Tuesday, December 12, 2017

The Grumpster

James is fantastically verbal.

Which is strange sometimes for me because the three older kids all have varying degrees of speech delays (and are all in speech).

James does not.

He graduated from Early On the day he turned three, shortly after graduating from the PT that started when he was seven months old.  He's taking gymnastics once a week now, which I think is helping him continue to get stronger and stronger, and you really can't tell that this same little kid couldn't sit up until he was nearly a year old.

I, not infrequently, have found myself marveling at how easy speech is for him.  And by extension how much easier life is with a two, and now three year old, who can tell us what's wrong.  Because he has words he's much less frustrated, generally, than the older kids were at the same age.

His early interventionist and I used to talk a lot as he was nearing graduation about how he isn't just verbal though, he's hilariously funny.  He intentionally tells jokes that have all the adults around him cracking up.

And they're particularly funny because James so often has his very serious "Grumpy Baby" expression until he delivers the punch line.

Last night before bed he and Patch were asking to look at baby pictures, and both boys were laughing hysterically over James' expression in so many of his pictures.

It started, more or less, from the day that he was born.  In every single picture he had, what would later become his trademark James' frown:

"I was angry at your phone."
As he got older the perfected the look:

"Because I wanted to go out!"
It could range from slightly concerned to aghast at the antics of his older siblings:

"I was angry at Maggie.  No.  I was not angry there.  I was happy at Maggie."
And one of the reasons it was so funny was that he was one of the happiest, most easy going children that I have ever met.  But when it was time for photos, he had no time for that nonsense:
"I was angry at you.  I was angry.  Because it was not fun. It was not.  I was not going.  I was not talking."
And so it became something of a joke around here.  James looking grumpy eating cake.  James looking grumpy in tummy time.  James looking grumpy snuggling with his sister.

"Because I hate the cake."
He was always up for glaring, usually before breaking into an elusive (on camera at least) smile.

No comment from James on the cause of this glare.
The other day we were walking down the stairs together and he pointed out this picture, which is hanging on the wall.

I asked him what he was thinking and why he was frowning.  We'd just gone through a corn maze, had walked through a pumpkin patch and had gone on a hay ride.

He was having a fun and running around.  And then he paused and I had snapped this picture on top of the hay fort.

Why the frown? I asked.

"I was worried that you were going to leave me.  In that barn.  You know you were always doing that. Leaving me in barns.  All the time."

I assured him that he had never in his life been left in a barn and he started to chuckle.  "Yup, always leaving me in barns.  All the time.  Every day."  followed by hysterical laughter at the silliness of his story.

I pointed out that he has never, in all his life, been left anywhere, but the story of the barn has quickly become a favorite that he likes to tell.

As he's gotten bigger his face is no longer quite so much a resting frown and he poses and shouts "take my picture!" whenever he suspects a phone might be in camera mode.  But once in a while the Grumpy Baby frown peeks out and I'm always interested to hear his narration of why he was frowning when I show him what I snapped.

And these days his smiles are nearly as dramatic as his frowns.

"Take my picture mom!  Take it!  Cheeeeeeeeese!"
I still can't believe that he's three.  Although he still refers to himself as "the baby."  And when I ask about Tessie he says that she is "tinier."

I can't wait to hear what he's going to come up with next!

Monday, December 11, 2017

Family Photo Struggles

Our family photos are something of a joke around here, because no matter how much I plan and wish and hope they are always spectacularly bad.  You would think that I would have learned by now that part of what I always end up loving about them, much, much later is how they sum up the personality of our family.

I will admit that pretty much the only time I struggle with envy is when I see photos of a bunch of kids and they're all lined up and looking at the camera and smiling.  And I can't help but think "guys, come on, can't you do that for 3 seconds.

But alas.  That is not us.  Even for .3 seconds.  Even if the lady at the Santa for kids with autism photo shoot takes twenty photos.

In the beginning, it was easy to get a family photo:

And even once Sadie came along, she usually cooperated.  In the beginning at least:

And then Maggie arrived.  And the photos still had a chance of turning out the way I'd hoped:

But by the time Patch arrived everyone looking the same direction was a distant memory:

And often time hilarity followed:

Can everyone look at the camera?

No.  No they cannot.

The photographer exclaimed that getting this photo was a challenge to the twenty years of tricks he had up his sleeve.

