Archive for May, 2011

Summer plans

I am thinking about the summer.

Whatever happened to, “Summer time… and the livings easy…”?

Summer is always a mixed bag for me.  I like the lighter schedule. I like to be spontaneous!

I also hate the lighter schedule.  The lack of structure is hard for the boys.  They become video zombies.  If I’m not careful they can end up playing video / computer games for hours on end, and melting down later.

I’m caught in this tug of war between my rebellion against structure and schedules and my kids’ need for it.

Summer and me:   a love / hate relationship.

There are differences this year, though.  My oldest has a job, so he’ll be out of the house more.  Whew!

Pardon me, but I really need to vent. When my oldest has unstructured time he is very annoying.  Seriously.  It is “entertain me all the time,” and has been since he moved in when he was 9 years old.  (Once he asked a babysitter: “What are you going to do to entertain me now?”)  It is really hard for him to be on his own and do things independently.  One of my nicknames for him is “hover-round,” like the mobility device.  He hovers until he gets my attention. For example, I used to take a step backward and run into him, he was that close behind me! He’s gotten better, but he still stands around and stares at me until he gets my attention, no matter what else I may be doing. And if I don’t drop everything and make him the priority, he will do things like use his dad’s power tools without permission, cut his sister’s hair, start fights, or renovate his bedroom.  (That’s another post.)  I’m hoping that this job has a positive impact on his ability to be independent and work with others! So at least that’s hopefully going to be better this summer.  Okay, end of vent.

My younger son is much more verbal now and willing to try new things. His increased communication makes our days easier. For example, I am the video game tyrant, and he seems to understand this.  He has to play a game with me, do a chore, practice his piano, etc. before he can have anything electronic.

My youngest is much more independent now, and likes to do more “grown up” things with me now– crafty stuff, gardening, etc.  So I think we’ll be good there.

Could this be the summer of fun?

I remind myself that it won’t be all unstructured time. My younger son is going to extended school year (ESY) this summer, which will meet three mornings per week for 4 weeks.  I wondered whether or not to send him, but then remembered that he had a really good time at ESY last year.  The teacher ran it like a camp, and her staff even made a dvd of their adventures together.  He really liked it.  I also enrolled him in a reading camp, which I’ve heard is fun for the kids, to help strengthen his skill as he enters middle school. He loves stories and reading.

But there will be a lot of unstructured time.  I’m dreading it. So, readers, how do you handle summer down time?  I’d love to hear about it!  (In other words, “HELP!”)

Sibling ear cleaner at your service

My daughter adores her brothers.  She draws pictures of them, gets them to coordinate outifts so they can be “triplets,” and plays with them.

The other day she taught Philip how to play a game called Hiss.  We really like that game.  I joined in the fun, and we had a great time.

But I noticed that I had to keep telling her not to arrange his cards for him or tell him where to play.  It’s almost like she’s becoming the older sibling.

Today I turned around to see her using a wadded up napkin to clean out her brother’s ear. She was really into it– sitting really close and concentrating.  “Boy, your ear is really dirty!” she exclaimed.  She was really twisting it, too… there was a lot of wax build up.

(He tolerated this because he was playing a game on the computer.  That computer is magic! He can tolerate almost anything while mesmerized by electronics!)

My response (after stifling a laugh): “Hey!  That’s not your job!”

“Well, it’s dirty!”

“Yes, but not your job!”

“Okay, okay.” (Eye roll.)

I am catching her doing a lot of things that aren’t her job lately, mainly things that her brothers need to do themselves.  On the one hand, sometimes I think it’s really funny, like the ear-cleaning incident.  On the other hand, I am concerned that she is taking on a caregiver role too early.  I am hoping that she won’t really have to be a caregiver for either of her brothers.

So, for you parents out there, do you deal with these types of issues?  How do you handle it?

Making a difference, step by step

If I could make a difference in your life….

These were the words to my son’s solo in his last chorus concert as an elementary student. (Sniff, sniff.)

