What about tomorrow?

When you wake up in the morning how does your routine begin?

Whats the first thing your child does?

Does your ASD{Autism Spectrim Disorder} Child eat cereal with or without milk? Can he hold a fork and feed himself? What are the doses of meds--if any?? What route do you take to school?? {cant deviate!}Who does your child trust at school? Does someone help them in the line for lunch?? or do they prefer to bring food from home?? OH I HAVE ONLY SCRATCHED THE SURFACE!

The reasons I ask these questions are because of the thoughts that raced thru my head as I lie in bad tonight trying to get my guy to sleep.

What if you were gone tomorrow? Who would take over? Who would know the answer to these questions?? Sure many people might have some clue but why not help them and in doing so help your child in the case of some horrible thing happening and you wont be there to make it better--Afterall you are the only one that really knows ---

Many years ago I designed a mannual -- A sort of cheat sheet on my kid. I took a large three ring binder and bought a box of clear cover sheets and began writing everything I could possibly remember or what I thought was important if I wasnt here tomorrow--

And I did it long hand with out the aid of a computer-- yes it was the dark ages--

Vital info such as name and address but also relatives with addresses, social security number phone contactlist including friends who knew my child. a page of medical info --insurance doctors and meds,  pages on routines like school days versus weekend days, sleeping ,eating,grooming,stimming habits ,things that sent Dakota to the moon, things you could negociate things that were cast in stone, schools and teachers and staff that were accepting and ones that werent or ones to watch,clues on how to navigate the regional center or social security or IHSS, referrals to groups that could help and even clippings of articles that might give insight

Perhaps it sounds like a lot of work with time that none of us have but it is like a life care plan that no one else has cuz it is in YOUR HEAD-- I have since started a few files on my computer for these very same things but feel that not everyone would find that info right away and GOD forbid if tommorrow I am gone I want Dakota to have the smoothest transition possible  I know it will be hard ANYTIME but I at least owe it to him and who ever will take on my journey a few crib notes!

Letter to My Aunt

My aunt has taken an interest in learning about Autism and she has called or emailed me a couple of times in the past week about programs that are going to air-- I makes me extremely happy yhat someone in my family has taken time out of their busy life to learn a little more about Dakota and this terrible disorder

She had told me about Oprahs show and i responded back with the informationI had -- I have not seen the progarm-- I have taped it but not veiwed it so I will reserve my opinion until i see it but this is what I wrote :

Thank you Auntie
the autism  boards online have been buzzing about it-- there's quite a bit of controversey about Oprah who before this has been extremely resistant to do a show on Autism---
I guess shes had her battles with other "lobby-ists" and supposedly she has a lot of pharmacutial  sponsors  -- so she has never had a show that discusses the topic in depth--All eyes are on this show to see what info is produced
Many of the Moms on the Autism web sites are very involved with Bio-medical treatments  followed by the DAN protocol __Defeat Autism Now  which believes in chelation therapy and GFCF diets{glutein free cassein free} Oxygen therapies and many other  "controversial" strategies    Also many of them have children who have fallen to Autism after their childhood immunizations and they believe that the Theimerisol {mercury perservative in the shots} caused the Autism
No one wants to highlight or talk about  this-- most shows are PUFF pieces on kids with exordinary talents {what most refer to as "savant-idiot skills}{similar to the movie--Rainman}
The flip side of all of this is  we just dont know what causes Autism -- but it is a  horrible disorder that affects the whole family--mainly because the behaviors effect  all members of the family and have to be addressed  and managed constantly--every day all day long    there is a huge amout of denial {usually with one spouse and sometimes with the whole family}. It is also a disorder that has one of the highest divorce rate something like 80%

My biggest revelation is that every child who has Autism is different  and has different strengths and weaknesses-- this poses a real challenge because the same applies to treatments. What seems to work for some doesnt work for all so you have a population of parents who are desperate for a "CURE" . We go thru  life grasping at every "solution" that comes our way-- millions of dollars are spent and hopes are raised and we find this kid benefited from it but mine didnt -so another "CURE" comes along and you try again  usually to find that it isnt going to work on your kid -- and you are so frustrated because it had so much promise and it had worked for this kid or that kid  but not my kid .

