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.

 

Crank it up!

Science question: You’re driving and you have the music on; something good and loud, like the Who, We Don’t Get Fooled Again, what is the decibel level required to drown out the voices in your head? This is not rhetorical people; I need the info. Over the last week so many f-ed up things have occurred that I truly believe only a heartfelt, drug inspired 70’s real rock song could block out the noise. You know something you can crank up and sing because you know all of the words and although you know your voice stinks, it completely doesn’t matter. It also doesn’t matter that your windows are down and sunroof is open, you need to let it out. Feel free to substitute any song you like; I just happen to love the Who and the righteous, guttural way Roger Daltrey belts them out. I always see him in my mind’s eye as Tommy  in those jeans and shirtless, with the long curls,  singing his heart out(just to me of course) and well, that definitely helps get the adrenaline flowing. tommySo….please feel free to email me, text me, IM, twitter, instagram, snap chat, call or snail mail me the answer. I need it. You see I drove to work this morning and no matter how loud I made it and how loud I sang, no dice. Still couldn’t block out the noise in my head. You know something is pretty messed up when your kid says, “you probably shouldn’t blog about this one if you know what I mean”. I do. The actual event or events are not always the hardest part to fathom, but the processing, the clean up of the carnage, well that’s where the real work gets done. The carnage here was bloody and messy and no amount of mopping seemed to do the trick.

It’s  fair to say that you really can’t control most things that happen in your life. As those of us know who have been through therapy and/or are introspective in any way, you know that you can only control your own responses to what happens in life and choose the way you want to handle the damage control. These things are always easier said than done, and emotions have a way of clouding judgment.  What happens when things are unfolding before you and you think to yourself, um, why is this happening and now what the hell am I going to do? How does this get corrected? When things occur and the boys are impacted, I feel like I want to shout out “cut, let’s try this one again”.  When things are going on right in front of you and you are processing them it is not easy to step outside of yourself and say, “hmm, how am I going to handle this situation so my children are not damaged, hurt or angry.” These questions are rhetorical. I was meeting with some folks from my Leadership Broward group yesterday (#LB35 #highfive) and one of the team members is gay and he was discussing the parenting classes he and his husband have to take to adopt a child. Parenting classes? What is this thing you speak of my friend? My mind wandered to a place where I thought, shouldn’t basic parenting classes be required for everyone? Shouldn’t basic human decency classes exist? I guess those things are left up to your parents if you have kids the old fashioned way. In light of the events of my weekend, I was definitely more focused on this topic than I typically would have been. Maybe my personal sensitivity to the challenges of parenting this weekend cast a brighter light on our conversation.

It is my opinion that success, in any form, is not only the result of hard work and a little luck but overcoming some obstacle or plowing through some roadblock. People who have it too easy have nothing to grind against, nothing to strive for that requires the type of deep soul searching and tenacity that propels a breakthrough. I feel this way about innovation and technology, the problem solving aspect, but also the resolve. If I didn’t have autism in my life, I would not have learned what I am capable of. I love when people tell me how much patience I have. I think, “are you talking about me?” I spent the first half of my life so impatient and wound up. I do have a lot of patience now, but it didn’t come from anything natural, it came from survival and for the sheer need and desire to be the parent Bryan needed me to be. How could I face my beautiful boy if I couldn’t be kind and patient with him? (Believe me I have fallen off that wagon a million times, and many of you out there have witnessed it).  Autism is a disorder not a behavior. Would you lose patience if your kid was puking, well maybe that’s a bad example, but you know what I mean. An invisible disorder is still a disorder and needs to be treated accordingly.  I’m still a work in progress, for sure. So by now you may be wondering, why are we talking about success and overcoming obstacles when we were just talking about cleaning up an emotional mess?  The thing I guess I’m grappling with is how much is ok for our kids to have to deal with? How much shielding is good, how much is overprotective? Where are the lines drawn and who has the damn manual? Can I get it on my kindle? These questions in my head just beg for seriously loud music.

 

He’s got the moves like Jagger!

I’m doing it. You may unfriend me, unfollow me, dislike me, but I’m risking it. No, this is not a political post. It’s something way way way more important. It’s a bragging post, not about me, but about Bryan. Today was the day for parent/teacher conferences at Bryan’s school. He goes to a great private school that serves the neurodiverse community ages 14-22. Bryan is 16.  Last year was his first year and the first year after our divorce. To say he had a rocky start is the ultimate understatement. You know when the headmaster calls you more than 3x a week you are screwed. It was such a reach for him, I really wasn’t sure he could hack it. It took him the whole year but he did a good job and by the end he adjusted.proud

Well, this year, he has completely turned things around. Once a week they go to Florida Atlantic University (FAU) for the day to learn how to behave on a college campus as well as how to interact appropriately. Bryan loves it. He loves to go to the school cafeteria!!! So today, when I met with the teacher who takes him there, she said “Bryan is a rock star at FAU. I am thinking about moving him to the harder class that goes there or sending him twice a week.” Um yay and double yay.  Bryan has always expressed an interest in going to college, and I bet he will. You can never,  ever, ever count out a kid with autism. The surprises, both good and bad, well they never end. Of course I was elated, of course I was proud of him, but more than that, I felt so incredibly hopeful for his future. I met with 3 more teachers, math and language arts,  and then the teacher that does yoga with him and takes him to his part time job at Simply Yoga. This great program at school takes kids into the community for jobs. He is so proud of his job. He folds the mats and blankets, he puts the clothes on display and sweeps. A very typical teenage job!! The teacher told me that Bryan takes on a complete professional persona at the job. I’m kvelling!!! A professional persona!! What? Can you fathom the awesomeness of that? My loud Bryan, who is almost never quiet and has so much trouble modulating his voice, has a professional persona! They also do yoga at school to help stay calm. She told me not only does Bryan do the yoga, and stay quiet, he sometimes leads the class in a few of the poses. If I was not so over the moon,  so completely thrilled, I might have thrown the BS flag at them. Don’t get me wrong, I have been getting reports since school started that he is doing well,  but to go from teacher to teacher to hear in their words how well he is doing with tangible examples, it just fills my heart with so much joy, so much love for him. I came home and told him how excited and happy I was to hear all of his teachers talk so highly of him. Bryan, smart as he is, says, can we get movie tickets? Of course I said yes. I think I would’ve said yes to almost anything.

So by now, if you are still reading, you are either really excited too, or getting a headache from how upbeat I am. Here’s the thing. When your kid has autism, you spend most of your school meetings holding on to the table to brace yourself for the bad news. You brace yourself for the bad school calls and to hear that your 12 year old is reading on a first grade level. You also know that you must enjoy every triumph because things can change at any moment. The lows are very low, but the highs are sweet as sugar.

 

 

Gut check.

IMG_1514This week has been filled with lots of phone calls with friends dealing with all sorts of medical and behavioral issues with their kids. I love to brainstorm with my friends for their kids and I am grateful when they do the same for me. One theme over the years that keeps surfacing is the conflict between what an expert or so called expert tells you and reality. Growing up I always revered medical professionals and really professionals of all types as the ones who were in the know. I could not as a kid or even a young adult think that someone with a real degree, accomplished, could be wrong or not qualified to give an opinion, diagnosis, strategy. Autism. Once you hear that word, it’s a crap-shoot. This is not exactly a newsflash but I feel there is a really important lesson here that needs to be explored. And, it’s not limited to autism. Any medical/behavioral issue that your kid is facing has the potential to make you question everything.

So you take your kid to a doctor, a specialist, a clinician, a therapist. This person is often highly recommended by someone you trust, or they are referred to you for something so foreign to you, that any recommendation feels like a life-preserver. The problem is, they only get a glimpse of what you are dealing with or what you see on a day-to-day basis. We have been to many of these types of appointments for both boys over the years. The problem is that as a parent, and now I may take some flak for this, as the mom, somewhere in between your brain, heart and gut things seem off.  I love examples, so here goes:

  • You go to the psychologist to deal with behavioral issues. For Bryan it can be the constant anxiety and talking. He is forever asking “are you happy?” and says Mom about a thousand times an hour. Psychologist says, I think you will have to start ignoring him. Sounds like an easy fix, right? Just let the kid talk and go about your business, after a while, he will stop if you are not paying attention to him. Oh ok, doc. Here is my response: we have a guest room, please come stay the weekend and show me how you would display this ignoring behavior. Or better yet, come and just spend the evening, I super duper triple dare you. I say it can be done for a short time, but no one can sustain that kind of ignoring.  So while very good and easy clinical advice, the practical application is far from practical.
  • You decide to get a second opinion. It’s something important, something that is nagging at you that you want to have double checked. Typically this could involve a neurologist, a psychiatrist, some sort of MD. You go for peace of mind but you leave with very few pieces of your mind. They want more tests some invasive, some not so much, and they completely discount the previous doctors diagnosis/thoughts. What do you do? Where is the quarterback for your  team telling you how to run this play? What’s the next move? Was the previous doctor an idiot? How do you know?
  • You decide to come up with some strategy to help you cope with a bad behavior. You know it may only be a band-aid, but band-aids are a pretty reliable product. You speak to a clinician who tells you that this is going to help you now, but may be more of a problem later. You shake your head and again invite this person to spend the weekend.

So really, what’s the point of this? Why am I telling you about this stuff? I’m going to tell you. You, the parent, the mom, you are the one who knows. Trust your gut!! Trust the parent/mommy instincts that got you this far. If something a professional tells you sounds too theoretical, too impractical, too difficult, say thanks and move on. We all expect too much. As a parent of a child with autism they want you to come home after work, spend quality time with your kid practicing use of language, do some sensory exercises and, oh yeah, my personal favorite, limit their use of electronics. All day long the kid was receiving behavioral incentives in the form of electronics and then you get home and tell him he can only use it for 30 mins. Good f-g luck to you. The point is being a parent is a lot more about loving and accepting your kid, in my opinion, than being his or her doctor, therapist, etc. Your kid is just happy to have your attention, being together and just sharing any activity is more important than the activity itself. I find my boys are really happy when we are driving. They know that I Iove my  new car and I find if I am singing, yes singing, they know I’m happy. Jason will spontaneously say,”Mom I love you” when he hears me singing. It’s not because I have a great voice, it’s just that he can hear the happiness.

So for some of the heavy duty medical stuff, I say get a few opinions but remember they don’t know all. Anyone that is dismissive of your opinion or condescending needs to be called out on it or immediately discounted. Remember anyone can go to school to learn something, but no one knows your kid better than you.

How low can you go?

neverapologizeAll you people who typically read my blog and reach out to support me, yep I’m talking to you. I need you now. Autism sucks. Yep it does and it keeps on sucking in new and improved ways. A few times over the last few weeks we have gotten calls from Bryan’s new school that he has been physical with staff members. Mostly we have been able to get him to calm down or at least get him through the day. He was picked up once before and it was not good. Today I got a call to come get him. He had to leave, no trying to get him to stay. He tried to bite his teacher and was trying to kick her. Have you seen him lately? He’s big, he’s 5’7″ plus (and not the fake 5’7″ that so many people say they are but are not) and at least 170 lbs. He is broad-shouldered and extremely strong. I had to go get him. I was having a tough morning anyway, I’ve been a bit off of my game lately personally and this just pushed me right over the edge.  We already went once to the shrink to get his meds adjusted but it looks like that’s on the agenda for today too. When I asked him what happened he really is not capable of telling me or at least not capable of telling me now. He is too upset, knows he did wrong and is too anxious. He has trouble expressing complex emotions.  He can tell me he’s sad or happy but to explain what set him off and why he lost control, well that won’t be vocalized any time soon. He will be able to give me info or clues later, but they will not be timely. I felt like such a piece of crap going to get him and listening to them tell me how he tried to attack his teacher. When I saw him I wanted to hug him and kiss him and I also wanted to smack him in the head. Some combo of love and forgiveness mixed with frustration and anguish. As with most autism “things” there is no easy way out, no magic  pill, no “can’t you just”. It has never worked that way and never will. My heart is broken. A child’s pain lives in his mother’s heart. I know I will have to dig deeper, try harder, persevere. I signed up for it and I am not a quitter. The hard part is that my emotions are very raw right now and emotions and action can be diametrically opposed. Why does it seem that stuff happens all at the same time? Why does it always seem like just when the dust is settling and you can see the rainbow the rain starts up again?

We went to the doctor. We have a game plan for now which involves going back to a previous medicine that seemed to hold the aggression back. It’s all trial and error. I feel particularly bad because today is Jason’s birthday and although I have a fudge cake for him, we are not going to be able to go out to dinner and celebrate. It’s best for us to just have a quiet evening in. Jason, now a teenager, knows what happened today and has taken it all in stride. He is so happy for the cake, the cards, and the # 13 balloons I got him last night to surprise him. I think I wanted to get balloons to think I still have a little kid in the house. I was excited last week when he told me he lost a tooth. Yay, still has some baby teeth. I asked him if he put the tooth under his pillow at his Dad’s house for the tooth fairy. He said, “the tooth fairy is bullshit.”.  Yep, he’s 13. I was surprised he didn’t hustle me for  money however. For now, pizza and birthday fudge cake sound just perfect.prescription