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!

Wait. 

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.

Sigh.

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.