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.

three

My little rara has turned three. She's taken the leap from toddlerhood into a preschooler. I didn't know what our family was missing until she joined us. Rara is half sweet and half feisty. She NEVER backs down and stands up for herself with ease and confidence. My buddy has been known to lose his mind now and again. Most people back off when that happens. Not rara. She gets right in his face and screams at him, "No! Bad! Boy!"

Rara has a thing for arms. She holds on and rubs your arms like she is a kitten. She loves to nestle her hand in your elbow pit. (Is that even a body part or did I just make that up?) She loves to be close but lacks the ability to sit still. Most of the time it makes me a little bonkers, but I know some day I will miss how she would beg to sit in your lap then just wriggle and squirm until you can't stand it another second.




More than anything, rara loves all dogs. Really anything that has to do with dogs. Or the color red. We must pet every dog we come across. She carries her black stuffed dog all over the place. She gets so excited when anything at all has a dog on it - greeting cards, shirts, even a bag of dog food.





I didn't know that a three year old could have such a strong opinion about things. I also forgot that you could have the most entertaining conversations with a three year old. Rara really is fun to be around. I love the quiet days we have together and how she will chat on and on about anything.




If I had to choose a career based on rara now, I'd go with either veterinarian or daredevil. I hope her spunk never disappears and that it's always covered in a sprinkle of sweetness.

feeling off

Lately big sis has been feeling off. Reacting to little things in a big way. Lots of tears. We've all had a cold, but even though she is feeling better, this mood seems to have clung to her tightly. Big sis feels things deeply. I don't think she cares for change. It takes her so long to feel comfortable and the end of the school year means she will be leaving the classroom that has been her home away from home. Big sis loves her teacher and her confidence has bloomed. She's not able to articulate all these deep emotions, so it comes out in all the little things.




Today I let her have a mental health day. We went to the park, ran an errand and played in the backyard. We colored and played babies. We snuggled on the couch. I know that I cannot change how she is wired but I really hope that I can show her how to take care of herself when she is starting to feel down.





Meanwhile, my buddy has been blowing me out of the water. I always knew he would read. I never expected him to know all of the kindergarten sight words while he was in kindergarten. I always knew he would do math. I never expected him to meet the kindergarten goal of counting to 100 while in kindergarten. I say all the time that my buddy can do anything he wants to... he just usually doesn't want to.





Then there's this little rara. She is just a couple of handful of days away from turning 3. She has mastered potty training. She is hysterical. She is trouble. She doesn't believe in napping but often wakes before the crack of dawn and just can't keep herself awake all day.




Rara loves dogs more than just about anything. Even when they steal the trampoline.




If the dog would stay still, rara would spend all day here. It's her favorite warm cozy place to be.




She refuses to let me pull her hair out of her face. I feel like the world must look like this to her:


On a side note: The adults have gotten the killer cold from the kids. Michael is on the upswing but just the other day while he was travelling, he sneezed while tying his shoe and threw his back out. I *may* have called him old and laughed a bit at his expense. But have no fear. Karma knows what she is doing. I've been sneezing and coughing and spent a good chunk of the night holding my buddy. This morning I woke up with a little pinch around my shoulder blade. Now I'm in full Quasimodo hunch and heading for the heating pad right now. Well played karma.

NYC

I had a milestone birthday this year that was just a couple of weeks before Mother's Day. I wanted to see a Broadway show and I thought it would be fun to bring big sis. The plan changed as we went along - big sis isn't into shows or movies - and we decided on a weekend in New York City. We scoured the internet and made a list of places we wanted to see and off we went to navigate the big city.




I'm a fan of the woods and quietness but big sis loves the hub bub of a city. This was my first time being the one in charge - usually I just blindly follow whoever I am with. It was exciting and big sis turned out to be a perfect travel companion for me. I remember the trips I took with just my mom fondly, so I am excited to pass this tradition down to my girls.



I used to think that traveling with kids was next to impossible. Turns out it's just SOME kids. At the ripe old age of almost 8, big sis is mature enough to handle travel and mixing up the schedule. It was such a luxury to only make loose plans and just do what we wanted when we wanted. Plus I'm just a kid at heart so the park and carousel were right up my alley.





Big sis often gets overlooked because of the more immediate needs of her brother and sister. I know she craves more of my time and sometimes I fear we expect too much of her. Childhood is a time to embrace and I don't want to rush her out of it too soon.

I remember when I was first married and staying in Hotel 8 was a luxury. Now with my husband travelling so much, he knows a nice hotel when he sees one. The view from our window was breathtaking. We were just above Ground Zero so it was the perfect opportunity to talk to big sis about that important day and we had a chance to visit the memorial.







We spent all weekend walking hand in hand. I didn't even take that many pictures. She was such a trooper although I did spend some time giving her piggy back rides. The weekend flew by yet it felt like we had been gone forever. I feel so lucky. My husband works hard so I get to stay home with the kids and take a weekend adventure with my big girl. I know that for years she will be saying, "remember when we were in New York..."

you are loved

I had forgotten how fun it could be to see little minds emerge. I'm so used to my buddy's ability to only communicate his immediate wants and needs. I know he has funny little tidbits to say but just doesn't have the words.

