Tell me what you think!
Thanksgiving here was not our typical holiday. We still spent a lot of time enjoying food, thinking of family and friends and watching football, but Sean and Dev also had a new experience: Being on TV!
Why? Mainly to keep working on getting the message out there that the world will be a better place the more inclusive it is.
Inclusive: not excluding any particular groups of people in a society.
It seems that our society is becoming more inclusive and exclusive at the same time. We have an African American President, a Female Secretary of State, openly gay members of Congress, and a person with an Intellectual Disability on the ADA panel. Yet, the closed-mindedness of the political season was astounding. The division of past and future, good and evil and black and white seems to be razor sharp.
Raise Expectations started out as a way for Sean and I to look outward and share our experiences of “Special Education”. In the process we have come to realize that it is not just about the inclusion of kids with DS, ID or DDD (what ever DX), but it is more about celebrating differences. We do believe inclusive education is key in teaching appreciation and empathy to all.
The earlier we are exposed to different genders, races, religions, cultures, abilities (physical and intellectual) and ideologies the less scary they are; the sooner we can learn the value that each difference brings to this world. I hope we, as a society, can learn to be more open minded, accepting and inclusive.
I’m going to choose to be Thankful and Hopeful, to live in the Positive. My new favorite quote is from Einstein: ” Learn from yesterday, Live for today, Hope for tomorrow”. Dev seems to do this everyday, she is, as Sean said “an ambassador of possibilities”.
Dev and Sean (and a few more cheer leaders will be on KING 5 New Day Northwest on December 5th at 11am! Please take a look!
Catching sight of your self in the store window can sometimes wake you up. What do I look like to others vs what I look like to myself. And more still what do I look like compared to what I think I look like.
We just found this great teaching video about DS done by the Kansas City DS Guild.
Our family enjoyed it, we decided it would be great to send on the teachers, principle, coaches at Dev’s school. They also thought it was well done and thought it would be a great thing to show their student population through “mentorship classes”. The school strives to be inclusive and has a variety of kids in a variety of settings. Yeah! Lots of great stuff right.
Almost as an after thought we decided to share it with Dev, after all she is an expert when it comes to DS, right… Dev knows she has DS, like she knows she as blond hair and girl parts. We have talked about how it may be harder for her to learn new things, or say certain sounds; how she is super flexible and very empathetic as being related to DS, but not overly so.
9.9 times out of 10 when I see Dev I see Dev, I do not see Down Syndrome. 9.9 times out of 10 when I head to store I’m not thinking about the jean’s and t-shirt I have on… But when I get to the store what do others see… When Dev gets to school/on the bus, what do others see…
Every morning when I get up I do not think about how blessed I am to wake up in a bed, warm, with food in the fridge. I also do not think about being challenged by my serious need for glasses or my constant disorganization. I get up put on my glasses, and get going on the day. Dev is the same. She does not get up each day and say “oh yeah, I have DS, I need to work on… today” She just gets going.
After Dev watched the video, she stated, “ I have 47 chromosomes” (yep), “cool”. Then she said, “I need to find a friend with DS, because they make great friends”. She sees herself as the person able to be a good friend to a person with DS, as well as the person with DS. She identifies with both sides of the picture. I think that is remarkable. I what more people to see the world from the possibilities point of view, and open their minds and hearts.
To order the film or to donate to this great program follow this link: http://www.justlikeyou-downsyndrome.org/support/
That is the slogan on the Special Olympics Blog site. What a great sentiment: Unity, coming together as one, working for a common goal. It seem so obvious, why is it so difficult?
We are new to Special Olympics. We have had limited interactions, Sean helped with physicals for a few years in Florida when the kids where little, but Dev has never competed, and we have not volunteered recently. We have always trended towards an inclusive reality, and Dev has been able to participate.
For the most part we just signed her up, continuing with the “ask for forgiveness rather than permission” philosophy. Pre-school- elementary soccer, softball, dance, gymnastic, basketball, swimming… You name it, Dev was on a team and loved it. As parents we helped coach or supplied snacks. The other parents and coaches were always encouraging, the teammates played and enjoyed too, Unified to win the games/scores/play.
Moving in to middle school things became harder, as skills progressed. The middle school in Michigan had a “no cut” policy for some sports, so those are the ones she played. Her early experiences and abilities gave her skills to be included. She played on the B teams for middle school basketball, and swam. She also joined a rock climbing club, what a great sport! In Seattle she also played on basketball team (#14) and enjoyed gymnastics classes.
If we could find a convenient climbing gym, I think she would still be climbing
High school, as many of you know, she has been cheer leading. First she joined a cheer team specifically for kids with disabilities. It was a wonderful experience and Dev learned a lot of cheering skills, but also learned she liked inclusive teams. So when she made the high school team for her sophomore year she was thrilled! She has learned more cheers and dances than I ever thought she would be able too. Recently a friend mentioned the Unified Soccer Team at Hale. The teams have equal numbers of players with and with out intellectual disabilities.
