Today was one of those days where you think that the hours will simply slide into each other, easily, quietly, without major merit, or major event. Tonight’s dinner for example, it was nothing spectacular, just a simple meal of breaded shrimp, fish sticks, mashed potatoes and corn. Typically, N would only have eaten the fish sticks, and after putting a small amount of the other 3 items on his plate we would have finished making him some cheesy noodles to accompany it. But, and this is where the evening changed to special, he ATE the mashed potatoes! For a child with such a self-limited diet, this was huge! Last week was the first time he didn’t have a meltdown from seeing a food he didn’t want to eat on his plate. Prior to then he wouldn’t have eaten anything on his plate until the food he didn’t want was removed, and he would have been desolate until you removed it. But between the trips to the delicatessens, and farms we’ve been working steadily with him on accepting new foods, not even trying them, just accepting them on his plate. I thought it would take much longer for him to be willing to try one of the new foods on his plate. But tonight he said he didn’t want the mashed potatoes, so we told him “then don’t eat them” and left it at that. A few minutes later, he was cautiously dipping his fork into them, and actually trying them. He ate all of them on his plate and asked for more! It was wonderful, and certainly made this day special for me. It marks a definitive progress in expanding his diet. It shows that the methods I’ve utilized to help him, really are helping him. The feeling of accomplishment I get from that is huge. I look forward to watching his continued progress with meal times. I know he won’t try everything every single time, I know that it’ll take time, but I see that glimmer that what I’m doing is working, that I was in fact reading him and his signs correctly, and that my intuition on how to help him in this area was correct, and that makes this day awesome.
This is NOT what my world is like at all! For Autism Speaks to have created this is appalling.
My niece requires an adorable butterfly shaped pillow. Her current one has seen better days (it IS used every day after all!) But good luck trying to find one in stores or online that doesn’t cost a fortune! After over an hour of searching online the cheapest I could find was $40, BUT I had to live in the states for them to ship it to me. The cheapest one that would be shipped to Canada was $107.47. So off to Fabricland I went Below is my first one finished (I plan to make a few for her as Christmas gifts)
The bottom where the wings do not touch is meant to be approximately as wide as the person’s neck, (slightly wider so it’s not restrictive, but still close to their neck so it can be as supportive as possible)
To make: Half a yard of your favorite material, Hypoallergenic stuffing and some thread.
Draw 2 butterflies on the wrong side of your fabric, keeping in mind that the wings should be larger than the person’s head. (If you can’t draw a butterfly, find one online print it and enlarge it until you have the right size to trace)
Make sure you keep the butterfly’s head almost level with the wings to help support the person’s head.
Cut out your butterflies, place together wrong side out, sew almost completely together. Leave yourself the width of your hand so you can turn it right side out and stuff it.
Turn right side out and stuff. Then carefully fold the open seams inwards so it doesn’t fray on you and sew together.
Finish by sewing the lines of the body, as they help to keep the stuffing in place which keeps this pillow functional after it’s been washed!
That’s it my dear readers, and now you know how to make this lovely and unique gift which is great for sleep apnea, facial dystonia, and correct head positioning for someone that has difficultly doing so for themselves.
