You Can't Beat the Logic...

While trick or treating, WINK looked up at my husband and I and asked, "Why do we say 'Trick or Treat'? People just give us candy so... where's the trick in that?"

Halloween Success!

SMILE is wearing his bat costume and has already posed for several very sinister and spooky "swooping down" pictures.  The costume is actually a bit too small (the size listed on the costume is 7-9 so I was shocked) and my initial reaction was mild panic as I pulled the jumper over his shoulders and saw the length of the pants creep up from his ankles to mid calf.  But SMILE loved it that way.  Of course he did!  It's comfy and confining for him.  Thank God it worked out that way. If the costume had been roomy, the way I had intended, he might have not put it on.  So, my little bat flew into his class, picking little wedgies as he ran, and I couldn't be prouder!

WINK is coming home for lunch today to change into his costume.  He'll be dressed as a Noble Knight today.  Very fitting, indeed.

My Little Fireman

SMILE went to the fire station today with his class. I was a chaperon, of course, because I anticipated a break down of some sort (I mean...there are SIRENS!!!).  But SMILE was awesome! There was a tense moment while we were riding in the fire truck, sirens blaring, when he looked like he had sucked on a lemon. But he quickly adapted and was unshakable after that.  He listened patiently to demonstrations, allowed himself to be hooked up to a heart monitor by an EMT, held the water hose, tried on the Fire Chief's coat.  I was so proud. But the cutest part was seeing him run around with the flimsy plastic fireman helmet he wore, of course, over his hood.  Hey, whatever works.

Approach with Caution?

 I was on the play-yard at my sons' school the other day.  SMILE and I were running late and WINK was due out of class any minute. In my rush, I forgot SMILE's lunchbox in the car.  A third of the way down the path, SMILE looked up and stated, "Oh...umm Mommy, you forgot my lunchbox."  He was calm, even giggled (as if to say, "oh, you silly silly mommy"), and I thought all would be well.  But, well, it wasn't.  Sure, I wanted to just turn around and get the lunchbox but we were running late and we had to get to "our spot" in the yard for pick-up before the students were dismissed.

As WINK ran out, I thought I was in the clear.  I turned to my shrieking SMILE and cheerily urged him on back to the car, back to his lunchbox, back to his snack. He sobbed more. "Not to the car!  I can't go back," he wailed. "You go get it, Mommy.  PLEASE!"

I just stared at him for a moment, my hand resting on his shoulder, and let the problem sink in.  He didn't care that he could still have his snack in the car, as he usually did.  He needed to walk with the lunchbox because that had, evidently, become a ritual for him.  I ran through my options. I looked toward the parking lot. No, since the parking lot was at the end of a trail, my car was way too far away for me to leave my boys unattended. Not to mention the very real possibility that, had I left, SMILE would have misinterpreted my absence and thought he was "lost" or that I had "forgotten" him.  I tried reasoning with him, calmly talking between shrieks.  He started pulling and pushing me. WINK kept asking what was wrong with SMILE. I told him I accidentally changed his routine and he's having a hard time right now.  I could pick him up.  No, he's too heavy.  I could pull, drag, yell.  No, absolutely not.  I scanned the yard. No one I knew by name (new school) and no one made eye contact. 

It took me twenty minutes to get SMILE out of the main yard.  I finally got him to a point (inch by inch) on the path where he could see some yellow posts on the edge of the parking lot.  I figured if I could get him to those, I could run to the car, grab the lunchbox, bring it back to him, and all would be well.  I proposed the option to the tear-streaked little face that was looking up to me (begging me, I know, to figure this out).  He said "yes" and the tears instantly stopped.  I left my boys by the posts, sprinted to my car, and was back in under a minute.   And all was well. SMILE laughed the entire time he ran through the (by then) vacant parking lot.

But...here's what I don't understand. SMILE wears a bright blue parka when it rains.  He spins. He covers his ears. It's pretty obvious that there's something going on with the little man.  Even if people don't think or know I am (he is) dealing with autism, it's clear that he's having an irrationally big reaction to something small. Why didn't anyone approach us?  I'm not taking it personally.  Really. I truly think that people probably felt helpless and didn't know what to do. But I'm just wondering why people feel embarrassed to offer help.  I have been in the position of the observer before and I know I've felt that way.  So, I've done nothing.

But not anymore.

a Halloween blessing

WINK was asking if we had more Halloween decorations to use around the house (inspired, I'm sure, by a weekend at his grandma's totally spooked out house).  DAD told him we have a little model house that glows that we could put on top of our entertainment center. "But," he added "...it's really not a Halloween decoration.  It's more an autumn decoration.  WINK then said, "That's okay because Fall is like God celebrating Halloween."

