A cure?

I received an email today asking me if I wanted to cure Little Bug and giving many pointers on how to recover him. First of all, this is a deeply personal decision that each family needs to make for themselves and not something to be casually offered. We are not talking about going to get a coffee or out to lunch, we are talking about treatments that could be dangerous. You need to consider both the pros and cons and decide what is best for *your* family. Once you know that, who cares what other people think- do what you know in your heart is best.

To answer the email, no, we do not want to *cure* Little Bug. Why, you ask- because there isn’t anything wrong with him. Yes, he has difficulties. Yes, he may never do certain things. Yes, he gets frustrated. But he is happy too. All you have to do is see his smile or hear his laugh to know that he is happy and that he knows he is loved. You can see that he is making progress *every day*. Just because it isn’t on the same pace as everyone else, doesn’t make it invalid- just different.

In general terms, I personally do not believe in curing. I believe in helping people achieve their highest potential. I believe that there is room in this world for diversity. Do I believe that it is easy to be different? No. From my personal experience as a gay transsexual man- its not.
If you want perspective on this, go ask the source. Read about people like Dr. Temple Grandin or Jason “J-Mac” McEliwain.

For a dose of hope and perspective, read The Game of My Life. Or watch this video:

(it’s the 8th item down on the list)
http://video.google.com/videosearch?hl=en&q=j%20mac%20basketball&um=1&ie=UTF-8&sa=N&tab=wv#

Words by mail

Little Bug’s words were delivered yesterday by USPS- which is great because he was getting of the old Signing Time’s we had. We had a pretty good night last night- he wasn’t completely better from the stomach virus he had, but he was in a better mood and seemed more active.

One of his favorite things at school is circle time, and more specifically, the shake it song:
You shake, and you shake, and you shake and you stop! Shh!
You shake, and you shake, and you shake and you stop! Shh!
YOU SHAAAAAAAAAKE ANND YOOUU STOP! Shh!

He now does the song by himself- no words but motions. He will sit in the back of the care and go through it, shaking his hands in the air, stopping and shaking some more. Last night, we were able to transition this to a new action- jumping. I was so proud of his ability to accept that change. I was waiting for it to be difficult, but he loved it and kept signing AGAIN. We have some new words to add to our list. I am currently sorting out the 10 he had before therapy and the rest. I am also sorting his signs into the ones he had before therapy and the ones after. It’s a bit of a monster, but it will let us accurately measure his progress. We also need to begin keeping track of which are UNPROMPTED and which are PROMPTED. For progress, they differentiate those two- as the goal is to get him not only *more* words, but *unprompted* meaningful speech- like he used to have. He used to say two word phrases and sometimes even sentences- I DID IT! We’ll get there. Little Bug will do what Little Bug will do when Little Bug is ready to do that. (For those of you who don’t watch signing time, it is from a song called Shine- about waiting and hoping for development) I need to remember this and not worry so much.

New Words:
Open
Stop
Paw (Potty)
Sit
Down
Be- big
Baby

New Signs:
Big
Blue
Colors
Red
Draw
Sit
Jump
Swim
Open
Come

Silver Lining

People often tell you that you need to look on the bright side or look for the silver lining. I used to scoff and roll my eyes- more happy b.s. to fill your head rather than dealing with being upset. Looking back, I realize that sometimes, there really is a silver lining. It may not always be immediately apparent or easy to accept. For example, I am 26 years old and have lost three parents- when I was 7, 11, and 19. Most people wouldn't see the silver lining in that. However, to me, I have gained a lot of strength, determination, and independence from going through this. I never would have met my mom if my birth parents were alive. Sometimes, a silver lining can only be found once the clouds are gone and you have time to reflect on what you saw.

Yesterday's silver lining was more immediately apparent. Little Bug had the flu and needed to be changed frequently. For the first time, he was able to tell us that he went potty- he signed POTTY and said PAW. He was able to tell us where it hurts. I was able to calmly take his temperature for the first time ever. Yes, it sucks that he was sick, but it was so much easier for him this time. We could find out what hurt and where and what he wanted to help his tummy feel better.

He has a new sign- leaf. Leaves have become very interesting to him now that it is fall and they are scattered about. On our walks, I always give him a handful to throw. He loves to watch them float to the ground and he always laugh.

It was a dark and stormy weekend....

emotionally. Little Bug had trouble with everything starting Saturday afternoon at about 2 and right on through last night. I don't know what is going on or how to help him. A lot of it seemed really sensory based- getting dressed, putting shoes on, changing his diaper, etc. was traumatic.

