Bad Night-My fault? School?

Bedtime last night was horrible. It started out ok. I got home and he was talking to the computer. I worked in the garage, going through old toys and clothes-what gets donated, what gets tossed. He went downstairs without a problem. Was a bit hyper during Thomas, but not in a bad mood.

Then bedtime.

Oy.

He kept asking to go upstairs, screaming when I reminded him that it was bedtime. I could tell he was exhausted, poor baby. Mondays are especially tough on him and Sunday night, we left him to sleep in his own room, in his own bed. He woke up about midnight and seemed to be chatting to himself happily. We moved him back to our room and finished out the night, not too bad. When I dropped him off at school, he didn't want to go initially, but when we got to the classroom, he said he wanted to stay. One of the behaviorists, who had worked with him a lot in ABA, was one of the classroom aides, along with the two other aides (one of which I knew, but the other I did not, which doesn't mean much, I only drop him off on Mondays). The day seemed to go well. He had OT, a change it's usually on Thursday, and one moving company came by to estimate the upcoming move-another change. Mr. said Monster didn't want to go to the beach to play airplanes, which is odd.

All-in-all, not that out of the ordinary.

But bedtime, yikes! Mr and I both had to hold him down to keep him from either biting his own hands, or us. We both got pinched several times, I got it on the underside of my arm (ouch!). Monster was manaical. He was alternating trying to play and laugh with a screaming mimi fit. Song didn't do it, speaking calmly didn't do it, in fact that seemed to set him off more. Finally, I had him in a body hug and told him Goldilocks and the three bears (mommy style). He fell asleep between the too-soft mama-bear chair and the broken baby-bear chair. Mr. fell asleep during the porridge portion.

Total bedtime, 1 1/2 hours of wrestling.

Total sleeptime: 7 hours.

Monster woke at 4:30. Mr tried to get him back to sleep. I went down about an hour later (Monster actually stole my covers and kicked me out of bed) to see if I could help, but Monster was up and forcing me to hold to my promise of the night before "First sleep then up the stairs". He did his portion-sleep, now I had to hold to mine-up the stairs. Mr went up so I could try and catch a few more hours of sleep (I had gotten to bed about 1:30 after playing in the garage some more), but I could hear Monster starting to tantrum again. Very picky about how everything was suppose to be. I couldn't sleep with that, so I sent Mr. down for sleep and stayed with Monster, who settled down with Mommy around. I was able to cat nap for a few hours while he alternated playing on the computer and on his bicycle (a doohicky that connects to the TV). He was chatty, informing me he was saving pumas, armidillos and the like, cute and charming.

Finally, time came to get him ready for school, albeit a wee bit behind schedule since I was dragging so badly. We got to school and he was still fairly riled up. His favorite computer was taken. Sigh, at least he wanted to stay which means Mr can get things done.

I've been trying to think of the cause of this behavior. My initial thought was I kept telling different people how well he was doing, so Murphy's law kicked in to knock me back. On the logical side, it could be the gluten we pulled from his diet working its way out. It could be he senses the anxiety and excitement Mr and I have about the move. We haven't told him much, just that we are going on an adventure and he would be going to a new school, but he knows something's up. It could be the new schedule at school-it's ESY now and it doesn't seem to be very structured. They have the schedules up but haven't populated them with the student's icons. Monster looked a bit baffled and then decided he gets to do what he wants (yikes! Poor teachers). It could be having his old behaviorist in the room, and having to share him. It could be because he woke up in a different room without mom or dad on Sunday night.

The list is endless. More complicated than my blurry brain can deal with today. Mr is also a bit concerned about school right now, but he has so much to do. Losing that 3 hours everyday would make it tough for him to get what needs done, done. So we are taking a wait and see approach. Monster is going to have to do without school for a considerable period as it is, while we move and settle in, I don't want him to miss even more now.

Damn you, Murphy!

