Re: Friend very sad about ds child

[Guest guest]

Stefanie,

This letter explains a lot more of the situation -

Personally I feel she would benefit greatly from a 'mum's' group that get

together for chats. I am part of such a group we first meet when our

children where about 3 yo, the phycologist with the centre we attended

organised this group, and about 6 of the original group still meet with a

few extras who have joined us over the years. We have continued with lunch

once a month over the years, generally we talk about nothing in particular

but we are a great support when dealing with services and family members.

In some ways very similar to this group, the difference being we know each

other on a personal basis.

Sometimes it isn't the 'experts' that are the greatest help but others who

are in thesame/similar position.

I will never forget when one of our Mum's younger daughter was in hospital

with leukaemia - she had many friends visit and got lots of sympathy and no

understanding from these people when talking about hospital

services/doctors etc. Then came a visit from our lunch group - she was

able to let go with her frustrations with staff and we knew where she was

coming from, no misguided sympathy just complete understanding. Now I do

hope this paragraph has come across the way it is meant to - not sure that

putting this into writing (that is by me) that my meaning will come across.

Keep smiling

Jan, mother of Trent 20yo w/DS from the Land DownUnder

[Guest guest]

You know, I think that realistically we all have times of depression about

our children.

I know I do, honestly. My son is adopted. I have worked with the special

needs population for years before we adopted him and we " knew what we were

getting into " ? It's very different parenting. It's very different facing the

fact

day after day that your child ISN'T going to have a " normal " life and ISN'T

going to be accepted in the real world often even by your own family. Whether

you have a " supportive " husband or not. The road to raising your child is long

and hard and even harder if you choose to buck the system and " INCLUDE " your

child. If you do choose that path you are ostracized not only by those who

do not have children like you but those who DO have children like you who don't

chose the path that you do and feel you are wrong.

I know I go through my phases of ups and downs quite regularly. I NEVER

regret having adopted my son, but I will acknowledge that it is an emotional

roller coaster. The rewards of raising Maverick are awesome and I consider him

one of the greatest Blessings ever in my life, but every once in a while, the

road dips down and I have to struggle to find support to find the road that goes

back up again.

And along the way I meet many people who have a very hard time finding that

road that goes back up, but I see how easy it is. One of the worst things I

see is when we, who have sp needs children ourselves, can judge and condemn

parents who also have children with sp needs children, when we should be the

ones

with more compassion and understanding on their behalf. I have seen it on

this list, and I have seen it in my community. And I just don't get it. You'd

think that we, who are walking the walk, would understand it more, wouldn't you?

M.

[Guest guest]

You know, I think that realistically we all have times of depression about

our children.

I know I do, honestly. My son is adopted. I have worked with the special

needs population for years before we adopted him and we " knew what we were

getting into " ? It's very different parenting. It's very different facing the

fact

day after day that your child ISN'T going to have a " normal " life and ISN'T

going to be accepted in the real world often even by your own family. Whether

you have a " supportive " husband or not. The road to raising your child is long

and hard and even harder if you choose to buck the system and " INCLUDE " your

child. If you do choose that path you are ostracized not only by those who

do not have children like you but those who DO have children like you who don't

chose the path that you do and feel you are wrong.

I know I go through my phases of ups and downs quite regularly. I NEVER

regret having adopted my son, but I will acknowledge that it is an emotional

roller coaster. The rewards of raising Maverick are awesome and I consider him

one of the greatest Blessings ever in my life, but every once in a while, the

road dips down and I have to struggle to find support to find the road that goes

back up again.

And along the way I meet many people who have a very hard time finding that

road that goes back up, but I see how easy it is. One of the worst things I

see is when we, who have sp needs children ourselves, can judge and condemn

parents who also have children with sp needs children, when we should be the

ones

with more compassion and understanding on their behalf. I have seen it on

this list, and I have seen it in my community. And I just don't get it. You'd

think that we, who are walking the walk, would understand it more, wouldn't you?

M.

[Guest guest]

Stefanie,

Like I wrote, I am in a similar situation. The big exception I have is the

supportive husband. I do have periods of depression, especially when everyone

else's child seems to be doing so well. It is very hard to have to take on the

roll of sibling as well as parent just so my child has someone to play with

sometimes.

I looked into using Celexa, an antidepressant because I was feeling what she is

feeling. Unfortunately, I had a strong reaction to it because of migraines and

use of Imitrex. I have friends that have used it with good success.

I would suggest a Christian Counselor (not her pastor) to help both of them.

She needs her doctors to come together and help her with her pain. Suggestions

are massage therapy, acupuncture/acupressure, pain meds.

What types of services does her child qualify for? Can she get some respite,

rehabilitation supports, or a personal care aide? Certainly her condition would

qualify her for some extra help.

Let her know we are praying for her. Thank you for wanting to help.

mom to Bridget 12

wife to

in upstate SC

Re: Friend very sad about ds child

Hi everyone:

Thanks to those that gave some positive advice................

I know that there has to be some folks out there that can relate to feeling

like this.............and I was hoping some of yall can tell me what helped

you

get through times like this.................Counseling? medicine? talking to

other parents..........

I guess I haven't made things clear..........

She is crying out for help. She knows that she will need to go to counseling,

but so does her husband...........They both need counseling to form a better

relationship.............

Her pain from her health problems has gotten so bad.............Some of

issues include......disabiling form of arthritis, a not supportive

compassionate

husband (he's very cold), just got diagnosed with skin cancer, her bosses at

work are terrible etc... a lot of stresses...........

She does so many " loving " things for her child with ds......... she IS a

great Outstanding mother..........I do believe that she has accepted her

child,

but not fully...........it's sad for her to see what other typically

developing

children are doing and she's worried about the future. She's very worried and

scared.

