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.

Baby Hulk ~ What I've Learned

Oh my goodness guess what!? Baby Hulk is 2 months old today!!!! Where is the time going!!!??? This week I've noticed he is beginning to push with his arms lifting his chest up off the floor during tummy time, and he is vocalizing and smiling a lot more!

And now on to business! For those who know me, I  for some reason discover and retain ridiculous information that serves me absolutely no purpose, like that giraffe is kosher, if a Jewish person wanted to eat a giraffe or drink it's milk they could... I don't know why random facts like that interest me but they do. Well yesterday I learned some things about Down syndrome that interest me in that same way only this time it is information that is relevant so I just have to share!

Okay so! Down syndrome is an extra chromosome. Typically we have 46 chromosomes. They come in pairs, 2 sex chromosomes and then the rest are numbered by size smallest to largest 1-22. So 22 should be the smallest chromosome... but it's NOT!!!! Whoever was in charge of numbering them all screwed up! 21 is!!!! It just has a sneaky little line on it that makes it appear to be larger than 22. Okay so maybe I'm the only one who thinks it's a fun fact that someone screwed up there.

I learned this information yesterday. Baby Hulk had his first Genealogy appointment. Apparently we are over achievers. They were just expecting to tell us he needed to be in the Birth to 3 Early Intervention program and to let us know to set up an eye appointment and find a good pediatrician who is knowledgeable in DS... well... Done, meeting with Birth to 3 tomorrow, and done!

I'm super proud of my big boy and feeling like I can handle all of these appointments now. I am such a procrastinator, I hate making appointments and I dread them once they are made but I have been doing so good with making his appointments and I was actually excited to go to meet with the genetics counselor and I am even excited to have the Birth to 3 month people coming tomorrow even though my house is a mess!!! I am ready! I know Baby Hulk is awesome and I can't wait to show him off!

Baby Hulk ~ A Family Visit

I missed my regular Thursday post marking Baby Hulk's 7th week of life because we had very special visitors! Darling Husband's sister, Hooker, her baby daddy, Goat45, and my new, one and only, nephew, Boogie Blue Eyes!!!!  It was so wonderful to have some of Darling Husband's family finally get to meet Baby Hulk. Now before I get too far past that, no, my sister in law is not in the sex industry but she is pretty rocking with a crochet hook! I really think she should join Buttons in her sky scarf journey only crocheting her way through the year's skies. I wonder what the Wisconsin skies look like!

Not much to update on so how about some pictures of Baby Hulk and his visitors!

Our adventure in the cold out by the boardwalk downtown. It was freezing!!! You can't even see Baby Hulk all bundled up in 2 blankets and a Moby Wrap! Then we came home for a special photo shoot of the babies in their cute matching get ups that Momma Pru dropped by to give to us! I love my Momma! Totally unexpected!

 Boogie Blue Eyes really loved his cousins. I wish those guys would move here! I love my family!

Tune in next Thursday! I should be back to my regular post day and should have A LOT to talk about! What with our first appointment with the genetics counselor AND Baby Hulk's hip ultrasound! I should probably push it back to Friday because that is when we will have our first home visit from Parent to Parent and Early Childhood Learning but that will have to wait until the next week! Don't worry January is FULL of appointments to share with you! So! Until next time!

Baby Hulk ~ "That's Retarded"

I have been waiting for someone to say "that's retarded" or call someone a "retard" and to be angered by it. People have said it, I just haven't been angry yet. I actually felt bad for Buttons when she herself let the "R" word slip. She cringed the moment it left her lips and covered her mouth and apologized profusely. I wasn't angry though.
 
 I just don't feel angry about it. I feel like "retarded" has become like the word "dumb". It has been used incorrectly for so long that it has lost it's power. I feel like retarded is the new dumb. Were people unable to speak offended by the usage of the word "dumb"? Are they still offended by it?

What I find offensive is when I read about down syndrome and in the list of symptoms associated with it says "mental retardation" that makes me angry because as far as I am concerned my son is no such thing! I was reading to him off the list last night and telling him what the symptoms of his syndrome were I got to mental retardation and was angry! I skipped it. I wasn't about to tell my son that he was mentally retarded!  That is worse to me than just throwing the word around! After discussing it with Darling Husband I found that it is more accepted in the community to call it an intellectual disability.  Don't call my son retarded. Call your friends retarded all you like but you better not use it in its proper form and you certainly may not use it in reference to my son! He is chromosomally fancy! (To find out more about preferred language visit here)

Baby Hulk has been his regular awesome self. He keeps sneaking smiles at us. I am not 100% sure that they are real smiles but I am pretty sure... They happen at the appropriate times but then I think we get too excited because they quickly vanish and then are replaced by a very shocked and uncertain look like, "Wait! What did I do!? Why are you squealing!?" He has also started talking back. At first I wasn't quite sure about this either because the noises he was making almost sounded like cries but it was just one shout and then he was quite content and would look at me like he was waiting for an answer to the question he had apparently just asked me. Today at exactly 6 weeks I got the 100% sure he is talking, "agoo" once again right on schedule developmentally. I love how he is paying no attention to the developmental chart of children with downs.  He really is just a normal baby.

This baby pretty much rocks! You should be jealous.

Baby Hulk ~ Eyes

That moment Baby Hulk was born, before anyone said anything. That moment when they plopped him on my chest and he looked up at me. I saw his eyes and saw the down syndrome and I was terrified. I thought no, he can't be, this isn't how things are supposed to happen. Now I look at my sweet perfect baby boy and feel so guilty that instead of the instant love and tears of joy that are supposed to happen, I looked into his beautiful eyes and thought "no". I looked him in the eyes and thought that! Now I can't help but ruin my wonderful moments with him. I am kissing his chunky cheeks and he does his little half smirk half smile face and I can see in his eyes that he loves me and I feel soooo guilty that I thought that way, that I felt that way, when we first met face to face.

I wonder what other people who should have had downs babies think when they see children with down syndrome? I shouldn't be feeling guilty. Do you know why I do have a downs baby? Why I was surprised by it? I refused the testing. I didn't want it. If there was the chance of something being wrong I didn't want to know. I didn't even want the to have the thought of terminating the pregnancy. Sure I didn't have any risk factor so it honestly didn't even cross my mind that he would have any issues, but just as I did in my previous pregnancies I didn't have the testing because while I am pro-choice, I think everyone should make their own choice and my choice, I could never have an abortion, but if I knew something was wrong, who knows where my mind would go. But I know in the end I would keep the baby no matter what so just thinking about terminating would be like 1,000x worse than it was looking into those eyes and thinking "no".

And do you know what? Those eyes are now another thing to add to the list of perfection! (DOOM!!!!!) Today Momma Pru came over to watch the big boys and Darling Husband and I loaded Baby Hulk into my car, Selina Excalibur Ladytron , and we drove up to fancy schmancy rich people Bellevue, to see a special ophthalmologist. She gave him a very thorough eye exam, dilated pupils and all, and determined he was perfect! 50% of people with down syndrome have some sort of eye problem, cataracts, a lazy eye, cross eyed. I just knew this was the doom appointment! I have the WORST EYES EVER!!!! Seriously, my feather weight glasses lenses are still 1/4 inch thick. I have hardcore coke bottle lenses. I am not even exaggerating here! I am just like one point away from being declared legally blind. So I just knew between the 50% and the 99% chances of downs and genetics this appointment was sure to result in doom. Not only did it not result in doom, the doctor told us his tracking ability and over all eye control was better than most babies his age, down syndrome or not! I had actually even wondered about that because he almost never goes all cross eyes like Lumpy and Mr. Grey did as babies. I am soooo excited!!!!

I would like to go back to the thoughts of terminating a pregnancy because you find out baby has downs. Back to those people who should have a downs baby. Shocking fact here for you. 90% of people who find out through early testing, that their baby has downs, terminate the pregnancy! 90%!!! This is amazing to me. I thought there were a LOT more pro-life people out there than that... or do the pro-life people somehow just not produce chromosomaly fancy (why yes I did just make that up) babies? I was amazed by this! I feel like people just aren't educated enough about down syndrome and how much better it is now than it was even just 30 years ago for people who have it! And look at Baby Hulk! He is AMAZING!!! I am sorry for those people. It is scary, but it is an exciting adventure we are going through with Baby Hulk of beating the odds!

Trisomy 21,
Meet Baby Hulk

Sincerely,