Ink Slingers Mary S. Series Special Needs Connection

I’m (not enough of) a Special Needs Mom

I’m a “Special Needs Mom”.

That sounds really weird to me. For a couple reasons really, but mainly because I sometimes wonder if I “qualify.”

My son is on the Autism spectrum, but is pretty high functioning (like what they used to separate out as Aspergers). With only a small interaction with him, you may not notice anything too odd about him, though those who spend more time with him can pretty readily tell he’s not typical. He gets some services from the public school district, and both at home and at his school there are some things we do differently to help him. But then I look at some of my friends who are also “Special Needs Moms.”

Sue (names are made up, but these are all people I know and call my friends) has a son who is severely autistic – his needs affect basically every part of the family’s life and decisions, and he will always need a caretaker of some sort. Karen’s daughter has hydrocephalus and at age five has had about 20 surgeries, including some pretty major brain surgeries, and struggles with many things that a typical five year old would do without even thinking. It’s hard to tell what she will and won’t be able to do in her life, but again her needs affect so much of her family’s day-to-day activities and decisions. Maura’s daughter struggles with severe anxiety – many daily activities like walking into the school building, eating anywhere but at home, and such things absolutely terrify her. The whole family does many things every day to help this daughter handle some of the simplest activities, and Maura is constantly looking for ways to ease her daughter’s anxiety and keep it from negatively affecting her other kids too much. And Jane has adopted or is fostering several children, including some with severe medical needs. She has had to become very comfortable with feeding tubes, specialty wheelchairs, and a number of other specialty devices and activities most of us wouldn’t have the first clue how to handle. One of her young sons (I think he was about five) recently passed away due to his medical difficulties.

Me? I have to deal with an occasional meeting with teachers and other folks caring for my son. I have to learn to adjust my discipline and teaching to suit what works best for him, and remind him to do things like responding to a friend who says hi. My other kids sometimes have to wait a couple minutes while we deal with his unusual behavior. Is it difficult? Yes, at times, but I’m sure he’ll be able to be independent as an adult, I don’t deal with much in the way of medical interventions (counseling and such occasionally, but not anything more), and I know his life is not at risk from his special needs.

Calling Sue, Karen, Maura, and Jane Special Needs Moms is a little bit of a “well duh!” Putting myself in the same category of Special Needs Mom almost makes me feel like an impostor, or like a kid dressing up in her mom’s clothes.

On the other hand, in my head I know I shouldn’t compare myself or my kid to others. And on the third hand (lol 🙂 ), I’m not a fan of labeling in general, or at least “embracing” labels as a way of defining yourself. And, I mean, it’s more than a little ridiculous to feel inadequate somehow because you’re not in as tough a situation as someone else. But knowing something and feeling it, whether you use the label or not, are very different matters. And, frankly, labels can be helpful in finding the help and resources you need.

So, am I the only one who feels this way? Do you? Or are you on the other end of it, and wish you weren’t reminded of your family’s special needs so often? How do you deal with it, or think about it??

Faith Formation Ink Slingers Mary S. Parenting Special Needs Connection Vocations

Grieving for my special needs child

For a while, it has bugged me when a pregnant woman, when asked if she wanted a boy or girl, responded “I don’t care, as long as it’s healthy.” Because I had seen couples welcome babies who were definitely not “healthy”, but of course they still loved their child with all their hearts. So in my self-righteousness, I looked down on those who answered “as long as it’s healthy”. Until I had been a mother myself for several years. My first two children had both been born healthy and “perfect”, and were even relatively easy babies. But then as my son grew, we saw signs of problems. He had a speech delay, which we found was due to a hearing issue (later corrected with ear tubes), but there were other issues which seemed to point towards something more. Over time, it became clear that he is on the Autism spectrum. He’s pretty high-functioning, so while it is sometimes difficult, our lives are still pretty normal. And for a while, this actually increased my self-righteousness, since I had a child who while physically healthy, was not your typically “perfect, healthy child,” yet of course I loved him! I must be so much better than those people who replied that they only wanted a healthy child.

But then I realized that I was not all sunshine and happiness when thinking about my son. I frequently felt sad, stressed, guilty, worried, frustrated, overwhelmed, and so much more. And somehow humility struck me, because I found myself grieving for the loss of some of what I had imagined for my child. I realized I was sad that he was already having great difficulty learning to read and having trouble with his classmates because of his difficulty in social interactions. And I was sad because I knew those difficulties would continue, and others would come. And I realized without even being aware of it that I had imagined my children would be healthy, normal kids and grow into healthy, normal adults. While I was feeling superior to those who voiced the hope for a healthy child, without realizing it I had simply assumed that my own children would be healthy. And it hurt to give up that assumption, to change my image of what my kids would be as teens and young adults and parents themselves. I had to realize that not only would they all face the typical challenges of life, but my son would also face special challenges. And my husband and I would face special challenges in raising him.

