These were the words my five year old said to me yesterday. It was just after he had come in from the back garden, where he had been trying to play in the water with his older brother J. J loves water and he’s not too keen on sharing it with anyone else. B had tried many times to play with him and when that failed he tried to get his own water to play with, only for J to come and take over that too. He eventually just gave up and came inside, where he climbed up onto my knee for a cuddle.
His words got to me and my heart broke for him. He has so much responsibility on his little shoulders. As well as the normal things he’s asked to do to help his brother there are the unseen things, the things we don’t really think about. The efforts he makes to play with his brother, the allowances he has to make for his needs, the times he has to forgo doing something he wants to accommodate his brother and the times he keeps his sister occupied so that we can deal with one of the many disasters that seem to befall J.
He’s right, Autism is hard. It’s hard for everyone. For the person who has autism, for their parents, grandparents, siblings and at times their wider family. It has an impact on everyone. It is hard for each person in a different way. For me it’s hard to watch his tears when he can’t tell me what’s wrong. My husband has to carry and lift him when he’s sick or distressed. For us, as his parents, it’s hard by being physically demanding and emotionally draining to see him being sick again or observe another child doing something J will most likely never do. For his grandparents it’s hard because he needs more looking after than a neuro-typical child of his age. His cousins need to be more patient and show more tolerance, as well as helping him with many things. The rest of our family make accommodations at parties and indulge his interests, in spite of the noise or repetition involved. His sister is a little young to fully understand, though she can be on the receiving end of a push or shout because she’s doing something he doesn’t like or has something he wants.
For B I think the impact is hard to take because he’s fairly close in age to J. Under different circumstances they would play meaningfully with each other and explore their surroundings together. They would probably still fight like cat and dog but they would also be partners in crime. B would have a big brother to lead the way and show him how things are done. He wouldn’t have to move aside to stop his brother having a meltdown or play alone because J just isn’t interested in joining in.
Don’t get me wrong, it’s not all doom and gloom. Our children are very happy and do lots of fun and exciting things. They all get lots of attention and experiences. We are always taking them out somewhere, going for walks, visiting parks, going for trips to the seaside or visiting soft play centres on rainy days.
We also have positive experiences with J. He’s very loving, often wants cuddles and regularly gives us big smiles. His joy is simple and he loves to show us when he’s happy. He tries so hard to achieve things and enjoys sharing his success with those around him. The delight lights up his face. B is a little more complicated and a little harder to please in many ways.
Its at times like these, when B bares his heart and shares his frustrations, that I wish I could fix it all for him. That there was some miraculous way I could give him the big brother he craves and the playmate he would love. I hope that in time W will become this for him and that J will also be able to interact a little more fully. I pray that he can be strong enough to know that it’s not personal and that his brother still loves him and needs him around. Most of all I wish that he didn’t have to feel this way at all, but I reassure myself that it will help him to become resilient and to realise that life can be hard. Hopefully it will mean that he can appreciate that not everyone has an easy time in life and maybe that will help to make him more understanding and kind. I suppose really I just want something positive to come from his hurt and the things he misses out on.
So yes, Autism is hard, though I live in hope that it will help to make us better human beings and stronger people.