That dang cancer and words we should all take to heart.

              I did not write this. This is an email I received today from an angel in my life who has been fighting cancer for a long time. Not to long ago she told us all she was no longer going to spend her days sick and miserable, but living the rest of her days taking life in the best way she could. I wanted to share this because we take for granted the life we have everyday. Here are words from someone who is truly taking in life on a daily basis because she knows her time is short. Read it, feel it, and believe me every word is a lesson. We all have our battles in the world and if we are lucky we can have this view on life while we tackle them. My love to a wise and amazing women!

Dear friends, support group, Trusted confidants and THOSE OF YOU WHO DON'T
Really give a damn but put up with my updates anyhow,

Over the last four months, life has changed once more. I'm leading a pretty
amazing life for someone who was given six months to live in September.
However, I did find out that is more an arbitrary time frame used to get me
in hospice care as soon as possible and not a true time frame. No one
really knows how long I will be around to irritate you all.

I have the best friends and my siblings have been coming through for me
these last couple of months. A mild fall with beautiful golden colors made
sitting in my nest an amazing visual feast. Life has been good.

I've had lots of time to think and consider the great mysteries of life.
I've decided there are no answers to any of life's questions and that's
where faith comes in. I have faith that the cardinal will lose his
brilliant red color, the gold finch will turn a drab olive brown, cold
weather is on its way, and that if we look for it, we are constantly
surrounded by the most amazing world.

I also believe that no matter how hard we try we can never please all of the
people all the time (however, that is still under advisement by a few poorly
informed types), we can please some of the people some of the time, and we
can please some of the people NEVER!!!! That one I know for a fact. And
so,my new outlook is that the only person we can really "please" is ourself.
Trying to please anyone else is pretty futile!

The rewards of truly loving and supporting our friends are astronomical!
So,for those of you who have decided I am an old woman without a lick of
sense, just pretend that I got into my Long Island Ice tea and that Madeline
and I are having a limitless party. (It's Lue's fault! That lady knows her
wine!)

For those of you who really care, I can't wait to see you again.

Meanwhile, my heart goes out to my sister who lost her husband on Monday but
is still unbelievably blessed with two sons, two daughters-in-law and three
grandchildren. Would that we were all so blessed to be surrounded by love
in all those really difficult times.

Meanwhile,remember, cancer isn't all bad! I can eat whatever I want,
whenever I want even though I can't taste much. But for those of you who
live in MN or own a plane, there is a bakery that moved down from
heaven,literally and set up shop in Plymouth with a second shop in Anoka
called Truffles and Tortes. I think I' walk barefoot through a blizzard to
get one of their raspberry tortes. Now, there's something worth dying for!
Of course, that is next to my sister-in-law's rice pudding, my sister's
"fresh lefse,". Brandy's caramel pecan rolls (which I'm told are as good as
my mother's ( a fact she still has to prove to me), all of Harriet's
cookies, which are being known in a five state area, my brother's jams and
butter bridle candy, Bruce's pearl onion dish, heaven is just a mouthful
away. Of course if you are blessed to life in fish and shellfish country,
you are already too blessed for your own good! Dungeness crab, halibut,
smoked salmon - you guys got to learn to share the wealth! You are already
living in heaven, after all!

Arlo, Mikey,Tasha, Widget continue to thrive and survive. We are all growing
older but I am so glad I'm not living with a thirty year old hunk of burning
love. I couldn't keep up!

We are doing great here! I got a high-class purple walker which doubles as
a chair on occasion. I'm trying to find the wooden cane Arlo made for his
Mother, and maybe at some point, I might need a wheel chair and all those
embarrassing bathroom accouterments.

Meanwhile, know that Arlo and I laugh and enjoy every positive moment we
are given,

There is one favor you can do for me - give one another a lot of love,
forget about past mistakes once you've learned whatever lesson you BOTH
needed to learn, and try your best to treat others the way you want to be
treated. Old ladies get to say all this stuff because when everything is
said and done, " all we need is love (and a big mouth)!"
(cue Beatles)

Love
Jeanette

P.S. I don't know if I'll be sending out another update, but even if I do,
you do NOT HAVE TO READ THEM. God willing and the creek don't rise, I might
even have something interesting to write about sometime in the near future!

Reply

Vice grip on a little airplane.....and a show of emotions

                 Sitting here tired as ever from two very long days but I don’t want you to think I am complaining because I am also sitting here trying to digest all of the fresh caught king crab we just devoured. I earned this feeling and it’s a good one!

                Yesterday Phillip and I left for the Spokane airport to pick up dad. He has been away for work for the last three months and it’s been this way for a while now. We stay at the same hotel each time so Phillip does recognize now what this hotel means and it means daddy is going to be here. He also knows the airport and loves to walk around taking everything in. Luckily dad usually comes in late at night so there is lots of room to run and wander around. This flight happened to be coming in at midnight and Phillip would not and could not sleep. He knew what was coming and refused to miss it.

                When a toddler is clearly excited for his dads return and knows what all of these signals mean you would expect a certain reaction from him when the time finally came. Not the case with Phillip at all. He is excited and he is happy but at the same time the transition hits him hard and he can pull back a bit to take it in slowly. Then all of sudden or maybe a day later…he has finally taken it all in and completely at ease.

                This trip gave me some clear understanding of what is really going on with him as far as how he feels. Autism makes this really hard to figure out sometimes because he pulls back. That can be mistaken for not feeling and I know that is not the case or even close to it.

                Daddy snuck up behind Phillip this time and put a toy airplane in front of him. Phillip has an intense interest in flight and loves airplanes so dad wanted to surprise him with a new plane to play with. When the airplane came into play nothing else mattered and it was a long slow walk across the airport with Phillip creating propeller sounds and practicing his flight patterns. It seemed as though dads arrival went unnoticed but the vice grip Phillip had on this plane was one I have never seen him do with any toy. He clutched that plane with both hands and held it to his chest. He even fell asleep with that little plane clutched in his hands holding it like it was the last toy plane on earth. Most of today he had to have that plane in full view or in his hand. Even getting him to let go of it to take his coat on and off with a struggle. He took that plane in the bath with him and he has not allowed a new bath toy in over a year. He throws them out no matter what.

