"A mother is neither good nor bad nor the product of illusion."- Donald Winnicott
This week I had a follow up appointment with cardiology (after some blood tests) in regard to a recent increase in blood pressure/fast heart rate. It was a long day involving lots of waiting around and a scan (echocardiogram), however no major abnormalities were found thankfully, but I do have a murmur. I was told that I needed to effectively manage my stress and have been given some medication to bring things down. What did not help as I was walking into the hospital, was a call from my son's school (he had become upset, after falling over and getting covered in mud). They asked if I could pick him up, but in the end a compromise was met by them providing him with alternate clothing.
During my appointment I told the doctor about my day, and he noted how that impacted some of the readings he was taking (ECG). I have accepted, that the tablets will help in the meantime in regard to my physical health, as I want to be as healthy as possible for myself and my son, but in regard to stress levels it is easier said than done. My husband and I do not have support from anyone nearby in regard to his family, and my family are in London. We have had to bounce off each other in regard to my son's needs, however I have found that talking can help and have recently enjoyed using Wysa for this.
Being a parent to a child with special educational needs (SEN) can definitely be a rollercoaster of emotions. One day, you might feel hopeful and empowered, while the next, you are grappling with feelings of overwhelm and inadequacy when you do not feel you have done enough (or doing enough) when you child has a difficult day (say when a meltdown happens). For many parents, it is a constant battle to endure, in regard to getting the support your child needs, as well as managing medications, appointments and therapies. With that here are my thoughts on the pressure that can come with being a SEN parent, and things I've found that have been useful along the journey.
The Emotional Impact:
• Guilt: Parents such as myself often feel guilty or beat themselves up about their child's struggles, blaming themselves for things beyond their control.
• Fear: The fear of the unknown, of what the future holds for your child, can be overwhelming, you wonder if they will be able to take care of themselves and possibly others if they chose to have a family.
• Isolation: Feeling alone on this path can be incredibly difficult, especially when others don't fully understand your experiences. You often feel ostracized by the other parents with NT (neurotypical) families, and your child stigmatised (such as being excluded from birthday parties) by their peers where they can struggle socially. Plus the ongoing issue with schools in regard to attendance and the fines that may come with that.
The Physical and Mental Strain:
• Stress: The constant stress and worry can take a toll on your physical and mental health where you can find yourself in survival mode.
• Lack of Sleep: Sleep deprivation is a common issue for parents of children with SEN, where their children may have difficulty sleeping (this has improved for us where my son was prescribed melatonin). But it's also exhausting in general keeping up with appointments and meetings you may need to have around your child's care.
Finding Support and Coping Mechanisms:
• What is available around you: There is the Max card that offers discounts to SEN parents for family days out (DLA or carers allowance can help fund these). As well as some charities that can provide some support through arranging respite time for parents, such as Barnardo's. Some charities also do workshops for parents around the complex needs of their children like the Cygnet programme for ASD. Your GP will also likely have a wellbeing advisor who can also be handy to get in touch with, the recently referred me to charity that supports carers of disable children called Contact.
• Seek professional help: Therapists can offer valuable coping strategies and support. I am no stranger to CBT and have had antidepressants before when my son was first being diagnosed and have chosen to medicate my son where I feel it is necessary for his focus.
• Practice self-care: Make time for activities that help you relax and recharge when you can. This does not have to be expensive; I tend to read, do a dance or art but need to get back into meditation as this was very calming. (Reiki has also been great when possible) I also like to laugh and find comedy can be very healing. These are my own personal helpers, but the goal is finding something that can uplift your mood.
• Celebrate small victories: Focus on the positive moments, no matter how small. I was really proud of my son learning to tie his shoe laces over the summer. He has had occupational therapy over the years to help his hand mobility.
• Try and find the glimmers: Glimmers are little bursts of happiness that pop up in your day, such as seeing a beautiful flower or eating something you really enjoy. They make you feel relaxed and positive, and can calm the nervous system after a negative experience. They are the opposite of triggers, which are internal, external, or trauma based responses to people, places, scents, sounds, objects, or even memories.
But mostly remember, you are not alone. Many parents of children with SEN are facing similar challenges, and it can also be helpful talking to parents such as these, (even if not in person) in online support groups such as those found on sites like the National Autistic society. I have also found the Special Needs Jungle incredibly helpful in regard knowing the laws that protect my son when dealing with school issues. He was put into seclusion a few years ago, which breached his human rights under the Children Act (1989) that states that any practice that prevents a child from leaving a room or building of their own free will is a restriction of liberty. It also went against SEN Code of Practice (2015), as adjustments were not made to ensure that expectations of students with disabilities are developmentally appropriate and fair. My son has ADHD as well, so confining him to a small room, and not allowing him breaks was absolutely ridiculous.
It is also important to know the laws that protect yourself also as a carer (Carers UK is great for this). My husband recently had flexi mornings approved at his workplace, which has been helpful if I've been unwell, and made my son less resistant in the morning where we would usually take public transport to school.
Anyway I'm going to try and take each step as it comes in regard to my health. I will likely keep updating this blog as things progress, hopefully for the better.
- https://www.mindbodygreen.com/articles/what-are-glimmers (How to seek more glimmers)
- https://www.mindbodygreen.com/articles/emotional-triggers (Understanding emotional triggers)
- https://contact.org.uk/help-for-families/listening-ear/ (They provide an emotional support helpline)
- https://www.wysa.com/nhs-talking-therapies (The first AI mental health app to meet NHS UK's DCB 0129 standard of clinical safety)
- https://www.psychologytoday.com/gb/blog/lifting-the-veil-trauma/202006/why-survival-mode-isnt-the-best-way-live (Survival mode)
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10449392/#:~:text=Diagnosis%2Drelated%20coping%20issues,-Twelve%20studies%20reported&text=Behavioral%20problems%20related%20to%20ASD,birth%2C%20rather%20than%20acquired%20later (Parental stress in families with SEN children case study)