What's Down syndrome go to do with it?

[Jessie]

This is just a general question I'm throwing out here because I'm interested in hearing different opinions - and I'm sure there will be differing opinions on this!

Hopefully I can explain well enough what I'm asking. How much does Ds have to do with everything that happens with your child? It seems like there are quite a few things posted on here that I end up thinking, well that's typical for any child, not just because they have Ds.

So . . . do you think Ds is the direct cause of everything that your child goes through, or does Ds simply affect everything that your child goes through? KWIM?

Right now, with Jason going through puberty, I think, well, he's a 12 year old boy going through puberty - there are going to be behavioral issues. I don't believe that Ds is necessarily the cause for his behavioral issues. It may make it a little tougher for us to explain things to him or for him to understand what is going on - but then again - isn't it hard for any 12 year old to understand what's going on when their bodies are changing?

When I read posts like the throwing food, potty training (ok, that one may be a little more severe w/Ds kids), picking the right programs for them to be in, interacting with other people, etc., etc., how much of it is just general kid stuff? If you took out the extra chromosone, would that child still have the same difficulty in a particular area, just maybe not to the same extent?

Again, not looking for advice, just looking for opinions.

Jessie

[Alice]

"So . . . do you think Ds is the direct cause of everything that your child goes through, or does Ds simply affect everything that your child goes through?"

Hhmm...
I can not tell for all but I know that DS is direct cause for speech delay and delayed speech is a cause that Luke is throwing things to get an attention.
Our son is only 5 and I think later on we will see how DS affects his life.
I am sure that with out DS he would be totaly different person having less problems in his life.
You asked about opinion - that was mine.

[momofrussell]

I get what you are asking...

I think DS maybe the direct cause for SOME things... not all, but some... but I think that even if DS is the direct cause for somethings, it can also happen in a typical child and should be handled the same way regardless. Now, I know there are some things outside that box but for the most part, even though Russell has DS and yes, his Autism and vision impairments effect WHO he is, most of what Russell goes through, my girls have and I try to tackle it the same. I sometimes have to deal with some of the issues longer, the severity and adjust things at times, but I agree... lots of issues discussed here are also issues you'd read about if you went to a typical parenting board.

One of our Mantra's here is... "Take away the 3rd chromosome, Russell is STILL all boy!"

I hope I made sense.....

A.

[Valerie]

I think it's both, typical problems, and problems due to having down syndrome.
For the most part, we think of Nicholas as a little BOY and treat him as such. But there are definitely some areas where the DS comes into play. For example, I know a lot of toddlers go through the playing with food stage, but I wondered if his was worse because of the texture problem. I also know that a lot of kids don't like loud noises, but I wondered if there was more to it than that with him, because it seemed SO EXTREME! Like he was genuinely terrorized in some circumstances. Wasn't sure if DS played a part in that, and that's why I asked if anyone else had noticed that. Seems it may be another sensory thing.
Also, all parents worry about the health of their children, but we worried MORE about him because of the heart defect he was born with.
So I think there are things that are definitely affected by the DS, but mostly he's just our little boy.

[Jessie]

Valerie - you touched on a point that I meant to include in my post but forgot. I will have to admit that I am maybe a little LESS sensitive to the Ds factor because, 1. Jason never has and still does not have any health issues. He is a very lucky boy in that respect. 2. I didn't give birth to him and maybe it's just a little lack of maternal "stuff" that I'm missing. I don't want to sound cold, because I do love the kid and I'm glad he's in my life, I just don't like to blame everything he does on Ds.

I can't even imagine what alot of you have gone through seeing your babies hooked up to wires and tubes and then struggling through health issues PLUS trying to raise them to be the best they can be, despite the odds stacked against them.

Kudos to all of you and everything you do on a daily basis for your kiddos!


Jessie

[christie]

K, DON't SHOOT me PLEASE ;D

BUT my opinion is "Ds is the direct cause of everything that your child goes through" ...

Yes, of course our kids go thru all that typical kids do, such as need to be potty trained, learing manners, puberty, etc. BUT the big difference I believe is the DS with these issues hence why I am even here at this board

Sooo much makes it so much harder for our kids, speech, delays, low tone issues, comprehension issues, health issues, fine motor and such. THANKFULLY not every child will have each and all the issues that come with DS but they will have issues due to DS.

