What I envision...

I love my life.

I am sitting here... in the midst of my family... cracking up hysterically while watching them play hide-and-seek. One, two, three, four... ready or not, here I come! I believe the rules of the game have officially been changed... that, and the quirks of young children (namely: Chicky) playing hide-and-seek... well, it is one of those moments that makes you want to pick up your kids and smooch them til the cows come home.

• Chicky counting... A, B, C, D... and turning me to ask, "Momma, where Daddy? Maymay? Where do?" (pronounced dough)
• Chicky seems to think that you are supposed to hide in the same place every.time.you.hide. Under the covers or behind a curtain... every.time... all the while thinking she is being just as tricky as the first time she hid there.
• When Chicky is hiding... and she hears the ready or not holler... she giggles. Hysterically. And she greets the seeker from her hiding place... "Hi Daddy!" Doesn't make for hard finding... but most certainly makes for lots of heart swells. 

::

One of my guilty little pleasures is oggling (is that a word?) over crafty, home design blogs. Some people are so freakin talented. I love crafty, do-it-yourself type projects... but I usually need to pull inspiration from somewhere.

I have a problem with meals. I mean... I have great intentions... I buy all the ingredients... but then let them go to waste in my pantry. Our days are busy and dinner time often becomes a grab-what-you-can meal... rather than that of a good home cooked meal. What I envision in my head is... "Please pass the potatoes. How was your day, dear? Don't forget to eat your vegetable. What happened at school today?"

Yeahhh ... haha.

But now... now is the time, dammit. I was scrolling through a blog that I follow... crafty girl... mom of a little boy with autism... we talk therapy... we talk IEPs... we talk inclusion... love that. And I came across a menu planner board... seriously the answer to my problems. 

So I made me one.



Got me a cheap little framed cork board from Michaels... don't forget to use a coupon --> cheap. Picked up some scrapbook paper and found these little clothesline clips at Walmart --> freakin cute.



Bought me a can of brown spray paint... sprayed and rusticized (ok... that really is not a word) the frame, the clothesline clips and the thumb tacks. Found these recipe cards at Target years ago... they were meant for a bridal shower gift. Oops... guess that never happened.



Mounted my scrapbook paper on my cork board using acid free scrapbook glue. Went to my handy dandy computer... printed off some menu items and my days of the week... mounted them on acid free scrapbook paper... wa la.



There she blows... err something. I am thinking the wall is a bit bare... and perhaps I should have made it a wee bit bigger... but whatever... nothing some accent items can't take care of. I have a menu planner and we have had our sit-down-and-pass-the-potato-dinners almost every night so far.

Love that.

(tutorial here)

::



We are anxious for warmer weather to settle in for the long haul... all the while taking advantage of the random sunshine that we have had. Our grass needs to green, our bushes need to bloom.





So... I am wondering... is it just my kids or are holes in the knees some sort of you know... new thing? Haha. Mason has holes in the knees of every pair of jeans he owns... literally.every.pair. And Nika... she has them too.





What on earth do my children do to their jeans? Momma gonna go broke replacing these things. On second thought... shorts are right around the corner... holes will have to do. I mean... they would just ruin the new jeans too, no?

Sigh.

::

More to come on inclusion, IEPs, labels... I have to show you the girls' identification bracelets I got and bounce more ideas on those... oh, and my Valentine's gift that I never posted about because I was in a funk over my failed FET cycle... it is coming... you know, in my spare time... oh, and a giveaway I need to get put up.

But for now... I need to go finish putting away my Christmas decorations... and my Valentine's decorations... and I need to do the dishes... and go through my kids clothes... and organize our storage area... and wash my dog... and decide on some new decor... and...

Inclusion and Access to the General Education Curriculum

Being the parent of a child with special needs ... you never stop learning or advocating. I understand that you continue to learn and advocate for any child, but doing so for a child with special needs takes it to another level. It can definitely be exhausting, but you have got to be on top of your game.

I attended a seminar yesterday put on by Ricki Sabia, Associate Director of NDSS National Policy Center. It was very good ... and I am transferring the powerpoint slides here because I know there are lots of mommas (and poppas) out there interested in what she had to say. There is a lot of information ... make sure you take time to get through it all and focus on UDL.

