Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Our Land: Autism and a walk through a forest

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Today’s Our Land was authored by my IRL BF Joanna, who I met through Tucker’s PAC (Preschool Autism Classroom). Her son Michael was officially diagnosed fairly early on, and, as many of you know, Tucker was not. I was lost. Confused. Alone and lonely and Joanna was the parent that I bonded with. At first, we bonded over our sons, and over the fact that they genuinely enjoy playing with one another.  There have been countless mornings when Tucker hasn’t wanted to leave the house until he has heard Michael’s name. As we grew to know one another better, we bonded over life.

She’s amazing and wonderful and has been, in many ways, my salvation on this journey towards accepting autism into my home, my life, and in my son. She’s also the one that I talk to when it comes to The Other Life Things. The me things, the work things, and the whatever things. In other words, she’s plain old awesome and has shared her story with Our Land today, again. Her first story was published here. I’m very thankful for her for her friendship, for her awesome son being Tucker’s best friend, and for her words. Here are hers, today:

Our Land: Autism and a walk through a forest

Let’s go for a walk. We are going to check out this magical, yet mysterious forest. I have been this way before but there are always surprises- some good, some hard, and some scary. I can show you how beautiful it can be, and let you know when we have to be careful. But there is a point to our hike, there is a message of sorts, and I am hoping we can bring it to life, together. Sometimes, I think this is how my son finds his way through the world as well, always trying to figure out what is helpful and necessary versus what is just interesting.

As we explore the intricacies of these woods, I am going to tell you a story. The story, like the forest, might stir up some hard feelings at the outset, but please bear with me.

There was a particularly difficult day that actually began the night before.  I got into a never-ending fight with my husband about needing more help, more sleep, and just more. And just before this fight, I was mean to my best friend, so neither my husband nor my friend were talking to me.

The next morning (the day in question), I woke up from a fitful night of sleep because Michael, my son, was struggling. His nightly solitary romp through the forest was more treacherous than normal.  He vacillated from actually crying in his sleep to screaming “no!”

In an attempt to help, I snuggled up close to him, wishing that I could join him in whatever thicket he was trapped, and help to free him.  It seemed that the comfort of my firm embrace was useful and that it allowed some temporary refuge. Unfortunately, his restless mind inevitably continued onward, determined to clear whatever obstacle it was encountering.   I could not help but wonder if overhearing my fight with his dad unleashed some of the forest’s demons, requiring a full night’s battle to suppress.

That morning, both Michael and I woke with bags under our eyes. Have you ever seen bags under a 4 1/2 year olds eyes? It makes you want to keep him home and play all day long. But, I couldn’t do that. I was exhausted and started to fill up with tears at the thought of having to entertain a kid with limitless energy for the day. So, we trudged forward.

Michael desperately needed a bath, which was part of the fight the night before.  He does not love his baths but, sometimes, if you introduce them in just the right way, he is reluctantly amenable. Once he is in the tub, I start to (prematurely) congratulate myself. I promise myself that half or at least one third of the battle has been won. Maybe we have come to peaceful clearing in the forest, as those places exist and are quite beautiful.

Michael and his dog

Except, I quickly realize that there was the issue of hair washing. In this particular set of circumstances, I would have normally skipped it, I did not have the patience, nor the desire, but since my hubby did the same thing for the last few days well … skipping was not an option.

The shampoo is medicated because, like everything else, things work a little differently for Michael, and we need to treat his dandruff or else we are dealing with big chunks of dried scalp glued to his hair. The problem with the shampoo is that it is not tear free, and it smells really badly. There is certain danger when someone tries to force external agents into the forest especially non-natural irritants, or challenging, unexpected demands.  It immediately disrupts the beauty and calm.  As a result, Michael moves from disgust during the application to vengeful rage when it is time to rinse.

This is just about where I lose it. I’m trying to get the soap out without him getting it in his eyes, because that will take the situation from a level 10 black diamond to something comparable to being carried off the slope in a spinal collar.

Somehow, in these split seconds, Michael seems to pick up on my distress, and, in an attempt to help, or regain some control, he dumps a cup of water over his head. Now, this could be seen as a good thing, movement towards independence, etc. but it seals our fate.

Of course- soap in the eyes.

Imagine not being able to see in the forest? Senses are so important, they enable information collection and processing and to be deprived or, even worse, injured via a sensory organ is close to natural disaster.

What ensues is a complete drowning of several clean towels in an attempt to save his eyes from the painful and relentless irritation. Michael starts to cry, and so do I.

Now, we are in the thick of it together – stuck in the scariest and probably most painful part of the forest with wildfire threatening.

Very soon after the tears start streaming down my face, Michael notices. He stops crying and starts to say “it’s ok mom?!” Not like a question, more like a plea. “Mommy … happy … mom! … No sad … happy, right?” Michael has these big brown eyes that I normally do not have the opportunity to stare into for as long as I would like, but this was different. Michael was begging me to feel better, using all of his tools to get his mommy to genuinely smile.

Of course, I want to cry more.  This is my little one who is not supposed to notice that others are in pain or even care, for that matter. Perhaps this is another unique thing about Michael but according to my friends with kids on the spectrum it’s not unusual at all.

Michael

My tears keep coming, but I smile, and say “Yes, Mommy happy. Michael happy?” There is a desperate back and forth as each of us tries to alleviate the other’s suffering.

Michael cannot return to any of his play until he is convinced that mommy is “happy.”  In my head, I know that I so desperately need to cry, but, at the same time, I can’t stand to see my little guy get so upset that I am upset.  And in the midst of all this pain, there is something very precious.

Do you know what it is? Can you see it? Sometimes, the forest makes it hard to see some of these things because there are so many things to see. I will admit, I did not see it, but I felt it.

Michael and I were genuinely connected in that moment … interacting … and communicating in the moment, in a back and forth manner- expressing and feeling our LOVE for each other.

When Michael was first diagnosed with autism and we felt lost in the forest, I used to pray that he would be able to say “I love you.” I told myself if he could just do that, I could regain a sense of direction and essentially handle all the rest.

I know that there are so many amazing parents, families, and children who do not get to have this experience, and, of course my heart goes out to them and everyone else with a loved one on the spectrum, but at that time, I thought I needed that.  I have learned a few things since I sent that prayer.

Love is felt, it is shared, and understood. It is not constrained by words. And neither are our kids.

Have you been here before or maybe in a similar forest? Probably most parents have but I’m guessing you definitely have if the love of your life is also on the spectrum.

Love is felt

I’m thinking Joanna is right. Here are our boys, playing together. Defying what we “knew” about autism. There IS love. Bonding. Friendship.

Tuck and Michael turtle

Tucker and Michael


  • Kerith Stull - Oh my goodness… I see that forest and just want to cry, too! What a beautiful and heartfelt description of brokenness. Can I please send Joanna a hug??April 23, 2014 – 10:06 amReplyCancel

    • Kristi Campbell - Definitely can send Joanna a hug, Kerith. I think the thing I love most about this piece is that while the forest is confusing and can feel like brokenness, she and her son really had an amazing connection of absolute love – a really meaningful exchange.April 23, 2014 – 11:47 amReplyCancel

  • Kerri - First, the next time I am in your area you need to invite Joanna to our play date. 🙂

    But can I say that sometimes I hate the forest? That is is so hard to be in that moment you cannot see the trees because you are battling the landscape with all your might. Joanna I think you need to allow yourself to cry. To piss off your husband and your friend. Because you just need to. This life isn’t what we planned on. The bonus is you know they will get it. It might take them a moment but they will.

    And if not, Kristi will punch them in the nose for you 🙂April 23, 2014 – 10:34 amReplyCancel

    • Kristi Campbell - Kerri, absolutely to having a playdate! Of course, the FIRST step in that would be that you actually let me know you’re coming before you’re like HERE and stuff… 😉
      And yeah, they WILL get it. But (scuffs toe in dirt) I might have been that friend. Maybe. Just saying. But I’ll punch other people in the nose! 😀April 23, 2014 – 11:49 amReplyCancel

  • Katia - What a beautiful love letter to your son, Joanna. You write so beautifully and with the forest metaphor you’ve made your struggle so relatable, almost palpable.The bags under the eyes broke my heart.

    What I love about Kristi’s blog is that even though I think I understand the special set of challenges that comes with the territory of raising a special needs child, whenever I read a post on this topic, I realize that I don’t and that there is still a lot to learn. The part where you talk about how you initially thought that an “I love you” from your child is all you needed felt extremely relatable, even familiar and I knew that this would have been my reaction to a similar situation. I’m glad that your “I love yous” are still being delivered, although in the most unexpected ways. “Unexpected” has been the defining trait of parenting for me, in the last four years, that I’ve been doing it 🙂April 23, 2014 – 10:50 amReplyCancel

    • Kristi Campbell - I agree Katia about Joanna’s writing and the forest metaphor. Also, can I just say that you’re awesome? That you care so much and are learning about special needs kids means you’re doing your children, and the world, a great service because you already are willing to accept and embrace. That’s huge.
      And yeah, I think that “unexpected” is something ALL parents can relate to – whether special needs or not. The fact that none of us had any idea what parenting was like before we became parents is what makes us all more similar than different. xoApril 23, 2014 – 12:00 pmReplyCancel

  • Michele - What a beautiful post about genuine LOVE. And great pictures of such a cherished friendship!April 23, 2014 – 10:50 amReplyCancel

  • Janine Huldie - Neither of my children have autism, but bath time here is absolutely awful and can relate to having more then a few of our daily baths turn into all of us crying, because neither of my girls like getting bath water in their eyes. So, that alone has left me feeling quite helpless and definitely upset, too. But I loved how this ended for both you and Michael and I think moms in general could very much relate. Thank you so much for sharing.April 23, 2014 – 11:27 amReplyCancel

    • Kristi Campbell - Thanks, Janine. I think moms in general can relate too, and I love the ending.April 23, 2014 – 12:23 pmReplyCancel

  • Sarah - The forest metaphor is so well-used. So apt for so many situations. Joanna, I also appreciated your honesty about fights with your husband. Having a child with special needs adds another element of stress to a relationship. I’m so glad Michael and Tucker have each other!April 23, 2014 – 12:13 pmReplyCancel

    • Kristi Campbell - Sarah, I agree about the forest metaphor and yeah, special needs does add stress to a relationship. Sigh. And I am SO glad Tucker and Michael have each other (and that their moms have each other too!).April 23, 2014 – 12:32 pmReplyCancel

  • Michelle Liew - That trek through the forest is a tough one many will not undetstand unless you’ve been there, done that. Wonderful metaphor!!April 23, 2014 – 12:27 pmReplyCancel

    • Kristi Campbell - Thanks Michelle! I know Joanna is reading everybody’s awesome comments. Thanks for yours!April 24, 2014 – 8:51 amReplyCancel

  • Emily - As others have already mentioned, the forest metaphor is a great one. I used to pray for that “I love you” too and even though he’s older and can express himself extremely well, using words to express emotions doesn’t come easy. However, you are so so right that love is felt and shared and does not need to be spoken with words. Thank you for that important reminder.April 23, 2014 – 12:59 pmReplyCancel

  • Linda Atwell - Out One Ear - These boys are absolutely adorable…and precious. It is so hard when our kids don’t communicate the same way as we believe to be “typical.” There are so many times that Lindsey doesn’t seem to “get it,” but then she does. She suddenly does. And there is such relief (on my part) because we are finally, finally, finally on the same page. Often it is only for a moment, but that moment is so special. Joanna did an incredible job with this piece, taking me along on the journey. I wanted to cry too. Thanks for sharing Kristi.April 23, 2014 – 1:22 pmReplyCancel

    • Kristi Campbell - Thanks Linda! I love that you have those moments with Lindsay now – even when they’re brief. I agree that Joanna rocked this! Also know that Nick (and all of you) have been in my thoughts – I hope they’re finding some answers and help for him!!!April 24, 2014 – 9:06 amReplyCancel

  • Kimberly - I am always trying to find ways to understand what my nephew goes through and this metaphor is so beautiful. He is such a precious child with a heart of pure gold.
    Each child has intricacies…each one is different…and different is beautiful. xoApril 23, 2014 – 1:36 pmReplyCancel

  • Lisa @ Golden Spoons - I love the metaphor of the forest and I think it is a beautiful description of a difficult struggle. Thanks for sharing your words with us, Joanna. Both the boys are precious and their friendship is such beautiful gift!April 23, 2014 – 1:44 pmReplyCancel

  • Michelle Liew - Well said. Love is felt, not constrained. And EVERYONE can feel it. April 23, 2014 – 2:59 pmReplyCancel

  • Tarana - This is one of the most beautiful pieces of writing I’ve read in a long time. I hope your days are filled with bright sunshine as you navigate that forest.April 23, 2014 – 3:05 pmReplyCancel

  • Tamara - Please tell me that Michael can come along on our photoshoot!
    This is such a beautiful and vivid way of describing this “forest.” I felt like I could understand so much more.
    I hope the light shines in a lot, in this forest.April 23, 2014 – 3:29 pmReplyCancel

    • Kristi Campbell - Tamara, I’ll ask if Michael can come along! And I hope the light shines a lot too!April 24, 2014 – 9:58 amReplyCancel

  • Christine Carter - What a gorgeous and vivid post about the pains and the intense joys of being a mother- whatever struggles your children may have. LOVE knows no bounds… <3April 23, 2014 – 5:07 pmReplyCancel

  • Joanna - Thanks to everyone for the amazingly kind and supportive comments(and hug), I am sort of blown away! I am deeply touched that so many moms/parents can relate whether your child has special needs or not. And, of course, thanks to Kristi for giving me the chance to share my story via FN, and … well, the intro was super nice too! Thanks again.April 23, 2014 – 5:25 pmReplyCancel

    • Kristi Campbell - Thanks for sharing your story and everybody’s right – it IS really beautiful. I love it. And the intro is all true stuff!! <3April 24, 2014 – 10:05 amReplyCancel

  • Dana - I remember reading about autism in college, and the textbooks talked about how children with autism don’t make personal connections. Granted that was twenty years ago, but how wrong that was. Is. But hearing it from you, Joanna, is so much more powerful than reading any textbook. Keep defying what we “know” about autism – we all need to know something new and hopeful.April 23, 2014 – 8:17 pmReplyCancel

    • Kristi Campbell - Dana, when I first wondered whether Tucker has it, I thought definitely not because of what I learned so many years ago. And I agree that Joanna’s words are much more powerful (and REAL) than some old textbook.April 24, 2014 – 10:09 amReplyCancel

  • Angel The Alien - I’ll never believe anyone who says people with autism can’t feel empathy. People might not be able to verbally communicate that they feel your pain, or they might not know a “socially acceptable” way to show that they feel your pain, but they do feel it and they do care. Michael sounds like a very sweet little boy. I’m glad he has a mama like you to guide him through the enchanted forest!April 23, 2014 – 8:32 pmReplyCancel

    • Kristi Campbell - Thanks Angel – I know you get it and I appreciate the reminder from you that just because some can’t show how they feel others’ pain doesn’t mean they don’t feel it. And Michael is a super-sweet boy!April 24, 2014 – 10:11 amReplyCancel

  • Deb @ Urban Moo Cow - Lovely story. I love the sentiment that sometimes words don’t matter. In fact, often, words are limiting when love is, in reality, boundless. Your little boy is beautiful.April 24, 2014 – 1:58 pmReplyCancel

  • Michelle @ A Dish of Daily Life - Absolutely beautiful. I think moms everywhere can relate. Our struggles may be different, but they are there. Michael sounds like a wonderful little boy. He’s adorable!April 25, 2014 – 8:05 amReplyCancel

  • K - Wow….So so so beautiful. Your words really resonated with me. I’m not a mom, so I can’t directly relate to the challenges (and joys!) you must experience, but your writing brought me to that forest and allowed me a little glimpse into your life with your son. Tucker and Michael are so lucky to have each other. (: Thank you for sharing this with us!April 26, 2014 – 1:03 pmReplyCancel

  • Jen Lauren Schneider Kehl - This is such a beautiful portrayal of a mom’s experience with Autism. Yes I used Autism and Beautiful in the same sentence! It is, he is, and this shared moment IS. April 26, 2014 – 6:16 pmReplyCancel

  • Anna Fitfunner - Hi: Wonderful post! A quick point, for those new to parenting ASD kids. Kids with autism can absolutely learn to recognize emotions in other people. They’re just not very facile with it, and may have trouble learning more complex emotions. So it is really helpful and wonderful to ASD kids for their parent to recognize a moment when theirr child is trying to understand emotions of another. You can then encourage your child and help them to learn more.

    That’s one of the untold secrets of parenting ASD kids: every teaching moment that you put in can cumulatively make an enormous difference in the life of your child.

    AApril 28, 2014 – 3:48 pmReplyCancel

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