Ask a Special Needs Parent

Do you know my wonderful friend Ellen Seidman? She blogs over at Love that Max about her eight year old son, Max. Max is big brother to Sabrina. He is mischievous and sweet and has the most delicious brown eyes. He reminds me of my Evan. Except, unlike Evan, Max has cerebral palsy.

Ellen and I have long talked about collaborating on a post. There are so many things that our readers (and we) can learn from each other. The timing seemed right this week, as we are both working with P&G on coverage of the Special Olympics. Here is our (genius, if I do say so myself,) plan:

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I’m asking you guys to post questions regarding special needs kids in the comments. You know the ones– the stuff you’ve always wanted to ask their moms, but have been afraid to broach. Ellen’s readership is largely comprised of special needs parents and they will come over here to answer your questions. In return, on Ellen’s site, they will post in her comments what they’ve always wanted to share with typical parents (yes, that’s the correct terminology.) Cool, right?

So, what have you got? Always wondered how to respond when your child stares at a disabled child? Ask. Did you just get a diagnoses and don’t know where to start? These are your people. Got questions about their daily lives? Put it out there. We’re breaking down the barriers and looking forward to an open and honest conversation. And, after you ask your questions here, remember to visit Ellen’s blog to see what her readers want you to know. Let them know that you’re listening and let’s keep the discussion going.

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We think this can be a wonderful way for us all to learn a few things and come together over what we all have in common: Enormous love for our most amazing children.

About the writer

What started as an innocent on-line baby book to chronicle Jill's stay-at-home days with her children, quickly transformed into a vibrant community of parents, brought together by a common theme: Parenting doesn’t have to be perfect. Learn more here.

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Angie 10 months ago

My daughter asked another child if she was special needs and the child got upset. Then the mother got upset. I was not present, this was at after school care on campus. My daughter was actually trying to be nice and was asking her her name, what grade she was in and then if she was special needs. The teacher brought it to my attention and suggested I talk”to my daughter about it, but I don’t think she did anything wrong. My daughter is almost 9 and we’ve had the conversation about everyone being different and not to stare or make fun, etc… It’s not like she said what’s wrong with you, then I would understand and we’d have a problem. I personally try not to make a big deal of things like this because it only draws more attention. My daughter is now likely to avoid this girl in the future because she will be afraid of upsetting her. Please let me know if you think Im on the wrong page.

autism bracelet 11 months ago

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Lori D Martin 1 year ago

Barbara I am working on my special education TA certification. The class I am presently taking I am writing a paper on how having a family member with special needs effects family members. I know there are a lot of challenges but, I also know that there are many rewards. Would you mind sharing your thoughts on this subject with me?

Lori D Martin 1 year ago

I loved what you said about the way the server treated your son. He treated your son with the respect he deserves.
I have some physical limitations myself and I can’t tell you how many times people ask questions through my husband instead of just asking me.

Thara Ravishanker 2 years ago

I prefer/like questions better than the stares. People are also welcome to tell me my daughter is cute.. I NEVER get tired of ooh your daughter is cute ever.

Prickly Mom 3 years ago

Great answer! I had/have a facial defect that wasn’t fully camouflaged until I was 5, and I’m still in therapy (at age 42) dealing with the “what’s wrong with you” questions I got as a little kid. I think we as parents need to redirect our kids’ curiosity in a way that won’t hurt feelings…and smiling and introducing themselves, THEN asking (maybe, “why does your face look like that?”) is a great start.

Claudine 4 years ago

Jennifer, there are days as a mom to an 11-year old boy with autism that I want to snatch him from the mainstream school/class he’s in. I want to protect him from the bullies, I want him to have more focused attention to be able to get someone to teach him in a way that he thinks and understand, I don’t want to make him have to “adjust” to the way everyone else acts/thinks. But I know overall that exposing him to all these other things are important and necessary. The world isn’t going to change in time for him, to fully accept him as I wish for every day. He’s going to have to learn to live in this world because I know how successful he can be. He has as much to contribute to this crazy world as any other person and may be our future Einstein or Bill Gates. I definitely don’t want to shelter him but share him with the rest of you. He’s truly an amazing person and teaching the rest of the world to adjust to him is just as important. Diversity in all forms is a wonderful thing and showing our children how to appreciate the various ways it’s exhibited in this world is crucial for success for all. So he has as much to teach the other kids as learning a math problem, maybe even more.

Stacey 4 years ago

I had cards printed from an online website that state that my daughter has autism. It also states that she is not trying to be babyish or “bad” but that she gets easily overwhelmed from visual and auditory stimulation. Whenever my daughter starts to have a meltdown in public (she is 9) and I get dirty looks I just pull out a card and hand it to the person who is glaring at us. I have not gotten a single rude comment since having those cards printed and I sometimes will get a sympathetic look or two!

MarfMom 4 years ago

I have to respectfully disagree with the idea of treating your kids like everyone else, at least for the issues my kids face. My kids ARE different, as are the kids of a lot of parents chatting here. One of my sons has autism, and the other has a life-threatening connective tissue disorder (a mostly invisible disability). My son with autism will go through sensory overload if I take him a lot of places that other kids his age can go to. My other son could die if he participated in many sports or other activities that healthy kids ca do, even though he looks pretty “normal.” As parents, we need to understand and accept our children’s limitations because neither they nor we are going to be happy if we constantly compare them to what “all the other kids” are doing and try to force them to do that.

I believe in challenging my kids and holding them accountable for what they CAN do, and helping them to be able to learn and grow. Their disabilities are explanations, but not excuses.

MarfMom 4 years ago

I totally agree! I actually wrote a post called Please Don’t say I’m Sorry about my second son’s Marfan syndrome diagnosis: . Basically, when someone says “I’m sorry” about it I feel like in a way they are saying those of us with special needs (I also have the syndrome) are “less than” everyone else. Plus, I think there are advantageous aspects to the syndrome, and to autism, which my first son has.

Jenn 4 years ago

We have an almost 5 year old son who is vibrant, amazing, funny, non verbal and happens to also have autism. One thing that I would suggest you NEVER do is apologize. When I tell you he has autism, do not say “I’m Sorry”. In saying sorry, you are insinuating that because he has this, that we are at a loss. Though our lives are very different than yours, and yours different than ours, we are happy. He is not dead. We didn’t lose some lottery, he was just born different. I have to say that is one of the biggest pet peeves that I have, and people don’t even realize that they do it.

Raye 4 years ago

Funny, love the button idea! My son who is in a w/c has a tshirt that says ” keep staring I might do a trick”

Raye 4 years ago

Yes! Out of 7 we have one child without special needs! And she’s 16, worse, way worse! Everyone always says I don’t know how you do it. But to us it’s “normal” and the joy the kids bring us is amazing. We are lucky and have the best kids ever! But I am a firm believer in this statement “it takes a village to raise a child”

Raye 4 years ago

A big help to me is a friend stopping to visit, hang out my kiddos while I take a nice long shower! All by myself!

mominrome 4 years ago

IT’S A GREAT POST .
And your last sentence is really inspiring for me.

NOt a mom yet. But I will in 5 days ! :)

MarfMom 4 years ago

I don’t think it’s insulting or presumptive. It’s a nice offer, and people can accept or not accept. If the opportunity were given to me I’d probably take it. :-)

Katherine 4 years ago

My brother-in-law is a developmentally delayed adult. My husband’s life, obviously, was greatly effected and enriched by his brother’s disability. My children have a fabulous relationship with their uncle, and love him dearly. He now lives on his own in a group home setting with other adults of similar functioning levels. Still, as an adult, he is faced with many challenges – but he is happy.

Because I have young children, I encounter/read stories mostly of other mothers that are close to my age, with young children, that seem to be just at the beginning of a special needs diagnosis, etc. I often want to suggest that someone talk to my husband – he is not a parent of a special needs child. But, he is a parent, and he grew up down the hall from a younger brother with special needs. He is a vault of 30 years worth of stories and experiences, both good and challenging.

I rarely (if ever) say anything, because I get all twisted up and conflicted about whether or not it is appropriate or not – or whether asking someone over to hang out and talk would be wanted, or insulting or presumptive?

Andi 4 years ago

Great answer, Julia! I actually read this comment yesterday but wanted to “sleep on it” before I responded – I knew what I wanted to say in my head, but wasn’t sure it come out as thoughtful and kind as I hoped. You did a great job explaining what I was thinking!

There are a number of reasons why mainstreaming is beneficial, but the one universal beneficial to all children, typical or not, is that school should be somewhat of a microcosm of the adult world. Unlike my parents’ generation, people with disabilities are no longer shut away in institutions or prevented from going to school – they live and work among us. It’s good for everyone if these interactions occur from a young age, because the non-typical learn how to navigate the real world, and the typical learn that non-typical is still normal.

When I was growing up, the kids with intellectual disabilities, severe CP, etc., went to my school but were segregated from the rest of us. As a result, I was intimidated and uncomfortable around them, with one exception: a young man about my age with an intellectual disability who also went to my church with his family. He was (and still is) the kindest, gentlest, sweetest person I have ever known. My life is definitely better for the experience of knowing him, and his presence, in my opinion, is part of the reason why I never was depressed or distraught after learning of my son’s Down syndrome diagnosis. I wonder what other joys I missed out on by never getting to know the other kids.

Julia Roberts 4 years ago

Jennifer, thanks for being sensitive in how you are asking the question, which I think is a great one! There are a lot of reasons for being “for” mainstreaming for both kids with special needs and kids with typical development.

From my side (as a special needs parent) it’s extremely important for my kids to be around kids with typical development and behaviors; both for modeling (your kids can teach mine!) and also because out in the world as they grow up they have to learn how to fit in a world that is largely “typical” thinking/acting. I also think it’s vitally important – possibly more so than my kids learning from yours – because it helps teach tolerance. If kids who are typical aren’t exposed in everyday life with with learning differences, physical differences, and developmental delays how can we possibly expect them to be compassionate later in life, when they’re going to be the ones who are in charge of acceptance? One of the most beautiful things we can give all of our kids is exposure to experiences and mainstreaming helps kids with all abilities learn how to live and thrive together.

I do however, understand your concerns about disruptive situations and have a child like you describe (in his past anyway) but instead of isolating him, our school worked with us by giving him more support (he was medically fragile, kidney transplanted, then clinically depressed, then suicidal/raging over a period of two school years) instead of pulling him out of being around other kids. In fact, his inclusion was the only thing some days that helped him feel normal/alive/connected and very much aided in his recovery while he fought his way back to living.

