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.

Gut check.

IMG_1514This week has been filled with lots of phone calls with friends dealing with all sorts of medical and behavioral issues with their kids. I love to brainstorm with my friends for their kids and I am grateful when they do the same for me. One theme over the years that keeps surfacing is the conflict between what an expert or so called expert tells you and reality. Growing up I always revered medical professionals and really professionals of all types as the ones who were in the know. I could not as a kid or even a young adult think that someone with a real degree, accomplished, could be wrong or not qualified to give an opinion, diagnosis, strategy. Autism. Once you hear that word, it’s a crap-shoot. This is not exactly a newsflash but I feel there is a really important lesson here that needs to be explored. And, it’s not limited to autism. Any medical/behavioral issue that your kid is facing has the potential to make you question everything.

So you take your kid to a doctor, a specialist, a clinician, a therapist. This person is often highly recommended by someone you trust, or they are referred to you for something so foreign to you, that any recommendation feels like a life-preserver. The problem is, they only get a glimpse of what you are dealing with or what you see on a day-to-day basis. We have been to many of these types of appointments for both boys over the years. The problem is that as a parent, and now I may take some flak for this, as the mom, somewhere in between your brain, heart and gut things seem off.  I love examples, so here goes:

  • You go to the psychologist to deal with behavioral issues. For Bryan it can be the constant anxiety and talking. He is forever asking “are you happy?” and says Mom about a thousand times an hour. Psychologist says, I think you will have to start ignoring him. Sounds like an easy fix, right? Just let the kid talk and go about your business, after a while, he will stop if you are not paying attention to him. Oh ok, doc. Here is my response: we have a guest room, please come stay the weekend and show me how you would display this ignoring behavior. Or better yet, come and just spend the evening, I super duper triple dare you. I say it can be done for a short time, but no one can sustain that kind of ignoring.  So while very good and easy clinical advice, the practical application is far from practical.
  • You decide to get a second opinion. It’s something important, something that is nagging at you that you want to have double checked. Typically this could involve a neurologist, a psychiatrist, some sort of MD. You go for peace of mind but you leave with very few pieces of your mind. They want more tests some invasive, some not so much, and they completely discount the previous doctors diagnosis/thoughts. What do you do? Where is the quarterback for your  team telling you how to run this play? What’s the next move? Was the previous doctor an idiot? How do you know?
  • You decide to come up with some strategy to help you cope with a bad behavior. You know it may only be a band-aid, but band-aids are a pretty reliable product. You speak to a clinician who tells you that this is going to help you now, but may be more of a problem later. You shake your head and again invite this person to spend the weekend.

So really, what’s the point of this? Why am I telling you about this stuff? I’m going to tell you. You, the parent, the mom, you are the one who knows. Trust your gut!! Trust the parent/mommy instincts that got you this far. If something a professional tells you sounds too theoretical, too impractical, too difficult, say thanks and move on. We all expect too much. As a parent of a child with autism they want you to come home after work, spend quality time with your kid practicing use of language, do some sensory exercises and, oh yeah, my personal favorite, limit their use of electronics. All day long the kid was receiving behavioral incentives in the form of electronics and then you get home and tell him he can only use it for 30 mins. Good f-g luck to you. The point is being a parent is a lot more about loving and accepting your kid, in my opinion, than being his or her doctor, therapist, etc. Your kid is just happy to have your attention, being together and just sharing any activity is more important than the activity itself. I find my boys are really happy when we are driving. They know that I Iove my  new car and I find if I am singing, yes singing, they know I’m happy. Jason will spontaneously say,”Mom I love you” when he hears me singing. It’s not because I have a great voice, it’s just that he can hear the happiness.

So for some of the heavy duty medical stuff, I say get a few opinions but remember they don’t know all. Anyone that is dismissive of your opinion or condescending needs to be called out on it or immediately discounted. Remember anyone can go to school to learn something, but no one knows your kid better than you.

The Road Less Traveled

IMG_1431Today I read a blog from an autism mom explaining about how sometimes she is angry at parents of typical kids. I get it. Sometimes as a special needs parent you really don’t want to hear how some parents are deciding which college their kid will go to, which car they should get them, blah blah blah. However, in the blog, and certainly how I feel, in the end I would not change my journey. For Bryan’s sake I would like things to be easier for him, but for me, the journey from where I was to where I am now and where I hope to go, well, just wouldn’t change a bit. I grew up pretty spoiled and judgmental. I took things for granted, I expected my life to be on a set path. Post graduate degree/law school, good job, meet a good guy, get married, kids, house, travel, retire, etc. Some things went on a typical path, but most did not.

