On Disabilities, Educational Decisions, and My Crisis of Faith

I've written and rewritten this post, both typing out the words and forming them in my mind over and over again and then pushing them away, resolving not to share them with the world, and then feeling them bubble up again as I wonder how many others have felt this way, and if my writing might help someone else out there feel a little less alone.  And then I wonder if I can tie the ends together of the many subjects that lead together to my ultimate point, and if anyone else would even see the point buried under all the moments that led up to it. 

So maybe I should begin with a question? 

Can we really expect our children to be for life, that is to support life in all it's stages and forms, when all they ever see is people who are exactly like they are? 

I've written those words down as a special needs mom, because that's one of the things that I am, but in this current moment as the world swings round, through events that are crushing and sorrowful, I realize that it can be read in more than one way. 

I'll write from my own experience though, and let whoever ends up reading this whole thing take from it what they will, mostly because right now in this moment, I'm too exhausted to do much more than untangle the threads before me and see where they lead. 

Or maybe I should have begun with a statement? 

I realize that these past months have led me through a crisis of faith of sorts, although not the kind I ever expected, because it wasn't a crisis of believing that Christ died for our sins, or of believing that the Eucharist is the body and blood of Christ, or of believing that our Pope is the successor of Saint Peter, or of anything of that sort. 

It was a crisis that came from the realization that there seemed to be absolutely no place for my family within the everyday life of the Church as people come together and form communities to worship God.    

And if I'm honest, if I hadn't clung with every ounce of strength to that belief in the True Presence, I have no idea where I would have ended up. 

This is how I've arrived at this place... and how I've been slowly moving past it.

This past year has been a crush of appointments. 

Every time I think I've gotten one thing worked out, that I'm sure that at this appointment the specialist will say that maybe we just need to go to yearly appointments, the opposite happens and suddenly he needs to see us in four weeks (which, thank goodness, is really more like six or eight since he'll be booked solid that far out) and oh, I need to refer you over the see (insert name of another specialist) and I'm going to advise that we order this particular test (that of course requires sedation, which is always kind of traumatic) because we've been taking things very slowly and monitoring the delay, but after a year I think we need to do some more in depth testing to eliminate physical causes for what's going on. 

We generally have somewhere around 50 appointments a month.  I stopped counting a while ago.  Most of them are therapy appointments.  A lot are doctors appointments.  I think we had around 90 doctors appointments this last year.  Give or take a dozen.

There are the ABA appointments (which Maggie begs to go to even on weekends, and where she tells her therapists that she loves them), and speech appointments and OT appointments. 

There are James' PT appointments and his bi-monthly appointments where an early interventionist comes out the house and works with him on speech and fine motor skills and gross motor skills and asks if he's been pointing at all, and has he lined up cars again? and where Patch laments the grave injustice that he only has speech during the school year, which he probably doesn't even need anymore, and that no one brings out a giant bag of toys for him to play with every two weeks.  Oh and had I gone in to get James fitted for orthotics yet?

There are allergist appointments where the doctor orders more blood tests too further investigate how allergic Sadie is to certain things, and looks at her results and then looks shocked when I say they haven't given me an epi pen for her yet, and there are the various other appointments with our developmental pediatrician who has been keeping a close eye on things because she senses there is a theme of some sort in the delays that she sees and she, like the geneticist and neurologist, is waiting to see where the test results that our insurance finally approved (chromosomal and DNA testing) lead. 

And of course there were the OB appointments and the hospitalization for the flu and then for the hospitalization for the kidney infection and all the other scares that this last pregnancy, which I consider my only really hard pregnancy, entailed. 

In a way this year has knocked me off my feet.  I find myself thinking "just keep swimming, just keep swimming" because if I stopped I knew the exhaustion would catch up to me. 

Which is why when Sadie asked me if she could go to school at our parish school I stopped and really, really thought about it. 

Because while I'd made a point to get her involved in as many activities as I could squeeze in, from ballet, to Little Flowers, to a couple playgroups, and I'd just bought a brand new boxed curriculum because I wasn't quite up for piecing my own together anymore, I also knew that I was getting to the point where I was stretched so thin that she needed more. 

So Paul and I talked.  And prayed.  And talked some more. 

And I told her that yes, I would set up an appointment and we would go and take a tour of the school. 

She had made her first communion the week before, and she had made friends, both through Little Flowers and at the retreat.  She was thrilled to walk around the school with an administrator. 

And as we walked I mentioned that she did have ADHD, but she that she works really hard to focus.  It mostly was seen in the way she flaps her hands when she gets really excited.  And that she was going to be tested to see if she was on the Aspie end of the spectrum, because her pediatrician had a hunch that she might be on it, but that that mostly was seen in her passionate interest in various subjects, like how she walked around reciting the names of the planets when she was three, or how she can recite word for word answers to questions about our faith from the catechism. 

The conversation turned quickly to his own experience with people on the spectrum being violent.  I assured him that she isn't violent.  She's never been violent.  Not at all.  He nodded and continued to tell me about the school but at the end of the tour he told me that they would need to see her test results before they would even consider admitting her. 

