Sanity and a hearty sense of humor!

                 The total chaos of moving is completely in effect, almost completely. I have been loading boxes for over a month and only two days away I feel like enough has just not gotten done. Once you bust through the first layer of stuff it seems there are more layers. The move is not the chaos I am worried about because personally I kind of like moving. It is exciting and gives me a chance to rid of things we just shouldn’t be holding on to. This move is especially exciting for me as we are moving to the place I grew up and since I was eighteen years old I have only spent a few short days at a time. I will have my family close and people I grew up with that I haven’t seen in years. Some people who really did play a big part in my life that I have never forgotten as they are impossible to forget. I have carried their smiles with me for a very long time but having the time to see those smiles in person and catch up will be so much better.

                What happens with Phillip during this move is a total mystery and yes I am worried how he will adjust. The big kids will adjust fine and make new friends with ease. They are in Junior High and I know the school they are going to is a great one with many more things for them to do to keep busy in a positive way. With Phillip it is going to go one of two ways, either very hard or very easy. I have learned during this journey with him to expect the unexpected and never assume anything.

                We will have a much bigger home for him to burn energy and hide in, with a nice fenced in safe backyard to play in. The fence is a God sent by the way and I am thrilled to have that security for him. We will live in a suburban neighborhood with busy streets so the running will be a huge challenge and trying to establish boundaries. It seems like we have finally reached the boundaries here and will begin all over again. The places we go will be much bigger, louder, faster, and overwhelming for him at first and I know this will cause some distress until he adjusts. With all this he will also have more things to do and positive things coming his way.

                For now I know some of the things to expect but my mind is going into limbo until we are actually there and it is unfolding right in front of me. I don’t expect anything from him at this point because I can’t. One step at a time and right now the first step is to drive for nine hours and get to see in person our new home which my amazing mom and dad found for us. The drive alone is enough to worry about and jumping over that worry to the next will for sure send me right over the edge into crazy town. One step at a time with no expectations is the only way to breathe easy and stay calm.

                My next blog will not be until next week when we get our internet all set up. I have no doubt between now and then life is going to throw some interesting things our way. I am really hoping those interesting things bring laughter and excitement but there is always the chance I will take a detour into crazy town along the way. In fact…let’s just assume that is going to happen and hope it makes for a good story. I hope all of you have easy days ahead and until my next blog….please pray for my sanity and hearty sense of humor!

Tin Tin...Main Menu Only Please

              My son has always loved movies that are either Pixar or anything involving antique airplanes. The sound of a plane alone can completely grab his attention and he will totally forget all that is around him. When he was diagnosed they pulled out a small toy airplane and he immediately stood up and started to execute detailed flight patterns with it. Everyone just stopped and watched him in amazement. One woman said it took her breath away to see him do this. He will take one designated plane and spend time just practicing air tricks and making propeller sounds with extreme patience.

                I don’t know why he does this or how it came about but it is very interesting to watch him. About a month ago he started watching Tin Tin and loved the flight pattern of the old plane in the movie. Not only because it was similar to his chosen toy plane but he perfected the way the plane moves in the movie. He started by watching the entire movie then slowly it shortened up to the beginning of the movie that involves the plane the most. The problem now is the main menu. The only part he wants to watch is the main menu with the plane flying around the screen. If I attempt to play the movie he lets me know exactly how he feels about it and I don’t enjoy the reaction at all.

                This morning we have Tin Tin, main menu only, playing on the TV. Phillip is practicing his flight patterns and propeller sounds and I have to say he has mastered both. He has two other old style airplane toys that must be parked in a certain spot on the coffee table at all times unless he is playing with one. If you move one even an inch he will notice and put it back in its proper parking spot.

                On our way to football games yesterday I decided to bring one of these planes along as a backup plan for when he gets restless. The problem was I removed the plane from its designated parking spot. Most kids want to take a special toy with them but he was upset with me when we got in the van. He wanted me to take the plane back in the house and park it on the coffee table. He doesn’t speak and didn’t tell me this I just know.  I knew if I could get him away from the house with the plane he would not be so frantic about the situation. I put the plane in the bag and later on in the day gave it to him, with no protest. He took it and started practicing flight as I expected.

                This part of his difference is so interesting to me. What is it the science that creates that kind of order in his mind? I know it’s autism but the neurological difference between his mind and mine is what I would love to know. My mind is never in order and I have to force it to even come close so the complete opposite and to the extreme is fascinating to me.  Just an ounce of that order would benefit me and just an ounce of my disorder would benefit him.  These extremes happen all day long and many people don’t understand what he is doing but I do. I have to fight to pay attention and he fights to break his attention. A person could say you understand because you’re his mom but I really think a lot of it is the difference to an extreme and a respect I have for it. Society considers my disorder a weakness and his order a weakness but then again society is way too hung up on weakness and needs to focus more on the strength of others.

I must see these little autistic mice!

                 Every day I log on to facebook and there is a tidal wave of autism information rolling in. Inspiration, personal stories, new articles on causes, and ways to raise awareness.  Of course I am connected to all these things by choice so I asked for that tidal wave and it keeps me informed. I like to know the opinions out there and read different perspectives.

