Chief Executive Advocator
I'm seriously thinking about having business cards made for myself with Chief Executive Advocator (CEA) printed under my name to hand out at school meetings and as part of my signature on emails since that seems to be my main job these days.
The past few months have been a flurry of IEP (Individualized Education Plan) and/or transition meetings for 6 of my kids. Transitions for the upcoming school year include Lily and Dasha going from elementary to middle school, the twins graduating from high school and heading to college (still advocating though!) and Leo starting Kindergarten. I'd be lying if I didn't say it was fairly stressful keeping it all straight right now. It's hard enough keeping track of one kid, but right now we have 5 kids with IEP's and a lot of changes coming up this fall for which I've been trying to make sure everything is tweaked perfectly (I wish) and everyone has all of their needed supports in place. In other words, I've been advocating for my children's rights. It's kind of like the story of David (me) and Goliath (the schools). At times, when you're sitting in a room full of experts focused on dissecting every little facet and nuance of your child to death with all eyes on you, you can get a little overwhelmed and just a bit depressed wondering why things can't be easier.
Personally, I'd rather just show up for the annual ice cream social at the start of school and bemoan the fact that my child got so and so as a teacher or rave happily that 2 of my daughter's best friends are in her class. It kinda sucks planning in great detail desired goals and expectations for every aspect of school including what supports will be allowed and used for your child, how many minutes of speech and occupational therapy a month they'll receive and whether they qualify for things like special transportation. And then there's the million dollar question and subsequent decision with all IEP's: How much time will your child be included in the general ed classroom vs. the resource/life skills classroom?
Inclusion is the hot topic these days and everyone seems to have a different definition of what that means to them, but for me inclusion is definitely not a one size fits all version that says that either you are 100% included with your typical peers or the school has failed inclusion. I believe inclusive practices should be shaped and molded to each individual child. This isn't only about cognitive, physical or verbal ability. It's about what is the best placement for each child to excel, learn and grow to reach their highest potential.
Having 6 kids with IEP's and varying disabilities, I learned that what is best for one of my kids could be a disaster for another. The two pictured below just graduated with a Core 40 diploma from high school. Having autism, they qualified for special education, but we pushed hard for them to be fully mainstreamed with special education as an enhancement to their regular education classes. Thankfully the schools agreed. BUT I believe they agreed mostly because of the high level of intelligence, school readiness skills and the verbal ability both boys had. They were fully included every step of the way except when they were pulled out for things like speech and social group especially in those early years. Reagan (the one on the left) even had a full time aid until he left middle school. Once they hit high school, all they had to help facilitate their continued success were guided study halls with resource teachers and a social group. They are a perfect example of what full inclusion can do for a child with a disability.
BUT..
(and that's a big but)
In my opinion not all inclusive practices fit or work for every single child with a disability.
I think demanding, shouting, pleading and cajoling for 100% inclusion is unrealistic in some cases. This was a hard pill for me to swallow for a few of my kids. Back when I was advocating for the twins and their placement in school, there was only one option in my mind and that was full inclusion. No ifs, ands or BUTS.
Then Lily and Dasha started Kindergarten and I slowly altered my opinion. After much discussion with me advocating heavily for full inclusion for both girls, Dasha was allowed to be in the kindergarten class while Lily was only partially included with her typically developing peers during calendar time and "Specials", but the majority of her time was in resource or what was later referred to as the life skills classroom.
Now I'm going to insert here my belief that if every school would employ a true expert like Dr. Paula Kluth in their midsts, then the schools would get a very eye-opening version of what inclusive practices truly mean and how beneficial it is for everyone instead of the bits and pieces they currently offer. The research supports this fact: Include, Belong, Learn and Inclusive Education Research & Practice.