Academic Benefits of Inclusion

(source)

• Students earned higher grades and higher scores on standarized tests.
• Greater progress in reading and math when compared to students educated in resource setttings.
• Higher high school completion rates and college attendance.
• And for students without disabilities: Achievement increased in at least one academic area. In other words, students without disabilities do benefit from having students with disabilities in their classroom.

Social Benefits of Inclusion for students with disabilities

• Students with disabilities in general education classes had more friends.
• Teacher ratings showed improved social skills.
• Students do not demonstrate high levels of loneliness.

Social Benefits of Inclusion for students without disabilities

• Improved self concept.
• Reduced fear of human differences.
• Increased tolerance.
• Improved social emotional growth.
• Improved personal conduct.
• Positive outcomes for high school students who had interaction with students with disabilities.

Behavioral Benefits of Inclusion

• Higher level of engagement in school activities.
• Sharp decline in discipline referrals after shift to inclusive practices for students with and without disabilities.

Benefits of Inclusion for post school outcomes

• Increased employment rate and job skill level.
• More time in general education programs resulted in better postsecondary outcomes (click here for PSE opportunities for students with ID).

Each state's Department of Education should have an inclusion philosophy laid out for teachers. Ricki Sabia from NDSS recommends printing this off and presenting it in your IEP meeting ... if needed ... to show them (in times of resistance) their own philosophy that they should be adhering to.

Virginia DOE New Teacher PPT
Benefits of Effective Inclusive Practices for teachers
(source)

• Increases opportunities to develop professional learning communities through growth in knowledge sharing and skill development.
• Increases confidence in teaching students with diverse academic and social needs.
• Creates opportunities for better understanding of students with disabilities.
• Enhances knowledge about effective teaching and learning strategies.
• Increases level of content knowledge.
• Promotes understanding of the IEP process, content and implementation.
• Provides support systems among teachers.
• Provides opportunities to problem solve with another professional and receive additional support within the classroom.

What is not inclusion?

• Mainstreaming only for non-academics. In other words, if a child is in a regular classroom for only encore, physical education, recess, lunch ... that is not inclusion.
• An "inclusion class" without natural proportions of disabled students and peers.
• A seat in the general ed classroom without supports.
• Academic inclusion without social inclusion.
• An island within the room for the student and paraeducator.

Elements of Inclusion: Where Students Learn

• All students with disabilities are members of their neighborhood school.
• All students are assigned to age appropriate grades in heterogeneous classrooms.
• Student grouping are based on the individual interests and skills of all students, and not on disability labels.

Supports Students Receive

• Related services (i.e. speech therapy) are delivered in regular classroom settings and other school environments, when appropriate.
• Supports and services are provided in the classroom and coordinated with ongoing instruction.
• The provision of supports for students (instructional, curricular, behavioral, etc) is viewed as a school wide need.

Instructional Planning and Implementation

• Effective teaching strategies and differentiated instruction are used to meet the needs of every child.
• The general education instruction and curriculum is used as the base for accommodations and modifications to meet IEP goals.
• The instructional materials used for typical students are modified for assignments, homework and tests.

*Ricki Sabia from NDSS discussed setting broad academic goals in the IEP and then list under the "support" section that the child will get a list of modified curricular goals. The teacher must then set modified goals within the classroom for each academic area ... and these goals are what the child would work on, be tested on and be graded on.

Social Relationships

• Planned and structured activities are in place to promote social inclusion and friendship development.
• Students without disabilities are supported in welcoming students who have disabilities.

*Ricki Sabia from NDSS discussed the importance of putting a social network into place for your child. Enrolling them in extracurricular activities (i.e. dance, tball, cub scouts), encouraging them to manage sport teams if not at a skill level to play, etc. Facilitating this type of social interaction will be key in the acceptance of your child by his/her peers. 

Ricki talked about her son and how hard they worked to put these social relationships into place ... and was mainstreamed and happy. She also talked about a friend's child who was also mainstreamed, yet this boy did not have the social connections in place. He begged his parents to not mainstream him and to let him stay in the special education classroom, because he was not accepted by his peers in the student body. Just really makes you think about just how important the social relationships are in your child's education.

Staff Actions

• Collaboration between classroom teachers and special educator to implement IEP objectives in general ed lessons.
• Modifications/accommodations discussed by both general and special ed teachers.
• Supports planned to enable meaningful participation.
• School administrator(s) provide a vision and leadership and welcome all students into their school.

