Even Simple Can Be Difficult

[Ed. Note:  This is my first writing since May.  I know.  It’s been too long.  I know.  I’ve written something now.  So, that is that.  If you feel you can get over it, please read on. ~Thank you for your understanding.  It is much appreciated!!!  😉 ]

We’ve been on this autism journey for close to 4 years now.  (Even longer if you count the time before the diagnosis.)  You’d think, at least I think, that we would be better prepared for…you know, anything.  In our case, occasionally sometimes  often, there is not near enough of the preparation.  And it kicks me in the gut every time.

Lucy had a friend, Zach*, over and the kids were playing so well that he stayed for dinner.  On a whim…I know.  See?  There was my first mistake.  Anyway, moving along… On a whim, I thought it would be a nice treat to stop at a near-by sno-cone shack on our way back to Zach’s house.  It’s rare that we do these kinds of things and I really didn’t think about this as being anything other than a typical, fun summer experience.  (Mistake #2 for those who like to keep track.) In the car we told the kids where we were stopping and the news was, of course, well received.  We got our sno-cones with no fuss.  Even their choice of flavors were quickly decided upon.

Because my husband has issues with kids eating shaved ice, covered in sticky syrup, packed high above the rim of a styrofoam cup (or anything else remotely messy) in our van, we would eat outside.  The breeze was lovely enough that it was pleasant outside…if you were sitting still in some shade, eating a deliciously cold treat.  Which was my plan. (Mistake #3, thinking I actually had “a plan”.)

Due to Henry’s recent paralyzing fear of bugs (which seems to be getting progressively worse and which we’ve been battling all summer)  I did a quick scan of the surroundings to scout our options while we waited for our order.  There were only two other patrons sitting on their car on the opposite side of the lot.  I chose well, or so I thought, by picking an umbrella-covered table away from the others that wasn’t at all sticky.  No trash cans or potted, flowering plants were anywhere near-by.  It was actually located on the paved lot right next door to the sno-cone shack.  This meant we had to cross a very short, grassy incline.  Icy treats in hand, we headed that way.  Henry hit the brakes as soon as we got to the grass and refused to go further.  My heart began to sink.  I immediately got a bad feeling about where this was headed.

Grass equates to clover which means bees and other bugs.  I got Lucy and Zach settled at the table while BDC dealt with Henry.  After quite a bit of encouragement he made it to the table.  But he refused to sit.  Henry was in all-out panic-mode, searching the area for flying and crawling bugs.   He was continuously jumping and darting away from “bugs”.    No amount of reasoning or encouragement would stop his outbursts and crying about these perceived bugs.

Now, as someone who also hates bugs, especially when I’m eating, I can tell you that there really were no bugs!  There were none on the table or the on the ground around the table.  Only an occasional fly or dragon-fly-type bug would buzz past well away from us.  Even if you were paying attention, which I most certainly was, there would have seemed to have been no bugs at all.

As a full meltdown ensued, BDC offered to sit in the van with him but he would have to leave his sno-cone at the table.  Whether or not we made the right decision on that, I don’t know. (Probable mistake #4)  But, in this situation we stuck to our guns about not eating these drippy, messy things in the van.   Off they went, with Henry not only upset about the bugs but also having to leave his sno-cone behind.  Yet, he did.

I sat with Lucy and Zach as they enjoyed their sno-cones.  With a lump in my throat I watched Henry’s begin to melt.    I was struggling not to let tears well up in my eyes.  Even going for a summer treat just couldn’t be simple.  And most certainly it was not fun for the little dude.  When I couldn’t take it anymore I sent a text to Grant.

“Is he calm at all?  What do you want to do about his sno-cone?”

At this point, please know that my concern about the sno-cone was nothing to do about it going in the trash.  It was about my boy  missing out on something he loved and had earned.  That is what was breaking my heart.

After a minute or so, I saw the van doors open and I could hear Grant talking to Henry.  He was going to try again.  I know Henry wanted to enjoy his sno-cone,  just like any kid would.  But for him, right now, outside is just so very difficult.  Henry was relatively quiet (I use the word “quiet” loosely here) as he walked back to us but he was nowhere near calm.  At this point he was truly terrified of a bug getting on him or even near him.  I got him to sit next to me and he asked me to hug him and hold him tight.  I promised him I would not let any bug get on him and I would keep them all away.  He got through about 1/2 his dessert but just barely.  It was too much.  He was done and begged to go back to the car.  Grant went with him.  I sat for a few more minutes with Zach and Lucy while they finished up and we soon headed back to the car as well.

