Single Moms Raising Autistic Sons

city map


Wednesday, January 08, 2014

The Unique Grief of Special Needs Parents by: Sheri Dacon

My boy was smart, and I knew that all too well.  He was high functioning, and I was confident that we would be able to help him overcome any obstacles before starting kindergarten. By the time he started school, no one would even know. They might just think he was a little quirky. Plenty of people are quirky. No big deal.
So I spent that first year with few cares at all, reading a handful of books, learning about social stories and visual schedules and the basics of Asperger’s, convinced that we would be past all of it in a couple of years.

Then kindergarten came, and my world got smashed to pieces. 

Things didn’t work.  The new school, the new teacher, everything we had prepared for. . . it broke faster than I could scurry around and pick up the pieces.  Less than six weeks into the school year, we requested an ARD meeting and moved him to an autism program at a different school.
We are four years further down the road now.  The social differences are much more noticeable at age nine than they were at five.  Instead of getting better, in many ways, the disability has worsened.  
I don’t know what it is like to lose a child.  It breaks my heart when it happens, because I’m not sure if or how a parent ever recovers from it.  Yet I know brave souls who somehow go on after a child’s death.  I can’t imagine what the grief is like.
There is a kind of grieving that exists as well with having a special needs child.  My child is very much alive, and I am so grateful, especially since I have witnessed his seizures and considered the possibility, if just for that split second, that he was dying.
But the hopes and dreams I had for my child die a little more each day as I watch him move forward in life.  When he was just five or six, I had hope that he would outgrow certain behaviors with age, that he would function better.  It was that hope that kept me going.  Yet here we are at age nine, and while some behaviors have improved, others have declined.

It is hard to hope when your child pushes against an ever stronger current. 

Adolescence is just around the corner and it is scary.

The grieving never ends.

If you let your guard down for even a moment, some terrible incident will come slamming into you, reminding you that your child will never be like the others.  He will always be different.  


To accompany the grief, there is its sister–guilt.

Guilt that I did something to cause it.
That I should have noticed the signs sooner, gotten more and better treatment, sought a different course or path.
That I should be doing more, reading more, helping more, trying harder.
That I should spend more time, more money, more effort supporting my child.
That I should experiment with a different therapy, a different drug, a different teacher, a different diet.
And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.
Sometimes it brings me to uncontrollable sobbing.
medium_8025692978photo credit: jazbeck via photopin cc
I can’t make the grief or the guilt go away.
My thirteen year old and I got into a shouting match one day about it.  “Why don’t you and Dad do anything?  Why don’t you make him behave?“  he yelled.
With hot tears washing my mascara away, I argued back, “What would you have me do?!?  I’ve tried everything!!  Please, tell me what to do!!  Tell me!  Is there another book to read?  Another therapy?  Another anti-psychotic drug?  I’d love to hear your suggestions!”
Not my finest parenting moment.
And yet if there was one thing I’d want parents of non-special needs kids to know, it’s to please be aware that we — the moms and dads of those “special” kids — are hurting.
Yes, we love our kids.  No, we wouldn’t trade them for anything in the world.  But the love we have doesn’t take our pain away.  In fact, it just intensifies it.  Because we can’t take their hurt away.  We can try and try and try, and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away.
When you look at us like we are weird, when you stare and ogle, when you move your kids away from ours, or worse, NEVER include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.
For my son’s ninth birthday, we sent printed invitations to school.  We invited the entire special needs class, as well as the entire regular class.  The invitations indicated that we were serving pizza and that families were welcome.  We wanted to make sure people showed up.  So we bribed them with free food.
Fortunately, all my son’s special needs friends came.  We have to stick together after all, because special needs kids don’t get invited to that many parties.

One boy from the regular class came.  One.

That’s enough to just break a momma’s heart right in two.
My anxiety directly correlates to Travis’ behavior.  When he’s doing well, I usually do okay.  When he struggles, I get worse.  I’m sure it could be defined in some complex mathematical formula.  All I know is that when he hurts, I hurt more.

And he always hurts.

So next time you are at the Chick-Fil-A playground, or at a church picnic, or a Cub Scout campout, try looking at those “weird” kids and their parents a little differently, please?  Try to remember that as unlovable as that child might seem to you, the parents are desperately in love with their baby.  They are hurting.
And by being a friend instead of a judge or a finger-pointer, you might just make somebody’s grieving a little easier.
Signature - Page 001 copy - Version 2
  • Thank you. You have so perfectly articulated what it feels like to be a parent of a special needs child. This blessing has demanded that we grow and change in a way that I feels others will never understand, we have the gift of seeing the world in a much more basic way. We are blessed to see what is truly important, to love and to receive love. Thank you for fighting the good fight.


      Thanks, Amy. I agree wholeheartedly that having a child with special needs has helped me to grow and to have more compassion and empathy for others. While painful, it is a unique blessing -- I love how you put it -- a gift of seeing the world in a much more basic way. I feel like my child with Asperger's is how God has opened my eyes. Thank you.


    First, I so enjoy reading your posts. This one made my heart ache for you and your son. I know I'm only one of his teachers, but you are doing a phenomenal job and I so appreciate you. Know that you are teaching the public with every experience you encounter.


      Belinda, you are such a wonderful teacher for Travis & an encouragement to us. We love your heart for special needs kids & always feel Travis is safe & well cared for when he is with you. Thank you.

