In So Many Words

No matter how much we love the season or cherish the celebration, all special events
come packaged with additional stress. Whether it’s finding the perfect gift, baking
signature desserts, or entertaining, we all understand the extra demands of creating
memorable occasions.

Now magnify that stress to an unimaginable degree and you will begin to understand how
special events impact our children with autism. We know that children on the spectrum
do not like changes – even those that may delight – as do neurotypical kids. Their core
deficits compromise their ability to anticipate or tolerate change very well…if at all. They
prefer structure, predictability, schedules. Yet holidays, birthdays, and special events
mean:

• Change in social contacts
• Change in daily routine
• Change in expectations
• Change in sensory experiences

For children with autism, all that change pushes anxiety beyond being bearable. Some
routine changes fly under the radar, such as rearranging the house to accommodate
decorations or cooking seasonal dishes. Other plans, like parties and travel that involves
hotels or homes with new beds, new people, new smells, new sounds, clearly signal huge
stress-inducing changes. Whether the change is big or small, children with autism must
be prepared so they have every opportunity to experience the joy and fun these situations
offer. Try these tips:

Define social expectations: Let your child know how many people and who will be
there. Be specific about social pleasantries – keep them simple and be clear about what’s
expected of the child not just at the onset (shake hands and say “hi”), but also as the event
unfolds. Plan what your child should say if he does not want to talk or dislikes food being
served.

Designate a safe place and relaxing activity: Plan ahead for a place where she can go to
retreat and relax. Be sure to bring along a favorite activity she can play alone and calming
devices such as sensory toys or music.

Create a secret code. Pick a simple gesture or even a code-word that he can use as a
signal if he begins to feel angry, anxious or overwhelmed. That’s your cue to step in and
help when he’s unable to verbally express the need.

Prepare an event book. Make a book with pictures that show the place you’re going,
where you’ll stay, and activities you’ll pursue while there. If you’re staying at home, the same concept can be used to prepare your child for visitors (photos of relatives), changes
in routine, and decorations (include a photo of last year’s Christmas tree). Include extra
blank pages for photos of this year’s activities. Involve your child in taking pictures this
year, as much as his ability and interest dictates.

Maintain the routine. As much as possible, maintain her normal daily routine. Create
a schedule showing not just which parts will change, but the regular routines that will
remain the same. Knowing some things won’t change can be very important to your
child.

Include friends and family. Make sure everyone knows about your child’s socialization,
sensory, communication and dietary challenges. Ask them to honor your child’s request
to stop talking, not to hug, or her need to be alone. Step in and kindly but firmly handle
the relative who insists that “an itty bitty little huggie isn’t going to hurt him.”

It’s up to parents and family to give our kids with autism the tools they need to succeed.
Helping them anticipate changes and cope with new expectations goes a long way toward
reducing anxiety and building memories of joy and love.

This article is taken with permission from www.autismdigest.com, where readers can go
online and, by signing in, can access free copies of the magazine’s eGuide, which is packed full
of more information on holidays and gift giving for children on the spectrum. Article amended to fit the present season of Valentine’s Day.

Just in case you missed it or didn’t get a chance to enter yet, here’s a reminder about my Hallmark Recordable Storybook giveaway. All entries must be received by Midnight EST on Tuesday, December 7th.

I also wanted to let you know about a great deal Hallmark is offering on their personalized holiday greetings. Here’s the offer:

Between now and Dec. 31, enter the code Blogger25 at checkout to receive 25% off of your order of personalized holiday greetings on hallmark.com! Hallmark.com’s personalized holiday greetings collection includes customizable holiday cards, party invitations, plates and thank you cards – all photo-ready and featuring contemporary new designs. And perhaps the best part? No need to visit the post office to send out anything. Just visit Hallmark.com, pick your favorite design, customize it with a favorite photo and a personal message. Hallmark will do the rest! From printing the addresses and adding postage to mailing the cards on any date you choose, Hallmark’s got it all under control.

To enter the giveaway, visit the original review post. I am closing comments on this post so no one tries to enter here and misses out.

Pictures of decorating the tree seems to be the theme for today (and a lovely theme it is!), so I’ll share ours as well. I am just so happy that it is done! It didn’t seem to take as long this year, possibly because Michael is so much more helpful now.

Michael helping to decorate the tree

The finished tree before we pushed it into the corner and moved the furniture back around it

Wallace resting on the soft tree skirt

Willow trying to attack whatever she thinks is underneath the tree skirt!

Okay, how scary is this? SimpleMom.net is doing a series on 12 Weeks to a Peaceful Christmas, and, not only has it already started, but today’s post was on Week 11!

Does it count that I already have 34 Christmas cards ready since I didn’t get them all sent out last year??

Woke up this morning with a sore throat and was totally exhausted all day.  I’m hoping it is just a matter of having overdone it the last couple of days and not a relapse of my illness.  I just took some Nyquil because I have a headache and am a bit congested.  Tomorrow morning we head down to Virginia to celebrate Christmas with Bob’s family.

Bob had to work today and he asked me to bring Michael over to meet him for lunch.  We took over the turtle pretzels I had made and Michael wore his Santa hat and handed them out to Bob’s team members.  Everyone thought he was so cute, and many of them remembered the pretzels from last year and were very happy to get them!  Then we went over to the mall and looked at the ornaments at the Hallmark store.  Bob got a couple of them, but Michael decided to buy a new Webkinz with his money instead.  Michael is really starting to learn about saving his money for what he wants, and the new interest in Webkinz is so great for helping with that.

