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.

 

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.

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”.

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. 

 

 

 

 

The noise in my head

If you know us and/or read my blog you know that Bryan is not a quiet kid. He talks loud, he will yell randomly and basically when he’s awake you hear him. I don’t really hear him anymore. I kind of notice more when I don’t hear him than when I do.  A few nights ago he went to bed early and Jason came downstairs to talk to me. I said, “Is Bry sleeping?”. He said “sure, can’t you hear how quiet it is? It’s nice to have a little quiet.” It’s true, the quiet is almost so loud you can hear it. It’s just another one of those things you get used to, it becomes your normal and you only notice the absence of it. Really I am way more distracted by the noise in my head, the little sounds of have you been planning for the future for Bryan sounds. He’s 16 so how much longer can I pretend he’s a little kid? Financial planning is one thing for him, but the rest, yikes, the rest of it.  The rules change, as I understand them, at 18. He will need a guardian and other things that I have not faced up to  yet. I think if I’m really honest there is some sort of secret hope left that maybe in a few years he will be ready for college and a “normal” life. I am a bit ashamed to admit that while I try to be realistic all of the time, dealing with Bryan’s adulthood disturbs me more than anything. There is no hiding the fact that my son has autism and very likely will not have a typical life. I truly feel like a piece of crap even typing this, let alone processing it, let alone living it. Beyond, even after all of this time. It is shocking to me that I still have some little place in my soul that thinks he may end up some typical adult. I guess as a parent, there is no end to mourning the differences that a special needs child brings to you. There is still no peace and there never will be. No amount of love and acceptance can ever truly heal the feeling that sometimes things aren’t fair. And I know everyone has challenges and ups and downs with their kids. It’s different, I promise you. I know because I also have a typical kid. There is a difference between worrying about how your typical kid will navigate life and how you navigate on behalf of the special needs one.

I will get over myself and deal with the reality and figure out what needs to be done.

If you are one of my close friends or autism parents reading this you may be saying, “wow I didn’t know you felt this way”. Yeah, I haven’t faced up to it. When people ask if Bryan will live on his own or go to college or drive I cringe, both literally and figuratively. The loud battle between the mind and the heart, the needing to face up to the reality of what is coming and the emotional denial is deafening. When someone says group home I get anxious, like can’t you people just shut up?  I know this sounds extremely melodramatic but it’s just sort of the next thing in my autism journey. I look at memes people post on Facebook and all over the internet about kids that are often undressed or running away or hurting themselves. Those “issues” are not our autism issues any longer. I see those posts and I can measure our growth since those times. While Bryan may get up very early on a weekend and be very loud and disturbing, I no longer have to get out of bed and deal with it. He can make his own breakfast and I smile in my bed when I hear him up early and clanking plates because he’s emptying the dishwasher. The worst he will do is eat too much! The new challenges are deep. I can’t hide behind time anymore. Seems like we are growing up at the same time in many ways.

 

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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