Tuesday, January 19, 2010

School age kids with DS

Neither of my girls are school age yet ... as in, kindergarten or above. While they do both attend preschools that are in elementary schools, the preschool programs are kept separate and they basically have no interaction with the rest of the school.

Since Mason started kindergarten, I have really begun to wonder how things will go for my girls once they start school. I know things are specific to the child, but my wish is to have my girls mainstreamed into a regular kindergarten classroom with an aide. You might think I'm ignorant to have that wish, but whatever -- it is my wish. However, the more I visit Mason's school ... the more discouraged I get that this will actually happen.

Not sure why, but that is just a general feeling that I get.

If I may, I would like to ask questions of those of you who already have kids with DS in school ... or if not, what your plan is for your child.

1) Will they be mainstreamed into a regular kindergarten classroom?

2) Will it be possible for them to have an aide in said kindergarten classroom?

3) No matter their placement ... and as long as they have an IEP, I assume they will be considered part of the special ed program?

4) Being part of the special ed program, does that mean they will always have to ride a special ed bus? What if they have an older sibling or buddy that will take care of them on the regular bus -- then can they ride it?

5) Where do they sit in the lunchroom? With a kindergarten class or with the self-contained class?

I know some of these things seem silly, but they all matter to me. The #1 thing I struggle with is having them stand out as being different than their peers. So yeah, my #1 goal is to have their peers understand how much they are alike, rather than different.

I think I have a really big battle to fight. Sigh.


  1. I answered the questions on FB, but I was wondering why you have a "bad feeling"? The little girl who is mainstreamed at our local elementary is the first child with DS to attend. But she is very "high functioning". I know they say that level of functioning shouldn't matter, but it does in real life. (which is why Kayla doesn't go there, they can't meet her needs -- an "appropriate" education outweighed my desire for the "least restrictive environment")

  2. I totally agree with you. My wish is to have Hannah mainstreamed in a regular classroom. Hannah is in her last year of preschool. She just had her IEP and her preschool teacher briefly talked about Kindergarten. I told her I wanted Hannah mainstreamed into a Kindergarten class. She said that the classes have about 20kids!!!!! Mentioned that one subject(I think Language is 90mins long) and there is alot of sitting in chairs required. I KNOW Hannah will not be able to sit that long BUT any child would find it difficult. Said probably at that time she would be pulled out of class to a Special ED class to work in a smaller group. Her Preschool teacher is worried Hannah would get frustrated and that would lead to more behavior problems.

    I understand where she's coming from. I don't want Hannah to get frustrated and take a "step backwards." I am going to push for a one on one aide. She does so much better with one on one attention. Towards the end of this year we will be meeting with her Kindergarten teacher to voice our concerns.

  3. Hi there! No children with DS (or children at all, for that matter) but I'm a speechie and I'm pretty close with a patient of mine and her family. KK is in a mainstreamed "pre-kindergarten" class in the public school system here. In their classroom they have roughly 20 kids (maybe less) and one reg. ed teacher, two teacher aids, and one ESE (special needs) teacher. I think it's a great set-up, as there are other children with special needs in the class too. It's my understanding that this will be the continued set up for KK until later on. Then, she will most likely be "mainstreamed" and put in a pull-out program. If your school has a good ESE program, they will probably focus on mainstreaming. It's my experience that unless a child has major, special needs that may affect others, that the goal is for mainstreaming.

    Yes, to always being considered ESE while they have an IEP. A "gifted" child is also considered ESE! :) Just means that they have certain needs that MUST be adhered to.

    I don't know about the bus thing, but I would think that they would be able to ride a regular bus. The other bus is for those with physical needs or can't have too much stimulation, or if the schedule of classes is different.

    KK sits with her class. From what I know, most schools really use lunch as an "inclusion" time unless the child's needs requires differently.

    Never think that any of your questions are silly or unreasonable! You are your child's voice and you have the right to ask ANYONE ANY QUESTIONS! If you encounter a professional who makes you feel otherwise, you should be wary of that professional.

    All that said, I really enjoy reading your blog!

  4. Bethany,
    I have loved reading your blog and I think your concerns over your girls beginning public school are justified. I do not have any children, so this is coming from a slightly different perspective, but I am a special education teacher for kindergarten and first grade students. I teach what we refer to, in NC, as "resource" or "pull-out". I serve children ranging from, children on the autistic spectrum to children with downs syndrome to children with learning disabilities. My suggestion is stand strong in your IEP meetings, and fight for what you truly feel is right, but remember to not alienate yourself. My hope for you, is that you have some teachers or support staff, that can help you in any upcoming transition meetings. Remember you can bring them to any meeting you want.

