Sunday, September 25, 2016

Conversations with Patch

I'll have to admit that I was rather nervous after Patch came home sometime during his first few days of school, looked at me very seriously, and said "Mommy.  I didn't hit anybody today.  I didn't hit anybody or kick anybody or bite anybody."  Then he smiled proudly and ran off to play. 

But it had me wondering.  Had he done any of those things during the previous couple of days?  They'd tell me, right?  His teacher had told me he'd done great each day.  That surely meant no hitting?  Or kicking? Or biting?

And it wasn't like we've had problems with him with any of those things at home... but still.  I worried.

The next day as I was folding laundry he skipped over to me. 

"Mommy."  He paused dramatically.  "I was good today.  I didn't spit on anybody.  I didn't pinch anybody.  I didn't kick anybody.  And..." now he gave me his sweetest smile... "I didn't spit on teacher." 

I gave a nervous laugh and assured him that it was very good that he hadn't done any of those things.  But now I had to know. 

So the next day when I picked him up I related what he'd said to his teacher.  And she was surprised, not only because he hadn't done any of those things on any of the days he'd been there, but neither had anyone else.  She explained that they hadn't even talked about them, because the behaviors hadn't come up. 

And so we laughed about it and I was able to relax about Patch and his funny reports about the things he hadn't done at school each day. 


---------------------

This morning at five am I woke up with a tiny space stealing three year old next to me. 

It is nearly impossible to keep Patch in his room and he almost always makes his way into the big bed some time in the early morning hours.

This morning though, he had thoughts that he had to share.

"Mommy," he said in a whisper.  "Your tummy is very big." 

"Mhmm."  I said, squeezing my eyes shut and trying to sleep. 

"Mommy," he went on.  "Three babies in your tummy?"

I assured him that there were in fact no babies in my tummy, but he remains unconvinced. 

He is quite the little confidence booster. 


---------------------

Today an email arrived letting us know that the kids would be dressing up for All Saint's Day at Patch and Sadie's school. 

Patch immediately had to try on his costume from last year.  And both he and I were pretty thrilled that it still fits. 

Sadie, on the other hand, is requesting Saint Therese.  I know her old Saint Therese costume doesn't fit, so I'll be firing up my old sewing machine sooner rather than later. 

She made due with her Saint Bernadette costume from last year, however, for today.


Poor James.  I know he won't be squeezing into last year's Saint Francis costume again.  But he just had to squeeze into the picture.

Saturday, September 24, 2016

Three Years from Her Diagnosis

Three years ago today Maggie was diagnosed with autism. 

That means that for half of her life we've known that she is on the spectrum. 

This morning, I started to think about what this particular anniversary means to me.  And what it means to Maggie. 



It means that three years ago we began piecing together the clues that would help us better understand each other.  It was the start of finding the help that we all needed so that she could grow and excel and be the person that she's meant to be, instead of trying to fit her into a box that she never would have been comfortable in, much less thrived in. 

It was also the beginning of realizing how big the unknown is in our lives. 

Before that September I thought that, one way or another, our lives wouldn't look all that different from any one else's in terms of overall life plans. 

Maggie has taught me many, many things, about love and communicating, and how unimportant words can actually be, but one that comes to mind rather frequently of late, is that she's taught me that I don't know what our lives will look like, day to day and week to week, much less year to year. 



While in some ways, our days are rather uniform, with the same cycle of appointments, in other ways those days can change in an instant.  There are months that have been so, so hard, where I've wondered if we'll ever see a way out of the hardness or if it will always be the same struggle.

And suddenly, just like, those times end and we'll have huge jumps forward, like we've seen lately, where the gains are rapid and everyone on Maggie's team is in awe of all she is and can do and we shoot text messages back and forth detailing those amazing moments throughout the day. 

In the first year after her diagnosis, I began to understand that often those two sorts of months went hand in hand.  A hard month, where everything felt off, and tears seemed to fall by the bucketful, often came before some major milestone.  Other times the hard times and the strides in communicating were simultaneous. 



Often times, over these last three years, people have asked me what I think Maggie will be like when she's an adult.  Will she live with us?  Will she live on her own?  What will we do?

And the answer that I always find myself saying is the same.

I have no idea.  I have no idea what she'll be doing a month from now, or a year from now, much less twenty years from now. 

I would not be surprised if she was a professor at MIT, or using her ample gifts in lock breaking to develop security systems for some company somewhere.  I would also not be surprised if she lives with us, while making the world a more beautiful place on a smaller scale. 

We just don't know. 



