Monday, November 14, 2016

A Quick Commercial Break with Maggie

I posted this on the blog Facebook page, but I wanted to post it here too!  Maggie and I did an interview for a commercial for the therapy program that we did at MSU and today I saw it for the first time.  She's so tiny!

This was filmed about a year ago, but if you see the Skype video that is briefly shown it's from when we first started the study when Maggie was three!  I can't believe it's been three years!

Sunday, November 6, 2016

Tessie: An Update

I thought that it was probably just her eye sight right up until the moment that we went through the list of milestones during her early intervention evaluation.  Or at least I hoped that it was. I wanted it to be her eye sight.  I wanted her to be a little far sighted and just need a cute pair of glasses that would solve the problem.
Sure, we'd have to probably replace them seventy times before she was two, but we'd figure it out.  Can you buy insurance for eye glasses?  If so we would have done it.  

When someone suggested that it wasn't her eye sight I almost exploded.  No, no, no.  Don't you know what it very likely is if it's not that?  I do.  

It's not that having a child with developmental delays, and in our family's case autism, isn't a blessing in many ways.  But the knowledge that you're child is going to face some pretty major struggles, in a world that refuses to accept and often fears them, is in some ways heartbreaking.  

Watching your child struggle to be accepted and even be the object of scorn?  It's hard to get past. And while it's the world to change I fear every day that it's not changing quickly enough.  In fact I know it's not.  

Parents please, please I beg you.  If you can teach your children one thing, teach them to kind to people who are different.  The world doesn't need more people striving to be famous or powerful.

Our world needs more people who are kind.  

Of course, nothing can be certain for a while yet.  There are no tests for autism before eighteen months of age.  But the red flags are everywhere.  

The first evaluation, quickly showed that something more than bad eyesight was going on.  It wasn't that she wasn't able to see up close.  It became abundantly clear as one and then two therapists evaluated her that she was avoiding all eye contact.  

Someplace in my mind I think I already knew.  

When she nurses she looks away.  When I try to catch her eye she quickly averts them and turns her head to the sign.  She smiles, looking just over my shoulder or, on a good day, at my forehead.  Not at my eyes.  If I catch her, move my eyes into her line of sight she quickly turns and squirms so she can't see me.  

Maggie didn't do this.  She stared at my eyes and laughed.  I've read about this, but I've never seen it first hand.

They rang a bell off to one side of her head.  She sat perfectly still.  They rang it on the other side.  Then on the first side again, closer.  It was practically next to her ear, and loud.  No reaction.  A loud banging side on either side and again she didn't even blink. This is... significant... I heard.  

How could it not be?  

As these therapists, who are James' therapists and who are good at what they do, worked for an hour to get her to do the most basic of actions for a baby her age, my heart sank.  And had I seen her demonstrate any of these actions?  Does she grab a toy?  Can she shake a toy? Does she reach for a toy or look at a toy?  Does she watch her hands or react at all when she sees herself in a mirror?   

In the gross motor category she knocked it out of the park, doing things in older categories, but in social communication she wasn't hitting the milestones in the one to two month category.  At four months.

She qualified.  I sat, talking about how she probably wouldn't qualify, and I totally understood that they wouldn't qualify her, after all how can a baby that's so little already have a significant enough delay, but she qualified easily,  over and over again in each category.  

When they left I brought up the ASQ Oregon site, which allows parents to take the Ages and Stages Questionnaire that our pediatrician's office uses online and get the results scored online.  The results came back as expected:

Your child's scores in the areas of (Communication,Fine Motor,Problem Solving,Personal-Social) are, at this time, below the cutoff and may indicate that development is not on schedule.

And there was another worry that had popped up.  She sleeps a lot.  Impossibly much.  Twenty hours a day.  That morning I woke her after she slept for thirteen hours, to make her eat and get ready for her evaluation.  

