The choice to Medicate

The choice to use medication is a hot topic in general much less for children with Autism. A couple of the major complications we face as caregivers is that many if not most of our children actually have more than one diagnosis. Some diagnosis are confirmed or suspected by a professional. Other diagnosis are just years of observing certain behaviors by a parent or caregiver who KNOWS ! Another complication is many of our children are non verbal, selectively verbal and /or have high tolerances for pain or feeling:so when we finally medicate we don't know if the medication works, if they need the medication or if they are experiencing side effects. Its difficult decision in the world we live in with the many options that exists out there to know what is the right thing to do????

I think again it comes back to GO WITH YOUR GUT and PICK YOUR BATTLES! Sometimes you just know when something is right or wrong and you have to trust yourself. Trust yourself to be wise enough to know when something feels right or when its all wrong.You also have to decide whether you want to fight the battle. Often times the behavior or situation will pass and you can expend a huge amount of energy fighting something that exhausts you and in the end you did not accomplish much.

There is no right or wrong there is only what's right for your family and your child .We live in a world where we are obsessed with what other people think about us and our decisions--You have to get passed that! I often feel like an outcast or a rebel because people think I am crazy for the way I do things . I must admit that that is one thing that age does for you-- It frees you from the shackles of public opinion. Perhaps having a child with Autism also does the same thing.

As one of the Moms on one of the support groups I belong to recently said is 'if there was only one way to go and one solution to autism all of our kids would be recoveredand everyone would take the solution behind the Magic Door #1. We work hard for our children and there is no one easy answer.'

That why you make the choice and pray that it will make life better for your child, for you and for your family.

Proud Momma

I am so proud of my kid! He has had residual trouble with his leg and foot since he broke it over 2 years ago and we have one more "procedure" to attempt a final remedy of what I hope will fix or at least make better his gait and walking ability this is a little more complicated and extensive than the other things we have tried up to this point. That being said he needed to have blood work done and it has been quite a long time since we have had to make a trip to the Lab. I was very nervous because now that he is a full grown kid he isn't someone I can flop on my lap and hold on tight and just get the job done --- I needed co-operation and willingness to get the job completed.

Well; we started a dialogue about how we had to get the blood work done and how he used to go to the lab years ago on a rather regular schedule{as he was on meds that required monitoring} and how we could not get this final procedure done until he went to the Lab. He was a bit reluctant and talked about his visit to the ER and hospital when he broke his leg and how it was not the most pleasant experience and how "he wanted to get out of there!" And that the blood work was already done because they did it the last time he was in the hospital--- HE'S NO DUMMY! I explained that was long ago and it was necessary to get a new test. He wasn't exactly ready to hear that-- so the next step we took was merely going to the facility and walking in and talking with the flabotomist{sp} -I made it a point to go towards evening when there were less people and the facility had just started doing clinic work and is now open til 9pm so the Lab was much quieter after 5.We introduced ourselves to Shawnice and told her our story about our prior routine with his favorite lady that ALWAYS drew his blood before and how we were just getting used to the lab at this point and we would visit again soon.

A couple of weeks went by and he was still resisting so I had to refill a 'script so I took that opportunity to "cruise" the lab again with Dakota in tow. He was still resistant but the same lady was there and she greeted him and then we said good bye.

Yesterday it seemed as if the stars were aligned and everything was in its proper place --at my suggestion I told Dak I had to go refill another prescription and maybe we should get that test---He walked into the facility walked right to the lab and there she was the same lady and she told him "Ok I am here now go get checked in and come see me"-- He walked to the desk--checked in-- walked straight over to the lab --sat down -- put his arm out --started to renig a bit when she got out the tube but by the time I hugged him and told him it was ok she said "Ok just a small stick you probably wont feel it" -- I looked down and she was done!!!!

NO screaming, no crying, no fighting, no nothing---MAN WAS I BEAMING! I think I was dreading it more than he was. As a mother I think its that way a lot of the time but I have to admit with kids like this you just never know what to expect and when you get this type of GREAT behavior You cant help but be proud and know that maybe the little extra work you put into it paid off!

Inventory#2 continued

I actually veered off the subject I intended on the last post so for this one it is going to be more Direct and focused.

Dakota's most frustrating and challenging deficit is the lack of Self-motivational Skills. This child absolutely needs someone around 24/7 to keep him motivated to do anything. He needs visual ques and verbal prompting on everything from taking his shoes off before he hits the bed to being reminded that he needs to go in the bathroom and relieve his bladder---He has motor planning and fine motor issues and he will not engage in doing papers or homework uless you sit down right next to him and often times he requires "hand over" prompting to JUST pick up a pencil much less use it>He will not eat anything that is not put in front of him as a meal or presented to him as a snack --we have one shelf designated for him to utilize on his own and for over 2 to 3 years he has yet to take one thing off that shelf. he will not complete a trip to the bathroom without my assistance -- I have developed an extensive dialog about him taking care of himself and how important it is for him to have practice and the more he tries the better he will get at it but it just doesn't seem to make sense to him.He will answer a phone but then refuse to speak to the person on the other end-- sometimes you can put the phone on speaker and he will perhaps mumble one or two words but for the most part he only wants to answer it not talk on it! Oh the list goes on-----I have tried to get him to walk for exercise -- it took him to the track and he walked four laps and said I m done so I figured well that's a mile we will come back tomorrow or the next day --HA HAHe refused to go saying he already did that---

Other things that are equally challenging are things like the fact that he does not swallow pills he chews them and once he get a taste that's it then you have to figure how your will get him to take it the second day--- He cannot blow his nose he has absolutely no concept how to make his nose blow out the mucus-- he fakes a blow by putting the Kleenex up to his nose then blowing out his mouth. He will not shower himself-- I think its because he cannot stand the feel of the shampoo and soap a tactile issue and he will help with the teeth but I recently added mouthwash as a pre-cursor so i have to assist with that task as well--although I learned many years ago that it can all be done in the shower at one time so the shower becomes a one stop shop---

His OCD has over taken the Autism to a certain extent--- the routine and schedule of performing certain tasks are much more important that stimmimg or repetitious behavior--- that's another one to drive you to the funny farm!

He will not go to bed on his own either--another item I feel like I have been working on forever-- I cannot say ok Dakota go get your PJ's on and get in bed --as long as I am up he is up and he will not lay down in bed without someone laying down with him--- i think he needs to know that the day has ended which means everybody down not just him.

Well I think for now that is enough update but will continue to expound on other issues as they come to mind

Inventory of skills or Lack thereof

It occurred to me; after writing about the notebook that I had worked on so many years ago; there were many items that Dakota has either made significant progress on or None at all. So in an effort to keep things as current, as well as shed light to other parents about issues they may be dealing with along side of me, I decided to add this entry.

Birthing and raising a "typical child" there are all kinds of measurements to gage your child's progress. When you have an Autistic child the truth is no one knows SHIT.Sorry to offend anyone who reads this but it is so true. Each child has such extreme highs and lows in performance half the time you aren't sure if you had a genius or dare I say an idiot--but to be a compassionate loving paren't and person who respects others I prefer to say severely challenged child. AND everyone is the expert they try to tell you "oh they should be doing that by now" or "haven't they done this yet" or "my kid did that a year ago" but the ones who really get me are the "professionals who work with our kids everyday as their job. They are theeeeee most idiotic of all. Funny thing is that you are trying to do the responsible thing and put your trust into someone who has made it their profession to know about our children-- these people have gone to school for years and have worked tirelessly most of them for years and most NOT all don't have a fricking clue what our child can or cannot do-- I mean no disrespect I am just tired of people expecting me to respect their opinions,listen and act on their advice when they cant even tell me anything about my child without opening up a file on them.

As a paren't who has 21 years under her belt I can say one thing that is "It is my opinion and Observation that the one thing about these kids that makes them so interesting and different from other disabilities is that every one of them cannot be measured by how a typical child performs and certainly not by another that has the same diagnosis" You can line 10 Autistic kids up in a row and not one will have the same issues. One can tie his shoes, answer the phone, mow the lawn and the next cant do any of those but he can do 10 things that the first kid cannot do--- It's quite interesting and perplexing. The other thing I can say is "It is incredibly important that you know your child strengths and develop all learning around those strengths!"A basic example would be when Dakota was first learning the "cost" or concept of money he had no clue. All of his toys required batteries so rather than use money for him to learn; if he might want to buy a toy> I utilized batteries to equate the cost of an item. Four batteries cost approx $2.50 and if the item was $10.00 it was equal to giving up 16 batteries that powered 4 toys if he wanted to get another toy---[clear as mud--right]

The key is know you child --- inventory his strengths and weaknesses and always use that to teach him---

Journal of many Purposes

Another thought that passed through my head in the last few hours --which I decided was worth posting was this: My initial purpose was to reach out to others caring and living with Autism. To help them perhaps see their child in a different way or to provoke thought about the child's behavior in a different way . As the journal grows its needs and purposes grow--

I believe every caregiver has this thought :What happens once I am not around anymore to care for my "baby"-- Who will do this , How do I know they will take care of him the right way, how will they know about his personality or his schedule or his idiosyncrasies, and most importantly will they take care of my baby the way he deserves to be taken care of without abuse or neglect????

Those are all BIG questions -- Its hard to admit that your own mind goes to some very dark places and you are reluctant to even admit you think "those thoughts"

An exercise that was an assignment when we first started Cal State San Bernardino's UCDD { University Center for Developmental Disabilities} was to collect and notates life for your child as if tomorrow you were NOT there-----personal info like address, siblings and people who knew your child;medical info doctors names and addresses medications and dosage perhaps the manner in which you administer the meds like if you need to put it in applesauce to get them to take the 'script: routines-- bed and sleeping habits. school and extra curricular activities,eating and eating rituals,grooming and grooming strategies ; and any other info you think that someone would or cold need to help your child get on with his day IF YOU WERE NOT THERE---An Operational Manual if you will.

I made a notebook way before computers were around that was quite extensive and impressive to most who saw it -- of course it was a bit over the top but it even had a section about Special Details -- like the fact that Dakota still to this day cannot swallow a pill and chews the ones he is given and he has NO concept how to blow is nose-- strange as it may seem SOMEONE may need to know that if I am not around.

Thinking about this journal and the volumous notebook I made so many years ago it dawned on me that I could actually update things that have changed or not, by utilizing this journal--So that the people entrust to his care know that the book is there from many years gone by but they have the journal to refer to to see if certain things they need to address can be answered even after I am gone---

The simple fact is; more likely than not our kids will hopefully outlive us and have great lives even once we are gone and truthfully many have said to me that when that time comes it wont matter to me because I will no longer be on this "plane" with him---Some how I know in my heart that I will always encircle and encase him with my love and guidance and this journal is one more way to leave little clues How To Take Care of My Baby.

as a post script: although most of us are lucky enough to have the use of a computer you can also document with something as simple as paper and pen and a notebook or folder to hold it all together-- whatever the method consider the challenge!

Shoes

I have been writing now for about 2 years and although I should add more entries on a regular basis I find all kinds of road blocks and excuses-- For that I am sorry--I am also sorry that the journal has reached a place where it is time consuming to check if I have written about a certain subject so I will apologize be for hand if I repeat a subject I have already reflected on!