My final obersavtion is  we all hope and pray that a cure will be discovered but reality is that those that have Autism  now will probably always have Autism --all we can hope for is eventually they will learn how to treat it and  there will be children in the future who will  only hear about how terrible Autim was!

WELL NOW THAT I GOT ON MY SOAP BOX
         I will also post this  on my Journal!
anyway
Thanks for the heads up and keep sending me this info-- I truly appreciate it

Quick Note about Summer School

In my humble opinion Summer school is a disaster for kids on the spectrum especially for those who have the OCD thing going too!-- I mean lets face it most summer school is altered hours often in different rooms sometimes with different aides -- often the libraries or cafeterias or even parts of the playgrounds are closed or restricted there is nothing normal or routine about summer school -- I think it takes as much time as the whole session to get your kid adjusted to turn around and tell him or her well its over then you have another transition for no school and them September creeps back around and here you go again  If you need them in school for work or out of necessity then I guess you have to give it a try  but I say its just one more step I found better left out

The Shower

It occurred to me that I havent ever talked about the shower and how we use it as an effective tool in our home-- For the Autistic child or person there are usually routines or rituals with most all activities at home and Showering is just a part of the daily routine--

I discovered that utilizing it as a "one stop shop" worker well in our home-- I have always referred to it as --shit shower and shave-- I know a little blatant but         IT WORKS   once the "personal needs"time occurs in the bathroom we go right into a shower routine--I have started by writing a a step by step guide of how to prepare the water with minute details such as diagrams of where the faucets handles should be positioned ,how to test the temperature all the way thru to stepping out of the shower and pulling the curtian back so you dont get tangled in it when you step out

Also included in this process I equip the shower with a soap by Johnson and Johnson that is in a mesh sack so he doesnt have to manipulate a washcloth and a bar of soap{a very difficult task for kids with tactile issues}Baby shampoo so when washing his hair there is no worry of burning his eyes and this is a BIG one the toothbrush and toothpaste one of the most difficult things to get our kids to do .  Kids with Autism have an extremely tough time with the dentist office and because of their diet often times have problems with the teeth--so brushing in the shower takes away a step that has to be done at some other time during the day and if youe child showers more than once a day then you get multiple brushingsin that way too!

I cant tell how much this has help streamline our situation at home-- it is a little more time consuming in one lump sum but the result is that it is hopefully done for at least 24 hours!

Looking for a Celebrity--ha ha

Well after the last entry this should be a no brainer!! I am constantly amazed at the cost of trying to entertain a family. I am all for things like movie night or game night which can be done with relatively no cost and a little effort  however having a not so typical kid kinda alters the ability to have a "normal" experience ,not to mention that most of the time a child with Autism often has selective  taste in what they want to involve themselves in   Sooooooooooooo When you have an activity that your child  will participate and have GOOD BEHAVIOR that tends to become a preferred  activity---{hope I'm making sense}

Which leads me to the next requset--- Is there any one out there who would be interested in "sponsering"  my guy so I can fill his world with the things that other kids get to do???-I know it sounds silly and there are probably many parents who  many think the same as me but honestly I just dont know how to do it--  I want him to go to baseball and basketball games, to movies like at the ElCapitan Theater,{a special place in Hollywood that premieres a lot of Disney stuff}  to see theater productions like Wicked or The Lion King, or watch a television show be taped or to stay a  nice hotel on the beach or in the mountains--

I dont know how families afford these things-- the mom and dads must work  exsessive hours and maybe more than one job to be able to provide these things for their kids --which poses the other question do they actually have the time to do these things??And when they have the time is it just easier to throw the money to the older kids and send them on their way because  Dad is so tired he wants to take a nap and read the newspaper and Moms manicure is more important than spending the one day off she has with her kids? I know I am getting sinacle and I am quite sure there are far more wonderful parents that live for their kids but sometimes I look around and wonder--

Perhaps that is why I often consider myself lucky to have the child I have-- the counterpoint to that is that he has no one elseand that is what bothers me the most who will ever know my child well enough to make his world  wonderful when I am gone? Another reason why i continue to search for solutions answers and  compromises to make his  world the best it can be!