The real benefit of life is the learning. The ability to draw from past experiences to move forward. However, this persons blog hit a different nerve with me. It’s not so much about the learning and the appreciating as much as it’s about the feeling. I feel soooooooooo much all the time. My emotional capacity for empathy, love, understanding has exploded. Often times this is bad, when I get hurt, I am seriously hurt. But when I am happy and joyful it is over the top, too. Bryan continues to struggle with school and life. I am forced to push myself out of my comfort zone. I can’t manage him the way I used to, I can’t figure what is going on so easily. His emotions and challenges are more complex. He is aggressive and hurtful, yet emotional and remorseful. This has happened in earlier years but I was always able to pin it down to an event. Little kids, little problems, big kids, big problems. I am trying to pace myself and not try to solve everything at once. I am trying to embrace this journey, to be able to accept the pace of things and not worry so much where things will end up. I am applying this philosophy to everything in my life, it does not matter so much where things will end up, no one has a crystal ball, no one can control the outcome, but experiencing and embracing the journey, that takes a certain amount of skill, not my best for sure. I do feel that if I can allow things to reveal themselves rather than worrying about the end result, I will grow and learn. Such a basic lesson, so obvious, yet so challenging. One step at a time.

Own it.

IMG_1415 (1)You know who you are. You people who have contacted me by all forms of media to let me know I’m not alone, I’m going to be ok and “this too shall pass.” This is not a thank you blog, this is an awareness blog; my awareness. One thing about me is that I know who I am and what I need to function. I need support and warmth, love and friendship. I needed to reach out to the collective in order to get out of my own head. I am grateful and humbled by the responses I received, but, what is also great is that it rattled my cage a bit and got me back on track. Enough of the pity party and sadness. Typically I am all action, what can I do next, how will I solve this one? I didn’t have that feeling this time so I’m glad it’s returning. I was more irritated, annoyed, frustrated. I kept thinking, oh finally we send him to a school for kids with autism and now he’s having an issue? How naive of me, duh! The sheer fact that the school is for kids with autism should have revealed to me just how hard it would be for him, how he would need to really up his game. And how amateurish of me to think just because it’s for kids with autism, that automatically means it’s right for Bryan. Every now and then a good kick in the ass is needed for this Mommy. However, I’m happy to report that I am evolving. I am thinking about how to help him day-to-day and how to help him in the event this doesn’t work out. It never is a let’s just try this or that type of thing with autism. Can’t just up the meds and think it will all be ok. Things need to be examined from multiple points of view, physically, emotionally, psychologically, etc. I also like to get perspective from different people on things. Bryan’s Dad and I have brainstormed and we try to be of one mind. Bryan needs some sort of reward based system, some changed meds, and some behavioral consequences. He also needs to understand that you don’t have to like school, but you do have to get control of your body and yourself. Sounds kind of obvious, but typically it’s the obvious stuff that really is not obvious. Autism. What’s easy is hard and what’s hard is easy. Take him for blood work and he doesn’t move, model patient. Take him to the supermarket and all hell breaks loose. Everyone is focused on the triggers, why do you think he’s upset? Why do you think he’s behaving like this? It’s logical to try to find the root cause, but logic went out the window 10 years ago. Not sure if the triggers even matter. What truly matters, in my opinion, is how to prevent escalation. How to give him the tools to get himself under control. No one can control life’s triggers, but everyone needs to learn how to cope with whatever comes their way. I mean we all have to deal with crap and we don’t always know why something upsets us, but we do learn, when something does, what is the best way to handle it. For Bryan, all of this is in slow motion and needs to be treated carefully and with unconditional love.

I do always like to get Jason’s take on things. I asked him if he had any thoughts as to why Bryan was having such a tough time adjusting. I asked him because he knows Bryan very well and because he spends the most time with Bryan. He asked if Bryan had been bullied at school. I let him know I didn’t think so because it didn’t seem like the issues were with other kids.  I asked if he thought the school might be too hard for Bryan, like maybe Bryan wasn’t high functioning enough. Jason said, “what do you mean high functioning, is that like a little less autism?” Hmm I guess so. Good news Bryan’s cognitive skills were not at issue here.

The lesson for me is patience. Not patience for Bryan per se, but patience with the tempo of life. Patience to see if the changes we are making take hold and patience to find something else if this doesn’t work out.