    As for the questions you asked, I can share what most I my students do.
    1) All of my students are in "inclusion" settings, but to differeing degrees. Some spend a few hours in the traditional Kindergarten class others spend 90% of their day there and just come see whent they need extra support. Some do not ever leave their class, and instead I go in to see them at specified times.
    2)This one you may not like. In my expierece it is like pulling teeth and extremely rare for a student to receive a one on one aide. I have only seen it once and the student was extremely physically abusive. Don't let this discourage you from attempting to get one for your girls. I think you are right in thinking that they could benefit greatly from an aide.
    3)Yes, no matter what, if a child has an IEP, they are considered special ed. Like I said earlier though there are different levels.
    4)None of my students ride a "special ed" bus, even my most severe students. Since I serve Kindergarten and first graders, I spend alot of time making "first-then" charts and social stories for the bus. Riding the bus, could also be part of your girls IEP's, such as a goal.
    5) Most of my students sit with their traditional class during lunch. In fact a few of my students who spend most of their time with me during the day. Spend key periods, such as lunch, recess, specials, and morning time, with their traditional class. I do have a few students who can't handle the noise and stimulation of the lunch room and prefer to eat with me, or another teacher. This too is where social stories are a huge help.

    I know this is very long, but I hope it helps. On a different note, my guess is that you have heard of Boardmaker, but if not it may be a huge help for you and your girls. It is software that has pictures for picture cues. I use this software alot to make social stories and "first-then" charts.

    If you have any questions, feel free to ask.


  5. Bethany, I was just about to blog something about this today but am torn b/c I don't know who will be reading this (people in my town). My girls go to one school which does not have a good special program so W will go to another school.I really don't care what people think about that I just want the best for him. I went just this morning to observe the class that he will be in next year. THe principal is excited about sped and inclusion for that matter, at my girls' school I don't think it is the same with the princial. My goal is for W to also be in a regular class with pull out as needed (ot, pt, speech etc). The principal said depending on how he functions he will be able to go into a reg. class with para help...AWESOME. they want to push these kids and expect a lot out of them MORE AWESOME! I dont want him to be shuffled around...She said they are NOT shuffled and teachers are checked on and very accountable. Make sure you have maybe a comb class...ask about inclusion...the girls may have to go to a different school than Mason but in the long run may be best for their education. I don't know all of the ropes by any means but I am learning. Here it is easier to change districts if your school does not provide what your child needs. I know this is a difficult decision and not one to take lightly, you just have to push and fight for what you know you children NEED! Good luck girl.

  6. Shelby has been FULLY included from the get-go (even in preschool) eventually with some pull-out for small group/1:1 help with reading, math and writing. She did not have a 1:1 aide in Kindy, as there was really no need...the CLASS had an aide and in addition Shelby (and other students) had the Special Ed teacher. Since then, with the exception ... See Moreof one year (and that was the WORST year) she has had a 1:1 aide...although her aide helps ALL the kids in the class (to some degree). Shelby does not ride the bus because we are walkers, but if she did, she WOULD ride the regular ed bus and we would (if need be) establish a buddy system. We may be looking at this next year for middle school (but that's a WHOLE other story!). In Kindy they don't have lunch (here at least), but every year since, she eats with her class. We have in the last two years or so, instituted some additional "social" programs to help Shelby with some of her social goals (and the fact that she can't do recess on the playground due to her pacemaker, so this program has some kids that stay with her during recess either indoors or in the outside courtyard). In our experience, the kids TOTALLY accept and include Shelby, and generally WANT to be her friend and help her when she needs it!!! They are PROUD of her accomplishments and completely let her "differences" go as just a part of who she is (I have witnessed both). I really feel that a lot of this comes from the fact that they have been with Shelby (and other children with special needs) for their entire school lives...to them it's "normal". After all THAT is what it is all about!!!
    Most importantly...don't set yourself up that it's going to be a battle, until and unless it really becomes one! You might be pleasantly surprised. Know what you want going into it, but also be open for "their" side of things, and work together for what's best for the girls. And know, that what works WILL change from time to time (sometimes moment to moment...haha!). Everyone working with them will need to be flexible, understanding, and not take things personally!!
    You'll get what you want...you are SUPER MAMA :-))))

    ~Sandi Long

  7. Bethany,

    Thanks for asking all these questions on your blog as it helps others like me as well since I get to read the feedback :) I'm super nervous about the next step to elementary school too. Tanner does so well in an inclusive environment socially. I'de hate for him to be separate from his peers too.

    mom to Lindsey,7 & Tanner, 4 w/ Ds

  8. Mara is in the pre-school program now at our school. She rides the bus with all of the other kids...preschool through first grade. We actually have our Kindergarten transition meeting tomorrow, and I have some of the same questions. I will let you know what they say.


