Response to many...

[Guest guest]

Fellow listees,

I have typed, deleted and retyped some more, this is what I have come up

with.

I feel like more explaination is needed. When I received the additional

diagnosis of Autism (which now has been changed to PDD/NOS) I went searching

for a group that would provide information from experienced parents that had

already gone down " that road " . This is the description that is listed under

yahoogroups for the group.

" The Down Syndrome & Autistic Spectrum () listserv is a discussion

list for families, parents, and professionals interested in this dual

diagnosis.Topics include medical, educational, and family concerns in a

free, and open forum " (To me that is a " Fact Sharing " description)

Based on that description alone I decided to join.

I introduced myself and and told you a little bit about my daughter and a

few (I believe 2) people responded . I realized that I just needed to hang

back and read the type of information that was being shared and then decide

if I was going to stay on. If I didn't want to be apart of this community

and learn from your experience I wouldn't have come looking for you.

I could tell there was quite a few really close relationships here, and it

would take a little bit before I could comfortably be included in

discussions. I belonged to a group before I moved from Texas that had

similar relationships, they did not build themselves overnight, it took time

and not always did listees agree, but listees never resorted to personal

jabs, even when listees heatedly disagreed politically. I am aware of how

important legislation is for my daughters future it is just not my strong

point, I leave that to the professionals.

I also could also see that there was alot of information to be sifted

through. The " everyday chitchat " that goes back and forth tends to dilute

the information when the messages/responses are not cleaned up. It is

quite overwhelming.

Joan, I appreciate you taking the time to respond to my inquiry. I can

understand the difficult situation you are dealing with, but I prefer not to

overshare, I hope your journey while a difficult one will eventually bring

you some peace. You probably have heard this before, but...one day at a

time, one step at a time, sometimes there is a miracle that we just can't

see.

There were a few post that I took as personal jabs, especially since no one

knows me, because I offered my input. Being that I am a newbee to this I am

NOT familiar with the stories that impacted some of your lives, if I may

make a suggestion, since some of you have been around so long, maybe put a

packet together (could be an electronic one) that shares those stories, that

include those things that you " wish I would have known " . Maybe designate an

unofficial welcome party that would help a newbee navigate how this group

operates, almost a mentorship type role.

Beth, I appreciate you asking about my daughter, she is in a typical

classroom 4-5 hours a day (1st grade). I am personally paying for the aide,

otherwise she would be in sped all day, I believe in inclusion. For me the

diagnosis was an ahha moment, explained alot of her behaviors. I am

currently doing research on perseveration, I think more than anything that

explains alot about Dezrae. She is not on grade level, nor is she reading or

writing but she is verbal and most verbal when High School Musical is on,

she did learn to tell time on the hour with a face clock. She is

participating in class and she mostly has melt downs when she goes into the

sped room for her IEP goal time. She mimics behaviors and the classmates in

the sped class have alot of extreme behaviors. My goal is for her to be in

the regular classroom all day with IEP push in time. That is a going to be

a battle but one I am willing to take on.

Beth and Holly, thank you for the kind words.

I hope this explains my orginal post more.

Nori