Roses And Thorns

There's a column in a Campbell River local newspaper called Roses and Thorns.  I love the title!  And some of the gripping and loving stories are interesting, but what I found most interesting is that the 'thorns' stories were much, much longer than the 'rose' stories.  This made me think of me...  I hate it when that happens.

Why is it that we seem to do more gripping and complaining than we do telling 'rose' stories?  Possibly human nature, a sort of 'misery loves company kind of thing.'  Maybe we all pretend to be positive, but deep inside we're just negative Nelley's...

When it boils right down to it, my major 'thorn' is ignorance.  And not just ignorance when it comes to autism or ADHD, but any kind of ignorance.  I have no patience for stupid, or unsolicited advice.  All of my 'thorns' stem from people that have an intelligence deficiency, this includes members of my family (remember, I have a small 'blood related' family here in Canada, consisting of my dad, then Dayton and I.  Seeing how I think Dayton is the best thing since sliced bread, it's not him, leaving two of us left.  Another clue - it ain't me.  That leaves one person standing).

Now my 'roses...'
I don't speak of my 'roses' nearly enough as I should.  So I'd like to take this opportunity to do so...

- Dayton's grade four teacher...  Thank God for her.  I love her.  My son loves her, and tells me she 'gets' him.  Grade 4 has become the best year Dayton's had since kindergarten.  No phone calls home to complain about Dayton's behavior.  No 'novellas' like last year.

- Dayton's educational assistant.  Looks like she doesn't put up with his bossiness.  He doesn't control her or have her for lunch, and yet she's so tiny!  I am so grateful to have an educational assistant vs. an 'aid.'  I'm certain that between her and Dayton's teacher's efforts, they've managed to actually have my son learn how to read AND write!  Hooray!!!

- Dayton's guidance counselor.  I know...  Her and I have NEVER gotten along, and I always felt as though she was judging everything about me, right down to my face.  While this year the two of us have had limited contact, the contact we have had has been much more positive then in the past, and she's done a fantastic job researching air travel, preparing an interactive social story for Dayton to be more at ease to fly (remember, he was afraid of going on a plane because it may crash, but thanks to her hard work, he was quite at ease when the time came to travel).

- Dayton's resource teacher...  You know, even though the last two years have felt like I've lived in a literal hell, she was the only person that never had anything negative to say to me about Dayton.  She smiled whenever she saw us, especially at Dayton, and every time she saw me, she made sure to tell me how much she loves my babe.   I wish I knew her better.

- Grandpa Paul and Grandma Kathleen...  I don't even know where to begin with these two...  I love them and respect them as my own parents, calling them mom and dad.  Not only did dad cut short his business trip to come and be with us for grandpa Jerry's funeral, but the two of them sent us money to help us out financially knowing how difficult it was to financially not only make the trip to BC, but how difficult it was going to be for the next couple of weeks getting caught up on bills and meals.  Needless to say, we're not having much of a Christmas this year.  We won't have the cash to buy presents...  But, we will still have each other, and that's what makes Christmas, not the 'gifts.'  We are blessed to have grandpa Paul and grandma Kathleen in our lives, and blessed to be allowed to call them mom and dad, and blessed to have their love.  Dad spent a week consoling us about grandpa Jerry's death, helping with the family as a counselor, and gave grandma Margaret a book his own mother wrote after the death of his father.   And...  he babysat my bio dad...  The biggest Rose in God's creation to my daddy Paul.

- Cousin Evan and his wife Kim.  Whenever we come to Regina, they open their doors to us and give us a place to not only stay, but feel included in their family.  They've just received a blessed addition to their family, little Stensen, a bouncing baby boy, and I'm just absolutely dying to meet this little guy.  My next trip to Regina will be spent mostly with him, as I intend to give the mom and dad a night away from home to do whatever they want.  I can hardly wait!!!  I've seen pictures of little Stensen, and he's a real charmer, just like his daddy.

- My friends S and J who willingly accept Dayton for who he is, and love him as their own.  Their children are Dayton's best friends after school.

- Dayton's grandma Karen.  She just has this knack for knowing exactly what my boy is thinking.  She knows the difference between his autistic moments and his moments of being a little monkey.  She understands how he thinks, and works within his parameters to get the best out of him.  I'm totally missing her as she's not coming back from Colorado, and I don't have it in my heart to break the news to Dayton...

