Alex and Henry on Mother’s Day

by Alex Wilkinson – mother of 5 year old Henry

Henry was two when he was diagnosed with autism. I took him to the doctors as he just wasn’t developing like his sisters did; he wasn’t talking, he was distant and in his own world. He would line things up, spin, flap his hands and watch the same episode of Peppa Pig over and over again.  I don’t think anything could have prepared me to learn that the doctor suspected autism.

At first it was very daunting; we knew very little about it but once we had got over the initial shock, we launched ourselves into this very fascinating world.

We settled into a world of therapists, autism courses and support groups and learnt a whole new language of abbreviations; ASD, ASC, PDA, IEP, SENCO, SALT, EHCP and PECs.

We had to rethink completely everything we knew about being parents.  We’ve learnt to use pictures and Makaton sign language to communicate with Henry.  We try to ‘be a detective’ and trace our steps to discover the cause of the current issue.

I felt like it was my whole purpose and responsibility in life to teach him to cope in this world.  With that comes enormous guilt. Guilt that I haven’t read every autism book ever written, guilt that I’m not spending every waking second doing play therapy with him and guilt that I’m not giving enough attention to my daughters.  I can’t even get their homework done without Henry disappearing and filling the toilet full of toys! Guilt that the girls can’t go to after school clubs or do normal things.  The last restaurant attempt ended up with Henry sat under the table with no shoes or socks on and holding all the forks.   Each day there seems to be a new challenge.

I find it difficult to explain it to people; every child with autism is unique and the spectrum is so broad.  Henry is five and he attends an amazing special needs school.  He doesn’t talk, but recently he has started to make noises that sound like words; however, he is very good at squealing at the top of his lungs day and night.

He will arrange all his food around his plate then take bites out of each one simultaneously. He hates wearing shoes and loves to be naked.  He’s not toilet trained yet, so the naked thing can get quite messy at times.  He understands basic instructions like ‘bath’, ‘bed’ and ’dinner’.  Anything more complex like ‘walk this way’, ‘come back’, ‘go and get your coat’ and ‘stop throwing open yoghurts behind the television!’ are completely lost.   When he can’t get his message across, he gets frustrated and distressed.  He has no sense of danger, so for his safety he must always be in his pushchair when we’re out.

It can be really hard at times.   I know every family has difficulties but when you can’t even go for a walk round the block it can become really isolating. The only people who truly understand are other autism parents; those friends have become my lifeline.

It’s also completely wonderful; every little bit of progress is huge.  When he tries a new food, when he first signed ‘more’, when he figured out how to use a scooter and when he stopped crying and shouting at the freezer. He now gives me a picture of an ice cream (a lot) instead!

I love to watch my daughters with him. Without realising it, they are like little therapists who naturally force him to interact whether he likes it or not.  They are growing up with a knowledge and experience of autism and disabilities.  In fact, I love explaining autism to children, they just readily accept it and want to help.

It’s really important to just take one day at a time. Push the guilt and tomorrow’s fears aside. We don’t know what’s around the corner, so it’s important to stay focused on today and remember that, at the end of the day, he is still also just a lovely little boy.