He advocates

I remember a time in the not-so-distant past when I wondered to myself when or if I would hear my youngest child speak in sentences.  If I’d ever hear the soft “I love you, mommy” or have a conversation in spoken words with him.

It took me a great deal of time and effort (and study) to come to the realization that communication can happen in many forms, and that you can never truly know what the future may hold.  As it turned out, he would speak, and there are days now where I wonder if I’ll ever enjoy silence again…

Part of communication is advocating for one’s needs.  We’ve become quite accustomed to the ways in which he advocates, and today provided a perfect example.

He walked across the living room today while the room was mostly silent.  He grabbed his headphones, a pair of black and white noise-muffling over-the-ear headphones which do a fairly nice job of reducing nose levels in a room.  In this case, the room was already pretty quiet, so I’m going to assume that he was seeking the gentle squeeze, the proprioceptive input that the headphones also provide (his first method of advocating for what he wants and needs).

19275190_10213640797596526_2287359316027280750_n

The headphones have a panda face on each ear, and are just so sweet that I asked him if I might take a photo.  “No”. “No?” “No.”  And that, my dears, is that.  No.  He did not wish his photo to be taken.  (his second advocacy)

He then asked for a snack, and guided me through exactly what he wished for.  This isn’t so much advocating as requesting, but you could count this as well.

It takes being truly comfortable with your space and who it contains to be able to do what he did, and I am forever grateful for the fact that he knows without a single doubt that his voice will always be heard, his communications will always be taken into account, and his requests always considered.

Yesterday, I took both boys to their first dance class- a movement class for kids with special abilities.  I was so excited that he wanted to try it out, and they had a wonderful time.  We saw a girl who had been in Wonder Boy’s preschool and it was remarkable to see how much she’d accomplished since those days.
When we were getting ready to leave, WB said that he did not want to sign up to return.  While I was saddened by that, I also have to respect that he made his wishes quite clear to us.

We must always consider people’s needs, no matter how they communicate but especially those who are not able to communicate verbally- look for other ways in which someone is speaking to you, whether that be in actions or in response to your actions.  Take time to meet people where they are, rather than force your methodology and your ideology on them.  And for the love of pete, respect people.  

Surviving winter break

Surviving winter break

I used to have a very idyllic view of winter break.  That glorious bit of time when the kids are out of school for a week or more, with the days spent sledding and sipping hot cocoa and making snow people and snow angels and having snowball fights. The very idea of ending each day by a cozy fire with the kids all tuckered out brings a smile to my face.

This is about the closest that I ever get to a fireplace.

And frankly, if you’ve met me, you know that my actual idea of winter fun has nothing to do with being outside in the cold.  I’m freezing if the temps dip below 75 degrees.  But here we live, in the frozen Northeast, and it snowed early this year.  And then the thermometer bottomed out, providing us with wind chills that brought frostbite warnings. Guess what?  No sledding.  No angels.  No snow people.  No snowball fights.  And I’m really okay with that.  I’m not sure where I got that “idyllic” view of winter.  It’s not my reality.

When I was young, I could stay out in the snow all day, or so my mother tells me.  I think I’ve blocked out this memory to protect myself.  I hate the cold so very much.

So what do you do when you have two very rambunctious kids in the house for a week?  Let your husband take the week off to be home with them while you go to work.

Okay, I’m kidding.  Sort of.  I did that, but mostly because he had the vacation time to use, and I did not.

The fact is, it can be really challenging to have any kids home for the week and have it be too cold to send them out to play.  The already small apartment starts to feel reeeeeeallly tiny.  Have you ever seen Willy Wonka and the Chocolate factory?  Think shrinking hallway.

Solution: We can’t let them have too much “tech time” as it’s known in our house, or they start to have pretty bad responses to various things (anything from being asked to take a bathroom break to eating lunch).  We tend to restrict tech time anyway, so instead the tactic over Christmas break was to have activities in rotation.  I imagine my husband feeling like the entertainment director on a cruise ship: “Okay, everyone, now it’s time to build a pillow fort!  At two o’clock you’ll be reading in your room, followed by thirty minutes of video game time on the Lido Deck!” This rotation of things to do really helps prevent the boredom from settling in.  Combine this with a lot of sensory activities and opportunities, and I think we all survived it pretty well.

And sure, there was the daily (hourly) argument to break up, and there were good breaks in the middle such as Christmas Eve (lots of baking) and Christmas Day, and spending time together as a family.

