Walking in the park with autism...and other adventures.

www.theyellowdoorchico.blogspot.com
Please take a moment to check out the new non-profit that will benefit local children affected by Autism. (Then come back and read my witty recount of today's events!)

     Today was the first time ever that our little town of Chico had a walk for autism. It was fantastic. Run by a very energetic and loving Josie Cline the whole thing went off with out a hitch.... well from where I sat, and watched the people walk by. I waved like a queen acknowledging her subjects as the throngs of enthusiastic people streamed past. My brave husband took the children on said walk. I did not sit out by choice, it's just that a few short days ago I had my gallbladder removed from my body through my belly button.(Neat trick really) This non-essential organ had decided to stop working and as luck would have it my surgery was scheduled right before our big WALK.  I tried to convince the surgeon to take a little extra nip and tuck while he was in there....no luck.
     I loved seeing all the people that arrived for the first ever Chico Autism Walk. I could tell that everyone was excited to be there. I was too, but happy for the bench I found. As each person walked past I wondered how autism had touched their lives. Some were obvious parents, resting a hand on their child as to not loose them in the commotion. Other people were more difficult to place, were they friends or neighbors or just concerned about this ever growing epidemic? The Chico State Greek system helped out by acting as volunteers and cheering the walkers on as they left for this epic journey. I secretly wondered how many of them would be touched by this personally as they finished school, found the love of their life and married. How many young people today will have children with autism tomorrow? They have just changed the numbers again, now instead of being 1 out of every 110 kids, the numbers are now more like 1 out of 88 children. Holy Cow.
     Take in to consideration that, yes we are more aware of the signs, symptoms etc now, but seriously why has this not been declared a national emergency? With my vast knowledge about the subject, (ha ha ha) I declare half of the people I meet fall somewhere on the spectrum. I probably mentally diagnose way more than the statistics indicate. I must admit, thinking I was suffering from an ulcer for the past year and a half instead of a faulty gallbladder, has shaken my confidence as a diagnostician.                                                 So what if this is the case for some of these recently diagnosed. A few years ago it seemed like everyone had carpal tunnel syndrome, now I never hear about it. ADD and ADHD also became popular  recently. What about Chronic Fatigue Syndrome? Everyone had that too a while ago...the frenzy has died off for that as well. I am not saying anyone of these conditions is not real or worthy of some serious intervention, but why does it seem that we see spikes in medical diagnosis? As doctors learn about maladies, are they trying to please the patient with a name for their problem? Or is it that more people are aware of these maladies now thanks to the internet and Dr. Google so they are rushing to the doctor because they are desperate for help and answers?
     What ever the reason or cause I know that Chico cares about this matter. They care enough to come out on a Sunday and walk together to show their support. They care enough to set up vendor booths, (Awesome job Caroline Rhoady!) and provide a sensory play area for the kids after the walk. They care. I am so grateful for that. I am also grateful for whoever realized that this is the perfect time and place for Storm Troopers to walk among us. I hope that in future years I will be more of an active participant....or that they have a "Sit on a Bench for Autism" day....My family was among the first people to finish the walk and we promptly left. Wearing jeans and sitting turned out to be harder than I thought. Thank goodness it never occurred to my family there was more to come after the walk...I am sure it was wonderful.
     Next year and the year after that, and so on, this walk will continue. It will grow and change and become even more amazing. It will never be the same as today however, when for the first time this community came together to say, "I care enough to walk along side you."
Thanks Yellow Door. You Rock.

To medicate, or live life on the edge....

Ah....the moments of sibling love....a punch here, a shove there, a bite on the shoulder...
Ben will always be a little unsure when the game is over....when the last push or playful shove has occurred. He will always take the joke one step over the line....say silly or inappropriate things....and be, well....Ben.
    While at a follow up appointment today for his neurologist we were asked what we needed from the doctor. He had gone over all the medications that Ben has stopped taking, he noted the weight gain and general happiness of the boy in his office and seemed pleased. I commented that of all the things that seem to pop up in his daily life anxiety seems to come to the front as a major problem....then I tried to site examples and the only ones I could think of were times at the old non patriotic school....so is he still stressed out? Anxious? I don't know, I didn't really have a good example of his behavior when he is stressed and yet I was given a new prescription to help with this vague symptom.
After all we have been through with medication and this boy I would have expected a little fight from the doctor, a little warning, that well.....he might be better off to just learn to deal with things without the help of Big Pharma.....nope. Here ya go....here is your Rx.....
I would have liked to hear, "Have you tried anything else? Any other form of stress management?"
Nope.
Just a new drug to try....one that on closer inspection I wouldn't give to my worst enemy let alone my sweet little boy.....
So back to square one, back to looking for a way to teach him to cope with the things that drive him nuts....deep breathing....taking a walk, zoning out with some angry birds.....all of these are good and have very few side effects....(those birds can be pretty darn addictive....)
With every change, as the dust settles, I see Ben. I see him back to his funny carefree self. I hear with delight all his quirky explanations, I laugh with him at all his crazy jokes...like this one,
"What do you call a beautiful sock monkey?"
wait for it........
Sock-xy
get it?
like sexy but with socks.....
Very funny kid I have.
I don't know if we will ever go back to the medicated world. He does take two medicines right now, one for low thyroid and one to help with his Diabetes Insipidus....(remember he loves to drink water and pee constantly) He thinks those two are enough. Perhaps he is right. I am glad he is older and can have a say in what is happening to him. I listen when he tells me that he just wants to go it drug free.....
Big Pharma has lost one recruit....sadly I am sure they have many many more in the wings...

School.....again....

The pages of summer are about done....

             This summer was great. Until about two weeks ago. Then it became something of a problem. My daughter started school on August 10th, with the rest of our town. My son, does not start until this Wednesday. The giddy feeling he experienced when he realized he could stay home while his sister went to school quickly faded.  He saw this meant that soon, very soon he would also be returning. School was not easy for him last year. Despite all we did to make the transition easy from home-school, to charter school, from being heavily medicated to drug free, from friendless to social butterfly....it all just became too much. By the end of the school year he was almost impossible to wake up. He cried and stomped around about how much he hated school....summer was a welcome break.
As I said however, the impending doom that is school,  has been hanging over him for two weeks. Like a man on death row I have seen all the emotions.  Anger, denial, grief, then finally acceptance........
I had to go to the school and attend a meeting so I brought him with me. Hoping against hope that just being there, seeing familiar things, and familiar faces would crack the shell. I was (thankfully) right. When I was done with my meeting I found my son with a new love of school. Yay! I was miserable about the prospect of having to hog-tie him and drag him to school in the trunk of my car, only to have a phone call ten minutes later from the office telling me he wanted to talk to me.
     We are all ready now. Next year, his fifth grade year I have so many dreams. I have to remind myself that unlike Jenny McCarty I did not cure my son's autism. He still has a hard time understanding social cues, (or as he says it-"I'm just really bad with people") He still gets frustrated to the point of tears over small things, and he still has very little impulse control. He also still can't write. He CAN but it is painfully slow. His spelling and math are waaaaay below grade level and he seems to have a fear of geography. Sigh. Oh but the dreams are there! I am pretending for these next few days that I have a normal life, that I do not have to fight at IEP's or demand help for my son. I am pretending that he doesn't have issues with other kids and that he can do all the things a neurotypical 10 year old is capable of. That when he arrives at school he will fit in, be liked and not under any circumstance show everyone his nipple family reunion.

