(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!