all the others…

“We hope you enjoyed our songs and actions. From Primary 3, merci et au revoir.”

There was hardly a dry eye in the room the day my daughter surprised us all.

 

Rachel L. MacAulay

How One Boy’s Sensory Issues Helped Save the Day

/by

alex-perez2Unfortunately, vehicle fires on the Garden State Parkway aren’t all that rare. Yesterday, however, a small school bus carrying seven children with special needs caught on fire along the major highway. Luckily, a potential disaster was averted thanks to one passenger’s sensory skills.

The bus was on its way home from Mount Carmel Guild Academy in West Orange, N.J., when it first started smoking. Thankfully, 10-year-old Alex Perez, who has autism, noticed the smoke coming out near the bus’s front door. He yelled out for the driver, who pulled the bus over to the side of the road. Everybody onboard was able to get out safely, thanks also to first responders, who were already on the scene. One child was treated for breathing issues, but otherwise, everybody was alright.

Alex told CBS New York that he sat in a police car for about an hour, watching the fire from the fully engulfed bus spread to nearby trees. However, he doesn’t think he’s a hero: “I was like the second hero,” he said. “I was like the sidekick, I guess.”

What we love about this story is not just that Alex saved the day, but that he likely smelled the smoke because of his sensory issues. As his mother, Michelle Perez, said, “He’s high sensory, so he can pick up smells, sounds really quick.”

In other words, Alex’s sensory “disorder” turned out to be a good thing–for him, the bus driver, and six other children. That’s pretty ausome.

 

Rachel L. MacAulay

Autism Eats: A Supper Club for Autism Families

/by
autism-eats2

Photo from The Boston Globe

One of the hardest things for parents of a child with autism to do is go out to a restaurant as a family. Between possible anxiety over a new place, sensory issues with the environment, pickiness over the food, and the potential for a crushing meltdown present at any moment, many parents decide to just stay home. Some restaurants, such as Mary’s Pizza Shack in California, are helping by providing sensory kits to diners and looking for other ways to become “autism friendly,” but they’re not the norm. Enter Autism Eats.

Autism Eats is basically an autism-friendly supper club, started in 2014 by Leonard and Delphine Zohn. The Zohns had given up on going out to dinner as a family because their then-8-year-old son Adin was too unpredictable in restaurants. But they missed the “social aspect of dining out,” and started Autism Eats to have the best of both worlds: dine out with their family and dine out without stress.

“We knew exactly what didn’t work, so we felt if we could reverse that, we could bring a community together and allow everyone to be successful when they wanted to go out,” Leonard told the Boston Globe. “Many families feel it is not worth the effort, and they stop venturing out. It can be isolating and lonely.”

It sounds too good to be true, doesn’t it? Because the Zohns have firsthand experience on the issues associated with dining out with a child with autism, they know what to look for. They pick restaurants that can accommodate a large group, with management that’s flexible and understanding, and a setup that’s autism friendly. A variety of food is either served buffet-style or family-style, so that no child (or adult) has to wait to eat, and payment (including the tip) is taken in advance, so that nobody has to wait for the check when it’s time to leave. Additionally, potential sensory issues are addressed, with dim lights and quiet or no background music.

Families are able to eat in peace, in a nonjudgmental space. Parents may choose to interact with other parents and so may the children; but if they don’t, that’s OK too.

“I have been corresponding to [sic] hundreds of people across the country,” Leonard told The Morning Call. “The plan is to have Autism Eats clubs in every state that wants one and to offer dinners on a more regular basis.” According to the Tampa Bay Times, Autism Eats is currently in five states, with plans for 26 by the end of the year. Additionally, the group is applying for nonprofit status.

Upcoming meals include:

  • 9/24 – lunch at Filet of Soul Restaurant in Downington, PA
  • 9/27 – dinner at the Post Office Pub in North Grafton, MA
  • 9/27 – dinner at BJ’s Restaurant in Victorville, CA
  • 10/18 – dinner at Andolini’s Restaurant in Andover, MA

Please see the Autism Eats website for more information. If you’d like to start an Autism Eats program in your area, reach out to them via the website or their Facebook page.

