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!

Down the Rabbit Hole...Again?

It's not as if it was a huge shock to me that Jackson was diagnosed with autism. What shocked me were my own reactions to hearing it. I expected it, it should have been easy but it wasn't. I would even go so far as to say that it was harder looking into the face of an autism diagnosis the second time around than the first. The first time, I had no idea what to expect, or what would be required of me as a mother. The second time, I knew how difficult the road ahead would be and despite my thinking I was ready to take on that challenge, I wasn't sure I had enough strength left to do it all again (but this time, I lived thousands of miles from my family support system as well as the government resources). This time, Jeremy and I would be on our own and only have each other to lean on in the most difficult times. I went through the grieving process, the same way I did with Braden. I had to let go of the future and the hopes and dreams I had for Jackson. We have to live one day at a time in our home and that's the way things will be until the day I leave this earth. Only now I have to worry about who will care for BOTH of my boys after I'm gone.

Jackson isn't getting hours and hours of therapy the way Braden did, because the State of North Carolina bases their system of helping these children on the income of the household. Jeremy makes decent money at his job, enough for us to live comfortably, but the amount of money it takes to pay for GOOD autism therapy would require us to be making much, much, much more. Here is how I feel at the end of most days: helpless, frustrated, sad, alone and just plain worn out. Can you see why I have been writing so much about the importance of compassion? Even just having someone come and listen to me, and share some grown up company with me is a balm to my soul. Since moving away from our support system, we have been relying on our friends, neighbors, and our "church family" for support, and we have been truly blessed and I am so grateful for that help, I don't have enough words, or the right words to express that kind of gratitude.

One of the most difficult things for me, and for Jeremy, is asking others to share our burden. For the record, I am NOT calling our children a burden, our children and autism are separate things. They are NOT autism and autism does NOT define them. They each have their own personality and their own way of seeing the world just like all of us, the difference is that THEY carry the burden of autism and sensory processing disorder. They are the ones who struggle to communicate their feelings and needs and get so frustrated by their inability to do so that they have meltdowns. They are the ones who have such a hard time coping with our loud and intense world (which they don't understand) that they have no other option but to tune out EVERYONE, including their own parents who love them. Any parent who has a sick child, even if they only have a cold, wishes they could just "make it all better". I know my children are locked up inside themselves and it…breaks…my…heart, every single day—that is the true burden of autism. I'm forced to watch my children suffer the effects of this disorder every day of our lives and I do my best to help them get through the day and try to teach them how to cope with this burden that has been put on them, and through them onto us too. The meltdowns, medications, IEP's and other frustrations are only byproducts of autism.

 I belong to a wonderful church family that loves us and wants to help us, as well as our family living back in Arizona. I know how hard it is for them to be so far away and how much they want to help, but can't simply because of the distance between us. I am asked very often by caring church members, "What can we do for you?" Jeremy and I both have NO IDEA how to answer that question. I can't expect them to hold my child down while he has a meltdown, or understand what they are trying to say when they can't say it. Most people don't understand autism the way we do, they don't understand our children the way we do, so how can they help? The fact that they care enough to even offer warms my heart, but how do you share that kind of burden? With Braden, we had a trained professional (paid for by the state) who would come and work with him for three hours every day and I would get a chance to either catch up on stuff or just relax. Boy, do I miss that! The most I can ask is that they try to understand what we go through each day as a family.

Autism affects 1 in 50 children now. When Braden was diagnosed, the number was 1 in 88. Everyone is so busy asking themselves what is causing this "epidemic" and how do we stop it, how do we cure it? Don't even get me started on the vaccine argument. I have my own theory as to why we have high numbers of autistic children in today's world, but my theory probably only makes sense to people who are religious and believe that our spirits lived before we came to earth and we will go on living after we leave it. (FYI prepare for more discussion on compassion) I'm going to share my theory anyway. First, there were probably several people throughout history who were on the autism spectrum, but because the world did not understand the disorder to begin with, they were discarded human beings, thought to be crazy or they were simply put in institutions. Those that did learn to function in society are now hailed as geniuses (Albert Einstein and Nikola Tesla for example). We are simply more aware of the disorder and it's symptoms now, and therefore, the number of diagnoses would naturally go up. Second, I believe that God is a loving being and I believe he has saved many of those spirits who would be asked to bear the burden of autism in this life for a time when the world understood it better and would be more compassionate to them. He did not want them to suffer so much, because their spirits are so pure and innocent. They haven't come to earth to be tested like the rest of us; they've come here to teach us. I believe that through them, God is trying to teach the world to have more compassion in general. Why does God want us to learn that all-important lesson? He wants to remind us that he sacrificed his son for our sakes; out of compassion for us and by learning to be compassionate to others, we become more like him. Let me share a scripture (one of MANY) that I believe sums up what I'm saying: 1 John 4:7 Beloved, let us love one another: for love is of God; and everyone that loveth is born of God, and knoweth God.

