SEND Survival Guide

Life's a minefield of moments where we feel we’re winning or failing at parenthood. SEND expert, Natalie, explains and sets out her survival guide

Natalie is a parent of a child with special educational needs. She shares her personal experiences and offers 10 tips for parents based on her learnings…

My Home Life

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 described as some kind of out-of-this-world meltdown because 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...

Wham bam!

My eldest can no longer cope with the noise, the stimuli and all the rushing around.

He generally reacts in one of two ways: he either shuts down, stops communicating and freezes, or he goes into meltdown, runs around, or screams uncontrollably.

There’s usually a moment of calm after the storm where 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 carer. 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 needed 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 released a whole load of emotions I hadn't expected: grief for the child I felt I was losing and the plans we would never complete, and fear of the life we would lead. 

Over time, I realised that while our plans and experiences might change, we hadn't - our little boy was still the same little boy.

There is beautiful poem called, 'Welcome to Holland', that I have on my fridge to remind me of the beautiful and wonderfully unique journey we are on. 

Of course, there are still moments where I have found myself in a blind panic. Parent guilt starts to set in and I have to take a deep breath and remember that 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 that most parents will experience at some point. It’s important in those times to remember that you are not failing, you’re adapting!

It’s vital to prioritise what's most important. And I can tell you, what’s most important is your wellbeing - you will be no good to your family or your children if you’re burnt out…

 

My SEND Parent’s Survival Guide

  1. Take 10 - 20 mins to yourself every day for a walk, or to flick through a trashy magazine, spend time in the workshop, read a few chapters of a book, or whatever calms you down and is just for you. To be the best version of you, you must look after you first. 
  2. 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? Be adaptable and accept it's OK to leave early if it is too much for your child. 
  3. 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.
  4. 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. 
  5. Prepare meals in advance to make your life easier. Each day offers challenges and you need fuel to be able to offer the high levels of care needed, not to mention stay focussed in those endless meetings.
  6. Seek & accept support. People often want to help but it can feel embarrassing to accept it. Asking for, or accepting help isn’t a reflection on your ability. It’s important to build a community of people that you can call on at times of need. 
  7. Research. Equip yourself with knowledge of your child's condition. Read the latest research and pioneering developments. Become your child's defender and voice.
  8. Keep friendships going. Try 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 message.
  9. Explain to your work place the pressure on your family, good employers will make adaptions to support you.
  10. Forgive yourself - you will make mistakes and that's ok.

 

Relax, you’ve got this!

 

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/