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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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.

 

Dark after morning… June 11, 2011

After the morning, comes the night.

Wait, that’s not how it goes? Oh well, it’s how life works sometimes.

After all the parties, celebrations, amazing time with family, and the crowning accomplishment of Alyssa’s life… there had to be some repercussions. 🙂 And there have been. It hasn’t been absolutely horrible and it’s pretty understandable. Alyssa was completely worn out from all the visitors and parties. (As you’ll see when I finally post some pictures, she looked pretty shell-shocked with all the busy-ness).

So on Tuesday morning (the day after all the company left and life finally got back to normal), Alyssa woke up on the wrong side of bed. We had to go to Denver for Alyssa’s doctor appointment that day. Problem: Alyssa refused to go. She was fine when we got in the car to head down to Denver. But once we got there, she wouldn’t budge any farther than a few feet from the car. The tantrum continued for several hours before she got over it.

On Wednesday, she was just generally cranky. The last couple of days have been better, with just a periodic meltdown.

Well, all that to say… you never know what the day will bring when you have a special needs person in your life! 🙂

 

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.

 

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.