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?

 

Piece by Piece

Piece by piece, I felt my aching heart shatter into a million pieces. Each piece slowly tore away until my heart, which was once whole and perfect, crumbled into a million pieces. Little did I know that it would be slowly put back together, but in a much different way than before.

“Your child has autism.” It rolled off the doctor’s tongue as if it was nothing. It came out of her mouth so effortlessly and without any compassion. I sat there, feeling my heart start to break, piece by piece. Little did I know then that it was just the beginning of my broken heart.

As time went on, each piece disentangled more and more. The therapy schedule filled up and the life I knew before was no more.

My phone calls for catching up with friends turned into phone calls to fight insurance companies. My relationships with friends and family changed. I no longer could be the friend I wanted to be. I couldn’t do shopping trips away from my child. I couldn’t have a girl’s night out. It simply couldn’t happen. I had a child who needed me 24/7 and no one was pounding on my door, begging to babysit.

The anticipation as a first-time mother to hear my firstborn say, “Mommy, I love you” never came.

Trips to the store with my child simply couldn’t happen.

Normal, day-to-day living was hard work and exhausting. Nothing was easy. Brushing teeth, putting on clothes, and potty training were a far cry from what typical families experience.

Shopping for age-appropriate toys doesn’t happen. A simple look in the eye from my son may happen once a month, if I am lucky.

A full night’s rest was no more. We don’t know if and when we will sleep. Slowly, as life changed to adapt to our new life with autism, my heart just kept breaking, piece by piece.

The stages of grief came and they still happen daily. The rollercoaster life of autism was our new normal and it was the hardest thing that I have ever done in my life.

I soon found myself wondering the dreaded question: “What will happen to my child when I am gone?” I worry and ask myself this every single day.

Again, each day the pieces fell from my heart. It’s a hard life, but even though my heart broke piece by piece, I finally found the way to put it back together.

Slowly, over time, acceptance entered my life and I started to put the pieces back together.

As hard as it is some days, I started focusing on the positives. I started to see the joy in the unexpected. I soon saw the beauty. On some days, it is hard to find the beauty in severe autism, but there is always something even if it is a small thing. I long for the life I had before every day–that never goes away. However, I do enjoy the beauty of my new life.

Even though I have worked through and put the pieces of my heart back together, it will never be like it was before. I smile and laugh behind the scars that my heart has. The scars hurt and they are wounds from the life I envisioned for my child; a life without any trials. However, piece by piece, I put my heart back together and learned how to work though the scars. That is simply what we have to do.

Autism parents don’t have a choice. Our hearts breaks into a million pieces when our child is diagnosed and slowly, over time, the pieces are put back together, but in a different way than before. None of our closest family and friends could ever begin to fathom what we went through with each piece that was torn off. The only ones that know that feeling are other autism parents.

As time goes on, I hope you can enjoy how your new heart is put together, piece by piece.

The Wheelchair Icon Discussion

Is it time to update the International Symbol of Access to represent all the special needs that need accommodations?

Over the last decade, the global community has made great progress in the recognition of special needs. Whether it’s Autism, Down Syndrome or ALS, few can argue that people are less aware of special needs than they were a decade ago.

And sometimes as a society we need to revisit how we represent these needs in our words and symbols to reflect culture today. Brands do it all the time. Coca-Cola has changed its logo eight times since 1886; Pepsi eleven times. Even new companies like Instagram changed their logo in the first decade.

The icon on the Disabled parking permit logo is the International Symbol of Access (ISA), also known as the (International) Wheelchair Symbol. It was designed by Danish design student, Susanne Koefoed, in 1968.

The current icon is probably one of the most recognized symbols in the world (and ISO 7011 standard). It is also one of the greatest examples of an icon that needs changing today.

Who is actually eligible for a Disabled/Handicap Parking Permit?

Let’s first say you don’t need to use a wheelchair to get a permit.

This is a critical point.

With a symbol that looks like a wheelchair as part of the icon, it implies that you have a physical walking disability.

This post is not intended to undermine the importance of ensuring accessibility for those with a walking disability or who are in wheelchairs. It’s just pointing out that the current icon insinuates a physical walking disability is the only one covered, and that’s simply not true.

Is it a wheelchair in the icon?

It’s important to note that the wheel cutout is simply that. A wheel. Not a wheelchair.

I understand that completely. But it is still hard not to think of a wheelchair when looking at this icon and, again, you don’t need a physical walking disability to be approved for a pass in many states.

