Cindy C./ C. and whoever

[Guest guest]

Hello,

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I wish I knew you better to know whether this is a honest try to help or

someone sitting on a high horse. --written by Cindy C.

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To start off with, I will say that this is truly an honest attempt at help,

and there is no horse to be seen.

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The donut cushion you described worked very well the first time but does

not help at all now.

We did request a consultation with the seating clinic for better cushioning

last September but will not have an appointment before next month.

A 3 inch growth spurt since Dec. 1 is only adding to the

instability. written by C.

________________

, I think you have been confused in regards to the cushion I speak

of. It is not the donut cushion. In fact my doc said that for tailbone

injuries the donut is not a good thing because it presses on the tailbone,

they are meant for other things such as haemorrhoids. (besides, aren't the

donut cushions latex???) I don't know why you have to wait to get an

appointment with a seating clinic for better cushioning. What I was told to

do for a cushion was take a piece of upholstery foam (one that you would

find in a couch cushion) and measure to wear my tailbone would be and then

cut out a U shape. This allowed me to sit down and there was little to no

pressure on the tender tailbone. Personally I think the custom cushion may

be terribly

expensive and waste precious time if the goal is to get him back to school

quickly.

Another thing that confuses me about what you've said in regards to 's

tailbone problems, and this may be a little anal of me (pardon the pun) But

which is it? A 2 inch growth spurt since December or a 3 inch growth spurt?

You have mentioned both. You also might want to get the doctor to check

for Thyroid problems because it is not normal to grow that great

amount in such a short time.

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I have not put my child in a " bubble " and I do not believe Jen has either.

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Well this may sound like I am really going to start getting mean but as I

said earlier it is in attempt to help and prevent others from making

mistakes I have made in the past or have seen others make in the past.

I do feel that has her kids in a " bubble " and have actually seen

and her boys. From what I could see of the boys pain levels and

what they were doing (running around the house, jumping into the couch and

beds) compared to the pain levels that says they are experiencing

were quite different. In my eyes it looked like they were pretty normal

kids for their age that may have a few set backs like the rest of us who

have EDS. I hate to say this but I am not the only one who has made this

observation. I am not saying by any means that does not love her

boys to death and would do anything for them. And maybe I am out of line in

saying this stuff but I will once again repeat myself it is all in attempts

to try and help.

I found it very funny that the topic that was being lectured about in my

Psychology class today was PAIN. And what I learned was that " PAIN IS IN

THE BRAIN " The mind is a very powerful thing and I don't think we should

forget that.

I can't say to much about Cindy C. and Dylan because I haven't known them

for very long or met them. But one thing I will say is the doctors are

going to want to hear what Dylan has to say, not mom. At that age, a person

is fully capable of communicating to the doctors what they are thinking,

feeling etc. And from my own personal experiences with doctors I have been

told, " You have a voice and we want to hear what YOU have to say " I

couldn't agree more and what I think is the best about this concept is that

you are 'cutting out the middle man' which means you are leaving less room

for communication errors and otherwise.

So where am I going with all of this you ask? No, it is not just a

vindictive attack on someone or a random act of rudeness... I have a point.

I have had the liberty to give motivational/inspirational speeches to kids

between the grades of 6-12. And in these talks I have discussed my life and

what it is like to live with an invisible disorder, as well as coping with

the disability, depression and suicide. You would be surprised at how many

students I have had come up to me after or send me a card saying " THANK YOU,

I don't feel so alone anymore, and how much I helped or changed their life "

I guess what I am getting at is to be careful and remember that your kids

mental health is just as if not more important than their physical health.

Believe you me you do not want them to suffer with anymore depression than

they have to.

Sincerely,

Jeff