He had play group and Autism Education yesterday. Play group was pretty rocky at first- he wandered around outside not making eye contact or listening to anyone. Not being destructive or anything, just not engaged. The teacher thought that if I went and did something fun with other kids, Little Bug might join in. I began to do elaborate chalk drawings of Little Bug's favorite fish- octopus, shark, angel fish, and Nemo- or BO! as Little Bug says. Well, I had the other 19 children from both classes around me, but not Little Bug. Eventually, he came out of his funk and was able to settle in once we moved inside. His teacher wonders if he is "too smart" to play outside- basically she thinks he gets bored with the lack of challenge- physical and mental- and withdraws. My answer- what are we going to do about it?

Autism Education happens at our house on Mondays. His teacher came over bringing lots of puzzles and a baby doll. It was interesting to watch Little Bug begin to pretend with the baby. Unfortunately, the puzzles tanked- they were too easy. His teacher says that she is keeping really busy because of Little Bug- she has had to buy new supplies for class because he is advancing in areas like matching, memory sequences, and puzzles much quickly than any of her other students.

We took our wonderful dog Frank to the vet yesterday for shots. They both did good and we hurried home.... only to find that we left GREEN SHARK at the vet- queue Halloween theme and meltdown screams. GREEN SHARK is currently Little Bugs favorite toy- he carries it everywhere and constantly chews it. He has an identical shark that is pink, but apparently, that one is no good and *only* GREEN SHARK will do. So Little Bug didn't want us to leave, but also did not want to leave himself. We ended up all leaving- after a 30 minute meltdown about his shoes. We rescued GREEN SHARK and Little Bug did the funniest thing. He walked to the center of the waiting room, held the shark over his head, and yelled SHARK! The entire office- including vets and staff- clapped for him. It was the funniest thing ever.

I am hoping that things will even out here soon. It has been a really tough few days and honestly, we need a break- for us and for Little Bug. He has been biting himself a lot in the past few days. He has also been pretty aggressive towards me, DN, and Frank. I want so desperately to help- I just wish I knew how.

Little Bug has a few new words- spoken and sign:

Spoken-
Baby

Sign-
Grandma
Grandpa

We realized something else this weekend- Little Bug has no way of identifying himself and also doesn't seem to realize that the person in the mirror is him. He will stand in front of the mirror and sign to himself and laugh. If you tell him that its him, he usually says no and then goes into a diatribe in his made up language. I am sure it is a musing of genius- I just can't understand.

After yesterdays Autism Education class, we have new things to work on:

• Safety Directions- Kinda like red light green light, but when you are walking in public. Little Bug loves it and hopefully it will reinforce STOP! as he knows no fear and is a runner.
• Stranger safety- he has taken the human connection part of his teaching a bit too far. He has been trying to hold hands with strangers- which is terrifying as all it would take is one person to see that opportunity and be gone with him. We are going to create social stories with pictures and try to teach him who is "safe" and who is not without warping his little mind forever.
• ID Bracelet- we are working on getting him to wear an ID bracelet as he can't say his name, that he is lost, or that he needs help- other than sign language which most people don't understand. Yesterday, he wore it for 5 minutes before he took it off- which is a vast improvement.

Wish us luck. I have to be honest, at times I feel like I am tinkering around in an area that myself and everyone us have very little understanding of.

All you need is love

Little Bug is just one of the nicknames we have for our son. We also call him Shea Bug and Love Bug. He got the nickname Love Bug in an interesting way. For about the first year of his life, he would cry for extended periods of time for no apparent reason. Looking back now, its easy to see that they were sensory issues that as novice parents who had never heard of SID and had no fracking clue what was going on we missed. At the time, the best way to calm him down was to turn up the stereo as loud as possible and dance. The vibrations seemed to calm him down. His favorite tunes? Imagine- John Lennon, All You Need is Love and Blackbird- the Beatles, Maybe I'm Amazed- Paul McCartney, Somewhere over the Rainbow- Iz. Punk and emo worked too, but not as well.

One thing that DN and I have waited for is to hear/see I love you from Little Bug. DN and Little Bug were getting ready to leave, and I blew Little Bug a kiss and told him I loved him- both with speech and sign. He signed I love you to me! It brought tears to my eyes and all I could is smile.