And when I tried to get photos of all the kids together?  This was pretty typical:

Then James added his Grumpy Baby frowns.

And so last year when I read that there was a time for kids with special needs to get their photo taken with Santa I was thrilled.  The kids had a blast and the picture was really, really good (for our family):

So perhaps I was overly optimistic when I saw the ad on Facebook to sign up to see Santa again.

The kids were extremely excited in the car.  They had a great time before and after.  Lots of giggles and laughter.  They had a blast.

But every time the camera snapped...  chaos.

This was the best of many, many photos:

The more I look at it, the more it makes me laugh.

Maybe next year... maybe...

And maybe not!

Sunday, December 10, 2017

Finally an Update

I have been meaning to post an update all week, but I don't really have much of an update to give you.  I'm still sick.  And I'm really tired of being sick.  I'm also extremely thankful for school buses or I'm not sure how I would have survived the last few weeks.

At the doctor's appointment after I wrote my last post I didn't have a fever.  The next day I did, but it was low.  My doctor was cautiously hopeful that maybe it was just a bad virus.  I'm still hoping it was just a bad virus, but it's been hard to tell because first I was sick, then I was in a lot of pain from the spinal tap, and by the time that went away I was sick again, although now with something that feels more like the flu, that one of the kids brought home from school.

I keep hoping that this respiratory thing will go away and I'll be able to tell if I still have a fever without it.  I know I should make an appointment to see my primary care doctor again.  He is sending me for some genetic testing.  And I'm on a waitlist to see another doctor sometime in January.

I'm still sleeping a lot, but I've also been able to be up and about around the house way more than back in November so that has me cautiously optimistic.

I've also been knitting.  A lot.
Thank you for the prayers.  I wish I had more of an update.  It has been a rough couple of months (November 3rd was the last "normal" day) and I'm ready to feel like myself again!

Tuesday, November 28, 2017

Day 18 and a Spinal Tap

Disclaimer: If medical tests like spinal taps make you queasy, maybe skip this one.

Yesterday I found myself thinking, as I signed a paper that said I understood the procedure that the ER doctor was about to perform (followed by a brief description in my own words that said he was going to "insert a needle into my spine to withdraw fluid to be tested" to make sure I really knew what I was agreeing to), that any time I'm having a tough day and find myself thinking "can this day any worse" I will forevermore ask myself "have you had a spinal tap today?" and if the answer is no than yes, it can get much, much worse.  

On November 4th I woke up with a slight fever.  99 degrees.  Not even a real fever, really, I told myself.  I had a 5k to run.  It was my second after four months of training and I was so, so excited.  Sadie was in a kid's race and was extremely excited for us to be running on the same day. Besides I'd had a cavity filled the day before, so maybe it was from that, at least, that was the excuse I made when I laced up my shoes. 

So I ran, which, in hindsight, was a horrible decision.  By the end of the race (my disappointing 11 minute mile was a miracle) I knew that the temperature wasn't a fluke and that some bug was coming on fast.  

Sadie's 1k
By night time I had a fever of 105.2, despite Tylenol and Motrin.  I finally managed to sleep and in the morning I felt a little bit better.  The fever was down to 102.  

By Monday morning I felt mostly better and we had a busy week of new schools and bus schedules and while I knew I didn't feel well enough to run, it didn't really matter, because life was too busy with all the changes that had come along.  I pushed through the fatigue, and headaches, and nausea, and went to sleep as soon as the kids were tucked into their beds.  

The next week was the next time that I took my temperature and it was then that I saw that it was still over 100.  And over a hundred it stayed.  After a week of daily fevers I went to see my doctor, and told him I was afraid I had a kidney stone, because my kidneys had begun to hurt (and having had infections in the past, and one stone, I knew that feeling).  

Every test came back normal, including an ultrasound of my kidneys.  He said to come back in a few days if the fever didn't resolve, and so, three days later I was back.  He ordered ultrasounds of my gallbladder, liver, spleen, and a few other organs, and while my spleen was slightly enlarged, everything looked good.  

Feeling sick, but there's always someone to cuddle with.
After thirteen days of fever he ordered a Mono test, an EBV test, and a CMV test.  They were all positive, but the results showed that they were all past infections, with no current antibodies.  