                Phillip has a few toy airplanes he loves and we take them with us on a long trip but he never plays with them. There is way too much going on the world to break focus on all the things he is taking in. when I hear autism described as lack of emotion it always makes me sad to think people take this description seriously. What I see is not a lack but a way of showing emotion differently than what we might be used to from kids and adults.  

                The death grip with both hands on that little plane was not a love for a new toy at all. New toys are really no big deal to him. It was a strong grip on how he felt about seeing daddy again and this was the only way he could get that feeling out. It’s been a full day now and we are home with dad. The plane has joined the other planes on the coffee table and Phillip is playing and laughing with his dad. The emotion broke through and is coming at dad full force now.

                Flight patterns and a two fisted grip on a toy has turned into tickles, laughs, and cuddles.  The emotion has broken through.             

The weaves of life....can you think of any?

                Life weaves together in such a mind blowing way and when I sit back and think about all of the changes and people I have been given in life it’s almost overwhelming. Lack of resources for our son is taking us back to where I grew up and having family support in daily life. For that I am grateful and who knows if that change would have come without the diagnosis. I like to think it would but the diagnosis cleared the road to home so to speak.

                Sharing an interesting story today that proves just how life weaves together in such a crazy way. I was adopted as an infant. From that the Brown family found me and that alone proves God is in my life. The gift of being given up for adoption by my mother and the gift of who found me was an amazing weave from the start. At twenty years old I searched for my biological family and found a group of equally amazing people. My aunts, my older brother and a little sister became an even more awesome addition to my life. Including all of the people that come with them and moving home is going to give us all a chance to have them in our lives as they should be.

                I met Phillips father four years ago, ten years after meeting my biological family, in Montana without knowing he had grown up in the same area as my biological brother. I learned of that quickly and asked him he knew my brother but it was a big area, in another state, and he couldn’t recall. Considering the odds of that I didn’t ask again but one day my brother called my house and Phillips dad answered the phone. We learned not only did they know each other but they had in fact been friends. Phillips dad had gone by a different last name at the time and it had been years, so the connection took a while to figure out.

                Simple break down, baby gets adopted. Grows up to find her biological family and miles away ends up having a child with her biological brother’s old friend? The odds of that happening are slim to none and the weave of life on that one is just amazing.

                Now we are getting ready to leave a town I never expected to live in to begin with, back home which I never expected to move back to in life. I gained a larger family while living here and made connections with people I will hold onto for the rest of my life. That connection was made by way of buying a house and an instant connection with the realtor. An amazing woman who I cherish daily and will stay connected to my entire life as she has become family to me. In that connection I found a house next a couple who I also consider family and also will stay in contact with through life. Both connections have been more than supportive ever since our autism journey began and our family in general. Life would not be the same if they hadn’t found a way into it, and the way in was only through chance.

                All of these connections weaved together in life and each one adding to a life story that wouldn’t be complete or even possible without them. It’s no secret I over think, but how everything weaves together and the connections in life are sometimes just to amazing to ignore. Over think your life just a bit and I can imagine you will find some weaves to important to ignore. Through bad and good it’s there and I say Thank God for that. Even if you don’t believe in God, you will still find the weave if you pay attention.

               

Put that damn phone away and help!

                 Here is a picture that came up this morning on Facebook. There is no autism in this other than this baby is not autistic or would have been screaming like crazy from sensory overload. There is a human nature lesson in this.

                When you first look at it your quick reaction is, what a terrible mother. Why would anyone put their baby on that nasty floor? That was my reaction at first. Then I began to think more and more about all the different elements involved that aren’t just about a baby on the floor.  I began to feel bad for this woman because of those elements you won’t think about at first glance.

                First thing I thought about was she felt putting the baby on that nasty floor was the only option. Something kept her from asking people to help her. Maybe she felt it would make her a burden to others or maybe she just really felt putting the baby on the ground was no big deal. The only way to know would be to ask her personally and unfortunately I can’t, but I sure would like to. Then we have the women standing nearby with her back turned. Did she see this happening and if she did how did she react? Again maybe she didn’t notice although this would be a hard thing to not see happening.  The woman standing nearby not helping gives a little more clarity to why mom didn’t ask if you think about it. If people see this happening and then don’t step up why would someone feel people are kind enough in the first place to lend a hand.

                The picture alone should give us a mountain of information about society. When the picture was posted all of the comments were aimed completely at the mom but there is so much more to aim at. There is women nearby and the person who took out there phone to take the picture and blast it on facebook.  I don’t use my phone to take pictures of shocking things and I especially wouldn’t use it at this moment. My phone is used to call people not humiliate them. In fact the time spent taking this picture could have been spent walking over and offering to help. So yes we can take aim at this woman for putting her baby on a gross germ infested floor but let’s not forget what our society has become. So completely wrapped up in documenting a moment with a cell phone the ability to pull up some empathy is gone. I can’t help but think that in some way this contributed to how a mother would rather put a baby on the ground than ask for some kindness of others in the first place.

                Like I said maybe this was just her way, but how did we all get this way? I have had some difficult moments with my son in public. Rarely do people show empathy when this happens. If they do it’s a little old lady who hasn’t allowed technology to rip out her soul. Is it just a matter of time before a picture of a struggle of my own ends up blasted on the internet? Maybe, because some people do see an autism moment as bad parenting.

                People need to stop preying on each other with cameras and start stepping up with kindness. Or have we gotten so far in to this habit, kindness has been smothered out of us. I like to think there is still hope for the human race but in order for that to become a reality we have a whole lot of work to do on ourselves and our daily interaction with others.

