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!

 

Love is Love is Love

IMG_0384 (1).JPGI do not make New Year’s Resolutions, I make hourly resolutions. I couldn’t possibly store up all of my potential improvements to force them out in a year end blast. My journey is iterative and I’m forever fine tuning the workload. At this point there is also a collision between resolutions and  bucket list items. Kind of what do I need to do vs. what do I want to do, etc. Good news is it’s my set of lists and I can manage it any way that fits. So although I do not make New Year’s Resolutions, I do try to take a pause to appreciate my life and the people in it at this time of year. So this  year I am going to focus on love. When I watched Lin-Manuel Miranda give his Tony speech right after the Orlando shooting, he said “love is love is love….” in reference to the respect for the people who are homosexual and were victimized by the gunman. It is a great reminder and his speech really touched me. It was a rough, emotion-filled speech/sonnet fueled by his need to acknowledge the Tony he was receiving  and yet his compulsion, his pure heart, that couldn’t pass up the forum to comment on the most recent tragedy. Something about his delivery, his body language really struck me; this man feels his words, he just doesn’t say them. It was almost as if he was holding back the words but they had to escape from his brain via his mouth. Do I have that much passion about anything? Hmm, kids maybe. I actually think my main passion at this point in my life is to try. I just want to try at being better at everything. The only way for me to achieve this is to work on what is most important, the priority, my love relationships; to which I am proud to say I have plenty. So here are some of the ones that are most precious to me and my recognition for their significance in my life and my desire to enhance them.

Sibling Love: If you have a sibling and you are lucky enough to love them and feel love in return, you get it. This person who shares the unique joint perspective of growing up in the same home and watching parents and family members influence your development, there is such a crazy bond that a quick glance over dinner can say it all. I am proud to say that the shitty relationship my sister and I had growing up, the constant fighting and comparisons have been left in our childhood home and the mutual respect and fun we share now makes up for it all. Sharing the burden of our aging parents has solidified the bond even more. Fortunately we understand our individual and collective roles in the process. My sister, luckily, like me, finds humor in the humorless. We could write a book with optional titles such as “laughing at your life when you should be crying”, “Things you never thought you would hear or should hear coming from one of your parent’s mouths”, and “Who am I and how did I get here?” As far as sibling love goes, I cannot even do justice to the sibling love between my boys. They adore each other; their relationship is very complicated, yet not. Bryan may be older by 2 years and 8 months, but chronology is not a significant player in their situation. Jason has always been a very caring and loving brother. Often other people remark about how good he is with Bryan, how helpful he is, etc.  To Jason, Bryan is just Bryan, his one and only sibling, and there since his birth. I would not say I take it for granted, because that would be untrue, but if you truly know Jason at all, it’s just who he is. His level of empathy and compassion for people, not just Bryan,  is just as much a signature trait of his, as autism is for Bryan. It’s hard coded in and that’s that. And like all sibling relationships there is ebb and flow in their bond and growing pains both literally and figuratively.

Parental Love: So you know the love I feel from my mom has changed dramatically over the last few years. I no longer have the ability to call her multiple times each day just to share something funny or get some advice. I no longer have that confidant who always had my back and thought I was the jammy jam. My mom was so reasonable and so thoughtful in her advice and she had many close long term friends who also feel the void. In later years she really helped me navigate tricky waters between my dad and my ex husband and ultimately was very supportive when I began to speak with her about my ailing marriage. She was a homemaker and not a career woman in any way and we talked about how different our lives  were and we agreed we each were programmed so differently that we could not walk each other’s path through life. My mother respected me as a woman, mother and business person. What propels me now when I see her is this need to be even better because I don’t have her to talk to. I want to show her, or really me, that I can be a “big girl” and handle things. In order for me to move forward I need to have personal goals; some very tangible and achievable and some more esoteric which manifest on the fly. Either way, I want my Mom’s legacy, for me, to be that I am that girl she loved and respected. I need to earn my way. With my Dad it’s become such an interesting change. I was always daddy’s girl and he looked at me with love and pride since childhood. Over the years there have been tons of bumps and bruises but now we are on a steady course, banded together over decisions for my mom  and forging ahead with his new and uncertain life.

Mommy love: Is there anything so great? Before you have a kid you hear about this gripping bond people feel for their children. You think it must be something special but you cannot truly conceive of it. The little angel appears and you think, “oh so this is what they were talking about!!!” Take my heart, melt it over and over again. And then when it was time for another, you think can I really love another one just as much? Yep you can and you do. My boys are my joy, my focus, my reason, my why. Their triumphs are mine and their challenges, well yep get those too. ‘Nuf said.