By doing so, our school taught a lot of kids, parents and teachers how to support instead of shun, how to help instead of ignore, and tolerance and compassion. Did everyone agree with the school’s approach? No. But their choice helped a lot of people, not just my son.

Renee 4 years ago

Down syndrome support wasn’t helpful for me at first because my son wasn’t like the other kids. I was the only parent helping their child play. I later found out that was because my son has autism too. Dx at age 14 due to lack of propper screening of dual Dx. Anyway, now I found that the minigroup I started for the more hands on kids to be very helpful although we don’t get together as often as we’d like. Also finally found good support at church. Seriously the BEST support are warm people who “get” it although they don’t live it. NATURAL SUPPORTS! So jsut finding to SAFE places. For us is was the pool, park, aquarium, favorite restaraunts, and church.

Renee 4 years ago

I have a resourse tab on my blog. Also her local down syndrome association probably has an infant support group and probably reading materials.

Renee 4 years ago

on the playground it is really helpful to walk and talk. I often felt left out when my son was younger and more active because all the other Moms were talking and watching their kids. I had to assist mine. I’m not saying follow a stranger around the playground but if you are out there with your child and we are out there with ours we are bound to run into somebody at some point and start a conversation on the fly. Also by the other Moms being out on the playground you can encourage you kid(s) to play with mine.

Renee 4 years ago

Better to conversate about something else like a normal conversation. Likely the parents will meantion it at some point because we do know that folks are wondering. I love being at the aquarium and the ticket sellers sometimes ask my son if he’s excited to see the museum. Or a waitress who asks my son what he wants to drink. And we tip these servers very well. I’ve only ever had a server who continually though the meal spoke to my son. Many will often start talking to me or my husband after they find out that my son can’t talk. But this server would ask every question to my son and give him eye contact and wait a reasonable amount of time before turning to Mom/Dad to hear the answer. We were interpreters that day.

Renee 4 years ago

This is what I tell my two typical kids. “Don’t stare. Say Hello.” or “Don’t say that, it’s rude. Say Hello.” The I apologise to the person for my child’s comments. My daughter once commented on a fat couple when she was about 5 and then they walks to their car with the handicapped plates. I was so embarassed. I definately had a talk with her about not commenting outloud because so many people have hidden disabilities (MS, fibromyalgia, chronic fatigue syndrome for examples.) That explanation about developmental delays is fine. We are all still learning aren’t we.

Barbara Bader 4 years ago

I am like you. I prefer sites that have realistic stories and sarcasm and humor used as a coping mechanism instread of chicken soup for the soul type sites which do not always paint a realistic picture of sn life!!!

Barbara Bader 4 years ago

I have two special needs kiddos and my youngest stares at people a lot. I have taken the same approach as you. When I catch her staring, I say, “why dont you say hi to her/him”. She has learned this well enough that if she gets caught staring at someone BY the person she is staring at, she will now smile and say ” HI” she almost always will add, ” I like your wheelchair/earrings/shoes, etc” Its a great conversatino starter. I also do it in reverse. IF we catch people staring, we smile and say hi, unless we are in meltdown mode, of course! :-)

Barbara Bader 4 years ago

LOVE You sentiments Andi!! I love when people try to help but ALWAYS ask first. Part of our job as a parent of a special needs kid, is to sit back and watch our children struggle at times so that they can learn. We are not being cruel we are trying to help our chidlren learn new skills. Typical children often take less time and effort to learn basic skills so helping them is not a big deal. IF I tried to help my 4 year old with her weaker skills, she would too readily learn to rely on others to do what she struggles with instead of learnign to be as independant as possible.

Barbara Bader 4 years ago

Another way to get brownie points, ask what neat new tricks my child is up to and then get excited with me. So what if my child is 7 and just started wearing big girl panties last week. To us IT IS HUGE!! CONGRATULATE us on reaching milestones, even if it is not at a typical timeframe!!

Barbara Bader 4 years ago

I agree, the people who seem to take offense at offers of help, seem to be families who are in denial and dont want others to know something is different. I agree with the above commentors but I also want to add, be friends with us. Invite us over to play, knowing all heck may break lose if our chidl gets overwhelmed but THEN invite us over again, AFTER seeing the rougher parts of the issues. Having speical needs kiddos can be VERY lonely at times, for the parenst AND the kids. Overlook our differences adn chat with us, interact with our kids, but by all means DO not get offended if it takes us a while to actually make it to hang out with you. it is not personal, a lot of of parents have to plan things accordign to our childs moods, LITERALLY!!! So be patient with us. We want your friendship, it just takes time!

Barbara Bader 4 years ago

Some of my family members keep telling me how sorry they are for me, my husband and my children because both of our chidlren are special needs. WHen they take pity, i like to point out that if they knew how happy and loved my children are, they woudl be jealous of us, not sorry for us!!

Barbara Bader 4 years ago

First of all, you are correct in that asking “whats wrong” is not a good start. WE do not see our childrne as “wrong”. Sometimes I try to chat with others when i know their children have issues and I will generally ask “whats her diagnosis, mine is… ” or ” I was wondering why she “walks/talks/drools” like that? Never ask what is wrong. I LIKE it when people ask nicely what is going on. It gives me a chance to teach someone about my duaghters Autism and a chance for my daughter to interact as well. ALWAYS make sure you say hi to the child first, “flirt” a little with the child if appropriate. See the person first.

MarfMom 4 years ago

I’ve thought about one that says “My kid is awesome, it’s the autism that sucks.”

MarfMom 4 years ago

The director at my son’s autism school just recommended that book to me today. Glad you found it useful! I can’t wait to read it!

Jennifer 4 years ago

I haven’t seen this question asked and I may be too late to get a response, but I’m going to ask anyway.

Why is mainstreaming special needs children in the classroom important? And at what point do the special needs outweigh the typical needs?

I had never even thought about this until my daughter started school last year. She had one child in her class that was very disruptive (and not in a they need to wash their hands after each meal way). On a daily basis his behavior would put a stop to the entire class while the teacher tried to manage his issues. (I may not have worded that the best way. Sorry.)

I truly want the best for every child. But I also want the best for MY child the most, which I think is probably what every parent wants. At what point should a special needs child need to be educated in an environment more conducive to his/her learning needs.

I really don’t want to offend anyone, but I would really like to know the reasoning behind mainstreaming.

Jennifer 4 years ago

I think this type of person is universally annoying, whether you have typical children or not.

Jen 4 years ago

I am the step-mom of a 6 1/2 year old who is diagnosed with Severe Autism. Thank you for sharing the stories of issues with your children in public. It makes me feel not so alone! On the outside, Max looks just like any other kid. He is severely delayed, and when we go to places like the store, I keep him REALLY close to me with his hand on the cart. He will wander off and I really do not want to chase him down, and also run the risk of him getting into things and/or breaking things. Folks give me funny looks when I am constantly telling him to hold onto the cart right by me, etc.
He also has some problems with self-injurious behavior, and I always worry that someone will call CPS and report child abuse or whatever.
Don’t get me wrong. I love my kiddos even though we have challenges. Sometimes it’s just challenging, and as a step-parent, I worry that there will be more repercussions (sp?) because I am the step-parent.

Ceci 4 years ago

I recently attended a presentation about a local organization that provides day services to adults with special needs. They are locally supported also as well as goverment funded. The adults all have jobs at the center and have a role. It’s an amazing facility and seeing the type of support offering families and the knowledge that more facilities are opening is great.

Ceci 4 years ago

YES!!! Please do! I love hearing about my friends issues. If they weren’t telling me I would feel like they were walking on egg shells around me.

Observation 4 years ago

What I do is, without worrying about what anyone else thinks, let everyone know that my child’s bad behavior is a result of a medical condition. How I phrase it depends on what’s happening, but I make sure there’s no question that he’s profoundly delayed, stronger than he looks, and has self-control issues. There comes a point in time where you just can’t worry about how others are going to react when you are doing what you need to do, but if you think people are going to misunderstand or make your life more difficult, cut them off at the pass, bellow an explanation, however brief, and don’t give them room or an excuse to misinterpret. That’s my method, anyway. I think it works pretty well. You’ve got to learn to throw shame to the wind, though. Believe me, if you do it once, it gets easier the next time. After a while, you’ll be a pro and it won’t phase you.

It is important that you not allow strangers–people you don’t know, don’t care about, who do not care about you, and aren’t on your Xmas or other Holiday card list–to make you feel bad about yourself. Don’t wrap your self esteem up in the opinions of unimportant others who might look at you sideways. Don’t feel any sense of inadequacy or shame–you aren’t doing anything wrong, in fact, you’re keeping a challenging child safe from harm, including possible self-harm. I do think that if you let everyone around you know what is going on with your child in the briefest way possible–even on the run if need be–it is helpful. “He’s having a meltdown, he has sensory difficulties” or “We’re trying a lower dose of his medication, looks like we’ll have to go back to the doctor” or even the all-inclusive “He’s mentally ill, but he’s my baby and I love him even when he acts like this”–whatever it takes to get these people off your ass, and either helping or getting out of your way. When you find the right phrase that turns a harummph of disapproval into compassion, stick with it.

Look, you have to do what you have to do to protect your son. In an ideal world everyone around you would automatically “get it” and surround you with love and help and healing light and maybe a latte. But we don’t live in an ideal world, and our world is full of both well-meaning types and jerks. Don’t let the busy bodies get to you. Don’t allow them to ruin your day. You and your family are NOT like many others, and that’s OK. Own it, do what YOU need to do, and hold your head up while you’re doing what ever you have to do. Make “illegitimi non carborundum” your motto. Believe me, it works. It just takes practice. Hang in there.

Ceci 4 years ago

I personally like when people talk to me for a minute and either ask me something specific such as asking nicely about her hand brace or foot orthotic. I’m pretty open and we’re also trying to teach our daughter how to react to others. I really hate the “wrong” word though. I much prefer what’s her diagnosis because this is one thing about her not who she is.

