My Heart Hurt Yesterday

Saturdays in general have been challenging for the past several years BUT  yesterday hurt. It wasn't that it was so much more intense than other Saturdays I think it was more the realization of helplessness I felt when I cant make his "hurting" go away.

Saturday's are transitional days for Dak --- because of his heavy reliance on schedules and routines especially with television along with other factors, He often times has behavioral issues. Sometimes it is sadness. Other times it can escalate all the way to physical aggression. As I have described many times before it is like the static in his head overwhelms his ability to think out his choices or options which in turn, CAN change him into a raving maniac{AND I say that with the greatest LOVE} It is as if he cannot calm the fire storm in his head so his body rebels. He can growl and shout. He can grab or even try to hit himself, on occasion he will try to grab my arm/hand and try to slap or hit himself. I have no fear because his intent is to rid the noise in his head and the simple fact that his motor skill level is not that of a trained fighter --its not like he can land a punch its more about the flailing of the body. I have said many times I probably could hurt him more than he could hurt me and I approach all inter action with that acute awareness. I must admit being a "typical thinker" it is extremely  difficult not to react to someone who is in a "physical mode" BUT he is my baby and I could never ...Well I just cant even think about it-- I can only say that no matter who it is; when someone attempts to come at you even with the purest motives or the knowledge that they have a mental impairement you have to have the mental fortitude to quash the innermost feelings of survival AND NOT RETALIATE. In Fact it has been my experience and has been what yields the best result most of the time is to walk away. Leave the room , allow whatever is happening to just "let the air out of the balloon" . I know many of you may not have that option because you need to monitor self injurious behavior BUT when its possible its worth a try-- {If they are in a safe environment}
When I feel Dak needs someones presence during these episodes I will simply sit on the edge of the bed or in the room and just not say anything--just be there and try to express in my eyes and body language that I am there and I will be there even as mad as he is...........

Yesterday was really no different than many other "Saturday Blow outs" what was different was my epiphamy that came later in the day--Dak was more sorrowful than usual yesterday and he even changed many of the things he usually "requires be accomplished  even on a Saturday " {which has happened before} BUT he was really displaying emotion the crying had purpose it was not just a product of the ranting, he seemed to be trying to tell me something and he even layed down and fell asleep requiring me to be right by his side . Even tho he was asleep and I mean deep breathing the minute I moved he stirred-- "Mommy where ya goin?" He needed me and I knew that the only thing I could do was just cave into the need.The rest of the day could go to hell -- My kid needed me and he needed me to set aside what ever the rest of the day had planned . I have no reservations about that -- because you see he did not ask to be born and he certainly did not ask to be born with Autism or any other kind of disorder so the least I can do for him is be the best Mom I know how . To hell with the rest of the world.

OK so here's the crux of the title-- My Heart Hurt Yesterday, after the whole thing was over and things resumed to what we call "normal" in our home these thoughts flowed over me like a soft waterfall. I FEEL that PERHAPS the Saturday thing is more about separation; not a break in routine--- and I may be totally wrong but that's what came to me last night. Dak often does something with his Dad on Saturday and although I know he looks forward to that activity I wonder if he is experiencing a fear not a change. In retrospect the saddness was deeply emotional and it was fearful . Although he can express himself his words are limited to HIS dialogue{ he talks about what he wants to talk about}  . When I attempted to ask him what was bothering him or why he was so sorrowful he retreated into his "communication shell" . I guess what this whole article is about was how emotional it made me because I could not resolve his sorrow.
I always want him to feel safe with me and to know I will always protect him as fiercely as a Mother bear.  My heart hurt yesterday because my son could not tell me what made him so sad. I will go on observing and assessing to do the best job I can with the hope that someday he will break from his shell and tell me how I can make LIFE better for him.