  9. John started kindergarten fully included. He didn't have a one on one aide but there were two paraprofessionals in the classroom to help with several kids with IEP's From the beginning he was pulled out for speech. After about six weeks it was obvious that he was struggling to do the regular work. At that point he started spending more time in ... See Morethe special ed. room, which was great for him. The regular kindergarten work was very frustrating to him, but in the special ed. room he got one-on-one instruction at his level. The kindergarten teacher wasn't the most creative when it came to finding ways to include John, but he was included whenever possible. This year in first grade his teacher is fabulous at including him and has gotten the whole class on board with helping John learn the things he's working on. John is pretty delayed so he spends a lot of time in the special ed. room, but it's been great for him and I've been very pleased. This is the first year he's stayed for lunch. He started out eating in the lunchroom, but it's pretty chaotic in there and the kids all eat fast and then race out to recess. John's a slow eater and wasn't getting much to eat so they decided to have him start eating in the special ed. room. His teachers report that his lunches are much calmer and he has a chance to chat with his special ed. buddies. John has always ridden the regular bus with his siblings. At first I made his older brother and sister take turns sitting with him. They were good about it for the first 3 weeks or so and then told me they wanted to sit with their friends. Now John sits right up front by the driver which seems to work out OK. I do have to be out there to help him on and get him off again because his legs are short and the steps on the bus are so high. He's been acting up on the bus lately (saying "penishead" and blocking the aisle with his legs) so there's been some talk of using the special ed. bus, but we're trying to work on his behavior and keep him on the regular bus.
    That's all I know, Bethany! I am all for inclusion but not at the expense of John learning. I think all kids should start out fully included in kindergarten to give them a chance to show us what they can do. Many kids with DS do great in the kindergarten classroom, but John was getting lost. I don't think a one-on-one aide would have helped because he was nowhere near able to do the work expected of him. I've been very pleased with the special ed. program at his school and John loves school so it's all good. (Sorry for the novel!)

    ~Ann Bremer

  10. Well, Kayla goes to a private special ed school, but there is a little girl with DS in 1st grade who attends the local elementary. She has a 1:1 aide and rides the regular school bus, but I believe they do have a bus attendant for her in her IEP. I'm often in the lunchroom volunteering, and she sits with her grade. In fact, the kids are always ... See Moreasking her to sit with them! And yes, if your child has an IEP, that's special ed, because special ed is a PROGRAM not a LOCATION. Of course, every school district is different, and I'm not sure what is guaranteed by law and what is governed by school district policy (and if they say they have policy, then ask to see it in writing!).


  11. Hi Bethany, check out this link, http://jamesdmacdonald.org/Articles/MacDonaldStart.html
    I don't know if it will help, but I have been to one of his talks. He is amazing with SN kids. Can't help much with the school stuff as we will be keeping our little guy home.

    Also, about the palate expander, I just spoke to a women I work with who has a 14 y/o son with Ds. She found an orthodontist (who has a son with DS) to put braces and a palate expander on him. She said he has done very well with it and it has made a big difference in his enunciation of words. She said she makes an effort to find healthcare professionals who have a child with Ds, it makes all the difference.

  12. Things are a little different here (I'm in Canada) than they are there I think, but I'll share my experience anyways.

    I have always wanted Kaia to be fully included, and she is. She goes to the same Catholic school as her brother and is in Senior Kindergarten (our Kindergarten is split into 2 years, Jr. & Sr.). Our Catholic school board supports a fully inclusive setting in all of their schools, which means there are no special ed classes. At all. In Kindergarten kids are with their classmates 100% of the time...they don't have any pull-outs. Once they hit grade 1 then that's when pull-out instruction starts, but time and frequencey depends on the individual child's needs.

    Kaia does have an EA (ie teacher's aide), although "techncially" in the school's eyes the aide is not specific for her, she's a classroom aide. BUT, that aide would not be there if Kaia was not in the class so basically the aide is hers. The aide is there to keep her on task if needed and help with her work if needed. Kaia is aware of the routine by now and knows what's expected of her so she doesn't require as much help as she needed at the beginning of the year.

    I think being in an inclusive setting has been wonderful for Kaia, and great for other kids as well. Kaia is very much motivated by others so the peer modelling is awesome, and the other kids get to be more aware and accepting of differences.

    I beleive that only YOU know what is best for your girls and what kind of environment is best for them to thrive in. Fight for what you beleive it.

  13. I can relate to your apprehensions! Josie will be transitioning into a "typical" classroom setting this fall in Kindergarten! We have not had her transition meeting yet, but I will be demanding an aide for her. While I don't know if she will need a full-time aide, there will be another girl with DS in her class also so the other parents and us think to start with they could share an aide to see how things go. There is a lot to talk about with the school.

    Right now, Josie goes to a special needs school! Strictly ONLY kids with special needs attend there. We did this because they offer an all day program that our local elementary does not offer for preschool. She has done amazing there, but we all agree (current school, future school and us) that she is ready to transition to a "typical" setting!

    I am nervous beyond belief. I had a hard time sending Josie to where she is now because I didn't think she would do well there, but now I am anxious for her to leave! We are all in the same club there! We will stand out in our local school..... but whose to say that Katie and Owen won't stand out for one reason or another!

