Q for parents of kids who are emotionally/behaviorally different

[UptownZoo]

Hi all,
I'm writing an article about my experience with stigma as the parent of a child with behavioral/emotional differences. I'm wondering how others have experienced this?

I'm not doing research here; no worries that I'm going to "borrow" anything from anyone. It's just that writing about it has me wondering how typical my feelings about it have been. My sense (from this group and other online groups, plus my support group IRL) is that most everyone feels that stigma, but I've never asked specific questions about it before.

So, what's it been like for you? And how is it different at different ages? Did getting a dx (if you have one) for your child help or hurt? I know for me, it was worse (MUCH worse) when Carter was very small, but I wonder if that's because people give me less crap, or because my skin has gotten so much thicker?

[HarperRose]

Max has always had issues w/ aggression. We've been ostracized, not invited places, I've heard from others that people said we were lazy parents and Max was a brat, others have gone on and on about how badly behaved he was. People I once thought were friends.

It sucks. It flat out sucks. Those people are not my friends. I stop associating with them because it's not worth my time to stress over whether Max is on perfect behavior or having a really bad day or somewhere in the middle.

I've gotten a thicker skin over the years. It's exhausting to cry when you're not welcome. I had to move on from that mentality. Do I still get emotional about the challenges Max faces? Yes. But now I don't worry about what other ppl are saying about him or how they're treating us.

Don't like my kid or can't handle the way he is? Screw you and the horse you rode in on.

On the flip side, there are those who may become frustrated with his behavior, but they welcome him back with open arms. They do anything they can for him (and us). THOSE people are my friends. THOSE people take Max and all his quirks and accept him just the way he is. THOSE are people worth hanging around with because whether they get it or not, have SN kids or not, they care about us from the depths of their souls.

Those good people are the ones that bring tears to my eyes now. Tears of joy and love and acceptance and the knowledge that we're ok.

[Lilypie32]

My son was diagnosed at the age of 3 and he is now 5. As he has gotten older his aggression and misbehaviors have gotten a lot worse. I don't take him many places as it's just too stressful for both for us. I always feel stared at when he starts acting up. I have even had complete strangers make fun of him. It makes me so angry and sad that people have to be so judgmental and nasty. I try to ignore people around us when we have to go out and keep my focus on him.

I don't have many friends as I just don't have the time or energy to nourish the relationships. My family does not understand his issues and I have even heard my mom make a statement about how I am raising a brat. My brother has screamed at him and tells me not to blame his autism. It's impossible to make them understand and no one takes that time to get to know my son. We don't get invited out with my family either.

I'm trying to rise above all the crap but I'm not able to yet. I'm beat and angry and frustrated and sick of everyone. I just want to move away from my family so I don't have to deal with the crap. I can deal with the strangers as we can just leave. Family doesn't go away.

[UptownZoo]

Oh, man. I'm so, so sorry that you've both been on the receiving end of such crap! I guess a part of me hoped that other people were getting better treatment than we've gotten, but I guess it isn't so.

I was at my eldest son's high school play last week (BTW, my son was totally the best actor evah! ) and there was a little girl making a repetitive noise a few rows down from us. (Carter was actually pretty quiet; I let him watch cartoons on my ipod when he got bored and I brought his weighted blanket, which I didn't think would work, but he made it through almost half!) So this girl is going on, not terribly loud, and people around us started to get bugged; I could hear them making comments about the girl and her mother. I'm so sensitive to that now that I just wanted to stand up and shout at the whole auditorium to stop muttering and complaining! But I held myself down and just said to a few people around us, "Hey, maybe she's got developmental differences or something and she can't be quiet!" The response? You guessed it: "Well then, they should keep her home!" Yes, I cried. My DH took Carter home at intermission and I moved to the other side of the auditorium and tried to focus on enjoying my son's performance.

It just gets old, doesn't it? Really, really old.

[HarperRose]

Originally Posted by UptownZoo

But I held myself down and just said to a few people around us, "Hey, maybe she's got developmental differences or something and she can't be quiet!" The response? You guessed it: "Well then, they should keep her home!" Yes, I cried. My DH took Carter home at intermission and I moved to the other side of the auditorium and tried to focus on enjoying my son's performance.

It just gets old, doesn't it? Really, really old.

That makes me want to tell them, "I hope you have a child with special needs."

I just want them to understand this. Maybe if they walk in our shoes they'll see exactly what it means, what we go through.

And on a similar note, some ppl I just want to punch.

[slsurface]

Thank you for bringing this subject. I've been dealing with this a lot lately and having difficulties talking to people IRL about it.

So, what's it been like for you?

