How much do you tell people? - Mothering Forums

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#1 of 16 Old 06-27-2014, 04:35 PM - Thread Starter
 
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How much do you tell people?

We live in a lovely bubble; we homeschool and I work from home, and we live in a diverse urban community where quirks are the norm.

Therefore, my 5yo doesn't have to be anywhere at a certain time, wear anything that she doesn't want to, sit still for any length of time, or interact with large groups. We're able to control her environment, nearly always. For the most part, we've been able to avoid situations where DD's challenges are exacerbated, triggered, or made fun of.

We've even managed to avoid official diagnoses until recently, even though we've known since she was an infant that she was different from her peers. Now, though, we're involved with the neuro-psych department at the Children's Hospital.

She has severe anxiety, OCD, SPD, and Tourettes. As well, she is gifted (were we doing public school she'd *just* be going in to kindergarten this coming September, but she's already reading at grade 4 level, math at grade 2/3 level), which sets her apart from her peers too.

We have a supportive homeschooling community, but even within that, the kids are starting to notice her differences. The reading is even an issue there, being that most of the families are unschoolers who are not doing any formal academics. We didn't either, she just started to read on her own about two years ago.

What I'm wondering is how much do you offer explanations for behaviour attributed to your child's special needs? Do you offer information? Or do you wait for people to politely inquire? And how much do you focus on the challenges? Do you tell your child about their official diagnoses? Do you seek out friendships with other kids with similar challenges? Or do you let your child truck along, until something comes up?
How much do you steer away from something or towards something because of your child's special needs?

We never wanted her identity to be her diagnoses, but now that she'd getting older, I wonder if we're mistaken in our approach.

I'd love to hear from other mamas ... I'm so sad to be dealing with this at all, and I just want to make sure that we're taking care of our DD on all levels.

dust.gifFour-eyed tattooed fairy godmother queer, mama to my lucky star (5) and little bird (2.5). Resident storyteller at www.thestoryforest.com. Enchanting audiostories for curious kids. Come play in the forest!
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#2 of 16 Old 06-28-2014, 02:29 AM
 
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This is a tough one and I don't think there is one simple answer, so I'm just going to ramble about how I handled it.

My oldest son is on the autism spectrum and how I present that has changed over the years. He's now 15.

In the early years, I really didn't offer a lot of information, because I didn't want people to see him as "the autistic boy". I wanted them to see the whole picture first. That being said, as my son got older, his quirks became more noticeable. He was socially awkward. He would have major meltdowns about small things. He also has an auditory processing disorder, so he'd often be confused because he didn't understand what other people were saying. He had sensory issues and was constantly chewing on things. It was pretty obvious to adults and children alike that he was different, so whether I was open about it or not, it was out there.

As time went on, I became more open about his diagnosis. I realized that the people I wanted in his life were the people who actually used his diagnosis as a way to get to know him better, not to define him. They would speak more clearly to him and make sure he understood what they were saying. They wouldn't expect him to look him in the eyes. They would understand his triggers and help to avoid them. They would dig deeper instead of walking away. They took the opportunity to see past his struggles to the child that was inside.

As I became more knowledgeable and comfortable with his diagnosis, I saw talking about it was actually really good for me, for him, and for other parents who might have been struggling to cope with having a child with special needs. It can be really isolating for parents, as well as kids when no one wants to talk about the elephant in the room. Some people are just not sure if it's polite to ask questions, so if something was going on that related to his special needs, I'd say something along the lines of, "He is having trouble understanding what you're saying because he has an auditory processing disorder. Sometimes you need to really get his attention and check in to see if he is understanding." Then it made them feel more comfortable to ask questions.

Being very open about his diagnosis with him, taught him how to advocate for himself at a pretty early age. He is great about asking for help or for clearer explanations. It also taught him to be comfortable in who his was at that there was no shame in being different. His openness about his struggles has made him an incredibly compassionate understanding supportive person. He is awesome at helping other people look past their own struggles to see their own strengths. I've heard him say to his younger cousins and brothers when they get frustrated about thing, "Hey, it'll be OK. I know it's frustrating when it's hard to do something, but look at how good you are at (fill in blank here). Everyone struggles with something and everyone has things they're great at." Then he'll follow it up with a funny story about something he has struggled with. It's nice to know he really internalized some many of those things we have worked with him on over the years.

Umm, so that's my ramble. I hope something in there will be useful to you,but like I said, there is no simple answer.

