Growing Up Special

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

Blessed July 1, 2011

A couple months ago, I posted this poem and mentioned that it was similar to one we had framed in our house and signed by Alyssa. Well, when I was home for Alyssa’s graduation, that poem held a place of honor among her awards and accomplishments. So here it is in the original. 🙂

Blessed are you who take the time to listen to difficult speech, for you help me to know that if I persevere, I can be understood.

Blessed are you who never bid me to “hurry up” or take my tasks from me and do them for me, for I often need time rather than help.

Blessed are you who stand beside me as I enter new and untried ventures, for my failures will be outweighed by the times I surprise myself and you.

Blessed are you who asked for my help, for my greatest need is to be needed.

Blessed are you who understand that it is difficult for me to put my thoughts into words.

Blessed are you who with a smile, encourage me to try once more.

Blessed are you who never remind me that today I asked the same question twice.

Blessed are you who respect me and love me just as I am.

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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.

 

Real Life May 11, 2011

A friend recently asked me to explain how Alyssa’s condition impacts her daily life. This guest blog post, written by my 11-year old sister Tiffany, does a much better job at explaining that than I could.  Her insights are a lot of fun, but also profound.  Her perspective is a result of growing up with Alyssa and is a reflection of her experience, not necessarily a generalization about all special needs individuals. I hope you enjoy reading and learning what Growing Up Special means for us.



Growing up with a special needs kid is like growing up with a two year old. Anybody that has little brothers and sisters probably knows what that is like. For those who are the youngest or are the only child, I can explain.



Growing up with a two year old would mean you have to play games and watch movies that are for two year olds, and pick out their outfits, and get them ready. You would have to keep a close eye on them to make sure they don’t wander off or play with matches and that kind of thing.


The only difference is a two year old will grow up in it’s
mind and in it’s body. A special needs kid will grow in the
body, but will stay the same in the mind.



There are good things and there are bad things about a special needs kid. A few of the good things are watching them laugh and laugh during movies, and play games, and just watch them be themselves. That’s when they’re happy. When they’re mad, it’s a completely different story. They will scream and kick and pull hair and all of that.



I have a special needs sister. She has seizures. That means that she will fall down steps and that her brain will function at a two year old level.



It’s fun and sometimes a challenge to live with her. For instances, she will sometimes sleep with me. So she takes all my covers. She doesn’t know when it’s too cold outside to wear skirts or when it’s too warm to wear sweats, so we have to help her with that. We have a dog, so she likes to feed him. But she always gives him way to much, so you have to help her with that too.



Some of the things to do with her is help her make salads (which are really good), playing cards, helping her make scrapbooks, draw, cut out things she drew, and things like that.



A few things I’ve learned from living with a special needs sister are: how to make amazing salads, to be patient, kind, and loving.

 

Saturday musings May 7, 2011

This morning, I spent some time researching and reading about different seizure types. I’ve grown up hearing about partial and generalized seizures, absence versus atypical absence, etc, and have a pretty good idea about what most of them mean. However, I find it interesting to make connections between what I know and begin to understand how it all ties together.


I’m pretty certain that researching seizure disorders is not the way most people spend their Saturday mornings. But when you ‘grow up special,’ I don’t think it’s entirely unexpected.  🙂

 

Potential May 5, 2011

Final words from Ellen Notbohm, author of “Ten Things Every Child With Autism Wishes You Knew.”


“It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus…

I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.



All that I might become won’t happen without you as my foundation. Think through some of those societal ‘rules’ and if they don’t make sense for me, let them go. Be my advocate, be my friend, and we’ll see just how far I can go.

 

Ten Things, Part 10 May 3, 2011

This series of posts on “Ten Things” is based on the article “Ten Things Every Child With Autism Wishes You Knew.”


Please love me unconditionally.


It’s really all any of us really want. Someone to accept us for who we are and love us no matter what. And you may have noticed that loving unconditionally (no matter what you do or say), is something special needs individuals do really, really well.


Let’s take a lesson from them.

 

Ten Things, Part 9 April 30, 2011

This series of posts on “Ten Things” is based on the article “Ten Things Every Child With Autism Wishes You Knew.”


Try to identify what triggers my meltdowns.


I mentioned in part 2 how a simple trip to the grocery store can turn into a nightmare experience. Understanding that Alyssa does not (usually!) have tantrums because she just decided she wanted to be difficult makes it easier to deal with the tantrums when they come.


It does not meant that there is a magic pill of wisdom or patience. But knowing that a tantrum is probably brought on by external circumstances helps me to try to work with Alyssa.


For example, when she freaks out because we’re not going to the library when we said we would, it helps to know that it is not just because she wants to get her way. Her mind processes things slowly and very deliberately. If she was told one thing would happen and it fails to materialize, her brain just doesn’t understand how to adjust to the new information. There are so many little things that we take for granted that simply don’t connect in her mind.


And even though those connections may be difficult to make… she’s still beautiful.