parents' experience
The need to be heard
As a disabled parent, I live with the feeling that I need to prove myself capable.
A mother who is living in the UK, talks about the challenges of being a disabled parent, and the need to be heard and supported.
My children’s school has introduced a parent support worker, who is available two days a week to chat and support parents. Unfortunately, she doesn’t seem to have much disability awareness, or if she does, she wasn’t applying it to me. Perhaps I didn’t look disabled enough. I cycle alongside my children to school and back. I wasn’t using my walking cane. Although I can’t see to drive, my glasses don’t show the level of my sight impairment and I don’t wear a hearing aid, yet, so my hearing impairment isn’t obvious either.
I was looking forward to chatting with a supportive person who understood the challenges and exhaustion of parenting. My health hasn’t been great lately. In two months, I’ve been in hospital twice, had other treatment, and endured communication mix-ups with the hospital and my GP, which delayed my treatment.
All this, and my elderly dad in hospital in another country, has left me a bit down and rather tired. I could have done with the support of someone who knew about available services, understood parenting and didn’t respond with unhelpful retorts. It would have been helpful if she had invited me to sit, had really listened to what I was saying, responded to my feelings and made suggestions.
Instead, what happened was that a friend introduced me to this ‘parent support worker’ and rushed off. I was left standing, saying hello to this woman (who never did tell me her name, or if she did I didn’t hear it). She explained she was there to chat and support parents, “in any way she could”. As an opener, she stated, “you have children at this school.” I admitted to having twins and finding it exhausting. She asked their age, and I told her. “Oh, that’s such a lovely age,” she replied. “Yes,” I said hesitantly, and added, “but exhausting.”
“There’s so much you can do with them at that age,” she said.
“Yes,” I said hesitantly, again. “It’s just so difficult, I’m exhausted all the time and just can’t find the time or energy to do things with them.”
“Well, that’s the same for all parents, isn’t it?” she asked.
Oh dear, I thought, am I moaning?
I was too embarrassed to continue and made an excuse to leave. She nodded and added, “I’m here Mondays and Tuesdays, if you’d like to chat.” I’d tried to chat, thank you, and you weren’t listening, I thought to myself.
She could have offered me a cup of tea and suggested, “Why not take five minutes before you go?” I might have made time. She could have responded to my repeated comments that I was exhausted. Perhaps she could have given me some time to express my frustrations with myself, helped me to look at what I was doing, what needed doing, what I’d really like to be doing, and if there was any way to find a balance. She’s supposed to be the parent support person. All these responses would have helped any parent, not just a disabled parent. Instead of feeling supported, I left thinking about what we do as disabled parents when our energy is less than our friends and our time is diminished because of ‘disabled living’: hospital appointments, waiting time for appointments, travel time for appointments, treatment time, recovery time, additional time used by our impairment. For me this includes struggling up or down stairs or considering different travel routes to avoid stairs and hills, not hearing correctly and misunderstanding information, and not seeing well so having to allow extra time for new journeys and struggling to see small print notices. It’s doing with difficulty what many of my friends do with little thought.
I gave a dinner party on Saturday and needed Sunday in bed to recover but the children wanted to go to a fair and there were many chores to be done. So, I didn’t rest and my family reaped the consequences. To put it mildly, I was a bit of a grump that day. I did encourage my husband to take them to the fair. I told them I was tired and too grumpy to go. They went and I did chores. They returned home for supper which I’d prepared. My son was full of excited tales of what they’d done and added, “You should have come, mom.” Oh, the guilt!
Keeping connected
So what do we do as disabled parents to keep guilt, frustration and tears at bay, when our energy level is less than usual, when we’re pushing ourselves beyond what we think is our own endurance, and we can’t pace ourselves because parenting demands more? What do we do to avoid screaming at our children when all we feel like doing is screaming and screaming, and crying and crying?
This morning, I had a cup of tea with a friend before she rushed to her other commitments. We chatted about the weekend, life changes (she’s moving, my dad’s in hospital) and shared some of our worries about our children. I felt better for it. Keeping connected with friends, meeting for cups of tea, dropping a card to keep in touch, sending off an email, is pleasant. That’s something.
Now it’s later in the day. My body is tired and the pain is getting fierce.
I avoid painkillers because they have side-effects. Soon I’ll be picking up the kids from school; they’ll be tired and snappy. I just don’t know how I’ll get through the rest of the day. I’m already tired and the pain is draining me more but there’s supper, giving the kids attention, helping them each with homework, reading bedtime stories, getting them to bed, the clean-up after supper, preparing lunches for the next day, and so on before I fall into bed with pain that will keep me awake. This is all still ahead of me. My husband is helpful but today is his evening out and I don’t want him having to do more because I am so unable.
I sometimes keep a journal, writing about dreams and what I’m thinking, feeling or experiencing, but that doesn’t particularly help me feel I’ve achieved much and it takes time away from the chores I need to do.
Making lists, like many self-help books preach, doesn’t make much difference to me. I can make the lists, but run out of energy to follow through on what I’ve written. I have interests in growing flowers, making felt tapestries, designing collages to use as my own greeting cards, and baking cakes and biscuits. I want to be patient and sit by the children to admire each of the creations they’ve done and hear what was important and what was difficult that day. I’d like to join them at fairs or in playgrounds during the weekends.
Asking for help
The school support worker can’t give me more time or energy, but I would have hoped she might have known about practical support services or benefits which might help make my life simpler. It’s a challenge to ask for help. As a disabled parent, I live with the feeling that I need to prove myself capable. Yet, my friends who are parents and don’t consider themselves disabled, also tell me it’s difficult to ask for help. It may be difficult to ask for help, but as a disabled mum I don’t think our challenges and tiredness are ‘the same for all parents’.