And that kinda sucks.

I don’t want to spend time searching for ways to help him navigate a world that sometimes doesn’t make sense to him. I don’t want to deal with Special Ed providers at his school, or with the additional parent-teacher meetings needed to keep track of where he needs extra help, or with the extra time at home helping him. I don’t like having conversations with him where I have to explain basic social reactions when he just doesn’t understand why his classmates react a certain way. I don’t want to be a “special needs mom,” but I am. I wouldn’t choose any of those things, but I do them because I know he needs them, and I’m his mother. I have friends who deal with much greater issues with their children, and I’m willing to bet they don’t want to be a “special needs mom” either. I think any mother would prefer that her child not have to face the big or small challenges that come with having special needs. A mother naturally wants to make the road smooth and easy for her children, to watch them grow and succeed rather than stumble and struggle.

So I’m sad sometimes. I grieve the loss of the image of a normal, healthy life for my son, and I grieve the fact that his extra needs make my job harder. While I certainly love him no less, part of my mind says “I wish he were healthy,” “I wish we didn’t have to fight to get closer to normal,” “this stuff is a pain in the….uh….rear.” And that’s okay. While I still don’t like it, I don’t judge them so harshly when new parents say “as long as the baby is healthy.” And I don’t come down so hard on myself when I am sad that we have to deal with this. It is a loss. A loss of some of my hopes for my child and myself, a loss of our time and effort and energy, a loss of the ability to share my time and attention more evenly among my children. I’m allowed to grieve for the difficulties my son will face. And so are you.

I’d love to hear how having a child with special needs has impacted your family. Have you grieved the loss it includes, as I have found myself doing? Have you felt guilty about that sadness, as I frequently do? Share your stories in the comments section.

Ink Slingers Mary S. You Did It To Me

You did it to me: Visit the Prisoner

Welcome to the series “You did it to me” where we will be discussing the Spiritual and Corporal Works of Mercy. This will be a twice a month series from March to September 2015. We hope you enjoy!

11021044_1457331471223989_325798669104677386_nA day after I agreed to write about this topic, I thought about it for a minute and part of my brain went “wait, what did I sign up for?!? What am I going to write about?” The closest I’ve ever come to visiting someone in prison was when I toured the local police station with my Moms club and got a picture of my two kids chilling with some friends in the cell there. My husband and I have talked about someone we know who regularly does prison ministry, but have never really considered doing it ourselves. So as I considered what to write, it was from a position of essentially zero experience or knowledge about actually visiting prisoners.

(yes, I know there are other ways of interpreting “the imprisoned” as meaning those imprisoned at home by infirmity, in their own minds by mental illness, or in a poor situation of life, for example. I also know that, depending on where you find a list of the Works of Mercy, sometimes this one is listed as “Free the Captives,” including the image made for this post by our awesome graphics gal! But I’ve always learned it as “Visit the Imprisoned”, and wanted to approach it from a more literal viewpoint of actual prisoners. Disclaimer over.)

I don't think this visit qualifies me to pontificate about visiting prisoners!!
I don’t think this visit qualifies me to pontificate about visiting prisoners!!

But then one day, right in the middle of Mass (far from pondering this post, I was focused on the fact my nephew was about to receive his First Communion!), some thoughts and ideas just hit me, and I admit I grabbed pen and paper from my purse and jotted down a few thoughts during the homily.

As I mentioned, my husband and I have discussed prison ministry several times, and most of the time our conversation only serves to illustrate the two main approaches to the imprisoned. The interior conflict I feel when I consider helping with prison ministry is really a struggle between these two “sides”:

  1. the very human urge to decide that these people did something terrible to deserve being placed in prison, and it doesn’t serve Justice well to seek them out to minister to, making their sentence even that small bit easier to bear. Especially when there are others in difficult situations, pointedly not due to their own actions and choices, who seem like much more worthy subjects of my concern and assistance.

