K, I have to ask, hope you don't....

[CC]

get upset BUT with the potty thread and some other threads lately I am like wondering WTF?? LOL

Honestly if you were your kid with a disability wouldn't you just get sick of someone trying to make you who you are not?? Hmmmm

I am not saying babying anyone here BUT Geeze Louise I wasn't ever that hard on Kodi why the heck would I be with Chris ?? She turned out just fine...

All in good time is my motto

K, just had to get that off my chest, hope you ALL are OK with it

CC ~

[Ericsmomma]

CC,

I know what you mean.....I've noticed lately that Eric (who doesn't talk at all) will get so frustrated with me when I'm trying to get him to do things. Maybe he doesn't want to eat a certain food...maybe he hates it! Or he doesn't like the shoes I put on him, maybe they hurt,
or he despises "coloring"....he prefers music. I never pushed my other "typical kids", but I feel like I need to with Eric. Sometimes I think I forget he's just a little boy. I feel like I'm always on "teaching mode" and should just be on "fun momma" mode. Gotta work on that.

[laurasnowbird]

There is a fine line between pushing too hard, and not pushing when you need to. I'm constantly struggling with where that line is. And I used to feel like I was falling down on the job of being the fun momma (as Dolly put it so well), but not any longer. It took me awhile to find the balance.

And Christie, you know I love you girl, so I know you won't take this wrong either. BUT, for me, it is pretty simple. Ethan ISN'T like Victoria in a lot of ways. That is why there is an billion word federal law that preserves and protects his rights as a person with a disability. Life in our house is different now, and that is a simple fact for us. It will never be the same for any of my family. Both of my older kids (Nick and Victoria) talk about wanting to take care of Ethan when we aren't here to do it. I have told them repeatedly that there is nooooo expectation on our part that they do that. We hope to have him independent enough to live a full life that they may only be called upon to "supervise" once in a while, KWIM?

Bottom line is, we all do what we think is best for our child. There probably isn't one of us among this group who doesn't think their kid "hung the moon" to use an old saying. You and I are huge educational advocates, and stay all over our school about stuff. Other people might look at that and say, WTF? Why don't you guys relax?

As far as trying to make him someone he is not, we all do that. We don't send our "typical" kids to therapists, OTs, PTs, STs, etc. etc. etc. When I feel like it is too much for Ethan, I call an abrupt halt to it. He has four half days a week this year, and two that are full days. I was feeling like that was a lot for him, so ST and PT went out the window for now. His OT works a lot on his sensory issues, which really interfere with his enjoyment of life, so that is a huge quality of life issue to me, and I don't often give him a break from OT.

Maybe you are getting the impression that Ethan is being pushed because I finally posted some things that have been going on for awhile. This isn't all happening today, KWIM?

[Jessie]

Not that I feel I have to defend my actions for doing what I think is best for my kid, but I'll add my 2 cents anyway. Jason is almost 14 years old and refuses to go to the bathroom unless someone tells him to, he acts like a 2 year old when he gets in trouble, growls like a baby AT his baby sister when she makes a peep . . . so you tell me, doesn't he NEED to be pushed into learning what's right? In my opinion there are rules to be followed whether you have a disability or not. If there's one thing I've learned about Jason it's that he does not automatically learn things on his own like "typical" kids do. It's our job to show him the way, especially when it comes to a human body function like peeing when he needs to!


Jessie

[MB]

Laura wrote, "We hope to have him independent enough to live a full life."

How in the world is someone who is not even potty trained going to live on his own? How is someone who refuses to adher to any rules except the ones made up in his head going to hold onto a job? (BTW, 90% of adults with Ds are unemployed or underemployed.)

I am wondering if you are thinking that holding the line on potty training means that my son has no choices in life? On the flip side of holding a hard line on behavior is the opportunity for him to pursue his passions in life. He loves woodworking, going out with friends, playstation, basketball, writing rap music, pro wrestling, choir, pro football, American history, going to movies and plays, surfing the net and breakdancing. He is happily engaged in these activities.

