Archive for February, 2011

Childcare swap

Babysitter?  You’ve got to be kidding!

The costs have gone up since I was a kid, finding someone we trust to care for the kids is difficult for me and my husband, and just finding someone willing to watch autistic kids can be a challenge. Plus I don’t want to “burden” my friends with kids on the spectrum, either.

So what was I to do when I really really really wanted to take my hubby out for his birthday?

I made arrangements to do a childcare swap with another friend couple who has two kids, one on the spectrum.  (I figured we could both be “burdened” for one evening, LOL!)  My oldest went to grandmas, while my younger two had fun with Mr. and Mrs. D and kids.

There were a lot of preparations.  My friend made sure that her husband was off work so he’d be there to support.  Good call!  We went over the gfcf diet and I provided my son’s food and snacks for the evening. We brainstormed ways to keep my tomboy girly-girl occupied.  And then we just went for it.

It was great! My kids didn’t want to leave!  Their kids didn’t want my kids to leave! But unfortunately running away with hubby for the night was out of the question!

We returned the favor a couple of weeks later.  Same type of preparations regarding snacks, activities, etc.  We had a lot of fun.  I learned a lot about WWII submarines that night.  Never knew that my house  could have so many decks, and I learned to salute.  Things that kids can teach us! Sometimes autistic perseverations are very interesting!

I look forward to doing this again.  I’m already thinking of fun things to do.

This is just one of the reasons why I like my community. Autism is pretty common around here, and other parents are very supportive– even those who have kids who aren’t on the autism spectrum.  I am so glad we live here.

Hair cuts

Recently I told Philip that I was going to get Daddy to cut his hair.

He thought about this for a moment.

“But Daddy’s not my hair cutter.”

“Who is your hair cutter?”

“My hair cutter is Miss Andi.”  Pause. “When Daddy cuts my hair, he cuts all of them.  Miss Andi cuts only some of them and then it’s not so itchy.”

Well said.  Have I mentioned before that I love it when he uses his words? 🙂

Philip definitely prefers Miss Andi, and for good reason.  Daddy does an all over buzz cut.  Miss Andi buzzes only the sides and back.  She cuts the top with scissors.  Miss Andi’s cape also stays closed all by itself.  Daddy has to keep his cape closed with a clothes pin.

There are other perks to going to Miss Andi’s, too:

  • Gracie, her cute little dog, sits on his lap when he gets his hair washed.
  • Miss Andi has a spinning chair that moves up and down, and a mirror for making funny faces.  Daddy has Philip sit on a step stool in the garage.  Enough said.
  • Miss Andi has a special sink with a sprayer for washing hair,  a “tickle-y” brush for getting the hair off his neck, yummy snacks and drinks, and a special timer.  Daddy has Philip go wash his own hair and Philip only gets special snacks and drinks if he sits still.
  • Miss Andi has a timer.
  • Miss Andi’s timer rocks!

Cell phone photo by Elizabeth Givler 🙂

Cutting Philip’s hair has not always been easy.  (Same for Josh, who used to run out of the house at the sight of the clippers.) A hair cut was endured, usually with one parent holding the crying boy’s  head still while murmuring comforting things, and the “hair cutter” working as quickly as humanly possible.

Miss Andi has found what works for Philip.  She lets him play with her timer while she cuts his hair.  It is actually three different timers on one device. Philip obsesses perseverates focuses intently on the numbers, and before he can say “Hey, what are you doing?!?”  his hair is cut and he looks so darn cute.  Hooray, Miss Andi!

Holding ear down for Miss Andi while looking at the timer. Photo by E. Givler

Going to Miss Andi’s is a family affair. I love it when she highlights my hair– my hubby says I look hot :-).  Meg likes being pampered (since she was two years old… wash, condition, cut, style, blow dry… the whole shebang).   Philip and Meg like playing with her adorable children.  Since it’s a home based salon, chances of seeing her kids are pretty good.

Meg getting pampered by Miss Andi. Photo by E. Givler

Miss Andi is one of the few “hair cutters” who “gets it.”  I am thankful for people like her who are patient and understand that Philip is not misbehaving when he has sensory issues.

People like Miss Andi make my family life easier and, more importantly, give me hope.  She’s not only our “hair cutter.” She’s also our friend.

You can call me anything, as long as it’s nice

Autism is literal.  I found out how literal when my stepson moved in with us when he was almost 9.  It was a sudden thing.  We has just moved, and were still unpacking… and here he came.  (See my first post for more info.)

Josh was unsure of what to call me.  I could sense his struggle over this, as well as the greater struggle of what to name my role in his life.  I gently let him know that he could call me anything…  as long as it was nice.

See, when he first moved in, he cussed like a sailor!  Thus, the qualifier.

