And a door is opened ...

Sharing is a good thing. As a result of you liking, commenting and sharing my sister's guest post of tips and advice for the extended family of a child with autism, the executive director of Family Connection, Jackie Richards, has invited my sister to serve as guest blogger on their site.

Family Connection is a nonprofit organization which links families of children with special healthcare needs/disabilities with resources, support and education.

Reaching out, loving, supporting ... life the way it is meant to be.

Grazie,

Maria



Puzzle Pieces (read and share tips for the extended family of a child with autism)

Note: This is so beautiful, insightful, and helpful that I don't want it to be limited to my blog. So if it has touched or helped you in any way, can you please share? It might help someone out there ...

Puzzle Pieces: Tips for the Extended Family of a Child with Autism

I am not Bia.  Bia is my sister – my awesome sister! – and she asked me to write a guest post for her blog.  Why?  Because April is Autism Awareness Month, and the youngest of my three sons has autism.  When she called to talk to me about the guest post, she seemed to be struggling to express her idea.  “Can you write something about how we can help?” she asked.  “When the families are together, I want to help you with Peter, but I never know if you want the help,” she continued.  “When would you prefer to handle things alone?  What should we say, or – for that matter – what should we not say? What can we do to make things easier for you guys?”

I can understand her confusion and frustration.  Autism is an extremely puzzling disease, which is why the puzzle piece has become a widely known symbol for autism spectrum disorders.  Recent statistics indicate that 1 in 50 school-age children are affected by autism.  This fact is staggering and alarming.  What makes things worse is that the disease is different for every child, and every family struggles with different issues.  There is no manual that would be helpful for all families who face autism.  However, I can speak for my own family, and maybe some things that work for us might work for others.  So here is my attempt at offering tips to those who have a child with autism in the extended family:

To Help or Not to Help

You watch as your sister and brother-in-law face a difficult situation with the child.  The exact issue does not matter; you just want to know if you should step in and help.  A simple rule of thumb would be this:  help when you are asked to help.  If I say, “Bia, can you help?” I know that you will jump up immediately.  But if I don’t ask, it means we have the situation under control.  This might not be the case for parents who find it difficult to ask for help.  It took me long time to learn to ask for help without feeling as though I am imposing on someone.  But I have learned that I can’t “do it all” if I want to remain in a healthy place physically and emotionally.  So I promise that I will ask for help when I need it.

Should We Offer to Babysit?

You worry that your loved one might be insulted if you offer to babysit, as if you thought they couldn’t handle their own child.  There was a time when I thought I didn’t need a break; that I could handle everything.  If I left my child with a sitter, even if it was a family member, I felt guilty for taking a bit of time for myself.  I even felt that nobody could care for my child as well as I could, so I had no right to give that responsibility to someone else.  I have since learned that those attitudes were detrimental to the well-being of our entire family.  EVERYONE needs time away from care giving in order to refresh and renew.  This is called “respite” and studies have shown that periods of respite are beneficial not only to the family care givers but also to the child. 

So the answer is:  Absolutely!  Offer to babysit!  I may not take you up on the offer immediately, but I’m pleased to have the option.  There may be a reason why I refuse the offer at the moment, but keep offering because it is greatly appreciated.

The Best Time to Talk

Sometimes I just don’t want to talk about it.  That is the plain truth.  Parents who have a child with autism are constantly bombarded with information and advice, questions, statistics, studies, doctor’s reports, therapies… it’s hard to find a moment when autism and its effects are NOT on your mind.  It is exhausting.  There are times – like on a holiday, for example – when I just want to enjoy being together with my extended family, to relax, and not have to be in my “autism advocate” role.  You might think that a family get-together is a perfect time to catch up on the progress the child has made, or to discuss controversial therapies, new studies, alarming statistics.  But try to resist asking too many questions around a dinner table.  When that happens, I personally feel like I am on trial and I immediately stop enjoying my meal.  There will be other opportunities to catch up on the facts.  If I offer some information without being asked, that’s a clue that I am ready to talk.

Carry on Like Normal

We recently celebrated Easter Sunday at Bia’s house.  During the meal, there was a potty training “incident” with our son, and it took me and my husband about 20 minutes to get everything cleaned up and settled.  When we returned to the dinner table, everyone was carrying on with the meal and the conversation as if nothing had happened.  I truly appreciated that.  Nobody made a big deal about the incident, and I was relieved.  Sometimes we just wish everything were “normal” and when family members take things in stride without making a big deal about them, it makes things just a little bit easier.