Fine, I thought, still rather disturbed at the conversation that seemed to indicate that he thought all people on the spectrum were violent.  Then I received an email saying that she was welcome to come and try being a student for a day at the school.

She was over the moon. 

I coached her on standing in line and raising her hand to ask or answer a question.  And I walked her into the cafeteria, where three little girls squealed her name and ran over to hug her and my heart just about burst. 

She had friends there.  The parish is orthodox and I knew she'd receive an amazing education there.  It was really all I could ask for. 

And so she went to school and came home and told me about how much fun she had and I received an email from the special ed teacher about how well it had gone and asking me to come in for a meeting on the following Wednesday. 

I relaxed.  They'd seen how well she would do.  I'd go in and sign the papers and we'd be set. 

As you may have guessed, that wasn't how things went. 

I went into the meeting and heard that at the first communion retreat she'd had an "incident."  The "incident," was that there was a game being played where kids were chosen and she hadn't been chosen.  So she'd started to cry. 

That was it.  No yelling.  No screaming.  No tantrum of violence.  Just tears. 

But it didn't really matter.  I suddenly had the distinct impression that the "student for a day" day had been granted so that he could look for an excuse.  A few times, I was told, she was confused about what she was supposed to be doing in class and looked around the room instead of watching the teacher.

Was this real? 

Then the administrator began to explain to me "what autism is."  It doesn't matter how smart they are, he said, kids with this disorder.  And as he spoke I began to realize that my explanations and the ample education I've received in the last three years since Mae's diagnosis wasn't going to get me anywhere when speaking to this man.  The stigma and his own misconceptions were far too entrenched. 

The classes I'd taken, the trainings I've received, the books and studies I've poured over, the thousands of hours of therapy sessions I've sat in on, weren't going to change his mind. 

Similarly when Paul, who has ADHD, spoke with him he received a lecture about "what ADHD is."

Why wouldn't I drug her?  We'd tried ADHD meds, I explained.  They were a nightmare.  They made her incredibly anxious and depressed.  She could focus far better on them, could sit perfectly still for hours at a time solving math problems for fun, but she was miserable and sad and not the little girl I knew. 

So it wasn't an option?

"I'm not going to allow her into this school," he said, "unless I am one hundred percent certain that she will succeed."  I stared at him.  How can you ever be one hundred percent certain that any child will succeed?  But I couldn't get out the words.  I was completely blindsided.  It was absurd. 

"We would love for you to be a (insert name of parish) family... but..." 

I thanked him for his time and hoped that the papers from the test results could convince him that she would do fine in school.

I called a social worker who told me that I would probably have trouble with the parochial schools but who put together every evaluation they had including an extensive report by a psychologist that said that she was extremely good at math but had poor gross motor skills and could benefit from OT (which she'd been discharged from because she made such great improvements) and speech (which she'd been attending and which the school offered). 

The social worker highlighted the suggestions, making it clear that she shouldn't need any special exceptions at the school.  Everyone from her developmental pediatrician to the psychologist thought she would do well. 

I brought the stack of papers straight over and handed them in and waited for a call. 

And I thought.  And thought.  The statement about only allowing in kids that they were 100% certain would succeed went through my head over and over again. 

And the doubt crept in. 

Did I want her going to a school where an administrator had such a skewed view of kids with disabilities?  Where he was only willing to take on those that he saw as a sure thing?  100 percent?

I thought of my own education at a Lasallian college and the motto, "Enter to learn, leave to serve."  I thought of the kids I'd gone to school with who had gone into the teaching program and gone out to teach in inner city schools.  Were they only taking on kids that were a "sure thing?"  Somehow I doubted it. 

I thought of my own father who was a superintendent for decades, and who also taught educational leadership at the same Catholic college I attended.  I thought about how he'd often said that anyone could catch a kid making a mistake.  The truly great educators caught them doing something right. 

And I couldn't help but feel that if she went to this school everyone would be waiting for her to make a mistake.  She'd already been criticized for crying when she didn't get picked during a game.  It had now been brought up three times by two different people as Paul began to have conversations to try to clarify that she was entirely capable of attending the school.  Could I really expect that she would have a fair chance?

Every day she asked me if they'd said she could go to school yet, and every day the pressure grew.  Why weren't they saying yes, she asked, what could she do to help?

My heart was breaking.  At nine months pregnant I cried many, many tears.  And the words "we really wish you could be a ______ family" went through my mind over and over again until I felt sick. 

As a special needs mom I've felt how hard it is to find any place for my family within the Church.  There are young family events at our parish, but they always involve, and in fact revolve around, food (and Maggie just doesn't understand yet why she can't have the same thing that everyone else is having).

We used to try to go to things, but inevitably she would somehow get her hands on a doughnut and be sick for two weeks and if I have to pick between not almost going to the hospital and going to a parish social event I have to pick not being sent my our pediatrician to the pediatric emergency room for gastro problems. 

Mass is hard.  Sometimes it's impossible.  Sometimes I leave halfway through in tears. 