Henry was already so much more relaxed back in the van.  But that didn’t make me feel much better.  I question just about every decision we make when it comes to our kids, especially of course, when things don’t go well.   We try, very carefully, to calculate the situations or experiences  where we might want to “expand our Kansas”.   With Henry, we need to push (gently, carefully) to try more things, DO more, experience MORE.  Was it wrong to want to be able to sit outside with our sno-cones?  Should we have let Henry sit inside while the rest of us sat outside?  Should we even have attempted this at all just “on a whim”?   What was I thinking?!?  How could I not have seen the potential disaster in this?  On the other hand… it was just going for a damn sno-cone!

Clearly, this experience was DIFFICULT for Henry.  Painful, even.   Which, of course,  makes it painful for Grant and me.   We want to help him.  It frustrates us when we can’t and it’s maddening that the things we need to help him with seem so small, so simple at times.  And sometimes that can be difficult for me to accept.

*NOTE:  Zach’s family has become good friends of ours over the last year.  Zach has a twin brother with autism.  Through this whole ordeal, Zach went on as if nothing out of the ordinary was happening and continued to behave wonderfully!  We are grateful to have friends like Zach and his whole family!

Surfing Solo

This summer, due to many variables, we had a very difficult time trying to plan our family’s annual trek to visit relatives in the Michiana area. It seemed  we would have to scrap the trip completely this year.  There was just no way that Big Daddy Chameleon could take vacation during the ONLY weekend we had open to take our trip due to work commitments. We knew the kids would be very disappointed, especially Henry, who had been talking about going back to the beach (Lake Michigan) since our trip last summer!

Grant and I were pondering what we would tell the kids and we were dreading how Henry in particular might take this news. We were conversing on this matter via our cell phones as that it the only way we can have a real conversation without (much) interruption. We hung up still feeling bad about not taking the trip.

In a 30-second moment of insanity I called him right back, “What if I just took the kids?”

I was expecting him to say, “No. No. We go as a family or we stay home as a family. That would just be too much to ask of you.”

What he actually said was, “That’s a great idea! I was kind of thinking that same thing myself but I didn’t want to ask that of you.”

Uh, oh! Looks like I’d be surfing this trip solo.

Just before we left on our excursion I wrote this.

Fast forward a few days. The van was packed, DVD players ready to go, gas tank was full and the GPS was programmed. All kids are loaded up. I’m too focused to be nervous or worried. I just want to get there.  This is the first time I’m taking the all the kids anywhere beyond a 30 minute drive all by myself. I think Big Daddy Chameleon was more worried and upset than he was letting on.

We’re finally on the road. Everyone is plugged in to their own earphones. Henry and Lucy are watching their DVD’s in the middle seats and the teenagers are listening to their iPods in the very back. I’m driving solo with the passenger seat next to me empty. I love it! I feel almost giddy about doing this on my own! For over 2 hours it’s just me and MY choice of music and I am jammin’ out! Buena Vista Social Club, Little Feat…
Then the DVD’s end, we slow down to a crawl due to road construction, and someone needs a bathroom break. The reality of doing this trip by myself begins to set in. I delegate the teens to help keep an eye on the little ones when we find a place to stop and use the restrooms, re-set the DVD’s and get back on the road…which is STILL at barely a crawl. We snack, we drink. “How much longer?” and “Are we there yet?” begins.  But overall, I’m still feeling pretty good about how things are going.

Until GPS takes me off the highway and into downtown Indianapolis during rush hour. This is not the way I had expected as I had just assumed the GPS would take me around the city as we usually go. I continue to follow the GPS directions until she directs me to a street that is clearly blocked off and I would have to figure out my own way around.

