Acceptance? Awareness? Experience.

It's October again and that means it is Down Syndrome Awareness Month! ...But... I don't really like the awareness part there. I think maybe I would prefer it be called acceptance month? I suppose people need to be more aware of those who have Down syndrome to understand how similar we all really are. Then perhaps they can accept them as peers. But when people are raising awareness for a cause I feel like it is usually because there is a problem that needs to be addressed. Something is wrong, people are dying, something needs funding, and research, and help! Down syndrome is not a problem. People who are unable to see those with Down syndrome as equals are the only problem. But how do we make them see that when we are raising awareness? Making ourselves appear to be broken and in need of assistance.

This past Saturday we walked in the South Puget Sound Up with Down Syndrome's Buddy Walk. It was GREAT! It was so much better than it was last year, but my favorite part was the giant groups of highschoolers they had out there helping out. For one it meant I was relived of my face painting duties so I actually got to have fun and experience all the festivities myself, which I had been worried I would miss out on. While prizes were being given out and speeches were being made, a group of football players sat over on a curb. Arden was getting wiggly so I set him down and he immediately ran over to them and started waving his arms in the air and yelling at them, as he does, and these teenage boys who you know usually probably only think about themselves. And girls. And themselves with girls, and I suppose football, well, they all turned to mush over this little boy in their faces getting high fives and yelling at them excitedly for no apparent reason.

 

Photos by : Jason Zimmer

That is how we teach acceptance!


It made me think of a newspaper clipping my Aunt sent me a while ago about an elementary school where she lives in D.C. with a program, Roots of Empathy.  By bringing a baby into the classroom regularly for the children to interact with the children witnessed the babies different moods, smiles as well as tears, making the students aware of the babies different emotions. It was a start to being able to understand and empathize. Experience will teach them to be patient and considerate of others. I thought that was AWESOME! This is how we learn acceptance too!  It made me want to set something up with the boys school where I could bring Arden in to play with some classes because you really do need to experience Down syndrome.

When I drop the big boys off at school in the mornings I walk into the building with them and stand against the wall of the gym. They sit in their respective lines behind a cone with their teacher's name on it. Ephraim still wont let me just drop them off and leave. I have to wait until the bell rings and the teachers comes to collect their class. Then I have to wave and blow kisses back and forth with Ephraim until he is out of sight. But until the teachers come out Arden does his own thing. I let Arden loose in a gym full of children grades K-5. He runs around from class to class interacting with the children. Earlier this week he ran up to a little girl in one of the kindergarten classes. She was sitting at the front of the line quietly, not talking with friends behind her in line or anything. Just facing the front a somber expression on her face as she stared down at the floor. When Arden ran over to her I was a little worried his presence was not going to be appreciated. Maybe she needed to be alone. Just as I had decided to intervene the little girl looked up at him. He leaned over closer so they were face to face, just a few inches between. He furrowed his brow as looked at her like he was trying to see why she looked so sad. Her face softened as she looked into his eyes and she then just reached out and hugged him. He hugged her back. It was just a quick hug, three seconds tops, and then he continued on to other students, waving in faces and stealing lunch boxes, but that little girl continued to look more relaxed than she had before his hug. It was then I realised what I had already been doing by letting him run wild through the gyms in the morning. They were experiencing Down syndrome. I was exposing the future to it before they have time to see it as anything else. They will know Arden as compassionate and loving, and silly, and sweet, before they learn anything about that one extra chromosome that makes him so very different in the eyes of others. I stopped worrying that the teachers might not like it that I let Arden run around free when the children should be sitting quietly in their lines waiting to be collected. What Arden is doing is much more important. He is showing the world that he is not broken. He does not need help, or funding, or research. He is Arden and he is awesome.

Happy Down Syndrome.... uuuuh.... something Month! Go love someone with Down Syndrome, and then keep doing it all year round.

Baby Hulk ~ Toddler Group

     Arden was too excited about starting his first day of toddler group today. After 2 failed signs I finally spelled everything right and managed to get it to all fit on the third piece of construction paper. And then he wouldn't let me take pictures!

No time to hold signs! Lets go!

     We arrived at the church where Toddler Group is held. We were the first ones there and the office ladies didn't seem to know what was happening. As the office lady was about to take me back to the class I reminded her I was pretty sure I was suppose to sign in. I wonder if my being 5 minutes early threw her off because there was indeed a sign-in sheet right there on her desk and I had been told ahead of time I would need to sign in. I signed us in and she walked us down the hall where we ran into Teacher Barb! She greeted us, made us name tags, and showed me a cubby to put my bag in. Then we played in the classroom as the other toddlers showed up with their moms, and one "nana".
     Arden was the only toddler with Down syndrome in the group. I have to say I was a little disappointed. I would really like to be able to get to know some other kids his age with Down syndrome, but the local Up With Down Syndrome group is run by an older couple whose kids are all adults now so I just don't think they even think about how important that might be to others. There was one little boy who will be 3 soon, but I think everyone else was closer to Arden's age, though I am pretty sure he was still the youngest. There were 2 sets of twins out of 7 kids in the class! I wondered if they were just preemies and needed a little extra help. One of the sets of twins I had actually met before in my babywearing group! I am pretty sure the little girl has spina bifida. I thought I saw a scar on her lower back at one of the babywearing meetings, and she uses a walker and has leg braces. She also has the best little chuckle ever. Her twin brother is the sweetest little boy I think I have ever met. He just walked right up to me and wrapped his arms around my legs and laid his head on me while I was just standing there not even paying him any attention! The other set of twins will be 2 in a couple of weeks so I believe they were the closest in age to Arden. Their names were Jane and John and I couldn't help but giggle to myself and wonder if their last name was Doe. Arden played with the Doe's the most and really seemed to like their momma. She was fun and young and actually interacting and playing with all the kids not just her own.
     We played around the room for about 15 minutes and then Teacher Barb rang a bell. We cleaned up our toys and then all came to the middle of the floor and sat in a circle around a hula hoop. We sang songs and learned signs for parts of the songs. Then we played with a koosh ball in a toy frying pan. After that it was snack time. The kids all sat down at a crescent shaped table washed hands and passed out bowls and spoons. Teacher Barb sat across from them at the center of the table and dropped little dollops of apple sauce in their bowls as they ate and passed out pieces of graham crackers. Then she passed out cups and poured in about a tablespoon of water as they finished up eating. Jane Doe kept pouring her water into Arden's cup secretly and then asking for more. Only Arden and I seemed to be onto her sneaky ways.
     After snack we all went out into the hallways where there was a line of trikes against the wall. The children were all supposed to pick out a trike and ride down to the gym but in the chaos Arden ran ahead and followed Teacher Barb's helper with the basket of balls instead. Arden loved the big gym. It echoed and he ran around yelling the whole time he played enjoying the sound it made.

     Finally it was time to go back to the class. It was sand table time. Arden was the only one there who just couldn't refrain from throwing sand and dumping it on the floor so Teacher Barb stood behind him to encourage the not so messy kind of sand play for the remainder of the time. 

       Then it was time to go! We gathered around the hula hoop one more time and sang goodbye to everyone.

"Goodbye, Arden. Goodbye, Arden. Goodbye, Arden. It's time for you to go."

     It was a 2 hour class full of fun an excitement and Arden was totally exhausted by the time we got to the car. He was passed out before we were even halfway home and took a nice 2 hour nap.

     I am pretty excited to have this become part of our week! He had a blast and I had a pretty fun time watching him get to play with other kids his age. It has been hard filling the time when his big brothers are at school. I can only read him so many books and I'm no good at the crazy wrestling play he does with his brothers. This is one day a week I wont have to worry about boring him to death.

No more PT?

Yay! BACK TO SCHOOL!!!!!! The first day was Sept 3rd and I was sooooo ready for it! I still managed to get all emotional walking Ephraim up to the school for his first day of kindergarten. My nose got all itchy and everything (that's how we heartless people cry in case you didn't know)! But summer break is just WAY too long! We were all ready for a break from each other. Before we headed out to school  I took all the first day of school pictures of the big brothers. 

 Arden snuck into Nolan's shot looking like Chucky...

...So I was more than happy to oblige when Russell asked me to take pictures of Arden for his first day back to Physical Therapy today! Made him a sign and everything! He was pretty excited to get his own sign and knew exactly what he was supposed to do with it.

As we waited to check in for PT we ran into another mom with a 2 1/2 year old little boy with Down syndrome. He wasn't yet walking. I felt guilty telling her when she asked, that Arden wouldn't be two until November as he was excitedly running down the hall to go find his beloved room of fun. Ms. Annie was amazed by his progress and how strong he is. After she bragged about him to all the other therapists as they passed by, she told us she didn't need to see us anymore! Just a quick visit every couple of months so we can see how he is progressing! What!? I mean I know he is doing awesome and all that, but we love Ms. Annie! We missed our appointments over the summer!
     I guess, in the early intervention program, once they are established in walking they just send them on their way.
     Instead of PT Arden will be starting Toddler Group next Wednesday! Apparently it is kind of like preschool and sounds super fun.  I guess I'll be making a new "first day"sign! This feels more like a real first day of school anyways. I hope he loves it just as much as he loved PT.

I hope everyone had a great summer and hopefully now that I only have one child to entertain during the day I can get back to this blogging business!

Baby Hulk ~ Two Weeks

I wish you could see what I see.

I wish everyone could know Arden like I do. To me he is not a special needs child. He is only as different as his big brother Nolan, who knew his entire alphabet at age 2, is different from Ephraim, who at age 5 still cannot write his whole name (it is a tricky one).

For almost two weeks my sister-in-law visited with her family, and at one point at the beginning of her visit I realised, I think Arden is a special needs baby to her. I don't remember what it was that made me think that, maybe she seemed uncertain or overly cautious, maybe it was nothing at all, but it made me think that she saw that he was different. Suddenly it stuck me. All my friends and family I have, I see often. They have seen Arden and have interacted with him regularly since his birth. They see him the same as I do. He is just a little ball of cuteness with fat little starfish fingers and potato feet. He is our beautiful boy with pretty soft curls. His lovely sometimes grey, sometimes green, mostly brown eyes. He is our sometimes ginger. He is Baby Hulk. We know him and we see him.

I was sad to realise that she probably didn't see what I saw, but of course she didn't. She had only met him once before when he was about 3 months old! This is how the rest of the world who hasn't been lucky enough to interact with him on a regular basis, will see my amazing Baby Hulk.

Luckily we had two weeks. Two weeks for Arden to show a family that he was only as different as anyone else. He doesn't need special treatment. He can play rough and tumble with his cousin and brothers. He is sneaky! He will throw your caramel coloured carbonated sugar water all over the carpet and make you look bad (he actually got my tea today). He is fast and wild and just like any other little boy.

I wish everyone could spend two weeks with him. Two weeks to see what I see.

Two weeks, to see what she saw.

Baby Hulk ~ Test Drive

Just in my last post I said Baby Hulk was his PT's first baby with Down syndrome who hasn't needed orthotics. Well, I spoke too soon because the very next week she brought them up. And then the next week she got out the box and tried some on him. Finally last week she brought out a pair and said she wanted him to try them out to see if they would do anything for him. He works his toes too much. He grips the ground with his little toes for balance and Ms. Annie wanted to see if she could stop that with some orthotics, forcing him to use his core more for balance. We brought them home and then promptly all caught the plague and died. Mr. Grey brought home some horrible stomach virus from school. Everyone was throwing up even poor Baby Hulk. The first time ever and I am sure he had no idea what was going on.

Poor thing :'(

So for almost the whole first week we had the orthotics, they sat in my bag untouched. I was a little unhappy with the whole idea of it anyways because we just bought Baby Hulk a new pair of shoes, and the orthotics didn't fit in them! I was going to have to buy him another pair of shoes just to try these orthotics. We weren't even sure he needed them! Finally, Sunday, 2 days before we saw Ms. Annie again I forced myself to feel well enough to go find a pair of shoes. We went to Target. We needed shoes that didn't have too thick of a sole. That is asking a lot out of boys shoes apparently. All shoes for boys past a size 3 must have 1 inch of sole. I was so mad I went the next aisle over and we tried on some hot pink patent leather mary janes... yup... I put my baby in girl shoes. And then I laughed put them back and left. We did a quick run into the Kohls next door and before I even got to the shoe section Baby Hulk had fallen asleep in my arms, there was nothing there anyways. We went home empty handed.


Monday Baby Hulk had his 15-18mo wellcheck and had to have 3 immunizations, one of them being DTaP. As an adult I have had it and could hardly raise my arm! The rest of the day he was dragging one leg a bit, he wouldn't bend it. I wasn't taking him shoe shopping again while he was limping around.

Tuesday morning a couple hours before PT we ran to another Target and success! A pair of cute cheap shoes that work with these blasted orthotics!

$12.99!!! (Darling Husband says this is how you take shoe pictures.)

He fell asleep on the way home and slept until it was time to go to see Ms. Annie. The orthotics went on and he went straight into his carseat! A week to try them out and this was his first time actually wearing them!

