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.

Video: School bus worker chokes autistic boy - Schools - MiamiHerald.com

Video: School bus worker chokes autistic boy - Schools - MiamiHerald.com

       I don't even need to ramble on about this one, we all know how we feel about it. The disabled child is in the restraint, but it's pretty clear who needs to be restrained in this video. Every parents nightmare and a very real one that parents with a special needs child never stops thinking about. Not just the treatment of the child and I assure you, the urinating himself was a form of communication, but the fact human beings are disgusting enough to not even consider a camera directed at them in action. NO feeling of empathy, remorse, or understanding of right and wrong.
      The autistic child is NOT the disabled one in this video, not even close. Lets not forget there are some amazing people out there working with a passion to be a positive part of our children's lives and those people must never be ignored or forgotten just because the video of there character hasn't gone viral.

A busy mind...and getting tons of exercise!

               Great visit with Phillips Uncle and cousin this weekend and was nice to see the boys play together, also to get some muscle help to move some furniture in from uncle Tank.  Today we inherited a beautiful piano that matches our dining room set and hopefully when Phillip nails down his ability to pay attention he can take some piano lessons.

                I also did the unthinkable today! I went to Ross without Phillip and it was just me and my daughter who goes off shopping on her own. I had forgotten what it felt like to go into a store, look for things for myself, and not be in hurry. Not to mention not have my family running by trying to keep up with Phillip. Yes I have been given time to do this in the past but we all know if your little ones are in the building your mind is never really on finding much for yourself.  Then I did another unthinkable! I actually bought some things for myself that I took time to pick out. Things I really like and not just things I grabbed on the fly by. It was fantastic to spend a little time with my daughter even if it was short without either one of us having to manage Phillip at the same time. Then again, I missed it a bit and found myself in a hurry when I didn’t need to be. I was even talking to myself out loud because I am constantly talking to him so he will stay with my voice. It’s just the nature of the beast now and boy did I get some funny looks. For once I was getting funny looks for my behavior and not my son’s behavior, and the irony cracks me up.

                Now we are settling down for the evening. My dad is sitting in the dining room helping my oldest son with his math homework and thank God he made a trip over this evening as soon as I called for help. That alone is just an amazing feeling all around. I don’t have to give my son a pep talk and tell him to do his best because help was on the way. Having a math and biology teacher a phone call away is going to be a God sent, literally, to get the kids caught up in a good education system. I knew they were going to struggle a bit so having that support is going to be key for them to have an education they deserve.

                Phillip is running around in his diaper as usual and my daughter finished up making some brownies I intend to dive into later tonight. Dad is kicking back after a nice weekend with his brother who is typically too far away to see for a quick weekend and I am preparing to do some investigating into some old stamps from a book of modern postage stamps printed in 1940. Full of awesome stamps I am excited to find some history on. After the little man falls asleep of course and I stuff my face with some hugs in the form of chocolate.

The days are so busy with constant things to see and do I feel like boredom isn’t even an option anymore. Very different from life two weeks ago when boredom was how the day began and ended. I can’t help but wonder if this change that has made me feel like my brain has things to do is the same way Phillip feels. He has adjusted better than I could have ever imagined he would and maybe busy was exactly what he needed. Routine is good and essential for him but routine also needs ways to keep a mind moving. Exercised might be a better word to use and his busy mind is not just getting the ease of routine but the exercise of never sitting idle for way to long.

A busy mind must keep moving and this boy’s busy mind is doing a whole lot of moving these days, along with a bigger house to keep this little legs moving right along with it.