Patrick and the Chewable Dinosaur Necklace

It's funny because when Maggie was first diagnosed with autism I probably bought every single sensory thing that I could find and she broke most of them within a few days, and really didn't care for any of them particularly much.

The things that she loved were never things that were designed for kids on the spectrum. They were usually some wonderful random thing that had caught her eye, like the shiny red boots that she got for Halloween when she was three (and wore through three pairs of), or some tiny red ball or small block that she would hold in her hand and carry around all day as if she'd found a tiny treasure.

As a result of my experience with Maggie, it had been a while since I had really looked at items designed for kids with sensory needs. 

But a few months ago a certain five year old began destroying the collars of his shirts by chewing on them and no amount of reminding him to stop really did anything. 

Of all of my kids I would say he has the least sensory processing... quirks... while a certain three year old who only finally made his peace with socks last month very likely has the most. 

The shirt thing though, was driving me up the wall. And it reminded me that chewable necklaces exist and that maybe they would be useful in this situation.

So Patch and I sat down and went through the chewable necklaces on Amazon and he found one that he really, really liked a lot (affiliate link here, although apparently the blue is sold out at the moment) and a few days later it arrived and it quickly replaced the collars of his shirts for his favorite thing to bite. 

He is definitely a fan.        

And here's his favorite necklace after a day of being worn.

And because Patrick never passes up the chance to make a video and talk and talk and talk on camera, here's the video that he was so very excited to make about his necklace.

He's such a funny kid:




After watching the video while I was making it James was so convinced that the necklaces are the coolest thing ever that there is now a green dragon chewable necklace on the way to our house too.

And I may be hushing his older brother every time he opens his mouth to suggest that he's copying him.

The Calming Clippers Haircutting Kit: James Gets a Hair Cut

I filmed this yesterday, nervously.

James has a hard time with sounds.  Any loud or out of the ordinary sounds are likely to cause hysterics and cutting his hair with clippers was impossible.

He wanted a hair cut, but I knew clippers were out of the question.  When I saw the Calming Clippers I decided to give them a try.

And now he has a cute new hair cut!  These were definitely a success.

7 Quick Takes: Friday Night Maggie Edition

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

-1-

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

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

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

-2-

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

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

-3-

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

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

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

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

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

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

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

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

-4-

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

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

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

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

-5-

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

-6-

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

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

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

-7-

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

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

I'm kind of in awe of this strategy. 

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

She's my little mastermind. 

For more Quick Takes head over to see Kelly at This Ain't the Lyceum. 

Highs and Lows

A sensory break... in Mae's favorite place.

Yesterday I came downstairs and said "love you" to Maggie and she replied by looking at me and smiling broadly and saying "Love me!!!!" in her beautiful little voice.

Today there was a technical glitch with a new program that's being used to track her progress (although it promises to be awesome once it's worked out) and so she spent some time playing with some new picture cards while I walked back and forth holding James in the living room, watching Sadie do her copy work at the dining room table and watching Maggie sit on the floor using a trampoline as a table while her therapist asked her questions.

"Which one jumps?"  Her hand shot out and she tapped the picture of the frog.
"Which one do you wear on your head?" She quickly tapped the photo of the hat.
"Which one do you go potty in?" Her hand quickly moved over to a picture of a little potty chair.

Earlier in the day I'd watched as she verbally rattled off labels to pictures, and I found myself smiling as she followed two step instructions like "clap your hands and cover your mouth."

It's amazing watching her demonstrate how much she can do now, how much she understands.

At the same time these last few weeks have been rough (in so many ways).

You see in many ways we're incredibly blessed.  Maggie very, very rarely has meltdowns where she's completely inconsolable.  She's actually very good at knowing when she's feeling overwhelmed and grabbing my hand and leading me to the stairs and putting my hand on the gate to let me know that she needs to go up to her room to be by herself.

There's one sound though, that causes an instant meltdown almost every single time that she hears it.  And that sound is her big sister coughing.

When Sadie coughs there is, almost without fail, a nearly immediate reaction.  There's usually a pause of maybe two or three breaths followed by the saddest, most heartbreaking cry that I have ever heard.  And she'll cry and cry and cry, collapsing on the ground, very obviously in pain.