And boy, has my boy made a difference in my life.  I can’t imagine my life without him. First of all, it was with him that I became a mom.  Every single thing in my life changed when I became a mom.  I could write a whole book on all of those things.  However, I’ll just leave at that– every single thing changed– some things drastically and some things not so much, but change they did.

Secondly, he has taught me so much– to see beauty in small things like reflections in a doorknob, to communicate more effectively, to notice sounds that I may not have noticed before, to be patient– just to name a few.

I think that, because he is in my life, I’ve learned to slow down and not hurry so much.  Of course, there are some days that I feel that my life is like a train speeding out of control, but over all, I’ve slowed.   My son cannot be hurried.

I’ve also learned to separate people from their actions.  The way that people may behave does not equal who they are inside. Someone with a “weird” mannerism may be a genius, I just can’t see it right away.  I’ve learned to be accepting.

I’ve also gained a wonderful community of other “autism parents”, and formed so many friendships that I might otherwise not have had.  And how can I forget the “perks” of the special functions for special needs families? I’ve come to appreciate so much the community in which I live and what it means to be included, and to include others.

The chorus went on to say that change could happen “step by step, bit by bit.”  That’s exactly how my son’s progress has gone.  Every little accomplishment– from saying his first sentence to taking a spelling test to saying thank you– is celebrated.

And now he’s going into middle school.  I am frightened.  As I’ve written before, he will not be attending middle school with his elementary friends.  However, I know that we can get through the challenges step by step, bit by bit.

I hope and pray that others will come along who will make a positive difference in his life for the better, as his classmates and teachers have done.  In fact, I’m counting on it, for it takes a village.  We may just have to look around harder.

Field trip! Field trip!

I had the privilege of chaperoning the 5th grade field trip to Philadelphia. I admit that I was dreading it at first… a bus ride with 40 5th graders?  No way!

But it was a good trip.  It helped that we raised money to charter a luxury tour bus!

The best part of all was that I got to make some memories with my boy.

I witnessed first-hand the compassion and acceptance of his classmates.  When we arrived at our destination, Philip began to stim– flap his hands and vocalize “EEEEE!”.  This is unusual for him to do at school or at school functions, so I knew he was overwhelmed.

His classmates weren’t phased one bit!  No judgment. I did mention that he was overwhelmed, and one boy tried to help him find a quiet space. Wow.

Once my son climbed up the base of a statue to pose for a group picture.  He didn’t know how to get down.  Two 5th-graders offered their hands for him to hold so he could jump.  Then they went about business as usual.  Again, wow.

Yet another classmate sat with my son at lunch and tried to strike up a conversation. He reminded Philip to make eye contact and stuck with him for the whole lunch break. 🙂 Wow!

I will miss these kids next year, as my boy will go to a different middle school.  (YIKES.)  Two of the kids let me know that he will be missed– and one told me that Philip could definitly handle their “regular” middle school if I changed my mind.  Awwww. I wish that our “regular” middle school had the support he needs.

I was very impressed by my son’s emerging ability to self-regulate.  He has always sought pressure on his jaw and chin.  At a gift shop, he saw hacky sacks.  He ran to the bin, picked one, asked me for money, and then went to the register and paid for it all by himself.  Then he used it to give pressure to his chin and jaw.

Wow, wow, wow.  And he didn’t even lose the hacky sack!

My favorite moment, just between the two of us, was walking in a park together.  I told him that I was proud of him and that I loved him very much.

“I love you too, mom.”

Then we both said, “Awwwww!” and put our arms around each other.

What a great day.  My boy is growing up.  Although I am nervous about next year, I am happy that he is maturing and beginning to take care of himself.  I am grateful that he has had classmates who accept and welcome him.

It was a great day indeed.

Trouble again

We had to go pick up my oldest early because he got in trouble at school–again.  He did the same thing that he was expelled for last semester.  Out of respect for his privacy, I won’t share what that was.  I will share that we’re disappointed that it happened again, and that he received another three-day out-of-school suspension.

And yes, he was in the wrong.  And no, we won’t let his autism be an excuse– he knows better.

I said “we”, when actually it was my husband (his Dad) who went to get him.  I needed to think about how to respond.

