Saturday, July 16, 2016

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.

Thursday, July 14, 2016

Annery's Handmade Rosary Roses

When I first saw that Annie of Annery at Home was making rosary roses at her shop Annery's Handmade, I knew that they would be perfect for any of kids in our house. 

In case you've never heard of rosary roses, they're soft roses that can be held in a child's hand, often while they're learning to pray the rosary.  The one's that Annie makes are made of soft, beautiful cotton and they were a hit the moment the kids laid eyes on them. 

When I was given the chance to review a complementary set I jumped at the chance and when they were arrived they were every bit as soft and perfect for little hands as I'd imagined they would be:


I gave them to Sadie, who had just made her first communion and who has loved the rosary since she was small.  I knew that she would love the idea of rosary roses and that she would benefit from having something to hold in her hand while she was praying the rosary. 


The second she opened the package she had to use them: 


And while she was focused on praying I was snapping pictures so that I could share what a hit they were here.


However the pictures I really should have snapped were the ones of Patch trying, for weeks after they arrived, to steal the roses from Sadie.  He found them every bit as wonderful as Sadie did and made a point of sneaking into my room (where Sadie kept them to try to keep them out of little rosary rose swiping hands) so he could have rosary rose time. 

These roses are such a good idea for any little (and not so little) kid, but I would also especially recommend them for kids with sensory issues.  They're made with 100% cotton yarn, so they're soft, and they just have a nice weight for holding and squeezing.  They also give small hands that might not be ready for little tiny beads something more solid to hold onto. 

So if you're looking for a wonderful gift for a child in your life I highly recommend these (and Annie's shop!).  They definitely have the seal of approval from the kids in our house! 

Wednesday, July 13, 2016

Our Little Firecracker

Sadie had her birthday mapped out to a T and so when Maggie's big day arrived two weeks later I wanted to make sure it was something special too, even though she doesn't yet give us a list of what she has planned for her big day. 

The morning started with mermaid presents, and now, nine days later, she's still talking about "mermaid presents" so I think that we can safely say that they were a hit.  I was amazed at the number of mermaid products on toy store shelves this year, which made shopping for Maggie really easy.  And after the first few presents, once she realized that just about everything fit the mermaid theme, she became very excited about opening them:


Patch was really excited too.  And kind of devastated.  Because November still feels like it's a very, very far ways off when you're only three and it's actually June/July, and after having two summer birthday parties for his sisters, he was having a very hard time understanding why his birthday wasn't right this second too.


This was the mermaid stash when all was said and done:


Tessie slept through the excitement.


After her school we took her to Red Robin (because she loves the gluten free chicken burgers there:


And Sadie lost another tooth! 


And Tessie continued to sleep through the excitement:


After lunch we swung by Cold Stone for dairy free sorbet:


And then we headed home so that Maggie could take her mermaids for a swim:


After all, what good is having so many mermaids around the house if you can't put them in the pool on the back deck?


Meanwhile I rushed around inside and made the cake that I was too tired to bake the night before (after all I was only five days post partum...) and threw together the goody bags that Sadie had meticulously planned for Maggie's birthday:


We repeated the Bubble Guppies theme for a second year in a row:


Both the toys and the cake were a success:


And then we went outside for fireworks:


These weren't big fireworks.  But the kids thought they were pretty awesome:


Except for James.  James insisted that he did not need to be held and that he needed to be on the edge of the porch watching the action... so that he could hysterically cry every time a firework was set off, running away, being scooped up and cuddled and then struggling to go back and run to the edge so that he could watch it all over again. 

And he did not want to go inside.


Here he is about to insist that he needs to get down to go over and watch another firework. 




And I continued to try out the ring sling that I made, which Tessie is definitely a fan of, although I think I still prefer my Moby wrap, 90% of the time:

And all I can see in this picture is how swollen my ankles and feet still were at this point!  It lasted
a few more days before my ankles kind of returned and looked like ankles again...

The kids actually insisted that we take this picture and then were all totally goofy when it (and five others like it) were snapped.


Once the fireworks were cleaned up (they were done on a wetted down piece of cardboard since it had been so unseasonably dry here), the kids raced down to see the little spot of grass that had caught on fire during the show.  It was very, very exciting for them:


And then Sadie got control of the hose and the uncontrollable giggling began:


And that is how our Fourth of July birthday part went!  I can't believe that our little firecracker is six! 

Monday, July 11, 2016

Tessie's Baptism

On July 3rd, at five days old, Mary-Therese Philomena was baptized at our parish. 