I presented my “Informing the Village” workshop in Barrie today. Near the end, an attendee said to me that they wanted to be like me. That they wanted to get to the stage of positivity and acceptance that I have in regards to my Autistic sons. I was honored, and flattered when they said this. But I think the level of positivity I have in regards to them is a direct extension of my own personal perspective on life in general and parenting in specific. I assumed from the get go that parenting would be hard. I watched the most amazing mother on this planet devote her life towards the betterment of her children. I watched as she did whatever was needed to ensure we got what we needed to be happy, it made me view parenting in a very specific way:
Being a good mother is the single hardest task any woman can ever undertake in her life. It means forever putting someone else’s wellbeing and happiness above your own, even when your exhausted, or sick, heartbroken, or stressed beyond measure by any number of things that have nothing to do with your kids, even then you have to put them ahead of you. There will be times that your heart feels like it’s breaking, at the pain they can cause you, at the helplessness of watching them hurt when there is nothing you can do but sit quietly beside them offering your unconditional love and presence as they struggle through their own trials. There will be moments of extreme frustration with yourself when you wish you could do more, for them, or with them, to help them, to guide them. You have to let go of the notion that your child is a direct extension of yourself, because they are not. They were a part of you and they always will be, but having a child isn’t the same as creating a puppet. You don’t get to decide what they will look like, or who they will intrinsically be. You can teach them morals and values, perspectives and ideas, but eventually they will choose their own paths in this world. It’s up to you to guide them to be the best person they can be, and to give them whatever specific tools they personally need to thrive in this world. But the tools one child might need, are different from another, and they will be different from what you needed as a child as well. Let go of the media’s fake cookie cutter ideals of how a child should be, and embrace the child you have. Realize that they have worth exactly as they are, there is no need for you to try and force them to be anyone that they are not, because they really are fantastic exactly as they are! Maybe they won’t be the “jock” one of you hoped they would be, maybe they won’t be a “bookworm” like yourself. Perhaps they will hate playing the piano, or need a tutor for English.
But what if perhaps it’s more than that? What if they are classified as Special Needs. That’s okay, there’s nothing to mourn, you didn’t lose them. You lost the lie that our current status quo was all that was good and right and normal. Instead you’ve been given the opportunity to see just how fake of a statement that is as you watch in awe and wonder how incredible your child truly is. That is, IF you open your heart and mind to the knowledge that different from “normal” doesn’t mean less. Parenting is hard work no matter what, perhaps your child will need different types of support than you originally thought, that’s okay! Your job as their parent isn’t to dictate what they need, but to provide what they need based on their own individuality.
Being a parent is the most incredible journey that can ever be undertaken. There is more joy, more adventure, laughter, and a sense of fulfillment as you watch them grow that nothing can compare to. I am grateful for the blessings I have in my life. I am grateful that I get to help C, N, and G in whatever ways they need to grow into the best possible people they can be. To give them the tools they need (most likely all 3 will need a totally different set) to obtain their version of happiness in this lifetime. I’m here as a guide, as a teacher, as companion along their journeys, as a confidante, a sounding board, a caretaker when they cannot care for themselves, but I am NOT and I NEVER will be here to be their puppet-master. That’s not what I’m here to be, it’s not what any parent is supposed to be.
So choose wisely, choose to have a child only when you know in your heart you can do all of that, never before.”
As most of you dear readers know:
1) Between my husband and myself we have 5 children.
2) Our 2 boys are Autistic and behavioral therapy is NOT cheap.
So how do I make sure that there are presents under the Christmas tree? I’m going to tell you my favorite ways to make sure each child (and the adults near and dear to my heart) receives wonderful gifts they love without spending a fortune.
1) I make a lot of gifts for everyone.
From knitting hats and mittens in funky colors, to making purses, stuffed animals, quilts, hair accessories (such as headbands, and decorative clips) fabric books, skirts, pajamas, tutus, slippers, hot/cold packs, jams, candles, cookies, festive colored pastas and canned spaghetti sauces, chili, chocolates (with cream filled centres), paintings and more I really mean it when I say I make a lot of what I give each year. To help with that, I buy supplies throughout the year as they’re on sale and I TRY to start making things ahead of time so I’m not in a rush come the festive season (typically, I fail at starting early and so I am mostly just sleep deprived as I stay up late every night creating in the few weeks before Yule lol)
2) I price match everything I can, and when I can’t I buy in bulk!
I know, it sucks being behind the person with a ton of flyers who’s price matching when you yourself have a ton of things still to do in the day, but when I can get really great quality thread that sews denim for less than half price, I’m totally going to take the time to do so! Then there’s the buying in bulk aspect. Yes you really do spend less if you buy a larger quantity at a time, and that is wonderful news if you’re going to make a lot of one item. Such as buying take out containers from a restaurant wholesaler, decorating the lids with the kids and volia, lovely containers filled with delicious baked goods for various people.
