It takes a Village

You know that saying "It takes a village", I'm not sure where that saying came from, but it's absolutely true. Sometimes it takes a village/group of good, kind people to get something done. For our little family, our "village" is our neighbors and our church ward family. They have always been there extending their hands and offering to help us, but Jeremy and I are our own worst enemies. We tend to think that we should be able to handle whatever it takes to live a full life with two autistic boys on our own, but in all honesty, we're basically just making it from day to day. There is nothing full about it, except that our lives are full of stress and we are both overwhelmed and exhausted. Like I said, people have offered to help us, but we have just been too stubborn for our own good. There has to come a time, though, when you break and this past weekend was that time for us. Jeremy's father passed away very suddenly, and we were both in so much shock that before I knew it, Jeremy was on his way to Arizona to come back…whenever he had worked things out and I found myself in shock, alone, and in charge of EVERYTHING for the time being. To say I had a panic attack, would be putting it mildly.

Well, our "village" stepped up in a big way. I finally broke down, and told them, I don't know if I can do this, to which they answered…we're on it! Before I knew it they had scheduled play dates everyday to keep the kids occupied so I had some time to myself (I am extremely sleep deprived, emotional, and now sick). They were taking care of dinners, breakfast and I was even brought a delicious piece of chocolate cake and my favorite caramel apple spice from starbucks. J They have been calling to check on me every day and some people have been coming over just to listen, which is more helpful than they realize. They have done so much for me that I have no idea how to thank them. They've been praying for our family and believe me, we have felt those prayers.

Even with all this help, I still feel overwhelmed and worried. I have a super cool Wonder Woman iphone case, except in my case the WW stands for Worry Woman. I have the power to worry, I worry about everything; the kids, I worry about Jeremy having to grieve for his father without me by his side, I worry so much I've made myself physically sick and you don't even want to know what my nails look like (there's blood on my keyboard). My immune system crashed and now I'm struggling even more to take care of day to day things like…everything; feeding, clothing, you can forget about bathing; I don't care if they're dirty for a week (bathing and getting them clean is a two person battle) and keeping one kid from killing the other. For every day that Daddy has been gone, Braden has gotten more anxious, defiant and aggressive. I've found myself being a human shield to Jackson as Braden is doing whatever he can to lash out and cause damage (all because he wanted pizza for dinner). Braden may only be seven years old, but he really is the size of a ten year old, and boy, he is strong! Despite all the help in the world…when you have an anxiety disorder, worrying is what you do (unless you have xanex, but unfortunately, I don't have any). Telling someone with anxiety disorder not to worry is like telling them not to breathe. C.S. Lewis described anxiety as a constant gnawing fire. To me, it's less like fire and more like pressure. It's a constant pressure. Sometimes I feel like Atlas, holding the world on my back (I have the knots in my shoulders to prove it).

So, getting back to my "it takes a village" statement; I am so incredibly grateful to have a village, and for their help. It seems to me that it's easy to forget gratitude when everything is going smoothly, but when we have trials and tribulations, we are reminded to be grateful for even the smallest things. I remember when we were working day after day to teach Braden how to talk and his first word was "ball". It was one tiny word, but because we had to work SO hard for it, and it took more than one person to get us to that word, but I was ready to throw a party. A typically developing child will naturally learn language and communication, and I believe that it's pretty easy for some mothers to take that for granted. I have nothing against those mothers; I envy them. I have had a life full of trials of one kind or another, so, naturally I assume I'm stubborn headed and am in constant need of reminders to be grateful. I am grateful though. I'm deeply touched by the outpouring of love and compassion that has been shown to us. If not for my "village" I honestly don't know what condition I would be in now, but I'm guessing it wouldn't be good. When we moved from Arizona to North Carolina, we left our families behind, but one of the most wonderful things about the Church of Jesus Christ of Latter Day Saints is, no matter where you go in the world, you have a village of people waiting to welcome you.