Having her " only child " have a disability must be very hard on

anyone..............when you have more than one child and other typically

developing

children I think it's easier for parents to accept. Just my

opinion..............But,

again it comes back to..........having a caring, compassionate husband would

definently help.......I think if he was different things would be

different...........

it's just " at times " she grieves and is sad of things.......

It would be nice if she had a nice supportive husband to help her through

things (give her a hug once in a while)..........not just ignore her and not

help

.................verbal abuse at times can be overwhelming....

How would you feel if you had a NOT supportive rude husband???

Plus health problems of your own

I just thought maybe some of you had some " positive " advice for me to give

her.........

Not to just " bash " the mother...........

Basically what I wanted to know is if anybody has ever used a psycologist to

help with some of the sad grieving feelings? should she request a certain

" type " of physicologist?

What things has helped you cope and accept?

Have any of you been sad and grieve for a long period of time?

I just want her to get the help that she needs...........

any supportive advice would be helpful............

thanks

Stefanie

[Guest guest]

Stefanie,

Like I wrote, I am in a similar situation. The big exception I have is the

supportive husband. I do have periods of depression, especially when everyone

else's child seems to be doing so well. It is very hard to have to take on the

roll of sibling as well as parent just so my child has someone to play with

sometimes.

I looked into using Celexa, an antidepressant because I was feeling what she is

feeling. Unfortunately, I had a strong reaction to it because of migraines and

use of Imitrex. I have friends that have used it with good success.

I would suggest a Christian Counselor (not her pastor) to help both of them.

She needs her doctors to come together and help her with her pain. Suggestions

are massage therapy, acupuncture/acupressure, pain meds.

What types of services does her child qualify for? Can she get some respite,

rehabilitation supports, or a personal care aide? Certainly her condition would

qualify her for some extra help.

Let her know we are praying for her. Thank you for wanting to help.

mom to Bridget 12

wife to

in upstate SC

Re: Friend very sad about ds child

Hi everyone:

Thanks to those that gave some positive advice................

I know that there has to be some folks out there that can relate to feeling

like this.............and I was hoping some of yall can tell me what helped

you

get through times like this.................Counseling? medicine? talking to

other parents..........

I guess I haven't made things clear..........

She is crying out for help. She knows that she will need to go to counseling,

but so does her husband...........They both need counseling to form a better

relationship.............

Her pain from her health problems has gotten so bad.............Some of

issues include......disabiling form of arthritis, a not supportive

compassionate

husband (he's very cold), just got diagnosed with skin cancer, her bosses at

work are terrible etc... a lot of stresses...........

She does so many " loving " things for her child with ds......... she IS a

great Outstanding mother..........I do believe that she has accepted her

child,

but not fully...........it's sad for her to see what other typically

developing

children are doing and she's worried about the future. She's very worried and

scared.

Having her " only child " have a disability must be very hard on

anyone..............when you have more than one child and other typically

developing

children I think it's easier for parents to accept. Just my

opinion..............But,

again it comes back to..........having a caring, compassionate husband would

definently help.......I think if he was different things would be

different...........

it's just " at times " she grieves and is sad of things.......

It would be nice if she had a nice supportive husband to help her through

things (give her a hug once in a while)..........not just ignore her and not

help

.................verbal abuse at times can be overwhelming....

How would you feel if you had a NOT supportive rude husband???

Plus health problems of your own

I just thought maybe some of you had some " positive " advice for me to give

her.........

Not to just " bash " the mother...........

Basically what I wanted to know is if anybody has ever used a psycologist to

help with some of the sad grieving feelings? should she request a certain

" type " of physicologist?

What things has helped you cope and accept?

Have any of you been sad and grieve for a long period of time?

I just want her to get the help that she needs...........

any supportive advice would be helpful............

thanks

Stefanie

[Guest guest]

" How would you feel if you had a NOT supportive rude husband??? "

Hmmmm, let's see.......I divorced him??!!!! LOLOLOLOLOLOL

Actually, it is easier (most of the time) to do it all by myself than to try

to lean on someone who just isn't there for support. At least I know where I

stand! The other day, when the doctors were piling on even more dx's, I did

actually hate him for a moment for not being there. But it passed quickly.

What would he have done?? 1) Gotten angry at the doctor, 2) gotten angry at

me, 3) made a huge scene.

BTW, , two doctors in two days mentioned Tourette's. Remember how we

discussed this not too long ago?? I would really hate to be right about this

one.

Sue single and happy mom to Kate 15 (who is coming home from 5 days in New

York on a choir field trip) and Karrie 9 w/ds and many other issues (Karrie

had her 9th birthday Friday!!)

[Guest guest]

" How would you feel if you had a NOT supportive rude husband??? "

Hmmmm, let's see.......I divorced him??!!!! LOLOLOLOLOLOL

Actually, it is easier (most of the time) to do it all by myself than to try

to lean on someone who just isn't there for support. At least I know where I

stand! The other day, when the doctors were piling on even more dx's, I did

actually hate him for a moment for not being there. But it passed quickly.

What would he have done?? 1) Gotten angry at the doctor, 2) gotten angry at

me, 3) made a huge scene.

BTW, , two doctors in two days mentioned Tourette's. Remember how we

discussed this not too long ago?? I would really hate to be right about this

one.

Sue single and happy mom to Kate 15 (who is coming home from 5 days in New

York on a choir field trip) and Karrie 9 w/ds and many other issues (Karrie

had her 9th birthday Friday!!)

