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Tuesday, September 25, 2012

Party Party!

We like to party. I should say, I like to party, and my sweet husband just nods and smiles at my shenanigans. When I say "party," I'm not talking about the kind of partying young people without kids may partake in. I'm talking about any little reason I can come up with to celebrate something fantastic and special about our family. 

We had a Potty Party for Ella when she was potty training. Cake, streamers, the whole shebang. It was a pink cake, of course, with sprinkles everywhere and a huge "E" on it. We put pink streamers on Ella's chair at the table, because she was the Girl of Honor. We got a big kick out of that party. The Pretty Pink Potty Party.

We have an annual Last Day Of School party. Which, now that the kids are older and would rather play outside with friends than sit in the house chatting with their Mama, involves ingesting a ginormous piece of chocolate cake that has a bus painted in frosting on it, and says "Happy Last Day of School!!" Then everyone takes off out the door to search for buddies. But I'm still happy. Because I feel like I've made a special memory for my kids, no matter how short-lived. Every year, the boys ask now, "Will you make the bus cake for us today?" I guess they like the tradition as much as I do.


This weekend, I held a family tea party. Well, it was really a hot cocoa party, since no one except me likes tea. I found this cute little espresso set that has teeny cups and saucers that have crazy colors and designs on them, and I thought it would make a great tea set for our family. And the set came with 6 cups! It was meant to be. Early in the day on Saturday, I informed our family that they were all cordially invited to the cocoa party that evening, after we had played all day and taken baths/showers. So it was even cuter than I had thought it would be because it was a PJ Cocoa Party! Pj's make everything cozier and snuggly.

I filled our teeny cups with hot cocoa, and on the colorful little saucers I gave everyone a pumpkin cookie, three chocolate chips, two strawberries, and the classy piece de resistance...two gummy worms. I lit candles on the table and called my clean, sweet children to the Cocoa Party. Alex nodded and smiled and tolerated my craziness.


We sat in warm candlelight, eating our special treats and sipping our cocoa out of mini cups while holding our pinkies out. I told everyone how much I loved them and how much I enjoyed spending time with them. We talked about the day we had had, and what the next day would hold. We discussed at great length the pros and cons of sour gummy worms versus sweet, and Ella volunteered to eat any worms that other family members didn't want. Then we snuggled all the kids off to bed. It was a sweet moment, that Cocoa Party.

Here's my point. You can celebrate anything. You can find any little moment to make a celebration out of the smallest details of life. This is one thing I love more than anything else about Motherhood: I get to shape the world for my kids, at least for a short time while they're young. I want to show them that life is so good and so much fun. Life should be held onto with both hands and raised in the air and cheered out loud for its glorious, amazing moments. I love showing my kids that there is always a reason to celebrate. 

I have been called "exuberant" by some people who know me well. There are times I wish I wasn't so exuberant, but mostly I can't help it so I just embrace it. If exuberance is loving life, then I'm exuberant with a capital E. 
I love to party with my kids. And my husband, who has learned he can never talk me out of balloons and streamers and cake if there is even a minuscule reason to celebrate something. (I like to think that he secretly loves the parties, because as a grown up we don't have the opportunity to celebrate many things with cake and streamers, just for fun. And I like to think he thinks I'm exuberant and not crazy-loopy. I appreciate the way that he lets me be me without any boundaries or criticism.) 

Why not celebrate potty training? Or a lost tooth? Or a Tuesday? Or just being a family? I want my kids to know that celebrating something is a way to cherish the moment, and there are so many moments that should be cherished and cheered. I want my kids to be as exuberant about life as I am. So bring on the cake and teeny cups! Pj's and cocoa for everyone, I say!

Saturday, September 22, 2012

Beginnings



Our school year has begun. Jonah and Ben started 5th grade, Aidan 1st, and Ella began preschool. At the bus stop on the first day of school, there was a huge rainbow that stretched over our neighborhood. I took that as a very good sign about the year to come.

This is the first time all the boys have been gone at school all day every day. It has proven to take some getting used to, on everyone’s part. There have been no major problems, so that’s the good news. The mornings are running more smoothly than any other year, too. The boys are cooperating with the tasks they have to complete before heading to school, except for brushing their teeth, of course. (Aidan does brush without any problem, I should note, in case he ever reads this!) There has only been one morning so far where Aidan has been in tears about going to school. And only a few evenings where Jonah complains about various worries about school.

