hide-n-(sensory)-seeking

A year ago today, I nervously hit the publish button for the first time. I don't know if my writing here has helped anyone else out there, but being able to organize the events of the past year and sharing them here has helped me. At the very least, I hope that some of you out there have been able to glimpse into our chaos from time to time and maybe feel like you're not the only ones! I honestly did not expect things to be this hard this year. I expected lots of challenges. But a year ago, I felt invigorated, ready to work for my children and my family. I still work. Very hard for them. But the events and stresses of this year truly have drained me of every sort of energy. I feel like my fire has snuffed to a barely glowing ember. It's still there, but it's harder to get it sparking again. It has been literally an avalanche of stress. With the hits getting heavier and harder as the year progressed, and my ability to block the punches, weaker and weaker. Yet, life ...

There are times when tragedy strikes and swift action is needed. We surge forward driven by adrenaline and instinct in order to prevent, aide, or repair. But then there are the kind which strip us of all power. We are helpless to change, prevent, aide, or repair. We can only grieve. And continue the constant march forward. There is no stopping. No pause. And the most important thing to do is simply to love. Love more. Love hard. In the wake of such, I am drawing my children a little closer. Studying their faces longer. Extra hugs, more kisses. And more remembering. I reflect on who I was when they were born. And who they were. Each one was so distinct in their personalities from even before they were born. They are each so incredibly powerful and rich in love, passion, and spirit! I have been reading some of my earlier letters to them that I hope to give them when they are older. With each year I have allowed life to keep me busy enough to sort of let this drift to the wayside...

Over the years I have seen my family grow and change. I am number four out of five siblings. Our Mom is blessedly still a big and important part of all of our lives. We have gained, and sometimes lost, spouses, in laws, grandparents, friends and children. Life has taken us all in many directions, and not always in the ones we anticipated, or even wanted to go in. We have more hilarious memories than we can count. But we have some very sad and painful ones too. Every one of us is very independent and sometimes ridiculously stubborn. This shared attribute can be an invaluable strength, but sometimes our own enemy. We've helped each other, annoyed each other, and sadly, hurt each other too. I don't know if that is ever completely avoidable. Pain, like change, in this life seems guaranteed. And right now our family is experiencing pain. Deep pain. Each in different ways at different depths and dimensions. But it is a hurt without a vo...

      "He saw the world in pencil."          That is what my son said as he admired his cousin's drawings.   I've been srtuggling to write something since that awful day two weeks ago. But nothing I put down can say everything that needs to be said. Nor can it give credit, and, dignity, and depth to the feelings of everyone who cared for him. So I'm not even going to try. I'll just show a glimpse.   In a way, it's fitting that art, his art, is really the best way to say goodbye. He was't just about his art, there was much more to him. But it was where he and I had our best connection, I felt.   He didn't talk to me about his feelings or big ambitions in life. We didn't always see eye to eye, and even sometimes went head to head. But, from time to time, he showed me his art. And it was these times, that I could best see his heart.   It was here that he could...

Tonight I played the piano for a little while. It has been several months since I have been able to play. I wasn't sure if Kit would let me, but I sat down to do it anyway. She did let me. She didn't cry. And when she came up beside me, she didn't make me stop. And when she climbed onto the bench next to me, she didn't take my hands off the keys. She just sat next to me, playing on my phone. Content. Happy. That's a big deal. She went through a period last year where she would cry if I played, and would pull on me, my arms until I stopped and picked her up. Or until Daddy came and took her into another room. At first I thought it was just that she wanted to play with me. So I would put her on my lap and play. But she would get mad and take my hands off the keys. So I thought that she just wanted to play. Sometimes she would plunk on the keys. But mostly she would just try to turn the pages of my music. Soon it just wasn't worth the drama. I play to re...