Still, I think that after nine days at home with the kids, he was quite ready to return to work yesterday.  CubicleLand must have been a welcome sight.

Holiday inclusion

Holiday inclusion

It’s fair to say that Speedy and Wonder Boy, for all of the ways in which they drain us of energy, have also worked really hard and have come a long way developmentally.  It’s also fair to say, though for different reasons, that Wonder Boy has been more excited about Christmas this year than he has ever been in his entire life.  Since Thanksgiving he was asking when we would decorate for Christmas, and luckily for him we tend to do just that the day after Thanksgiving.

He has been walking around singing Christmas carols and has learned about Chanukah and Kwanzaa, and wants to know why we aren’t Jewish (we aren’t Christian either, but I’m not here to go into the derivation of most Western Christmas traditions…).  He has watched all the movies about Christmas, and has visited with Santa three times so far.  Let’s just say, this kid is super stoked.

A few weeks ago, my husband came to me and asked me to take December 15th off of work.  I looked at him and said “We’re going on the Polar Express, aren’t we?”

I love doing that to him, I won’t lie.  Not taking away his chance at a surprise, but being able to guess the secret.  He does not like this as much as I do, I promise you.

A mix of incredulity and humor washed over his face, and he asked me to please keep it a secret from the boys.  We invited my mother, who has really been our anchor, to join us.

If you’re not familiar with the story, The Polar Express was a book written by Chris Van Allsburg, and it was published in 1986.  It tells the story of a boy on the brink of no longer believing in the magic of Christmas.  As a 43 year old who still believes in this magic, I have a hard time understanding his viewpoint, but whatever.  I believe in Santa and I always will, and you will never tell me otherwise.  This holiday, and others like it, bring out a magical love between family, friends, and even strangers.  Our homes glitter with lights and kindness and good smells of things that we share with everyone.  We open up our homes and our hearts.

In 2004, The Polar Express came out as a movie and many were captivated once more by this beautiful story. Tom Hanks voices several characters, and you can even see a little of him in each of the characters faces.

Across the country, there are towns with active train stations and some of them host “Polar Express” excursions.

When we arrived at the cavernous marble train station, two hours from leaving our house,  I was hit with blaring music of the holiday variety.  There were so many people- a mix of pajama-clad Polar Express riders and regularly-clothed people about to embark on a trip to New York City. There were people in wheelchairs.  There were children with Down Syndrome.  There were autistic children, including my own.  There were -gasp- people without any disability whatsoever! This was a truly inclusive environment.

Wonder Boy quietly took it all in, as he does, and Speedy happily chattered about this person and that person and OHMYGOSH there’s a mechanical Santa! As we rode the train, Wonder Boy discovered that if he flapped his hands, the lights inside our train car looked very interesting, indeed.  Speedy listened for the train whistle and his eyes widened whenever he heard the sound.  Actors playing the parts of the characters in the book came around and chatted, letting Speedy chatter at them and kindly answering their questions. Wonder Boy barely said a peep for two hours, and even turned down the cocoa that was offered.

After a two hour ride, Santa finally arrived in our train car, with his elves giving out the “first gift of Christmas” (one of the reindeer’s bells) along the way.  The tension was palpable for the boys, and they seemed about to pop when he finally reached our seats.  He asked my mother if I’d been good, and then asked me if my husband had been good.  He never asked if the kids had been good, because he KNOWS.  He always knows.

After the ride, we stopped for a quick bite to eat on the way home.  Being the very literal person that he is, and a person who only eats in the restaurant or at home, Wonder Boy refused to eat in the car, insisting on eating when we got home.  There is no point in forcing a child to eat in a way which makes them uncomfortable, so I said okay.  And at nine o’clock at night, tired and happy, he ate cold nuggets and cold french fries.  And you know what?  That’s totally okay.

It’s okay to admit that you’re sad

For the last couple of days, a sadness has washed over me.  More than washed over me- swallowed me whole and left me feeling like someone had opened me up, removed my insides, and stitched me back up again. To the point where when someone asks me how things are going, I plaster an empty smile across my face and do what I’ve done for years, I pretend. I often get sad during December, but it typically hits me mid-month so I was surprised by this.

Yesterday at work someone asked me “How are you always so put together?”

