3/30/09

So Tyler is running an somewhat unexplained fever right now. Has been since he woke up on Sunday. He has no other symptoms of illness, except Friday he had a diaper rash which I thought was strange cause the school didn't indicate on the paperwork they went home that he had diarreah (they usually tell us) and daycare didn't mention anything either. The diapers I changed were normal stools. Tyler never gets a diaper rash without diarreah. So now my mind is starting to wander.. did he somehow get a hold of gluten on Friday. You see, the week following the complete removal of gluten from his diet, he went through withdrawls, which included fever and on and off lethargy for a week! We bathed the boys together last night and are keeping Ben home with Tyler so that if he is gonna get sick then we'd rather have it be sooner rather than later, but Ben is still not showing any signs of a fever. So for my own peace of mind, I'm just trying to figure out what's going on to cause him to have a fever but no other symtoms of illness.

So let's see.. we didn't push Tyler too ahrd this weekend as he wasn't feeling well. HE's been resisting naps lately even though he's really tired.. I laid him down for a nap on Saturday, he laid down for a few minutes, would sit up and play, then lay back down. I keep a close listen as he's starting to try to get otuof his crib (yes I know he needs a big boy bed but that opens a whole new world of worry that I'm not quite ready for), so anyway, after about 30 minutes of up and down, I heard him say (heard through the monitor) "ou"... yahoo.. my boy asked to get "out" of his bed. SO of course I ran in there and got him out. On the same day he also said "uh oh" after I did so I then said it again and this time he made the proper intonation but didn't actually move his lips. Still excited that he was imitading me.

So last night after dinner, we were having a hard time getting Tyler's fever to come down so I was just snuggilng with him in the chair and we were watching signing time videos. Not only was I learning more signs but I ws able to do some hand over hand signing with Tyler's hands. Then.. something great happend.. Leah and Alex (two of the main characters) started laughing and then Tyler started laughing. IT was great! Tyler usually laughs more at objects moving or puppets or something like that but not necessarily on cue when people laugh. I've never noticed him do that before so I thought it was pretty cool.

On the down side.. that story I posted last time is still haunting me. It was like bad accident that you can't help but watch.. I couldn't help but finish reading that story once I started, I guess in hopes that it would have some sort of happy ending. Anyway, it was just was a bit discouraging, I know that there is the possibilty that things may not get better for Tyler but thinking that they may get better and then worse...well that's just hard for me process. And of course that story is a rare one, they certainly dont all end that way. But as far as Tyler has come in his short little life, the journey ahead of his is so monumental that it can at times seem impossible. We were driving around last night with the boys and TYler was playing with his orchestra toy and honestly pushed the same musical button for 45 mintues..repeatedly..over and over and over. Steve talked about how as kids they used their imaginations in the car to play games and I said well Ben is just getting his imagination and Tyler doesn't have one yet and honestly he doesn't always have reality either. Anyway..I'm just in need of some hope right now.

People are constantly giving me articles about very successful adults with autism. So I figured for those of you who read that darn story, may need a pick me hope, a little piece of hope, just like I did.. so here it is. http://www.youtube.com/watch?v=2wt1IY3ffoU Go to this link. you don't have to watch all of it (it's very long) but it's a very famous woman with autism who is presenting about autism and it's fascinating being that she has the disorder herself. She is very successful, just a bit quirky!

3/27/09 - Rally & Monster

They just announced that autism insurance rally will be on April 28th at the Capitol..more details will follow but if anyone is interested in attending,please let me know. As I mentioned in previous blogs, the bil now resides with a different committee and there is a lot of hope it will be brought to a vote this year. Below is a link that explains how a bill becomes a law...

http://www.youtube.com/watch?v=mEJL2Uuv-oQ

Ok, the following is an article/story that is going aruond my autism michigan list serv. I will warn you that if you have any emotional attachment to Tyler, this article will be extremely hard to read so certainly do not feel obligated. You may wonder then why I post it, I'm not sure I can explain it in words but I will try. When I knew Tyler had autism but he hadn't been diagnosed, many people, in trying to support me, would say, oh I'm sure he'll be fine, may be he's just a late talker, he's just independent, etc. And althuogh those were all with good intentions, it made it hard on me like no one was willing to accept what was actually going on. I'm a realist and although I hope with all my hope and might that Tyler will lead life as an independent adult, happy and healthy and with a family of his own, there is no guarantee. In fact, things can go terrible wrong for some, just as they can be miraculous for others. on Saturday, Tyler grabbed a hold of my pig tails adn pulled wiith all of his might, on Sunday, he grabbed my ears and yanked down on them, both times while he clenched his jaw and his head shook a bit. The physical pain was very minor, but the emotional pain/worry is substantial; will this side of Tyler continue, will it be more often, what will I do when he is bigger than me? And of course the please god, please don't let him hurt anyone. That's part of the reason we hired a sitter to watch him at his party or we watch him so closely in public around other kids, we are so worried he'll hurt someone. So I guess I'm attaching this article for those of you like me who are information junkies, who do not want to be surprised by anything, who wants to attack autism at full force as it is a miserable beast that has a hold of so many. So, please believe me when I say this is a very difficult read, I shed lots of tears and specifically asked Steve not to read it (as he's on the list serv as well.

