this place

*

Love is a sacred reserve of energy; it is like the blood of spiritual evolution. 

~ Pierre Teilhard de Chardin

**

Courage is not the absence of fear, but rather the judgement that something else is more important than fear.

~Ambrose Redmoon

***

From Happy Squeal, October, 2012 …

June, 2006

Brooke is three.

I don’t understand why we’re here. We’ve got to be in the wrong place. I know I asked for help, but an autism specialist? This makes no sense. My baby can talk, so it can’t be autism — right? For God sake, someone say Right.

The word took the air out of the room, sent me running for the bathroom, retching over the cold porcelain, searching for something. It was huge. It was terrifying. It couldn’t be right. But I was the one who had sounded the alarm. I was the one who knew we shouldn’t be waiting. I was the one desperate for help. But autism?

The waiting room is small. One family comes and goes while we wait, replaced by another. I focus on them. It’s easier.

I don’t remember who was with her – was it her mom? Her dad? I only remember the girl – a young teenager. Fourteen maybe? Fifteen? And the eerie familiarity of that high-pitched hum.

She can’t sit still. She roams the tiny waiting area. Up. Down. Up. Around. Down. All the while, humming her song. I know that song.

It happens in the kitchen. Brooke running like the wind from the den to the office. Hey, silly squealer! we yell after her. It happens in the car. What’s up, squealer? we ask. She doesn’t answer. She never answers. It happens outside in the wind. When she’s free. When that rare look of quiet contentment comes over her face. Hey, happy squealer. we say.

I will myself to look at Luau. Tears roll down my cheeks. He’s been watching too. And listening. He extends a hand, but he can’t reach me. The tiny waiting room is now five miles wide.

My girl squeals. It’s sweet and cute and funny. She’s three.

This girl is a teenager.

I watch the adult with her – Damn it, I can’t remember anymore – was it her mom? her dad? I watch them reel her in. Keep her safe.

She’s a teenager.

It’s too much.

The squeal is sweet and funny and cute. And three.

I’m terrified.

*

From Context, July, 2010 …

It scared me for the future. It scared me for the days ahead as these same girls start talking about boys and clothes and music and gossiping behind each other’s backs like I know they will. Like Katie’s classmates do just two years down the line. Like some of these girls already do. It scared me for middle school when the rules no longer make sense and the social scene becomes unwieldy and treacherous for even the most savvy of players.

It scared me for that moment in and of itself. The one unfolding right in front of me.

It scared me because she just looked so God-damned different from everyone around her and because for the first time, I truly wondered if perhaps she knew it.

And then scared turned to sad. And that is where I lived.

*

From The Storm, November, 2009 …

Suddenly and without warning, I was choking on the silent scream of impotent rage. For a fraction of a second, I couldn’t see. The room went dark and the air disappeared. I couldn’t move. I had this strange thought afterwards – that I’d wanted to flip the table. Just stand up and turn it over. To cause upheaval, commotion, noise. But as in a slow motion nightmare, I was paralyzed.

Just as quickly as it had come, it passed. The only remnants were the tears on my face and the tension in every muscle in my body. I felt like I’d been in a car wreck.

I get sad. I do. I get sad and I get tired. I get frustrated and weary. But until that day, I guess I hadn’t gotten angry in a really long time. That day, I was ANGRY.

I was ANGRY that my girl has to work so God damned hard to do what seems to come so easily for everyone else. I was ANGRY that she is trying to figure out the difference between a color and a shape when everyone around her is talking about radius and circumference. I was ANGRY that she has to write and erase and write and erase to get one God damned word on a page. I was ANGRY that she has to puzzle through every single interaction that is somehow so natural for everyone around her. I was ANGRY that she has to struggle to keep up with a world whose pace and focus are so completely different from hers. I was ANGRY that every little thing is so God damned hard for her.

Why my girl?

Why my baby?

Why anyone’s baby?

Just why?

*

From She Doesn’t Even Know, January, 2009 …

A little boy across the table from Brooke chimed in.

“Yeah, you’re doing a great job making a mess, Brooke. Nice mess. What a great job. You’re just dumb.”

He barely finished the last sentence before Katie angrily shot back.

“Stop making fun of my sister.”

“But she doesn’t even pay attention,” he said. “Watch this.”

He looked right at my baby girl, diligently painting her project and he shouted, “Hey Brooke, DOYNG!”

She didn’t flinch. She kept painting.

“See?” he said, looking around the table at his captive audience. He looked smug, having proven his point. “She doesn’t even pay attention.”

Hot tears ran down my cheeks in the car on the way home. My stomach churned with the bile of anger and fear. Is this what happens at school? Is this Brooke’s life when we’re not around?

The kids are getting older. They’re seeing the differences. They’re seizing on one another’s vulnerabilities. It’s what kids do. Hell, it’s what adults do.

He may be right; she may not know. She may not understand. I’m not convinced. She sees so much more than we think she does. But even if she doesn’t know now, she will. Then what?

Can I protect her from the sting of ignorance?

*

From Deebahs, September, 2008 …

Bottom line is, I knew she’d be OK. Her aide would be there to support her. She would take her out of the room when it got to be too much. She would be taken care of. She would be safe. I knew all that.

What I worried about was perception.

Yes, I know we’d all like to say ‘Screw it. Who cares what other people think? My kid is my kid and she’s glorious and to hell with anyone who sees anything differently.’ But here’s the thing, my friends. We’ve all gone to school. We all know that perception matters. We are lying to ourselves if we say that a kid’s school experience (especially in a school with only three to four classes per grade) isn’t defined in large part by how they are treated by other kids.

So I worry. I worry because my baby wants to do Deebahs, whatever the hell that may be, and she has no capacity to discuss Polly Pockets or butterfly rings or the things that will likely be of interest to her peers. I worry because these are, in all likelihood, the same kids that she will be in school with until high school. I worry because I remember my child being called names and I know that if she doesn’t see it now, she will. I worry because I can’t not worry.

*

From The Rabbit Hole, August, 2010 …

I watch her, trying not to read too much into her body language. I pray that she doesn’t feel the sting, but I am terrified that she does.

For so long she (seemed to) have the luxury of oblivion. Burgeoning awareness is a double-edged sword.

I kiss the top of her head, wishing that loving her enough could somehow make this all easier.

Luau nudges me from three seats down. “Stay out of the rabbit hole, babe,” he says. “It’s O.K.”

I nod. “I hear ya, hon,” I respond. “I’m fine’.

We both know I’m lying.

*

Diary’s Facebook status on Tuesday night ..

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Oh how I wish you could hear the delicious stimmy squeal of delight that my girl makes as her wheels glide across the pavement. And to think there was a time not so long ago that I feared that very squeal because it would *gasp* set her apart from the coveted norm.

Today, I am so grateful that it does, because in all my life I have yet to encounter a greater expression of unadulterated joy.

#SheWins

*

My personal Facebook status later that evening ..

I think I may have summed up nearly the whole of my belief system in one comment …

@A – Brooke is ten, one year away from middle school. so please believe me when I say that I understand and share your fears. But I’d so much rather revel in her joy and in so doing help her to see the beauty in her differences than to allow her to internalize my fears about how they will affect her going forward.

She is different. That is what it is. Her difference is neither good nor bad, less nor more. Just different. She will always stand out — and because of that she has been and she will be teased. It sucks, but for me, the best defense is self-acceptance, self-love and an impenetrable wall of self-esteem built with the bricks of one joyful squeal at a time.

Setting her up to suppress the most fundamental parts of who she is strikes me as a losing proposition, whether she is successful at it or not.

So it’s not that I don’t share your fears. It’s that this is my strategy to overcome them.

xo

J

*

It’s taken me the better part of seven years to come to this place. A place that still evolves and shifts. A place where, at times, I still lose my footing, backslide and climb again. A place from where I can still see the deep valleys below, and the mountains yet to climb, but so too where the view — the one right here in this very place — is breathtaking.

This is the place in which I do my best to reside …

My daughter is different. We can teach her appropriate and expected behavior until the cows come home (and we will, for, like it or not, it is in many ways the on-ramp to participation in the community), but she will always be different. One ‘behavior’ will give way to the next and the next again, for her expression of her internal world is not the same as that of most other denizens of the external world.

We can do our damnedest to educate those around her – to sensitize them to difference, to introduce them to other ways of thinking, feeling, experiencing the world. We can appeal to them for empathy and compassion, for recognition of shared humanity and God-willing, convince them to join us in a celebration of the glorious spectrum of human diversity. And we do. Jesus, we do.

And, while we do all that, we can enjoy the hell out of her, not just despite her differences but sometimes even BECAUSE of them. We can revel in the purity of her joy and learn from her how to express our own feelings without pretense, without filter, without worry for how they will be received. We can follow her on a journey that teaches us about ourselves, about our world, about how we connect with one another — and about just how flimsy our social constructs really are.

In short, we can live inside our fear for the future or we can say to hell with it and run alongside her as she blazes a path that leads us unwittingly to our own self-acceptance as we guide her to hers.

And we can invite everyone with whom we come into contact to join us on that journey. An appealing invitation, I dare say, for it leads to a place that is bathed in hope and love and a true sense of connection with one another and ourselves.

A place so damned happy you can’t help but squeal.

37 thoughts on “this place

  1. I vote for saying:

    “…to hell with it and running alongside her as she blazes a path that leads us unwittingly to our own self-acceptance as we guide her to hers”.

    Love you,
    Mom

  2. I have been following you for quite some time now, and have liked statuses or made a comment on FB from time to time. Today is a day I feel I need to reach out to you. This was a perfect post to say what I am feeling today. I have an 11 year old boy, who has struggled, and been targeted by others from time to time. Today marks a huge transition for him, one that I wouldn’t be able to see happening even 1 year ago. But one I am confident he will do great with. He has shown me over the last year courage and strength and maturity which is how we got to today. He will be leaving his safe haven. Graduating from the school that gave him strength to get over the abuse of the past. He will be moving on to a new school in 10 days and making new friends. And he’s doing this with a smile and acceptance in his own right. I have had that fear, from diagnosis, to fighting the school district, to wondering what can make a difference. In the end, it’s been acceptance for who he is and all the love I can give him. Thank you for this post today, a day that is hugely important in his life, and in his ability to finally accept change. And for me to recognize that your words pretty much sum up my feelings, but I could never express them as eloquently as you! Thank you

    • In the end, it’s been acceptance for who he is and all the love I can give him.

      amen,.

      and all the best to him in his new school. sounds like he’s going to be just fine 🙂

  3. None of it is easy but she will just keep growing and developing and she will find her place and her happiness, perhaps even better than most of us because she has a loving support system and a mommy beyond all others….
    Love you,
    Dad

  4. Jess, is it crazy to love the hell out of you and never have met you? 😉 I needed this so thank you. I’m sitting at my kitchen table right now filling out all these flipping forms for the Lurie center for my son’s next big assessment and I’m crying because I hate these questions. “Does he or she do strange things?” What does that even mean? I eat cake for breakfast sometimes, some would say that’s strange!! But I guess I know what they mean and it kills. I’ve had these forms for 2 months and I just put it off until this morning because I loathe them that much. Our appointment is at 10am this morning! I’m feeling angry, and asking why he has to struggle so much, why him a d just all that stuff that never leads to anything good. But then I catch myself because I know I’m blessed and it could be worse…but I’m still angry and sad. I go through this every time I have to fill this kind of paperwork out, so I put it off. So when I take a break from it and see this post, I cry some more. However, this time it’s because I know you have felt a range of emotions through your journey and you gave me hope that I’ll get there to. Some days are tougher than others, but it’s so awesome to know I’m not alone. Thank you from the bottom of my heart.

  5. I saw the exchange on FB on Tuesday night, and it’s been in my mind ever since. The thing that we sometimes forget, I think, is that bullying (because the post from Jan. 2009 goes beyond “teasing”- let’s call it what it is) is never the fault of the victim. It’s the fault of the bully. Our kids should not be shamed for finding joy in unexpected places. We work on teaching expected behavior as well, along with basic manners and kindess because that’s part of the job description for parenting, but I’m starting to understand that it’s ok if our son doesn’t love the latest action hero, and all right if he’s not into the latest sports craze. His interests and passions are as valid as those of his classmates, even if they’re not stuff that your typical kid is into.
    My kid is a math geek- when he was very little, therapists told us that his obsession with numbers was something to be discouraged. Today, my 8 year old is doing algebra and geometry way above his grade level. It’s a gift, and working with numbers makes him happy in a way that his not-so-math-gifted Mom will never understand;-) I’m so glad that we listened to our instincts, and are finding ways to let that gift fly- seeing how much joy he is taking from his math lessons is making me realize how much we were limiting him before.

    • why, why, why are we so often told to discourage our children from pursuing the things that they love? for the love of god, what if mrs einstein had told albert to stop perseverating on physics and go learn how to kick a ball.

      i’m so glad you’re listening to your gut and he has found something that brings him such joy and success.

  6. You have no idea how much I needed to read this right now. Thank you. My son is going into high school in the fall and I’m honestly close to terrified. I’m going to print this post and read it repeatedly. Especially on those days when my armour is thin.

  7. These posts are awesome. I read them with tears, first of sadness because I remember all those same feelings and thoughts when I was in the Doctors office with my daughter and we first heard the word autism, and then your descriptions of all the thoughts/feelings that followed are so spot on to what I feel/felt and finally tears of joy because I too have finally gotten to that place where I can let my daughter be who she is and learn from her. Her life is (usually) an expression of pure joy. Wonderful writing, thanks for sharing.

  8. Having this community has pulled me out of such a deep depression. It’s given me the power to say ‘No, that’s not what my son needs’. ‘No, that’s not who my son is.’ He’s just fine, thank you very much, however, he needs help with … It’s your honesty about the process of coming to acceptance, Jess. It lets us be kind to ourselves when we make mistakes.

    Last night I was listening to NPR while doing the dishes. My son was at the computer in the kitchen. And NPR starts talking about (in very ominous tone) how children with autism grow up to be adults with autism. My son kinda whimpers and says “I don’t like that”. And I could say – and believe it – that NPR doesn’t know what it’s talking about. That a big part of his struggles are because the world is set up for NT people, like it’s set up for right-handed people. And he may have to spend some of his time educating people about autism. Since he lives in an NT world, he needs to be able to negotiate it – but that means demanding it accept him as he is sometimes, and making the effort to ‘fit in’ other times. And he gets to choose which.

    • oh how this kills me. it’s this that people don’t seem to get. that our kids are LISTENING, that autistic adults are LISTENING, the messages of gloom and doom hurt real people.

      but this ..

      Since he lives in an NT world, he needs to be able to negotiate it – but that means demanding it accept him as he is sometimes, and making the effort to ‘fit in’ other times. And he gets to choose which.

      a thousand times yes.

    • And what we need to find our way to, is a world that says ‘Right-handed children grow up to be….. right handed adults…’ Um, yeah. So? Yes, our kids will grow up to be adults with autism, or autistic adults, or however you want to phrase it. And that’s ok, because what is the alternative? They don’t grow up? They get hidden away somewhere because it’s not acceptable to be 45 and still like Looney Tunes? (my dh would have had to have been locked up years ago for that…)

      We’re making progress. It’s not fast, but change of this magnitude never is. Different is scary – no matter what the difference is. Difference that we don’t truly understand (yet) is terrifying, more to some than to others. But we are making progress. That doesn’t help much in the day to day struggle, I know, but everything every one of us does is making it better for the future.

      • That doesn’t help much in the day to day struggle, I know, but everything every one of us does is making it better for the future.

        Yes.

  9. Comment:

    Thank you for this today, I needed it!

    Comment:

    AMEN!

    Comment:

    …let’s run alongside! I’m tired of worrying…let’s LIVE 🙂

    Comment:

    I need to hear this. Every day. Thank you.

    Comment:

    Love, love, love! Yes to running alongside our amazing kids everyday!

    Comment:

    That. Yes. I don’t worry about what others think. I used to until I realised I was going to stand out either way. It’s tough, but I’d rather survive than be a squiggly mess of tangled compressed nerves on the insides.

    Comment:

    Yes!!! Letting our kids by kids no matter what, ASD or NT, letting them be who they are!!!

    Comment:

    It’s a process. It was really hard for me when K was younger. Now, I have settled into “it is what it is” and I have to focus on the positives and fully accept whatever life has in store. You just realize, what am I fighting? My kid? To what end? It’s been 6 yrs since we heard the word autism, and a lot has changed with how I view it and my daughter. Once you find that acceptance, seriously, life is just so much more peaceful for everyone.

    Comment:

    Amen! Everyday is progress! We put our son first- who cares what other people think? It’s always been about our son’s progress… and it always will be. 🙂

    Comment:

    I am in tears. It’s like every word you wrote was coming from my heart and my mind. My girl is Brooke’s age and they are SO similar and your journey is so much like mine I can’t believe it. All of the feelings, and worries in your blog excerpts, they’re what I felt/feel. I’m still in the “worry” place. But your recent post has been stuck in my head. I’m thinking about printing it and taping it up so when the “worry tapes” start playing in my mind I can read it and remember it. I have to share this blog post so that maybe my friends and family can understand what the journey is like. Thanks Jess.

    Comment:

    Every day is a big step forward and a lot of little steps back.
    Daniel is regressing: every other phrase out of his mouth is about Thomas the Tank Engine.
    I have no services- he’s out of school, and there are a lot of younger children joining the waiting list for said services, every damned day.
    Still, he’s my boy. He’s sweet, gentle and funds the funny in most things. It’s that I focus on.

    Comment:

    Jess, I can’t even begin to tell you how helpful your blog and page are to me. One of my grandsons is on the spectrum and while we generally get by with just observing and listening to him to help figure out the best way to work with each other, it also helps to know other’s experiences. One case this past week his sister and her friend told him to get away on a day of melt downs and he tried to run away at 8 years old. First time, he’s never been a wanderer, but now we’re working on a plan and have a recent photo of him on our phones to make sending it to other people fast from wherever we are. I also find your blog and page helpful in balancing between gaining better coping skills to deal with the world and keeping the qualities that make him uniquely “him”. I just met him 4 years ago, (he’s not genetically related to me) and I couldn’t love him any more just how he is.

    Comment:

    Thank you Jess. You always say just what I need to hear.

    Comment:

    Wonderful posts!

  10. The thing that really makes this post…FOR ME…is this: “My daughter is different. We can teach her appropriate and expected behavior until the cows come home (and we will, for, like it or not, it is in many ways the on-ramp to participation in the community), but she will always be different.”

    Because, when I saw just the excerpt, when I saw the Diary FB page comment last night, I felt inadvertently judged for the efforts we make to teach “appropriate and expected behavior” to our son. But then, I got here, and I realized that you’re not telling me that what I do is wrong or evil. It’s OK to teach accepted behavior. It’s just not OK to squelch or destroy those things that make or express our kids’ joy while we’re doing it.

    And I’m all in on that. Thank you for both the words of wisdom and optimism, and the nod toward reality, and for helping to reinforce how one can live both wisely and “real”ly at the same time.

    • You know, it took me years to realize that none of this is — or can be — an all or none proposition. In Welcome to the Club I talk about taking bits and pieces of different practices and theories and, with them, creating your child’s ‘quilt.’

      Our lives are real; they’re not theoretical. They’re messy. They’ll never fall in line with a textbook. Our kids are all different (not in the broader sense; I mean different from one another.) Nothing will work exactly the same way for one child and one family as it will for another.

      Is ABA useful for my kid? Yup. Breaking down information into small, parts and measuring and monitoring success is a wonderful method for helping her learn. Do I subscribe to it in its purest form? Hell no.

      Do I love much of the theory behind Floortime? Yes. Was my family capable of adopting it 24/7? No.

      Do I believe that meds are a great long-term solution? No. (Actually, let’s go with hell no.) But do we use them to help alleviate Brooke’s crippling anxiety and thereby reduce her self-injurious behaviors? Uh, yeah.

      For me, the ultimate goal that has emerged in terms of the balance is a tripod:

      1. Give her the tools that she needs to navigate the NT world effectively (listed hierarchically – the ability to communicate, social skills, manners, understanding of societal expectations)

      2. Help everyone else to open their minds to difference, to broaden their expectation of interactions and to honor the inherent humanity and worth of everyone, regardless of how different their experience might be from them.

      3. Give her the tools to accept, love and value herself enough that she can proudly be exactly who she is – and when she encounters those who don’t get it, they will not break her.

      None of these things are mutually exclusive. We can give her the tools to navigate the world without forcing her to suppress who she is fundamentally. We can medicate her for anxiety while searching for other ways to mitigate it so that ultimately the drugs won’t be necessary. We can teach everyone else to get it while teaching her that evolution takes time and she is strong enough to handle those who aren’t there yet.

      I’m rambling. My point .. lots of stuff can happen at the same time. Thank you for your comment!

      • THIS is the post I needed to read! I already knew a lot of your story from following your blog – but this is the one I needed today! It is definitely not all or none here! And sometimes the folks suggesting the program/meds/etc. don’t seem to get that! It just feels good to know that someone else does! Thank you! Because all of the theoretical pieces we have tried, practices we have used parts of, therapies tweaked to work for us….they have all helped us get to where we are now! And I mostly like this place!
        KT

  11. Wow. I hope this post goes on your list for people who are new to your blog. It’s that good and that important. I love your blog and the community that you have drawn together. My granddaughter (also autistic) just turned 9 and she deserves to be loved and celebrated in all her squealy, flappy, bouncy glory.

  12. Yes! Yes! Yes! Thank god for you, Jess. My son is only 4 1/2 but you are helping me prepare for the years ahead in so many ways as a parent, advocate, and human being. A few months ago in soccer, I overheard some of the boys remarking about his differences in a not so kind way. It stung so badly. I wanted to scoop him up and run out of there. A few days later after I processed it, and thought: What would Jess Wilson do?, I decided to ask the coach if I could talk to the kids about my son. He was beyond awesome about it and honestly, his preface was more amazing than the bumbling jumble of words which came out of my mouth. But it was a start. And do you know what happen the next time? The boy who had been picking on him, cautiously grabbed my son’s hand and brought him over to the group and encouraged him to play with them. Education, exposure, and desensitization are what kids need early on and it seems that they start to get it. Thank you, Jess, for blazing the way in your compassionate thoughtful way.

    And because I am now too serious for my own comfort level, I will say, I’m totally going to make a WWJWD bracelet. 😉

  13. Comment:

    Recently, in the midst of a traumatic event with our oldest daughter on the spectrum, I forgot how to breathe. My fear level was so intense, so all-consuming, I was unable to look at the present. I was staring dead-on into the future, which was filled with dozens of terrifying possible outcomes, ominous and threatening. And the mental tape of the trauma was in a continuous loop in my mind’s eye. And, I. Could. Not. Breathe. I would have loved to flip a few tables, to have screamed in rage, and torn my clothes. And, none of it would have changed a thing. So, maybe this advice seems obvious to some, but I was not doing much logical thinking at the time. I was one giant ball of tangled emotion when I talked to our therapist. And she threw me the lifeline I needed. Stay IN the present. Do NOT dwell in the past, and, do not stare into the future. STAY PRESENT. Deal with what you know. Live and love NOW. You have power NOW, not over anything that has already happened, and not over anything that may happen in the future. Your power and strength are in the here and now. She had to keep hammering those same phrases into me, to press through the cloud of fear. Every time I felt tempted to replay the events, I had to choose NOT to. And when I started to dread the future, I had to choose not to go there. Your description of running alongside of Brooke reminded me of that. Staying present. Living there and absorbing the joy.

  14. Absolutely beautiful!! Thank you for this! I struggle with all this often and for some reason the tragedy of Alex has awoken so many scary feelings for me about the future.. about acceptance.. about love and trust. As I have struggled the last week, I have reveled in the beauty of my son and all the wonderful love and joy he brings to my life. His joy is unabated by social convention, as is his frustration, but I have chosen to run alongside. Our kids are remarkable, amazing and utterly beautiful and I will continue to shout it to anyone who will listen!!

  15. And we can invite everyone with whom we come into contact to join us on that journey. An appealing invitation, I dare say, for it leads to a place that is bathed in hope and love and a true sense of connection with one another and ourselves.

    A place so damned happy you can’t help but squeal.

