Light it up Blue!

Welcome  to the Light It Up Blue For Autism Awareness Blog Hop! I've changed my blog colours to blue to match, and I'm super excited to be part of this hop organized by two fellow autism moms, Veronica & Tenia! Visit either of their blogs for the blog hop list and to find out about all the fantastic generous sponsors. 

So why am I hopping today? I am the proud mother of two boys with autism. Connor is now 16 and Riley will be 15 this month. I won't go on for a long time because there will be a couple hundred stops along the hop, but I will tell you a few things about my boys.

Both were diagnosed in 2003 - Connor in March, Riley in December. We had known for some time that Connor was 'different' and we were waiting for a diagnosis. Riley's development pattern was so very different from Connor's that it wasn't until Connor's diagnosis that we started to realize that Riley was on the spectrum too. My cousin has autism, and my half-brother does as well. I researched autism in university, I volunteered in high school with several autistic students - and what I can tell you? Every person with autism (and how their autism presents) is as unique as fingerprints. 

Shortly after their diagnoses, the psychologist told me that Connor would be indistinguishable from his peers by grade 3. He said that Riley would likely never interact normally with other children. The reason I mention this is to tell you that predictions made for your child's future are absolutely useless. Imagine someone had said to your parents at age three what your life would be like today. Connor could not blend in if he tried (and he doesn't want to). Riley has several friends that come over to visit on a regular basis. 

All that is not to say that we don't struggle - along the way both boys have also been diagnosed with anxiety and depression. Riley also has OCD. Connor has a speech impediment and dysgraphia. They work very hard, every single day, and  they are thoughtful, kind, considerate young men. 

First day of school!

Now on to my card :) I figured a blue love card would be just right.

Supplies: stamps from Reverse Confetti; Memento Tuxedo Black ink; Peacock Feathers distress ink; heart buttons from Dress it Up; paper from MME; heart Nesties

Thank you so very much for hopping with us today - mwah!

xoxo,

Jessi

Jingle Belles Holiday Traditions

Holiday traditions...there are just so MANY! How do you choose? Something I have found kind of fascinating over the years is how our traditions changed & evolved after having kids. There are loads of fun things that I did with my mom & sister growing up that I don't do with my boys (like opening stockings on Christmas Eve!) that I absolutely love, but just don't work with the myth of Santa Claus. And yes, both my teenagers still believe.

I'm pretty sure you all know by now, lol, but both boys have autism. Connor is 14, and Riley is 13, and although Riley seems to be a little doubtful, Connor still writes his Santa letter faithfully, and absolutely refuses to listen to any speculation that the big guy doesn't exist. We worried a lot about that as they went to middle school, and no matter what they hear, they make up their own minds. The pull of the magic is just too strong for them, and I completely support that. They have their entire lives to be adults, but precious little time left to enjoy the magic of being a child on Christmas morning.

Our Christmas day has evolved greatly from the time they were small. Decorations were a problem for a long time. Even something as simple as the library being decorated was enough to throw Connor off - instead of looking at books he'd have to pace along the shelves & touch all the books, as if to reassure himself that there was still order somewhere. We couldn't put presents under the tree before Christmas Eve until they were about 9/10 years old - they wouldn't open them, but the presence of presents was something they became so obsessed with that I would have gone absolutely bonkers. We still don't go crazy with decorating. The boys help decorate the Charlie Brown tree the first day after school's out for the holidays, and it's done however they like - I put the lights on & make sure that it won't fall over, and the rest is up to them. When they had trouble with eating a variety of foods, we'd let them have hot dogs on Christmas. In our view, Christmas magic is in the enjoyment of the day - especially in watching our kids enjoy the day - and if they love hot dogs & not turkey? That's ok. They've grown to enjoy the traditional meal, but I'm glad that we were able to let go of our ideas about what made Christmas "perfect" and focused instead on what would make Christmas perfect for THEM. These days that includes making sure that each pet has their own stocking filled with treats from Santa, a special breakfast, and relaxing. We don't rush around, we don't require a lot from them, and we sit back & watch them enjoy their new stuff.

So, my holiday tradition cards for Jingle Belles are with stockings & ornaments - two of the traditions we've always kept to!