My son has autism. He walks fine. That doesn’t mean he wouldn’t fall into the permissible categories for application and be approved. It would mean, however, that now we would have a permit with what looks like a wheelchair on it. I would imagine even my son would ask, “Daddy, why are we parking in the wheelchair spot?”

On one hand, it shows the incredible success of this icon—a level of success many brands would kill for. On the other hand, it shows why we need to change or modify it.

If you are a parent of a child with special needs, you can apply for a special parking permit in many states, even if your child can walk.

In New York, for example, on Form MV6641, the New York State Department of Motor Vehicles Application for a Parking Permit or License Plates for Persons with Severe Disabilities, an applicant doesn’t have to indicate they use a wheelchair. They can apply under these conditions:

  • Has a physical or mental impairment or condition not listed above which constitutes an equal degree of disability, and which imposes unusual hardship in the use of public transportation and prevents the person from getting around without great difficulty?

Where does it say the applicant needs a wheelchair?

Let’s think about this for a moment. Your child can walk, yet the government decides to label them with a permit that visually looks like it has a wheelchair on it. Again, I get that it’s not supposed to be a wheelchair, but a wheel.

Social Stigma

With that said, I understand we live in a society where social media has magnified the power of almost any issue. Whether it’s race, age, sex, religion, or something else, not everyone will be on board, and not everything can be changed.

One solution could be to create another symbol altogether to identify non-walking disabilities for people who need similar accommodations in life.

The current International Symbol of Access is powerful and successful. However, it is a visual sign that reinforces a social stigma. And persons and/or families of special needs should never have to defend the reason they get to park in a space. Neither should they be judged by strangers who don’t understand the laws of who gets to receive a special needs parking permit.

I am going to keep using the phrase “special needs” here since I refuse to call them handicap or disabled parking permits.

The current icon justifies a social stigma and that is my biggest issue with it. In fact, before becoming a special needs parent, I actually thought you needed a wheelchair to get one… because it has (the look of) a wheelchair as part of the icon.

Some Change Has Been Made

In 2013, Sara Hendren and Brian Glenney co-founded the Accessible Icon project, designing a new icon that displays an active, engaged image with focus on the person with the disability. The new proposed symbol was met with some debate (as almost everything always is), but ultimately is now used in the states of New York and Connecticut, and elsewhere around the world. It also has a spot in the permanent collection of MOMA, The Museum of Modern Art.

Change doesn’t happen unless people know what they are trying to change. From the Water Bucket Challenge for ALS to Movember for Men’s Health, there is no doubt the level of awareness for special needs and causes is growing. This seems like the perfect time to look at our icons again.

Moms Who Inspire

My Great Autism Parent Expectations

Recently, buying my child a pair of jeans almost caused me to have an anxiety attack.  For years, my son refused to wear them (read: meltdown). Instead, he wore activewear. Things with stretchy waistbands and breathable fabric. To the point that I thought that he wouldn’t wear anything else for the rest of his life.

Special needs kids all have a line they draw in the sand for things they are willing to try and things that they will flat out refuse no matter what. Whether it’s only eating yellow foods, or putting their clothes on backwards, or not getting dressed until their clothes are lined up neatly on their bed. When he was younger, I remember setting up my son’s clothes on his bed, just so, and some days I even let him go to school with his shirts and pants on backwards. Because moms have a line in the sand, too. I chose my battles carefully.

But things change. I don’t have to set out his clothes anymore and, for the most part, he puts them on right. Every once in a while I still have to ask him to turn his shirt around before leaving for school, but it’s no longer a line in the sand.

An in-home aide once told me not to try and create a world where he didn’t have meltdowns, but to raise my expectations of him … help him be prepared for an adult world that doesn’t allow for accommodations. It’s hard to do that, though, when the meltdowns last all day and night.

You try to figure out what things they CAN do for themselves and what things the autism and other associated diagnoses make nearly impossible to accomplish. Finding a way to help them cope and function outside the safe four walls of home is terrifying. And then, one day, you find yourself raising the bar because they’ve mastered that milestone. Or they raise the bar for you.

A few days ago, I found myself sitting in a changing room with my son while he tried on half a dozen pairs in search of the perfect pair.  I watched my growing boy making a big first step. I know … it’s just jeans. But it’s never just anything, when you have a special needs child. The losses always outweigh the wins. So when even small milestones are achieved, it’s reason to celebrate. Because each new step is a hard-won step.