The monster inside my son
For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.
By Ann Bauer
Mar. 26, 2009 |
On Feb. 14 I awaken to this headline: "Professor Beaten to Death by Autistic Son."
I scan the story while standing, my coffee forgotten. Trudy Steuernagel, a faculty member in political science at Kent State, has been murdered and her 18-year-old son, Sky, has been arrested and charged with the crime, though he is profoundly disabled and can neither speak nor understand. Sky, who likes cartoons and chicken nuggets, apparently lost control and beat his mother into a coma. He was sitting in jail when she died.
This happens to be two days after my older son's 21st birthday, which we marked behind two sets of locked steel doors. I'm exhausted and hopeless and vaguely hung over because Andrew, who has autism, also has evolved from sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.
Now, reading about this Ohio mother, there is a moment of slithering nausea and panic followed immediately by a sense of guilty relief.
I am not alone.
- - - - - - - - - - - -
Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ.
We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level -- from ages 12 to 17. Andrew aced algebra, became fluent in Spanish, played the cello in the school orchestra, and competed on weekends in tournament chess. I occasionally even referred to him as "cured."
But in the months before turning 18, Andrew grew depressed and bitter. Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4. Many of his old symptoms returned: the rocking and "stimming" (e.g., blinking rapidly at lights), the compulsion to empty bottles of liquid soap. Sometimes he would freeze, like a statue. Classic catatonia, the experts told us. We tried a series of medications, but that only made him worse.
Once during this phase, he beat me. A neighbor heard me screaming and called 911. But I blamed this on the drugs. Despite everything, my son had always been gentle and sweet. This was no twisted adolescent squirrel killer who kept a pile of carcasses under his bed.
On the day he should have graduated from high school, Andrew was instead being treated in a psychiatric ward at the Mayo Clinic. But he seemed to improve, and we were hopeful. Upon release, he was placed in a series of behavioral health centers and group homes. This is where his real education began.
He'd quit progressing in school, but now my son soaked up new information like a toddler learning to talk. Every placement in a succeedingly tougher environment gave him new skills. He shoplifted like a pro, traded his belongings for sexual favors, and dined and dashed so often some local restaurants had his picture posted in their kitchen under the words, "Don't serve this man." I told myself at least he was thinking, making his own bad choices, experiencing adult consequences. A part of me was even proud.
But he'd also quit reading, conversing, learning people's names, or keeping track of the day of the week. He ate like some gnashing beast: stuffing food into his mouth until his cheeks bulged and food dribbled out onto his clothes. And after moving to the rural group home selected by a judge because it was miles from restaurants or businesses where he could steal, Andrew morphed again, the warty monster from a Grimm fairy tale, demolishing everything in his path.
His destruction was utterly senseless yet brilliantly thorough: He submerged his computer, stereo and iPod in water; threw puzzle pieces and Styrofoam cups into the toilet and flushed them, plugging the pipes literally dozens of times a week; and urinated on every square inch of his room: bed, walls, floor, closet, everything but the ceiling and that only because he had not (yet, I suspect) figured out how.
When I asked him why he did these things he would say, eyes narrow like a night creature, "I don't like being caged."
- - - - - - - - - - - -
Then came Sept. 2, last fall. This was to be Andrew's first day of his final year in public school. He hated school -- a so-called transition program -- because it was demeaning. Lessons about how to cross streets and take buses and punch time clocks. My son had completed pre-calculus; now he was being taught how to make correct change.
But there was nowhere else for him. He'd failed to hold the two jobs my husband and I had found for him; the private job coach we hired said Andrew was the most challenging client he'd ever worked with -- right before he quit. We were financially tapped out and the state would not pay for vocational training until Andrew turned 21. Transition school was the only choice.
I'd explained all this. But when I showed up at the group home that morning, he was drinking coffee and pacing and still not dressed. I went into his room, took some clothes from the closet, handed them to him. And hinting at what he was about to do only with a small sigh, as if to say, "I've had enough," my son picked me up and threw me across the room.
I had three broken ribs and a bit of damage to my liver that made my doctor fret. Still, who among us hasn't wanted to toss our mother across the room when she's nattering on and making cheerful sounds in the morning? I dismissed it as an aberration until a couple weeks later when Andrew decked his elderly tutor, knocking her onto a concrete sidewalk and breaking her hand. He went on to attack several staff members at the group home, grope the mentally handicapped young women who attended his transition program, and finally to accost his 14-year-old sister right in front of my eyes.
It was Christmas Day. I watched him enter the room and fix his gaze on my daughter. Then he rushed her, and I screamed. My husband -- two inches shorter and 50 pounds lighter -- somehow intercepted Andrew and knocked him to the ground. After he had been escorted from our family dinner in restraints, we sat at a table heaped with food growing cold, where my elderly parents wept and my daughter shook silently. I comforted them all and after that was done -- the meal reheated and people eating -- I drank every drop of alcohol in sight, even draining the half-full wine glass my mother always left. The next morning, through a headache of steel knives and bad music, I got on the phone.
I called the man who was supposed to be my son's psychiatrist to ask for an emergency appointment. Andrew was becoming dangerous, I told the nurse, and he was going to hurt someone. But the doctor was too busy; he was on vacation. There might be an opening in late January. No one else was available, no matter how many numbers I dialed.
Secretly, as if committing a sacrilege, I searched online using keywords such as "autism" and "violence" and "murder." What I found was confusing. There were roughly a dozen recent articles about heinous acts committed by people with autism and Asperger's syndrome, but each was followed by editorials and letters written by autism advocates vigorously denying a link. There were a few studies from the '80s and '90s, but the results -- when they showed a higher rate of violent crime among people with autism -- appeared to have been quieted or dismissed.
On the other hand there were, literally, thousands of heartwarming stories about autism. A couple of the most widely read were written by me. For years I had been telling my son's story, insisting that autism is beautiful, mysterious, perhaps even evolutionarily necessary. Denying that it can also be a wild, ravaging madness, a disease of the mind and soul. It was my trademark as an essayist, but also my profound belief.
Now, despite the constant calling and late-night research, I could not accept what was happening. I could not write about it; I could not speak of it. Not even my closest friends knew what was happening inside my life.
- - - - - - - - - - - -
My husband and I were on our way to an inauguration party the night Andrew finally came apart.
It was January, a week of cold so wicked I was dressed in long underwear and wool sweaters, scarves, a parka, and two sets of gloves. It took me a long time to scramble through all the layers when my cellphone rang. But missing the call was not an option. I'd already had four panicked messages from the group home that day: Andrew's violence was escalating. They were mandated by state law to stay inside because of the weather, and he was going stir crazy, terrorizing the house. No one knew what to do.
"Yes?" I answered.
"I'm so sorry," is how the voice on the other end began.
It was Andrew's counselor, calling to describe the situation. My son was in an ambulance circling the Twin Cities, sedated and strapped down to a bed. He'd been in there for a couple of hours and the medics just kept driving; they couldn't stop because all the psych wards were full.
"Yes," I croaked again. Other than this one low word, I'd been struck mute.
They'd had no choice but to call the police, the counselor said. After dinner -- which was served in the group home at 5 o'clock, leaving long hours to kill before bed -- Andrew made a pass at a young female staff member. Petite, blond, around his age. The girl rebuffed him, reminding him probably for the 8,000th time that day about the "no touching" rule. And then he went off.