What NOT to Say

I hear it all the time.  “This is Mary.  She is autistic.”  “Joey is autistic.”  That word – autistic – bothers me.  I am not denying the diagnosis.  My son has autism.  But he is not “autistic.”  Autism is a disease.  The word “autistic” takes the disease and turns it into an adjective.  If someone has cancer, do you say, “This is Lisa.  She is cancerous”?  If someone suffers from dementia, do you introduce him by saying, “This is Jim.  He is demented”?  Of course not.  Saying that a child is “autistic” sounds as if you are defining the child by that adjective; that you are describing him or her with that one word – a word that carries with it some very inaccurate stereotypes.   How can anyone’s personality be described with one word?  My child’s personality is made up of many different characteristics – some good and some not-so-good.  When introducing him to someone, rather than saying, “This is Peter.  He is autistic,” I say, “This is Peter.  He is four years old.  He’s a happy, very busy little guy.”    In the course of the conversation, I may eventually say, “Peter has autism,” but I choose not to define him as primarily “autistic.”  It’s a meaningful distinction.

Be Aware and Reserve Judgment

I can remember, in years past, seeing a child misbehave in a grocery store and thinking, “What a brat!  That parent needs to do a better job disciplining that child.”  In the process of learning more about autism during the past four years, I have also learned to avoid being judgmental about a child’s behavior.  I am not as quick to jump to conclusions when I see a child “acting out” in public.  Remember – one in every 50 children you see may have autism.  You never know what might be at issue with a child or a family; you never know what struggles they might be facing.  Some children are extremely sensitive to light and sound or any kind of visual or auditory stimulation.  Imagine how torturous it would be to go to a grocery store if you felt as though you were being bombarded with images and sounds.  You would be frightened and overwhelmed and would just want to escape.  The distress would be compounded if you could not speak and could not express what you were feeling.  So, please – the next time you see a child “misbehaving” in public, say a quick prayer for that family and reserve your judgment.

There are many more issues that could be discussed regarding autism; there are a multitude of pieces to this puzzle.  But it is my hope that at least some of what I’ve written here will be helpful to other families who are struggling with the same issues that we are.  I have to say, though, that one of the best gifts God has given us is a family that is supportive and caring, and always there when we need them.

-          Laura Townsend Kane, parent of a child with autism

Exodus

The day before THE EXODUS, and things kick into gear.

For those who don't live in this area, there is this little tournament called the Masters which not only puts our city on the international scene for a week, but it also generates income for those of us who rent our homes.

It's a nice gig, but it is a lot of work. I feel as if I have been cleaning for a month. The plus side is that every year our home gets a spring cleaning like you wouldn't believe.  Windows are washed, new pine straw is spread, and hanging ferns adorn the front porch. Closets, drawers, and cabinets get purged. Clothes and toys get sorted. Baseboards, ceiling fans, walls, stair risers, and door frames are wiped and dusted.

Mr. Clean Magic Eraser is my best friend.

Since we leave tomorrow and it's hard to clean with people who undo what I have just done, the boys are spending tonight with i nonni so I can finish every room completely and then just deal with the master bedroom in the morning.

I'm telling you it takes orchestration. Think I can't run the country?

Of course, there are always last minute problems. Last night the company renting our home called wanting to make sure that a) we have propane in our gas grill (we do!) and b) dry wood for our fire pit (uh, oh).

Guess what three somebodies will be foraging the woods behind our house and gathering firewood this morning?

So, I really need to quit blogging, finish my cappuccino, and get swiffering.

Oh, did I mention that I also changed out all shelf liners?

P.S. If you want to find out how in the world I rented our home after just giving birth the week before, go here.

Life Lately: Interior Design, Fashion Advice, and One Entertaining Tip (in 7 quick takes)

 

Interior Design (what NOT to do)

~1~ Jesus and G.I. Joe ... I'm not feeling it.

~2~ Bob the Builder isn't working, either.

Fashion trends that don't work (at least for me)

~3~ Asymmetrical hems. Just looks like a bad hem job.

~4~ Cap sleeves. Either do a sleeve or don't. Cap sleeves are rarely flattering.

~5~ Side pockets in pants. Really, who needs extra saddle bags?

~6~ Empire waists. All the rage now, but not flattering for the busty.

 

Entertaining

~7~ Cloth napkins ... use them. It makes a world of difference. I recently hosted a dinner for thirty people, and it took me just ten minutes to iron thirty napkins and scrunch them into a napking ring.

Now, go visit Jen at Conversion Diary. She could use some prayers ...
 

I'm thinking he was hungry during science class ...

"Mom," says our little guy when I pick him up from school. "Today I thought that Jupiter is like a Hot Pocket."

