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.

25 comments:

  1. Ah, this made me cry. I loved that you kept listening--to your mommas heart, your husband and your Father. The answers will always come, we just have to be willing to say, "Oh, that's not what I thought this answer would look like." And then offer prayers of thanksgiving.

    ReplyDelete
  2. Good for you! No school is perfect, but I think the girls will love it. No one can be everything to their kids, and it's goodfor them to learn to navigate different environments. You have a lot going on, which is an understatement. You just focus on loving and caring for these little ones, and caring for yourself a bit so that you have the reserves a mom needs. I am gladyou found a welcoming parish!

    ReplyDelete
  3. I've been a silent reader on your blog for a while now. I've never felt like a voyeur, imposing on your family (though perhaps that could be alleged), but have felt so thankful for the tiny window into a family so different than my own. And yet, and yet still a family. A happy and good one, in the image of our maker. Thank you for this post, and my heart aches for your struggles with your previous parish. Though I am SO thankful you have found some relief from the isolation born of ignorance. Praise God you are where you are, and know that you (all) are in my prayers! I pray you'll be able to forgive those who know not what they do. You are a strong and courageous woman whom I admire and strive to model myself after. Congratulations on beautiful baby Tessie (I can feel my baby fever creeping up just looking at her!!)!
    In His love,
    Alexandria

    ReplyDelete
  4. I'm sorry this happened, and I'm excited for you this year. Keep us updated on these big changes!

    ReplyDelete
  5. All of us, all our lives, suffer rejection and judgement of some sort, fair or not, from all kinds of people. Sure, we're insulted and hurt, and momma's feel the hurt for their kids. Sure, your expectations are that people of faith should be able to rise above their own experiences, and be inclusive no matter what. Sure, you would have loved for the school to be what you wanted them to be. But they weren't.

    I know when I was growing up I was angry when the other kids made fun of or rejected a kid because they were homely, or awkward, or even slow witted (as they called it then). No one in our family exhibited any kind of learning or behavioral anomalies, but somehow I learned in my family everyone is a person who deserves respect regardless of their strengths or weaknesses. The only way I learned this was by the kindness my parents showed to those who were different or weird. They were unfailing in this.

    I was watching a T.V. show recently about kids who need surgery for physical deformities, like cleft lips. A doctor said something I found very profound: he said some parents see their kids with the physical deformity as imperfect, broken, and when they get "fixed" the parent believes that finally all will be well and they will begin to live the life they were meant to have. They expect the surgery will fix problems not caused by the surgery. Other parents see their child as wonderful as they are, and almost like the deformity doesn't even exist, and when it is fixed by surgery, they have a bit of trouble, as if they want the child to be as they were since that is the image of the child they love.

    That struck me as profound because some people have hearts that think everyone is unique and different, and so having ADHD is just the same kind of difference as being adept at musical instruments, or able to jump really high. It's just a difference, not good or bad (maybe even good in some situations). Other people see differences as useful for grading and categorizing and qualifying…and rejecting.
    You have the kids God gave you, for a reason. Maybe it's not to be some kind of activist and advocate for disabled kids, but maybe it's to be for them what the world won't be, showing them unconditional love, so they grow up knowing what they are is perfectly okay, showing kindness and love to everyone, even the people who offend, and especially to the ostracized and outsiders. And being happy. That's probably the greatest gift you can give to your kids.
    I'm glad you wrote this post, but some of the difficulty, I would guess, as you point out, is that you are carrying a lot, and are stretched thin, and sometimes years of that can wear down even our strongest resolve and confidence. I hope you have friends you can confide in, who can help when the crosses you face, the things that really challenge your Faith, come against you. Often it’s not what we prepare for that attacks us. It’s what we could never have imagined we would have to deal with. But I know God has a reason and purpose for all of this, and will give you the strength and grace to overcome it, that is, of course, if you surrender it all to Him.

    God bless you and your beautiful family. ~ Bonnie

    ReplyDelete
  6. Oh, I wanted to comment too about Sadie crying. It was an "incident????" What the heck is THAT? As a child I cried at the drop of a hat! I cried ALL THE TIME FOR EVERYTHING THAT WENT WRONG, so much so, my mom would sometimes lose patience and just roll her eyes and walk away. I would weep like the world was coming to an end over the smallest things. I know if I had been Sadie and didn't get picked, I would have cried too. How is crying, for a girl, an "incident?"

    What sort of anomaly or character flaw or disability does crying imply? That you're weak, or lack confidence, or maybe mentally ill? The latitude of normal, acceptable behavior really seems to have narrowed since I was a kid.

    Man, I thought the world was a rough place when I was a kid. Nowadays you can't even be human...