How low can you go?

neverapologizeAll you people who typically read my blog and reach out to support me, yep I’m talking to you. I need you now. Autism sucks. Yep it does and it keeps on sucking in new and improved ways. A few times over the last few weeks we have gotten calls from Bryan’s new school that he has been physical with staff members. Mostly we have been able to get him to calm down or at least get him through the day. He was picked up once before and it was not good. Today I got a call to come get him. He had to leave, no trying to get him to stay. He tried to bite his teacher and was trying to kick her. Have you seen him lately? He’s big, he’s 5’7″ plus (and not the fake 5’7″ that so many people say they are but are not) and at least 170 lbs. He is broad-shouldered and extremely strong. I had to go get him. I was having a tough morning anyway, I’ve been a bit off of my game lately personally and this just pushed me right over the edge.  We already went once to the shrink to get his meds adjusted but it looks like that’s on the agenda for today too. When I asked him what happened he really is not capable of telling me or at least not capable of telling me now. He is too upset, knows he did wrong and is too anxious. He has trouble expressing complex emotions.  He can tell me he’s sad or happy but to explain what set him off and why he lost control, well that won’t be vocalized any time soon. He will be able to give me info or clues later, but they will not be timely. I felt like such a piece of crap going to get him and listening to them tell me how he tried to attack his teacher. When I saw him I wanted to hug him and kiss him and I also wanted to smack him in the head. Some combo of love and forgiveness mixed with frustration and anguish. As with most autism “things” there is no easy way out, no magic  pill, no “can’t you just”. It has never worked that way and never will. My heart is broken. A child’s pain lives in his mother’s heart. I know I will have to dig deeper, try harder, persevere. I signed up for it and I am not a quitter. The hard part is that my emotions are very raw right now and emotions and action can be diametrically opposed. Why does it seem that stuff happens all at the same time? Why does it always seem like just when the dust is settling and you can see the rainbow the rain starts up again?

We went to the doctor. We have a game plan for now which involves going back to a previous medicine that seemed to hold the aggression back. It’s all trial and error. I feel particularly bad because today is Jason’s birthday and although I have a fudge cake for him, we are not going to be able to go out to dinner and celebrate. It’s best for us to just have a quiet evening in. Jason, now a teenager, knows what happened today and has taken it all in stride. He is so happy for the cake, the cards, and the # 13 balloons I got him last night to surprise him. I think I wanted to get balloons to think I still have a little kid in the house. I was excited last week when he told me he lost a tooth. Yay, still has some baby teeth. I asked him if he put the tooth under his pillow at his Dad’s house for the tooth fairy. He said, “the tooth fairy is bullshit.”.  Yep, he’s 13. I was surprised he didn’t hustle me for  money however. For now, pizza and birthday fudge cake sound just perfect.prescription

What would you do?

emojiNot a huge fan of John Quinones, not sure why exactly, but I have seen the show; particularly the one where there is a disruptive child with autism and  you see how people respond. However, the question, what would you do, is a pretty fair one. One of my closest friends called me a few nights ago and asked if she could share a story of something she witnessed. I think it was partly to relay something somewhat traumatic but also to let me know it made her think of Bryan and me. This friend is very mushy and on the occasions she has been with Bryan she has been loving and warm. Consequently,  he digs her. Ok I got off track. So the story goes like this: She has seen a woman and her preteen son with autism once or twice at the local pool. He can be somewhat loud and I guess the mom has offered up to the folks at the pool that he has autism and can say inappropriate things. So far, sounds pretty much like something many of us have had to contend with at one time or another. For me, most people can figure out something is off with Bryan, but because Bryan is so sweet and is always saying “I love you” he often gets a pass. Ok I am seriously having trouble staying on track. In any event, my friend and her friend went into a drug store. When they walked in they saw this boy on the floor completely melting down. The mom was hysterical and the kid was hysterical.  Apparently the kid wanted a watch and the mom wasn’t getting him one and he had a fit. So my friend then relayed how people in the store responded, including herself. It was kind of mix between some folks wanting to help, some observing a sort of freak show, some horrified and some just ignoring the situation. My friend and I then had a long discussion about what should someone do in that situation. Should you mind your own business, should you try to help, should you call the authorities or a doctor? There is no clear cut way to approach this so I’m just going to relay some of my experiences and you can take from this what works best for you.

