It just doesn’t matter

brokenheartAlzheimer’s disease is a thief. It robs you of your loved one, it robs them of their lives and it robs emotions. I teeter between this very intense reality of watching my mom slip away into just a body, just a tiny version of her former being, to complete denial this is happening in my life; some sort of self protective armor. The problem, to way oversimplify things is, that I do not live like an ostrich so the bury your head in the sand approach not only doesn’t work in reality but has never worked for me. I am a talker, a sharer and an open book. So if I really need to express what I’m feeling now as some form of catharsis, you will need to bear with me.  I go to see my mom every weekend. At first there had been some conversation, little snippets about things in a magazine we looked at it or about the boys and school. Over time there has been less and less and I don’t ask any questions. I learned when Bryan was little that when you ask someone with a language deficit too many questions, it raises their stress level so high that even if they could answer, they now would not. For the last few months I essentially have talked or just held her hand or just took her for a walk. Sometimes we would sing songs because the remarkable brain can still somehow conjure up words aligned with a tune.

In the last few weeks there has been a noticeable decline. Although when I say “hi mom” she still perks up, but not sure if it’s just because I say that or she has recognition. I will say every now and then we still get a somewhat knowing glance. It reminds me so much of the times when I connect with Bryan, particularly when he was small and just the eye contact where the gaze is held for more than a few seconds, communicating an entire paragraph’s worth of info. Over the last few weeks there have been some disturbing physical manifestations going on. No, not the top of mind things like incontinence, we are way down that road already. I’m talking about finding her with a bruised lip or face, her hand swollen, a few scratches on her arm.  I can imagine your thoughts. What type of place did you stick her in? It’s not that, it’s a fabulous place with great care. She has extremely paper-thin skin and has always bruised easily. Her balance is not great so she can slip easily. She apparently has been somewhat defiant with the folks that work there when changing clothes. When the boys are with me on the weekends they go with me to see her. I am proud to say they want to see her and do not shy away from this or make me drag them. Due to some scheduling issues Jason had not gone with me for a few weeks. Bryan and I alone went on Saturday and she had two major bruises and I could see the worry on Bryan’s face. We now only stay about 15 minutes. There were stains on her shirt and she seemed disoriented. There is virtually no conversation and often she does not say a word. She is having more trouble walking, she sort of shuffles,  so we take very very short walks. When we left I was teary and I hugged Bryan and when I looked at him his eyes were filled with tears. “you’re sad because Grandma has a purple face” (clearly referring to the bruise by her eye). I have never taken a bullet, but I can imagine what it must feel like at this point.

Yesterday Jason wanted to go. I gave him detailed prep because I didn’t want to see the shock on his face that I saw on Bryan’s the day before. We found her sitting outside in the sun. Jason did a great job of holding it together and hugging and kissing her. He sat next to her and just held her hand. She looked at him and said “I love you”. He has this tender way of dealing with people and I think she just got it. She didn’t know his name or anything about him but her heart reached out to him. I could see he was happy. She seemed sleepy and detached after that. We left and when we got outside Jason completely lost it. He literally sobbed uncontrollably and of course then I started. Bryan said “you are heart crying because of grandma”.  The rest of the day we kept busy and focused on other things.

My dad really does the heavy emotional lifting. He lost his spouse, best friend and partner in crime. He and my mom have been together since college and they had that kind of relationship we all long for; where the best times you  have are just when it’s the two of you alone. He has had a tough year both emotionally and physically. He called me late afternoon to tell me he found out some more info on things going on with my mom and I literally could hear the pain in his voice. I tried to reassure him that we would get her the help she needed but we cried a little together about how she is declining  and changing and how horrible this is for all of us. That’s the difference between Autism and Alzheimer’s. Autism always presents hope. For Bryan, there is always something new and exciting just around the corner.

After I hung up Bryan came over and gave me a hug. He gets so upset when I’m upset. He is so connected to me emotionally that I wish I could have prevented the tears, for his benefit, but I couldn’t. Jason heard all of this and came downstairs and we had a group hug and kiss and  all just cried. What becomes of the broken hearted?

 

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.

 

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!

 

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.

