support / encouragement: if your SN DC appears typical .. - Page 2

[Momma Aimee]

Originally Posted by NightOwlwithowlet

This is my theory about why people want to blame the parents for "bad behavior' instead of admitting or acknowledging it could be special needs. If it is bad parenting, then it can't happen to them. To think that life it is somewhat random and sn to could happen to anyone, takes control away from them. It could happen to their kid too. I used to think like that too. Now, I realize we are all one car accident, TBI, or stroke away from being disabled.

Personally, I'm sick of people diagnosing my kid. Seriously, if after four or five evals and a lot head scratching by the experts, why do you think you can know based on an article you read? Last year my uncle's girlfriend decided my son was bipolar (a diagnosis that has never even been considered) because he jumping around outside pretending to sword fight with Darth Vader. She said something to DH. He said, "Oh, you went back to medical school when did you graduate?" Because we all know 7 year old boys never pretend to fight bad guys when they are outside and bored.

LOL Heck I SEND mine outside to do battle with "bad people" -- that is some of his best "age" behavior!!!

"I'm sorry that the idea of a kid who can't be disciplined into being your ideal by your standards makes you uncomfortable, but he is OUR blessing and we choose to see the good in him. If you can't see it this way I am sorry for you." or something of the like.

I am blod enough, I usally say "he is doing his best, this is his best" or something ...

HennyPenny -- you are so right. I don't talk to many about it -- it is toooooooo long and drawn out adn there are no easy answers it is not a birth defect, it was not caused by the forcept birth, it is not an ASD and so on ... i have no "short form" and the whole long story is tooooo much.

thanks everyone -- i am just feeling so worn out. and we are vacation and having a great time, sad huh?

[Catubodua]

Originally Posted by HennyPenny

Catubodua -- thanks for sharing I'm glad it worked out well for you and fo them. it seems like you did exactly the right understanding thing. I often find the general public more understanding than friends and family. Funny how that works!

I think the phrase "she has some challanges" was a good way to put it. the hard part is you never know how someone will respond to a statemnt like that. But it seem you responded very well

thanks! and, i know what you mean about not knowing how folks will react. i have a cousin that has cerebal palsy and other challenges and i've seen it go either way. people can be much more understanding but i've also seen folks literally run away from her (well, ok, walk briskly!) once they hear she's got special needs as if the fact that she has special needs allows them to ignore her and be rude.

[Fay]

My 9 year old appears "normal" to most people...at first glance. Even parents of other autistic children comment that "he doesn't act autistic" because he's so affectionate and cheerful most of the time. But he still fits all of the diagnostic criteria, and his behavior is...unusual. I solved the problem of worrying about what other people may think by getting some day-glo pink fabric paint and writing on my black purse "ASK ME ABOUT AUTISM" in large letters. Most people look away and steer clear of us (which is OK when my kid is skipping and flopping around the mall or wherever we are), but I've also had some great conversations with complete strangers. I have a t-shirt that says the same thing in large rainbow letters, in case people don't see my purse, LOL. BTW, I sit in the front row at church with my hyperactive kids. My pastor & deacon tell me often how much they enjoy seeing my children at church (sometimes the deacon struggles to suppress his laughter during a long prayer, but the pastor has seen it all, so nothing phases him), no matter what the behavior of the day is. If you come to church with us, I guarantee you'll be entertained.

[BetsyNY]

We struggle with this too.

With my ASD son, he's petite for his age (10% percentile for height), plus he's a twin--so it's common for people to assume that his twin brother is actually his older brother. His autistic behaviors are also harder to spot, plus because he's so small a lot of it seems within the range of normal.

None of that would be a problem except that he goes to a special school for ASD kids, and he doesn't seem "autistic enough" to be there. But other special ed programs didn't understand him at all, and because he's good natured he just got swept along in the rhythm of his other preschool class.

My other son has...I don't know what he has. Probably SPD at the very least. Maybe ADHD, too; definitely anxiety. Transitions of all kinds cause huge emotional displays, flailing on the ground, weird panting fits (?!)--plus his diet is extremely limited. There was a public indoor playground run by our city, and there were vending machines. I'd buy him cookies from the vending machines just to get him to eat something, and I know the other mothers probably thought I was an awful parent. That part sucks. It's hard enough to live this life, but when you feel judged....

[Momma Aimee]

Originally Posted by BetsyNY

We struggle with this too.

With my ASD son, he's petite for his age (10% percentile for height), plus he's a twin--so it's common for people to assume that his twin brother is actually his older brother. His autistic behaviors are also harder to spot, plus because he's so small a lot of it seems within the range of normal.