  2. The knowledge that Christ would have given his life for even the basest of criminals, in hopes that that person would one day be in Heaven. God’s mercy overflows, and the whole point of mercy is that it is something we don’t deserve. Even when someone has made terrible choices and hurt others, the fact that Christ loves them enough to lay down his very life for them ought to move me to be willing to lay down our desire for Justice and even vengeance, and minister to these souls. And I do want to be a pathway for His mercy to reach anyone and everyone.

It can be so difficult to balance Justice and Mercy, especially when we read stories of people who were given a merciful early release from prison who then went on to hurt more people and land back in prison. Or when we see some people who are strongly called to prison ministry seeming to argue that if an individual repents and turns his life over to God, that perhaps his civil penalties ought to be lessened. It is natural to want a full and tough punishment (or vengeance) for the perpetrator when we hear about horrible crimes against children or the defenseless, and it is so difficult to get past that to the point of being able to offer them even the tiny mercies of a kind word or a smile, let alone the great graces and mercy God offers us all.

I could quote bible verses about vengeance being God’s, or about his Justice and Mercy. I could cite passage from the Catechism about how prisoners should be treated, or the value of every human being. Several ideas such as those came to me that day in Church, and I had several possible posts half-written in my head to choose from. But the final thought that hit me that day erased them all. Because I realized I had been lost. And not lost in any major way, but simply at a loss as to what to write for a blog post. Not exactly earth-shaking, and I had volunteered for it, after all. But God cared. He cared that I was afraid of looking foolish, and he helped me see several ways to intelligently and thoughtfully approach the topic.

He had Mercy on me.

And while I intellectually realize it is a tiny action of Mercy compared to the fact that he offers forgiveness for all my sinfs and eternal Joy in Heaven, this tiny Mercy was easier to wrap my brain around. And it dawned on me that visiting a prisoner was a similarly tiny act of Mercy. Prison ministry doesn’t require a laying down of my life, but perhaps only a few hours of time and a willingness to simply be a conduit for God’s love. It doesn’t mean breaking out that murderer or drug dealer or convincing myself or others that they are good men, but offering them the knowledge of the amazing invitation God offers to each of us, to be His. Helping them to find that greater freedom that God wants for every one of us.11008560_1457331431223993_4168276712896781398_n

How selfish of me to keep that to myself when we have been given so much Mercy, even to cover such minor needs as what to write in a post. While it is human to want Justice and punishment, God’s grace and Mercy can and should flow through us to others, regardless of whether we believe a person deserves even a kind word. And as the Spiritual and Corporal Works of Mercy are really all about sharing God’s Mercy with our fellow man (even though none of us deserve it), we must strive to offer that Mercy most especially with those who least deserve it.

Will I be joining the prison ministry in our area?? Probably not. I have other ministries that I feel much more called to. But I am much more open to it now, and have added prisoners and prison ministers to my daily prayer list. Even if it is only in context of a discussion with a friend or loved one, it always helps me to realize that I deserve death for my sin, but have received God’s Mercy. And that now I have a responsibility to offer that same Mercy to others.

What about you? Have you ever visited (or freed!) a prisoner?? What was it like? Do you agree with my thoughts on it??

Series You Did It To Me

You Did It To Me: Admonish the Sinner

Welcome to the series “You did it to me” where we will be discussing the Spiritual and Corporal Works of Mercy. This will be a twice a month series from March to September 2015. We hope you enjoy!works of mercy series pic

Judge not, that you be not judged. Matthew 7:1

I think pretty much everyone has heard some reference to this scripture, or at least the sentiment of not being “judgmental” of others. Tolerance and avoidance of being judgmental seem to be almost a religion in and of themselves these days. But what about this verse:

My brethren, if any one among you wanders from the truth and some one brings him back, let him know that whoever brings back a sinner from the error of his way will save his soul from death and will cover a multitude of sins. James 5:19-20

Or this:

Take heed to yourselves; if your brother sins, rebuke him, and if he repents, forgive him; Luke 17:3

Ummmmmm, wait a second! I thought we weren’t supposed to judge each other!! And apparently it’s a “Spiritual act of Mercy” to tell someone they’re wrong?!?! While I could definitely get on board with the idea of telling people they’re wrong, don’t these verses contradict each other?? How can both ideas – “judge not” and “rebuke those who sin” – be correct??

Admonish sinnerThough it may not seem like it at first glance, they are actually on the same page. And yes, they’re both right. Let’s look at a “real-life-ish”, if not exactly realistic, example: Imagine you are driving on a one-way road, and see someone going the wrong way. Do you say to yourself that maybe that’s the “right way for them” and that you don’t want to be judgemental about their choices by saying they’re going the wrong way?? Or do you get their attention and let them know they’re going the wrong way?? You know there is danger in going the wrong way on the road; people could get hurt or even killed. So even if it’s a honk and a quick gesture, your actions are pretty clearly a merciful act, as you are acting to prevent the other driver from horrible consequences.

Okay, you say, I get how that shows the mercy side of it, but what about the “judge not” part??

Well, let’s look at what you’re doing in our example. Are you deciding that this driver is a total nincompoop who shouldn’t have a license to drive and should stick to walking and far away from public roads?? Well, maybe you are, but let’s say you took the other option and you have judged that this person’s actions (going the wrong way on a one-way road) are dangerous to them and others, without extending that judgment to their entire worth as a person and as a driver, and without neglecting your own faults (double-check that you’re going the right direction before honking that horn!). That is what we are called to do, to judge the actions of our brothers and sisters, while remembering that it is never our responsibility or right to judge their worth as a person or the direction their soul is headed after death. Only God can see our heart and properly judge our soul. So we, as imperfect humans, are told not to judge another’s soul but to stick to the things we can see and know: the outward signs, words, and actions of others, and to wisely warn those whose actions show they are headed the wrong direction. Not for the purpose of telling them how bad they are, but just as in the example above, to try to prevent their actions from causing pain and hurt.

Now that all that confusion is cleared up, we come to the hard part, how do we go about telling someone they’re “driving the wrong way” in their sins??

I’m a total pro at this. I build a relationship with the person, then gently broach the subject at a relaxed moment and calmly discuss it with no hesitation, in straightforward and loving terms, and my “admonishment” is always received with appreciation and the realization that I am right.

Oh wait, that’s just how it goes in my head.

In real life, the few times I’ve gathered the nerve to approach such a conversation, I tend to say “um” more than actual words, and twist myself in knots trying not to offend the person, so much so that oftentimes the point is lost. And when the point is understood, frequently the person still takes offense and either respond defensively about their actions or lashes out and attacks me for presuming to tell them they’re wrong. In real life, I’m a rank amateur when it comes to “admonishing the sinner”. So why should you listen to me?? Well, honestly, you shouldn’t. In fact, I’d love to hear your thoughts on how to do it!! Truly, don’t listen to me, but do listen to St. Paul:

Brethren, if a man is overtaken in any trespass, you who are spiritual should restore him in a spirit of gentleness. Look to yourself, lest you too be tempted. Galatians 6:1

Or perhaps even more directly from the source, these lines from Jesus:

Or how can you say to your brother, `Let me take the speck out of your eye,’ when there is the log in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your brother’s eye. Matthew 7:4-5

Do not judge by appearances, but judge with right judgment. John 7:24

What I take from these and other references to fraternal correction is that a few items are most important: gentleness/love, not being a hypocrite, and “judging rightly”. Being gentle and loving is easy to understand – being considerate of the needs and feelings of the person you’re talking to, while at the same time knowing that admonishing sinful behavior, in a way the recipient can truly hear and respond well to the admonishment, is truly an act of love. As for being a hypocrite, that means we don’t rail against sins we aren’t even tempted towards while ignoring our own temptations and failings. It means we acknowledge our own sinfulness before approaching our brother or sister about theirs. Finally, “judging rightly”. While we obviously can’t look into our friends’ or families’ heart to see the full truth of the matter, we can look with as much wisdom as we can at the information we do have (that we know to be true!) and make our judgment only from that, not our assumptions about what is happening.

Oh, and from my own experience, the most important key to the success of the whole thing is prayer and reliance on the Holy Spirit to guide you!

Won’t you join me in trying to lovingly warn those that we see are headed the wrong direction?? I promise I will try to practice this skill outside of my rosy mental image of myself!! What response have you received when you’ve reproved those you love who have sinned??

Ink Slingers Mary S.

Loving my Cross (Even When I Hate It)

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In many ways, I have had a wonderful life; blessings surround me. I was born to a strong, faithful, and loving Catholic family. I was raised be thoughtful, fair, and loving. I received an excellent education, never went hungry, or wanted for anything I needed, including love and affection in my family. I’m now married to a wonderful man, have two great kids, and a third growing within me. My life hasn’t been perfect, but it hasn’t included the challenges that break my heart to see others struggle with, such as hunger, homelessness, abuse, lack of love, or a lack of faith.

And yet…as a teen, I attempted to end my life twice.

