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Ramblings about life . . .

What I share about my life is simply to help reinforce the knowledge that it is possible to live with love and laughter, in between the tough times.

Life is what we make of it, no matter how harrowing. We accept and embody this with-in ourselves, thereby allowing the energy to manifest outwardly in our reality.

It starts with each one of us as an individual to form the collective consciousness.

Be the dream.

We honour the light and the life within you.

Please be aware - I upload other bloggers' posts and then delete after a month. This is my journey and others help me understand where I am, until they become irrelevant (a few posts excepted).



Sunday, 8 May 2011

I love someone with autism - (living with autism from a mom's point of view)

This is my story...(Dark Fyre wrote this blog)
When my son was diagnosed with ADHD and also Aspergers...I went into a downward spiral of many mixed emotions. At first I was in denial...how could my child have this? No way...they are so wrong... I was a little furious that they even mentioned he seems to have a problem, (the usual parents go through).


Until one day, they asked me to come in and just sit and watch him in school. So I went to school to observe how he behaves at school... and I couldn't believe it!I was seeing something I never seen at home. The way he walked, how he behaved around the others...his emotions...fears...he would not talk to any one at all...and I'm not talking your typical shy child. He just would not communicate! No emotion what so ever. Its as if he had lost him self somewhere. Then a second later he would be screaming and throwing a tantrum etc.

I was in shock...why did I not see this? Why is he different here than home? Then again home is home...there are no others here, for him to have to deal with...just us...Many questions filled my head...until I finally broke down and cried...I felt defeated I felt I had done something wrong...I struggled with all of my memories of his earliest childhood years, trying to figure out where did it all go wrong?Had he become this way because of something I had done wrong...why I asked myself ...he couldn't be like the other children...how will his life turn out now? How will this effect him...I just want him to be happy and have a good life...can he? Will he? Will other children bully him, laugh at and tease him, hurt him, because he's different?

I was in total devastation...This was my first child and before this I had never had any experience with children what so ever...when I were younger holding a baby even felt awkward - so imagine the emotions there...After the all pity parties I held for myself...and after all the fear and hurt I felt for my child - within those...I knew I had to pick myself up... and be strong for him....learn everything I need to learn about this...and do everything in my power as a mom to make his life what he deserves it to be...I spent countless hours reading...everything about autism, adhd, children's learning disabilities...I mean everything! I would be up until the crack of dawn...studying up...learning all I can... to arm myself...prepare myself for this battle.

As the years slowly slipped by...one major problem I had was with some of the teachers. They were very intolerant to his behaviors and would in meetings ask me why I can’t control my child... why doesn't he pay attention in class...why doesn't he participate? (knowing he is on the autism spectrum) but still putting a lot of blame on him and me...telling me I'm his mom ...and I need to learn to control him (these are teachers with some education on children's disabilities) they were taught to know how to deal with these children - they are taught to understand about the behaviors - I have no fuckin degree! I'm doing the best I can! My child is on the spectrum - his behaviors are a part of his condition! They know this! so WTF!

I started becoming angry. People think sometimes that the behaviors can be controlled easily, but they are not! Hell we still have yet to understand why and learn about them what is in the mind of autism and children with autism. Some people looked at an autistic child as nothing but a spoiled brat - which was far from the truth. You would get constantly blamed for these behaviors and called a bad mother...So the teachers and doctors decided...the best way to deal with this all was to drug my child. This was the tool of choice...made their lives a hella better! Right?! Now they can go on and teach in peace...whilst my child looses himself in the ever so wonderful world of being drugged up...(of course at first I didn't feel this way I thought that it will be a good thing for him and the only way to help him) stupid I was...I'm not putting down the pharmaceutical world here...(not a fan of it either)...some people really need a little drug therapy...when there is nothing left to do and it helps keep them from hurting their self or others right? No?

Anyhow...so we tried this approach...for a while. Oh the teachers loved it...it kept them sane for a while there! They had their peace! Me I wasn't so sure about it...I started to notice changes...Yes during the day in school he was more settled...Quiet...But at home at night he couldn't sleep! He could not eat! His behavior started to become a little on the violent side...
(I'll never forget the heart wrenching day, when he came home and asked me mom why cant I be like all the rest of the kids, why am I so different? Why do I have to take medicine? That day his words to this day still haunt me today...How do you answer this to a child...)