[Guest guest]

Stef:

I apologize if my first response seemed a little hard on the mom. I've

dealt with pain at times (back pain) and believe me it does intensify what ever

negative feelings you are having at the time. Since your friend is in extreme

pain she needs a good pain management plan and probably does need a good

counselor. (Couple counseling would probably be a good addition to the solo

counseling.)

I raised Nick alone from 1993 until 1999 when I married my husband. I had

in February of 2000 and Zachary in January of 2002. There are times

I think Nick and I did better alone and there are others I am so grateful for

having my husband's support. Having two typically developing children that

are so much younger than Nick is both a blessing and a curse. It is a

blessing because as they develop new skills (that Nick hasn't quite mastered) it

encourages Nick to try harder. It's a curse because as they develop new skills

I am forced to admit how much further Nick is behind his typical age peers,

after all, if the 5 and 3 year old are mastering it now doesn't that mean

Nick at 11 is behind, either that or the 5 and 3 year old are geniuses (which I

doubt though who knows ).

I think getting counseling for the family and a good support group where she

can vent frustrations and share her joys is very important. One thing I

still believe though is she has to own her feelings and not place blame on

others. She can only change herself, not her child or her spouse. She can be

their cheerleaders and urge them on to greater things but that is about it.

Does her husband act as her cheerleader or does he just tell her to 'get over

it?' If it is the second, perhaps a good counselor can point out to him ways

to be her cheerleader. Has she tried asking him for what she needs as a way

of support? If her biggest times of depression occur when she is in the most

pain, then I would think pain management would be a priority. Once the pain

is under control she will be able to think more clearly.

Cari

[Guest guest]

Stef:

I apologize if my first response seemed a little hard on the mom. I've

dealt with pain at times (back pain) and believe me it does intensify what ever

negative feelings you are having at the time. Since your friend is in extreme

pain she needs a good pain management plan and probably does need a good

counselor. (Couple counseling would probably be a good addition to the solo

counseling.)

I raised Nick alone from 1993 until 1999 when I married my husband. I had

in February of 2000 and Zachary in January of 2002. There are times

I think Nick and I did better alone and there are others I am so grateful for

having my husband's support. Having two typically developing children that

are so much younger than Nick is both a blessing and a curse. It is a

blessing because as they develop new skills (that Nick hasn't quite mastered) it

encourages Nick to try harder. It's a curse because as they develop new skills

I am forced to admit how much further Nick is behind his typical age peers,

after all, if the 5 and 3 year old are mastering it now doesn't that mean

Nick at 11 is behind, either that or the 5 and 3 year old are geniuses (which I

doubt though who knows ).

I think getting counseling for the family and a good support group where she

can vent frustrations and share her joys is very important. One thing I

still believe though is she has to own her feelings and not place blame on

others. She can only change herself, not her child or her spouse. She can be

their cheerleaders and urge them on to greater things but that is about it.

Does her husband act as her cheerleader or does he just tell her to 'get over

it?' If it is the second, perhaps a good counselor can point out to him ways

to be her cheerleader. Has she tried asking him for what she needs as a way

of support? If her biggest times of depression occur when she is in the most

pain, then I would think pain management would be a priority. Once the pain

is under control she will be able to think more clearly.

Cari

[Guest guest]

I have just read this thread.

Here is my take.

I have a disability. I have HMS and now in the process of trying to get

disability for me. My dh didn't accept Brit for YEARS. I accepted her right

away. Granted at her birth I wasn't as bad as I am now. However, I did know

that I was going to get worse and that what I have is genetic. I also worked at

Mcs with my DH. We were living with my parents. Life wasn't peaches and

cream. Life really hasn't ever been peaches and cream. Yet, as always, I was

pragmatic. I was handed a baby and i needed to deal with that. Someone needed

to deal with that. It didn't matter how much pain I was in, it still doesn't

matter how much pain I was in. I needed to deal with it. Yes, I am a cronic

depressant and yes, I tried the suicide route. She needs to realise that the

depression is all part of the cronic pain and NOT other circs. I have 4 kids

beth - 13 with HMS like me

Brit - 12 with Down Syndrome

Willie 11 with ADHD and he was FT with reflux at Birth as well as high tone and

other symptoms from the fall I had and his Fetal Distress. The fall was because

of MY disability.

Jessie - 22 months who seems to be ok(HMS isn't dxed until a later date)

These are contibutors to my depression, but they don't give a right to blame

them or not accept them for who they are.

beth - 13; champion at 1600m and 2400m run, band and soccer

Brit - 12; champion basketball player and wanna be musician

Willie - 11; soon to be in band and track as well

Jessie - 22m; champion at getting in and out of chairs, climbing, and all around

nut.

Me, I'm just a mom trying to get by. Acknowleding that i can't spell and that I

have depression, cronic pain, and i have no one to blame but myself. I

constantly over due and neglect my pain management excersizes and meds.

Is helpful? NOT. Most of the time he complains because i go to the doc too

much and for silly stuff(his words), I take too many different drugs, and I have

Brit into the doc to often. Does he help clean when I don't feel good, NOT.

Does he ever take Brit or anyone else to the Doc? NOT. Don't put the blame on

the dh. Make sure you understand where it should fall. She needs help and it

sounds like it is up to her to wake up and smell the coffee about it. I know

how hard it is the manage depression and cronic pain, but the onus is still

squarely on her shoulders to understand as much about her disability as she does

about her daughter's disability.

Sorry I couldn't dredge up more sympathy, but that isn't very helpful to people

like me.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~

[Guest guest]

I have just read this thread.

Here is my take.

