Not Quite Spring

I love this video so much because Tessie kept turning around and it looks like she was trying to kiss Sadie, although she never actually reached her.

She loves it each day when Sadie gets home from school, and Sadie absolutely adores her baby sister and is always talking about how cute Tessie is.  They are so sweet together.

In other news... we're supposed to get snow this week.  Three to six inches.

The kids are definitely ready for spring to be here... and so am I.

Tessie's ADOS and Autism Test Results

I didn't expect instant results, but when we got to Tessie's autism test they already knew that the therapy center had set up an intake appointment for her on Friday and so they were ready to score her evaluation the moment it was finished...

 

Central Apnea Scare

Just when I start to relax and wonder if Tessie is outgrowing her central apneas, she has a night that let's us know that we can't let our guard down.

Sadie and Patch have Fun at Nani and Bopa's House

Patrick and Sadie had the best morning over at Nani and Bopa's.

Maybe by the time Patch is old enough to drive it will be a little less terrifying to think of what he'd be like behind the wheel of an actual car.

All About Paul

When you have kids dates, or even what you call dates, sometimes have to be creative.

Paul and I decided to declare out dentist appointments, which we discovered the night before happened to be at the same time at the same place, dates, because they involved two hours of uninterrupted conversation.

And he agreed to be interviewed on camera (a sort of ongoing joke between us since I started vlogging has been how he's pretty much silent whenever the camera is on and is then actually the louder/more extroverted of the two of us when it's off).

I laughed, a lot, especially on the drive home as I asked him questions and we chatted as we drove.

And when we stopped he said he didn't think I had enough footage and I laughed even more because I knew this was going to be a longer post even after I was finished with editing.

The end of our conversation, where the talk turned to Paul starting his own Youtube channel (Will it happen?  Was he serious?) was totally my favorite part.

So here it is, Paul talking about everything from work to books to life (and a quick tour of Ann Arbor before our dentist appointments):

James goes to a Neurology Appointment

He doesn't have as many appointments as he used to, but once and a while James still heads to neurology for a checkup.

Okay, to be totally honest I was really hoping that they were going to discharge him today and say to come back if we needed to. But I also knew, because of the new breathing things going on with his sleep, and some weird eye things, that might not happen.

So instead he ended up with two new doctors.

Not quite a win.  But he did have a lot of fun dancing his way around the office being silly.

So maybe a win anyways?

A Very Tessie Introduction

I made fun little introduction video/interviews with the boys (and there's one with Sadie that I shared here a couple weeks ago when she gave us a tour of her room), that I ultimately want to put on the "Who's Who page at the top of the blog, once I've made one for each member of the family.

The boys loves them and have watched their own a bunch of times.



Although James managed to pick out Patch's comment about "making a video without my brother" at the end of his video (I think even I missed it) and was fairly furious when he heard it.

He has to do everything with Patch at the moment.  Which, relatedly, is probably why Patrick was so thrilled to do a video that was all his own.

But then James and I made his own video when Patch was at school.


And finally it was time to make one for Tessie.  But I was having a harder time making hers because I couldn't interview her since she only really says "mama" and only "mama" occasionally.

Last night I started watching old videos of Tessie and by the time I went to bed I had come up with this little Tessie montage, which goes through some of my favorite moments from the last year, along with some descriptions that I think really describe our favorite, daring little bunny:



I don't know what it is but that llama dress that she is wearing is one of my all time favorite pieces of toddler clothing ever.  It's just so Tessie.

A Visit to Patrick's Ballet Class

Patrick is such a little performer and he waited for such a long time (not always patiently) to be able to take ballet at Sadie's dance school, asking me regularly if he was old enough to be in a class of his own yet.  Last year he was able to take a few sessions of the preschool dance clinics they offered, but wasn't old enough at the beginning of the year to start the beginner's class.

This year he's finally old enough to be in a ballet class and get ready to be part of the big recital.  And he is so excited.  Last night was Visitor's Night and I took advantage of my visit to make a little video that he could watch later (probably over and over again) and now I get to share it with you too!

The Sleep Study: An Update

I shared that initial sleep study post where James talked with me about his sleep study and so I wanted to share this here as well, complete with the clips that Paul was sending me before I told him I was totally okay with him not sending me any thing else.

Apparently my concerns that James is maybe slightly more stubborn than the average three year old are not entirely unfounded:

What I Wish I Had Known

This is something I am passionate about.

And there's an apology stuck in the middle to a blog reader that I went off on back in 2011, who probably isn't still reading because I was so, so very rude, but if she is... I really do appreciate what you said and I really am sorry I didn't listen.

Because I should have.  And I wish that I had, well, frequently if I'm honest.

And this video is totally dedicated to you.

A Sleep Study and A Prayer Request

I wasn't planning on posting twice in one day, but Paul and James are gone right now and the house seems very, very quiet.

James had a lot to say about his sleep study and was very excited about it, but Paul texted and let me know that (as we anticipated) our super sensitive sensory boy is having a tough time being hooked up to all those wires.

I told the doctor I could not imagine a reality in which a sleep study would be possible for James and he said that they had kids with autism successfully do it all the time, so we should give them a chance.  I think our little bouncing three year old might give them a run for their money in this case.  He is stubborn to say the least.

He was so excited to talk about it though, and make a video watching himself talk about it.

But my favorite moment is at 4:45 when we were walking up the stairs and he asked me to do something for him while he was gone.



My heart!

So if you have a moment please say a prayer for our little guy tonight so that they can get accurate results.

The kid can't tolerate wearing socks.  I just don't know how they're going to get him to sleep with all those sensors on him.

Maggie's Wonderful Day at Equine Therapy

We've had so much snow and so many holidays lately that "Horse Class" as Maggie has dubbed her weekly Equine Therapy sessions, have been far less than weekly.  Yesterday morning when she woke up the first thing that she asked me was whether or not she was going to get to go.

No matter how I tighten that helmet (and it was on tight) she somehow tilts it back...

