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Learning to Compromise

This post falls under the category of
“I-don’t-know-what-I-was-thinking-by-suggesting-a-change.”
This also falls under the category of
“You might be an autism parent if…”
Many kids with spectrum disorders are very bothered by change - whether it’s a change of the position of something, or a change in routine, or a change in driving directions. So when I suggested a change, I’m sure I knew, in the back of my mind, that this was a *bad* idea. Yet, I proceeded to suggest a change. Why? I don’t know.
I suggested we decorate the tree differently this year. We often use a lot of ornaments from years past, and we love the sentimental look of the tree. This year, I suggested a different arrangement of colors, thinking it might be fun to try something new. That led to 2 straight days of a child who was constantly on-edge. When things got tough for him during the course of the day, he was immediately threatening to pack up and move out, or stay in bed for the rest of his life.
Picasso made a plan for setting up the tree on Tuesday night and could hardly wait to decorate today. However, when I tried one more time, to suggest a different decoration plan, he immediately resorted to anger & frustration. {Seriously, Becky, didn’t you learn your lesson yet?!} After all the meltdowns, I was very willing to concede and stick with the usual decorating method, which I do love, realizing that he probably just didn’t have it within himself to be able to deal with change right now. (And I was kicking myself for even thinking that it was wise to suggest something different.)
Tim followed Picasso upstairs as he had his meltdown this morning. They were upstairs talking for quite awhile - ok, Tim was talking, Picasso was…yelling, shouting, screaming…not talking. (Oh, these meltdowns do take their toll…!) A little while later, I heard Tim asking, “What did she say about your idea?” Picasso replied that he hadn’t told me yet.
They made a plan - another plan. A compromise of sorts.
Terms:
*November-Christmas: use Mom’s new idea for decoration, incorporating a few of the traditional ornaments in the new decorating scheme.
(This seemed fair.)

*January: take all decorations off tree and re-decorate for the month of January, using all the traditional ornaments.
Wow. When he told me his plan, I sat listening to him and I looked at the tree, looked at him and really didn’t think that having our artificial tree up for 2 months was worth this hassle. I was very much ready to give in and just go with the usual decor.
Then, another thought: Ideally, I want him to be able to compromise. I want him to be able to give and take. I want him to be okay with someone else’s suggestions.
Therefore, I agreed to his terms of compromise. Yes, really. We now have a tree decorated in a different style than we usually decorate. And after Christmas, we will take off all the decorations and put the traditional ones on for the month of January. He has a plan, it doesn’t interfere with anyone’s life, it incorporates flexibility into his life, and it lets us try something new.
And secretly, I’m hoping that maybe, just maybe, come January, he will be ready to take down the decorations and put the Christmas things away. But if not, we’ll be decorating for a second month and providing positive reinforcement for his ability to compromise and be flexible. 

(Photo Source: Pinterest)
(Photo Source: Pinterest)
(Photo Source: Pinterest)

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‘Twas Two Nights Before Thanksgiving….

Tuesday night.
2 nights before Thanksgiving.
Many thoughts on thankfulness
and things for which we’re grateful.
I love this time of the year!
I love that everyone takes a moment to pause
and reflect on the notion of giving thanks.
We truly are so blessed!
Source: Pinterest
Count your blessings…there are many.
At this time of the year,
it’s so easy to just look around and see the many things
for which we give thanks.
And then, there’s Picasso.
That child is so much like me, in so many ways.
Including his love for Christmas,
long before Thanksgiving.
At least I know he comes by it honestly.
I mean, I can’t help myself…
I have so many Christmas cd’s
that it takes more than one month to listen to them all!
And so, here we are, 2 nights before Thanksgiving.
My favorite holiday.
And we’re preparing for the holiday.
The *next* holiday.
Tonight, because he cannot wait ANY longer,
we will be putting up our tree.
Artificial this year, as that’s the only possible way to
put our tree up…already.
So we wish you all a very happy Thanksgiving!
Enjoy the time to reflect and give thanks.
Us?
We’re thankful that our son,
who struggles with ability to make a plan,
has made a plan to put up the tree.
And so we’re honoring that plan, and that big step for him!
He has looked around to see what needs done.
He has put things away,
he has made a plan to rearrange furniture,
and he has vacummed.
We’re so thankful
for 3 healthy kids who are full of life!
We’re thankful for family and friends we love dearly.
We have much for which to be thankful!
Source: Pinterest
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You Are Not Alone / #YouMightBeAnAutismParentIf

Yesterday, Sunday, was a particularly tough day for a lot of reasons, many of which revolved around Picasso, our son with special needs. Feeling rather bummed about the whole day, I plopped down on the couch and mindlessly checked email, Facebook, and Twitter, since I hadn’t done that for awhile.