My son reportedly leapt on her -- his 260-pound body surprisingly nimble -- one hand around her throat, choking her, and the other in her mouth, pressing down, cutting off her air two different ways. It took four men to pull him off and by this time the girl had passed out.
"Is she all right?" I asked. And this mattered for so many reasons: There was the basic human one, then the legal, also the fact that my own fate hung on the answer. While lying awake earlier that week, I'd made the decision that if my own child were to kill someone I, too, would have to die.
"She's bruised," he said, "and scared."
That's when I breathed. Nothing irreversibly evil had yet been done.
My husband wanted to turn around. But I was afraid that in the quiet of our home I might sit and think about my perfect, rosy-cheeked baby and actually go insane. So instead we went to the party and, as on Christmas, I drank as if it were a task I need to accomplish. Steadily, with steel. While my husband watched over me with his worried face, I hugged people and talked and tried to participate in a game the host had devised: Obama trivia. What movie did he take Michelle to see on their first date? Which brand of computer does he use? How big are his feet?
I failed to answer a single question and wondered why everyone around me seemed to know these things. Where had I been? Through my shimmering stupor, I surveyed the crowd of happy, shining faces. People were wearing buttons, T-shirts, even necklaces that spelled out "hope." This struck me as sinister and somewhat rude. Hope was bullshit. Hope was exactly what had been lost.
In the car on the way home, I asked my husband if I had fooled everyone at the party. Was I speaking normally? Did I at any point shout or cry or whimper? He assured me I had not. But for the few moments at the end when I'd looked as if I might collapse, I'd been pale but appropriate.
"I'm sure I'm the only one who knew," he said, shifting so the seat made its cold, leather groan and taking my hand.
I thanked him and leaned back, thinking dumbly that, of course, there was one thing he didn't know: I'd been secretly stockpiling the sleeping pills my doctor prescribes like Pez. I had about 80 saved up, which would probably be enough. The ambulance was still out there, driving through the dark night on frosted roads, holding my son inside. For now I could live. But the following morning I recounted my supply, just in case.
- - - - - - - - - - - -
Back when Andrew was in junior high school, my mother had a friend whose adult son had only recently been diagnosed with autism. He'd been dysfunctional since childhood, failing at school, unable to make a friend or keep a decent job. At 35 he was still living at home, collecting carts at the local grocery store, and taking anticonvulsants (Tegretol was the unofficial treatment of that era for outbursts) to control the violent urges he'd been having for 15 years.
"You think he's better now," my mother's friend once said as we watched a young, laughing Andrew out the window, playing tag with his brother and sister in my parents' backyard. "But wait 'til he's older. Then you'll understand. "
I hated her and was furious that she wished for our downfall -- also that her dumb, psychopathic son had been given the same label as my beloved child. Autism had become oddly fashionable; my mother's friend was wealthy. Clearly she'd gone "diagnosis shopping." My son, I vowed, would be nothing like hers.
When Andrew finally landed at the county hospital, after 10 hours in the circling ambulance and another three in the E.R., I was still looking for a different answer. This wasn't autism. Surely he had a brain tumor, a seizure disorder, or a delusional condition such as schizophrenia. Maybe, on one of his crime sprees, he'd gotten ahold of some PCP.
But the psychiatrist assigned to my son said no. The MRI was clean; the EEG normal. The doctor's specialty happened to be schizophrenia, and he saw none of the signs. Street drugs would have left Andrew's body by now. This was isolation, frustration, hormonal surges, poor impulse control and hopelessness. It was adult autism, the psychiatrist told me: one awful direction it can take.
Monday, I went to see my son. He was in a bare white cell behind a steel door with a window, like Hannibal Lecter. The only thing missing was the mask. Two male nurses and Max, my 18-year-old linebacker son, walked with me into the room. Andrew was beached on a bed, his glasses the only thing on the shelf alongside. I touched his shoulder and woke him, taking his hands after he'd lifted himself to sit. "I'm here, sweetheart," I told him. "I want to help."
He looked at me with bug-eyed wonder and squeezed my hands, hard, "I might kill you," he said. That's when Max pushed his way between us and ordered me from the room. Sobbing, he wrestled his brother to the bed and held him there.
I spent Tuesday at a friend's house, as planned, in front of the TV, watching the Obamas walk and wave. Once, when someone asked why I was so quiet, I mentioned that one of my children was in the hospital, quite ill. She touched me and said something kind. I knew she was thinking of something like leukemia and I wanted to tell her I would hack off my right arm in return for something as simple as cancer. The flickering beauty of a sad, pure, too-early death sounds lovely. Instead I nodded, silent and dumb.
The one thing I held onto, through all of this, was the sudden appearance of this county psychiatrist: a small, bespectacled, Dustin Hoffman-ish fellow who’d spent years on a kibbutz before going to medical school in middle age. I found him magnetic, I trusted him. He became my talisman, my Obama, the only reason to hope. It wasn't that he had any magic solutions -- I've learned by now that no one does -- but he was openly upset, diagnosing Andrew simply as "someone in pain."
We sat in the doctor's lounge and he gave me a slice of banana bread to eat while he kneaded his forehead and read his notes. When he asked me what I wanted him to do, I told him: Whatever it takes to make my son stop. The threat of harm to my son's body was superseded by black stains on his soul. The doctor agreed, but he had made a list in ascending order of risk: Ativan, high-dose Prozac, Depakote, electroshock, Clozaril, Riluzole. A drug called Lupron.
I reached for my single semester of Latin. "Lupron? You want to take the werewolf out of him?"
"Exactly," said the Israeli. "But it's our last resort."
There were days spent in court, one swimming into the next, like a series of nightmares. Because my son was vulnerable, nothing could be done without a judge's order. Exhausted after this process, my husband and I went to Chicago and spent three days walking in icy sunlight, eating in no-name diners, going to sleep at 9 p.m. By the time we returned, Andrew had been given buckets full of dangerous, doping drugs and two sessions of ECT.
When we arrived at the hospital, he shuffled sleepily out of his now-unlocked room. We gave him money to order pizza (it turns out Domino's delivers to the psych ward), a sketchbook and pastels, two books. He could have nothing sharp, no cords. This ruled out a CD player, laptop, or ballpoint pen.
I asked tentatively if he remembered what he had done and suddenly he began to cry, tears running down his giant, furry face, jeweling his beard.
"Beware," he said through ragged breaths. "I'm bad now, I can feel it. I can't help the things I do."
- - - - - - - - - - - -
Whether there is a definitive link between autism and violence -- between Trudy Steuernagel' s situation and mine -- I cannot say.
And even if it exists, the cause is not clear. Our adult son's behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense. It could be the result (as some scientists have postulated) of excess testosterone on the autistic brain. It could simply be wild coincidence that I ran across this particular story during a time when I was looking for answers. Any of these is possible. I just don't know.
The chairman of Trudy Steuernagel' s department rose at her memorial service to proclaim, "Autism doesn't equal violence." And this probably is mathematically correct: Autism does not always equal violence. But I do believe there may be a tragic, blameless relationship. Neither Sky nor Andrew means to be murderous -- of this I am sure -- but their circumstances, neurology, size and age combine to create the perfect storm.
It is warmer, finally. Outside my window ice is melting off skeletal trees. I sit in the pale morning light, drinking tepid coffee and reading about this woman whom I suspect I would have liked. A fellow academic and writer, Steuernagel, too, insisted on finding beauty in autism. Her legacy includes an editorial about Sky's loving nature and relevance, how he led her through life along "a trail of sparkles."
Mine, I decide, must be in part to break the silence about autism's darker side. We cannot solve this problem by hiding it, the way handicapped children themselves used to be tucked away in cellars. In order to help the young men who endure this rage, someone has to be willing to tell the truth.
So here it is.

