A carer for a special needs child often feels swamped and overwhelmed.
At times they are surrounded by people, others just you and your child.
In all the noise of therapists, doctors and everyone rushing around you, it’s easy to forget that you haven’t had a real personal connection for quite some time.
I recall being in the hospital for long evenings, while Matthew could do nothing but rest while his body fought the infection.
Sometimes, when the ward was quiet. I used to wander out to the nurse’s station where the nurses sat chatting away.
I’d hang out with them until shift change when they’d send me away so they could handover.
Returning home, often on my own, my husband Luke being at work, I would then be hit again with the reminder that we weren’t really friends, the staff had a job to do.
If I wanted to have deep friendships to lean on, I needed to reach out. Outside of the hospital and therapists whom I talked with for hours each day.
After I started my journey of healthy living and the start of my self-care the first thing I began to see was the treasure trove of potential friends I was surrounded by.
The hospital, the waiting rooms, the clinics filled with other families just like ours.
Chat with those people.
Find the ones who share your wicked sense of humour.
Find the ones who’s children’s conditions or severity of symptoms you most relate too.
You’d be surprised how often if you message late at night when you’re up doing cares, or just enjoying the quiet, that they are doing the same.
I’ve had some of the most meaningful conversations at those times.
Don’t forget also those dear old friends, the ones that when you get on the phone or in person, it’s as if no time had passed at all.
Your situation has changed. They may not fully understand, but they know you.
Let them be there for you. Make an effort to touch base with them.
Don’t let your mind convince you that they don’t care anymore. Or your body that you’re too tired to be bothered with them.
Unfortunately I know this is a crazy complicated relationship to talk about.
As a carer of a special needs child, many many of my friends don’t have the support of their spouse or the other parent of the child.
To them this relationship is a luxury they just don’t have.
So for those who do I say:
Be intentional. Spend time together.
Have fun, there is nothing like letting your hair down with someone who understands everything that is happening in your life!
Immediate objections I hear are:
We can’t leave the kids, or my child is just soo hands on.
This is the chance to step up, and fight for something for you and your family.
Google is your friend!
If you feel like you don’t have the skills to make it work, invest in some training.
If your spouse won’t come or do it, do it anyway.
We can’t change them, but we can change the way we see them. Sometimes that’s all we need, a change of perspective.
Remember also that being a carer of a special needs child, isn’t you’re only identity.
Before that you were probably a wife and mother too.
Definitely a woman.
Honour that woman, and the man who loves her.
It will make life easier, to have the pair of you in this together.
Many families don’t have family nearby, or near enough to be helpful.
I get that.
Some families are too busy or nervous to help.
So build your own!
You know the saying ‘It takes a village to raise a child.’
It Takes A Village
I know you don’t feel like you can trust anyone, but I promise there are people out there.
Your kind of people. You just have to find them.
Part of the ‘family’ might include a support worker who gets to know your little person nearly as much as you do.
That might sound far out, but it does happen!
Again, you have to look for them.
When my oldest was a baby I looked for a babysitter at church.
I watched the older kids for who looked out for the younger ones. Who seemed to enjoy their company.
The girl I found, ended up being golden. She even took Matthew’s needs in her stride when he came along.
When he was very little she watched him for short periods. Learning to run the pump at just 16 years old.
Later on, my sister, needing some extra work on top of her job became a live-in carer.
I know other women who pay an au pair.
Sometimes travelling international nurses are looking for a job to give them the opportunity to see new places.
Think of it this way:
In most cases, the only difference between you and the average person is the time you spend with your child.
That’s how you learned. Others, who are willing can too.
There Are Many Ways to Help
It’s not just about who can help care for your child also.
If you have typical children as well, these people can help you give them the attention you wish you could.
There are many other practical and emotional reasons to fight for your extended family, your village.
Don’t give up on them.
Don’t tell yourself you don’t deserve a break anyway, or that your child is better off.
It simply isn’t true.
All the carer studies show when the carer’s health suffers from a lack of self-care or burnout everyone suffers.
A Carer of a special needs child who looks after themselves, do a better job and there is less chance of mistakes or missing something important.
These relationships tended to happen by accident whoever is on duty that day, whoever you get referred too.
But a good relationship with them can make a massive difference in the care you get, and how well your concerns are heard.
I met a mum once who had only been in the hospital a few hours (a frequent flyer though) who had a long list of ways she had been treated with disrespect.
She followed this list with a list of things they had done wrong before they even got a foot into the room.
I watched a moment as the nurse came in and she glared, watching her every move. The nurse asked if she wanted to do whatever it was.
The mum agreed, then once the nurses back was turned she rolled her eyes at me.
This was a very stressed mum.
Who had been through the wringer, but I could clearly see how her hurt, anger and frustration was turning allies into enemies.
Gestures of support into insults.
That mum just wanted the best possible care for her child.
The nurse didn’t want to fall short of her expectations, thinking it would be better just to let mum handle it. In the experienced and efficient manner, she always does.
All this to say, the professionals in our lives are people too.
There is almost always a way to build a good relationship and have open lines of communication.
- There are exceptions to every rule of course and I am certainly not above changing providers even if it’s merely a personality or values clash that makes it difficult to be on the same page.
A Carer of A Special Needs Child Needs Help
You need support, it’s not a sign of weakness it’s not giving up.
It isn’t a reflection of your child.
It says that you are human, that as a carer of a special needs child, you have needs too.
Make sure you take care of those.
In Closing: Some Exciting News
If we haven’t met before, I am Abigail Burton.
The Mother of Matthew who passed away last year at 5 years old, of a rare and complex condition. Creator of the Facebook page: Self-care for Parents of Special Needs Families and this blog.
I wanted to share how I went from falling asleep at the wheel with my kids in the car to exercising again, and finally feeling like I had a full nights sleep.
These days I spend my time helping parents of additional needs children who know there has got to be more to life than just surviving. By sharing the steps I took, I focus on helping them flourish.
I now aspire to take other mums from feeling completely isolated to a space of having meaningful conversations inside my free community.
If this is something that appeals to you, jump on our Facebook send me a message and I’ll add to you our pre-launch list.
If this is not the journey you’re on, you probably know someone who is, so would you be so kind as to connect them with me?
Share this post, tag them on the Facebook page or connect them in my inbox.
I’d love to support them x