Katie Read

What to Do When a Friend’s Child Is Diagnosed With Autism

/by

shutterstock_275570180When a friend or relative’s child is diagnosed with autism, it can be awkward and uncomfortable. Many people just don’t know how to respond.

I get it—I really do. But it’s best to do something. Here are some basic do’s and don’t’s that I recommend, both from my own experience and the experiences of other autism families.

Do:

  • Call your friend. Texting doesn’t count! (Younger parents—I know you disagree on this. Take it from a 40 year-old. A real live phone call goes a long way!) Ask her how she’s feeling. Let her know that she can vent or cry to you. We are all afraid of being downers to other people. Knowing someone can handle the hard stuff means everything.
  • Bring over a cup of coffee. Or a casserole. Or a bottle of wine. Or 14 Cadbury bars. I’ll always remember the friend who came by with Starbucks when she heard. The little things really do count the most at these hard times.
  • Keep inviting your friend to all things you would normally do together. Storytime on Tuesdays? Invite her. Playdate after school? Invite her. Your friend will decide if an outing is too much—but the worst thing is for her to feel isolated or rejected by the lack of invitation.
  • Treat her child the same way you always have. If this is your nephew and you have always had free reign to correct his behavior, keep it up! We want our kids to have as typical a life experience as possible, which means typical experiences with every day people. Unless or until your friend asks you to treat their child differently, just keep up business as usual.
  • If you can offer to babysit, do it. You cannot imagine the to-do list that was just dumped on your friend’s lap. Diagnosis means endless phone calls to insurance companies, state services, school districts, early intervention, speech, PT, OT, endless coordination of appointments, reams and reams of paperwork, and a whole reorganization of life as she knows it. And all of this has to be done while she is feeling grief, fear, and confusion—and still parenting and working and cooking and cleaning and all the daily stuff of life. Even if you can supervise the kiddos downstairs while your friend starts her list of phone calls upstairs, it will help. A lot.
  • Do know that your friend is genuinely mourning a loss. I know it’s taboo to say that early diagnosis is a time of mourning, but honestly, it is. Imagine going from typical parent dreams—that our kids will be athletes, valedictorians, successful spouses and parents—to simply wondering if they will ever live on their own, hold down a job, or even speak. There is grief there. Treat your friend as you would any person going through a tough time.

Don’t:

  • Don’t use a bunch of platitudes to try to make the person feel better. “It’ll be all right,” “it’s all good,” “everything happens for a reason,” “you’re the best person to handle all of this.” These things don’t make us feel better. They might make you feel better, but they make us shut down the actual expression of our feelings, our fears, and our intense new stress.
  • Don’t say, “I’m sorry.” Honestly, this doesn’t bother me personally. When people say, “I’m sorry,” I assume that they mean they are sorry because it must be stressful and scary and hard—which it is. However, I know that many, many autism parents hear this differently and find it very offensive. Don’t risk it.
  • Don’t avoid your friend, assuming they want space. If you give someone space without first asking if they want space, they basically feel rejected and isolated. Everyone wants the choice of space. No one wants space forced upon them. Invite your friend out as you normally would, and do not take it personally if she can’t participate for a while.
  • Don’t stop bringing your child around the child with autism. I had regular weekly playdates with two friends and their kids for the two years prior to diagnosis—and literally never saw them again afterwards. Both sent texts: so sorry, hang in there, and then had excuses every single time I texted for our typical playdates. I got the message pretty quickly—but it was still shocking, and still stung like crazy. Your child will not be stunted by hanging out with an autistic child. In fact, your child will definitely have autistic peers in school, so might as well start their education (and your own practice of inclusion) now.
  • Don’t humble-brag/compare/complain about your neurotypical kids. “I’m sure he’ll start talking. It’s just like how we never thought Billy would win gold at State, but then he did!” No. It’s not.
  • Don’t assume there is some huge, glowing autism community that has scooped up your friend and given her a fabulous social life. There isn’t. This disorder is wildly isolating for families. Plus, even when we meet other autism parents, the spectrum is so huge and our experiences so different that it’s still often hard to connect. The lucky ones will find a few great people along this road, but in the early days, we really need our long-time buddies.

Now call your friend and get to Starbucks and put on your listening ears. She will remember it forever. I promise.