None of that would be a problem except that he goes to a special school for ASD kids, and he doesn't seem "autistic enough" to be there. But other special ed programs didn't understand him at all, and because he's good natured he just got swept along in the rhythm of his other preschool class.

My other son has...I don't know what he has. Probably SPD at the very least. Maybe ADHD, too; definitely anxiety. Transitions of all kinds cause huge emotional displays, flailing on the ground, weird panting fits (?!)--plus his diet is extremely limited. There was a public indoor playground run by our city, and there were vending machines. I'd buy him cookies from the vending machines just to get him to eat something, and I know the other mothers probably thought I was an awful parent. That part sucks. It's hard enough to live this life, but when you feel judged....

ohhh yes teh FOOD issue. Theo is VERY self-limiting VERY. so there are a ton of times he won't eat, and i don't fight him, heck i don't even try if it is something i know he won't eat -- and i get a ton of looks there ...and more of the "you have to be the parent" and "of course he is only going to eat X Y and Z if you LET him ..." (that from a dietian at a special needs assessment -- she was worthless I almost said "gee lady i just like my son eating like a cat, all dry crunchy food" but he was asleep in my lap at the time after a 14 hours day).

[*LoveBugMama*]

*waves her hand and joins the club*

OP, I`m so sorry people have been acting like jerks.


I have a unique child, too. (A friend of mine came up with that term, instead of special needs. Unique needs, cause I sometimes feel that calling him special needs is wrong because of: He has no diagnosis, and might never get one. He was evaluated, but everything was done very, very poorly and we didn`t feel understood AT ALL. So they couldn`t/wouldn`t give him a diagnosis, but at the same time the therapists numerous times said "there is something about him". And we have papers they have written, with the words anxiety all over the place...Anyway. He has struggled with sensorystuff his whole life (better now, but not gone), anxiety and other stuff, too. ( He has quite a few traits that could look like Aspergers, but I don`t think he HAS Aspergers.) The anxiety is constant, but the degree varies a lot, from mild to extreme.(Wanted to die at age 6, because the anxiety was soo bad at the time.) When in school everything gets waaay worse.

But he looks completely normal. And he acts pretty normal, unless you look very closely. If you do, you might see that he sometimes/often has trouble interacting, that he enjoys football, but not playing WITH other children, that he gets really, really anxious sometimes etc, that he takes things very literally, that he has trouble understanding the difference between kids teasing for fun and kids bullying/being mean etc.

It`s hard. It feels like no one understands. We have been accused of making him like this because we protect him too much, people think we are making up the stuff he is afraid of etc. (He does NOT show his anxiety to others. It has taken literally YEARS to make him comfortable to show it to his closest family, like my mother and an aunt of his.)

[Linda on the move]

Originally Posted by *LoveBugMama*

He has no diagnosis, and might never get one. He was evaluated, but everything was done very, very poorly and we didn`t feel understood AT ALL. So they couldn`t/wouldn`t give him a diagnosis, but at the same time the therapists numerous times said "there is something about him". And we have papers they have written, with the words anxiety

How old is he? There are some things that can't be dx'ed until kids get older. Eventually, he might end up with a dx like "social anxiety disorder." My DD fits all the criteria for it but her specialists have decided to skip it because she has so many other labels and it wouldn't get her anything else, but it sounds a lot like your son. It's more the kind of dx that a child working with a counselor/psychologist (like in week to week sessions) gets rather than one that comes through an evalutation.

I'm sorry that you and your son are going through this.

[*LoveBugMama*]

Originally Posted by Linda on the move

How old is he? There are some things that can't be dx'ed until kids get older. Eventually, he might end up with a dx like "social anxiety disorder." My DD fits all the criteria for it but her specialists have decided to skip it because she has so many other labels and it wouldn't get her anything else, but it sounds a lot like your son. It's more the kind of dx that a child working with a counselor/psychologist (like in week to week sessions) gets rather than one that comes through an evalutation.

I'm sorry that you and your son are going through this.

He will be 9 in three weeks.
He has been like this for as long as I can remember, but startting school REALLY made it worse. He should be in third grade now, but we are homeschooling him the rest of this schoolyear. (Took him out in december. He just wasn`t functioning at school. Refused to go into ANY classes.) But he will start again in the fall, to begin 4th grade. I`m dreading it already, but I have no choice. My own health just can`t cope with homeschooling fulltime. It is exhausting. Here in Norway we have to do VERY much work to prove that we are teaching him what he should learn, and that on top of a child who just HATES everything that looks like school/schoolwork/sitting/writing etc. It`s just too much work for me. Sadly. (We will try to get the county to accept parttime schooling and parttime homeschooling. Has worked before. 2 days home, 3 days school in a week.)

