Rethinking Em's Inclusion

[Jackie]

I had some thoughts late lastnight and wrote the following...thought I would share.

RETHINKING INCLUSION

I have always advocated for full inclusion…most of Emily’s life. And, for the most part I think this has been a good move.

However, recently Katie went on for what seemed like an hour about HOW MUCH Emily loves her ARTs program. She said Emily is always excited when Wednesday (she goes Wed-Sat) draws near. She gets more animated, smiles more, gets excited. And Katie says when SHE takes her on Saturdays she is positively giddy as they get closer to the building.

Katie said it warms her heart to walk in and see everyone there so happy to see Emily come in and her response to all of them.

We are both thinking that this is the first time in Emily’s life that she has had a well defined structured large group of friends. Sure she has had many friends through Special Olympics and has had the occasional typical friend in HS and now adult friends through Katie and Tony. But this is a group of people in her life who are more on her level, that she sees often and on a regular basis, totally accepting, have a love of art, and who see her as belonging in their circle totally.

Since Em was not in special education in terms of a separate classroom she never had the chance to really bond with a group the way many kids with disabilities do. She was always sort of the “cheese standing alone”. Don’t get me wrong, I think she learned many valuable skills from those times…skills that help her now in typical settings. But she is now experiencing what it is like to feel like you ‘belong’. I think most of us have some sort of situation like that in our lives be it a club, or Sunday school class, card group etc.

Trying not to look back because that really doesn’t help, does it…I can’t help but wonder if her life might have been different had I insisted on more sped for her. Would she have had more friends and maybe had more fun. I just don’t know. Instead, as I have said, she was just another student in a huge school and seemingly pretty happy. Was I just following some idealistic dream of trying to prove she was more 'normal'? Guess these are things I will never really know.

I am just pleased that her life is so full and happy NOW.

But I think it is a factor that we should all think about when planning IEPs and considering placements.

Jackie

[Chris]

Jackie,

When I was pregnant with Sarah, I was sure she would be a Ds superstar. When she was in early intervention, I was positive that I would push for full inclusion. As it turns out, she is probably very average for a child with Ds. She is exceptional in a couple of areas but extremely delayed in others.

Sarah was barely walking when she started preschool so I opted for a sped class in our local elementary school. It was obvious that this class wasn't the right fit for her when the teacher was handing out certificates for many of her students who were counting to 100. Sarah couldn't even count to one. The next year I put her in a Moderate CI class at a self-contained sped building. Did I ever feel like a loser!

She is still in that school and I constantly second guess my decision but I can say that she LOVES school. She talks about her friends all the time and gets so excited every time she sees them. When one student has to go home, the whole class wants to hug them goodbye. These kids really have an affection for each other.

At our local ARC, there are three young men (early 30's) with Ds who always were in the same class. It is so heartwarming to see the three of them together. They light up when they see each other. Those boys are the reason I still have Sarah at that school. I have heard that adults with Ds often deal with depression. I don't want Sarah to end up lonely and depressed.

Anyway, we do what we believe is best for our child at the time. Every child is different and while some may thrive being fully included, others may just be left behind. I have spend many sleepless nights wondering if I am doing what is best for Sarah.

Chris

[Jessie]

Jackie,

Thank you for sharing that. In some weird way, it makes me feel proud that a mother of a child like Emily could even have a second thought that a more special ed environment may have had its benefits. You might find it surprising that there are lots of parents out here that are in some ways made to feel like we are doing a disservice to our child by not having them in an inclusive setting. I personally have no doubts that Jason is in the correct setting for him, but there are moments that I feel like I have to explain or validate our decision to other people.

With that being said, you shouldn't beat yourself up or look back. You and Ed have raised a wonderful person that you have every right to be proud of.

You had said before that you discovered your talent and love of art later in life. Look at Emily's current situation the same way. She just happened to have found something that fits her perfectly - and she's only in her mid-20's!


Jessie

[Chris too]

Lots of great things to consider here. It is such a privilege to us parents who come behind to be able to sit at the feet, so to speak, of those who've gone before. Inclusion is a tough issue. I have wanted for Stevie to make friends of other kids with a similar level of disability, but maybe I shouldn't distinguish that way. In any case, the options for interaction with other kids with disabilities seem to be limited here and now. I am encouraged that solid relationships can be made, for all of us, at a later age - they needn't begin at 3 - silly me for forgetting that lesson. All of my best friends, except for my husband, have been made after turning 30 - if it's so for me, I needn't rush.