I have everything down to a science this year. Last year I was overwhelmed with having three school-aged kids and a toddler. It takes a lot of organization (making sure they have a nutritious breakfast, making sure they do their homework, making sure homework doesn’t get lost between the table and the backpack, making sure everyone has a snack and water bottle in their backpacks for school, making sure teachers are aware of any med or behavior changes, making sure we find time to play, making sure we make it to therapies, making sure the kids get to bed on time, making sure I don't forget to give lots of hugs…) and our lives are not usually organized because we’re flying by the seat of our pants trying to just meet everyone’s basic needs while we deal with rages, SPD challenges, new tics, medications, etc. Not to mention all the colds, flus, ear and sinus infections, and strep the kids start getting the first week of school and don't end until half-way through the summer!

This year I'm on top of things. We have a shower schedule, so boys don't get too "stanky." We have a morning schedule posted, as well as an after school schedule. We decide who is having hot or cold lunch at night. We put snacks in backpacks the night before, and fill up water bottles. If I'm really ambitious, I get the coffee pot set up for my Life Juice to brew right away in the morning. I'm on top of things.


It was a tricky first week when the three boys were at school all day. I miss them! But then, Ella went to school. Two mornings a week, for two hours each day. Ugh, it was like a punch to the gut. I felt a deep, uncomfortable, anxious, heaviness in my heart. I'm happy and proud that our kids are capable of doing what they're supposed to do as humans- go out into the world, make friends, learn, enjoy life. But I'm sad for me. The house was too quiet, too empty, there was no one to worry about. No one's tushy to wipe, no one to feed, no one to yell "MOOOO-OOOM!!!" eight thousand times, no one to negotiate arguments with...I knew this time was coming, that our lives were changing, and I knew it would be hardest for me. And it was. As my dad pointed out, I've been a full-time care giver to intensely needy children for ten years. It's hard to know what to do when that changes. 


So I did some things just for me, these first couple weeks of school. Things like baking, running, reading a magazine (!!). It sounds crazy, but it was hard to do things that were just for me because I'm so used to doing things for my family. But by the end of this past week, I had had a few moments of joy while the kids were all at school. If I can let myself relax enough to enjoy these few short hours every week, I think we'll all be happier people. I find I have a lot more energy and patience for everyone when they get home from school. I'm happy to see them all, glad to hug them as they walk in the house, grateful I get to be here to hear about their days.


We'll make this work, this whole 'kids growing up' thing. It's tough on Mamas, but it's good for kids. 

False Sense of Security

I have never forgotten my high school Driver's Ed teacher's exact words: "Do not let yourself be lulled into a false sense of security." This is good advice for driving, but it has also  proven to be great lifelong advice for me while raising kids who have multiple special needs. Since our first babies were born, we haven't known what was coming next. The kids frequently get sick, we have a heart defect to monitor yearly, another child has a heart "anomaly" that we keep track of, we have hearing loss issues to monitor, eye problems have cropped up, surgeries for tubes in ears and tonsils removed, blood tests to check levels of meds and internal organ functioning, changing sensory issues, allergies, behavior changes, sleep changes, med changes, school challenges...the list goes on and on. 
No parent ever knows what is coming next for their kids, and even if you have typically developing kids, there are surprises and challenges along the way. I think because our kids have special needs, we probably have a different type and higher frequency of challenges that take us by surprise. Sometimes it strikes me that this crazy life of ours isn't "normal," it's not the typical experience of most families to face the daily challenges that we do. It does feel normal to me, because it's always been this way. You get used to the years and years of sleep deprivation, anxiety, ups and downs. Especially when I have time to sit and think, I realize I'm really tired. Most parents are tired, I know, but I wonder what it's like to not have kids with special needs that can be so exhausting at times. I wonder if it's "normal" to be bone-soul-tired as often as I am. 
My trick is I never sit down. I just keep going and going, like that old Energizer Bunny commercial. My sweet, naive husband frequently makes the mistake of sitting down (and trying to "relax"- ha! Has he met our kids??), which makes him realize how exhausted he is, which makes him not want to get up to do the next thing that has to be done. But I rarely sit down. I know if I do, I'll be done. I'll realize how completely spent I am, and I just won't be able to get up again. But if I stay on my feet and keep doing the Mama Thing, I'm able to keep the exhaustion from creeping in.

One thing that really aggravates me, though, is that for all the energy I feel like I expend, there is still so incredibly much that still needs to be done each day. There are often four little mouths asking me for something, eight arms needing hugs, knees needing bandaids, feet that need rollerblades put on them, bike seats that need adjusting, shoes that need finding, floors that need cleaning, toilets that need de-peeing, kids to be fed and drinks to be given, laundry to be done, groceries to be bought, therapies to be attended, meds to be given, brushing to be completed, fights to be solved, dust bunnies to be found, hamsters to be fed, toys to be put away, sheets to be changed because someone peed in them, doctors to be called...sometimes all in one day! 