She did and she had an awesome time.  Sadie has lessons at the same time and Sadie's been working on posting while trotting.  Maggie surprised, and thrilled, everyone there, by starting to post on her own midway through her lesson and spending the last ten minutes posting.

I wish I'd caught more of it on camera (I thought I had, but I think I was too busy cheering for her when she went past!).  But you definitely see her do it a few times towards the end of the video, although not as consistently as we saw, when she was doing it all the way around the arena.

We're so proud of our mermaid.  And she had so much fun.  Her feet were definitely cold from he puddle stomping before lessons by the time we got home, (we were more than a little early) but there was no stopping here.

She loves puddle stomping almost as much as she loves riding Jack.

 

Ash Wednesday and Valentine's Day

I knew how we would do this whole Ash Wednesday/Valentine's Day thing if we homeschooled and I knew how it was likely handled at the parish school our kids attended last year (if I had to guess I would guess that they had Valentine's day on Fat Tuesday), but as Valentine's Day approached I weighed how to help the kids understand the start of Lent with the parties they'd be having in their classrooms.

I had worked out that there was only one Mass at our parish we would be able to attend as a family and, while Ash Wednesday isn't a Holy Day of Obligation, I really wanted to make sure we all made it as a family, especially since the rest of the day was going to be busy.  So we made it to the 6:30 Mass, where James, upon receiving his ashes, turned around and said "Do you see this?  Do you see what I got here?!?!?" in his most excited voice as I ushered him back to our seats.

He was a tiny bit disappointed when he realized it didn't mean that he could make his first communion twenty minutes later.

Maggie's school made it pretty easy. Her teacher had let me know before hand that while they would exchange cards everything was going to be really low key and relaxed because the school has lots of kids from lots of different cultures that don't celebrate Valentine's Day.  And besides that Maggie's class keeps things a little more low key just so the kids don't get too thrown off their regular schedule (although I think it took weeks for everyone to recover from the excitement of Halloween).

And I did make a three minute vlog that zips through our day.  I had fun getting some little clips of the farms around the area that we live in, all covered in snow, and the houses covered in ice and even figured out how to add music, so I was kind of proud of this one.



Paul was able to visit Sadie's class, which I don't have video from, but which made her day.

And I think everyone has worked out what they're doing for Lent and had a good plan by yesterday and all the time spent in the car gave us quite a bit of time to talk and to watch a certain rosary based DVD that the kids have all loved since they were Jamesy's age.

Now for Day 2 of Lent.

Updates, Updates, Everywhere!

This post is going to be a little bit of this and a little bit of that.

First, the best Tessie mini update in the world.

Last night when I was getting her ready for bed, she grabbed my face and kissed me (well toddler kissed me, so basically smashed her mouth against my face, but still!) three times!

And now when I walk into a room she looks up and a lot of the time runs over.  Previously, I would have to walk over and pick her up and raise her up to face level before she would notice that I was even in the room with  her (and then she would get excited that I was there).

So both of those are huge!

Go Tessie!

Next I'd like to share something I'm sort of proud of.  I've lost thirty lbs.  I'm not to my goal yet, but I'm getting there and I'm pretty excited (and it's Fat Tuesday and I'm totally about to go downstairs and break open a box of paczkis).

I made a vlog where I talk about the ups and downs and about the stress eating that I really, really indulged in last spring when we were getting all kinds of tough news and having all kinds of tough appointments with Tess.



For anyone interested in trying Healthy Wage, this is my referral link (and my standard referral link disclaimer: yes if you click and decide that Healthy Wage is something that can help you lose weight and sign up, I receive a small commission, so if you do sign up through my link, thank you!).

Which brings me to this post which I share every single year.

This year, will be the very first Lent in ten years when I haven't been pregnant or nursing.

And it might sound silly but I'm kind of excited to be able to not have those exemptions that I've had for the past decade.

Now let's talk about this idea of fasting while pregnant and nursing.

Every year I see the question come up on the Catholic Internets and every year I see some people encouraging it.  I've been there.  I've tried it.  I've had a screaming baby who had no milk to drink who was very, very unhappy.  If you are pregnant are nursing there is an exemption from fasting.

There is a reason for those exemptions.  Please, please take advantage of them and fast in a non-dietary calorie restrictive way, so you can continue to nurture your little one.

You can fast from television, or the internet, or electronics altogether.  Think of something else that you set aside and fast from that instead of food.

I know it can be hard, especially if you struggle with scrupulosity, but nursing and fasting (and pregnancy and fasting) really just don't mix.

Getting down off my soap box and moving on.

The kids and I have been having fun in the snow and  have been having fun making (and watching vlogs) and learning about video editing.

Patch may walk around the house wearing a watch and talking into it and pretending to make his own "vlogs" and he may have made his brother cry at least twice by telling him "you can't be in this video Jamesy"... so we're working on that.

On a different note:

I'm not sure anyone in all of Michigan loves the snow like Tessie now that she has discovered it:



On this day, when the kids headed outside, she flung herself at the door and burst into tears because she thought that she was being left behind.  All winter she was content to play inside and never asked to go out, but now she knows what she's missing.



And here she was pretty content to let everyone else shovel while she sat and watched and enjoyed the snowflakes drifting down.



And here's the part that we're really, really excited about.

We are going to have new neighbors soon.

Alright, not quite neighbors.  But almost neighbors.

 

Nani and Bopa are moving to Michigan and we are ridiculously excited.

And that is the latest.

It's been busy and snowy here as we enjoy this last day of Ordinary Time and prepare for Lent!

The First Round: An Update

We survived yesterday and it was a good day.  Long and exhausting, but good.

After the intake session I had a meeting at Maggie's therapy center and Tessie was with me and got to go and bounce around (she has not one but three therapists requesting to work with her as little Miss Popularity), and even played in the playroom for a little while with Maggie before we headed home to make dinner.  

I don't think I realized how nervous I was (I mean I knew that I was nervous, obviously) until I was editing the twenty seconds of video I shot in the car before going in to the appointment to make this vlog.  

I was this nervous.

