Partners In Policymaking

Saturday, 19 October 2013

This weekend I started my first session of Partners In Policymaking and I am so excited for the information, tools, resources, and classmates that I will get to know over the next several months to help me better a better advocate for change.

This first session was an overview on the history of disability, the Disability Rights Movement, and Centers for Independent Living, and People First Language.

I admit to knowing very little about the Disability Rights Movement (I don't remember learning about it in school) so this was very eye-opening for me. I had no idea how much advocating and rallying people with disabilities have had to do over the years to get laws for equal access and opportunities for things that should simply be a basic right and not have had to fight for.

I learned about ADAPT and what they accomplished and what they are still accomplishing. I learned about Ed Roberts and what he did for the disability rights movement and his founding of the World Institute on Disability.

We watched a powerful film called Lives Worth Living (view the trailer at that link.)

I am really looking forward to next month's session topics of special education and inclusion. Maybe one day I will find myself on a state department of education advisory committee for special education.

I'd love it if this state had something like the New Jersey Coalition for Inclusive Education and the Maryland Coalition for Inclusive Education.

Hopefully, one day in the near future, that will happen.

 

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Self-Contained Classrooms

Friday, 16 August 2013

I realize that for some students a self-contained classroom is the better environment for them to learn in rather than a typical general education classroom. The general ed classrooms can be overcrowded with 20+ students while a self-contained classroom probably has less than 15 students. The faster pace of a general ed classroom can be overwhelming for students who need a slower pace. I know that IDEA states that schools have to offer a continuum of services and that includes self-contained classrooms.

But here are my issues with self-contained rooms based on the experiences and observations of these settings in two schools.

*Please remember these are just details we've either experienced or observed. I am not painting a broad picture of all self-contained classrooms. If your child hasn't entered the school system yet I am not saying that your experience will be like this. Parents need to observe all the classrooms that are possible placements for their child and make decisions on what is best for each individual child. Some self-contained rooms are the best placements for some children and there is nothing wrong with that if your child is thriving and you are happy with it. This blog post is about my own frustration with self-contained rooms in 2 schools.*

How is being in a self-contained (for the rest of this blog post referred to as SC) room any different from the general ed classrooms? They are still a group of students belonging to a classroom, right? They are in a classroom with the same students and teacher every day just like all the other classrooms right? Sort of. But in subtle ways they aren't 'part' of the general feeling of belonging with your grade-level same-age peers.

Here are my experiences and observations:

School A (where Kayla attended 1st and 2nd grade)

- While all of the students in the self-contained room are on an IEP (the I stands for Individualized, but I don't think there is much individualization to their education plans.) The 'standard' (what seems like the standard for this district) for mainstreaming (and that's what this set-up is - mainstreaming - not true inclusion) is the students in the self-contained room all go as a group to the same gen ed classroom for their mainstreaming time. And the amount of time for all those students is exactly the same. They get to join their typical peers for Lunch, Recess, Fine Arts, Social Studies and Science. If all 4 students went to the same gen ed classroom, where was the inclusion time for the rest of the 2nd grade classrooms?

- Meet the Teacher night for the gen ed teacher: the students' names were on all the desks except the 4 students who would be joining the classroom from the SC room. The teacher was just going to put those students at a table. (Thankfully the teacher realized that wouldn't work and found desks for them, but that didn't help on Meet the Teacher night when your child sees all the names on the desks but their own). Later in the school year all the students' names were on the outside of the door - except guess which 4 students didn't have their name on the door.

- During the 2nd grade field trip the students from the SC room were kept in a group with the aide from their classroom. There was no mingling them amongst the other chaperons and typical peers, or even adding a typical child or two to their group to foster some peer relationships. The only reason Kayla wasn't with them and was with a girl from the ged ed room was because I was a chaperon and I had the 2 girls in my 'group'.

- Kayla brought home a lot of 'busy work.' Worksheets on material that she had mastered but was still doing the same thing over and over. Worksheets that had identifying colors and shapes even though she was in 2nd grade and was well past already knowing that information.

- Kayla was in the SC room for 1st and 2nd grade yet she never worked on spelling or had spelling tests. She had minimal homework. At most it consisted of 5 sight word cards a week to learn. But she didn't have to do anything else with those cards ... not learning to spell the words, not even having to write the words 3x or something like that. She wasn't doing anything on the curriculum that typical 1st and 2nd graders were doing. When I asked when the class was going to work on spelling I was told they did that when the went to the other SC room (which was for 3rd-5th graders). Then when we wanted her in a 3rd grade gen ed classroom they complained how far behind she was and couldn't spell basic words ... well gee, I wonder why!

- This SC room for 1st and 2nd graders was not even in the cluster of the 1st and 2nd grade hallway. They were 3 hallways away. So how could they, or their typical peers, feel like they 'belong' with their peers if they can't even be in a classroom amongst the rest of the 1st and 2nd graders? This set up also fostered a lot of dependence because the students all traveled together with the classroom aide down the 3 hallways to their gen ed room. It wasn't like they could just go by themselves across the hall. (Near the end of the 2nd grade year I did ask for Kayla to go to the gen ed room for ELA and she went for 30 min during their phonics time and was able to go by herself.)

School B (Where Kayla was for 3rd grade last year and will be in 4th grade this year)

Kayla is not in the SC room in this school ... but I observed this classroom 2x because the school team wanted me to consider this placement for Kayla.

- This room is for K-5th grade. Yes, Kindergartners through 5th graders. Wrap your head around that for a minute. You know how little Kindergartners are and how big 5th graders are? In the same classroom. Last year there weren't any kids in K, but there was a 1st grader and there were 5th graders.

- Their mainstreaming time was split (there were 10-11 students in the classroom) between two first grade gen ed classrooms. First Grade. Every student in that SC classroom went to a first grade classroom. Even those big, tall, 5th grade boys. How is that appropriate?


- So, potentially, they could be in this same SC classroom their whole elementary school years starting with Kindergarten and remaining in the same class year after year through 5th grade. That's 6 years of the same classroom. And, some students, if they aren't 11 by a cut-off date, can stay an extra year in elementary school. Potential to be in the same SC room for 7 years.

- How is putting the 3rd, 4th, and 5th grade students in a 1st grade class for all their mainstreaming time teaching them how to interact and be with their same-age peers? Where is the interaction with their same-age peers?

- The kids in this class all seemed to be about the same with their verbal skills. Very minimal and saying 1 or 2 word sentences. There are 3 or 4 adults in the classroom. The majority of their time is spent with the adults and with each other (how much actual conversation can they accomplish with typical peers in a noisy lunchroom, or at recess when everyone is running around?) So all their conversational modeling is coming from each other and the adults in the classroom. How is that helping to facilitate and foster better communication skills with their peers?

