What is "normal".
I am admittedly in a heightened state of paranoia right now but I have not been able to shake the nauseating feeling that is take hold of me.
I find myself continuously thinking, "Is that flapping?". So I have to ask...when does flapping start? JP doesn't really flap. I don't know what flapping looks like in a 16 month old. But then maybe all 16 month olds flap a little? We do seem to be flapping a lot. Could this just be an awkward coordination phase that all young children go through? He only does it when he gets excited. Uh oh, that sounds like autistic behavior. But then "normal" babies clap when they get excited and we don't deem them autistic. Maybe T is trying to clap. But he knows how to clap. He isn't clapping, he is flapping. Does this mean autism? If this is a sign, should we have seen flapping earlier? Is it just emerging now as he works on motor control? Does "autistic flapping" exist at 16 months. Can I really consider it a sign?
He seems to be doing okay elsewhere. He is verbal. He probably has a dozen words. He doesn't use them a lot but he does use them appropriately. He doesn't ask for things but he does label them. He doesn't ask for a bottle but he chants bottle when he sees it. Should he be asking for a bottle when he is thirsty? JP didn't initiate. I don't know when this should begin.
I am telling myself this is a motor development fluke. A few weeks ago we got a new Baby Einstein video "Baby's First Moves". T loves it. The babies in the video do all kinds of movements: Clapping, jumping, running, peekaboo. In fact, JP loves it as well so we are making it out to be therapy. I helped JP recognize how much T loves it and now it is JP's job to try to get T to do the actions. Great therapy for both of them!
However, for a couple of weeks now T has been waving his arms more. Actually more of just his hands. It sure looks like flapping. But I didn't notice this before we got the new video. Can it just be him learning the motor development from the video. He is just discovering how much fun it is to move his limbs?
I finally figured it out! I know what the Kachow song is! For two months this has been JP's response to "what is his favorite song" but I hadn't been able to figure out which song he meant. I knew it was from the movie Cars but our conversations around the topic always left me thoroughly confused. Honestly, I think he just likes all the songs but when asked...he always replies "The kachow song".
So anyway, we finally got it straightened out. Real Gone by Sheryl Crow. He really never expresses favorites so I am excited that he claims to have one. I decided to try to get a copy so he can listen to it in his room. He spends a lot of time in there listening to the CD stories of his favorite Disney movies. This would make a nice change. And best of all, Grandma was visiting and you know how Grandma's like to spend money! So we bought the soundtrack.
The next day, he and I went up to his room to play trains. I took the CD up with us. He was very excited by the CD case. I put the music on.....................and he ran screeching from the room with his hands over his ears. He wouldn't come in unless I turned the music off. And I must state for the record that it was not loud. Finally, I did get him to come in and turn it down himself. He finally agreed to let it play as background music but it was so faint that I could barely hear it. He was still anxious the entire time it was on.
If you ask him, it is still his favorite song and he still gets hyped up during the movie when it plays. He just does not like it being played out of the context of his movie. I guess I should have seen this coming. We do this sometimes where we compartmentalize people or things and only accept them in that original format. I always make an effort to shake that up once I identify it.
Shake...shake...shake...stir...stir...stir...shake...shake...shake
So the past few days I have been playing my new favorite CD in my stereo downstairs. Unfortunately, JP goes upstairs. Today I am going to get so brazen that I am going to play it in the van. We spend so much time driving from therapy to therapy that I might as well make the drive time therapy as well, right? However, this first time I think I will save it for the ride home. No sense getting him worked up before his therapy session.
So Kachow I figured it out! But kachunk, why does everything have to become work. Why can't a special treat just be a special treat?
Thanks for all the birthday wishes! No, my absence was not because I got whisked away for a vacation in paradise. We've had travelers pass through and then my parents came to stay for the week. So needless to say, we have been living a crazy life here.
The truly sad part is that with a house full of 4 adults and only 2 children I still didn't find time to finally use the box of hair dye I bought over 3 weeks ago! Oh well, grey is the new blond, right?
Another thrill coming our way is that I get to spend the next week completing all kinds of paperwork. I have our Kindergarten packet to fill out for roundup and I also received the paperwork to complete for JP's re-verification process. Hard to believe that we have been in the special ed system for 3 years now!!! Hopefully the process goes smoothly.
Smoothly. Hmm. YeAh That haPPens.
Either way, I spent the last few days filling out a BASC-2 behavior assessment and the GARS-2 Gilliam Autism Rating Scale. I still have the Vineland II adaptive behavior form to fill out. The fun never ends! It feels like answering the same questions over and over again but oh well. It is what the school wants from us.