The Never-ending Wait

As we prepare for our move, the wait is really getting to me. I want to get on the road, to start the next journey. Most of my trepidation centers around leaving family, but even in that I look forward to the distance from the drama. My mother is very hurt and upset that we are leaving the west coast yet again. My head knows that this is because she cannot visit us after we move, indeed to do financial and health related issues, she cannot visit us where we currently live, but I know in her heart she longs to be in the Bay area. She has always loved San Francisco and if she could not live here herself, she could live here through us. Rationally, she knows this move is the best for us. I doubt she realizes how perfect of a fit it possibly is. Now that she knows it is definite, her response to remind me of how alone I will be out there-with no friends or family. Three days ago, she was comforting me on how we would do well. Today, she wanted to fill me with fear of what is to come. Oh well, this is not the first time we've danced this dance together. For self-centered reasons, we've always done what we thought was best for our little family-first just Mr and I and now with Monster. We've always walked our own path. Rarely doing what is expected or traditional. Why should this next phase be any different?

I harbor no illusions that my new job will be a cake walk. Indeed, I don't want it to be. I relish the possibility to start fresh, in a place that I already feel is home doing what I know, in my more arrogant and conceited moments, I'm good at. That old feeling of ambition has reared its head again in my soul. Those feelings that were, as I refer to them, pre-autism. The desire to show others what I know, to push my mind and knowledge to the limit to expand it. To solve problems, to investigate the truth-to find out what really happened; how things really work and are made, and why the break. I wonder if I'm setting myself up again-the way I set myself up where I currently (for 4 more days) work. I find myself reflecting again, on what could have been, what may have been, had Monster turned out to "normal".

I find myself almost grateful that he has the challenges he has, though. Not that I wish these struggles, either his or Mr and mine, on anyone. I don't. But because I know that I would have become a person obsessed with my own fame and success-as much as happens in my line of work-or at least my delusion of it. I would have eagerly sacrificed the relationship with Monster to feed my career. I never got that chance, or rather I never felt like I had that chance. In retrospect, I could have buried my head into the sand, kept on my path with the thought it was "all for the best" and lost out on what has become the most important relationship I have ever, or will ever, have. Perhaps I did make a choice, unconscious though it was. I've resented it, resented giving up that other dream and blamed it on autism, on Monster on Mr. In the end, I guess it really was my decision. And one, though I regret much of what I did, I don't regret.

And that's the unknown reward, the silver lining on this journey of Autism. The fact that you, as a parent, are forced to accept your child for who they truly are so early on in their life. Not who you wish them to be, or who you dream them to be, but who they are. The dreams, the delusions, don't have the chance to root and grow. Challenges, quirks, difficulties, triumphs, love, anger, rage and pain-each is a gift that I would have never been given had he been "normal". I know my son in ways that I had never imagined. I can read his moods, his mind, his happiness and fears, in ways that I would never have been able to do had I not been "forced" to become the Sherlock Holmes I've become (though I feel more like Watson most days).

So with my new-found self-indulgent insights, my impatience grows. I want to be on the road. I want to escape the drama of prolonged good byes, hide away from the pain of losing that which I've built here. It's time to start fresh, to see if I truly have learned from my mistakes and grow into the person I hope I can become.

I look at Monster, playing loudly next me. Giggling at who can guess what, at Mr. who is devastated at the US loss to Brazil (or what we think is a loss, Monster switched on his computer game before we saw the end of the match) and I just want to get on with it already.

Patience has never been a virtue that I possessed!

Back to school, for now

Monster started ESY (extended school year) today. He missed most of the last week of school because of a foolish parental error. Commencement was on a Wednesday, which we skipped because Monster doesn't generally do well at them and he was having sleeping issues that week. We assumed that commencement was the last day of the school year, so we didn't bother to go back to school either Thursday or Friday.

On Friday, the school nurse called to ask if Monster was still sick. Um, yeah, sure.

Oops.

So Monster has had a week and a half off from school, a decent break for him. In that time he has been to six flags about 3 times, and a ton of what always sounded like a lot of fun to me in between Speech and occupational therapy. I know last Wednesday they took in a Giants game (too bad the giants lost) coupled with a bart and muni-metro ride.

Anyway, today, back to school (cue the snapping of a whip). Monster was one happy little guy. Most kids would moan and groan, but Monster didn't even whine all that much when I told him he couldn't bring his bag of DVDs. I was worried; at the end of last term he wasn't that happy about going. Today, he seemed eager to go and had a great day. Mr told me that Monster was a regular chatter monkey. By the time I got home, however, he was quite tired.