                The title attatched to the picture this morning was "Get that damn baby off the floor!" but I think what could have been added to that was, Put that damn phone away and help!

               

                 

We can all learn from total lack of selfish desire.

             Birthdays are such a great event! We all have one and we all love it, to a point anyway. I am more into ignoring mine than celebrating or making a fuss about it but secretly I do like to feel special when my birthday rolls around. Kid’s birthdays are nearly the greatest day of the year. Three holidays in a kids mind are stand out awesome and those would be Christmas, Halloween, and the birthday. The one day everyone is celebrating you.  There are balloons, cake, ice cream, a party, favorite dinner, friends, and those ever amazing presents screaming your name and your name only.  Kids wonder if they have a present in there they have been begging for. Maybe a surprise present mom and dad said they would never buy. It’s just all around one of the greatest days of the year to a child.

                For my son it’s an entirely different story and as strong as I aim to be all three of these holidays can get me a down a bit. Yesterday was in fact Phillips third birthday and to be totally honest he didn’t recognize it. I actually don’t even know if he understands he is three years old. I like to think he does and I like to think he knew it was his day but all of the clues of the day pointed to he had no idea what was going on. He liked his balloons because they float that’s cool and he liked some of that nasty chocolate cake. I unwrapped his presents and he had almost no interest in the unwrapping process. It took him some time to even acknowledge the gifts and play with them. New things are so easily accepted. A hard thing for others to understand when a gift is presented to him, no matter how awesome it may be, it’s still new and out of the ordinary. I end up pushing it on him so the person who gave it to him feels like he likes it. A habit I am getting myself out of because it’s an issue that is only based on my concern and no one else’s.

                Even though he lacks the ability to get excited about his own birthday and it gets me down a bit there is the other side to it I appreciate in a huge way. He is a child who doesn’t require things to be happy. He doesn’t demand anything as far as material objects and even though he shows no interest right away he also doesn’t show disappointment if something isn’t what he thought it would be. Sometimes a kid gets a gift they don’t like and they let it be known but I don’t see that in him either. It’s all based on interest. There is no show if emotion regarding selfish desire. To me that is one of the inspiring things about him. Of course I want him to be excited about the holidays but there so much to learn from someone who isn’t capable of falling into the selfish desires of wanting to many things, even if he didn’t choose to be this way it’s something we all wish we could grasp one way or another. The ability to be happy with what you have and the only desire that ails you is to communicate how you feel. What if we all had just a little bit more of this in ourselves?

Hypersensitive immune system and autism and we are 3 today!

http://www.autismspeaks.org/science/science-news/study-finds-children-autism-have-more-active-adaptive-immune-system

http://www.cdc.gov/vaccines/pubs/vis/downloads/vis-multi.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898160/

              Today is Phillips third birthday and we will be spending it trying to gain our strength back from two days of an antibiotic his little body didn’t like. I have learned so much in the past three years and even now I wake up every day with a new lesson coming my way.  I can’t avoid it, he won’t let me and I say that with gratitude and humor at the same time. We aren’t doing anything today but resting and waiting to have a party for him when dad comes home in a week. I can’t let the day go by with nothing so he does have some presents and the old inflatable birthday cake I have used for everyone for years is up and running in the living room.

                I was up last night until 3am researching things I hadn’t come across yet on this autism journey. It seems just when my mind is completely made up in regard to the difference something jumps up and tells me to read more, because I am missing something. I have always stuck very close to my genetic difference idea and even after hours of reading last night I still believe in the genetics of autism. Even when it comes to genetics we do know carrying a gene for something doesn’t always mean it’s going to be an active one. Then I begin to think about what pulled the trigger as you will hear so many scientists say. I haven’t been a huge fan of Autism Speaks because of all the money raised for research and very little being put into resource but being humbled is an important lesson in life we all need to embrace from time to time.

                My son’s immune system is exceptional and rarely is he affected by sickness or any physical problems that could be associated with autism. It has all been neurological to this point which convinced me this is just a genetic difference. This weekend when he was given his first antibiotic ever for a bladder infection he actually did not have I was paying attention. His reaction to the antibiotic was a difficult one from throwing up, fever, chills, swollen lips, swollen throat, and what appeared to be pain in his stomach. The reaction began on the morning of day three and he had taken only two days of this medicine. Why is it a child with an impeccable immune system would be affected so horribly? A foreign substance in his body that kicked his immune system into overdrive and overdrive is what causes the body to go to war with what it doesn’t recognize. A hypersensitive immune reaction and the first time I have witnessed this happen to him, I think.

                We focus so much on genetics and vaccines or at least the general public does, I am now leaning towards genetics and a hypersensitive immune system which also would involve how his body can or can’t process a vaccine. Not one certain vaccine like so many people blame, but all of them. The vaccine process begins at birth and during the first two years of life we are given a strict timeline to get them. For good reason and I would never say not to get vaccines because it is needed to a certain point. Here is where my mind has evolved to in the last couple of days and researching until three am last night. If a child carries the autism gene and is born with a hypersensitive immune system the process of his body going to war with foreign antibodies could begin from day one. Each time receiving a vaccine could certainly have an effect. This would not be vaccines causing autism; this would be autism losing a battle with the process of vaccines. Or for that matter any foreign substance the immune system goes into overdrive to get rid of. If the medical community could find a safe way to test an immune system from birth before giving anything that may kick it in to overdrive, could it possibly keep the safety on that autism trigger?

                Once again this journey has made me change direction in my thinking but not one way or the other, just a new road that seems to make the most sense to me. In fact I am surprised my children didn’t wake up to papers spread all over the house with crazy random facts written all over the walls this morning from my intense desire to learn more last night and having the evidence sleeping peacefully in bed. As much I enjoy being humbled, I really don’t like changing my mind unless I feel 99% confident in why. When it comes to autism 99% percent confidence is kind of a funny statement to me no matter how much I research.  One thing autism has taught me is that I will change my mind to many times to count and I have to be able to accept it.

