Saturday, December 13, 2014

Let's be friends...

How many of you are friends with your parents? How about with your kids?
For the past 5 years, I've been completely wrapped up in raising a little champion with special needs. Spending relentless hours a day teaching him basic skills that come naturally to 'Nero-typical' kids. He's always in "survival mode", and anything beyond that is basically out of the question, if not impossible. He's always exhausted. I'm always exhausted. 
Along the way, 2 1/2 years ago I had another beautiful angel. Though my husband and I always had fears lingering in the back of our minds, by 18 months of age we knew she did not have special needs. 
As she continues to develop into an autonomous little person, she demonstrates more and more every day that she needs me to parent her like that of any "typical" kid. But over the past year I've realized I don't know how to do that. So for the past 6 months or so I've been on a new journey: trying to figure out how to be a parent of a child without special needs, starting from scratch all over again. 
My quest led me to the book If I Have to Tell You One More Time... The Revolutionary Program That Gets Kids To Listen Without Nagging, Reminding, Or Yelling by Amy Mccreedy. It reiterated a suggestion my friend gave me 2 years ago: spend 10-15 minutes of one-on-one time with each individual child every day. The book takes it a few steps further, calling it "Mind, Body, and Soul Time" (I call it "special time" with my kids). She says to spend the time distraction-free in a child-like ego state focusing your entire mind, body, and soul into playing with your kid, doing whatever they want to do for 10-15 minutes. 
I've found this time each day with Belle is super easy and really fun! She just tells me what she wants to do, and we do it. 😊 It flows naturally. We color, play with blocks and 'build the tallest tower in the world', jump on the mini trampoline, or just run around the living room chasing each other and giggling. 
I've found that my special time with Philippe has been much more challenging. Truth be told, some days I don't even want to do it. Why endure 10 minutes of torture for both of us? Most days we don't even make it to 10 minutes because the time ends abruptly with a tantrum where he's either biting me, head-butting me, kicking, screaming, or crying. In her book, Amy discusses how the time should be led by the child- it's pointless if the parent spends the time teaching, parenting, or directing (meaning during the designated special time, any therapy with Philippe is out). I try to let him dictate how we spend our special time. One day for 15 minutes we opened, closed, opened again, and closed again, 3 suitcases nestled inside each other like Russian dolls. Another day we stacked, unstacked, and re-stacked the trays from my vegetable steamer. Another day we sat on the floor and pushed the same button on a toy over and over and over again. If I try to change the activity or even adjust it a little bit Philippe gets irate, resulting in a tantrum and terminating our special time. Some days I just sit quietly in the corner of his room and watch him do... whatever he's doing at the time, just sitting there in silence spending time with him. My 21st century preoccupied, technology-driven, perpetually-distracted brain usually gets board after 3 minutes and I move on to cleaning something or scrolling through Facebook on my phone, instead of spending time with my son. 
Today was different. Today was a miracle. Today was FUN! Philippe and I were sitting on the kitchen floor, just staring blankly at each other. I said a few unimportant words just to fill up space in the empty air. Philippe grabbed my knee and pushed it. He grabbed my other knee and pushed it too, studying the way my legs bent and moved. I became his puppet. He kept grabbing my knees, moving each leg from side to side, bending and straightening my legs. I was perfectly obedient for a few minutes, moving just how he wanted me to. Then, just to test his reaction, I bent my leg instead of moving to the side when he pushed it. Instead of getting furious, he smiled. I was his obedient puppet for another minute, then I straightened my leg instead of moving it to the side like he wanted me to. This time he laughed! Could it be... we were actually playing?! This continued for another few minutes. I think we actually made it past 10 minutes! These few precious moments will forever be a special memory to me. I feel like I actually connected with my son. We both laughed. We both smiled. For a few minutes we were friends. 




Wednesday, December 10, 2014

Family Pictures & Autism : What I Want To Remember

A good friend texted me this:

"Can you email me a picture of your family picture with Belle crying? My brother has a daughter with autism and she is always crazy for family pictures. I want to show his wife an example of how a family picture can still be adorable, maybe even better, when you work with it."

So I emailed her this:

We took over 200 family pictures and out of all of them, this one is by far everyone's favorite. The photographer was waiting and waiting- trying to get all my kids' attention, to get them to look at her and smile. I told her "just take the pictures. If you wait until they're all facing you smiling, we won't get a single shot." Thankfully, she listened to me and just started snapping photos, and we ended up with this awesomeness:


It is a PERFECT depiction of each of us 😄

After 2 photo sessions- each 1.5 hours long, my little boy is not smiling in a single picture (and we even gave him fruit snacks, which is a major treat for him!). Most of them he's not even looking at the camera, and if he is, he was making a silly or funny face, or had his fingers in his mouth.
The reality is, OUR life is messy. It's chaotic. It's silly. It's real! That's what I want to remember.


Guess which one of the kids in this picture has autism?



Last year we took our kids to Foto Fly at Thanksgiving Point. They have 10 minute increments you sign up for, and they guarantee in 10 minutes you'll get at least 1 good picture. I thought "yeah right. This is going to be a disaster!"
One of the adults (in our case, my husband) dresses up like Santa Claus from the beard down. Nothing covers your face- so your kids see you and are comfortable because it's you, and not some stranger. I think it even makes the pictures look more *magical* because you don't see Santa's face in it.
The cookies were supposed to be a prop, but my daughter (who does not have autism) was stuffing her face in every. single. picture. 
But I still think they turned out pretty cute!




I dread taking pictures! It gives me stress and anxiety and depression! Every time I think "this is going to be horrible!"
But a couple of years ago I had a distinct image in my mind. I picture my son as an adult, without autism, able to speak and think clearly, asking me "Mom, how come we don't have any pictures of me growing up?"
I imagine feeling VERY guilty and embarrassed, admitting to him "sweetheart, it was too stressful. Because you wouldn't look at the camera and smile, and we were so worried you would throw a tantrum, or cry the whole time, so we never took any pictures."
My son didn't ask for autism. We didn't ask for it in our family either (we are NOT those people that pray for trials to learn and grow and become stronger. Trust me!)
But should I punish my kid because he has autism? Should I shut him out from the world and lock him away from society and never take any pictures of him, or of our complete  family, because of it? No way.

Now when we get pictures taken I think "we just have to get through this. Yes, it will probably be torture for everyone. But we'll grin and bear it, and hopefully get at least 1 good photo... And Photoshop is amazing!"

Helpful suggestions: fruit snacks, bubbles, toys with noise-makers or blinking lights to get kids' attention at the camera, whatever works for your family. Plus there's always straight up bribery (hey, I'm not above saying "when we're done with this we'll buy you a new toy!" That gets some smiles), and a really talented photographer (that's skilled in editing- again, gotta love photoshop!), it also helps if they're experienced in working with kids (experience with special needs is a bonus!).
Shameless plug- if you live in Utah, my husband is a graphic designer (aka photoshop whiz!) that does photography too. Check out cute pictures of our friends and their kiddos at ImageDesignByMarcel. to see if you like his style:
https://m.facebook.com/imagedesignbymarcel?v=timeline&timecutoff=1250719055&sectionLoadingID=m_timeline_loading_div_1262332799_1230796800_8_&timeend=1262332799&timestart=1230796800&tm=AQCgK_e1l_PTp8Fn 

From the bottom of my heart, I really hope at least something I said helps you. More than most people, I get what you're going through, and it's not fun. But even the less-than-fun moments can be magical and beautiful, and sometimes they end up being the ones you want to remember the most. Good luck!

- Candice Cochegrus