Tuesday, January 25, 2011

Adaptations

Today as I was getting my boys ready for school and dreaming of springtime, when we don't have to put on all that snow gear, I was struck by the realization that they don't hate the snow.  They actually love playing in it, despite their sensory issues.  They have rarely complained about the snow, cold and ice even though they had never been exposed to it before last year.  And, I am really impressed by how adaptable and tollerant they are.  I can't say the same about my husband and I, who have come to hate the snow, despite having grown up with it.  It's amazing how five years in the desert can change your whole perception of winter.  I used to love the snow when I was a kid, too.  It makes me wonder if I should be so impressed with my kids adaptation to the snow.  But its more than that, they've adapted so many times, to so many new experiences.  Israel has moved 3 times in his life, one of those was cross-country and included starting a new school.  He's been at his current school a little less than two years now, and has had to cope with multiple staffing changes, including his second grade teacher moving away a month into his school year, and several of his specialty helpers changing. And don't even get me started with the babysitters/daycare changes they've been through!  His teachers tell me that he doesn't handle transitions well, especially at the beginning of the school year, but I think, with all my kids have been expected to handle, they have adapted brilliantly, Autistic or not. 
Israel has good weeks and bad weeks at school.  I had his IEP meeting last week, and we agreed that his main problem area is in coping skills.  If something happens (for example, if someone is cheating or lying) he blows his top.  There has been a lot of F-bombs dropped this year, and it usually happens when someone is cheating while playing with him.  We are working on coping skills at home and at school.  At least his outbursts have gradually progressed from physical to verbal, that is a huge improvement!  Let me say that he is at a really great school.  I have said it before how gratful I am to the teacher who cared enough to look deeper to find out why he was behaving badly at school instead of just writing him off as a bad kid.  I can't say enough about her, she really gave him everything she had in her.  Now that he's moved onto second grade, I still see that teacher from time to time, and she always takes the time to say hello and ask about Israel.  She even told me that he was one of her very favorite students, and that she would always remember him.  The entire school staff has been amazing.  They really accomodate him in ways that are kind of rare in public education.  His current teacher, for instance, allows him to doodle while he is working on his math work or listening, because she realized that he was paying attention and catching everything that is being said, and that it might actually heighten his ability to stay focused.  The occupational therapist has incoorperated so many creative tools for him to help him relieve the stress he feels daily, and even the speech teacher is helping him learn how to socialize effectively, and helping with those coping skills.  This is an awesome team, and I am happy that Zach will be going to the same school next year. 
Zach's school is good too, I just see them trying to force him into their plan instead of individualizing his learning environment.  His special ed teacher even mentioned that we might want to have Zach medically diagnosed with Autism so that we might medicate him.  I'm not sure I'm comfortable with that.  If he has needs, I would rather uncover what those needs are, and work through them, which will build coping skills he can use throughout his life, instead of medicating him so that he wont be disruptive.  As a parent, when you first hear the diagnosis, you take a deep breath and buckle up for the bumpy journey ahead, and deal with it the best you can.  There is a lot of learning we will do along the way. 
I wonder if any parents out there want to chime in on Autism medications. I'd love to get some input!

Tuesday, January 18, 2011

Doctors, UGH!