Because the update was so simple (Basically yes, we made it!  Next step!  We'll know more soon.  The box has been checked off!), I answered one of the most common questions I've heard over the years that people have, only this time focusing on what we noticed was different about Tess that caused us to seek out testing, first when she was only 1-3 months old, for early intervention, and then as she's gotten bigger.

She couldn't be diagnosed until she was 18 months old, but there were definitely signs that we were seeing, much, much earlier (because I knew what to look for) and I've written about that here but I wanted to talk about it a bit more because knowing what to look for was something that I remember looking for five years ago when I first began to have questions about Maggie's development and whether it was normal.

And that's the update for today.  Now I'll be counting down to February 26th!

A Little Bit of Everything

Today is the day of Tessie's intake evaluation and I spent yesterday afternoon pouring over hundreds of pieces of paperwork trying to decide which ones would be the best to take with me, which best painted the picture of the last eighteen months of development.

I don't think they were quite expecting this when they said to "bring any paper work pertaining to her development if you have any" during the phone call.

In other situations I would have taken the entire file, because there are times when having every detail is helpful, but today is not that day.  I don't want to overwhelm what is important.

Thankfully she has developmental evaluations and reports since she was three months old, and I also pulled out all the big tests and reports, although the biggest, the first genetic testing report (which doesn't have any genetic testing in it, because at that point they wanted to hold of on more neurological testing, but which had tons of developmental information and basically had all of her medical information in a very nice very long report) is missing somewhere and I cannot for the life of me find it.

Below is the video I let the kids make (I'm not sure I mentioned if I mentioned before the boys somehow discovering unboxing videos on Amazon Prime and thinking they were the best things ever?), but it is here, not because it's an unboxing video but because if if you press play it goes to the last 10 seconds automatically, which show Tessie looking at me for the longest amount of time that she has ever looked at me, in her entire life, and blowing a kiss, and I've watched it, over and over again, and will probably go on watching it, for a very long time.

And I wanted to share it with you here too, because it's just about the best thing ever (and has nothing to do with the rest of the video, which is Sadie using the weirdest sewing machine I've ever seen).




On a totally different note:

Last night was... well... fun until the last two minutes.

But all of the kids had fallen asleep by that point anyways (Sadie made it the longest, Patch the second longest, both were out cold around the fourth quarter).

I think that videos with Paul are the most fun, especially sports videos.

When I filmed that last part I was really, really waiting for the come back.

There were a couple touchdowns and calls I am pretty sure I am going to be hearing about for the rest of my life.

 

Now to explain to a certain mermaid why she isn't going to school today (snow day 532 this year... every one equally upsetting when you love going to school and changes in routine are hard).

In somewhat amusing news, my suspicions that she is holding out on us with her reading skills continues to grow.

Throughout Maggie's life, now and then, there have been times when Paul and I have thought that she might be capable of reading more than we can demonstrate.  It isn't totally unusual for small kids with autism to be able to read, but I also know that most of my friends with kids who had hyperlexia seem to know that there kids could read.

With Mags, there were suspicions, but we have mostly thought that she cannot read more than a few words. She'd look at books but the pictures always seemed to be the main draw.  If books don't have pictures she isn't looking at them.  And they've been working on reading with her at school for years with a mixture of results.

Yesterday she walked by me carrying a small scrap of paper that caught my eye. I stopped her and she handed it over.

It had been torn from her teacher/parent daily notebook that goes back and forth (and that she had, until yesterday never torn).  The small portion she had torn out said that she had tried eloping from the classroom twice, for the first time all week.

She smiled at me as she handed it over and then took it back when I was done reading it.

I went downstairs and found the notebook in her bag.  The rest of it was in one piece.  Only that little message had been torn out.

I have to say.  I think the mermaid might be holding out on her reading lessons.  Or she just knows that her teacher would be sending home a note.

Either way, it was pretty smart and pretty sneaky and not a bit surprising.

Sisters

Tessie had a rough day yesterday.

She has a fever and some sort of a respiratory thing, that would be a lot more scary if she wasn't on her monitor whenever she's asleep, so that I can see that her numbers have been beautiful, even when she's stuffy and coughing.

But the stuffiness has made for one sad little baby.  

She climbed her way sadly around the house on Tuesday (even sickness doesn't discourage her love of climbing), but no one could cheer her up until the school bus arrived.  

And then Sadie walked through the door.

She wasn't instantly happy.

But it was pretty close:

Her big sister had missed her too.

And that smile made Sadie's day too

And my day.  Their smiles totally made my day too.

Tessie Testing Update

Today was quite the day and quite a few prayers were answered as things began to fall into place, in the most perfect order I could have possibly imagined.

This was a huge relief:



Now if she would just kick this fever/respiratory thing she has going on, that would be wonderful!

Maggie and Tessie and the Things I am Learning

I've begun to think that Maggie has decided to take Tessie on as her protege.

I'm not sure if it began before or after we told Maggie that Tessie had autism, but I can tell you that when we told her that Tessie is also on the spectrum, and that someday soon(ish) Tessie would be going to the therapy center with her, Maggie's face lit up and she beamed at me, with the hugest smile.  She was pretty excited about the idea of Tessie being at "Mermaid School" alongside her someday.

After that I began to notice that Maggie, who's always loved the babies, was now especially interested in Tessie and had begun to walk around the house singing to herself "Baby Tessie, Baby Tessie, Baby Tessie."

On Wednesday Maggie was home sick from school, and really got to see Tessie in action and it was somewhat hilarious to watch her reactions to Tessie's antics.

If you've been reading this blog long, you may remember when Maggie was Tessie's age, and basically developed into a mini force of nature, climbing every surface she encountered and testing every limitation and just about driving me insane trying to keep her safely in one piece and unharmed.

Maggie, when she was a little younger than Tess.  And much blonder than she is now.

This week Tessie appears to have quite suddenly reached that same point of development.

Both Tessie and Maggie have extremely good gross and rather good fine motor skills when they're toddlers.

My first clue that Tessie had reached the Adventure Stage was when James began walking around the house muttering "that baby is a trouble maker." 