He tried out different names for me, all of them “nice.” For the first two weeks, he called me “sweetie pie.”  It was a start! Later, he tried out different names. Sometimes it was “honey bunches of oats.”  Once he copied my husband and said, “Come here, Wife.” (That didn’t happen again, LOL. We explained what “wife” meant and that I definitely was not his.) Other times it was simply “Elizabeth.”

Finally, he just settled on “step mom.”  It worked.

People were shocked that I was okay with this.  However, there are several ways to think about it.

First, it’s the truth.  I am indeed his stepmom. (Autism is literal, after all.)

Second, he wanted to acknowledge me as a mom without betraying his bio mom. (Great problem solving skills!)

Third, it’s a whole lot better than other things he’s called me when he’s angry.  Believe me.

Fourth, it makes perfect sense in the context of our family. I’ll explain:

When his dad married me almost 12 years ago, Josh was 3.  My husband explained to him that I was his “step mommy.”  Here’s the definition my wonderful, genius husband  taught him:

Step mommy = When Mommy’s not here, Elizabeth will “step in” for her and take care of you. See, I told you– Genius!

I remember the day that Josh learned this very clearly.   Suddenly, I was accepted by this literal little lad.  I was putting his things in my purse when he didn’t want to hold them, holding his coat, getting him a drink, and more importantly holding his hand and comforting him when he fell down at the playground.

When he moved in, and his mom wasn’t here, I stepped in.  I was, and am, his stepmom.

Now Josh is 15 and is looking forward to his first job. He just loves to flaunt the fact that he is taller than I am.  We still struggle to define our relationship as we adjust to the daily changes and challenges life brings.

My hope is that he will always remember that he can call me anything as long as it’s nice, and that I’m here for him.  My hope is also that I will remember how far he has come in his life, and to celebrate the milestones with abandon. Literally. 🙂

Epilogue: I don’t know if Josh read this or heard me talking about this or not, but the day I wrote this he started calling me “Mom.”  And the journey continues…

Yes, I’ll get a breather: autism and employment

This past week, the school staff and new case manager asked me,  “Do you see your [15-year old] son living with you indefinitely or do you see him moving out on his own?”

My answer:  “Out, definitely.” (Are you kidding?)

Here’s a quick background: Currently we are working on the high schooler’s IEP. We have also increased his intervention with our local case management unit.  He’s on his way to adulthood, and we are preparing.

Fun times.

I love my boys, but I have got to have a breather.  At the same time, I wonder if I’ll ever truly get one. I wonder if they will be employed and have jobs that they like.  (Read more here.) I wonder if they will support themselves someday, be able to live on their own, with roommates… or, dare I say, spouses.

It just so happened that as we’ve been grappling with these questions,  I’ve also been reading a book called Thicker Than Water: Essays by Adult Siblings of People with Disabilities.  This book is joyfully, and, at times painfully, honest about the adult sibling’s role in care and advocacy.

Like many parents, I am concerned about the possibility of my  neuro-typical daughter being the boys’ main caregiver after my husband and I are gone.  There’s one of her, and two of them. This book inspired me and my husband to seriously start the process of getting a special needs trust going and explore future living arrangements for our sons. We want to provide for our sons and protect our daughter from future frustration and turmoil.

There must be  some divine intervention going on right now in this Givler family household.

All of these questions at once about independent living + reading about care after the parents are gone and sibs are legal guardians+ realizing that my trusty ink pen is from our local Special Needs Planning= God is letting me know it’s time to prepare.

It’s daunting.  It’s scary.  It kept me up a couple of nights.

So today, I happen to receive a link in my email entitled, “They’re assets at work– and they’re autistic.” Upon reading the article, I realized it was Temple Grandin’s presentation that I was privileged to attend last May. This time, however, she was joined by corporate managers who hire people with autism.

Here’s an excerpt of the article:

Workers on the autism spectrum don’t always fit in at first, but with training and a little extra consideration, they can be among the most innovative and detail-oriented employees.

That was the message Thursday from 3M, Cargill and Best Buy managers who took the stage at 3M’s “Autism and Employment” forum, which was organized by the St. Paul-based Autism Society of Minnesota.

I am very hopeful about my sons’ futures.  My sons do and will have a chance to live to their full potential, whatever that may be. Maybe they will indeed be with us “forever”, but maybe they will be independent.  Whatever the case,  I will advocate for them and cheer them on.  I will, as Grandin said in the article, “loosen the reins a little bit.” My boys will flourish.  (And perhaps my husband and I will finally take that honeymoon.)

My electric kettle and my coffee press

These things make my life easier.

I got these items at first because of our “coffee issue.”  My oldest son loves coffee, and has since he was 9 years old (and younger).  When he came to live with us we let him continue drinking coffee… as long as it was decaf!