A virus has been floating around the house and when Sadie began to sniffle I knew we were in for a stressful week.  When the sniffles turned into a cough the tears began.  And then they stopped.  At it's worst, Sadie's cough stopped bothering Maggie.  When the cough sounded wet Mae was suddenly fine (which leads me to believe it's something about the sound when she has a dry cough).

Then Sadie started to get better and the dry, hacking, asthmatic cough returned (only much worse than it usually is, since she's getting over being sick on top of her usual all-the-time cough)... and so did Mae's tears.

On Saturday night, after a day of coughing and trying to keep the girls separate since being near Sadie's cough was unbearable for Mae, I was at wit's end.  My heart ached for Maggie, since she's obviously in pain (and since, as I watched her curl up in her sisters' bed I began to realize how much she was missing Sadie) and for Sadie, who's desperately trying not to cough and who is so sad as she watches her sister crumple to the floor every time she coughs.

So on Sunday I made a purchase on Amazon and today it arrived:

I tried them on.  Sadie tried them on.  Then Sadie and I talked about how Maggie would probably like them better if when she first saw them Sadie was wearing them (the best way to make Maggie like a dress is to have her sister try it on) and so Sadie put them on and I brought Maggie downstairs from her self imposed time away.  And she tried them on at least a half dozen times, for five to ten seconds each time, and Sadie even coughed once when she had them on and she was fine.

And then, when she was done, Patch grabbed them and wore them for a solid half hour straight:

I'm cautiously optimistic that they may work for their intended purpose.  They've been working with her on wearing headphones during therapy, so I'm going to bring these with her various therapies and hopefully she'll realize how much they help and start wanting to wear them more and more.

How to Make Your Very Own Mermaid Tail: A Tutorial

 

 

Have you thought about making your own mermaid tail?

 

I began making mermaid tails because my four year old daughter loves mermaids, but wasn't a fan of the sensory socks they used at OT.  I knew that if she tried one she would love to sensation, but she couldn't be convinced to climb in. 

 

I had a feeling if I turned the sock into a tail that she could wear she would benefit from it.  So I started sewing and quickly discovered that my other kids loved the mermaid tails too.

 

You don't need a pattern to make this mermaid tail.  Here are step by step instructions that take you from measuring through sewing, so that you can create your very own custom tail.

 

To make this tail I used about a yard of spandex, three feet of elastic and a little less than 2 square feet of felt.

 

 

 

How I Became A Helicopter Mom...

Whenever the topic of "Helicopter Moms" comes up, I find myself growing increasingly uncomfortable. 

It's trendy these days to sneer at the Helicopter Mom. 

Over the past year I've heard a number of examples given of Helicopter Moms.  It can include everything from hovering over your child as they toddle around the playground to believing that they have a food intolerance or allergy and preparing meals that don't include the thing that makes them sick (I'm not even kidding.  That example of "helicopter parenting" has been given here on this blog in the comment section in the past.). 

The thing is, I know that from the outside looking in I absolutely, far more often than not, would answer "hey that's me" to those questions that would cause one to fail the imaginary helicopter-litmus-test that I see being flung here and there and everywhere. 

Going to the park is a two person job in our family.  I haven't done it on my own since... well... two children ago.  When Sadie was three and Maggie was one, and not so very fast or steady, I could do it.  I could be everywhere at once, hovering and making sure everyone was safe.  I put them in their little red wagon and pulled them to the water park near our home or unleashed them on the almost always empty playground near the law school at Ave Maria and for the most part we were fine. 

We only had to go to the ER once. 

But now it requires a team effort.  We need more than one parent helicoptering around after these small, quick, darting children to make sure that they stay safe. 

And failing to be vigilant enough, quick enough, everywhere at once?  That's one of my greatest fears.  Because I don't just have to be a helicopter parent.  I have to be one of the very best helicopter parents.  I need to be a Super-Ultra-Helicopter Mom to make sure that Maggie stays safe. 

The funny thing is that in some ways, in a controlled environment where there's nothing that can mortally injure a certain daring four year old, I'm pretty laid back.  In our yard or at a totally enclosed playground, I can sit and watch her climb way too high on the playground equipment and be totally at ease.  I've been watching her climb since shortly after she learned how to walk (she walked across the room on her first birthday... so it's been a while) and she doesn't fall.  So when she's climbing I tend not to hover as closely. 