Scene: Victor and I are getting ready for bed.   Victor: "Wow! It's nice to see the floor in the bedroom again. Thanks for working in there today."   Me: "Your welcome. See...I can get lots of things done. I'm just running on man time, that's all."   Victor: "Ohhhh...that's what happened. I rubbed off on you, huh?"   Me: "Guess so."   Long pause.   Victor: "Well, I spent all day in my biking clothes."   Me: "Did you ride?"   Victor: "Nope."   Me: "Ohhhh...so you wore mom clothes today."   He looks puzzled.   Me: "I wear yoga pants every day. Have you ever seen me do yoga?"   We smile. :)   Good night friends.

Classic pink, long legs in white. She glides into position. Chocolate hair, all braided tight. Calm, her disposition.   First a leap, and spin she may. Fingers in the middle. A dainty skip, and soft sashay. She nearly flys a little.   The kitchen soon becomes her stage. Her spotlight, rays of sun. Imagines dreams beyond her age. And stories that are spun.   Her music only she can hear. The lovely lilt of flutes. As dancing shoes, her feet will wear. A pair, of puddle boots!            

  Kit was full of surprises this morning.   1.) She brought me the hair box and picked out two pony tails asking me to put them in her hair! This is awesome. Last week was the first time ever that she tolerated her hair done for more than just a few minutes. But she kept them in for about four hours Tuesday night, through two car rides, and our entire weekly Bible Meeting. I actually has the great pleasure of asking her if I could take them out as we put on her jammies. That was a huge big deal! So today was equally exciting to have her requesting to have her hair done again. And she again wore it all morning, all the way to, during, and home from ABA therapy, playing outside, and I think she even fell asleep for her nap with them in!         She looks so crazy adorable that I left them in even after she got toothpaste in her hair. Which leads me to...   2.) When I came out of the bathroom after getting...

For several months now Kit has been passionate about the alphabet. And by passionate, I mean obsessed. I've actually seen her sign in her sleep!   At first it was just a few letter signs, over and over.   Then it expanded to obsessively watching the episode of Signing Time that teaches the alphabet. (Though she is obsessed with almost all of them, she does have intense favorites that she insists on for certain periods.)   Then she wanted me to sign it to her repeatedly. I wasn't allowed to speak at first, just sign. I guess she found my voice distracting as she was diligently concentrating on signing it with me.   Gradually, I was permitted to speak and sign.   When her speech started to reemerge in August, saying the letters as she signed was one of the only things she would consistently vocalize. I would say and sign the  letter, then she would say and sign it.   After only about three tries, she could say most of the lett...

Long before we finally started "real" therapy with Kit we created our own home therapy remedies of sorts. These activities and games have had a big impact on all our kiddos. And most of the time it never even feels like "therapy". While Kit has technically only been observed twice by a speech therapist, she has had her own mini-ST for months in the form of Grace. Grace is a master at making Kit use her words for EVERYTHING! Grace won't give an inch either, if Kit wants it, then she's just going to have to ask for it. With real words. And Grace will even correct her pronunciation should she slip up. In fact for a period of time, Kit probably said more words with Grace than any other time or situation. She gladly accepted Grace's challenge, even while choosing to stay silent for Victor and I, not that we weren't attempting the same prompts. Physical and Occupational Therapy primarily fell under Zak's jurisdiction. He, not at all surprisi...

The last two months have been about as calm as a school of piranhas in a feeding frenzy. Yeah. I won't get into the grisly details about our visit from a stomach bug, or bore you with our loosing battle with allergies and house work. I'll skip right to the major changes. We have finally started therapy. We have had almost weekly visits from an Occupational Therapist who possesses a miraculous understanding of sensory issues and how connected they are to every other body and mind function. She does a lot of teaching me about specific reflexes and sensory integration, and each week gives me new protocols to use on Kit. One of the biggest things I learned? I was right on that her sensory issues are a major cause for many of her challanges, especially where her sleep and speech were concerned. But I would never have been able to address her issues on my own. I am working toward administering the protocols every day, or at least some every day, but real life application of the...