Supplies: Stockings die cut from Kaisercraft; Peacock Feathers distress ink; sentiment from MSE!; Corner Chomper

Supplies: ornament & bow die cuts  from K & Co; sentiment from PTI; Stampendous Pirate Gold EP; Versamark; red rhinestones from Dollarama 

Thanks for reading my ramblings :)

xoxo,

Jessi

World Autism Day...and little red wagon #126

On my soapbox for just a minute - I know I say in my profile that autism will come up often, but honestly, I try not to have it take over. Frankly, autism is pretty much the REST of my life. Besides lighting the blue porch light yesterday for World Autism Day, I wasn't going to mention it, and then this morning I read Joan's post at Paperlicious. Empathy really is worth cultivating. The classmates who look out for my boys have hearts of gold. Only one of my boys has been accepted by his peers to the point of having friends over or being invited to birthday parties, but it's not the big events that matter most. It's the kids who help when the teacher can't, or the kids who stick up for my youngest when he's being bullied (sadly, a common occurrence).

New statistics have been released on the prevalence of autism in the United States - now 1 in 88 children. Five times as many boys as girls. That means 1 in 72 boys. That's nearly 2 percent of our boys, and although there's lots of research, there is very little practical help for any but the wealthy. And here I'm talking about Canada. In fact, schools are cutting more and more, and even though already both of my children are struggling with their supports being cut, there are more cuts on the horizon for the next school year. The emphasis is on early intervention, but to grow successful adults, development and intervention do not stop at age five.

As an example, Connor did not speak coherently until age seven. Everything I'd read prior to that spoke of the 'golden time' for language acquisition being before age 5. He didn't receive any speech therapy once he went to school, other than a yearly evaluation - and what I provided at home. Do you give up on your child because there's not funding available to provide the right therapies? My wish for Autism Awareness Month is that these kids receive the support and education that they deserve. It won't happen, because it's expensive. I must say, though, that I'm tired of fighting the same fight year after year, only to see more of the bare-bones services clawed away. It makes the teachers' jobs harder, it makes my childrens' lives harder, and it makes me angry. It's a lot less expensive to provide proper support during school years than it is to provide full-time residential care for an adult.

(OK, off my soapbox now. I think)

Supplies: cloud paper from K & Co;
standard oval Nesties;
parachuting bunny digi from MelStampz;
sentiment digi from lazy daisy

This week's challenge at little red wagon is "Up in the Clouds", open until tonight. I love this little parachuting bunny from MelStampz! I cut some clouds out of the patterned paper & popped them up for dimension, and there you have it.

Thanks for bearing with me!
xoxo,
Jessi

Retail Therapy

A specially ordered card for a special little girl!
Supplies: Image from Mo Manning, Digital Pencil;
watercoloured with Distress inks;
letter stickers from Basic Grey;
Happy Birthday Outlines sticker

It's not nearly as gratifying as shopping in person, but I just placed a few orders yesterday for some Halloween and Christmas goodies. Now the stalking of the mailman begins....lol! I can't remember if I mentioned it or not, but last week we went to visit Grammie in Miramichi. The boys had a great time hanging out in the pool and playing on the trampoline, and Abby had a great time with free run of the fenced-in backyard.

Riley and Connor, the unicorn.

I had an interesting experience as well. Rob's mom lives near the high school, which has an open parking lot perfect for driving practice. I've had a couple of parking lot lessons, but it's slow going as our car has a standard transmission. So, driving over to the high school was my first time practicing in reverse, and my first time driving on the road. On the way back, in a 30 km/hr school zone, a car came up behind me. I was driving at 25, so Rob hit the flashers so the other driver would realize I was going slow....and the guy PASSED ME, in a school zone, on a curve, with oncoming traffic he couldn't see until he pulled up beside me. I nearly had a heart attack. Back to the parking lot for a few more lessons, I think.

Oh wait, pictures of Abby the wonder pup!

But I want to go in the pool too!

Snuggling with Riley

Look at those fluttery eyelashes!

Training took a few steps backward last week, so I turned to the books once again for advice on housebreaking. The puppy pads are gone (she started going wherever she pleased) and now Abby is in the kitchen unless she's invited. Since we started that, she's now gone 4 days with no accidents in the house. With the pads she wasn't indicating that she needed to go out at all - she didn't have to. A few more weeks to see how well she's doing, and then a deep carpet clean is definitely in order.

Supplies: Image & sentiment from Mo Manning, Digital Pencil;
watercoloured with Distress inks;
star gem strip from $store;
mushrooms & flowers from Walmart kit;
Sakura Stardust pen - for mushrooms & 'wonderful days'

I love this image, drawn by Mo Manning, and it's fun to colour. I love playing with her hair colour, and dirtying up the knees of her sweet overalls. I printed the images out slightly larger than usual, and I found with the second card that I liked the simplicity of the white space.

School starts tomorrow. {Gulp!}
I am hoping for the best, but bracing for the worst. So far there seems to be confusion, a lack of planning, and a lack of information sharing. Connor is supposed to be taking the bus to a new school - but the website has no information on bus stops or times, and after repeated phone calls even the transportation supervisor said he wouldn't know until Tuesday. Seriously? I can understand juggling the times, but you can't even tell us WHERE he's supposed to get on the bus? And the school itself couldn't (or wouldn't) tell us who Connor's homeroom teacher would be, or the names of any children in his class, apparently because even on Friday they hadn't yet finalized the class lists. So, with no aide, a massively anxious autistic child has to sit in the gym with 2-300 other nervous kids & listen for his name to be called, and that's how he's going to meet his teacher for the first time. What could possibly go wrong?

And Riley...I must say that I'm quite glad this is his last year in elementary school. The current administration seems to believe that information is a precious commodity, and that as parents we shouldn't have access to any of it. Riley will not have an aide this year, something I'd speculated about based on the number of layoffs last June. However, no one has officially told us. Part of me wants to wait and see how long it takes for us to be notified. Then again, last March or so both boys had their part-time aides switched, and we have yet to be officially informed of that.

It's beyond frustrating to have to fight every single year for services, only to lose them without notice. Both boys may very well surprise me and adjust perfectly - but chances are, just like the last several years, September will bring regression, aggression, and lots of tears and anxiety. We're already experiencing all of those. We almost lost our respite funding this year as well, because the boys aren't considered intellectually disabled. As it is, it's been reduced by 20%. What it feels like, is that we are losing resources because the boys are beginning to succeed. If they had a reduced curriculum, they would qualify for more help. The problem is, I can't make up for the deficits they have at home anymore. Speech therapy, occupational therapy, we've done that and continue to. I can't go into the classroom with them and ensure that they are able to do the work. I can't  regurgitate the entire curriculum for them at home to give them the one-on-one instruction they often need, and I can't expect that a teacher with a full classroom can take the time to do that either.

You know, I just thought of the perfect ending here - regardless of the song's actual meaning, the title works. "Wake Me Up When September Ends."

xoxo,
Jessi

Light it up Blue!

Just popping in briefly to let you know that Saturday, April 2nd is World Autism Awareness Day. The chosen colour for this day is blue - wear a blue shirt, put a blue light bulb on your porch, heck, maybe I'll paint my face blue. (OK, probably not). Even if your family isn't directly affected by autism, someone you know is. Everyone knows someone who has this disorder - and not every child is as lucky as mine are, to have benefited from early diagnosis and intensive intervention.

The statistics are scary, and you can find them anywhere. A more sobering statistic than the oft-quoted 1 in 110 children is to look at the statistic for boys alone: one in every 70 boys will be diagnosed with autism spectrum disorder. If you have kids, there will probably be an autistic child in the classroom. In my oldest son's classroom, there are 3 kids on the spectrum - in a mainstream class of 19. The entire school has probably 8-10 kids, out of a student population of about 225.

http://www.lightitupblue.org/

Have a look, share it with Facebook, Tweet it, raise some awareness. My kids & I would love to have some company on Saturday.




Supplies: Papers & brads from Basic Grey, "Hopscotch;"
vintage ad  & sentiment from Crafty Secrets;
butterfly diecut from K & Co;
flowers crocheted by me

Support really means everything - families can't do it without help. Thanks for reading!
xoxo,
Jessi