More Alike Than Different

October is National Down Syndrome Awareness month and for the past 3 years we have held a garage sale to raise money and awareness in our community.  We didn't do it this year but I like the idea of raising awareness and educating the general public and anyone that my boy and others might come in contact with, about people with Down syndrome.  I recall at one of my garage sales a lady made the commit that when she was younger people with Down syndrome were institutionalized and she didn't realize that even today they were capable of doing so much.  Remarks like these make me realize that yes we have come a long way but at the same time it makes me understand that educating and raising awareness is going to be an ongoing job for our family.  The slogan for the National Down Syndrome Congress is "More Alike Than Different" Find it here and that is so true.  My boy has feelings just like other kids.  His feelings get hurt if his sister shuts her door and doesn't want to play anymore.  He loves to shoot baskets and kick the soccer ball and he has a sense of humor.  So yes More Alike Than Different. 

School is a big place for educating his peers and I love that inclusion is alive and kicking in our general education system.  I love it when we go to the park and a child comes up and says that my boy is in her class and she says hi and trys to play with him.  This is because he is in her class and not separated from the other kids.  He loves climbing up the slide just like the little boy before him did and then both of them sliding down giggling all the way.  My boy is learning the same things in school that all the other kids are learning.  He knows his numbers and colors, shapes and recognizes some words.  He knows when someone is being nice to him and wants to play, because you don't have to have words to show kindness and interest in playing. 

Sometimes I forget that a lot of people really don't know what Down syndrome is.  My favorite one is when a neighbor asked if I drank during my pregnancy and that is why my boy has Down syndrome.  I can only imagine what she thought of me before she finally had the nerve to ask me.  Another common mistake is when someone thinks that he is suffering from Down syndrome.  It is not a disease and he is not in pain. Down syndrome is a genetic disorder where he has 47 chromosomes instead of 46.  This extra chromosome shows itself in different ways and some of those ways are in his appearance, speech and his cognitive powers.  His cognitive powers gives him this sixth sense almost that he can tell you have a kind heart just by being in your presence.  He knows and he will let you know he knows with a hug.  He does not hand these out to just anyone.  He has an intellectual disability but all this means to us is that he learns new things at his own pace. 

I am not even scratching the surface of what you need to understand about my boy.  I just want you to take from this post that I am ok when you ask me questions otherwise you might think I am a drunk.  I am not offended by questions because I do not expect others to know all about Down syndrome.  I knew nothing before my boy was born.  You can also go to NDSS to find out more.  I especially like it when kids ask questions and I have learned I like to help them see that he isn't doing anything different than them.  I might ask them a question and relate what my boy is doing to what they said they like to do.  The key here is More Alike Than Different.  I just give them a different perspective on things.  The first time I encountered some kids laughing and pointing at my boy we were renting some movies and I had feelings of anger and hurt.  I had to put those aside for later and I quickly addressed the kids with a hello and stated that my boy was looking for a certain movie and asked them if they were doing the same.  They appeared shocked and quickly stated yes and then I told my boy to say hi (hoping that he would) and then they said hi and quickly disappeared.  At the moment I had no idea what I was saying or doing all I wanted to do is let them know I saw what was going on and I didn't know how to do this other than be nice.  They are kids and they made me cry.  Later that is.   So yes let's educate everyone and include people with Down syndrome because we can.   You will see ignorance in the ones poking fun and laughing and those are the ones we need to reach out to.   So please remember this month and every month after that people with Down syndrome are More Alike Than Different. 

Autopilot

This weekend rolled around and we realized that we had an entire day that we didn't have anything planned.  I am not sure when the last time this happened, I think it was the middle of summer when we last enjoyed a day to do whatever we wanted.  I am talking the entire day.  It is days like this when you can relax and just take in the day as it comes.  We lounged around had breakfast and moved to the outside as quickly as our relaxed state of mind would let us.  My girl and Denis worked on the yard while me and my boy made some good use of the driveway.  We got some basketball in and my boy even rode his bike up and down the sidewalk.  My boy is getting to the age when we just need to expect more from him when it comes to doing things for himself and I think it takes a day like this when we aren't focused on getting somewhere and being on a schedule to realize that I am not teaching him his self help skills like I should be.  My boy wanted me to steer his bike and then that lead me to notice other things that I do automatically for him and really I am on autopilot when it comes to the day to day stuff with him.  It all starts with me getting him a drink without him asking, getting him dressed and helping him into the car.  I don't think about this stuff I just do it.  That is how it has always been and to be honest I think it will be hard to switch my gears but when he decided he wanted to go outside without any clothes on and not caring that he didn't have any clothes on made me think have I taught him that clothes are needed before we go outside.  The simple task of teaching him the thing that he puts on is a shirt have I over looked all these little things that you think are something that is just known.  You need clothes and so this is where my carefree day thoughts ended up.  Me worrying that I need to focus more on his self help skills.  My thoughts are often cluttered with worrying about schedules and do we have enough pizza crust and bread made for my boy to eat and how is he doing in school and what can I do to keep him from just sitting in front of the TV for hours at a time, not does he know what a shirt is and can he put it on.  I am awake now to this little detail and that is usually how it works for me.  I do so much until I guess I can squish one more thing in to focus on.  The only thing wrong with this is I will probably drop something else that I was doing to make this fit into my things to worry about.  I am like that.  I can only deal with so much and the other stuff just gets ignored.  The thing is he is totally capable of doing everything that I would ask of him with a little effort from both of us.  He would have to want to and try.  That is always the challenge with him and I think that is how I got to be on autopilot for so long.  So a day of nothing is what it took to get me off autopilot.  I am not sure when the next day of nothing will be but we sure did enjoy this one.

