Sugar, yes please.

There is truly nothing greater in this world than the joy your child brings to you. While the last week or so has brought some of the greatest highs, I have experienced some significant lows too. I try to keep the highs front and center, but I often find myself shaking my head at some of the nonsense in my life and some of the negativity that tries to latch onto me. One of the challenges I face, as do many others, is juggling all of my responsibilities. I get a lot of “you have a lot on your plate” to which I reply, “my plate is a platter!!” but hey it’s my plate so whatever. Everyone does this, so it’s not in any way unique to me, however, I not only want to and have to handle them, I want to do them well and with a good, positive attitude. I function well at a high activity rate, but every now and then one thing pushes way too far and it’s the straw that broke the camel’s back. I am reminded of that silly board game that was around when I was a kid where you literally kept piling straws in a plastic camel’s back and then when there was one too many and that damn camel fell, you lost the game. ha! Sometimes I feel like that camel (ok, not a great visual) and I’m daring people to put more on. So what happens when there is one too many…? I don’t have the luxury of hiding out from my responsibilities. I do try to do as many fun things as possible as a way counterbalance many of these difficult or upsetting things. Work hard/play hard may be a cliche but for me, it fits. I just don’t want to miss anything!! straw

So yesterday I was at maximum capacity for BS, nonsense, stress, aggravation, responsibilities, etc. A few things have been brewing and a few things have been tugging at me and I was just feeling a melt down come on. Not exactly a meltdown, more of an implosion where a good cry/sob was imminent. One of those times where I wish I had the ability to go home, get into bed, under the covers, and just get into the fetal position for a few days.  No such luck! I had to take the boys to the orthodontist in the middle of the day. Not the best timing, but what can you do; they were taking them at the same time so that helps but after being out of the office for two days last week, I was feeling very work overwhelmed.  They decided to take Bryan’s braces off and while that is exciting and great, anything with Bryan has to be choreographed properly. To make a long story short, we needed some lasering of his gums and some bonding which were all supposed to happen at that appointment when the braces came off. It was not scheduled properly by the orthodontist and that was about one straw too many for me. You see Bryan’s teeth had shifted previously after the braces came off because he would not wear his retainer and removed the permanent retainers multiple times. He had to get his braces put back on so you see this was sort of big deal. While we were trying to work it out, Bryan was so excited to get his braces off. The orthodontist’s office is an open room with many treatment chairs where lots of assistants are working on kids, in other words, a room full of about 12 people plus the two orthodontists who come in and out. Bryan was so elated, he grabbed Jason and me and the assistant and made us put our hands in the middle (as if we were a sports team getting ready to play) and he said “1, 2,3, braces off,  yay!!” We all lifted our arms up in unison. The whole office erupted in laughter and cheers and then I was struggling to hold back the love cry. He completely leveled me. How could I possibly feel anything but joy?? Get a grip Jane. Jason and I giggled and smiled and the whole thing was met with hugs and high fives. Everyone in the office, including other patients, assistants, office staff, doctors, etc. were laughing and smiling. After that Bryan had to have several injections in his palate for the laser and impressions and bonding. He sat like a champ. No anxiety, no squirming, nothing. If you know autism you know one thing: what is easy is hard, what is hard is easy. He never moved for a minute and sat there for his work for an  hour and a half. The minute he got up the anxiety kicked back in and he wanted to know about when he would get picked up from camp in August.

For me, a great reminder that no matter how bad you feel, no matter what is getting you down, that one drop of sugar can make everything sweeter.

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?

 

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.