Somehow I cooked Thanksgiving dinner (I was extremely proud of managing that while feeling the way I felt) and yesterday, on the seventeen day of the fever I called at 8am when the office opened.  

I mentioned that the fever was still hovering between 100 and 101 most of the time, and that for the past three days I'd had a dull headache and neck ache. Nothing horrible.  Just annoying.  

And they sent me straight to the ER.  

I was embarrassed to be there, with my low fever and dull headache and neck pain.  The triage nurse put me in a room with a chair and said they might move me somewhere else if someone else thought I needed it. 

After an hour a PA came in and was immediately more concerned.  17 days of fever.  Well 23 if you counted the week I didn't take my temperature and went back to that fever of 105.2 (and apparently everyone there thought that counted). And neck and head pain.  But not severe, I pointed out to anyone who would listen (I'd googled and google said spinal meningitis was the worst headache ever... this was not that).  She told me to wait while she talked to the doctor.  

A nurse arrived a few minutes later and took me to a room with a bed.  And a moment after I tied the hospital gown behind my neck the doctor was in the room explaining the difference between viral and bacterial meningitis (he did not think bacterial was likely, because I probably would not have survived that long with bacterial meningitis, but viral might be possible, yes, even with the dull pain) and he was explaining why I needed a spinal tap, and excuse me nurse can you bring her some fentanyl and ativan (things I learned yesterday: I can still be totally panicked about that needle being near my spine after being given ativan).  

Before yesterday I had had 10 injections in my spine... four cortisone injections for a herniated/ruptured disk, two spinals, and four epidurals (one went bad and had to be replaced with a spinal, which is why they don't add up).  When I go in for c-sections, the epidural is the thing I stress out about for months and months beforehand, not the major abdominal surgery.  

And the lumbar puncture was... about as I expected.  It's not something I hope to ever experience again.  And today I've found that I can spend a solid ten minutes on my feet before I have to lay down.  It still hurts.  A lot.

And so far still no answers.  I'm home.  Something liver related was elevated.  Even my white blood count was solidly normal (and lower than the last blood test... I glared at those results like "you aren't even trying!  Fight back!").

So we're now on day 18 (or 24) of fever.  But who's counting?  Okay, me.  Totally me.  I'm probably counting hours at this point... I am tired of being sick.  I go back to the doctor tomorrow.  

And that is what is going on here.  Lots of laying in bed with kids on all sides watching cartoons (and when they aren't here catching up on any and every Netflix show I've ever been vaguely interested in).  I'm really caught up on my royal family news.

Also knitting.  Lots of knitting.  Scarves for everyone.

And I've never been more thankful for buses.  Today everyone came and went to school and all I had to do was walk out on the porch and wave.  I'm not sure how I would have survived without those glorious yellow buses.  

Hopefully I'll have some good news soon.  Like that the fever is gone.  And that I'm up and about and not running to lay down every half hour.  And that the scary things that come up if you google "persistent fever" have not come to pass (I know, I know.  Do not google.  I'm the worst at that.).  

Sunday, November 19, 2017

Tessie News

I promise that one of these days I'm going to write about something else.  I was meaning to write all week, had blog post ideas flitting through my head, but I'm on day eight of a hundred plus fever and I've been falling asleep as soon as the kids are in bed each night.

I've even given up on NaNoWriMo this year, as mini disaster after disaster have kept me from writing until I've decided it's just not in the cards for 2016.

We had another scary night with Tessie.  It started with an alarm going off and a floppy baby and momentary terror that had my heart in my throat and was followed by a dozen more apnea alarms before morning, but this time I realized in early morning that the light that signaled a too slow heartbeat was also bright red and glowing.  And that is how I found myself on the phone again with the pulmonology office, the after hours line this time, in the early early morning.

It can be a delicate balance.  She has central apnea.  That means her brain stops telling her to breath.  That's why she has a monitor.  If I called every time she had a dozen apneas in a night I'd have called a lot.  Every night when she was tinier.  And the "is this important enough to call" can feel complicated.  Sometimes, as we've been on this journey with her, tiny things are actually huge and things that feel huge aren't important at all.

The person who was on call was in her car when she called back and explained that as a result she couldn't see Tessie's file, but after a moments conversation she announced that she knew exactly who Tessie was, because there had been some conversation in the office about the results of the second sleep study.  