I always feel like I have to be "on guard" for whatever unexpected thing might cross our path. Watchful, but not overbearing. Attentive but not hovering. Just when you think the kids' behavior issues are relatively under control- no one has broken anything or drawn blood for a while- a huge rage creeps up. Just when you think you're taking your kid into the doctor for a routine checkup, you're told you need an immediate EKG because the doctor hears something alarming in your baby's heart. Just when you think everyone might actually be sleeping through the night for once in 10 years, someone wakes up with a night terror. 

Parenthood is full of surprises, some fantastic, some terrifying. You never know what each day will hold until you live it. I've learned I have to cherish each fragile moment that is good, and deal with the challenging moments as they come.  I'm never lulled into a "false sense of security," because I've learned how very delicate and changing life can be, but I am able to squeeze the joy out of all our great moments as a family. And I'm content with that.

Saturday, September 1, 2012

"The Handicapped Children"


Before summer vacation ended, my dad (aka "Papu") took the kids and me out for a morning of bowling. It’s an activity that all of us love to do, especially when there’s a Papu along. I called the bowling alley the day before we went to make sure we didn’t need reservations, and to see if we could use a cool ramp (you perch your ball on it, give the ball a push, and it rolls down into the lane) that Papu had seen some other kids using the last time he took the boys bowling. Papu was so excited because he knew the kids would have much more fun bowling if they could use that ramp, especially Ella and Aidan.


I asked the young girl on the other end of the phone if we would be able to use the ramp the next day. She said dismissively, and I quote, “No, that is for The Handicapped Children.” She didn't specify what kind of handicapped children the ramp was for. She didn't ask me if I had handicapped children. And before I could respond, she quickly put me on hold to see if we would need reservations the next day. As I sat there with the phone in my hand, I grew more and more irritated. First of all, the way the girl said “The Handicapped Children” just annoyed me. Like it was a title of some kind. And then it hit me- hey! What is the definition of “handicapped”? Because my kids could be in that category, depending on what we’re talking about. My blood started boiling. I realize this is not a major deal in the grand scheme of life- it's just a bowling ramp for crying out loud. So I don't know why it made me so irritated when the girl said what she did. I admit I am probably hyper-sensitive to all things "special needs", and quite possibly a little touchy about this topic.

When the girl got back on the phone, I said “I understand that the ramp is for kids who have special needs, but I’m wondering what you consider ‘handicapped’. I have four kids who have various special needs, and three out of the four get weekly Physical Therapy. Wouldn’t that constitute being ‘handicapped’?" The girl fell over herself, stuttering. She said that yes, of course we could use the ramp and just to ask someone when we arrived at the bowling alley to get it for us.

It struck me that this was one circumstance where I was willing to be brutally honest about my kids’ limitations in order to get them something that would make their bowling more fun, and a positive experience for all of them instead of a frustrating one. If there had been a child who needed the ramp more than my kids did, I would have given it away in a heartbeat. But I knew the bowling alley would be almost empty, and so why couldn’t my kids use the crazy ramp?

When we got to the bowling alley, we got the precious ramp without any problems. We got our feet, big feet and small feet, into fun, clompy bowling shoes. Papu got a kick out of lining up the ramp just so, then Aidan and Ella would put their ball on top and shove it down the ramp into the lane. It made our time bowling so much more enjoyable having that ramp, because Ella and Aidan could actually participate well. Ben and Jonah used it a couple times too, but mostly chose to flail the ball down the lane without any assistive devices.

Ella won the game of bowling! She didn’t care whether she had won or lost, she just loved having time with the big guys and Papu, doing something with them that was different and fun. Her brothers were quite impressed that their baby sister had the highest score.

The bowling alley has an arcade, and of course the kids wanted to use the tokens they had gotten as part of our package. Total nightmare. My kids + arcade= tantrums, trouble, whining, disappointment, and ultimately total meltdown for all parties involved. Too many sounds, lights, stimuli… They want so badly to play in arcades when they get the chance to, but boy, arcades do a number on their sensitive little nervous systems. It was interesting to watch them and talk with Dad about the whole thing as it was happening. It was a perfect demonstration of how our sensory systems play such a huge role in our daily activities, and how sensory overload is so painful when you have SPD.

The kids eventually recovered from their Arcade Meltdowns, after sitting strapped tightly into their carseats, in the quiet car, watching a movie on the way home. Bowling with Papu was a great time. But remind me never to let the kids enter another arcade if I want to maintain my sanity.

This whole bowling experience made me think about being “handicapped.” What does that word mean? Are my kids handicapped? I’d say yes, in some situations they are, but in other circumstances not really. I decided that this time, I was going to use the “handicapped” card to our advantage. It was one instance where I was happy to say yes! My kids are handicapped! So give them a bowling ramp, already.