I have a disability. I have HMS and now in the process of trying to get

disability for me. My dh didn't accept Brit for YEARS. I accepted her right

away. Granted at her birth I wasn't as bad as I am now. However, I did know

that I was going to get worse and that what I have is genetic. I also worked at

Mcs with my DH. We were living with my parents. Life wasn't peaches and

cream. Life really hasn't ever been peaches and cream. Yet, as always, I was

pragmatic. I was handed a baby and i needed to deal with that. Someone needed

to deal with that. It didn't matter how much pain I was in, it still doesn't

matter how much pain I was in. I needed to deal with it. Yes, I am a cronic

depressant and yes, I tried the suicide route. She needs to realise that the

depression is all part of the cronic pain and NOT other circs. I have 4 kids

beth - 13 with HMS like me

Brit - 12 with Down Syndrome

Willie 11 with ADHD and he was FT with reflux at Birth as well as high tone and

other symptoms from the fall I had and his Fetal Distress. The fall was because

of MY disability.

Jessie - 22 months who seems to be ok(HMS isn't dxed until a later date)

These are contibutors to my depression, but they don't give a right to blame

them or not accept them for who they are.

beth - 13; champion at 1600m and 2400m run, band and soccer

Brit - 12; champion basketball player and wanna be musician

Willie - 11; soon to be in band and track as well

Jessie - 22m; champion at getting in and out of chairs, climbing, and all around

nut.

Me, I'm just a mom trying to get by. Acknowleding that i can't spell and that I

have depression, cronic pain, and i have no one to blame but myself. I

constantly over due and neglect my pain management excersizes and meds.

Is helpful? NOT. Most of the time he complains because i go to the doc too

much and for silly stuff(his words), I take too many different drugs, and I have

Brit into the doc to often. Does he help clean when I don't feel good, NOT.

Does he ever take Brit or anyone else to the Doc? NOT. Don't put the blame on

the dh. Make sure you understand where it should fall. She needs help and it

sounds like it is up to her to wake up and smell the coffee about it. I know

how hard it is the manage depression and cronic pain, but the onus is still

squarely on her shoulders to understand as much about her disability as she does

about her daughter's disability.

Sorry I couldn't dredge up more sympathy, but that isn't very helpful to people

like me.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~

[Guest guest]

Just wanted to add that I do sympathise. BUT turn that sympathy to help by

going to appointments with her(her own as well as her daughters), help her clean

around the house, set up a low maintenance flower garden, help her cook, listen

to her unload the stress, and just generally BE THERE. There is no magic wand

that will " fix' the situation. Find out what makes her tick and help her to

achieve her goals. Be the spouse she needs. I don't know what I would have

done without my mom. She was there for me to complain to, she helped me with

thinking things through. And she helped me realize when I needed to go back to

the doc and get more prozac and I did the same for her.

She lovingly told me earlier this year that she finally understands what I have

been going through since I was 3. She now has arthritis and I have had it for

over 5 years and have had the joint pain since i was a baby.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~

[Guest guest]

Just wanted to add that I do sympathise. BUT turn that sympathy to help by

going to appointments with her(her own as well as her daughters), help her clean

around the house, set up a low maintenance flower garden, help her cook, listen

to her unload the stress, and just generally BE THERE. There is no magic wand

that will " fix' the situation. Find out what makes her tick and help her to

achieve her goals. Be the spouse she needs. I don't know what I would have

done without my mom. She was there for me to complain to, she helped me with

thinking things through. And she helped me realize when I needed to go back to

the doc and get more prozac and I did the same for her.

She lovingly told me earlier this year that she finally understands what I have

been going through since I was 3. She now has arthritis and I have had it for

over 5 years and have had the joint pain since i was a baby.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~

[Guest guest]

In a message dated 5/8/2005 11:05:14 PM Eastern Daylight Time,

mikeandstef2000@... writes:

> How would you feel if you had a NOT supportive rude husband???

> Plus health problems of your own

>

Well, I'm single. So no rude husband around (for better or for worse)! I do

have an extended family who tend to be extremely critical of how I'm raising

him. They tend to alternate between treating him like a Martian and not

understanding why he can't be more like other kids.

Health problems of my one? Yes, Two types of arthritis, along with a

variety of other problems I don't care to list right now. I'm more caught up in

his

health problems which include diabetes, asthma, frequent ear infections which

have lead in the past to severe bouts croup and pneumonia. The drugs for the

asthma, croup and pneumonia send his blood sugars sky high. Lima is my only

child.

Instead about being SAD about these health issues, I'm glad he doesn't have

OTHERS that many of the parents on this list struggle with.

> I just thought maybe some of you had some " positive " advice for me to give

> her.........

> Not to just " bash " the mother...........

I would never say to the mom directly what I've said to you, but since you

don't have a child with DS you may not understand that this sadness is not

something to be reinforced by giving her your pity.

> Basically what I wanted to know is if anybody has ever used a psycologist

> to

> help with some of the sad grieving feelings? should she request a certain

> " type " of physicologist?

>

> What things has helped you cope and accept?

>

> Have any of you been sad and grieve for a long period of time?

There are different kinds of depression. One is situational -- comes and

goes, part of life. I think she has REAL, i.e., clinical depression issues and

she's blaming it on her child's condition. As others have tried to get across,

sadness can be normal. Eleven years worth is not.

So the question is, what would you tell any friend of yours who is that

unhappy -- regardless of any condition her child might have?

Kathy, Liam's Mom (7, Down syndrome, Asthma, Type 1 Diabetes (dx 11/04))

[Guest guest]

In a message dated 5/8/2005 11:05:14 PM Eastern Daylight Time,

mikeandstef2000@... writes:

> How would you feel if you had a NOT supportive rude husband???

> Plus health problems of your own

>

Well, I'm single. So no rude husband around (for better or for worse)! I do

have an extended family who tend to be extremely critical of how I'm raising

him. They tend to alternate between treating him like a Martian and not

understanding why he can't be more like other kids.

