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.

 

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”.

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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A letter to me.

You know all of the clichés; hindsight is 20/20, can’t look back, learn from your mistakes. I get it, no one knows what they don’t know, but it would be so great if you could just go back in time for some basic life lessons. April is Autism Awareness Month, so it’s always time to think about where we are on the journey now, as compared to when we first busted out our compass and started trekking forward. So what would I say to my younger self, the newish mom, absorbing and coping with all things PDD (Pervasive Developmental Disorder), then Autism? I think it would be pretty basic, but as most of us know the good stuff is always fairly obvious.

  • Listen with your heart. Sooo easy to get caught up in what others tell you. “you should try this” or “my kid did that”. Every kid on the spectrum is so different and most of these kids, particularly Bryan, have language deficits and cannot tell you exactly what they need or feel. Trust your mommy gut, feel your way through, it won’t let you down. If you know in your heart something is good or bad for your kid, go with it. My heart never lets me down.
  • Don’t judge. This is probably one of the biggest lessons I have learned. When you see a family struggling with their kid or if you see a kid acting up, don’t judge. I realize now that so many people have all kinds of personal struggles and each person copes differently. Just because it’s not my way, doesn’t mean I should judge that person. I have not walked in their shoes and vice versa.
  • Be open. Be open to new people, new things happening, new ideas. Be open to other treatments and therapies besides established medical protocols. I revered doctors growing up, and still do, mostly, but I learned that I am a smart person and just because you went to medical school doesn’t mean you know all. One little side note: if something looks like it’s too good to be true, it usually is…
  • Always show respect. When dealing with teachers, doctors, therapists, show them respect for their perspective, expertise,  and time. The old expression, you get more with honey than vinegar, rings true here. Each of these people interact with your kid in a different way and have different life and professional experiences. You don’t have to agree, you don’t have to take your kid back to that person, but even the  negative experiences have left me with some little nugget of learning. A very close doctor friend of mine told me a long time ago to see lots of different doctors. Each see different patients and you never know when something may trigger a reference or an idea for you. Autism is not black and white so things are always changing. You have to change with it and keep getting more info.
  • Slow down. I spent my younger years concerned with reaching goals. I still set and like to reach goals but with Bryan and with my adult self I realize the journey, the process, the pace, can be as important as the goal itself. I’ve said many times that raising a child with autism is like raising a child in slow motion. Things that typical kids achieve at a certain age don’t go that way. I have clichés for this too, it’s a marathon, not a sprint, but there is truth here. You need to make peace with the idea that your kid may not do things “on time” or at all, but either way, take a deep breath and enjoy him.
  • Acknowledge progress. Great story from yesterday. Perhaps this is what got me to blog anyway. I took the boys out to lunch with my mom and sister. Nothing swanky, just Toojays (deli/diner in SOFL). We have done this many times. Bryan was antsy in his chair and hungry and just a little off. Lunch was tense and then we left. Jason took Bryan swimming and all seemed a bit better. Around 4:30 Bryan was very agitated and hurt Jason. Bryan likes to dig his nails into us, clearly a sensory thing, and broke the skin on Jason’s hand. Here is where the good stuff happens. It was a little early for Bryan’s night meds but we encouraged him to take them. He did but I have learned that if he thinks you can get over his bad behavior, if you can acknowledge that something bad happened but you can move forward, he can calm himself down. I told him, “everyone has a bad moment. You now need to get over it and calm down.” I have also find that if I get even nicer, warmer, sweeter, he will calm down. If I get angry or upset, there will be a colossal melt down.Hmm, so am I acknowledging his progress or mine?? In any event, my younger self could’ve used this advice, although I have to say sometimes this is way easier said than done.
  • Open up. My parents are/were very private. Too private if you ask me. I learned that sharing with others helps others to share with you. Parents are the best resource for autism and by sharing my experiences I have had others share their experiences with me. Priceless, awesome, fantastic!!!  If you are an autism parent you will know that there is truly nothing better than another parent telling you the real deal on a therapy, treatment, school, etc. On Saturday I took Bryan to Golf Buddies. I started chatting with another Mom who I have known for years, but have not known well at all. I have watched her daughter at all of the buddy sports and she has seen Bryan. We talked nonstop for the entire hour. We tackled major issues, marriage and divorce, school, housing for our kids, etc. The hour flew by and when I left her I had that feeling of community, the feeling of “wow that lady is my peeps” kind of feeling. The warmth of that hour really inspired me to think about how truly lucky I am to have Bryan and all that goes along with him.