How to deal with the comments?

AshleyDehaven

I am getting a little burnt out lately with the constant barrage of well meaning but ignorant statements that fly out of the mouths of those around me.

On eating:
"Maybe he'd like to try.." I explain that no, it's messy, mess makes him uncomfortable and we honor that.
"Well just TRY it, he's a BABY, don't give him a choice!"
"In my day if a child didn't eat what i made, the child didn't eat"
"You're really going to let him have that for dinner AGAIN??"
"Here, let me try, I can make him eat."

On ASD:
"Does his therapist think what i do? That he's just BORDERLINE, not (and i cringe typing this) completely retarded" <<yes that really happened, and yes, i blew my lid.
"We have been talking (my aunts and grandmother) and we think the only thing wrong with him is that he hasn't had enough socialization." <<until recently we lived in TX 2500 miles from home.
"Well he's not going to be any Einstein but i certainly don't think he's stupid."
"Doctors are always calling it Autism, when really some kids are just brats."

On sensory, and bonding issues:
"You just need to force the issue, he'll never be normal if you don't force him.."
"Stop spoiling him"
"You're making a bigger deal out of this than it needs to be, he's a kid, he'll get over it."



I get it, they don't understand, but seriously, how do you cope? Because i almost told a family member to shove it today..

ToastieSimons

Unfortunately, you need to draw the line in the sand.

I'm of the camp "if you have nothing nice to say, then don't say anything "except it morphs into "if you don't have anything supportive to say, then don't say anything".

He's your child.  You know him 100% and you know what he needs.  My IL's are not supportive of our parenting and medical choices for our kids. So we told them, we're not going to discuss it then.  if you choose to bring it up we're going to choose to leave or distance ourselves from you, end of story.

It's gotten better.  Occasionally my IL's will make a dig about how if we just took the kids to "such and such" they'd be fine, etc.

Although, I have it a bit easier.  My boys have genetic disorders so there is no denying DNA.

malcivar

This one:

"Here, let me try, I can make him eat."

Uggghhhh!  Thankfully DS2 proved that wrong by throwing up on the person who made this comment.  Not great but I'm not going to lie, I had to suppress a smug smile.  

So sorry.  Some people mean well but it doesn't come out right.  Some people just need to not talk.  Like ever.  

{{hugs}}

Princess_Lily

I have family members who talk like this - and its so aggravating. No child is safe from the criticism of the elders in our family.

What makes it worse, the kids who are talked about openly, hear it. Or at family gatherings where the kids aren't present are talked about. Then, when they grow up,they actually become the people who talked smack about them. Its an abusive cycle.

I keep my distance from these family members and don't explain any of DS' behaviors. The more they know, the more they talk.

AshleyDehaven

-auntie- said:

I avoid people who are aren't on team Auntie. If they love you child, are capable of re-training without too much push back and you feel up to it, you can try to educate them. Otherwise, I suggest boundaries, and if that fails, distance. This might mean you don't get the warm inclusive atmosphere you hoped for, but you don't get the senseless chatter either.

I back-burnered my relationship with my father because he was playing devil's advocate and I didn't have the emotional bandwidth to deal with the constant barage of well-meaning but idiotic nonsense. I am an only since my sister died and it put a barrier between my mother and myself but I had to make the point that I wasn't going to make myself available for his opinions. It took a couple years, but he got it.

There were a few things below I wanted to comment on. 

AshleyDehaven said:

I am getting a little burnt out lately with the constant barrage of well meaning but ignorant statements that fly out of the mouths of those around me.

Ignorant is an interesting word choice. It implies an unintentional lack of knowledge. And that is probably exactly what it is. You older relatives didn't know kids with an ASD dx growing up- those with moderate to severe presentations weren't educated in the mainstream and those who were less impaired were just weird kids.

I'd choose my companions carefully. Your parent might be worth trying to educate, a a grandmother who's unfiltered and a little judgemental isn't. Take the subject off the table, if they bring it up, give a single warning and then leave. You take care of your people and let your DH manage his.

