Do you ever feel misunderstood about your child with sn?

[littleWMN]

If you only did this or that, they'd be fine. She speaks, so she must not have special needs. She doesn't look like she has a syndrome.

 

So, I'm either overprotective, neglectful, too involved, not involved enough, overreacting, negative, etc.

 

She was recently diagnosed having a genetic disorder that causes cognitive disability.

[HollyM]

Oh yes. :grouphug: My family thinks my son would be just fine in a PS environment (he has moderate-severe dyslexia.) They just don't understand and I have learned to ignore it. Sometimes, some people just aren't going to "get" a thing unless they have experienced it first hand.

[Celia]

Oh yeah.

 

I bet the greater portion of aquaintances that I have (not friends) think I'm overprotective, or overly concerned about it.

 

He has high functioning autism, and at first, seems like a normal, happy kid. It's when you get to know him that you see his challenges that he faces with things like transitioning, social stuff, writing, ect.

 

We have to be careful with him, because disruptions to routine can take him a really loooooong time to recover from. Even being out late causes him such a problem for sleeping for the following week. Plus he goes and does unexpected things. Wandering off alone. No stranger danger.

 

People don't see his disability, and they think I'm a worry wart. Poo poo to them, I'm going by what works for my kiddo and will ignore it the best I can!!

[Love_to_Read]

Yes!

 

I think mild disabilities are particularly misunderstood. If your child is miserably failing in a school setting but an earnest kid who tries hard, then you might get sympathy and a dx....maybe...probably only if your kid is severe enough to be obviously, physically, visably out of it. But if your kid looks normal and is not quite failing, just struggling, it's not really a disability. If your kid is getting frustrated, surly, or otherwise fed up with being overwhelmed, then it's an attitude problem, not really a learning disability. If you've always educated at home, then it's your teaching. Not a disability. If your child has any strengths to compensate, like a dyslexic with good guessing skills, then no disability...just an average kid who should be content to barely pass. Arrrrrrgh!!!!!!!

 

The beauty of homeschooling is that I can adapt whether people believe me or not...I can use programs for dyslexics that the schools didn't think we needed (if we can afford them...). I can allow oral narration instead of writing everything. I can do whatever I think best to work toward helping her be her best.

 

The only time I did respect someone telling me different was with a couple of dd's therapists who pointed out that dd had progressed, and that she could do better than I was asking. I *had* gotten used to her having trouble with certain things, and hadn't remembered to push a little. So, valuable lesson--don't get so caught up in awareness of the needs that you don't see areas of growth, that you forget to promote growth, forget to ask your child to keep trying. Sometimes we get all nurturing and forget that growth can be hard, might require pushing a tiny bit out of our child's comfort zone.

 

But yeah, 99% of the time, the other person has no clue, and you know your child best. Those mild needs are real, and it's not in your head nor a result of your parenting/teaching!

Edited August 12, 2011 by Love_to_Read

[Ottakee]

The only time I did respect someone telling me different was with a couple of dd's therapists who pointed out that dd had progressed, and that she could do better than I was asking. I *had* gotten used to her having trouble with certain things, and hadn't remembered to push a little. So, valuable lesson--don't get so caught up in awareness of the needs that you don't see areas of growth, that you forget to promote growth, forget to ask your child to keep trying. Sometimes we get all nurturing and forget that growth can be hard, might require pushing a tiny bit out of our child's comfort zone.

 

!

 

This is so true. It is a hard balance to get the most out of the kids and challenge them but also be aware of the struggles.

 

I know that on occ. my kids will try to play the "special needs" card:glare: but it doesn't work here if it is something I know they can do.

 

I even had one child here (respite kid)that said he could not help in the garden because "you know I was abused and neglected" (he was adopted through foster care) and I promptly told him that so were ALL of the rest of the kids here (we had our 3 adopted and some fosters at the time) so GET TO WORK.

[Murmer]

Yep told yesterday that ADHD was mostly just really busy kids and most are not really ADHD...I wanted to scream my child behaved because she is on ADHD med and has been having intensive therapy not because she was misdiagnosised...I hate the whole ADHD is not real thing and since my dd is so young I understand why people have a hard time but they didn't see her prediagnosis they didn't know about my 2 year old that literally couldn't play with toys any toys at all...She doesn't look special and she is tall so people expect her to behave older than she is and then when I say she has needs they look at me like I have 2 heads. Grrr

[elise1mds]

I know that on occ. my kids will try to play the "special needs" card:glare: but it doesn't work here if it is something I know they can do.

 

I'm glad mine isn't the only one that tries that particular stunt. Last year, the week before I put DS back on meds for his ADHD, he was acting up in swim class and tried to blame it on the ADHD. Uh, yeah, NO. Nice try, Mr. McFly, but I know better... and thankfully so did his teacher.

