Tuesday, March 29, 2011

more on school

Here's a bit more on school... now that I'm calmed down a bit and have had some time to think, talk it out, pray, and stew on it :)

First off, (I'll put this at the beginning for those that don't read to the end LOL!), I have a request.  If your child has Down syndrome and is in a fully inclusive setting, or WAS in a fully inclusive setting, would you please leave me a comment or shoot me an email about how it worked for your child.  Maybe share if they had any aide, whether therapies were "push in" (in the classroom) or "pull out" (to a resource room or other area of the school), and what the experience was like for your child and family.  That would be a great help to me.

Also, if you have any links to resources about inclusive education- research based reasons WHY our kids can and SHOULD be included in the regular classroom rather than only joining in for lunch and activity.

Thanks so much!

Ok, on to where we are at.  Expect some rambling... because my mind is not all that organized still!  (will it ever be??)

Here's what we have as far as school age kids next year:
  • Aleksa, 8 yrs old, expected to be placed as a 2nd grader, not currently enrolled in public school (homeschooling), and not eligible for a state-based scholarship to change schools, likely placement is a "supported level" classroom (same as Emma).
  • Emma, 8 yrs old, will go up to 2nd grade next year, currently at an "out of area" school which we will call "A" via state-based scholarship in a fully self-contained supported level classroom.
  • Kristopher, 7 yrs old, will go up to 2nd grade next year, typically developing and currently out of area at the same school as Emma, "A". 
  • Wesley, 6 yrs old, will enroll as a kindergartener next year, not currently enrolled in public school (homeschooling), and not eligible for state-based scholarship to change schools.
  • Brianna, 5 yrs old, will go up to kindergarten next year, placement still in process and a big question mark, has 3 schools possible for next year, is eligible for state-based scholarship to change schools.
  • James, 4 yrs old, will stay in K-4, already determined by staffing and IEP team (he technically should go to Kindy), attends an EELP K3/4 classroom currently at "A".  Could attend any school with openings in an EELP classroom.
  • Micah, 4 yrs old, will go up to K-4, attends an EELP K3/4 classroom currently at "A".  Could attend any school with openings in an EELP classroom.
Ok, we're calling the school the kids currently attend "A".  Five of the kids are currently enrolled there.  Emma is there on a state scholarship (McKay).  Kristopher is out of area and can be renewed.  Micah and James could be re-staffed to attend there.  Brianna, as of right NOW, can NOT return there because the school is closed to new McKay scholarship students (she would be new since she's 'staffed' there as a PreK but McKay'd there for Kindy) AND new Out of Area students.

This also means that Aleksa and Wesley cannot attend "A" next year as out of area, and neither of them is eligible for the McKay scholarship since they weren't enrolled in school from October to March this year (since they weren't even in the USA in October...).  

School "B" is our neighborhood school.  They have NO ex-ed services for our children, and only if the child is in full inclusion could they possibly attend there.  Kristopher could attend "B" next year, bussed from about 1/2 mile down the road where the bus already picks up the neighborhood kids (well, those that attend public school anyway...).  MY goal for Brianna, and the best placement I can see for HER would be to be completely included in Kindergarten.  I see no reason why she couldn't be!  She would need support, YES, but she could likely be a part of a regular kindy classroom without too much difficulty with minor modifications.  So Brianna could then, if her IEP is written with support for full inclusion, attend our 'home' school, "B" (or, if it was 'open', could attend the school she is at this year in an inclusion setting, school "A").

School "C" is our school's "feeder school" for children that need the supported level classroom.  I have not yet visited this school (but plan to after Wesley's surgery) but from what I know of the school, School "C" is a lower-scoring school in FCAT (testing), in school choice approval, and in several other areas.  It is not a school that I would choose for my kids to go to.  There are more behavioral issues at this school.  It is not a school that I would send Kristopher to as an out-of-area student, or Brianna to in an inclusion setting.  Next year, I would not want James and Micah coming up to this school since they mimic so many behaviors already.  It is as far away from our home as school "A" (A and B are both similar in scores and school ratings).  School "C" does not have a Pre-K for the boys.  This is where Aleksa and Emma would "flow to" since school "B" has no services for them, and... if our staffing specialist has her say in it... Brianna would as well, to be in the supported level classroom.  Of course there's possibly Wesley too, so that would be 4 of my children in ONE class at this elementary school.

