DAKS OPEN DOOR-JOURNAL

I am not sure what happened or why I experienced this but last night I  had a burst of overwhelming love for Dakota. Perhaps it was Mothers Day or because he had been gone during the day or maybe because my head and heart were in a perfect place --- i cant really explain it ---all I know is that My already intense love for my son was overwhelming

It was one of the most peaceful and perfect feelings I have ever had and it even brought tears to my eyes---

I only hope that every Mom  has a moment like that because it was the most awesome feeling I have ever had!

To all who read I hope you all had a great Mothers Day

I know I did!

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What is Normal???Is there such a thing????I dont know but many I know in the "Autistic Community" have always joked about this quandry.

Today we start integrating the regualr shoe. So I hope this will be the end of a nightmare that start over 3 years ago.No more therapy and no more appointments  YIPEEEEEEE. 

Of course I havent been able to do things like even sit on this computer and write in this journal as my nursing duties pretty much took up most of the day.If I was "nursing " I was placating Dakota's desire to just have someone around--again I guess I should be thrilled I have a kid that wants to be around his MOM! Then there is always the thought that summer is coming and once school is out theres a whole set of new routines in place--- OH WHO CAN KEEP UP WITH ALL OF THIS????

I guess my point to all of this is I have great hope that I will be able to get more things accomplished including my rant. I will say that I did discover a big life lesson after having Dakota that the old wives tale about "the housework will wait but the kids grow up" ; So dont stress too much about the dishes cuz they will still be there long after the kids are gone  IS TRUE

And having a child, a teen, or young adult with Autism makes the point that you HAVE TO sieze the moment and take every opportunity because you never know when that will be a learning experience for your child----It has paid off in this house and I hope it will pay off for others . I continue to see Dakota growing  babysteps and maybe he will always need someone here with him but as long as I see progress I will continue to leave the dishes in the sink !

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Hello

for anyone who reads this journal just wanted to say I will be back this week -- Dakota recently had what I hope is his last surgery and things have been challenging to say the least

It appears that the surgey will correct his foot and hopefully we will get back to normal --whatever that is!!!!!

Thank you for being interested and if you have just started reading my "Rant" please feel free to go back into the archives for a sample of what I write about and I will have new excerpts shortly!!!!

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Another subject came up on the support group about how DEET is showing up in our water and I took the opportunity to post about using BOUNCE

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I was writing on a web support group about a couple of behaviors that Dakota has or had and I responded with what I did to "do Battle " to conquer the bad habit  Here It Is:

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Thought that this subject would provide information that some caregivers might use!

Dakota has been caught up in a series of surgeries since he broke his leg 3 years ago. Needless to say it has been very frustrating and exhausting although the large part of the surgery has been rather minor. This time it is going to be a little more extensive and he would be required to take a blood test.

 That presents a whole different set of "issues ". Dakota had been very good when he was younger about taking blood tests . He took me that required his blood to be checked on a regular basis and we had established a relationship with one of the flobotomist so it was pretty comfortable and easy to have a blood test. Of course over time and not having to take the tests he became resistant to the lab work and by the time that the doctor told us that we would need a blood test this time around --I thought to myself this is "Mission Impossible".I mulled it over in my head and thought of different scenarios that might work and the best I could think of would to be convince the doctor to have the flobotomist to come to the exam room and try to get it there in a controlled atomoshere.Of course I was met with resistance as well all know that medical professionals are aware of Autism and sat they understand BUT when it comes to practical application or trying to make ALL of our lives easier THEY HAVE NO CLUE!

So I decided this was my battle to conquer and this is how I did it: It took about 6 weeks but I probably could have gotten it done a little sooner if I would have been more pro-active but the end result was success--THAT IS ALL THAT MATTERS. I took Dakota to the clinic and walked back to the lab . It happened to be a rather quiet time in between the regular day appointments and the urgent care clients that come in after hours. I introduced my self and Dakota and explained <SPAN id=sp-14 title=" wt hat, what, that, wheat, that'd, thatch, thwart" style="BACKGROUND: url(undefinedimages/bg_spellingErr.gif) yellow repeat-x left bottom; PADDING-BOTTOM: 2px; COLOR: #000" _backupTitle="null"> we just came to visit and see the lab and those that work their. We talked for a few minutes and I told them about Dakotas situation and his familiarity with the flobotomist that used to draw his blood and the "issues " he was having about doing it now. Then we said good bye and went about our merry way. We repeated this about 3 times and by the time we sondered in and said hello to the flobotomist  on the 3 time  she looked at Dakota and said "Well go over there and register with the lady and lets get this done!" Guess What? He did exactly what she asked! She looked at me and I looked at her we kinda giggled  and before he barely sat down she used the "piggy back" thing and B I N G O  he was done!

