Thursday, April 11, 2013

National Siblings Day!

I learned from reading my friend Andi's blog that yesterday was National Siblings Day! And in honor of the siblings who are growing up with special needs siblings, some bloggers are calling this Special Needs Sibling Week! Well, that just so happens to go along with a topic I've been thinking about tackling during Autism Awareness Month, and since we're on spring break today (following a trip to Gatlinbug, Tennessee for the last few days) I actually have some time to blog! :)

Let me start with a picture from our trip that really sums up my children and their relationship quite well:

Riley and Reece being goofy while Austin looks on in horror! LOL

Just like with Andi, all of my children have a sibling with special needs. So that makes their lives unique right off the bat. A topic of conversation among lots of moms with have children with autism is who will take care of our children when we are gone. Most of the moms I know plan for one of their autistic child's adult siblings to take responsibility of their special needs sibling. I wasn't sure how I felt about this. I have no siblings, which makes it really hard to understand how it's supposed to work!

Recently, I've been thinking very, very seriously about this issue. Austin is almost 17 years old and, as I mentioned previously, we've been contemplating filing for guardianship. It may not be a permanent thing, as he may only need a few extra years to be able to take care of himself - it's fairly standard in the autism world to say that high-functioning kids usually function about 75% of their chronological age. But if we do not have this in place when he turns 18, we automatically lose the ability to make some decisions for him - and that could be a problem. 

So I've been thinking about the future a lot. And while I am still trusting in God for His plans for Austin's future, I also have to be practical about looking out for Austin. There is a new commercial on TV for retirement planning and it features a couple with an adult special needs child - they talk about "Retirement planning for 3!" The first time my husband and I saw it, he said, "Or for 4?" And we got a big chuckle out of it. But it's not out of the realm of reality for us.
 
And that naturally leads me to think about WAY in the future - to when we're gone. Who will take care of Austin (and Reece - she's only 11 years old so it's impossible to know to what extent she will be able to be independent as an adult)?

The other day at lunch, I jokingly said, "When your dad and I are gone, you three have to take care of each other!" They all kind of looked at each other like I was crazy. 
 
Riley said, "Reece can't live with me!" 
Austin replied, "She can live with me.... she'll just have to pay rent." 
Then Riley, not to be outdone, said, "Well, she can live with me - but she has to pay for her own food!"
Reece just sat by quietly eating her lunch - her future being decided by the highest bidder! :D

Then I said, a little more quietly to Riley, "You need to look after Austin."
She looked at me with a somewhat puzzled look on her face. Then I saw the realization creep into her eyes. Her older brother, who tries so hard to be just like everyone else, and who wants nothing more than to be independent, may not be able to be. He missed this interaction, which is good. We are only just beginning this dialogue with him. 

And that's the whole point - my kids are old enough now to begin this dialogue, but in a way we have been forming the foundation their whole lives. We are a family - we look out for each other. Special needs or not. If someone needs help or assistance then we give it. Because we're a family! As a special needs family, the implications are a little more intense for sure. 

Tomorrow, and continuing all weekend, I will feature each of my children and talk more about how their lives are affected by being a special needs sibling! :)








3 comments:

Anonymous said...

well said Rhonda

Lisa said...

This made me misty-eyed. I will pray for Riley as she contemplates this part of her future and how that will play out.

walking said...

Not an easy topic for any of us!