His sleeping hasn't been that great. Ever since we went gluten free, he has been waking up in the middle of the night for a while. He generally won't settle down until both Mr and I are in bed with him. Cute, but cramped (at least it is when the dog joins us). Other than this sleep thing, a few days of increased hunger (as he chose not to eat some things) and some increased crankiness (which seems to be abating), taking the gluten out this time hasn't been as difficult as the first time.

So for now, things are going ok. I know in the next few weeks things are going to get pretty crazy. I don't have an exact date yet, but this job ends a week from Thursday and I definitely need to start work by August 1st so we have continual health insurance (not to mention our rainy day fund is quite dry). So I'm hoping to get everything packed up and on the road the first week of July. Currently, we are waiting for the relocation people to help us set things up, so who knows how fast any of this can be done. I'm completely overwhelmed with the idea that we are going to have to pack everything again and move it across the country. On the other hand, we have a great opportunity to really take a critical eye to the mounds of crap we have and only take that which we really need. I know that I won't actually being doing most of packing (thank the gods), but I will have to do most of the cleaning on this place, which is also a scary prospect. A hyperactive child and dog in close quarters with too much crap does not lend itself to a spotless house, and I'm not a great housekeeper to begin with!

For no good reason, I thought I would include a Monster and I in a very, uber brief duet of Hakuna Matata, one of Monster's favorite songs. I keep trying to get him on tape, but he is being uncharacteristically shy about singing for the camera.

Monster's response to pain

A month or so ago (I blogged about it, but can't remember when) Monster had an ear infection. We figured it out fairly easily-he pointed to his ear and screamed himself to sleep.

Tonight, he was pointing to his ear again when asked if he had an owie, said yes-but instead of screaming, he was giggling. Normally, I wouldn't blog about something like this, but a message board post made me reflect upon how my son handles pain-and shows the world he is hurting.

Years ago, after we first got the diagnosis, I went to a lot of conferences, read a lot of books. I read, often, about how autistic kids had a higher than normal threshold to pain. I remember hearing stories about kids who had broken limbs but didn't react to them, kids who had severe ear infections and never complained. I wasn't there; these weren't my children so maybe they did indeed have a high threshold for pain.

However, I disagree with the general statement that people with autism have a higher threshold. I think they just express those feelings in a different way. They may not process "pain" the same way neuro-typical people do, but they do indeed know something is not right-something is off or different or, yes, even "hurts". Pondering this always leads me to the same rhetorical question, What is pain? If someone from another planet (who happened to speak english) came to Earth, how would I explain what "hurting" or "pain" is? What words could I use? I'm not clever enough, or intelligent enough, or wise enough, to come up with a way. You just know, don't you?

When my son was younger, and less verbal than he is today, he would express overwhelming emotion by biting-mainly me. He would bit me when he was very happy as well as when he was very mad, very scared or very excited. He wasn't trying to be mean (or rather, he wasn't always trying to be mean), he was just trying to release excess emotion. To this day, his default setting (when he is too overwhelmed or too tired) is to bite himself-not just in anger or frustration but when he is very pleased and excited.

With our kids, ok, at least with my kid, the obvious is not always that obvious. Giggling can be the sign of pain and biting can be the sign of happiness.

Never a dull moment in the life of a furnace mom ;)

OK, Don' worrties

Monster's favorite phrase these days is "OK, don' worrties", his version of saying "don't worry" or "no worries", not sure which.

We've only been gluten free for the past 4 days, so I wouldn't think his recent chattiness is due to that, but we have been doing the cod liver oil, calcium/mag supplements and a digestive enzyme for about a month or so, and they may be having an impact. The largest impact I've seen has been in his sleep. Except for the past few nights, which may be because of the gluten removal, he has not been fighting me or sleep nearly as much as he use to. Rather than bedtime taking hours (and resulting in tears, bruises and/or blood), it takes about 5-10 minutes after his movie is done, and for those nights we watch Cars, he's asleep before the end of the movie.