Now for those who is new here, two sleep studies ago Tessie only had 15 central apneas, which was no enough for her insurance to continue to pay for her monitor.  I fought this, because she's had instances, like the one the other night, where she's stopped breathing after having next to no apneas for a month beforehand, and had to be turned onto her back and had her chest rubbed hard until she gasped and started breathing again.

I spoke with a nurse twice and was told they would not be budging on this, it was policy that when there were less than five episodes an hour the monitor went back to the medical supply company, and than Paul spoke with one of the pulmonologists and was told the same thing.  We finally took her in to see her pediatrician and he called and fought for her to keep the monitor and they ordered another sleep study, saying that if this one is normal we'll know with 99.99999% certainty that she is fine.

I will admit that I felt like I was being humored.  And what were the chances that she would have a bad night?  They were terrifying, but also few and far between.  

But she did.  She had multiple instances of hypoxia, which earned her the right to keep her monitor for another six months, and resulted in the delivery of a giant oxygen machine that gurgles happily in the center of the room all night long.

The On Call knew who Tessie was because there had been a conversation in the office about her case when the results of the seconds sleep study came back, about "mother's intuition" and how unlikely it was that I had persisted in pushing for more tests.  She said the talk in the office had been that "if that baby had been with another family, it could have been..." her voice trailed off and she left the rest unsaid.  

It could have been very, very bad, my mind completed the sentence.  

Two nights ago, Paul had gotten to her before I did, he was maybe three steps ahead of me, and he shook her shoulder and she had flopped back and forth still, soundly asleep and for a split second, before I realized that the heart monitor was still showing a steady green light, I was terrified.

I thought that we'd lost her.  Then I saw her chest moving steadily up and down again and I couldn't stop shaking.  

If she hadn't had her monitor then, would she have been all right?  

Still the sleep study and hypoxias have bought us six months with her apnea monitor and maybe in six months she really will have outgrown it.

If she's going to outgrow it.  

No one can tell me if she'll outgrow it because we still have no idea why it's happening.

Or maybe I'm going to be holding my breath every six months, forever.

There is a tiny sliver of good news in all this though.  

Tessie has had weekly therapy sessions since her developmental delay became so glaringly obvious when she was between one and three months of age (at three months she was missing virtually all of her one month milestones).  

Her last evaluation was about a month ago.  Her results came back showing some big strengths.  She scored a 12.5 out of a cutoff of 7 for intelligence.  Her gross and fine motor skills were similarly strong. But she was way below the line in social communication and initiative, giving her a 40% delay in those areas.  Which is... not insignificant.  

However after five days on oxygen she was vocalizing way more than she usually does and was making a little bit of eye contact and definitely using her voice (in whines mostly) to let us know when she wanted something.  Usually she doesn't do that and doesn't let anyone know when she needs something, so that was extremely encouraging.  

Her pediatrician is planning on sending her for an autism evaluation in a month and a half when she if officially eighteen months old.

On Wednesday we were at the older kids' gymnastics classes and she fell asleep on me for the third time in her life (if I'm counting correctly).  She loves to snuggle but it's almost impossible for her to be still against me.  Usually when she's tired she wants to be in her bed by herself and she quietly falls asleep.  Which is how she has been since the day that she was born.

So I loved every moment of her sleeping quietly against my chest.

And in other news, she was able to have a equine therapy session alongside Maggie yesterday, which was hilarious to watch.  At one point she was riding along and I could see her bouncing up and down on the saddle happily as she went past.

So we wait and pray and cuddle our hilarious and strong little bunny.

We are so lucky to have her.  

Friday, November 10, 2017

Roller Coaster Weeks

I'm laying in bed listening to the hum of the oxygen machine that arrived earlier today, feeling thankful that I shouldn't have to tell anyone that they can pry Tessie's breathing monitor out of my cold dead hands, for at least three to six more months.

The last month has been a roller coaster of sorts.

It began the first week of October when Tessie went in for a sleep study.  

During the sleep study she had 15 central apneas.  For anyone who's new here, that means that fifteen times her brain stopped telling her to breath for more than twenty seconds. 

But fifteen apneas, with desats that only went down to 88 was not enough, according to the insurance for her to keep her monitor.  