I love you Little Bug- these are for you:

http://www.youtube.com/watch?v=rLxTpsIVzzo
http://www.youtube.com/watch?v=xkejcsvdpuQ
http://www.youtube.com/watch?v=cm2YyVZBL8U&feature=related

Fear and panic in Tacoma

I find that there are days when it feels like I just found out that Little Bug has ASD and I am bitten by Fear all over again. Fear is a nasty creature that creeps in when you are most vulnerable and seems to grab hold to your heart and mind. Fighting Fear is daunting and overwhelming. One thing you have probably noticed about me, I am a very methodical person. I love me some lists and organization. Today, I have organized my fear:

• Safety- Little Bug is a runner and self injures. I worry that he will escape from our home, which recently has felt like a fortress, or that he will run off in public. To combat this, I am going to purchase and install door chimes- as he has figured out the traditional baby safety devices and locks. We are also trying to train him to wear an ID bracelet. Self injuring is a losing battle. At this point, when he does it, we just try to distract him to a more healthy way of getting that sensory input.
• Speech- I am so proud of his 30 spoken words- with 10 of them unprompted. When I think about it in terms of development, my panic begins to rise. All we can do is keep doing what we are- Signing Time, sign language and our own version of PROMPT- and wait for speech therapy.
• Independence- Little Bug doesn't know when he is wet or soiled. He doesn't understand that HOT= dangerous or another billion safety examples. I worry that he may never be able to leave us and have an independent life of his own.
• Relationships- The past two months have been the best we have ever had with Little Bug- as we have finally gotten to have a relationship with him. He is doing really well with therapy and making HUGE strides forward. I am terrified that he will regress- I don't want to feel another kind of loss.

I think a majority of my fears are routed in grief- I grieve for the dreams we had for him. I grieve for the the time we missed as we didn't have much of a relationship with him. I grieve for the time we are missing now because of all the ASD things we need to do. Most of all, I grieve because I was powerless to prevent this. I accept, that while I can't prevent this, I can help Little Bug excel and reach his full ability.

I realized, that for the first few months of this, I rushed to solutions and research as a way of avoiding dealing with this grief. I was the person who researched and reached out. I was the person who shopped for therapy tools and said- we need these. I was the person who hid behind a mask of acceptance through work.

I realized this yesterday when we went Halloween costume shopping- which was hell. He screamed when we put one on him, but screamed when we took it away. He tried to hide in the bottom of the grocery cart because he was scared. There was nothing we could do to make it right.

I also realize that I will accept this with grace and strength and tears. I realize that DN and I are stronger in our relationship as ASD has made us a team. I realize that I would give Little Bug the world to help him- and I will do it every day. I realize that this will be more than okay- this will be great and we will enjoy it- just differently than how we had dreamt it.

OT

Little Bug's new OT dropped by today to do an assessment. Which of course meant that the things we said he had difficulty with, he didn't and vice versa. Luckily, she doesn't think that we are pathological liars. She told us she sees this all of the time. We talked about the tings he struggles with:

• Getting dressed- It makes those wrestling shows look like child's play
• Safety Issues- he lacks that natural fear that keeps us all safe
• Self Injury- he bites, head bangs, and pinches- why, because to him, its like twirling your hair and is how regulates his system. It doesn't make it any easier to watch as a by stander though.
• Sleep- While going to bed has gotten better since he has given up naps, his quality of sleep sucks. He's very migratory and chatty in sleep and is constantly doing "death rolls"- he grabs you or the blanket, holds on and rolls.
• Clothing issues- besides getting dressed, he has issues with how clothes feel and at times down right refuses to wear them.
• Grocery Stores- too loud, too bright, too many people. This causes him to rock hard in the cart, which in turn leaves bruises on his back

She was incredibly understanding in that she gets that one day what may be an issue is not the next. She was very receptive to our concerns. L is going to come to our house for his visits as most of the things he has difficulty with, you can't do at a therapy center.

He is going to start using a weighted blanket tomorrow night. Hopefully that will increase his quality of sleep and increase his mood and temperament throughout the day. Additionally, he is going to be started on P's and Q's- basically, dog chews for people made from surgical tubing. We had given him a Chewy Grabber, but he destroyed that in less than a month. So we are going to try these. This may sound crazy, but we are not above getting him a safe dog bone to chew on. We just want to keep him from chewing on himself. Finally, she taught us some compressions to get him proprioceptive input that we can use before getting him dressed.

All in all, a pretty good first visit. Little Bug seemed to like her a lot. He loved, loved, loved the compressions. I think that the weighted blanket will certainly help him.

Video camera= ATTACK MODE

So about that video of Little Bug doing sign language.... I don't know if that is going to happen. Last night, we got out the camera and decided to do some signs. He would sign away for me until I hit the record button. It was as if the record function set off some dormant gene that was coded to get him to charge the camera in a variety of creative ways- scooting on his bottom across the floor between signs or casually standing up while he was signing to oh so slowly get nearer to the camera. Then... ATTACK OF THE 50 foot TODDLER AND HIS SMUDGING FINGER OF DOOM!!!!!!! FLEE IN HORROR!