If you do wish to attempt to bring a parent into the fold, having them come along to dev epdi and therapy appointments is a great way to get them to buy-in. I find this is especially effective if you are a younger mom who is judged somewhat for it.

On eating:
"Maybe he'd like to try.." I explain that no, it's messy, mess makes him uncomfortable and we honor that.
"Well just TRY it, he's a BABY, don't give him a choice!"
"In my day if a child didn't eat what i made, the child didn't eat"
"You're really going to let him have that for dinner AGAIN??"
"Here, let me try, I can make him eat."

It's kind of ironic you are complaining about their refusal to accept your approach to eating when there are two active threads about moms who are really struggling with eating issues. 

https://forums.thebump.com/discussion/12451055/how-long-should-i-wait#latest

https://forums.thebump.com/discussion/12451338/more-orthodontic-issues#latest

Eating is really important. The fine motor skills of self feeding translate directly into the adaptive and graphomotor skills needed to be independent in school. Preschool paint with shave cream or pudding day is going to be hard for a kid who does like messy. 

YMMV, of course, but I find DS's greatest growth was always the result of pushing him out of his comfort zone. Always. You have the gift of an early dx, if it were me, I'd address this now. It'll make your family life more fun going forward. He's probably more open to redirection than he'll be when he's older. I have friends who had to do feeding training with their son multiple times before it stuck when he was in middle school. It was a nightmare all around, but most especially because it limited their son's opportunities to socialize with family and peers.

On ASD:
"Does his therapist think what i do? That he's just BORDERLINE, not (and i cringe typing this) completely retarded" <<yes that really happened, and yes, i blew my lid.
"We have been talking (my aunts and grandmother) and we think the only thing wrong with him is that he hasn't had enough socialization." <<until recently we lived in TX 2500 miles from home.

In their defense, until very recently "retarded" was the preferred medical term meant to replace terms like moron and idiot in the lexicon which had been co-opted by the general public as insults. When they grew up, even 10 years ago, this term did not carry the emotion is does now. I see the same thing with "special". DS even used to it describe his cat when he did bone-headed things like roll off the table.

Until very recently, it was assumed that about 75% of those with an ASD dx had an IQ below 70.  

Remember, your parents and grandparents went to school before IDEA was the law of the land. They may not have had mouch exposure to kids with differences. 

Still sort of rolling my eyes at "socialization" for someone who isn't 2 yet.

"Well he's not going to be any Einstein but i certainly don't think he's stupid."

Only Einstein is Einstein. 

I get it, they don't understand, but seriously, how do you cope? Because i almost told a family member to shove it today..

I educate those who are capable of learning new ideas and I ignore the rest. This limitedmy options vis a vis babysitting and guardianship, but sometimes you have to put your sanity first.

His new IFSP focuses very heavily on feeding and his sensory issues, and his new OT will be focusing solely on the sensory/mess hating side of things, so it is a priority with me, but the person who keeps pushing this, he does not like, and since she started this behaviour, he has started to actively refuse to eat in her presence. We all live in the same house right now, my husband just got out of the Army and is between jobs, so we live in a house with my parents, and my sister, who are all a little sceptical but supportive regardless, and my grandmother. All of the eating comments are hers, so is the retarded comment. My son has stopped eating dinner on weeknights when she is home because she wouldn't quit pushing, and on weekends we have to leave to get him to eat all his meals. I guess this whole thing frustrates me because it IS something we are working on and she is alienating our efforts and making him uncomfortable. As for the R  word, i agree, i know that it's just not knowing any better, but man, it still stings. I am trying to be the big person here, and deal with all of this gracefully, but it's hard when people sit there right in front of me, and right in front of him and discuss what's "wrong" with him, and how ostensibly it's my fault for not "getting him out more". Sigh. I know it's not going to get any easier, i just hate battling the few people i have in my corner right now. We moved home to have a better support system because of DS's situation, and my own medical problems (Atypical migraine syndrome - my migraines cause seizures), so this is all frustrating and difficult to tactfully manuever.

