Why You Shouldn’t Pity Special Needs Parents

The other day, I read a piece on The Huffington Post about stuff people needed to know about special needs parents. The writer, Maria, mom to an adorable three-year-old boy with a chromosomal disorder, was candid and honest in the way that blogs tend to be. As a parent of a child with special needs, I related when she talked about how tired she got at times and how offensive she found words such as “retarded” and “short bus.”

I felt sorry for her by the time I finished reading what she’d written. I am sure many people felt similarly bad. It’s something parents of kids with special needs constantly contend with: extreme pity. I’ve seen that look—the cocked head, the “awwww” when I say that my son has cerebral palsy. “Wow, that’s tough,” people have said. “It can’t be easy for you.”

And it’s true: My life isn’t always easy. Sometimes, it’s pretty hard. That’s why it’s comforting to trade notes with parents who have kids with special needs. But what I don’t want is pity from parents of so-called typical kids. Pity means that I stand in an inferior position in life than they do. Pity means that I’m dealing with a tragedy. Neither thing is true.

And so, let me explain why you shouldn’t necessarily feel sorry for me and other parents of kids with special needs. Although if you’d like to take us out for mani-pedis and/or give us large chunks of money, that would be fine.

Don’t feel sorry for me because my life is tough. So, yes, I am like a human Google calendar, juggling a whole lot of therapies and doctors appointments for my son. But I am lucky that I’m able to get my son, Max, most of the services he needs. I push for what I can get from his school and our insurance company; I take on extra work to cover the rest. While parents of kids with special needs have financial hardships other parents don’t have, a lot of us discover resourcefulness, smarts and drive we never knew we had. We push and advocate and push some more for our kids. We become superheroes, able to leap tall buildings and fight the insurance company claims department in a single bound. While you are all still welcome to give us large chunks of money, one of the best things you can do if you have a friend with a child who has special needs is share resources. One of my good friends is always emailing me about activities for kids with special needs.

Don’t feel sorry for me because I’m not living the motherhood dream. Yes, things turned out differently than I expected. Max had a stroke at birth; until then, I thought only the elderly or the people who regularly consumed double-bacon-cheeserburgers had strokes. But you know what? My son brings me as much joy as any child brings a mother. Max has a younger sister, Sabrina. Both my kids make me laugh, both give me pride, both make me thankful every single day that they are in my life. So maybe I’m not living the Hollywood mom dream but a tear-jerker, this ain’t.

Don’t feel sorry for me because my child isn’t a “typical” child. Max may have disabilities but in many ways he is like other kids. I get the full range of kid-ness—the cute way he moves when he dances, the thrill of progress notes his teachers send home, the tear-my-hair-out moments of sibling rivalry. The whole shebang. I love this child. I wouldn’t want any other.

Don’t feel sorry for me because you think my marriage is suffering. Of course my husband and I quarrel. That’s because a) we’re human and b) we’re married. Sometimes, we argue about stuff my friends don’t necessarily quarrel about, like whose turn it is to program the speech app that my son uses. But  basically, we’re happy. That stat you may have heard about how the majority of marriages break up when there’s a child with special needs? Not. True.

OK, you may feel sorry for me because I have eleventy billion forms to fill out.

This is not to say that I never feel bad for myself. At times, I do, like when I have some fun family event or a restaurant outing planned and Max’s sensory issues get the best of him and he has a screechfest. Ah, I’ll think, why does it have to be this hard? Back when Max was a baby, I used to throw myself daily, even hourly, pity parties.

What I’d really like, though, is for you not to feel sorry for me. That way, you can see me as a parent equal,  and treat me the same way you do other parents. You can’t quite do that if you think I’m living an entirely different parenting existence than you are, or you feel that my life is sad. You can do that if you consider me just another parent, trying to juggle it all and stay sane.

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  1. by Tracie

    On March 15, 2012 at 11:19 am

    Amen sister… Amen. ‘Nuff said :)

  2. by Kathy

    On March 15, 2012 at 11:26 am

    I have never had a child with special needs, but I was privileged to be married to a disabled (HANDI-CAPABLE) wonderful man for 25 years until he passed away a year ago. There were challenges, but you know, we made it thru with no terrible damage to either of us. I CHOSE to marry him, knowing his limitations ( in my eyes , very few for the love and blessings I gained in our union) When the limitations got harder, we just hunkered down and worked a little bit harder when it was necessary. I would NEVER regret even one moment with this amazing man!

  3. by Dena

    On March 15, 2012 at 11:52 am

    Thank you for sharing your story. I have a friend with a special needs child and I find myself saying some of the things in your article that I shouldn’t say. I have found it hard to try and relate to what she goes through, but like you said we are all just parents dealing with our day to day things as trying to stay sane.

  4. by JackieFromJackson

    On March 15, 2012 at 11:57 am

    One item here, this should be rewritten for clarity.

    Example: “Parents with special needs”
    The parents are the one with the special needs

    Example: “Parents with children who have special needs”
    The children are the ones with special needs

    You always put people first, their issue or problem next. As this is written above you have to ‘figure out’ WHO has the ‘special needs.’ Hope this helps.

  5. by becky

    On March 15, 2012 at 12:05 pm

    I have an 8 year old ASD son and I completely agree with you. I don’t want pity at all. My son has taught me so much that I wasn’t sure I was capable of.

  6. by Christine

    On March 15, 2012 at 1:16 pm

    Ellen, I think this a fantastic article…it’s completely opened my eyes to something I’ve never even thought about. As a mother of a “typical” child, as you put, I admit when I would see families with a disabled child, I would feel sorry for them, that their struggle must be so hard and exhausting, that their medical bills must be so high, etc. But you’re completely right, you struggle, juggle and parent just like everyone else, you just have some different and/or additional things to deal with. I think instead of feeling “pity” for parents with special needs children, we need to look at them the same we look at families with triples…we feel for them. We feel for you the way we feel for new moms struggling with the terrible twos for the first time, or the mom who has an infant, toddler and preschooler and is trying to grocery shop. We dont pity them, we feel for them because we know what it’s like. But at the end of the day, we’re all parents and we all empathize with each other or share that same smile when a child does something new for the first time. Ellen-I don’t pity you because I don’t look down on you. I feel for you as a fellow parent and know those great moments, those stressfully moments and those difficult moments are all included in being a mom.

  7. by Singh

    On March 15, 2012 at 1:26 pm

    Life always gets busier as soon as we have kids. But with so many things going on, we enjoy the biggest joy in the world, to be a mother/father.

    Life becomes heavenly wonderful with kids.

    Some kids needs special attention but I think that is something GOD has already written somewhere. All we can do is accept the challenge and work harder.

    I miss my Mom

  8. by Chantal

    On March 15, 2012 at 1:30 pm

    Wow …I love you and thank you for saying that for us all. (or at least most of us) I am a happily married mother of two beautiful kiddies. My youngest Joshua is 2 and a terror and my oldest Gillian was born with Right hemiplegic Cerebral palsy. I had my pity parties when she diagnosed at 8 months old when I was unsure if she would walk and talk and now I have them less and less as I see what a delight she is becoming and how bright she is. I hate when people use negative language to identify my “other than average” child. She has different needs but then again so do many of us in life. I attend University in Education in an endeavour to become a teacher and daily I find that it is my role as a student/parent of a child with different needs to speak out for those who are being effected by our education system. So many teachers in training are not equiped to deal with the children that are being put into their classes and it scares me. I don’t want the awww good for you speech I just want them to listen and try to envision what it must be like for those children for whom learning is slower and/or harder.
    Anyway, Thank you again!

  9. by Robin

    On March 15, 2012 at 4:46 pm

    I think you are making a huge mistake in downplaying the difficulty of parenting a special needs child when the special needs population is already so poorly understood and so poorly funded. My special needs child IS much harder and more expensive to raise than a typical child. Maybe yours isn’t but you are not doing any favors for those of us whose children are. And don’t just write me off as a parent with a bad attitude. I doubt you would find anyone that knows me well who would agree with that.

    I work extremely hard every day using the many talents and abilities I already knew I had. In our state, therapy for children with autism is not paid for by insurance and there is a five year waiting list for inadequate government assistant. We were out-of-pocket nearly $150,000 over that five year span. I spend countless hours managing her therapy, staying up with her at night and even just flat out feeding her about 2 hours a day. My husband and I get about 30% less sleep on average which interferes with our functioning and our health. The list of things that we are prevented from doing with or for our typical children is enormous. Her disabilities have a profound impact on almost every aspect of our lives. Yes, there are a few benefits but they are far outweighed by the downsides.

    During our toughest times (most of our last two years), her conditions (she developed severe Tourette’s and severe anxiety in addition to autism) were so intense, self-injurious and difficult to manage that it pushed our family into crisis. Her own body tortured her for many months while we waited for appropriate diagnosis and medication. Even with those symptoms now controlled, she is very limited. She will never marry, have children, or even have real friends. At her best, she communicates at the level of a 26 month old. She is often unable to even communicate symptoms of pain or illness. I can’t let her more than a few feet away from me in many public places because she will just walk off, won’t respond to anyone calling for her, can’t communicate with any strangers who might help her, and doesn’t even really understand that she needs to stay out of the street. For those of you without a special needs child, or with a child with lesser needs, try putting your typical child in that position. I would certainly call her conditions a tragedy. It is a tragedy for her and for her parents and for her brothers.

    I don’t need other parents to pity me, at least not the way you define it. There is nothing inferior about our family or any it’s members. But I do need understanding and compassion. I need other parents to know that when I say I can’t volunteer for the PTO or other school activities it is because I really can’t. I need the neighbors to know that when the lawn isn’t mowed or the weeds are taking over the garden it is not because we are lazy or slobs. It is because the people inside our house are in much greater need of my attention than the landscaping outside my house. And mostly I need society to know that the stresses of raising our special needs child are not even close to equivalent to the stresses of raising a typical child. We were able to pay for therapy because we had been living well beneath our means but that is not true for every child. I know people that have taken out second mortgages to pay for therapy and, even worse, I know many children who didn’t get the therapy they needed. Your article downplays the very real and underserved financial, educational and social needs of a very large portion of special needs children.

  10. by Ellen S.

    On March 15, 2012 at 9:19 pm

    Thanks to those of you who understood where I was coming from. Kathy, that was inspiring to read.

    Robin, I am sorry for your hardships. My post wasn’t meant to detail the challenges of raising a kid with special needs, which are many. My point was about not wanting pity for my circumstances, although I am all for compassion and understanding. Pity doesn’t do me or my child any good.

  11. by Robin

    On March 15, 2012 at 10:29 pm

    Ellen – Whether you meant to or not, from the title to the last line, one primary effect of your post is to downplay the difficulties of having a special needs child. That may not have been your intent but just read the comments by Dena and Christine for examples of its effect.

    Many parents of special needs children ARE living an “entirely different parenting existance”. Too many people already think “that I am just another parent, trying to juggle it all and stay sane.”

    I can’t think of when we have been the object of pity. Maybe that is something that is more common for parents with a child that has a visible disability. We, and the other families I know with ASD children, have far more trouble with people expecting our kids and our families to be just like everyone else which is what you are advocating they do.

    I am not asking you to detail anything. I am asking you to please be careful about over-generalizing. And I am asking you to be careful not to presume to speak for all parents of special needs children, especially in a way that may undermine the little sympathy and support parents with special needs kids get.

    You are a widely-read writer. As they say, with great power comes great responsibility. Please be careful about the ways you influence public opinion.

  12. by Alison

    On March 15, 2012 at 10:47 pm

    My oldest son has a chromosomal disorder and autism, etc. There is a reason the divorce rate is 80-90% for parents of kids with autism. It’s so stressful. If pity leads to others lending real support to parents who have kids with special needs, then I’m all for it. If I could go back and have a healthy child, I would, for his sake and for the rest of our family.

  13. by tammie

    On March 15, 2012 at 11:43 pm

    Pity, I pity those with typical children, why, because their lives are dull and mine is full of adventure and the ability to advocate and acknowledge of the needs for an education. I am grateful for my life, I know my child will excel because he has two wonderful parents that love him and want him to succeed, we will support him, we will advocate, we will endure for him.

  14. by Betty

    On March 18, 2012 at 11:10 pm

    I am a mom of three special needs children and I have never experienced any pity. My oldest is 8 and has bi-polar with autistic tendencies,adhd,odd, and ocd. My second son was pushed out a 2 1/2 story window by his older brother at 2 years old and has brain damage. My youngest was born early and has global delays but no diagnosis yet. I agree with robin when people see my 8 year old who looks typical hiding under a table banging his head on the floor I do not get a look of pity. The only thing I get is people staring and even telling me how I am a bad parent because I cannot control my son. I do not get pity from people. I fight to let people know my sons are different then their kids and no I cannot parent the same as them. We cannot do play dates or sports instead we do therapy’s. I love all my children and no I do not want pity but I would take pity over people thinking I am a bad parent. I also was one of those people who divorced because of everything that was going on. My ex could not handle it and still cannot handle it. My ex does not even see are sons. So now I am a single mom fighting for my kids, working, taking care of all their needs. I am glad your life has been easier then mine but please do not make it sound like it is easy for the rest of us!!!

  15. by Celebrities News » Blog Archive » Latest Dish!

    On March 21, 2012 at 6:40 pm

    [...] Why You Shouldn’t Pity this Mom – Parents [...]

  16. by The pumpkin | breeder.

    On March 24, 2012 at 7:44 pm

    [...] blog that really hit home. Once again Max’s mom made me feel like I wasn’t alone.  Enjoy. Like this:LikeBe the first to like this post. This entry was posted in Links by Momma. Bookmark [...]

  17. by ListenLoveLearn

    On March 26, 2012 at 5:16 am

    The best support you can give a parent of a child with special needs is to give them your full attention and LISTEN.

  18. by pointing out the obvious which you are studiously ignoring

    On March 31, 2012 at 12:20 pm

    “…What I’d really like, though, is for you not to feel sorry for me. That way, you can see me as a parent equal, and treat me the same way you do other parents…”

    If what you say above is true, then why are you continually asking for people to treat you differently by censoring their words around you? You want people to feel sorry for you enough to not use the word retarded ever again in any circumstance but you still want them to treat you like you are like every other parent. No other normal parent would ask those around them to censor their words unless they wanted special treatment.

  19. by Tamara

    On April 30, 2012 at 7:28 am

    I read the same article you referenced, and it bothered me in the same way. I have a 15 year old son with Down syndrome, and contrary to the responses of some parents here, I *have* been on the receiving end of “pity”. I don’t need it; it’s not helpful. It doesn’t create understanding or encourage the right kind of support for those with disabilities or their families.

    The experience of parenting a child with a disability is not the same for every family. We are all unique – as are our children. We all have different experiences and different needs.

    Obviously, anything that puts all special needs parents in one group can create generalizations that some feel do not apply to them.

    But, I don’t think you said that our lives are easy. I think you said we don’t need to be pitied. And I agree with that. No matter how dire our circumstances, pity isn’t going to get us what we need. Saying that doesn’t mean that we don’t need support or that we need to be judged by those who think we’re just not good parents because of something our kids do.

    No one article is going to exactly reflect the perspectives of every parent of a child with a disability. We’re much too diverse for that. But yours does address an issue that I wish we could all agree upon. Our kids are different – as difficult as that can make some of our lives as parents or caregivers, it doesn’t mean they aren’t valuable members of our society. Respect them, respect their needs, but leave your pity out of it. It just isn’t an emotion that brings forth positive change.

  20. by Kelli

    On April 30, 2012 at 7:49 am

    I loved, loved, loved this! I often get “the pity look” when I am out and about, my daughter has Down Syndrome. I, too, mostly want to be treated like every other parent, there is no reason to feel sorry for me, just like you said. It’s funny, because out of all the things I have to deal with because Emily has DS, the thing I don’t like most is the pity others have shown. Thank you for saying what most of us with kids with special needs would like to tell others about our parenting journey :-)

  21. by Tamara

    On April 30, 2012 at 8:39 am

    To: pointing out the obvious which you are studiously ignoring

    Who said:

    “If what you say above is true, then why are you continually asking for people to treat you differently by censoring their words around you? You want people to feel sorry for you enough to not use the word retarded ever again in any circumstance but you still want them to treat you like you are like every other parent. No other normal parent would ask those around them to censor their words unless they wanted special treatment.”

    I am not as familiar with this writer’s work as you apparently are, but I am someone who feels that the R Word is disrespectful, yet I don’t want your pity.

    Being respectful of other people is not the same as pity – not sure why you think they are connected. Language can be abusive, and calling people “R*ed” certain is an example of abusive language. I don’t think “censorship” is the right word, nor do I think “politically correct” is a good description.

    It’s about being respectful of all people – not just those who are like you. So, if you choose to demoralize others by using language that abuses them, then you are just being rude, inconsiderate, mean-spirited – and most of all, disrespectful.

    The RWord campaign is about educating people who may be ignorant of the impact that particular word has on people with developmental disabilities. It isn’t about creating pity. Many people use it because they don’t realize that it is hurtful. Some people care about that. Others do not. Those who care about how their language impacts other people tend to stop using terms like racial slurs, ethnic slurs, and denigrating terms about others’ sexual orientation.

    And I think those are the people the RWord campaign is trying to reach. Making them aware makes a difference. And, hopefully, the word will evolve into more of a reflection of the character of those who continue to use it.

  22. [...] New Year Resolutions for Parents of Children with Special NeedsWhy You Shouldn’t Pity Special Needs Parents [...]

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  24. by Disability and Pity « bethesdablog

    On August 28, 2012 at 9:24 am

    [...] Parents, family members and people with disabilities are tired of being invisible and are declaring their right to an equal chance at life. They want to be understood and recognized for who they are, for their humanity…without pity. [...]

  25. by Shaston Thompson

    On February 4, 2013 at 4:01 pm

    I agree with the few that “special needs person” should be reworded to “person with special needs”. “People first” language is important to consider. My daughter is not a “special needs child.” She HAS a special need.

  26. by Bethesda Institute

    On March 5, 2013 at 10:14 am

    [...] Parents, family members and people with disabilities are tired of being invisible and are declaring their right to an equal chance at life. They want to be understood and recognized for who they are, for their humanity…without pity. [...]

  27. [...] yourself feel good isn’t a bad thing. Hell, let’s spread as much happiness about as we can, but the heart of this trend feels like pity. Look! I helped a mentally challenged person! I didn’t try to trip him walking down the hall or [...]

  28. by Funny thing is… | autismlmhc

    On July 13, 2015 at 5:56 pm

    [...] my favorite, that little gasp, followed by an, “I’m so sorry.”  PULLEEEEZZZE!! Save your pity for parents who have lost their children in some tragic way, for the homeless and destitute or for [...]