The nurse who called told me this in a cheerful voice.  It was great news.  I should be excited.  No more plugging in cords and turning on machines.  

She did not expect the sheer panic of my response.  I told her this story.  I told her how she had stopped breathing twice during the summer, after weeks and weeks without an incident, and how I'd had to turn her over and rub her chest to get her to breath again.  

I told her I was terrified to lose that monitor.  

She said she'd call me back.

Another nurse called me a few hours later.  She'd talked to the doctor and the doctor was clear.  Tessie didn't need a monitor anymore.  It was standard protocol for a baby with only 15 apneas a night.  Most babies, she explained, were off the monitor at six months.

This baby was diagnosed with severe central apnea at six months, I said.  

In the following days we begged and pleaded and argued.  Don't call the monitor company.  Give us time.  Let the insurance deny it.  Let us fight the insurance over it. Her neurologist agrees she needs to be on it still. Paul called several times and the pulmonologist made it clear: this was protocol and nothing could be done.

I was frantically making calls and leaving messages, first on Tessie's neurologist's nurse line and then with her pediatrician.  The nurse at the pediatrician's office called back twice, and the second time we spoke she suggested I bring her in and talk to the doctor in person.  

I kept missing the pulmonologist's calls while running around getting the other kids to their schools, and therapies, and activities, and I still hadn't spoken with her two days later when I went in to see Tessie's doctor.  

I had dodged several calls from the medical supply company asking when they could pick up the monitor.  

I went in to see how much apnea monitors cost and I sat in the office sobbing when they told me that her monitor was $10k and that it was billed as a service (unlike some machines where insurance payments can ultimately lead to the patient owning the machine).  They wouldn't take it away, they assured me.  I would just have to pay for it.  And the quote put it very much out of reach.

I went in to the appointment feeling hopeless, but also determined that I was going to make every possible appeal to keep the little monitor that beeps when she stops breathing for more than twenty seconds.  

Her doctor called the pulmonologist twice while we were the office and we sat in the exam room and waited for the pulmonologist to call back.  We talked about my fears.  He said that the pulmonology nurse had told him that they weren't worried about Tessie because once a baby who had central apnea as a result of prematurity is down to 15 apneas a night, the apnea is resolving and isn't a problem anymore.  

"But we don't know that she has apnea as a result of prematurity." I said quickly, quoting his own words back to him.  At every appointment, with every specialist and doctor she would see I would always ask "is it going away" and they would always say the same thing and now those words came rushing back to me. "She was 8 lbs 12 oz and full term and I keep asking every doctor she sees if they think it's neurological immaturity and if it will go away eventually and everyone tells me the same thing: we just don't know."  

"We're on the same team here," her doctor assured me.  And he promised to call when the pulmonologist called him back.  

He did.  And in the two minute conversation he had with her pulmonologist he had more information than I'd gained in months of appointments.  

The pulmonologist had said that when apneas decreased to the frequency that Tessie's were at they were going away when they were caused by prematurity.  Her pediatrician had asked if her apneas were caused by prematurity.  We don't really know, the other doctor said.  We don't know for sure that this doesn't have something to do with the brain hemorrhage that she had.

I nearly fell over.  

I'd been asking the same question for months and had been told over and over again absolutely not.  It couldn't be the brain hemorrhage because it "wasn't clinically significant."  

Maybe the two were entirely unrelated but as a layperson it certainly felt suspicious.  Not that it would make a difference. Tessie's brain hemorrhage very likely happened before she was born and it is what it is.  

He told me that he was going to write a prescription for a monitor and that the pulmonologist had agreed to order another sleep study. 

"Her pulmonologist says that if this one is normal than it's a 99.999999% chance that there's nothing there to find."  

I thanked him and hung up the phone.  

Earlier this week, before we made it to her sleep study which had been scheduled for this Saturday, it happened again.  Tessie's alarm went off seven times in a fifteen minute span.  Five of those times she started breathing again on her own.  Twice she didn't.  This time I didn't have to flip her over.  I just had to rub her back hard until she gasped and shifted herself around and went back to breathing deeply as she dreamed.  

"Don't hesitate to take her to the ER," the pulmonology office told me.  "But I do," I explained.  "Because we've been to the ER for this.  For not breathing.  For seizures.  And yes they're terrifying when they happen.  But then she wakes up, and she looks fine and I take her in and they look at her and say 'why on earth did you bring this perfectly healthy baby to the ER.'  So I do hesitate."

