The Unpredictability of Sensory Processing Disorder

I never knew about sensory issues before having Brody. I wouldn’t have believed that a child could get so upset at the sight, touch, smell or sound of something — if that something wasn’t typically upsetting.

Brody’s sensory issues were visible before we even knew what they were. When he was weaning as a baby, he would often gag at the sight of food to the point he would vomit and refuse to eat. When we went to play groups, he would retch when he saw other children eat grapes and bananas. When I gave him cooked coloured spaghetti to play with, he looked at me in sheer horror, repulsed. He threw up at soft play once after touching stringy sensory lights and on one occasion was sick touching wet washing that had come out of our washing machine.

It sounds so silly, but I used to put it all down to reflux. Because his doctor put pretty much everything down to reflux back then — his delays and his daily vomiting.

It was only as time moved on — when we realised that Brody had various disabilities and I had the opportunity to meet more doctors, therapists and mums walking similar paths—  that I discovered sensory issues was a thing. And that it was known to many as sensory processing disorder (SPD).

Apart from the fact that it upsets my beautiful boy, the thing that really frustrates me with SPD is its unpredictability. There is no consistency, so I can never call it.

SPD can make me out to be a total liar to those who don’t understand its ways, which, let’s face it, is most people. One day, Brody won’t eat something. He’ll recoil at the touch of it and push it away, starting to gag. A few days later, someone will offer him the exact same thing. It could be a banana, a chocolate biscuit — anything. I’ll explain the situation to them and then he’ll quite easily take it from their hand, have a bite and treat it like it’s the nicest thing he’s ever tasted.

SPD can make simple things at home a nightmare. Some days I can vacuum our living room whilst Brody sits on the sofa and he doesn’t even flinch. Other days he screams as soon as it’s turned on and throws the nearest object in protest — usually towards me. If someone in another room uses the handheld vacuum, you need to be really careful that he doesn’t hurt himself or someone nearby as soon as he hears it. Needless to say, we usually try to just vacuum when he isn’t in the house.

SPD can let its presence be known anywhere. Sometimes we can put petrol in the car and it is no big deal. We’re just like any other family filling the car up. Other days, just turning into the petrol station, knowing that that the noise of the tank being filled is coming, is enough to make Brody screech and cry — and believe me, he rarely cries.

SPD can make our favourite places hard to enjoy. Like our garden, which is the one place where we can just go outside that is safe and accessible for Brody. But sadly, his sensory issues mean that we never know how he’ll react when we step out the back door. It could be the sound of a lawnmower a few houses down, the wind or something like the touch of the sand in the sandpit. When he was a toddler he used to gag when his bare feet touched the grass. Thankfully, that one stopped, as it was as tricky as it sounds!

SPD can ruin family days out for Brody. We can be eating in a restaurant where he’ll suddenly gag because of the food we’re eating, so we need to leave. Or he can be enjoying soft play and someone turns on a coffee machine in the background and he is instantly distressed.

Don’t even get me started on hand dryers in public bathrooms.

SPD is hard on everybody, but especially Brody. I can’t even begin to imagine how hard it must be for him. Because he is non-verbal with a learning disability as well as autism, sometimes we just can’t guess what it is that is upsetting him. And that’s so tough for us all.

Over the years, some of the things he has struggled with because of SPD have improved somewhat. He never used to be able to tolerate sitting and eating with other children at all before he went to nursery. Now he sits with children every day and manages so much better. He will still gag occasionally, but it’s hard to know if it’s because of sensory issues or because it’s his way of saying “no.” Nursery has helped him so much.

One thing that is almost always consistent, though, is that a cough and cold brings it tenfold. Being unwell rarely doesn’t affect him when it comes to the sight and touch of even his favourite foods.

We’ve learnt to accept that we can’t predict sensory overloads. That some days everything will be fine, and other days things will be more difficult. But I don’t know if its unpredictability will ever not be frustrating for us — especially Brody. Because, naturally, we just want him to be happy and enjoy simple things. And SPD has the power to prevent that.

It’s uncontrollable.

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.

Telling People Your Child Has Autism

No one has a child hoping that they will have problems and difficulties in life – that would be absurd.

We want our kids to fit in with their peers, have friends, enjoy their childhoods and do well at school, but sometimes life doesn’t dish up exactly what we were expecting.

Seeing your kid on the edge of things struggling to join in is a painful experience, as any of us who have been in that position can testify.

When Edward was first diagnosed as having Asperger’s Syndrome it didn’t come as a surprise to me as I had suspected that he was on the spectrum on and off for quite a number of years. It was more of a shock for Nick, and I remember him asking the psychologist who gave us the diagnosis for a percentage score of how autistic Edward actually was. The conversation went into a strange loop, with the psychologist unable to give a precise figure and Nick struggling to get a handle on the situation without some tangible score.

