Posting Correspondence

It has occurred to me many times during exchanging emails with another caregiver --parent or otherwise that some of the topics we discuss are relevant for posting on the journal-- In an effort to be more efficient and not have to re-type or re-write on the same subjects I will try to re-create the subject .

I certaily do not want to expose or reveal others I am corresponding with but I will do everything I can to post the most important information-- because I figure if one person is talking about it perhaps another person may benefit from the topic.

Operational Manual for your Child

Ok lets just suppose that tommorrow you disappear off the face of the earth and your child was left with someone who DID NOT have a clue where to start--- How would they survive??? How would your child survive?

Ok I know not one of us wants to even contemplate something so terrible but the simple fact is that most of us will be gone before our children are and when that happens ; even if family plays and intricate part will they really know how to make life comfortable and safe for our kids?

Most seem to think that our kids will weather the change as long as there is someone there to take over the routine --which is probably true -- but how do we go about making sure that some things are carried on without us? An Operational Manual>

Before computers a simple notebook with hand written notes and instruction was the way to go and actually was an assignment I had when we attended Cal State San Bernardino's UCDD program {University Center for Developmental Disabilities}. I still have the notebook and it has a plethora of information-- some outdated now but some that is still relevant and useable today .

I found the exercise to be overwhelming at first yet as I dove into the project it became appeasing and rewarding . To know that I made a diligent effort to provide information that might help any one who might be helping Dakota get on with his life was a relief.

I discovered that you can make it anyway you want but these are some of the things I included --First of all a title page with general info as to parents, addresses,siblings ,aunts and uncles kind of a family tree with contact info attached. Then I went in to Medical Information Doctors with contact info meds or Prescriptions and phone numbers -- The next section was Medical Diagnosis and background. Then I broke into daily routines and schedules and weekend routines and schedules,grooming strengths and weaknesses,sleeping routines, eating schedules etc.....anything you think is important for someone to know if you are not there. I include information for agencies and non-profits that might help some one ,also articles that I found in magazines or papers that shed light on ideas about Autism

You can really make this "nook anything you want it to be but keep in mind the whole Idea is an operational manual for your child---As I have started this journal on the Internet Many of the things that pertain to Dakota are now notated in this medium so you can also pick and choose what "form" you will use-- I Like the idea of a notebook for a couple of reasons mostly because some people may not have access to a computer or may be reluctant to use a computer and also there's always a chance that the info could get dumped on a computer so you have to be the judge of that Never-The-Less It is something I think all care givers ought to consider doing --for the sake of the kids having a smooth transition in the event that you might not be there.

Taking the day as it comes!

Well I am sitting here waiting for Dakota to wake up--WE ARE NOT MORNIG PEOPLE !
This is another thing I have found for Dakota that his whole day goes better if I let him wake up naturally rather than roust him out of the bed and start the day with rushing ,pushing and chaos. Dakota will not use the bathroom at school so I decided right around middle school especially going into high school that The result of behaviors at school were directly related to making him get up and pushing him off to school--- I was an idiot sometimes hollering at him to get up and the day just started with a fight -- I came to the conclusion I just didn't need it and neither did Dakota
Soooooooooooooooooooooooo I have developed an understanding with the teacher and necessary personnel at school  that Dakota gets there when he gets there and the whole day is much better for everyone---- You know they are constantly changing things at school and DO NOT THINK ABOUT OUR KIDS and don't realize that they are the ones who just pushed the button on their behavior.--For instance they will plan and plan and plan to go to a place on a specific day and all of a sudden decide that they are going to go on Wednesday instead of Thursday !
Well hello --- maybe all the other kids can tolerate that but it bothers Dakota ---Its called ANXIETY and he has planned for weeks that something will happen on a certain day and POW they have gone and screwed up his plans-- Or what about the stupid schedule at school ????  One day week they have the abbreviated schedule then al of a sudden they throw in a pep rally which screws the schedule even more-- OR --- they have a fire drill and bells start going off unexpectedly --WHAT DO YOU THINK???? If I had Autism I would be raising hell myself.
Is it any wonder our kids act out??? Just when they think they have something figured out some force changes things and flips their world upside down!
One day I took Dakota to school and the vice -principle was standing out there like a proud papa cuz they were getting the locker room re-done with new cement. So there's the cement truck grinding away no more than 50 to 100 feet away from Dakotas classroom..Now mind you there had just been a break from school and they could have done it when the kids were gone BUT    N O   They wait till the kids are back and here it is  ROOROOROOROOROO I looked at the vice principle and said "Don't call me when Dakota has a melt down at lunch because you guys could not have planned this better!"    They just don't realize how different our kids are and how things like that don't bother most people--- sounds ; smells ; colors ; even different people  it all makes a difference for our kids . We don't have the deficit that they struggle with so we don't recognize trouble until they act out then its their fault but most of the time its someone else who has created the problem.
We cant expect people to anticipate every glitch of our kids but we can expect them to be treated with respect and not blamed when they blow a fuse because of something we have done.

