Hi there, im a mum to my 4 year old daugther Melissa who has a severe neuro/genetic condition and i think SPD also plays a major part in her difficulties. Since birth she always loved the constant motion of rocking/rides in her buggy etc but hated when the movement stopped. Shes now 4 & still has the same issues. If you take her out in the buggy she is fine when you're moving but as soon as you stop she instantly starts crying and then has to lifted out for a cuddle to calm her down or instantly start moving the buggy again. Im really at a loss as to how i can help her. Ive tried singing but again, as soon as you stop singing, she starts crying again. Anything that moves then stops causes her sooo much anxiety and upset. I would love to hear from anyone that might be able to give me some pointers or ideas why melissa feels like this. No professionals have ever come across this issue with other children. Please help!
xxx

Is your daughter capable of sitting in a rocking chair and rocking herself safely? I find that really helps with my motion needs. Is she capable of safely spinning in a circle? I used to love doing that as a child. The sensory input felt wonderful.

What about jumping rope? Then she can get the movement at her own pace as well as some exercise.

I have Hypokalemic Periodic Paralysis as well as SPD, so I am familar with several types of Neuromuscular disorders. Although my muscle weakness problems didn't become truly problematic for me until adulthood.

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Can she sing to herself? I used to sing to myself often and still unconsciously humm no matter what else I am doing. I just need the input.

[quote='beck7422' pid='2592' dateline='1332048515']
Is your daughter capable of sitting in a rocking chair and rocking herself safely? I find that really helps with my motion needs. Is she capable of safely spinning in a circle? I used to love doing that as a child. The sensory input felt wonderful.

What about jumping rope? Then she can get the movement at her own pace as well as some exercise.

I have Hypokalemic Periodic Paralysis as well as SPD, so I am familar with several types of Neuromuscular disorders. Although my muscle weakness problems didn't become truly problematic for me until adulthood.

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Hi there, many thanks for your reply My daughter is unable to sit without alot of support as she cant hold her head (think the lack of balance may be a part of her motion problems). She cant walk or talk so alot of activities have to be ruled out. Ive just bought her earphones to see if an ipod makes any difference when any movement stops. She gets so upset when movement stops so something must be really frightening or unsettling, i just wish i new how i could help her as shes unable to tell me anything xxx

I've found if I'm wrapped up in a blanket then its easier on me. Have you tried various things like that?

This may seem like an odd question, but has your daughter gone to a chiropractor? Because of my muscle weakness problems, my muscles are constantly pulling my bones out of alignment. It got so bad, prior to the chiropractor, that I had a lot of vertigo. When I was in a car, I felt like cells of my body were being left behind and when we stopped they would run forward without my body. It was a horrible sensation.

Now that I get my back and neck realigned once a week, I usually only have a little vertigo or other related problems when I need an adjustment. After the adjustment the problem goes away for a few days.

I wonder if your daughter's disability might be playing havock on her muscles, bones, and nerves. That can magnify sensory problems a lot.

My balance has greatly improved since seeing the chiropractor. I still have problems when I have paralysis and weakness attacks (from my Hypokalemic Periodic Paralysis), but a good portion of the time now I can "fake" being a normal person when walking short distances. Long distances (more than 200 feet) are enough to trigger my disability through exhaustion.

(03-20-2012, 03:29 AM)beck7422 Wrote: This may seem like an odd question, but has your daughter gone to a chiropractor? Because of my muscle weakness problems, my muscles are constantly pulling my bones out of alignment. It got so bad, prior to the chiropractor, that I had a lot of vertigo. When I was in a car, I felt like cells of my body were being left behind and when we stopped they would run forward without my body. It was a horrible sensation.

Now that I get my back and neck realigned once a week, I usually only have a little vertigo or other related problems when I need an adjustment. After the adjustment the problem goes away for a few days.

I wonder if your daughter's disability might be playing havock on her muscles, bones, and nerves. That can magnify sensory problems a lot.

My balance has greatly improved since seeing the chiropractor. I still have problems when I have paralysis and weakness attacks (from my Hypokalemic Periodic Paralysis), but a good portion of the time now I can "fake" being a normal person when walking short distances. Long distances (more than 200 feet) are enough to trigger my disability through exhaustion.

Thanks so much the information! yes, she has been going to a chiropractor since she was a baby (much to the disapproval of the hospital!) and i would definately say they've helped to keep her spine as straight as possible and loosen off any tightness around the neck area but it hasnt helped with the 'stopping' episodes yet. Im very interested to hear about the feeling you get when the car stops moving as im sure she must be getting similar sensations. As shes only just turned 4 shes still very young and just cries at all these things. I tried music today when we stopped & it worked for a few minutes but then she got upset again. I usually end up taking her out her buggy for a cuddle coz thats what calms her down but i just wondered if this was the right thing to do or am i actually making things worse by perhaps turning the situation into a behavioural one. Because i dont know how she feels im not sure what the right thing to do is? I definately agree that her disability plays havock with her muscles, bones & nerves. Do you think any kind of medicine would maybe help, ie something to calm her down abit?
Thanks xx

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(03-19-2012, 10:08 PM)Tuttleturtle Wrote: I've found if I'm wrapped up in a blanket then its easier on me. Have you tried various things like that?

Hi there, thanks for your message! no ive not tried wrapping her in a blanket but i will definately give it a go. Can i ask what sensations you feel when, say for example, the car stops moving? Im just trying to get my head round how she might be feeling because she gets so upset by it. Many thanks x

(03-20-2012, 05:44 PM)Lorraine Wrote:

(03-19-2012, 10:08 PM)Tuttleturtle Wrote: I've found if I'm wrapped up in a blanket then its easier on me. Have you tried various things like that?