    Anyway, I am interested to read all the responses to these questions! We will be there in a few months!!

  14. Sorry, I mentioned the link because of the online discussion group, they discuss IEP's, school issues quite a bit. You can sign up through the website if you wish.

  15. I want to go back and look at all the comments; but I thought I would quickly give you a couple of my thoughts. Sadie is in SDC Kindergarten this year with partial mainstreaming into general ed. We did this with the thought that she would be fully included in first grade next year. At the beginning of the year she was still young, and although academically she is doing really well, she did not have the personaility she needed to be in a large (up to 36 kids). If she doesn't hear instructions or needs more help she won't ask for help... she shuts down. That being said...

    Our plans have changed. She has learned a lot this year and is speaking up for herself as well as understanding tasks quicker. However, I know she is still academcially delayed (and probably always will). So, we have decided to go with Full Inclusion REPEATING KINDERGARTEN with a aide. This aide will mostly be there for safety (she is a runner) and to help adapt the curriculum for her learning style. Also, her fine motor skills are not where they need to be and I don't want her physical weaknesses to hold her back academically.

    She will still have an IEP and still be part of Special Ed. As for your other questions... just remember LEAST CONSTRICTIVE ENVIRONMENT... what ever that means for each of your girls you have the right to it and the school has to support you.

    I thought I would link a post I made after meeting with Sue Buckley the leading force in the UK for our kids. Also you can look on our learning Program website for more info.


  16. Here's the link for the learning program... you maybe able to find some good resources on adapting curriculum and full inclusion.


  17. You know, when I read your blog I always think how lucky those children are that God led you all to each other. Just the fact that you're struggling with these issues confirms that. Good luck.

    I always stress to my kids the way they're similar to people who have differences, not the way they're different. That's what really matters, isn't it?

  18. Mayson will be mainstreamed. Thats what our school district does. She will have her own one on one Para if needed as well. She will be pulled out for speech, etc. Not all kids with DS are even in the special Education rooms. They spend as much time as they can being integrated at our school. They go through the lunch line like the rest of the kids but usually have a para sitting with them. Some ride a regular bus and some ride the special needs bus. It pretty much depends on the childs needs. Mayson has a whole other year of preschool but I am already apprehensive about the whole thing! Mayson is very out going so I think she will be fine with the integration part and she learns so much from her typical peers but she is soo tiny! The nice thing is she is her preschool is in the kindergaraten wing at the school she will go to through 4th grade. Everyone knows Mayson already due to her older bro and sis going there. They know she has DS but the kids really dont treat her differently. Hang in there Bethany, Your girls will do fine!!!! We are all in this together thats for sure!!!!!

  19. 1) Will they be mainstreamed into a regular kindergarten classroom? When Noah started school here, kindergarten was 1/2 day. He went for 1/2 day with a full time aide. The following year kindergarten went to full day so we decided to send him again so that he would get more out of it and it was the best thing we ever did.

    2) Will it be possible for them to have an aide in said kindergarten classroom? Noah has had a full time aide in every grade that he has been in and he will continue to have one if I have to RIP an arm off of someone. There is no way on God's green earth that he could possibly do his work without an aide. He is mainstreamed in the main classroom, but is taken out for special ed and some reading. He is with the other students 75% of the time, but he is on his OWN agenda, meaning if the class is doing something that he could not do, he will have an ajusted version of it for him. Example: They are on multiplication and division and he is on addition and subtraction.

    3) No matter their placement ... and as long as they have an IEP, I assume they will be considered part of the special ed program? As long as they have an IEP, yes they are considered on the Special Ed program. Sophie has 2 friends who have IEP's because one is behind in reading and one is just delayed. Sophie had no idea they had IEP's until this year (10th grade).

    4) Being part of the special ed program, does that mean they will always have to ride a special ed bus? What if they have an older sibling or buddy that will take care of them on the regular bus -- then can they ride it? Noah only rode the special ed bus for his first 1/2 day of kindergarten. Since then he has been on the regular bus with all the other kids. This was our SCHOOL'S decision, not ours. They came to us and said they could not see putting him on a special ed bus with 3 children, when 95% of his class would be riding the regular bus. I totally agreed with this. He isn't disruptive and doesn't have behavioral problems on the bus, so they have no problem with this. Until this year, he rode in the front seat though, just so the bus driver could keep a better eye on him and I felt safer. This year he rides in the back with his typical friends.

    5) Where do they sit in the lunchroom? With a kindergarten class or with the self-contained class? Noah has eating issues. He hates loud noises. He loves his aide to death and she is almost like a grandmother to him, but she also doesn't let him get away with anything. Some days he just wants to sit with his friends (his friend Ben is proud to open Noah's jello for him every day ;)) but some days the noise is just too much and he will ask his aide to go eat in the teacher lounge with her, which she LOVES, so they do. Our school is not black and white with things. If something works, then we go with it. If we have a suggestion, they try it. They are up for anything suggestions we have to help Noah learn everything he can and be happy in his surroundings.