I am hoping to get it done sometime soon- once I clean the camera and devise a way to keep him in one spot. Although, I suspect tying an anvil to his waist isn't appropriate- DARN! Seriously though, the camera comes out and he acts like a great white shark- speed in to check it out and then attack- only instead of teeth, it is tiny fingers that apparently were dipped in honey before being applied directly to the lens of DN's camera.

Little Bug often reminds me of a raccoon- he persevates on shiny objects and once he gets them in his hand, he ain't lettin go. We have figured out ways to use this to our advantage- letting him listen to music in the grocery store, letting him see the keys to calm him down, etc. The downside is that this obsession can make documenting his growth and childhood much like making a nature film- you lie in wait and then take the picture of your unsuspecting victim and hide. Its interesting and at times, I am pretty sure we should wear a pith helmet.

Spending Freezes, More Resources, WHAT???

Many people who watched the last presidential debate noticed that ASD was brought up by John McCain and he suggested that more funding and resources were needed. This was interesting as he suggested a spending freeze- which would make services that are already hard to receive- long wait lists, huge expense to school districts, parents paying for things they shouldn't have to- that much more difficult to receive.

Please read this article:

http://www.newsweek.com/id/164790/page/1

It focuses on one person's open observations. She much more adeptly states what I am thinking.

Little Bug's Best and doing the best for him

With any child, you want to make sure you are doing your best to get them to achieve their best. Often times, with ASD and our family, it is hard to figure out what the best for Little Bug is. We have started two therapies- Autism Education and Play Group- and already a vast improvement has shown. We do our own kind of speech therapy at home using sign language, Signing Time, and the PROMPT method that his Autism Education teacher uses.

At times, it seems like too much. I put myself in his shoes and wonder what it would be like if everything I did all day everyday was hard. I wouldn’t want to do it. At the same time, I look at what needs to be done to help him reach his full potential. We are on a high wire without any training or net and are desperately trying to hold on. I worry that we are missing the fun of being on the high wire at times as we have become too focused on getting to the other side. At the same time, if we stop, it is all too easy to fall off.

There are times when this responsibility makes me feel so small and very alone. You can read my other posts to see that Little Bug’s vocabulary is based on how quickly UPS can get signing DVD’s here. We try to be as consistent as possible- as to us that is paramount for Little Bug and has helped him. But we are human and we fail- miserably sometimes.

At the end of the day, I can say that each and every decision we have made has been what we thought was best for Little Bug at that time. That doesn’t mean that it won’t change- people change, relationships change, reality changes, and so we too must change.

One of my goals for this blog is to be able to honest with myself. Another goal is that this can be a resource for other families. The first goal will always be difficult- you deal with things and sometimes that means avoidance, skewing, ranting or accepting. The second goal is far easier. We are working on making a short video of Little Bug’s signs to show people that it is possible. When I heard sign language, at first I rolled my eyes and thought RIGHT. Not because of him, but because of sign language. It is an exacting language and can be difficult for grownups to learn, let alone a mostly non verbal toddler. Little Bug’s best bested us and I know never to doubt, but to always believe him.

Another item we are hoping to post soon is his picture schedule. Little Bug has a hard time with transitions and likes things to be predictable. I feel so bad for him as life never is. What we can predict- in a foggy Ms. Cleo sort of way- is an idea of what each day will look like. We have documented them in pictures and use it to help him with his day. While he still has struggles- he would prefer to never have his diaper changed and not wear cloths- this schedule has helped. It has minimized his sensory issues with going grocery shopping as he needed a concrete idea of where we were going to prepare himself. (I could write a whole blog about the grocery store, advertising and marketing, and SID, but for now, I will leave it.)

I remind myself daily that each day is a new day- of opportunity and chance. Each day, I must do my best- for me and for Little Bug and DN. As at the end of the day, even if it didn’t work out how we intended, we always have his best in mind.

Negotiations

Now that Little Bug has a few words and a lot of signs, things are getting interesting. Last night at dinner, he signed “WANT CAT”. I wanted to make sure that I understood, so I asked him to say it again- “WANT CAT”. I explained that we couldn’t have a cat- we have a dog. Besides, having a cat makes daddy’s eyes feel like they are on fire. Then Little Bug says- “No Dog- WANT CAT.” Not sure whether that means he is trying to give our wonderful dog Frank the boot *or* if he is simply trying to negotiate- I don’t want *another* dog, just a cat.

