Re:O.T. - my world seems to shrink smaller and smaller

May 12, 2009

Kristi, you are not alone in being alone. Autism has consumed our lives as

well, and our circle of friends is so small it is more like a line. There are

myriad reasons for this, but the biggest are that my boy makes many people

uncomfortable with his weirdness and since we do not have buckets of money to

throw around we have to do almost all our own respite (she breaks me so I can

work and I break her so she can work; yes, we live our lives in shifts).

It is precisely this reason that respite supports from Medicaid are absolutely

vital is people are going to keep their families intact and their overall

personna stable. Of course, this is one of the first things to go anytime

budgets get tight.

May 12, 2009

>

> Kristi, you are not alone in being alone. Autism has consumed our lives as

well, and our circle of friends is so small it is more like a line.

This is true. Although I know literally tens of thousands of people in the

autism community (or rather mostly they know me), only a tiny few do I consider

friends. And even among these the stresses of autism sometimes causes

distortions of misdirected personal abuse with painful results. To this day, I

cannot easily discern who is or isn't a walking pile of emotional dynamite

waiting for an autism-world spark. It's hard to recover from friendly fire.

Ironically, I have come to really appreciate a few old time-tested friends from

my non-autism days. Thank god the internet made it easy to reconnect.

Lenny

May 12, 2009

Shafer and list friends,

I am appreciative of your knowledge, guidance and support in my quest for remediation for my child. I am thankful that you all know how I and we feel, in having a vaccine injured child. Thanks so much for getting me through the day to day challenges. Collectively, we may save the world..I applaud you as parents, for actively participating in this world we are in..

Candyce

Re:O.T. - my world seems to shrink smaller and smaller

>> > Kristi, you are not alone in being alone. Autism has consumed our lives as well, and our circle of friends is so small it is more like a line. This is true. Although I know literally tens of thousands of people in the autism community (or rather mostly they know me), only a tiny few do I consider friends. And even among these the stresses of autism sometimes causes distortions of misdirected personal abuse with painful results. To this day, I cannot easily discern who is or isn't a walking pile of emotional dynamite waiting for an autism-world spark. It's hard to recover from friendly fire. Ironically, I have come to really appreciate a few old time-tested friends from my non-autism days. Thank god the internet made it easy to reconnect.Lenny

May 12, 2009

For us this has been kind of an evolving thing. Initially after our son's dx we

became consumed with it. Our other son was only fifteen months older, so we did

have to maintain some " normalcy " however we soon knew within our circles of both

friends and family who we could count on.

We were lucky too to have my in-laws living right around the block and their

unconditional love of our son was one thing that we will always be eternally

grateful for. Additionally is was rough, seeing family and friends kind of

falling by the wayside. But we then gravitated toward other families who had

children with ASD to provide support.

Over the years though we realized we needed to break out of that pattern when it

was apparent that we were kind of all " aquiring autism " . Now I say that tongue

in cheek so I hope folks won't be offended, but I know some of you have been

there....done that.

So we put forth to change that for our entire family, no longer were the only

social events we attended autism fundraisers. Though we always attended family

gatherings, and our children soon became the most behaved because we had thumbs

on them constantly, we started hosting events...very brave indeed.

We also started RDI with our son that that process allowed us to really look at

how our own relationships with others had subsided. Though we had some good

friends, I still have two good friends from high school, we also realized that

we as a family needed to be just that..a family that did not revolve around our

son with ASD as the center.

It was almost like a rebirth and it's been nice really. Funny thing was though

that I had my 30th HS reunion year before last. I saw people we had not seen in

years, three of which also had kids with ASD. Weird because though I took those

names and we kept in contact a little while, it's not been something we've

harvested.

I also think that for each family this dynamic is different depending on your

natural circle of support. But I would urge you all to think about a couple of

things because this has happened to friends from the ASD community that I loved.