They bumped us up to Thursday.

So I worried my way up to last night when we went in for the sleep study and Tessie tossed and turned and fussed and complained about the nasal cannula.  And I stared at her half the night and listened to her perfectly regular breathing and I knew, I just knew, that she had had a spectacularly uneventful night.  I didn't even hear a single apnea this time.  

She had already had one of her rare scary monthly events.  And we'd already met our monthly quota.  

They hadn't seen what I needed them to see.  

I was folding laundry at home when the pulmonology office called.  To tell me that she was perfectly fine and didn't need a monitor, I thought.  

Instead the nurse delivered news I honestly had not expected.  

Tessie had had central apneas.  She'd had desats down to 82%.  She needed to be on oxygen at night.  The medical supply company would be delivering it immediately.  They'd already sent the order in.  

They would order another sleep study in three to six months, she said. 

Six, I thought.  I'm going to be pushing for six, and not just because sleep studies are pure torture with a toddler.  

And for the moment, I am relieved, because for now if she stops breathing an alarm will sound and I'll know about it.  

Hopefully in six months she really won't need it.  And if someday she really doesn't need all these wires and tubes, I will be ecstatic.  I will be overjoyed.  

But until that day I will be holding onto that monitor with every bit of energy left in my body so that I know when she isn't breathing, so that I can help her start again. 

With the help of a 1/2 liter per minute of oxygen, even if Tessie does firmly believe that nasal cannulas are the worst invention ever made.


Monday, September 25, 2017

Tessie, Cuteness, and a Waffle

While we were rushing out the door to go to Mass yesterday morning I glanced over and saw Tessie excitedly grab a waffle and I just had to capture the cuteness:

Who knew that eating a waffle could be so cute?

Sunday, September 24, 2017

Fours Years Ago Today: A Diagnosis

Facebook tells me that four years ago today Maggie was diagnosed with autism.

I didn't go into the doctor's appointment, a few weeks prior to that day expecting anything of the sort.  We were there for tummy problems that just wouldn't go away.

The resident came in and spent forty five minutes with us while Maggie bounced off the walls and played with her stethoscope.  She said it was unbreakable until Maggie snapped part of it off and handed it to her.  She was awesome with Maggie.  And then she looked at me and said "I am one hundred percent certain that she is on the autism spectrum." and somehow I didn't fall out of my chair.

I didn't know anything about autism aside from stereotypes.  But the stereotypes told me that it was one of the scariest things that I could have imagined coming out of that doctor's mouth.

She gave me some papers and some numbers to call.

I went home and called the line to have her evaluated and went to the library the next day and checked out a stack of books and made a list of behaviors that the books told me were red flags.

When the woman doing the initial interview asked why I was concerned I opened my notebook and had an entire page of teeny tiny words printed in neat lines of things that she did that the books told me were not "normal" for a three year old.

I didn't give myself much time to be scared though.  Not really.    As with Tessie's central apnea, my response to stress seems to be throwing myself into learning everything I could, and reaching out to anyone who might be able to teach me how to help her.

A lot of people told me that everything was really the same and that nothing had changed in the days following the diagnosis, because she was the same happy, beautiful little girl.

And that she was the same little girl was true.

But our lives were also about to change drastically in ways that would have been scary to me then.  The neat little homeschool family picture that I'd had in my mind since before Sadie was born was about to disappear.

In the two years that followed I would sit in thousands of hours of therapy sessions and our carefree schedule would become much more structured.

I didn't know that what was coming next was going to better, because it was the best thing for us, the future that worked and benefited my children and family, instead of being some bright pretty photogenically blog-worthy dream that I had imagined.

On this anniversary of sorts I've been sitting her and looking back over my fears back then, and the reality that is our lives today and how different they are from one another.  This, what we have now, is better than anything I imagined.

And the question "what would I tell a family standing where we were four years ago, afraid and uncertain and wondering what would come next?" keeps popping up in my mind.  What would I have told myself if I could go back and write a letter to the me of 2013?

I would say that knowing is better than not knowing because once you know you can get her the help that she needs that will give her the tools to communicate and learn and grow.  Once you know you can learn how to communicate with her and it will be the best thing ever.