Anyway, I want to get back to my blog and to thinking about life but right now I am running in circles trying to live my life. Hopefully I'll be back soon!
They used to be such an event when we were kids. Balloons, friends, games and food. A celebration!
When did they stop mattering? 18? Now I could fight in a war. Perhaps after I turned 21? Now I could drink beer. (Isn't that a bit backassward?) 25? This felt like a transition into adulthood. We were finally out of college and trudging through the workplace. 30? This felt like the entrance into parenthood. After all, society seems to dedicate the 30's to raising your babies and adolescents. It seems like the 40's will be when we are forced to live through all of the teenage angst again through our children. Gee, won't that be a blast!
So here I am at 33. But I am not really feeling anything. It's just another age. I feel fully entrenched on the parenthood path. I have two wonderful boys. One five years old and getting ready for kindergarten. How can he be such a big boy already! One 16 months old and a bundle of energy. He is going to be a blast to grow up with. I have one husband who works a lot and is exhausted but still the best partner ever. We have a house that is truly a home. We are truly a family.
I look at a snapshot from our first summer together. 1990. Yep, we were 16! We were babies. There was such joy and innocence. The joy is still here but it is tempered by a loss of innocence. What strikes me is that we met when we were 16. We have now been together for 17 years. We have been together longer than I existed without him. He is truly my right arm and we are in this together!
I look at our wedding picture. I can't help but smile. We got married in Vegas. We tried the whole hometown church wedding but that just wasn't us. We could care less what flowers graced the aisle and felt it wasteful to expect our family and friends to spend $100 on a dress/tux that they would never use again. After about a month of planning we said forget it. We'd been together for 8 years already. The wedding guests knew each other. We are not formal people. Why spend the money on a formal affair. Let's just have fun and mark the beginning of our "formal" life together. Our religious belief is that God would show up no matter where we planned the celebration. So we picked a chapel in Vegas and we picked a date. We invited all our family to join us for a vacation. 40 people came. 38 from hubbies side and 2 from mine. (But don't get me started on how that felt.)
Now before you think how crazy it is to honeymoon with 40 relatives, you can relax. We spent the money we would would have spent on a wedding and treated ourselves to the honeymoon of a lifetime! We left the day after the wedding and went on to Kauai. We had an amazing time! We left our family partying in Vegas with Elvis and we spent the next week on a sandy beach sipping mango margaritas!
So anyway, back to my birthday reflections. I look at these pictures and I see such youthful innocence. I really want some of that back. I am so cynical these days. I don't like who I have become in those respects. There are days that I feel like I'd like to move my family to a cave in Antarctica. I wouldn't have to deal with the politics there, right?
Speaking of reflections, the face looking back at me in the mirror can't possibly be mine. First off, it is too round. I would never let my face get that round. Secondly, didn't I have brown hair? What are all those gray things doing there! I am only 33! 33 year olds shouldn't have to color their hair! It should still be an option, right? (BIG sigh)
Well, I look at my first 32 years and I reflect that I have come a long way. My childhood aspiration was to find a loving man and surround myself with family. I always longed for the love and feeling that comes with a tight knit family. I have succeeded. I always pushed myself academically to prove that I was as smart as everyone else. I assumed that that meant I had to have a glamorous career. I now have a masters degree that I don't use. But I do use that brain to figure out how to reach my autistic child--and we would all agree that a degree does not assure that that will happen! He is doing well (although I credit his hard work more than mine). But the point being that I am intellectually challenged and better rewarded here at home than I would ever be at any position in Corporate America! My 16 year old self would have never imagined that my 33 year old self would be a stay at home mom. My 16 year old self would have probably thought I had sold out on our dream. She would be wrong. I am living our dream.
I look at that overweight, graying lady in the mirror and I am still proud of her. She has found a beautiful life and she is happy (when she lets herself realize it). She really needs to slow down a little bit and enjoy the moments more. Perhaps when she does that she will find time to take better care of herself (and her face will become less round and she'll have time to color the grey out of her hair).
Either way, it has been an interesting journey. Life has provided some interesting obstacles and some amazing sights along the way. Am I where I expected to be at this point in my life? Yes! I am happy and that is all I expected. However, I am going to devote this next year to showing it more often!
My Aussie friend, Em, tagged me. I am to devise an answer as to why I blog. Here it goes...
1. My own personal therapy. I have thoughts continually swirling in my head. Blogging gives them a life form and often closure. Otherwise they would continue to haunt my sleep. I occasionally try elaborating them to my husband but this tends to overwhelm him. His usual response is an incredulous, "You need to relax and shut your brain off once in awhile!". I wish I could!