We really need to think about our kids futures in that what would happen if you

were not there tomorrow. Really not ten years from now, but tomorrow. I would

urge folks to branch out, settle in a place where folks are that will love your

child for who they are and most importantly.....don't use computer friendships

to gauge an involvement level. Use real people because those are the people

that will be there for your family.

Sorry so long, but having been disappointed big time, I've realized the

investment in our children's future starts with us spending time with them and

expanding their natural circle of support.

Carolyn

>

> Kristi, you are not alone in being alone. Autism has consumed our lives as

well, and our circle of friends is so small it is more like a line. There are

myriad reasons for this, but the biggest are that my boy makes many people

uncomfortable with his weirdness and since we do not have buckets of money to

throw around we have to do almost all our own respite (she breaks me so I can

work and I break her so she can work; yes, we live our lives in shifts).

>

> It is precisely this reason that respite supports from Medicaid are absolutely

vital is people are going to keep their families intact and their overall

personna stable. Of course, this is one of the first things to go anytime

budgets get tight.

>

May 13, 2009

Realizing this is not for everyone, I identified with the writer very much;

I am disabled and have a child on the spectrum. It is rough at times.

I have found spiritual support within the Unity church I attend, which would be in the "liberal" and "peace" movement sorts of categories founded by a husband and wife in this country in the 1800s. Some Unity churches are more than ecumenical; they are interfaith, though Christian. In any case, as a practical matter, the treatment of children is gentle, kind, and respectful despite any differences.

Children feel and learn peaceful living, the practical ways to live a calm life. These are special lessons for everyone, but are so wonderful. I would recommend "Unity" lessons for children, beginning with the "Chicken Soup for the PreTeen Soul", a prerequisite to all other curriculum. I think our kids need faith to make it through and learn joy. Whether becoming members as a family, or just ordering curriculum for your special kids, the middle school level stuff is just great, very practical and helpful stuff for in home learning for ASD kids, I have found, whether you home educate or not. Some posters are very helpful.

I also found true community, with only true support expected, but not any kind of hypocrisy. Like Bhutan, and its "gross national happiness" secretary said recently, "Happiness is more important than productivity; helping others is our happiness". Seek Spiritual Results, Lis A. Pineau"Seek peace and pursue it" ~Psalm 34:14http://bp0.blogger.com/_ci83y06mpmA/RmOGujyNp9I/AAAAAAAAAAM/jOMJq7YwuFA/s1600-h/Y+Best+Canoe+shot.JPG

To: EOHarm Sent: Tuesday, May 12, 2009 12:45:34 PMSubject: Re:O.T. - my world seems to shrink smaller and smaller

>> > Kristi, you are not alone in being alone. Autism has consumed our lives as well, and our circle of friends is so small it is more like a line. This is true. Although I know literally tens of thousands of people in the autism community (or rather mostly they know me), only a tiny few do I consider friends. And even among these the stresses of autism sometimes causes distortions of misdirected personal abuse with painful results. To this day, I cannot easily discern who is or isn't a walking pile of emotional dynamite waiting for an autism-world spark. It's hard to recover from friendly fire. Ironically, I have come to really appreciate a few old time-tested friends from my non-autism days. Thank god the internet made it easy to

reconnect.Lenny

May 13, 2009

Our lives are like this, too. I'm home during the day - therapists at the house,

driving to various therapies, pracitioners, etc. and I'm always cooking so the

kid has something he can eat that suits his diet (and we can afford).

2 evenings per week/Saturdays - I'm off to work to make much needed $$ and keep

my business afloat (and have SOME remnant of my life), and DH takes over. I

think we have 3 couples we consider 'friends'. We see them once every 2-3 months

at best, usually more like 4 times per year. I keep in touch with e-mails, and

see one of the 3 wives at least once a month (I take a Mom's night out for

dinner with a friend once a month - NO MATTER WHAT. It makes me pay attention to

politics, world news, pop culture, etc. so I can converse with people on the

" outside " ). DH prefers for me to take our son to the park or something for his

sanity time -to nap in front of the TV, putz around the house in peace.

