autism sucks

Calling All Siblings

accidentalexpert@gmail.com (Accidental Expert) — Tue, 10 Nov 2009 16:32:00 +0000

So much time is spent trying to understand and help our autistic children. And rightfully so. They're road is not an easy one. But, for Just one moment, I'd like to step away from needs of my autistic child and focus on the needs of his brother and sister. Today, I would love -- and need -- the perspective of siblings.

I have four equality beautiful, yet uniquely different children. Two have special needs. Part of me hates that description because to be honest -- all children have special needs. But back to my point -- I have one child with Asperger's Syndrome/Bipolar and another with Bipolar/ADHD.

To say our home life is chaotic would be an understatement. Much time and attention is devoted to keeping the two calm and on an even keel. This leaves the other two, especially my oldest, feeling the void.

Now, we try out best to take time out to spend individual time with each child. We've explained the differences in our family, and the fact that fair is not always equal. But still, I see so much anger, so much resentment building in my teenager. And this affects not only her interactions at home, but all aspects of her life. She can be extremely kind and compassionate, but turn around and let loose her anger on anyone in her path. Yes, I know some of this comes with her age, but there is so much more behind the normal teenage angst.

So I am calling out to siblings -- young, grown, etc. I would love your perspective. In your own experience, what worked, what didn't? Are there things your parents did that helped you better understand your sibling/s? Did you resent the time spent with your sibling and if so, did you grow out of this?

While there is not nearly enough awareness and interventions available for those with autism, the same can be said for their brothers and sisters. I would like to think that growing up with a sister or brother with special needs can create an awareness, an understanding not found in others. It can give people a greater level of compassion and empathy. But this does not happen on its own. So today, I would like to start the process of purposefully molding not just my complicated children, but all of them

I am the mother of four children -- a teenager, a toddler and tween twins. My twins both have their "issues", one with Asperger's Syndrome and Bipolar, the other with Bipolar and ADHD. This means our house is anything but quiet and reserved. I also write a blog, Raising Complicated Kids, that chronicles our experience with our not-so-average family.

Bet you didn't know you were a writer!

noreply@blogger.com (T.) — Sat, 07 Nov 2009 08:35:00 +0000

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 com Together, we can get through life with autism. Tina

Is the CDC quietly revising autism numbers behind our back?

noreply@blogger.com (T.) — Sat, 26 Sep 2009 20:29:00 +0000

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.

A Super Mom I'm Not

accidentalexpert@gmail.com (Accidental Expert) — Wed, 12 Aug 2009 01:31:00 +0000

This is my first time posting to this blog, so bear with me. Its just that this topic has been weighing heavy on my mind lately and it hit a chord on my blog, so I thought I'd share. ------- Scattered. Space Cadet. Flake. These are all terms I'm sure have been used to describe me. Maybe because over the years I've backed out of more than my fair share of commitments. Its gotten so bad that I now run when I see a well-intended parent seeking volunteers for some good cause. Its not that I have a fear of commitment, its just that I can never commit. If I do, the Murphy's Law that is my life automatically kicks in and all hell breaks loose. Either there's a meltdown, a rage, sheer exhaustion or all of the above involved. Lets face it, these tend to get in the way of making 100 cupcakes for the school play. Then I'm left to make that awkward phone call telling the nice organizer I can't do whatever it is I'm supposed to do. This is followed by the equally awkward silence or heavy sigh as the person on the other end of the phone expresses their obvious displeasure with me. Its during these times that I really wish I could scream at the top of my lungs, "Don't you get it, I have REAL problems here." But since I don't make a point of advertising our situation, there's no way for those in the outside world to know. To them I look like any other mom -- one with messy hair, more than a few extra pounds and no make-up yes, but pretty average all the same. So, how do I keep getting myself into this situation? Because deep down I want to help. I'd like to be the one helping others instead of the one accepting it all the time. In my dreams I fancy myself the room mom, the cookie mom, the church volunteer. Then my kids could remember their mom as the one who was always involved, always there to lend a helping hand, instead of the one too harried to brush her teeth. The solution? I have a few ideas brewing. I'm toying with the idea of sporting a sign that reads something like: DANGER: SPECIAL NEEDS MOM. APPROACH WITH CAUTION. Or maybe I can just hand out cards describing our present catastrophe. The problem is, after reading a few lines of what our average day is like, I'm not sure anyone will believe me. That's what happens when you have children with hidden disabilities. They "look" normal, and for the most part can act normal too. So even if you do 'fess up, many people will look at you in total disbelief. Then starts the minimization. "Oh, it can't be that bad." Or, "honey, all kids go through that phase." So I think the next Super Mom who corners me in the parking lot asking if I could "be a dear and....." will just be given a link to this blog. Maybe then she'll find a little empathy for my scattered brain. If nothing else, it will give me a good exit so I can wallow in my flakiness in peace. I am the mother of four children -- a teenager, a toddler and tween twins. My twins both have their "issues", one with Asperger's Syndrome and Bipolar, the other with Bipolar and ADHD. This means our house is anything but quiet and reserved. I also write a blog, Raising Complicated Kids, that chronicles our experience with our not-so-average family.

