Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Thursday, April 14, 2011

Spirituality and Autism

Ok, sorry - my blog has temporarily been taken over by the topic of autism, because my LIFE has temporarily been taken over by autism.

Spirituality is a huge issue in the lives of families dealing with autism, yet I find very little (on the internet and otherwise) addressing it. For the purposes of discussion I'm including anyone of any faith because I think it's very pertinent to our lives. There are 3 specific issues which keep coming up in my life, and I would assume in the lives of parents in a similar situation.

1. How does my faith in the Divine (in whatever form you believe) help me in my day-to-day life coping with autism and all its various aspects?

2. How do I help my autistic child cultivate a relationship or understanding of the Divine and how will I know when he/she "gets" it?

3. How does my spiritual community support me/my child in dealing with autism and educating others about it?

Upon leaving our last church, I found myself sinking deeper and deeper into a "dark night of the soul." Part of it was admittedly other factors in my life, but no small part of it was due to the utter frustration I was experiencing trying to keep my family involved in church, my own faith alive, and not losing my mind to the crazy schedule the whole thing created.

It was like being on a seesaw where I was constantly juggling my need for involvement with my family's need for down time together, along with the need of a church/sunday school program suitable for *all* the children. The "perfect church" at the time was 20-something miles away. Well...perfect on paper. Doesn't matter how good a church is on paper - if you have an autistic child *no* church that far away will work.

After a 6 month or so mental health break (breakdown?) from church we began the process of finding a new church. It was quite the hit-or-miss experience. After a while we gave up trying to get *all five* of us to every new setting - I became the Scout, who did an exploratory foray to each church, seeking suitability, both practical and spiritual. Would the service logistics fit our family? Did they have people familiar with autistic kids? Could they be flexible regarding Chris' needs and behavior? Were the people gentle and compassionate? Was the setting itself somewhat calm and the process of check in easy?

If it seems like those questions are selfish and picky, you have never tried raising a family with an autistic child in it. I realized that I *had* to be picky in order for us to have a chance at making a good fit in a church. One church was close, family oriented, a denomination we loved, had a great music program, and very active both within and in the community. And.....all children over the age of 5 were expected to sit through service. It worked for all of 6 weeks, I think.

A friend's church was very close, had a great children's program, lots of activities, familiar denomination, and....the check-in process took half an hour both in and out for our 3 children and was overwhelming for *us* let alone *them*.

And so it went -like Goldilocks - this one too big, that one too small, too many activities, not enough activities, no program for older kids, etc. After maybe a year and a half of fruitless searching - we've at least found one to attend, when, in fact, we can manage to get there.(See previous post about when you have a child with autism).

It started me wondering about how other cultures and faiths support (or don't support) families of kids with autism, and how they help those parents address the above questions. More on that in a bit...

When you have a child with autism....

So this is a continuation of yesterday's thoughts, mostly because it was *not* a happy homework night in our house last night. It got me thinking about how our lives (I assume) are so different from parents of only "normal" kids. And this applies to parents of girls on the spectrum too.

When you have a child with autism....

1. You live your life as though walking on eggshells, waiting for the phone call or the email that informs you of your child's newest strange behavior at school.

2. You get to play the "homework lottery" every night - the question of whether he brought it all home, whether he will actually work on it, and how miserable will it make the whole household that night before you have to give up and send him to bed.

3. You come to accept the fact that any meeting, church service, family event, or shopping trip may have to be cut short, postponed, or arrived at late while you pull the strings on the family dynamics just to get everyone out the door in a (relatively) calm mood.

4. You find yourself constantly having to explain/apologize/smooth over your child's unpredictable behavior.

5. You notice that in an effort to expose your autistic child to beneficial social activities (requiring extra time management) that yours have dwindled down to nearly nothing.

6. You cheer for every social victory, at the same time wondering what ravages puberty and teenager-hood are going to wreak on your sensitive-but-socially-clueless child.

7. You inwardly cringe whenever he brings up driving/college/marriage/family/career hoping and praying to God that those things will *be* in his future given his propensity for trying to argue his way out of doing anything and his almost complete lack of self-motivating behavior.

