Wednesday, May 16, 2012

Not Entirely Fond of Puzzles

This journey…this intro to life with a child on “the spectrum” has been challenging to say the least.  We have so many devastating moments that are balanced by those of complete and utter joy…of hope.   Just when I think we are on the right path of diagnosis, Ben has a few hours of complete normalcy that lead me to believe maybe we’ve been too hasty here.  Maybe I have more control over this than I originally thought.  If I just take him out for frozen yogurt more often.  If I spend more one-on-one time with him.  If I work with him more.  Yes…maybe that’s the key!


That’s not as easy as it sounds.  Ben has two siblings, you see.  Libby is my strong, expressive, exuberant 10 year old and Timmy is my comedic, quiet, yet charming 8 year old.  I came to the harsh realization this week that they get little to no credit or notoriety where this journey is concerned.  I haven’t discussed their role or impact much at all with you.  Truth is, they’re quite embedded.  And affected.  And tender.  And hurt.  As mature as their sweet little hearts can be most days…when it comes right down to it, they are two children who want attention from their parents.  Hoping to maintain our admiration, approval, love, hugs, focus.   And I won’t lie.  I’m failing…miserably.   Horribly.

To them, life is black and white.  Every poor behavior should lead to a consequence.  At least a consequence that makes sense to them.  As we move through these steps in diagnosing Ben, requesting an assessment for an IEP through school, making accommodations at home with special toys…I realize it makes very little sense to them.  Black and white.  Our punishments for Ben have changed.  Ben is getting attention and things.  And they…are not.  I won’t pull any punches, these “things” we’re buying for Ben are by no means inexpensive.  Non-slip socks are $5 a pair…social storybooks are $25…beanbag chairs are $80…weighted blankets are $150 minimum.  It adds up and FAST.   So it’s quite difficult to balance this material love among all three children.

My older two children have always been wise beyond their years which unfortunately for them lead me to assume they would understand the one-sided-ness of all of this.  That they would be on our side.  Cheering us along in making our household a little more harmonious where Ben’s anxiety is concerned.   I couldn’t be more presumptuous.  And for them, I’m learning, this is not simply a matter of “he gets something so why can’t I??”  It’s the inner battle of their conscience.   You see they are brilliant babies.  Despite their child-like instinct of sibling rivalry, they DO know this is a special circumstance and they should try to be more understanding.  

The other day, my order for Ben’s beanbag chair arrived.  When I picked the kids up from school I excitedly exclaimed to Ben that it would be there waiting for him.  As we walked in the house, Timmy curiously examined the chair…and I could see in his eyes that he wanted one too.  I quickly reassured that I would soon get one for him and Libby too…but because of the expense I wanted to buy one at a time.  He smiled his sweet understanding smile and left the room.   He returned about 30 minutes later to inquire about dinner and as he turned to leave my office he said “so…you said I’ll get one too someday, right??”  I gathered him to my arms and advised that I would of course get one for him too, again explaining that it was easier for us to buy one at time.  Then…he gave me that smile inevitably hiding a cry.   The one that cuts straight to my heart each and every time.  You see, this boy, this sweet angel of mine is the most tender of souls.  He wears his heart on his sleeve.  And just as quickly as he crammed his hands into his eyes, he turned on his heels and bolted upstairs.  My poor boy.  I did this to him.  Although my parents were never ones to run after me when I darted to my room in tears, I determined I always WOULD be.  So I did.  All the way up to the attic.  (And dear GOD I was out of breath!)  As I reached the last step I could see him crouched behind the rocking chair.  Face in his knees, arms around his legs, red cheeks, wet eyes.


I made him talk to me which is not an easy feat with him.  He is my little clam.  But he finally did.  Through his uncontrollable tears he vented his frustration about Ben…how he gets all of the attention…how he gets away with being inappropriate and rude….and how he’s getting special toys.  My instinct was to comfort him and reassure him that I love him equally.  That unfortunately my focus has been off-balance as of late.  But he surprised me.  His tears were not simply due to a disparity between siblings…but because he does in fact understand that Ben is dealing with some special circumstances and his own feelings of jealousy make him feel like a bad kid…like a mean brother…like a bratty son.  Oh this child.  All I could do was hold him in my arms.  As big as he is, it didn’t matter.  At that moment he was my little Timmy who is hurting and doesn’t know how to handle it.  I encouraged him to be open with me about his feelings.  To tell me when he feels as though things are unfair.  I told him it’s okay to feel that jealousy of a sibling once in awhile…it doesn’t make him a bratty kid.  In fact, I as a grown woman, struggle with those same feelings some days.  I hope I made him feel normal and justified and hopeful that momma will someday get better at this balancing act.  Lord, I’m trying. 

It occurred to me that maybe as an introspective kid, he may benefit from writing down his feelings on the matter.  To put his honest thoughts on paper, free from fear of hurting anyone’s feelings.  He declined.  He smiled.  He hugged me.  Kissed me.  And told me that he understood why things are different these days.  Then naturally asked what was for dinner.  I love that kid.  And that night I ordered him a bean bag chair too.

