For parents of special needs children... - Mothering Forums

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#1 of 29 Old 03-10-2007, 09:09 AM - Thread Starter
 
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We met the sweetest baby girl at the midwife center the other day, and it set me to wondering...

When your child is obviously "different", are there particular ways that others act and interact with your child that you appreciate most?

Do you prefer that people do ask questions, or treat your child like they would any other child? Is it a relief when people don't have questions or judgements to make?

The reason I ask is because the little baby girl had Down's Syndrome, though I didn't notice until her mom got her out of the carseat and sat her up to look at us. She was truly adorable : and I cooed and babbled at her like I would any baby.
My 4 yo ds did notice that she was "different" but didn't say anything until dinnertime, when we were telling his dad about our day. He followed my lead when we were with the baby and just showed her the truck he was playing with, and agreed with me that she was indeed a pretty baby.

I've not had to deal with this personally, but I was thinking it would be mighty tiresome if I had a child and all anybody noticed was her "differentness"--if nobody could get past that and go directly to "She is so beautiful! What a sweetie".
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#2 of 29 Old 03-10-2007, 01:21 PM
 
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I really used to get upset when people asked me what was "wrong" with my daughter. She's almost 11 months old but looks like a newborn and has pretty distinct facial features. I've really become used to the questions now and as long I think someone is really interested, I carry around pamphlets about Cornelia de Lange Syndrome to give. It is not really common and takes so much time to explain, that I figure if I just give the name of the syndrome and the pamphlet, if they are interested they can read more. I really prefer to be asked questions than to just have people stare at her.
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#3 of 29 Old 03-10-2007, 01:44 PM
 
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Maggie, thank you for your considerate and thoughtful question and the gentleness you conveyed in your OP. What a breath of fresh air! I wish there were more people like you around, because it can be very tiresome when you're out and about and get stares or judgmental comments without fully understanding.

Our difficulty, too, is that my 3 SN kids have "invisible" SN, other than my 8 yo dd with facial tics (Tourette's). What I mean by that is that ADHD and SPD and learning disorders are not visible to the eye other than when they're not able to follow along with the group or plugging ears due to too much sensory stuff going on for them, etc. It looks like defiance on their parts, but it's not. It's not something they can control. We try our best to be respectful when we're out and about, but it can be physically and emotionally so exhausting just getting a few items from the market and then when you add someone's look of disgust or intrusive questions, I feel isolated and in a conundrum (do you "educate" that person & feel like you're having to "go public" or toughen up and try not to let it bother you?). Please don't misunderstand; I love my kids and am not ashamed in any way. I advocate for them 100%, it's just that day after day, the fatigue of dealing with others' "curiosities" can be wearisome. Then I also feel guilty for the other person because how are they supposed to know? My mom still says/does things that are unkind because she can't grasp that these are my kids' normal challenges and not something they're trying to do.

An interesting aside, we're a multi-racial family (all our kids are adopted), so that brings in an element of curiosity (& questions)...but personally, the BEST comment (will never forget it!) that we ever got was when this older grandpa guy came up to us, touched my arm gently and said, "You have a beautiful family." Still chokes me up (in a good way) and that happened years ago.
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#4 of 29 Old 03-10-2007, 01:54 PM
 
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Your curiosity and willingness to be positive about this speaks volumes to any parent of a SN child. I can't say what other people would want you to do, I can only speak for myself. I guess the big thing for me would not to make assumptions. My son has autism and an SPD, so on the outside he looks completely "normal". There are no visual cues to let someone know that he has a disability and that is hard. People just assume that he is acting out because he is a "brat". I think one of the biggest things you can do is not make assumptions about other people's kids, because you never know what is going on. I know that can be really hard when you are at the grocery store and you see a kid flailing around on the ground screaming.
All in all, I think most parents want some consideration for what their cvhild is going through, but they still want their child to get the same love and attention from other that a NT or non-disabled child would get. Not an either-or thing, see what I mean?
Thanks for taking the time to try and understand where we are coming from.