If you're reading my blog, you obviously know someone affected by autism; I think that just about everyone in the world knows someone with autism now. I'm sharing my personal journey to help those who may not fully understand autism and how it affects not just one person, it affects us ALL.

 

One Crazy Summer!

I'm going to skim over a few years of Jackson's life because, well, that's just what happens to second children most of the time. Jackson seemed to be pretty typical at first and he gave us great eye contact, so we were excited that we might have a neurotypical child. I was especially hoping for this because I worried a lot about who would take care of Braden when Jeremy and I aren't around anymore. As he got to be about one year, I began noticing little things. Things that I had seen Braden do that were red flags for autism, but I kept telling myself that maybe he saw Braden do it or something. (Even though I knew better, Braden had not done those things for a long time but we like to hope for the best and delude ourselves about things sometimes.) Around one-year, he still wasn't talking, or walking. We ended up in a research study being done by the University of North Carolina on an experimental early intervention treatment program for children at risk for autism. Having a sibling with autism, pretty much guaranteed that we were going to be chosen to participate in some part of the study.

They did a number of evaluations on him when he was a little over a year old. He had delays. It was beginning to confirm my fears, but he was still so young and we were going to participate in this experimental intervention, so I had hopes. He would do the intervention, which was someone coming to the house once a week to work with him, and we would do that for one year and then he would be evaluated again at two-years old. He began walking finally at nineteen months. Now, fast forward through the year of therapy and we come to the summer of 2013 it's one we will never forget.

The summer of 2013 I decided I really wanted to visit my family in Arizona. Not just a short visit, I wanted to stay for at least three weeks or more, so I planned to drive across the country with the kids (cheaper than flying) and stay for the duration of Braden's summer break. We would be there for a little over three weeks. Jeremy was going to drive out there with me and stay for a week, but then fly back for work and I would have help from my sister, Sarah on the drive home (I'm not crazy enough to attempt the drive by myself). We planned to leave on June 28th and return on July 22nd or 23rd depending on how long the drive took, so I would be there for most of July. Trust me, I have learned my lesson and will NEVER visit during the summertime again! After being gone for almost three years you actually forget how dang HOT 120* is; it made me appreciate the beauty, and even the humid summer heat when I got back.

Jackson was scheduled for his second set of evaluations, which would include a psychologist and the ADOS (the test they do to test specifically for autism symptoms), at my request, because by this time, I was fairly sure he was somewhere on the autism spectrum. I was still holding onto a kernel of hope that he only had developmental delays, and we would be able to get him some help and he would "catch up". His evaluations were scheduled for Friday, June 14th, but he suddenly began running an unexpected fever that week and they didn't want to do the evaluations when he wasn't "at his best" so they were cancelled. (This was intervention on God's part. You'll find out why in a minute.) That same Friday, I got up and my stomach wasn't feeling very well so I was grateful I didn't have to sit through four hours of evaluations that day. I had some pain in my upper abdomen. I dropped Braden off at school and by the time I got home, the pain had doubled, and I was not feeling well at all. Jeremy came home from work and I was lying on the couch because by then I was feeling nauseous. He had me eat a little something to see if it would help the nausea, but I immediately threw up, it made the pain triple and I couldn't get off the bathroom floor. I threw up a few more times and at that point, I was crying and lying on the bathroom floor. Jeremy packed Jackson in the car and practically carried me to the car and we went to the local urgent care. By the time we got to the urgent care, I was in so much pain that I couldn't walk. The doctor came in to see me and I was literally shaking from the pain and could barely talk to him. He immediately told Jeremy that they were not able to give morphine to patients and there was obviously something very wrong, so they called an ambulance to take me to the hospital. Anyway, after several hours in the ER, and a CT scan, they discovered that I had appendicitis, which made no sense to me because most of my pain was in my UPPER abdomen. I had my gallbladder removed years ago because of gallstones. They discovered the gallstones when I went in thinking I had appendicitis because of pain in my LOWER abdomen. My body is just all messed up like that. So, by ten o'clock on Friday night, my appendix had been removed and I was in recovery, but I was really worried.

