As many of you know, when it comes to my kids, especially Teddy, I am a very optimistic kind of dad. I have this belief system that things are going to work out and Teddy is going to have great experiences in whatever direction life takes him. I treat Teddy exactly the same way as I treat Cooper and Cade as evidenced by the Lord of the Flies picture associated with this post 
. My little guy is going to get the opportunity to live his ceiling-less life and we’re going to help him achieve as much as he wants.
Teddy started kindergarten last week. For a parent who has a child with special needs this is obviously one of those life watermarks that you anxiously anticipate from the very beginning. So … on his first day Rebecca, Teddy, Cooper, Cade and I all walked my big boy to his first day of school. I have to admit that I was very anxious and had a very difficult time when his aide took his hand from mine and walked him into his new classroom but this is just another milestone in his life and one that all my other children will also have sooner than I would probably like — I was prepared and was secretly very pleased and proud of him and am excited about this new stage in his life.
Fast forward a week; everyday my little guy walks with Momma to school and every evening I wait for a report from Rebecca or a note from school letting me know how he did that day. From what I could ascertain, all was going very well. He is adjusting to his class, getting along with his peers, his teachers like him, etc. Most impressively, he actually began school with a much larger corpus of knowledge than just about all of the other kids in his class. Teddy has a fantastic vocabulary (hundreds of words), knows his letters, numbers, sounds, colors, animals, concepts, phrases, etc (thanks Sesame Street ) His teacher is very impressed as she is amazed that he knows so much at this young age — I could not be prouder of my little man.
So, being very enthusiastic about some of the reports coming from school, I wanted to get a little more insight about how he was doing in other areas, specifically socialization, comprehension of in-class material, and behavior. We scheduled a meeting with his teacher, speech therapist, and special ed coordinator for this afternoon and Rebecca and I went to his classroom and I sat in a chair that looks like it should be in a doll house (I’m about 6’3” so this was a pretty funny site I’m sure:) ) Going into the meeting, I had the expectation that we would confirm the things that we already knew about how he was doing but unfortunately we left the meeting with much more to think about.
Providing a little context, Rebecca and I are very strong believers in full integration of Teddy into his educational environment — We worked with our team to write up a perfect IEP that meets all his needs and is inline with how we want his educational experience to progress. It is so important to me that he is immersed in his environment and his environment is immersed with him. The more familiarity kids have with our children, the better opportunity they will have to live in accommodating and encouraging communities.
We began our meeting with the teacher in a very positive manner. Her name is Devon and she seems wonderful. She has a great personality with a sense of enthusiasm that is refreshing. But she also teaches a class with 29 kids (thanks State of Arizona — let’s make sure we build a few more prisions instead of hiring a few more teachers) and she barely has enough time to breathe let alone provide the really intensive amount of attention that Teddy requires when in a classroom. We should have seen some of it coming but of course some of the really difficult behaviors that we experience at home are accentuated in his classroom — he also seems to digress with some of his social skills that is very concerning not only to us but also his educational support group.
Teddy is having difficulty “modeling”, paying attention, sitting still and understanding what is appropriate in his environment, relating to other kids and just in general fitting into his new environment. The meeting was very positive and cordial with everyone optimistic about his future but I could tell that something just wasn’t right. There was an underlying concern among all of us that he may not be able to do exactly what we want him to be able to do. A teacher with 29 students cant spend an inordinate amount of time with any one child. Its simply not fair to the other kids and parents. I have to admit that I am concerned. Rebecca and I have our homework and we know what we need to work on with him but there is now a seed planted in all of our heads and it pains me to even think that he may not get to experience the type of educational experience that I have wanted for him since day one.
We’re certainly not even close to giving up or changing anything but I needed to share these feelings with my friends here and of course ask for any advice, help and encouragement.
Thanks for letting me bend your ears
Running this site is really hard. Keeping the servers online, paying the bills, dealing with the incessant spam and of course reconciling the time spent with my own life … My wife and three children and my very demanding job are very rewarding but are also time consuming.
But the most difficult thing to do when running a site like this is to actually write. It is impossible to keep people interested in a site without fantastic and unique content that is engaging, funny, and personal.
More than anything I want to write content, interact with my friends, give updates about my family and especially Teddy and just overall enjoy the community that should be lively here. But I will be the first person to tell you that the demands of life have gotten in the way of me being able to consistently do that.
That is where the Blog, The Ordinary Life of an Extraordinary Girl came into the picture. Alex’s mom (I’m actually not sure if she wants her name shared so I’ll just keep it this way) became a member last year and she was able to take the role of creating the most interesting stories on the site. She committed to chronicling Alex’s stories for one year and we were very lucky to have it. The stories of our favorite 17 year old teenager who sometimes had ”mood swings” and other times lit up her family with pride and joy could always be counted on to be the constant on this blog. The stories of the Bender family captivated us and honestly, every time a new post came out, many of us were riveted by the next story about Alex.
Let me tell you, the writing is amazing, the characters are wonderful and the plot is relatable. The blog was started almost one year ago when we were introduced to Alex. At that time Alex was a 16 year old high school sophomore who has Down syndrome. The blog started with Alex’s experiences in starting her sophomore year in school and ending with her participation with the Special Olympics.
The story begins on Alex’s third day of school at the inception of her school’s football season and her desire to play on the team. She eventually ended up and excelled as a valuable assistant to the team but I think this sets the perfect stage about her personality and the type of headstrong and confident kid she is.