There is also school "D".  School D is 30 minutes away from our home and offers the only classroom (that I'm aware of) for "profoundly mentally handicapped" kids... renamed now to be more politically correct as the "Participatory level" classroom.  It has been suggested that this classroom may be more appropriate for Wesley, which I laugh at.  He is bright, he is just physically and visually impaired... not to mention that he doesn't know the language!

So, there we have it.  Seven kids, four schools.  Have I mentioned that the age-gap between James and Micah and Emma and Aleksa is only 4 years?  Yes, we have seven kids in 4 years.  All seven kids are in Prek, Kindy, and 2nd grade.  Why should they have to go to 4 different schools?  Why can only our typical son attend at our neighborhood school?  

Then there comes another problem...  If the "powers that be" determine that six of my children should be in the assisted level classroom, then that just about FILLS the classroom!  Those are done in "primary" and "intermediate" levels, and generally are K-3 and 4-6 grades.  Sometimes, due to numbers, they are split differently such as K-1 and 2-6... which I don't think is an appropriate span for teaching, but my kids aren't being faced with a classroom with that great of a span right now so that's not really my difficulty.

My difficulty lies with this:  If my children are 2/3 of the class, or more, then what time are they getting AWAY from one another?  If they learn best all together, then why not homeschool?  If they will all go into the same class at school and be taught the same things, then I could likely do that in the home environment with even greater success because the behavioral side of things would cut down GREATLY (this is based on current and past experiences with the kids' behavior at home and at school). 

Also, I *know* that Brianna is not at the same place that Emma and Micah and James are.  Yes, they all have Down syndrome.  NO, the same school placement will not work for all four of them.  Brianna REALLY LOOKS AROUND and will behave how her peers behave.  She doesn't need an aide at church, she goes with the crowd and needs just a little direction, and would need some modification on assignments as well as a little more "directive" on them.  But learning to make a line for 5 weeks at the beginning of the school year like Emma did this year?  No, that wouldn't be appropriate.  GREAT for Emma!  Right now, it is likely to be GREAT for James and Micah.  For Brianna?  She will do much better, I believe, in a classroom working on letters and numbers and writing her name and spelling and colors and shapes and academics. 

Aleksa is somewhere in between.  She is BRIGHT, and she is likely very capable, but due to her limited exposure, right now she NEEDS what Emma is getting... It's a matter of a tough start for her, and needing to back-up and start with the basics even though she's older and 'could have' done well in the track we're trying to take with Brianna.

Wesley is an enigma.  We're seeing new exploring skills and social skills and understanding from him on almost a daily basis.  He has the orphanage and social delay, but he may or may not have any cognitive delay whatsoever.  We have NO IDEA.  You can't tell that based on his diagnosis (all children with Ds have SOME cognitive delay, mild to moderate... whereas some children with CP have NO delay and some are severely affeted...).  So he is a wait and see.  Teach and find out.  Put him in the LEAST restrictive environment to START and go from there.  I think a supported level classroom would be an appropriate start until we find out what he understands.  From there he could be mainstreamed with support if we find he is cognitively able to do that.  Or, should he all the sudden digress (haha, yes, of course I'm kidding!) then another placement may be necessary...

Could Emma, Wesley, and Aleksa all excel in the same classroom?  Right now-- probably.  The next year (2012-2013) when James and Micah move up would all 5 be appropriate in the same classroom? No way... but-- by then Aleksa and Emma would be 3rd grade and likely in the Intermediate classroom leaving Wesley, James, and Micah.  Brianna?  Doesn't fit in on either equation...

Now, how in the world do we really make this WORK in a REAL environment with the ACTUAL schools and rules and regulations and staffing specialists and test scores and teachers and counselors and and and and... I have no idea. 

I don't want to be split between two or three elementary schools.  But we may have no choice about two.  If we have to do two, will we send only some kids to school and homeschool the others?  Or will we do 2 schools and hope for the best?  If there are 3 or 4 schools in the mix we will have no choice but to pull some kids.  After all, a profound class is not appropriate for Wesley and that would be the only reason for school #4.  

More things stewing in my brain:
Is there any way to "go against" having to have children attend a school with 'worse ratings' than their home school based on the fact that their home school doesn't offer services for them?  
Is there any way to get an 'override' into a closed (full) school if it is the only one that can effectively serve your entire family's needs? 
What do we need to bring to the plate in order to 'convince' the school that full inclusion is the appropriate placement for Brianna for Kindergarten?  
And to justify placing a child that 'tests' profound into a supported classroom based on the knowledge that he has ZERO life-experiences at 6 years old but CAN learn? 
How do we meet the individual needs of all of our children if we don't have the ability to even have a small presence at any of their schools due to them being spread between multiple schools?  
How do we even get our kids TO school if we don't put them on the bus until they are 40 lbs (MY CHOICE, yes, I know they could be bussed)?  And home?  And holiday parties?  And class field trips?  And dealing with behaviors?

