Well little Zachary has had a rough few weeks but the other day was a real woozie. I seriously thought his screaming and meltdowns couldn’t get any worse. It did. On our way home from school Friday I pulled out of the kiss n’ ride and he started crying about his seat belt not feeling right. Joshua who knows all to well when things “don’t feel right” tried fixing his belt. The screaming and crying got louder as he complained it was twisted. It wasn’t. But to a child on the spectrum it doesn’t matter if we don’t see it twisted. He feels it and can’t cope. Just before we got to our house Joshua adjusted it again. I park the car in the driveway and all hell breaks loose as he starts screaming for me to turn around and go back we have to start all over. He kicks the seat infront of his and gets hysterical when I tell him we can’t go back.
I will let you in on a secret. When Joshua was about the same age if I did not take the exact route home every day the same thing would occur and he would beg through his screaming and tears to please go back and start again because it wasn’t right. This was before I knew anything was wrong and felt as though I somehow did something to distress my own child that yes, I would actually turn around and start all over just so I wouldn’t have to deal with a two hour meltdown. Thankfully gas was cheaper then!
After about fifteen minutes of Zachary still in the car hitting me, screaming and refusing to let me take his seat belt off I finally got him into the house where he screamed, ripped up a picture he had done in school, and then ran out of the house screaming for me to take him back and start again. I brought him back in only to have a meltdown of swearing, throwing things, hitting me, scratching, jumping up and down and begging me to please take him back. Finally he was exusted after about an hour of this and started banging his head on the chair as he rocked back and forth with his blankie. My 6 year old daughter Arielle and 7 year old son Sebastian were happy he finally had stopped and came downstairs out of hiding.
It can be difficult some days - okay most days - but as my little Ryley continued to sleep through it all, and my other 4 sat around Zachary (not too close of course) to listen as I read Zaks library book “Franklin and the dark” I realized that I couldn’t have asked for 6 better children.
“Isn’t the sky the most beautiful shade of cerulean blue today?”
I thought he was color blind, because when I asked what color an object was, he would tell me the wrong one. In school, turned out not only did he know cerulean blue, as he told his teacher, he knew the entire box of Crayola 64 crayons! He wore an Indiana Jones fedora for three straight years. He wouldn’t wear anything but tan pants to “look like Indy” for at least two years. When he was younger, I had to flush the toilet for him, he couldn’t stand the sound. He loved water play and would spend hours playing at the sink. He hates to cut his hair. He can tell you more than you ever wanted to know about UFOs, Mythbusters and the latest video game to capture his interest, but he couldn’t tell the librarian his phone number. He cries easily, especially when frustrated, which also happens frequently. He knows what direction he is traveling at any given moment. He notices details that would escape most of us. Like the time they painted a gas station bench…the new color, the old color…doesn’t matter. He remembers. But he can’t recall his math facts. He doesn’t like doing activities that are not of his own choosing, and hates to perform on cue. He cannot eat gluten or dairy without a lengthy side trip to the bathroom. Consequently, he is on a special diet. He still moves snails out of harms way, just as he once did when he was two. He is now eleven.
She yowls like a cat when she is angry. Hours are spent in solitary play. She is very imaginative, creating elaborate worlds in her play, but other people don’t easily fit into her scenarios. She can be very rigid. She likes routine. She has a hard time with transitions, even when it is something she really wants to do. Her self-control, while improving, can be difficult. She eats almost anything, and more than you would think…she is a elfin little thing. She cannot read well yet, and doesn’t so much want to. She must be taught concepts repeatedly in order for them to take. Sometimes they do. She is a sensory-seeker, needing a lot of hugs, cuddles and attention. If she doesn’t get it, she will act out negatively. We call it “getting her pound of flesh” one way or another. Her whole life is a song. Even her voice is a song: a high-pitched melodious voice is used in conversation. Unless she is yelling. She speaks in half sentences. “Want cookie!” She is social, and loves having friends. She likes being in charge. She has trouble understanding changed decisions…she is certain they are lies. If I say something, I must follow through. She has a memory like an elephant, when it comes to things she cares about. She throws the worst tantrums I have ever seen. She is eight.
She loved to swing as a baby. At three, she threw horrible fits. I would have to hold her to keep her from hurting herself and me. In preschool, while other girls wanted to be a mom, she told her teacher she wanted to be a paleontologist. When her teacher expressed confusion she told her, " You know, a scientist that studies dinosaurs. Everyone knows that!" She taught herself to read at three and a half. She was reading chapter books by age five. She was a walking dictionary. She loves Biology, genetics, Latin, Logic. She is very literal, black and white and has a strong sense of justice. She doesn’t always pick up nuances. Interruption of conversations comes naturally to her, but not because she is rude, she just doesn’t get the rhythm of the talk. She understands sarcasm, but doesn’t appreciate it. She struggles with perfectionism, and a lot of anxiety. She taught herself to knit and play the piano. She tries hard to fit in with her peers, but there is always something just different about her. We say she is the “oldest thirty year old” we know. She is fifteen.
Some may say, “Well, sure, that is any kid!” But truly, my kids are like the amp in the movie Spinal Tap . Most amps went to ten. But the one in Spinal Tap went to eleven, “that’s one more, isn’t it? ” And that’s what my kids are…just a bit more.. a bit harder. This is what autism looks like in my house. I have no idea what causes it. I only know I watch my children struggle with it. We are fortunate, I suppose, since the picture I paint you is of high-functioning autism. They all have speech. They don’t spin. Or flap. But it still affects our lives. We walk on eggshells. It isn’t so much a cure I want…as an answer of what caused it, but if you ask my kids, they will tell you they want a cure. They say it is hard to live in their skin. I can see that’s true.
Every day, I see that’s true.
Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamomOrange County Special Needs Kids Examiner at Examiner.com, a featured blogger at OC Family and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.
I was standing in line at the grocery store, waiting to pay for the basket full of groceries I had amassed on my once a month grocery stock-up. I hate grocery shopping, especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk. My children were trying valiantly to hold it together; it was late in the afternoon and had been a long day. Grocery shopping is a break from the Routine that basically rules our lives, so often there is a difficulty in this endeavor. But today the children were on their best behavior. They were helping put groceries on the conveyor belt, while JBean kept up a steady stream of chatter. Today it wasn't them, it was me. My head was throbbing: I needed caffeine and I needed quiet.
My son decided to chat up the person behind us: "Do you like Mario Kart?" The person mumbled something politely, too quietly for me to hear. JBear took this as an invitation and continued, "I have Mario Kart for the DS. I also have a Wii. Do you have a Wii? I like playing boxing. I am good at boxing." I glanced back and the woman he was talking to seemed ok with her verbose companion, if a bit noncommittal. My son continued:
"Did you see the Indiana Jones movie? I did, it was good. They have the Lego game of Indiana Jones for the Wii coming out next month. I want that. Lego also makes a Star Wars game for the DS. They are making one for the Wii, but it's not out yet..."
Again, I glanced back and saw the woman shuffling her feet, looking around nervously. Time to reign him in. "JBear, shh! Come help me with the groceries." He didn't hear me. I had to call him three times. Then he started asking for gum at the checkout counter. And a yo yo. Pleeeeease? He has this trip-switch, when he has something on his mind, when he wants something, he just keeps asking. I don't even know if he realizes he does it. About that time, the lady got that look. Oh, you don't know the look? Simple.
When people notice something is a bit different with your kids, they react in one of two ways. The first group widens their eyes in amazement and says, "Boy, you sure have your hands full!" And yes, yes, I do. But it is what it is. I don't have an "S" embroidered underneath my t-shirt. I am just a mom, dealing with what I have been given. I don't want praise and I don't want pity. But often, they look at me as though I stepped from a space ship, a complete alien entity. If I throw the homeschool aspect in to the conversation, I see the door slam shut, the eyes cloud over, and I can almost hear the voice in their head as they thank the Lord that they don't have kids like mine, and thank goodness it isn't contagious!
The other group I encounter widens their eyes in surprise and says, "But they seem so normal." This is actually frustrating. This is the reaction I get when I try to explain Asperger's. I know that on the spectrum of special needs, Asperger's is considered pretty low. And my kids are actually mildly affected. Their behaviors are more annoying or frustrating than dangerous. My son has not eloped from a classroom since the First Grade. Of course, it helps that he has been homeschooled since the Second Grade, I suppose.