And that's probably the one thing that I've learned that I would share with parents and caregivers just started out on this journey if I could.  Just because your two year old is not verbal does not mean that your child will be nonverbal. 

In fact, very little of what we saw when Maggie was three has turned out to be accurate even three years in the future.  Those first tests that were done say things like "is more severely affected than most children with autism that are her age" and "in the lowest .5% of functioning for children her age on the spectrum." 

Those aren't things I've ever shared here, but I share them now, for those who are arriving at that place that I was three years ago, feeling afraid and alone and wondering what the future holds for them.

The truth is, that I don't know exactly what it holds. 



But I'm learning, little by little, taking things moment by moment and day by day.  I've learned by listening to those on the spectrum who have used their voices, often through writing, to tell the world about their experiences, which is a great benefit to everyone.  I've learned by listening to and watching Maggie.  And I've learned by throwing out the idea that communication has to look a certain way. 

This morning, using words and gestures, Maggie managed to explain to me that she wasn't feeling well, and then explained exactly what the problem was.  It didn't look like the conversation I would be having with a neurotypical six year old.  There were lots of gestures and single word phrases before I realized what she was trying to express.

I had to slow way down and really, really listen to what she was saying both with her words and with her hands.  It was a little bit scary because I couldn't understand right away, as I can only imagine it is for those on the other side of things, who are facing a moment when something hurts and that don't have the words to express what is going on to get help.  After about fifteen minutes she'd made the problem clear and I was able to help her. 

Slowing down, really listening, and taking life moment by moment.  Those are some of the gifts she's brought those who love her.



So here we are three years from the day when we first began to get answers.  I can't wait to see what the next three years hold.

Friday, September 23, 2016

7 Quick Takes: Friday Night Maggie Edition

So much has been going on with Maggie lately, and there's so much that I want to remember, that I thought I'd do a 7 Quick Takes: Maggie Edition to catch everyone up.  Here's the latest. 

-1-

Last night while I was in Maggie's room at bedtime she was sitting with me on the floor, chatting about mermaids and Bubble Guppies, when suddenly she looked at me and said "Mass!"  "Mass?" I replied, not sure I'd heard her correctly. 

99% of our conversations revolve around mermaids, the names of her playmates at therapy, food, using the bathroom, and labeling colors.  Most sentences involve one to three words.

"Mass."  She repeated with a smile.  "Jesus.  Joyful, joyful, joyful, joyful, joyful.  Mass.  Jesus.  Joyful, joyful, joyful, joyful, joyful.  Mass.  Jesus.  Joyful, joyful, joyful, joyful, joyful." And then she giggled and I helped her say her prayers before she went to bed, wondering what she was thinking about as she drifted off to sleep.



-2-

Tonight I was sitting with before she went to bed again.  She had climbed into my lap and we were singing about mermaids , but I could tell she was ready to go to bed, and she touched the door to let me know she wouldn't mind if I left her alone to go to sleep.  Before I got up she grabbed my hand and brought it up to touch her forehead.  "Father, Son..." she said before pausing, looking expectantly at me. 

And so I helped her make the sign of the cross and say her bedtime prayers and slipped out of the room so that she could have the alone time as she drifted off to sleep that she needed to decompress from a busy day. 


-3-

Yesterday was Paul's and my tenth anniversary.  It's a doubly special day, because it marks ten years from the day we were married and eleven years from our first date. 

Feeling particularly brave, we took the kids to an early dinner at one of our favorite restaurants. Dining with five kids, eight and under, we've found that sometimes eating an exceptionally early dinner can be helpful, since restaurants are pretty empty if you dine at four in the afternoon (which can be helpful for those with sensory issues too). 

Maggie is actually, generally, our most well behaved child when it comes to eating out.  She is serious about her food, when she can be bothered to eat (which is helped by the fact that she likes going out to eat). 

Just before dinner arrived, however, she started to cry, quietly.  With a few words she managed to tell us that she'd lost her mermaids hair (it's a doll with several colors of hair that click on and off).  Paul took her out to look for the hair in the car, before remembering that it was actually in his car, from their drive to school that morning (in other words, it had been missing since 7 am, but she'd just noticed it). 

She managed to calm down a few minutes later, and was fine by the time the food arrived, but before I'd taken a bite of my spaghetti I was surprised to find that she was attempting to steal it off my plate.  I looked at her, surprised. 

Maggie doesn't like spaghetti.  She doesn't like meat balls either.  She had pizza, which she loves, sitting in front of her.  And she was trying to swipe my dinner off of my plate. 

