Always a bump in the road

Just when things with Ian were getting to be half way normal (normal for us anyway) , He decides to throw us a curve ball. Guess that's how it is with autism...you never know what you are going to get. His behavior has improved greatly. That is, as long as he is on his medication. Now he is experiencing insomnia. There are nights that he is awake for the greater part of the night. Like from midnight until 5 or 6 in the morning. There are times we can get him back to sleep and there are nights that he is wide awake, ready to play. I have no idea why this might be happening now. He's always been a fairly light sleeper and he's always woken up several times at night but this is a whole new experience; one that I'm ready to be rid of. He did sleep pretty well last night but that was after two nights of pulling all-nighters so I don't think his body gave him any choice. I did hear him wake a few times but he never actually got out of bed until sometime early this morning. Is this a good trade? good behavior for no sleep? I'm not sure. If it is one of his medications making it so he doesn't sleep we might be back to square one. I'm not sure I can handle that... I have really enjoyed the new and improved Ian. Hopefully this is just another bump in the road.

Follow up on Ian

I know my last post about Ian was very discouraging and I apologize. Life in our house has been chaotic for awhile and I've been very discouraged. I had been praying very earnestly about what course of action to take with Ian. The direction I was being led was the medical route and so I became convinced that there was something going on that caused the sudden change in Ian. Things fell into place so wonderfully and I was able to schedule all the appointments I needed to. I even got into the psyciatrist 5 weeks ahead of schedule (and found out later that I shouldn't have been able too, we should have been taken out of their system and became a "new patient"). Ian is healthy (fabulous news!) and although I was really hoping to avoid medication but we have started him on one. I feel really good about it and we are already seeing progress. I really feel so much lighter already. Thanks for all the thoughts and concerns!

The five steps of grieving

Denial (this isn't happening to me!)

Anger (why is this happening to me?)

Bargaining (I promise I'll be a better person if...)

Depression (I don't care anymore)

Acceptance (I'm ready for whatever comes)

When Ian was first diagnosed with autism I felt nothing. It meant nothing to me. I knew he was delayed but I felt he would eventually catch up. The second time I was told Ian had autism I cried, still not really understanding what it all meant. Over the years I find myself going through the steps of grieving over and over. Just when I feel I have acceptance, I start over again. Right now I am in the anger stage. I am so angry that no one can tell me exactly what is wrong with my child. I mean, most children with a disability also have a cause i.e. genitic, sickness, accident but with austism they just don't know. Was it something I did during pregnancy? Was it something I did when he was a baby? Did we not nurture him enough? Was it immunaztions? Was it an illness? Why can't someone tell me?? As the years go by and Ian's peers continue to grow and learn and Ian just stays stagnit, his disability becomes more apparent. When he was five and still acting two the gap wasn't as wide as now that he is nine and still acting two. And now with all the added behavior problems I feel like we are starting all over with the initial diagnosis. I've had Ian into several doctors lately and we've had them run several tests. The results? nothing. We know no more today about Ian and his behavior than we did last week. Sooooo frustrating. And I am angry. I just want a cure. I just want someone to help him. I just want him to be normal...

I am participating in Walk Now for Autism

You will all be recieving the following email from me soon:

Please join me in my fight to make a difference in the lives of the more than 1 million Americans living with autism today.

I am participating in Walk Now for Autism to help find a cure for autism. Autism is the second most common developmental disorder in the United States affecting one in every 150 children born today. Despite some promising discoveries, the cause of autism is unknown and a cure does not exist. Research is crucial. Every 20 minutes another child is diagnosed with autism. Not only must we find ways to improve the quality of life for children and adults with autism, but we also must find a cure, and soon.

Walk Now for Autism is our chance to make a difference in the fight against autism by raising money for autism research and heightening public awareness. Please join me in my fight as I raise money to help fund essential research. You can donate to Walk Now for Autism and/or join my team online using the links at the bottom of this page. Donations can also be mailed to Autism Speaks using the donation form located on my page or send me a check made out to Autism Speaks.

