Our journey in the Autism Spectrum

Posts tagged ‘friends’

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?”


“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!

A Very Special Kindergarten Story

[Ed. Note: for the record I am getting this out there before my son begins first grade. I’ve been trying to find a way to do this book, this teacher, and my son’s peers justice. It was an amazing year!]

My son entered Kindergarten this past fall. Mainstream Kindergarten. After a few bumps along the way, my son’s extraordinary teacher gave me a wonderful opportunity to talk to the class about autism and specifically, Henry. In my opinion it was a great success.

If you haven’t read about my experiences, I’ve posted links here (otherwise feel free to skip ahead to the link of my video at the end of this post):

Bullying and Peer Education

Teaching Moment #1: Friends and Brains

Teaching Moment #2: Toasters and Hairdryers

Teaching Moment #3: The Senses and What Autism Looks Like

After my last “class”, Mrs. Kindergarten Teacher and the whole class shared a very special gift with me that I will never forget. With some help from Mrs. KT, they wrote a story with illustrations about Henry and autism. The words and illustrations are theirs. Henry’s own words and descriptions about himself are his as well.

The photos added at the end are a few I had taken throughout the year. (please note that I do not own the rights to the music used).

Thank you, Mrs. KT and your Lions! ~from the very bottom of my heart!

And finally….

A Very Special Kindergarten Story

Versatile Blogger Award: Who? ME?!?!

Versatile Blogger Award
Many thanks to aka Super Mommy for nominating me for this prestigious award! (Hey, it is prestigious! Alright? Yeah, that’s right!) And now it is my turn to nominate other bloggers that inspire me to be a better blogger, a better mom and a better friend! Thanks for letting me feel like a part of your lives! I feel so less alone because of all of you!!! ❤
Also, for the record, aka Super Mommy named A LOT of those already that I would also have listed here so if you are not on my list but were nominated by her, please know that I feel the same way about you too!
So, without further ado (in no particular order!) here are some of my favorites:
7 Things You May Not Know About Me:
1) I read very fast.
2) I was a Greek in college. (ZTA)
3) I love things in miniature.
4) I avoid feeding my kids peanut butter when they are sick because I cannot stand the smell when they throw it back up.
5) I always have a fear of my house smelling bad. (not because of #4, but all odors!)
6) As a kid I was a competitive swimmer.
7) I’ve wanted a tattoo since I was 16 yrs old. (still haven’t gotten one but I think I might be getting closer…)
The Versatile Blogger Award is for bringing bloggers together and sharing quality blogs with our readers and passing the award on to one another.
If you are nominated, please:
 Nominate (15) fellow bloggers for The Versatile Blogger Award.
  1. In the same post, add The Versatile Blogger Award.
  2. In the same post, thank the blogger that nominated you in a post with a link back to their blog.
  3. In the same post, share 7 completely different random pieces of information about yourself.
  4. Inform each nominated blogger of their nomination by posting a comment on each of their blogs.

~ Thanks again, Cassie and all of my blogger friends! You have no idea how much better you all make me feel! ❤ 

Teaching Moment: #1 Friends and Brains

I’ve written both here and on my Facebook page about how Henry’s Kindergarten teacher asked me to come into the classroom to talk to the kids a little bit about autism. Yesterday afternoon I had my first visit.

All the children were on the rug and I explained to them that I was there to talk about autism. I asked if anyone had heard that word before and if they knew what it was. I got some “yes” and some “no”.  I asked if anyone had a question before I read a book to them about autism.

My son’s hand shot up.  In my head I’m thinking, “really, dude?

“Yes, Henry. What is your question?”

“I hate G*!”

Of all the kids to be outspoken about not liking kids with differences, it’s MY kid, you know, the one WITH autism, that probably needs the most help in understanding the feelings of others. Which is exactly why we thought it important to have him there in class for my visits. Clearly, we’ve got a lot of work to do with my son. Henry’s teacher quickly diffused the situation by explaining that it is not okay to say things like that and that those words hurt. We then segued into explaining that the story I was going to share not only was about autism but about having a friend that was different.

With 17 pairs of 5 and 6 year-old eyes upon me I began by reading the book, My Friend Has Autism by Amanda Tourville.

Mrs. KT (Kindergarten Teacher) then did an exercise with them demonstrating how sometimes we liked the same things and sometimes we didn’t and that it is okay but we still need to treat each other nicely.

She began by asking a series of questions asking and motioning to the kids to either side of the rug depending on their answers. The questions got harder as she went on but here are just a sample:

“Who likes pizza best stand on this side of the rug and those who like hot dogs best stand on this other side.”

“Who likes to give and get big hugs stand here and those who don’t like to be touched stand over here.”

“Those who like to have a lot of friends come to this sides and those who prefer to have just a few friends go to this other side.”

“Those who think that we should   treat everyone nicely no matter our differences stand on this side of the rug. Those who think it’s okay not to be nice to someone because they are different stand on this other side.”

Importantly, on this last question all of the kids were standing on the “right” side! We talk about how it is important to be kind to one another even if we don’t agree with them or want to be their friend. We don’t have to be friends with everyone but we do need to be kind to everyone.

Next we moved on to talk about how different our brains are. How what we see in our brains can be very different from each other. Then the kids made “brain hats”. Each student was given a sheet of paper with an outline of a brain and they were asked to color in and draw on what they saw inside their brain. Then we attached their picture to a paper band that fit around their head to complete the “hat”.

With that it was time for me to go but Mrs. KT told the class that I would be coming back again to talk more about autism.

Some asked, “Tomorrow?”

Mrs. KT and I laughed and said, “No, not tomorrow but soon.”

[I haven’t yet had a chance to speak with Mrs. KT to get her feedback on the lesson and we haven’t set a date yet for me to come back.  Personally, I think I should have been able to do much better.  I just don’t feel I can relate to kids all that well, especially those that are not my own. They intimidate the heck out of me. But, since Mrs. KT did tell them I would be coming back I guess I did well enough. I’d give myself a C. Usually the more I DO something, the better I get. I’m hoping that is the case here because I’ve been given a WONDERFUL opportunity here and I sure do want to make the most of it!]

Playdate In An Alternate Reality

[Note from the Editor (that’s me, by the way) : This began as a status post for my Facebook page, A Chameleon in the Spectrum, but as I typed, it just felt too…BIG. This particular playdate also marked the one year anniversary of our first playdate together with these friends since meeting at TouchPoint one year ago this month!]

Yesterday we had a playdate with my friend, Kara, and her daughter, Ellie. A playdate consisting of our two kids with ASD (my son and my friend’s daughter) and my very “spirited” NT daughter, that lasted ALL DAY! 10:30am to 3pm!

My son, Henry, was in a house with a CAT.  Sometimes even in the same ROOM with the cat!

The kids played…in a different room from us Moms…without prompting…TOGETHER!

We made dough ornaments together. My son PARTICIPATED in the whole darn project from beginning to END.

We went to lunch while the ornaments baked. (Yes, we left the oven on while we were out…and this is only one reason I love Kara.) We ate INSIDE at McDonald’s. The kids sat at one booth while Kara and I sat in a SEPARATE booth right next to them. PEACEFULLY. And the kids actually ATE their lunches.

We returned to Kara’s after lunch just in time to take the dough ornaments out of the oven.  The kids PLAYED TOGETHER AGAIN while the dough cooled. My friend and I sat on her couch…looking at each other…talking…without interuption…without a kid in the room.

The kids decorated their ornaments with NO arguments about whose was who’s and NO ONE wanted the SAME marker or paint at the SAME time. Lucy and Ellie didn’t even really get into their latest “thing” of one-upping each other.

Henry was ASKING “Ellie’s Mom” questions. Talking TOO her. (sure, it was sometimes ramblings about dinosaurs…but, Kara’s the PERFECT person to “get” it and so it was AWESOME!

Kara and I pushed our luck by chatting about just how darn amazing every moment of this day was and just how far we had come in a year. I’m pretty sure both of us held back tears on more than a few occasions as the day progressed.

The whole day almost didn’t feel REAL. It was truly like when we stepped into our friends’ home we stepped into another world. A different reality. An alternate reality where Autism took a backseat to “normal”…yes, the Autism was still there…in any reality I’ve come to accept that it will ALWAYS be there. But in yesterday’s reality it was SURREAL. AMAZING. WONDERFUL. And HOPEFUL.

~Thank you, Kara, Ben, and Ellie, for being our friends and accepting us as we are. We can no longer imagine ANY reality without you guys in it! We are truly grateful for your special friendship!~ with much love (and alcohol) from the whole Rabinowitz Tribe ❤

Fewer Words Wednesday: Thank You from Team Chameleon

It’s been long overdue! Shamefully overdue! I am just still amazed and overwhelmed by the generosity of friends and family and strangers, too, that contributed our team’s successful walk for Autism Speaks this past October! To those of you who donated funds and/or time, to those that helped sell bracelets and t-shirts, and to all of those buyers out there, to those that walked with us and those of you who were with us in spirit~ We are deeply grateful! Thank you so very much! It was a most beautiful day!

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.

Because of My Mother

Because of my mother I cannot remember a time when I did not want to become a mother myself. And now I have been blessed three times.

Because of my mother I know just how strong women can be and I am stronger for it.

Because of my mother I have learned that mothers are not always perfect and that is okay. Some imperfections are what make a perfect mom.

Because of my mother I learned to take responsibility for my actions as well as the consequences that follow.

Because of my mother I learned how to make pie shells from scratch.

Because of my mother I was given wonderful opportunities to learn from my grandmothers. She allowed them to help shape me too.

Because of my mother I was able to learn and be shaped by her wonderful group of friends~ incredible mothers themselves~who I consider my friends now too.