3) I utilize groups like Freecycle.
Freecycle is one of the most wonderful things to happen to the internet! I know people have been swapping for countless years but still I really love the ease with which I can post what I have that I don’t need anymore and someone will come to my house to take it for themselves. I also love that I can in turn do the same! I once saw a posting for a block of candle wax and I thought, hmm I’ve never tried to make candles, but I’d love to do so! So I responded and I was gifted with 50lbs of paraffin wax! (A 10lb slab is $73.99 at our local craft store!) Then I borrowed some books from the library on candle making and ta da! I had lovely presents for those I cared for! (Well the adults at least)
4) I’m not afraid to try new things, even if it means messing up.
The first stuffed animal I made for my daughter was terrible. The head was lopsided (it was a horse, and it honestly looked like it had a stroke) the hooves were crooked, I’d forgotten to sew the ears inside the seam at the top so they were really odd and floppy, more like a bunny’s. But I laughed at this terrible creation and then looked carefully at where I’d gone wrong and how I could correct it for my next one. My first dress was all kinds of wrong as well! And of course there’s the incident my own mother still likes to remind me of when I tried a 1920′s recipe for cream centres for chocolates, and it didn’t harden and so instead it slowly leaked all over my balcony and made the biggest, gooey mess I’d every seen! (I’d put it on the balcony to cool faster, and it did, it froze in fact, but not before it was everywhere) Again I laughed as I cleaned, and as I made the next batch. (I went on to nailing that recipe, but it took time and practice)
5) I utilize reward points, free discount cards and the like.
I use Shoppers Drug Mart Optimum points, Air miles, plum rewards, husky points etc. One of my personal favorites is www.swagbucks.com I use their search engine instead of google and some searches mearly return my search results, others garner me “swag bucks” which I use to redeem for online gift certificates for places like Amazon.ca. So far in this last year I’ve earned $60 in Amazon gift certificates which I use to buy the kids books they love
6) I shop online as well as in store.
Why, well there’s the gas it saves, but also because I can shop from more places (which often means better prices as long as you know the “average” price an identical item would typically cost) One of the places I love is www.Ebay.ca I love the auctions, and I always bid the highest amount I’m willing to spend on that specific item at the start. Then if it goes over that, I refuse to bid again. Sometimes I get them, sometimes I don’t. But I do it early enough in the year to not worry if I don’t get all of the items I’ve bid on. Plus you can get some really, and I mean REALLY amazing things on there. I recently found a pair of cufflinks that were identical to the ones my deceased father had on the day he married my mother from the same jeweler in England that I was able to snag for my brother for this coming Christmas. (Don’t worry, while his charming wife reads my blog he doesn’t so he won’t know about them lol)
So those are my top 6 ways for creating special holiday gifts. What are your top ways?
If you are from the area I would love if you joined us for my free workshop: Informing the Village this Thursday in Barrie, Ontario.
This interactive and practical workshop will explore how to inform and educate others about your child’s Autism Spectrum diagnosis and what it means for them specifically. The free workshop will explore which ways are best for each situation, and how to ensure you inform others in ways that make them excited to be a part of your child’s village. While this workshop is focused on informing others from a parents perspective, it’s a wonderful fresh take for those working with persons on the spectrum to gain a better understanding of what questions they need to ask to provide optimum care!