When I asked her what she was doing, blocking her little fork from absconding with my meal, she made it clear that her mermaid doll, Molly, likes spaghetti.  She held her doll up to my plate and made a tiny clicking sound with her tongue to show that her doll was eating and that Molly liked spaghetti. 

So I took a tiny bit of noodles and put it on an appetizer plate and Molly was able to have her dream meal, while the rest of us enjoyed our little celebration. 


-4-

This is a big deal because, generally, one of the things that you hear when your child is diagnosed with autism is that they struggle with imaginative play. 

While Maggie certainly doesn't play with all toys the way that their intended, her imagination has always been pretty amazing to me, usually involving her using her entire body to act out what's happening. 

If she gets a tiny toy plane, she'll climb up on a table and put the plane down under her, and pretend she's above it, riding it.  If she finds a tiny doll sized mermaid tail, she's putting it over her legs and is immersed in the fantasy that she's a mermaid. 

Her pretending to feed her doll was one of my all time favorite moments.  Even if it did involve my dinner.

-5-

When Maggie gets out of therapy for the day the first thing she does is check on Tessie.  Her entire face lights up.  She still adores James, who has always been her baby, but Tessie is being added to list of absolute favorite people as well. 

-6-

If you follow my page on Instagram, you've probably noticed that Maggie has decided that having her hair pulled back isn't the worst thing in the world anymore. 

And that bows are another wonderful way to express her very creative fashion sense. 

I love it too. I just love being able to see her face:


-7-

I've caught on to something that Maggie does rather frequently when she wants the house to be peaceful.  She'll make it known that she wants to go outside.  Then when I unlock the back door she'll go outside, and will be immediately followed by all the other kids.  

Once their happily playing and out of sight of the door, she'll turn around and traipse back in and go off to enjoy the peace and quiet that she's managed to create. 

I'm kind of in awe of this strategy. 

And after watching her do this around a dozen times in the last month, I have to say, it's got to be intentional. 

She's my little mastermind. 



Monday, September 19, 2016

The Mermaid and The Last Supper

The cheesiness of my mermaid loving child was at an all time high today when I snapped these photos. 

I love her imagination:


What this print of The Last Supper is clearly missing is a mermaid. 


And she has the blue brush that matches her mermaid dolls hard plastic blue hair handy, just in case it needs styling: 


Silliness abounds!

Thursday, September 15, 2016

The Terrible, Dreaded...

There were pretty much three minor(ish) childhood maladies that I had dreaded and somehow managed to avoid thus far.  They were, in order from most dreaded to least

1) head lice
2) hand, foot, and mouth disease
3) pink eye.

As you may have gathered, we had avoided all of them up until this week.  Now we've still avoided #1 and #3 (thank heavens because I cannot imagine dealing with #1 with a child who is terrified of getting their hair wet).  But 2.  The dreaded HFMD. 

Growing up in California, I'd never even heard of Hand, Foot, and Mouth Disease.  I first heard of it when we were in Florida and decided that it sounded like the least pleasant sickness I'd ever heard of.  And I've seen announcements of outbreaks on the news multiple times in the last four years since we moved to Michigan.  And every time I would think "Oh please.  Not us.  I can't deal with that."

It always sounded excruciating. 

And somehow we escaped each summer and fall unscathed. 

Until now.  A few days ago Patch came down with a fever.  After twenty four hours the fever broke and, while he was slightly whinier than usual, he seemed to be back to normal, zipping around the house on his scooter. 

After twenty four hours fever free I sent him off to school.  I noticed he had a rash, about the size of a quarter, but the child has battled eczema since he was a newborn, and so I figured I'd put some cortisone cream on it if it didn't clear up and that would be it. Besides, after a June and July virtually free of mosquitoes, we've been hit hard with them since August and they adore this child.  And he'd spent all afternoon yesterday running around outside, so whatever wasn't eczema was likely mosquitoes. 

I was so, so wrong.

Three hours after Paul dropped him off, I picked him up from school at the end of the three year old class day.  The rash was bigger.  It was around his mouth.  With dread I looked in his mouth and then at his hands.  There were tiny red bumps everywhere.  I didn't have to look at his feet to know what was happening. 

We informed the school.  And then yesterday afternoon I informed Maggie's school that one of our other kids had it, although neither girls show any sign of being sick, just so that they would know to be on the look out in case she started to feel sick.  This morning I received a letter back saying that they had a confirmed case at her school (yesterday). 

