Aloneness

July 20, 2007

That feeling of being alone against or without the world is so moving. And

it made me MOVE!!! I hated our little PA town because there was no room for

acceptance of our family as we constitutied it. No school community - Elie

was sent away to day school- so no other parents. No neighbors who cared to

understand. And a police force who wanted me to tatoo my kid for ID. But

they thought microchipping was inhumane.

Now we live in an even smaller community. We chose to move into a new

subdivision rather than buy land and build a house or buy and exissting

stand alone proerty. I want community. Well, we have been here a year. I

won;t say the neighbors flock to see us, but we visit out on the street or

in the neighbohood. We are starting a community emergency response team and

neighborhood association. And people who learn about Elie are interested

(from a little distance) but at leasst not afraid or wary. Slowly we will

build a circle of friends who understand and care. I have not met a family

(while learning about emergency response) who doesn't have SOME issue.

Elderly sick parents, rebellious teens, drugs, drinking, unemployed spouses

or worse, children coming home without jobs! Not my issues, but issues. We

can bond over the fact that life AIN " T a bowl of cherries, but vertical is

better than horizontal.

We are welcomed at all town and county activities. We have visted with the

sheriff aand the deputies - who asked if Elie might learn to carry a whistle

so he can call for help! No talk of branding him.

I would love some respite to travel, but I can at least see that coming.

>

> (and all the others who wrote about this),

>

> I was really touched by your description of the loneliness of the

> situation you found yourself in- and one that is just too familiar to

> many here. My DH and I have never done many " couples " type things to

> begin with, but even when it comes to extended family gatherings,

> it's very hard for all those reasons you listed.

>

> I'd like to put out a little hopefulness that things will get better

> better, though. I think that over time you learn to re-adjust your

> expectations, your friends, your list of zingy one-liners when you

> need 'em, and hopefully have someone else that you can have be with

> your daughter so that you can do some of the adults things.

>

> We have begun to bring a caregiver with us to keep Pete occupied,

> safe, and as happy as possible when we know we want to have some

> adult conversations. We often bring along CD's that we know will

> make him happy, keep fidget items close at hand, and like a few

> others talked about, have a plan for eating that keeps him occupied

> and content. I know that something that drives us up the wall is

> when the food at an event is served more than an hour later than our

> regular family routine. I know that if I give Pete something to

> snack on, he won't be hungry for the main course or he will just eat

> way too much.

>

> But that whole issue of " what on earth do people talk about? " is also

> tough. I usually try to concentrate on ONE person that I enjoy

> visiting with, or can find some common ground.

>

> Strange as it sounds, even my DH's professional colleagues- in

> SPECIAL ED- (he's in deaf ed) find it difficult to connect with us!

> I simply think it brings it all too close to home for them. We have

> happily found a few people here and there that find Pete more

> fascinating to be with than scary. Those folks get invited back!

>

> I have been working on using a new line when people ask how we are

> doing and Pete has had given us some new behavior challenge to chew

> on: I describe the event in detail, and tell them, " I am not telling

> you this because I am complaining about it. I'm just relating how

> our life IS. " Then I try and find some common thread about the

> rotten stages that ALL teens go through and my kid's is just a

> different version of that. (Sometimes I can make myself believe

> that, sometimes not, LOL!)

>

> I also try and find some friend who just makes me feel good to be

> around them- someone who lifts me up and won't drag me down. I have

> found over the years that when most of my friends are also parents or

> folks in the disability arena, it can get a little disheartening if

> you can NEVER get away from the topic! So it takes some doing to

> cultivate something that can take us outside of our kids. I know

> that there are stages our kids go through that seems like that will

> never happen, but being aware of it can help steer you towards

> something fresh.

>

> You know, Joan's blog on forgiveness was one of the most powerful

> things that I have read relating to this topic.

> http://www.disabilitysolutions.org/blog/2005/oct12.htm I found out

> only after a lot of work this past year that I have been angry at too

> many things for too long- raging against things over which I just

> don't have a lot of control, such as people doing jerky things

> against our kids in the media, (or in person!) or another new spec.

> ed label change, or a really good teacher or therapist going on

> maternity leave or just moving away, or seeing other kids with 'just'

> DS doing things that I suspect I will never see my son do....

>

> But it sure helps when you have someone else out there who can help

> you laugh over something, who wants to just meet for a drink, who is

> willing and able to just let you talk if you need to.

>

> Hee hee. If you really want to mix it up with folks who are only

> talking about their latest toy or trip, you can always start talking

> about a political or religious hot topic! That might move a boring

> cocktail chatter into some much more interesting topics, LOL!

>

> The main thing is that everyone on this list feels safe enough here

> to talk about such painful situations and find out immediately that

> no one walks this path alone.

>

> Love you all,

>

> Beth Mum to Pete, age 17, central Ohio

>

July 20, 2007

Hello Sara and others who have commented on aloneness and ununderstanding

friends. We have 9 children,most are adults now. We have adopted 5 hildren with

Down syndrome and 4 of them are at home with us. Our oldest,Andy is just 26 and

very affected by autism. He is a wonderful, happy fellow who HATES to do

anything different. We are always doing something..a very active family and were

worried about how Andy would do when were no longer able to care for him. So we

asked a local agency that had a home 3 blocks from our home if he could go on a

waiting list for that home. In the meantime Andy visited there many times.

Finally an opening came and Andy moved in. Now he comes home weekends and other

special days and it seems to be " working " for l of us....On to the friends

situation. All of or friends are people we have know for 8-25 years. They either

have children with differing abilities or are " in the field " . We are great pals

with our CSE chair..she is a very good " out of the box " thinker...for my

children..and all of the children going though our cse. I only know one family

who is very unhappy with her. My husband is a social worker and most of the

people he works with " get it " and are supportive.

I had cancer 3 years ago and when I went to the hosp for surgery the whole

special ed dept in my school provided meals for 2 weeks to our family. Drinks,

dessert, main course everything...and each person brought sooo much food that it

actually lasted a month...1/2 went to the freezer. Once when a mistake was made

and there was noone here after school to greet the kids(5 of them at that time)

3 6th graders saw that there wasn't an adult here at the house when the kids got

off the school bus(someone ALWAYS went out to greet the bus)They brought the

kids inside and called the school secretary(it was one of the boys mother)and

said " Thre is noone here with the sullivan kids,what should we do? " The secretary

said, " Stay right there...I'll be right down " . I arrived about 10 minutes later

to find everyone having a snack and happy as pie.(I did NOT know the secretary

at that time..except to say " hello " to) We are now friends and that boy who was a

6th graded and his siter now work for us as respite providers! It truely takes

a village and we have it here. When one of our son's first started going to the

store in our town(pop.540 approx) people would stop at he house and say< " Did you

know that is down at Quickway? " " Yes, thanks for telling us " ...they didn't

know if it was " all right " and we also thanked them for their concern..but it

was a good concernWe feel very fortunate to live here where we do..it's not

perfect of course...but we have a lot of support ..that we are very gratefull

for.

I must say that I have been to holiday parties etc and had that " outsider "

feeling too .especially when the other parent's were talking about college, and

scholarships etc...it is just hard sometime..that's why we fall back on our

" circle of friends " \

Brigid