- If Kayla was in that classroom she wouldn't have any typical peers to serve as role models to help with speech and language skills. Her verbal skills are a little bit above what I observed.

- Their classroom is located on the corner of where the K classrooms are. Again ... not anywhere near, or in the middle of, a group of gen ed classes. Once again that SC room and 2 others are clustered together at the end of a hallway. Those older students aren't anywhere near their same age peers.

- There was a fundraiser the school did with students running laps. The grade levels were broken up to run at different times. I went to watch Kayla. I didn't see any of the students from the SC class in with any of their grade-level peers. As I left the school I saw their class coming in the front doors.

- The schedule for field day was emailed out and I didn't see the SC classes on the schedules going out about field day. Then field day was rescheduled due to rain. This time the new schedules did list the SC classes, and their time slot was with the Kindergarten classes. The TMD class didn't even have any Kindergartners in their class! Again, how is that appropriate to have their field day with the Kindergartners? How does that look? At the minimum why couldn't they have split up and joined their 1st grade mainstreaming class?

- And again ... why are they not even being mainstreamed with their same-age peers?

- This is why I've been advocating so hard for Kayla to be in ged ed classes with resource room support. 

  

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Disability Envy

Friday, 9 August 2013

I think Lucas is having a bit of 'disability envy.' He wants to have a disability.

I imagine kids who have a sibling with a disability, or special needs, might go through this at one time or another - especially if they are the younger sibling.

Because face it - growing up with a disability usually gets you a lot of attention.

There could be multiple doctor appointments throughout the year with different specialists. Multiple therapies the child goes to; or therapists that come to the house. There could be a service coordinator, a personal care assistant, respite workers who come to the house all for the child with a disability.

The child with a disability might attend camps that are only for kids with disabilities. There are special events, or opportunities that are only for the child with a disability.

There are designated days, months, and organized fundraising walks that are specific to the child's disability. Opportunities for raising awareness, which to a younger sibling could look like multiple opportunities to celebrate -and bring attention to- something unique and special about the child with a disability.

The child without a disability only has their birthday to celebrate!

We are trying to balance the attention-scale so Lucas can feel just as much valued, appreciated, and celebrated as Kayla. He had T-ball, soccer, and his preschool performance that were all about him.

But sometimes it's still hard to find that balance.

At the beginning of summer Kayla went to a horse-riding camp that was set up through the base's Exceptional Family Member program. The night before the camp I explained to Lucas where Kayla was going, but that this time it wasn't for siblings too (a lot of times things we've done that are disability-related include the siblings). I told him while it wasn't only for kids with Down syndrome, it was for kids that had other disabilities as well.

He said, "I want to have a disability too so I can go to horse camp."

That was my first clue that he's really starting to notice the attention and focus that surrounds Kayla having Down syndrome, or a disability, or a special need, or being differently-abled. Take your pick!

Until recently Kayla's therapies didn't really have an impact on Lucas. Lucas wasn't born when she was getting Early Childhood Intervention in the home. Since then she has OT and ST in school. When we first moved here 3 years ago we did have private OT come to the house for several months, but she included Lucas as much as she could, and that has sense ended.

Last year we started ST outside of school, so once a week Lucas got used to going with Kayla to her ST and waiting in the waiting room.

This summer we increased the ST to 2x a week (it's only 30 min each time.) Then we added Vision Therapy to the schedule which is also 2x a week. All of a sudden on Tues and Thur we now go to VT and ST. That probably feels like a lot of waiting around to Lucas.

The first time Kayla went to VT for the initial evaluation Lucas was in the room with us. At the end the therapist let Lucas pick something out of the treasure box. She told him he couldn't get something at every visit but he could get something this time because he was so good, quiet, and patient while Kayla did all of her activities.

The days leading up to her next visit Lucas kept asking if he could get something out of the treasure box just this next time and then not again after that. I told him I didn't think so because the therapist already gave him something the first time and said he couldn't get something each time.

That next week during ST Kayla came out with a sticker. Lucas asked the ST if he could have a sticker (she wasn't Kayla's regular therapist) and she said to him, "Can you have a sticker too? Did you have speech therapy?" And I guess that was supposed to be Lucas's answer. I have to admit; I felt bad for him. He asked very nicely. He waits patiently in the waiting room. He plays quietly in the kids' area. He has to go to 4 therapy appointments a week with Kayla. And it was just a sticker - aren't they like a dime a dozen?

With Kayla's VT the kids get to pick something out of the treasure chest at the end of every session, but when they get 25 check marks they get to pick something out of the bigger prize box. And they get 3-4 check marks every session for working hard, so it doesn't take 25 visits to get to the big prize box. I told Lucas that every time Kayla reached 25 and got the prize box I would give him something too so he's being rewarded for being so good in the waiting room.

Now Kayla has to get glasses and has tried several pairs on. Lucas wanted to try on glasses too and was hoping he could get a pair. He had his appointment yesterday and he checked out with 20/20 vision. I told him he wasn't going to need glasses. I asked him if he was ok with not having glasses and he said yes, but he wanted to do vision therapy like Kayla. When I asked why he wants to do therapy he said, "So I can do all the fun stuff that Kayla is doing in there. I want to try all those things!"

Knowing what they have in the office for therapy and the different things they do I can see how it all looks like 'fun' to Lucas! And having to do it 2x a week I can see how they need to try and make it 'fun' for the kids who are doing the therapy too.

I tried to explain to him that he was lucky he didn't have to go to vision therapy because that meant his eyes work the way they are supposed to work; I said if they didn't he wouldn't be able to read as well as he does now and he can see how Kayla has trouble reading. I'm don't think I completely convinced him that it was better not to have to need vision therapy!

I try to praise him as much as I can for his good behavior in the waiting room. I know I should try to do more one-on-one things with him so he's getting attention (we did go to IHOP a couple times this summer for breakfast - just the 2 of us. That's always been one of our little treats together since Kayla can't have wheat.)

Beyond that, is there anything else I can do to help with his 'disability envy'?

 

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Tired of Labels

Thursday, 27 June 2013

Your child is born with an extra chromosome and receives a diagnosis of Down syndrome, or Trisomy 21.

You enter the school system, and usually around the ripe old age of 5 years, the school wants to do testing and evaluation on your child. This testing includes an I.Q. test. At 5 years old. Yet kids with no disabilities, or special needs, or risk of a developmental delay enter Kindergarten without having their I.Q. tested and being labeled.

