guilt -> gratitude -> responsibility

Ed note: I put the following up on Diary’s Facebook page on Saturday. I feel the need to repost it here for a couple of reasons. Firstly, not everyone who reads Diary is on (or follows it on) Facebook and I really wanted everyone to see it. But more importantly, I wanted it to be a part of Diary. I wanted it to stand as evidence of my own evolution and so too, to serve as proof of this community’s unqualified support for one another and our children. I am honored and grateful to be a part of this incredible group of people.

***

guilt

by Diary of a Mom on Saturday, April 9, 2011 at 8:04am

 

Last night, a reader left the following comment on the COMMUNITY BRAG PAGE

My 7yr old son had a great Wednesday at school. He did so well he was rewarded with taking home the class mascot Peter Rabbit. He was beaming when he walked out to the car w/his prize for the night. Needless to say a day where he likes school is worth its weight in gold here. We celebrated with ice cream & took pics for him to remember the day with. At night we read The Tale of Peter Rabbit & made Peter a bed next to his pillow. When Mason took him back to school he was sad but had no meltdowns, tears or tantrums. It’s only one day, but I will take what I can get & celebrate!

Followed by the following disclaimer ..

(Jess, I feel bad that this doesn’t sound like a lot, because my 7-year-old is mildly autistic & fully functioning. School is hard for him w/all his sensory issues and I am so very proud to have a good day that I wanted to share. As crazy as it sounds, sometimes I feel guilty that his autism is not as severe as most here. I will totally understand if this isn’t posted, but I wanted to say that mild or severe I will take any bit of good that comes his way. Thanks for your blog, it’s great.)

I post this here because I wanted to share my response. I completely understand this commenter’s feelings of guilt around having a child who is relatively lightly touched by autism. I’ve written about it. I used to live in it.

Over the years, I’ve (mostly) managed to move away from it, using it as a stepping stone toward gratitude and what I now see as a sense of responsibility. Here’s what I wrote …

Please know this – the thing that I love most about this little slice of the world here on Diary is that it is a sacred space. It is a place where our children’s level of impact will never be a competitive sport. A place where we all understand that challenges and progress are relative within the context of the individual – and where we know nothing if not that our kids are individuals.

I used to apologize constantly for the fact that my Brooke is not as involved as other kids. A lot of my early posts contained ‘disclaimers’. I felt the constant need to say that I knew that we swam in the shallow end of the autism pool and that I had no right to ‘complain’ (a euphemism for writing about the stuff that hurt.) Ed note: don’t believe me? CLICK HERE

Eventually, the apologies grew tired.

I finally had to accept that our story is our story. Our daughter is relatively lightly touched by autism (for which I thank God each and every day), but it is nonetheless the filter through which she processes her world. Within that context, there is joy and there is pain – and while her challenges are not as severe as others, they are no less real than anyone else’s, nor is the progress that she makes any less profound for her or for us.

Autism is a spectrum disorder. By definition, it is an enormous umbrella over a vast spectrum of human difference. An imperfect label at best for such disparate conditions, but it’s what we’ve got. For better and worse it inexorably ties us together.

But the differences remain. Which is why I constantly implore every member of the community to tell his or her OWN story. Why I say again and again that no single voice can ever truly represent the whole.

So bottom line, we have to remain sensitive to each other, we have to remember that ours is not the only story, and that no matter how different our children’s manifestations of autism may be, we are walking this road together. As such, I believe we have a responsibility to each other – to fight not just for our own children, but for ALL of our children. And that, to my mind, includes not just removing the barriers, but also celebrating the progress for each and every one of our kids.

Please don’t ever be afraid to celebrate your child’s successes. They matter.

And a good day at school? Priceless on any front.

Thank you for sharing.

Jess


26 thoughts on “guilt -> gratitude -> responsibility

  1. Absolutely.
    Well said Jess.

    I love the Peter Rabbit day, gave me a huge smile as we can all relate to days worth their weight in gold 🙂
    I hope your son has many more.

  2. MY Jimmy is average on the spectrum. I almost threw a party when he started standing to pee! We take our victories and joys when they come. Right now I am going to enjoy MY victory in surviving Spring Break. My kids are all gone!

