You can. End of Story.

endofstoryWhile the focus of this blog entry is on Bryan, the title could apply to Bryan, me and basically anyone facing a goal. Bryan is 17 and is an extremely capable young man. I don’t say this flippantly or casually because there is absolutely nothing casual or inadvertent about where he is today.

About 13 or 14 years ago, when we first learned of speech and language delays, among other delays, before we got the big “A” diagnosis, we went to meet a speech therapist who was considered a guru in dealing with “these kids” and our pediatrician arranged an appointment. Bryan and I went and she was a very business like specialist who asked me a bunch of questions about him and his development. For the next hour, no joke, one hour, she sat on the floor with Bryan and played with him, using Sesame Street character figurines and a playset with slides and activities for the figurines. I sat in the room on the chair holding my breath and and trying not to cry or vomit-again, no joke. What would this woman say after this hour? What was she trying to get at? It was all so unfamiliar to me and terrifying. It was not the first, but it was the beginning for sure, of what would become a long road for Bryan, a long road for our family, and a personal journey for me. After the hour she let me know exactly what she thought. I can remember being in my skin at this appointment as if it was an hour ago. She said here’s what I think: “He’s in there. You will need a tremendous amount of therapy over many years. There is no magic pill; you cannot throw money at this to make it go away. You also need to use his strengths when getting him into schools and programs. You are lucky, he is a very handsome and engaging little boy. If you go to a program, take a photo with you, but don’t take him. You don’t want anyone judging him by his behavior at one meeting.” I listened intently as if the Dalai Lama was imparting the key to life to me. Since this was a long time ago and still very distinct, you know this had a huge impression on me. I feel emotional just typing this and remembering how I felt in the car trying to process all of this info. I won’t take you through the timeline because many of you know it, but it was solid, no bullshit type of advice, including the part about how he looks. It was a crash course in “put your big girl pants on lady, because this journey is not for the weak and you better realize in short order that if you don’t get cracking and face up to reality, you’re screwed”. That’s Janespeak for what went down and for the talk I had and continue to have with myself 14 years later. I am quite fortunate, as is Bryan, that his father was always and is always on board with whatever is best for Bryan, and literally has no ego when it comes to him. Men often shy away from these kids and their issues which can make things worse; but that was never the issue. We were and are still of the same mind when it comes to Bryan: You can. End of Story.

It would be so nice to say that Bryan is now a Phd student at Harvard and has outgrown autism and everything is perfect and rosy. That is certainly not the case, nor the goal. However, the goal has always been and will continue to be that if you work hard and set your mind to something, goals are not only achievable but are inevitable. Kudos are offered up to Bryan and his desire to do well, to learn and to please. What the general public cannot or does not understand is that special needs kids work so damn hard at everything and every moment and task is evaluated. “Gee Bryan was great at lunch last week.” Oh yeah, well how was Jason? I know it’s unfair but imagine your life was one big report card. It’s tough. The one thing I do know is that the most important thing we can give to Bryan is his sense of pride, his sense that he can do and be whatever he wants, without regard to a timeline. And for the record, autism still sucks. Yes, I am grateful for the life lessons, yes I am grateful for Bryan growing up in slow motion and still allowing me to kiss him and hold hands in public, and yes I am grateful for the love and support from some of the most unlikely people. The anxiety that Bryan experiences as “his autism” still thwarts some of his progress and still tests even the most patient of people. His impulse control issues and his language delays still impact him and us regularly. While he feels complex emotions which can be learned from his behavior and some language, his expressive self is still highly challenged. So while I suppose I can and do appreciate the progress, the lesson must always stay in the forefront for both of us. You can. End of Story.

 

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.

 

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.

 

Plug it out!

bellsLanguage deficits are extremely frustrating, not only for the person trying to express themselves but for the listener. Over the years I have learned to speak Bryan and interpret many of his sayings for their real meaning. Some cute funny things are like this: Bryan always empties the dishwasher. In the middle of emptying it he will say, “there’s a lot of dishwasher.” This means the dishwasher was very full and had a lot of dishes. Or he comes up with silly stuff, like instead of unplug he says “plug it out”. Or he will get some things backwards. He will say to my dad “you’re my grandson” and then we correct him and he says, “I’m your grandson.” All in there, just not always the way you expect it to be. Mostly a good thing.

The hardest thing for many kids with autism, and Bryan in particular, is the exchange that takes place in conversation. One person asks a question and the other person answers. Very very basic, but this essential structure of conversation was what led me to the conclusion something was wrong in the first place. Go back to when Bryan was almost 3 and I took him to the zoo with a friend. He knew the sounds the animals made, but did not truly engage. My friend and her son, a few months younger than Bryan, were having conversation. He was asking questions and answering questions. Not Bryan. Driving home in the car I asked him if he liked the elephant or the tiger and he said nothing. No answer at all. Hmm. As time progressed and tons, I mean tons of speech and language therapy which he still gets today, he started to answer some questions. It was fairly easy to get a who question answered or a where answered. I think for Bryan those were just easier questions because he knew people’s names and heard us often talk about places we were going and these questions don’t require the same level of thinking to answer.  It also taught me that when you ask him something, or talk to him, you cannot assume he knows the meaning of the word. I had to remind myself that you need to give him the definition of the word  because the nuance or the gist of it is not picked up. Still need to do this today. It really makes you think about how much language is actually learned by inference and not definition. As a parent or sibling it’s something that always has to be in your mind if you want to effectively communicate with your ASD kid.