Your child is given an I.Q. score and labeled with mental r*tardation (MR) and further labeled within the mild, moderate, or severe range.

Times change and the label of MR changes to mental or intellectual disability, but there are still ranges to attach to that label, to give more of a label.

Then you might live in a state where the school districts place your child in one of three - what they term - programs. (i.e. self-contained classrooms.)

But it can't be labeled just a plain old self-contained, or special education classroom. No, the classroom has to be broken down with labels, too.

The 3 types of programs are based on where your child's I.Q. score falls. The classrooms are called Educable Mentally Delayed (EMD), Trainable Mentally Delayed (TMD), and Profound Mentally Delayed (PMD). If the classrooms are labeled as such what does it say for the students inside those classrooms? Can you imagine your child being labeled as "trainable"? Aren't animals considered trainable? And why "educable"? Why aren't the general education classrooms labeled as "educable"? Aren't all students "educable"? Isn't that why we send our children to schools - to get an education?

At some level, maybe state, they have changed the labels of these classrooms to be "Mild, Moderate, and Severe". Yet everyone still refers to them as "EMD, TMD, PMD" rooms.

If your child doesn't have enough labels yet, society wants to label them on their level of functioning.

They will ask if your child is "high-functioning." I think "High-Functioning Autism" is a diagnosis now. If not official it is at least an acceptable label as I've seen "HFA" in articles.

I've heard mention of high-functioning and low-functioning, but I've never heard of anyone say someone is middle-functioning. Why not? Can't you be in the middle of high- and low-functioning? Why do you have to be either one or the other?

How come people without disabilities or special needs aren't labeled as high- or low-functioning? Isn't there a range of skills amongst that population as well?

Who determines what is high- and low-functioning anyway? What if you're in a wheelchair but have average intelligence? What level of functioning are you then if you have low mobility?

What if you have below-average intelligence but are physically capable of so much, or are gifted in some area of the arts? What level of functioning are you?

What if you have above-average intelligence but have no common sense or people skills? What level of functioning are you?
 
In this blog post I mentioned how the reporter said, "Garrett (a young man) is very highly functioning for someone with Down syndrome. He reads at the 3rd grade level and has the cognitive ability of an 8 or 9 year old."

"Very highly functioning for someone with Down syndrome." Really? What makes him so high-functioning if he has the cognitive ability of an 8 or 9 year old? What made the reporter say that? And what relevance did it have to the story? What if there are plenty of young adults with Down syndrome who have a cognitive ability older than an 8 or 9 year old? What if his same-age peers with Down syndrome have accomplished more than he has in terms of schooling or independence ... does it make them very, very highly-functioning? Did this reporter have such a low expectations or preconceived notions about people with Down syndrome that he came away with his interactions with Garrett so impressed that he felt the need to label him 'very highly-functioning'?

I've been asked in the past, or had comments made to me, about Kayla being 'high-functioning.' I don't know if she is or not. Based on what? Her I.Q. score? Compared to what? Compared to her typical same-age peers? She does a lot of things they do, but there are a lot of things she doesn't do. Compared to same-age peers who have Down syndrome? Again, she can do things that other kids with Down syndrome her age can't do, and they are able to do things she can't do. There is a wide variety of skills and abilities amongst the Down syndrome population just as there is in the typical population.

Kayla isn't high- or low-functioning. She functions period. She does what she is capable and able to do; sometimes with supports, accommodations and modifications, and sometimes without any supports.

Why do people with disabilities have to continuously be labeled and have label upon label stacked upon their shoulders? Can't they just be? Can't they just exist as is without having to fit in to boxes and labels?

 

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Thick Skin

Friday, 17 May 2013

On March 21, for World Down Syndrome Day, I went to Kayla's school to read the book High Fives and a Big Heart to her class. I also wanted to talk a little bit with her classmates about Down syndrome and what it does and doesn't mean for Kayla. I showed them this picture of her chromosomes and explained about the 3 chromosomes on #21.

I didn't have a lot of time to talk with them, but overall I think it went well.

At the beginning I asked if anyone heard of Down syndrome and what they knew about it. A few hands went up and the first girl I called on answered that her mom told her it was when someone acted younger than their age.

Another girl - J - one of Kayla's friends from the bus and who lives down the street from us, said "It's just a thing."

I like that. Down syndrome is no big deal ... it's just a thing!

I mentioned things that Kayla can still do, things that she likes, and places she's been to show how she is similar to her peers. I asked questions like, "Has anyone been on an airplane? Who likes roller coasters? Who likes to go to the beach?" and each time I saw her classmates all glancing over to see if Kayla was raising her hand to the questions too. I hope it made them see her as more like them than different.

Then I started reading the book. It's written and illustrated by a 4th grade class about Jeffrey, their classmate who has Down syndrome. One part of the book mentions that if anyone is mean to Jeffrey they will stick up for him.

There is a boy in Kayla's class who was sitting in the first row and I heard him mumble, "I wish I had someone to do that for me." An aide in the room quietly said his name and he again mumbled, "What? I'm always getting picked on at recess."

After I finished the book the class had to line up to go to art. As they were doing this, J, the girl I mentioned earlier, walked by me and told me, "Some other kids think Kayla is weird, but I don't think that."

Ouch. She wasn't saying it to be mean. I like J. She has always been friendly with Kayla, they play together outside and she's been inside our house a few times to play. I've wanted to ask her more about that; to ask what kids say about Kayla, to ask what Kayla does that makes other kids think she's weird, but I haven't had the chance.

I also willed myself not to cry as I left the school that day. Of course it hurts to hear that other kids think your kid is weird. Of course I know not everyone will like Kayla (or Lucas for that matter). We're not friends with everyone in our class and it's not realistic to expect that. I know kids can be made whether you have special needs or not (and I was reminded of this fact when I thought about the boy who mumbled out while I was reading the book about wishing he had someone to stick up for him.)

But as a parent your heart still hurts for your child.

I wrote about this experience and how parenting requires thick skin on the website What to Expect. You can read more in my article How My Daughter Helped Me Grow Thick Skin.

 

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Dignity of Risk

Tuesday, 23 April 2013

ESNP has an interesting video about Garrett, a young man with Down syndrome, and his training leading up to his first MMA fight.

Overall I thought they did a great job reporting this piece on Garrett, but I wish there wasn't the need to report that "Garrett is very highly functioning for someone with Down syndrome. He reads at the 3rd grade level and has the cognitive ability of an 8 or 9 year old." I didn't think that had relevance to his journey of participating in his first MMA fight. (The highly functioning for someone with Down syndrome bit I'll save for another blog post.)

