The hurricane of autism video

Sometimes he seems to just break through...like he knew how all along.

                 Last week I wrote a blog about routine and the isolation of an autism parent. On a side note of that blog, we all still want the invite! We just want others to understand when we have to say no. I noticed a drop in my own life of invites and wondered if that was the cause. It could just be my personality but I going with the blog because that would mean someone is actually reading it. LOL all in good humor and on to the days babble.

                 Phillip talks a whole lot of gibberish. Always has really and the words just have taken a very long time to come together. Rarely does he use two words at once, in fact never, and even though I talk to him like we are having a conversation, it’s really one sided. Many of the sounds he makes are swooshing sounds or his face appears to be telling us something very clear but his words just don’t make any sense.

                When a moment comes that is clear and that verbal connection is made it is the greatest feeling in the world and you cling to that moment with all your strength, just in case the next one is far off or it was a fluke.  Last night Phillip and I were going through his bedtime routine and saying goodnight to everything we could see while walking up to the bedroom. He just grins and goes along with it but honestly it’s me saying goodnight to everything and he is just entertained by it. We crawled into bed and all of sudden he looked at my face, smiled and said…”Happy”. Yes I made sure to ask him again to say it just to make sure that was what just happened and he did repeat it with a smile. It’s a moment that is nearly impossible to put into words when you rarely hear any words from your child and a word that is based on feeling, a good feeling, is amazing.

                This morning I was greeted with Phillip once again making his swooshing noises and giggling. He will take his hands and move them around with the sound and I can say I have no idea where he got this or why he does it. I can tell you he attempts to say Mashugina which is Yiddish for troublemaker and sort of family joke around here. It doesn’t come out clear but a bit funny that difficult word is one he attempts and has that SH sound to it he likes to try.  While he making his swooshing sounds I was trying to guess what he was saying. I asked him if he was trying to say Mashugina and he shook his head no repeating the sounds. Then I said to him…”is it the motion of the ocean?” That is when he completely stopped, looked at me and said…”huh?” with his little nose crinkled up on one side.

                In an attempt to desperately figure out what he was doing and no I still have no idea there was another moment of communication and the fact he responded the way he did was a complete success in a mind boggling and somewhat frustrating moment. Moments like that open the door to knowing more will come. Maybe not again today or even a month from now but it will come and when it happens sometimes it seems as though he knew how all along it comes out so easily. Like he broke through whatever it was that was holding it back.

We don't 100% know what's safe, but science can grow us an ear?

                That dang vaccine debate crept up on me this morning and if you have autism in your life this is a topic you can almost never avoid. I personally am on the fence of the debate watching people get mad at each other from both sides and the interesting part is both sides are right.

                On the one hand you have the vaccine this people with a big middle finger up and on the other hand you have the vaccine or die people with another middle finger up. Are either of them wrong for feeling the way they do? No, not at all. To many vaccines to fast could have a highly toxic effect on a complicated immune system and the CDC has stated they do this to simply make sure children get the vaccines. Then again not vaccinating realistically could carry the risk of potentially deadly disease, so either way there is risk.

                The problem is not necessarily to vaccinate or not to vaccinate. The problem is conflicting, lack of, or incorrect information. One day we hear mercury has been taken out of vaccines and a year or two later we discover that wasn’t exactly true. We turn on the news and the media has reported deaths from influenza or H1N1 so if you are pregnant you must go directly to the local clinic and get vaccinated or your unborn child could die. We do it because we are afraid but then we see reports of high mercury levels in that first round of vaccines. It’s fixed now but back then it slipped by the CDC…oops.

                I will never forget the day I went to the clinic to get my Swine flu vaccine. I was 7 months pregnant and some of you are actually already gasping at that sentence. I received a call from the county nurse telling me they received enough vaccines that day for the elderly and pregnant women, who we were told were highest risk. That we all know was a true statement. I hurried down and while I sitting in the lobby another woman was sitting across from me also 7 months pregnant. This women and I started chatting and she asked me if I was there to get my Swine flu vaccine. I said yes and she looked me dead in the eye and said to me…”You’re crazy, no way would I do that right now”

                I had no idea why she said it at the time but now boy do I understand her comment and then some. Now that my son is three and has autism, which has forced me to gain more knowledge then I ever knew I would have, would I tell a woman who is 7 months pregnant to go get a flu vaccine, Swine Flu vaccine, H1N1 vaccine, or take Tami flu? The answer is no I sure would not. I am not a medical professional and don’t know a whole lot but I do know the unknowns and open ends are frightening for a parent. I actually ended up with the flu anyway while pregnant right along with high fever and to boot gestational diabetes. All of which science has tried to point to in regard to autism. So I can’t say the vaccine did anything dangerous to my child because I don’t know.

                We need to fix these unknowns! We have science that can grow a human ear on the backside of a mouse but we can’t lock down answers we need. We can get online and find hundreds of articles saying a vaccine is dangerous and then we can find hundreds that say they are not. All of which seem to hold some truth but no firm clarity. Science can create a virus that hits our population like a freight train, Swine flu man made by the way, but can’t seem to treat it in a way we feel 100% confident in.

                The point to my blog today is no matter who holds what opinion always try to remember everyone holds a bit of wrong and everyone holds a bit of right. Hopefully someday science can give us that clarity we all need and until then we know we can always get an extra ear if we need it!

The Parenthood Gestapo strikes again!

               As much human nature makes me ill sometimes there are so many times it makes me laugh. Today Phillip and I made our first trip to the post office which I knew was a potential challenge simply because there would a line to stand in. Phillip doesn’t do lines and I mean he really lacks the ability to stand still in that kind of order and be patient. It’s one of the things I am hoping the autism center will help us with although if they have an answer to this little conflict I will be shocked. At this point it feels like it’s going to take time and some maturity to grasp. 

                So we walk in and sure enough there is a line of maybe ten people and being I am trained, I survey the room immediately. Looking for two things and the first was if he could get out. The answer to that was no and it was a room small enough I could still see him no matter what. Second was if he is free to roam can he dismantle anything and again the answer to that was no. Off he went and I stood in line watching to be sure all he was going to do was run a bit. That is exactly what he did and was talking his own little Phillip language while he investigated every corner of the room. He was paying no mind to people because that is his last interest in a new environment to explore. He was also no more than ten ft from me at all times which I considered a safe distance with no dangers in site.

                That’s when I felt it…the eyes of judgment beating down on me like the parenthood Gestapo. I am used to this and it’s just part of life. I did think in a bigger area Phillip would blend in a bit more as I hoped autism awareness was more prevalent but it’s not. A lovely couple ahead of me offered to hold my place in line while I gathered my unruly child. I declined and thanked them explaining that if I can see him he is fine with no way out. The look of shock on their faces was a quick one but what I really wanted to say was….then what? Yes I could scoop him up and demand he stay in line like an obedient three year old should but I knew the judgment would grow much harsher from simply trying to get him to stand still. At one point I could see from the corner of my eye an older women actually lean forward to get a good look at the mother who was allowing this behavior to continue. I turned and smiled at her which she returned to be polite.

