Sunday, September 25, 2011

Balance

Going through my notes of the daily drama that played out just about every day there were many like this "Last knight was rough, his forehead already with a large bump from his constant head banging , now his right temple are swollen almost looking like a deformity. I heard what i thought was someone hammering a nail into wood and it sounded like it was in the back yard.  BAM BAM BAM  over and over .....finally as i looked out the kitchen window. There was Dalton on the deck , gripping the hand rail with both hands leaning back with full force like he was trying to break the board with his forehead.  BAM !BAM! BAM! ....I ran out the back door to try and stop him .  The redness of his skim almost ready to bleed , His look of terror so intense , the screaming ....Me yelling his name, anything to get him to stop.  But it just continued , very difficult to watch as my stomach just started knotting up.  All i could do was wrap him up in my arms as he fought me with every ounce of energy he had trying his hardest to get what ever it is that is hurting him  out of his head.  That's all I can think off that would cause anyone to do this to them self . This time was one of the worst  , usually I can tell him to do deep breaths and that will calm him down but this was not working.....so i picked him up took him to his room.   Him fighting the whole way , My neighbors must think I  am abusive, but its all I can do  just to get him in his room where i turn off the lights and sit with him till its over....."  yes there are page after page of things just like this ,  But then every now and then there are some relay fun ones too....and don't get me wrong , autism sucks!!!! it sucks big time and its different for everyone.   There are some days where there is no screaming there are only laughs or just quiet.   During the summer months when  all the other children are out of school enjoying the hot weather at the pool waking up at noon , Dalton and children like him go year round , he has been doing that since he was 2 and half.  Only taking 1 week off for summer break except one summer where they thought he was doing so well two weeks would worth a try....Here is the list I wrote  and remember this is only in two weeks.
1.Last day of school as the little short bus pulls in front of the house , I see the door open and like a rocket his little back pack shoots out and lands in the drive way.  He takes two steps down to the curb and grabs the door as the bus driver his trying her hardest not to let Dalton get hurt by slamming the door she final puts her hands in the air and lets him have control and slam the door.  I'm just standing there shrugging my shoulders to her with my palms up as if to say ....I know  i know ,,  as he turns around to walk away...I see he has this little smurk of delight , walked right over to his back pack picked it up and went inside.  It was all I could do not to let the bus driver see me laughing.
2. Tattoo
3. Shaved head
4. Peeing off banister in house
5. Pushed kid off bike
6. Lighting fireworks off in house
7. Got lost at friends farm
8. Boating , jumped off boat and started swimming away
9. Fishing from the shore at raintree , got naked and started chasing biker
10. Key in light socket
11. Jumping on trampoline in lightning storm
12. Got hit by car on stolen bike

Sunday, September 18, 2011

Moving Christmas

It was after we had sold our house , we were living in a rental just up the street. Our plans were to move back to my home town but things were going so well where Dalton was going to school ( Stars program in walnut creek Ca).  I had called my mom like have done so many times for advice and she had happened to mention that the Lees Summit School district was now using the stars program.  I was floored , this is great news and that's when I started seriously thinking about moving back .  Not only could Dalton be in the same program which was really starting to work.  But we would have family near, the kids had only seen my side of the family on short 1 week visits and I really wanted them to know there grandparents while they were young.  Not only that , but I couldn't think of a better place to grow up.


It was Christmas day Dalton was 5 Daniel was 7 and it was after we had our  own  little family Christmas and we were getting ready to watch a movie as the kids played with there toys , well actually I should say Danielle was playing with her toys and Dalton would just play with the Box that his gifts were in.  I was just sitting on the couch and Dalton had this thing where he would climb on my back and like a little monkey he would shimmy up to my shoulders and like a circus act or something he would stand on my shoulders with the most amazing balance it was pretty cool and he would do it at least 4 or 5 times a day. I was ready to sit down as  I leaned to knock his balance and catch him and put him down.  We were all there when it happened ,  It was the Best gift I had ever gotten in my life!!!! For five years waiting for the day for Dalton to say something, Anything !!! And after a teacher telling me he would never speak, even made this more special.  Not only that he spoke but what he said.  As I had put him down and was looking at my wife. I was about to ask her something when this Little voice looked up at me and said " Daddy" .  Did he really just say that ???? OH MY GOD !!!!  A tear was coming from my eye as I sad " say that again Bubba" . This time it  was DADDY!!!!
That's right you stupid b****  teacher is what i thought as picked him up and hugged him and made him say it at least 10 more times and of course called Gram ma and had to have her hear it......