I thank God I was unsuccessful, but I still sometimes have suicidal thoughts. For many years, I cut myself in a terribly unhealthy attempt to cope with severe depression. Even now, I can feel the urge to do that again, despite knowing how destructive it is. Many days, I just can’t see the blessings in my life or believe they’re real. I’ve never been able to see the good in myself that others see, and am constantly amazed when people want to be around me. While I understand that these are the results of an illness–depression–and this is something I’ve struggled with since a small child, it’s purely an intellectual understanding. It’s similar to how someone can understand the physics of flight from a book, but the book can’t teach them what it is like to float free on the breeze with the air rushing past and the ground flying by below. In many ways, I have to trust my “book understanding” of myself as a good and worthy person, in spite of my “gut understanding” of myself as the opposite.

Earlier this week, a man who raised our spirits and made us laugh for many years chose to take his own life, based on a similarly twisted view of himself and the world. I’ve seen and read countless articles this week about what depression is, how it affects a person, and how we should view it as a real illness, as well as many debates about depression and mental illness in general. This has all prompted me to finally write about this topic, since it is weighing so heavily on people’s hearts.

But what can I say about depression that hasn’t already been said?  What can I add that’s useful and good? What does God keep pushing me to write about this subject? I think he is pushing me to share my own experience of depression as a cross in my life. I’m know I’m not the only person who carries this burden, or the only one who views it as a cross, but I pray that this will touch someone’s heart and be what that person needs to hear.

There are many biblical references to our crosses, such as Jesus telling us in Matthew 16:24 that, “Whoever wishes to come after me must deny himself, take up his cross, and follow me.”

And you know what?? That SUCKS.

I hate that following Jesus means I’ll have to willingly take on pain and sadness, as well as the hatred and doubt of others, and that every day and night I must embrace this heavy, painful load that keeps me from ever truly being comfortable. That’s not what anyone wants, especially when there are voices everywhere telling you how Jesus is really just about love, tolerance, and warm fuzzies. But I’m betting Jesus didn’t want be whipped and spat on; I’m sure he would rather have been comfortable and happy instead of hefting a massive beam of wood on his split and bloody back, climbing a hill while surrounded by both helpers and haters. I’m sure it was torturous to allow his hands and feet to be pierced with spikes as he also heard voices taunting him to prove he was God by rising off the cross in safety.

Yet Jesus ignored his tempters and embraced his cross, along with the tears, sweat, blood, and heartbreak that came with it. Every time I hear the Passion story, I tear up when Jesus–God himself–cries out “My God, My God, why have you forsaken me?” Even knowing the glorious end of his story, it was all he could do to take up his cross and accept everything that came with it.

loving my crossWell, excuse me, but I DON’T WANT TO DO THAT! If even our Lord felt forsaken as he endured his cross, what hope do I have? And why would he tell us that we must pick up our own crosses to follow him? Why would a God who loves us ask us to endure such pain?

Honestly, I have no idea. I’m sure there are excellent theological explanations about why Jesus told us to take up our crosses, but knowing the intellectual reasons for suffering doesn’t matter on a day-to-day basis. Why do I get up each day and heft my cross on my back and keep walking, even when everything in me is screaming to stop because it’s too hard? When so few even see the cross, or so many tempt me to put it aside?

Because my cross is His cross. My Lord is there with with me carrying the weight, and when I put my shoulder to the weight, I put my arm around my Savior.

Sometimes I fall under the weight, but I know Jesus is right there with me when I do. I reach out and clutch him like a drowning person clutches a life preserver. Without that cross, I wonder if I would stay as close to him. If I didn’t need his help with every step, would I wander farther from his side? And when troubles hit unexpectedly, how could my “life preserver” even be within reach if I had left him behind?

I know the answers to those questions too well. Which is why I truly embrace and love my cross. It keeps me close to the One, to the person who saves me. And I know that when I try to struggle alone and refuse His help, I’m simply not strong enough. I have been nearly crushed by the weight too many times before I humbly reach for His hand. (Apparently, I’m a slow learner, because I keep trying to prove I can do it alone.)

I don’t know why God allowed me to have the cross of depression and other challenges in my life. I’ve been blessed to see some small good come from my suffering, but most of the time, I can only trust that He has a reason for asking what he does of me. I can’t make sense of it in this world, but he has given me reason enough to trust him so I work every day to take up my cross and follow him. That is all any of us can do.

So tell me: Do you love your cross? Or do you need to hold tighter to it, so that you might hold tighter to the One who asked you to carry it?


Image Credit woman silhouette: Free Apple Wallpaper
Image credit cross: Flickr