I wasn’t panicked yet but I knew what was coming. Henry watches and listens to the GPS so he knows when I am clearly not following Karen’s directions. (Yes, my husband named our GPS Karen. He has a weird sense of humor sometimes.)  Anyway, hearing Karen say, “Recalculating.” and seeing that I am not following Karen’s pink line, throws Henry into a fit! When I continue to try to drive through downtown traffic and get us reoriented, it makes things worse and Henry moves into panicked meltdown mode. No amount of my reassurance or my overwhelming attempt at calm is doing any good. I call Grant on the cell to see if he is at all familiar with Indy. He is not. He also had expected the GPS to keep us on the interstate and around the city. Now I’ve succeeded in freaking him out as well.

“No worries.” I say brightly. “I’ll get us back on track here.” I hang up the cell phone while I’m silently cursing Karen.

We continue to weave our way through streets full of traffic. I call up one of the teens to come be my co-pilot until we can navigate our way back on the highway. Julie (Molly’s friend we have invited along in this adventure) volunteers and works her way up front. Just then I have to stop a bit short at a light and Julie trips over the snack basket and trash can smacking her head into the dashboard as her shoulder hits the stereo button on and music blares!
Now the real adventure begins! The waves are picking up…

Lucy is now reacting and comments and reprimands come from Molly in the back.  Henry’s meltdown increases so that he is yelling and screaming full volume and has unbuckled his seatbelt. I slow to another stop light and lose it. I yell. Suddenly and loudly.  I reach back to grab Henry to get him back into his seat. Except he is moving all around and I end up smacking him in the leg. Now he’s crying and hops back into the seat. The girls become silent.

A wave just crashed over my head and my surf board just flew out from beneath my feet. I’ve already lost my temper and we’re not even there yet!

I collect myself and breathe. The girls remain silent but Henry is screaming again. I do my best to ignore him and get us back on the correct highway. I call Grant to let him know we’ve righted ourselves. Henry is still melting down so I offer him my Nook. His meltdown immediately stops like a switch has been flipped…he’s quiet. For about 10 minutes.

The next 2 hours or so, the van is full of complaints, arguing, and whining. I remain calm and just keep driving. When I can’t take it anymore and Henry is climbing out of his seat again, I pull over to the side of the road. I keep  deep breathing, determined to stay on my board this time. I explain to Henry that when he is quiet and calm we will continue on but not until then. It took about 10 minutes. A LONG 10 minutes. He calms down and buckles up and we are back on the road.

The sky is clouding up and getting quite dark. It begins to rain.  My fuel light comes on. We’re all tired and hungry. I stop to get fuel. I underestimate just how far yet we have to go. We are almost 2 hours behind our scheduled time to arrive. I find out later than Grant has been calling his aunt to see if we’re there yet. In all the chaos I wasn’t hearing my cell phone and even if I had, I was too focused on the road to answer it.

Once we did arrive at our destination, it was all I could do not to start crying. I was so relieved! Grant’s relatives fed and watered us! The kids settled in. Immediately upon entering the front door all of the stress and crying and chaos melted away! They were so happy and excited to get the real part of the trip started!

It turned out to be one of our best visits ever. (Sorry, Grant!) We had wonderful weather and spent well over 5 hours at Lake Michigan the next day! That’s our longest stay at the beach to date. There were no more meltdowns, bickering, or whining. I was able to actually relax some!

Another day was spent hanging poolside and visiting with more relatives. It was just so NICE! AND the kids were having FUN!  I’ve never seen my son  so worn out. It was amazing! All of my husband’s family there are just incredible folks.

After just two full days of fun, it was already time for the long drive back home. This time I made sure I had directions to keep us on the interstate AROUND Indy. I also did a better job of prepping the boy for the long ride home, beginning with the fact that there would be a portion of the trip that we were NOT going to be listening to Karen but that it would be okay. Once we got around that part, I promised McDonald’s.

Packed up and back on the road we still had some restlessness. I get that and it was manageable! At one point, after hearing Karen GPS “recalculate” about a dozen times Henry pipes up, “Oh just shut it, Karen! Not you mom, GPS Karen.”

Perhaps I was feeling a bit too cocky about surfing solo… a few hours from home, I caught up with  Grant to give him an update. Of course he asked if things were going okay. I replied, “Ya know, the kids are doing much better this car ride home and they were excellent during our stay. So much so that I would consider doing this trip again sometime by myself with them.” Crap. Did I just say that? Out loud?

