DownSyn Forum

[rebith75]

This was surprisingly difficult to find information on, but my wife and I have a 19 mo boy with trisomy 21, for lack of a better description he is not very limited and our docs often say how “mild” he is (walking ~14 months, communicating etc). One of our biggest fears is for him to grow up through school (elementary, middle, high school) without having good friendships, by that I mean not a friend that spends time just to be nice or siblings but like a true best friend. It breaks my heart when I hear about parents paying people to come over and have play dates etc. Anyway, my question is, from your experience do kids with down syndrome develop strong relationships with other kids with down syndrome? We live in the Seattle area, so I am assuming we will be able to be with lots of other down syndrome children, and several on the same “level” thus a higher chance??? Forgive me if this all sounds ignorant or offensive, just don’t believe that the kids being “nice” at school is good enough. This I suppose would influence decisions to have more children and what schools/programs to participate. Thanks in advance!!

[joshuasmom911]

Hi and welcome to the forum. I am glad you came here to express your questions and concerns. I just joined so don't have the experience to answer your question. My son Joshua is 3 and is delayed. He has strong attachments to cousins and his therapist. I understand you are worried about school. We are about to start with the school system and I am experiencing those same concerns. There are many experienced moms on this web site who have a wealth of information to share. One thing we participate in is our local Down Syndrome Assc. We live an hour from Memphis, TN but are able to participate in some of their activities. They have brunch for new parents, zoo days, and conferences that address specific issues. They to have been a wonderful support system and a way to interact with other families. Hope this helps.

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mother to Joshua Eli "gift of God". Joshua is 3 years old with down syndrome.

[TheBradyBunch]

I'm sure like anyone else, he will have friends. Honestly, I don't care if someone wants to be friends with my son just "to be nice". Isn't that how all friendships start? I just hope he feels nothing but love and kindness, even though I know that won't happen, since the world is a cruel place.

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[Kasey]

That was a worry for me as well. Paige is turning 4 and already has a "Best Friend". As in break down crying, misses her, talks about her all the time and points at pictures of her friend telling me who that is! And her friend gets so excited when we come over, they giggle and play and make up games we have no idea - and then fight just the same!
Granted her mom is my best friend - so that worked out But it will be interesting when school starts, Paige is 2 years older. So far all the kids in her preschool class seem to want to play with her - it's hard to tell though, she is quite a bit smaller and with the limited vocab may be the "baby" of the class.
And as much as I want Paige to have a true best friend, someone "just being nice" is better than nothing at all, which is something I am coming to terms with myself...

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Kasey, mom to Paige (4), Leigha (0!)

[lola]

My daughter is still young enought to have her preschool friends without DS. But I am realistic I understund that once she grow up it will be different story. However we had found some new great family friends who have daughters with DS the same age as our, I guess that these 3 girls will form a good friendship in future:) But I think the time will show how everything goes, it is up to her to make the friends, I can just help her a little to have a good company and possibilities to find the friends

[Emdad]

Hello and Welcome!
The first thing I'd say is that it will depend a lot upon your son.
Our kids are people first.
It's hard to give you a reliable answer now, because our kids are all so different "across the spectrum."
Specifically to one of your questions, in my daughter's case, I haven't seen any other Down Syndrome kids in any of her classes.
Now, Emma does not speak, at least not intelligibly more than a few words. In that sense, it's really difficult to know how she feels, particularly about someone else. I can't really tell, when doing things like looking at pictures of other kids on this site with her, if she recognizes any affinity to them. She smiles and points, as she would with any other pictures of good looking kids her age. Not being able to talk means that a 'best friend' kind of relationship would be dependent upon actions, shared activities, etc. . . . which is going to mean a pretty significant effort for both of them. For them, it will be easy. If and when it happens, she'll find a way to communicate it. At school, she's got 'friends' inside and outside her class. She has a personality that wins hearts. She's a party animal. She schmoozes without saying a word. Really.
So that's my story, from my perspective. Based upon what you've written, I think your son is going to be fine. My advice to you is not to limit your thinking about who might be his friend. Our kids are living in some of the best times; my faith is in future generations like your son's where the barriers of diversity mean less and less. In the final analysis, your son is going to show you where and with whom he 'fits'. This has been true with both of my children.

[rebith75]

Thanks for your thoughtful responses. It is tough because everyone is an individual, but this sort of thing is difficult not to think about. We are just trying to figure out how best to surround him, maybe down syndrome classrooms specifically or full integration (or somewhere in between) to give him the best chance at true sustaining relationships (nothing against those who are “nice” )

[kctahoe]