                At this very moment I have an adorable birthday boy sitting next me with a sour look on his face. He has managed one piece of toast and three big swigs of water to begin what may turn into a birthday to remember. No matter how much I learn, change my mind, and research he still just needs his mama to tell him it’s all going to be ok. I don’t know about you but even I need that to this day in my adult life and the journey continues.

 

Seems like the day will never end, to bad it will!

               Yesterday was one of those days that just seemed like bed couldn’t come soon enough. Beginning with an early doctor’s appointment which the world around me refused to let us get to on time. After trying to wrangle some pee in a cup for testing then only finding a cup to put it in that I had little faith in and stuffing it in my pocket, we met the world’s longest slow moving train on the tracks to get to the highway. Once we reached the highway we met construction for nearly the entire seventeen miles to the clinic. We made it just in time to hold the appointment. The clinic has a great play area with toys that are perfect for a child who is on the spectrum. This gave him just enough to time to get totally focused on the toys before they called his name.  

                I made the mistake of bringing my coffee mug in with me so when his name was called I had to break his focus and wrestle him through the door. At this point I had a child that is all arms and legs putting up a fight from a too quick transition, a room full of spectators, clinging to a coffee mug that should have stayed in the van, and an questionably sealed cup of pee in my pocket.  At this point I gave the coffee mug to the nurse to carry. Since Phillip was already in battle mode I knew the rest of the appt would not go well. The nurse tried to weigh him and tried to check his vitals but we are now at the point touch is a problem. He was still focused on those fabulous toys I just yanked him away from.

                I offered the nurse the pee I had in my pocket for the UTI test and giggled when she put on a rubber glove before I handed it to her. Yes it’s gross but the journey the pee made without fail was a good sign she was safe.  In the end we ended up with our first prescription that is supposed to be given for seven days. The pharmacist said to me, it doesn’t taste that bad, as though it shouldn’t be a problem. Again I was given a giggle because unless it tastes exactly like tapioca pudding it’s not going to go down well ,if it goes down at all. We are on day two and I am going to have to call Monday for a different option because the medicine does in fact not taste like tapioca pudding.

                Once we finally made it home it was a constant and long day of Phillip wanting to take a bath as he figured out that was the only way to get relief from a painful UTI. The challenge with that is, when my son isn’t feeling his best some of those spectrum side effects shine through such as turning the bath water off. This is an old problem we conquered long ago but it came back full force. Five baths total for the day and each one we had complete upset when the water was shut off. One of which he became so out of control I had to remove him from the bathroom and put him in his room to calm down. To explain this challenge it has to do with sound of the water flowing. It runs long enough for him to get comfortable and then when I shut it down it is a frustrating fast change. If he feels unhealthy these fast changes are much harder for him to process. We had a full day of these challenges and mom was exhausted.

                By ten o’clock I was literally begging my son in my mind to pass out for the night and at ten thirty my silent begging paid off. I was craving my pillow more than a heroin addict craves a fix but there was my oldest son sitting on the couch watching movies. One thing I love is just a little free time to sit and talk with my older kids and what I love was staring me right in the face no matter how bad I wanted to go to bed. I sat up with my son watching an old movie, showing him some old comedy and having some good laughs. Soon it was midnight and I just couldn’t stay up any longer but the longest day ever ended perfectly. In fact I would say I am entirely grateful the day was as long as it was because just sitting around with my son seeing his smile and hearing him laugh was more than worth the time added to the day.

                A difficult exhausting day that ended with an hour and half of exactly what I needed to feel gratitude for endless day, and by midnight I felt as though the day just wasn’t long enough.

That dang normal bus...or is it?

               A few days ago I posted a blog in regard to some merchandise being sold that read I ride the short bus. Since then we have covered the topic of bullying or victimizing depending on how you look at it, and today I am digging into a topic that pertains to the bus the socially acceptable kids ride. That dang normal bus nobody takes aim at because no one on it needs a little extra help to begin the day. The thought we have buses at all that determine who is more challenged or less is amusing when you hear all the things that happen on a bus full of socially adjusted kids.  

                If you rode the school bus as a kid you know it was common for the older kids sit in the back of the bus. I guess you could have called it the right of passage for being in a higher grade. A rank in some ways and you knew one day you would earn your spot to, or maybe you had an older friend or sibling who you sat with. No matter how wrong it may be it was common then and common now.

                I have heard of a young person who has taken this rite of passage to entirely new level on the “normal” bus. A level I am a little baffled by because of how she has gotten away with it. This person gets on the bus after school to make sure the younger kids are not in the back row of seats. Also making sure her seat is empty. Typical bully and even though this is just a show of power it’s not unheard of.  The part that might just blow your mind is this person doesn’t ride the bus anymore. A driver’s license and drives to school but still taking the time to check the bus to make sure those seats are not taken by the younger kids. That little detail totally blew me away as to what is fueling this ambition to hold rank on a bus this person doesn’t even ride anymore. Takes time to check the bus and yell at whoever may be sitting in the seat of royalty and gets off the bus to drive home.

                In regard to bullies and the age of your kids your tactic has to change sometimes. When my kids were little I could just jump to the rescue and put an end to it but as our kids grow up we sometimes have to step out of the way depending on the degree of the situation. I wouldn’t call this a situation parents need to rescue anyone, other than the seat warden. So it’s up to the kids to react or not react to the situation. Leave the seats empty and continue on or take the seats and band together? I know what I would do or would have done back in my school days but my school days were different and much easier. I would have taken the seat just to see what would happen but I can’t say my desire to test things like this in life has always worked in my favor. Then again I can also say it has worked out for the better at times as well.

                The short bus is for kids who have a different challenge and because of that both the kids and the bus become the target. I have to wonder though if there is rank on the short bus or if kids who don’t ride it anymore are stepping on the bus to hold claim to a seat with intimidation. I find that impossible to even imagine because most of the kids riding that bus might have struggled just to get to the point of being able to. The day is full of difficult challenges and pulling rank is not usually one they have time for. The privilege of going to school on a bus at all could be something they have had to physically and mentally fight for no matter what size of the bus.

                As for the person who is guarding the seats there might just come a day someone wants that seat more than they do. Life has a funny way of humbling us when we need it, when we least expect it. If we are wise enough to expect it at all.

 

Is Bully a Strong Enough Word?

                 I haven’t posted lately basically because my mind has been going in so many directions I haven’t been able to pin one topic down. Something does weigh on me all the time especially when I think about my son in the public school system. Any school system for that matter is a fear for me as a parent. He doesn’t have the social skills he is going to need yet, and I can only pray he gains them before he faces a school setting.

                Bullying has been a topic lately everyone is paying attention to and as a parent of three children there is no way I can ignore it and don’t want to. Every time I see a story about bullying I always feel like “bully” just isn’t the word anymore that describes what is happening with kids. Twenty years ago a bully was someone who was just a power hungry jerk. Most of us have been bullied at one point in life. Maybe it was when you were a kid and someone made fun of you for having a flaw or maybe it’s been in your adult life but we have all been a part of it one way or another. When I was a kid you pushed through a bully and were expected to be strong. I would even go as far as saying it was a part of life you had to deal with and move forward.

                What I see happening now is beyond the word bully. Victimizing, harassment, assault, and abuse come to mind but bullying just doesn’t seem to fit anymore. Maybe one of the reasons schools aren’t taking the problem serious enough is because the word bully just doesn’t have a strong enough ring to it. Maybe if a parent came in and flat out stated, my child was assaulted, harassed, verbally abused, and victimized it would put more of a solid and serious description to it. Or how about just bypassing the school all together and heading straight to law enforcement. I really seems like some schools are at odds on how to really address the problem because it’s not effective. Then you have a child who can’t get away from the torment and finally defends themselves physically instead of just taking it and ends up suspended and gets fighting on their record. It that really fair to the child who has been forced to do the only left to do? The old walk away method works until the abuser just keeps following ready to attack. I have personally been overpowered by someone physically and no matter how badly you don’t want to fight back, instinct eventually does kick in and you have to.

                Internet victimizing is totally out of control and I honestly don’t see how any of us can get a handle on that. I always tell my children not to engage with an internet tough guy because it feeds them and they just don’t stop. Not responding is easier said than done and I see adults do it all the time. It’s just too hard to ignore and then the fire is fueled. We all know some people are much stronger online than they would ever be face to face and that just sets the stage for really causing some damage in someone’s life.

                At some point we have to start recognizing when bully is not a strong enough description for what is happening to kids. When someone is physically attacked by a gang of insecure girls, it’s certainly gone beyond the bully point and reached full blown assault on personal safety. In the adult world when you fear for your safety you don’t tell the principal and hope they can stop it, you file a restraining order and keep your cell phone on ready to dial 911. Seems like in a school system that suspends a kid for a day for beating someone up but will call the police over a stolen pen the priorities are completely askew.

                I don’t think anyone has a real clear view on how to get a handle of the lack of empathy epidemic happening to our kids but I know we all see it.  If and when it becomes one my kids there is no way I look at bullying the same way I did when I was a kid because it’s just not the same anymore. Bully is just not the word to describe it. It’s gone way beyond that and lack of empathy has become a disability in our youth. Kids have crossed over the word bully and have become completely out of tune with feelings in general. He scary part about that is this disability begins at home.

               At this point we all need to make damn sure this disability does not find a way into our homes.

                 

Number one challenge potty training by far!

                The last three weeks we have been working towards potty training. We began with an intense fear of sitting on the potty. Once we jumped that obstacle we were on to the next challenge of actually sitting on that potty for more than five seconds at a time. If you read my blog often you know I had my potty invention idea which I will say was completely effective at teaching him he can sit on the potty for long periods of time or at least enough time to make the magic happen.

                What have I learned about potty training an autistic toddler verses a non autistic toddler in the last three weeks? There is a world of difference. Many people aren’t able to potty train a child with autism at all and some take years to master it. It is in fact one of the most complicated challenges we have faced and I knew it was going to be but I based that on lack of communication not what I have actually discovered.

                When you think of potty training you think it’s time to teach my child to recognize when it is time. It is time to teach them being wet is uncomfortable and once you are able to show a child these two things it starts to take off. The child learns that feeling and slowly begins to master it. Not always so easily but we all know how it works.

                Here is our challenge and it’s one I am still trying to figure out. You see my son has full control of his system when it comes to going potty. He will actually hold it sometimes to the point of pain, not just number two but he can hold number one way to long as well. He knows the feeling of being wet and he hates it. He also knows what the potty is for and I have no doubt he understands how it is used. So, what is the problem at this point? It’s a tricky one that’s for sure. The routine of going potty in a diaper for nearly three years is not so easy to break. You might think if he just relaxes and does it once in the potty he will understand. When a child with autism is set on routine it is nearly concrete. In his mind this concrete routine will not be broken.

                The moment I realized this is not a physical training issue or a matter of getting him to understand a potty was a very clear signal from him routine has a firm grip on why this is so difficult.

 He was running around in the buff once again. I had a couple of diapers still tucked away in a travel bag in my living room. We hadn’t used the bag in a very long time but he remembered the diapers being in the bag. He walked over pulled one out and held in front of himself to go potty. That’s right, his mind was telling him you have peed in a diaper your whole life and this is where it goes. He didn’t even have to put it on just the simple visual of what he is used to. I stopped him and placed him on the potty where we blew bubbles for nearly a half hour and he would not go potty….it’s not where it belongs in his mind.

