Mumsnet Campaign: ‘This is My Child’

The Mumsnet #ThisIsMyChild campaign that’s been running since the summer, is still going strong. The idea of this campaign is to encourage support for parents who have children with special needs and disabilities rather than, for example, judging the mother whose child is having a meltdown, or stare openly at the child in a wheelchair without considering how you might be making them feel.

I was once that meltdown mother, feeling the shame of judgmental glances from the “in-crowd” mums. I am blessed with two children with special needs/disabilities. Son1, who will be 16 next week and Son2, 14, both have Asperger’s syndrome and are each completely different from the other.

This last week has brought two milestones: Son1 has been offered a place at Sixth Form college to study for A-levels while Son2 has finally learned to tie his own shoelaces.

For us, these are both remarkable events.

When Son1 was six he was diagnosed with ADHD – a diagnosis we soon realised was insufficient. He soon added Asperger’s syndrome to his list of ‘labels’ as well.

I would see the disapproving expression on the faces of other mothers as Son1 rushed out of school, easily visible by his bright blond hair and by the way he barrelled into their  ‘beige’ children. The same kids who doubtless reported to them how Son1 had sulked under the table all morning instead of sitting nicely in circle time. He was, in others’ eyes, just a naughty boy and therefore I must be “A Bad Mother”.

From the first term of Reception year, he had a ‘Behavioural Chart’ that Miss would flourish at me in front of the other parents at the end of the school day. Son1 found it difficult to do what everybody else wanted to do; he had to be first in the queue, he didn’t like to share or turn take, everything he did was at top speed, he was easily distracted and could not sit still.

At the same time, he was incredibly clever and had a vocabulary that astounded his teachers. This was obviously also down to my bad mothering.

When I suggested he may have ADHD they obviously thought I was just trying to find an excuse by medicalising his behaviour as some kind of syndrome.

It’s true of course, I couldn’t accept that he was ‘just a naughty boy’ and I could see that he had many sensory issues and problems surrounding control, both self-control and needing to be in control of his environment.  Both of these are difficult for children on the autistic spectrum.

When he was finally diagnosed, the teachers still seemed to believe that I somehow convinced a doctor to make up the diagnosis. The truth was, they just didn’t understand the many variations of autism; after all, it ‘s called a ‘spectrum’ for a reason.

I wonder what those teachers would think of him today?  For the last seven years he’s had a statement of SEN – something I was told I would never get for him – and he has attended a brilliant specialist school for boys who learn differently to the mainstream.

It took a while, but now when his teachers who have known him since then speak to me, it’s with huge smiles at how far he has come. That angry, nine year old boy is now a thoughtful young man, about to sit his GCSEs. He has decided not to stay in the cosy surrounds of the school sixth form, but to venture to the local sixth-form college, where instead of being among 400 boys aged 8 to 18, he will be just one of 2000 young men and women, all studying for further education qualifications. I am terrified, but he is so far, quite relaxed about it. The formal offer letter arrived yesterday and he read and re-read it, a smile on his face.

His difficulties are not all behind him but he is aware of them and the self-control previously missing is now much in evidence. He still has struggles with empathy, can be quick to anger when his ‘buttons’ are pushed, usually by his brother, but sometimes it is hard to tell whether it’s Asperger’s or just the usual teenager-ness.

His brother would say that the button-pushing is only getting back at him for all the hitting and tormenting that Son1 did to to him when they were little, including inadvertently sparking Son2’s Reflex Anoxic Seizures.

Son2 has a very long memory and his autism means a wrong is a wrong, no matter how long ago it happened.

For a long time, Son2 couldn’t write legibly. His previous mainstream school dumped him in their remedial English class, even though his reading was stellar. What would they say now if they knew his writing difficulties had a physical, not a mental cause? He cannot hold a pen properly because he has lax joints and has now been diagnosed with Ehlers-Danlos syndrome. Another child told me once they had to drag him to that class, because he knew he shouldn’t be there.

Son2 has also been the same school for the last seven years. His EDS exacerbates the symptoms of anxiety that come along with Asperger’s and he is known to switch off and refuse to engage when he’s overwhelmed, leading to pointed stares and tuts from others.

For years, we’ve been trying to teach Son2 to tie shoelaces but eventually gave up when we discovered elastic laces.  Last week my husband tried again, offering an incentive. After three tries, he got the finally got hang of it was rewarded with an expensive Warhammer Codex.

For most parents, a child learning to tie his shoelaces is a minor advance. For us, it’s a huge step forward. It’s also a relief that he won’t be using Velcro straps for the rest of his life.

Achievements large or small are always celebrated in our family with gratitude that we found the right school at the right time and it proves just how important it is for young people on the spectrum to receive both a social as well as an academic education.

So, #TheseAreMyChildren, but there’re many others like them who have not been so fortunate for one reason or another. It’s part of the reason I write Special Needs Jungle, to help pass information on to other parents so they can gather the knowledge they need to help and them and their children find the right way forward too.

This blog post has been very kindly written for Early Learning HQ by Tania Tirraoro (below), author of the very popular blog Special Needs Jungle and a regular contributor to Mumsnet.