Daks Open Door on Facebook

I have now developed a page on Facebook under the same name
Daks Open Door-- this is just to try to spread more awareness and find more people who can help me as much as I want to help others -- In the future I will be X"cross" posting some of my little thoughts--Please feel free to add any input you have--

The first 6 or 7 weeks of 2012 have been lets say a challenge! One thing that keeps going around in my head is that those of you who do visit this page will always want support, praise and acknowledgement. I know If you live with Autism your life is not simple--- There is no formula! The one thing that has always remained true to me is "Go with Your Gut". Disreguard other peoples judgement on your life and your families life and do what is right for you. No One; even others who live with Autism do not know the particulars of your day to day lliving. It is imparative that you find the joy and freedom of what is comfortable for you, your child and the rest of your family!

OCD---

Lots of people have different ideas about what OCD is-- Obsessive Compulsive Disorder--
In My Humble Opinion I believe this is quite common because it manifests in individuals in different ways-- Many have repetitive behaviors others are "hard wired" to a routine or schedule- - - -  I got the chance one time to have a thoughtful conversation with and otherwise "typical" person who was diagnosed with OCD--   
We had been discussing a little boy who was absolutely insistent about going down a slide 3 TIMES in the park where his brother played soccer EVERY TIME. Rain or snow noon or midnight this kid would not get in the van unless he was allowed to slide--The parents were having a big problem with it mainly because they did not understand the behavior but also because there was concern over health and well being by factors like temperature or appropriate lighting etc...  the person I was talking to was almost shocked at the parents behavior because she totally understood the actions of this little boy . She described  like this; In this little ones head it is the same as a superstition. for this boy if he did not slide down the slide 3 times something bad would happen to him or his family. She was so matter a fat about it and explained that barring "self injurious" behavior  it was bordering on cruel for the parents not to indulge him.

I understand the need to guide your children and make decisions and choices for their well being and sometimes  to try to shift away from this type of behavior. Our kids need to "melt" into the existing world where most people have little or no tolerance for anyone who is "different"  however everyone of us is unique . There comes a point to make a decision whether we will just let this OCD prevail or try to quash it.

My personal opinion is if it is a benign behavior like sliding down a slide 3 times -0- whats the problem -- if it is invasive of other peoples space or it can be harmful then you need to re-assess. There are medications and as well as therapies that can help and sometimes the behavior will run its course --For our situation I have found that if I indulge Dak his one "obsession" at the onset of the day that the rest of the day is much easier-and sometimes I can him to do things he wouldn't ordinarily do -- Its a great pay off !   

Not A New Years Resolution!!!!!

Over the course of the first weeks of this year I have had a couple of "discussions" via email with Moms who have had specific issues which I believe should be posted here. I am quite sure if you go back among the already existing  posts you may find similar subjects but I am convinced that these subjects bare repeating...... 

Both of these are subjects that I would not consider to be "resolutions" but more a promise to yourself to not get sucked up into other peoples opinions and observations about your child and his good or negative behavior.

The first is IEP's and the IEP team and the way you pour your heart into these events and come out drained , emotional and for the most part feeling defeated-- If I could advise any parent only one thing it would be this;

I went thru so many years of IEP's and I swear it took more of a toll on me than caring for my son--One thing that kept me going was I knew I was his voice and whether they liked it or not . I was a part of the IEP team and my input weighed as heavily if not more heavily than all the others combined--


Stand up for all you believe in and do not give in--BUT remember that its only a small part of your childs  life.

Come 22 and he exits there is still a lot of living left . The transition services--SUCK There is nothing out there right now-----These kids have a typical life expectancy and they will be in the community far longer than the time that they spend in school
I guess what I am saying is "perspective' Don't let those school numb heads get to you I am sorry for all the tears and stress I put myself thru only to realize that all I fought for was gone once school was no longer a part of his life.

If I had the opportunity to give additional information  on my experience 
It would be this

We have to remember that these kids disability is their behavior  When someone, anyone who is a part of the team that is involved with your child  reacts in a way that does not " sit right " with you -- DO NOT  dismiss it as you being to sensitive  "GO WITH YOUR GUT"      If your child develops behavior in a new setting don't always blame the Autism --look at the people and environment SOMETHING has changed--I certainly am not saying that a person or persons are bad or mistreating what I am saying is there is potential for a "mis-match"  Not every person can get along or like every other person and sometimes that can make all the difference in a therapy or a program or a class. Do not be apprehensive to change the sooner you do it the sooner you will get {hopefully} more positive behavior and results not to mention your child will more at ease...   