I'm not sure which is the biggest impact on his sleep, treatment wise, but it is definitely related to his GI problems diminishing. In general, his bad nights corresponded to tummy problems-gas, bloating, cramps. We made one change to his diet (besides the gluten free this past saturday/sunday) and that was the removal of all artificial preservatives and colors (sodium/potassium benzoates, nitrates, etc.). Basically, nothing we can't pronounce or identify. The major problem was cutting sodas-Monster loved his diet coke (yes, that's my fault).

Since he is doing fairly well, and it seems like we are definitely on the right tract to treating a lot of his physical issues, I'm now turning my worry to the upcoming move. We've been in this house since Monster's diagnosis-the past 5 years. He knows this area, these people. I'm not sure how he is going to deal with a new location, a new house, new climate. He was going to be starting a new school this fall anyway, and maybe even a new teacher, so that challenge was going to happen regardless of our living location. I sincerely hope this new school is 1/2 of what we are hoping for. Given California's budget crisis, things around here are going to get even worse. More kids, more needs, fewer people.

Gettin More Organized

You would think that after 4 years I would be more organized than I am, but I'm not. I have a theory that since the entropy of the universe is constantly increasing, every time one of you out in the world get organized, I get less organized so the universe is kept in balance (you can thank me later).

Anyway, with the move coming up (whoa, was that weird to say) and us playing around with Monster's diet, I've put together a food/behavior diary. Now I started one a few weeks ago, but it was more or less just me and Mr. jotting down what we noticed in a free-form way with Teacher filling out what Monster got into at school (his food at home is fairly constant).

I've started McCarthy's new book and she had a really good suggestion for what to keep track of. Being the engineer I pretend to be, I put together a MS Word document and put it in a binder (I swear, I have a million binders breeding in my garage!). Here it is (well, not formatted but you get the idea of what it says, I can email it to anyone who wants a copy, just let me know either by comment or email/PM me):

Date:

1. BM(bowel Movement): Yes/No Size (1=small to 5=large) Difficulty?

2. Supplements: What Dosage AM PM

3. Sleep: Amount Quality (1=good to 4=restless) Number of wakings Problems (explain)?

4. Rashes: Color Size Location Onset/duration Antecedent

5. Evenness of Temperament: (1=even to 3=typical to 5=swinging)
Comments:

6. Irritability: (1=pleasant to 3=typical to 5=cranky)
Comments:

7. Checking out: Type (fixation, staring into space, other-explain)
Frequency/Duration
Comments:

8. Flexibility v. Rigidity: (1=rolls with things to 3=typical to 5=must get own way)
Comments:

9. Self-Injurious behavior:Type (bite/pinch/other) Severity (1=light to 5=severe)Duration (1=several seconds/can distract to 5=several minutes cannot distract) Antecedent(if known)
Comments:

10. Food Diary:What Amount New? Reaction (if any)

We'll see how well this works and how well we can keep it up. Monster is on Day 2 of no gluten and so far so good. He has been very particular (and vocal) about what he wants to do and a bit whiny. I keep telling myself that as his behavior gets a bit grumpier, that's a good sign that the gluten was affecting him and now it is working it's working its way out of his system.

So out goes Gluten

A few years ago, Right before Monster was 4, we decided to try a gluten free/casein free diet*. From my reading it states that it may take up to a year before all the gluten is out and to see results. Monster had all the signs-inexplicable rashes, rosaitia, red ears, an almost addiction to Milk (he was drinking about 48 oz of cow's milk a day), no speech, hyperactivity, etc. etc. etc. It was pretty bad from every perspective.

First, finding alternatives for dairy-yogurt was his main source of protein along with the milk-milk, pudding, cheese. Finding alternatives for gluten-cereal, bread, fish sticks, playdough. Getting his grandmothers on board enough to follow through. :shudders: To this day, Monster won't touch any form of "fake" milk. He went totally to water and nothing else. We saw a nutritionist to help us identify what we could do to help with protein and fat (side note: after spending my entire adult life cutting fat out of my diet, it was very weird to look for ways to add it into Monster's).

Second, I was in the midst of a huge case at work. I was easily putting in 80+ hours a week while dealing (i.e. fighting) with the school district (that year we started the IEP process in December and finished it in June, when we signed with reservations).

Third, his behavior tanked big time (explanation below). He was biting someone nearly every day, with me being the main target. I looked like and abused woman, with bite marks up and down my neck and shoulders. I often wondered if anyone at work noticed.

We made it about 5 months when one day he got some casein. Ok, I admit, I gave it to him. For some reason, it didn't strike me until after he ate it that buttered flavored popcorn would have butter in it. Casein is a milk protein, and is found in butter. The reaction was immediate-his ears got red, his eyes got glassy and he "checked out", meaning he was shut inside himself-we stopped existing, as did the world we live in. The final kicker was when he literally started bouncing off the walls. For those who haven't had the pleasure of seeing this, picture a small bundle of energy-about 3 feet tall, running full speed with arms stretched in front if it, until the arms come into contact with a wall. In a nearly fluid motion, the arms, acting like shock absorbers, flex at the elbow, then push back off the wall while the body pivots and runs full speed at the opposing wall. This went on for about 5 minutes, and only stopped because we picked him up and started throwing him (literally tossing him through the air) onto the opened futon. The entire time, Monster was giggling maniacally.

So we knew that casein had a huge effect on him. However, when he snuck (aka grandma gave it to him) a piece of pizza crust, no effect. So we cut out casein and allowed gluten back in.

We were able to trace a similar reaction back to artificial dyes (you know those things labeled "Dye No.") and cut those out (f'ed up side note, did you know that marshmellows have blue dye in them to make them white? WTF is up with that?).

Recently, we started to notice another inexplicable rash, with reddened ears, so on and so forth. We have been keeping track and found that some soy products were causing problems (not sure if it is a specific ingredient or cross contamination) and today we had a full fledged reaction to some pita chips. These chips had pretty much nothing in them but sea salt, enriched wheat four and some vegetable oil (they were an organic product). So, we've decided to pull gluten entirely, again.

Sigh. Since his main dinners are pizza (no cheese) and pasta, this should be fun.

Wish us luck!

**************

GF/CF Diets

There are a lot of good resources about GF/CF diets (good website http://gfcf-diet.talkaboutcuringautism.org/index.htm) and autism. I'm not sure I completely understand this whole thing, but since I learn best by trying to teach others (even if they are just in my own mind) here's what I think I know. Research shows that autistic individuals have a lot of gastrointestinal (GI) issues and a large percentage suffer from intestinal distress-including inflammation. It is hypothosized that either an auto-immune response, or some other cause, prevents these people from being able to break down the gluten and casein proteins. In addition, the chemicals that act like gates to seal off the gut are not present (or present in insufficient amounts) allowing these proteins to pass from the gut into the blood stream. These proteins then attach (or react, again, I'm not clear on this) with the neuro-receptors in the brain that receive opioids (like heroine). In essence, if I understand it correctly, these people get strung out on milk and wheat, and they become addicted to it.

Thus, when removing gluten and casein (and I've read soy acts the same way, but I haven't seen that as widely discussed as gluten and casein), the person goes through a withdrawal. This is why it is suggested that this is done slowly. Of course, not really understanding everything and wanting to "cure" Monster, we completely cut him off from all casein and gluten cold turkey. His behavior was atrocious! He was completely out of control for several months.

If one is interested, there are several good references I would recommend. First, for those with a biology/medical background (or the truly geeky among us), I highly reccomend "Changing the Course of Autism" (http://books.google.com/books?id=BP86uPB3bi8C&printsec=frontcover&dq=changing+the+course+of+autism&lr=). I'm also reading "Children with Starving Brains" which seems to be a bit easier to understand. I've heard great things about Jenny McCarthy's new book "Healing and Preventing Autism", but I haven't read it yet (it's next).

These types of diets do not "cure" people with autism, in my opinion. What they do is treat the physiological aspect of autism (which mainstream medicine is just starting to recognize).

Bye-Bye Bay Area???

I recently received a job offer from the Rhode Island firm. A very nice offer-not slam dunk, but nothing to sneeze at. While thinking it through, I contacted a place closer to home who was a definite maybe, and they turned out to be a definite maybe in a few months. Since this gig ends in 3 short weeks, we can't really afford to wait a few months.