I thought it was sad to hear that while growing up he didn't want to have friends, or associate with, any one who had Down syndrome or other disabilities. He didn't want to be called Garrett because Garrett was someone who has Down syndrome. We have talked to Kayla about having Down syndrome, she knows she has Ds, but I don't think at this point she grasps exactly what that means or how that affects her. I am trying to prepare myself that one day she may express being upset about having Down syndrome.

Garrett's father said a lot of people gave him a hard time for allowing Garrett to participate in this fight. I loved that he gave Garrett the opportunity. It's called the "dignity of risk" - “Dignity of risk” means respecting each individual’s autonomy and self-determination (or “dignity”) to make choices for himself or herself. Garrett trained for the fight and wanted to get in the ring; they found a fighter with the same height and build who agreed to fight him.

Garrett's reaction time isn't as quick as his opponent; I liked that his opponent didn't take advantage of that situation. He legitimately landed some punches and slams on Garrett ... as did Garrett to his opponent.

I thought the ending was a great wrap-up showing Garrett's journey of self-awareness and self-acceptance.

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Making the Pizza

Monday, 15 April 2013

The kids were going to Friday Fun Night at a local church and pizza was being served. On his way home from work Joe stopped by the commissary to pick up a frozen, gluten-free pizza for Kayla.

When he got home he put the pizza in the toaster-oven.

A few minutes later Kayla came downstairs and saw the toaster-oven was on and the pizza box sitting on the counter. She got excited and said to me, "Mom you making my pizza?!"

Since Joe was actually the one who put it in the toaster oven I just said to her "No, I'm not making your pizza."

She held up the pizza box, emphatically pointed at it and said, "YES! This pizza right here. That's my pizza! You making me pizza."

With a smile on my face, I again said, "No, I'm not making your pizza."

She looked at me for a few seconds, then she looked at Joe who was standing quietly in the kitchen, and exclaimed, "DAD! YOU making my pizza!!" and she laughed.

Typing this out, and reading it, I realize how absolutely insignificant that conversation sounds. But I kept saying to Joe that I loved that she 'got it.' She got that I was making a little joke; that I wasn't denying that pizza was being made, just that it wasn't me making her pizza.

I don't know if that was analytical or critical thinking skills, but whatever it was, it was one of those moments that, as a parent of a child with an intellectual disability, you celebrate. Even if the celebration was small - a knowing look between spouses, a smile left in your heart. 

 

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Modern Families

Friday, 8 March 2013

Katie Couric had a segment on modern families and what they look like today. One of the families profiled were Bill and Shelley - the couple I blogged about that were the subject of the article No Disability Could Keep Them Apart from the Washington Post.

Bill gave a passionate statement at the end of the video. I loved what he had to say; and I love that it came directly from a person with a disability.

"Yes, of course we have challenges. But the real challenge, the real disability, is the ignorance, the uneducated. So if you see people w/disabilities like us, or other disabilities, keep your eyes open, keep your ears open, then you'll give them the respect they so (richly?) need." 

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Use Another Word

Wednesday, 6 March 2013

Today is the annual Spread the Word to End the Word campaign ... where advocates everywhere are asking people to take the pledge to eliminate the derogatory use of the words retarded/retard from every day speech and promote the inclusion and acceptance of people with intellectual disabilities.

The word is used so carelessly and in just about every example of when it's used; it isn't even the right word for that situation. It doesn't make any sense to use the word as a catch-all for every possible negative scenario.

It makes the person sound uneducated; because really? Something was retarded? You don't think there were a number of other words that fit better in your sentence? Isn't your vocabulary a little more expansive than throwing the word retarded/retard around in your conversations?

I'm re-sharing the post I did last year: An Open Letter. There isn't anything more I could say about the subject.

It's time to find another word to use.

 

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A Beautiful Love Story

Wednesday, 13 February 2013

There was a story in the Washington Post last week about love lost and found again. This beautiful love story is about a couple who each have a disability - When Bill Met Shelley: No Disability Could Keep Them Apart.

Shelley says, of the first time they met, “You know that scene in ‘Dirty Dancing’ where Baby meets Johnny for the first time? It was kind of like that.”

Like any couple they've had to learn how to live with someone else. Bill had been living with a couple of guys in an apartment when he and Shelley reconnected. Two years later they moved in together and Bill said, “Getting used to living with Shel was a big trial for me, ... It was a big transition for me, because I was living with guys. Guys watch sports. Guys watch TV. What guys do is what guys do. They watch TV in their underwear. Now I know to keep my pants on.” Haha! Finding their way together.

As I imagine is true with any love story, there are some challenges and sadness too.

They had a commitment ceremony with a priest and rabbi, but they are not legally married. As much as they are in love with each other and want to be married, they can't because Shelley's health insurance could be jeopardized if she married. But for all who were involved, their ceremony was considered an official wedding.

Then there is the topic of children. Bill and Shelley decided that Bill would have a vasectomy. (Side note: I've always read that males with Down syndrome are sterile and can't have children. I wondered if Bill had an analysis done before undergoing this procedure.)

Bill does mourn the loss of children they'll never have. “I’m such a loving person,” he says,... “I have so much love to give. Shelley is such a loving person. And fatherhood is such a big thing to me.” He knows they are a family though, the two of them, and says the best part is to “live with a woman who I’ve loved ever since I met her.”

I thought this was such a well-written article about the intricacies of being in, and maintaining, a relationship when you have a disability. A friend hit the nail on the head when she described the writer's tone as 'respectful.' I agree - it was written with respect for Bill and Shelley as individuals, and as a couple.

I wish them much happiness in the years to come.


  

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Paper Clouds Apparel

Saturday, 26 January 2013

Paper Cloud Apparel's founder - Robert Thornton - started his company after a visit home and seeing a piece of child's artwork on his mom's fridge. His mom was a bus driver for kids with special needs and one girl on her route gave his mom a picture she drew. Robert thought the characters were great and belonged on a t-shirt.

Paper Cloud Apparel takes artwork created by individuals with disabilities and puts it on eco- and sensory-friendly bamboo clothing, prints, and greeting cards.

50% of the profit from every product sold is given back to the disability organization that donated the art.

Their mission doesn't end there though - Paper Cloud Apparel also employs individuals with disabilities.

Every two weeks they team up with a different disability organization - the current organization highlighted is the International Down Syndrome Coalition for Life.The artists currently featured for this campaign both have Down syndrome and are both 13-yrs old. Alexa created the 'love rainbow' art and Noah created the 'guitar' art. This current campaign runs through Feb 4th.