Autism-Through A Sister's Eyes

noreply@blogger.com (flyinglogicmonkey) — Tue, 28 Jul 2009 19:33:00 +0000

Autism, a six letter word here meaning "a neurological disorder that can change lives and wreak much havoc" has taken residence in my home for years. Both of my siblings have been diagnosed with high functioning autism. Autism certainly isn't easy to live with. I share a room with my seven year old sister, a feat that requires much patience at times.

How do you explain that at 8:00 in the morning, you don't yell at the cat to get out of the closet? (Who cares that the cat is wearing a tiara? I'm trying to sleep!) How do you explain that you can't understand someone when they are yelling at the frequency of a car alarm? How do you explain that you are busy and can't play with plastic toys? Again and again and again and...

When they wake up at 3 in the morning because they had a bad dream or they sob their heart out because they miss the cats that died in a fire...when they ask "why God?"... when you yourself ask "why God?" When you meet someone new and they ask "Is she five?" and you say "No, she's almost eight" and it breaks your heart...when she's excluded from a group of kids, and you see the parallels between seven-year-old girls and high school cliques, and big-sister syndrome kicks in which makes you immediately want to go make it better, but you know that, sooner or later, you just won't be there...When you are having a bad day, and she comes up, wanting a hug, and you snap at her to leave you alone, and her face crumbles, and you feel lower than the bacteria that live on bacteria that live on a piece of dirt...And when you apologize and she forgives you like nothing ever happened, that's autism.

And when all is said and done, yes, she still has autism, but she is your sister, and she does need to be loved. Autism is just one aspect of her, not what defines her. And, as hard as that is to remember, it makes all the difference.

Now, if you'll excuse me, I need to go love my sister.

picture of eyeglasses, cc, via flickr, sheepguardingllama

JBug grudgingly admits that she is Tina's fifteen year old daughter (after all, she has to have someone to blame for her DNA) and is big sis to JBear and JBean. She blogs for Geek 4 Kids, (with the younger siblings and Tina) and her personal blog is FlyingLogicMonkeys.

Now we are condoning discrimination? oh, HELL no!

noreply@blogger.com (T.) — Fri, 12 Jun 2009 23:15:00 +0000

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.

Lookie, we have an award

noreply@blogger.com (T.) — Tue, 09 Jun 2009 06:28:00 +0000

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.- Commitment to Quality Education.
2.-Betting on the inclusion of Tics [children with tics] in the classroom.
3.-The effort of parents, professionals and educational centers in incorporating the Tics into the educational process.
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.-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

Why Can't I Teach My Child Self-Control?

noreply@blogger.com (T.) — Tue, 19 May 2009 07:34:00 +0000

the following is post from my personal blog, dated two years ago.

Trying to teach any child self-control is tough. When you are dealing with a child with autism, there are added challenges. It isn't that they can't learn, they do. It's just that with autism, often learning takes the form of rote scripts that are hard to apply to situations that deviate from the taught scenario. The ability to adapt just isn't there. I tell you this so that I can tell you this story.

Last night, J and I wanted to go out. We don't get a lot of opportunities to do that, because even though I have given birth to the World's Most Responsible 14 Yr Old, let's face it, leaving her in charge of two younger kids with autism is something to question. But last night, my littlest one said that J and I needed to go out. You need to understand that she was falling apart earlier, not so much in a catastrophic way but more in a "I am really whiny and complaining about everything" way. The Wii can do that to all of my children. Hell, it can do that to me!

JBean was trying to convince me that we needed to let them stay home. We were planning on a late movie, so there would only be an hour that the kids would be up. JBug puts them to bed for us. To assure me that I was making the right decision, JBean said:

"Momma, I can do what they taught us in Sunday School today... SPUD.
Self-Control
Pause
Understand
Decide

I can control my self!"

Most parents would be thrilled by this. Instead I took it to heart as my failure. When you homeschool, everything is your fault. I said to to J, "I have been trying to teach her this stuff for years, and she picks it up in five minutes in Sunday School? Maybe I need to send her to school to learn, because she isn't getting it from me. I'm failing." He looked at me and said, "She got it today because you have been going over controlling herself over and over again. Repeat, repeat, repeat. It clicked because of you." My eyes filled with tears, and I spoke..

"That was the right answer."

