An elevator speech can be a really useful tool to have in your arsenal. I have several, depending on the situation, but I thought I would share just this one with you, dear readers, in the hopes it will give you some ammo when trying to get through the day. What is an elevator speech, you ask? It is a quick, couple of sentences speech that explains something complicated in a simple way in about the time an elevator ride would take. People have short attention spans, and talking about disabilities in general can make most people extremely uncomfortable. I have found when working with others, if I start talking about autism, they are likely to roll their eyes (here she goes again!) or change the subject quickly, or most often, people are inclined to believe that “autism” is not really “real” and it is much easier to believe that I am a hypochondriac, or a spaz of some sort, rather than wrap their brains around what we are really dealing with. It baffles me, but often people do not think that autism is a very serious disability! After all, she looks totally normal, right? Very often I have had the experience where people think that if only my daughter had better discipline, or would only “pay attention” she wouldn’t have these problems, and so obviously it must be my fault, since I am, you know, a crappy parent. Most of the time I try to limit the amount of time I have to spend with such people, but sometimes it is necessary to enlighten people who will be working with your child, or relatives who will be interacting with your child, who have resisted your efforts to educate them, so that they can understand what is going on. Here is one of my speeches, which deals mostly with sensory issues, but it can be adapted to what your child’s needs are:

Autism is like being deaf, dumb and blind, but in subtle ways. It is like being deaf because background noise like florescent light bulbs and fans can severely limit how much she can hear. She can’t process them or filter them out the way we can. Also, loud noises can cause her physical pain, and cause her to “shut down” or act out. She is also deaf in a social way. Sarcasm, humor, and other abstract social cues are impossible for her to hear. It is like being dumb, because she has severe limits on what she knows how to say. (Readers: please keep in mind my daughter has Asperger’s, so she has lots of speech.) Many people with Autism cannot speak at all, but my daughter has great difficulty getting the ideas in her head across in an understandable way. Communication is very limited because autistics don’t process spoken language very well or quickly. It may take her up to seven seconds to process what you have said to her, she is not ignoring you or being insolent, she is merely processing what you just said before she can answer. I find counting to seven in my head very helpful. It is like being blind because she has actual vision impairments, like seeing sparkly dots which cover everything ( which is a classic mercury poisoning symptom) and she also has no depth perception to speak of. The lack of depth perception makes moving around a room without bumping into things very hard for her. She is also blind in another way- she can’t “see” social cues the other people can. Facial expressions like disapproval or teasing don’t mean anything to her. Giving her a meaningful look doesn’t compute. If you need to communicate something like that to her, you need to tell her straight out. If she does something that you find offensive or inexplicable, please remember that she is really blind, deaf, and dumb in all kinds serious of ways.

There you have it- short, sweet, to the point, and dumbed down to the lowest common denominator. If it loses something in the way of accuracy, that is ok in my book, because this is not a speech you give to someone who is really interested in that facts of autism, this is a speech you give to someone looking for an easily digested sound bite, to convey the seriousness of our endeavor. I have printed this out for teachers, and given it to relatives who thought I was being over protective when my daughter didn’t want to try water skiing, and I didn’t “make her” try it, since I was the only one who knew how terrifying it would be for her. I have also used bits and pieces of it in situations where someone has made an insensitive remark, to educate them. Good luck, friends. I hope you can come up with a good elevator speech- if you think about it, you probably already have one. Writing it down somewhere can help you organize it into a really sharp, incisive tool that is hard to argue with. Speaking with the authority that comes from being prepared, and sounding like you know what you are talking about, can be priceless.

Sometimes I feel like if I have to read one more article about autism, I am going to just explode. One more huge meltdown and I am through- I’m going to throw in the towel, get in the car and just drive to some remote town, change my name to Gladys, and become the small town waitress in the diner with the mysterious past. I would never have to deal with anything more complicated than whether or not table 6 wanted fries with that. Occasionally I find myself sitting on the sofa just staring at the wall. I am so drained, I can’t do anything. I think most parents of autistic kids struggle with stress and depression.

What do you do to relieve stress? How do you recharge your batteries after a long day of battling autism? (send me your ideas.) I thought it would be good to make a list of things to do, (and NOT do) when you feel like it is all hopeless. I have found that just getting moving helps. NOTE: If you are the kind of person who is good at taking care of yourself, you will not understand what I am getting at here. This list is for those of us who kill ourselves taking care of other people until we are so sick we can’t get out of bed for three days. You know who you are. The idea here is not to be selfish and let everyone else go hang, but to remember that Mom and Dad have needs too, and they have to be met at least some of the time, or they can’t effectively meet anyone else’s.

What NOT to do:
Just for one day, I decide not to:

Read any articles about autism.

Listen to autism 1 radio.

Talk about autism with a support group.

Bake elaborate GFCF pastries.

Turn on the answering machine, and take no calls from doctors, principals, teachers or interventionists. In fact, I don’t answer the phone at all unless it is my sister who makes me laugh.

Don’t watch mindless TV or surf the internet. I find it makes it worse.

What to do instead:

Sit in a sunny window especially in winter. The vitamin D you get will make you feel better.

Worry about your own diet for a change. Cut out the coffee, pop, or what ever stimulants get you through the day. You will handle stress better without them. Make yourself a decent meal.

Rent some movies that are stupid and funny, especially ones from your youth before the trek with autism started.

Get outside and walk around a park or something. I find it is hard to be depressed if I am moving around. Hard physical labor helps too. Change all the sheets on all the beds, or clean the garage or something. You get the double pick me up of moving and having accomplished something.

Go to church. Pray. Some days take Divine Intervention. Have faith.

Do what makes you laugh. Laughing is very important. Have you noticed that people with autistic or otherwise mentally challenged children have a “look” in their eye? It is the look of someone who knows that life is deadly serious, every day. Being deadly serious every day will crush you. Go buy a “Get Fuzzy” book, read some Terry Pratchett, head over to www.cuteoverload.com or www.cutebabyfix.com. Smile sometimes.

Turn on some of the music you listened to in high school, and dance all over the house while you clean up. It is seriously funny to try to be stressed when Frankie is admonishing you to RELAX.

If you can find a babysitter- go out on a date with your spouse. The divorce rate for parents of autistic kids is over 80%. Go to the movies, take a walk- just make sure you talk about anything other than autism for once. Turn in early for a change…know what I mean? Take some couple time and guard it jealously. Your children will need both of their parents, so do the work necessary on your marriage to keep it together.

Take your kids outside and play with them. Build a snowman or fly kites or something. Try to remember that you like them:)

Work on your hobby- you know, that thing you used to do before you focused your entire life on autism? Knit, or paint or build something beautiful. Doing something creative really helps me unwind.

Put the kids to bed early after they ate their nutritious GFCF dinner and order a pizza.

Do something for someone else. This one is powerful medicine, and must be used wisely. Some of us spend every moment of ever waking day serving our child- this may not be helpful for you. But I find I can take my problems off my mind if I focus on serving someone else, like a sister or a friend.

It seems counterintuitive, but it works.

What do you do? Send me your thoughts and I will post them!

or how a spoonful of courtesy and common sense would do us all a boatload of good.

Every once in a while I get on the blogs and start reading about other people’s journey through autism with their family. It is interesting, but usually baffling to me how much venom and energy is wasted on these forums discussing controversy and ideology. I can’t get on board with any of it- I can’t stand the holier than thou neurodiversity people who look at their autism as an asset, they seem to be in denial to me. I have problems with anxiety, but that would certainly be the last thing I would want to define myself with, and I’d be happier without it. I also can’t stand the rabid parents on the other end who go on and on about finding a cure, and who are into all kinds of activism. I kinda think their time would be better spent with their child? Then there are the parents who turn their noses up at all of it and pat themselves firmly on the back for being sensible enough not to fall for any crazy alternative medicine scams. Keeping your mind firmly closed is about as useful as leaving it so wide open your brains fall out. I can’t help but wonder why there can’t be more civil discussion about what works and what doesn’t.

