There are some times when I feel everything is working out well and then something occurs that pulls the rug out from under me.
My son was a Beaver and is now a Cub and the transition has been rather bumpy. Samuel tends to get overwhelmed in certain situations.
Recently there was an incident at Cubs and I had to go and collect him. He was dreadfully upset. Samuel finds team games, turn-taking and losing very difficult. If he is “caught out” or if he perceives a slight then he can have a major meltdown. I did offer to stay with him if he wanted to stay on but he was adamant that he wanted to go home. Then once at home he became terribly upset because he wanted to go back. I never try “to win” in these situations. The best approach is to show lots of empathy and I did manage to calm him down. If you have never seen a meltdown by a child with ASD then you need to imagine a toddler tantrum but worse. The difference being that a meltdown is not manipulative or a means to attract attention it is an automatic reaction to complete sensory overload.
On the school run the following week we bumped into one of the Cub leaders in the local Post Office and found out what had really happened and how Samuel had reacted and I felt the rug being pulled out from under me.
Next time at Cubs, I decided to stay as a parent helper. When I see Samuel with children his own age I become acutely aware of the widening gulf between my child and the others. It breaks my heart at times. I try not to let it get to me but, it is very hard.
One of the cubs asked me “Are you Samuel’s Mum? Are you here to stop him being naughty?” I just smiled and said I was there to give Samuel support. But that is always the first reaction. When you have a child with autism and they experience a meltdown the assumption from others is that your child is being naughty.
As a family there are many things that we don’t do, simple things that other parents don’t think twice about, but for us would cause intense stress and anxiety. I can count on one hand the number of times we have gone out for a meal as a family and Samuel is now nine. That is probably my fault though, I need to be braver, to “man-up” and run the gauntlet of the stares that are inevitably thrown in our direction.
We rarely go shopping or if we do, we time it to when we know it will be relatively quiet. Our local shoe shop know us very well and they are exceptionally good. Whenever we take Samuel to the shoe shop for school shoes we always go mid-afternoon. When Samuel is in the shop he literally just runs up and down from excitement. Over time you get to learn to ignore the looks of other parents or at least try to.
He also finds it very difficult in making a choice. This is a nightmare at times particularly in the newsagents when he is choosing which magazine to buy. Many a time I have bought him two magazines. Probably not the right thing to do but at least it avoids a meltdown and we can get out the shop!
On occasions I take him to Tesco to do a spot of shopping. I usually take him early evening when Lydia is in bed. I have a routine that works quite well. I prep him in the car before we get out to reinforce the fact that we are only getting the items that are on my list. Sometimes I let him be in charge of the list. Sometimes that can be a bit of a mistake as he has rather a loud voice. I try to look nonchalent as he yells out “beer”, “wine”, “Mum what’s Tampa….?” Time to go Samuel!
Children with ASD can be quite literal. “Jump up here” said the Pediatrician to Samuel at our last appointment. “You don’t actually have to jump” I intervened as I saw him preparing for a giant leap onto the couch. “Sorry” apologised the Registrar. Even professionals get it wrong at times!
ASD is always changing. Certain things get better with time and then something else is added to the mix as another challenge. Parents of children with ASD tend to feel far more tired and prone to depression than parents of other children with special needs. You can lose sight of yourself and the person that you once were, you tend to feel guilty if you didn’t handle a situation as well as you could. So for everyone out there caring for a child with ASD, don’t beat yourself up, “be gentle with yourself, you’re doing the best you can”.