No Harm No Foul--- what a great accomplishment and with  no resistance--It took a little time and it wasn't just one trip but IT WORKED . That's what important--Another Dragon Slayed ; another battle won! when we get these curve balls thrown at us we just have to hang in there and think it out because the solution will present itself! 

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Opportunity-- its a positive word and probably not one that those of us travel down the road of Autism think about much. Rather the thoughts are more about the lack of opportunities for foer children plague us at every corner and what we can do as parents caregivers or advocates to reverse this treand. As our children grow older that become more noticeable as "different" and no longer "blend-in" as they did when they were small children.

Every move you make you attempt to get optimum useage of opportunities whether it is the classroom or in other social settings---We practically break our backs to beg cheat lie and steal to convince others that our kids have a right and deserve to experience things just like "typical " children . Many are receptive to our lament but sometimes it takes an Act of Congress to achieve sucess.

All of that being said another conclusion I have come to is that we have to also realize that despite the Autism our kids are still people; individuals human beings that have their own needs wants and desires.Knowing I am probably not the only one who has recognized this ;the situation poses a whole new situation,one that is very difficult for me and I am sure probably for most parents and others who care for our children. What I find myself doing is trying to get my son involved in things that  I participated in High School--- different clubs ,going to ball games. attending pep rallies and concerts, being involved in student body or special dances----- I want Dakota to have the "High School " experience  but then I have to sytop and say what is that??? Not everybody was like me when I went to school  there were all kinds of kids that had different interests and were involved at different levels AND I HAVE A HARD TIME REMEMBERING THAT!

I have to take a step back and let HIM do the choosing. Once again just because hes Autistic doesnt mean that he cant think for himself or express a desire to do or not do something. I have felt a huge amount of frustration in the past when I have "preped"  him for an event and the time comes to go or do and all of a sudden he "stonewalls"me and then I get pissed and NOBOBY  is happy. It has taken me a couple of years and a few encounters to to come to the conclusion that all I can do is present an OPPORTUNITY to Dakota and it is up to him whether he decided to take it !

It seems like a simple thing but I can tell you that many of us have gone thru numerous situations trying to get our children to do things that they simply do not want to do ---OFTEN TIMES the best solution is just to let them express their choice and believe me sometimes it is not verbally but they can always tell you when they do not want to do something!   

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This topic has been swirling around in my head for the past few weeks and I have just not sat down and added much to this journal-- I apologize to any who read it as I enter exerpts--I guess its like writers block or lack of time to compose-- whatever the excuse I do feel guilty--- There have been many things happening in the house and I do need to get "cracking " on the posting--

For Now the subject is Chocolate Pudding----or Tapioca Pudding or Sherbet or applesauce --preferably cinnamon or strawberry or even a wedge fry sometimes spaghetti .lasagne or other italian foods-- These are all candidates for hiding medications

Thats right I have a a grown boy who still does not understand the concept of swallowing pills . There have been some "break-throughs' in making some medications in a liquid form but believe me they are not the most condusive to someone who has an opinion of what taste good---They have even made several over the counter medications like a liquid Tylenol but I ask have you tasted that stuff--- I am sorry but whats that saying???"They can send a man to the Moon but they cant make medicine taste good enuf to get a kid to take it?" What the heel is up with that?? Isnt life with these kids complicated enuf with out having to figure out how you are going to get then to take medication SUCESSFULLY?

Well Momma has become a pretty good mixologist----rather than take the liquid crap that half is spilled or avoided or I have to chase him around the house and threaten him within a inch of his life{I am exaggerating but any how} Cut up those pills into 4 pieces or crush them or whatever and find something your child eats willingly and BURY IT!

Be creative and above all do it covertly so they dont have a clue even a cookie that has large choclate chips in works -- if they detect a n odd taste or texture ignore it dont acknowldge it and offer tham anoth bite hopefully that doesnot have the pill in it or give them some water or milk or beverage that will wash it down before they realize they have been medicated.

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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.

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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.   

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