Saturday, September 10, 2011

Heart of an angel

It was the beginning of December , Danielle birthday was coming up soon and she had asked Grandma and Grandpa for a new bicycle.  She had out grown her first bike while Dalton still had his , he was getting close.  Dalton could ride anybody bike actually anything with wheels , he never had training wheels . Well he did but it was for about 10 feet when he jumped off his bike and threw it on the ground and just kicked at the extra wheels.  I took them off and away he went.  But this was Danielle's birthday and she was ready to go pick out her bike with the money she had gotten from her grandparents. I packed her and Dalt into the car and off to Kmart we went , at this particular Kmart they had special needs employees , something I had never really paid attention too until that day.  As Danielle was picking out her bike , that was of course on the very top rack .  We waited patiently for a bit , as I finally started looking around for help or a ladder to get it myself .   Dalton had found the perfect bike for him, and proceeded to ride it through the store.  Oh and did i mention he never had learned to use either the pedal breaks ....but most of all the hand brakes since this was a ten speed and about 6 inches to big for him so his feet barley reached the pedals. I had found a rolling scaffold and began to climb up to get Danielle's bike when I had noticed Dalton rounding the automotive isle and headed for home appliance area.  I finally get the bike down and I put it in her hands as i ran off to catch Dalton.  Danielle had put the kick stand down and had a different bike when I got back with Dalt.  I said "whats up?" . Something wrong with the other bike?  No she said , but this one is cheaper,  I was lost didn't understand what she was getting at she had plenty of money thanks her Grandparents. She said this one is just as good and if I get this one then I can buy Dalton a bike too.  I don't think I could have been any prouder and shocked to see a 7 year old with such compassion for her brother ,  What a great Day and I made sure she knew that she didn't have to do that , I had planned on getting Dalton a new bike in a couple of months. But she insisted and so we went to the checkout line with two brand new bikes , two very happy kids and one extremely proud Dad.  The bikes were only two days old ridden only once and then parked two feet from our front door inside the white picked fence with a gate that guarded our front yard.  After putting the kids to bed I was getting ready to work the night shift and was headed out to put up the bikes when I opened the front door and Dalton's bike had been stolen.  I couldn't believe it , such a selfish act by some one not only to a special needs child but a gift from a very unselfish 7 year old ......

Sunday, August 21, 2011

Almost Lost



Danielle was 6 Dalton was 4.  We had all been playing at the park that was near our house that beautiful spring day…we were tired and time to go home.  To take a nap for a minute before starting to fix dinner.  To early in the year for a swim ,  the pool still half full of the winter water , just waiting for me to clean it , but not today.  Danielle had spotted a humming bird in the back yard and asked if she could go look for it ….sure …not worried the fence is 6 ft around the pool and there is a lock on the gate.  I laid down, not sure for how long till I heard….” Daddy! Dalton is sinking!!”  Instantly  running for the pool, one hand grabbing for the top of the fence and with one swift motion like a gold metal athlete clearing the high jump….then landing flat on my back on the other side. I could see Dalton, still in diapers, his eyes wide open and his mouth just about to go under.  My heart pounding I dove and got one hand under him and pushed him to safety with only a little cough and a huge thank you to god.  Every one was OK…so I thought.  After all the hugging and kissing and tearful I love you…..I noticed Danielle wasn’t saying anything.  So I went to her picked her up and called her a hero, “you just saved you’re brothers life” if it wasn’t for you  ...”  Big hugs and for months after …I bragged to anyone who would listen , she has had to let her brother take almost all of our attention.  Not that we don’t love her just as much, it’s that Dalton has autism.  You probably wouldn’t know it at first glance. But after a full day with the behaviors that include, hyper activity, head banging (sibs) self injures behavior, so sever that he actual has developed a knuckle on his forehead and has put head completely through walls. Oh and the screaming, not sure I can put this into words the type of scream. I guess blood curdling; maybe gut wrenching, nails on chalk board. For hours at a time.  How ever I’m trying to paint this picture for you it is no where near how difficult the was not only for Danielle but for us as parents.  Lots of feeling helpless as you watches you’re beautiful baby boy, screaming like he is on fire while his bloodied head pounds against anything he can find.  Of course you try to stop it but like I said this would go on for hour and the hours ran into days and the days …it’s all a blur anymore.  Trying to find the answers …how to deal with this was daunting.  A lot of nights all night on the computer reading anything I could get my hands on about the think called Autism.

