Re: I'm new! Need encouragement

[Guest guest]

Kateri,

I'm so sorry. It sounds like you have so much on your plate right now. You have come to the right place. This is a very supportive and understanding group. I can so relate to how you are feeling. The only thing I can say is it does get better over time. The ebb and flow of emotion,grief there will be many ups and downs but you can do this. Please try and find some help and support in your family,church or community. You can do it but you do not need to do it alone. There are many wonderful people out there and God will send you the help you need. Try and take care of yourself. You need to take breaks, you cannot give and give until you are empty. This is not a race but a walk. Try and take sometime to just be. To be a Mom a wife a friend, to be by yourself, not always a warrior. Read what you can and follow your instincts on what to try and what

would be to much or not work for your family. For sleeping we use the time release form of melatonin. I don't know if you use that kind but it works much better. We buy it at Walgreens but I'm sure most pharmacies carry it. used to wake up early on the regular melatonin but this helped a lot. It also helps for to take a long warm bath with Epsom salts in it. I usually dissolve 1 1/2 cups of Epsom salts in hot water then add it to the bath water, this helps it dissolve and it isn't gritty. You would also have to watch an make sure he doesn't drink much of the water, it is a laxative so if he is a little constipated and he likes to drink bath water (really gross but used to drink it) a little will work like a stool softener. is 8 so I would start with maybe 1/2 cup and add more over time if needed. Sleep is so important for your son and you. I know I get

overwhelmed so easily when I haven't been getting enough for awhile and acts up so much more when he hasn't gotten enough so it is a double whammy. I will pray for you and your family, Kellie

To: AutismBehaviorProblems Sent: Monday, January 12, 2009 12:38:09 PMSubject: I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him

healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin

[Guest guest]

Is he in intervention preschool? I have to say that this saved me. I know this sounds bad but I loved it when he is in school. It was a time that I could just focus on my other kids, or put in a movie for them and recharge. is now in Kindergarten all day and things have gotten a lot better because the other children do not feel left out and I can regain some sanity to face the rest of the day when he comes home. We now have 4 total all younger then my autistic son.

My sons autism got better over time. We learned to deal with it and behavior and speech got so much better. I promise it does get better.

It took me several months for the autism diagnoses to finally sink it. It took my husband and I about 6 months and then it just hit full force one week. When we first got the diagnosis we already knew he had autism so we were actually pleased to finally have the diagnosis and then it sunk in a lot later and was difficult to deal with. I found my self crying at night over what life was going to be like or the difficulties he was going to have.

to us it was almost like you are grieving over a child that has died. You think that all your hopes and dreams for that child have died. It reality they really have not they just have to be tweeked. I think it is really difficult for husbands they feel like they are the protectors and fixers of the family. When something is wrong and they do not have the capacity to fix it they fill like they have failed. We as women are often left alone to raise that child because the spouses don't know how to deal with their failure. I had to find an activity that my husband and my autistic son liked to do together. In our house it is the Wii. They play together almost everyday : )

Subject: Re: I'm new! Need encouragementTo: AutismBehaviorProblems Date: Monday, January 12, 2009, 2:10 PM

Kateri,

I'm so sorry. It sounds like you have so much on your plate right now. You have come to the right place. This is a very supportive and understanding group. I can so relate to how you are feeling. The only thing I can say is it does get better over time. The ebb and flow of emotion,grief there will be many ups and downs but you can do this. Please try and find some help and support in your family,church or community. You can do it but you do not need to do it alone. There are many wonderful people out there and God will send you the help you need. Try and take care of yourself. You need to take breaks, you cannot give and give until you are empty. This is not a race but a walk. Try and take sometime to just be. To be a Mom a wife a friend, to be by yourself, not always a warrior. Read what you can and follow your instincts on what to try and what

would be to much or not work for your family. For sleeping we use the time release form of melatonin. I don't know if you use that kind but it works much better. We buy it at Walgreens but I'm sure most pharmacies carry it. used to wake up early on the regular melatonin but this helped a lot. It also helps for to take a long warm bath with Epsom salts in it. I usually dissolve 1 1/2 cups of Epsom salts in hot water then add it to the bath water, this helps it dissolve and it isn't gritty. You would also have to watch an make sure he doesn't drink much of the water, it is a laxative so if he is a little constipated and he likes to drink bath water (really gross but used to drink it) a little will work like a stool softener. is 8 so I would start with maybe 1/2 cup and add more over time if needed. Sleep is so important for your son and you. I know I get

overwhelmed so easily when I haven't been getting enough for awhile and acts up so much more when he hasn't gotten enough so it is a double whammy. I will pray for you and your family, Kellie