When I opened Twitter, I saw that Jenny had used the hashtag #youmightbeanautismparentif and I started to read tweets in that thread. First it seemed to be starting as sort of a joke - funny, quirky things we have to deal with as parents of kids on the autism spectrum.

But then it started: the realization, for me, that these people understood what we are dealing with, in our son’s life. The same things that are really hard for us, are really hard for them. And the things that make us laugh, make others laugh. And the things that hurt, affect others in the same way. What I found was a larger community. People had thoughts and feelings very similar to mine. There’s something cathartic about laughing and even crying with people who understand your emotions.

Some of my favorites from the #youmightbeanautismparentif thread include:



*your first instinct in a new environment is to locate all of the breakables and exits (@BobbiSheahan)
*you are happy when your child gets in age appropriate trouble (@RaisingASDKids)
*You still bear scars from your child’s last 3 meltdowns. (@thepyxie)
*you know what day of the week it is by the professional you have an appointment with (@MurasakiMoon)
*You go toe-to-toe with ANYONE over your kid’s Education, Therapy & Medical Needs. We’re not here to make friends (@theblondeview)
*the therapy office is like your second home (@sugrNspiceLife)
*your child quotes movies in the same accent/pitch as the movie (@manyhatsmommyMI)
*you trip over a toy at night and pause to “fix” the now-out-of-place toy so it’s back in line. (me)
As I read through these tweets, it was a great assurance to me that we’re not in this alone. Not a one of us. There was an expressed gratitude over the fact that, “Oh, I’m not the only one!” We are each other’s cheering section. When one is down, the masses rally. When one hurts over a situation at school, the others are there to support and empathize. When one hears “I love you” from their child for the first time, there’s not a dry eye in the house and the congratulations flow freely!
You (or I!) may be the only special needs family in a particular neighborhood or town, but you don’t have to go any farther than your computer to find that you are not alone!
After all,
#youmightbeanautismparentif you stayed up a little too late to follow this thread and could now use more coffee!
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Consequences

We’re having a resurgence in Picasso’s behaviors. I’m frustrated.

We went to the library last Thursday to fill our LARGE bag with books for everyone to enjoy. As we were in a bit of a hurry, everyone chose only 5-7 books. (Usually, everyone gets to choose closer to 15…and they read them all!)

Today has been a good day - and this one incident doesn’t change that; it just really, really frustrates me. I was cleaning up a bit and our Princess told me she found a ripped page from a book on the floor. When she looked at the picture, it was a page from a Judy Moody book.

The only Judy Moody book that anyone has read recently has come from the library. Quietly, I hoped (hoped!!) that the binding had a little break and the page had just slipped out.

No such luck.

This page was ripped from the book - not a single page around it is loose, and about 1/4 of the top (including some words on the page) is missing. The book cannot be “fixed” as so many of the words on that page are missing. Now, if you know me (and for those of you who don’t), this kid is rarely out of my sight. Occasionally he plays upstairs but is closesly monitored. If he’s down here, the longest I’m ever not in the room with him is about 3 minutes while I put laundry away. That’s how we roll around here. Unfortunately. We’ll get there someday, I’m sure. Just not today.

Here comes the tough part - no visible remorse. In fact what is being expressed is an “I don’t care” attitude, followed by an emptying of the piggy bank because I told him he’ll likely have to pay to replace the book. The only visible expression of concern is when I told him that HE will have to be the one to talk to the librarian and explain what happened. Momentary look of panic. Then more of the “I don’t care” attitude.

He’s emptied his money bank, he’s bringing me additional coins as he comes across them while cleaning his side of the room. I’m trying to find a way to make this mean something to him, but I’m not succeeding. I don’t know when the rip happened, but we were having a turn-around day from the past couple days of poor behaviors.

I can only imagine that he must feel really out of sorts right now (these days) because he’s working hard to control so many minute deals of his life.

What a great opportunity to teach natural emotions (like anger at finding a page ripped out of a library book). Unfortunately, I think this push to work on so much in the emotional realm of his life, is what’s at the core of his struggles right now.

I’m hoping for a kind librarian when we return the book….



Update:

We went to the library to take care of the damaged book this afternoon. Thankfully, we got a very kind and understanding librarian! I handed the book to Picasso and he opened it and said, “Ripped a page out.” (Note: Didn’t want to take ownership by saying “I ripped a book out, but at least he didn’t go running off or throw a tantrum.)

The librarian looked at the damage, realized it was not fixable and explained that to Picasso. He asked how much it would cost. $15.99 + a $6.00 charge for something (I can’t remember what that was.) I said that he had close to $15 with him, but not $20, but we’d pay what he had and owe her the rest. She knocked off the $6 fee. Very kind!

He stood at the desk and counted out his dollar bills and his quarters and got to $16. He was quite impressed that he’d be getting a penny back, but realized it wasn’t really a “gain” when he had to hand over a whole desk full of coins and dollars. I reminded him that when we break something, we have to make it right and that if he would happen to rip another book, he’d have to pay for it as well. He replied with, “I know,” in a rather dejected tone.

The librarian said that these things happen, but we need to be careful - she was so good to explain things kindly to him!

When we were back in the van, I reminded him that the librarian was just very kind to him. I suggested that the next time he has an opportunity to be kind to someone, he should be kind, remembering that the librarian had been kind to him.

His reply?

“I won’t be forgetting this day!”

And through some tears I said, “I won’t either.”

So glad that this worked out well for him - he paid for the damage he caused, but was treated with kindness. A good model to use as we move forward in life!

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The Hardest Question

It’s the dreaded question.
No, not the birds and the bees.
Bigger than the birds and the bees.


And although they’ve asked before, and I know they’ll ask again,
it’s a question that, really, I only get one chance at, and I must get it right.
Their strength after this question is based on how well I answer
this. one. question.

“Mom, what happens to us if you die?”

I dread this question - not because I’m afraid of death, but because I know they’re thinking about it.
They’re little - death shouldn’t concern them.
Yet, death is a reality and we must face it and consider it.
(And no, there are no health issues that we’re dealing with - just the natural curiosity of children.)


The barrage of questions:
What about homeschooling - who will teach us?
Will we have to go to a school?

Will we remember you?
Will you die when you’re 37? (next year)
Why do we have to die?
Can’t you stay forever?
How will Daddy manage? (I try not to chuckle too hard at this one - he’s a great dad!)
Will you still love us?


My sweet babies…I will always love you!



Some good does come from these questions.
I get to explain that there is no fear in death - we have the assurance of heaven because of faith in Jesus.
I get to tell them that these are real questions - tough questions - and we cannot always have all the answers, but as their parents, we will do the very best we can to make sure that they will continue to be loved in abundance!
These questions remind me to continually consider the best and most appropriate care for our kids - not to dwell on it, but to realize it is a reality that we need to consider.
I am also reminded to update all school information for Tim, so that he is as up-to-date as possible, which is always beneficial.
And I’m reminded to pray - for good health, for safety, for plenty of people that love them, and for many more happy years!


Then I trust and hope that my answers are sufficient - that I have given them enough information to provide security for them without causing them to worry more about this topic.

