Friday, July 22, 2011

want ~vs~ fear

It amused me to see him stop and think about what it meant to go off the board.he didnt dive by the way. check out that

sunshine, clouds and rainbows

Sometimes the sun can shine so bright you almost forget the rainy days even exist.

It's been wonderful here, mostly. I am emotional knowing Sammy's birthday is coming. It's difficult for me to see his younger brother passing him in so many skill sets. Sammy is such an intense kid but some days hes all cotton candy and lollipops. I enjoy those days. The days when he sits on my lap and cuddles up or kisses me without needing to be begged . The days he actually tells me about his day and smiles. The days when he looks me square in the eye and says thank you. A lot of those things Sam has learned by watching Nate master them.

Tonight was a night where Nate excelled and Sammy sputtered.We took them to the pool at their Auntie Norma's house. Nate jumped off the diving board swam from end to end(he does wear a float suit) but Sammy spazzed every few minutes. He kept trying and did very well in the end. but he never left the three foot side. He wore a life jacket and could more than touch bottom. He wanted to have fun with the big kids so bad. It breaks my heart to see the inner struggle of a child who wants to do something so badly that it's written in capital letters on their face. To see that something inside my boy is keeping him from going after the dream in his head. It must be like dueling Jedi in his head. How horrible that must be for him. I watched him tonight at war. Not with any other person but with himself.

These moments are the hardest because I cannot just rush in and protect him, love him and fix it. My hands are tied almost as much as his are. It makes me want to scream. Sometimes I wish autism were a person that I could just punch in the face, or scream at. I wish I could go in at night and steal my baby away from it, take control and take him back. What a fool I am to think I have that kind of power. But yet I work hard everyday, stealing bits of Sammy back from autism. like ingredients in a cake.

All I can do is support my son. Love him unconditionally. Treat him with respect and admiration for every fight he wins and even the ones he looses. Because, even when he does loose, he always goes back to fight just one more time. Each time I will be beside him with my light saber ready to take on anyone who dare challenge my Jedi. Until I stop to breath again and see the vibrant colors across the sky
I know there must be a rainbow somewhere for us. There is too much rain and sunshine for there not to be. It's just hard to see it sometimes when your in the battle.

Monday, July 18, 2011

open windows and breezes

There really are good days in my house. Sometimes I almost forget where we are at and the battles of the days gone by. There are days when autism lets sammy out to play with me and it makes my heart fly. Those moments aren't long, they dont last more than minutes.Every moment fills a lifetime of void I feel. There is a a dissconnect with Sam and I. Although I love him with all that I am it is sometimes hard to tell if he loves me too. I know he does with my logical side and he does say it. It's often the words he has been taught and not the way he feels. He feels anger fully, unabashedly and completely. He is learning about his feelings slowly. He sometimes feels sad, which always surprises me.
So these good days, the days with open windows and cool breezes, are my favorite. the days when Sammy get through the whole day without a behavior or lashing out. A day where he doesn't escape or run away or hit and swear. Friday was one of those days.

We went to the park and had a picnic. While the process of getting there was a horror show the actual event was amazing. Sammy played and laughed and behaved. I put no restrictions on him except that he was not to leave the playground. He ran , he played, he hid. He SMILED. a few times he attempted to interact with other kids and I watched as he clumsily interjected into the play and conversation. The children were forgiving and pleasant. I resisted the urge to go facilitate and simply sat and watched and he found his way into the crowd to play too as the little boy beside him simply shrugged and ran after him.
I was so happy to watch that moment to know Sam did it all by himself.

I told him how proud of him I was on the way home and how grateful I was for how well he behaved. Sammy smiled. A true pleased, cat ate the canary, kind of smile.We made it home without a single behavior. I watched him in the review mirror at a stop light. I caught his eyes and with those open windows  that cool breeze floated across the car as he smiled and said "I love you mom thanks for the picnic" and then he was gone. fluttering his fingers in front of his eyes so he could sleep. my sweet angel does love me and I sat there enjoying that breeze and taking a deep breath. I wanted to imprint that on my mind so that tonight when he screams and kicks over the pajamas I choose I can remind myself. He loves me.

