Parents of kids with Down syndrome-please help me understand

[KPeveler]

if a "normal" (i know, i hate that word too) girl wanted to sing in the church choir (which as i understand it is open to all) and was terrible, you would put up with it. it would be damaging to her self-esteem to kick her out of a volunteer choir cause she cant sing. Its like telling her God doesnt want to hear her cause she is bad (its church for goodness sake!).

so why is it ok to tell a girl with down syndrome that she cant sing, and kick her out?

 

[addicted_to_WDW]

if a "normal" (i know, i hate that word too) girl wanted to sing in the church choir (which as i understand it is open to all) and was terrible, you would put up with it.

I bet the director wouldn't exactly put up with it. The girl would be worked with and almost definitely told to sing more quietly as to blend with the rest of the choir.

 

[Scutapipig]

Teen girls are so self conscious...I'd never want to put my daughter with Down syndrome in a postion that other teen girls would be uncomfortable in.

Ok. This pretty much sums up how you really feel. It's not really about Callie, is it? It really is about appearances and how "others" would be uncomfortable, i.e. you.

 

[phillybeth]

My 60 YO uncle with DS still believes in Santa Claus. And we, his family, encourage him. Some might think this is terrible, a 60 YO man believing that a fat man in a red suit gives him presents.
But those people never saw his face light up on Christmas morning. Remember when your kids were young, that completely innocent joy in gifts given with no obligation? He still has that, and he is 60. If anyone tried to tell him the truth- tried to take that joy away from him- not only would it break his heart it would destroy the family as well.

This mother sees her daughter's joy in raising her voice to God. No shame, no embarrassment, no thoughts of "am I good enough" or "people might laugh at me". How dare you even think about taking that away.

 

[missypie]

Ok. This pretty much sums up how you really feel. It's not really about Callie, is it? It really is about appearances and how "others" would be uncomfortable, i.e. you.

I must not have expressed my thoughts clearly. It's the idea that if a teen without Down syndrome would not be comfortable in the situation, I would not make a teen with Down syndrome be in that situation.

After my grandma had a stroke, she ended up in a nursing home for a brief period of time. We went to visit her at Christmas time and the staff had put a Christmas bow-like comes on a package-in her hair! We took it out out of respect for her dignity-we knew that if she hadn't had a stroke she CERTAINLY wouldn't have been going around with a Christmas bow in her hair!

 

[missypie]

This mother sees her daughter's joy in raising her voice to God. No shame, no embarrassment, no thoughts of "am I good enough" or "people might laugh at me".

I think you've answered my intial query better than anyone here. Thank you.

(By the way, NO ONE has even hinted at removing Callie from the choir. The church is marvelous to Callie. We had a Christmas Eve service led by the Youth Choir. Our Christmas Eve services tend to be of the "quiet and contemplative" variety. Callie and her dad lit the advent candles, then sat with the ministers for most of the service, then she joined the group for the last few songs. It worked out very nicely.)

 

[Cheshire Figment]

I must not have expressed my thoughts clearly. It's the idea that if a teen without Down syndrome would not be comfortable in the situation, I would not make a teen with Down syndrome be in that situation.

As you stated earlier, you are unwilling to talk to "Callie's" mother. What makes you think that you know what is going on in Callie's mind? Is it possible that her mother did not think it was a good idea, but she wanted to do it.

I think you've answered my intial query better than anyone here. Thank you.

I think this last comment is a good place for you to leave this.

 

[MarieS]

i am also a mom of a ds7 with down syndrome. i agree with the previous posts that while she may sing off key, she is also setting a great example to be courageous and do what you enjoy no matter your ability.

i was in a slightly similar situation with my son's school a few years ago. about a week before his kindergarten christmas concert, they told me he may not be able to be in it (because he wasn't participating 100% during rehearsals). i was completely shocked and appalled!! it was a kindergarten concert, singing jingle bells, etc.!!! they were afraid that he may bring attention to himself or not act appropriate. to make a long story short, he was in the concert and stood there better than some of the other kids (who are not disabled) who were picking their noses or crying!! he was given the chance to participate and he was successful. as a parent of a disabled child, that is all i really ask is that he be given the chance. do i wish sometimes that he could just "blend in", heck yes. but that is not a reality and neither is keeping him isolated so "attention" won't be brought to his disabilty

I had almost the exact same thing happen when my son was in kindergarten. DS has severe CP and uses a wheelchair. The music teacher said he would "ruin" the program. Thankfully his special ed teacher intervened and the principal agreed. I was so nervous that night! When the curtains opened there was my son looking handsome and waiting nicely. Saw a lot of other 5 and 6 year olds waving to to the audience and hopping up and down--but it was a kindergarten concert after all! LOL

 

