holiday

The holidays are so much fun yet so stressful at the same time. The kids love all the traditions - getting the tree, decorating it, seeing Santa and driving around looking at Christmas lights. They all really love to give gifts. My buddy's favorite time of the year is when he walks all around school handing out his holiday thank you cards and gifts.



The stress of the holidays is not to be denied. For my buddy, the most stressful thing is the big family holiday party. I try and talk about the good and the bad parts of raising a child with special needs with extra stress on the good. I don't like admitting there are things that my buddy just can't handle but big gatherings are so hard for him.




This year, despite the hurt feelings it will cause, we decided to do what is best for our family and skip the big party. My job is to make sure my family is safe and happy. Even big sis ends up with a tummy ache every time we go to a big gathering... the curse of an introvert. I wish things could be different. Usually it's just our immediate family that has to live our life based on what my buddy can handle. It's hard as a mom who is desperately trying to change how the world sees my son, to have to spell out his shortcomings and ask point blank to have his needs taken into consideration.



This year we start new traditions and selfishly do what makes our family happy. This is our one life and we are choosing us.

look

I've often said how grateful I am that my buddy has a disability that is right there in his DNA. We don't have to prove anything in order to get the services he needs and people can look at him and not expect him to be like every other kid.




It makes some things easier - like when a couple of kids build a huge tower out of foam blocks and my buddy body slams it before I can stop him - the dad isn't mad. Of course my buddy has to apologize and see if they want help fixing what he ruined. The kids are still pissed but the dad can see my buddy's disability all over his face and I am relieved not to have him be angry with me.

Or when my buddy goes right up to the two skateboarding dudes and stands right between them. They can't understand anything he says, but they are so patient with him.





It also makes some things harder. The lower expectations make it harder to live up to your potential. I want my buddy to be a shining example of what a child with Down syndrome can be when we are out. I want people to see how funny he is and how loved. My buddy is rarely at his best in public. More often than not, he is growling at me or shouting 'NO'.



Then I get 'the look'. Man how I hate that look. Sometimes it's pity. Other times relief that he's not their kid. It's the one time I am grateful I can't read people's minds. I know I can't make everyone fall in love with my buddy and I can't single handedly change how everyone perceives people with Down syndrome. I just hope that somewhere along the way, my buddy can win over a heart or two.

Halloween

Sometimes after my buddy has a birthday, I get caught up in the cycle of all the things I thought he would be doing at this age. Like how my 8 year old is still mostly unintelligible to strangers. Or how he still pulls his CPAP mask off 4 times a night forcing me to wake up and put it back on him so neither of us is sleeping through the night. And nothing gets me more depressed than every single time I change his pull-up. I also flash back to all the time he spent in the hospital when he was born.



Halloween always seems to turn things around. For one, that is the day he came home from the hospital. Plus Halloween is fun! This year, I celebrate the positive milestones. For the first time ever, my buddy told me what he wanted his costume to be and had an opinion when we picked it out. He also anticipated the big night - asking to put on his costume, or go in the car, or simply say, "Halloween please?" He LOVED trick or treating. My buddy was perfectly age appropriate - trick or treating like a pro. He always just took one candy and said Thank You every time. He wasn't scared of the decorations or costumes. He seriously loved the entire evening.





My buddy is also having a good school year. He is maturing and they are reaping the rewards at school... not that he is perfectly behaved or anything. One thing that I've seen this year that has never happened before is work has come home marked with '100% independent'. This is a HUGE milestone. My buddy is listening to instructions, focusing on what his task is, following the directions and actually doing all the work - reading the question and circling the right answer. I don't care what level the work is. He is actually doing it. I couldn't be more proud of him.




My last story really shows his maturation. The kids love to use my keys to unlock the door when we come home. One day after school, I was the last one into the mudroom and I heard my buddy ask for the keys so I handed them to him. Rara started crying saying how she asked first. I told her I was sorry and I didn't hear her. She still cried. Normally at this time my buddy would shout at rara and say, "No crying!! Go to your room!!" But this day, he walked over to her, handed her the keys and said, "OK rara?" I almost fell over in shock. It was the single kindest selfless act I've ever seen him do. I praised him so much and gave him ALL the attention.

I think 8 is going to be a good year.

love

This school year has been hard for big sis. I hesitate to tell her story now that she is getting bigger, so I'm not going to say too much. Only that the transition to a new school has been a challenge. It's hard for 9 year olds to express their feelings, but one thing that big sis has said is that she misses being at the same school with my buddy.

When you are my buddy and school is extremely hard work, you get some special treatment - like sensory breaks, motor breaks, 'jobs', etc. All these things gets you out of sitting in a classroom for long periods of time. During my buddy's wanderings about school, he often ran into big sis typically greeting her with a big hug. Sometimes she walked with him. Sometimes she helped encourage him to do what he was supposed to. Sometimes they just shared a hug and went on their way.

