I’m not even sure what to call this post but here we go anyway…

So… a lot has happened. William turned 7th, Mother’s Day, the annual end of the school year madness has commenced…

A year ago I was throwing away and packing up a life I’d lived in a house I’d lived in for 11 1/2 years. Things were changing and I was rushing and I NEEDED people. I NEEDED sharing.

Twelve short months later, I’m still madly in love with the place we live and the lives we are living, but something is different. Like, I’m outlining a book I haven’t sold different and also internally different.

For me, time is always an issue. If I do this, I can’t do that and I really need to do both of those things. As a result, a lot of things in my life have suffered at various times: relationships, prayer life, the cleanliness of my home, my sanity, my health… We serve a wonderful God who truly gives us the exact right amount of time we need and that’s no small thing. It is an incredible gift that we far too often take for granted. Moreover we tend not to ask God in manners of how we use our time in every day things. We specifically do not tend to ask the third Person of the Holy Trinity, for guidance in this area (or any area for that matter..).

This seed started sprouting for me the weekend of Joseph’s First Holy Communion when I went to Confession and the priest told me I needed to stop doing (or trying to do) everything by myself. I needed to ask for God’s help in everything. I needed to stop thinking of myself as a superwoman and acknowledge my weakness and reliance on God.

As the weeks have gone by…I’ve actually struggled with this. I’ve prayed before the tough stuff, “God, I need your help, I can’t do this alone.” Sometimes I have felt like it was easier than others or helped more. Still, I struggled. I began to realize the Holy Spirit was nudging me to make some changes in my life not just in regards to prayer but also in areas of health and relationships and other areas.

Last week I decided that for Faith Formation class I would have my students learn about Pentecost followed by a tour of our parish’s memorial garden. It was a very vibrant discussion of who the person of the Holy Spirit is and how the Holy Spirit works in our lives. As a child I remember a lot of attention being paid to God the Father and God the Son in the various Faith Formation programs I was part of and I know for sure we mentioned the Holy Spirit in the Sign of the Cross but as far as an explanation of this Third Person, well, there was the image of a dove and that was about it.

Thursday morning it all came to a head. The “a-ha moment” came when I first logged into facebook and saw headlines about a certain man selling a certain gun and deaconesses. It hit me: I’m out. I spent the following two days off facebook fasting and briefly logged in a couple of times over the weekend.

The problem isn’t facebook. The problem is me. I wasn’t listening to the Holy Spirit. I wasn’t praying and asking the Third Person of the Holy Trinity to help guide me. Sunday morning, at Mass, I listened as our pastor described a family with three children where the parents only spoke to the youngest child once a year of his/her birthday. This. This is why I wasn’t catechized, nor were my parents, about the Holy Spirit, because it just gets pushed aside. As an adult, I’ve come to see the beauty that happens when the Holy Spirit forces itself in through whatever small opening I’ve given and how that grace shatters me and breaks me open to the possibility of how it is to truly live God’s will and walk in His light. But do I ask for the Holy Spirit’s guidance and advocacy in my life and decisions? No. Not like I should.

But that’s all changing. As I’ve read the first readings over the past few weeks, the story of the early church told in the Acts of the Apostles, I have been touched dramatically at what these men lived through. They were born as Jews, God’s chosen people, but that alone, they learned could not win them salvation. Distressing, for sure. They made the unpopular and non-sensical decision to follow this man named Jesus who just called out “Follow me!” to them as they went about their normal daily routines. They spent three years listening, learning, and teaching. Then He was arrested and crucified (only the worst punishment EVER) and placed in a tomb. If ever there was a time for a crisis in one’s soul, that HAD to be it. Then the body was gone and He began appearing to them. He spent 40 more days with them continuing to teach them but He was honest and told them He would leave them again and when that happened, He would send an advocate. Jesus said a lot to the disciples that didn’t make a lot of sense to them, I’m sure this was one of those things because although their faith had grown wider and fuller than they ever could have imagined, they were still human. That moment, the moment in the Upper Room when they heard the wind, it must have been terrifying. But the thing that strikes me most now, it wasn’t their birthright, nor their proximity to Jesus and hearing His word and seeing Him perform miracles that enabled them to start the Church…it was those plus the Holy Spirit that made it all happen. Without all three Persons, those of us who are Christians today, would not be. We understand Jesus’ teachings now because of the Holy Spirit.