3/26/09

1 week from today, April 2, will be World Autism Awareness Day. The United Nations General Assembly adopted resolution 62/139 in 2007 and it is one of only three official disease-specific United Nations Days. Yahoo.. I think that's pretty impressive. So please help us spread awareness about autism and make the world a little bit more understanding of our boy. I ask that everyone that reads this, please tell someone one fact about autism on autism awareness day. this blog is filled with facts so I'm not gonna bore you with a lot of details but here's a staggering statistic that a lot of people don't realize 1 out of 94 boys in the US, are diagnosed with autism. YIKES. A lot of people also don't realize that many affected by autism cannot speak. Someone was shocked the other day to hear that Tyler can't talk, even though this person knew a little about autism. So please help educate someone, anyway, about autism. If you want any other info/facts/tips, etc. please let me know cause I'm happy to share the knowledge. You could also talk about insurance bills and that the one in Michigan just went to a new committee withs ome modifications for the better and there is a lot of hope this year that it may be sent for a vote, new mexico just passed insurance, yeah. And although this may be too much to ask for, why stop at doing this just one day. April is autism awareness month, why not share information every day in April. Send an email to friends, tell a neighbor, talk about Tyler, whatever, just start talking :) My co-worker and I will once again be wearing t-shirts every friday of the month of april to help create awareness. (there are many many really cook shirts on cafepress.com) We made ours last year but they didn't last long so we ordered nicer onces this year and that way we can wear them for other functions too such as runs, walks, rally's. Mine says "my son has autism, see the potential" and her's just says "autism - See the potential" I love this saying.. Tyler has sooooooooooooooooooooooooooooooooooooooooo much potential and with early diagnosis and intensive intervention, the sky is the limit for our guy. Ok so now I'm getting a bit joked up cause I just thought about something... see next paragraph please...

Tyler has a backpack for school that has a folder in it that he carries back in forth which includes his daily actvities at school as well as any informatino the school wants to give us or anything we need to fill out, etc. So last night after we put the boys to bed, I sat down on the couch to read a handout. It was from the gym teacher (2 pages) I looked at the first sentence or two and then turned to see what was on the next page and I saw a special olympics symbol in the upper left hand corner and I started to cry. I couldn't even tell Steve what was wrong at the point cause I really didn't know what was wrong. I'm not embarassed of Tyler or his conditino and I never have been. It's not a shock to me that he is disabled, I've known for a long time, in fact i was the one trying to convince others that something was wrong. So why that symbol bothered me, I don't know. I just never thought my son would be in any sort of activity that would be sponsored by the special olympics.. it never dawned on me.. until last night. Dont' get me wrong, I think the organization is great and it's purpose and all of those things are fine and I'd be proud of Tyler to be a part of it all.. It was just really hard to see on paper.

Ok so I'll move on to something happier, the boys were fantastic last night. We got to go outside since it was nice out (see photo from Steve's phone, Tyler was really intersted in Ben swinging and they both were laughing, ahhh I love seeing them be like normal brothers. Playing on swings makes it really easy to work on signs with both ben and tyler. So we worked on the sign for swing and more swing and ball since we also played with a ball. And we worked on these with Ben too as we are trying to encourage Ben to sign so he can understand Tyler and this may help them bond a little. I don't want to push him though so we try to make it really fun when we teach him signs. Anyway, we are really hoping that this is our summer of fun. We both agreed that we think it will be possible this year to go in the backyard with just on parent, we've never been able to do that before. Still probably can't go in the front yard since the road is so close and Tyler isn't necessarily afraid of the road yet (this comes much later in kids with autism)but being able to have just one parent outside will be really really helpful for the whole family. Clifford also enjoyed it as we were able to give him a little attention which he desperately needs.