He meant, that she had begun to scale every surface and was always reaching up and up and up for another hand hold, which I had also taken notice of.

Maggie at the beginning of her action/adventure stage.  Which is ongoing.

When Tessie was a newborn and we were in the hospital and she kept fussing and turning away from me and was unable to settle as long as I was holding her, I would cuddle her quickly and kiss her head and put her down and she would sigh and fall immediately asleep and I remember that I kept thinking to myself "this is as easy as it is going to be for a very long time" (although it was not all that easy at all, knowing the challenges that she would face and feeling rather helpless with that knowing and also knowing that it would be a while before anyone would believe me because you can't know that early, that's insane) and this stage right now is exactly the stage that I was thinking about being rather difficult.

Which is almost silly because I know that there are many ways for life to be difficult but I think it because this was the time before we had answers with Maggie and so this was the time that stands out in my mind as so baffling and confusing and intense.

But I didn't realize that that lack of answers, is exactly what the biggest part of the problem was, when Maggie was this age. We hadn't known.  With Tessie, we do.

And that makes all the difference in the world.

This time around it has been easier because we've been here before.  I've already been Maggie's mom and while Tessie isn't Maggie, two year old Maggie (and years of training and reading and learnin and sitting in therapy sessions) gave me some serious parenting skills that I did not have when I was still in my twenties and had no idea what was happening and didn't understand why I felt like I was the parent of a small force of nature rather than an almost two year old girl.

I've heard so many people, over the years, talk about how much they hate labels, and wish they could go away.  You won't hear that from me.  Because sometimes getting that diagnosis can mean answers.  And it can mean help.  And it can mean knowing you aren't losing your mind.

It can mean knowing how to help your child flourish and blossom.  And it can mean learning how to communicate with them, even if it doesn't look exactly like how everyone else communicates.

Now, back to Maggie and Tessie's adventures this week, and this is one of my favorite things, maybe in my whole life.

When Maggie was home sick, Tessie went on her way, tearing about the house.  At first Maggie helped her.  She opened the baby gate for her, and that's how we discovered that Tessie has totally mastered the stairs, which we'd been practicing for a couple months in therapy.

Well that's nice, I thought.  She's finally gotten that she has to turn around to go down backwards.  Let's take the stair gates down. I uninstalled the first one, since the second was too tight for me to loosen, and Tessie spent an hour and a half skittering up and down the stairs to the playroom, giggling.

When she was done with that she went back to trying to use the high chair as a ladder, and trying to gain access to any other high surface she could scale.

Maggie, I think, perhaps also saw that this wasn't the best idea.

Over the course of the rest of the day I would hear a bang, usually near where Maggie had been when I'd turned my back, and because it had been where she'd been standing I'd say "Maggie, what is..." and trail off as I turned around and see her standing, looking at Tessie, who had gotten into some new sort of trouble, with the same look that the rest of us have generally had as Maggie has concocted new ways to get into things she shouldn't have access to for the past seven years of her life.

And she would give me a look like she could not believe what Tessie was doing and I'd say "I know.  What can you do?  She's a baby." but all in all, with the exception of opening the baby gate to let Tessie come downstairs with her to play, Maggie had a remarkably unmischievous day.

I think because she was watching Tessie in disbelief that one small person could make so much trouble.

Exhausted from trouble making.

Yesterday we took down the second baby gate, that one that cut off going upstairs (and more importantly tumbling down, which had been the concern) and left the door to my bedroom open to see what Tessie would do with totally unrestricted access (which is unlikely to happen again for quite a while because of her a) climbing skills and b) the bookshelves in our room).

This is what happened next.

She raced up the stairs, climbed up on the bed, tumbled across it, got to the book shelf, threw herself at it, slipped down between the bed and bookshelf as I reached for her and grabbed her by the back of her dress (I'd been watching to make sure she didn't get into too much trouble), pulled herself up, and grabbed a bottle of iron pills.  Then she threw herself backwards onto a pillow, and while I waited ready to grab them (but testing my theory) she took less than sixty seconds to remove the child proof lid (theory proved, I had it out of her hand immediately).

She didn't cry.  She was pretty sure she shouldn't have had it and was probably surprised I hadn't grabbed it earlier.

Thanks to Mags, the only rooms not super child proofed in our house now are the master bedroom, the kitchen, and the laundry room, so now that the stair gates are down she has pretty free access to the house and I just have to make sure the climbing built in surfaces doesn't get too out of control.

If she continues to follow in Maggie's footsteps... it most definitely will.  But we're ready for it.

And Maggie is here as an awesome big sister to help us along the way, having already given us some pretty good tips for raising a baby mermaid.

I'm going to throw this in at the end because I love Sadie's expression where she talks about how she loves babies and is pretty good with them, then turns around and sees Tessie climbing on the bed behind her getting into stuff.  We watched it last night and couldn't stop laughing because of her face as she turns back around.

Sunday Afternoon Fun

This might be my favorite Youtube video so far.  Paul and the kids haven't gotten a chance to watch it yet because it finished processing at eleven o'clock last night (I had fallen asleep an hour earlier and woke up and saw that it was uploaded and complete) and I typed a few words with half closed eyes and hit publish, because I was hoping to get it posted on the same night as the game.

I think what I love about it is that it offers a little glimpse into everyones personalities (well Paul's personality when a game is on), and it offers an eleven minute look at the energy level in our house on any given Sunday.

The highlights included Tess spinning around like a top, Patch doing a million summersaults (I didn't even get them all on video), and none of the kids being able to remember for more than two seconds who Daddy was cheering for.



For anyone who's interested, I won't be posting all of our videos here or on the blog Facebook page, just a few of my absolute favorites (I know I've been enthusiastically posting the last few days as I've got things started and it's all been so new, but now I'm giving the page it's own twitter (@coffeendcupcake) and it's own Instagram (@CoffeeandCupcakesFamily), and so now I am also giving Coffee and Cupcakes it's own Facebook page so that it wouldn't be annoying to anyone who wanted to follow the blog who wasn't interested in quite as many videos.