Speaking of negotiating, dinner was full of it. Little Bug has developed a lot of eating issues. Things he used to eat all the time- re fried beans, sausage, melon, rice, chicken, cheese- he refuses to eat. For a while there, all meals had to be beige- beige meat, beige veggie, beige side. Not anymore, but at this point, we are sometimes making a couple of meals just to make sure he would eat. So last night, we were having sandwiches for dinner. One his plate- bread, roast beef, apple, one tiny sliver of cheese, and animal crackers and two chips. I had a sandwich and some chips. Well, of course, all he wanted to eat were the chips. So we began to negotiate about what he had to eat before he got chips. All in all, he did pretty well.

We have a few new signs:
Dirty
Pig
Chicken
Frog
Hopefully, today’s negotiations with Little Bug go well. I hate when I have to invade and place his whole country on time out- that’s never fun. ;)

Denis Leary

Many people in the Autism community were enraged by Michael Savage for his ridiculous comments regarding Autism. Well, Dennis Leary has joined his ranks with the following comment:

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

I used to be quite the Denis Leary fan, but to me, he lost relevance quite a few years ago and was replaced with Eddie Izzard, Lewis Black and George Carlin.
It is said that he is preying on a disability in order to get attention for his book. Other than this post I will not pay him any attention. I really just have one thing to say to Mr. Leary:

YOU”RE AN ASS-HO-OL-OL-OL-OLE. It appears that sometimes, life really does imitate art. If you have no idea what I am talking about, you can check out youtube and find videos of his infamous Asshole song.

Creature of Habit

Little Bug is a creature of habit, routine, and structure. He likes everything to have a place. He is generally a mess maker who likes to have things clean at the end of the day. He is also big on lining things up- cars, cups, applesauce, whatever he can get his hands on. For him, order seems to be extremely calming and the act of creating order through lines is a way he calms himself down.
He hasn’t done this in a while. I was holding my breath, waiting to see if it had gone away for good.

I realized last night as we were playing, it has simply changed. Now, he needs to line things up and have the same order of events when playing. For example, he lines up his cars on his garage, then he has to send the cars down in a specific order- Lightening, Sally, and Thomas. I wasn’t paying attention and disrupted this cycle. I don’t think I have ever seen such a look on his face. He looked as though he had been hurt.

I have to admit, I am not sure what to do about this. In the grand scheme of things, I am not sure how big of a deal this is. When playing with his cars, does it really make a difference? I get that the root of the problem- scripted play and a strict adherence to order- is what matters. What I am unsure of, is how much do we change it?

Everyone goes on about curing Autism. I am not sure there needs to be a cure. Instead of a cure, I think we need to help people reach their highest potential and realize that there is place for diversity. This is a careful line and different for everyone. For Little Bug, we need to work on unprompted speech and sign. He may have 100 words, but he can only say 10 and sign 20 unprompted. Other than those, his speech is scripted. I agree that in that case, we need to intervene and get him to become unscripted in his speech.

When it comes to things like order, calming activities- “stimming”, etc. I am not sure how much it matters. We all have our little quirks and he may have more than others, but that doesn’t make it bad. It just means there is diversity and place for it in our world.

In other news, we received our paperwork to apply for a financial hardship in order to have Little Bug's OT and ST covered. We are crossing our fingers and hoping that it works out. It was kinda difficult to do- they wanted to know our medical expenses for the last 12 months. Which is like asking how many grains of sand are on the beach? Little Bug has had 1 surgery, 2 CT scans, 1 set of x rays, three visits to his surgeon at Children's hospital, three visits to the ER in Tacoma, several Urgent Care visits, and innumerable visits to his PCP. They wanted to know what we paid for them and what they actually cost. I didn't realize until yesterday how much we have spent on medical care- its astronomical! Wish us luck.

So Good!

I wanted to capture Little Bug's progress in both sign and speech. Here are the lists:
Spoken Words:
Ma
Da
Bubble
Do- dog
La- water
Bo- boat
diddy- kitty
Des- Pleiades- MA's dog
No
Go
Yup!
APPLE
Fo- foot
Fish
Bus
Ca-ca- Car (and you thought it was dirty ;) )
Rek- Shrek
Shoes
Socks
Nice
Rocks
Shark
Blue
Horse
Cow
Up
Step
Hat
Octopus
My
Mine
Truck
All Done
Want
Eye
Owie

Sign:
My Turn
Together
More
Eat
Drink
Go
Sleep
Bath
Potty
Cat
Dog
Cow
Horse
Duck
Bird
Fish
Milk
Apple
Cereal
Boat
Water
Mom
Dad
Please
Thanks
Help
Ball
Baby
Caterpillar
Sign
Time
Shoes
Socks
Diaper
Car
Train
Grandma
Grandpa
Cracker
Ice Cream
Again
Candy
Sorry
Cry
Yes
No
Stop
Cookie
Hat
Octopus
All Done
Bubble
Cook
Share
Wait
Want
Back
Airplane
Hurts
Bike

All said, he has almost 100 words- 36 in spoken and 60 in sign! This is amazing! In the last two months, he has gained 86 words in sign and speech. Life is getting to be easier we gain more communication. Another are he is doing well in is identifying body parts. In August, he couldn't identify one, he can now identify the following:
Belly
Foot
Mouth
Ear
Back
Nose
Eye
Shoulder
Head
Knee
Arm


His classes went great yesterday- his Autism Teacher said that we could begin working on waiting without verbal cues. She also said that he is going to be a hard one because he is so smart, he figures things out much faster than she has experience with when it comes to puzzles and problems.

