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.


96 Cents June 17, 2011

Another Alyssa story… a follow-up from last Saturday’s post on the dark after morning.

We were at the grocery store one Friday and Alyssa honed in on the movies. If you know Alyssa, you know she LOVES movies. If you don’t know Alyssa… well, it’s time you learned that she LOVES movies. 🙂 She’s addicted. She will carry around old VHS tapes, even though we have no way to play them, just because she loves them so much.

Well, she found a Beethoven DVD on sale and she was DETERMINED that she was going to get that video. However, we had to tell her no.

Alyssa does not take well to the answer ‘no’ when it comes to movies. So we started talking. I talked to her, then Momma talked to her, then I talked to her some more. Nothing was going to convince her to leave that movie. She started getting grumpy. Then she started getting mad. Then she started pushing and pulling and pinching. All in all, it was very quickly deteriorating into a full-blown, all-out tantrum in the grocery store.

(Random sidenote: if this had been the ‘regular’ grocery store in Granby, I wouldn’t have worried so much. Most people know Alyssa and they are understanding and probably won’t call the police or security or think we’re horrible people. Isn’t it awesome to have a place like that? Anyway… this happened to be an unfamiliar grocery store in Denver. As a result, I was kind of hoping we could get out without a tantrum).

Well, we were all buying candy bars and I had asked Alyssa several times if she wanted one. She always said no, she was getting a movie. But in a last ditch effort to avoid that tantrum, I told her all about how wonderful and yummy those candy bars were. I told her how awesome it would be if she could eat one. After a few minutes, she reluctantly laid down the movie and picked up a candy bar.

By the time we paid for it, she was beaming! She bounced outside and shouted “Mommy! Look what I got!!!”

My mom made a comment about me ‘giving in’ or ‘bribing.’ She was probably right. But when I saw how happy and cheerful everyone was and contrasted that with the alternative of a several hour kicking, screaming, all-out tantrum… I decided I was okay with that.

I also think that was the best spent 96 cents EVER.


Win Friends, Influence People June 15, 2011

Another “Alyssa story.”

Every time I went to the grocery store with Alyssa, I was introduced to more of Alyssa’s friends. Turns out, she knows most of the town. And when she found someone she didn’t know, this conversation ensued.

A: “Hi! My name is Alyssa Barden! I’m 21 and I’m gwaduating from high school. What is your name?”

Random store worker looks up from unloading onions.

“Um… my name is Paul.”

A: “HI PAUL! Can I shake your hand?”

Walks over to where he is and shakes his hand.

A: “It’s good to meet you.”

Continues shopping.

I think I need to take lessons from her on how to win friends and influence 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.”


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.