During PT he walked funny in them. His butt stuck out a lot and his feet were far apart, his toes turned in. He looked a bit like a duck. She tried to work with him trying to get him to tuck his butt and move his shins more over his feet but to do this she would grab his thighs. I had to remind her he had just had shots the day before when he cried out and then she felt bad and we pretty much played with bubbles the rest of our time there.

I'm not exactly happy about these orthotics. I hope he doesn't really need them. They are a lot of work to put on him and I have a bad habit of conveniently forgetting to do things I don't like to do. We will see how this week goes. He wore them for about 45 minutes yesterday. I haven't put them on him at all today. It is hard for me! We don't wear shoes in the house. Putting shoes on my baby just to hang around the house may take some getting used to.

So here's to hoping these abominations are unnecessary and we can go back to being awesome, and uninhibited by footwear. FREE THE FEET!!!

Baby Hulk ~ Walking

We decided it was official around a month ago, at about 15.5mo. Baby Hulk is walking. He is the earliest walker either Barb (Early Intervention), or Ms. Annie (PT) have ever seen. I don't know about Ms. Annie but Barb has been working for 28 years. Before Baby Hulk the earliest walker she had walked at 18mo. I am so proud of this dude it is ridiculous, but I feel like I can't really talk about it. I can talk about it with my friends with typical babies but when I bragged about how Baby Hulk was his PT's earliest walker, I think I made another mom (Tsunami's mom) feel bad. I didn't mean to! I am sure if Baby Hulk had a heart surgery to recover from and the set backs Tsunami had because of infantile seizures, he wouldn't have been walking so soon. I didn't even think it would make Tsunami's mom feel bad, Tsunami will be 5 this summer and walks, but she got a bit defensive when I was doing my proud Momma bragging. I have kept my Instagram bragging to a minimum because I have a lot of followers who also have a child with Down syndrome, many close in age to Baby Hulk. I know the stress that come from seeing other babies close in age to yours doing things that your baby isn't doing. It makes me nervous. I often start to write something about his achievements in Instagram posts and then end up just posting a picture with no caption because I am afraid it will make someone feel bad. Now I am making more and more friends with all these other parents, friends in real life, friends on Facebook.  But I am excited! I want to shout it from the rooftops!!! Baby Hulk is WALKING!!! But I am afraid I will make someone else feel bad!

To be fair, Baby Hulk kind of HAD to learn to walk. His big brothers do not go easy on him. They wrestle with him, and drag him around, he has to keep up! He climbs on them and pulls their hair. He takes their toys from them and steals their food. They are his big brothers and they keep him on track. He had to learn to walk so he can run, whether he needs to run from them or after them I am not yet sure but I will know soon enough because this boy can move! Ms. Annie hardly had time to admire his perfect crawling before he started walking, and I really think he has his big brothers to thank for that. They don't do gentle just because he is different, or because he is a baby. He is their brother and they will treat him as such. Because of that he will continue to thrive! ...It he wants to keep up!

  But of course, this means more trouble for me...

Baby Hulk ~ And the Winner is...

It is World Down Syndrome Day! March 21st. The 21st day of the third month. Symbolizing the 3rd copy of the 21st chromosome that is Trisomy 21 or Down syndrome. I just can't let it go by without making a post of some kind!

This morning, while the boys and I were in the car taking Mr. Grey to school we talked about what makes Baby Hulk different. He has Down syndrome. He has 47 chromosomes and we only have 46. Well for a 5 and 6 year old this is just not okay! Having more means you win! So congratulations to all the winners out there! Today is your day to celebrate!

You hear this business about children leaving an imprint on you, changing you. Well Baby Hulk, I recently discovered, took this literally. He HAS changed me. Instead of leaving an imprint on my heart... he left on on my ribs. With his butt. I am guessing he did this in the last 4 months of his 9 months on the inside because he had his butt shoved so far up in my ribs I was constantly doing a gangsta lean to try give my poor ribs relief and a few days ago I discovered my ribs don't match! They are warped on the right side where his butt was! Today I understand though. That was him winning.That was his victory lap, his touch down dance. He said "I WIN!" and he left his mark. No one else in here has ever had this many chromosomes and no one else ever will!

Baby Hulk is always winning.

Baby Hulk ~ Happy Birthday (in photos)

good morning birthday boy!

ready to tour Olympia

then the tour ended abruptly when he face planted off of the step

tofu and rice for dinner

poor baby nose!

the problem with baby led weaning, no smashing, only sensible eating

HAPPY BIRTHDAY, BABY HULK!!!