I'm so frightened
The truth of being a single SEN parent
This post is quite “off-brand” for me but I’m frightened and I need to put my fear somewhere.
My son turned eight years old last week. We swam in the lido, ate pizza, and went to see Paddington the Musical in the West End. I’m so grateful for his little life, but I need to be honest with you.
As another year turns, I am hit with the most immeasurable grief.
Albert is autistic, and he lives in a parallel world to the one I inhabit. His form of playing is acting out scenes from his favourite movie and tv shows. He can’t read or write. Hand him paper and pens, and he will scribble on the page, the way a toddler might.
He has a handful of functional phrases that he uses when he needs or wants something. But when you speak to him, he is completely blank. He spends hours repeating scripts from TV, but he’s never had a conversation with me. He isn’t interested in other children.
I take him to beautiful places with children’s activities and he can’t access them. All he wants to do is jump around and wiggle a length of string.
I love him so much, but I’m scared. And sometimes that fear makes me angry. Sometimes I shout, “Why can’t you do it?! Why can’t you just focus?”
I was out with a group of friends recently, and they were imagining what kind of mothers-in-law they would be. And it stung and scared me because the future
When I was pregnant and afraid, sobbing into my grandmother’s arms, she held me and said, “Aimée, it’s life. It’s life. It’s not death.”
I am holding onto that tiny fleck of wisdom at the moment. That whatever I am facing right now, is still life.
But I am still afraid. The world is beautiful, but I know that it’s also an unfair and unkind place, too.
I’m trying so hard, but I don’t know what to do for my child.
For many years in the 1960s and 70s, Mum worked in some of, what were then, pioneering residential schools for children with autism. Much of what you describe feels very familiar from the stories she told and continues to tell. We live in a very different world now, and we have different attitudes towards autism - in many ways, we've progressed, but in many ways, we haven't. But she always said that for each and every one of those children, there was always something they were good at - they always had a special gift, even if it was just one thing, and even if it was as simple as just making a cup of tea. It's true, it takes time, and much nurturing - something which, however hard it is, I know you offer Albert in abundance - and it's not an easy journey. For a long time, Mum followed the career of the artist, Stephen Wiltshire, who was also autistic. His gift is that he can draw the most complex landscapes and places from memory, having see them only once. I have no doubt that one day, in the right season, Albert will also discover his special gifts, and who knows where they might take him.
Hi Aimee
I have sat on this response for the last two days thinking through how I could respond without being too twee or too dismissive.
Firstly I want to say that I do not know exactly what you feel because I am not you.
What I can say is that I have spent the better portion of my working life supporting children like your son. I want you to know they have been my biggest teachers in this game called life.
They communicate ever so clearly. I think it’s that this crazy world is all too busy rushing from thing to thing that we miss the point more times than not.
I also want you to know how gracious and kind humanity can be in spite of the chaos unfolding before us regularly. I want you to know your little boy will be held and valued and dearly loved in spite of everything.
I don’t want to ignore your very real fears and concerns but working with people like your darling boy has been one of God’s richest blessing in my little life.
I turned 58 on 24 July and found it interesting to note that your story came up for me on my birthday. A gentle reminder of the gorgeous beauty I receive and the delightfully interesting people who are around me in my work.
Thank you for being real. Thank you for sharing and thank you for reminding me of our blessings. This includes your son. He is an angel disguised in human form. Of that I am sure.
Tiffany 🧡