Oh yeah we are wired differently

As I check the latest news on the web I come across a headline that grabs my attention...."Gene associated with Autism may alter how brain functions".

WOW!!!!! Glad the scientific world is catching up with the parents in this instance. I know that seems a little bitter but as most of us on the inside of Autism know our kids have are wired differently than our "neuro-typical" kids.

Now this gene is present in many people through out the world that do not show signs of ASD but may have had some other learning issues through out their lives.

Ok I am done venting, so let's look a little closer at what the gene actually does. The CNTNAP2 gene is the gene that is associated with a higher risk of ASD, but it also ADHD, Tourette's, Schizophrenia, and other language issues. Now in the frontal lobe the brain functions that reside there are motor skills, language recognition and other learning functions. What the study is showing is the frontal lobe may be"over wired".  I guess that this could lead to sensory and information overload on a scale that we can not imagine, and that our kids can not explain. Which would be an explanation regarding some of the meltdowns we see.

Now that we have some confirmation to what we have always expected how can we use this information to bring our children out of their shells, what new methods of teaching can we learn from them to help them to adjust to our world with out retreating into theirs. One way that is available to us in this day and age is the technology advances that are available to us. The computer and it's close relations ( Ipod, Ipad, PDA, Gameboys et al) are proving to be a great way for our kids to learn and communicate with us. My 9 year old is currently using a web based typing program from the BBC called Dance Mat Typing http://www.bbc.co.uk/schools/typing/ . It is free on the web and teaches them in a very soft way on using proper keyboarding techniques. This is a great way for our kids to learn to put on "paper" what they are thinking. Another great tool that we have found is the IPod Touch, you may think that this is just a fancy music player that can play games, and yes it is that and so much more. Now the wonderful people at http://www.handholdadaptive.com/ have developed applications for use on the touch screen hand held devices that are changing PECS programs with their application IPrompts, you can create your own picture stories, choice tables, schedules, and countdown programs to assist you child in learning their routine, making and communicating their choices, and much more. We purchased it for our "1st" grader for his school IPod Touch. Another great function we have found with this tool is the ability to use it to redirect and entertain our kids on long car trips, you can and I have down loaded feature length films and TV episodes for a fairly reasonable price at the ITunes store.  A word of caution here for your ITunes store account, make sure you are using a password that the kids do not know or can figure out, otherwise you may find receipts in your email for all the seasons of their favorite TV show.

Now with the current pace of technology I am very hopeful regarding the future of our kids and how we can help them adapt to our world much easier than they ever were able to in the past.

Second shift, second thoughts...

Did you ever do something that you thought would be good for your family, but as time goes by it starts to tarnish and it actually begins to be detrimental to your family and starts to wear on you also. Now I have always been a bit of a night owl, I have always been


able to be up late going to sleep sometimes as late as 3 or 4 in the morning and getting up the next day and functioning at or above par. This has come in very handy especially with our 7 kids, being able to burn the midnight oil if they were fussy or if my wife needed a good night sleep. I am no hero but there is something nice about sitting up with your kids watching a late baseball game or a particularly good movie, or reading them a story until they crashed in my lap on the recliner with me following soon after, waking up a few hours later with a stiff neck and sore ankles ( long legs feet always hand over the foot rest of the recliners) and crawling off to bed.

About a month ago I agreed to start working the second shift at my job, a little more money and a ton less BS than the day shift. And the quiet, oh how I love the quiet. I do my job, listen to my pod casts, and the 8 hours were flying by until the new school year started, and all of the kids are out of the house by 8:30 am and I get to take a nap, but I am finding it harder to get up and get going on the projects I have planned. I even skipped a job interview today, I hope I will be able to reschedule it but if not, shame on me. But the biggest issue is my kids, they miss me and I miss them so much it hurts. Now 4 of my kids at home now have Autism like I have explained before, and they don't really understand why I am not here just that I am not here. And it is really really putting a hurt on my wife. These are things that I just can not abide with, so In the future you will find that I will either be back on first shift at my current job or I will be with a different company. Please keep me in your prayers while I discern what path God wants me to follow, and thanks.