T, who takes it all too personally

Let's Talk about Autism and Homeschooling and ..Craziness

noreply@blogger.com (T.) — Wed, 06 May 2009 10:01:00 +0000

Hey everyone! Today I am appearing on Special Needs Kids Talk Radio, so come check it out! 10 a.m. PST and 1 p.m. EST (noon, CST). We are going to talk about autism, homeschooling and what it's like being the "odd one out" in my family. You can listen by clicking on the link, and then the little special needs square takes you to the show. If you register, you can also chat and ask questions for me to answer on air. Come and listen!

From the website:

We are talking to Tina Cruz today about homeschooling her 3 kids and being the only "normal" person in her household, which makes her the strange one. Tina has a great sense of humor, despite her trials and tribulations

This is the first time I have done this, so let me know you are listening. I am ~~terrified~~ ~~bewildered~~ nervous!

T, who hopes I don't stutter and say "uhm..." a lot

Tina 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 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 editor and creator here at Autism Sucks. She is the editor of the Special Needs channel at Typeamom, LA Special Needs Kids Examiner. Her personal blog can be found at Send Chocolate.

Some Thoughts on Autism Awareness Month

noreply@blogger.com (Shash) — Mon, 04 May 2009 03:45:00 +0000

The month of April has come to a close, and with it ends Autism Awareness Month.

However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.

But we as a community are fractured. Broken. Divided.

Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.

To help us weather this storm.

Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:

Start thinking about what the future holds for our children on the Spectrum.
Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.
Acknowledge that not all children can be "cured" of Autism, and that most are not.
This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.
That money has been funneled into the wrong areas for far too long.
Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?

NO.

We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.

If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?
Start building a community; one that serves ALL in it.
I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".
Remember that we are not perfect, and that there is so much to learn.
Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…
Don't scare people by sending frightening messages related to Autism.
Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.
Appreciate how far we have come…
Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.
…but remember we have so much further to go.
We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.
So let's get together and feel all right.
Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.

So, same time next April then?

crossposted on 5 Minutes for Special Needs Shash is a mom of 2 boys, one with Asperger's Syndrome and one we're not sure where he'll land on the spectrum. You can find her tipping at windmills as a Teaching Assistant in an Elementary School. Shash also writes at her home blog, Diary of a Crazed Mommy.

What's it like to have a "normal" child?

noreply@blogger.com (Jenn's Kiddos) — Thu, 23 Apr 2009 23:05:00 +0000

I have no idea.

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.

The Division in the Autism "Community" SUCKS!

hellokittiemama@gmail.com (hellokittiemama) — Sun, 19 Apr 2009 05:18:00 +0000

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)

noreply@blogger.com (T.) — Sat, 18 Apr 2009 09:47:00 +0000

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.

Three Cheers For Poop!

noreply@blogger.com (Kat) — Fri, 10 Apr 2009 13:49:00 +0000

Never in my life did I think I would call my child over to look at my poop. Never. Disgusting, right? Now, we've all taken a look at our own BM's (bowel movements for those that haven't discussed poop extensively in a clinical setting), perhaps been impressed or grossed out, but that's between you and you, and is extremely personal. But how do you toilet train an Autistic child who isn't speaking yet, and rarely makes nonverbal requests (unless you include gesticulating wildly when he catches a glimpse of Rice Krispie squares on the kitchen counter)? Modeling the appropriate behaviour is one way (hence showing Max my poop). Another key part of toilet training for a child with Autism is getting him used to the routine of toileting, even before he is actually ready to toilet train.
Max will be 3 years old on April 23rd. We know he isn't anywhere near being ready to "poop in the potty". It may take him a year or even two before he can manage it. If you think about it, there is a lot required for going the bathroom. If you break the process down, it's no surprise that kids, let alone kids with Autism, find it challenging. We are breaking the process down into tiny steps for Max so that he will gradually be able to incorporate them into his routine. The hope is that when he is ready, toilet training will be less stressful on all of us because he understands what is expected of him.
This is the toileting process as I see it:
Recognize that you have to go to the bathroom
Let an adult know you have to go the bathroom (verbal or nonverbal communication)
Go to the actual physical bathroom
Lift toilet lid, get little toilet seat in place
Pull pants down, pull underwear down
Sit on toilet
Relax
Poop
Wipe bum
Pull underwear up, pull pants up
Get down from toilet
Admire poop (you know you do this, admit it)
Flush toilet
Get up on stool to wash hands
Turn water on
Soap up hands (the soap texture is hard for some Autistic kids)
Rub hands together
Rinse hands
Dry hands
Do a big cheer for completing the process
That's no less than 20 steps! Geez...and we parents expect our kids to get this down in a day? Seems a bit unreasonable, even for a neurotypical kid.
We have reduced the process down to 3 steps for Max:
Change diaper
Put poop in potty, flush
Wash hands
He seems to be fairly comfortable with these steps, and isn't objecting to having his diaper changed nearly as much as he used to. I think this is because he knows that when we go in the bathroom, it is to change his diaper. We are being very clear about what is going to happen by using an activity strip, and telling him what we are doing and what is going to come next. He now reaches for the handle to flush the toilet after we put his poop in the toilet, and then moves to the stool to get up to wash his hands. I need to add a "dry hands" image for him, and also put a picture of a diaper on the front of the bathroom door so that he can either point to it, or bring it to me when he needs a diaper change. This process will not be completed in one day, but it will eventually result in Max being toilet trained. We just have to remind ourselves that this is a marathon and not a race.
One more thing - if you live in Canada, and your child is over the age of 3 years old and has a disability, you are eligible to receive funding for diapers from Easter Seals. With the costs of Max's therapy mounting, I am looking forward to getting help paying for diapers (though hopefully we won't need it for very long!)
Katrina Carefoot is a working mom with two children, her son Max, almost 3, and her daughter Cameron, almost 1. She works as a Marketing Manager in Toronto and writes about Autism, pop culture, and all things mommy at Fickle Feline.