When I finished laughing thirty minutes later, I admitted to her that my “together” is a facade.  I appreciate what she was telling me- I’m glad that my total hot mess of an existence isn’t utterly obvious to everyone- but I had to share with her that this is NOT “put together”.  Here’s why I didn’t just simply say “thank you” and move on with my day:  so many of us are walking around telling everyone that everything is fine and plastering a big fake smile on our faces and presenting a filtered Instagrammed version of our lives.  The result of this is that so many people are sad or struggling or suffering or all three, and are also assuming that everyone around them is perfect and happy and put together.  She and I connected over the fact that we really struggle to put ourselves together and get kids out the door each day, let alone accomplish anything above and beyond that.

Later yesterday afternoon, someone else in my office asked how I was doing.  “Stressed, actually.  Really stressed.”

While that change in approach didn’t take away my sadness, it did something more: validated it.

Sometimes, we are sad.  Sometimes we might be struggling.  And it’s really vital to acknowledge that, and to go forward from there.

Last night, my husband turned the tables on me, saying to me what I so often recently have said to him.  “I’m worried about you” he said, as he rubbed my back.  I was in bed at 7:30pm and crying.  “Will you please call your doctor on Monday to talk with her about this?”

With that conversation, and having finally opened up to him about being sad and not knowing why, I felt the 1,000-pound weight lifted off of me.  Suddenly the loneliness was replaced by the sense that I have someone with me to get to the other side of this.  It didn’t remove my sadness, but at least I knew that I had an ally.

As we plow headlong into the holidays, it’s important to acknowledge and validate when you are sad.  So many people feel that they are all alone, particularly at Christmas.  If you are feeling alone, if you are in crisis and need emotional support, please consider reaching out to the National Suicide Prevention Hotline at 1-800-273-8255 or use the Crisis Text line by texting HOME to 741741.

By the way, the National Suicide Prevention Hotline website (linked above) has something called the “Safe Space”, a series of YouTube videos meant for helping you find calm and get back to center if you are feeling particularly anxious.

And remember, it’s okay to admit that you are sad.

 

Birthday parties don’t have to be torture

Birthday parties don’t have to be torture

One of the things that I have always struggled with is the idea of children’s birthday parties.
When I was a child, my parents hosted birthday parties for me.  I am certain that they were enjoyable, and that my mom handled them with ease.  She doesn’t have the same anxiety that I do, and isn’t derailed by something as seemingly simple as gathering children together in one space for play and eating cake.

laura's fourth birthday
My friends are probably going to kill me for this

So when did things get weird?  I suspect that a lot of it has to do with my desire to not hang out with people I don’t know.  I’d classify the parents of all of my kids’ classmates as People I Don’t Know.  And that sets my amygdala into massive panic mode.  It may also have something to do with the fact that when my oldest was turning 8 (maybe? I can’t remember now), we invited his entire class over for a birthday party and no one came.  Not one single child.  He was devastated, I was devastated, and I may have vowed never to put any of my children through that again.
For many years, we simply celebrated with family members, and that worked…sort of.  I can’t help but worry that I deprived them of some vital growth experience.

Fast forward quite a few years, and we now have kids with diagnoses, kids who struggle in loud places, kids who mostly do parallel play.  Kids who aren’t developmentally on the same plane as their peers.

Last year, Wonder Boy was invited to a birthday party.  It wasn’t his first invitation, but we felt like he was ready to give it a go.  He handled it mostly well, and advocated for when he was ready to leave.  But it was definitely clear to us that he stood apart from his classmates.  While they all joked and laughed and played together, he sat there playing with Silly Putty and staring off across the room.  They didn’t exactly exclude him, but no one tried to really include him much in the conversation.  And that’s fine, they’re kids, and they haven’t really learned that skill at that age (they were four-going-on-five).

This year for WB’s birthday I decided that rather than attempt to plan a party which would make me ridiculously anxious (because let’s face it, it’s all about me), I would schedule a playdate with his closest friend.   She happens to be at the age where he is developmentally, and it really works for both of them. She also has two older sibs, so Speedy has friends to play with as well.  All of the kids get along really nicely, and we enjoy spending time with their parents. It’s a win-win for everyone.
Not long ago, WB and Speedy went to the youngest girl’s birthday party, and they did pretty well with the limited time and the very active play (at a place with a climbing structure and ball pit).  While we weren’t ready to do that for WB, we appreciated seeing how well he did there. Her parents are smart- they provided pizza and cake, and the treat to go home with was a balloon with a bottle of bubbles attached.  Simple, affordable, and not some tiny cheap toy that will become the source of sibling rivalry.

