more behavior

There is a great new show on A&E documenting a group of adults with Down syndrome called Born This Way. I've been watching it with the intensity of a scientist gathering information on an illusive animal. I want... no I need... to know that my buddy will mature someday.

I realize that he is only 7 and the behaviors he has today won't last forever. But the thing is, every phase can last so very long. My buddy first started throwing food over 5 years ago. While he no longer throws full plates of food, he's been known to shove a full bowl of milk and cereal (that he just asked for) with such intensity that it goes flying. That is 5 long years of cleaning up food that has intentionally been thrown on the ground.




I am willing to bet that my buddy has the biggest behavior challenges out of all the students in his school. It is so hard to imagine a time where he just does what he is supposed to. I'm not asking for a miracle. Maybe stand in line for 10 minutes without kicking the person standing in front of you. Perhaps walking down a hallway without throwing yourself on the floor. Not biting people. Sitting and working for more than 30 seconds.





Some day I hope to look back, laugh and say, "Remember how you couldn't leave him alone for even just 10 minutes? Like that time he pulled off the heating vent cover and filled the duct with cars?"

I expend so much energy always knowing where my buddy is and what potential victim is near. Worried if he's going to lose his mind in the middle of the outing. Feeling stress every time we go out. Just wanting to get things done around the house and not be in a battle zone. The anxiety when I read the log of how his day was at school.




I have a hard time explaining just how hard it is to be constantly redirecting unwanted behavior. Unless you live it every day, there is no way to fully understand. I think that's why parents of special needs kids tend to rely so much on each other (even just virtually).





I know my buddy has come leaps and bounds. He's learned not to run off into the street which is a huge deal. He has a good sense of what is physically reckless and will carefully climb down if he is up too high.






Most importantly, he has learned how to butter me up. He climbs into my lap, hugs and kisses me, snuggles in for a moment or two, then very casually says, "iPad??"

three and a half

I joke about waiting for the day when all the kids are in school full time and I finally have a moment to breathe. The truth is that hanging out with rara all day is a breeze. She is independent enough to play by herself - and still loves me enough to want to play right by my side. With no big kids home during the day, there is no one to start a fight with... because that little face is cute but she's an instigator. Rara has helped with the Christmas decorating and loves the story I tell about how this Advent calendar was mine when I was little just like her.

Rara talks all day long and makes me laugh all the time. She's rarely shy and loves to do things like shout, "Hey Mama! That guy right over there looks just like Santa!!" She will approach strangers to ask if she can pet their dog. She will run up to me out of nowhere just to give me a hug and a kiss.




The most painful part of the day is when she says those dreaded words, "Will you play with me?" Rara will spend about 10 minutes explaining who I am going to be and exactly what I am supposed to say. Inevitably I get it wrong. Then she spends another 15 minutes explaining it all over again... slightly differently this time. I am not allowed to say what I want or choose who I get to be. It's a bit of a dictatorship where rara is the supreme leader. I try to distract her with different fun activities like Play Dough or stickers or making a mess playing in the bathroom sink just so I don't have to play her game.




Rara asks every day if it is Christmas yet and tries to pry out of me what I bought her for Christmas. She was so excited to see Santa. She was the first one to climb up on his lap and the last to hop off. There was't even a moment of hesitation when he asked what she wanted for Christmas. She was thrilled to be talking to the big guy.




I love how little three and a half year old brains work. There is still enough magical thinking where things are never their fault. She doesn't always love to wash her hands yet she knows that by touching them I can tell. So she says, "I definitely washed my hands but I just don't want you to feel them." Every day rara comes to me with an ornament in hand and says, "This ormament accidentally came off the tree by accident." Just today I saw her do this:

Maybe in some other life these little things would make me mad or worried that she would grow up to be a liar. But in this life, she just makes me laugh.

ambition

I've never been a person with lofty career ambitions. For a while in college I pretended. I love houses so I thought I could be an architect. I'd read a Jackie Collins novel and thought I could be a business woman and wear power suits. I fell in love with astronomy and physics and thought I could be an astrophysicist. But the truth was that I was floundering and had no idea who I wanted to be. My parents even suggested I take a year off. I decided to just pick a major I liked and go with it.




For about 6 months I used my Earth Science degree (sort of) when I led Spaceship Challenger missions for third graders. Then we moved and I worked in an office which sucked the life out of me. While looking through the Yellow Pages one day (yes it was a long time ago) I randomly came across nanny agencies and the rest is history.

Once I got over the look people would give me as they said, "You have a college degree and you're just a nanny?!" it was the best job I ever had. I worked as a nanny for 9 years. I loved all the kids and spent my days playing... plus I got to go home and sleep through the night.


Turning cream into butter at school.


I used to think it was my biggest character flaw... this lack of ambition. Now I see it as my greatest strength. I never thought I was destined for greatness, so I don't feel let down by life because I didn't win an Oscar or become a great American novelist or win a Nobel Peace Prize. I think the grass is plenty green right where I am. I hope to teach my kids to appreciate what they have and enjoy the every day moments.




Taking just one picture that I love feels like an accomplishment. Raising three loving, kind humans - an amazing feat. Raising awareness about Down syndrome and increasing acceptance will be my crowning glory. Even if just one person was changed, it will be enough.

Live life. Enjoy life. Where you are right now can be wonderful.

school

I think it's safe to say that my buddy doesn't like school. If you ask him, he'll choose home over school every time. I wish I could blame school but I'm pretty sure it's not them. He has an amazing team that works tirelessly to keep him focused and engaged. The problem is he just doesn't want to.




My buddy sees school as an endless day of doing what other people want him to. Plus it's a lot of work. He has a classroom teacher and a special ed teacher both demanding that he learn. Then there's the speech therapist, OT, PT and psychologist all pushing him to be his best.

On his progress reports over and over I read things like: He requires consistent encouragement to succeed with tasks. He can complete 4/5 assignments within a session when he feels healthy and the reinforcer is meaningful to him. Unable to cooperate with this activity. Fluctuates significantly depending on behavior.




I know how smart my buddy is. I know that he is performing way below his potential. It's really frustrating. Will he always be so unmotivated at school? Will he ever want to have a job? Is there something I could have done better - pushed him harder, made fewer excuses?

I remember loving elementary school and looking forward to seeing my friends and learning new things. School should be something that puts a smile on a child's face. I hate that is's such a struggle for him. I wish I could observe him all day without him knowing to see what it is really like for him. I get a call at least once a week from the nurse that he was really mad and kicked a wall or hit his head or hurt himself in some way. It both breaks my heart and makes me want to shake him and say, "Buck up. Life is full of hard work"

Not knowing how to help your child is so hard.

style

Once upon a time, I had a very specific parenting style. Mostly before I became a mom, but even when I had two little ones just 15 months apart, I had ideals and high hopes. I made baby food and read them books every day. I had a schedule for cleaning and cooked meals. We attended play groups and story time. I bathed them daily.

Somewhere along the way, exhaustion, bickering and constantly being needed beat the standards right out of me. Now my parenting style is more of I Don't Wanna. For example, I think rara would love to take a dance class with her little friend, but when I think about signing her up, paying for it and then having to be somewhere at a certain time every week... well I just don't wanna.



For me it all comes down to time. For the past 8 years almost all my time has been given to my children. Newborns are needy. Newborn plus toddler - forget about it. Then there was Birth to 3 and endless doctor's appointments. Then kids in different schools at different times. Then another newborn and a long drive to school. There were nap times and snack times and early bedtime. So many demands on my time.

Now I drop off the big kids at school and have 7 hours to fill. I find that I'm feeling selfish with my time. I am more than happy to drop the laundry and meet a friend at the library, but I don't want many commitments. I want to choose if we just take the dog for a walk and hang around the house or maybe we have a bit of an adventure.



Of course that guilt as you scroll through Facebook and see all the kids and their sports, theater or art classes. Am I holding my kids back? I was involved in gymnastics and soccer. Are my kids missing out on something? But I don't want to spend my weekends driving here and there and watching a sporting event for one while trying to entertain the other two. I just don't wanna.

The weekends are the time we spend together as a family. To me that is more important than anything else. There will come a day when my kids are going off with friends and no longer want to spend all weekend just hanging out together. Plus they are getting a happy relaxed mom. So until the eye rolling starts when I suggest we all go pick apples together, I'm sticking with this parenting style.

joy

Turning 40 brought me a surprising dose of clarity and confidence. I lived a good part of my life feeling insecure, not wanting to stand out and being worried what others thought of me. I wore the clothes I thought I should and kept opinions to myself. I was making choices based on what I thought I should choose and had no idea I was doing it.

Then I heard this organizational guru talk about how you should surround yourself with things that bring you joy. For example, you pile all of your clothes on the floor then one by one, you touch each piece and ask yourself if it brings you joy. Plain and simple, if it brings you joy then keep it.

I realized that none of my shirts brought me joy. I wore them but hated the way they felt on my body. So I bought the shirts I really wanted - ones that felt good to put on and left me feeling confident. I feel like this little change has seeped into all parts of my life.

I'm a big fan of a daily phone conversation with my BFF just complaining and getting it all out. But I think there is a fine line of getting it out and laughing over it (because laughing brings joy) versus focusing on the suckiness and giving it power. The times in my life where I threw pity parties for myself were times I wasn't happy.

Photography has brought me such incredible joy. In the past I tried sketching, crafting and painting. I could do them all, but they left me stressed and produced no joy. For years I had no creative outlet. Finding one little thing that I can do just for me has made such a powerful impact. I don't have the luxury of a lot of time without little ones to look after, so finding something that includes them has been perfect.

Plus being able to look back at their little faces - joy to the thousandth degree.

Of course I believe in moderation and sometimes life just sucks. There are times when you just need to hide and wait for it to pass. I believe that if you focus on the joy in your life and actively search out things that make you happy, it can only help.

Here are a few moments that bring joy to me. May you find something today that brings you joy.

school

A new school year has started. Just like with everything else in life, I totally misjudged how the change would affect each child.

My buddy worked so hard all summer - between home school and summer school that he has had his best transition yet. Sure, there's been some testing of new people in his life. I had to send in the book I made so the teacher could read it to his classmates. It talks about my buddy and Down syndrome and why he is the way he is. I guess he knocked down some block towers that the kids were building and they were understandably upset.





Big sis, however, spent many nights in tears. Her teacher last year had a personality that really meshed with big sis plus her two BFFs were in that class. This year is really different. Big sis is slow to warm up and has been keeping it together at school then completely losing it at home. It's been really hard on all of us. Hard enough that I took a book out of the library about highly sensitive children.

I volunteered to be room mom (which big sis loves) and now I'm the official class photographer (which I love). My first official business was a head shot of all the kids. They all look a little like this:





I know that big sis will adjust soon enough, it's just so hard to see your kids upset.

Rara, on the other hand, LOVES school and wishes she could go more than twice a week. She is equally happy at home with just me and some peace and quiet. The fighting this summer was so out of control, I think everyone is happy to have a little space. Watching rara so excited when she gets to be a big kid then just running into school is the best. (And yay for a teenie bit of me time)

the other day

The other day I shouted and every little thing made me mad. The other day I made excuses for why I was being so mean. The other day I went to bed hating how I behaved. I worried all night that you would remember the worst part of me and forget the best part of me.

Today I want to talk to you about being human and feeling all these feelings. How some days it's hard not to act like a jerk. How you can see yourself acting like a jerk and not be able to stop. I want to talk about emotions and how difficult they can be to control.

But I don't have the answers. In fact, I may change my mind tomorrow. Being a human is complicated. Trying to figure out how to be your best while raising little humans to be their best is extra challenging. 

Today I will work on my nice skills. Talking to you the way I wish you would talk to me. Listening a little closer. Finding things to make me smile. Doing my best to erase the other day. Because part of being human is to forgive. While I'm sure you've already forgiven me, I still need to forgive myself.

None of us are perfect and some days we're not even on the same page. But we are in this crazy life together.

hello again

I unintentionally stopped writing this summer. It was a bit of a challenging summer with an insane amount of fighting between all the kids. I home schooled my buddy almost every day. We made attempt number two at potty training and are back in pull-ups - so that's how that went. There was a week of summer camp and then summer school. Every day seemed so long, but it all went by relatively quickly.

Here are a few of the highlights of summer and hopefully I will be back to writing soon.


tushies in bathing suits




sun dresses (and the Special Olympics medal she wears all the time)



rock throwing



inflatable pool in the backyard



mismatched outfits and favorite dolls



adventures with the whole family




convincing the hubby to take some pictures together (even if I don't love any of them)

no glasses!!!!! (the highlight of the summer for sure)



rare photo of her smiling (and not scowling at me)

summer not-so-fun

Sometimes I feel like having a kid with special needs robs you of super summer fun. If I had my choice, we'd be lounging in our PJ's until we felt like getting dressed. Pulling every toy we own into the middle of the living room. Spending the morning at a park or finding some water to splash in. Planning a big weekly adventure like the beach or the zoo. Hanging about and exploring new outdoor places. Finding the perfect spot to throw rocks into the water and visiting often.




Instead I find myself driving back and forth to camp - to work on social skills and following directions. Teaching my buddy home school to keep him in the groove. Making him practice writing and reading. Using the same pecs cards they use in school and reinforcing the 'first then' board. Getting moving four days a week so he can be to summer school on time.



All these things that I have to do just so my buddy won't regress and have such a hard time transitioning back to school in August. And yet it never seems like enough. There are too many things that he needs to improve. So many more ways I could push him. There is a fine line of encouraging him to be his very best... and just letting him be. I'm more of a let it be girl.



So I will take those 4 half days and 3 full days and cram as much summer fun in as possible. Stay in our jammies on some days and have grand adventures on others. Rest assured there will be plenty of bubbles to pop in your sister's face, chalk to cover the ground and searches for the perfect place to play in the water.




More good news... she finally conquered her fear of the sprinkler. As long as this is as high as it goes.