We have a dinner " date " planned for the first time in....2 years (!?) this

month. We got a gift card and our mom's helper volunteered to sit an evening as

a Xmas gift.

Respite means - I have a mother's helper at the house, while I'm here (or only

as far away as the supermarket) for all of 2 hours on Fridays. We even go to

weddings alone - one of us has to stay with our son. Same with funerals. Not

sure what will happen when someone close passes on and we BOTH need to be there.

Life changes in ways you couldn't have imagined, and those who don't live it

will never understand. I tip my hat to all of us doing it -it takes fortitude,

grit, and commitment.

>

> Kristi, you are not alone in being alone. Autism has consumed our lives as

well, and our circle of friends is so small it is more like a line. There are

myriad reasons for this, but the biggest are that my boy makes many people

uncomfortable with his weirdness and since we do not have buckets of money to

throw around we have to do almost all our own respite (she breaks me so I can

work and I break her so she can work; yes, we live our lives in shifts).

>

> It is precisely this reason that respite supports from Medicaid are absolutely

vital is people are going to keep their families intact and their overall

personna stable. Of course, this is one of the first things to go anytime

budgets get tight.

>

May 13, 2009

We have no one that is willing to take care of our son should something happen

to us. Our parents are not well enough with their own health (and I have parent

care on my plate, as well). Our siblings either flat out said they refused (and

would quickly institutionalize him) and one is an alcoholic who can't keep a

job/home. Friends have just said flat out they don't think they could do it and

don't want to do it.

I even explained and asked his favorite therapist, who is never married, in her

30's and longing for kids, to be his guardian, and she said she 'can't' due to

" professional boundaries " .

We have no clue what to DO.

> >

> > Kristi, you are not alone in being alone. Autism has consumed our lives as

well, and our circle of friends is so small it is more like a line. There are

myriad reasons for this, but the biggest are that my boy makes many people

uncomfortable with his weirdness and since we do not have buckets of money to

throw around we have to do almost all our own respite (she breaks me so I can

work and I break her so she can work; yes, we live our lives in shifts).

> >

> > It is precisely this reason that respite supports from Medicaid are

absolutely vital is people are going to keep their families intact and their

overall personna stable. Of course, this is one of the first things to go

anytime budgets get tight.

> >

>

May 13, 2009

One suggestion is to talk to a good probate attorney about your will and a

special needs trust for your child(ren). You need to ask around your area for a

referral. One option, and it is expensive, is to hire a professional guardian to

pick up after you leave off. There are people, businesses who do this. They

will not love your child like you do, but it is better than leaving it to chance

by some state appointed overworked caseworker. You can pick them out while

you're still alive.

You can try to join with other parents to put together some kind of cooperative

community venture with the goal of combining resources to take care of one

another's children or adult children. These have their risks because you really

have to know well the people you are throwing in with. What if one or two

members in your kibbutz turns out to be flaky? How can you " divorce " out of it,

if necessary, if your assets are co-mingled? What to do then? Finding, and

divorcing one mate is hard enough. Many parents of autistic children are a bit

themselves on the spectrum and may have a disadvantage at sizing up compatible

group living partners. I am not on the spectrum at all, yet I am terrible at

judging suitable partners - for marriage, business or groups. I do have family

members who are willing to step in for my son if I turn out to be mortal after

all. But if they changed their minds, and people do, I would in trouble.

Lenny

> > >

> > > Kristi, you are not alone in being alone. Autism has consumed our lives

as well, and our circle of friends is so small it is more like a line. There

are myriad reasons for this, but the biggest are that my boy makes many people

uncomfortable with his weirdness and since we do not have buckets of money to

throw around we have to do almost all our own respite (she breaks me so I can

work and I break her so she can work; yes, we live our lives in shifts).

> > >

> > > It is precisely this reason that respite supports from Medicaid are

absolutely vital is people are going to keep their families intact and their

overall personna stable. Of course, this is one of the first things to go

anytime budgets get tight.

