Blogger for Android

I just added an app on my EVO for blogger! Because I do not habe internet at home this is great! I will be updating frequently now and i'm sure there will be a lot of spelling errors so bear with me.

Published with Blogger-droid v1.4.9

Soldiers

Because no one follows this blog except me, I guess I write all of this stuff for me.  There is always that slim chance that someone comes across this blog and it makes sense to them in some way.  When people see the logo I designed, I get a lot of reactions.  Most of them are the raised-eyebrows and oh-that's-nice-but-I-have-no-freaking-clue-what-you-are-talking-about look, but there are people out there that get it right away.  Those who understand are parents, teachers, therapists, or grandparents and sometimes one of the above with experience in the military-all who have, know, and/or love someone with ASD and/or SPD.  That rare breed understands right away--they look at the logo and nod their head---'nuff said. 

The concept for Sensory Assault Operations is rooted in the fact that I always said that my son was not merely sensory seeking---he was on a "sensory mission."  I said that right from the SPD diagnosis get-go.  The concept stewed and grew over several years until a perfect alignment of somethings sparked Sensory Assault Operations and the Sensory Assault Pack.  Gear for kids on a sensory mission.  Right on!  I wouldn't be creating and developing most of the products in my line myself, but I would be putting together tools that have either helped me or other people I know in their daily mission of coping with SPD.  They would all be affordable and in one place so that it could help take some of the guesswork out of this murky journey through SPD-land.  The "Sensory Assault" part of our operations stems from the Air Assault badge that the Army awards to soldiers; these soldiers complete a grueling course which teaches them how to sling-load large vehicles and pallets onto a helicopter and how to conduct an assault from a helicopter. Pretty damn cool.  And empowering-which is what is behind Sensory Assault Operations.  The wings on our logo signify the flight/assault part of the training while the brain is the center of the central nervous system and is the control center and ground zero for ASD and SPD.  It is a visual representation of our company.  I am a busy person, a busy mom, a busy pastry chef, a busy business owner, just busy.  My son is growing older and I wanted him to start learning how to meet his own sensory needs in appropriate ways.

I see our kids as soldiers in this battle against sensory needs.  We have to arm ourselves and our kids with the physical and emotional equipment necessary to accomplish this sensory mission:  Acquiring the full and independent ability to manage, cope, and develop the necessary ways to deal with the sensory issues that will never leave our children no matter how old they get.  They will have to find ways to deal with them and not let them take over their lives.  Sensory Assault Operations is the first step on the journey to accomplishing this mission.

As a spouse of a soldier who has been in harms way many times, I have been rooted steadfastly in the idea that only soldiers can be soldiers---there is no other type of person that can qualify to fit that title.  But I am beginning to change my mind about that.  What our soldiers do for our country is incredible, I would never demean that and it takes a special person to do what they do.  Our SPD kids are special.  Most people couldn't imagine going through what they go through each day--finding any way they can to orient themselves enough to function in the "normal" world that surrounds them AND still meet the educational standards set for them.  I'm also beginning to see myself as a soldier.  I don't carry a gun, but I will do whatever it takes to make it.  Whatever it takes to get my son what he needs, to keep him in the school that works for him, to give him a stable life, to give him everything, to keep our heads above water and live the American Dream in our house and find a way to pay for everything.  It isn't easy, sometimes it seems down-right insurmountable.  But I am a soldier and so is my son and we will accomplish this mission            

April is Autism Awareness Month

April is coming fast!  It signals the onset of spring and has also become Autism Awareness Month.  Today, everybody is raising awareness about anything and everything, but Autism Awareness Month should definitely be highlighted to every parent and parent-to-be.  Early intervention is the key to helping put the "puzzle" that is ASD together.  My son is living proof of what can be accomplished through early intervention, sensory work, and consistency.  I also thank from the bottom of my heart the dedicated people who put so much of their time and effort into my son's early intervention.  There is no magic wand to wave over our ASD kids to make them better, it takes hours of therapy, love, patience, and consistency.  I also think that one of the missing pieces to this puzzle is sensory related.  My son's teacher and co-teacher told me that when he gets over-loaded and they take him out of the classroom environment and do focused sensory work with him for 10 or 15 minutes, he can come back into the classroom and focus diligently on his work.  I thought to myself, "well, that's why sensory work was written into his original IEP."  They were preaching to the choir on that one.  For those of us parents that have ASD children, everyday is Autism Awareness Day---there is no escaping it, it maps out our days and our nights and effects every decision we make-even the most seemingly insignificant ones.