He does have an anger and frustration problem. In fact, when he is angry, he could give a salty dawg a run for his grog. He has recently decided that it is really cool to respond to any insult, real or imagined, "I know you are!" You can imagine how productive that is! He is in the habit of cornering people, because he is a social guy. He wants to interact, and find interesting things in common, but he doesn't pick up the cues when someone has had enough. I am constantly playing watch dog for him, translating so they will not miss out on what he has to offer, worried that people won't like him. Or worse maybe, they will judge me because of who he is.
I am not in the habit of explaining myself to random strangers, but I must be lacking. When I do try to explain to someone who inevitably asks, "What's Asperger's," I can sometimes hear, "Well, all kids do THAT." And yes, that's true. All kids do prattle on about minutiae. All kids have terrible table manners. All kids get mad and frustrated and yell. All kids don't know how to figure out when you have had enough of them. All kids interrupt. All kids wear the same clothes, every day, even if they are dirty, and get ticked off if told they can't wear that shirt again until it is washed. All kids harp over and over again about allowance, video games they want, going to the library...whatever it is that is on their mind at that very moment. All kids throw fits when they don't get their way. All kids need help getting dressed, even when they can actually accomplish this task themselves. All kids have unreasonable fears and cannot take out the garbage at night or get up to go to the bathroom in a darkened room. But the point here, is mine do it more. That's what Asperger's and High-Functioning Autism looks like. I didn't want bragging rights. I am not trying to one-up anyone else. I am simply trying to live with kids who have to live with "mild-mannered Autism." Anyone who uses this term clearly has never lived with nor experienced autism.
I don't play the Label Game. I don't have Munchausen Syndrome by Proxy. I don't find my identity in being Supermom or having kids with "special needs." We sought a diagnosis for my son simply because he wasn't functioning in school very well, and we started seeing some signs at home. I knew something was wrong. I wrote a letter to the school, asking for an evaluation. The district did their tests, gave us their result, and then we obtained our own private evaluation. We ended up with a diagnosis and an IEP. With some interventions and by educating myself, we found accommodations that worked for him. I learned how to talk to him, how to calm him down, how to provide a sensory diet and just learn to live with the quirkiness that can be autism. At some point, I started rolling with the flow, and it became, if not easy, something familiar. And, it was okay. I thought that was the end. Autism had touched us, but it was a tentative touch.
Cut to 2006. Those who read will know this already, but we had a house fire, and lost everything. The house was standing, but they gutted it, and rebuilt everything but the bones. Every item except for the clothes on our backs was destroyed. Of course, we all took it hard, but my then-six year old was particularly devastated. It was and is, the only home she'd ever known. On a good day, she keeps most of her emotions to herself. This caused her to retreat inside herself. She would build little worlds with her My Little Ponies, and Littlest Pet Shop, barricade herself inside the toy houses. Walls of toys would sit between her and the rest of us; she was shutting us out. We sought counseling, and of course, the question we all had was, is it the trauma or is she also on the Spectrum as well? After what we thought was a failed bout of counseling, it proved to be the catalyst and we decided to have our little JBean evaluated for autism.
I went back and forth, second-guessing myself. Autism is a spectrum, and there is a saying, "If you've seen one kid with Asperger's, you've seen one kid with Asperger's. My son and daughter are as different as night and day. I would look at her and think, "No way she is on the Spectrum...she isn't like JBear." I waffled and tested her myself, and I wanted to be wrong. She was diagnosed with autistic disorder two years ago.
So when the woman behind me gave me that look, I just smiled at her and said, "Kids!" About that time, the cashier finished ringing up my groceries. There is a time for education, and there is a time for cutting your losses and just getting the heck out of Dodge. So I'm sorry to the autism advocates,just know some days I fight the good fight. But today I pulled myself up by my bootstraps. This wasn't the day to try and educate the public. This was a day to take my children home with me, cuddle them close and read books while munching cookies. This was a day to just be. I swallowed the lump in my throat that came from unshed tears. Yes, sometimes I grieve for what they don't have. And maybe that's not what Supermom would do. As I rolled out to the car, I realized the lump in my throat wasn't just grief. It was something else, as well. It was a fierce, protective love, and a knowing that I am exactly where I am supposed to be. And I don't think that Supermom could have it any better.
T, who just does what she can do some days
Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamomLA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.
It's been a bit since we have posted, but we are still around.
If you have experience with autism, consider writing here. All you need is your story.
Email sendchocolatenow AT gmail DOT comTogether, we can get through life with autism.
Tina
Sorry, I am crossposting this on all of my sites. I simply feel the issue is too important to ignore. Thanks!
You might remember earlier this year about the teacher from Port St. Lucie, FL who had her class vote on whether Alex Barton, a child with autism, could remain in her Kindergarten class. He was voted out, traumatized and refused to return to school. There was a great uproar and teacher Wendy Portillo was suspended without pay for a year with her tenure revoked.
The school board quietly reversed its decision this week..please read the rest here, and trust me, you need to read it.
Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamomLA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. Autism Sucks is her brainchild.
By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...
I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.
I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.
I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.
My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.
The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.
This is not even all of it. See, this Autism thing, way more than any parent bargains for..
You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.
I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..
It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.
I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.
As other parents recount the day that their child was diagnosed, or that moment in time where they understood something was wrong with their child, I am amazed at their power to recall the details of the time.
I don't remember those details. Every day of my life since my youngest daughter's birth has been a blur.
As an infant, she did not have a sleep schedule. She would be awake all night, or for hours at a time and often, she was inconsolable. We tried different formulas after breastfeeding. Nothing changed. We even had our chiropractor adjust her and there was a short lived reprieve. Maybe a day or two of sleep for the household? It is hard to remember anything other than the general.
I don't remember loving this baby like I did my first. Yes, every child is different and the feelings associated are different also. But, this was....... different. The sleepless nights turned quickly to resentment and frustration and depression.
Soon, we were lost in our own woes and stumped about what the baby's problem was. So, we just dealt with it.
By the time she was three, my husband and I had separated. I understand this is common with parents whose children have developmental disability, but I had no idea at the time that it was a contributor to our failed marriage.
When it was time for my daughter to enter pre-kindergarten, my older daughter had been doing great in school for several years, ahead of her peers in almost every subject. Everyone loved her and she was such a sweet girl.
Her baby sister was almost the polar opposite. She barely spoke, had rage-full fits, and obsessive - like behaviors.
I tried to explain this to the teacher at the assessments, but I didn't have the right words, because I didn't know the terms or even what they meant yet. I, along with her dad and gramma, just thought she was a little slower to come out of her shell since her big sister could (and did) help her with everything from talking to getting dressed. We simply believed it was a matter of not needing to express herself because she had someone to do it for her.
At the first 9 weeks teacher meetings, we got a note requesting a special meeting. It was at this meeting that her teacher told us of her behaviors. Many of which we were familiar with, but it was still a shock to hear them explained to us from a classroom perspective. I wanted to cry. Maybe I did. Like I said before, the details are all fuzzy and run together.
This teacher was kind, and I'm so grateful that she was, because without her kindness, we may have brushed her off as being a rude and pushy know it all. But, she really loved my daughter and wanted to help. She was instrumental in getting the first IEP set up and helping us to find further help for this child.
Now, 2 years later, that child is still not comfortable in school. She still has lack of control over her own body and emotions. She is still rageful. It took nearly 2 years before anyone officially called her Autistic and even now, there is so much more to learn about how this disorder works.
What will her life be like? Will she grow up to be a psychotic maniac, or can she possibly adjust to her environment at some point? Some adults with autism never do, and some can't. They become statistics of the system, jailed and imprisoned for their lack of control and ability to conform.
Did you know that? Did you KNOW that?
I'm afraid for my daughter, and I'm afraid of her. The rates are growing in relation to others like my child. I only wish I were alone.
Jenn Brockman is a single mom of 2 girls, one on the autism spectrum and one with ADHD. She writes and hosts a radio program advocating for all special needs kids at Special Needs Kids Talk Radio while running her own mineral makeup business.
Email me if you want to write for this blog. Just leave your email so I can add you as an author. ALL who are intimately familiar with autism are welcome! SPAM COMMENTS WILL BE PROMPTLY DELETED... don't bother to post.
Children don't suck, but autism often does.
Parenting a child with autism really sucks, a lot of the time.
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