 
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#3 of 16 Old 06-28-2014, 07:14 AM
 
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Originally Posted by starling&diesel View Post
What I'm wondering is how much do you offer explanations for behaviour attributed to your child's special needs? Do you offer information? Or do you wait for people to politely inquire? And how much do you focus on the challenges? Do you tell your child about their official diagnoses? Do you seek out friendships with other kids with similar challenges? Or do you let your child truck along, until something comes up?
I don't think there is a way for other people to politely inquire.

My DD is on the autism spectrum, and is also gifted. We didn't know until she is 13 that she is also gifted because her autism overshadowed it and she wasn't able to comply with testing. She homeschooled until she was 12, attended a traditional school for 1 year, attended an alternative school for 2 and half years, and then entered college.

I've handled this issue in different ways at different times, and it took me YEARS to become comfortable talking about it. At one time, I felt like you did and tried the same things. Ultimately, I found that being honest with my DD gave her more peace with herself, a way to talk about what was going on and the ways she knew she was different from others. You see, while I could refuse to speak about it, it didn't keep her from being able to tell that she was different, it just kept her from having a way to process those differences or have any peace about them.

I also think talking honestly to your close mommy friends is something that you can choose to do for YOU, so that those people who consider friends can offer a listening ear and support. When we decide something is a secret, we cut ourselves off from others.

Although my DD's social challanges are such that other kids with the same challanges aren't any easier for her to be friends with, I have found that I relate best to other moms whose children have challenges. Sadly, over the years I've met very few moms whose kids are normal or only gifted who "get it." Pretty much all my friends either have a special needs child or have no children. They tend to be the people who accept her at face value for both her strength and weaknesses, are able to celebrate her accomplishments with me, and can be there for me when things are really getting to me. They are the people who can be around her and go out to eat, or have her at their house, or whatever, and its OK.

For me, choosing to be somewhat open was part of being authentic with those I really consider friends. At the same time, I don't scream my DDs diagnosis, or personal information, and I don't think I need to offer it up to those who simple judge.

I'm not sure if this will make sense, but I think that in an odd way, my DD functions to sort out other people. She gets rid of shallow, judgmental people who think that all people are supposed to be pretty much the same, and she allows more evolved humans who accept others and are compassionate to remain. Even though I've lost a lot of people over the years, I can honestly say its left more room for the many amazing people I've met.

I also think that ultimately, you are going to have to talk to her. She isn't going to stay in the 5 year old bubble forever. This really isn't a question of whether or not you will talk to her, but how and when.

but everything has pros and cons  shrug.gif


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#4 of 16 Old 06-28-2014, 11:06 PM - Thread Starter
 
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Thank you so much for your thoughtful replies, Linda and Queen.
I really hope that I can integrate some of your mama-wisdom into my parental toolbox sooner than later and figure out how to approach DD's challenges with unwavering understanding and without shame.
I feel like I need a stronger backbone. And that even though I've been a very strong mama-bear for her so far, I need to be even stronger as she gets older and needs me to advocate for her in more specific ways.
It's tempting (perhaps because DP and I are just getting used to accepting the official diagnoses) to blurt out her differences as a way of explaining her behaviour, and that impulse doesn't sit right. Tact is something that will come later, I hope.
Linda, it's so true about wanting to connect with mamas who have SN kids. I spent an hour talking heart-to-heart with a mama at our HS park day whose child has PANDAS. She totally got, right down to the mourning that happens when you realize the struggles your child will face.
I like the suggestion to bring my mama-friends a little closer into the circle and look for support and love there.
Queen, so true, whether I'm talking about it or not, it's out there. The elephant in the room, indeed. I get the sense that other mamas want to ask about her tics, especially, but that we're all being 'too polite' or not wanting to point out DD's difference. Sometimes I wish they'd just ASK ALREADY, so that I could use get a sense of where they're coming from before I start talking.
Thanks again, mamas. It's so good to be able to turn to my community here too. I really appreciate you taking the time to reach out. My heart is hurting, but it's advice like yours that makes it all a little easier.
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#5 of 16 Old 06-29-2014, 02:36 AM
 
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I don't think there is a good way to for people to ask, they may well be waiting till you bring the subject up.

I recently went along for the first time to my local autism support group, to find it's run by a mum I see daily in the playground. We've met at a couple of groups with our children over the years but don't know each other that well, but she'd spotted DS and was wondering how to start a conversation with me. If she had I'd probably have gone months ago, knowing there would be a familiar face!

It is good to have those mum friends who I can talk to about things, especially finding some who are on similar paths.

At the moment we still haven't told many people, his teachers, doctors etc and close family but that's about it. I wanted to get to a point where he feels comfortable with the diagnosis before we tell too many people.