I hadn't sat down during Mass in years, living perpetually in the vestibule, but that didn't stop the people who were really disgusted by those with disabilities (or small children who don't sit perfectly still) from shaking their heads or glaring when we'd come forward for communion (although I should note that most people are not like that... it's just those who are stand out in a very special way...). 

And in the moment when all these thoughts broke upon me I felt done.  I was angry. I felt like I'd tried to find a place for my family and that that place just didn't exist.  And someone had finally said it out loud. 

And it made me think hard about how we welcome those who are different from us into the Church.  Do we welcome them?  Or do we glare, or ignore them?

If our children only ever see people who are exactly like them how can we expect them to be unafraid of those who are different?  If we've banned all children with disabilities from our parish schools, and made it nearly impossible for their families to be part of parish life, can we really expect those same children, or their families to warmly welcome a child with disabilities into their hearts if that is the path that their life takes them down? 

Being around the differently abled can teach us how wonderful the different gifts we're given can be.  Banning those who are different from sight only increases the fear of what we don't know. 

We can preach about being open to life and accepting children who aren't what the world sees as perfect as a gift, but do we welcome them into our parishes on a practical level once they're in this world?  Or do we need to be 100% certain that they'll be successful as the world measures success? 

On day after picking up Maggie I felt inspired and drove over, across town, to another parish and pulled into the parking lot.  I drove slow past the playground and pointed it out to her.  "Look at this school!" I said enthusiastically.  "Look at how big it is.  And look at the church.  It's beautiful!  Oh and the playground is huge!" 

On Sunday we went back to that parish.  We asked if they had a cry room and were told that they did, but they would love for our children to be there in the main room with everyone, and if they had a hard time with that there was a beautiful glass walled chapel off to the side where we could still see everyone.  If that didn't work there was a cry room available.

For the next month we spent Mass in that side room, sitting together as a family for the first time in years.  Two weeks ago Tessie was baptized there.  Sadie's test came back totally normal and we applied and she was accepted into the new school. 

She's got her uniform and her book bag and she's practiced reading just about every night.  She's gone to drama camp and vacation bible school and zoo camp to help "practice" a bit for school.  And she hasn't asked me in weeks why the other school wouldn't let her go there with her friends.  She's been won over by the impressive playground and went on a tour of the school and met the new priest that's just arrived and the principal. 

This last Sunday Maggie was having a harder time than she has since we'd made the change.  She kept making little squeal sounds, and giggling.  The room was almost empty, but an elderly woman sat on the other side of the room, and I saw her glance over at us.  I was nervous and self conscious as I held Maggie and hushed her and tried to keep her from disturbing anyone. 

At the sign of peace the woman walked over to me from the other side of the room.  I smiled nervously, the baby on my chest, holding tightly to Maggie, as she smiled and told me that she loved hearing my daughter's beautiful voice and that she should really be the children's choir and that both girls were simply beautiful.

As she walked away I almost started to cry.  It was the first time someone had said something kind about the struggles that we've had at Mass, in a very, very long time, outside of when we've visited the parish where we were married and the girls were baptized in California. 

I hadn't thought I'd needed those words, that sort of acceptance, but as I struggle to hold back tears even at the memory I realize that it was a sort of gift she gave me,  that I desperately needed after this past year, and especially after the last few months of feeling very much like we didn't belong. 

I'm not sure how to end this.  This next year we will have on child in parochial school, one in public school (I think), and one who's homeschooled, plus a baby and a toddler.  I guess all that is enough for another post. 

I'm looking forward to the changes that I didn't think I'd ever want and a short while ago didn't expect.  All of this should make the cascade of appointments more manageable. 

And we'll move forward to see what the next year has in store for us, hopeful that these changes are the right ones and excited to see how life will change with this new change of plans.

And I'll be praying that we can all accept those who we feel are so very different than we are, and that we can welcome them into our lives and realize that perhaps the differences aren't as great as we imagined, remembering that Christ died for their sins as well as our own and that he must see the division in this world with great sadness.

The CDC, Women, and the Advice Everyone is Talking About

As I wrote this post I realized that, sadly enough, it should probably begin with a disclaimer.  Part of this recent CDC campaign against women drinking any amount of alcohol, involves suggesting that alcohol is the (or a) cause for hyperactivity in children.  As I'm about to argue against the recent statement, which has been making waves, I should probably begin by saying that I don't drink when I'm pregnant.  Or when I might be pregnant.  And as I'll delve into later in this post, I tend to have a pretty good idea pretty early in the process.  

If you've been around this blog for a while you may know that I tend to fall into the super-careful end of the things-people-do-while-pregnant spectrum.  Unpasteurized cheese, raw seafood and unheated lunch meat aren't on the menu these days.  After I had my miscarriage in the second trimester following food poisoning, I became hyper-vigilant about any and all things that could go wrong.  

I thought I should start with that though, since I do have two kids who are hyperactive, and since that was one of the CDC's angles.  

I'm not writing this because I love my liquor and don't want to put down the wine glass while I'm growing this baby.  I'm not a big drinker.  I probably have around 12 glasses of wine a year when I'm not pregnant, spread out around the calendar.  It's not that big a change to not drink when I'm pregnant.  

Even so though, I was bothered by this weeks CDC headlines.  

A few days ago the internet erupted in a storm of criticism over a statement the CDC made  that women of child bearing age should either be on a form of birth control or avoid alcohol altogether (see the infographic here).

This can hardly be surprising in a culture that often seems to view the female reproductive cycle as a complete mystery.  Myths about the female body and how it works are far more common than knowledge of basic bodily functions, so I guess I can't be shocked that the CDC feels the need to make blanket statements that are more than a little overenthusiastic in their scope.

Over the years I've been met with various levels of shock that I can identify on the calendar when I ovulated and how far along I am in a pregnancy, even though that information has never matched up with where I should be based on my LMP date.

This was never more apparent than it was with this pregnancy (although my OB is great about listening and believing me when I say the dates are different).  I knew that I ovulated on the 52nd day of my last cycle.  That meant that at the first appointment, as I sat in the office, I was 5 weeks pregnant, not, as the chart insisted, 10 1/2 weeks pregnant.

That's quite a difference.  Two ultrasounds, one at five weeks and one a few weeks later, confirmed that my dates were accurate down to the day.

Still at every appointment the LMP date at the top of my chart throws everyone off.

This is where I think a little information could go a long way.  If we could strip away a little bit of the mystery of the female reproductive cycle, so that the vast majority of women understood that they can't get pregnant every. single. day. of the month, we'd be taking a step in the right direction.  Understanding our bodies can help women who might not otherwise have a clue about what's going on, decide that maybe over indulging tonight, isn't the right choice

 In this article the CDC tells us that most women do not realize that they are pregnant until somewhere between four and six weeks into the pregnancy.

Babies usually implant somewhere between days 9-11 (although it can happen as early as 7 days after conception or as late as 12 days).  That would mean that, using gestational age, babies usually implant around the fourth week of pregnancy, around when a woman might realize her period was supposed to start in a 28 day cycle if you were using old rhythm method.

So if you have a drink one day or even one week after conceiving, it's unlikely baby has even implanted and tapped into your nutrients.

And that got me thinking.  With my five previous pregnancies I began to suspect something was up days before implantation was supposed to occur.  Ten days before my period was expected could I really be experiencing the symptoms that I thought I was experiencing?  Why was nursing already excruciating, which is only the case when I'm pregnant?  And the nausea?  How can that happen before implantation?

How could I be fairly sure that I was pregnant, when supposedly from everything I'd been told, it was impossible to tell.  Some people said that it was just progesterone levels rising, as they do at the end of any cycle, but that didn't explain why pregnancy after pregnancy I could tell the difference between a non-pregnant cycle and a pregnant cycle.

A study from the NIH suggests that it is possible.  EPF (early pregnancy factor) is an immunosuppresive substance that the body releases 48 hours after fertilization.  I can't find any studies on the effect of EPF on the body (sadly the main purpose of identifying it at the moment seems to be to see how it could be used to identify pregnancies for early termination...), but it brings up the possibility that when a women thinks she might be having pregnancy symptoms before they should even be possible, she really might be experiencing something beyond PMS.

Which is a round about way of saying that, like our cycles, whether or not we're pregnant isn't always the mystery that it's made out to be.  I've spent too much time talking to women who are very aware of their cycles and the possibility that they could be pregnant, or are not pregnant, to buy into the idea that we can't have an idea of what's going on with our bodies at any given time.

For it to work, we need to pay attention.  Women need basic information about how their bodies function, which is sadly lacking for many.

I think that's what bothers me the most about the CDC announcement.  It underestimates women, and men, on so many levels.

It seems to imagine women across the country, of child bearing age, as binge drinkers, unable to decide for themselves if they might have done something that could result in the birth of a child in the not so far off future.

It also imagines that only women who aren't taking contraceptives can become pregnant, which as most adults know, simply isn't the case.  Contraception fails far more often than most people would like to admit.  But talking about the real world failure rates of contraceptives isn't as popular (even if they are rather dramatic).

I'm not going to delve into the choice of drinking an occasional alcoholic beverage while pregnant.  This article by Forbes has some interesting information against drinking even a drop.  I tend to think that an occasional drink during pregnancy isn't damaging, as it's portrayed in the US healthcare system, since drinking some alcohol during pregnancy was not uncommon during most of human history, and since it is still common in much of the world.

And with virtually no actual data on the effects of a single drink, I'l leave it to other women to decide on the level of risk that they feel exists.

Still, if the CDC is ready to tell women that we need to completely step away from having a single sip of alcohol, even if we aren't pregnant, than I think they might want to take a look at this study in the American Journal of Epidemiology.

In this study it was found that a woman's drinking may not be the only thing that affects a pregnancy.  The study showed that men and women who had ten or more drinks a week, while trying to conceive, were between two and five times more likely to have a pregnancy end in miscarriage.  This was the case in the study even when only the men were the ones drinking.