                Phillip wasn’t doing anything wrong I have to add. He hadn’t touched one display or caused any problems. He was simply just walking around making noise with a smile on his face and laughing at himself. I would say he was being a very good boy for his first trip there and having to wait but society always has an idea of how we all should do things. If we aren’t keeping the order of social expectations you stand out in a way some people don’t like or it just makes them uncomfortable. Soon a group of three was watching him and one of them covered her mouth and whispered to another. The talk went down the line and I had no idea what they said to each other but I did know it pertained to my son.  Could have been good and could have been bad and it doesn’t matter.

                Whenever a situation like this comes up Phillip becomes my mentor. With all the eyes coming down on him and the whispers being tossed around, he remains totally unfazed by how unintentionally rude people can be. I am told this is something about him that needs to be fixed and I can’t even force myself to agree with that.

                He was laughing, jumping around, and smiling with that social miss autism can have but at the same time I am so very grateful he missed it. Whatever was going through his mind in that room was so much healthier and inspiring then the socially intact Gestapo that was waiting for me to create the order expected. So why does this make me laugh instead of cry? Simple really….it was a room full of people who could have learned a lot from a boy who could have cared less what they thought. After all he and I were the only ones smiling and it wasn’t to be socially polite because we were smiling at each other.

For instant smiles...you must see this!

http://www.liveleak.com/view?i=ba6_1356372323

    If you haven't had the privilege of seeing this fantastic kid slappin beats on a washing machine you must check out the link above for an instant smile! We see a lot of videos of very cool things autistic kids are doing but this is one that really put the biggest smile on my face. Phillip is very into sounds around the house and investigating them so when he caught a glimpse of this young man making music on a washing machine his reaction was priceless!

     He instantly stood up and began to laugh hysterically then he started to move his hands trying to mimic what the boy is doing. It's one thing to see something cool and another to see the smile on my sons face as though he completely understands why the boy is wanted to do it.

     For instant smiles click above and be sure to catch the grin on the boys face, because it will make your own smile just a bit bigger.

     Merry Christmas and may the joy of Christmas flood your homes in a way you can't escape it!

The isolation of an autism parent

                Isolation of the autism parent is a topic that came up today on facebook and yesterday I actually did sit down to write about this with a blank mind. Today I decided this is a very important topic so others can understand, at least in our case, why we tend to isolate. I have grown used to being somewhat isolated at home but that doesn’t mean I enjoy it day in and day out.

                When I am invited somewhere I tend to ask myself three questions. Is the situation something Phillip can tolerate even for a bit? Will there be a large crowd and is there an escape route? Meaning if Phillip begins a meltdown can I remove him from what has overwhelmed him quickly because once he is all in, I have no power to help him. I suppose I could skip thinking about these things and just jump in and see what happens but there has been so many times we have ended up in a public place completely overwhelmed and no way to escape, with an audience building. That is a very difficult place to be and we avoid it if we can. Unfortunately avoiding it does lead to isolation.

                I think many people understand this element of raising an autistic child and public outings but then there are the times I get invited to go somewhere and I would have to leave Phillip with someone else. I can do that for a short time but overnight is out of the question. Last night a trip to New Zealand came up and I was invited. Only a crazy person would decline an invitation like that but I had no choice but to say no.

                The routine for my son is important and yes the routine changes. We just moved very far from what he knew and he has adjusted well but there has also been a key element in the move that stayed the same….me. For the most part I can read his physical cues so meeting his needs is not impossible but this has come with being with him every day. Sometimes even family members who are around him all the time have a difficult time and honestly I can’t say I always know what he wants. No matter how many changes were to come his way having the routine of me there with him, even during hard times, helps to ease him and get back on track. If I were to take off for a vacation or overnight adventure his line of communication and routine is broken. The impact is not one I want to discover at this point in his life. This can be viewed as paranoid or coddling my son or even a lack of trust in who could care for him but it is none of those things.

                I trust every person in my life to care for my son and know he would be safe and loved, but at the same time there is a processing limit he has. I can see the signals that he is reaching that limit and know when it’s time to go and get back to the isolation we have grown used to. His routine is not something I could write instructions for and take off because many things are signals and processing elements tossed in with lack of communication and the simple fact of being a strong willed three year old.

                That being said, it would be cruel to take off for a New Zealand adventure just because I want to. Cruel to him and cruel to the brave soul who stepped up to care for him because the routine is not just a dictated order, it’s a daily connection with each other. This connection is one reason I shake my head every time I hear someone say autism doesn’t build emotional connections. I can say from three years of daily interaction my son’s emotional connection and attachment is so strong it’s nearly impossible to put into words others can understand.

                For those who invite an autism parent somewhere and they decline or leave early it may be a bit more complicated than it appears to be and for those who have had to decline or leave early, the adventures will come. For now try to remember the ability to understand your child like no other is an adventure beyond words that many people wouldn’t have the bravery to jump into with love and grace.

My respect to autism service dogs!

 

              The house is growing quiet little by little and today I sent the big kids off to Montana to spend the Christmas break with their dad. This was the first time they have flown alone and you could say nerves were getting the best of them. Made if off though, safe and sound. Next week dad heads back to Dutch Harbor Alaska for work and then things will really be quiet...probably to quiet.

                Maybe I am a little weird but I like going to the airport because in all the chaos there are so many different people. You have soldiers, families, business travelers, and I noticed a lot of kids traveling alone for the holiday to families far away. In the mix of all the people I spotted a family with four kids. All of the kids were under the age of ten and what caught my attention was a guide dog that was flying right along side of the family.

                One thing that has seemed to happen to me is I am able to spot autism now in other children, if it’s clear anyway and a year ago kids with autism weren’t even a part of my thinking process. I would have never noticed this difference in children if I hadn’t been forced to learn and be educated. Sometimes you see a child who potentially has autism and the way mom or dad are handling things confirms it. Sometimes you see a child who may be autistic and the parents don’t have a clue, which shows also. The stress of the parent is flowing and for good reason if they don’t understand why there child is different. I didn’t occur to me the guide dog was an autism guide dog until I watched for bit and I have to say once I figured it out I was blown away by how much help this dog had to be for the family.

                The dog was a medium sized black lab and still appeared to be somewhat of a puppy and on the end of his leash was a little girl around the age of five or six. The little girl was distracted by everything but the dog was not. Mom and dad were busy trying to stay as organized as possible and manage all of the kids at the same time. Most of the time mom had her back to her daughter working away and I was so very full of envy she was able to do this! Every time the little girl wanted to wander the dog would not move an inch, keeping his eyes on mom and dad. Mom would circle around the luggage rack and the dog would follow right along with the little girl. I wish I could have seen up close if the little girl was actually hanging onto the leash or if it was attached somehow but I assume it was attached to her.

