The Love of a Dad

Omar’s son, Spenny, may be blind and autistic, but he doesn’t let that stop them from having some fun in his sports car. Who do you think is having a better time?

Autism-Friendly Glamping? Yes, It’s True

Glamping—short for glamorous camping—has become the “in” thing to do in the last few years. This slightly-more-upscale take on camping is perfect for people who like to be closer to nature when they travel, but don’t relish the idea of roughing it in sleeping bags thrown on the ground. If you’ve ever considered glamping, but were prevented because you couldn’t find autism-friendly facilities, start packing your binoculars and sunscreen because we just discovered Leafy Fields Glamping.

Leafy Fields has just earned an “autism friendly” award from the UK’s National Autistic Society. Its owners, Dannie and Andrew, told us they built the site “to be a supportive and non-judgmental environment for families like ours,” as they have “three members of our family on the spectrum.” Further, they know “how hard it can be for families like ours to relax on a holiday.”

Located in Devon, U.K., Leafy Fields opened in June and features two kinds of lodging—bell tents and safari lodges—depending on your desired level of comfort. The bell tents sleep up to four and come with bedding and basic amenities such as a stove and cold-water sink. Each tent has its own family shower room in a converted stable block, where the shower heads have color-changing lights. There is also a family-friendly toilet facility where older children “with toileting needs” can have privacy. There are two grades of bell tent—deluxe and luxury.

The safari lodges sleep up to eight, and have a kitchen and individual shower room. They also have cubby play areas that can be used as “a chill out area.” While the tents are only available until mid-September, the lodges are open most (but not all) of the year.

Leafy Fields also has a basic sensory room, and the owners are currently working on upgrading the design of a sensory garden. There are miniature horses to meet on-site, and the entire grounds are surrounded by a fence with locked gate. Dannie and Andrew are very hands-on and approachable, and want to make sure all visitors get the most out of their stay. Feel free to ask them for their list of autism-friendly local attractions and activities, too.

Lidl Trials Autism-Friendly ‘Quiet Evenings’

A few Lidl supermarkets have joined the burgeoning movement of stores (and some game places, such as Chuck E. Cheese) adding an “autism-friendly” shopping time to their weekly or monthly schedules.

This newest addition to the growing list of these initiatives by shopping chains such as Tesco, Toys ‘R’ Us and Target, is worth noting because of the time its shopping hour will take place (as well as its duration). While many autistic adults and parents of autistic children have complained because the “typical” hour set aside for their exclusive shopping is in the early morning, Lidl shops in Ireland have announced that their autism-friendly shopping time—billed as autism-friendly “quiet evenings”—will occur from 6:00 to 8:00 p.m.

“My son is not keen on going to the shops as it is,” explains Louise Ireland, a mother of three whose eldest is on the autism spectrum. “As an autism mum, I would love to see evening times (or times not so early in the morning), as they’re just more suitable to our chaotic schedule.”

Lidl will be trialing these shopping evenings in their Pottery Road (Dublin), Carrickmacross (Monaghan), and Patrick Street (Westmeath) locations on Tuesdays through the month of August. As is typical, lighting will be dimmed, music will be turned off, no store announcements will be made, and extra staff will be available for assistance. Additionally, shoppers with an Irish Autism Action ID can skip to the front of the checkout line (those without it will also receive help if needed). Lidl has also created this map to help kids get familiar—and comfortable—with the store.

If the chain gets good feedback from customers, it may roll the program out to the rest of its Ireland stores and make it a permanent occurrence. It will be interesting to see whether their chosen evening hours may be at a time truly more friendly to those who need it.

Three Things I Am Tired of Explaining About Autism

Not again, I thought to myself. 

Did they just really ask me this? Here I go again, I said to myself with a plastered smile on my face, trying to hide how cranky their comments made me. I know exactly why they ask such questions or say the kind of comments that they do. It’s simply because they can’t understand my child’s behavior and why we do the things that we do.

Being an advocate can be very monotonous. At times, I feel like I explain the same things repeatedly. And even after I go into great detail, I get the same baffled looks. It leaves me exhausted, irritated, stressed and angry. It’s exhausting having to repeatedly explain your child to people. I often leave a situation all calm and collected, and then release my built-up frustrations later. After all, a person can only explain something so many times without getting a little grumpy.

Are you wondering what I get asked about my son’s behaviors? My list is somewhat lengthy, but here are the top three things that I am tired of explaining.

