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.


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. =)


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.


Ten Things, Part 8 April 28, 2011

I will get through all ten eventually… I promise!

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

Please help me with social interactions.

It’s hard to estimate the life-changing power of kindness and the immense force of rejection. Perhaps better than anyone, special needs families know the strength of just caring.

It hurts to see a little girl who simply wants to be included shut out from the group from those who don’t care enough to make an effort. It makes one ache to see little boys and girls (who truly don’t know better) teasing an older special needs boy… thinking they’re just having fun.

On the other hand, it is pure bliss to see someone who cares enough to try. It doesn’t have to be perfect or easy or even fun. All it takes is try.

So next time you see someone with special needs… don’t ignore them. Don’t try to avoid making eye contact. Don’t patronize them. Look them in the eye and treat them for who they are: a beautiful reflection of God. And know that your simple act could mean the world.


Ten Things, Part 7 April 22, 2011

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

”Please focus and build on what I can do rather than what I can’t do.”

Alyssa is a unique individual with gifts and talents that no one else has.  Just like every other child or adult with special needs.

Of Alyssa’s many gifts (laughter, unconditional love, a great memory, etc), there is one story I love the most.

We were visiting a new church in Kansas.  As always, Alyssa sat and colored pictures during the entire service.  It was (and still is) her practice to design all sorts of pictures to give out after church.  Well, this particular day was no exception.  The problem was, we did not know one single person at this church.

That didn’t stop Alyssa, though!  After the service ended, she made a beeline for the corner of the building about as far away as she could get from where we were sitting.  She found some lady, a complete stranger, gave her all the pictures she had colored, and gave her a huge hug.  By the time we had found her, this stranger was in tears.  She was practically bawling and just kept saying “You have no idea how much I needed this today.  No idea.  No idea.”

It was a beautiful picture of one of Alyssa’s gifts… one I’ve never seen exhibited by anyone else.  She has an uncanny ability to find those who are hurting and minister to their soul without ever speaking a word.

And that is one special gift.