We were supposed to leave for Arizona in two weeks! Jeremy couldn't take the time off to help me recover. We would need help from someone, but who? Then we had an idea. The kids in Arizona were off for the summer and we had a niece who was seventeen and would be more than capable of helping out. We called to see if she would be willing to fly out and stay with us and then drive back to Arizona with us in two weeks. Thankfully, she happened to have nothing to do for those two weeks and was willing to come. We flew her out here to help and thank Heaven for her! She will be blessed for her service, because there is NO WAY I would have been able to get ready for the trip, take care of the kids, and all the other crazy things I end up doing all day without her. She was a champ! I think she got a little taste of what my life is like, and I think it opened her eyes a little and she learned a lot about autism and about all the little things our mom's do for us. She is an amazing young woman and I am so proud to be her aunt. Her parents have done an amazing job with her, and ALL their kids. I was grateful to get to see her so much and get to know the young woman she's grown into. (We had never spent this much time with each other before)

I have many people to be thankful for during that time. My neighbor, who I called and woke up at five o'clock in the morning the Sunday after my surgery because I had begun throwing up uncontrollably, and had to go back to the hospital (my niece wouldn't be in until Monday). She came over and stayed with the kids while Jeremy took me back to the hospital. I ended up having to spend another night in the hospital because they wouldn't let me leave until I could keep something down. (Throwing up after surgery is the worst…thing…EVER!) I had people from my church bringing in dinners and taking care of the kids. The mom of one of Braden's school friends, offered to pick up and drop off Braden from school for the rest of the year. That was SO awesome of her because I knew Jeremy wouldn't be able to and I think my niece, though she could drive, wasn't that experienced and I would be on pain killers so there's no way I would be able to drive him. I was very thankful for her willingness to do that for me. My point is this, my last post was about compassion and service. Without the compassionate acts of these wonderful people, I honestly don't know what we would have done, and it would have put a burden on our shoulders that I can't imagine trying to bear alone, especially Jeremy. He does so much to help out already, that I'm sure it would have been more than even he could handle.

June 28th rolled around and we packed three adults, two children, and all of our luggage into our highlander, and headed for Arizona. Let me tell you a little bit about traveling with children who have autism. You MUST HAVE: movies, snacks, little surprise toys as rewards for good behavior, earplugs and a whole lot of patience. Normally, the drive from Raleigh, NC to Phoenix, AZ would take a minimum of three days. Mine and Jeremy's philosophy on this was, do it fast and furious, like ripping off a Band-Aid. We made it in two days. Yes, the drive sucked, but at least it was comparatively short and my kids don't do well at hotels. My niece and I gave Jackson the nickname of "butt-face" because he "slept" between the two of us and one of us always woke up with his butt in our face. Anyway, it was a great visit, aside from all the sunburns. The Drive back was about the same. My sister quickly realized that it was best to…just keep driving…just keep driving (you get the point, right?).

Braden started school about four days after I got back so I had to get him ready to start school, meet his new teacher, buy school clothes and work out transportation. They switched him to yet another school and it was about eight miles away, so, I bit the bullet and decided to try the transportation one more time. We also had rescheduled Jackson's evaluations for the second week in August (about two weeks after we got back). We went through the four hours of evaluations, and endless questions and testing. At the end of it the psychologist, speech pathologist, occupational therapist and someone else, sat us down and gave us the run-down of what they learned. SPEECH: He's severely delayed and may have apraxia (we'll discuss that later) OCCUPATIONAL THERAPIST: He has definite sensory processing disorder (SPD) (we already knew that though.) PSYCHOLOGIST: He qualifies for a diagnosis of Autism. THUD! That was the sound of my heart dropping. It has become the craziest summer I think I've EVER had. (below are a few pictures from our visit)

 

Braden LOVES dogs and cats and especially Grandma's dog Rusty, but Rusty is getting a little old to tolerate so much love anymore.

Stabbed myself in the hand accidentally (I'm a very accident prone person in general). Couldn't feel the tip of my middle finger for at least two months.

 



The Lone Braden on the drive back from Arizona

Jackson being cute with Grandma's Glasses





 

Jackson is such a sweet boy, I don't know what we would do without him. He truly completes our family.

Compassion is Simple...Just do it!

