Kate Warren

First off, how about a cute picture?  And that one is just about as adorable as they come.

So many things have happened lately that seem to be "out of the blue."  Normally I wouldn't mind.  I like blue.  But lately the things coming out of it are not so great.

The major issue is that my baby sister has cancer.  There are other things going on, but that's the only life and death one.  The good news is that it's a type of cancer that is usually non-aggressive.  The bad news is that when they went in to take it out, they may have found more.  We're all waiting to see, which is all you can do.   She's young, and generally healthy, so the prognosis is good overall, but it's still scary for all of us. 

My two fully autistic sons are transitioning out of a therapy program that has been part of their lives for more than four years.  We're working on figuring out the next steps, which may include us developing our own program as there's not a lot in our area, resource-wise.

Meanwhile school is now officially fewer than two weeks away!  Oldest son will be in eighth grade, middle son is starting middle school (that could be fantastic or awful), third son will be in fourth grade, and our daughter---the baby of the family--starts Kindergarten.

I'll be getting back to a regular posting schedule soon, and doing interviews and guest posts on other blogs.  I hope you'll join me in my cyber-travels.

Kate

Dear people,

At least I assume it's only people visiting my site.  I suppose cats might be using our internet connections while we're asleep, but I doubt they would find much of interest here.

I've made it through the first two days of Camp NaNoWriMo and I am currently ahead on my word count.  My attempts at tent building have failed thus far, but I do not despair of hope.  I will find a way.  Perhaps I should borrow some duct tape from one of my fellow campers.  

My cabinmates are wonderful.  We chat regularly and have entered the Cabin Challenge under the team name of Marshmallow.  The idea is to reach a collective word count, and so if one of us falls behind another can write extra to help the team.  I have received much encouragement from the other campers in Cabin Marshmallow.  I sense new friendships will blossom during this camp session.

The story is progressing as well.  I think the plot will really pick up now and a finished draft may well be within sight. 

The food has been ok, and I have not run into any poison ivy yet.  I have not gone swimming in the lake, for two reasons: 1. I don't swim; and 2. there are rumors of vicious monsters that attack your plot, dragging it down and putting holes in it, twisting and turning it until you can't recognize your own work.  I don't consider myself particularly superstitious, but I figure it's better not to chance it.

I'll write again when I have a break in activities.  Hope all is well for you.  Give Aunt Bertha a hug for me. 

Yours sincerely,

Camper Kate


P.S. Please remember that April is also Autism Awareness Month.  As a mother of autistic children, this means a great deal to me.  The world is sadly lacking in understanding of this disorder and cruel words, even when clearly spoken out of ignorance, can hurt our children and those of us who love them.  Please find some time this month to learn more about autism, or to share what you know with another.  Thank you.

Discharge was Tuesday and what a day it was.  Ben started drinking, which is why we were able to come home.  Our chauffeurs (and by that I mean my Dad and my sister) arrived early and the paperwork wasn't done.  Ben got very upset about having to wait to go.  He threw a massive tantrum.  It took the three of us, plus his nurse (who thankfully had worked with autistic children before) to deal with him.  Poor Ben.  Also poor me.  Got some new scratches and bruises as a result of the meltdown.

The ride home was largely uneventful.  And the homecoming was great.  Everyone was happy to see us.  A neighbor brought over dinner so we wouldn't have to cook.  Things went well until the next day.

We've all been through a lot.  I'm still very worn out and Ben is not liking the changes in his access to food.  In addition, his medication is not up to its previous level.  He had one tantrum that first day, but the real problem was me.  I'm so anxious about making a mistake.  I really need to chill out but that will take me a while.  My husband pointed out that I'm not nearly as concerned about his diabetes and what he eats.  Of course he's not eight years old, or autistic.  Husband can take care of himself to a point.  Ben can't even begin to do that.

The last few days have been pretty good.  He did get into a food we had left out because he'd never shown any interest in it.  That did not help his blood sugars, but we knew they would go high as soon as his appetite returned and he started following his meal plan.  He came home with a conservative dosing schedule for his insulin because he still wasn't eating normally yet.  Tomorrow I will make the first adjustment to his dosage.  Not a big one.  We're only changing by one unit up or down at a time.  And only one dose of one insulin.  Given that all of his numbers have been higher than goal lately that means at least four days of adjusting before we see better numbers, because he's getting two shots, each with short-acting and long-acting insulin.  Don't worry, they educated me about this.  I passed with flying colors.  The doctor's were calling me teacher's pet.

Had a meeting with some of the school staff to explain the basics about the (very few) changes.  His snack will have to be limited and the time can't change based on the day's schedule.  He starts back on Monday, after his first appointment with the new doctor.

The other kids are having their own issues.  The oldest is fine.  He understood what was going on better than the others.  Next one down is having his reactions to my being gone now that I'm home.  Refusing to do his homework, not wanting to get out the door for school in the mornings, acting up a bit.  Pretty normal reaction under the circumstances.  And the little one is just plain clingy.  That will last for a while yet.  She asks to be picked up a lot, and follows me around more than usual.  The dog is very happy to have us home and gets nervous whenever someone goes out the door.

I'll post again sometime next week.  Not doing Six Sentence Sunday this weekend.  Not sure when I'll be back to it, but this first weekend back it's more important to spend the time with my family.

Kate

You might not know this but there are autistic children who have problems with aggression.  I'm not talking about bullies.  Autistic children aren't capable of bullying, in fact they are often the victims of bullying.

