Growing Up Special

Thoughts, ramblings, and encouragement from a special need sibling to the world

Relating May 30, 2011

Please note I do not recommend the TV show I mention below. This post is merely an observation about what I have seen, not an endorsement.

So… I kind of want to cry right now. I’ve been watching episodes of a TV show recently and among the many families is one with a child with Asberger’s Syndrome.

Max has tantrums. He has trouble adapting socially. He doesn’t understand the things a ‘normal’ child his age would. It’s really interesting to see something so close my own life played out on television. But I think it’s a good thing. It’s good for others to start to understand what life is like with a special needs child. It’s a good thing for those of us who already know to see some of our struggles looking back at us through the TV.

Anyway. I don’t know why I feel like crying when I watch those scenes with Max, except that I relate. I relate to his parents and sister. I relate to the pain, the frustration, the hurt. But as I watched the final scene of one episode, in between the tears, I had to laugh. Max and his parents sat around the table playing Go Fish. And it is just so like our family. We all play our games and have fun, but we always take time to play Go Fish with Alyssa.

Isn’t it crazy how many similarities there are between special needs kids? And how, even if “special needs” is just an actor playing out the script on-screen, we still recognize what is true of every special needs child and family. We relate… because we know what it’s like.

So let’s relate. In doing so, we’ll probably cry and laugh and it may be for no good reason. But I think it’s good for us to realize the similarities and to know that we’re not in this alone.

 

Privileged May 27, 2011

In case you ever doubted, wondered, or just never thought of it…

Here is a reminder that YOU, a sibling of a special needs child or adult, are privileged in ways that no one else ever can be. Don’t ever forget it.


You, in all your suffering and sorrow, are the most privileged of all beings, for you are to be perfected through suffering… if only you realized your destiny, how you would rejoice at every experience of trial and tribulation, and even in the persecution which comes your way… ‘for when you are weak,’ then you learn how to be made strong.”


~Mountain of Spices, Hannah Hurnard

 

Graduation!!! May 25, 2011

Filed under: Life,Stories — brittanyk1 @ 6:30 am
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I cannot believe Alyssa is graduating in just over a week!  I am so incredibly proud of my special sister. Isn’t she amazing and gorgeous and awesome? 🙂

 

Love is forever May 23, 2011

The first time I talked to a friend about how I would probably someday be Alyssa’s guardian, I was relieved to find someone who understood! In fact, my friend’s parents had gone a step farther than mine and put it in their will. It’s something that I think a lot of special need siblings experience, but perhaps we don’t realize how it impacts us.

It’s hard for a teenager to be asked “When you’re both adults, will you care for your special needs sibling?” It’s hard for an 18-year old to be named a legal guardian to special needs individuals barely younger—or perhaps even older—than themselves. But for most of us, it’s a no-brainer. We love our special siblings. They’re (often) incapable of living on their own or caring for themselves long-term. So of course we’ll care for them.

Then one day it hit me what exactly that means. It will be different for each of us. For me, it means becoming responsible for a special needs adult who needs constant care and supervision. It means dealing with tantrums from a very strong, very strong-willed adult. It means assuming the financial responsibility, not only for the day-to-day living expenses, but possible medical expenses. It means the possibility of getting married and raising my children with my special sibling present. (Not a completely bad thing, but the thought of adult tantrums plus young children is not pleasant). It could mean finding an alternative living situation for my special sibling. It may mean finishing raising my children and continuing to care for my special sibling.

Because special needs is forever. And ever. And ever.

Good thing love is forever too.

 

Trial… or blessing? May 20, 2011

“There is absolutely no experience, however terrible, or heartbreaking, or unjust, or cruel, or evil, which you can meet in the course of your earthly life, that can harm you if you will but let me teach you how to accept it with joy and react to it triumphantly as I did Myself, with love and forgiveness and with willingness to bear the results of wrong done by others. Every trial, every test, every difficulty and seemingly wrong experience through which you may have to pass, is only another opportunity granted to you of conquering an evil thing and bringing out of it something to the lasting praise and glory of God.”

~Mountains of Spices, Hannah Hurnard

Sometimes, life is hard. It is good to remember that every trial ultimately brings blessing; ‘something to the lasting praise and glory of God.’  Do you doubt it?

Just think… can you imagine this world without the

beauty of special needs people?


Neither can I.

So glory in the hard times you may have with your special needs sibling.  Something great and good would be missing from your life without them.

 

Interviewed… May 18, 2011

I recently participated in an interview with a gal who is writing her thesis on sisters of young adult women with intellectual disabilities. It’s always interesting (and slightly weird) to talk about myself and my experiences in growing up special, but this was a really good experience. Kate was very down-to-earth and real and didn’t have any reactions of horror to my stories. (Which is good, because I’m very honest about life with Alyssa)!

Anyway, it just made me think more about how important it is to find and keep those people in our lives that we can be honest with. Sometimes special is hard. Sometimes it’s awesome. Sometimes it’s just plain different.

But if we can find those around us who understand where we’re coming from, encourage each other through the hard times, laugh during the good, and just be there no matter what, I think we’ll all come away as better, stronger people.

 

Alyssa-ism’s May 16, 2011

I love talking to Alyssa. She always says the most awesome/amusing/downright hilarious things.

For example, the other night she was showing me (over Skype) how awesome her sunglasses were. I asked to see them closer, but she informed me:

“I have to keep them on my head!!!”
(Of course, I asked why?)
“Because I WOSE (lose) dem.”

That makes sense to me!

And this one was just too sweet.

“You just made my day for the rest of my life.”