On another note, HBO has made a movie called "Temple Grandin."  I can't tell you how excited I am about this movie.  It has already aired, but I don't have cable let alone HBO.  Clare Danes plays Temple Grandin in this movie and David Strathairn plays the professor that so influenced her life, and I believe Julia Ormond plays her mother.  After the diagnosis of my son, I felt like I was being sucked into a black hole.  There was too much information out there, too many different forms of therapy, too many parents who said they discovered the miracle that cured their child.  I stayed away from all of it, but well meaning people in my life would come to me with all of that information and then some.  I didn't care about someone else.  ASD is a Spectrum Disorder, hence the ASD which means that it will present itself differently in every child and every course of treatment will be different, will have to be tailored to your child.  I wanted to know how my son saw the world--I wanted to know how his brain worked differently from mine.  I can't climb inside his head, but I could read about people who had the same disorder.  So my son's case coordinator, a very dear lady who was born to do what she does, told me about Temple Grandin's books.  So I bought them and read them.  They are a must for any parent with a child on the spectrum.  I also read a book about a young man that defined Pi to some incredible degree, but his name escapes me at this point.

I think that April is the perfect month to be Autism Awareness Month.  April brings spring to us; we can begin to do more than just see the green grass and budding leaves in our minds' eye--we can see it happen right before our eyes.  It gives us a fresh start and new hope.  That is what raising awareness of Autism does---it gives parents with ASD kids hope for a fresh start, hope for a new treatment, hope for that one idea that becomes a breakthrough in what ASD is and where it comes from.  For me, each day is another chance to help my son move one tiny step closer to what all parents with ASD kids want---a bright and independent future for their child.    

Misty Musings

Today I was driving home from work--I always enjoy the ride home because of the beauty of this place.  The snowstorm was over for the moment but the clouds hung low over the hills; misty curtains in shades of gray gently hugged the hills and softened the hard lines of stark trees and power lines.  I envisioned curling up in front of a fire with a mug of hot cocoa and shutting out the world.  But the fireplace has insulation stuffed up into it and the chimney needs to be checked.  The driveway needed to be shoveled and the trash can brought back to the house.  Even without a fire in the fireplace my house is cozy.  With pictures on the walls and all of our things around this house suits me perfectly--if I could give it a hug I would.

The 2010 International Toy Fair was last week.  A train ride down and taxi to the Javits Center and we were there.  Both my dad and I had preregistered this year so all we had to do was pick up our badge holders and head on in.  I was surprised at how much smaller the show was this year.  There was so much of the same stuff everywhere, but there were a few things that really stuck out.  I was disappointed that I will have to wait a few months longer for Bixby the Bald Eagle from Zoobie Pets.  Some stand outs were Fun and Function--products designed by an OT----we will be carrying some products from their line this year.  Also coming up in April is the annual Autism walk and Expo at the Dutchess County Fairgrounds.  This year Sensory Assault Operations will be set up to sell all of our products and will be accepting credit cards too!    

A Year in Review

I'm not big on New Year's resolutions.  In fact, I don't believe in them.  I feel like it is just a way for the media and government to hound us about something.  My life has changed dramatically since I moved back to NY from HI over a year ago.  It was not an easy thing to pull off.  I was emotionally and physically exhausted, but I am so glad that I moved back.  I got back who I am and I no longer feel like my life is in limbo--we are actually moving forward here in NY.

My husband gets irritated that I never mention him in anything that I post online.  Nothing in my blog, my business, nothing.  I made a conscious decision to leave him out of those things because he is serving in the Army, and for the past year, a combat zone.  There is folly in that irritation too because it is a lose-lose situation for me.  Inevitably I will put in something--innocuous to me and everyone else--but not my husband, and I will be on the ***t list.  This has already happened with posts about our son.  It's just who you are Martin, and I am trying to find the right balance.