I would also tell myself that now is not tomorrow and is definitely not a year from now.  I have had so many parents tell me "I have a two year old who has non-verbal autism."

Having a two year old who doesn't speak, with or without autism, doesn't mean you're going to have a child who can't speak in a year, or three years, or five years.  Having a four year old who doesn't have any meaningful language doesn't really mean that either.

And that is probably one of the most important things that having this amazing kid has taught me.

Especially when our kid is little, we only know what our kid is like right now.  We don't know what next week is going to be like or next year.  And we definitely don't know what three years from now holds.  You don't know if you're kid is going to require care for life, or if they'll be a professor at MIT or if they fall somewhere in between.  At least not when they're still tiny.

Even now, as a mom to an amazing seven year old, I have no idea what comes next.  Will she end up testing security systems for the government or some corporation (because let's face it, she has major natural talent in that area)?  Or will we still be watching Bubble Guppies on TV and eating popcorn on Family Movie Night in twenty years?  Either way, what matters the most is that I get to be the mom of this amazing, and often times surprising kid.

My favorite advice though, isn't really my own.  It was passed on to me by a mom who had a teenager on the spectrum.  She said that the best thing that I could do is go out and read the blogs and books and articles that were written by people on the spectrum.  There's a lot of scary stuff out there, she told me.  But the people who really know what it's like for your kid are other people who've been there.

And to this day I am grateful that I didn't get sucked into the vortex of pseudoscience and imagined causes and cures (at least I didn't get sucked too far in).  I'm glad I found voices that asked me to think about how I would feel if my mom talked about me the way some parents talk about their children on the spectrum.

Because a two year old who isn't verbal may someday be able to read the gallons of ink their parents have spilled talking about their neurology as if it's a fate worse than terminal cancer.

So here we are.  Four years out from those first tests when we began to learn more about our little mermaid and truly began to understand her.  Last week I got to sit with her while she did her work for the first time in two years.

There was a section of work called "irregular plural nouns" and I watched as she said "cactus, cacti, goose, geese, and child, children."  Then she glanced over at me and grinned hugely.  She is apparently far more articulate at school than at home and I had no idea how far her language had come, because at home we talk about... mermaids.  All day, every day.   I know that she has a very expansive vocabulary about all things ocean related.

I told the person working with her that I heard more words in the hour I was there than I had in the previous year and she was shocked because Maggie talks so much at school, but Maggie, Maggie was smiling.  As we walked to the car I said "I think you've been holding out on me." and there was more smiling.  And in the following days I've heard far more words and sentences than I had before.  She is so smart.

Where will we be next year?  I have no idea.

But I can't wait to find out.

Friday, September 22, 2017

The Calendar

This spring I ran across a chalkboard calendar at Hobby Lobby.

It was pretty much love at first sight.  

I'm an INTJ and planning is sort of my thing.  I used to have mountains of notebooks.  

Now I have my chalkboard (and a small mountain of notebooks, after all my plans aren't limited to meal planning and old habits die hard).  

When I lugged it home Paul laughed and predicted that May 2017 would still be scrawled across the top two years from now.  

I was immediately determined to prove him wrong.

And so far I have.

It helps me to have a calendar of this size right there taking up large part of one wall in the kitchen.  

When I make my shopping list each week I look at it and base the list on what I see.  And if I don't have time to complete the meal I have planned for the night I can glance over the rest of the week and know that we have groceries for everything else scheduled that week and make a quick switch.

Now the calendar isn't binding (the number two question I've been asked after "where did you find it?").  

When leftovers start adding up, I make changes, blot out entire nights and use food before it spoils, or grab something because I already have it  made that will be quicker and easier.  

But on those days when I'm exhausted and have absolutely no ideas bouncing around in my head, the calendar is a lifesaver.  

And I enjoy taking one evening a month to decorate it while I brainstorm meal ideas and search for "chalkboard art" on Pinterest.  

Last month, during another trip to Hobby Lobby I came across a second chalkboard and realized that apparently chalkboard calendar's are a major weakness of mine.  Luckily I had a coupon.  

Now it's become our weekly event planner, which was especially important the first couple weeks of school when we were easing into a new schedule.

Now I'm a little impatient for the changing of the month into October when I have even more fall chalkboard decorating ideas in mind!