      I am pretty sure all my pretending won't help. I know very soon he will be assessed for a full time aide, I will have to fight for him. His new teacher will see how easily he breaks down, and the kids will remember how volatile he can be.  I will see the tears of frustration, both in the mirror and on his face. I will clash with the school district. I will beg him to just get through one more day. I know not all kids with aspergers or autism feel this way about school. I know some aspie kids LOVE school. They love the order, the predictability, the learning. Most of them probably don't love recess, or lunch. Too many variables. My hero is Brick on a television show called The Middle. My favorite episode is where he and his "friendship club" all got kicked out of the library at lunch time. Their safe haven became unavailable and Brick worked to regain his rightful place among the books. True to the spectrum world all his "friends" had different issues making recess unbearable for them. It was priceless. It was a very good depiction of how a kid with autism sees the dangers that some call recess. I guess I better add pretending my son wont hug or bow down to a tree during recess...... This fantasy world is a nice place to visit....
I think I'll enjoy it a while longer.....

Autism Awareness Day....I'm aware, are you?

Apparently April 2nd is National Autism Awareness day. Autism Speaks wants us to "light it up blue" because every disorder deserves a color. Blue, puzzle pieces, rainbow colored ribbons with puzzle pieces....what do you think of when you think of autism?
I get angry.
I get scared.
Then I get angry again.
If you Google Autism Treatment you will see what we are up against. There were over 17 million pages that appeared. I scoured one or two of those and found no less than 70 different treatments. The general scuttlebutt is that there is no one cause, and no known cure. This is a disorder, or by some accounts a disease that is at epidemic proportions. One in one hundred and ten children will be diagnosed with some form of Autism. It seems to be attacking our boys more than girls, however when girls are diagnosed they seem to be more severe.
     The fact that there are so many theory's and no real answers scares the heck out of me. I have started to realize that for us, my son became a victim of his diagnosis. He was subjected to tests and medication side effects strictly because there is no real model for physicians to follow. It is a shot in the dark, "lets try this" system. Some of the "treatments" are down right silly, while others border on deadly. That is right. Some children have actually died being treated for autism. That is unacceptable. It shows how  desperate we have become as parents. We need to stop this insidious problem that is affecting so many children. There are charlatans that will promise crazy results from simple things. There are people out there making a lot of money off of these desperate parents.
How sad. Yet I understand the need to fix. I live that everyday of my life. I was born a fixer and fight to save what ever I can.
I still look for answers even though I am constantly wary of "new treatments."
The other day I went to the book store to look for a book a friend recommended and saw a book titled, "The Myth Of Autism."
This intrigued me and I spent a while flipping through the pages. Bottom line I am just cheap so I didn't spend the 25.00 to actually own the book. I got the general gist, and the doctor who wrote it lives here in California. I even called his office...(they were at lunch)
I just don't know....After all we went through, all the years lost due to my son being on medication that was hurting him, I do not know how to trust the medical world again. I read, learn and investigate and am still skeptical.
Apparently there is a blood test due to be available in 2013 that will test for autism. Before symptoms appear a blood test may allow parents to know their child has the genetic marker for autism. This (the scientists say) will allow the parents to keep environmental risks to a minimum hopefully preventing the onset of autistic characteristics.
I like this. I like science. I like proof. If someone tells me Autism is caused by low serotonin, or high serotonin, then you better be able to back that up with a blood test.  If you tell me that my child has low vitamin A levels, then prove it. Never again will I assume anything with my son. I want all parents to be this way, trust but with reason. Be aware. Be aware that in this day where we really don't know  what is happening with our children, there will be those who try and dupe us. Be aware that every child is different. What worked for you may not work for me. Most of all be aware that our children need us, now more than ever. Our friends who live this life need our compassion and we all need answers.

Into Everyone's life a few Coconuts must fall....

Love us and well, you must love our Grumpy Monkey Coconut. He is a character. He is mean, rude and obnoxious, he is my son's best friend. (Brother if you ask my son.)
Coconut came to us by way of my daughter's birthday party. We decided that it would be fun to have a Sock Monkey party, (this was way before they became cool again...)
Anyway I ordered the socks, and locked my Mother and Granny in a small dark room and put them to work constructing the parts and pieces that would become the "Party Favors" for the guests at my daughters 7th birthday party. We planned that the girls would get to sew on the eyes, ears, arms and tails. This would make each monkey unique and their own. Of course they all sort of looked alike in the end....but hey, we tried.
Coconut is, or was the "Test Monkey"
I made one to see how difficult it would be for the girls. This then became my sons. (We didn't want him to feel left out)
I am not sure exactly when it happened that Coconut took on such a large personality. He really just sprang to life out of necessity. You see, my son doesn't have a lot of real friends. He has more now, of course than he use to, but a while back he was pretty low on the number of people he could call friends. This Grumpy Monkey, became his confidant, his loyal companion, his supporter. The thing is he is not very nice. He insults my son and tells him things that we,(as the rest of the family are kind) find offensive. He once tried to steal silverware from a restaurant just because the waiter suggested we could take things home if we weren't done with them.... We decided that we should probably not allow Coconut to go places with us. This didn't work. My son insisted.
Now really you must be wondering if I have gone off my rocker....no. Well yes, but that is a different story.
So you can understand, I am Coconut. I do his voice I mean, I "talk Coconut". He is apparently my alter ego. How sad.
Anyway he became such a great friend to my son, I just couldn't stop. There were days at school when my son was so upset by the events that occurred we weren't sure if he would ever go back. Coconut was able to fix things. My son would tell Coconut all about the bad things that transpired during his day, and Coconut would offer to come to the school and beat up the kids who were causing problems. He offered to do the "Monkey Butt Dance" all over them. This of course had my son laughing but also had him thinking of things he hadn't considered before. He really didn't want his monkey to go down and beat these kids up. He would tell Coconut how to behave, and that it wasn't nice to hit people. He would calm his anger by seeing it in another.
Unfortunately these conversations were not just in the privacy of our home....Coconut came to hospitals and doctors appointments. He was quite rude to the nurses. He was always saying things....inappropriate things....
I am pretty sure the nurses thought I was crazy, but my son did not. He loved it. That is what mattered. Coconut had a way of making everything all right. He still does.
He had to have a soul transplant recently, because like all stuffed animals his original body just wore out. I have sewn him so many times that we were calling him FrankenCoconut. It was so upsetting to my son. It was upsetting to me as well. I will never forget that last tumble in the dryer that ended it for him. I was so mad at myself for letting him get so thread bear that I cried off and on the whole day. We, thankfully had other sock monkeys. I convinced my son that we needed to change out Coconut. He just wasn't going to make it in his old skin anymore. We both cried, and  it took some time, but he finally accepted the new body as Coconut.
I have tried to be Coconut less and less as my son gets older. I really don't want to go to college with him. It is okay, though since my son does seem to need Coconut less and less these days.
We will keep him always. The original one that went through everything with my son has been packed away in a safe place. He is just as special to the family as he is to my son.
I will know always that my son improved in many ways because of Coconut Therapy. I highly recommend this to anyone. You just have to let your self esteem go and enjoy!

