She writes of her unmistakably heartfelt love for her child and honestly portrays the difficulties of dealing with her disability. The transition of this material from blog to book, however, is somewhat less well-handled. The text seems to have been transferred verbatim, including some dead and absent links, and its practice of beginning almost every paragraph with an italicized subheading is hardly noticeable in a blog but somewhat tedious in a nearly page book. However, the book sensitively does what it sets out to do, documenting a complicated and too-little-discussed struggle in order to help others dealing with similar challenges.
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Special needs parenting | The long chain
Review Posted Online: Sept. He has two wobbly teeth! A disconcerting and painful feeling for anyone, let alone a child as unprepared as Benji. My little boy really is growing up. Now I need to go out and make it happen. Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. No-one had enough sleep. We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times it felt like I would never make it to the course I was due to go on at the weekend.
But did I ask for help? Did I call anyone to let off steam? These are things I find incredibly difficult. I knew that Benjamin was going to have significant physical disabilities, learning difficulties, developmental delays, and a limited life expectancy. I was offered an opt-out and I refused to take it. And because, for all the unborn Benjamins out there, I need to prove I can do this. I shared these feelings with some fellow parent bloggers and found that — while few were in the position of a prenatal diagnosis — many had experienced similar feelings. I fought for Benjamin like I have never fought for anything before or since.
Families with disabled children need a village, and that village needs them too. I did, after all, make it to my course this weekend. We were learning about inclusion more, much more, on this in future posts.
We learnt that the first key to inclusion is as simple as a welcome, a greeting. Many of us find it hard to greet disabled people. And such awkwardness stems, itself, from a lack of familiarity, from segregation and exclusion. I want to share this letter written by Parents for Inclusion. I wish I, and my family, had read it before Benjamin was born. Welcome to the world!
We are so glad that you have come. You have a right to be here and belong. You belong to your family, your community, your culture, your country, this world which we share together. How wonderful to have you here. The people who love you may be feeling sad and scared and will need to cry away their fears.
Like all children coming into this world you need to be loved and valued for who you are including any difficulties you may be facing. You need to be loved, touched, cuddled, smiled at, sung to, talked to, made to feel safe. As you grow up you need to have fun and laughter, play and music, friends and people who are willing to listen and learn from you. Yes, you may need to have more help and support at times possibly all the time; but remember, the most important thing for you is to be included in ordinary life and for your life — long or short — to be valued.
That is not different to any baby in this world. Yes, I deserve my beautiful boy … but everyone else deserves a part of him too. How are you? Tired of squeezing a 25kg wheelchair into a car boot through a six-inch space. Tired of soaking the backs of my legs against the front bumper of your wet and dirty car. Tired of having to leave three children under seven on their own in the house while I inch my car forward just so I can get something out of the boot. I was so excited the day we picked it up. Commuting to the hospital 30 miles away by train, running around trying to get a Car Club car when he was suddenly taken ill at school.
It was like a good omen — how often does that kind of thing happen? The car has made our lives so much easier, and safer. But they could be easier still if you were a little less petty and proprietary. Our car is nearly 5 m long — we need a big car to fit in our family and the wheelchair and all the medical equipment, feeds, plastics and pads. Our disabled bay is 6 m long. What do I need to do? I know I am the underdog here. You are a patron of the arts, supporter of local causes, general town VIP. I am a nobody, an incomer to the town, a young okay maybe not so young mother, a benefit-claimant.
But does your status entitle you to make our lives harder? Does it give you the right to ignore the Highway Code? Section 2 part says: …do not stop too close to a vehicle displaying a Blue Badge: remember, the occupant may need more room to get in or out. We absolutely love where we live, and we are blessed to have friendly, kind, thoughtful neighbours — most of whom I now call friends.
All I need is to be able to park my one car in the disabled bay designated for it, and open all the doors, so that I can get my child and his equipment safely from house to car and back again. You have three cars; a healthy daughter; two functional legs. Would it really hurt to walk an extra 15 yards to your car? I try to live by the adage that everyone is fighting a battle I know nothing about. But attitudes like yours are still a stumbling block. Please, cut us a break and give us some space. Last week we said goodbye to someone we will all — Benjamin especially — miss like crazy. At all.
And stripy legs. Could it be a raccoon?
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But that nose… an aadvark? Anyway, I love it. He literally purrs as she washes his hair; you can see his whole body relax in her presence. She drove all the way from the Borders to put Benji to bed while we bickered over our spaghetti bolognaise. I have no idea why these people do what they do. They work unsociable hours, deal with all manner of bodily fluids at least in this house , are generally ignored while the rest of us rush around getting our own selves ready for the day or eating our dinner, and are paid peanuts if they are paid at all: if we cancel with even a few moments notice, even if they are already on their way to our house, for instance if Benjamin goes into hospital suddenly, the agency carers are paid nothing.
Swallowing my pride and baring our struggles to a social worker to get our eight hours care a week was one of the best things I ever did for our family. We have all got completely used to having people in the house perhaps too used to it; I gave Amanda a bit of a shock by stripping down to my underwear to put my clothes in the washing machine the other day , that without them the evenings seem quiet, and the mornings, well the mornings are just chaos.
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Having people help with Benjamin at the critically busy times of day allows all our children to get the care and attention they deserve. It means we sometimes even get to school on time. Maybe from the hospital doorway; maybe your own front door. Maybe the very same day that precious bundle made its dramatic entry into the world; maybe one, two, or many, many days later.
And… nobody notices. Everyone is rushing past on their way to work or wherever. Heads down.
Headphones on. Grim faces. As they do every day. How can they? How can they just carry on as normal, as if nothing has happened.
When the world is so changed? When for you, everything has changed. That nothing will ever be the same again. Tired but exhilarated. The world seems shifted: clearer, fresher, better resolved. In part delirium, in part clarity of thought, both probably born of exhaustion more than anything else.
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His sats are dropping. I never believe the sats monitor but these are really dropping. Literally choking on his own secretions. Just me, naked, a suction machine and a thin catheter. Catheter after catheter. Cursing the packets as I fumble them open. Cursing my shaking hands as I follow the tortuous path from his nose down towards his lungs. Holding my own breath until finally he can breathe again. Holding him close until his colour returns to normal. Kissing his forehead until, shivering with cold and fear, I creep back under the duvet, holding my sleeping husband for reassurance, holding the video-monitor next to my face.
I realise paramedics do this all the time. And nurses. Firefighters; lifeboatmen; midwives. I guess maybe they get used to it? I am lucky. I have had to save his life maybe ten, maybe a dozen times only. They lie with an oxygen bag and mask in their hands, ready to breathe for their child who may stop breathing several times a night. And in the morning, I get up or stay up. What else is there to do? Make a strong coffee, have a shower. Walk the girls to school. Hang out the washing. I rarely tell anyone. And the feeling passes.
Everything in my life returns to normal too. At least it has every time so far.