Let me just say that, no matter how much we do as parents, there will always be a guilty feeling that we have not done enough.  I was born into a family of very strong female role models, with a strong threshold for pain.  That being said, I am not in the habit of running to the doctor for every little sniffle, and I don't do so for my kids either.  That does not make me a very popular person with the doctors we've visited.  They look at me as if I am speaking in tongues when I tell them that my kids don't have a "regular doctor".  When something happens, we bring them to a clinic or more often, the emergency room.  Don't get me wrong, I hate to see my kids uncomfortable, and ask if they're OK a million times a day, including when they cough more than once or twice in a row.  But have you noticed how many things take care of themselves with either home remedies or simply waiting it out?  Even Pink Eye, the dreaded beast that everyone rushes straight to the doctor for because it looks horrible and it's (gasp!) contageous.  Yep, even the dreaded Pink Eye resolves itself in most cases.  Which leads me to wonder why we as a nation, rush our kids (and selves, for that matter) to the doctor's office so much.  I have spent too much time in doctors' offices lately, and I am exhausted from it all.
Last night was the magical night when Israel got his cast off.  That puppy went clear from the start of his fingers to his armpit, his elbow stuck at a 90 degree bend.  It had been on for 4 weeks, and we were all excited for him to get it off.  But the bones weren't completely healed, so he got a shorter cast on which he will wear for 3 more weeks.  That, I am hoping, will be the end of his appointments, at least for the arm.  The appointment itself was stressful, Israel was so scared when they were cutting the cast off, that he looked like he was going to pass out.  And there were a whole slew of emotions coming from him, and some tears.  But more than all of that, the waiting and waiting and waiting for the appointment.  Do doctors offices ever run on time?  We were there nearly two hours again, and the roads were horribly slippery when we were through, making the drive home stressful, then we had to get straight to work on homework so there would be enough time for bedtime procedures.  Maybe I'm just a baby about it all, but doctors appointments stress me out.
A couple nights ago, Zach twisted his foot while walking.  I say this without surprise, as he could trip over his own shadow.  I wasn't sure if he was just trying to get attention because we'd been talking about Israel's arm/cast a lot recently in the anticipation of him getting it removed.  But, I put an ace bandage on it, just in case, figuring the pampering wouldn't hurt him.  By the end of that evening he was feeling much better and even running on said foot.  Last night, though, he reinjured it, and refused to walk on it.  I wasn't sure how bad it was, I couldn't see any swelling, so we just bandaged it and gave him a little pain medicine at bedtime.  He had his first dental appointment scheduled today (first ever repair appointment, that is) and he was a little aprehensive about it.  Zach has always creeped into my room to sleep with me during the night.  Last night around 1AM he knocked on my door and I could hear him crying.  He was still refusing to walk on his foot so I got him tucked into bed with me and that is where worry began to set in.  Was I going to have to bring him to the doctor instead of his dentist, we'd been waiting so long to have the double coverage on insurance to be able to fix all the things wrong with his teeth.  Then there was the question of schools being delayed because of the roads, and what if he needed crutches, I don't think he's coordinated enough to be able to use them...
But I made him try to walk this morning, and he could.  Schools weren't delayed so I didn't have to worry how I was going to get them both to school and still keep Zach's appointment.  So, once Israel was on his bus, Zach and I braved the icy roads to get him to the dentists.  I had a lot of anxiety because I could tell Zach wasn't in the mood to try new things.  The waiting room has video games, that helped.  Then he went to sit in the chair, the dentist was, of course, running behind.  But this time, it was to our advantage because the dental assistant was very calming, and got Zach to talk and talk like he hardly ever does.  Then the dentist came in and she was minimally friendly.  I had wondered if she read his chart and noticed that he is on the spectrum, maybe she didn't see that.  She looked in his mouth with a mirror and quickly sat him back up, exclaiming that there was a significant change in the amount of damage from his last visit in late July, and what was the reason we hadn't started work on him.  I told them I lost my job, but that we now had medical assistance.  She took x-rays and revised his treatment plan, which was supposed to be 4 short visits.  Now, she was recommending the work be done at a hospital, under anesthesia.  She proceeded to fill some small cavities, just to see how he'd handle it.  He choked and squirmed and she started to lose patience with his movement and not wanting to keep biting on the rubber thing she'd shoved in his mouth.  I understand that she has a job to do, but when you specialize in PEDIATRIC dentistry, you ought to be a patient and gentle person.  I was sent to a side office to schedule his procedure and it only irritated me further when I was told that this particular doctor only does one per month, and she was backed up until May.  It is doubtful we will still have medical assistance by then, who knows, but if not, we certainly won't be able to afford the whole thing.  Now, I know his teeth are bad.  I know we should have had them taken care of a long time ago.  The money is a very real reason why we haven't been able to, but even more than that is the way Zach and my husband and I feel right now.  Zach now HATES the dentist, he practially RAN out of the office and begged to go to school.  Not a huge fan of school, but just to be anywhere but the dentist.  I feel sad for him, like they stepped all over his feelings or maybe more appropriately, didn't consider his feelings at all.  Maybe that dentist did look at his chart and did see he's on the spectrum, and maybe she just assumed that he didn't have a brain or feelings because of it.  Whatever the case, I have decided that I either want a different doctor to do the work, or I will go elsewhere.  I know it isn't comfortable for anyone to go to the dentist, but imagine being tortured by noises besides, and being scolded for squirming when something makes you uncomfortable.  He could have behaved much worse than he did, I was actually very proud of him.  
After all of that, I am so sick of doctors offices.  Don't get me wrong, Israel's team of professionals are absolutely the bees knees.  His orthopedic surgeon even works with the Packers and is a top-notch doctor.  I am just spent.  And there are still so many issues we've yet to tackle while we have this extra insurance.  Israel's cast again, Israel's possible diagnosis of ADHD, Zach's teeth, Zach's test of lead levels, Zach's hearing.  They want us to get them updated on their shots and I am just not sure I want to take that leap yet.  I know there has been so much controversy over vaccinations and Autism, but I am just not convinced that there isn't a connection since it was almost immediate the change in Zach after his 2 year vaccinations.  As a parent whose heart wrenches every time I see a set back or challenge that neurotypical kids don't have to face, it is just too big a risk for me to take.  And that is how I feel, no matter what doctor looks down their nose at me.

Thursday, January 6, 2011

Laughter

Something funny happened a few days ago, and it really struck me.  Israel was trying to tickle Garrett's nose with a piece of fabric, and while he was doing it, Israel sneezed.  Israel, Garrett and I were all laughing, and Zach forced a laugh with the rest of us.  Israel and I continued laughing for about two minutes.  I was amazed that he could pick up on the irony of that situation, that he, the tickler, was the one who sneezed instead of the tickled.  It was bittersweet for me, because as genuinely proud as I was that Israel has the ability to pick up on things like that, I was equally sad that Zach doesn't seem to have that same ability.  Granted, he is 1 1/2 years younger, but Zach is much more of a black-and-white kind of thinker than Israel.  I have a feeling that Zach will never really "get" irony without it being explained. 
There are a multitude of differences in my boys and how they react to their invironment.  Israel understands mostly everything he encounters, but reacts very emotionally to even the smallest things.  Zach is pretty easy going but get easily frustrated by challenges, particularily those that involve motor skills.  Both are growing up so fast, I can't imagine what they will be like as teens.  Sometimes that thought scares me more than I would like to admit.

Wednesday, December 29, 2010

Missing the Chaos

I will admit it, with two boys on the spectrum, our lives are pretty chaotic most of the time, but when my boys are gone, I sure do miss that chaos.  My mom has them for a few days, and even though the quiet time with my husband has been nice, I am eagerly awaiting having them back home to kiss their cheeks and rub their backs.  I know there will be fighting and whining, but I say, BRING IT ON! 
My husband was talking to a friend, and telling them what it is like to raise two Autistic kids, and he brought up the dark comments they make, which I hadn't thought about collectively too much.  Israel began making dark comments at the age of six, right before he was diagnosed.  When Garrett would wake him for school, he would tell him, "I'm going to cut your head off"  and if something really small would bother him, he would announce that he was going to kill himself.  This could be brought on by something as small as forcing him to decide what he wants for breakfast.  Zach has said really dark things to Garrett as well, like that he wants Garrett to die, and he used to tell him to go away when Garrett would try to give him goodnight kisses or even stroke his hair.  Israel doesn't say the darkest things anymore, but he does get really down on himself when he makes a mistake, and says that he's the worst, and the stupidest.  I think that is ADHD talking, but we still haven't had him diagnosed.  Now that the chaos of Christmas is done, we will get him an appointment.  All of it makes me wonder what kind of darkness they are living with every day.  They know they are different from other kids, but they don't understand it.  And as parents, we do our best to try and learn and comfort, but it's hard to comfort when your child doesn't like to be touched.  So, the whole process will continue to be a learning process, for them, lifelong.  I know they were given these challenges for a reason, and that they will overcome them with grace.  They have no idea what they are capable of, but I do!

Tuesday, December 21, 2010

Blessings in Disguise.

Last weekend was chaos!  Friday was Zach's first Christmas concert ever, and he did so great despite his special ed teacher having reservations.  Although he faced my camcorder the whole time, instead of his teacher, he stayed in place and sang almost every word, and smiled.  I was as proud as any parent could be!  When it was done, I got to bring him home early and fuss over him for a few hours before picking up his brother.  When we were home, the boys played so well together, taking turns, using manners.  At points, Israel was being so helpful and polite to Zach, that I felt I got a glimpse at what it would be like to raise two neurotypical children, and how helpful a seven year old would be to his younger brother.  I was in great spirits. 
Then, just as I was about to announce it was time for "movie time", which is quiet, bedroom time in our house, I heard Israel crying in a horrifying manner.  I could see his misshapen, broken arm under his shirt and when I instructed him to pull up his sleeve, what I saw had me struggling to keep from passing out.  His arm, from elbow to fingers formed an "S" shape, fingers and wrist dislocated, forearm broken and sticking out at strange angles.  Luckily, we live in nursing/medicine-based city, and several great hospitals are just minutes away.  We all loaded in the car and got him to the ER, where he was whisked into a room immediately, given a fluffy bear to settle him, and taken care of like a prince.  The ER doc was able to get his wrist and fingers back into place, but the poor guy had to wait 16 hours before undergoing his procedure to get the bones back in place and have a cast.  The whole time, Israel was quiet and cooperative, and so very brave.  He didn't ask for more Morphine than he needed, and didn't complain.  He went through the procedure and came out of the anesthesia smiling and making jokes, able to drink and eat right away.  I can't say that he hasn't been frustrated that he is having to stay inside for recess, and can't climb in the snow banks like his classmates, but all in all, he is handling it very well, and even insists on trying to do things on his own.  He is very resilliant; can even write pretty good with his left hand.
Zach had a really tough time with the whole thing.  He was making a line of trucks in their bedroom and Israel tripped on a truck and caught himself funny on the mattress, that's how it happened.  When I went to get Zach ready for the hospital, he asked if Israel hurt himself because of the trucks and I said I wasn't sure, but Zach immediately started crying about it.  Then he saw Israel's arm and cried and cried and cried.  At the hospital, he was telling each passerby what happened, most of the time with his head down in shame, sometimes with tears.  It took both my husband and I to keep the situation sane, one comforting Israel and talking to the medical staff, one to confort Zach and reassure him that it was just an accident and nobody's fault. 
Despite Israel being frustrated and Zach feeling guilty, I have seen some really sweet things going on between the two of them.  Zach has been being quite helpful to Israel, telling him to be careful when he is walking on snow or running, offering to help him maneuver.  And last night, when Israel reminded me that I forgot to give him an extra pillow to prop up his cast, Zach took his own pillow off his bed to give to Israel.  When Israel asked why Zach did that, I looked down at him and said, "Because Zach loves you very much."  Israel looked at me with the biggest eyes ever, and looked like he was going to cry; I could tell he was touched by that.
So, even though there will still always be fights and competition for attention, this bad event actually brought us all a little closer.  Sometimes blessings come in disguise.

Monday, December 13, 2010

Eyes, Blizzards, and Goopy Noses

For the past two winters that we have been back in the midwest, we have started winter off with a blizzard.  This year, Blizzard Aiden.  About a foot of snow and winds upwards of 40MPH.  The boys LOVE snow, and didn't even fuss too much about the wind and cold temps, which amazes me.  Despite their sensory issues, they overcome them because of the novelty of snow. 
Zach has caught a winter cold, and has the goopiest nose.  He insists on wiping it anywhere but a tissue, which is super disgusting.  We are still working on the tissue issue, hoping he will catch on.  If I am not readily available for him, he will wipe it anywhere.  I am happy he is finally starting to get the hang of blowing his nose, up until recently, he would always just suck it back in, instead of blowing it out of his nose.  In due time, I hope.  At least he's not a picker like Israel, man is that a hard habbit to break!  I need a good line to tell them, to scare them into not picking.  I told Israel that he is putting germs in there that will cause sores, but it has only happened a couple times, and he only half believes me.  Maybe a reward system will work better.
Israel's other issue is his eyes.  Just in the last month or so, he has been blinking hard, almost like when you get goop in your eyes.  I have asked him several times why he does it, and he says that it hurts to look at faces, or that sometimes when he is looking at something he feels like he can't look at it any longer, he has to look away.  This seems to be a relatively new sensory issue for him, I'm hoping it will be temporary, but I am reminded of a time when he was 4, he was turning his head and closing one eye when looking at things.  I brought him to an optometrist that I trust, and he said it is a common problem for kids that age, that his eyes weren't working together to form one image, so he was accomodating.  After a few short weeks, he stopped so I didn't think anything of it.  That was before he was diagnosed.
Israel also got a new special ed teacher, and she seems so warm and friendly!!!  Yay, victory!  What a blessing to have a warm person in that position.  Not that his other special ed teacher wasn't, she just seemed to be a little drained from dealing with him.  Anyway, looking forward to some positive things coming from the change.
The weekend's blizzard delayed school by 2 hours today, and both the boys enjoyed it immensely.  We spent the morning playing games, and they went off to school in great moods.  Here begins another week.  Only eight more days til Christmas vacation.  We are all looking forward to that!

Friday, December 3, 2010

Pulling Teeth

We are having teeth issues in the house this week.  Yesterday, Zach came home from school with his shirt pulled up into his mouth, chewing on it.  The entire front of his shirt was soaked almost all the way from the neck to the bottom.  I guess he was "edgy" all day, he told me the noise, sights and smells were bothering him.  Maybe he was nervous about the impending idiocracy his school displayed by sending him out in 21 degree tempuratures without his hat, scarf, and mittens on.  Today, Israel was the one with issues.  It takes that kid more than five minutes to brush his teeth.  And, while I am delighted that he cares about his dental hiegene,  we usually run out of time for him to brush thouroughly enough, because every preceeding activity requires countless reminders to stay on task.  "Israel, eat your food."  "Israel eat your food."  "Israel, focus on getting dressed."  "Remember when I told you to get dressed two minutes ago."  "You're still not dressed?"  UGH!  He gets upset and says that I am rushing him, which makes me feel bad, but I try to make him understand that his actions and lack of focus are what is causing me to have to rush him.  We have plenty of time to get everything ready each morning, but he is so easily distracted that each activity becomes a chore for both of us.  At seven, he should be dressing himself, and I know he knows how, but if I am not there to speed things along, it can take 10-15 minutes and a ton of reminders for him to get dressed.  Eating is the same story.  Don't even get me STARTED about math homework!  We are just waiting for the verification of our HMO choice and we can have him seen.
Zach was very exhausted from overstimulation after school last night, and spent the majority of the evening meowing and whimpering instead of talking.  He didn't want anything to do with Garrett, and even went to the extreme of turning his head away if and sticking his hand in Garrett's face.  He was in the mood that drives me nuts, the mood where he throws everything he can get his hands on.  I wish I knew why he does it, and I have tried to ask him so many times, to no avail.  It can be very dangerous, because he doesn't care what it is, he'll throw anything, and multiple times a day. 
We had our first snow on Wednesday, just a light dusting on the ground.  To my surprise, the boys have both said they love it, and despite the cold temps, they played out in it for a couple hours.  I am surprised their senses were not overloaded/insulted by the cold and wind.  Zach keeps telling me he loves this city, but when summer comes and the mosquitos and spiders come out, he changes his mind and starts asking about Las Vegas.  Both of the boys are allergic to mosquitos and since they both grew up in Las Vegas, last year was their first full-blown experience with them.  Zach's reaction was so bad after 4th of July, that it resulted in one of his eyes being swollen almost completely shut.  Yuck.  We'll get back to Vegas someday, and I'm sure the kids will adapt nicely.  For being on the spectrum, it is fortunate that they are so adaptable.  As for this week, I am happy it is nearly over for them.  It's almost noon and my phone has been quiet, maybe they earned their incentive trip to McDonalds this weekend after all.