Bryan/Autism love: The kid knows how to work the fan club. He is a one man PR specialist for autism awareness. He loves to love and reaches out on a daily basis to friends, family, teachers, therapists, counselors, etc via facebook, facetime etc. I am truly fascinated and beyond appreciative of the warm reception he receives most of the time. Whenever talking to the recipient of these daily calls, etc. they feel special, as if contact from him is directed only at them. Who does not want to talk to someone who makes them feel special? Autism, however, is still so challenging, imagine having someone in your home who literally cannot stop talking or repeating and at the same time is so anxious the minute they sense you are not happy with them and what they are talking about. It’s the ultimate test for Jason and me on a daily basis. But somehow Bryan’s sweet goofiness, his silly inappropriate behavior more often than not forces a chuckle between us and we forge ahead. When meeting my cousins a few days ago for lunch,  I was so happy with the way they celebrated his silliness and made him feel just like he was “one of the kids”. We have tons of friends near and far that are cheering for him. No real words suffice.

Friend love: I am truly beyond lucky to have wonderful lifelong friends. My bestie  is a lifer and she is my touchstone for all things. My close inner circle of female friends are a combo of coaches, partners in crime and sisters from other misters. My close friends are not limited to women, however, I have some incomparable male friends that I adore. Some of my friends live nearby but often they are in NY, solidifying my need for quarterly visits up north. Over my years in Florida, I have made many new friends that have started out either as “autism parents” that morphed into real friends or “work colleagues” that have also become warm, true friends. What I value besides the loyalty and trustworthiness of my friends is the variety. Some friends are more advice givers, some are more just buddies for happy hour. Either way, I love observing human nature and understanding the different dynamics.  I am a very social person and I enjoy hearing other’s life stories. At this point in my life we have all lived a while and no one is without some sort of challenge, lesson, or funny anecdote which I find very captivating.

Cousins/extended family love: If you know me personally, you know my cousins are not cousins they are brothers/sisters, nephews and nieces. One of the main attractions for living in Florida was the proximity to this crazy clan and you just have to see my face when I’m with them. The depth of these relationships is personified through unending teasing, laughter and appreciation. If you go to one of our events and you left your thick skin home, well sorry Charlie, you are screwed. The need to laugh at yourself through the eyes of those you love is a great lesson. It is so freeing to know you can be yourself with a large group of people who will take you down and build you up inside of any group gathering. The link between us and our kids is one of the best parts of my life and although I tell them all of the time how much I love them, they know just by my body language displayed at any event.

Pet love: This one should be quick. Furry creatures make me happy. A curl up on the couch with a yummy dog or cat is therapeutic and warm. I love my animals, they are family and they make our lives better.

Romantic love: It is always a necessary part of life for me. I am a very affectionate person and I would like to say I have fallen in love since my divorce. I have not. I have fallen in like once or twice which is electrifying!  I have found some connections and have had fun along the way. I have learned that I am still capable of having great romantic feelings and that feels awesome. I believe real love is out there for me and I will not settle or fail to take risks to find it. No pain, no gain. Simple but true. I am totally willing to be in the game for the better of team me.

Happy 2017!

 

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.

 

What does the J stand for?

I go to see my Mom in her new place on the weekends. Yesterday, Bryan and I went on our way to his usual speech therapy and social group. We planned a regular visit which is about 20-30 minutes. I typically like to take her for a walk. She doesn’t talk much and mostly I feel like Shecky Greene doing a monologue (if you are too young to know who that is google it) but I try to get her out in the fresh air and talk about what’s going on in our lives. The bad news is she doesn’t remember what I tell her, the good news I can tell her the same things over and over and she doesn’t get bored. Ok, I know that’s really not funny, but humor is my way of coping and at this point, nothing about this is funny so I have to make a joke out of it. We sat down outside at a table and Bryan was looking at his phone. I wear a “J” initial necklace and my mom said to me, “what does the J stand for?”. I said “Jane” and there was nothing but an “oh, ok” from my Mom. I had to look away. I felt that hot feeling come over me, and no not a hot flash, but that feeling like when you are holding back tears and/or vomit. I thought for sure she might say something like “my daughter’s name is Jane or right”. I don’t care for the expression “the new normal” but somehow it’s fitting. We left not too long after and I didn’t cry when we left. I took Bryan to his speech therapy and sat in the car for a few minutes reflecting. How does the brain  retain so much info and then slowly lose it all. Fortunately, for now she still recognizes me when I come to see her. She doesn’t know that I’m her daughter, but she does know she knows me. She is always excited to see us; at least for now. The strange thing in all of this is even though she does not recall details, like my name or how I am related to her, she does know that I belong to her. Last week when I was there we sat on a bench and we flipped the pages of People magazine.She likes to look at the photos and it does help give me some things to say to her. We notice the fashion and the ads. She looked at me and said “we love each other”. I smiled but again my eyes filled with tears; much happier tears. When I leave her and  I’m alone I always break down. She is doing well, but the reality that she is not ever coming home still gets me each time.

When I go now it reminds of a time when Bryan could not really make a sentence or have true conversation. I remember when we were still living in NY and I took him alone out to dinner. His inability to make an exchange, even in a small sentence, was a big trigger for me to know he was not a typical child. Ironically my mom is now very similar to that small Bryan. I guess the best lesson is that it doesn’t matter whether they can answer back as long as they know they are loved.

