When you are the parent of a child with autism, it easy to feel alone. It is easy to feel like there is no one else who is truly on your side, no one else as dedicated to fighting your child’s corner. Through no fault of their own, friends and relatives do not fully appreciate the effort that goes into simple things – why you cannot go somewhere alone, why it is almost impossible to leave your child with someone else, the never-ending balancing act that goes into keeping them safe and happy.
Even when talking to professionals, it can often seem like you are hitting your head against a brick wall. You have to explain. A lot. You must start from the beginning, recount every detail of your journey, every strength and weakness your child has, every daily struggle. If you want to be heard, if you want the support you know your child needs and deserves, you must know everything – inside out.
And you have to keep repeating it until someone listens.
So, when you meet someone who gets it, someone who seems to understand, it is a feeling that is hard to describe.
In September, my son will go to school. His needs are complex. Gross motor skills, fine motor skills social interaction, self-care, language processing, sensory processing – they do not match the skills of the other 4-year-olds who will begin this journey with him. I do not know if it will be the right place for him, but we have little choice but to try.
This morning, in a bright office, with the sounds of children’s muffled laughter spilling through the walls, I told our story to my son’s future head teacher. I started at the beginning, recounted every detail, described every strength, every weakness, painstakingly, lovingly. I spoke my boy into life – his triumphs, his disasters. I laid it all bare, told a stranger why my son will need her help. I told her all the things that make my little boy different to other little boys – difficult, every time, no matter how many times I tell it – and I waited to see what she would say –
My son will be completely supported in his transition to primary school. She will begin visits to his nursery at once, start advertising for the right person to support him. She will liaise with the county and his nursery to make sure all the evidence is collected and submitted for the EHCP process before he begins school. She will arrange for extra sessions, throughout the Summer term, to ensure that he gets to know the new environment well before September.
She will make sure his current key worker accompanies him on as many settling sessions as possible and request that she spend time in his class when he begins. She will find funding for this if she needs to, to make sure that it happens. If the EHCP is not in place, if the funding is not yet there when he begins in September, they will find a way to make sure he is supported. They will do everything they can to make sure that my little boy is safe, that my little boy is secure, that my little boy gets the support he obviously needs and if there is anything else we would ask of her, any other support that she can provide, we must ask her.
I listened. I thought about what that means for him, for us.
And then, I burst into tears.
To read more about our autism journey you might like:
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