RE: Standards for the Use...

[Guest guest]

I am tearing up. You are amazing! And humble...

From: jadziab@...

Sent: Thursday, July 23, 2009 12:05 PM

To: deniseslist

Subject: Standards for the Use...

Firstly, I want to thank everyone that emailed me with support. This obviously is a sensitive and emotional situation because of the risk involved with use, misuse and nonuse. What I originally posted was referencing the absolute language in the original post and then some of the responses to me. I strongly beleive that all parents do what they feel is best for their kids.

I adopted Miki when she was 2.10 yrs old. She had a hearing disorder (which sometimes mimics autism) and spent her first 1 1/2 years in a 3x3 crib which causes "institutional autism" I spent my first few years with her concentrating on the hearing with thought she would grow out of her "institutional autism". I didn't really accept she had Autism until she was 7. I am not a strong woman. I was spitting angry for the first 5 years I had her. It wasn't until I sat at a meeting at the ARC that I realized none of these Mommies prayed for a kid with Autism while pregnant. That's when I started looking for answers. Had I started her on ABA at a young age she probably wouldn't have these behaviors. It took over two years on the Waiver before I got the Behavior Services she really needs now that she has grown into her maladaptive behaviors. I would love to know how to teach her other coping skills, this all takes time and I can only learn so much at a time and I've been learning sign language. Everyone feels if she had more language the behaviors may fade. In order to get her the Cochlear Implants I was told not to sign to her, and now 7 years later she still isn't speaking. She has so many issues other than the Autism.

I am not a saint, had I known Miki had these problems I most likely would have left her in Ukraine. I fell madly in love with her there but there are moments when I consider a one way ticket back for her (not for more than a moment) I know she is mine for a reason, I needed to learn what I've learned over the last 8 years with her. The only way I've been able to cope with the situation is with the support of other parents. This is so damn hard and we so need each other to learn and lean, I guess we are extended family and like family we quibble. It's easy for me to isolate when I'm emotionally or physically bruised and I can email in my pj's. Again, thank you

Mikismom Jayne

[Guest guest]

I think in our own ways we can understand how you feel.. I feel alone and isolated every day of my life. Its not because I treat my son any differently than any other parent to their child. I am tired of seeing him struggle or not be able to do things that kids his age ARE doing. I have spent countless hours in therapy for him....and something isnt right. Why is it taking my son so damn long to concore the things he has been in therapy for??? Noone ever has answers and I know its hard. If you ever want to talk...just to let what you need to out email me ewihlborg@...

To: deniseslist Sent: Thursday, July 23, 2009 12:05:46 PMSubject: Standards for the Use...

Firstly, I want to thank everyone that emailed me with support. This obviously is a sensitive and emotional situation because of the risk involved with use, misuse and nonuse. What I originally posted was referencing the absolute language in the original post and then some of the responses to me. I strongly beleive that all parents do what they feel is best for their kids.

I adopted Miki when she was 2.10 yrs old. She had a hearing disorder (which sometimes mimics autism) and spent her first 1 1/2 years in a 3x3 crib which causes "institutional autism" I spent my first few years with her concentrating on the hearing with thought she would grow out of her "institutional autism". I didn't really accept she had Autism until she was 7. I am not a strong woman. I was spitting angry for the first 5 years I had her. It wasn't until I sat at a meeting at the ARC that I realized none of these Mommies prayed for a kid with Autism while pregnant. That's when I started looking for answers. Had I started her on ABA at a young age she probably wouldn't have these behaviors. It took over two years on the Waiver before I got the Behavior Services she really needs now that she has grown into her maladaptive behaviors. I would love to know how to teach her other coping

skills, this all takes time and I can only learn so much at a time and I've been learning sign language. Everyone feels if she had more language the behaviors may fade. In order to get her the Cochlear Implants I was told not to sign to her, and now 7 years later she still isn't speaking. She has so many issues other than the Autism.