Justinlove

What stinks for you is that you are in their home so the it is easy for everyone to fall into "parenting" roles. It is a fine line of still being seen as a child vs. being seen as a parent when you are dependent upon your own parents. Add the matriarch living there and you are most likely thought of as a child who needs help from the "adults"--both financially and with raising your child. Are either you or your DH actively seeking employment so that you can move out soon? I don't see this ending well.

AshleyDehaven

My husband is, and in the mean time is receiving unemployment, it's not enough for a rental right now, but financially we handle our own business. He is applying everywhere, so we are just waiting. For several reasons i cannot work outside of the home, but i am starting up a cloth diaper business that i hope will be able to bring in some supplementary income. One way or another, i am adamant that we be in our own place by November. Everything that happened with us coming here happened very fast. We literally had 6 weeks from the time they told him he was getting out, until we got here, and that time was spent packing, and clearing from Fort Hood. There was no time for anything else. So this situation was obviously not part of our plan, and is not something we are comfortable with. 

KL777

Oh, I'm so sorry.  My family members just got wind of some of DSs diagnoses, and my mother says

• Don't give him drugs
• Get a second and third opinion
• Drugs will change his personality
• He needs parental direction and he's only six, he'll mature and will grow out of his behavior
• He'll have breasts by the time he's a teenager (she thinks I'm giving him estrogen, I'm not)
• And then she tells my aunt to call me and she said "the schools get money every time they get a kid with ADHD
• Then my sister chimes in, "you know ADHD is not a real diagnosis."

CaptainSerious

I deal with it a lot the same way as auntie. there are a lot of people I have very little interaction with now, because of the way they reacted to my sons. Some of these were very close friends, others just acquaintances, but all of them said some pretty insensitive things that I just couldn't deal with. Sure, I could've tried to educate them, but that's exhausting and only works a small percentage of the time. Instead I focused my limited time and efforts I'm people who lifted us up, made us feel good, offered support, and wanted to learn and understand when they did not.

The people who I did try to educate where people very close to me, like my parents. They will never get it completely, and my father is convinced that by being realistic about the situation, I am always fretting about the worst case possibility. Well that's not true, I can't change his perspective, and he's welcome to think what he wants. All that matters to me, he treats my boys with love and respect and wants the best for them.

In your situation, it's really hard, because you're stuck living with them. All I would do aside from trying to find alternative living arrangements as quick as possible, is do your best to let the comments not affect you or your relationship. It must be very difficult for your grandmother to understand but this is not a behavioral matter, and that you are not indulging your son, because before autism was truly understood, these kids were completely labeled "bad kids" or kids with "bad patents." I think the first thing you have to do is accept that you're not going to change her opinion, all you can do is change how you react to it. Do your best not to let it affect your day, your positive attitude, and your time with your son. At home, I'd try to put as much space between you and them as possible whenever confronting your sons challenges, such as eating.

My brother will never really understand my silence. He refuses to accept their needs are as extensive as they are, any chooses to believe that they will "catch up" any day. He doesn't understand why we're making a long-term plans, I thinks that many of my sons' behaviors are just signs of immaturity, that would be better served by strict parenting than our indulgent acceptance. Since my brother is important to me, although we are very different, I have made up my mind to just let his comments roll off and not bother me. I know that he will never understand, and I accept that about him, and love him anyway. It's not being way I'd like it to be, but it's the way it has to be if I'm to be at peace with our relationship.

AshleyDehaven

-auntie- said:

@AshletDeHaven said:

His new IFSP focuses very heavily on feeding and his sensory issues, and his new OT will be focusing solely on the sensory/mess hating side of things, so it is a priority with me, but the person who keeps pushing this, he does not like, and since she started this behaviour, he has started to actively refuse to eat in her presence.

Great that the IFSP is addressing this. Can you feed you child before grandmother gets home? Can you have her sit in on a feeding session or doctor's appointment ? Perhaps she'd accept this reality if she heard it from a doctor or professional.