The thing is even when she's climbing I need to make sure she's not going to suddenly jump down and take off at a sprint.  So, while I might relax a tiny bit,  I still tend to hover.  And when I'm tired, Paul hovers.  We take turns.  It's exhausting. 

Sometimes other parents look at me like I'm crazy, running after this not-so-small child, making sure she's never more than an arms length away, and I can see in their expressions that obviously I'm that helicopter mom that everyone on the blogs feels so morally superior to and writes so sneeringly about.  I'm That Mom.  The one they're talking about in those articles everyone shares on Facebook. 

As if the hovering isn't bad enough we have the food allergies too.  My diaper bag has a pocket for the inhaler with the spacer and face mask, two epi-pens and a generous supply of Benadryl melts that come with me everywhere I go.  And you might see me fling myself on top of a pretzel like I'm protecting her from a live grenade if she happens to come across one that's been dropped at the playground... because I've seen what happens if she eats it and I don't want to live that again. 

Not infrequently my friends share those posts that basically describe the Helicopter Mom as a blight upon western civilization.  Usually the author of said article gushes about the superiority of Free Range Parenting. 

And it kind of feels like a punch in the gut. 

I never finish those articles that talk about how much better off my kids would be if I just stepped back and relaxed. 

I don't comment and say that relaxing is a luxury, that for some of us the stakes are too high and turning away, glancing in the wrong direction for a second too long could be deadly.  I don't point out that when you have a child who runs and runs and runs just to fill that need to fly across the ground, thinking of nothing else, then you innately understand that it's a luxury you can never allow yourself. 

Because you know that that child doesn't understand that a moving car is dangerous, or that she won't swim like a mermaid if she plunges into that river, or runs straight into the path of that big kid swinging as high as he can on the swing. 

I'm sure that someone will comment and say that "it's different."  That "most helicopter parents don't have those reasons that you're talking about.  They're just being overprotective." 

Yet many do. 

I feel like the Mommy Wars, in general, are becoming less popular.  A lot of parents have realized how ridiculous it sounds to insist that there's only one way to parent, only one right answer, on most issues at least.  But the same people who would likely agree that brow beating someone for giving their child a pacifier is absurd, still wouldn't think twice about rolling their eyes about the Helicopter Mom who doesn't let their child out of their sight. 

If you do find yourself watching "Helicopter Moms" with disdain when your at the park, or the zoo or just walking down the street, then maybe you could do me a favor. 

The next time you see a mom hovering, staying close to their child, helping them do something that you assume that child should be able to do on their own at "their age," maybe take a step back and give that mom a break. 

Not all disabilities are obvious.  And even if the child doesn't have a disability, do we really need to fall back into yet another round of "my way is better than your way." 

Isn't that what we'd all like to get away from? 

Whether you're a Free range or Helicopter, or whether you find yourself somewhere on the vast expanse in between, I think we can hopefully agree that most moms are just doing the best they can keeping their kids safe and healthy. 

And maybe, just maybe, this is one more subject in the aptly named Mommy Wars that we can put to bed. 

7 Quick Takes: Saturday Night Edition

-1-

James has finally drifted off to sleep on a blanket near my feet.  There was no way he was going to allow himself to be out of my sight tonight, although he usually falls asleep happily in his bassinet.  Not today, however.  Today he was happy in his bassinet.  As long as he could see me.  The second I was out of his line of sight he would scream his head off.  Then I would step back into his line of sight and he would instantly stop and smile at me.

I think he's got my number. 

-2-

Today Paul took Patch and Sadie to the store while I stayed home with Mae and James.  After they left Mae wanted to go upstairs and I decided as a special treat, I would show her something.

You see, most of the playing in our house is done downstairs in the room where Mae has therapy, which is connected to the living room.  The kids hardly ever play in their rooms.  Especially Patch's room, since it's tiny.  So I took her up into his room and she saw, for the very first time, his "big bed."  

And she couldn't believe her eyes.

She spent the next hour cuddling with his stuffed animals, steering the ship around the seven seas and loading every single toy that she could find into the bed so that she could sail off with all the loot into the sunset.  

-3-

Today, my least favorite moment of all the sensory seeking moments, ever, occurred.  