I am not a saint, had I known Miki had these problems I most likely would have left her in Ukraine. I fell madly in love with her there but there are moments when I consider a one way ticket back for her (not for more than a moment) I know she is mine for a reason, I needed to learn what I've learned over the last 8 years with her. The only way I've been able to cope with the situation is with the support of other parents. This is so damn hard and we so need each other to learn and lean, I guess we are extended family and like family we quibble. It's easy for me to isolate when I'm emotionally or physically bruised and I can email in my pj's. Again, thank you

Mikismom Jayne

[Guest guest]

I second you and would like to add…As

parents, we so often dismiss our own needs to take care of our children’s

and as parents of special needs children, it seems as if we cant even get our

basic needs met. We all need to connect and feel understood. It is

part of human nature. But because we don’t fit in the “norm”

many of us isolate (myself included). It is so important for us to stay

connected to one another, provide that support... and, to also reach out

and accept it. That is usually the hard part. Support groups

a can be a wonderful place, I found lots of comfort and resources at the SPEC

group at Dan Marino. This list serve has also been a life

line to me as I am sure it has been to others. Therapy for us

parents or caretakers is something that could be greatly helpful as well.

We have to take care of ourselves if we are to take care of our children.

There is no shame in leaning on one another…we have all been in our rough

patches and I am sure have had thoughts we were not comfortable thinking.

But in the end, we are all here as warriors fighting for our children and our

own sanity. I also would be happy to be there for anyone to lend an

ear. Feel free to connect off line at thecohanes@....

From: sList [mailto:sList ] On Behalf Of Wihlborg

Sent: Saturday, July 25, 2009 3:26

PM

To: sList

Subject: Re:

Standards for the Use...

I think in our own ways we can understand how you feel.. I feel alone

and isolated every day of my life. Its not because I treat my son any

differently than any other parent to their child. I am tired of seeing

him struggle or not be able to do things that kids his age ARE doing. I have

spent countless hours in therapy for him....and something isnt right. Why is it

taking my son so damn long to concore the things he has been in therapy for???

Noone ever has answers and I know its hard. If you ever want to

talk...just to let what you need to out email me ewihlborgaol

From:

" jadziabbellsouth (DOT) net " <jadziabbellsouth (DOT) net>

To: deniseslist

Sent: Thursday, July 23, 2009

12:05:46 PM

Subject: Standards

for the Use...

Firstly, I want to thank everyone that emailed me

with support. This obviously is a sensitive and emotional situation

because of the risk involved with use, misuse and nonuse. What I

originally posted was referencing the absolute language in the original

post and then some of the responses to me. I strongly beleive that all

parents do what they feel is best for their kids.

I adopted Miki when she was 2.10 yrs old. She

had a hearing disorder (which sometimes mimics autism) and spent her first 1

1/2 years in a 3x3 crib which causes " institutional autism " I

spent my first few years with her concentrating on the hearing with thought

she would grow out of her " institutional autism " . I didn't

really accept she had Autism until she was 7. I am not a strong

woman. I was spitting angry for the first 5 years I had her. It

wasn't until I sat at a meeting at the ARC that I realized none of these Mommies

prayed for a kid with Autism while pregnant. That's when I started

looking for answers. Had I started her on ABA at a young age she probably wouldn't

have these behaviors. It took over two years on the Waiver before I got

the Behavior Services she really needs now that she has grown into her

maladaptive behaviors. I would love to know how to teach her other

coping skills, this all takes time and I can only learn so much

at a time and I've been learning sign language. Everyone feels if she

had more language the behaviors may fade. In order to get her the

Cochlear Implants I was told not to sign to her, and now 7 years later she

still isn't speaking. She has so many issues other than the

Autism.

I am not a saint, had I known Miki had these

problems I most likely would have left her in Ukraine. I fell madly in

love with her there but there are moments when I consider a one way

ticket back for her (not for more than a moment) I know she is mine for

a reason, I needed to learn what I've learned over the last 8 years with

her. The only way I've been able to cope with the situation is with the

support of other parents. This is so damn hard and we so need each

other to learn and lean, I guess we are extended family and like family we

quibble. It's easy for me to isolate when I'm emotionally or

physically bruised and I can email in my pj's. Again, thank you

Mikismom Jayne

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