Going back to the start

Bryanage14 I love that Coldplay song The Scientist, it really touches me. Music always forces reflection for me. Driving to work today, Siri, accessing my playlist on my phone, played My Wish by Rascal Flatts. We used that song in Bryan’s video montage at his Bar Mitzvah. Tears filled my eyes. Today is my sweet boy’s 14th birthday. I keep thinking about how far he has come. He was such a yummy little baby, so well-behaved and so compliant. In a lot of ways he has not changed much. He is still sweet, gives kisses and hugs all of the time, and says I love you all day long. He is ready to go for any activity within minutes and follows a great morning routine. But what is ironic about this age, and his ability to communicate now, is that all of the tools and methods we used to get him to this point now get undone. For Bryan, and many kids with autism, it’s the language deficit that can be the most challenging for family members, friends, and teachers. In the early years of speech and language therapy he had a visual schedule (pictures only in the very early days), he was prompted to do every task, read every line, answer a question with looking in my eyes. Now he has plenty of language and we are working on not prompting, no visual schedule, just conversation. So how do our kids figure out what is expected of them now when for many years you prompted them and now you don’t? How do they know what is next in their schedule when you take away the visual? You see as a parent you are told, and of course unless you are some sort of parent/autism expert, which of course no one is until they have the kid, you listen to what everyone tells you because you don’t know how to make your kid succeed and these are the experts. It’s a tough situation. I am not trying to be critical; just acknowledging the irony and asking, how will new generations do this better? They will do it better because there will be so many adults with autism who will be able to teach kids how to learn in a way that makes sense to them. It’s an extremely exciting thought!
Reading comprehension is always a challenge. So for years Bryan was taught to literally go back to the story and find the answer. Sounds good, right? But since he is so visually focused, he can find the sentence or two to answer the question, but he still does not really know what the story is about. So instead of using the visual, it’s time for him to read a story and then think about it and answer the questions. He has to tell the story from memory or at least the gist of it. So now, my boy who always worked so well with his visual skills, must now use his auditory skills. This is the thing…So he learned for all of these years one way and now he has to move on to learn another way. At first I found this so frustrating on his behalf. But as time goes on I realize, duh, this is just the process. You cannot run before you walk. I am good with this from a clinical perspective, but from a mommy perspective it is both good and bad. It’s good that he is learning and is growing and adapting, but bad because he must be very confused. I wonder what he really thinks about things. I do know that Bryan is a tremendous people person. He responds very well to people he knows have genuine love and affection for him. You can’t fake it with Bryan. You can’t pretend to love or like him; he will know. I see it on his face and can tell when he is not trusting. If you get a lukewarm response from him or a blow off it’s because he either doesn’t know if you are trustworthy or he doesn’t know where he stands with you. It’s so interesting that some of his best skills are intuitive and social on a spectrum where socialization is considered almost non existent. Now that he is a big boy of 14, looks, smells and speaks with a man’s voice, life is scarier than ever. The questions that seemed so far off, will he drive a car, will he go to college, will he have a job, they are not so slowly creeping up. I can no longer say, “oh he’s so young, we’ll see”. We are at a time now where we must empower him and ourselves for the impending adulthood. We did still get him a cookie cake for his birthday, so we are not quite there yet, thankfully!

Timing is Everything!

There is this thing down here in Florida, not sure if it’s everywhere so I hope I don’t sound ignorant. It’s called the medwaiver list and it’s something you need to get your child with a disability on so they can get some government funding. Literally speaking: Medicaid Waiver Programs allow recipients to ‘waive’ institutionalization and instead choose to direct services to assist them to live in the community. It is administered through the Agency for Persons with Disabilities (APD). I have avoided doing this for a long time because there is a waiting list of thousands and no real money has been devoted to it yet. I have felt guilty about not doing this and I was somewhat pleased to learn that many of my “autism mommies” have not done this either. There is coordination of paperwork and an intake meeting that involves bringing your child. I once went to a meeting about doing this years ago but somehow I felt it wasn’t worth my time. A close friend of ours and terrific advocate recently called me out on this. He let me know it was not ok to avoid the list or not get your kid signed up. So I faced it, went to the website downloaded the application and sent it in. Not long after I received a letter stating that I had to schedule my intake meeting, bring a long list of documentation and Bryan. Ok, I can do this, no big deal. I was feeling proud of myself and grateful to our friend for giving me the nudge I needed. I don’t typically even need a nudge for anything, but it was one of those risk/reward assessments I do in my head so it got pushed down in priority. Bryan and I went to the intake meeting last week. We had a 9am appointment and often Bryan is anxious if he doesn’t know what to expect. However, alone time with Mommy on a weekday morning, without a doctor’s appointment is warmly accepted by Bryan and so he was calm and delicious on the drive to Fort Lauderdale. We were taken right away and we sat with the Human Services Counselor, a very nice woman, in her tiny cluttered office. She went through all of our papers and let us know what was needed as far as follow up paperwork. Then…… she decided to ask Bryan a bunch of questions. Not one or two questions, but many, about 10. Here is the kicker, he answered them all calmly and correctly. Now, maybe for your kid this is easy, but not for Bryan. The questions were not complex, “what is your birthday”, “what is your address, phone number, etc.”. These questions were questions that all teenagers should be able to answer, and I was confident when sitting there that Bryan did in fact know the answers. The issue really is more about whether or not he would be forthcoming with the information, if the speaker would ask the questions slowly and clearly enough for him to understand and how many questions would he tolerate before he screamed or said “no more”. Bryan has a saturation point where he will no longer stay tuned in and when you reach it, trust me, you will know. But on this day, for this woman, who in essence was somewhat gauging his disability, he answered questions easily, correctly and confidently. He is often very soft spoken when answering questions, although quite loud most other times, and for this interview his tone, voice level, were appropriate. At the end she said to me, “he was so well behaved”. Now, the real true mother in me was beaming with pride. I have taken him to dozens of these types of things, interviews, psychologists, speech therapists, etc. where he has not answered or provided an answer that was completely inappropriate. But, the inner comedienne, the inner autism advocate mom in me, was saying NOW you answer everything right? Now, when it’s ok to be “disabled” or where some modicum of judgment by this woman might put your paper on one pile (needs lots of aid) vs. another (pretty good, don’t worry about him) and now you have to be sooooo awesome. It’s just irony and of course the real mom snapped back and felt proud. We walked out, and as always, Bryan put his arm around me and said “I did a great job with the lady”. We got into the car and I took him to school. During the ride Bryan was somewhat quiet. I wanted to ask him some things but he is rarely quiet so I try to leave it alone. I took him to the front door of school and signed him in. I watched him walk away and thought to myself how far we have come, how he senses from me when something is important or when we are doing something for his benefit. He knows that if Mommy takes off work to take him to an appointment it means it’s important. He also knows time together on a Tuesday morning is special, just like him.