Rara, on the other hand, will talk your ear off. She comes up with the funniest things and has ideas that are all her own. The other day she was naming all the people who love her.

"Daddy loves me. Mommy loves me. Big sis loves me. My buddy doesn't love me. He just yells at me."

Oh the heartbreak.

So we had a conversation about Down syndrome, not being able to talk, getting upset and having no words, boys and their rough ways and how wrestling can be a display of affection. I assured her that my buddy does indeed love her. It was quick and aimed at her level.

Today she listed the people who love her again. This time saying, "My buddy loves me. He just gets frustrated."

I can understand how you would think that someone who is constantly dumping water on your head and doing all sorts of unpredictable things to you might not love you that much. I know that as she grows, she will understand him better and know that when he tackles you, licks the side of your face and laughs hysterically that you are deeply loved.

behavior

I recently attended a workshop on challenging behaviors. While I didn't find the golden key to unlock that one magical answer, I did find some fairly universal truths for all challenging behaviors. I went with my buddy specifically in mind (because he has the most challenging behaviors) but the points that stuck with me really work for all my kids.

Behavior is a way of communication. All challenging behaviors have a function and purpose from the child's perspective. Challenging behaviors result from unmet needs. We all have behavior that other's might think is insane, but they work for us. That is why we continue to do them. And we all know that changing your own behavior is a really hard thing to do. I'm working on listening from my heart and really trying to hear what my kids are telling me.

Having a voice is so important. My buddy lacks a voice that comes quickly and easily therefore his challenging behaviors are more extreme. I need to hear what his actions are telling me and then try to teach him to engage in a behavior that will serve the same function but in a more acceptable manner.



One point the presenter made really hit home for me. She said that instead of doing things to the person or for the person we should be doing it with the person.

I am so guilty of this. Sometimes it's easier for me to just do everything myself. It takes time and patience to let little people help. My buddy loves letting others do the hard work. I can now see how this could really limit him later in life. I want him to be independent.




Each person is capable of learning. You have to assume competence and have high expectations. Don't close doors that don't need to be closed yet. My buddy might never drive a car. But then again, he might. There is no need for me to close that door when he is only 6. I have learned in the past 6 years that there will be great disappointments when he can't do something but there are also amazing moments where he blows my expectations out of the water.





Another point the presenter made that resonated in me was when she talked about how easy it is to stop going places and how quickly and easily our child's world can shrink. When we go somewhere and challenging behaviors arise, it can be frustrating and embarrassing. It can take a LOT of extra effort just to complete a simple errand. It's so easy just to never bring your child out. I don't want that. I want my kids to experience a wide variety of places and people.

Now it's up to me to really listen to what the behavior is telling me and come up with ways to answer their needs by changing how we do things. Then keep trying. Eventually we will have many successful outings with minimal challenging behaviors. If I keep my buddy away from the grocery store because he runs off and throws food out of the cart, he will never learn how to navigate the grocery store. And let's face it, the grocery store is a big part of life. So maybe for now, he only comes when we have a few items to get and he gets to actively participate - stopping the boredom and creating the fun next to me so he won't want to run off.

It's not easy. I don't think it will ever be easy. But I am confident that I can do better. I want all my kids to fly.

April break

We had an amazing April break. I was dreading it. It can be really difficult managing three kids on my own when we go out... and staying home all day makes us crazy. I tested the waters with a little children's museum. It went well. We visited a new park with no incidents. We even had to leave the playground to walk down a little hill to get to the swings, explored a bridge and went back to the playground.





My buddy was a rock star all week. I've been learning as well. He needs a lot of reminding when a transition is about to happen. He needs to be able to have a little say in the matter - for example I let him choose the last thing he wants to do before we leave. Before he does whatever the last activity is, I tell him straightforward what will happen next, trying hard not to be too wordy. "First you slide. Then we walk to the car."

There was one time where I pushed too hard and he melted down. I wish I could go back and handle it differently.

The girls had haircuts. I told my buddy over and over that it was just for big sis and rara. He just had to watch. Normally he wouldn't have even walked into the hairdressers. He explored around for a while and sat and played the iPad while I hung out with the ladies. Then we played hairdresser (aka stick every sticker we got at the hairdresser all over your baby).





Then I started to get all sorts of confident in my abilities and we headed to an even bigger park that had animals to pet and a pond and playground and grassy areas and a picnic area. I even packed a lunch and we made a whole day of it. We wandered from one activity to the next all staying together. I wasn't stressed out in the least. I even managed to pull out my big camera and take some fun pictures.






The only way to really celebrate such a great week was with some ice cream.




PS. Not to worry. There were still plenty of antics. Like ice cream in your little sister's hair and a carrot up your nose. Perhaps a half eaten bowl of Cheerios went flying across the table covering the wall, chair and floor with a milky mess. Toys were thrown. Tantrums were thrown. Research was done on vehicles with 3 rows of seats because the physical abuse in the backseat is at an all time high. But those are all typical behaviors of three rambunctious kids. I'll take it.