It is a hard balance though at 4 or 5 he didn't (to me at least) seem to be that different to his peers, now at 7 1/2 the differences are becoming more noticeable.
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#6 of 16 Old 06-29-2014, 07:34 AM
 
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We had our younger daughter evaluated when she was four because of some unusual behaviors like arm-flapping. We found out that she's not on the autism spectrum, but is sensory-seeking.


Now that she's nine, she does a lot less arm-flapping than she did when she was younger, but she does enjoy spinning in circles more.


Like your daughter, she's homeschooled. When she first started going to Sunday School at about five, I did talk with the teacher so that she wouldn't be too shocked or worried by the arm-flapping. I don't feel such a need to talk to others about it nowadays, as her sensory-seeking behaviors seem much less-pronounced. For example, she's become much better at picking up others' cues regarding whether they want physical contact.


However, Christmas before last, I was rather surprised when a complete stranger we'd been sitting next to during the Christmas Eve service said, "She IS on medication, isn't she?" This woman is a retired school employee -- a teacher, I think. I thought her question was rather rude, but I simply said no but that we'd had her evaluated. If I'd been more prepared, I probably would have added that no one had ever even recommended dd being on medication (even if it had been recommended, I wouldn't do it).


While I don't think we owe it to any rude person to just answer their questions, I've become increasingly aware that in our church, there seem to be two "camps" regarding children's education and behavior -- We have a large number of homeschoolers (including unschoolers) who are pretty accepting of the idea that children don't need to fit "the norm" in terms of behavior and academic skills, and we also have a large number of retired teachers and other school system employees, and most of these retirees worked for the schools during a time when there was less tolerance for diversity, and a much stronger emphasis on fitting in than there currently is in the school system today.

With regard to the latter group, some unschoolers at church (including myself) have occasionally been the recipients of concerned questions and advice. I get the impression that some of these school-oriented people are very worried about homeschooled children "falling through the cracks" and not getting their educational and developmental needs met.


So when questioned, I'm inclined to give these people just enough information to satisfy their concerns about my child "falling through the cracks" -- not because they have a right to this information, but because I don't think it would be especially beneficial to my child or my family to have a group of concerned people scrutinizing her for possible signs that she's not getting her needs met.


Some people would say we should just drop out of church and avoid people who aren't accepting of unschooling -- but I've found this approach too limiting for my extraverted daughters. So we get out there and rub shoulders with all kinds of people, and I just answer any questions that come up in whatever way I feel is best suited to the situation.

Susan -- married unschoolin' WAHMomma to two lovely girls (born 2000 and 2005).
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#7 of 16 Old 06-29-2014, 12:46 PM - Thread Starter
 
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It is a hard balance though at 4 or 5 he didn't (to me at least) seem to be that different to his peers, now at 7 1/2 the differences are becoming more noticeable.
Thank you for posting, LaughingHyena.

This rings true to me. I feel like we're in the dark at the crossroads right now, and the further we go down our own path, the further it diverges from the typical one, and so I want to have a map.

But there is no map. Just the lantern that lights what's immediately in front of us.

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#8 of 16 Old 06-29-2014, 12:49 PM - Thread Starter
 
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Like your daughter, she's homeschooled. When she first started going to Sunday School at about five, I did talk with the teacher so that she wouldn't be too shocked or worried by the arm-flapping. I don't feel such a need to talk to others about it nowadays, as her sensory-seeking behaviors seem much less-pronounced. For example, she's become much better at picking up others' cues regarding whether they want physical contact.
I so very much look forward to the time when DD gets better at picking up other's cues regarding wanting/not wanting physical contact. I would say 'more than you can imagine' but I'm guessing this is one place where many of you absolutely do get it.

Thanks for your post, mammal_mama.

dust.gifFour-eyed tattooed fairy godmother queer, mama to my lucky star (5) and little bird (2.5). Resident storyteller at www.thestoryforest.com. Enchanting audiostories for curious kids. Come play in the forest!
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#9 of 16 Old 06-29-2014, 07:33 PM
 
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This rings true to me. I feel like we're in the dark at the crossroads right now, and the further we go down our own path, the further it diverges from the typical one, and so I want to have a map.

But there is no map. Just the lantern that lights what's immediately in front of us.

For me, part of the journey of being the mom of a special needs child has been making peace with the unknown.
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but everything has pros and cons  shrug.gif

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#10 of 16 Old 06-30-2014, 10:20 AM
 
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I so very much look forward to the time when DD gets better at picking up other's cues regarding wanting/not wanting physical contact. I would say 'more than you can imagine' but I'm guessing this is one place where many of you absolutely do get it.