And since it's long seemed as though a single drink and twenty drinks were indistinguishable to many in the hallowed halls that issue decrees on what should and shouldn't be done, then perhaps men of childbearing age should abstain as well?  No?  Too ridiculous?

Or perhaps it shows us how ridiculous this entire thing is?

If the last few weeks of Zika and overbearing CDC statements have taught us anything, it's that women bear the brunt of instruction on what we should and shouldn't be allowed to do with our bodies, generally from groups who crow about bodily autonomy when it comes to matters of life and death.

I have a feeling that this has far more to do with the pushing of contraceptives on those few remaining who don't use them, amping up the pressure to do the "responsible thing" rather than on actual scientific data, which is rather lacking in this area.

On this one I think I'll have to trust individual women's judgement over the CDC's dire warnings.  Most women these days are on a form of birth control.  Most who aren't have an idea of what might happen if they have sex.  And women of all ages generally have an idea of what it means when their period is late if they aren't on some form of contraception.

 In fact, with the numbers of failures and women who don't have regular cycles on birth control, I'd be surprised if the numbers the CDC is throwing around doesn't have something to do with the fact that a woman on the pill (or some other form of birth control) might not realize she's pregnant and might keep drinking for far longer than a woman who isn't contracepting, and who is expecting a period sometime in the near future.  Just a thought.

Advertising the "perk" of not having a period is awfully fashionable these days.  And when contraception fails (as the above study I linked shows is very likely to happen over a ten year period with actual use), not everyone is willing to have an abortion (thank heavens).

With actual use failures being what they are, maybe the CDC's next step should be to look at how many babies whose moms were drinking heavily who thought that they couldn't conceive when they did, because they were taking a pill, or popped in a ring, or had an iud.

That would shine the light in a place they don't want us looking though.  It's easier to blame those who aren't marching in lock step to their tune, of being the problem, than it is to realize that the solutions they're proposing don't make all that much sense.

Throwing pills at people (or better yet!  An IUD that a woman can't discontinue using on her own!) is easier though, than finding actual solutions, whether those solutions include eliminating standing water or taking a closer look at the science behind how much alcohol actually causes disabilities like FAS in children.

Why would we need data though?  Over reaching government scare tactics are easier.  It only takes an afternoon to come up with an infographic.  Answers supported by research are obviously harder to come by.

Besides answers like that, the kind supported by data and statistics, are tricky things.  They might not support what the population control agenda of the moment wants us to hear.  And sometimes the message is more important to the people handing out decrees, than the truth.  

On Gluten, Caffeine and Things that Still Surprise Me

I don't know how it's possible, but seeing things that I know demonstrated in a very clear way, still somehow comes as a surprise when it comes to Maggie's diet.  

One of the main ways that this has become clear to me over the past two years is with Maggie's reaction to gluten.  

In the beginning, when I realized that we were seeing major behavioral differences with her as a result of my elimination diet cooking while we were trying to figure out Patch's allergy, I didn't realize how big of a deal it was, or how minuscule amounts of wheat could cause huge reactions.  

And even after it happened the first time, when she had a tiny bit of wheat for the first time in months (one bite of breading on a tiny piece of fish) and was sick for two weeks, I wondered if it was a fluke.  

Then it happened again.  It was play dough the next time.  And the same thing happened.  

By the third inadvertent exposure a few months later, I could no longer really wonder if there was a relationship between the many physical and behavioral issues that erupted with a teeny tiny bit of gluten.  

Despite seeing the reactions in action multiple times, when it happens after three of six months of protecting her from getting into something that will make her sick, I'm still somehow shocked.

I suppose, after seeing how small things can have such an enormous effect, I shouldn't be surprise that a little bit of Coke is having an enormous impact on our lives.  

At least that seems like it's the reason behind the week we've been having.  

In the last week since the neurologist suggested we give Maggie a little bit of Coke each day we've seen some enormous changes.

The hugest is that she's incredibly calm.  She also hasn't been waking up at 3 am and jumping on the bed for 3 hours.  One day she even slept until 6:30.

It was amazing.

The calmness has not gone unnoticed.  Her speech therapist commented on how incredibly calm she was and how many words she was using.  Her OT said she'd never seen her appear so organized and engaged.  And her therapist today told me that she'd been incredibly calm and had the best day since she's worked with her (which is saying a lot since this child loves going to therapy and is in tears if we arrive early and she can't go straight in and start her day).

And the best part is that I've been playing with the Coke amounts and it seems like it only takes a very small amount to have an effect.  I started out giving her about five ounces a day, but she wouldn't finish the cup and the focus and calmness seem to last between 2-3 days.

I'm still playing with the amounts but it seems like somewhere between 3-5 ounces, every other day (and maybe even every third day, I'm going to try to push it back a bit more and see how it goes) results in a calm, less stressed kid, who's better able to do the things she wants to do and make the people around her understand what she's thinking.

I am leaning towards thinking that the Coke is effecting her hyperactivity more than it's effecting any headaches she might be having, but it will be interesting to talk to the neurologist in a couple weeks and see what he thinks.

Despite seeing how it's working out first hand, it's still really hard for me to believe that it's having this big of an effect on how our days go and how she's feeling.  I mean it's Coke.