Crazy? Yep. And certainly not something I’d choose to do alone unless I absolutely had too, but it was an experience that unexpectedly boosted my confidence as a parent. I WAS a pretty good parent. I COULD handle it. I could surf these waves of the autism spectrum, and parenting for that matter, and do it solo. But next trip I am definitely hoping for tandem surfing!

Expanding Our Kansas: The Fish Fry Experiment

[Ed. Note: “Kansas” is a concept by Aaron Likens , a man living with Asperger’s Syndrome, that he explains as “when I was in an element that I loved I was much more functional and everything made more sense. From this I defined Kansas as ‘The activities, concepts, or interests that a person on the spectrum is supremely interested in.’ Most people on the spectrum have an area of defined interest and I define that as Kansas.”  He also used this as the title for his book Finding Kansas: Living and Decoding Asperger’s Syndrome.  Having had  wonderful opportunities to talk to Aaron on a couple of occasions and having heard him speak several times, our family has adopted this concept to also include any time or place or experience that our son, and our family, is most comfortable. Our “Kansas” is our comfort-zone.  And  we do know we eventually have to push beyond those borders in order to grow.]

It’s fish fry season. On any given Friday during Lent, at just about every Catholic Church in the metro area, you can find a fish fry. And take my word for it when I say the number of parishes in St. Louis and surrounding areas is staggering!

We don’t eat out with the kids. Ever. Unless you count McDonald’s as eating out, which I do not. This is just not a situation that we have been wanting work through right now. But we know we really need too. So, why not try a fish fry? It’s families.  It’s casual. Right?

We talk about where we’re going and a little bit about what to expect. I try explaining to Henry that it will be a little like eating in his school cafeteria. We have assured the kids that this fish fry also serves some pretty darn good cheese pizza and there just might be some yummy desserts to choose from if everyone eats their meal.

We arrive early at our destination to avoid the big dinner rush and head inside. Grant and I are leading the way with all three kids behind us. We scope out the lay of the land and see that Grandma has saved us spots at the end of a long table in case we need to make a quick exit, yet right near the big dessert table to perhaps provide some motivation if needed.  Perfect! As we head further in I notice that Lucy is right next to me but I don’t see Henry or Molly anywhere.

Slightly panicked I start scanning all around and finally head back through the doorway where we first came in to find Molly squatting down talking to Henry. He doesn’t want to go through the doorway to this new place. He put the brakes on immediately at the doorway and would not go a step farther. Molly is handling it beautifully and she gestures for me to step back while she talks with him. After a few minutes, Molly waves me back to where they are  and passes the baton to me where I immediately hand it off to Grant. After a few more minutes pass even Dad is unsuccessful in getting him to move father inside.

Grant and I exchange looks with our eyebrows raised, silently asking each other the question, “Should we cut bait?”

“Let me try.” I say.

So now Henry is really wanting to head outside but I encourage him to just look inside the cafeteria. I assure him that I will not make him go inside if he doesn’t want too.  Grandma comes over to see if she can entice him with  the promise of desserts  but he’s not ready to hear any part of that. He stands leaning on one foot, then the other, rocking slightly back and forth.  He is talking to himself quietly under his breath and occasionally lets out a yell to express his anxiety about this new place. We continue to talk quietly about what will happen inside and then suddenly he says, “OK!”

Just like that we get in line, order our food, get drinks and sit with Grandma to eat. Henry just had to process the whole situation. I was exhausted!

After finishing his entire pizza, Grandma offers to take him over to the dessert table. He takes his time looking over the many choices and when finally he makes his decision, Grandma hands him the money to pay.  Henry quickly devours his cake and asks if he can have another. After all his hard work to not only get himself in the door but then also sit well at our table and eat, I was not about to deny him. I get up to walk over with him.

“No, Mom. I can do it by myself.”

“Well, I’ll just walk with you.”

“No, Mom! I can do it myself! I want to do it myself!”

The experience of choosing something and then paying properly for it is another area that we have not really worked on.  With Grant sitting next to me telling me to let him go already, I hand Henry the exact change he needs and then held my breath never taking my eyes off him. I’ll admit here that the dessert table was maybe 10 feet from our table. It might as well have been 10 miles as far as I was concerned.

