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.

Bil at the Gym

Bil went to a health club last week!

Well, he didn't do much of anything there.  But the fact that he was there was encouraging because of the reason he was there.

His mother took an exercise class - water walking.  She finally (a great victory) allowed herself to be talked into going to a health club. She has a one month trial membership. She had resisted this for years, as her physical condition deteriorated.

Bil's mother is at the point now where she doesn't want to drive by herself.  So, Bil came in the car with her.  I'm not sure what he did for the time she was there but they do have a little cafe there.

I wish so much we could get Bil into that pool, but I somehow don't think that is ever going to happen - unless his mother talks him into going with her.  And I am not sure the club will allow that unless he buys a membership.

The memberships aren't cheap either, sadly.

Right now, our focus is on Bil's Mom.  If she doesn't want to fall again, she must work on her balance. She must use a walker too, but that's another story.

Right now, every time we see Bil, he seems to have gained more weight.  I think he would at least walk in the mall if accompanied by someone.  But his Mom can no longer mall walk and we live hours away.

Right now, we'll just have to put these concerns aside and see what happens with his Mom.  There's only so much we can do at one time.

Bil Speaks for Himself

It was something to see.

I would almost call it a miracle.

Bil knew that someone was coming to my mother in law's house to access her physical condition.  Normally, if a stranger had come to the house, he would have hid in his room.

Not this time.

Bill sat on a chair, near the recliner my mother in law uses, as the person interviewed my mother in law.

At one point she denied having fallen for almost a year, and Bil immediately corrected her, listing times she had fallen, and one time she had tripped.  He named dates and places.

He left at one point, but came back a few minutes later.

He stayed there for almost the entire time.

My theory is, he is deeply concerned for his mother in law, and sensed this person was there to help.  He still wasn't able to articulate his thoughts, but the fact that he stayed, and the fact that he wouldn't let his mother lie, I think spoke for herself.

Good for him.

If only we could wave a magic wand and give him typical abilities to interact with people.  What might we see?

But last week, Bil spoke for himself.  And I was so proud.