His Play Group Teacher couldn't stop raving about how well he was doing and how smart he was. Its good to hear other people recognize what we see everyday.

Mel watched him this weekend, and they had a blast! He gave her a hug when she was leaving and wouldn't let go. He cried and I think she might have cried too. It is so good to see him attaching to more people- like Mel, and his teachers. He doesn't leave class now without giving them a hug.

Sick and Tired

Little Bug and I are sick and tired and tired and sick. He has a doctor's appointment today because he has had a lingering cough. I don't think its anything, but the last time he almost had pneumonia, so we are getting it checked out.

Given that he was so sick and tired, he did really well last night. We are continuing to work on sharing. Last night was a bit difficult for him to share, but he was able to consistently sign MY TURN without prompting whiling pointing at an object. He also did really well at waiting.

I know we still have miles to go, but this is so reassuring to get constructive small steps in place in order to work towards bigger goals. His Autism Teacher and the staff at Birth to Three are saints. I honestly don't think there is anything we can do to thank them for everything that they have done. We will always be grateful to them. They work tirelessly for not much money and for rewards that most people find silly- like a sticky slobbery kiss or a hug from a kid. Most of us would say "THAT'S my bonus?", but they simply say thank you and hug back. They wish for your child to succeed and want to see it almost as much as you do. All in all, they are truly vested and amazing. Little Bug is lucky to have them.

So, our good friend Mel is coming over on Sunday to watch Little Bug so DN and I can have a break! She is also going to work on the idea of a Halloween costume with him. Getting him dressed in regular clothes has been quite the battle recently and when shown a Halloween costume the anger becomes strong in him. She is bringing a Thomas the Tank engine costume to our house to see if he will do it. If he doesn't, its no big deal, but we would like to try.

Here's hoping his appointment goes well and we feel better soon!

Progress

Houston- WE HAVE PROGRESS! I repeat PROGRESS! Last night Little Bug and I worked on pointing, waiting, and turns just as he would with his wonderful Autism Education Teacher. He did an awesome job. He was able to wait 5 seconds! Now before we all scoff- as I did initially too- remember how long 5 seconds is. Remember that he is two and remember that at (insert your age here) you still have trouble waiting. GOOD JOB LITTLE BUG! He is doing so good with his pointing. Hopefully, after a few weeks of doing it consistently, we can add eye contact.

We only worked for about a half hour at a time, which when you two probably feels like an eternity. But, we did continuously work on it last night- during bath time and snack time. He did a really great job.

He is doing very well with his schedule. He runs over- actually excited to see it- and wants to know what he is going to do.

We had a great time playing last night, even more fun at bath time, and he went to sleep without any fights. All in all, a good day.

Falling right into place

This weekend, we went to visit DN’s parents. These are stressful trips for me and for Little Bug, but for different reasons. I don’t particularly get along with DN’s step dad. He seems to go out of his way to call me Little Bug’s mom and to basically be rude. Often times, he takes a nap when we are around. Little Bug finds these trips stressful also because of DN’s step dad. He talks in this incredibly high pitch screechy voice and is short in the way he speaks- apparently, the other grand kids like it, but not Little Bug.

I wrote a while back that DN’s parents don’t get ASD and SID. Well, I think they might be coming around. His step dad lost the creepy voice- YAY FOR ALL OUR EARS! His mom made sure to ask about doing things before doing them. Little Bug actually let DN’s step dad hold him- this was the first time this has happened since Little Bug has been mobile. He usually tells him NO and runs.

I was very proud of DN. He knows that I am concerned regarding his parents and how they deal with Little Bug- I will be honest, I do not completely trust them as they have gone out of their way to do whatever it is we don’t want them to do in the past. For example, a week before Little Bug had his surgery for his lymphatic malformation- which involved a face lift procedure- they wanted us to visit them, but the other kids were there and the other kids are always sick. We told them that if they were sick, we weren’t coming. They lied to us- oh no, they’re fine! LIES! They both had colds and diarrhea. I was incredibly angry as it was very close to his surgery that we had been waiting over 8 months for.

