Parent Carer Lived Experience: Fostering, SEN, and the Learning Curve of a Lifetime

When hubby and I first got together I was a 21-year-old who’s experience of disability was having an uncle who was severely physically and mentally impaired. My senior school was mainstream, and we never really knew of SEN children there. We knew there was a block where the children in ‘bottom set’ did their work, and there was a special school round the corner. Our language around SEN was course and outdated and I had no idea how hard education can be for some children.

Hubby's children were mainstream – though we later discovered his son had ADHD. They didn’t live with us and my only experience of the struggles he might have had come in the form of frantic phone calls from hubby’s ex-wife which were not always received well by the immature me.

We went on to have three children together – all mainstream. Our daughter number 2 struggled a little more at school but the head teacher at the time put it down to ‘middle child syndrome’! I read a lot and suspected she might be autistic, but I knew very little back then and when the paediatrician told me ‘she has some traits but nothing to worry about’, I took him at his word. She was never diagnosed but is currently looking to get diagnosed as an adult to validate herself for the years she felt she was ‘different’.

I am a prolific reader though. Even when we first discovered hubby’s eldest son had ADHD I remember reading every news article and very unhelpfully handing it to his ex. (Of course I thought I was being really useful and she was being ungrateful when she told me ‘Thank you for all your information but it’s help I need!).

I carried on reading and reading throughout the years on everything and anything regarding children, child development and learning. I considered teaching so went to become a Teaching assistant and Learning support assistant where I got my first real glimpse of SEN children and the struggles in school.

We were still woefully unprepared for our life when we decided we would open our home to children who could no longer live with birth families. We had always wanted to foster and did indeed do some very short-term fostering when I was expecting our eldest. Of course, no one would recommend a new foster carer taking on any children when pregnant for the first time now! That was very short lived, and we decided to wait before fostering again.

We let our birth family grow and I became a childminder. I came across so many SEN children who I cared for as a child minder, but that is infinitely more different to living with a child with SEN. I was judgy at times with parents, couldn’t understand why they couldn’t make time to listen to their child read at night, why they couldn’t get to school on time, why they couldn’t drag their school refuser to school!

That makes me sound like a tough childminder, but I was never openly judgy, it was my internal monologue and I couldn’t understand why it was so hard for these families. I could settle the children when they were with me, so what was the problem. (I knew nothing of masking back then). Even then though, hubby and I were learning so much about neurodivergence and our 11 years of child minding finally changed how we approached these families and our understanding of their struggles. In fact, we started to be able to recognise signs of neurodivergence a mile off! We never called it that back then – we were using ADHD, aspergers and autism and never really connecting their spectrum.

Fast forward a few years. We battled to be able to foster alongside childminding as there was a view at the time that foster children could pose a risk to minded children. We fought so hard to argue that in every big school there is potentially looked after children who are not segregated from other children because they pose a risk!

So, five years ago we were approved as foster carers. With hubby’s adult children having finished uni and trades qualifications, our eldest having just started uni, our middle one having been recognised by ourselves as being ‘in her own world’ and our youngest son only 13, in mainstream and thriving.

Covid hit! Three days before national lock down we were asked to take in a family of three. We had been approved for four months so we were chomping at the bit. One bounced through our door and we instantly looked at each and verbalised ADHD! We were put in our place at a few meetings and told that trauma can present as ADHD.

Our learning curve would have been even bigger had covid not kept the children at home. During that time, we were able to get to know them and spot their learning needs. We soon recognised that trauma was involved, but with endless reading and training, also learning that this term we had never used before – neurodivergency – could also co-exist alongside trauma. Knowing the system from working in school, we knew that before any diagnosis would come in, we would be sent on a parenting course. This is when we first started to figure out how upsetting, shaming and disabling it is to be suspected of being ‘the reason’ your child might not be meeting the milestones at school! Parent shaming, lack of trust on our instincts, lack of accessible training for many parents.

We thrust ourselves into learning everything we could. We came upon ADHD wise by accident. They were running a 12-week course for parents supported by or instigated by (I forget now) Bedford Borough Parent Carer Forum. We learned so much and we were so vocal that we were even invited to join the committee at BBPCF for a short time. More importantly, we learned how difficult life could be for our children in school.

We eventually had an ADHD, an ADHD and a pathway to ASD child to learn about (Don’t get me started on how long this process is!) Our lives have been a tumble of meetings, learning curves, arguments, mental blocks and stresses ever since – in most part, because children with SEN can struggle so much and that impacts our entire house. Schools are so underfunded and under trained in SEN. We are on first name terms with so many SENCOs now and had to really dive in and learn buzz words, so we didn’t feel ill equipped to fight for these children. And fight we do! ALL THE TIME!

We learned how judgy we had been in the past and I have a lot more respect for my step children’s mum than I used to have!

Neurodivergency is making headlines, and many more people are learning and understanding about the complexities of these children. Even though we read a lot, we did so much training, we are well supported by our fostering team, we still struggle! We never had to read the SEN map before with our birth children, but becoming carers of three SEN children set us on a roller coaster we could never have understood before. Being passed from pillar to post – schools think looked after children come with a load of extra social funding to support their SEN, Local Authorities argue that schools should be putting in more funding for each child, other parents judge us in the playground as our children can lash out in fear and frustration – all takes a toll.

We are confident, literate adults with no additional needs, and we find navigating the SEN register, fighting for ECHPs, learning the lingo – all a challenge. We have had to learn a whole new language when supporting these SEN children and know that for some parents, this is an impossible task!

As foster carers we are sometimes held to a higher standard than birth parents. We have been expected to know more at times, and at other times treated not as professionals. We have been told ‘you chose this’ as if that negates any of the tough fights we have to have with schools. We cry hard for these children who are not only battling trauma, but also the difficulties they have accessing a curriculum, reasonable adjustments or the correct school. We have experienced a range from school-based anxiety, difficulties accessing the curriculum and exclusions.

A high percentage of looked after children are considered to have an SEN. Many – not all - foster carers have had little experience of dealing with SEN so there can be a huge learning curve for foster carers to overcome to be able to meet the many needs of looked after children.

And we would do it all again and again. These children deserve it.