What was surprising to all of us was while Lily bloomed in life skills, Dasha regressed and started having major behavioral issues in gen ed. She even bawled hysterically a few times and Dasha does not bawl in public. We met with the school and after weighing our options, pulled Dasha out of the kindergarten class and moved her in to the same classroom as Lily. The school just wasn't willing or equipped to give Dasha the level of support she needed for full inclusion. After seeing how well Lily was doing in life skills, I allowed the change because Dasha wasn't learning anything at that point other than to be obnoxious and disruptive. Behaviors we'd barely even seen with her. Behaviors are a form of communication and she was communicating to us how unhappy she was in kindergarten. Once she'd adjusted to the life skills classroom, she reverted back to her mostly sweet self and started to finally pick up academic skills like knowing her ABC's, colors, reading sight words and attempting to count. She continued inclusive practices in some areas and started behaving and participating better in Specials (art, library, music & gym) with her typical peers, started eating her lunch at a lunch table with typical peers and enjoyed playing with her peers out on the playground. Those were all strong areas for her to be around typical peers.
While it wasn't the placement I preferred, I realized that the pressure and expectation of the regular ed classroom was too much for her. I think part of it was the schools lack of vision for inclusion for a child like Dasha, but also I think Dasha's personality, adoptive and orphanage background, hearing loss and overall needs prevented a good fit for 100% full inclusion. The only way Dasha could possibly be fully included was if the school had a paid TRAINED para/aide as a one on one for her in the regular ed classroom and I'm not even sure that would work due to the above mentioned issues Dasha has to bring to school every day.
I'm fairly okay with that because I incorporate our own version of full inclusion these days. She is fully included in typical dance and gymnastics classes with other girls and loves it. We still have behaviors that need to be addressed, but I think a big part of using inclusive practices for Dasha needs to be done out in the community because that is where she excels. Academics frustrate and confuse her and sitting in a chair listening to a teacher talk when you have hearing issues is torture for her. I'm convinced it all sound like Charlie Brown's teacher did in his class. Wa Wha Wha Wah Wah Wa... She fidgets, messes with anything she can get her hands on and often talks to herself to occupy the time. How is that a learning experience for her? Per society, her disability already sets her apart from her peers because her interests and aspirations are on a completely different plane than her peers. For example, she still plays with dolls and stuffed animals and loves Mickey Mouse Clubhouse and Doc McStuffins. Most 10-12 year old girls tend to immediately notice the developmental differences and some can almost be patronizing at times. Thankfully, once they got to know both girls, their school peers accepted them wholeheartedly.
As for Lily, the impact of having Down syndrome and autism makes full inclusion almost impossible. This is a child that can struggle within the life skills classroom dynamics and expectations so I can't even see attempting putting her in a typical 5th grade classroom and expect anything good to come of it. She's easily overwhelmed by sight, sound and touch. Noise and crowds distress her unless it's a Barney concert. I'm really okay with her being included only during Specials with her typical peers because that's about all she can handle. Why would I over-stress her to the point of her shutting down and learning nothing? Now I will draw the line of her doing menial tasks in the school because she's in life skills. I will not accept my two girls doing recycling or cleaning lunch tables as part of their schooling.
My goals for both girls are to learn how to read at a level to read a book of their choosing, speak intelligibly, behave appropriately in social settings (for the most part) and have a few friends in their lives. I also expect Dasha to be trained and educated at a level to hold a full time job. I honestly don't ever envision Lily working a job with her level of needs. Personally, I think she can just be loved as the quirky aunt or cousin Lily in our family.
Obviously, there are some with Down syndrome that have college aspirations and dreams and that is wonderful for them. They should be the ones that get full access to 100% inclusion in the classrooms because that helps them achieve their academic goals.
Dasha and Lily, on the other hand, need to learn other things that are meaningful and appropriate for them especially skills and academics that help them function in this world. I also think there is some benefit to being around other kids with disabilities similar to theirs for part of their days. They aren't stared at, puzzled over or whispered about because most kids in life skills just don't care about popularity or how you look or dress and it's pretty refreshing when my girls enjoy their peers who are like them and even those who don't make eye contact, talk or barely acknowledge them.