Autism and Girls

noreply@blogger.com (T.) — Thu, 09 Apr 2009 09:42:00 +0000

this is a repeat of a post on my personal blog from about a year ago..

Not a lot is written about girls and autism, because it is just beginning to be understood. When Hans Asperger first classified it, he thought he had found a boys-only disease. It wasn't until years later that we are finding that more girls are affected than originally thought. The rate for those referred to for diagnostic tests is about ten boys to every one girl. But of those, the rate of diagnosis is one in four. That's one girl for every four boys diagnosed. This rate holds true for both classic and high-functioning autism/Asperger's Syndrome.

In the book edited by Tony Attwood, Asperger's and Girls mentions that one of the reasons that girls are less often referred for diagnosis could be that because girls are naturally more nurturing than boys, they take the "shy and awkward" girls under their wing. In this way, they teach them the social rules.

As a mother of both a boy and a girl with autism, I would agree that girls give more benefit of the doubt than boys do. Girls in elementary school can be kind and helpful to a girl who just doesn't get it. JBug, my oldest daughter had this experience with a friend. She is naturally slow to warm, reticent around new people or experiences. Her friend took her aside and taught her "Embarrassing Lessons," which was really just a way to teach her to laugh at herself and not be so self-concious. JBean has first grade friends that are very kind to her and accept her for who she is, at least at this age. In contrast, JBear has struggled with his peers, who find him "weird" and "obsessed." He often feels ostracized when it really was a matter of just being able to read cues in order to join a game.

JBug's friend also came alongside her and taught her some of what Brenda Smith Myles calls "the hidden curriculum," that is, all of the things that no one ever tells a child, that are considered polite, or kind. For instance, if JBear were to talk about Indiana Jones and as he was doing so, the person he was speaking with kept glancing at his watch and looking over my son's head , think that has happened before? that would be pretty clear to me that the person had somewhere to go and the conversation needed to come to a close. Someone with HFA/Asperger's would not get this reference. He would have missed the entire "non-verbal" conversation. According to a UCLA study, 93% of conversation is non-verbal. So you can see how difficult it can be to interact if you are effectively blind to the social cues!

In my experience, girls in elementary school are much more forgiving of social gaffes. By the time a girl reaches jr. high, it is expected that she will "know" the right things to do and say. If she does not, most girls will distance themselves from the girl who is less socially-savvy. Since girls bond with their "drama," any girl who doesn't play the game will almost certainly be, if not ostracized, just not befriended. I work as a church youth worker with jr high girls (now going into high school). For two years I have watched this happen. The interesting thing to me is that if a girl is more severely affected by Asperger's, they do give a little more leeway, but they still do not count that person as a friend. If a church group operates this way, I can only imagine that school must be even more difficult for a girl with Asperger's Syndrome.

I ran across this article a while ago, about the perils of Asperger's as a female. The information is older, but it bears repeating.

Dr Lorna Wing is a veteran psychiatrist who devoted her career to studying autism after her only child, Susie, was diagnosed with a severe form of the condition. She says girls on the autistic spectrum often appear "normal" at first meeting. "They appear to be more social than boys with autism, but then you notice that their sociability tends to be inappropriate," she says. "They might go on and on talking about the things they are interested in, and they fail to notice that you're not remotely interested. They have a poor ability to 'read' people, and that's something that's often very highly developed in females."from the Guardian

The article goes on to state that it can be difficult in the workplace for a woman with autism, because she doesn't pick up the social cues or display the empathy and understanding that many associate with females. She may face problems because of judgment.