                Bottom line for this awesome autism dog, this little girl had a four legged friend whose sole purpose was to keep her safe and close and nothing was going to break that dog’s mission. I left Phillip at home for this airport trip for the simple fact it would have been a nightmare. Just thinking about keeping him directed and calm in a sea of people gave me anxiety, so watching the dog erase that anxiety for the family was just amazing. I bet that amazing dog even guided her through security with no problem at all. Phillip would have broken the moment we had to stand in line and the day would have only grown worse from there which made me have to fight the urge to bother this family with a million questions about how the dog has helped them with daily life. It made me want to board the plane with the kids and possibly become the most annoying autism mommy this family ever experienced.

                I read articles about guide dogs for autism and people have told me how they help but to see it in action is pretty moving when you understand the challenges. Ipads are fun and easy to use but these dogs can increase the quality of life for an entire family in such an important way, more families need these dogs. From what I could see in a very short time and just watching from a distance guide dogs for autism is an extreme necessity or at least after watching this one in action….I am sure feeling like one would be an extreme necessity around here.

 

               Here is a link to more information on autism service dogs   http://voices.yahoo.com/autism-service-dogs-5550825.html?cat=5

               

 

Guns, Government, Mental Health, Video games! huh?

                I stayed up late last night watching CNN even though late last night I said I wasn’t going to do that anymore so I could clear my mind. In the madness of our country right now and America has been mad for a while now I think we can establish one thing….we are so divided, so ignorant, so misinformed, so stubborn, so blind, and so sick in general there may not be an answer or resolve to the mess we have created.

                I have watched autism, guns, mental health, video games, government, and even white supremacy blamed for the violence happening in our country. Some of which could play a role and some of which surely have not.

                If we all sat back and really thought about how our society has changed in the past twenty years I think we could actually outline how it all went wrong. We have become a desensitized and no one did it to us, we did it to ourselves. We have all seen it happening right in front of our faces and in our homes as time has passed. Your child can’t communicate with people face to face because texting is easier and most kids will actually tell you that these days. Video games are horribly violent and yes kids need to understand these are make believe forms of entertainment but we have seen kids get so attached to this entertainment reality becomes distant. Small kids plugged into violence because some parents find it easier to plug them in than to raise them. TV used to be free of extreme violence on our basic channels and over time the bar has been pushed. Each time creating a window to push the bar just a little more. Until sitting down with your kids to watch TV or a rented movie is like taking a risk against your morals and you know you’re going to lose. These things are totally normal to kids these days by the way.

                We have a right to bear arms but we don’t care who has them. Doesn’t matter if a person’s mind is healthy or not, money grants the right to own. Other then felons or domestic violence offenders who we all know still bear arms because there is no way to stop them. We can instill gun control but enforcing it would be nearly impossible at this point. Unless every household is emptied of military style assault weapons and then we have the guns that are on the streets illegally, which we already have not been able to stop. Already against the law and already out of control.

                Mental health is certainly at a crisis and we could say that began the moment the first anti-depressant pill, ADHD pill, Anxiety pill, and every other fix me now pill was prescribed. It’s as easy as saying your sad to the doctor and POOF….a smile in a bottle is placed in our hands, no matter what changes in our personal lives may need to be addressed. Pain killers are passed out like candy and America is eating them at an alarming rate. All of these things change the chemistry of our minds.

                The internet and yes I do know the irony of blogging and blasting the internet at the same time, there is no limit on what people can see or seek out. It’s an open door to every kind of scum on earth to find victims at their disposal. Child predators just have to log on and pick one and even though we try to teach safety we all know our kids are never 100% safe online. People type things to each other they probably would never say face to face because seeing someone in person hopefully inspires some kind of human connection and empathy but words on a screen mean nothing when it comes to someone’s personal value. We also see the violence some kids are being subjected to by their own parents and recorded with a cell phone. It was just last week I saw on the news a parent who drove their daughter to a bus stop to beat up another girl and recorded it, rooting her on during the assault. We see bullies attacking victims and then when the victim is forced to fight back we root them on, with no thought as to who is recording the event with no action as long as we get to see it. We see this all the time and we watch it because it’s become a sick form of entertainment for so many.

 We have become out of control because we have slowly allowed ourselves to lose control to the boiling point. Only now we are mad and want something done as long as we aren’t told what we can or can’t do. We want to point the finger at whatever we can to find reason for the madness and everyone is pointing in a different direction. Guns, Government, media, and the list of things to blame go on and on with everyone shouting a different issue at each other.

When all of this began the first thing I heard on the news was “autism lacks empathy for others” and that statement was mind blowing to me considering a good percentage of our young society couldn’t define the word empathy if asked to. We have lost it and still during a time we all know we are in trouble we still can’t seem to grasp compromise and empathy towards each other to fight for the morals, standards, and safety we all want in our daily lives.

In between meltdowns.

                 Phillip had a meltdown marathon yesterday and well, these days happen. Not as often as they could but when they do it is completely draining. It’s not the meltdowns that drain you and he is a three years old so tantrums are going to come no matter what. What is honestly draining about these days is the inability to help him or to know what has caused him to have such a hard day. This morning he seems ok so far and unfortunately we have to just move on from yesterday with no answer.

                Days like this also have an effect on the mom and dad unit. I am pretty real about the autism element in our lives and my grasp on the fact sometimes nothing can be done is a good grasp. Not an easy grasp as a mother but I have faced it enough to know I can really do nothing at times. Dad tends to keep the faith a little stronger then I do and believes  if he handles it like you would a typical child, you will get a typical reaction. Over time this really has caused some static and frustration between him and me. I tend to stand back and watch the struggle thinking one day dad is going to understand,  you can do nothing for him but leave him alone, but dad is a stubborn old bull.

                Yesterday in the heat of things and after dad had made several typical attempts to calm Phillip, I stepped in and took Phillip upstairs so he could be alone and calm himself. I came back downstairs and could see the frustration on dad and some hurt from not being able to help. I had to say something to him I hadn’t yet and also have been avoiding since the autism diagnosis but the longer this goes on the harder for everyone.

                I said to him, “I don’t want to come off as cruel but you need to realize our son is not typical. He is not going to react the way you are hoping he will and honestly he may never.”

                After I said it I realized even I needed to hear that. I know things have to be very different raising him and I know typical parenting won’t work but I also know many times I have hoped for a typical reaction. Maybe I am not as outwardly clear about it as dad is but guilty just as well. 

                When you think you already have some experience in parenting and then an autism diagnosis comes your way something happens. It almost feels like you are the new kid in school. You don’t know your way around, you feel like everyone is looking at you, and let’s just say a new country to because there is a huge language barrier. Everything you thought you knew is now irrelevant and adjusting is extremely hard, not impossible, but hard.

