Wednesday, November 27, 2013

Bring on the Accronyms...ABA, OT, ST

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 these goals is proving, well, easier said than done. This is in major part due to the fact that our daily family routine is still not running smoothly. So we end up just maneuvering hour by hour rather than sticking to our daily plan. I need to really work on this.

Especially since our new schedule also includes two sessions a week of ABA therapy through the local university's Autism Program for both Kit and Zak. Each attends an hour on Monday and an hour on Friday every week.

Zak's instructors are working with him toward these goals (for now):

1) independently working through a set schedule, especially when it contains mostly non-preferred activities

2) becoming aware of his tendency to interrupt, and learning to cope with waiting and properly entering a conversation or gaining attention

3) increasing his tollerance and strengthening his physical writing abilities because getting his thoughts from his mind out through his body, specifically in the task of writing, is especially exhausting for him

4) helping him learn to walk beside another person instead of in front of or behind as this will help strengthen his social reciprocity

As he gains independence and mastery over these others will be added.

Kit is working on these to start:

1) gradual separation from me (she does not have this problem with Daddy)

2) gradually working on interacting  back and forth with the instructors

3) language and play skills

Kit had a hard time and was very overwhelmed by the initial assessment. And the third visit she almost completely shut down and started obsessively eating the m&ms that were supposed to be her positive reinforcers. I cried after that visit.

But then Daddy took her the next few times, and as suspected, she fully engaged, to the point that at her most recent visit she went with the instructor to the work room all by herself, and did the whole session without Daddy in the room! Amazing, but a bit heartbreaking for me.

I'm taking her again this coming week, and we'll see how it goes. I think this girl simply delights in keeping everybody on their toes!

We've also had two visits from the speech therapist, approximately eight weeks apart, during which time Kit's language has literally exploded! The ST remarked that what Kit has needed all along was occupational therapy. But she is still available to keep assisting wherever needed or as challanges arise.

I can't help but feel that if Kit had gotten OT at the beginning when I first requested a referral that perhaps she never would have lost her speech in the first place. Frustrating.

But we can only move forward, so that is where we are headed.

Wednesday, November 20, 2013

CAT!

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 doesn't need surgery anymore!
 
 

 
He checked out otherwise perfectly healthy. And we couldn't be happier for him!
 
 
 

He is very well loved here by everyone. But, perhaps, both of them being toddlers gives Kit and Ivan an extra special bond.
 
Every morning when Kit wakes up, she used to say "MOMMY!", now she squeals "CAT! CAT!"
And as soon as Ivan hears her he jumps over me and clamors to her, stands up against her chest and rubs his cheeks against her over and over, licking and purring like a little motor. It is the cutest. Thing. Ever!
 
 
 
 

Monday, November 18, 2013

Don't Dissect My Rainbows!

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 saw how integral this "condition" was to who my son is. There is no line to be drawn between him and autism. It's not in anyway clear cut.

So perhaps you can understand the sting I felt over and over in my research that this "disease must be cured". My son is NOT diseased!

And these feelings did not change a few months later when it was confirmed that my daughter was also autistic, in some ways more profoundly than my son.

So I did not take advantage of Autism Speaks' package for parents with a newly diagnosed child. Nor have I subscribed to any other programs or websites that promote that view. I usually cease even reading further if that position seems to be propagated throughout.

I do not, however, know what it feels like to experience the severity of having a child who cannot or will not engage with his family, reciprocate their love, or not progress on schedule or attain essential life skills such as toileting, dressing, and feeding. That is an intimacy with autism that I am grossly unqualified to represent. So I do not mean in any way to demean others or be dogmatic in my view.

I do not believe autism can only be defined by a set of criteria in a diagnostic manual. I believe that criteria is a beneficial tool to be sure. But it is no more a conclusive definition than a tool bag defines a carpenter. Sure one can deduce by the contents of said bag the occupation of its wearer. But that by no means completely defines the individual. The same is true of autism, it means something different for each individual.

For some it ehances, for others it isolates, for many it allows amazing gifts, and yet for all it presents obstacles and challanges. It can be all or very few of these things and every little bit in between. But every single one of these people affected is unique and precious.

I have had two children officially diagnosed on this spectrum, and a third who may not get an official diagnosis but certainly manifests many traits though perhaps less disruptive than her siblings. And each one is a gift in my life. While I wish them to have the greatest opportunities to thrive, I more importantly want them to be loved, for who they are. So we will continue to seek therapy, and research, and the expertise of well informed professionals in order to help my children shine. And we will work hard to help them use their strengths to fortify their weaknesses.

But I will always choose to see thier light. Their brilliant rays. And I choose to be their prism. To serve to bend their light so that others can see the brilliant colors of their hearts. They are little rainbows dancing all around us!

Funny thing about rainbows. They often look like they begin and end, but this is an illusion, usually created because of our point of view. But in reality they have no beginning and no end, and it is nearly impossible to tell where one color ends and another takes over.

So too, with my children on their "spectrum". I can't tell where my children end and autism begins, they are an amalgam, working together, symbiotic. To remove one without fully understanding it, would damage and alter the other. And I'm not a buyer at that price.