Another Accomplishment-Never give up

So I am sitting at home and all of a sudden the phone rings and its Dakotas aide and he is beside himself with good news--- You can tell that even the aide is absolutely thrilled by the way he tells me the story----

Dakota was at Adaptive PE playing basketball . When they concluded the coach asked the kids to go an wash their hands. Dakotas aide slyly said to the coach under his breath "That would be a stretch for Dakota" just about that time Dakotas goes to the sink wets his hands pumps the soap on them rinses and uses the hold air blow dryer on his hands--- the coach and the aide both look at each other in amazement--then he walks over to the his aide and his aide sees he still has a little dirt on one of his hands and tells him he should wash them again-- {The aide is thinking boy am I stretching my luck} AND Dakota actually walked back over to the sink wet his hands soaped them down and re-dryed them AGAIN!!!!!!Oh My God

I think the thrill in Dakotas aide was almost as great as the actual accomplishment-- To know that most people who constantly perceive your child as unyielding and unable to expand their "repetitoir" have been given a gift almost as great as yours. To discover that this child and many more that they might work with in the future do have abilities beyond the norm ----This is hope for them because it could mold they way they help other kids and it is hope for us because we know the potential for growth in our child has been revealed ONCE AGAIN!

21 and still struggling

Again those of you who have typical kids probably take this stuff for granted but here's some food for thought--- I cant tell you how many times I have been in a store and a child : doesn't matter the age 2 or 7 or 12 will act up and you can see the frustration and/or embarrassment on usually the Mom who is attempting to "correct" their child in public and of course the child is just not comply-ing. I will walk by the Mom and quietly say that she has nothing to be embarrassed about and plenty to be Thankful for because I have an Autistic child whom I wish would do some of the things that their children are doing. I have to tell you I have never received a negative reception from any of the moms I have approached. I think they are relieved that someone has felt their stress--

Well that's a social situation and one that we can sometimes train our children adapt appropriate behaviors but what about more primary needs particularly those concerning health?grooming? or daily living skills?

Part of that observation is having a child with Autism is similar to having a an infant one that does not tell you when something hurts or feels good or when they are sick or hungry--it becomes a guessing game coupled with subtle nuances your child sends you.

I always try to see the strengths and the positives but I often wonder how a person who has never dealt with this situation would react if suddenly one of our children was dumped into their laps{I guess its the old thought about dying and who will take care of my child once I am gone and how well will they will treat my guy}

So here's some of the challenges : I have a kid who does not blow his nose-- its not for trying its because he has no clue how to make his nose blow out the snot--SORRY i have for the better part of 20 years tried to get him to understand the concept of blowing his nose but every time I place the Kleenex over his nose he blows air out of his mouth! I have tried believe me showing him how i do it having him hold the Kleenex HE JUST DOES NOT GET THE CONCEPT So I use a baby suction-- sure its not age appropriate but what can I do-- I refuse to let him roam around with his nose full. Then you have the quandary of what happens when he's not in you company ??? Are you going to ask or require those caring for your kid to suction him??I mean its a tough call.

OK next -- SPITTING when he is sick and he starts coughing phlegm how do you explain to your kid that he needs to rid his body of that awful stuff that he just coughed up??My guy freaks out about spitting and of course that meaning being sick too. He refuses until the body over rules him-- and usually there's a mess to clean up .

Drinking water-- this has become one of the most difficult and current issues. Dakota has a huge amount of OCD {Obsessive Compulsive Disorder}about eating and food rituals. There are specific places Dakota REQUIRES going on specific days but one of the most peculiar is his beverages-- He has one and one cup for Hot Tea NOTHING else can go in that cup including other hot items like cocoa--he has one specific glass for Ice Tea and he will ONLY drink Ice Tea from that glass -- he will yield to Ice Tea in a restaurant however he has been on a mortitorium going to restaurants for about 3 or 4 years--occasionally his father can get him in one and when we went on vacation he yielded a bit--Soda he will only drink if it is in the appropriate cup from the fast food place he has gone to that day--DON'T EVEN TRY to give him soda in a cup from the place the day before --its just will not work.He had a juice glass I wrote about previously and now he will not drink juice AT ALL! BUT water it is the biggest issue of all. he has one glass he will drink from at home but that glass cannot go to another location and be used. He will not drink out of a bottle of water and he will not drink from a water cooler--- At school the only thing he will drink is from a fountain and he has become entrenched in this ritual just about everywhere he goes. I have gotten to the point of watching for fountains NO MATTER where we go just to give him opportunities to drink water and keep hydrated.He has resorted to drinking water out of the spigot at his Dads as well as many places we have gone to stay at-- even occassionaly he will do it in his own home. I worry cuz I know this is a major health issue but so far I don't have any answers or strategies.

There are so many things could continue writing about but for now I will leave with these thoughts -- The one thing that continues to resonate is that you have to just keep plugging away and trying different things and PICK YOUR BATTLES .Present opportunities and hope that your child will accept it--if he/she doesn't just try again later.you cant change Autism you can only learn to live with it. Your child has it live with all the peculiar things going on in their heads all we can do is try to understand and be creative to offering alternatives. MOST IMPORTANTLY DO GIVE UP AND NEVER GIVE IN TO OTHERS OPINIONS--do what's right in your gut! That way you will have no regrets!