A moment of clarity

In case you are new to my blog or you don’t know me personally, you will need to go back to the blog post “Lost in Translation” to get a glimpse of where I am today. Long story short, Bryan got lost at camp last year and the camp covered it up. I only found out by a chance encounter in the Greenville, SC airport with a wonderful woman whose family rescued Bryan from what could have been a treacherous situation.

So, you may say, why send him to sleepaway camp again? First of all, it’s a totally different camp. We believe in the benefits of sleepaway camp for kids to have fun, grow and just learn how to get out from under the control of their parents. Not only do you have to be responsible for your things, you must be responsible for your emotional and social self too. Besides, it is really a Jewish kid’s rite of passage if nothing else. My emotions have truly shocked me for the last few days. I thought I would have an element of relief when Bryan got to camp. I did not bring him so I didn’t get to see the place but I had seen the DVD and Earl took pictures. My feelings can only be described as a guilty fearful nausea anxiety filled panic. Last year we trusted people with Bryan and they lied to us. I know logically that not all people do this; most people who deal with our kids know the importance, the significance, of trust between parent and caregiver but I feel like my ability to judge is not trustworthy either. As the mom I feel like, what did I miss in the vetting process last time? Did I catch it this time? He arrived at camp on Saturday, we have called each night since then to check on him and his progress. The info they have given sounds consistent with what we know about how Bryan handles stress. We are beyond proud of him. We know he is slowly but surely warming to the place and by end of the week will have emerged as the great camper and smiley boy we adore. But here is the weird thing. I have been having nonstop waterworks since he left. The challenge is not really about whether or not he will be ok there. Of course he will be ok. It is a wonderful place filled with people whose entire goal is to get him to participate and succeed. My issue, which took me a few days to figure out, has nothing to do with the camp. It is about my relationship with Bryan. He trusts me completely and I need for him to know in his heart that I did not turn my back on him by sending him there. It is out of love, respect and wanting him to be the best boy he can be. He was not “harmed” last summer by what happened, thankfully. However, because he is such an intuitive boy, I know he knows that I was devastated by what happened. Jason always talks about it too, embracing my emotions and offering up his own fearfulness for Bryan. He knows in his heart he has not been sent away; he knows Jason is going for 6 weeks too, so it is certainly not about not wanting him around. Because he cannot truly express his feelings to me, I need to dig deeper and focus on the moments where he looks me in the eye and we connect in a way that I know he is in there; not to be too sappy but at those moments I feel electricity between us. We went over everything before he left. Last night when I spoke to one of the folks at the camp she said for some kids they need to learn that they are going home at the end of camp. That is not Bryan’s issue. He knows exactly when we are coming for visiting day and exactly when he is going home. Although he is at a new camp, he knows you go to camp and then you go home. Mean what you say and say what you mean. We always do that with him. He also knows that we expect him to cope and cope well. Earl always tells him “you’re a big boy” and he knows that he has to “man up”. Earl can get him to understand the difference between behaving like a little boy and taking hold of himself and acting like the 12 year old he really is, it’s amazing, truly. Although I am sad and fearful, I do not want that to rub off on him or take away from the feeling that Earl and I share about never underestimating who he is and who he will be.

Deflated…

Yesterday I got an email from one of my autism connections about a work program for  adults with autism to work at a car wash.  Like many other things, what upsets me is not what was actually communicated but rather what it may or may not represent for Bryan or other kids on the spectrum. I know it is just a summer job program and it’s good experience, but I feel like it is such a low skill job for such highly intelligent individuals. Now clearly there is absolutely nothing wrong with working at a car wash, I’m neither a snob nor an elitist. But this posting just touches a nerve. What will Bryan do when he grows up? Will he be able to have a job? Will this job be something that has meaning for him or will he just be the awkward person in some company that people are polite to but don’t want to interact with?  Earl and I had lunch yesterday and I shared my thoughts about this with him. Typically he would tell me, no, stop, don’t go there, Bryan will do this or that. He didn’t. He felt my pain, he got it. We sat for a minute and held hands and I felt the onset of tears but managed to hold on. Years ago when I worked at my previous company we hired a young man to do some scanning work. Bryan was a baby or toddler and I had no idea where my life was headed. This young man was very awkward and clearly had some issues; he either had autism or tourrettes or both. We hired him and he was great at his job but people were very cautious around him since he behaved strangely. He liked  to sit in our mailroom and touch things and he didn’t socialize at all.  In retrospect I know I did not understand him and I too was a little uncomfortable in his presence. He did a great job but I can’t help feeling like it was some sort of cosmic foreshadowing. Ugh, the brain, shut this thing off!!!

It is so hard to truly explain these  emotions. But that “will he ever” feeling is not something that ever goes away. At times it gets buried under everyday nonsense. When it bubbles back up it always seems to catch me off guard. Or perhaps that is the  point;  I should not be focused on the  “will he ever” and keep my focus on today. However, as his mom I feel it is my job to keep the near and far always in my grasp. I guess it’s not possible to do both at the same time all of the time. I went to the Autism Speaks award dinner last night. This is where you get a little plaque for your fundraising activities. It is always nice to be recognized but more importantly it is good to connect with my peeps. I went with my friend Jen and it was so nice just to chat. We met a woman with a 31 year old son with autism and lives in a group home.  That is another thing that yanks at me. Group home? I know they are great and all but I don’t want to go there in my head or my heart. This is the thing about a child with a disability, any disability. The band-aid gets ripped off and the wound is exposed again. Time for a little antibiotic ointment and a new band-aid….But a bandaid unfortunately does not heal a broken heart.

Bryan and Earl are flying up north tomorrow and Bryan starts camp on Saturday. So to answer one “will he ever”, we can say yes, he can go to sleepaway camp and be responsible for himself and grow. I am filled with anxiety about him leaving. I keep thinking about last summer and that is very traumatic for me. For Bryan, however, he seems excited to go and he follows the rules and knows when he is going and when he is coming home. Next stop, visiting day. XXX

Hero Worship

When I was a kid my sister used to tell me I was adopted. Now of course adoption is great, but as a young kid hearing this from your sibling was traumatic. She used to tell me this, and various other things which I won’t say here since we have resolved our differences, to upset me or scare me or just be a big sister. Basically she said stuff because she could. I used to say, “but I look just like Mommy and Daddy.” Oh well. My Dad likes to celebrate father’s day in a bit of an unusual way. He likes to take us, meaning my sister and me, shopping. Yep, he likes to be the “sugar daddy” and have fun spoiling us. We are good daughters and always comply. We always tell him we want him to have a really really good father’s day so we will let him get us extra stuff. We are joking, mostly, but it is such a nice sentiment that I think I make jokes so I don’t feel guilty about getting spoiled on the day the spoilee wants to be the spoiler.

My Dad has always been a huge supporter of mine. I am lucky that he always empowered me and never made me feel like I couldn’t do something because I was a girl.  It’s a big deal if you are a woman, to be valued by the men in your life. My Dad, while totally loves his grandsons, always makes a point of letting me know that I am not second to them. I appreciate that every time he says it.  Daddy’s little girl will never get old to me.

Earl wanted to be a Dad since the beginning. He loves kids and if it were up to him we would’ve had more and adopted a few (including a 17 year old Swedish girl). He loves the chaos of kids and the fun of them. He is a warm and caring Dad. He is very affectionate and open with the boys and tells them what he thinks and feels about important topics, like religion, politics, and money. Although some of these things seem very mature for them to process; they will know in their heart that their Dad was always straight with them. Earl is an extremely honest person and treats me with respect. Good lessons for our boys.

I have learned over the years that although there are many support avenues for Moms of special needs kids, the fathers have it rough. Men don’t usually share too much emotionally, yet it is important for these “special dads” to have an outlet too. They need to be able to talk to people about how it feels to have a boy who looks just like you but can’t throw a ball or talk or function as a typical child. There is an element of ego involved and it’s very difficult.

This is the point where I think my husband is a superstar. He has no ego where Bryan is concerned. He loves and adores this boy with absolute joy, no self consciousness, no judgment, no sense of loss. Of course he is human and processes his feelings in his own way; but materially, viscerally, he is one hundred percent on board for his son. I am grateful and in awe. Happy Father’s Day.