A version of this was originally posted here.

Angela Conrad

Seeing the Joys Behind the Heartache of the Diagnosis

/by

conrad2There are many days where raising two boys on the spectrum is challenging. I have days where I hold back the tears every single minute of the day. I still have the days where I am just so angry that my children have so many challenges. I still have my bad days six years into our journey, and I probably always will. I am sure it is just part of being a special needs parent.

There are many days I just want to get inside the body of my son with severe autism and know for myself what he feels. I watch my son and how he has to move constantly. I watch him get frustrated with not being able to communicate to me.  I see his challenges daily. I watch my other child have difficulty making friends. I see them both struggle with their anxiety, and it is just gut-wrenching as a parent to watch.

Nonetheless, through the heartache of watching autism’s daily challenges and living these challenges with them, I see the beauty right before my eyes every day. I would do anything–as most parents would–to turn their challenges into strengths. We continue to work on their challenges daily, and my hope is that they’ll learn to overcome their challenges through their therapies. However, the beauty that this journey has taught me far exceeds our struggles.

When I get to hear my son with severe autism laugh and giggle, my heart explodes with joy. His giggle is so cute. I long to hear it daily, but don’t. I wish he could look me in my eye every day, but those moments are so few and far between. However, when they happen, there are just no words for the joy inside that moment.

There is nothing like the triumph I feel when I see the happiness in one son’s face when he makes a friend. His face just radiates with so much joy that it makes all the heartache before that moment go away.

In the beginning of our autism journey, I admit that there wasn’t much joy to be found. It was hard dealing with the new diagnosis and new life that was handed to us. My days and nights were mostly full of wild, out-of-control children who did nothing but have tantrums and meltdowns. Sleep simply didn’t happen in our house. Life was hard and is still hard. However, through the past few years, we have made some progress and the joyful moments behind all the hard ones are really starting to shine through.

It would be very simple to not see the beauty in each day. It is very easy to get locked up in challenges and to simply focus on them alone. However, as we grow in our journey with autism, we are seeing the small things in life and rejoicing with each tiny step that we make.

In any life comes challenges, but with those challenges come beauty. It is hard to see at first, but it is there.  I challenge you to see the joy in your day no matter how hard it is. I know it is hard, but once you do, it can be amazing.

 

Rachel L. MacAulay

Mom Petitions for Autism-Friendly Checkout Lane at Target; Shoprite Answers the Call

/by

sensory-checkout2Every parent knows how annoying the checkout aisles in supermarket and big box stores can be when the kids are shopping with them, no matter if the kids are on the spectrum or not. After all, by the time we get to the checkout, we’re likely frazzled and just hoping that we’ve managed to remember everything we need. When we finally roll our cart to the checkout line, we know we’ve almost made it and it’s just a few minutes until we’re out the door! But there they are—the dreaded gum and candies and toys—more little unnecessary doodads that we don’t want and don’t need.

They’re not just there for us, though—they’re placed there for the kids. Even though they want our kids to be quiet and well-behaved and good-mannered, stores seem to purposefully place this stuff in the line of fire, hoping to eke a few more dollars out of us. Instead, what often happens is that we stand firm, and our kids—who are already cranky from the shopping process—just melt down.

With this in mind, Philadelphia-area mom, Kristin Jackowski, started a petition on Change.org to “encourage Target and other big box-stores to implement autism-friendly checkout lanes.” Kristin has three children, and five-year-old NavyAnna has autism, along with sensory issues. While it may not be a store’s responsibility to “parent” our children, and many people view a child having a meltdown over a toy or piece of candy as a “spoiled brat,” Kristin says that NavyAnna has “poor impulse control,” and the checkout lane causes the most trouble.

People don’t understand, viewing NavyAnna’s meltdown as a simple temper tantrum because she’s not getting her way. “The stares, comments and eye rolls of disgust I could do without, because the situation is already hard enough,” says Kristin. In her petition, Kristin recommends that stores “flip the script and turn this into a positive,” by having sensory-friendly aisles with “sensory input tools parents can actually use” instead of candy. She recommends things like bubbles, Play-doh and stress balls—things that help a child de-stress and self-soothe. She also recommends that cashiers be given some sensitivity training so that they recognize that you “can’t always see a disability.”

