park3 2

park2 2

park1 2

IMG_0835

5 for Friday: Special Needs Round-Up

April 18, 2014 at 22:59

Mama Lewis

2

5 for friday park3Welcome to the inaugural edition of 5 for Friday – the Mama Lewis Special Needs Round-Up.

For the next month, I’ll trial this round-up of highlights from special needs blogs. If it proves popular, I will continue and if not then I’ll proceed as I have been (posting endlessly about May’s superior power of cuteness).

Email contact.stacie@gmail.com with suggestions for next week!

1. It’s Easter Weekend so head to It’s Fun for All at Jonathan’s Bookshelf for some accessible Easter activities. Once you are done reading about their fun fishing game be sure to click through to read about the special easter egg hunt. Truly ingenious idea.

2. 10 Freedoms Every Special Needs Child Should Have on Friendship Circle was inspired by the Jewish Passover holiday but it is a must-read for all parents of children with special needs. How about #3 Freedom from appointments: Schedule one day without medical or therapy appointments. No insurance, medical or therapy-related phone calls, either. Three cheers to that!

3. Take your special needs kiddie and GET OUT. That’s always been my advice. Let’s Go Out: 5 PrAACtical ideas by PrAACtical ACC shows how you can use a walk outdoors to explore language as well as nature.

4. For those of you living in the UK – or just interested in how special needs are met on the other side of the pond – Special Needs Jungle featured a guest post from Steph’s Two GirlsSteph Curtis was asked to be part of the Pathfinder Pilot of the governments new SEN reforms and gives a behind-the-scenes post to what the rest of the country will be shortly experiencing.

5. Finally a personal one for me this week. To celebrate his birthday, my father has thoughtfully decided to take all the grandkids (and their parents) on a Disney cruise. But, how do I begin to prepare for sailing with May? Cruising with special needs children by Glad to be your dad is the first post I’ve come across that is specific to Disney cruising.

Enjoyed this new series on Mama Lewis or have a suggestion to add to the list? Add a comment!

How to get your special needs kiddie to LOVE therapy

April 16, 2014 at 15:45

Mama Lewis

3

Happy May!Tummy time? Hates it. Stretches? Not fun. May is severely disabled but she is not lacking in opinions.

So how do we get our kiddies who need therapy to do it, when they hate it? It takes a complete re-think of what therapy is.

First, what therapy is not:

It is not crammed into every free moment of the day. Children need down time too. They need time to just play (you do too!) and to let all the benefits of therapy sink in.

It is not everything and anything because, hey, it can’t hurt. Yes, it can hurt if you are wasting your time and money doing something that has no proven benefit.

It is not hard work. Good therapy builds on a child’s strengths, it doesn’t force them to do things that are impossible for them.

So, what can therapy be?

It is inserted throughout the day, in the midst of everyday activities. Therapy should blend into normal life so your child can see first hand its benefits. Try stretches in the bath with lovely bubbles as stimulation. Use snack time to encourage them to bring their hands to their mouths.

Make it fun. It should be as fun and as interesting as possible. Do you like doing reps with weights at the gym? It is about the dullest thing in the world.

Use things they already love to engage them. May loves music so she hears a lot of it when we want her to do something therapeutic. What does your child love?

Finally, here is a simple example of May “doing therapy” and loving it. It looks like she is playing with her monkey toy. What is she really doing? Lifting her head and holding it midline. Stretching out her arms. Pressing buttons to learn cause and effect. Listening for cues.

What tricks do you use to get your kiddie to LOVE therapy?

You tell me. What's going on in this photo?

April 15, 2014 at 11:07

Mama Lewis

3

Happy May!

 

So what do you think is going on here? All captions accepted in the comments below!

Answer tomorrow…

Update on my health: 6 months post-transplant

April 7, 2014 at 22:21

Mama Lewis

5

A lot of people (yes, all two of you) have been asking about my health. As it is six-months post-bone marrow transplant, I thought I’d delight you with a little update.

The good news is I’m still in remission. So far, the bone marrow seems to be working its magic. I have a brand new immune system – that means I’ll need all my baby vaccinations repeated – but miraculously, despite my husband and the kids being sick at various points, I have managed to avoid being ill entirely.

The difficult part is that I’m still stuck at home a lot. I’m very tired and a long day with friends – as I had yesterday – can wear me out so much I need to stay in bed for the whole of the following day – as I did today. That is really depressing. And advice to “just rest” and “watch lots of television” or “take a bath” is much easier to follow in theory than in practice when that’s all you’ve been doing for almost a year.

Last week, my doctors told me I can’t return to work this school year. They said that, in my situation – without being vaccinated and with a compromised immune system – my job as a teacher is more dangerous than being a police officer. My school have been very understanding, but I really miss teaching. I miss the whole social network, studying literature and I especially miss forcing a room full of children to listen to me crack jokes all day.

So, what am I doing besides nothing? I’m learning to cook. I make a new dish or two every week and some of them are even edible. I’m writing a book. Actually, I’m writing three books. Which sounds incredible until you realize it is a completely unproductive method of finishing one book. I’m swimming again, about once a week. I’m ridding our house of clutter, which means I have created a wall of bags for the charity shop. Great insulation in the winter those bags, not so useful now that it’s April.

And – I’m spending time with my kiddies. This is the one blessing convalescing at home brings. I never thought I’d be a stay-at-home mother, but here I am. And I have to say, I love it. I get down on my hands and knees every day and play with blocks and read bedtime stories and sing and laugh and cuddle and it is absolutely the greatest.

May wants you to GET OUT. And here's why...

March 31, 2014 at 10:08

Mama Lewis

3

Special needs can sometimes feel like a cage. At times, don’t we all just want to dig our heals in and scream: MAKE IT EASY OR I’M NOT GOING.

Trips out don’t always end well. May hated our last visit to the Barbican. She screamed from the moment we arrived until the moment the ice cream arrived. It was awful. Both of us missed the entire performance and this was something she loves: music. That’s when it is really bad. When it is a sure thing and it still goes wrong.

So, what’s the best thing to do in such a circumstance? Get back on that horse, Mama.

Recently, I met two mamas who didn’t just get out, they got out of the country with their families. Kara from Free as Trees and Stacy from Noah’s Miracle both have children with disabilities – but that hasn’t stopped them or their children. These two inspiring women flew their families from Canada and America, respectively, all the way to Northern Ireland.

They were on my mind this weekend when the sun was shining and I wanted to enjoy Mother’s Day with my family. I love strolling around our local parks, but I wanted something less conventional. About six months ago, we discovered a new spot but haven’t been back since I was admitted to the hospital for my bone marrow transplant. And May has never been.

So, we took May’s wheelchair off-roading at the Selsdon Wood nature reserve. You know that feeling when your face aches from smiling so much. Yes, that. Not special needs, more like NEED IT.

20140330_170146 title

And May’s Mother Day gift to all the rest of you mamas is the same: GET OUT. When you expand your horizons, you push violently on the boundaries that contain you and say: I will not be caged in. I will not.

For more ideas on how to access activities with your child, try the Kids All Access series.