Are doctors afraid of autism?

                Yesterday was a day of enlightenment for me as a mother and some disgust as well. Took my little man in to check his ears after the doctor gave me some advice to use drops for a while. I expected when we went in she would in fact be cleaning his ears out. An odd thing and I was a little worried she was doing more than necessary just because he has never had an issue with his ears. No one has ever mentioned anything in regard to his ears unless it’s asking if he can hear. It appeared he could hear just fine. In fact the health of his ears has been awesome because my older kids had constant problems with their ears when they were little and it was a nightmare.

                We pulled into the parking lot and Phillip went into meltdown because at this point he has an intense fear that has grown towards clinics.  A fear largely based on touch and the process of checking his vitals. After wrestling him into the lobby I took him into the bathroom as his screaming was a lot for the other people to take and the receptionists couldn’t use the phones he was so upset. He didn’t stop and for a moment I thought, maybe we should just leave and call the whole thing off. I couldn’t imagine a little ear wax was worth what I was putting him through but they called his name so we pushed on. The whole time I am wondering if any of it is needed in the first place. Sometimes you run into those doctors that just go a bit overboard and other times you run into the ones that don’t do enough.

                Finally Phillip calmed and his doctor said it was time to clean out the ears. I wanted to leave the room at this point but four people were needed to hold him down so I held his arms, one nurse held his legs, and another held his head. In the meantime I am fighting back my tears successfully by the way. When the doctor pulled out the problem all of us were blown away by the extreme blockage in the first ear. The next ear was no different and that is when all the doctors that I have encountered in the past year flashed through my mind and not in a positive way. I would have put an R rating on this blog if I told you exactly what was going through my mind.

                I asked his new doctor why on earth this has never been mentioned to me by any other care provider. It’s a problem I can’t see, he never expressed discomfort and I imagine because he was used to it. He probably felt that was the way the world was supposed to sound. The doctor eased my anger a bit by telling me things work out for a reason and she is actually pretty skilled at removing the problem so it may have been better she did it than a doctor who could have harmed him. Good point and she was right but that didn’t exactly take away my disgust. That would mean 1 in 5 doctors are skilled enough to remove ear wax…think about that. Scary thought isn’t it?

                I have a child who can’t speak clearly and he has made huge progress. I also have a child who I have been told needs hours of speech therapy so my question was how can doctors push this and not address a hearing issue? Of course he is autistic but how in the world is he supposed to reach the speech goals they put on him if he can’t hear the words properly?

                I don’t care if a doctor would have said to me, he has blockage in his ears but I am not sure I am the one to remove it, let’s send him to someone who can. The slightest mention is all we needed to help him. I spent the better part of the day making myself physically ill thinking about how long he may have been dealing with this. Thinking about how so many care providers knew he was challenged with his autism and let him walk away with a separate challenge of not hearing well. I thought about all the things doctors have avoided simply based on his autism and not wanting to deal with him because yes it takes 4 women to hold down a 28lb boy. How many things I have had to figure out on my own because medical providers don’t seem to know how or want to. He used to get constipated for weeks a time and each time I mentioned it, well it was just a part of autism they always said. Not so, but I can say that problem made his autism much more difficult to manage. No one helped me figure that out for him other than sleepless nights and reading a ton of information.

                So many people are just flying blind with autism and not just because it’s a mystery to parents but because it’s a mystery medically. People wonder why autism parents grow so frustrated with finding quality help and this is one very good example. We do now have someone who is not willing to just let us walk out of the door blind to an extra challenge that isn’t necessary, and thank God for that! That doesn’t mean she understands autism completely it just means she isn’t afraid to deal with it because his quality of life is the priority. Then again aren’t we supposed to feel that way about the majority of our medical care providers instead of the minority?

                When we left the clinic I turned on the music in the van to the classical Phillip likes and his eyebrows went up like he hadn’t heard it that way before, meaning clearly. He stopped in the backyard because some small birds were in the tree chirping. He stood and listened to them and gently touched his ear. The loud sounds he typically makes all day are gone as of the last 24 hours and I can whisper I love you and get his attention. He would have typically ignored all of these things and most people would have said it was because of his autism which he still has of course only now he has autism and a new level of hearing. One good doctor who saw his quality of life as priority was all it took.

               

If autism is a genetic mutation...how and why is that effecting so many people?

                I logged in this morning and looked for some new autism articles and I found the same old information that continues to repeat itself. Genetic mutations and another long list of possible triggers, which I feel like I have read a million times before. Then you have the articles about the safety of the vaccine schedule tossed in to add to the information piled up happening in your mind. That is when I decide even looking it up was a waste of time.

                Here is what is comes to mind each time I look up new autism articles. Ok, so we have genetic mutations but I have not read one time what may be causing such a drastic change in genetics across the world. Actually I don’t think I have even read a mention of why or how this is happening and that seems odd to me. People will say the diagnosis is easier now so the numbers have risen but if you take a good look at the numbers and how fast they have gone up that just doesn’t make sense. Twenty years ago autism was 1 in 10,000 and now we are at 1 in 54. A small amount of that could be related to more understanding but there is just no way that increase is simply because doctors are more aware of how to diagnose autism.

                Yesterday I drove by my kid’s school just before school was getting out. The Special needs buses line up first to pick up the kids and there were six buses in a school of around 600 kids. Six special needs buses? I don’t know about you but that seems like a very high number and no not all of those kids are autistic but regardless they are disabled in some form. I do not remember, and maybe my memory is distorted from being an unaware teenager, a special needs program being so large 20 years ago when I was in Junior high school. In fact I recall a very small number of disabled kids in my school. I can look around in society and see unhealthy people everywhere. Not just disabled but physically don’t look healthy. Lately I have noticed the elderly appear to be healthier then our younger generations. My 90 year old grandfather has a better glow than many of the young people I see and let me tell you his mind is healthier than the majority of the people in society as well.