2. Blogs are my support group. I have tried the local support group route. In fact, our first year AD (after diagnosis) I went to a wonderful support group. It was like going home. There were about 10-15 moms there and we really got to share life's ups and downs once a month. Then the group combined with another organization and the camaraderie went away. Most of the "regulars" faded away. (It is kind of sad because I miss hearing about their kids!) But I have found that blogging builds that same camaraderie. Plus, I get to know even more about the day to day lives of the blogging families. Best of all, I can log on at 1am if that is when I get a moment for myself!
3. Perhaps I have an addiction to the computer. I spent my previous professional life tied to a computer and this time at the keyboard takes me back to that "Look at me, I am an important corporate peon" time in my life. Maybe? Perhaps it gives me a feeling like there is more to my life than washing clothes, dishes, and kids. I know that my pulse picks up when I hear the little chime letting me know that I have received an email. I think this link to the outside world helps me feel less isolated at home. I love my kids but never in my wildest dreams did I ever expect to be a stay at home mom. I didn't think I had it in me!
4. Creating a journal of our lives. I already find myself drawn to look back over my entries of the previous months. This is perhaps my best therapy and source of motivation. Depending on my emotion of the day I can usually find a previous post that can help balance me out. These emotions are cyclical and I find that whether I need a reality check or an energy boost I can usually find an event to spur me along. Sometimes I just need a reminder about how amazing my children are and how far we have come in the autism journey.
5. I've already mentioned getting help but I also hope to help others. I am no expert...but my hope would be that our story can help others. I lurked for quite awhile at several blogs and found great strength from them. We spend so much of our time home with our challenging kids and we start to feel alone in this big bad world. It can get quite overwhelming! Blogs remind me that I am not alone! All of my cyber friends have been there and done that and I know that I can learn from each of you. I only hope to return the favor.
Our children are all so different yet so much the same. This is why I started loading some of the idiom resources I have recently made for JP. I spend so much time creating teaching materials for him and it feels sad that we just file it away. I know so many other families could use the resources as well. Unfortunately, most of our home program stuff can't be loaded on the site but I plan to share whatever I can. My motto is..."why should us families have to keep re-inventing the wheel?"
I know many families live in small communities and autism resources are minimal. That is why the Internet is my best resource. It has made the world a smaller place. It has made living in one of the US states with the worst disability services less painful. I have a few "professionals" helping us navigate the autism world but I consider the experiences of fellow special needs families to be perhaps be the best guidance out there! After all, the best advice comes from those who are there in the trenches with you!
So following the rules of the game...I have to tag 3 of my friends and ask they why they blog.
How about it ...Mom to JBG at Hoop Dee Doo and PDD, and Kal at Autism Twins . I find it fascinating how both of you both navigate life with twins! You have my respect!!!
And I'd also like to tag my friend "who laughs in the face of adversity" at For What it is worth although I think it is pretty evident why you blog. Please know that I am continually amazed at your grace in the line of fire! I can't help but ask you, "What else?" Please look both ways every time you cross the street and watch out for lightning!
JP was at his recreational therapy camp on Saturday. They were preparing to go swimming. He had finished dressing and was waiting for the others to get ready. Unfortunately he was waiting too close to the door! His toe got caught under the door when one of his peers came out of the locker room.
Here is what it looks like today.
The nail is coming off but we haven't been able to urge it along much. We tried to just lounge around and be "couch potatoes" this weekend but he continuously wanted to be up moving.
I kept asking him if it hurt. His standard response was, "No, it's happy." He wouldn't even acknowledge the hurt when we would wiggle the nail! And I know it hurt because he looked like he might pass out!
I don't know how I'm going to dress his "happy feet" tomorrow for school! Fortunately it is supposed to be in the 60s and almost all of the snow has melted.
I take a lot of pictures of the boys.
This is one thing that I have found helpful as I retrace JP's development. You see, I have pictures of just about every skill or even every breath he has taken. I know he had specific skills at 12 months...at 15 months...at 2 years. I know that T stood on his own for the first time on August 22. I know this because I have about 20 pictures chronicling the event.
Somewhere in the second year of JP's life my pictures just didn't seem to ever turn out as well. I told myself that it was the few seconds delay on the camera. I could never catch him in the moment. He was too quick! The smile was there but by the time the shutter captured the moment, the moment was gone. He is a happy guy with a beautiful smile but still today we rarely get pictures of that smile.
His pictures have him staring off to the side or making some odd facial guesture as he tries his hardest to look at the camera. It is as though he has to contort his face to make it happen. I have tried to sneak up on him for the pictures. And I must state for the record that he loves having his picture taken. He will pose for me anytime anywhere. But he can't look into the camera.
