Day 59

Friday October 15, 2010

I woke up at 5am....itching! I had a rash all over my body, stress induced! I try so hard to keep it together but I fail to recognize that if I don't get my stress out one way, then my body will get it out another way...this time in the form of hives! Initially I laughed at this latest insanity but then I became overcome by the destruction in my life that is ever growing. Please refer to the entry Seriously??? Fine!!! Bring it!!! for more details. In summary, I went for a very long and very clarifying walk on the beach!!

The rest of the family woke up to sunshine today! Nina and Addie slept on the bottom bunk and I slept on the top bunk. Since we got back from Cedars she has avoided using the stairs at our condo. Her equilibrium is really impacted and she feel very unstable going up and down. Consequently, I had expected that she would have wanted to sleep downstairs at the beach house but she didn't. It is amazing how motivating her cousins are. She literally stood at the bottom of the stairs and took a deep breath and proceeded to crawl up!!! It was a breathtaking sight to be hold. I jumped to her side to help her walk but and she growled at me, "I can do it!" She is so fierce it leaves me speechless at times. She simply sets her eyes on what she wants and won't back down. She has always been our fierce child, the one that things come easily to, the one that is over-confident and bold. But now, instead of the limitations she is experiencing physically causing her to back down and be less intense, she is demonstrating the opposite. When I am struggling with my own demons, I try to remind myself of how she is fighting and how I want to fight right beside her!

Breakfast at the beach house is always a big deal! Our families love breakfast and vacation for me means getting to cook fabulous meals that make everyone happy. I think the meal that we all love the most when on vacation is breakfast. There is always some kind of pork product (as my father-in-law likes to say) sizzling (bacon & little smokies are the all time fav), calling anyone who is left in bed to the kitchen table. This morning we had french toast with strawberries and whipped cream, along with smokies. Nina was particularly pleased, but then again she has never met a breakfast that she doesn't love :)

The dynamics of the kids is a very interesting one, especially for a nerd like me that is always assessing child development and how environmental variables impact and shape relationships. First of all we have Sosie, who is 15 years old and consumed by everything beautiful and annoying that is adolescence. Todd and Joe never had a sister so having daughters is like having to learn to speak a foreign language! I have lost track of how many times my brother-in-law has asked me if something Sosie is doing is normal and I always say "yes"! My favorite inquiry about normalcy was when he called me concerned about how Sosie and her friends are constantly taking photos of themselves. I laughed, which he wasn't too thrilled about initially. I explained that "photo-shoots" and "modeling" with girlfriends were practically a developmental milestone for teenage girls and that I had spent hundreds of hours doing the exact same thing with my cousins and friends when I was Sosie's age. I'm not sure if my confession brought Joe any comfort....quite the contrary, I think the thought of me at 15 posing against a poster of Tom Cruise a la Top Gun disturbed Joe profoundly...maybe that's why he avoids making eye contact with me now :)
Shortly after this conversation, my own brother (while he and his wife were unpacking boxes in their new home) found a set of my teen-modeling photos with our cousin Elsa. Not only were they hyseterical, they were also in black and white (we were so avant garde!). I showed these photos to Joe and Sosie. Sosie was embarrased for me at how "goofie" we were (there's that adolescent lack of theory of mind..ha-ha) and Joe, well Joe was disturbed!

In general, Sosie hangs out with the family for short intervals then retreats to her computer, making sure she keeps up with friends on Facebook and MySpace. I have especially loved seeing Sosie's warmth toward the younger kids grow in response to what is happening to Nina. Bottom line, being a teenage girl is hard! You feel so insecure about everything but desperately want independence. Most challenging of all, you don't know what do with the internal struggle of having a woman's body (and all the maddness that accompanies that!) but still feeling like a little girl. As I watch Sosie, I relive my own adolesence and all I want to do is hug her constantly and tell her she's going to survive! I think that I have been particularly hard on Sosie, partially because as adults we try to help the younger generation not repeat our same mistakes. But as I watched Sosie cut up extra smokies for Nina, my heart melted! In spite of the teen drama, Sosie is growing into a lovely young woman, who has a heart for children and a real talent for working with kids with autism. I am just so grateful that I get to be a part of her life, teen angst and all :)

After Sosie, there is Adelae who is 11 going on 30! I am very interested to see how adolescensesupervsing them, feeding them, guiding them. Addie is a natural teacher and a giver so taking care of the family is second nature to her. My only concern with Addie is making sure that she isn't parentified but she basks in the glory of being the big cousin that shepards the younger kids. She and Nina are particularly bonded and they usually spent the entire during vacations playing together. Nina adores Addie but she doesn't let Addie boss her around. Quite the opposite. Addie is constantly accomodating her little cousin's whims, tantrums, and demands, all with a smile. The only time Addie doesn't smile is when Nina is giving her the "stink-eye" in severe form, like not wanting to share the bunk bed with her. That's when sadness creeps into Addie's eyes and I have to talk to Miss Nina and remind her that she needs to be loving and not a grump! Thankfully, Addie easily forgives Nina's (and the other kid's) faults and within a few minutes they are all happy again, at least momentarily until the next crisis arises :)

Then we have the three boys: Silas (9), Teddy (8) and Teague (5). What can I say about these three stooges other than that they are boys...that says it all! They are loud, physical, and destructive! I feel like I spend most of my time trying to redirect them to be a bit quieter and to not be so rough (how many times does it take for them to learn that if they are wrestling violently with each other someone is going to get hurt??) I have a younger brother and have worked with boys most of my adult life so I recognize the difference between boys and girls but they are soooo loud and soooo rough! Silas is the ring-leader, given that he is the oldest. He is built for strength and athletism but he also has an accutely soft side to him. Gordy told me that as they were pulling up to the beach house on Friday night, he reminded the kids to not comment on Nina's weight gain and explained that the steriods had caused the puffy cheeks. Silas turned to Gordy and said, "It doesn't matter, she's always beautiful to me!" I got goosebumps when Gordy told me this story! What a heart of gold!