                Yes I would say our genetics are changing, mutating, and whatever else science has claimed is happening but why are these genetics mutating? Why are families with no genetic history of autism or other disabilities having children or more than one child with a genetic disorder? If the odds of having a child with autism are 1 in 54 than the odds of me or dad having that genetic mutation as they call it seem to be incredibly high as well.

                Maybe I sat on my couch during pregnancy and the flame retardant that seeped into the air pulled the trigger. Maybe I got a fever during pregnancy and autism began. Maybe I got to close to the linoleum in my kitchen and autism hit. Or my favorite article of all time, Fat moms, a tasteless and clear view of how ignorant man can be in the title alone. We can put all of these causes and triggers that parents are blamed for in a pile that would be taller than Mount Kilimanjaro and still the science gods of our time cannot tell us why genetics are being altered….and element of the autism question is the one we should all be asking.

               

A nurse who understands autism, can make all the difference in the world!

               Have you ever taken your child to the doctor and encountered a nurse who has absolutely no understanding of autism? Of course you have. I love nurses and they a breed apart for even going into the field of nursing to begin with. I could never do it and I have a ton of respect for the people who chose to be a nurse. It’s hard work to the say the least and when you encounter a nurse that gets it, it makes all the difference in the world.

                When my son had his allergic reaction to an antibiotic I took him in to our local ER. I always tell them right away he has autism because I do think the typical routine may have to be modified from time to time. Checking vitals can be a horrible experience for child autism and especially a child who is already in distress. I have encountered nurses who just don’t get it at all and the goal is more important than any reaction to the process. The day I took Phillip in to the ER he was becoming lethargic, fever, and didn’t even want me touching him on and off. The nurse decided the best way to check his pulse was to go by of his big toe. It took both of us to keep him slightly still and his discomfort level was through the roof. After what seemed like forever and getting no results other than screaming another nurse walked in and took over.

                This nurse completely understood what was going on and simply ended the madness. When she stepped in it was like an angel walked in the room! She looked at my son and just flat out said…”It’s ok to move forward in this case, let’s get you to a room.” My relief was immediate and so was my sons. Touch is such a huge fear for him if he doesn’t know someone, forced touch anyway. The first nurse was really trying to do her job the right way but at the same time she didn’t understand the actions of my son were not from being sick, but from that fear of forced touch from a stranger. The second nurse took over that day and it was a horrible ER trip in general. He had to be checked for a bladder infection and it took some convincing on my part to not give him a shot of antibiotic before the check, which could have led to a much worse scenario. I stepped out of the room that day for the first time in 14 years of being a mother but that nurse was in there and her understanding of my son was the miracle of the day. To her this was not just an uncomfortable child with a stubborn streak. He was in her eyes a child with autism and she knew what that meant. These amazing people are much harder to find then you would think and they stand out in a powerful way.

                This was not our first ER trip and before Phillip was diagnosed we spent some time in the ER and I learned much later every nurse there that day felt he was autistic but it wasn’t on his charts so they broke the rules a bit and treated him as an autistic child. I was still in denial but thank God they could see what I didn’t want to at the time. If they hadn’t modified there plan of attack that day we wouldn’t have gotten through that trip as graceful as we did. Without a diagnosis the rules would have been he needed to go potty before we left, but they knew if he was autistic he wasn’t going to do that until he was in the comfort of home so they let us go and as soon as we got home he was back on track and I called to let them know. They all knew I would call to tell them that because they all knew he was autistic without it being on the paperwork.

                The first encounter in the doctor’s office sets the mood for the entire visit and we have had some encounters that have set a very bad mood. Leading to an intense fear that has not gone away but I tip my hat today to those nurses who get it and work with it. They are not just a nurse but for a child with autism they can be the angel that just walked in the room.

               

Random adventure needed!

                Yesterday I was bored, bored right out of my mind. The fact my son is hard to take places and can be so unpredictable leaves us at home way to often and yesterday around noon I got a sudden burst of not today! We have a free Naval Undersea Museum nearby and a museum is not the best idea but my desire to get out of the house was more powerful than any challenges we would face.

                Of course when I started to get things ready to go Phillip decided to have a defiant three year old moment. Not a good start to my random idea and I could see the older kids were not thrilled this was how things were beginning. After a half hour of trying to get clothes on the little man and wrestling him into the van we were off. I had one child who wanted to stay home and her protest was coming out on her face in the form of extreme misery. I had another child who was sure a museum was a very bad idea and seemed a bit confused by our all of a sudden adventure. The third child was snug in his car seat with crocodile tears resting on his face and I had no idea where I was going but I didn’t care as long as we were driving away from the house together.

                Once we arrived at the museum I was relieved to see the parking lot was a wasteland because that meant Phillip would not be facing a crowd. I had no intention of enjoying the museum myself and my goal was to give the older kids some time to do what they want. I would worry about Phillip they can worry about taking in some history and doing something new. The museum was great and full of very cool things for all the kids to enjoy. Yes, Phillip wandered and never slowed down but the museum was small so the older kids were able to wander off themselves and check things out. With his wandering he was still able to follow and did respond when I said it was time to move on. There was a lot of reading to do and I can tell you I did not have time to read one word in the entire building. I have no idea what most of the exhibits were about but they were cool to see as I blasted by them out of the corner of my eye. Phillip only broke the exhibit barriers twice which I thought was pretty dang good considering access was very easy to all of it.

                After about an hour Phillips wandering became aimless and I could see his focus was changing. We begin with high energy and interest that will still follow and then it turns into complete lack of being able to listen at all. He can’t stop anymore and move on when I speak to him. He just keeps going without acknowledging my voice at all. This transition is why so many people have asked me if he can hear by the way and this is when site and sound are no longer working together. It is also a precursor to being overwhelmed.

                Time to go and the mood of the day changed. We had smiles and talking in the van that wasn’t there on the way over and my daughter’s misery seemed to fade along with my older sons worry.  It turned out to be a successful escape from the house and we all knew all too well how it could have turned out. The moments I enjoy the most with my kids are not grand adventures that cost a huge amount of money. It’s the moments we laugh together that mean the most to me and the moments we are all connecting. I can say my favorite part of the entire day was taking a wrong turn because we ended up on an isolated road and finding humor in it.

                After all was said and done the random adventure was a much needed change from life on repeat. It’s not something I can do anytime I feel like it but feeling like it and needing it are two different things. We needed it.

 

 

Patience that could be classified as a super power!

               There is an element to keeping things at ease for my son that I believe without it, his life would be painful. Patience and I am not talking about typical patience most parents practice but extreme patience to the point it could be classified as a super power.

                I see a lot of people force change in a child with autism and have even seen other parents root them on for being in control and making it happen. I don’t really think anyone is in control when a parent is emotionally exhausted and a child is completely stressed out. Change is so hard for an autistic mind but I have found with extreme patience it’s not impossible and it’s not painful for anyone.  Changes have been eased in very slowly here when they need to be and by slowly I mean months sometimes.

                Everyone has some degree of insecurity when it comes to changes and especially unexpected ones. I personally like change but at the same time my mind has to adjust to it before I feel completely at ease. Autism is the same as you and I when it comes to this but the one difference is the mind can’t grasp it so quickly and easily. I see this about my son and forcing him to adjust as quickly as I can does cause a tremendous amount of stress.

                This became very clear to me when I had the ridiculous idea that I was just going to stop buying diapers and get this boy potty trained. At the time I felt I was going to flat out show him what needs to be done and he will adjust. Looking back on that decision I can’t believe how foolish I was for thinking that was some kind of grand master plan that would work in my favor because it didn’t work in anyone’s favor in any way. As soon as it occurred to me what I was trying to force I stopped the process because the stress I was causing my son was not worth it. We have made a bit of progress over months with the process but only two things have happened. He is now recognizing wet is not fun and he now verbalizes when he is wet and he wasn’t verbal at all when I tried my master plan. Doesn’t seem like much but for him these are huge steps towards a change. I was told by an autism advocate a year ago he was ready to potty train because he is dry at night and if he was not programmed the way he is, that may have been true but I can’t imagine the damage I might have caused if I tried to force him every time I was told it was time by people who don’t understand him. I was also told he would never reach the point of progress he has made without intense therapy with three different specialists that matched a schedule of a grown adult’s full time job. We never made it to the second appointments for that because the people involved did not understand him and he regressed immediately. That may have been the right approach for another child but not this one.

                My point today is change is hard and yes some changes just have to come fast and we have to deal with it the best way we know how but some changes are ok to take time making. Even a very long time if that is what a child needs to ease into a secure feeling. One thing at a time and that one thing can be small to the eyes around you. If you have overcome one small step towards the goal it’s not small to a child with autism, it’s huge! Not only is it huge to feel secure enough to make one small step but huge in a child’s security in how we can help and understand. In order to feel at ease with the change my son has to feel ease with me and anyone else who is helping him move forward.

                Move forward at a pace that works and that pace might not always be what you are told. Nothing is completely clear when it comes to autism but communication comes in all forms. If a child is regressing, lashing out, and showing clear signs of stress….slow down, slow way down. Pull up that patience super power and use it because the result is more than worth the time.

               

Say What? A dose of humor for the day!

                  A little humor today because I need it and humor is therapy. Since Phillip was diagnosed I have heard some of the most interesting things come out of the mouths of people around me. I have a file in my brain I call the Say What file. It sits in there and gives me a giggle from time to time so today I share some of the Say what’s in no particular order but I will begin with my all time top Say What favorite.

                “No one knows the direct cause of autism, but they say two smart people get together and have a child and there you have it, autism.”

                “You’re not going to medicate him are you?”

                “I knew he had autism, I just never said anything.”

                “Have you tried discipline at all?”

                “He just needs to get out more; it might open him right up!”

                “One day he is just going to open his mouth and start talking and you’re going to wish he never started.”

                “You need to spank him. I will do it for you if you want.” (I like to think this person was joking)

                “Have you tried showing him how to use the toilet?”

                “Jenny McCarthy cured her son, you should read her books.”

                “40 hours of therapy a week is not too much for a two year old. It’s what is required with autism.”

                “Constipation is just a nasty side effect of autism; there isn’t much you can do about it.”

                “To be honest with you, boys are just slower than girls; everything takes them longer to learn.”

                “He is so cute! You can’t even tell he is autistic.”

                “You know, Einstein had autism to.”

                “I hate to reference the movie Rain Man, but in Rain man….” (Fill in the blank)

                “You’re mourning your child. It’s like you got a plane for Paris only you landed in Holland. Holland is nice but what happened to Paris?”

                Now that I have shared my Say What mental file, and hopefully someone got some giggles out of that, it’s important to realize just how different raising a child with autism is. We can ask for acceptance and awareness but at the same time we have to acknowledge it is not so easy to understand. People really do need a little help to at least know it’s not just a difference in our children; it is really a different way of life.

Worm therapy for autism?

http://www.foxnews.com/health/2013/01/21/study-looks-at-worm-therapy-to-treat-autism/

                Interesting article to check out above and although it seems a little scary, there are elements in this article that makes sense to me. Worm therapy freaks me out a bit but the mention of immune system abnormalities is one I am totally on board with. My son’s immune system has always been a question in my mind. Today I am going to tell you why in detail, a description I have avoided because I don’t like it to be direct but if I am going to make any point about the immune system it’s an important part of our story to share.

                Phillip had some sensory sensitivity as a baby. Quick and loud sounds would upset him and he was set in his ways. I breastfed him and he refused any form of bottle no matter how many I tried. He didn’t like to be held by anyone but his immediate family. That being said he was also advanced according to our medical charts. Each well check he passed with flying colors and he was beyond his age as far as progress. The only thing he fell short on was weight and it was a never a concern. He was talking, fine motor skills were awesome, and everything else was up to par. In fact dad and I would take him in and fill out the papers with a huge amount of pride in our above and beyond little man.

                Here is the part I believe we fell short on knowing his immune system was different. Before I go further I will tell you this is a day that will haunt me for the rest of my life. At 15 months I did not take Phillip in for his well check as he was perfectly healthy and I procrastinate. So I held off and eventually took him in around 19 months. I was told that day he was due for shots and I knew that because I gave him some Tylenol before we left. However I hadn’t had children in ten years and the vaccine schedule along with number had changed. I was told he needed a high number that day and I asked if that was ok to do. The answer was, “it’s better to get it all done today then to make him suffer again soon”.  I agreed to it.

                I will never forgive myself for that moment in his life, never. I am not against vaccines at all and I understand why they are important but what happened that day is not ok. He was given 6 shots all together and keep in mind he already has some sensory issues so high possibility he had an immune system difference we were not aware of. I did not understand what sensory differences were at the time and wish I had known back then what I know now.

                You see I took my son home that day and he slept most of the day, typical reaction for shot day. The problem is he faded and he didn’t come back. He stopped eye contact, he stopped laughing at silly things, getting his attention was impossible, and yes I can pin point it to that very day. A mother knows when her child is in distress even if it’s not an emergency situation. I watched him fade and just thinking about that day puts a squeeze in my chest. I don’t blame vaccines but I do blame the medical community for being careless when it is there job to protect and keep my child healthy. I am supposed to trust them and they are supposed to have more knowledge than I do. Only now do I know the vaccine schedule is only in place for people like me, who procrastinate. The CDC has not one medical explanation for the push, not one.

                Phillips next appointment was a couple of months later and this time he failed all of the tests for progress. Didn’t just fail he regressed back to 6 months old and this was the appointment the word autism came into play and I burst into tears in front of my doctor. Uncontrollable tears I could hardly talk through.

                In my sleepless nights of research and trying to put things together I understand my child was possibly born with the autism gene. I also believe the autism gene carries some immune system differences that don’t allow him to process as expected. That’s our story and it has taken me along time to accept it because I don’t like it. I even denied it for a very long time because it means I led him to it. You will even find in the beginning of my writing my denial in full force.

                Everyone has a different autism story and I respect each and every one of those stories because I do also believe autism comes into life in a different way for everyone. Some would say to me, vaccines don’t cause autism and I agree, they don’t, but the immune system certainly plays a role. The sooner those immune system differences are figured out, the sooner some challenges can be addressed or even avoided.

                I have also sat down a number of times to write this only to stop and keep it to myself because I know how people feel about the ugly vaccine debate and didn’t want to be perceived as an angry vaccination hater. The article above is interesting and a little scary but at the same time adding it released this story from being trapped in my mind. Trapped is exactly how my son’s autism was described to me the day he was diagnosed and if he is expected to bust out of the trap, then I need to follow his lead because he is doing a phenomenal job with his progress.

                If one person reads this and proceeds with caution, is able to address an immune system difference before it’s attacked or even just can relate to the story, then I have made a little progress of my own.

               

Constant focus on lack of ability

                 We are still in the waiting process to get Phillip into the local autism center and I have now learned he needs to register in the school district even at three years old. New concept for me as I thought we had more time for the school issue and not sure I am totally on board with it yet. Just simply going to the autism center every day is going to be a very new piece of his routine and he is going to need time to get used to it. There is no way to tell how that will mix him up at first but of course in the long run it’s going to be a wonderful thing for him.

                I don’t know what the district plan is and to be honest I have taken my time filling out the paperwork to send back. I have some mom anxiety kicking in and holding back a bit as far as the school district goes. Won’t be able to hold back to long because I know he has to go, but my mind is telling me one thing at a time or it’s going to get ugly. I hear the same thing from each person on the phone and it is this, “the more interaction the better, and the sooner the better’. True statement and it’s proven.

                There is a common approach with autism and it comes off as a rescue mission. As much intervention as possible and as fast as you can get it. Not a bad plan and necessary for progress but at the same time I have seen my son make huge progress in the last six months by going at an easy pace. I have a hard time with the attack rescue mission that is put into place and not because it doesn’t work, but because each case is not the same. So my brain asks why each case would need the same approach. We tried the attack approach in Montana with not the best services by the way and he regressed very quickly. It wasn’t working for him at that time and maybe it will now but then, it was a nightmare.

                In the last few weeks I have spoken to a few different people trying to arrange services for Phillip. Each time I tell them his diagnosis report from May of 2012 is not a completely accurate description of what is going on with him today. Still autistic of course but he has made real progress and back in May we weren’t getting much response from him at all but every time I say this I get slapped with doubt on the other end. Meaning they don’t seem to believe me because without that rescue mission in place he can’t possibly have progressed in the eyes of some therapists. After all that is what we are all told with autism.

                I have a huge desire to have him evaluated again but it’s not because he will not be autistic. it’s because we have spent the last year and a half filling out papers and answering questions in regard to what is not doing. An endless parade of feeling like our child is lacking ability and this is also a never ending psychological beating for a parent to face. Each time you check no instead of yes on a questionnaire or a doctor asks an age appropriate question you have to say no to, you sink a bit for your child. There has been a never ending focus on what he is not able to do and that alone is enough to put a parent in the fetal position crying in a corner at the end of the day, even if you know the system has an outline every kid on earth is fighting to keep up with.

               Most of my near break downs have not been from the challenge of autism, but the doubt and constant focus on what my child is not able to do kills me. Most, becuase I can't lie some of my difficult days have been just from the challenge of keeping up with my son mentally. Physically I am keeping up but mentally I have stay one step ahead and for a child who is considered disabled this is extremely challenging! Aside from the physical problems some families endure I have often wondered if autism is considered a disability simply because the general population is unable to grasp how the mind of autism works.

Ten things I love and ten things I don't.

                Today I am listing in no particular order ten things I love about autism and ten things I do not love about autism.  

Loves

1.       Routine. I can say life is actually easier with a strict routine. Something I have never had in my life. It is as good for me as it is him much of the time.

2.       Laundry. I have a very small amount of laundry that I can blame my son for. He only wears clothes when we leave the house and doesn't get very dirty.

3.       Detail. I now live in a way I am forced to notice detail or I might miss an important clue to how my sons mind is operating.

4.       Groceries. My grocery list is limited to what I know he will eat and that leaves almost no room for waste.

5.       Little moments. Little moments used to be the general idea of what kids will do during a milestone, now the little moments have nothing to do with prewritten milestones. They are based completely on the smallest moment my son overcomes something, no matter when and no matter how.

6.        People. It is much easier to see good people when my child is acting in a way society doesn’t approve of. It makes who is who very clear.

7.       Knowledge. I have gained more knowledge in the past year than I ever could have imagined. Learning is growing and I have grown a whole lot.

8.       Finding Nemo! I had no idea how many times I could watch Finding Nemo and never get tired of it.

9.       Family. My son having autism brought me back to the family I should have never been far away from to begin with.

10.   Autism. It is strange how something that could potentially break a mother’s heart give you more strength, awesome people, a more open mind, and a healthier outlook on life in general. At the moment they tell you it feels like the end, but it’s more of a beginning.

What I don’t love

1.       Routine. As much as I like it, I also grow tired of it. I actually have a love hate feeling towards the constant routine. It can make life much easier and much harder at the same time.

2.       People. I had no idea how many people in society could be so judgmental simply by the actions of a toddler. The expectations of complete strangers are mind blowing to say the least. The standard many people hold a parent to is unrealistic autism or not.

3.       Medical information. I do not like that many doctors are asking parents more questions than parents are asking doctors. It’s not supposed to work that way.

4.       Constipation. My son doesn’t get constipated anymore but every time he is physically uncomfortable doctors always wanted to blame autism instead of addressing the discomfort. It makes me wonder just how often autism takes the blame and kids leave a doctors office in pain when autism aside, there might be a way to help.

5.       Vaccines. I do not like that vaccine info is so unclear and no one is 100% positive on the issue.

6.       Resources. Lack of and waiting is a huge problem. Topped off with wondering if the resource you find will be sufficient when it begins.

7.       Waffles. I do not like that I know I can’t run out of frozen waffles.

8.       Crowds. I know my son will become overwhelmed and this has in fact handed me some unwelcome anxiety but nothing compared to how my son feels in a crowd.

9.       Grocery stores. I have decided grocery stores are the leading cause of autism meltdowns everywhere.

10.   Fear. I don’t like that most of society’s judgment comes from fear of autism or just flat out lack of knowing.

Now that I have ten on each side of the fence you might notice nearly all of the things I do not love about autism really have nothing to do with Autism at all. Nearly all of these things are based on society and lack of knowledge. I hope one day I can write this list all over again and will be unable to come up with a full ten things I do not like because all of those things will have evolved for the better. Phillip will one day find a new breakfast food he likes, he will manage in a crowd, his routine will be able to change more, and he might even get through grocery stores in one piece, but the rest he will never have any control over.

Autism awareness needs a big strong bounce!

               Autism awareness, the reason I began this blog, are we doing enough? I am going to go out on a limb here and say no. I began this blog to reach out to people who don’t know a lot about autism and really don’t have the motivation like an autism parent would to read all the medical and neurological information available. I wanted to reach out and open minds so on the outside looking in there would be a better understanding. That and helping other parents not feel so alone and maybe putting into words what they can’t explain to others. I like to think I have been somewhat successful and I do know from being told some minds have been opened. It’s a great feeling when you accomplish what you have set out to do.

                It is not easy to grab the minds of people who aren’t affected by autism yet or even people who have been and just never really understood. It is possible though and I see a lot of awareness being spread that isn’t reaching out and busting down those barriers. I am going to go out on another limb here and good possibility my limb will break with this statement but autism awareness seems to be spreading like wildfire, between autism parents. A great thing, we need each other in a bad way but is it breaking down the barriers like we so badly want for our children? Sometimes I feel like it might not be.

                It seems to feel like a big rubber ball bouncing around the autism world and everyone once in a while a story comes up that gives that rubber ball a big enough bounce to go over the fence where the non effected live. Eventually the ball comes back and continues to bounce around again waiting for another strong bounce.

                The question is what can we do to bounce that ball so hard it just keeps on bouncing around the neighborhood? One thing that comes to mind is simply kindness. People react to kindness even people who aren’t being kind will remember a kind face or word. Another thing that would do everyone some good is realizing each person in this world is neurologically different from the next, Autism or not. I don’t have any answers to community events or a grand master plan to create the ultimate awareness project although in my mind I can picture a modern day, peaceful autism Woodstock taking place. Not going to happen any time soon but it’s not a bad idea that’s for sure.

                What I do know is this, autism awareness needs to bust out and reach people outside of autism to create the understanding we desire or we are really just raising awareness to people that are already aware.  I also know after writing this blog I may need to get out of the house because apparently my mind is set to hang on limbs, bounce a rubber ball around the neighborhood and outdoor concerts.

A good case of the giggles and some "I did its"!

                 Something happened last night that brought tears to my eyes and in a good way. There are so many days with Phillip it just seems to feel robotic. You do the same things and you get typically the same reactions. Unless of course things are mixed up a bit then you really don’t know what reaction you will get, but you hope for the best.

                When I see him accomplish something new I am overjoyed for him but many times he might simply smile or have very little reaction at all. I know he is proud of himself but a display of how he feels is a hard door for him to open. He might yell with a smile, dance, or take off in a run with a burst of happy energy to show his pride but someone who isn’t around him all the time might not know what he is communicating.

                Last night he found a way to make his big sister laugh hysterically. He stood in front of the recliner and tossed his head down on to it. Once he discovered she felt it was funny he stepped it up and decided to run across the room and dive into the recliner. His little legs would fly up into the air and his sister would burst out laughing. Then he laughed himself and surveyed the room to see if I was laughing to. This went on for a quite a while and he was having a blast but it was also bedtime so the fun had to end.

                When we crawled into bed he laid on his stomach with his head up and his chin resting on his hands. He was thinking about the fun with a smile on his face and said, “I did it” laughing at himself. He repeated I did it and continued to laugh harder and harder about his accomplishment of making his big sister laugh so hard. His energy level was still in full gear so getting him to lay his head down at all was not happening so quickly and still he repeated, “I did it” laughing a good hard three year awesome belly laugh. I told him. “Yes you did Phillip, you did it” and encouraged him to put his head down and go to sleep.

                Eventually he pulled the blanket up to his chin and rolled over into his time for sleep position, growing silent. I slowly turned my head to see if he had gone to sleep and there was one more very quiet laugh followed by one last quiet “I did it” then he drifted off for the night.

                The pride he was able express in himself and how long he felt that pride was awesome to see. At the same time he was able to actually communicate why he had such a healthy case of the giggles. It’s hard to explain why this was such an important moment for him but when you see the daily challenges he faces trying to break out of the autism hold, It’s a moment both of us wait for.

                Those are the moment’s autism parents live for! You wait for it, believe it will come, and don’t want to miss it for the world because it makes the hard days just disappear. The door opens just a bit and you get to see your child peak there head out and smile with pride. I accept autism and completely understand autism will not go away but I also know my son is trapped by it. When he breaks free of that trap the happiness I feel for him that he was able to do it gives me tears of joy because I can only imagine how that must feel for him. He can’t tell me how it feels but a good case of the giggles and a few quiet “I did its” explains it all.  

A mirror, ambition, and a good visual created progress

                Today is I am just going to make it simple and sum up some progress around here and just how we have gotten there. Keep in mind we are still waiting to begin at the autism center and he has received zero therapy so far. I can imagine if he had, we may be much further along, but still very proud of him for what he has accomplished so far.

                Phillip has been practicing his speaking daily and on his own. That ambition started with a video called Rock N Learn phonics and reading I bought him for Christmas. A horrible video that repeats in my brain all day long but the appeal is the close shot of a mouth moving to the letters and words. No other part of the face is shown but a mouth and this has gotten his attention to the detail of speaking. He watched this video everyday and with the help of a mirror he practiced the movement of his mouth. 

                In a few short weeks he went from saying just a few things unclear to saying the entire alphabet followed by the sound of each letter and a word that begins with the letter. Not all of it comes out completely clear and he does work to do it but he is doing it! It’s is very cool to me the way he says the alphabet. He doesn’t sing it like you and I would or say each letter back to back. He begins with A, makes the sound, and says apple. Then he moves on to B and so on. He is also working much harder at saying shapes and colors with great success. A mirror and a close visual of how the mouth should move played a huge role in the progress.

                We still aren’t going out public much but we are working on coming in the house without an hour long protest. This is working similar to what our routine was in Montana. We go around the house into the backyard. He plays for a bit and I open the door a few times. It takes at least 3 tries before he steps in with one foot and yesterday he stepped in and stepped out. Today he just stepped in and stayed with no problems at all. A great accomplishment as lately getting him in house has been nothing short of a nightmare for all of us.

                A lot of the progress Phillip has made lately has been entirely initiated by him. I wish I could take more credit but all I can really take credit for is patience. Patience has been the ultimate factor and if it takes an hour to see him step into the house on his own it is an hour well spent. Luckily I have that kind of time and I know many parents do not. On that note I also live in the great northwest and we will see if he is able to change that pattern on our next inevitable rainy day.

               

                 

Even Science needs a little faith

http://www.huffingtonpost.com/david-kirby/post2468343_b_2468343.html

http://www.autismspeaks.org/science/science-news/researchers-identify-24-more-%E2%80%9Chigh-impact%E2%80%9D-autism-gene-changes

                Couple of articles that caught my eye this morning and one I have already shared on my Facebook page. I am just a stay home mom with a little mystery running around my house but that mystery keeps me thinking, even if I don’t have the energy to think for one more second.

                Just some food for thought today and not everyone agrees with each other when it comes to autism and we all know one case is never the same the same as the next. The vaccine debate is always there and lately seems to be gaining some strength but then we have the Autism Speaks article that clearly states DNA is being modified. It doesn’t state even a hint as to how DNA is being altered but could it be there is a connection in these articles?

                If DNA is changing and many things could be causing that, GMO comes to mind for me, which has been outlawed in many countries but our government is too invested in GMO to allow that here. DNA changes and apparently at an alarming speed, then other parts of the body are altered but we have no knowledge of it. Then we throw some vaccines in play and what we could end up with a body that is confused and fighting back and fighting things it doesn’t recognize. The immune system that is already altered goes into hyper drive and crashes.

                Vaccines can be declared safe because in a typical body that has not been affected by this DNA change or other organ differences the vaccines are safe.  The greater population is going to process things as expected but then you have that piece of the puzzle so to speak that does not react the same way. There is no question autism is on the rise and continues to be on the rise. Some say it’s a better understanding in the medical community but as a parent of autism and knowing the difference first hand, that doesn’t fly so much with me. If you live with autism you know it’s unmistakable.

                I think one day the connection between modified DNA, organ structure, and the way a vaccine is processed is all going to come to light. Of course it will take someone brave enough to study the connections, prove it, and challenge the powers that be. Until then school yourself on these elements that really do effect all of us in the long run if not right now.  When you are bombarded with autism cause, even if you don’t want to be, it soaks in and you want to know more. I have heard some of the most ridiculous things from people about autism and I was once even told two smart people are the genetic trigger. One that to this day makes me laugh but there is no doubt a science to autism that hasn’t been figure out yet.

                My son will get through life just fine and he will have challenges but I read so many stories of children who are not fine and their challenges are debilitating for families. We hear all the time that saying “until all the pieces fit” and maybe those pieces aren’t all in the same place. Science has the power to find them and put them together and I pray for that to happen one day because even science needs a little faith to find answers to a mystery.

               

Didn't choose it but damn lucky enough to have it.

               Today is a day the little man has decided lights and clothes are to remain off. Most of the blinds are shut because the neighborhood cats have decided watching my dog go into full blown sensory overload through the windows is entertaining. I feel like I am in a isolation cave and fighting the urge to bust out of the front door and run around the block just to get to feel free for a bit. The reality of that thought is, I can’t run and would probably collapse 100ft from the front door.

                This brings me to accepting the reality of our situation and how that kicks me in the rear at times. Not accepting autism, because I accepted that before we even received a diagnosis, but accepting I have very little control of some things and every once in a while I lie to myself thinking I can control a situation.

                I missed my niece’s baby shower over the weekend and for weeks I told myself I would take Phillip along and all would be fine. Long drive and house full of strangers is a terrible idea, especially when the day belongs to my niece and if Phillip was to go into overload her day might have been stolen by what didn’t need to happen. This reality didn’t hit me until the day after the shower and a hard pill to swallow now that I live closer but there really are some things I just can’t take him to and hope for the best. When I was hiding out on that mountain in Montana I had a completely valid excuse for not being there but now that I am around for certain events I have had to face a whole new reality at times. Even though I know we would have been more than welcome and in a group of fantastic people, in all fairness I know what potentially could have gone wrong.

                There are a lot of things I can take Phillip to and risk it, hope for the best and many times he does excellent, but I also know that is not always how it will go. Tomorrow he has a doctor’s appointment to get a prescription for ABA therapy at the autism center and thrilled this is a step towards progress and I can even say I am thrilled to go somewhere and speak to other humans. This is the life that has been given to us.

                We don’t get to choose every aspect of our lives and challenges happen that are not within our control. Autism is just one of those unexpected challenges I have been given in this life and by far not the hardest. In fact I have learned and been awakened by it in ways I needed to be. I see the detail in life like never before and I am totally aware of everything around me in ways I never was. I thought before autism that I had life pretty much figured out but I had no idea how far off I really was. Now I am absorbing life differently and having to teach my son to do the same, while he teaches me. Yes, I know that sounds confusing but it makes more sense if you are living it. Even though I face some hard realities I have been given the gift of some pretty awesome realities along the way.

                The coolest thing about being a parent is you have no idea what to expect. Much of the time we have no idea what we are doing but the reward when it works is amazing. The moment I became a mom I knew I had a job to do that was bigger than anything I had ever done and with each child that job grew even more exciting and challenging! Yes I could run out of the door and collapse 100 ft away because of my lack of ability to run but crawling back to what I love, know, and understand would be easy to do. I didn’t choose it but I am damn lucky enough to have it.

Boredom is the enemy of a busy autistic mind

               What happens when taking your child to public places is difficult and it’s too cold to play outside? Boredom happens and boredom is the enemy of a busy autistic mind. When his mind becomes idle he expresses just how he feels about that and yesterday Phillip was clearly telling me all morning his mind was stuck on idle. He has plenty of toys and things he could play with but most of those toys don’t require him to figure anything out so he doesn’t have much of an interest for more than a very short time.

                I have spent more money than I care to think about on small pointless toys he either had no desire to play with or investigated it and didn’t care to play after he figured it out. I even have toys he will never touch but in my mind I want him to because I thought he would like them, and they sit.

                After a long morning of screaming boredom I set out to find something that would curb his idle irritation. It had to be something very busy but not too busy. It had to be without loud sound effects and bold obnoxious colors and lights. All of which he doesn’t care for and sometimes the sound alone completely kills the appeal. I had the perfect toy in mind and it was a train table similar to the one he had his intense focus on in the book store the other day and I knew Toys R Us had some complete with train set on clearance from Christmas. They had one and not in the price range I was hoping for but at this point I didn’t care one bit because everything we needed to kill boredom for more than one day was in that box.

                This is how quickly the train table eased Phillips desire to soak in information. As soon as my daughter and I unloaded the one million parts from the box, his irritation was gone. Completely gone and his patience was restored. It took my daughter and me four hours to put this entire project together and Phillip was quiet and content the entire time. Picture a mommy on the edge, a 12 year old who doesn’t understand it’s harder than it looks, very bad directions, and a toddler who spent the morning with zero patience. This should have been a recipe for a complete disaster but it turned out to be four hours of quiet therapy on a bad day.

                When the table was complete, with a few minor setbacks, Phillip was engaged and busy for the rest of the evening. He played past his bedtime quietly and got up this morning to continue his train table adventures. I was counting on his reaction this morning because there was a 50/50 chance he would be done with it, but the odds were in our favor!

                I don’t like this train table. It’s big and I am a slightly bitter about the “clearance” price but what I can’t stand even more is how boredom affects Phillip. His mind is constantly craving things to do and at this very moment he is opening and closing a sliding closet door, keeping a close eye on how it moves across the track above. Just a bit ago he was investigating the labels on everything in the refrigerator door. It is fascinating to me and extremely challenging to figure out what is not enough for his busy mind and what is too much because both elements have a huge impact on his comfort level with the world around him. A challenge so many people are trying to figure out.

I think we all have some autistic traits.

              Yesterday I decided to take Phillip to the book store for something to do. They have a large children’s section and of course they have a fun place to play set up with a train table and Thomas train set. Perfect for his mechanical mind and I thought the quiet environment would be easy for him. As we walk in I know I am not getting him to the back of the store so easily with so many inviting things to investigate. I personally wanted to stop and look around but we had a goal and we weren’t going to get there if I didn’t fight that urge. I picked him up right away and carried him to the children’s section. Once we got there he was in train table heaven. Score!

                Here is when the problem began and I could see it immediately. Phillip loves to see how things work and he will inspect it for a bit then move on but there is a not so fine line between inspect and intense focus. Inspect means he needs a little time to check things over and once he has figured it out he can walk away. Intense focus is broken only one way and it’s not pleasant, by force. I knew the moment he ignored the other children and did not break eye contact with the system of the train tracks we were in trouble. At this point there was nothing else in the room in his mind and even mom becomes totally irrelevant. I was actually full of envy when a parent stopped for a 5 min break and left and we sat through four of these encounters.

                I let him play for a very long time hoping at some point I would see a break in the focus I could jump in and let him know we were all done but the break wasn’t coming. I started to realize the only way out of the store was very far away and knew we were in for a long haul to the van when I grew brave enough to do it. That was when a pack of mommies with strollers built up so large it appeared they were planning for a week long stay in the mall rounded the corner. Each stroller was also packed with loud and excited children, yelling and ready to be unleashed. This intimidating and loud group broke the intense focus, but Phillip also slowly grabbed the two trains he had been focusing on and activated his toddler vice grip.

                He knew things had just become too much and did walk away from the group and the table but he is also a three year old who was enjoying his time and didn’t want to leave. I ended up once again carrying him to the exit that seemed a mile away in full protest. His autism was working against him in regard to the focus and loud mob, but his desire to play was also kicking in. We were in fact in a no win situation no matter how we tried to leave and I knew it long before the mommies rounded the corner. Although they did help to give me a moment of opportunity even if it didn’t appear that way to the people watching us leave.

                I think we all have a bit of those autism traits in us. The desire to touch things we think are cool, the distractions that bother us when we try to focus, the awareness of a busy and sometimes loud world, and the desire to learn what we don’t know. Sometimes we take the opportunity to slow down and really take a look at the world around us but most of the time we are all in a busy rush and don’t see what we could be taking a closer look at. Phillip’s difference has forced me to do this because I would never understand him if I didn’t. His mind just doesn’t allow him to ignore cool things or transition so easily.  Even though I was in fact full of envy over those parents that stopped for a 5 min break and moved on easily, this morning Phillip jumped on his bed and his blankets were a mess. He also fixed those blankets perfectly when he was done without me telling him to, can’t even say I would have. I think if some people could see those positive traits they might have a little envy to.

The sibbling effect of autism

                The sibling effect of autism can be a hard one. A choice they don’t have and I can only imagine when my kids discovered they were going to have a baby brother, a brother with a tricky complicated difference was not what they had in mind. My kids have been the most accepting people I know when it has come to Phillip being different and I couldn’t be more proud of them for that but that doesn’t mean it’s not a huge struggle for them.

                From the time it takes for mom to keep up to the sleepless nights in the beginning and having to get up and tackle school barely able to move. They have pushed through with all the love in the world for him.  I can see the pressure they feel when the rest of the world just doesn’t get it.  Going out in public with him for me is a challenge but I push on and feel cause to celebrate when it goes well but I am an adult and 35 years later I could care less what people think. At 12 and 14 this is not so easy.

                Yesterday we ran some errands after school and my oldest son decided to go home while my daughter came with us to get some supplies for a school project. We went to a craft store and Phillip didn’t handle the processing very well to say the least. Long story short a wall of canvas came crashing down and then Phillips mind came crashing down. I handed my daughter the money to pay and I scooped him up to head to the van. Of course this happened at the back of the store so I had to wrestle him into my arms and carry him out screaming and trying to hit me all the way through. He had calmed a bit when my daughter came out but we had one more stop to make.

                That is when my daughter said to me “how about you go in alone this time and I will stay in the van with Phillip.” As much as I hate to give in to that I agreed. What I had a hard time with was my daughter just not wanting to be gawked at by the public eye and we both knew that was the reality for the day. I hate that sometimes my children really do feel embarrassed by what can happen. They are young and I understand it’s hard but it’s not really Phillip that causes that feeling, its society’s rude stares and the judgment. Knowing strangers are staring at you is hard to deal with and at 12 and 14 even more difficult.

                At the end of the day we are a family like everyone else laughing at a funny toddler, eating dinner at the table together talking about homework and the events of the day. Rooting each other on when the challenges of life are tackled with pride and grace. Even when the days are hard for the older kids they play such a key role in how their little brother sees the world. He is learning love, patience, and care from them just as much as he learns from mom and dad.  No matter what fuels the offer to stay in the car when a hard day hits, it’s the fact he has the love from an older sister who will stay with him when the world has become too much for both of them really.

                Autism siblings everywhere you are awesome in all you do and even though things may not have gone how you imagined before autism hit, your grace and love are teaching something very important. A lesson all of those people staring at you could use a huge dose of. You’re making this crazy world a better place and the adults you will become will not be anything like the ones you want to avoid on a hard day. At a much less number of years in life, you are already much better at living it and showing your younger brothers and sisters how it’s done.