I marveled at this phenomena as I sorted through the pictures this past month. Here is a collection of eyes. See if you can pick out the eyes of the little boy with Autism. It is said that the eyes are the window to the soul and both of my little men have beautiful souls. I only regret that the oldest has such a hard time letting us peek in his window.
*T's eyes are in the rectangles with a black outline. JP's rectangles have fuzzy edges.
Conversations overhead amidst the chaos...
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MOM: JP, we have to get ready!
JP: What do we did today? Do we have a mission?
MOM: We have OT2 but we don't have speech today. Ms. Tricia is sick so Mommy planned a special mission for us! We are going to Walmart!
JP: Oh, that is a wonderful idea! Good thinking, Mommy!
(OT2= he has attended Occupation Therapy at 3 different sites. For the past 4 months we have gone to the "OT2" location but he still requires that we call it OT2. I think they will always be known as OT1, OT2 and OT3. We sometimes have to clarify our Walmart as well. There are two nearby. Our usual store is "Same Walmart" and the other one is "Different Walmart".)
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(JP wants to watch a movie)
MOM: If you help me color this picture, I might let you watch a movie.
JP: I can't. I want to catch up with my father. (What Buzz Lightyear says to the gang at the end of his Star Command movie. This is after he finds out the evil emperor (Zurg) is actually his father!)
... (couple hours later)
DAD: JP, time for your bath.
JP: I can't. I want to catch up with my mommy.
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(JP eating breakfast)
MOM: Better hurry up and eat your toast. Fred will be here soon to pick you up in the Mack Truck. (This is utter nonsense...he doesn't know Fred and Mack drives Lightning McQueen)
JP: No, Mrs. Becky will be here soon to pick me up in the school van.
MOM: Oh, you are right. I get confused. You are such a smart cookie!
JP: No, I am a couch potato!
(Since this posting in early Febrary, we have been working on various idioms. I am logging them in the "English 101" section on the bottom of my blog. In some cases I have had to create a visual to help JP. I have posted those out into cyberspace for your consumption. All images are directly off the web so I should provide credit to Google images. The way I see it, if anyone else can use them then do so! Why should we all have to reinvent the wheel?)
Okay. Just a quick note. I am crazy angry right now. I have been thinking about the little boy in Hawaii and how confused he must be after being arrested and charged with Assault. He IS ONLY 6 and he IS AUTISTIC! Tell me, who in this story should "know better" the autistic child or the school?
Earlier tonight I mentioned this story to some other families at a support group meeting. They hadn't heard about it so I told them I would email a link. As I mentioned in my earlier post, I stumbled on it while visiting my fellow blogger, MommyGuilt.
Well, I tried doing a Google search to see if there were any updates on this case. Truthfully, I didn't find much BUT I did find this!!!! The dates aren't the same and the mother names are different. I'm no investigative journalist but it appears to be two different cases. One is listed as the Ho'okena School in the city of Kailua-Kona and the other mentions a Aikahi Elementary School in Kailua. This doesn't appear to be the same story but it sure looks like a repeat occurrence in the same local area!
Suit over boy's arrest is settled for $50,000
The state will pay $50,000 to settle a lawsuit alleging an autistic boy was arrested without reasonable cause on his seventh birthday last year after he hit an educational aide at a Kailua school.
As part of the deal, the Department of Education also agreed to conduct an internal investigation to prevent similar incidents from happening.
On Nov. 8 the Aikahi Elementary School student got frustrated and upset because he could not tie his shoelaces, and began waving his arms, family attorney Eric Seitz said yesterday.
When the special-education aide intervened, the child struck her with his hand, Seitz said. The lawsuit said the child has a history of aggressive behavior, with tendencies of biting, kicking and hitting due to his condition.
There is a written plan specifically for the child so the teacher or aide can control episodes of kicking, hitting, biting and other aggressive conduct due to his disability, according to Seitz.
The boy's mother, Raina Hockenberry, sued the aide, a supervising teacher, the principal and vice principal of Aikahi Elementary, the city and the policeman who arrested the child.
The suit contended that the boy struck the aide because of his condition, that he was unreasonably and unlawfully detained and that a special-education supervisor failed to properly advise school officials.
DOE spokeswoman Sandy Goya said, "The department is reviewing its current practices and procedures for our employees in terms of the appropriate response to a child who is acting out."
She said the department will provide training for employees to consider the child's age, behavior and other factors.