HAPPY FALL

I know it is not fall yet but my 9 year old Peter,ever the observant one, has declared it officially fall because it is September. This is also while he is stripping down to his skivvies and asking to go in the pool, which he did at least 4 times today. Now I know that with his incredible memory Pete will go places, but currently I am ever surprised at what the boy comes out with. He will make wonderfully cute comments like "now I can think like a girl" from The Fairly Odd Parents cartoon, as we are walking into a store. But tonight he just once again blew my doors off by asking me a question when I came home for dinner. I was at this computer looking up something for my wife Lynn, and while I was searching I brought up my Itunes and checked for new podcasts, he walked over to me and asked if I was looking for "have mercy on us, and on the whole world". Now I have 2 Divine Mercy pod casts in my Itunes feed, but he does not know that the line comes from the chaplet. I did once have EWTN on when they were showing some of their children's programming and I think one of the shows was about the Divine Mercy, but.... that was 5 months ago. I do know if you walk into my house and say" For the sake of His sorrowful Passion" you will get the response " Have mercy on us and the whole world". Now I have been growing in my devotion to the Divine Mercy from Jesus through St Faustina and will be looking for ways to bring it further into my home. As St. Faustina said "Jesus I trust in You."
Have a nice Labor day every one, we are off to my parents house to celebrate their anniversary.

1 week to go.

One week from today ( it is Friday now) will be one of the hardest days in a parent's life. Dropping a child off for the first time at college. At least we don't have to put him on a plane, alone to fly to the other side of the country. How do you get the mini fridge there? But that is a different problem. Now as a family that has a little autism in the house this is gonna be a MAJOR change. Our first diagnosed Peter (HFA) has attached to Kevin and will be the one that notices the change the most. Remember Kevin made the dinner last night? Well Peter saw what he was doing and asked Kevin what he was doing, & he was told that he was cooking dinner on the grill and Peter said "oh you are a Dad now". Well that is the kind of wisdom that Peter is known too come out with allot.
But back to the issue at hand,my son is off to college in 1 week and we are soooo not ready. Fortunately we have friends & family near by so we have that going for us! Well the DVR is calling and the ball game is on so good night.

August 2010

Well here I am keeping the semi-annual blog going... been so long I forgot my password. Well seems I have got that figured out. Since my last post 15 months ago I am the happy owner of an Ipod Touch, keeping me sane at work, really, really, really would like an Ipad, but as my Gram would say " if wishes were horses, beggars would ride". All too true, but isn't is sooooo pretty.
I am now on 2nd shift 3 to 11:30 so during baseball season I am getting great use out of my DVR s don't tell me who won! 2nd shift has some other complications that have come up, like who is making what for dinner. Most days I am able to get dinner started before I leave for work, today though I had our oldest son Kevin make the entire dinner. A nice London Broil cut cooked o the grill, his first, he stared the charcoal, prepped the "steak" and cooked it, although with a couple of texts from me. He also make a side dish and dinner was on the table at 6:05. Yum!
Well ballgame is on, need to pay a little more attention to it. See you all soon
Mark