    Sheri, I am sorry that your grief is relentless, but I understand for it visits me often too. Take a lesson from the boxing ring--when the bell rings to signify the round is over, the boxer goes to his corner for rest and to have his wounds tended to. He doesn't feel guilty that he is not still in there punching away. Enjoy your well-deserved vacation.

      Rubye, it seems like you know this author, so please forgive me if I am overstepping my bounds. I just wanted to point out, your analogy is a good one and I wish I could share your sentiment. But, as the parent of a child with special needs, the bell never rings. The 'fight' is never over.

    I have walked this road too. my son is 20 and there are still times I ache...still times I am angry at God...not for giving me a child with a disability but because It seems unfairt that he will always have to struggle. yes there are times of celebration and laughter and no I wouldn't trade him for anything...but...

    It's good to see that others feel this way too. I tend to run into the parents that don't understand why I feel sad sometimes. They seem to be perfectly content with their child's diagnosis. While I admire those parents, I thank you for posting something that doesn't leave me feeling more inadequate than I already feel much of the time. I felt the most grief during the initial year of my son's life. The day after he was born, we found out that he had Down Syndrome. It's not that I didn't love him, I love him more than anything, but I was devastated. I cried every day for about the first six months of his life. I believe I was grieving the baby I thought about the entire time I was pregnant. I didn't get that baby, therefore I grieved. I guess it felt somewhat (but not exactly) like losing a child. People didn't really understand that, but it was real grief. I used to absolutely hate it when people would tell me what a blessing I was given to have a child with Down Syndrome... I agree that my son is a blessing, but I didn't and still don't agree that him having Down Syndrome is a blessing. I would do anything to take away his struggles. I do agree that there is much joy that raising a child with special needs brings, but there is also a lot of heartache. I always feel like I have to be strong and hide the heartache, because the minute I let my guard down, the corny sayings start, or I get the confused head tilt, "Why do you feel that way?" He's 5 now, and I don't feel as much grief anymore. He's a little sweetheart and he's healthy. Now that's a blessing! We do get a lot of flack for his behavior in school, and we try so hard to help him learn. It's a long process that most people don't understand. In IEPs the educators and therapists seem look at my husband and I as if we are inadequate parents, making all sorts of "helpful" suggestions. I just sit there thinking, "Do they really think we haven't tried that?" I've finally arrived at a place where I'm learning to separate my ego from his behavior. I know how hard I try and work with him. Now I put a little bit back on them. I've learned to ask them questions like, "What tools do you have in place to help him with that (behavior)?" It kinda stumps them sometimes, but it opens up the idea that his behavior at school isn't ONLY the parents responsibility when it comes to a child with special needs. It's an entirely different environment than home, and a whole different set of rules. I know that schools have access to resources (i.e., behaviorists) that can help them too. Anyway, I'm rambling on... thank you for your post.
    see more

      How I wish I could hug you right now! Thank you so much for honestly expressing both your love for your child and the pain that comes with such a diagnosis. I especially feel for you because unlike an autism diagnosis (which usually takes place after a long path of trying to discover what is wrong), a diagnosis of Downs happens definitively at once and must feel like a ton of bricks falling upon you! How my heart goes out to you! If you haven't read a piece called "Welcome to Holland," by Emily Perl Kingsley, please do so immediately! Just do a google search and it will pop up. It expresses this idea of grief mingled with joy better than I ever could. Also, I just finished reading a book by Gillian Marchenko called Sun Shine Down. She has 2 children with Downs (one her natural daughter, the other adopted) and the book is her memoir from when her daughter was born and the roller coaster of emotions she went through. I think you would really be able to relate. Undoubtedly there will always be some heartache that walks hand in hand with his diagnosis but there will be so much joy and love and wonder (as you have already experienced). I have found that many people who mean well but who have not experienced special needs close up often don't understand this dance of grief and joy, hence the puzzled looks. Just know that you are not alone. There are many who do understand and "get it." Thanks so much for reading and for sharing your experiences. Much love to you, dear friend.

    Sheri, I read this and just cried. You put my feelings and thoughts down so eloquently! I also wanted to let you know that there is always the possibility of a light at the end of the tunnel. My son has been diagnosed PDD-NOS. His doctor prefers that diagnosis over Aspbergers because of the way that it can effect his IEPs at school. Kyle is 16 and for exactly a year now we have been non-medicated! We haven't had a violent episode where the Police were involved since March of 2012. He still attends school in the special school district but things are going better than I'd ever hoped for! I wish the both of you and the rest of your family the best. Always stay positive and cherish the moments, good or bad.

      What is PDD-NOS?

        Pervasive developmental disorder, not otherwise specified. It is one of the three autism spectrum disorders and although typically considered to be on the more mild end, this was not the case for my son Kyle. We started getting help for him at age 3. There have been more diagnoses and medications than you can shake a stick at and it has been a long frustrating journey. His doctor also states that he is ADHD. I'm not sure what the turning point was for my son and for many children being non-medicated just isn't an option. There are many days that I think, "don't let this be the day that something bad happens." Even his doctor is amazed when we go for visits. In no way is my son like what most people would think of as a normal child, and he never will be. I worry about how people perceive him and what people think of him but he is blissfully unaware most times. In those instances where it does bother him, he internalizes it and refuses to talk about it. My biggest fear is what would/will happen to him if/when I am no longer here. Will I have prepared him enough for life on his own? What if he cant live on his own, where would he go or who would he live with? And most importantly, will he be happy? Or lonely? I read a comment from another young lady here that stated she had no guilt or shame, I wondered if she had no fear as well.

        PDD-NOS = Pervasive Developmental Disorder, not otherwise specified. It is on the autism spectrum -- i.e. Atypical autism.

      Oh, Kate! I'm moved to know that you found this post so meaningful. It is a hard road, but I am so encouraged to hear that your son has been non-medicated for a year! By the way, I also have a son named Kyle (my 13 year old -- not the son with Asperger's). Thanks for reading and for your words of encouragement!

    "Normal is just a dryer setting"... Please don't take this as an attack, but I'm saddened by how thoroughly autism has discouraged & defeated so many parents. I pray you come to accept your child & their lives' paths without the guilt of your preconceived expectations & perceived failures.
    I've never- not for one single moment!- felt ashamed or pained by my daughter. She is autistic, and perfect. We, as parents of a special needs child, have chosen & committed to celebrating the victories, not wallowing in the defeats.
    Restrictive diets work, one-on-one tutoring works, LOVE works (just don't expect cuddling in return), repetition works, HOPE works (regardless of your child's initial reaction), despair DOESN'T work.
    The pizza party paragraph made me cringe. I urge all parents of ASD kids to get a food sensitivity test done & work with a nutritionist experienced in special needs restrictive diets. You will be amazed. Once you start thinking of foods as they affect your child, you'll be able to identify & eliminate triggers of destructive behaviors. If your child is in pain, it could easily be the food.
    Any successful ASD adult will tell you that their success is directly linked to their parents' relentless pushing, stretching, and encouragement- those 3 words were taken from Temple Grandin. Alexis Wineman told my wife that her parents "pushed and often shoved" her beyond her comfort zone to succeed (that's her quote up there at the start of my rant).
    Pain & Grief for your situation serve no positive purpose in your special needs child's life.

      Thank you for your comment. I am glad for you that your daughter's diagnosis has never caused you a single moment of pain, but I assure you that is not the case for most people. I am sorry if my post led you to believe that I am defeated or in despair, because that was not my intention. I love my son deeply and he brings a level of joy to my life that I would never have known without him. We also choose to celebrate our son's victories and progress rather than wallowing in his defeat.
      However, he struggles. It is hard to watch your child struggle, to cry daily because he isn't accepted. It hurts to know that social situations will always be difficult for him, especially since he is a child who craves relationships (and we feel very fortunate that he does). Grief is the feeling experienced after loss, and any loss can qualify. Knowing that my child has a diagnosis that has and will cause him pain is a loss of sorts, even though I don't feel it is reason to despair. I did not give myself permission to feel grief over his diagnosis for a couple of years, and I feel it is so important to acknowledge the grieving process for special needs parents.
      I also do not feel guilty all the time, but I do think this is something ALL parents struggle with, and especially special needs parents. You say that my pizza party made you cringe, and that is fine, but any time I hear a list of all the things I'm supposed to be doing (restrictive diet, one-on-one tutoring, repetition, etc.), to be honest, I cringe. I cringe because I know all those things already. I've read all the books, gone to the workshops, tried most everything and still felt like I was failing. And that was the point of my original post. We special needs parents can work ourselves to death and still not change the diagnosis, and then we feel even more guilty because we haven't tried everything.
      Also remember that every child, parent, and family are different. What works for one may not work for another.

        I misunderstood. I read despair in your words.
        Our approach to raising our special needs child starts with our attitudes (same as our approach to raising our non-special needs child). Attitude is everything. Hope, creativity, & stubbornness have gotten us this far- if just one parent of a special needs child "gets" what I'm saying & benefits from it, I'll jump for joy.

      As the parent of a severely affected son with autism, I cannot help but take offense to this post. LOVE works??!!?? If LOVE worked, we would not be having this conversation because I couldnt LOVE anyone any more than my son. Autism has taken his voice, his independence, his health,his future, the ability to marry, work, care for himself, Autism has made damn sure that i will never rest in peace. AND YES We have done all of the therapies you mentioned above, because it worked for your child, please don't preach to me and tell me that if I just did MORE i would see more progress. THIS is the attitude that keeps us guilt ridden and isolated. I can say more, MUCH more, but i am too damn tired and too scared of being AMBUSHED by a strong beautiful boy who can throw me across the room and destroy my house in seconds flat. Then when he comes out of it, he sobs uncontrollably and feels so much remorse and gulit. Please point out the blessing in THAT! I am sick and tired of being invalidated by people saying if you just do more. I am beyond insulted and can't believe that a fellow ASD parent would be so willing to throw us who have children on the severe end under the bus. YOU DO NOT REPRESENT ME! And Sheri, i am sorry to hi-jack your beautiful article
      but i am sick and tired of being preached to by people who obviously know it all.

        Sorry that I offend you so much. There's no bus here, and I wouldn't presume to represent you. My job is to represent my child, & I chose to share what helps her- again, sorry that it offends you.
        I see that I was preaching (according to the dictionary), & I will continue to "preach" hope & determination as long as I live.

      You say despair doesn't work. Fine. It's still present sometimes whether we want it to be or not. Love, hope and repetition do work in some areas. Other areas are always going to have deficits, no matter what we try. I'm glad you've found things that work for you. That's not true for all of us.

