Posted by: alegra22 | January 12, 2010

Searing Brilliance of the Sun

Anyone who has spent time around Sol will nod in recognition when I use the word ‘intense’ to describe him. We have joked with most of our friends about Sol’s sense of order, his lawfulness, his focus, his anxiety, his literal interpretation of the world and his formidable memory. It has been challenging at times but we have always seen these qualities as his gift, the beginning of his purpose in the world. As Sol has grown older, his language skills increased, his social patterns becoming more apparent, the amount of effort it takes to translate certain aspects of experience for Sol has become clear to us. At times the relentlessness of his questions, his need for all things to be ‘even’, the angry anxiety that erupts when things transition too quickly or something confuses him, and what I can only express as a feeling of bottomless need that surfaces in him, can be exhausting. In that exhaustion, the feeling that I have failed him haunts me and drives me to recharge, begin again, try to understand and meet his needs.

Sol becomes easily confused by humor. He doesn’t read body language the way that Zaviera does. She might not understand everything you are saying but she summarizes by taking in the context and delivery. She can ‘read’ the emotional language of the people around her. Sol is unable to do this. He needs you to explain to him in very literal terms what is happening and why. If you are laughing he needs to understand why it is you’re laughing. He needs you to tell him a joke is funny. That sense of bottomless need that breaks my heart arises when he senses he is not getting ‘something’ that everyone else is sharing in. His way of making sure that he is included is through anxiously demanding in a very literal way that he gets what everyone else is getting.  An example is that if we say something playful and nonsensical to Zaviera and she laughs, he doesn’t understand why she is laughing or why we said what we said, and because of this, he feels left out. He needs us to go through the same motions with him, repeat the phase, imitate the laughter, for him to feel included and secure. He doesn’t genuinely get the joke but things are even, he is being included.

Somewhere along the way, the reality that Sol might have Asperger Syndrome began to surface. It came up through friends who are familiar with the condition, my father who is a psychologist, and Sol’s patterns becoming more apparent. We would often wonder if he had inherited some of his Grandfather Clarke’s genetics because Dan’s father displayed the traits of someone with AS but was never formally diagnosed. Watching a character like Monk on television we would find ourselves laughing, saying things like, “That is SO Sol.” We used words like “obsessive” with a deep affection, and, at times, I admit, weariness. But we have never felt like there was something wrong with Sol, only that he was a challenge with great reward. But lately, the reality of all of this has landed home. We are going to Sol’s preschool check-up and will discuss it to see about having him evaluated. Whether or not he receives an official diagnosis doesn’t bother me. In fact, I don’t want him labeled unless it is going to help his needs be met in the world. What is important to me is that those closest to him understand and help him.

This morning Dan and I read through a book on Asperger’s Syndrome and found ourselves nodding and laughing with relief: Yes! That is exactly what he does!

We also found ourselves feeling a sense of pride that we had been meeting his needs and becoming aware of the particular way he operates without having a label or guide for what were doing.  I am often weary of labels. They serve as keys that can unlock a door and provide freedom but they can also imprison. In this case, the label serves to unlock a door for us and for Sol’s future. I have a stack of books that my mother sent on dealing with Aspergers and all postnatal hormones aside, it makes me want to cry. With relief. There is a freedom in my chest, around my heart, a space that has opened up in realizing that there is help in understanding how to meet Sol in all of his searing brilliance. Since his birth, we have struggled at times with feeling like we were failing to connect with him and guilt that it felt so much easier to connect with Zaviera. Now it feels as though we have been handed the material to complete the bridge we have been working to build day by day from instinct, perseverance, and love.

I’ve always wondered about the significance of Sol’s name.  Dan has had the final say in naming all of our children because he has a strength in trusting his gut feelings. Lately it has occurred to me that Sol, the sun, is the perfect name for our firstborn. There is a light to him that divides the gray areas, casting shadows out from hiding. He burns in his intensity but he also nurtures and warms in his sensitivity, his desire to love and be loved, to be accepted. His innate integrity, his desire to understand the world, often reduces us to tears. We are honored to be his parents.

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Responses

  1. Beautiful. A window into your life…and Sol’s.

  2. Wow, I really like what you have to say in all of this of course, but especially with the last paragraph about his name. As parents, you both appear to have a very intuitive care and concern in understanding your children. There is no way you could fail him because you have written this essay and that says plenty (about you). You have a refined awareness about your children that others may over look or dismiss. He is a lucky boy and you are very lucky parents to have him. I love this picture by the way and all of the pictures of the kids. What you say in your words, your pictures expressed the same. I also like what you have to say about labels, it’s two sided.

    Good luck in your venture on this one. He sounds like a very special person and already someone who will lead quite a profound life, just like you!

    • Thanks Jennifer. It is hard not to feel like I have fallen short far too many times with Sol but I’ve continued to try to forgive myself, reassess the situation, begin again. I think it is a chronic condition of motherhood in general but with a child who has special needs it becomes even more so. I am just grateful to be surrounded by so much support and to have the resources/information to give us that extra help in supporting him and supporting ourselves – because as a parent we want nothing more than to have our children know that they are loved and understood and secure with us. Anything that can help us in this is invaluable.

  3. Beautiful post. He’s as lucky to have you for parents are you guys are to have him.

    • Thank you Cathy

  4. Can you please write a post that does NOT make me cry?

    What a lucky kid.

    • I promise I have more tricks up my sleeve! I managed to make myself cry composing this one.
      xoxo

  5. I am simply and utterly proud that you are my daughter

    • And I have always been simply and utterly proud to be your daughter. I love you Papa.