Now maybe I can get the kids to remember the name of Daddy's team before Superbowl Sunday...

Another Sleep Study (for Someone Other Than Tessie)

Yesterday I loaded a reluctant James into Paul's car and we headed north.

Within moments he was soundly asleep.  

He was going to see the pulmonologist at the office that Tessie goes to at the clinic at the Children's hospital a little over an hour north.  

I sighed as I thought about the process of getting Tessie an appointment there.  It had taken me months to be believed and get that first sleep study and then over a month to get the referral there, for a second opinion.

With James (I'm certain because of Tessie) things went quite differently.  It only took two conversations.

First I had told his neurologist what I was seeing (because I was fairly certain it was a "brain thing" because of Tess) and he told me to tell his primary doctor.  

So, reluctantly, I brought it up under "concerns" at his well child visit:

"I really don't want to tell you this," I began, "because I can't imagine him tolerating a sleep study."  

He had barely tolerated being weighed and measured. "But he gets up in the early morning and sneaks out of his bed and climbs up into our bed.  It's a king sized bed and a lot of the time I won't even notice that he's there."  

"And about four times now I've woken up and found him asleep, with nothing touching him, nothing over his face, on his back, not breathing.  And because of Tessie I knew to put my hand on his chest and I counted and I waited. I have seen him not breath for over twenty second before I shook him and he gasped.  So I know that he has at least four apneas that I had witnessed in which he was totally silent making no effort to breath.  And if I have seen it happen four times... well.... I don't want to think about how often it must be happening when I'm not watching."

Because, without the alarm I would have witnessed maybe four of Tessie's apneas over a year.  So four in a month... makes me uneasy.

His doctor felt strongly that he needed to be referred to the same doctor Tessie sees.  And this probably was another reinforcing piece in the puzzle of the likelihood of an underlying genetic cause... there are now a lot of questions about how Maggie slept as a baby (like a rock), and whether I suspected apnea with her (not at the time, but in hindsight... I believe it is incredibly likely... now I have no idea because when she goes to bed she tells me good night and says "Out please.  Door closed." if I linger.).  

If James does have central apnea, I guess we'll have to consider the possibility that he might not be the only kid that has it (I guess that would also offer fairly concrete proof of some sort of genetic abnormality that's causing the apneas, because central apnea without an apparent cause is incredibly rare, which is what her doctor seems increasingly to lean towards anyways) , but I'm going to try not to cross that bridge in my head before we get to it.  

James was so dramatic about the exam (being weighed, measured, having his eyes, nose, and throat checked, and breathing listened to, so nothing particularly extensive) that he managed to escape the office, clutching the a new toy motorcycle, car, and two stickers.  When we arrived home I think Patrick started to wish he'd gotten sent to the pulmonologist.

I will admit that I am planning this sleep study as a very special "Daddy-James" slumber party at the hospital.  Both because I hope that James will do better with his Dad there... and because after a half dozen sleep studies with Tess I'm a little burnt out.  

Just... Be Kind... Kinder.

Yesterday was odd and at the end filled with an odd sort of internet drama that I'm almost reluctant to write about.

But I'm going to because I keep coming back to it and to a point that I don't want to forget.

I was tired yesterday.  

I'd woken up early for no particular reason and I couldn't sleep because my thoughts were going and wouldn't be stopped and so, because it was five, I got up and got dressed and started the day, my mind on Tessie.

Facebook reminded me of where we had been a year to the day earlier, and so that was on my mind too.

I thought about that day, driving to the hospital and sitting with the doctors who hadn't told me that they'd planned on doing a tracheotomy the moment we walked through the doors (they didn't), as they went over our entire family history, searching for clues and answers and finding very little to go on.

It seemed appropriate that I had just finished editing a video talking about Tessie's story, the words spilling out with surprising ease and so I put a few finishing touches on it and shared the finished product before going on with my day.

I got the kids up and ready, and onto their respective buses, then went about the house, doing laundry, cleaning, and wishing that it wasn't quite so cold.

And I worried.  It's been a worrisome sort of week.

I got a call this week from a social worker who got a call from Maggie's therapist.  They're considering accepting the results from Harvard.  And if they don't take them they're considering bumping Tessie up the list.

If they do either of these things it will be nothing short of a miracle.  These things don't happen.  They just don't.

And I'm almost afraid to believe or even to hope, that they're really and truly a possibility, because I don't want to be crushed if nothing happens and we have to wait eight months for her appointment.  Eight months, developmentally, when you're slipping behind more and more, is a very long time.

When the school bus arrived I sighed.

I didn't want to load the little kids up in the car.  I was so tired.  And a certain not entirely reliably potty trained child was insisting that he didn't need training pants, so I felt like disaster was looming as we trudged out into the icy cold, and loaded up the van.

And then we got to gymnastics.

This summer we discovered the gym that three of our five kids go to. We came upon it by chance when Maggie had an appointment with a specialist that wouldn't allow other children in the exam room.  I called, unsuccessfully, all over town.  Then I found them.

The gymnastics gym had a summer camp that would allow one day drop ins, at the last minute, and they saved the day.  And the kids had a blast.

Fast foward to the school year.  I have two kids who have pretty poor gross motor skills.  Like the sort of gross motor skills that get you into physical therapy.

We aren't going to gymnastics because I'm hoping to raise little Olympians.  We're at gymnastics because I have one kid who was in the 2nd percentile for gross motor skills three years ago, who walks across the room and falls over for no particular reason other than the fact that she's inherited her two left feet from her father and I, and a three year old who has officially graduated from PT, but who seems destined to follow in his big sisters footsteps.

Patrick has somehow managed to escape the clumsy gene and has hoarded all of the coordination that Maggie didn't get, for himself (he accidentally landed a front handspring the other day without meaning to), so he's just along for the ride.

With two minutes left until class started I shuffled three tiny kids into the bathroom, where the potty training rebel proclaimed the potty "yucky" (it wasn't) and refused to try and go, and then began to shout "It's yucky! No! No! Yucky! Yucky!" at the top of his small, loud lungs.