  • Don’t get paralyzed. If you think you can help, offer it up, “hey do you need some help here?” If you need to watch or look, I get it, it’s a commotion and people want to see a commotion, but look and move on. One time I had a couple stop and watch as Bryan pinched the crap out of me, was screaming and hitting me. They were stopped in their tracks like it was a movie. I turned to them, with my bitch face and said “there is nothing to look at here.” I did leave my shopping cart with its contents and took Bryan home. I am fortunate that when I grab his hand, with my death grip, and even if he hurts me, I can get him to leave a place.
  • Don’t judge. You have no idea who I am or what kind of parent I am or am not. My kid is not misbehaving, he is suffering with his ability to control his body and mind. They are not the same thing. Ask yourself, would I know how to handle a child with autism? You can’t answer unless you have one, and you can’t answer for any other parent of a child with autism because they are all different.
  • Remind yourself that a little kindness goes a long way. One time I was in Target with Bryan and again, another very bad encounter of screaming and bad behavior. I was trying to get him to calm down but some combination of sleep deprivation and pain set in and I started to cry. A very nice lady came over to me and said, “I see you are having a tough time, can I give you a hug?” I literally am choking back tears typing this because I did need a hug and I took it from her and I regrouped and pulled myself together. Kindness rocks!

And….as long as I am on this topic of other people’s behavior, I need to vent a bit. I always encourage people to talk to me about their kids and their development. If your kid is on the spectrum, if you know me at all, you know I firmly believe parenting advice is the best. Here is where I get upset. This is what I get from a lot of parents, you know my little so and so has some issues, a little bit on the spectrum, a little spectrumy, but certainly not like Bryan. My kid has issues but not anything like what you have to deal with and your son’s issues or problems. I mean little so and so has some delays or some speech issues, but not autism. It’s not a contest here. If my child had diabetes would you say, gee my kid’s hypoglycemic, but doesn’t have diabetes like your kid. What the hell!!! Am I supposed to feel happy/relieved for you that you don’t have the shitty autism diagnosis for your kid, or bad for myself that Bryan does? Think before you speak, try to imagine how your words and thoughts might sound to the parent of the kid with autism.  No one behaves well or appropriately all the time; clearly I don’t but awareness, that’s what matters. I am happy to give you any advice, experience I have, but don’t make me feel bad in the process. Be aware of what you say and how you say it.

So, when someone asks you what would you do, say, “I would do the kind thing, I would do the sensitive thing, I would try to help and not judge.” Ok, I’m done!

Sanity Check, Part Deux

I think I need to have a recall on my last blog. That rosy picture I painted lasted a hot minute. Within hours of the publishing of the blog, things went downhill quickly. Midday Thursday got a very unusual and unwelcome phone call from Bryan’s new school. Please come get him, he is out of control, screaming kicking stuff and he just can’t stay. Um, what??? Never, in all of his school years has such a thing occurred. Bryan pinches and can be physical with Jason or me, but NEVER at school. Luckily he was not hurting anyone there but apparently kicked some stuff outside. Not sure of the details, after come get him I had a hard time processing language. I was in a work training program and felt trapped. I called my sitter to go get him, quick triage but in my gut I knew I had to leave. How on earth would I concentrate on anything knowing my boy was suffering. I didn’t need anyone to tell me he was suffering, a mommy knows all. Bryan is so full of anxiety and desire to please, I knew he must have been strung out. I had spoken with him on the phone, tried to give him a little tough love, but I didn’t even sound convincing to me.

His Dad and I agreed to take him to his psychiatrist and we met there with him. This was an acute situation that required a few different strategies, some increased or new meds to get a grip on the anxiety and some behavioral consistency. It is not lost on me that between the divorce, time sharing, a new school, Jason’s upcoming Bar Mitzvah the pressure on him is mounting. He cannot fully express himself with language and as he gets older I’m sure it is more and more frustrating for him. After a good session with the doctor I took him home. I felt like a wounded animal. I just wanted to retreat. I lost it a few times throughout the day and that adds to the guilt; always wanting to stay composed, on top of stuff. At home he was anxious but not as bad as I expected. Four thousand times of “I will do better at school tomorrow. I will have good behavior at school tomorrow” reminded me just how much he was punishing himself. I’m not a bystander, however, I’m his mom and I needed to work it out with him. We lied on his bed and snuggled a bit, I let him know how much I understand how he’s feeling and it’s ok to have a bad day. Kids with autism are never allowed to have a bad day. If they do you get reports home, phone calls, blah blah blah. The pressure is enormous. He took a bubble bath and went to bed on the early side. If sleep can help, yay for that. He is a man after all, and men can sleep after anything!! One day at a time…