Nicole 4 years ago

I’ve really enjoyed reading both blogs. I think this is a beautiful idea. I have often wondered how/what I will say or do when my kids ask a question about someone with a disorder or disability. I haven’t read all the comments on both blogs, but I have noticed most of the mom’s of special needs kids just want us to ask them what’s wrong. However, I would feel extremely awkward asking “what’s wrong with your child?”. So, my question is, what is a good way to word it, so everyone is comfortable, and not hurt or angered?

peggy 4 years ago

Um I don’t even think it’s appropriate for people to want a diagnosis it’s nobody’s business but those you want to tell. Kids okay, I understand, they’re curious, let them ask and parents of those kids, let them ask and be answered. But for the most part treat everyone as if everyone were created equal or born without limitations. To the parents raising those children and to strangers wanting to know more … let your children ask, let them learn, for everyone else, treat those kids as normally as you can! No I’m not raising a special needs child I am one or was. The best thing my mom ever did for me was to treat me like my sisters, I wasn’t different, I grew up doing most everything they did and am independant to this day because of her and what she taught me. Had special needs kids in my daycare and what I taught them and their parents is to treat that child as normally as possible and to not do everything for him/her. Make them as independant as they can be!

Pam 4 years ago

I should also explain that my oldest two children are very close with children with Autism, Tourrettes, and another genetic disorder, that the name fails me at this time. We have always encouraged our children to befriend the child and get to know them before we answered any questions.
We have always just explained that all people are different and that some kids just have harder times dealing with certain situations that may seem typical to them.
So my oldest son had a very hard time when his friend went to a different school program at the end of the year to deal with some of the difficulties he was having with his Autism .
I guess it helps to have friends that have multi capable children and know my background with education. I would never feel sorry for a SN parent because they have some of the best kids out there. But as a parent with a “typical” kid, I will keep encouraging my kids to become friends with anyone and embrace the differences.

Ellen @LoveThatMax 4 years ago

I have learned not to judge any sort of “different” or erratic behavior on the part of children. I mean, my 6-year-old, who has no diagnosable disabilities, has THE craziest meltdowns sometimes.

JourneyBeyondSurvival 4 years ago

I too worry about this. We plan to have a trust fund, but there are so many expenses with each regression our daughter has. Needing a wheelchair requires a vehicle large enough. There goes the down payment on our future home. Soon we shall have to buy another vehicle and equip it to have a ramp and tie downs requiring another down payment. There are therapeutic sensory accessories. We haven’t been able to save up for the communication devices. Then my husband lost his job…

I worry about her future a lot.

JourneyBeyondSurvival 4 years ago

My daughter’s condition is sufficiently rare that many of the moms on the network I belong to have printed informational business cards. It works for pharmacists, teachers, and those lurking starers that belong in a fishbowl.

I’ve been thinking about getting them for those days that I don’t want to be brusque but I’m too tired to answer 1,000 questions for half an hour.

Sunday 4 years ago

Yes, I totally agree Andi! Its all about the attitude of the person using it.

Tamika 4 years ago

Mine does that ALL THE TIME and they only live 40 minutes away. Drives past my house going only who knows where but never thinks to stop by. She didn’t want to attend his baptism so we have been postponing for 8 years. I guess I should also mention that mine is an interracial marriage to boot. Just more fuel to throw on the fire!

Tamika 4 years ago

Be proud Kelley! Our kids rock just they way they are. They may be a little challenging at times and I’m in no way discounting that but just think about that random act of love that they give us in their own little way. Dylan didn’t say mom until he was almost six. Now sometimes, he’ll just walk up to me, crawl in my lap, and say “I love you mom”.

…going to dry my eyes so forgive my spelling errors since I can’t see anything at this point.

Andi 4 years ago

I know I said I wasn’t going to name the family member, but…it’s my MIL, too. She lives over 300 miles away, but she came to see him twice within his first six weeks of life, then not again until almost nine months has passed. He’s now almost 15 months and we haven’t seen her since January (made worse in my mind because I’m almost 100% certain that she, my SIL, and nephew were at the beach within 45 minutes of us all last week – they’ve been doing the same beach trip for almost 15 years, and didn’t bother to call us last year when they were down, either – that trip was confirmed).

I really don’t get it.

Amanda 4 years ago

My MIL we avoid at all cost. She thinks my son is just being a brat. She can’t handle him and well I can tell you, the time she tried smacking his hand…I’ll about smacked her. She’s missing out on my son and we don’t have her around because she favors my daughter. Well I’m sorry, my kids are equal, one may be normal according to societies standards but the other one is normal according to our familys standards.

Andi 4 years ago

This is something that I hear other special parents bring up a lot, but it’s not something I face on a regular basis – not sure why that is. I’ve also heard other special parents say that medical professionals or others said things to them like “your child will never do X or Y, will always be a burden, etc.” Mr. Andi and I discussed the other day why that might be, and while we didn’t come to a conclusion, we did wonder if it is because people take their cues from us. Maybe we seem like we’re super-positive, or that we won’t take any crap, or something…not sure.

Andi 4 years ago

Agree with Ellen – in the first few weeks after my son was born, my biggest concern was that he would be a burden to his already-challenged sister when I was gone. I don’t worry about that anymore – she loves him dearly and, despite her independent spirit, has repeated time and again that she never wants to leave her family because she loves us so much. One of the many lessons that I learned in the first four years-ish of Sarah Kate’s life is never to look too far ahead.

Tamika 4 years ago

Try a t-shirt! There are so many “smart” shirts available even for the kids to wear. Some of my favorites for Dylan (autistic) say:

Autisim Rocks! (…and flaps, and spins, and rolls)

I’m Autistic what’s your excuse?

I’m with neurotypical ——>

There are many out there that can help take the sting out of the rudeness of others.

Amanda 4 years ago

I remember the first time, I saw a parent with a child who had an invisible disability. I had to walk outside from Church because my child was having a melt-down. Well her child was in the same sort of a chaos but dealing with different needs. I just went up to her and said how do you do it, I don’t know if I can. She said you just have to. I was so worried, I’d offend her but the reality is, I was finally relieved to see someone who had a child, that the world stares at because I thought I had to be the only one (I knew, I wasn’t but … I don’t know to explain it or what I’m saying, it was just finally a comfort to know someone understood).

Andi 4 years ago

My daughter has what’s typically a visible disability, but one place it’s usually less visible is when we go to Walt Disney World. Before my son was born, I took by myself most of the time because Mr. Andi wasn’t a fan and we could go more often if we went without him (cheaper!) I always let WDW be a braces-free zone and as long as she was small enough I’d use a stroller to push her around instead of a wheelchair (easier to manage). It’s not unusual to see bigger kids in strollers, so I know that most people didn’t notice. However, I did get a pass to use the stroller like a wheelchair, which meant I could take it in places that normally strollers aren’t allowed. I can’t tell you how many times people have made loud remarks (clearly intending me to hear them) about it – like they think I’m breaking the rules. Very aggravating! Some of the wheelchair access points at the Magic Kingdom are actually through exits, so there’s also the occasional comment about how stupid I am to be going in the exit.

Although I’m mostly immune to it now, I am still always on guard when we visit WDW. It’s the only bad mark on a place that I love, love, love.

Tamika 4 years ago

Andi – You are so right. My mother-in-law never bonded with my son because of his autism. She tries but he can sense her hesitance. At first, I thought it was just me but my sister-in-law said she was the same way with her son who is also autistic. They really lose out on knowing great kids!

My Dylan (Dyl Pickle as I love to call him) has been blessed with faux grandparents as well. They love him to bits and are always advocating on his behalf, even when it’s not warranted against something I did.

Finding blogs like this always help too so that you remember you are not alone!

Andi 4 years ago

Love the button! I may have to try this idea. I keep thinking I’m going to do the business card thing, but with two kids with two completely different diagnoses, I think I’d need a bigger card!

Andi 4 years ago

Bingo, Amy! I don’t want people to be on pins and needles, fearing that they’ll upset or offend me, but please try to be a little bit sensitive about the subject matter.

Amy 4 years ago

It bugs me depending on what their meaning is – if it’s “I’m sorry your kid is ‘broken'”, then that is no good. If it’s “I’m sorry you and she both have these additional challenges”, then that’s okay. I’m not *happy* my daughter has cerebral palsy – like any parent, I want her life to be as easy as possible, and her only worries to be silly ones. But she’s so dang cute, so that more than makes up for it. =)

Andi 4 years ago

Your comment about family members and friends really hit home with me. Everyone is nice, and they make the appropriate responses, but we can feel it when they aren’t “feelin’ it” with my kiddos. A family member I won’t name but who is a very close relation has been completely weird ever since my son (the one who has Down syndrome) was born – she was never that way with my daughter (who has cerebral palsy), interestingly, which I assume may be because she didn’t realize “The Deal” until Sarah Kate was older, very interactive, and obviously intelligent.

You know what, though? It’s her loss. During the same time period, we gained a new twosome (faux-grandparents who don’t even live near us!) who stepped in to take her place. The faux grandpa bought a Spread the Word to End the Word T-shirt and awareness bracelet to wear just because of my son.

So, as you said, the changes are tough, but they are for the better. I see people for who they really are now – and I can see that all of the “typical” moms who are posting here, asking questions about our lives, are “good people” – because you care.

Amy 4 years ago

Yes! There are so many things about raising kids that we do have in common, more than you’d probably think. My daughter cries when her sister mentions wanting a toy she is playing with. She throws her food at mealtimes. She whines. She keeps me up at night. I can understand long waits at doctor’s offices. The only caveat is to use common sense. If I’ve just told you that we’re going to need to add another therapy to our already busy schedule, or that my daughter is going to need surgery, *maybe* it’s not the best time to complain about having to bake 5 dozen cupcakes by tomorrow. Or don’t tell me you’re concerned about your 8 month old not pulling up to standing when my daughter is 2 and still can’t sit.

Andi 4 years ago

I remember when my daughter was 2-3 and easily contained, I would see my friends’ typical kids running around like wild things and thank heaven for small favors!

A mom I know who has an adult son with an intellectual disability told me recently that she is a worrier to the point of making herself nutso. She believes that her son was given to her so she would never have to worry about where he was, what he was doing, if he was taking drugs/drinking/having sex.

It’s not all bad!

MarfMom 4 years ago

That’s very true. We’re in the early start system (ages 0-3), so we won’t be paying for it. School districts can be compelled to cover it, but it can be a big challenge, and I don’t know if they can be compelled everywhere. But, there are other types of behavioral therapy that aren’t ABA and it should be easier to get schools to cover those. Even if you homeschool, the school district in which you reside needs to provide services.

Andi 4 years ago

I try to always use “people first” language because I know that others in the SN community (or is it community with SN?…) prefer it. However, I personally don’t really mind it that much when people use labels – what I’m more concerned about is the attitude with which they use them.