 

I hate the whole ADHD is not real thing [cut edit] She doesn't look special and she is tall so people expect her to behave older than she is and then when I say she has needs they look at me like I have 2 heads. Grrr

 

My kids are both tall, so when they act up, they sometimes get some interesting looks. Sometimes I just want to stick my tongue out at people and prove them all right :tongue_smilie: I also ran across a web site the other day - run by a homeschooling mother, no less - who says that ADHD and other psychiatric disabilities are caused entirely by diet. Just makes me want to vomit. Yes, diet can play a ROLE, but study after study indicates that these problems are genetic, not the product of one slice of white bread he ate at 8 months old. :banghead:

 

DD's teachers got a real taste of her mood swings on Tuesday, which was really bad in some ways and really awesome in others. I think now they realize the wide range of emotions the word 'bipolar' can encompass...

[amo_mea_filiis.]

My "favorite" comment is how my son "looks normal" to other people. People who have *1* perfectly typical child, or people who have no kids!

 

Last year his teacher's most used comment was how well ds was functioning. Sorry, I want more than him being able to hold it together.

 

Even our behavior therapists made some dumb comments.

[Guest]

If you only did this or that, they'd be fine. She speaks, so she must not have special needs. She doesn't look like she has a syndrome.

 

So, I'm either overprotective, neglectful, too involved, not involved enough, overreacting, negative, etc.

 

She was recently diagnosed having a genetic disorder that causes cognitive disability.

 

Only all the time.

[Mom22ns]

So, I'm either overprotective, neglectful, too involved, not involved enough, overreacting

 

This.

 

He looks normal, if I would do something different or be a different parent, and so on and so on.

 

Eventually you come to understand who you are, who your child is, stop blaming and learn to let all the hurtful words go.

[Leeanne]

If you only did this or that, they'd be fine. She speaks, so she must not have special needs. She doesn't look like she has a syndrome.

 

So, I'm either overprotective, neglectful, too involved, not involved enough, overreacting, negative, etc.

 

She was recently diagnosed having a genetic disorder that causes cognitive disability.

 

First, I'm sorry you are dealing with this. I felt the same way when our ds was younger. Even with a diagnosis in hand (PDD-NOS), my extended family thought I was overreacting in trying to help him. The predominate thought was that he would grow out of his problems - "He's a sweet kid, just leave him alone. Don't LABEL him." Now he is 16 years old and the reactions are different. His deep voice doesn't match the 10-year-old boy inside of him. He is still trying to fit his man-sized body on his Spiderman toddler couch to watch cartoons.:001_huh: Yep, they get it now.

[Renee in NC]

Yes. As if you can see a language disorder. Or the ever present, "Your 2yo doesn't talk because everyone else talks for him." Well, yes, I would buy that if I didn't have 3 older boys with some form of language processing issue!:001_huh: We'll stick with as much speech therapy as we can get.

 

Or, "He's just being a boy." Well, yes, maybe so, but we spent a very LONG unmedicated day yesterday with the 10yo and now I remember WHY we went with meds.:lol: At least he was bouncing off the walls and not raging, but he gets everyone else riled up, too.:tongue_smilie:

 

And, of course, it must be mama's fault. Isn't it funny how things are always the mother's fault?:confused::glare: As if Dad doesn't exist in their lives. Not that I believe that parents cause disabilities, but if you are going down that road, at least spread the blame a little, ya know?;)

[dsmith]

All of the time!!!

 

My sister has a habit lately of asking me the stupidest questions about ds. She thinks she is acting innocent and just trying to "understand" him, but they are like little digs at me and my parenting, as if his Aspergers would go away if I just did something else. My husband thought I was exaggerating, until he heard a few of her innocent questions himself.

[Dobela]

Absolutely. It makes me crazy sometimes. Recently dd has begun wearing braces that can be seen above her shoes and I have had people compliment me for taking care of her when she was acting terribly. When she isn't wearing her braces I get ugly looks when she is misbehaving.

[Joyofsixreboot]

I've given up explaining. The family just considers it " psychiatric gobbeldygook."

[Mom-ninja.]

Yes. Which is why I come here. My own DH asked if my son's issues were caused by my "parenting method." :glare: Yeah, that didn't end well.

Edited August 12, 2011 by Kleine Hexe

[peacefully]

.

[Hwin]

Yes and no... I still don't have the confidence to say that I know what's best for him, so maybe other people are right if they think my parenting is all wrong. :tongue_smilie:

[ClassicMom]

Just chiming in to say, "me too." I've given up trying to explain to others IRL.

:iagree:

[Crimson Wife]

Yes. As if you can see a language disorder. Or the ever present, "Your 2yo doesn't talk because everyone else talks for him." Well, yes, I would buy that if I didn't have 3 older boys with some form of language processing issue!:001_huh: We'll stick with as much speech therapy as we can get.

 

Oh, I hear you on this! Usually goes hand-in-hand with criticism that because my oldest was an early talker and my younger two were/are late talkers, I must be neglecting them language-wise because I'm spending too much time with oldest DD. :glare: On the contrary, I spend much more time & effort working on language activities with my late talkers than I ever did with my early talker because she didn't need it! She picked up vocabulary simply by osmosis- I didn't have to sit there and painstakingly teach it using PECS like I do with her younger sister.