Sorry for hijacking your thread, OP!!

:

[Momma Aimee]

Originally Posted by *LoveBugMama*

He will be 9 in three weeks.
He has been like this for as long as I can remember, but startting school REALLY made it worse. He should be in third grade now, but we are homeschooling him the rest of this schoolyear. (Took him out in december. He just wasn`t functioning at school. Refused to go into ANY classes.) But he will start again in the fall, to begin 4th grade. I`m dreading it already, but I have no choice. My own health just can`t cope with homeschooling fulltime. It is exhausting. Here in Norway we have to do VERY much work to prove that we are teaching him what he should learn, and that on top of a child who just HATES everything that looks like school/schoolwork/sitting/writing etc. It`s just too much work for me. Sadly. (We will try to get the county to accept parttime schooling and parttime homeschooling. Has worked before. 2 days home, 3 days school in a week.)

Sorry for hijacking your thread, OP!!

:

no problem -- we are here to support each other --

[celestialdreamer]

: I guess we fit in here too. I don't post much in the SN forum anymore, but I've felt this way with both my almost 6yo and my 4yo.

My almost 6yo likely has Asperger's and severe sensory issues (after 3 years of therapy we decided not to pursue a written Dx). She is very sweet and smiles a lot so pretty much most of the time I get told that she is TOTALLY fine by anyone I talk to. Even close friends have tried to belittle our struggles and compare their NT children to her, but honestly I don't really think they get it at all. She is turning 6 next week, yet can still throw a tantrum like a 2yo. Typically she shuts down in social situations, so people think she is just shy. Honestly I don't think even our close friends really know what she is like 95% of the time. I've just given up on discussing it with most anyone.

My 4yo has Nephrotic Syndrome and has been taking high dose steroids since last fall to suppress his immune system. The steroids have caused intense behavioral issues and I'm sure to many people it just looks like we don't parent him well.

[Shellie]

My 5yo has special medical needs (Crohn's that in the past has been severe) and has a brain injury from a stroke she had (at age 2). Especially now that her Crohn's has been in remission for quite some time, we have issues with people not understanding her...issues. She is in the 75th %-ile for height and weight (which is a miracle for a small child with Crohn's, really) and looks/feels great most of the time. She tires easily/quickly, has verbal apraxia and some speech impediments as well as some sensory issues and that sort of thing.

She also has a short fuse emotionally...she'll have a two-year old style tantrum over something relatively mild. Like recently the neighbor girl's mom came over to get her kids to come home for dinner and my dd, who is as big as the 7 year old neighbor girl, threw herself onto the sidewalk and started grabbing frantically at the ankles of the poor girl who was trying to leave....and dd was shrieking her name at the top of her lungs. Um....awkward, much? LOL The mom looked at me like I am either the worst parent in the world or the mom of a very wierd child...I tried to briefly explain the stroke and emotional issues (we don't even really know the extent and won't for years) and she looked at me like I had two heads!

I also find it's hard to be me....I have PTSD from the things we've been through (coma, long hospital stays, despair, etc.) and no one really can see by looking at dd why I would be having such a hard time emotionally since dd obviously is doing so well. Can anyone relate to that?

[Linda on the move]

Originally Posted by Shellie

no one really can see by looking at dd why I would be having such a hard time emotionally since dd obviously is doing so well. Can anyone relate to that?

yes.

[Leatherette]

My daughter has neurodevelopmental disorder - NOS, Sensory Processing Disorder, and Anxiety issues. I am sure that people think I am a "helicopter parent" because she appears so normal and I still go with her to birthday parties and playdates and help her right at the beginning of school and the end of school. She is terrified of dogs and bugs and gets very anxious when a lot of people are moving around in random ways.

She is very intelligent and really anxious about not fitting in socially, so she works really hard to hold it together in public - it is at home that her issues really "hang out".

By the time we have gotten out the door, looking "normal", we have had tantrums about bugs, dressing, gotten special socks and underwear on that doesn't send her over the edge, dealt with eating issues (texture), meltdown if something has spilled (afraid I will be mad, even though I have never gotten mad about it), lotions for eczema, inhalers for asthma, "brushing" for sensory input..........

[Momma Aimee]

I am shamed to say this

I wish Theo could / would hold it together in public and all his issues were at home.