Who is included?
*LRE (Least restrictive environment): Congress states a strong preference for regular class.

• To the maximum extent appropriate, districts must ensure that children with disabilities are educated with children who are not disabled.
• Removal from the regular educational environment occurs only if the nature of severity of the disability is such that education in regular classes* with the use of supplementary aids and services cannot be achieved satisfactorily. This is important.
• The need for curricular modifications is not a reason to remove child from age appropriate regular classrooms. In other words, saying that a child cannot keep up with what his/her peers are learning in a regular classroom is not a reason to remove the child from the classroom. The curriculum must be modified and appropriate goals set ... within the classroom.

*Regular classes is not defined under federal law.

Hartmann 4th Circuit LRE Test (1997)
"Mainstreaming" is not required when ...

• A student with a disability would not receive educational benefit.
• Any marginal benefit from mainstreaming is significantly outweighed by benefits which feasibly can only be obtained in a separate setting.
• The student is a disruptive force in the classroom. This is exactly why behavior is so important in having your child mainstreamed. Start early in trying to teach your child what it means to sit and complete a task, as directed. One of the biggest problems parents have is in a regular classroom is when their child will not go with the flow of the classroom (i.e. sit in their seat, sit in circle time, etc).

Where are they included?
The child's placement ...

• is determined at least annually.
• is based on the child's IEP.
• is as close as possible to the child's home.

*Unless the IEP of a child with a disability requires some other arrangement, the child is educated in the school that he or she would attend if not disabled.

When are they included?
In addition to being included in the classroom ...

• Districts must ensure that each child with a disability participates with children who are not disabled in non-academic and extracurricular services and activities to the maximum extent appropriate to the needs of that child.
• Supplementary aides and services must be provided if needed to participate (i.e. peer support). I think this is important and is likely something we will need to advocate for.

How are they meaningfully included?

• Social inclusion
• Appropriate supplementary aides and services
• Differentiated instruction
• Modifications, accommodations and adaptations
• Universal Design for Learning

 Social Inclusion Tips

• Start inclusion as early as possible in the grade the child will stay in.
• Staff training and IEP goal for social inclusion.
• Disability awareness for students.
• Info for classmates parents.
• A few transitional friends in class every year.
• Full participation in class, school activities and community activities.

Differentiated Instruction

• Tiered products/demonstrations (different levels of difficulty built-in).
• Varied modes of expression/demonstration.
• Group projects.
• Graduated rubics (levels of expectations).
• Multiple intelligences.
• Independent study.
• Contracts/negotiated criteria.

Accommodations

• Changes how a student gets information and demonstrates learning.
• Does not fundamentally change instructional level, content (standards) or performance criteria.

*Example: Less info on a page, calculator (if basic math is not being assessed).

Universal Design
Consider the needs of the broadest possible range of users from the beginning. ~Architect, Ron Mace
(materials here and here)

*Universal Design originated in architecture. An easy way to explain it is this ... when an architect designs a building, they design it to accommodate every person that may use it ... those on foot, those in a wheelchair, etc. The same premise should be used in the classroom.

Universal Design for Learning (UDL)

(click here for more)

• Design curriculum, materials, teaching methods and assessments to be accessible for all students (disabled and non-disabled, included or not).
• Provide multiple and flexible means for acquiring and expressing knowledge and engagement.
• Requires less adaptations, modifications and accommodations - less being "different".

UDL for Curriculum and Instructional Objectives
Goal: To provide optimal challenge for all students.

• Describe objectives in ways that students can understand them.
• Set objectives that every student can reach with appropriate tools and alternative paths to success.
• Set objectives that motivate students to learn (i.e. breakdown long term goals nto reachable objectives/benchmarks for all students).

UDL for Instructional Materials
Goal: To ensure equal access for all students.

• Provide a range of formats and media at different levels of complexity.
• Provide different materials for students to express what they know.
• Provide materials that keep students engaged.
• If possible, use customizable media and materials.

UDL for Teaching Methods
Goal: To provide effective instruction for all students.

• Provide multiple examples.
• Highlight critical features.
• Provide multiple media and formats.
• Explain background/context.
• Provide positive behavioral supports.