Upcoming organizations are as follows:
Feb 4-18: Art of Autism
Feb 18-Mar 4: Easter Seals Crossroads
Mar 4-18: A Total Approach
Mar 18-Apr 1: Autism Speaks

 

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We Happy Few

Thursday, 17 January 2013

Matt Walker, an actor and filmmaker in Sydney and Los Angeles, has an older brother who has Fragile X.

He is directing a feature length documentary called We Happy Few. The film is about "giving a deeply personal insight into the intellectually disabled community in today's fast paced world – filled with inspiring first-hand accounts of achievements (against all odds) and frank discussions on the struggles facing this community today and into the future."

A couple of quotes from the trailer: "At the end of the day there are over 650 million people around the world - and the number is growing every single day - with people with disabilities globally that deserve to have their stories told accurately, fairly, realistically, and whenever possible, told by a person with a disability."

And this one from Gail Williamson (director of Down Syndrome In Arts And Media) “There is a lack of availability of images, and the more images that are put out there the more acceptance overall in our world.”

Just watching this short, almost-six-minutes trailer leaves me wanting to see more; to see the rest of the story. I hope Matt is able to see his vision through to the full documentary.

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Inclusive Education

Wednesday, 5 December 2012

I'm still on a quest for making inclusive education successfully happen for Kayla. We changed schools this year and have her at her neighborhood school; and I still feel confident that was the right decision to make. She should be at her neighborhood school riding the same bus as the other kids on our street.

However, just switching schools and getting the school to agree with her placement in the general education 3rd grade classroom doesn't mean things are going as well as I'd like them to be, or that I hoped they would be.

It's hard to be the first one to ask for something of this magnitude to be done differently. It's hard asking not just a school, but the school district, to do things differently. It's hard when the mindset has been one way for so long. It's hard when it's just you (and your spouse) who are the only ones on your child's team who feel like this can work.

There is a difference between inclusion and mainstream. Mainstream is when the child with a disability is in a special education as their placement; that is their main classroom ... and they get to be with their non-disabled peers in the regular classroom during certain times. Usually those times are fine arts, lunch, recess, and in most (I think) cases, history (or social studies) and science. The bulk of the time spent on the core courses happens with math and language arts; so the bulk of the time is in the spec ed room with the student visiting the general ed classroom.

We tried that in the last school. She was in the special ed classroom for the bulk of instruction in math and English Language Arts. We don't feel like she made much progress in that setting. For us, the biggest issue with that setting is she wasn't on the same general education curriculum as the students in the general ed classroom.

I'm not delusional about Kayla's present levels; I know she isn't on a third grade level - I know there are many obstacles she faces in the 3rd grade class. But I also know it's a misconception that students with disabilities need to be at or near grade level to be in the general ed class. With the proper supports and modifications she can be in the classroom engaging in, participating in, and making progress in the general education curriculum.

The Maryland Coalition for Inclusive Education has several great resources on their site including this one on Inclusive Education Research and Practice: Inclusion Works! In 2004 research showed “No studies conducted since the late 1970’s have shown an academic advantage for students with intellectual and other developmental disabilities educated in separate settings.” 

If no studies having shown an academic advantage for students with intellectual disabilities educated in separate settings then why are the vast majority of schools still educating students with disabilities this way? I know IDEA states there has to be a continuum of services offered; however these separate settings should not be where the majority of students with disabilities are educated.

It's not enough for Kayla's placement to be in the general ed classroom with no real change to how things are done in this district. I'd like to see a true willingness to think outside the box; I'd like to see the schools here make changes to move towards a more inclusive educational platform instead of automatically placing students with disabilities in 1 of 3 types of special ed classroom - Mild, Moderate, and Severe (but more commonly referred to as they have been for years here before the classification was changed - Educable, Trainable, and Profound.); I'd like to see the district bring in inclusion experts and have trainings for the general education teachers because its not entirely fair to them to have a child with an intellectual disability in their class and they haven't received any special education training. I'd like to see collaborative planning between special education teachers and general education teachers on how to make the general education curriculum accessible for those with disabilities.

I'm not asking for too much, am I? Ha! Seriously, I wish I knew how to get some true changes to how students with disabilities are educated here, but I don't know how to make those changes come about.

In the meantime we prepare for yet another IEP where I leave feeling defeated and wondering if I really know what is in the best interest for Kayla. I know what I want for her, but so far I feel like I've failed in her educational experience. It just shouldn't be this hard; parents shouldn't still have to be advocating for the least restrictive environment to be the general education setting when study after study after study, for years and years, show more positive gains and academic progress for students with disabilities educated in the general education classroom.

 

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Day 10 Giveaway: Aspire Coffeeworks

Tuesday, 16 October 2012

Today's giveaway comes from Aspire Coffeeworks - a division of Aspire, a non-profit leader in services for children and adults with developmental disabilities in Illinois. Their goal is to help people with developmental disabilities achieve their highest potential where they live, learn, work, or play.

Aspire Coffeeworks partnered with Metropolis Coffee Company, one of the nation's top artisan coffee roasters. Employees from Aspire, (who have disabilities) work alongside the Metropolis Coffee Company employees to grind, package, and ship the orders. Each bag of coffee is roasted to order, dated, and packaged to ship directly to your home.

About the coffee: Our coffee is craft-roasted by some of the nation's most talked-about coffee experts. Using vintage German roasting equipment, Metropolis Coffee's roasters are artists who carefully craft the flavor of each batch. All of the coffee blends are certified organic and carry the Fair Trade Logo.

Not only are people with Down syndrome and other disabilities being employed through this venture, but 100% of proceeds from their products help fund Aspire's programs for children and adults with disabilities. Win-win!

Watch the video of the partnership:

Aspire Coffeeworks is donating a bag of coffee to this giveaway. You can choose Whole Bean or Ground and choose between Signature Blend, Bold, Decaf, and Espresso.

To enter leave a comment on this post stating which coffee flavor you would like to have, and then click on the +1 Do It link on the widget.

To earn more entries, and to spread the word about Aspire Coffeeworks, you can like their Facebook page and Tweet about the giveaway. You can do each of those things directly on the Rafflecopter widget.

a Rafflecopter giveaway

(Refer back to 21 Days of Giveaways throughout the month to see all of the giveaways.)


 

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21 Days of Giveaways

Tuesday, 2 October 2012

I wanted to do something a little different for 31 for 21 this year. I wanted to do something to signify, honor, and incorporate "21."

21 is such a big part of Down syndrome since it is the three copies of the 21st chromosome that identifies people as having Trisomy 21.