MF Alert: Canadian 9-year-old forcibly given psychiatric drugs, over family's wishes — MFI Portal

MF Alert: Canadian 9-year-old forcibly given psychiatric drugs, over family's wishes — MFI Portal

How have we come so far? How did we allow this to happen. our most vulnerable population special needs kids and young children have been torn from parents and assaulted with drugs. Scarier still this is not an isolated case. There are many children who have been placed in Ministry care and as a result have been harmed further.

This poor baby. alone, scared and confused. clouded and neglected for. How my heart hurts for this precious girl and her father who loves her terribly.

When you kiss your kids goodnight tonight and say your prayers take just a moment to say an extra prayer for Ayn and her father. All things are possible through prayer. For HE can and HE will. his plan is in motion our job is to pray so that the evil of the world , the darkness, cannot win

Friday, July 15, 2011

other options for helping Ayn

If letter writing is not your thing consider tweeting for Ayn- tweet with me @AynLoves or @Justice4Ayn Join the Facebook group
Sign the Petition
Give to the Freedom Fund

this was a posted comment on the page so i figured I would repost it, just to make sure people see it

‪Derek Hoare talks to Ezra Levant with Sun News Network‬‏ - YouTube

‪Derek Hoare talks to Ezra Levant with Sun News Network‬‏ - YouTube

excuse the quality its recorded from the t.v. every time i think about this I feel ill. this little girl is in danger in custody. google "special needs children in ministry care" the stats of death and injury are ridiculous!

Thursday, July 14, 2011

the weight of it

I took Sammy to the grocery store. I typically choose not to since it's hard to keep his hands off things but I took him anyway. Temporary amnesia perhaps? Who knows what I was thinking.
Sam was pretty good.  He did discover the scales all over the produce department. everything we bought he would run over to the scales and place it inside.... flap flap flap. how much mom over and over flap flap flap... he was by far the most excited about the beets and snap peas.I would answer him each time the amount. he would ask if it was exact. and then ask if it was enough or too much. he would go to each veggie we have in our garden and repeat "we have those  right mom?" with such beaming pride and excitement that we did indeed have them in our garden. I apparently should have planted jalapeno peppers, Brussel sprouts and corn. I got an earful over those things. All was good until it was time to leave. Aj watched over him while I checked out and Sammy bolted towards the door. Aj stopped him and then of course Sam punched AJ. lovely. apparently Sammy's limit was about 5 minutes short of what needed to happen which is a vast improvement

Normal for us however most days. I still say it was a decent trip.

What bothers me though is the way people stare. they watch and make comments under their breath. Yes. I have five kids. No, I am not anymore overwhelmed right now than I was before #5 was born. Yes, everything is fine. Yes, I can handle it. No, I'm not some derelict mother who cannot control my kids.
Having five kids seems to make people want to find something to judge me on.
I use to be that way many moons ago. I was the one who thought I had parenting down. I was SOOO good at it. HA! youth and ignorance. I have been humbled by a child who chooses to do his own thing.  A child that laughs in the middle of the store for no reason and so loudly that people turn their heads and stare. I have been humbled by a child who runs away from me, cried for no outwardly discernible reason and screams words like moron and idiot  anytime he doesn't get what he wants. Who tells me he hates me on a daily basis. Even though I know he doesn't mean it, it still stings and even though I know sometimes he just cant control the impulse I still feel like a bad parent.
I have been humbled by Sammy. No need to judge me people, because quite frankly you will never be as hard on me as I am on myself

Abbotsford News - Support grows for Abbotsford dad trying to get back his autistic daughter

Abbotsford News - Support grows for Abbotsford dad trying to get back his autistic daughter

The more I read the more upset I get. This child was taken almost a MONTH ago. She spent 18 days crying. Dad just got his first report on her. days without seeing his child. the findings all stating no neglect, no abuse, no mistreatment found. yet they still hold Ayn. can you imagine what this must feel like for this man?