I honestly don't want her to have that much access to him at this point. I don't feel that Thoren's medical and developmental needs are something that need to be for public consumption, and unfortunately, she can't help but run her mouth, and compare him to the other's children in the family. (I.E "Well X and Y were both talking by a YEEAR, do they know why he won't talk? What is that therapist doing ANYWAYS, doesn't seem to be helping.) She just doesn't understand, and i don't have the energy to make her. So we have started feeding him away from her, and that is going much better.

 We all live in the same house right now, my husband just got out of the Army and is between jobs, so we live in a house with my parents, and my sister, who are all a little sceptical but supportive regardless, and my grandmother. All of the eating comments are hers, so is the retarded comment.

Are you all living in her home or it it your parents' house? If it's the latter, perhaps her child could go to bat for you and get her to STFU. If it's her house, you move out or suck it up.

We are all living in my parents house, a house is being built for her on the other end of the property, and very soon she will be moving into it, and we will be moving out so hopefully this will all be a moot point soon. To my father's credit, he completely blew his lid when she pulled out the R word. It didn't help her attitude about the situation of course, but she at least hasn't gone that far since.

 My son has stopped eating dinner on weeknights when she is home because she wouldn't quit pushing, and on weekends we have to leave to get him to eat all his meals. I guess this whole thing frustrates me because it IS something we are working on and she is alienating our efforts and making him uncomfortable. 

Can you feed him before she's home? 

We do either that, or feed him in a separate room and that seems to be helping a lot.

As for the R  word, i agree, i know that it's just not knowing any better, but man, it still stings.

I am trying to be the big person here, and deal with all of this gracefully, but it's hard when people sit there right in front of me, and right in front of him and discuss what's "wrong" with him, and how ostensibly it's my fault for not "getting him out more". Sigh. I know it's not going to get any easier, i just hate battling the few people i have in my corner right now. We moved home to have a better support system because of DS's situation, and my own medical problems (Atypical migraine syndrome - my migraines cause seizures), so this is all frustrating and difficult to tactfully manuever.

I imagine they're stressed to be hosting a family of 3 with a child who has special needs when  4 other adults already living in the house. I think things'll be better once you can get your own place.

I agree, this is not a situation i would have ever chosen, and to my parents credit, they are trying VERY hard. It's just difficult to accept, and i understand that. I still have very bad days and we have been working on this for 6.5 months (seems so much longer), but this is all basically brand new, and in their face from their perspective i am sure. They went from not believing me, to being tossed into the middle of our routine with doctors, therapists, EI, and evals, and that's a lot to process all at once. I guess i'm just.. Exhausted? When it was just the 3 of us, everyone in his life was either his parents, or his service providers, and we were all on the same page. So i was in the little bubble of dedication, acceptance, and understanding, and i probably got spoiled. I didn't really have to "explain" him. I'm just tired, and a bit overwhelmed. Both are things i know i need to get used to, i am just having a harder time than i normally would, coping with all of this.

AshleyDehaven

On the bright side of this whole situation, we have found a educational therapist through EI that i swear, if i could adopt her as my own and keep her forever i would. Thoren has a hard time with new people, trouble getting comfortable, and a lot of trouble bonding. She just.. She found a way in. We had our 5th session today, and the way she has with him.. She got him engaged and playing with her, making eye contact, even mimicking words, i would be lying if i said i didn't get teary a couple of times. She is totally gung ho for us pushing for further OT, ST, and ABA too, and gave us info on the insurance we need to enroll him with, so that as soon as he's approved, he'll qualify for 3-4 hours a day of in-home ABA. She just.. I can tell that she actually cares, and she is so good at what she does, at least with him. It was an amazing day here. No one's jackassery can ruin that, AND grandma is gone til saturday, so double whammy haha.

trianna

I don't have any advice and I think the other ladies have shared some really good ideas, but I wanted to say I feel your pain! My son has Down Syndrome and we get some really rude comments by people who don't "get it"... The best was a random lady at the hospital who said, "Oh, I didn't realize he has Down's (another pet peeve of mine, when they use "Down's"..), he's so cute though. Pardon me? You mean kids with Down Syndrome aren't cute?!
She also suggested he maybe had a "mild case".... Uhhhh. No. He has 47 chromosomes. That's that.