When I See Dad

My Sweets!!

I often worry that Denis doesn't always see and feel how important he is to the balance of things when it comes to the family.  He is our rock and sometimes I think we forget that he makes lots of sacrifices everyday for the ones he loves.  His very presence makes everything better and for me just hearing his voice does the trick. This weekend was a weekend of soccer and we spent our weekend in Oklahoma City. 

Denis had to work Sat. night so that left me to get my girl ready for her second game on Sunday.  This really isn't a big deal for me, but my girl was completely out of sorts all morning up until she saw her dad at the game Sunday.  They have this unspoken understanding of what needs to be done to get ready for the next big game.  They talk soccer, not the kind of soccer talk you would expect between a twelve year old and her dad, they talk international soccer, who is playing, what the scores where and who performed well and if they have time to watch some soccer on TV well that is even better.  He makes sure her shoes are tied right and that she is stretched and ready to go.  My role in all of this is to just make sure she is getting food in her body, so I fuel the engine.  This is important but it doesn't help with the emotional prepping of the day.  Denis was missed Sunday morning and she was quiet up until she saw him.  When we arrived to the field for the big game she always puts her shoes on before she gets to the field so when she wasn't doing this I asked her if she wanted to put her shoes on first and she said when she sees her dad. 

I know he knows he is needed for all the little things he does but I don't think he truely understands what he means to us.  So thank you Denis for rushing home from work with arms open and ears ready to listen to all the details of the day.  Thank you for always thinking of the little details, creating fun events and understanding that a girl sometimes just needs to talk and doesn't always need things to be fixed.  You are the core of all things wonderful when it comes to this family.  We love you!!

Denis built this train track for the boy

Fall On Me

We have been enjoying some cooler temperatures lately which means that we can open up the windows and let the cool breeze flow through the house.  We all love this change in the weather, we get a kid like energy about us and it feels good. 

The cooler weather invited us outside last night and we quickly went with the moment.  I threw my homemade veggie lasagna in the oven and then we all flew out of the house into the fresh air that welcomed us with open arms.  We took a quick walk up to the kids schools and listened to the trees blowing in the wind and enjoyed the peacefulness of the Fall weather that is upon us.  I love these moments, being outside and moving with the family.  When we got back home we were greeted by the aroma of dinner.  Oh what a great smell that was. 

Last night was family night and we didn't even plan it.  After we all devoured our food, yes devoured, my girl and Denis went back outside for some soccer fun.  This weather just kept calling us back outside and we can't say no.  Fall is upon us and we are going to take full advantage of her and hope that she stays longer than she usually does.  We have welcomed her into our house and enjoyed her gentle breezes so I hope she knows she is welcome to stay. 

Let Me Pencil You In

I don't quite remember how old my boy was when he had his first haircut.  I do remember what he was wearing, where we went and how it all played out.  It was not a happy moment and the tears were not of joy.  If you are going to cut his hair you might as well take some blood from his arm also.  You get the same result either way.  I remember when we took him to a genetic specialist who was from West Virginia, he told us a lot of useful information and then for some reason this simple statement stuck with me.  He said, "We have a lot more bad haircuts in our future".  Ok I thought, but he was so right.  My boy has had wings on the side and he has almost had sideburns.  I don't want to leave out the one side is longer than the other and I always love the one lonely strand that is way longer than all the others.  Not to long ago I started cutting randomly because we were going to shave his head and I needed to thin his hair out a little and the clippers wouldn't work when we went to shave him.  Yes that was a good look for him. 

For the longest time my friend would cut his hair and shave it for me.  This involved me holding him while she frantically did her thing.  He aways looked so sharp when she was done.  This sounds like it worked for us but it was a wrestling match, the only thing missing was our wrestling outfits.  I totally would sport a mask.  Jackie would always remind me when it was time to cut his hair.  She had to do this because I would put it off as long as I could.  I hate this haircutting thing that we have to do.  I mean how long is to long.  I only say that because I can't stand the crying and screaming.  The last time Jackie cut his hair she got kicked pretty good.  I decided that this just wasn't working for us.  Jackie always took whatever Ethan dished out and kept pushing forward to finish.  She is a trooper for doing it so long and she tells me all the time that she still can.  I know at some point I am going to need her to come in and fix something I have done.  But I couldn't keep doing this.  So I have decided that we are going to cut his hair in sections.  I did his bangs about a month ago and a week later his sides and this weekend I did the back.  I have absolutely no training in cutting hair so you know he is looking sharp.  Jackie has given me pointers on what to do to thin out the hair without making it looking choppy.  I wish I could say that he is sporting a nice clean haircut but we are still showing off the uneven look and he wears it well.  Yes I am cutting his hair more often but for some reason so far it is less painful for everyone involved.  I have decided that I will open up my availability if anyone wants just their sides trimmed or maybe you want me to just take a little off the top.  I would love to pencil you in. 