8. You constantly wonder if you'll ever know what is actually going on in that brain of his.

9. You wonder, as you watch him get bigger and stronger and deal with his unpredictable temper, whether at some point you will have to give in and take him to the doctor for medication - which you really don't ever want to do given all the horrible side effects.

10. You fear that the next "incident" he has at school will be the last and they'll suspend him and you'll have to home-school him (which is not the ideal situation for anyone).

11. You are constantly apologizing/trying to make it up to his normal sibling(s) wondering all the while what damage the situation is doing to them.

12. You live in constant fear that God forbid something happens to you, who in the family would be willing to raise your children and deal with all their issues?

13. You hope and pray that you can somehow teach your autistic child(ren) to be independent enough that their normal sibling(s) don't have to give up their own dreams to care for them when you're gone.

14. You find yourself alternating between complete fascination and utter disgust when you hear about new research/advances in the causes or treatment of autism, wondering if a useful and affordable one will appear in your child's lifetime.

15. You get frustrated with the fact that if autism was a condition that was actually killing 1 out of every 100 of our nation's children that people would be storming the gates of government demanding a cure.

16. You sometimes think about parents of children with other debilitating illness/conditions and wonder what it would be like to have hope for a cure, or at least the comfort of understanding the cause.

17. You laugh at all the "relationship advice" you hear on TV, etc. telling you to make sure you have "date night" and "self care" and hobbies, all the while praying your autistic child(ren) will sleep long enough for you to actually get a decent night's sleep before you have to get up and do it all again.

18. You wonder if the world-at-large will ever see the brilliance hiding underneath your child's autism.

19. You have some really great days where everything on this list is null and void because your autistic child just made the honor roll (or other achievement).

20. You have some really bad days because everything you tried in order to manage your autistic child's behavior blew up in your face.

Autism certainly gives new meaning to the old Chinese blessing/curse of "May you live in interesting times."

Wednesday, April 13, 2011

If You Don't Have One, You Don't Get It

A child with autism, that is. Which would be the main reason (in case anyone in blog-world was wondering) I've seemingly fallen off the map.

Now, I have all the sympathy and empathy in the world for parents who struggle with other special needs kids (Down's, physical handicaps, etc.) But there is something unique in the challenge of trying to raise a child who looks (and 90% of the time ACTS) completely normal. Except that 10% of the time his differently wired brain jumps its tracks in weird tangents, leaving his parents (usually me) to deal with a situation no parenting book has ever addressed.

And now I have two. Well, maybe. Connor (my littlest one) has been in the same special preschool program his big brother was in to address a speech delay. We thought he only had a speech delay. Now the battery of (not exactly illuminating) tests the school has administered indicate "problems" we were not anticipating. Really, the main Problem is that Connor doesn't respond to verbal questions verbally. And he is very, VERY stubborn. So again (like it was with Chris) is the issue CAN'T or WON'T.

At home, my little one chatters like a magpie all day long. Does he "tell stories" like his sister did? No - picture him more like an author "narrating" his day. He's a very logical kid, like his big brother. And really, is a child who is capable of going to the kitchen utility drawer, finding a screwdriver, and then opening up his toy to replace the batteries (if I allowed him to) really mentally challenged? Really? The one who, when Mommy couldn't find all the letters to the alphabet puzzle instead MADE HIS OWN LETTERS OUT OF PLAY-DOH in the puzzle's spaces. Mentally challenged, eh? How about - bored? How about - has his own very strong personal agenda? He is a Leo, after all (NOT, that I believe that stuff, but sometimes you have to wonder....).

Evidently, he speaks so seldom at school that one of the testers hadn't ever heard his voice, until she brought out a puzzle with a helicopter (his favorite thing besides letters). And he said to her, "It's a helicopter!" Do I have any idea why he won't talk at school? No, I do not. Do I have any idea why he brings all his learning home so that he communicates with US much better now but still won't talk at school? No, I do not.