Health problems of my one? Yes, Two types of arthritis, along with a

variety of other problems I don't care to list right now. I'm more caught up in

his

health problems which include diabetes, asthma, frequent ear infections which

have lead in the past to severe bouts croup and pneumonia. The drugs for the

asthma, croup and pneumonia send his blood sugars sky high. Lima is my only

child.

Instead about being SAD about these health issues, I'm glad he doesn't have

OTHERS that many of the parents on this list struggle with.

> I just thought maybe some of you had some " positive " advice for me to give

> her.........

> Not to just " bash " the mother...........

I would never say to the mom directly what I've said to you, but since you

don't have a child with DS you may not understand that this sadness is not

something to be reinforced by giving her your pity.

> Basically what I wanted to know is if anybody has ever used a psycologist

> to

> help with some of the sad grieving feelings? should she request a certain

> " type " of physicologist?

>

> What things has helped you cope and accept?

>

> Have any of you been sad and grieve for a long period of time?

There are different kinds of depression. One is situational -- comes and

goes, part of life. I think she has REAL, i.e., clinical depression issues and

she's blaming it on her child's condition. As others have tried to get across,

sadness can be normal. Eleven years worth is not.

So the question is, what would you tell any friend of yours who is that

unhappy -- regardless of any condition her child might have?

Kathy, Liam's Mom (7, Down syndrome, Asthma, Type 1 Diabetes (dx 11/04))

[Guest guest]

ok I may just be spacing out here but what is HMS??

Re: Friend very sad about ds child

>

>

> I have just read this thread.

>

>

>

> Here is my take.

>

>

>

> I have a disability. I have HMS and now in the process of trying to get

> disability for me. My dh didn't accept Brit for YEARS. I accepted her

> right away. Granted at her birth I wasn't as bad as I am now. However, I

> did know that I was going to get worse and that what I have is genetic. I

> also worked at Mcs with my DH. We were living with my parents.

> Life wasn't peaches and cream. Life really hasn't ever been peaches and

> cream. Yet, as always, I was pragmatic. I was handed a baby and i needed

> to deal with that. Someone needed to deal with that. It didn't matter

> how much pain I was in, it still doesn't matter how much pain I was in.

> I needed to deal with it. Yes, I am a cronic depressant and yes, I tried

> the suicide route. She needs to realise that the depression is all part

> of the cronic pain and NOT other circs. I have 4 kids

>

> beth - 13 with HMS like me

>

> Brit - 12 with Down Syndrome

>

> Willie 11 with ADHD and he was FT with reflux at Birth as well as high

> tone and other symptoms from the fall I had and his Fetal Distress. The

> fall was because of MY disability.

>

> Jessie - 22 months who seems to be ok(HMS isn't dxed until a later date)

>

>

>

> These are contibutors to my depression, but they don't give a right to

> blame them or not accept them for who they are.

>

>

>

> beth - 13; champion at 1600m and 2400m run, band and soccer

>

> Brit - 12; champion basketball player and wanna be musician

>

> Willie - 11; soon to be in band and track as well

>

> Jessie - 22m; champion at getting in and out of chairs, climbing, and all

> around nut.

>

> Me, I'm just a mom trying to get by. Acknowleding that i can't spell and

> that I have depression, cronic pain, and i have no one to blame but

> myself. I constantly over due and neglect my pain management excersizes

> and meds.

>

>

>

> Is helpful? NOT. Most of the time he complains because i go to the

> doc too much and for silly stuff(his words), I take too many different

> drugs, and I have Brit into the doc to often. Does he help clean when I

> don't feel good, NOT. Does he ever take Brit or anyone else to the Doc?

> NOT. Don't put the blame on the dh. Make sure you understand where it

> should fall. She needs help and it sounds like it is up to her to wake up

> and smell the coffee about it. I know how hard it is the manage

> depression and cronic pain, but the onus is still squarely on her

> shoulders to understand as much about her disability as she does about her

> daughter's disability.

>

>

>

> Sorry I couldn't dredge up more sympathy, but that isn't very helpful to

> people like me.

>

>

>

> Hugs

>

> Beth

>

>

>

>

>

>

> http://www.tracheostomy.com/trachkids/kids2/brittany.htm

>

>

> I am the " special needs " child. I am your teacher. If you allow me, I will

> teach you what is really important in life. I will give you and teach you

> unconditional love. I gift you with my innocent trust and my total

> dependency. I teach you about how precious this life is and about not

> taking things for granted. I teach you about forgetting your own needs and

> desires and dreams. I teach you giving. Most of all, I teach you hope and

> faith. ~Author Unknown~

>

>

>

>

[Guest guest]

ok I may just be spacing out here but what is HMS??

Re: Friend very sad about ds child

>

>

> I have just read this thread.

>

>

>

> Here is my take.

>

>

>

> I have a disability. I have HMS and now in the process of trying to get

> disability for me. My dh didn't accept Brit for YEARS. I accepted her

> right away. Granted at her birth I wasn't as bad as I am now. However, I

> did know that I was going to get worse and that what I have is genetic. I

> also worked at Mcs with my DH. We were living with my parents.

> Life wasn't peaches and cream. Life really hasn't ever been peaches and

> cream. Yet, as always, I was pragmatic. I was handed a baby and i needed

> to deal with that. Someone needed to deal with that. It didn't matter

> how much pain I was in, it still doesn't matter how much pain I was in.

