Is integration better?

[Thing1Thing2]

My 4 year old son has Aspergers. At our recent visit with the Dev Ped, she said she was going to write a letter to the school district asking them to put him in their Special Needs summer program.

She said that she doesn't think 3 days a week is enough. She wants him in there 5 days a week.

First off, it's going to be a shock to me to not have him home most of the week. I probably should have mentioned it to the doctor, but I was surprised at what she was saying and not very sure how I felt at the time.

Next off, I'm wondering if a "special needs program" is going to be a combination of children who may be worse off than he is, whom he will pick up behaviors and such from. She said it would include OT/ST and a sensory gym, but does that happen at the school or offsite?

She also is requesting that he has a "Autism Consultant" at school with him.

I am so confused, and I realize I should have asked her what all of this is, but I was really just trying to keep my DS calm and make sure we got some kind of services. I didn't expect her to offer so much, after going through so much just to get a Dr. to see what we were seeing.

DS is very bright and wants to do well. He is a quick learner, but he picks up behaviors very easily. Any ideas how can I make sure that he is put into the right environment for him?

[SpottedFoxx]

Originally Posted by Thing1Thing2 

First off, it's going to be a shock to me to not have him home most of the week. I probably should have mentioned it to the doctor, but I was surprised at what she was saying and not very sure how I felt at the time.

I hope this doesn't come across as mean but... this is not about you.  It's about your child and what is best for him.  If he needs to be in school 5 days a week, then you will have to find something to do with your free time.  You may even find an opportunity to volunteer at the school as a classroom Mom (something I wished I could do but work full time).

If your son was neuro typical - he'd be in a classroom with smart kids, not so smart kids, well behaved kids, nightmare kids, funny kids, sad kids, kids from different cultures, religions, ethnicities, etc.   Unless you homeschool your childm (and unless you are qualified to teach and have a background in special education, I wouldn't recommend it), your child is (thankfully) going to be exposed to all kinds of kids.  Yes, he may pick up on some bad habits.  NT or autism or whatever, all kids are exposed to it in schools (public and private).  Your job as his mother is to shut those down immediately.  By having open communications with his teacher(s), they can also shut those behaviors down as well.

My son has been in full day school since he was 3.5 years old.  Yes, he's picked up bad habits and words from time to time but, by being in a self-contained special education classroom, he's also learned empathy, kindness and being part of a team.  Not something he'd learn, necessarily, in a NT classroom. 

[QueenOfTheMeadow]

Ditto to everything SpottedFoxx said. 

It is hard to let go of that extra time with your son.  I remember feeling that way the day I sent each of my kids off for their first day of K.  I missed them, but they were happy, and I found lots of stuff to keep me busy and happy.  I even rediscovered a few of my old hobbies! 

but, by being in a self-contained special education classroom, he's also learned empathy, kindness and being part of a team.

And this strikes me with my ds1 also.  He's 13 this year.  He is one of the most empathetic kids I know, because he has seen other kids struggled and been able to help them when they need it, and get support from them when he needs it.  Yes, he's picked up some not great behaviors here and there, but a lot of those came from the NT kids, because there wasn't as much teacher support with regards to behavior in those instances (lunch, recess, etc)  He's actually going to be a conselor in training this year at a summer camp, and I really believe that the things he has learned over the years of dealing with other special needs kids is one of his biggest strengths. 

Now, I'm not saying just let him go, no questions asked.  Call the dev. ped. and get your questions answered.  Speak to and visit the class and teacher your son will be with.  Give it a chance.  You can always pull him out or cut down on the time he spends in the class if you need too. 

[Linda on the move]

I think that figuring out what is the best educational option for a child is difficult. I can't make an argument for "integration is better" or "self contained is better."  It really just depends. But I don't think that is the real question for you right now.

I think that the real question for you is: "of the options you have right now, which is the best for your son for right now."
 

Being in a special needs preschool doesn't mean that a child will be in a self contained classroom when they are school aged. Avoiding a special needs preschool doesn't mean that a child will be more likely to successful in a mainstream classroom later.

I found that I became a more engaged mom after my kids started school, that the quality of my parenting went up when I started getting REAL breaks and getting to take time to myself.