Through the years, the coaches and the teammates have learned a lot too, not to pre-judge or underestimate. Teams work when everyone is working together for a common goal. Each member of the team has a role, some are big some are small, but they rely on each other. I hope that is the direction the Special Olympics are going with their Unified Team approach.
In life our lives are tied to each other. We can build each other up or tear each other down, but we are connected. We learn from ALL of those around us, how we treat others is how we will be treated. “We all live with the objective of being happy; our lives are all different and yet the same” (Ann Frank). Together, unified, we can make the world a better place.
We love to bike. We prefer to stay on multi-use paths, but, clearly, these get busy and there are a lot of things to navigate and manage. Dev did not learn to ride over night, but it has been worth all the effort! Here’s her bike story:
First time on a tricycle with a push pole: around age 2 1/2. Dev walked really early around 14 months, but the reciprocal movement of pedaling is so different; we did a lot more pushing than she did pedaling. We tried attaching her feet to the pedals and all kids of stuff.
First time on a bike with training wheels was around 3 1/2 years… What a rock star! We could still walk faster than she would ride, but “Wow”. We did not know things would not change for a while…
Training wheels with increasing size and stature, trailing bikes and tandems from age 5 till age 11ish. It is amazing when we look back at it. So many hours spent, so much money spent! Bikes, several types/styles of training wheels. The last ones were even called “Fat Wheels”. They look like mountain bike tires and they fit on bigger bike frames. But for real family rides, we needed more control and speed for the family to go places together, so we also had trailer bikes and finally a tandem. For one summer I remember being on the front of the tandem, Dev in the second set, and Ian on the trailer attached to the tandem…it worked well going down hill, but a lot of work on the way back up! I wish I had a picture! Then we heard about the “Lose the Training Wheels” program: http://www.losethetrainingwheels.org/
What a great program. Dev was riding with out training wheels by the end of week. It was amazing. We still put in many hours of practice. The amount of multi-tasking that goes into riding well is amazing. Balance, speed, steering all at once. Then you add in environment, bumps on the pavement, hill, people, cars… It is not easy and it takes a long time. Here is the video of her riding today–age 15.
After the Lose the Training Wheels program we practiced and practiced in parking lots, on family rides, every where we could. She rode her bike to school with friends a few times at the beginning of 6th grade! She was 12. The girls figured out that the moms would also drive a car pool and opted for that most days :-), but what a gift to ride with typical peers! She rode to the neighborhood pool with her friends and sibs. We rent bikes at the beach; we take bikes with us on rode trip vacation. She still likes to follow a leader, her brother (6yrs her junior) is a faster more confident rider, but she rides at a pace that does not drive anyone crazy. Now we ride as a family lots of places and are considering a bike touring “race”.
If Dev was 4-6 now, what would we do? I think we would try one of those “balance” bikes that look like bikes with out the pedals. I think we would not even try training wheels, just go from the tricycle to a balance bike and back and forth. Get the reciprocal motion on the tricycle and the balance from the “balance bike”. Her younger brother learned to balance on one of these and it was a much easier transition to the bike than Dev’s older sister’s from training wheels to a free bike.
So we have no question all of our time, sweat and elbow grease was worth it already, but other benefits have we earned? Social inclusion, family time together, physical fitness all wonderful. Independence, pre-driving skills… that is certainly true for “typical” teens so what about Dev? She has learned a lot of the rules of the road, “tight to the right”, how to steer and not look at the handle bars, avoid obstacles, merge, speed matching… So do I think Dev will drive? I do think so. It will take more time and more practice and the final will be more restricted (maybe just on the farm in Missouri) but I do think Dev will drive. I know she will almost as proud as we are already.
IEP’s, School, Education
I had a nice meeting with Devon’s team. I really enjoy the teachers I am dealing with for Dev’s 9th grade… I guess that is the way of public school, each year is so dependent on the teachers. Dev has done really well transitioning to high school. She has friends, she loves her classes, joined clubs, even tried out for Cheer and made the team (next post).