> I needed to deal with it. Yes, I am a cronic depressant and yes, I tried

> the suicide route. She needs to realise that the depression is all part

> of the cronic pain and NOT other circs. I have 4 kids

>

> beth - 13 with HMS like me

>

> Brit - 12 with Down Syndrome

>

> Willie 11 with ADHD and he was FT with reflux at Birth as well as high

> tone and other symptoms from the fall I had and his Fetal Distress. The

> fall was because of MY disability.

>

> Jessie - 22 months who seems to be ok(HMS isn't dxed until a later date)

>

>

>

> These are contibutors to my depression, but they don't give a right to

> blame them or not accept them for who they are.

>

>

>

> beth - 13; champion at 1600m and 2400m run, band and soccer

>

> Brit - 12; champion basketball player and wanna be musician

>

> Willie - 11; soon to be in band and track as well

>

> Jessie - 22m; champion at getting in and out of chairs, climbing, and all

> around nut.

>

> Me, I'm just a mom trying to get by. Acknowleding that i can't spell and

> that I have depression, cronic pain, and i have no one to blame but

> myself. I constantly over due and neglect my pain management excersizes

> and meds.

>

>

>

> Is helpful? NOT. Most of the time he complains because i go to the

> doc too much and for silly stuff(his words), I take too many different

> drugs, and I have Brit into the doc to often. Does he help clean when I

> don't feel good, NOT. Does he ever take Brit or anyone else to the Doc?

> NOT. Don't put the blame on the dh. Make sure you understand where it

> should fall. She needs help and it sounds like it is up to her to wake up

> and smell the coffee about it. I know how hard it is the manage

> depression and cronic pain, but the onus is still squarely on her

> shoulders to understand as much about her disability as she does about her

> daughter's disability.

>

>

>

> Sorry I couldn't dredge up more sympathy, but that isn't very helpful to

> people like me.

>

>

>

> Hugs

>

> Beth

>

>

>

>

>

>

> http://www.tracheostomy.com/trachkids/kids2/brittany.htm

>

>

> I am the " special needs " child. I am your teacher. If you allow me, I will

> teach you what is really important in life. I will give you and teach you

> unconditional love. I gift you with my innocent trust and my total

> dependency. I teach you about how precious this life is and about not

> taking things for granted. I teach you about forgetting your own needs and

> desires and dreams. I teach you giving. Most of all, I teach you hope and

> faith. ~Author Unknown~

>

>

>

>

[Guest guest]

Stef,

I'm sorry, I just don't have the patience to deal with people in situations

that they won't remove themselves from. 11 years is a long time to complain

and do nothing about. Sounds like she will be moving in a more positive

direction now, which is good.

She needs to ask for a grief and loss therapist. She also needs some " me "

time - every mother does. There are plenty of people with illnesses that

learn to make lemonaid with the lemons they've been dealt with.

I wouldn't get too wrapped up in her issues - be her friend, yes, but don't

take responsibility for what she needs to do. It will drain you if you do.

Re: Friend very sad about ds child

> Hi everyone:

>

> Thanks to those that gave some positive advice................

>

> I know that there has to be some folks out there that can relate to

feeling

> like this.............and I was hoping some of yall can tell me what

helped you

> get through times like this.................Counseling? medicine? talking

to

> other parents..........

>

> I guess I haven't made things clear..........

>

> She is crying out for help. She knows that she will need to go to

counseling,

> but so does her husband...........They both need counseling to form a

better

> relationship.............

>

> Her pain from her health problems has gotten so bad.............Some of

> issues include......disabiling form of arthritis, a not supportive

compassionate

> husband (he's very cold), just got diagnosed with skin cancer, her bosses

at

> work are terrible etc... a lot of stresses...........

>

> She does so many " loving " things for her child with ds......... she IS a

> great Outstanding mother..........I do believe that she has accepted her

child,

> but not fully...........it's sad for her to see what other typically

developing

> children are doing and she's worried about the future. She's very worried

and

> scared.

>

> Having her " only child " have a disability must be very hard on

> anyone..............when you have more than one child and other typically

developing

> children I think it's easier for parents to accept. Just my

opinion..............But,

> again it comes back to..........having a caring, compassionate husband

would

> definently help.......I think if he was different things would be

> different...........

>

> it's just " at times " she grieves and is sad of things.......

> It would be nice if she had a nice supportive husband to help her through

> things (give her a hug once in a while)..........not just ignore her and

not help

> .................verbal abuse at times can be overwhelming....

>

> How would you feel if you had a NOT supportive rude husband???

> Plus health problems of your own

>

> I just thought maybe some of you had some " positive " advice for me to give

> her.........

> Not to just " bash " the mother...........

>

> Basically what I wanted to know is if anybody has ever used a psycologist

to

> help with some of the sad grieving feelings? should she request a certain

> " type " of physicologist?

>

> What things has helped you cope and accept?

>

> Have any of you been sad and grieve for a long period of time?

>

> I just want her to get the help that she needs...........

>

> any supportive advice would be helpful............

>

> thanks

> Stefanie

>

>

>

>

[Guest guest]

Stef,

I'm sorry, I just don't have the patience to deal with people in situations

that they won't remove themselves from. 11 years is a long time to complain

and do nothing about. Sounds like she will be moving in a more positive

direction now, which is good.

She needs to ask for a grief and loss therapist. She also needs some " me "

time - every mother does. There are plenty of people with illnesses that

learn to make lemonaid with the lemons they've been dealt with.

I wouldn't get too wrapped up in her issues - be her friend, yes, but don't

take responsibility for what she needs to do. It will drain you if you do.

Re: Friend very sad about ds child

> Hi everyone:

>

> Thanks to those that gave some positive advice................

>

> I know that there has to be some folks out there that can relate to

feeling

> like this.............and I was hoping some of yall can tell me what

helped you

> get through times like this.................Counseling? medicine? talking

to

> other parents..........