I did find the lighter side in this.  Rather than throwing a tantrum or blaming when he arrived home, he said that he had a “stressful day” and that he was “mad at [himself].” He’s starting to take responsibility. That’s great progress! For that, I’m proud of him.  I hope it is enough to help him stop and think before he acts next time.

I’m also proud of my husband and myself for not yelling or threatening eternal banishment to the room of doom (his bedroom).  I noticed that I didn’t take his actions personally, either– I’m differentiating!

This does mean some tough days ahead.  For every week that he doesn’t get in trouble at school, he earns two hours of computer time during the weekend. He won’t like not getting his computer time.

We used to keep the school and home consequences separate.  We quickly discovered that he needed the continuity. His behavior escalated at school when there were no home consequences.

For you parents out there with teenagers who get in trouble at school, how do you respond?  Do you punish at home for things done at school?  Or do you keep the two separate?

I’m hoping for more restraint on our part and more responsibility on his.  I am hopeful that he will become a responsible adult.

Investigators

I try very hard to have a non-distracting learning environment when I teach clarinet.  Each lesson day, I become an “investigator” and try to “sniff out” distractions and eliminate them. I make sure that all trash is thrown out, newspapers are in recycling, toys are put away, and books are on the shelves.   Since my students are on the autism spectrum, making my living room /office / music studio non-distracting is challenging, especially when I’ve changed things around.

My little musicians can sniff out change like little hounds.  They become little investigators, solving the mystery of why and how things are different.  They miss nothing.  They don’t rest until the mystery is solved.  Sometimes they are nostalgic, and reminisce about the good old days when that green notebook with the scribbling in the front cover was on the coffee table.

During our spring break, I made some changes in my living room.

I replaced an old desk and a pile of junk with bookcases.  I hung curtains over the bookcases to hide the clutter minimize distractions. I painted my small desk, which was drying in the garage on lesson day. The clutter supplies that were organized in my desk were hidden behind some folding screens.

Voila! Distractions, be gone!

I was satisfied. The room was conducive to learning the wonders of music and the magic of the clarinet.

Foiled again!

My students investigated the changes right away. B exclaimed, “Whoa, look what I missed! Where’s the desk?  Where’s that table?  What’s behind there?”  When D arrived, he said something like, “Hmmmm…. what do we have here? It’s blue.”  Each boy investigated the mystery of the hidden items behind all of the curtains and the folding screens before his lesson.

Just to show off his investigative prowess, D also discovered that my cordless phone was not where it belonged and proceeded to put it in its place. I shook my head in wonder that he knew my house well enough to do that.

I patiently let each boy investigate.  They needed to get past the distractions so they could learn.

B only took a couple of minutes. I explained that I was reorganizing because my living room was now also my office / music studio.  He was satisfied with that and said, “Let’s get this show on the road.”

D needed 10 minutes–a third of the lesson time!  I was watching the clock, but D would not be rushed.

Both boys had great lessons.  I was proud of both of them.

This just reminds me that I can’t pull anything past my little guys.  They are on me like white on rice.  And that’s okay.  I think that their attention serves, and will serve, them well. I know that once they do what they need to do, i.e., investigate, and feel secure in new surroundings, that they will work really hard for me.

It also reminds me that clutter can run, but it can’t hide. 🙂

What would you do?

I was at a kiosk getting photos developed at a Walmart when the store manager informed me that if my son kept “doing that” we’d have to leave the store.

My question: “Doing what?”

I thought that my son was around the corner looking at movies. Instead, he was climbing up on the shelves and riding exercise bikes. He was being unsafe.

Apparently, a Walmart  “associate” witnessed this, and instead of approaching me, went and got the manager.  The associate pointed me (and my husband, who was nearby) out to the manager, who gave me this ultimatum.

The manager informed me that my son had been on the bikes for several minutes, and seemed to think that I knew about this.  I did not.

Immediately, I went to get my son.  I agreed that he was being unsafe, and assured the manager that if he kept climbing the shelves we would of course leave the store.

Then I asked if the associate or manager had personally approached my son and asked him to get down.