Hi there, thanks for your message! no ive not tried wrapping her in a blanket but i will definately give it a go. Can i ask what sensations you feel when, say for example, the car stops moving? Im just trying to get my head round how she might be feeling because she gets so upset by it. Many thanks x

It's such a sudden stop its disorienting. My body doesn't want to stop, but it does and its unsure about what's going on. I think it has to do with me having an overactive vestibular sense, but if I give myself other input (deep pressure is best for me, but even a light blanket makes me feel more safe in my body), then its less hard to deal with.

The cuddle is the right thing to do when she is at her most upset due to sensory problems. Many of us like deep pressure hugs (which is basically a cuddle). I find them deeply relaxing and reassuring myself.

A blanket that she could coccoon herself in helps temporarily simulate that deep pressure hug. It isn't as good as a hug, but it comes close enough.

Can you change your driving style to switch to slow stops? It requires more distance between you and the car in front of you. Basically you brake just enough to slow down, but come to a complete stop as rarely as possible. Freeways are easier on me than lights (as long as it isn't Stop N' Go traffic). Stop signs aren't bad as long as there is no other traffic. As a passenger, being driven is even bigger hell than being the driver myself. When I am the driver I can make the car flow to my personal rythym. Sudden stops really take a big toll on me, especially as a passenger.

There are no SPD medications and most of us negatively overreact to medications. It is probably be best to just stick to the medications for your daughter's genetic condition and be extra careful about how she reacts to them.

I have a lot of special food diet requirements, but they are due to my genetic condition (Hypokalemic Periodic Paralysis) and my food allergies. Some Neuromuscular disorders and SPD makes a person more vulnerable to GI troubles. In the long run, it is probably best to have a Nutritionist double check your daughter's nutritional health every few years.

(03-20-2012, 10:51 PM)Tuttleturtle Wrote:

(03-20-2012, 05:44 PM)Lorraine Wrote:

(03-19-2012, 10:08 PM)Tuttleturtle Wrote: I've found if I'm wrapped up in a blanket then its easier on me. Have you tried various things like that?

Hi there, thanks for your message! no ive not tried wrapping her in a blanket but i will definately give it a go. Can i ask what sensations you feel when, say for example, the car stops moving? Im just trying to get my head round how she might be feeling because she gets so upset by it. Many thanks x

It's such a sudden stop its disorienting. My body doesn't want to stop, but it does and its unsure about what's going on. I think it has to do with me having an overactive vestibular sense, but if I give myself other input (deep pressure is best for me, but even a light blanket makes me feel more safe in my body), then its less hard to deal with.

Hey thats great information, thank you so much! i thought maybe the stopping motion was causing some kind of disorientation but to have it confirmed by someone who is going through a similar feeling but can describe it, is such a great help! I will try the blanket tomorrow as im taking her to places with lots of stops & starts so we'll see how it goes! Thanks again, you've been such a great help x

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(03-20-2012, 11:26 PM)beck7422 Wrote: The cuddle is the right thing to do when she is at her most upset due to sensory problems. Many of us like deep pressure hugs (which is basically a cuddle). I find them deeply relaxing and reassuring myself.

A blanket that she could coccoon herself in helps temporarily simulate that deep pressure hug. It isn't as good as a hug, but it comes close enough.

Can you change your driving style to switch to slow stops? It requires more distance between you and the car in front of you. Basically you brake just enough to slow down, but come to a complete stop as rarely as possible. Freeways are easier on me than lights (as long as it isn't Stop N' Go traffic). Stop signs aren't bad as long as there is no other traffic. As a passenger, being driven is even bigger hell than being the driver myself. When I am the driver I can make the car flow to my personal rythym. Sudden stops really take a big toll on me, especially as a passenger.

There are no SPD medications and most of us negatively overreact to medications. It is probably be best to just stick to the medications for your daughter's genetic condition and be extra careful about how she reacts to them.

I have a lot of special food diet requirements, but they are due to my genetic condition (Hypokalemic Periodic Paralysis) and my food allergies. Some Neuromuscular disorders and SPD makes a person more vulnerable to GI troubles. In the long run, it is probably best to have a Nutritionist double check your daughter's nutritional health every few years.

Hi there, wow all this info is sooo helpful, thank you! yes i have noticed that when i stop very slowly in the car she can remain settled and when i actually have to stop at lights or in busy traffic thats when she gets upset. So shes definately experiencing the same kind of thing. I will continue to give her cuddles as these are the most effective. my only problem is when she gets bigger i will struggle to life her in & out of the buggy.

We have a dietician thats sees her regularly as shes on a special milk. She has an unsafe swallow so is fed through a gastrostomy and only has little tasters.

I really feel as though ive gained so much helpful information from this forum. I feel i have more understanding of what the wee souls going through every day & hopefully i will be able to manage it better by keeping her as happy as possible.

Many thanks, you've been such a great help!

Glad to be of help. I know what a nightmare it can be to figure out sensory things on your own. Eventually I stopped telling doctors about it, because they would just think I was making it up. I only now tell them about it when they notice how badly my body overreacts to something as simple as a standard Neurological test. I pass all the standard "signs" of the Neurological test, but I can't easily relax a muscle once it is clenched. Of course there is nothing in the medical tests about that problem so it rarely gets documented. When I clench my muscles, I get trapped in a pain overload that keeps the muscles clenched. My friends have learned to tickle me until the tickling ticks me off so much that I unclench the muscles trying to slap them. It is a rare day I actually connect with that slap since the muscles are weak and inaccurate after they come out of being clenched.