                When you hear of someone struggling to potty train a child with autism or maybe a caregiver who is giving a parent a difficult time on the issue consider how the mind of autism works before judging if the parent is doing all they can. It may not be a matter of not knowing how or some might even think a lazy parent who isn’t trying hard enough. Changing that routine is much harder than you can ever imagine. Not impossible and I now have a new approach to this challenge. Three years of a routine for him is not going to change so quickly. Every day we are working towards a change in that routine actually becoming the new routine he is used to. Eventually his mind will let go, I hope.  Everything else he needs to know and understand is already there to potty train.

                 

Short Bus merchandise? not cool, not cool at all.

http://www.cafepress.com/+i-ride-bus+gifts

 

                Let me blow your mind for a moment, or let Cafe press do it for me. If you check out the link above you will find merchandise that states I ride the short bus. I have to say when I first saw this I thought it was a bad joke. I clicked it and found it was actually being marketed and it was for real. Then all I could think was…You have to be kidding me.

                I do realize the mastermind behind this creating probably felt it was funny and unfortunately it’s probably selling or it wouldn’t be offered in so many varieties. Let’s face it, small minds like to take jabs at the short bus. By small I mean kids whose minds haven’t experienced enough life and are still developing an understanding for others, if they develop one at all. This is typical and we know it happens but then we have the other small minds that are grown adults and should know better.

                This is no way funny or entertaining to anyone who is raising a special needs child and I would hope people who just see this for what it is without special needs in their life. It hard enough to tolerate the lack of understanding in society without the ignorance of greed stepping in to profit but way of something thought to be funny. So far our country is still a free nation, for the most part, to profit in any way you like and offending someone is also something we are all free to do. Anyone can create a product they think will sell and it really doesn’t matter who doesn’t like it as long as there are some people who do. The irony in it is by trying to get this merchandise off the market a market is actually being created for them.

                Sometimes ignorance really does prevail but life is funny and we all know people learn lessons they need to learn one way or another. I don’t know about you but I have feeling the person or people who are making a profit on this are going to learn a hard lesson at some point in life…..and it just might involve a short bus or a person who has ridden one. We have all seen what has been happening on those long “normal” school buses. It’s in the news all the time and personally I would much rather be on a short bus any day.

A boy and a mission...

                I love to watch my son operate and I mean literally how his mind operates. I love this about all three of my kids and can say one of my favorite things since the day I became a mom is watching how their minds work. It doesn’t matter if it is a small thing or a big one I just love seeing who they are. It’s actually my idea of fun. I know maybe I need to get out more but it really is fun to see happen.

                Today I stopped at the park for a bit and when I pulled into the parking lot I glanced back at Phillip in the rearview mirror. His eyes grew much bigger and his mouth flew open. He didn’t make a sound but his face was in shock I took a right instead of heading over the bridge like we typically do. Once I unbuckled him he took off like a rocket but not in the direction you would think a three year old would go. In one direction was your typical playground in bright blue colors and the other direction was the river. The river was his destination and nothing was going to slow him down. His little legs were moving top speed and he did not once look back. As soon as he was within 6 ft of the edge I told him to slow way down because I never know if he is just going to bomb right in or stop.  This time to my surprise he slowed down the moment I told him to, and waited for me to catch up.

                I took a magazine with me because he likes to focus for a long time and I can’t sit very long. I thought maybe it would help me to not be so antsy to leave to fast. We tossed a very small rock in the water and that was when he began his mission. A half hour later he had cleared a small section of the bank of river rock but that part of the mission wasn’t what blew me away. It was the way he chose to do it that I could not stop watching him. From that tiny rock he started a pattern. The next rock he chose was a bit bigger and he would carefully wait to watch the splash. Each rock he chose after that was just a bit bigger than the last. It wasn’t just the size he chose carefully but the shape was important to him as well and flat was his shape of choice. Even if he had to dig for the next perfect rock he did it and always just a bit bigger. Eventually he was pulling up flat rocks he could barely lift and barely throw but he was not going to stop. When I could see the struggle was just too much I told him one more and all done. With that he barely tossed his last large rock, waited for the splash and took off for the van. Just like that, no fuss and almost like he also knew he was running out of options.I never did pick up that magazine because I didn’t need to. Watching him and the way his mind was working was far to entertaining and fascinating to miss out on for some junk mail magazine. In fact I hadn’t even realized how long we were there.

                    A day like this is one reason why I have such a difficult time with the way autism is perceived by so many people. How can this kind of thinking at not even three years old be looked at the way some people see it? How can the mind of a toddler who just created a strict pattern based on size and shape, refusing to give up be considered broken in eyes of society. I know, he doesn't speak well and he gets overwhelmed but at the same time he seems advanced. Advanced in some ways and behind in others. Just like rest of the human race.

                   Autism brings something different to each person and we are very blessed that Phillips autism doesn’t cause any discomforts but I sometimes wonder if there are things about autistics we are missing just by simply being so caught up in the diagnosis of autism. Maybe sometimes we are so wrapped up in the struggle we miss the amazing things. I know if I would have picked up that magazine I would have missed something very important in regard to my son’s abilities. I like to think I know his abilities….until he proves to me that there is so much more I need to know.

Have you tried a holistic cure?

                This morning I came across again a post on healing autism to the point you can’t even tell the child had a diagnosis. First of all I hate these articles for lack of classier way to describe my feeling towards this. Second of all there was no description to the approach taken to “fix” this child’s autism and so many times I come across this kind of thing. A shout out that autism can be cured and there is hope for your children and every time details fail to appear. This time I just simply had to ask, what is the answer? If someone is going to spend so much time trying to convince the world that an answer is there then why not share it so we can all get in on this plan of action to “save” our children. The answer was vague as I expected and simple. Holistic and that would be treating the mind and body as a system naturally. Something we should all practice in our daily lives because we know it’s connected one way or another. Even without a diagnosis in hand for anything holistic is a good way to live.