Autism and Wandering: The Realities

I decided to do a post about autism and the problem of wandering because I have seen in the last year alone at least five instances of autistic children getting out and wandering off. In these unfortunate cases, each child has been found dead (it literally hurt me to type that word just now). The most high profile case in the news has been about Avonte Oquendo, but there have been others in this last year too. Most of them have been found in bodies of water and each of these kids seemed to be around Braden's age, which is why they're striking a chord with me right now and why I want to tell you a little bit about the problem of "wandering". Many people may wonder why these children didn't know how to swim and why did they go near a body of water if they couldn't swim. Well, we've tried every summer to teach Braden how to swim, but if it's not interesting to him, we lose him. He LOVES playing in the water and is far too interested in that than learning to be safe in the water. We get quite a few strange looks from people at the pool sometimes when our almost eight-year-old (though he looks like he's ten) is still wearing floaties in the pool.

It's a good thing for children to be curious, that is how they learn. By questioning something and then working to find the answer. I spent a lot of time outdoors exploring the world around my home as a child. I was learning all about frogs, lizards, tadpoles, grasshoppers and any other little critter that I came across (I was an adventurer and it was epic). But, I knew there were boundaries, and I certainly pushed them sometimes because I was just that kind of kid, but I always knew how to get home and when I had gone far enough. We've owned a few beagles and one thing that we were always told about a beagle is that they may be a loyal dog, but they will follow their noses wherever it takes them, and many get lost that way. I think autistic kids are similar. They get some idea in their heads and they want to go where it takes them, but they just aren't aware of the dangers because they're too focused on "following the scent".

When Braden was little, we noticed that he had no sense of fear, or danger. He didn't understand that we were his parents and we were in charge of protecting him from harm. He had no separation anxiety when it came to leaving us, he would wander off with anyone who took him by the hand, or he would wander off by himself to explore something, but not realizing that he was putting himself in danger. He was what I called an "escape artist" because if there was a door open, he seemed somehow compelled to go through it. One Sunday at church, when Braden was about two, I went to the nursery to pick him up, but didn't see him, about thirty seconds later, Jeremy came in to pick him up and I panicked. Braden must have slipped out the door in the chaos of all the other parents coming to get their toddlers. In that moment, my heart constricted to the size of a grape and I immediately began running through the halls uselessly calling Braden's name (he still didn't respond to his name) and stopping anyone who knew us asking if they had seen him. When church ends and everyone is in the process of getting all of their children together to go home the church doors are opening and closing constantly, cars going through the parking lot, a very dangerous situation for a small boy who doesn't know a car can kill him. It took us ten minutes to find him. He had decided he wanted to play behind a fake potted tree in one of the lobbies. It was the longest ten minutes of my life. Time stopped and every worst scenario ran through my mind during those ten minutes. I was a total wreck. He did it to us again at the mall one time. He was standing next to Jeremy one second, the next, he was running straight into a department store, we found him hiding in some racks of clothes, but the kid was seriously going to give me a heart attack! So, you people out there who see a parent with a toddler or even an older child in a harness and leash out in public, PLEASE DON'T JUDGE! You have no idea what their circumstances are.

When I think about the possibility of Braden getting out of the house, or away from school and about losing him or Jackson the way these families have lost their special little ones, my heart does the same thing it did that day, and I weep for them just thinking about it. I honestly can't even imagine the grief that is swallowing these poor families. Myself, I've become extremely paranoid about where my kids are at all times because I know that I'm strong, but I know I wouldn't survive that kind of grief. I believe in an afterlife and I know that my family will all be together in the next life, but I can't imagine living the rest of this life without one of my boys. This applies to any parent who has lost a child. I'm just being specific about the risks that apply to my little family because there is a higher probability of something happening when your children go out into the world, not understanding what danger is (no matter how much you try to teach them). They just don't know what the boundaries are, or why they matter.

