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Resting

We’re using this week as a week of R&R. After a year of more appointments than *ever* before, I’m realizing just how necessary this week is, for all of us.

Everyone’s schedules are full - not overly full, but there’s always plenty to do, and somewhere to go. The kids are getting to the age where schoolwork requires more effort, activities take some time, and then there are the weekly therapies for Picasso, which take time plus drive time.

It’s funny how hard it is to actually *choose* to rest when life is so full of schedules and places we have to go, and things we have to do.

This week we have some super-easy (but healthy!) meals planned. We’ve pulled out puzzles, coloring books, reading books, toys, and have planned a few fun outings. Our schedule is what it is, for a lot of reasons. Since we can’t do much to changing the schedule, we need to work on teaching the necessity of rest.

Obviously, we can’t take a week each month to rest, but we’re glad for that this month! Instead, we can focus on taking some time each day to sit back and relax, to give our brains and our bodies some down time. And so far, we’re having a great time!

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Holiday break

Well, I didn’t get posts scheduled for this week…too much family fun! I hope you’ve all had a wonderful Christmas, or Hanukkah if you celebrate that. This is a great time of year for celebrations & festivities!

I’ll try to post a few updates this week, but I’m planning to enjoy some extra time with my family, without all the usual schedule madness. (However, I do miss the routine….)

If you’re shopping today, I hope you find some great bargains. If you’re traveling, best wishes for safety. If you’re with family, I wish you a lot of good memories and peace!

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Christmas Break

Dear Friends,

Tim & I would like to wish you all a very merry Christmas! We trust that your time with your families and friends will be full of blessings, joy and peace!

I wanted to let you know that I’ll be taking a bit of a break between Christmas and the New Year. It’s a nice time to unwind and reflect after the Thanksgiving to Christmas season.

I’m hoping to schedule a post for each day next week, so do stop by. With any luck, I’ll have a few new posts for you, mixed in with a few favorites from this year. It’s been fun looking back to see where we’ve come from, since April.

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Just For Fun…

This post is just for fun, because I absolutely wanted to share these helpful hints with you!

Here we are, 3 days before Christmas. I realize there are some who have done all their shopping and all their wrapping. But in reality, there are a good number of you, out there, who are like me - shopping’s done; wrapping is progressing. But due to the last minute rush, other things around your home are not being given quite the attention they deserve.

Are you wishing that others (especially some of the shorter ones!) would see the need to empty the garbage, or gather the laundry, or put away *their own* things? WELL - I came across something that can help us! My friend, Lee Anne, over at Swimmin’ in Alphabet Soup, has just what we need to start the new year off on the right foot.

I’m going to put the link to her post in here - please click on it and head on over to read about ways that I’m sure we can work on helping our kids together. After reading, if you’re uncertain as to whether your family member qualifies or not, please be sure to read the requirements for admission. I think you’ll see that there is hope! (and remember, this is JUST for fun!)

Helping our Families <-----Click Here to see Lee Anne's suggestions for helping our families.

Enjoy & with any luck you’ll feel a little more hopeful after reading her ideas!

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Standing With You

This is a tough time of the year - excitement built before Thanksgiving, despite my best efforts to keep things as normal as possible. That ushered in the season of change, and what a season it’s been. School schedules have changed, therapy schedules have changed, and I feel like we’re pulling back from more things rather than being able to participate in more things. Are you struggling? We’re standing with you!

We’ve tried to keep things low-key, we’ve tried to plan, prepare and keep things as normal as possible, with a few exceptions for some family fun, some of which did not work out as planned.

And yet, the screaming, and the crying, and the hitting, and the, “I’m moving out” and the, “You’re not my parent anymore.”

As I read through posts from other friends, I know this is a time of year we all struggle - whether our kids have special needs or not. Things seem much worse this year, for our family, than last year. Maybe not “worse”, maybe just “different.” Though the struggles seem worse this year…

But then I remember, not too long ago, when there were no words…when there was just screaming and crying and meltdowns. And I try to be grateful for the words that he does express in anger. They’re not our “final destination” but they are a step in the right direction.

Maybe you’re struggling, too. Maybe you’ve drawn your line in the sand and you’re standing there. And standing there. Because if you’re like us, if something matters enough to make a rule about it, or have a firm position on it, you will stand - and stand - and stand firm. It’s exhausting. We know. And we know the price you pay for those things that really have to matter. And we know the struggle with this time of year. And we know the excitement of new abilities mixed with major regressions.

