the bag

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I called home from work yesterday, checking in on the girls. Neither has had an easy time as the school year has wound down.

Brooke has been orbiting the heart of capital A autism land – regressing dramatically at home as the seasons change and the demands of unstructured, end-of-year days take their toll on her.

Katie has been struggling too. Stressed by her sister’s very presence these days, her fuse has shortened at home. More and more time is spent in her room, escaping into her world of books. On top of everything else, she’s been grappling with some serious disappointment. A friendship she valued has fizzled pretty spectacularly in recent days – a victim to the fickle whim of fourth grade girls.

So I was calling to see if everyone was OK.

While Brooke was willing to pick up the phone only to play out a favorite script, her sister was eager to talk about the day. One story stood out above the others.

There is a pre-verbal fifth grader in the girls’ school who Katie has talked about over the years. She’d come home with a story here or there about seeing him out on the playground or exchanging (prompted) greetings in the hallway.

One day she came home nearly jumping out of her skin with excitement. “Mama,” she’d said breathlessly, “Guess what? J said, ‘Hi’ to me to today! It was UNPROMPTED, Mama! No one helped him AT ALL! I mean, his aide was there, but she had NOTHING to do with it! It was so amazing! He totally SAID, ‘Hi!'”

I wasn’t sure if she was more proud at his accomplishment, or amazed that she was the one upon which he had bestowed the honor.

Yesterday, she told me, J’s aide had come to her classroom and called her out of class and into the hall. Once there, she found J standing with his mother. She handed Katie a small brown bag, in which she would later find a pencil decorated with smiley faces, an eraser and a party-favor style game of tic-tac-toe.

She was ecstatic.

“Mama,” she said, “it was the nicest thing EVER. J’s mom gave me the bag and said, ‘We just wanted to thank you for being such a good friend to J.”

“Oh, honey,” I said. “That’s incredible.”

My voice cracked. It took everything I had to hold back tears.

I am so proud of my girl. My girl who gets it. Who understands and celebrates the value in every human being she meets.

But so too, I was simply overwhelmed with empathy for J’s mom.

Never more than this time of year – this time when one child’s report card comes home in a special envelope – every single page bearing the words, “Progress Reports are required to be sent to parents as least as often as parents are informed of their nondisabled children’s progress.” 

This time when IEPs are fine-tuned and our babies’ challenges sit at the fore of our minds.

This time when comparisons are inevitable, assessments are necessary and gaping holes in development are more stark than ever.

This time when kids like mine are sliding down regression’s slippery slope thanks to longer days and routines that evaporate into the wind.

This time when their differences are just so painfully obvious.

As proud as I was of my girl, I just couldn’t get past the image of J’s mom, holding that bag. Handing my girl a trove of small treasures imbued with gratitude – for a little girl who had simply played with her son.

I pictured all of us. You, me, anyone and everyone who loves a child who struggles to connect.

We’re ALL holding that bag.

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39 thoughts on “the bag

  1. Well said….wiping my eyes as I type…you so eloquently describe what we are all going through and feeling. I got my daughter’s report card in the mail last week, and it felt like a giant boulder was crushing my chest as I read it.

  2. We are all holding that bag and trying not to be sad sacks.

    How grateful are we to children like Kate who get it?

    How horrible can 4th grade girls be?
    I sometimes stand and watch and am grateful I have a boy who appears not to see that side of others. I say appears because I don’t know what is going on in that head.

    I learnt yesterday that he is a master at working out the weak point for every teacher and utilising that point to get out of work…..Now if only that energy was spent on actually doing the work, it would be so much easier (and less stressful all round) but that wouldn’t be autism then would it?!

    Wattle

  3. Wow, I felt this. The frustration at regression when the routines go away…the horrors of mean girls in grade school…the beauty of Katie’s joy…the identifying with the mom desperate for someone to reach out to their child with special needs. This is so sweet, yet painful.

  4. Katie’s incredible. Just like her Mama.

    I’m always always grateful for the neighborhood kids who truly “see” Devin and make an effort from the 8 year old to the teenagers.

  5. You seem to find the “golden nugget” in every situation and your skill with putting them into words is beyond amazing. I marvel at your ability to see and take in the essence of each and every situation and to use your extensive mind and skills to bring them to the surface. You paint emotional pictures that in this case tear at the hearts of those that are fortunate enough to read your work. I am enriched by your insights and your ability to bring it to me and all the rest of us. Your babies will be fine because of what you see and do with them.
    I am such a proud dad………
    Love you,
    Dad

  6. What a wonderful sentiment. I can’t help thinking how J’s mom must really have it together. :) Yes, this time of year is fraught with instability and change. It plagues my little one as well, as it will today when I bring him to the family picnic at preschool. You know, the one I’m supposed to attend. The one that I am happy to attend, but invariably, I’m sure my little man will script out hanging his backpack and then “Say good-bye to Mom,” pushing me out the door. Only this time I’m staying, which I’m sure will perplex and discomfort him. Silly days out of the norm. We’ve got a slew of them this summer, but I will do my best to utilize his schedule at home and structure his days to the best of my ability. I’m so thankful for the summer program that will be run by his regular classroom teacher. So thankful, because it will make a world of difference for my little one.

  7. Fighting back the tears as I sit at my desk before I start my work day. Thank heavens for individuals like Katie, those who get it and take the time to interact. I am just hoping that as I ponder moving my 11 yr. old aspie back to public school in the fall, there are many like Katie who engage him and interact without judgement and very few fickle 5th graders to knock him down instead of helping him up. Thank you for your words of inspiration each and every day.

  8. A lot of people might think that your blog is about Brooke. That might be true in many cases, but as I’ve read more and more of your posts, I think that while they might be “about” Brooke, your blog is ultimately “for” Katie. What a wonderful gift it will be for her when she’s older and can read back through all of these posts and see how much of her life you truly understood and how deeply you love and value her. Many of us hold a bag, but have no one to give it to.

  9. I am trying to avoid crying, as I have been doing that non stop the past few days. 1)I hope my son ends up being that empathic to others because he will grow up with a sister who has Autism and 2)I hope I can one day be that mom who is handing over a bag to a child who has gone out of his/her way to be nice to K.

    Here come the waterworks….

  10. The last few days have been very emotional for me. I’ve been a non-stop crying mess. I should really stop reading your blog for a while because even when I’m not particularly emo it makes me cry. I can’t help it though. It helps me so much to know that I’m not alone. You’re not either. I hope Brooke and Katie both have a fab summer.

  11. We have all been that mom. We haven’t always all been the mom of a Katie, although my Eldest impresses me with her cheerful engagement with the other ASD kids at the HS where her sister also now studies.

    After a term volunteering in their classroom, Eldest knows them all as individuals and treats them as such outside of the class. I knew she was good with her sister. I’m proud that she’s a friend to all the other ASD kids.

  12. That’s how I felt the first time a little boy at daycare came up to me and told me my daughter was his friend. I wanted to hug him so hard – and then I wanted to find his parents and thank them, because empathy and understanding at that age, on that level, are not standard issue.

    Love to you for raising a daughter who gets it.

  13. Like so many others, this has stirred (even more) tears in me today. I hope and pray that there is a “Katie” in Nik’s future. For now, I stand on the sidelines cheering for your sweet, generous, thoughtful daughter; as difficult as things get, I hope she understands what an incredible girl she is.

    I am also saying prayers and making wishes that the seasonal regression/dysregulation swiftly leaves Brooke and all our children. xo

  14. It saddends me that we parents feel we have to reward children for being nice to our kids. I’ve done it myself. I’m so grateful to those kids who have shown kindness and accepted my girls. I hope for a world where all people are liked and accepted for who they are and not judged by their differences.

  15. There are so many emotions to deal with in this post. The fact that the girls are both finding this time hard is difficult for me as their Grammy to hear and to read. I’m also sorry to hear about Katie’s fourth grade traumas with a friend. The fact that Katie continues to “get it” and continues to reach out to all kids remains a joy to me. The fact that J’s mom stood there with the paper bag was both wonderful for her to do for Katie and so poignant because she felt she had to thank a child who would reach out to her son. I’m also so sorry that you and Luau can’t “catch a break” and not have all of these concerns.

    I love you all,
    Mom

  16. i’m always thrilled when katie stories are up…such a big heart and wise mind.

    and it’s great that she stays compassionate; she has a lot of difficult emotional terrain to navigate…must feel very frustrated at times, hurt…and yet she always comes out of it thinking about other people, their needs and uniqueness. like i said, when she inevitably runs for president one day, she’s got my vote all the way.

  17. love this post! my son’s preschool asked me yesterday if I wanted to hold him back a year. that was a stab at the heart reminding me of all that is ahead of us. this was a beautiful story. katie is such a special person and will be such an asset to the world.

  18. Oh, damn. Crying at work … My middle child has a boy with autism in her class, and he often asks if she can go to the motor room with him. Our “normal” children are going to be simply awesome adults.

  19. You have two wonderful children and I’m sure you are very proud of Katie. My wish for my son, who is on the spectrum, is that there will be many, many Katies in this world. It is children like her that make our kids feel like they have a friend. It is children like her that make Mamas like myself feel like our kids aren’t alone…like it will be okay.

    As always, thank you for your candor and willingness so share these moments with you.

  20. Tears in my eyes again, Jess, tears in my eyes. You do it every time, girlfriend. Katie is just so amazing.

    Home with Jake today, beginning his one week “interregnum” break between school & summer school. Just wrote a post about how I love my boy to pieces but I’m going to kiss the bus driver when he comes to pick Jake up next week. I so get where you are coming from.

    Big sigh & bigger hugs.

  21. A girl in my son’s k class requested to be placed with him in the same first grade class next year. When I heard, I just wanted to hug her with all my heart! I always feel like I should give these kids something to show my appreciation for what amazing people they are… I should have given her a bag like that!! Aw shucks.

  22. This was a fabulous post!! You have such an extraordinary daughter, I know how proud of her you must be!! But you are right, we ARE all holding the bag – and can only hope that our children are surrounded in life by people as wonderful as your Katie.

  23. gah. and here come the tears. i spend hour after hour, day after day, week after week working with children. and after all is said and done, i couldn’t care less if they know their colors or if they can count or add and subtract if they could have the heart that your amazing katie has. THAT Is what this is all about.

  24. Crying, crying, crying again! So very touching. Sometimes I feel the guilt of what my NT daughters know and endure in their young lives. But, as someone else said (in different words) that they will grow up to be so much more compassionate, understanding and tolerant of differences in others that they might not have otherwise been before autism came into our lives.

  25. crying with joy. Proud of Katie even as I’ve never had the honor to meet her. What you said about the reports and IEPs so true. Each time I see all those notes, and all the delays and the darn percentages, blah, blah, blah, I feel I want to dissapear. I hope that Brooke can adjust as soon as possible to the summer day’s new routines. Big hug!

  26. I also meant to say how I love how you conveyed every detail of your own observation of the interaction…how the mom looked at Brooke a bit too long, how her guard was up. I, too, am constantly taking in and dissecting every single nuance in situations like that.

    At this point, simply relaxing and enjoying a moment like that without holding my breath? It happens sometimes. But taking it for granted? Never.

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