Good news!   Our sweet little rescue kitty, Ivan, had his check up with the vet Monday. He's a bit of a celebrity there, everyone is so excited to see him, pet his healthy kitten chunkiness, and check out his eyes. They are as happy as I am that he is growing and healing so well.      He got his vaccinations, which is a big deal, because the vet originally never saw him making it that far.   He gained 1 1/2 pounds since his visit three weeks ago!          And best of all, she was really excited by how amazing his eyes looked. All the swelling is gone, no infections, and he can open and close both his eyes now with no trouble whatsoever! The eyes are healing and as the scar tissue continues to grow, it provides more and more protection against further infection.   She said that he no longer is in danger from the damage, and so as long as they do not develop recurring and uncomfortable infections, then he...

When I first found out that my son has autism, I, like many others, went home and hit the internet. Hard! That evening I turned off my laptop, exhausted, a little tearful, and a lot angry! But not for the reason most people think. I was not angry that my son "has" autism. Rather, I was angry because over and over again autism was characterized like a disease. One that needed to be irradicated and destroyed. But that in turn meant destroying my son! Sitting in his psychologist's office as she walked me through the DSM IV's criteria for Asperger's, I suddenly saw all the little pieces fall into place. And the picture they formed was of a brilliant, inquisitive, loving, tender-hearted, dark haired, hazel eyed, slightly freckled, boy who I love so much my heart sometimes feels like it's going to explode! While my eyes that day were opened to the neuological wiring that he was born with and manifests at times differently than "normal", I also clearly ...

Scene: Our living room, preparing to watch an episode of Star Trek. Victor: Grace, can you turn on the VCR? Grace: The VSwhat? Me: He means the DVD player. Grace: Oh! Victor: What'd I say? Me: VCR. She has no idea what that even is. (Does this mean we are getting old?)

    Three weeks ago the big kids pulled a starving kitten with a raging eye infection out from under our house.        His birth mother, a local ferral cat, had given him up to his ailements, choosing to devote her energies to her remaining kittens.   The kids were in tears, litterally bawling over his sure demise, begging me to save him. Knowing that his mother had already given up, I felt responsible to at least get him into the hands of a vet, though I suspected he might not make it.   Had the kids not pulled him out when they did, he absolutely would not have made it another day.   He was so tiny he literaly fit in my hand!   I sustained him on cow's milk simply to help get some fluids in him for two nights until I could get him to the vet, though my research showed kittens can't get what they need from cow's milk. And I bathed him, soaked his eyes with warm compresses, and treated ...

I have no idea what it's like to have children who "eat like birds".   My children eat more like a ravenous pack of wolves! And they are home all day, and for every meal.   So, next to our house payment, our grocery bill is our biggest expense. (Technically it is our biggest expense because we overpay our house note each month.) We include paper products, cleaning supplies, pet supplies, and general use household items in this part of the budget, including occasional clothing items, just FYI. We call it our Food and Needs Fund.   Since our wolves eat so much, we really try to ensure that the majority of what they consume daily is real, wholsome food. Raising healthy eaters is one of the best investments we feel we can make as parents, not only to spare them the health and weight challenges that we have as adults, but also because it is so hard to break bad habits later, and we want their brains and bodies to have the best possible st...

  These punishments aren't even allowed to be used on the worst of criminals without the strictest regulations. Yet untrained and unsupervised teachers can use them at will with their students and are not always under obligation to disclose them to the parents. Keep in mind that there is a large number of autistic children who are non-verbal, or have very limited communication. They can't tell us what happened today at school.

So Wednesday, our air conditioning stopped conditioning our air. Thankfully this happened now and not in the middle of August! It still easily made it to about 88 degrees in here yesterday though, so we took the day off from our school/house work. None of us work well when we are grouchy and hot.   Instead, Grace pretended to open a spa and she and Kit rubbed lotion on my feet and painted my nails, to quote Grace, "sparkly blue"!   Then I gave Zak permission to play his phone while we girls curled up next to the fans and watched a tear jerker chick flick.   Later after it had cooled off a bit I moved one of the fans to the kitchen and washed up the dishes and chatted with Victor. I, naively, believed that Kit was in the living room watching Olivia.   I was wrong.   She was busy in the kid's room. She came to the kitchen to show me her pretty piggies.       She had found the jar of silver gli...