The list goes on... Any input?  Post-up... I'll answer questions/respond to suggestions in a later post.

We DO already have an advocate involved who is GREAT and attended this last meeting with Michael and I.  She also has a 5 yr old daughter w/ Ds so she knows right where we're at! :)


  1. Go in informed - use vocab that says you KNOW the law.

    FAPE - Free Appropriate Public Education - they are REQUIRED to provide this...key word APPROPRIATE. Do you have therapist or physicians who could right that those environments are not right?

    Look for a local parent advocate group. They'll come in with a room full of people and it helps if you do too.

    Bring pictures of the kids - don't let them treat them as numbers or diseases.

  2. Just reading that makes my head spin... I really hope you find a great solution, but that is way out of my league to offer advice :)

  3. Merideth,

    I work for our state board of Ed as an Inclusion Consultant and work with school districts to include kids of all ability levels in the Least Restrictive Environment. I am running out the door right now to take some kids to swimming lessons and only read part of your blog, but I have articles, research and experience of my own girls doing well in a fully inclusive preschool setting. Email me at anne.mc.hollis@gmail.com an lets talk specifics about what you are looking for. I will reread the blog tonight and maybe we can put our heads together and think of strategies for you to take back and make this situation better for all of you.


  4. I know Oak Park Elementary School has a wonderful program for exceptional children. I volunteer there and see the behind the scene stuff. I'm not sure about the inclusion situation. I don't know at what level of development they put them into regular classrooms. They do have a classroom for the severely mentally handicapped though.

    I do know that they are the only school in the county (and probably state) that offers horse therapy. They have a therapy swimming pool on site (one of only THREE in the state) and they have multiple physical and occupational therapists and an Adaptive PE teacher. They have a lot of resources. If I had an exceptional student I would have no problem sending my kid there. I can see it in the teacher's eyes, and the physical therapist's eyes that they LOVE working with that demographic of children.


  5. First, I think bringing pictures of the kids is a great idea! Can you get a letter of recommendation from Wesley's doctor? Maybe consider the same for the other children, I think it would be hard for them to argue with the doctor or therapists recommendations. I think, logistically, it would be easiest to homeschool all but Kristopher (is he over the 40lbs to be bussed to your neighborhood school?) and Brianna, if you could get full inclusion for her. If you think it is for you...I greatly admire those who homeschool but I know I'm not cut out for it myself!

  6. I have children who are MR, but not DS. If you would like to know any of our experiences, feel free to contact me!!

  7. Had time to read, now to absorb and respond- I'll email, post a comment or blog it and let you know when the kids give me time :)

  8. Hi Meredith! I love your questions and hopefully will be able to help with them when we next meet. We have designed some simple info sheets to give to teachers ahead of time to prepare them for your child as a child first and a child with DS second and we also have some websites that will give you supportive info. The bottom line is, each child is unique and what may work for one child ( an "ideal utopia setting") may be absolutley disastrous for your child. So even though you are wise to gather all the info you can from other parents and their experiences, the most appropriate setting for your child (for each of your precious children) will be one that is designed by you and the educational staff involved. And it may need to be one that has never been tried before, or that sounds absolutely crazy and not at all the way you would expect it to be. You are amazing parents and it will be exciting to see what path God has for you in this new phase of your lives. So - we can't wait to see you!!!
    Laura Watts, M. Ed.
    Director, Down Syndrome Center at Hope Haven
    Jacksonville, Florida

  9. One of the best secrets to getting what your kids need at those meetings is to know as much as you can about the laws pertaining to education and disability as they apply both to your state and the Federal requirements. Get whatever booklets, Federal documents, etc. that you can find that apply, and carry that stack of paperwork prominently displayed along with your notebook for taking notes. Put it on the table in front of you. Learn the education "buzzwords" your district likes,(a teacher friend in your district can fill you in on these) and use them in your conversation with the educators. Being well prepared will make the administrators much less likely to try to confuse you or dismiss your ideas. You can always request to tape the meeting so you can go over it again at home. (This may not be allowed, but is very valuable later when anyone renigs on their word.) I am including a helpful website. Good Luck! http://www.wrightslaw.com/ PatE