For me, the Holy Spirit will not just hang there at the end of the Sign of the Cross and the Creed. I will seek the Holy Spirit the way it has sought me over the past few years. I will actively pursue it in prayer. I will realize that no, I cannot do it all alone, and that means asking God, Father, Son AND Holy Spirit to help me. To guide me. To carry me. The Holy Spirit chose me again and again when I allowed myself to be broken open by grace. Now I choose it along with the Father and the Son and trust it to lead me to this better use of my time and talents. To help me become the person God intended me to be.

Come Holy Spirit, fill up my life, guide me to the paths that are true.


Entitlement and Charity

So, I’m sure most everyone has seen and used the facebook feature “on this day” as well as “timehop.” Somedays I remember what will come up, like my kids’ birthdays, my anniversary and even some secular stuff.

Today I saw a link where I commented:

I get that this is the wish her son had, but I totally think Make-a-Wish has a valid point. They don’t want their name associated with just anything. At this point, I think her best option is to contact Comedy Central and see if they’d be willing to facilitate anything. And have her kid pick a different wish!

The story here is what I was referencing. In short, the woman’s sixteen-year-old son was selected by the Make-a-Wish foundation and his wish to meet the creator’s of Comedy Central’s show South Park, Matt Stone and Trey Parker. His wish was denied by the organization because of the content of the show in question.

The comments on the thread mostly said, hey, I get that he’s disappointed but Make-a-Wish is within its rights in restricting wishes in this way. Many also advise her to contact Comedy Central or to start a petition or use social media to attempt to contact the men in question themselves. The mom shot back at one commenter who was supportive of MAW’s decision saying that they granted wishes for adults, so why couldn’t they grant this? The granting of wishes for adults is actually not a practice of MAW. I want to believe this woman is confused because the website states that the age limit for the organization is 18. Regardless, there were many alternatives given and several people (including one whose child was denied for being too young and then tragically died days after her birthday) who urged her not to launch a campaign against what is a good organization.

A few brave souls also dared to ask the mother why she felt her son was entitled to any wish, even if he did have cancer? After all, deserving kids are denied wishes all the time and some die before they can receive their wish and a few the organization cannot make come true for various reasons.

As part of the special needs community, I’ve witnessed this form of entitlement vs gratitude with parents when dealing with charitable organizations. “Well my child has [insert syndrome or disorder] so he deserves this!?” This even happens with things denied children without special needs routinely. It is disgustingly competitive, especially when dealing with autism, because there are so many children and so little time and funding.

An organization near and dear to our hearts, Surfers Healing, recently announced a huge change to their camp sign-ups. Before the method was, as Edna Mode from The Incredibles would say, a, “Luck favors the prepared” method. Meaning sign-ups took place on a certain date at a certain time and parents would set multiple alarms and be refreshing the website for an hour before sign on time and then once the link opened type as fast as their fingers would go. Camps were filled in less than 10 minutes. For the past several years, we have gotten in every time.

This year the method is by lottery. Parents have a full week to get their child’s information in online and then a computer system selects randomly the required number of participants (with a certain percentage being first-timers) and puts the rest of the registrants on wait-list. And registration for multiple camps “just in case” the child gets into one is no longer highly discouraged but outright banned. Parents of kids who have never participated are in high praise of this system. Those who have in the past admit it is fair but there is a rumble of anxiety and upset as some of them fear telling their child with autism that this year they won’t get to surf. We’ve decided we won’t attend if we don’t get in as Shelby will not understand why we are there if she is not surfing. It’s no ill will, it’s just making life easier for her.

I am waiting more anxiously to see how parents react to the lottery system. In all honesty, fair is fair and this is the way it probably should have been done from the beginning. I am curious, however, to see the reactions not only of parents of old-timers, like me, whose children do not get in but also of parents who could not get their child in previous years and for whom the lottery doesn’t work first time out of the gate. Will they still feel it’s a fair system when, in the ends, it treats them the same way the old one does? Statisically, it’s going to happen, someone stymied by the old system will still get left out of the new one. And this overwhelming, “our kid has autism too! he/she deserves this” entitlement will rear it’s head again no matter what for so many kids unable to participate. And that’s not even counting the people who will miss the entire week sign up altogether for whatever reason. The pleas of “can’t an exception be made” will be deafening.