World Down Syndrome Day is observed, and celebrated the world over, on March 21st: 3/21.

I wanted to do something to try and capture the whole essence of 21. What it means to have that extra chromosome and the possibilities that are within reach - if you only believe.

I am so excited to announce the "21 Days of Giveaways" in the midst of 31 for 21.

And it is exactly what it sounds like. There will be 21 days of giveaways on my blog throughout the month of Oct.

These giveaways will absolutely be connected to Down syndrome, the Down syndrome community, and the self-advocates.

The giveaways will include books about Down syndrome, products from businesses that employ people with Down syndrome (and other disabilities), and most importantly, I think, are the products made by people with Down syndrome. People with Down syndrome who have a talent and have turned that talent into an entrepreneurship. I want to showcase the self-advocates who have their own businesses and bring awareness to the amazing things people with Down syndrome are doing; are capable of doing.

The giveaways will run all month long, so people can have time to go through them and enter all the ones they are interested in. The contest will end on Nov 6 to allow for more time for the giveaways that are posted at the end of the month.

I will post the links for each of the giveaways on this post, and conversely, link this post on all of the giveaway posts, so all the giveaways will be linked in one place to easily go through all of them.

I hope you will see the vision people with Down syndrome have. I hope you will see the possibilities people with Down syndrome have. I hope you will become aware of books not yet read, and products not yet seen. I hope you will be inspired by the giveaways, and the people/businesses they come from. I hope you will share the giveaways bringing more attention to all the positive connections with, and about, Down syndrome.

Winners are announced below and on the individual posts...congrats to everyone!

Day 1: Gifts: Mothers Reflect on how Children With Down Syndrome Enrich Their Lives & Gifts: Volume II : Allison D., Kristi W.
Day 2: I Love My Life T-shirt : Jessica H., Lisa G.
Day 3: Miss Katie's Kreations : April N., Deborah T.
Day 4: Lupita Cano : Christine
Day 5: Just Cate : Stacey R., Karyn S.
Day 6: Group Hug Apparel T-shirt: Lisa T.
Day 7: Kardz By Kenz: April N.
Day 8: Meet Annie : Mary P.
Day 9: Down Syndrome Footprint: Rebecca B.
Day 10: Aspire Coffeeworks: Dena M.
Day 11: The Shape of the Eye: C
Day 12: NDSS 3:21 T-ShirtAngie W.
Day 13: Common Threads: Celebrating Life With Down Syndrome : April N.
Day 14: Corbin-Smiles Artwork: Vanessa B.
Day 15: Monica & David documentary DVD : Vanessa B.
Day 16: Furnace Hills Coffee : Marjorie T.
Day 17: Taurini Designs: Jessie H.
Day 18: The Politics of Down Syndrome : Allison C.
Day 19: JEllen's House of Fabric pillowcase : Sabrina S.
Day 20: From Grief to Celebration : Chriss G.
Day 21: Love on the 21st Chromosome t-shirt: Rebecca B., Angie W., Kay F., Nicole M.


 

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Kicking Off 31 for 21

Monday, 1 October 2012

Welcome to my blog!
Welcome to National Down Syndrome Awareness Month!
Welcome to the 31 for 21 Blog Challenge!

It's not too late to sign up if you want to participate! Just go to the 31 for 21 post and sign up. You can also see the list of all the other great bloggers who are participating ... join in with the challenge of blogging every day in Oct (31) for Down syndrome (Trisomy 21/T21) awareness.

You don't have to blog about Down syndrome every day in Oct, but here are some topics (thanks for the help compiling the list, Beth!) to get you thinking about things you could blog about:


- myths about Down syndrome
- sign language and Ds
- people first language
- favorite bloggers/celeb who have a child with Ds
- photos from Buddy Walks
- what is Ds? (Non-disjunction, Mosaic, Translocation)
- a day in your life
- school/therapy
- your child's strengths
- your fears, your hopes, your expectations
- the r word
- siblings, only-child, decision to have a child(ren) after your child w/Ds was born
- where do you find your info on Ds?
- current news articles on Ds (materniT21, Alzheimer's connection, prenatal testing)
- birth stories/adoption stories
- did you find out pre-natally, post-natally, or suspected during pregnancy but declined amnio (like our story)
- lists of '21' things; ie about your child, child's favorite things, things your child says/signs, milestones/accomplishments
- facts and stereotypes about Ds
- favorite books on Ds
- characteristics
- favorite online resources
- favorite apps
- additional diagnosis (autism, sensory processing disorder, ADHD, Celiac Disease)
- medical issues (sleep apnea, AAI, heart surgery)
- Down syndrome and cancer
- if you knew then what you know now
- if you could go back at time of diagnosis what would you tell yourself
- what fears or expectations did you have at diagnosis that did, or didn't, come true

Hopefully that list can get the creative juices flowing!

Stay tuned for tomorrow when I unveil the "21 Days of Giveaways!"
 
 

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Down Syndrome, Abortion, Eugenics

Thursday, 7 June 2012

Two recent blog posts have been on my mind over the past several days. I have too much to say to leave my thoughts in a comment section, thus my own blog post.

The posts were a bit hard to read as I felt they were brash and demeaning towards individuals with Down syndrome ... and of course I have a completely different point of view since I'm raising a child with Down syndrome.

Her argument is that abortion based on a diagnosis of Down syndrome isn't eugenics and those who claim it is are ignorant to the definition of what eugenics is. She says that eugenics is, 'in short...the science of improving the human population through controlled breeding." (That definition is in the The American Heritage Stedman's Medical Dictionary.) Since it is a women's choice to have an abortion and it isn't being systematically forced on them via the government, then it isn't eugenics.

I would take it a step further and say an acceptable broader reach of that definition - improving the human population - also means the elimination of, or prevention of, people with disabilities ala Peter Singer. "It endorses selection according to desirable and undesirable genetic traits, and favors the elimination of the latter."

I agree that abortion is a woman's choice. But beyond that I'll argue that there is a difference in having an abortion because you don't want a baby and having an abortion because the baby you wanted and planned to have was diagnosed with Down syndrome. In that case you're not aborting because it wasn't the right time to have a baby, but instead aborting the baby you planned to have because of a genetic condition. Yes, I know it's still the woman's choice to continue the pregnancy after receiving such a diagnosis, but there is another option - adoption.

There doesn't have to be the widespread encouragement that the 'best' thing to do is abort a baby with Down syndrome. That is the systematic elimination of people with Down syndrome because of their genetic make-up and continued misinformation of what life is actually like for a person with Down syndrome, or raising a child with Down syndrome. In the broader sense of the definition that falls under eugenics. One only has to read the article about Denmark wanting to be a Down-syndrome free country to see this is happening.

