Nothing wrong with different, as long as it doesn't hurt

It's sad how so many parents are completely ignorant about autism--that it's not just quirky traits and what's wrong with my kid being different??? Being different is fine. GREAT! But feeling pain and discomfort is not great. And those "quirky" things your kid does is very likely your child's body trying to combat discomfort or even serious pain. Like the message board post I saw by a mother who, at the time of the post, was not allowing her child to wear a pressure vest, recommended by the OT, because her son walks on his toes. She doesn't see anything wrong with him walking on his toes because he's only in preschool..... !!! WELL, often times preschoolers, and especially autistic ones, are not mature enough with communication to tell us when they are really hurting or uncomfortable--and maybe that's why he walks on his toes! A pressure vest is supposed to feel GOOD to the wearer. It is not a punishment. If it the child doesn't like it, the OT knows it's not the needed therapy and will not continue use of it. A vest is not like a straight jacket. I have seen first hand many kids at my daughter's school wearing their vests. The vest brings a smile to the boy who is otherwise grimacing and shrieking and flailing. It also made another little boy talk and play with friends after months of speech regression. Vests are a good thing if they work! If they don't work, don't wear them. Goooooodddd grief! Seriously. It's outrageous!

Also outrageous is the little boy at our mainstream preschool who has many autistic characteristics but his mom froze in horror when--after she was telling me how he likes to pretend to be other classmates, assumes their names at home, and can perfectly mimic their voices and gestures--I asked if he also repeats things she says, or wants her to repeat what he says. Along with the horrified look she exclaimed, "Oh no! Nothing like THAT! I just think it's because he's going to be an ACTOR." .......

Oh....really....? Okay. Because my kid does all that stuff too, but I don't necessarily think it's because she's going to be an actor (though she might be, who knows). But for now, it's because she's autistic.

8, 5, 4, 1... blast off

Check out SRMM's Top Ten List Dos and Don'ts list. It effectively sums up why I don't want to talk to people about autism anymore. Life as a single mom with a child on the spectrum is tiring enough without having to constantly defend the diagnosis to every living soul.

Autism FAQs

[This is an email I sent out recently to friends and family. I've replaced my daughter's name with one of her favorite nicknames: "Zula")

For the occasion of Autism Awareness Month, here is more than you probably ever wanted to know about autism and Zula.

Some FAQs: 

What is autism?

* Autism is an umbrella term for a neurological difference that causes a "spectrum" of symptoms. So it is called Autism Spectrum Disorder. It has to do with the wiring of the brain. The world looks, sounds, smells, feels, and is generally perceived differently by people with autism, hence their "different" way of relating to their environment. This is evidenced by how an autistic brain under MRI lights up in different areas than a typical brain does in response to stimuli. And each case of autism presents in a unique way because of the intricacies of the brain.

What causes autism?

* Nobody knows. Some swear by vaccines but there is also great evidence of genetics since there are so many cases now of siblings having it. There is some beginning research into the idea of an autoimmune response, that it could be a reaction of the central nervous system, perhaps to allergen. Whatever the reason, in our case I know that Zula was this way since birth, and even the womb. The meltdown she had in the hospital on the second day of her life is the exact same kind of meltdowns she has to this day. And she was in constant movement in the womb, the same way she was in constant movement as a newborn (we had to keep her arms and legs tightly swaddled until about 4 months old because they wouldn't stop jerking and moving) and now as a little mobile person almost 4 years old, she is still in perpetual motion, always trying to find new and interesting and dangerous ways to get upside down and be in constant contact with everything in the room at once. For instance, today we visited someone's house and she spent the whole time doing snow angels on the carpet, rolling around, bending over looking at us upside down from between her own legs, etc. Rarely can sit still for one second for any reason unless she is sitting with a stack of books. With the books she will go through each one, page by page, "reading" to herself in her own jargon mixed language.

Why have more kids been diagnosed with autism now than in the past?

* Because of research and knowledge advancements. A lot of these kids were categorized as "mentally retarded," when actually many autistics are advanced in cognitive skills. Also, girls are now being diagnosed more often than before. However, their symptoms present differently than boys. At her 12 month check up, due to my concerns (constant screaming, rigid arched back, never wanted to be held close, couldn't take her anywhere, etc) Zula's doctor considered autism and referred us to the senior M.D. onsite, who dismissed it. But the word came up again at her 2 year check at a different doctor when she still wasn't talking, and again at her 3 year check for her delay in speech. I began pursuing diagnosis more aggressively at that point, and she was diagnosed at age 3 1/2.

What is Zula's diagnosis?

* Zula was diagnosed by a team of 5 developmental neuro-pediatric specialists who observed her for 3 hours. The consensus among all was high-functioning autism, since she can speak to a degree, but the diagnosis was not Asperger's, since she has significant speech and language delays/disorder and Asperger's is a higher functioning part of the spectrum without speech problems.

So what does Zula "do" that's autistic? (brace yourself; this is the longest paragraph yet)

* Communication is a big problem. I joke that she's like an ESL learner. She has difficulty understanding what I'm saying and struggles with spontaneous communication. A back and forth conversation with her is rare, and short. It's different than a sullen child who just ignores you or doesn't want to talk. She has delays in receptive and expressive language, as well as zero tolerance for frustration, so conversations with her are like a ticking time bomb because the slightest misunderstanding will end up in a meltdown. She doesn't understand any sort of figure of speech, homophones (words that sound the same but spelled different, like "see/sea"), or jokes. This week's problem word has been "go ahead." She yells back, "NO! Go hair!" She still speaks jargon about 50% of the time. And meltdownsare another big problem, probably the worst problem because they interfere with us being able to have experiences others take for granted. Tantrums are easy and over quickly. Meltdowns last about 30 minutes and she goes totally berzerk: sticks her fingers down her throat, gags, gasps, hyperventilates, thrashes around, screeches like a wild animal, etc. In that state she cannot be reasoned with or soothed. It has to just run the course. I've been joking that she turns into the Incredible Hulk. I walk on egg shells and live in fear of the meltdowns. Besides communication problems, another meltdown trigger is the rituals. We have a zillion crazy rituals that must be maintained all day long. For example: dvds must go in the machine "upside down;" she has to have her vitamin while sitting in the same spot on the couch every day; her hair can only be brushed while sitting in the same place on the arm of the couch every day; she has to touch a combination of things in the car before she will settle into her seat; we have to enter and exit familiar buildings the exact same way every time without stopping for chit chat; she has to brush her teeth twice each time, while I sing Row, Row, Row Your Boat; she's been listening to the same bedtime CD every night since birth; you get the idea. Change is tragic for us. Another ritual is the echolalia, where she repeats things she hears in the same tone as she heard it (which is funny when I hear the intonations of a teacher or relative that way), but more often her echolalia manifests as an obsession with having ME repeat everything SHE says. I realized recently this evolved from her lack of eye contact. She has never made much eye contact so I think if I repeat what she says then she knows I am SEEING her. But it is really annoying. She will repeat a word or phrase, getting louder and more frantic, until I say it back. And, the latest and worst ritual we have going on right now is this horrible, terrible nickname fixation. It's not like a kid playing a fun game of pretend. She actually is terrified by the sound of her own name and gets really upset. She has night terrors about it, screaming, "NO Zula! Not Zula! I'm not Zula!" She wants to be called all sorts of different names, either characters from tv/movies, names of tv shows/movies, and sometimes names of kids from school. The worst names to date have been "Lady in Pink Ian Kitty" and one day she was just "Eric," for a whole day. And I asked her what the real Eric might think about that and so then she became "Real Eric"... So I try not to say the nicknames, in an effort to discourage the whole thing, but also try not to use her name at all because she'll go right into meltdown mode. Even more complicated is that apparently the pronoun "you" also means "Zula" so if I refer to her as "you," she yells "NO ZULA!" And her poor teachers found out the hard way when they tried to humor her and write her nickname on her papers. Apparently all of her nicknames are spelled "Zula." And then there's the sensory stuff like food textures (very limited diet), shadows/light, easily overheated (can't wear long sleeves), crowded places, people touching her, wanting to inappropriately touch other people (really embarrassing), etc. There's a lot more but I won't keep you here for days.

Does Zula do any autistic "tricks?"

* No tricks, at least not yet. She is advanced on cognitive testing. She is very observant of details, would make an excellent eye witness. If you want to know what color anything was that flew by, she would know. She would also know how many there were. She loves music and can match classical pieces she hears on the radio to where she last heard it on a dvd. She will stop, listen, then go to her movies and pick one out, put it in and sure enough, there's the song. When she was 2 she memorized a baby picture book of about 20 cats with weird names (like Phisbee, Bella, Wally, etc) in less than a week. She hasn't been doing anymore stuff like that though. She knows the whole alphabet, shapes, colors, etc but seems to have greater natural aptitude with math concepts. She loves counting, and matching, and categorizing, and lining things up. She is really good at jig saw puzzles. She does not like dolls but is obsessed with her stuffed animals and can't have enough of them, yet none of them have names. 

What therapies and treatments is she getting?

* Zula goes to two preschools every day: one private and one a public special ed preschool. At special ed she gets speech and occupational therapy. The best treatment for autism is education: the more classroom time the better, and at the earliest age possible. I was already on the right track long before the diagnosis when I saw how much she loved going to school. She does act up at school, but about 75% of her problems are here at home with me, or out in public with me. Yay for me!

What is the outlook for Zula?

* Because of her early diagnosis and early intervention, I think it's possible Zula will be able to go to regular kindergarten at age 5 (We have full day kindergarten here and I can't wait!). She'll likely always have extra special challenges, but we'll take them on as they come. 

Happy Autism Awareness Month

What's more frustrating, exasperating and tiring than a willful, headstrong, intense, oppositional, contrary, defiant, easily frustrated 3 1/2 year old girl who wants Mommy's attention but also wants to be completely independent? Well, a generous touch of autism really brings the party. It's hard to separate her personality from the autism sometimes but from what I can tell, and knowing what I know about her genetics, this would have been a toughie anyway--without the autism.

She tends to do things to the extreme, which I think is part HER and part autism. For instance, her chronic, persistent, oppositional, contrary, defiance. When put on a typically developing child at this age, I doubt many of them would have the endurance to maintain such a nasty attitude during nearly every waking moment. I cannot say anything without a major issue over what I have said. And the issue usually relates to her communication disorders.

Examples:
I said: "Go ahead."
She said: "NO!!!!! No go head! Go HAIR!!!!!!!"

(That's the language disorder talking. She has a very difficult time understanding what I say. Sometimes she just hears the word wrong, like lobster/monster, or sometimes it's because the word or phrase is a homophone or a figure of speech. Communication with her has to be extremely concrete.)

I said: "It's going to snow tomorrow."
She said: "NO!!!! No 'marrow! NEXT TIME!!!!"

And then if I forget and call her by her real name, that's when we really have trouble. She FLIPS out if she hears her real name. She assumes names for herself throughout the day, usually based on something she has seen or played with or a person at school. It's really embarrassing when she insists to be called "Eric" or "Domonick," after boys at school. And even more embarrassing when she goes BERZERK on classmates and the parents of classmates when they greet her and use her name. The parents look at me like it's all my fault, and the poor little kids don't understand and are afraid of this shrieking, wild monster who they thought was their friend. She takes the name thing so seriously that she has night terrors--wakes up screaming about not wanting to be called by her name, and screaming out other names she wants to be called. I try to avoid using her name or aliases at all, so I don't encourage the behavior, yet I get in trouble when I speak to her as "you" in conversation. A perfectly pleasant (and rare) conversational exchange can be ruined in a split second once she decides that "you" means her name. Then it's just a torrent of "No!"s and screaming, and then I just walk away. That's all I can do. It's sad and awful that I cringe every time I speak to her, wondering if what I just said will set her off. I dread every day, honestly. But I just keep praying for patience and wisdom in dealing with her.

Strangely, a friend who also has a special needs child told me, "it's all about how you parent her." Though she herself should know each kid on the spectrum is different and I was surprised to hear such a thing from her. That is a parents' worst fear, to be judged on their parenting! And parents of autistic kids are especially sensitive to this. Some special needs children just can't be "parented" in the way she means. In our situation, however, what I CAN do is work very hard to make sure we find all the services and therapies and experiences she needs to progress and succeed. Parents of typically developing children need to focus on "parenting" but I'd say that parents of many types special needs children should focus on "advocating."

This being Autism Awareness month, I think of parents of children who are lower functioning and am grateful we have the skills that we do.