Register through here
For those of you that haven’t read it yet here is a link to the press release that Autism Speaks released on November 11th 2013 about their summit being held from Nov.12-14: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
While I am a Canadian, what is happening in the United States in regards to organizations like Autism Speaks effects us all. Why? Because of lines like: “We’ve let families split up, go broke and struggle through their days and years.” Actually, my husband and I are more in love now than ever, but thanks for assuming that we’ll get divorced because we have 2 Autistic sons! Our mutual dislike of washing dishes causes more issues for the both of us than our sons being Autistic. Seriously, literately, it’s true. Go broke? Yes in the United States many forms of therapy are not covered or are so difficult to get covered that most families can’t access them in timely manners. Instead of using their funds for warning us that we’ll get divorced because our kids have different neuro-pathways, why not use those funds to provide grants for such therapies or to subsidize actual places that provide those therapies on a sliding scale payment plan based on proof of income and expenses? I have a secret to tell you, one that apparently has been forgotten by these people: parenting is HARD! I know, it’s a shock isn’t it? Being on call 24/7 for a minimum of 18 years, putting someone else’s needs and wants above your own every single day, figuring out how best to help a unique individual become the best person they can be and then following through even when it’s hard and your tired or sick or whatever isn’t easy. Guess what, that’s what every single parent out there is supposed to be doing anyways, regardless of the neuro-pathway configuration of their child!
“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
This is autism.”
Try to escape or hurt themselves, yes those two are scary and both are things I’ve had experience in dealing with my own son, but seriously, climbing the furniture? Stripping off their clothes? Raiding the refrigerator? Those are “horrors”? Are you kidding me!!! Just this morning my neuro-typical daughter decided that a 10kg bag of flour needed to be dumped all over the kitchen, and I mean ALL OVER while I was in the bathroom. Did my eldest son have a issue with climbing the furniture? He sure did, so did his neuro-typical friend. I simply took him rock climbing to give him the same stimulation in a socially acceptable manner. Stripping off their clothes? Have you ever met a child that wanted to keep their clothes on? Do we as adults not relish the days we can have pajama days? The reason is simple, it’s more comfortable. If keeping clothing on is an issue, why not work out what fabrics the child enjoys the touch of and sew some clothes for the child? If one doesn’t have the time or knowledge of how to make clothes that’s okay, there are plenty of seamstresses that can be hired to do it for you. OR if short on funds and a seamstress is too expensive, why not contact a local high school and work out with the home ec. or fashion teacher (or whatever it’s being called currently) that some of the sewing projects done by the students are clothes for the child/ren in question? Again there are TONS of solutions if you’re willing to look for them, and as a parent that is what your supposed to do: HELP your child to thrive! And there are plenty of parents of Autistic children that do exactly that, every single day! To say that we are existing but not living is utter horse manure!!!
My entire world is better because of my children! Each one is perfect exactly as they are. If I were to be offered “a way to eradicate their Autism” I’d refuse, wildly, passionately, whole-heartedly refuse! Why, because to do so would be to kill the child I have and replace them with someone else. I don’t want different children. I want the ones I’ve been blessed with.
I want my C exactly as he is, my bugaboo. Who turns notes into movements so fluid and sure they bring tears to my eyes. Who runs as fast as he can, trampling anything in his way to get to his siblings when they cry. Who tucks his chin into himself, as his lashes lower and his lips turn up every time he says “Thank-you” when I tell him I’m so proud of the young man he’s becoming. Who sings offkey when listening to Green Day. The boy that looks at me with liquid pain running down his face when he’s gone past his limits and it hurts more than he thinks he can bear to be so overloaded, the boy that doesn’t always understand social settings or skills and still whispers in my ear “Is that a joke mum?” when he’s not sure about what someone said. The boy that first taught me what it was like to love unconditionally. The boy that first taught me how to be a warrior that fights relentlessly: FOR him.
I want my N exactly as he is, my turkey. (He was born on Thanksgiving) Who looks at me while trick or treating and says “You fix everything” Who loves glitter paint, and awkwardly sticks his face in his brother’s and tries to ask him why he’s crying when C is upset. The one that loves Lightening McQueen anything. Who meticulously peels every wrapper from every crayon in the house. Who only just started to be able to deal with receiving kisses sometimes when not in the peaceful repose of sleep. Who isn’t potty trained at 3 years old, and who won’t be for an unforseen time. The boy that taught me true patience. The one that showed me that just because it’s not reciprocated in the ways I was used to didn’t mean love doesn’t exist, and to accept the ways he was comfortable expressing his love.