I personally think the "treat as any child" can come into play sometimes BUT honestly each and every child in this world is different with or without DS. Soooo I am not sure I agree with that thinking, KWIM and in all honesty if that were the case why do we want things adapted in IEP's

K, I rambled long enough, now going to duck the bullets

CC ~

[momofrussell]

CC, you crack me up girl.. quit thinking your honesty gets you a guest spot on the firering squad's wall. LMAO! I love your honesty.. and it's not like it's so off the wall!

I agree with what you are saying... most kids are different. When I responded I was looking at more of the general things... like Potty Training, ect.... not the stuff that makes our kids different then the next. So I hear what you are saying too!



A.

[Emilysmom]

Jessie~
I do think I understand exactly what you are asking....and it is definitely something to think about!!

In thinking about this topic, I first had to think of the types of things we have had to "deal with" over the years with Emily. Just a couple examples would be:

1. She was nearly 3 when she was finally walking completely independently. I must say that Ds is 100% the reason for her delay in this area. Her brothers were under 12 months when they began walking. It took lots more "practice" and therapy for Em to get the hang of it. I think it is very very common for babies with Ds to be late walkers.

2. She can make a TOTAL WRECK of her room in NO time!! And she has little or no interest in cleaning it up! Is this the Down syndrome??? LOL well maybe just a little. I think it is just Em being a kid. I do think she lacks the organizational skills needed to do a really GOOD job of cleaning everything up though, and I do have to blame Ds for that.

3. It takes an extra long time for Emily to get ready for school in the mornings. She tends to have to do all the steps of getting ready in pretty much the same order, or else it takes her even longer to get finished! In fact, when she takes a shower, she LOVES to have me stand in the bathroom and "remind" her which ORDER to wash each body part in!!! Would she do this if she did not have Ds? I don't think so. We have to allow extra time for her in the mornings because of this.

4. And last but definitely not least......I firmly believe that the BIGGEST problem Emily has is her difficulty with communication. What I noticed after being on the Girl Scout trip with her and 9 other girls her age is that she is SO SO SO like them!! What sets her apart, to me, is that she is truly NOT able to keep up in a conversation!! The other girls talk a mile a minute, change topics at the drop of a hat, and never have to struggle to understand what each other is saying....like they do when Em speaks. And I believe THAT is the one thing that prevents her from being totally included! I think this is the one thing that saddens me MOST, and I have to blame that extra chromosome totally for that. Not only is her speech a bit hard to understand, but she is still not able to put together LONG sentences like her friends do.......again, that is the Ds. BREAKS my heart cause I am sure she has so much to say to everyone!!! So, when she gets frustrated or yells "leave me alone" at her brothers.....I do think it has to do with the Ds related speech issues.
~
On the other hand......there is not a day that goes by that she does not tell me how much she loves me, and she even hugs and kisses me. How typical is that for an almost 14 year old???? LOL I'm thinking I have to blame the Ds for many of her POSITIVE traits too.

WHEW! That was longer than I planned, and I'm not sure if it answers your question at all....but thanks for making me think!!

Susan

[Jodi]

What's Down syndrome go to do with it? My short answer is it has everything to do with it.

It affects all areas of Ryan's development; cognitive, physical, and social.

I try to avoid using Ds as an "excuse" when dealing with difficult situations (behavior problems, potty training (LOL), among other things). However, I must at least consider the possibility it MAY have something to do with the difficult situation in order to best solve the problem at hand. Sometimes it is very easy to tell. Unfortunately there are times when there is no clear answer, and I am left guessing.

Jodi

[PaigesMom]

I think I still waver on this one. Sometimes I think DS has everything to do with it, and then sometimes I feel like I am looking to point 'blame' or look for a copout for things that are just typical *age appropriate* development (meaning where she is cognitively, not chronologically in age). So I sway back and forth. I do think there are constants though, like being in 'stages' longer, etc.