Because of my mother I know that mothers can also be friends. I hope that someday my own children will consider me their friend as well as their mother.

Because my mother and grandmother I have finally learned that it is true that how a man treats his mother, that is how they will treat you. (And because of that I have the most wonderful husband and a wise and amazing mother-in-law!)

Because of my mother I know to embrace and learn from my mother-in-law and know that she is my own mother now too.

Because of my mother I know how important grandmothers are in our lives and the lives of my children. We are blessed by this.

Because of my mother I learned to always keep learning.

Because of my mother I am who I am; some parts of me like her and some parts of my like my dad.

Because of my mother I learned that I am 100% ME. And that is good.

Because of my mother I want to continue to try to be a better mother to my own children.

Because of my mother I am embracing other wonderful mothers out there, seeking their friendship, their wisdom.

Because of my mother I know it is okay to let these other wonderful people into my childrens lives so that they may learn from them.

Because of my mother the list of things I have learned and that I am ever so grateful for could continue to go on and on…

Because of my mother I know how much I have yet to learn. I know she will continue to teach me.

~Thank you Mom for ALL you have done for me and for all that you continue to do! Thank you for surrounding me with so many different  strong and intelligent mothers and letting me learn from them too. This in itself has shown me the strength and confidence and wisdom of your character. You allowed me to have many Moms in my life. But you, YOU ARE MY MOTHER and I love you with all my heart. Always.

A Post That Isn’t Really a Post (Plans That Weren’t Really Plans)

We had plans for this weekend. Plans to be determined as we went along at whatever pace we chose. Our littlest chameleons were sent to the grandparents for the weekend and the teen chameleon left with us to be set on semi-auto-pilot.  Grant and I can move forward with or without her and quite frankly, she would rather spend time with her friends or in her room than do whatever we’re doing. (Unless food or shopping is involved and then she’s interested!) Fine.

We started  out as “planned but not really planned”.  Our leisurely afternoon and evening following  the big IEP meeting yesterday was lovely! (Still processing the IEP~ more on that to follow in a future post that will actually be a post!) Beautiful weather, a delicious lunch that involved wine and lobster (Lobster Carbonara to be exact because they took my favorite Lobster Ravioli off the menu! A crime!), nice quiet ride home for a bit more wine and relaxing on our deck.

We have a lot of chores that need to be done and we had “planned” to get to them. But we left the plan of actual execution of these chores open to mood and interpretation. Easy breezy. So far so good. We slept in today. Until 8AM. That’s insane crazy talk around here! NEVER happens. More quiet and coffee in bed and catching up on our sci-fi shows. Heaven!

And then when Grant could no longer contain his ADHD he was up and out in the garage doing what is truly relaxing for him. Cleaning and organizing. This was to give me some time to have more coffee, sit, relax, possibly write some, do a little organizing on my own, catch up on the laundry, etc. Again, easy-breezy.

But while I was checking my Facebook I came across a wall post from a friend who is having a gathering today at their home. Affectionately now known as “Club M”.  Though we were invited weeks ago, Grant and I felt that we just could not add one more “planned” activity to this weekend and we had guiltily declined. These types of weekends are so very rare for us! Plans that don’t have plans! Now one of the “M’s” in “Club M”  was posting me wanting to know if we were coming as apparently their teen nephew and our teen daughter have been texting, giving them the impression that we were indeed coming. Guilt. We want to see our friends too as the opportunity for Grant and I to hang-out with this group is also very rare. These are some of our oldest and truly dearest bunch of friends!

Fast forward in time in this blog post that is not really a blog post to NOW…the need, to connect with friends has overcome my need for a weekend of getting chores done and having some truly leisurely writing time. Quick conversations between Grant and the teen and myself have now been for making plans. We’re heading to Club M later this afternoon. We’ve decided. Now we must pick up the pace. How do we fit in what we have actually not “planned” to do but MUST get done and what we had actually planned to do. Follow me? Because at this point I am barely following myself.

What I do know is that as the timer has started ticking, the blog post(s) I had planned to post this weekend are not going to happen. Well, probably won’t. Yet, I was able to at least blog this. The post that’s not really the post I had planned to post. The timer is still ticking….I need to pick up my speed. We should know that plans for no “plans” are not our style. (As much as we sometimes wish they were!). Nope. This is not how the Rabinowitz’s roll and why we pretend otherwise is beyond me! I like and NEED a plan. It’s how I’m wired.

So for now I am off to try and get at least a small fraction of what I had not really “planned” to get done, done. So we can squeeze in a late lunch with the teen that we really did have PLANNED and still get out to see friends that we had NOT PLANNED at all! Oy vey! With this fast change in “plans” I have no plan in place for what needs to get done….which now includes ending this blog post that is not really a post….no thought or plan for an ending…I’m caught in a loop…I apologize and I must just “not plan” to stop here….though I do plan to post more….possibly on other stuff sometime soon….

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.

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