When the therapists left, having scheduled her first session, and while the boys played upstairs, I called the nurse's line at our doctor's office and left a long rambling message.  They called me back and agreed that our well baby check which was still two weeks off was a little too long to wait and scheduled us for an appointment.  

On November 2nd we went in.  The doctor came in and examined her and talked with me about what was going on.  I explained the results of the evaluations and what I'd noticed.  I told her that I'd thought I was just paranoid, because of what we've gone through with Maggie and James, but that now, with the evaluations I was beginning to wonder if it was something more.  She tried and tried to get Tessie to look at her, with little success.  Tessie glanced at her face once and then quickly looked away.

And then she said "I'm sorry, this is heartbreaking." and began to explain that they wouldn't be able to definitively test until she was eighteen months old, but that with the family history and significant delays it is likely that we're headed in the same direction, but that this is absolutely the earliest that we could have noticed and that she will receive the very earliest therapy possible.  

"You're doing everything right.  You're doing everything you can do.  Not much is available this young because the testing doesn't exist."

I was stunned that she saw what I saw.  I don't know why.  I was clinging to the idea that I was just paranoid.  I had convinced myself that the concern I felt when she was three weeks old and I would try to catch her eye and she would turn her head, was just an abundance of over caution.  After all three week olds don't usually make eye contact.  But they don't usually avoid it either.  

We started therapy this last week.  She's been referred to our family neurologist (who sees Maggie and James).

I am processing this all again, and in some ways it's easier and in some ways it's harder.  It's easier because I'm not afraid of who she is or who she will become.  Maggie is one of the most amazing people I know and she has taught me so much in her short six years on this earth.

But it's harder because I have a clearer idea of how the world treats people who are different than what passes for normal, and of the challenges that she will face in a society that is often cruel to those who are different.  When it's acceptable to publicly mock the disabled for their differing abilities and be defended for it, it's hard to feel confidence in the world these children of mine will be growing up in.  When people are praised for "terminating" children who have conditions that make them seem less than perfect, I fear for those children who grow up with similar labels and conditions.

And that is the part that breaks my heart.  

I haven't really paused since then.  I called Maggie's therapist and the friends we've made at the local university and everyone is brainstorming ideas for things that we can work on and ways to help Tessie move more easily through this world so that she can become the person that she is meant to be.  
But in some ways, this very real possibility has made these days sweeter.  I cuddle up next to her and kiss her head and smell her sweet baby smell and think of how easy it is right now, just to be, just to exist and savor every moment of the day.  

I don't need advice about "cures."  I don't need to hear about the latest diet, or have anyone use the word "recover" when speaking about my children.  They aren't lost.  They're right here, and they are every bit of who they were created to be.  

So we wait.  And we don't.  We're busy doing the little therapy exercises that a four month old can do and I try not to google the stories that tell me that studies have shown that a lack of eye contact in the younger siblings of older children with autism has been found to be significant at two months of age.  

Maggie adores Tessie.  And if Tessie follows in her big sister's footsteps I can only hope that she might have a little bit of an easier time with a family that has already walked this way before and will hopefully understand her more fully at a younger age.  

I'm not sure how to end this post, which has already rambled on for so long except to say that your thoughts and prayers are appreciated, in fact I'm certain the prayers of those of you who knew bits and pieces of what's been going on have carried me through the lows and highs of the last few days.  

Now to get ready to take these little ruffians to Mass.  

Last night Maggie (who asks every single day of the week if we're going to Mass) smiled when I said that tomorrow was the day and then said "Church.  Mass.  Jesus.  Doughnuts."  She giggled when she said doughnuts and then repeated it two more times.  

Maybe Maggie and Tessie will be two little mermaids in a pod.  Time will tell.  

Thursday, November 3, 2016

Mermaid Soap: The Greatest Invention Known to Mermaids

"If something were to ever happen to me, you need to know this."  I say the words and Paul shakes his head, but I continue anyways.  This happens a couple of times a year, when a daily ritual becomes such a big deal to Maggie that it becomes set in stone, a part of our day that simply can't be replaced.