Sorry for digressing. Little Bug was playing with DN’s parents while DN and I made dinner for everyone. We start to hear this horrible yelling- NO, NO, NO! DN finally yelled- HE SAID NO- WE CAN HEAR IT. And they stopped doing whatever it was that made Little Bug mad. While I am proud of DN, this cements my concerns with them- they don’t get it. They don’t get that he isn’t being obstinate or a brat- that he can’t do things for reasons we may never know.
Moving on to Little Bug accomplishments- yesterday he had play group and Autism class. He did amazing in both. He sat for circle time by himself on the mat and even did the hand motions for one of the songs. This is HUGE- I never thought he would be able to do this. It reminds me never to underestimate what a group of dedicated people can do for one extremely smart and dedicated little boy.

Autism class went great- he worked hard for most of it. He worked on waiting and taking turns and pointing. Yes, pointing. Little Bug doesn’t point. He vaguely gestures while whining, leaving you to show him any number of things before you get it right. His teacher is working first on pointing and then on pointing and making eye contact. He did a great job and only had one extremely minor melt down.

His picture schedule is finished. I made it myself in order to personalize it. Rather than have generic pictures of cloths and getting dressed etc. I did it specific to him. This will hopefully make transitions- changing from one activity to another- easier. The whole purpose of it is that you show him what is next and then go do it. Afterwards, you have him take the picture and put it in the ALL DONE basket as he says all done. This helps him wrap his mind around the fact that it is time to move on. I am hoping that as he catches on, we can have a FUN basket- pictures of things that he likes to do, but doesn’t always get to do- looking at the fish at Pets Mart, the Zoo, McD’s, the play place, etc. These will be incentives and allow him to get to control his day.

In a totally not ASD related topic, we had to get new tires- to the tune of $200.00. ARGH! It seems like financially, there is always something. A lot of it is ASD related- co payments, therapy tools for home, etc. But a lot of it is just life- random things that happen in clusters.

An angel named Ethan

Normally, I would not disclose some one's name. but considering I don't actually know this person nor have specific identifying details about him, I thought it would be appropriate- especially since we owe him a huge thank you.

You see, we took Little Bug to McD's to play and eat. Normally, when he goes, he can't keep up with the bigger kids and is usually left by himself if there isn't another toddler there. Not yesterday. A wonderful little boy named Ethan was there. At first, I was really concerned as there were a lot of big kids- kids who are as tall as me playing in there. But Little Bug held his own.

He went to climb up a set of platforms, but couldn't. He signed help to us, but we told him he needed to do it on his own- not to be mean, but to basically ensure that if he can get up there, he can get back down. He then went and sat in the play car for a while by himself, spinning the wheel and flapping his arms. That's when Ethan showed up. Ethan took him by the hand and helped him up the platforms. Ethan crawled after him through the tubes. When they came down the slide, Ethan told his mom- LOOK AT MY NEW FRIEND!

I went over and thanked Ethan's mom. I told her that she had a really special kid and that she should be proud. She didn't seem to get it- she said that it wasn't a big deal and that it was just kids playing. I told her it wasn't. I explained the Little Bug has ASD and doesn't often play with the other kids. But not today- her son made sure our son was included. It may seem normal to her, but it was so much more than that to us. I walked away from her crying a little bit. When I turned, I realized that she was tearing up too.

For me, this is a sign of hope. That Little Bug will be found and find the kind hearts of the world and he will be included. Not ridiculed. As a cynic, I have spent many nights worrying for his future- especially the torturous hell known as recess. My mind was more at ease last night than it has been in a long time.

Ethan, thank you for your kind heart. Thank you for including our son. You will never know what you did, but thank you.

Incomplete knowledge can be dangerous

http://susansenator.com/wantedchild.html

The above article is regarding a change in recommendations regarding when to test for Down Syndrome. It used to be 35 and up and now is recommended for everyone. The author discusses what limited knowledge the tests give- yes your child has a disability, goodbye. Not how to help a disabled child reach its full potential once you learn that you have a disabled child.
It scares me to think what ignorance and fear can make us do. If someone had told me the Little Bug would have Autism, I would have hope that my first reaction would be to go do the research and find ways to maximize his potential just as I have done now.

I will say that DN and I had the tests done with Little Bug. We did it not so that we could abort a child that was disabled, but be prepared. We- and more me than DN I think- needed to know. I wanted to know if he would have Down’s Syndrome and how to help him. I wanted to know what would happen if he had a disability that we couldn’t care for. Like the article says, we are lucky to have him- just as he is- and not the other way around.