Now you may get the severity and the ciaos we lived in. all our nerves were at a frazzle.  It was about 6 months later when it was just me and Danielle and I could tell she wanted to say something.  With her eyes looking at her shoes and her head held down.
This 6 year old little girl had the courage to say “Daddy, remember when Dalton fell in the pool?” yes I said, thanks to you….she stopped me and said ….” He didn’t fall in, I pushed him”.   She had been walking around with this guilt for along time and could not take it anymore.  I told her it still doesn’t change the fact the you saved his life. And that was the last we talked about it.  Until now 6 Years later this poem speaks volumes if you know where its coming from …the pain she was dealing with by having a special needs brother and was at her breaking point.  I know that feeling but I guess the times I would say “never ever, ever, ever, ever, give up like my dad would say to me when I was little. Maybe those words helped. Because Now just like then, are so proud that she is my daughter and that Dalton is my son.  And I know there are great things for both of them in the future.


Monday, July 4, 2011

Stars in my eyes


After two years in the public school system and dozens of IEP  meetings and a fresh out of college Speech therapist who I felt really did care and I will explain .   Dalton was put into the class with all special needs children, anything from autism to down syndrome , this is where the head banging began and the chewing on his shirt collar.  I was still learning how and what the IEP meetings where about and how helpless I was in them.   Its just to difficult for a parent to explain and articulate the needs of there child especially if that child has special needs.....(it is for me) . I don't think there was a meeting where  my voice didn't crack and or my eyes didn't start to tear up .  I took notes and brought any information that I had read or gotten from the Internet .   Desperately wanting my son to at least just say 'DADDY' .  There was the new speech therapist as i mentioned , bright , young , full of enthusiasm and hope.  She asked us to come to the school to see a video of a new system that had allot of success it was called PECS ,  its where the student uses pictures of everything and hands them to you as you say the word...Like if they wanted to go to the bathroom there was a picture of a bathroom ,  If they wanted Mommy there was a picture of mommy.   She called us up and asked to come to the house to explain and was real exited , it sounded like a good idea ...she also had a video she wanted to show us of how it worked and the success story's .. it all sounded good but we had reservation of Dalton caring a book of  pictures , but it seemed to work on others.  We tried it for at least a semester and he was communicating a little with the pictures....at home he still would grab you're hand and lead you to what ever he wanted with out ever uttering a word .   One night while i was reading up on anything i could get my eyes on about autism. I stumbled across the STARS program , it was not very far away from where we lived and it was worth a look at .....so we called and made an appointment there happened to be an opening but there were pre requisites.  We went in for a visit and discussed Dalton's needs and they started the evaluation.   The first thing was , they explained how they would use there method and that we had to be trained to communicate the same at home as they do in the school.  The next was about the behavior ,  they told us that no matter what when they start that he will more than likely have a melt down and we were not to respond in any way . If we had trouble with that just go stand in the corner and don't make eye contact with him.....So it began....the toy that he was playing with they took away.  He had no reaction at first , he got up started walking into the other offices and slamming doors ....a little screaming and more slamming he came back , we did nothing.  I felt him look at me as my eyes were fixed on the floor , My wife had to get up and stand in the corner , which he followed over trying to get a reaction out of her she could only look down. After about five minutes of this he sat down beside me and I looked at the doctor and with his nod i put my arm around him.. The Doctor said " perfect" ....now he just learned that by doing the destrucion is not going to get our attention.