After Braden was diagnosed with autism, I read a book called The Curious Incident of the Dog in the Night-Time. It's an odd title, but it's also an odd book (but we specialize in odd in our house). It was written by a man who works with autistic children and it is written from the perspective of an autistic teenager. The author, Mark Haddon, does a pretty good job getting into the head of an autistic teen. This boy is trying to solve the case of a neighbor woman's dog being found gruesomely murdered and left on her lawn. Throughout the duration of the book, he leaves his home in the middle of the night several times, he wanders through his neighborhood and eventually wanders so far that he is picked up by the police and brought back home. Unfortunately, he had one absent parent and the other was burnt out, so there weren't very many people looking out for him. After reading this book, as a mother of a freshly diagnosed child, I was petrified! Looking back, it probably wasn't the best book for me to read right after getting that diagnosis, but in a way, it's helped me to be a lot more alert and aware of the wandering issue. I dreaded (and still do) the day that Braden would be able to get through all of my "security barriers". Right now, we have chains up high on all the exit doors, the backyard gates are padlocked, and we have an alarm system that tells us when a door has been opened, and which door it is. For me, it's still not enough to take that fear away completely. When I meet someone new and invite them over, they probably think I'm crazy, because as soon as they are through the door, I deadbolt and lock the chain immediately. I'm sure some of those scenes from all the scary movies they've watched go through their heads, you know, where they go to see a "friend" and once they're inside, the friend/serial killer locks them in the house to kill them. I always make it a point to explain that my children are escape artists, and must be locked in for their own safety. Then I'm sure they are imagining all those scenes where children are held captive, and never allowed to leave (Flowers in the Attic). Either way I guess I end up seeming like a psycho, but what they don't understand is the constant, unending pressure put on me to keep my kids safe from themselves. I suppose that could drive someone crazy, but so can losing a child.

They have GPS trackers now that you can put on your child's shoe or sew it into an item of clothing, but the problem with that is that they may not be wearing that piece of clothing or even their shoes (and we all know that predators out there will cut that kind of stuff off). As hard as it is, I have to think out every possible scenario and try to counter it somehow (that means thinking the way a predator would). Anyone who has read a John Douglas book knows what I'm talking about. He used to be an FBI profiler (yes, it's a real thing, not just a TV show). Not to get all science fiction on you, but what I really want, is a GPS tracker INSIDE of my kid. I know there are a lot of issues with rights of privacy and people get stuck in a George Orwell novel thinking about putting a tracking device inside of someone, but, think about it, it could be the difference between life and death for a child. For a child with special needs, it means just that, they are different and need certain SPECIAL allowances made in their case to keep them SAFE! I don't know if the technology exists for something like that, but if it does, someone needs to be doing something with it and I would be the first to sign up! Would I be fear free then? No, I would not. Any good parent worries about the safety of their children. My mother routinely makes phone calls to every one of her six children if she hears something on the news like a fatal traffic accident, for example, in the vicinity of where they live or work. She's our mom; she still worries about us even though we're all grown up. So, I will never stop worrying about my children's safety, that's just part of being a mom, I just have a bit of added pressure in my case.

The issue of autism and wandering doesn't only apply to small kids either. Even grown people with autism can wander. It's an issue that never goes away and it plagues me every day of my life. Not just for myself, but I feel the pain for those families whose children (no matter how old) have been lost. We spend so much time and work SO hard to pull them from that world they live in inside themselves to the one we live in and sometimes we succeed, but that world will always be there, trying to make them retreat back to their safe (but unsafe) world.

IEP Meetings! EEK!

What is an IEP? It is an Individualized Education Plan. Sounds simple doesn't it. It most definitely is not simple in any form. I have dreaded IEP meetings since before I ever attended my first one. I had been warned by therapists and other parents about what a nightmare it can be. Having a child with special needs means you go to many meetings, doctor's visits, evaluations and more meetings. What is different about the IEP meeting is that you are going into battle for your child's education. When I say battle, I mean battle. You have to fight them for every precious minute (yes they count how many minutes exactly) of therapy time and where you want your child to be placed. Many parents with typical children will have parent teacher conferences and that's about it. An IEP meeting is much more terrifying. If you have a spouse, therapist or advocate that is willing to go into battle with you, it's a little less scary, but for me, it's usually just me against the school district. Jeremy has been to maybe one or two IEP meetings, because he usually has to work or babysit Jackson while I go. Here is how my last IEP meeting went.

