Saturday, September 20, 2014

Rosh Hashana 5775

Shana Tova ....May Hashem inscribe you in the Book of Life (Sefer Chayim) for a good year....

Tuesday, September 16, 2014

Remembering that you can stand up for yourself too

So I broke my ankle this summer. Not a very pleasant experience, but it could have been worse. If you had to break your ankle I managed to facilitate the best kind of break. I broke the fibula, which is not a weight carrying bone, so I needed no pins and no surgery. (Yeah for me). But I was laid up for 6 weeks, while it healed.

I was ensconced on the couch in our livingroom the entire time. It became my own little woman-cave. Every creature comfort was moved there. My desk was repositioned on a moveable laptop desk. The items I needed from my vanity were brought downstairs and to top it off, I controlled the television (well most of the time anyway).

The best thing was that the boys really did a great job in helping out and being supportive. Of course, there was a little whining and some kvetching, but for the most part they took over my chores including cleaning the kitchen, taking care of the dogs and laundry. Now remember it was not as if they never had responsibilities at home. Of course they did, but when school kicks in, we sort of organize the chores in such a way as to not heighten their school-related anxiety. Even towards the end of the 6 week period, they began to cook dinner as well with a little bit of instruction. They are good cooks too. In truth, none of these life skills were hard for them and they had mastered everything years ago. It's just now a family situation caused everything they knew to be put into practice.

Luckily during the summer there was no school (so no major anxiety), but they did have part-time jobs. CM2 had two entry-level jobs this summer and MrGS worked at the techlab doing projects for his school. The issue was how to get them back and forth, which was resolved with cabs, and the hubby staying home one day a week to drive CM2 to his job across county. Once figured out everything went rather smoothly.

It turned out to be a very good lesson for both boys about growing up. In fact, Mr GS came to me at the very beginning of this odyssey:

"I don't want to give you a guilt trip," he said to me.
"You won't," I replied, "What's up?"
"Well, if I didn't have to do all of your chores for you, I would have more time to work on my apps," he  said, in a very caring and rather concerned tone, as he stared at me trussed up with that huge black boot on my ankle.
"Well, if you were independent, as you said you want to be some day, then you would have to figure out how to get your work done and do all your chores to take care of yourself. So look at this as a learning experience."
"Oh," he responded. Thought about it for a little while and then walked away.
Meanwhile, he decided to nickname me The Invalid, for the summer. In fact, he still uses that term instead of mom. I think he likes it on some level that he can tease me.  Only not certain if its more annoyance with me at this point rather than teasing.

Anyway, I started PT several weeks ago with a therapist that my doctor recommended. I was not thrilled with the man from the beginning as he talked all about his religion at our first encounter. Now don't get me wrong, I hold noone's religion against them. But when I go in for physical therapy I think I am going to talk about my injury not hear about your belief system. Then in the middle of the conversation I suppose he happened to see my Star of David necklace and let me know that in his religion they don't do things like Jews. In fact he told me that his co-religionists pay for things in full, unlike Jews who have to buy everything on credit.

Now what did I say? Nothing. I think I was literally dumbfounded. I could not believe in today's day and age that someone would say something so wholly inappropriate. Listen, I am the parent of two young men with aspergers, so I am used to inappropriate topics and actions, but I really didn't expect it from a "professional." (And yes my doctor is Jewish so, no I don't think there is an antisemitic conspiracy brewing somewhere in my hometown.) I had to make a determination whether the man meant anything antisemitic by his statement, and no I don't think he really did. I really think he didn't even know that what he said was antisemitic. I think he thought he was trying to connect with me on some level and it did not go well.

Anyway I elected to stay with him, simply because my doctor thought he was the better PT in the area. So I did work with him for several weeks. Unfortunately, during this time, my back, with which I have major issues began to act up. In fact, it was so bad I couldn't sit up since it put too much pressure on the bottom of my spine and my knee on the same leg as my ankle couldn't' be straightened without pain due to the arthritis acting up as well. I told the PT this and instead of trying to accommodate my other injuries he poo-poohed what I said. Completely dismissing my pain.  He insisted that it was all related to my ankle injury, which may be true, but there were extenuating circumstances that he refused to acknowledge, which made these areas all the more vulnerable. To top everything off, when he moved my leg and hurt my knee, I moved it back into the old position, so as not to have pain radiating down my leg and up my back, he literally gave me an eye roll as if he was an adolescent.