There are several theories on why some autistic children are aggressive.  A recent study has found that some factors make no difference, they include: level of functioning, level of intelligence (as measured by IQ scores), the education level of the parents, gender, low income.  Pretty much all the things that tend to be indicators in the general population are non-indicators for autistic children.  The only thing they know for sure has something to do with it is repetitive behaviors, also called stimming.  

I know this issue intimately because I have a son who is aggressive.  He is the most affected of the three boys (meaning his autism is worse than that of his brothers).  In general he is a happy, laid-back, loving kid.  But when he gets overwhelmed he sometimes loses control.  It's hard because he's only eight but he's tall and strong for his age, nearly as strong as his father who grew up tossing hay bales around like they were frisbees.

I have scars leftover from scratches and bites.  I've been kicked and hit, and had things thrown at me.  So has almost everyone in the family.  He's been exceptionally gentle with his little sister and the dog.  But even they get in the way sometimes.

Whenever our youngest son goes into a meltdown priority one is make sure his sister is out of the room, then see to the dog's safety.  When possible we try to get him into a room that is set aside as a safe place for him.  There's nothing in there that we can't replace if he breaks it, and nothing with which he can hurt himself.   We never know for certain when he will lose control, but he always cries and apologizes when he comes back to himself.  This is not something he wants.

We do know what sets him off but he is inconsistent about it.  He doesn't understand why he can't go to his grandparents' house on a school day.  Most days he is fine with being told no on that.  Once in a while, the disappointment is too much to him.  

Too much sensory stimulation can set him off as well.  That is difficult because he actually seeks out the sensory input that many other children on the spectrum would avoid.  

He does stim and hates having his stimming interrupted.  One of his stims is throwing things into the air to watch them fall.  I mentioned in a previous post that all the flour and starches are locked up.  This is why.  He loves watching powdery things fall on the floor, and on himself.  Another is rewinding videos/DVDs.  This one is pretty common among ASD children.

Our fears about our son and his behavior include the very real possibility that at some point in the future we will be unable to care for him.  He needs almost constant supervision and has for some time.  We are doing everything we can to try and prevent his having to go somewhere else (a treatment home or an institution, scary words for a parent).  The thought of losing him makes me cry.  I remember him as a sweet little baby.  I know he doesn't want to be like this.  And I know that if he had to go away he wouldn't understand.  There isn't anyone here who wouldn't miss him every day, but we will do whatever is best for him, whatever will help him.  There is hope that if it does happen it will be temporary.

Many parents face these same situations and fears every day.  Not everyone has the wonderful support team that we have.  All of the therapy team, doctors and school staff have been wonderful.  We read stories about autistic children being abused at school and we thank God that our boys have never had that, that such amazing and caring people work with our sons.  

One last word.  This is the last day of Autism Awareness Month, so I ask you again to please be aware.  If you see someone out in public with a child who is acting up, please stop before you think ill of the parents, or give them a dirty look, or worse yet say something unhelpful.  That child may be autistic.  That parent may be struggling not to burst into tears.  It is a tough life and each of us with children on the spectrum have felt the condemnation of strangers when our children act unusually in public.  We feel inadequate and sometimes even blame ourselves for things that are beyond our control.  We are just like other parents.  We could use a smile, or a kind word.  Sometimes that will be what helps us get through the rest of the day. 

Thank you for reading what was a difficult post for me to write.  

Kate

April is Autism Awareness Month.  As my regular readers know, I have three boys with autism spectrum disorders, and one daughter without.  This makes life interesting, to say the least.  Kids on the spectrum like to have everything the same all the time.  Alas, life is not always like that.  The simplest thing, like changing from winter coats to spring jackets can cause major headaches.  I've got one who won't wear long sleeved shirts...ever.  He also can't be in the room with an unfinished bowl of cereal (seriously, he will throw up).

When I tell people about my boys they often ask "when do you have time to write?"  The answer is "whenever I can steal a few minutes."  The other answer is "November."

My oldest has Asperger's Syndrome.  The next one down has High-Functioning Autism.  Then the youngest son has Mild to Moderate Autism.  The easiest way to explain the difference is that we're trying to get the younger boys to talk more and the oldest not to talk as much.

Currently it's our youngest son who is the biggest challenge.  He is tall and strong for his age, and has aggression issues.  He is improving a bit every day, but needs constant supervision.  He's bright, and cheerful and loving.  He's also the reason why all flours and other baking ingredients must be locked up (he loves watching things fall).  He only goes to school for two hours each day right now.  And he has at times run off.  In autism this is called "elopement."  Of course we families have another term for it, "scary."  Like I said, life is interesting. 

Our family is really very lucky though.  It's hard to remember that some days, but we are.  Our boys are smart and affectionate.  There is no epilepsy or retardation.  There is hope for the future, because they are all making progress.  They adore their little sister, and she loves them right back.  She will grow up more sensitive to those who are different.

It's a difficult life, but it is also rewarding.  We don't go to ball games or zoos.  We don't take vacations.  The park or a restaurant is still a gamble for us.  There is even one family member who won't invite us to her house more than once a year.  None of that matters when one of my boys looks up and says "I love you Mom" or hands me a flower he picked for me.  It's not the life we expected, but we can still find joy in it even amidst our fears and challenges. 

On to the awareness part.  If you don't know much about autism, please take this month as an opportunity to learn.  It's not just Rain Man (which I have to admit I've never seen).  It's not bad parenting, as many, many people still say.  It's not one thing either.  Each child on the spectrum is different and has different challenges and symptoms.  There is speculation that some of the greatest minds in human history were on the spectrum: Albert Einstein, Thomas Jefferson, Jane Austen, the list goes on and on.  Different can be challenging, but it is not always bad