1. Every child with autism is different.

There is not one family who has the same journey. So, please stop making comparisons among children with autism. I often find myself in a conversation and the person will say something like, “Well, I knew a woman who had a nephew with autism and he just started talking when he was four. So, your son will too.” Or something like, “A kid who has autism and lives across the street from me was put on a special diet by his parents and now he is just fine. I bet if you try that, Trenton will be too.”

UGH! Nothing can be more frustrating than trying to explain to people that what works for one child/adult with autism will not necessarily work for everyone. When I explain that I tried what they just mentioned and it didn’t help my son, I get the most confused/blank look back.

“How can that be?”

“It’s just autism,” I say, and I leave it at that.

Inside, I am screaming and angry and feel judged. I often feel like they don’t believe me when I say that I have tried and done almost everything, but my son isn’t like the person they know. It’s autism, folks! No one is the same and not one story is the same!

2. Yes, he does look ‘normal.’ Looks aren’t everything.

I know, I know! I hear this one a lot. My child is handsome and adorable, and has the cutest smile in the world. Therefore, he looks “normal” to strangers—it appears that there is absolutely nothing different about him. However, don’t let his looks dictate to you whether he has challenges.

He has many mountains to climb daily, and always will. My life has been forever changed because of his challenges. He may look like the boy next door, but we definitely walk to the beat of our own drum in this house, and we always will.

3. He’s got sensory issues.

Trying to explain the sensory problems that accompany my son’s autism is one of the hardest things to do. “Oh, your son can’t brush his teeth? But, why?” People look at me, expressionless, trying to grasp how a child who looks “normal” can’t brush his teeth because of sensory problems. I always go further, too, explaining that nail trimming and haircuts are impossible unless my son is asleep or held down. The look on their faces when they hear that is priceless!

It is hard to manage not only these types of conversations about autism, but many others as well. I do my best to get through them pleasantly while I am dying a little on the inside. Just when I think that I won’t have to engage in another tedious conversation explaining my son to someone, I find myself right back in the same exact conversation, but with a different person. It’s exhausting.

The Reasons I Don’t Like to Eat

We asked Naomi, the autistic daughter of blogger Miriam Gwynne, to try to write something for our community that would explain why she doesn’t always like to eat, and what causes her to not like certain foods. These are her words:

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Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like “Are you hungry, Naomi?”, “Would you like a drink, Naomi?”, “Are you sure you don’t want a snack?”

Why do people eat and drink so much, anyway? I have things I prefer doing, like watching YouTube and playing my own games with my toys. How am I meant to eat or drink when I am doing something else?

Sometimes people even want me to change rooms to eat. School does that. Why? I am comfortable and happy and then they make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What if someone touches something?

Those things scare me.

You want me to move to some place, sit down, and eat what you have made. But I didn’t ask for it. I did not know it was happening. No one told me I would smell different things, hear different voices and touch different stuff, and now you even want me to taste things?

It is too much, so I just freeze.

I can hear you, but everything is fuzzy.

I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour, like a light brown sort of colour. If my skin is OK then things that colour are OK, too.

But do you want to know why I still sometimes don’t eat things that are my skin colour? Well, it is just wrong. And my brain is all upset about food. When I play with my toys, they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice; it is the right colour and it feels nice and soft in my mouth.

But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness, and I get upset. You ruined it. Why do people do that?

I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order, it makes sense. I want to know it is “right” and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing, then another. My brain tells me “this is nugget skins” and I remember what they taste like. You damage it if it has sauce or potatoes on it. Then it is not nugget skins, but some weird thing my brain does not know. So, all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes, I get a little tiny bit to swallow, and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes like teeth, not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavor, do they?

I feel sick sometimes. Mummy says it is hunger, but I don’t get it. My tummy makes me feel sick and people say it needs food, but it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad: Please leave me alone. I like it best when mummy puts things I like near me when I am playing, so my toys can look at it and tell me it is OK. I know my world is OK then.

All day long people eat, eat, eat. And I get scared, scared, and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas the Tank Engine is brilliant. He never eats, and I like that.

The Fear: What Will the Future Bring?

Do you feel it sometimes, the fear?

It can creep up at any time, envelop you in its proverbial black cape, and stay there, making you think and worry, fearful for the future.

I’ve been thinking of this since our daughter turned 13 in May. She received her autism diagnosis at 4.5 years, so she’s been defined by this “label” longer than she hasn’t. Scary, eh?

