Full

I’m due for a new post, but my brain is so full of ideas this evening that I really can’t find a way to get anything coherent out. I actually worked for quite some time on a post, but I’m just not quite ready to send it out into the world, so today I have nothing.

I have a medical equipment representative coming out to my house tomorrow. Charlie’s PT and OT will be present and hopefully he’ll have some ideas about what types of equipment will work best for Charlie. There are a lot of emotions and thoughts running through my head and hopefully things will be a little more settled tomorrow. Charlie’s PT is lobbying hard for a wheelchair. This is a radical departure from where we were just a few days ago, so I’m still sorting out my feelings. Am I the only one who thinks it’s silly to order a wheelchair for a two-year old? I mean, if he could use it to move himself around then that would be great, but I suspect I’ll be highly encouraged to buy some souped-up stroller and that seems ridiculous for a kid with who can sit in a regular stroller easily.

Charlie’s just a tough case because he’s so complete Moderate in his disability and his PT agrees with me so it’s not just me being irrational. He not so disabled that he obviously needs things, but he’s disabled enough that his physicality holds him back. Too add to the confusion, my husband hates the idea especially since we’d just picked out a really nice stroller that we thought would last us a few more years.

Like I said, hopefully tomorrow will bring some clarity because right now I have no idea what I’m doing.

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Comments

  1. It will be a good time to get some ideas, but remember you don't have to decide on anything tomorrow. It does seem a bit strange to me that they would want him in a wheelchair, rather than a good positioning chair for therapy or just to be playing in the house. Max needs a wheelchair, as he is not mobile on his own, and we still use a jogger type when we're out and about. Because we want him to tolerate being out, and enjoy his times out of the house. We have his wheelchair and positioning chairs for all day in the house. But we get out so infrequently with him that he doesn't need to be strapped in for a few hours!

    Best of luck tomorrow.

  2. I'm a grownup wheelchair user – 24, and I use a powerchair.

    What you need to know is this:

    Strollers are for babies. Charlie is not a baby. When you're needing wheels beyond the age at which you would ordinarily be walking, it's time for a wheelchair. It's a huge part of becoming, and being recognised as (and therefore being interacted with as) a little boy. Growing up.

    Incidentally if he can't use his hands to move a wheelchair himself, then go straight for the powerchair option. He may well walk when he's older but all of my friends who can walk a bit (I can't) use wheelchairs to be active in the community, outside the house etc. It's just not practical for your main mode of transport to be clinging onto a walker, crutches or a parent's hand. The correct time to introduce a wheelchair is the age at which their peers will be walking – particularly so for powerchairs – as that'll ensure that by the time he's at preschool he'll be really confident and competent in it and find it easy to keep up with all his buddies.

    Starting to use a wheelchair was quite literally the best decision I ever made. I went from daily pain and exhaustion, spending all my energy just getting from A to B, to sudden exhilarating freedom and speed, independance and the most amazing surge in energy that I could suddenly spend on what I wanted.

  3. Katie,

    I have to agree with Becca. Mobility is what is important not the means. And there is no way that Charlie can interact with his peers in a stroller. And he needs to be interacting with his peers.

    The one thing I do not regret is getting Moo into a wheelchair early and a powerchair as soon as I could. It has assisted hugely in his cognitive development.

    That is just my opinion. But I guess the other thing to mention is can't Charlie use a gait trainer like a pony?

    Jacqui

  4. Thanks so much everyone! This is some really great food for thought and it all makes complete sense to me.

    Jacqui, to answer your question, no Charlie can't get around with a Pony walker. His strength is almost entirely in his upper body. I have no doubt that we'll change that with ABR but so far our work has been mostly above the waist. He has taken a step or two in a gait trainer, but no meaningful ambulation (is that a word?)

  5. MeghatronsMom says:

    First, ambulation is the right word!

    Second, we are struggling here too. We have had the Maclaren Major stroller for 3 years. We just ordered a wheel chair a few weeks ago. Yes, she is ambulatory, but she fatigues very easily. She has come to hate her "stroller" informing us she is not a baby. She almost refuses to ride in it, forcing us to carry her or ride in the cart at the store. She is getting too big for both of those as well.

    DH & I disagree on the wheelchair thing, but he will come around as always. I think it will be good to give her independence, even when her legs are tired.

    I have more to add, but dont feel very well this morning. I do have a wonderful supported insert for the maclaren we don't use. I will get back with you on all of this.

  6. Katy,

    Jumping on the Becca/Jacqui train here. I am reallying leaning toward skipping the SN stroller and going straight to a wheelchair for Fletcher.

    Surprisingly, he looked "right" to me in a chair over stroller when we tried them out. Looked like a little boy, not a baby (I think it is easier for me to realize this now that there is another baby in the house).

    And I have to say, if I thought Fletcher would be able to move a manual wheelchair by himself (as I suspect may be the case with Charlie) he would have gotten one yesterday.

  7. I think I'm with you on the wheelchair thing. Doesn't make a ton of sense if a) it doesn't have safety harnesses like a larger stroller does and b) if the occupant cannot self propel it why the need right now?

    I have a stroller that might fit kids up to 3-4. Heck, I can probably still fit my 5 year old in it. I'll try if you want me to. It's the single greatest stroller I have ever owned because it is All-Terrain. Goes anywhere. You even have to inflate the tires, made by Jeep I think. Lemme see if I can find a link to it.

  8. Baylee and Blair's page says:

    Hey girl… that will be good that everyone will be present and kind of brainstorm together. You are right about the wheelchair. It would be different if it's something he can easily use himself. Hang in there girl!

    Hugs – Tiff

  9. Hi Katy,

    I hope I didn't offend you. Charlie just looks so great in your photos and he can stand (which is something Moo can't do), so i thought that he may be able to use a gait trainer. I'm sure ABR will benefit Charlie so much in the future.

    I know you have a new post so i'm just about to go and read, but just thought I should mention that it takes time to learn how to use a wheelchair. No kid hops in it and can propel straight away. He may not be able to use it now, but thats not to say that he won't learn over a period of time.

    J