Instead of candy, sensory-friendly aisles would have tools such as Play-doh & teething toys.

Click To Tweet

Kristin talked to her Target store’s managers and was told that this sort of change needs to come from the corporate office. Philly Mag contacted Target corporate on behalf of Kristin and was told that they were looking into the request.

However, the management of Kristin’s local Shoprite supermarket, which just opened up three weeks ago, heard about her petition and decided it was a fantastic idea. Paul Kourtis, the store’s director, said he didn’t understand at first, and wondered, “what’s the big deal?” So he did some investigating and determined that “one of the most helpful things he could do would be to replace the candy in the checkout with ‘sensory friendly’ items like Play-Doh, rattles, and small puzzles, one of the key changes requested in the petition.”

Paul then checked with the store’s owner, who immediately OK’ed the change. “I just merchandized the aisle correctly with sensory-friendly objects. No candy whatsoever. It was easy to do. We’re happy to do it,” Paul said. The store will also be working with all employees to educate them about autism and sensory issues.

In the meantime, one of their 18 aisles is now “sensory friendly,” and there’s a sign on it to make sure people know. How’s it working out? “People are going crazy for it,” and spreading the word.

Anonymous

The Fragments of My Heart

/by

I chose a long-sleeve top to wear, once again, to cover the bruises and the scratches. Too many questions, raised eyebrows, and stares to risk showing my bare arms again.

I was attacked, again, yesterday.
So was my daughter.

We were screamed at, clawed at, and scratched.
Last week, my daughter went to school with a black eye.
There was no hiding from it that time.

There are times during the day that I am scared: scared to say the wrong thing, scared to open the blinds or the front door, scared to leave the room.

Some of his triggers I know; some I don’t.

He is unpredictable, strong, loud, intimidating and aggressive if things don’t go his way. One minute he is sitting quietly, the next he erupts.

Neither of us wants to be the cause of the next outburst, so we walk about in silence sometimes, doing whatever it takes to keep him happy.

Then it happens.

Due to something we had no control of, or even knowledge of, we are the ones facing the brunt of the explosion. Things are thrown, chairs overturned, doors slammed.

Glasses are broken into tiny pieces in an instant, just like the fragments of my heart.

I watch my daughter tremble as I am dragged across the room and, on this occasion, even outside. He wouldn’t let me back in for hours.

I paced the street behind him, begging him to come inside, telling him it was OK and we would sort this out–desperately trying to calm him down for his sake, my sake, and my daughter’s sake.

Then it flipped back.

The cause of the issue resolved in an instant and–bang!–we were back to happy and playful in the house like the whole thing was just imagined.

Like it never even happened.

He can forget. We can’t.

He won’t talk about it. He can’t. When it’s over, it’s over, end of story.

But for us it isn’t.

I have had enough. The next morning, I set about calling for help. I searched the Internet for helplines, advice pages, charities, and support. I read sites through tears.

“Who is doing this to you?” they ask, their tone implying sympathy and compassion.

“We want to help you,” they say.

“You don’t need to live like this.”

“We will get you moved to safety.”

There is help! I hear myself cry. They can make referrals for the person causing this, they can rehouse me and my daughter in a place of safety, we can access counselling and support.

They all assume it is my husband.

If it was, there would be help and support available, both immediately and longer term.

Then I tell them something nobody wants to hear. There is silence at the end of the phone line, followed by a whispered, “Sorry, in that case there is nothing we can do.”

He is a seven-year-old boy. This is severe non-verbal autism.

The cause of the dragging me around the streets was a neighbour with a door open. He can’t cope. He is scared. He doesn’t understand. He needs help. His only way of coping is to have a meltdown.

What if it was my husband doing this? Well, there would be so much more help available; so many wonderful charities and groups ready to come to our rescue. But when I tell them it is a child–my son–and that he has autism…

Silence.

—-

I will be criticised for talking about this. I will be blamed for not being able to control my own child. I am breaking a major taboo in writing this.

It has to be talked about. Too many are struggling alone. We are one of the few, as we’re now getting some support. Don’t suffer alone. Let’s stop the silence about living with children with challenging behaviour and autism now.