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My son hates the wheelchair
 

Alessandra

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Joined: 2016-08-19 Posts: 4
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Hi,
My name is Alessandra and I have a 4 years old son, Lucca. He has Cerebral Palsy.
He stayed at at the hospital for his first 8 months and at home for a long period of time without going out. So, most of the time, he was with us in our lap or in the floor.
He hates to be in the wheelchair. We bought him the Kimba Neo, from Ottobock. It’s well adapted and still, he cry almost all the time… And it happens the same in the car seat.  He screams all the time until we take him out. For him to stay in the car has to have someone besides him, distracting, playing and singing all the time. It’s crazy!!!
I don’t know what else to do!!! He is getting big and we can’t keep holding him all the time. What can I do?
Thanks,
Alessandra

22 May 2017 02:56 PM # 1

Firefly Community Admin

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Joined: 2014-10-13 Posts: 3
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Hi Alessandra,
Welcome to the Firefly Community Forum. We have sent your post to a couple of our CP mums and a therapist we work with. Hopefully someone will be along soon to give you some help.

Thanks, Claire

22 May 2017 02:57 PM # 2

Alessandra

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Joined: 2016-08-19 Posts: 4
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Thank you very much!

22 May 2017 03:06 PM # 3

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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Hi Alessandra,

My son doesn’t have CP but he is really sensory defensive and very low toned with bad reflux so struggled with the car seat and his pram for a long time.

Some of this was due to discomfort - he wasn’t well enough supported in either. Has you son’s seating been checked by an OT - it might be that’s he’s really uncomfortable. Also in certain positions his reflux was really bad.

The other was his sensory issues - he hated lots of noises. All experienced when out and about - even a motorbike passing would’ve set him off. We did a lot of sensory work - body brushing and deep pressure to try to work on this.

I’m not sure of your son’s level of learning ability but it could be that this is just a learned behaviour - he knows if he cries you’ll lift him out and it’s always so much nicer getting snuggles from mum or dad. Could you try really short periods of time so lifting him out while he’s still happy either that or ride out the crying with a simple consistent message of no crying and the time he has to be in it for and then rewarding him for times not crying.

If it’s any consolation most parents will say it does get easier with time what ever the reason for the crying is/was.

 

22 May 2017 04:02 PM # 4

Alessandra

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Joined: 2016-08-19 Posts: 4
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Hi!!!
We had it adapted by the OT and the Physiotherapist. He likes us to run with him but even with the table, he doesn’t like to stay and play in the wheelchair…
My husband always says that I can’t stand leave him crying a bit for him to get acostume to it, but it breaks my heart… Yesterday he stayed 30 minutes crying in the car seat wile we were going to a friends house. And nothing would calm him. But I’ll try again the massage and rewarding.
Thank you so much. It’s really good to know that it’s not just with me.

22 May 2017 05:36 PM # 5

Emmy_heaton-x

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Joined: 2015-03-08 Posts: 4
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Hey!

My son is now 4.5years, he has cerebral palsy along with epilepsy, autism and the usual ‘shopping list’, he used to hate any form of seating!! He always had to be on my knee, going anywhere in the car was impossible and we’ve had to stop many of times to calm him when he’s gotten himself so upset!

I really can’t suggest anything other than trying different forms of seating for short periods of time, going off you saying the crying stops with distraction etc, I’d say it’s the separation that’s causing the upset!!

Start slow, short periods of time, build up slowly and good luck!! Xx

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Emmy xx

31 May 2017 10:14 AM # 6

Firefly Community Admin

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Hi Alessandra,

We just heard word back from our PT - here is some of his suggestions…

The reasons could be behavioural – learned behaviour as you admitted that you did struggle to let your son cry. I would have advised slowly building the time the child spent in the chair similar to how you would encourage any child to sleep. But that involves allowing the child to cry. Also having fun activities whilst in the chair would be beneficial.

If your son has sensory issues this could be a cause of the problem but that would also involve increasing time in the chair to desensitize and also things like rolling the child in a blanket to get some deep pressure. If this was the concern it would be beneficial to speak to your OT who would be more accustomed to dealing with sensory issues.

Hope this is helpful.

 

01 June 2017 08:45 PM # 7

Alessandra

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Joined: 2016-08-19 Posts: 4
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Hi!!!
Thanks for the reply!!!
We are using more the sensory clothes and doing some massage when he is on the wheelchair. And trying to ignore a bit when he is crying and you know what? It’s WORKING! He is much more confortble now. Thank you so much for your help.

06 June 2017 11:35 AM # 8

ceriannbrown

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Joined: 2015-02-12 Posts: 2
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Hi there!

Sorry to hear about your troubles. My daughter Amy is 3 and a half almost. She has a leckey mygo chair on a discovery base. We did have the same chair as you prior to this.

I haven’t got any advice as such as our children are all so different. Amy used to pretty much cry ALL the time when we were out and even picking her up involved constant singing and movement. These days she is much better in her chair. We need to take music or ipad everywhere or lots of electronic toys. If she has all of those she is generally appeasable but it is still really hard work at times.

Since getting the wheelchair van she has been more settled and there are less transfers which i think helps. She doesnt like constantly changing equipment.

Also what others said - sometimes, hard as it is… you have to ignore. They do need to learn that they can’t just cry and get constant intervention. Amy can be very sneaky with this as she knows im easily panicked!

I hope you find something that works. It can be really tough especially as they get bigger and harder to carry/keep on lap and so on. Let us know if you find anything that works! xxx

25 July 2017 10:41 PM # 9

Healing Heart

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Alessandra - 22 May 2017 02:43 PM

Hi,
My name is Alessandra and I have a 4 years old son, Lucca. He has Cerebral Palsy.
He stayed at at the hospital for his first 8 months and at home for a long period of time without going out. So, most of the time, he was with us in our lap or in the floor.
He hates to be in the wheelchair. We bought him the Kimba Neo, from Ottobock. It’s well adapted and still, he cry almost all the time… And it happens the same in the car seat.  He screams all the time until we take him out. For him to stay in the car has to have someone besides him, distracting, playing and singing all the time. It’s crazy!!!
I don’t know what else to do!!! He is getting big and we can’t keep holding him all the time. What can I do?
Thanks,
Alessandra

If I had to guess on the problem I’d place money it’s a sensory issue to it.  My son has gone through countless wheelchairs that have failed primarily due to sensory issues with them.  He also prefers the floor still… 8 years later and that’s okay.  They actually have more of a chance of gaining their own sense of mobility, manipulating objects and decreasing chances of skin breakdown/pressure sores etc if they have more time on the floor.  The floor is not a bad thing (event though some therapists condition us to think so).  A lot of alternative therapies actually prefer lots of floor time during the day.  I’d say it could be the something as simple as the fabric, or as challenging as a lateral support that feels uncomfortable.  We had a KidKart that my son hated and always hated and it never got better until we actually just had to get a new wheelchair (which was out of pocket) because there was no way he was ever going to tolerate it.  You also might want to look into dynamic seating options and accessories.  Some children like my son, prefer movement and in a lot of these wheelchairs they actually restrict movement which upsets a child.  Of course getting a brand new wheelchair isn’t always the easiest solution.  But you might want to try a wheelchair liner.  The Geeleo pad is made for typical baby strollers and costs about $30-40, it is soft and great and might be an insert that works well to see if it is a sensory issue to the fabric, it also could be he hates to be tied down or restricted so perhaps if you are strapping down his feet, leave that part out for a while let his legs and feet be free - that was huge for my son to this day I still can’t tie down his feet or legs in any seating system or he screams at the tops of his lungs….

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