OTOH, why waste time? I will try to work harder to get Stevie into more activities where she will have opportunities to make friends of peers with disabilities.

[CC]

Just wanted to add that Christopher when he was born 16 years ago, I will never forget my first Mom contact was going on and on about full inclusion in school. I was like whatever, Chris was just born and what Colin and I knew then and continue to think is what works best for our boy is what matters, full inclusion in school, special ed program...

Chris started out in our home public school and was very much included and was just not right for our boy. At 9 I think it was we moved him, at our choice, to a private school just for kids with exceptional needs.

Honestly I was questioned by many, WHY would we do that? We did it for Chris, thats why.

I have always been a believer that ones can be fully included not just in school, KWIM

Chris has great PALS and I hope they continue even when he is out of school

K, don't bash me BUT honestly I have never met and Honestly I have met many with DS over the years and never have I found their long time buddies are form the "typical" population.

Inclusion in school has it benefits, when done right, but its not the end all in my mind.

As always it comes down to the "I"

Chris skis, bowls, ice skates, shoot hoops and lots of other things with kids that Colin and I pray will be life long pals with Chris :-D

Jackie I appreciate your honest thread

CC ~

[char]

Jackie, I so appreciate your experience and willingness to share it. I think Emily is the absolute MOSTEST! She does so many things well that maybe she could not do today had she not been mainstreamed.

I know she flies by herself, and you've told us how she handles things at airports. I was totally baffled by the DFW tram thingy until an American Airlines employee took me by the hand and taught me! I used to work for Frontier Airlines so how frightening is that?

I think we do what we think is best for our child at the time. We cannot predict the future, so we have to use current information and do our best. I think Emily is so cool because she has her art class and her friends there and she has her other friends as well.

I just hope Abby can have some of everything life has to offer. I don't know if she'll have a talent like art but maybe she can work with animals or can learn to sew or whatever she ends up loving! I just want her life to be full of the things she loves to do.

Jackie, you just keep me smiling because you have been where we are going.

Char

[Emilysmom]

Jackie,
I know we've talked about this on several occasions, and I am seeing similar things with my Emily. I'm not really sure that, if we could do it over again, that I'd change things............Emily did well with inclusion throughout elementary school and middle school. And I think she has learned a lot over the years from some of the typically-developing peers, and has had some great experiences.

However, since she started high school, I realized that there was simply no way she could keep up with her peers in typical classes for academic subjects. So, since her first year in high school, she has only left the special ed environment for "elective" classes like dance, art, personal management, etc. And she has grown SO much in high school!!! Was that due to her simply growing older and maturing? Or was it due to being with a group of students whose abilities were more like hers for the biggest part of her day? I'm guessing it's a combination of both, and it doesn't really matter to me because it's working!! She has always been involved with other kids with special needs at sporting events, the "Rising Above" church events, etc and she loves those friends. I now notice her talking about being more eager to see them than anyone at school or church, where she is included with typical peers.


My most recent post about Emily's success with inclusion was not intended in any way to imply that she had been fully included at high school................it came from my pride that she had been so completely accepted by the instructor and other students in her dance class and that she had been allowed to shine in an area (dance) that she has loved for years. She worked so hard to do her very best in that performance, and it thrilled me beyond words. It was an example of one way that inclusion can work.

As someone else has posted, each child with Ds is different and their experiences are going to be different. When Emily was 3, I was firmly encouraged (from therapists, early intervention folks, etc) to push hard for full inclusion for her.............like it was the very best thing for her. And so we pushed for it at the time, because we all want to do what we think is best with the information we have at the time.

As always, thanks for sharing Emily's experiences with us. I've learned so much from her over the years!!!!

Susan

[Jackie]

Thank you all so much for your comments. I consider all of you my friends so your opinion matters a lot to me.

Of course I probably know Susan best...we go way back and have had some nice adventures together. It is in looking at YOUR kids and seeing them thrive...in both sped and inclusive environments that has made me think about all this. Susan's Emily is a good example of all that. I have listened with great interest to all Susan has shared with me about her HS experience.

