Trouble with Sleeping Post

Please excuse the incomplete blog on sleeping..having "electronic"difficulties ..will resume shortly...

Sleeping Challenges

Even as parents of typical children there are always challenges for the sleeping process...although for most it is a matter of establishing a routine, Sticking to it for a short time and VOILA...it's done..
recently there have been many posts on the Autism boards about how different our kids and how much more our kids AND parents suffer from sleep deprivation...

For anyone in the Autism community it is pretty common knowledge that sleep and our kids just do not "make a pair"...many go through the day like a BUZZ saw and still through 9,10, onwards to 2 or 3 in the morning either don't sleep or sleep in spurts by the time they finally crash they may only then sleep for 3 to 5 hours before getting up and doing it again....
Several other parent have reported that their children will be relatively manageable through out the day then when it comes time to sleep..it's like someone gave then a shot of espresso or adrenaline . There are a few who don't have too many problems with sleep but for the most part these are the RARE AND LUCKY ones....

I would be considered one of the RARE oneS as Dakota has pretty much slept for me BUT  NOT BECAUSE I am lucky. It was battle I aquiessed to at the very beginning.....I knew that if I was in this for the long haul sleep was going to become one requirement for all involved.

I myself have always been a great sleeper and perhaps that was luck(as I know many who suffer from all kinds of slept deprivation). From a very early age my mother gave me one gift ...to appreciate and covet sleep! She constantly reminded me that sleep was the one part of our day that you can escape from the rigors of life and have peace...That sleep was a way for the body to renew and heal itself .  That sleep was a gift and to enjoy it and embrace it....As a kid and young adult I tested those boundaries and even was one who could lay down for a couple of hours and get up and go full blast for another day... Birthing Dakota and going through the first couple of weeks with him in the hospital , then coming home to not only a new baby in the house but one who had many more needs  than the typical baby ..things changed and drastically...

First rule of thumb I sleep when he sleeps...because I never knew when I was going to have to be alert and present to deal with anything for a seizure to a trip to the hospital...
Secondly once he is asleep short of an atomic bomb NEVER and I mean NEVER WAKE HIM UP!(in fact right now it is 1030 am and he is sleeping quietly right next to me ;-).  )
I was lucky that we had a cohesive unit in Our house at the early part of this journey that the times I has to wake him up were RARE...and I believe that definitely contributed to his great sleeping patterns..with this rule came accomodations for instance the phone was take off the hook and everything went to voicemail till he woke , the door bell was disconnected, I made no appointments early in the morning or around his typical nap time(tricky but do- able)...I used either soft music in the room or a small fan/ heater for white noise(fan in summer...low heat in winter EVERYTIME) I came to understand that he likes having socks on his feet but no covers, that he flipped from the head to the foot of the bed even after he got out of the crib so just a flat sheet ...Just the little thing you pick up on ...I

Focus for this Year

Over the passed few years my posts have slowly been less not because I don't have more to say mostly because I find allotting time to sit down, log on and compose becomes more and more difficult. Also many times I think of a subject but to stop at that moment and write is always a challenge..then when I actually find the time then I loose the composition of what I want to say.

This year I have decided that I will focus the blog excerpts on deficits and difficulties that Dakota  experiences through out daily living?this isn't a a bitch session or whining ..quite the opposite! Itis designed to be a way to shine a light on those areas that need the most attention to those who may one day have to be the people who need to assist Dakota.....
Spurred on for the little encounter this past weekend at the party..(see previous post)

Physiologically Dakota appears to be able to do daily menial tasks that most typical people can..sleeping , eating, getting dressed, etc..unfortunately this is not the case. As the year progresses I will be writing observations on things that have to be done usually each and every day to make things AS NORMAL AS POSSIBLE!!!  

So the first subject I will focus on is Dakotas inabilty to express pain or describe it. It is simply the same as having an infant there are certain "tells" but for most of the time you have to be intuitive..is he hot? Is he poking his ear?is he chewing?is he unusually irritated?  

Now once you determine he is sick,then you have to figure the appropriate actions.just going to the doctor can be a huge pain in the ass..I know it is for almost every body but with him there are so many issues with the doctors office I can't begin to enumerate them. . .wait time,others who are potentially ill,behaviors, the examination, people coming in and out of the room, the poking and prodding (typical people can usually tolerate, not so much for our kids) and then if there is meds and you have you go to the pharmacy after wards ..well it's all a challenge to say the least ..

There are these issues...Dakota DOES NOT know how to blow his nose..I have tried for years to explain and show him how to do this and he just can't do it...It is still necessary to utilize an infant suction bulb to extra tall the nasty stuff from his nose when he's stuffed up(yuk).He also doesn't know how to spit,so getting him to expel phlegm  is impossible ..I even asked them at school to have his aid try to teach him to spit ..gross I know,but necessary!Additionally there his aversion to the toilet in general...I cannot get him to puke to spit or do ANYTHING  other than the traditional uses ..he is absolutely freaked out about using the toilet this way ..so when he is sick I have to put him in the shower to let him upchuck or use some type of bucket or towel..I know too much information!

The reason I am taking this path, is that parents and others who come to the blog need to know that whether their child has these same challenges or different ones they are not alone . Whatever their child's issues are it's ok to be frustrated and it ok to talk about it and seek out information for others.You never know, when you hear about someone in a  similar situation there may be a solution buried in the experience....

So for now this will be the focus this year. I hope it will certainly help others to realize some of the  simplest things we do on a daily basis ...we take for granted! Stay tuned.

It's a New Year

2014....man when I was growing up I remember many times trying to figure how old I would be at the turn of the century....I never thought passed that...and I certainly never pictured myself this old and with a man child that I would be caring for till the time comes for me me to pass.
This is my destiny and I accept it willingly. My son did not ask to be born and not to be born with Autism..
We attended a small party this passed weekend and it was the first time in I don't know how long that I was able to actually clean up and dress with make up and jewelry !!!what a treat...it was just one of those times that everything fell into place the right time, the right place and the right people which made it stress free for Dakota which I turn made it stress free for me!!!
When I got to the party I made the comment that I was so happy cuz I was able to do this and a voice comes popping out of the crowd ..why , ? and replied well I have two people to prepare and by the time I get to me I either don't want to take the time or I am out of time  or I am just ready to go so I skip on myself ...and this voice says oh mommy has do everything for her son ...he was teasing me but with a purpose ....and said look he may appear to have abilities but this kid doesn't do zippers or buttons or tie shoes for that matter ????these are all things that "people" in general don't think about ..

Don't want this to sound like a rant or whine just a statement about assumption...and judgement...I have really tried to prevent myself from judging others and the situations they are in our how they conduct themselves because simply we just don't know what is going on in their world...

Perhaps this is a little vague or not exactly the most pertinent to autism but for me it is a perfect time to remind all of us that although our path may be the same each journey has it's own challenges and it is the perfect time to start fresh with out perspective ....Happy New Year