I won't name the child in question.  However.  It won't be all that hard to figure out.  Because... talking...

Anyways.  

Someone, in the midst of a sensory seeking moment, nearly knocked out/pulled out one of their permanent teeth.  

Can I tell you how queasy just the thought of it makes me.  Blood doesn't really bother me, but permanent teeth being knocked out?  I shudder to think about it.  

So I asked the aforementioned child exactly what happened.  "Did you get hit in the mouth?" I said.  "Did you fall?"  The child shook their little head.  A second later they made a strange movement and this conversation followed:

Me:  "What are you doing?"

The Child (TC): "I'm showing you through interpretive movement what happened to my tooth."  

Me:  "Could you tell me through words instead?"

And then came the explanation.  

Apparently I need to fill my house with chewy toys.  

The tooth is still in place.  Right now.  It's loose.  And I guess I'll be calling the dentist first thing Monday morning.  

Why do these things always happen on weekends?  And who manages to knock out their own front tooth?

-4-

Sometimes I can't help but think that it's a very good thing that Patch isn't in day care, because, as the third child, he seems to be growing in to quite the little bruiser.  And while he's definitely made huge strides in not biting and hitting almost immediately after trying to use those two particular strategies to get his way, getting him to stop shoving people has been a bit tougher of a habit to break.  

And for some reason I have a feeling that if he were in daycare or preschool I would probably, very shortly, receive a phone call telling me that he'd bit a half dozen children and that I needed to come pick him up immediately.  

Thankfully he wasn't involved in the tooth incident... but oh to be two!  It's amazing how he can be so snuggly and such a rough and tumble little guy all in a five minute span!  

Patch with a curtain rod he pulled down... and weaponized.

Mostly though, he's seems perfecting playing the part of annoying little brother.  Today he was sitting a ways away from her and she complained that he bumped her and as I said the words "give your sister a little more space" he flung himself on top of where she was laying and went totally limp before rolling dramatically to the side.

He may be going for some sort of Annoying Little Brother of the Year award.  

-5-

I'm pretty sure that letting Sadie watch Master Chef Junior online and then agreeing to throw in cooking classes as part of our homeschool curriculum is one of the best things I've ever done.  So far she's made cupcakes, potato soup, salmon pasta and waffles during her first week of lessons in the kitchen.  She begs to help with dinner... and she's practicing a lot of the skills they work on in OT in the kitchen.  

She's already begging to take over cooking entire meals on her own, which I don't think we're quite ready for, but as it is right now having someone who's begging to do every little task in the kitchen is a big, big help!

-6-

The cold this year hasn't been anything like the cold last year (so far), but it has been cold enough lately that we have been spending a lot of time inside.  

My plans for winterizing the house were pretty much destroyed by a certain little mermaid.  

We tried to put plastic over the windows... and then staple up felt once the first layer of plastic was destroyed and a second was put up, but after seeing the complete destruction of anything that kept her from looking outside (or even pressing her face close to the glass) I realized that we were on the losing side of this particular battle. So the windows have stayed uncovered.

-7-

When I was pregnant with James I didn't buy many things.  One tiny splurge I did make was when I was that the Blooming Bath was on Zulily.  And now after writing that last sentence I just searched and found out that they do have the Blooming Bath in Ivory on Zulily right now for around $20 less than it is on Amazon (the sale ends in nine hours).  

As you can probably tell I'm definitely a fan.  And so is James.  I had to work to catch these frowns!

For more Quick Takes head over to This Ain't the Lyceum!  

And suddenly there were sentences!

"Come over here!"  Paul turned around from the doorway and repeated the words to me.  "That's what she just said!  She just looked at me and said 'come over here.'"

We're having a sudden explosion of language in the house, two and three word phrases being bandied about in a beautiful clear, crisp little voice.  She dropped something and looked at one of her favorite therapists and said "where'd it go?"

As I tucked her in last night she grabbed my hand and said "I want..." her voice trailed off.  I knew what she wanted.  I'd been saying "round and round the garden, like a teddy bear, one step, two step tickle under there" while making little circles on her hand before tickling her.  She'd said "Round and round" at least twenty times.  This time she stopped and thought while I waited for her to ask for round and round again.  Instead she said "Mama.  Happy!" before going back to asking to be tickled.