>

> I guess I haven't made things clear..........

>

> She is crying out for help. She knows that she will need to go to

counseling,

> but so does her husband...........They both need counseling to form a

better

> relationship.............

>

> Her pain from her health problems has gotten so bad.............Some of

> issues include......disabiling form of arthritis, a not supportive

compassionate

> husband (he's very cold), just got diagnosed with skin cancer, her bosses

at

> work are terrible etc... a lot of stresses...........

>

> She does so many " loving " things for her child with ds......... she IS a

> great Outstanding mother..........I do believe that she has accepted her

child,

> but not fully...........it's sad for her to see what other typically

developing

> children are doing and she's worried about the future. She's very worried

and

> scared.

>

> Having her " only child " have a disability must be very hard on

> anyone..............when you have more than one child and other typically

developing

> children I think it's easier for parents to accept. Just my

opinion..............But,

> again it comes back to..........having a caring, compassionate husband

would

> definently help.......I think if he was different things would be

> different...........

>

> it's just " at times " she grieves and is sad of things.......

> It would be nice if she had a nice supportive husband to help her through

> things (give her a hug once in a while)..........not just ignore her and

not help

> .................verbal abuse at times can be overwhelming....

>

> How would you feel if you had a NOT supportive rude husband???

> Plus health problems of your own

>

> I just thought maybe some of you had some " positive " advice for me to give

> her.........

> Not to just " bash " the mother...........

>

> Basically what I wanted to know is if anybody has ever used a psycologist

to

> help with some of the sad grieving feelings? should she request a certain

> " type " of physicologist?

>

> What things has helped you cope and accept?

>

> Have any of you been sad and grieve for a long period of time?

>

> I just want her to get the help that she needs...........

>

> any supportive advice would be helpful............

>

> thanks

> Stefanie

>

>

>

>

[Guest guest]

, ditto to the husband!!! I handle everything but he is there for the

major things like his heart

surgery oral ear nose and throat and everything from his diabetes to lyme.

But on a every day to

day he is not there for school or doctors appointments ect.. Supportive he

is but I'm the only one

who is there 24/7. There are some days I wonder if he could ever do it

without me and our 3 children!!

Making insulin giving vitamins holding down the fort.. Emotional support I

have him... Sometimes I wonder

what would happen if I wasn't around??? luv lisa

-- Re: Friend very sad about ds child

Hi all,

I have decided to weigh in on this from a different perspective. I have an

only child who happens to have ds. This was God's plan and not mine. I

also have a hubby who did not want to adopt. That's ok, we all have

different callings. It has been very hard and extremely lonely at times. I

wouldn't trade her for the world. My husband accepted her disability at

birth. I sought out the services to help her. Eventually I too accepted

her.

Having a husband that accepts a disability doesn't speak to the whole issue.

How supportive is he? Mine comes to meetings and supports what I do. I

handle all the therapies, playdates, trying to make friends, school issues..

you get the picture. Hubby supports me and is a great sounding board.

In this woman's case that may not have been true. She needs support,

prayers, therapy and probably a break. I get to go away for a weekend every

year as well as conferences I choose to attend. Hubby takes care of Bridget

including dealing with her period. Maybe she has no famliy around. Maybe

her family does not accept the child.

It can get very lonely and tiring being your childs sdvocate, mother and

playmate just to name a few. I sure hope she gets the help and support she

needs.

mom to Bridget 12

wife to

in upstate SC

[Guest guest]

Very well said!! lisa

-- Re: Friend very sad about ds child

You know, I think that realistically we all have times of depression about

our children.

I know I do, honestly. My son is adopted. I have worked with the special

needs population for years before we adopted him and we " knew what we were

getting into " ? It's very different parenting. It's very different facing

the fact

day after day that your child ISN'T going to have a " normal " life and ISN'T

going to be accepted in the real world often even by your own family.

Whether

you have a " supportive " husband or not. The road to raising your child is

long

and hard and even harder if you choose to buck the system and " INCLUDE " your

child. If you do choose that path you are ostracized not only by those who

do not have children like you but those who DO have children like you who

don't

chose the path that you do and feel you are wrong.

I know I go through my phases of ups and downs quite regularly. I NEVER

regret having adopted my son, but I will acknowledge that it is an emotional

roller coaster. The rewards of raising Maverick are awesome and I consider

him

one of the greatest Blessings ever in my life, but every once in a while,

the

road dips down and I have to struggle to find support to find the road that

goes

back up again.

And along the way I meet many people who have a very hard time finding that

road that goes back up, but I see how easy it is. One of the worst things I

see is when we, who have sp needs children ourselves, can judge and condemn

parents who also have children with sp needs children, when we should be the

ones

with more compassion and understanding on their behalf. I have seen it on

this list, and I have seen it in my community. And I just don't get it.

You'd

think that we, who are walking the walk, would understand it more, wouldn't

you?

M.

[Guest guest]

Very well said!! lisa

-- Re: Friend very sad about ds child

You know, I think that realistically we all have times of depression about

our children.

I know I do, honestly. My son is adopted. I have worked with the special

needs population for years before we adopted him and we " knew what we were

getting into " ? It's very different parenting. It's very different facing

the fact

day after day that your child ISN'T going to have a " normal " life and ISN'T

going to be accepted in the real world often even by your own family.

Whether

you have a " supportive " husband or not. The road to raising your child is

long

and hard and even harder if you choose to buck the system and " INCLUDE " your

child. If you do choose that path you are ostracized not only by those who

do not have children like you but those who DO have children like you who

don't

chose the path that you do and feel you are wrong.