And I pray for peace in their hearts.
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Technique for Managing the Meltdowns

Good days are a blessing.
So-so days are manageable.
Tough days…well, ’nuff said, right?
I enjoy, and am encouraged and strengthened by people’s support and encouragement. I think we all enjoy when someone looks in on our lives and sees the good we’re doing! It validates our attempts at our work and gives our confidence a boost as we work to reach our goals.
As a mom, though, that encouragement is not always there as often as it might be if I worked at an outside job. Don’t get me wrong - the encouragement flows freely, but the pat on the back for a job well done is not always as immediate as I’d sometimes like for it to be.
Especially on a tough day. As a mom, when you’re in the trenches, it’s hard to call for emergency back-up because by the time you’d get the back-up, the barrage of the war will probably be over. So what happens when you realize the war is raging around you, in the form of a 7-year old’s meltdown due to sensory overload, inexplicable frustration, things not going according to his plan?
Well, I’ve started giving myself pep talks.
I know it sounds silly, but when it’s Me vs. The War, I call on everything in my arsenal.
(Ok, I’m going to move past the “war talk” now, as this is not really a battle, but more of a walk along the Path of Meltdown in an attempt to keep him safe.)
When he’s overwhelmed and out of control, there’s not much I can do. What we’re working on with the therapists is to let him be - to make sure he’s safe and won’t hurt himself or somoene else, and let him work through these things on his own. But when things go downhill and he can’t really stop himself and is way out of control, we have to take a different approach. And I’ll tell you, it’s not fun to stand toe-to-toe with someone who can hurt you, thanks to the therapies he goes to, if he lands a punch or a kick. It’s not easy to maintain the necessary boundaries as his issues escalate.
Enter, the voice in my head. I begin to recite my checklist:
*humor - tried, didn’t work - he’s too far past that.
*soft, soothing voice - I can hardly hear myself, pretty sure he doesn’t hear me either.
*eye contact - negative. His eyes are shut tight.
And I begin my mental pep talk. “You are a good mom, and this is the right thing to be doing - the therapists have said so. You’ve tried the first things first - he’s now safe, despite the meltdown continuing.”
(But, oh, my ears! The screaming…!)
“Are you listening to me? You’re doing your best and that’s what he needs. Shoulders down, chin up. Chin UP! Pray! You’re made of tough stuff and this is hard, but you’re not a quitter. You’re here to protect him and help him along his journey. You have a great team behind you who is going to be so excited to hear that this will end well! Don’t be discouraged - remember how tough it was when you had very few tools and tricks to use to manage these? You’re past that! You are full of knowledge, patience, understanding, and that is exactly what he needs!”
(Will it ever end? I have other kids that need me!)
“Remember when these were HOURS long? What are you complaining about? You’ve been here 20 minutes. This parenting stuff is not for the weak - and you are not weak! You are the one best-equipped to handle this child. Hey - are you listening to me?”
Kids need me,
phone rings,
food on stove is finished cooking,
dogs bark at squirrel on fence post.
I run downstairs,
put dogs in crate & close curtain,
move food & turn off burner,
ignore phone and turn it off,
explain to kids that I will help them as soon as I can.


Back upstairs to child in need and explain that lunch is ready, the other two need my help as well and I need to be able to help them.
He insists he’s not coming downstairs.
That’s fine as he’s starting to settle down anyway.
Pep talk continues: “You did it! You did the things that needed to be done. So you’re 30 minutes behind - not a big deal! You got lucky with this one - nothing broke, no one got hurt, no Sharpies involved, and you can be pretty sure that he’ll come downstairs when you tell him his food is ready. After all, he is a growing boy!”
(Yes, true, good perspective!)

Remember: “This little guy depends on you to walk him through this and to be with him. He has such a hard time trusting everyone else, and trusting himself with everyone else. You must keep being strong, for him! Good work, Mom!”

And, just like I thought, the call for food snaps him out of the remainder of his meltdown.
After all, he is a growing boy!
Source: Uploaded by User, via Becky at Pinterest



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Making New Friends

This morning, Picasso had another tough start at church. I was frustrated and hoping to avert any possible meltdown. As I tried to figure out what his plan was, I was still able to get to him with some humor, which means he wasn’t *completely* overwhelmed…yet. After some discussion, we agreed that he could go and draw. Shocker…Picasso…drawing.I set him up in the church office where I could see him, and then left the room and joined others in the cafe’. I wasn’t too far yet he never once looked for me. He was so engrossed in his drawing.

I was talking with a friend about his drawing and she was commenting that she enjoys drawing sometimes as well. I did not know this before - it’s now filed away in a good spot! When I went in to gather Picasso & his papers for church, I suggested he take his drawings and show A, as she likes drawing, too. So he approached her, looking closely at her, as if to assess if she was a contact with whom he’d be safe. (Still) unsure of how to start, he paused, thought and said hi. Then, she was his audience, whether she wanted to be or not. (Thankfully, she was very willing to listen.)

