Not special needs. More like NEED IT.

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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May’s first day at school: DENY. DENY. DENY. (from the archives)

Posted on Sep 15, 2014 | 3 comments

May’s first day at school: DENY. DENY. DENY. (from the archives)

From the archives a post for all those special needs parents whose children are starting school this month. DENY. DENY. DENY. I’ve been there. I’m a few years down the road now and I can say, categorically, it was the best thing we ever did for May. Here’s why: She attends a wonderful school with therapists on call and lots of people who love her. There are all kinds of things there that there is no possible way I could provide: hydrotherapy, dance class, sensory rooms and a massive playground. Hats off to you, parents. This will not be an easy term. Stay strong. You are doing the right thing. ____________________________________ May starts school tomorrow. Her bag is packed. I will accompany her to her classroom. I will sit with her during part of the session. I will hate it. I will hate every minute. I would give literally my right arm to not send her, for her not to need to be there, to never ever hear the words “brain damaged” or “special needs” ever again. I don’t want to describe to her new teachers her eating habits, physical development or worse, cognitive development; her lack of speech, ability to chew solid foods, sit. Torture. I don’t want to fight her corner. I don’t want to argue with new therapists. Be disappointment by the lack of their commitment. Worry about leaving May in their care. I don’t want to read her school reports. I don’t want to see her art work that she didn’t really make. Or attend parent conferences where they get excited about how she accomplished a whole lot except the basics like saying her own name. I don’t care if they help her. I don’t care if she likes it. I don’t care if she progresses. Right now, I just want to keep her home in my arms and pretend it is not happening. *You may have noted my decision in this post to go with direct honesty rather than relentless positivity. Also, I made a “May in monkey pajamas” photo editorial decision that I believe pictorially represents my denial. _________________________ Want to know what May’s new school is like? You may be interested in a previous post, the aptly titled ‘So, what’s May’s new school...

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Another “impossible” on the 1000 things May would never do – done

Posted on Jul 14, 2014 | 5 comments

Another “impossible” on the 1000 things May would never do – done

Five years ago, I sat in a small office of a hospital with a professor at one side of a desk, my husband’s hand in mine and the weight of a list of all the things my daughter would never ever do, suffocating me. Thousands and thousands of activities pouring through my mind. Everything from toilet training to going to the circus. So, what happened next? Okay – toilet training is out. But there were plenty we did do. May went to the theatre. She performed in a school assembly. She danced (she doesn’t stop bouncing sometimes). Swimming. Travelling. Bed time stories. Carving a pumpkin at Halloween. Eating ice cream. My word, for some reason, the idea that May would never taste ice cream killed me. I was wrong. She loves it. Today, we ticked off yet another item on the list of ‘1000 things May will never do’. Today, she rode a bike. Next, the...

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5 for Friday: Power, Mystery and History!

Posted on May 2, 2014 | 0 comments

5 for Friday: Power, Mystery and History!

It’s Week Three of our 5 for Friday: Special Needs Round-Up. The Power! The Mystery! The History! Special needs blogs are not just about kids – as adorable as they are. This week, writers share inspiration from photography to the ancient past. Enjoy! 1. I stumbled across your blog a little over two years ago–and it changed my life. So begins an email to Kelle Hampton that she saved for years before an meeting took place that inspired her to reach out to find out more: Creating Constellations. For Kirsten from Enjoying the Small Things. 2. Sometimes you just need a photo. Not even any words. See more of these beautiful images over at Bringing the Sunshine. 3. Who was the most powerful disabled person in history? Franklin D. Roosevelt, right? Right? Wrong. I love puzzles like this, especially when they have such interesting answers. Andrew Pulrang reveals all here on Shared Abilities. 4. Stacy of Noah’s Miracle drew my attention to a post at Hope4Katy.com called The Five Things You Should Know About a Special Needs Family. Stacy helpfully summarized the points, which will ring true for many special needs parents: 1) We’re Ostracized 2) We’re Jealous 3) We’re Scared 4) We’re good at hiding things/We’re not good at hiding things 5) We’re stronger than you realize/We’re more fragile than you realize 5. I love this family. They travel the world. They are always smiling. And now, they are raising money for a cause special to their hearts by not only running a 5K – which Kara of Free as Trees admits the last time she “jogged if you can call it that” her training lasted one day* – but taking their son, Sebastian, in his wheelchair along with them. *She did have an excuse, but you will have to click through to find out. Have you written or read a post about special needs that you want to share? Add it to the comments or email contact.stacie@gmail.com. Want more? Read the previous 5 for...

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5 for Friday: Special Needs Round Up

Posted on Apr 25, 2014 | 1 comment

5 for Friday: Special Needs Round Up

It’s our second week covering special needs blogs. Hooray! Our first anniversary. I’d like to thank my family, friends, the academy… erm, okay I’ll get to it. 1. Renata from Just Bring the Chocolate has had enough. Why does everything about children with special needs have to be awful? Along with her family, and a load of other families, she created an awareness video for Undiagnosed Children’s Day (which happens to be today) that is entirely fun. My son even stopped watching Thomas the Tank Engine to see what was so interesting. Now that is major. And here it is: 2. Shasta over at Outrageous Fortune wrote a beautiful post about the complex feelings of having twins (one with cerebral palsy and one without). Also, don’t you think this photo of her two boys with her at the Science Museum is inspired when considering the balancing act she tries to achieve with them? 3.  In her post Dear You, what a year… Kate Leong expresses her gratitude towards readers one year after her son passed away. She describes the resulting tidal wave of support for Gavin’s Trust Project, founded in his name. She writes, “The tagline of my blog has been ‘A Mommy’s Quest to Make the Impossible, Possible… and the Unexpected Miracles Along the Way.’ There are always unexpected miracles… even if they are born out of a tragedy.”  4. Were you as troubled as I was by the coverage of the mother who killed her three disabled children in South London this week because she “struggled” to look after her children despite her £2-million house? (And really, is it important how many bedroom she had?) A welcome perspective here from BBC’s Ouch from people with SMA (spinal muscular atrophy) and parents. Toby Mildon, a 31-year-old project manager at the BBC, who has type 2 SMA wrote: “If you know a mum with an SMA baby, tell them to stay away from the fatalistic information on the web and sometimes given by medical people! They need to see lived experience and turn to people like me, my friends and our parents.” 5. Finally, a small “everyday” thought from Lisa Leonard at her blog: After I changed my third poopy diaper that day, I turned to my husband and said, “I’ll always change diapers. I will never NOT change diapers.” Our oldest son David has a disability and will likely be diapered his entire life. At the end of a long day, I felt defeated. I felt done. I felt empty. Then my husband asked me, “What if changing diapers is the most important thing you do all day? What if it is? Know a special needs blog post you feel needs highlight? Add it to the comments below or email me:...

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