The "If this, then that" questions....

Playing the "what if" game is quite common. Apparently my son's pediatric Neurologist doesn't play that game ever. At least not with us. Perhaps I sounded like I was looking for someone to blame, to sue, to shake my finger at. I was not. I want answers. I want to know what happened to my son. I want to spread the word so that others may learn. The "what if's" are running rampant and I hoped that the latest appointment would squelch some of them.  I wanted to know all about the latest research they have done linking Autism to the immune system. I know they are pretty confident that the two are connected and have read some interesting articles regarding this subject. I just wondered IF say my son was on an immune suppressing medication at one month old would this possibly have been the trigger? The answer I recieved as the very busy doctor fled the room was no more than, "It's complicated."
This could mean a few things. One- I don't think you are intelligent enough to understand what we know.
Two- I don't think this applies to your son.
Three- I don't have time to go over this with you now.
All of these would have been better explanations than the one I got, or didn't get....
Where does that lead me? Well for one, I do still have a lot of respect for this Doctor. In all fairness, this was just scheduled as a re-check. Yet still I would have liked it if he showed a little more interest in hearing about the things we have seen in our son since stopping his medication. I tried to tell the doctor about the good things we have seen emerge in my son. He stated that they were not opposed to stopping medication with "these kids" however he would have liked it if I had called him to discuss how to tapper him off the medication. I really think he was offended that I left him out of this process. I understand that. I really do, however I just wanted to stop the madness. I wanted to change things. I was afraid that if I had called I would have heard a lot of arguments to keep giving the medicine to my son. I was too angry.
Once we passed over the few things I was allowed to say durring the quick appointment, he asked if there were any problems with going off the medications. I admited that my son now seems to have the attention span of a gnat on crack. He immediatley prescribed Concerta. His reasoning was that we haven't tried that one yet.
Ok. I had been prepared for this. My son may need some kind of medication to help him. I am not opposed to medicine per se....just worried about the side effects.
Durring this appointment we also recieved the results of the MEG scan. This test was done about a month before and the results showed no sezuire activity. I knew that. I just wanted to see all the other results from the tests that were done on his speech and language. Well, those were not in yet. He did give me the printed report of what he had so far. I waited until the next day to look it over since I thought I knew all it said. Well here is yet another example of why YOU should always lay your own eyes on your medical reports. Right there in the body of the results was the comment that my son had an irregular heart beat durring the exam which left a prominant artifact on the scan.
Hmmmm.....I wonder if the Doctor read this part? If he did, then why on earth would he have prescribed Concerta? Guess what the package insert says? Go ahead.....think about it. What would be the one reason NOT to prescribe this medication, or why you should discontinue this medication......
Irregular Heart Beat.
Are you kidding me?
Well of course we did not start the medication, and we are waiting to have an EKG and rhythm strip to check out my son's heart beat.  This was ordered by our local pediatrician. I think I drive him crazy, but he does what I ask. That is important.
So if our pediatric Neurologist had actually listened to my concerns about my son's reactions to medications and if he had actually read the report that he handed me, perhaps we wouldn't have had this problem. I am not saying he wouldn't have still prescribed the medication, and perhaps it is what my son needs. I just think some reassurance that he knew about the irregular heart beat, but he felt it was okay because.....(not sure why it would be okay at this point...) But just communicating this with us would have been helpful. 

The results are in, and......

I was wrong! Hard to believe, for me at least. I had really expected to be able to prove that my son was a slow metabolizer of medication and that is why he had so many adverse reactions to medication. I really wanted to have a major, "AH HA!"
     Didn't happen, although I did learn many things, there was no clear cut explanation to his reactions. It took some time and some adjusting before I even took a look at the gene company's web site. I just couldn't get over the fact that I was sure he would show up as a slow metabolizer.....well he was normal on two strains and actually a rapid metabolizer on another strain called cyp2c19. This gene is apparently in the liver and is responsible for converting about 10% of medication. If we had five hundred dollars, (we don't ) we could have done the tests that are not covered by insurance....This could show us a different scenario, but I don't have the money to gamble. I just have to work with the information that I have. So resigned to the fact that I was wrong, I logged on to the gene company's web site and took a deep breath. They have a nice little set up where you can enter your medications to see if you would potentially have a negative reaction. Most importantly, you enter ALL the medications you are on at any given time and you find out that because of your genetic make up you actually convert medicine in a way that may not be very good. That isn't exactly what I found out, however I do have some information that I did not have before. One thing is I found out my son should not take Plavix without very close monitoring because he is likely to bleed more than the average person. Helpful if he ever needs to take this medicine....right now, not so much.
The other interesting fact I learned was about a combination of medicine that my son was on just after he had surgery to drain the cyst in his brain. It turns out that because of my son's genetic makeup when given Decadron (to decrease swelling after brain surgery) the other medicines he was on became less effective. Well, that is interesting. The most important thing to note about this, is that one of the reasons my son had this surgery is because he was having symptoms of diabetes insipidus. This is not sugar related, it is water related. He drank and drank and drank, so then as you would expect he also went and went and went. We were told that the cyst was likely pushing on his pituitary gland making him think he was thirsty all the time. Flash forward to what we know now....Singulair and Zyrtec both cause polyuria and polydipsia.(drinking too much and going too much) They also cause mood swings, sweating, and poor coordination. So for a short time after the surgery, when my son no longer drank like a fish and pee'd up a storm, we assumed the surgery was a success. When he seemed to be able to walk better and even do that neat little finger test the neurosurgeon had asked of him, we all assumed the surgery was a success.... Alas, he developed many other side effects from the decadron and pain medication he was given during his time in the hospital, and his recovery after. These side effects were mis-interpreted by all, especially his doctors. He was then given more medication to combat these new developments. And the snowball turned into a landslide.
     So to recap, the genetic testing showed me that when my son takes decadron it will decrease the effects of the other medication he is on. Wouldn't that lead you to believe that perhaps it also decreased his side effects? It sure makes me think that. I think the short time of remission that we saw was actually just because of this genetic anomaly my son has. Once he was able to rid his body of the decadron and the other medication had time to build back to normal levels we began to see the same old problems rearing their ugly head.
By this time, however like I said, we had discovered all sorts of new problems with our son. I remember saying to the neurosurgeon that my son seemed different. It was like he had sudden onset autism. This is not possible, it just doesn't happen....well back then that is what I thought. Now I have read an article in a medical journal that states a boy who had a brain injury suddenly developed autistic type behaviors. Hmmmmm. This is new. SO you can suddenly develop these symptoms. My son was 5, but he had been realtivley neurotypical before the surgery....I said this time and time again to many many doctors. So did my husband. We just couldn't wrap our head around the diagnosis. Well there really wasn't a diagnosis at first, and some of the things they suggested were more scary than just aspergers. Terms like frontal lobe disorder and other psychiatric terms had me worried that my son would grow up to be a serial killer.
     I no longer believe this, however I do still worry. I worry that he lost nine years of his life to a medicated blur. I worry that this is happening to other children because the doctors and caretakers in their life do not have a clue.
     Reading about all the different medications that my son was taking makes me angry. I see so many clues that the medicine was the problem. I have also read many things that scare me. One of the medications he took at only one month old, Protopic, has been found to cause cancer and they say they really aren't sure of what this ointment does to the developing immune system. Since they have a link to autism and the immune system, this is just down right infuriating. He used this medication for his eczema off and on from one month until he was about four or five. Wow. It says all over the literature for Protopic that it should not be used long term.....I wonder why they just kept giving it to my son? Isn't four or five years long term? I call it that.
     So that is where I feel all of this started. With that one little ointment. Even though there are multiple studies that say Protopic does not cause problems with the immune system, like depleting it, the very same literature will go on to say they aren't really sure what the effects are. Not knowing is unacceptable. Especially if you are slathering this crap all over your baby.
Where do we go from here you may ask.... I am not really sure. We have an appointment with our neurologist. I highly respect this man, and he has done a lot of research for autism. I do not want to loose his support, but what I am about to say to him may make him think I have gone to live at the wacky shack. I want to really really know my stuff before that Thursday appointment. I want to be able to debunk his claims that this just doesn't happen. Of course I want to do all of this with respect and calm quiet resignation. For those of you who know me well, you know this will be a major challenge.
Wish me luck.

Uh....shouldn't you know?

Ah summer....(I guess I am cold and thinking of warmer times...)
I was actually talking to someone the other day about something that happened to my son, well twice. His sister pushed him. Yep knocked him right over at the park and he fell breaking his collar bone! We actually didn't know he broke it until about a week later....again there is that Mother of the Year award....Anyway we did finally figure it out, he had a sling, all was well....except that he brought it up about a thousand times to rub it in to both his sister who caused it, and his parents who missed it. Nice.
Then there was the second time...same collar bone, same cause....sister. This time they were "playing" on the bed. One nice little shove and off he went. He didn't get his hands down quick enough, fell on his head and....shoulder. This time, perhaps out of guilt, I paid more attention. It was however more obvious. A nice little lump right on the bone that wasn't there before.....ewwww.
So off we went to the walk in clinic, (because these things never happen during regular Doctor office hours.) Well this is where it started to get interesting for me. We were seen by a Physician's Assistant. Quite a nice young fellow who started asking my son about what had happened. This launched my son into stories of the first time this occurred, rather than what had just happened. I stoped the "history of sister abuse as told by my son", and redirected the conversation. The next question he asked was if it hurt. Well I jumped right in knowing that my son has a very skewed sense of pain. I am not sure if all Asperger's people are like this, but it either hurts way more than it should or not at all. As I was explaining to the P.A about how my son is I said, "Well he isn't very good at pain. He has Aspergers, so his perception of pain is a little....off."
The P.A actually said to me, "What is that?"
I was shocked, appalled and a little sad. Here is a medical professional in the year 2009 that didn't know what Aspergers was! How can that be? Once I clarified and explained that it is a form of Autism, I had already lost my faith in this person. Luckily for us he sent us to the E.R for further evaluation. For some reason he was nervous treating my son, who had surgery to decompress a cyst in his brain, (something else he seemed confused about) when my son had also hit his head.
I remember thinking, it is not his head! It's his shoulder! UGH! But I guess it is better to be safe than sorry, so off to the ER went went....sigh.
We were taken right back, (thankfully since our ER has lately started to look like L.A County general) The doctor that saw him was a physician I had worked with back in the day....when I got paid for what I do....I digress, so I felt we were finally in good hands. He agreed the "head injury" part of the story was not important and focused on my son's bulging clavicle. He x-ray'd, slinged us and sent us on our way, with a nice referral to an orthopedist. (Who later confirmed a hairline fracture where it had been broken before)
All of this left me perplexed. How could someone not know what Aspergers was? Really. I mean this was someone in the medical profession for goodness sake.
We just assume that doctors know everything, and for that matter we assume anyone who works for doctors know everything. I remember the secretaries at doctor offices that I worked for, who would be answering medical questions over the phone....yikes!
     Later at the college based autism clinic where my son goes to learn to be.....well just to be, I was told about a program where they have parents go forth in the community to impart knowledge about autism. Wow. Sign me up. It turns out we would be talking to cadets in the police academy. This sounded important. I mean really, who more needs to know about this than our police? (besides of course our medical professionals, but hey you have to start somewhere....)
So off I went with a friend of mine to explain what our lives were like, and what they could expect if they came in contact with someone who has Autism. My son is a great learning tool for people because you really don't know there is anything going on with him, until you spend sometime with him. Or I guess if there was a stressful event, like an accident or mommy getting pulled over for speeding...(not that I do this....okay maybe once I was pulled over with my son in the car....ooops)
So these cadets listened and learned and we as parents learned as well. It was wonderful and is something that I hope to continue doing. I can only imagine what an officer would think seeing someone standing in a filed flapping their arms or spinning in circles....drugs. That is what they would think....that kid is on drugs. I am fearful that if my son said or did something weird, (trust me this happens frequently) he would be hit with a taser! Or worse.
Since I began the program I make a point of talking to my son about what he should do and should, for sure NOT do if we ever have an emergency. Really isn't this something all parents should do? I was told a story once about a child who was hit by a car on the freeway because they got out of the car to head back to the patrol car to see what was happening to mom. This is horrifying. We need to educate our children and anyone they come in contact with. Everyone, not just parents of special needs children. Most people do not like to talk about things like that with their kids. why upset them? Well I think of it as giving them information that I hope they will never need. I want my kids to be prepared. More importantly I would like the people in his world to be prepared, and educated. One in every 150 kids is diagnosed with some form of Autism. Get with the program people.....
Learn about this, chances are someone you know has this....

Learning to let go....

So another holiday has come and gone...as I take down the decorations I think about the year that has passed. So many things have happened, some good, some bad, all informative. The other day when I was de-Christmasing the living room so that I could feel a little order in this messy house, my son got teary eyed. He said it was just so hard to see it all go. He didn't even want his hot chocolate in the snowman cup I had given him. He said it just made him sad. I was reminded of years ago when we had real Christmas trees. We would head out to the snow, hunt forever for the perfect tree then chop the sucker down and drag it to our truck. One year we forgot the axe so we tried to hack the poor tree down with an umbrella. This was ridiculous of course but funny to watch. Reminiscent of chopping down the largest tree in the forest with a herring....I am not sure if it was that tree or one from another year, but once when we were done for the season with our evergreen, my husband went to put it on the curb for the Boy Scouts and my son fell apart. He just couldn't imagine letting it go. It had become a part of the family. We tried to explain, circle of life you know...things come and things go....this too shall pass....nothing was working. We ended up planting our tree in the back yard. It actually lived nice and green until about August. This shows we have a serious drainage problem in our back yard, and perhaps that Dad and I are just as big of suckers as our son.
This year I have promised that I will leave our plastic tree up for the week. I am still going to remove all the other traces of the holiday but the tree can stay up, decorated and happy.
     I really don't know why I take down the decorations so early. Once when our daughter was an infant the house was de-Christmased right after the presents were opened.... Bah Humbug.
I guess I just crave order and clean after the whirlwind that is the holidays. My son, who usually likes things simple enjoys the chaos of the season. At least in the safety of his home. He loves the sparkle and glitter and lights and all that goes with it. Perhaps it is his inner Liberace?