And because of a certain sibling the event was not without a mermaid incident.

I should have known as I navigated the center aisle, that something was amiss.  And knowing Maggie and the fact that she'd had two little mermaid dolls clasped in her hand as she approached the baptismal font... I should have known what the problem would be:




Thankfully the deacon was incredibly good natured about the whole situation as he fished out the mermaids.


Meanwhile I rushed over and changed Tessie out of her church clothes...


And into her baptismal gown.  I hadn't had time to quite finish sewing the last buttons on during the move, but with the help of a safety pin it worked.

Her Godparents were represented by proxies (and say a prayer for a special intention if you have a moment!):


Welcome to the Church, Mary-Therese Philomena! 



Thursday, June 30, 2016

Meeting Tessie

Two nights ago, that is to say, the night before my fifth C-section, I couldn't sleep.  I paced.  I lay in bed.  I tried to force myself to go to sleep, which was pretty much impossible.  I started to fall asleep and then jerked awake.  Sometime between the sun sinking behind the horizon and morning I stole about two hours of sleep... and then it was four a.m. and it was time to get up and go to the hospital. 

So Paul and I hopped in the car and headed north.  We were up before the sun. 


Things went fast once we got to the hospital.  I changed into a gown.  After three tries an IV was finally taped into place (ouch!).  I answered a few dozen questions and managed not to cry when it took two tries to place the epidural. 

It was the tenth time a needle had been that close to my spine for a spinal or epidural and my fear may not be quite a phobia, but it comes close, and I was hugely relieved when it was over. 

Me, arriving at the hospital.

And then Paul got to change into his neat little outfit.  And of course it was an outfit that I had to document. 


I was happy that my OB, who has been my doctor for the past three pregnancies, but who won't be seeing patients anymore after yesterday because he's going to be moving to an administrative job, was the one to do the C-section. 

At 8:58 am Mary-Therese Philomena let the world know that she had arrived with a loud squaking baby cry.  The doctor announced that she was a solidly built baby, which she is at 8 lbs 12 ounces (although that does make her the second smallest of the babies in our family), and after toweling her off for about a minute she was placed on my chest, where she immediately began to nurse. 

My doctor told me that my uterus is in amazing shape, that the scarring wasn't bad and that there was no thinning and no windows!  If I hadn't been lying on a surgical table I would have danced around. 

Tessie nursed for the half forty minutes it took to sew me up.  And then she nursed for another two hours in recovery.  She nursed on her way from recovery to our new room.  And she nursed as we settled into our new room. 

Everyone who watched her nurse for basically the first three hours and fifty five minutes of the first four hours of her life was pretty impressed that she was able to eat for that long, including me.  She definitely had figured out exactly what she needed to do to fill her little tummy, and we could hear that she was filling her tummy when they listened to it with a stethoscope in recovery.

'
And as for me? I was feeling pretty amazing. 

I thought it was just a really easy C-section. 

I realized today that it had more to do with the morphine that they put in my epidural, that carried me through yesterday.  It made walking super easy.  I could do just about anything for twenty-four hours, when it wore off and I felt like a truck had hit me. 

This, obviously, is before the morphine in the epidural wore off.  Way, way before.
And that is the story of how Mary-Therese was welcomed into the world. 


 So far she prefers nursing to everything else, and her second favorite thing is being held, all day and all night if that's at all possible.  And it mostly has been.

After sleeping roughly four hours in the past 60 hours... I'm hoping to get a little bit more sleep tonight.  Although I have a feeling our little Tessie has different plans! 



Wednesday, June 29, 2016

She's Here!

This morning at 8:58 am we welcomed the newest member of our family. 

Mary-Therese Philomena weighed in at 8 lbs 12 ounces and 21 inches, making her the second smallest of the Wollner babies (James is the smallest). 

Sadie was relieved, because she really didn't want anyone to break her record as the heaviest and longest of the babies (9 lbs 4 ounces and 22 inches). 

Mary-Therese, who Patch is calling Tessie (and who can resist a Patch nickname?), immediately caught on to the whole nursing thing, and spent roughly  3 hours and 50 minutes of the first four hours of her life nursing non-stop.  We were all kind of amazed.  She was definitely the first of our babies to spend the entire time in the OR nursing after she was weighed. 

I'll write a post later that tells the whole story of our day, but overall I will say that this was the most relaxing and pleasant of our baby birth days. 

So without further ado, here's one of the first pictures of Tessie.  We haven't quite figured out which of the babies we think that she looks like!