It’s Happening!!! June 3, 2011

Given the fact that (barring the miraculous), Alyssa will never go to college, get married, or achieve other ‘normal’ life steps, graduating from high school is probably THE biggest event of her life.

And boy, has she made the most of it!

She has been talking about her graduation for months. Every time we were on the phone, she asked if I was coming to her graduation. When she meets people now, her new line is “Hi, my name is Alyssa, I’m 21, and I’m graduating!” She passed out hundreds of invitations to all of her many friends. She is having three parties to celebrate (two down, one to go!). These last couple months have been filled with preparations for Alyssa’s graduation celebration.

And now… it’s here.

Yesterday morning was the senior breakfast and graduation rehearsal from 7:30am to 10:30am. Last night was supposed to be a ‘small’ party at school that ended up with quite the turnout. Friday is a little bit of a breather as we prepare for Saturday’s graduation and party!!!

Graduation is a big step for anyone. For Alyssa, it’s all the bigger as it’s a step we never expected her to make. And we’re going to celebrate every second of it!

Graduation Party Number One: Party with the cousins! (L - R: Shayla, Jordan, and Alyssa!)

Graduation Party Number Two: A glimpse of the party in action!

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.

Graduation!!! May 25, 2011

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.

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.”

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.  🙂

Carly’s Voice May 6, 2011

A friend recently sent me this moving video. It is so amazing to see a side of autism that we may not think about. How each person with autism (or any other disability) is just a normal person, wanting to be heard. They may communicate in different ways or at different levels, but that is also true of every one of us. This video shouted the message I think we all need to hear.

I have a voice.

Don’t worry… it’s in English. =)

What is she thinking? April 27, 2011

So apparently, my mom just left two kids and a dog at a gas station somewhere between Kansas and Colorado. And didn’t notice for close to 20 minutes. Now, I know what you’re thinking. How does someone NOT notice two kids and a dog are missing??

But before you think she’s a completely clueless mother, there are a few factors that come into play. 1. She was on the phone to me (and totally freaked out when she realized they weren’t there)! 2. They never told her they were getting out of the car. 3. Alyssa, who apparently noticed that the kids were on the other side of the gas station, never said a word. Normally, if someone is running behind and hasn’t gotten in the car, she’ll say “Don’t forget —!” or something like that.

Not this time.

I can’t help but wonder what on earth she was thinking?

“Yes! I finally get rid of those annoying kids.”

“I guess Mom must be really sick of them too!”

“Wait. Why are we turning around?”

“Oh, I guess we’re going back! Wasn’t that a great joke???”

I guess we’ll never know what goes through her mind. 😀