SEND Parenting Survival Guide

Date: 13 Jan 2021

Relax, you've got this! Life’s a minefield of moments where we feel we are winning or failing at parenthood, our SEND Early Childhood Director, Natalie explains and sets out her survival guide.


My home life

Let me take you back a few days. It’s 10.30am, I have spent the last 45 minutes trying to get my eldest son out of bed. He’s 12 years old, acts like a teenager and is diagnosed with Autism. Essentially, he has his own agenda and routine in his head and no matter what I say he won’t budge until he’s ready. I have a 10-year-old curled up in a onesie who is so engrossed in Minecraft that a bomb could drop in the room and he wouldn’t notice.

My 7-year-old is running around having what can only be describe as some kind of out-of-this-world meltdown as he can’t find the one toy he desperately needs to make his life complete. Obviously without this one toy, the world has already ended so there is no point trying to find it or so he says.

Then there is my 4-year-old, a lovely little ballerina who is kind and always well-mannered but recently seems to have discovered a new favourite phrase “dumb head”.  She takes great delight in calling her brothers this at least once every 10 minutes. Combine all this together and we have a semi-functioning household until…

Wam bam! My eldest can no longer cope with the noise, the stimuli and all the rushing round. He generally reacts in one of two ways: he shuts down stops communicating and freezes, or he goes into meltdown and runs down or screams uncontrollably. We have a moment of calm after the storm and we all just want to curl up and go to sleep but we don’t, we carry on!

SEND Parenting – The Basics

As a parent of a child with special educational needs or disability you have to be your child’s advocate and career. At times it can feel like a constant battle, meeting after meeting trying to coordinate services, requesting services or provision and having to appeal those decisions.

It’s a story I hear time and time again. For those new to the world of SEND it can be a daunting and overwhelming experience. I remember when the Educational Psychologist called me to say they thought my son need a referral for an Autism assessment. I found it so difficult to process and even when we got to diagnosis, hearing the words your child has Autism struck a chord deep inside and realised a load of emotions I hadn’t expected: grief for the child I felt I was losing, the plans we would never complete and fear of the life we would lead.

Over time, I realised we hadn’t changed; our little boy was still the same little boy. The only thing is our experiences and plans for the future might change. It’s a long journey and there is beautiful poem called ‘Going to Holland’, that I have on my fridge to remind me of the beautiful and wonderfully unique journey we are on.

Essentially, I have found myself in a blind panic at times, the parent guilt starts to set in, I take a deep breath and remember I am human, I am only one person and I’m doing my best! Feeling like you’re failing as a parent is a common feeling most parents at some point experience it. I tell myself you are not failing you are adapting! We need to prioritise what’s most important. I can tell you, it’s your wellbeing - you will be no good to your family or your children if your burnt out……

My SEND Parents Survival Guide

  • Take 10 – 20 mins to yourself everyday a quick bath, a walk in the woods, a trashy magazine, sometime in the workshop or whatever calms you down and is just for you. To be the best version of you, we have to look after ourselves.
  • Make plans but be prepared to change and adapt, our children will have good days and bad days. We do, so why can’t they? We have to be adaptable and accept it’s OK to leave early if it is too much for our child.
  • You’re a parent not a qualified psychologist or paediatrician. Any questions you have you should email a professional. Remember they want to support you to support your child.
  • Connect with other SEND families. Your local authority will be able to signpost you to groups and support networks. It’s great for families with similar experiences to relate and offer a community of support. Young carers’ groups are wonderful for sibling support.
  • Prepare meals in advance to make your life easier. Each day there’s a long journey ahead and we need to fuel our bodies to be able to offer the high levels of care needed, not to mention stay focussed in those endless meetings.
  • Seek & accept support. People often want to help but we feel too embarrassed to accept it. Build a community of people that you can call on at times of need.
  • Know your local offer this is something your Local Authority complies to signpost and support parents and professionals about services in the locality.
  • Research, equip yourself with the knowledge of your child’s condition. Latest research and pioneering developments. Become your child’s defender and voice.
  • Keep friendships going. Make an effort to reach out to one person once a week, we need a life away from our children even if it’s just a quick chat or text messages.
  • Explain to your work place the pressure on your family, good employers will make adaptions to support you.
  • Forgive yourself – you will make mistakes and that’s ok.

 

Useful websites

https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf

https://www.bbc.co.uk/bitesize/articles/zh9v382

https://www.sendiass4bcp.org/about-us.aspx

https://www.ipsea.org.uk

https://www.openforparents.org.uk/additional-needs/

https://www.gov.uk/government/publications/send-code-of-practice-0-to-25

https://councilfordisabledchildren.org.uk/help-resources/resources/guide-send-code-practice-parents