So with one last card to play, it looks like Rhode Island or bust for the Steel clan. Not that this offer is a consolation prize by any stretch. It's actually fairly awesome and a dream come true in many aspects. I even love the location and it seems like the school system is more conducive to Monster's needs. The job is a dream. The co-workers quirky and fun. The work extremely interesting and awesome. In another world, there would be no question, this would be it.

And yet, it pains my heart to have to leave California again. Having moved away once, I was able to gain a true appreciation of the quirky state I live in. By nature, I'm a fighter. Seeing what my state is going through, I want to fight for it. I want to fight to make this state what it once was-to deliver on the promise on what it can be. It feels cowardly, to some extent, to bail when the times are so tough. As much as we fight our school, I have a sense of accomplishment here-I'm known and know people. I've grown close to amazing group of women (and men ;)) who are all fighting with me-my sisters in arms. I've learned so much about what I'm made of, about what I can do and about what my son is capable of. I've learned to not accept any limitation, neither for myself nor for Monster.

The thought of starting over, yet again, is terrifying. I'm not sure what Mr. thinks, honestly. He is close to native in this area and I remember how he withered when last he tried to transplant. Family, mine and his, are close and my mother's health is quite bad. She won't like our moving at all.

Then again, I like food and roof over my head. I feel ungrateful for not being happier about the opportunity. No, that's not right. It's more like I feel guilty for being happy about it. I wonder if I'm strong enough to pull this off again. Last time, I was too naive to understand how different it would be across the country. Now I know better and have more challenges.

Of course, now, I have more tricks up my sleeve and know how very much I can survive.

So Rhode Island, look out. The Steel clan may be invading!

The Need for Speed

Mr and I have what may be construed as an odd approach to Monster. We believe that to an autistic brain, this world is a terrifying place. Monster's senses are under a constant assault. Either the sights and sounds overwhelm him or he cannot sense where his body is. Until recently, rarely did he feel comfortable in his body or in this world. Unlike neural typical (AKA "normal") kids, he could not exercise any measure of control over his own life. To some extent he could not understand, to a greater extent he could not express his wishes, fears, anxieties or joys.

Because he has so little control over his life, a life that has been filled with doctor's appointments, evaluations, classes and therapies, Mr. and I decided to give him as much control as we can. Whenever we can, we allow him to choose whether nor not to take medication when he feels poorly. We ask him if he wishes to go to the doctor when he feels ill. He gets to decide what we do on our free days, who he sleeps with (Mr. or me), what's for his dinner (within his diet) and which movies to rent or watch. One other freedom we give him is the decision of when to go to school.

Many times, on Monday mostly, he has a bit of a meltdown about going to school. We require that he goes to school to say hi to teacher. If he still wishes to leave, we will say goodbye and come home. In general, he gets to school and asks to stay. Before this morning, he has only chosen to leave once. And that day was a horrific first day of summer school in a new place with an unprepared teacher; leaving was a good choice! This morning, he didn't want to go to school. In the car, he said "go home". At school he said "go home" and when it came time to say hi to teacher, he said "hi" and "bye". And away we went home.

I have no idea why, Mr. thinks Monster is suffering Spring Fever-he's tired of school.

Instead of school, the boys went go-carting, Monster's newest love.




Here they are at 6 flags over the weekend. Mr. is telling Monster "All Done" and Monster is saying, "That way, dad"



Go, Go Speed Racer!

I think something is working

Monster had been incredibly more talkative lately. Mr. and I are keeping a very detailed food diary (Monster's teachers are filling it in for us from school) and have started a daily behavior diary. Mainly keeping track of any meltdowns, pains, problems, and bathroom schedule (:rolls eyes:). I've got that itch in the back of my head getting stronger. I really feel like we are on the right road, at least for some things. After his bath (yea! we got him back in the tub), he pointed at the water and said "get the ball".

Now, some would say I'm a pushover for reaching over and getting the ball, but he rarely ever has spontaneous speech and I don't think I've ever heard him use a pronoun without prompting.

So something is working, I'm just not sure what. I'm so annoyed that I'm trapped by my finances. I wish I could afford the testing we need to show what areas Monster needs supplementation and what areas he has too much of whatever. I'm mostly flying blind and terrified of making things worse.

Between what my mom's going through (she has cancer, it sucks when an anti-depressant becomes optional due to finances) and the fact that autism testing is not covered, I think out health care system really sucks.

The Good, the Bad and the Scary

I went on another interview last week, this time across the country. While on the plane, I decided to not bring fluffy, relaxing reading but rather Jepson's book "Changing the Course of Autism". From what I can tell, this book really details all of the studies that have been done regarding treating autism not just as a neurological condition, but as a disease that can result (or cause?) issues with the gastrointestinal, immune and neurological systems. To my laywoman's eyes, it appeared to be rather comprehensive (Dr. Jepson has a child on the spectrum) review, but ("Dammit Jim, I'm a metallurgist, not a biochemist", as Bones would say)I got very little of what he said.

To put it as succinctly as I can, some types of autism either is the result or cause of metabolic issues that result not just in what we view as autism (social issues, lack of eye contact, sensory processing problems) but also in tummy problems, immune system deficiencies and poor nutrition. I agree with this idea, which is why we've started Monster on supplements and dietary changes, I just wish I understood it more. I feel like I'm back in school again (heck, I was taking notes while reading the book). It did impress upon me the importance of some of the things we are doing and is a good guide for what we can and cannot do on our own (without a DAN! Doctor).

Onto the this blog's title...

THE GOOD

My being out of town is always tough on Monster. He misses me, which throws off his schedule somewhat, followed by being pretty upset with me for leaving. This time wasn't really any different, but the impact was much milder than I've seen in the past. And this time he was also battling an ear infection.

Mr. and Monster went to 6 flags on Saturday. Mr stated that Monster did very well, and even rode some of the child rides. On Sunday, we decided to go back again (we have season passes) since the weather was so nice. In the past, going to 6 Flags was a reminder to me of what I didn't have. A child who would/could ride things that I always dreamed of riding with my child. A child who was prone to attacking other children when he felt threatened or crowded (a guarantee at these places).

But not this time. Because Mr. and Monster rode some rides on Saturday, I decided to find out what accommodations 6 Flags made for special needs kids. To my utter delight, they give you a pass that allows you to enter through the exit, thereby reducing one's wait (and the likelihood of a meltdown)--just go to the guess services inside the park and tell them you have a child with autism, you can also bring in food if he/she is on a special diet, just tell the security folks at the gate.

Since Monster rarely actually goes on rides his first time seeing them upclose, this was a great way for him to get comfortable with the rides.

He had a blast riding the go carts (see below) the train, the spinning balloons (which got me a bit sick) among other things. He even rode a small roller coaster.

THE BAD

Success always has its price with our kids. The price we paid on Sunday was Monster's latest trick, holding his breath, followed by a screaming fit. Poor baby was so very tired. The breath holding bit is terrifying. He use to have sleep apnea and memories nights staring blindly at the ceiling counting his breaths are still vivid.

Mr. let Monster use his portable DVD player a bit too much while I was gone (a necessary tool so Mr. could get some time to do other things). His DVD player is like an addiction we have to break all over again whenever we try to reduce how much he uses it. Currently, Monster must have at least one bag of DVDs (about 10-15) with him at all times. He can't play them in the car (usually he isn't allowed his dvd player in the car), but he likes to organize them and read the back covers.

THE SCARY

We gave him his bath, and forced a hair washing (the only way his hair gets cleaned anymore). Mr. said he did ok by the end of his bath. However, tonight when we mentioned bathtime, Monster's face got red (as it does when he has dairy or is over heated), he started crying hysterically. To try and calm him down, I got into his bath and asked him to join me. Oy, you would have thought I was sitting in a vat of acid and was trying to push him under. He was hysterical. On the plus side, his language was doing very well. I clearly heard him tell me to get out of the bathtub and put my shirt on. So now he is not only afraid of baths/showers, but he is scared for us to bathe/shower. I'm not sure where this came from, or how to break him of it. Epson salts are very important for both the relaxing for bedtime but also for the transdermal absorption of sulfate to help detox and correct sulfate deficiencies.

All in all, though, his brief regression into his own head seems to be over. As I wrote in the blog, it does serve as a great reminder to how far he's come.



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