They Accepted

This last part of the school year has been a bit challenging for our little dude. We are getting some notes coming home in his daily binder; “rough day”, “agitated”, “did not want to work with classmates in group”, “impatient”, “not waiting his turn”, etc. It’s the end of the school year and Henry is having a hard time holding it together some days. This is not surprising to me for a kid with an autism diagnosis. We work daily in the area of his social/emotional challenges. Always. Still.

Last week I had gotten a note and a call from the principal’s office that Henry was bothering some girls on the playground and he reached out and grabbed one of them by the shirt. This week a note came home, “arguing today”. Henry doesn’t like to get into trouble. And he really doesn’t like to talk about it when he does get into it. You can almost see how physically painful it is for him to admit he is wrong or to apologize for something. We have been working VERY hard on how to handle this in an acceptable manner. He wants to play with the other kids sometimes but he just doesn’t know how. Nor does he get those social cues when the kids don’t want to play with him or play his way. Another not-so-surprising aspect of his autism diagnosis. This is his most challenging area for sure! I was wondering if this most recent note had something to do with the playground issue from last week. I worry a great deal about what these social challenges might mean for Henry as he grows up. For how long will these challenges be oh-so-challenging for him? Will he ever learn how to navigate these waters appropriately? Will the kids ever understand and accept him for who he is?

When I questioned Henry about who he was arguing with I got the typical first response I usually get from him, “I don’t want to talk about it!” He had just come home from school which is a rough time of day anyway. Fine. Let him decompress.

In continuing with our vigilance in using everything as a possible teachable moment, later that night before bed when all was quieting down, I asked him again who he was arguing with. “Mrs. Q.” (This is his SSD resource teacher that he adores so I was beginning to worry what this was all about.)

“Why were you arguing with Mrs. Q?”

“I don’t know, Mom. Sometimes it seems like I just can’t help it.”

Fair enough. Not that this is acceptable, mind you, but at least he was thinking about it and talking about it calmly with me.

“Well,” I said, “don’t you think you should apologize to Mrs. Q for your behavior?”

“Yeah.”

“Okay, good. So when do you see her next?”

“I see her every day, Mom.” he told me in his “duh!” tone.

“Okay, so the next time you are with her you should apologize and try to work harder at not arguing with her. Alright?”

“Yeah, okay.”

I didn’t say anymore about it after that until he got home from school the next day. “Hey, dude, did you talk with Mrs. Q?”

“Yes, and I said I was sorry and I will try to be better.” (I don’t know if he actually did apologize to her but for now I am giving him the benefit of the doubt.) I figured this was the end of it at this point and we let it go.

However, this morning while the little ones were eating breakfast and I was getting clothes ready for the day, Henry came to me and said, “Mom, you know how I told you I apologized to Mrs. Q?”

Uh oh…”Yes, I remember.”

“Weeeellllllllll, I also apologized to the girls I was bothering the other day.” And with a big grin on his face he said, “And they accepted!”

ummmm….wow! Now, I don’t know if there was any adult intervention or whether he did this on his own but still, big. huge. wow.

“Oh, dude! That is really great! I am so proud of you! Great job!” But, again, as we continually try to practice and remind and practice more, I couldn’t help adding, “So now that you said you were sorry for that, you will try hard and not bother them anymore, right?” While he is getting better at saying he is sorry, he still has a hard time stopping some of the behaviors.

“Right. But can I play with them?”

“Of course! But you need to asked them if you can play with them first. And if they say no, then you need to leave them alone, okay?”

“Yeah. But then can I still wave to them and say hi?”

Oh my sweet little dude! “Yes! That would be very nice of you!”

I realize that Henry’s classmates will never really understand how hard all of this social interaction is for him. But today, I feel we are one more step closer to acceptance!

Surf’s Up

[ Ed. Note: I originally wrote and published this post for Cheairs at Redefining Typical in May of this year. With this summer’s vacation coming up, that hopefully will include a trip to the beach, it has me thinking about “the surf”. Since the original publishing I have  found a couple of pictures from last year’s trip to the beach.]

