Always two there are, no more no less. A master and an apprentice.

So I’m quoting Yoda. Does that make me a Star Wars geek? I guess maybe, but I’m really not, I just dig his quirky  little backward way of talking and his intonation. His sayings are clever and provocative. They make you smile just as you say them.  Star Wars has  a significant place in pop culture and I can respect that, for sure.yoda

I am forever the apprentice, never the master, particularly as it relates to Bryan. Recently I had a conversation with a case worker that assists in navigating benefits at work. This man is an Occupational Therapist by education and practice, but he is also a trusted advisor to me. I have been speaking with this man, approximately 2-3 times per year for the last 7 years. He knows all about Bryan, his challenges, his needs and his progress. Another example, for sure, that it truly takes a village to raise a kid with autism. So this man helps me to navigate the available benefits and based on our discussions and his probing, we talk about what Bryan may or may not need for the upcoming year and he translates that into credible recommendations for assistance. One of the benefits of this benefit (ha!) is that this man really tries to understand who Bryan is, although they have not and will not meet, and tries to understand my philosophy in parenting Bryan. He can gauge progress by asking pointed questions the answers which reveal  growth or deficiencies. He forces me to not only think about what we are focusing on now, but the 3-5 year look ahead. Both are necessary and practical, yet stir emotions. Bryan will be 17 this month (there must be a math error) and it’s exciting to see what he can do now and where he can go. So I was describing to this man all of the independent functioning Bryan is doing and all of the great things he can do at home, at school etc. However, and this is the great part, there is always more. Always more to be done, always more to implement, always more to learn. He made two great suggestions. He knows Bryan is very visual, as are many kids on the spectrum, and I told him that Bryan likes a written schedule and also loves his phone and ipad. He suggested we add all of his plans on a google calendar. Duh, I use it all of the time, why didn’t I think of that??? Bryan will love that. So easy, so simple, yet so smart.

Another thing he and I talked about was Bryan’s use of money. At school he has personal finance aka math and he loves it. My caseworker suggested getting Bryan a prepaid debit card so he could pay for things and learn how to use the debit/credit machines. Another fantastic idea, all geared toward independence. My most favorite thing about talking to people who work with or are parents of kids on the spectrum are just these little tidbits we can share. It’s never the big things; we don’t miss those, but those small incremental wins are so fruitful. The student, grasshopper, apprentice in me is awakened by these suggestions and now I’m focused again on the possibilities. Bryan came home from school a few weeks ago and told me he is now going to FAU on Thursdays, “with the big kids”. He was very proud of himself and I knew based on his sense of urgency that the school told  him to make sure he told me. It’s not the rate of progress that matters, only the direction. So much behind us, yet so far ahead. Two weeks we went to Disney, a request by Bryan in celebration of his upcoming birthday. I like Disney but have been there many many times (incidental benefit of Florida residency) and he used to have tremendous anxiety there, even though he loves it. He was not anxious at all. He was over the moon. Jason and I shared a few quick “look how happy he is” moments when observing Bryan. So we decided to go on the Speedway at the Magic Kingdom. You know, those seriously old cars on a metal track. Jason went on his own and I went with Bryan. In my head I really wanted to see how he could navigate the car. He was fine with the driving part, as I knew he would be, but he was so distracted by people; nope not ready for real driving  yet. Years ago I would have panicked that this means he won’t be able to drive. Now I know it just means he will not be driving anytime soon because he’s not mature enough to focus on the road without the distractions. Bryan’s sheer presence reminds me that there is always plenty to learn if you are willing to be a student.

 

Have courage and be kind….

cinderellaThere is truly no end to negativity surrounding people with disabilities. When it is your child, no matter how many times you encounter new people and their reactions to your kid, you feel like you were hit with a brick. Sometimes I shake my head and think, are people really that out of touch? Are people really that insensitive or ignorant? I try to give everyone the benefit of the doubt; maybe they don’t know much about autism, maybe they have not experienced it first hand. Here’s what I do know:  you do not have to have something first hand to be kind. We just saw the new Cinderella movie on Friday. I will admit I was the only mom with teenage and pre-teenage boys in the theater, but Bryan loves all movies and Jason is a good sport. It was pretty good for an old story, (Lauren Henschel-the actress looks very much like you do but not as pretty) and the mom’s message, before she dies (all moms die in Disney movies) is to have courage and  be kind.This may now be my new mantra. I have always been a fierce protector of Bryan but having courage is a good one. I do have the courage to speak up for my boy, to educate, raise awareness, and let people know what is and what is not ok.

Here are some simple rules, as I see them, when faced with the unfamiliar autism spectrum disorder.

1. Do not judge my parenting skills. You have no idea how you will behave if you have not slept well in days and your large teenage kid is screaming and pinching you and his sibling.

2.  Do not judge his future. You have no idea how smart he is, what he is capable of, or where he will land. If you do, call Diane Sawyer and get your ass on TV as a genius.

3. Do not judge him by his disorder, open your mind to his charm. He is not the bad behaviors, that is only a component of him, I guarantee he is 10x smarter than you can ever imagine and is sweeter than sugar.

4. Do not judge his communication skills as the barometer of his level of understanding. Receptive learning is much easier than speaking.

Since I try to learn from every situation, I have learned this. I love autism! It pushes me beyond my comfort zone as a person, it challenges me every day to dig deeper, to learn, to grow and to push. I am where I am in my life not in spite of it but because of it. I know who I want to be with and how I want to handle myself. Thank you Bryan for teaching me the ultimate you can’t judge a book by its cover.

So I say to all of my peeps out there if you can’t have courage to deal with autism, at least be kind to the parents.

2014; brought to you by the letter D.

the-meaning-of-DTomorrow is December 1. The year is almost over. 2014 will be memorable for many reasons, not the least of which is that this is the year Earl and I get divorced. Our hearing is on Dec 16 and then we will be divorced. We are still living together for now and that is a function of circumstances. That D has certainly forced reflection on other D words. The despair you feel in going through a divorce, no matter the circumstances, is ever-present. Fortunately, we are focused on being amicable, if not for our own sanity, but for the sanity of our boys. People are constantly asking me, “how are the boys doing?”. To be truthful, I’m not sure. I have no benchmark, no sense of this, I’ve never had to deal first hand with divorce. Earl’s dad died at a young age, but his folks were still married, and my folks will be married 57 years in January. So basically my response is that I don’t really know yet, too soon to tell. I am a student of all things children related and I have been researching how to minimize the deep impact the divorce will have on the children. I have positive and negative examples all around me. The definitive thing, I’m finding is, how you and your soon to be ex-spouse relate. Model respect and good behavior. Do as I do, not as I say. Jason asks questions and I try to be as honest as appropriate. I tell him we love each other, but our family will be different. Bryan, however, asks nothing. This is alarming. Bryan knows all. He was the one standing outside the rooms when we were arguing, talking, and deciding. Bryan, like many kids with autism, is great receptively. He understands everything he hears. So how do I navigate Bryan on this unfamiliar course? How do I let him know none of this is his fault, if anything, autism bonded us, not the other way around. How do I answer the unasked questions? I have been trying to take the opportunities that present themselves. If we are alone, driving to speech, I tell him the custody arrangement. I tell him slowly and carefully. At night when he goes to bed I remind him that he is loved and precious, and in no way should he feel disregarded. It’s tough. Although he does not say much, he does say “we’re getting divorced.” It’s true, it’s not just Earl and me, it’s all of us. When he says that, it’s like taking a dagger; however, he does need to be able to say it. Bryan needs to be given the language for the situation. He certainly knows the concepts but what to say and how to express it are very challenging for him. He has not been sleeping well. Typically Bryan passes out or announces he’s going to bed, but lately he has been up “exploring his body” oy, and just feeling anxious. Puberty plus autism plus divorce equals delirium for the rest of us. I can’t think of the last good, fitful night of rest. Friday night he wouldn’t go to bed until after 11 and then was up since 3 am. He is not quiet, he is never quiet. He knows he is upsetting us, irritating us, driving us a little nuts. I feel for him; he can’t just say what he needs or wants to. At times I feel defeated, down, depressed. The “D”s of my 2014.

There is always another letter and another year. Looking for my “E” in 2015;to work on feeling empowered and energized.

Piece of Mind

No it’s not a grammatical mistake. I was driving this morning and heard Peace of Mind by Boston. That is way too big of a goal for me right now, so let’s go with the piece of mind. That, perhaps, is attainable. If anyone is reading this, here is a newsflash. People with Autism are people. They understand what you say, they have feelings, and the know right from wrong. Do you blatantly insult typical people? Do you not understand that just because someone doesn’t say, “you hurt my feelings” that their feelings aren’t hurt?autismmom
Bryan is 14 and I still have to shout out to the world that receptively the kid knows everything. He knows, he understands, he feels. Can you imagine someone hurting your feelings and you literally cannot organize your thoughts well enough to say something? Can you imagine being my kid and not being able to stand up for yourself. One of the things I like best about myself, which is also the thing I like least about myself is that I’m not a pushover. If it bothers me, I will address it. I have learned over the years how to temper these feelings, and address issues when appropriate, but I am nobody’s wallflower. If you know me, you know this. Enough about me and my nonsense. But, to insult my boy, well now you are amping this up to another level, and it is all I can do today to contain myself. It is not one person or one thing alone, but the sheer frustration that after all the years of dealing with this, it is still something I must contend with from people who know us. UGH
You have to know your kids. I know Bryan. He does not have a mean bone in his body. I am not one of those parents that walks around with their head up their ass thinking their kids are perfect. Nobody is perfect and that’s a good thing. Perfect is boring. In any event, Bryan is a super good kid. He is very sweet and loving and typically is able to relate to most people in some way or another. He has no venom, no ill will, nada. Why do people confuse inappropriate behavior or autism like behavior with malice? If it seems a little like I’m stamping my feet while I’m writing this, well, I am. Would you hold it against someone who is ill if they moaned or complained or cried?
Ok I will stop venting. Acceptance has to change as he changes. If you love him you and want him to do well you need to keep at it, you can’t expect a 14 year old Bryan to respond to the same things an 8 year old Bryan did. Would you expect this from any other kid? Lots of rhetorical questions today. Lots of pieces of my mind all floating around and I can’t seem to grab onto any and make the noise stop.

Nice try, Mom

I have not blogged in a very long time. I suppose it’s a combination of distraction, lack of focus, lack of material worth blogging about. I think on some level the need to share about Bryan has slowed down. Some of the issues that we faced when he was younger, the constant worry, craziness and delirium which is autism has not gone away but has diminished in some ways. Bryan just got home from his 3rd year at Camp LeeMar. He goes for 7 weeks and this year he was in the “seniors” group. How is my boy in the senior of anything? To translate, at LeeMar this means he is in a cabin and not in the main building, which is like a dorm. A cabin, with AC. Yikes. At this camp they do all of the things typical kids do at camp but they also have academics and speech. Kind of the best of both worlds. He came home tall and thin. When he was away I was not really thinking about autism too much. I don’t really think of him in those terms anymore, it’s almost like it doesn’t fit exactly right. When I think of Bryan and his autism,  I think of the 7-9 year old Bryan pinching,  screaming and not really communicating effectively. I had a shock to the system last Saturday. I went to the open house for a music program for special  needs kids at the School of Rock. I am a huge supporter of this program and participated in some of the planning for the new curriculum. The folks there are so eager to work with our kids and to make the program a success; which I know it will be. There was a young man  at the open house who is a little older than Bryan and I have known for years through Parkland Buddy Sports. He was sitting on a chair and his behaviors, talking a little to himself, his mannerisms, all of a sudden I felt like I was hit with a brick. OMG,  Bryan is coming home and he still has autism. If you are not an autism parent you will think I’m insane. What do you mean he still has autism? It’s not like I ever thought it went away, but when  I think of him I don’t think about autism. I just think about Bryan. They are not separable in reality but they are separable in my heart. The only analogy I can make is that when I think about Jason, I think about him and his personality,not any of his “behaviors”.  So sitting at this meeting it just jolted me to the fact that Bryan is coming home and I will now be back in my world of friends, supporters and community which is autism. It’s not a bad thing at all, just a reality check. 

Bryan is doing great. He communicates pretty well now and can have a fairly decent conversation. I would say the toughest day to day challenge is getting him  to stop repeating things over and over and calming his anxiety. Piece of cake! The maturity, the coping skills have increased dramatically. Yesterday was a huge day. We went bowling after lunch,Bryan, Jason and me. I have taken the week off from work to spend time with them and it’s been a treat for me. If you are a full  time working Mom, which I am, a staycation with the boys is like a bouquet of roses, each day a different one blooms and shows you something beautiful, and expensive!!! Ok, back to the bowling. I am not a dopey mom. I know the only reason they are going bowling is to get to the arcade when we are finished. No bowling, no arcade! We agree to bowl one game (if you are wondering why take them at all, you have never spent a summer in South Florida where it’s 100 degrees plus 100% humidity). I am the 3rd bowler and after each of us go, we say things like “good one”, “nice one” and then Bryan says “Nice try, Mom”. So appropriate. I have that warm feeling inside knowing that he is with us, in the moment, participating. Jason and I share our secret knowing smile when we acknowledge a “Bryan thing”.

We left bowling and went to Publix. We came home and went to middle school orientation for Jason. I could write 3 blogs about that. We went to each of his new classes and by the 3rd period both Jason and I started to relax. We didn’t realize that were going to go meet each teacher and essentially follow his schedule. Bryan was not happy; he didn’t know either that we were going to do this and the unexpected plan was a little tricky for him to navigate. The 12 year old Bryan could never have handled this but the 14 year old Bryan was able to hold it together. It almost went south a few times but he has better coping skills now. He also recognized that it was an important time for Jason and quite honestly, that means the most. 

Jason never ceases to amaze me. He never once suggested Bryan should  stay home even though he knew it could be tough for Bryan or potentially embarrassing. Only once or twice did Jason say to me, please ask Bryan to be quiet. Jason’s true and pure acceptance of Bryan for who he is represents one of the best parts of my life.

I am easing my way back into blogging, autism and all things middle school. Note to self: after school supply shopping pick up a new bottle of Citron Vodka.

I’ll take Jack Black movies for $200 please Alex.

I have watched School of Rock at a minimum twenty times. I am not exaggerating. It’s a great movie, love the music, the whole vibe. I like Jack Black, mostly, he is great in this movie. Bryan gets on a thing, a movie, tv show, song and he must watch it or hear it over and over and over. I have read many articles, books, etc. about why kids with autism do this, but to me, I think it’s just comfort. There is something comforting in what is familiar. The constant rewinding, well that’s still a tough one. Sometimes I think that Bryan does this because he wants to memorize what they are saying so he can have something to say. Sometimes I think he does this because he needs the repetition to really understand something. Bryan also loves music so at times I think he is just trying to learn songs. After watching School of Rock he loves to use his ipad to find the music videos of the songs and play them with the words. This is learning, yes? So today on World Autism Awareness Day, I will more than likely watch some part of School of Rock. Bryan loves for me to say the lines, we do the Jack Black handshake and we giggle. I guess it’s some form of relating with Mom that doesn’t require the mental toughness of asking and answering questions. While I’m typing he just came over and asked me “We can watch School of Rock? From the beginning?” I try to negotiate with him to start in the middle so I get to see the end because often I fall asleep before the end. I dread the idea of watching it, yet the snuggly, happy Bryan always wins me over.
I am humbled by autism. I can’t get over the 1 in 68 and 1 in 42 boys. The best odds I ever had at winning were autism, go figure. Must be some f-d up birthday wish. “I said I want to win the lotto, not turn blotto”. Yikes. Autism is a phenomenon. While it forces an impossible struggle in the day to day lives of families, it enables the best of mankind. A day hardly goes by where I don’t have a connection with some new person or distant person because of this disorder. I posted on facebook a question about autism meds earlier this week and some people responded to me publicly or privately that I never even knew had this in their lives. Someone took time out of their busy day to give me a little piece of knowledge. Those little pieces hold the keys to my heart.They propel me in a way that’s hard to describe. My friend Karen explained how she uses essential oils for her daughter. I had never really considered this for Bryan. Whether I go down that road or not, just exercising my brain in that direction will help me to help Bryan. Thinking is a very underrated activity. We must all think about our kids. I do not want to solve the puzzle of Bryan. To me, I want to reverse engineer him to find out he processes things, why do things come out differently for him than for me? Would something as pure and simple as a scent rubbed on the nape of his neck draw him closer to me? We all associate scents with times in our lives and they are meaningful. I treasure the fact that I can still smell my grandfather in my mind. We say mind’s eye, can’t we say mind’s nose? I smell cinnamon and I immediately think about how much my mom loves that smell. If I smell chocolate pudding the image of my mom stirring it in a small metal pot immediately rushes in. So today, on World Autism Awareness Day I am going to be aware. Aware that autism may be the biggest challenge ever, but it is also the greatest gift.
Let’s Get Rocking!!!

Throwing the BS flag

One of the guys I work with always says “I’m going to have to throw the BS flag on that” for a comment or a statement that he thinks is BS. He’s a big sports enthusiast and coach of his son’s baseball and basketball teams so he uses sports type references all of the time. I like this expression and have adopted it. So recently there was an article in the NY Times and a piece on Good Morning America about parents of an adult with autism that used Disney movies and characters as a way to get their son with autism (nope, still not saying autistic) to speak and have conversation. So a little bit I need to throw the BS flag. I am not discounting what these people said or did or their success. Since this young man is now 22, who knows if what he had was not really autism at all. He might have had seizure disorder or something else. The criteria for autism or autism spectrum disorder is different today than it was then. I am not here to judge what another family does to work with their child. After all, these kids come with no instructions, protocol, treatment path, nada. There is no roadmap, damn we are all Christopher Columbus with 3 boats and no captains. However, where I get concerned and where I need to say “please hold” before you all go out and order the 27 dvd box set from Disney is that every kid or each kid with autism is completely different. This is more than just a casual remark; it is profound and it is one of the factors that differentiates autism from other disorders. The quantifiable info just can’t exist. We have 3 other families that we know very well. When we all used to spend time together there were at least 6 kids with autism among us. We practically had the whole spectrum there; a literal Venn diagram of delay disorders. So while I don’t want to throw the BS flag at this family per se, but at the whole, I throw it at the this will work for you too. Not that it isn’t a good idea, but I just feel caught in the chasm between what is good and well-intentioned and what is the cure. Perhaps I am coming off negative. I know it’s a good idea to publicize. I know it’s a good idea to try new things. But I guess more than anything I am of the mindset, if anything looks too good to be true, it probably is and some of these things, methods, fixes just seem to give people the wrong impression. Admittedly, I am biased but I still feel like a disclaimer of sort needs to appear on all of these new stories, not unlike when they advertise meds. This worked for X but may not work for you. Or, this may cause other side effects such as X or Y. I also throw it at the people who say their child has autism but doesn’t. Yes, Jenny McCarthy I am talking to you.
However, I am not cold-hearted and do appreciate the triumph of this family and this young man. It is fabulous to see a kid on the spectrum find his voice, literally and figuratively. I am also extremely happy as a parent that they can find a way to communicate with their child. I think it is essential that we remain open to new ideas, just not to cling to them like they are a magic pill. If you have a kid with autism and you are still waiting for the magic pill, stop on your way home to buy a lottery ticket to pay your bills. Same reasoning. It could happen, but really, what are the odds?