Namaste,

Michelle

M : proud mama to B (16) : and G (8) and : x 2 :
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#5 of 29 Old 03-10-2007, 11:07 PM
 
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Dd's issues are very obvious, and were even more so when she was an infant. I appreciated it when people acknowledged her as a baby -- the "ooh, isn't she sweet" and making those baby sounds. I didn't like having to answer everyone's questions, especially if it had been a bad day. I also really hated the whole "well my sister's cousin's friend had this baby who . . ." because inevitably, it was completely irrelevant.
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#6 of 29 Old 03-11-2007, 12:16 AM - Thread Starter
 
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Whew! I was worried my question would somehow stumble into being offensive.

I didn't remember it until just now but my brother has an obvious "differentness"---that I've essentially forgotten about because I'm so used to it and it's never hindered him in any way. I guess I should've asked my mom how she felt when he was a baby.

Meeting that little girl just made me realize that I need to find the best way to teach my children to be accepting and kind to everyone, and to be sensitive about asking questions when someone's looks or abilities arouse their curiosity.

Thank you for the answers so far!
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#7 of 29 Old 03-11-2007, 01:21 AM
 
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I appreciate questions but not comments if that makes sense. I know people are curious or disturbed or whatever, so I'd like for them to ask, but no one ever does. Damien has such a normal existence, just modified to his level or need, so I also like it when people treat him like any other 3 year old. We've had a few stangers do that, but most just kind of stare and then ignore.

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#8 of 29 Old 03-11-2007, 01:24 AM
 
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My dd appears to be typical but when she was a baby she had an NG feeding tube in her nose for 4 mos. She now is tube-fed through a tummy tube. It's discrete but sometimes people notice and comment or stare.

I too was tired of the "what's wrong with your baby" questions. I could not believe the rudeness. But there were other parents who approached and would share that their baby also had an NG tube for awhile or they would come up and say "Your baby is so pretty! She has such big brown eyes!" (which she does) and be able to look past the tube. It makes my day.

I guess what I value most now is when people treat her the same as anyone else even if they see her tube running out her shirt and going into her backpack with the feeding pump in it. When they ask "how old is she?" type questions and not "what's wrong with her" questions. If they ask about her tube in a positive way, as if to get education about it or to tell me their friend's kid has one or something, then I am happy to educate them on it.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#9 of 29 Old 03-11-2007, 01:25 AM
 
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starlein26 Your 3 year old can come play trucks over here.
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#10 of 29 Old 03-11-2007, 04:29 AM
 
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I agree that questions are okay, but it depends when/where/how. I went home crying from a playgroup last week because of one woman- dd looks typical until you realize she's 20 months old, because she's tiny for her age (28" and 22 lbs). So inevitably when someone realizes she's not walking, not talking, and tiny, the questions begin. 99% of the time I have no problems explaining a very short version of the truth. But I really prefer not being asked in the first place whether my child was a preemie (she wasn't!) or whether she's hit X milestone because chances are, she hasn't.

DD1 7/13/05 DD2 9/20/10
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#11 of 29 Old 03-11-2007, 04:37 AM
 
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Oh man the "was he a preemie?" Q is pretty common down here too.

"Um, no." Is usually my answer.

My favorite, is when you tell them what the problem is, and then they proceed to argue with you that NO, your child is or will be fine. Makes me so mad.
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#12 of 29 Old 03-11-2007, 03:07 PM
 
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I always get asked what's wrong with Eli eventually..and I say, well he's autistic and I get the "But he looks fine" answer..that is somewhat hard too..so sometimes I just say he's shy or something.

I see lots of different kids of differing abilities every day because of where Eli goes to school, and I hope that he and his sister grow up to see that we're all just people with different challenges. my older kids were always volunteering to be helpers with the SN classes so they got a lot of exposure too. As a result they treat their baby brother as a baby brother, yk?
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#13 of 29 Old 03-11-2007, 05:19 PM
 
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My son looks fairly typical except for some red birthmarks over his eyes, but he sounds like he ate a herd of heavy smoking canadian geese. So I think people are scared of him. So no one ever says how cute he is unless they know us. I don't mind people asking what's wrong with him, but my biggest pet peeve is "oh, I know how you feel, my son used to snore as a kid." : My reaction to that is probably about the same as someone telling a parent who's kid has cystic fibrosis "I know how you feel, my kid had a cold once." But aminly I think people are so afraid that he's about to keel over that they keep their mouths shut and just stare at us in a very uncertain manor.
I tihnk I would prefer someone asking what's wrong with him, and no pity when I say what he has. Then just treating him like you would any other cute little baby.
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#14 of 29 Old 03-11-2007, 07:14 PM
 