[caitlynjoy]

I believe there are definitely differences. I have 2 girls, Casey is 5 and typical, and Caitlyn is 4 DS. Caitlyn had open heart surgery at 2 mos. old and pt, ot, st, from 4 mos. old. Caitlyn is very healthy, speaks very well, and has high muscle tone for having DS which I think contributes to much of her success with speech and other fine motor skills. Her comprehension is also really good and she is very active and curious and social. It's hard to explain the difference in comprehension tho because she knows exactly what she's doing when she's being naughty, however it's almost like she thinks it's a game. She can turn a box of cheerios upside down and then say uh oh mommy, it's a mess! So she knows what she's doing but doesn't get that it's "wrong". It's almost like in her world nothing is "wrong" it's just getting a reaction. A lot of what she does is to spark a reaction from either me, her sister, her daddy etc. The other example is wanting things, Caitlyn never asks for anything (except chocolate, ice cream, candy), like toys she sees on t.v. or in the store. My other daughter started asking for stuff at 2 or 3. Caitlyn is happy playing with things while we're in the store, but could care less to have it. It's so hard to explain exactly what it is that's different but there defintely is differences. The differences that I love about Caitlyn are that she never notices the differences in people whether it be color, disability, short or tall, skinny or heavy, she talks to anybody, hugs anybody, and genuinely likes everybody she comes in contact with. My other daughter notices everything and questions everything. I don't know if any of what I wrote makes sense, it's just how I see it between my 2 girls. I don't have time to write more right now but I think I got the gyst of it down.

Lynn

[jeannette]

Hello Guys,

Here's my take on it. I think yes, the developmental milestones our kids have are directly related to having ds. If that was not the case we all would be going crazy our of our minds trying to figure out why there not doing this at this age or not socializing or something. At least we know our kids develop slower mentally and physically because of ds. Statistics proves it.

I know some of you don't won't to blame it all on ds but to me that's just a fact. Maybe some social skills or things related to puberty don't relate to ds but mostly everthing.

MeKyah is 16 1/2 months and not walking yet and that's okay because I know the reason why. She is making constant progress. She cruises everything she pulls up on even flat surfaces. She has a speed crawl that gets her across the room in a flash. She doesn't say one word expressions, try to ask for what she wants but she babbles a lot and makes all different kids of sounds and facial expressions. It's okay she's not doing all the things she should be for her age. We are doing everything possible to help her progress in these areas and that's all we all can do.

Get what I'm saying. There's a reason why our children are delayed.

Jeannette

[momofrussell]

Maybe I interpreted Jessie's original post differently here after reading all your posts. I agree there are LOTS of differences between a typical child and one with DS... I thought she was touching more on typical "milestones" (for lack of a better term) that our child will also go through like Potty Training, throwing food, ect... Granted, DS does delay when they have the milestones and puts a nice DS spin on them and makes them a bit different then a typical child, but do you handle your child w/DS totally differently then your typical child on potty training? Or if your child is throwing food would you approach them differently then if your typical child? I mean, Russell would not BE Russell and who he is if he did NOT have DS... and there are BIG differences between him and my girls... but some things we encounter with him, like yes, he did throw food, we approached the same way as with our daughters af it they were to do it.

Maybe I misunderstood her post? LOL....Which does happen on occasion.....

A.

[Jessie]

Uh, well, after reading everyone's posts, I'm not even sure I know what I was trying to get at! LMAO ;D ;D

Actually, Adrienne hit on it exactly. When it comes to typical milestones for our Ds kids, is it really any different than with other kids? I know they may take a little longer and have to be told to do something repeatedly until they get the hang of it, but are those struggles out of the ordinary?

I guess when I look at Jason I think, ok, he's very slow. But, I don't believe that he can't do it or "get" it, whatever the task at hand is. If his verbal skills were higher, I know he would be considered a high functioning Ds person. Does that sound silly - if only he could talk, right? But I know that he "gets" it most of the time - and most of the time on the first go 'round. But . . . if I ever sound like I am denying his Ds the blame it deserves, go ahead and let me know because I don't mean to sound like I am in denial.

Because I didn't raise him from the ground up I just got to thinking about those milestones and if they are the same or different from other kids, all based on everyone's posts here.

So, anyway, like I said in my original post, I was just interested in everyone's opinions and thought it would be a good conversation piece.

Jessie

[Renee']

It has everything to do with because our society has made it that way. At times I feel like Lauren is a square peg trying to be shoved in a round world.

For me I treat her normal. I have very high expectations and I hold her accountable.
She has a speech problem. DS is the cause. She is 6 and not potty trained. DS is a factor.

It all ties together for me