A bad night with WINK

We are several steps behind in developing a treatment plan for WINK. The process is tedious and long and it just can't all happen quickly enough for me.  His social progress- or lack of- makes me frantic to find help.  He was diagnosed with Aspergers and OCD by the same institution that is currently providing behavioral services for SMILE. The BSC process has begun but progress is slow, unfortunately.

Last night was bad for WINK and I. He had a homework assignment in which he needed to pick 5 words from a list of 12 and write about a given topic (in this case, it was rescuing an animal).  I hate this assignment and dread it every week because WINK can't do this simple step without analyzing his options for a staggering length of time. Now, if he were laid back about it and had too many ideas to choose from THAT HE ARTICULATED, I think I would be able to let him go. But, WINK shuts down like a little computer with too much input and conveys nothing but anxiety. So, week after week, I break down the assignment and we manage through it.  But last night, WINK had PT after school and he took at least an hour to complete math work before starting the spelling homework (my mistake #1). So, he was already tired by the time he started and I was already frustrated because it was getting late and we had a multi-step, cannot ever be altered, routine for bedtime still looming.  So, I told him to just pick ANY words from the list.  He sat.

"WINK, seriously, ANY five words." (Mistake #2) I didn't make it into a game like I usually do. I wanted to skip that and just get it done.

"But I don't know what to pick."

After the third repetition of the above lines, his little lip was quivering and I made a real effort to remove any frustration from my voice.

"I know you're freaked out, WINK. But, honey, just pick any five words and I will sit here with you and we will think about sentences together.  I know you are worrying about step #2 but you haven't done step #1 yet.  Don't worry." HE picked 4.  It took 20 minutes but, great.  Just one more.  And he COULDN'T do it! 

And then, I blew up. I grabbed the paper and circled a 5th word. WINK cried because my sudden movement and my anger scared him, but also because I marked up his paper. Thankfully, a phone call from my best friend came in and I was able to go upstairs while WINK's dad took over.

This friend has stood by my side for 20 years and she knows me better than anyone. A friend like this is rare and I pray every day that WINK finds a friend like her.  If I had been talking to anyone else, I the conversation would have stayed focused on my frustration. But because it was her, I went right to my disappointment with myself. "Of course, it was a human reaction," I remember saying, "but I don't get to indulge in that. I don't have the right to blow up at him because it hurts him so much more than it should." And that's another serious weight of having special needs kids.

But...the rewards of being an ASD mom do outweigh the strain.  After hanging up, I ran downstairs and hugged WINK.  He crawled into my lap and I kissed his hair and cheek between apologizing.  I told him I was wrong for yelling. I don't have the right to lose it like that.  I asked him if that was "cool or uncool" (which is a game played at his social skills group).  He said "uncool" with his thumbs down.  I promised I would try really hard to be "cool" (thumbs up) more often.  He said, "It's okay.  I forgive you...maybe." Then he disolved into gasping laughter as I pretend screeched, "What!" and attacked him with rib tickles.

And I woke up this morning intent on being a more "cool" mom for my boys because they're worth it.  

   

BSC, TSS, IEP...BYOB

Smile and I went to the park with his TSS (therapeutic staff support) and BSC (Behavioral Specialist Consultant- I THINK.  This is the one acronym I can't wrap my mind around). My adorable, angel-faced, cutie has been showing his surly side with pride lately.  He is very controlling and rigid in his expectations and it is sometimes impossible to interact with him without triggering a break down.  Today was such a day and it started before we even got into the car.  First, he yelled because we were going to a particular park that I mentioned by name.  So, I quickly amended it and told him we were going to the park "by our house" (same park, by the way).  Then he yelled at his TSS and BSC because he wanted to play with a silly spring toy and didn't want to get his coat on.  So, I took the toy away and told him he needed to get his coat, sock, and shoes on. Once he did that, I promised, he could have his toy back. More high pitched screaming.  He got his coat on but yelled at his TSS.  I told him if he wanted to go to the park, he needed to say "sorry."  He said "no."  I counted.  He screamed because I counted but he DID apologize.  Then he asked for the toy.  Sobbing and pleading ensued when I reminded him that our deal was that he needed to get his coat, socks, and shoes on.   Somehow, I managed to stay calm throughout the entire ordeal and we were off.

At the park, SMILE ran around, laughing and cheery.  I settled down on a bench to watch the scene unfold. I love the fall.  The cool weather, the colorful leaves, and the sounds of my son being a typical kid.  But then...his TSS suggested they play "Red Light Green Light" and SMILE started barking orders ("You go there.  No! There.  And you? You go there.  No, no, no!")  The BSC took over and told SMILE to stand by his TSS. He did.  But then he realized that he wasn't going to be "the light" calling out the commands.  More crying, more screaming.

