Tuesday, May 10, 2011

Dropping Expectations


Another lesson in not expecting, letting life flow, letting it all happen as it will.

Mother's day has been a puzzle. How do I NOT expect what other Mother's enjoy and perhaps take for granted each year? Do I want to sit down and tell him what to write, what to draw to show he loves me? No. I want it to come from him, to be genuine, heartfelt and from his heart.

In the week before this mother's day, I planned a bit differently. I found canvasses and paint, set it all up outside in the sun. I began painting for MY mom. I thouroughly enjoyed the process. My son ran around the yard, popping in and in out, gradually more in than out. I left a canvas to the side, and when he asked if he could paint too, I was ready for it!

"I'm painting for my mom for mother's day", I told him. "I want to do that"! he replied excitedly. And as he began prepping his canvas, I finished up my painting (for now. tee hee) and moved away to the garden, allowing him privacy. Chatted with him a little, to let him know I was still around, because I know he likes that.

After a while, I told him I was going inside. When he came in later, I asked if he was done painting, told him we'd wait a bit til it dried, and then asked if he'd like to hide it til next week. When he said "yes!" I got a place ready in the basement where he could stash it away from me, and after a while he carefully did.

And... a mother's day suprise for me was born!

I spent the next few days pondering all my feelings on this. I pondered my own mother, and how we express love to each other EVERY day. Jordan Loves me EVERY day, with every part of his being, just like I love her. I thought about the awkwardness of Mom's day for me, I love on my Mom hugely every single day, we talk, we email, we visit OFTEN. We know we love each other. Mom's day almost seems to be a day for families who aren't close to their mom's. "we know you ignore her all year.. so better buy flowers" (covered in pesticides to boot!)

I pondered, is that what I want for my Mom's days in the future? Really fancy, commericalized love brought to you by FTD and Hallmark?

OR.. do I want the all day every day love,
the ..... "mom can we have a huge snuggle" Love,
the....... "who loves each other the most?" Love games,
the......... holding hands everywhere we go Love,
the ......"mom BE with me" Love!
Real heartfelt created by Jordan, never imitated always original LOVE that only Jordan has.

The painting was the icing on the cake, the crux, the apex of my thoughts. What he gave me, reminded me to let it go, don't EXPECT.. ACCEPT! what comes, will always be greater than I can imagine.

I EXPECTED a typical painting. A tree, a flower, a bird, even Mario! Thankfully, Jordan is always more than EXPECTED, what I got is LOVE on paper...

he loves me so, I don't need a day marked on the calendar, he shows me every day in so many ways!

Friday, April 22, 2011

Lessons from the Bad days

Waiting to be struck;
Yelled at, dismissed.

Any word I say....
Rejected, Inflamed.

Running away…..
Will he be there at the top of the stairs?

Strangely grateful for the glare, the stares, and the judging.
Transforming me from victim to mother bear, protecting her cub.



Wrote this "poem" on the transit yesterday. It was a day, a day where I pray for it to end as quickly as it can. A day where my otherwise joyful son, my otherwise loving, kind son forgets how to be calm, forgets how to process anxiety and takes it all out on his safe person, Me.

Someone I love so much, attacking me phsycially.. pulling hair, pushing, kicking. Someone I admire so much, attacking me verbally.. "I hate you! Go away!
"

I try to be quiet, no talking, no emotion. Continue walking, and he'll follow. Get where we need to go, then get home as fast as we can.


Any moment, that he feels opposition from the world, it's kick MOM, push MOM, yell at MOM. I walk, I be quiet, I try to soften the corners he'll come across.
I feel fear. Get us home Universe. Help us get home without emotions getting bigger. His body, his movements.. large and out of control. Spinning, whirling, jumping off walls, literally! Looks from all around, judging, whispered comments that probably have nothing to do with me, but stab me in the heart.

My victim feelings start sloughing off, and I feel protective. "Leave him alone" I want to shout. "He has autism.. he's actually wonderful, you just don't know!" It makes me stronger. My spine lengthens and I become 20 feet tall, ready to protect Jordan from "them".. those who moments before may have wanted to protect me. It saves me, to be his protector. It saves us, that our conflict is no longer my center. It saves Jordan, that the focus is off him, and he can possibly begin to unwind his anxiety.

We begin to heal, when I move back to Mother, away from victim.

Because.. I'm not a victim. I'm Jordan's partner, so far in life. We're here to help each other grow. And we are. Growing, becoming more, together all the time. When the hard days are over, and a few days have passed, I know I've grown again, for the better.

Sunday, April 17, 2011

Special needs kids have a BC Government problem!

Background news

April 13th article in Langley Advance about a 6yr old with Autism kicked out of school.

http://www.langleyadvance.com/health/year+ousted+from+Topham/4581459/story.html

An April 15 letter to the editor commending the teachers who refused a 6-year old with autism as too dangerous:

http://www.theprovince.com/opinion/Regular+kids+need+help/4619945/story.html



And a column announcing that the BC government has a "special needs

problem":

http://www.theprovince.com/life/government+special+needs+problem/4619917/story.html


Dawn Steele - wrote this beautiful letter


Is this "beat up on special-needs kids" week at The Province?

>

Teacher Jill Ewart applauds "brave" colleagues who rejected a 6-year old

with autism as too dangerous to teach. Columnist Mike Smyth announces the

BC government has "a special-needs problem" because these kids consume

teachers' time, "taking away from other children who need help."

Right, blame the victims! Imagine deeming cancer patients a threat to

healthcare because they divert attention from other patients?

Actually, kids with special needs have a BC government problem. And a

teacher problem. Provincial policies have cut 25% of Vancouver's special

education teachers since 2001,despite a 33% increase in special needs

students - a BC-wide pattern. Without special ed training or support,

regular teachers like Ewart are failing 20% of the students they're paid to teach.

Kids with special needs -- like all kids - misbehave when adults fail to

set boundaries or understand their needs, not because of labels like

autism.

What's the answer? Holding cells where challenging kids only hurt each

other (because as second-class citizens their safety and education don't

really matter?) Fixing classes by writing off challenging kids isn't a

solution. Train the teachers and restore classroom supports.

Dawn Steele

Vancouver Parents for Successful Inclusion

825 West 23rd Avenue, Vancouver

604 874-1416

http://www.vpsinclusion.net/index.html


- FROM A COMMENT THREAD - I was dismayed but not at all suprised to read this A'hole's opinion.. which unfortunately is too common..


from Alex

Autistic kids should obviously not be allowed to be teached in the same learning enviroment, or close to the same learning enviroment as a generally normal student.

The people with the parents are selfish and are extremely rude,

- Autisim interupts learning activities

- Scare's children who do not understand their condition

- Can led to an uncomfortable learning enviroment

I can understand the "attempts" Of trying to assimilate the child into the education system, However the education system was never designed to accomadate these children, If we are not only looking at that, the parents should feel "inhuman" to allow their child to suffer infront of the other kids, I do believe autistic people still have feelings.

I believe a specially designed private school for Autistic children should be opened in a majority of B.C districts. If the parents can not afford, Then the goverment should help them with the funding.


April 15, 2011


12:01 PM

MY COMMENTS -

It's all so disturbing to me. I feel so sad for the family in Langley. It so easily could have been my family. I was happy to note that the SEA (special education assistant) assigned to be his helper, was NOT one of the people who complained. They know better, they know how to help kids work things out, when and how to leave a situation,they have empathy, understanding and respect...


When my son was in public school (cringe) he had an amazing SEA, Mrs. T, I'll call her. She was excellent at being with my son. The problems would come when it would be her break time, or she would be called away to help others and he'd have to be with a Teachers asssitant, or other untrained person, who wouldn't take time (and wasn't given the opportunity to take the time) to understand and respect my son.