 Every morning Maggie takes a bath filled to the brim with mermaid dolls.  I get the other kids dressed and ready in the bedroom and then she sprints in, half wrapped in a towel and excitedly proclaims "Mermaid Soap!  Mermaid Soap!" to the assembly of children searching for shoes and sweaters and that other sock that was in my hand three minutes ago.

"Dry off!"  I say and she repeats the words as she scrubs at her arms and legs with a towel.  "I can't put on Mermaid Soap if you're still wet!"

Then I turn and very carefully slip the jar of Vaseline and Crisco off of the window sill. I keep it hidden behind the curtain. The recipe was given to me by Patch's allergist when he was small and is simple.  It is 1 part Vaseline to 1 part Crisco.  He told us about it after we'd tried every over the counter eczema treatment available.

I'd slathered Patch in coconut oil and every natural remedy I'd heard of when he was tiny, but nothing worked until the doctor gave us that suggestion and I skeptically went to the store and picked up the supplies and mixed them together in the kitchen.

Suddenly he had the softest baby skin I'd ever seen.

So every year when winter arrives and dry skin comes with it, I put together the concoction again and begin to apply it liberally to try legs and elbows.

I have to keep it hidden though, to keep Maggie from covering herself in it from the top of her head to the tips of her toes (Vaseline and Crisco do not wash out of hair easily, if you've never tried it and were wondering).

"Mermaid Soap!"  I announce each morning as I put a generous ball of the moisturizer into the palm of my hand.  Now for the important part.

"Mermaid Soap for mermaid lips.  For mermaid words.  For mermaid songs."

After that it's time for the story.

"It isn't easy for mermaids to speak when they're on land.  It's not easy at all.  And so we have mermaid soap which makes it easier to mermaids to have words and sing their songs when they aren't in the water.  Mermaid Soap for mermaid words and mermaid songs."

I started doing this when her lips were dry and cracking about a month ago and we were battling every morning as I tried to apply chapstick.  When I began using "Mermaid Soap" she was still skeptical until I told her that they were for mermaid words and the story grew from there.

Maggie points to her stomach and then helps me cover her arms and legs in the ointment while I continue the story.  "Mermaids dry out when they're on land.  This keeps that from happening.  This keeps mermaids from getting too dry when they're out of the water."

"Mermaid soap!  Mermaid soap!" Maggie says the words happily then, after getting dressed hands me a brush.  "Mermaid bow?"

Yesterday when I picked Maggie up her therapy tech told me that she has been using so many new words, a statement I've heard almost every day lately.  I'm sure Mermaid Soap is only a small part of the puzzle.  Maggie has been working hard to make us understand her for her entire life and all the hard work she's put in is paying off.

But I can't help but think that Mermaid Soap plays a little role in helping the words come a little more easily but giving her a little extra confidence boost as she starts her day.

And Paul, now you have the script for Mermaid Soap Mornings... just in case.

Wednesday, October 26, 2016

On Locks, Pick Pockets, and Super Powers

I'm expecting to have pink eye just about any time now, and praying that I somehow manage to avoid it the way I somehow avoided the plague that is Hand, Foot, and Mouth disease that swept through our house.

I thought I might stand a chance at avoiding the miserableness that is conjunctivitis until a certain child, who may remain unnamed, was cuddling with me after her doctor's appointment and reached up rubbed her eye and then, with the same hand, reached over and touched my eye (before I even had a chance to lift my hand to redirect her or shout out a panicked "no!"). 

The seventy-five times I'd washed my hands since breakfast, in scalding hot water for longer than it took me to hum the Happy Birthday song, suddenly seemed rather pointless.

Kind of like 98% of the locks we've purchased in the last four years. 

Yesterday morning while I was getting ready I realized that the key to the downstairs outer doors was sitting on my bookshelf. 

