RE: Re: Fetal diagnosis - Long

[Guest guest]

,

I actually like your question and I think you will get various answers.

I can tell you about my son who is an only child also. Also note that

his dad and I divorced in 03/1996 and he has not seen him since.

My son, Colby, has what I consider a mild case of RSS from what I read

on this list. He is almost 13 and of course, he is small for his age,

but does not have any of the other issues that some kids have. He

generally likes to hang out with kids younger than him. I think this is

because the younger kids are more his size, and he has had issues with

kids his own age when it comes to rough-housing. He thinks they are out

to " kill " him because he is not used to the rough play. When he was

around 7 a couple of kids at our church got on top of him while playing

and he truly believes they were trying to suffocate him. I know they

were just playing around, but when you weigh half their size, it's

scary.

Are the kids teased? Now that Colby is in middle school, the kids tease

him about being short and it hurts him. But, it doesn't keep him from

making fun of others himself. (I haven't figured that one out yet.) I

think it must have to do with survival of the fittest. The teasing

however is not enough for him to want to consider growth hormones. (We

have discussed this repeatedly.) As far as the emotional pain, I think

it's just hard for kids to understand that Colby has any type of

condition because he is " normal " in every way but just small. They don't

know that it is a form of dwarfism, the just know to pick on the little

guy. I take him to ish Rite each year and I know in the back of my

mind that the mothers with severely disabled kids look at mine and

think, " why is she here, there's nothing wrong with her kid? " (They

don't really but that is how I feel. I also feel blessed that Colby ONLY

has RSS and not something more severe.)

Are the kids active? Colby has never been much into sports. He does take

taekwondo now and does complain of being tired but I think so of that

has to do with him wanting to stay up too late at night. I can remember

keeping a stroller in my car for years past the date he was " too old "

for it, because he would just get tired like if we went to the mall, or

an outdoor event. His biggest problem in this area right now is not

being able to defend himself. Basically if/when someone physically picks

on him, he cannot hold his own. So he either has to walk away, or try to

fight but to no avail. The principal at his school assures me that it

will get better in high school when the kids realize that each person is

different and that is the way it is supposed to be.

Are the kids fragile? I'm not sure. Colby has never had a broken bone,

but he has been hurt from being hugged too hard. I don't spank him for 2

reasons. The first being there are better ways especially when you have

only one. And the second being that I was afraid that I might break him.

Is our live normal? Yes, considering that I am a single parent with a

" special needs " kid. (Refer to comments about ish Rite) I treat

Colby like I would if he did not have RSS. When he was smaller, I made

ways for him to be independent. I had a ladder to the toilet seat, I had

a sink that hooked over the tub for him to brush his teeth, he has

always been encouraged to climb on the counters to get what he needs, I

put milk in smaller containers that he could manage so that he could

pour his own glass, etc. Our biggest " unnormal " areas are talking about

the need to eat regularly and how it affects your growth, and how to

deal with issues at school when being bullied. These days we are

focusing on responsibility and who to earn more privileges.

I couldn't end this email without a discussion on Colby the person.

Colby has a great sense of humor and his wit is really beginning to

develop. He likes to be around people that are nice. He is a good kid in

general. Right now he is a little strict on right and wrong. He can sure

tell me who the bad kids are at school and the ways in which they are

bad. He can be a bit of a prude when it comes to right and wrong (I am a

bit of the rebellious type myself so I don't know where he gets that

from). He definitely follows the rules and is almost scared to deviate

from them at school. He is kind to others when they are hurt, especially

younger kids. But if someone hurts him or scares him like they did at

the church, he never trusts them again. He is becoming more independent

every day (even at 4 he would get his own breakfast because I had stuff

set up where he could manage it himself). He has had difficulties with

math and speech but he is an A/B student with minimal effort. Although

we do have trying times, I couldn't have asked for a better kid. He is

emotionally maturing nicely for his age and I look forward to the day

when the hormones really kick in. He has actually thanked me and told me

he loved me in public recently (very taboo for a teenager).

If you have any more questions, or want further details, please respond

back.

Regards,

Re: Fetal diagnosis

Thank you and Jodi for the doctor recommendations, and

to everyone who responded to my post. Your advice is

appreciated more than you know.

I think it is the fear of the unknown that is the most difficult

thing

to deal with. Knowing something will be wrong with your baby,

but not knowing what it is, or what to expect.

I know this is a forward and ignorant question, but I'm going to

just jump in and ask it. I hope you'll understand the reason

behind my asking it .

I have read so many stories about the challenges faced by

parents of children with RSS, skeletal dysplasias and growth

issues in general. But I would love to know about your children

themselves. Do RSS kids have energy, can they keep up with the

level of play of other kids, are they quite fragile? Do RSS children

typically attend regular schools? My child will be an only child, no

sibs or even cousins; inotherwords, no built-in support network. I

am so concerned about her having friends. Are other kids

generally accepting? Aside from all the struggles you go through

together, is there a degree of normalcy in your lives?

Again, I apologize for my ignorance, and I truly hope I am not

offending anyone with my questions. I just want to prepare

myself and get a well-rounded picture of the " norm " rather than

simply focus on the negatives.