Utter Autism

August 25, 2010

Emerging from the Pit of Despair

Anyone who regularly reads the blog of a parent of a child with a disability will sooner or later come across a post of despair.  Sure, you’ll sometimes see them from parents of typical kids too.  Goodness knows this parent job isn’t easy in what ever form it comes.  But parenting a kid with a disability just throws that extra twist of challenge in and I’ve met very few parents who meet it without periods of utter frustration and despair.

The past 8 months have been extraordinary for us, for me.  The bone infection, the hospital stays, the long term IV and antibiotics, the cast, the support boot, the visits with doctors and nurses, ….   Coupled with and followed by an especially trying period with Adrian’s behavior. 

We have holes in the walls all over the house.  He’s hurt his siblings, his grandmother and me numerous times.  Fits of rage with no apparent cause have left us feeling frustrated, helpless and even a little scared.  At 5’9″ and 200 lbs. it’s no joke when he comes at you full force.  I’ve been at home alone with the kids a few times and thought to myself that he could easily knock me out…. and then what?!

I know he doesn’t mean to cause harm or trouble.  I think he’s just as frustrated with what his hormones and OCD are doing to him as we are.  So many times in the past few months I’ve found myself in that place of despair.  I want help for him and for us.  I want things to be safe and less crazy for his siblings.  I want to ease his suffering and make things better.  But there are no easy answers.

We’ve increased the meds and made some changes in how we handle his behavior.  It’s making a difference, things are better.  But his OCD behaviors are still off the charts and we’re still dealing with periods of aggression and new holes in the walls. 

I wouldn’t classify it as despair any longer.  We can live with this if we have to.  It’s eased enough I can put aside my fear that putting him in some type of institution might be the only way to keep everyone safe… for now.

April 10, 2010

Facing the Reality of the Future

Last year I went to a workshop on guardianship given by my son’s school.  A lawyer and disability advocate came to talk with parents of children with disabilities about the need for and process of obtaining legal guardianship. 

Once he’d finished his presentation there was time for questions and, as so often happens when you gather parents of kids with disabilities, some emotional venting as well.  The lawyer had touched on the need for specifying alternate guardians who could step in and take over should anything happen to the parents.  This started a conversation about the ethics of putting that burden on the disabled child’s siblings. 

I completely understand how they all felt.  How could it be fair to expect this person to care for that person simply on the basis that they had the misfortune of being born into the same family?  It just doesn’t seem right.  Shouldn’t they have an option? 

Some parents even told stories of how they’re typical children were already ‘caring for’ their disabled siblings in some ways and how these siblings talked about a future of caring for their siblings as if it were just normal or expected.  And these parents clearly felt very badly about this. 

I hesitated to tell them all my secret.  I AM a sibling to someone with a developmental disability too.  So I have a rather unique perspective on all of this.

I explained that while it may not seem ‘fair’ or ideal, that one of the siblings would eventually need to become the guardian and/or advocate for the disabled child was simply the reality.   And facing that reality as a family sooner, rather than later, was one of the best things they could do for themselves and their children.

I understand as a parent how tempting it is to imagine that you’ll always be there to care for your disabled child.  But the facts are that they will very likely out live you.  We can either spend our time and efforts preparing for this reality or else pretend it doesn’t exist till we die… leaving our children to have to try to muddle on from there. 

We can do the hard work of setting our disabled children up with care – residential services, daily programming, employment, social services, Social Security, guardianship, etc.   But that’s not the end.

This group of parents were obviously on top of things.  They were, after all, there to face the reality and learn what they needed to learn to get the job done.  I commended them on that but warned them that the job of advocating for an adult with disabilities wasn’t something that was done once and forever.  It’s an ongoing task. They could never ‘finish’ the job so that sibling advocates would not be needed. 