He proceeded to tell her about 5 or 6 pages of drawings and what they were - kind of rapid fire, one right after the other. She was awesome! She listened carefully, and after he was done, she asked her questions. He answered her and talked a little more about his pictures. They had a small discussion and she told him of her enjoyment of drawing as well. She suggested maybe they could draw together sometime. Talk about eyes lighting up - it was as though she said she’d be his best friend forever! So I said next week we’d bring a notebook for him and one for her and maybe they could do a little drawing together. He thought that would be a good idea by commenting, “Ok.” (Hey, at least he commented!) ;-)

He picked up his papers and walked away - and I reigned him in for a minute. I suggested that since she had been his captive audience, he should let her know he was done for now, by thanking her for looking at his pictures, or by at least saying good-bye. He complied - with eye contact - and without any hesitancy.

I love when these things just unfold so naturally!

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A Silver Lining

I always find that I get a little frustrated when I have a lot of appointments to schedule or get to. It’s not anyone’s fault, it’s just that I’m thinking about all the things that need to be done at home - laundry, cleaning, schoolwork, etc. There’s not a whole lot I can do about these things - we need to get to the appointments. But still, the never-ending to-do list looms in the back of my mind.

I was thinking about this on Saturday while we took the kids into town for the rescheduled trick-or-treating. I was mentally making a to-do list for when we got home. I guess it’s part of motherhood. But I did have fun while with the kids and meeting people in town. We met a lot of shop-owners, saw a lot of new people, and just generally had a good time. Some shops had jars to guess the number of candy corn or M&M’s, so we dutifully guessed and filled out the slips. I was grateful to have Tim along to keep an eye on the kids while I filled out name, address, phone number, email, etc., for each kid’s guess.

But then, we won one of the contests! Two shops had partnered up to give TWO gift cards - one to each of their shops. The lady at one of the shops awarding a gift card had suggested we stop at the other shop (which was not on the main street, but rather down and around the corner). We didn’t even know about the other shop, so we didn’t have any intention of even heading down there. But, Mozart guessed closest to the correct number of M&M’s, and so now we have gift cards to two of the shops in town - one to a kids’ boutique, and one to a spa!

I think I’ll probably get something for the kids at the boutique, making sure Mozart gets something special out of the deal for being “the winning guesser”. And I’ll probably treat myself to something at the spa, despite Picasso asking me if he could be the beneficiary of the spa gift, because he would “love a massage.” Too funny!

What a really nice gift at this time of the year!

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Extra Hour of What? Sleep?

Setting the clocks back at this time of year used to be one of my favorite things to look forward to. Now, when I think about it, though, it’s with great doom. I’m hearing from a lot of moms that their kids didn’t get the memo on an extra hour of sleep either. Everyone’s been a little off today, and somewhat cranky (grown-ups included).

My oldest and youngest will internalize the time change relatively quickly and I’m glad for that. This should all be out of their systems by the middle of the week, at the latest. They’re pretty flexible and able to roll with the changes in time.

Our middle guy, though, will still be struggling with the effects of the time change in 2 weeks. Guarantee it. It’s one of those things that I know, because I know my child. And I’m hearing of the same struggles from other moms as well. Our son takes longer to transition to anything - and that’s not bad. But for these next few weeks, he’ll fall asleep at a different time because his body still registers the old time. He’ll wake up earlier, he’ll skip his afternoon rest, and this is coming on the heels of his therapy intensive in October. Thankfully he’s already rebounding from that with much more ease than after the last intensive.

But he will be “off” as it relates to the new time, for some time to come still. And I know you’re thinking, “Hey, it’s just an hour.” You’re right about that - it IS just an hour. But this is a kid who “sleeps in” until 6am. So when his body is ready to wake up at 6am tomorrow, it will actually be 5am. I don’t have a clue what time he woke up this morning - I’m glad he’s learned to come down and turn on cartoons. But I’m still terrified that he’ll decide to take a morning walk, especially as a lot of his speech, of late, has been about going out into the neighborhood on his own.