  10. As you know, we live in Canada, so some things may be a bit different. Kaia is in grade 1 and is (and always has been) fully included. She attends the same Catholic school as her brothers and has a full-time aide. Here, our Catholic schools are publicly funded, and they also do not offer segregated classrooms. The Catholic board believes in inclusion therefore all kids of all needs are in the same class. That being said though, there are not that many kids with special needs in her school. At least not many with visable (why I can't spell this word I don't know) disabilities or high-needs. Kaia is the only one in her school of about 400 that has DS. Now I know that an inclusive setting isn't right for every kid, but for Kaia it is definitely what is best for her. She has excelled unbelievably this past year, much more than I ever expected. Her aides are wonderful and her teacher "gets" her. She sees her potential and does her best to get her to reach it. In some areas she is (obviously) definitely behind her same aged peers, and in other areas she is right where her peers are, or even ahead. At this point she is not having any pull-outs or push in, except for ST twice a week which is only for about 4 months out of the school year. Inclusion has worked for her and I wouldn't want it any other way. That may change in the next few years, but for now it's what's best for everyone.

  11. I will call my Mom and ask her about what programs they had for Holly when she was in school, she went to "A" as well if "A" is the school I think it is. She had neither DS or CP but was special needs and very hard to teach and for years they couldn't figure out what diagnosis she was so she was tossed all over. She went to Challenger and was quickly pulled out and put somewhere else but I can't remember where. For high school I know that the other "A" locally has pretty good programs for kids with special needs based on their skill set. Holly was in life skills classes as well as academic ones so that she would learn to do things like laundry, or cook a simple meal, or basic first aid things.
    There is a little girl in Brett's grade, Grace, who has DS and though she was held back a year or two based on her needs is mainstreamed 5th grade this year with Brett. We've done the Buddy Walk with them. I'll see if I can get in touch with her parents and have them email you, they might be able to give some insight, though we're in SC so the "rules" might be different.
    I'll be saying some prayers that everything works out and solutions that are best for your kids are found.
    Check out Calvert homeschool curriculum, they have a program called Verasity, I'm not sure if it's tailored to special needs or just LLD kids, we're homeschooling the boys next year so if I run across anything that might be useful to you I'll pass it along.

  12. I am a SpEd teacher in another state so some things vary, but certain aspects are standard nationally. The district has a responsibility to provide the Least Restrictive Environment for your kids and you should be willing to fight to get that. Brianna sounds like a good candidate for Inclusion, especially in kindergarten. When handled well, it is a great opportunity for typical and special needs kids. I have a student with CP in a wheelchair who is non-verbal and uses an eye gaze computer system that has been fully included all through elementary school. His peers know him and he and his aide are just part of the class. It can be done. I don't know any of the transfer rules, but talk to other special needs parents in your area. You as the parent have a lot of rights, so familiarize yourself with them and advocate for your kids, while still listening to what the district has to say. My gut says having your kids make up most of the class probably isn't ideal. Good luck figuring it all out!

  13. I like this site for stuff on inclusion:

    I have seen many children with mild to moderate cognitive deficits (and autism, CP, etc!) included successfully, typically with an aide and a special educator in charge of implementing accommodations and task modifications. A child might be "pulled out" for intensive academic or therapeutic work or to chill out of frustrated or overwhelmed. However, the majority of the day the child is IN the classroom with her peers. Moreover, most successful programs include peer education on disabilities and how to understand and include the SN peer and facilitate interactions through "Circle of Friends" type social opportunities. If your child can manage in the busy noisy world of a typical class then this is a great model- for everyone.

    As for Wes, our motor and language impaired guy... has he been evaluated for tech access? I'd love to see if he can be trained to respond to something like an IPad and a proloquo2go type app for communication. If he cant coordinate movement for such a device then how about a gaze controlled program? Even teaching him to clearly communicate yes and no consistently would enable an assessment of his abilities. For now, I would assume that he is cognitively typical (with a severe communication and motor impairment) and go from there.

  14. Our son with DS, now 18 and a senior in high school, as been in full inclusion his entire school career. In kindergarten there was an aide assigned to the kids with special needs. As he progressed each year we looked at his needs and put in his IEP that he needed an aide for whatever time was necessary (for example, frequently it was for math, to keep him on task and break down the problems into simpler segments for him). He did very well. He had a tremendous advocate in his k-2 teacher, who said when he graduated from her class that he should not be put in a contained classroom because he was succeeding where he was. We agreed.

