Because a disabled child is a disabled family…

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Firstly, I want to stress that I am blessed. But secondly I also want to say that I still struggle.

I struggle with everyday things like taking my children out, buying food when we need it, cooking a meal, juggling hospital appointments with picking up children from school and nursery, dealing with the piles of paperwork and phone calls that have to be made whist functioning on just a few hours sleep, and trying to give both my children the time and attention they need.

My children are both disabled and therefore my entire family is disabled. That may seem a strange thing to say so let me explain what I mean.

This week my children have had some time off again for a holiday weekend. Like parents around the world I want to spend time with my children and enjoy them while they are young. The weather was not in our favour one afternoon so I thought I would do some basic baking with them. They are both 5. One is at school and the other nursery. How hard can it possibly be to make some chocolate crispy cakes?

Nothing is easy when you have a disabled child. My daughter was super excited about baking. My son could see it was something to do with food when the cereal packet came out the cupboard but that was all he understood. I explained the process to them using photographs (google is my friend) and we filled a mixing bowl with some cereal. And then everything went rather crazy after that! Because his sister had poured cereal into a mixing bowl and not a cereal bowl; because she wasn’t sitting at the table to eat breakfast like he expected from seeing the cereal out; because he had no idea what we were doing. So he lashed out. He screamed, bit himself, banged his head on the floor and threw everything about he could get his hands on. What should have been an enjoyable family activity was now becoming yet another casualty of my sons disability. Once again his disability was spilling into the entire family. My daughter could not continue baking, I could no longer give her attention or help and my son was seriously struggling. In the end Naomi made the quickest crispy cakes ever and Isaac sat and ate a bowl of cereal with some chocolate drops in. I made the mistake of trying to drop some melted chocolate in for him. Never again! The photo shows a smiling girl with a cake. But you just don’t know what else went on that day just to achieve that. One disabled child not coping and the entire family struggles.

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Then there was a 9am appointment for one of the children. That is quite common for us. Appointments in general are so common it is rare to have a day without one. But certain times make negotiating the logistics of family life a real challenge. How do you get one to an appointment and back to school 13 miles away and the other to nursery a mile in the opposite direction at the same time? Any family having to juggle hospital, clinic and therapy appointments with other siblings, work commitments and family life knows this dilemma. The disability of one child has a huge knock on effect on the others children and the parents. So often parents of disabled children are unable to continue working because the level of commitment needed to attend these things impacts on working life so much. A disabled child becomes a disabled family.

Then there’s the places you just can’t go to because your child is disabled. Yes more and more places are wheelchair accessible but that doesn’t make them autism accessible, or suitable to take an ill child or a child prone to seizures or public outbursts. Or even make them safe for a child with developmental delays or the ability to escape within seconds. As my children grow the list of places I can take them both to gets smaller. Holidays make that worse as everywhere is busy, noisy and unpredictable. Taking them to the local grocery store just to pick up basics takes military planning, praying the one (yes you read that right just one) disabled trolley is available, the music isn’t too loud, the layout has not been changed and the checkouts are not too long. I can’t just tell my children to follow me, or hold their hands or ask them to help. Picking up a pint of milk is as hard as an army assault course when 9 months pregnant! It is exhausting. One disabled child is all it takes for an entire family to be affected.

Emotionally disability affects everyone too. Parents worrying about test results, operations, high temperatures, infections, the next therapy sessions, the fight for the right services, the concerns about the future. Brothers and sisters torn between wanting time with their parents to support them whilst realising that far more attention has to be on their sibling. Children often becoming young carers long before they should have any real responsibility. Young ears hearing things that no child should have to hear simply because there was no child care to go to and so once again they had to ‘tag along’. Children seeing adults cry and not knowing how to cope with this weight. Brothers and sisters coping with their toys and valued possessions being destroyed by a sibling who never seems to get told off, or who doesn’t seem to care. Children afraid to tell their parents they are being bullied because they don’t want to add to the already heavy burden that their parents are coping with, or worried about asking for money for a school trip because they know money is tight, or even struggling with feelings of resentment towards all the attention the disabled sibling seems to get. That balance is often impossible for parents of disabled children to get right. Whilst one child might be registered disabled, emotionally everyone in the family is disabled too.

One child wakes up screaming and often the whole family gets little sleep. One child is sick at the dinner table or throws the meal across the room and no-one gets to enjoy a meal. One child refuses to go to school or wear the uniform, every child is late as a result. It is a ripple effect.

We need to support disabled children. We need to continue to spread awareness of disability in all it’s forms and continue to invest in services, therapies and medical equipment. But we also need to remember the parents and the brothers and sisters too who live disability on a daily basis. They might look fine but remember…a disabled child is in fact a disabled family. And they ALL need our prayers and support. Thank you!

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11 thoughts on “Because a disabled child is a disabled family…

  1. This is amazing… So eye-opening and quite emotionally charged. Thank you so much for writing and sharing this; I really can hear your pain and I salute and admire your courage and expression of vulnerability. I feel exhausted just reading about it. What can be done to better support mums and families like yours? What can I do to better support families like yours?

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    • Thank you Mona. The fact you want to help families like mine says so much already. It shows you care and that means so much to me. There are a number of things people can do, most of which cost very little. Sparing time to do something with a sibling of a disabled child can bring joy to the whole family. Texting a family and asking if you can pick up groceries for them, or popping round to see them for a coffee and chat. Dropping an email to say you are thinking of them, being there to listen, spending half an hour cleaning for them and praying for them all. Knowing people care is what caries me thorough some days. Thank you for your lovely comments. God bless you for showing such love. X

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  2. Once again, out of the depths of your heart & challenging daily experience, you spoke SO eloquently. In word pictures, you bring to life for those of us who would otherwise be blatantly ignorant & unaware, & perhaps insensitive & uncaring as well, what life is like for a ‘disabled family.’

    Your words always definitely have an effect on this heart, & I am sure Many others, which can only have one result — more awareness, compassion, sensitivity & availability to bless you & your family & many other ‘disabled families’ wherever we live.

    May the grace of our Lord continue to revive, renew, guide, & encourage you today & every day.

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  3. Oh Miriam you are so gifted in the frank and honest way you write. Things you share are so often very personal and yet at the same time there are many parents, families and carers that I’m sure identify with what you say. I pray continually that others are encouraged and challenged in your writings.

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  4. And as you say Miriam this sums up why I have not ‘worked’ in about 14 years which then makes you feel guilty for not working and so the pressures increase. 😦

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    • Both of you ARE ‘Working’ ~~ Much harder than most of us who have secular jobs out of the home!!!
      Our enemy may try to put a guilt-trip on you through thoughts planted in your mind; & through some people’s ignorant & thoughtless words. BUT, satan is a bully & a liar!!!

      Stand Tall, ladies ~~ you are Champions ~~ in God’s eyes & in many people’s eyes, too!!

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  5. Reading this reminds me of how so much more we disabled families do well beyond the neuro typical family. Because it’s daily and we just have to get on with it.
    Because no matter how hard it can get we could never walk away or ever stop fighting in our family’s corner despite the enormous amount of extra work we do. There’s always another battle or hurdle to contend with, guilt about never quite being able to stretch far enough to meet everyone’s needs and expectations and add society’s lack of understanding, comprehension and judgementalism to that list (tip of the iceberg!) Oh! And not to mention it’s usually on top of yet another broken night’s sleep. It wouldn’t hurt for Jo public to walk a mile in our shoes. Maybe then there would be more insight, respect and downright awe at the very specialist roles we hold.

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