A wonderful friend trekked out with her son so that SMILE's team could see him interact= or not interact- with a child he's known for four years.  But they actually played very well together.  That's typical for SMILE. He's social if he's given a lot of prompts and the game is structured and simple (too complex and his rigidity takes over).  Two hours later, we packed our gang up and returned home.  I set an agenda for SMILE (home to check on our dog, back in the car, pick up WINK, go to PT).  All was fine.  Until...I told him to leave his coat, socks, and shoes on. More screaming with some name calling ("You're cheating!).  Ten minutes later, he got out of the car and I managed to get him in the house by promising him chocolate milk and a treat. 

Frazzled, I said good-by to SMILE's team, put SMILE's socks and shoes back on (but he DID leave the coat on), and raced to WINK's school where we got there just in time to see him walk out of the building.      

Super cute!!

This is a day to celebrate!  SMILE went to school in pants that are NOT one of his four favorite pairs. He has sensory issues so his drawers of jeans and cargo pants have gone unopened since the summer (of course he ruled out pants with buttons and zippers AFTER we went school shopping).  But today, although he would not entertain buttons or zippers, he DID put on drawstring pants that were not sweats.  He did whine, he did say they were too soft (he means not soft enough), but when he saw the shirt they would be paired with, he said it was "super cute" and he wanted to be super cute.  SCORE!!!

Wow! Once again, I'm Humbled.

First of all, I want to say thank you to my friends who have either written comments, emails, or called just to send their love and support. You are appreciated more than you could know.

I observed SMILE in class today for a district wide activity during which families are free to see their little ones (because even when they are older, heck, they are still our little ones) in class.  So, I got all dressed up in hip jeans, a fitted jacket, and a sassy scarf...I even put on mascara.  I ran through the hall, paused just outside SMILE's classroom, straightened my jacket, and calmly walked in and perched on a chair that was meant for either 5 year-old children or dolls.  I nodded politely at fellow moms. We all pointed to our kids.

And there he was in all his hooded glory.  A quick note here:  SMILE loves hoods. I first realized that they calm him down in new or stressful situations last winter. I noted that  he participated in story times and sat more quietly if he wore a hood.  But he hasn't needed a hood in quite a while, so it was complete luck or divine intervention when I not only put him in a hooded sweatshirt but THE hooded sweatshirt.  My eyes stung with tears when I saw him and it was all I could do to not jump up and kiss his little apple cheeks completely off (Thank God SMILE loves hugs and still tolerates mushy kisses). I'm so proud of him. I was sitting next to a mom I've become friendly with. We've known each other for years, sort of, because her daughters and SMILE often went to the same story-times at a nearby Barnes and Nobles when they were still in Pre-K.  But now, we see each other every day at drop off and pick up and she laughs with me as SMILE runs up to the school door in his blue, floor-length parka (if it's raining) or stares off while I try to get his attention.  Today, I found out that she is studying to be an early childhood education teacher. Her students will be very lucky.

I took almost five pages of notes so I could pass on my observations to SMILE's TSS (therapeutic staff support).  SMILE has transition issues and he needs continual prompting to follow directions. For example, the teacher told the students, at the end of an art project, to put away their crayons, put their papers in their "mailboxes" across the room, and then go sit on the carpet for the next activity.   His classmates did as they were told, but SMILE sat at the table. It was just too much information and it needed to be doled out step by step as he was doing it. I know his teacher usually does exactly that but I did it today. Not surprisingly, when I didn't tell him the last step but, instead, asked him what the next step was, he said it and did it without any problem. That's common, as far as I understand, of children on the spectrum. They hear the steps but they can't deal with more than one step at a time.

But I noticed something about myself shortly after I returned home with SMILE and sat talking to his TSS. The reason I reported "my findings" is that I wanted to prove to her and myself that I'm a good mom. She humored me and listened but I had to control myself so I didn't hit her over the head with my notebook when she seemed unimpressed.  But why would she be impressed by my notes?  She already knows. I already know. I didn't need to scribble away like some sociologist. I didn't really learn anything new about my son. But I had to do it so his TSS would know that I'm smart and insightful and...that I didn't cause this to happen to my son.

So, I took my place on the couch and leafed through a magazine while a near-stranger played with my son . It's been about a month since SMILE'S TSS services started and I love his two TSS's and his BSC (the amount of acronyms is astounding!) but I struggle to not feel displaced in this process.  So, I usually cuddle my dog, who wants nothing more than  to bark at them and bite their ankles, because I can sympathize despite my gratitude. 