Me, Myself and I

We are now what you would say up to our knees in soccer.  This is just the way we like it.  I love a good soccer game when I get to sit on the sidelines and cheer my girl on from a nice slouch chair with the breeze softly blowing my hair out of my face.  I love it!!  I love soccer when the weather is perfect and perfect for me is when the temperature requires a light jacket with my favorite jeans and there is always this quiet that is a perfect calm for me right before the game starts and before the tension rises from the excitement of who is going to score takes over my body, I love this calm moment.  My friend Tara always comments that I look calm and she is right, I am.  I know that everyone experiences the game in a different way and that is the joy of sports.  It is a roller coaster of emotions and after three days of soccer our bodies are tired.  As I sit here thinking about the weekend and my role in it, well I basically sat and ate the whole weekend.  It is amazing how exhausting sitting and watching your girl play soccer can be and then you are so hungry afterwards.  So that is what I did in Plano, TX while my girl ran up and down a huge soccer field for an hour six times in three days.  She is 12, she recovered nicely and is ready to do it again.  When we were leaving Texas with her new bling she said she had fun and that is all I care about.  Sure it is a bonus that she brought home a second place medal in a tournament that had almost 600 teams in it.  My girl and her teammates worked hard all weekend and Texas knows who TSCH is now.  The girls were amazing to watch and it is always neat to see a team come together and achieve something together.  I love that my girl is a part of a team. 

Showing off her new bling!

I remember being on the basketball team in junior high.  No I didn't play a lot and really I wasn't real sure of my abilities as a player and it showed on the court.  That honestly didn't matter to me so much.  I just loved being a part of the team.  Each time we went out on the court we all had the same goal and we needed each other to reach that goal.  Ok ok really it was all about the fun bus rides to away games.  Loved them!  I was all about the fun!!  Most of my teammates went on to play high school basketball but I really didn't have what it takes and that was ok, it was time for me to move on and that is what I will do now with this post I will move on.  I have completely somehow managed to make this post all about me, myself and I.  I am good like that.  I do tend to be quite selfish when I don't have my boy with me.  I take small pleasure in doing nothing and sometimes I forget that something needs to be done.  We left my boy home with his grandparents while we went to Plano.  That really is the way he prefers it.  He does not like soccer games and I end up at the farthest point away from the field that allows me to still kind of see what is going on and that is one reason we decided to leave him with his grandparents.  He gets a nice break from his mom and I get a break that leaves me missing that cute smile he gets when he knows I am coming to sit by him.  The thing about leaving him at home is I can totally focus all my attention on my girl.  I enjoyed shopping at IKEA with her and of course going out to eat and taking our time.  It truly was nice.  So sure we played soccer but mainly I got to bond with the girl. 

Just love these two

She scored

 

Happy Birthday and Goodbye

Bailey liked to play tease ball!! 

Well things have been a little shaken up around here lately.  I don't have a lot of time and I just wanted to check in and leave a little post of what is going down here at the Lane's.  As most of you know we recently had to say goodbye to our Bailey dog.  It is so funny how the little things that used to annoy you, I find myself missing.  He used to lay right in the middle of the the doorway.  You had to step over him and it was the same in the hallway.  Bailey was a big dog so he took up a lot of space and there was always a big chance that you were going to step on him.  He never seemed to mind when I would accidentally step on him.  He never minded it when my boy would crawl all over him either.  I am not sure that much bothered our dear Bailey except maybe the vacuum.  He would always move into the room I was going to vacuum next.  I know he thought I was chasing him.  He was quiet also, something you suddenly realized is a true blessing when you have a child that has sensory issues.  If he wanted something he had two ways of telling us.  One was to just simply put his head on our leg  and look up with those sweet eyes of his.  The second way always cracked my up.  He would sit in front of the TV if we were watching it.  Just his way of saying look at me.  How could we not when he was being so cute.  Yes we will miss him more than we realized.  I swear it is always the little things that we remember and love.

Now that I have caught you up on things, today is my baby girls 12th birthday.  I can't believe it myself.  It seems like it was just yesterday that she was playing with her dolls and doing art at the kitchen table and creating food experiments in the kitchen.  She is always into something and she isn't happy just sitting at home watching TV, she needs to be moving constantly.  She is 12 now and she is into different things, but at the same time she is still that little girl that is saying look mom, and I look only to find her making up some silly dance move.  I love these carefree moments in time that she so happily shares with us.  She is my sunshine and she makes me happy.  I will post more on the birthday stuff later.  She unfortunately has to wait to have her big party due to soccer all weekend but we are going to celebrate and celebrate big!!