So we embarrassingly shuffled back into the gym, where everyone turned to look at the source of the commotion, and the boys sprinted to their class, while I said a small prayer for dryness (it was answered).

Then Sadie waved.  Her class was starting late.  "Can you take a video of me?" she asked, suddenly shy at the idea.

She pranced back and forth on one of the low balance beams, slowly, carefully.

When she'd first begun, at the end of summer, she had fallen off the taller beam that they use during class over and over and over again. And she'd had to learn to get back up.  That had taken weeks of the beam portion of the class.

And so I watched her, proudly, both before class, and then during her class as she slowly made her way back forth.  She wasn't doing anything fancy.  Her feet didn't leave the beam together.  But sometimes she stood very still, with a look of utmost concentration, and one foot would come up, or she'd lean to touch the bar with her hands, or she'd walk backwards, and these were all things that were impossible three or six months ago when she could hardly stay on the thing.

So I posted a picture on Instagram, mostly so that her grandparents could see the picture.  That is pretty much why I post 99% of my photos.

I knew that my mom would see and would remember the class that she attended in fall and would know how hard Sadie had worked for this small, sweet moment.

Paul came by after work, and took over supervising the little kids when they were done with their class, and I ran to do grocery shopping, and met the entire group at home, pulling into the driveway five minutes before them.

After all the food was put away, and dinner was cooked and the kids were fed, and tucked into bed I saw an Instagram alert.  There was a comment.

And that was when I saw that someone had scolded me for posted a photo of gymnastics "today."

Of course I knew what he meant, although I hadn't for a moment thought of it when I posted the photo, and for a split second I wanted to say that here it almost feels like everyday has been "today" for a while now.  And I imagine that it will be "today" for quite a while longer.

We don't have cable.  I don't know what the national news coverage has been like.  I can guess.

But I have watched the story unfold on local online news sites and I've waited for an evil man to face the punishment that he deserves to face here on earth.

And it has been heartbreaking to watch, and realize that one of the boys' favorite people in the world was one of the brave young women standing up, a brave survivor.

And it didn't for a single moment occur to me that someone would take me posting a picture of the kids at gymnastics, which I basically do every Wednesday while I'm sitting there bored for an hour and a half, and twist it into something sick and evil.

Mostly because it was one of a thousand things that was on my mind, and it wasn't near the surface, amid many more pressing concerns and worries.  But also because it wasn't anything sick or evil.

I stopped.  I thought about defending my motivation for the post, about trying to explain that I was just posting a picture of my daughter so her grandmother could see.  I thought about explaining that I've been praying for the survivors, especially those we know who've been personally effected.  And I briefly thought about using stronger language and telling the person to mind their own business because I hadn't had any ill intent at all, and the picture in no way supported the people or organizations that had dropped the ball and screwed up.

In the end I didn't do any of those things.  I blocked the user and deleted his comment.  He had never interacted with me in any way in the past.  If I'd recognized his name, if he'd ever said a kind or respectful word, I would have responded.  But he hadn't.

Once upon a time I tried harder to please everyone.  But those days are long gone.  And if your first comment is an arrogant scolding, or if you appear to be a troll, I'm probably not going to waste my time hitting publish or even reading the entire comment.  There just aren't enough hours in the day anymore and I don't have the energy to pretend.

Which brings me to the whole point of this post.

Yesterday someone who follows me was scrolling through my Instagram feed and they saw a photo and made the conscious choice to think the worst of me.  And then they decided that I needed to be scolded (I briefly considered replying "Next time please email your concerns over my behavior to my husband as he is the one to rightfully scold me in this situation" but I feared that the sarcasm would be missed... sigh.).

Maybe, just maybe, we should be a little gentler with each other.  Maybe we can think, hey, everyone is going through something.  Everyone.  This world, it's not an easy place.  This year, it hasn't been an easy year.  For anyone.

Instead of coming out swinging, when that's your impulse, be kind.  Say something nice.  Don't drag the other person down.  Even if makes your feel bigger.  More important.

Because maybe they're a small time blogger who's just posting a picture for their mom to see.  Maybe they spent the weekend driving to Boston for their baby to be diagnosed with autism, and they're potty training another kid, and they slipped and slid in the snow and they're so excited that their daughter can walk across that stupid balance beam and don't ruin it jackass.

Don't ruin it.

Oh yeah, you can't.

But don't even try.  Please?

Because we really shouldn't make life harder for each other, even if we can.  Right?

Disclaimer:  Yes I know.  I could have ignored this little internet obnoxiousness.  I very nearly did. But I've seen so much of it lately.  Maybe it's winter and the cold.  But too often in the land of the interwebs it feels like there are people looking to take things the wrong way.  And that's why I wanted to take this opportunity to use this example to say this.  Give people the benefit of the doubt.  Just... be kind.

Our Very First Vlog

The kids have been watching a couple family Youtube channels and this morning I let them convince me to make a channel of their own.

After watching a few videos on video editing I told them that if they picked up the downstairs (where they'd spent the morning playing) I'd film them playing and this is what happened next.

I threw on an introduction and added some clip art and we now have our very first Vlog.

Sadie was incredibly excited when we watched it before she went to bed and asked if we could make the second one tomorrow.

I told her I didn't think that was super realistic, so her new goal is to get one made by Saturday...

That's a little more realistic.

I guess we'll see.

Here is the latest.

They had a lot of fun making.

Actually we all did.

Answers and Autism

We made it to Boston and I nervously bundled Tessie into the car, relieved that Maggie had been calm all morning long so Paul would be able to make the drive with us into the city.  

He was totally calm.  I was a bundle of nerves.

"We know what they're going to say, right?  This isn't a surprise.  We've known for a long time.  This isn't news." was his calming advice all the way there, as I chattered about being nervous, jittery and impatient now that we were so close to officially being told what I'd suspected for a very long time.  

We arrived an hour early and grabbed lunch at the bagel place near the Cognitive Neuroscience Lab and then it was time.

Tessie was not a fan of the EEG cap this time around (she is not a fan of hats in general) but after being bribed with a slew of animal cookies, bubbles, and the Curious George movie on TV she relented and sat still.