I walked into the school office, bracing myself and rehearsing every argument I could think of to get what I wanted for Braden. They lead me back to a conference room where there were about four people (I didn't recognize any of them) sitting. I sat down in a chair and waited, knowing there were more people on their way. By the time the meeting got underway, I was outnumbered nine to one (the odds were not in my favor). I sat there feeling like a child who was in trouble, big trouble. Why was I in so much trouble? I had asked for Braden to be put into a mainstream (meaning normal) classroom with the help of an aide. Braden likes to mimic the behavior of the kids around him, so I believed it would be good for him to be around typical kids and just have some help from an aide. Made perfect sense to me, but this kind of request is always met with balking because it costs the district more money for Braden to have an aide to himself. They had nine people there to tell me I was wrong, and that after evaluating Braden they had determined that he was not ready for a mainstream class. Each of these people were professional educators, how was I supposed to argue with them? Except to say, they had only observed or evaluated Braden for a short period, where as I am his mother and think I know him pretty well. My opinion counted for squat. They knew what they wanted to do with him and they were determined to shoot me down. I didn't stand a chance. Once I had been put in my place, the rest of the meeting was spent determining a set of goals for Braden to work toward during the next year. I left the meeting feeling defeated and weary (the meeting lasted at least two hours).

Some IEP meetings go smoother than my last one, but they all feel about the same for me. I feel like a soldier getting ready for a battle that I know I can't win, I may have a few small victories but in the end, I'm doomed to fail against the bureaucracy (the school district) that always has the final say. I don't blame the teachers and education professionals whose hands are tied by things like budgets, and politics of the school district, which makes it all the more a losing battle for everyone, but for Braden most of all.

I'm currently getting ready to attend what's called a transition meeting for Jackson, who will be going into the special education pre-school. That's simply code for the meeting to prepare me for the IEP meeting. Even though I'm a veteran of IEP meetings, they make you attend all these meetings. It's just procedure. It's hard for me to imagine my little Jackson going to school. He's such a small boy still. He's two and a half but he's the size of an eighteen-month old. He still seems like a baby to me. He's not ready for school; he can't even talk yet! I know it will be good for him though. Braden's speech improved so much after he started pre-school. Jackson is so different from Braden in his social issues though. Braden would walk off with any stranger who asked him to, Jackson is very attached to me, so I think he's going to struggle at first.

Now, IEP meetings aren't only about goals and how much therapy the child needs; it's about placement into a certain program for the next year. Every district has different programs for different special needs children. So at the IEP they determine which program will best fit the needs of the student. For both of my children, it's going to be an autism program IF the district has one, and IF there is room for him. Braden has never attended the same school two years in a row since he started pre-school. Every year for some reason or other, he is moved to a new school. I absolutely HATE this! Children with autism thrive on routines and they don't deal well with change. We've had Braden at good schools and bad schools; every time they tell me they're moving him, I panic, not only for myself, but also for Braden.

I don't know about other moms who have kids with IEP's but this is how I look at it. I'm a warrior; I go to battle for my kids and I fight tooth and nail for everything I can get them. I dig up as many resources as I can muster, and I fight. That will never change. Some days I feel like I'm battling the world we live in with its imperfections, other times I'm fighting the schools or I'm fighting the state for more resources. Sometimes I'm fighting against my own inner struggles and feelings of failure. I even have to do battle with my kids, to help them, but they don't see it that way, they just see me as someone who won't give them what they want. Braden puts up a good fight too, now that he's almost as big as I am, I literally can't restrain him when he's out of control. The last time I tried to clean out his ears (which get disgustingly waxy), I got a head to my chin and I was sure he fractured it. That was several weeks ago and it still hurts, but I've learned to pick my battles. If he wants waxy ears, so be it. Isn't it silly that we have to battle with him over something as dumb as earwax or nail clipping or hair cutting, don't even get me started on Braden and boogers! I would call any mother of a special needs child a Warrior Mom and so to you Warrior Moms out there, keep fighting, keep praying and never, never, never give up!