My only question is how much has she learned and is a “real” diploma in reach, if so what is her best chance of reaching it…
Dev has been in the 9th grade Academy–gen ed curriculum–with a “Focus” study skills class to help with homework and understanding. Dev has LOVED this…. She has had great success with Science–great teacher– no book… lots of labs… lots of student group work… first semester was a lot of work on matter and energy, second semester lots of robots, space and wave forms… She has loved this. Health has also been a great class. Person health, fitness, diet, anatomy… all that stuff. Wonderful. English and History have been hard. A lot of WWII books as the classes are linked. Wow. We read most of the books together—I read and edited out loud the main books- “NIGHT” and “When Elephants Dance” Both amazing books, but both have lots of imagery I do not want in my head dealing with war, violence, torture, inhuman atrocities of our true past… Really intense stuff. I’m glad we read them together. I do think she got something out of the stories, wars are terrible, humans can be inhumane, hope that we can learn from the past… Then she has had Math, Mentorship and computer science in the Special Ed contained class at school. Math was a little too easy, she needs functional math, but she also can do simple algebra… Mentorship she has made some friends and had fun. Computer science was fun and her use of the computer has improved. All good stuff right…
It is all great exposure… to a curriculum that really challenges her. The only problem is the grading of some her assignments… In Science we have not had a problem. She is expected to understand a step above her ability–great! In Health it is similar, she does projects mainly computer generated–great. The trouble is when she gets full credit for “Devon’s Level” work… What is “Devon’s Level” and why is it some non-changing level… Why can she turn in a page of work–tiny print not double spaced– with out a single period or capital letter… And this is after “Focus”… And this is the end of the year…
So we are willing to work with the system. So she can be included in the gen ed classes, exposed to the curriculum but not held to elementary standards, have social opportunities for success and failure… Or in special ed and work at her ability and hopefully improve that ability, but miss some of the cool academic stuff and some social opportunities…
What do we do? What is RIGHT? The implications seem so daunting. So…
We asked Dev what she wanted… There is a concept… She wanted Science in gen ed, a little more work in Math, Language arts and History in Special Ed, and some fun electives (drama). So the plan is: Read 180 and History in Special Ed, Personal health/home ec. in gen ed, Science in gen ed, and math where it fits in either “remedial gen ed math” or math in the special ed room. We will see how it goes.
I’m glad we are working with people that seem to be working with us rather than against us. We will let you know how it goes
Last night Dev had a great night at Gymnastics. She was so excited to be in the Jr. High and High School class at the Gym.
She enjoyed gym classes for many years as a young kid–age 3 threw 9 or 10. She has always been an active kid, walking early around 15 months. We started gymnastics in part because her older sister was in classes and for “therapy”: strength, balance, social, following rules… She really enjoyed it and did well. At one point we got freaked out about cervical instability and took a break from the gym. We had her spine checked out and she was within normal limits. But by then life moved on and gymnastics turned into basketball, rock climbing, and swimming.
So 2011 we are in Seattle, starting high school, Dev sees the Cheerleaders… How fun! Now we are in the Gym 2 days a week, she has a great cartwheel and amazing flexibility! This time it is her brothers turn to be tagged along, and he is in the gym too.
We also found out about a Cheerleading team called “Shooting Stars” in Woodenville. What a neat program, here is the web-page: http://cheer.eastsidegymnastics.com/ It is a “special needs” team… So I have some trouble with the team, why not have a kid on a regular team and make it “inclusive” but I’m not going there this time. Dev is very capable and this is a great team that has many levels of ability. It is great experience for Dev and she will use it when she tries out for the High School Team!
I will send out more information once the cheer competition dates are set!
So the second time around was better than the first! Not that the first was “bad” but it was not easy and it seemed less productive. It had a more grand scale about life in general, rather than the freshman year I was prepared for.
It was fun, yes I said that, in that we all seemed more on the same page. They knew Dev a little more and I think they felt a little more secure with her being in some of the Gen-Ed curriculum. She was getting a D+ in science with out any adjusted testing… The wonderful science teacher was happy to have Dev in his class and thought she was appropriately place! Great! Health she was doing well in, Computers and Math she was already working with special ed here. So lots of good stuff.
We planned for the next term where she would have Language Arts and History. Here the curriculum is more adaptable and more familiar to the team. Dev will be pulled out of Language Arts for her Speech rather than Focus, and the Focus will be able to keep her up to speed. So far so good.
Cheer leading/Drama/Sports Cheer Leading looks very promising. Dev met with the current team and coach. The special ed coordinator has a good relationship with the coach from the past, and the coach is more than willing to have Dev try out for the squad in the Spring. Drama… we are still working on the Drama leader… I think there should be a spot for Dev to dance in Hair Spray– it is only all about breaking social stereotypes and inclusion… I’ll keep you posted on this one.
So all and all, Dev is enjoying High School!
Here is Devon’s impression of her first day of classes at Nathan Hale High School at the link at the bottom. She is in the 9th grade Academy regular education classes (with course work modification as needed) for “block classes” Health and Science, elective computer science, Focus (assisted study hall for kids with IEP’s) then assisted Math. This will be her schedule for 10 weeks, then the block classes will change to Language Arts and History.
At this point all of her teachers have been supportive and very willing to work with us for a schedule that works for everyone.
Dev is already getting involved in extra curricular activities including working at the school store, she plans to swim with the swim team this winter and tryout for Cheer squad in the spring.
September 27th will be the school’s open house where we will meet more of her teachers and get more information. We will let you know how it goes!
Here is Dev:
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