We have a really interesting set of circumstances at our house: Our daughter is high functioning, and has speech. Lots of speech! (In fact she loves reading the dictionary.) But on the other hand, she had sensory issues that were much more severe than most kids who are as high functioning. When we try therapies with her, she is better than most at telling us how she feels and what works. Also, her brave daddy shares some of her issues, and so he gladly acts as a guinea pig for new supplements and therapies. Because of this, we have been able to try out therapies and really gage their usefulness.

Plenty of people will go on for hours on their blogs about their opinions about how pointless and dangerous chelation is. They will be happy to explain to you that autistic kids don’t store mercury. Where’s the proof they shout- they will listen when there have been 20 duplicated double blind placebo controlled studies. Well, I say, the proof is in the pudding. Initially, we were skeptical. I think healthy skepticism is a good tool. But we did not form our opinion based on nothing. We did our homework and finally settled on Dr. Bradstreet for our daughter’s doctor. He had the right combination of an open mind while being firmly conservative. He suggested she have some chelation. We proceeded cautiously. We were careful to protect her with vitamins and minerals. What happened as a result is nothing short of a miracle. In a nutshell, our daughter’s sensory issues went away. All of them. I don’t mean they were lessened, or that over a period of three years we saw improvement- what I am saying, is within a week’s time, her sensory issues evaporated. She started telling us things like, Mom, I have a strange tingling in my fingers. The strange tingling turned out to be, um, feeling. We had been struggling for years with her handwriting. Her teacher at school, called me in a tizzy and asked us what we had done- Dorothy’s writing was miraculously beautiful! Turns out being able to feel your fingers helps your handwriting considerably. She started feeling pain- she could have an injection and not feel it before. She stopped bumping into walls and tripping. She told me that before chelation, she had trouble seeing because of all the dark lines and “sparkles” covering everything. (By the way, skeptics, seeing sparkly colors is a classic symptom of mercury poisoning.) Once she had the chelation, the dark lines and sparkles disappeared. Our daughter has a whole new way to experience the world. For those people who are contemptuous of attempts to make our autistic kids “normal” all I can say is, how can you argue with this? She loves her new found vision and abilities. We took her to the optometrist, and her glasses were now too strong. For me, the proof lies in whether or not it helps. When we looked at her before and after bloodwork, we were shocked at the amount of mercury she dumped. It was breathtaking to us. Chelation gets our stamp of approval. So the question is, why are we to be vilified for having a happy outcome?

Another controversial topic is the gfcf diet. I read a blog today from a father who seemed like he loved his autistic son more than anything, but he then went on to deride parents who “deprive their kids of normal food.” He seemed to think that the gfcf diet was just grasping at straws, and parents who used it were abusive. Well, my question from the beginning has always been, well, does it work? I can say affirmatively that it does work. My husband uses it to keep himself off the spectrum, and as for my daughter, she is a teenager now, and will tell you herself, when she has eaten something that is off her diet, she feels “buzzed” and “wiggy.” I know from watching her she certainly is calmer, more thoughtful and more social when on her diet. This father who was so contemptuous of parents like us goes on to lament his boy’s lack of speech- but he is not willing to sacrifice anything to help his boy find speech- I find that to be very sad. I have heard from other parents that their child’s speech improved dramatically after gfcf and chelation. We are not interested in the politics of autism, we are interested in results for our daughter’s well being and continued improvement.

Another topic that seems to get a lot of copy on the Internet is how upset people get about having to “fake it” and try all day to be someone they are not. Generally this is an adult Aspie who is talking about having to “behave” neurotypical all day long and how wearing and tiresome it is. They also like to complain about how awful society is for not accepting them for who they are. This group also seems to have some support from parent groups who deride any effort on the part of parents to “normalize” our children. I must be really slow on the uptake but I thought that was what parenting is? I don’t understand at all how teaching my daughter manners and how to be civil in society is a wrong. How is giving her the skills to get through a job interview wrong? The job interview is a perfect example of what I am talking about. I am not autistic. However, I am an artist, and a bit eccentric. I like to wear wacky clothes and ridiculous jewelry. If I was going for a job interview, however, I would swap that all out for a very boring business suit and sensible shoes. I would be on my best behavior. I would curb my tendency to laugh too loudly and scribble on everything. This is certainly “faking it” on my part, but it is by no means something above and beyond the call of duty, it is called being civilized. It may be difficult for my daughter to learn to keep her finger out of her nose in public, but it is certain necessary for her to do so if she wants to achieve her goals. I don’t think there is anything “unauthentic” about learning to discipline yourself.

Our high functioning children need to learn to adapt to society with out losing a bit of who they are inside. Part of that involves embracing autism, but I think too many people stop at the embracing part. We can empower our children to acknowledge their autism, and then become its master. The other night, we were at the regional spelling bee. My daughter was nervous, just like everyone else, but because she is autistic, she started making some random noises. I asked her: do you want to go up on stage tonight? Yes, she says. Well, I explain, they are not going to allow you up there if you are making noises. It would be too distracting to the other children. They wouldn’t be able to spell. Do you think you can stop? Yes, I can she says, and stops. We joke about getting her game face on, which is code for “acting normal” She gets it on. As she leaves me to go on stage, in front of a huge crowd, I whisper to her, remember, honey, you are autistic- you have such an unfair advantage over all those other kids! Her eyes twinkle because she knows her savant memory will leave all the other spellers in the dust. She placed pretty well, her nerves got the better of her in the end just like all the other kids who didn’t win that night. Being in the Bee at all was a huge success for her. She wanted to do it so badly she practiced for weeks. Would it have been better for her to remain “Authentic” and not have been able to participate?

The people who accuse parents of wanting to only normalize their children are just baiting people for attention. It is nonsense on stilts. I have never met a parent of an autistic child who wanted them to be any thing but happy and healthy. As for me, my daughter has absolute freedom to be as amazing and fabulous as she wants. In fact, now that we have been through all the treatment protocols and have her diet firmly in place, we are seeing more and more of her personality shine through, and the autism is fading into the background. Is she cured? Well, that is a loaded question, too, isn’t it? I would say, yes and no. I feel we have put her disease in a sort of remission, but there are lasting effects that we will always have with us.

I think I understand the anger and desperation which fuels a lot of the debate out there- I just think it is unproductive. Instead of focusing our energies and passion on ideology, I think it would be better if we focused it on compassion for individuals fighting a hard battle every day, parents and children, adults with autism and their families. One post I read today said parents who get online and complain about their life with an autistic child should be ashamed of themselves. How terrible they are for not loving their child enough! In my experience, parents of autistic children love their children desperately. But their battle with exhaustion, depression, stress, divorce, and constant crushing heartache is never addressed compassionately. The parents have needs too. They are judged as often as the children are. I think it would be better if we could all be nicer to each other and try to find some ways we could all buoy each other up instead of tearing each other down. But until that perfect day, it would probably be wiser if we all followed my Grandmother’s advice, if you can’t say anything nice, don’t say anything at all.

One night I was sitting at my computer, utterly exhausted and crying. It had been a long day with autism at our house. She was finally asleep, and I was doing what a lot of us do, frantically searching the Internet for anything that would shed some light on what on earth we were supposed to do to help this child. Grasping at straws. After a few hours of turning up nothing, I typed Autism sucks into the search engine and hit enter. The only thing to come up was a simple white page with a few paragraphs. It said something like:

“Yes, autism sucks. Some days are really hard, and you wish you were all dead, but other days are happy- your kid learns to tie their shoes, or use the bathroom, and you have a triumph. Good days will happen, treasure them.”

This page was not connected to anything else, it was a stand alone page. Even though I don’t remember exactly what it said, it was a beacon of hope to me that night, when we were passing through very dark days. I have never been able to find it again- it was like a special message just for me on the night when I really needed it. Whoever put that out there- thank you so much for hope. If you are a person who has typed autism sucks into the search engine I hope I can send you the same message. All is not lost, you will look back and see the successes and be amazed at the difference your perseverance has had for your child. Try to remember how much courage it takes for your child to do the smallest things. I have really been inspired by my daughter’s courage. When she went to kindergarten, she used to come home and lay on the floor, and cry and say Mommy, how can you send me there every day? I hate school! Now, she steels herself and plunges into a noisy, scary Junior high every day. Teachers and students do not understand her, and many are cruel, but she is brave and goes anyway. And she is successful. Her grades are high, and she has a group of kids who she sits with at lunch. She successfully invited a friend over, all by herself. For us, it doesn’t get much better than that!

Our little girl has Asperger’s, so she is higher functioning than some, but there was a time when she spent most of her life on the ground, screaming bloody murder. This week, she placed second in the county Spelling Bee, and tenth at the regional bee. She did this all by herself. She only forgot which way to go on the stage once, which was not that big of a deal, and she self corrected it during the next round. Will she be able to go to college? Will she be able to live on her own? I’m not sure. We will cross that bridge when we come to it. In the meantime, we are going to keep buffing up her shiny trophy and move on to her next big accomplishment.

Don’t give up. Never, never give up. It will be worth it.

I was asked on one of the forums to discuss our experiences with the Low Oxalate Diet (LOD) - and thought I would post them here as well. I have to start with a disclaimer that we don’t fully follow the low oxalate diet… When we were last at our DAN Dr. (Dr. Bradstreet in FL), he recommended cutting back on our oxalate consumption - challenging us to cut our intake in half. His common sense advise was to cut out all nuts and to avoid eating LOTS of the high oxalate foods. It’s actually been a fairly difficult thing to do - especially since my daughter has ~40 other food allergies that all seem to be low-oxalate foods!

We cut out nuts 100% (so no more yummy almond meal in our Ozma Mix), stopped using lemon and orange peal in our cooking (supposedly they are super high), and started cutting back on potatoes and parsley. The hardest thing has been trying to cut back on carrots and celery, which we put in the kid’s lunches and in soups, salads ans just about everything.

It’s been hard to tell how much of a difference keeping or breaking the LOD makes. I know when I go off it (ie: I eat a whole bag of potato chips in one sitting) I seem to be a bit more ‘foggy’ the next day - but it’s a more subtle reaction than when we have a GFCF breech.

The list I’ve been using to gauge how high or low different foods are is online at: http://patienteducation.upmc.com/Pdf/LowOxalateDiet.pdf

As we were refreshing our budget for this year, I tallied up our monthly supplement costs, so I could try and work it in. Here’s what we are currently giving her:

Now, that is a good chunk of change for us - over the holidays, we were watching TV at a relatives (we don’t watch much at home) and I saw an advertisement for a BMW with the same monthly payment…. so we now have the new joke that Dorthy is our “Beemer”. We’ve tried trials phasing some of these out, but they all seem to be be important - we’ll get regression without all of them working together. The good thing is, is that we know a lot of what we can do to help Dorthy, and we’re making progress every day.

The kind of sad thing is that she used to be on 5 different prescription medicines (asthma meds, paxil, etc.) that we have been able to wean her from through better diet (at significant cost also) and the supplements. The new end cost is lower than the prescription only regimen (at least before insurance), but the burden has gone from our insurance company to our pocket. We have made some progress - we are paying for most of our supplements on our medical “cafeteria plan” - meaning that we don’t pay federal taxes on them, but it would be nice if insurance covered more.