Last Friday, I attended Alex's IEP meeting. Frustrated by the lack of services the school was willing to provide for the coming year, I finally spoke up..... emotional but nice. Within minutes of expressing my concerns, OT was written into the IEP 25 minutes a week. It was also explained in the notes that Alex would need assistance getting around school-- like opening doors, carrying his tray in the cafeteria, getting on the bus, etc. He would also get speech therapy twice a week.
It all sounded good except for one other thing.
I asked that the students at the school be reminded that it is not nice to stare, laugh, or make rude comments at children just because they look different. Not only do I think this is important for Alex and Dennis but I think it is important that the kids be reminded to treat others as they want to be treated. Don't want to debate this, but I do think that Dennis and Alex should be able to attend school everyday without being stared at or made fun of.
The teachers agreed that this would be a good thing to address and asked me if I would right up something that each of the teachers could share with the students. Wow! Me? Write up something? What an opportunity. So what should I write? I would love all of your help. Please, please, please. I don't want to miss anything. If Dennis and Alex were your sons and you had the opportunity to share with the school about disabilities and acceptance, and how everyone should treat each other with respect and decency, what would you say?
25 inspiring thoughts:
Hi,
I don't think I have commented before, but I've been reading your blog for a while.
While it really sounds nice that they asked you to write up something, for me it sounds more like the teachers have no idea themselves and wanted to pass on the job. Which would be a shame...
You might want to steal some ideas from MDA's publication "Everbody's Different, Nobody's Perfect." You can read it online here: http://www.mda.org/publications/nobody/
I think the biggest thing is explaining how Alex (and Dennis) are just kids like the rest of the kids in the class and really have much more in common than they do different :)
Best of luck and I would love if you would post whatever you come up with when you are done.
I think it's great that they're giving you the chance to talk to the students. Give the students a chance to ask you questions. Kids tend to be less cruel when they get their questions answered. Give them a chance to feel like they're important to the boys.... 'this is why Dennis needs your help', or 'Alex feels more normal if you could help him with the doors', etc.
Well here is my two cents:
Write about the things that make Alex and Dennis just like them! Yep, write about their likes, add some comical dislikes, and really get the students to identify with the two. Then sock it to them by showing a picture of Alex and Dennis's "disabilities" and state they are just like them with a few extra features that make them different.
It seems to me that kids are more accepting when they can identify with the person. You might even go as far as to host a little Back to School party at the house for some of their peers so that they can really get to know one another!
Good luck!
Hey Christine,
Wow what an opportunity! There are so many ways and things you could do or say to help other children understand. I have a couple ideas and suggestions but the one I kept comming back to is the books written by Max Lucado for Children. "I am special, Best of all, and, If only I had a green nose" They help kids to see that everyone is made different on purpose and thats what makes them special. (They are written for kids aged 4 and up, They also come in short DVD stories) The other thing I thought I would do if Dennis and Alex were my boys is to have a Q: and A: time with the kids in the class and then get a big poster board and write out things that are different about all the kids. IE. Jane has long hair and glasses and likes the color blue and John is left handed, is allergic to strawberries and has a pet turtle. etc. Once the kids see that they are all different but also very much the same I think it would help break the ice with acceptance. Dennis and Alex are just like any other boys but are different in some ways too. When you do finally write something or decide what to say will you post it? I would love to hear what you come up with. :)
I know it will be great!
Catherine
Sorry, I whould have added this on my last comment...
You could also write out a short note to send home about Dennis and Alex. That way when their classmates go home any questions directed to their parents can be answered with honest answers that aren't "I don't know" :) Also it would allow parents to get to know Alex and Dennis a little more themselves. If the parents are understanding then the kids will learn from them also. totally understand if you had other ideas. thats just what I thought. :)
Good Luck!
I wanted to bring my baby (who has Down syndrome) to the local schools so I could do some social education for the other children. I wanted to show them that children who might seem so different start out just as cute (sometimes cuter) as they did.
I couldn't do it because of legalities, but when my baby goes to school, I plan to bring LOTS of pictures in to show and do some social education then.
Books are a great help for kids to understand. Go to your local library and see if you can find some books about disablities or differences. I'm not sure what's out there as I only know of some Down syndrome specific books, but there must be some out there that explain how everyone is made differently and that there is nothing wrong with it.
