Re: Re: Suggestions for parents?

[Guest guest]

Mel. I love you. said it before and well im saying it again....

To: mb12valtrex Sent: Friday, August 10, 2012 12:06 PMSubject: Re: Suggestions for parents?

Your post could have been written by me. "Roller coaster?" Check. "Used to be fun?" Check. "Obsessed with recovering?" Check. "They don't help as they could?" Check.I must admit I take Citalopram, which is a generic version of some antidepressant that is free through my employer. I started taking it during the first devastation of the diagnosis and then just kept taking it after that. It stops the crying. This is what makes me so upset that I still take the medication. I feel like the main character in "The Help" who said after her son died, she had swallowed a bitter pill. I know my kid didn't die or anything, and I am not anybody's servant, but I have become a bitter person. Nobody at my "family-friendly" workplace cared/cares about what I went through/am going through. They were and they continue to be extremely insensitive. My supervisor who was the most insensitive, and continued to yell at me like I have never been yelled at in

my life during my darkest days, is going through chemotherapy for breast cancer now and crying in my office every day. I am dying to say so much back to her, but of course I don't. I want to tell her, "Your kid is grown. As long as our kids are healthy, who the hell cares if we ourselves die? With your falling hair, you get a million more times empathy than I ever got. You're able to get a good night's sleep, which I never do. You can go out to eat, which I never do. You can take a shower every day. I take one once a week…."Don't get me started on the coworker who complains about having to give one single dose of thyroid medication to her toddler every day. I don't even tell her how many & *%$ supplements, how many times a day my beautiful daughter has had to take for so long. This bitterness carries into everything else, but I keep quiet. Even looking at a Harry and catalogue, I say, "Yes, pears are so damn important." Parents

magazine? "Yes, we really need to know about * & %$# back-to-school fashions." It's very hard for others to understand our worries for our children's future. And it's very hard for me to understand their "stupid" worries. Maybe due to the medication, I hide my snarkiness well. At least while I am with other people, I genuinely feel for them while they complain. But afterwards, I know inside that I don't give a rat's behind about anything, anything at all, except for recovering my daughter. It is kind of freeing, actually. This is what I find myself doing, probably to make myself realize how good I have it; We had had one whole year of testing, worrying, and crying about a couple genetic mutations that my daughter had. It turned out we were extremely lucky; my daughter will not develop either of the two horrible diseases that she had mutations for. I continue to read the blogs of parents whose kids have those full-blown diseases and I see

how they are coping and I realize how horrible things could have been and how infinitely lucky we ended up. Those parents are my inspiration to keep on trucking. Mel

[Guest guest]

Very well said. I can relate to every word ;-)

Sent from my Cricket smartphone

" schnuppit@... " wrote:

>Love this post.....'if your children are healthy you have it all', I told a

friend who was complaining endlessly about 'having it all' working and raising a

family at the same time..

>

>

>

>

>>

>> Your post could have been written by me. " Roller coaster? " Check. " Used to be

fun? " Check. " Obsessed with recovering? " Check. " They don't help as they could? "

Check.

>> I must admit I take Citalopram, which is a generic version of some

antidepressant that is free through my employer. I started taking it during the

first devastation of the diagnosis and then just kept taking it after that. It

stops the crying.

>> This is what makes me so upset that I still take the medication. I feel like

the main character in " The Help " who said after her son died, she had swallowed

a bitter pill. I know my kid didn't die or anything, and I am not anybody's

servant, but I have become a bitter person.

>> Nobody at my " family-friendly " workplace cared/cares about what I went

through/am going through. They were and they continue to be extremely

insensitive.

>> My supervisor who was the most insensitive, and continued to yell at me like

I have never been yelled at in my life during my darkest days, is going through

chemotherapy for breast cancer now and crying in my office every day. I am dying

to say so much back to her, but of course I don't. I want to tell her, " Your kid

is grown. As long as our kids are healthy, who the hell cares if we ourselves

die? With your falling hair, you get a million more times empathy than I ever

got. You're able to get a good night's sleep, which I never do. You can go out

to eat, which I never do. You can take a shower every day. I take one once a

weekÂ…>. "

>> Don't get me started on the coworker who complains about having to give one

single dose of thyroid medication to her toddler every day. I don't even tell

her how many & *%$ supplements, how many times a day my beautiful daughter has

had to take for so long.