    I will say it has taken some hard work from us, and up to 2 1/2 hours a night on homework some years, but he is graduating with a regular diploma. He really benefited from inclusion (and so did the students around him).


  15. First of all, I really enjoyed this post. It´s really interesting to read how the educational system in USA works. I really hope everything works out.

    In my country (Scandinavia) special needs students either attend a special school (a really good one that´s tailored for children with special needs and has a really good reputation - the choice is up to the parents) or they are included in the general classroom. Generally, it´s tried to include special needs student as much as possible in the general educational setting and they have an aide that helps them. This works out well for most people and the aim of the national educational system is to have "schools without segregation" that is, that the school system is supposed to accommodate everyone to their best ability. Obviously it´s not perfect but I know of many cases where special needs students have been fully included in the general setting very successfully. So full inclusion for special needs students can really work!

    Recently, special needs students have been accepted in the local University in a program with great success. They have adapted well into the school environment and they are fully included in classes. And those are students with special needs ranging from autism and developemental delays to Down´s syndrome. They are very successful and good students. I attended class with the special needs students last year and it was the best experience ever.

  16. As someone else said reading that makes my head spin. It seems like the best choice is for everyone to stay where they are, school A, adding in Aleksa and Wesley, with Brianna going into the ordinary kindergarden class with an aide. I think otherwise it will be extremely tough on you drop off everyone and coordinate school activities. Sometimes (often times) rules can get bent once you start pushing for that as a parent.

    As a special education teacher here in the UK, I would say not to discount school C based on heresay or scores. Very often they don't give you a complete picture of the school, and its always worth visiting yourself, spending time in the classroom and observing. I would also urge you not to discount the classes named for more disabled students - often a name is just that and the teacher will differentiate the work depending on the abilities of their students, and would not be contained by a classification of the classroom if a student was able to access more complex work.

    Here in the UK there are special schools, and there are community schools. Parents have a free choice as to where they place their children if they have special educational needs and have a 'statement'. A statement here is a legally binding document which describes the child's educational needs and their difficulties, and sets out how much therapy they are to access each term (physical, speech and OT). A child with a statement automatically goes to the top of the list for the school a parent chooses if they are able to prove that is the most appropriate placement for their child. In most cases parents are urged to consider inclusion in community schools rather than accessing the special schools, and a parent may choose a community school over a special school even if a special school is considered more appropriate by the teachers and therapists as children have a right to inclusive education.

    I personally feel this does not always benefit the child however. Inclusion to me, in practicality often means little more than babysitting a child with special needs through a school day they are not able to access. A teacher has 29 children plus a child with special needs, and that child with special needs will be allocated a learning support assistant for a certain amount of hours in a school day. Its rare that the support assistant will be a trained teacher (I personally have never seen one who is), and will have been given very little training in the child's special educational needs. They often times have done a 10 week training course at the local community college and nothing more. They may not have a college degree. Usually a child with special needs can be included in this manner successfully from 4-6 yrs old. But as the child begins to need to learn to read, write, and do arithmetic they need specialist teaching, and very often this is provided by the assistant, separated away from the other children - which in my book is not inclusion!! I have seen children with special needs seated on a separate desk, away from the other children in the class many times. I have also seen children manipulated to take part in activities they are not accessing in any meaningful way - I've seen an assistant pick up a child with Down Syndrome and run with her during a running race at a sports day. The lack of respect for the child as an autonomous person, is I think a major problem during inclusion in the UK.
    Many children are transferred to special school after the age of 8 as the parents realise that they are not accessing enough specialist tuition through inclusion.
    I am hoping to do my masters in education in Inclusion once my oldest goes to school. There has to be a better way of doing it than we are managing just now!

    Anyhow I hope these different points of view help you in your search for the best educational fit for your children,


  17. Meredith,
    Have you heard of Downsed.org based in the UK? They have included children with DS in the regular classrooms since the 80's and have done and published several studies. They have a web site, do in-services, publish journals, etc. Most of the materials can be purchased or downloaded for free online. They have a great See and Learn reading program and also use a visual math system called Numicon. Here is a link to their store"

    Here is a link to their published research on inclusion vs. special classes. Look at all the publications. They are very practical, not overwhelming and helpful.

    Hope this helps.

  18. I didn't read all of the comments, but I do want to be sure you understand that it is your right to send your kids to your "home school". You don't have to prove they can make it. The school has to prove they can't. How do they know they can't if they haven't tried and have no data to prove otherwise?