This morning at James' genetics appointment he had a fever and the beginnings of the rash... so it looks as if both of our little guys have been stricken by it. 

Patch was hysterical that he couldn't go to school.  James is... kind of happy that Patch can't go to school.  And I'm just praying that the girls, especially Tessie, are spared getting it. 

Because I really don't want to see this little sweetness...


... with it.  Not even a little.  Not at all. 

I suspect Maggie may have had it and fought it off without getting any symptoms.  A week ago she had a few days where she basically slept constantly... and while she never had a fever or a rash, I do wonder. She tends to sleep 20 hours a day when she's sick, refusing food and that's not far off from what happened last week, minus the fever. 

Aside from that, I am curious.  Did anyone else grow up in an area where they hadn't heard of HFMD?  In my head I'm equating it with more humid areas/times of year, just because it seems like that's when I hear about it, and I was wondering if that's accurate or not!

Monday, September 5, 2016

From Homeschooling to Parochial School: The First Two Weeks

Can I tell you a secret? 

Okay I guess it won't really be a secret, at least not anymore, if I write it here.  But I've been thinking about this post as I've drifted off to sleep each night this week, barely able to keep my eyes open at 8:58pm.

The past two weeks were a little tough for me.  And not because school hasn't been great.  It has.  The kids love their new school.  Patch says "Mommy I missed you so much." and "I don't want to go yet." when I pick him up. 

Yesterday he said "Mommy!  Look at this!  In the name of the Father, and the Son, and the Holy Spirit!  Look! Teacher taught me!" while gleefully showing me the sign of the cross that he would previously mumble while barely moving his hand from side to side. 

Sadie came home giddy about Mother Teresa becoming Saint Teresa of Calcutta and could talk of nothing else on the car ride home on Friday, over the moon because one of the teachers had received a letter from her years ago, and they'd gotten to read it in class. 

If I'm entirely honest I have to admit that I've found myself washed back and forth between emotions of happiness and contentment, knowing that this is the best thing for our family and struggling to accept that the vision that I've always had in my head of how things would be, isn't how things turned out.  And sometimes that hurts. 

It hasn't helped that the start of schools is often the start for many homeschools and my newsfeed has been filled with photos of happy homeschoolers working around tables and going on field trips and enjoying empty playground. 

And if I'm honest, my heart aches like crazy, because that is what I wanted for our family more than I can even put into words.  Because I did love homeschooling.  I loved "doing school" around the dining room table and taking fieldtrips every week. 

So I've been scrolling quickly past pictures, nearly identical to the ones I've posted in past years, a lump in my throat. 

It's not like that all the time.  Like when I pick the kids up and they tell me about their day in a rush, and then tumble out of the car to run around together in the backyard, because they've missed each other and they all know that James has been desperate for them to get home, and so he's showered with attention as he runs back and forth across the lawn, the Chihuahua dancing around his feet like a tiny satellite. 

And most of the time it's been too busy to be sad about it for any length of time, it's just a feeling that comes and goes, as I remind myself that this is absolutely and undoubtedly what's best for our kids. 

The thing is that logically, I completely understand that it is what's best.  The last year with it's eight to ten doctor's appointments a month, alongside 50+ therapy sessions (also a month) has taught me that.  I could not to justice to their education while still getting everyone the care that they needed.  But still I find myself defensive when someone comments or messages and says "So, you're not homeschooling anymore?"

No. No we're not.

But then there are days like one this last week when a rather awful day gives me a little bit of grace and burns away that ache with a blinding sort of lightness. 

The day began to unfold the night before when I checked my planner and saw that I'd double booked a morning appointment.  Sadie and Patch would need to be at school at eight.  Maggie's drop off was at nine. 

But right there on my phone I saw that Tessie had her Well Baby Check at 9:30, while I was supposed to be here at home (30 miles away) at 9 am, while James met his new physical therapist for the first time (an appointment that was hard to get during this busy back to school time).  Then I needed to pickup Patch at 11 and Maggie at 12, before getting Maggie over to speech and OT at 2.  Paul would pick up Sadie at 3 and then I'd swing by and get her from his law office before taking everyone home. 

How had this happened?  I knew I'd triple checked my schedule when I made the appointment for PT.  But it had.  So I stayed home with James, while Paul took the kids to school, hauling everyone in and out of the car repeatedly, while I waited and waited for a knock at the door and fretted because I'd never been away from Tessie for this long before and would she even take the bottle of milk I'd managed to express and send with them (Paul had had to go to the store to pick up a bottle). 