When we got home, we contacted both sets of our parents and let them know. Then we had to work out who else to tell and in which order. Edward was 8 years old at the time and it seemed only appropriate that, seeing as he was old enough to understand, he should know about his diagnosis before anyone else. So we sat him down and told him.

I’ve written about how we did this and how Edward reacted here.

Nick and I both agreed that school staff needed to know. After that it became more tricky. We wanted to tell our friends but were aware that, if we did so, some of them would inevitably mention it to their own children. We wanted Edward to be settled with his diagnosis before he had other children asking him about it. Nick also needed a bit more time to get his head around it first.

In the end, once we’d had a bit more time to digest the information as a family, we did start to  tell our friends. Sure enough, one family must have talked about it in front of their own children, as Leila came home from school reporting that one of our friend’s kids had asked, “Has Edward got autism?” I was just very glad that we had sat our kids down and explained autism to them first. I wouldn’t have wanted any of my kids hearing about Edward’s autism as if it was something scary and frightening.

Edward didn’t want his primary school class to be told about his diagnosis, although this was something offered to him by support staff.

Towards the end of primary school, Edward was open to letting family friends know about his diagnosis. We found a very useful book called, “Can I tell you about Asperger Syndrome?” by Jude Welton. It’s a short read and can be read by children and time-pressed adults alike. It gives a quick overview of what it is like to have Asperger’s from a child’s perspective. Quite a few family friends read the book and I think it gave them more understanding and patience toward Edward.

Once Edward reached high school, I realised that a real shift had occurred in terms of how he viewed his autism diagnosis. He wrote this when he was 13 years old:

“I have a condition called Autism. It affects my behaviour, and makes me less social but more focused.

Most people see autism as problem but I see it as a feature of personality. If there was a cure I would not take it…. because I would die and be replaced by another person inhabiting my body. It would not be me, but a less interesting version of me without my best and worst features.”

If you are telling people about your child’s autism, I think it is worth pointing out what their strengths are as well as their weaknesses. I recommend letting people know what things will help them stay calm, what things they will enjoy and what they will be motivated by, rather than only focusing on the negatives. Taking this approach is a more positive way of explaining who your child is and what they need.

A few months ago, I read an article about a 19-year-old boy who had been diagnosed with autism as a young child. His parents had kept his diagnosis a secret from school, friends and even grandparents. They claimed that they had successfully managed to help their son pass as “normal.” I wonder how on Earth they did this – and I also worry about the mental toll this took on their son. I want Edward to know he has autism. I want other people to know and understand what this means and I don’t want him to have to hide.

Our kids will become adults sooner than we can imagine, and a world where autism is less stigmatised will be a better place for them to flourish.

Although I would never wish any of the difficulties that Edward has experienced through his autism on him, he simply wouldn’t be the interesting character that we know and love if he wasn’t autistic. The challenges he has faced have forced him to develop buckets moreof  self-awareness, reflection  and perseverance than I had at his age, and I can’t help but hope that this will stand him in good stead for the coming years.

A version of this post first appeared here.

The Forgotten Carer

I am a forgotten carer. I didn’t choose to be a carer and, if I am honest and I had a choice, it wasn’t on my list of dream jobs when I was younger. However, when you have a child or children with disabilities, you become a carer by default.

Parents like me have no choice in it; it is something that we become instinctively and quite rightly so, as they are our children. I brought them into this world and I will care for them to the best of my ability until the day I die.

When I speak of being a carer, I do not mean the normal things that each and every parent does day in and day out. I mean duties above and beyond those. I am a full-time advocate, fighting battles with teachers and the local authority over my child’s right to a suitable education. When necessary, I battle with GPs and the NHS for hospital appointments and assessments with the relevant clinicians, taking notes on everything. I track dates, make follow-up appointments, submit paperwork on time and keep a diary of important dates. I arrange blood tests and then spend months preparing a socially and mentally impaired child for what will happen. There are dates for everything — I’ve learned to juggle my calendar with military precision.

I am a forgotten carer. As a direct result of becoming a carer by default, I am, in effect, unemployable. I don’t want the benefits that having a disabled child can qualify us for, I want a career and I don’t want my child to be disabled. I am not lazy — I want to work. Sadly, I simply do not have the time to be reliable for any employer. Even being employed by my own company resulted in me having to train someone else to fulfill my role, as I couldn’t meet my obligations in the workplace.

I am a forgotten carer. There is no support, either mentally or physically, for carers of family members that have no voice of their own. Services argue over who should be providing the support that my child needs. Respite services are turned down for various reasons that seem totally unjustified, and when I ask for reevaluations, they move the goal posts even further. Families like mine reach their breaking point and risk simply falling apart.

I am a forgotten carer. Pushed aside and broken, exhausted and stripped to my very core. Friendships and relationships have diminished before my eyes because I’ve lost sense of whom I truly am.