From: kateri222 <kateri222yahoo (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Monday, January 12, 2009 12:38:09 PMSubject: I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him

healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin

[Guest guest]

Kateri...May I give you a hug??? I need to (((((((Kateri))))))))

God love you...Autism does affect so many parts of our lives --- and depending on what part of the spectrum they fall, often times dictates the amount of stress is involved. I only know what it has done for us, and to us. is 2.2 yrs old...it is sooooooooo expensive, the care and therapy it takes to help him is very expensive--as most know, it is all out of pocket, as ABA works for and our insurance does not cover it. I know it is stressful on a marriage as well...not just the finance part, but the constant "high alert" part...I am exhausted by the end of the day, and often times have very little left. Daddy's have a hard time sometimes because they are not only grieving the "loss" of a child, and or what they thought that child would be, but also the "loss" of his wife for a time. I will not say I relate completely as that would be an insult to you, as is higher functioning....as well as in good

physical health...that in itself adds a tremendous stress on you.

I will say that I get it to the extent I can.......we are all in this together, and my hope is that you will post often...let us comfort you --- all of us mom's come here with a different story, and or different needs, as different way to treating Autism...but the one link is just that Autism...we get it. I know you will find mom's who share your concerns, and your stress!

I do not know if you are a woman of faith, so I don't mean to offend, but my MD told me something early on, he said, "God knew that needed you, and that for whatever reason you needed ...you may not understand it all on this side of heaven, but you will someday"

Some things that may empower you!

Use your voice---fight for him

Use your voice---help others who are in your same situation --- you have soooooooo much to offer this community

Use your voice -- start a special needs sports group, and or Sunday School class...

Use your voice, and help others understand this...

Get him lots of therapy-- do what you can afford...Reading Stanley Greenspan's book is a great place to start

Get into a local Autism support group.

Get some respite...some churches have special needs "nights out" --

Have Grandma or someone you know take him, even if it's just for a day --- be with your husband

If you need help to help you cope, please get it...it does not make you weak or a bad mom...it makes you strong and courageous.

He is yours, and although you do not feel it now, you are equipped...It's so OK to feel like you are drowning in sorrow...you have been through a lot in a short time. Post, post often.

Love to you and that precious child of yours.

e

To: AutismBehaviorProblems Sent: Monday, January 12, 2009 12:38:09 PMSubject: I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him

healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin

[Guest guest]

If we give our son his melatonin about midnight he sleeps longer - we use a syringe into his mouth in his sleep, but we are lucky as he takes meds in his sleep.

I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement... maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin

[Guest guest]

Wow, what good advice. And Kellie, I was reading what you wrote about this too and you are both so supportive and just great. I wanted to let you know that. both of you. And you are so right about the grief and it is like someone died. but, in reality the child did not die, but the life has been tweeked. good way of putting it.

Stacie

Is he in intervention preschool? I have to say that this saved me. I know this sounds bad but I loved it when he is in school. It was a time that I could just focus on my other kids, or put in a movie for them and recharge. is now in Kindergarten all day and things have gotten a lot better because the other children do not feel left out and I can regain some sanity to face the rest of the day when he comes home. We now have 4 total all younger then my autistic son.

My sons autism got better over time. We learned to deal with it and behavior and speech got so much better. I promise it does get better.

