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.

come so far

Since I've been down on my buddy's behavior lately, I thought I'd take a walk down memory lane and focus on just how far he's come.




When my buddy was little, he was allowed in the kitchen. I emptied a drawer and filled it with toys. He would toss the toys out of the drawer and use it to climb. As he became a menace in the kitchen, he was no longer allowed in. Even after he was gated out, he used to throw every toy he could get his hands on over the gate and right into the cat's water. When we moved into this house a year and a half ago, I was worried about the open kitchen. I took the Potentially Deadly Weapons (vegetable peeler, rolling pin, pastry cutter, etc) and put them all a drawer with thoughts that I could somehow lock it if I needed. So far I haven't needed to lock it.




Starting when my buddy was 2 years old, I had to put all the kitchen table chairs in a corner and push the table in front of them to stop him from climbing on top of the table and swinging from the light. (yes... he actually did that once) All the floor lamps, coffee tables and pictures were put away. You couldn't even have a cup with any liquid on it anywhere within reach. My buddy has outgrown all of that. It is amazing when I think about all the things he would get into. I honestly never thought I would see the end of that era.

When my buddy was 3, he would push or tackle every child smaller than him. Every. Single. One. I had to hover over him whenever we were in public. His favorite were babies. Pretty much every baby he came in contact with ended up crying because of him. Now he's still not 100% safe around babies, but only because he would try to pick them up and hug them a little too tightly.




I've repressed the memory of just how many full plates of food my buddy threw across the room. And how he used to spit out whatever was in his mouth just to take a drink of milk. Meals may not be exactly civilized but they are so much better.

Smart. That boy is smart. I'm sure he wouldn't do great on a test that asked him which number was greater than or less than, but when I tell him he has 2 more minutes to play - he asks for 10. When I tell him he needs to read 3 books to get the iPad - he says, "One." He can dress himself and has made great strides using the potty.




My buddy's maturity level has grown so much. I know that we will get past the not so great place his is now... and find some new hurdle to overcome.

I saw this awesome T-shirt recently. It said, "Some people only dream of meeting their biggest inspirations. I raised mine."

How true.


A few of my favorite pictures of the girls so they don't feel left out.

change

Not so great days can really stink but they seem to lead to positive change. Sometimes I need a kick in the pants to get my Mama Bear in full swing mode. I've decided that if my buddy learns nothing more this year than to identify when he is feeling overwhelmed, ask for a break and never enter full meltdown mode - than we have had a successful year. 

If his one teacher can't seem to understand that my buddy not hating school is more important than AB patterns, she will no longer be his teacher. I have given her more than enough chances to change how she sees him and handles him. 

Things will get better. Now I just need to figure out what I want my buddy to do this summer. It's such a dilemma. I want to push him - but just enough. He does the extended year program that the school has but I think he might need more. There are summer camps that my buddy can attend for a couple of hours with a para, but if he hates it and doesn't participate, then it's not really worth it. Where's that darn crystal ball to see into the future???

I do have some concrete parenting advice. Skip buying toys and just head to Target for paper goods. 

Oh and my other advice - if life gets you down, put on your fanciest dress and dance in the sunlight.

not so great

My buddy has had a series of not so great days at school. Not so great as in emails saying they had to physically restrain him because he was hurting himself and others around him. Not so great as in a call so he can talk to me on the phone and stop crying. Not so great as in when he finally calmed down after one restraint and they brought him his communication book so he could choose what he wanted to do, he pointed to the 'backpack' picture and said, "home."

I'm a nurturer by nature. These stories make me want to pick him up from school and snuggle him in my arms all afternoon. I'm better with a hug than with a "buck up buddy." I know that there have been a lot of changes at school plus the time change. It's all it takes to throw him off. He also sneezed a ton after school which usually indicates that he is getting sick. (Perfect timing because he's actually been healthy for 3 whole days.) Plus the moon is in retrograde and all those other excuses I use.

I don't know why he behaves the way he does. I assume it is extremely frustrating to lack the ability to communicate with those around you. Plus he just wants to do his own thing. Change is not his friend.

I asked one of his teachers today about the search for a new para. She said it was going slow because they are looking for the right person who they think can handle him. Then she said that unfortunately people talk and word has spread that my buddy isn't the easiest to deal with. Now, I appreciate that I am an easy person to talk to and she is being honest with me, but I did not need to hear that coming out of the mouth of a professional that works with my child.

I say at least daily how hard my buddy can be. But I don't want to hear his teacher say it. It's like making fun of your brother - fine when you do it, but as soon as the words come out of someone else's mouth, you beat them up with your Care Bears lunchbox.

Some days I marvel at just how far my buddy has come. There are so many things he can do and a level of maturity that I never thought he would reach. But other days it seems like he still has so far to go.