Unfortunately, getting to the office was horrendous.  Michael started arguing about everything when it was time to leave and took off down the street when we went to the car.  I had to pick him up and put him in the car.  Then he screamed at me for a couple of minutes.  I told him I wasn’t speaking to him for 15 minutes because of his yelling and arguing.  By the time we got there, he was all ready to go and happily cooperated with Bob.  Then the second we walked out the door to get in the car and drive around to meet Bob (who was getting his lunch out of his car in the back parking lot), Michael refused to get in and wanted to walk around back. 

I think part of it is transition difficulties and the other part is wanting to be in control of what is happening.  This morning was also very unstructured because I wasn’t feeling well, and I’m sure that contributed.  It is just so frustrating and I get so angry at him sometimes.  I almost feel like I set myself up by relaxing and enjoying time with him b/c I it makes it so much harder when he does fall apart.  I’m not sure what the answer is, but I certainly am spending a lot of time praying for peace and for the ability to handle it without blowing up.

This poem was sent out via AutismLink and was written by Cindy Waeltermann, who is the founder of that organization. It is reprinted here with her permission.

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Merry Christmas Eve, Everyone! I hope that each of you will be blessed with joy during this holiday season.

Thank you to everyone who left get well wishes on my last post about having contracted scarlet fever. After a few days of resting and antibiotics, I am on my way to feeling better. I was even able to log a couple of hours of work from home today, although getting myself up and into the office was beyond what I could do!

I finally got the pictures from our ASA Christmas party downloaded and wanted to share a few. Our local chapter (Greater Harrisburg Area Autism Society of America) does several large family events throughout the year, and this is one of the best. Santa brings a gift for each child (including siblings), and it is always a fun time of catching up with other families and enjoying the holiday season.

Here’s Michael with the Head Elf:

Smiling big for Santa and Mrs. Claus:

Opening his Speed Racer Legos that he “didn’t know he wanted” – i.e. they weren’t on his Christmas list but he loved them:

And trying out karaoke for the first time with a rousing rendition of Jingle Bells:

Obviously not everyone who attends a big event like this enjoys being around lots of people with its activity and noise, but the volunteers and board members work hard to find a way for everyone to participate and enjoy the afternoon, and no one has to worry about other people judging their child’s ways of expressing either happiness or displeasure. We have all learned to expect the unexpected, and sometimes the unexpected is that everyone has a great time!

Often when I am asked this question by coworkers on Mondays, I don’t really have a good answer. The weekend often seems to be a blur of random activities or just completely uneventful. This weekend however, I had lots of plans for fun times with Michael and accomplishing many of the Christmas-related tasks still pending. (Bob was away at his sister’s house for an adventure, which I will share more about later.)

Unfortunately, my well-laid plans were not to be. We did have fun on Friday afternoon going to see the movie Bolt (which Michael loved!) and also a brief visit with Santa when he came through our neighborhood with the fire trucks Saturday morning, but by Saturday afternoon, this was the scene:

I’ve just read an entire issue of Good Housekeeping in one sitting. It took about an hour.

Why did I do this, you ask? How did I find the time? And, more importantly, why wouldn’t I spend a free hour finishing up my holiday to-do list or catching up on my blog reading?

The answer is that I am sitting in the waiting room for the walk-in clinic at my doctor’s office. After finally getting over a cold that started the day after Thanksgiving in time to attend the ASA Christmas party last weekend (which I shared about over at 5 Minutes for Special Needs on Friday), I woke up Monday morning with a sore throat. By Wednesday, it had turned into congestion and by Friday, coughing, but then I noticed a rash on my stomach and chest.

So this morning when I woke up and realized the rash had spread to my neck and face, I thought I had best get myself on in to the doctor’s office. And after only 1 hour and 45 minutes, my turn to see the doc has arrived. Wish me luck!

You can probably guess that the outcome was not good. I have scarlet fever. Yes, you can still get that. No, it’s not only for children. Apparently, it is a strep throat, but a viral version with a rash (a very, uncomfortable, itchy rash). I am now on antibiotics and sending up prayers that no one else around me gets sick.

One of my very good friends took Michael to her house while I went to the doctor and then decided to keep him overnight so I could rest. I spend last night and most of today laying in bed or on the couch resting and am so incredibly thankful for her kindness to me.

Although I do feel better than yesterday, I find I get tired very quickly when I get up and try to start doing things. (Thus, the lack of a picture at the top of this post. My neighbor took a great one of Michael with Santa and printed it out for me, but the thought of going downstairs to get it, turning on the other computer and scanning it is just too much for me right now! I’ll try to post it later in the week.)

So, how was your weekend?

I was looking at our recent pictures and realized we haven’t downloaded the ones from Thanksgiving yet, but here’s one from before the holiday—and before his last haircut!

So another week is almost over. Michael and I were productive this morning – we played several games with the TSS to practice winning and losing, and we moved stuff out to the back porch to make room for the Christmas tree.

Being that it’s Friday, I wanted to share a few fun links (including a couple more great giveaways):

At 5 Minutes for Mom, you can enter to win a $500.00 Gift Card to Home Depot (open through December 12th) and a $100.00 Visa Gift Card plus Scott products (open through December 19th).

The December edition of Root & Sprout is out and the Special Content page this month is featuring special holiday traditions. My favorite article so far is Dreaming of a PEACEful Holiday in the Buds section. There are also some great giveaways, as there are every month, and you have until December 8th to enter for them.

I am also over at 5 Minutes for Special Needs today sharing about a fun holiday tradition we have started at our house. Please stop by and leave a comment with your favorite family tradition for the holiday season.

The holiday season, while a wonderful time of friends and family, parties and presents, can also present many challenges for a child with special needs.

For that reason, Try This Tuesday is going to have a holiday theme for December, and we are asking readers to post their creative ideas for handling any of the special situations that crop up at this time of year. For more info, please visit this week’s post, Gearing Up for the Holidays.