I had a completely different post that I was going to do about Jackson meeting his milestones and blah, blah, blah, but somehow my heart took over and this post took on a mind of its own. My writing does that sometimes. I was writing about how much I worried about Jackson meeting his milestones, and I realized that you should understand how much I worry in general and why, to better understand me, and how I handle parenting. By the end of this post you might be thinking to yourself that I am either a very strong person or a very weak one, but the truth is...I am both.  

Now, let me admit something that is very personal to me, but it might give you a little better insight into my life and why, sometimes (ok, most times) it is pretty stressful for me, aside from the fact that I have two sons with Autism. I have what is called Generalized Anxiety Disorder (GAD) and Major Depressive Disorder (MDD). I have struggled with both of these things since I was very young. Ask my mother how insane I went during puberty; I was a nightmare and we're both fortunate I survived at all. Anyway, I don't need to go into my life history other than to say I worry… A LOT and there are literally limits to my ability to be "happy" that have NOTHING to do with my attitude. It's an issue with my brain chemistry and I take medications daily to try to keep myself from completely losing it. How do these conditions affect my ability to care for my sweet boys whom I love more than anything in this world? Well, I'm so anxious about them and about their future and their current development and behavior issues, medication issues them getting hurt or wandering away…etc. The list of my worries goes on forever. I admit, not all of them are something I should need to worry so much about, and I know that, but try telling that to my GAD. It doesn't care; it just makes me feel a constant sense of pressure and uneasiness that makes my ability to remain calm in the many difficult situations I face severely diminished. I'm fortunate to have a husband who is the exact opposite and is able to remain calm in just about any situation. Sometimes I am amazed at my ability to handle a situation with patience and others, I'm just a hot mess and that's usually when Jeremy has to step in and literally send me to my room. (Thank heaven for him) Whenever I tell someone that I have two children with Autism, they tell me I must have a lot of patience. How would I know? I don't see how most other mom's really deal with their kids. They seem to make it look pretty easy most of the time, which makes me wonder how much patience I actually have. We all have this complex about seeming as if we have everything under control while we're out in public, but when we're at home, it's a different story. We yell, and do things we wouldn't normally do in front of another mom. So, no one gets the whole picture of what someone's parenting really looks like. It's a pity to me, because it almost feels like we're lying to our fellow mothers and just trying to make ourselves look better than we really are. Every one of us wants to be "Supermom" but we're all setting ourselves up for failure if we try to compare ourselves to other moms' "public" parenting.

My issues with MDD are different. I go through periods of severe depression where it's literally debilitating and I have zero motivation to do anything at all, functioning on a daily basis becomes a difficult task in itself (and by function, I mean just getting through the day, not accomplishing anything else). When I have these periods of MDD, they can last months, or even years depending on the stress levels in my life. After Jackson was born I spiraled into one of these episodes, and even though he is two and a half now, I'm still trying to claw my way out of the darkness. I have good days, and bad days. If you haven't figured out by now, writing is one way for me to cope with this. Writing is my outlet and my tether to sanity. On days I don't get any writing done, (whether it's a blog post, or working on my novel that I desperately want to finish and get published, but that's a whole other story.) I feel more frustrated, sad and generally like a failure. So, even if no one in the world reads this blog, it doesn't bother me. I don't want to make money from my blog, I want to share my story and my insights, as narrow as they may be. Maybe someone will read my story and realize they feel the same way or they gain a better understanding of themselves from my experiences. I heard a quote once and I don't remember who said it but it goes like this: "A smart man learns from his mistakes, a really smart man learns from the mistakes of others." I've made plenty of mistakes and I'm willing to put myself out there, and make my vulnerabilities public so that someone else might avoid making the same mistakes I have. I said it in the very first post of this blog. It's my REAL life, not what I want people to think it is (this isn't Facebook). My life is messy, my house is messy, my children are messy and despite my desperate wish that I had the strength to be "Supermom", I don't and I'm not. I do the best I can and that's all I can do.    

One of my BEST "medications" is my religion and my belief in God. There are many people out there who would scoff and say, God doesn't care about you, you're one person in billions. They're right, I am, but God isn't like us, he has the capacity to care for every one of his children on this planet that he created. Much like I have an increased capacity of patience at times I normally wouldn't because, well, it's my children I'm dealing with, and I love them. We are ALL God's children. In my religion, much like any other religion (I'm Mormon btw and I may someday do a post just about how being Mormon has changed my life, but not today.) we believe that when we are faithful, and we pray and keep God's commandments, we will be blessed. I have had so many struggles in my life thus far; you might look at me and say, 'Sheesh! What did you do to make God so mad at you?' I used to think that too sometimes, because I'm not a perfect person and I don't keep all of God's commandments all of the time. You would be seeing it the wrong way; God isn't punishing me by putting me through these things. As I have begun to learn (and still struggle to) that as long as we are trying to keep God's commandments, we are blessed. Being "blessed" by God doesn't mean he's going to make your life easy or everything will be sunshine and roses all the time. Through our trials and difficulties in life, we learn more about the complexities of the human condition and about ourselves as individuals, what we are capable of accomplishing or even just capable of enduring. We learn to have more compassion for those around us, knowing that they are fighting their own personal battles as well.