As the girls move on to middle school, we are branching out a bit with Dasha. She will be included in reg ed Specials where Lily will be getting more adapted Specials. Dasha will still be in the life skills classroom, but will be expected to have increased responsibilities like working a locker, walking to Specials independently and going to a guided study type hall to do some of her academics. I think the life skills teacher is going to push the girls more academically than they've previously had and I have a really good feeling about their transition except for the crack of dawn bus pick up. Lily isn't going to like that one bit since she's such a night owl.
Finally, we hashed it out regarding Leo's placement in the fall and let's just say it got a little hairy during the meeting. I wanted full inclusion with a full time (trained) aide. I worry a lot about Leo being with a bunch of other kids with autism stimming as a group, learning new behaviors or feeding off each other. We discussed the pros and cons about him fully included with his peers with a full-time aide. Leo is nowhere close to having the same school readiness skills Reagan and Kaelan had at 6. He speech is still emerging, but there are no real conversations going on with him. It's usually echolalia or him asking (or demanding) for wants and needs. He's also has started singing, which is adorable and I love, but won't help much in class. He can barely write and still hasn't figured out his handedness. I think he's left handed and others think he's right. Ambidextrous is a common theme right now when using his hands for any task. He needs pretty intensive intervention to even participate or tune in during classroom activities. Hand over hand practices are very common except with art. This boy loves art and loves to get messy while loving his art. He is not a fan of sitting in a chair for any length of time and tends to be in constant motion.
After considering all of that, I acquiesced on the full inclusion. Right now his IEP states he will go to the reg ed classroom for calendar and Specials. He will also participate in recess and lunch with his typical peers. Otherwise, he will be in the resource (not life skills) classroom. He will get to go to swim therapy once a month with the life skills class and that is a particular favorite activity for him. He also will have music therapy, speech therapy, physical therapy and occupational therapy throughout his week. In resource, they will be working on his many specific academic goals. We will be reassessing about 6 weeks in because I still have my reservations.
I know some won't agree with my stance about inclusion and that's fine. Because I have have multiple children with IEP's, I'm careful with picking my battles because I'm realistic enough to know my relationship with the school needs to be on pleasant terms. I'm placing my children in their care for several hours a day and I need to feel good and trusting that they will be enjoyed and respected while they're there.
The past few months have been a flurry of IEP (Individualized Education Plan) and/or transition meetings for 6 of my kids. Transitions for the upcoming school year include Lily and Dasha going from elementary to middle school, the twins graduating from high school and heading to college (still advocating though!) and Leo starting Kindergarten. I'd be lying if I didn't say it was fairly stressful keeping it all straight right now. It's hard enough keeping track of one kid, but right now we have 5 kids with IEP's and a lot of changes coming up this fall for which I've been trying to make sure everything is tweaked perfectly (I wish) and everyone has all of their needed supports in place. In other words, I've been advocating for my children's rights. It's kind of like the story of David (me) and Goliath (the schools). At times, when you're sitting in a room full of experts focused on dissecting every little facet and nuance of your child to death with all eyes on you, you can get a little overwhelmed and just a bit depressed wondering why things can't be easier.
Personally, I'd rather just show up for the annual ice cream social at the start of school and bemoan the fact that my child got so and so as a teacher or rave happily that 2 of my daughter's best friends are in her class. It kinda sucks planning in great detail desired goals and expectations for every aspect of school including what supports will be allowed and used for your child, how many minutes of speech and occupational therapy a month they'll receive and whether they qualify for things like special transportation. And then there's the million dollar question and subsequent decision with all IEP's: How much time will your child be included in the general ed classroom vs. the resource/life skills classroom?
Inclusion is the hot topic these days and everyone seems to have a different definition of what that means to them, but for me inclusion is definitely not a one size fits all version that says that either you are 100% included with your typical peers or the school has failed inclusion. I believe inclusive practices should be shaped and molded to each individual child. This isn't only about cognitive, physical or verbal ability. It's about what is the best placement for each child to excel, learn and grow to reach their highest potential.