I had to respond to this and tell you our experience with our son, Charlie, who is now 6. Charlie is not much delayed when it comes to social situations, but is a slow learner academically. For this reason we have had him in a special education preschool in addition to more mainstream situations, from day care to homeschool groups. Charlie has found meaningful friendships in both situations, but for him, his most meaningful friendships are at his special education preschool. He has two buddies who are both right around the same developmentally as him... all three boys are very social, fun-loving, regular little boys, who happen to have special needs of various kinds. What I love about his friends is that they really are true, meaningful friendships that just happened. I see the importance is mainstreaming etc, but for our family and our son, having these meaningful friendships, with whomever, is of high priority. It breaks my heart that Charlie is headed to kindergarten next year at a different school than his buddies... a downside of having him go to the special ed school that pulls students from all over the county... but we chose a school in our town that has a special day class and is accustom to mainstreaming as well. He will get part of the day in special day class and part in a regular classroom, and my hope and what I anticipate is that he will likely make those "meaningful" best-buddy type friendships in his special day class, but also have a host of other friends in his regular classes as the teachers are enthusiastic about integrating students with special needs into the classroom culture. Also, a reason we chose to move him to a school in town instead of having him continue to go to school at the special school is it was very hard (impossible, actually) to carry his classroom friendships over into family life and community as the parents of the other children just were not interested enough in pursuing the friendship outside of school hours, and outside of town.

Anyway, all that to say, in my opinion it is very possible for your child to make meaningful friendships! I think as each child is different, you just sort of feel it out, test out different options, and eventually you will figure out what is going to facilitate that best. I've had parents tell me it was going to be up to me to be the main facilitator and cultivator of friendship for Charlie, and other parents tell me not to worry, it will just happen. I think people give their honest truthful opinions about their child (as I have just given), and what we take away is a host of considerations to keep in mind as we move forward.

_________________
Kim. Wife to Ray, Mommy to Charlie (DS), Calvin, and Miles.

[Nicola]

Gianna who is 9,does have plenty of friends in her regular class, but I can see the gap widening and know that they are just being sweet including her. We have just started this year making use of our local respite service, so that she can build relationships with other local children with disabilities. She immediately recognised one little girl who had been in early intervention with her, and they have reconnected really well in a dance class. Our respite service provides activities 2 afternoons a week in term time, and activities through out the school holidays including a camp every year. I expect that it is these relationships that will be most important to Gianna in the long run.

_________________
https://fbcdn-sphotos-f-a.akamaihd.net/hphotos-ak-frc1/457305_4140051469588_391538551_o.jpg
Mum to Brendan 18, Chiara 17, Kiernan 15, Aidan 13, Lachlan 12, Gianna 10 (DS) and Sienna 8.
"This then is what Yahweh asks of you: to act justly, to love tenderly and to walk humbly with your God."

[Nicola]

Gianna who is 9,does have plenty of friends in her regular class, but I can see the gap widening and know that they are just being sweet including her. We have just started this year making use of our local respite service, so that she can build relationships with other local children with disabilities. She immediately recognised one little girl who had been in early intervention with her, and they have reconnected really well in a dance class. Our respite service provides activities 2 afternoons a week in term time, and activities through out the school holidays including a camp every year. I expect that it is these relationships that will be most important to Gianna in the long run.

_________________
https://fbcdn-sphotos-f-a.akamaihd.net/hphotos-ak-frc1/457305_4140051469588_391538551_o.jpg
Mum to Brendan 18, Chiara 17, Kiernan 15, Aidan 13, Lachlan 12, Gianna 10 (DS) and Sienna 8.
"This then is what Yahweh asks of you: to act justly, to love tenderly and to walk humbly with your God."

[LinMac]

A big welcome to you to Downsyn!

Ah friendships.....so complicated for adults, let alone kids!
My 13 year old daughter ( not DS) is having fun negociating the world of friendships since she started secondary school last September.
I think secondary is equivilent to what you call middle school!

All her early childhood friends have gone seperate ways, some by choice, others by the fact that they no longer are in the same classroom each day.
The good thing about this is old friends have been replaced by new ones!
The last few months have made me realise how complex the whole business of friendship really are, the fact that friendship is not static, the fact that people change and need to broaden their horizons.....man its been difficult!

Now to Robert, to be honest 'real' friendships are not on the radar just now!
This is nothing to do with the other kids, but rather Robert's personality.
Hes quite self contained and self relient.
We attend after school clubs, he's aware of the other kids and knows them by name but he's just seems content in his own self.

I'm hoping this will unfold for him over time.
Perhaps he's just not at that level yet? I'm not sure, but I'm taking my que for Robert. If its ok with him, its ok with me!

We joined a special needs Saturday club last September. He goes 3 Saturdays a month. He likes the activities. Like Nicola I'm hoping over time this will be a good source of fun and friendship for Robert.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)


First day at school

[seansmom]

Linda I have a 13 yr old daughter too. So much fun! Ha! The whole friendship thing is a rollercoaster! She is going into high school next year and I keep telling her the same thing. Friendships change and the people you hang out with now may move on as will she...

Sean is the same as Robert. I bring him to activities but he pretty much ignores the other kids. At school he has friends and on some days he will play with them on the playground but other days he wants to be on his own. He hasn't developed any relationships where they come over for playdates. It makes me sad but by grade 4 the typical kids are doing their own thing and he is just not on the same level.

In grade 7 I am looking at a different program for him so he can start to develop some close friendships with other kids who have DS. I think they will be his support system as he grows up.

It's a hard balance. I struggle with it. He has a birthday party and all of the kids show up but he seldom gets invited to one. Luckily I don't think he knows the difference at this time. I wish I had more friends with young kids but I don't. I will keep putting him in different activities in the mean time to see if he connects.