This means that women with autism often struggle at work because they lack what is often taken for granted in women - the intuitive ability to understand where people are coming from and how to manage situations. Because of subtle sex differences, we tend to "expect" more of women in the workplace in terms of smoothing things over, of saying the right thing; and whereas we would excuse a man who lacked these abilities, we are subliminally a lot less forgiving of a woman who has similar shortcomings. from the Guardian

With all of this gloom and doom, sure I am concerned for my girls' futures. JBug has never been diagnosed with Asperger's, but has many traits that come with it, including brilliance, which will serve her well. She is already smarter than I am...shhh! Don't tell her! I believe JBug will be fine, eventually. She will find her niche and her "people"...once the drama from high school stage is finished. She doesn't have time for the gossip or the "immaturity" of her peers. Sometimes she is too serious for her own good. She will land in a scientific community, where Logic is king and Rationality rules all.

My youngest daughter is an enigma to me. JBean has been diagnosed with Autistic Disorder, but is pretty high-functioning. I don't quite know what will happen with JBean. She is content to sit and play with her toys, making voices for all of the Ponies, Pet Shops and Puppy in my Pockets. She makes up long and winding songs about the same. She will often play, undisturbed for hours, if I let her. But she also enjoys cuddling with those she loves, reading (or rather, learning to read) and playing/arguing with her brother and sister. All sounds normal, doesn't it? And yet... there is that certain "something" that makes the autism diagnosis.

She cuddles a little too much, too hard, and doesn't stop when first asked. Her voice is just a bit *too high-pitched, almost baby talk. When she wants your attention she goes from 0 decibels to 999,999 in a split second. We say she has two settings: normal, and car alarm. She is very private about her thoughts, and I don't know if that is because she isn't keyed into them, or she just keeps them to herself. She is very difficult to read, and I am good at reading people.

She is still so young. Who knows what time and training have in store for her? And maybe as we go, more research will be completed that explains more of the mystery behind autism and what exactly we can do about it. I am thankful for articles in mainstream publications that shed light on the issue of girls and autism, but they are few and far between. For now, I continue to work with her, read a lot and pray. I definitely pray.

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.

Perspectives of a Guilty Parent

mr.busypantsadventures@gmail.com (Jeannie) — Fri, 03 Apr 2009 12:30:00 +0000

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.

In my house, EVERY DAY is World Autism Day

noreply@blogger.com (Shash) — Thu, 02 Apr 2009 07:00:00 +0000

I'm not sure if you are aware of this, but I have a child who is Autistic. You may not know, or even realize it when you meet him. It might take a few minutes. Or an hour. But at some point when you meet my son, you will begin to notice he acts different. It might be the way he flaps his hands. Or the way he hums to himself. Or the way the conversation he has with you keeps ever-so-slightly going back to the things he likes. It could be because you notice the things he's interested in are younger than he is; or he talks older than his years. You might notice his anxiety. But, if you don't realize it, that's okay too. That's okay because we have worked very hard to help him fit into society's mold. We have embraced Early Intervention, ABA, ESE, Inclusion, and a myriad of other therapies and interventions. (Thank you, Quest Kids and UCFCard!) In short, we have worked very hard for you not to notice the Autism. However, it is a part of him. It is him. Those quirks will never disappear. They may diminish, but they will never fade totally away. And while it is okay with me, it is clearly not okay with society. I say that because the media heralds the "Recovery of Autism"; that "Autism is Reversible". I guess in some cases it could be. Just not in any cases that I know of. That I personally know of. Not to mention, the cases that are brought out to the media are the young kids. The ones who benefit from Early Intervention. Many Autistic children will benefit from Early Intervention therapies (my son did!). The articles about older kids are usually how they are coping, how they are adapting to society. How they are dealing. Because it is difficult. Because it is hard. These young kids grow up. They become adults. And while Early Intervention can and does help Autistic kids, those kids get older; and as they age, the therapies, the interventions, the assistance gets less and less, until there is no more. Until they are totally on their own. So today, on World Autism Day, while we should celebrate our successes and appreciate how far we've come, we also need to realize how much further we have to go. We need to reevaluate how we help our children grow into and become adults. Interventions and assistance should not and can not stop when they need us the most. And they do need it. Don't be fooled. Starting today, let's discuss what we can do, how we can do it, and what we need to do to get this ball rolling along. Talk to me:

The clock is ticking. His life depends on it.

Shash has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy>.

