Posts Tagged "motherhood"

The joy of parenting a special needs child caught on video

Posted on May 30, 2015 | 4 comments

The joy of parenting a special needs child caught on video

I almost didn’t use the phrase “Parenting a special needs child” in the title of this post. Don’t get me wrong. I have no objection to the term “special needs child”. I live in reality. I call it like it is. But, sometimes there is no special needs in the equation. Sometimes, like this video shows, children are just children. They have temper tantrums. They get sick. And hell yes, they shriek with joy and giggles sometimes. When May shrieks with joy and giggles, as her mama, I don’t blink back bittersweet tears and think: “Ah, bless. She is so disabled and yet so happy. Isn’t she sweet despite everything?” No. I struggle to hold the camera straight because I am bending over with belly laughs myself. This is what parenting a special needs child is like. This is what parenting any child is like. Ignore the rough patches for the moment. May is a little girl. She likes to sing and dance with her father just like every other little girl in the world does. I get a lot of letters from parents with babies just diagnosed or still in the hospital. This is for you guys. This can be your “normal”...

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This is not a joke.

Posted on Feb 15, 2015 | 0 comments

This is not a joke.

A photo to illustrate the lunacy we are up against. This family spent two years campaigning for access to their own home. “We weren’t fighting for a massive steel ramp – we just wanted to improve Katie’s quality of life,” her mother said. Mother’s anger after council install ‘slalom’ ramp for disabled daughter in front garden http://t.co/TI0w9kt0f8 pic.twitter.com/IAVRsnfL71 — Telegraph News (@TelegraphNews) February 13, 2014   What’s the craziest thing you know of that a council has done to “help” a disabled...

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Kids all access… Tower Bridge

Posted on Jan 19, 2015 | 0 comments

Kids all access… Tower Bridge

When you are confined to a wheelchair, it is hard to imagine climbing to the greatest heights. What am I talking about??? We live in LONDON. Wheelchairs top any view if there’s a lift or a wheel involved. A big wheel – the London Eye.  This weekend we hit new heights going to the Tower Bridge Exhibition. The exhibition allows you to take a lift up to the top of Tower Bridge and walk across a glass walkway over the Thames river. The views are incredible. My three-year old especially enjoyed “the show” which was a film in which  life-sized historical figures bickered about the bridge’s history. I’m not sure why he loved it so much – three-year olds are a mystery. You can also view the engine room of the bridge.   It is FREE for both a disabled person and their carer, and children under-5. So we only had to pay for one ticket. That is one thrifty bargain. Parking is easy. There is a parking lot at Tower Hill with very reasonable prices for London. And, it’s only £2.50 to park on a Sunday which is when we went....

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The Special Needs Sleep Guide or “Sleep? What the hell is that?”

Posted on Jan 7, 2015 | 2 comments

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

It’s 5.30 AM. Why am I up, you ask? If you are a parent to child with special needs you probably already know. May woke at 2.30 and mewed/cried/sobbed for attention until 3.45. I’m trying to retrain her to soothe herself to sleep so I let her “cry-it-out” a method of sleep training used on babies. You let them cry and extend the amount of time in between going in to comfort them. I lay with May the first time, but after that I held her hand or stroked her face. I left her alone and I waited in my bed for the first sound of her complaints which always seemed to accompany me just falling back to sleep. Each time, I waited just that little bit longer before joining her. Will it work? It has in the past. Back in 2011, I called it the Sleep Experiment. Tonight, it took over an hour. Tomorrow, the hope is that it will take less. And then less… Despite our success, we have never had the complete peace of knowing she will sleep through the night. For the past six months, for example, May has been sleeping through but waking at 5 AM every morning ready to go. Nothing we do seems to change that. If we could improve this one area, our lives would be infinitely better. May’s too – after all a rested child is a happier one. On nights like tonight, I lie in bed for hours after mulling over my life, May’s future and the slim hope this may change. Oh, for a bit of sleep to ease my mind. What works? For us, the “cry-it-out” method did transform her sleep. Before we started it, May would wake up several times a night screaming. Not crying or complaining – screaming. She was two years old, well past the baby sleep phase and we were going out of our minds. Once we did it, she learned to soothe herself. Yes, she still woke up, but it went from 3 or 4 times a night to 1 or 2. That was a major breakthrough. Keeping her well-fed helped. Once she was able to eat better, she slept better. She simply didn’t wake up hungry needing a bottle. Keeping her active exhausted her. Nursery, and then school, made a huge difference. She sleeps more fitfully when she is not in school. The stimulation of her days tire her out and allow her to sleep better. Highly recommended for those of you who can find a welcoming childcare provider. What works for you? In the hope that we all get a better night’s rest, I want to turn the conversation over to you: What do you do to help your special needs child sleep better? READ MORE: My Sleep Experiment 2011. Start at the bottom to read in...

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Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I panicked. That toy is not just my daughter’s favourite; it is her best friend, her comforter, her joy, her connection to the world. May is five and she is brain-damaged. She has very little cognitive or physical abilities. This surgery is her second this year and won’t be the last she needs to help her growing body because she doesn’t move or support herself in any of the ways another child would to develop normally. And, that breaks my heart. But, it’s not the whole picture. May was born this way. In the days after her birth, the shock of this situation was one I found difficult to get past. I thought surgeries like this would define our life — that we would be in and out of hospitals constantly. And if not hospitals, than therapists’ rooms or dieticians’ clinics or doctors’ surgeries. At first it felt like that. Now, our lives have settled into routines and the shock of her brain injuries are long past us. May’s medical needs are far less than we originally imagined. Instead, we make a point of enjoying our lives. After all, those homemade chocolate chip cookies aren’t going to make themselves. It would be easy for my mindset to remain at my daughter’s bedside in the hospital. But, I want to be where those warm cookies are. We try to focus on what May can do, and what she does enjoy. Ice cream and cuddles and long drives in the car. She loves Julia Donaldson books (she was the witch from Room on the Broom for Halloween). She loves Bob Dylan. She loves Minnie Mouse. And she loves her little brother (when he isn’t driving her crazy). May loves music and she’s brought it into our lives. She and her daddy spend hours singing songs together. I take her to see the London Symphony Orchestra and for walks in the park because she loves birdsong too. Her laugh is infectious. She sticks out the tip of her tongue when she is concentrating and it is completely adorable. Why not focus on these things? Why focus on surgeries and developmental delay? On Sunday night, I placed May’s monkey toy in her hospital bag. In a world where I can control little of my daughter’s condition, I can control this. I can ensure that when she wakes from surgery, that ratty monkey toy is there by her side to cheer her up. Just like she brings joy to all of us....

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