You wonder how God tries to care for the billions of people on this planet. I believe that if we all had the kind of love for each other that he has for all of us, that would pretty much get everyone taken care of. These are simply my personal beliefs, but what does this have to do with my life and Autism? COMPASSION! The definition of compassion is: sympathy for the suffering of others, often including a desire to help. Compassion turns to service when we act on that desire to help. Ever heard the saying "Love is a verb"? This is the same thing. I can't tell you how much little acts of compassion or service can change a person's day, or life even. I belong to a religion that values compassion for others and believes in serving others who are struggling or in need. Throughout my life, I've usually been the one in need of that compassion and especially now, having two children with Autism along with my own inner demons to fight daily. Those little acts of compassion from others mean more to me than anyone realizes, so if we ALL showed a little more compassion, I can guarantee the world would be a better place. Autism, GAD, MDD…and hundreds of other debilitating disorders of the mind, (an organ so complex that it takes geniuses to study it.) cannot be physically seen. We only see people, we may assume they are "normal", but the truth is, they may be someone in need of YOUR compassion and help at that very moment. Even if someone has a perfectly developed and neurotypical brain, you should STILL have compassion for someone suffering. My point is this, look around you, pay attention and you will begin to see it, people who can use something as simple as an encouraging smile to help get them through another day. I can't tell you how many times I've needed THAT at the grocery store or the mall or wherever rather than the glares or outright rude comments made about my children's behavior. Whenever I see a mother or father struggling with an unruly child, I try my best at least to give them an understanding and encouraging smile or even an outright compliment, because I KNOW that's just what they need at that moment. That is if I'm not too busy dealing with my own screaming child, in which case, we often look at each other and know we're both in the same boat and that's nice too. This world is full of all kinds of people. In my opinion, there is no such thing as "normal", but what this world NEEDS is more compassion. My own struggles and watching my children struggle has taught me compassion if nothing else. I'm still not "Supermom" in fact she doesn't even exist! There's a reason she's called "Supermom" she's named after a fictional comic book hero with SUPER POWERS. Sorry ladies, as much as we wish we had them, it's just fiction. So there you have it. I'm strong enough to admit that I'm weak. Be a REAL mom, love your children, love the imperfect world we live in that is full of imperfect people and just be…compassionate to everyone around you, or even take it one step further and act.

Meltdowns, Medications and More

And now...a break from our regularly scheduled programming.

I'm taking a break from story telling because I feel compelled to write about something we've been dealing with very recently.

Meltdowns:
Every child has tantrums. A tantrum is never easy to deal with for any parent and I am not making light of what other parents of typical children deal with because I'm sure that there are some real doozies that every parent has to deal with, but to me, there is a definite difference between a tantrum and a meltdown (and I also believe that a typical child can have a meltdown). A tantrum is crying, throwing themselves on the ground, and general disobedience, but doesn't last longer than a few minutes. A meltdown (imagine a nuclear meltdown, it's aptly named) on the other hand, is when a child completely loses control of themselves, tries to injure themselves or others and seems to go on FOREVER (a minimum of 30 minutes). Most of the meltdowns that we deal with last around an hour or two until both child and parent are completely exhausted. Why does a meltdown last so long? It's because the child is SO upset that they literally cannot calm themselves down. I gave a detailed story of a meltdown that happened while traveling in the car with Braden in my last post, but here is what a meltdown at home is like for us now. Braden weighs seventy-nine pounds and the top of his head almost hits my chin. (Granted, I'm only 5'2" but he seems tall for his age.) He is seven-years old, but wears size TEN clothing. He's a BIG boy! It's becoming nearly impossible for me to safely contain him during a full-blown meltdown. It's even becoming hard for Jeremy to control him. (I'm afraid to think about teenage meltdowns! Yikes!) 