The Blame Game

noreply@blogger.com (Kat) — Tue, 31 Mar 2009 14:02:00 +0000

When it comes to your kids, it's easy to take credit for the good stuff. For example, there is no denying that my son Max takes after me in the looks department. As you can see from this photo of me as a child next to a photo of him, we share the same pale skin, eyes, nose, chin, and smile. My husband Scott and I joke that he is such a physically robust child, he is our wee viking, a clear descendent from the Danish side of my family. He also has a stubborn streak a mile wide, which both my husband and I can take credit for, as Max embodies everything Taurus, just like us. But the Autism, where the hell did that come from? In the past I have joked that my son looks like me on the outside and Scott on the inside. Kind of mean spirited in retrospect, but my husband has a thick skin and (hopefully) knew I was kidding, sort of. I haven't found any research that conclusively proves the cause(s) of Autism. There is certainly a genetic component though, as once you have a child with Autism, there is a one in seven chance you will have another child with the disorder. So, whose fault is it then? We each have some quirky family members we could point fingers at, but perhaps the apple doesn't fall that far from the tree. What I mean to say is, maybe both my husband and I have qualities and characteristics that have created the perfect Autism cocktail. Let's start with me. I have major sensory issues. I am extremely sensitive to the light. My sunglasses have to be double tinted so that I can see when it's sunny out. I wear my sunglasses outside until the sun has set. Florescent light makes me crazy. This has been true my entire life. I remember taking a drafting class in high school (anyone who went to Unionville High School will recall the huge concrete shop rooms with the high ceilings and harsh light), where I had to get permission to do my work outside of class because the lights gave me migraines. I am constantly turning the lights off in my home, preferring natural light, and even then, the darker the better. And it isn't only light that is an issue for me. I am an auditory learner, so if there is too much going on around me from a sound perspective, I lose my mind. This is a challenge as my husband and his family are loud talkers, who carry on multiple conversations at the dinner table. I have trained my husband to pipe down, but the rest of them aren't so well behaved. Love them to bits but mealtime with multiple Carefoot males can be overwhelming to say the least. I am also incapable of carrying on a conversation if there is a television on in the background, or music playing. The list goes on. I don't like wearing socks, wool is a no-go, as are tight clothes, and the sound of someone cutting their nails makes me climb the walls. I am incapable of sitting still - either tapping my feet or my hands until Scott takes hold of whatever appendage of mine is flailing about and secures it. I don't want to out Scott and all of his eccentricities (seems unfair and overly critical). I will say that he is not the most social person I have ever met. Typically he won't pursue going out, but if someone calls him to say, watch a UFC event, he will usually go. I find that his default is to enjoy spending time alone, and while he can be the life of the party, this behaviour is largely manufactured so that others will enjoy his company. Our son Max shares all of my sensory issues. He is extremely sensitive to light and sound. He is a sensory seeker, and needs deep pressure on his legs and arms to help him self-regulate. He often does the typical hand flapping that is common with Autistic children and rocks back and forth when he is stressed. He doesn't seek out others to play, and largely enjoys playing on his own. Looking at Scott and myself, it makes me think maybe we both have some Autistic tendencies. When you add them together, it's not hard to see where Max gets it from, good looks and all. Katrina Carefoot is a working mom with two children, her son Max, almost 3, and her daughter Cameron, almost 1. She works as a Marketing Manager in Toronto and writes about Autism, pop culture, and all things mommy at Fickle Feline.

Our Story is a Blur

noreply@blogger.com (Jenn Brockman) — Sun, 29 Mar 2009 23:22:00 +0000

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.