      From the moment we are born and see that we are different, as in being able to sit, stand, talk, etc, we are all driven to be like others. For me it is inconceivable that the child is not hurting. If the child hurts and the parent doesn't feel it with them, then the child's pain seems to be ignored and taboo. That never solves the problems with others or the future.

    This is the first post of yours that I have read...and it brought me to tears. My story is similar to yours and reading your words made me feel a little like I was being hugged. Thank you for articulating the fears and joys and questions that live in my heart and head every day.

    Heart Rendering and so so true, hang in there Sheri, we all have to ... our little warriors are our lives and our very souls.

    I manage swim lessons that feed into the local swim team. At the end of the session, I send out emails to the parents of the kids who we think are ready to try out for the team. One of our little guys in lessons clearly had autistic "issues" BUT, he was a good little swimmer. I sent his parents an email invitation to try-outs. The next lesson, they came to me sure that I had made a mistake. Their son had been "chosen"; he had been found "worthy" of trying out for the team.
    I assured them that it was not a mistake - their son had earned the opportunity just like the other kids. It broke my heart that their past experiences had conditioned them to expect exclusion. I assured them that I recognized his autism "issues", acknowledged that he would have some special issues with the team and welcomed him to tryout.
    I am happy to say that this little guy is doing fine. Does he have"stuff"? Yep! and he always will. BUT, can he swim? Is he having success? Is he being included in a "normal" activity. Yes, yes he is.
    To the parents of kids with special needs: please keep trying. Keep advocating for your kids. Keep looking for those opportunities. You never know where you will find them.

      Thank you, Denise, for your encouragement and for your inclusive attitude as a teacher. We have been fortunate in our journey to encounter many teachers with the same mindset and we are so grateful for them. Unfortunately, there have been many who have been unwilling to overlook the disability to see the boy behind it! Thank you, thank you, thank you! I couldn't agree more.

    WOW. Reading this sent me into tears. My Aspie is in 11th grade. We're talking SATS and college. He's on the genius cusp. He's so smart. And funny. And amazing. But he hates schools and tests. And all these *dreams* I had for him are unlikely. We will be relieved if he makes in into local state college. I should consider myself lucky. Things could be so much worse. But he's brilliant and amazing and *should* be doing something more.
    My friends don't understand. They just see this smart kid. They don't know the daily struggles would never understand.

      Terra, your son sounds a lot like mine in a few years. Definitely in the genius category and yet he struggles so much socially. It's good to know there are other parents out there who "get it." May God bless you as you continue to parent your Aspie, and lead him to the right path for his life as well! Thanks for reading!

    Just to help you feel a little less separated, I recently had my son's birthday party and only 3 of the invited 15 showed up. He has no special needs and is well accepted in his class. Parents these days just don't bother showing up or even RSVPing these days. I don't know why. It's nice to know that the special needs class all showed up and that involved parenting and community support still exists somewhere!

      Thank you, April! Yes, we have dealt with similar issues with my other three children as well--however, none of them deal with the problem of being stigmatized that my autistic son does. It's hard to explain -- I remember when I first applied to get him tested and I kept telling the doctors that he was just "different" and I couldn't explain it. I just knew they were all going to think I was crazy! Now I realize that it really is different! And yes, the special needs parents at my son's school are wonderful -- we are very blessed.

        My kids always have the problem with friends being at the "other" parent's house for the weekend we are doing their b-day parties and so only 2 or 3 kids can show up. It's sad. Hurts my heart when my kids BEG for certain friends to come play or come to their parties and they can't. I don't understand it just because they are at the other parent's home why they can't still go to a b-day party of their friend's.

    Thank you, Sheri, Janine, and others for sharing. A productive, inclusive discussion on an enlightening topic must always begin with tolerance, civility and diverse opinions.
    When I read some comments on the thread attacking Janine, I couldn't help but wonder why the bitter divisiveness? Why can't we all respect each other's experiences and input, even if someone else's pain or perspective is different from our own? Must we all think alike to make a valid point on this post?
    Janine, contrary to what A Mom says, your comment was not "ill timed". The beauty of the web and social media, is that this forum is open to all whether you are a parent of a special needs child or not. Janine has as much of a right to comment on this thread as A Mom or ANY child of God.
    Sheri's post definitely struck a nerve. I am the mom of three beautiful, healthy, non-special needs girls. The doctor told me blood work for my first 2 pregnancies showed a risk of Downs Syndrome sending me into depression and days when all I'd do was cry. My third baby was unplanned during financially uncertain times so I suffered from ante partum and post partum depression and often considered that death would be preferable to life. Though the grief most parents on this thread with special needs children is different from my ante/post partum depression, my grief was very real. I think it's helpful to acknowledge that: we all hurt in different ways, one parent's grief is not superior to another's, and we all need strength and grace from God to meet the daily challenges of being somebody's mama.
    I empathize with all parents.
    Just as I respect Sheri's post, I respect Janine's comment. @'A Mama', Janine did not feel "the need to go to the trouble to say something condescending and not-helpful". In fact, she merely offered insight into her family's personal experience. That experience provides a different lense for looking at the isolation and grief that parents of special needs kids might feel. Most comments on the thread were tending towards "families with non special needs kids are bad or insensitive if their 'normal' child turns down a play date or steps away from my special needs kid due to the fact that my special needs child (may) display(s) violent behavior". I believe that's why Janine chimed in with a thoughtful look at the 'whole picture'. Sure, special needs parents know why their kids are excluded. The other side of that coin reveals that unpredictable, violent displays by special needs kids in the presence of non special needs kids are no less frightening although the violence is involuntary. Sensitivity has nothing to do with a child feeling frightened by a child acting out due to a disability. That's an important distinction she makes and her comments make the grief of special needs kids NO LESS VALID. Attacking and being critical of parents with different experiences is hurtful, mean-spirited and unnecessary! The focus should be the children-- bringing them together and protecting them at all times, where possible.
    My niece has autism and displays violent behavior. While I educate my girls about her condition and encourage them to engage her during visits despite my niece's preference to be alone, my job as a parent is to protect my kids first when my niece displays involuntary violent behavior. I am not capable of managing my niece who is almost as big and strong as I am; her mom and siblings are familiar with her most and know how to help. I believe we are all doing the best we can to protect our kids. If one's child is near a child who is exhibiting violent behavior, it is not reasonable to expect that parents would tell or expect their kids to stay put when in a potentially harmful situation. There is nothing insensitive about this mindset.
    It's not fair or right to VICTIMIZE parents who raise their children to remove themselves from violent situations. Doing so is divisive and could unintentionally cause parents of regular children to opt to avoid events where aggressive displays may occur altogether so please keep this in mind when regular kids step away from an involuntarily overstimulated child who kicks, hits or bites. It seems parents at risk of being victimized or deemed insensitive for protecting their in a social setting from violent special needs kids are darned if we do (tell our kids to step away for safety's sake during a violent episode), darned if we don't (attend a function for a special needs kid known to display violent behavior). We all have stress in our lives and no one wants more. I'm not being condescending, here, just suggesting a perspective that involves all parents' concerns rather than automatically writing off anyone who rejects an invite from a special needs child as "insensitive, etc.".
    When Janine asks what the difference is between her daughter being turned down for a party/play date vs this other child, she is relating to special needs parents' plight by pointing out that isolation is isolation. My daughter wanted a play date at our house with a kid from her private, Christian school who lived 25 minutes away and I remember thinking it was because we lived on "the wrong side of town". Then I realized we'd have to go to their house if we wanted play dates or meet up near their place and set up play dates with class mates who live closer or didn't mind driving to us-- in other words, find alternatives. Our family was a lot happier with this approach.
    So back to dealing with the grief and find solutions... Aside from releasing on forums like this, a constructive start is to find a community of peers wherever that might be. Whether parents of special needs or non-special needs kids, we must all accept that community might not look like what we had hoped, understand the perspectives of other parents, and then be grateful for the community/family that we are able to create. We can't force people to be our friends, nor can we force kids to be our kids' friends. We can only invite them to our events and let God do the rest. May God bless us all!

      Thank you so much for your thoughtful reply. I agree that this is an ideal place to have open and honest discussions about issues that are not easily resolved. You are right that all of us face isolation and grief and that this is part of the human experience. My desire for this blog is never for it to be divisive but to be inclusive always!
      You bring up a very valid point about protecting children from violent behavior and I couldn't agree more! We struggled A LOT with aggression in my autistic son when he was younger, and as a result we had to remove him from many situations where it just wasn't safe. I don't think any special needs parents would actually condone violence or have the expectation that others need to just "put up with it" because of the disability. Our policy with our son is that "Asperger's is no excuse," and this is true. He is ALWAYS disciplined appropriately whenever aggression is displayed. Also, I want to point out that the parents are the ones who recognize aggressive behavior the most, as we are usually the ones taking the brunt of it. When my child was at his most aggressive, I was the one he took it out on most. We did everything we knew to do, including an intense psychiatric day treatment program as well as the introduction of anti-psychotic drugs, but none of these were easy steps to take. It is an extremely scary place to be when you have a child who displays violent behavior, and parents who deal with this are well aware of that. So, I don't think it is anyone's intention to victimize those who choose to protect their children from said violence -- we ALL want to protect our children, as we should.
      That being said, I DO think it is important to educate and inform people in our society (including our children) about disability, social differences, etc. and develop a more compassionate and loving stance toward those who are different than we are. In the instances where we need to keep our children away, it's important for them to know why -- to know why certain children act differently, or talk differently -- and above all, I think it is crucial to teach our children that compassion and kindness are never out of place.
      My original post was more of a plea for kindness and understanding than anything else. Because so many of us with children who have behavioral problems associated with disability face unfair judgment and stigmatization, I feel the need to let others know just how that feels. So many people don't realize that there is a disability behind the odd or yes, even aggressive, behaviors and their reaction is to simply judge the parents.
      I am the first to admit that I was guilty of this for a long time. I was a perfect mother before I had children, LOL! I taught school for nine years before having a baby, and I thought I had it all figured out -- that those kids who couldn't behave obviously just had bad parents. Well -- I was wrong. Dead wrong.
      Certainly, a lot of behaviors out there are due to nurture, but so many are also due to nature -- and they get so mixed up that it's often hard to know which is which. Even my three "typical" children have behaviors that I think are directly associated with their personality types, not just with my parenting mistakes (although they have plenty of those as well!)
      And I can't emphasize enough that one of the best ways to reach out to a CHILD with special needs is to love his parents -- which is the purpose of my post. The parents are more aware of the big picture than the child is, and that is why our pain can be so devastating. We need to know that people love us and can show kindness and compassion toward us as we struggle through life, just as much as anyone else -- even though our struggle may just look like bad parenting to some. That's why this kind of open dialogue is so important.
      Thank you, again, Mistee, for your comment, and I ALWAYS welcome civil and honest discussion! God bless you as well!

      Thank you so much for your respectful and well articulated comments. This is my first time reading this page and I was very moved by the post because I share many of the same feelings. I think the reason why we feel them so profoundly is because we are confronted by "the bigger picture" all the time and we feel that It's nearly always our child who gets the raw deal. We are torn between our understanding if the needs of others and our love for our child sometimes multiple times a day. Please forgive us if we get a little sensitive at times.
      I have been particularily touched by the people in my life who have looked at us and our struggles and unflinchingly acknowledged them much like you have but then had the courage to say, "How can we do this?" Who don't just leave it to God but ask what they can do.
      My own parents came to me and said, "We love A-- and want to include him and don't want him to feel left out but we aren't comfortable handling him sometimes....What can we do for him?" How can me make this work?"
      A church volunteer came to me and said, "Tell me about your son. We understand he has some unique needs. What do you need from us?"
      As a special needs parent I wish more people would look me in the eye and acknowledge the difficulty I already know too well but also have an open mind and a willingness to work on a mutually satisfying relationship. All we want sometimes is a chance, a possibility, a little hope.We are some of the last people who would want anyone uncomfortable. I don't know if its misplaced politeness or what but what we usually get people avoiding us which can be very hurtful and lonely.

        Lori, yes, yes, yes! We as special needs parents are more aware of the problems and difficulty than anyone, because we do deal with it daily. . . but we just want to be acknowledged and for people to show they care. This statement "I don't know if its misplaced politeness or what but what we usually get people avoiding us which can be very hurtful and lonely" hits the nail on the head. Thank you for posting.

    I really feel you about the guilt. It's so hard for me to not feel like I did something, should have known sooner...something. It really is so important for us to see the magic in our children...

    Beautifully written and I think it speaks to many, many people.
    My daughter is 15 now and was diagnosed with Autism at 2 1/2. We had an inkling (thanks to much research) prior to that, but it was still a grieving process; mourning the loss of a child we thought we had.
    I remember distinctly (as if if were yesterday-it remains that clear in my mind owing to my mixed emotions of guilt and pride) when she was about 3 and I had my then 2-year old sleeping in my arms. I was walking with my daughter into a store that had only a few customers. My Autistic daughter said something that sounded a lot like, "I see you, Mom." I am CERTAIN this is not what she said, but it was close enough to pass for this. I immediately said, "I see you too, Allie!" and proceeded to desperately seek out any other adult who noticed that MY kid did something normal. MY kid. No one saw it and I was disappointed and riddled with guilt that I wanted this.
    Moments like this come less frequently now as we have long since moved into the acceptance stage. But your message eloquently captures the isolation, guilt, shame, fear and exhaustion that millions of Special Needs parents experience.
    Thank you for sharing your story; sometimes the road is paved with many potholes (so many more and unique ones that the parents of "typical" kids have) and it does provide a certain sense of comfort to know that we are not alone.
    Keep on keeping on!

      Yes, Cindy -- "mourning the loss of the child we thought we had" -- that's it exactly. It is so encouraging to be reminded that grief is a process and that as we move into that acceptance stage, things will be a little less bumpy. I LOVE the story of your daughter telling you she saw you. How beautiful and what a sweet, precious memory for you to hold onto. Thank you for your encouragement and for reading!

    Thank you. This is exactly how it is and what we have run into. Our son has autism. My husband has autism. My son has HFA and my husband is an Aspie. It's so hard for him to work even, because people sometimes treat him so badly. And it makes it worse to look at our son, and know he may face that as an adult. Or to have people pull their kids away and order us to go away because of ignorance. The things people say...
    Thank you so very much. I wouldn't trade either of them for anything. They are more real than many of the people I see every day.

      Thank you, Crystal! I agree that there is something so refreshing about HFA/Asperger's and this is one of my favorite things about my son--that he is who he is and doesn't pretend to be anyone else! I think the hardest thing about high-functioning people on the spectrum is that they look "normal" and so their behaviors are judged even more because the disability is invisible. Please know you are not alone!

    I have a daughter with special needs and honestly and sadly the unique grief you express is with myself and my wife as well. She can't walk because she had a brain bleed at birth which in turn caused high muscle tone in her legs. I know its no where near as bad as some are and we're thankful for that but because of her condition I'm starting to notice other characteristics as well. She has crazy fits where she just doesn't calm down no matter what. If this happens in public we get some pretty crazy stares. She has a twin brother and they will be 4 years old in January 2014. She also seems to act much younger than her brother and other kids her age. Shes very smart but at times I wonder because she acts as she's still a baby. I've read and our doctor has told us its common in special needs kids. I'm just worried that in school she will be the one left out, not invited to parties, and get left behind. Its definitely a different kind of grief.

      Keith, my heart goes out to you and your wife! Hopefully it will encourage you some to know that my son with Asperger's is also a twin. My husband and I credit many of the positive behaviors that he has learned to the fact that he does have a twin sister, a "typical" example to follow who has been by his side since birth. We believe this is just one of the reasons God chose to bless us with twins. Prayers and love to you in your special needs journey!

    From one mom of a special needs child to another, thank you. It's comforting to know I'm not alone.

    My two daughters with multiple disabilities are in their mid-20's now, but the pain doesn't go away. It changes -- it comes in waves -- but it never ends. I have so much I want to say to you, but for now I just want you to know that YOU ARE NOT ALONE. And please know that you are doing an amazing job, and that you are an AWESOME mom. Please try to find some time to take care of you -- as impossible as that sounds. I used to make jokes about how it would never happen, and then I found myself very ill and in the hospital, and I had no choice. Taking care of YOU is one of the best things that you can do for your child. Keep writing. You have much to offer other parents that are on similar paths. Be gentle with yourself... Keep reaching out. And don't ever believe that you are alone.

      Thank you so much, Jo! I think you hit the nail on the head with the idea of pain coming in waves. I've already experienced that just in the five years we've been on this journey. Thanks, too, for the reminder that I (and all of us special needs moms) need to take care of ourselves. I couldn't agree more. I've struggled with debilitating anxiety for several years now because I wasn't being gentle with myself. . . it's still a daily struggle. So thank you from the bottom of my heart.

    Thank you for sharing. My son has CP and is 13 and I have had a few of those bawling my eyes out the older he gets.. I understand the grieving everyday for the loss of the life I so desperately would want for him.

    Sheri, I really appreciate the honesty of this post. Loss and grief go hand-in-hand and especially when you feel a loss for someone you care about so deeply the grief is unavoidable. I came here from your comment on Emily Wierenga's blog, and am wondering if you have written posts specifically on your experience with the church community? If so, could you point me to one? I really do appreciate your honesty and am always looking to grow my understanding of what families with children with special needs experience as part of church community. Thanks!

    While it is usually not a kid with a disability's fault he is excluded from fun, family or outside-of-school activities, there is the odd time when said kid's (likely involuntary) actions are a contributing factor. K is a little boy with autism and Tourette's who has been my daughter's classmate since kindergarten and without a doubt tries very, very hard to play with the kids in his class... but has also spent years and years yelling "vileword, swearword, J is so fat!!" at my kid (an average of 19 times per day, it's an involuntary vocal tic, I am told; his para thoughtfully keeps track) and any number of her classmates for years. YEARS. My kid copes displays more grace towards K than I'd be capable of but flat-out refuses to spend a single second outside of school with him and I cannot blame her. We live in a very small town, there is exactly ONE school and ONE third-grade class. K doesn't get many birthday party invites (which is very, very sad, but, well, 5 days a week of insulting my kid is all my kid can take).
    I require my child to be polite to K, as civility is pretty much what keeps the world from descending into anarchy but I cannot make her like him. (One of the more heartbreaking calls I ever received was several years back from K's mom, inquiring why J was nice to him at school but declined all playdates). At work, I would not put up with anybody treating me the way K treats my girl... but my kid has no choice but to suck it up.
    While this will not be a popular opinion, it is worth looking at whether those who are excluding the kid that you clearly love and adore for a valid or at least somewhat understandable reason.

      Thank you for sharing your perspective. It is a difficult situation, obviously, when the behaviors caused by disability are extremely disruptive. It sounds to me like there is a big communication gap between teachers, parents and students that is causing more pain than is necessary. If the child's actions truly are involuntary (as they are with Tourrette's) then the other children really need to be taught that these are symptoms of a disability. It is good that you teach your child to be polite to the other child, but in my opinion, children need to be taught compassion and sensitivity even more. Seems like the school system is missing out on that opportunity as well as on the opportunity for redirecting undesirable behavior. Not sure what the school district is like in your area, but it sounds like sending her autistic/Tourrette's son to the ONE school is the only choice this mother has. And by federal law, the public school system may not exclude a child due to disability.
      While I do think your opinion is valid, and I understand that you are coming at it from a protective stance for your daughter's sake, I would urge you to consider that this is exactly how special needs parents are approaching life every day. Our kids are constantly under attack, as are we as their parents, by judgmental stares, comments, exclusion, and just plain meanness.
      As I read your post, my heart was breaking for the mom of this special needs child. I cannot imagine the tremendous courage it took for her to call you and ask why you declined her invitations. I am very curious as to how you responded.
      You are right that you cannot make your daughter like this child, but you as an adult have the ability and tremendous opportunity to show compassion and love and kindness to the mother of this child. That would be such a huge step. You say that your daughter displays more grace toward the child than you would be capable of -- which shows she has a tender, teachable heart. I cannot understand why that would not be the priority here--to nurture that innate compassion instead of squelching it.
      I have four children and only one has special needs. We have tried our best to raise our children to be polite, yes, but we have emphasized kindness and compassion EVEN toward people they don't necessarily like. Yes, I have even made my children invite certain "undesirable" kids to their birthday parties. As a result, I see my three non-special needs children reaching out to and even befriending the "weird" kids in their schools, and I know it's because of the compassion they've learned in dealing with their own brother, and experiencing the heartache that comes with having a loved one repeatedly rejected. I think you are missing out on that opportunity with your daughter, and that is very unfortunate. You say that you would not allow anyone at work to treat you the way this child treats your daughter, and I agree -- but you would be dealing with another adult at work. This is a young child of 8 or 9 years old, who has a disability DEFINED by involuntary actions which are clearly causing him to be shunned not only by the children, but by the grownups as well. Very sad.
      see more

        Thank you for your thoughtful reply.
        When K's mom called me, I gave her an honest answer -- that my daughter did not like being constantly, albeit involuntarily, called names by her son and for that reason did not want to spend time with him outside of school. She was seven at the time and entitled to politely decline a playdate.
        My daughter hates being insulted and called fat. Absolutely hates it but is now used to it. *Sigh* It's been 4+ years and is likely to continue until they start high school. She is required to be (and is) polite to him. She's nine and doing her very, very best. What more can I ask?
        K's mom gives a presentation on her son's special needs at the beginning of each school year (and returns at the request of the teacher, guidance counselor or para). The school has an anti-bullying policy that seems to be enforced (and the teacher explains why K's special needs seemingly exempt him from part of it), extends to birthday parties and that I've always abided by, i.e. invite all the kids, all the boys OR all the girls, or no more than 3 kids in a class of 22ish. K's mom, K and the school are doing their very, very best too.
        I do my best to teach my daughter (and son) kindness and to demonstrate kindness and compassion. My kids are very comfortable around folks with disabilities, including their dad (my husband is sees a tiny bit but is classified as legally blind), have friends who come over for playdates who have disabilities and are generally pretty accepting. I too am doing my best.
        And I do see your point about the importance of reaching out to another kid, because it's the right thing to do. I might just invite K the next time I have a bigger gathering for the kiddos at home.
        (The dilemma I come up against is that J and my son too, on occasion, has declined a playdate with a non-disabled kid that she said she didn't like, e.g. Bob only wants to play Ewoks and she's over them. Occasionally a non-disabled kid declines a playdate with one of my kids and, well, that's fine. I have no issue with the fact that J does not want to play with Bob, or that Suzy doesn't like my son and declines playdates with him on that basis. And if it's okay to turn down an invite from a kid you don't like, why wouldn't it be okay to decline a playdate from a kid you don't like who happens to have a disability?).
        @Leslie schmidt - I absolutely do not let my daughter be mean to ANY kid; she's required to be (and ABSOLUTELY is) polite to him. Being civil to a not-favorite classmate isn't quite the same thing as treating said classmate poorly.
        @ A Mom: The other kid's mom asked why my kid declined a playdate and I told her the truth, as politely as I could. The alternative was lying ("J's busy every single time you suggest and will not be available until the 12th of never"). If the situation were reversed, I'd hope the other mom told me the truth. I don't quite get how (or why) this means I have no social skills.
        see more

          Janine-You've missed my point. I am taking about Sheri. She wrote this gut-wrenching post and poured her heart out and yet you felt the need to go to the trouble to say something condescending and not-helpful. I can't get through this post without crying.
          Trust me, we get it. Kids don't want to play with our children because they are quirky or delayed or inappropriate behaviors. In fact, parents like us probably have a binder full of goals and objectives and behavior plans, spent thousands on therapies, researched hours upon hours and probably cry at night about these very behaviors. No, this isn't some earth shattering news you shared. Maybe you felt you were enlightening everyone. Or maybe you were seeking more information. I am not sure. But it seems ill-timed. Sometimes we parents just want to seek solace with one another. Sometimes we just want a little understanding. Instead of acknowledging, you just put more salt in a wound on a post where a mom beautifully articulated her anguish. Yes, there is a time for dialogue and education, but this wasn't the forum, IMO. This is why you received the reaction you did. Sometimes educating others and taking about this is exhausting and frustrating. Kinda like hitting your head on a brick wall.
          I commend you for raising a polite and thoughtful child. But for those of us with imperfect children, it is reassuring to know there are others like us who HURT and know there are people who acknowledge these feelings and grief.
          My guess is his parents hurt a lot too. It's your prerogative to decline the invites. This mom sounds phenomenal and is trying her best to help her kid. My guess she is probably very isolated and alone.
          Sometimes we just have to go through life with the adage "Don't be an a**hat". (Sorry if this offends, Sheri).
          Perhaps my responses to you come off crass. I should apologize but I would be remiss if I didn't share my perspective as a special needs mom of two beautiful, smart, and caring little girls.
          Have a Merry Christmas.
          PS-it's a REAL DISABILITY. It's not bullying, although it seems like you don't fully believe that it is.....
          Autism rates are now 1 in 50 kids. Be thankful it's not your child. With these rates, it's only time before it affects your family whether it be a niece, nephew, dear friend... We will be only seeing more and more kids with this disability in the classrooms so I think it's good that children are understanding differences at an early age. This isn't the days of Title 1 where the kids are sequestered to a special Ed room and not seen or heard. This is the age of inclusion. Plus many of these kids likely have an IQ higher than most of us adults. Many are geniuses. It's just that others judge them based on behaviors, language know, "differences". ;)
          see more

      Wow. Lucky for you it's not the other way around. Pretty harsh. Nothing like beating a person while they are down and pouring their heart out. Trust me, as parents we are very much aware how our child(ren)'s behaviours affect their social life. Nothing new. But thanks for calling attention to it. *sarcasm* Perhaps you could use some social skills training yourself?

      Can you imagine what it would be like to say what you don't want to say? What if every time you saw this boy with Tourette's your mind made you say, "Get out of here, ret*&d! I'd like to knife you!" or something absolutely horrific? That's what Tourette's is like. My mom has it. I grew up with it. It made me more empathetic and kind. He CAN'T help it. It's not his fault. Please watch this entire video. You really, really, really need to watch this and learn.

No comments: