Showing posts with label autism spectrum. Show all posts
Showing posts with label autism spectrum. Show all posts

Friday, May 6, 2011

It Clicked

It clicked today. Not that it hasn't before. There have been huge steps, then a step back, then forward, then two steps back. That's autism for you.

But today, the pieces fell into place. She's been struggling to learn to read for a while now. Lately, she's been working even harder on her speech homework and reading simple books. Fat cat. Hot dog. She's read Dick and Jane, and recently discovered that Poppy, our Newfoundland, is the perfect reading buddy. She's become more interested in books, and loves to be read to (though she has loved that for a while).

Today, we sat, waiting for my band class to start. I brought along the book I'd been reading aloud. In it, a group of teenage girls learned to read for the first time. The main character, a smaller girl who felt young and unimportant compared to her peers (hm, sound familiar?) was teaching her older sister to read. On a whim, I pointed to a word.

"I bet you know this word." She recognized it as one of her sight words. "She." She knew the next word as well. "Would." Carefully, she sounded out the rest of the words in the sentence. I helped her sound out the harder words, ecstatic. Later that afternoon, she read an entire page out of the book, with help.

We ended up going to the bookstore that evening. I don't think I'll ever forget the look on her face as she looked at the chapter books and realized that she could read the words inside. Suddenly, it wasn't something that her peers could do that she couldn't. It wasn't something to be afraid of, or pretend she didn't want to do. She could read. She skipped back to the car with her book, and once home, ran around the house singing "I can read!" She wanted to read everything: labels on packages, words from the book, even a birthday card that was on my nightstand. She read me an entire book, Leo the Late Bloomer, about a tiger who couldn't read or write when everyone else could. It was all I could do not to cry. She said later that there were words everywhere and now she could read them. She jumped up and down, still singing, and went to read to Poppy.

When she came back in, she chattered rapidly about anything and everything: the characters in the book, how she felt left out with her friends, how she had friends who moved and others who weren't friends anymore, how she wanted to be like me (yeah, I know. No pressure) and how she was so excited she could read. I wished I could hug her and tell her it would be okay, that it wouldn't be hard. All I could do was hug her and tell her I knew exactly how she felt, how even now I didn't feel like my peers (Prom? Meh. Dating? Triple meh.) It surprised me, definitely. She's very quiet and doesn't usually talk about her feelings, let alone deep, dark fears and insecurities. I wish I had the words to make it better. All I can do is be there for her, ready with hugs and a listening ear (since it would probably be frowned upon to try to knock some sense into nine and ten year old girls). Even with everything she told me, I feel like she has a newfound confidence. As we told her, a whole world has been opened up to her. Later, finishing the book, we ran across yet another thing she could relate to.

"I keep thinking about a tale my nurse used to read me about a bird whose wings are pinned to the ground. Have you heard it? In the end, when he finally frees himself, he flies so high he becomes a star. My nurse said the story was about how we all have something that keeps us down."

Today it clicked. And I know it's just the beginning and it doesn't mean everything is perfect, but I'm finally seeing my baby sister fly and I think it's the best feeling in the world.

JBug is the oldest daughter of Tina, and big sister to two (mostly wonderful) siblings.

Photo via Flickr, quote via Princess Academy by Shannon Hale

Monday, March 22, 2010

Mommy meltdown

Today I cried. I had finally had it. Having children on the spectrum really sucks, and I have gone on for so long with just “dealing with it” every day that it finally happened. Mummy meltdown. Not to have a poor pity me session but seriously it was bound to happen. How long did I think I could actually go on here with 6 children, no help, and two on the spectrum?

Granted there are other children who have far worse disabilities, but here in this household it is bad enough. The worse thing about having a child on the spectrum is that the do not look like they have a disability. They look so typical. But back to the mummy meltdown. It was probably brewing over March break as each child came down with a nasty stomach bug, one after the other. So when it was back to school today I was glad to be back into the regular routine.

However, my Joshua had a rough time getting back into the school thing and didn’t want to go. I finally managed to get him into the truck and over to the school, but once there he put up a terrible fight and wouldn’t get out. I had to call out the VP who fortunately for me is a great guy and totally gets Joshua. So after about 15 minutes of Joshua screaming, kicking, hitting and trying to run off, the VP managed to get him under control and into the school and so I left.

