The Boy Turns Twelve

Twelve??  Yes, twelve.  I still can’t believe it.  He keeps getting older.  And bigger.  And his voice keeps getting deeper.

When he was born, he weighed 5 pounds, 6 ounces, and he fit between my elbow and my palm (all snuggled, of course).  When he was born, the nurses quickly nicknamed him “Red” because he was born with a full, and I mean full head of hair that they thought was red.  It still looks red when it gets wet, but he has always been blonde.  When he was born, he was a great eater.

About a month later, we almost lost him.  He had a “malrotation of the intestine” which was not discovered until I questioned his pediatrician’s assessment of the fact that he was projectile vomiting across the kitchen and spitting up yellow.  Only after we switched pediatricians and did an upper gi scan did they figure out he had this malrotation.  And that he was hours away from being in serious, serious trouble.  Immediately after the gi, they took him and told us he was scheduled for surgery in four hours.  To this day, I’m glad it all happened so quickly.  I didn’t have too much time to think about what could have happened.

After the surgery, he wasn’t allowed to eat.  They wanted everything to pass his system to make sure the surgery was a success.  Therefore, only sugar water was allowed in small amounts.  I didn’t realize it at the time, but pictures from that time reveal him to be this tiny skeleton-looking baby.  After three days, he was supposed to be clear, but he wasn’t.  He ended up not being able to eat for six days.  I was still recovering from childbirth, and there was no place for either of us to sleep there – only one recliner.  So we took turns sleeping at the hospital.  It was the worst kind of purgatory, being separated like that, praying for his recovery, while still in pain and bleeding myself (and having to pump on top of all of it).

Needless to say, he not only survived, but thrived, and soon filled out into a typically chubby, happy baby, who was still a good eater, still had a head full of blonde hair, but could no longer fit between my elbow and palm.  He was growing, and he hasn’t stopped.

Happy Birthday to my Boy.  He’ll never know how thankful I am he’s here.

babyboy

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An Awful Weight Lifted

Over the past month, I’ve become quite close, almost best friends, with a feeling I’ve never had to feel before. Because I was always a teacher, and had been for years before The Boy was born, and because (at least where and when I taught) teachers usually had a fairly decent benefits package and fairly decent pay, I didn’t ever carry the heavy weight of worry about providing for my child.

English: Heavy Burden

I know how lucky I was, and I knew it then, but I did work hard for that security, and we weren’t always absolutely free from worry on that front. With the ex doing our finances, there was always worry, but there was always the reassurance of another paycheck on the horizon, even if it was already spent. There was also a time when our district slashed our benefits, and all of a sudden, our all-important speech and occupational therapies were no longer covered. It was a struggle, but we managed. We only got sued by a hospital once, so victory for us, I s’pose.

Today, as I walked out of the Department of Social Services office, where a kind lady had explained to me, “Yes, those mailings you received do mean that your son has full Medicaid coverage,” I took one of the deepest breaths I have taken in months.

No matter what happens, he has a roof over his head, and the medical care he needs.

And now, I don’t have to spend any more emotional energy on that heavy worry, and can concentrate on finding a decent job.

We Need to Care More About Mental Health Care, Starting in the Schools

I was just watching some commentary on the Navy Yard Shootings that occurred a short time ago, and indeed how mundane these mass shootings are seeming.  No one even appeared to take notice of this last one, and that is really scary.

I’m not going to get into a debate about guns.

But I am going to get on my soapbox for a minute about something I feel is related.

Mental Health Awareness Ribbon

Mental Health Awareness Ribbon

The school where I used to work has one counselor and one social worker for 900 children.  The school where my son is enrolled now has one counselor for 300 children, and no social worker.  (And guess who is often in charge of all the standardized testing in the school?  How much counseling do you think they get done with that on their plate??)  You see, these positions are often the first to get cut or reduced, often to preserve the teaching staff.  And while I don’t disagree that teachers are important, I have seen the children walking through our school doors over the past 20 years.  I have seen how aggressive, how damaged, how out-of-control they have become.  And I have spoken with the parents, the ones who when you meet them, cause you to say, “Now I understand.”

Today’s kids are dealing with a lot.  They are exposed to so much more than in years past, and too often, parents are not on top of it, neither to control what they are watching, hearing, experiencing, nor to help them process that information.  I don’t know if bullying has increased over the years, but I do know that most kids can be mean, and when I say mean, I mean MEAN.  That’s a lot for anyone to deal with.  And then if you don’t have a perfect home-life…

Mental health in this country has always been taboo.  Unfortunately, we are telling our kids that it isn’t that important through underfunding the resources that they need to help them be of healthy mind.  And they are left to deal with the world on their own terms, with virtually no help.

I’m not suggesting that this is a cause of these mass shootings that have become so common, but our attitudes toward mental health don’t seem to have changed, even with the evidence staring us in the face.  And support for our children and their mental health should not be an afterthought, only provided when there is enough in the budget.  Our actions speak loudly to those kids, and right now we are telling them to suck it up and deal.  That’s not good enough.

In One Respect, Still in Limbo

We went to the beach today, a family day.  A gorgeous, sunny, not-too-hot, wonderful day.  And I am so happy I do not have to return up North because school is starting back up again.  I even told The Man how extremely happy I am today… except for not having a job yet.

English: Limbo at Palisades Park

This limbo looks like a lot more fun…

No, I didn’t get the job that I was hoping for, and I took it a lot harder than I expected.  I do have a part-time job teaching scrapbooking at a local craft store.  I haven’t signed any paperwork, but it’s pretty much a done deal.  This kind of part-time, though, will be very few hours, at least at the beginning, and rather low pay.  So I am still looking, and follow up on my other leads.  But I’m not as discouraged as I was late last week.

Because I don’t have anything lined up, I now need to investigate insurance options for The Boy.  I have to determine this week if we qualify for any of the state programs.  If we don’t, I have to start shopping for health insurance, which is a pretty daunting task.

I guess the silver lining is that I have the time to do this, and the time to meet with The Boy’s teachers, and attend his orientation (at 9am in the morning?!), and do this research on health insurance.

Like The Man keeps telling me, I’ll take it day by day. 😉

Not for Wussies

Making a major life change is difficult.  Making several at the same time is not for wussies.

I updated you last week on how we’re doing – quite well, actually.  But not everything is sunshine and lollipops.  I’m still looking for work (not quite in panic mode yet), and I’m finding it insanely difficult to get a driver’s license in my new state.  Combine that with the normal emotions involved with major life changes, and I think getting a little blue is par for the course.

Of course, I am a worrier by nature, so I have this natural tendency to focus on the negative, and can sometimes become paralyzed by it.

I have found that the best way to combat this is to do something.  Whether it’s working on organizing a space in our new home, rewriting my resume, or just doing laundry, accomplishing something tends to keep the stress/tears/freak-out away.  It also helps to cut myself a little slack, and remember my Grandma’s great advice: “All you can do is your best.”

For now, I’m managing the worry and stress, and counting my many blessings and the many, many positives that have come with these major life changes.

Just keep swimming!

English: Regal Tang fish at Bristol Zoo, Brist...

Statistics

Sqwiki-statistics

Here’s my take on statistics: they are interesting, but really don’t have any relevance on real life.  I mean, in the scientific  research community, they are incredibly important, and results of studies with certain data lead to more studies, and that’s how we make discoveries and find cures.  I get that.  But the funny thing about statistics is that you can manipulate them to say whatever you want them to say.  And if I believed statistics from every little study that was reported, I’m not sure I’d leave the house.  I’m not sure I would have had children or gotten married.

Statistics are not your friend when you are the parent of a child with autism.  They can get depressing and make you quickly lose sight of the most important indicator of your child’s success — your child.  He’s not a machine or a robot or a lab rat.  There has never been another child like him.  So while studies can try to predict everything about your child, they still have no clue.  Your child is an unknown quantity, and you and he (or she) will have everything to do with his (or her) success in life, and not much else has any bearing.

Statistics are not your friend when you are getting married (and even a worse friend when you are getting remarried).  They strike fear into the hearts of even the most brave among us.  But again, the most important indicators of the happiness of your marriage are the two people in it.  Nothing else.

So while society may decide that “the odds are against” us, I have decided nothing of the kind.  No one knows these people like I do, and no “preponderance of evidence” is going to tell me something I didn’t know.  No statistics are going to tell me what is “significant”.  This is my life, and these are the people I love.

Headache With a Chance of Migraine

It takes a lot to stop me in my tracks.  And thankfully, migraines don’t affect me on a daily basis.  But they do catch up to me every so often.  I have learned what can lead to a migraine, and I have learned how to cope.  Besides that, there’s not much I can do.  And when one happens, I am so thankful that The Boy is of an age to take care of himself for the most part.  It isn’t an ideal day when mom is dead to the world and incapable of functioning, but he can feed himself and occupy himself, even if his teeth don’t get brushed.

Deutsch: "Kopfschmerzen". Die wohl b...

I had a migraine yesterday, and it started as day four of a tension headache.  But I knew this one was different  because it became centered on my left side, and there was absolutely nothing I could do to ease the pain.  I slept most of the day.

I’ve said it before – being ill and having to provide for others is one of the worst parts about being a single parent.  Migraines are a lot worse than just “bad headaches”.

I know there are lots of others who don’t have it as easy as I do.  If you know someone who gets migraines, make sure to ask them in advance how you can help.  Can you take the kids for a bit, make sure they eat?  Do some laundry?  Come over and make sure the house stays quiet for awhile?  Every little bit helps, and we have to take care of each other!

 

Remembering on Memorial Day

English: WASHINGTON, D.C. (June 7, 2010) Music...My bands used to do our local Memorial Day Parade.  It took us a long time to prepare for it (we started in February), it was always scorching hot, and parents often complained about it.  After being accused of exposing their children to heat stroke for making them wear blue jeans a few years back, I decided that this gig wasn’t really all it was cracked up to be.

As always, when breaking with longstanding tradition in the education community, it is best to simultaneously propose a replacement activity.  Instead, we decided to visit a local nursing home and perform for real veterans.

This will be our third year, and I think it serves our elders well.  They really enjoy seeing the huge group come in and play for them.  Many end up in tears because it brings back memories of their own or their children’s experiences with school music programs.  They insist on shaking my hand, and tearfully thanking me, which always gets me.

It also serves the kids well, to remember these elders, to see how much they enjoy their performance, to understand what it must be like to have to wait for your entertainment to come to you.

On this Memorial Day, I’m thankful for the service of our veterans, and also the elder community who supported those veterans.

Progress: Noticing a Difference

measuring resultsI’ve done a few posts about exercise over the past year, and if you’ve been around awhile, you know it’s a relatively new concept for me.  For most of my life, my high metabolism has carried me through, and I haven’t been too worried about what I eat, or my weight in general.  Around the time of the breakup of my marriage, I was at my heaviest, and lost a lot that summer and fall, getting back to my more normal weight range.  And then about a year ago, I started to notice the cellulite and flab creeping in, and for the first time in my life, I wasn’t so happy with what I saw in the mirror.  Last winter, I bought some weights and a bike trainer so I could ride my own bike (which I love!) indoors.  I also started breaking out the yoga mat again on a semi-regular basis.  And it lasted awhile, but I didn’t really see results, so I slacked off and got out of the routine.  This past fall, I wrote about needing to get back into some kind of routine, because I was shocked at weighing in at the doctor’s and finding I was 15 pounds over my normal weight – yikes!  And then I came up with a plan.  And when that wasn’t quite working, I adjusted it a bit.  I struggled with it.  I really, really struggled with it, and I felt like I was failing.

And then in March, something clicked.  I started sticking to my plan.  The thing I thought I’d never do, get up early to workout, started working for me.  I found I wasn’t tired, I was very willing to get up and get on the bike, and just ride.  It was another opportunity for some alone time, and to process thoughts, so it wasn’t a crazy, chicken-with-its-head-cut-off kind of all-at-once start to my day.  And I coupled it with some targeted, low-impact exercises found on Pinterest a few minutes before bedtime.

And then…  I actually upped it.  I was riding the bike 3 times a week, and I bumped it up to 5 days a week (although sometimes I take a day off to do a 20 minute yoga routine instead).  And I started doing the night-time exercises every night.  And I added another routine found on Pinterest, and some sumo squats.  Not a ton, but enough to burn.  And I kept upping my resistance on the bike, making sure I was still sweating by the time I was done.

If you follow me on Facebook, you’ve gotten a few updates, which I promised, and which helps keep me accountable, and since the beginning of March, I’ve lost two inches on my hips!  And I woke up yesterday, and I couldn’t see my saddlebags anymore.  And that inner-thigh fat?  It’s fading.  They say it takes four weeks for you to notice the changes, and 8 weeks for close friends and family.  It’ll be interesting to see what The Man says when he comes to visit this week.

All I know is, for the first time in my life, I am enjoying working out, and I’m seeing results. 😀

The Classification of “Meltdown”

Rainbow pencil

Rainbow pencil (Photo credit: @Doug88888)

There is clearly a difference between a tantrum and a meltdown.  Tantrums are thrown for effect, while meltdowns are thrown because the ability to communicate something has evaporated, and tolerance levels have been exceeded in some way.  But I have noticed my own language lately, in describing behaviors as a “meltdown”, when they aren’t really.  With The Boy, I tend to classify all of the behaviors leading up to a meltdown as “having a meltdown”, so that others who do not have living-with experience with autism will understand.  Many, many times, we are able to avert the big blowout.  In fact, they have been fairly rare, at least in public.  But the behaviors beforehand are no picnic either, and require me to be firing on all engines, brain clicking along, coming up with solutions, ideas, and decisions at lightning speed, much like a battlefield medic.  It’s really a crisis for both of us.

Wouldn’t it be great if there was some universal way of describing this “ramping up” of anxiety pre-meltdown?  Wouldn’t it be great if that became part of the autism awareness and acceptance vernacular?  Like one of those smiley face charts at the doctor’s office that they use to help you decide how much pain you are in, so that you can describe it to them accurately?

“Boss, I’m going to be a few minutes late to work, we are at a level orange on the meltdown scale right now, and hope to have the situation back down to a yellow shortly.”

“Honey, I think we need to find our way to an exit.  This looks like a green heading into yellow territory.”

“Hello, Mrs. Vandenberg, I just wanted to let you know that we had a pretty rough morning, and got up to hot pink because his favorite shirt wasn’t out of the dryer in time for school.”

Of course, the application would probably vary from person to person, but it would provide a little more information than just, “he’s having a meltdown”.

What’s your opinion?  Let us know in the comments