slow summer

My friend's been using the term 'slow summer' and I thought that sounded like a great idea. Now that school is out we don't have to fit in all the fun on the weekends. We can take our time. So often I find myself saying, "hurry up." I'm fairly certain I micromanage so much of the kids days. I need to step back and let them be. So this summer I vow to linger and find low key activities everyone enjoys. Lots of time in the backyard. Small excursions when we need to be out and about. Let the kids get dirty and be kids. Bonus is it gives me time to practice photography!

Slowing down to explore the (overgrown) garden and for me to memorize little faces.




Slowing down to climb and laugh at the park.



We took a walk on the path by the river today. I let the kids linger as long as they wanted - not hurrying them along. They spent 45 minutes throwing and collecting rocks. Shoes were soaked. Faces, hands and knees were covered in dirt. Everyone smiled.








Slow down and enjoy your summer!

perspective

When I do think about Down syndrome, I tend to think how it affects my life. Sometimes I want to bring the kids somewhere or to an after school activity but we can't because my buddy just can't handle it. I wish I could have a conversation with my buddy. I dream about a day when I don't have to constantly redirect and micro manage him.

Then little things happen that shift my perspective and make me think about how my buddy feels. One of the reports from school talked about when the directions became more complicated or the task asked of him was complex, he would become distracted and stop trying to answer the questions. I've seen him do this many times. I had always assumed that he just didn't want to do whatever it was, so he moved on. Their interpretation was that my buddy didn't understand what was asked of him so he shut down. It must be so hard to have people asking you to do something and just not getting it.

Then there is rara. She is 3.5 years younger than him and she is mastering milestones without even trying. My buddy has to work so hard at every little thing. She will pick something up in a week that we have been working on for a year. It makes me appreciate just how hard he has it sometimes.




My buddy always does better one on one. Whenever possible, whether it's grandparents or we split up on the weekends, we try and give him some alone time (and it gives the girls a break to do things on their time line). I had the pleasure of taking my buddy to the library last weekend while the girls enjoyed some Daddy time.





And last but not least. The joys of a boy in a muscle shirt. You're welcome.

two

I cannot believe little rara will be two tomorrow. Rara fits into our family perfectly. She has enough feistiness to help her navigate life with two big siblings yet tons of sweetness to get her out of trouble.




I love watching her language blossom and don't take a single word for granted. After watching what a struggle speech can be, there is such joy when it is effortless. Plus she keeps me entertained. She calls big sis 'teddy' and herself 'mamo'. Rara keeps a running dialogue when we are out. Her favorite is the grocery store where she names the food and determines who likes what. Except her 'l' sounds like 'y' so she ends up with ; "Dada yike bananas. Mamo no yike bananas."




Rara would follow big sis to the ends of the earth. They love playing together and get along amazingly. Rara and my buddy have a funny relationship. They like to argue about everything. One will say, "shoes" and the other will say, "no shoes." Back and forth getting louder and louder all the time. The subject changes daily, but the nature of the argument never does. Yet they always hug and kiss each other goodnight at the end of the day. Rara learns funny expressions from the big kids like "oh man" and "no way" and "no fair". I seriously could watch them interact all day long.





My sweet girl loves to give hugs and kisses and snuggle. She melts my heart with one look. Which comes in handy because she can be quite the dickens. She loves to shout NO then run away. Rara starts a fight with one of the big kids by bopping them on the head. She loves to put shoes on all by herself, but puts them on the wrong feet then gets so mad if you try and tell her it's not right. She is not a fan of frilly clothes - she prefers jeans and a T-shirt with a Disney character on it. She loves her Daddy fiercely and has some killer cute dance moves.




Rara's best friend is the dog. (Don't let the picture fool you - it is not an accurate representation of the dog's energy level.)



I love all the time I get to spend with her. She is good company. There is a pretty even mix of self entertainment, kisses and neediness. It is such a fun age and I'm doing my best to enjoy and remember all the little details and just how cute they are at this age.

I may be a bit biased, but I think this is the cutest video ever. It is called, "jumping rope in bathing suit and pig tails".

040 from Elena Pendell on Vimeo.

reports

Tomorrow is my buddy's PPT and Annual Review. He'll be 6 in October so per state guidelines, he needs to be classified in order to continue to receive special education. They've been testing him and I've been reading the testing results. I understand why it needs to be done and I am grateful that his results allow him to continue to receive the support he needs at school. At the same time, I have to read over and over about all the things my buddy can't do and what age level he performs at.

I am well aware of my buddy's limitations. There are moments every day when I am faced with things he can't do or handle. But for the most part, I don't focus on that. We celebrate his accomplishments - like how he is learning to read. Unfortunately, as his mom, I strive to make him happy and healthy - not always pushing him as hard as I probably should.

Some days I wish for a crystal ball that could tell me where to push and where to back off. My buddy still mostly parallel plays with his peers. He engages his sisters at home but only for short periods of time. I'm not super social and haven't made any new friends since we've moved. Have I held his socialization back? Do I adapt my behavior to suit him more than I should?

I am no stranger to reading reports and having discussions about my buddy's current level of intellect or physical ability. It hasn't gotten any easier. It always stings for a few days, then life goes back to normal.

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We had a fun weekend. The kids played with a home made race track, splashed in some water and were spoiled by their great grandparents.

public

I love instagram. I love looking at pictures. I love posting pictures. It's nothing but fun. Until today. When I first signed up, I went back and forth on keeping my account private versus public. I had it private for a while then I wanted to join a photo challenge and made it public so I could participate. I use only my first name, no geotagging, no kids names and I rarely hashtag anything. I've found it to be a lovely community - especially in the photo challenges.

Today I posted this picture of my buddy.

I sometimes hashtag pictures of my buddy with Down syndrome. People who love someone with Ds tend to love looking at other kids with Ds. I know I do. So many adorable faces.  

Today a teenage boy commented on the picture by @ then two of his friends so they would look at the picture. The teenage friends each made a comment that wasn't horrific but certainly wasn't nice. I deleted the comments then blocked them from ever seeing another picture I posted. I then scrolled through #downsyndrome and noticed that they did it on several other pictures as well. If there was some way to tweak their ear while giving them a stern talking to, I totally would have. 

The internet seems to be all about weak people making themselves feel tough by being mean to innocent people. Because of 3 mean spirited teen boys, I contemplated making my account private again and no longer sharing my buddy with everyone. 

But I want my buddy's face out there. I want people to see him and have Down syndrome be a normal part of life. I want the stigma gone. I want doctors to congratulate new parents when their baby has Down syndrome. I don't want to hide him because of what others may think. I want to change what others think. 

The song "Baby Mine" from Dumbo makes me think of my buddy. 

If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for

The right to hold you
From your head to your toes
You're so sweet, goodness knows
You are so precious to me
Sweet as can be, baby of mine

Everyone should be so lucky as to have that kind of love in their life.