I'm just glad that right now she seems to be feeling really quiet good and I hope it lasts!

And in somewhat related news (at least to the first part of the post), Patch went in for his yearly allergy retest and he tested negative for every, single allergen.  Next week he goes in for a dairy challenge in the allergist's office!

After not allowing him to have dairy for his entire life up until now I am a little nervous about the challenge, but I'm also super excited about the idea of him having outgrown his allergy!  I really hope the challenge goes smoothly and he can taste ice cream (from cow's milk) for the first time in his entire life!

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!

ADHD: Why I Can't Quite Hop on Board the "It's Because Kids Are In School Too Long" Train

One of the things that I've found since diving in to various parts of the special needs parenting community is how little I know about just about every part of each diagnosis we've been given, and also, how many misconceptions are out there, floating around, some wildly popular, that in actuality can seem to have very little to do with reality.

I didn't have many misconceptions about Sensory Processing Disorder because SPD isn't something you hear about all that often, that is at least until you have a child who has sensory issues and you begin to learn about SPD, and suddenly you see the acronym popping up here and there and everywhere.  And maybe SPD was the easiest for me to wrap my head around because my entire life I've been "weird" about certain sounds and textures.  The sound of certain fabrics still make me wince and having to move Paul's college hologram sports cups from the dish washer to the cupboard requires careful maneuvering to not touch the offensively horrible hologram-y texture on the sides... so while I don't exactly understand what my sensory seeking girl is going through with her need for movement and spinning and being upset down, I do at least have a tiny bit of personal insight into how things that the rest of the world doesn't think twice about, can drive a person up the wall.

And Autism?  Well, I imagine I could fill an entire blog with the host of stereotypes and misinformation that's out there.  The day the doctor told me she was certain that Mae was on the spectrum, I knew virtually nothing about ASD.  I'd read articles that came up in my newsfeed, so I knew that there was a different "cause" being circulated every ten minutes or so, but other than that I knew next to nothing about what it meant to be on the spectrum.

Fast forward to this month.  I sat in an office while a doctor told me that Sadie had ADHD, knowing that I knew next to nothing about this latest acronym to be thrown our way.  I knew that on the list of words that are particularly scary when a doctor says them (at least after the last year and a half in this house) it was way, way down so that my main reaction was mild surprise (it probably helps that one of my favorite people in the whole world was given this diagnosis and is doing quite well).

If I really had to put down on paper the sum of what I knew about ADHD I would probably have said that the kids are wiggly and just need more time to run around and be kids.

This week an article became rather popular floating around Facebook.  It talked about the slew of children diagnoses with ADD and ADHD and offered a reason for the large numbers.  It basically said that the reason was because children need more time to be kids and run around, that they don't belong sitting in desks all day.

As you can imagine, I tend to agree that kids should be allowed lots of time to be kids.  But I also found myself pausing because... well... Sadie doesn't sit in a desk all day.  In fact, she doesn't sit in a desk at all.  By lunch time she's finished all of her school work and is pretty much free to do whatever she wants for the rest of the day (at this moment she's totally engrossed in spelling while standing at the dining room table).  We move from the dining room table to cuddling on the couch as we work through our schedule.  She's not spending all day cooped up holding still in one spot.

In fact, our days tend to look like this:

PE

And art...

"Recess"

And this:

And sometimes this:

It's not exactly like she doesn't have room, space and plenty of time and freedom to "get her wiggles out."

So even before the packet from the neuro-guy arrived yesterday, I felt like there had to be more to it than just "kids sit in chairs all day and that's why they're being diagnosed with ADHD" which, while I can certainly see would be aggravating to the "problem" I can't see, at least in our case, it being the cause.

And while my biggest girl was described as "wiggly and squirmy" during her evaluation, the reasons for the diagnosis went far beyond those symptoms.  Some parts of the evaluation I found absolutely unsurprising.  I already knew that she has a talent for math and that she has a very good memory.  She only has to hear a poem a couple of times and she'll be nearly reciting it, which is why, for memory work, we go through about a poem a week (and usually the poems she selects are long!).  So the fact that she scored high in "overall memory, new learning capacity, encoding, storage and retrieval" didn't shock me.

However I was surprised to see a few of the other results.  On the "Sensory-Motor" index words like "1st percentile" came up along with problems with the "Visual-Spacial" index and "visuoconstruction."  These indicate problems with "auditory and visual modalities" and fine motor coordination.

Basically these are apparently the glaringly obvious test results that point to ADHD.  In her case, as it's shown in her results, it was less about being squirmy in her chair and more about being able to do math problems but having problems copying simple designs accurately and not having the best fine motor skills.

I'd actually noticed this early this week when we were doing a history project.  After watching her  identify Mesopotamia and Egypt, and trace the Nile and Tigris and Euphrates on a map and write Akkadian Empire in the appropriate place (while ranting about how angry the dictator she'd just learned about made her... because she took major offense to the story of Sargon convincing the army to overthrow the king after being raised in the palace and was even more furious that he became dictator...) she struggled to draw a "pyramid" next to the Nile as the instructions said.  Making the points meet at the corners was obviously frustrating and difficult.