Both my sons are perfect, exactly as they are. As is my daughter. All three provide different parenting challenges, and all three provide moments of joy so great I look around to see if the very air around us is sparkling as bright as my heart from it all. So don’t EVER tell me I’m only existing! Don’t ever tell me that my children are a burden that I must bear! For the REAL burden is the knowledge that organizations such as Autism Speaks is held in high esteem by so many. The REAL burden is not my children, but your malignant lies and misinformation spreading like a cancer throughout our society, diminishing the ability of others to see the gifts I have been given in the shape of 2 sons.
“How long before they break?” Seriously!? I will NEVER be broken because of sons. Actually, I have been already. The mold of the selfish maiden I once was prior to my eldest son’s first breaths has been broken. In her place is a mother. A woman of untold strength, given to her through the transformation into motherhood. A woman who knows how blessed she is to be the guide to 2 such incredible individuals on their journeys in this lifetime. A woman of sharp enough mind to see past your “we feel SO bad for those stuck with such a terrible fate as being a parent to an Autistic child” to the reality that you don’t know a damn thing about MY sons. YOU are blind to the beauty of their existence, and by direct extension, the beauty of MY existence because of them. A woman of strong enough character (or just plain loud to openly state: Autism Speaks NEEDS to be SILENT!!!
Remembrance Day is almost over, but the sentiment it is meant to express lives within my heart every day. It’s a day to remember those that have fought for our freedom. Those whose blood and sometimes very sanity have been shed in a quest to keep their family, friends, neighbours and even strangers safe; from those that would oppress. From those that would annihilate others that are different then themselves. I was grateful to those that served before I became a mother, I was taught how my freedom had been garnered through the brave sacrifice of others. I loved history as a teen, I found reading it at times appalling (some of the horrifying actions done in the names of advancement, religion, and so many other excuses that were used to justify atrocities) and at other times it was heart-warming, and inspirational. I learnt at a young age that no soldier chooses for the wars to start. But they do choose to be the virtuous, honourable men and women that fight, and defend, and stand strong in the face of atrocities so vile the majority of us couldn’t even handle one day of, never mind several months or years of. They do this, they live through it all, just so we are spared those very same atrocities.
Then I had children. One summer afternoon I watched as my eldest (then just 3yrs old) rode his tricycle on the side walk by our apartment. I watched as the sun glinted upon his hair, the warm breeze carried the scents of someone’s barbecue, mixed with rich blossoms and his laughter glittered upon the air like crystals of joy as he finally got the hang of peddling. It struck me at that moment how lucky I was that others had fought so I could experience this moment as only one can when there are no threats to the very peace and freedom that affords such a moment. Later that night I went home and looked up how to write to soldiers. I found that as long as I knew a general area (operational address) I could send letters any time of year and that a Canadian soldier that does not receive mail would be given the letter. I have sent letters since then, and until every single member of our Armed Forces is home I will continue.
I still send letters throughout the year, because I don’t just remember when the red poppies start to appear. I remember every day I am blessed with the freedom to raise my children the way I see fit. I remember every day that I can walk down the street without fear of enemy forces invading our land, and the ensuing horrors that would be wrought. I remember every single day. As we all should. No, as we all NEED to.
During today’s workshop “Informing the Village” I was asked if I could recommend any news footage or medical journal articles for family members to read that were reputable. Below are a few that I would recommend:
CBC News has this article entitled “Quick Facts About Autism” where they speak of how it is a neurological condition, something that truly is hard-wired into the brain:
I love this mother’s story that The National covered. I enjoyed how positive she was in focusing on his talents and strengths:
A very informative fact sheet about Autism from the National Institute of Neurological Disorders and Stroke:
A 12 minute radio interview with Temple Grandin when she was in Montreal from CBC. I love how she advocates for teaching real life skills at early ages: