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."
Thursday, April 14, 2011
Wednesday, April 13, 2011
As a matter of fact, I do get easily bored....your point?
Yes, I've changed the template again. Liked the other but it was so....busy. And yes, this will continue to happen on a regular basis as the mood strikes....
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...
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...
Wednesday, February 23, 2011
Hide and seek - Mom version
Most moms, I'm sure, try to keep a reasonable idea in their heads of where all their kids' Stuff is. If for no other reason than to prevent those frantic searches 2 minutes before the school bus arrives. If, like me, you have a child with special needs of any sort - you get to be their Alternate Brain. And sometimes, the best laid plans..... well.... succumb to Mr. Murphy and his annoying Law.
This morning I got to play Hide and Seek, adult style. Right after I discovered that Son's baritone horn mouthpiece did not seem to be in his backpack - or, in fact, anywhere. Did I mention his winter concert is TONIGHT? Frantic search in all reasonable places ensues, cut short by franticmaddashtobusstop. Which he caught by the skin of his teeth this morning.
Mom comes home - distractedly gets Daughter ready for school. Daughter gets mad that Mom has to rush her because Mom is still searching for Missing Mouthpiece. Daughter catches bus not-quite-by-the-skin-of-her-teeth.
Mom comes home and begins more thorough search of unreasonable places. Mom proceeds to tear apart front hall closet (where backpacks were stuffed before weekend company arrived), dining room secretary desk (where mouthpiece is kept for usually-safe-keeping), front entryway (where wayward backpacks, shoes, and purses flock), basement practice area (around the piano where Husband and Son keep/lose various musical instrument related Stuff).
Found - 2 pairs of Little Son's missing gloves, 1 doll outfit that Daughter was looking for months ago, one of Mom's books that somehow slid behind the piano, and a whole bunch of Junk that did not belong in a front hall closet. Front hall closet now cleaner. Mouthpiece still AWOL.
Mom realizes that Husband was cleaning, assembling, labeling, preparing Son's musical Stuff for performance tonight. Begins checking all possible places Husband has been known to absentmindedly put Stuff down in, on, or on top of (Husband is very Tall and puts things out of sight quite often). No luck.
Finally, oh-so-Finally - email from Teacher saying mouthpiece is FOUND! At.... School?
Mom sits down to (finally) drink Coffee and ponder the Mysteries of the Universe.....
This morning I got to play Hide and Seek, adult style. Right after I discovered that Son's baritone horn mouthpiece did not seem to be in his backpack - or, in fact, anywhere. Did I mention his winter concert is TONIGHT? Frantic search in all reasonable places ensues, cut short by franticmaddashtobusstop. Which he caught by the skin of his teeth this morning.
Mom comes home - distractedly gets Daughter ready for school. Daughter gets mad that Mom has to rush her because Mom is still searching for Missing Mouthpiece. Daughter catches bus not-quite-by-the-skin-of-her-teeth.
Mom comes home and begins more thorough search of unreasonable places. Mom proceeds to tear apart front hall closet (where backpacks were stuffed before weekend company arrived), dining room secretary desk (where mouthpiece is kept for usually-safe-keeping), front entryway (where wayward backpacks, shoes, and purses flock), basement practice area (around the piano where Husband and Son keep/lose various musical instrument related Stuff).
Found - 2 pairs of Little Son's missing gloves, 1 doll outfit that Daughter was looking for months ago, one of Mom's books that somehow slid behind the piano, and a whole bunch of Junk that did not belong in a front hall closet. Front hall closet now cleaner. Mouthpiece still AWOL.
Mom realizes that Husband was cleaning, assembling, labeling, preparing Son's musical Stuff for performance tonight. Begins checking all possible places Husband has been known to absentmindedly put Stuff down in, on, or on top of (Husband is very Tall and puts things out of sight quite often). No luck.
Finally, oh-so-Finally - email from Teacher saying mouthpiece is FOUND! At.... School?
Mom sits down to (finally) drink Coffee and ponder the Mysteries of the Universe.....
Friday, September 10, 2010
Waiting
Wrote this at the bus stop yesterday....
Waiting....
I've done an awful lot of it lately. Let's see, 15 min. with each child at the bus stop in the morning - 45 min. Between 45 min. and 1 hour waiting for all the bus runs in the afternoon (if they're not late.) Approximately 2 hours of my life M-F spent waiting. That doesn't include waiting in line at the grocery store, the post office, the doctor, the dentist, on hold on the phone, and let's not forget the biggie (in any major US city) - waiting in *traffic*.
Really, there's only 2 choices about waiting. You can wait patiently, or impatiently. A lot of people know exactly how to wait impatiently - eye rolling, sighing, pacing, watch checking. Many these days will wait by falling into their electronic devices - fiddling obsessively with their cell phone or blackberry. Which is fine by me. But then I love the ones who stand in line having A VERY LOUD CONVERSATION or worse yet a FIGHT on the phone with their significant other/best friend/fill-in-the-blank. While standing there. In. Line. Where you can't escape them. And you stand there wondering where to put your eyes, wishing you had ear plugs, and pondering how technology has really made things interesting for those of us who prefer to not air our dirty laundry in public. (Don't even get me started on people who have entire conversations with someone while using a *public restroom*. Sorry, but that is just wrong, on so many levels. Really? That call was that urgent you couldn't wait 2 minutes and have it *outside* the bathroom. Ahem, I digress.)
So in the interest of saving my sanity, I'm trying to practice ways of patiently waiting. I'll be at the bus stop - look for the person reading (or writing in) a book.
Waiting....
I've done an awful lot of it lately. Let's see, 15 min. with each child at the bus stop in the morning - 45 min. Between 45 min. and 1 hour waiting for all the bus runs in the afternoon (if they're not late.) Approximately 2 hours of my life M-F spent waiting. That doesn't include waiting in line at the grocery store, the post office, the doctor, the dentist, on hold on the phone, and let's not forget the biggie (in any major US city) - waiting in *traffic*.
Really, there's only 2 choices about waiting. You can wait patiently, or impatiently. A lot of people know exactly how to wait impatiently - eye rolling, sighing, pacing, watch checking. Many these days will wait by falling into their electronic devices - fiddling obsessively with their cell phone or blackberry. Which is fine by me. But then I love the ones who stand in line having A VERY LOUD CONVERSATION or worse yet a FIGHT on the phone with their significant other/best friend/fill-in-the-blank. While standing there. In. Line. Where you can't escape them. And you stand there wondering where to put your eyes, wishing you had ear plugs, and pondering how technology has really made things interesting for those of us who prefer to not air our dirty laundry in public. (Don't even get me started on people who have entire conversations with someone while using a *public restroom*. Sorry, but that is just wrong, on so many levels. Really? That call was that urgent you couldn't wait 2 minutes and have it *outside* the bathroom. Ahem, I digress.)
So in the interest of saving my sanity, I'm trying to practice ways of patiently waiting. I'll be at the bus stop - look for the person reading (or writing in) a book.
Thursday, September 9, 2010
*Not* such a great idea
Well, it seemed like a good idea at the time.
Hmm. I wonder how many tales of housekeeping woe begin that way. Just to save everyone else the trouble, a hint: keeping a bottle of laundry detergent in the trunk of your car is not such a hot idea. Especially when it is hot, outside.
On the way out to West Virginia for our camping trip our youngest had a little, um, carsickness trouble. It seemed prudent, once we got our campsite set up, to visit the local grocery store for a few necessary foodstuffs and some.... cleaning products, preferably "green" ones I could use at the campground instead of tracking down a laundromat in the tiny town of Davis.
I was happy to find a reasonably small bottle of scent-free, biologically friendly liquid detergent - which worked great to clean up Connor's clothes, and didn't have to worry about hurting the environment or attracting bears.
The stuff worked so well we decided to keep it in our camping stuff for any such emergencies. And then after the last time we unloaded the car, it got left/forgotten in the trunk - oh sure, I saw it there, but it only registered as a brief "oh yeah, I better put that away somewhere at some point soon."
Mmm. This afternoon I went to put Connor's portable stroller back in the trunk after walking home from the bus stop - and, there was a puddle in my trunk. It was a small puddle, but I bet if I added water the residue left from it rolling around in there for a few weeks would probably wash the rug of the whole car.
Think maybe I could send my husband out with a scrub brush and do just that? After all our road trips this summer it could really use a scrubbing.
Hmm. I wonder how many tales of housekeeping woe begin that way. Just to save everyone else the trouble, a hint: keeping a bottle of laundry detergent in the trunk of your car is not such a hot idea. Especially when it is hot, outside.
On the way out to West Virginia for our camping trip our youngest had a little, um, carsickness trouble. It seemed prudent, once we got our campsite set up, to visit the local grocery store for a few necessary foodstuffs and some.... cleaning products, preferably "green" ones I could use at the campground instead of tracking down a laundromat in the tiny town of Davis.
I was happy to find a reasonably small bottle of scent-free, biologically friendly liquid detergent - which worked great to clean up Connor's clothes, and didn't have to worry about hurting the environment or attracting bears.
The stuff worked so well we decided to keep it in our camping stuff for any such emergencies. And then after the last time we unloaded the car, it got left/forgotten in the trunk - oh sure, I saw it there, but it only registered as a brief "oh yeah, I better put that away somewhere at some point soon."
Mmm. This afternoon I went to put Connor's portable stroller back in the trunk after walking home from the bus stop - and, there was a puddle in my trunk. It was a small puddle, but I bet if I added water the residue left from it rolling around in there for a few weeks would probably wash the rug of the whole car.
Think maybe I could send my husband out with a scrub brush and do just that? After all our road trips this summer it could really use a scrubbing.
Tuesday, August 31, 2010
The restless end of summer
Technically, it's still summer vacation for me and the kids - my husband (who teaches in the county north of us) went back yesterday. This leaves the kids and me in a weird sort of summer-yet-not limbo. For although they have no school, we have a very busy week. A last minute IEP meeting for Chris to hammer out the details of his new middle school schedule, the band instrument presentation tomorrow night, open house for Charlotte to drop off her school supplies, and then all of Friday morning waiting while Chris has his orientation. Oh - did I mention that we're driving *back* up to PA for a special "Big O" birthday party Labor Day weekend for Brian's dad, brothers, and aunt? So add laundry and packing to the to-do list.
All of which makes for a bizarre week of "vacation." All of the warm-blooded life forms in the house are restless, including the cat - who is tired of being chased off his favorite napping chairs by careening kids. Trying to still give the kids some summer, I've attempted to squeeze in a last few visits on our waterpark season pass. Only I seem to have forgotten just how much *work* it is to go have fun. We went on Sunday as a family - a last hurrah to summer. Then I took them Monday - oh...my...goodness.... I now have muscles I forgot I had. One is tempted to think that walking through 1 foot deep water for a few hours following a preschooler is not Real Exercise. One would find out the next morning that that is a Wrong Assumption.
Ouch.
Mommy, at least, is *more* than ready for school to start.
All of which makes for a bizarre week of "vacation." All of the warm-blooded life forms in the house are restless, including the cat - who is tired of being chased off his favorite napping chairs by careening kids. Trying to still give the kids some summer, I've attempted to squeeze in a last few visits on our waterpark season pass. Only I seem to have forgotten just how much *work* it is to go have fun. We went on Sunday as a family - a last hurrah to summer. Then I took them Monday - oh...my...goodness.... I now have muscles I forgot I had. One is tempted to think that walking through 1 foot deep water for a few hours following a preschooler is not Real Exercise. One would find out the next morning that that is a Wrong Assumption.
Ouch.
Mommy, at least, is *more* than ready for school to start.
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