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.
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.
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."
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.
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).
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.
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'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.