Re: advise needed!!

May 11, 2004

Kristy...

This is SO ironic, because just yesterday I emailed an " acquaintance/friend " ,

someone that used to be our neighbor, who we kept in touch with, that I think

her son has some form of an austism spectrum disorder. It took me over a

month to get up the nerve to say something to her!! Her son is 2, a couple

months older than my youngest,Shayne. She wanted them to grow up " buddies " and

we've gotten together every few months for park days or visits. As he's become a

toddler, it was becoming very evident to ME, a mother of 6, and one who has

disabilities, that something is very wrong, but she, being a very young single

mother, seemed to think his behavior was normal. (He has absolutely NO

language, not even " mama " , very little eye contact, he doesn't interact with

other

children, and very little interaction with adults, he walks on his tippy toes,

he spends an abnormal amount of time, almost ALL of his attention is focused on

his hands. He contorts them into strange positions, and watches them...etc)

After attending his birthday party this past weekend, my conscience wouldn't

allow me NOT to say something, because I know how crucial early intervention

can be...I had to risk offending or hurting her, because I was concerned about

her son. It was a hard decision to make! I chose to do it thru email, 1)mos

t of our relationship now is online and 2) I could write all my thoughts out,

think it thru, and make sure I chose words carefully that came across as

lovingly and carefully as I could.

Well... she wasn't offended at all, she actually told me she's had some

concerns, of course her biggest is his lack of language, but the paternal

grandmother convinced her that there was nothing wrong cause it's the way his

father

acted when he was a baby.. " he'll grow out of it " she told her. Sigh. She read

some links I sent her about autism, and told me she doesn't think that's it,

but that he may be hyperactive. I've never seen an iota of hyperactivity from

this child...he walks around in a world of his own, very mellow. I don't

think she knows what a hyper active child looks like!! BUT, she's willing to

take

him to a different pediatrician for another opinion...

Maybe you could ask your friend if shes ever had any genetic testing done on

her daughter...even if you dont mention MDS, if she got the testing done, it

would find it if it was there!! Or if you wanted to specify MDS, maybe if

she saw the photoisland website, with all the various features our kids have (if

shes comparing everything to Tim). She already knows something is wrong

with her child... I think thats a plus. Maybe she'll be more receptive to it

than you think??

Keep us posted!!

Angel

May 11, 2004

Kristy,

You mentioned that this Mom says she does not know what is causing her

daughter's delays. Have you asked this Mom if her pediatrician has run any

tests, such as a blood test, to determine if the cause is genetic or physical in

nature? Maybe you could assure her that by finding the cause of the delays,

she'll know where to start to help her daughter live with or overcome the

hurdles she will undoubtedly face. Knowing what you're facing is half the

battle. Do you know if her pediatrician has ever talked to her about DS? It

seems to me that someone dropped the ball if this poor Mom has gone this long

without a doctor talking to her. If you and the school nurse have noticed signs

then you would think a doctor must have also. Let us know how you make out.

Maureen, mother to Tyler, 10 and , (MDS)

advise needed!!

Hi everyone,

There is a lady in my town whom I am aquainted with. I wouldn't really say

that we are friends, but we do talk and visit every now and then. Our kids have

been in the same class since Kindergarten and now are in 2nd grade.

Her youngest daughter is about 4 yrs old. She was receiving special services

for speech and OT, but now is in a regular class room.(although she really needs

those services) The mother says, she doesn't know why her daughter is delayed,

but to me, it is extremely clear that her daughter has some form of Ds. Perhaps

MDS because the features are not completely there. When I first saw her daughter

3 yrs ago, I thought that maybe the father was Asian, because of the child's

eyes. But, later I met her father, and he is hispanic.(without Asian eyes) The

child also protrudes her tounge mainly when she is tired. She has low muscle

tone. And, to me, she just has the features of someone with Ds.

I spoke with the school nurse the other day about the little girl. And the

school nurse said that the very first time she saw her, she thought the child

had Ds. But, later, everyone told her that she didn't have Ds she just had

delays.

The nurse thinks it would come better from me if I approached the mother about

this.But, I just don't know what to say! If this child does have MDS, then the

parents should know it so they can get the proper services and medical checks

for her.

One day, when the mother was visiting my house, we were talking about her

daughter and her delays.(I chickened out and couldn't tell her that I thought

her daughter had MDS) The mother said, " I know she has delays, but she isn't as

bad as Tim " From the way that she made this comment, I think possibly deep down

she does think her child has MDS, but doesn't want to think about it.

So........What should I do? What should I say? How would you handle this?

HELP!

Kristy

May 11, 2004

Kristy

This is a sticky one. I would play it as you are educating her on MDS, because

that is what parents of children who have MDS do! She needs to hear that not

all children with MDS are like those with DS and that any of us could possibly

have MDS and not know it! I think by taking this approach you would lessen the

chances of offending her. If she is receptive to what you are saying then you

could possibly bring up the fact that you know that she feels there is something

going on with her child and maybe she should just have a blood test to rule MDS

out.

This is just my advice, but I do know that some people take great offense to

people pointing out things about their children. Unfortunately I also know that

some people feel that when there is something wrong with their child it is

ultimately their fault, whether they are miss behaving in public, doing drugs or

have an illness. So she may be struggling with feelings of guilt--which she

should not have. and I honestly believe that we found out about Caden's

Leukemia first, so that when we were told that he had MDS, it would be no big

deal or actually a blessing in disguise. To us it truly was otherwise we were

facing only a 20% survival rate. I know that had we just found out that he had

MDS it would of been devestating to us.

Good Luck and please let us know what you decide or what happens!