[pdalley]

Oh yeah, especially with three. If one more person asks me why we had more kids when they're all autistic I'm going to say something ugly. (Truth is that our oldest wasn't diagnosed til the youngest was born and we'd already taken permanent birth control measures because we were done.)

 

Usually I just roll my eyes and go on.

[MerryAtHope]

Sometimes, some people just aren't going to "get" a thing unless they have experienced it first hand.

 

The older I get, the more things in life I think this applies to (and the more I try to remember it when someone else is going through something I haven't experienced). :grouphug:

[Carrie12345]

With my AS kid, I get a lot of "Oh, that's normal at this age."

 

Yes, he is going through a lot of standard experiences/issues/changes right now. That doesn't necessarily translate into "normal" processing or "normal" reactions, and it certainly doesn't always mean it's "good". But, 99% of the time, I'm left just nodding in agreement, because I can't find the words (or time, or patience, or interest) to explain the intricacies.

 

And then there are the times when he DOES do things that are so completely "normal", if mundane, and it's a HUGE victory in my heart, and I don't have many people to share in that celebration b/c they can't conceive of what a big deal it is.

[Guest Sevenup]

I deal with this a lot too. It is helpful to take all the comments with a grain of salt- they don't understand the difficulties because they don't see it day in and day out. :tongue_smilie:

[swellmomma]

If you only did this or that, they'd be fine. She speaks, so she must not have special needs. She doesn't look like she has a syndrome.

 

So, I'm either overprotective, neglectful, too involved, not involved enough, overreacting, negative, etc.

 

She was recently diagnosed having a genetic disorder that causes cognitive disability.

 

YES! especially the bolded part. Because my kids "look" normal it must all be in my head, or due to bad parenting. It is worse when people who see my kids for 1-2 hours once in a while see them behave and assume I am lieing or exaggerating because the kids were "perfect" in that time frame therefore I could not possibly have to deal with anything else. My kids have good days/moments just like everyone else. They do not have to be terrible all the time to prove they have SN

[Beauty From Ashes]

I know, for us, a lot of the comments are tied to homeschooling.

 

1) They think we homeschool BECAUSE our kids have special needs - no, we wanted to homeschool before we even had kids. We discussed it before we even got married.

 

2) They think we are just homeschooling to get them up to speed with their peers then we will put them in "real" school. Once we fix their special needs, they can go because we caught them up.

[swellmomma]

I know, for us, a lot of the comments are tied to homeschooling.

 

1) They think we homeschool BECAUSE our kids have special needs - no, we wanted to homeschool before we even had kids. We discussed it before we even got married.

 

2) They think we are just homeschooling to get them up to speed with their peers then we will put them in "real" school. Once we fix their special needs, they can go because we caught them up.

 

 

I have had the opposite. I have have many people, strangers, dr's etc who seem to think my kids have SN because we homeschool. That if I put them in ps they would be normal and teh sn would simply vanish.

[butterfly113]

With my AS kid, I get a lot of "Oh, that's normal at this age."

 

Yes, he is going through a lot of standard experiences/issues/changes right now. That doesn't necessarily translate into "normal" processing or "normal" reactions, and it certainly doesn't always mean it's "good". But, 99% of the time, I'm left just nodding in agreement, because I can't find the words (or time, or patience, or interest) to explain the intricacies.

 

And then there are the times when he DOES do things that are so completely "normal", if mundane, and it's a HUGE victory in my heart, and I don't have many people to share in that celebration b/c they can't conceive of what a big deal it is.

 

:iagree:

 

Couldn't have said it any better myself! :lol:

[amo_mea_filiis.]

"Well, he doesn't look deformed, or anything" was the most recent park comment.

 

"He looks normal to me" was the recent comment by a (childless) children and youth worker.

 

Same CY worker commented that at least he didn't have anything "severe or crazy" after neuro said cerebral palsy. Because having CP confirmed was just a dream come true for me. :glare:

[amo_mea_filiis.]

With my AS kid, I get a lot of "Oh, that's normal at this age."

 

 

 

During ds's preschool IEP meetings, this was a constant comment, and I HATED it!!!

 

But then he goes to kindy and loses Fun Friday for telling a kid he's mad at "you're not my friend anymore!" It was the most age appropriate and normal thing he had ever done, and gets in trouble for it!

[AmyinMD]

I have had the opposite. I have have many people, strangers, dr's etc who seem to think my kids have SN because we homeschool. That if I put them in ps they would be normal and teh sn would simply vanish.

 

 

This is more along the lines of what we've heard. People act like the problems would magically disappear if they were in school. When I mentioned to mil that we did not have the funds to fly any of the children to visit her this fall because we had so many therapy costs she said the school should be able to provide that kind of thing. Never mind that the child who we are spending the most on therapy is enrolled in the PS. :confused: