funk

I'm in a bit of a funk, as I like to call it. I think it's a combination of too many funerals, not enough photography and writing, and the general exhaustion that comes with being a parent. I'm sure I could use more laughs with friends and less worry about my buddy's behavior in school. I don't often fall into the comparison hole, but lately it seems like everyone else has more friends, is thinner, takes better pictures, has more fun, etc. The reality is that we are all human and we are all hot messes. I know better than anyone that a picture may say 1,000 words... but they all might be misleading.

Take this one for example:




I could write something poignant about sadness but the reality is that he was all congested so his eyes were watering.

I am lucky that my funks don't ever turn into depression. Plus I have these crazy kids to entertain me and bring my spirit up.  So I will force myself to find things that I enjoy and throw myself into them. What do you do to break out of a funk?

Here's a small selection of moments that bring joy.

personality

My self portrait topic this week was Childhood Me. As I started thinking about what I was like as a child, I realized that I'm the same way as an adult. I had my dad build a little ladder and seat into a tree in our front yard. I used to sit up there with a book and watch the neighbors mill about. I still love trees and books and solitude (while being close enough to others as to not feel lonely).




I think parenthood is the perfect way to study personalities. Kids are their own distinct people. Their personality comes across at a very early age. Looking at pictures, it's so obvious to see who they are. Of course, I don't photograph the hard times - I'm in there elbow deep. And there is a lot of personal growth in the hard times but I like to focus on the every day.

Big sis was mothering before she could even walk. She shies away from the camera and takes a while to warm up to people. She is loyal and kind.




When my buddy is doing his own thing, he is in it 100%. He loves an audience and wants you to share in the fun with him. He wants to run with you, but only if he is in the lead.





Little rara has a big personality. She stands up for herself and all that she believes in (usually by shouting at her big brother and shoving him in the face). She is silly. She is sweet. She is sociable and outgoing.

that kid can't even talk

The other day we were at the park and my buddy was in the sandbox headed for a truck when another boy swooped in a grabbed it. My buddy shouted at him for a minute following him around, but then decided to walk away. As I followed my buddy, I heard the boy laugh to his friends and say, "That kid can't even talk!!"




My heart broke a little. I wanted to say something, but even days later, I don't know what the proper response would have been. We were already walking away and I know my buddy didn't hear him. Even if he did, I don't think he would have cared. I can picture him saying, "Dude. I can talk... YOU just can't understand me."

It's amazing how 2 seconds of life can sit in your gut and fester. It almost makes me forget all the kids who actually know him and like him.




Every day when I pick the kids up from school, at least a handful of kids will go out of their way to say hello to my buddy. Once kids understand who he is, they accept him and even learn to understand him.




Last week when the weather was nice, we stayed after school to play on the playground. One afternoon, when it wasn't too crowded, my buddy had two friends at the playground. They were so amazing with him. They did what he wanted them to do, being so patient when he was getting frustrated. They kept on encouraging him to play with them and never once got upset with him. He talked to them and they understood him. It was perfect.

stories

I've been wanting to write lately and I've started a few times, but my thoughts all seem to be just fragments. Like the sadness I feel when I hear people talk about their rowdy, full of life teenage boys and their friends crowded in the kitchen. Or the heartbreak of our little friend who has been in the hospital for three weeks straight battling leukemia. There's always the daily grind of life with my buddy and two girls who can tap into teenage angst in the blink of an eye.




Maybe it's just the winter glums. Or the lack of sleep blues.




So I'll cheer myself up with stories of things that make me smile. My buddy loves YouTube Kids. There is a search bar and he usually taps it and asks me to search for his favorite videos. Lately, I've been telling him which letters to push so he can spell it himself. Wouldn't you know the other day, he independently typed in eggs and found the surprise egg videos he loves! Little victories.




We've been trying hard to get all the kids to try different foods. Believe it or not, my buddy is the best at this. The girls complain and gag and let me know that I am the worst mom ever. But my buddy pops whatever it is right in his mouth. He chews (washes it down with milk fast if he doesn't like it) then says, "Mmmm. Yummy." After I praise him and ask if he wants more since it's so yummy, with perfect comic timing he says, "Nope."




Big sister goes through these phases where I see what life will be like when she is a teenager. Even at her most challenging, she is still so kind to her brother and sister. She lets her brother have a turn on her bike and helps push him. She cuddles rara when she feels sad. It can be hard to remember sometimes, but she really is a fantastic kid.





Most of all, I'm grateful for those days when we are all together making memories and laughing.

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??"