                Whenever I see this holistic declaration I think about all the physical problems people are enduring with an autistic child and yes it makes sense. Some of these never ending problems are no doubt caused by something in the system that needs to be addressed if possible. Then I look at my son and I get a bit baffled. You see Phillip is extremely healthy. When I say extremely I mean it and even I am a bit blown away by his ability to heal and stay healthy. He falls down hits his head, rarely by the way because his balance is impeccable, and he heals from it faster than I have ever seen. He actually has not one physical side affect of autism, if that is what all of these ailments truly are. I have two kids in school and they bring home illness. Phillip never catches it and I can say only one time has he had a fever that raised concern. A stomach flu that caused him to vomit one time and dehydrated him so no he isn’t bionic but aside from autism his is perfectly healthy. That’s if you see autism as a health issue instead of a neurological difference.

                Are all of these holistic claims of treatment really curing autism? Or are they addressing things within a child’s system that are causing physical problems and sometimes extreme physical problems. Could it be once these things are addressed the autism is still there but the relief opens doors to progress for a child. I know when my son is uncomfortable with his bowels he seems to be much more in his own world. Difficult to get through to and his focus is clearly on his discomfort. Once he has found relief we get him back so to speak but he still autistic. Being free of pain gives him the ability to focus more and communicate easier with the people around him.

                It seems like in the medical community the autism is the main focus. Address the autism and just assume the discomforts come from that. I tend to think and my opinion means nothing, this is a backwards approach.  It is proven autism is genetic even going as far as being able to tell if your child has this genetic factor. For me personally I would never put my faith in a cure or treatment for this difference. Telling parents they can eradicate autism creates a big black cloud over a parents head and causes them to think they just aren’t doing enough. Most parents of an autistic child already feel this way from the day they receive a diagnosis so convincing them if they do more they can fix it, is just a toxic message to send. Guidance for sure, belief that you’re doing everything you already can also for sure. Holistic is a great thing for anyone if you are disciplined enough to do it but acceptance is one very healthy step towards understanding.

 If anyone ever tells you autism can be “fixed” hand them a pen and paper and ask them to please write down step by step instructions for this plan of action. Or you could probably get online and buy a rash of eBooks with the same claim for one hundred dollars or more. Make sure you ask for a money back guarantee because you’re going to need it.

Wandering is a huge issue

http://healthland.time.com/2012/10/08/study-parents-receive-little-help-with-autistic-children-who-wander/

              The link above is an article my aunt sent me this morning I found very interesting on the subject of wandering. Do you have a wanderer? I sure do and I would say it is a constant issue when we leave the home. At home we have a routine, even outside, but when I step away or the routine changes outside he will just go and go. A huge worry for me when we are in a crowd or near roads but even at home he has given me a scare with his intense desire to investigate and not respond when I call for him. In fact I can’t even get us in a situation that I lose sight of him at all. I absolutely have to have a visual on him no matter what.

I remember the first time I realized how serious that visual needed to be taken and what it really meant. He was not diagnosed with autism yet and we were outside working in the yard. Phillip was just down at the edge of the house. I was digging weeds out of the flower bed and I took my eyes off of him for maybe thirty seconds. When I looked over he was gone and I assumed he had gone into the garage only a few feet away. I got up and walked to the garage saying his name but he wasn’t there. Then I assumed he made his way to the back of the house while I was walking to the garage so I continued around yelling his name. I wasn’t sure why I was yelling his name because I knew he wouldn’t answer, he never had.  Once I rounded the back side of the house and didn’t see him I started to panic, and really started yelling his name praying he would just make a sound for me to hear but nothing, just silence.

We live on the side of a mountain and our home is one story. The back yard is rather large and sits on somewhat of a flat off the mountain, but the forest is dense and lots of trees and brush to hide in. At the point I realized I had in fact lost him not only was I terrified and shocked from how fast it happened but I didn’t know what to do. If I was to run in my house to get the phone I may lose a chance to spot him or hear him and because he doesn’t respond that was the only way to find him. I stood there yelling for him for what was maybe seconds but to me it felt like an eternity. I noticed one of our shed doors was slightly open and that’s not a usual thing. Ran over still yelling by the way, looked inside and there he was. Standing there spinning a tire on a bike without a care in the world. He had been in this shed a few times and had wanted to get his hands on that bike so it made sense he went there to satisfy his desire to investigate. I can say I nearly had a stroke that day at the thought of him wandering the mountain side or even close by and me not seeing him. Wandering happens with any toddler but the lack of response is what frightens me the most. There has been a time he has simply stepped behind a large tree and I have frantically yelled for him with no reaction.

Wandering is a serious issue for kids with autism. Some are injured, lost for a long time, and even horrible accidents that end a life can come from wandering. No the child is not confused when the wandering begins. I think it’s an extreme focus and desire to investigate that can lead to dangers the child is unaware of. Preventing it is an unknown and no I have never heard anyone from his diagnosis on address this issue. I have learned therapy dogs are a very good way to prevent this from happening if you are lucky enough to have one available to you. Even in a public place a therapy dog will notify a parent when the child begins to go off track. I know with our own family dog, and she is no guide dog, he will follow. I can sometimes call the dog and he will turn around with her and stay within a safe distance.