Wednesday, July 13, 2011

No walk in the park

Baseball. Fun Right? Sammy's 13 year old brother plays baseball, so we spend time at the park a few times a week. Sammy usually ends up in the trees playing guns along side a few other kids. kind of with and kind of not. AJ's friend Jacob was there last night and Sammy loves him. Jake had a friend with him  and Sammy not knowing how to interject himself decided beating the snot out of this kid was a good idea. We were able to stop it and redirect. the rest of the evening was going well. He would run around the park we would chase him. It's old hat and we are so use to it by now it's no big deal. He has gotten better about staying within the boundaries we set and not running off.

Well he went to throw something away and bolted. Apparently some bigger kids were joking around and teasing Jake. Now when I say bigger kids I mean 6 foot tall bigger kids! Sammy lost it and tried to take on the biggest one. Daniel intervened and we removed Sammy kicking and screaming. everyone looking at us wondering what the heck just happened. Some nights all I can do is shake my head and wonder if it ever gets better

The story of Ayn

Ayn is a 9 year old girl with 2 siblings, a loving father, and autism. She was removed from her father's care because child services felt he was overburdened. This poor baby is now up all night, over medicated, having major behaviors and is still not home with dad. How can these things happen in this day and age. It isn't ok. If you have a second check out his blog 2 posts down. Here is also the form letter for the campaign to help Ayn by writing letters. lets get it moving people and get this girl home.


Dear ____________

I would like to bring to your attention please an urgent matter which was recently brought to mine.  A little girl, Ayn van Dyk, has been coercively removed from the protection of her father Derek Hoare by the Ministry of Children and Family Development, on June 16th 2011 in Abbotsford, British Columbia.  Though I understand that the separation of powers disallows you to interfere in a Judicial matter, your attention to this matter is due, and any ministerial awareness you can bring is deserved.  Ayn is still a Canadian citizen, who should have the rights there in, she has been removed from her home and as of July 01 still awarded no contact with her family. No allegations of abuse exist, the Ministry believes that Mr. Hoare though a good, loving father, is overwhelmed with his three children, two of whom are autistic. And that the least disruptive measure possible to ensure Ayn is protected is removal from the home. It is with little investigation into the matter which the Ministry has done this, as they have not yet spoken to relevant parties concerning Ayn's behaviour in the home.  
Mr. Hoare and others have stated that Ayn was showing great improvment in the home, yet continued to struggle in a school setting, due to her frequent aggression, she was placed in isolation on a limited school day, and Mr. Hoare was brought in frequently to diffuse Ayn's outbursts or bring her home, where she was calm and constructive.  This child has demonstrated a clear ability to thrive in the home in an unmedicated state, and hence medication is clearly not required for this girls stabilization. Yet deemed not suitable for the foster care system Ayn has been placed in a "specialized hospital" for evaluation and stabilization. Please stand up for the rights of this little girl, she very likely will not undergo any medicating willfully. And has thus: been removed from a loving home, with ever changing and adapting safety measures in place, and been placed in a facility, where she may live through coercive medicating.  
Love, understanding, consistency and stability are very critical to an autistic child's development, to have her endure this experience, let alone the continuation of it, cannot be good for her well being.  Logically if this girl was thriving in the home she should be returned and given proper education and behavioural supports when outside the home, where she was volatile and uncooperative. Families of autistic people everywhere have to protect their children throughout their development, and I believe it is with their loving and willing families first with whom they should reside.  If the Ministry is indeed concerned about Ayn's safety at home or behaviour in the school, coercively removing her and instutionalizing her is an abhorrent reaction to such concern.