The common factor in all “charity entitlement” cases is that people cannot see beyond their own situation. Returning parents cannot see past their son or daughter’s disappointment and their own warm and fuzzy feelings on that day the same way parents of kids never chosen cannot get past their kid being “rejected” once again by what they see as an organization they see as there to serve them.

Charity is not the same as services provided by the private sector or the government and this is where a lot of people get thrown way off course. In the private sector, you are paying for a service. So, for example, if a company is offering to take your child horseback riding, you pay a certain amount for the lessons, you sign contracts, you expect service and you rail if services are not provided. With government services, you apply, you go through an approval process and if you are denied, you can request reviews and hearings to plead your case. Parents, in particular, of children with special needs are used to fighting with insurance and government to get their children services they are entitled to like therapies and education. Parents often bring that same fight to charities hoping for a similar result. This is not the right approach. Charities exist because of the kindness of others and their donations which determine where and how much they can contribute. Special needs parents often don’t see an organizations limitations or fully comprehend them because they view them in the same way as a for-profit company or governmental department. Moreover most of these special needs parents are not engaged in any form of fundraising or publicity that would help grow the charity they are asking for something from. Some legitimately do not have the time because of their child’s disability. Then there are those who simply feel they shouldn’t have to do it because. We need to stop viewing charitable organizations in this way if they are to continue being successful for our kids. When a homeless shelter is out of beds, they turn people away. When a food pantry’s shelves are empty, they stop giving out food. Why is it different for a Surfers Healing? When camp is full, no more names can be added (each camp is required to have permits from the local municipality that state an exact number of children who will be taken out into the water which is 99% why the limits). Most grant organizations require a detailed accounting of how monies will be used in a project. Why can’t Make-a-Wish put reasonable limitations on wishes?

I live the life of having a child of special needs. I know well the rewards and the heartbreaks. But I also know when I’m being a reasonable mama-bear with a therapist or teacher whose job it is to provide my child with a needed service and how not to be an asshole to an unpaid volunteer at a non-profit is doing their best to be fair in providing a non-essential extra for my kid.

Free Range Parenting and When Chickens Come to Roost

I am actually a big fan of free range parenting. I let my kids walk to the end of the units and throw trash away. I let them play outside with an adult not physically present both in our gated postage stamp back and out front and on the side yard. I even allow my boys (8 and almost 7) to use public restrooms alone. In our old neighborhood they roamed unsupervised for hours at a time riding bikes, taking walks, playing games with friends…(there aren’t many kids here their ages).

But I did all this with a wary eye. See, I had a police officer come to my front door once. The boys were playing in the median in our cul-de-sac. The officer was doing patrol and saw them. They were six and four and while there were no adults around, we could see them from inside our house. The officer didn’t exactly take them by the collar, but he might as well have. He informed my husband that according to state law, the kids were being neglected. State law says they both had to be 8 or one of them over 18 to be out and about like they were. An adult had to be physically present,  not just watching from inside the house or even the front porch. My husband had been in our front yard just feet away a few minutes before and had gone inside to use the bathroom and get something to drink. Thankfully, we were let off with a warning.

Like all great parents, I was incensed that my parenting was being questioned and undermined. But at the end of the day, the law was the law. And until we moved, we were subject to multiple law enforcement drive-bys. The kids weren’t allowed out of our front yard if we weren’t outside (unless they were in a friend’s house). It wasn’t safe enough to risk the cops taking them.

I get that parents feel like I do, we want our kids to have freedom and explore and learn for themselves in an unstructured way. I’m not naive, I know Tina Fey’s face was slashed when she was a kindergartener by a mentally ill stranger while she was playing in the alley behind her house. I’m aware kids get grabbed out of shopping carts and lured into vans while playing all the time. But I also know there is a very fine line between free-range and irresponsible parenting.

