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!

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.    

33 comments:

  1. this is my favorite blog EVER. I think you are amazing!

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    1. Thank you, Nitty...you're pretty amazing, yourself. xo

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  2. Love this! Thank you for sharing. I would love to talk to you about this more. I have some concerns about my son. Nobody else seems to think anything is different about him, but I know. You are awesome!

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    1. I would be MORE than happy to chat about this. You can always inbox me on fb OR email me at blissfullydiscontented@gmail.com. Either way works for me! It always helps to talk it through with others.

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  3. This brought tears to my eyes mama. Thank you for sharing your journey, all the ups and the downs. You have such amazing kids. Xoxo

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    1. Thank YOU for reading! And yes...my babies are spectacular. Sometimes it takes writing it down to remind myself. :-)

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  4. You are amazing. Your kids are amazing. And seriously? There is NO way you are failing because you are teaching them the most important lessons of all.

    My mother's youngest brother has Down's Syndrome. My mom and one of her brothers grew up with my Uncle Donald (the two oldest were already in high school by then), and my mom said it had an incredible impact on how she and her brother viewed life and the world.

    Many hugs, you're doing a great job.

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    1. Thank you so much for the encouragement and the reassurance. I may not be failing them longterm but I've certainly had my failing moments. Just need to work on minimizing those! Thank you for reading and hugs right back to you!

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  5. You are so special..graceful..brave. Thank you for being so truthful and open so that others can follow your lead. xo love you girl.

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    1. Ah DG...you're the one who inspired the writing to begin with so thank YOU. It's my very own personal therapy. Love you too! <3

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  6. When one finger is injured the whole hand hurts...and when one family member needs more, the whole family is affected. I think you are doing well, and I hope I can do as well, when my daughter is a little older. For now, well, we all do our best. I think you have awareness and insight, and that in the end, your kids will be fine, and remember their childhood with more fondness than frustration. Keep at it. Your kids sound amazing, all of them, and so do you.

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    1. Goodness...thank you so much for the encouragement. I'm just starting to realize how this is affecting the whole family. As much as i try to manage it as a single issue, it's just not possible. I appreciate your kind words! xoxo

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  7. Today I was sent here from a link off a facebook (The Underachiever's Guide to Being a Domestic Goddess). I did not expect to find this. I cried through the entire post. I have a nephew who's two and has some sort of autism. We don't know how severe it is, but it's definitely there. I have often worried for him, because I don't know what the future holds, but this child-like insight has opened my eyes to what his future could be like, especially if he is ever blessed with siblings. You are brave to lay your heart out like this, and your children are brave for trying to make sense of Ben's and your situation. Good on all of you! Ben is very lucky; some are not.

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    1. What you've said is why I continue to share this path with you all. Everytime I write, I am introduced to someone new who has either been through this very thing OR is just realizing they may be facing the same road. Thank YOU for sharing with me. :-)

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  8. You are teaching some wonderful lessons to your kids and sounds like you are doing an amazing job at it.

    Beautiful post!

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  9. I read this blog with tears running down my cheeks. Thank you so much for sharing this with us. Your words struck me so deeply that I don't even know how to put it in to words. Your children are in great hands.

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    1. Thank YOU for reading! And I really do appreciate your kind words. I'll just keep pluggin' away... xoxo

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  10. This was wonderful. Words are failing me to say more. Thank you. -just keep swimming

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  11. just wanted to tell you that you are not failing...libby says it best when she says you are beautiful,super, and awesome..you basically just rock as a mom!!!!! im so lucky to be a part of this cool little family of yours and i thank god everyday that you and i met!!! just remember keep swimming momma you are doing awesome!!!! love you ♥

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    1. You have no idea how badly I wish we were still next door neighbors. You get Ben and always have. He loves you and so do I. You'll always be a part of our crazy little family. I love you too! xoxo

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  12. I came here via "Tripping while standing still" from FB today. Not knowing what to expect... and wow, I'm floored.Balance. The eternal struggle. Be it between home and work, husband and kids, kid 1 and kid 2, food and exercise (OK, that's just my personal lack of willpower!). You are doing the best that you can and you don't have to balance everything all the time. You do the best you can in the moment and it seems to me that you're doing an amazing job. The fact that you are aware and care enough to find resources to help says that you are finding some sort of balance.
    Keep at, amazing woman, and know that we're right behind you x

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    1. I can't tell you how much I appreciate the reinforcement! I try hard to balance...and do okay most of the time. But every once in awhile I realize i'm faltering and have to put myself in check. Thank you so much for reading and for your kind words!

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  13. thank you so much for sharing. you are an amazing woman, and your strength is inspiring. your kids are pretty amazing, too; you've done a great job.

    keep your chin up, and take it one day at a time. XOXO

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    1. Thank you, little momma! The kids are amazing...I just aspire to be as great as they are. I fall short pretty often...I just have to keep trying. :-)

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  14. This made me cry too. I totally understand. When we got custody of Mr. Brady's 4 children, they all came with abandonment/behavior issues and one is developmentally disabled. I love all 8 of the kids so much but I am one woman spread so thin. This cuts straight to the core of my mother heart. My children have had to go through the same things. Your daughter sounds well adjusted!!!! You are doing well.

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  15. That was so beautifully written and I am in love with your sweet family! YOU are DEFINITELY succeeding--please don't be so hard on yourself. It is so clear that you are doing an incredible job--just look at your children! And look at your RESPONSE to your children--you are an inspiration. So many of us struggle with parenting every day and do not have the added "puzzle piece" of Aspergers or anything like it thrown into the mix. Whatever you are doing--keep it up because what you have been doing has helped to create some pretty terrific kids. Sure, there will be days that you will want to erase and get a do over, but that happens in every house, doesn't it?
    http://anothertiredmommy.blogspot.com/2012/02/what-do-you-eat-for-dinner.html

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  16. What amazing kids you have and you are a strong, wonderful mother. Thank you for sharing with us. It sounds to me like you are doing a wonderful job under extraordinary circumstances.

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  17. Thanks for joining the hop! I'm your newest follower. Love the blog!

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  18. What a wonderful family you have! Such amazing kids!

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