[barkley]

i am torn about this-i understand the need to be compassionate and understanding of 'callie', but i also believe the other members of a volunteer choir need equal compassion and understanding. by that i mean-is any accommodation callie requires creating an undue or unreasonable hardship/detriment of enjoyment on the rest of the volunteer choir?

the reason i ask is because of my experiences. i have a son with pronounced adhd who would love to do community theatre-but i am aware that his current level of attentiveness, as well as his reaction to exciting situations can result in disturbing others (noise, not as careful as he would need to be re blocking, choreography)-so i have never to this point allowed him to participate. i do community theatre-and a couple of years ago i did a show with a group that does one production per year wherein they allow all children who volunteer to be part of the production (no audtion-just show up the first night). there was a woman who brought her ds who is about the same age as my son and appeared (to me) to have adhd to a similar degree. the child was included in the production and while every effort was made to accommodate his needs it was taxing have to repeat segments of rehearsals numerous times because he could not pay attention. as the production dates approached it was apparant that the child (as my child would have been) was 'keyed up' with excitement such that he was singing off key to the extent it threw the other children off, and not paying attention to the minimal choreography he had been blocked into such that he would cause other children to falter, lose their place and in some cases stumble and fall.

the group to their credit worked intensly with him-but the circumstances of his disability were such that while he/his family may have taken tremendous joy in his on stage experience-the overall production suffered terribly, and for some of us who were enlisted (not volunteered-but assigned out of necessity) to 'take care of him' on stage and behind the scences-it became an incredibly stressful situation. yes it was a volunteer group, yes if people did'nt want to participate they could leave-but when a 'fun' activity is drasticly altered to become unpleasurable for 60 people to facilitate the enjoyment of 1-it seems not a reasonable accommodation.

i'm not saying this is the situation with 'callie'-i can't know what it's like, but i know for me-when i weigh the possibility of my ds participating in some activies, i don't just consider what i would want out of the experience for him-i consider what i would want for any child-and if i know my child's participation will greatly hamper that experience for others, i find some other venue that will work for him.

 

[WildGrits]

I think there is a difference between community theater which is for entertaiment, and singing in a choir during Church services.

 

[SueM in MN]

I think there is a difference between community theater which is for entertaiment, and singing in a choir during Church services.

I would agree. Church is a different situation because the main purpose of a church group is praise, not entertainment.
The ADA doesn't require require accomidation if doing so would substantially alter the situation for other people. It appears in the theater situation, it seems it did alter the situation (as in needing more rehearsals, repeating it more times).
We don't know much about the choir situation except that 'Callie' sings off-key.

 

[barkley]

i agree church is different than community theatre-i was simply telling of my situation/experience/opinion. i think the particular group i worked with went well and with regularity goes above and beyond meeting ada standards (and has done so for decades before ada was ever a consideration) with in the majority of circumstances no significant negative alteration of the experience for others. this is not the situation however with the majority of church choirs and music groups in our area however-they are largly performing at a much more demanding level-and since they are exempt from ada laws they make no effort in accommodations nor do most even provide an opportunity for participation if an individual is not entirely capable to doing the material at the standard pace of the group, and at the performance level of the group (not saying i agree, but even with the volunteer church youth choirs in these parts-by around 5th grade the expectation is that you can be handed a peice of music, sight read it-and remain on pitch). in all honesty 'music ministries' seem far more focused on music than ministry.

 

[Hannathy]

Thank You Barkley I think you explained this situation very well! Much Better than I have been able to do.

I would love to know what will happen when "Callie" ages out of the youth choir, Will she be welcomed with open arms to the adult choir where her Mom the professional singer sings? Will they accept with charm and grace as the teens are supposed to do her monopolizing the songs? Singing loud and off key and out of time for years? No aging out of the Adult choir. I know in my church the adult choir takes it seriously, paid musical director, serious practices and while there are no try outs if you can't sing you will nicely be put in the back and coached to not sing out, blend in, etc.

 

[Andy B]

I looked back at the original post, 'Callie' was singing in the age choir before and the Director is fine with her, I think that indicates that this Church is acting in a Christian way and accepts her participation as many think they should. Her mother obviously wants her daughter to enjoy the participation in choir singing and currently it does not seem at odds with the feelings of the church.

I do feel that a Church is not the place for elitist activities but inclusive ones, perhaps I am out of touch. I seem to recall Jesus welcomed the parts of society that at the time were rejected by the established temples, it would be a shame if this has reverted back.