    Do you hear that?

    Me neither. 😛

  3. How beautifully explained. If only everyone could understand to except others on a case by case/person by person basis. Thank you for all the time you spend on your blog. It is so educational and inspirational to me.

  4. We swim in the deep end of the pool but I don’t want anyone to join us. While I do wish no child had autism, it’s a fact that autism does exist. For those who are even lightly touched, I do realize it is still a struggle maybe not as rough as some but a struggle nonetheless.

    Never when I imagined motherhood, did I think ooo YAY IEP, sensory issues, fighting the school district and no one else did either. It doesn’t matter which end of the pool you’re in as you’re still in the pool.

    Dory from Finding Nemo is in my head most days, “Just keep swimming. Just keep swimming.”

    Love you,

    Jersey

  5. Yes!

    Being an aunt to a beautiful little boy, and seeing him disappear in front of my sister’s eyes as a toddler was overwhelming. I watched my sister and her family work so hard and bring him out of the darkness and now he’s doing so well. I was grateful to have my sister’s guidance when RM was dx’d, but often had those guilty feelings when my daughter was not struggling to the same degree and is progressing faster than her son. But I decided to have an honest chat with her about it, because I did feel that if there ever should be a sacred place to share – our bond through autism was it. I quickly understood it was silly to ‘compare’ our journeys with autism, but rather we could hold hands and walk the road together.

    Thanks, Jess. xo

  6. First of all.. I follow this site more closely than any other on the internet. It makes me feel like someone actually understands and can verbalize my feelings in a way that I never could – so THANK YOU Jess. I have never left a comment before but was so moved by this story,, more the “apology” after the comment than the comment itself. I also relate completely with this. My daughter is 9, and I am emerged in the advocacy of autism awareness. I find that generally the average population doesn’t really know the differences with ASD so I just tell people my daughter has autism. I am ALWAYS internally feeling guilty for so many reasons. The main reasons are that a)she really has PDD so it isn’t classic autism and b) I sometimes feel like I am using my daughter in an effort to raise awareness for autism but maybe if I didn’t constantly tell people of our struggles they may view her thru a different lens.

    Face it – people are so judgemental and I don’t want to give people MORE reasons to find differences between by daughter and everyone else. We have had our diagnosis for 6 years now and I am still and feel I will always be struggling and feeling incredibly guilty no matter what I do. If I don’t raise awareness = disservice to my community. If I do = disservice to my family???

    On a lighter note – (sorry to rant) – I am always thrilled with our own “small” victories and I am so glad that others see these “small” things as wonderful achievements too. Congrats to you and relish these moments, it often helps to remember them during harder times.

    With love and kindness to you and yours –

  7. Beautifully written, Jess. My four year old son is severely autistic and I religiously read your community brag page. I revel in each and every success, regardless of the degree of autism. We are all in this together and must support each other, for who else can better understand our trials and tribulations? I am elated for Mason and his family. I wish them many more easy, fun and happy school days.

  8. Struggle is struggle. Heartbreak is heartbreak. And victory is victory. We’re all here for a reason. A common reason: we’re all touched by autism. We share, we laugh, we cry, we celebrate. We advocate. That is the beauty of this sacred, safe space…there is no judgment, only open hearts and minds and listening ears.

  9. Hello Jess,
    Thought that you might enjoy this link to a news story about a boy who has been elected prom king at his high school in Celebration, FL. The boy has autism and his mom talks about how it has been such a special moment for their family.
    http://news.yahoo.com/video/us-15749625/24855341
    Think that it is nice to celebrate happy times just like the Peter Rabbit moment you mentioned in your post.
    Have a nice week!
    Colleen

  10. Love this post. And the different degrees of ASD bring different challenges – I worry for HF kids like O who will be so close to their peers one day…and yet so far away.

    I heart the Peter Rabbit story, and the standing up to pee story, and Jersey’s amazing – and true – statement: It doesn’t matter what end of the pool you’re in, you’re still in the pool.

