light bulb

This week I brought my buddy to a Down syndrome clinic and we talked with a geneticist. She said something that really stuck with me. (I am paraphrasing and I'm sure not very well) I had an endless stream of questions about different behaviors. The doctor told me that changes in the 21st chromosome present themselves in the brain. This is why individuals with Down syndrome have cognitive delay. She continued on to say that there are a lot of other ways it can affect the brain like OCD, impulsivity, depression, stubbornness and spectrum disorders.





It was like a light bulb went off in my head. I've always understood that my buddy would have cognitive delays. While I encourage him to learn as much as possible, I never felt a pressure to do everything in my power to raise his IQ to genius levels. I accepted that about him from the beginning.





Yet all these years later I am still trying (unsuccessfully) to alter his behavior. I fight against the impulsiveness and try and cajole the stubbornness out of him. I have felt the heavy weight of guilt over failing to get him to 'behave properly' in public. I have been holding my buddy up to a standard that he just can't attain. I need to truly accept this about him and stop seeing his behavior as my lack of success as a mom.





I will never stop encouraging my buddy to be the best he can be. I just need to acknowledge that my preconceived idea of best may not be realistic for him. And there is nothing wrong with that. He is who he is.

lower the bar

Shortly after my buddy was born, I stopped all the parenting magazines. I just couldn't take the pressure to be a perfect parent when my child would never measure up to their idea of perfection. Once in a while, I'll be in a waiting room and I will flip through one. I can't help but feel like they make parenting so much harder then it has to be.

'Turn your afternoon walk into a nature scavenger hunt!' For me, just surviving a walk outside with the kids feels like I should be awarded a gold medal. Let's lower the bar a bit. No food that looks like amazing works of art. More than one food group on the plate? You just won at parenting in my book.





If creating elaborate crafts makes you happy, then by all means craft away. I refuse to feel guilty shoving some broken crayons and scraps of paper at the kids and calling it a day. I say we should all ditch the Mommy Guilt.

Go out there and be the best you that you can at that moment. Maybe you are having a kick ass take no names kind of a day. Yay for you! Maybe it's more of a hide under the covers day. Own it. Give yourself a break.




I was starting to worry that I did not do a single thing with my buddy this break that will help him transition back to school. I will not fall down that rabbit hole. It was a break for us all. No guilt involved. We laughed and made memories. (and fine ... we played a lot of iPad games)




Please, join me in lowering the bar and getting real about this parenting stuff. It's not a competition. So open that closet that is a huge disaster. Grab a cup of tea (or a glass of wine) and watch the kids fall in love with every piece of junk in there. Entertainment with minimal effort!

Oh and for the love of peaches, don't dress your kids if you don't have to. Just let them throw a dress-up dress over their jammies and marvel at their creativity.

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.