Why do you ask?

Years ago my mother and I laughed about saying “Why do you ask?” to people who asked dopey, nosy questions. If you say this, they get a bit tongue tied because their answer should be “because I’m a nosy person”, but of course no one really says that. My mom was extremely private and never liked the feeling of being interrogated (who does?) and was very defensive when it came to the family, especially Bryan. Over the years I have learned to be more tolerant; trying to put this under the heading of  Isn’t it better for someone to ask a nosy question rather than not asking at all?  I still struggle with this one because people can be very thoughtful or thoughtless, but I try to keep in mind that people don’t know how to handle the unfamiliar.questions2

Case in point-Autism questions like, Is he high-functioning? If you know me, you know that’s a tough one, because it’s not like there is a standard scale. Yep, he’s 4.5 on the high-functioning scale. It’s subjective and no one ever wants to say, my kid is low functioning. It hurts, it stings, blah blah blah.  If I said he was low functioning, what would that do for you? I guess it’s better than people saying “I’m sorry” which they can do when you say your kid has autism. What the hell is that about? The first time I heard that one I have to say, I was completely shell shocked and speechless. I am never speechless. However, people don’t know the right protocol unless they have a kid with autism, so they are trying. Take the good with the bad, I tell myself. For me, some days I am patient and understanding, some days not so much. You get it.

Moving on to what’s in my mind, the impetus to blog. Yesterday was Mother’s day. This was the first Mother’s Day without my Mom being with us and the first one since my beloved Auntie Barbara passed away. A double whammy for our family. Recently a new question has come up that makes me want to say “why do you ask?” Every Sunday we have breakfast at my Dad’s club. It is gorgeous and it’s beyond spoiled and each time I remind myself and the kids of our good fortune. So a few weeks ago some woman who knows my folks came over to talk to my Dad and asked how my Mom was doing. She said to him “Does she know you?” and then points to me (literally points) and says , “Does she know you?”Here are the choices for the answer as they play out in my head:

  • Answer in my head:   She has no fucking clue who I am and it sucks lady.
  • Better answer, but not the one I typically give: Sometimes, it’s very difficult emotionally for all of us.
  • Answer I give: On occasion, but not too often anymore.

Any answer is typically met with no response, which is why you want to say, why do you ask? If I say she doesn’t know me, what info is gleaned from that? Sounds mean, but think about it.

I can’t imagine asking this question. Maybe it’s because of Bryan I have heightened sensitivity to weird, nosy questions, or maybe it’s because my mom taught me not to ask nosy questions. I would say this lady was an anomaly but it’s not the case. I am a pretty tough cookie at this point in my life, but people, take a minute to think about stuff!!! Ok so this blog is more of a rant than a blog, but if my purpose is to get something off of my chest and to raise awareness, I think I may be done. Well almost….

Recently I was shopping with my work BFF in Nordstrom; I was buying a gift in the jewelry dept and there were these mantra bracelets. I’m not big on that stuff but she picked one up and said, you have to get this one, it’s so you: “Be true. Be you. Be kind.” Nothing else really matters.  First of all,  the fact that anyone thinks this mantra represents me is enough to make my year, but it was more of something I aspire to be than something I truly am. Of course I bought it and it is a nice little reminder of how I want to be each time I put it on. I am going to be myself at all times, no apologies.  (probably a little scary for those of you who know me well) Accordingly, I offer some suggestions to people when approaching someone who has a kid with autism/a parent with Alzheimer’s/or anyone going through a difficult time/illness with which you are unfamiliar. How about, “how are things going?” How is so and so doing?” and “Can I do anything to help?” That’s it, just kindness.

You can. End of Story.

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

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

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

 

By way of example…

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

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

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

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

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

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

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

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

 

Always two there are, no more no less. A master and an apprentice.

So I’m quoting Yoda. Does that make me a Star Wars geek? I guess maybe, but I’m really not, I just dig his quirky  little backward way of talking and his intonation. His sayings are clever and provocative. They make you smile just as you say them.  Star Wars has  a significant place in pop culture and I can respect that, for sure.yoda

I am forever the apprentice, never the master, particularly as it relates to Bryan. Recently I had a conversation with a case worker that assists in navigating benefits at work. This man is an Occupational Therapist by education and practice, but he is also a trusted advisor to me. I have been speaking with this man, approximately 2-3 times per year for the last 7 years. He knows all about Bryan, his challenges, his needs and his progress. Another example, for sure, that it truly takes a village to raise a kid with autism. So this man helps me to navigate the available benefits and based on our discussions and his probing, we talk about what Bryan may or may not need for the upcoming year and he translates that into credible recommendations for assistance. One of the benefits of this benefit (ha!) is that this man really tries to understand who Bryan is, although they have not and will not meet, and tries to understand my philosophy in parenting Bryan. He can gauge progress by asking pointed questions the answers which reveal  growth or deficiencies. He forces me to not only think about what we are focusing on now, but the 3-5 year look ahead. Both are necessary and practical, yet stir emotions. Bryan will be 17 this month (there must be a math error) and it’s exciting to see what he can do now and where he can go. So I was describing to this man all of the independent functioning Bryan is doing and all of the great things he can do at home, at school etc. However, and this is the great part, there is always more. Always more to be done, always more to implement, always more to learn. He made two great suggestions. He knows Bryan is very visual, as are many kids on the spectrum, and I told him that Bryan likes a written schedule and also loves his phone and ipad. He suggested we add all of his plans on a google calendar. Duh, I use it all of the time, why didn’t I think of that??? Bryan will love that. So easy, so simple, yet so smart.