The majority of information given from the medical community is negative and a whole bunch of potential medical problems. The entire life of a person with Down syndrome is reduced to all the medical complications they might encounter. What about all the other aspects of their lives? There is more to life than just what you might have to deal with medically.

The above blog posts continues to perpetuate the negative as well with this "There are a lot of complications and repercussions in embracing this condition as a normal part of the human gene pool. Some conditions are at higher risk with this disorder such as infertility, epilepsy, Alzheimer's disease, heart disease, cancers of several kinds, thyroid disorders, gastrointestinal issues, celiac disease, Hirschsprung's disease, deafness, blindness, cataracts, spinal cord compression and other issues."

All of those conditions are NOT unique to Down syndrome and they occur in the rest of the human gene pool as well. You most certainly can have any of those conditions and NOT have Down syndrome. Having epilepsy and Alzheimer's disease, heart disease, and cancer etc is not limited to individuals with Down syndrome. Any one of us could develop any of those medical conditions so how is it fair to say those with Ds are at a higher risk (and just how much higher is the risk? For some of those conditions it could be a small, slightly increased risk) for those conditions and should therefore be eliminated? You could be at higher risk for heart disease because of your own family history, so should you have been eliminated? Should you not have children of your own because they might get heart disease? You can't predict what medical conditions a person with Down syndrome might develop.


And a piece of information that is usually left out is that those with Down syndrome who are diagnosed with cancer have a higher incidence of surviving cancer.

She continues with the 'dangers of carrying a child afflicted by this condition' and among the lists of these dangers are: hearing loss, frequent ear infections, hypothyroidism, cervical spine instability, visual impairment, sleep apnea, obesity, constipation, and on and on.

"Dangers" seems a bit dramatic to me. Certainly a cervical spine instability is dangerous to the child if not detected and corrected (which is why the medical guidelines for Down syndrome include having an xray done to check for AAI). We've come a long way with medical care and all of those 'dangers' can be helped by the medical establishments. And again - each and every one of those problems can happen in the typical population as well ... they are NOT unique only to people with Down syndrome.

Despite all the negative information given with a Down syndrome diagnosis, and misconception that those with Ds and their families 'suffer' studies show the opposite to be true. Those with Down syndrome are happy with their lives and are not suffering.

Down syndrome is a naturally-occurring part of the genetic make-up that has occurred before it was ever identified as such. Who are we to say that it is 'abnormal' to be born with 3 21st chromosomes instead of 2? Who decided to say that it can't happen both ways (as it obviously does). It is just a part of how you're created - blond hair, curly hair, freckles, Trisomy 21.  

In her comment section she goes on to say, "Down's Syndrome will (hopefully) eventually be another one of the crippling, hindering conditions of mankind eliminated from our genome. How is that not considered eugenics? Eliminate an entire group of human beings from 'our genome' because they have 3 chromosomes instead of two? People with Down syndrome are very much the same part of 'our genome' and throughout history, as a whole, have done nothing to others to deserve such vile hatred and contempt for their mere existence. They also do not live with a crippling, hindering condition.

It continues with, "Ultimately, if more people were better educated they would see that eliminating something so horrid from our gene pool would only benefit the future generations of the human race. It's a non-arguable topic, to be quite honest." Again, this thought process is eugenics because it's based on benefiting and bettering the human race by targeting and eliminating a group of people based on what? A medical condition. A syndrome. They are targeted before birth for elimination.


I'm trying not to take the description of 'so horrid' personally, but honestly, there is nothing 'horrid' in my beautiful daughter. I find the views and opinions on those blog posts utterly horrid and close-minded. And I will be forever thankful that a child with 3 copies of the 21st chromosome was created in my womb and not the writer's; because if it were reversed that child wouldn't be here today to fully enjoy life and all it has to offer. 


 

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School Decisions

Monday, 28 May 2012

If you have a school-age child with special needs then you know what this time of year typically represents - the IEP (Individualized Education Plan) meeting. I have to say, these meetings can be down right exhausting.




We are getting ready to have our 3rd meeting regarding Kayla's placement for the next school year.



A brief background on how school has looked for Kayla the past 2 years. She is zoned for school A. When we attended our first meeting there we were told that "School B is the school kids with mild mental disabilities attend when School A is their home school, because not all schools in the district have the program for students with mild mental disabilities."

That shouldn't be how students are placed; they shouldn't be grouped together based on their disability level and then have it pre-determined where they will attend school because of the 'program' they are being placed in. IDEA states that students with disabilities should be placed in a general education classroom in the school they would attend if they didn't have a disability, with supports, accommodations, and modifications to the maximum extent possible.

We voiced our desires for having Kayla attend School A, but for reasons I'm not getting in to for this post (long story) she goes to School B.


In 1st grade she went to the general ed (GE) classroom for most of her subjects except for language arts (special ed/self-contained room) - which is a pretty good chunk of time. Her time being included in GE classes was a little more than half her day. For her IEP last year (2nd grade) it was recommended that she have language arts and math in the sped room. I wasn't totally on board with that, but by the end of the meeting relented while stating my goal was to have her gradually be in the GE class for more and more time.

Based on the change to having math in the sped room this made her time in GE classrooms less than 40% of her day, something that bothered me, but, yes I agreed to, because maybe it was best for Kayla. You don't know what works until you try it.


For the last 2 months it was agreed to have Kayla go to the GE classroom for 30 min during their phonic/spelling time (she's had no spelling in the 1st/2nd grade sped room - they don't work on that until they go to the 3rd-5th sped room). Since going to the GE room she's now been exposed to, and working on the STEPS program like her typical peers are doing. She learned to identify 14 of 24 sounds from the 'green' set. Spelling has been a bit of a struggle, but she has learned to spell a few words (palace, penny, button as an example) but she's able to differentiate between the correct and incorrect spelling of the words on her list. She's also able to read the words on her spelling list now - words she wasn't exposed to, or learning to read, in the sped room.

I've tried it this way for 2 years and now I would like some change. We're requesting her LRE (Least Restrictive Placement) be the GE classrooms. I read studies (like the one I posted about here) showing that kids with disabilities who are taught with their typically-developing peers in the GE classroom do better overall on math and reading tests. I hear examples from so many other families across the country who have their child in GE classroom with accommodations and modifications and it's working successfully.


I'm not denying special education services because that's exactly what special education is - a service, not a place. I'm just asking for those services to take place in the GE classroom with collaboration between sped/GE teachers and therapists. I'm not opposed to ANY pull out services at all, I would agree to having some extra help in math and reading in a resource room like the rest of the student body has access to. 