Andi 4 years ago

I really, really, really, don’t want to be the Debbie Downer here, but I feel the need to share my own opinion of Kelle Hampton’s site. The birth story is beautiful, as is much of what Kelle writes (and the photographs!), but I ultimately unsubscribed to her blog because it was just…too darn positive! I don’t think my life is tragic or anything like that, but she is so “sunshine and rainbows and unicorns” that it was a little too much for me. I would encourage anyone who hasn’t seen it to definitely check it out, but if you walk away feeling like I did, then she may not be for you. :)

Sunday 4 years ago

I get this a LOT!
When someone says “I’m sorry” I typically say, “Please don’t be. They are happy just the way they are and that makes me very happy.”

However, I also get the question, “Do you have any other children?” I suppose they think its sad that both of my sons have autism and I don’t have a “normal” child to raise. This is harder to respond to because it implies my children are somehow broken. They’re not. They were created by God exactly the way He meant for them to be and their lives have purpose and meaning just like everyone else. I have yet to find a nice way of responding to that question.

Any ideas?

Mama to Baby J and Bean 4 years ago

I’m sorry is one of my pet peeves. I get it a lot and I know you are right – people say it because they don’t know what else to say, but still… It gets to me.

Sunday 4 years ago

That is a great resource Andi! Thank you so much for sharing it.

Sunday 4 years ago

I totally agree with Natalie. I always let the parent know that we’re on the same team and then offer to help.

Sunday 4 years ago

I marvel at the accomplishments my boys have made. They meet milestones late and some they may never reach but we celebrate each one as if we are having a party over it.

Mama to Baby J and Bean 4 years ago

I agree with Ellen. The future keeps me up at bight. A lot. I make a very strong effort to not dwell, though. We are learning about all of the resources available to my son, and planning for him financially as best we can But I can’t let it consume me.

Sunday 4 years ago

To be honest I really struggle with this. Even with all the information about autism in the media right now I still run into ignorant people making truly ignorant comments every day. And each time I tell them my children are autistic and their behavior is not because they are being naughty but because they are in sensory overload. Sometimes they apologize and other times they roll their eyes, shake their head, and walk away.
I have had to learn the tough lesson that I can’t change their behavior. I can only change the way I respond to it.

Sunday 4 years ago

To be honest most days I feel like I am white-knuckling it through the day. With 2 to care for I often feel like I am putting out fires all day and so when the end of the day comes and its time to put them to bed I am completely exhausted and ready to collapse.
This is why respite and time away is SO important. Every parent (whether their child(ren) are special needs or not need time away to regroup and relax.

Sunday 4 years ago

As many fellow special needs parents will attest it is often hard to attend support group meetings because going means finding a caregiver for our child and that can be both very expensive and nearly impossible given most of our children need to be left with someone with a skilled nursing background.
I found Twitter, Facebook groups, and the like to be my best source of support. I follow the #autism hashtag on Twitter and have made numerous friends through its users.

Sunday 4 years ago

I have no problem with my sons being labeled as autistic. However, I do know of a number of parents who prefer the “child first” labels, such as: My son is a child with autism.

Sunday 4 years ago

I completely understand how you feel. I find I am most unrelaxed when I visit a person’s home with my boys. I have to be on high alert the entire time to be sure they don’t get out of the house or get into something they shouldn’t have. We have gone to playdates where one of my sons found a stash of Sharpie markers in a drawer and proceeded to draw ALL OVER her living room! Needless to say we weren’t asked back for a playdate after that.

Sunday 4 years ago

I have two sons with autism and so I know all too well what you are talking about. Meeting with a behavioral psychologist can do wonders in helping redirect the behavior or circumvent it all together. My older son has seen a BP off and on since turning 2 and with each new struggle he is there to help us brainstorm a way to deal with it head on.

Sunday 4 years ago

I like it when someone just walks up and says, “May I help you.” Its to the point and most appreciated!

S Club Mama 4 years ago

Ask her if you can help her unload her groceries. I know I’ve been in the store with my NT (neurotypical) son who is 1 (but a handful) and someone offered to help me unload my groceries. Oh my gosh, it was so sweet. Just don’t ask with pity in your voice but helpfulness. We as all mothers (whether those of special needs or not) need to help one another out!

S Club Mama 4 years ago

The bad thing about ABA is it’s truly expensive and not everyone can afford it. In KS where I live, it’s only private pay unless you have state or military health care.

Kelley 4 years ago

I completely agree with you!

Shelly 4 years ago

Thank you for sharing the Hampton’s blog! Beautiful. Someone recently shared another family’s story with me. Their blog link is below. Such a courageous mama and her beautiful butterfly, Scarlett. http://brandiandchris.blogspot.com/

Kelley 4 years ago

Dear Observation,
I can certainly respect what you wrote, as it’s not the first time I have had someone try to show me the other side of the coin.
This happened almost a year ago and I still find myself wondering if the mom at the park is the one that called. Or the teller at the bank. Or the waitress at the restaurant.
I guess it affected me so much because despite the difficult (sometimes violent) behavior we have endured from our son, I would never hurt my son and I felt accused of that very thing. I thought I was doing the right thing and still was looked at negatively for it.
What would you have done in my shoes with a screaming tantruming child out in public?

Rana 4 years ago

You just do it! I find that life is the best when I slow down and appreciate the moments that we have together.

Arnebya 4 years ago

This is so helpful because I recall a time, pre-kids, where I did assume that every child having a meltdown simply needed discipline (not spanking) or a parent with a spine. Silly me. I encountered a young girl, perhaps 16, on the subway with a toddler and an infant. The toddler was screaming and kicking on the floor and she looked close to tears herself. I noticed everyone staring at her, judging her b/c of course at her age she couldn’t control her children, shouldn’t have had them that young, etc. (mind you there was no way to tell if one was hers and one was a neice/nephew or if neither was hers). I asked her if I could give him a coloring book and she looked baffled, surprised. She said yes, I gave him the book and a pack of crayons (I’d gotten them the day before at a fair at work). And he stopped crying and sat down and colored. And then she cried. Since then, I’ve tried my best not to judge another mother, SN child or not.

Shannon W 4 years ago

Then it sounds to me like you and I could whine to each other with no problems at all… Do you like wine with your whine?

Ellen @LoveThatMax 4 years ago

People say “I’m sorry” because they don’t know what else to say, and because they feel badly. I sometimes have a knee-jerk response because the pity gets to me—my child is not a child to be pitied. He is pretty awesome. But I’ve come to accept it’s just something people say, and sometimes I will say “Oh, please don’t be sorry—he is an amazing kid.”

Ellen @LoveThatMax 4 years ago

That button is an excellent idea.

Ellen @LoveThatMax 4 years ago

LOVE THIS!!! I need that t-shirt for CP!

Ellen @LoveThatMax 4 years ago

I worry about this too…within reason. One of the biggest lessons I’ve learned is not peer too far into the future. That doesn’t mean I have my head buried in the sand; we’re in the midst of making some financial plans for Max. And I hope that the resources for our kids will keep growing. Meanwhile, I try to stay focused on the present and helping Max as much as he can now. Otherwise, I’d be an anxiety-filled wreck.

Twylla 4 years ago

Well I suppose that is one nice thing we all have in common then, none of us knows how the others manage but we all seem to muddle through. Thanks for all of your wonderful answers!

Observation 4 years ago

I don’t know. I have to say if I saw a screaming kid dragged to a car, I might suspect a child abduction (even a non-custodial parent type one). I might think that the abductor was trying to act “cool” by sitting in the car for awhile in order not to arouse my suspicions, and not peeling out of the parking lot in a guilty manner. My first inclination would NOT be to ask the alleged abductor if everything was OK, or they needed help, either. If the situation looked sketchy I might call the police, too.

For a few seconds of “embarassment” you learned that you have a pretty good police department in your town, and you have a story to tell that could be ironically funny if you’d only look at it a different way. You also learned that you can’t dictate how people perceive things, sometimes they make mistakes (but in this case, they made a mistake in defense of a child). You shouldn’t let the mistaken impressions of others “humiliate” you, either. The lady who reported you to the police is the one who needs to be embarrassed for her error, not you.

A tough hide helps us get through the day. I think hypervigilant busy bodies can be annoying but I’d rather live near them than in a city where no one cares if a child get snatched from their front steps.

Rana 4 years ago

I completely agree. We have had more than one incident out where people say something nasty about my daughter not sitting still or running around. In fact the other day a lady actually told her father she needed a leash all because she was running around trying out all of the lawn chairs at Lowe’s. Mind you we were there when it’s not busy because she easily gets overstimulated. My older children are “typical” (dsylexic and an asthmatic) so when my youngest was placed on the autism spectrum I was really lost. Sometimes I wish I had a shirt that said something like i’m special what’s your problem??! Having help or not being glared at when my daughter is spiralling out would be really nice. There is nothing worse than feeling the glares when she melts down into a screaming, hitting, scratching fit and I have to carry her out in the only way I can without being bite or scratched but also without dropping her.
Acceptance and understanding would be so nice. Someone up above said something about ever outing being carefully planned….so true I always have my magic bag with me of tricks to calm, entertain or survive a unhappy 3.5 yr old!

Stacy 4 years ago

In regards to people saying ‘i’m sorry’ in response to finding out your child has a disability:
I am a special needs mom of a 3 yr old with autism and I have probably said that to others before myself, my intention and what is conveyed to me when I am told ‘i’m sorry’ is … I’m sorry you have this hardship, these struggles… At least, I hope that’s what people mean.

Kristy 4 years ago

I hate when people tell me they are sorry about my daughters disablity! That makes me so angry. I agree with your last sentence..I’m going to start using that..Don’t be sorry..she’s AWESOME! Love it!!

Kristy 4 years ago

I agree I like when people just ask why my 5 year old who has Spina Bifida wears braces on her legs or why she walks funny. But I absolutly hate when I tell them that she was born with Spina Bifida and they say, “Oh I’m sorry”. Why? She’s the most awesome kid you’ll ever meet! You show me someone else who’s had 20 surgeries so far and has gone through what’s she’s gone through and still keeps the positive attitude she has. I’m lucky to be her mom!

Kelley 4 years ago

Hi Tamika,
I love your last sentence. I feel the same way and reading that just made me beam with pride.

Kelley 4 years ago

Hi Amanda,
If the lady in the car would have come over and asked if she could help, it would have distracted my son and calmed him right down. I know it would have.
I know it better to be safe than sorry, but when you are on the receiving end of someone’s suspicions, it can really break your heart.
I know I have learned never to assume I know what someone’s story or situation is.
I completely agree with you, Empathy is key.

Kelley 4 years ago

Thank you Valerie…and everyone posting on this topic. It’s been very helpful and quite touching.
My son as made HUGE progress while my husband and I are constantly learning how to support him.
Thank you for your kind words. And the snowball story, love that!

Valerie 4 years ago

Thanks for the article. We will have to try this next time the opportunity arises.

Amanda 4 years ago

for me, even if you just walked up and said is there anything I can do to help you. of course the answer will probably be no. but at least you did the one thing, no one else is doing in that store. A lady once walked up to me, and started talking to my son. It calmed him right down. Do you know that lady was my lifesaver that day. She stood up and put her hand on my shoulder and said she doesn’t understand what I’m going through but that she’ll keep me in her thoughts. I know some may be offended by that, but to me that was a small step and she showed empathy. EMPATHY is what I needed, not sympathy.

Valerie 4 years ago

At least we know we are not alone. I am sure this has happened to others and I am also sure that it will happen again to us. We have also had a visit from child services for a bruise on my childs check that he said he got from being hit by a coffee pot. That would raise questions to me as well. Needless to say he was not hit with a coffee pot and the truth came out while talking with the social worker who showed up at my house. He was also not to keen on the visit from them. To show his irritation he began throwing snowballs at her. He has really good aim. It was kinda of funny. I understand they are just doing their job but it is still annoying.
Hang in there Kelley and I hope all is well now. We as parents grow everyday.

Amanda 4 years ago

I can so related to this, we take our son outside he becomes very quite. Calms down immediately. Go back inside, and melt-down. We go at times the store is not busy, but melt-downs still happen. We now are working with the tools they taught us but that requires going into these places and getting awful stares. There are times, I can wait for my husband to stay with him outside, but times I can’t and have to shop with him crying. Eventually he will have to learn to self-regulate and they experts tell us eventually he’ll figure out how to calm himself down. Until then :( I have to deal with stares, I guess.

Corrina 4 years ago

My son has ADHD and we tried the 123 Magic (it worked for the most part and I would highly recommend the book) However my Dr recommended The Explosive Child by Ross Greene ~ Parenting easily frustrated and chronically inflexible children. It was such a great book and I actually got more out of that book then the 123. Really helped me understand HOW my son’s brain worked. I strongly believe that if you understand the “how” then you will have a much easier time all around. I too get extremely frustrated with parents of “typical” children. My children are the world to me (as I’m sure everyone’s children are to them) and I am so blessed to have them. However it really iritates me that just because my son’s brain does not work the same as the majority of the class, then parents will make extremely rude comments instead of asking questions. He is doing amazing in school, at the top of his class, can pay attention during class, and his teacher even referred to him as a “model” student, however it’s his social skills that are behind his peers. Its funny though, when I go to school I see him with a ton of students flocking around him and everyone is playing and he seems to be quite popular. Everyone is laughing and having a great time. Then the parents show up and its a different story. Sad that our children can be so accepting of others ~ parents could learn a lot from children sometimes.

Kelley 4 years ago

Valerie,
No doubt the situation you shared above was terrible for you, but thank you for sharing it, it has helped me. I had a similar situation at a grocery store.
My son, 4 at the time and recently diagnosed with Asperger’s, was having a bad tantrum. So instead of taking him into the store to disturb others, I took him to the car to cool down while my husband and daughter, 2, went in the store.
I put him in the passenger seat and got in the drivers seat and just waited with him.
I looked around at one point and saw a lady staring at my car and writing something down. It infuriated me. It got out of my car and asked her to drive over to me. She just drove away.
My son calmed down, we went inside the store to find my husband. Not 5 minutes after finding him (and while I was telling him what happened) I see the manager of the store and a police officer coming towards us. The lady had called the police on me saying something about a child abduction. Mind you, when we were in the car, it wasn’t running, nor was I trying to hide my son.
I melted in embarrassment (we live in a very small town and were in the only grocery store) and anger. The cop spoke to us for a short time and I, through tears, explained what the REAL situation was.
I had to excuse myself back to the car to cool off and found my car surrounded my local police and sheriffs. I was so humiliated!
My reply has turned out much longer than intended, but it felt good to share this with someone that has been there.
If this lady had asked if I needed help rather than assuming whatever she did, I could have respect for her, instead I hope to run into her one day and explain to her what she did to me that day.

Amanda 4 years ago

I would love someone to not assume, I don’t have control of my kid because he’s having a melt-down in the store. I want them to realize it’s because he has a sensory disorder, possible autism. I do have control over my kid to the extent, I can. He’s not a bratty kid who is acting up, he is a kid who is overwhelmed and learning how to deal with his sensory needs.

Valerie 4 years ago

Wow – had the same situation in an airport but instead of someone asking me if there was something they could do for me they got security involved saying I was mistreating my screaming kicking hitting son. Airport security in Philly were not very nice and made the situation worse. Now that he is older we do not seem to have these big meltdowns.

Valerie 4 years ago

Just be there for your friend. Be understanding of the hard times and supportive. That is what I need to help get through the tough times with my Aspie. He is a handful but wonderful at the same time.

Natalie 4 years ago

There is a growing network of resources for parents whose children have special needs and are older. I believe the best we can do is teach society that tolerance and acceptance are required.

Evin Cooper 4 years ago

Shannon – that kinda crap annoys me too, I can’t even imagine how it makes you roll your eyes LOL

Tamika 4 years ago

Trust me that this question keeps many of us up at night. What happens if I die tomorrow? Who will take care of my boys? It’s asking a lot to ask someone to take responsibility for a child with special needs.

I do everything in my power to maintain a healthy lifestyle to enable (hopefully) a long life. This is a touchy topic for many of us.

I just hope and pray they find a way to extend life because I cannot leave my boys behind.

Sunday 4 years ago

I often tell people that I’m not allowed to die because the thought of someone else taking on caring for my two boys scares the crap out of me.

I have heard horror stories of parents who exhausted their financial resources caring for their disabled children to the point of having to give up their parental rights so the child could be placed in a residential home. Then we hear about the repeated sexual and physical abuse that happens in these homes and is then covered up by staff. Our children may not be able to tell us or someone else if they are abused. Its terrifying to even imagine.

Shannon W 4 years ago

I dont expect other parents to be perfect any more than I would want expectations put on me. However, I have a friend who has children older than mine and she tends to dramatize things by saying “You have NO idea how hard this is…” or “I dont know how I’ll get through this. Its just so hard” and she’ll be talking abt paperwork for college, or picking our prom dresses, or something similar. I love hearing abt day to day things. I love hearing abt the challenges other parents have or the funny things their kids do. But dramatizing trivial things makes me stop listening.

Tamika 4 years ago

I have two of those little boys but only 1 has the excuse of being autistic. My 12 year old is just beginning to “try” to talk back. What worked for me with my autistic son (who is also highly functioning but a stubbon gemini) is to ignore the behavior.

Actually it worked with both kids. When he’s not behaving, I tune him out. I talk to him just as I would talk to another person that was rude or disrespectful to me.

(Go/stay) in your room. I do not want to (talk/play/see) you when you behave like this. What you (said/did) was not nice. When you want to (behave/speak nicely/apologize) you can come talk to me then.

Anonymous 4 years ago

I hope anonymous is okay… the follow question keeps me up somewhat at night and i obviously, feel some shame about putting my name on it…

it is… what is going to happen to all of these special needs kids when they age… there seems to be so many issues, and for now, it’s exhausting but kids with needs have wonderful “staffs” in their moms, dads, grandfolks, and even strangers and teachers who like cute kids.

I wonder, a lot, about what our society will be when we parents all pass on – and what the world will look like and how we train, our children, able bodied and not, to prepare for this new world.

it seems as though our able bodied kids are going to need more patience and skills then even we have… not only for more kids with challenges that may follow – but for their adult friends.

i worry about this all the time because we, as parents, are not going to be there to see it.

Natalie 4 years ago

Yes, please! I need to have real friends who share their whole lives with me, not just what they think I want to hear! :)

Tamika 4 years ago

Oh there is nothing like you and your partner clapping in glee at the playground because your autistic child with sensory issues just dumped dirt in his hair!

Or the time we caught him eating his own buggers! (I know gross but typical for the age at the time)

Or the first time he learned to jump at almost 4.

We look at life differently. They force us to slow down and enjoy each moment.

Sunday 4 years ago

I love Ellen and her blog. There are so many amazing special needs bloggers out there who balance their frustrations and challenges with grace and humor….Some days its the only thing that gets you through!

As a mom of 2 boys with severe autism I get a lot of stares, eye rolls, and unwelcome advice from parents. This is all too often the case when you have a child with an “invisible” disability. To look at their picture you would not be able to tell they are different from any other child but when we are in public and something sets them off their meltdowns can become quite violent and unfortunately many assume they are throwing a fit or having a tantrum because they are spoiled. They aren’t.
I want to get a shirt made that says, “My kids are autistic, what’s your excuse?” because people can really be quite rude.

Natalie 4 years ago

In a situation like that, I always try to let the mom know I’m on “her side”. I say to the child, “You’re just so curious! That’s great!” or something like that. Something to diffuse the situation a bit. Then ask the mother, “Do you need a hand? She seems really interested in that bag!”
Smile, be friendly, and ask yourself what you would want someone to do if you were the mom.

Tamika 4 years ago

I love her blog!

Tamika 4 years ago

Our caregiver was hired understanding that he has autism. If your caregiver can’t deal with her “out of sync” days then they need to go.

Adults need to build a bridge and get over it. When my son was diagnosed, my friends changed and in my opinion all for the better. Even certain family members stopped coming around. I didn’t care as long as my household was happy.

Children respond to the “vibes” they get off of certain people. If you aren’t on our team or aren’t able to deal with him bouncing off of the walls at any given moment then don’t stop by.

I have a swing hanging from my living room ceiling for days he needs that particular input. There is a sandbox on my terrace (we live in NYC in a two bedroom co-op). I allow him to play in water in the sink both in the house and laundry room if I’m washing clothes.

We’ve built up a tolerance for sensory input. He covers his ears still but I ask him about it and he’ll uncover. When people ask what’s wrong, I just tell them that his autism is showing, laugh and walk away.

Natalie 4 years ago

One of my best friends has a little girl with a myriad of problems that aren’t “visible”. She looks people in the eye when her daughter gets dirty looks for doing thing a child her age “shouldn’t” be doing and says, “She has autism, ADD, etc.” She says it calmly and very factually. Most people are sympathetic, but the few that aren’t she just shrugs off. I wish I could be more like her!
Hang in there!