If you see us and we look a little frazzled, it’s ’cause we are. The things that are normally difficult to do with the kids - shopping, running errands, for example - are now impossible unless we’re both home. He won’t transition TO other people real well, or if he does, we pay a major price when he comes home.

But we’re not sinking. We’re digging in. We’re enjoying as much of the pre-Christmas fun as we can, because we have other kids who don’t have trouble at this time of the year. We’re not being defined by the issues, but rather trying to support and make a way, despite the issues. We’re playing music that we know is in his heart and his soul. We’re digging deeper - below what is exhibited - to get to the heart. To remind his heart that we are his and that we love him. To remind each of our kids that we love them - through and through.

I needed to read something like this tonight, so I figure there’s someone else out there who needs to read it as well. So if you’re feeling discouraged, we are here. We understand. Take our hand - and then stretch out your hand for the next person.

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When Best-Laid Plans Don’t Work Out

Today didn’t go as planned. This is likely to seem like a post full of complaints. It’s not. It’s real life. Hopefully, if I can pull off a small “writing miracle” it will turn into encouragement for someone else. Hopefully.

Here are 2 of our kids, posing for a picture at the Macy’s Christmas lights show, in Philadelphia. Big smiles, lots of fun…at least, I think they had fun. It looks like they had fun.

See, I wasn’t there. I had planned to be there. We had planned for all of us to be there. We’d done the usual routine: prepping the kids, reminding them that they went last year and had so much fun, and that we were eager to go this year, and have a fun family outing.

Last night, when we were prepping Picasso (again), he started in with, “I’m not going,” and “I’m leaving home.” We came back with, “We’re all going; we’ve been preparing for this. It will be a fun, family outing.” And when I went to bed last night, I was convinced that we’d all be going and having a great time.

When I woke up this morning, I was still hopeful that we would all be going. Until the anxiety set in, in the form of fighting. If there was something to fight about, he was fighting about it. I was still convinced we could go. After all, I’m SuperMom - or at least, that’s what everyone thinks. But you know what? Even “SuperMom” hits the wall sometimes and doesn’t have strength left to climb over one more hurdle. And that’s what happened today. A big, hard (figurative) smack into the wall.

Sometimes, it’s ok to pack it in. So Picasso and I sent Tim & the other 2 off to the city. Yup, we reached “that day” when one parent stayed home with the kid who just couldn’t, while the other parent took the kids to an outing. They said they had a lot of fun!

Tonight was our church Christmas dinner. We stayed home from that as well, as all of our viable childcare options were attending the dinner. And while there was an option for childcare, it was not someone that our son is familiar with, and it would have been a setup for disaster, especially after the day he’s had. Not a huge problem, just a reminder that life is different - there won’t be a Christmas party in our season.

A few weeks ago, we were putting some 3″ wide ribbon on our tree. As we pulled the ribbon off the roll, Picasso & our Princess gathered up the rolls, sure that they could do something with them. (Because, Jenny, #youmightbeanautismparentif you have to keep every piece of paper, rock, shell, ribbon roll…right?)

Well, Picasso did make something out of the ribbon rolls. He made candy dishes out of them. So clever! And they’re lovely!

Unfortunately, in his mind, he made them for “people who come over at Christmas time.” That sounds nice - but - people don’t come over at Christmas time. The line to knock on our door…yeah, there’s not one. Now a lot of that is because we’re busy - therapies, homeschooling, other appointments through the week. And, because of Picasso’s issues, we don’t do a lot of inviting. We do a lot of “we’ll meet you at ____.” Or we attend a party and hope that we can make it through the party. (I must say, the past few parties we’ve been to, have been HUGE successes for our guy!)

But, now I was stuck with a heavy heart because he’s worked hard at gathering the candy, wrapping the ribbon, making & executing the whole plan. We have more ribbon set aside for the other rolls, and one seems to have a design on it. Yes, in Sharpie.

I took a picture and posted it for my Twitter friends - a whole group that really gets the general frustration in all of this - because he worked hard! A few friends replied kindly - I was so happy to remember that others understand. We’ll be sending some of his candy dishes to a couple friends who each asked for one, because that’s just what you do when you know someone’s kid has worked so hard at something.

Here’s where I’ll try to put an encouraging spin on this. Bear with me. Not sure I’ll succeed.

We’ve been blessed with a guy who is uniquely amazing! When you see us, we typically look pretty good and that’s because he can hold it together while we’re out. But only for a certain amount of time. Not indefinitely. Maybe your child is like ours - we understand! And I know there are others whose kids struggle with a lot more than our guy does; families who struggle with more than we do. I get that. But we all have hard days. Ups & downs.

