So, you’re a kid and your teacher says to you, “tomorrow we are having a math test, get a good night’s rest”. Your mom tells you to “hurry up and get ready for bed, tomorrow is your test, get a good night’s rest.” Ok, well anyone that experiences any form of anxiety, for me, I am the queen of anxiety, will tell you that is pure bullshit. No one gets a good night’s rest before they do anything important. Did I sleep well before finals, Regents (if you are in NY you will know what those are), SATs, ACTs, LSATs, college finals, the Bar Exam? Come on, it’s not possible for me to lie down, close my eyes and just push away the coming events. Don’t let anyone tell you differently, it’s not the rest that allows you to perform the next day, it’s adrenaline. It has pushed me along in every thing I do. Not only did I not sleep before I did anything of significance, but I tossed and turned, agonized and had diarrhea. Sorry to be blunt, but it is what it is. We used to joke in law school that you could die from the smell in the bathrooms just before an exam. It ain’t pretty!! So last week I was speaking at a conference in Orlando. There were five of us in one hotel room ( my nephew came too) and there was no sleep happening at all. Four “men” and me, one room, one bathroom??? The snoring and farting were beyond comprehension. Also Jason had a fever and Bryan freaks out from anxiety about rides he does not want to go on and paces, throws up and perseverates. Other than that, it was great. But I am not an amateur, I can clearly function on no sleep. I did my presentation, adrenaline kicked in and I survived. Just another day at the office people.
I can’t take people sometimes. If you follow the news in the Autism world, which for your sake, I hope you don’t have to, you seriously could go nuts. One day they say, if your child had low birth weight or was premature, they are more likely to have Autism. Next day, if your child has a big head, they are more likely to have Autism. If you go on the GFCF diet, your child will be able to speak better and may get rid of all Autism behaviors. Now they say there is no real benefit to the GFCF diet. OMG, stop the insanity. Who the hell knows what works or why?? I’m starting to feel like Goldilocks, this drug does too much and this drug does too little, which one is just right??
And what really bugs me is not that these reports come out, because we want research and accountability, it’s the reactions to these reports. People take these reports like they are a personal attack. “it is the mainstream pharmacy lobby that is against the diet”. ” My child was not premature, they are wrong”. “Jenny McCarthy’s son was cured (by the way, just for complete candor, I don’t believe Jenny’s son had Autism) so mine can be cured too.” Gosh, can’t you people shut up for 5 minutes and focus on your own kid and not worry what one doctor says.
Damn, if you don’t know by now that each person has to read these reports and decide for themselves what works and what doesn’t then you have bigger problems than Autism.
Get it people, there is no cure, no magic serum, try what you can and do you want to but stop judging. Accept your child and love them up. No one knows someone else s kid. I try to live my life, my religious beliefs, my political beliefs, and my Autism “beliefs’ all in the same way, LIVE AND LET LIVE.
So here’s the background. We take Bryan to a psychiatrist for meds. This was a tough decision starting almost 5 years ago and we started with a neurologist at Kennedy Krieger in Baltimore. We reached out because at that time Bryan was pinching and hurting so much Jason and I looked like we were beaten every day. Ok, but here is the thing, the research is limited, and there really are no great meds for treating autism. There is no magic pill so you have to just hope to manage some of the things as they present themselves. For Bryan we need to manage impulse control and anxiety. He takes two meds in liquid form, Bryan takes this with no issue at all. We have always had trouble with him swallowing a pill. He can find anything mixed in juice or yogurt or ice cream. He could be a food/drink analyzer, if such a job exists! In any event, Bryan does not sleep much past 5 or 5:30 no matter when he goes to bed or what we do or how we have worn him out the day before. This sucks for us, big time. We are zombies that catch up on sleep whenever and wherever we can. So the psychiatrist has tried a few different meds to help with the sleep issue. None of have worked so far, at best they make him sleep a little, at worst he gets so irritable he is impossible to handle. It seems that the third med always tips the scale just beyond reason.
So, this week I spoke with the doctor and she convinced us to try one more, an extended release tab that she has had great success with other kids. One slept 13 hours. Now let me just tell you, short of tranquilizer gun, my kid is not sleeping 13 hours on any drug. But here is what happened. The drug comes in an oval pill. He is a big boy, we think he may be able to handle it. We gave him the pill, he spit it out once, then Erwin showed him how to put it in the back of his throat and swallow some water and the pill. And… just like that, he did it. The way we carried on, you would think he won the nobel prize, but to us, these small victories and examples of growth and maturity just catapult us into happy space.
I promised Jason Iwould take him to Target on Friday night to get a gift for his friend’s birthday party. Jason received money for his birthday and has been carefully drawing against this sum every time we go in a store. On the way over there I said to him, let’s get Bryan some gum for doing such a great job with his pill. Bryan loves gum and he grinds his teeth so much, this seems to help a lot. When we got into Target, we passed the display of DVDs. Bryan loves, loves, loves movies and can watch the same one over and over. Jason saw the movies “Robots” on the display and went over and said, “I want to buy this with my money for Bryan since he did such a good job with his pill.” I told him that’s not necessary it’s expensive and we can just get him some gum. Well, he wouldn’t have it. He said it was his money and he loves Bryan, and “Mom, can’t I just do something nice for my brother?” So I say nature and nurture, some of this you can teach or model, but really it’s just him. That sweet, empathetic disposition, just is in his bones. I was so proud of him and his sentiment. When I got home, Erwin had just rented Robots on On Demand, for the same reason. SO, I guess it is in Jason’s DNA.
I do not profess to have the greatest command of the English language nor do I think I am the best writer, etc. However, there are some basic things in the English language that we all need to adhere to. There are rules people!!
Here are just a few of my pet peeves:
1. Your and You’re. Please do not ever tell me “your welcome”. I cringe and it defeats the purpose.
2. Doing good. Really? It’s doing well, not that tough, is it? You can do good, as in charity work, but as to how you are functioning, it’s doing well.
3. Apostrophes. When you send someone a card, don’t write to the Kaufman’s. Write to the Kaufmans. If you’re not sure, try The Kaufman Family. See, there is always another way.
4. Ok, last one for today, have went. Please do not say have went. How about have gone? Geez!!
At work they call me the grammar police, so funny!!
Those of you familiar with “Finding Nemo” may remember this line when Bruce the shark is trying to have a support group with other sharks so they don’t lose control and eat fish. This somehow is supposed to be comforting to Marlin and Dory who are on their quest to find Nemo. What it makes me think of us is that there are unlikely or unexpected relationships in your life that really change you or your perspective. I have people in my life who I would’ve never known or befriended if it were not for Autism. Of course we are all victims of circumstance and meet people at work, etc all based on what we are doing and how we interact. But I’m talking about connections with friends that on paper are so unlikely. One is my friend Renee, she and I have almost nothing in common. I am a NYer , Jewish, liberal as can be. She is from a tiny town in the south (I think they got their first traffic light recently) and is conservative and Christian. She goes to Church regularly and I am not really religious. She and I met through our boys, (she has two on the spectrum) at our local elementary school about 5 years ago. After some brief acquaintance type stuff, we went out with the husbands and it all clicked. We are living, walking, breathing proof, that commonality creates comfort. We laugh together, cry together, and as she taught me, we are on this “journey” together. We don’t talk during campaign season, I must admit her admiration for Sarah Palin did test me a bit, but we have realized that our love of family and our deepest fears for and love of our boys is a bond far greater than anything else. This is just an example, there are others and it gives me some hope for the world. I don’t believe what she believes, she doesn’t believe what I believe, but who gives a crap really? When you are in the trenches you don’t care about someone’s belief system, you care if they have your back.
I am thinking so much about friends today and what gets us out of bed each morning. One year ago today one of my friends lost his 9 year battle with cancer. He was a childhood friend and the last time I saw him was 12/23/2009. These things make you reflect on what is important. My BFF Pammy called last night to say her father had suddenly taken ill. When I saw her phone number on my called ID on my house phone, my stomach went into my throat. It was not our usual venting time and out of the ordinary calls always get my adrenaline going. We have been friends for more than 30 years, and we really “get” each other. We tease each other and support each other and just laugh about ridiculous stuff. She taught me something that is invaluable, you have to laugh at yourself. I am defensive by nature and some combination of her ability to do this herself, and the support of my husband has helped me to find humor in my faults rather than be afraid of them. It’s a gift. I truly believe there is nothing like old friends, the ones that watched you grow up and help to form you into who you are today. Pam was one of the first friends I ever spoke to about Bryan’s developmental issues. She literally brought me in off of the ledge. (I feel like we are Batman and Robin sometimes climbing up the side of building-where neither one of us would dare let go). I mean who the hell ever heard of sensory integration or perseveration? We navigate, kids, life, aging, love, together. She is my fellow shark in the Finding Nemo of life!!
I don’t really believe that all you need is love, but at times it is totally true. Almost every night when I get home from work Bryan comes out of the garage to greet me. So last night, when I got home, he came out and when I got out of the car, he stopped me, looked me straight in the eye and said, “I love you Mom”. Now I know you are thinking, BFD, but it is, because of the delivery. He says this all of the time, I’m lucky, spoiled, etc. But, last night, there was the twinkle in his eyes, a moment of clarity where there was not one drop of autism at all. These moments are rare and must be acknowledged and treasured. These moments are the fuel of my life, they level me and motivate me simultaneously. You have these times where you think, he is all in there, don’t forget it, just because he can’t say something or express himself well doesn’t mean he doesn’t understand every word you say. It’s the ultimate reality check for me. I kissed him and put my arm around him and walked into the house. Then, we went back to crazy normal (that is an oxymoron for use by autism families) where Bryan is yelling for our sitter to leave, gets her keys, phone, etc and literally shoves her out the door. We laugh because he just wants to move onto the next thing, it is not personal, he ADORES her.
Sometimes you get what you deserve. This morning I had a 7:30 am mammogram, who needs coffee to wake you up when you can get your boobies smashed on an ice cold machine on a cool rainy morning. And why do I sweat so much without deodorant even when it’s not hot out? Good thing I put the deodorant in my purse or I would’ve been funky all day. Ok, enough about that nonsense. So this morning, as I often do, I wore one of my autism awareness necklaces. I particularly like this one which is a blue crackly glass puzzle piece and it hangs sort of off center. The puzzle piece is on black cord so I was able to wear it during my mammogram. I get in there and the technician tells me she likes my necklace. I thank her and then here it comes, about 25 questions, on how did I know my son had autism, how old was he, how is he doing now. So I am thinking to myself, geez, do we really need to be talking about this at 7:30 in the morning while you’re squeezing my boobies onto this cold machine to make sure I don’t have breast cancer? But-you get what you deserve, why didn’t I just remove it along with my lovely Target bra? If you are going to be an advocate for awareness this is a 24 hour job. You can’t disassociate just because it’s early or not the topic on your mind. And, truthfully, it’s probably my fault because I started it. I noticed she had an unusual jewish star with a cross inside necklace that was very interesting and I remarked about it. She told me about her recent trip to Israel. What do the kids say, “you get what you get and you don’t get upset”
I’ll shut up now and continue raising awarenes!