The key to learning for Bryan is allowing him the time to process. It all comes bubbling up if you give it time. However, a huge thing has now started to happen. Like most Bryan things, it is something that just started happening and I say to myself, wow, this is enormous. So here is the thing; getting an answer to the ‘why’ question has always eluded us. It is so frustrating and so challenging, particularly when trying to get to the root cause of some unexpected behavioral issue. For example, he will get upset at school and pinch someone or kick the desk. If you ask him, why did you get upset at school. He will say “because I pinched so and so.” I will say “No Bryan, that’s what you did after you got upset, but what caused you to get upset, why were you upset”. And he will say ” because I hurt so and so” or “because I had a bad moment”. UGH come on you’re killing me. You know the answer but you can’t tell me. He’s 16 and this has always been the one critical piece missing in having meaningful conversation.

Bryan answered a why question!!!!!!!!!!!!!!!!!!!

Now I know you may think I’m cookoo, but it really is beyond huge. It has only happened over the last 10 days and not consistently, but still!! Bryan loves videos, movies, and music. He particularly still loves Thomas the Tank Engine. It is juvenile, but the tank engines have very expressive faces and the videos often deal with the tank engine’s emotions and their interaction. Thomas videos have been regarding as instructional for face recognition and therefore a good tool for little kids with autism. I will not let him listen to Sesame Street or Barney (and thankfully this does not come up anymore) but Thomas is a different story. We do the voices together in the car and he tells me all about the engines and what’s going on. So a few times recently he has told me that one of the engines was upset. I asked him “why was the engine upset”. I was not testing him, I was really just driving and making conversation. He said “he was upset because he was sick and making black smoke”. I paused a second, realizing the enormity of this and decided to probe a bit more and said “why was the engine making black smoke?” and he said “because he ran over some dirty rocks and it got in his engine”. OMG he answered two why questions perfectly. I seriously choked back tears. I said “Bryan you answered why questions, yay” As I speak Bryan, Bryan speaks Mommy. He said, ” I love you so much” which is his standard answer for anything that he does not know the answer I’m looking for but knows I am very happy. Now I know we are not splitting the atom here, but by my standards, we might as well be. To give you a sense of the enormity I couldn’t wait to tell Bryan’s speech therapist. She teared up and said, “we’ve been working on this for years.” It truly takes a village, I’ll tell you that.

So, I am not going to say this is happening all of the time, but it has happened and the more he exercises this “muscle” the more it will happen. I’ve waited so long to get this type of answer but I knew someday it would come. 

 

 

 

 

Debunking and decoding.

The thing about stereotypes is that there is some grain of truth buried beneath a generalization. There are people for whom the stereotype is a perfect fit, probably how it got started in the first place, but for the group described, as a whole, it’s just wrong. There are all kinds of stereotypes for autism. Each person with autism is different, so the stereotypes really don’t fit well. For Bryan I have learned that many of the common ones really aren’t applicable. Does this mean he does not have autism? Does this make him more high functioning than others? Nope. Bryan is not sensitive to loud noises. Last night we had dinner at the Cheesecake Factory with friends. The acoustics in the room we were in were so poor, I found it hard to hear anyone speak and certainly if you had any noise sensitivity you would have struggled greatly. Bryan and his classmate from school were completely un-phased by this noise level. Interesting, but not enough to get me to write a blog.

This past weekend the boys were with their Dad. I had planned to pick them up late afternoon to go to the aforementioned dinner. During the day I had made plans to take my Mom out to brunch and then have her spend some time with me going to Lenscrafters for my eye doctor appointment and shopping at the Boca Mall. If you are a Jewish mother and daughter, going to the mall to shop on a Sunday is as normal as breathing. My mom, however, has Alzheimer’s Disease and the purpose of our outing was not a fun day of shopping and sharing. Instead, I was trying to spend some time with Mom, give my Dad, the primary caretaker, a much needed respite, and to accomplish some tasks while the boys were away. At brunch my Mom was really struggling with eating and at this point we have no substantive conversation. Really, we have no conversation at all. My Mom is/was a very dignified, elegant woman. When she is with me I tell myself to protect her dignity, her long since passed self-esteem. My mom is/was a very proud, stoic person and as her daughter I feel it is my job, my duty in a way, to treat as she would want to be treated if she could take care of herself. It’s not easy, I will tell you that. Wrong, it sucks big time!! In any event, we spent about 3.5 hours together and then I took her back home to my Dad. He is struggling with this situation; it is really a mind fuck. Here is the person you love right in front of you, yet they are not them and are not coming back. Heartbroken is the only word that surfaces.

Ok so I go to pick up the kids. I must admit that although I am always happy to see them after a weekend apart, the very sight of them after this tough time with my Mom is like getting a Carvel sundae. Sweet and delicious, and exactly what you need after a salty meal. When we drive a little I can no longer hold back the tears. I want to shield them from what’s going on yet they are old enough to understand and participate. Jason was up front with me and was his typical loving and caring self. I always battle between showing them the upset, vulnerable, mommy and trying to keep it all in so they won’t worry. No one can hold the damn all of the time. Bryan, however, did not say a word as he was in the back seat focused on our upcoming dinner. After dinner we got home and after a few chores were done Bryan was sitting on the couch perpendicular to me. He said, “Mommy, I’m sorry you’re worried.” I knew exactly what he meant. I know and can decode Bryan. You see, while he doesn’t always say things at the moment, he processes slowly,  it comes out later. I got up and hugged him so tightly. Empathy. Yes, a boy with autism can show empathy. I was literally taken out of my despair and embraced by this small yet enormous milestone. If you have a child and they show empathy, you always feel great. But if you have a child with autism, well, another huge stereotype debunked.

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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.