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!

Coming of Age

Reflection is a typical outcome of all major life events. Last week was Jason’s Bar Mitzvah; a major life event for our family. As his Mom, the true barometer for success contains three parts: whether he performed the prayers and rituals with skill and confidence, mature and gracious in his behavior throughout the day, and, well,  did he have a blast at his party. I can happily say yes to all three of these parts. Jason was exuberant the entire day. As well as I think I know Jason, I was somewhat surprised by him too. In the last few rehearsals he stumbled a few times while reading, he seemed a little detached from the process. I know most kids are not excited to study their Hebrew for their Bar Mitzvah, but on some level I wasn’t sure if he was taking the whole thing as seriously as he should be. I had uncertainty. I’m not sure if it was just the typical nervous I’m planning a big event nervous, or if there was more to it. Either way, he stepped up and showed poise and composure. His demeanor truly embodied the purpose and significance of the day.

Interestingly enough lots of friends and family remarked at how well Bryan did at the Bar Mitzvah. I have to be candid, really? What were people expecting? I guess at this point I should learn that it is meant warmly, lovingly and not in some sort of judgment. I always go back to the idea of, if he was a typical boy would people say, he did a good job. It’s not fair, I know, but when it’s your kid, the sting of the difference never goes away. In any event, it’s my issue, not others because they love him, accept him and don’t see him all the time. If they offer up their kind words, I need to take that at face value and just be happy all of the feedback was positive.

Another very interesting emotion was with me last week. My mom has Alzheimer’s and while she was there with us and looked beautiful and elegant as she always does, she really was not a participant in the true sense of the word. For Jason, he is used to Grandma and so was just thrilled she was there and although he knows the difference between Grandma a few years ago and Grandma now, he takes every drop of love from her without thought or question. Another great quality of his, he loves fiercely and unconditionally all who love him. Ok I still haven’t gotten to the point yet. The point is somewhere in the day I had this realization that I am no longer my Mom’s little girl. I made the arrangements for the Bar Mitzvah without her, picked out my dress and shoes without her, and worked the room as if I was now a true adult. Sounds sort of silly at 52 but I’ve always had my parents there as parents. I have never had the feeling in my gut that wow, I’m now that adult person standing on my own. I would say this was both a good and heart wrenching feeling.

After the party, Jason’s 3 camp friends from up North and one of their Moms who is a great friend of mine came back with us and slept over. This part of the equation for the weekend was truly a treasure. Jason does not have many close relationships here so to watch him move with ease and laughter with his friends, sharing hysterical and inappropriate camp stories was fantastic on so many levels. He included Bryan in his activities with his friends and the boys were accepting; Bryan, however, was wiped from the day and went to bed early. I got into bed listening to the boys giggle and play video games. I slept well.

Now, a week plus later, it feels like a dream from a long time ago, but the kind of dream that you think about when you are driving, or just before falling asleep and remember with sweetness.