Wednesday, June 26, 2013

The invisible mom

















By Sue Robins

In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids. You'll find these same circles at mom and baby yoga, the new moms' group, the kids' hip hop class and community soccer.

In the 10 years I've parented my son Aaron, I’ve never cracked that circle.

I've walked past 
that circle 100s of times and nobody has ever shiftedever so slightlyto give me room to join in.

I’m the invisible mom. You’ve seen methe mom with the son with the visible disability.

This is the part about inclusion that’s hard. Most days I breeze past, pretending I don’t care that I’m not standing with those neighbourhood moms in their Lululemon outfits, baseball hats and ballerina flats. When I’m feeling vulnerable, I put my own hat on and charge past, willing myself not to look up lest my eyes fill with tears.

This is what different feels likeit lives tight in my chest in the place where tears are born. I’m so intertwined with my son Aaronand protecting him from this painthat my pain gets all muddled up. If I know I’m different as a mom and I don’t belong, how soon before he knows he's different as a kid? Or does he know already? I shake my head and file that unbearable thought away.

I once heard the head of inclusive education for our school board give a presentation about building friendship opportunities for our children. “You parents of children with special needs need to make an extra effort,” she said smugly.

That comment infuriated me at the time and it infuriates me now. She told us to host "extra fun" parties at our house and invite children from the classroom. Her message was that we need to overcompensate for our kids, because they'll be excluded by parents of typical children.

So the reason my son has had only one birthday party invitation from school in the past two years is because I’m not extra-fun enough? If I was super-fun, would my requests for play dates for Aaron get answered?

Instead, my little notes and contact information slipped into backpacks are ignored, and I'm at a loss for words to tell Aaron as to why Matt isn’t coming over to play.

Aaron’s teacher tells me the kids talk in the classroom about inviting Aaron to their birthday parties. But I dig through that damn backpack every evening, and I’ve never found an invitation.

If I could summon up all my boldness, I’d march right up to that circle of moms and ask why they're ostracizing my sweet, vulnerable son. I’d ask them if they’ve ever been left out and how that feels. I’d ask why they are doing that to my 10-year-old boy, who loves Bey Blades, Lego and X-Box just like their boys do. I’d tell them not to be afraid of Aaron, and that if they can’t understand him when he talks, I’ll help translate. That I’d supervise on the play date to make sure things went well. That Aaron is a little boy who just wants to have friends.

It's as if our society has no responsibility to include those who are different. Is it only up to us, as parents of children with disabilities, to force ourselves into their circles and demand social inclusion for our children? Remember: a community who excludes one is not a community at all.

I do know that Aaron needs to feel beloved. (And so do I). Because that’s what we all crave in this world.

Late Fragment
By Raymond Carver


And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

Sue Robins is a writer, speaker and mom of three in Edmonton. Her youngest child, Aaron, 10, has Down syndrome. Sue consults on family-centred care with children's health centres, and has spoken to health professionals around the world about partnering with families, the value of peer support, and how to meaningfully engage families in the health system. Two of her essays about Aaron have been published in the Globe and Mail.

79 comments:

I get this; oh boy do I get this. My Charles (by most everyone's account) is fun, funny, a good friend and yet, the invites are invariably one way. And I find it hard to be nice to these moms that talk about how great he is one second, but allow their kids to exclude him the next. When I was a kid, my mom had a rule that if someone invited me to their party, that I had to invite them to mine. I kind of hated it at the time, but oh, do I understand it now. My kid IS FUN. It's sad that most people will never know it.

This is a devastating piece. And the people who need to read it? The head of inclusion and the Lululemons.

Hi Amy -- thank you so much for commenting. I think this piece resonates with MANY of us! How old is Charles?

I'm glad Sue shared the comment from the board person. Because when asked how parents can promote their children's friendships, I've repeated that statement, about making your home a super fun place to be. That was the advice I was always told and read on the topic. We used to do things like have random parties and Halloween parties each year. But there is something about putting the onus wholly on the family of the child with disability that wrankles me. Thanks for writing! And you are so right that the saddest thing is how so many will never know our kids the way we do.

Sue I am so sorry you are having this experience and I agree the onus should not be on the parents to create opportunity.
Often when i read here,vI think I have different, very low, expectations from others who have commented. Surprisingly, my child's class and parents have been very accommodating. The fact is that I don't expect them to be. I am grateful that the invitations come, but each time sad because I assume they will dry up at some point.
Maybe they will, maybe they won't.
In my typical child's circles people feel left out too.

maybe it's just because I wear my lulus and push my way into the circle ;0 or make my own.

This is the future I am afraid with for my sweet little guy. I often feel the exclusion already from the Mom Groups.

Thanks for writing Anonymous! I think individual school cultures vary widely in how inclusive they are (and more priority is put on the early grades and very little by the time they get to high school).

My son was lucky in the elementary years to go to an alternative school that was small and promoted diversity and social justice and because of its philosophy and high participation of parents who volunteered, it was a very accepting place.

But I think that kind of environment is much harder to find at regular schools and is very dependent on individuals teachers and principals (meaning it can come and go).

It's great that your child has had such a positive experience.

My 9 yr old son is overcoming Autism Spectrum Disorder. He has just finished grade 3 and in all his schooling years has only ever had 1 birthday invite.

I'm pulling him out of public school next year to start homeschooling. Hoping for more acceptance there.