Of course not.

I asked the manager if the associate had approached my husband, since he hadn’t approached me and he obviously knew we were the parents.

Nope.

Then I asked why the associate didn’t approach us rather than going for the manager to get us kicked out of the store.

Silence.

Thank you for shopping at Walmart.

I asked my aunt, who works at a different Walmart, what she thought.  She told me a story of how an associate told this boy to get off of the bikes, because he could fall and get hurt.

The mother, who was at the other end of the bike aisle,  yelled at the associate– “Don’t tell my son what to do!  He is my child… you have no right…” and demanded to talk to a manager.  The manager came out, heard the story, and reprimanded the associate.

My aunt thought that the associate in my case was probably afraid that if he approached my son or myself, he could lose his job.

Sad.

What happened to the village?  What happened to watching out for kids and each other?

I don’t know.

But I am grateful when others mention something to my kids, or at least to me, when they are being unsafe.

Once at a school event I looked up and  saw my son climbing the stacks of cafeteria tables and chairs.  I couldn’t get to  him through the crowd.  A fellow PTO mom saw him and got him down. Then she saw me in the back of the room, caught my eye, and apologized.

No apology necessary… thank you!

Once a stranger at a store saw my son run away from me and blocked the door.

Thank you again!

Having a child with special needs has taught me to appreciate so much more the value of the village.   Especially when I have more children than I do hands.

How do you feel about the “village”?

How to be a friend to an autism mom

On my local Autism Society listserve, a fellow mom shared the post about How to be a Friend to an Autism Mom. The author, Susan Walton, who also wrote the book Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism.  I will be getting  a copy soon!  In the meantime, enjoy Susan’s article.  Happy Mother’s Day!

How to be a Friend to An Autism Mom

Some find it can be tricky to know how to act when a friend’s child has autism. “It’s so hard to know what to say! How can I be a good friend? I seem to say the wrong thing every time!”

And then, some autism moms report a frustrating breakdown in communication, friendships that disintegrate, or wounds that they nurse in silence.

We all need some help because we need these friendships. Here’s some advice for everyone who is near and dear to a mom whose children have autism. Consider it a “friend’s guide,” or, if you take it to heart, the best mother’s day gift you can give.

Do NOT offer pity.

Nothing makes a girlfriend want to run off and take a shower (and then stay far, far away from the source of the filth) like genuine, heartfelt pity.

“You poor thing, I feel bad worrying about my (plumbing problems, child’s broken wrist, difficulties at work) when I think of you!”

Of course your friend has it rough. But pointing that out and covering her in “You have it so much worse than me” slime only serves to rub it in.

Do NOT attempt to provide inspiration.

Don’t tell her about the person you read about in the paper who performs on the piano or the family whose child is “completely recovered.” Whether it is savantism or cure (or any other amazing gift of good luck), the reality is that most people with autism will not develop skills that allow them to “triumph” over their challenges, and recovery is as unlikely as lightning. Try to imagine telling your friend whose house just went into foreclosure about the woman in the paper who won the lottery. Would that help?

For every instance of those rare things happening, there is a reporter waiting to rave about it and a further five people sending the article to your friend. You don’t need to be one of them. She may be struggling with her child’s potty training, sleeping problems, lack of speech, intense unhappiness or daily living skills. Her child might grow up to be challenged to play the radio for an audience without driving them crazy by changing the station every three seconds. Trust me when I say that she will not feel inspired by the teenager with autism who plays concert piano.

Do NOT give advice.

If the parent of a child with autism is in the market for information, there is a great deal to be had. Most of it is garbage. You may read about secretin, chelation, elimination diets, or lyme disease. And there is credible information like new research underway. But assume that your friend has access to the information that you have access to, because she does. Forcing her to express gratitude for the exciting news that a new snake oil has arrived on the scene, or having to debunk it for the benefit of someone who doesn’t really need it anyway is trying. Instead, be her respite from that part of her life.

Do (Please, please do) offer kindness and solidarity.