What was really affirming for me was the fact that my own instincts about the best way to help her learn to interact more respectfully and empathically with others were actually right on-target. Although an occupational therapist recommended enrolling her in an early childhood program through the public schools, and many others thought punishment was in order -- my instincts actually told me to do the opposite and avoid big groups whenever possible, and spend lots of time interacting with her one-on-one and explaining how different behaviors made me (and people in general) feel.


One fine day, I realized we could go to the park and I could sit on the bench without worrying about her getting aggressive or upsetting other kids by invading their space. She loves playing with other kids now and generally gets along quite well with them, although I will say that she seems to click best with kids who are a little younger than her.


She learned these social skills, not by being thrown in with other kids or being punished, but by relating one-to-one with an adult.

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Thanks for your post, mammal_mama.

No problem! Thank you so much for sharing your heart!

Susan -- married unschoolin' WAHMomma to two lovely girls (born 2000 and 2005).
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#11 of 16 Old 07-01-2014, 12:12 AM
 
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For me, part of the journey of being the mom of a special needs child has been making peace with the unknown.
I can definitely relate to that. I'm not there yet though.
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#12 of 16 Old 07-01-2014, 06:58 PM
 
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Our situation is a bit different, but I HAVE to tell people about DD every time I leave her in the church nursery. It has allowed me to become more comfortable with it, and I have been really blessed to see how understanding people are when given the opportunity. My DD doesn't have an obvious special need-- but if she has a seizure, I need to know about it, thus I tell anyone that is caring for her. I also have learned to speak comfortably and casually about how much EI services have benefitted her. Because she's under 2, polite conversation leads to child development and the topic presents itself naturally. If I see someone really watching how I help her on the playground, I want to defend myself, explaining that I'm helping her with her physical therapy goals. But, if I'm feeling defensive, I just know I don't need to enter into a conversation about my family.
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#13 of 16 Old 07-03-2014, 11:24 AM
 
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Thank you for these questions and responses, they are speaking right into my own situation and making me feel less lonely in it all! So while I'm not sure I can be helpful in answering, and of course all our situations and kiddoes are unique, maybe a 'me too' will help you feel some support and understanding of what you are going through.

My son has differences (SPD meltdowns, major language delay, sensory seeking behaviours, perseverations, extreme self limiting of diet ) that aren't immediately apparent to others but as he gets older are becoming more obvious. we do have to approach parenting and life quite differently to keep things manageable.

I've been pondering what some 'go to' phrases could be that I would be comfortable offering up to people when i feel the need to explain his needs or behaviours and things that we can't do, but I've not really come up with much yet!

The internal wrangling about how, and how much, to 'explain' him to other people is a real struggle for me. It's a tough one isn't it!? Also my bruised feelings when people (mostly well meaning) make completely unhelpful comments are weighing me down. Relating to other mums who only have NT kids is so much harder than i expected too.

Focusing on the people, places and activities the bring us both some joy and getting some counselling to help me process my own big feelings have been helpful.
We are still early in our journey as DS is 3.

Anyway thanks again for your thoughtful questions and answers OP and mamas who have responded!
Lottie
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#14 of 16 Old 07-03-2014, 12:59 PM
 
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I don't have any great advice, but you might want to check out the Davidson Gifted Forum. There is a wonderful 2e board that might be helpful.

http://giftedissues.davidsongifted.o...m_summary.html
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#15 of 16 Old 07-06-2014, 05:19 PM - Thread Starter
 
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Thanks for chiming in, Lottie. It is comforting to know that other folks are dealing with this kind of thing too.
And thank you for the site recommendation, Kathryn. Off to check it out now ...

dust.gifFour-eyed tattooed fairy godmother queer, mama to my lucky star (5) and little bird (2.5). Resident storyteller at www.thestoryforest.com. Enchanting audiostories for curious kids. Come play in the forest!
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#16 of 16 Old 07-07-2014, 12:47 PM
 
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I've been pondering what some 'go to' phrases could be that I would be comfortable offering up to people when i feel the need to explain his needs or behaviours and things that we can't do, but I've not really come up with much yet!
Having a standard (ish) response is something that has really helped me with some situations. I think it also helps DS, I know he's picked up on a couple of my "go to" responses.

One example is his scooter, his balance on a 2 wheeled one is not great and he gets on better with the 3 wheeled micro scooter. However although his is for a an older child the majority of ones I see mini micros ridden by preschoolers. Several times children in his class have asked why he still has a 3 wheel scooter and my response was because it's easy to balance he can go faster. I've since heard DS tell children this himself, a huge step as he doesn't often answer questions at the best of times.

I'd really like to think of some for other situations too. Any ideas on explaining why he wears a chew bracelet or doesn't dress up on dressing up days at school.
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