It took me several months for the autism diagnoses to finally sink it. It took my husband and I about 6 months and then it just hit full force one week. When we first got the diagnosis we already knew he had autism so we were actually pleased to finally have the diagnosis and then it sunk in a lot later and was difficult to deal with. I found my self crying at night over what life was going to be like or the difficulties he was going to have.

to us it was almost like you are grieving over a child that has died. You think that all your hopes and dreams for that child have died. It reality they really have not they just have to be tweeked. I think it is really difficult for husbands they feel like they are the protectors and fixers of the family. When something is wrong and they do not have the capacity to fix it they fill like they have failed. We as women are often left alone to raise that child because the spouses don't know how to deal with their failure. I had to find an activity that my husband and my autistic son liked to do together. In our house it is the Wii. They play together almost everyday : )

From: Kellie Folkerts <folkangelymail>Subject: Re: I'm new! Need encouragementTo: AutismBehaviorProblems Date: Monday, January 12, 2009, 2:10 PM

Kateri,

I'm so sorry. It sounds like you have so much on your plate right now. You have come to the right place. This is a very supportive and understanding group. I can so relate to how you are feeling. The only thing I can say is it does get better over time. The ebb and flow of emotion,grief there will be many ups and downs but you can do this. Please try and find some help and support in your family,church or community. You can do it but you do not need to do it alone. There are many wonderful people out there and God will send you the help you need. Try and take care of yourself. You need to take breaks, you cannot give and give until you are empty. This is not a race but a walk. Try and take sometime to just be. To be a Mom a wife a friend, to be by yourself, not always a warrior. Read what you can and follow your instincts on what to try and what would be to much or not work for your family. For sleeping we use the time release form of melatonin. I don't know if you use that kind but it works much better. We buy it at Walgreens but I'm sure most pharmacies carry it. used to wake up early on the regular melatonin but this helped a lot. It also helps for to take a long warm bath with Epsom salts in it. I usually dissolve 1 1/2 cups of Epsom salts in hot water then add it to the bath water, this helps it dissolve and it isn't gritty. You would also have to watch an make sure he doesn't drink much of the water, it is a laxative so if he is a little constipated and he likes to drink bath water (really gross but used to drink it) a little will work like a stool softener. is 8 so I would start with maybe 1/2 cup and add more over time if needed. Sleep is so important for your son and you. I know I get overwhelmed so easily when I haven't been getting enough for awhile and acts up so much more when he hasn't gotten enough so it is a double whammy. I will pray for you and your family, Kellie

From: kateri222 <kateri222yahoo (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Monday, January 12, 2009 12:38:09 PMSubject: I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin New year...new news. Be the first to know what is making headlines.

[Guest guest]

Hi Kateri,

You're going to fit in here really well and we can give you encouragement.

What is Collin's diet like? His tummy is what is probably affecting his sleep, is he allergic to any foods, gluten, casein, soy, etc?

Subject: I'm new! Need encouragementTo: AutismBehaviorProblems Date: Monday, January 12, 2009, 1:38 PMI'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.

I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that

can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).

Long story short, Collin needs a kidney transplant to make him healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...

Anyway, I'm just hoping for a little encouragement... maybe if I can hear some stories of hope, that'd help...

(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)

Kateri- mom to 3.5yr Collin

------------------------------------

[Guest guest]

e,

you are so right too and very supportive as well. You all are. WE all want to help in any way we can. Gosh I wish we all lived closer. Wouldnt that be so nice? I think so.

Stacie

Kateri...May I give you a hug??? I need to (((((((Kateri))))))))

God love you...Autism does affect so many parts of our lives --- and depending on what part of the spectrum they fall, often times dictates the amount of stress is involved. I only know what it has done for us, and to us. is 2.2 yrs old...it is sooooooooo expensive, the care and therapy it takes to help him is very expensive--as most know, it is all out of pocket, as ABA works for and our insurance does not cover it. I know it is stressful on a marriage as well...not just the finance part, but the constant "high alert" part...I am exhausted by the end of the day, and often times have very little left. Daddy's have a hard time sometimes because they are not only grieving the "loss" of a child, and or what they thought that child would be, but also the "loss" of his wife for a time. I will not say I relate completely as that would be an insult to you, as is higher functioning....as well as in good physical health...that in itself adds a tremendous stress on you.

