"Flashback"

Speaking of behaviors--- we had an interesting one yesterday;
Dakota arose to a bit of anxiety as he knew he had plans with a few "mentors" to do some exercise later in the day. He was so anxious that he wanted to get dressed and go several hours before these people were going to be ready for him so of course I tried to "fill " the time and placate until the afternoon.

We headed over to the fast food choice of the day and when we entered the parking lot; I had challenged him to get out and go in and eat rather than drive thru and take it back to the house--at first he appeared open to the idea but when the car hit the parking slot he said "NO NO" -- I said "OK you want to take it home!" I started to pull into the drive thru and from no where his eyes filled with tears and he started shouting about cutting all his hair off {which was left over from the night before--he continues to twist his hair and deface his hairline and MY frustration is growing to the point that I am resolved ALMOST to shaving his head and starting from scratch with the hope that it will stop that behavior{again be careful what you wish for}}. 

So I put the car in reverse and backed out, found a parking space which the whole lot was basically empty and shut down the car to have a discussion with him about this issue. Within 2 minutes it was escalated to cuss words and shouting and his statement"Thats it Im getting out of this damn car!" 
Out he goes--slamming the door behind him. I took a stand, with the environment being relatively safe to allow him to storm off. The lot was wide open and we were quite a ways from the street which was a side street with less traffic than  main drag. He walked about 30 to 40 yards away and stopped by a cement cylinder that housed a tall light. I did not move and I kept the motor running so I could "jam" if I needed to get to him quickly.
About 10 or 15 minutes passed and I could tell he was attempting to find his way back--the anger had passed. What I observed was rather interesting and perplexing. He stood there and rocked back and forth-- picked up his feet and tried to step towards the car but it was as if he was in a clear plastic box that he couldnt get out of--- Pretty soon he starts calling with his hand to his mouth "where are you??" I was in plain view with no other cars between us-- he could see me, he could hear me but he could not move from that lamppost. I swore I wasnt going to go after him. I wasnt going to move but as I watched him struggle I knew his body WAS NOT  going to allow him to walk back to the car. I took incrimental steps by just getting out of the car first and encouraging him to walk back the same way he went-- that didnt work--- He started to step on the lines for the cars to park between and he could not get himself to move beyond those lines---Finally I walked across the isle and encouraged him to come, again and he could not do it-after 3 or 4 sessions of trying I got within 10 to 15 feet of him, held my hands out and said "Come on you can do it". It took everything he had to step toward me. As soon as he had my hands he held on for dear life.The first words out of his mouth were "I was having a "flashback" Momma from when I broke my leg" "I was afraid to move"   

I am not sure what to think of this whole episode. heres where I am at: first and foremost any kid that can express that he was having a "flashback" is certainly not retarded as the Inland Regional Center would like to label someone like Dakota.  
Secondly as much as Chaffey Joint Union High School District would like to think that it was "just a broken Leg" and "things like this happen all the time"  it scarred my kid far more than they will ever imagine and it is sad that he still has to struggle with this kind of trauma 5 years later!  

Slight Improvement

Ok I guess its like Murphy's Law 2 steps forward -- 1 step back????
The past 2 or 3 days have been a bit better. I have made an effort to get Dakota out and a bit more active.Not only to keep his mind busier but also to wear off a little energy which I hope will help his "coping mechanism".

There have been a few quick little tantrums although I must admit he had a pretty good blow out tonight. It was short lived however it was intense.My biggest fear and hardest challenge is to not react as a typical person would by decking him -- which I know would happen if he was in the "real world" and he acted like that to someone who did not know him. Again I maintain that his behavior has no intent to actiually hurt someone but by his shear size he has the potential. 

I am begining to be convinced that these behaviors are "seizure-like" in nature.They come and go within minutes, they have a very severe intensity but as they pass Dakota is almost "post-dictal" {exhausted and lethargic} aftward and recently I have also noticed that his body and particularly his head gets very hot. I have heard of people who spontaneously combust and I am seriously wondering if there is any connection. I know its sounds crazy. However if you dont witness it you wouldnt believe it .  

I have started a regiment of sublingual B-12 and have increased is meds a bit. I do not attribute the past few days of calmer times to this change. I believe the activity and having something to look forward to has been more relevance.  

AllI can say is I will keep working at it till I either figure out what the "pre-cursor" is that triggers this  or until I can convince a medical professional that this needs further investigation OR BOTH!

For now I will take the slight improvement !

Hormones???

This madness continues---
Rage over what I cannot figure out. I have educated guesses but I cannot get him to tell me what is causing him pain and/or sorrow because during the course of his rant he explodes into tears. It drains me emotionally . As a parent you want so badly to "fix" the problem or find the solution. 

We have recently seen the doctor. Its one of those moments where the doctor wants to shrug his shoulders and basically pass it off as "the nature of the beast"  Everything in me says theres something specifically wrong. When you deal with an emotional disturbance or a neurological issue; where do you start ??   

And when you have no input how can I fix it or even present a case to any professional. I am exhausted  as I have no solution and seemingly no tools in my tool belt to help the situation.

Tonight my guess is that the TVschedule is in flux with all the Night time talk show wars and the Olympics on top of it--- he just cannot  digest the change. He is so ridgid in some aspects of his life.

Moreover my "educated" guess from my "on the job" training is that this is passage from the puberty to full adulthood and the hormones are even stronger than before. I may be totally wrong. It seems like the only correct assumption I can come up with. Believe me I dont have anything in my belt for that!

I will give it a little longer but if things dont even out I will hit the war-path. I will not rest . This is not like any behavior or action I have seen from my boy to date. I know him well enough that something is not right and again Hormones is my only guess.  

Quality of Life { vs.quantity ?}

Recently there have been several discussions on the Autism web groups about medications, homeopathic and holistic solutions. Whats right and whats not good. How you make decisions. More over what combination works for your child and family.

One specific issue is the drugs and all the "baggage" that come with it. First line of defense is that you dont want to give your child drugs. Your whole pregnancy it is beat into your head what you can and cant take because you dont want to hurt your baby: No alcohol-- God forbid Fetal Alcohol Syndrome!, No caffeine could cause birth defects and your child could be addicted, No smoking of course thats not good for the Mom as well as the baby, Obviously no uncontrolled substances, eat right , get lots of sleep, stay off your feet,etc etc etc--- OK  OK  We all get it and we all want to have healthy happy non-addicted  babies. For the most part we all sign on to this thought process because afterall; we want to be responsible caring protective parents.

 Then the baby comes and if your lucky you go home with your little bundle of joy and life goes on basically without a hitch. I dont know the exact percentage but lets just say 75 to 80% of the time that happens. Its great odds right????
Well for those of us who havent been so fortunate, The world is a different place. You walk into the Nursery where your child is being pumped with numerous drugs and has gadgets attached and you are speechless. Then if your lucky it is only temporary and in a few months everything is ok and it is all a distant memory. Then there are the rest of us who go home with great aspirations that things will get better and it is all the "Great Unknown". 

During infancy and toddler mode our kids have a great ability to "blend in".
Everyone is willing to work with your child and are exuberant about how cute they are and what a joy they are to work with. Somewhere around later elementary school, our children go from adorable and cute to "a force to be reckonned with!" They start growing and developing now the issues and confrontations start.

Most of us have professionals that help; hopefully ones who try to be educated about Autism. Even in Dakotas case we have people who have known him from birth. Though these pros are compassionate, caring people there comes a time when you question behavior or things happening to your child  and even they give in to this damn exhausting Autism . It becomes easier and easier for them to say "well its just the nature of the beast"! My heart bleeds because I dont accept that.

As parents and caregivers we are willing to provide whatever it takes to help our child exsist in this less than perfect world. Many "Uber" parents have tried and done strategy after strategy GfCf diet, ABA, OT, PT, just to name a few, Mostly in the name of avoiding medications. My hat is off to them. It takes a lot of work and committment. BUT isnt isnt always the answer. 

What I have discovered is that no matter what you do when you strip away all these options our kids are Autistic and will be for the duration of their lives. Ultimately we have to love and accept these kids as they are. WARTS AND ALL! Autism although it does not define them it is a part of who they are. There was recently a post by a girl who is High Functioning autistic who expressed her frustration with her parents because she felt that they were trying to "change" her.

I think the point I am trying to make is that you have to make decisions for whats right for you, for your autistic child and your family. And you have to advocate for your child when you feel something is not right. I have always said that you have to "GO with your GUT".
It will never let you down.

Finally there is never a cookie cutter answer when it comes to our kids. In the 23 years I have walked down this path I have seen "cures and therapies" come and go. For the most part these solutions work for a certain portion of the Autism community but I have yet to find anything that works across the board.
{Including medication} what I leave you with is one last thought: isnt always better to err on the side of Quality of life verses Quantity?
Dont let other decide for you-- take their counsel but make your own decision!

 This as an after thought- what spurred this particualtr excerpt was a discussion about certain medications causing weight gain and the aversion many parents seem to have about their children gaining weight.I understand out kids are already faced with challenges beyond the norm and we need to be diligent and concerned about their health and the side effects any medication might cause-- However when you have a child so miserable that they are acting out or crying or WHATEVER because their heads are so filled with static wouldnt it make sense that weight gain could be a small price to pay if your child felt better?Hence the Ultimate Question about quality verses quanity

    

Still suffering "the Funk"

The behavior and crying continue-- and it is really wearing on me emotionally. No parent wants to see their child experience sadness or grief. For our kids its even worse because most of them dont have any way to tell you WHY they are upset.

All of this is coupled with passing through puberty into full adulthood which I am sure is a contributor to the intensity of this situation. The flow of hormones and the natural needs of any human in the early twenties can be overwhelming but when you have very little understanding , no one to confide in and certainly no outlet, makes it almost an impossible situation. 

Moreso is the frustrastion you feel when you actually consult a professional and run into another WALL . We have been lucky to have people who know Dakotas "story" from birth as well as individuals who are for the most part informed, compassionate people who want to do the best they can for him yet sometimes even they slip into the "well its the nature of the beast" mode...........
As a parent that is a very hard and bitter pill to swallow.

Another part of the equation; is after you have seen and heard of  so many things that have come into the world of Autism that is the newest, the brightest, the most effective new treatment that eventually only works for a portion of the population or just fizzles all together, it becomes harder and harder to not be skeptical. 

There is a big part of me that believes that Autism is a part of who our children are . Not that it defines them but it is a part of their "makeup". I even read a post from a girl {extremely highfunctioning Autistic} who wrote of her frustration towards her parents, for trying to "fix" her when she was happy the way she was. It then becomes a question of how you help your child and when you help your child. It is very easy to ASSUME that your because your child does not express himself that he does not have an opinion or view. Thats is simply not true. We as caregivers have to respect them as individuals as we would any person who has the ability to express themselves. Where "the rub" comes in is decifering what your child is trying to tell you.

I have come to a place where I believe we have to accept our kids 
 "WARTS and ALL". Diets and ABA,OT, PT all aide in helping our kids but strip that all away and they are still Autsitic. They will be Autistic for the duration of their lives. So we do the best we can do, we help them with what we can, we never give up, we keep searching, we keep trying what works for them and we find what happiness we can give them.          

Back in the saddle again!

I have found since I started this journal that I have periods of time that are like writters block. There are many times I find myself thinking about what I would like to write and often construct it in my mind before putting it downin the journal. Other times the simple complications of living with Autism restrict me from taking the time to write OR I am confused about what is happening and I am not sure I want to write until I unravel the "puzzle".

I haven't made and entry since New Years Eve and to speak the truth I was in the middle of what I would consider a crisis. Although I am confident that there are still rough roads ahead  I feel like I may have a handle on what is happening.

Since before Christmas, Dakota has been having some pretty severe behaviors. Not very often but very intense and different than most in the past. I believe that it is "spawned" from the hormonal surge of puberty finally passing and him entering into full adulthood coupled with the crappy inability to not express his feelings and congnitive abilty to feel the emotion but not know how or why he is feeling these emotions.

Additionally he is still in deep depression from having to leave school. He continues to dwell and express sadness that he can no longer go to school. He just doesnt care that the kids are younger and the natural passage of rights is to graduate and move on or up. The irony is that up until now he seemed totally OK being by himself and that friends really were not a requirment for him. Natures cruel joke is he has developed this "typical" emotion and need ---- and of all times when he no loger ha a daily exposure to kids his own age.

These behaviors have been overwhelming for me as I have always felt like I had ideas or "tools in my tool belt" to deal with or handle these outbursts; Not this time. I have been shut down and baffled. For the record I still dont feel I have figured it out yet but I feel like I am starting to decifer the situation.

Well there is no apology for beiing absent the past month only an explanantion.

I have read several threads on web groups which have given me ideas for excerpts which I will strat writing about very soon.
For now Those of you whjo do read thank you for being interested enough to keep reading and I hope this year I may have more insights that can help you understand your situation.