>> This bitterness carries into everything else, but I keep quiet. Even looking

at a Harry and catalogue, I say, " Yes, pears are so damn important. "

Parents magazine? " Yes, we really need to know about * & %$# back-to-school

fashions. "

>> It's very hard for others to understand our worries for our children's

future. And it's very hard for me to understand their " stupid " worries.

>> Maybe due to the medication, I hide my snarkiness well. At least while I am

with other people, I genuinely feel for them while they complain. But

afterwards, I know inside that I don't give a rat's behind about anything,

anything at all, except for recovering my daughter. It is kind of freeing,

actually.

>> This is what I find myself doing, probably to make myself realize how good I

have it; We had had one whole year of testing, worrying, and crying about a

couple genetic mutations that my daughter had. It turned out we were extremely

lucky; my daughter will not develop either of the two horrible diseases that she

had mutations for. I continue to read the blogs of parents whose kids have those

full-blown diseases and I see how they are coping and I realize how horrible

things could have been and how infinitely lucky we ended up. Those parents are

my inspiration to keep on trucking.

>> Mel

>>

>

>

[Guest guest]

My son is 15yrs old & live in NY.. we applied for medicaid disability for him..thru NY a few yrs ago when we lived upstate NY.. Many parents could not believe i had no help since they were getting help thru the state since 5yrs old... & my son had so many issues w aggression/ wandering/ needs 24/7 supervison for safety/meds/ It took alot of papers , tears etc to get thru but now have a Medicaid Disability w no bearing on parents income. There are service coordinators that help implement all the papers & should help u fight for your childs / your rights. It is harder now w cut backs but if you fight for it , find advoctaes to help thru local law school students ( we went thru a few different

interns) & disability advocates. we learned alot from them & what & how to get what these kids are entitled to.

We chose the option to hire own res-hab workers ( get paid thru the medicaid program) plus we get 6 respite hours a week to use. We rarely use them all as it is hard to get competent staff to help you. But we have kept on going & finally have some reliable people that come in & work w him thru a schedule i made up. It is a token economy system w breaks & down time/ ball try to get him on stationary bike etc..they have to know the behavior plan from school if there are issues w that.My husband gets upset w someone always coming over now but it is a needed break & helps everyone.We should not have to face this alone. It is not fair to our families that take such a beating .take care

karen

[Guest guest]

the not being believed was the hardest part for me in this journey. people would look at me with my dirty shirt that i would wear for a week in a row and my bags under my eyes and assumed I had either a drug problem or severe mental problems. they never ever considered that it was really that hard dealing with autism.

people just thought I was exxagerating when i talked about his food intolerances or how I never had time to even shit...or clean or the mental exhaustion of listening to the constant mental running of my son that could only be compared to my cousins girlfriends severe crack habit.

i recently became involved with someone who is like holy crap how have you survived this for five years by yourself?! (i didnt tell him that it helped I was a little crazy to begin with)...but it was sooooo nice to have someone finally see my life and acknowledge the hell for what it is. like wow....yes, he see,s how my son eats like a mad man all the time yet complains he is still hungry all the time....he see,s how the supplements he is on how time consuming it is yet how much they help with his digrstion mood ect.....after five years it is like I dont have to keep telling myself I am not delusional.after all the attacks by CPS trying to proove I was making up my sons illness...constantly havin to proove myself.someone believes me..that my son really does have these medical issues and I am not just playing biomed because I have some wierd hang up about pretending to

be a mad scientist..or doctor....I was forced/thrown into this role...

but before him there was you guys....my warrior buddies....thank God we all have each other we can reach and comfort thru the internet and these groups:)

channa

To: mb12valtrex Sent: Friday, August 10, 2012 9:47 PMSubject: Re: Suggestions for parents?

Wow, this is so me. All of it. Cynical, bitter and generally "not fun" anymore either... And yes, obsessed with trying to recover my son, not getting too many showers or hair cuts these days either, sometimes barely looking in the mirror as I throw on a big ugly tee shirt to start my day. Researching endlessly to see what we could be missing... Supplementing all day. I have put on 15 pounds and I am just generally bitter. I too was treated unbelievably crappy during my sons regression into autism... My own family tried to send me away, telling me I was crazy because they didn't believe it. My husbands family doesn't speak to us because they think biomed is bad and we are ruining our sons life. In a sad way, it is nice to read that I am not alone.Here's to all you ladies in the struggle! At least we have each other! Big hugs!>> Your post could have been written by me. "Roller coaster?" Check. "Used to be fun?" Check. "Obsessed with recovering?" Check. "They don't help as they could?" Check.> I must admit I take Citalopram, which is a generic version of some antidepressant that is free through my employer. I started taking it during the first devastation of the diagnosis and then just kept taking it after that. It stops the crying. > This is what makes me so upset that I still take the medication. I feel like the main character in "The Help" who said after her son died, she had swallowed a bitter pill. I know my kid didn't die or anything, and I am not anybody's servant, but I have become a bitter person. > Nobody at my "family-friendly" workplace cared/cares about what I went through/am going through. They were and

they continue to be extremely insensitive. > My supervisor who was the most insensitive, and continued to yell at me like I have never been yelled at in my life during my darkest days, is going through chemotherapy for breast cancer now and crying in my office every day. I am dying to say so much back to her, but of course I don't. I want to tell her, "Your kid is grown. As long as our kids are healthy, who the hell cares if we ourselves die? With your falling hair, you get a million more times empathy than I ever got. You're able to get a good night's sleep, which I never do. You can go out to eat, which I never do. You can take a shower every day. I take one once a week…."> Don't get me started on the coworker who complains about having to give one single dose of thyroid medication to her toddler every day. I don't even tell her how many & *%$ supplements, how many times a day my beautiful daughter has had to take for so long.

> This bitterness carries into everything else, but I keep quiet. Even looking at a Harry and catalogue, I say, "Yes, pears are so damn important." Parents magazine? "Yes, we really need to know about * & %$# back-to-school fashions." > It's very hard for others to understand our worries for our children's future. And it's very hard for me to understand their "stupid" worries. > Maybe due to the medication, I hide my snarkiness well. At least while I am with other people, I genuinely feel for them while they complain. But afterwards, I know inside that I don't give a rat's behind about anything, anything at all, except for recovering my daughter. It is kind of freeing, actually. > This is what I find myself doing, probably to make myself realize how good I have it; We had had one whole year of testing, worrying, and crying about a couple genetic mutations that my daughter had. It turned out we were extremely lucky; my

daughter will not develop either of the two horrible diseases that she had mutations for. I continue to read the blogs of parents whose kids have those full-blown diseases and I see how they are coping and I realize how horrible things could have been and how infinitely lucky we ended up. Those parents are my inspiration to keep on trucking. > Mel>

[Guest guest]