She relaxed and watched three of the videos they wanted her to watch with the cap on, to see what her little brain does when she sees people saying simple words she should understand and what her brain does when she sees people making random sounds, and then it was time for her autism testing.

After that we went into another room, across the hall.

First they did an ADOS.

The ADOS is basically done where the test administrator plays with the child, or in Tessie's case attempts to play with the child.  Tessie used her rather considerable willpower to ignore Ms. L, and wander around the room, testing out the baby gate that led to the hallway, and refusing to give the baby doll a bath, make the frog jump, or look cast a glance at the board book.

When the tests were done we sat and went over the results.

Tessie qualifies as having autism according to the test results, although the study doesn't offer official diagnoses.

We'll receive the test results in a few days in the mail, on the official university letter head, to give to her doctors.

The results will look kind of serious and scary at this point (or so we've been warned), but that's in part because of her lack of interest in the test giver, one of the difficulties in administering these tests to tiny kids on the spectrum, and they told us to remember that Tessie is a happy, easy going baby who does communicate in her own way quite well, even if it is without words.

We talked a bit about Maggie's results, when she was three, on the same test, and how I'd remembered opening a the packet and seeing her scores in the lowest .5% "of kids on the spectrum" and being afraid of what that meant for her future and now she's doing things that I couldn't have imagined back in 2013.  "I imagine it's not unlike that." I said, watching Tessie throw blocks around the room.

The girls have similar verbal skills (looking back to one year old Maggie) and neither one was particularly interested in playing with the toys in a neurotypical way.

So that's where we are now.

We're eight months away from her appointment for autism testing in Michigan.

We're praying that there are enough cancelations that she can get in sooner, because until she gets seen for that test she will get one hour of week of therapy and that's it.  Which, knowing how important early intervention is, is killing me.

Even with all the trainings I've done, and everything I've learned with Maggie, I'm not even close to be on par (success wise) with the therapy Maggie receives and doing what we do at home her delay has grown from 20% to 40%... it makes me feel physically ill to think of what it will be on August 8th.

The lab strongly recommended we come back for testing at the Developmental Center at Boston Children's.  Paul's going to call our insurance company as soon as the weekend is over the try and get it approved.  I am not optimistic.

Our last conversations with them have involved them denying Mags' seizure/migraine med last week suddenly (apparently, after years, they suddenly objected to the sweetener in the compound... sigh...), which was ultimately approved, and the denial of Tessie's genetic testing to determined whether or not she needed a tracheostomy and a ventilator when they were still afraid she had CCHS, which they continued to deny testing for (and which the genetic testing company ultimately covered).  So. My faith in them is very small.

I'm going to be making some phone calls and trying to determine how much of a difference going will make, and I'm going to be trying to get a feel for the length of the cancelation list at the moment, and I'm trying to see if they'd allow us to travel inside Michigan for testing at another location (pretty sure the answer is no, but I might as well ask... because if traveling to the UP meant shaving off months I would be in the car like that).

If the insurance says no to the developmental testing the lab recommends I'm not really sure what we'll do.  I guess we're taking it one day at a time right now.

For the moment the most important thing is that our tiny whirlwind princess is happy, and healthy and communicates remarkably well with us and all four of her older brothers and sisters who are only too happy to answer her babbles and rough house with her and keep her out of the trouble that, like a certain older sister, she tends to get into.

Who turned out the lights?

And that is the latest.

At least this time we have an idea that the road ahead isn't nearly as scary as we thought the last time we were here.  It's just different.  Challenging, certainly (but everyone has challenges).  I just wish I could get those tests through now.

The waiting is the hardest part.

From the Plane to the Van: A Change of Plans

I've been too nervous to write, or email, or even text.

I've been pacing and cleaning, but not packing, not yet.

Tessie and I were supposed to leave tonight, flying on Jet Blue from Detroit to Boston.

The weather, at least from what I'd seen all week, looked mild.  We don't have cable but every time I checked I would see "flurries in the a.m."  That looked non-threatening enough.

Still, even as the snow melted yesterday and a balmy breeze blew through the yard I was uneasy.

As I drifted off to sleep last night I laid out the day in my head.

Get Sadie to school.  Patch doesn't have pre-school on Fridays, so he would be home with Tessie and James and me.  Put away the last load of laundry that was still in the dryer and pack.  Scrub down the spare car seat and adjust the straps to fit Tessie. Pack a bag. Clean up any messes the boys had made in the mean time, and meet with Tessie's early interventionist for the last time, to be introduced to the special education teacher that would now be taking over her case.

Sadie would get home.  Paul would come home from work early. And I would install the carseat in his car and off we'd got to the airport for our seven p.m. flight.

I noticed how tired I felt at seven last night, as I was helping get the boys ready for bed, and didn't relish the idea of wrestling my twenty five pound lap baby for an hour and forty five minutes while I felt like dropping off to sleep.

At 5:45 my alarm sounded and for the first time in months I hit sleep, thinking that Sadie is always ready fifteen minutes before the bus arrives anyways, and that she could sleep in a few minutes too.
Before five minutes passed, my phone rang.

It was Maggie's school with a robo call, canceling the school day for "anticipated weather conditions."

I rolled onto my stomach and hit the email icon on my phone as Paul said "I got a text that the flight is canceled."

The next half hour was a blur.  Sadie's school called next, and then a text came from Maggie's therapy center and Tessie's therapist canceling their sessions as well.  Our entire days had been effectively cleared.

JetBlue had rebooked me on a flight the next day at 6am, which technically should get me to my appointment but I had played that game before.  Our first flight had been the afternoon before the appointment.  It had been cancelled.  They had then promised to get us on a flight the next day.

That had also been cancelled.

I didn't feel confident taking another flight that would make us vulnerable to the whim of the airline.

Which is what this felt like... I understood being grounded for the blizzard in Boston last week...  but it was harder to accept being grounded for a snowstorm that was dumping a few inches of snow and that would be out of Michigan hours before my flight was set to take off.