    :-) ~ Bonnie

    ReplyDelete
  7. Good for you! Stay the course with school - there is an adjustment period going from homeschool to regular school. You go from being your child's entire world, and having total control, to letting a chunk of that go. But switching to traditional school (despite the scorn from my die-hard homeschooling friends!) was really the best choice we ever made. Hey, I had a little free time! Hey, my kids made friends and learned to cope with all sorts of difficulties on their own! Hey, our world expanded and the kids had other trusted adults in their lives to look up to as role models. We made family friends at the school, and we socialized with them! No, we didn't like everyone. No, not every teacher is amazing. That's life. I am so glad to see you giving yourself the grace and permission to make the choices that fit your life NOW. You have more on your plate than most; asking for help, sharing the load is what makes us the family of God, brothers and sisters in this journey called life. Not a fan of Hilary, but indeed, it does take a village to properly raise children. We need those doctors, teachers, nurses, librarians, mothers, fathers, grandparents, cousins, friends, and shopkeepers to keep our families strong. God bless you on this chapter in your life. You can do it!

    ReplyDelete
  8. ((HUGS)) I'm SO glad you found a school for Sadie, some kids thrive in school environment. :) Your post really struck a nerve. A few years ago, when my daughter was in the 7th grade, we switched her to homeschooling for a number of reasons. She is super nice girl, loyal and SO much wanted to make friends, and I read about a Catholic homeschooling group. A large group, active message board, moms clearly stating all are welcome to come and join, told me how their daughters would be happy to welcome my daughter. And so we showed up to two events. The first was a Mass, and no one spoke to her but ok, it was Mass. But the second was a big activity to go to a local wetlands area, tour around outside on a long wilderness trail. They broke the kids up by grades, and there were SIX other girls, one boy in her grade. Not ONE SINGLE GIRL spoke to my daughter. NOT ONE, the entire time of over two hours. Not on the tour, not in the time afterwards at the playground. The other parent in that small group, the boy's Dad, tried to say it was ok, they take awhile to welcome new kids, those girls had known each other for year's etc, then said it would be a year or so before my daughter began to not feel like such an outsider. I was floored - this from a Catholic group that claimed to welcome others, but I guess because my daughter wasn't the perfect 5' 3" cheerleader type she was most definitely NOT welcomed. Half way through the walk I had tears in my eyes at how hurt my daughter was by their treatment. I relayed my experience to a couple of other moms (not in that group) and both commented that Catholic groups could be quite snotty and not very welcoming. Wow... how very sad. We never went back, needless to say.

    ReplyDelete
    Replies
    1. Parents need to teach their children to make a concerted EFFORT to befriend new girls. It isn't rocket science. I dislike that excuses are made for cliques being accepted. Cliques are often the source of bullying behaviors, and should be evaluated carefully and the individual girls nurtured into being individuals hanging out together rather than a small mob where individuality is punished by the group. I feel sad for those girls who missed out on making a good new friend because the adults were too narrow sighted to understand that they needed to step in and teach each girl to go, do, welcome, and befriend each new girl from the first day. I am sorry your daughter had that bad experience. My older girl had that from a Catholic school. I ended up moving her to the public school. My youngest has experienced that already as in K! As a home school kid in a troop with Catholic school kids, she was shut out and even mocked a bit. She tried and tried to make friends. I pulled her out. The new troop is full of girls who hug and love on each other and play together so sweetly-- and they do welcome each new girl as a long lost new friend. Our goal as adult leaders is to encourage that openness to continue. I pray we succeed!

      Delete
  9. This post made my cry, made me angry, and then made me joyful.

    As a former Catholic school board member and president, I wanted to throttle that awful excuse for an administrator. Please print out this post and send it to him - and the pastor of that unwelcoming, self-absorbed parish/school - with a brief note of explanation. They absolutely NEED to read it. I'd also consider sending it to the new school principal/administrator with a note of thanks.

    I am so happy that Sadie has found a school that isn't focused on only children who can be "100% successful", but accept her for the wonderful, unique girl that she is. God bless all of you.

    Marie

    ReplyDelete
    Replies
    1. Just a reminder that we oughtn't judge unless we know the entire story. Your desire to "throttle that awful excuse for an administrator" without knowing him or her is rather rash, don't you think? Cammie has reported her side of the exchange, and it sounds bad enough, I'll admit. But don't rush to judgment. Most Catholic school administrators are trying to do their best for each students and the entire school. Peace.

      Delete
    2. Anonymous, I've followed Cammie long enough to trust what she writes, and have enough experience with Catholic schools over decades to realize that that administrator's attitude leaves a lot to be desired. (Sadly, Catholic schools have gotten a reputation for picking and choosing students, often - but not always - due to budget constraints.)