Although my ASD has sometimes tried out some odd behaviors she observed in other sn kids, it really pales in comparison to what my NT child has picked up from her NT peers. She is much more wired to pick up on social cues and try to fit in. Just because behavior is age appropriate and typical, it doesn't mean that it is desirable. Overall, I've found raising my ASD dd to be more challenging than raising her NT sister, but this is the one area where we parents of ASD kids actually get a bit of a break.

I think it also helps to soften out view -- I see it as "trying out a behavior to see how to works for them". We can guide them to more desirable behavior.

Have you had a chance to tour the school or meet the teachers yet? That might really help.  My kids both attend a private school that has a high percentage of SN kids. I love the school and have tremendous respect for the teachers. My advice is to check out the program and then decide what you think.

[Thing1Thing2]

No, Spotted Fox, your comment doesn't sound mean - no worries. But what you said did really make me evaluate my feelings towards this. I think I gave the wrong impression in my original post. Please bear with me, as its hard for me to understand my emotions as well as put them into words.

I think its hard for me because I feel like I know him the best, and I don't trust anyone enough to just "turn" him over to.

Another thing that is difficult for me is the feeling like I've failed him in some way. Most times, especially lately I feel like I do not have the tools to deal with his behavior. Yet I know that if I was getting more sleep and didn't have my younger one I would be able to do my best job possible for him. I'm always attaining to that goal - but what hurts the most is I'm not enough for him. Three days a week, I feel, would have been a supplementation. But 5 days a week, to me, feels like a validation of my own failure.

So, reading this back - it sounds so contradictory. I feel I am the best person to help him, but yet I feel like I am not the best person to help him. This is the story of my life.

Of course, my main concern is for his welfare and these are all tiny issues that will be resolved in time, Im sure. In fact, I shouldn't even be complaining! How silly is it that we fought for 2 years to get help and now that its handed to us, I have some regrets!!!

I guess the main concern is that I'm not sure what they will be doing to help him. In some subjects he is very bright. (Puzzles, math and language/reading). In other things, he needs alot of help (stimming and sensory/vestibular issues). If he is in a classroom with only other SN children, will he be able to get the attention and help he needs? Will he *ever* be able to join a classroom with typically developing children?

Queenof themeadow, I will take your advice and ask the dr. these questions. Also, I didn't know I could cut down the days if I wanted to. This does make me feel a little more comfortable.

SpottedFox, you said your son was in day school since 3.5 -Im sorry - I forget what Dx your son has. Could you remind me?

I guess by posting on here I was hoping for info such as what everyone elses LO's experienced going to SN programs. How it helped. How it didn't help, and if integrated classes are better. And if anyone knows what an "autism consultant" does.

Originally Posted by SpottedFoxx 

I hope this doesn't come across as mean but... this is not about you.  It's about your child and what is best for him.  If he needs to be in school 5 days a week, then you will have to find something to do with your free time.  You may even find an opportunity to volunteer at the school as a classroom Mom (something I wished I could do but work full time).

Originally Posted by QueenOfTheMeadow 

Now, I'm not saying just let him go, no questions asked.  Call the dev. ped. and get your questions answered.  Speak to and visit the class and teacher your son will be with.  Give it a chance.  You can always pull him out or cut down on the time he spends in the class if you need too. 

[Thing1Thing2]

Linda, you posted as I was responding to other posts.

Thank you, thank you, thank you for making this much less complicated for me. You are right. I am jumping way ahead - when right now my DS just needs help.

Your answer also cleared up concerns I have about DS ever being able to join a different kind of classroom when school starts.

Im realizing that all these worries came about from a SN teacher that I know personally who told me "Don't *ever* let them put him in a self contained classroom."

I will call the school and do a tour, that sound wonderful! And thanks again.

Edited by Thing1Thing2 - 6/14/12 at 10:54am

[SpottedFoxx]

I agree with Linda.  You may walk into the school and just fall head over heals in love. 

My son has a genetic deletion at 16p11.2 which causes severe ADHD, he is a wild sensory seeker (SPD), and a significant speech delay (apraxia).  I could have written that second post... word for word, when my son was younger.  It's scary as hell to turn your child over to strangers under regular circumstances but when your child has special needs.... terrifying!  I know school is about over or may even be over.  Maybe they offer summer programs that you can check out.  Bring your son too!