It was suggested if we want to put her in GE classes full-time, as her LRE, that it might be better to repeat 2nd grade and do it that way. I can understand, to a certain point, the pros of doing it that way ... but I'm not convinced that's the best thing to do at this time. Kayla is probably not going to 'catch up' to typical peers on grade level, but that isn't the point to having her in GE classes. The point is to have access to the general education curriculum alongside her peers ... something she didn't have access to in the sped room.


It's all so overwhelming to think about. These seem to be the choices/decisions we have to make:

- Repeat 2nd grade with LRE being GE classrooms
- Continue to 3rd grade with going to a 2nd grade math class
- Continue to 3rd grade with getting some resource help for math and language arts (how much time is TBD)
- Then there is the possible discussion of transferring schools and having her at her home school

My other issue with her not being at her home school is if she continues at School B for 1st-5th grades she will not be at the same middle school as those kids will go to - because they will be zoned for a completely different middle school than the one she would be zoned for. So she would go to a middle school where she doesn't know any of the kids.

It's a common refrain to hear "You're the parent, you know what's best for your child." and "You'll make the best/right decision for your child because you know her best." But I'm finding that difficult to believe. I don't feel like I've made the best decisions over the last two years and in fact feel like I've failed her in my lack of adequate advocating skills.

And how can you truly know what the right decision is to make, especially when there are more than one paths to chose from? You can't know what is the right decision because you can't go back and see what it would be like if you had chosen something else. I thought I did right by her on last year's IEP, but at the end of this school year I don't feel like I did make the right choices.


And what I want for this school year might not end up being the right choice either, but Kayla deserves to be given a chance at an education in the GE classroom. She deserves a chance to have the right supports and services to make it successful. Maybe it won't work out for her. Maybe she really does need a self-contained room for the core subjects, but it's successful for so many other students, and we won't know until we give it a try.

So many colleges are now offering students with disabilities a chance and those colleges are fully inclusive. From what I've read about most programs to date - none offer a chance at going to college with the understanding that the students with disabilities will be educated in a self-contained room in college. So how can we be expected to prepare our children with disabilities for the possibility of going to college - and expect them to succeed there - if they aren't being prepared for it during the elementary, middle, and high school years? How can I expect her to make the jump from self-contained rooms throughout her school years, to a fully inclusive college experience?

I'm not saying it's going to be easy, change usually isn't, especially in a district that doesn't typically do things this way, but change can be a good thing too.

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Assistive Technology

Friday, 20 April 2012

I'm going through one of those 'if I only knew then what I know now' moments.

I understand the basic concept of the Individualized Education Plan (IEP) as it pertains to Kayla and school. I understood what it was for, how they (mostly) work, who attends them, what we do in the meetings, what is discussed in the IEP. I've skimmed over info from Wrightslaw and have attended a workshop or two. However, it still wasn't enough. I haven't been proactive enough. I haven't researched enough. And I feel like I have failed Kayla, to some degree, where school is concerned.

Trying to make some changes now to rectify that.

I am reading the book Wrightslaw: All About IEPs and finding so much useful information. The topic on Assistive Technology has been particularly interesting.

Up until now I thought of assistive technology (AT) as (mostly) something children used to communicate with - ie if they couldn't speak, or didn't have enough speech intelligibility. Kayla talks. A lot. I think most of it is understandable, especially in context. So ... I never thought much about AT for her. But AT is defined as 'any item, piece of equipment, or product system, whether acquired commercially, off the shelf, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of a child with a disability."

Then there was the piece on the Henderson Inclusion school that I blogged about. In it they show a 2nd grade student's comprehension of a story he'd read writing longhand. He wrote 2 short sentences. He has trouble with spelling and handwriting. His response wasn't a 2nd grade benchmark. But then he showed his comprehension of another story by using a computer. He uses a text reader and a word-prompting software to help him produce something more on grade level. Hearing that I thought how much Kayla could use something like that. Reading and writing are laborious for her. It seems to take 'forever' for her to get through reading a short site-word book. I think she actually needs books with NO pictures because she stops after reading 2 or 3 words, looks around the picture, has to be prompted to go back to reading the sentence. I think by the time she finishes the sentence, she's forgot what she's even read.

So, back to the section on AT I've been reading. I've discovered it encompasses all sorts of tools that can help a child be successful in school, but more importantly, help the student access the general education curriculum.

- AT helps children use their strengths to compensate or 'work around' weaknesses caused by the disability.
- Law requires schools use AT devices and services to maximize accessibility for children with disabilities.
- Instead of the child becoming dependent on parents, teachers, and peers for help with schoolwork, AT helps the child be more confident and independent.

Here is an abbreviated list of when AT is appropriate:
- allows a child to perform functions that can't be achieved by other means
- increases the child's endurance or ability to complete tasks that are too laborious to be attempted on a routine basis
- allows the child to concentrate on learning, not mechanical tasks
- provides greater access to the general education curriculum
- allows the child to participate in the least restrictive environment

In case there is some concern that using an AT device (such as a calculator) is a crutch here is the answer to that in the book, "If a child needs assistive technology to have access to the general curriculum and benefit from education, it is not a crutch. A child may depend on a device to perform, not allowing a child to use the device will prevent the child from learning and receiving an appropriate education. If you need glasses to read should you be forbidden from using glasses to read?"

So now I've begun scoping the internet for websites that give examples of AT and how they're used. This one seems to have a lot of great information.

I've also requested that Kayla have an AT evaluation; I think there are tools out there that can help her go so much further in her education.
"For people without disabilities, technology makes things easier. For people with disabilities, technology makes things possible." Dr. Katherine Seelman

 

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Just One Question

Sunday, 18 March 2012

35 adults were developmental disabilities were all asked the same question:

"If you could change one thing about yourself, what would it be?"

I loved this video, watching their reactions, seeing them really think about this question, and their answers. So many of them with such wise answers.

If this question was asked to 35 typical adults how quick would we be to respond? In the snap of a finger 'we' would probably have any number of things to name that we would change.

Their answers could teach so many of us a lesson. It's well worth the 8 minutes to watch it. Trust me.

The film's production crew includes 8 people with developmental disabilities.



Please take a moment to leave a comment on my Do Something Extra post. For every comment I will donate $1 to the Plus 15 campaign on Mar 21 for World Down Syndrome Day (I really thought I would be donating more than $12 :) !) All donations that day will be matched 3:1. I'm also having a giveaway on that post as well!

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