My son was diagnosed with PDD-NOS and ADHD at the age of 4. This was a year and a half ago. I had  suspected something was different about my little dude since he was about 2 years old, but that didn’t make hearing the words from a medical professional  any easier. A part of me felt a moment of relief to finally have an explanation for all of the struggles we had been going through up to that time. A “yes!” moment.

Then suddenly I felt as if I couldn’t breathe. It was as if I had been yanked down under the water. It was real for me.  Something physical. It was as if I was suspended in the water just below the surface. I could see but everything looked like I was peering through murky water. I could hear what the pediatrician was saying to me but he was muffled somehow. From that moment I associated the Autism Spectrum as fluid, always moving, always changing and all around me. A watery, living thing, this Spectrum.

I remember having to concentrate to breathe and struggling to try to grasp what the doctor was saying to me.  My husband, Grant, was off  literally chasing our son through the medical building because Henry just could not take being cooped up in the exam room any longer. So I was left there to try to take it all in and remember so I could share with Grant later. Our doctor was giving me literature on Autism and ADHD, a brochure for a local autism service, a business card for an agency for O.T., speech, and sensory integration therapy. I remember talking briefly about ADHD medications and do we medicate or not medicate? He wanted us to make an appointment in a month without Henry so we could discuss how he’s doing and to talk more in-depth about medication options or the option of no medications. He wanted to talk to us without distractions. He had experienced parents like me before. He knew I was probably barely retaining a fourth of what he was really saying. I realized even then that this was the doctor for us! We adore him!

Now a year and a half  later, occupational therapy and sensory integration therapy, speech and language therapy, listening therapy, evaluations, more doctor appointments, IEP’s and ABA training; it’s all still around me. I am just off shore~drifting, suspended just beneath the surface. Some days the waters are clear and calm. The waves move me back and forth, up and down and sometimes I even get to the surface to catch my breath. But another giant wave will come that pushes me back further down or an undertow that pulls at me~ always still all around me. (Click here to read about The Undertow). Doubt and worry cloud the waters. How can I help my son to navigate these waters of the Spectrum when there are days I don’t even understand it. The meltdowns and anxiety for no apparent reason! The echolalia, scripting, jargoning! The need to control. absolutely. everything. around him. The deficits in his social and emotional areas! I WANT to understand. I TRY to understand. What is going on in my son’s head? It is a question that is with me every minute of every day. Perhaps only Neptune knows…

My son has a diagnosis ON the Autism Spectrum. But our entire family is immersed IN that Spectrum. It is all around us. The realization that we are never getting out can be overwhelming. Heart-breaking. But I think because my heart aches continually, it is in my nature to try an embrace it~ all of it. The good. The bad. And sometimes even the terribly ugly. To own it. To make this Spectrum ours. What choice do we have? Because the waves will continue to come…

“You can’t stop the waves but you can learn to surf.” ~ Jon Kabat-Zinn

The continual crash of the waves can be too much some days. On these days I am physically tired from it all. But again, what choice do I have but to reach for my board and try to learn to surf those waves of the Spectrum?  To own them. To make them ours. Surfs up, my little dude!

The Rabinowitz Bubble

Oh. Yeah. Autism. We have that here…I “forget” sometimes.

Maybe it’s because we’ve had some really great successes lately or maybe it’s because it’s a holiday and there are celebrations with fireworks and BBQ’s and carnival rides going on all over town; a blatant reminder of where we will NOT be. Perhaps it’s because our newest phase (and phrase) is “I’m scared”. Of everything. All the time. Probably it is all combined with the fact that Henry’s not sleeping at night which means Grant and I aren’t either. Whatever it is, I’m tired of it (literally). And bitter. And sad. I am sick of acknowledging and celebrating our many successes over the past several months only to get kicked in the gut with a reminder that autism is still around with meltdowns, inappropriate outbursts, echolalia, seemingly bizarre behaviors and sleepless nights.  Although it’s not like we can ever really “forget”…it’s some denial, wishful thinking, and hoping…and then there is the guilt for feeling all of the above.

I usually see the good things about autism. The amazing things about our son which are ALWAYS there too! His gift for building, his incredible imagination and way of seeing things around him! His sense of humor and clever mischievousness. His true intelligence! I wouldn’t want to change any of that.  EVER. Our son is perfect just the way he is…

I try to remind myself of how far we have come and our many successes, the great leaps Henry has made lately. These are great, positive things!!! His communication, dotted with insightful comments and thoughtful questions has really improved! His ability to handle visiting friends and family for HOURS is wonderful! Huge steps! This summer we have been able to get out more and more! We have adopted Aaron Likens’ phrase of “expanding our Kansas”. And we have had a lot of good times! But I notice, that the more Henry can handle these visits, the more we are able get out, “expand our Kansas” and hang out and visit with our “typical” friends and family, the more I am aware of how different Henry is; how different our family is. And then comes the gut-kick, that reminder, of how we are anything but typical. That all of these successes for us take so much damn work to get there… and a lot times doesn’t “stick” without a lot more work!

I guess that’s why I like our little Rabinowitz Family Bubble. Here, we are normal, typical, comfortable. Sure the sleep issues and outbursts and other assorted issues still occur but we can look at them as normal daily occurrences and just a part of our way of life. It’s okay. I can “forget” about the autism and comfortably think that EVERY family is like ours. Surely they must be. Right?

I don’t mean to imply that our “typical” friends aren’t wonderful and patient and accepting. They ARE and we are very lucky and truly grateful for these friends! But even as awesome as our “typical” friends are, there are moments, bits of awkwardness, where they just don’t always know how to talk to Henry or deal with his behaviors. I see this. I feel their awkwardness, their not understanding, and I then feel uncomfortable for them. I am embarrassed by Henry’s odd behaviors and inappropriate outbursts.

Now that being said, for our typical friends and family who read my blog, before you call us or email us…no, it is not YOU in particular that I am referring too! This is a generalized expression of our different experiences with our typical friends over time, here and there…so, please, no worries.  I am making no personal accusations or blaming or pointing fingers! It’s all good. It just is what it is. I don’t expect everyone to “get it”. God knows I don’t want everyone to “get it”. With 1 in 110 children born with autism, WAY TOO MANY families “get it” already!

Yeah. Autism. We have that here. We will always have that here. But today I don’t like it. I am not happy about it. I don’t want to even acknowledge it! Today I just want to stay isolated in our little bubble and pretend that we are normal. Typical. Just like everyone else. Another day, tomorrow probably, I will again be able to accept and even celebrate autism for what it is in our lives. Back to work. It will all be okay. But not today. Today I just don’t have the energy for it. Today working with autism hurts and I want to find comfort and respite in our bubble.

IEP’s and Rod Serling

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Kindergarten Transition IEP. These three words  have been ominously rattling, clanking, whispering and shouting in my brain for weeks like some surreal dream sequence from an old Twilight Zone episode. Curse you Rod Serling!

So much information, data and lingo is tossed around. So many people at this one….the outgoing team who we LOVE and our soon-to-be new team who we have never met! Teachers, coordinators, therapists, administrators! That in itself is enough to stir up nightmares!  An IEP meeting is truly a strange world in a Twilight Zone of its own.

The date has been looming and the waiting has been full of anxiety! I like a plan. I am not crazy about change and I don’t like surprises. (unless it’s a box with something expensive and sparkly inside or a winning lottery ticket!)  I just want this to be done and over. Yet…

Now that finally the day is almost here, 44 hours and 30 minutes to be exact as I type this line. I’m getting even more panicky. I am anxious about things going smoothly, of getting the services and support my son needs for the big jump into mainstream kindergarten. I want to start off at this new school with this new team on the right foot. That can make all of the difference!

Am I prepared? I should be but I certainly don’t feel like it. I am finding it so hard to prepare for the unknown! Thoughts and worries are swirling vortexes in my head. I have no idea how this new team executes an IEP meeting. I really don’t have any idea what to expect! What am I forgetting? Have I left something important out of my notes? Am I missing key issues that need to be addressed? Where are my notes? I still have to finish the collage of my son I am putting together for the new team. I feel such pressure to find just the right photos so they can really SEE my little dude. So they can see how smart and funny and GOOD he is. It is so important that they can see his potential so as to help him to realize it.

I have less than 2 days to get focused, get over my anxiety and get on with it. It will be what it will be. For now, my eye is on the short-term prize of just making it through the meeting and then off lunch at a nice restaurant for my favorite lobster ravioli and a glass of wine (or two!) with my husband! By this point I have to think that all will have gone well and we will have navigated through the Twilight Zone. And we are not inviting Mr. Serling to lunch with us!

Coping…??? Not so much.

As I begin to type this, it is just minutes before 6:00am CST. I have now been up since around 3:30am. Henry woke up with a dream. He didn’t say it was a bad dream, he just wanted me to lay with him for while. Hard to resist when he just wants some quiet snuggle time. At 4am I crawled back into my own bed but could not get back to sleep.

My mind was racing all over the place. And then suddenly my stomach seemed to leap up into my throat. I forgot to pay our Discover bill! Damn! I glanced over at my clock which was  glaring red. 4:32am. Double damn! My alarm was set to go off in about 15 minutes anyway so I hauled myself out of bed and down to my office cursing myself all the way. I quick threw some money at the credit card bill via online bill pay as if that would make it all go away. I was dreading having to tell Grant that our bill was going to be late. He probably wouldn’t be up for at least another hour. I spent the next hour or so feverishly working to clean up my office space, get bills in order, and organize our donation lists (with pictures) for itemization for future income tax returns. As if this would help erase or make up for the late bill. In case you are not up to speed on the whole spring cleaning/donation fiasco you can catch up here and here.

Grant knows I haven’t been coping well. I can’t seem to get anything done or keep track of anything. I am overwhelmed by the little things so then too the bigger things are doubly overwhelming. I am forgetting things. Losing things. Often.  Last night Grant watched me tear through one of my cabinets looking for a lid to a container all the while ranting to myself about how “the lids always disappear!” and “where the heck can they possibly go? Who uses a lid without the container? What would you use just the lid for?” I was feeling a bit crazed and this missing lid was about to push me over the edge. Just as I was about to search for another container with its lid, I saw the missing lid sitting on the counter, where I had put it while I was filling its partner. Oh.

Grant: “Babe, are you okay?”

This was just one of my many questionable “episodes” as of late.

Me: “No. Not really. No.”

He looked as if he was trying to absorb and process my response and just ended up looking at me helplessly.

I remember an e-mail I received some months back from my friend, *Hermione*, in response to one of my blog posts. I laughed at her perception the first time I read it and certainly it gives me a good chuckle right now.  Hermione has a daughter *Rose* who is just 6 months older than my oldest daughter, Molly. We have commiserated over the years through the pre-tween, tween, and now teen years.

From Hermione: I have been reading your blog…. You are quite articulate.  You describe so well the mixed emotions…. Happy to have a diagnosis that will give Henry the assistance he requires but all the scary negative emotions of the diagnosis, which is still hard to hear, even though you said you knew it was coming…

 Anyway, you sound amazingly skilled at handling all this. *Ron*  and I are barely able to cope with a “normal” teen…. Thinking of you and Grant and Henry and sending positive energy your way.

Articulate? Amazingly skilled? Are you kidding me? Upon my first reading her e-mail, I was immediately questioning that she even was reading MY blog!

She goes on to tell me what she’s been up too; working, reading, quilting (or rather, her not quilting),  and how she and Ron are constantly at odds with Rose, how Rose wants her room painted black and Hermione’s attempts to make is less black by trying to compromise.

“…. So although she may view it as “goth/modern”, I suspect everyone else will view it as old-fashioned and Amish.”

Quick side note: We too have compromised on the black in Molly’s bedroom. She got new black curtains and some new black decor to accent her already purple and lavender walls and bedding.

Hermione tells me of  her and Ron’s trials and trauma and drama with Rose and it all sounds familiar…except in our case, Molly wants to do everything and be brilliant at it with no effort or practice and then complains about it.

“[Rose] wants to quit piano…. At which point she will be doing nothing. Nothing at all, except texting and watching Anime and doing homework. No sports, no interests, no extracurriculars, no hobbies,  nothing at all. Except homework and being nasty to her parents. Ron comes home and goes into our room and hides. Comes out for dinner and goes back in again. And then Rose is crushed he doesn’t pay attention, but when he does, she is so often nasty…. He over-reacts and she needs to be kinder. It is all driving me crazy. Both of them. And then the dog got sick….. but nothing to complain about, really. How you do it is beyond me and you have my highest regard….Hermione.

 Did I mention that the *Weasleys* are big Harry Potter fans? Anyway, here was my response back:

 Here is my secret to coping (if you can even call it that): Alcohol, Hermione. Alcohol. That and making friends with Zoloft.

 Keep in mind that sounding skilled and actually having the skills are very, very different things! We get by. We laugh, albeit sometimes quite maniacally, to avoid crying. Molly is at odds with Grant constantly. The ONLY reason she and I are not at the same odds quite as often is I just tune it out. When I just can’t take one more snide remark or sneer from her I just shut down and leave the room. I try my best to avoid any kind of raised voice at all. This is not my strong suit but practice is forcing me to get better at it.  

We also have been trying to apply ABA strategies that we learned at TouchPoint for Henry to all three kids. That is becoming easier too. It’s not usually very fun but at least the verbage is getting easier for us. Yelling just fuels Molly’s fire. I now try to state what is expected of her and remind her of whatever the consequences may be and then I walk away. She has been known to follow me around the house for HOURS whining and complaining, yelling, screaming, slamming things, getting in my face….and I just keep walking away, avoiding eye contact, every so often repeating the expectations and the potential consequences. I pretend to read or surf the internet. I pretend I am playing a part and there is an important critic in the audience so I’d better make this performance good! (I have a friend who does the same to win an Oscar~ for myself, I just want to get out of summer stock). I don’t let Molly see me cry.

 I have not read anything in forever. I have at least 5-6 books sitting on the shelf waiting to be read. My escapes right now are Facebook and blogging and Black Phoenix Alchemy Lab scents. I am pretty sure that I am going through a midlife crisis and my alter-ego is trying to keep me busy. She has her own Facebook page. She wears glasses. She is supposed to be working on writing a book. Lots of half-ideas….nothing formulated enough to actually write down. So, we blog. Everything is a potential blog post. Nothing is sacred. hmmmmm……yep, don’t be surprised if you see this reconstituted as a blog post at some point in the future.

 I don’t see that as coping at all. I see that as a crazed, under medicated manic/depressive hanging on by a thread and shutting down and escaping whenever possible. And for the record, my oldest is not always that bad all the time. She is an awesome kid….but you know, she is still a typical, hormonal 13-year-old! So, I concluded with:

So, see, I really am not handling this teen stuff or autism stuff very well at all. I suspect really most parents don’t, Hermione. We just do what we have to do to survive it. We will survive it! Hang in there! You know where I live and how to get in touch with me if you need to! I am out here in the muck too! ~Karen

I do realize that I have a pretty sweet gig here and certainly there are MANY parents out there going through much worse, much rougher times. I get that and I am ever so thankful for my family, my job and our life.  But there are moments, lots of them lately, where I just can’t seem to get a handle on things…so much feels out of my control. I feel lost. My husband always knows how to “find” me and anchor me. But he is tired too. I ask so much of him.

So, flash forward to now…this afternoon… I’m tired, anxious, and have LOADS of things I need to do. And I am still not getting any one thing done. The little ones are “playing” by destroying the basement family room. Laundry did get started but just that, started. At some point I am going to have to do some work that I actually get paid for… I guess I will try to squeeze that in sometime after I hard-boil about 2 dozen eggs for the family fun night of egg dying and decorating.

Oh, yeah, and that late Discover Card bill? I was so freaked out about it and worried we would lose our low APR, and Grant was too, that he called the company. Turns out I had paid that bill early sometime late last month. So, we weren’t late at all…

Oh yeah, and now I guess I CAN mark one thing off my list as complete! Blog post. Done! Now, where did I leave that laundry basket…?

The Undertow

I like routine. Even if it is the routine of the ebb and flow, the highs and lows, of being immersed in the autism spectrum. I can deal with those waves that produce somewhat of a rhythmic rocking as we float along. The gentle ups of good, easy days along with the downs of harder, more challenging days. It’s all okay. Easy-breezy. We will deal with things and move on as the Spectrum lifts us up and pushes us down throughout our lives. 

But the Spectrum has a fierce undertow. At least my Spectrum does. And sometimes that undertow suddenly reaches up its watery arm and grabs me and yanks me down.

This morning began as an average day for us. Everyone is going about their daily morning business. The usual ebb and flow. The little ones are ready for breakfast and happily come to the kitchen. Lucy is getting her own yogurt and Henry is moving randomly about the kitchen as I get plates and cups out. (This is an “up” wave) Then, what goes up must come down. So I begin my short little dance with Henry to not only get his attention but then to get him to tell me what he wants for breakfast and then have him show me he is ready for breakfast by sitting in his chair. (this little dance is a “down” wave. But just a little ebb. One that is routine for the day).  And these little waves are how we move through our day in just about everything we do. It’s all fine. We are managing.

Later in the morning all continues to go well at our usual pace until…we were in our family room. The little ones were playing happily and I was actually getting some work done at my desk in my office area which opens up into the TV and play area. Henry came to the middle of the room. He looked scared. Tears were welling up in his eyes. I glanced at him over my shoulder from my desk and I could clearly see he was getting upset but trying to fight it. I did a quick assessment of the moments just beforehand. I had not heard any loud noises, no screaming or squeals, or fights over a toy. What the heck happened? And this is where the undertow of the Spectrum pulls me down to its disturbing depths.

“Henry, what’s wrong?”

“Mom, I broke it! I can’t help it! I can’t control my brain. It’s hurting my brain!”  He is crying now and I can hear the anxiety in his voice and almost FEEL it in him as I pull him close while he is physically pressing his hands to the side of his head. He cannot be consoled just yet. He continues to cry out about not being able to control his brain. I finally get him to calm down enough to understand that he broke the lid of the big plastic container we have that stores boxes of puzzles.

I have no idea how or why the lid got broken. All I can think about is how disturbing Henry’s words are. “I can’t control my brain.” “It’s hurting my brain.” He continues to press his hands into his head and lean into me. Hard. I have my arms around him tightly hoping that the pressure will help him.  I am so panicked by his words that I struggle to focus on calming things to say to him. I can’t imagine what he is seeing in his mind at that moment that it is hurting him so.

“It’s okay.” I tell him. “It’s just a lid. Now is the time to use your options map. Remember? Take some deep breaths. Count. Can you tell me if you hurt. Does your head hurt? Do you have a headache, Henry?”

He starts to take a breath but then glances over at the broken lid and starts in about his brain being out of control again. And the crying begins again.

“Okay, Henry, what else does your options map say. Tell me what else you can do when you are upset.”

“Take a break.”

“Yes, Henry, good job!  Take a break!”

“But I can’t! I can’t! I broke the lid and my brain is out of control and I don’t understand! I don’t know!”

Oh God, my heart feels as if it is literally breaking at this point. There is physical pain in my chest and I am willing myself not to freak out over Henry’s words! Focus on the options map I am telling myself! Henry is clinging to me and crying still.

“Okay, Henry, let’s take a break, okay? The options map says we can walk away too. Let’s do that. Let’s walk away right now and go upstairs for a bit.” He literally wraps himself around me, legs and all, and I pick him (which is getting to be no small feat at 40 plus pounds of solid boy!). As we walk by Lucy, I see she is still playing with her Barbie’s and watching whatever is on TV (probably the Bubble Guppies, her new favorite show). I tell her we will be right back.

“Okay, momma.” At 4 years old, she gets it. She lives it. She doesn’t always like it but it seems she has resigned herself to it.

Upstairs Henry is calming down. We sit on my bed and I hold him. When I ask him if he can tell me what he sees in his brain that is hurting him, he still can’t tell me.  I hold him tight and we rock. I tell him that HE is in control of his brain. HE is the boss of his brain and HE tells IT what to do.

He is no longer crying but he keeps holding me tight and burying his head into my neck that is now wet with his tears. When I feel him loosen his grip I move so he has to look at me. (another difficult task!). But he does and I tell him again that he is in charge of his brain. And he controls his brain because he is smart and good and strong!

I don’t know how much of this he actually understood but he said he did and he was smiling at me. Then he started talking about blocks and train tracks and save for the one last tear that was still on his cheek, all was forgotten. Just. Like. That. He was off back downstairs to resume his play.

Inside I am still screaming! What goes on in my son’s head?!?! Why can’t I understand?!?! Why can’t I stop whatever it is from hurting him?!?!

I forced myself to let go of the disturbed feelings I was having. We will deal with those another day. Take that Undertow of the Spectrum!  We have escaped your grasp once again and we swim up to the surface to BREATHE!

Our Funny Valentine

 

“C’mere, teddy bear.”

When my son says this to me I know he wants to cuddle and give me a hug. He leans toward my cheek and I am not sure if I am going to get a kiss or a raspberry; with either one we both giggle. Henry has an infectious smile and a twinkle in his eyes that only mean trouble!

He knows funny. He teases with the purpose of getting a laugh…or getting away with something. Sometimes it’s both.  Sometimes he tries to be sly about it, keeping a blank face, his mouth set in a straight line. But he just can’t control the tiny twitch that reveals his dimple and then he’ll grin and when he can’t hold that back he will give you a full, gorgeous smile.

Henry  tells us he loves us, spontaneously, not just as a rote response to us saying it first. But he didn’t for a long time. He couldn’t identify emotions in pictures and certainly not in others or in himself. He has always been one to cuddle but on his terms, of course. Expressing his experiences and emotions are  difficult concepts.

I wondered (and worried) whether the concept of feelings, emotions, would be something that Henry would ever understand. Sure, he was slowly learning the appropriate words. But would he, could he learn to really connect on the emotional level with others.

“I love you, Henry.”

“I love you, too.” No real inflection of tone, no sense of feeling behind his words. Just memorization. I learned to accept that and I would take those words into my heart and there I would place  feeling into them for him. For me.

Throughout our days I  try to show examples of happy faces and sad faces, angry faces, faces that are surprised.  I point out these emotions  in his favorite TV shows or movie, on my face, on his sister’s face. I  try to get him to copy my expression. I encourage him to point to a happy face or sad face.

I have been met with a blank expression. Many more times Henry would just walk away or start talking about something else.  There was no interested or even a hint of comprehension of anything outside of himself.

And then one day we were coming home from school and from the back seat I hear Henry say to Lucy, “How was your day, Lucy?” I held my breath wondering if he would just continue to talk through it about whatever he was seeing in his mind but there was quiet. He was waiting for Lucy to answer!

Soon after that, one evening Lucy was crying about something at bedtime and Henry jumped out of his bed to give her a toy. Suddenly he was dancing around making silly faces.  He was trying to cheer her up! Is it possible that he was slowly “getting it”?

Another evening, big sister Molly was in tears over some homework. Her voice was raising in frustration and Henry asked,”Molly, what’s wrong? Why are you sad?”

Molly being too upset to talk, I answered for her, “Molly is sad because she is frustrated about her homework.”

Henry turned back to Molly and said, “Molly you should check your options map.” And then he proceeded to list all of the “green-light” options for what you can do when you are mad or frustrated or upset. And still then continued on to SHOW her how to take deep breaths and count! (Score a perfect 10  for ABA!) He was making the connection between feelings and actions.

