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.

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.

Parents Make a Mini Blockbuster Store for Their Autistic Son

Blockbuster declared bankruptcy back in 2010 and even though DISH Network bought the last stores in 2011, most of us just assumed that all Blockbuster stores were long gone. But it turns out that there are still a few in Alaska and Texas.

Unfortunately, the one in Sharyland, Texas, also just closed its doors, and its closure has gotten Twitter user Jaavii’s 20-year-old brother, Hector, upset. Jaavii posted on the social media site that his brother, who has autism, “was sad that Blockbuster was closing down.”

But Hector didn’t have to be sad for long, as his parents built him his own “mini Blockbuster,” stocked with his favorite movies and cartoons. They even got a DVD rack topped with Blockbuster signs that they’d bought from the store when it closed.

While Hector is non-verbal, Jaavii’s photos show that his brother was happy and clapping with joy. Our hats off to these enterprising—and ausome—parents.

When the Weight of the Unknown Is Crushing You

There was a time before our son’s autism diagnosis when I felt completely lost. Everything we had brought up to the pediatrician had been disregarded. He was significantly behind in speech at 15 months old. He wouldn’t pick up food or even hold his own bottle or sippy cup at one year old, and his meltdowns from sensory issues and transitions were occurring hourly. He just seemed miserable all of the time. We thought maybe severe allergies were bothering him, but everything came back negative. We took him to the dentist because he was constantly chewing on everything, but that all looked normal. I finally sat down one night and took the MCHAT (the autism screening tool) online and realized that even though he made eye contact, he had pretty much every other red flag.

So, at three years old, he was evaluated by the school district and then by a medical team. Both teams came back with a severely autistic diagnosis. And I felt relief to finally know. And I felt bad that I felt relief. But I was glad to finally have an answer and hopefully a way forward to help him.

However, after they finally answered that unknown, it only opened up the door to many more unknowns. The more I read on the subject, the foggier I was on everything from treatment to which resources to trust.

I remember being told at his kindergarten IEP meeting that in a couple years we would have to make the choice between a diploma track or a certificate of completion track. How am I supposed to make that decision in third grade? How do I know if he will have the attention span to take the required yearly state tests? Will they accommodate him? With his behaviors currently so sporadic from one week to the next is mainstreaming him at any point a total pipe dream? Will he be one of those autistic children who responds so well to interventions that we should have chosen the normal diploma track?

At that same meeting, we were handed a pamphlet about getting on a waitlist now (in kindergarten) if we think he would need Medicaid services or housing after he gets out of school. Oh, that one stung. When we are looking at our savings and our options, we do not know if we should be setting aside a college fund or funds to put him in a home. We do not know if we should put anything in his name, as it could disqualify him from getting disability when he ages out of the education system. Will he need disability? I suspect so, but I hope not. What will happen to him when I’m gone? Will his siblings take care of him? Is it right to even ask that of them? I just don’t know, and it weighs heavily on my heart and mind.

When we look at the therapies and the educational setting that is helping him so much right now, we don’t know how long it will last. Will they pull services out from under him if he progresses too much or too little? Will the government cut funding to services that help him and others like him? Will our insurance continue to cover the therapies he is getting, or will accessing those services get harder and harder? Will his new school district be able to offer him an appropriate education next year? I’m not sure of any of that, and I think most of us autism parents are holding our breath expecting the other shoe to drop.

He is currently on a medication regimen that is working for him. Do the benefits outweigh the long-term side effects? I hope so, but I don’t really know. Will this medication work for him for awhile or, as his body changes and he grows, will we be back to square one? It’s another unknown and another issue we know we could be facing just around the corner.

I feel like all of the unknowns run on a constant cycle in my head. The anxiety over the unknown can sometimes feel like an unbearable weight that I have no choice but to bear. The best thing I can do as his mom is to focus on the now and hope the answers to unknowns reveal themselves in time. Until then, I’ll hope for the best, prepare for the worst and love him with all I’ve got.

How I Transition My Son Back to School After Holidays

As a mum of seven, I have many years of experience with the back-to-school thing. New shoes, earlier bedtime and alarm call, packed lunches and hunting down the PE kit. But that was before we had a child diagnosed with ASD.

Towards the end of term, my boy was getting more and more distressed with every day of school. I was having to become more and more imaginative with ways to coax him off the floor, to eat and get ready for school, to get out of the door, along the road, into the playground and finally into the classroom.

It was exhausting and upsetting even without the scornful/pitying/bewildered looks from other parents.

I am lucky in that I get a good level of support from my son’s school, but even so I breathed a sigh of relief when the Easter holidays finally arrived and I could take a day off from that particular nightmare.

I wondered if the lack of school routine would prove difficult, but once I had decided that on the whole, dressing in day clothes could be optional, he soon settled into his own routine. It made it much easier for him to tolerate any plans we had as a family.