Trying to explain to someone what it's like trying to run a household consisting of one autistic child, one "normal" child, and one "unidentified-special-needs" child, topped off with two egghead absentminded-professor type parents defies description. I call the kids my "three ring circus" because that's what it's like most of the time in our house.

I'm sure lots of teachers, administrators, doctors, dentists, pastors, family, etc. wonder why it seems we're always just-on-time or a little bit late to everything. What they fail to understand is how often we're lucky to have managed to BE there at all. How often some crisis or other threatens to derail our efforts entirely. How attending a "family function" like a family church service or kid's concert involves more juggling than a clown and more skill than trying to herd cats. And afterward more exhaustion than having run a marathon.

So I have gone into hiding, of a sort. I've stepped waaaay back from all other obligations except family. Even church. At this point in my life, NOTHING takes priority over my family. (And my sanity.) I really think God will understand, even if the folks at church wonder why we keep disappearing. Right now, these kids of mine ARE my God-given mission.

I can no longer attempt to be Super-Mom or Super-Christian. I can only be me. Still figuring out who she is...

Tuesday, October 27, 2009

The daily-ness of autism

When you are raising a child with special needs, you encounter many family dynamics and situations that are not covered by the standard parenting practices. It's hard to even define a "normal" day in a house with a special-needs child. The minute they receive their diagnosis, life ceases to be "normal." The best you can do is to create your own "new normal."

The special need we deal with in our household is autism. Despite what you read and hear from a few famous folks - autism has no specific known cause, no known cure, and no standard method of treatment. Many therapies have been proven to help, and many are just so much snake oil. Every autistic child is different. Not even a doctor can say which child will respond favorably to which treatment.

We are some of the "lucky" ones. Our son was diagnosed PDD-NOS when he was 31/2. After a year in a special preschool (offered gratis by our public school, otherwise he couldn't have gone) the doctor said he could now be considered merely Aspberger's (the mildest form). On a good day Chris seems just a little eccentric. On a bad day (or bad week, or month), like recently - well - let's just say postage to Timbuktu or Saskatchewan starts looking pretty good. For me.

People try to be helpful. "Well, I saw on Supernanny..." Um, no. Unless you have an autistic child or are trained to work them, you DON'T understand. No matter how much you think you do. If you have an autistic child you can safely throw all your regular parenting books out the window. What works with them changes yearly, monthly, daily, sometimes hourly. Schedules help. But as any mom knows - life happens to schedules.

I have within the past few years become blessed by friendship with the moms of some of my son's classmates/Scout mates. When we have a chance to talk - wow, the relief! Yes - here is somebody who understands what my life is like. For me, the hardest part of the day is from 4PM to 8PM - the time when my kids are all home but my husband isn't yet, and I have to somehow make dinner, referee homework, and sort out the various autism drama that each new day brings. With a constant eye on making sure Chris doesn't get red food coloring or MSG (autistic kids are notoriously sensitive to food additives) and an eye on his nutrition and vitamins (autistic kids are notoriously rigid eaters), keeping track of what this week's "currency" is to use for discipline, and hovering over him like a hawk to make sure he hasn't found yet another new thing to stim off of - those few hours can be the most exhausting of my whole day.

Oh, and let's not forget about the family dynamics between the autistic child and his "normal" siblings (though really, who knows how normal or not they are - since all the traits cluster together even without a formal diagnosis). Toss in one probably-should-have-been-diagnosed-ADD mom frantically trying to hold the whole schedule together - and you get what I lovingly refer to as My Three Ring Circus.

You know, people got on my case for years about why I wasn't Using My College Degree. Ha! If only they'd known. I tell you what - that degree in Psychobiology may not have led to a career, but it has become one of my most useful weapons in the war against autism. Funny isn't it, how things work out?

For now, it's back to my regularly scheduled chaos.

Wednesday, January 7, 2009

Rain, rain go away...

come again perhaps in May. You know, when it's warm again.