This year he did enjoy the family, the food and the festivities in all it's glory. The first year that he was not on any medication. The only time he has ever had all his senses about him. He enjoyed being with family but this year was okay when it was time to go home. He handled the transition like an old pro. I am happy to see this and am encouraged for the year to come. I hope that new things emerge. That we all get to know the new boy, even if he stays on the spectrum, even if he really does have JRA, I think un-medicated he will handle what lays before him with grace.

A very Lego Christmas....

Ron, Hermine and Harry had a great Christmas. So did Sponge Bob, once I built and assembled his home, his friends and his accessories. My son announced as soon as he awoke the day after Christmas, that he wanted to build all the Lego sets he received. I agreed and we took up our positions on the rug in the front room. Thankful this year was light on Lego sets I began to dump out the bags and sort through the pieces. My son LOVES to put the people together...so do I, but since it was the holiday's I let him. It was shortly after this that he wandered off. We had Gary and Sponge Bob and Patrick and a pile of Lego bricks. He lost interest. Usually we work as a team until the item is complete. Yesterday he just didn't have the desire. He wandered around, asked Dad for breakfast and left me to build alone. Should I have stopped and waited for him to return? Probably but I have a Lego Problem. I can't stop. Once the little pieces are there in front of me it becomes and unhealthy obsession. I have to complete the set. I have been known to take pieces away from my children so that I could build what ever it is we are working on....sad.
The reason the Lego distraction bothers me, (both mine and my son's lack of...) is purely concern for his concentration. He doesn't seem to have any. This is how we knew, in the past if his medicine was working. He could stay focused on a project. Now he is like a wandering minstrel. Bouncing from one thing to the next. Unable to enjoy his own toys. Will this change over time? Will we resort to medication again to help him focus? Can you teach this sort of thing? It isn't just Lego's of course, I worry this is the benchmark for other things. If he can't sit and complete something he loves, how will he have the ability to sit and do school work? I hope that over time he does regain the desire to sit and work on something. He is so happy now, maybe it will just take time.
     I am remembering however the time he walked in circles around my table and asked me to put together his Legos. He just couldn't stand the thought of sitting with me to complete them, yet he really wanted to see them put together. Later on medication he would play for hours in his room or with me building and enjoying.
     It is hard for me now, once an advocate of medication for my son. I have to pick out the parts of his behavior that may cause him trouble in the real world. Knowing how he can be makes it worse. Perhaps if we had never tried medication. Or if I had not ever heard him say to me that it is nice to be able to focus and play with his toys, I would not even consider medication again. I know what it is like since I take medication for my own ADD demons. I know how frustrating it can be to have ten different projects started and none complete.
      We see his neurologist again in January, and of course I wanted to parade my son around and show the doctor how perfectly normal he is now. This may not occur. My son likes to make noise, do this strange new dance and can focus about as long as a gnat on crack. I may not impress on this doctor how much my son has changed if he is standing on the table saying, "woooop! Wooop! Wabing wabing!"
Of course I would take that over last time where he was UNDER the table in the fetal position rocking back and forth because a child in the next room was crying.
That was just sad.
     As I have said, I guess I just need to learn who my son is. I have to let the oddities appear and run their course. Maybe he will grow out of these new behaviors. Maybe things will all settle down. I know that his DNA test will be done this week. We will finally know how he processes medication. Perhaps there will be one that he can take and benefit from if that is what we decide. If he is on medication that takes away his lack of concentration but leaves in tact who he is ...well that would be fantastic.

Not everyone loves the big guy.....

This is, by far my favorite picture of my kids. I love everything about it. How my daughter is smiling, how my son is terrified....How the Santa doesn't seem to care about anything....he has this glazed over look in his eye....did that happen because of my kids or was it the countless that came before?
Oh well if you can't have at least one picture that is worthy of that famous web site, Awkward Family Photo's....then that is just sad.
My son was only about two years old in this picture and that would make my daughter five. I look at this now and think how telling this would be of our lives. My son in distress, my daughter oblivious and adults with glazed over expressions in the middle.  I am not saying that my daughter is heartless, by all means she is the nicest person on the planet. This can be verified by all that have met her. However when it comes to her brother....well this must be true of all siblings, but I only have these two kids so I don't have much else to go on. I know my brothers and I did not get along until we reached adulthood, and even then sometimes things were tense. Perhaps that is why I hoped for more from my kids. They would not only get along, but LOVE each other....
Que corny music.....
I think this quick snapshot, taken at a random mall, should have been fair warning. Things were going to happen, things that would upset my son, and not even remotely affect my daughter. She is often in need of reminders as to why her brother is the way he is, and how we all need patience and kindness and in his own home, he should be allowed to be as weird as he wants to be. We all need this reminder.
I am also reminded of a story that was no where near the Christmas season but it played out just like this picture. We were on our way to a local ranch for their annual Threshing Bee. It was hot and my son began complaining of a horrible headache from the back seat of the car. I was alone driving them and asked him how bad it was. He said it is really bad and in fact he was about to throw up. I, acting quickly grabbed a bag of food that we had packed, dumped out the contents, tossed the bag into the back seat while navigating the car safely to the side of the road. (Mom's are cool like this)
As I am doing this I can hear my son wretching into the bag I had just handed him. Poor kid. When we were at a stop and I turned around, I see my son, holding his bag, wiping his forehead and my daughter gazing out the window....She looked over at me and said, "Oh are we there?"
We were, as I said on the side of the road. Out her window was a stoplight and not much else.
I looked at her in surprise and a bit of disgust..."No, we are not. Your brother just barfed! How could you miss that?"
"Oh," she says, "I was just zoned out I guess."
So here was this moment when I realized not much affects her....or she is in some kind of coma....not likely, but I could not believe what had just happened. Once my son was all cleaned up and reporting no more headache we were on our way to the Threshing Bee. We didn't stay too long. I was a wreck. My kids were fine. One oblivious, and one had just simply moved on....
Wow.

So now when I am at the Mall or where ever I see kids lined up to take a picture with the Big Guy I look at those in line a little different. Does how we handle a picture with Santa really predict the future? It sure did in our family.

We wish you an OCD christmas.....