The end of the holidays were looming – they are always over far too soon. I realised to make transition easier for him, I was going to have to start preparing him to go back to school.

We started in the same way we prepare our neurotypical children: Being more aware of the bedtime routine, bringing meals back to more “school hours” friendly times. Sorting out uniform, shoes and PE kits. (I swear someone steals them and hides them during the holidays!)

I decided it might be good to talk about what was going to happen with my boy – he likes to know what the plan is.

Firstly though, I talked about what we had done through the holidays. We chatted about what he had enjoyed most and why. He was relaxed and happy remembering all the fun he had had. Then I suggested he could tell his classmates and teacher about his favourite thing – we talked about how he could bring it up and what he might say. We discussed taking a shell he found at the beach in to show people.

He will spend all of his time alone if left to his own devices, so I thought this was a good way of giving him tools for the cloakroom/playground socialisation he often struggles with.

I allowed him to choose his favourite underwear for the following day at school, and put his favourite comfort foods in his lunchbox – OK, so it was a bit beige, but I knew he would eat it and be happy to see his faves in there rather than be challenged by unfamiliar or less-tolerated foods.

I talked to him about what he might do during the school day. I then chatted about what he might like to do after the school day had ended, which he enjoyed.

When it came to crunch time, he still fell to the floor and went into his panic mode so, yes, I confess, I bribed motivated him. I showed him three tiny chocolate mini-eggs and promised if he walked nicely to school with me, he could eat them in the playground. I promised my neurotypical daughter she could have some when she got home – luckily, she’s very understanding of her brother’s different needs.

This did the trick and he went into the classroom with no further stress.

The next day, he was more settled. Although he was initially reluctant to leave the house, he responded to our more usual chocolate-free motivational efforts – timing, playing verbal and spotting games, and planning future events that he loves to do.

I am lucky – my boy is verbal and bright, but still the school run can descend rapidly into an emotional car crash without planning and careful management. I’m always looking for new ways to make life easier, for him and for the rest of us at that busy time of day.

To the Mother at the Swimming Pool With Her Autistic Daughter

I didn’t notice you when I first arrived at the local aquatic centre. Amongst the usual commotion of scuttling children and bustling parents, I was too distracted by my two excited little boys, each racing off in different directions.

Although I’m at the pool every Wednesday afternoon, taking my sons to their swimming lessons, today was the first time I’d seen you there. You and your remarkable daughter.

I was sitting alongside the pool, attentively watching my eldest boy at one end practising his freestyle stroke, and my youngest at the other end blowing bubbles under the water. You probably didn’t notice me, lined up with all the other mothers.

But I noticed you.

You were nearby, in the warm-water therapy pool with her. With your intriguing daughter, who was looking only at you, but not really seeing you. With your beautiful daughter, who was severely autistic, and in another world. But that’s not what made you stand out to me.

The brightly dressed lifeguards were busy patrolling the lap pools, and the lesson pools, and the free-play pools, and the wading pools. Kids of all ages and sizes. Parents of all ages and sizes. The lifeguards didn’t bother you. They didn’t attend the therapy pool. Amidst the chaos, you and your daughter had all the time, all the space, and all the calm you came for. But that’s not what made you stand out to me.

Your daughter’s intense face was framed by a short and flattering hairstyle. I wondered how bearable it had been for her to sit still in the hairdresser’s chair. I wondered how well she had tolerated the hairdresser’s touch. And I wondered if she recognised the effort you put into her appearance. But that’s not what made you stand out to me.

You held her and moved her, letting the water soothe her senses. Your intimate connection, born from years of close care, was obvious even without your touch. But you looked tired. And you looked worn. Even as a mother myself, I knew I could never comprehend your tiredness. Nor your life. But that’s not what made you stand out to me.

What made you stand out to me, and what I admired more than anything else, was your strength.

Because not only were you a mother at the pool with your autistic daughter, but your daughter was in her forties, and you in your seventies.

Your life as a parent has been so different from most. Your journey as a mother unrecognisable to most. How many tears have you cried for the sake of your daughter? And how many dreams have you put aside?

Although it may not be the motherhood that you would have chosen, it’s a motherhood that you have courageously embraced.

Time drew in and you gently helped your daughter out of the pool, just as I did with my boys after their lessons. Your daughter became distressed when being led towards the rinsing showers, and it took you a long time to coax her under the spray, while my boys dashed in and out of their own showers in childish delight. And you eventually urged your daughter quietly into the changing rooms, as we noisily made our way into ours.

In the car park, I passed you once more, tenderly leading your daughter towards the car. While I silently applauded your patience and grace, my boys whooped their way over to the nearby playground. By the time I dragged them away from the swings, you had finally settled your daughter into the backseat.