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I too appreciate the asking. If you check out some of the threads on the SN forum lately you'll find lots with moms feeling tired of and hurt by strangers making assumptions and judgments when they know nothing about our stories. If there's one thing I wish others would want to teach their children it's empathy and openness to what may seem different. So, for instance, don't judge a mother buying pudding for her daughter (ahem) - this may be the only thing she can get her daughter to eat and she needs whatever calories she can get. Don't look askance at the mother of the boy flailing and screaming in the store - her son might be in sensory overload. If you're curious, ask, but then don't assume you understand just because you know someone who also has a son with Asperger's or whatever.

I think the basic answer to your question is - treat our children as humans (like you did with that baby girl), teach your son to do the same (like you did), and remain humble.
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#15 of 29 Old 03-12-2007, 12:09 AM
 
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You know what's funny - even though I know what I can handle, I too am never sure how to deal with other parents of sn kids. Sometimes, I find myself wanting to go up to them and ask them about their child, partially b/c I'm on an everlasting hunt to find out what's causing Maura's delays....but I never do that b/c I feel like it's crossing a line. If a parent wants to, I think they'll put it out there pretty quickly. Or at least, I think they will because that's how I do it

When I meet people, I tend to just throw it out there...as in, they ask Maura how old she is, so I'll answer "Oh, she's 3 1/2, we're still working on talking..." or "She has some developmental delays but she's doing great and learning new things all the time." I know sometimes, it seems weird to do, but if I don't do it, eventually I notice they start eyeing her with that "What's wrong with her?" look. And that sometimes gets under my skin. I know people can't help it - I'd probably do it too if I didn't know Maura but saw her in action. Like the other day when we went out to lunch and she was talking in her gibberish while pushing food in her mouth - the kids next to us were totally giving us the look while dad sat there pretending like all was normal. I kept waiting to hear a comment from one of the kids and was prepaired to jump in nicely when dad got all stuttery embarrassed, but the kids kept their comments to themselves amazingly (mine would have said loudly "Sheesh! What's up with that kid?" LOL!)

What has annoyed me - a couple not-that-close friends of mine have all but refused to ask me about Maura. Even though EVERYONE knows I have no problems talking about her issues. So the pair of them have gone behind my back to ask yet another friend what's up with Maura. I have to laugh b/c that friend just told them to ask me. They were all "Oh, we couldn't do that, that would be rude." My friend said "No, it's ruder to ask me. Phoebe has no problems with you asking her." Of course, after she told me about all that, I ran into them both (seperately), and the one just blurted out "So, Maura...anything new?" Seriously, how hard is it to say "So how is she doing? Have you learned anything as to what may be causing her delays?"

I have noticed that people seem to open up to me about the child/cousin/nephew who has sn's of any sort b/c I am so matter of fact about what we deal with. And I am genuinely interested in other conditions. Lord knows, I've read about so many of them!
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#16 of 29 Old 03-12-2007, 12:48 AM
 
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starlein26 Your 3 year old can come play trucks over here.

Thanks!!! :

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#17 of 29 Old 03-12-2007, 01:49 AM
 
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Thanks for your post. It struck a chord as DD has Down syndrome. Though now i not so sensitive, i would love it in the beginning when people said "Oh she is just perfect, or oh she is so beautiful!" (though i really hate that perfect word ). I would be bothered by saying like "oh she is probably the happiest baby around." Or anything that would be a stereotyping. Now something like that wouldn't bug me, but when she was little i was annoyed. I think the sweetest moments where when people just did the samething they would do for any other cute baby. Not over compensating, just being themselves. Again though, thanks for asking.
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#18 of 29 Old 03-12-2007, 03:33 AM
 
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My favorite is when people treat DS like any normal child - ask him questions, tell him he's cute (or tell me), etc. People who can see past the disability and to the child he is at heart... that's my favorite kind of person . And not everyone can do it - many people close to us still have problems treating DS like a typical kid. DS is cognitively intact and reacts appropriately to this kind of interaction, but I think approaching even more severely disabled kids this way is the best as well. No harm is done from saying to a child, "Hi sweetie! That sure is a cute hat you've got on" or whatever, even if they can't respond or don't make eye contact .

I don't like the "what's wrong with him" question if it's the very first thing that someone approaches me with - how rude. But if someone takes the time to strike up a conversation with me and then leads gently into the question, I don't mind telling them. Although it's sometimes it can be tiresome because DS's diagnosis and medical issues are complicated and hard to understand for people who don't have a medical background, but there's really no quick and easy way to describe what's going on with him so it can be frustrating for both parties.

In terms of teaching your child about other kids with special needs, I think the whole "everyone is different" philosophy works pretty well - they're learning that people have different family structures, skin colors, etc etc etc and that everyone should be treated with respect... special needs kids fall nicely into that scheme.
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#19 of 29 Old 03-12-2007, 11:59 AM
 
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In terms of teaching your child about other kids with special needs, I think the whole "everyone is different" philosophy works pretty well - they're learning that people have different family structures, skin colors, etc etc etc and that everyone should be treated with respect... special needs kids fall nicely into that scheme.
What's worked for my kids is telling them that it takes longer for their sister Maura to learn things so she needs some extra help. It's simple enough for the younger ones to get and yet covers enough to satisfy the older one's need for information. I think it helps kids if you don't make a big deal about things. If you treat the sn's child just as you would any other, they will follow your lead.

Also, my kids don't want big long explainations - they just want the basic facts. "Why is that child in a wheelchair?" My answer was "I'm not sure - it could be they have problems walking so need it to get around better." "Why does Maura need to wear those things?" (things being ankle braces) "They help keep her feet straight so she walks better."

Oh, and in thinking about it, I do like it when people treat Maura like I would treat her. I have a couple friends who are great about that. I don't like all the "What's wrong with her?" things, but I also hate the false optimism. "Oh, she'll catch up." And you can't treat her like every other kid b/c she's not like every other kid. Like when we were at a playplace, everyone else's child was running about all but unsupervised. I can't let Maura run about unsupervised, she might get hurt. I had to use the bathroom and asked my one friend to keep an eye on Maura - so she did, made sure Maura didn't leave her sight, helped her down things, etc - all while her son was running amok Which was just right of her to do.
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#20 of 29 Old 03-12-2007, 12:15 PM
 
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Some of my son's "defects" are very obvious. You can't look at him and not see at least his missing ears.So I get alot of stares, some questions, and lots of rude comments. I once had a lady ask me what I did to him: I am really sick of people asking in that "tone" whats wrong with him. Nothings wrong with him, he is perfectly Martin! He is exactly what he is supposed to be. And he's super cute!!!!!! The other thing that bothers me is when people notice, ask then say, "but he's still cute".....What I don't mind, and accually encourage is kids asking questions. I usually help them word the question so that I can teach them how to ask nicely without any feelings getting hurt. (for the next momma) Children are curious by nature. They don't really care, they just need to know. Kids have responded wonderful to my son. We answer their questions, and then they just go on to play with him in a normal baby kinda way. Way to go OP momma! Good for you for wanting to teach your ds right!!!!!!!! You are a good momma!!!
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#21 of 29 Old 03-12-2007, 10:22 PM
 
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My 10-yr old daughter uses a wheelchair; my 8-yr old son has Down syndrome and autism. Everywhere we go, we do not blend in with the crowd! Lots and lots and lots of stares, sigh.

I appreciate it when people treat my kids like they would treat any other kid, even if, as a pp noted, my son doesn't act like he hears them. I don't mind respectful questions, as long as the conversation doesn't open with them. I understand that people tend to be curious about things that they're not familiar with or that they don't understand, and as long as a person demonstrates their ability to see my kids as *kids first*, I don't mind satisfying their curiousity. It might make it easier on the next "different" kid that that person runs into.

And I really don't mind people asking me if they can help! It sometimes stuns me to notice people watching me struggle to open a door and get Michaela's wheelchair over a threshold, while trying to hold onto my 2-yr old and a bag of groceries, and they just stand there. Or when I'm trying to convince Gabe to come along to the car while Michaela is struggling with a ramp and said 2-yr old is heading off on a run toward the parking lot. I don't know if they're afraid of offending me and damaging my self-image of superwoman, LOL, or if they're just a little clueless. Or just plain rude. But, I think that it's entirely within the realm of Common Courtesy to simply ask, "Can I give you a hand?" if you see someone whose kids has some "difference" and who is obviously struggling. Those folks who have stopped and asked have just made my day .

OP, thank you for your kindness and your willingness to learn; I highly appreciate it.

Joni : and kids, incl. Michaela, 10, spinner in purple wheels, and Gabe, 8, Ds and autism (and lover of all things musical and moving)
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#22 of 29 Old 03-12-2007, 10:29 PM
 
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We prefer it when people ask questions, it is an opportunity to educate one more person. I distinctly remember some kids that were trying to play with MJ at Disney World and their mother pulled them away and said, *we don't ask questions about the disabled* MJ was crushed and I just burst into tears, I felt like that woman though MJ was a leper or contagious or something...it was awful. As long as questions are respectful and coming from a place of truly wanting to learn, I encourage them.
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#23 of 29 Old 03-13-2007, 12:12 AM
 
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I always get asked what's wrong with Eli eventually..and I say, well he's autistic and I get the "But he looks fine" answer..that is somewhat hard too..so sometimes I just say he's shy or something.
Yeah, I love that one. : First of all, if he "looks fine", why did you ask what was wrong? : Secondly, I wasn't aware autism had identifying physical features, so what does how he "looks" have to do with it?

I also hate:
-- "Oh, all kids do that!" Well, maybe, but generally not to the extremes that Aidan does. I'm not inexperienced with kids. I've got a fairly good grasp on "average", thanks.
--"Oh, yeah, I know all about that, my cousin's sister's friend is autistic!" Autism is reaching epidemic proportions, I know. I know almost everyone knows someone affected. But there's a difference between sharing your story and assuming you know what my daily life is like, or what's best for my child. Look out for that line....oops, ya just tripped over it...again.

Every special need is different, every kid is different, every parent is different, I don't think there's one "right" way to act. But my wish list would be: 1.) BELIEVE me when I say "he's autistic", "he doesn't talk very much", or "he can't do that". 2.)Don't assume I'm a cruddy parent because he's eating Skittles, or throwing a tantrum. Trust that I'm doing the best I can. 3.) If you want to know what's up, just ask...politely of course!
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#24 of 29 Old 03-13-2007, 04:16 AM
 
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I feel called to start by sharing that some years ago, I parented a severely delayed teen boy with many behavioral challenges in a long-term foster placement. In addition to everything else (and I am not implying this is a special need as we typically think of them), he was transgender. When you are a young mom walking through the grocery store with a teen boy dressed in girls clothes who towers over you by about a foot and a half, and he is calling you "mommy" and falling on the floor to temper tantrum like a two or three year old but also using swear words as he pounds on the ground where he is lying and crying for a toy doll...and you are doing your best just to get out of the store with him and all your week's groceries (and you know you can't just come back later on because it is impossible to get an appropriate babysitter for your 15 year old child who has so many needs and your dw and you still have to work and keep food on the table)...you learn a lot about the human ability and inability for compassion.

Anyway, I have two children who "have special needs."

With my one year old dfd, you wouldn't become aware of her special needs unless you knew her very well and were at least vaguely familiar with such needs. In fact, some of her needs cause her to be an especially charming, overly social child. It might seem endearing to you, and you would never guess that some of these characteristics are the result of "special needs."

With my not quite-two-year old ds, you might notice some of his unique characteristics before you even interact with him (excessive drooling, slack jaw, etc.). Even if you didn't catch on based on his appearance, you would probably get a "different" feeling after interacting with him for a moment or two, or if you ask me his age, you might immediately notice that he has developmental delays. Because my ds does not make a whole lot of eye contact with his big, beautiful, deep brown eyes, and because he signs for the most part instead of speaking with his mouth and vocal cords, and because he will appear not to hear and understand you, he may not capture your attention.

Both of my children are beautiful and have something special to offer. Both have things they are good at and enjoy.

It can be painful to watch the way people ooooh and aaaah over my sweet gerber baby dfd and either ignore my amazing ds or add a simple, "Oh, and he's cute too" or "he sure is a bundle of energy," while nodding in the direction of ds after spending several minutes complimenting dfd. (And it is even more painful for me, though folks would have no way of knowing this, because the very things that make dfd so charming are also the same things that result from and cause great pain for her.)