> > >

> >

>

May 13, 2009

,

Try not to worry yourself too much about that aspect right now. Over the years, your son's prognosis will likely get better. I cannot promise you that, but will say that is what I have seen from my own experience. If you and your husband decide to have more children, they will also likely help your current son in ways that you may not even have imagined. A psychiatrist who evaluated 2 of my sons, told me that the best thing we did was having more children. The presence of more children in the house (whether they were neurotypical or not, did not matter much) helped the initial few overcome some of their awkward habits, and helped get them more used to other children being around. The more the merrier?

Aasa

Subject: Re:O.T. - my world seems to shrink smaller and smallerTo: EOHarm Received: Wednesday, May 13, 2009, 4:14 AM

We have no one that is willing to take care of our son should something happen to us. Our parents are not well enough with their own health (and I have parent care on my plate, as well). Our siblings either flat out said they refused (and would quickly institutionalize him) and one is an alcoholic who can't keep a job/home. Friends have just said flat out they don't think they could do it and don't want to do it. I even explained and asked his favorite therapist, who is never married, in her 30's and longing for kids, to be his guardian, and she said she 'can't' due to "professional boundaries". We have no clue what to DO. > >> > > > Kristi, you are not alone in being alone. Autism has consumed our lives as well, and our circle of friends is so small it is more like a line. There are myriad reasons for this, but the biggest are that my boy makes many people uncomfortable with his weirdness and since we do not have buckets of money to throw around we have to do almost all our own respite (she breaks me so I can work and I break her so she can work; yes, we live our lives in shifts). > > > > It is precisely this reason that respite supports from Medicaid are absolutely vital is people are going to keep their families intact and their overall personna stable. Of course, this is one of the first things to go anytime budgets get tight.> >>

May 13, 2009

You just described my situation to a tee, with the exception that my wonderful

parents are already dead, and I'm single. This is my single biggest worry.

Hopefully someone here will have some advice for us.

Chrissy

> >

> > For us this has been kind of an evolving thing. Initially after our son's

dx we became consumed with it. Our other son was only fifteen months older, so

we did have to maintain some " normalcy " however we soon knew within our circles

of both friends and family who we could count on.

>

May 13, 2009

Thanks for the support, I appreciate the confidence that my son will improve. If

he improves as much in the next year or two as he has in the past year he may

well be 'recovered', although I think we've done the " easy " stuff and now we're

getting into the nitty gritty tough things. The benefit of having just him is

that all resources can go to his recovery.

I am physically incapable of having more children and after the hell I went

through with pregnancy and almost dying during/after my son's birth (after 45

hours of labor) I'm quite fine with never going through that again! I thought we

could adopt one day, if we felt we ever wanted to add to the family, but we are

both in our 40's our house is only a 2 bedroom, and all our money is tied up for

our son's therapies. No more kids in this picture!

You are blessed with your children, and so are they to have YOU!

> > >

> > > Kristi, you are not alone in being alone. Autism has consumed our lives as

well, and our circle of friends is so small it is more like a line. There are

myriad reasons for this, but the biggest are that my boy makes many people

uncomfortable with his weirdness and since we do not have buckets of money to

throw around we have to do almost all our own respite (she breaks me so I can

work and I break her so she can work; yes, we live our lives in shifts).

> > >

> > > It is precisely this reason that respite supports from Medicaid are

absolutely vital is people are going to keep their families intact and their

overall personna stable. Of course, this is one of the first things to go

anytime budgets get tight.

> > >

> >

>

May 15, 2009

Lenny, take care, keep attempting to find f2f support. It is there...meantime

without internet support I don't know where most asdParents would be. TG4 small

favors, not so small actually..blessings. L

--- Original Message ---

Sent:Tue 5/12/09 12:47 pm

To:EOHarm

Subj: Re:O.T. - my world seems to shrink smaller and smaller