I also ask that anyone that plays with Tyler, talks to Tyler, etc. take opportunities to make Tyler sign for something. He won't sign if we all anticipate his needs before he communicates them to us. Here are some examples, Tyler and I were reading a book and the book fell off our laps, instead of picking it up, I said, what do you want, he then signed book. Same with the books he can't quite get off the shelf I use that as an opportunity to say, oh, do you need help? He'll sign for help, and then I say ok, what do you want as I reach for the book and he'll sign book. It's easy to know what he wants as you see him struggle trying to get one book out so I cuold easily grab that book and hand it to him w/o him asking for it, but I don't, I use it as a learning opportunity for him and a chance to enhance his communication skills and social interaction. Another example is when he wants down from the table, He grabs my hand and throws it down, I say, oh, are you all done? And then he signs all done? Now...I'm actually prompting him to sign all done, the goal would be for him to sign all done without me saying it but we'll get there.. he also has his all done sign upside down right now so we need to get that cleaned up first. We are all working on new signs from the new signing time video... some of them are really fun like zebra and others are just weird like grass.. doesn't make sense to us.

Just wanna touch again on how much we think proper behaviorial reinforcements make a world of difference to Tyler. I think it's why we don't have a tantruming miserable kid on our hand. Example: We were outside just befoer bedtime and needed to come inside. Knowing this would be hard to get the boys in from outside, I put in a signing time video to play when we got in, I gave the boys a 5 minute warning, a 1 minute warning and then a 5 second count back (will talk more about this later) for Tyler. Ben came in no problem, such a good boy, and Tyler started to wimper and then cry. once Tyler was in the door (we also work on a route of taking off our shoes and coat in a certain area each time we come in the house)I grabbed his hand (he's crying) and walked him to the table. I did not look at him, i did not address the fact that he was crying, I didn't do anything but do what I had asked him to do which was go to the table and take off our shoes in coats. However, a video was playing in the background (started before he got upset, starting after would be a big no no) which I knew would help with the transition. He never resisted walking, sitting, or taking off any of his gear. once he stopped crying I told him I was going to go get his milk and he was fine. So in that example, we put many supports in place including having an activity inside that is rewarding (video), multiple warnings that we were going to be changing activities. But we kept our expectations the same.. we were going inside when we said we were and we were going to walk to the table to take off our shoes and coats and that's what happend. We just helped Tyler with the transition, he got upset, sure, but normal kids do too, it's hard to come in from outdoors when you are having fun. In the past, Tyler would have banged his head, kicked up his feet refusing to walk, etc. He didn't. He got through it, just a little upset. So that is my pitch for the day of why behaviorial therapy and living it on a daily basis really really makes our life so much easier, even if it seems a bit rigid.

Ok, I think I've rambled enough for teh day.. 1 week, autism awareness day..don't forget!

3/23/09

We had a few exciting things happen over the weekend. Attached is a video that shows Ben and Tyler playing together! I kind of caught it at the end so Tyler wasn't nearly as excited as he was when they first started playing it sort of looks like Ben is antognizing Tyler but I promise they were having fun and you can hear Tyler laughing. I recently went through and put batteries in a lot of the toys that hadn't had them for a while. One of them was a dog that Tyler loves. When you push his foot, he barks. Anyway, Tyler still needs someone to push the button for him and since Ben also wanted to play it was a perfect opportunity for me to get them to play together. It was great too cause as soon as Tyler responded to Ben and started giggling and running, Ben was also super excite. Gives me lots of hope for the future... the more we teach Tyler normal social skills, the more Ben is gonna want to play with him and they will reinforce eachother :)


Tyler and I were playing his room another time and went to his crib and kind of threw my hand up. In his crib was a bear and that dog. So I said do you want the bear and signed bear, and then he signed for dog (without being prompted!!!!) yeah! So I obviously gave him the dog. THat was very exciting for me.

We also worked on our "shhhh" sound.. Tickle me elmo was another toy that now has batteries and hasn't for a while. So he's in love with it again and wants me to push Elmo's belly for him. He is happy to sign go but I feel like he has mastered that sign and for the signs he's mastered, I'd realy like to start working on sounds with the signs...so for Elmo we worked on "push".. as I know he can make the "shhh" sound.. it's hard because you have to balance between rewarding the sign (cause that's how he talks) but also holding out for the sounds, you don't want to put the sign on exinction, i.e. signing go no longer gets him what he wants so he stops signing go. Anyway, I'm getting too detailed here... he ended up saying "shhhhh""..... yahoo.. We do the same thing with his bike since the bike is very reinforcing for him and he can't quite reach the petals to do it all himself, he signs go when we stop so we'll push again, we hold out for a sound, any sound at first... but there are many other activities that we continue to reinforce that "go" sign to make sure he continues to use it to communicate with us.

Oh Ben voluntarily told me he loved Tyler the other day, yeah! He said I love miss karen (we were on our way to daycare) so much and I love mommy and I love Ty Ty and I love daddy...aweeee.....

Grandma had fun playing with the boys this weekend and she made some copy of our sign language flash cards so she could start practicing signs at home. Tyler got 3 new signing time videos for his birthday so we are all trying to learn the new signs and work with him on them. Dad printed otu some checklists for us so we can start checking off and tracking what TYler's has learned.. I am gonna separate the cards into mastered, acquired(needs prompting) and then new so that I can do some table time with TYler and make sure I'm using the appropriate amount of new cards with the mastered cards. Since Elmo is rewarding, thinking about using him or the dog as the reinforcer once Tyler goes through a couple of cards. We'll see..hoping to get that all set up and begin this weekend and maybe dad and ben can play u pstairs. Ty seems to be picking up signs fast so I want to continue the momentum and make sure he's picking up new ones and continues to keep the ones he knows as mastered signs.

3/18/09

So we are in teh process of trying to re-organize our house and the boys rooms. We want to transition Ben's room from an office/spare room (that contains a crib) into a little personal haven for Ben compelte with a big boy ben and lots of his dinosaur toys. We've recently mvoed Tyler's room around as well to better accomodate some playtime in there. WE are trying to clean out some of the baby toys we still have and make room for some of their new big boy toys. Our downstairs is in such chaos right now as we are trying to make all these transitions. Hopefully we'll have it all in order soon as it makes it hard to work with TYler on anything for al ong period of time since he has easy access to so many other toys.