And then, as you buckled your adult daughter into her seat and I buckled my young sons into theirs, it was obvious that we were mothers side by side, but worlds apart.

We drove our separate ways, but you still filled my mind. What does home hold for you? What does tomorrow hold for you?

Your daughter may never be able to appreciate how much you do for her. And how much you care. She may never know how truly lucky she is to have a mother like you.

But I want you to know that I do.

————

This post originally appeared here.

Waiting Is the Worst

I try and be patient, really I do. However, I find myself waiting by the phone, or the letterbox, or refreshing my email account every time there are results due, or a decision to be made.

Waiting is the worst.

For the 7.5 short years that my gorgeous daughter has been in this world, I have been waiting, and do you know what? I don’t even know what for.

We have lots of answers, lots of diagnoses that we just seem to be gaining at every appointment. Like a collector managing to find all but that one most rare figure that they need to finish the collection, we are waiting for that one diagnosis that will finally bring all of those little ones together, pulling them all in and tying them all up neatly. That last figure on the shelf making the collection complete.

Except it won’t help, will it? Once that collection is finished, there will more than likely be another collection to collect. Another diagnosis that doesn’t make sense, more appointments, more letters, and more waiting.

Waiting is the worst.

I thought that my daughter’s diagnosis of autism was the last piece for us – the final piece in the collection. We had to fight, we had to plead, and we had to push. She masks her symptoms of autism, you see; she conforms to a society that doesn’t quite understand her. She holds it all in and she releases when she’s home. Her safe place – her haven.

It turns out that her Autism diagnosis was just the end of the beginning. We still needed to collect the extras, and are still hunting for the rare. Researching symptoms that point us to the middle of nowhere, several directions to take and lots of dead ends, waiting on further directions, extra referrals.

Waiting. Waiting is the worst.

As I sit here – waiting for my rare collector’s item, I can’t help but wonder how many more of us are in this situation? How many more parents are out there that thought an Autism diagnosis would be the end, only to find out it was just the beginning?

Waiting, watching, researching, wondering, consumed by thoughts that lead nowhere certain. Just a list in your head of points to remember to mention at that next appointment. Another collection, more waiting.

Waiting is the worst.

Four Things My Severely Autistic Son Has Taught Me

Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge, but that I would also learn and gain so much.

Then one day my baby was diagnosed with severe autism. Everything I had ever known about parenting suddenly changed.

I went from being the teacher to becoming the student; despite my son having no ability to speak, he has taught me more than any speaker, any book or any course ever could.

Here are four things my severely autistic son has taught me about life:

1. If you enjoy something, repeat it

All too often in life we are told to “move on” or “grow up” or “you are too young for that!” My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on YouTube over and over. He presses the same button on the same toy repeatedly and still laughs.

Isaac has taught me that if something fills your heart with joy, never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life repeated over and over again.

2. Stop worrying about other people

Isaac has no awareness of others. He is not afraid to get on a slide, even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap, even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or whether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd.

He is blissfully content being who he is exactly and how he wants to be.

I want to be more like that. Life is not about doing what everyone else is or pleasing others. He is different and happy to be so, and there is a lesson there for all of us.

3. There are other ways to communicate without using words

I talk far too much. Many of us do. Isaac cannot talk at all ,so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, screams if he is unhappy or scared, takes my hand to lead me, and finds photographs of things he wants.

To most people, his communication is too basic, too rudimentary to learn anything from. They are wrong. Speech is not a “higher” level of communication, but rather a way to communicate that is actually too easily misunderstood. We can say we are happy, yet our body language says otherwise. We can say we love when we actually don’t.

My son simply shows me in beautiful and simple ways. They say actions speak louder than words — perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more.

4. Don’t worry about the future, just enjoy today

Isaac has no concept of “future.” He lives in the here and now and, at 8, is just about coping with the basic idea of “first and then.” He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism. He lives in the moment. He eats food and enjoys every item with no consideration for cost or sell-by dates. He is as content to eat an out-of-shape vegetable from a low-cost supermarket as he is to eat out in an expensive restaurant. As long as he gets to eat, he does not care.

He never stresses about money or where it will come from, and neither does he desire anything of any real value. He will play with a coat hanger, flapping it for hours, without any idea that most people would view it as trash. While we may not be quite as able to “live for the moment” as he is, we certainly could learn from his carefree lifestyle and worry much more about today than the future.

“First today, then tomorrow” could be a motto for us all.

Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same YouTube clip that he laughed at yesterday, and the day before, and the day before that too.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him. He brings me delight every day. He has so much to teach us. He may be severely autistic and non-verbal, but the world is a better place for having him in it.

People tell me he needs to be more like us. I disagree. We need to be much more like him.