We watched him walk along the long table again browsing the possibilities.  Some boys were playing a video game nearby and we giggled as Henry got a bit distracted and went over to see which game they were playing. With only one simple verbal prompt from me, Henry was back checking out the desserts. I watched him make his selection and hand his money to the lady working the table.

Henry walked back to his seat so proudly!

“See? Did you see me do it all by myself?”

It was at this point I think I started breathing again. And tried to keep my tears of joy in check!

It was nearing time to go but Molly told us that she promised to take the kids to the playground after dinner so off they went.  Grant and I were enjoying our beer and some kid-free, adult conversation. We weren’t really paying attention to the time. We had been pushing it to begin with so we should have known better.

Sure enough, about 15-20 minutes later, here comes Molly practically carrying Henry back in to the cafeteria in complete meltdown with Lucy dutifully following. We had been there too long. I felt awful that one of us had not gone with them so Molly would not have to deal with that on her own. Again, she handled the situation very well. As best anyone could under the circumstances.

We scooped up our tribe and made a fast, albeit LOUD and embarrassing, exit.

Although the experience didn’t actually end well, I felt we took some big steps! We pushed the boundaries of our Kansas and had some huge successes! Experiencing public meltdowns (or the anticipation of the potential for one!) is definitely outside the borders of my own comfort-zone. I am learning that it is so important for ALL of our family to continue to expand our individual “Kansases”.  Although next time maybe we had better pick a different parish. Perhaps one in the actual state of Kansas.

The Longest Season

It’s been a long, difficult soccer season from the very beginning. You can read about our rough start here. This year our two littlest chameleons, Henry and Lucy, wanted to follow in our oldest chameleon, Molly’s, footsteps by playing soccer. They did a small instructional mini-camp in August which didn’t go so well either but with Henry seemingly doing well in mainstream Kindergarten, we figured now was as good as any to give it another try. In other words, Grant and I were ready to “rip it off like a band-aid” and get this first experience with a team sport over with. We are lucky to have an instructional league in our community just for their age group and they were able to play on the same team.

If you still haven’t read about that first practice yet, go ahead now. I’ll wait…

Okay, thanks….So from that first practice, things slowly did begin to improve, relatively speaking, of course. As Henry got more comfortable with how practices were run and what was expected of him, he was able to spend more time on the field with few and shorter breaks and hardly any more meltdowns. The weekly games, however, were another story. After working so hard at practice on sharing, turn-taking, following instructions and practicing the same drills and exercises over and over…well the actual games must have felt like complete and utter chaos with very different rules!  Certainly there is very little turn-taking at this age and NO personal space! At this pre-school/Kindergarten level soccer is affectionately known as “herd ball”.

 Twice a week was not only full of anxiety and dread on Henry’s part but for Grant and me as well. Would this week be any better? How long would he practice before he would need a break? Would Henry be able to participate in the weekly game at all?  How many times would we have to redirect or intervene and remove him from the field? Would Henry’s challenges detract from the other kids’ experience and enjoyment of the game? We wanted to be fair to the other kids and parents too!

 Because we could see he was improving, we continued to make him go to each practice and game. It may sound cruel to “force” him to participate in something he clearly did not like. But we felt that since Henry was the one to say he wanted to play soccer in the first place, we wanted him to learn that even though he might not like something, once you started it, you need to finish out that commitment. Now, of course had thing continued as horribly as the first one, we certainly would not have put him through that but thankfully they didn’t. Henry didn’t want to go to soccer after the first week or so but there were no more major meltdowns and he would always end up getting dressed and ready without too much of a big fight. He was learning about commitment and responsibility. (I hope!) You know, as much my 6 yr. old boy on the Spectrum can.

 I think once he started getting the concept of the game in general, his biggest frustration was not being able to score a goal. He couldn’t take the stress and anxiety of missing the goal or not even getting a chance to get his foot on the ball let alone try to score! It also didn’t help when he would only be on the field for a minute or so before he would run or stomp off crying or mad that he didn’t get the ball. Crowds and other people touching him is a BIG stressor. Now throw him onto a field with 15 other kids all chasing one ball….yikes!

