I recently asked my friend Dave if he would be interested in writing a guest blog for The Life of Reilly. He’s always been fascinated by Reilly, I’ve watched them bake, prepare food,set up tracks together and Dave is always looking for new ways to communicate and engage with him. I have never considered the other side. The guilt others can feel when they see their own friends struggling. This blog has had me in tears. ❤️
Being a parent can be tough. We can all agree to that. There are times of great joy and pride, especially in the early years when they begin walking, talking and doing all the funny things toddlers do. Even the ‘terrible twos’ and ‘awful fours’ didn’t detract from it too much for me. I was just revelling in being able to have simple conversations with my little boy and other than the regular tantrums he was generally really nice to be around.
The other end of the scale, of course, is the teenager. Where they talk to you in grunts and go all moody for the slightest reason. I can deal with that, as foster carers we’ve been dealing with moody teens for 20 years. You have a spat, go your separate ways and still end up having a decent conversation with them later… if you’re lucky.
The bit in between this is the most frustrating. The 5 to 10 year old phase. The bit where just the sound of their voice saying ‘Maaam!’ Or ‘Daaad!’ for the thousandth time that morning grates on you so much you keep thinking ‘Jesus Christ I wish he’d just shut up’
It’s more than that of course. It’s the communication itself that winds you up. The incessant whingeing, demanding, trying to get each other into trouble, being awkward, the backchatting… the list goes on…
I don’t mind admitting that quite often I’ve wished that, even just for just one day, he would just stop speaking.
But then… I’m the father of a neuro typical child and when he is quiet, I can enjoy that silence, knowing that he’ll be bending my ear again in a little while.
The amazing family at the heart of this blog have been there from the beginning. Clare, my wife, and Christine were pregnant at the same time and we worked together before and after the boys were both born. We socialised and holidayed as families and watched them grow and develop together… until they didn’t.
With heavy hearts we watched this family go through the realisation process and diagnosis of Autism for their son and with a sense of guilt, we watched our boy develop rapidly whilst Reilly just… didn’t.
Watching Reilly’s autism take shape was heartbreaking. His melt downs and challenging behaviours were one thing but the fact he is non verbal is the thing that has always affected me deeply. Watching him and his parents not being able to communicate is what makes me give my head a wobble when I get frustrated about the incessant kids voices around me. I know that Christine and Shane would give anything to have Reilly shout Mam or Dad just once never mind a hundred times. To have a simple conversation about what he wants for tea or where he wants to go but most importantly, to be able to ask him what is wrong when he gets upset.
In recent years things have changed. We moved out of the area and our working lives have gone in different directions which means we don’t get anywhere near the time together that we did or that we’d like but it does happen and it’s always a joy to have them around.
I’ve never found being with Reilly difficult. He’s different that’s all. Challenging at times but it’s never disturbed or frightened me. It’s never dissuaded me from trying to interact with him on the most meaningful level I can. I try every time I’m with him and mostly he seems to ignore me… and that’s ok.
Recently though, it’s been different. We know that he’s beginning to communicate in a multitude of different ways and every little win makes my heart swell for them…
Out of the blue last week, Reilly asked to come and see us and as always it was nice to have them here but what happened that day just blew me away.
Reilly went to our kitchen and I went with him as usual, just to see he’s ok and try to gauge what he might be after. He opened our food cupboard and our conversation went as follows.
Are you hungry?
Reilly made the sign for Please/Yes
Ok… what would you like?
He went to the other bench and tapped the bread. Now I know Reilly loves toast so…
Do you want some toast?
What would you like on it?
He opened the cupboard and pointed to the Nutella.
Ok, toast with Nutella?
I was already amazed but I wanted to see how far I could take this with him. He went to the table and took a seat.
Do you want thick bread Reilly?
“No” …spoken, not signed
Would you like butter on?
So I made him his toast and, after confirming with Christine on his current preference for shape and construction, I put it down to him.
He signed “thank you” and our conversation was done and I’ve never felt so overjoyed to talk to someone, to communicate, even on a simple level with someone I thought I might never be able to. This was a full blown conversation too. Question and answer, conclusion reached and he was happy.
I, however, was over the bloody moon.
We take communicating with our children for granted. We get frustrated at it at times but I never seriously wish my son would stop speaking… I know how hard it must be and I wouldn’t wish it on anyone.