You see, after Maggie defeated every type of lock on one wall of the lock aisle in Home Depot, we finally broke down and opted for double cylinder locks to keep our little eloper from venturing into the outside world on her own. 

The man who sold me the locks was pretty sure I didn't know what I was buying when I picked them up.  I knew that he wanted to save me (or more likely Paul) from a return trip to the store when I realized that the lock needed a key to open either side.  I reassured him that that was actually exactly what I wanted, but I think he still expected to see me back there later that day, getting normal locks that only require a key to get into the house instead of out. 

I'd been against double cylinder locks for a long time, because I honestly hated the idea of them.  But the alarms on the doors only gave me partial peace of mind, and once Maggie mastered all three of the locks on the front door I knew it was time to look into something else. 

Now, however, I love those double cylinder locks almost as much as I love the six foot security fence in the backyard.  I now know that I won't hear the alarm sound while I'm in another room changing a diaper.  So I carefully keep the key with me at all times and this new system has worked remarkably well. 

Until yesterday when I put the key in pocket and then heard Lily barking to come inside. 

I ran downstairs and put my hand back in my pocket.  The key was gone.  I backtracked.  Was it on the bookshelf that I remembered taking it off of?  No.  Had it fallen onto the bed?  No again.  Was it in the bathroom?  On the other bookshelf?  In the hamper?  On the floor? 

No, no, no, and no. 

As I searched Maggie drifted along after me, her little pink half pony tail bobbing happily as she walked. 

Finally I gave up and found a back up key and let the dog in. 

Five minutes later I heard Sadie saying "no, no, no" from downstairs.  Twenty seconds after that she was racing upstairs with my keys in hand to inform me that Maggie had them and was making a break for the outside world. 

Apparently pick pocket has been added to her (impressive) repertoire of skills. 

Maggie's super power is easily defeating every security measure I put in place.

But she wasn't done yet (for the week I mean... I'm not na├»ve enough to believe she's anywhere near to giving up her security system defeating skills in general...). 

This morning we were driving into town.  I'd loaded Tessie and James in the back and then snapped her into her seat with the new seat belt lock that one of her therapists suggested.  I noticed yesterday that she had cheerfully helped me hold the lock in place while I snapped the buckle closed, something that I'd found rather odd. 

Maggie doesn't usually like me to close locks.  Unless she knows that she can open them.

After months of practicing she sits very well in her booster, but suddenly, after a successful initial time period in the "big girl seat" she began unbuckling it when I stopped for more than 5 seconds, or any time Tessie cried.  The buckle lock was the perfect solution. 

The lock is plastic and rectangular with a series of slots that locks on over where the seat belt fastens, making it impossible to push the red button down without using a tool. 

It worked for a solid forty eight hours, but I noticed that Maggie was carefully watching me as I used the popsicle stick that came with the lock, to pop it open when it was time to get out of the car. 

As we reached Paul's office and I put the car into park I heard the buckle pop open.  I turned and saw Maggie holding her slap bracelet in her hand, looking entirely innocent as she took Paul's hand. 

"Did she just use that slap bracelet to open the buckle?"  I asked, wondering if I'd imagined locking the thing in place.  Had I been too distracted by the babies and forgotten to secure it in the first place?

I carefully made sure to secure the lock on the way home.  This time her bracelet was sitting on the front seat next to me, where it couldn't be used to open the lock.

I didn't count on her smuggling a back-up-spoon on her person, however. 

She waited until I'd parked the car in the driveway to demonstrate her new found skill.  As I lifted Tessie from her car seat I heard the buckle pop again as she used the spoon to press down the red button between the slots. 

At least she waited until we got home. 

And can I say that as she gets older I hope she uses her powers for good and not evil?  Because if six year old Maggie can break every lock at every hardware store I don't even want to think about what ten, or twelve, or twenty year old Maggie is going to be able to do. 

She is amazing.  And as annoying (and sometimes scary) as it can be trying to find a lock that she can't get through, I can't help but be a tiny bit proud of how good she is at figuring things out.  Although I may not feel that way if she graduates to actually being able to pick that double cylinder lock without a key.

