Monday, September 14, 2015

Letter to My Nieces and Nephews on Autism

This summer we were getting ready for a family reunion.  It had been ten years since the entire family was all together at once.  It was three years since my kids had seen all of their cousins. The last time we had an unfortunate incident with an unfiltered comment, a hug that lasted a second or two too long and an attempt to break into a conversation by hovering and following cousins around.  That story will be found in another post.

We all wanted this family reunion to be great.  It was to celebrate my parents' 50th wedding anniversary and I in particular was nervous about how my kids would be perceived.  I thought about discussing things with my sisters to pass on to my nieces and nephews, but then I though something might be lost in the translation.  I decided to write the following letter and prepare a questionnaire to get them thinking about some possible talking points.

The letter:


Dear nieces and nephews,

I wanted to write a letter to you before we all gather for our family reunion.  We are looking forward to seeing each of you in just a couple of weeks.  I realize because we’ve lived away for so much of your lives, you don’t know your Munchkin cousins as well.  I hope the questionnaires I prepared will give you a jumping off point for conversations with each other.  Two of your cousins attend a magnet school for the arts in our county.  Another attends the STEM (science, technology, engineering and math) school.  He currently wants to be a bio-engineer.  They have played in county orchestras, participated in Math Counts, and robotics clubs.  (It’s up to you to figure out which is which).  

The older boys are involved in scouting.  Firstborn has his Eagle Scout rank and one bronze palm.  Whirlwind needs two more merit badges and his project to become an Eagle Scout.  Lawboy needs one more (at this time) merit badge for Life Rank and needs a project.  Princess Ballerina loves dance.  She has been in the Nutcracker as well as the spring ballet, though this year she chose to not participate as the rehearsal schedule interfered with church.  Acroboy has just started Cub Scouts and often forgets to put on his glasses.  BabyGirl is our youngest and a bit mischievous, and Firstborn, Whirlwind, Lawboy and Acroboy are all extremely high-functioning on the autism spectrum.  

We’ve tried very hard to not let this define them.  There are certain things that come with being on the autism spectrum though that are noticeable.  I am hoping by writing you this letter, it will increase your understanding of your cousins and encourage you to learn and do more in regards to autism.  

Sometimes the filter that stops us from talking at inappropriate times, or saying something that might seem rude doesn’t work.  My boys have worked really hard to learn the social rules that seem intuitive to most people, though sometimes they might blurt out or say something rude or unsuitable for the situation.  Most of the time you should know that they are trying and ignore it if it happens.  If it really bothers you, you can talk to them directly, or if you are uncomfortable doing that, to me.  

Finding good ways to enter a conversation is trickier for someone on the autism spectrum.  If you see them hover near you, or thinking they are eavesdropping chances are one of two things is happening.  1) They are trying to work up the courage to talk to you.  Conversations with people they don’t know as well can be a bit intimidating.  It takes more courage for them than the average person.  2) They are hoping to hear something you say they can pick up on and enter the conversation with.  For instance you might start talking about the latest summer movie blockbuster and they can give their opinion on it if they’ve seen it.  If you see them hovering near you, do your best to draw them into the conversation.  They would like to know you and you can help by trying to get to know them.  

Once they are in a conversation with you, they might start bringing that conversation back to a favorite topic of theirs.  Minecraft, Roblox, Mario Brothers, are just a couple of possibilities.  Going back to a favorite topic is a method they use to safely navigate conversations.  If it is familiar, there is less chance they’ll have their “filters” fail and have awkward moments in their conversation.  You can find ways to help them branch into other areas.  An example might be Acroboy talking about Roblox.  You can go from Roblox to other games on the computer to other games in general, and then games in gym, and finally what types of things does he do for physical activity?  

Sometimes when you are in conversation with the boys, you may notice them standing a bit closer than other people do.  The filters that tell most of us appropriate distances to stand from someone can misfire in those with autism spectrum.  Paradoxically, they might notice you are in “their” space while they don’t notice themselves infringing upon yours.  We have a code phrase, “watch your bubble”, to remind the boys that they need to watch their spacing from others.  

Lastly, sometimes they might not pick up on facial expressions or subtle body language.  If there is an issue, let’s address it directly and succinctly.  Using the above example, you might say, “Lawboy, your bubble is invading mine.”  Making faces or using body language in hopes they will get the hint doesn’t work nearly as well as addressing things head on.  If Whirlwind says something a bit odd, ask him, “What did you mean by that?” or “Is that the phrasing you really wanted to use?”  Or simply, “Could you not say things like that?”  We all appreciate directness and patience.  

These boys are awesome kids.  I couldn’t be more proud to be their mother.  They have such huge hearts and generous, courageous spirits.  I have learned so much from them.  I hope you will too.

Lastly, they’d really like to know more about you too , so please take time to look at the questionnaire I sent your moms.  Feel free to add whatever information you'd like others to know.  I love you all and can't wait to see you again.

Aunt "Mom to My Group of Munchkins"


The Questionnaire:

Family Reunion Questions for Teens:
Something you might not know about me:

My favorite book is ____________________________________________
And here’s why:_______________________________________________________________________

The last movie I saw was: ____________________________________________ I thought it was_____________________________________

My favorite subject in school is:_____________________________________________________

My best subject in school is:_____________________________________________________

My favorite Disney character is:__________________________________________________________

My favorite food is:____________________________________________________________________

Finish these sentences:
My thoughts on Harry Potter are:_________________________________________________________
Chocolate is___________________________________________________________________________
The best kind of music in the world is:____________________________________________________
The best band/singer is:________________________________________________________________

If I could pick from flying or invisibility as a super power, I would pick ___________________ because:

I’m really good at:___________________________________________________________________

I have to work at:____________________________________________________________________

My extracurricular activities at school and home include:______________________________________

I have/do not have an after school job.  It is at_______________________________________________

My dream job would be:_________________________________________________________________

I plan on studying to be (career) :__________________________________________________________

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