I like to provide a takeaway in each post, something which really shows what I learned and that you can use when you’re feeling frustrated or unsure of how to handle a situation.
My takeaway from the birthday party stuff is this: You know your children, and what will best meet their needs, but also don’t be afraid to give them the opportunity to surprise you.  We know that WB can handle a standard birthday party, but we also know that he’s happiest at a playdate with fewer kids.
Besides, who really wants to assemble 25 goody bags?

Each new day is an opportunity

Each new day is an opportunity

I also like to think of each day as an adventure.  I’m a little like Indiana Jones at times, carefully navigating the booby-trapped catacombs of supporting and loving kids with atypical* needs.

*their needs are typical for them, just not typical compared to most of their peers.  I loathe using the word “atypical”, but it’s short and easy to use. 

If you read my post yesterday, as well as some of the other eating-related posts, you have figured out that eating is… not easy in this house.  Everyone has their own issues.  This is mine:

IMG_0046
My child’s divided plate.  I want my own divided plates because I cannot STAND to have food touching other food.

So back to the Speedy’s breakfast drama.  Yesterday was the Major Smoothie Catastrophe of 2017.  So this morning, I decided to try a method that Speedy’s one-to-one aide uses at school.  Lunchtime is hard for him, and the cafeteria is too overwhelming, so she takes him to the OT room and gives him headphones and an iPad.  She puts on a series of Laurie Berkner videos from the Lullaby album, and he happily eats his lunch and focuses on the videos.

Could it be that simple?

Well, let me just tell you.

Normally on any given morning, it can take him up to 45 minutes to eat one bagel.  We put cream cheese on half, and butter with cinnamon & sugar on the other half.  And then it takes regular reminders to chew and then swallow the food.  Every day we go through this, and it degrades quickly.

This morning I told him what we’d be doing.  He sat down (with one half of a bagel) and I put on the videos in front of him.
In ten minutes, with zero prompting, he’d eaten his bagel and moved on to a yogurt.

I can’t even begin to express what a relief it was to go through the morning with no fights.

Feeding my kids is killing me slowly

Well that seems a bit harsh, actually.

But really, the struggle is REAL.

In order to maintain Speedy on the medication which does help him focus, we have to hyper-load him with calories and healthy fats.  This is not easy with a child who can’t remember to chew or swallow (or doesn’t want to, I’m not sure) certain foods. I will note here that his doctor is working with us to rule out medical issues.

Luckily, I have a pool of incredibly smarty-smart people at work who I can call upon for ideas. And I’m not just calling that because they read my blog.  They’re really smart.  I highly recommend working closely with behavior specialists.

This morning I tried idea number one: smoothies.  If chewing is an issue that causes daily fights (and OHMYWORD does it ever), then smoothies are an option!  I took the recipe for a peanut butter and banana smoothie (gag) and added the instant breakfast powder along with some almond milk, ice, and yogurt.  Okay, it was nasty.  I added some chocolate syrup in an effort to fix it, and hoped that the “Yay, chocolate shakes for breakfast!” sell would be enough.

healthy-lifestyle-woman-drinking-delicious-green-smoothie-eating-mixer-jar-vegetable-juice-isolated-white-background-54726170

Yeah.

No.

Not so much.

Admittedly, peanut butter and chocolate was a bad idea.  It’s fantastic if you’re talking peanut butter cups, but not so much if you’re talking drinkable breakfast.

Sooooo….. I kind of have a short fuse with this child of mine.  I can’t say why him versus all the others, or maybe my oldest two would tell you that I had it with them too.

This morning’s Big Smoothie Experiment rapidly degraded into a fight, when I took it way  too personally that he didn’t like it.  What is wrong with me?  All I have to do is try different ingredients!

I’ve long suspected that am the boys’ biggest problem, but I also suspect that many parents feel that way.  How do I teach them to navigate this world which is only beginning to understand them while at the same time teaching them not to act entitled?  How do I teach them ALL THE THINGS OMG?
This is what happens in my brain every. single. day.

Tomorrow we’re going to try something else- Speedy’s older brother had some alternate smoothie recommendations, and thank goodness that his cooler head prevails most mornings.  He gave me the opportunity to take a deep breath and recover.

I feel the need to leave you with at least one nugget of wisdom.  My takeaway from all of this was that it’s really truly NOT personal when your kids don’t like a food.  That tomorrow is a new day, and there are approximately 9,485,220 different foods out there waiting to be tried.  All of the world’s problems will NOT be solved by making sure that your child likes each and every one.

My other takeaway is that I really need to just calm the hell down.  Maybe I’ll switch to decaf….