Saturday, October 22, 2016

Tessie's Eyes

I was worried about Tessie.

I knew that Paul thought that I was crazy. 

"She doesn't look at me."  I'd been saying since she was a month old.  "She smiles, but she's always staring off over my shoulder."

"I don't see it."  He said. 

But I did.  I'd lean over her bassinet and try to catch her eye.  I'd cradle her in my arms while she nursed and she'd look past me, rarely making eye contact. 

Was I just paranoid?  I asked myself.  Yes.  Partially.  I mean, it's impossible not to be after the last six years.  I am especially alert when it comes to developmental milestones.  How can I not be?  But that didn't mean that something wasn't off, did it? 

Still, with the exception of mentioning it to Paul and the pediatrician at the one month appointment, I kept my concerns to myself. 

One day when James' physical therapist was here, Lily was barking not far from where Tessie was sleeping.  "Is she really sleeping through that?" She asked.  I said that she slept through everything.  Paul had used a screw driver and a hammer in the room with her and she hadn't batted an eye. 

I knew that she could hear, I explained, because sometimes the smallest sounds startled her, but by and large, extremely loud sounds didn't phase her. 

She suggested that day that I refer Tessie for an evaluation, at the very least to check her hearing across different wavelengths.  It could just be that she was used to loud sounds.  But it could also be a cause for concern.

In the days that followed I watched Tessie and continued to fret every time she didn't look at me as I attempted to capture her attention. 

The next week I took James to his early intervention playgroup.  Patch's speech therapist from a few years back was there and I asked her if she could hold Tessie while I signed us in.  I told her about the physical therapist's concerns and she continued to hold Tessie and walk around with her for most of the hour that we were there. 

At the end of playgroup she brought Tessie back to me and finally, and for the first time in the whole hour, Tessie looked at her face and smiled.  She told me that she thought an evaluation was a good idea, because of that lack of eye contact, and I knew that they were both right. 

When James' early interventionist came last week I made the appointment and this week she came out so that I could fill out the paper work and so that she could do the initial part of the evaluation and see if a further evaluation was warranted.  Throughout the hour Tessie seemed to avoid looking at us.  She was happy and calm.  She smiled now and then.  But she studiously seemed to avoid focusing on faces. 

I explained that this was entirely new to me.  Maggie loved smiling into our faces when she was tiny. 

She had me hold Tessie on my lap and try to catch her eye.  Tessie turned her head from side to side and refused to look at me.  We tried different angles but Tessie seemed determined not to look at my face. 

At the end of the hour the therapist told me she was pretty certain that Tessie would qualify based on her refusal to make eye contact.  She managed to catch her eye for a few moments, but then Tessie would immediately look away again.  We scheduled an appointment for rest of the evaluation and I continued to watch Tessie and wonder what was going on with her. 

On Thursday James had PT again, and for the second half of the appointment Tessie sat on my knee.  "She's looking right at me right now," his therapist said.  "This whole time she's been watching me and making great eye contact from across the room."  I brought Tessie closer and from a few feet away she smiled and cooed at the therapist.  "I wonder if it's just a matter of finding the right distance" she said. 

Last night, after failing to get Tessie to look at me for most of the day I put her down and stepped back.  When I was a little over three feet away I saw her face light up.  She looked straight at me and smiled and cooed. 

I stepped forward.  As I stood next to her bassinet her smile faded and she began to look around, focusing mostly on the light on the ceiling.  I bent towards her and there was no sign of recognition on her face.  I stepped back again.  At the same point, a little over three feet away from her, she beamed up at me, again focusing on my face as she smiled hugely.

Moving forward one more time to test the theory again I could see the moment when she lost me and began looking from side to side, clearly not seeing where I was. 

All day today the situation repeated itself.  When I'm near to her she smiles at my voice, but looks around as if she isn't seeing me.  When I take an extra step back she focuses easily on me and makes eye contact. 