 

The hits just keep on coming

IMG_3302I know I have said before that Autism sucks. Well it doesn’t, at least not really or by comparison to Alzheimer’s. Alzheimer’s really sucks and takes suckage to a whole new level.  If you know us and/or if you are a regular reader of my blog (thanks by the way) you know that my mom has Alzheimer’s Disease. I was familiar with this joyful disease when my Nana  had it in the 80s. But, she was my grandmother, didn’t take great care of herself, it was in a different era, blah blah blah. My mom has it and we are now making some changes in our family for survival purposes; her survival and my father’s survival.

My parents never told me important things when I was growing up. There was always a lot of shushing and Yiddish when anything went down. You knew something was up but you only found out much later on what occurred. I do not subscribe to that philosophy. I think age appropriate descriptions of what is going on in your life affords your kids the opportunity to grow and learn and deal. On Friday we were able to place my mom into a Memory Care Facility for Alzheimer’s patients aka nursing home for people with the disease. The decision to do this was ultimately my Dad’s since it is his wife, but as a family we are all mindful of what is best for my mom and my dad. I’m proud of the tenderness and understanding we have shown each other during this time.

So I need to tell my boys what is happening. Bryan and Jason are so close to my folks and they have watched the transformation of their highly engaged grandmother to this tiny childlike woman. I feel not only grief-stricken for my dad, my sister and me and our close extended family,  but for my boys. The difference in her is obvious and while they do not cry, since she is still around, they have mentioned many times the change and ultimate deterioration of her mind. I was a little tentative to share with them; we are still WAY grieving the loss of my aunt. The nights are the worst; it seems that the nights have a way of playing with you. I’m sleeping briefly and then waking up to, did this shit really go down? Is my Aunt gone? Where is my mommy? I always get off topic! Ok so I decided to talk to the boys over dinner on Thursday night. I had mentioned to them previously that Grandpa, Aunt Frannie and I were going to take Grandma to a place to live, but that now was the time and it was going to happen the next day. Jason asked the typical questions, where is the place? will we be able to see her? does she know? how is Grandpa doing? (that last one, I am proud to say, is who Jason is, ever concerned about the casualties). Bryan did his typical Bryan giggle which happens when things are awkward.We talked through what I knew and what I would find out. I was very very emotional that night. I literally could not reel it in. I reassured them I was ok but since I don’t  hide things I know they felt bad. I guess on some level they needed to see that I was grieving.

Later in the evening I went to see Bryan in his room. He was just resting and I was teary. It kind of went like this:

Me: Bryan do you understand what I told you about Grandma?

Bryan: Is Grandma sick?

Me: Yes sort of, her brain is sick.

Bryan: Is Grandma going to die?

Me: Everyone eventually dies, but she is not going to die now. She is just going to live in a place that is safer for her, where they can take care of her.

Bryan: Are Grandma and Grandpa getting divorced? (can you say sucker punch to the gut on that one?)

Me: No honey, it’s just that Grandma has  brain disease and Grandpa can’t take care of her anymore with it. She needs special care.

Bryan: She’s going to the hospital? She’ll be home soon.

Me: No, she’s not coming home.

At that point, I had to stop and tell him we will talk more tomorrow. I literally got so overwhelmed with being overwhelmed I knew it was better to take a pause. He was very tired so he went to sleep.

I, of course, was not able to sleep at all after that. How do you explain to your kid with autism something that while intellectually you know but can’t really explain to yourself? What really kept me awake, however, was that I didn’t have the language I needed to give him. Bryan talks to so many people, calls, FaceTimes, etc and I want him to “get it right” so people won’t be worried or confused about what he is telling them. I could not find the words and truthfully still cannot. I was completely dumbfounded. I know this might sound a bit melodramatic, but I wanted him to understand and to represent appropriately. I guess I am my mother’s daughter because she was so proud and private, I want to make sure she is not embarrassed and can retain some sort of atmospheric dignity. So crazy, she will not know, but I guess I will know and that is the point. A few days have passed and we have been getting some typical reports from the facility. I still do not have the words for Bryan nor for me.

 

 

 

 

 

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.

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.