‘Cause when life looks like easy street, there is danger at your door

There is no resting on your laurels around here. In two weeks the boys will go to sleepaway camp. What to do for the interim weeks, ugh. Let’s see, $250 per week for both boys to go to camp, plus our sitter because Bryan cannot hack the whole day, geez. Yesterday I went to work, busy day planned, half day meeting beginning at 8. I was cocky, I figured, hey I got this, two weeks of day camp, then off to sleepaway. At 11:30 I got “the call” from camp. Damn it. Bryan was really behaving badly and wanted to go home. Bad news: he was crying, hitting, kicking and not listening at all. Good news: I could talk him in off of the ledge and General Jason came to the rescue. I had to have my sitter pick them up an hour earlier, but all things being equal, not too bad. Last night I bribed him so he will stay the rest of the week. Desperate times call for desperate measures.

I thought I had this whole camp/before camp medicine thing resolved. Nope, another Act of Congress was required. Can’t get the meds filled for the next two weeks until I call 4 different places. Luckily I work at the greatest place on Earth and they were able to assist. The boys both get growth hormone meds. Another Act of Congress needed to get this done. Please remember I already did all of this in May. I am particularly fond of doing the same things over and over again.

I have to admit I was really looking forward to the boys going away. Not because I don’t love and adore them, but because it’s good for them and good for us to have a break. As it gets closer I am more and more reluctant to part with them. Why do things always seem like such a good idea when you plan them but when the time comes it seems like it was madness? I have anxiety about them going, particularly Bryan. I know what we are doing is good for him; he is a great camper and will learn so much. He needs to be forced out of his comfort zone to use more language, to mature, and to prep for Middle School. Earl is taking him up to camp. I think that will be easier for Bryan and certainly easier for me. He has been so yummy and affectionate the last few months, I don’t know how I will last without his squishy hugs and juicy kisses. I don’t even mind when he jams his chin into me. He does this to my arm, my face, neck, back, etc. I think it is some sensory need for deep pressure but it typically hurts a lot. He doesn’t pinch like he used to, it’s now more of a squeeze. Oh how I will miss those squeezes. Most people think we are dying to get a break from Bryan. We are not. Although some people may see him and think, how do you deal with it, his constant repeating, his inappropriate crazy laughing, his early mornings? We see a loving, handsome and delicious boy. We see progress, we see growth, we see and feel hope. We are at the beginning of some exciting stuff: 7 weeks of camp, middle school in August, Bar Mitzvah in February. I think I do need a pinch to make sure I’m not dreaming. These may be every day events for some; but for us each typical milestone he reaches feels like the peak of Mt. Everest. Looking forward to the next climb….

He ain’t heavy, he’s my brother

About 5 or 6 years ago a very close buddy of my cousin passed away suddenly from a massive heart attack. It was quite shocking and sad. I went to the funeral since I also knew him and his family and was struck by what his brother said when he got up to speak. He said “you walk your life with your siblings.” Sooo true. Who else in your life has that unique perspective on your family? Who else can you fight with, scream at, cry with, laugh with than your sibling? It is the craziest, best relationship in the world. My sister and I fought like cats and dogs as kids; something to do with the age difference, my parents, life and just our different personalities. Now she is my confidant, and the dearest friend ever!! I love laughing with her and she is not only a great sister, but an incredibly loving aunt to the boys.

I watch our boys play together all of the time. They are best buddies. They love each other, and kill each other all of the time. They go on our trampoline together, inevitably Jason is crying or screaming and Bryan is laughing. Bryan is “strong like bull” and Jason is a little guy. We all know how these things go. In the pool, one is always dunking the other one under or taking the other one’s goggles or boogie board or whatever. It the dysfunctional function of siblings. It drives me nuts and makes me smile all at the same time.