  20. Brian and I learned some disturbing news this weekend: apparently in our county, once you're done with pre-K, the IEP team chooses the right type of environment for you (like inclusion, contained, something in between). Great. But then they tell you what school in the county has that program. This means your child can be forced to switch schools ... See Moreevery year if the classroom set ups change. We have some friends who are ahead of us and who I'm watching closely to see how this works. The entire idea of it is insane - they don't expect typical kids to change schools - why should my kid (who would certainly not benefit from constant disruption) have to do so? We have time to figure it out but it's hard not to be pissed already!!


  21. Wow...I could write a novel...but since you asked :)...Olivia started her school experience at 3 years of age. We got her into Head Start (a program for the under-privilaged...she qualified due to her special needs) We wanted this as opposed to the countie's special ed. day class. She thrived in Head Start. She did not have a 1-1 aide, but the ... See Moreclass set up allowed for a teacher and 1 aid to 20 kids...thus it seemed to work out.

    Kindergarten was a disaster! Our district told us she would be mainstreamed....which comprised of spending her day in a special ed room with children much older and physically larger, with varying special needs of their own. She was bored, became naughty and started throwing temper tantrums. We found that she was being separated from the other kids (as a disciplinary action) on many occasions and her mainstreaming consisted of going to a kindergarten class maybe once a week...which was confusing for her to say the least & brought on more outbursts. We fought all year long to have her fully included in a regular class (with the stipulation of a 1-1 aide for success).The school psyhcologist said that she would never be included, that the children would know she was different and ridicule her. We were told that she couldn't hack it behavior wise....due to what they had seen of her in the special day class. We had to hire an advocate to insure that her rights would not be violated. Believe it or not....it took that whole school year to get her fully included. She began the 2008-2009 school year, repeating kindergarten (as she never really had the experience due to the way the special ed class was run). What an amazing difference! It was awesome! She was loved and accepted by her classmates (and yes, they were perceptive enough to know that she was indeed "different") She was invited to parties, ate lunch with her peers in the cafeteria and held hands with her little gal pals (just like any other kid). She was shown compassion & kindness and I would like to believe that she not only learned much from her peers, but in turn they learned how to be finer young people as well. This year, she is in a K-1st combo class (as a first grader) and once again has a 1-1 aide. She is doing even better this year...she is making amazing strides! She gets pulled out for speech once a week and also gets some adaptive PE to help with her gross motor skills. Otherwise, she is fully included all day, every day! She is happy to go to school (just like she loved going to Head Start). Inclusion may not be for everyone, but I believe in most cases, it should be the first choice.IMHO, the key ingredients are an enthusiastic teacher and a 1-1 aide to make sure your child's needs are addressed and the teacher is not distracted from the other students. When the school district sees the success, they can no longer argue that inclusion doesn't work....it can & it does!


  22. I forgot to say...Olivia never takes the bus as we live behind the school. I'm not sure what I would do if she needed to ride one...depends on how far, if she had sibs going on the same route etc. Lunch should always eaten with peers as well as playground time spent in the company of peers. Aide should be there to help should the need arise.


  23. @Maggie Moore... Not sure which county you are referring to...but remember that you and your husband ARE a part of the IEP team and nothing should be allowed to take place withOUT your consent!!!

    Which leads me to another great point...if you aren't already, NEVER sign an IEP *at* the meeting. You have three days to sign, so always take it home, ... See Morelook it over and take your time...away from the *stress* of the meeting...to get it right!

    It's also good to bring a tape recorder (if you feel the need), but you must notify the administrator ahead of time as they have the right, and will want to make a tape of their own as well!


  24. @Sandi - thanks we're in Georgia. I know we're part of the team - the issue is that the type of environment we choose her to be in may not be available in the same school every year. Apparently there's quite a bit of bouncing kids around and opening/closing classrooms here. We're a few years out from doing this (our Emlyn just turned 3) but believe me nothing will happen without our consent!!


  25. @Maggie - Gotcha! That DOES stink... I'm sure you would have a bit of a battle, BUT should be able to get the program that your daughter needs at her home school, for the duration! That is after all the Least Restrictive Environment (LRE) which is part of IDEA!! Sounds like you are on top of it though! Go get 'em :)


  26. I feel ya on this one. It is my goal as well for Ella to be in mainstream Kindergarten with an aide. Right now she is in mainstream preschool (like a Headstart class,) with an aide, and does really well. Of course right now she has a fabulous aide, that may not always be the case. She is pulled out for speech and PT. I think I will keep her in preschool for an extra year because she will turn 5 two days before the cutoff. Anyhow, that has always been my plan..... Hunter is in Kindergarten now too and when I go in there I think, "how in the world will Ella be in this class??" though I also thought that about mainstream preschool. Hunter has homework every night in Kindergarten, practicing their writing, reading and math skills. I am amazed at what Kindergarteners do, and with that I cannot imagine Ella able to do these things in 1 1/2 to 2 1/2 years, I mean seriously we are working on talking!!!! The bus thing, I have a bus phobia. I guess perhaps if she was able to ride with Hunter I may do it.....