When we put him in the special education preschool (which was an inclusion program btw), we also had to change day cares too.  Talk about messing up my kid's world.  We walked into the day care center.  Met the woman who was to be his teacher (who I love, is my parenting mentor and I just think she's incredible), sat on the floor and refused to leave.  I knew it was a safe place for him. When we went to see the school (he had to be bused both ways - yikes!), he flirted with the teacher and didn't want to leave.  These women are amazing teachers.  I will not allow my son (yet) to go into a classroom where I haven't met the teacher.  I'm pretty good at first impressions, as long as I trust my gut, and I'm very excited for him to start school in the fall.

[sbgrace]

I did not send my son to the school system at 3 though it was recommended. I do not regret that. We did work on autism (RDI-which is parent oriented and occurs in the home). Floortime and Hanen programs also center on parent as therapist. I'm not saying the school system isn't great and isn't the right choice for your child. In our case I was not hearing good things about the preschool special needs system here. I did not have an option to try something for a summer either like you have. I am just wanting to say that not all autistic kids need to be in 5 day a week away from home programs to thrive. Some doctors think they do (we had one) but others feel just as strongly that they benefit from parent targeted approaches.

[Thing1Thing2]

Ahh yes, now I remember your DS, Spotted Fox. Thanks for the reminder. The program the doctor is recommending is a summer program. Like SBGrace mentioned, I do feel good that I don't have to commit to a full year just yet.

SBGrace, I have heard that the SN program here in this district isnt the best either, but we just moved from an even worse school district. So this is better than the alternative.

I have thought about homeschooling, but with my second DS (who is high needs), I barely have the time or energy.

Ok, DS1 just got out of the tub and wants to play. Yes I know its 11:00 at night. He doesn't sleep and no amount of anything helps him until he winds down naturally. An acquaintance of mine actually just told me "you run a nut house" and "1 week with your kids and I'd have a smooth, tight ship running." Hahaha - her kids are TD. I'd like to see her try!

Oh- ETA I would like some more info on RDI if you have it, SBGrace. Thanks!

Originally Posted by SpottedFoxx 

I agree with Linda.  You may walk into the school and just fall head over heals in love. 

My son has a genetic deletion at 16p11.2 which causes severe ADHD, he is a wild sensory seeker (SPD), and a significant speech delay (apraxia).  I could have written that second post... word for word, when my son was younger.  It's scary as hell to turn your child over to strangers under regular circumstances but when your child has special needs.... terrifying!  I know school is about over or may even be over.  Maybe they offer summer programs that you can check out.  Bring your son too!

When we put him in the special education preschool (which was an inclusion program btw), we also had to change day cares too.  Talk about messing up my kid's world.  We walked into the day care center.  Met the woman who was to be his teacher (who I love, is my parenting mentor and I just think she's incredible), sat on the floor and refused to leave.  I knew it was a safe place for him. When we went to see the school (he had to be bused both ways - yikes!), he flirted with the teacher and didn't want to leave.  These women are amazing teachers.  I will not allow my son (yet) to go into a classroom where I haven't met the teacher.  I'm pretty good at first impressions, as long as I trust my gut, and I'm very excited for him to start school in the fall.

Originally Posted by sbgrace 

I did not send my son to the school system at 3 though it was recommended. I do not regret that. We did work on autism (RDI-which is parent oriented and occurs in the home). Floortime and Hanen programs also center on parent as therapist. I'm not saying the school system isn't great and isn't the right choice for your child. In our case I was not hearing good things about the preschool special needs system here. I did not have an option to try something for a summer either like you have. I am just wanting to say that not all autistic kids need to be in 5 day a week away from home programs to thrive. Some doctors think they do (we had one) but others feel just as strongly that they benefit from parent targeted approaches.

[Linda on the move]

Originally Posted by Thing1Thing2 

Another thing that is difficult for me is the feeling like I've failed him in some way. Most times, especially lately I feel like I do not have the tools to deal with his behavior. Yet I know that if I was getting more sleep and didn't have my younger one I would be able to do my best job possible for him. I'm always attaining to that goal - but what hurts the most is I'm not enough for him. Three days a week, I feel, would have been a supplementation. But 5 days a week, to me, feels like a validation of my own failure.

So, reading this back - it sounds so contradictory. I feel I am the best person to help him, but yet I feel like I am not the best person to help him. This is the story of my life.