What out for ignorance- it's contagious

Before I start in on Jenny McCarthy, please look at the picture above that Little Bug did- by himself.

So Jenny McCarthy went on CNN yesterday because her son is “recovered” from Autism. Now, lets forget for a moment that I bitterly disagree with her. I would like you to first watch the video:

http://www.cnn.com/video/#/video/health/2008/10/01/intv.mccarthy.cnn?iref=videosearch

First, she is a horrible spokesperson for her cause. She sounds uneducated by using words like “fricking” on CNN. She is too emotional regarding her cause. When you are a spokesperson, you need to be well educated, well spoken, and passionate- not impassioned.

Second, let’s look at socio-economic differences. She has an unbelievable amount of financial resources. She has a celebrity status- which means connections. She has the ability to not work for an extremely long time and spend every living second with her son. That must be nice. The majority of parents who have children with ASD don’t have the luxury. We work and then come home and do a different kind of work. We can’t afford therapies and are often times told that we make too much money for assistance.

Finally, I think its time we bust out the hip waders to sort through all the b.s. I feel like we aren’t being told the complete story. Did her son ever go through any other therapies besides bio-medical therapies? I would be surprised if he hasn’t, as most kiddos with ASD are recommended to have speech therapy, occupational therapy, and sometimes play therapy. Certainly, years of those therapies couldn’t have had any effect on her son- nope just the vitamins.

One quote that disturbs me is that she says to ask any mother whether they would chose Autism or vaccinations and *all* of them would pick no vaccinations. Well, I may not be a mother and I certainly don’t represent the entire ASD community and would never presume so, but you can count us out. Let me make this clear, we may not have the easiest life and the “perfect” child. Get over it. What we do have, is a wonderful child who is perfect for us. Just so you realize it isn’t all roses and sunshine, we have very bad days- days when you can just keep him safe. We also have wonderful days full of communication and eye contact. I would make the same decision a thousand times over- yes to vaccines. I would rather have him alive than dead for fear of ASD.

Now, I feel like I have given her too much attention so we are moving on. We have a new word and sign at our house- PUS! As in octopus and we know the sign too. I know to many people, this isn’t a very useful sign, how many run ins have you ever had with an octopus except for the zoo? Well, at our house, where fish reign supreme, octopus is a very important word. Great job, Little Bug- you continue to amaze me every day. It is wonderful to see how far you have come and how much further we will all keep going.

Understanding

Last night started off a bit shaky- Little Bug cried for over an hour for varying reasons. None of them were things that would normally bother him, so it was a bit confusing. The night steadily got better but included a few bumps- including two new bruises for me from being bitten. I really hope that we can nip this in the bud, no pun intended. Little did three new signs yesterday- cookie, cracker, and hot. It is really exciting to see him constantly grow and change. We busted out the markers and did some art time and continued our art time in the tub with bath crayons. If you don't have them, get them. They are fun for everyone involved and provide distractions from sensory issues that make things like washing hair and rinsing a little better.

We heard back from the state child care referral yesterday. We reached out to them through our FRC in order to find drop in child care for Little Bug for important meetings like IEPs, etc. As we mentioned before, one of our biggest concerns with getting childcare for Little Bug is that his cargiver must know ASL. Another concern is that his caregiver must not only be familiar with ASD, but also realize that a child with ASD is not a brat. (more on that later) The good news is that our contact found one person with ASL experience and one person with Autism experience. DN and I have to discuss, but I am thinking that we should take the time to meet both and see what they have to offer- it can’t hurt to see.

So, I have realized that some people don’t get it- they don’t get ASD and they don’t get SID and they believe that children affected by these are simply brats. Or maybe, they just believe that we are bad parents. I have run into this a few times in public- you know, the snide comments about how their kid would never act that way and if that were my kid, I would spank them. Well, I feel sorry for your kid because this isn’t something they choose to do on purpose. This is becoming something that is apparent with some members of Little Bug’s extended family. They don’t seem to understand- regardless of countless explanations- that he doesn’t deal with surprise transitions and even sometimes known transitions very well at all. They constantly call the day of or before an event and invite us, even though we have know and have told them that he needs preparation and we need at least a week to get him ready for a change or plan. We will talk about what we are going to do, show him pictures of it if possible, etc. One thing that we are doing to gain some ground on this for him is to create a picture schedule. I have a lot of the pictures done, however I need a few more. Once the final product is done, I will take a few pictures and post them and also let you know if it works.

Little Bug has his first Autism Education class at the center today. Here’s hoping it goes well and that he makes the transition from class to break and then to play group well. We should hopefully find out if the Child Therapy Center in Tacoma takes our insurance and what the waitlist for speech therapy is soon.