We often have to weather the storm in order to see the rainbows. And so our family will, because when the skies clear for even a moment, I get to see three!

That is just a glimpse of what autism means to me.

Sunday, November 17, 2013

Growing Grace(fully)

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?)

Wednesday, November 6, 2013

A Bitty Kitty for Kitty Bitty

 
 
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 them with coconut oil. He finally was able to open them, but it was obvious he was blind, they were far too damaged. Probably had been even before they first opened. We couldn't quite determine his age, but I was pretty sure he was a boy.
 
My mommy instinct kicked into overdrive, and by thunder, this kitten was not going to die on my watch!
 
He was miraculously flea free, so after a thorough bath, he remained constantly warmly wrapped in a towel cuddled up on one of our laps or in my makeshift sling (primarily to prevent Kit from messing with him while I had to do things like cook and wash dishes.) Overbearing reminders were issued repeatedly to wash hands or use sanitizer.
 
 
 
She loves this kitty soooo much!
 

 
After much research, Victor and I discussed the cat's fate. After relating what I had learned about owning a blind cat, as well as all other considerations, we came to an agreement. I was taking the cat to the vet the next day. If the vet confirmed no chance of sight, then we could keep him. 
 
This might sound odd, but our family is in fact a much better fit for a blind cat than a sighted one. He is by default a strictly indoor cat, which is essential for us to own a cat because we have too many wild ones around here that can cause problems with fights and disease. Since he can't see outside what he's missing, then his desire to go outside is enormously reduced. And should he end up finding his way out, he is not likely to stray far from the door as everything would be so overwhelming and unfamiliar. Aside from that, someone is almost always home, we don't move furniture often, and we have lots of love to go around!
 
The vet indeed confirmed absolute blindness, but that was the last of her concerns at the moment. Determining his age at about four weeks, his severe dehydration and malnourished body led her to feel he had very little hope. She gave him a fluid injection, a deworming treatment, a prescription for antibiotics, special high calorie food and kitten milk, and said "if he makes it till Monday, then maybe he'll make it till Wednesday, then maybe till Friday. Schedule him for a recheck in a week and we'll see."
 
She was pleasantly surprised to see him with a plump belly and infection free a week later. Playful and curious.
 
 

 
He might need another round of antibiotics before he is big enough to have a better chance of surviving surgery, another several weeks at least. The longer we can keep him relatively infection free and growing, the better his chances of successful surgery.
 
His eyes are scarred and bulgy, but otherwise, you can't even tell that he is blind. He walks all over the house. Playfully attacks the dog's tail. He's completely litter trained (he still needs practice covering it up completely, but he's a baby), he navigates around obstacles without actually touching them, he finds his way to me no matter where I am in the house, he's frisky and playful, he loves to cuddle and his purr gets louder everyday.
 
 

 
In the last two weeks he has weaned from kitten mlk to soft food to moistented dry, and soon will be on plain dry, learned to walk, learned to use, but more importantly, find, the litter box, and has already learned the basic layout of the house and how to get to his food, water, and sleeping boxes, or one of us when he desires play and company. And I have no doubt that he knows every one of us by smell and sound. He can tell the difference between me walking across the floor and Victor or Zak.
 
And he is brave! He stalks the dog and goes about his business even with Kit picking him up and moving him every three seconds. He is gentle in his play. And as much as I have to attend to his eyes and feed him meds, he is merely irritated at it, but he doesn't lash out or attack.
 
When it was decided that he belonged with us now, we spent days trying to find the name everyone felt best fit him. Fifty-some-odd suggestions and four days later, we finally found...Ivan. We all just sort of knew it when we heard it, it just fit.
 
The kids fought over who would clean the cat box. Grace won. I don't expect that level of enthusiasm to last forever, but it's sweet while it's here.
 

 

 
The kids each snuggle with him for part of their reading time at night. And then he comes to spend the rest of the night with his Mommy. A snuggly cat beats a heating pad every time, even if he is only half a pound!
 
He's not entirely out of the clear yet. We are very aware that his health could crash even before surgery, though that seems less and less a likelihood. But, he's still very small and the risks associated with anesthesia are still quite high. But we will see what time and good nutrition can further accomplish.
 
In the meantime I love seeing his belly fill out and his muscles grow and, best of all, running my fingers along his spine and feeling less and less of each bone as he fills out.
 

 
And I am so proud of my kids. Despite his eyes going through nearly every conceivable phase of "eew", the kids have never acted repulsed or  disgusted. They have a compassion for him which is so deep it's amazing. They see his eyes and worry only if he might be in pain. Beyond that, all they see is how cute, sweet, and in need of love he is. I couldn't be more honored to know such good people.

They make my heart so full.
 
 
 
 
 
 
 
 

 
 
Interestingly, I just looked up the name Ivan. I knew it was Russian. But it turns out it is the Russian form of John, which means "God is Gracious." Kind of a sweet coinciedence.
 