 

Go Team!

img_0241The similarities between the approach I’ve taken to Alzheimer’s and my mom to Autism and Bryan are becoming more obvious. It’s interesting to me how much one good methodology can be applied to multiple situations. For years I have been saying that you need to harness the collective when it comes to raising a child with autism. As the mom of one of these kids, you need to realize you are the quarterback of an amazing team of people, family, therapists,friends and other parents. These people each have their individual skills, but getting them to work together, in the way that works best for your kid, you need to have a sense of both the near and far. You need to call the plays because at the end of the day, you know your kid better than anyone. Over the years we have adjusted the playbook, taken on some new players, and retired a few for the best interest of team Bryan.

My mom’s placement in the Alzheimer’s home came as a team effort too. We did our research but in the end the recommendation came from a friend whose father had been there. She is a warm and trustworthy person so we knew we were in good hands. The adjustment has been difficult for all of us; however she seems much better so that is what counts. My dad has been going to the support groups that the home sponsors. He is learning to share with others how he is feeling about my mom’s placement and learning  that by hearing other family’s stories and their pain, he will not only feel a sense of comradeship but will also get some relief. There is a safety, a warmth in belonging to a group. Identifying with those similarly situated is incredibly uplifting. I have noticed when I go to see my mom that  I see the same family members and we have started to know each other. We all say hello and have empathy for our mutual plight. Today I got to the home about 10:30 and two of the family members were in the entry way. They were telling me that they had seen my mom and how sweet and cute she is. I told one lady that yesterday her husband said hello to me and gave me a big smile. I walked in having that familiar feeling of community. While I know my mom will not get better, and that is always lurking in my psyche, I do know she is doing as well as can be expected. The boys feel it too. Last weekend I took the boys to see her after we had breakfast with my dad and sister, our new Sunday morning ritual. My dad is terribly lonesome and the early mornings when he is alone in his house typically sting. Usually when we walk out of my mom’s place I get about two steps from the front door and start to sob. I am ok when I see her, but leaving her in a place that is not her home is quite disturbing. The boys had been very affectionate with her that day and I didn’t feel so sad when we walked out. Jason turned to me and said “Mom, you’re doing so much better with Grandma”. Ok well so much for doing better because his tenderness made me sob in a different way. I knew they were impacted by emotions, but had not felt it so directly. We are experiencing this change all together and learning how to support each other, go team!

Choose your mindset, yep I know I have used that title before.

IMG_2951Some things resonate. A few years ago I wrote  a blog post about a speaker I heard say to “choose your mindset”. It gripped me then, and clearly, still has me now. The language we speak to ourselves, the things we tell ourselves matter. If you are not good at something and keep reminding yourself you are not good at it, well you are just reinforcing that bad behavior. You have a choice. Tell yourself you’re a fuck up or tell yourself, wow I just learned something and now I won’t do this again. I am evolving! I am a study of all things behavior and people, particularly myself and my kids. I have always been introspective. I hold myself to a very high standard of treat people how you want to be treated. This summer has challenged me in so many ways, and the mindset I have chosen is “I got this”. I am stumbling here and there for sure, but the focus, the way I speak to myself is positive and empowering.

If I have to trace this feeling back to anything, it is Bryan. If you tell someone you have a child with autism, you often get, “I’m sorry”. Damn cuz that hurts. It is easy to fall into the space of why did this happen to me or my kid. To build up the positive muscle of embracing the journey, you have to work it out. You have to keep pushing it and pushing it. No quick fixes on that one. And you fall of the wagon for sure, like when someone says, do you think Bryan will drive soon? Or do you think  he will be able to have  a job? One big lesson is to remind myself that no matter what anyone asks, they are typically inexperienced in this world and just don’t know what to say. I love the saying that you need to love the child you have, not the one you expected. Great lesson, not just for parents of special needs kids; this applies to all parents. But if you know me, you know that saying nothing to me or ignoring me doesn’t work well for me. Ignoring something or someone because addressing it or them makes you uncomfortable is immature. If you want to show someone you care, show them, take action, address the topic. No one expects anyone to have answers, but empathy is always welcome.

I had a huge reality check on this one recently. My mom has Alzheimer’s and has been declining rapidly. On two occasions recently she did not who I was. To tell you that was devastating is a colossal understatement. My dad is the major caretaker and is sad, overwhelmed and frazzled. When my sister and I call and he tells us some things that have occurred I find myself saying dopey things that I would hate if someone said to me about Bryan. A lesson for me to once again be gracious for those that ask about him and recognize that when you don’t have experience with something, it is challenging to help someone. I remind myself that these people are at least saying something and not ignoring it. At least they want to try and help. My dad gets very upset and says to us “you have no idea” when we ask how things are. So I decided to change my mindset and ask him, “Dad, what can I say to you when you say this?”. The answer is fantastic and the same answer I always want to hear: “just tell me that you love me”.

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.