After a year of days sprinkled with one word at a time, those hard won words are now being fitted together into sentences.  Although the sentences aren't always so clear.

Last night after Patch got out of his bath and into his pajamas he made a mad dash for my room and threw himself into the 'big bed.'  Mae, who'd already been tucked in, yelled from her doorway to let me know that she had seen him sprint by and that it wasn't fair that he was in the big bed.  So I opened the door and she sprinted by and climbed up and slipped under the covers.  I climbed in between them, making sure each had a little bit of pillow (Patch was trying to take all the pillows in the bed for himself) and listened as Mae started to say a sentence over again.

"Ha bow ee ur ahff a ight."
"Ha bow ee ur ahff a ight."
"Ha bow ee ur ahff a ight."

Suddenly it clicked.  At least the first half did.

How about we.  How about we.  How about we.

As she continued to say the whole phrase seemed just out of reach.  The intonation and meter to the way she said the words tickled at the part of my mind that was trying to make sense of what she was saying.  I followed her eyes up to the light and fan in our room.

How about we turn off the light.  How about we turn off the light.  How about we turn off the light.

I listened as she said it again and again.  It was a perfect fit.

So we have phrases and sentences (although I may only understand a quarter of them) in sudden abundance.

Yesterday I spoke with her OT and she thinks that the sensory problems and frequent melt downs we've been facing could be linked to the sudden burst in language skills.  Sometimes huge steps forward are accompanied by difficulties in other areas (especially sensory areas) and that may be what that is.  Her little mind and body are working extra hard growing right now (she also seems to be going through a growth spurt) and haven't quite adjusted to all the changes, making this month and exciting and yet difficult time.

And I can hardly wait to hear what she has to say next!

The Roller Coaster: Sensory Issues and Storms

We've had a tough week.

I suspect that some of you out there reading this may have experience with sensory processing issues and a sudden uptick in meltdowns and sudden changes in sleep patterns (in this case suddenly waking up at two a.m. screaming and inconsolable) when there are pressure changes and storms... because I've heard mention of this sort of thing in some of the groups that I'm in and we while weren't spending much time outside before this cold snap hit (so I don't think it's just because we've been cooped up inside), the sudden change in behavior seemed to perfectly coincide with the arrival of the storm.

It's been hard because unlike in the past, when we could remove the cause of discomfort (like with gluten or casein), I can't change the weather (if that is in fact what it is).

The hardest part of all this is that suddenly any sort of instrumental music is (suddenly) clearly physically painful for her.  After bursting into tears any time there's been any sort of music, she ran over to me a little before five tonight after her sister had asked if she could watch Cinderella, and brought me her sleeper and made it clear that she wanted me to help her get changed and then took my hand and led me to the staircase, because she wanted to go upstairs rather than hear the sound track to the movie, even though she was a room away.

Even upstairs we could just barely hear the music come on and the tears were about to flow when I started to sing a song about rainbows that we used to sing when I was in preschool and with a great effort she sniffled and started to repeat part of the song after me, finally smiling and joining in the fun.

Instruments are not okay, but voices, human voices, are the best thing ever.  She's been singing Twinkle, Twinkle Little Star and brought over a little stuffed spider to show me that she wanted me to sing The Itsy Bitsy Spider for her while she danced around the living room, holding the spider and saying the word "Ba-la-rin!  Ba-la-rin!" (ballerina, ballerina) over and over again, quietly to herself.  And the rainbow song that I sang to help calm her down is a new favorite as well.

It's been a roller coaster of a week.  Thankfully, alongside the low points, those moments filled with tears because she heard overheard a song, there are high points as well.

This morning I held her on my lap and she pointed out the different colors on the stripes on her sister's sheets.  Earlier in the week I gave her a paint brush and a cup of water and she painted "grapes" on the window and asked me to write the letter M by taking my finger, dipping it in water and holding it up to the glass and saying "M for Mermaid!  M for Mermaid!"

Tonight, we walked upstairs after changing into her sleeper, and she tucked herself into a little cubby behind her sister's bed, wrapped in her sister's favorite blanket.  She took my hand in her little hand and intently studied it, wiggling her fingers back and forth while pressing on my joints and saying "Bones.  Bones."

A few minutes later I went downstairs to get her a snack, and by the time I walked back upstairs she was sound asleep in her little safe spot, finally exhausted and asleep after a long day.

I think noise canceling headphones may be in order (if we can get her to wear them).  And I hope whatever it is that's making her so uncomfortable passes quickly...  I hate this helpless feeling when it comes to making her feel better.

On Sleep, Service Dog Dreams and Caffeine

The days are going by so quickly right now that sometimes I feel like I go to sleep on Monday night and wake up on Friday and wonder where all the days in between have disappeared to.

James is "sleeping through the night."

Alright, I should really say he's sleeping through the night by pediatrician standards, which means that he sleeps for six consecutive hours each night, between the hours of 11 pm and 5 am.  At 5 am the entire house wakes up to Maggie loudly telling us that its morning.

Can I just say that never in my entire life have I been less of a fan of day light savings time?

I woke up this morning thinking, "That's it.  We have to move to Arizona.  Or South Africa.  Or anyplace without Day Light Savings time."

Because Maggie, with her rigid little internal clock, does not recognize the time change.  And she wakes up her sister who yells "Mommy, is it morning time yet?  Maggie and I are awake!" which is immediately followed by Patch in his room yelling back "Guppies?  Guppies?" because he's hoping that he is going to be allowed to watch Bubble Guppies (his obsession) at some point over the course of the day (as a side note the second most talked about topic that Patch brings up is his need to have a puppy... which I think we can blame on a particular episode of Bubble Guppies...).

And then it's all over for poor James, who might be able to sleep for longer than six hours if his brother and sisters weren't so enthusiastically loud at 5 am every morning (or if 10-11pm wasn't his favorite play time).

And nothing, from staying up hours past her bedtime to having everyone stay in their room until the time that we wish they would sleep until (6 am) makes a difference.

In terms of sleep problems, it's not a horrible problem to have.  I mean, Sadie woke up every hour for the first eighteen months of her life, which means that I spent a year and a half stumbling around like a blurry eyed zombie, so really, I know that the sleep situation could be much, much worse.

Still, I'm hoping, really desperately praying if I'm honest, that her service dog application is approved.  We made it through the first application and collected the information from her psychologist and doctor and therapists that we needed for the next round and now we're waiting to hear back if we'll be approved for a home visit.  I've read stories about how great the dogs can be at night and how calming they can be, and so I'm hoping every day that we hear good news from them sometime soon (it can take 24 months though to move on to the next part of the process... so we may be waiting a while).

And if anyone is still following along in this stream-of-consciousness-totally-random-post can I just say that I might be going downstairs in a few minutes to find a sugar free caffeinated beverage to offer my two girls (does that sound crazy to you? It does to me!) because earlier this week there was an incident involving Maggie having gluten, which led to me giving her a cup of coke in order to get her to take the medicine she needed to take that I was praying would help, since we had nothing else in the house that would mask the flavor/texture of what she needed to drink, and all the while I was thinking the result would be completely and totally disastrous but instead it was truly amazing.  While there was a (much smaller than in the past) reaction to the gluten, the immediate reaction of the caffeine was shocking.

Mae started talking more (which was truly surprising after having gluten), sat at the table for just about three hours doing her work and was incredibly focused.  Throughout the day she kept running over to me to touch my cheek and kiss me, and while that isn't unusual she was just so calm that I began to research and then talked to people with more experience about these things and it seems that we were seeing first hand how effective caffeine can be at helping people with ADHD focus.

Since two other members of the family have ADHD I guess it shouldn't be totally surprising if Mae might too (although how would we ever be able to tell with all the sensory seeking bouncing off the walls going on), but regardless, a small amount of caffeine seems to seriously help her focus and make her feel better, so I'm going to experiment with small amount of tea and honey to see if it makes a difference with her frustration level throughout the day.

And in other news Sadie's occupational therapist convinced me to start a brushing regimen that involves the brushing of limbs with a therapeutic brush followed by joint compressions, every two hours during the day.  We'd talked about doing it with Maggie, but I'd never started the two hour routine, so I decided if I were doing it with Sadie I might as well add in Mae, and then Patrick runs over yelling "Too!  Too!" and insisting he needs to be brushed as well, so that's a new component of our day and it's going to be interesting to see how it fits in... because once speech (finally) starts I believe we're going to have 12 therapy sessions a week crammed into our schedule... which might explain why time is flying by so quickly!

An Amazing Moment in Our Day

Today we had an amazing moment as we were waiting for Sadie's occupational therapist.

A little girl came up and looked at the fish tank near where we were sitting. Sadie, who happens to be the most outgoing person I've ever met in my entire life, jumped up and ran over next to her and started knelt in the chair next to her facing the tank, so they were side by side and said "Hi, what's your name?" 

The little girl responded with her name and then Sadie asked her how old she was and she said she was six and then when Sadie said she hadn't heard her she repeated it again.

I didn't think anything unusual had happened.

And then her grandmother looked at me with wide eyes and said "she has never in her entire life responded to another child."

Can I still blame the pregnancy hormones for how teary I got with happy tears at the joy on her grandmother's face (although I totally did manage to keep myself from crying!)!

Amazing Us All: A Mae Update

Mae has been busy amazing us all.

Yesterday she looked over during her therapy session and saw me hand her sister an eraser.

Now the thing about erasers is that they're just about one of the most appealing things in the world to Mae.  First off they're the perfect size.  They fit in her hand just right.  And she loves toys/objects/just about anything that fits in her hand that way.  Secondly, they're the right texture and flexibility.  They're smooth and also bendy enough to be interesting.

So when she saw me hand the eraser to Sadie she sprinted across the room and proceeded to try to steal it from her sister.  Her therapist quickly said: "Mae why don't we find a block to go in your hand." and much to my surprise Mae stopped and backed away from the table before turning and running straight across the room to a small plastic bag that was filled with one of her therapy activities for the day.  Inside, the bag held four animals and a red lego.

While the red lego was obviously what Mae was thinking off when she went for the bag, she quickly put it to the side as the animals captured her attention.  "Dog.  Tiger.  Cat.  Hippo."  She picked up each animal and put it in a line.  We'd never heard her say hippo.  In fact I'm fairly certain I'd never heard her spontaneously say any of those words.  She glanced over and at me and smiled proudly.

She found two of her sisters old pairs of tights
and put them on over her sleeper.
She was definitely having
a sensory sort of day!

Her therapist asked her is she wanted to show me how she can make a pattern and she took picture cards and quickly did that.  Her therapist started the pattern: hat, bird, hat, bird, hat, bird (or something like that).  After adding the correct cards in order to the pattern Mae turned and looked at me and smiled broadly.

Then she showed me how she could match objects.  She's been matching picture cards with objects, like a picture of a couch with our couch, a picture of a television with our television.  Now she had six cards in front of her and she beamed as she was handed a card for a chair and quickly matched it with a table.  Next she matched a card with a backpack with a school bus, a slide with a swing, a diaper with a picture of a toilet and two others that completely escape me right now.

After matching them she turned again and smiled at me, obviously very pleased with herself for knowing the answers, and happy to have my attention while Sadie read her "fun" book for the morning.  Her therapist told me that when they first added the cards they'd worried some might be too abstract (like bus and backpack, since Mae doesn't really have any experience with how those things would be connected) but that she got them right away.

And of course there was this.  She drew this during therapy earlier this week.  She loves to draw... and I'm fairly certain that this is Boots (from Dora):

Perhaps the best part however, is that none of those moments were the best part of the day.  The best part of the day came when she walked over and stood by James' head while I was holding him and looked down at his face tenderly.  She touched his cheeks gently, resisting the urge to squeeze them (you can always tell she wants to, but she's been battling the impulse of those pinchable little cheeks) and then said "Love, love, love" softly while continuing to gaze at him.

Love is exactly right.  There was nothing I could have loved more about that moment!  While I'm proud of how much she's learned, how she can identify all the letters in the alphabet and loves to count and can tell me she's four and can say that her name is "Mae!" in a sweet little sing song voice, my favorite thing to see is her love when she gazes at her little brother!  It's such a wonderful gift!

One Year from the Diagnosis

A year ago this morning I was waiting by the phone for a phone call from the speech pathologist who'd helped administer Mae's ADOS test two days earlier.  It was an excruciating wait.  I was torn.  In the previous weeks I had poured over books on autism and I was fairly certain Mae was on the spectrum, but at the same time I felt like she'd been really well behaved when we'd gone into the test and I was suddenly terrified that she wasn't going to get the help that she needed.