Some may say that Henry is just learning to memorize the correct response and not really feeling what he is saying.  I think that is part of learning about emotions.  He is learning to put words with feelings  AND feeling into his words. When he spontaneously smiles at me and says, “I love you, Mom.” His tone changes. I no longer have to put my own feelings onto his words.  He is doing that all on his own! We are having to prompt him less and less about saying thank you when he receives a gift and when he does say “thank you” there is a tone of sincerity.

Henry does have feelings and he is beginning to understand those feelings. I don’t wonder about him getting this concept any longer. He sometimes has trouble expressing them but I do believe this will come in time. You can see he is trying. He will learn to do this in his  own funny, quirky way which may be very different from most of us but I think that is okay. That’s how he rolls.

It may seem funny or odd to have to practice emotions and appropriate emotional responses. For us, our daily lives are filled with practice. Everything is practice.  Feelings and emotions are such difficult concepts for most people on the spectrum. Deficits in this particular area is one of the criteria for being on the autism spectrum to begin with!  So, we’ll just keep practicing.

Last night as Grant and I were tucking the two little ones in their beds I heard Henry say to Grant, “Happy Valentine’s day, Dad.”

“Happy Valentine’s Day, Henry. I love you.”

“I love you too, Dad. Now you have to tell mommy happy Valentine’s day and give her a hug.”

Grant responded as I watched from Lucy’s bed and wondered how this was going to play out. “Okay, I will”. Grant turned to say goodnight to Lucy and Henry said, “No, now Dad. You have to tell her now and give her a hug and kiss.” He was watching us for practice I guess? Silly little dude.

So, Grant and I turned toward each other and wished each other a happy Valentine’s day. We said “I love you” to each other as we hugged.

“Uh, Dad, you gotta give her a kiss, too!” So we kissed. Both kids were giggling and we proceeded to switch sides of the room so Grant was saying goodnight to Lucy and I went to say goodnight to Henry. He threw his arms around my neck and said,” Happy Valentine’s Day, Mom.”

“Happy Valentine’s Day, little dude. You are our funny Valentine and we love you.”

“I love you too, Mom.”

There is no better Valentine’s gift than that!

I see. I know.

I saw myself today in another mother’s eyes. For a moment I could not breathe. The pain and hurt welled up in my chest and throat.   I saw tears in her eyes as she watched her daughter play; the love and joy and pride so fierce! Yet also seeing the agony of knowing just how painful it is for her precious little girl to be so close to other children, taking turns in a game no less! And at the same time exhilaration that her daughter was DOING IT!  I was overwhelmed! We watched our kids play together, my son, her daughter, along with another beautiful girl. They PLAYED! I wanted to yell out my excitement!  YES! I contained myself somehow. We were watching them behind a two-way mirror. We could see them in a play room with two ABA trainers “playing” with them but they could not see us, watching them, cheering them on silently in our hearts. We were encouraging of each other as parents. Some kind of bond, a knowing, an understanding on a completely different level was there.

I wonder what other parents would make of this scene. Parents with typical kids. Would it even look like playing to those parents. Each child needed different reminders or prompts for what was expected next in this time of “forced” socialization. The little girl sitting next to my son could barely look at anything but the floor but when prompted she looked at my son and said, “Your turn.” and my son looked back at her, if only for a second. But they LOOKED at each other! Another silent cheer from us!

I wanted to tell this other mother, “I see! I know! It is okay! It will be okay!” How can I begin to tell her that I feel the pain, the fear, the pride and the love all at once, too? For the last year I have felt so alone. I know no one personally who has a child on the autism spectrum let alone someone who lives very near us with a child the same age! I saw in her eyes what runs through my heart every day! Can others see this in my eyes too? If so, no one has admitted it to me. Is it only us parents with children on the spectrum that can see it?

For the first time  I felt  less alone when I saw myself in that other mother’s eyes. Does she see it in me too? Because I know, she knows! The raw emotion bubbles so near the surface. I could use a friend that gets it! I hope she does see because then maybe she can understand just how good she made me feel not to feel so alone.