To be honest at home we are faily OK ....most of the time, or st least more of the time

in public we get samll "ok" times, but all public time is a massive struggle just to function

[*LoveBugMama*]

Originally Posted by Leatherette

My daughter has neurodevelopmental disorder - NOS, Sensory Processing Disorder, and Anxiety issues. I am sure that people think I am a "helicopter parent" because she appears so normal and I still go with her to birthday parties and playdates and help her right at the beginning of school and the end of school. She is terrified of dogs and bugs and gets very anxious when a lot of people are moving around in random ways.

She is very intelligent and really anxious about not fitting in socially, so she works really hard to hold it together in public - it is at home that her issues really "hang out".

By the time we have gotten out the door, looking "normal", we have had tantrums about bugs, dressing, gotten special socks and underwear on that doesn't send her over the edge, dealt with eating issues (texture), meltdown if something has spilled (afraid I will be mad, even though I have never gotten mad about it), lotions for eczema, inhalers for asthma, "brushing" for sensory input..........

OMG, I soooo can relate to this!
When LoveBug was in school, "everyone" seemed to think he wasn`t as troubled as we said he was. Why? Cause when we FINALLY got the poor kid to school, we had dealt with an hysterically, sobbing, crying kid for several hours at home and in the car to school. When he eventually managed to go into a classroom, he had been sitting in the school library with me for an hour, crying so much he got dizzy and had trouble breathing. Holding it all together, trying to be calm for him, tryong to ALWAYS stay positive etc. actually made me sick. It was/is sooo exhausting.


Big hugs to everyone!!!

(Ya know, just being here, talking with you ladies makes me feel better. It`s so good to be understood. In my real life people just don`t understand. "But he looks sooo fine??" "He has no diagnosis, that means he is just like everyone else." )

[*LoveBugMama*]

Originally Posted by Momma Aimee

I am shamed to say this

I wish Theo could / would hold it together in public and all his issues were at home.



To be honest at home we are faily OK ....most of the time, or st least more of the time

in public we get samll "ok" times, but all public time is a massive struggle just to function

I can totally understand this, too. I think it`s hard no matter what. No matter WHERE your kid has most issues, life with a unique/special needs child is hard.

[Momma Aimee]

Originally Posted by *LoveBugMama*

OMG, I soooo can relate to this!
When LoveBug was in school, "everyone" seemed to think he wasn`t as troubled as we said he was. Why? Cause when we FINALLY got the poor kid to school, we had dealt with an hysterically, sobbing, crying kid for several hours at home and in the car to school. When he eventually managed to go into a classroom, he had been sitting in the school library with me for an hour, crying so much he got dizzy and had trouble breathing. Holding it all together, trying to be calm for him, tryong to ALWAYS stay positive etc. actually made me sick. It was/is sooo exhausting.

Big hugs to everyone!!!

(Ya know, just being here, talking with you ladies makes me feel better. It`s so good to be understood. In my real life people just don`t understand. "But he looks sooo fine??" "He has no diagnosis, that means he is just like everyone else." )

[Peony]

I've got one of these kiddos. DD1 is 7, she is dyslexic, SPD, and struggles with anxiety. Right now the anxiety is tolerable, she is functioning, and sleeping mostly, but when it is bad, it is BAD. At school, she is an entirely different child, everyone adores her. She goes to a tiny, very crunchy school, if it was any other type of school, could would not fare well. The teacher is way too awesome to ever say anything, but I wouldn't doubt it if half the time she wonders what the heck I am talking about when I bring her in late because it was a rough night. Her language therapist is keen enough to pick up on differences. In her monthly reports I get, she will have notes where she writes for a certain day that she suspected M didn't sleep the night before, and she is always right.

Back when she was 5, she was the 5y that I was carrying out of a place in a full tantrum. After intensive OT, the SPD is under control, not to say she doesn't still flip out, but it is no longer ruling our life like it did.

So many people don't get it though. DD1 needs constant physical action. She does gymnastics, dance, snowboards all winter long, swim team in the summer. It is either that or the child bounces off the walls and drives me bonkers. Apparently I am one of those moms that overschedules their child, um no, she is scheduled so that the rest of us can attempt to live with her.

[justmama]

The thing I don't get is why it is okay that my youngest is medicated for asthma and special accomodations are made for her but my oldest should not be medicated or given special accomodations for her ADHD and low processing speed. They both LOOK totally normal. But one has a medical problem that could be life-threatening and one has a neurological problem that causes behavioral problems and learning problems. And yet, there are so many people that don't believe that ADHD even exists, let alone should be managed by medication or behavioral modification tactics. My daughter is just "lazy" and needs discipline. Yeah, it's not an excuse. But it's at least a reason as to why we have so many behavior problems that aren't resolving after YEARS of trying.