Archive | November, 2011

Squiggles

10 Nov

Before I jump right in and talk about the fabulous fundraiser we are about to run, I wanted to share why our Ladybug and the Squiggles desperately belong together.

What on earth is a Squiggles?

The Squiggles is a modular mobility seating system created to give all the support and comfort a child could need.

“Seating systems are aimed at providing an appropriate level of postural support for each child, as well as offering comfort, skin protection and stability to enable daily functional activities to be carried out at home and at school. As postural control is a pre-requisite for most functional tasks, the inability to control posture has a significant effect on function.”  http://www.leckey.com/products/squiggles-seating-system/

The picture below is fairly close to the one that we will need. Ladybugs will have a different head rest, hers will lightly cradle her head. Because she is so teeny she won’t need the shoulder section underneath the head support. She won’t need a pummel which is by the legs, and of course some custom creativity will need to take place in order to build up the foot rest another couple of inches. The pièce de résistance ~ hers will be pink. Of course. 

The only picture of a pink Squiggles Chair I could find.

We have opted for a chair that has more of a cool stroller look rather than the typical wheel chair. Plus this was one of the only models that would fit her perfectly.

You have the option of adding on a very funky sun canopy. I won’t even begin to guess how much extra it is.

Another extra will be the activity tray and the rain cover. Little side note on the rain cover. I thought I would be crafty and save some money by purchasing one made for typical strollers and tested on the loaner Squiggles we have.  Ya….it didn’t work out so grand and let’s just leave it at that.  Below is what it should look like with the correct cover.

This is Ladybug in our beautiful Quinny stroller. I wish we could pimp it out so it would be beneficial to my princess. This beast will go through a foot of snow like nothing, the only downside being it weighs a ton. Whereas the Squiggles is surprisingly light and very easy to maneuver.

Although Ladybug looks quite comfy cozy, she has no support what so ever in her regular stroller. Her head tends to gravitate towards that outer padding in turn her rib cage heads the other way, her little tooshy is constantly sliding down because she is just to small for the harness, and sadly it doesn’t offer her one ounce of support. How can one see the world for all it’s beauty if their head is always flopping to the side and their body is slouching. It’s not possible.

Just because my daughter is unable to hold her head up, or sit up on her own doesn’t mean she isn’t entitled to have the opportunity to see the world the way so many take for granted. Seeing her in the Squiggles opens both our eyes. For the first time a mom commented on the fact that she looks around the same age as her two-year old daughter who was running around Ladybug. Ladybug is looking around enjoying things differently.  *I will have a picture of Ladybug in her temporary Squiggles posted tomorrow.*

P.S. Our fundraiser will be in full swing this weekend as Ladybug and I will be heading to watch my grandfather, her great-grandfather march in the Remembrance Day Ceremony tomorrow. He is a true hero, and I’m so thankful for all he has done.

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Putting My Pride Aside

1 Nov

Around 6 months ago I ran into a SN mom (Special Needs) in the parking lot of our previous physiotherapy. Well I would say it was more along the lines of me running up to her and asking a million questions about her sons adaptive stroller/chair. I had been pushing for quite a while to get something similar for ladybug but nothing was being done. All I heard over and over was that she is too small and too young. I refused to believe this and was on a mission to do something about it myself. Talking with this mom was like talking to a close friend. There is a connection that parents of children with special needs have. I can’t quite explain it. We can all relate in some way or another to the hardships that each has been through.

As I was talking with this mom we began venting to each other over the lack of proper therapy that was being provided. She shared with me a wonderful bit of advice – take her to a private facility and try CME therapy. I’ve heard of this amazing therapy before – another child from our CDG family actually travels to Chile to work with Ramon who is the developer of Cuevas Medek Exercise to receive intensive sessions.

“CME, the acronym for Cuevas Medek Exercise, is a physical therapy approach for infants suffering abnormal developmental motor evolution caused by a known or unknown non-degenerative syndrome affecting the Central Nervous System.

This therapy can be applied to children from the age of 3 months until they achieve and control independent walking. Because the CME physical therapy practitioner needs to expose the infant to the influence of gravity, by providing progressive distal support, the use of this therapy may be limited by the child’s size and weight.

This approach was created and developed by Ramon Cuevas, Chilean physical therapist, during the early seventies in Caracas, Venezuela.”  (http://www.cuevasmedek.com/cme_def.html)

I soon discovered that CME does to many children like my ladybug, what ABA/IBI therapy does for children with autism. It gives them a chance to do things in their lives that most likely would never have been possible.  Another thing they have in common is the cost. It is so disheartening as a mother to see first hand the positive impact these therapies can have on our children’s lives and at the same time struggle and stress about how on earth one could possibly afford it.

I’m going to post a video of my daughter after a very tough week of helping to train new CME practitioners – it is very short so I suggest not blinking. BUT…it brought tears to my eyes and gave me hope that my ladybug will be able to put weight on her legs and stand and perhaps one day walk. (watch out for the pesky pop-ups they appear at the worst time just click the ‘x’ and they will go away)

For some who see this video they will question what the big deal is – so what she stood up. However, for most who know us and the struggles that ladybug has endured this far they will smile and get the same warm fuzzy feeling I did.

I know in my heart of hearts that this will work for my ladybug – she is stubborn, tough, and a true little diva who needs the extra push that CME offers.

This is where putting my pride aside comes into place. I have been struggling with reaching out for help or accepting help offered for quite a while now. Considering we now have the chance to book an intensive block session with a wonderful CME practitioner this coming new year, as well as the impending purchase of ladybugs adaptive stroller “Squiggles” (I’ll need a whole other post to share how fantastic the Squiggles stroller is) – I am letting go of this silly thing called pride and will be starting a fundraiser to help offset the cost of CME as well as the adaptive stroller.

I’m so grateful to a very dear friend who told me (paraphrasing) it’s not like I’m asking for help to buy a new pair of sneakers or a trip to Disney Land – I’m asking for people to take part in our fundraiser to help give my daughter a fighting chance at the best life possible.

Keep posted – within the next week I will talk about the “Squiggles” stroller and share all the details of the FABULOUS Fundraising ideas we have in store.