I am not sure how other people celebrate holidays. I know at our house things have always been....interesting. My son, with his delightful personality tends to be a bit....OCD when it comes to his toys. My daughter hates toys. She always has. Well ever since that darn Barbie lied to her. She watched a T.V commercial during the holidays about a particular Barbie that had wings and would fly around....We all know that Barbies do not fly. (except in my nightmares) My daughter however believed the commercials. She asked for the Barbie, we obliged. When the big day arrived and Barbie was in her little hands the joy quickly became frustration, then tears. I didn't understand! Did I get the wrong doll? Is she the wrong color? No mommy, the darn thing doesn't fly. The next time the commercial came on I watched it more closely with her. "Look sweetie see the big man hand making Barbie fly?"  I explained. She was upset. There was not a way to fix this, Barbie was destined to be at the bottom of the toy box.
     Once that lesson was learned by us, the adults of the family, I took more precautions when asking her what she wanted for Christmas. There was a lot of explaining, and going over commercials with her debunking the claims. I think she still hates toys but we have a better grasp on why.
     My son? Well he loves toys....a bit too much. He becomes obsessive. To the point, really that if that toy isn't under the tree, we would ALL be sorry. Now I realize this makes him sound like a "brat". That is not the case. If it is his Aspergers or one of the side effects of the medications he was on, there was no stopping the desire. There was the year he had to have a robot, then the next year it was R2D2. These things are now high up on his shelf. He loves them, everything about them. We don't love that they consume batteries at the rate of a billion an hour.  He played with them constantly, he enjoyed them...now he says he is waiting until he has the expertise to reassemble them into one big robot.  Some day I bet he will.
   He has moved on to Lego's. Thankfully this is something we all enjoy. The sets are fun and easy to build....unfortunately they do not stay built.  Jaba the hut's ship was one set that took me personally two days to put together and about three seconds for him to take apart. He said it drove him crazy that it was assembled. What?
Now I look at set's as parts like he does, it isn't the whole thing he sees.... he recognizes the pieces as more valuable than the set put together. He amazes me. I can pick up just about any piece in his Lego tubs and he can tell me the set it came from. He has asked once or twice to reassemble the sets...we have all the instructions but the pieces have long been mixed with others, and the hunt for that one little piece is just too much. For me and for him.
     This year, he has not really asked for anything. He has here and there said, "Oh I want that for Christmas." But it is different this year. There is no obsession. There is no talking constantly about the item. Its nice in a way....but different.
     I remember Christmases past where I knew he would be ecstatic because we have made sure that perfect gift is under the tree. This year is a crap shoot. I hope he will be happy, I hope my daughter will be too. I know that I tried my best.....and that is all we can do.

The School System for us.....and the rest of them......

I've heard from a couple of people about how the school system is for them. They either have a child with special needs, or are just entering into the testing phase. One of my friends has a two year old who may or may not fall on the spectrum. Since she was a teacher before becoming a mom she knows all the in's and outs of the "help" the school can provide. My son goes to a college based Autism Clinic. They are wonderful. They have taught him to ride a bike, play games, interact with other kids and in general have fun. The people who work at the clinic are students, so sometimes in the room where I wait there will be a few of them studying or doing reports. Once I saw one of their books. It was on IEP's. For those of you who do not know this is suppose to stand for Individualized Education Plan. I have come to learn it really means, Its Endless and Painful.
I have not met a parent that comes out of these happy. The book, I guess it was their text book for a class, explained how the IEP works, how it is there to help the student and parent get the most out of the education system.....I wonder if the schools have a copy of this book? Maybe I will send it over....
We started out with a "student study team meeting." This was brought on after a phone call where I was asked to come and remove my son from kindergarten. Apparently he was very very upset and was causing problems. He already knew the information that was being taught and did not want to be told the same stuff again thank you very much. When I arrived I received my child and a hand written account of the events that occurred. It was like a murder had taken place....
9:45 your son stood up and yelled at the class
9:50 your son walked to the door and would not return to his seat
9:55 your son tried to escape out the back door when we tried to escort him back to his spot at circle time...
I checked for crime scene tape around my son, there was none.
I began to feel that perhaps this teacher and my child were not a good match.
Shortly after this encounter she talked to me privately and told me it would be best if I could get my son to stop crying so much....you see children really don't like boys who cry. She honestly said this to me.... I can't even make this stuff up.... Well I could but I swear this really happened!
(This was after my son had surgery on his brain to drain a cyst that sits in his left temporal lobe. We also know now that he was under the effects of the medications like Decadron (a steroid used after surgery to prevent brain swelling) The side effects of this medicine include flat affect mood swings personality disorders and depression. Wonderful. Of course the doctor did not warn us about this and acted completely surprised when we said our son had changed....I digress....)
My response to her request was.... well the one in my head was a lot different than the one that came out, thankfully....
I told her that my son could cry anytime he felt like he needed to, and I printed out and gave to her a bunch of information about head injury and recovering from brain surgery. I also had the school R.N go and talk to the class when my son was not there to educate them a little more about what was going on.
Did this work? Well if my life was an after school special it would have....
Instead on the next "assessment" my son had I noticed that the person wrote at the bottom of the form, my son's problems were in no way associated with a head injury or recovering from brain surgery....she figured that out in the half hour she spent watching him play on the rug. Great.
So on it went, and we tested, and assessed, and looked at how he did at different things all free of charge to me, a service provided by the school system. How nice.
Well sort of.
I also had him tested and looked at by the Regional Center. ( also a free service) They do this for a living and actually want to help people. They aren't trying to cut costs or save money or make little boys stop crying because it just isn't cool.
The bottom line was that in Kindergarten at least, my son didn't need any "extra" help. We would revisit the situation next year in first grade and see how he is doing then....hurry up and wait.
This is very hard for a person like me. I want answers, solutions and I want things fixed.....NOW.
It was hard to wait, hard to hear that we would just have to see how he did....
I was however hopeful that having a new teacher would help. Someone who maybe understood him a little better.....
Sadly this just wasn't going to happen in the first grade either....
Poor kid.
You do have to know what the system is suppose to offer or the school will not give up anything. It all costs money. No Child Left Behind? Well that left skid marks all over my kids.....I am sure in it's purest form there was a good idea. By the time it reaches me however.....sigh.
watch him in class to see if he needs a one on one aide....
We have been through all of this before. I am always torn, because I want him to do well. I want him to improve. But what if they catch him on a good day? What if he needs this stuff and they just miss it?
Then I guess I go back in and fight again for what he needs.
You'll recognize me....I'll be the one with the boxing gloves and the police tape slung over my shoulder.....

The care and feeding of a nine year old boy......

I have never been good with boys. They do strange things. When my daughter was in the second grade she wanted to invite her whole class to her birthday party. I agreed. When the boys arrived they, for a reason unknown to me, all ran and jumped over my couch. I was horrified. One of the boys mothers ( once she stopped laughing at me and the expression I had on my face,) whipped the boys into shape. Apparently this is what boys do.... they run and jump and play and are loud. At this point my son was about three. He was calm and sweet and quiet and thoughtful and not at all like these boys. There is nothing wrong with the loud and rowdy type, let me just say that now, I just was not accustom to the behavior. My daughter and her friends were very calm in the way the played and how they interacted so being around boys was a bit shocking. As my son grew he was by no means a "typical little boy". This has never been a problem, and like I have said before we did not know right away that he would be labeled "on the spectrum"
While the cause of all his symptoms is still under investigation the point is still clear that my son is and always has been very different that his peers. Well now, suddenly with out these medicines coursing through his veins he is slowly becoming a different person. He is turning into....a ......boy!
Yikes.
I am not sure I know what to do.
I looked in my desk drawer where I keep all my owner's manuals and there were none for my children. There should be, Someone should tell parents what to expect. Actually that might deter a few people from this "adventure". There have been more than a few days where I have thought about turning in my Mom Badge..... I don't think you can do that. I always threaten to run away to Istanbul with my dog Maggie. The kids know I am bluffing. I don't have a passport.
My husband is better with the children than I am but I think it is because he doesn't have to be with them all the time. He has a job away from home. He gets to leave, almost every day. He has all of these great suggestions that are fair and even and level headed and he never ever makes fun of the children. I do that. All the time. They usually deserve it, and it is usually pretty darn funny, but still....I am their Mom....probably shouldn't make fun of them.
So back to trying to figgure out how to raise my son. How to help him get the most out of his life. What I realized is that we were avoiding social situations as much as we could. As I was taking my daughter to a play date the other day, my son said, " Wow. I never have those. "
I pointed out that he doesn't really like people, and that he tends to yell and them. He said good point and we both laughed.
But as I was driving my daughter over to her friend I thought about how I never pushed the issue. I never set up things for my son to do. I just let him become a recluse, a hermit at nine. A would be uni-bomber because it was easier than dealing with the embarrassment of my son yelling at another child. Maybe he would be better at social things if I had tried a little more. Maybe not, but self blame is something that most parents are pretty good at so I do this every now and then. I am determined now to get him out there more, have him fail.  That is something I was never good at. My kids perhaps do not know how to clean their room because I was not good at letting them try and fail and try again. I would send my daughter in to clean her room and check on her a half hour latter only to find her staring at the wall drooling. This made me so frustrated that I gave up. I was not willing to have my curtains sucked up into the vacuum cleaner or the wet towels shoved under a bed to mold and rot so I just did it myself. This has, when they were younger worked okay. Now that they are getting older and requiring more and more....well it is clear I can not continue. I must have them do things for themselves. I must have them fail. I can't watch. It is not that I don't want to see the disappointment in their eyes, or the frustration, it is just that well, I am a perfectionist. I want it done right. It bothers me that my daughter loads the dishwasher yells out, "It's Full!" and walks away.....there are three things on the top shelf and a plate laying face down on the bottom shelf and a sink full of dishes that could have fit in the dishwasher......AUGH!
My son has had chores too....we have tried. He is on "Poop Patrol" for our tiny back yard...we have three dogs....he does a terrible job. I would have fired him long ago. Mostly my husband just picks up the poo or mows over it, or the big dog eats it....I'm not really sure. I just stopped going in the back yard.
It is easier that way.
Perhaps I will go and stay with another family for awhile to see how they do this. You know how they have exchange students from other countries.....perhaps I can be an exchange mom. I can observe like a field biologist.....
Do a documentary on the family.....

I could just read books on the subject. I know they are out there. I was told by one of the people who assessed my son of this great book called, "Smart But Scattered" It was all about how executive function is not fully developed in children and this is what causes their organizational problems.....It was a great book and I read the first chapter, then I lost the book....seriously.....
Are you seeing a trend here.
Well.
Perhaps my kids are the ones who need the owners manual.
The care and feeding of a scattered mom?
If they write one I will let you know.
And If I ever find that book I'll let you know....maybe it had some good tips....

The shock of it all....

It is slowly sinking in, what has possibly happened to my son over the last nine years of his life. Today as I took his DNA to the post office I thought what would change once I had the results in hand. What if it comes back normal? If he really doesn't have some freaky genetic problem that causes him to process medicine incorrectly? Well....would I believe that? I am not sure that I could any more. The responses that I have gotten when talking to people have been interesting. Yesterday my son had two doctors appointments. One was a routine appointment with his eye doctor. He wears glasses and has to have his eyes checked regularly because he has....(or we thought he had) Psoriatic Juvenile Rheumatoid Arthritis. This comes with a horrible risk of something called Uvititis which can cause blindness. YIKES! Let me tell you, every time my son told me his eyes hurt I was pinning him down and checking for that tell tale ring around his eye that would indicate the worst had happened....Well thankfully it never did.
My son was diagnosed with Psoriatic Rheumatoid Juvenile Arthritis in January of 2008. He had just been seen a week before with problems of increasing behavioral issues at school, and tics...he was pulling his hair....constantly. Just the front. He did it so much he had a bald spot...So sad. The doctor also notes in this visit that he had over break forgotten how to write his letters....I remember that. I remember calling his neurologist, saying there is this major problem, he can't write any more....remember this is January....we got a MRI scheduled for....MAY. Nice.
So let's see what cocktail of medication was my son on at this point?
Abilify 5mg in the morning and 1/2 at night
Strattera 25 mg in the morning and 10mg at night
topamax sprinkle (10 mg)
Zyrtec 10 mg
singulair 5 mg
So let's just take a gander at some of the side effects if we can even bear to.... I almost can't.... But I must. I have to show you.... Seriously I have to show the world remember this is when he was diagnosed with JRA. ( a very serious life changing illness)
Abilify lists as a side effect....joint swelling, decreased range of motion, arthritis, rheumatoid arthritis, localized osteoarthritis. OK well I just have to paste the whole list because it relates to possibly why he couldn't remember how to write his letters....Again....not one person said...."I wonder if your son is having a side effect of the medication...."

Nervous System Disorders: Frequent - lethargy, dyskinesia; Infrequent - disturbance in attention, parkinsonism, dystonia, drooling, cogwheel rigidity, dysarthria, paraesthesia, hypoaesthesia, loss of consciousness (including depressed level of consciousness), hypersomnia, psychomotor hyperactivity, balance disorder, cerebrovascular accident, hypokinesia, tardive dyskinesia, memory impairment, amnesia, ataxia, dementia, hypotonia, burning sensation, dysgeusia, restless leg syndrome, hypertonia, Parkinson’s disease, akinesia, dysphasia, transient ischaemic attack, facial palsy, hemiparesis, myoclonus, sciatica; Rare - bradykinesia, coordination abnormal, cognitive disorder, syncope vasovagal, carpal tunnel syndrome, hyporeflexia, intention tremor, muscle contractions involuntary, sleep apnea syndrome, dementia Alzheimer’s type, epilepsy, hyperreflexia, mastication disorder, mental impairment, nerve compression, parkinsonian gait, tongue paralysis, aphasia, choreoathetosis, formication, masked facies, neuralgia, paresthesia oral, parkinsonian rest tremor, cerebral haemorrhage, dizziness exertional, hyperaesthesia, haemorrhage intracranial, ischaemic stroke, judgment impaired, subarachnoid haemorrhage.