Then I cried. Hard. The flow of tears felt like it would never end. For half an hour I allowed myself to scream “why me?” I allowed myself to yell at all those ignorant people who claim Autism can be cured by diet, or other things that only give us parents false hope. I allowed myself to feel the guilt and shame that comes along when my son chases the garbage man in his truck down the street screaming for him to give back his stuff, or when he has violent outbursts, or when he has a meltdown in the grocery store. I allowed myself to feel guilty about not being able to spend more quality time with my 4 typical children because Zak and Josh require me 24 / 7. I allowed myself to be me, not the supermom people think that I am.

Then I stopped. Wiped away the tears. I am a wife, a bitch and the biggest advocate for all of my children. I am a momof6 who only has time to feel sorry for herself for about half an hour, once a month or so. Times up.

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Tuesday, November 24, 2009

What color is autism?

“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 typeamom Orange 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.

Saturday, September 26, 2009

Is the CDC quietly revising autism numbers behind our back?

I don't normally do this, but I am linking to the article on new autism rates I wrote at Examiner.com simply because I am still reeling at what I found out. I am having a hard time believing it but the CDC appears to be trying to bury new numbers as to the rates of autism in the US. The rate is now 1 in 100, or 1% of all kids in the United States will be diagnosed with an Autism Spectrum Disorder. WHY isn't this all over the news? Your guess is as good as mine. Read the article. What do you think?

T, who is NOT a Conspiracy Theorist, but is searching for an explanation

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 typeamom LA 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.
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Monday, June 8, 2009

Lookie, we have an award

Autism Insights awarded us with this:

And we all share in this award, all of those who write here at Autism Sucks. You all are wonderful, and I am so glad you are here and a part of this.

About the award:

This award recognizes and gives value to:

  1. 1.- Commitment to Quality Education.
  2. 2.-Betting on the inclusion of Tics [children with tics] in the classroom.
  3. 3.-The effort of parents, professionals and educational centers in incorporating the Tics into the educational process.
  4. 4.-The struggle to defend, through the Teaching Values like: Solidarity, Love, Affection, Respect, Effort, Aid, Support, Sharing and Commitment, the future of our children and students.
  5. 5.-Recognize and value the effort of the families, professionals and educational centers for integrating effective conditions in the schools and in society for the children and special students, gaining them tons of love and allowing them all the resources at our disposal.

You can distribute this prize freely to those blogs that you consider to be working in these lines.

The Norms of distribution are:

  • 1.-Publish the objectives of the prize and link to Recursos Educativos (Educational Resources).
  • 2.-Publish a list of deserving blogs to pass on the prize.
  • 3.-Communicate to each blog rewarded that they have won the prize.

I'm giving the award to:

califmom: she writes about Tourette Syndrome, cancer and homeschooling
Sweet Schoolin': writes about homeschooling special needs kids
Whitterer on Autism: autism blogger and so much more
The Wonderwheel: two blogs on same domain, one about communication therapy, the other about autism.
5 Minutes for Special Needs: group blog about special needs
Thanks for your contributions to the special needs niche. You guys count! Tina
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Saturday, April 18, 2009

The Division in the Autism "Community" SUCKS!

It's Autism Awareness Month - can't we all just TRY to get along?
We - mothers (and fathers) of kids with Autism are a community, divided.
I hate it! Hate is a strong word. But, it really sums up how I feel about this. It bothers me. We all have something in common, a child with autism. That should unite us, yet instead we are so very divided. Attacking each other for our beliefs on whether autism was a result of an environmental trigger or vaccines or genetic. Attacking each other for our avenues for our choices in therapies or interventions.
Why the hostility?
I have many many friends who are also moms of autistic kids, like myself. I'm part of several parent groups online and off and I wouldn't have it any other way. Some of my friends are like me and others very different. I have friends who do biomed and friends who don't. Friends who believe their child was autistic from birth & genetics and others who feel it was environmental or vaccines. I have friends with kids on the diet (like my son) and friends who think the diet is a waste of money. I have friends who do chelation and/or HBOT and friends who do not.
Those who know me, or read my blog know that I practice the GFCF diet for my child. I've also shared info on some supplements that he uses. I don't get into nitty gritty on dosages or meds we may or may not use as I don't think that's the general public's business. This past week I reviewed two books that deal with biomed - Jenny McCarthy's new book and LeeAnn Whiffen's book. Immediately I witnessed fallout among my circle of "friends" because I go on record as doing some biomed for my child. How dare I? I've taken a side. I'm Biomed. I'm the evil. I SUCK! Keywords: MY CHILD. Tonight, I am sick of walking on eggshells and trying to not offend anyone. This is my child we are talking about. What you do with yours is your business and I'm not chastising you for making different choices for your child. Keywords: YOUR CHILD.
I've made a point to be Switzerland as much as possible and not cast judgement or throw stones at others for their choices. Yet, I continue to be on the receiving end of stones and I'm feeling pretty beat up. When the community is so busy fighting and at odds with each other over causes and treatment, where is it getting?
Nowhere, and fast.
----------------------------- Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?

For the Last Time, It's NOT My Parenting (and if you ask again, I'm Going To Throw You Off A Bridge)

It started over tea. She wanted to have a tea party. But she didn't want to use water. That's for babies! She wanted me to make tea. Which I couldn't do, I was helping her older sister with her Algebra. Part of homeschooling is taking turns. Littles, at 7, isn't always good with that. Well, let's face it, she is really bad at it. When it is her turn, she expects everyone else to wait. But make her wait? And it is Meltdown-City. She will extract her pound of flesh, one way or another. Of course, it passed. It always does. But the aftermath for me is the hardest part. The way I am left feeling: drained, defeated, ready to cry.

I suppose I shouldn't be too upset. She hasn't had a tantrum all week long. Her dad was gone for ten days and in that time, she has been fine. We have had a few missteps here and there, but no full blown I HATE YOU I HATE YOU I HATE YOU episodes. Maybe that means she is getting older. Maybe that means the developmental delay that is Autism Spectrum Disorder is righting itself. Maybe that means the naked chanting that I did by melting green crayon and throwing sheets to the wind has paid off. (I am just kidding about that last part.) Maybe it's just that the tide is high and the moon is low. Hell, I don't know.

And that's part of the problem. I don't know. If you ask me a question about grammar or algebra or llama breeding, I can probably tell you. Or, barring that, I can find out. But as far as the exact reason my daughter is tantrumming, or the tried and true foolproof method of stopping said fit, that seems to be missing on Google. Certainly there are suggestions, but what if they don't work? What then? With children, you don't add A to B and necessarily get C.

If I was a carpenter, I would be sure that I have the latest tools, the best ones to get the job done. A hammer will always work as a hammer. A level, well, that's designed for leveling. With just a few simple tools, a carpenter can build many things. With a few more, he becomes a master craftsman. It can take a lifetime to wield the tools correctly. But even if his skill is only passable, he will be able to create a chair.

As a parent, I work hard to develop my parenting skills. I think if had neurotypical children I would be a pretty good parent. I add tools to my toolbox often. They say if you only tool you have is a hammer, then everything looks like a nail. I am guilty of this at times. But a soft word or patience? Those don't always work. In truth, there are times that I run out of tools in my toolbox. I keep thinking if I just gain more gadgets, if I just learn more schematics, I will, eventually, build the Taj Mahal. But with autism? All bets are off. Sometimes, a level ends up as a fulcrum. Or a hammer ends up as a paper weight. Sometimes, I end up dancing around like a monkey because I have to think outside the box. Down is up, and and Left is Right and OhMyGod is it 5 o' clock yet??

I am not a drinker. I have a bit of Irish Cream or Kahlua in my hot cocoa or coffee about twice a month. A glass of wine about as often. And though I talk about it, I just don't do it. There are times I wish I did drink more. Then I wouldn't care so damn much when I reach the end of the toolbox and find nothing but sandpaper and a ball ping hammer. But I do care, and it kills me and I always wonder, why can't I be a better parent? Why can't I help her calm down before she gets to that place where she is completely unreasonable? Why must I be left feeling like a hollow shell with every nerve exposed? What am I doing wrong?