It’s interesting to note that all the parents in the room were able to identify a sibling who either had a special bond with the disabled child or else had the personality traits of a good advocate.  I encouraged those parents that when their children spoke about taking care of their siblings in the future, that they should embrace that reality with their kids – to give them strength, encouragement and faith to be that advocate.

I’m acutely aware that one day Adrian’s siblings will someday have to take over my job as advocate.  It will mostly likely be Gee who takes over the bulk of this task but I don’t feel badly about this.  She’s smart, she’s strong and she’s got a special bond with Adrian. 

I’m going to do everything I can to make that job as easy for her as possible. I’ll set up what I can for Adrian, I’ll teach her what I know about advocating and I’ll do what I can to support and prepare her for the task.

I know she’ll be an awesome advocate.  I know it and I’ve already told her so.  And Bee and Zee will be there to sustain and support her the same way my sisters support me in advocating for my sister. 

The future really isn’t so scary.  The reality is Adrian is a very lucky guy.  He’s going to have an awesome advocacy team on his side 🙂

February 13, 2010

The New Normal

Slowly but surely we’re getting back to a new normal around here. 

Adrian is doing awesome with the PIC line in his arm.  It doesn’t seem to bother him a bit.  He doesn’t even look up from what he’s doing when I hook him up for the meds anymore.  I’ve gotten quite good at going through the procedure quickly and efficiently and I’m shifting the schedule for the meds to be a little less obtrusive in our day.

He is bothered by the cast but we’re getting around it.  I’m more comfortable leaving him alone for short bits of time having watched how cautious he is even when he does try to put pressure on the foot.  Ideally he wouldn’t do that at all, but all we can do is the best we can around here. 

Last night I actually left him alone upstairs in the bed asleep and got my first chance to relax at my desk in a week.  He’s still sleeping in our room for now but I can see that possibly changing if get his med schedule off nights and we can find ways to block him in his own bed.

He’s gotten quite good at zooming around the first floor in his wheelchair, even moving himself on and off the couch and going to the bathroom independently.   We set up a computer for him where he can just roll up to use it and with his chair moved out of the kitchen, eating is also a drive thru experience.

I’m still rather amazed things have gone as well as they have under the circumstances.  I’m still a bit tired and occasionally I think I may go out of my mind being attached to him 24/7 but then my wonderful husband steps in or the other kids offer to help.   Stealing a few hours to myself at night while he sleeps will go a long way towards making me feel like I have some freedom from being a mom and nurse too.

Yeah, the new normal isn’t so bad.  Only 5 weeks more of antibiotics to go 🙂

June 9, 2008

From Being Weary to Seeing Clearly

Adrian’s been out of control for about 3 weeks now.  It’s been a rough. We think hormones are partly to blame. It’s been severe enough that we made the appointment to speak with the doctor about options.  He’s very unhappy and his compulsive behaviors are preventing him from enjoying the things he usually finds calming and relaxing. 

I was feeling awful weary from it all this afternoon when I picked Adrian up from school.  Then, through the mirror, I watched as Zee and Adrian played.  They shared a few cookies, they laughed and giggled.  They played games where only the two of them understood the rules.  Adrian’s communication device lay lifeless on the seat next to me, defeated by the blow Adrian gave it when he threw it through the air earlier today. Just another in the long line of things he’s broken in the past few weeks.

But these two brothers didn’t need words.  They played and laughed and understood one another perfectly.  They put their foreheads together and giggled at one another. It was a sight to behold and brought tears to my eyes. 

See, despite the shattered window, broken baskets, cracked cabinets, the destroyed faucet and the constant slamming of doors and drawers… despite all the difficulties of the past few weeks, I was reminded that it’s really not all bad.  Adrian is part of our family and we love him.  The essence of Adrian is still in there, even when it’s hidden by a storm of rage and sadness.

Hopefully we can find a way to help him through this rough spot.  But regardless what lies ahead, I won’t soon forget the image of brotherly love or the reminder about how lucky we are to have him.

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