UDL for Assessments
Goal: To accurately measure progress for all students.

• Assessments should adjust to many individual differences.
• Assessments should focus the questions on exactly what teachers, districts and states are trying to find out (i.e. knowledge, skill or emotional development).

UDL Through the IEP: Goals and Materials

• Selection of curriculum goals and objectives per marking period.
• Homework and projects aligned to selected objectives.
• Alternate formats of textbooks, novels and supplemental materials to support instructional units.
• Use of computer for written assignments and for accessing digital text and other software.
• Preview of instructional materials.

UDL Through the IEP: Teaching Methods and Assessments

• Class discussion questions in yes/no or multiple choice format.
• Teacher training on technology used by the child.
• Teacher made assessments based on curriculum objectives, which are designed to eliminate barriers caused by the disability.
• Digital assessments.

UDL Task Force (federal level)

• Spearheaded by NDSS in 2006.
• Coalition of 41 national groups representing general education, special education and higher education interests.
• Promotes UDL in Federal policy and legislation and disseminates information on UDL.

Maryland Bill Template
(click here)

• Provides a narrative of steps taken by the Maryland Down syndrome Advocacy Coalition as its members worked on passing a UDL bill.
• Gives examples of hurdles and process faced in any legislative advocacy.
• Provides specific information and documents that can be used by other affiliates to move UDL forward in their state.

Key Steps in Template

• Develop a one page summary about UDL and why it is important.
• Get the word out through a website, listservs, brochure, webinars, etc.
• Form a statewide stakeholder coalition representing special, general and higher education interests.
• Enlist help of your state department of education.
• Find a legislative champion - work on drafting bill.
• Educate legislators and get co-sponsors.
• Ask for local school board support.
• Testing at hearings.
• Compromise.

Resources

• Wrightslaw
• Maryland Coalition for Inclusive Education
• General info on UDL (click here and here)
• National UDL Task Force
• UDL in Maryland
• UDL mentioned on VA DOE website

Dreaming of spring.

Mason (playing Pokemon): Mom! My name on Pokemon is Nate ... I have two friends named Nate.

Me: Yes, you do.

Mason: Yeah ... my friend Nate at school and then that other Nate ... how do I know him again?

Me: He is my friend Michelle's little boy. He has a little brother that has Down syndrome ... just like Chicky and Nika. His name is Matthew.

Mason (looks at me surprised): Well ... I didn't know he had a brother with Down syndrome! I mean ... I know Matthew is his brother but I didn't know he has Down syndrome.

Me: Yep, he does. 

*sniff*



Mason knows that his sisters have Down syndrome. He knows that sometimes it takes them longer to do certain things, or longer to talk or that sometimes they might not understand things like he does. But we have never really spent a lot of time discussing it ... it is just the way it is and we don't focus on their differences. And then listening to him try to pronounce the word syndrome makes it clear to me just how little we talk about it.

So sometimes life stands still and I wonder what he really thinks. I wonder to what level he understands. And then we have conversations like the one above that make me all emotional ... because I know he gets it. He just knows and it really does not matter what it is called. I know that is why he has the compassion that he has for his sisters. I know that is why he steps up to the plate to help them and to teach them in ways not typical of a 7 year old.

I know this. And it is awesome.

*

In the seven years that we have had kids ... we have somehow avoided Build-a-Bear. Until now. The kids all got Build-a-Bear gift cards from their grandparents for their birthdays ... so we went. It was pretty much the chaos we have avoided the past seven years ... but they Mason had so much fun.

And $150 later ... we left with three stuffed animals decked out in gear. Err ... at least Mason and Nika's animals were dressed. Payton ... well ... she is a n*dist and um ... so is her monkey.

Stinky, Rusky and AJ

*

Warmer weather is upon us and that means we have been enjoying the outdoors.



There's that damn jeep. Seriously though ... Payton loves that thing and she drives it like a maniac.







Dreaming of spring ... wishing it would stick around already.

Until it is you.

So I have had all these intentions of finishing a blog post that is half drafted about um ... not much. But then today rolled around ... and this momma was dealt a bit of a scare. And it isn't so much the scare that I want to focus on ... yet how to prevent this from happening again.

Because with these two chicks ... I know it is bound to happen.

Earlier this afternoon, I lost the girls. We were all outside playing ... they were riding around in their jeep and Mason was playing basketball. I ran inside to get my shoes and the next thing I know ... Mason came running in telling me something was seriously wrong.

The girls were missing. He had gone around the side of the house to get a ball and in that time ... they had driven off. He ran down the street where he thought they had gone ... nothing.

About 20 minutes later ... after sobbing, driving around our side streets like a maniac, sobbing some more, asking my neighbors for help, sobbing and getting the police involved ... they were found. They had made their way to a trail that runs back behind our houses ... ditched their jeep and were walking hand-in-hand.

With not a care in the world.

And this is my concern. I am really not a fan of characterizations, but seriously ... children with Down syndrome like to flee. We have to keep a close eye on the girls ... and Mason ... bless his heart ... is a great second set of eyes for us. And as much as it is not his job ... he really takes it upon himself and that is a huge help since ... you know, I don't have eyes in the back of my head.

The difference is that my girls will take off and just do their thang. They have no clue how far they are from home ... or that they are lost ... or that they have no clue how to find their way home. They have no sense of fear.

As I have been rehashing this in my mind today ... I have found myself comparing my girls to Mason. If Mason ever came close to getting lost when he was younger, he would shriek out in fear ... "Mom! Mom!" And the tears would flow.

My girls? Not so much. 

So I am carrying a conversation from facebook over here to my blog ... because I think it is important. I have seen these little electronic monitoring bracelets that some kids with special needs are wearing ... I just have not been sold.

Until now. Until it happens to you in the two seconds you looked away. Because that is how it happens. And you never think it will be you ... until it is you.

After we were reunited with the girls ... one of the police officers asked Payton her name. I had to explain to him that she can't say her name. My five year old cannot say her name. She cannot tell you who her parents are. She does not know what her address is. Nor does she even know what city she is from. I think that was hard for him to understand, but he was very nice about it.  

It just really made me think.

Sad that it takes something like this for me to prepare for the next time ... if there is a next time, God forbid. This isn't the first time Payton has been lost ... but I think having the police involved made it that much more grand.

Here are some things I am doing ...

1) Those little ID cards they send home from school? Or even the ones you can have made at your local Sheriff's office? Keep them. Put them in your wallet. Know exactly where they are. 

*The officers were running around my house looking for pictures of the girls. Current pictures. I was in such a panic ... I couldn't even think. I didn't even know where to look ... in my own house. I had one of our Christmas cards laying on the counter (see ... I knew my mess of a house was good for something) and the officer snapped pictures of each of the girls into her cell phone, uploaded it to dispatch ... err something ... and told me that each of their photos would pop up on the screen of every squad car. Freakin technology is awesome. But even more awesome would be having a mom that is prepared for something like this.

2) ID bracelets. I just ordered each of the girls one of these ... I imagine I will put them around their ankles, but we will see how that works out. For $8.95 each ... I figure I cannot go wrong.

3) I am looking at this or this or this ... and wanting more suggestions as to what might be best.

That's all. My head hurts. My babies are safe and sleeping in their beds. Never a dull moment ... that is for sure.

Think about it.

Don't pity them. Don't talk down to them. Be open to them. Be open to people. It changed my life, I think it would change yours.
~Johnny Knoxville, discussing use of the R word and reflecting on his work in The Ringer with Eddie Barbanell, an individual that has Down syndrome

Talk to them. Be their friend. Love them. Hug them. Do anything to raise the spirits of people with different abilities. It is like God taking something away from them in one area and making them extraordinary in other areas. Break down the walls. Break down the stereotypes. Break down every wall you can.
~Eddie Barbanell, an actor that has Down syndrome



I have been told before that I am too sensitive when it comes to the R word. Quite honestly, that is hurtful. Just as hurtful as the R word. Is that what you are going to tell my girls too ... when one day they inevitably will come crying to me because their feelings are hurt after hearing someone called them retarded? Are you going to tell them they are being insensitive too?

Do you realize just how often the R word is thrown around?



I know. I used to be one of those people. How ignorant was I?

The I-didn't-mean-it-that-way arguments are meaningless. It doesn't matter how you meant it. Using the word insinuates so many things about my girls ... about any person with an intellectual disability.



Think about it. 

Is there anyone in your life that has changed your perspective of the use of the R word?