I was in the kitchen when the phone finally rang and I practically jumped across the room trying to get to it and after answering heard those words that she qualified for services and after asking exactly what that meant was told that she was officially autistic.

I didn't burst into tears right away.  Later that week, a few times, the overwhelmingness of all that I didn't know and understand would rear it's head and I would burst into tears in my room, but those days were also an odd mixture of relief, tempered with large amounts of worry because I had no idea what came next.  I'd begun to gain a tiny understanding that the stereotypes of autism that I'd seen portrayed here and there on TV were just that, stereotypes, but I still had no idea what to expect from the future.

In ways it was overwhelming but at the same time I felt like I needed to rush right in, as if movement, simply doing something, would keep us afloat.  I wanted to do everything at once, do all that I could, read and research and learn and find a way to bridge the gap in communication that was between us.

Suddenly our calendar was full of meetings and doctor's appointments and tests that I was jamming into the moments when Paul wasn't at the law school in class so that someone could watch Sadie and Patch.

Before that day I hardly glanced at my calendar.  These days my calendar feels like an extension of my body that I bring with me everywhere, because if I don't a doctor's office that I've been waiting for months to hear from will finally call me and tell me that we're at the top of the waiting list and I absolutely must be able to schedule that appointment (which will still likely be two months out) at that moment, because there is no way I am even allowing the possibility of giving up a spot that we've been waiting for for a full calendar year.

This month I slapped open my calendar and showed it to Paul.  "At this moment, we have 26 therapy sessions scheduled and eight doctor's appointments/meetings/tests in the next month" I said, to give him a feeling of what we were facing.  "I imagine there will be more doctor's appointments by the end though.  There are six days (four Sunday's and two Saturday's) when we have nothing scheduled."  There always are.  And they aren't all for Mae.  There was Patch's allergist appointment and blood test for venom allergies and my OB appointments thrown in to, along with a check in with the doctor who diagnosed Mae, after which we were all a flutter for at least a week because the progress that she had made was so hugely evident on the test.

So we're busier than we were when we first started out.  Our lives look different than they did a year ago... and I am so grateful for that fact.  The daily meltdowns at 4 pm are gone as are the three hours of waking and yelling and jumping from 1 to 4 am.

We've learned so much about Mae in the past twelve months. We've learned how important her diet is and what a huge impact it has on her behavior.  We've learned that she's smart as a whip and that the local university is happy to have her come in to help train grad student's because she keeps everyone on their toes, thinking ahead of what they're doing to what they're about to ask and giggling as she tries to trick them into doing what she wants to do instead.  And I'm thrilled to take her in because she has so much fun doing it.

In the last year we've watched her blossom into an amazing, happy little girl who isn't in pain all the time because of her tummy problems, and who loves mermaids, fish, and impatiently waits by the door each and every day for her therapist to arrive to start the fun.  She isn't quite the climber she was a year ago.  She's a tiny bit more cautious, although not quite enough to keep me from worrying.

The other day as we walked out to the car I let go of her hand to open the door and she glanced around, surveying the street we live on.  Then she put her little hand out flat and thrust it at the world as if to say "stop" before turning and climbing into the car and walking to her seat.  I'd known from the second she looked around that she was thinking about running and I'd quickly put down the folder I was carrying with me in case I had to chase after her, but this time she didn't take off at a sprint.  It was a first.  A year ago 10 out of 10 times she would have sprinted just to feel her legs pumping as she propelled herself away as quickly as she could.

In a way this morning I find myself still a little shocked and surprised.  Can it really have only been a year since she was diagnosed?  In some ways it feels like a lifetime, like something we've always known.  And the progress that she's made, could that really have happened in a single year?

Every week she does something to amaze me, something that seemed unimaginable a year ago.  Between drawing pictures, making up signs and using words, and also through her many varied expressions, the world of communication has expanded in the last year far more than I could have imagined that morning when I was wondering what the future held.  And while this roller coaster has had it's share of tumbles as well as climbs, the general direction is evident by her joyful smile as she races past me while I type this, stopping to show her sister how to blow a kiss.