Special needs parents: we all need support (even you)
I want to share a story with you today. A story of a woman who thought she had it all together. Who thought she could do everything, without any support.
This woman thought she had to do everything on her own. She avoided asking for any sort of help as she thought that would place an unfair burden on others.
In her mind, it was her decision to have a family so it should be up to her to manage that family and all the responsibilities that flow from that – whatever they may be.
She would never admit it out loud, but she was also intensely afraid of receiving a negative response if she did ask for help and ended up being rebuffed.
So she squared her shoulders and kept going, in the belief that if she just kept busy, she would somehow manage to get to everything. Somehow.
This woman would see off her husband early each morning and then deal with getting her kids to school on her own. With two of her three kids on the autism spectrum, this was not always an easy task.
Each morning she would deal with school refusal, resistance to change, a lack of organisational ability, no drive to learn new skills or any motivation to help themselves.
She found herself picking up the slack and doing everything for her kids, each and every morning, as she just did not have the time or energy to fight this resistance.
After finally getting herself and everyone else ready, she would find herself in intense negotiations to get her kids into the schoolyard. Sometimes this was achieved surprisingly easily. Most other days, tears were shed on both sides.
Once she was back in the solitude of her car, this woman would use the 30 minute commute to her workplace to try to shed the guilt and the emotions of the morning. She would take deep breaths and do her best to transition into work mode, all the while silently pleading with her phone to stay silent for the rest of her workday.
She knew she had lots to do – she really didn’t have time today to deal with an issue with her children at school.
As expected, she would be besieged the moment she arrived at the office – there was no time to decompress or prepare. She was a manager and a leader, after all.
She had 5 solid hours in front of her to squeeze in as much work as possible, in between dealing with staff, obligatory meetings and conference calls with stakeholders.
The 5 hours would literally fly. There were no morning tea or lunch breaks – no time to even breathe, in the attempt to complete a near full-time load in part-time hours.
Each afternoon, some of her colleagues would continue to be surprised when she prepared to leave the office at 2.30pm. Even though she was part-time and her approved part-time hours were 9.30 to 2.30 each and every day.
After another gentle reminder of this, they would congratulate her on her “early mark” and wish they could be in her shoes.
She would laugh it off and walk out of the building, wearing a tight smile to hide her exhaustion, exasperation and anguish.
No-one would ever want to be in her shoes.
Back in the car for the 30 minute commute back to school, she would again try to breathe deeply and shake off the feeling of guilt. Guilt that she left work early, with so much left to do. Guilt that she could not give her all to work. Guilt that she could not give her all to her kids.
Guilt that she could not be everything to everyone.
Affixing a smile to her face to hide her growing physical and emotional exhaustion, she raced to school, late yet again, for pickup.
Her kids were itching to go, yearning for the safety and security of home. Secretly she yearned for this too.
But there was an OT appointment to attend, another 30 minutes away. Home had to wait a little longer.
Dealing with her kids’ tiredness and unhappiness was not easy but she managed to maintain her composure on the way there.
She even managed to take in some of what the OT said, in between remonstrating gently with her daughters, who were bored and upset at missing out on the fun their brother was having in his session.
She shared a tired smile with the receptionist while settling the account, all the while mentally sorting out what she could prepare for dinner.
After hustling her children to the car, she tried to concentrate as best she could on the three separate, yet simultaneous, conversations that they would have with her.
Luckily, these were mainly one-sided with her son talking about football statistics and her eldest daughter musing about the YouTube game tutorial she watched that morning. They would usually only require the odd “okay” response. It was manageable.
Meanwhile, her youngest girl would make an occasional comment about what she did with her friends that day, before resting her head against her carseat, as the car lulled her to sleep.
Her mother was simultaneously relieved to have one less conversation to keep up with, while also feeling that familiar tug of guilt for thinking that way at all.
Eventually they would reach home. The kids sought the solitude and security of their devices, while their mother began the evening routine of dinner, dessert, washing up, making lunches and getting clothes out for the next day.
Then it was time for the final push, to get the kids ready for bed.
If she was lucky, her kids’ resistance to routine would have melted away with the exertions of the day and she’d be able to sit down herself to have a rest before 8.30pm.
If she wasn’t lucky, she’d head up and down the stairs to make sure they got to bed and stayed in bed for a few hours more.
In between, she tried to find the energy to pay attention to her husband, who also needed her attention. Each night she promised herself that she would spend more time with him tomorrow, when she had more time and energy to spare.
That was the only way she could deal with the guilt of not being the wife, partner or lover that he needed.
Funnily enough, tomorrow always ended the same way.
If you hadn’t yet guessed, that woman was me, a few years back.
This is what I would look like at the end of a typical day
I did not think I needed support and I could not see how anyone could help me.
I truly believed that I had no right to ask help from anyone else. I really, truly thought I should do it all on my own.
However, that all changed on March 7 2014. I was attending the 6th appointment of the week with my son, after pushing myself too far for too long.
While waiting for my son’s specialist, the left side of my face and body drooped – I felt paralysed.
I could not move and I could not speak. I was helpless in front of my terrified son.
I thought I was going to die.
After being whisked to hospital for tests, and after appointments with specialists, I learned that I had suffered a physical reaction to stress.
My stubborn resistance to seeking help and opening myself up to support, had led me to this point.
My body had finally had enough and it rebelled.
It could have been a TIA (mini-stroke) but it was more likely an atypical migraine.
Whatever it was, it terrified me. It was the wake up call I needed to seek help and support.
A few months later, I accepted a redundancy from my workplace and started actively trying to look after myself.
I have since learned to delegate (that’s still a work in progress – I’m a control freak, after all).
More importantly, I have learned to ask for help and I now actively seek support from others.
I know now that EVERYONE needs support.
You may not think you need support. Like me, you may think you have everything sorted.
Or you may think that no-one can help.
You may prefer to keep your troubles to yourself. Or you may have sought support before only to have been rebuffed.
However, as parents we all need support, whether we believe we do, or not.
And with the additional demands of special needs parenting, we really do need all the help we can get.
Do not soldier on. Do not ignore the signs. Do not think you can do it all.
Take it from me – YOU CANNOT DO IT ALL WITHOUT SUPPORT.
We all need support – we just need the humility to accept that and the courage to ask for it.
How do you seek support?
This post is part of a new Parenting a Child with Special Needs blog hop where myself and other special needs bloggers will share our thoughts on a set theme each month. This month’s theme is “support.” I’d love for you to check out all the other posts linked up for this month!
Supporting Yourself and Your Child with Special Needs | Natural Beach Living
Am I Going Crazy? | Every Star is Different
Tips For Supporting A Child With Trauma History | STEAM Powered Family
Special needs parents: we all need support (even you) | My Home Truths
When Strangers are the Only Support System Around | Life Over C’s
12 Things That Special Needs Mom Needs from You | The Chaos and The Clutter
Simple Ways You Can Support Special Needs Parents | B-Inspired Mama
How (And Why) to Find an Autism-Mom Tribe Online | This Outnumbered Mama
Classroom Supports & Accommodations for Kids with Hyperlexia | And Next Comes L
| Kori at Home
| Parenting Chaos
Finding Support: From The Wind in Your Life | 3 Dinosaurs
A Letter to Parents with a Child on the Spectrum | Carrots Are Orange
Supporting a Family with High Medical Needs | Grace and Green Pastures
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