So now he’s old enough to make his own coffee, and coffee grounds were getting EVERYWHERE.  I’m talking about the floor, counter, crevices in the coffee maker, the coffee maker’s water reservior, the stove.  You get the picture.  There was also the problem of finding old coffee and dried up coffee filters in the basket because dear son didn’t want to clean up after himself.

I tried to come up with ways to make my son clean up.  “Grounding” him from the coffee maker, letting him have coffee only on the weekends, switching to instant coffee… nothing worked.

Finally, I got rid of the coffee pot and switched to an electric kettle and coffee press.  Click here to check ’em out.  (I do get a referral fee should you purchase them after viewing.)

First, the kettle. My kettle boils water very quickly.  The one I got has a blue light that comes on when it’s heating, and an automatic shut-off after the water boils.  It’s also cordless, which makes it very convenient.

I found other uses for the kettle, too.  I cook with cast iron and stoneware.  These are to be cleaned with hot water, no soap.  I boil the water in the kettle, scrape the skillet and / or baker, and use that water to make clean up a breeze!  I also use the hot water to soak other dishes while I load the dishwasher.  Casserole dishes are cleaned much quicker.

Now for my coffee press.  It doesn’t use energy.  It takes up very little room.  The whole thing can go in the dishwasher. It brews in  about the same amount of time as a drip coffee maker.  I just put the grounds in the bottom of the press, pour boiling water from the kettle over the grounds, insert the press / plunger thingie, and wait 5 minutes.  Then I pour the coffee in my cup, put gobs of milk or creamer in, and add sweetener. The coffee is so good.  It tasts richer. There’s no remembering to empty the coffee basket, discard the grounds and filter.  There’s also no coffee grounds ending up in the water reservoir or other crevices that I can’t figure out how they got wedged in there (courtesy of above-mentioned son), no grounds spilled all over the kitchen counter when dealing with the basket (also above-mentioned son), etc.

It’s the little things that lighten my load.  I’m thankful for my kettle and press.

My stepson loves me and he wrote me a song

My stepson and I go back and forth between getting along famously and butting heads like you wouldn’t believe.

In music therapy, Josh wrote a song.  I framed it, and am looking for a place to hang it so that I can point to it when he tells me I’m “evil.” Mwa hahahahaha!

Before you read this, I want to acknowledge that some people have expressed “concern” that he calls me “stepmom” instead of “mom.”  Actually, since he has PDD-NOS / autism spectrum disorder, this is just his being honest.  It’s also a way for him to acknowledge me in a mom role without betraying his bio mom.  So it’s really ok, people!

Here’s my song.

Elizabeth’s Song

You are a loving Stepmom
Because you talk to me

I love you because you are
Loving, caring, kind, loyal, and a good cook.

You are a caring stepmom
because you are respectful and nice

I love you because you are
Loving, caring, kind, loyal, and a good cook.

You are a kind stepmom
because you listen to me

I love you because you are
Loving, caring, kind, loyal, and a good cook.

You are a loyal stepmom
because you are committed to the family

I love you because you are
Loving, caring, kind, loyal, and a good cook.

You are a good cook
Because you make awesome food

I love you because you are
Loving, caring, kind, loyal, and a good cook.

Time out

This is one of those times I’m going to take a break from talking about autism.  This time it’s about my dear daughter.

My daughter was in a grumpy mood this morning.  There was a 2-hour delay for teacher in-service, and she really wanted to stay home all day, I think.  Plus, she wanted me to make her breakfast (a peanut butter and jelly on toast), she wanted to eat her sandwich in front of the tv, and she wanted me to pamper her, all while she laid on the couch under her soft blankie.

I informed her otherwise. She had to make her own sandwich (working on stepping up the self sufficiency), no eating messy sandwiches in front of the tv, and no pampering… not this morning, anyway.

She proceeded to be very angry with me and yell, stomp, tell me that she’s tired of dealing with me, I never do what she wants me to do. (She sounded like a mini version of her 15 year old brother.)  I managed to keep my frustration under control and calmly sent her up to her room for a  time out.

As her time out was coming to an end, I started to go upstairs to her room, where she was hopefully simmering down.  I heard her bedroom door slam shut.  As I approached her door, I had to stifle a laugh. On her door, which we had previously painted with dry erase paint, she had drawn a picture:

Photo by Elizabeth Givler

It’s an angry stick figure with the words “I am not happy” written above.  I refrained from laughing loud and went to my room to laugh quietly by myself.  Then went back to take a picture :-).  Here’s a close up view:

Photo by Elizabeth Givler

I knocked on the door, she let me in, and we talked.   I explained that since she’s 7, she can make her own sandwich.  Sometimes responsibilities mean that we have to give up something we want to do for a little while in order to do what really needs to be done.  She thought about that, and then we hugged.  She changed the picture:

Photo by Elizabeth Givler

She erased the word “not”, and added a pink smiley face.  After all, pink is her favorite color!