Our coach was amazing! He was always so positive and encouraging with all of the kids! He was always fair and treated each kid with kindness and understanding and respect. The parents seemed not to notice or be upset with Henry’s sometimes explosive playing-style and no one ever complained or was negative about Henry’s constant trips on-and-off the field   several times, randomly throughout the game. (At least no one was outwardly negative toward us and I’ll certainly take that!) I was so glad this was an instructional league, with the emphasis on having fun and really just getting that first experience into the game of soccer! Lucy as always, just went with the flow and would continue on playing no matter what her brother was doing. As long as she got a turn as goalie, like her big sister, she was happy!

About mid-season, Henry began wanting to count down how many more practices and games until the end of the season. At this point, Grant and I were counting too! Somehow we all managed to make it through and our last game was this past Saturday. It was cold and windy and we were missing a few players. The games were running behind so we had to wait for our turn on the field. Henry was agitated and whining and complaining before the game even started. Oh, we so wanted to just get through this last game!

Finally the game began as usual, Henry still agitated but at least on the field and playing. Then, it happened. Henry somehow managed to get the ball somewhere around mid-field and took it all the way down to the goal. He kicked it right at their goalie (because that’s what they do) and it slipped past the kid and rolled into the net. I’ll be damned! My son scored a goal!!! Everyone was cheering and our coach gave me a thumbs-up as he was running down to that end of the field! (At this age, coaches are out there with the kids~thank goodness.)

The game went on and soon Henry had enough despite the excitement of his goal. It was always just too much. After that game, the kids each got a medal, a hotdog, and lemonade! Oh they were all so proud of their medals! We were glad it was over as was Henry. We made it through the season. The longest soccer season ever! But Henry did it and improved! Bonus! He is learning about knowing when he needs to take a break and how to do that appropriately. He is learning that it is okay to try new things and it is okay not too always like those new things, but sometimes we still have to do them.

The following day, there was an e-mail from the coach to all of the parents. When I read it, I got such a lump in my throat. I knew then that we did the right thing by keeping Henry on the team. We had the perfect coach for it too! Here is what he wrote:

“Dear All, What a great season we just finished!  I hope all the kids had as much fun as I did.  Everyone really progressed and had a good time.  All the players contributed to our team and I appreciate all the hard work they displayed at practice and during the games.  I do not mean to single out any players as every player helped out a lot during the games, but it sure was special to see Henry score a goal yesterday. I have the medals for the players that were not able to attend the last game and I will get them to you somehow.  We hope you have a safe and enjoyable Christmas season and happy New Year.  Take care and thanks for allowing me to coach your kids, Steve”

Um yeah, it WAS special! More than I can say! I was so touched that the coach saw that too!

For the rest of the weekend, Henry talked about scoring that goal.

“Did you see that?!?! Did you see?!?! No one stopped me and I kicked the ball and the goalie didn’t stop it!!! No one could stop me and I scored a goal! Molly is going to be so special proud of me!!!!”

Oh yeah, my dude, we are ALL special proud of you!

Soccer Practice Fail

Almost immediately I can see my little dude becoming overwhelmed. He paces in wide patterns and circles. He stands on the outermost edge of the group as he possibly can. He’s not looking at any one thing or person, almost manic, his eyes dart all around as his body keeps moving about. When encouraged to come closer to the group, to participate, his protests come in short, loud, outbursts and he moves even farther away. Yet, he won’t step back and take a few moments to calmly watch the group either. This suggestion also brings loud protests. As time goes on his distress worsens. Louder, longer outbursts and lashing out, kicking, spitting, flailing arms. Maya works to bring his focus in by giving him simple direction to follow. We continue to encourage, demonstrate, and coax him. Finally he actually participates for a few minutes. But so soon he is back to the previous behaviors. Every positive reinforcement we give only seems to agitate him more. What little ABA game I brought with me has disappeared. I am struggling to try to help my son. The behaviors escalate. My focus, my tunnel vision, narrows. I see only my little dude. I hear Maya talking and we all work together to bring him out of this meltdown. It takes 3 of us, Grant, Maya, and me, to coral him. I catch him by the arm when instinct and past training lock in and I wrap his arms up in a safety restraining hold that I learned back in college when I worked for the State Department of Mental Health. (At this point I cannot even think about how horrified I should be that I have to again resort to this hold on my own son.) He continues to kick and yell and try to wrench free. We move to the side of the field. I sit down with him, arms still wrapped up and Maya tries to still his jerking, kicking legs. He knows once I sit down with him in this hold things have gotten out of control and we are done.  I will absolutely not let go until he comes back completely from the depths of the meltdown.  We sit. And we wait.