The last few years have gone by in a flash, and she’s heading into year nine in September. Nine will turn into 10, 10 into 11, and then what?

She’s very lucky to be in the right setting for her. It became very apparent that mainstream wasn’t appropriate for D, and once we’d appealed against a statement rejection and had a successful appeal, we were able to get her into SN school within a term.

It felt a tough decision at the time: Do we “stick” with mainstream, recognising that D was finding it all way too challenging and hope for some sort of qualification at the end of a (angst-ridden) time in mainstream? Or do we go with our hearts and choose an SN school, with its smaller class sizes and its focus on “life skills”? It was an easy decision to make after deliberation—we wanted our daughter to be as happy as she could be, and anything else would be a bonus.

And she is—more than is. We listen with absolute joy as she reads, clap as we watch her class performances, and marvel at the fact that she’s there, on stage, when in mainstream she was too nervous to enter a school hall; too full of anxiety to participate in any activity.

But, we know that in a few short years it will all change; she’ll be too old for school. And then, what’s next?

A college placement in a huge sensory-filled building?

What if it all becomes too much? What if she’s singled out? What if someone suggests something and she says “yes,” as she doesn’t have the confidence to say “no”?

What if the bus to college is late and she starts to walk, with zero road sense? Or gets into a car?

What if there’s a job placement and other people don’t understand and accept her?

What if she’s bullied and is told not to say anything? What if it’s a person she perceives as authority? She wouldn’t say a thing, but just twist herself in knots, tighter and tighter.

What if she doesn’t get a job or college placement? What then?

And my biggest fear of all: How will she cope when we’re no longer around? 

At best, she and T tolerate each other. Would they be able to get on (ish)?

I don’t like to think like that, but nobody is immortal. I’d love to be; to always be there for her.

That’s the fear that keeps me awake sometimes.

 

Five Things Only an Autism Parent Would Understand

There is a famous quote by C.S. Lewis that says, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.’”

As a parent to two children with autism, I often think I am alone, struggling with things that I think nobody else would understand. And then I meet another autism parent, and another, and it seems we have so much in common.

Here are five things I have found that every autism parent understands whether your child can speak or not, whether they have learning difficulties or not, whether they are now adults or still in nappies. If you know these five things, know this too: You are not alone!

1. The Look

You know the ones where every eye is on you and your child because they are acting differently? Whether they are flapping, spinning, screaming, humming, rolling on the floor, or running away, autism parents know that look well. The look of judgment, curiosity, condemnation and contempt. Sometimes, it is a solitary look; other times it is all-consuming and you can feel their eyes staring right through you.

We are raising unique, smart, wonderful children that are too often misunderstood. Hold your head high, autism parents, and keep walking. It’s stressful, but it gets easier!

2. The Exhaustion

Even if you are blessed with a child who sleeps (which isn’t that common with autism), we all know the exhaustion. The appointments, the therapies and the constant need to interpret the world on your child’s behalf takes it out of you. Exhaustion causes so many of us to struggle with health problems—both physical and mental—and forget the most basic of things. Sleep deprivation and stress can make the most intelligent autism parent forget how to spell the simplest of words on a vital form. Be kind to yourself. You are raising an energetic and spirited child who will change the world; but right now they’re zapping your energy. We have all been there!

3. The Fight

I have yet to meet a parent who has had their child diagnosed quickly and easily, had every service they require to make their child the best they can be given freely and plentifully, or had full support in education from Day 1. Maybe there are some out there, but it is rare to find.

From the moment we suspect our children are struggling, we enter a fight: a fight for therapy, a fight to be listened to, a fight for the best education for our children. We fill in forms just to have things declined by people who have never met our child and, as if this was not bad enough, we then have to fight a society that still views autism as “Naughty Child Syndrome” or “made up.” If we complain, we are seen as troublemakers; if we call too often, we are pushy; and if we write about our children on social media, we are either over-sharing or attention-seeking! It makes no difference what age your child is or what ability they have, one thing I have found in common is the fact we all seem to have to fight at some point.

Can I tell you something parents? Our children are worth it. Keep fighting.

4. The Constant Vigilance

When you have a child or adult who struggles with communication, be they verbal or not, it is a guarantee they will need more support and supervision than others. When your child has no awareness of danger and is vulnerable, you have to be always vigilant. Even when they are out at school or with carers, that vigilance never eases. We have to be aware of where they are and who they are with always because we have children and adults who are easily confused and anxious.

We have to think about dangers long before they appear, like water, roads, open doors, sudden noise and objects they may eat. We live with a heightened level of anxiety and awareness that other parents often misinterpret as overindulgence or being hyper-protective.

It’s hard, I know that, but you can do this!

5. The Worry

The worry is always there. Worry about change and how it will affect them; worry about political issues that could affect future benefits; worry about what will happen when we die; worry about whether they will ever be accepted and understood. Before they start their education, we worry about teachers and friends, and then as they get older, we worry about jobs and relationships.

Yes, all parents worry about their children, but we have so much more to think about. Nothing is taken for granted when your child has autism. Friendships are confusing and stressful, language is a mystery, and repetitive movements are misunderstood and mocked. We are raising babies the world finds fascinating yet exposed, interesting yet misunderstood.

We have reason to worry. Yet, we also have reason to be at peace. There are teachers who will care, assistants who will go that extra mile and employers who are ethical.

Stay positive. Together, we can help make the world a better place for all our children. 

Have you been there? Do you know the looks, the exhaustion, the fight, the vigilance and the worry? Welcome to the wonderful world of autism parenting. It’s hard, but well worth it. And it’s great to find others who understand.

Siblings on the Spectrum

Growing up, I knew I wanted children—a family of my own where I could let my children know that they were loved and always be there for them (somewhat opposite to my upbringing).

I met my hubbie as a single mum: two became three, then became four with the arrival of T, and then five with D’s arrival. I felt complete.

Bearing in mind that T and D were 18 months apart, it was a busy time. I’d either be balancing one on each hip or smiling as my little “pack” followed me everywhere, leaving behind a trail of Match Attax cards (in T’s case) or play food and Playmobil characters (in D’s).

And then something unexpected happened. Teachers at D’s nursery recognised within her first term that her speech, social skills and ways of doing things were far behind her peers. We investigated online ourselves whilst waiting for the first of many appointments and one word came up again and again—Autism.

D’s official diagnosis came when she was 4.5 and T was 6. It was an unfamiliar path we travelled as we journeyed from grief (for the child we wouldn’t have) to fierce protection of our frightened little girl who suddenly had this “label,” one that she would always carry.

It was hard to explain to T about his sister. We took to saying that our brains were made of puzzle pieces and, with his sister, hers overlapped in some places (areas) and had a bit of a gap in others. It seemed to help him; he’d see D melting down or becoming extremely anxious and say, “That’s her puzzle piece doing that, isn’t it?”

(I used this puzzle piece scenario before I was active on social media and realised that puzzle pieces seemed to be used by a lot of autism organisations. It made me think, “Jeannette, you’ve got this, now do more to get awareness out there.”)

There were times when I sensed that T felt embarrassed. For example, if he was eating lunch in the hall at school and D was refusing to come in because she was overwhelmed by sensory issues. There were times when there’d be a sports day or assembly and I felt torn between the two, wondering whether to comfort my overwhelmed daughter or watch my son compete. In a way, it felt easier on T that D received her SEN statement and moved to an SN school. We wanted him to enjoy school life without feeling over-protective towards his sister all through his school day, because he did.

When T was diagnosed with high-functioning autism at age 10, it was more of a relief than a surprise. His traits were becoming increasingly apparent in public, and however much he masked them during the school day, he was having issues with fellow pupils and teachers.

So, my determination to raise awareness and acceptance of autism doubled.

Having two children on the vast autistic spectrum isn’t always easy. At times I feel like I should have a referee’s whistle, but that wouldn’t work: T would respond quickly (as his passion is—and always has been—football) but the sudden, sharp, shrill noise would terrify D.

I can’t say they’ve ever really “played” together. Whether it’s an attempt at a board game or a splash in the pool, T will always make it competitive, try and guide D into a contest, and then get frustrated and annoyed when she doesn’t want to or melts down. It’s at those times that I hanker briefly for the traditional “Oxo advert” family, the children all smiling around a table, eating the same food and cracking jokes. But it’s only briefly, mind.

It’s not all doom and gloom, of course. D might not “get” traditional jokes and humour, but she absolutely loves “Keeping Up Appearances” and “Mr Bean,” even though she’s watched them so many times she knows exactly who will say what and when, slapstick humour obvious . T is more droll and more sarcastic in how humour and tone. He also does a pretty fantastic withering glare, which more-often-than-not is aimed at his sister, if he disapproves of something.