Sunday, November 3, 2013

Family Food DIY : Single Serve Oatmeal

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 start we can give them! So as a family, we are willing to take some cuts in order to purchase higher quality food. We drink mostly water. Rarely buy juice, beef, or all-in-one type prepared foods.
 
Another example: We have significantly reduced our milk consumption in order to be able to purchase organic milk. We actually have a milk ration here. But I'm much happier knowing that which we do consume is better for us. I still wish I could have easy access to raw milk products, but that is simply not a reality right now, so this is the next best.
 
We spend a large portion of our food budget on fruits and vegetables. This facilities the Family Food Rule: every meal must contain at least one fruit or veggie. At least once a week we even try to have a completely meatless dinner.
 
We try to have a few fresh items, apples, salad, and bananas, always on hand. The majority of our produce however we purchase frozen, or canned in 100% juice if possible. (I have a major gripe that the retailers I frequent often only have the small cans of fruit packed in juice. That means that we frequently need 2-3 cans minimum for a meal or snack. I would LOVE to find huge cans of juice packed fruit to stock up on and save money in the long run! Gonna have to hit Google again.)
 
Anyway, this summer I made it a goal of mine to stock up and freeze during the berry sales. And we did get some good sales, but not as many as I had hoped. But I do have almost two gallons of blueberries, a gallon of raspberries, and four or five quarts of strawberries!
 
In my attempts to make my job a little easier and reduce our grocery bill even more, I'm instituting what I hope will become perhaps a weekend tradition, at least until I don't have a pack of wolves anymore. And Victor is my comrade in arms.
 
Our mission is to cook, over the weekend, enough whole meals or major parts of meals to get us through the week with much more ease and a lot less time in food prep. Also, anytime I am making a soup, stew, sauce, beans, or filling, that I double or triple the recipe and freeze the remainders.
 
This weekend I made a huge batch of beans, divided, and froze them. With ease any morning, I can take the container from the freezer, microwave it just enough to loosen the contents, then drop it in the slow cooker. I can add veggies for soup. A package of pre-browned frozen ground meat and seasonings for chili. Or simply cook and serve with cornbread or rice.
 
I also browned and divided three pounds of ground meat and made, and then froze spaghetti sauce and taco filling. Both of these can easily be stove warmed or microwaved while the rest of the meal is prepped. This reduces major time and clean up!
 
We recently invested in a roughly 17x11x4 inch roasting pan. Victor is head over heels in love with this pan! He can cook 3 cups dry rice, 5 lbs frozen veggies, 16 drumsticks, and 4 chicken quarters in less than two hours, with room to spare!! That's two complete dinners plus the filling for a casserole!! He calls it ManCooking...I call it cooking for a pack of ravenous wolves! Seriously though, I love how happy he is to help with the cooking! And...complete awsome bonus, the biggest pan for the best price just so happened to be an orange Rachael Ray pan to match my set!! Win! Win! Win! Like a dozen wins!
 
 

 
(My orange pans were an anniversary present from Victor a few years ago, that I had been wanting for a couple years before that, and I truly enjoy cooking more with them! They are bright and gorgeous, and make what ever I cook look fabulous! I could certainly get along with out them, but I really enjoy having them!)
 
Getting back on track with my pack. Another tidbit about my kiddos, they like warm meals. They are ok making their own sandwiches, but they prefer tuna over pb&j, and egg salad even better. This is neither practical nor economical to execute more than once or twice a week however. So I need to have meals that are 1.) Cheap 2.) Less likely to elicit unhappy groans, and 3.) Kid freindly to prepare.
 
Enter homemade self-serve packages. This idea occurred to me while watching Grace easily warm up some pasta in the microwave last week. I realized that I can make bulk meals and then freeze them in individual servings. The kids can select one, run the bag under water to loosen the contents, cut the end off, place in a bowl, and microwave. Voila! No junk food, minimal mess, and completely kid doable!
 
(I know the debate surrounding microwaves. I can't fight that battle right now. I have bigger fish to fry. Please don't judge.)
 
Eventually I would like to make choices which include tuna (or any) casserole, healthier mac-n-cheese, rice-n-meatballs, rice-n-beans, plus burritos, mini pizzas, and soups. At some point we may seriously need to consider getting a bigger freezer! :)
 
This week, I made oatmeal. My family loves, loves, loves oatmeal. Which is fantastic, because it's one of those really healthy foods that also happens to still be wonderfully cheap! So I made a huge pot, let it cool enough to handle, then filled a gallon size bag. I snipped off the corner and used it like a pastry bag to fill smaller plastic bags. Some I left plain, and some I added frozen blueberries to. It filled ten bags, at a little over a cup each, which is technically probably two servings, but remember, my kids are wolves.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

The other half we ate for lunch and dinner, which showed me that I need to make even more next time, because, ten bags just aren't going to last very long! But I'm not complaining, I love hearing my kids beside themselves with giddy excitement over homemade oatmeal, split-pea soup, or meatloaf! Yeah, take THAT Big Food!
 
 
Happy start of Autumn everyone!
 

What if This Was Your School...or Your Child?

 


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.