And that is exactly why I am thankful for these test results.  Because at the time I thought "how can a kid who does fraction work sheets for fun, not be able to draw a triangle... a shape that she's known for years?"  Following the results I can see that simple things like drawing shapes are something that are clearly a challenge and that we should devote a little more time too (and her art book, which I hadn't made a priority, actually starts at that level, with copying simple shapes and designs, so we already had some of the tools we needed, we just had to get to work using them).

I do think that kids need time to be kids, to get out and play and have fun... but I also think the "ADHD is a result of being in a chair all day" may be simply a result of confusing correlation with causation.  Certainly kids are wiggly, but at least from what I've seen personally, wiggliness is a symptom of something else that's happening, just as it often is with sensory seeking kids who are wiggly because something else is going on.

That's actually why SPD was my first thought when I took Sadie to the doctor.  Those "auditory" and "visual" difficulties have a lot in common with SPD (actually I'd be surprised if she didn't test on a sensory test as having sensory difficulties). Sadie's doctor explained that it's a result of neurological immaturity there as a result of the ADHD.

As we've ridden the roller coaster of this past year, I've had people tell me that a diagnosis isn't important... because it doesn't actually change the issue that you've already been dealing with.  In a way that's true.  A diagnosis doesn't erase the challenges.  But it's a starting place to learn more and I know in my case as a parent, understanding has definitely increased my patience a hundred times over. A diagnosis isn't an excuse, but it can help things that just don't make sense make a little more sense.

These challenges, as with any challenge that life throws at us, often seem to do a great deal of good forming character.  In the past months I'd already seen Sadie overcome her natural tendency to always be moving to buckle down and do her work well.  Self control was already falling into place as she got older.  Now, with this new knowledge, I can help her work on those other areas that are challenges and hopefully find an OT to help us work out a plan for those challenges that would use a little extra help.  And on days when the wiggliness seems to be winning I can get out the exercise ball and let her bounce on it while she works.

Disclaimer:  All of this is written from the point of view of a parent who doesn't have any formal medical training and who's just been going along through all of this learning all that I can!  

Edited to Add:  When I first wrote this I skipped who in our family has ADHD because he wasn't home to ask and I wasn't sure he'd want me to share... but since he read this he emailed me to give me the green light and... Sadie comes by her diagnosis honestly since her Dad has the same one!  Which is one reason why I absolutely believe that success is very possible and why I know she'll have a good example of someone who's facing the same challenges and overcome them by working very, very diligently to succeed.  

A Princess and A Diagnosis: The Day I Started to Learn about ADHD

I've written this post in my head, at intervals along the way, dozens of times.  Still, I kept putting off actually posting anything about the subject.  I wanted to wait until we had a diagnosis... and yesterday, after months of doctors appointments, we were given one.

Yesterday was one of the few weekdays when Paul didn't have his bar prep class and so I crammed it full of doctors appointments that I needed to get out of the way, but where an extra pair of hands wrangling babies would be incredibly helpful.

Appointment #3 was right after lunch and I'd almost canceled it a half dozen times.  Every time I thought of the appointment the first thought that would come to mind was that I didn't care what the results said, they didn't really matter to me anymore, although once, not all that long ago, I'd cared enough to go through the long slogging referral process and actually set up not one, but three appointments.

I'd actually called and cancelled this particular appointment once, sighting the fact that I had no free mornings until the second week in August.  I was told that the doctor only worked in the mornings, but when I said, "Okay, so can you schedule for the second week in August?" they found a way to squeeze us in.

The appointment was for Sadie.  A long time back, after Mae got her diagnosis, I'd started to worry about her, because many of the questions that they asked me about Mae applied more to her than to her little sister.  She is a flurry of constant movement, her hands flutter constantly, she can hardly contain the energy that radiates from her tiny form every second of the day.

It was her fluttering hands, like a little bird ready to take flight at the dinner table, that finally caused me to call and make an appointment with her pediatrician.  We went in and met with her doctor for about five minutes.  Suddenly the attending doctor and a social worker were in the room, telling me that they wouldn't be surprised if she was on the spectrum and giving me a handful of referrals and people to call in the following weeks.

The first results that came back were the blood test.  She is allergic to wheat, cats, dogs and most pollen and grasses.  Wheat was the only shock.

The next test was with a speech pathologist and with the doctor who tested Mae for both ASD and who tests her for her cognitive progress each year.  The results came back quickly.  They definitely didn't think Sadie was on the spectrum.  Her ADOS test was basically a fantastic fairy tale.  When they dumped the toys out in front of her she picked up a teeny tiny book and proceeded to launch into a ten minute story with dragons and princesses and fantastic adventures.

Next came the testing with a local neuro-psychology clinic.  This one worried me.  I googled them and found that the head doctor had a series of one star ratings and that pretty much every patient who'd taken the time to go online and talk about him blasted his bedside manner as horrible (which I can now say seemed ridiculous because he was great with Sadie and was totally friendly throughout the appointment).  One of Mae's workers told me that they frequently came back with ASD results when everyone else said the kid wasn't on the spectrum.  I took a deep breath and went in for the first appointment.