  27. I don't have a child with ds but we do have a 1st grader with ds this year in our small school. He has a 1:1 aide, he goes to recess and lunch with the other kids but mostly stays in special ed. When I subbed for 5 weeks in 1st grade I didn't see the kids treat him badly... they loved helping him. We also have a boy with autism and he has a 1:1 aide.

    About the special ed. going with the ISP.. yes it does. My daughter is in speech and she has one but she doesn't go to special ed for anything. With her ISP her spelling list/words are cut in half so instead of 20 words she has 10 words. If she needs help with reading the teacher/aide can help her more.

    Not sure how big your school system is but ours is small... meaning maybe 450 to 500 students from Headstart to 12th grade. They seem to really work with special needs and not fight parents on things. Good luck and I know you will might the right choices with the girls!!

  28. I think it depends largely on the district. Megan, our daughter with DS attended public school, but was in multi-disabled classrooms with some interaction with the rest. In elementary she was mainstreamed a bit more for lunch, recess, bus, etc. In junior high and high school, she was still in the MD classroom, but attended band, choir, home ec, art, p.e., classes with the other students. She knew a lot of kids in the district who still talk to her outside of school. Meg graduated a couple years ago. For the most part I thought it was successful. What is important is finding the best fit for your daughters. Megan's favorite places, though, are Special Olympics and Enrichment classes. Her three best friends also have DS and they do a lot together. She attended Prom with her boyfriend who also has DS. Some things have been mainstreamed and others have been for special needs. I fought for the things that she wanted to do, like band in school. I did find as Megan grew older, she identified herself with other DS kids. If she saw someone with DS that she didn't know, she would say, "See that kid that looks like me?" She's happiest with her friends and situations that meet her abilities. As a mom, you will know what is best for your girls.

  29. Ok my answers:

    1) Will they be mainstreamed into a regular kindergarten classroom? Kayla was mainstreamed both in NM and in MD. Although she started out the K year in NM more of a 'mixed' mainstream I'd guess you say - she did get pulled out to the special ed room to work on things (there were very few kids in that room; and while I felt conflicted about it I know how easily distracted she is). Her reg. K room had a teacher and an assistant. I asked about an aide to help her focus and stay on task in the classroom, they didn't feel she needed one to shadow her, but they got an aid in the special ed room (which I was confused about because there was already an assistant and a lot less kids, but anyway.) When we moved to MD she was in an 'inclusion classroom" with 4 adults. The reg ed teacher and her assistant, and the special ed teacher and her assistant. This year they don't have that model type classroom. She's in reg K classroom w/teacher and assistant (the special ed teacher floats between grades and is in there with Kayla for some of the instruction.) So in NM she spent a lot more time in the special ed room, but did the 'electives' with her class and did lunch/recess with her class and circle time and writer's workshop w/her class. She was also pulled out for PT/OT/ST. Here she gets some OT in the room, but some pull outs...and pull outs for ST and adaptive PE...but she still has reg. PE w/her class too.

    2) Will it be possible for them to have an aide in said kindergarten classroom? Oops answered that one above...I have heard of plenty of other kids who successfully received a one-on-one aide, so it is possible, I think it's usually a fight to get one though, but it can happen.

    3) No matter their placement ... and as long as they have an IEP, I assume they will be considered part of the special ed program? I think so, but I'm not positive.

    4) Being part of the special ed program, does that mean they will always have to ride a special ed bus? What if they have an older sibling or buddy that will take care of them on the regular bus -- then can they ride it? No I don't think that means they HAVE to ride the special ed bus - I'm pretty sure it's entirely up to you. When we lived in NM we lived on base and actually the only buses for the kids in school on base were the kids in the DD Preschool program. I have no idea why they qualified to have a bus instead of walking or being brought to school like everyone else, but they did. Kayla did ride that bus because she absolutely loved it - but there was no bus when she went to K there.

    When we moved here I drove her to school for the first 5 months; I just wasn't ready to put her little self on a bus to school (the one on base in NM was different since it was on base, I just didn't worry). At first I didn't want to put her on the special ed bus here because of the 'stigma' associated with it...that's just something I need to get over. I thought about the reg bus but that is for kids in grades K-5th and there is no assistant on the bus. It just freaked me out a little to think of putting her on a bus like that; would she be able to tell me if something happened? With no seatbelt would she just keep getting out of her seat? I was just not comfortable with it. I knew she loved riding the bus so I finally got her on the schedule w/the special ed bus - there is an assistant on the bus (they are an older married couple) and only a handful of kids on the bus, like 3 or 5 including Kayla! and it has seatbelts. I feel she's much safer ... as she gets older I'll have to make that decision again and not sure what I'll do. If she had an older sibling I probably wouldn't be as concerned.

    5) Where do they sit in the lunchroom? With a kindergarten class or with the self-contained class? Kayla has always sat with the K classes she's been with.

  30. My original comment was too long to post (sorry about that!) here is what I cut out:

    None of those seem silly AT ALL! All very valid questions. This has been our experience (and for what it's worth this is Kayla's 2nd year in Kindergarten - she has a July bday and could have gone to 1st grade this school year, but I felt like she would have been a VERY young 1st grader and would benefit from another year of K).

  31. Your concerns are justified Bethany!! Lily is going to start JK in Sept, but we have applied to have her go to our local KidsAbility school because we are not ready for her to start "regular" JK. She probably is, but I am not! My fear is that she will get lost in the group. She will be in a full "inclusive" environment, which I do like, but because she is so well behaved and will try to follow along, I am afraid she won't get the help she needs. At the KidsAbility school, it is a regular JK program but the classes are smaller and she has access to PT, OT and Speech. The following year, she will go to our regular home school, and hopefully have access to an EA, but this all depends on funding and how much she actually needs. It makes me nervous! Just another perspective from a Canadian!

  32. Hi Bethany,

    Our family is located in Ottawa, On. My husband and I felt that Gabriel would be okay in a regular classroom so that was our focus. We went to the public school in our neighbourhood for an interview with the school principal and resource teacher. Both my husband and I felt that this particular school was the wrong place for Gabriel.

    So, Gabriel is now enrolled in the JK program at our nearby Catholic school. For both my husband and I, we feel that it is the absolute best place for him. My advice is to follow your instincts...

    So, with a F/T educational assistant for him, Gabe attends Monday to Friday, for two and half hours per day. He participates in all aspects of the day, just like his typical peers. I remember how we were asked to have him practice printing his name at home with an uppercase G and then the rest in lowercase. I said, "Well, he can spell his name! But he does it in all uppercase." And the reply was that he was to do it like all the other kids...So, really, there is quite a learning curve for us, as Gabe's parents, too. He does ALL of what his typical peers do, too, like going to the gym, or going to assemblies, participating in calendar time, and completing workbooks assignments. (IE. printing, counting, patterning)

    Gabriel does have an IEP and I suppose that it separates his expectations into the special needs group. I really don't have any problem with it because that is simply how it is...However, both my husband and I keep our expectations high for Gabe and the IEP doesn't define what he can or will do while at school.

    I hope I have helped. It's a scary journey but once you're on the path, it really is enlightening!

  33. Oh my- You already have a ton of feedback for this. I'll try to keep this short...

    Max is in 2nd grade this year. When he started K he did half day (in the PM). At our school they have half day (am and pm) or full day. Max had a Para with him full time, except during his sp. ed. times. I took him 20 minutes early to school so he could receive his special ed (resource time) before school started. Then he was only pulled out for Speech during the day for 20 minutes and OT a couple times a week. This worked well for us.

    He did ride the bus the last half of the school year- the school really pushed this. But I am thankful they did. It worked out great. He rode the bus to 1st grade but I picked him up from school since I was already there getting Sam from K. Max did ride the little bus. I am not sure what would be a standard for the little/special bus here. It is really only pre-k and maybe K kids who do ride that bus. Only a few kids ride it though. The majority of kids at our school are taken and picked up by parents. If you live within 2 miles of the school then you have pay for the bus. Crazy! Everyone at our school is within 2 miles of it. There is 1 bus that goes to our school (besides the little bus) and not many kids ride it. I would say riding the (little) bus would be a district thing and even how able/disabled the child is.

    Max eats lunch with his class. The first part of 1st grade he was given extra time on my request. He is such a SLOOOW eater! He has if figured out now and eats within the normal limits.

    This year as been kinda rough for him. Last year he was pulled out 1 to 1 1/2 hours for resource time, and 20 minutes for speech everyday. (He does not need OT or PT anymore-- OT stopped in 1st grade, about half way through. So he did get pulled for that a couple times for 20 minutes a week.) This year it started the same. But Max has some behavior issues so it changed rather quickly. He now is pulled out for around 3 1/2 hours or something crazy like that. I think this totally depends on the teacher. I got the feeling she did not really want him in there (even with a para) and there was only so much I was gonna fight to keep him where he was not wanted! He seems to be doing better now so I guess he likes it better. I guess he is considered mainstreamed for part of the day.

    He has always had a one-on-one para since he started K. It helped that he was busted at K-roundup roaming around outside by himself. The kids were supposed to be with teachers doing activities. I was fuming and let the principal know all about it! At our IEP meeting before K, the principal is the one that said, "he will definitely need a full time para!"