    Thank you for inviting me to join you. I have learned so much on your page, about despair and tough times but also about pure , unadulterated joy and love.
    Thanks

  16. What I love about this post is the fact that we can acknowledge that while giving our kids the tools to navigate our loud, confusing world, we can still embrace the elements of them that make them such wonderful individuals. And I LOVE Angeerah’s comment. Awareness in action!

  17. This post has me in tears and remembering when I first came across your words, how they mirrored the ones in my own head. When my son’s preschool classmate greeted him by saying “Hey there little screamer” and I watched the teenaged boy in the waiting room pacing and hooting like my own little boy…And I will always be grateful to you for making this place for us to come and learn and share and remember to enjoy our children, each of them just as they are. Much love to you and your beautiful family!

  18. How our perspective changes over time is amazing. I still worry about my littles, especially Silly, because he cannot express what is going on so if he is being bullied or teased, I don’t know. I just know that something is hurting him. I see it in his face and his eyes. The other kids are more vocal and are starting to understand that they are different but they don’t care – they smile and laugh and play. I hope they continue with that confidence because they will need it as they continue to grow. I will keep reminding them of just how perfect they are because they are different. Rocking, squeals, flapping and all!

  19. Thank you for this. It is so good to hear and it gives me the strength to be OK with different for my son’s sake. He’s entering 1st grade next year – mainstreamed into the class. Kindergarten went pretty well, but of course was challenging. I’m going to be nervous EVERY YEAR, I know. I’m one of the “lucky” parents whose child has been “lightly brushed”, but I see how he is different, how he is quirky, and even the JOY that comes from him is looked at with a raised eyebrow because it is SO joyous. It drives me crazy. I myself was no stranger to teasing – I was a geek in school, and we moved a lot so I never fit in [except with the other geeks 🙂 LOL ].

    Your blog has given me inspiration to find out more about inclusion, about disclosure, about how to communicate with teachers to make HIS and THEIR jobs easier in school, to help build understanding with the other kids so they can be little messengers of acceptance as they grow.

    Thank you SO much.

  20. I love this post, but it makes me so sad. I am not where you are. I wish I were. My girl is different too. I do enjoy her and her differences a lot of days. I do. Her moderate cognitive impairment along with her severe auditory processing disorder and sensory processing disorder and all the medical issues and psychological issues just make it so, so hard. So hard. I want to enjoy her. I want to revel in her for her. But I am just not there. I spend so much time frustrated with the struggles she has to endure and the people around her that don’t support her and the kids that pick on her, the fact that this is the 3rd school district in 4 years that she has gone into and while it is better than the other 2, they still don’t want to give her all the supports she needs and want to deny and fight me on everything.

    My perspective has changed over the 4 years since I adopted her. She wasn’t diagnosed with basically anything when she came to me. So, I, like most parents, ran the gauntlet of emotions of getting the diagnosis. But if I were to be brutally honest, if I had the power to change her, I would. Not for myself but for the cruel world she faces. I love her for her. If we lived in a bubble, I wouldn’t mind if she stayed exactly as she is, but the world is a cruel place and it makes my heart hurt for her to be teased and hurt. She takes everything to heart so intensely. Does this make me a bad person? I don’t know. I feel like a bad person. I love her fiercely and only want the best for her. I am rambling. I don’t seem to be able to have the words to express what is in my heart and mind. I guess I hope that one day I can get where you are. In the meantime, I will keep learning from you and keep fighting and loving my girl.

  21. Again, thank you!!! As much as each of our children on the spectrum is different, we parents are so much the same in our feelings, hopes, fears, and dreams for our children. We have been on our journey with our son’s autism for 14 years or so, and as he approaches adulthood, our concerns are no less, as it still appears that his ability to function in society is limited. However, we will never stop advocating and working with him and his support team to achieve that of which he is capable. My greatest desire for him has always been happiness, and it is so often his expressions of that which seem to be the barrier between him and society. I truly wish that I had your ability to express myself, and I apologize for my ramblings, but I’ve been interrupted umpteen times while rambling!!! It’s taken probably 40 minutes to get this down!!! You are the inspiration and the solace I can count on daily! 🙂

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