It seems hopeless after 3rd or 4th grade..we had a few invites in K to 3rd or 4th but after that..nada. And we had parties at bowling alleys, roller skating rinks...invite 10 or 12 maybe 3 might come...always excuses. It is sad that our kids are so alone. In school kids were friendly to her, but not friends. It was not for want of effort.

I hear you! Social exclusion is really hard. I struggle with that, too and some days it hurts like hell. I wrote a blog post about my experience (not with fellow mums though) with exclusion here: http://icansaymama.blogspot.com/2013/04/rejection-hurts.html

Social exclusion is hard. It's even more painful when family exclude your child from gatherings, parties, celebrations.

My friend has an eight year old daughter with DS and my oldest daughter just turned five. They have the BEST time together! My daughter doesn't realize that there is anything different about her friend, they are the same size and like to play with the same toys. Perhaps there is the opportunity to find some younger friends for Aaron in your community.

Thank you Sue for bravely putting out there an experience I also know only too well. We began Kindergarten full of excitement and anticipation and yet everyday I walked the gauntlet of parents who after a brief nod, stared at their shoes. Coffee invites never came and after a while I stopped caring because if I didn't care, it couldn't hurt.
I will say now that my son is in Highschool the parents I encounter at events are much warmer and chatty but we now are faced with a hurt I never imagined.
My son has continued school fully included and now when we are at disability specific functions and programs the parents of the children who have chosen to no longer include, blatantly ignore me and even whisper about me to each other. It's like I represent something they don't like to address and I have literally spent the time my son was participating, sitting in my car crying.
How can we expect other parents who do not have children who experience disability to realize they are excluding us when our own biases keep us from welcoming one of our own?

Hi Sue.

Thanks so much for sharing.

It is so hard to be 'different' and the onus has been put on us to educate others, to be the 'super-fun' parents and to work that much harder to just be accepted.

The sad thing about this article is that these lulu lemonheads won't get to know you. They won't get to experience your unending generosity, your great sense of humor, and your impeccable sense of style.

I am grateful to have met you and am proud to call you my friend. You are far from invisible to me.

Hold your head high, be proud of who you are, and keep loving that amazing son of yours with that big heart.

Hugs,
Veronica

I wish that other people understood that we welcome and appreciate questions, sometimes I feel like they feel they are doing us a favor by pretending they don't see our children, or shushing their children who ask too loud. We prefer inquisitiveness to the ignorance.

Thank you for this wonderful essay. I have a child with Asperger Syndrome that I eventually pulled out of school and am now homeschooling. He wasn't getting enough help/supervision in the school and was being marginalized by most of his peers. The funny thing is I had become so accustomed to being the "invisible mom" that even now when I'm picking up my other children from school or attending school events, I always remain on the fringe. I don't want to be a part of that group even though my two other children are accepted and integrated and receive those birthday invitations. When my son was ostracized, I became his comrade, his fellow outcast, and it feels as if I'm fraternizing with the enemy to engage in that mommy chit-chat now. My other kids think I'm antisocial. They want me to be friends with their friends' moms.

So hard. I have the same feelings, but not with the moms of my "special ed" kid...; there I have been fortunate. My youngest (just turned 11 year old boy), the one that is cute, athletic, smart... is the one that gets bullied at school and where I'm invisible with the moms. It happens everywhere.

We are in Seattle, maybe we, and the boys can be friends...he also loves xbox, lego's, his sister with DS and Canada...

Thank you for the outpouring of response to my essay. I'll admit to a 'vulnerability hangover' after I submitted it (see the great Brene Brown for more about that).

I truly feel if we are going to make the world a better place for our children with differences, we have to start using our voices to tell our own stories.

I love the kindness shown in these comments - current and future friends - and join you in sadness for your own experiences with social exclusion.

YES the disability community has to become unified to make positive change in the world. AND the 'typical' world needs to take responsibility for this social exclusion of our kids too.

Thanks to Louise Kinross for providing this safe forum where we can speak our truths.

As a person who grew up with 2 siblings with disabilities, I ask you on behalf of your other children to drop your grudge (however well deserved) and be an active mom for them. It is very easy for the non-disabled child to feel overlooked by parents.

If they're not interested in including your child they're probably shallow and boring. You'd be disappointed if you were included. That's been my experience when I've felt left out, then find out what I was left out of... There might also be a perception that you are not interested in them which may make them not approach you despite a desire. You would know which applies. I think this kind of supportive community that understands your circumstances is the one you would prefer - hope you can find it where you are.

I get it, I skipped 1st grade but was still in honors classes in the successive grades so I never ever fit in until college, and struggled horribly with social anxiety until I grew into myself. But as one of those Moms with a good enough kid with adequate social skills though an invisible impairment of ADHD, another Mom and I who appeared to fit in that circle of Moms made a promise that our two daughters would go to the birthday parties of the high functioning autistic boy in their class at a small private school every single year through eighth grade no matter what. They didn't invite him to their own, because their parties were sex segregated, but darnit, our two kids were the only ones from school who went to Tommy's birthday party every single year with smiles on their faces and nice presents. He was really into Legos, so we got him extremely sophisticated Lego kits, since this kid was smart. The kids are all college (or in Tommy's case graduate school) students now but I hope it made our daughters better people, and they all still are FB friends with Tommy and communicate with him often. When back in town from their respective universities/colleges, my daughter and her friend seek out Tommy for movie dates so it's obviously a real friendship.
In my opinion, parents need to step up to the plate and teach their young children about inclusion; maybe it was easy for me since I felt like a social outsider for much of my young life which I think people who know me as an adult would be amazed to know.