I will say that I get it to the extent I can.......we are all in this together, and my hope is that you will post often...let us comfort you --- all of us mom's come here with a different story, and or different needs, as different way to treating Autism...but the one link is just that Autism...we get it. I know you will find mom's who share your concerns, and your stress!

I do not know if you are a woman of faith, so I don't mean to offend, but my MD told me something early on, he said, "God knew that needed you, and that for whatever reason you needed ...you may not understand it all on this side of heaven, but you will someday"

Some things that may empower you!

Use your voice---fight for him

Use your voice---help others who are in your same situation --- you have soooooooo much to offer this community

Use your voice -- start a special needs sports group, and or Sunday School class...

Use your voice, and help others understand this...

Get him lots of therapy-- do what you can afford...Reading Stanley Greenspan's book is a great place to start

Get into a local Autism support group.

Get some respite...some churches have special needs "nights out" --

Have Grandma or someone you know take him, even if it's just for a day --- be with your husband

If you need help to help you cope, please get it...it does not make you weak or a bad mom...it makes you strong and courageous.

He is yours, and although you do not feel it now, you are equipped...It's so OK to feel like you are drowning in sorrow...you have been through a lot in a short time. Post, post often.

Love to you and that precious child of yours.

e

From: kateri222 <kateri222>To: AutismBehaviorProblems Sent: Monday, January 12, 2009 12:38:09 PMSubject: I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin

New year...new news. Be the first to know what is making headlines.

[Guest guest]

I am so glad I found this group. I searched through all the groups and was very careful about who I came to... I have another network on yahoo groups for his kidney issues, and they too are very helpful...

I still believe he will get better post transplant- be it denial, hope, blind faith- I hope it is faith.... As a mom I've learned that even if I'm made a fool it's my job to hope for my son... when all is said and done I won't be sorry...

I do get out a lot, fortunately... got the best in-laws I could have, and my hubby is great with Collin too, but it's just all high-maintenance, and NOTHING is ever good enough it seems... because he is still sick.

What is the general aura of this group as far as belief systems go re: religion, autism source, etc? I'm sure it's varied... I'm certainly a woman of faith... I am a Born again Christian and God is who I draw the majority of strength, however, I'm human... and waiting for sanctification ( haha)... it'll be awhile. My church is "supportive" as much as they seem to know how to be... which is pray and check in on me... I have great friends who have done sOOO much for me... after C was diagnosed, they brought me meals for two weeks, took me out for coffee, called and checked on me, they love him too.

I'm very fortunate with all this... we have an incredible doc from pitts, pa... (anyone else have Faber?), but it all seems not enough. My God is big though, and I'm waiting for our miracle... Collin has come through MANY MANY of them... so, there's got to be more...

anyway, Thanks gals!Many smiles

-Kateri M Murray

Subject: Re: I'm new! Need encouragementTo: AutismBehaviorProblems Date: Monday, January 12, 2009, 11:14 PM

e,

you are so right too and very supportive as well. You all are. WE all want to help in any way we can. Gosh I wish we all lived closer. Wouldnt that be so nice? I think so.

Stacie

In a message dated 1/12/2009 2:18:01 P.M. Pacific Standard Time, ljdjd1234yahoo (DOT) com writes:

Kateri...May I give you a hug??? I need to (((((((Kateri) )))))))

God love you...Autism does affect so many parts of our lives --- and depending on what part of the spectrum they fall, often times dictates the amount of stress is involved. I only know what it has done for us, and to us. is 2.2 yrs old...it is sooooooooo expensive, the care and therapy it takes to help him is very expensive--as most know, it is all out of pocket, as ABA works for and our insurance does not cover it. I know it is stressful on a marriage as well...not just the finance part, but the constant "high alert" part...I am exhausted by the end of the day, and often times have very little left. Daddy's have a hard time sometimes because they are not only grieving the "loss" of a child, and or what they thought that child would be, but also the "loss" of his wife for a time. I will not say I relate completely as that would be an insult to you, as is higher functioning. ...as well as in good

physical health...that in itself adds a tremendous stress on you.