Police arrived at the school Nov. 9, arrested the child for suspicion of felony assault and took him to the Kailua station, where he was released to his mother 45 minutes later.
The complaint said school officials suspended the student Nov. 10 and told his mother the school would no longer provide free and appropriate education to the child.
The $50,000 cash settlement from the department will be divided, half to Hockenberry to be used in part for attorneys' costs and fees, and half into an annuity for the child's college education, accruing to about $45,000 when the child turns 18.
The boy has transferred to another school, Seitz said. He said his client is close to settling with the Honolulu Police Department.
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Here is one of my favorite parts...
"As part of the deal, the Department of Education also agreed to conduct an internal investigation to prevent similar incidents from happening."
I hope this second family gets a lot more than a $50,000 settlement! Perhaps by handing out money to every child they arrest (rather than educate), the school district will realize it is more efficient to train their staff!
But then, if they can't learn from their mistakes how can we expect them to teach?
Well, I read my (non autism) book! But I have to say that I made a poor choice. No, the book was excellent. It was The Innocent Man by John Grisham. It just wasn't something that I needed to read right now.
Let me summarize it with the final paragraph from the book jacket.
"If you believe that in America you are innocent until proven guilty, this book will shock you. If you believe in the death penalty, this book will disturb you. If you believe the criminal justice system is fair, this book will infuriate you. "
Yeah, I don't need to be any more infuriated. Then, to add salt to the wound, the main character is mostly vulnerable to the justice system because of his own mental illness. The various people around him assume his guilt because he is "weird" and doesn't act normal. He spends a number of years on death row and is actually almost executed for a crime he didn't commit!
If that isn't horrifying enough, the reader learns about the malicious taunting he gets in prison from the guards who enjoy provoking his paranoia and delusions. They also play with his medications so that he will be quiet when they want him to be quiet and then mix them up when they want him to get belligerent (in the court room). Perhaps I internalized this story too much because of key quirks in the main character. For example, his uncanny ability to remember entire bible verses, transcripts from his case or even small details about miscellaneous events in his life. No, he isn't ever diagnosed on the spectrum but that doesn't stop me from visualizing my child in his place.
So while that story is haunting me, I decide to visit some of my friendly bloggers in cyberspace. That is where I come across Mommyguilt's Can they do this? The situation she is referring to disturbs me greatly. I won't summarize except to say that it is another place where the system is failing a child.
On the up side, I had a story swirling in my head from a post I had recently encountered at Club166, What a difference a day makes . He had a heartwarming story about a young autistic man who made "employee of the quarter" at his office. I very eagerly joined him in celebrating this victory. However, since I only recently discovered Club166, I had some catching up to do. So I followed his reference back to an earlier post that explained some of his family's wounds. What a roller coaster ride! I am warmed by the story of success for the man at work but I am a little more frantic from what his family experienced due to a "blunder" by the school district.
Stories like this make me worry. How can we ever keep up on everything that could/should/would happen to our children? How do we help them succeed and make sure that they don't miss out on the opportunities that are out there. How do we protect them from social injustice?
I can look into the innocent eyes of my 5 year old and tell myself that everyone will love him. So far, everyone does. But I have to grow up along with him and realize that the world is not as forgiving for us as we grow older. A tantrum in a toddler is almost considered cute. A tantrum in an 8 year old is not. So many of our kids become 8 year olds with the language and emotions of a toddler. They look "normal". Society expects them to act "normal". Let's face it--the are not "normal". How do we protect them from those unfair expectations?
Beyond this, I also had a fellow autism parent contact me to talk about our kids. No, not our 5 year olds. Our baby boys. She is worrying about the baby. I feel for her and I tried to put up a brave face. But what can I say? This fear will resurface over and over again. Her little guy is only 4 months old. I didn't want to tell her that she is going to continue to feel this way over and over again. It comes and it goes but every time the fear comes back bigger and stronger.
Unfortunately, the only way I get past my fears it is to tell myself to wait. I can worry about it later. I convince myself that T it too young for us to know if he will have autism. I try to focus on enjoying the moment and only succeed because I convince myself that I can worry later. The best I can figure is that JP lost his skills somewhere between 18 months and 24 months.
Well, T just turned 16 months! Ugh, my time for to worry is here. I am not going to be able to put off my fears anymore. I am going to have to live with them day in and day out. The fears will be going everywhere with me--the shower, the store, my sleep. I can't get away!
Perhaps these are the reasons I couldn't sleep last night. But I doubt that I will be getting much sleep in the months to come. Between T growing up on me and JP preparing for Kindergarten, I AM TERRIFIED!
I hope I have the strength to do everything right for my boys!