- My CSS worker Diana Sanders...  I no longer live in her catchment area, and haven't for a couple of years, yet she's still here with me, helping me get the diagnosis for Dayton and constantly offering a helping hand.

- My CFSSuderman.  She's given me back my self worth as a parent, and assurance that no matter how many times Dayton's school has called CFS, I AM more than just a good parent, and I love my child, and I will do whatever it takes to get Dayton whatever he needs.  She's been my backbone when I couldn't handle the school's ridicule of my parenting and Dayton's behavior.  Brenda has given me back my self respect, and that is a huge thing.  As a parent, having your child's school call CFS is a huge slap in the face, and it shows just what they think of you.  Brenda was there for me, assuring me that I am not what they've made me out to be, and that I am a fantastic parent. 



Consider yourselves hugged,


Lou

What Do You Do All Day?!

I stole this from a friend of mine who posted this little skit on facebook.  It made me laugh and totally reminded me of my life, in the current state it is in...

A man came home from work and found his three children outside, still in their pajamas, playing in the mud, with empty food boxes and wrappers strewn all around the front yard.   The door of his wife's car was open, as was the front door to the house and there was no sign of the dog. Proceeding into the entry, he found an even bigger mess. A lamp had been knocked over, and the throw rug was wadded against one wall.   In the front room the TV was loudly blaring a Cartoon channel, and the family room was strewn with toys and various items of clothing.   In the kitchen, dishes filled the sink, breakfast food was spilled on the counter, the fridge door was open wide, dog food was spilled on the floor, a broken glass lay under the table, and a small pile of sand was spread by the back door.
  

He quickly headed up the stairs, stepping over toys and more piles of clothes, looking for his wife. He was worried she might be ill, or that something serious had happened.   He was met with a small trickle of water as it made its way out the bathroom door. As he peered inside he found wet towels, scummy soap and more toys strewn over the floor. Miles of toilet paper lay in a heap and toothpaste had been smeared over the mirror and walls.   As he rushed to the bedroom, he found his wife still curled up in the bed in her pajamas, reading a novel. She looked up at him, smiled, and asked how his day went.   He looked at her bewildered and asked, 'What happened here today?'   She again smiled and answered, 'You know every day when you come home from work and you ask me what in the world do I do all day?'   'Yes,' was his incredulous reply.   She answered, 'Well, today I didn't do it.' 

Why does this remind me of my life?  Well, maybe this couple had a child with autism?  Sounds like my house, for sure!

It just seems to me that since I've been off work, my life's been actually busier than it has been while working.  All the appointments that I've had, the advocating for Dayton in his school and with CFS on board advocating beside me, I've just earned two additional appointments a week, not including the behavior specialist and CSS worker appointments or Dayton's child psychiatrist appointments which take place once a month.  Check my post on How Autism Changes One's Life for more info on just how many appointments happen for a family with an autism diagnosis...  Then I get home in time to pick Dayton up from the school bus, and he wants to play outside.  I can not leave him unattended for even a second, which means I'm out there with him.  By the time Glen comes by after work, I feel super guilty because he's worked all day, and now he has to make supper.  On the odd occasion, I'm able to BBQ something and convince Dayton to play by the patio so I can make supper and still keep an eye on him and his friends.  

There are days where I feel like I need to take a day off.  I just feel overwhelmed.  I wish I could lay in bed all day and let Dayton do as he pleases, but that's just not possible.  I have however taken advantage of the sofa and my kindle, allowing him to watch TV or play a couple (or a few more, or a lot more) video games so I can "catch a break" and read.  Naturally, Since I got myself my kindle, I've downloaded 11 books on education or autism...  so, even reading, I'm not really "catching that break."  Let's not even begin to say how much time I spend blogging.  It's as though I've replaced my passion for curriculum work with blogging, LOL.  I just can't seem to settle down.  Then I wonder what Dayton's problem is...  Poor kid never stood a chance between Glen's and my own genes.


There are days (most days) where my home looks like someone broke in but didn't find anything worth stealing.  I do try to keep up with it all, but it seems as possible as shoveling snow during a snow storm.  There's always someone behind me "helping" me not be bored while they're away during the day.  While I appreciate their concern for my boredom, I wish they would be less concerned with my boredom and more concerned with their own.


And then Glen arrives, looks around and asks "so, ummm, what did you do all day?"

At the end of the day,  I'm just grateful for the little things in life: medication, naps, and multiple personalities to help deal with it all.   

And on this note, I bid you a farewell for the long weekend my friends.  I'm going camping ;)
Wendy promised to take care of you all for the weekend, and I promise to have more to write on Monday.  Let's hope I have some interesting topics waiting for me in my email box, so email me with a request on the topic you would like me to discuss.
autism.diva.help@gmail.com


 Consider yourselves hugged,




Lou



 

CFS, Friend or Foe?

Many of us think of CFS (Child and Family Services) as the devil who comes and takes our children away, but did you know they offer other services?

Turns out they can be used to advocate for your children in their school!  I had no clue!

Do to Dayton's behavior, his current school has called CFS twice in the last year.  It's super embarrassing, and as I cried and threw a temper tantrum only a parent who's been in this horrifying position can appreciate, the worker sitting across from me sympathized with my situation.  Upon hearing what the school had to say, then listen to my incoherent babble and interviewing Dayton, the file was closed immediately.  Before leaving their offices, the worker asked me how she could be of help to Dayton and I, and of course my first answer was to find us a new school, a school that specialized in helping children with autism.  Of course, her answer to me is an all too familiar answer most of us hear when we ask our selves where to find a school that can appreciate our little ones pattern of thought.  "I'm afraid there just isn't any such school in Winnipeg...  But, I do have another idea..."
"I'm all ears!!!"
"How about we find a worker who will advocate for Dayton within the school system?"
"Seriously?!  You do that?"
"Yes."
"Sign me up!!!"
And she did.

In less then two weeks I got a phone call from a worker who was a temp, but offered his services right away.  He came to my home, and I asked Dayton's social worker, Diana from children with special needs and disabilities to come join us for our first appointment.  I mean, CFS was coming to my house, and they're the devil, right?  I needed someone at the door to stop Satan if he tried to take my baby away, and Diana is afraid of no one.  At least I think...

Anyways, the appointment went super well!  A little uncomfortable at first, and I was totally, brutally honest with the guy, I told him it's strange working with someone who could potentially come in my home, not like my smile and take my baby, but he assured me CFS wants to work with families to keep families together.  Another thought he had offered me was that having CFS come to Dayton's IEP meetings at the school shows I have a relationship with CFS and the school can not use CFS as threat when I'm bringing CFS to them!  I liked this guy.

He hooked me up with some counseling, which I thought I didn't really need, but you know what?  I think most of us with kids on the spectrum need someone to talk to, someone who will listen to us without judgement, and someone we can vent at.  We all love our kids, no doubt about that, I would give my life for Dayton's in a blink of an eye, but there are days where my patients runs on empty, and I just need a break from having to explain every single thing...  Just a little, tiny break... 

It was during this counseling that I learned that someone from the school division that has an understanding of autism should be involved in the IEP process, and furthermore, should be included in the IEP meetings!  I've never had anyone from the school division included in the IEP meetings, and the only people present were the principal, school guidance counselor, the resource teacher and then of course Dayton's team:  his behavioral specialist I work with at home and of course Diana, Dayton's social worker from children with special needs and disabilities, and let's not forget me, his mama.  I don't go to a school meeting without these two ladies, as I need their support to make it through a meeting with this school.

One more thing...  they have family support workers!  Depending on your income, they may charge you for this service, but since I'm on sick leave from work, our worker isn't charging us.  The family support worker comes to our home once a week for an hour and a half.  She provides us with information and is a sound board for me.

By having a relationship with CFS, I'm walking away with an advocate for Dayton in the school system, a counselor for myself, a proper IEP meeting where the school is accountable for what happens at school, and a family service worker.  None of these things would have come about without my CFS worker.


Another plus, every email I get from the school and respond to, I forward to Brenda, my CFS worker.  Everything is documented by her, so if there are any issues, she will take care of them.  She's so strong!  And if I have a concern with the school and email then, I make sure they see Brenda's being emailed as well.  I get a response from the school immediately.  Brenda's email address carries a lot of weight behind it. 

Friend or Foe?

For more information on what services they offer, follow this link: /index.html http://www.gov.mb.ca/fs/pwd/index.html.
To contact the Family Support Coordinator, call 204-944-4369.



Consider yourselves hugged!

Lou