In his protests he is able to verbalize that it’s too much. That it’s hard for him.  Yet, it is hard for him to remove himself from the situation, to sit back and watch. That is painful as well. I am helpless. Nothing seems to take away his panic, his hurt. We continue to sit. As he finally quiets and I calm as well, my heart aches and I cry silently inside, keeping my tears locked up. I have failed my son on this evening.  He continues to remain still and I feel his body start to relax. I ease my grip but keep my arms around him. He watches his team continue practice. He says he misses his dad who is down on the field, continuing to work with Lucy who is also on the team. Henry starts to talk, plainly and calmly. He is simply matter-of-fact. As if nothing distressful happened. He begins to smile and joke and tell funny stories. My heart fills with  joy and love that I have for my son. But the ache, it too has stayed with me for a week now…and  I wonder if  I will be able to handle things at another practice tonight. I am anxious and worried and sad. This failing is not of my son’s but of my own.

Processing the Twilight Zone (or Kindergarten IEP- Part II)

[Editor’s Note: An alternative, more appropriate title for this post really should be: An Annoying Mother Who Worries Too Much! ~Trust me, I know. I annoy myself!]

School is now officially out for the summer. It’s probably time I just push through this post and get it out there…before summer is over and we enter into a whole other mess of worries and anxieties and issues! This particular blog post has been sitting in my drafts for days and days now. I just haven’t been able to bring myself to fully think through and process the whole thing. I can’t seem to grasp (or don’t want to grasp) the thoughts swirling and spiraling in my head. I am not completely sure why but  my guess is because just thinking about it raises my anxiety. If I think about it too much doubt, worries, fears about whether or not we made the right decisions creep in.  Worrying and second-guessing come naturally to me so I like to avoid and “stuff” all things which I don’t want to deal with…like then maybe it won’t happen. Denial…I could not possibly be sending my son to all-day, mainstream Kindergarten in August where he will ride the bus, eat lunch and be in a class of TWENTY other children with ONE teacher! All. by. himself!

So if you remember, a few weeks back we had Henry’s big Kindergarten Transition IEP. In case you missed it you can read the prequel here. Since that time I have been slowly trying process what transpired. 14 or so individuals (not counting Grant and myself) sitting around two big library tables pulled together was a little intimidating. And when it came to discussions about data and percentages of pull-out versus push-in and weekly minutes in the triple digits….well, my brain shut that part out for fear of vertigo and vomiting. (Some day I hope to write more about my newly self-diagnosed dyscalculia~it has a name!) Anyway, if you asked me now, I would not be able to tell you exactly what even came out of that IEP…that’s how badly I block data and numbers. (Scarier still is that I do the banking and bill paying for our family!)

Anyway, what I do know is that he is roughly getting only about 20% special education help; mostly in language and social/emotional areas. This is good. Right? I think?  Occupational therapy is basically being reduced to only a consultative basis, which is reasonable at this point.

Overall I came away from that (2-hour!) meeting feeling pretty good. Still nervous and anxious about Henry starting mainstream Kindergarten but it wasn’t so horrible. I still  had an appetite afterwards. Not feeling nauseous after an IEP is a good sign for me so the fact that my husband and I enjoyed a very nice lunch afterward was a positive.

What my brain keeps circling back too, and I have said as much to his beloved SSD teacher, is that my little dude looks pretty darn good on paper. Everything we talked about and decided on in the IEP makes sense and seemed reasonable at the time.

But now…the more think about it, what my son is on paper is not what he always is in the classroom and out in real life. And what triggers his autistic traits to come out are generally what are found in the mainstream school setting; the hum of voices in a confined area, many things going on at one time in this setting, many people/classmates moving around him…that buzz or hum causes him to shut down, act out, become noncompliant, meltdown. We have yet to see any real success in this area without one-on-one help. Now I am wondering if I stressed this very real trigger enough to our new team. There was no talk of a para for him. I do remember questioning this at one point where I was “assured” that they would have resources to pull in someone for him if needed.

I have enrolled Henry in a mainstream summer camp starting next week where he will go two half-days a week with his younger sister, in hopes of introducing him to a more mainstream setting. He will also still get two half-days of SSD summer school.

