People I didn't expect to put my kid into a 1-dimensional DISABLED category

[Anonymous]

Does anyone else encounter these people? I expect some people who are not familiar with various disabilities, but what surprises me is the well-meaning people with a brother/cousin/daughter/uncle with autism who think they are experts on my kid (who they don't know) and have sage advice to share. They are well-meaning, but seem to be locked in 1-size fits all and they are very eager to give unsolicited advice. I posted once about a mom of a kid in my child's regular classroom who had an autistic brother with a borderline IQ and she proceeded to give me advice about anything from SSI to the alternate diploma track. I was polite and felt it would be rude and inappropriate for me to inform her my child does well in school, has a high IQ, WNL behavior and as of now we don't think this is a path we need to explore. Instead.."thanks for sharing" because she meant well.

Another person (in the ST waiting room) with an older daughter with autism tried to sell me on self-contained classrooms being like free private school and I should look into it. My kid was in session. Her only interactions with my kid was watching my child read a book quietly or chat with me. Not one expert has recommended self-contained. I gave another version of the old "thanks for sharing" and left it at that.

Can anyone relate?

[Anonymous]

Yeah, unfortunately I can. It hurts because it's clear they don't see my kid as an individual human being at all. My kid recently had a big accomplishment. It was a big deal but also totally within his capabilities so not a surprise. I had 3 different people tell me how amazing it was to see how far "kids like this" can come. WTF people.

[Anonymous]

I know. If I mention to someone that I have a child with autism, they assume low-functioning. He's in a mainstream classroom, in AAP, and has friends. Autism is a broad spectrum.

[Anonymous]

We get it from both ends. I have one child who is on the mild end of ASD and one child who is at the other end for LDs. For the child with ASD it is either denial of the diagnosis and assumption that he is far worse than he is- until they have spent a certain amount of time with him in a variety of venues. For the child with LDs, people generally think his success means that his disability is mild and they question his need for his accommodations- when in fact it is from a ton of work on his part as well as his accommodations.

I am not sure that there is anything we can do about it. People make assumptions based on their experiences and the likelihood of most people getting enough of a variety of experiences with children with a specific SN is low.

[Anonymous]

The best thing to do is just put up a wall not let things other people say bother you. I know this is harsh...

[Anonymous]

Why are you telling people your child's diagnosis?

You are oversharing with strangers and wondering why you are getting responses you are uncomfortable with?

Seems simple to keep it to yourself.

[Anonymous]

Anonymous wrote:I know. If I mention to someone that I have a child with autism, they assume low-functioning. He's in a mainstream classroom, in AAP, and has friends. Autism is a broad spectrum.

+1. I stopped telling people that my kid has ASD/ADHD. No one ever thinks he has any diagnosis or disability anyway and he's at the age where he should have his privacy. He is very talented, excels in school fully mainstreamed and has friends.

People have a very skewed view of how autism presents and it's not my son's or my job to educate them.

[Anonymous]

Anonymous wrote:Why are you telling people your child's diagnosis?

You are oversharing with strangers and wondering why you are getting responses you are uncomfortable with?

Seems simple to keep it to yourself.

OP here. I don't always share. When DC was younger, the happy flapping gave it away. These days occasionally someone recognizes the "autism way of speaking" or a typical autism obsession. That said, I do share the diagnosis when I feel comfortable, but those are usually people who see my child as a person first, rather than a walking, talking AUTISM diagnosis with nothing else except AUTISM. I find it surprising because their loved ones with autism are much more than their autism. They are people with passions and dislikes and all sorts of dimensions.

[Anonymous]

We shouldn't get riled up, OP.

These missed exchanges are part of sharing and helping others. Don't forget all the helpful and spot-on advice we have all received, although they are of course less frequent than all the ones that miss the mark!

My son is gifted and learning disabled with severe ADHD. Rather like your son, having a wide variation in skill set is something most people, even supposed experts, can't quite grasp, and we should educate them and not get offended when they don't understand.

My struggles have been two-fold:

1. Finding appropriate education for him. I finally found something quite unadvertised within the MCPS system: a program for GT/LD students! It's not perfect but it's so much better than what he had before.

2. What's really hurtful are not strangers' comments, but ones made by close friends or close family members who really should know better. My husband took the entire primary school years to acknowledge that our son needed a neuropsychological eval and medical treatment. My best friend's husband told us many times to our face that ADHD was overdiagnosed and that boys will be boys and that my son was perfectly normal (there is NOTHING typical about him, and he doesn't even have the typical hyperactivity associated with ADHD in the minds of the general population). Ignorant and rude comments were made by my family, and my husband's family.

So, yes. It's humbling to be the caregiver for someone who is outside of the expected norm, whether it's a child or an adult. Takes a lot out of you. We all need to stay strong and purposeful.

[Anonymous]

Anonymous wrote:I know. If I mention to someone that I have a child with autism, they assume low-functioning. He's in a mainstream classroom, in AAP, and has friends. Autism is a broad spectrum.

THIS. My child was at a level 4 school in AAP. I had a mother who's oldest child has autism look all confused at Open House. She informed me her NT son was in AAP so this must be the wrong classroom. I told her it was AAP and she looked at my kid and then looked confused. She actually let a big ol "HE'S in AAP?!!!" It's like she had just lumped him into some big DISABLED pile. If you live with a person with a disability, be it a child, a sibling or whatever, I would assume you know that person is so much more than the disability and people with disabilities can have strengths.

[Anonymous]

What PP said mostly. OP, I think you're overreacting and being too sensitive. These people are trying to help by sharing their experiences. It's generous and well-meaning. Maybe only a little or none of their advice will apply to your child but it still gives you perspective on what other people may be going through with their own children.

My family doesn't really understand ADHD and thinks it means DC will not be able to have a "real" job. They don't understand that DC is GT/LD with a high IQ even though school is difficult there are probably a lot of wonderful jobs that would be a great fit in the future.

[Anonymous]

I think you are being a little too sensitive and critical of people offering you well-meant advice.

We all want our kids to be considered as typical as possible and so it rankles when you feel like people are assuming your kid is less typical than you think he is.

You never know what the future holds, one day down the line you might need to qualify for SSI or consider a self contained class and the well meant advice might come in handy.

[Anonymous]

Anonymous wrote:
We shouldn't get riled up, OP.

These missed exchanges are part of sharing and helping others. Don't forget all the helpful and spot-on advice we have all received, although they are of course less frequent than all the ones that miss the mark!

My son is gifted and learning disabled with severe ADHD. Rather like your son, having a wide variation in skill set is something most people, even supposed experts, can't quite grasp, and we should educate them and not get offended when they don't understand.

My struggles have been two-fold:

1. Finding appropriate education for him. I finally found something quite unadvertised within the MCPS system: a program for GT/LD students! It's not perfect but it's so much better than what he had before.

2. What's really hurtful are not strangers' comments, but ones made by close friends or close family members who really should know better. My husband took the entire primary school years to acknowledge that our son needed a neuropsychological eval and medical treatment. My best friend's husband told us many times to our face that ADHD was overdiagnosed and that boys will be boys and that my son was perfectly normal (there is NOTHING typical about him, and he doesn't even have the typical hyperactivity associated with ADHD in the minds of the general population). Ignorant and rude comments were made by my family, and my husband's family.

So, yes. It's humbling to be the caregiver for someone who is outside of the expected norm, whether it's a child or an adult. Takes a lot out of you. We all need to stay strong and purposeful.

Yes, it is really hard when those close to us are hurtful.

I think I can cast a broad stroke or brush or whatever the saying is and say as a basic rule strangers, friends and family should not offer unsolicited advice. If someone ASKS you for it, by all means give it generously. Trying to be an expert on another person's child or even a diagnostician of the disability is rarely if ever a good idea either. I think another generalization I can make is always see the person before the disability. It's a lot more innocuous to see a kids soccer team shirt and say "oh, 2 of my kids play soccer too" or "my kid collects baseball cards too" than it is to say "oh I noticed your kid flapping. I have an autistic child too" and then what often follows is well meaning information that isn't anyone's place to share without a request.

[Anonymous]

Anonymous wrote:I think you are being a little too sensitive and critical of people offering you well-meant advice.

We all want our kids to be considered as typical as possible and so it rankles when you feel like people are assuming your kid is less typical than you think he is.

You never know what the future holds, one day down the line you might need to qualify for SSI or consider a self contained class and the well meant advice might come in handy.

This sounds like something my MIL would say. It would then be followed by a complaint over the fact her friends never want to get together and her kids take a break whenever she gets over-zealous sharing her advice and her armchair diagnoses. She says everyone is too sensitive and then complains that her friends avoid her and my sister in law cut her off. If you aren't an expert in the field, no matter how well-meaning-there is no need to get into another person's business without their request.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I know. If I mention to someone that I have a child with autism, they assume low-functioning. He's in a mainstream classroom, in AAP, and has friends. Autism is a broad spectrum.

THIS. My child was at a level 4 school in AAP. I had a mother who's oldest child has autism look all confused at Open House. She informed me her NT son was in AAP so this must be the wrong classroom. I told her it was AAP and she looked at my kid and then looked confused. She actually let a big ol "HE'S in AAP?!!!" It's like she had just lumped him into some big DISABLED pile. If you live with a person with a disability, be it a child, a sibling or whatever, I would assume you know that person is so much more than the disability and people with disabilities can have strengths.

I had a similar experience at a park when my daughter with Down syndrome was 15 months and scooting around on a Fly Bike. A mom at the park with a very NT looking daughter just flipped out because she told me her daughter wasn't doing that yet. Completely ridiculous reaction... she keep shouting "SHE can do that? SHE can do that?" My husband and I moved away from her because she was making a scene.

Just because my kid is disabled doesn't mean she isn't going to be GOOD at some things and maybe even better. Anyhow, my daughter starting reading at 3 1/2 and has just taken off from there. I'm sure that mom would be ripping her hair out if she knew. You can't know what a disabled child is capable of not capable of until you give them a chance.

But as my Asian-American friend told me, her kids are half-white and NT. She said sometimes people are shocked that they can speak English! She said she gets unbelievably ignorant comments all the time.

And for the parents of NT kids who are smug, they have no idea if their kids will become drug addicts, lazy moochers or criminals. It unfortunately happens. I don't wish it on anyone but with kids you just never know what will happen. So I'm thankful for what I have. I plan for the future but I appreciate the here and now more than I used to do.