I just highlighted the ones that stood out as obvious to me that he was having at that moment besides the joint swelling....
The other medications have similar side effects so we are layering these on top of each other in a kid who just can not handle it.
The eye doctor did not surprisingly shake my hand and congratulate me for my amazing discovery. She was pleased that my son is no longer on all the medications. I think most people were alarmed at best when they would see his medication sheet, but she did not seem to believe me that he had been affected the way I explained.
Is it just too much?
Is it too hard to accept?
I know I did not believe his medicine was causing his problems. Like I had said even when we found one medicine, Singulair was causing him to be very very depressed, I did not wonder if the other medications he was taking were causing him harm.
At our second appointment of the day the pediatrician was patient and kind as he listened to my story and signed the paperwork necessary for my son to have the DNA test. He asked what I was going to do with my life when this was all over. I think he must worry that I am a bit obsessed. Perhaps I am. Who doesn't want the best for their kids? If it means becoming a private investigator into your child's medical history then, well I guess that is what you do. I always knew something was not right. I always knew there was more. A well meaning school psychologist once told me what she thought my son's IQ was. They have never been able to get an accurate IQ because his processing speed is so slow. She gave a number that I thought was far lower than where my son actually is. I laughed. "Oh no..." I said, "My son has a much higher IQ than that!"
She told me, "But that is good, that is average!"

I am sure she thought I was "Just one of those Mom's"
I don't really care.... I will not stop fighting for my kids to be all they can be, and neither should you.

192 hours without drugs.....so what's new with you?

Day one.....went well, perhaps it was the excitement of starting on a new adventure. Trying something different. He went to school, came home all was good.
This might go better than I thought....
Day Two....Headaches. Are you kidding me....all day....not just little ones, bad ones and the kids at school? The worst possible people on the face of the earth. (not really but coming off of drugs apparently makes you feel this way)
Day Three....headaches still there....still hate people. Why does everyone have to be so loud? Salt cravings made him eat almost a whole bag of chips.....this is worrisome....

Day Four.....perhaps we made a mistake....these headaches are horrible....and the kids at school are surely sent from hell to torment my son. I think this is the day I brought him home early....call it a "mental health day" we all take them....he deserved it....he was dexoting after all....
Day Five....Okay I am about to call Betty Ford and see if they have an open room. This is awful. My hope was that his "symptoms" were actually "side effects"  yet I find myself wanting to medicate him just to calm him down....he is climbing the walls....I decide to start drinking alone in the laundry room instead. This helps. It would be better if the door had a lock....will look into this.....

Day Six....the weekend...who in the heck decided to take away this kid's medication on a Monday? Oh yeah....that was me....I am not so smart sometimes....perhaps the laundry and I will become friends over a martini on a regular basis.....
Day Seven....and then there was rest....and God said, "let him be calm and happy and play forth with Lego's and have not a headache today." Okay well God didn't say that but since it happened on a Sunday and it was a miracle to me I just could not help myself....
Day Eight....today.....sent him off to school....fingers crossed and breath held, (flask of whiskey clutched in my pocket just in case....for me not him....) one hour, then two went by and no phone call from the school.... I sighed a bit of relief when lunch came and then passed and no word from the office asking me to come and help with my poor child.... and then it was time to fetch the children. I arrived waiting to see his grumpy face as I had for weeks now. He threw his back pack at me and said, " Can I stay and play a few minutes? I'm not ready to go yet!" ....and then he ran away....towards the play ground....
he ran away.....happy....to play.
wow.
Seriously.....wow.

Will we stay on the spectrum?

Asleep. Deep in dream land. Here is my son. Like all parents I take pictures of my children sleeping. I sneak in their room while they sleep and stare at them. Perhaps we do this because they are still, and angelic. They are like we remember as infants. they are not asking for things or fighting with their siblings. They look so innocent. They just are.
Sadly over the years there have been times that I have worried that I would go in and find my son gone, just slipped away in his sleep. Do all parents feel this way? How awful this feeling is as it creeps in on you when you tip toe over to their bed. I thought it would pass as they were no longer infants, but with all of my son's medical problems that feeling has never really gone away.
I think it may now. I think we might be on the true road to recovery. This road is new to all of us. It has us questioning things that have been our foundation. It has us getting to know our son for who he really is. It has me trying to not take all the blame.
My son began taking medication of some kind when he was just one month old. He had really bad eczema. So the doctor prescribed some ointment. We used the ointment. Then we gave the vaccines that all parents do. (no I am not against vaccine, just be patient with me and my story....)
So like I have said, I have all of my son's medical records, I have the benefit of seeing the pattern. We would give him a new medication, he would get sick. We would take him back to the doctor with this new "symptom" (that was actually a side effect of the medication) and the doctor would then give him .....a new medication..... sometime he would tolerate the mediation for a little while before having the side effects. When we would take him to the doctor there was never any discussion about medication side effects.  The ointment I was slathering all over my one month old baby had all the side effects listed right there on the insert of the symptom that I had taken him to the doctor for, nausea, vomiting, weight loss, skin boils, secondary infection....
It makes me sad that we just kept him on these medicines and piled more on top of them. Now before I go on and make all of you want to throw away your prescriptions let me explain something. There is a reason this is happening to my son. A reason I plan to prove, by science, because that is how I roll. I am having him tested for a DNA problem of breaking down medication. It is called being a poor metabolizer. Not everyone is like this. Most of us are just fine. I still take my medication, I still give my daughter her medication. Nobody panic!
However, my son......well I sure wish someone would have caught this.....9 years ago.....or even 5 years ago. Two of the worst offending medications that he was affected by was Singulair and Zyrtec. That is right. Allergy medication. You have seen the ad's on T.V for these and they do warn you of the side effects, well the "nice" ones....
I have mentioned that when my son went into kindergarten he was saying things to people that were, well.....not so appropriate.... well he was also anti-social, emotional liable, moody, angry, sensitive to loud noises and oh so very thirsty. He would drink too much and therefore urinate too much. He ran like a little old man and was very uncoordinated. He had a very hard time regulating his body temperature. All of these things had us very concerned. As parents we thought there was something seriously wrong with our boy. Wouldn't you?
Now are you ready for this?
Seriously?
Do you want to know the side effects that are listed for Singulair and Zyrtec?
It may make you angry.
It sure made me mad.

Singulair- Aggressive behavior, depression, irritability, restlessness, headache ( there are many many more but these are the kindergarten side effects...he went on to develop more of the other side effects as we increased his dose)
Zyrtec- Micturition frequency(urinary frequency) , polyuria(also means urinary frequency), urinary incontinence, dehydration, thirst, muscle weakness, abnormal thinking, agitation, amnesia, depression, emotional liability, impaired concentration, nervousness, paranoia, sleep disorder, abnormal coordination, hyperkinseia( over active hyper), migraine, visual field defect, leg cramps confusion.
So .....
Why didn't the doctors look at the medications he was taking? Why didn't SOMEONE look at all the side effects and say WOW this sure seems like your son is having some problems with these medications.
While on these medications my son was tested for many things and diagnosed with many many problems. Not one of them being drug intoxication.
If you suspect that you are reacting to a medication, please talk to your doctor. If you suspect your child is reacting to a medication TALK to your doctor. If this seems to happen all the time, consider getting tested for the genetic defect. There are many labs that handle this. We are using Genelex.  They have a web site you can visit to find out more about this test.
www.healthandDNA.com
My son is now medication free for 5 days. It has been a rough 5 days. Headaches, crying head banging, (Oh wait that is me.....)

The other day he counted by two's all the way to 20 for me without stopping. This is something he could not do just a few weeks ago. He thinks he could. My husband pointed out, that he probably was doing it in his head, but just couldn't get the words out.....how sad.