So while the northern part of our country is shoveling out from under snowstorm after snowstorm, northern VA has gotten 3....straight.....days....of.....cold.....rain. Brrrr. Cold rain just chills me to the bone. And makes the kids all grexy (oops, my PA Dutch is showing). And for some bizarre reason magnifies No. #1 son's autistic tendencies. No one seems to know why this is. But every time we have several days of rainy weather in a row, it happens. Is it the low barometric pressure? Lack of sunlight? Lethargy masquerading as aggression? I have no idea.

Nothing in any parenting manual or autism help site can help me navigate these murky child rearing waters. Believe me, I've looked.

Days like this I wish I could buy one of those giant moonbounce things and stick the grumpy child in it until they've jumped out all their grumpiness.

Either that or, sun lamp, anyone?

Wednesday, December 3, 2008

In need of a change

There's got to be a better way. I just haven't figured it out yet.

I've got a few personal puzzles rambling around in my brain in need of a solution. This morning was awful, and something's got to give before I go crazy(er). I haven't any solution yet, but these are the main conundrums I've been pondering in the last week or two:

1. I need a new morning routine. The old one (before Charlotte was in kindergarten) just flat out does...not....work....anymore. I keep assuming if the kids get enough sleep they'll bounce out of bed and get ready for school with little or no prodding. Ha....ha. For the past 3 nights I've tried to make sure everyone was in bed early. Last night everyone but Brian was in bed by 9:30 - including me. Didn't. Make. One. Bit. Of difference. Grrrr. In fact, it was worse. I'm not sure what's behind it but Chris has taken a sudden turn of Stubborn on and I'm tired of having to oversee the putting on of EACH piece of clothing, the finishing of EVERY before school task. I don't know if the solution is his own personal schedule, a new alarm clock (that actually wakes him up), an earlier wake-up time, or a cattle prod but if I have one more send-off like this morning I'll be looking for that padded room sooner rather than later.

And, oh yeah - morning showers in the winter are less than pointless. After running around getting everyone ready and standing out in the frigid morning air for 20 minutes at the bus stop with a hood (or 2) clamped over my head I may as well not have bothered - 1/2 hour saved on morning routine.

2. Somehow, some way I am not going to fall into the Christmas Craziness trap. I'm not sure how, but there has got to be a way to simplify. I did start my shopping back in the fall, so I'm about half done. I'd also like to avoid the overspending thing. I always expect too much of myself in this department. Maybe this could be the year I concentrate on the traditions that are really meaningful to me and my family and skip the rest.....for real, this year.

3. I need at least a temporary solution to the cognitive dissonance I've been feeling over our church situation. I find I've really been missing many of the beautiful liturgical things that traditional churches do this time of year (Advent wreath lighting, classical Christmas music, Christmas pageants for the children, Christmas carols, etc.) And yet I know that after a few weeks in a traditional church I will feel bored, stuck, and busy. Maybe I should go get a Book of Common Prayer and dig out the hymnbooks and create my own Advent services for the family at home. One more thing for Mom to do, but maybe it will satisfy this spiritual itch that's been plaguing me.

4. My 3 children are very different from each other and have recently been showing me that they have 3 very different sets of needs. I need a new plan to balance this and I'm not sure what it is. My oldest, Chris, has a lot more homework as a 3rd grader and is getting more stubborn about doing it on his own. I spend more time prodding him along than I used to, which means less time with my other two.

Charlotte, in kindergarten, after a long day of holding in her huge energy supply, wants to bounce around and talk to anything that moves (and even anything that doesn't). Which drives the one trying to avoid the homework crazy.

Connor, the 2 year old, also has an abundant energy supply - but he prefers to use it to climb things. Since he's nosy too, many times he chooses to climb all over his brother to find out what he's doing, which also drives Chris crazy.

The hard thing with autism is it's nearly impossible to untangle what is normal 3rd grade behavior and what is the autism. How much does Chris have control over, and what is beyond his control? What do I do when none of the discipline I've used over the past few months puts a stop to his enormously bad attitude?

Anyway, I'm going to make a point to stop doing things mindlessly that no longer work, and work on trying to find something that does. I need to keep in mind that other people's expectations for family life, Christmas celebration, child management, and my spiritual life don't matter. Ultimately, I play to an audience of One. Maybe I can remember that this Christmas season...