So for now these are things that I want to leave you with--I am not a resolution type of a girl but I think realizing all the mistakes I made over the years -- Trying to give small purview to my experience may help someone else> For Now no resolutions just promises ---to yourself to keep a keen eye and a peaceful frame of mind when you are helping your Autistic Individual.  
 

New Year 2012

Happy Year to everyone who passes through my "thoughts"  Of course the new year comes with another plan to be more fastidious about posting more often! It seems as though I have many thoughts, opinions or observations that I want to write about the struggle always seems to be finding the time to sit down to post. There is always a conscientious effort to blog when it doesn't take away from Dakotas time however  I do loose some of my thoughts when I put them off --I guess just another sign of old age creeping up on me!

Last year was rather inert-- although I did manage to get Dakota Community Integration thru a Fair Hearing with IRC and an Administrative Hearing Judge. When the AB trailer 9 went into affect funding was cut drastically and community integration went down in flames for most clients-- however there are "exceptions" that allow the Regional Centers to fund this program but unfortunately it does not come easily.  So that was one of the highlights of the year. We were able to attend a few television tapings including American Idol and Americas Got Talent and then went thru the regular  events of the year -- only to top off the last week of the year but volunteering to help decorate the Rose Parade Floats.

One message I cannot repeat enough is the importance of getting your " Specially Challenged Individuals out in the typical community as much as humanly possible. I truly believe that although these kids need the safe haven of spending some of their time and days with kids that have challenges by the same token they absolutely need the typical Community experience ON A REGULAR BASIS. Not only is it good give them the exposure and ability to view and model from typical individuals BUT we need to expose the community to Autism and desensitize them from shunning or kids and disabilities in general. 

We have become such a judgemental society -- no matter what you see, most make a decision almost immediately what their opinion is of either a person or a situation. We need to educate people that it is not necessarily the first impression that dictates what is to be.   The ability to be compassionate , empathetic and accepting is slowly disappearing from our society-- We need to promote bringing it back. So many live with the opinion that they have to have what the next guy has, either clothes cars, homes, possessions, personality etc. If someone is walking down the Mall and they don't have the coolest clothes or phone or whatever the immediate reaction is they are a dork or don't deserve to be there--we need to stop it  and stop now-- The next time you find yourself drawing a conclusion --please just stop and think for a minute and put yourself in that persons place before you draw judgement--

This challenge is for our kids of course but it is for society in general it is a mantra we should embrace for the New Year and the all the years to follow. We can make this a better place and it starts with people opening their mind to possibilities.

The "Narrative page" on an IEP

Recently had a discussion with a mom about services provided on an IEP and her discovery that the district mysteriously moved the directive from Direct Services to Accommodations on the IEP. Of course we would all like to give whoever the person is enough credit that this was an honest mistake or not intentional; but as we all know it doesn't seem that anything the district does is an honest mistake, it is usually calculated and done with intent.

Regardless , I was explaining that there is and always has been a Narrative Page in every IEP and this is where your "gold" is. Meaning that you have the ability to put any special instructions "free form" to aid your child and his education. This particular Mom didn't recall seeing a Narrative Page and we both discussed the IEP process and how the electronic recording of an IEP has kinda "masked" this option{the Narrative Page}.

I rechecked with CASE Special Education Rights and Responsibilities http://www.caseadvocacy.org/handbook.html and there are several references to the Narrative Page especially in Chapter 5 which is for Related Services---

Basically the Narrative page is the "catch all" for any thing and everything YOU want to include in the IEP. Use it and make sure they {the District} knows you know about it and what you expect from it--- It can be one of the strongest tools you have for your child. It can incorporate the fine tuning you need in the classroom and the campus.

Remember the "Narrative Page" it can be your best friend and strongest ally in the IEP!