Info overload

Exhausting hours reading and talking to anyone who would listen.  I learned that there is whats called a spectrum that autism has . From severer to highly functional , but for all cases early intervention was the key .  I read this time and time again, so at 2.5 years old ....(his older sister not even in preschool yet) we set out to find a school.  With high  hopes in what we knew and thinking that the public schools would help we started locally and visited one of the "supposed better schools " in the area... . They assured us that they knew exactly what was needed and that Dalton was going to do fine.  First day of school for Dalton was about 2 hours long.  The school had called and said they couldn't get Dalton to stop crying and he wouldn't play with any of the other kids , would you please come get him?  Well we must have just had bad luck with that school and besides it was all the way across town....so we decided to find another.   We did and it was almost in our back yard only a two minute drive away .  Smaller class room with teachers that dealt with special needs children , even a volunteer that was an older Lady that had a son that had down syndrome and was very compassionate. The first day was rough for Dalt , but they soon found out his love .... THE SWING.  Not just swinging like most kids , But the only way to describe it is extreme swinging!!!

  As I was going to pick him up from his first full day driving down the residential streets winding back into the quiet neighborhood . The school comes into view with trees and shrub's about 10 ft tall in the front and the sides giving shade to the play ground and swing set area. I see a little black ball that keeps bobbing just above the tree line with a rhythm. Didn't really think much of it as i pulled in the parking lot.  Walked into the school to Dalton's class room as they were preparing him to leave.  The teacher was trying her best not to act like anything was wrong. After i had his hand and his backpack walking out , is when I realized it was Dalton head that was bopping above the treeline.  It just about gave the volunteers a heart attack . The only one that it didn't bother was the teacher Marie....she thought it was awesome. That was when I knew that this was the place for Dalton.  This was also the year we were introduced to the 'I.E.P" (individual education plan).
 
The next step was to plan out what Dalton needed , of course i had never even heard of an IEP so i felt that the school and the teachers knew more about what he needed than i would. So i just listened to them and agreed with everything they suggested.
Which was they felt he needed an occupational speech therapist for one on one time to try and get him to speak.  One day about three months later I had bumped into the speech therapist in the hall way as i was picking him up and asked her if or when she thought Dalton would ever speak.  With that same look as the doctors who gave him the  diagnosis of autism she said very bluntly " he will never talk".  I was in shock to hear someone who's job it was to get someone to talk or to help them overcome a speech impediment say there was no hope especially to the parent.  Not only did it make me agree but it made me so driven to prove her wrong.  Earlier that day i had heard on the radio that it was national seat belt day and to make sure you wore you're seat belt because they police would be out writing tickets and looking for offenders.  Dalton was still ridding in a car seat at the time and after getting him all buckled in and putting on my seat belt off we went.  The frustration of hearing that from a so called professional how dare her i thought...I remember thinking  'if its the last thing i do i will hear Dalton talk".  as i turned a corner Dalton was wiggling out of his car seat so i pulled over , getting out and putting him back in and buckling him up.  As i was pulling away from the curb i reached back to put my seat belt on just as  a motorcycle cop was rounding the corner. I saw him breaking his neck to check my seat belt that i  had just clicked in...i didn't even look back till i heard the siren and saw the flashing red light.  I thought no way is he writing me a ticket when he pulled up and asked for my licence then went back to his bike with those knee high leather boots and mirrored sun glasses on. Normal routine stuff , then as he came back and handed me a ticket to sign . I couldn't believe it , cant wait to do something for you someday i said. "is that a threat " he said. No was just wondering if they sold men's clothes where you bought those boots.   He didn't like my attitude wrote the ticket with out another word and i drove off ....i did fight the ticket and won..but that's another story.

The ride home

 I was determined that this was only going to be a minor set back and that there was no way this was going to as devastating as they seemed to make it.  Besides the autism I knew about was the kind where the poor person couldn't even make eye contact or there arms were flapping around .. No way  this was what they  diagnosed ,  defiantly need a second opinion.  The more I thought about it the more i wanted to get home get on the computer and start my investigation.  I was in such a state , getting home was all i could think of.   That's when the siren went off and the flashing red lights behind me ....speeding i presumed .  The officer pulled up and noticed i was flustered and anxious .  Asked if everything was OK ? ...well we just found out our son has autism after 8 hours of testing .   His face went from suspicion to complete understanding.  My nephew was just diagnosed ,  handing back my licence. I asked how old he was he said 3 years old.  Good luck was all he said with an understanding and empathy of what we were about to deal with.