Although we have four children, we often say we have five – because while all parents put their children’s needs first, in our home autism is always a top priority.
Having three children with this condition – Logan (10), Flynn (8) and Sullivan (7) – was a huge learning curve because before Logan came along I had no experience with autism at all.
A friend of mine was going through the diagnostic process with her child when I was first pregnant and I was terrified at the thought of it. I remember thinking having a child with autism was my worst nightmare. But looking back now, I can see how ignorant I was – I thought it was the worst thing in the world, and of course it’s not.
Logan spoke slowly but we put it down to the fact that his sister – Ellie (now 15) – always looked after him and spoke for him. Then I got pregnant with Flynn because we decided it would be better if we had a smaller age difference if we had another child — and he was only a few months old when I got pregnant with Sullivan, which was something a surprise.
At that point, we didn’t know anything about autism, but [while pregnant with her fourth child] I was at some sort of assessment with Logan when he was about two and a half and autism was mentioned. I was so shocked and completely devastated. I remember going to my mother’s house and although I’m not much of a screamer, I just yelled. I broke down completely and told her that I was sure I would have three sons with autism as Flynn was already showing the same signs as Logan at that age and I knew I would have another boy.
All the things that I had dismissed as something different now began to fall into place when I compared my children to those of my friends. And of course I was right and all three were diagnosed with autism – so yeah, it’s fair to say life is incredibly busy.
Logan and Flynn are a little quieter, but Sully is very active. He is preverbal and has the most sensory problems. Everything revolves around his needs, quirks and differences. For example, we have to arm ourselves and distract him when the toilet needs to be flushed – at this time of year one takes him outside while the other rushes around and flushes all the toilets in the house, otherwise he has to go through a ritual that involves them all rinsed four times and the lid opened and closed.
We also need to coordinate our showers as the noise is too much for him and beeping sounds really upset him and give him a lot of comfort. My eldest is truly amazing, she takes it all in stride and plans when to shower or dry her hair so it doesn’t upset him. In fact, I keep a hair dryer in my office so we can fix our hair or makeup and get away from the noise and stress of the house for a few minutes.
So our days are very busy and the night can be too because while the others are sleeping well Sully has a lot of problems because he has extremely sensitive hearing. So we can’t do anything in the evening – not even boil a kettle, which is very difficult as I love tea very much and want nothing more than to sit down for a cup of coffee in the evening. It sounds like a silly thing, but it’s the only time I can catch my breath.
But despite all that, the boys are fantastic and have a lot of interests that they particularly enjoy – it’s wonderful to see. And they taught us so much patience – we can’t raise our voice. While we may internally scream as we try to explain why you can’t spill three gallons of water on the floor or why they shouldn’t be holding a knife, most parents would rage, but we have to stay calm.
With all the sensory issues the boys have, it has been very difficult to find clothes for them during the various lockdowns as things like tags, inseams and even the material or weight of certain garments can bother them – and when there was nowhere else Feeling the material to see if it was suitable gave me and my friend Nina Shelton the idea for Sully and Juno, a line of sensory apparel that we would design and send to manufacture.
The pieces are aimed at people with sensory issues and are very specific in terms of shape, width, colours, they are all made from sustainable cotton and organic and the chain [of manufacture] is very transparent so we know employees are well looked after and paid.
Initially we started in the garage and only wanted to work a few days a week. But then it all took off and we now have five people working for us (and some exciting news in the pipeline).
We were so pleasantly surprised how it started, but it really wouldn’t have happened if we didn’t have the great support and network of people around us. That was priceless because otherwise nothing would have happened, even if we had a million euros behind us.
Being a parent and trying to run a business is hard enough, but I’m in a different situation as I can’t just ask a babysitter to come and pick up the boys – so everyone who helped, not just now, but all the years have been amazing and I couldn’t have done it without them.
I mean it when I say that friends of parents who have children with special needs don’t get enough credit, they almost have to take care of themselves because they do so much and have to adapt to our lives much more than they do would definitely do. I am so thankful for them and I appreciate each and every one of them.
Their school teachers were wonderful too – and for the hours they were there the children were happy and cared for and I was able to get on with my day. Rob was amazing too and so supportive. So everyone together helped make it happen.
Nina and I have worked so hard to get our business off the ground and successful, but it really doesn’t feel like work. It can be isolating having children with disabilities and that has been a fantastic outlet and really good for my brain. We’ve had a great journey so far and are both looking forward to the next stage.
In conversation with Arlene Harris
Visit sullyandjuno.ie for more information on the clothing range
https://www.independent.ie/life/family/i-remember-thinking-that-having-a-child-with-autism-would-be-my-worst-nightmare-now-i-can-see-how-ignorant-i-was-41898663.html “I remember thinking having a child with autism was my worst nightmare. Now I can see how ignorant I was.