Why the Upsee was an Oopsie for us….

Let me first say this so I don’t get anyone upset! Every child is different, as are their needs, their disability, their families. I commend all parents who have the openess in their minds to seek out therapies, equipment, treatments and life experiences that they believe will enhance the world of their child with special needs.

Ok! Having that out of the way, I want to talk about our latest experience, and why I wanted to write about it.

The Upsee. For those of you who have never heard of it, here is a link to their site. http://www.fireflyfriends.com/upsee

This is a walking aid that was invented by a mother of a son with Cerebral Palsy. It hit the market a few weeks ago, and has been all that the special needs world can talk about. Their videos have gone viral, and it has been big news on both sides of the pond.

When I first saw it, I immediately said, ” I have to have that for Maclain”. I HAVE TO HAVE THAT!
I was mesmorized by the videos and photos of children standing upright and essentially walking with their parents via a supportive vest and straps. I right away thought about all the countless times that we have held Maclain under his arms as we walk with him around the house in short spurts, or walk him up and down the stairs. My kid loves to walk. He loves to be in his walker, upright. He loves to explore his world, move, feel free.
Seeing that product stired me up again the way I used to be when Maclain was first diagnosed. I would scour the web for products that would help Maclain to sit, or lift his head, or walk, eat, drink, sleep, and the list goes on. And with every new discovery, I would get hyper and excited, and email my husband the links and start to envision the possibilities. And this is exactly what happened when the upsee was introduced to the world.
I have always been a buy and try person, so I was already figuring out how quickly I could buy this for Maclain.

At the same time as all this calculating was going on in my head, I had friends that were using the upsee and loving it, and even our amazing PT had sent me a message to ask if I had seen it, and that she thought it might work for Mac. And as I excitedly texted her back, that yes, I think it would be perfect for him, she responded that we for sure should try it before I buy one. This is why I love her. She gets just as revved up, and is so supportive of trying new things, but she is also so great about her realistic approach. So I agreed, that yes, we should try it first. But I wasn’t worried, after seeing all the videos, and pictures, and reading the testimonials, this was going to be a slam dunk. I would be ordering the Upsee for sure. But maybe I will hold off a week until we try it first. And then I started to think about whether this was going to actually work for Maclain. I liken it to that moment when you really want to buy a new purse, sweater, patio set, tv, and the person with you says ” Are you sure? Do you really need this? Will it fit? Will you actually use it? Can you afford it? Can you live without it?” It made me start to think about the possible downsides.

So I was fortunate enough to borrow one from one of my besties, Dana, who had a wonderful experience with her daughter Taylor in it, dancing up a storm.

I waited until just the right time, which happened to be Friday night after dinner, while the kids were playing outside and the weather was nice. I got everything all laid out, and read the instructions and then started the process. And here is how our experience went.

1) It took 2 people not including me to get Mac into it. He is tall, he is very low toned, and he also has alot of uncontrolled movements. This is not a one person job, at least not in our case.

2) It was very difficult to ensure that he was strapped in properly. I can’t imagine how it would be for a chid who had hip or pelvic issues. We did the best we could, and I was ok with it because it would only be for a short period. I cannot imagine buying the Upsee without trying it, and then taking it to a PT to make sure that the child is using it correctly. I read the instructions, watched the video, got prepared. I still think that he wasn’t fitting in it properly. This is also the problem with signifiant low tone in the neck, shoulders and trunk.

3) Standing up with a child strapped to you, and your feet strapped together isn’t the easiest thing in the world.

4) Again Maclain is very low toned. With poor head control. And is very tall. And getting heavy. When he wasn’t bearing weight, he would sink into the harness. This hurt me because the full weight of his body would pull me down and the straps would dig into me. And it left red marks on him from when he was just hanging. His head hung down the whole time. In his walker, his head is up and looking around, and he is so engaged in his world. The upsee did not provide him with the support he need to keep his head up.

5) For us, it was not hands free. I had to hold him up at the shoulder straps to give him the support he needed. Even with the straps tightened. And this was the only way to keep the straps from digging into me when he slumped.

6) He did not take steps the way I thought he would. He relied on me to do all the walking. Which was the total oppostie of how he is in his walker. In his walker, he zooms, and runs, and is free, and does it all by himself. Even if he has no directional control, it is totally “independant”. I actually had a moment where I felt that I was taking away the indepenance that we had worked so hard to get him. And when I stopped to take a break, and he wanted more, he had to rely on me to keep walking for him. Without offending anyone, this is coming from someone who has a child that needs a wheelchair for his mobility for 90% of the time, I cannot imagine why if your child is proficient with their walker, you would want to put them in an Upsee. I feel like that is a step back. Its like putting a child back in a carrier after they are able to walk well enough and long enough and dont need to be carried anymore. And with Maclain being on the bigger side of the available sizes, if he loved it, and then in a year couldn’t use one anymore, he would be beside himself.