Teddy clings to every thing that Silas says and does. He worships his older cousin and Silas is very patient with Teddy. It is sweet to see how Silas takes Teddy under is wing and how Teddy tries to keep up and even exceed what Silas can do. Teddy's strength is his amazing imagination and both Silas and Teague love that about Teddy. I love watching the three of them create worlds, themes, and plots. Too bad the always, ALWAYS involve some form of destruction :) I especially love the look on their faces (total confusion!) when I suggest that they play schoolhouse :) I guess that isn't as cool as Star Wars: Attack of the Clones or Spy Agents. Oh well.... no one can say I don't try :)

The biggest challenge with the boys is making sure they don't exclude Teague. Poor Teague normally meanders between playing with Addie and Nina and then the boys. He's at the age where he desperately wants to keep up with Teddy and Silas but can't quite yet physically or behaviorally (i.e., controlling his temper). As such, he normally bounces back and forth and I have to remind the older boys that it is not okay to exclude anyone. I usually get some resistence but compliance in the end.

After breakfast, the kids were all off playing. It was still striking to see Nina climb up and down the stairs. At times (probably when she was more tired) she'd crawl up and to my amazement so would the rest of the kids!! Without any adult having to prompt them, they modified their own behavior to match Nina's so that she wouldn't feel bad!!! How extraordinary!!! How compassionate!!! How humbling for us adults to witness!!!!

Around mid-morning, my undergraduate mentors and former bosses (where I first learned to do ABA with kids with ASD) Jane Howard and Colleen Sparkman arrived. They live in Modesto, which is only a couple of hours away from Pajaro, so they had decided to come for a visit. Jane and Colleen are the embodiment of kindness and generosity! I would not be who I am professionally or academically if it weren't for them. They took a hard-working undergraduate who lacked any real awareness of her own skill-set and shaped her into a professional with a heart for helping special needs children. I vividly remember wondering why Jane and Colleen gave me so much special attention! In fact, it often made me uncomfortable because I felt that they saw a potential in me that I didn't see in myself. How grateful I am to them!

For lunch, Colleen and Jane took me to a darling Mexican restaurant in Moss Landing called the Haute Enchilada. The food was wonderful (Colleen and I had crab-stuffed pasilla chiles...yummy!) and the margaritas perfect!! Over chips and salsa we laughed at all of the adventures Jane and Colleen had over the years and I thanked them for all of the love and effort they had poured into me. I explained that now I realized what they had done; they had seen a potential gem and decided they were going to help polish it. As an adult, I now had the privilege of doing the same thing for up-and-coming young people. They smiled the most loving of smiles as I commented on how I finally understood why they had done what they had done and how I am thrilled to do the same thing for others. When I was young, I didn't understand what Jane and Colleen got from mentoring me. Now, I do! It is such a pleasure and thrill to see a star, particularly when they don't realize they are a star, and help cultivate it! Mentoring young professionals is perhaps one of the things I most love about my work. I recounted the first time I saw Sharon and Larisa working with kids and how I had immediately recognized that I was witnessing something very special, the emergence of incredible talent! We also laughed at how incredible talent does not like attention! Seldom do people who are really amazing spend their time telling others how fantastic they are. Quite the opposite. People who are truly amazing often shy away from accolades, even when they finally realize that they are a rare talent.

In spite of the great food and drinks, our laughter was interspersed by tears and heart ache. Unfortunately, Colleen and I share a grief that very few people get to experience. When I worked for Jane and Colleen, Colleen's 9 year old daughter Kendall died unexpectedly one January morning over 10 years ago. I remember that day as if it were yesterday. I was doing therapy with a child in Stockton when I got a call from the secretary informing me that Kendall had died from an unidentified blood disease. I recall hanging up the phone and thinking I must be dreaming. I had just house-sat for Colleen and her family the previous weekend and had gotten the most darling hug from Kendall. During my grief-stricken yelling fits in LA, I had thought about Colleen repeatedly! I told myself I wanted to be like Colleen and delight in the blessings that my daughter had brought! Over lunch, Colleen and I held hands as she told me how Kendall's life and death had shaped her life and the life of her other two children and husband. I refuse to give up on hoping for a miracle but I must confess that it is an immense comfort to know that Colleen will be there holding my hand and mentoring me through this awfulness, just like she has always mentored me!

After Jane and Colleen left, I joined the kids down on the beach. Nina had spent most of the day exploring the outdoors with her cousins. It was incredible! Todd said she had gone on a 30 minute walk without taking a break! She was so happy to be with her cousins and family and it was evident in everything she did. The rest of the evening was delightful. As I helped Gordy and Sharon clean up after dinner, I tried to memorize the sounds of laughter and goofiness that bounced off the walls all around me. I desperately tried to fight off the tears that kept threatening to emerge as I contemplated how empty things would seem if we had to return someday without Nina! How could we ever be complete again? How could we ever return to the beach house without our honey-girl? I sat at the bottom of the stairs and wished that Colleen was next to me, hugging me!