I'll admit it. I'm not a huge fan of Valentine's day. I just don't get why you need a day to tell those you love that you love them. But, I do have kids who love it and so I celebrate it. Since it was on a Saturday this year we had double the celebrations. Friday was spent celebrating at school where I helped with Ian's class party. The kids came home with loads of candy and treats. We did Millie's hair in a Valentine heart and Matthais's guitar valentine box won "the coolest" by unanimous vote.

Saturday morning I treated the kids to Valentine donuts and Chocolate milk and we did Millie's hair in another heart hairdo.



For dinner I made a tasty Island Pork Tenderloin, coconut rice, green salad with chocolate dipped strawberries. For desert we had a fabulous heart shaped chocolate and strawberry cake. The kids thought it was so cool to eat with candles and of course wouldn't leave it alone. Even though Adam PROMISED not to do anything he gave me $50 gift cards to pamper myself. First stop: haircut! I didn't do anything for him and felt a little bad but I deserved it. Last year I promised him I wouldn't do anything and then I ambushed him with a naughty candy bar poster. I am lucky to have so many little loves in my life! But...I make sure they know I love them everyday...not just on February 14th.

If only love could cure autism

For all of those who witnessed my meltdown at church yesterday...I am ok. I haven't really talked about it a lot but things with Ian have gotten a lot worse in the last few months. First at home, then at school and now at church. Having a child with autism is like having only half of a map. You know where you are and where you want to be but there are all these roads and avenues you can go down...you're just not sure which one is actually going to get you to your final destination. The information out there about the treatments for autism are overwhelming and conflicting. There is even a group who believes that we should not be trying to cure autism rather...we should accept autism for what it is. Either way, it is my role as a mother to one of these very special children to help him succeed and reach his full potential. It really is a difficult road with lots of potholes and dead ends. Sometimes the road is very lonely. Sometimes the road is very hostile. What I wish from everyone else is just a little patience and understanding. My child in not bad. And...I'm not a bad parent. We are dealing with our situation the best we know how!


Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.

I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?

All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.
Three-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on autism. She is a columnist for Autism Asperger's Digest and Children's Voice and a contributor to numerous publications and websites around the world. For reprint permission, book excerpts or to explore Ellen's work, please visit http://www.ellennotbohm.com/

Embrace your inner dork

Sometimes I say things I think are cool or make sense but when I think about it later I want to hit my head against the wall because I feel like such an idiot. I don't know why random, idiotic things seem to jump out of my mouth all the time. They're not usually offensive things (although, I do that too, see previous post!) but just stupid, dorky things. Today as I was driving home from the store I thought of a really dumb thing I said yesterday. I was just about to beat myself up over it when I thought, "ya know what? oh well, so you're a dork! Embrace it!" The last couple of years have been very hard on me and on my self-esteem. But, I'm finally starting to feel better about me. Here are a few things I've learned:

* You can not MAKE people like you. Either they do or they don't. Not everyone will and that is ok.
* Pretending to be someone you're not (i.e. interests, appearances, hobbies) will not pay off. Eventually you will get tired trying to lead a life that's not really yours.
* Being single minded about friendships leaves you feeling lonely and feeling left out (at least this is true for me). If I'm always relying on the same group of friends for entertainment, I'm going to feel bad when I'm not invited which then leads to feelings of negative self worth. (why didn't they invite me? is it because I'm such a dork??)
* I'm learning to come out of my shell when it comes to initiating friendships. I am always scared to invite someone to lunch or out to dinner because I am afraid of rejection. But, I've realized...I am a good person. If someone doesn't want to have lunch with me, oh well. Their loss.
* Your self worth should not be based on how many lunch dates and girls night outs you're invited to.
* Your outer looks are nothing compared to your inner beauty. Or lack of inner beauty. Being loving and kind is far better than being a size six with gorgeous flowing hair.
* My family and friends love me for me! Messy house, stinky sweats, dorkiness and ALL!
* I am a daughter of God. Even if I feel that no one cares, he does. And I am worth something in his eyes. Not just something...everything!

Things are really starting to feel good. I am ok with me...something I haven't been able to say in a really long time. I am a dork. And...I'm ok with that! Dorks are really cool! If you know me, you know this is true! :)

(picture courtesy of Ian)

I'll just shut up now.

So, yes, I am a very opinionated person. I have all kinds of ideas about all kinds of issues, some of which I share, some of which I keep to myself. Sometimes for the sake of conversation, I will voice my opinion. Case in point. Yesterday I was thinking how badly the one-year-old I watch needs a haircut. I would never come out and say to his mom "it's time for a haircut" but I was sure thinking it. I have major issues about the way my daycare kids come to me. I mean, I don't think they need to be dressed to the T when coming to daycare but often I do have to take the children on errands or to appointments and people think these are my kids. You should have see the looks when I took the kids to walmart yesterday and two of my daycare kids were less than dressed for the weather (no coats, short sleeves and the baby had NO socks!) Owen and I were dressed warm with our coats and Owen had a hat. Oh and the baby's crazy, too long hair. And the time she brought the five-year-old in pajamas except they weren't pajamas I was told. I guess they were leggings for boys. I can't take them places like this unless I bring as sign that reads "They're not my kids People!!" So anyway, I mention that I'm taking Owen to get his haircut today and daycare mom says "ya, baby needs a haircut too. I just can't bring myself to do it." So I say, "that's funny, I was thinking that just yesterday. You can do it. I love it when my kids have just had haircuts. I think they look sharp" You should have seen the evil look she gave me. "well," she says "I don't like the way you BUZZ your boys hair. I think it looks stupid." All I could do was chuckle. I wasn't telling her to buzz his hair (which, technically I don't buzz my boys, I just like it on the short side!). I was just mentioning that I thought he needed a haircut too. Geesh...

I guess I'll just shut up now.

For Miss Jen

This one is for you!

We love and miss you!

My smarty pants kids (A shameless brag)

Last week was our semi-anual SEP's. Matthais's teacher shared with us his recent Iowa test scores. I was completely shocked and stunned to see that percentile was 99%. Do you know what that means??? He tested higher than 99% of the nations 5th graders. I knew he was smart but I would never put him in that range.WOW! He gets that from his dad. Although I was pretty bright when I was younger, having four children has wiped me of nearly every brain cell I have. Millie's teacher also had fabulous news for us. She has gone up 12 levels in reading and that was as high as they could test her.She has already met every second grade goal. Her teacher always has glowing things to say about Millie and told us how kind she is to everyone. We talked about the "friend" issues she's been experiencing and hopefully that won't be as much of a problem any more. Ian's report wasn't so fabulous but that is for a different post! On the down side, both teachers told us our children lack in confidence. That was kinda hard to hear since I hope to raise confident, strong children but, look at their mom. I have always stuggled with self esteem and confindence issues. Not a trait I'd hoped to have passed on...

Something fabulous I've been meaning to share

My friend emailed me FHE's for the entire year! They are all very cute and they follow the primary theme "My Eternal Family". If you would like your very own copy then leave your email address.