                With all that said dads stubborn will to hang onto typical could also be a very positive trait for Phillip as he gets older because even though he is not typical…he will wanted to be treated that way. In between meltdowns that is.

Connecticut Shooting - Tribute, Memorial, Vigil, Prayers - Sandy Hook El...

Grab your kleenex today. There is a women in this video about half way through who is buckled over with a nun standing near her. This picture ignited a thought......America needs to stop acting like entitled brats and come together. Compromise and evolve because society is evolving and we aren't keeping up. I can only imagine the woman in the pic was just told her child is dead. If that doesn't make you think and feel....nothing will.

You will be judged the second you walk into a room.

                  I saw something this morning that made me think a little too hard with my first cup of coffee but couldn’t be further from the truth. It read...”they say to be yourself, and then they judge you.” How many times do we tell our children to be themselves? If you’re like me you say this to your kids constantly and you mean it but the reality of society is judgment comes no matter what.  We even remind ourselves all the time not to judge and then we do it, even if we don’t want to admit it.

                We judge each other by appearance, financial class, parenting, religion, race, political views, and neurological differences. There is more but those are the main categories that come to mind right now. When I was a kid I was constantly questioning everything about the world and the people in it. I fought desperately to not be a social drone, mostly because I was socially awkward and embracing it was easier than fighting it. I found if I looked as out of place as I felt no one questioned it, except for my parents of course and they had many more reasons for concern than my desire to embrace different. I remember a day my mom was very frustrated with my clothing selection and really this was everyday but she didn’t always say anything to me about it.

                On this day she said to me, “Jenn, no matter what you decide to do with yourself in life or how you choose to look, people will judge you the second you walk in the room.”

                I was a teenager so of course I didn’t listen, I never did, but her statement actually never left my mind. As a kid you don’t want to believe this so you hang on to the notion people are truly looking past all of those outside elements searching for your personality. Over time my mom’s words began to ring true over and over again. Not as a kid by the way but traveling into the adult years of life. I actually don’t remember being judged as a kid other than by adults.

                As an adult I realized a quiet personality sometimes meant that people thought I was dumb and still do. Being overweight means you are unhealthy and being skinny means you are healthy, not true by the way. I am skinny and I know plenty of people of struggle with weight who could run circles around me and I have no doubt will live longer. Going to church on Sunday makes you a bible thumper and going to a bar on Friday night makes you a drunk.  If you live in suburbia you must have a nice family and if you live in a trailer park, you must be trashy. There are so many more I could point out because the judgment list goes on and on and when I sit back and think of all these things it actually never ends.

                When we tell our children to be themselves we mean it and we want them to be comfortable with who they are no matter what but at the same time my mom’s words over 20 years ago are dead on as I got older. It’s interesting with my son being different from other kids because when we go places I do see the looks on people’s faces in regard to his difference but I can’t think of one time another child gave him a look or a child judged me as his parent. In fact kids will just flat out ask why or carry on with what they are doing. Most of the time they don’t even notice Phillip is different and still engage with him as they would any other child.

                Kids really are looking for each other’s personality even through all the differences they have. We aren’t born judging each other but we sure do teach it, perfect it, deny it, and practice it often as adults. How difficult it must be for kids to take the advice of so many adults who really should be taking the silent advice we can see in them if we pay attention. On that note, try living just one day with absolutely no judgment towards anyone. You might find it’s much harder than you think and if you are successful you are an extreme asset to the human race and I wish we could all embrace that ability, or should I say hang onto it.

 

Let it be known...autistics do NOT lack empathy.

     I took a break today from the news as my stomach was in knots and tears were just to hard to fend off thinking about the families in Connecticut. Although I turned my thoughts away from it, or tried, it was still on the front of my mind like all parents today in America. When I sat down tonight to check Facebook I found I had missed the part of the news I needed to see and we all know why.

     The man who carried out this massacre is now rumored to have autism among other things he struggled with. When I see this come up it just takes that knife and twists it right in. What always follows is ignorant, yet educated, expert telling all of America autism lacks empathy. People start coming forward with statements about how "weird" the person was. That is when every person with autism or who is fighting to raise awareness slumps back and knows they are now starting all over to stop this way of viewing those effected. I just came across it and I slumped back and realized we don't have to keep sitting back and watching this happen all over again and say nothing. I say again because the same rumor flew shortly after the theater tragedy. Even if these are not just rumors it in no way means autism played any part in what was done.

      Kids and adults with autism do not lack empathy and I can't express that enough. What they do is fight to make sense of things, including emotions of others. I don't mean they don't understand emotion, I mean they view expressions differently. They may react differently but lack empathy? No way.

      My son is three and autistic and I want to give an example of his regard for feelings of others to clear the confusion media creates. I was sick for three days with the stomach flu. On the couch and out of commission. Not only sick but my head hurt so bad I wanted to cry. Day two I woke up in the morning and my three year old non verbal son was standing beside the bed.

      I wanted to stop that paragraph so your mind could go were media has led it. Think about what you might imagine he was doing at this point. From what you know of autism did your mind go in a negative direction? For many of you it probably didn't but someone who doesn't know autism it did. My son was holding my hand, brushing the hair out of my eyes, and when I opened my eyes he smiled. When I said good morning to him, he laughed and danced with joy. I will add he held my hand very carefully and gently moved my hair from my eyes because he knew I hadn't been feeling my best.

      To clear the media driven, misleading,distorted,incorrect information that pollutes the air....this example I have given you, is the kind of empathy autism has and we rarely hear about on the news.

Extreme prayers for Connecticut.

http://rt.com/usa/news/shooting-reported-connecticut-school-085/

                 I woke up to the sun shining through the windows and all hell breaking loose across the country.  Just a few days ago a shooting happened in an Oregon mall and innocent people were killed as well. I can’t imagine the terror and impact these things have on victims, if they are one who is able to walk away. We call this a shooting but what it really is an act of terrorism to our own by our own. Not created by a group of religious crazy people our government can track but random Americans we never see coming. To me that is so much more frightening to imagine. Not making light of global terrorism by any means but right here in our own homeland do we feel safe? Most people would say yes, but many people who are affected forever would say a very strong no.

                Most people feel safe getting on a plane these days but how many of us know and understand a random act of violence just leaving the house can be reality. How are these people stopped? Gun control is not the answer because gun control only works for law abiding citizens who aren’t planning to kill. We can instill gun control to the end of time but people who are killing with guns will not obey the laws. Do we arm someone in schools who is trained, trusted, and ready to stop this madness? One would say no way; my child can’t go to a school with an armed faculty member. Then again, if you woke up to this madness and it was your child’s school maybe you would have wanted someone there to stop this person by any means possible because it meant your child’s life.