...

I guess the main concern is that I'm not sure what they will be doing to help him. In some subjects he is very bright. (Puzzles, math and language/reading). In other things, he needs alot of help (stimming and sensory/vestibular issues). If he is in a classroom with only other SN children, will he be able to get the attention and help he needs? Will he *ever* be able to join a classroom with typically developing children?

I've been there. It was really hard for me to let go, and it was hard for me at first to see my DD start to understand things when other people taught her. I felt like a failure as a mother. I was eventually able to let go of that and just be grateful that there are people who can reach her, that she is getting what she needs, and that she is currently thriving. But I grieved that the way I had envisioned things ended up not being what was really best for her, and that I couldn't be everything for her.

You haven't failed. You've sought out answers and help, and that is what being a mom is. We don't also have to special needs teachers in addition to be moms. We can delegate that job to someone more qualified, who then later gets real breaks from our kids.

When you tour the school, ask your questions. Talk about his strengths and weakness, and ask how they address different abilities.

Right now it is impossible to say what the future holds for him. For my DD, a regular classroom is a difficult place because of her intense sensory issues. So she goes a school with no bells, no slamming lockers, and very small classes. It is a  wonderful school -- so lovely that her sister, who would do well in any decent school, also chooses to attend. A different path doesn't also mean a "lesser" path.

Our experience with public school was that integration to the greatest degree possible was always the goal, kids were mainstreamed as much as possible, and the school was constantly adjusting. It's different once kids are school aged that they have a whole of NT children there all the time. Spending part of the day in one room and part in another is just much easier that way.

(I don't have any idea what an autism consultant does)

[SpottedFoxx]

Originally Posted by Thing1Thing2 

. An acquaintance of mine actually just told me "you run a nut house" and "1 week with your kids and I'd have a smooth, tight ship running." Hahaha - her kids are TD. I'd like to see her try!

Oh please please please please send your kids to her house for a week - she won't last an hour!!!!!  I hate people like that.

[~cassie~]

I had a really hard time with the idea of my son in the self contained classroom.  It was scary, but it was also new, and I don't do so well with new :)  But it was honestly the best thing for him, he flourished with the attention they gave him and he was the highest functioning kid in the classroom(is neurotypical with hearing loss) and he was often the leader and it was great for him!  He picks up bad behaviors easily as well, but he didn't pick anything up from the classroom that we consider bad bc the teachers are very quick to work on any behaviors that are undesireable.  I found they were very in tune to what he needed and even saw some things I hadn't picked up on yet(like his trouble with fine motor) and they really prepared him so well that he was able to then enter the mainstream classroom and did extremely well that following year.

[Thing1Thing2]

Ahhhh. Just when I started to get used to the idea of sending him off, the school district  tells me that "it's impossible to get him into the summer program".

First off, he needs a full evaluation, which they say will take a while (no longer than 60 days). But at our last appointment, the Developmental Ped told me we could bypass the eval process with her diagnosis and a letter to the school district.

Secondly,  I asked them if we could quickly get the eval done. I told her Im available to come every day if we need to. She said no, and that the only children who are in the summer program are the ones who have "already been recieving services and have shown that they will regress if they don't recieve summer services".

Either the school district is playing games, or the doctor is uninformed.

Besides that, he already did a full eval with the old school district about a year ago, and at that point he didn't qualify for services.

This is so frustrating I want to cry.

[AbbyGrant]

Originally Posted by Thing1Thing2 

Secondly,  I asked them if we could quickly get the eval done. I told her Im available to come every day if we need to. She said no, and that the only children who are in the summer program are the ones who have "already been recieving services and have shown that they will regress if they don't recieve summer services".
 

Either the school district is playing games, or the doctor is uninformed.

I don't think the school district is playing games. To get services in the summer, a child would have to qualify for Extended School Year (ESY) services which are pretty much what the lady from the school district told you.

Also, as far as I know, they are under no obligation to just accept an outside evaluation without doing their own.

[Thing1Thing2]

Okay, thanks for explaining that to me. Well, I guess I'm going to have to wait until September. I've waited this long, whats a few more months of total chaos?