    Overall, I've been happy with our school. This year there has been a few issues.

    Those are all great questions and I know your not the only one wondering them.

  34. Ok, it wasn't really short!

    Also, Max is loved at school. Everyone knows him and always says HI/Bye, or whatever to him. Seriously, I have no idea why they love him so much. He doesn't talk a whole lot and can be a little mean at times. But whatever- they love him and that is what matters.

  35. Aleena is in the regular kindergarten class and the extended-day kindergarten class - this equals all day. She has a wonderful full-time aide with her. She is pulled out of class for PT (15 minutes every other week), OT (20 minutes weekly), SpT (30 minutes twice a week) and a half hour of learning support everyday. The learning support time is just extra help with all the various subjects they work on in class. She eats lunch in the cafeteria with her classmates. She goes through the line, gets her tray and food just like the others. She went on the bus at the beginning of the year. It did not go well -she wouldn't stay in her seat. We drove her for a few months and now we are starting again, just in the mornings, on a small bus with the goal of moving back her back to the big bus eventually. I think it will be a tremendous help for your girls to have a sibling on the bus!

    They WILL stand out and be different. That's just the way it is. But the children will come to understand them and accept them. A couple of months ago, Aleena had been out of school almost a whole week due sickness. When she walked into the classroom, all the kids wanted to hug her! She was missed! Today, when I picked her up at school, a little girl (whom I didn't know and appeared to be, like, a 4th grader or so) said "hi" to Aleena and came over to her and asked her for a hug! We are in a small elementary school and it seems everyone in all grades knows Aleena!

    It will be an interesting experience for you! You will view the classroom from two different perspectives, having a typical child and children with needs. It will probably give you good insight. Also, I'd advise spending time in the classroom with your girls. It's good for the kids to see you and how you love and relate to their classmate. And it's just good to know the atmosphere of the classroom, so you can make the best chioces for your girls. Spending time observing in the classroom earlier in the year opened my eyes to situations that need attention. It will take time, but you and the school team will find the best ways to make school successful for your girls.

  36. My oldest has Ds and just started Kindergarten this year. He is in a "regular" class with an aide who is with him the entire day. We have all day kindergarten. Once or twice a day he is pulled out to the "resource room" to work with the special ed teacher. It took us a couple of tries but we finally found an aide that works well with him. The Special Ed teacher is the one who asigns the aides. The progress he has made since starting school has totally blown us away.
    I really worried about lunch time. He can be a bit of a flight risk at times. Initially the aide sat with him but as he became more familiar with the rules of the lunch room I think she stands off to the side of the room and he sits with all the kids in his kindergarten class.
    Regarding the bus situation. Since he is the oldest I'm not sure what things will be like when his sister starts Kindergarten. We had the option to have him bused. With two younger onse it is just easier for me to have him ride the bus.
    We are very fortunate to have him attend such a wonderful elementary school. His grandmother teaches 2nd grade at the same school so he has lots of "eyes" watching out for him. The principle told me, before he started school, that we would find that kids would most likely become over protective, trying to help too much, than the opposite. I feel grateful that that is the case.
    Our experiences have shown me, with other kids their age, that they don't really realize that they are "different." They are just someone else who has a lot of energy and is a ton of fun to play with!

  37. Struggling with the same questions....Our Hopey turns 5 in September. I am afraid to ask what the school has planned for her. Hope is still not speaking, so I wonder how she could possibly fit into kindergarten? In many ways, she is still such a baby. I don't want her to get swallowed up. Thanks for sharing.

  38. Hi! I didn't read through all these answers, but wanted to chime in.
    My Matthew is 7 and is in the 1st grade. He has been attending the same school as his brother (our home school) since he was in the Young Learners class (a 1/2 day K), so this is his 3rd year. He is in a typical classroom and only this year has been going downstairs for a "pull out" that is to enhance his fundamentals. He does have a one-on-one aide that is with him, mostly to keep him on track and from wandering. She doesn't stay glued to his side and will help out where needed with him or the others. He sits right there in the room with the others - not off to the side by himself. He does have an IEP, and I really don't know if they consider him "special ed". To me it doens't matter. He's were he should be, is learning and accepted - it's just a label. They did ask about the spec. ed bus and we haven't used it. We did tell them he would ride with his big brother on the big bus, but he hasn't yet. I work at the school also, so they ride with me. Matthew does sit with his 1st grade class in the cafeteria and did last year in K too.
    He is very, very much accepted with his peers. It really warms my heart when we get to school and several kids run over to the fence to tell him hello. We can't walk the hallways without kids tellinghim "Hi". The older kids know him as Ryan's little brother and watch out for him.
    I remember struggling with all this years ago too, but so far we have had smooth sailing! :) Hope that I helped some! :)