There's a hole in the safety net

In this open and honest letter to 'the system' mum-of-three Nikki shares the challenges her family are facing in mainstream school. She also share somes tips for other families whose children are struggling with school.

Our family's story

Nikki
I’m a mum of three boys, my oldest is about to start college, my middle child is about to start year nine at secondary school, and my youngest is about to start year three at primary. My middle child was born at 30 weeks, and is a little fighter. Although incubated he didn’t need any oxygen.  At about two weeks old he had a routine brain scan where they discovered infarcts and bleeds to both sides of his brain. My husband and I were taken to the ‘quiet room’ and told our baby had a brain injury. We asked what the worst case scenario would be, and were told he could be “profoundly globally handicapped”. My head was spinning, we had no idea what the future would hold for our baby or how it would impact his brother who was two years and nine months when his baby brother was born. Only a week or so after the ‘bombshell’ he was taken to intensive care, and put on CPAP (Continuous Positive Airway Pressure) to aid his breathing. During the first few months we were in and out of hospital with him, bronchiolitis being the cause of one admission. Despite his early difficulties, he just kept battling. Being called by one doctor “a miracle baby” when he sat up unaided, then mastered walking. He was delayed in all milestones, but he did it! Whilst we are delighted at all of his achievements, and wholeheartedly encourage him, he has ended up in a huge grey area in the system, a sort of no mans land.

The letter

Hello System, I think there may be a hole in your safety net, and my son is falling through it. You see he doesn’t fit. When he was born he wasn’t aware of your tick boxes, he became his own person. A lovely person, a person who has cerebral palsy, epilepsy, high functioning autism, and some other things too.
Feeling fed up
After another tough day
He couldn’t read the criteria to qualify for a Social Worker who specialises in children with disabilities, and he didn’t know he needed learning difficulties to get an EHC Plan.  Neither did we. We truly thought that by encouraging him to achieve his full potential (that’s what parents do right?) we were giving him the best opportunities. But were we? What happens to the children that need extra help but who don’t tick all the boxes? What can they access and where do they go? Do they really just go in to the ether. I’m sad System because you are making it harder for my son than it should be. I want to be a mum, not an email writer, meeting attendee, or advocate. I want to enjoy my son, not fight for him.
Unsure where he fits in
Wondering where he fits in
My son goes to mainstream school, that’s where you’ve said he must go System. He struggles there, I mean really struggles. He has to face his differences daily. He doesn’t fit in. His school is wonderful, and the staff are working really hard to accommodate him, but it’s mainstream, and despite their best efforts to cater for him they don’t have the resources. He is now a teenager and very self-aware, but don’t worry system, he’s managing, and for you that’s good enough. He doesn’t need to excel, he doesn’t need to enjoy things. He just needs to hit a base line, and a pretty low one at that. My son has overcome bullying, judgement, and having his differences highlighted by the many visits from OT and physio, and other professionals. His school have been amazing, but he still feels different and awkward. I wonder, System, whether he would feel less awkward and different in a special needs school, where OT’s and physio’s and wheelchair services are regular visitors for the majority of pupils. We won’t know, not unless his grades slip below the rock bottom base line, and then I’ll have to decide whether my son should be told that he’s falling behind academically too.
Feeling gutted
Feeling gutted
If not fitting in at school wasn’t tough enough, System, you decreed he wasn’t disabled enough for a social worker from the disabilities team. Apparently cerebral palsy, epilepsy, hypermobility, high functioning autism and being partially sighted doesn’t tick enough boxes. He needs learning difficulties too. He does have a Child Protection Social Worker though because he’s a CIN or Child In Need. He has a Child Protection Social Worker not because he is in danger of being abused, but because he is at risk due to the fact that his needs cannot be met by you, System. His social worker is amazing and really tries hard, but this isn’t her field, and you know that. Everything we access has to be checked and double checked by my son’s social worker and her manager. Often they refer to the disabilities team for advice, they do that because my son is disabled, and not really a child that needs a Child Protection Social Worker, but he doesn’t meet your criteria for the Children with Disabilities Social Work Team. My son doesn’t fit, and he’s falling through the net and I don’t know how to catch him. From a Mum looking for answers.

10 stratergies which helped us with school

1) My son’s social worker went into school to explain the various disabilities and difficulties my son has. My son was involved and explained how he feels, this helped to reduce bullying and some of the children now really look out for my son. 2) I communicate with school, various therapists and my son’s social worker via email in order to keep a written record that I can refer back to. 3) I take notes in all meetings and emailed the meeting minutes to all attendees 4) Try to take someone you trust with you to take notes too, belt and braces! Also you can use ‘bathroom breaks’ as an excuse to compose yourself if you are getting upset or irritated, if your companion stays behind you can’t be talked about when you’re not in the room. 5) For us SENDIAS (Special Educational Needs and Disability Information, Advice and Support) has been invaluable. You can find your local service here. 6) I’ve tried to keep good relationships with school and all professionals involved with my son. 7) Setting reasonable deadlines for need to be met has reduced waiting time in seeing his needs being met. 8) I’ve involved my son in as many meetings as possible, I want my son to have input in decision making about his life. 9) Be nice. I know it’s really patronising, but getting cross, or upset just gives professionals something to focus on other than the point that you are trying to make. 10) Be firm, but don’t be inflexible. One of my favourite lines is “I’m definitely willing to try your suggestion, however if it doesn’t work, can we agree now, to use my suggestion instead please?”  Finally and most importantly read The Special Parents Handbook by Yvonne Newbold. It’s absolutely packed with tips for meetings and daily life as a special needs parent you can find out more here.
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