Bryan has a social group that is run by his speech therapist and OT. It is for an hour on Saturdays and there are 2 or 3 kids, including Bryan. Since Jason is always along for the ride, he sometimes participates as a helper for the group. Our speech therapist and OT love Jason and they do see the value of his assistance. Jason likes to feel important and needed and is a truly empathetic old soul. So yesterday I took Bryan to a regular speech session, one on one, that he has on Sundays. His teacher asked to speak to me about Jason. She said she was concerned when they were in group, because if Bryan could not answer or navigate the language needed, she said Jason seemed so worried and anxious about Bryan. OY!!!!!!!!!!! So now what can I say or do? She is so kind-hearted and loving and I know she was looking out for Jason. She is concerned about the emotional toll Bryan’s challenges take on him. I think this is something Jason and I have talked about before, and basically are always talking about. He cannot be responsible for Bryan. Easier said than done.

Their lives are coming to a crossroads. They will be separated for most of the summer at different sleepaway camps. They will see each other on visiting day and I am positive that will be nothing short of a tear filled love fest. Next year they will not be in school together and since middle school and elementary school are on different schedules, they will not be spending nearly the same amount of time together. I think this will be a good healthy change and necessary for both of them for the maturing process.

One thing is for sure, you cannot make brothers or sisters like each other. They take their cues from the parents, develop their own relationships, and have to work it out.  Like all relationships, it is constantly changing and evolving as they do. People often remark to us how mature and loving Jason is with respect to Bryan. We feel it too, but for him, this is what he knows, this is his part of the journey.

Happy and Peppy and Bursting with Love!

Favorite Odd Couple moment:

Oscar and Felix’s apartment. Felix and Gloria are getting remarried in the apartment.

Oscar and Murray are in the kitchen.

Murray: “Oscar, how come Gloria isn’t wearing white?”

Oscar: “Murray, she’s the mother of two children!”

Murray: “I guess it’s hard to keep things white with kids around.”

Humor is usually the thing I turn to when I am challenged or feeling overwhelmed. I am not challenged today. Today was Bryan’s fifth grade moving up ceremony aka graduation from Elementary school. Today for me, and for Earl and Jason, was one ass kicking goddman whoo hoo kind of day. Just the fact that he achieved enough to graduate would be enough to make us feel proud. But today, Bryan was more than a special needs boy, he was the main event. He got a super special award called the “Significant Strides” award from school. Our beloved autism coach, Caryl, told us he would be getting “an award” and she would be speaking about him. Sometimes when you anticipate things you are disappointed. That was not the case today. The speech, the presentation, the acknowledgement of our son and his accomplishments…well I think I might be at a loss for words, yikes! Ok, not really but it is hard to describe the emotions; pride, respect, admiration, love and not just for Bryan, but really all the people that touched his life and ours from this school.

A few small yet not small things will always linger in my mind about today:

Attendees!!! My parents, my sister, Earl’s mom and sister. So much love…so much “love cry”. I say love cry to the boys to distinguish sad tears from happy tears. Special shout out to those that may not have attended but had everything to do with Bryan’s success and support of us. You know who you are!!!!!

Bryan’s face. He smiled the whole time. He did not display any bad behavior and sat through the whole two hour ceremony. I kept looking over to him and was mesmerized at how well he behaved. He rocked it out.

On stage. He walked on stage to hear Caryl speak about him and smiled and stayed quiet. Don’t ever tell me these kids don’t know what’s going on. He was so happy and he was beaming. He looked incredibly handsome in his button down shirt and jeans.

Jason. When Bryan received his award Jason sobbed. He is so proud of his brother. That’s him, you can’t teach that.

Harmony. Typically when we have something important going on I am tense and anxious. Often times Earl and I will argue because I am so rigid about what I want for the kids or I am uptight about how things are going to go. This morning, everything went off without a hitch. I think we have learned a lot about each other. Earl knows to stay away from me and not interrupt my path, and I have learned that he will do things in his own way, but he will still get the job done.

The rain. We got married on a windswept rainy day in Nov of 1997. It was raining this morning. A good sign for us, maybe not the weather anyone else was hoping for.

Here is the clip from youtube:

http://www.youtube.com/watch?v=p4i-zFra_DM&feature=youtube_gdata_player

I think I may be going to Game Stop tonight!!!!!!!!!!!!!!!!!