Julie T. 4 years ago

We adopted a child with special needs almost four years ago and we have two older children who are 9 and 12. When we adopted and began special needs parenting, I noticed a shift in some conversations with friends and family members who began to feel like they couldn’t share their struggles with me or were hesitant to share their children’s successes. I try to nip that in the bud by asking questions about what is going on in their lives and trying to relate. I for one just want to have worthwhile conversations about whatever is bringing joy or struggle to my life and my friends’ lives.

Stace 4 years ago

Once, when my Autistic daughter has just been diagnosed at 3 yrs old, we were in the mall together. Back then it was hard to take her to places like that because it was pure sensory overload. She had a nuclear meltdown and I was doing my best to calm her down. I had staff members that worked at the mall “kindly” ask me if “there was a problem”. I simply told them, “No, my daughter is autistic.” Of course, they had no clue what I was talking about, because back then awareness was nothing like it is now. I would have rather someone ask me if I needed help, rather than to insinuate that I was, in their mind “neglecting” my child or allowing her to act up, when I was doing my best to help her. So if you see something along those lines, think before you speak. It can really drag a special needs parent down a LOT when people automatically assume you aren’t doing the best you can for your child.

Tamika 4 years ago

Prayer always worked for me. I also allow myself to have a “breakdown” and “pity party” once a year to maintain my sanity. It happens between Mother’s Day and my birthday (which is tomorrow) and lasts for 3 days.

Having a child with Autism forces you to view milestones in different ways. I remember 3 years ago when he was turning 5, I completely freaked because he would begin to lose his teeth. I was absolutely nuts for 3 days. He was just beginning to speak. How would losing his teeth affect his language developement? I mean, my poor husband. Just as fast as it began, it was over.

His first tooth fell out, no blood, no fuss, and he just gave it to me. My husband and family are all on alert for the breakdown anytime between the dates mentioned earlier. They give me my space when I reach that point and support me when I bounce back to my normal (Kick butt advocate mom) self.

Scary Mommy 4 years ago

What an awesome button. I love that.

Natalie 4 years ago

Lots of support, lots of tears, lots of love, finding joy in the small things, finding joy in the BIG things…mostly not thinking about it, just plowing in there and doing it!

Julie T. 4 years ago

Love the button! I’ve heard the suggestion of carrying around business cards with something similar to that, along with a short explanation.

Natalie 4 years ago

Find a good community on or off line. Google for online ones and ask your local head start or help me grow agencies for resources. Most communities (and many insurance companies) have a phone number you can call for help.

Tamika 4 years ago

Jennifer- How old is your child? My son was like that around 2-3 years of age to the point where I was afraid to take him out of the house. He was non-verbal and couldn’t communicate his wants or needs. We quickly taught him ASL (sign language) and implemented PECS as a backup. Side Note: *There is no sign for cheese doodles*

Good luck and if you need more information about signing please let me know. Happy to share!

Tamika 4 years ago

Don’t apologize! We are not having a pity party but doing everything we can to enable our children to live to the best of THEIR abilities. We love our children the same way you love yours. There is no need for an apology.

When I tell people my son is Autistic, they immediately say, “I’m sorry”. My response is, “Please don’t be sorry for me because he’s AWESOME”.

Natalie 4 years ago

Thank you so much for this post. My daughter has CP and I have had to grow from a timid mom to an advocate for her. I never thought I could do this, but I guess if they only handed out kids with special needs to people who thought they could do it, very few people would have SN kids! 😉

Tamika 4 years ago

Well this is interesting! I’m the proud mom of a “typically developing” child and one with special needs (autism) and have just started following your blog. I also follow a special needs blog that deals with sensory issues. Bridging the two separate groups is really thoughtful of you.

Disabilities are unique since some are physical and some are not. You wouldn’t know that my son had autism if I didn’t tell you. You would think he was just shy, that is until you see me changing his diaper at 8 years old.

I love him just the way he is, so much to the point if they offered me a pill to make him “normal” I would decline.

I wear a button when we’re out on family excursions and it pretty much sums up my attitude:

Questions cheerfully answered…..Stares cheerfully returned!

Keep up the AWESOME work!

Natalie 4 years ago

I agree! I don’t mind a four or five year old asking “What’s wrong with her?” but anyone over the age of six or so should know not to use that terminology. I can not stand adults who ask, “What’s WRONG with your child?” I usually answer, “There is nothing WRONG with her. If you would like to know her diagnosis, it’s CP.”

Amber 4 years ago

I’m the proud mother of a child with Autism and CP. I just wanted to say that this was a good post and that these questions are good ones. I have found with my own experiences it’s been the Mom’s I’ve had the most issues with. Not the children. On the most part all the children have been understanding and they don’t see my child’s disability. They just see her. It’s the parents that I have had a hard time with. So many have been ignorant. Thank you for posting this….Thank you….

SammiSue 4 years ago

That is really helpful thank you

Evin Cooper 4 years ago

Do you want to hear about MY day? I always feel like a jerk if I’m chatting w/ a special needs mom and complain about my day or my kids. Should I just zip it and keep it positive or can I whine to you like I would any other mom? :)

Ellen @LoveThatMax 4 years ago

Agreed!!! Being straightforward is best.

JourneyBeyondSurvival 4 years ago

I second Andi. “I’m an educator…etc.” is perfect.

JourneyBeyondSurvival 4 years ago

It’s been very difficult, but I’ve had to learn not to care. It’s been a few tears in my car, and some venting phone calls. To tell you the truth, the wheelchair was actually a welcome relief so that people would stop judging her according to impossible standards.

People are always going to have an opinion. It seems that unidentifiable disorders are targets. I do make it clear to anyone watching here that behaviors-of the adult-will not be acceptable, and my child will be removed from their care if they can’t follow my directions.

JourneyBeyondSurvival 4 years ago

I often swing either way. But, the key indicators for me are if my head is up and looking around, or if I’m introspective with my gaze away from people. I usually do want to chat. I love to meet new friends, and even if I’m introspective and ‘interrupted’ I’ve never regretted someone chatting with me.

So please, chat it up. Take your cues from the length of their reply and if they engage. :)

Julie 4 years ago

Honestly Andi, I would stand there in the same dilemma likely. I have social anxiety and trying to figure out how to respond is hard for me. I would want to help and not offer because of uncertainty in how it would be received. So, the real issue is mine I guess. I didn’t think of it that way until you turned the question around. Thanks.

Peggy 4 years ago

My son’s teachers have always complimented us on our perspective: that we see not how far from the top of the mountain he is, but how far UP the mountain he has come. “Count your blessings” helps keep everyone sane :-)

Finding Normal 4 years ago

I agree…just ask. But please don’t ask me what’s WRONG with my child. That just sets off different buttons. You can ask what her diagnosis is, or even what the nature of her disability is. But when you ask me what’s WRONG with my child, I will probably tell you nothing. And get defensive and sad because while she has special needs, there is nothing wrong with her.
I talk with my typical 6 year old that everyone is different. Everyone is made the way they are supposed to be. Everybody is good at stuff and needs extra help with stuff. Maybe it’s because he’s been in hospitals with us since he was 21 months old, or maybe it’s our conversations about this (waiting for someone to make fun of him for his sister), but his big phrase is “Well, everybody’s different!” :)

Peggy 4 years ago

When people have commented over the years that “I could never do what you do” (parenting a special needs child), I say “You’re right, because God didn’t call you to do it. If He had, He would have given you the grace to do it.”

JourneyBeyondSurvival 4 years ago

Yes. I agree with the other special needs mothers. I like when people ask, because everyone else is wondering, and I always speak up clearly so everyone can hear.

I don’t mind answering direct questions at all. I do mind, “EW.” or “That’s yucky” when my daughter is drooling/spitting up due to reflux or accidently fills her diaper. It’s not really rational, but it offends her and hurts her feelings. She can’t help it.

If a parent doesn’t say anything to a child saying such things over and over I say just that. “She doesn’t want to do that, but she has to sometimes.”

I would 100% prefer a dialogue than the isolating bubble “Don’t stare!!” creates.

Peggy 4 years ago

I just wrote a blogpost on a tantrumming technique that has worked wonders for us over the years. It’s a little long to reproduce here, so if you want to check it out, go to:
http://chosenfamilies.org/author/Peggy/

JourneyBeyondSurvival 4 years ago

I love this! Yes. Please just ask. What you think is the perfect thing to do might not be. It’s just like a husband preferring a cuddle to dinner as an expression of affection. Each situation is unique. If you do not want to ask, then you could leave a note of admiration in their mailbox.

Peggy 4 years ago

I remember one airport scene when my autistic son was younger (he’s now 16) and we were traveling somewhere without Dad for some reason, where we had a long layover or delayed flight (or maybe it just seemed interminable), and I couldn’t let him roam because he would run, and I couldn’t trust him to reference me and stay within eyesight of me. So he had a screaming/crying/ flailing fit that I could only manage by sitting on the floor cross-legged, with him in my lap and both arms wrapped tightly around him in physical restraint. I was shedding buckets of my own tears openly, and not a single person offered any attention, much less compassion or a kind word. “Is there anything I can do for you?” would have meant the world to me. Even if there was nothing you could do.

Gina 4 years ago

OMG I have no idea how parents of walkers and talkers do it. My child is generally where I left him (brakes permitting), he eats the best diet, is great to have around because he is who he is, delightful, immobile, non-verbal, joyful, funny and has the best giggle EVER. I do sometimes wish he was a little less nocturnal but the reality of my kid is the most difficult thing about him is the bureaucratic bullshit that rules his life, the red tape and the cost, cost, cost of everything disability. If it wasn’t for the red-tape I would be probably be tilting my head on the side, looking at you with pity in my eyes and, if I was that way inclined… probably offering to pray for you and your three typical kids LOL. Truly I have no idea how you do it.

Andi 4 years ago

Just say what you just said!

Andi 4 years ago

Definitely appropriate! When my daughter used a walker all of the kids LOVED it!

Andi 4 years ago

Thank you!

Andi 4 years ago

I get the feeling that support groups bring you down – when Sarah Kate was younger, she went to PT in two different settings: one was a local private PT office, and the other was a large PT group affiliated with a big children’s hospital where she went for intensive PT sessions. The gym at the big PT office always had multiple kids and therapists working in there, most with various forms of CP. I felt at times that I might go mad sitting there. I also didn’t frequent parent forums any more than necessary – it was just too overwhelming.

Andi 4 years ago

I agree with Michele C – while I appreciate having friends with this in common, I’ve found that casual contact is best. I want my children to be as fully integrated in the world as possible, and the world isn’t made up only of people with CP or Down syndrome, so I model the relationships I want my children to have. My closest friends are “regular” folks who’ve embraced my children without hesitation and people whose children have autism or other conditions unrelated to what my children have, which I think is a natural occurrence based on the common thread of being different. It’s like a secret society you become a part of one day without knowing it was going to happen.

Rebecca @ Unexplained X2 4 years ago

I always want to ask…as an educator, I’m naturally curious and could always learn more about different disabilities. The problem I have though is HOW to ask without seeming nosy or rude. Ideas?

Dave 4 years ago

completely appropriate :)

Amy 4 years ago

What Andi said. And, for me at least (my girls are surviving triplets, and my only children), I don’t know any different – I’ve always had two at the same time, always had one who needed a bit more. And honestly, most of the times it is the throwing food at meals, temper tantrums and waking me up in the middle of the night that is the most tiresome!

Amy 4 years ago

Maybe instead of “what’s wrong with her?” redirect the question – is your child wondering why my daughter can’t sit? Why is she wearing leg braces? What that splint is on her arm for? That’s a specific question that you’d ask of anybody – “You have a cast, what happened to your leg!” I don’t want people pretending that she isn’t wearing braces – if you ask, I answer, and then everybody moves on. A four year old once asked me about my daughter’s arm splint, I explained to him what it was for, he used his arm to demonstrate what her arm did in comparison to what we wanted it to do – and that was it. Now it’s normal.

Amy 4 years ago

I agree with Andi. It is obvious my daughter (who has cerebral palsy) has something wrong; she’s 2 and can’t sit unassisted, so clearly she can’t walk, and her movements are not “normal”. I’d rather somebody ask me what is wrong, then sit there and pretend that it is perfectly normal for a 2 year old to not be sitting. And then she will say hi or show you her doll or whatever she’s playing with and you’ll see she’s just the same, even if she doesn’t move the same.

Alicecrumbs 4 years ago

Company is lovely! Thanks for being interested in how to help! X

Scary Mommy 4 years ago

I loved that post– thanks so much for linking to it! (P.S. Your kids are ADORABLE!)

Scary Mommy 4 years ago

Nella Hampton’s birth story is the most amazing I have ever read. So beautiful.

Julia Roberts 4 years ago

Thanks for the link for @supportSN

MarfMom 4 years ago

I’d seek behavioral therapy for him. If the school isn’t providing it, call an IEP meeting and request it. ABA is a research-proven method, but there are others. We’re struggling with our 28 month old’s behavior right now and should be starting ABA soon.

Here’s the thing though: most of our kids aren’t TRYING to be difficult. They may look sassy/contrary/bratty, but I think a large part of it is that they just have so much trouble understanding the world around them (not to mention their sensory issues) that they seize control wherever they can find it.

Have you tried a picture schedule? That has been helpful for us, because it shows my son exactly what is going to happen and in what order. We also set timers and use verbal countdowns to help with transitions. If I surprise a transition on my son, he’ll dig in and refuse or have a meltdown. So, if he’s playing with blocks I’ll say, “M, you have one minute left. When the timer goes off it will be time to brush our teeth.” At first he might still complain/fight me, but over time as he’s seen we’re consistent with the policy he goes along more times than not. If he’s having a particularly rough time, I might let him bring his toy with him to the next activity.

Personally, I’ve stayed away from spanking. All kids on the spectrum are different, but mine has some real issues with agression. I think it will be too confusing to explain that he can’t hit while spanking him.

Julia Roberts 4 years ago

There’s a great behaviors group on http://www.supportforspecialneeds.com but for my son (behaviorally challenged for many years) we used a behaviorist for ideas as well as a premise of ignoring bad behavior (not dangerous) and over praising good behavior…worked for us.

Ellen @LoveThatMax 4 years ago

YES! What Andi said.

Julia Roberts 4 years ago

Yes, appropriate. When my daughter used a walker she realized pretty quickly kids were drawn to it and used it to her advantage! So, for me, yes. But don’t be offended if all parents don’t feel the same way – but try, always try a friend approach! (kids approaching always get extra wide understanding from me for any question they ask in my book)

Julia Roberts 4 years ago

Without pity…I love it when someone asks, “Is there anything I can do to help?” when I’m overwhelmed. In the years prior when our son was most challenging, sometimes I’d just need a quick distraction for him for me to get through the checkout line, just someone to talk to him? Show him something? Loved that…and always looked at the people with deep appreciation.

Julia Roberts 4 years ago

I can make personal connections through members of http://www.supportforspecialneeds.com who have children with down syndrome…she/you can contact me through the site.

MarfMom 4 years ago

I personally don’t have a problem with labels. My son has autism. That’s a fact. And people have at least a little idea of what autism means, which can make it a useful label. From there I’d elaborate a bit more on the differences though. For example, if someone were going to talk about my son, I’d like them to say something like:
“He has autism. That means he thinks/processes information a little differently from you. I wonder if he likes to swing like you do. Why don’t you invite him to play with you and find out?”

Debbi Henry 4 years ago

I agree with not asking what is “wrong” with him/her. Then I would give your child something familiar to do, such as say hello, wave hello, or ask what my child’s name is. You could have your child tell my child his/her name and how old they are. That way, your child is comfortable doing something they have done before and they are learning that children with special needs should be treated like everyone else.

Julia Roberts 4 years ago

I love it when people I know help me…it took some time to get used to accepting their help, but they softened me up by just showing up. A basket of muffins left on the door, calling or emailing to see how an appt went/being interested in what is going on, tangible things, like dropping off simple duplicate entree you’ve prepared for your family/picking up milk, coming over and keeping us company if things are stressful…non stressful playdates if we parents get along well…

S Club Mama 4 years ago

Alright, I have a high functioning autistic son who is 3yo. What’s the best way to discipline? He’s got a sassy little mouth who always sasses back with the opposite of what I tell him to do “bed time; time to play with cars” “sit, stand” “do you need to pee? poop” and on and on. Time outs don’t work well because he kind of forgets why he’s there (or would shorter time outs work?); spanking does well sometimes (but I don’t want to spank all the time); social stories help but I can’t write one for every single thing!

Debbi Henry 4 years ago

I think that using a label is fine, as long as you follow it up with explanations. You could always encourage your children to ask what their name is, or just to say hello to them. I love when kids ask my daughter that, of if they just wave at her. She loves it too!

I would also encourage your children not to ask what is “wrong” with him/her. There isn’t anything wrong with our kids, and we love them just like you love your kids.

I would love for you to explain that our kids are kids, just like them. They have feelings that get hurt just like your kids do. If they have the time to get to know a child with disabilities, they may discover that they have lots in common, such as favorite tv shows, toys, or favorite famous people.

Michele C 4 years ago

Just ask! :)

MarfMom 4 years ago

Yes please just ask how you can best help! Many times I could use a hand when I’m out with my toddler with autism and my infant, but if my son is having a meltdown I’d really rather you not touch or talk to him.

Michele C 4 years ago

I constantly wonder that about people with more than one kid. It’s not the special needs stuff that tries my patience, it’s the regular kid stuff… dragging his feet at bedtime, yelling, hitting.

Emily 4 years ago

Last summer we were at the beach and my son (then 2) was eyeing up a sand-adapted wheel chair. The boy who’s chair it was was playing in the sand with his parents. They were too far away to hear me but I turned to my son and asked him “do you think his chair is cool?” “yeah.” “would you like to go and tell the boy you think his chair is cool, we can make a new friend.” …so my question is, appropriate? Inappropriate? Or is there a better way to approach curiosity.

Michele C 4 years ago

I have been in a couple of support groups, but found that there were always other issues going on. The best support system I’ve found is through casual contact (and thus friend-making) at The Miracle League, the special needs baseball league our son plays in.

Ceci 4 years ago

I found it great and not great. I joined an online suport group for parents of stroke survivors and that has been extremely helpful. My daughter has mild Cerebral Palsy and I went to get information about joining the CP group in our community and another mom was there and saw me pick up the flyer. She said “Your daughter has CP, she looks fine to me”. I decided that although I knew a lot of families would be welcoming that at that time I didn’t want to join. We recently joined an early intervention class and the parents break out for the last 45 minutes and that’s extremely helpful and all the kids have different degrees of needs. I have found though that finding other mom’s to talk to has really helped me especially when she was first diagnosed.

Craftwhack 4 years ago

Aw hells. What it comes down to is that we are all socially awkward in situations that aren’t unfamiliar to us. I have two kids who aren’t special needs, but I consider myself a sensitive person and I want to act the correct way when my kids want to ask a blunt and innocent question, so this is pretty wonderful. And there’s all that curiosity. From all of us. So thank you again for this dialogue. I’m going to explore the other comments now.

Andi 4 years ago

If she looked overwhelmed and her child/children appeared to be typical, what would you do? It should be the same response. We really are more like typical moms than we are different, I promise!

Andi 4 years ago

Exactly the opposite – I feel like I can’t ever get enough interaction because people assume I’m too busy or that they don’t have anything in common with me. We are often left feeling isolated – less so now with social media and blogging, but it’s still there.

MarfMom 4 years ago

I still haven’t figured this out. Sometimes I just explain “my son has autism” and then deal with the ensuing “he doesn’t LOOK like he has autism” comments. Other times I ignore it, or sometimes I am less than polite. I don’t think I’ll ever convince some people, so I’m just trying to learn to not let it bother me, but I’m not there yet.

Also, have you seen http://www.spdbloggernetwork.com/? I’ve found it a useful place to connect with other SENSEational parents. :)

deb 4 years ago

Hi Nikki,

Our oldest, Meg, also has SPD, and it’s been an uphill battle. She’s 11 now and also appears typical to others right before her meltdown. Actually, after years of work, she is typical most days and because she has had to learn more about who she is and how she responds to people and situations, she tends to be a bit more mature than others.

At first, it was really hard to deal with the insinuations and comments about her behavior. It can still be hard now, but we’ve also insulated ourselves from people who are more prone to judge. Our gameplan is basically that we tell people in authority (teachers, coaches, troop leaders) that we can trust about Meg, we ask them to aware and look for triggers, we tell them the triggers that we know of (low protein, tired, too much attention when she is learning something new, yelling at her, etc.), and then we watch closely. We give her feedback. We stand up for her but emphasize that she needs to listen to her leaders, coaches, teachers.

I don’t know if any of that helps. Being her mom has been a work in progress, but I’m getting better at it. :) Above all else, I guard her heart and pray protection for her.

deb

Andi 4 years ago

Ask us if we would like help, and if so, what kind. Sometimes when people try to help it’s actually a hindrance (case in point: if my daughter falls and someone immediately grabs her to help her up, I wish they hadn’t, because that’s a skill she needs to work on). We don’t resent the intrusion – it’s just that we just don’t want to seem ungrateful. Sometimes help is like a Christmas fruitcake…a nice gesture, but something we could have done without!

Stacy 4 years ago

I, personally, never see an offer of help as an intrusion. Some people are rather private and don’t like to share or educate. It is my experience that these people are still in denial about their own situation and therefore unable to discuss it.

I love to tell people about Autism (my son is 3.5yrs old, diagnosed at age 26 mos). I want to share our story and our struggles and our joys because I want people to know how hard it is but that we aren’t contagious or social pariahs and that when I/we retreat or turn down an offer/invitation, it isn’t about you, it’s because my child cannot manage the situation.

Sometimes it’s the small things that help, prepare a meal on occasion. Do something seemingly small like bring in your neighbor’s trash cans for them so they don’t have to worry about it, walk their dog once a week, shovel their sidewalk in the snow, share your housekeeper, etc … It saves them, what? three minutes? But really, it would tell me that someone recognizes that my life is complex and exhausting in physical and emotional ways most people cannot ever imagine. Doing something small such as this would give ME an extra three minutes to do something enjoyable with my children and not focus on our problems, do a household chore, do something therapeautic for my child, or just take a much needed deep breath so that I can be a more present mother.

Craftwhack 4 years ago

That’s pretty wonderful. I’ve thought this way, too, when I feel overwhelmed with my kids, and then wonder how other moms do it. Thank you.

Andi 4 years ago

Personally, I like it when people just ask. Everyone wins because parents and kids no longer feel awkward when they realize that we’re all more alike than different. It also gives us a chance to be an advocate, and maybe you guys will learn something new.

MarfMom 4 years ago

Is your child seeing a behavioral therapist? My son has a lot of behavior issues…we’re applying to start ABA with him. My email is marfmom at gmail dot com if you want to chat about it.

Mama to Baby J and Bean 4 years ago

Thank you for doing this! I have two little boys – one typical and one with Williams syndrome and I appreciate having the opportunity to reach out and share my take on the SN world!

Andi 4 years ago

I have a young son with Down syndrome. A good source is the National Down Syndrome Society website, as well as the books “Road Map to Holland” and “Gifts”. There are a number of mom bloggers with young children who have Down syndrome, as well. My blog is one, of course, but there are others. In my opinion, blogs are the most comforting because they aren’t so clinical.

Mama to Baby J and Bean 4 years ago

Andi hit the nail on the head. Annoying gnat, indeed!

Andi 4 years ago

When it comes to your babies, you just do it. I find myself asking the same question about moms of multiples, moms of more than three kids, single moms, etc. :)

Mama to Baby J and Bean 4 years ago

Absolutely! I seek support from my husband and mother. I also interact with other families – online and in person – of kids with the same condition as my son. I have found talking with parents in the same circumstances to be incredibly helpful!

Andi 4 years ago

You hit on the key point: we take pride in their accomplishments – a LOT of pride! I do hate the Pity Stare, but once I’m away from the person doing it, I don’t think about them again. People who pity me aren’t in my circle of friends, so other than in the moment, they don’t bother me. In the moment, they are like an annoying gnat or fly. :)

Mama to Baby J and Bean 4 years ago

I DO want to interact – unless I’m in the middle of dealing with a meltdown or other catastrophe. In that case, an understanding smile is certainly welcome! Otherwise, I love to chat!

Andi 4 years ago

I’m the mom of two children with special needs. My daughter has cerebral palsy; my son has Down syndrome. I was asked to speak at a metro-Atlanta area MOPS group a few months back and a portion of my talk covered this very topic. It was well received, so I adapted it for my blog. It’s titled “Set Apart: A Primer for the Typical Folks” and it deals with some of the questions I’ve already seen asked above, as well as a few others.

If anyone is interested in reading it, the link can be found here: http://wp.me/p1yHoW-dJ

I am an open book, as well – so feel free to ask me questions and I’ll tell you what I think (with both honesty and love!)

Mama to Baby J and Bean 4 years ago

Hi! I’m a special needs mom. In this situation, you can explain that nothing is wrong with the SN child. S/he just learns differently and that’s ok.

Julie 4 years ago

My question is similar to okso. I was in the grocery store one day and there was a woman ahead of me in line with a little girl with some severe disabilities. Unfortunately, the cashier and bagger were the type to stare and openly look disgusted. She was trying to unload her groceries, use her coupons, pay, etc.. and the little girl kept grabbing one of the plastic grocery bags (that the bagger put in her reach btw) and put it in her mouth. The cashier in the lane next to use pointed it out to the mom the first time and the mom moved the bag but not far enough. The second time she got the bag they told her much more rudely. My heart was breaking for her and I wanted to help, but the little girl seemed to be partially blind and I would guess had sensory issues and so I didn’t know if I would be a help or make things worse. (I mention sensory issues as my son has Asperger’s and she had some of the same stemming type behavior he does). The mother just looked completely overwhelmed and like she wanted nothing more to be out of there and I didn’t want to make an uncomfortable situation worse for her. How do you know when to approach someone without being offensive?

keri 4 years ago

My nephew is autistic, before this I always felt pity for parents of special children. I now feel the pride and joy in all of his achievements. How do you overcome and handle the fact that people feel sorry for you for having a special child? Does the sheer joy of being a part of their life overshadow others’ thoughts?

deb 4 years ago

Hi, Twylla!

Just as background, I have two children with special needs, and my brother-in-law also has special needs. My mother-in-law (the best support that I ever had) always hated it when people would put her on a pedestal because of what she “suffered” while raising Jesse who has pretty extreme CP. Her response was always that she does exactly what every other mother does or should do, and that’s love her children. You do what you have to do.

Yes, raising kids with special needs can be exhausting and push your patience to the end, and as you wrote raising typical kids can be exhausting as well. But, in both cases you do what you have to do. And, sometimes what you have to do is leave the house (of course, your children are taken care of) and take care of yourself. Sometimes, repeating, “this too will change” can get you through a rough patch. Having a friend or relative who will just listen while you cry or rage can be what you need. Clinging to the wonderful things about your child helps. And, I don’t know what I would do without my supportive and loving spouse who knows how to keep me centered.

Hi, T!

I’ve been fortunate that I have my mother-in-law, husband, and another good friend who also has a child with special needs. Support groups didn’t work for me. They bring me down. When I get out of the house without my children, it’s often because I need a break or an escape. The support groups that I’ve been to haven’t offered me that.

deb

nikki 4 years ago

I have an eccentric child. She has spd (sensory processing disorder) On the outside she is perfectly typical looking, a beautiful, fun loving little girl. But she has overcome many obstacles regarding oral sensitivity, audible issues, senses all around. It is a struggle everyday. My question to those of you who have children with disabilities that are not plain to the eye, ones that are underlying, how do you get people to understand that your child is not able to do the things some others do? How do you get adults and caregivers to understand that you cannot force them to behave a certain way, or do certain things due to their disability? How do you get people to stop judging you and saying that the child is “that way” because you made them that way, and they don’t really have a disability, that’s an excuse.

twylla 4 years ago

How do you find the patience and energy to deal with all the extra needs your children have? I often find myself at the end of my rope with three typical kids.

T 4 years ago

Was there any point where in time where you felt you needed support too? Where did you turn? Have you joined a support group, was it helpful? If not, why not?

Pam 4 years ago

I think this is awesome! I have 3 “typical kids”, but I am in grad school to be a special education teacher.
My kids can sometimes stump me, when it comes to questions about special needs kids. In a world that is so focused on the political correctness of every term under the sun, I would just love to know exactly what the parents of special needs kids want when we tell our kids about their kids.
My kids are not typical in that they have been exposed to children with varing differing disabilities for years, but I still hear the questions : What’s wrong with that kid? And why do they look different than we do?
Some disabilities are more visual, while others can be more internal. I have never been one to label, but would you rather us use the labels or just explain the differences? BTW I hate the labels and in some ways rather explain the differences rather than giving a kid a label and just breezing by never to encourage my children to get to know the person no matter what.

Life with Kaishon 4 years ago

I want to know if you want to interact and talk, or if sometimes you just want to do your thing : ) I remember when Kaishon was little sometimes I liked meeting new mommys and being a part of the clique, but sometimes I just wanted to push my baby on the swing and not talk to anyone. Do you feel like too many people want to interact and you can never relax?

Jennifer 4 years ago

I have a special needs child, autism and sever adhd. How do do handle out of control behavior. At times I’m at my wits end.

Samantha 4 years ago

Love this.

My question: Do you have any resources for special needs parents? My best friend is expecting a baby with downs and will need all the help she can get.

Many thanks.

nikki 4 years ago

I know it’s normal at this age but my 4 year old stares and asks audibly what’s wrong with her? I don’t always know what to say and even when I do I know it hurts the child and the parents feelings. What are your thoughts?

Ellen @LoveThatMax 4 years ago

Hi, all! Thanks for a great post, Jill. These are two great questions, I get them a lot. I can’t speak for all parents of kids with special needs, but here goes:

• If your child is staring, feel free to pull them aside and ask them not to. There’s a longer conversation to be had about how even if kids sometimes like or act differently than other kids, they are still kids who enjoy the same things that they do… But meanwhile, in the moment, maybe ask your child if he’d just like to go up and say, simply, “Hello.” Sometimes they need encouragement to break barriers.

• In terms of “helping”: It just kind of depends on the situation, but here’s one tactic: Offer to help straightforwardly, without the pity stare. Ask “Can I help?”–the same way you’d ask any parent out there who seems like they could use, say, an extra pair of hands. If the answer is “No,” don’t feel bad—the parent probably just didn’t need the help.

ok so 4 years ago

How does someone like me help a special needs parent out without feeling like a jerk? I want to be helpful, but I always feel like they resent the intrusion. ~Mom

Cassandra 4 years ago

What to say when my child is staring or says rather loudly something about a person with special needs would be awesome. Right now I say, for developmental delays, that they are still learning, everyone learns in their own time. But I am not sure for the kids and adults that have more obvious aliments.