Reach out. Find a friend. Be a friend. Remember that everyone struggles and hard days are still hard days. Moms and Dads try their best and still sometimes come up short. Best intentions sometimes fall apart. Never hesitate to ask if someone needs help - that’s good to remember in life even without dealing with special needs.

So if you have a day where you figuratively hit the wall, I’m here. If your kid makes something awesome, I’d love to have one! If you are feeling down, I’ll gladly listen, because friends stepped up for me today, and I’d love to return the favor!

At this time of year, it’s so nice to reflect on our friends and family - we’re grateful for you all!
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A Touch of Nostalgia, Part 1

Fond memories of Christmases past always inspire me to new adventures with our kids.

Growing up, we didn’t have extended family just around the corner, or even in the same town. Extended family was an 8-12 hour drive, depending on which family we were visiting. I loved visiting the grandparents - all of them - but my favorite, most nostalgic Christmas memories come from my mom’s side of the family. If you knew them, that would be no surprise as they do things in a big way, especially if there are children involved. And it makes for some amazing memories.

For example, Mom’s parents lived out in the valley. The nearest neighbor….well, I remember when a neighbor built a house and moved in up near the bridge, which was still a substantial walk from the house (especially when you were younger than 10years old).

Anyway, they decorated for Christmas in a big way. They used those large, colored lights to decorate the house. That’s probably why I still love that type of light today.

The house was outlined in these beautiful lights. What a great sight - crossing the last little bridge, rounding the bend, and there was the house, decked out and ready. Best of all, they’d tell my brother and me that they decorated so much, “because we knew you were coming!” Seriously? What kid doesn’t love that?! Every Currier & Ives picture, and every Thomas Kinkade painting of a cottage reminds me of going to Ohio for Christmas. The nostalgia, the simple beauty, the solitude of one lone house.

So they used the big, colored bulbs, and I’m pretty sure the decorations looked something similar to this:

That looks nice - bright colors, simple designs. However, when you’re a young kid, and you hear, “We did this because we knew you were coming,” and the family goes over the top so that even Santa makes a Christmas Eve “appearance” on the roof (complete with bells and heavy footsteps), I tend to remember the decorations a little more like this:

Large. Winter Wonderland. Over the Top. So exciting for kids of young ages! Who wouldn’t soak up being the center of that kind of attention?

I know there are many who don’t like the large, colored lights. That’s ok. I won’t hold it against you. ;-) And honestly, we use white lights around here a lot & we can keep them up year-round because they aren’t just Christmas lights. But these lights have a special place in my Christmas memories.

{Please realize, my recounting of the facts may not be entirely accurate. Clearly they’ve been filtered through my experiences. And while my intention is to be as accurate as possible, these memories come from 25-30 years ago, but they are the foundation for the fun that I love at this time of year.}

Any great nostalgic memories you’d like to share? Please feel free to leave a comment ~ I always love to hear from you!

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‘Tis The Season

I love this time of year! There are so many things to see and do - activities geared toward family togetherness. And that is where we’ve been - a few extra things going on this season, plus the usual craziness that comes at this time of year with shopping and wrapping.

This is the last day of school before the Christmas break starts. To some, the idea of a couple of weeks with their kids instills fear and frustration. Not for me - I love hanging out with my kids, with no particular agenda. {Ok, side note: with our guy’s issues, there is often *some* agenda, otherwise the day goes downhill faster than a sled on an icy hill….} I’m looking forward to doing a lot of baking that we haven’t gotten to yet, helping them wrap their presents for each other, watching some Christmas movies, drinking some hot chocolate (bonus: they all seem to like peppermint in their hot chocolate this year!).

I’ll hopefully have a few more things to post before Christmas. We’ve had some fun stuff going on lately - like Picasso choosing to organize his part of the closet. (Read “fun” as “exciting-yet-slightly-terrifying” as I really never know how it’s going to turn out!)

Meanwhile, if you need me, I’m here…hopefully up to my elbows in cookie dough, with wrapping paper underfoot, listening to too many Christmas songs, and sharing some laughs with 3 of the BEST blessings I’ve ever received!

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Larger Than Life

Those 3 words are the words someone used to describe Santa to us. He looked tall, on the back of the firetruck at the parade last weekend.

Tonight, we got to meet Santa in a quiet, private room, away from the hustle and bustle of the large group of other children waiting to see Santa. We were so happy that one of our town friends contacted the mayor on Picasso’s behalf, to suggest some quiet accommodations so that we could participate in this event. (I’m even hoping that next year, maybe we can participate without the accommodations we needed for this year.)
We got to town about 35 minutes early and parked and walked around near the borough hall where Santa would be. We played “Simon Says” near the police station (downstairs of the borough hall) and got to informally “meet” a few policemen this way. Shortly before Tim arrived, we saw a guy in coveralls and a Santa hat getting things out of one of the police trucks. As he headed our way, Picasso shouted, “Hello, Mr. Policeman!” The man came over to us and said, “Hi, I”m the police chief.” Picasso was in awe - the police chief wore a Santa hat while heading out to direct traffic! The chief asked if we’d be heading down to the train to meet Santa and I told him of our arrangement for a quiet meeting with Santa. He said that he had seen the email exchange between us, the mayor and the lady who organizes the kids for seeing Santa, and so he knew just who we were. After we saw Santa (yes, jumping ahead here), we exited the back of the building and the police chief was out front so Picasso took Tim to the police chief and said, “Hi, Mr. Police Chief! This is Daddy!”
Tim arrived in town a few minutes before Santa did and we had time to play a few more games, watch as the crowd grew closer, and then retreat to the back of the building as it got to be too busy and too loud for our guy. We watched as they lit the tree in front of the building, while we stood in total darkness, behind the building. Maybe someday we can stand out front - but it was nice and quiet and we had an unobstructed view. Can’t really beat that!
We ran inside to the room they had arranged for us. We heard the crowd come into the building but we had a nice, quiet room. Picasso’s ears perked up as the noise level grew louder, but he did not seem overwhelmed at all, and handled himself quite nicely.
And then, we saw him. And our friend in town was right - Larger Than Life! Santa apologized for being a few minutes late - apparently there was ice on the Polar Express. I’m sure the problem could *never* be with Septa! (right, Steph?)
Santa took a few minutes and talked to the kids, sat to hear the one thing they wanted most, stayed for a few pictures and was absolutely magical. If ever someone didn’t believe, I’m pretty sure meeting Santa - this Santa, the real Santa - would completely change their mind!
Santa to Mozart: “Always keep Christmas in your heart. And always keep that smile because when you smile, *they* all smile!”
Picasso, telling Santa that he wants a Hess truck and they’re on sale right now. Santa told Picasso that the elves, at the North Pole, can make the Hess trucks for free!
No words needed….
Really…Larger Than Life! Tim & I reach to right around the top of Santa’s shoulder.

We’d like to express our thanks to our friend at the flower shop who got the ball rolling for this special meeting - thank you! To the mayor and to the lady who made the detailed arrangements for this quiet meeting, away from overwhelming noise - thank you! This was a magical evening for each of our kids! We’re so grateful for people who were willing to help!

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The Big Day

Today is the day that we get to spend a few minutes with Santa. Picasso has stepped outside his *very* black and white world to try to believe in Santa. You can read more about it here.

Please understand, I don’t have any preference as to whether or not our guy chooses to believe in Santa. But when he struggles with a “gray” issue and chooses to make an effort, I am all for trying to help him and encourage his attempts at flexibility.

Our town has really stepped up. We are so very grateful to our mayor, people on his staff, and town business owners who are making accommodations for our son’s sensory issues. The plan for the evening is that Santa arrives at the train station at 7pm and then strolls up the main street to the borough hall, with all the kids. The children & parents gather in the borough hall to wait for their turn to meet with Santa. For our son who is overwhelmed by sounds, and hears all sounds equally, this activity would be a nightmare. But one of the shop owners in town was kind enough to think outside the box and suggest a few accommodations that might help us be able to attend this event. The mayor and his staff picked up on the idea and added to it.

The result? We will not meet Santa at the train. Instead, we will wait for Santa at the borough hall. When he comes in from his stroll up the street, our kids will get to spend a few minutes in a side room, away from the noise and hubbub, which will help our son immensely. We can get in, spend a few minutes, and get right back out again. They are expecting us, they have planned for us and they know about our needs.

Words can’t begin to describe how thankful we are for an opportunity for our kids to get to participate in something so festive at this time of the year.

To top it all off, apparently this Santa is “larger than life” - well over 6 feet tall. It all just seems SO absolutely perfect. We’re excited to share this opportunity with our kids & I can’t wait to post pictures and tell you all just how everything went.

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