When I was little, one of my classmates had a baby sister who had cancer. The baby had a shunt in her head, among other things. My classmate's mother brought the baby to class and told us all about her and showed us her tubes. If Dennis and Alex were my children, I would take a similar approach. I would plan times to visit the classroom and tell the students about amniotic banding and about spina bifida. I agree that having a question and answer time would be appropriate. It might even be a good idea to bring the boys with you so that the other students can meet them.
The reason that children are uncomfortable around those who are different then they are is because they do not understand. When the children are given an opportunity to ask questions and to get to know your boys, most kids will accept them for being the sweet wonderful boys that God created them to be.
Good for you for speaking up as their mom about something so important. I think it's a lesson that should be taught in school for ALL students.
Because you are a religious person, I thought of this. God made us all the same on the inside even though we all are different on the outside. Since it is a public school, you might not be allowed to say that though.
I think one of the issues is that people are naturally curious, kids even more so. The boys are young enough that you can speak to the older kids in the school without the boys present. I agree that photos, a talk about who they are, what they are like as people, explain amniotic banding, spina bifida, what they have each gone through and have yet planned in terms of treatment, etc may help. The photos give the children a chance to look at the kids, Dennis especially, which may make them less apt to stare or sneak sideways glances. With due respect, I would focus less on the differences like hair color and glasses. Kids know that Dennis's face does not fall into that category. Tell the kids how they can help Alex or play with Dennis. Get some older kids on side so they will model to younger ones. Dennis in particular is always going to have to deal wit people looking at him. Sad but a fact of life. We look at what is different. I saw a woman with a bizarre hat today. I did not stared but I certainly looked more than I did at other people on the street.
With their class, be a little more direct but similar. One tactic for Dennis might be to invite kids to look at him, feel a scar, get it over with and then the kids can get past it. When my son was having a major surgery which would leave him with an external metal frame on his leg for the better part of a year, I made up a book about the process ( a friend helped with illustrations) and we took it to school to read it to the class. That might work as well. Are you aware of the organization "About Face?" It supports people with facial differences. You may find resources there to help Dennis through different life stages and challenges.
Ellen
My Mom taught kindergarten and she got a child with EB - LONG time ago when it was "rare". The Mom did a little "presentation" in the classroom, complete with a picture of her little and talked to the kids about what EB was, etc. I think most kids stare and ask questions because they are just simply curious, they want to know if "it" is contagious, etc. When children with special needs go to an integrated classroom i.e. preschool, then they have peers (typical - I hate this word by the way) who have gotten to know them for who they are as they move through school. This is such a great opportunity for you. The other suggestion I would have is see if you can bring in a pair of crutches or a walker or a wheel chair and let kids see these items, maybe even try them out. You can also do an experiment where kids are blindfolded and see what it might be like to be blind. In other words let them walk in other childrens' shoes and just see how it feels. I could go on and on, but I will stop for now! P.S. I am a special education teacher!
I would leave God out of it--your kids go to public school and you might make some parents upset. I would send something home for the parents to read first and for them to talk to their kids and then you could give your talk. I have asked my son over and over what he thinks of Dennis and he always says "Im scared". I tell him over and over that Dennis is a nice boy and if I cover his prosthetic eye, my son says he looks nice, I think that most of the kids that klds that Dennis goes to school with will be a little scared. I think Alex will have it easier. I don't know what to tell you to say. Good luck
I don't think this is a one-time thing. It is more like an on-going program of sensitivity to others' differences... Ongoing in the same way that anti-bullying efforts are on-going. Not that staring or giggling, or whatever is bullying... I agree with whomeever pointed out that the kids are curious and scared, too.
For all they know THEY will suddenly be struck with whatever "struck" your boys. I expect many of these kids (even older ones) have NO idea.
When I was in 4th grade I moved to a new school where a little girl in 5th or 6th grade had cancer. I just knew that all around her was a huge cloud of fear and anxiety. I don't think my mind even went so far as to put words to the fear she engendered in me. I was not the sort to respond by pointing, laughing, giggling or anything else, but I was terrified.
If someone had attempted to explain cancer; why she looked so strange (in a grown up woman's wig she looked horrifying), what she was feeling, why she was at school if she looked so sick, etc. ect. etc. it would have helped a lot.
