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 puzzle...now 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.

27 comments:

  1. What painfully, brutally honest, beauty in your writing.. He is beautiful - a brilliant mind, a sweet, old type of soul. I cannot imagine the pain that you, as a mother, feel for him..but he is loved - and filled with love by you and your wonderful family. I wish I could tell you that everything will be perfect and wonderful...but all I can say is that you are an amazing, strong, smart mommy that he is so lucky to have.
    Let me see what I can do about getting you a weighted blanket...I will beg borrow and steal - that's how much I believe in the healing properties of those things!
    I love you girl..I hear your words..I feel your pain..and I am sending you strength to keep fighting. xo

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    1. You are soo soo good to me. :-) I submitted my email for the contest and have my fingers crossed! Either way, it's just nice to know he's got so many awesome people wishing good things for him. Love you, girl! xo

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  2. I know it's hard, but you are doing everything you can to be his advocate.. And, as you've said...no matter the diagnosis, Ben is still that awesome kid he was the minute before the official diagnosis :-)

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    1. You are so right...and I appreciate the shoulder and listening ear. And THANK YOU so much for the link to the summer camp. I have the application filled out and ready to send!

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  3. Oh BlisDis, Fuck Holland will be our New Rally CHeer...I have never even met Ben ut I want to give him five and tell him how cool he is and how much his avatar arrow rocks. I am sorry you are hurting, sorry he is hurting, but so glad he has you as a parent tohelp him through this. wish we could have a jita and rita night!

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    1. his avatar arrow totally rocks! ;)

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    2. We DO need jitas and ritas...poolside! Thanks for being there by me to tell this crap to suck it. :-) You're the best...love both of you girls!!

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  4. Beautiful. Love and light to you and your boy, mama. xoxo

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    1. Thank you so much for that...and for reading. :-) It means so much!

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  5. you know--we all come across that poem at about this time--this "early in the diagnosis, doesn't SOMEONE know what the FUCK is going on" period of time when nothing tastes right, and you feel like you're spinning your wheels and the last thing you want to hear about is tulips.

    I've been there sista. we all have. and i rarely meet someone in our shoes that actually likes that poem after all is said and done.

    fucking Holland. I mean, who even likes Amstel light?

    Take heart mama--you are doing everything you are supposed to do, and no matter where this road leads, you are being the best mama you can be. And THAT is was matters.

    holla at me whenevs--Dawn...This Side of Typical

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    1. Amstel Light DOES suck doesn't it!?! :-) Thank you, momma for the support. It's all still so new to me but I appreciate being able to share this journey. It truly is one of the few things keeping me "sane". (And I'm using air quotes with that!)

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  6. Wow!!! SO beautifully written. What a fabulous little boy! I am so sorry that you have to go through this pain that you are feeling for him and his struggles. I was a spec ed teacher for years, even have my Masters degree. I know this. I know Asberger's very well. You are doing such a WONDERFUL job!!! and if those tears come, let them. and if you need margaritas, just DRINK them :)

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  7. I agree you are doing an incredibly awesome job advocating for your child... you go Mama!!!

    "Tough for a momma who struggles to tolerate the sound of her own thoughts and breath to understand." ... those words hit hard, well that and the entire post! I've struggled with the slight ~awareness~ hint that my daughter is different, it is a big part of why I home-school her. It is the reason I home-school her... I did not realize it until I read your post ~wow! My head is spinning a bit! I took my daughter out of public school 6 months into her kindergarten year... I could not stand the sound of my own thoughts!!!! It looks like I've got some processing to do.

    Thank you so very much for your being open about what is going on... this has really helped me! I am sorry, though that you are hurting.

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    1. Ugh...its amazing how much we internalize what is going on with our babies. Thats what we do though. Thank you for letting me be open about all of this, and for reading. It means a lot to know that I'm not the only person in the world who has felt this way. xoxo

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  8. prayers yourway, added them to my prayer list! I have someone that i want you to speak with, she has two boys and can relate and help you AND she is a hilarious beautiful person. As I took time to read this beautiful moms(YOU) story, I thought of her! :)xxx

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    1. THANK you so much for the prayers and positive thoughts. We can always use more of those. :-) I'm always game for meeting new people, particularly if we share interests or struggles. xoxo

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  9. Beautiful words from a beautiful and loving mother. Much love to you mama!

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  10. You are on a unique journey, no doubt. Your son is lovely and you're a wonderful mom! IF I may suggest something...I'm an old 'warrior' of autism spectrum disorders, and there is an old curriculum for social skills that is laid out nicely. It is called Skill Streaming and if you can get your hands on it, it may give you and teachers/interventionists some nice guidance in planning your son's goals. Best of luck to you!

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    1. Oh goodness...thank you for that! I will definitely look into that. We can use all the help we can get. SO great to find support here! Thank you! :-)

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  11. Sometimes it is ok to be alone. But if he is lonely, that is different. I am basically an introvert, and my husband has suggested that I am more than a bit Aspie myself, but I like spending time alone, and have since childhood. I always got along better with adults than with kids. I was reading and writing before age 4, academically advanced, and socially isolated and awkward throughout my childhood, and even now. Try not to push or be too negative about the need to be alone. Unless it makes him unhappy, it is just a part of who he is. Make sure he learns as well as he can how to be with other people and make friends if he wants to, but otherwise, don't worry. He will be just fine being who he is. Himself.

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    1. Yep, its definitely tough for me to understand. I absolutely hate being alone...for very long, at least. I equate alone with lonely which isn't always the case. I'm certainly learning for Ben it's a good thing sometimes. I appreciate the reassurance and encouragement! Thank you. xoxo

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  12. As the momma of a son who gets overwhelmed when too many kids are around, I understand some of how you feel. I worry that no one "gets" his humor, his costumes like Ben's, and I worry what people think when he says, "I just want to play by myself" at his own birthday party. :) You are doing a great job and are so supportive of him. So glad you have a good friend you can vent to over stiff drink! That helps so much! :) Big hug to you. :)

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  13. Absolutely beautiful. The tears I cry are not of sadness. They are of joy. Your strength and love for your son are incredible. It is going to be a long road. You have many on your side and I'll always be one of them. Much love to you and your family. Xoxo

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  14. Bliss Dis- I stole that from Nitty Gritty- Oh I wish I could give you the answers you need. It is frustrating as hell!! I know I've mentioned before my brother in law's diagnosis of Asperger's not until his 30s!
    He is so lucky to have you be his advocate, his warrior and and champion!
    Big hugs!

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  15. Your beautiful son is so very lucky to have you for a mom. Your love for him shines through in every single word that you write and you are an inspiration to every mother who comes across your blog.
    My daughter and I are starting on this road with my grandson, and I can't even begin to tell you how much your blog has helped us.
    Also, there is another wonderful blog that I think you would benefit from reading,http://whatlookslikeordinaryonacrazy.blogspot.com/. She is a lovely women with an amazing little boy.

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  16. First, no teacher is equipped to give or even suggest a diagnosis - that is a complex process. Second, all bullet points you listed (classroom and otherwise

    ) fit my oldest and middle child almost exactly. My middle child, now 8 has an Asperger's diagnosis. My oldest, now 10, sensory and auditory processing disorder, social anxiety and hyperlexia. My youngest is what they call "typically functioning".

    We've dealt with all of this for so long, that it is sometimes hard for me to remember the time when we were trying to put together the pieces. We went outside the school system - to a private therapist for an assessment. It was well worth the money spent.

    The official diagnosis actually made me feel relief - that we knew which way to go.

    Hang in there. Feel free to contact me if you have any questions.

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