That was when I had had enough. I called my doctor and asked him to talk to the PT. Explain to him that there is more than the ankle going on with me and he needed to adjust everything accordingly. In truth I was in so much pain with my back, I had to take four days off of PT exercises because I couldn't stand up straight. The doctor mentioned to me that the man was a "professional" and that he may not listen to him. I told him that I would try one more time with the PT only because I had come this far already.

Now when I went to my last appointment instead of taking me, the PT wouldn't let me in the exercise room and told me to go to an exam room. I asked why and got no answer. I decided that being alone with this man was not a good idea. Not that he would try anything untoward, but I did get a really creepy feeling (I say always go with your instincts). I told the aide that I would wait for the PT in the waiting room.

I waited ten minutes, past my appointment, I waited 15 minutes past my appointment. I walked into the main room to see where he was. He had no intention of coming to talk to me. In fact he was working with other people during my appointment time. Now it is not unheard of for health-professionals to be late for an appointment, but this man not only was never late, he generally took me early if I showed up early. So no, this was him deciding that he was going to put me in my place. I turned to his assistant, in front of everyone in the exercise room and told her that I was leaving and that she should cancel the rest of my appointments. When she tried to follow me out the PT stopped her.

In truth I should have walked out at the very beginning when he made that crack about Jews and credit, but I really didn't think he was such a total jackass. As I said I gave him the benefit of the doubt.  I also didn't think that my doctor who is well-respected in his field would send me to an emotionally-repressed-basketcase. Guess I was wrong on all these accounts.

Anyway, I learned my lesson. Go with my first inclination.

I did see my doctor today and he gave me a new script for another PT. I found out that my ankle is not swollen, it is the cartilage and scar tissue trying to heal the injury and that the ankle brace will cause swelling around it. I had stopped wearing the brace because I thought there was something really wrong. Not that the PT ever said that to me. All he ever said was that since there was no discoloration there was no embolism and I should soak my foot in epsom salts (which I did) and then he tried to sell me some supplement crap for myself and actually for my dogs as well. I kid you not.

Meanwhile, I will try this new place. It seems I still have a ways to go in healing my ankle. I need some more support and professional eyes on the situation. Doctor told me that I was to wear the ankle brace with lace up shoes or sneakers, (no Merrill slipons, my bad). I could wear hiking boots if I wanted to, also. So I am going to go shoe shopping this afternoon. YIPPEE. He also told me that it would take 6-9 months for everything to be back to normal. Yuck and double yuck.

I called the new PT place and have an appointment for this afternoon.

I think the moral of this story is that if you would not allow someone to treat your children disrespectfully you should not allow them to treat you that way. I have never been shy about standing up against those that would not give my boys the credence to which they were entitled, and I forgot to do the same for myself. I guess in the end I did cancel my appointments rather than take nonsense, but in truth once the PT poo-poohed how he had hurt me, I should have walked out and should have never gone back in the first place.

Saturday, September 13, 2014

I am the son of a terrorist, Here's how I chose peace

From TED

If you’re raised on dogma and hate, can you choose a different path? Zak Ebrahim was just seven years old when his father helped plan the 1993 World Trade Center bombing. His story is shocking, powerful, and ultimately, inspiring. 

Wednesday, September 10, 2014

If You Put Your Shit Out on the Internet Be Prepared for Criticism

So I left a comment on a blog three years ago. Today someone replied to my comment telling me I need to learn how to read and that I am self-righteous. The article had to do with a mother trying to elicit high-fives for her choices for her autistic child. I did not support her notions.  I told her so and why.  I wasn't nasty or mean, just outspoken in the fact that I disagreed with the mother's choice. In fact three years ago the sister of the author decided to defend her sibling, along with the author's parents (how ridiculous is this). Sibling and parents attacked me. I felt like I was dealing with immature children then and I still feel that way. If you write an article, but can't back yourself up, then something is wrong with your premise. Listen this "lesson" isn't even only for the quietly unknown individual.  I had an experience with a well known journalist who tweeted something nasty about a celebrity years ago. I told him that calling her a whore was uncalled for. He tweeted me back, "Who asked you." I replied, "If you don't want input don't put it out there on the Internet." Why that even had to be said is beyond me....

In writing about autism there are several reasons why people write blogs, articles or comment on the internet. Either they want to learn from others, their child's disability is about them, and/or they want support for their choices. The reactions to discussions vary from some politically correct attack on the notion of free choice, a "how dare you question someone else's parenting choices" perspective, to others telling you that abortion is better for your disabled child, just ask the atheist Richard Dawkins.

The interesting point is that those who wish to learn do not resent that others take them to task, or that others who have experienced raising an autistic child, will offer advice from personal experience. (FYI- none of us need advice from anyone who has never raised a child, or never raised an autistic child to boot. There is something wrong with "autism-unaffiliated" people who need to do this. The ones that give me the biggest chuckle are the malignant narcissists who think they can tell you what to do because they have peripheral knowledge about someone with autism and that ipsofacto that makes them an expert. So ignore those like I do.) I personally have learned quite alot from other parents, autistic self-advocates, special educators and psychologists/psychiatrists over the years. They have helped our family in ways that I think are immeasurable and I quietly thank them for their input everyday. Now it's not that I listened to every bit of advice by any means. In fact some of the advice was way off base, denigrating to our children (the insulting recommendations mostly came from the "professional sphere"), or simply not applicable to our situation. Not everything will work for your family or your situation, but it is interesting to note that even the tiniest bit of off-handed advice may simply be what you needed the most. So do not reject everything out of hand, think about it first and see if you can find some bit of something that might be useful. Also remember that some of the best advice comes from the strangest of places.

Then next, there is the parents who make their child's autism or disability all about themselves and not about their offspring. These parents talk about themselves incessantly;  how what they did for their child affected them and why this was the best for them. You never hear about the child, the issues or how anything was handled for the benefit of the child in question. You never get a sense if the child is happy, fulfilled or progressing. Ignore them. Don't even waste your time there. You can leave a comment if you want, but the time I did that a moderator wrote me back that I was being mean and cruel to the parent. Seriously. I remember the incident well. (Hubby hates that I can do that). A women in a support group had written in that she was so upset that at the end of a nice day when the family wanted to go get ice-cream, her HFA son couldn't decide if he wanted to go with them or stay home. That he stood in the driveway crying about the choice. This mother complained that all she wanted to do was get ice-cream and that it was ruined because of what happened with her son. Well I gave this bitch what for in spades. If you are a frequent reader of this blog you can imagine how un-nice I was. The moderator emailed me that she removed my comment and that people sometimes just need a virtual hug. I told her that I no longer wanted anything to do with any of these people who couldn't see the pain in their child's inability to choose and that I have no need of such selfish parents. They were happy to see me go since I did not follow the woe-is-me parenting perspective that was relished by these moderators.

Then there is the parent who writes in so that everyone can tell them what a great job they are doing with their child. They tell you their choices and then want accolades for what great parents they are. Telling them what they did was inappropriate elicits an infantile melt down. Do they really think that when they put their shit out on the internet everyone is going to agree with them? If you can't handle that people are going to disagree with you, especially when they can be anonymous, then the Internet is not the place for you. Also, why does anyone need some strangers AOK about their parenting choices? Are you that weak-willed and spineless to really worry what others think? If that is the case then how are you ever going to get your child the future they are entitled to if all you do is worry what others think? Do what needs to be done, fight like hell, and tell the rest of the world to fuck off if need be.

Parenting autistic children is not for the weak of heart, mind or soul. It is an all consuming life effecting role that noone asks for, but one at which, we have no choice but to excel. If you are afraid to do your job, your job will never get done. If you worry what others think all the time, your job will never get done. If you are the center of your child's story, then your job will never get done. But if you keep reaching out, trying to learn, study, asking the Good Book and ye shall find...then you will do your job. Now what this all means in the end, unfortunately there is no predictor. Only time will tell.