But, such explanations are on-going, and in explaining there needs to be a demonstration of HOW to talk about disabilities, and differences and things that scare you about other people. Ongoing....
There are also tons of lesson plans and activities, if you search under "disability awareness".
Sounds like they want you to write up a "statement". That's crazy! It needs to be so much more!
I like Mountain girl ideas.
I had this strange experience once as a child. My mother friend at work had a polio as a child and, as a result, he lost use of his both legs and had to use crutches. I was always fascinated to know how it felt to move around using them. One day I was in my mother office and she and her friend were talking over some medical files sitting at the table, and his crutches were just there leaning against the chair. I took the opportunity, I was sure he would not need them for a couple of minutes at least, looked like they had a very long discussion ahead of them. So, I grabbed the crutches and started to walk around the room. My mother jumped off her chair and slapped me on the face and took the crutches away. I was shocked (I was about 10 and never was slapped on the face) and my mother friend was shocked too - he asked my mother - What did you do that for?
My mother send me out of the room.
I guess, he convinced my mother to bring me back in and explain my behavior. It all ended well and I was excused.
The other experience I had, as a child, was when during summer vacation, my cousin and I were walking by the school for the blind. I think that the school was on our way to the park. We always played blind people - closing our eyes and trying to walk on the sidewalk. I still remember this strange and fascinating feeling - to get a glimpse how other people feel.
That is why I like Mountain Girl idea - give children the opportunity to feel a little bit of how Dennis and Alex have to go about their everyday life. It may take an edge off of their feelings.
Good luck, you have big task in front of you!
Olga
Having been an elementary school teacher and a mom I can tell you that the students will take to heart what the teacher tells them. At this age, the teacher is some kind of know-it-all super-hero. Seriously. I had parents ask me to tell their children to keep their room clean because they wouldn't listen to them.
Anyway, I say this because it's a great opportunity for you to have them speak on your children's behalf. Children this age are very concrete so it's best to tell them exactly how you want them to behave around the children. If you don't want them to stare then have the teacher be very direct about this and tell the children not to stare. Don't make it too complicated or they will not remember or understand what to do.
If the children are young, kindergarten or first grade, they will probably stare anyway. They are not of an age to be able to put themselves in someone else's shoes. Perhaps you can teach Dennis and Alex a few responses which would assure the young child that they are just like any other kids.
And do you know who has even more power than the teachers? The older students in the school. If some of them came in and talked with students you can bet they will listen and take heart because they want to be just like them.
How sad they don't know how to do this themselves and don't already incorporate this in their standards of practice. October is National disabilities awareness month, as well as MLK day focuses on the differences we all have. I would think they have some idea how to do this!
There are lots of children's books and activities the classroom should already be incorporating.
That being said, take every opportunity to make yourself heard! I guess if it's a letter to the parents in the general newsletter I would just write as a parent to another parent, asking that if they have not addressed this at home to try to do so while giving tips on how you talk to your kids about it.
I agree - what a great opportunity!! I don't have time to read thru the other comments, so maybe someone else has already had this thought. Many years ago in a daycare where I was working (quite a diversity of backgrounds with the kids in that class), the teacher had the greatest, sweet lesson that was something like this. She had the kids sitting in a circle and then pointed out how we are all the same .... yet different. They compared arms. Each had two arms (in this class) but there were no two who had exactly the same color, shape, size. So we are different. Yet we are the same, because our arms (hands, fingers) serve us ... for most of us we use them to pick things up, to write and color, etc. This briefly for different body parts, and then at the end rounded it out by pointing out that tho we ALL look a bit different from each other, we ALL need some things the same - for example food, clothes, friends, love. Anyway, it was quite short, kids were involved, and it was soooo sweetly done.
I was working in ecse once, specifically with a little girl with spina bifida, and I remember when she was being integrated into a 'regular' classroom one of the kids asked why is she in a wheelchair. When the teacher said because her legs don't work, she started to cry so loud - she had never heard anyone say her legs don't work. We then gently pointed out that we had always figured that her legs work ... just not for walking. They work for having pretty pants on, for holding her shoes on ... and she needs these when she uses her stander and walker. ......... Just some thoughts!
Here's what we did.