My dw and I have occassionally half-joked that our ds is the "world's most underestimated kid." People just can't seem to see his beauty and how amazing he is.

I don't mind answering politely asked, repectfully phrased questions from a friendly person, if they feel they need the information to appreciate or interact with my son, or if they are another parent of a child with special needs trying to connect. I am very matter-of-fact and open about my children and their special needs (except, in the case of foster children, as bound by law and fostering ethics). However, I have to note that such questions do seem to me-- to some degree-- an invasion of my childrens' privacy. Why do people *need* to know these things? Why should my son have to have his brain explained to so many people? Or have people discussing his disability all the time. Why can't people just interact with my children as human beings, "unique like all the rest."

Like most parents, I really appreciate when people interact with my children in a friendly way with smiles on their faces...and like other parents here, I appreciate when they do this even if my ds doesn't acknowledge them (in which case they can always chat with me about what a joy he is if they don't feel like they can continue interacting with him). I appreciate when they recognize the strengths of both my children. I appreciate when my children are free to be themselves without judgement, assumptions, or stereotyping. And I essssspecially appreciate when they guide their own children toward positive, meaningful interactions with my children...as my kids may not behave in ways your children know how to handle (it is great when you guide your children through it as I also struggle to help my kids interact in ways that are socially "acceptable").

I'm pro-adoption reform, but not anti-adoption.
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#25 of 29 Old 03-13-2007, 04:23 AM
 
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Oh yeah, I forgot that I also wanted to share this quote:

This is from Barbara Gill, Changed by a Child, as quoted in the book for faith communities called Welcoming Children With Special Needs written by Sally Patton.

"We all need people who see us as good and competant parents, and who do not blame us for what is 'wrong' and difficult about our child. We all need places to go where people can look past the fact that our child doesn't talk or doesn't respond to our directions. We need people who admire his physical beauty and his curiosity, or who recognize how clever he is in his mischeif. We all need to go where our family is accepted as it is, and delight is taken in us and each of our children. And we all need people who show us the way, leading us by their example, to the confidence or pride we have been struggling for. An ounce of this kind of love can offset a pound of criticism and hostility. In its presence we open like a day lily to the sun."

I'm pro-adoption reform, but not anti-adoption.
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#26 of 29 Old 02-23-2014, 12:20 PM
 
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Want to introduce myself and don't know if I'm in the right "section"
Anyway, hello! I'm a mother of a 6 year old boy on the autism spectrum - no definite diagnosis after many years...
Looking for advice add I've read others with similar issues. To keep it short, I'm dealing with a non-verbal 47lb child that is not potty trained and becoming increasingly aggressive.
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#27 of 29 Old 03-09-2014, 03:08 PM
 
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Hello and welcome!  I am new to this site as well.  Did you get any replies or help to your post?  I have a 6 year old son on the spectrum who was non-verbal, and is just potty training.  Anything I can help talk you through please ask.  I will try.  :)  Take care.

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#28 of 29 Old 03-11-2014, 06:45 AM
 
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A program I would recommend that you look into is by Dr. James MacDonald. He wrote "Communicating Partners" and his approach will give you a new way to look at your child. His approach is similar to many other relationship based-approaches and his therapy techniques are done by the family during the daily routine. He has a group (I think it is a Yahoo group?) where he sends daily tips to professionals and families. If you Google it you will find good information.

I hope you find this helpful!

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#29 of 29 Old 03-28-2014, 12:52 PM
 
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My husband and I adopted our daughter when she was 15 months old out of foster care.  She was in a bad situation, many delays, etc.  Immediately, we got her into OT, PT, and Speech 4x/week.  Fast forward 9 years.  She's been in a self contained class in the public school, and no longer receives services.  Although she's a pre-teen, and very tall/developed for her age, she still has the mind of a 6 year old.

 

In addition, we adopted trans-racially.  So, not only do we get 'looks' from us being white and her being african american, but usually she's carrying a baby doll and reading a board book. 

 

The amazing part is how open people are when we are approached with questions (or many times I offer up information).  I go into her classroom often, so kids know who I am, etc.  And, if we are addressed with rudeness (and sometimes it comes from extended family!) we just consider it their ignorance and try to explain...

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