7) I tripped and almost fell, and I thought I was going to puke. My stomach jumped into my throat. And I then started to think about that. What would happen if you lost balance, or tripped. With him strapped to me?

8) My kid who loves to walk, cries when he isn’t in his walker enough, wants to be with the other kids doing stuff, asked to be “out” of the upsee after 15 minutes. And each time I asked him if he wanted to use it again he said “No” and pouted.

I have to tell you. I wanted to cry. It brought back all those feelings that I used to get when I would try something on Maclain thiking it was going to be amazing, and it wasn’t. I felt again like he was so different. Even different  than all those other kids with CP who were having the time of their lives in the Upsee.

I took a deep breath, and reminded myself that we were going to be trying it with our PT, and that maybe I had done it all wrong, and it was still going to be an option for him. We took him there yesterday, and the experience was the same, but now it was also with someone else, and someone that knows Maclain very well, and knows me very well. The experience was almost identical. We just couldn’t find the justification for spending almost $500.00 on something that Maclain couldn’t really use effectively, and that I had so many reservations about. I won’t lie and say I am not disappointed, but now that I have had a chance to let the hype die down, and really took the time to assess it, and try it, I know that not getting one for him is the right decision. I think if we ended up buying one, I would get upset everytime we tried it, because the outcome would be the same. And my reasons for being hesitant will not change.

I am happy for those parents and children who have had a great experience, and love it. And I hope they continue to enjoy using it! But for those parents who are on the fence about it, I would encourage you to really think it through, and not just get caught up with all the excitement, and try to try before you buy. $500.00 is alot of money for us parents who have children with special needs. Don’t feel that you have to get one because everyone else seems to be getting one. Also remember that most of the parents and children using them, have been given them for free as part of the initial marketing plan, so there was no risk it trying it out. I also worry about the quest to make our kids walk. There was even inferrence in the webinars that kids in wheelchairs can’t get out in the community the way a child in an Upsee could, and I took a bit of an exception to that. Maclain sees the world just fine. And misses out on very very little. I also cringed at the suggestions that the device could change the severity of a child’s condition and actually move them from a child with quadrapalegic CP, to diplegic. Not that I am saying that those functional classifications, and diganosis can’t change, I love it when doctors are wrong. But it won’t just be becauase Johnny was using his Upsee. And for many parents who are at “That” point in the early days, hearing these claims can be something to grab onto.

So, I find myself another experience richer, having held on to my $500.00 for the next thing that I may want to try, and reminded once again that one size does not fit all.

 

 

 

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6 thoughts on “Why the Upsee was an Oopsie for us….

  1. So well said Brenda – thank you for this. I too was hopeful that the Upsee might be great for Katie and have actually felt left behind by not getting on the Upsee bandwagon yet.

    You made some overall points and observations that really resonated with me. And at the end of the day, there is no one solution for all our kiddies.

    Thanks for taking the time to share your experience and all the best to those who have had good experiences with the Upsee. We may try it if possible but we won’t just buy it and hope it works.

    Cheers
    Sarah

  2. well i am glad to see someone who is isn’t afraid to actually ‘criticise’ this product, we were bombarded all thorough the media this week about this – I know people seem to like it but I can see so many limitations and false hopes with it. Don’t we just wish people were more enlightened about wheelchairs than having this thrown at us, the stories in the media were full of gushy emotional commentary, I just hate to see parents sucked into things like this, its’s as if its the worst thing in the world not to be able to walk, I would rather attitudes were changed rather than this. I know people who are wheelchair users and they were just sick of being bombarded by this. Looks like its a money spinner though, but it’s a gadget and I just wonder what happens when the child grows out of it, what then? How does the parent cope with that not to mention the potential damage accrued to the parent or sibling who has to carry the child around on it!

  3. I am sure glad to have read this. Our PT is very excited about the Upsee and is purchasing one for her clinic. I have considered raising money to purchase one but am also skeptical. I will for sure try it first.

  4. Thank you very much for sharing your experience. It is really appreciated. I am seriously considering to buy one for my daughter, but I think I should test it out before buying.

  5. I purchased one for my daughter who has SMA – Spinal Muscular Atrophy…so basically no tone and no ability to bear weight…I agree with you that it is not right for “low tone” kids because the brunt of the weight is on the adult’s lower back. I think it is a GREAT product for kids who have some ability to bear weight but are unable to navigate/stand independently.

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