A former co-worker posted about an eight-month-old left in a running car at a grocery store. No older children in with the baby, mom just didn’t want to wake the baby (who was on a tight schedule), so she left the car running (so the AC would be on), locked it, and went into the store. Here’s the thing, the car didn’t actually lock. Her car could not lock with the key in the ignition remotely. She had no idea and threatened to sue the store when she was paged to the front because other patrons had noticed a running car with no one but a baby in it and that it was unlocked. Seriously, someone could have gotten a free car and a baby that day. This woman was irresponsible, plain and simple. This case is clear.

But what about those not so cut and dry cases. The favorite one I hear frequently is the young children left in the care of the older children in the car while mom runs in “just for a minute” to grab something or get a child from a dance rehearsal or something similar. We are trusting our children to care for other children and they do it all the time at home…

I live in an area where children are frequently left in hot cars and some of them die. In a few cases it’s a change in routine (Dad is supposed to drop the kid, who is sleeping, off at daycare which he hasn’t done in a few months and forgets and drives to work) but in more, it’s that the sleeping child was taking their regularly scheduled nap and mom or dad needed to make a stop and was only going to be a minute and then they get distracted, or the line is really long…the line is a little bit gray here. I say a little because most of us wouldn’t leave a baby completely alone, that’s why we have a nine-year-old who is capable of calming the baby and rolling down windows, right? He or she is allowed to ride his or her bike around the neighborhood alone, so sitting in a car with a baby is no big deal.

But what happens if the nine-year-old suddenly decides to get out of the car, and then locks the baby in alone, accidentally? What if she or he leaves to find mom and can’t find mom…

The fact, in that case, is that nine-year-olds don’t have the judgment capabilities of an adult. And they are not culpable. But the parent who entrusted the nine-year-old? Legally, they are responsible.

I’ve known moms who’ve let big kids (10, 9,8) take the little kids out to play in the snow and forget to bring all the little kids in resulting in frost bite for the one who didn’t get brought in.  I was at the beach in college where parents had a big group of kids together while they were socializing nearby. Suddenly they realized one little boy wasn’t there. He had wandered over a mile down the beach when ocean patrol finally found him. He was five, the parents assumed he was safe because they were in the vicinity (although not keeping the most watchful eye) and he was under the care of his 11-year-old older sister. Last year when Abby Johnson tried to give helpful hints to not forgetting a child in the backseat, she was met with hostile opposition and hateful comments about forgetful parents for the most part but she also got responses like one from a mom of nine who relied on her teenagers (fifteen and up) to get the littles out of the van one day and the sleeping six-month-old got missed. This happened somewhere in AZ and thank God her husband figured out the baby wasn’t in the house within a couple of minutes.

In the end, in all of these cases, had the ending been tragedy, the parents would have been held responsible for the death or serious injury. Even if charges were not filed, in the court of public opinion the verdict would be guilty.

And so between letting our kids play unsupervised because of the limited risk of anything happening that is “bad” and making judgment calls about how old is old enough to be responsible in a very, very real sense for younger children we have this story out of Florida: the story of Perry Cohen and Austin Stephanos; two teenage friends described by family as “experienced watermen” who went missing months ago in the ocean and whose craft was recently found. The boys had been allowed on the boat multiple times before unsupervised. They were given very clear instructions and boundaries. The parents had no reason to expect anything different would happen. But Perry and Austin decided that day to leave the perimeter set by their parents. Who knows if they’d done it before without getting caught so they figured it was no big deal or decided that fateful day to take a chance. They made the immature and inexperienced decision that day, however, to sail on rough seas and into stormy weather. They were, in fact, only fourteen-years-old. Not old enough to vote, smoke or even drive a car yet. And at the center of the storm swirling about iPhones and electronic devices are four parents grieving the choice to trust boys, not men.

My parenting methods will not change because of this but I am always careful not to put adult responsibilites on the shoulders of children who do not have the experience nor maturity nor even the reasoning to handle them. Kids make poor decisions when they do not have guidance in new, unfamiliar situations. They are not miniature adults and therefore we should not expect them to behave as such. It’s not fair to them and sometimes has disastrous consequences. Free range parenting should never mean “anything goes” and no one can expect that there will never be consequences. Like all parenting, it should be done with careful thought and consideration and part of that should be understanding that no matter how mature they behave, children are still children and parents, are still in charge and bear the brunt of responsibility.