I am processing this.

"You see," he continues. "The white clouds are like mozarella, the Great Red Spot is the meatball, and Jupiter's orange and red color is the sauce."

He's very proud of himself. It's a major scientific observation.

pilot (or astronaut?) in the making

How I Survived the Boy With the Golden Teeth (and other tales of a first year teacher)

So, there I was a first year teacher, excited and full of plans … and I didn’t have a classroom. I was what they termed a “floating teacher”, which basically meant I used classrooms that were empty for an hour because it was the teacher’s planning period. It was a lousy situation. Not only did I have to change classes with the rest of the students, but I had to lug all my books, supplies, and teaching aids through the crowded hallways. I did have a desk and a small filing cabinet, but they were nestled in the corner of the faculty lounge.

It was an inner city school with some very rough students … students like S. Washington and K. Weed, both of whom spent a good portion of their high school career suspended, or in detention.  S. Washington was a black student with two gold front teeth, and on each tooth was engraved a Playboy bunny (no, I am not kidding). K. Weed was a white student, tall and skinny, who got into more fights than anyone in the entire school. Needless to say, both S. Washington and K. Weed had reputations, and for some reason I got stuck with them both. They weren’t in any of my classes, but they were assigned to my homeroom/study hall. Every day for forty minutes those two boys made my life a living hell. Eventually I had it. I may have been the new teacher, but I marched into the principal’s office and demanded he get those two out of my study hall or else; he must have realized I meant business because the very next day he reassigned them to a study hall with a ROTC instructor.

But oh, the stories I could tell about that first year.

There was the girl in my literature class who seemed attentive and seemed to be taking notes, but I eventually discovered she was really watching soap operas from a tiny portable television she kept hidden in her oversized purse which she kept perched on top of her desk. I mean, really?

Then there was the student who loitered outside my classroom for five minutes talking with friends and then, two minutes after the tardy bell rang, asked if she could go to the bathroom. When she was told to wait until the end of class, she got up and walked out. Just like that. The next day at a parent conference, during which her Mom yelled at the principal about her daughter’s so-called “bladder condition”, her detention was inexplicably revoked.

Of course, not all students were problems. Some were just annoying, like the senior who was smitten with me and drew hearts all over his test papers. I sometimes joke about having been asked to the prom during my first year teaching and, well, this was the boy. He was harmless enough, and mostly I ignored him, but he was so open about his crush that it was getting embarrassing. Things improved slightly when I got married that December after which he just sat around moping and writing poetry.  

But within all the drama of teaching in an inner city school, there were also some incredible moments.

In my junior literature class I taught a unit on Arthur Miller’s The Crucible. I had found a box of battered paperback copies of the play, and every day I lugged that box to class so everyone would have a copy and we could read it aloud. As a teacher, there is nothing more gratifying that seeing your students excited about something, and these students were excited. We had some wonderful discussions, and for the first time the students in that class interacted, discussed, and voiced an opinion. Remember my soap opera student? She was in this class and she loved The Crucible.

Perhaps some of my favorite moments occurred with the fifteen students in my Spanish III class. The highlight of the year was a county-wide foreign language competition featuring skits, songs, and poetry performed in the different foreign languages. My students decided to do a spoof on Gilligan’s Island, and they worked hard writing the script in Spanish, designing the props, and translating and choreographing the opening theme song. Added to their work load was the fact that our school was hosting the competition, and they spent many afternoons helping us prepare. As it turned out, my students came in first place, and I was so proud of them. The next Monday, as I was working at my desk in the faculty lounge, they announced our win over the intercom and all the teachers in the lounge began clapping.

That first year was all about extremes: highs and lows, with very little in-between. It was not an easy year – and believe me, tears were shed – but in the end I learned a lot about myself, from both my successes and from my failures.

Sometimes I wish I could go back and do it over again … but without S. Washington and K. Weed.

Let’s leave them with the ROTC instructor, shall we?

 

Sometimes you just need to know what to say ...

In the course of my work I get to interview some truly inspirational people from all walks of life, and during dinner I like to tell my family about them. Last week it was the story of a priest I had interviewed earlier that day.

It was a good story -- a great story -- and although the boys were listening, they were also so busy eating that no one was really responding.

I shared a few more interesting facts. They nodded politely and kept chewing.

But I had saved the best for last.

"Oh, by the way," I said. "He's also the official team chaplain for the Cleveland Browns."

Everyone stopped chewing and looked up.

Really? The team chaplain ... ? Does he go on the road ... ? Has he ever met ... ?

I smiled.

Something told me that little fact would get their attention.