Obama On The Special Olympics Bowling Team: My Two Cents

aliciajclarke@yahoo.com (Alicia (aka Dr. Mom)) — Thu, 26 Mar 2009 19:44:00 +0000

On the tonight show several days ago, President Obama made a joke. A joke that he undoubtedly quickly regretted. A joke that probably did not even register on the radar of most of America. But, a joke that engendered a strong reaction from many in the Special Needs Community. I have read many posts about the President's gaff. I personally was not offended and tend to give people the benefit of the doubt when they make an honest faux pas. I do, however, respect that there are people who were offended or hurt by what he said. They are entitled to express their opinions and feelings on the issue. My personal fear, however, is that some individuals are using the President's mistake as a license to rant about Obama as a person(i.e, making assumptions about his level of sensitivity and his overall attitudes) thus diluting the REAL societal issue. The man put his foot a bit in his mouth, no question. However, I personally feel his joke was not made with malice or intent to harm. I have no issue with accepting his apology without asking him to prove to us HOW sorry he truly is. A sincere apology, for me at least, always suffices. Really, this is not an "Obama" issue, but a societal issue. Namely, the normalization of certain words and jokes that devalue those with cognitive/intellectual challenges. Until the people in the 'Special Olympics' and on 'the short bus' are seen as human beings with VALUE in our society, nothing really will change. Many a punch line has been made at the expense of the cognitively challenged. Derogatory language regarding differently-abled individuals has become ingrained in our culture's common vernacular. Words like 'moron' 'idiot' and 'that's retarded' are common slang as are one-liners about 'riding the short bus,' or equating someone's abilities to "Forrest Gump." We scarcely give it a second thought, until someone we love is the one ON the 'short bus.' It is then that such comments take on a whole new meaning. When such slang or joking references are made, whether by a public figure or a friend, there are 2 roads that we can take. We can take it as an opportunity to stand on a soapbox and lecture on how and why we are offended. Or, we can create an opportunity to educate, enlighten, open dialogue and share pieces of our lives that help others empathize. To spread awareness. Awareness occurs on a grass roots level; planting seeds every where we go. Just as important as what we say is HOW we say it. Raising awareness can not truly work in harmony with finger pointing and personal judgements. We need to recognize that most people have little to no personal experience with people who have special needs. If someone comes across as lacking sensitivity to the issue, they need to be met with understanding and education, not criticism and a laundry list of how they are a horribly insensitive human being. Our first priority is to spread awareness, not moral outrage. What we are dealing with is an issue of ignorance (in the true, Webster's definition of the word) not intentional malice. And the best eradicator of ignorance is education. We are called upon to raise awareness. Awareness is best achieved by telling our stories, one at a time, in any venue to whomever will listen. People don't want or need to be lectured. They don't want to feel like we're humorless. They don't need to feel humiliated and infantilized for their unintentional mistakes. They don't want their motives to be judged with undeserving harshness or have assumptions made about their character. So, what do we do? Ignore it? Laugh with them? Accept it? No. Spread awareness, but awareness free of negativity. Not focusing so much on why we are offended, but on humanizing the lives of those with Special Needs and the people who care for them. We plant a seed when we share, one at a time, and awareness begins to grow. Let us spend less time judging the hearts of others and more time sharing our own hearts and experiences. Free of stone throwing. Free of character assumptions. Full of love for our daughters and sons who we are defending, suppressing the urge toward righteous indignation. Raising awareness is our task. Let us do it with thought and sensitivity; choosing our words with the same care we expect from others. Let us not forget that fairness and forgiveness are two-way streets. Alicia D. has a doctoral degree in Clinical Psychology, is the stay-at-home mother of 4, and her eldest has autism and other disabling conditions. She has upcoming publications in Today's Caregiver and Autism Spectrum Quarterly. She blogs about motherhood and life on Welcome To My Planet.

The Word Doesn't Change the Kid: Autism 101

mr.busypantsadventures@gmail.com (Jeannie) — Sun, 22 Mar 2009 21:04:00 +0000

As a new author of this site, I thought I'd start by introducing myself. My name is Jeannie and my six-year-old son, Mr. Busypants, has mild autism. Below is one of my earliest blogs. I thought I'd start off on this site by sharing my story about when autism entered my life and what having a child with autism means to me. Miss Chattyshoes is interested in all things potty. The other day she stood over the toilet to say "bye-bye" to its flushing contents. Suddenly her nuk popped out of her cheeky little face, instantly sucked down to the point of no return. Perplexed and concerned, she pointed to the toilet and begged for "ki-ki." At this young age, Miss Chattyshoes is already declaring her independence. She does so in many ways, but the most obvious is her reaction to peer influence. One of her best buddies is M, a neighbor from across the street. M is 7 months her senior and full of words and wisdom. For example, we've been calling Miss CS's nuk a nuk for 18 months. She spends one day with M and her nuk is now a ki-ki. The same goes for her sippy cup, which was just that: a sippy cup. But M calls it a ba-ba, so now Miss CS calls it a ba-ba. What I knew about autism came from two sources: the movies (specifically Mercry Rising and Rain Man) and a film we watched in the 6th grade (so bizarre that I even remember this particular film) that described autism as a condition where the person was lost in his own little world and behaved like a chimpanzee. The other tidbit I knew of autism (or thought I knew) was that one day a toddler was talking and engaged and seemingly the next his social and speech skills were lost. This was autism to me. And so I began working through my fear that one day my baby would wake up and be mentally, emotionally and socially gone. With me, Mr. Busypants had a boisterous laugh that filled the house. We spent hours running around our house in Lisle, circling through the kitchen, dining room and living room, hiding and seeking, stomping and giggling. With others, he was stoic and serious. When the word autism re-entered my vocabulary, fear as I had not yet known it came as well. It took a while to work through the anguish. For me, the first step was recognizing what autism was and what it wasn't. The DSM-IV defines autism as (I) a) impairment in social interactions marked by a lack of eye contact, facial expression and social gestures. CHECK. b) impairments in communication manifested in a delay in spoken language and (later) repetitive language and a lack of spontaneous make-believe play or social imitative play. CHECK. c) restricted repetitive behavior patterns, interests and activities including preoccupation with balls and matchbox cars (CHECK), inflexible adherence to routines and rituals including but not limited to eating French toast sticks every morning two years, throwing a sippy cup and all unwanted food off the high chair tray, being hypnotized by spinning objects such as ceiling fans, and flicking objects such as door stops for extended periods of time (CHECK CHECK CHECK CHECK). Stereotyped and repetitive motor mannerisms including head shaking, picking up every stick within a 2 mile radius at the playground, and general Monk-like behavior (think 2002 series appearing on USA about an obsessive-compulsive ex-cop who solves crimes) (CHECK). DSM-IV does NOT describe autism as: (a) futureless (b) hopeless (c) relationshipless (d) joyless (e) speechless (f) loveless In a nutshell, the word did not change the kid. Mr. Busypants is spectacular. You need only look into his eyes to see the wheels turning--the thinking process is like a roller coaster ride. Fast, intense, thrillseeking. It's all there in those bright, blue eyes. He sees things we can't. He organizes. He engages. He responds. He follows through to completion. I fall short on all of the above on a semi-regular basis. From the early age of 21 months, Mr. Busypants had a fascination with water. He couldn't hear me scream his name two feed away, but turn the bath tub on three houses down and he was there in a flash. Part of that fascination extended to the toilet. A week into our new Aurora house, he too "broke" a toilet. Though Miss Chattyshoes hovered over her daddy in the master bathroom as he diligently retrieved her invaluable nuk, I mean ki-ki, from this vital household fixture, Mr. Busypants had dad replacing the first-floor toilet after flushing a mega-block. This kid is larger than life; he thinks big. 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 Mama Busy Pants.

