Keynote exert: As a SEND parent

At the end of November I gave a keynote speech to Special Education Needs and Disabilities professionals in London.  Here I'm sharing exerts from the speech on what do we as SEND parents want? Today, I share part of the setting I gave in my speech.. being a SEND parent. I'd love your comments on what you'd share about being a parent.

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I can make a little list of things about my kids. That they have ASD, ADHD, Hypermobility, are pre-verbal etc etc. I know about them of course not because they are listed in their EHCPs or Statements but because they affect every single part of our lives.

The other day I was woken from my sleep by a light shining through the curtain.. that can’t be right..I thought.  Every mum expects a period of poor sleep, though it’s still a shock to most, as it was to me, but no one honestly expects it to last for 9 nine years.  I have one child with ASD and ADHD who has difficulty going to sleep.  I have another child with ASD who can't stay asleep. It is a lethal combination. Most nights are a strained game of musical beds, or musical sleeping bags on the floor.

As a parent of a SEND child, I wake up every day tired

I get out of bed, carry one of the sleeping children down stairs and put his hand on a spoon so he knows it's breakfast time and can wake up.  Then make my way to the kids schools in a very routine manner - Anthony in particular can be afraid of being late. If something happens on our route to the two different schools I can't change the order of things.  David can have a meltdown if the route is amended in any way. And I worry about what might happen - the day I thought it might be a non-uniform day had me in sweats as I tried to remember my calendar at home. It's difficult thought as it looks like a brainstorm gone wrong, the kids health and education appointments are changed all the time. It feels like at any moment something might send the kids into a meltdown or anxiety spiral.

As a parent of a SEND child, I am worried every day that something will go wrong

Being a parent of my children will, as for many, be the greatest accomplishment of my life (I hope) but it can be very challenging and exhausting.

In fact 90% of parents with a child with learning difficulties say they don’t get to spend enough time together. A survey of couples raising a child with ADHD (Attention Deficit Hyperactivity) found that 65% were divorced or separated or experienced marital problems. The Families and Children Study found that more SEN children live in lone parent families than couple-headed families.  Over half of families caring for a child with a disability are living in or at the margins of poverty.

After Anthony gets back from school, we have to try and do homework - he finds it difficult. It's strange to do school work at home and he finds it hard to focus as his ADHD meds have worn off. "Kill me, please, and bring me back with a brain that works properly." he said one time.   David may not have eaten all day, and he may not eat dinner either. It's stressful to see him hungry.

As a parent of a SEND child, every day is more likely to be a struggle at home

I remember taking Anthony into school for his settling in day...he was so different to the other kids.

First week he lay down on the playground for 15 minutes waiting till everyone else went into school and he refused to eat in the dining hall for a month. I’d given him school lunches because if I started a routine of packed lunches, he'd still be eating exactly the same thing for lunch every day today.  It was a worry.  In the first term he was spat at by kids in the playground until his coat was soaked through.

As a SEND parent every working day, I leave my vulnerable children in the care of an educational setting.

And of course, now I had two vulnerable children in two different schools to worry about. I’ve come to be focused on the single events like meetings like an IEP or Annual Review. Thinking to the future brings more worries about and what will happen even in two years when our eldest is ready for secondary school. At the moment there is no where in the borough for him to go. No where within the neighbouring boroughs either that fits his needs.

When your child doesn't develop according to 'the norms', their development and well being can very quickly seem to be take over your life. Your parenting adapts, your home adapts, you have enough paperwork to build extra walls in your house. And their education adapts... at least that what we all hope for.

By their very definition in the Children and Families Act 2014, Anthony and David are SEN children that “calls for special educational provision to be made for them". This provision is “additional to or different from that which would normally be provided for children or young people of the same age in a mainstream education setting."

And they are not alone. 

The number of children with Statements of SEN or EHCPs has been the same proportion of roughly 2.8% of children at school since 2009. However, as the number of children at school has increased therefore so have the number of children with SEN Statements and EHCPs to 236,805 according as of Jan 2016. This includes an additional 4,500 children with a SEN statement or EHCP since David started school just two years ago in 2014. All these kids need additional support, provisions and/or specialist settings. Put simply, there are more children needing additional provisions every year.

We were so worried about constraints on the system, budget cuts, lack of provision that we didn’t discuss David’s EHCP or placement with any other parents. We feared they could take resources from our son. We felt pitted not only against the system but also against other SEN parents and this broke one of the key support networks we could have.

In addition to the difficulty of asking for, agreeing on and getting the appropriate support for your child, this all has to be constantly monitored. Initially this feels like a way of you as a parent ensuring that the school and borough are meeting their legal obligations. But it soon obvious it’s much more than that.

It’s about working together to get the best for your child and that’s not just a tick box exercise. If only it were that easy.

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This conference was run by Optimus Education