Having 6 kids with IEP's and varying disabilities, I learned that what is best for one of my kids could be a disaster for another. The two pictured below just graduated with a Core 40 diploma from high school. Having autism, they qualified for special education, but we pushed hard for them to be fully mainstreamed with special education as an enhancement to their regular education classes. Thankfully the schools agreed. BUT I believe they agreed mostly because of the high level of intelligence, school readiness skills and the verbal ability both boys had. They were fully included every step of the way except when they were pulled out for things like speech and social group especially in those early years. Reagan (the one on the left) even had a full time aid until he left middle school. Once they hit high school, all they had to help facilitate their continued success were guided study halls with resource teachers and a social group. They are a perfect example of what full inclusion can do for a child with a disability.
BUT..
(and that's a big but)
In my opinion not all inclusive practices fit or work for every single child with a disability.
I think demanding, shouting, pleading and cajoling for 100% inclusion is unrealistic in some cases. This was a hard pill for me to swallow for a few of my kids. Back when I was advocating for the twins and their placement in school, there was only one option in my mind and that was full inclusion. No ifs, ands or BUTS.
Then Lily and Dasha started Kindergarten and I slowly altered my opinion. After much discussion with me advocating heavily for full inclusion for both girls, Dasha was allowed to be in the kindergarten class while Lily was only partially included with her typically developing peers during calendar time and "Specials", but the majority of her time was in resource or what was later referred to as the life skills classroom.
Now I'm going to insert here my belief that if every school would employ a true expert like Dr. Paula Kluth in their midsts, then the schools would get a very eye-opening version of what inclusive practices truly mean and how beneficial it is for everyone instead of the bits and pieces they currently offer. The research supports this fact: Include, Belong, Learn and Inclusive Education Research & Practice.
What was surprising to all of us was while Lily bloomed in life skills, Dasha regressed and started having major behavioral issues in gen ed. She even bawled hysterically a few times and Dasha does not bawl in public. We met with the school and after weighing our options, pulled Dasha out of the kindergarten class and moved her in to the same classroom as Lily. The school just wasn't willing or equipped to give Dasha the level of support she needed for full inclusion. After seeing how well Lily was doing in life skills, I allowed the change because Dasha wasn't learning anything at that point other than to be obnoxious and disruptive. Behaviors we'd barely even seen with her. Behaviors are a form of communication and she was communicating to us how unhappy she was in kindergarten. Once she'd adjusted to the life skills classroom, she reverted back to her mostly sweet self and started to finally pick up academic skills like knowing her ABC's, colors, reading sight words and attempting to count. She continued inclusive practices in some areas and started behaving and participating better in Specials (art, library, music & gym) with her typical peers, started eating her lunch at a lunch table with typical peers and enjoyed playing with her peers out on the playground. Those were all strong areas for her to be around typical peers.
While it wasn't the placement I preferred, I realized that the pressure and expectation of the regular ed classroom was too much for her. I think part of it was the schools lack of vision for inclusion for a child like Dasha, but also I think Dasha's personality, adoptive and orphanage background, hearing loss and overall needs prevented a good fit for 100% full inclusion. The only way Dasha could possibly be fully included was if the school had a paid TRAINED para/aide as a one on one for her in the regular ed classroom and I'm not even sure that would work due to the above mentioned issues Dasha has to bring to school every day.
I'm fairly okay with that because I incorporate our own version of full inclusion these days. She is fully included in typical dance and gymnastics classes with other girls and loves it. We still have behaviors that need to be addressed, but I think a big part of using inclusive practices for Dasha needs to be done out in the community because that is where she excels. Academics frustrate and confuse her and sitting in a chair listening to a teacher talk when you have hearing issues is torture for her. I'm convinced it all sound like Charlie Brown's teacher did in his class. Wa Wha Wha Wah Wah Wa... She fidgets, messes with anything she can get her hands on and often talks to herself to occupy the time. How is that a learning experience for her? Per society, her disability already sets her apart from her peers because her interests and aspirations are on a completely different plane than her peers. For example, she still plays with dolls and stuffed animals and loves Mickey Mouse Clubhouse and Doc McStuffins. Most 10-12 year old girls tend to immediately notice the developmental differences and some can almost be patronizing at times. Thankfully, once they got to know both girls, their school peers accepted them wholeheartedly.
As for Lily, the impact of having Down syndrome and autism makes full inclusion almost impossible. This is a child that can struggle within the life skills classroom dynamics and expectations so I can't even see attempting putting her in a typical 5th grade classroom and expect anything good to come of it. She's easily overwhelmed by sight, sound and touch. Noise and crowds distress her unless it's a Barney concert. I'm really okay with her being included only during Specials with her typical peers because that's about all she can handle. Why would I over-stress her to the point of her shutting down and learning nothing? Now I will draw the line of her doing menial tasks in the school because she's in life skills. I will not accept my two girls doing recycling or cleaning lunch tables as part of their schooling.
My goals for both girls are to learn how to read at a level to read a book of their choosing, speak intelligibly, behave appropriately in social settings (for the most part) and have a few friends in their lives. I also expect Dasha to be trained and educated at a level to hold a full time job. I honestly don't ever envision Lily working a job with her level of needs. Personally, I think she can just be loved as the quirky aunt or cousin Lily in our family.
Obviously, there are some with Down syndrome that have college aspirations and dreams and that is wonderful for them. They should be the ones that get full access to 100% inclusion in the classrooms because that helps them achieve their academic goals.
Dasha and Lily, on the other hand, need to learn other things that are meaningful and appropriate for them especially skills and academics that help them function in this world. I also think there is some benefit to being around other kids with disabilities similar to theirs for part of their days. They aren't stared at, puzzled over or whispered about because most kids in life skills just don't care about popularity or how you look or dress and it's pretty refreshing when my girls enjoy their peers who are like them and even those who don't make eye contact, talk or barely acknowledge them.
As the girls move on to middle school, we are branching out a bit with Dasha. She will be included in reg ed Specials where Lily will be getting more adapted Specials. Dasha will still be in the life skills classroom, but will be expected to have increased responsibilities like working a locker, walking to Specials independently and going to a guided study type hall to do some of her academics. I think the life skills teacher is going to push the girls more academically than they've previously had and I have a really good feeling about their transition except for the crack of dawn bus pick up. Lily isn't going to like that one bit since she's such a night owl.
Finally, we hashed it out regarding Leo's placement in the fall and let's just say it got a little hairy during the meeting. I wanted full inclusion with a full time (trained) aide. I worry a lot about Leo being with a bunch of other kids with autism stimming as a group, learning new behaviors or feeding off each other. We discussed the pros and cons about him fully included with his peers with a full-time aide. Leo is nowhere close to having the same school readiness skills Reagan and Kaelan had at 6. He speech is still emerging, but there are no real conversations going on with him. It's usually echolalia or him asking (or demanding) for wants and needs. He's also has started singing, which is adorable and I love, but won't help much in class. He can barely write and still hasn't figured out his handedness. I think he's left handed and others think he's right. Ambidextrous is a common theme right now when using his hands for any task. He needs pretty intensive intervention to even participate or tune in during classroom activities. Hand over hand practices are very common except with art. This boy loves art and loves to get messy while loving his art. He is not a fan of sitting in a chair for any length of time and tends to be in constant motion.
After considering all of that, I acquiesced on the full inclusion. Right now his IEP states he will go to the reg ed classroom for calendar and Specials. He will also participate in recess and lunch with his typical peers. Otherwise, he will be in the resource (not life skills) classroom. He will get to go to swim therapy once a month with the life skills class and that is a particular favorite activity for him. He also will have music therapy, speech therapy, physical therapy and occupational therapy throughout his week. In resource, they will be working on his many specific academic goals. We will be reassessing about 6 weeks in because I still have my reservations.
I know some won't agree with my stance about inclusion and that's fine. Because I have have multiple children with IEP's, I'm careful with picking my battles because I'm realistic enough to know my relationship with the school needs to be on pleasant terms. I'm placing my children in their care for several hours a day and I need to feel good and trusting that they will be enjoyed and respected while they're there.
Comments