This is so well said. We haven't had this experience at school, since Max is in a school for kids with special needs. But, yes, I've felt it with moms I know in our community. It pained me so much when Max was very young. What would it have taken for them to schedule a playdate? How closed-minded can you be? I've lost touch with a lot of those moms, and have not regretted it. Thankfully, the mother in my immediate neighborhood are very welcoming to Max.

Thank you for sharing this. I linked to this eloquent post from the New York times as a mom of young children. I have always been under the (apparently incorrect) assumption that my mom acquaintances with children with special needs are too busy and wrapped up with the needs of their kids to be interested in idle socializing with anyone outside of their already-established social circle. Also, I'll admit my ignorance: I don't even know how to talk to those moms about so many normal mom-things - how can I possibly show excitement about Jordan being on the hockey team or complain about him getting a C in math to the mom of Joey who still struggles with motor skills and can't yet do math? How do I sensitively engage in that conversation without appearing shallow, oblivious, insensitive, ungrateful, and/or all of the above? Please help, would appreciate guidance. The birthday party question is really just a given in our family - invite and accept invitations. BUT clearly I need to work on including the moms just as much. Thank you again.

Thank you for writing this piece. I've had an life-long aversion to cliques and exclusionary behavior. As a child, I always reached out to the kid who didn't have anyone to sit with at lunch, who was bullied, who had to wear leg braces, or who only had one pair of pants... These kids became my dearest and best friends. I celebrated their birthdays with their families, I had them over for sleepovers, and the empathy that initially drew me to them was replaced by genuine happiness and gratitude for their companionship. Now, I'm a stay-at-home mother of a 20-month old. I don't belong to any mom groups because after a few meet-ups, I found them to be too judgmental and cliquey for my taste. But I'm always looking for like-minded moms to have over for play dates (my son is very social). The other day while at the park, I saw another mom with her three boys-- An older child of perhaps 4, and a sweet set of twins who had some physical characteristics of Down Syndrome. I wanted to reach out to her. My son loves playing with older kids, and I sensed from her interactions with her kids that she was a caring and fun mom. Her boys were also happy and gentle with each other-- great qualities when trying to find playmates for your toddler! But I didn't want to make her feel patronized. I worried that she would think I was somehow pitying her kids, or that I was just reaching out to her because her boys appeared to have special needs.. I don't know. I just didn't know what to say and I let the moment pass. Now I regret it, even more so after reading this. There is another child in my community who is wheelchair -bound and appears to have some developmental challenges. But he seems to be a sweet kid and I never see him playing with other children, which breaks my heart. I'd love to invite him over. Would you feel patronized if a mom came up to you completely out of the blue asking for a play date? Should I acknowledge his disability and ask about his special needs? I want my son to know from the very beginning that good people come in all forms, and that the kid who may look or talk different just may be your future best friend. I'd also love some mom friends who, like me, don't fit in with the lululem-moms. Thank you again. I won't forget this piece.

Thank you for sharing your insight. As a mom of a kid who has struggled with hearing and speech issues, I remember feeling hurt when I learned that the other moms were arranging play dates. I didn't even know that was something other moms did. I pledge to never become one of those moms who blithely overlooks you. I'm sure knowing someone like you and your son would enrich our lives; you clearly have so much to offer.

Thank you for so many heartfelt comments!

To answer a couple of the questions -- When my son was a child I would have welcomed outreach from another mom who suggested a playdate (someone asked whether a parent would feel patronized if this came out of the blue -- I personally don't think so!)

I think any interest in our kids and ourselves is welcome and you don't have to worry too much about what you talk about. Just show an interest like you would in any child.

I loved hearing about the friendship between the two girls and Tommy.

And one commenter noted how hurtful it can be when your own family leaves your child out. These are all painful issues we wish we didn't have to talk about.

I think Sue's piece has really struck a chord because it touches on a number of ways that families like ours can be excluded.

Sue Adelman -- I clicked on your link -- I love the Sam's Top Secret Journal series that I assume is written by your husband?!! We've included a link to that book in one of our newsletters.

I am sad to hear about the experience your son is facing.

It's amazing how many children/people are touched by being ostracized (or worse) in some way.

Thank you for sharing!


One anonymous commenter brought up how we can be judgmental and exclusionary within the disability community (noting that at disability-specific events she has felt judged or excluded by parents whose children have been pulled out of mainstream schooling while her son has continued in the mainstream.

I think that whenever someone purports that there is only one "right" way to parent, we run the risk of that kind of judgment. When my son was in a segregated setting I felt judged by parents who implied that full inclusion was the "only" option and that I had failed.

I do think that the disability community itself needs to look at how it may stereotype certain types of disabilities and how this feels for affected families. For example, people with physical disabilities often distance themselves from people with intellectual disabilities.

Marissa and anonymous brought up some lovely points (June 30 comments).

I echo Louise in saying that I'd love for another mom to approach me to arrange a play date with Aaron, just as you would with any child. I think asking: is there anything I should know about having Aaron over is a gentle icebreaker to asking about extra needs, and isn't patronizing at all. I'd so welcome questions folks had - there are no bad questions!

Thank you for your voice for so many other Moms and their children. Bless you.

Just a note of encouragement...I pulled my son with ASD out of public school 2/3 of the way through 4th grade. He has only ever had one birthday invite. We homeschool now, and it's the best thing I've ever done for him. Unfortunately, homeschool groups can be cliquey too...so still no invites. But at least they're kind to my face and to his.

From experience, most moms, even those with children with disabilities, will be happy for your child for their accomplishments! They just want to share, and join in. And you can be happy for their children, just as you would any other child who accomplished something different from your children. :)

I so get this and my son has an invisible illness and while people know about it, they have no idea what he really misses out on because he looks "normal". While other kids are going to practice and sleepovers mine is in pain or scared and that's what we put our effort into getting through and not experiencing the fun and innocence of childhood. Simple things you'd think kids all do he has missed out on and other people have no idea.

This was our experience too, and it's left it's psychological marks on me. All those contemplating home education, hoping for more acceptance and inclusion - it can be difficult at times but we are certainly part of a community now, after a year out of school for my 6yr old ASD son.

Oh boy, this resonated with me but from a different perspective. As the mom of a highly gifted 8 year old boy, I totally understand the feeling of isolation. My son just doesn't relate to most kids his age so play dates can be very difficult to come by. Add that to the fact that when you have a gifted child you're not really supposed to talk about for fear of being called an elitist or being accused of bragging about your kid. (Of course, if my son were a gifted athlete I'd be allowed to brag all I wanted!) Finding other parents to talk to can be equally problematic. Thank you so much for writing this article. It truly does help to know there are others out there going through similar issues.

That principal is just...beyond words. My sister has some developmental difficulties and some kid at the playground told my dad that she couldn't "get Jasmine." I thought to myself, "It's because you lack her awesomeness." Trust me, it's the same with Aaron.

It's been thirty years since I had to walk by the cliques of PTA moms who chose to ignore both me and my two adopted, special needs kids. I can close my eyes and feel the pain all over again.

I still live in town, and I see many of those moms, some of whom now face physical challenges of their own as we are all now in our sixties. Although I try, I just can't muster any sympathy for their problems. My hurt is that deep and that enduring.

So, so valuable...should be read at every Parent Council Meeting...
Thank you

I just wanted to say that it isn't just special needs or gifted kids that get left out. Even a child who simply doesn't want to "go with the crowd" get's left out. My personal experience: I was not special needs, I was not terribly gifted (an average student), but I didn't like to do the same things the other kids did and I was completely left out of everything... No b-day invites for me either. Tough, but survivable. A hard childhood, a lot of tears, but really, I think MANY people feel left out at some point. Please don't think I'm trying to belittle the problem. I see it too. It's a big problem. The only answer I can see is personal responsibility. You can't change the people around you. You can only change yourself and how you deal with them. ♥ and hugs!

Like. My oldest son has disabilities so I've been here. With my youngest (age 5) I tried to engage with inclusion but the school doesn't make it easy. They looked at me funny when I told them I wanted my son to participate. Same school my oldest went to. I was perplexed. Next year I will wander down to see the familiar faces in special ed class rooms and skip the regular ed teachers. Maybe my old friend will pass out invitations to the boys and girls my youngest son's age. Both my boys have trouble with crowds so we don't do spirit night or PTA nights, etc.

Dear Sue and Aaron,
I am sorry you both have to experience this and are welcome at my house for a playdate anytime. I am the parent of 4 regular needs children (in my opinion, all children have needs they are just different needs, like all children are different). My 7 year old daughter was a peer partner/friend in a special needs classroom when she was 3 and 4. When her birthday came around, she invited every student in the class to her party. One mother approached me and thanked me from the bottom of her heart for raising such a special child because her son had never been invited to a birthday party before. I can't tell you how much that touched me and meant to my daughter. To this day my daughter and her son are still friends and my daughter can explain to you the different things he uses to help him. The next time you see a group of moms, walk by with your head held high and say Good morning, isn't it a gorgeous day and keep going. Don't let them ruin your day!

Your comment made me tear up! I don't have a child with disabilities you speak of, but I have a child who suffers anxiety horribly, and I believe other undiagnosed emotional/mental illnesses which all seem to lead to terrible behavior at home, and super dramatic behavior at school. His outbursts and anger, and often my reactions to it, have long left me feeling just a bit different than other families/moms at school. I know this is sometimes just my perception, and sometimes the painful truth. This year was our first year participating in a home school co-op, and I do find more parents are understanding there, but people are people, and we joined late, leaving me often feeling on the outside of things. Like someone else commented earlier, I often shove my way in if I feel it will help my kids. I did that this year by bringing a bunch of fundraising projects into this new school, and by volunteering to help at most events, just to get to know people more. And because this is such a whole family oriented program, the more visible I was, the more visible my children were. And a lot of women there like and include us. Back to your comment to Sue (which I immediately side tracked from!), I know that as much as we want our kids to be included, we really want and need it for ourselves. Your kind words completely conveyed your love and admiration for your friend, and reminded me that I have friends like that, too, they just aren't really through school. That is okay. My friends love me and my kids, despite of our many flaws!

What happened to the days when parents invited the entire class to a Birthday Party? Is it just the economy? My husband wishes inclusion classrooms were not the norm these days because it would be nice for our two children to be party of their school community.

You know... as a child I was the one ostracized - I was the different one. I had the mom that was my best friend. But my mom didn't hide me from the pain, we talked about it. She helped me understand that they way I felt was something I never wanted someone else to feel. She helped me not get angry. Emotional, sad... LONELY? ABSOLUTELY. But I learned early on that others either didn't see because they were too aware of their own needs or they did it on purpose from either their own pain or learned behavior. All were area's I learned to have pity for the others first... then as I got older that turned more into sympathy and then compassion. My mother taught me that my value was not based on what others thought of me but of what I thought of me. Was I a kind person? Was I honest? Did I have integrity? Could someone trust me to be a true friend? Was I trustworthy? Did I look beyond myself? Was I aware of others in need and did I reach out to them? etc. She taught me to step out of myself and look back in... was a person of value. She helped me learn about others who had been ostracized for a disability or difference by others, teachers, peers, etc... but had developed in to REMARKABLE individuals who helped make a difference in the world. Then as I grew older in 6th grade I remember learning about Mother Teresa (I am not Catholic) and a statement she said that kind of became my life's mantra... "If you knew everyone's story, there is not a person you wouldn't love." And you know what I believe it. When cruelty hit an all time high starting in 9th grade with a rotting dead 3 pound fish filled with maggots was left in my locker over the weekend, or the can of dog food given to me by all the girls in my neighborhood giving me a gift for my birthday (one I have now heard has been done to others), or by the blood of a dead animal and its carcass smeared all over my front door and left gift wrapped for me (just to give you an idea of what I went through)... I can honestly say I was okay. When I made it through the first of these events and I handled it, I knew I was a person of value and I was someone that could be anything I wanted to be because I made it, I wasn't just like everyone else, I didn't do what they did, I didn't see the world they way they did... and I was so happy that I was me. I don't know why I was so lucky to get the mom I did who taught me to see the world different... But I am different and without it I wouldn't be the person I am. I like who I am. I am one of the luckiest people in the world. -Sheryl

Ms. Robins, From your article I did not get the impression that your son was being ostracized by the children, but you, by the parents. And you are correct - you are being ostracized as well as your son. It is not you who needs to make the efforts, it is these OTHER PARENTS. Everything starts at home, and even though the children at school want to include your son (from what the teachers say) and that they know he likes the same things they do. Obviously their parents DON NOT. Maybe if they were a little more conscious of their actions, maybe they would understand a little more about talking about accepting/including others who are different, and not just doing the "mouthing" of what should really be. Maybe then they would include you, so that their sons and daughters would have more courage to make more of an effort to include your son. Communication is a trickle-down effect, and children mimic their parents. It is people like that "Mom Circle" you walk by everyday, who continue to proliferate exclusion and social stigmas for any individual who is different. Your son is lucky, and so are you and your family. You practice the celebration of diversity every day, and include it in your daily lives. Thus making it normal, not just for your son, but for you. This will stay with him for the rest of his life, and everyone he befriends will take that special understanding with them as well. You, your son, and your family are starting to break that circle. You may not see it in your lifetime, but hopefully he will, or his children will. You have more courage than any of those other moms, who are hiding in that circle. Stay brave and courageous.

One of the best things that ever happened for me and my kiddo was that we got to know other kids and moms in the same boat through his Autism Social Skills classroom. Those moms have been a great support to me, and I hope they'd say the same of me. We hold play dates and birthday parties for our kids (with accommodations as needed for the various needs) and we go to each other's parties, even though those kids are now all going to different schools. As a result, my son has friends and gets to experience the same social activities as everyone else . . . and while it's seldom, he does get invites to other (typical) kids' parties now and then. We always do invite some of the "typical" kids from school to our parties. They often decline - but when they do come, they and their parents are the outsiders . . . and we do make sure to include them. Some of them, I think, freak a little when they look around and realize almost EVERY kid at the party is DIFFERENT, but that's their problem - some of them have thought it's really cool, too, and it's created at least pleasant feelings all around, if not a buddy-buddy friendship. I guess the moral of the story is, screw the lululemons with their foolish shallow ways - and find kids and moms that you have more in common with. It's more important to have friends and be a friend than it is to have friends whose families practice exclusion.

Not only the Mother of a special needs child and the child his/herself, but also the siblings of special needs children as well :(

This is a great post - thank you! My son has a physical genetic disorder - he is a little person. He's only 21 months right now but it breaks my heart when I think about the day that he will realize he's different. And when other children will realize the same - how will they treat him? Inclusion is a great concept - but I am afraid that our future will be like your post reads. I hope that your thoughts are shared by many and that we can spread awareness. Thanks again!

Thanks for this post. I hope that it is shared by many. I am afraid of this being my future - and am sad and afraid for other families in this situation. My son - he's 21 months now - has a genetic disorder that makes him look different. he is a little person. He's a wonderful boy - bright, happy, energetic and has the most magnetic personality. I am so afraid that when he realizes he's different and/or when others realize it, his amazing person will change. I want people to see him for who he is and not for what he looks like. I can only hope that what you speak about is ancient history ASAP. Awareness is key to this change ... thanks again for your post!

I came directly here because the people commenting on Huffington Post don't seem to know any families where a child has special needs. (SERIOUSLY.)

THANK YOU for your candor and for putting something out there that so many of us can identify with.

Hi Erin -- Ryan is gorgeous!!! Thanks for visiting!

Hi Anonymous -- thanks for sharing your story about the moms you connected with in the autism social skills class. And I love that you are inviting some of the typical kids to your parties and giving them that experience of -- everyone's different. It's okay!

Hi Sandra Modersohn -- you're right, this issue of "not belonging" cuts across all groups. That makes me feel positive that we could try to build some understanding more broadly. thanks for visiting!

Thank you everyone for posting comments that show how this issue affects so many people -- kids with disabilities, visible and invisible, kids with anxiety or illness or giftedness, siblings of our kids, kids with no identified disability who have been targeted, parents. Someone even talked about how devastating it is when your own family doesn't include your "different" child.

Thank you for your thoughtful, heartfelt words.

I understand your feelings completely, it's hard not to feel isolated but wanted to turn the coin just a little. I have found there are two distinct type of parents of disabled children and then a whole spectrum of in betweens. One type seem to feed on the negative, they solicit pity and in their own sense of unhappiness, unfairness, coping they put too much energy into the condition until it defines not only their child but themselves. A sign of this is finding yourself constantly mentioning the disability, explaining, looking for connection in the person you talk to. It's a slippery slope and such an easy trap to fall into, I mean it consumes your mind, you are living it, feeling it every day but I think that filters through into who you a. I mean those mums at the school, they are just people. They are busy, their husbands grumpy, their children have been naughty that morning, they've put on a bit of weight. They are doing whatever they do in their lives and got o the school quickly catching up with others in the same boat. Maybe they feel awkward but more likely they want it be empathetic but Indy grown as you approach. Misery on legs. I'm special but it's not nice being this special. Poor me. They probably even feel a bit guilty for feeling this. I mean they want to be nice. S,they are not as tired as you? Don't work as hard as you? Who cares. Stop comparing we all have our cross to bare and until you stop carrying it like a sword it's unlikely anyone will get close. The other side of the scale is the mum of a disabled child that has all those same challenges but who is able to be general and positive even when it's hard. Yes they may occasionally get upset at the school,they may talk about their child. That's normal butt they are not cloaked in it. I am so lucky with my child, she's just perfect. She may not be exactly the same but she's "normal" enough. Lucky me! Aren't I clever. You know it's not about me. I'm determined that she will learn resilience and to see the good things in life. We are all deserving of happiness so I did the big parties. I stopped work and spent more time at the school until people knew us and we were part of that community. There are lots of disabled kids and their mums at our school. I hope none feel like you. I think the persuasive disordered are harder and I'm going to make a huge effort to see that I'm not guilty of exclusion. This articles gave me a lot to think about. But remember to look inward as well as outward as the answer may be in your control.

When my son was two we were still signing, he had been diagnosed with sensory integration d/o and other delays, and had years of therapy to learn to touch wet things, ride a bike, balance, etc. He was put into regular classes at age 6, but along the way (maybe because he needed extra time and help?) he became very sensitive, empathetic, and patient. He has stepped up to the plate several times to help classmates who have struggled socially due to learning delays, Asperger's, DS etc.

I have never been prouder of him than in 3rd grade, when his friend with Asperger's was over at our house and I heard the boys "practicing" telling jokes, which was something Alex really struggled with, because he took things so literally. My son would tell the joke; Alex would say seriously,"I don't understand why that's funny," and then my son would explain it in more detail, several times if necessary, so that Alex could "get it." They also practiced having back and forth conversations about video games, grades, movies etc. so that Alex would feel more confident talking to new friends. Fast forward to middle school, and Alex is doing great, holding his own in classes, has neighborhood friends to run around and ride bikes with, and is more relaxed in social situations involving new kids or adults. Of course I don't think my son was the only factor helping Alex's social skills, but I do like to think that his empathy for Alex at school helped the other kids to see that nothing was lost if everyone was included in playground games, school projects, Field Day, etc. I remember being afraid to stand up for kids like Alex when I was in school (I was pretty shy and always worried about having perfect grades, ugh) but I didn't want my own children to hesitate when it came to reaching out and being a friend.

I am the mom of a teen boy with ASD and aggression issues. I am currently in Grad School and this very topic is what my thesis is about. I am intrigued by many of the comments as well, and wish there was an 'scientific' way I could include ALL of this into my research! Thank you for sharing - all of you!

Hi Amy,

I have 2 sons with Autism and PDD.
I am the invisible mom like you.
They've had 2 playdates (one playdate each)in the past 10 years.
The most frustrating aspect is that the principal and teachers always talk about how inclusive and hw much they appreciate diversity..but they don't.
Thank God my sons have each other to play with. But it still hurts to feel left out.
Thanks for sharing.

Someone else mentioned it above, but I still thought I would add my comment. It's not just children with disabilities that are excluded :-(

The public elementary school system is just a mass of clique of moms that pass these views onto their children who then bully and ostracize any child who is different. Whether because they don't where the latest designer name, have the right haircut, or a disability of any sort.

My 11 year old son was told the other day that the kids were not going to play with him because he was FAT the other day (he's not)and the little boy two doors down (who is very skinny) is watching his 'calories' so the girls will talk to him.

I am an advocate for inclusion (I grew up working in community living and aside my mother who advocated for the closing of institutions and resources for infant development in the 80's, but I homeschool my children who I pulled out of school and it was the best decision I ever made.



I feel badly but sometimes I minimize Max's disability by just saying 'his legs are not like yours ...they are not as strong as yours' I know that I do it in the hope that kids skim over the difference and move on to including in. Being a mom with a child who is different is like being the great pretender sometimes around people who don't know you and even those who do.

My heart aches for you Sue: I have shared your experience exactly as you have reported; with one exception. Everyone came the day of my son's funeral... Chin up, hope you find strength. Still a Mom of special needs

Inclusion begins in our the hearts and thoughts. Then, Inclusion is evident by our actions.
Inclusions begins in the parking lots and walks along the school grounds and opens the school doors school and streams down the school hallways.
Inclusion reverberates.
Inclusion begins with school Administration, Educators, and Staff.
Often, Inclusion begins with one Student reaching out to understand, accept and INCLUDE a schoolmate.
A school's PTA may a good avenue to drive home the need for a more INCLUSIVE school environment.

Dear Sue and Aaron,

This is exactly why I did the film - http://www.flippingtheswitch.org

Please have a watch, the trailer and backstory.

The message is based on an experience we had when Florentina was in grade school - her class was at the park celebrating a birthday and she was the only child not invited.

I am happy to bring our film to your school / community.

Sending you love and oneness, Andrea
andrea@florentinasong.com

Sue - thank you for sharing such an important story - it completely spoke to me! I have a son who has moderate to severe hearing loss and wears bilateral hearing aids. We used to live in NYC and I had many of the same thoughts and experiences that you shared. We moved to a smaller community a couple of years ago and have found a slower pace and way more acceptance. He has found a small group of friends, and I have found a supportive group of moms. Comments such as those by the head of inclusive education are disappointing, there needs to be much more education to the community at large - some people get it, but so many others don't!

I think SN parents have to be careful to not see exclusion where there may not be any. If a parent regularly walked past me, without smiling, stopping to make conversation, and actually went as far as putting their head down I would take that as a very strong 'leave me alone' sign. Equally, I would find making a play date very difficult with someone who wasn't friendly enough to come and say hi first.

I would be interested to know why the writer of this piece thought the emphasis must be on the other mothers to reach out to her. I think this is more about how human friendships are developed and very little to do with special needs... perhaps with the exception of the writer's perception that the other mothers *would* treat her differently because of her SN child.

When my child started mainstream school I went out of my way to be friendly. I joined the PTA, made a point of smiling at everyone, stopping to ask how they were, how their child was getting on, simple things. I did the same for my first and my second child too. They don't have special needs.

I did recognised that people may not quite know how to approach me, but equally I didn't assume that they would exclude me. Had I stood by myself not talking to anyone or making eye contact why would they talk to me, if I had a special needs child or not?

I wonder what would happen if they writer walked into school on Monday morning, said 'Morning ladies, how was your weekend?'. She might be pleasantly surprised.

This. Only, in my case, the mom with several kids who have 'issues'.... and it's not about me. It's about them. My kids have been in mainstream classes all along, included to a point... but you know what? Not a single one of them has ever been invited ANYWHERE. EVER. Do you know how hard it is to know that your kids aren't invited to the kids at school's birthday parties? Or to the homes of 'friends' from church? EVER. The pain I feel for them is beyond words. I don't care if I am invisible... but I'm so tired of my kids hurting because someone else has a party, and they aren't invited. I tried having a super fun party for one of my kids at a terrific play place... you know how many of the 15 kids I invited showed up? 2. TWO. You get to the point where you just stop trying, because you don't want the kids to see the disappointment on anyone's face. And you don't want them to see how sad it makes you that kids don't or won't show up. We're not 'good enough' to take time for. THAT'S what we see.

I wrote a long comment and it for lost. Basically you need a circle who will understand you and will make lasting relationships with your child. You dont have in common the same things as those mom. They will never get it till they walk in your shoes. I get it because I wear the same shoes. My son had downs and is 16.find moms with special kids. There's tons of us out here. You can start here with me.but we dont have a circle, we have a heart.

This is so heart breaking. You said exactly what I am feeling. I am that mom who goes the extra mile to plan big parties. My son is now 13 and since Kindergarten we have thrown a birthday/end of school year party for my son. This works out perfectly as his birthday is the last day of school. Last year the party got so big, we had to rent a hall. We have a DJ, supply all the food and provided a photo booth. I'm not saying this because I want to toot my own horn but to let you know, you can do all this in hopes that in the long run it will help but........to this day he still has not received one party invitation, one phone call, or invite to just hang out:-( We will keep on with the end of the school year parties for my SON! it is his day. The other reason we keep on is it is a way of educating people on disabilites and the importance of inclusion. Taking that fear of working with them, or being friends with them away. I do get frustrated but I need to remember why we are doing this.......my son and every other child out there! Thanks for listening.

I know how you feel. Even with my children being average I still was not accepted BECAUSE I was not born and raised in the area. Pennsylvania is very closed minded with new people and I have been here since 1973. Live in PA Dutch country and acceptance is nill and if you are Catholic. Someone told me thagt I would not be accepted and my children will not be accepted but my grandchildren will. So far it is true.
Now I adopted a special needs girl (family adoption) and I am starting again. Things to do to be accepted if you want it:
1. Join the PTO
2. Volunteer at the school. I volunteer at helping students, book store, school store, Christmas store, School Fair etc.

Those are ways I am accepted. You have to go to meetings and volunteer.

I have twins, one with multiple needs. They go to different nurseries and even at the age of 3 I notice that my son who goes to mainstream has many invitations to parties, while my other son has not received any from his special needs nursery that he has attended for almost a year. I am going to break the trend and invite all seven of his classmates to their party in a few weeks.

"I think that whenever someone purports that there is only one "right" way to parent, we run the risk of that kind of judgment. When my son was in a segregated setting I felt judged by parents who implied that full inclusion was the "only" option and that I had failed."

Yes, yes and YES! Thank you for this post and for for the great discussion. My son with Ds is 27 now and I've felt this way his whole life. He never got invited in school, and now I see so much discrimination and exclusion - hurtful comments - from within the disability community that it continues to make my heart hurt. I really believe that there is NO ONE way to be right and we each have to do what's best for our family.

As parents of adults who have Down syndrome we've created a community for ALL perspectives to share and learn from each other. The one rule we have is that EVERY perspective is valued and respected. We have to learn from our own exclusion and find ways to change the world - even if it's with small steps like creating inclusive environments for ourselves as parents.

Good luck in the future and trust your instincts!

my daughter Isabelle is 8 years old. She is now in Grade 2 she has been at the same school now for 4 years. Isabelle is in a wheelchair and can't talk she has her own way of communication and its extremely hard to understand her. the mums at the school we're OK for the first year in kindergarten because they were curious about Isabel. It's like because she has not progressed they're not interested anymore. One lady asked me what the point was to keep her at the school. I said is about interaction with the other children it's good for Isabelle and the other kids. She said Isabelle could be a big distraction for her son.I just ignore ladies like that. I'm 29 and a single mom and it's hard enough.my daughter is an amazing girl and those children's parents are missing out. I think Isabel has had two invitations and the last 4 years of her at that school.I'm a very proud motherand I raise my head so high and smile as I walked past us ladies.I am extremely scared of what happens after Elementary. I'm not sure how the other kids would be with her. I think after grade 6 I might just have to homeschool.
Thank you for you post. And it is nice for me to vent a little too. Xo

We have been homeschooling my ASD son for 7 years and it isn't any easier then public school. They are still very cliquey. My son is 14 and hardly an invite to anything. It breaks my heart.

Trying not to cry as I was reading your story. It brought it all back for me. My son has Autism and is now 18. He developed Tourette's at age 13 which makes things even harder. The one birthday party he was invited to once in grade school ended with him stripping off his suit and running down the slip and slide the kids were all doing out on the front lawn of the peoples house,,,right on a main road (of course) . . He had no more invites to anything after that for many years....What helped for me FINALLY....and it took until up to High School was getting to know other parents with kids with disabilities. Suddenly, we were getting birthday invitations...and the best part is they GET IT when your kid has a hard time at that party as so many do with so many different issues with things. These parents and their special kids know too that I WOULD TOTALLY UNDERSTAND if their kiddos had a tough time at a party at our house. There is comfort in that. The "typies" as I so affectionately call them do not get it unfortunately, but they will never know the unconditional love that we special needs Mom have.

Do you know what breaks my heart? Humanity is lost upon those with closed minds. I don't just mean those who could NEVER understand the love a mother (or father, won't leave them out) has for their child with special needs. They will NEVER know the absolute unconditional love a special needs child has within them. I don't have a special needs child, but having worked in a grocery store I had gotten to know quite a few parents who do. Every time I saw those kids come in I felt BLESSED because they renewed my hope in the future. No, not the parents, the kids. Cliques are horrible. But I wonder if a positive can be turned out of a negative. Could it not, would it .. I think it could be possible ... Start your own "circle" of home study or home schooling groups of your own? I've never done home schooling for either of my kids so I'm not sure if you have to go to a specific building or what. I would imagine they aren't classroom settings as they are in public school if you do .. BUT!!!! Either way, start your own clique. Go that "extra mile" but not for the hob nob better than you moms who so proudly keep you out of their fun. I guarantee their fun isn't half as fun as getting a beaming screaming squealing smile from a special needs kid ;) I know, I miss those smiles from those kids

I'm grateful that people continue to post such honest and thoughtful comments. It saddens me that this story resonates with so many of us, no matter what kind of community or school our child goes to. Thank you for sharing your stories and ideas.

My son is 28 now but I can so relate to this piece. Why does it always have to be the family of a kid with disabilities who has to do the pushing?? We are busy enough. In all the years of school, my son had 1 invite to a party & I can't think of a play date at all. My family has never seen him as anything other than difficult and even with them he was never invited to his cousins birthday parties. The excuse was always that he would not know anyone & may make a fuss.
No surprise then that he now has massive difficulties relating to people & fitting into society. This is a feature of his disabilities but has been excaserbated by not being able to be trained out of it as a kid. He is so isolated & pushed to the margins & believe me he feels it strongly.
This is a horrible thing to do to a human being. We are social beings that crave company. This is like torture or punishment for being different.
I despair of what we are doing to people in our communities. So much for family values etc.
Rant over, going back to my bookwork.
Best of luck Sue. I hope it works out differently for you & your child.
Cheers
Lush
Worthing, UK

WAIT until he is 25 and still has had only 1 party. MY SON had two parties (NO ONE CAME). I feel for him. He is in Day Hab now and still has problems trying to fit in with all the other special needs. I even tried to have cup cakes at school one time, the teacher said that it was okay UNTIL I got there and then said that they would not have the cup cakes that day because he could not remember his phone number. They would have them some other day. SHE did not get the cup cakes.