  6. You’ve been blessed (and so has he). Sol sounds a lot like my nephew, now a brilliant 20-year-old star that has found his way in the universe, surrounded by like-minded friends. His amazing mother lovingly embraced the challenge, as you are doing now, and the results are truly spectacular. Thanks for sharing your touching story.

    • Diane, that is how Dan and I have always felt with Sol = blessed. We feel even more so now that we are able to meet his needs in more specific ways. His natural integrity, his brilliant mind, his sensitivity are all rewards that have made the challenges of the other parts well worth it (and don’t we all have our challenges?). Thank you for sharing your experience. I have always found that hearing from others about their experience is a great comfort and source of strength.

  7. Now your dad is making me cry too!!

    • He made me cry. But don’t tell him ;o)

  8. Working at the school I work at I have come to understand, recognise and love children with ASD (Autistic Spectrum Disorder) and you are right, labels can be very two sided. For some of the kids at my school, their “labels” have restricted them in the world and made others view them in a very negative light. But for some, it’s just a way of helping others to understand their needs and provide them with the best care and education possible. I think in Sol’s case, it will definitely be the latter.
    If anyone is struggling to understand Sol, make them read “The Curious Incident of the Dog in the Night Time” by Mark Haddon. It is a wonderful book that provides the best insight into a person with ASD that I have EVER come across.
    I know it will be hard for you, my free-spirited Alegra, but Sol will thrive on Structure. Provide him with as many visual aids/timetables as possible, especially as he transitions into the school world.
    You will be fine with him, you are strong and loving and you are already doing all of the right things for him.
    Love you all

    • Amber, it is so interesting that of all the things you could have mentioned you brought up the pictures/chart. We have been trying to do charts for a long time and I had even intuitively made a chart out of pictures but the pictures were too specific and it flustered him. For example, I drew a picture of ‘t.v. time’ and it had Sol and Zaviera sitting in front of the t.v. watching Finding Nemo. Sol thought he had to sit in the exact position I had drawn him in and that the only show he could watch was Nemo! But if his schedule goes out of sync at all he really has a hard time and we have already learned that if there are any changes we have to discuss it at length with him in advance – if the changes involve something familiar he handles it better if it is sprung on him. But what I meant to get at involves the picture thing. You know how I use my hands a lot when I talk? We thought Sol had picked this up from me because he uses his hands to draw pictures in the air of something he is talking about….but last night when I read about the use of pictures it clicked in my mind. He is drawing pictures in the air to help focus his mind! I tested my theory with him when I used a word he didn’t understand. I tried to break the word down into an easier to grasp reference and I acted out the word with my hands into something visual he could grasp. It worked a charm.
      xoxoxo

  9. Again you amaze me. What lucky kids they are to have parents so supportive. I was thinking of my grandfather just now and how he would never have made any compromises or tried to consider how his kids felt.

    It sounds like you have a lot of challenges before you, but challenges that, as you’ve expressed, will only lead to truly wonderful places. Sol is a very neat kid and I love learning about him.

    I also love the way you seem to place your family, your life and everything in a shroud of lore. It feels like there is a mythology within it all, an allegory. I dunno. It’s still a bit early for me.

    Hugsies and love to the earth’s edge.

    • Thank you Adam. I often feel like I don’t do enough – but you know how that is. I loved what you wrote about the ‘lore’, it clicked something into place in my brain and I realized you are right – I do see everyone in my world as grand characters playing their part in a beautiful story. And you are definitely one of my favorite characters!
      Hugsies

  10. Your blog was beautiful. I am glad that the books have helped! The journey you are on with him is not an easy one for any of you. As I told you when we talked, I go through fears for him and his future but I also know he is blessed to have you for a mother. And, I am blessed to have you for a daughter…and beyond blessed to have Sol for a grandson. He has shown me beauty that I might have otherwise missed in so many ways it would take several pages to list them all.
    Shortly before we returned to the US I took a walk on the beach and as I walked, I thought of all the shells I have collected in my lifetime and how none of them are exactly the same. They appear to be, but they aren’t. And, I thought about how we have been told that “god gives us only what we can each handle”. I also thought about how Sol is an amazing gift to all of us and his needs have made us all slow down a bit and find new ways to see the world. In all these years of collecting shells I never thought too much about their differences until Sol pointed it out to me. I believe that he is here in this family for a reason. Maybe the reason is to make us slow down and see the differences in everything and to embrace it all.

    I love you very much, Sol’s mother.

    • The books have been an enormous gift! Honestly, I have been buzzing around with revelations. Having the ability to now put into words what we have been observing and then to be given some strategies to try out – it is like being given a key to a puzzle we have been trying to figure out for years. Already a few of the simple things I have tried out have worked. It will always be challenging because parenthood is challenging but in some ways, Sol is a very easy child (requiring a great deal of patience, yes, but well worth it) as long as he is being met in a way that connects. I am so honored to be his mother. The way he is made is something that I admire.
      I love you Mama – just about to go write you an email.

  11. He will grow into a fine young man but before that, I’m sure he’ll realize what tremendous parents he has. You guys are lucky to have each other; the rest is just hard work and love.

    My daughter’s observation of the day:
    “I like being a kid.”
    “Why, honey?”
    “‘Cause everyone loves kids.”

    From your lips…

    –John

    • Thank you…I always feel like I fall short of being the type of parent my children deserve but I have a suspicion that this is part of the parenting package.

  12. I am so glad that Sol has parents who are working to grow with him. He is a brilliant fellow and near and dear to my slightly AS heart and soul. ;o)

    You and Dan will keep him from ‘blowing out’ if you stick by him and help him through the maze of humanity that he doesn’t grasp in the same way as most others. He is a lucky boy and you are lucky parents to have such a gift in your life.

    Lots of Love to All of You,
    Sister and Auntie
    xoxoxoxoxoxo


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