And that explains why Paul kept saying she was making eye contact with him.  He's about a foot taller than me and when he stands over her bassinet he's a foot further away.  She can see him more clearly since he's further up, even when he's standing next to her. 

I still find myself surprised every time I move back into her line of vision and I can tell by her expression the exact moment that she sees me.  We were already discussing hearing and vision tests, but now that vision test most definitely seems like it will be a priority. 

Thursday, October 13, 2016

Happy 2nd Birthday James

He is my smiley, silly, cuddle bug. 

But he also has a habit of frowning at the camera, usually right before bursting into a fit of giggles.

Over the years though I've captured quite a few of his frowns and so today, on his second birthday, I had to share them with you.

Happy 2nd Birthday James!  We love you!

Wednesday, October 12, 2016

Patch's Stroller Life Hack

This afternoon as we headed to the zoo I had no idea that I'd picked something up at the store that would totally make Patrick's day.

It was a large stroller bag hook. 

My sister gave me one a couple of years ago, but I always forget to move it from one stroller to another, so when I saw one today for $5 at Walmart I thought I might as well pick one up so that each of the strollers can have their own hook.  When I unloaded the car I snapped it into place.

Patch saw it and gasped.  "Mommy!?!?!?!  Mommy!!!!!!  You got this for me?!?!?!  Just for me?!?!?!?!  For my birthday?  Is this my birthday present?!?!?!  Thank you Mommy!  Thank you!" 

You see, he thought that I had bought him his very own handle to hold onto the stroller when we were walking. 

Quite often he wants to hold onto the stroller bar that I push, which inevitably results in me tripping over his feet every time he slows down. 

This is the perfect solution.  He proudly held onto it as we walked around for much of the afternoon.  Sometimes he wouldn't hold onto it, but it was perfect for times when I wanted him right next to me. 

And that is Patch's great idea for the day.  I don't think I'll get much use out of the hook as a bag holder but I do think it's going to be used daily as a preschooler wrangling device.

Also here's Tessie being her little Pumpkin self.  I love October.


Tuesday, October 4, 2016

Who's Who at 3 Months

Tessie is three months old!

And I can never decide who I think she looks like.  Sometimes I think Sadie.  Sometimes Patch. 

Can anyone name that baby in this lineup of 3 month olds?

Grumpy Baby gives himself away with his grumpiness.

Sunday, October 2, 2016

Cry Rooms, Nurseries, and a Change of Heart

In the beginning, I was anti-Cry Room. 

Now I should start by admitting that I had no actual Cry Room experience.  In my first almost-decade as a Catholic we'd never belonged to a parish that had a cry room.  I'd sat in confessionals and bride's rooms and in a little room outside of a bathroom.  I'd lingered in vestibules and stood outside in heat and bitter cold and all sorts of temperatures in between.

Sometimes people have asked what Paul was doing during these Masses. Much of the time he would have Maggie and I would have the boys since they cried less when they were with me.  Although over the years we've done different variations of our divide and conquer strategy.
But I'd heard the stories.  Unfortunately, when Cry Rooms exist, some people in some places seem to think that all kids belong in them.  And there can be a lot of pressure on parents to take their children to these rooms, when a child makes even the smallest of peeps.  Which of course, isn't right at all. 

For the last four years, before we made our move, I had spent all but maybe four Masses outside in the vestibule of our old parish, behind big glass doors.  The kids couldn't see very well what was going on inside, which made the seventy to ninety minute Masses feel even longer.

And we had many days that were very, very hard (have you ever been kicked hard in the nose during Mass and known that it was broken again?  I have...) and very, very discouraging and there was a year somewhere in the middle of all this when I really didn't want to go to Mass at all.  When James was a tiny baby, thinking about Sunday made me want to cry. 

I dreaded it, knowing that Patch would be crying and James would be crying and I'd have to fend off other little kids offering Maggie snacks that she was allergic to.     