It's all a humbling experience.  It didn't help that WINK didn't bring his book report book home today. He didn't forget it.  He put it on his desk, opened his book bag, did some other "kid packing up things," and it was gone when he went for it.  I asked if he had told his teacher.  He said "no."  I asked "Why?"  He said he felt silly.  When I asked why, in the name of all that is good, he would feel silly asking the teacher for help if he can't find his book, he looked at me and said "because it's not like books can just walk away or disappear." 
I actually gawked. "But it didn't disappear, WINK. You couldn't find it so you needed help.  Maybe it fell on the floor?" He then went into a five minute dissertation about the exact positioning of the book and how it was impossible for the book to fall ("because gravity no longer applies?" I wanted to ask.  BUT I DIDN'T.). I asked if another student could have packed it in his book bag by accident.  He said that was not possible since all the students don't all take out the same books. SIGH! I asked if it was possible that someone could have POSSIBLY made a mistake. He said (and I quote), "Only if their eyes were tricking them." I gawked some more. But I really looked at his little face and saw that he's just as confused about this as I am and it broke my heart a bit. Finally, I mumbled something about putting a note for his teacher in his folder, started the car, and drove home. I made sure he got extra hugs once we got there, though.  We both needed them. 

My boys by any other name...

I've been trying to think of tag names for my boys so I don't have to use their real names. Finally, I think I've found my answer:  WINK and SMILE. Yes, like the song.  Years ago, my husband and I were given those nicknames by our college friends so it seems appropriate.  But it's even more fitting because my 7 year old's (WINK) defining feature is his beautiful big eyes.  My 5 year old gets out of trouble, and will one day make little girls swoon, with his SMILE.

My husband and I took the boys to a science fair today. WINK had been looking forward to it for weeks. There were a few breakdowns, but only a few.  SMILE cried because he didn't want to launch the rocket DAD made.  Then, later, he screamed in the hallway when DAD suggested going back to a room they had just left to retrieve something that had fallen off of a "bee hummer" one of the kids had made (a bee hummer is a contraption that buzzes when it is swung around by a string).

I wasn't there for the second tantrum, however.  I was flying solo at a birthday party for a dear friend's daughter. It was a little strange being the only adult without children but it was a necessary move on my part.  WINK would have most likely sobbed if forced to leave the science fair until the last atom had been counted (or something "science-y" like that) and SMILE, already tired from being at the fair, would have had a screaming tantrum the second he didn't win Hot Potato.  Or maybe the game would have been played slightly differently from how he is used to playing it and the whole thing would have been deemed "stupid".   My friends know WINK is a sweet little guy and they know, I hope, that they can't take it personally. But I still cringe. I know he can't help it, that the tantrums come from frustration due to his various  delays and, in many cases, fatigue (very much like a toddler's outbursts) but...still. There's no way to make a room of mostly 7 year old and younger kids understand such strange behavior.

So, I'm cautious. Maybe more than I need to be. After all, it's possible both of them wouldn't have "tantrumed" (verb)  at all. But I spend my days anticipating the next problem or obstacle for my boys and I think, this time, I made the right call.

 

Hello

I had never really considered blogging before now. Who would want to read about my laments, challenges, and concerns regarding my boys, both recently diagnosed with ASDs?  But then...I thought I would. I mean, if I weren't me and I needed something to laugh about, cry over, to help me see I wasn't alone.  Because this does feel lonely, even with a great circle of friends, if your kids are the only ones screaming, spinning, or flapping and you're the only mom obsessing over which pants your five year old will agree to wear.

Yep,as a mom of spectrum kids, I find myself  in sticky situations (a.k.a. "pickles"- both sour and sweet) all the time. Play dates can be gruesome, parents of "typical" children gawk in disbelief and fear, and everybody from cashiers to great uncles twice removed has an opinion that is only sometimes marginally helpful. I get yelled at, pushed, and hit by the very children I am trying to help, nurture, and soothe.  And although I know better, I sometimes feel like a failure.

But then, somewhere between PTO meetings and IEP reviews, after TSS time and physical therapy, something wonderful happens every day. Small things, tiny, really. The kind of stuff parents with typical kids take for granted. My 5-year old will accept a change in plans or tolerate a spot of bubble solution on his shirt.  My 7 year old will play with a classmate for a few minutes more than the week before or he'll apologize for something he said because he finally understands why it's rude. And for a moment, life is blessedly ordinary.  

But the truth is that it's not. It's extra-ordinary.  My boys smile every day despite knowing, deep down, they are different. And they fight against it in countless ways every day. So, I fight too. And in addition to feeling frustrated, tired, and overwhelmed, I'm proud and inspired... every day.