Then I got a phone call from a number I didn't recognize.  It was the receptionist at Maggie's therapy center.  Her therapy tech had strep throat and they didn't have a sub.  Frantically I called Paul and told him the news.  He'd just dropped off the older kids and he rushed the thirty miles home to drop Maggie off (juggling Maggie and Tessie at a doctor's appointment would be a disaster because Maggie freaks out in that doctor's office nine out of ten times), before taking Tessie back to town.

Maggie went into a full meltdown the likes of which I've seen only one other time.  She was inconsolable.  She loves therapy.  She tells her therapists she loves them.  And a change in schedule is pretty catastrophic to her day.  It took an hour to calm her down, which I finally did by getting her into a bubble bath.

By then the therapists were late.

Really late.  I began to worry.  I had to get Patch at 11.  I needed to leave by 10:15 to make sure we were there in time.  Finally I checked my phone and discovered that I'd put the time in wrong.  A text message from his early interventionist said that his appointment was at 12:30.  I could actually have been at Tessie's appointment and asked her doctor the questions I wanted to ask.

I jumped up from where I was sitting on the bathroom floor and told a now calm Maggie that we needed to go.  I got her dressed.  I rushed her and James to the car and loaded them in.  We drove into town and I found out that for the first time in the history of the world, our pediatrician's office was on time and Paul was already in the exam room.

I waited outside with Maggie and James and when Paul came out, triumphant, having survived an appointment with Tessie without me, I learned Tessie had happily drunk 4 ounces of milk and was doing quite well. 

We dropped Paul's car off at his office, rushed over to pick up Patch and then went to get pizza and had a pizza picnic in the park, before Paul went to his office and I took the three kids back to our house, where Maggie was again devastated that she was going home and not to therapy, and was sobbing when the two therapists arrived.

She did manage to request another bubble bath as I explained the scheduling drama of her morning that had resulted in the meltdown (thankfully they totally understood), and I ran back and forth between the assessment and explaining James' delays, and making sure she didn't flood the bathroom. 

As soon as the assessment was over, and the once weekly therapy sessions, alternating between speech and PT were scheduled, I loaded the car up again and we raced back to town, making it ten minutes late for Maggie's sessions. 

I unloaded the kids from the car and asked if there was a room I could hang out in with the other kids, since it was so humid outside, and I was about to drop from exhaustion.  Maggie's speech therapist led us into a room we could use, and brought in an enormous basket of toys, and I laid on the floor with Tessie while the boys played cars. 

Those fifty minutes flew by and we were on our way to pick up Sadie from Paul's office, where she'd just arrived. 

As we headed home she told me about her day.  And I couldn't help but think of what her day would have been like if she'd been home with me.  She would have been shuffled from appointment to appointment and now, at the end of the day, utterly exhausted, I would try to come up with something for school.  And this day, with it's seemingly endless rounds of appointments, it isn't all that unusual for us.

As we got on the freeway, headed home, I asked Sadie if she'd made any new friends (a favorite topic for my super-ultra-extrovert) and she talked about some of the girls in her class and then said "Oh and I made friends with a first grade boy.  I played with him at recess.  I could tell that he was really lonely. So I decided to be his friend." 

The next day she explained that she'd gotten him playing Pokémon with the other first grade boys, and that her Pokémon is Pachirisu and that they'd ran around "in the forest" (some trees that are along the edge of the fenced in playground) and were part of a secret club.  "My friends from class," she explained, "like to spend recess on the monkey bars.  And I am not a fan of monkey bars." 

Before that moment, when she said she'd made friends with a little boy because she could tell that he was lonely, I knew, logically that we'd made the right choice.  When she said those words I felt it in my bones.  And heart. 

This transition has been positive in so many ways.  Taking Maggie to the park in between drop offs in the morning and playing with her one on one.  Having one on one time with James while Tessie naps the morning away when Paul takes the kids to school.  Having time to actually clean during the day when I have energy instead of at night when I'm exhausted. 

But knowing something in my head and convincing my heart to give up the dream I had of what life would look like aren't quite the same thing.

Still, I think I've found that learning to let go of my plans, to make way for the plans that are the best for our family, is a growing process that I absolutely have needed to go through.  Letting go of what I thought would be the perfect fit to make way for the plans God has for us, isn't always easy for a person who thrives on making lists of plans and lists of lists of plans, but when the push is so undeniable and the results so filled with a sort of calming hope that can only be grace, I know that we've made the best decision for our family. 

Even when at times I feel that dull ache at giving up my best laid plans, for plans that don't look anything like what I'd imagined, but that are undeniably exactly what we needed all along. 