Libby on the other hand has just been burrowing through this mess.   She loses patience with Ben often, resulting in yelling matches that could scare a grown man.  She doesn’t take things lying down but doesn’t often express her feelings with me individually.  We have attempted a couple of family meetings.  We’ve taken them to Ben’s counseling sessions.  None of which yielded much discussion.  So…I extended the same offer to her.  To write down her feelings and frustrations.  And she took it…gladly.  She’s a writer, that girl.  She took her time and although she’s never read my blog, she knows it exists and asked if I could include her words in my next post.  How could I say “no” to that?  A girl expressing herself through writing??   Any.  Time.

Here goes:

Ok, so I’m the sister of Ben, and I was kinda confused with the whole subject on why and how this is happening. We have like family talks and stuff, but, I didn’t really think to much of it. That was until he started having his sessions. He got way more attention than me or my other brother. We were just like, what just happened? It’s like one minute you’re an only child, then you have a little brother. Two years later, here comes another! Can’t a girl have a break?
One night, the whole family was talking down in the living room and all of a sudden, Timmy, my other brother, just blurts out, “I don’t have enough attention”. I really don’t wanna sound like a brat here, but, ARE YOU KIDDING??? I’m the oldest, and I only had a year to myself, Timmy had at least two. Ever since then, they’ve been getting way more attention. Like today. They got their bing bag chairs first. I’m not complaining about something that small, but, to me, it always seems like him and Ben are always first. Especially Ben.

So I’ve talked to you about the bad side of having a little brother with ADHD and Aspergers. But, there are some good sides. Sometimes when he really just gets on my nerves, and I know I just can’t do anything about it, right when I get home, SMACK! He’s in trouble. I don’t wanna sound like my mom’s mean. She’s super and awesome and beautiful, but, sometimes, he just gets into some deep waters and needs my help to get him out, you know? Like the other day, my mom was getting frustrated with Ben because he has sock problems. So I offered to help. I like helping out and all, you know, our family and stuff. Ben really isn’t that bad. He’s pretty funny sometimes. Yeah, he can get on my nerves like any little kid would. I mean, he’s 6. Give the guy a break.

Wait…did she just say I was super?  And awesome?  And beautiful?  Ahhh…someone knew a little sugar in the mix would help the medicine go down.  She’s right.  This IS medicine.  For me.  I need to hear these things…unedited and raw.  Just as often as I find her to be impatient, she finds me just as ragged.  And poor girl, it’s NOT her job to filter my frustration and ease the blow for Ben.  But somehow she’s making that her responsibility.   So…I continue to seek resources and literature and advice.  How do we lift up the rest of the family and arm them with the tools to manage this emotionally charged situation?  So far, these kids aren’t entirely fond of this puzzle. 

So now…while we sit in a holding pattern on assessment and services…I will focus on this.  I have to do better.  I have to find a balance.    

Thursday, May 3, 2012

Sifting Through the Middle Pieces

“I’ll take a margarita. On the rocks. Make it STRONG.”

I could see in the young server’s eyes that he knew it had been one of those days…such that he should probably fetch my beverage quickly. And thankfully, he did. After a nice cold, salty swig I could finally feel my body resist the tension that had been holding me captive for days. I was lucky enough to get an evening out with a wonderful girlfriend for “’jitas and ‘ritas”…my favorite. It couldn’t have come on a better day.

The entire drive to the restaurant I mulled over the previous three day’s interaction with Ben’s teacher. I initially sent a request for more information on special services right after our last appointment with the psychiatrist but was advised the special education teacher for his school had just left the country and wouldn’t be back for two weeks. This was week two and I was feeling impatient. After sending a reminder email to his teacher I received the following in return:

Aspergers is so wide. Yes, I see tendencies that would fall into that…but it is hard to tell if it is that or ODD. I would like to share what I am seeing at school. I PROMISE you that I will send you another email tonight explaining in more detail some positives and areas of improvement.

I was confused.  But I waited. 

I couldn't stop the debate in my own head.  This is NOT Oppositional Defiance Disorder. Can't be. I stewed. And I cried. And I stewed some more. Just when I felt like we had our ducks in a row and everyone was on the same page, seeing the same things…ODD is thrown back in the ring. I thought we tossed that one out a long time ago.

Damn it.

Shortly thereafter his teacher shared her observations...

This is what I am seeing:
• Above grade level ability, but doesn’t always show it
• Prefers to do tasks independently (without partners)
• Hard time working and understanding peers
• Hard to get him to smile, show emotions
• Plays solo during most recess or side by side
• He lends towards one classmate
• Hard time understanding peers and reactions impulsive at times
• Relates to adults and interprets their humor

I suppose I struggled to find the “positives and areas of improvement”. I did see the above grade-level aptitude…which of course is fantastic. However, what my heart read was “your child spends most of his day alone.” “Your child has no friends.”