Wow so I am not alone!!hate the poople who talk about my son as if he is not in the room,F it he can and will get better,and all those silly so called experts maybe one day they will be working for him cos he is going to do great things!!!Let your email find you with BlackBerry® from VodafoneSender: mb12valtrex Date: Sun, 12 Aug 2012 18:03:25 -0700 (PDT)To: mb12valtrex <mb12valtrex >ReplyTo: mb12valtrex Subject: Re: Re: Suggestions for parents? the not being believed was the hardest part for me in this journey. people would look at me with my dirty shirt that i would wear for a week in a row and my bags under my eyes and assumed I had either a drug problem or severe mental problems. they never ever considered that it was really that hard dealing with autism. people just thought I was exxagerating when i talked about his food intolerances or how I never had time to even shit...or clean or the mental exhaustion of listening to the constant mental running of my son that could only be compared to my cousins girlfriends severe crack habit.i recently became involved with someone who is like holy crap how have you survived this for five years by yourself?! (i didnt tell him that it helped I was a little crazy to begin with)...but it was sooooo nice to have someone finally see my life and acknowledge the hell for what it is. like wow....yes, he see,s how my son eats like a mad man all the time yet complains he is still hungry all the time....he see,s how the supplements he is on how time consuming it is yet how much they help with his digrstion mood ect.....after five years it is like I dont have to keep telling myself I am not delusional.after all the attacks by CPS trying to proove I was making up my sons illness...constantly havin to proove myself.someone believes me..that my son really does have these medical issues and I am not just playing biomed because I have some wierd hang up about pretending tobe a mad scientist..or doctor....I was forced/thrown into this role...but before him there was you guys....my warrior buddies....thank God we all have each other we can reach and comfort thru the internet and these groups:)channaTo: mb12valtrex Sent: Friday, August 10, 2012 9:47 PMSubject: Re: Suggestions for parents? Wow, this is so me. All of it. Cynical, bitter and generally "not fun" anymore either... And yes, obsessed with trying to recover my son, not getting too many showers or hair cuts these days either, sometimes barely looking in the mirror as I throw on a big ugly tee shirt to start my day. Researching endlessly to see what we could be missing... Supplementing all day. I have put on 15 pounds and I am just generally bitter. I too was treated unbelievably crappy during my sons regression into autism... My own family tried to send me away, telling me I was crazy because they didn't believe it. My husbands family doesn't speak to us because they think biomed is bad and we are ruining our sons life. In a sad way, it is nice to read that I am not alone.Here's to all you ladies in the struggle! At least we have each other! Big hugs!>> Your post could have been written by me. "Roller coaster?" Check. "Used to be fun?" Check. "Obsessed with recovering?" Check. "They don't help as they could?" Check.> I must admit I take Citalopram, which is a generic version of some antidepressant that is free through my employer. I started taking it during the first devastation of the diagnosis and then just kept taking it after that. It stops the crying. > This is what makes me so upset that I still take the medication. I feel like the main character in "The Help" who said after her son died, she had swallowed a bitter pill. I know my kid didn't die or anything, and I am not anybody's servant, but I have become a bitter person. > Nobody at my "family-friendly" workplace cared/cares about what I went through/am going through. They were andthey continue to be extremely insensitive. > My supervisor who was the most insensitive, and continued to yell at me like I have never been yelled at in my life during my darkest days, is going through chemotherapy for breast cancer now and crying in my office every day. I am dying to say so much back to her, but of course I don't. I want to tell her, "Your kid is grown. As long as our kids are healthy, who the hell cares if we ourselves die? With your falling hair, you get a million more times empathy than I ever got. You're able to get a good night's sleep, which I never do. You can go out to eat, which I never do. You can take a shower every day. I take one once a week…."> Don't get me started on the coworker who complains about having to give one single dose of thyroid medication to her toddler every day. I don't even tell her how many & *%$ supplements, how many times a day my beautiful daughter has had to take for so long.> This bitterness carries into everything else, but I keep quiet. Even looking at a Harry and catalogue, I say, "Yes, pears are so damn important." Parents magazine? "Yes, we really need to know about * & %$# back-to-school fashions." > It's very hard for others to understand our worries for our children's future. And it's very hard for me to understand their "stupid" worries. > Maybe due to the medication, I hide my snarkiness well. At least while I am with other people, I genuinely feel for them while they complain. But afterwards, I know inside that I don't give a rat's behind about anything, anything at all, except for recovering my daughter. It is kind of freeing, actually. > This is what I find myself doing, probably to make myself realize how good I have it; We had had one whole year of testing, worrying, and crying about a couple genetic mutations that my daughter had. It turned out we were extremely lucky; mydaughter will not develop either of the two horrible diseases that she had mutations for. I continue to read the blogs of parents whose kids have those full-blown diseases and I see how they are coping and I realize how horrible things could have been and how infinitely lucky we ended up. Those parents are my inspiration to keep on trucking. > Mel>