School is going great for Tyler this week. Steve got some feedback today that they are so impressed with his gross motor and imitation skills, etc. that they are really working on his speech. They feel that he's on the verge of talking, he's been babbling a lot lately and I think now that he's gotten quite a few signs down, I think he's transitioning to trying to talk now. Ben also wants to go to school, we talk to him about having to go on the potty before he can go to school, he's starting to work harder at this at home and at daycare.And.....daycare came up with a reward system there for getting Ben to eat new foods so this week he ate a whole serving of corn and a whole serving of peas.. yeah ben! Thepoor little guy won't have nearly the belly troubles if he'd just eat a better balanced diet.

Happy Birthday Ben & Tyler

The birthday party went off without a hitch :) I'm so glad we found a way to incorporate both boys into a party this year. I'll post birthday picturse as soon as I get them downloaded.

Ben got a t-rex and a triceratops from autn susie for his birthday and Tyler really likes the t-rex. The video attached is of Tyler playing with the t-rex :)

sorry this post will be short, I"ll write more tomorrow and hopefully have some pictures too!

HAPPY BIRTHDAY BOYS!

3/12/09

Tyler is eating like a champ :) We've discovered a new way to make pizza for him so that we don't have to pay a fortune buying the frozen ones he can have. We take his Tapioca Light bread and cover it with GFCF Pizza sauce and then we slice up turkey pepperoni into little pieces and last night I shreded and chopped some carrots as well and we put that all in the oven for about 5 minutes. I made 4 pieces last night for dinner so he could eat 2 pieces and then I could pack the other 2 for his lunch today at school. Well he ate 3 pieces, plus his applesauce and almost 2 cookies! :)


Also, got some good news on the insurance front, received the email below, this morning.

Thanks to all of you across Michigan for all you do, whether it is writing, calling or meeting with your Reps and Senators, spreading awareness about the need for autism insurance legislation, or enlisting the help of your friends and family for our grassroots effort!

The month of March finds us with our insurance bills reintroduced in the House and soon to be reintroduced in the Senate. Thanks to Rep. Ball and Rep. Angerer. You will find that the bill introduced by Kathy Angerer closes loopholes that insurance companies might try to wiggle through to deny us coverage once these laws pass. See the language of the bill: HB4476

MOST IMPORTANT NEWS:
Senator Tupac Hunter reintroduced the bill in the Senate Tuesday: SB359 The bill was immediately referred to the committee on Economic Development and Regulatory Reform (click here to find committee members) chaired by Senator Sanborn. On this committee are Senators Thomas (a co-sponsor), Tupac Hunter, Randy Richardville (a friend to the autism community), and Gilda Jacobs (also a friend to the autism community). This is huge news because last year the bills were stalled in the Health Policy Committee chaired by Senator George.

THIS GIVES US GREAT HOPE FOR GETTING THESE BILLS TO THE HOUSE AND SENATE FLOORS THIS YEAR!!!!

3/9/09

Yeah..this is Tyler's happy face and for good reason...things were finally back to normal this past weekend, woo hoo. Grandma came down for a visit which was really nice. Whenever grandma is around, I get a lot of good one on one time with Tyler. We worked a lot on signs this weekend for animals, objects, help, all done, etc. Tyler is also back to eating like normal, although Ben has a bit to go in that category. I wonder what it would be like to have kids that like to eat! Speaking of eating....

At the boys birthday party, I'm planning to have all GFCF food and I'm super excited cause I made GFCF cupcakes this weekend and they were fantastic! I also made GFCF ranch dip for veggies and it was also really good, although not quite as good as the cupcakes of course. I'm really looking forward to the boys party this year. The first birthday was tough for many reasons, last year was good because we just had a small party for Ben and we had Tyler at a babysitter's house so that he didnt' have to deal with all the chaos in our house. So this year I feel like I'm finally meeting the needs of both the kids and allowing them both to participate and celebrate their birthdays in a way that will work for both of them. We worked realyl hard to find somewhere that would have entertainment for Tyler, that woudln't seclude us to a room with chairs w/o anything for him to do during present opening (we do not force Tyler to sit and open presents) and somewhere that is not open to the public during birthday parties. Luckily we found somewhere in Tecumseh that could accomodate all those needs. They were open to the reasons we did not want their food and allowed us to bring in our own food to accommodaet Tyler. We don't really expect Tyler to eat much of the food (he wasn't so fond of the cupcakes, however, being able to control the environment, which includes the food on people's/kids hands, will allow us to relax and enjoy the event worry free. we also hired a sitter to chase Tyler around and watch him for signs of frustration, etc. so that we could be there for Ben too. I'm just thrilled with the way it's all coming together as it's so important to me that both boys get what they need/want for their birthdays!

we took grandma out to eat on Sunday.. I think we've gotten her sick twice while this winter and it had been a while since she'd stayed with us. The bo ys were fantastic! Our favorite table was open and it accomodates our needs very well.. Both Ben and Tyler did great. In fact, Tyler had asked to get a down a few times (he grabs our hand and throws it towards the ground essentially) and we told him we had to stay and we'd give him something new to play with or interact with him in a new way to keep him content. Anyway, he was staying so well regulated, I asked Dad to let me push him a bit. So we were actually ready to leave before we left. I know this may seem weird/or mean to some of you, but essentially I wanted to push Tyler just past his point of comfort before we left.. he did great with this.. even when putting his coat on I kept saying wait, wait.. and then said ok we'll go in 20 seconds and counted. This all will teach him coping mechanisms when he's in a situation he isnt' fond of and it will also teach him to sit for longer periods of time which is very hard for him. it's so nice to be able to go out as a famiy and know that Tyler can stay regulated through a whole meal and usually he's ready to go before we are so pushing him just a little bit more here and a little bit more there, will help extend those periods of time while teaching him that we will eventually leave and everything is going to be ok if we stay just a little longer. Oh...he did so great, we were all very produ of him and ben!