Last night I came up to bed at my usual time (around midnight) and I could hear Braden awake in his room, which isn't unusual for him, he is usually awake for at least a few hours sometime during the night. He must have heard me come up because as soon as I laid down in bed, he came into my room and asked "Where's Daddy?" I told him that Daddy was sleeping downstairs and for him not to bother him. Then Braden decided he wanted to play on the iPad, to which I responded that he couldn't because it was the middle of the night and he was supposed to be asleep. I knew this would set him off, but I'm not about giving into his every whim, just to keep the peace. I'm one of those crazy parents who is trying to teach him that the world doesn't revolve around him. He immediately growled at me and said "iPad!" loudly. I didn't want him to wake Jackson who was sleeping, so I took Braden into his room and TRIED to reason with him (which, I also knew was not going to work). He got more and more agitated and kept asking for Daddy. Jeremy wouldn't give into his request for the iPad anymore than I would, but Braden loves Daddy, A LOT, and is willing to try ANYTHING to get what he wants, so he started growling and stomping around his room (shaking the whole house). Jeremy was woken and came upstairs to help. Braden got even more upset when Daddy told him "No iPad" so he began crying, kicking and hitting at whoever or whatever was closest to him. We were both trying to be patient with him, but in the middle of the night when you're tired, that's not the easiest task. Braden was crying uncontrollably, hitting even himself in the head. No amount of reasoning would work. We had to restrain him using our full bodyweight (and all my strength) while he fought us. The meltdown lasted two hours until he literally wore himself out and fell asleep. Jackson thankfully only stirred a little throughout this ordeal (yes, I said ORDEAL and no, I'm not exaggerating). This is a pretty typical meltdown for Braden.

Medications:
There are so many different therapy options for treating children with Autism, when you first get that diagnosis, you have no idea where to begin. I don't know every option out there, but seriously, if you just Google Autism treatment, you get a million hits. The most difficult decision I've ever had to make was whether to put Braden on medication. When we moved here, he wasn't taking any medication, but he was spending so much time in therapy, that he was doing awesome. When that all stopped and the adjustment disorder kicked in, we were at a total loss. The aggression that he had was insane. We didn't want him getting kicked out of school for hurting someone. He even hurt me several times, and with a new baby on the way, I was very, very worried. The doctor suggested putting him on a medication to lower his adrenaline levels and would make him less aggressive. I was at my wits end and with no help (other than Jeremy), we decided to go ahead and try it. It was a last resort for me, but if Braden was going to have so many behavior problems that he wouldn't be able to progress, and the medicine could help, it was worth trying. It wasn't a decision we made lightly. He was put on a low dose and things seemed to mellow out for a while. Over time, though, and during a particularly difficult school year at a really crappy school, we added another medication. Again, it helped a little, but the side effects caused him not to realize his stomach was full, so, he put on a lot of weight after starting that medication. I'm not against children taking medication if it's absolutely necessary and in our case, it was.

Here is the other issue with medications, especially when a child takes multiple meds. It requires things to be monitored and there is a delicate balance that has to be kept in the body. So, making any changes to the medication regimen is super scary and can reek havoc on your household. We found that out with what we call the "Zoloft" debacle. It was two weeks of hell. No kidding. So we don't make medication CHANGES lightly either. Braden has always been a big kid, but the medication he was on was causing him to gain a lot of weight. He was constantly wanting to eat and we were constantly trying to keep him from overeating and it was causing more meltdowns. We decided to try a different medication in the same class of drugs but was supposed to have less of the overeating side effect. Well, sure, he's eating less, but holy moly! The meltdowns, aggression, defiance and more are all back with full force. The crappy thing about this medication is, we will have to taper him off of it, which means we will be looking at several more weeks of this. Then we will have to decide whether we want to put him back on the other medication. It's very frustrating and confusing. We want to do what's best for Braden, we will obviously have to talk with the doctor, pray about it and suffer through the consequences of that choice.

More:
Ok, Meltdowns and Medications aside, I want to talk about More. What is "More"? It's all those little moments when Braden says something so quirky and random that Jeremy and I can't stop ourselves from bursting out laughing. There are so many of these little moments that it would be impossible for me list them all, but you can check mine or Jeremy's Facebook timelines to find a few of them. The funniest thing about these little moments is that he doesn't skip a beat. We will ask him a question, expecting a certain answer, but he will answer us with something completely wild and definitely defying our expectations and it's usually a very clever way of looking at something. It's these little moments that give us a little glimpse into how Braden sees the world. There are also many little moments when Braden will crack up over something so silly we can't help but laugh with him. His laugh is such a wonderful sound.