We are forgotten about. And all too often, due to the enormous stress and physical strain that we are under daily, we have our own health issues to contend with. I’ve been diagnosed with several conditions that are triggered by extreme stress. Who will look after me if I end up disabled? Who will look after my children? Will they be taken into care because I can’t fulfil my duty as a parent, let alone a carer? I worry about everything — What if I end up depressed and unable to care for any one?

I am a forgotten carer. I am exhausted. Sometimes it’s even too much effort to take a simple bath or shower. Forgotten carers can feel underpaid. We fit in more than 24 hours’ worth of work into a day, and our shift never ends.

I don’t want to be a forgotten carer anymore. I definitely need some help.

Isn’t it about time that “The Forgotten Carers” aren’t forgotten anymore?

Until that time comes, of course I will continue to go above and beyond. I will continue to push my broken body through ridiculous obstacles and I will continue to care and love my children unconditionally.

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.

The Day My Child Accomplished Potty Training

Whew! I feel like I can finally breathe a sigh of relief. I am raising two boys on my own, and both happen to be on the autism spectrum. Therefore, breathing easy just doesn’t happen in our house, between all of the sensory overloads, meltdowns, tantrums, inability to express needs and so forth. However, now a very small part of me can relax because we accomplished potty training!

It took over 18 months, and it was no walk in the park. In fact, it came with meltdowns, screams, cries, kicks, hits, feces on the wall, and feces and urine on the carpet. I know—gross! But when you are trying to potty train a non-verbal child with severe autism, it isn’t pretty.

Every parent dreads the potty training stage. When you are an autism parent, you dread it even more. Every rule and suggestion that you were ever told from neurotypical parents goes completely out the door. It simply doesn’t apply to the strenuous task that you have on your hands.

There were times I never thought I would achieve what we did. Yes, I wanted to give up many times. In fact, I clearly remember crying myself to sleep many nights out of frustration and pure exhaustion over potty training. Some individuals with autism are never able to accomplish this milestone. Therefore, I am very thankful and grateful that we were able to accomplish this step in our journey.

All the tears and sweat was worth it. There was nothing like the feeling I had on the day that I realized, “He is getting it.” On that particular day, I walked into the bathroom to find Trenton on the toilet. Goosebumps instantly blanketed my body. I didn’t tell him to go. I didn’t force him and drag him to the bathroom. He went all by himself. My son was sitting on the toilet and doing what we had been working on for months! Instead of tears of frustration, I cried tears of joy.

It was very clear that I wasn’t the only one that was happy with this big moment—he was too. The grin he had on his face while he was clapping his hands with excitement was priceless. He knew exactly what he was doing and he was just as happy as I was. From that day forward, I saw the light at the end of the tunnel that I never thought I would see.

By no means could this have happened without my son’s fantastic team of therapists working so diligently with him while he received applied behavior therapy in their facility. His team of coaches at Harsha Autism Center deserves much credit for this accomplishment. If I was trying to do this without the help of his therapist, we wouldn’t be where we are today.

So, to the parents just starting this step on your journey, hang in there. You will go through the unthinkable. You might have a day or two where you simply think you smell like the potty because it is all you deal with. Your heart will sink at the sound of the timer going off because you know how much work it is going to be to get your child to transition to the bathroom. I know you will be exhausted. I know. I understand. I get it. Please stick with it and be consistent, because it is amazing when you all finally get there.

When You Still Get Flashbacks to Diagnosis Day

Some days stay in your memory for a long time: the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me, one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that, either.

I put it to the back of my head most days. I rarely read the report I was sent, as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old and waiting on his final assessment for a lifelong diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turned out I was wrong.

I was utterly devastated to hear that my son had autism.

People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things, and that my son is still the wonderful boy he was before that day.

I still cried.

I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son… I cried for me.

Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even in school yet.

When he was diagnosed, he was only just walking. He had no language and little awareness of the world around him. He didn’t even know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. Noone offered me hope.

It was a dark day.

I could take you to that building even now, despite four years and five months having passed since we were there. I still see the waiting room in my mind. I can smell the sterilised toys and the wiped-down plastic seats. I can hear the voice calling my son’s name. It was like time stood still that day.

As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a momentary flashback to diagnosis day again. Except this time I didn’t cry at the memory–it was more of a shadow in the background.

It has truthfully taken me many years to get to this point. Some days I hate even being referred to as “an autism mum,” as that just makes me think back to that defining day when they mentioned autism for the first time.

My son has autism. I can say that now.

Today, I say that with pride and a smile. My son is still non-verbal, still not potty trained and still requires around-the-clock care. He has no idea what happened the day he was diagnosed, and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.

Whether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.

I know I am not the only parent who has taken years to process my child’s diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life-long condition with no cure.

So, what most helped me stop those flashbacks and memories from taking over? Hearing my brown-eyed boy’s laugh, watching him smile and realising that he may have autism, but autism in no way defines him.

We are doing OK. We are a team. I help him and he helps me, too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.