You all have to realize that when Em was born...PL 94142 was pretty new. When we moved to Amarillo shortly after Em turned 2 all kids here with mental retardation went to a school called North Heights. This was the elementary school for minorities in the days before integration. At the time we moved here this had become a very unsavory part of town as well...weeds...trash...etc.

I was more or less told that this is where Emily would be attending school and I was horrified. I always thought she would just go to Sleepy Hollow Elementary along with Marnie and David. Turns out the local school district was out of compliance and when I inquired on the state level I was told that they were handling each city on a case by case basis. So...being the new president of the ARC and totally ignorant of about every issue, it fell to me to end this situation.

I had the help of all sorts of Texas and national gurus...advocates of the fiercest kind to help me tackle this. It was nerve wracking to say the least and remember Em was not even in early childhood preschool yet! In those early days the push was for total 'normalacy'...trying to fit our square pegs into round holes. Not much about preparing the world to accept people as they are. So that is where my mindset began. I am the kind of person who is most influenced by what happens first in my life and through all sorts of rah rah meetings and wonderful people I was led to believe that Em could do anything she and we set our minds to. And you know...to a certain extent this was true. Em was a trouper and so was the rest of our family...bearing with me through all these battles. But it was hard...it was very hard on me. I had to develop this armor of constant smiles and the pretense around others that everything with Em was just like with my other kids. In many ways it was...but every day I was aware that the walls of the castle could crumble on us. I was constantly on guard for rejection which oddly never happened.

I must admit that many I met with kids who had disabilitires chose another path of segregation within the public schools and sometimes I envied them because there was no pretense in their lives. Their kids got on the yellow bus in the AM and rode it home in the afternoon and they seemed just as well adjusted as Emily and often seemed to have more friends. But my 'hand holders' told me this was NOT the way I wanted to go...sigh. It wasn't as bad as I make it sound...LOL...and I had many many proud moments with Em along the way.

What was really hard for ME was my sense of not belonging the way I had with my other kids. In elementary school it was ok...there was school sports and sideline chatting...Bluebirds and Campfire to make me feel a part of everything. But once we left that behind I didn't have the fun of phone chats with moms of other girls...hearing about who was dating who...who stole the car..etc. Things I enjoyed with my other kids. I had no group identity at all. The students in sped had moms who knew each other from that and I wasnt a part of them either.

What I think now is that 'back then' we tried too hard to make our kids 'seem' as if they were non disabiled instead of allowing them to just be themselves and teaching others the art of acceptance. This does not mean I don't still advocate for things like APPROPRIATNESS and anything that prepares our kids to take their place in a typical society. But after watching some of my friends with adults who have disabilities shove those kids into situations that were not designed for their disabilities and fail...I have learned to redefine some of MY goals for Emily. I have also tried (sometimes with success and sometimes without) to talk to some of these advocacy gurus...most of whom do NOT have a disabled child...about all of this. I think they need to listen more to those of us who have walked the walk.

But you know...I do wonder if I had not been PUSHED so HARD if I would have exposed Emily to all the things I did and if I would have ever tried to let go and let HER try her wings.

I have told you that Emily is a pretty average person with DS and she is. My list of things I wish she COULD do or do better is still a mile long. However, I am so happy she is who she is...and so happy we have figured out something for her future. There are still miles to go...one being getting her out of Katie's house and into some sort of semi independent living situationn before long.

It's so nice to know that I can share this with all of you here because I still need a hand to hold on to.

Jackie sorry this is sooooo long

[Chris too]

Don't be sorry - it wasn't too long - it's wonderful to read your thoughts on this important issue. Thank you so much for continuing to share your heart with us

[char]

Jackie, your posts are never too long! You'll never know how much I cling to what you say. I'm so far from Abby, and I only get to see her a couple of times a year. Her grandfather usually flies her family to Phoenix once a year so they do come down to Tucson and spend time with me. I then get back to their home once a year. I talk to her dad many times a week, and now talk to Abby herself!

However, I just feel that I can never have too much information on Ds and what folks with Ds experience. Most of all, it helps to know what parents experience.