For the last year I would send Sadie in to sit by herself in the front.  Maggie would start to make loud happy sounds when we went inside, and Patch and James were both at difficult stages as well and someone was always in need of correction.  Wrangling them was a two parent job. 

It wasn't ideal, but it also wasn't as bad as it had been.

But now we are at a parish with a Cry Room.

In my head, when I think those words, I imagine a little melody like choirs of angels singing. 

No one pressured us to use it.  In fact, there was a bit of pressure not to use it.  At our first Mass, Paul asked the lady who opened the door for us if there was a Cry Room.  She said there was, but that we needn't go there.  There was a little chapel off to the side with a glass wall, she explained, please only use the Cry Room if we really needed to. 

Of course, she couldn't have known that we basically always need it. 

We tried the chapel for a solid month.  After a particularly trying day I told Paul that that was it.  We were trying the Cry Room out.

It was nothing like I'd imagined.  The room is off to one side of the altar.  There's a large glass window with a kneeler.  When Sadie, or any of the kids, kneel there they get an up close view of what's going on during Mass.  And even from the neat rows of seats the view isn't bad at all. 

Mass is still chaotic for us.  For anyone reading who doesn't know our family, we have an eight year old (the only person I don't worry about during Mass), a six year old with autism, a not-quite-four year old, an almost-two year old, and a three month old.  That means that there are four kids who might act up/scream their lungs out at any given minute. 

I find myself helping one child or another to behave themselves roughly every sixty seconds during Mass.  Some days it is literally non-stop for the entire Mass.

But for the first time in four years, I'm actually able to be mentally present for a good portion of the Mass.

And more than that, so are the kids.  We can hear and see what's going.  And that's huge. 

Since we've started going to the Cry Room, Maggie's conversations with me have shifted.  Before this change, 98% of our conversations revolved around mermaids.  Now about half the conversation topics she brings up are about Jesus.  She wants to sing about him.  She wants me to help her make the Sign of the Cross.  She says "Father, Son?" and then struggles to copy me when I say "Holy Spirit." 

And more than that, she asks about Mass every single night. 

Even Patch is beginning to behave for a far greater portion of the time than he did before.  At the last Mass he knelt next to Sadie, and this time it wasn't just to try to annoy her. 

Last week the nursery opened it's doors for the year, in the room right next to the Cry Room.  And we dropped the boys off and went through the door to the Cry Room for Mass. 

Now the Cammie of seven years ago would likely be horrified by this.  The Cammie of seven years ago would tell me that children belong in Mass.  And they do.  They really do. 

But the me-of-today also understands that sometimes there are extenuating circumstances.  The me-of-today gets that different things are best for different families, and the me-of-today actually believes it when I say it. 

James has been at a stage where, even in the Cry Room, he would cry through a huge portion of Mass. 

Was he getting anything from that, other than an aversion to going anywhere near the parish? Was it helping the other kids to experience Mass with a younger sibling screaming the entire time and two stressed out parents who were at wit's end after trying everything they could to calm him down?

And most of all, could I give Maggie the intensive attention that she needs during Mass to help her grow and learn and feed this blossoming interest and love of God, while dealing with an irate one year old who's throwing himself on the ground and trying to remove a heating vent from the wall? 

Quite simply, for us, the answer was no.

And so we find ourselves turning both to the Cry Room and the nursery, grateful that we have these options right now, when we so desperately need them.

These years have certainly been humbling. 

And so it is that I've come to appreciate the Cry Room immensely.  And the nursery.  And I look forward to going to Mass again, instead of feeling incredible stress in the days that lead up to Sunday, thinking about all the ways that things can go wrong. 

The focus has been shifted back towards the reason we come together for the celebration of the Mass, even if things are still rather hectic and don't look exactly the way I imagined them, back in the days when I knew so much more about being a parent than I know now.

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. 


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.


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. 


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. 


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.


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. 


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:


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!