  11. Thank you so much for this. I really needed it. I feel guilty for complaining because my son is so high functioning (Asperger’s), yet feel that in some ways that’s even more difficult, because there is no visible reason for a boy his age to act the way he does sometimes…. it IS a spectrum, and we ARE all in this together, and can be supportive of each other no matter how deep in the pool we are at a given moment. Thank you.

  12. I love this. I think a lot about how all those on the spectrum are so different from each other and yet all have a common root. I love that you have a space for everyone to share wonderful things.

    I firmly believe that there can be no hierarchy of problems. Just because someone has worse problems doesn’t make yours any less valid. And just because someone else’s triumphs seem bigger, well that doesn’t mean yours are any less huge.

  13. Kudos to Mason. A good day at school is indeed worth celebrating. There sure are all kinds of yardsticks by which we measure success. My son is non-verbal (except for the word NO) but he doesn’t seem to be affected by any sensory issues so while I am saddened and frustrated by his lack of talking I feel supremely grateful that he can go to the park and out to dinner and to the movies etc with us. He loves all those things and he lets me hug him antime I want. Win!!! We are all in this together. Different, but together.

  14. I recently had my son’s (11, diagnosed Nov. 2010)first IEP meeting post-diagnosis of PDD-NOS, this of course was the district’s testing results and establishing what my son was entitled to under their special education rules. Before this he had been on an IEP for ADHD, now it is more extensive. However, we did find out that he doesn’t display as many of the ASD symptoms at school as he does at home. I believe that this is because it is a much more structured environment, there is no room for the emotional meltdowns as he has at home. However, for a brief moment the thought popped into my mind that…”Hey the doctors must be wrong, my baby doesn’t really have autism, just the ADHD!” But then the realization of the fact that he still has so many social issues, sensory issues, the maturity of a 5 year old and all the other things that I haven’t identified yet, and it hit me again that “Yes he does you have to accept it.”

    Severe or mild, our children are all facing this in a world filled with people that are ignorant of what autism is and what it truly means. I am still myself in the post-diagnosis acceptance stage and feel grief, guilt, and all the other overwhelming emotions that hit me like a brick wall. If it weren’t for your blog and others like it I don’t know where I would be. Thank you Jess, you let us all know that we aren’t alone in everything we feel and experience.

  15. Repeat of my FB reply: My 15 yo son is Aspy. My 8 yo daughter is mild/moderate. There is constant stress with both. But, when my son has a bad day, it is usually a doozy & others are less understanding because he IS higher functioning. Each point on the spectrum has its own unique set of challenges, none of them easy. As moms, we all have our guilt burdens, but where on the spectrum our child lies should not be one of them.

  16. comments from Facebook:

    AKB love. thank you.

    SPS thanks for that. a lot of us needed to see it!

    KML SO TRUE – something we ALL need to be reminded of!

    TP thanks for sharing!!

    MM You have such a gift for saying the right things!! Awesome!

    THS Thank you, I sometimes feel the guilt .

    SRR I still qualify/quantify, to this day. Thanks for the reminder:)

    CMG I am always surprised when I hear a parent apologize for their children’s place on the spectrum. For me, there is no need for apology. All loving parents work diligently to find success for their children and I love hearing accomplishments from NTs, “higher” functioning, classic ASD and add/adhd and Downs & MS, & diabetes, & cancer…. love for your child’s accomplishments is a universal language that fills my heart with hope. *hug*

    SCC Thanks Jess – I needed that today xo

    MHK Agreed. Amen, and amen.

    DVH Love this – thank you!

    JW Thanks for sharing Peter rabbit… Congrats to both you and your son for having such an awesome Wednesday. What a great thing to share.
    Jess thank you for doing what you do best, making someone feel welcome in “The Club”

    CG Thank you

    EL I just want to say thank you for this. My daughter is delayed (only 23 months old right now) and we are in the processes of trying to determine where the delay is and what is the actual “issue”. I don’t know if we will fall in the ASD umbrella or not but you have brought me so much comfort in this time in knowing that no matter what the issue may be I can find support and comfort in others so easily in this network of parents. Thank you for that. You really truly have an amazing gift and I am so glad you are using it for the right purpose.

    JU It’s so challenging and simultaneously so wonderful for ALL of us. Different does not equal harder or easier. It’s simply different. This needs to be said again and again. Thanks for reminding us.