Tough day at the Table of the Rock

This weekend we had a Jr prom which our oldest son attended with his GIRLFRIEND!!! So I did not get enough sleep, but that is a normal occurrence for me. I finally was ready to put head to pillow a little after 4 am, after brushing crumbled potato chips off of my side of the bed (thanks Jacob) I fell asleep saying my prayers. Morning came a little too quick but my wonderful wife let me snooze till 9:45 am and I dragged my butt down stairs, kissed who ever was awake at the time and started to get ready for 11 am Mass. As it was I probably cut it too close I arrived at church, and started looking for a parking spot..... 1.5 times around the block finally a parking spot! I swung in, locked the car and hurried the 1/2 block to the entrance. Looking abut it seemed to me that boy there were ALLOT of Catholics at church today.... I got inside and looked for a missalet... none left except for the LARGE PRINT EDITION, which I took and actually felt good. Boy the church was packed this AM, I found a seat in the last row just at the entrance hymn was finishing and I scanned the bulletin.... week 2 of First Communion. This explained the numbers. Now I actually love the First Communion Mass, it is in my top ten Masses. Father and Deacon Tom were processing through the congregation sprinkling the masses with Baptismal water while we were singing the Gloria. About half way through the Gloria it hit me... I should be sitting up front with family & friends as Peter was about to receive his First Communion! Just then Deacon Tom got me with a good broadside of Baptismal water, I blessed myself and then the water works started to leak. I praised God and thanked him for all He has blessed me with, good friends, a Great family, and a multitude of opportunities. I got control of myself and opened to the first reading, the psalm, the second reading, and the Gospel. I was going to be able to do this and hold it together. Father gave a very good Homily, addressing the First Communion class. All was going real well until Father started asking what the kids ate for breakfast, cereal, toast, eggs, popcorn?? oops they meant Poptarts, oatmeal, ( doing good Mark, you CAN do this) then one of the kids said Donuts ( which is what Peter likes for breakfast) and s Emeril say BAM, the water started to flow again, slowly through the creed, and I lost it at the beginning of the offertory. I waited for the ushers to go up for the collection and I ducked out. Tears flowing I made it to the car, I sat there for a minute or two so I could see where I was driving and drove home. I got home to Wow that was a fast Mass and I told Lynn that I could not hold it together due to the fact that Peter was not receiving his First Communion and she understood. Now I know that he will eventually receive First Communion but it still hurt, and we will also have this to face with Jacob & Nathaniel. I would at this time like to offer my congradulations to my brother and his wife and family on their son's reception of First Communion this weekend!

Going to bed soon, need to do some laundry.

Mark

the world

In my last rambling post I was describing a small part of our autistic life. We have further embraced our advocate life by my joining our local ASA's group planning our fundraising walk. It has been a huge deal to me and my family for me to start to "advocate" more for the family and the community. I am not sure where this will lead me but as a little trip to our local Six Flags for a graduation celebration for our now 7 th grader we are on the right path. We of course hit the water park with the"little" guys, all 3 were super excited even with the drizzle coming down. Well Peter our big "little"guy found that he loves, loves, loves water slides. and he spent at least an hour sliding. We then moved to the new "Wiggles" area of the park very bright, very loud Wiggles music playing, over and over and over. All 3 went on a number of the rides with Mom & Dad as well as alone. Very BIG steps for these guys. As aside note we have a very small amusement park in our area also and we used to love taking the boys there, then a switch went in Peter''s & Jacob's head, "no parade" was the mantra we would hear, it was difficult since our oldest actually worked there and if Peter was with us for drop off or pick up a full fledged melt down would begin in the car. NOT FUN!!!!! Back to Six Flags, our oldest needed to leave for work so I was going to stay with the other older three so they could hit some more rides, and Lynn and I were discussing this as we walked to the other new "little" kids area, "Looney Tunes World". In this new area they have a nice small roller coaster, train ride, car ride and other small rides for the medium to big tots. Well thanks to Sponge Bob, Peter wanted to ride a roller coaster, as did Nate our youngest twin. Well we got Peter buckled in and Nate as well, I sat in the car with Nate and pulled the bar back to secure myself and I could not get it past my knees. Big disappointment! I swapped out with Lynn and off they went.To say tears were welling up in my eyes as I watched them go around a realization popped into my head as I watched my 2 autistic kids that went on the ride act as non autistic kids, the beautiful smiles of fear that you get on a good coaster was evident. The ride went around 3 times and as it hit the last turn the operator announced "this is the last time around" and Nate said to Lynn" thank goodness". Needless to say Peter went on that ride 3 more times. Lynn and the oldest had left to make the ride to work and I told Lynn to leave all the other kids with me, they were having too much fun. We made our way around the park, going on nice long train & swan boat rides and we made our way up to "Frontier Town" where they have 2 coasters and a nice little game area. The "Steaming Demon" was closed but the "Canyon Blaster" roller coaster was open so the big kids & Peter went on that one, fortunately the lines were short because Peter was hooked! He went on it at least 4 times and each time he got off he wanted to go again, and again and again!!! Well the park closed and needless to say we will be going back and we will be heading for the "Comet" one of the top rated coasters in the world....... I can't wait.