I'll try to keep this *brief*. My DS was diagnosed with SPD in January after over 6 months of trying to get answers, help, and find an OT. We knew from day 1 that DS was different, he was a high needs baby and never seemed capable of self-regulating even as he got older. Starting at around 2.5 years old, he started acting out at preschool/daycare and scratching teachers as well as going into absolute rages/tantrums that would last a very, very long time. Around his third birthday the director of the school finally told me that she thought he had SPD - thus began my inquiry into SPD and how to get care for DS. I was worried that his behavior was eventually going to get him thrown out of school, but I eventually found a community organization that works with preschool aged children. A psychologist observed DS for several months at school and home. He gave the school teachers and us tips on how to deal with DS's sensory issues. He also wrote letters on our behalf to DS's pediatrician requesting an eval. This was very important because the ped didn't think there was an issue, but we needed the referral for insurance.

Meanwhile, I've been trying to deal with all the stress from the school and our family. The school sometimes seems very willing to work with DS and make accommodations, but we still have our difficulties (see this post: http://mothering.com/discussions/sho...638&highlight=). I worry that DS is going to feel the stigma of being "different" - he is frequently singled out for his behavior.

Initially DH was in total denial about it and I had to struggle to get him to realize the extent of DS's problems. He is now on board, but still doesn't help with implementing OT activities at home as much as I would like. DH's parents are in total denial. I dread their visits because they always get him so over stimulated! I've tried and tried to tell them that tickling and noisy, roughousing activities will always lead to DS either getting overly aggressive or having a tantrum. They just.won't.listen! My mom is generally supportive.

My friends are supportive on the surface, but I get the feeling that they are uneasy. I don't really know how to talk to them about it. Most of them have seen how bad things can be with DS, but they all want to brush it off as being a "rambunctious boy" (they all have girls). I also sometimes decline activities with them and their kids, just because DS can't always handle those situations.

I try to give DS rich experiences and take him to museums and such, but going to public places often ends up in difficult situations. Just last week DS had a total meltdown over sharing a toy at a childrens museum. Usually I can defuse these things before they get bad, but this time we nearly had to leave before I could get him to calm down. I try to ignore all the glares I get from other people/parents. I do my best not to put DS in situations that will result in difficulties and plan ahead as best I can, but I also cannot just sit at home, yk.

When I tell people about DS, they always act really funny about it. In fact, at one community playgroup gathering, the organizer got up and walked away after I told her that DS has SPD - I was totally put off and offended, especially since she was supposedly education in early childhood education.

And how is it different at different ages?

Don't really know yet...

Did getting a dx (if you have one) for your child help or hurt?

Both. It's definitely helped to get weekly OT and to learn more strategies from the OT for at home. Overall, DS has improved immensely in the past few months since he started OT. I think in another 6 months, he will be functioning much better, particularly at school.

However, the biggest downer with the dx is that DS's school seems to think that he's suddenly going to be "cured" and that his behavior should be perfect. The primary teacher in his class has been incredibly negative about him and she seems unwilling to make accommodations - as if the OT should "fix" him and he won't still need a little extra help to make it through the day. I'm so frustrated and don't really know how to deal with this. Thankfully, the other two teachers are very positive and recognize that DS has made amazing progress.

[UptownZoo]

Slsurface, I have experienced so many of the same things! I think it hurts the most when our own families won't try to understand, and the worst years are the early ones. I share your experience with your DH, and from what I've heard, it's pretty common: mom knows first. I felt so terribly alone in the first 3-4 years before DH came into my little boat!

The family is what hurts most, but it's the schools that make me most angry because it's their profession, and why do they think it's OK for them to NOT take the time to do some reading? I mean, really, a few hours of research is not too much to ask. When I was director of a child care facility and we got any child with special needs, the first things I did were a) ask the parents to tell me all about their child and b) bring me some reading material or point me to relevant websites. I then gave the teachers the most helpful material from the reading and required them to read it. That's just not something that's unreasonable to expect. Not that I don't know that the vast majority of teachers have oversized work loads, but lots of kids aren't standard-issue and this resistance to learning that some educators have is kind of baffling.

Of course, before anybody jumps, I know that there are many, many wonderful educators who are very willing to learn and work with families. I think there are more good than bad; it's just that the bad ones have such a huge impact!

[slsurface]

Originally Posted by UptownZoo

Slsurface, I have experienced so many of the same things! I think it hurts the most when our own families won't try to understand, and the worst years are the early ones. I share your experience with your DH, and from what I've heard, it's pretty common: mom knows first. I felt so terribly alone in the first 3-4 years before DH came into my little boat!

The family is what hurts most, but it's the schools that make me most angry because it's their profession, and why do they think it's OK for them to NOT take the time to do some reading? I mean, really, a few hours of research is not too much to ask. When I was director of a child care facility and we got any child with special needs, the first things I did were a) ask the parents to tell me all about their child and b) bring me some reading material or point me to relevant websites. I then gave the teachers the most helpful material from the reading and required them to read it. That's just not something that's unreasonable to expect. Not that I don't know that the vast majority of teachers have oversized work loads, but lots of kids aren't standard-issue and this resistance to learning that some educators have is kind of baffling.

Of course, before anybody jumps, I know that there are many, many wonderful educators who are very willing to learn and work with families. I think there are more good than bad; it's just that the bad ones have such a huge impact!

Thanks for the support. Good luck with the article.