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 typeamom and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.
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Friday, April 3, 2009

Perspectives of a Guilty Parent

Originally posted at Mamabusypants on April 1. Life on the Spectrum recently wrote: "Someone said that they were tired of some parents with children who have autism, painting autism as if it were some sort of cool adventure. Autism is hard, depressing and sometimes unbearable." That resonates. Mr. Busypants has mild autism, which translates into autism is only mildly a pain in my ass. Sometimes I feel guilty about his mildness. I'm stuck in the middle: my kid's not quite normal, but he's also not completely, hopelessly, overly frustratingly autistic. So while I deal with the "autistic moments," I do not deal with them at the great frequency that many others do. Initially, the diagnosis and subsequent transitions from babyhood to toddlerland to preschoolville were hard, depressing, and sometimes unbearable. But now, while Mr. Busypants is in Kindergarten at least, the challenges are not much larger than the average parents' (different, but not more overwhelming). That may change, but I feel privileged to just love his mind and the unique perspective he brings to life. At least for now, I get to see it as a cool adventure. To be honest, I fear my neuro-typical (NT) daughter, Miss Chattyshoes, drama queen that she already is, will be way harder to raise. She already has an opinion about everything. When she really, really wants something, she repeats herself, each time at a higher decibel, until only dogs in the neighborhood and the dolphins at the Brookfield Zoo are able to hear her. I'm constantly being ordered to "sit down mama," as she plants her chubby cheeks (yes, the other ones) onto the couch and pats the spot right next to her. It's often frustrating because there's an endless list of things on my To Do list (like laundry, major clean up, grading, dishes, more major clean up, Facebook), but recently I decided to fall in line with the little drill sergeant. I mean, she'll only be little once. So now I'm getting caught up on all kinds of reading. It's distracting to do my Bible study with Elmo in the background, but somehow I manage. As for Mr. Busypants, well, so far he is wildly navigating the line between having autism and being a regular kid. He has a lot going for him in that he wants to partcipate with others, but he also has obstacles less known to those who are neuro-typical. He's coping with the sensory bombardment that's magnified because he has autism, the obsessive/compulsive need for structure and repetition as he processes the world around him, and the emerging knowledge that he is indeed different. Jeannie Anderson is a stay-at-home mom with two children, Mr. Busypants, 6, and Miss Chattyshoes, almost 2. She is a part time college-level writing instructor at three Chicago-area colleges and writes about the Adventures of Mr. Busypants at Mamabusypants.
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Tuesday, March 10, 2009

Coming Home

Today was the third meeting with our architect as we continue the initial stages of building our dream home. Interestingly, at this meeting there was cause to disclose my eldest daughter's special needs as we discussed the functionality of our house plans for our kids. At the end of our meeting, the architect shared with us that he too has a special child. It is always amazing to see the shift in relational dynamic that occurs when two people, almost strangers, share this one bit of information. Suddenly, doors open into each others' lives and mutual understanding and empathy flow forth. As a parent of a child with special needs I notice an unspoken camaraderie, or a "Club" so to speak, with other parents in similar situations. No matter what the diagnosis or functioning level of your respective children, there is that immediate bond when you hear another parent's story or see them struggling at a restaurant or store with a child that reminds you of your own. An instant understanding. A deep connection. It crosses oceans, creates bridges, connects continents, transcends dialect, race and creed. It is unspoken pain, unspoken love, unspoken relatedness. I wonder sometimes if we parents, as a result of not quite "fitting into the norm," are trying to find and/or create some kind of community within the larger society. A community where we don't have to explain ourselves, where our child isn't stared at or worse - NOT stared at (you know, when people too politely avert their eyes). As the mother of both a "non-typical" child and three "typical" children, I always have one foot in one planet and one in the other. Dual citizenship. I straddle the galaxy and it never ceases to amaze me how both close and far away these worlds are from each other. The ability to live 2 parallel lives poses challenges as well as offers great reward and a sense of balance to a once lopsided existence. My oldest, afflicted with serious seizures at 4 months of age and diagnosed with Autism and "Mental Retardation" at age 2, was my only child for 10 years. For a decade I was a Mom, but didn't feel like I could relate one bit to the mothers around me. My life was filled with Physical, Occupational, Speech Therapies, private and county intervention, music therapy, neurologists, endocrinologists, cranial sacral therapy, secretin infusions, DAN protocols, visits to specialists, travel to conferences, and thousands of hours logged onto the Internet researching and on my knees in prayer. I was not on Planet Typical... the planet of regular Mommies doing regular parenting things, but rather orbiting in its atmosphere, desperate yet fearful to land. It's interesting because I have met some of the most wonderful people in the line at Baja Fresh, in an ice cream parlor, or by visiting each other's blogs from hundreds of miles away. We have crossed paths and bonded through the gravitational pull that draws special needs parents toward each other. I think when we meet someone who travels our path, who prays our prayers, who picked up the pieces of our same shattered dreams, who rebuilt our same new dreams, who revelled in new joys, who feel our pride and rejoicing, who cry our tears, who live on our planet, we breathe a sigh of relief. The relief of not needing to explain ourselves or our child's different behavior, appearance, or needs. The relief of speaking our own language. The relief of not having to give explanations. The relief of being released from orbit, even if just for a little while, and feeling the warm soil of our Homeland. Alicia D. has essays to be featured in the upcoming issues of Today's Caregiver and Autism Spectrum Quarterly. She can be found blogging about raising her four girls, one with Autism, at Welcome To My Planet.
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Thursday, February 26, 2009

Autism and Homeschooling: Why?

...this is a repost from my personal blog...but it seemed relevant here.

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. Tina Cruz is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome. 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 editor of the Special Needs channel at Typeamom. Her personal blog can be found at Send Chocolate.

Monday, February 9, 2009

The Dirty Secret Schools Don't Want You To Know

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. is a writer, wife and mother of three children, two who have high-functioning autism, one who has undiagnosed Aspergers. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents in support as a privilege.

She is the Special Needs Editor at typeamom and her own site, Send Chocolate reflects her passion for her children and autism. The Autism Sucks blog is her brainchild.

Saturday, January 10, 2009

Am I Doing It Right?

I feel so fortunate that Bacon is 'high functioning' and that he appears to everyone to be a 'normal' kid. I am also beyond blessed that our school district is so great at offering the services that he needs and has such excellent teachers for him. 
I recently returned to work full time though, and am not as involved in his day to day (read here every single second of everything that is going on) activities. I am worried that this is going to cause all kinds of trauma and distress to him in the long run though. The guilt is sometimes horrific. 
Also we are still having all kinds of issues with sensory potty training issues. Part of it is attributed to age I know, but then part of me feels like this will be a never ending battle because of the Asperger's. I cannot remember the last time we went a full day without a pee or poop accident. We take away privileges, we remind him endlessly to go, and still nothing works. He is about 75% trained and has 3 months until he turns 5. I wouldn't be so worried if he wasn't going to mainstream kindergarten, where peeing your pants can turn into some kind of ridiculing nightmare. 
He also still won't sleep in his own bed. He starts there, but always ends up in our bed. We have tried the Super Nanny method of escorting him back to bed 7,952 times, we tried weighted blankets (which freaked him out) sticker reward charts, money, begging and nothing works. I get up at 4am so the constant up and down just doesn't really work for me because I have to sleep in order to be alert for work!
Did I do it wrong by not getting him into OT? Did I do him a disservice by not keeping him in psychotherapy with the lady that was by the train tracks? (Trains are his thing, and every time a train went by he went crazy.) Or am I doing okay, by sort of letting him work it out on his own with school and seeing how it goes? 
He has made so much progress! He can have a conversation with people, he can recognize people's feelings, he can write his name! He is adding! He asks me how MY DAY WAS! Things I NEVER thought I would see...and I know that some parents of kids with Asperger's and Autism will never see. 
I still worry that I am doing it wrong, that I am not doing enough for him. Am I crazy? Or is this what being a mom is like? 
Mrs. Tantrum has a 4 1/2 year old son with Asperger's. She has been married for 11 years, and works full time outside the home. To read more about her crazy life,  her thoughts about random things, Coffee, Anxiety and more, head over to her blog Momma's Tantrum. She posts there every day, or pretty darn close to every day. 

Sunday, September 21, 2008

A Day in the Life on the Spectrum

Most of the time I have no idea why my daughters start a tantrum. It is usually only in hind sight, I can hypothesize what led up to the tantrum although, I never know accurately why or what instigated the revolting reactions known as The Tantrum. Before I go on, let me clear up what I am talking about when I say tantrum. Because, a lot of kids have tantrums. They usually throw them when they didn't get their way or maybe when they didn't have enough sleep or are hungry. And, to a stranger, that is what our daughters' tantrums might seem like at the moment. But please, let me elaborate >>>

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