You may not know what this hardship feels like, but presumably you know what some hardship feels like. You want to strike a chord of “I know I can’t truly understand this, but I’m behind you all the way. You go, girl!”

DO (Please, please do) listen.

Tune in and find things to ask questions about as if you are paying attention. “Last time we talked you were working really hard on getting insurance to come across. Any luck?”

DO (Please, please do) stay put as a friend.

Maybe your kids don’t really like playing with her kids, but you can make them. Really, you can. You can insist. Eventually they will either find that they are enjoying it more than they thought they would, or it will be over. It is good for your kids to learn kindness and patience. It is good for her kids to play with your kids who don’t have autism. But only you can make it happen.

DO (Please, please do) be patient.

It is entirely possible that your friendship will seem different, especially during the early years after a diagnosis. Maybe all her new friends have kids with autism and you feel weird, out of place. Maybe she has a tendency to cry over coffee. Work through it. She needs you. And someday, when you need to find a specialist for your child, you will call her first because she is so darn plugged-in to the local medical community and you can trust any recommendation she makes.

Susan Walton is an adventure seeker and the Northern California mom of three children. She is the author of Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism. It also gives real-world advice to friends and family about being part of the fun. On sale now at Amazon and wherever books are sold. You can follow her on twitter at swalton47.

First weekend away for my boy

It’s coming up!

Soon, my son will be going away to a camp with Easter Seals.  It will be his first time away from us without a family member or family friend present.

It will also be my first time to let him go. I’m a little nervous, and a little excited.  I’m also wishing that the weekend was totally free otherwise, since my older son will be working.  Free time with the hubster!  What would we do?

My husband and I told Philip about this, preparing him in advance.  I wasn’t sure how he’d react.

This is how our conversation went:

“Philip, you’re going on a vacation!  Without us!”

“Oh, you mean, with Josh?”

“Nope, Josh is working.  You will go all by yourself.”

“But how?  I can’t drive!”

“We’ll drop you off, then pick you up when it’s over. You’ll be gone two nights.”

“Oh.”

Pause.

Then he said, “Well, sorry Josh and Margaret and Mom and Dad, I am going somewhere else to live!” He didn’t sound upset about this at all.

We said, “Only for the weekend!”

We proceeded to talk about camp, the fun he’ll have, and how we can hardly wait to hear about it when we pick him up. He was smiling the whole time.

Seems like the parents aren’t the only ones looking forward to Philip’s independence.  He’s excited, too.

The weekend of camp will be a busy weekend for the rest of us.  I’m speaking at my church, Josh is working, I have a Wildtree party.  It’s supposed to be a “respite” weekend, but I have a feeling that I’ll be very tired.  However, it’s good that he won’t have to deal with all the busy-ness, and he’ll be off having fun.  And maybe my husband and I can sneak in a date, as we will celebrate 12 years of wedded bliss!

Sex education

I really like the show “Modern Family.”  My 7-year-old daughter happened to be with me last time I watched it.

It turns out that the kids “walk in” on their parents.  Of course, they are traumatized. One daughter even washes her eyes out to try to get rid of the image of what she just saw.  She and her sister, who are the older ones,  try to “shield” the youngest from knowing what happened.

The youngest kid says that he knows what sex is… it’s when people “take off their underpants and climb in bed together.” (Check out the episode here, if you’d like.)

I was trying to turn off the tv while this was going on, and the remote wasn’t cooperating with me.

My daughter said, “Take off their underpants and crawl in bed together?  AWESOME!”

Huh.

She asked, “Did you and Dad do that one time?”

I must have looked like a deer in the headlights for a second.  Then I remembered that honesty is the best policy… and I’ve read all those parenting magazines.

So, I just said, “Yes.”

She then asked, “Do you still do it?”

I said, “Yes.”

And she said, “You do? Even though you’re old?”

!!!!!!!!!!!!!!!!!!

I explained to her then that it was something married people do, and it was private.

(In other words, please don’t go to school tomorrow and tell everyone that your mom and dad take off their underpants and crawl in bed together. )

Told you it was an unusual week, fraught with spring fever!

Have you had the conversations with your kids?  How did you handle it?