He hates math, soccer, organized baseball, any kind of lecture, learning proper keyboarding skills, being prompted to do the obvious and dining at restaurants that do not serve cheeseburgers. His math curriculum is wrapped around his desire to live independently. He is not required to play soccer or baseball. His IEP is set up to avoid long lectures. He is proficient on the keyboard, if a little slow. Being prompted constantly is insulting so the teachers and paras have been instructed to back off. As for the cheeseburgers, he's got to compromise every once in a while and so do we.

I know that he will never be successful at a job where he has to do repetitive motions all day. He will fail if he is socially isolated and is left without any responsibilities. He will need a trusted team on his job to help him monitor the social misbehaviors that so many of our young adults with Ds exhibit and for which they are subsequently fired.

No, I won't let him put black eyeliner on and dress like a Goth to go to the overwhelmingly preppie high school. But I will stand back and watch him wear a sports jersey and sweats every day because that is the style with which he is comfortable. Do I point out the cool kids wearing cargo shorts and polos? Yes. Will he willingly wear them for special occasions? Yes.

Potty trained? Don't run away? Feed yourself? I gotta tell ya, if that is pushing too hard, someone better call the humane society because I hold the same standards for the dog.

mb

[ALLISA]

First of all...I am LMAO becuase CC said WTF ..... I didn't know you were a potty mouth CC ! (Still LMAO)

Anyways...now that I am over that shock, I want to say that I am pretty confident that CC feels the same way as everyone....she believes in potty training and dressing etc....she just wonders why it needs to be mastered in 4 days....and as far as I can see no one answered that.

It's funny you mentioned the humane society and standards for the dog MB....because I was actually thinking this myself yesterday....I had posted that Erin was nonverbal and would be hard for her to tell teacher she needs to use the restroom......then as I was rethinking.....I realized how "easily" a pet can be trained and last time I checked.....they, too were nonverbal.

But there is still a gap that hasn't been brought to light.....for a long time Erin lacked most interaction skills.....it goes BEYOND nonverbal, to not even caring to interact with anyone or feel proud to be a "big girl"....it goes beyond DS and delays.....


So for me.....my choice is ......do I wait until she is old enough to carry a conversation with me ( through speech, sign or pecs) and to UNDERSTAND me when I tell her no TV becasue you peed while watching it.

OR

Train her now, so that she reaches a milestone that PHYSICALLY she is capable of even though she doesn't UNDERSTAND that lack of TV is a result of wet pants because she REALLY doesn't make that connection.....

and that isn't me having low standards for my child.....that is me.....very sadly coming to this realization after loving, caring and learingn with her for almost 7 years now. That doesn't mean I think she will NEVER have understanding and make that connection.....I KNOW she will....but it takes a hell of a lot longer for her than others and that is our reality.


And that is why I keep saying that for those having a tougher time....DO NOT feel like a failure.....I'm not saying give up completely......but know when to back off and when to push....because MB is right that ALL KIDS need a push and a high expectation set on them.....but not all expectations will be met at the same chronologcal age and not all expectations will be the same for every kid.....have confidence in yourself that you will set the expectation approrpriately.

When Erin was born I had the HIGHEST expectations for her.....I wasn't an emotional mess worrying about what she "wouldn't do".....I KNEW she'd do EVERYTHING......

Six years later.....I still have high expectations.....but they are high for HER......others may not think they are high for where there child is.....but for HER they fit.

I was looking through baby pics the other day....there are practically NONE where Erin is LOOKING at the camera.....she has more obastacles in her way than DS....and many other children are in the same boat as her.

My sincere apologies for the lenght of this post !!! To get back to my poiint of 2 days ago....ALL kids are different .....figure out what will work for you and do it.....I'm 100% confident that MB's approach would work like a charm on Erin....BUT.....not for another couple of years.....so I chose instead to train her earlier and in a longer fashion....is one of our methods better than the other ? I don' think so......as long as they are both peeing independently...what does it matter ?