                Then there is the mental health side of these shootings. What in the hell is happening to the minds of these people that create this desire in the first place? It’s hard to even write about this issue being a parent and maybe you dropped off your child this morning at school with a smile and a “have a great day” so you can actually feel a fraction of the pain these parents are feeling. Only a fraction because the real impact is something we can’t grasp unless it happens to us.

                Going to end this blog today by sending extreme prayer to the families, children, entire community that has been faced with the ultimate evil this morning. My heart aches for every person affected and that affect will last forever. Maybe this has happened far away from many of us but if you are human, this has to hit close to home.

 

The fun parent pulled it off and glad to be fun again.

     For the last three days I have been down for the count with the same stomach virus Phillip caught last week. Daddy had to really step up his game to help out and thank God for it! I literally could not stay awake for more than an hour at a time and when I was awake if felt like a vice was squeezing my head. I was totally worthless in every way. This doesn't happen often but when it does, it is a drastic change.

     Part of Phillips routine is mom so when mom is out of commission he has to find a way to rely on dad and his brain gets a bit frustrated. Dad does pretty good by the way but wants to appease him just a bit to much. Sometimes you just can't appease the little man and you have to get up and walk away. Phillip is used to dad being the fun parent and not the enforcer. You could easily say dad is used to this routine as well and likes it that way. Who wouldn't?

     Day two I made a joke to dad and said to him, "how do you know I am not just faking it to lay on the couch and do nothing?". Dad actually did give me a second glance on that one. I have to admit even though I felt like road kill I secretly enjoyed listening to the role reversal. For one it's a reality check for dad that being the fun parent really is much easier to do and for two the begging me to feel better is a sure sign I have made being the enforcer look easy. Feels like a sadistic pat on the back from life (cue evil villain laugh).

     Day three I finally went up to take a bath and wash off what my family was so kind not to mention and it seemed as though dad and Phillip had become totally in sync. My sadistic pat on the back from life had become irrelevant. That is until dad had to go to the grocery store and I asked if he as taking Phillip with him. The look on his face completely priceless at the thought of taking him with him because we all know what happens to Phillip upon entry of a grocery store and mom had just gone to far on that one.

    Today I am back to full health and the order of fun parent and enforcer has been restored. Daddy pulled it off with only a few bumps in the road and now gets to go back to being what he is best at, being fun. Mommy gets to get back to being the enforcer and unfortunately I didn't get my chance to be fun because I was to dang sick to take on that role. I did get enough sleep to last at least a week and even though I felt like I was on my death bed, knowing daddy can pull it off is a good feeling. On that note my heart goes out to those super strong mommies and daddies who are doing it all alone. How they do it can only be explained by some kind of super power that kicks in when needed. Dad goes back to Alaska in just a couple weeks for his three month stay and boy am I lucky I have only been this sick when he has been in the lower 48 to help out. Not so sure daddy would agree with me on this being lucky but I do know he is probably praying my health stays in tact for at least two more weeks.

Never have we had a verbal conversation.

                 Stimming is a common topic when it comes to autism and one of many clues for parents when autism is in question. There are different forms of stimming but most common is hand flapping, spinning, which we thought was Phillip just being silly, and repetitive verbal sounds.

                Phillip doesn’t flap his hands or spin anymore, but he did both of these things daily for some time. Once we were able to get a handle on some bowel problems many of the stimming habits just stopped but the verbal repeats are still there. Sometimes he will take a quick breath and make a click sound. It’s quiet and most of the time it goes unnoticed, to us anyway, but this would be considered a stimming habit to a therapist.

                For the last three to four months Phillip has been making a very odd sound. I would compare this to a sick lion roaring and roaring loud. He will run around doing this over and over and I will be the first to say it’s obnoxious and loud. I have even asked him to stop at times even though I know you can’t just simply ask a child to stop a stimming habit. When I need the world to be quiet around me it seems that little bare sickly sounding lion will let out his roar, and then we repeat it over and over full speed through the house. This is when my eyes look up and I say in my mind, Lord…help me!

                If was to take Phillip to a therapist and ask why this madness is happening I assure you the answer would be, he is stimming. He is self stimulating or this is his way of coping with his sensory issues and I would take that answer and go with it, question it, but go with it. I question everything when it comes to these things because we know no two kids are alike, we know the entire spectrum is a mystery, and we know no one knows for sure.

                Here is when I tell you why the questioning everything is not only ok to do but important. Yesterday I was in the kitchen preparing to mix up my daily smoothie and Phillip was behind me in the dining room playing. I put all of my ingredients in the blender and hit the button, when I stopped the blender there was strong echo behind me. That little sickly roaring lion had just become a blender and I simply shook my head. How on earth did it take me months to realize my son was mimicking my blender, which I used each and every day?  He hasn’t been stimming at all, just creating the same sound he hears every day and mom was just extremely slow picking up on this. A day later I am still shaking my head at just how long it took my simple mind to put this together.

                Now I am going to take you back to that quick breath and click sound he makes from time to time. This friends comes from a Discovery movie he watched for a few days about dolphins. He mastered the sounds of a dolphin and continues to do it. In all of this he can’t communicate like you and I do and that is one of the most baffling things about my son’s autism by far. Sometimes he is a dolphin and sometimes he is a brave little blender but never have we had a verbal conversation.

If your a good parent and you know it...clap your hands!

          Long and exhausting day. I am going to attempt to write this from my iPad and see if I can adjust to this touch screen typing business. Weird change but slowly getting the hang of it. I did set the old laptop on my lap today that I can't unplug from a bad battery in an attempt to blog, but the chance quickly left.

          Phillip was sick all day today and mama started to feel the same way. It didn't hit nearly as hard as it did him, thank goodness, and I know today his little body just feels broken from all of the stomach upset. I discovered something through all of this and I needed to see it clearly to give my family a break from my own frustration level.

          We had a violently ill three year old on our hands that can not communicate how he feels with words. There was no, "my tummy hurts" or "my head hurts", although I think everything was hurting him by 2am. I quickly realized everyone was worried about him but tried very hard to stay out of the way. Yes, this could have a lot to do with the projectile vomit (small giggle) but even when that faze left us everyone stayed away. I saw a family who had no idea how to help him without knowing how he felt, what he wanted, what to do other throw in a towel, literally. With all that I also saw a family who was confident mom would take care of things. A security in me being covered in vomit and still having my arms wrapped around one of the reasons I was put on this planet. The other two reasons went in there rooms and closed the door. A wise choice by the way.

           Am I bragging my mom skills up a bit? Yes I am and as parents that is totally OK to do and necessary sometimes to get us through these days that can run us ragged. We are judged so often in every direction and these days you don't have to have an autistic child to be judged that's for sure. Everywhere we turn we are told how to do this parenting gig and I don't think enough parents are just told...you are one awesome mom or dad, even when you have no clue what you are doing! So tonight I want to say to all of you parents who are struggling through the day or maybe today was a breeze, you are awesome. No matter what judgement comes your way you might just be the security for your family that works perfectly no matter how you are doing it.