Tuesday, August 23, 2016

First Day

Someday I will accept that getting my kids to look at the camera at the same time and smile is impossible. 

Today is not that day. 

I tried.  I really did. 

I had this perfect first day of school picture in my head.  All the kids were in it when I imagined it, but Maggie sprinted to the car and wanted nothing to do with my picture taking.  So I convinced these two to pause on their rush to get to the car.  Kind of. 

Smile guys.


Okay can you both look at the camera.


Okay good.  Real smiles!  Happy smiles!  We're going to school!


Over here!  Look at the camera!  Could you stand a tiny bit closer to each other?  Maybe hold hands?


Or maybe not.


Seriously guys.  Just one picture.


Not bad.  But could you maybe scoot a little bit closer?


Almost. 


They had  great first day and can't wait for tomorrow. 

And the only person who cried about dropping these two off?

If you guessed James you would be correct. 

Two more years buddy.  Two more years.


Monday, August 22, 2016

Jamsey

This child.  It's been a whirlwind of a summer. 

Somehow he's spent the last few months collecting new doctors and therapists the way that some people collect Pokémon. 


To be honest, while he definitely has a gross motor delay, I find myself not overly worried about whatever it is that's going on. 

Since I haven't blogged much lately, and to have my thoughts gathered all in one place, so that at some future date I can look back and chuckle that we were worried at all,I'll give a little bit of background. 

Between the ages of three and five months old we noticed that James seemed kind of floppy for his age.  He wouldn't hold his head up.  We needed to support it like he was a newborn (right now Tessie has better head control at seven weeks than he had at six months).  We were introduced to words like hypotonia and hyperflexible by his pediatrician, who kept a close watch on him. He spent an enormous amount of time on his tummy, but it made not difference. 

When he still wasn't sitting up unsupported at ten months, his pediatrician decided it was time to be a little more proactive in making sure nothing else was going on.  He was bombing just about every category on the ASQ (ages and stage questionnaire) by then and as I watched my ten month old, who couldn't sit up in a high chair by himself, I was starting to worry.

His doctor referred him to the same neurologist that Maggie sees and also referred him to our state's early intervention program, where he was assessed and found to have a more than 20% delay, which qualified him for physical therapy.  The neurologist ran a few tests and said to come back in a few months. 

At physical therapy we found that he strongly preferred his left side over his right.  If there was a way that he could avoid using his right arm and leg, he'd find it.  Having a preference of one side over the other isn't a big deal with someone who's older, but it isn't supposed to happen with someone who's teeny tiny. 

After watching the left side preference and low tone for almost a year, James' neurologist sent him for an MRI.  And after one very long day and a weeks wait, I got a call from an assistant at the neurology department telling me that everything looked fine except... (the next few seconds were some of the longest in my life) he had a sinus infection (sigh of relief) and I should call his regular pediatrician so that we could see if she thought it needed to be treated (by then it didn't). 

A few months ago his physical therapist and neurologist decided he needed orthotics.  He'd started walking a little after eighteen months, but his feet turned in and his ankles rolled in wildly, making him trip every few steps.  In the beginning his entire right side would give in, causing even more falls, but that's improved drastically in the last couple months, although he still falls every minute or so. 

A few months ago his neurologist and pediatrician both decided separately that they would be writing referrals for genetic testing and in September he'll finally get in to see the same geneticist that Maggie saw in April (we're still waiting on test results to process for her). His neurologist doesn't want to do anything until the genetic results are back.  After spending five minutes trying to get a single reflex response from James knees and ankles and getting absolutely no movement he mentioned a test involving sticking needles in muscles to see how they're working, but we're avoiding that at all costs, since he said it'd be pretty unpleasant. 

This week he'll be seeing a orthopedic specialist to make sure there's nothing else that needs to be done about his toes insisting on pointing in.  He's also been seeing an early interventionist (kind of a general therapist who works on gross motor and fine motor and speech and social skills with him) and will meet his new physical therapist this week.  And most recently there have been suggestions of adding OT to the list, which I'm hoping he doesn't need... but will go along with since I know that therapies at this age can mean far less therapy later on. 

In a lot of ways it's odd because he's the polar opposite of Maggie, who took her first steps at ten months and was climbing up on top of Sadie's giant bouncy horse and riding it when she was barely one. 


Still, as I watch the determination with which James has faced these challenges that seem just a little tougher for him than they are for everybody else, like rolling over or sitting up or walking, I can't help but feel like it's all going to be okay.

