With thanks to our member, Charlotte Holden for this article.
If you’ve ever been to Alton Towers and experienced the most terrifying but exhilarating rides there, you’ll have some idea what living the life of a SEN parent or carer is like. The lows can be exhausting, isolating, soul destroying but the highs can take you to a place you never knew existed, heart swelling and soul restoring where you find yourself smiling over something seemingly small but in your world, so powerfully significant.
This article comes from my own experience of SEN parenting to offer learnings and therapeutic tools we can use to re-regulate ourselves. With Carers Week (9-15 June) in mind, my aim is to bring a focus onto SEN parents whose emotional health is so often overlooked.
Definitions
SEN - Special Educational Needs
YP - Young People
ASD - Autistic Spectrum Disorder
Personal Background
I am a qualified counsellor and more importantly, mum to two incredible sons. Miles aged 16 comes with an impressive diagnostic CV including ASD, Syngap1 Syndrome and epilepsy to name just the headliners on his medical reports. Miles was diagnosed when he was 3 years old with ASD but as genetic testing became more advanced, the results of a Developmental Delay study we had entered 7 years previously kicked up the result that he had a rare genetic condition called Syngap1 Syndrome in 2018.
As a family starting out back in 2011 with our first diagnosis, there was no social media, no connections and limited knowledge. It was a very small and lonely place to be. Today is the opposite, an overwhelming amount of information, advice and guidance – positive in many ways but equally, often difficult to navigate when trying to decide which advice to follow. The biggest positive is the ability to connect with others, meaning SEN families and carers know they are not alone, even if at times they might feel it. Local initiatives, often set up by parents link other SEN parents or carers such as Facebook group ‘Walk with SEN’, welcoming SEN mums to connect over a walk around Ascot Racecourse every Thursday at 11am. The value in sharing struggles and emotional difficulties is possibly some of the best therapeutic care parents and carers can get.
"The power of knowledge in other SEN parent and carers is often the best navigation through this world."
The Complex World of Special Needs
The special needs world is a complex labyrinth of information with many tight corners and even more dead ends. The power of knowledge in other SEN parents and carers is often the best navigation through this world. From finding an appropriate educational provision, to understanding the post 16 minefield, speak and connect to those who have trodden the uneven path before you, it removes some of the overwhelm and can be very reassuring that you are heading in the right direction.
Like many others, throughout our own journey we tried all we could to make sure we left no stone unturned in getting Miles the help he needs. From ASD coaches, dieticians, a long list of supplements, diet changes, medical investigations including lumbar puncture and brain scans, it’s been a relentless search. A lot is out of our control, so what can we do to try to keep our heads above water and be kind to ourselves?
Caring is a full time job in itself, non-stop and exhausting with no days off to recuperate and a future that can seem uncertain and worrying. We have no choice but to adapt to our new reality over time and in doing so, we need to learn to acknowledge our feelings. So when you feel that little pang of grief when friends’ children grow into the next stages of life that your child may not, allow yourself to feel it. And when you’re angry at your lack of freedom, constrained by responsibility, feel it. Or when you feel sad that the future you pictured for yourself isn’t the one you’re seeing now, feel it. You’re not doing a disservice to your child or YP to feel real feelings, it’s all part of the processing journey.
A Tricky Terrain to Navigate
There is frequent publicity about the lack of funding in the SEN system and the alarmingly sharp increase in SEN diagnoses. But little about its impact on families, some of whom have increasingly fragile emotional health. Coming to terms with a diagnosis, fighting a desperately underfunded and insufficient system whilst navigating verbal and physical behaviours with no foreseeable break, can take parents to breaking point. The irony is that SEN parents who so desperately need a break, usually have less respite than anyone because they don’t have able or suitable childcare to accommodate their child. Equally funds for SEN families can be especially tight as finding employment that accommodates SEN parenting can be seriously difficult.
"...there remains an enormous void in the recognition, support and help for those families and carers of SEN"
In a complex and unpredictable world, it’s no surprise that those with SEN can find life overwhelming at times leading to crippling anxiety, behaviours’ and aggression. But as the information and knowledge around SEN grows, there remains an enormous void in the recognition, support and help for those families and carers of SEN who are dealing with trauma and at times physical and verbal abuse from their unregulated child/YP. This subject will be explored further in my publication to follow.
The Emotional Toll
Often SEN families and carers don’t speak of their declining emotional health, nor do they prioritise their own needs to invest in self-care or counselling for themselves. They learn quickly that compromise and adapting are the best way to keep harmony and that therefore their needs fall firmly down the priority pile. On a plane, we are always advised to put our own oxygen mask on before helping those around us, so why is it that this is not followed in the world of SEN parenting and carers, and what could be done in simple, achievable form to access that oxygen mask before emotional decline starts affecting everyday life?
Tips to Try
Although it can be very hard to think when the temperature starts to rise behaviourally, here are some suggestions to keep in mind.
Regulation
Having a dysregulated system is a dangerous place to be. Increased heart rate and panic - like an alarm bell moment for the brain and body. In a child/YP with special needs, this can be terrifying for both themselves and their family members because it can result in ‘seeing red’, meltdowns, aggression and lashing out. Trying to keep consistency, stability and predictability around that child can be challenging but it can really help to strengthen the ability to cope, regulate and diffuse the situation more quickly.
By teaching everyone in the family about regulation and introducing techniques to the SEN child/YP to recognise the feelings in their body that start before crisis point, can be beneficial. This could be colour coded emotion charts or talking through how worry and stress feel physically throughout the body. Some may want one word like ‘space’, or ‘walk’ or a visual that they carry, which lets others know what they need in that moment without having to explain.
Remembering to deep and slow breathe is simple but so important - slowing your own nervous system down as much as you can in order to manage the situation as calmly as you can. Deep, slow breathing can take practice so incorporate this into your daily routine – breathe in for the count of 5, hold for 5 and out for 5.
Plan
We feed off each others’ regulation and therefore a dysregulated parent can be lethal to a dysregulated child. Have an action plan before things become dysregulated. This is an area you have control of – what role everyone plays when you sense things becoming difficult. It might change but have something pre discussed. It might be that your younger children leave the room and go to their safe spaces, or that someone knows to take the lead to help the dysregulated person, one voice being easier to compute than two.
Affirmation
As a parent to a SEN child or YP, we can often feel guilt, worry or experience feelings of hopelessness. Negative thoughts such as ‘am I doing enough, is there more I can be doing?’ are common. We can all have a negative voice in our heads, but being aware of those thoughts and combating them by a positive affirmation will help ensure that negativity doesn’t become dominant.
So if after a meltdown situation you find yourself thinking, ‘this is useless, I am losing hope’ you can write that down and alongside it write something positive like ‘I’m doing all I can and am doing a great job’. Remind yourself of all the good you are doing, because without doubt, you will be doing more than you realise. Our thoughts impact our feelings which can influence our behaviour so if we can reframe these thoughts, this can lead to a surprisingly different outcome and can be the difference between sinking low emotionally or staying afloat.
Connection
So often I have sat in a well-meaning specialist or professional’s room discussing my son when all that is going through my mind is ‘you don’t have a clue about us’. What brings comfort and understanding is connecting with people who have lived it themselves. Issues may differ but the feeling of being heard and understood is a very important one. Local support groups can be a good way to connect with other SEN parents and find your new tribe. Setting up WhatsApp groups specifically with fellow SEN parent friends to offload or celebrate the wins, can eliminate the feelings of loneliness and isolation.
Equally SEN parent groups on social media can be good places to learn and ask questions. The SEN information world is vast, disparate and confusing so knowledge from SEN parents who have been through the system themselves can be the emotional hug we need on difficult days. SEN parents are a rare breed; tenacious, determined and inspiring - learn from that. Knowing that there many families feeling the same as you can give you the strength you’re looking for. The future may not always feel bright but with a calmer mind and some self recognition, we can peek behind those clouds and find the sun again. You will often find a few other faces there doing exactly the same thing.