Ogres are like onions

shrekIf you have seen Shrek, you know what I’m talking about. Ogres have layers. Onions have layers. Time to peel back and examine my thoughts over the last week. I almost titled this blog Working the Fan Club, Part Deux, but just couldn’t do it. Bryan had a really great Thanksgiving, that is autism parent speak for we had a really great Thanksgiving. Sometimes we just don’t know how much progress Bryan is making until you see it on other people’s faces or in their comments. We went to my cousin’s house for Thanksgiving. We had gone there two years ago too. To us, Bryan is always making progress, but to qualify or quantify it is difficult for us. It’s like you know your kids are growing but until you see the high-water pants, you really can’t see the changes or at least they’re not obvious. The thing is there are layers to autism and I think about where Bryan is all of the time. The hard part is that it’s all relative, and sometimes you need someone to remind you that your or I should say Bryan’s relative place is pretty damn good. On Thanksgiving, at my cousin’s house, I barely heard Bryan. He was there, of course, and ate, of course, turkey and soda, as promised, but he wasn’t extraordinary. In fact, his behavior was quite ordinary. He played upstairs with the other kids, he rough housed with the other boys, his teenage cousins, and played video games.  A few of my cousins, unprompted by me (which of course is the best part) made a point of letting me know how well they thought he was doing. They reminded me of how tough it was for him to be patient, be quiet, enjoy his day just two years ago. Two years ago he was so anxious about going home, eating, dessert, etc. This year, he was there, but he had matured. It is not possible for me to even attempt to describe the emotions associated with these comments. Everyone loves to hear that their kid is doing well or behaved nicely. When someone acknowledges that your special needs kid behaved like a typical kid, well you feel great, but you also feel guilty. Somehow I can be incredibly happy at the same time feel ashamed. Is the goal to be typical? No it isn’t, but to have a fun, unremarkable Thanksgiving from the autism perspective, I’ll say it’s a triumph.

The other night I was up in Bryan’s room with him at bedtime. We have our little private things we say. We do movie lines together from Shrek and the Incredibles. I know you are not supposed to encourage the kids with autism to use “scripted” language. However, these are our private jokes, our goofy moments when we are mother and son just sharing a cuddle and a smile. The thing about parenting a kid with autism is that you are truly always guilty. Shouldn’t you be working on language and reading comp all day ever day? Shouldn’t you force him to answer questions in complete sentences every time? Well I say no. I am allowed to just be his mom. I am allowed to just love him as he is and not have to work on him all of the time. I read somewhere that it’s a good sign of trust if you and your child have some sort of private jokes or signals. I have this with Jason and it’s very natural. I realize that my little movie line sessions with Bryan are the same. To lie in bed with a giggling Bryan is a great joy.