Although if you want to throw up a prayer that maybe he stops adding new doctor's appointments to the schedule, and keeps growing healthy and strong, I would most definitely appreciate it. 

Sunday, August 21, 2016

A Big Deal

There was a little moment today that is imprinted on my mind.   It only lasted a few seconds, and I doubt anyone else realized what was going on, but I did and for the rest of the day I've thought about it.


Today was a barbeque at our new parish and for the first time in a very long time we decided to go.  Without the food allergies it was an actual possibility.

There was a tent with tables set up under it a short distance away from the school's playground.  We walked the kids halfway to the playground, which is fenced in, and told them to go play while we walked back to grab plates and food. 

We thought that the easiest thing to do would be to get the food and a table and then call them over, letting them get their wiggles out after Mass before we sat down to eat. 

Patch noticed immediately that we weren't over by the playground and came sprinting over to stand in line next to me. 

I had my eyes glued to Maggie while I waited and suddenly I saw her stop and look around and realize that we weren't right there watching her. 

And she turned around and ran back towards the tent.  I watched for a few seconds as she got closer and her eyes swept back and forth through the faces of the people already at the tables, searching for us. I said "Maggie!" and she saw us and Paul walked over and she held his hand and walked to a table and sat down. 

This is huge.  Since Maggie was a tiny baby she would take off and not look back.  When she was ten months old I watched her as she crawled off across a field, to see how far she would go, and she simply kept crawling, totally oblivious to the fact that she was leaving me behind.  When she eloped last summer she didn't seem concerned with being out in the forest on her own. 



She has always seemed to be totally unconcerned with whether the rest of us were coming with her when she was attempting to go out on her own. 

So noticing that we aren't right there with her and coming to look for us is a milestone that felt incredibly far off, not all that long ago. 

I won't be throwing out her GPS anytime soon but still... baby steps!

Saturday, August 20, 2016

Goodbye to Allergies?

Earlier this week I realized that the apple sticks I'd been buying had wheat in them.  I couldn't believe I'd made that mistake.  I check labels compulsively.  I recheck labels that I've already checked a dozen times, because time has taught me that labels can change and that just because something was dairy free last month doesn't necessarily mean it's dairy free this month. 

This wasn't a mistake like that though.  I've been buying veggies sticks at Aldi for months now and they're gluten free.  The apple sticks were in the same sort of packaging and for some reason my brain just assumed they were okay. 

In the last month both Sadie and Patch have outgrown their allergies.  It's been amazing.  When the allergist called and said the retest for Sadie showed no allergies at all, and that we could start gradually reintroducing foods and see what happened, I was ecstatic.  And Patch will still get sick if he has regular cow's milk (which he despises) but all the other dairy products he's tested out have been fine. 

Still, I was afraid to even try gluten or casein with Maggie.  You see, she never tested as having allergies like the other two.  She would just get really, really sick every time she ate even the tiniest amount of either food.  The first three times it happened I was still skeptical.  But then it happened like clockwork after every exposure, and I realized that she really, really couldn't have almost all of her favorite foods. 

There were times when she managed to sneak a tiny bite of something with wheat in it, and I'd forget to mention it to her therapists and would get a call a few hours later asking if she'd had gluten because they could tell.  It happened over and over again (as she'd usually manage to sneak something every three months or so) over the course of the last three years, at more than one office. 

So I was stunned when I realized that she'd been eating apple sticks, made primarily from wheat, for a week and a half and hadn't had a reaction.  I quickly texted her main therapist and asked if they'd noticed anything in the last week.  She said that they hadn't, that Maggie was doing better than ever. 

And so we decided to see if she'd outgrown her allergy and that night I let her have three graham crackers. 

I waited.  Would she be up all night sobbing because her stomach hurt?  Would she lose all the words that she has and cry non stop for the next two weeks? 

The answer, for the first time in three years, was no.  She was fine.  When I tucked her in she ran through the names of the Bubble Guppies on her backpack, pointed out and labeled all the colors on it, and then asked if we could go to the "swimming beach."  When I said no we couldn't, it was night, but maybe we could ask Daddy if we can go soon, she asked to go to Daddy's office.  She hasn't even seen his office yet, which added to the general shock I was feeling having just had the longest back and forth conversation (by far) we'd ever had in her entire life.  So we called Paul and asked if she could come see his office soon and she repeated "Daddy's office?" a half dozen times before drifting off to sleep. 