I say chaos because he needs constant attention and redirecting. Sometimes he is out of control. I'm not sure which behaviors he is doing because of sensory issues and what hes doing on purpose. I was hoping the services would help me figure out how to deal with that part of his behavior. When I'm confused, I would rather be lenient than discipline him for something that isn't his fault - so he runs wild.

Spotted Fox - I would love to send my kids to her house, but her "magical" method is CIO - lol. Goodness, I could get so much "help" from people if I only didn't care about my kids' emotional well being.

"You haven't failed. You've sought out answers and help, and that is what being a mom is. We don't also have to special needs teachers in addition to be moms. We can delegate that job to someone more qualified, who then later gets real breaks from our kids."

Linda, thank you for this. I am finding it easier to allow myself to take a break.

Oh - and the nurse at the front desk told me that an "Autism Consultant" is someone who is provided by the state, who stays in a TD or integrated classroom with the child and helps the teacher to understand how to best help the child, or intervenes in matters pertaining to the childs needs. We would only need this if he enters a TD classroom in September.

Thanks for the replies on this subject. No matter what kind of classroom he is placed in come September, I now feel comfortable and at peace with it.

[isisreturning]

OP - you've already gotten a ton of great feedback - I hope it's been helpful. In my experience it's been very helpful to have other folks working with my DD - they see things I don't, and they have training and skills that I don't. Each of us reaches her in different ways, and I get new ideas from them. 

I wanted to touch on the issue of the dev ped wanting 5 days a week. I think there is this HUGE push in autism land for LOTS of early intervention, because research is showing that many kids who get lots of therapeutic intervention early on benefit tremendously, learn skills faster, manage symptoms better, and sometimes some symptoms go away. So it makes sense that professionals who are in a position to make recommendations to you are going to recommend whatever is currently seen as being the "best practice."

That is fine and appropriate, but the professional's recommendations are not binding on YOU, the parent. 

If the professionals had their druthers, my DD would be getting about 25-30 hours a week of therapy via special ed preschool and private therapies. We just cannot manage that many hours because we both work full time out of the home and cannot get her to private therapies. So she gets about 17 hours between preschool and daycare (daycare happens to be run by a retired special ed teacher who makes a point to work with DD one one one most days).

I used to be really stressed out, feeling like I was failing my DD for not getting her into the full amount of therapy that had been recommended. But then I came to a place of peace about it. In DD's case, I realized that she really progresses at her own pace, and I became comfortable moving at her speed. She makes gains all the time - not quickly, but steadily. It works for our family. I have confidence that she will eventually learn many of the critical skills that she needs to function at least semi-independently and be safe. 

All this is to say: Come fall, listen to the recommendations from the school district and the dev ped... and listen to your own recommendations about what is best for your child and for your family. If they say 5 days and you only want 3 days, voice that! The IEP process is a negotiation between all the experts to determine what makes sense for the child. YOU are one of those experts. :)

[Thing1Thing2]

Thank you for sharing your experience, isisreturning. Its so crazy how we put all the guilt on ourselves, even when it's physically impossible to attain to what others may want for our children.

I now do understand why the Dr. said she would like to have him in 5 days, because of your explanation. It makes total sense. After all the great advice I got on this thread, I am seeing things in a very different way (and less about me).

I'm so not ready to go through another evaluation. It's so nerve wracking for me, because there are times when DS acts like a perfect child. And then the evaluators get the wrong idea and won't help him. But if they do make the right evaluation of him, he will be seeing as many days as they will allow. I want him to get all the help he can as soon as he can.

[Linda on the move]

Originally Posted by Thing1Thing2 

First off, he needs a full evaluation, which they say will take a while (no longer than 60 days). But at our last appointment, the Developmental Ped told me we could bypass the eval process with her diagnosis and a letter to the school district.

Secondly,  I asked them if we could quickly get the eval done. I told her Im available to come every day if we need to. She said no, and that the only children who are in the summer program are the ones who have "already been recieving services and have shown that they will regress if they don't recieve summer services".

Either the school district is playing games, or the doctor is uninformed.

Besides that, he already did a full eval with the old school district about a year ago, and at that point he didn't qualify for services.

I understand why you are frustrated, but this is all pretty normal. The school has the right to do their own evaluation. Some schools exercise that right, and some don't. But it is their call.

I hadn't thought about it with your first post, but now that I reflect on it, the kids I know who've been in summer programs were already in school year programs. It really isn't the doctor's job to know exactly how all that works, and it sounds like in her enthusiasm to provide you with appropriate documentation to work the system to get services to your child, she has made it sound like she can make things happen instantly, when she doesn't actually have that power.

My experience working with schools is that nothing happens instantly. It all takes time to percolate, but that those letters from doctors DO make a difference -- schools loving having them for files.

I'm sorry that you are on a roller coaster with this right now. I would feel very jerked around in the same situation.

[Emmeline II]

Originally Posted by Thing1Thing2 

Secondly,  I asked them if we could quickly get the eval done. I told her Im available to come every day if we need to. She said no, and that the only children who are in the summer program are the ones who have "already been recieving services and have shown that they will regress if they don't recieve summer services".

Either the school district is playing games, or the doctor is uninformed.

Or neither; the school district may be uninformed (it happens...a lot) and the doctor only has partial information (the school can accept a private evaluation in lieu of conducting their own evaluation--but generally don't.

ESY (extended school year services) is a separate issue than a comprehensive evaluation. Services (therapy, school) over the summer are ESY. Though I don't think that what the school said was entirely correct (my understanding is that you would have to have had a comprehensive evaluation to determine eligibility for special education services, not be required to currently be receiving services); you would have to read the section of your state special education law regarding ESY (and who is eligible) to be sure. Whether the summer break is included in the "60 days" (from your written consent for an evaluation to when evaluation is concluded) is determined by state special education law (the states are allowed some leeway in implementing federal special education regulations). In California the "60 days" only applies when school is in session and does not include the summer break; other states are different; you will have to consult your state special education law (I recommend printing it out). Your state DOE also has to offer parent training in special education services.

Extended School Year Services (ESY) - Wrightslaw.com

Determining Eligibility: How Many Days is 60 Days? - Wrightslaw

Eligibility for Special Education Services: Articles, Resouces and ...

Though your school is entitled to conduct their own evaluation, you are entitled to an IEE (independent educational evaluation) if you do not agree with the school's conclusions. If you make your doctor's evaluation and recommendations part of your ds' educational record (by giving it to the school), it will be more difficult for the school to justify basing their conclusions on a "good day"; and even if they do you are still entitled to an IEE. Also, wrightslaw (in All About IEPs) says that having your (private) evaluator present at the IEP meeting can be more effective that just having their report; considering your ds' history of "performing" well in evaluations it may be a good idea to have your Dr. there. My ds' school accepted the conclusions of our private evaluation so having the Dr. there wasn't necessary for us.

Knowing your rights is really important! I recommend reading a few books:

All About IEPs (I just finished this one; an easy read in question & answer format)

"Wrightslaw: From Emotions to Advocacy"

"Wrightslaw: Special Education Law, 2nd Edition"

Edited by Emmeline II - 6/17/12 at 8:59am

[fizgig]

We are only a few months ahead of you but we were also offered a special day class 4x/week for our DS when he turned 3. 

Two things:

1) You MUST visit the specific program they want to put your DS in for you to be able to tell if it is a good fit.  Every program is different and, after looking at about 100 preschool programs, I am very convinced that the head teacher has a lot to do with how a class is run.  Look at the space, watch how the teachers interact with the kids, watch how the kids interact with each other, ask questions about how they handle things (discipline, etc).  Then trust your gut. 

2) Just because a Dr or a school specialist says they know what is absolutely best for your child doesn't mean you have to agree.  If you concern is just that you don't know about being away from your child for 5x a week but you do believe it would be best for your DS then you have to do what is best for him of course.  My question was if an intensive program really was the right thing for our DS.  There is a general feeling among early childhood education specialists right now that intensive intervention is always best but a lot of the research out there doesn't support that. 

Which is why I think it heavily depends on your specific child's needs AND the program they are going into. 

For our DS, I concluded that I didn't think it really was the best thing after doing a LOT of research and visiting the program they offered.  It was in a dingy, dark room.  The teacher was not very attentive and the entire time I was there no one tried to help the students communicate beyond scolding them for not complying with a command.  I later went to another special day class and it was like night and day.  The teacher and aids were engaged and cheerful, the space was clean and open, the students were smiling and interacting. 

This is such a hard thing to navigate.  I hope it all comes together for you and your DS!