I will say that I get it to the extent I can.......we are all in this together, and my hope is that you will post often...let us comfort you --- all of us mom's come here with a different story, and or different needs, as different way to treating Autism...but the one link is just that Autism...we get it. I know you will find mom's who share your concerns, and your stress!

I do not know if you are a woman of faith, so I don't mean to offend, but my MD told me something early on, he said, "God knew that needed you, and that for whatever reason you needed ...you may not understand it all on this side of heaven, but you will someday"

Some things that may empower you!

Use your voice---fight for him

Use your voice---help others who are in your same situation --- you have soooooooo much to offer this community

Use your voice -- start a special needs sports group, and or Sunday School class...

Use your voice, and help others understand this...

Get him lots of therapy-- do what you can afford...Reading Stanley Greenspan's book is a great place to start

Get into a local Autism support group.

Get some respite...some churches have special needs "nights out" --

Have Grandma or someone you know take him, even if it's just for a day --- be with your husband

If you need help to help you cope, please get it...it does not make you weak or a bad mom...it makes you strong and courageous.

He is yours, and although you do not feel it now, you are equipped...It' s so OK to feel like you are drowning in sorrow...you have been through a lot in a short time. Post, post often.

Love to you and that precious child of yours.

e

From: kateri222 <kateri222yahoo (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Monday, January 12, 2009 12:38:09 PMSubject: I'm new! Need encouragement

I'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).Long story short, Collin needs a kidney transplant to make him

healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)Kateri- mom to 3.5yr Collin

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Hi ,

After 7 months on breastmilk, 3 years on milk formula, we FINALLY convinced the kidney docs that his poo was excreting too much protein (i.e.not absorbing milk... leading to the 29# to 24# drop in weight) We put him on amino acid formula (no solids per his feeding disorder... yeay) but his BUN shot up to toxic levels (120), and creatinine too (kidney toxin numbers)... we are starting a feeding disorders behavior therapy with his SCHOOL (yes he is in school since last summer I nearly lost my head when he digressed a year's worth of therapy in 8 weeks). We then balanced his neocate formula with mct oil and polycose to balance the bun a bit. adjusted a couple more times b/c too much polycose (which still may be the source of the sleeplessness) and we are still wrestling with it.

Tonight we tried the epsom salt, I put him down, rocked him for 45 minutes at 8:30, and it's 11;29 AND HE'S STILL AWAKE, so I'm wondering if epsom salt might have had an opposite effect- what with magnesium, and kidney disease not mixing well... well can 't say I didn't try it! The lavender lotion seems to work sometimes, but never know if that is mixed with some other variable... anyway, long night girls!

-Kateri M Murray

From: kateri222 <kateri222yahoo (DOT) com>Subject: I'm new! Need encouragementTo: AutismBehaviorProbl emsyahoogroups (DOT) comDate: Monday, January 12, 2009, 1:38 PMI'm new! Need help because my son Collin has a million health issues. Kidney disease, oral defenses, developmental delays, (just some of them) and of course he was diagnosed with autism this summer, so I have been on this road for a little while.

I was reading how some of your other kids have HAD it with your autistic child... I think I'm at the point where it's ME that

can't take it. I feel that autism has stolen my life from me: my son, my sanity, Sleep, quiet, patience, my marriage, self-control. I have had really bad thoughts over the last week... not uncontrollably, but on a semi-regular basis... I'm usually able to shut it out as a woman of faith, but lately I'm just trying so hard to find solutions and coming up empty handed- doctors, husband, no one seems to agree with the necessity of proactivity, (I know you can relate).

Long story short, Collin needs a kidney transplant to make him healthier (how can his brain work properly without a healthy organ) but the doctors see his autism and basically just saying work on that instead of kidney...

Anyway, I'm just hoping for a little encouragement. .. maybe if I can hear some stories of hope, that'd help...

(Collin is on melatonin recently to help with sleep... it helps him get to sleep by 10:30, but he's still up every morning at 4:30-5- any other suggestions? I have to be careful what I put in tho b/c of autism)

Kateri- mom to 3.5yr Collin

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