I know I have to let go. I have to raise the bar for my little dude, nudge him. But his anxieties and meltdowns are so painful to watch. I feel them along with him. He generally doesn’t even want to talk about Kindergarten! I anticipate a shaky start, some bumps in the road but I have to believe we will get through it and he will succeed; surpassing my expectations as he is known to do.

For now, I am going to try to take one small step at a time. Henry and I will take these steps together…anxiety and all! We will see how the mainstream camp goes. We will talk about Kindergarten; like it or not. I don’t let him see my anxiety. I don’t let most people see it. Ever. But it is there still just the same as it is in my little dude.

Now I await the letter that will come in the next few weeks telling us who his new Kindergarten teacher will be. And then I will probably worry some more! I haven’t even begun to address my little dude’s social/emotional issues! In between all this worrying I hope to actually enjoy some of this summer…Get ready for us Mrs. Kindergarten Teacher!

Alvin, Simon, or Theodore?

Yesterday the first half of my day was spend down in my office working. Yes, working on a Sunday of a holiday weekend. No, I am not a workaholic. The truth is I can be a procrastinator and then must pay a price…

Grant and the kids had been in and out upstairs working and playing in the yard. Mainly it was Henry coming in and out as he either gets bored and/or something of the outside has gotten too close to him. Now, as active as Henry is and as much as he loves to be outside, any  contact with nature, even remotely, that is not of his choosing, will send him scurrying inside. (The emergence of the 13 year cicadas this spring has been somewhat of an ordeal!)

So yesterday morning as I was working I heard Henry coming in through the garage to our bedroom. Grant called down to let me know that Henry was back inside which put him on my watch. Grant was heading to the hardware store with Lucy. Henry was staying home with me. It is rare for Henry to choose being with me over his dad so I figured he had had enough of the practically deafening hum of the cicadas or one had flown too close or something and he was not going back outside, even for a ride with his dad! 

It hadn’t been a minute and suddenly Henry was screaming upstairs! I jumped up and bounded up the stairs. My immediate thought was that he had just realized his dad and Lucy were leaving and either they hadn’t done the “good-bye ritual” or he had changed his mind and wanted to go along. Either of these two things will have him darting outside toward the car even if sometimes the car is already moving! As I hit the top of the stairs Grant was coming from the garage where he had just buckled Lucy into the van. Henry was on our bed screaming still. It took several second of getting Henry to calm down enough to decifer what he was trying to tell us.

He had heard a strange noise; a scratching across the bedroom floor. He wouldn’t get off the bed. He is screaming and crying and truly panicked! This is when Grant told me it wasn’t the cicadas that sent Henry inside but a chipmunk that had run across our driveway.

We were thinking that he had heard Grant out in the garage moving something  and since he had just seen the chipmunk he made an association and freaked.  I picked Henry up and carried him from our bed to the kitchen all the while he was just beside himself! In an effort to prove to him that all was okay and nothing was in the bedroom Grant was making a good show of checking our room…until I heard Grant with a sharp, “OH!”

Grant stuck his head in the kitchen to let us know that there was, in fact, a chipmunk in our room! I jumped up on the kitchen bench where Henry was standing! Henry started crying again.

“See! I told you I heard something!”

“Yep, dude, you were right! Daddy will get him, won’t you, daddy?”  I said in a perfectly calm voice. The look in my eyes saying, You WILL get that rodent OUT of our bedroom NOW!

Now Grant looked slightly freaked as he was trying to figure out how he was actually going to shoo this thing OUT! I stayed in the kitchen trying to calm Henry down as he was still in a panicked meltdown and Lucy was calmly waiting all buckled up in the van. Thankfully, Grant was able to get it out fairly quickly…don’t ask me how because I stayed firmly put in the kitchen with Henry!

We finally got Henry calmed down enough that it was safe for him to get down from the bench but now he didn’t want to stay home either. I don’t blame him as I was a bit creeped out as well. Ewwww!  So, off Henry went with Grant and Lucy to the hardware store after all. As much as I enjoy watching chipmunks on TV or out in our yard even, INSIDE our house is a different story and I’m pretty certain this one didn’t even have a record contract or movie deal!

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!