I was hooked immediately and it became apparent to me that she (Alex ) is head strong and persistent and it runs in family because the blog posts kept coming and the audience became more interested with each posts. The blog is very honest also as it relays real world realities and feelings; such as when they found out that Alex would have Down syndrome. As a parent with a child that has Downs, the story hit home and I immediately knew that this blog would not be ordinary … it would be “extraordinary”.
As her story continued, the realities of Alex’s life started to really hit home with many of us that are new parents. As the blog says, “Life is not a bed of roses, unless you count the thorns”. The platitudes that many of us about our kids always being happy and well behaved melted away a little as we got to know Alex more intimately. I think those of us who have gotten to know Alex over the year know she can be a little obstinate, especially when it comes to sports; but that is one of her most wonderful characteristics.
The stories kept on coming and after a while I can honestly say that I felt like I knew the Benders. Watching the constant battle with weight to her amazing desire for inclusion and being active in her school and society. It became clear to me that the future my family has with my son, Teddy, is going to be something that although was unplanned and unexpected has the capacity to be interesting, rewarding and wonderful.
The posts in many ways act as training guide for those of us that are traversing the life of having a special needs child. When the Educating Alex post was written, Rebecca and I were right in the middle of our IEP for Teddy and we went into the meeting with a very strong beliefs about the benefits of integration and the role that the early childhood services would play in his life.
We want Teddy to be completely immersed in his environment and having Alex as a reference as to what can be accomplished, reinforced many of our decisions about how we want to approach Teddy’s education.
We also are committed to getting Teddy into Special Olympics as soon as we can and one of the great things about the blog was reading the wonderful experiences and the sense of accomplishment that it brings to our children’s lives. Recently, Alex participated Special Olympics and her successes make us all proud! Congratulations Alex and well done!
And then there are the Alexisms — I laughed when I read every single one of these and I can tell with Teddy (5) that these are coming my way also. If you have a chance to check them out, they are hilarious. Some of my favorites:
“I don’t know, can you ask me again?”
“I don’t know, I told you this a hundred million times”
“Talk to the hand”
Of all the posts that were written, the one that sticks with me the most when I think about Alex, is The Blue Shoes.
The battle of the shoes epitomizes the relationship between a mother and a daughter during the teenage years. Watching this relationship grow and reading about the dynamic of a family with a child who has Down syndrome and teenage syndrome brings an amazing sense of relief to me for some reason. I want Teddy’s experiences to be very unique and I want him to have an obstinate nature, make choices, and self awareness about what he wants.
Those crocks must have been disgusting but I think they will mean the world in the memories they have created.
I love these stories. I love the ups and the downs. I love the successes and the challenges. I love that she is amazingly active and that she has confidence and diversity in her life. I love that she is experiencing a life that is fulfilling and her family is accommodating. I love that she has a future and she is striving to be better every day. I love that she is difficult and ornery and speaks her mind. But most of all, I love that she gives me hope.
I want my child to have a wonderful, fulfilling, challenging, creative, diverse, interesting and most of all a happy life. I want him to be just like Alex.
Thank you so much for sharing your wonderful life with us Alex’s mom. I will miss your frequent updates but more than anything I will miss Alex.
Please stop by soon and give us updates.
Justin
Hello everyone..I wanted to post a video of my son Teddy. It has a song that I love that makes me tear up every time. I wanted to kick this multimedia experience off by posting something of my own. I absolutely encourage you all to post your own pictures and videos. As the site grows it will become easier. Please enjoy ..
I was sent this video today and I think it epitomizes what most parents who have children with Down syndrome feel. Life is worth living and only we will know how wonderful those lives can make our own.
Thanks Sharon for sharing.
–Justin
Hi All,
I’ve been trying to add some new and hopefully useful features to the site to help it integrate better into your larger on-line presence. I would love for you to try them out and tell me what you think.
1) New Photo Albums -
If you go to your profile page, you now have a link called “Album”. Here you can upload all the great pictures you have and those picture will be added to your activity stream where others will be able to see them and of course comment on how cute your little kiddos are.
2) Facebook and Twitter Integration -
In your profile you can synchronize your activity stream from Facebook and Twitter. Also you can send a tweet upon forum topic creation and topic reply. — Just go to your activity page and look below the update section to set it up…This is very cool. It also has some filters that will allow you to control the types of things you want to show up on the site
3) New Facebook “Like”, “Favorites”, and Facebook “Like” buttons -
These allow you to let the member know how much you like their posts and comments. It also can tell others in your Facebook network about the DSC activity and stuff you think they might enjoy.
4) Virtual Gifts -
Send gifts to your friends. In our particular community, many times we need some encouragement and a little something extra. Seeing these gifts, can really help lift spirits.
5) Website Links -
I know, I know …DSC isn’t the only website you go to Many of you visit wonderful other sites and blogs. Share those other sites with the community by adding a link and sharing it. I really look forward to visiting the amazing sites you all frequent
As always, please let me know if you have any questions or comments…Thanks for being apart of the site.
Justin
I hate the transition to a toddler bed, my hubby changed my oldest’s baby into the toddler bed way too soon! No more cage, so you wind up having to grow WITH the child and re-adapt to THEIR newly found and exhausting freedom,right?! Well, congrats on her graduation. I’m looking forward to getting to know you and your family as well. Thanks for the nice message. 
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