I'm sure there's more to the decision to cancel the flight, and that obviously I'm not privy to the decision making process, but at 6 am I knew that I wanted the decision of whether we were going to Boston or staying to be out of JetBlue's hands.

After checking the weather online and out the window we agreed to give driving a try.

I became a packing whirlwind.  I threw together a bag for Paul, Tessie and I, and then grabbed backpacks and packed four backpacks for the four big kids, each one full of everything they would need for a weekend away from home.

At the end of an hour of getting kids dressed and packing I woke up Tessie, got her a quick breakfast and everyone piled into the car.

It had started to snow.  There was maybe an inch of powdery white stuff turning Michigan back into a wintery wonderland.

It did take a little bit longer than normal to get down to Ohio, which was especially disappointing to Sadie who asked "are we in Ohio yet" approximately fifteen minutes after we pulled out of our driveway.

The storm was moving along with us, but by the time we got midway through Ohio we'd outrun the snow and now, nine hours into our adventure, we are halfway across New York, and we should make it to our destination just past Boston a little after ten.

"Are we there yet?" is our family motto.

Unfortunately so far the answer is a resounding no.

The entertainment of the moment is spending the afternoon on hold with JetBlue as I write (so far this entire) post.  Last time after the cancellation the first person we spoke to attempted to charge us to reschedule the second cancelled (by JetBlue) flight.

I'm not sure what is going to happen, or what I even want to happen, when they pick up the phone this time.  Because I really don't want their tickets... anywhere.  

If I ever get to talk to I guess we'll see.

Here is a glimpse of our day:

Update: JetBlue refunded the tickets!  So at least that is done with!

One More Update Before Sleep

Paul is the hero of the day.

He sat on hold for four hours this morning.

After the first two hours jetBlue picked up and he told them the situation, that our first plane had been grounded and we'd been moved to a second plane that had also been grounded and that now we'd missed our appointment in Boston.  

We had good news though.  We'd managed to get an appointment on the 13th.  Could they help us get a ticket so that I could get there with Tessie.

We'd be on our own now, he'd be staying home with the big kids, but at least she'd be seen and we wouldn't be waiting until summer for that ADOS.  

There was going to be an up charge for that, the woman on the phone after two hours said.  The thirteenth put us outside the travel window where moving our tickets would be complementary.

He asked to speak to a supervisor and while he waited he was cut off and the phone went back to a dial tone again.  

After four stressful hours on hold it was straightened out, without the additional fee and, barring any disaster, we're hoping to be there next week. 

I'm a little more nervous after everything that's gone wrong up until this point though.  

If there could not be any blizzards next weekend that would be really, really great.

A Change of Plans

The last twenty four hours have been tough. 

We were supposed to fly to Boston early this morning for the study that Tessie's part of, which includes, autism testing there.  It's her 18 month visit.

Last night that flight was canceled.

Paul got on the phone and managed to get us moved over to two seats on a flight early Friday morning. And then we waited.

We got an email asking us to check in this afternoon and when I clicked to confirm it, the confirmation wouldn't go through.  Paul called to make sure that everything was fine and he was assured that it was.  

I had just finished repacking our bags, and was about to move Tessie's car seat over to Paul's car so that we could leave at 3 am, when my phone dinged.  

I glanced down and saw the words "flight canceled" flash across the screen not ten seconds after Paul told me that the woman at JetBlue had assured him that all was well.  

But apparently word must not have come down to her yet, that basically all the Friday flights were going to be cancelled too and we were out of luck.  

We're not really sure what is going to happen now.  Because I really want to find a way to get there.  I really would like to know how Tessie would do on an ADOS and Mullin now, instead of in ages, in August.

Nani and Bopa were here from California staying with the other kids while we flew with Tessie to Boston Children's and it is highly unlikely I'm going to figure out an alternate plan before they return home in a few days so... today was tough.  

The number of tears that followed that text were not insignificant.  I did not take that news super well.  This trip was kind of a big deal. And not going was/is... a big deal.

Out of all the days that I randomly picked a couple of months ago I had to pick the blizzard "bomb cyclone" week to schedule her appointment.   

There is so much coming up in the next few weeks, but I'm hoping we can figure out something quick out, even if it's just me and Super Tess. 

The Moon and Taking Off Her Backpack

Maggie has found a new passion.  

For the first time in years she's found an interest that rivals mermaids.

I first posted about it on Facebook when I told this little story:

"The other day Maggie was strolling by and said “Sun. Moon. Planet.” And then pointed out the moon outside the window.

Now she primarily speaks in scripts (when she's at home), the same ones over and over again and usually lists of nouns. Rarely anything new. This was new. 

So I said “Comet. Meteor.” Just to throw something else out there and she turned around around and gave me a huge grin. 

Today I was sitting in the same chair and Maggie strolled over and said “Moon. Sky. Satellite.” before continuing on her way across the living room. 

Did we just have a conversation that wasn’t about mermaids?"

A Mermaid. By Maggie.

For the past few days she's kept bringing up the planets and has been extremely excited every time the moon has passed by one of the windows in the house. 

When I described her new interest to Paul I said "You know those old videos of teen girls seeing the Beetles? Like that.  But with the moon.  Outside our house."

I finally put on a show about the planets on Netflix and sat with her to watch it.  Every time the moon came on she would cheer and ask me to lift her up to the TV so that she could touch it as it passed across the screen. 

Then she ran into the bathroom and returned with something cradled in her hand. She stared at it for a moment and then brought it over to show me.

As she held out her hand she whispered "Moon Doll."

My heart just about split in two.

I love her so much.

The social story didn't work out quite the way we hoped.

I read it to her. And she was very sad.

She understood what it was saying, about not going to school until the eighth. There were tears because eleven days is a very long time.

But she hasn't put her jacket and backpack back on since we read it.

So the drama and disappointment of each morning ended, after about an hour, and she's been able to enjoy her holiday, now that the expectation of school is out of the way, and is actually having a lot of fun, which is wonderful.

I texted her therapist and told her that it worked, not quite how we thought, but that it had been awesome none the less.