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Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

[LinMac]

Kellie

You're so right! Robert and Sean are in the same place with the exception of the party thing.
Robert's been to quite a few parties over the last three years, four or five each year ( 28 in class).
The recession here has limited the party events alot.

The Saturday S/N social club is good Kellie cos it has junior, middle and senior club.
Robert is in juniors right now, he can over time graduate to middle club, then the senior club.
The important word here is 'over time', which is what Robert really needs!

I too struggle with the friendship thing!!
For me its been an eye opener, and I've learned that its up to each child to pick their friends!
As much as I'd like Robert or Hannah to be with so and so, it's they who decide, not me!
That's been a big learning lesson for me!

Funny though....friendships are not such a big deal for Robert as it is for Hannah right now!

The whole issue of friendships has tested my parenting skills to the limits these last two years!

Thanks Kellie for replying and making me feel like I'm not alone!

Sorry OP, didn't meant to take over your thread!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)


First day at school

[seansmom]

You're welcome Linda!

Tell me a bit about the special needs social club. It's sounds intriguing. I might be able to introduce the idea to an organization here that has the right building to present a club like that.

Thanks!

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Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

[JanAndFamily]

Hi and welcome.

My son in only 4.5, so I can't speak a lot on this subject yet. I thought I would post a link that I found insightful though:
http://www.down-syndrome.org/information/education/overview/?page=1
It's an article by DownsEd (Down Syndrome Education International - you want to learn about them and read some of their Issues and Information articles if you haven't yet - great stuff!). It's about education, particularly the results of several studies comparing mainstreamed children with DS to those in special schools. The mainstreamed kids came out ahead in everything EXCEPT they didn't have close friendships like the kids in special school did.

I haven't really resolved this question in my mind yet, and I think it depends a lot on the individual child and what options are available in a given area. Some moms on here have said their children have found their closest friends (with DS) through Special Olympics. That could allow a child to get the benefits of mainstreaming but still make some friends with DS.

_________________
wife and mother of Katherine (2004) and Christopher (Aug. 2007, DS)

[LinMac]

Kellie

Sorry for the lateness in replying. Its a bank holiday here this weekend.....things are running away for me!

Sorry this is such a long post.....I was going to pm you but maybe other parents might want to read about the club and set one up for themselves!

We joined the South Dublin Arch club last September. My friend Michelle had her son enrolled in it and she told us to come alone and see if it suited Robert.

Like the original posted said, I too was concerned about Robert making friends and the fact that he wasn't doing any organized activity on a Saturday.
I found it hard 'to put the day down' as he was getting older.

The club is run three out of four Saturdays in a month, from 2:30pm - 4:30pm, September to June.
It's open to kids with disabilities and their siblings. Currently they have 40 families involved. About 25 kids come each week.

The first hour is organized activities like music, or drame, or dance or YOGA or sport, etc. The next hour the kids have a snack break and they play unstructured games, or with the toys and balls. Some of the kids like to just run around in the big hall!

There have been a few outings to the cinema, aquirium, tayto park, puppet theatre, and a big outing to Cosey Farm at Christmas to see Santa! We've been to the cinema with the club.

The club is run by the moms and dads! If your kids is in the club you are required to be on supervision dutues once every 5/6 weeks. There is a rota on the web site so you know in advance what weeks you are require to supervise.
Most parents drop their kids off at 2:30 and collect them at 4:30.
With Robert one of us stay outside the room so he has us at hand if he needs us! That's not a problem, I'm hoping next year to be able to pull back and let him do it all himself.

The club also have an arrangement with local schoosl for young adults who want work experience with s/n to come along and help with the kids. 6 / 8 young adults show up each week and are wonderful with the kids.

The membership of the club is 100 euro per year. They club have secured funding from a few agencies and private sources so we don't pay anything when we attend the club or when we go on any outside activities.
Most places here give a discount to s/n groups!

The club also have a middle and senior group. I attended the AGM earlier in the year. The adults in the senior club had been away to an outdoor activity centre for a week! The scared me even thinking about that for Robert!
They too met three times a month, on Friday evenings.

With Robert it takes a lot of time for him to get 'used' to the room, routines, new people, etc.
The last time we were there it was a music day. I was amazed at how some kids were able to come up and do their own song! Roberts requested 'hokey pokey' and had the whole room dancing to his favourite song!

The club has been a very positive thing for Robert and us. I've been able to network with other parents and just get the low down on their kids, the services they get, the schools they attend, etc.

The only down side is we havn't been able to attend as much as I initially thought last September. Robert had a lot of illness this year, more than any other year. I'm hoping next year will be a better one for him.
I also feel we'll be in the club for many years....so in the big picuture of things it's not that big a deal.

Below is a link to the club Kellie. Its affilated to the L'Arche movement, worth googling that!
http://www.dsjarchclub.com/

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)


First day at school

[seansmom]

Linda

Wow! That sounds like a great club! I checked out the website and I'm going to print a bunch of stuff off. Hopefully I can talk to some other mom's and the local DS society and see if we can get something going.

Thanks for the info!

Kellie

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Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs