By way of example…

How do you really explain what it’s like to live with and parent a kid with autism? As you know, if you read my blogs and if you have a kid with autism in your life, it is not easy to explain. I often get questions like ,”does he understand ….?”, “is he high functioning(whatever that means)?” “how does he express himself?”  So I decided rather than try to describe what it’s like I thought giving every day examples might be more illustrative. Of course Bryan is one kid with autism and his presents itself in its own unique way. One thing that I have always found interesting are the growth spurts. Not height but functioning. It never seems that one thing happens, but rather a cluster of good behavior, a cluster of good language, or a cluster of independence.

Here goes with the examples, I divided them into categories to keep my train of thought more organized:

Language-When we were getting ready to go to Disney, I talked to Bryan about the rules for the trip. He does well when he knows the rules and I guess managing expectations really works well for everyone. I told him there are 3 rules: 1. No hurting Jason or me, 2. No screaming-side note-Bryan’s most favorite thing to scream is “I love you”. That poses a huge challenge-do you want to say please stop telling me I love you? No but at a lower decibel would certainly be appreciated. Ok and finally, and most importantly to manage anxiety, 3. You do not have to go on any rides you don’t want to. The last one, while conceptually easy for him, from a language standpoint was very tricky. You see, I ask him to tell me the rules, the first two are very easy for him to repeat back. The third one presents all sorts of pitfalls. He has to get the order of things correct and the pronouns, etc. It usually ended up as “If I don’t have to go if I don’t want to on a ride” or some sort of jumbled up version. Hmmm, what am I an amateur here? This needs simplification. The replacement I gave him was “I can choose my rides” or “I don’t have to go on any rides.” Much better, much easier and less stressful for him when I pose the question. It’s more important he understands the concepts, but I do like to know he can articulate them too.

Also with language there are triumphs, while on the outside looking in may appear so small, so insignificant, yet are so huge when language deficits are present. Last night Bryan said he wanted to take a bath. I said “ok, are you going in my bath?” He said, “no I like my bath better than yours”. OMG I had never heard such a thing before. He made a true comparison and used the right language to do so. I almost called his speech therapist but then more kept coming out. He was putting away his laundry and he found some underwear in the pile that belonged to Jason. He took the underwear and went into Jason’s room and said, “Hi Jason, these underwear are yours, not mine, put them away Jason” (ok he’s a little bossy, where does that come from?) Another great use of language. So small, yet so great. I was in our laundry room and folding more laundry and just peeked around the corner to catch Jason’s eye. He gave me that twinkly knowing glance; the one that let’s me know he loves Bryan too and gets it.

Today I was driving with Bryan home from seeing my mom. I was really tired today and a little irritable. Bryan had been sort of bugging me with lots or repeating language and he knew he was making things worse. It’s tough because the more upset I am or annoyed the more anxious he gets which leads to more frustration for both of us. So we left my mom’s place and we were driving home. Bryan said ” I feel overwhelmed”. NEVER have I heard anything like that. I asked why he was overwhelmed and he said because you’re upset with  me. So I thought to myself that I was never so happy to be annoying him if annoying him revealed such a great use of language. However, I did feel like crap that I was stressing him out. We drove a little further and then he said “what is autism?” At this point, I looked at him and said “why are you asking this Bryan? What do you think it is?” He said “I think it’s when I laugh too much.” Not really a wrong answer. Bryan is known for seriously inappropriate laughter. If Jason is mad or I’m angry he starts to giggle. And then starts to really laugh. Sometimes it’s good and makes us laugh too sometimes it’s maddening. I then explained a lot of stuff to him about what I thought autism is, but truly his definition was pretty damn close.

Independence-On any typical day, Bryan will unload the dishwasher. When they are home with me we have to run it practically every day. When they are at camp for 6 or 7 weeks I think I ran it twice! However, the level of effort Bryan puts in is amazing. Last night he loaded dishes from the sink into the dishwasher and went to put the soap in. He brought the almost empty container and said, ” we have no more dishwasher soap.” I told him we did and that it was in a green container and he proceeded to put the soap in and then take the old container out to recycling. He then emptied our kitchen garbage, replaced it with a new bag and took out the rest of the recycling. All of this was done properly, and without my asking. He then made his lunch and yelled at Jason to take his lunchbox out of his backpack and for Jason to clean the litter pan. I had already asked Jason to do this about 3x. It’s almost hilarious, but it is so truly joyful to watch him do these tasks so freely, effortlessly and with great pride. love.

Behavior-I think this may be the hardest category to show examples of that will resonate. If you can imagine that your kid truly cannot be quiet and that will drive you insane, even though you know language is so important. It used to be I could ask Bryan to be quiet for a few minutes and he would last about 3, then about 5, then about 7. We are up to about 10. I  bet you are thinking this is nuts, but it really is just the nature of the situation. To live with someone who is constantly talking and talking about stuff from 3 years ago or stuff that is so out there, you can get frustrated. He will tell you things like “I said something mean to grandpa 4 years ago” out of nowhere. Or so and so is old or so and so was mad at me on Sept 28. The good is the control we are now seeing to be quiet when needed and to reel it in.

Just a bunch of examples to let you peek through our window!

 

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.

 

Good Feelings Gone

nemoYou know that scene in Finding Nemo where Marlin and Dory are swimming and are feeling happy. On their quest to find Nemo they encounter various sea creatures and obstacles, but at this moment happiness abounds.  They are circling around and gently gliding along, as if all was right with the world. They feel encapsulated with a careless warmth. They are oblivious to the scary big fish luring them in with his magical soft light. The fish goes in for the kill and Dory shouts “good feelings gone!” Just like that they are now swimming for their lives, dodging the scary fish and hoping to escape. I get this feeling sometimes like things are moving along really well, work is going well, boys are doing well and I’m doing well emotionally, physically and spiritually, and then something or someone will crank up the buzzkill and all goodness will collapse into air.

Working at the place I do, which is fabulous, December is over the top. We are rewarded financially and valued beyond comprehension for our efforts. The shot of financial and thankful adrenaline propels us to a great start for the new year. I was able to share with my kids and express to them the ever important lesson of hard work reaps great benefits. I think they are now at an age and a mental capacity to not only understand this literally but feel it in their hearts. Last weekend I went on a super fun excursion to the Bahamas. I had looked forward to going and except for less than stellar weather, it surely didn’t disappoint. I am always trying to find the lesson; for the boys they are obvious, basic growing up lessons, for me, to appreciate what I have, to live life with fun and joy and focus on what are truly the sweetest parts of life.

However, and of course there is always a however or a but, the tough reality of my responsibility load is never too far in the shadows. Of course I never really escape my responsibilities, but a pina colada at a gorgeous resort can somehow stay them for a while. Over the years there have been many reality jolts that have sent me into a downward spiral; a work issue, a Bryan issue, etc. The squeaky floorboard of an issue could not be silenced and essentially my whole house would collapse over it. At this point in my life’s journey I am no longer demolishing the house over a squeaky floorboard or a shorted outlet. My skin is thicker, tougher and experience is the quintessential professor. Last night I got home after a very challenging day at work. I needed to process what had occurred and figure out the best way to remove any emotional feelings from what happened and apply logic and said experience. The only way for me to do this, is to distract myself enough so that my head clears of the problem for re focus at a later time. Clarity for me requires emotional distance and at least at this point in my life, I know it. I decided to have a conversation with the boys about a short vacation over Xmas week. Inasmuch as we had two trips this year, to DC and LA, I am not in the position to do anything crazy, and I do want to take them to Europe next year, so I just was looking for a little getaway. Well, here’s what I learned. Autism is alive and well in my home. We talked about Busch Gardens, Captiva, Marco Island, Vero, etc. We talked about Orlando, the Keys, Miami Beach, Ft. Lauderdale Beach, staycation stuff etc. Bryan flipped out. He is great with transitioning if he knows the plan. This abstract, what if, why, how, discussion that Jason and I were having, including visuals on my open laptop, just stressed him to the max. His anxiety level was so amped up that it was visual and palpable. The power struggle between the boys heated up and a physical skirmish ensued. So as the Mom, who is now way smaller than either of these two testosterone filled teenage boys, I kind of need to get out of the way or I’m going to end up across the room. But since I am the authority, police, dictator (no it’s not a democracy in my house), I had to call to order. A few slammed doors later everyone was in their own corner and I was able to sit down and figure out what the heck just happened. I was grappling between, damn these two spoiled kids can’t agree on a vacation, wah wah wah, and hmm, maybe I allowed for too much speculation, too much input to make this easy. I then had to visit the prisoners to sort out the damage. Bryan is way better now at self soothing and while he couldn’t stop expressing his remorse and his anxiety, the physical control now present is critical to my survival. Jason is trickier to navigate since he gets me more and took the zero and fessed up a fairly heartfelt apology. At this point, I’m done, toast, spent. Went upstairs took a hot bath and crawled into bed. Today is a new day and I’m ready for it.

Tempus Fugit

IMG_3295So many things going on in my brain right now that I feel compelled to write. This week has been filled with so many emotions and while I know that it’s normal in many ways it still takes a toll. I started out wanting to address something that I’m so proud of with Bryan. He has really taken an interest in social media and loves to post both silly things, like I just shaved or cut my nails, to really sweet and meaningful things. In March we were visiting LA and we had dinner with some of our cousins. While waiting for the whole group to arrive, I was sitting on the couch with our cousin Dani. Bryan instantly took a photo of us and wrote “I love these two beautiful ladies.” At that point if he wanted soda or dessert or anything else I might have limited, well he had me. This week my beloved, adored Auntie Barbara or as the kids call her Auntie Bubbe passed away. She was quite ill and on some level we knew this was coming, but she miraculously kept surviving trips to the hospital so I know for me I was in complete denial that this would actually happen. As with the  rest of the family, my boys were heartbroken. They loved Auntie Bubbe with her warm and engaging style. She always greeted them with great interest in whatever was going on with them. Jason’s Bar Mitzvah was a  year ago. She loved to needlepoint and she made Bryan a gorgeous Talit cover for his Bar Mitzvah. She wanted to do the same for Jason; but knowing how ill she was she was afraid she would not be able to or be there for the day. About 2.5 years ago she sent Jason and me to a local needlepoint store that had many Judaica patterns. She asked me to take Jason to pick out what he liked and the sales lady, like any store she frequented, would know Barbara Henschel and would get all of the yarn and things needed to complete the project. I am proud to say Jason thought this was the coolest thing. He took his time and picked out an extremely colorful pattern. He was so interested in the fact that she wanted to do this for him and that he got to make a selection. I am truly happy to report that not only did she complete this masterpiece, she was at his Bar Mitzvah to share in our joy. So of course I got off topic a bit. Bryan was unsure of how to express his grief. He kept telling me he was so sad about Auntie Bubbe. You see she just had this way of making you feel good and special, and he felt it too. She talked to him with respect and warmth, and he responded. He wrote a little note to her saying “rest in peace Auntie Bubbe, I’m so sorry you died” and posted it on Facebook. I was a little nervous that my cousins might not like it or feel it was inappropriate. They did not. They love, like and understand Bryan and they found it heartwarming. They laugh with him and they just embrace all that is Bryan.  They can get frustrated and annoyed by him too but they don’t criticize or judge him in any detrimental way. They support me and my life and let him know that he can just be him. Is there anything better? Unconditional love is never to be taken lightly.

While not a new concept, I am luckily constantly reminded that family is everything. For Shabbat dinner we were gathering at my cousin Ben’s house. It felt like a combo of Shabbat dinner and private Shiva. I had recently come across a letter from my grandfather, our beloved Pop, and decided I would bring it. Anything and everything about him always electrifies us as a family and when Bryan and I arrived I shared it with my cousin. In typical sibling/cousin form, we joked about who had more letters or stuff from my Pop and he busted out a couple of beauties and the emotion filled laughter and tears that is and should be Shiva. When the others arrived we continued this laughing and crying and loving. Bryan was right in the mix. While he was a bit irritable and tired from a long week too, my delicious cousins/more like nieces, were all over him making him feel special and appreciated. We stayed until after dinner but with all things Bryan, we left early. He always has an exit strategy and I have learned to comply. I must admit I was exhausted too from the week and wanted to crawl into bed. I got home and while so so so tired, I could not easily fall asleep. Reflecting on the week and the life and love surrounding us I was weirdly happy. Certainly not happy that she is gone, but happy that she had such a huge impact on my life and her love that is here with me each day.

A letter to me.

You know all of the clichés; hindsight is 20/20, can’t look back, learn from your mistakes. I get it, no one knows what they don’t know, but it would be so great if you could just go back in time for some basic life lessons. April is Autism Awareness Month, so it’s always time to think about where we are on the journey now, as compared to when we first busted out our compass and started trekking forward. So what would I say to my younger self, the newish mom, absorbing and coping with all things PDD (Pervasive Developmental Disorder), then Autism? I think it would be pretty basic, but as most of us know the good stuff is always fairly obvious.

  • Listen with your heart. Sooo easy to get caught up in what others tell you. “you should try this” or “my kid did that”. Every kid on the spectrum is so different and most of these kids, particularly Bryan, have language deficits and cannot tell you exactly what they need or feel. Trust your mommy gut, feel your way through, it won’t let you down. If you know in your heart something is good or bad for your kid, go with it. My heart never lets me down.
  • Don’t judge. This is probably one of the biggest lessons I have learned. When you see a family struggling with their kid or if you see a kid acting up, don’t judge. I realize now that so many people have all kinds of personal struggles and each person copes differently. Just because it’s not my way, doesn’t mean I should judge that person. I have not walked in their shoes and vice versa.
  • Be open. Be open to new people, new things happening, new ideas. Be open to other treatments and therapies besides established medical protocols. I revered doctors growing up, and still do, mostly, but I learned that I am a smart person and just because you went to medical school doesn’t mean you know all. One little side note: if something looks like it’s too good to be true, it usually is…
  • Always show respect. When dealing with teachers, doctors, therapists, show them respect for their perspective, expertise,  and time. The old expression, you get more with honey than vinegar, rings true here. Each of these people interact with your kid in a different way and have different life and professional experiences. You don’t have to agree, you don’t have to take your kid back to that person, but even the  negative experiences have left me with some little nugget of learning. A very close doctor friend of mine told me a long time ago to see lots of different doctors. Each see different patients and you never know when something may trigger a reference or an idea for you. Autism is not black and white so things are always changing. You have to change with it and keep getting more info.
  • Slow down. I spent my younger years concerned with reaching goals. I still set and like to reach goals but with Bryan and with my adult self I realize the journey, the process, the pace, can be as important as the goal itself. I’ve said many times that raising a child with autism is like raising a child in slow motion. Things that typical kids achieve at a certain age don’t go that way. I have clichés for this too, it’s a marathon, not a sprint, but there is truth here. You need to make peace with the idea that your kid may not do things “on time” or at all, but either way, take a deep breath and enjoy him.
  • Acknowledge progress. Great story from yesterday. Perhaps this is what got me to blog anyway. I took the boys out to lunch with my mom and sister. Nothing swanky, just Toojays (deli/diner in SOFL). We have done this many times. Bryan was antsy in his chair and hungry and just a little off. Lunch was tense and then we left. Jason took Bryan swimming and all seemed a bit better. Around 4:30 Bryan was very agitated and hurt Jason. Bryan likes to dig his nails into us, clearly a sensory thing, and broke the skin on Jason’s hand. Here is where the good stuff happens. It was a little early for Bryan’s night meds but we encouraged him to take them. He did but I have learned that if he thinks you can get over his bad behavior, if you can acknowledge that something bad happened but you can move forward, he can calm himself down. I told him, “everyone has a bad moment. You now need to get over it and calm down.” I have also find that if I get even nicer, warmer, sweeter, he will calm down. If I get angry or upset, there will be a colossal melt down.Hmm, so am I acknowledging his progress or mine?? In any event, my younger self could’ve used this advice, although I have to say sometimes this is way easier said than done.
  • Open up. My parents are/were very private. Too private if you ask me. I learned that sharing with others helps others to share with you. Parents are the best resource for autism and by sharing my experiences I have had others share their experiences with me. Priceless, awesome, fantastic!!!  If you are an autism parent you will know that there is truly nothing better than another parent telling you the real deal on a therapy, treatment, school, etc. On Saturday I took Bryan to Golf Buddies. I started chatting with another Mom who I have known for years, but have not known well at all. I have watched her daughter at all of the buddy sports and she has seen Bryan. We talked nonstop for the entire hour. We tackled major issues, marriage and divorce, school, housing for our kids, etc. The hour flew by and when I left her I had that feeling of community, the feeling of “wow that lady is my peeps” kind of feeling. The warmth of that hour really inspired me to think about how truly lucky I am to have Bryan and all that goes along with him.

 

Fearless

Autism is not easy to describe because it manifests differently in each person affected by it. Bryan’s autism consists of three major areas: communication, anxiety, and impulse control. I decided a few months ago that I was going to take the boys to LA for Spring Break, which was last week. Jason has wanted to go to LA for a long time; something about the allure of Hollywood and the possibility of being “discovered”. Bryan just wants to make sure he is included and is going too.  I’ve been a single mom for about a year now and, quite honestly, this factor never really entered into the equation of going. I am typically a goer and a doer so I just made the plans.

As the trip was getting closer I sensed anxiety from Bryan. I am not surprised by this fact, nor do I really focus on it. Bryan can be completely relaxed about something difficult or awkward, like a school trip or a doctor’s appointment, yet very anxious about movie tickets or going to the mall. Over the years I have learned that it’s waycali2016 better to just ride it out and deal with the behaviors that come than try to spend cycles anticipating things that may never happen. I have also learned that experience teaches you that you can tackle things if you believe in yourself. I think you either try to learn from your life or you don’t. You are either introspective or you are not.

Getting back to Bryan and fearless. I let the boys know that the flights would be very long. I let them know that there will be ridiculous traffic in LA and there will be many long car rides. I let them know that we are going to have lots of plans and lots of fun and that they are going to have to deal with a crazy mommy. They both were excited by the plans and looking forward to the trip. On the flight out to LA I started feeling some anxiety creep up on me about driving everywhere. I don’t like to get lost and I started thinking, am I nuts to take two kids with me on this trip where although I’ve been to LA multiple times, I’ve never been at the helm navigating my way?  Bryan was holding my  hand on the flight and was talking about going to the Santa Monica Pier, our plans after arrival, car, hotel, etc. I watched how he was processing everything and although he was anxious, he was coping. After we got to the rental car and started on our way, Bryan freaked out a bit about the traffic. It took us about 45 minutes to get to the hotel and I realized he was probably  hungry. We checked in, had lunch, and I noticed that he was really taking it all in. He was excited for our plans and although he was very anxious about the drive to Santa Monica (where I did get a little lost and frazzled) and about the day, he did his best to go with it. By the time we finished our day, on the Pier with my childhood friend and her family, plus dinner near UCLA, he was relaxed and tired. As predicted, as soon as we got back to the hotel he went to sleep. Bryan absolutely loves to go to sleep. The next day we went on a tour of the celebrity homes. Bryan’s only real interest in this had to do with the movies that these celebrities were in. He loves movies!!! That night we were going to a taping of America’s Got Talent. Some combination of the traffic, the time of day, and the waiting made us all very irritable. By the time we got into the theater we had been waiting for 90 minutes. Bryan was done. Jason was so excited for the show, but as a veteran of all things Bryan, he knew he was on borrowed time. I watched Jason try his best to calm Bryan. Bryan did his best to watch the show. At one point I looked over at Bryan who was sitting on the other side of Jason and my eyes filled with tears; he was fearless. He was trying with everything he had to calm down. He knew how much Jason wanted to be there and he knew that we were not leaving in 5 minutes. I had a moment where I thought to myself, did I just push it too hard? Is this too much? What is wrong with me, my kid has autism and I’m expecting too much. After a while Bryan was really hungry and anxious. Jason looked at me and said, “let’s just go”. I can’t think of a moment I felt more pride. Bryan tried to cope to please Jason and Jason suggested leaving to please Bryan. The rest of the trip was uneventful in the best way possible.

Typically going home can trigger major anxiety for Bryan. I had braced myself for a very long flight home filled with constant talking, reassuring, and anxiety. Bryan was fantastic on the way home. I have no idea why he was calm when he typically isn’t. All I know is that he successfully navigated a huge trip and proved once again, that you can never underestimate a person with autism. Fearless!!

 

 

 

Own it.

IMG_1415 (1)You know who you are. You people who have contacted me by all forms of media to let me know I’m not alone, I’m going to be ok and “this too shall pass.” This is not a thank you blog, this is an awareness blog; my awareness. One thing about me is that I know who I am and what I need to function. I need support and warmth, love and friendship. I needed to reach out to the collective in order to get out of my own head. I am grateful and humbled by the responses I received, but, what is also great is that it rattled my cage a bit and got me back on track. Enough of the pity party and sadness. Typically I am all action, what can I do next, how will I solve this one? I didn’t have that feeling this time so I’m glad it’s returning. I was more irritated, annoyed, frustrated. I kept thinking, oh finally we send him to a school for kids with autism and now he’s having an issue? How naive of me, duh! The sheer fact that the school is for kids with autism should have revealed to me just how hard it would be for him, how he would need to really up his game. And how amateurish of me to think just because it’s for kids with autism, that automatically means it’s right for Bryan. Every now and then a good kick in the ass is needed for this Mommy. However, I’m happy to report that I am evolving. I am thinking about how to help him day-to-day and how to help him in the event this doesn’t work out. It never is a let’s just try this or that type of thing with autism. Can’t just up the meds and think it will all be ok. Things need to be examined from multiple points of view, physically, emotionally, psychologically, etc. I also like to get perspective from different people on things. Bryan’s Dad and I have brainstormed and we try to be of one mind. Bryan needs some sort of reward based system, some changed meds, and some behavioral consequences. He also needs to understand that you don’t have to like school, but you do have to get control of your body and yourself. Sounds kind of obvious, but typically it’s the obvious stuff that really is not obvious. Autism. What’s easy is hard and what’s hard is easy. Take him for blood work and he doesn’t move, model patient. Take him to the supermarket and all hell breaks loose. Everyone is focused on the triggers, why do you think he’s upset? Why do you think he’s behaving like this? It’s logical to try to find the root cause, but logic went out the window 10 years ago. Not sure if the triggers even matter. What truly matters, in my opinion, is how to prevent escalation. How to give him the tools to get himself under control. No one can control life’s triggers, but everyone needs to learn how to cope with whatever comes their way. I mean we all have to deal with crap and we don’t always know why something upsets us, but we do learn, when something does, what is the best way to handle it. For Bryan, all of this is in slow motion and needs to be treated carefully and with unconditional love.

I do always like to get Jason’s take on things. I asked him if he had any thoughts as to why Bryan was having such a tough time adjusting. I asked him because he knows Bryan very well and because he spends the most time with Bryan. He asked if Bryan had been bullied at school. I let him know I didn’t think so because it didn’t seem like the issues were with other kids.  I asked if he thought the school might be too hard for Bryan, like maybe Bryan wasn’t high functioning enough. Jason said, “what do you mean high functioning, is that like a little less autism?” Hmm I guess so. Good news Bryan’s cognitive skills were not at issue here.

The lesson for me is patience. Not patience for Bryan per se, but patience with the tempo of life. Patience to see if the changes we are making take hold and patience to find something else if this doesn’t work out.