I realize this post isn’t about celebrating the differences.  It is about family life.  I do want to point out that I think she got this idea from our feeling chart on the fridge.  We used to use something similar to help the boys understand feelings.  Meg now likes to gauge her own feelings on the feeling chart.  And she let me know in no uncertain terms how she felt by drawing a demo.

I wonder if this could go along with “inclusion.”  Sometimes, or dare I say most of the time, the things we use to help those who have “disabilities” are beneficial for all people.

How are you feeling?

Family un-togetherness

Stock.xchng/Photo by Mei Teng

Recently, my sons joined the Easter Seals of Central PA for weekly  bowling night.  It so happened that their first games were on the night of my daughter’s birthday.  We dropped the boys off at the bowling alley, then took my daughter out for dinner and shopping.

Again, fun was had by all!

It was so great for my husband and I to have “alone time” with my daughter.  Going to to a restaurant was both cheaper and quieter.  Meg had our undivided attention.  She and I got to giggle, ooh, and ahh as she tried on and modeled clothes in the Target dressing room, and I marveled at her early bargain-hunting prowess. She and her Dad got to cuddle in the restaurant booth.  We are looking forward to these bowling nights.

Also, going bowling without the parents will do wonders for my sons’ self-esteems, especially that of my 11-year-old’s.  We are wanting him to have social interactions without the parents hovering present. We also want him to be independent and not “need” us so much.  That means our letting go and letting him, as well as his brother, be free.

When we arrived home later, Philip remarked, “I’m just a boy who loves bowling.”  Meg answered, “And I’m just a girl who loves shopping.”

I am excited to see all of my children mature and become independent, claiming their own identities, learning what they like.  I am hopeful that these coming Wednesday evenings will be a piece of the puzzle (no pun intended) of their becoming independent adults.


Sibling love changes lives

Parent-teacher conferences were last week.

Yeah, I know.

I went to my daughter’s conference first.   Meg’s grades were good, although in the classroom, gym, and art she scored and “n” for “needs improvement” on demonstrating responsible behavior.  She’s like her mom– loves to talk and socialize! Meg is a very good reader (I’m already finding her hiding with books, deeply engrossed), a deep thinker, and a good math student.  Meg notices things that other kids in her reading skills group don’t notice yet.  She is a delight, her teacher said.  Yes!

Yet, that’s not what made me the proud mama.

Meg has struck up a friendship with “Floyd,” who is on the spectrum.  I know he’s on the spectrum  from observing him in the classroom while carrying out my room-parent duties.

Meg and Floyd have things in common. Rather than sit in a group with the other kids, they sit on their own.  Their desks are separate, but near one another.  Meg actually requested to be separated from the other kids– on her own– at the beginning of the school year, because she couldn’t control her talking in a group.  Wow!  My experience with autism tells me that Floyd benefits from having his own desk, too.

Meg and Floyd do “stations” together sometimes, and play together at inside recess. Meg’s teacher said that she looked up to see Meg and Floyd playing with alphabet letters, making them talk to one another.  She commented that Floyd has a friend, and we both got teary.  She went on to say that Meg doesn’t see the behaviors, doesn’t “fight back,” isn’t offended.   I commented that I think it’s because of having two older brothers with autism, and she agreed.

My family life can be hectic and crazy and stressful.  However, through it all,  my daughter is growing into an amazing person.

She doesn’t see the differences, she sees Floyd, her friend.

Floyd has a friend.

That gives me hope.

Sensory bowling?

January 30, 2011 was my son’s 11th birthday.  February 2 was my daughter’s 7th birthday.  January 23rd, a week before my son’s birthday, was my niece’s 16th birthday.

Exciting time  for the family!

The extended family met once again at the bowling alley.  There were two birthday cakes and one plate of rice crispie treats, all with candles.   Fun was had by all!

I was surprised at how relaxed my son was at the bowling alley.  He laid down on the wooden floor by the ball return.  I kept telling asking him to sit in one of the chairs, but he kept returning to the floor.

I finally gave up.

My sister- in-law remarked that Philip was very relaxed.  She then said that Philip was probably getting a good massage there on the floor.  The vibrations from the balls, pins, footsteps, jumping up and down and screaming, etc. probably felt really good on his back.

Way to go, sister in law!  Way to observe!  Good advocating!

Bowling is such a great way for our family to get together and relax.  Recently one of my nephews and one of my nieces were diagnosed with Asperger’s.  Bowling gives all the kids, on and off the spectrum, a chance to play, focus on a repetitive action, and relax knowing exactly what is expected of them. Oh, and get a free massage on the floor.