With respectful urgency,

Tuesday, July 12, 2011

Top 25 Autism Spectrum Blogs-Moms, dads, young people blogging ASD

Top 25 Autism Spectrum Blogs-Moms, dads, young people blogging ASD

come one guys vote for you-leave-me-breadless and check out all the other amazing blogs on the site. read them

alphabet soup

Everything has a label, we have ADHD, PDD, GDD, NT, PPD, HFA, AP, GD, EC, and OCD just to name a few. everything has something to signify the disorder, the type of parenting, a deviation from the norm. We put labels on all of it, Like each person is simply a spice or a can in the pantry of life.

Sam's labels help him get services. PDD and ADHD and PICA. He gets help, he becomes a child in the pantry with his label. I am guilty of it. I attach that label whenever he starts acting out in public. Because I feel guilt that I cant "control my child" I feel guilt and fear that I am being judged across the board for his behavior. Once again he LOOKS so typical so I feel like I have to justify. It's so unfair to him. I am working on it

I have always labeled myself as well. I am an AP parent. yup! It's like a badge of honor that I wear proudly. I breastfeed,cloth diaper,co-sleep, anticipate the needs of my babies and let my babies self wean. It has defined who I am as a parent for 16 years. My XH mother railed me for it, my mother applauded me for it, my friends questioned it, applied it, renounced it and adapted it.

Then came Sammy. My world came full stop something like the titanic after hitting the iceberg. How can you parent a child with attachment practices that refuses to attach? SERIOUSLY FRUSTRATING. How do you anticipate needs for a child who doesn't have a clue what his needs are? HOW do I do this? I don't I guess.

I have had to change my strategy. My AP'ness becomes more like that of a bear cub's mother. I protect him from himself and from the world. I tell people that he is autistic so that he wont be judged as a bad kid. So they look at him with empathy and not judgement. He doesn't need sympathy he isn't broken and neither am I

I have to parent him differently. I have to let him struggle and learn. I have to allow him frustration and anger so that he can propel forward. I can't mitigate his struggle but I can hold his hand and guide him, love him and hold him when it all becomes too much for both of us.

Our kids don't assimilate the way other kids do. They don't learn simply by seeing it happen. Each step has to be taught and retaught. over and over.SN kids don't just "figure it out" some day, they don't magically wake up one day and get it. OK maybe some do but most do not.

Attachment parenting is all about meeting the needs of each child right? I am, just not in the typical way other people do. For kids like Sammy we attachment parent by stepping back, holding our breath and often simply saying a quiet prayer. Dear Lord let this be the right thing.

Monday, July 11, 2011

The baby whisperer

So many people are amazed at how babies are drawn to Sammy. They love him.crying baby? That's no match for Super Sam! We have a new baby here.She.Loves.Sam.

Love isn't really a strong enough word for what Sammy and Grace have. She looks at Sammy as though he is her hero.Her very own knight in shining armor.Can a 3 month old baby idolize someone? If it's possible she does. They share moments when I watch them looking at each other. no words no noise just the two of them. I am amazed...  Amazed to see the light in my girl's eyes and the love she has for him. To hear him tell me that he loves her so much he wants to eat her. To see my son, who often resembles The Hulk in a roid rage, soften when he sees his sister. To stop a behavior just because she makes a noise. Its amazing to see how much this little being has changed our house. how much it has changed Sammy.
 There is this part of me, this deep hidden place where the trolls live (before coffee trolls), that is jealous, hurt and almost sad. I know it's so irrational but I am jealous that she connects with him on a level I can't. Even as his mother.
When we brought her home he told me "Sorry mom I cant love you anymore, I love Grace" and that has held true. He barely acknowledged me in passing. He doesn't need to. Wherever I am Grace is too. I tried to take him with me , just him and I and he refused. I feel like I failed, or hit the lottery I cant figure out which one really. But for now I am just grateful that he loves her and it isn't the other way around. I'll just sit here and watch him sleep, kiss his brow, and whisper to him that I still love a banana