           If you are striving for the best, consider you might already be there so sit back take a deep breath and give yourself the credit you deserve. Just in case no one else has lately and speaking from experience, it helps to feast on some fresh baked snicker doodles while you are giving yourself a pat on the back..instant fresh baked because I am a mom, not Martha Stewart.

It's been a day!

                 It has been day! One of those days you want fire up the non family car that just sits in the garage and drive off for a while. Today I had to take my big kids to the DMV for ID’s to fly to their dads for the holiday. Not something I was looking forward to as I know all too well the DMV line in a big city is a very long process but a must. By noon I had already lost a bit of patience when I opened the fridge to an empty orange juice jug and someone opened a box of yogurt and left the cardboard next to the box. The garbage is simply two feet from the fridge so both of these things irritated me. Then my phone rang and when I picked it up and put it to my ear I realized my phone had been dropped in butter and at this point my ear was slimed. Again, the paper towels within reach.

                When the kids walked in the door arguing came with them along with name calling. Then Nick and my daughter began to hoarse play and sometimes between the two of them the noise can get to be a bit much. Even Phillip at this point was yelling shut up, another thing I am not too happy about. The noise bothers him and no matter how many times I say it, it never seems to sink in. I also did not teach him this shut up tactic so when my child who barely talks yells this, it bothers me.

                Nick decided he wanted to get out of the house so that meant we were going to the DMV as a family…yeah. I knew this was not the best idea but what could I do, tell him to stay home? At the DMV Phillip went into meltdown right away, I saw that coming so Nick took him out of the building. We waited and waited and waited only to be told an hour later we needed to come back with certified birth certificates because the stack of proof of identity was not sufficient. Saw that one coming to.

                Get in the van and see Phillip has a tootsie pop and I don’t make too big of a stink even though I know sugar in that form is very bad for the rest of the day. Dad had taken him into a sports store and they gave him a free sucker. I typically refuse this but dad doesn’t always understand why I do this. Again the teenagers begin to fight about who doesn’t want to sit in the back of the van. At this point I could have strapped them to the roof but they have both outgrown me so not an option. On the drive home the projectile vomit begins just a block from home, so I keep driving knowing the smell is about to hit like a title wave. The only thing I can hear is Phillip vomiting and my oldest son saying to my daughter...”bet ya don’t want this seat now!” while he is slowly making his way to the front door with the house keys. When a child is projectile vomiting, slow should not be an issue, ever.

                We are home and Phillip quickly taken to the bath while dad takes apart the car seat to be washed. This is when I realize none of clean towels are upstairs because no one has bothered to take their dirty clothes down to the wash. Once again, I do it and you can probably tell the, I do it part is weighing on me. We are now sitting on the couch that Phillip did manage to vomit on earlier and he is slowly closing his eyes. My fear is dehydration because he is thin this happens quickly and he does not understand we need to prevent this. Last time this happened we spent the night in the hospital with an IV in his arm.

                Although I love being a mom and taking care of my family, I do have days I wouldn’t mind driving off even for a bit in a fast car with the music up and no one to take care of. Moms can easily loose themselves in the job and from time to time you want to wash off the vomit and spend some time on just yourself. No phone ringing asking where you are or how long you will be. No house to clean and people to serve. No laundry to do, dinner to make and no complaints from the people you spend your days making comfortable in this life. Then again…where would I go and what would I do? It wouldn’t take me but the end of the block to call home and make sure everyone is still ok.

The divison of autism parents....and the impact.

                The division between parents when it comes to autism always seems to push itself to surface from time to time. The division I am talking about is the different opinions that stem from different experiences with having autism tossed into life. When Phillip was diagnosed I guess I was silly thinking all of us autism parents would be united and stand for the cause together like a big band of brave acceptance warriors. It is a bit like that in some ways but in many ways it’s not.

                Autism is such a different experience for everyone that it can even be difficult to find just a few other people who share your opinions or close to them. I have ran into nearly every kind of autism parent there is, I think and I am almost reluctant to say that because we have a long way to go on this journey.  What do I mean by every kind of autism parent there is? You will find the parents who see autism is a gift, as a curse, as a disorder, as a neurological difference, as a vaccine induced disease, as an evolutionary impact, and sometimes you find the parent who just doesn’t know and deals with whatever comes their way.  My favorite people aren’t parents at all, but people who will actually flat out tell you how your child became autistic. Those people don’t really have a place in this blog but mentioning them makes me laugh so I had to throw it in.

                I have tried to stay away from this topic but every time I see these parents collide I feel a bit of pain for autism, no matter how it became a factor in life. We all want our children to be understood but even then I can say we don’t always understand our own children so we fight to get society to on board and fight to explain why at the same time. The emotions of autism are draining at times but well worth it. There have been times I have wanted to change the title of my blog to The Evolution of an Autism Mommy just because my opinions and feelings change so often. It is a roller coaster to say the least.

                With that being said I know society and the people we interact with, by nature are not drawn towards learning about something so confusing. I would even think many people are just afraid of it in general from the things they read or even from a screaming child they might have encountered in line at the grocery store. If that screaming child possibly hitting mom or dad is the only autism encounter they have had, I wouldn’t expect them to jump into wanting to know more. Now it you take that screaming child who can also memorize an entire Pixar movie in one sitting, and make that child a nephew, grandson, little sister, or best friends youngest then you have someone who is willing to want to learn more. A direct impact will do that to a person so in all the autism division I worry. I worry that parents unknowingly push people away from the desire to know more.

                Autistic kids generally don’t see how their autism impacts others unless we show them. They also don’t see how it will impact their own life unless we show them. In all the division and different opinions I want to shout…”Stop the madness!” I want to shout it as a parent who needs other parents and I want to shout it for all of the nonverbal people living with autism. They want success and as much independence as possible in life or maybe they just want to get through the day with a smile from a stranger because they don’t see one often enough. Either way the quickest way to help both of those things happen, or hope for that to happen is to stop the madness and focus on what truly matters to each and every autism parent you will ever come in contact with….the impact. The impact of autism, the impact of a parent, the impact of our children, and the one we all really need to move to the top shelf….the impact ON our children.

Should be fired on the spot, just for talking.

http://www.komonews.com/news/local/Parents-angry-over-school-districts-isolation-booth-181308621.html?tab=video&c=y

                 I posted the story above on my face book page yesterday but last night when I was up late watching the news this segment came on. I have to say as a parent of an autistic child after the segment aired it wasn’t the padded room that had me fuming anymore. Ok, well a little but the things I heard coming out of the women’s mouth in the interview were so much worse to me.

                Couple of things grabbed me and for a moment I wanted to throw my TV outside and give up on society completely. They mention in the segment this room is intended for children with an IEP. The IEP is instilled when a child has special needs, in my mind this means not main stream education and that’s that. Individual Education Plan and I have to wonder what kind of padded room has anything to do with a room only a prison would use for inmates. What does a padded room have to do with education? Nothing, unless the educators have no idea what to do. If that is the case my son, who is not main stream, would never have his name on this IEP. I would hope all parents are carefully reading and considering this. If you don’t have a padded room at home, you don’t need one at school.

                Then we have this little dandy from the district spokeswoman who should be fired on the spot just for talking. “District spokesperson Sandy Catt defended the practice, but admitted the district launched an investigation after receiving allegations from another parent Wednesday.

"It is not for discipline for regular education students," Catt said.”

“Regular” education students…..that is what a person in authority and control over IEP’s has said publicly to defend a padded room. At this point I was mortified and completely in shock. The comments, the defense of the tactic and after all was said and done I had the feeling no one minded this tactic as long as it wasn’t used on “regular” kids. If little Johnny who is a mainstream child is put in this room then this child was treated like an animal. If little Jimmy who has autism is put in this room, it is part of his Individual Education Plan. Anyone else see the major problem with this?

Special needs does not mean broken, animal like, a problem, or a nuisance. Special needs means and I think we all know this, a different approach and when you look at the way our education system is heading I think it’s safe to say most American children fall into this category.

I am going to end this blog by simply saying Sandy Catt, you clearly are in need of your own Individual Education Plan and you do not understand the meaning of special needs. Maybe you need to lock yourself in your therapeutic padded room for a few hours and see if this helps. May God have mercy on anyone’s soul who closed the door on that room to any child, regular or not.

A very merry autistic Christmas! hopefully

                 Christmas is upon us! Christmas with Phillip has been a very different experience in every way. Typically kids are jumping for joy and can’t wait to open presents, but that is not the case with the little man. We put up the tree last night, the lights and ornaments were amazing to him. Yes, he has witnessed this living room light show before but he has also taken a new interest in The Polar Express so he associated it this year with something he loves. I also made the very wise decision last year of buying plastic bulb ornaments after Christmas for very cheap. Glass no more and for good reason, his little hands must touch and sometimes throw or drop. Glass ornaments have been a Christmas hazard in our home.

                The process of opening presents has never been clearly understood for Phillip. He has finally started to pick up on the fact a new object is inside and I say object because gift is not really what his mind is thinking. We always try to get his attention and root him on to open a present but it ends up being me opening it and until he actually sees what is in it, no interest. The struggle after that is all that dang packaging companies put on toys and between his desire to investigate and the almost impossible packaging removal, we can border on an overload by the time he has it in his hands, or he has moved on and has no interest at all.

                This year I have really put my mind in autism mode to try and make things a bit easier. Easier and autism don’t really go hand in hand but I think sometimes we can actually ease a bit of the chaos by taking just a few things into consideration.

                First, I have really considered the chaos of toys. If you take a good look toys are extremely bright and seems toy companies are on a mission to outdo each other with big, loud, and busy. I want to just get away from some of these toys so I know Phillip has to feel like these toys are hitting his mind like an atomic bomb. Number one change this year was choice of toys. The color needed to be less bold; the sound needed to be quiet or clear and just because the company claims it will educate your child doesn’t mean that is actually what it will do. This website has some awesome sensory friendly toys and the colors are toned way down from your typical toys, http://justb-byou.com/toys/

                Target carries this line of toys and I bought the Symphony B for Phillip this year. It’s busy but not in a too much way, and the sound is extremely clear. Not to mention I have no problem tolerating the sounds of the Symphony while I go about my day.

                Second adjustment for the holiday was less is more. A child who becomes overwhelmed easily should not have a mountain of bold, loud, new things standing in from of them. This will not go well so take it easy on how much. I know Phillip isn’t paying an attention to the amount of things he is getting, and that is an awesome quality. Take advantage of it if you can but not a point of cruelty either because it is Christmas.

                Second thing I considered to ease the holiday is before I wrap his presents I am going to remove the packaging. Anything that prolongs the process of getting his little hands on it is going bye bye. The packaging to a child without autism is a symbol of something new, but to Phillip it is simply a barrier and possible a brick wall that his interest will bounce right off of. I haven’t bought so much that anything will be returned so no worries there.

                Last but not least is taking an intense interest and running with it. Airplanes happens to be Phillips greatest interest so if has an airplane I know he will at least take a look at it because he just can’t resist.

                Basically my advice for the holiday is taking it easy. Over the top is too much, remove barriers if possible, and run with an interest. If you follow those basic guidelines there should be some success of avoiding a bit of the chaos. Most of all just breathe and remember the years pass way too quickly. One day you will be sitting at home waiting for your children to come home for Christmas and all you are going to remember is how little they used to be.

               

Last thing on his mind and first thing on mine.

                It has been a very long couple of days and thank God for cheesecake or I may have felt totally alone by now. Phillip was not drinking his spirulina laced juice for a few days; in fact he wasn’t drinking or eating much at all. So, the after effects of a system change and I assume major life change have begun to kick in. One the move faster than usual, his ears appear to have completely stopped working, habits are coming in full force such as asking for a bath every hour, and total intolerance for any public place have all taken over.  

                It doesn’t help my own stress level has elevated due to certain life issues I need to make a firm decision on but difficult decisions so it sits in my mind and takes up space I need to store more patience in.

                Since moving I have gotten a real taste of how much autism awareness is really out there in the greater population. Let me tell ya, we have a very long way to go before people are aware. Not just aware of what autism is but aware of how to have some kind of social manners towards others who are packing some autism induced behaviors around with them in life.

                Today was a difficult day and unfortunately isn’t nearly close to over yet, but it began with an argument with my daughter about getting her room cleaned. After the incident I realized I was a jerk and even though she knew this and so did I, I was still a jerk. Then I had to go to Target to get a few things and my oldest son decided to come with along with Phillip. I can’t leave him home all the time and every time I take him somewhere I like to think, this is going to be a good outing. More often than not, I am wrong and today that was one of those days. The reason is routine and the one time he has been in Target he wasn’t given time to take it in which led to a meltdown. Routine creates the mindset for him that this is how it will go next time as well. He was given time and plenty of time but still we had to repeat the last visit. He may move away from this with time, but for now Target is his target meltdown zone.

                Here is where the lack of awareness comes in. There was not one person who did not slow down to watch, to observe his behavior, and the looks on the faces where full of disgust. Not so much directed at Phillip but me. I could actually see on their faces the wonder what I was going to do about my out of control child. If autism awareness was strong in society these looks by so many would not be tossed at me so quickly. Now I know if another autism parent were to have walked by I may have gotten a smile or a hang in there, but there was no kindness in sight. I could also clearly see the frustration on my oldest sons face and it wasn’t because of his little brother. I assume it’s from being stared at by strangers in an unpleasant way. Understandable at fourteen years old, especially when he tries to help and just wants his little brother to stop. He would have preferred for me to leave Phillip home but I can’t just keep him out of public places and then assume when we have to go he will be ok either. Leaves you in the hard place of knowing leaving him home isn’t good and yet taking him with us also might not be good.

                In all of the awareness parents are trying raise is it actually getting to the right people? By that I mean to people who really aren’t aware. Or are we spending hours and hours just babbling to each other things we already know. Does it have to take someone actually having an autistic child to learn? No, but what can we do other than what we are already doing to reach people is what comes into my mind. What can I possibly do to raise awareness to a point most of the people walking by might consider autism is literally hitting me in the head out the door. Face book, blogging, and trying to explain the difference is great but it’s not enough.

                I am not going to put a bumper sticker on my car or put a t-shirt on my child that shouts autism, because if I do that no one sees Phillip. They bypass who he is to look for the autism and that is not how I want him to live his life. I want people to bypass autism and look for Phillip because they know and understand enough to do that. Although that is sort of a silly statement after what we just went through at Target because even Phillip couldn’t bypass the autism to look for himself. He is also just three and doesn’t know he has autism. It’s the last thing on his mind when he is throwing himself around on the floor, and the first thing on mine.

Thankful for the way things just come together, when I let it.

                Road trip for the holiday today and the first thought I had this morning was, how will the day progress. I had two thoughts in my head and was just going to keep my mind open and see what happens. We were heading to my brothers house full of people. Phillip had never been to my brothers and a house full of faces can of course become a problem. So he would either adjust fine or right off the bat he would have a meltdown.

                So the journey began and we packed into the minivan on our way to the ferry terminal. Once we arrived at the ferry terminal we discovered a two hour wait to get on the boat. If we waited, on the side of the road we would not make it in time to the feeding frenzy we were all thinking about. This brought the decision to drive, also two hours but without the hour boat ride. All the while I am thinking about if or when Phillip will protest. So far he was perfect and seemed to be happy to be on an adventure. I have noticed since moving when we drive there are so many new things to see each time, he is perfectly content.

                Off we went down the freeway with the hope the traffic would not be so bad our time was wasted no matter what decision we made. Since moving back home I have had a new perspective on life in general and all the things I have missed. The busy life I was always running from is exciting and I am in love with it. From driving through Seattle to a passing DeLorean on the freeway, I just enjoy it like a little kid would. Phillip was in awe as we drove by the airport and did not take his eyes off all this planes on the ground and in the sky.

                At my brothers house he ran right inside and barged his way through the faces onto the couch. Then he was off to explore and take it all in. You could say he did this nearly the entire time we were there and was fantastic. Then the time comes he has in fact taken in all he possibly can and he realizes it. He doesn’t just realize all he has seen and investigated but it pours over him and the overwhelming feeling hits. I would compare this to slowly filling a cup with water. If you just keep pouring the water in, it will spill over the top.

                 This used to take just a short time and thankfully these days it can take a long time but either way, it hits. His first sign of overload is he wants his clothes off and at home this is fine but most of our overloads don’t happen at home. Then it elevates to not wanting to be touched and some people would mistake this for being unfeeling or unloving. For Phillip this really is him saying to me…I am overloaded with feeling and I can’t handle one more, including touch. When the don’t touch me faze begins I know this is it and very soon no one will be able to help him. Once this faze is in effect I know it is time to go. Next time he goes to my brothers it won't all be new so the risk of that pouring over won't be so strong. He will in fact remember all he took in today.

                The evening ended and as we drove past the city lights I was content, full of food, but content. He did better than I could have expected in every way and I was feeling a bit overwhelmed at that point how quickly life changed in the past weeks. Being able to spend the day with some of my family in the place I have always called home was not something I would have predicted in life just a few short years ago. Driving down the road with the people I love, able to touch Phillip again by the way, cruising by Seattle lights on Thanksgiving and home is just s short drive away is exactly how life Is supposed be. At exactly the right time and I know that because life has taught me just exactly that.

                On a day we are supposed to say what we are thankful for I can easily say I am thankful for the twists and turns, the tears, laughs, the surprises, and all those pesky things I have needed to learn even if I had to learn to the hard way. I am thankful I can say goodnight and I love you to my kids every night and know one day Phillip will say it back. On a typical morning the one thing I am thankful for as soon as my eyes open, is that I was given another day to open them. If that is how your day begins, well I would say your day started out pretty dang good. Now all you have to do is live like you really feel just opening your eyes for another day is actually a gift and let it all come together, no matter how that may happen.

Conform just a bit and let the rest blow our minds.

                 We turned in the paperwork for Phillip to begin sessions at the autism center yesterday. This round of paperwork was only 6 or 7 pages long thank goodness. If there is one thing I have a bitter grudge against since this journey began it’s the paperwork. Necessary to fill out in as much detail as possible so they have an understanding of your child but each and every time I start to get that feeling. That feeling like children are droids and my son was wired wrong so I have to take him in to get rewired.

                The other part of the paperwork I hate and I think many autism parents may feel this way, is when I have to answer a question sometimes I feel the answer is no matter to the process. Meaning today I may have one answer, three days ago it was not the same, and three days from now it may also not be the same. So, you do the best you can and hope the person reading your answers knows they are never solid.

                It’s also difficult to answer some of the questions when two parents have two very different roles at home. In our home I am the manager and dad is the fun. The manager almost always deals with the sticky situations and the fun, well the fun gets tickle time and giggles. Both important roles but your answers can’t possibly match when it comes down to it. To be honest I am a slightly bitter about being the manager sometimes. It becomes routine to keep things moving as smooth as possible and sometimes you find yourself the droid who needs a rewire.

                I can’t stand the entire process of training people to act accordingly and that really is a huge part of autism. It’s hard to keep my sons attention, stay on task, follow directions, and understand simple social cues such being quiet when we need to be. All of these things have to be instilled before he can begin school so I have to embrace the process no matter how I feel about it and I have to understand he will not thrive without knowing how to do these things to the best of his ability.

                I think many times society believes therapy for autism is to fix an autistic child and to treat it out of them. That is really not the case and if it is, you might need a new therapist. The process is to help them have a fighting chance in the world as we know it. If my child needs to be taught to act accordingly to get an education, and it hurts to even type that, then that is what we need to do.

                I am tossing out the word therapist in my mind altogether because therapist and fix go hand in hand. Therapist also has a bit of a dark cloud looming over it.  I am going to view all of these lovely ladies who will be seeing my son as life aids. Aiding him to a bit of conformity we all have to have to function on a daily basis.  Aiding him to the place he needs to be to excel with the beautiful mind he was given.

                At this point you may be laughing at my denial of the word therapy and I am giggling at myself about the whole thing to but if it keeps that dark cloud away I am totally fine with my denial. Will go into this with the acceptance of some conformity and let the things that don’t need to conform or even should never conform, blow our minds as he travels through life.