[sd112170]

Hugs Jackie!! With the big smile on her photo, seems like you did the best for her. Now she can settle down, feeling and being confident in herself. That is obvious with her beautiful art work. Be proud of yourself and her. She seems very happy!!

Stacy

[Googsmom aka Jennifer]

Wow we have some great parents here I thought when Brook was born that she will totally go to reg ed school. I still think she might but we arn't there yet. Brook makes her own way in all she does so I have to be patient and see where she leads herself.

Emily is awesome. She is such a insparation. You have a wonderful daughter Jackie who is who she is b/c of all the hard work you went through. {{{{HUGS}}}}

Sence i've been working for IEP partners I have been swamped with parents of kids with all kinds of disabilities. I now see more of whats out there. I took on 3 counties and all the schools in them. Just last week I was at a little town who just started full inclusion last year. They have a ways to go but what they have so far I was pleased with. They're really trying. I almost want Mary to go there or show her school how blended classes can work.

Thank you all for sharing what you'all have done. It really helps us newbee's so very much. I don't know what or where Brook will go to school yet. I do know her preschool is rockin' it and Brook is learning so very much. Just last week she climbed 3 stairs while only holding one of the teachers hands .

Thank you all for sharing, It means alot to me

[Jodi]

Oh Man Jackie, do you mean to tell me even after high school you will look back and question still?! You know, I think doing that shows just how much you love Em and that you, all along, just try to do what is right at the time. Time changes things... we look at things differently after the years have past. I wish I could perfectly parent Ryan, but I know that at the time, I do the best I can. If circumstances change the game, then I try to adjust. This JR high experience is a perfect example.

I was pushed when Ry was an infant to make sure he was included. Academically, Ryan can not keep up at grade level. As for the social area, we still have issues with that even in a non-inclusive setting. Ry gravitates towards adults because he gets his way with them. I mentioned before about how happy I am with his new teacher - here is an example of why... she sent me an email stating that the games I sent were working good to have Ry interact with other students, but suggested we make that an actual IEP goal next year, and then proceeded to provide some ideas - just wonderful!

I wish I had done plenty differently already... I wish I had questioned Ry's doctor and discovered his sleep apnea sooner so that his brain was not oxygen-deprived the first few years; I wish I had not put Ry in Kinder inclusion because he would have not been "spoiled" in a SDC class; I wish I had not listened to the SLP when she said Ry's speech could not improve... I try to look back at those crappy points and realize I did the best I could with the knowledge I had - and it was always with Ry's best interest at heart.

I look at you and where Em is and I think "holy cow, how'd she do it?!" When I read your story about how you got involved so early, you made such a difference not just for your daughter, but for so many other children. The second-guessing, I think, is a normal parent thing to do I guess, and it doesn't look like it ever stops

Jodi

[MB]

We have changed course in our town. We now talk about the "working placement." We will advocate for any parent who wants the least restrictive environment for their child, but we will no longer hold inclusion up as the holy grail.

The working placement for kindergarten/first grade would look like this.

Is the child.....

participating in getting ready for school such as dressing, finding his backpack?
willingly getting on the bus or into the car?
producing some work?
making friends?
showing progress in any area including speech, social, academic, life skills?
liking his teacher?
being invited to outings or play dates?
liked by the teacher?
anxious to go back to school after a holiday?

You will notice that the child is in the driver's seat. It is looking at the child and evalulating whether the placement is working for the child rather than the adults involved. If the team is answering no to most of these questions, then the poor kid is not in a working placement.

The team has two choices. Fix the placement with proper supports and accommodations or change the placement. Amazingly, I have been in IEP meetings where a kid absolutely needed to go to a self-contained environment (he was miserable in full inclusion) and an IEP where a kid absolutely had to be integrated into the regular classroom (he was miserable being isolated in the resource room).

When you, as an IEP team, come up with the criteria for the working placement (the list above) before the child is placed, then the team can evaluate the placement in a more objective fashion. It takes a lot of the stress out of the IEP meeting and you really do become more of a team focused on the well being of the child.

This method can work for extracurricular activities, employment, summer camp etc...

mb

[Jackie]

MB...this sounds like a very good method. I have always believed the student should be the focus ...but in traditional schools...just oh so hard to get away from established protocol in terms of IEPs. I hope others will try this and report on it.

Jackie