Most parents buy their children clothes, toys and other essential items, and use their garden space for barbecues, swings and kicking a ball about. However, I am an autism parent and that makes me think quite differently at times. Both of my children have significant sensory needs. My son has other complex medical needs and his twin sister has crippling anxiety. Helping them has become a matter of priority for me.

My non-verbal son really needed a safe place to go to help calm down from all the stress of trying to communicate and coping with his need to control his environment. His sister needed a personal space where she could escape from all of the social pressure she is under every day at school, and where her anxiety could diminish.

We had no spare rooms available in the house and, as the property is rented, building an extension was not a possibility.

So I looked to the garden.

I took the twins to some sensory rooms and watched to see what things they enjoyed best. I had our occupational therapist carry out a sensory assessment on them both and then suggest some equipment that might help them.

We then set about fundraising and contacting some charities to see if anyone could help us.

We asked a local shed-building company to give us a quote. They custom-built a shed to fit neatly behind our garage and erected it all for us. Then, we had a local flooring company come and floor it for us.

We bought a basic blackout blind locally, as well as some cushions and a blanket. The most expensive piece of specialist equipment we ordered was something called a sound wall. This is a wall with coloured handprints that respond to touch with eight programmable levels for different sound effects. My non-verbal son has vision impairment, so the bright colours and instant feedback of sound were perfect for him.

We also ordered a plinth and a bubble tube and colour-changing lights that have a remote control that the children can use. Finally, we added some beanbags, cushions and blankets.

So far we have kept it simple, and it is a magical place indeed.

One simple shed has become a sensory sanctuary for both children, giving them a safe space to be alone, in control and away from the demands placed upon them every day. It is their space and, although they are supervised, it is the one place where they can be who they want to be.

What I never, ever, expected to happen though, was that the shed would connect my children in a such a beautiful way. Away from peer pressure, my daughter has been unafraid to just enjoy her severely autistic brother in the way she should. As he presses hands on his wall, she has sung along with the wall to him, danced with him and found props to help him understand the songs. She tells him the colours he is pressing and changes the sounds for him too. It has been absolutely beautiful to watch.

With no television to distract them, no pressure from anyone and no limits, they have found their own wonderful way to connect. Like the simple beauty of seeing each other through the window!

From start to finish, the sensory room cost less than £3,000 to complete. While it’s a lot of money, the result for me has been truly priceless.

 

 

As I think back to the beginning of our life with autism, all I can say is that it has been one rollercoaster ride after another. I have fallen and gotten back up, time and time again. I’ve learned more than I ever thought would be possible from two little boys 30 years younger than me. It hasn’t been easy, but through strength and courage we continue to move on, each and every day. It’s really been what we have learned along the way that has gotten us to where we are today.

Hope is such a simple word, yet a huge part of our life. I’ve learned the real meaning of hope and how to cling to it every day.

I first realized that I had no other option than to turn to hope for a better tomorrow shortly after Andrew’s second birthday. Andrew was two and Trenton was three. I had been sleep-deprived for almost three years by then, and the life I knew before autism was no longer in the rearview mirror. It was gone forever. I knew in my heart on that particular day that Andrew had autism. My mom had sent me a picture of Andrew’s very long line of random items while she was watching him. He didn’t want to do anything else that day except line items up. In that particular moment, I stopped what I was doing and mourned for Andrew. Then, a few minutes later, I turned to hope.

I never know what each day will bring or what challenges we will face that day. Some days are harder than others and some challenges are way more exhausting than others. However, we continue to hope for the best. This was very hard to do after Trenton’s diagnosis, when I was trying to adjust to both the new diagnosis and our new life. But I learned that, if you can get past that point in your life and focus on hope, you will have a much brighter outlook on your new life despite the challenges.

While clinging to hope, I’ve learned that life is really all about the small things. They bring the biggest and brightest smile to not only my face, but to my sons’ faces as well. The first time I truly realized how amazing the small things were was the day Trenton wanted a pancake. He was three years old and I was trying hard to get him to use a picture exchange system. He was upset and I couldn’t figure out what he wanted. Then, he suddenly showed me the picture of a pancake. As you can guess, those pancakes were made immediately! He ate one and we all cheered! He had communicated what he wanted to eat to me for the first time.

That was the day that I realized my life would truly be all about the small things from then on. At one time in my life, I would have taken that for granted. But now, I don’t take anything for granted, not even the small things.

As our journey goes on, I keep learning. I’ve learned so much along the way. I look forward to each and every thing that the boys teach me. Even though we have tiresome challenges daily, every single moment is truly amazing and beautiful with them. Our hope for a brighter tomorrow is one of the keys to helping us see just how beautiful we can make our own unique and challenging life better.

I think I speak for most parents of autistic children or children with autism when I say the biggest lesson I have learned is one involving friendship. (I’m never really sure how to word because both ways can, and have, upset parents in the Autism/Autistic Community. So I will use both.)

And with that I mean that we don’t have, or can’t sustain, many! It isn’t because we don’t want them, or can’t make them, or aren’t friendly. It’s not because we aren’t likable, I hope. For me, in my situation, my circle of friends rapidly deteriorated after my children were diagnosed. People drifted away and stopped talking to us.

I have absolutely no idea why. I guess it could have been a number of things, really. To be honest, I don’t dwell on it because, after the people who weren’t really my friends in the first place stopped talking to me, it highlighted who my TRUE friends were. There may only be three, but they are so close that they are like my sisters. One of them actually is my sister.

Autism has taught me that only the strong and selfless people will stick around to support you.

When my husband, Kenny, and I started our family, lots of friends in our circle of people also were starting a family, and so naturally you lose some and gain more. It’s just the way the world turns—life goes on and friends rotate.

While other friends’ lives settled into routines, and their children hit expected milestones, my life was chaos. It was unstructured and messy. I was irritable and stuck in a life that I hadn’t ordered, with very few friends or people I could trust and talk to, or who understood my children and their quirky ways.

At that point in my life, I learned that autism doesn’t really let you have many friends. People didn’t understand my worries or fears for my child, or my ramblings and rants about people or services that had done us wrong.

Autism was lonely.

My circle of friends diminished into what can only be described as literally the best friends I could have ever asked for. I had never experienced such unconditional love from people that weren’t related by blood. It was overwhelming.

One of these friends is my sister, and the other two are my sister’s best friend Louise, who we “shared,” and her sister-in-law, Natalie. We formed a bond that was so strong not even our partners get a look in. Besides the usual conversations and friendship, we support each other and are always there for each other, in a flash if necessary. We have the best support network that I could ever ask for. It may just be mainly emotional support, but to me it’s the most important kind. My friends are selfless, kind, supportive, funny and accommodating.

Having a child with autism—or two, in my case—limits my social interaction to such an extent that I run the risk of neglecting my friendships and other aspects of my life. Similarly, having a child with autism has the ability to create friendship bonds so strong, you know you’ll never worry about having friends again. Because these friends are for life and, whether they like it or not, they are not going anywhere.

Autism has taught me that only the strong and selfless people will stick around to support you. When you find friends like these, you hold onto them for dear life, because they are so precious that they become an instant part of your family. Above all else, autism has taught me that not everyone wants to stick around for the ride, and that’s fine because after all of the energy has been sucked out of me, the last thing I want to do is fight for friendship!

All I want to do is open Messenger and find out what Beck has cooked for dinner that day, how Louise has styled her hair this week, and how many dresses Nat has bought this time. I want easy, comfortable friendships, and these girls are the most uncomplicated and supportive friends I’ve ever been privileged to know.

Thanks girls!