      Certainly most Catholic schools and administrators are trying to do their best; this one, sadly, exhibited what I regard as a narrow-minded exclusivity that does none of us - a child like Sadie, the school family, the parish, the Church as a whole - any favors.

      God bless.

      Marie

      Delete
  10. Oh Cammie. Your experience at the first school is exactly what happened to us with our oldest child, who is highly gifted and has sensory processing disorder. They decided she had autism. We homeschool for now and she's wonderfully happy. But there may come a day when she wants to go to school and I worry what that might be like. I have to trust that like you have experienced, God will lead us to the right place.

    I've written about our experience a lot on my blog if you ever want to read and know you aren't alone. I'm so happy you've found a place that welcomes your family. I will pray for you.

    ReplyDelete
    Replies
    1. My little one was recently diagnosed with SPD, I would love to read your article but don't know the address.

      Delete
  11. I am so sorry you had this experience Cammie. Many prayers for your family as you navigate these changes.

    ReplyDelete
  12. My husband grew up in Lansing, and we lived there when we were first married, about ten years ago. I don't know for sure which church you started out at, although I have my suspicions, but I recognize the stained glass in the pictures of Tessie's baptism, and all other factors aside, I think you are going to love it there. My husband's family attends there, he and his siblings went to school there and we attended there as well. The community is marvelous, the facilities are top notch and I hope you will be happy. They are incredibly welcoming to families with small children, more so, I've heard from friends in the area, than many other parishes in town. I can think of half a dozen people I know who have switched to there because of feeling unwelcome at mass with their small children in other parishes and they have all been very happy. Good luck and I hope you love it!!

    ReplyDelete
  13. *prayers* I'm curious if the second school was not looking through the "labeling lens." In other words, were they presented with the same paperwork regarding Sadie's challenges? I'm not asking as a criticism, like, "you pulled the wool over their eyes," just wondering if perhaps they were not on the lookout for issues because she was presented without labels? There are so many behaviors, actions, etc of children that are not indicative of anything short of being a very young human person, but if the label goggles are on, we tend to think, "oh, she was obnoxious during coffee and doughnuts because she has x, y, or z." If we've never heard that Johnny has had a diagnosis of any sort, we're more likely to smile and say, "what a spirited little fellow!" In any case, I hope this year will be more simple, and simply beautiful for you and your family. TB

    ReplyDelete
    Replies
    1. That's true! Because she came back from the latest eval as not having any sort of disability we didn't start out by saying that they'd suspected she'd been on the spectrum. And I think what you said is totally true (although I don't think I'd given it much thought before this), that without knowing those labels a child is much more likely to be given a fair shot in a lot of situations.

      Delete
    2. Now THAT's interesting.

      If a condition truly exists, I would expect someone familiar with it sees it without any promptings. I remember long ago you wrote a post about Maggie getting diagnosed with autism. I remember you noted you knew about the things she did not do and other things she did that seemed unusual, but didn't make much of them, not having had any experience with the condition. But then your pediatrician began to suspect based on those things and suggested testing to confirm.

      I'm glad you spoke to them based only on her latest evaluation. Given how the other school reacted to your frank and open conversation, I can understand your caution and reticence.

      Hey, you might be surprised. This may be where God really wanted Sadie to be, and it might be a blessing in disguise!

      God bless. ~ Bonnie

      Delete
  14. Wow, I just came here to catch up on your blog and this post did exactly that! I am praying you have found a loving and accepting home in the new parish and school. Hang in there!

    ReplyDelete
  15. I'm so sorry this happened and glad you found another parish that was welcoming. Too often the welcoming church in these stories ends up being a non Catholic one.

    My teens attend our local Jesuit High School, and while it's a great school for them it bothers me to know that if they were struggling with a disability they wouldn't succeed there.

    My nephew with ADHD and CAPD had similar problems to yours at their parish preschool and was discouraged from applying to the better Catholic high schools. He has done and is doing well in the public schools.

    Some of the problem in the Catholic schools is lack of resources. That's our job to help with those funds, but unwelcoming people is not a money problem.

    I agree with sending this post to the pastor and administrator at the first school.