Allisa

[laurasnowbird]

Amen, Allisa, and very well said. If we have to apologize for the length of our posts though, I am long overdue. Mea culpa!!!

You are dealing with completely different circumstances when you add in the autistic tendencies, and it would be completely unfair and unkind to Erin for you to pretend they don't exist. Of course, you are a great mom, so no danger of that! ;D I agree that our kids are all different in what they can do.

I don't think I'm pushing Ethan really hard. I do think I'm giving him am opportunity to show me if he's capable, but I've learned that he's never ready unless there's something in it for him, LOL! Like all of us, he does things because HE gets something from it. I don't think anyone ever said it had to be done in four days, MB just said that's how long it took her son when she got serious about it. I haven't heard anyone holding that up as the standard, although I'd be pleased as punch if Ethan got it in that time frame!!!!! I didn't see CC questioning the four day time frame, I saw her questioning what she sees as pushing.

And Allisa, I'm totally with you on the high expectation reference. All of our kids need high expectation, and it is up to us as parents to recognize their abilities and what constitutes a high expectation for our child. I love to come here for advice and ideas, but I don't think it appropriate for someone to challenge what I consider a reasonable expectation for MY child. If Ethan is unable to do this now, then we'll table it until he is. But not until I know, and not until he has that chance.

[cindylou]

I'm thinking the question was not about the desire to have our kids living and functioning independently (using the bathroom, having appropriate behavior, etc) as much as it was about the method.

I think whatever works for each family is good--all the suggestions are helpful, but sometimes the tone comes across as "I'm perfect and this is the absolute way to do it." and that can be very discouraging for other parents.

I think that was CC's concern and mine as well. (Sorry, I'm not trying to speak for you CC--correct me if I'm wrong-)

Also--each child is cognitively different then the other (ds or not) and developes at a different rate...

btw Jessie-Kaylee does the growl thing to sometimes! I told her it's not normal! We tend to talk pretty straight around here!!

cindy

[laurasnowbird]

Cindylou,

If you re-read the toilet training thread that Kellie started, lots of folks have posted to say they felt encouraged to read all the different methods, and that others were struggling with it as well. It helps to know that your particular child is not the only one experiencing some delay in what is considered normal toileting. People have talked about different methods and what worked for them. Going cold turkey, just doing the nights first, prompting every two hours, etc.

I'm not sure who's coming across as perfect, but I know it's not me. My kid is the one who peed all over everything yesterday. MB does give very concise advice, but it was MY choice to give it a try, because it seemed like an appropriate fit for MY child. I didn't get the impression that others felt unable to share their experiences, or felt like MB's advice was a dictate about how to train their child. I don't think MB said her advice was the only way to do this, but she did say for her method to work you had to do A, B, C.

And I think we are splitting hairs here. We can say "all in good time", but in a previous post, someone referenced consulting an expert to get help with their child's toilet training. That is not letting things come naturally, that is recognizing that you need some help accomplishing something you know you need to do because it is taking too long to come naturally. I think that is what we've all been doing here. This is a subject that many of us struggle with, and if some feel the need to make a hard run at it, then that's OK. If others want to wait, thats OK too. Because at the end of the day, we all LIVE with our kids and their behaviors. And WE have to decide what is acceptable for our families. I personally am not OK with changing diapers on a 5 year old if can do it on his own. I was toying with the idea of getting serious about potty training, and Kellie's post made me think more about it. MB's advice seemed like good advice, and remember, I ASKED for it, and asked for additional tips in a couple of follow up posts.

And honestly, what was wrong with the method? I used the same method with Victoria and Nick. The diapers, when they were ready, were disposed of. I knew I was serious, they knew I was serious, and then it was done. It was really not a big deal. It might work for Ethan, it might not. He might not be physically ready yet.

But I'm not afraid to put it out there and share what we're doing, because even if it doesn't work now, he'll eventually get there. And I won't be embarassed to share that we are tabling the effort if it is too early for him. It doesn't take anything away from the awesome person Ethan is!

and by the way, the growl thing cracks me up, cuz Ethan will come home from school, all grouchy with me, and be growling with me about stuff. I'll say "that's enough, we don't growl at people, and if it doesn't stop, you'll go to your room. Do you think you can apologize to Mommy?" And he'll say in his sweetest tone "Sorry Mommy", and quit the growling. ROTFLMAO! Little stinker

[cindylou]

I guess I was not articulate enough.

I think all the different methods are nice and helpful to people reading. (I did state that)

When I used the word "method" in my previous post I meant to announce that this is the METHOD and do this and it will always work is quite arrogant and can be off-putting to some reading and discouraging for others that 'fail'.

Maybe I'm being to sensitive about what I think others may be feeling but I personally think its nice if we qualify our statements by saying 'this is what worked for me..." in a bit more humble fashion.

Guess I'm splitting hairs here and again everyone is free to post how and whatever they like at uno...

I have always been extremely demanding of Kaylee and will continue to be--she has to fit into the real world and not vice versa-so that has always been the approach I have taken and will continue to take.

Just wanting to remind others to be sensitive to the way things come across....or not.
cindy

[Jessie]

Allisa - although I don't know what it's like to have the autism aspect to deal with, I do completely understand where you are coming from with the communication end of things and making a connection where you feel your child is "getting it". Jason has such unintelligble speech that he may as well be considered non-verbal. Sometimes when I'm talking to him I'm not sure he's "getting it".

I can tell you from my experience though that you guys don't want your child to get to Jason's age and still have toilet issues. He goes, he's been trained since he was 8 years old, but to still have to be TOLD to go is ridiculous. Don't assume that everything will come naturally (kinda speaking to everyone, not just to Allisa ).

What strikes me as kind of weird when we get into these debates is that on one hand all of the momma bears on here will go to the mat defending their special needs child and making sure that everyone knows they are a human being just like everyone else on the planet. But, when it comes to pushing them to another level or being strict, whatever, some people get so defensive about putting expectations on their special needs child.


Jessie

[laurasnowbird]

Sorry if I gave anyone the impression that there was a particular "method" that had to be followed. I don't believe that for a moment, nor do I believe I implied that, especially since I went out looking for information targeted to toilet training autistic children for Allisa and others whose children are dually diagnosed. I did try the method that MB offered, and that was my choice.

The number of people reading the toilet training thread leads me to believe that lots of people are struggling with this issue and looking for help and reassurance.

[hidyperson]

Wow. Post Christmas posting. I read one of those " people with DS are just like everyone else and will do EVERYTHING you do, it will just take a little longer" comments. I snorted my usual snort of derision. Morons. Sheesh - you're not helping anyone if you pretend they're someone else.

Anyways... so I come bopping in here and am struck by just smart and aware real you guys are. Good for you guys.

Oh, and we had to deal with an accident yesterday. Sigh...

[hidyperson]

From MB " How is someone who refuses to adher to any rules except the ones made up in his head going to hold onto a job? (BTW, 90% of adults with Ds are unemployed or underemployed.)"- I laughed out loud at this.

I had to put a lock on the pantry to keep my pal from eating every lunch snack in the house ( in one sitting ) or dragging sopping wet towels out of the dryer and up the stairs, just because she likes putting things away.

One day I found her trying to pick the lock. She turns to me and say's " it's locked." I've learned that padding your words get you no where with her so I say " Yea I lock it keep you out." She doesn't blink.
" It's locked."
" Yea to keep -" and so it goes. She has no guilt, or anger or anything concerning this. She completely writes her own script concerning the rules of reality. Or " refuses to adher to any rules except the ones made up in his head" He he he he he - oh my.

[Jessie]

You know Jeff, if we were able to understand Jason I bet he would come up with the exact same things to say as your roommate does. He lives in a "it's all about me world". LOL