Even though she was assigned to my son, they'd change his schedule, put him with this horrible woman who totally didn't get my son while Mrs. T was busy, then wonder why he'd fly off the handle. We only had Mrs. T one year, the next year we started with someone new, Mrs. T could consult, but it wasn't the same. Incidinces, misunderstandings grew and grew.. and since everyone blames the kid who can't speak up for himself, my son was called difficult, agressive, etc. etc, meetings upon meetings, picking him up sometimes 20 min after I dropped him off... ARGH..

No more.. we did 3 months of grade 2 in public school, then i said we quit!


We registered with a Distributed Learning Center. We are essentially homeschooling, but connected to a "school" where we can choose to attend some classes if we want, with other kids, go on field trips, arrange our own get togethers with others.. all the familes are accepting, respectful, open....

I understand I'm blessed to work for myself, so homeschooling was available as an option for me. It's not easy all the time, some people ask "how do you do it?" In the long run, it's easier than the alternative. And, we're both so much happier that the efforts required are an easy payment. I can't imagine where we would be, if my son would have been forced to stay in school.. I'd guess the cover of the Langley Advance!

I'm grateful that life has brought me the lessons, the challenges for me to learn empathy, caring and love for other humans of all abilities. I'm grateful to have a huge loving heart. I feel bad for those close minded, terrified people out there, hiding from the "different" Life will keep smacking them in the face with lessons until they come to realize they are no better than anyone else, only different. And different is not less...

And in response to Alex's comment (Autistic kids should obviously not be allowed to be teached in the same learning enviroment, or close to the same learning enviroment as a generally NORMAL student) .. Normal is a dryer setting AHOLE!

Friday, March 18, 2011

Brain Scan (mapping) info March 10, 2011

The scans are long and full of numbers and acronoyms.. here's what it breaks down as, in ways we can use and understand:

Most of the scans compare the perecentage difference between right/left brain waves.. the scans show the average range difference, then show Jordan’s difference in percentage and what that translates to for him

Most exciting and special is, The % change between Alpha EO to EC - average is 50%- Jordan's waves are 132% to the right, which translates as Highly creative - they have dubbed this "the artists Signature" Talking with the doctors, they have told me, that once his spinning thoughts, stress tolerance etc is manageable for him, he'll have the ability to access that! He'll be able to be slow enough to fully Create! To fully recognize and use his amazing given abilities! We're very excited!

1. Eo to ec alpha - avg – 30% jordan is 8.7 - this translates to poor retention of information and short term memory

2. Theta amplitude – average is 12-13% - jordan is 20.09 – this translates to hard to focus

3. UT theta/Beta – average – 2.2 – jordan 2.94 – again poor retention/comprehension

4. Alpha peak frequencies – under 9.5 – mental sluggishness (jordan is 9.4 & 8.6 on either side)

5. Theta/SMR – if over 3 (jordan is 3.04 not far from average but we’re starting at 3, so it still significant) inability to sit still, to calm the body, sleep disturbances

6. Theat /Beta EO – average is between 1.8-2.2 – jordan is 1.22 (significantly lower than average) – shows poor stress tolerance, racing thoughts, anxiety, inefficient self-“quieting

7. Theta/Beta (EC) average is under 2.2 – one side is 2.28 (close) other side is 2.56 (significant difference) – deficiencies in retrivival of information, impulse control, emotional volatility

8. Theta/Alpha (EC) average 1.2-1.6 – one side 1.74 / other side 1.69 – problems with organization, sequencing, sustained focus, task completion, staying on task, talkativeness

9. F4/F3 Alpha- should have an average difference of 15% - jordan’s is 27.9 difference – translates to oppositonal, defiant and socially aggressive or socially indifferent behaviour, associated with emotional disregulation

10. F4/ F3 Theta – average difference is 15% Jordan is 24.15% - emotional volatility or restricted emotional range

11. Delta EC – average under 9.- jordan is 11.19 cognitive deficits such as problems with concentration, forgetfulness, comprehension

12. HiBeta/Beta – average is a difference between .45-.55 – Jordan is .69 – it says above .55 – stubbornness/ Obsessive compulsive tendencies OR Obsessive compulsive disorder, preservation in ASD

I’m not sure which part translates, but they also told me that it seems that in Jordan’s brain, when someone/self asks his brain to focus/concentrate – it goes immediately to daydream.. like the wires are crossed between daydream/create & concentrate..
“jordan get to it.. clean your room “ suddenly becomes “ la la la.. Mario…lego… creations…”


We've begun Neurofeedback, this shows his brain how to focus, shows his brain how efficent it can be when it is able to focus. The brain wants to be running optimumlly, so the more it's shown the more it strives to get there on it's own. We have 2 sessions, and I have had 2 instances that I know for sure, he would have had a much harder time (meltdown) in the past. We will complete 15-20 sessions, and see how happy his brain can be.

Wednesday, March 16, 2011

"They should have Autism too"

On our way to a play today, "Munscha Mia" at Carousel Theatre on Granville Island, we were reading Robert Munsch books on the way.

We read Down the Drain, then began "Stephanies Ponytail'

In Stephanies story - Stephanie wants a ponytail, wears it to school.. everyone calls her ugly (agh!) then the next day they all copy her and wear ponytails. Each day Stephanie does a different type of ponytail.. kids call her ugly.. then they copycat her the next day.

I commented to Jordan..those are the sheeple son, those are the ones that follow what everyone does, without discovering and being what is special in them. It's good to be following your own path, show your creativity, be unique and original...


"They should have Autism too" was his reply!

Later he explained, when asked.. he wishes they could have autism, so they can be creative and be themsevles, not copycats..

Beautiful son, I think your right.. more autism might just make a better world! thanks for sharing your thoughts. you rock!

Monday, January 31, 2011

My favorite time of Day..

Usually a little frazzled, tired at almost bedtime, I wasn't fully listening when Jordan said..

"Mom do you know what my favorite time of day is?"

No, I don't Jordan, what is it?

"Morning Snuggle!" (Suddenly I feel more energized!)

"Mom, do you know what my second favorite time of day is?"
( I was truly expecting him to say something about Mario for this one)

"Nighttime snuggle time, but morning snuggle is #1."

What a way to make your Mom feel good my beautiful amazing son. So we went off to read and have a nightime snuggle. Life is sooooo good!

Thursday, December 30, 2010

Reminders to me from Jordan

Like many households, we've got some coughs and aches and pains over here. Tries patience, makes tasks feel bigger than they are.

I was in the kitchen, ready to unload and reload dishwasher, opened it up to find they were all dirty still! Agh. Counters already full, I didn't even have room to empty the dirty stuff! Frustrating! I began my "quiet" complaining.

My son in the living room, as always is talking away to me, unknowing if I'm listening or not. Then " mom, you HAVE to see this"

"Jordan you know I'm busy in the kitchen right now, you can bring your book in here"

"No.. you MUST come and see this star wars set" (he's reading the lego Star wars collection encylopedia)

"Jordan, I'm busy in the kitchen, and having a very hard time"

"MOM!"

"Jordan, I'm having a hard time, it is not kind of you to ignore someone having a hard time and insist they come pay attention to you. If you want me to come look, You will first need to either - offer to help the person in need,offer words of sympathy or an offer to hug it out. And I returned to the kitchen.

"MOM - what's a word of sympathy?"

And that stopped me. Once again, I'd forgotten ! Assumed he knew what to say, that he'd heard me say it and knew how to apply it.

For years, I'd helped him thru lifes situations, giving him the words, saying them out loud so he could repeat them and learn them, why did i think that was done?

thank you Jordan! I am in awe of your loving heart. As soon as I'd mentioned there was something you COULD do to help, you asked how in your own way. You wanted to help me, I'd just forgotten to give you the tools to do so.

"Jordan - words of sympathy would be something like "I'm sorry your having such a hard time right now" And so he repeated it back and gave me a hug too!

Thank you son, I do feel better now. Thanks for the reminders.