At the first appointment we were first introduced to an idea that had never occurred to me before.  You see, Sadie didn't talk until she was three.  She still has a slight delay, although it's been steadily improving and the doctors so far have seemed to agree that at this point it's correcting itself and that she doesn't seem to need speech therapy (I've seen a lot of improvement since we do so much poetry in her classes).

This time, however, the counselor tied in her constant ear infections during the first 18 months of her life (I'd say she had about 18) with the fact that she hadn't spoken until much later.  He thought that it was very probable that she hadn't been able to hear well at all during that period of time and that that would explain the delay.  In other words, the infections pretty much ended when she hit 18 months and 18 months later she started talking... which was likely 18 months after she really started hearing.

Enter Mommy guilt.  How could we have missed that?  I was less surprised that her doctor at the time had missed it because we had left his practice for a reason (he missed colic, reflux and gave her adult immunizations... It's not really a shocker...).

A few days later I went in for Mae's OT eval and as I filled out the auditory processing section, checking no to pretty much every question (it's the one area Mae tests as solidly normal in) I realized I could check yes to every single question for her big sister in that one category.  And that's when I started to notice how often sounds hurt her ears (she used to sob in Mass uncontrollably every time everyone clapped, which at our old parish was every single Mass).  She still complained of sounds hurting almost every day, while be simultaneously too loud when she spoke almost all of the time.

She went in for the testing and I found myself annoyed as I found out that there wasn't a sensory section at all (the one test I'd requested was the only one no one ordered apparently).  It was all "math and letters and stories."

I wasn't worried about that.  I do school her everyday.  I know where she is with all of those.

Still I went into the office yesterday and met with the doctor, slightly nervous after reading all those reviews.  Sadie bounced off the walls.  She invited him to her birthday party about ten seconds after meeting him.  She bounded to the window to look out.  She hung over the edge of the couch and colored in a coloring book.

He began to go through a giant packet of papers.  She scored extremely high in some areas.  Her math scores were grade levels above what was expected for her age.  The other scores were solidly in her age range with the exception of reading, which was just slightly below (all things I pretty much knew, although it was kind of neat to hear that I wasn't just being a proud mama about the progress she'd made in math and how well she does in it).  I explained that reading was stressing her out so much last year that we'd actually taken a break for about six months and now were picking it back up with much more success (last night she just started reading every word in her lesson for the day easily).

But he had a diagnosis.  She definitely is not on the spectrum, he explained.  But she does also very definitely have ADHD.  He talked about worries and options.  I explained that at this point I wasn't really too worried.  After we started reading social stories and really buckling down to start first grade most of my worried evaporated.

And we discussed how it is likely that there's a sensory delay, since she doesn't really slow down long enough for her sense to process things, which can result in a sort of neurological immaturity.  And the fluttering is likely simply the burning off of that constant stream of energy coursing through her little body.

Then we talked about school and how it's working out.  When we do school she sits in her seat and focuses really well on her work.  When we don't do school... well those days are pretty chaotic... and that's one of the reason we have launched straight into first grade.  She begs for school.  The structure of having school in the morning seems to calm her for the entire day so that she can play differently in the afternoons after her work is done.

So we have no plans for medication or really anything at this point.  It does make me especially grateful that we're homeschooling because I do think that it would be more of a problem in a classroom setting, whereas one on one works perfectly (I think that will be less and less necessary as her reading picks up more and more since she can sit for hours looking at books as it is).

I'd still love to see sensory tests for her, just to give me ideas where she is (and what activities would help), because it does seem pretty clear that she has Sensory Processing Disorder, especially in auditory processing... but for now that can wait.  The only place that I've found that would test her so far is the university and they don't accept any insurance and the test is pricey.  She's such a combination of seeking and avoiding that it's not nearly as straight forward as it seemed with Mae.

Talking to Mae's OT we do suspect that a lot of the clumsiness we see probably has to do with the auditory processing and early ear infections too.

At the moment though, I feel like we're on the right track and have been for a while.  Equal parts running around outside and structure in our mornings seem to be the perfect fit at the moment... and if anything I can always add more running around outside to the mix.

Although now my curiosity about ADHD is piqued and I imagine that ADHD, along with autism, SPD and allergies will become my new favorite subject to read up on.  What a learning year this has been!

In a way it's funny... because as with autism and Mae, as I watched Sadie following the appointment, I found myself more and more amazed with the person that she's growing into and the self control that she has developed and frustrations she's overcome these last few months on her own.

And that is exactly why I am grateful that I went to that appointment.  This diagnosis really doesn't change anything.  But I've found that knowing that there is an actual challenge there that she's struggling with has helped my imperfect patience stretch further and further.  It isn't an excuse for behavior that's any different from what has already been expected, but it does make it easier for me to take a deep breath and not grow frustrated when those moments arrive and expectations have to be explained an extra half dozen times before they start to sink in!