Thank you for taking an important step in the fight against autism.

Donations are tax deductible to the fullest extent allowed by law.
Autism Speaks 501 (C)(3) Tax Id #: 20-2329938

Matching gift program: Many companies provide their employees with matching gifts. Please consult your employer on its matching gift guidelines and attach matching gift forms accordingly.

I have decided to go ahead and join the walk now for Autism. I really wanted to do it last year but found out about it too late. I am looking for donations and also a team. There is no fee to sign up and walk but they want everyone to try to raise $250 If you are at all interested contact me

Do it for him

If you know me, you know I stay as far away from politics as possible. It's the "don't cause a scene" part of me. Not that I'm not interested in what is happening in our society...I'm just not very out spoken. There is one bill that is of particular interest to me this year. It's called Clay's law and it would required private health insurance to cover the cost of treating Autism Spectrum disorders. This is a HUGE deal to parents with children who have Autism. I can only imagine how different our life would be if this law was in effect 6 years ago when Ian was diagnosed! Did you know that a typical ABA program costs between $16,000-$25,000 a year??? Not even an option for us. This bill would mandate that our private insurance paid for this. Here are the basics of SB 43:

*Requires private health insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder

*Coverage will be provided to individuals under the age of 17

*Coverage under this bill is subject to an maximum benefit of $50,000 annually for a child who is less than 9 years old and a maximum benefit of $25,000 annually for a child who is between 9 and 17 years old

*Coverage provided for treatment of autism spectrum disorders, defined as any treatment generally accepted by the medical community or the American Academy of Pediatrics as an effective treatment for children with autism

*The bill includes coverage of the following treatments: Habilitative or rehabilitative care, Early intensive behavior therapy, Pharmacy care, Psychiatric care, Psychological care, Therapeutic care, Occupational therapy, and Speech therapy

*The bill applies only to fully-funded health plans governed by state

*If passed the bill will go into effect on July 1, 2010

The final vote on this bill is today and I really wished I had rallied around it and petitioned my senator. It's time to step up to the plate and give our kids what they deserve...a chance at life!

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/

It all makes sense now!!!

In another sign pointing to an inherited component to autism, a study released on Monday found that having a schizophrenic parent or a mother with psychiatric problems roughly doubled a child's risk of being autistic.

http://www.msnbc.msn.com/id/24465288/from/ET/

Did you Know?

* One in 150 children in the United States are diagnosed with Autism?
1 in 94 are boys. Five years ago, 1 in 2500 were diagnosed with Autism

*Almost Every 20 minutes a child is diagnosed with Autism, 67 children are diagnosed a day.

*More children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined .

*Autism is the second most prevalent developmental disability in the world today.

*Autism costs the nation over $90 billion per year, a figure expected to double in the next decade

*Autism receives less than 5% of the research funding of many less prevalent childhood diseases

*Boys are four times more likely than girls to have autism

*There is no medical detection or cure for autism

Incidence vs. Private Funding
Leukemia: Affects 1 in 25,000 / Funding: $310 million
Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
Autism: Affects 1 in 150 / Funding: $15 million

All information taken from the www.Autismspeaks.com

Holland it is

Not long after Ian was diagnosed with autism someone gave me this story

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley
Well, yesterday was one of those days that I wanted back on the plane, I wanted Italy. I don't know what is going on with Ian but he has become increasingly difficult. His screaming is what is getting to me the most. He doesn't talk, he doesn't cry, he screams! I finally had to lock him in his room for my sanity and his safety. He continued to scream from his bedroom "don't lock me up!". Yep I instantly felt guilty. What am I suppose to do? After it was all said and done and I was lying in my bed with Ian in my arms I asked him "why? why Ian? why can't you be my good boy?" He lovingly responded in his classic Ian way "yes I am your boy! yes you are my mommy!" and that said it all. Welcome to Holland.