    Prayers for you all

    ReplyDelete
  16. As a mum of a boy who has a condition I can understand all this. Please let go and give it all to God. Long ago I prayed - 'God this is your son more than he is mine. If I as him earthly mum desire that he is healed and that his life gets better, I'm certain that you as the Creator can restore him completely - I'm sure that you can give him all his health and even lost time. Give me the patience to leave it in your hands until that moment happens. Do not let me focus on all the things that we have to do, because everything can fall into its place as your plan. Show me what I have to do according to your plan.' I send you and your family peace xx

    ReplyDelete
  17. Wow. I'm so sorry. It makes me so angry that you and Sadie were treated like that. I told my brother about your post - he reads your blog, sometimes, too - and he immediately pointed out that if they're not open to children with disabilities, especially children with as mild disabilities as Sadie has (I could *almost* understand if they had real reason to worry about her safety, or the like, but I didn't even know Sadie *had* any sort of special needs until I read this post), then it's probably good that they showed the rot before you sent Sadie there. As he said, a Catholic school that will not accept children with special needs is not Catholic.

    I think one of the many barriers to people being truly pro-life is that we're all so very used to everyone being "normal" - having systematically destroyed anyone who was not. The only reason Autism still exists in our country in the numbers it does is because nobody can test for it in the womb. How often do we see children with Downs, anymore? Even truly pro-life Catholics rarely actually see people with special needs. They are far rarer than they should be, and the ones we have are frequently shut away somewhere. I know, because as an EMT I actually encounter them, and I've seen how many with even very manageable disabilities are quietly disappeared into state care. I am a convert, and once I realized that I needed to be pro-life in my heart, not just in theory, I started looking at pictures of kids on Reece's Rainbow, trying to retrain my brain on what a child can look like, trying to open my heart to the people who are usually hidden from view. We don't even see them in church - or parish schools. The abortionists want this, I think. It's part of their vision of utopia - a world with no genetic disabilities, no unusually noisy children, no especially slow baggers at the super market. They want to forget about them, to pretend that abortion cures something, rather than simply destroying someone who did, in fact, exist. We need to not let them.

    Please, please do not be embarrassed about your children being different. Do not be afraid when Mae makes noise at church or in a restaurant. Your children are an absolute blessing, and the world desperately needs to see them and know that they exist. Especially the other children need to see them. I think one of the reasons I converted to being passionately pro-life, from having been raised pro-choice, was that I played as a child with a young man with Down's Syndrome. He was probably roughly 18, at the time, and was the best playmate a six-year-old could have. I knew he was different, and I didn't care. At all. Or well, I did care - he was pretty much the best thing since sliced bread. An adult who could play like a child. And later, as soon as I learned that my new Catholic faith meant that I needed to be pro-life, I remembered him.

    Finally, I agree with the other commenters that you need to report this to someone. Perhaps your pastor, perhaps the school, perhaps even your local bishop. Parochial schools should not be allowed to turn away kids like Sadie. If you're not pro life, you're not Catholic. Period.

    Hang in their, keep fighting. I'm sorry it's so hard. The Lord's work is rarely easy, and you might feel unsure but I am certain that that's exactly what you're doing. I will pray for you. - Anna

    ReplyDelete
  18. I rarely comment but wanted to offer my support as a fellow special needs mama. My husband and I have made the decision to send my daughter to a special needs school but we continue to homeschool our other two school age children and I also have a three year old and a baby on the way. I know that feeling of being stretched thin and just needing a bit of a break. Prayers that it all goes well this upcoming school year.

    ReplyDelete
  19. I am sorry for the bad experience, but like another person said, it is GOOD you saw the rot right off! The damage that sort of bigotry can do is just terrible and you were spared that! That it also resulted in your finding your way to a parish that is welcoming as all should be.

    We are starting an American Heritage Girls troop at our parish. Father asked, why here? And I told him that the moms, who were from several parishes, all agreed on which parish to ask first because it was the most family supportive. Then we had a second choice which was nearly as good, and then the other parishes where we did not feel we would find the welcome or support a start-up AHG needed. We've gotten such encouragement from our chartering parish! This fall is our first year. We are still scrambling, but God just sent us another person for our AHG Ministry Team and she is wonderful, I love her already and can hardly wait for her daughters to meet up with our other girls. Our troop board are all home school moms because that is where this whole process began, but we are scheduling our meetings after school so all the girls can join who wish to do so. My point is that some parishes are better for families than others.

    I hope your daughter has a marvelous time in school. Sometimes the classroom style is what is right for a particular child. I've seen families with kids in three different situations, two schools, and home school, and every summer they evaluated every child and determined their best next step, being it Catholic, other private, home or public schools. I did home school until life forced enrollment. It wasn't great for mine but then again, nothing was all that great during those difficult years. We survived. My younger are home schooled, and I prefer to keep on, but I also know that it might not be possible, so I try to keep an open mind. You do your best and what you decide will work out fine.

    Mom and Dad know best and can trust themselves to do it as right as possible in this confusing world.

    ReplyDelete

I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!