He’s alone. He plays by himself on the playground. He reads alone. He writes alone. None of which came as a surprise to me. Nothing I wasn’t already suspecting to find. But…do you ever really get used to reading those words? Truly. If any of you have gone through this, please tell me. Because so far I’ve not been able to merely imagine his reality at school without breaking into tears. When you send your child to school at this age you hope he’s enjoying himself. You picture him in a circle of friends giggling and playing on the playground. You imagine him munching among classmates, chattering about their favorite silly cartoon at the lunch table. I didn’t picture him sitting in silence at lunch. I didn’t picture him playing side by side with another child at recess but not engaging. I didn’t picture him spending his classroom stations and group learning time in anxious misery.

These were the images scrolling on repeat through my mind as I made my way to dinner that night. Whether his teacher realized it or not, she confirmed our thoughts and IS on the same page as us. Which is great. But I couldn’t help reflecting back on my recent post of the beautiful poem titled Welcome to Holland by Emily Perl Kingsley. My thoughts at that exact moment?

Screw Holland AND their wooden shoes.

If Holland means my son feels alone all damn day, I don’t want to be there. I don’t care HOW many tulips there are. For the life of me, I could not control the burning waterfall of emotion pouring through my eyes that day. One thought after another took me back to tears and quickly. Being able to sit and talk through this with my friend was such a blessing. She is a godparent to a boy who was diagnosed with Autism in early childhood. He was nonverbal and has gone through myriad therapies to be where he is right now. She was right there with him through it all. And it helped me to hear her talk about it. Her love of margaritas, listening ear, strong shoulder, and helpful advice guided me toward putting Ben’s struggle in perspective. I successfully made my way home that night without any additional tears. The next day we were to meet with Ben’s teacher and I was determined we would get somewhere for him.

The tension was palpable between the Gentleman and I as we waited outside of her classroom for her to wave us in. I could see it in her face. I knew what she was going to say. (She finally sees him.) My shoulders instantly exhaled. My ears were open. She went over the academics first…our son is in kindergarten, reading AND comprehending at an early 2nd grade level. Amazing. His math has improved exponentially. He’s certainly above grade-level in all academic fronts. I could feel the hesitation in her throat as she dropped her eyes and suggested his progress socially was not as remarkable. (Go on, sweetheart…it’s okay. We already know.) At this point, I almost felt bad for her. She had admittedly done some thinking, analyzing, researching in recent days and had concluded we were on the right path. It was as though it broke her heart to have to tell us what we suspected was going on in her classroom all along. It broke mine too. Again.

She hesitated to use the word…Asperger’s. She insinuated but could hardly get it out. I had to nod her along…and reassure her that the tears cascading down my face were not because my son may soon don a new label. I’ve come to terms with the fact that he’s likely on the” Spectrum”. (Our lovely new favorite household word.) Rather, I weep because we were right. Sometimes I wish we weren’t. Despite my frustration with previous suggestions of ODD, a small part of me wanted someone to say “this really is just ADHD/ODD and he’ll grow out of it”. If that were the case, he might struggle to sit still or focus on school work but he would eventually socialize and make friends. Right? No. Not right.

I’ve gone back and forth and back again. The last week or two has been an endless wave of laughs over tears. Smiles and heartache. THIS has been my roller coaster in recent days:

  • His ability/willingness to interact with classmates has declined significantly since the beginning of the year, leading to further isolation.
  • Many of the teachers check in on him through the day and love him dearly. They refer to him amongst themselves as their “little old man”.
  • He has increasing anxiety when being prompted to work with classmates on an assignment to the extent he melts down and can’t finish his work.
  • The teacher has already successfully introduced him to some sensory tools and toys when his triggers raise their ugly heads and allows him to walk the hallway when he knows he needs to separate.
  • Unfortunately we’re not going to get an assessment until September at the earliest.
  • We found some great items to alleviate his sensory issues: no-slip socks, a bean bag chair, and hopefully an affordable weighted blanket.
  • His siblings are struggling and understandably so. Classmates are approaching my daughter asking what is wrong with Ben, suggesting he’s weird or a freak. They feel slighted and as though Ben is getting away with behaviors he shouldn’t.
  • His vocabulary is expanding daily to the extent I feel like a bumbling fool around him at times…his eye-rolls and heavy sighs suggest he agrees. (Sorry mommy is so inarticulate, sweet pea.)
  • He is fascinating when fixated on a character or movie. For years it was Darth Vader. Anything and everything was subject to becoming part of a Vader costume. For now, it’s Avatar. He recently drew, colored and cut out an arrow to tape to his forehead as well as a paper collar to wear around his neck.

You can’t NOT smile at this boy. Even when he doesn’t smile back. Which is often. But I’m learning to be okay with that. I'm continuing to work this that we have the corners, I'm sifting through the middle pieces.  I’m working to distinguish the difference between Ben being lonely and being alone. I know now that those are two different things. I’m beginning to understand that for him, being alone is decompressing. It’s necessary for him…often.

Tough for a momma who struggles to tolerate the sound of her own thoughts and breath to understand.