 

[barkley]

my sincere hope is that it's callie's desire to be in the choir (not just because her mom wants her to be in it), and the choir director has the skill to reccognize if the level of music they are performing is not putting undue stress on her, and has the ability to discuss with the mom/powers that be any concerns they might have if they see the situation becoming too much for callie (or others in the choir).

church dynamics can get very 'political', and it's not unusual to have paid or volunteer youth/music leaders not do what they truly believe is best for an individual or the group by virtue of alienating a parent/family member from the activities they participate in or support through volunteer efforts. i've also known 'leaders' who were badly burned by pursueing someone's best interests by virtue of the parent/grandparent holding a place on a church board or as an elder-entire activities disolved

i wonder-it's been said that this is a volunteer choir. does that mean that every person, despite being able to read music or the lyrics is accepted into the group? reason i ask is while there are lots of volunteer church choirs in our area, they do limit volunteers to those that meet the minimum standards-and to balance out the choir only so many of each vocal type (so you can be a phenominal first soprano but if they only have slots for altos you're out of luck). theres been times when individual churches have altered their music ministries because they have a massive amount of women but few men-so they convert to women's choirs, and they may take the men that are interested (if the music minister is willing) and do a smaller group with them and some women to fill it out-but they have to do what music their faith limits them to-and in some cases theres a clear distinction between full choral vs woman's choral music. if the group the op's daughter is in does have a minimum standard of ability for participation (i read this as callie not being able to read music/has to learn by ear, not being able to read the lyrics at rehearsals-has to learn them with assistance by rote outside the rehearsals), then so long as an accommodation is made for any child to waive that criteria (special needs or not) exists-i see no problem with 'callie' participating. if however, other non special needs children are excluded by virtue of not meeting the minimum standards, and are not provided the same opportunity to learn the material in an alternate way- 'callie' is not being accommodated-she is receiving preferental treatment.

 

[fan_of_small_world]

barkley, I think you have made several very well-thought-out and well-wrtien posts. I have a DS with mild ADHD. Like yours, ours has sometimes expressed a desire to participate in an activity that DH and I felt was not appropriate at the time due to his inability to focus and his implusiveness. He is extremely sinsitive and we did not want him to be in a position of getting teased, and we did not feel it was appropriate to disrupt others. We striongly believe in presenting challenging activities and that learning comes through new eperiences. However, we also recognize that with each child you must know and respect certian limits. We are very blessed that with time and some wonderful resources he has made great progress, and we are ready to let him try some of these activities.

As for church activities, I can't speak for Callie's mom's decision to allow her to sing in the choir. I know thayt my DS might feel embarassed if he stood out, but I have absolutely no way of knowing how this child feels about her participation in singing her praises. And, if this is an "open to all" choir, then she should be welcome to sing with them. Many churches do have a variety of choirs, some open to all, some requiring auditions. As long as the church is being consistant in their actions, then there shouldn't be an issue.

 

[roadtripper]

I had almost the exact same thing happen when my son was in kindergarten. DS has severe CP and uses a wheelchair. The music teacher said he would "ruin" the program. Thankfully his special ed teacher intervened and the principal agreed. I was so nervous that night! When the curtains opened there was my son looking handsome and waiting nicely.

I am ready to cry reading this--how sad for you, I'm so sorry they treated you that way. My DS, 10 also has severe CP and uses a wheelchair. In his school Christmas concert this year, as the class came to the stage, the music teacher announced: One little boy in the class seems to know all the words and music better than anyone else, so he will hold the microphone. It was my DS, (and he did!) Music is (one of) his special gifts.

In our church choir a few years ago, there was one boy who sang at the top of his lungs-- totally off key. We all thought it was a riot, because he put so much into it, and he made everyone in the congregation smile. He had leukemia, and we lost him a few years ago. You can bet the whole parish would rather have his horrible singing than the absence of it.

 

[missypie]

I've refrained from posting further on this thread at the suggestion of the moderators, but I will add one thing: We had dinner Saturday night with the youth choir director and the subject of Callie came up. She asked us to pray about the situation all the time. She knows that above all, this is church, so Callie should sing. But she also knows that she has been charged with building a strong youth choir program, and she can see this having a negative effect on recruiting new kids. She says she thinks about it every day and goes to bed with a stomache ache about it almost every night. Maybe God will send a very special group of kids to the choir.

 

[terri01p]

My goodness !

 

[mom-2-3]

Our church has a "tiered" choir if you will, anybody who wants (no try outs, just rehearsals), praise team (tryouts), and solo/specials (the really good singers). So everyone has an opportunity to participate. Maybe something along this line would work. Granted I was talking about the adults, but it could be modified for the students as well. But I am concerned about the wondering as to how this would affect attracting other students, I'd think it would help in that some might be more willing to try, knowing how accepting the group is. I have a son 5 w/ Ds with speach that is just emerging and without getting into stereotyping him or others, there does seem to be a strong connection with people w/Ds and music/dancing. He can't sing the words, but he can follow the melody of many songs with an "aahhh" (sorry don't now how to describe it better). Also, something is that most people with Ds don't have modest bone in their body! and have a very "pure at heart" approach to life. They do what they want and doing it because they enjoy it, not because other people think it is cool or not. I really don't think Callie would be singing if she didn't enjoy it and want to.