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.....

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.

Crowds, Christmas, Crouching, Crying, How do you cope?

Ah.....Christmas Preview in our town....the smell of hot apple cider, the ringing of the bells, the hustle and bustle of the holiday season. Years before my son enjoyed this little holiday ritual. Look at the picture above for proof. There he stood watching the pretty Nutcracker Ballerina dancers in the window of the antique store, one of the traditions at our preview....people bumped him, stepped on his toes, walked in front of him and probably even spilled hot chocolate on his shoes. Not one tear. Just excitement at being downtown at night. With people. With Santa. With his family.
     Last night we ate an early gluten free casein free diner and set out to enjoy the festivities. Happy the rain had decided to hold off. We were all eager to hit our favorite shops. We even got a prime parking spot as soon as we arrived! All good signs for an evening that was sure to be filled with holiday grandeur. 
Walking through the first building we noticed a slight apprehension building in our son who was trying his best to hold it together.  To us the noise level was minimal. (To him it was a crescendo of shouts and rings and laughter evil in nature forced into his ears. He began to whimper.) We coaxed him along. Come on son, it will be okay....lets just get out side.
Finally out into the street. For us fresh air and wow, slow night, usually this preview has the streets packed with people rows deep. (For our son, massive amounts of people pushing and shoving against him touching him, loud and angry noises hitting his ears, and lights flashing against his eyes making it hard to see.)
Our daughter spotted a friend  dancing in the store front window and we stood talking with her father glad to re-unite with an old friend from grade school. He said his daughter was doing really well in her new school and asked how our daughter was doing in her new school....typical talk of the reunion....(Our son forced to stand in the busy street tried to shield himself from the noise and movement that was going on around him. He tried to understand why we had stopped. We had said we were going to the candy store. Now we were just standing there in the middle of the street! )
Finally I realized that he was melting down and asked dad to take him to the candy store, we would meet them there. After gathering said daughter and navigating through the crowd we arrived at the store of every child's dream. This candy store is amazing! Of course not durring Christmas Preview....waaaaaay too crowded....
Our son did not enjoy his time in his favorite store. I decided ear muffs were in order after he crouched down and grabbed his ears in frustration at the noise level. This was found and purchased at the next store in the form of an aviator hat. Very cool. Did it work? Not really. Why didn't we just go home? Well after about two more stores and three more melt downs we did. Funny thing is, on the way back to the car, when my son saw the comic book store, he wondered out loud if we could all go there. I said no. My nerves were shot.
The ride home was very silent. He was sad that he ruined the preview for all of us. So were we. I was sad that we, perhaps may never be able to do things like this as a family.
Later that night when we had all calmed down, I asked how we are going to handle things like this in the future. Would my son like to stay with grandma next time? He said no. He would just go as a bot. He would stay home, but send himself like Sheldon on the Big Bang Theory did.....Sheldonbot.....you need to watch the show.....Very very funny. And there you go. That is my son. He doesn't want to be left out. He doesn't want to miss anything, even if it is incredibly painful for him, and for us. Where does that leave us? Going to huge events with a kid in full melt down who is throwing himself on the floor and covering his ears? Someone is going to call CPS one day. I don't know why he wants to be there when it clearly causes him so much distress. This is for sure one of the many mysteries that is my son.

Never say never or you'll eat your gluten filled words.....

So Jenny McCarthy has never been high on my friend list. I have not read her book, I do not tune in when she is on Oprah. I do think she is funny, and hey she is quite a looker....but when she started telling everyone her son was "cured" of his autism now that he doesn't eat gluten I decided she had lost her mind. I have never gone over to that camp. Never believed that what went into my son's mouth would cause his behavior to change, or his mood to alter. That being said I must tell you I am a huge hypocrite. I medicate my son. I strongly believe in the pharmaceuticals wonders that I give him each and every day. So again I refer you back to an older post where I stated I am not up for mother of the year. This picture of my son, shopping naked in my pots and pan cabinet is to show the large hives he had all over his body after his dear mommy gave him Lima beans. Knowing full well he was allergic to peanuts, but not knowing the Lima bean and the peanut are actually quite related. Live/learn/nearly kill your kid....
So this was just after one of many allergy panels my son had and well before we knew that he was somewhere on the spectrum. At this point he was only suffering from horrendous allergies. His skin looked like a burn victim and his nose was in a perpetual state of boogerdom.  What we though was reflux was actually his poor belly rejecting all the soy based formula I was giving him....because guess what soy is like? Peanuts! Right! All in the family called Legumes.....so we learned a lot and started to give him whole milk and things slowly got better, then would get worse again as he would develop new allergies to the new things we would give him. Now at age 9 my son is allergic to just about all grains, including rice, (seriously) and milk.
We continued to give him these things.
I am going to just let that sink in.
We got the blood tests back, the doctor told us the things he was allergic to and we said...."well what else is he going to eat?"
and....We continued to give him these things.
I am going to go open the door so that Child Protective Services can come and take me away......
So now he is sick. He is loosing weight. He has headaches almost everyday, he is throwing up and he is yelling at the kids in his class because he just can't handle the noise.
Our new pediatrician suggested the GFCF diet. This means no gluten, no casein no dairy. My son is pretty sure we are going to feed him pellets. I assured him we wouldn't. He is allergic to pellets.
So we will do this diet, and see if it works. The whole family is going to change the way we eat, not just our son. Who knows maybe my daughter will stop being so weird. Perhaps my ADD will get better....maybe just maybe I will have to write Jenny McCarthy a letter of apology....