He was fighting with his little brother a lot...he would bite, pinch, kick, punch...I had a lot of bruises those days...soon after teachers started to complain again to me...that he's falling asleep in class not eating he looks lethargic, etc. Well hello?! He's on drugs !? Maybe this is the reason why? The drugs was actually more so for his adhd...concerta - if I spelled that correctly. They were once again all up my arse. They wanted to up his doses of drugs!!! So I decided to do something else this time...it was a little risk I took but it had to be done...I went against his teachers, doctors and neurologist/psychologist ...and I slowly eased him off the med and then ceased to give it to him...

Not letting them know this of course, not yet anyway...as the days went by I got less complaints...then I even got a compliment that he was doing real good paying attention and all...so this is when I decided to make an appointment with his neuro- psychologist...to talk about what I had done, and the changes is had made. He told me then so be it ..if it works then he don't need any drugs...and the hell with teachers...he said they are all just looking to better their days by throwing the kids on drugs makes life easier for them...tell them to go $%$## yeah he did...(haha).

We then decided a little group therapy with kids like him at the children's hospital would be good for him...social skills classes. To learn to interact and so on...learn about feelings emotions empathy etc. So the yrs slip by again. At first they went well...he was making friends having fun...but as the yrs went by and he kept going to these things he grew weary and also started to developed anxiety until the last day we went...(yes once again I acted on my own. and took him off these courses).

He just had a total anxiety/panic attack whilst we were their waiting in the waiting room for the therapists to take the children up. So I told them that day I were taking him home and never went back to the children's hospital...after that - I asked him later why? Why did it bother him so much. He told me...because it were the same thing over and over again each year...they’re not progressing into anything new.

So this is when I began my journey - my own way in handling his condition. I taught him everything, about people emotions...style...situations and how people handle them...but more importantly I took on a diff approach I did not baby him. I was very blunt and honest...about autism, him, people etc...and most of all I allowed him to be him. I taught him to love himself regardless of any differences...we would talk all the time about everything...he's told me many things about his thoughts...his visions...the world and people...things I never thought of or seen...I started to realize there is something different here...

Also which I never mentioned he was so...so...so...very in tune with my inner feelings thoughts and emotions...he knew I was going to be sad or angry before I was...he just knew things no one else would ever know...he told me about the universe. At times... and mankind as he would put it in his words...(: I can go on but I wont...(: which brings me to the end of this blog.

I was inspired to share this with you all because of a posting I read today by Karen Cottle (Autism - ramblings about life)...it most def touched me it resonated with me so much...there is definitely something there too think about...Thank you, Karen...


A reply by Daniel
I’m feeling deeply touched by these stories :") Here I’ll share a bit on growing up with some of the same experiences:

There was a bit of the early childhood autism as a quiet kid with speech troubles and a solitary nature. I’m on high prescription glasses with eye operations since the daycare years that had me in the ISP classroom. It was very tough to go through, being assigned to the same angry attitude supervisor for seven years, year after year again in a separate classroom. She was a real punisher (kids kept indoors for recess with wrong answers ripped up to be redone) and it was a wonder how things were allowed to go on that way. My parents received phone calls all the time about the things I’d done wrong, and on occasion being forced to call them myself and give a confession about unfinished work I was too depressed to care about. So mainly my fear of this teacher is what pushed me into ADD/PDD withdrawal, and we really need to do what we can to raise awareness and stop this from happening, as it still does all the time. My parents were sending me to hospital psychiatry for years based on the supervisor’s story, and now that they hear what really happened, they can only wish they knew more and would have done things differently.

I had slow concentration in some areas, but in others was an avid reader and writer about stories of other worlds that came naturally to me. They would say I had a unique imagination, but didn’t know how to listen, and it sure is a frustrating view of sides there. But creativity is what helped me avoid being put on medication, and I was often being tested for it by separate child therapists I knew as ‘the nice lady’ that came and went. When I’m shown a cartoon picture of a boy on a bridge, it was a choice between throwing him in the lake, or having him look up and dream of another planet.

I agree that there’s a lot of empathic ability in autism. It was my genetic eyesight that first got me sitting at the same table, but being with a few others who have honest physical / mental disabilities with not being able to easily control their emotions – you learn a deep respect for them and become more open to observing everything. It gets difficult later when watching other kids getting into crime and bullying, mainly because of their own struggles with popularity and/or loneliness in a school life constantly raising us to be in competition for the honour roll. For those in the ISP lifestyle our hardships begin with the frustration of having to sit still and be silenced. It’s hard to understand being empathic early when we’d feel so much emotionally and then be taught to suppress it in silence, as if not to bother anyone with unwanted noise.

Basically childhood forces autistic kids to quiet down by any means, through strict lessons or sedative drugs. Then after that – High school life for the teen is about reversing their shyness with more therapy about learning to reopen themselves, but often still with a voice that is conditioned to express only by repeating phrases / words of an attitude continued in the working world of customer service. It’s an unbreakable chain that I do believe us Starchildren are here to sever. Our school system has to change, because kids still don’t have the freedom to be themselves; so at some point the gangs of rebellion are created.
I’m getting passionate here :D I’ve been trying to find a way to say this and will sure be here to support you.

The biggest concern we worry about with medication is how it takes the warrior spirit away in numbness – and we will need to learn how to channel the energies of frustration into something productive that the world will listen to. The quiet kid always becomes one of the world’s greatest speakers. There’s an ongoing process of having to radically transform through tough lessons all the time, and yes there can be the panic attacks from taking on too much, and needing to know how to better shield ourselves – now that many of us have found our way into the psychic lifestyle with others going through the same things, and we are learning a lot. All the strength to us.

~ Dan / Aloe

Dark Fyre’s replyThere are some very severe cases of autism...which could be rather frightening...(that really makes it difficult for the child to do as most people do everyday in life such as reading, writing...communicating...eating, getting dressed etc) also there are some children whom continuously hurt their selves like banging their head on the wall.

A child that was in my sons school was like this...it broke my heart. I remember every morn when I took the kids to school I would see him there all alone...whilst other kids stood outside waiting for the bell to ring to go into school in the morning. This boy would stand facing the wall banging his head against it...but still...what really got me was the teachers and everyone else let this happen just left him alone...instead of maybe distracting him...having him come inside to wait...yes in these cases extensive therapy is needed but also a lot of patience and understanding and someone who really cares and wants to learn what is in this child's mind...how can they reach them? Not just drug him up...I think that in the most severe cases there is another underlying neurological condition which is just as complex or far worse...like my son had adhd...which eventually just faded out as he grew and rather quickly too.

He started out badly as well...he wouldn't answer when talked to in school kids would ask him to play a game with him and he would just sit there blank faced and stare behind them...never answering them...noises distracted him like the sound of the heater...as small a sound it were he would hear that over everyone else’s conversations ...he would pull his shirt over his head to hide his face and walk around like the headless man...lie on the floor in a fetal position...flap his hands all over when upset or excited...of course I never knew this at first.

With time and phone calls from school I learned...I can go on...but another time or this will become a book again, and it is only a reply lol...yes some things he did were a little severe...but...one day he just stopped! I personally think the greatest therapy for him though was not the drugs...like doctors and teachers believed...not the years of social skills in the children’s hospital but just me being me and me teaching him how to simply be him...I was very honest sometimes brutally...but he needed to hear that...not be babied and not told things about his self and autism and the realities of peoples thoughts...I told him people are cruel and can be terrible and in his life like everyone else he will meet those type...but as long as he knows whom he is inside believes in himself...no one can ever bring him down...I told him to follow his passions and dreams...want to learn...that imagination is one of the most important things for his soul...I taught him kindness...and hate...love and respect...and whilst I were there teaching I also learned a lot about the beauty in life - yes we may see the ugliness in life - but somehow some of the children with autism just don't see it - not at least like we do...honestly his growing up with autism was never a burden...was never anything terrible that I wanna die cause I just can’t handle it anymore type of thing. He really wasn't harder to raise then any other child would be...I love him, I adore him, he is a precious gift to life...and to all those he will touch with in his life...he will be as well...all of these children are it wasn't him that was difficult it were other people...people who were ignorant to his condition...teachers, doctors (some) etc.

I would never change anything about my son ever! I wouldn't ever have wanted another child but him...he is my life.

Dark Fyre

I would like to thank Dark Fyre and Daniel for allowing me to post their moving stories on my website and blog.

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