And so we will serve up a little more of those things that help us get our mornings started. For me, the wonderful coffee that Tim makes. For Picasso, a large serving of orange juice. Good luck with the time change, everyone!

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Thankfulness, Part 2: Life in a Small Town

I was fully intending to try and keep up with this series a little better, but….you know how life can go sometimes. Today, though, I wanted to take a few minutes to capture the fun of this day.

We live in a small town - in fact, a town that was voted one of the top classic towns in Pennsylvania, last year. Our town has a quaint feel to it. As you stroll through the business district, there are many mom & pop shops. There are people who know everybody, and people you can talk to just because that’s what you do in a small town. There’s an old theater that still shows movies, the local train has a stop at the south end of town, there are coffee shops, cozy restaurants, gift stores, and spas. This is certainly a place that people come to unwind after a busy week.

We have an organization that heads up activities in the business district. We’ve gone to the Christmas parade in years past (when it hasn’t been too cold!), and we’ve watched as Santa arrived by train. Today we participated in a trick-or-treating event through the town.

Honestly, I have no interest in Halloween - I just love and prefer Thanksgiving and Christmas. I don’t relish the thought of trying to take 3 kids trick-or-treating on my own, especially when one is prone to meltdowns and/or running away from us. So when I read about the opportunity to go into town for this activity, I jumped on it. We really want our kids to know our town, to be known in town, and to feel safe in town. One of the things we’ve already done is take our younger son to the police station to inform them of his issues. If ever he were to run away, I’m positive that he would head toward town, and so we wanted them to know all about him as he requires careful attention.

A few days ago, I emailed the “request info” form on the town event page to ask about details for today’s outing, to know best how to help prepare our son. Gene, from the flower shop, called me back within an hour or two, and I explained about our son’s needs and why I was interested in knowing as much as possible, ahead of time. He took about 10 minutes to talk to me and give me an overview of how things would work for the day. He encouraged us to stop by and make a floral arrangement and get some candy from his shop.

So this morning, after a little Christmas shopping, we set off an our Trick-or-Treat adventure. (Should have planned ahead to have Thanksgiving dinner & a New Year’s Eve party, and then I’d be set for the rest of the year!) ;-) The trick-or-treating was originally scheduled for last weekend, but we had some pre-Halloween snow, so it was rescheduled to today. Each shop that was participating had a sign in the window so we’d know to stop in for some loot. The flower shop was one of our early stops. We asked about making a floral arrangement and got to officially meet Gene. He was great with the kids - gave them each a basket, some foam and helped them gather some ferns & flowers to make their own little arrangements. He talked with them and explained some of the “how-to” of making their arrangement. hen the kids were done, he asked if we were just getting started on our venture through town, which we were. He offered to keep the arrangements until we’d gone through town to gather all our candy.

(Not sure why the pictures are so pink/purple.)

As we passed through town, in and out of stores, it became very apparent to us that our son, with all his issues, quirks and needs, was so very normal! Behind the flight suit, the sunglasses and the hat to keep his head warm, his quirks took a back seat. He was just like the other kids we passed - dressed up, carrying a bucket for his loot, looking for the trick-or-treat signs on windows. He would say “hello” when he walked into a shop, and he’d say “thank you” when we left. Occasionally he’d say “trick or treat”. Because Tim & I were both able to go with him, he could hang back and finish a craft in one store while we went to pick up our flowers. (I don’t know that any other kids got to make flower arrangements today…didn’t see any other kiddos carrying flowers around town. A special treat!)

A big thank you to our friends who gave this costume to us.
Our guy couldn’t find the costume he wanted to wear, but he was thrilled when we remembered we had this one!

Because of this outing, we were able to be in town, practice safety rules for crossing the street, meet a few police and firemen in a non-threatening way, and widen the circle of people he feels safe to greet. I believe the next activity we’re attending is the Christmas parade in early December. It’s a pretty decent parade with old cars, some muscle cars, bands, floats for different sporting activities, and Santa at the end of the main parade. Following the parade, you can wait for the mailman who is officially the end of the parade. He collects the letters for Santa and the kids flock to the mail truck!

I love living in a small town!

The arrangements they made at the flower shop in town.

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