Big sis, up until this year, has been at the same school as my buddy. He was in PreK when she started Kindergarten. He is her security blanket. He helps her feel brave.

To the casual observer, watching big sis take time out of her recess to walk my buddy into school may seem unfair. It also seems unfair to leave a fun activity just because my buddy has had enough. The list of things that are unfair is long.

What big sis knows, that the casual observer doesn't, is the depth of his love. There are no words to describe how it feels. My buddy doesn't hold back when expressing himself. He is all in. Sometimes he's expressing dislike which can be hard to deal with. But when he snuggles in tight and murmurs your name, there is nothing like it. My buddy and big sis love each other more than any one else. Big sis sees it as a privilege to help him when he needs it. She gets paid in love.

trust

I unintentionally took a break from writing. I just couldn't find the time. I had nothing to say. I was chin deep in mothering and adulting. At the end of the day, all I had left was just enough energy to sit in my favorite corner of the couch watching shows I'd seen before. But then I had this dream.

This dream was weeks ago and it still haunts me. In my dream, the 'experts' had decided that my buddy would benefit from a three week intervention. They would take him for three weeks and fix all his behaviors they didn't like. Every fiber of my being thought this was a bad idea, but everyone kept telling me that I was being too overprotective and I needed to let him go. So I was packing his bag and just weeping. I kept thinking of all the ways they wouldn't love him the way I do and how scared he would be. Then I woke up. (or most likely a small human woke me up)

I can't stop thinking about all the experts in the past that told moms that their child with Down syndrome would never grow up to be anything and told them to put their children in institutions. I can't stop thinking about the millions of ways we have to trust what others tell us. Trust others to care for our children at school, playing a sport or as a babysitter. Trust that doctors know what they are doing. Trust that the medicine we chose is the right one. The list goes on and on but I'm already starting to sweat.

The urge to keep my kids by my side 24 hours a day is strong. I know that my job is to help them find their way into adulthood and extensively sheltering them will do more harm then good. I know that school has so many benefits for all of them. I choose my battles. There is only one problem - how do I know I made the right choice??

I spent a fair amount of time this summer trying to change how I respond to my buddy. I accept who he is and I've learned more about how he works, so in changing MY response I am hoping to increase the number of positive behaviors he shows. It's not easy to change.

All this trust and change. It's so hard. I try to listen to my gut, but sometimes it's very quiet. Every time I blink, time seems to jump and they get bigger and bigger. I hope that a good balance of hard work, laughter and hugs will do the trick.

unknown

When my buddy was first born, I joined facebook and read every blog I could find because I wanted to know what life would really be like. I didn't know much about Down syndrome and I didn't actually know any people who had Ds. I was scared of the unknown. I learned about the medical side of things from pamphlets and doctors. I craved to hear what moms had to say. I couldn't imagine this life and I just wanted to know what to expect.



There were two bits of information that I learned that I had never considered and I harped on in my mind. One was about potty training and the other was about speech. When I first stumbled across information that some 5 year olds weren't potty trained and wore diapers to kindergarten... it rocked my world. I have no idea why this hit me so hard. Then I heard about kids who were nonverbal. This word wasn't even part of my vocabulary. I remember whispering into my buddy's baby ear, "please just talk some day."





Fast forward 7 years and I have a son who is not potty trained and is mostly nonverbal. And you know what? It's not a big deal at all. The potty training business is just part of life and I only notice it when I have to change his nervous poop standing up in the dentist's tiny bathroom or have to cancel the afternoon at the pool because he's had some loose poops and I don't want to be responsible for the 'code brown'.




While my buddy can name objects, say hello to friends, ask for food and get his basic point across he is very hard to understand and often can't answer simple questions. He can't tell me how his day was. He can't tell me if someone was nice to him or mean to him. He can't tell me his favorite anything. Even with all those verbal limitations, my buddy is hysterical. No one makes his sisters laugh more than him. And when he does say something unexpected, it's that much sweeter.





I don't know why I had those fears. Probably just because they were unknowns. I couldn't imagine what it would feel like or look like. While life with my buddy will never be described as easy, it is full of joy, laughter, love, acceptance and happiness... and that is worth a thousand easys.

friends

We're already 2 weeks into summer. I promised myself I would be on top of home schooling with my buddy, but I've yet to start. We've spent tons of time swimming. I have enforced the no iPad during the day rule and that has led to lots of playing together. I am amazed at how well my buddy and rara have been playing.




My buddy will say, "Rara play?" She always responds, "Yes. But you have to remember that I am little and you need to be gentle with me." It's super cute. Rara has gotten a little better at getting out of his way when he starts to get upset, but she's still stands her ground often... and often ends up getting hurt.





It warms my heart to watch them becoming friends. It took 4 years, but they're starting to build a solid relationship. They make each other laugh. I can let them play alone in his room without fear. I wasn't sure this day would ever come. I am enjoying it as much as they are.

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.