Coming Home

aliciajclarke@yahoo.com (Alicia (aka Dr. Mom)) — Tue, 10 Mar 2009 19:30:00 +0000

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.

What's The Point of School?

noreply@blogger.com (T.) — Mon, 02 Mar 2009 08:51:00 +0000

The following is in response to a comment made on the last post regarding homeschooling for autistic kids. It refers to a comment from a special education teacher. Go read it, first. Califmom's response needed to be its own post. Sorry to be petty here, but if the argument to send my child to school is being put forth by a teacher who has more grammar/spelling mistakes in his comment than content, I have a difficult time swallowing that pill. However, I'm a bigger person than the product of my (formally schooled) environment. So, I'll bite. What I read in Mr. Black's comment is that my son should attend a formal, school setting in order to experience poor treatment by his age mates and failed social situations, which will then require the support of a team of professionals. This scenario is seen as superior to providing my child with social experiences outside the academic setting, where stress is lower, and success is higher, which then result in positive experiences in the building blocks of his social competence. Underlying all of this is an assumption by Mr. Black that I, as the parent of the child, check my opinions at the door, trust the system, and let the professionals do their job. Mr. Black, just so you know, we were not always homeschoolers. We didn't even choose this path, initially. In fact, for over 7 years, my children attended an expensive, award-winning private school that touted its ability to address special needs. My personal educational background is in child development and elementary education. We did not arrive at our decision to homeschool because we had some idea that it would be a great way to exclude our child from the artificial construct we currently call our schools, an institution largely existent as a remnant of the Industrial Revolution and the requirement that we produce a society of factory workers with a similar world view--followers, non-thinkers, non-questioners. We arrived at this decision via a difficult path, but we are beyond pleased with the results we see in our children. More, our family and friends are impressed with the change they see in our children. You see, nowhere else are we grouped in such an artificial fashion as we are in a traditional school setting. Children are grouped by age, and often ability (or disability), and then expected to derive value from this socialization. I have yet to find a workplace (the argument most put forth for a school-based education is to 'get a job') comprised of same-age coworkers. Have you? Aside from prisons and psychiatric wards, nowhere else do we lock people in for the day and attempt to control their behavior. Seems odd that we expect only 1 of 3 of those scenarios to be appropriate for all members of our society. I want more for my child, and I have the ability to provide it. Maybe it's not what everyone can provide their child. Maybe it's not the right thing for everyone, but it is what is meeting the needs of my children and our family. It's also the beauty of living somewhere that provides us this freedom. If you really want to boggle your mind, Google unschooling. That's what we do. I'm guessing it'll make your head fall off, but maybe it will just open your mind. Because of her son, califmom knows more than she wants to about Asperger and Tourette Syndromes. She doesn't think autism needs to be cured. She does think that autistic spectrum disorders are more likely orders--another way of being in this world. Visit her at califmom and califmom homeschools.

Autism and Homeschooling: Why?

noreply@blogger.com (T.) — Thu, 26 Feb 2009 22:54:00 +0000

...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.

Something You Can Do...RIGHT NOW

noreply@blogger.com (T.) — Fri, 13 Feb 2009 18:46:00 +0000

For Valentines...just in time. Go and comment on Party Planning Professor... every comment will earn a donation for Autism Speaks. More importantly, we gain autism awareness. So, make my Valentines Day...go do it! Now. Thanks and love to you! 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 channe at Typeamom. Her personal blog can be found at Send Chocolate. Autism Sucks is her brainchild.