Today the topic that came to mind was shoes-- now there has been very little with my son on the topic of shoes over the years however now more than ever it has become a strategic part of the preparation to leave the house. What I mean by that is that for about the last 2 or 3 years; It has become abundantly clear that the shoes DO NOT go on the feet until the very last second before leaving the house--

Chock it off to Anxiety or whatever you want but to Dakota when the shoes go on, the front door opens.Its time to go! As a caregiver having to dress and groom 2 people when preparing for an outing timing is everything and as I get on in years that mid-life crisis rears its ugly head and adds an extra challenge to the mix. What I have discovered is that I cannot prepare myself first because by the time I finish chasing him around the house with a shower and a shave all the necessary grooming items and then the clothes I am a disaster and have to start all over anyway

So I consider myself rather cleaver in that I split the difference by doing him half way then me--- dress him BUT NEVER apply the shoes or hes out the door pacing either by the car or up and down the side walk waiting as patiently as he can for me to finish dressing and eagerly waiting for that moment when I walk out with cell phone and keys in hand.

Not sure if anyone has experienced quite the same thing == I just found it to be another testiment to the peculiar workings of an Autistic mind. That the Anxiety driven part of our kids have ques that tell them when to go and when to stay and it translates into very strange things that the "typical" person may not recognize.

The one thing I want more than anything; is this journal to help suggestthat what we see or struggle with in our kids may have reason that we cannot see and to just take a moment or an extra bit of time to analyze what is happening and why. Perhaps you may never really know the cause but you can always try to adapt from what you see or feel in your gut. It just may eliminate extra stress or you and moreimportantly your child!

So in a matter of speaking;

Dont put on the shoes till your ready to walk through the door!

Yesterday ws a good Day

You have to measure success in a different way when you have a child with Autism--

Its almost like the Mantra "One Day at a Time" but more like one hour at a time. If your child has one moment of clarity or completion of task or compliant behavior that is enough to break out the champagne and "close the books" for the day! When you have gone over and over a request or practiced going somewhere and all of a sudden it happens I cannot explain the feeling of joy that over comes you--- At least it does me. Down this path we travel never knowing when there will be another "hair-pin" turn and you weary,very weary. Sometimes you just don't believe that there is another human being on the planet that understands what you are going through -- Then you have "that " moment and it doesn't matter because again no one can experience the "high" from the accomplishment ------ It is a wild ride!

Yesterday was one of those days and it was a simple task for most but one I have avoided for quite some time --- a basic trip to WalMart usually something I choose to do while Dakota is not with me which is rare but I manage--- I started early in the day suggesting that we needed to go to WalMart and it would be a relatively quick trip. As the day went on I re-iterated that we would go and pick up specific items and perhaps there may be a few we would look at --- but I reassured him that we would not be in there a long time. As we approached the store I kinda went over what we were going in for and that there may be a few items I would add once we were in the store> I also told him that it was important that if he felt the need to "get out" he needed to let me know and we would leave.{I have discovered that the Anxiety {the fear of what's to come} is the buggest obstacle to most tasks-- if the child has some idea of whats coming and you describe what to expect it will usually help the outcome of the task.} I told him it was important to know that even once he needed to leave that he had to give me time to check out so as soon as he felt te urge to go he must let me know.

With that we went in the store and what a great experience! I could not have asked for a better trip-- He interacted with his grandma as she tried on some boots actually laughing and enjoying the fact that she was having trouble getting them on. We even "back tracked" {something I have learned that can be a disaster with these kids} thru a part of the store we had already gone in and he was very complacent. He did express a bit of "man-ly" frustration of being in the Ladies department so we pressed on ending in the Sundries and Garden area where he absolutely stepped up and even helped me load some rather large bags of potting soil on the the cart-- he gracefully walked thru the store, picked out the cashier helped unload the items to be checked grabbed the receipt{a must for him} even handed it to the attendant at the door for a check and pushed the cart to the car---

WHO COULD ASK FOR ANYTHING MORE??? it was a dream it was a breeze and all I can say is the whole trip home I told him how much I appreciated his help and cooperation---For the general public they just don't understand A trip to a store should be a basic function of life --put the kids in the car and go for it BUT I TELL YOU this was a task that we had attempted many times and just not had a good result and to have a trip like this was enough to win an award .