    BM My son is on the low end of severe on the spectrum. Challenges, are challenges no matter where your loved one is on the Spectrum. Being thrilled about your child’s success is nothing to every feel guilty about.

    PPH Spot on, as usual. Thank you!

    EC-Z We all need to hear that and you articulate it so beautifully, as always. Thank You!

    AW-M This is a very interesting post, Jess. My son is two and a half and I often wonder how severe or not his autism will be as he gets older and how I will handle it. I feel the need to metally compare him every time I meet another asd kid. On the one hand I feel better if his asd is less severe seeming, on the other hand I feel as if I don’t “have room to talk” if he is less severe. I had no clue others thought about this same thing! I love your posts Jess, you have a way of putting my thoughts and feelings into words. It is so comforting to know I am not alone. Thank you!

    AKS I can see this issue from two very different sides of the spectrum. I have 12 yr. old triplets (2 boys and a girl) and both my boys have autism, one with Aspergers/High functioning autism and one with very severe autism, while my daughter is not on the spectrum. There are times when my son w/Aspergers comes home from school sobbing and miserable after a difficult day and my son with severe autism (he is totally nonverbal) has had a happy, fun day, so I would never say that one type of autism is “easier” than another. From minute to minute, it is impossible to predict the highs and lows, no matter where you are on the spectrum. We all just have to keep on keepin’ on, and be grateful for the good times when they happen, and try to learn from the hard times. Thank you for your wonderful blog, Jess! 🙂

    KKA I was just talking about this yesterday with a dear autism mommy friend, you say it so much better than I did, but the sentiment is the same. Love this.

    LB ♥ You so totally rock & I love your posts! 🙂

    TE thank you, for I too have apologized. I have learned that the spectrum is in different ranges for our kiddos. My journey is different with my son, but we all share the same journey. No matter what it is sensory, social, anxiety, sleep the list goes on. We are here to support and encourage eachother. To help our kiddos be the best they can be.

    KMY In order for this Community to be able to work for all our kids, we need to stop apologizing for who we and our children are and we need to stop judging ourselves, our children and others. This is an autism community not a severely autistic community only or an aspergers community only. When we all learn to band together with that kind of united front, we can and will make some serious changes. I understand, I have apologized and judged myself but I’ve come to realized that a journey is always different for everyone no matter what kind of journey it is. So happy trails my friends and as usual, wonderful job of beautifully expressing the sentiment Jess!

    Footprints in Time Thank you for this! I used to struggle with this every time I called my uncle for help. You see, my cousin is on the severe end of the spectrum, He was my first encounter with Autism. Then the doctor told me “Your son has Autism, and my whole world changed. But my son is more high functioning than my cousin, so every time I would call my uncle for support, I would start off with an apology till one day he told me to stop apologizing, that He was there to help me through this and I realized that I love my cousin and my son both, and there is no need to compare them, in fact THEY taught me that!. we live 20+ hours apart so they only see each other MAYBE once a year, yet the two of them are INSEPERABLE. They pick up where they left off as though they has just seen each other yesterday…its amazinG!

    ACV After my second son was diagnosed this week I can’t tell you the number of people that said to me “yes, but at least he is higher functioning than his brother” I know they meant well, trying to keep me from flying off the rails but people who don’t walk in our shoes don’t always get that “little moments” are HUGE! Celebrate every one – I know I do!!!

    A Chameleon in the Spectrum It’s all relative IMHO. No competition. No apologies. Everyone is different. “Fair” is everyone getting what THEY need. We should celebrate ALL of our childrens’ successes!

    JBA I can only say that I read this blog because of the phenomenal way in which Jess explains so many of my feelings! And then I read all the positive and supportive posts and know that we all deal with this journey as best we can.

    DHF My 15 yo son is Aspy. My 8 yo daughter is mild/moderate. There is constant stress with both. But, when my son has a bad day, it is usually a doozy & others are less understanding because he IS higher functioning. Each point on the spectrum has its own unique set of challenges, none of them easy. As moms, we all have our guilt burdens, but where on the spectrum our child lies should not be one of them.