I know I go through my phases of ups and downs quite regularly. I NEVER

regret having adopted my son, but I will acknowledge that it is an emotional

roller coaster. The rewards of raising Maverick are awesome and I consider

him

one of the greatest Blessings ever in my life, but every once in a while,

the

road dips down and I have to struggle to find support to find the road that

goes

back up again.

And along the way I meet many people who have a very hard time finding that

road that goes back up, but I see how easy it is. One of the worst things I

see is when we, who have sp needs children ourselves, can judge and condemn

parents who also have children with sp needs children, when we should be the

ones

with more compassion and understanding on their behalf. I have seen it on

this list, and I have seen it in my community. And I just don't get it.

You'd

think that we, who are walking the walk, would understand it more, wouldn't

you?

M.

[Guest guest]

I don't know how I'd be if I didn't have the support of my husband. He was the

one I would have picked to break when we were told Bryce had ds - but I was the

one who shattered - Somehow we got through those first few months and I'm so

glad that he was there to talk to - especially to listen without me having to

explain what I meant - You know, the blunt, crude comments and question that you

wouldn't say out loud to anyone? (The ones that social services could make a

case about)

I'm so fortunate that having our son had really brought us closer and brought a

lot of things into a better perspective. I do all the EI, doctor appointments

and school myself but we have a small business and a farm to run - so he will

come if I ask but I'd rather have him get his work done and not be so stressed

on what he's getting behind on.

I got to hand it to those who are journing this path on their own because I know

how hard it is with someone - I know it would be a lot harder without him.

Mandy

" rloree@... " <rloree@...> wrote:

, ditto to the husband!!! I handle everything but he is there for the

major things like his heart

surgery oral ear nose and throat and everything from his diabetes to lyme.

But on a every day to

day he is not there for school or doctors appointments ect.. Supportive he

is but I'm the only one

who is there 24/7. There are some days I wonder if he could ever do it

without me and our 3 children!!

Making insulin giving vitamins holding down the fort.. Emotional support I

have him... Sometimes I wonder

what would happen if I wasn't around??? luv lisa

-- Re: Friend very sad about ds child

Hi all,

I have decided to weigh in on this from a different perspective. I have an

only child who happens to have ds. This was God's plan and not mine. I

also have a hubby who did not want to adopt. That's ok, we all have

different callings. It has been very hard and extremely lonely at times. I

wouldn't trade her for the world. My husband accepted her disability at

birth. I sought out the services to help her. Eventually I too accepted

her.

Having a husband that accepts a disability doesn't speak to the whole issue.

How supportive is he? Mine comes to meetings and supports what I do. I

handle all the therapies, playdates, trying to make friends, school issues..

you get the picture. Hubby supports me and is a great sounding board.

In this woman's case that may not have been true. She needs support,

prayers, therapy and probably a break. I get to go away for a weekend every

year as well as conferences I choose to attend. Hubby takes care of Bridget

including dealing with her period. Maybe she has no famliy around. Maybe

her family does not accept the child.

It can get very lonely and tiring being your childs sdvocate, mother and

playmate just to name a few. I sure hope she gets the help and support she

needs.

mom to Bridget 12

wife to

in upstate SC

[Guest guest]

I don't know how I'd be if I didn't have the support of my husband. He was the

one I would have picked to break when we were told Bryce had ds - but I was the

one who shattered - Somehow we got through those first few months and I'm so

glad that he was there to talk to - especially to listen without me having to

explain what I meant - You know, the blunt, crude comments and question that you

wouldn't say out loud to anyone? (The ones that social services could make a

case about)

I'm so fortunate that having our son had really brought us closer and brought a

lot of things into a better perspective. I do all the EI, doctor appointments

and school myself but we have a small business and a farm to run - so he will

come if I ask but I'd rather have him get his work done and not be so stressed

on what he's getting behind on.

I got to hand it to those who are journing this path on their own because I know

how hard it is with someone - I know it would be a lot harder without him.

Mandy

" rloree@... " <rloree@...> wrote:

, ditto to the husband!!! I handle everything but he is there for the

major things like his heart

surgery oral ear nose and throat and everything from his diabetes to lyme.

But on a every day to

day he is not there for school or doctors appointments ect.. Supportive he

is but I'm the only one

who is there 24/7. There are some days I wonder if he could ever do it

without me and our 3 children!!

Making insulin giving vitamins holding down the fort.. Emotional support I

have him... Sometimes I wonder

what would happen if I wasn't around??? luv lisa

-- Re: Friend very sad about ds child

Hi all,

I have decided to weigh in on this from a different perspective. I have an

only child who happens to have ds. This was God's plan and not mine. I

also have a hubby who did not want to adopt. That's ok, we all have

different callings. It has been very hard and extremely lonely at times. I

wouldn't trade her for the world. My husband accepted her disability at

birth. I sought out the services to help her. Eventually I too accepted

her.

Having a husband that accepts a disability doesn't speak to the whole issue.

How supportive is he? Mine comes to meetings and supports what I do. I

handle all the therapies, playdates, trying to make friends, school issues..

you get the picture. Hubby supports me and is a great sounding board.

In this woman's case that may not have been true. She needs support,

prayers, therapy and probably a break. I get to go away for a weekend every

year as well as conferences I choose to attend. Hubby takes care of Bridget

including dealing with her period. Maybe she has no famliy around. Maybe

her family does not accept the child.

It can get very lonely and tiring being your childs sdvocate, mother and

playmate just to name a few. I sure hope she gets the help and support she

needs.

mom to Bridget 12

wife to

in upstate SC

[Guest guest]

Hypermobility Syndrome and it can be very painful and does result in a lot more

injuries to my joints.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~