Motherhood. How do you write about something that is at once so beautiful and hard and heartbreaking without betraying your child just a little bit? When you have an experience that deviates from the norm, this is a particularly difficult question. Even to close friends, sometimes admitting we have had a hard day can feel difficult, either from not wanting to dwell, or indulge or simply from not wanting to feel so different from the mothers around me. Because our hard can mean something quite different to a typical family’s hard.
Arthur was diagnosed with autism at age 3, a year after his little sister was born. From the age of around 18 months, I was less and less able to identify with others experience of motherhood. From the slowing down of development, the lack of speech and the extreme meltdowns, it was becoming clearer that what was happening in my house, wasn’t happening in others. People talked about how their children were such sponges and wasn’t it adorable how they copied everything and were so interested in the world. I couldn’t relate any of those words to Arthur, who seemed to be uninterested in most things and hadn’t changed in months, except to stop doing things he used to want to do. When his little sister arrived, traumatized is probably the best way to describe how he reacted. More then anything my experiences at this point were of extreme failure. My son wasn’t thriving and I felt barely capable of looking after both my children’s needs at once.
It has been 5 years since his diagnosis.
5 years of researching and trying therapies, of applying for EHCPs, begging for assessments, writing angry emails, having to apologize to innocent bystanders for his behavior and my frustrations. Of teachers and therapists telling me what I’m doing wrong and what I should be doing better. Of not feeling competent to raise my child on my own but needing constant professional input. Of feeling like nothing I do is enough. Like trying to build a house with no foundations, my son has chunks of development that are missing or skipped for various reasons. He is not simply doing things a bit later then most kids, he’s doing things very differently. Learning how to communicate with him, how to try and play with him, how to help him, has been a long and hard road. Much of the extreme pressure comes from the fact that for many children early intervention is the key to turning everything around. Not less autistic but much more able. Able to communicate, self-regulate, play and so many other skills. It was the carrot that was dangled enticingly in front of me from the moment we suspected he was autistic. It was what drove me into hours and hours of research and to spend more money then I had to spare and to despair as nothing much seemed to have a deep impact. He has had to work so hard for each and every skill he has gained in his life. None of it has come easy and I’m so proud of everything he has learned. But the gap between Arthur and his peers has continually widened and with that, our family life is increasingly different from those around us.
How do I mean different? It’s in the many sleepless nights, that for most families are over by the time school begins. It’s in the minute planning that goes into a day trip or even running errands to preempt any possible thing that could make it all go wrong. It’s in the meltdowns that are so severe that even after all these years I’m left shaken and crying with my 6-year-old daughter the one to comfort me. It’s in the constant threat of losing services we desperately need, it’s in the meetings I attend when each and every deficit is laid out bare in black and white, from which you cannot pretend or hide. It’s knowing that I’ll be doing this for years to come. It’s the constant fear that it will be my fault if he isn’t able to live a full and happy life, that I haven’t done enough, found the right help, put in enough time. It’s the fear that one day he’ll be able to articulate how he is feeling and that I have been judging everything all wrong. I can only try and read him, watch him, read the words of autistic writers, follow professional advice, and hope that I’m getting it right enough. It sometimes feels like trying to hold onto the air.
Arthur is an extraordinary boy who seems to teeter between joy and sorrow with barely anything in between.
It is incredibly hard to watch helplessly as extreme anxiety takes hold and prevents him from living a freer life. His need to feel in control in a world he struggles to understand means I spend a lot of time doing everything possible to keep things smooth and calm. But I also have a typical daughter who has needs of her own and I struggle with disappointment in myself at not being able to raise her in a way that I naturally want to. It all feels like a compromise. While I don’t doubt that some of these compromises are the reason she’s the emotionally mature girl I know, it’s hard to be constantly feeling like I could be doing a much better job if only I had *insert appropriate excuse here* (more sleep, not dealt with that meltdown this morning, could say yes to that outing, didn’t have to fork out money for a babysitter for her brother, had less screen time, could change plans last minute, didn’t have to follow that exact routine at the playground, not have story time interrupted by a flooded bathroom, etc, etc).
Reading this you’d be forgiven for thinking that being Arthur’s parent was an awful thing. That is far from the truth. This is why it can be so difficult for mothers of disabled children to share their stories. It ends up meaning that whats out there is an awful lot of inspiration porn (thank you, Stella Young, for coining the phrase that refers to the ablest tendency to objectify disabled people for benefit of non-disabled people). Non-disabled parents, like myself, can fall into the trap of either demonizing a disability (it’s ruined our lives!!) or making it seem all rainbows and unicorns (my child is the source of all my inspiration). The truth is, like anything in life, it’s a big old mess of good, bad and indifferent. Family life can be complicated and hard for us but it isn’t bad. Do I wish sometimes it was easier? Hell yes. There are moments when I think I can’t take another meltdown, thrown yogurt or missed occasion and wonder what the hell I was thinking having children at all. But they are just moments and the feelings pass. On the flip side would I swap all I have learned about humans and love and life, in order for my son to have a more ordinary life? It’s a hard question to answer when you know in your heart you wish you could take some of the pain away from them. And there is pain. But I also know that, just like all the difficulties I’ve experienced, it’s impossible to separate yourself from your life. How could I possibly wish away so much that is good? Life would definitely be easier but would it be better? Sometimes all I have to do when things are tough, is ask myself if I would rather have an easy life or a good one? That and some sleep usually do the trick for getting me out of a pessimistic rut.
The unexpected joy of having a child who belongs to a minority group that I had very little experience with for most of my life, is that it has expanded my world. As a lifelong feminist, how much thought had I given to the specific struggles of disabled women and mothers of disabled children? Not enough. Who else have I not been giving enough thought and space for? Arthur is the one who has helped me understand this the most. MMD to me means a place where stories can be shared without needing to inspire or gain sympathy. It is a place simply to be and be seen in all our differences.
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