    MCM is high functioning too, got released from her IEP this fall, but I still find so many things I can relate too here. We still have issues, mostly social and sensory, but because she is high functioning, I feel many people think she is just “naughty” when these issues manifest. I love that everyone here understands, I feel a kinship and this is where I get reassurance. Thanks Jess, and everyone else who shares!

    TB Thank you so much for this!

    TH Jess, thank you for this, for giving me a place where I no longer have to feel burdened or guilty. It is strange to have someplace where you receive full support no matter how minor the accomplishment, but it shows how big the hearts of our autism family are. Mason, PeterRabbit & I are sincerely grateful for each one here & I promise to remember that this is a safe place for us to celebrate. So again, thank you, to all.

    ACF I am just so thankful to have found this blog and the community of support that has been created. I have felt so alone for a long time. I have been truly blessed by all the people in this community with their comments and with Jess and her gift for putting her life (i.e. pieces of all of our lives) into eloquent and beautifully written words. No matter where you are on the spectrum feel the support and cherish it.

    BGA A dear friend once told me “Disability is not a competition.” Whie my son is more deeply affected by his autism and other diabilities, it always warms my heart to read about another child’s successes…regardless of the degree of impairment or neurotypicality. Parental pride is a funny thing; it’s a great equalizer. Please continue to share your stories!

    Confessions Of An Aspergers Mom Amen! When I find myself whining about my situation I look at others and say, “What am I complaining about?” But then again, my journey is different, but it’s still very difficult. We all have to share our stories because there is always someone who can learn from your journey.

    SSB I am so in love with this entire dialogue! Beautifully written hermana

    TGD Nicely said (as always) Jess!

    MH Thank you so much, that was beautiful…we ALL needed to hear it.. guilt is bad enough for any mom, but for all of us, guilt runs rampant. On a happy note, I wanted to share something with all of you. The other day we got a pool that a friend gave us. When my daughter got home from school and saw it, she ran into the house and said “Mommy I am so excited! Come see!” For her to start expressing her emotions is huge, we have worked on this for such a long time. She still struggles to say it the right way, but on that day, and in that moment, she did it perfect, and made me smile 🙂

    Life in the House That Asperger Built Beautiful. Thank you for writing that. Just wonderful.

    LM Walking the line between convincing some people he is autistic and apologizing to others for him being autistic can get confusing for me. This post and all the comments is my way of centering myself. Refocusing. Re-energizing. Thank ALL of you for contributing. Ur my therapy! 🙂

  17. i am a grandfather of a 3 1/2 yr old beautiful granddaughter on the spectrum. she is doing quite well and is in school. you are right every time she takes a new positive step it is like a gift.we talk on the phone almost every day they live in out of town.she has a twin brother and he is fine they get along beautifly.she is a joy and the bright light in my life. thank you for providing such wonderful infomation.

  18. No father could have a daughter better than you. Even when dealing with your own pain and discomfort, you have the ability to reach out and help others. I am so proud to hear you say, “hi dad”, everytime we speak. You are so very special.
    Thank you for giving me, you.
    Dad

  19. Hi Jess – it’s been awhile… Just wanted to say that I’ve always wondered if the blessing of a lighter dose of autism for Brooke meant conversely that the autism community had a louder and more energized voice to bring awareness to autism in the form of you. I don’t honestly know how you swing it all in the first place, but if Brooke were more touched by autism, I wonder if you’d have the time or energy to devote to your blog and all the other important work you’ve done in your town and beyond for the autism community. I would never be so blase to call it a silver lining, but I think if anyone could make a difference it would certainly be and has been you. I’m glad you’ve moved on beyond the apology stage. Without you, there are scores, if not hundreds of people (or more) who would have no clue about autism, including me. You have far reaching tentacles and a voice that carries far. No need to apologize for the reason that makes that happen – ever.
    xoxo
    M

  20. I loved this post, we swim in the shallow end of the spectrum but I am realizing that no matter where you swim we are all in the pool together. Thank you for sharing and talking about it.

  21. Wow, I thought I was the only one who felt this way: slightly guilty because my son’s autism is less severe than some other kids’. Seeing this post makes me realize how crazy this guilt thing is. But it also made me feel much less alone. Thank you!

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