So since I moved home a year ago I've managed to clean up and set up a cozy apartment for me and my son.  Mom and I spent Thanksgiving last year in the emergency animal clinic with Peanut.  Almost a $1000 later, she's good now.  I managed to get the ball rolling on my grandmothers house---thank goodness my dad had already moved on my suggestion when I was in HI to have a full property survey done.  We got the septic tank pumped and I got someone in to drill the well and install the pumping system.  A friend of the family who is a real estate agent took on the house.  Then I got down to work.  I  cleaned that house out.  My dad helped with heavy moving and disposal and he and my uncle tackled the basement.  I got the main floor done, then mom and I did the attic.  We sold the house in February or March.  My grandmother is in a really nice home in Connecticut now that has an Alzheimer's unit with lockdown and has recently had to move up to a higher level of care that requires more assistance.  I found myself leaving for New Orleans on New Years Day to be with a dear friend whose husband was in a terrible car accident.  I was there for 10 days and it was an experience that I have yet to be able to sum up.  My parents had my son and were constantly calling me to come home because there was too much for them to handle.  I have also been witness to what I believe is a miracle--and that is Adam's recovery.  I remember the night before I had to leave to drive back to NY, sitting in the SICU room with Adam, just talking to him and holding his hand and just willing my energy into him.  I kept praying and I had this overwhelming feeling of peace and assurance that he would be ok.  For the 10 days that I had been there, there was no such feeling, no reason to believe that.  Today, he is preparing to go home to his family.  That is a miracle.

February found my dad and I down in NYC at the Javits Center for the International Toy Fair to make contacts for the formation of my new business.  A 2 am brainstorm had finally given birth to Sensory Assault Operations and its concept and there was a convergence of all the right things falling into place.  The next several months found me running my son to therapy and having therapy here in home and launching my business and website.  I also discovered Shaun the Sheep and how damn hilarious it is.  I was savoring everything---firsts with Gav and NY and all of the seasons and doing things with my parents.  We weren't sure what fall would bring or where the Army would send us next.  Always in the back of my husband's mind and my own, was, what is the right thing to do?  My husband's career is the Army--he has at least 7 years left before retirement.  Our son has Autism, SPD, and heart disease.  Our son doesn't do well with change and that is all that the Army has to offer our family.  After another convergence of events--call it fate (I do)--and we end up buying a house here in NY.  My husband returned from combat in September and has remained at his duty station until he is released to move to his new duty station, which is next week.  I have prayed and looked for help and solutions to these issues that have plagued my conscious for the past two years.  I was patient and open and I was shown what to do.

There are heart-wrenching private matters that have reared their ugly heads in the last 6 months.  After a year in Korea, a year in Afghanistan, 15 months in Iraq, and another 12 months in the sandbox, my marriage hit its breaking point.  Twice.  I felt that my husband and I were in a good place when he left and I think he did too.  We have been essentially been living two separate lives but together.  For the past 9 years of marriage he has been gone for I would say 60 months including training and deployments.  There have been times in our marriage while we were living in Hawaii that I almost left him.  I was existing without true affection and understanding.  I was being starved of social contact, verbally harassed and belittled, and shown a disturbing lack of interest in me and my thoughts, feelings, and interests.  I wasn't going to do another year alone in Hawaii.  I felt like I would snap.  I didn't want to leave my friends, but I knew for myself that I had to get out.  I had to get myself back.  This might sound like a lot of psychological Oprah crap, but it is the truth.  I've always known who I am, but I was allowing my husband to shut all of it off.  So I moved back.  I handed in our whole life in HI and said good-bye to our 6 years there.  It was not easy and I was in tears while my son and I were waiting to get on the plane--I didn't know if I had made the right choice and when or if my husband would throw it back in my face and use it against me.  So we left.  We taxied onto the runway and while were waiting our turn to take off my heart squeezed thinking about the life we had there, the beauty, the sadness, the fun, the laughter, the cozy home and belongings, and my friends.  As we got closer to Seattle, I was excited to see things I've never seen before and the prospect of what was ahead of me.

The first time our marriage wavered was late spring.  We were getting ready to go up to our cabin and ride Thomas the Tank Engine.  Gav was so excited about it.  I think that my mind has subconsciously gone into survival mode.  I would say that I have gotten used to not having my husband around.  I have gotten used to being a single mom.  I don't always like it, but I've gotten used to it and it is my new "normal."  I was always the doer anyway.  Dishes, trash, cleaning, bills, you name it I did it all most of the time.  I still do.  I am a survivor and a fighter; when times get tough, I hunker down and do what it takes to get things done.  I have grown self sufficient and used to doing everything so it is difficult to let my guard down.  On this day which I had been looking forward to for a long time, my husband tells me he doesn't know if he wants to stay married.  There was a lot of soul-searching and an opportunity to tell him how I was feeling when we lived in Hawaii.  We were able to mend things and enjoy his leave at the end of July.  But history has a way of repeating itself.  Will we make it this time?  It won't be for lack of trying or lack of love or lack of anything on my end.  My husband knows what I have asked of him and what the consequences will be if he ends up breaking my heart once again.  My heart has been sick, squeezed, and broken twice.  I won't allow it to happen again.  We have a son, a beautiful son who is the light of my world.  It is for him that I do everything.

This week and next are very busy times for me.  This week I will be very busy getting ready for Christmas at the bakery.  Gav has a recital in school and my mom is coming down with something.  Next week my husband comes home for Christmas,we are tentatively closing on our house, and of course there is Christmas.  It is a very exciting and joyous time for me--I love Christmas.  To everyone, I wish a Merry Christmas and a happy, blessed, and healthy New Year!          

Tis the Season

It snowed yesterday!  I swear that I could smell it the night before when we were standing at the base of the Tribute Garden in Millbrook for the tree lighting.  The night sky started out clear, twinkling with stars and promising a cold night.  It was cold.  When I say it is cold though, I don't say it with any kind of disdain like most people do.  I spent 6 years living in Hawaii where it is never cold, it is always hot.  I'm a seasonal girl.  I will freely admit that I need to have change to keep me satisfied.  The weather was always the same in Hawaii; some people love that, but it was not for me.  I like the daily change in weather here, I like the change in seasons.  There is something about snow that is magical and waiting for the first snow for me is like waiting for Santa when I was little.  The sky has taken on that snowy look and all of a sudden you see one of those beautiful lacy flakes flutter down from the clouds.  That is magic!  I was hoping that I would see the first snow from the windows of our new house, but once we move in, it will still be the first snow to me.

I have done my Christmas shopping for my son online this year.  I will pick up some stocking stuffers and little things here, but I do most of my shopping right online now and I started that while we lived in Hawaii.  I honestly don't want to have to deal with people at this time of year.  I try not to dis my experiences anywhere.  Each place that I have lived in has been a new experience for me.  I really enjoyed my 6 years in Hawaii, but it wasn't one long vacation like most people think when I tell them I lived there.  I had a double whammy in Hawaii.  The Army does its best to put you in your place whenever it gets a chance, so that was always hanging over your head.  Then, there was 1 Toys-R-Us for the whole island of Oahu.  Yeah.  So, needless to say I always had a difficult time walking into any store on the island and finding what I was looking for when I was looking for it.  Add that to the fact that I have to say that the "spirit of Aloha" is mostly myth.  I have several very dear friends and their families that I met that keep me from saying that the "Aloha" is complete myth.  I had people try to run me off the road on 3 different occasions.  I was treated completely different from locals at the post office.  I've been called a "stupid hauoli" and been treated rudely while watching my father-in-law marry his girlfriend on Waikiki.  Basic common courtesy is almost extinct.  All of these factors create a shopping environment that is not conducive to the Christmas Spirit.  The last year to two years of my time in Hawaii, I kept more to myself and stayed on base as much as I could because going out into the community was that much of a hassle.  Add to it the constant and incessant bombardment via the news, newspaper, internet, t-shirts, rallies, and enormous signs posted along the road for Hawaiian Sovereignty and the hostility toward white people, tourists, and the military, and the word "paradise" begins to be tainted to someone who arrived with eyes wide open with wonder and a heart open to the Aloha that I'd always heard about.  So I began to do my shopping online and put my Christmas spirit into making treats for my friends, my son's therapists and doctors, and the support group we went to.  I decorated the house inside and out and the highlight was going to the candlelight service at the church right down the street from our house on post.  This year I am fully enjoying my son's delight in seeing santa and all of the Christmas lights.  I am also looking forward to attending Christmas Eve services at the beautiful little old church right down the road from our new house.  Christmas to me is a time to see my son delight in the season like I remember, and for me, to just revel in the beauty of the Lord's birth.  Season' blessings to all!   

Radio Gavin

I was just trying to describe to my husband over messenger how I feel our son's mind works.  It was one of those light-bulb-flashing-on-over-my-head moments.  It is parent-teacher conference time and I just finished reading his progress report.  It was very thorough--they had one that was charted and another addressed each item on his IEP and listed what kind of progress he has made (if any) and any comments.  I find that to be very helpful since I have much less direct contact with the teachers here in NY for kindergarten than we did in HI for his spec-ed preschool.  I am really pleased with his school and his teachers.  We are really just so thrilled to be settled in one place; this anomaly in the Army world just makes me giggle with glee.  It tickles me because I can look at my son and know that I wont be dragging him wherever the Army takes us.  I feel for the first time since the diagnosis that this is the most important thing we can do for him and his future and the greatest gift that we can give him.  It comes at a great cost for my husband and I, but we are a team on this and agree to try to make it work.  We want to give Gav the best chance we can for a future as an independent, grounded, and happy adult.  So we bought a house.
 
So, my light-bulb-flashing-on-over-my-head moment was when I was trying to describe the state of our son's echolalia to my husband.  On messenger.  Gavin has always had echolalia and it kind of surges and ebbs like tides in the ocean.  His progress report says that they have had some progress with his echolalia, which is good. But I have noticed that at home he will repeat commercials verbatim.  He's just started this in the last couple of weeks.  There is innocence in his echolalia and the toys and things that grab his attention and it just disarms me.  My sweet boy is still innocent, still oblivious to the boy-girl cootie quotient.  He got some money for his birthday so we went to the toy store to pick something out.  He wanted the swan princess castle.  He had seen the commercials and it never entered into his sweet little mind that it was a toy for girls.  It was to him, a cool castle with music, things that light up, and swans.  The commercials that he tends to memorize verbatim happen to be the barbie dream house commercial (the one with the elevator in case curiosity was keeping you awake), the barbie RV commercial, and the Moxie Girls commercial.  This leads me to confess something else:  My son watches TV everyday.  Yes.  He watches a little in the morning  and I sometimes watch with him and prompt him to answer Dora's questions or answer Dora's questions myself.  I'm trying to get him to notice the cues and I don't care if it takes a TV program to help him with that.  The other reason I let him watch TV is that he has learned so many things from some of his TV programs that he would not pick up from other people or children because in social situations he can't read those cues.  Of course, I restrict the channels he can watch--we watch Disney, Nickelodeon, or Nick-Jr.  I also allow him to watch TV after school.  I know from experience that a whole day of focus and structure wears on my son and I can't push him once he gets home.  Home is his place and I leave him be to unwind in his own way.  OK I have digressed too many times.

I had better type before my light bulb burns out!  I have come to think that our brains operate like a radio station; you have AM and FM and both frequencies have different stations and our brains have to "tune in" to pick up the right broadcast.  Its like a majority of the population operates on different stations in FM but his signal is strongest on AM.  His brain is tuning and it processes what it has trained itself to look for; the "stations" that come in the best (meaning he is tuned into the right station and information is being taken in and processed), come out in his echolalia.  Like his echolalia is his brain's way of showing us what information Gav has taken in and is processing.  Looking at his disorder in this way might give us a better way to see how his mind works and analyze how the information he is being bombarded with is processed and sorted.  If somehow we can figure out his "station," then we will be able to streamline the learning process and tailor it to his "station."  Echolalia could simply be like a record skipping or a brain stutter, I don't know, but the whole station thing deserves a closer study.  It might be a good tool to develop to help people better understand our Autistic kids and help find each child's "station."