I have considered the old backpack harness you see some kids wearing but he is nearly three and I am afraid I waited too long to introduce him to something like this. I always think about the news story a couple years ago with the woman dragging her child through the store.  It may have worked great if I had known early on this was going to be such a dangerous problem with his autism. I could have introduced it as soon as he started walking but I was unaware he had autism for one and for two the ego in me said I wasn’t putting my child on a leash. I was wrong big time on that one and introducing him to a harness early on would have made things much easier. Who knows, it may have even instilled a routine of staying close so when the time came he may have learned to stay within a safe distance. I would say anyone who has a new autism diagnosis and it’s early enough….get yourself a little monkey backpack with the leash and consider it a life saver and a fence, a nice big tall eye sore of a fence. Be very clear to anyone who cares for your child of just how much of a danger wandering can be and pray, pray a lot.

Deal with it...but explore all options first.

             For the past four days I have not been feeling my best and the part what was getting me down was the fact this happens every year like clockwork and sticks with me through the entire cold season. It’s infuriating to say the least and with three kids to keep up with I just can’t afford to go through this health battle all over again. Two years ago I ended up in two emergency rooms with no answers and in the end my dad and I figured out it had to be environmental. I began taking an allergy pill every day and that is year round. Shoved it off as a mold I was sensitive to and when you live where I do, there could be a number of them to blame.

Four days ago when I started feeling this way all over again and had to double my allergy pill intake, the thought of being ill for months all over again ripped apart my optimism that I pride myself so much on. Once that was weakened it seemed like every little thing was able to rush in and bring me down more. All of the stresses I have had that I have been able to keep at bay came flooding in and this little Miss Susie sunshine was walking around with a big black cloud over her head.

                At 2am I woke up with again a stuffy nose, swollen eyes, and complete frustration. I also had to go load the fireplace so the morning cold wouldn’t get us and it hit me. After 4 years of struggling through the winter feeling like death my wood stove gave me a big evil grin. It has to be the wood stove. Not the wood stove itself but the wood and process of burning it. The tree pollen and the molds that grow in it are in my arms every day and I am burning it, so it’s coming back into the home every time I open that dang stove up. I experience the allergy all year but it is at its worst beginning four days ago when I began to burn. Bottom line, I am allergic to trees. The irony in that being a girl who was born in raised in the northwest and now lives in a national forest is just amazing. Even more amazing is the time it has taken me to figure this out. Three doctors and two emergency rooms with no answers and all of sudden the answer hit me because the answer was sitting right in front of me the whole time. So that is that and it’s no longer a mystery and now I get to push through it once again. Totally unavoidable and nothing can be done to rid of this cold weather problem. Now that I have discovered the answer my attitude is nearly restored but it may take a couple of days to completely dig myself out of the misery hole I landed in.

                Life is funny this way. Things happen you can’t control and no matter how hard you try to figure it out the answer still may not bring relief. In this case I can’t even work around it because it’s a matter of keeping my family warm.

                Years ago I worked at a photography studio and this may seem off subject but it’s not. He lived in another town and I ran the studio when he couldn’t be there. If a problem came up all he would say to me was, “deal with it.” This completely frustrated me to no end and never left me feeling like I could deal with at all. Fifteen years later those three little words still jump up into my mind more than I ever thought they would. Sometimes it’s really all you can do.

                So today if you are faced with a challenge and you are struggling to find an answer, in the words of a wise man I once knew….Deal with it. I will add I think his photography studio was closed so it might be wise to pick and choose when and why you take this approach. Explore every other option first and once you have decided there just really is no answer that’s when it is safe to just….Deal with it.

An innocence I wish he could hold on to.

                We always hear how autistics may not be able to function or keep up with the social standards we have placed on each other. They may have an awkwardness to them and being social is said to not come easily so it must be taught. This concept has always been a bit silly to me just because of the simple fact I have never met a socially adjusted person in my life so asking someone with autism to adjust is the ultimate pressure we can put on them. It's known autism comes with honesty, direct communication, and faking it is something autistics struggle to do. For the rest of us lying, saying the “right” thing and faking a smile comes pretty naturally even if it’s wrong we do it if we think we need to. Autism however is known to see no logic in these things. The irony is astounding that we treat people for this difference, even going as far as trying to cure it, instead of learning ourselves from it.

                If my child is a bit different socially I am at ease with that completely and know his abilities will over shadow any awkwardness he may carry with him. At lease I intend to raise him that way and hope it settles into his mind as we tackle the challenges life will bring. There is one thing about him socially that makes me very uneasy and afraid for him. If he is on a playground and another child pushes him down he has no reaction. If a child speaks to him in a cruel tone he has no reaction to it and continues on with whatever he was doing before it happened. He will not react to this side of social interaction and I don’t want him to in a bad way, but not reacting at all could be a bad thing.

                He smiles, laughs, runs, plays, and does all of the things a boy his age should do. He loves other kids and although he may not always play in an interactive way he loves being around kids in general. From what I can see the only real social challenge that could have some real negative effects on him is his lack of ability to stand up for himself or react to a sticky situation. At the same time it’s an innocence I wish more people had. If it wasn’t just him with this state of mind a mess of world problems would be resolved. Can you just imagine a world full of people who have no idea how to be mean to each other? Full of emotions but just flat out unable to treat each other in a nasty way.  What an awesome world that would be.

                Phillip will be three at the end of the month and preschool is quickly approaching. When they said the words “special education” to me I was a slight state of shock. Honestly I felt they had gone a bit overboard on that recommendation. My mommy ego was getting in my own way at the time but now I can say that is the right place for him. My hope is other children in whatever program we find for him face this same challenge and he can hold onto that part of himself a bit longer in life. Avoiding that survival tactic until he understands what it is or at least reacts in some way. I could be totally wrong and special education could be just as difficult for him socially as main stream education, but I hope not.

                For now I am there for him with my ears tuned in and my eyes peeled but I won’t be able to do that for him forever. I pray a lot that somehow he will begin to react to this social challenge because unless he learns to react he will be a prime target for bullies and cruelty.

                It’s an innocence that I don’t want to change about him but in order for him to survive in a world full of social handicaps we don’t label, does he really have a choice? Do any of us?