That's about all. Monday's tend to be long days for us as every other week we have a parent support group at Ty's school. It's great for Ben though because Ben gets to "got to school" just like TY. They have babysitting available and the kids get to play in one of the classrooms so they enjoy it. We just get home pretty late and it makes for a long day.

3/3/09

Tyler had a good first day back at school with the exception of his poor booty, they all felt just as bad for him as we do but said the singing really helped. I love the relationship we have with them. I had sent them an email in the mornign letting them know that he had a very sore bottom and to make sure to use the cream we sent in for him and to sing to him when you change his diaper as it helps. got a message back later in the afternoon taht the singing definetly helped. I just love how responsive they are to all of my communication.

I did remember a few of the things I forgot to mention yesterday. Someone in our family has been sick literally since the first of the year and it's been a very long time since we've all gotten out in public as a family. Ben still has a cough and Tyler still has an occasional runny nose and diarreah but in general, they are both on the road to recovery and acting normal so we decided to go out to eat as a family on Saturday. We try to go out to eat before the normal dinner hour for other people so that we aren't as disturbing. we found a local restaurant recently that has the pefect table/booth set up to accomodate all our. I'm sure people think we are loony with all teh stuff I haul around. We had a full recycleable grocery size bag as well as Steve's computer bag. We got a bit of a late start cause Tyler napped late.. we were approaching the early dinner hour so it was bit busier than usually especially towards the end. Tyler was pretty restless right away. We had brought numerous fun toys and books for him. We try to use all these things to keep him happy while we wait for our food. We also use this time to give him his dinner so that by the time our dinner comes, Tyler has eaten and gotten lots of attention so that he can watch a video while we eat. I say "usually" quite freely as I think we've only went out to eat maybe 2 times in the last 3 - 4 months with the boys and this was our third attempt using the laptop to watch videos. Anyway, Tyler was overly anxious and we had worked through our grocery bag of toys before dinner was ready so we got the laptop out... this kept him happy for about 5 minutes while we ate and then we revisited each of the toys again. All and all it was pretty successful everyone stayed happy and content. Ben was happy coloring and playing his leapster. Mom and dad had a beer! woo hoo.

Oh gosh, sorry there was a point. The owner and waitresses know that Tyler has autism and that's why we bring his own food and laptop, toys galore, etc. but obviously no one else really does. Towards the end fo the meal when it was getting busier, one family walked in the front door and as they were walking by, the dad made a comment about bringing a laptop into the restaurant. I quickly piped up and said, he has autism, it's very difficult for him to sit still, especially in a new and busy environment, the video helps keep him calm so we can have dinner out like every other family. He just said "oh" and walked away. I have no hesitation about telling anyone and everyone why we do what we do. In fact, I wish they could witness how it would go the other way and ask them if they have a preference?, i.e. Tyler without toys or video and just expected to sit still and color quietly. HA!! They'd kick us out! But it was so very nice to be able to get out as a family, finally, so for our sanity, I say, the rest of the world can kiss my ass if they don't like us having a laptop at the table!

On another note, we are looking forward to Ben getting to an age where he can start attending Sibling Workshops which are support groups for siblings of kids with autism. Ben has been outwardly telling us that he does not love Ty-Ty. He'll say, I love you so much mommmy, and i love daddy, but not Ty-Ty. I try to not draw too much attention to or tell him it's wrong, etc. I just tell him that Tyler loves him very much and I try to find ways to get Ben to see the good in Tyler, i.e. as I wrote yesterday about Tyler helping him with his letters on the laptop. I also spoke extensively with Steve about making sure we are conscience of the way we are treating Ben and our expectations of him vs. Tyler and what Ben witnesses our expectations to be, i.e. we have spent 2 years working on Tyler's eating skills and getting him to try new food and use utensils, etc. It's hard for Ben to understand why it's not ok if he occasinoally wants mamma to feed him a bite of food too. Last night I asked Ben what chair he wanted to sit in at the table (to try to make it funa nd his choice) and he pointed to the small table and said I want to sit there with mommy. I said, ok, can Ty Ty sit with us and he said yeah. Woo hoo. So I sat next to Ben and we broke all the typical Tyler rules, i.e. Tyler was able to come and go as he pleased from the table. Mostly he'd just go get a new toy and I'd grab the toy once he got close and make him "sit right" before he could play with it. For the most of dinner I paid attention to Ben, gave him lots of hugs and kisses, we watched one of his fav videos and kidn of just let Tyler do his thing. I talked to Steve later that this may be a good idea to do once a week. We spend so much time working with TYler at the table that if we maybe once in a while let Ben be the focus of dinner and let everything be his choice, we may be able to get him tot ry do eat and do new things and hopefully this will prevent some of the resentment he must feel towards Tyler. It's all a work in progress.. I found myself being short with Ben about 3 times last night and it was mostly during times that Tyler was melting down. I guess the first step is being aware that I did it, I apologized for snapping at him and now I'm gonnna really try hard not to let it happen. One of the times I was changing TY's diarreah diaper which is really tough cause he's upset cause it hurts, and has his hands everywhere and is arching his back and you try to put cream on and well it's just stressful and then there is Ben in your ear, saying mommy, mommmy, mommmy.. so I snapped at him and said, can mommmy please just have a minute to change this diaper. I did the same thing again when Tyler was upset when I got him otu of the tub and had to put cream on his bottom and Ben was having fun playign with him and I coudn't play with him until Tyler was dressed, etc. I feel like I"m always telling Ben "one minute"...

Sorry this is a long post... it's gonna get longer. I've been feeling paticularly guilty lately that we aren't doing enough for Tyler. Maybe because he's been in school now for a few months and we are kind of at a resting poitn or maybe cause he's missed so much school with breaks and illnesses, we've definetly scaled back the work we were doing at home since I'm not home with him those couple of days like I was during the study. Anyway, I feel like there is more we could do if only time nad money were not an obstacle and it had me down a little yesterday. Well yesterday after picking up Ty from school and dropping him at daycare, I went to the grocery store. I ran into a relative of a friend at the store who I hadn't seen since the boys were a few months old. She asked how things were going. I kind of told her the very summarized version of the last 3 years... she looked at me in amazement everytime i told her something new. It was kind of nice. In the world of autism, you surround yourself with people like yourself, fighting for your child's life essentially and those people are literally doing everything they can and more to help and well you kind of get used to it, it becomes the normal way of life and then seems like you aren't doing enough. It was refreshing to see my life through the eyes of an outsider as she was amazed by all we are doing and well, it just gave me a bit of peace yesterday.

So Steve and I had a long talk last night about maybe we are just a little too content right now. I am hoping that all the illness is behind us and we can start moving forward again with stuff at home. I'm gonna come up with plans for Tyler to move forward which will include new daily schedules, new play routines, new peer routines, etc. We also will be workign intensely with Steve and his mom on sign language. We are gonna get Ty more signing time videos for his bday as they are really good learnign tools for all of us and Ben likes htem too. We are gonna try to get more table time with Tyler as well and some flash cards so we can start diong more typical verbal behavior like therapy at home. Wed night is supposed to be family night where we are all together enjoying life and relaxing. I told Steve I really want this to be Ben fun night and Tyler one on one night. So Steve and I can alternate every other Wed with ben and with Tyler. Ben gets fun time and Tyler gets that intense one on one time which is so much different than we are all together. We need to act now.. he's almost 3 and we gotta push forward and do all we can at home since we can't afford much more outside help at this point. Tyler is so smart and we are lucky he learns quickly... last night we were looking at his book and he opinted to the sheep, I said sheep, and he looked at me wanting me to sigh sheep (he tries to sign it as well) and then he goes to his animal farm magnet thing and grabs the sheeps back end (it's two pieces, and he didnt' even grab the head) and brings it over and I said, yes, that's a sheep. Then he goes and grabs his animal puzzle and pulls out the sheep piece and I said yes, that's a sheep too. The cross generaliztion between pictuers and objects is fantastic! He's a fast learner. Ok brings me to another story (anyone tired of reading yet?)

I finally was able to go out to dinner with my guardian angel Amy a week ago. I've only actually met her once believe it orn ot and it was in a larger group of all new people to me. Anyway, it was great to get together with her and hear her story as she's always just helped me with mine. I had commented at one point at how many parents are so angry at autism and the situation and I said I felt lucky that Tyler had us for parents and we are fighting for him and his quality of life. BUt I also agreed that we were lucky. we always knew there was something wrong with Tyler, he never had skills and lost them, we've always been fighting for him. Many many parents have chidlren with the regressive form of autism, and that is Amy's story. Her son was fine at 18 months, saying mommy and playing and laughing and responding to his name. Within 3 months of his vaccinations, he was gone. Lost all words, was in the corner, was not responding to his name. That almost made me cry to hear her story. I CANNOT imagine having all of that and then losing it so quickly and how painful that must be. I thought about how much I adore Ben and everything that he is and what I would do if I suddently lost him 3 months from now. I'd be angry too.. I don't know if I could let go of that anger cause those parent got months and months and months of time with their normal child and had dreams and plans for them and suddently that is ripped away. Anyway, I think there is a difference. And although the kids that have the regressive form of autism seem to respond better to treatment, especially biomedical treatment, I'm glad Tyler has always had it and I hadn't endured the pain of losing him. So to that I say god bless all those parents for dealing with what they had to do deal with. did I tell you that Amy was pregnant when she got her son's diagnosis... just heart breaking. She's definetly a mother warrior and one of the most influential people who have become part of our journey.

Ok, sorry for the long post!

3/2/09

Ok, everyone cross your fingers that we are through the worst of winter. Since Christmas my family has had the norovirus, cold, flu, bronchitis, and now ear infections. That is a heck of a lot! Steve's doc told him it takse a long time for an immune system to recovery from the norovirus so that must be why our poor kids have had to suffer so much in the past couple of months. Until now, Tyler hasn't had to be on antibiotics since we started biomedical treatments almost a year and half ago. But in the past 3 weeks, he's been on antiobiotics twice and it's doing a number on his gut. The poor boy has pretty bad diarreah right now which is causing his booty to be quite raw. I dread that we still have 5 more days of antibiotics to go before we get to end this miserable cycle. I really hope that he doesn't have to go on antiobiotics again for another year or even longer.

I can't believe it's already March and the boys turn 3 this month. My goodness how time flies. I wish I could say it's been a great 3 years, but as most of you know, it's been tough. From trying to get pregnant to now, it's not been an easy road. Speaking of which.. Fox 2 news detroit ran autism specials all last week. I've spoken about Stephanie Harlan and her boy Justin a few times in the blog. They did a video highlight of them on the news. Finally, you all get to see a video of Justin who used to be just like Tyler and look at him now.. be patient..the video takes a while to load.

http://www.myfoxdetroit.com/dpp/health/autism_coverage/Family_Works_to_Reverse_Autism_Diagnosis


So we've finally discovered something Ben needs Tyler's help with and I'm trying to use it to oru advantage. Ben has become interested in the Thomas the Train laptop game that we have, however, he does not know his alphabet or numbers as well as Tyler. So whenever Ben says, "mommy, can you help me?" I say, let's ask Tyler for help so I'll give the laptop to Tyler and tell him what letter, etc. to push and he does and then I give it back to Ben and we say "thanks Tyler".. I'm hoping to take this one step further and have Ben take the laptop to Tyler and ask Tyler to push the appropriate letter.. need to work on this fast before Ben knows them all and doesn't need Tyler.

As for Tyler, he's finally going back to school this week after being off for 2 weeks from being sick and mid winter break. I'm really hoping we can start moving forward on progress. We've worked with him while he's been off school so hopefully he hasn't lost too many of his skills. He's starting to ask for "help" which is really great and he also started to sign all done. Daycare is working with the kids on learning sign language too so that they can work with Tyler, My aunt is also working with her family and daycare to learn sign language, she got the signing time videos (they are wonderful videos and make learning so fun for kids.

I'm sure there was more I wanted to say, but I can't seem to remember the mental list I had made so I'll end for it for now.