Recently there has been debate about Autism Speaks. Apparently one of their founders made some comments in an editorial about how autism is an epidemic or at least it should be treated that way. One of the board members of Autism Speaks quit, basically stating that Autism Speaks quest for a cure negates the value of people with autism as they are. This is my interpretation of what happened, not literal at all. On the listserv I participate in there has been great debate about the different perspectives on this and Autism Speaks. Are we saying we want a cure equals we don’t think our kids have value as they are? Is there really an epidemic here or are we all just not “accepting” people with disabilities or people that are different? I don’t think these concepts are mutually exclusive. Working toward a cure may be a bad way to look at it, but looking for medical assistance to make someone’s  life easier is certainly important. Equally important is to accept people with autism the way they are. It’s just not black and white and what really bugs me is that people with autism and people who support autism are at odds with each other about the proper approach. We need research, we need treatments, we need community support, we need it all. We need to embrace all of the things that are possible medically, emotionally, etc. We need to support each other and not judge each other’s support for various treatments, methods, etc. So when you peel back the layers aren’t we all the same in the middle?

Working the Fan Club

?????????????????????????????????????????????????????????????????????????????????????????Blah blah blah Thanksgiving. I know it’s the best holiday of the year, not religious, for all Americans, etc.  I love the traditional Thanksgiving meal and all it represents in terms of giving thanks and appreciating all you have. For many special needs kids the holidays can cause a lot of anxiety. What is expected of me? I feel like that question is on Bryan’s face very often. Crafting an appropriate response  is the essence of communication. Am I supposed to respond? What exactly are you looking for? Bryan always knows a response is required but the kind of response required can be difficult for him. At holiday gatherings  people are often uncomfortable; there are heightened expectations about behavior from everyone. For me, I try to work on myself regarding Bryan and not worry too much if he is anxious, he is a young man now and for the most part he can hack a few hours at a family event. He tells me every day where we are going for Thanksgiving. We are going to my cousin’s house and he is sooo excited. I asked him what do you like about Thanksgiving. His response, classic Bryan, was “turkey and soda”. Love it! Truthfully Bryan will always be focused on food, but more importantly he will be focused on family. He truly loves when we are all in one place, and he feels the love and knows genuine, heartfelt warmth when it’s impressed upon him. Often kids with autism, particularly Bryan, use associations to communicate rather than actual conversation. What’s the difference? Well if Bryan sees someone he knows he will tell them the last thing that they did together. For example, if he sees some of my cousins he will say, “you came to my Bar Mitzvah”. That is Bryan speak, for hi, how are you? I love you, I miss you,I acknowledge you. You see the conversation starters are not easy for him. However, what is more delightful than seeing someone who greets you with something relating to the last time you saw each other? The great thing about my family is that they dig it. They love his little quips and his trips down memory lane. They embrace his uniqueness and we are forever grateful and humbled by it. To know, as a parent of a special needs child, that your family holidays are a safe place for your kid, well that’s truly something to be thankful for.

Years ago we were at one of my cousin’s house for Break the Fast on Yom Kippur. Bryan was probably around 8 or 9. They always had a ton of people over and it was good for us because there were so many kids around it felt warm and secure for us and the boys. Bryan decided to go swimming in his clothes. Some of our family was very distressed by this and gave us some crazy looks. What I always remember about that was my cousin’s teenage kids. They laughed and joked about it. They did not do this in a teasing way, but more of an appreciation for his cleverness to get in the pool and sort of avoid holiday stuffiness. I was a bit stressed at the time but looking back on it all I can do is think, wow, he would never do that now, he’s grown a lot. And for the kids that were there, well, they just love him for being Bryan. At our celebration next week a lot of those same kids are coming in from college or getting ready for college. They have matured, moving on to the next natural stage of life. While I admit I absolutely love hearing about their new adventures, new friends, and life experiences, it always stings just a little bit. Somehow that, what will Bryan get to experience is always stuffed down there somewhere and I have to stifle the urge to let it surface. I remind myself, that his path is his path and we just have to take it slow. Perhaps a few holiday cocktails and a few good laughs will ease the way. Bryan, however, will not be worried about anything except dessert and what time we are going home. Happy Thanksgiving!