So Where is the Support for the Spouses?

I applaud this blogger for posting various support resources for siblings of someone with a disability.  They need all the support they can get.

Just one little issue I have with this list.

Where is the support for the spouses/significant others of siblings?

I am reluctant to join any kind of support group for sibs.  Their struggle is not my struggle.  Their experience is not my experience.  I don't want to intrude in their support of each other.  I'm not even sure I would be welcome.

Am I selfish in wondering where my support is?  There is some general support out there "for families".  But, we are lumped in with "parents, spouses...."

Parents get their own support groups.

Sibs get their own support groups.

We spouses or significant others "signed up" voluntarily, knowing the people we loved enough to live with or marry had these special individuals in our lives.  We help caregive.  We help research their future.  We spend time with the disabled member.  We do so many things, yet there is no safe place for us to discuss our particular needs.  Where is the support group where I can feel safe to vent?

Am I the only person who feels the way I do?

Does anyone care?

Sometimes I feel that, as the spouse of a sibling, I exist in some kind of support limbo. 

Goodbye For Now

So much has happened in the last nine months, since I last posted on this blog.  We have been through a major illness, and an attempt to gain guardianship of Bil.  Things have been moving quickly.

You'd think I'd be busy updating this blog and you are wrong. 

For now, in another couple of days, I may take this blog private, at least temporarily.

I am going to attempt to blog in a different place for now, with the possibility of returning to this blog at a later date.    I am not sure that a blog where I vent sometimes is the best venue for something like that, and for those posts, I do want to have a much bigger audience.  This blog has been flying under the radar, and I don't have a problem with that.

I may return, and I may re purpose this blog, and make it public again.  But, no promises!

To paraphrase The Terminator:  I may be back!

A Fellow Sib Speaks Out

It can be very hard to be the sibling of someone with a disability.  Many times, the parent must spend a lot of time with the "special needs" child, and the sibling(s) without disability can be neglected emotionally or even physically.

This doesn't get blogged about often but I was struck by a recent blog post.  What happens when one sibling has a disability, one doesn't, and the sibs are twins?

This isn't the case with Bil and his sibs.  They are either a few years older or a few years younger.

But, I loved that post, and I highly recommend the blog the blogger of that post writes about Down Syndrome issues.

The Prodigal Blogger

Well, I returned.  Like the Prodigal Blogger I've shown up, three months after my last post.

You can't say I didn't warn you.  I did tell you I might never blog again.  And I almost never did.  But today, something hit me.

I decided, I really do want to make something of this blog.  I had even thought of using this blog to blog a book about my circumstances, but I've changed my mind about that.

Too much whining in some past posts, for one thing.  I did some venting in the past, which is OK if you are just writing for your own benefit, but not OK if you want other people to take you seriously.

People have blogged books, yes indeed, and some have become best sellers or even movies. (Rember Jul.  But books as vehicles of change, which is something I would like to address with my situation?  No.

For example, this blog post tells us that a lot of books don't even sell 300 copies a year.

Not much chance of change with a big 300 readers.

But, if you are dedicated, it is not much effort to reach 300 readers of a blog by following the advice of serious bloggers/authors such as Nina Amir. I'm not sure how long it would take for me to study her advice and put it into action. I would certainly have to give people the content they deserve, for the precious time out of their lives they would give my blog.

So, right now, I am in the thinking stage, even as we are trying to accomplish some exciting things in Bil's life. I'd love to vent and complain about the "latest and greatest" in Bil's life but I am not going to do it. Here, anyway.

Not any more.


So, what I have written here is a bunch of brave words. 

Now, to see if I can back them up.  I could try to blog a book in 30 days. 

Because of other things in my life that demand commitments, I won't be commitment free until December.  So maybe - let's say two months, or three?

Shall we see?

May Be a While

It's been three months since my last post, and a lot has happened.

So much that I haven't had time to blog about it.

In a way, we have gotten nowhere.  But in another way, we are progressing.  I guess that's how life always is.

I honestly don't know when I will be posting again.   I really don't know where I want to go with this blog.  So, if I don't post again- goodbye and thank you for your interest.

And if I do - you will certainly be the first to know.

Call Back Roulette

The wonderful world of advocacy and customer service!  Don't you love it!

My husband and I both, and a third party helping us, been having a frustrating week with customer service.  The latest is my mother in law's alarm system.  Before that, an online purchase.  Before that.....

Sigh.

Alarm system, bounced back and forth, voicemail menu doesn't give me the option I need, I finally reach what I think is the correct extension, am put on hold for over 5 minutes and then told to leave a message.  No option to continue to hold.  I would have; I'm doing plenty of other items anyway but now I have to hang around for a call back. If there is an emergency at my mother in law's house, will they give the same customer service????

I'm also waiting on something that Bil's medicaid service coordinator is supposed to be sending, and I haven't received yet.  Maybe it's just late in the mail.

Calls to my mother in law's lawyer re a paper he drew up for her.  No call backs. Guess who is not going to get our business in the future.  A lawyer who can't return a phone call is scary, because legal work is full of deadlines.  Will he meet any deadlines needed?  My mother in law is of the age where she can't make call after call after call. At least if his office can't speak to us, could they tell us what we need to do so they can?

Frustration.

When No is Not No

We are having some success, thanks to help we have gotten from an unexpected source, in perhaps getting some movement from the agency that handles Bil's Medicaid Service Coordination.

What I was unable to do, this person (who has cost us money, but has been worth it) has been able to - well, at least get their attention.

We are waiting to hear back.

The aim is to get Bil training to increase his independence, and, indirectly, allow him to be of more assistance to his Mom.  His Mom needs a lot of help around the house now, and Bil is definitely in the role of caregiver to his elderly Mom.

You would think this would help the taxpayer.  But until now, I've just received excuses.  What they will do is ask Bil, 'do you want to...." and of course he says no. He, after all, has autism.  He is anxious about any change in his routine.  He needs to be coaxed, and then he is OK.

But, so much easier to take his automatic no as a "no", because then they don't have to bother, don't have to give the service.

Well, this paid person has probably done about all she can do.  Isn't it sad that we had to spend money to get what Bil is entitled to?  Yes, entitled to!  He is a taxpayer.  He works for a living.  It doesn't matter that it is at a sheltered workshop.

He should be a valued member of our community, but that isn't the fate of most people with disabilities.

So much easier to take their "no" as a no, and not give them the opportunity to be more independent.

So much progress still needed - but it's a start.