I wrote an eight page booklet (with photos) on my daughter. It was written in the first person, and started with a picture of her just smiling out at the rest of us. It was written in very child friendly language, and gave a very basic explanation of her disability "I have spina bifida. This means my legs don't work. Some people who have spina bifida can walk, but I can't. I don't mind because I have my wheelchairs and I can get around really quickly with them." It had a photo of her looking poorly in hospital and talking about some of the operations she has had, and talked about how people have to be a bit careful of her floppy legs because she can't feel them so doesn't know if they are being hurt. And then there were photos of her having fantastic times doing things other children really enjoy doing - in her case playing in fountains at Epcot, but maybe being on a 'plane or swimming, that sort of thing. I did mention the adoption but without going into her back story - that's for her to tell - and it was more of a reminder to the adults reading it "I am adopted, and I live with my Mummy Tia and my sister. They are my family now. If you need to know anything more please ask my Mummy but not when I am around."
I then left contact details - my mobile phone and email address. And had a brief line about if you need to know anything, or if you are worried, please call my Mummy. But please remember, most of all I am a little girl who enjoys all the things other little girls enjoy doing and does not enjoy being stared at or treated differently.
What the school did was fantastic. They made several copies of the book (I had laminated it for durability), and every single class in the school used it as a part of their disability awareness training - I'm not sure what else they did, but if I'd been in charge of that bit I'd have borrowed some wheelchairs and let them trundle around in them, trying to push themselves up ramps and open doors,just giving them the idea of teh challenges my daughter faces every time she moves.
After they had gone around the rest of the school, the booklets came to the Foundation stage classrooms, which where LF is now. And every child in the two classes (60 in total) took the book home to read through with their parents.
It's been fantastic. Everyone in the school knows her name. And they all include her. The only stares as she goes into school are from visiting children; the others just call her by name and either try to jump on the back of her wheelchair or fight to hold her hand or just carry on with what they were doing before.
I didn't go into graphic detail about all the medical stuff - I did have to think about how far to go with it all. In the end we did not mention incontinence or catheters or anything which only takes place in private. But we did talk about her Gastrostomy feeds, about how she has her drinks in a slightly different way, and how having a shunt at the side of her head means you have to be careful not to hit her on the head with footballs etc. I think we've got the balance about right. And by naming (some of) her medical conditions and disabilities, we've hopefully taken away the fear that it's infectious or caused by a car accident or cancer or any one of the innumerable assumptions people make rather than thinking that a child might just be born with a disability.
Everyone has such good ideas!
Here ate a few more websites
http://www.childreninthepicture.org.uk loads of resources for educating children about differences in others, mostly physical disabilities. They have pictures, e books, book lists, tips for teaching...
http://www.changingfaces.org.uk/Your-Child/Nursery-and-school
changing faces is a charity in the uk which supports people with facial differences. Their website has lots of useful information on how to educate others. I've linked you to the bit about school and pre school.
Best Wishes Claire
Christine -
What an opportunity! My dear friend started and ran a ministry for families affected by disability for many years. She always told me that children were awesome and inclusive when they had been educated on the what's and how's. When she would talk to a Sunday School class about autism, for example, and what can reasonably expected behavior-wise, she said the children would be inclusive and very kind. Good luck in writing your thoughts.
The only thing I can think of is Keep It Simple, remeber these are young ones they will get board (lost) if the explanations are long and drawn out.
Kids are naturally curious so I'd suggest that you satisfy their curiosity by explaining the physical differences of your kids. Then talk about the similarities so the kids can see that they have more in common than not.
When you feel like you know someone personally, you're more compassionate about that persons feelings.
Donna
Our Blog: Double Happiness!
I feel really bad about this, but I'd like to share it just the same.
Once I was looking after some children at an activity day. I thought one of the children had a cut his head or got some orange paint on it, so I mentioned it to him. He said "I HAVE NOT GOT PAINT ON MY HEAD!" and his mum said "It's a birth mark." I was really embarrassed and not quite sure what to do. I had an idea and said "Oh, I've got one too." I hitched up my trouser leg and showed him the birthmark on my leg. The little boy smiled and said "We both have one." and ran off to play.
I don't know what his mum thought about the whole thing, but I hope I was able to rectify a bad situation.
Ask the kids what they think. Address their concerns, even if it might hurt to hear. Ask them how they think Dennis feels, and Alex. How would they feel? How do they think alex and Dennis would like to be treated? Guide them so they think it is their idea to stop staring, etc.
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