But, they have each other’s backs and are extraordinarily protective of each other, even if it’s not always shown.

I love them both, and am so proud of them and the daily challenges they face.

An Autism Mom’s Feelings About Grief

“You can’t stop the tide.”

I told my autistic son this during his first trip to the ocean. The vastness of the water frightened him and so, in his own way, he sought to control it by holding out his little hands and bravely shouting at the waves to stop. We’ve all been there, struggling to get our footing when the riptide moments of life threaten to pull us under.

Never is this truer than when someone you love is dying. This summer, my family is preparing to say goodbye to my father-in-law, the kindest and most hardworking man I’ve ever known. Over the last few days I’ve worried about and watched my sweet boy struggle once more to stop the tide. Except this time it’s the vastness of his emotions that frightens him.

People with autism are so often portrayed as lacking emotions. But my boy is often flooded with them, to the point that he nearly drowns. When this happens I wade through the murky depths of his feelings and try to help him stay afloat. This isn’t easy these days since half the time I feel like I’m drowning, too.

Grieving with a special needs child, like anything else, seems so much harder. The meltdowns, the overstimulation, and the judgmental stares of strangers heighten the moment. Add to that the common struggle of helping your child make sense of something that you yourself don’t understand. I wish I could impart some kind of wisdom to other parents out there that, like me, are treading water in the sea of grief, but I sadly don’t have any answers.

Instead, I want you to know you’re not alone. In the chaos it’s easy to feel isolated. All the things that make your child’s day easier—staying on schedule, eating healthy meals, and having a routine—are nearly impossible in these situations. It’s easy to panic and flail as you frantically try and get some semblance of control over your universe.

It’s OK if you stumble and fall along the way. Saying goodbye is hard and it should be. But it’s important to remember that when you struggle for control, you risk drowning. It’s only when you lay back, trust the water, and float that the tide brings you safely back to shore.

The Autism Community: A Community of Strength

When my son was first diagnosed with autism, I enrolled in workshops that would give me valuable insight into a condition I knew very little about, but I rejected the support of the autism parenting community.

I didn’t want to hear what they had to say because my only taste of it had been a bundle of negativity. I couldn’t cope with that as I had plenty of my own I could pass on. I wanted to hear stories of hope and stories of courage, and I feared that I wouldn’t find it there. Don’t get me wrong: I didn’t want false hope or lies, but I needed to find people on my wavelength. Deep down, I knew that might be an impossible task given what my wavelength is.

I learned to find my own way and some of that was to my advantage. I relied on my own innate parenting skills to muddle through the challenges of parenting a child on the spectrum.

Along the way, I’ve learned an awful lot about myself, and I’ve also learned how to choose my battles wisely and increase my patience (some would disagree). Most importantly, I’ve learned that my way is not the only way (though some would argue I’ve not mastered that one yet).

As time progressed after Joseph’s diagnosis, I became more confident in my own knowledge. I didn’t necessarily believe everything I read and I felt more comfortable looking to the community for support and guidance. I saw that people had different beliefs and strategies for dealing with their autistic child. I saw that some believed their child was a blessing, whilst others struggled to comprehend why they had a child with autism. I saw people debate over what they perceived to be the correct use of autism and autistic, and I enjoyed reading different takes on the subject.

What I didn’t expect was that some people would view it as an opportunity to criticise and attack other people’s views and life choices. I’m not sure whether it’s because it’s easier through social media, but I doubt very much that the comments being made would be made face to face.

Our children’s autism journeys are unique, and we try and raise awareness globally by educating others that there are lots of different facets to autism. Why is it so difficult to accept that we as parents are unique too; that we do not all parent the same and we all have different experiences?

When I started writing my blog, I dared to push my head above the parapet and say the things I wanted to hear so many years ago when I was first looking for advice and help. I wanted to be able to feel comfortable saying that acceptance was hard and that there were days I wanted to kick the shit out of autism for the challenges it brought my son. I did not want to be vilified for owning up to those thoughts and I wanted others to know that they were not alone.

None of these thoughts make me love my son any less; they actually make me love him more, if that is even possible. Every single one of us wants what is best for our child, we just try and achieve it in the way that works best for us.

Let us learn from each other and accept and embrace our own differences, not just those of our children.

We are all striving for the same destination—let us gain strength from each other.