Another thing he and I talked about was Bryan’s use of money. At school he has personal finance aka math and he loves it. My caseworker suggested getting Bryan a prepaid debit card so he could pay for things and learn how to use the debit/credit machines. Another fantastic idea, all geared toward independence. My most favorite thing about talking to people who work with or are parents of kids on the spectrum are just these little tidbits we can share. It’s never the big things; we don’t miss those, but those small incremental wins are so fruitful. The student, grasshopper, apprentice in me is awakened by these suggestions and now I’m focused again on the possibilities. Bryan came home from school a few weeks ago and told me he is now going to FAU on Thursdays, “with the big kids”. He was very proud of himself and I knew based on his sense of urgency that the school told  him to make sure he told me. It’s not the rate of progress that matters, only the direction. So much behind us, yet so far ahead. Two weeks we went to Disney, a request by Bryan in celebration of his upcoming birthday. I like Disney but have been there many many times (incidental benefit of Florida residency) and he used to have tremendous anxiety there, even though he loves it. He was not anxious at all. He was over the moon. Jason and I shared a few quick “look how happy he is” moments when observing Bryan. So we decided to go on the Speedway at the Magic Kingdom. You know, those seriously old cars on a metal track. Jason went on his own and I went with Bryan. In my head I really wanted to see how he could navigate the car. He was fine with the driving part, as I knew he would be, but he was so distracted by people; nope not ready for real driving  yet. Years ago I would have panicked that this means he won’t be able to drive. Now I know it just means he will not be driving anytime soon because he’s not mature enough to focus on the road without the distractions. Bryan’s sheer presence reminds me that there is always plenty to learn if you are willing to be a student.

 

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!

He’s got the moves like Jagger!

I’m doing it. You may unfriend me, unfollow me, dislike me, but I’m risking it. No, this is not a political post. It’s something way way way more important. It’s a bragging post, not about me, but about Bryan. Today was the day for parent/teacher conferences at Bryan’s school. He goes to a great private school that serves the neurodiverse community ages 14-22. Bryan is 16.  Last year was his first year and the first year after our divorce. To say he had a rocky start is the ultimate understatement. You know when the headmaster calls you more than 3x a week you are screwed. It was such a reach for him, I really wasn’t sure he could hack it. It took him the whole year but he did a good job and by the end he adjusted.proud

Well, this year, he has completely turned things around. Once a week they go to Florida Atlantic University (FAU) for the day to learn how to behave on a college campus as well as how to interact appropriately. Bryan loves it. He loves to go to the school cafeteria!!! So today, when I met with the teacher who takes him there, she said “Bryan is a rock star at FAU. I am thinking about moving him to the harder class that goes there or sending him twice a week.” Um yay and double yay.  Bryan has always expressed an interest in going to college, and I bet he will. You can never,  ever, ever count out a kid with autism. The surprises, both good and bad, well they never end. Of course I was elated, of course I was proud of him, but more than that, I felt so incredibly hopeful for his future. I met with 3 more teachers, math and language arts,  and then the teacher that does yoga with him and takes him to his part time job at Simply Yoga. This great program at school takes kids into the community for jobs. He is so proud of his job. He folds the mats and blankets, he puts the clothes on display and sweeps. A very typical teenage job!! The teacher told me that Bryan takes on a complete professional persona at the job. I’m kvelling!!! A professional persona!! What? Can you fathom the awesomeness of that? My loud Bryan, who is almost never quiet and has so much trouble modulating his voice, has a professional persona! They also do yoga at school to help stay calm. She told me not only does Bryan do the yoga, and stay quiet, he sometimes leads the class in a few of the poses. If I was not so over the moon,  so completely thrilled, I might have thrown the BS flag at them. Don’t get me wrong, I have been getting reports since school started that he is doing well,  but to go from teacher to teacher to hear in their words how well he is doing with tangible examples, it just fills my heart with so much joy, so much love for him. I came home and told him how excited and happy I was to hear all of his teachers talk so highly of him. Bryan, smart as he is, says, can we get movie tickets? Of course I said yes. I think I would’ve said yes to almost anything.

So by now, if you are still reading, you are either really excited too, or getting a headache from how upbeat I am. Here’s the thing. When your kid has autism, you spend most of your school meetings holding on to the table to brace yourself for the bad news. You brace yourself for the bad school calls and to hear that your 12 year old is reading on a first grade level. You also know that you must enjoy every triumph because things can change at any moment. The lows are very low, but the highs are sweet as sugar.