                What I see in a lot of the articles I come across is a very negative tone towards autism. Speculation as to why some kids have it, how its growing so quickly in society and it sets a ridiculous tone that autistics are mutants. Really no other way I can think of to describe some of these things I come across. When I am done reading some of them I feel like the mother of the Wolverine from X-men trying to protect him from a world full of fear trying to cure him. Yes, you will see autism described as a genetic mutation all the time and to me it sets a nasty tone. I prefer the words genetic evolution myself because it takes the mutant label off my child. I especially find the articles with mice involved entertaining because an autistic mouse would be something to see!

                I am ADD, a neurological difference, which is how I see autism as well but I have never heard anyone say ADD is a mutation. If it is then I guess I am the mother mutant and my child would be second generation mutant.  It is exhausting, every word of it, and ridiculous in so many ways.

                Seems to me society has decided if they can’t understand it they must find a way to correct it even if understanding would be a much easier process. The millions if not billions of dollars spent to fix people couldn’t possibly benefit them in a educational environment or educating adults to work with autism because we all know there is a desperate need for that. I haven’t communicated with any autistic adults who are sitting around waiting to be cured and children don’t understand the world doesn’t understand them…yet. Autism is constantly quoted right alongside schizophrenia which is a very old and worn out connection that has actually been tossed out as a connection at all. A mistake from way back in history is how that all came about, and fueled by a lack of understanding.

                Here is my plea to all the writers and researchers involved in autism. Leave schizophrenia out of it unless you are discussing the misunderstood history of the difference. Please keep in mind when you write you may have an autistic audience and protective parents reading your words. Make sure your words are directed in a positive way because some folks won’t settle for less. If you could kindly leave rodents out of the matter or even better, please clarify what an autistic rodent is like that would also be appreciated, because every time I read an article like that I am intrigued by these little autistic mice.  For the love of God can we please go easy on the mutation talk unless that is in fact 100% what autism has proven to be and it hasn’t. Last but not least for writers and readers, please remember there are people who are not angry about having autism. Adults and children who want to be treated with respect and some of these articles really do cause harm to how the difference is depicted in society.  

                At this point I think many people are so run down from “suggested” studies, lack of information, false information, and reach up and pull it out of your backside theories we or I am getting slightly fed up with acceptance and understanding being overlooked. The entire reason I began this blog was so my son would not be looked at as flawed or in need of fixing and I will not stop. Maybe one day in our adventure I will get to see these little autistic mice and then I will have seen it all.

Cure For Autism? Nah...We love him just the way he is.

                Is Autism a curse or flaw? Well according to some media our there it could be considered that. Does it need to be cured? Also according to some media it does. I have read the wildest theories that have gone as far as a biblical curse attached to a father's sins. To me this is all crap for lack of a better word. There is so much of it you find yourself feeling like you’re covered in it and you need to wash it off so your mind can get back to a clean healthy way of thinking.

                In this entire bad media, that even some parents of autism are pushing, I always wonder what this is doing to children and adults who have the difference. I know when I come across articles about ADD that push it as a difference that needs medical attention such as drugs, I feel a bit sad. If we go on all the hype attached,  we as a society are trying to medicate or treat everyone into a state of conformity so the greater population is comfortable with our being.

                Doc says take this prescription and see if it helps. If that doesn’t do it we will try something else. Your brain chemistry is too different for others to understand so let’s mix it up a bit and see if we can adjust you. I have had ADD as far back as I can remember and I have learned it runs in my family. When I think back do I wish someone would have treated me for it? No, my only wish is that there was an understanding I needed a different approach. One that helped me to understand myself so I wouldn’t feel like I was defective when I did something that didn’t make sense.  Now that I am older I tend to be grateful for some of the chaos that has made life interesting. I wouldn’t change it in any way. We need to understand difference is not a defect and many adults and children accept they way they are. Maybe one day society in general will follow suit and stop spreading information that causes someone who has autism to feel they aren't OK. Not all people with autism are nonverbal and they do have an opinion on how they feel about themselves. Much like nonverbal who just can't share how they feel directly. Hard to believe but some autistics love being autistic! It's who and how they are and we need to allow them to feel that way because there is no reason not to. There are parents who completely accepting of autism another fact that may be hard to believe but yes, it is embraced all the time;)

                If someone knocked on my door right now and offered me a “cure” for my son’s autism, I would escort them off this mountain in a not so pleasant way. I don’t for one second see my son as flawed or diseased. I also don’t, in any way, feel that he needs to conform to make the greater population comfortable. The looks he may get for being active so to speak are not because he is autistic. It’s because people in general don’t accept what they don’t understand. Those raised eyebrows we get are because of what they see about him but I have no doubt those people have some issues that would raise an eyebrow or two if they had to wear their own differences on the outside for all to see.

                If was asked what caused autism in my son, according to all the information out there, my answer would be…I am old, dad is old, we cut the umbilical cord to fast, we are mutants, the government is after my child, I had gestational diabetes, and dad is a sinner. Or I could answer the way I actually see it.

                Who cares! What I am actually thinking about is how to cause progress and an amazing life for him. He wears his difference on the outside when he gets excited or is trying to process. The rest of us are just pushing our differences down inside so no one can see them.  Which one sounds like a healthier way to live to you?

Warning Label! Abilites! Do not Ignore....

               Yesterday was a day of reflection for me. We have plans to move and I have begun to clean out things we don’t need. Along with that comes discovering things you have. My daughter kept me company while I sifted through boxes full of random stuff and my little man played contently in the dirt, without eating it for once.

                Books, pictures, drawings from my older kids when they were little, and lots of memories came flowing back. Some things carried a memory with it but at 35 years old there was no chance I would recall what the memory was. Or we would find something that gave me a small glimpse like a beach would come to mind and an hour later I would remember a family trip the item came from. Thank God for that hour later or it may have driven me crazy trying to recall.

                In the bottom of one box I found a couple of old cassette tapes from very early on in my childhood. My grandmother on my dad’s side would read books and tell stories. She would record herself and send it in the mail. My grandmother was a very powerful source in my life and passed when I was a teenager, a selfish teenager who never took the time to let her know how she impacted my life. I still remember her like it was yesterday. Her kind lap to sit on and listen to stories she had memorized from books and the enthusiasm she would have when she told those stories that would not allow my mind to wander away from the places her stories took me.  To me she had super powers for being able to hold onto my mind the way she did and even though she was stern and didn’t take any guff, she had a nature that made a child feel safe and home. Even if it was just a visit with her I always felt like she gave me a gateway to a world inside books. She encouraged me to write and write a lot and never stop using my imagination. Until my teenage years hit that is exactly what I did because she had shown me it was a way to slow my mind down.

                 I don’t think my grandmother ever knew how she affected me this way. Even when I come across an old book that may be worth holding onto, I have a rule of thumb. If grandma would have encouraged me to read it, it’s worth keeping. She never knew my mind was always running circles and if she would have it wouldn’t have mattered to her. She would have treated me the same way with no excuses.

                I put one of those tapes in my cassette player, and yes I still have one, and there she was. Her enthusiasm and storytelling came right back to me years later. The smile on my face was literally because it was as easy as hearing her voice again to take me back 25 years or more and feel that encouragement all over again. At the same time I looked at my autistic son whose mind is much busier than mine ever was and remembered an important lesson grandma didn’t know she taught me. Every child has unstoppable abilities no matter what obstacles are in the way. They just need a cozy lap to sit on and a quiet voice to help them pull it out and use it. No matter what the world has labeled us with, the ability should never be overlooked.

                What if we lived in a world we didn't label what is considered a flaw and only had labels that gave everyone a warning as to what we are capable of?

ADD and SPD Helping Each Other.

                Can one disorder help another? Yes in my opinion and experience it certainly can. I have had ADD (Attention Deficit Disorder) as long as I can remember undiagnosed and disorder really would be the correct way of describing it. Constant disorder and it took nearly 35 years to acknowledge it. Of course I didn’t begin that process until not too long ago and so much of my life has been consumed with chaos, quick decisions, not getting things done, and on the positive side, adventure. I had just accepted I would always be this way. A way that made teachers repeat the same comment to me over and over. You lack focus is what I was always told. You’re not trying hard enough was a constant as well but my response in my mind was always “maybe you’re not teaching good enough” because the teachers that understood my lack of focus never lost my attention. No matter what I was always judged and never understood.

                When SPD (Sensory Processing Disorder or Autism) came into my life I had to adjust in several ways and keep up my son in ways I never imagined. My dad and I giggled on the phone the other day about how I have had to adjust from my difference to his. Of all the things God has thrown at me and I have looked up to the sky and said “I sure hope you know what you are doing” this was certainly one of them. Just hearing the words schedule, organize, plan ahead, and repeat made my head want to explode and convinced me God really does have a sense of humor to throw this challenge at me.

 I require no order whatsoever and my son requires order 100% of the time. I have spent my entire life not knowing what will happen next and to be honest I enjoy that. Not an option with SPD, what will happen next is very important for him to feel at ease. I have almost zero planning skills or so I thought and now I find myself on edge if a plan is not in effect.

All kids require a certain amount of all of these things but with SPD it can seem a bit extreme. Maybe extreme to one person but creating a balance for another person. In the beginning I was very overwhelmed and worried I would not be able to do for him what needed to be done. It seemed like so much of what I was not made of and how would I ever be able to get my mind in the order it needed to be in for him. Well, slowly it just started to evolve in a positive way because I had no choice. If I didn’t find a way I would never be able to understand him. On the other hand my ADD has given his SPD benefit to. I know it’s ok to push some limits and step outside the box and that he will need to learn that in life. Adventure is to important to run away from and I want him to be able to embrace it even if it requires some change and disorder.

Could it be in a world full of medications, interventions and judgments two differences that are complete opposite of each other also are an answer to strengthen each other? In the case of my son and me the answer is yes in so many ways. Two labels considered a flaw in society that actually needed each other to create a balance. Now there is something to really think about!