Since then I've let her have a tiny bit of cheese.  He therapy tech said she had another great day, with a huge amount of language, and that she'd been trying to  run her own therapy program, but that she had been a little emotional.  Since emotional days happen now and then anyways, the jury is still out on dairy, but we had another rather long back and forth conversation at bedtime, and so I'm cautiously optimistic. 

I'll admit that this has brought up some questions though. 

Before we moved to Michigan, into an old house built in the 1920s, no one in the family had food allergies.  After living there for a year, all three of our kids had food allergies.  And we were all sick constantly. 

Over the course of the time that we lived there the basement would flood every year (not a huge flood, but a steam going from one side of the basement, through a wall, to the other), along with the yearly backing up of the sewer when the tree roots would grow into the clay pipes, which meant another flood.  I was constantly battling mold with bleach after the floods.  I wouldn't be able to see any mold after I was done cleaning, and everything would look fine, but I wondered.  And worried. 

We've been out of the house for four months now and the three kids who had allergies while we lived there all seem to be allergy free.  No one has been sick since we've moved.  In fact, I feel ten times better than I've felt in years.  And I can't help but wonder if somehow it's related.

I asked Maggie's neurologist at her appointment last week and he said we probably would never really know.  But I can't help but wonder.

Now to make a new meal plan and a new shopping list (that will be spectacularly less expensive).  I'm pretty giddy.  This means we can do things like church picnics and doughnuts after Mass and all the things that were little family traditions that were so hard to give up.

Friday, August 19, 2016

7 Quick Takes Friday: Mini Update Edition

-1-

Things have been busy around here.  I'm eleven pages out from finishing the third proof read of the book, which happens to be the last one I'm doing before sending it out to agents.  I've been working on query letters, which for some reason is more intimidating than actually spending a year and a half writing the book and proof reading it (and if anyone knows an agent who represents fantasy authors...). 

-2-

Tessie continues to try to prove that she's the most laid back baby we've ever welcomed into our family.  She first shocked us by sleeping nine hours at three weeks and has continued to do so, while growing like a weed, for the last four weeks.  She's wearing six month clothes now and I packed up the teeny tiny clothes last night while lamenting that she can't fit into them for a bit longer. 

I should probably mention that a certain eight year old woke up basically every hour for the first eighteen months of her life... so I like to pretend that a baby that sleeps like this is a reward for surviving the colic/reflux sleeplessness that was 2008-2009.  I think anyone who has another child after surviving a high maintenance baby should be awarded a good sleeper the next time around. 


-3-

Paul is in the process of opening his own law firm, has started working doing sub contracting for another lawyer, and is fitting all this in while continuing to work at his other job.  Which has made the schedule a little extra crazy lately. 

I really, really wanted to post a picture of his office, which looks great, but he's in the car driving from one thing to another right now so I can't ask him if that's okay... so I guess it will have to wait for now.

-4-

When he's not around I'll admit I do kind of feel like I deserve some sort of a medal when I load or unload all five kids in and out of the car together. 

A couple weeks ago I took all of them into a store together, by myself, and it was kind of like putting a circus on top of a shopping cart and pushing it around a store.  At least it was if the looks we got were any indication. 

Although I can't really blame anyone who starred, considering the fact that us walking around anywhere (or driving, or sitting, or breathing...) is basically always accompanied by a play by play commentary by Patch, who is a pretty hilarious little kid. 

An example of this would be when we're walking through the super market and I hear Patch say (in that loud voice that just doesn't get any quieter despite multiple "indoor voice" reminders):  "You need go pee pee in the potty Mommy?  Pee pee in the potty?  You have go pee pee in the potty if you want to go to school Mommy!" 


-5-

Patch got to visit his preschool this past week and James cried all the way home (although Patch was in the car with us) when we had to leave.  He even told me "bye bye" while settling down to play with a toy.  I don't think he's going to be thrilled when the first day of school arrives and it's just me and him and Tessie on our own. 

-6-

I think I'm almost halfway through unpacking the boxes in the garage.  I've realized as I've unpacked that roughly half the boxes in there are filled with books. 

And after seriously searching at thrift stores and garage sales I finally found two chairs that I love that make the living room look a little less empty.  Here's what it looks like at the moment:

video

James thinks that this chair is his:


-7-

 Sometimes, when the newness of a new baby has worn off a bit for the older siblings, I forget how carrying a brand new baby through the house is a bit like walking around with a celebrity.  Right now we're still in the thick of things: 


Patch is especially smitten. 

And even James is pretty fond of her.

I knew both girls would be crazy about her, but I didn't quite anticipate how sweet the boys would be:


video

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