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.

The New Baby Arrives

Rather than rewrite history, I just grabbed the post from my family blog that I've been keeping for quite some time. I just wanted to add a few comments. First, Holy Moly! I was huge!! Anyway, we were very fortunate to have the help of Jeremy's mother and my sister here when Jackson was born. I also get a lot of help from my surrogate family, my church. They brought us meals, offered to watch Braden, they were just amazing, and no matter where we move we know that our ward family will be there for us to help us out because we belong to such a service and family oriented church. Now, let me tell you a little bit about this little guy. He was a picky little thing from day one, especially about eating. I finally gave up trying to breastfeed at around three months because neither of us could take it anymore. Then we had to find a formula he liked. Oh my gosh, it took forever to find something he would take. He finally settled on similac soy and it had to be just the right temperature, or no dice. To this day, he has still never taken cold milk and he's still such a picky eater, that it sometimes drives both Jeremy and I nuts! Braden was very good with his new baby brother, and was very gentle with him (at first) which was one of my biggest worries. Things with Jackson were wonderful, feeding issues aside. He loved his swing, and he was good tempered and he LOVED his big brother. He and Braden had a special connection and Braden could always make him smile. Despite some of the issues we are dealing with now (we'll go into that later) Braden is still proud of his little brother and whenever we go anywhere he tells everyone "This is Jackson, he's my baby brother!" So the pictures and posts below are all taken and written right after Jackson was born.

 

 

Well, he's FINALLY here! JACKSON JAMES WEBER was born at 5:45am. He weighed 7lbs 14oz and was 20 1/2 inches long. (above - us right before leaving for the hospital to be induced)
I checked into the hospital to be induced at 5:00pm on Tuesday night. Grandma Francie and Aunt Sarah showed up at the hospital around 11pm. They put my epidural in around 2:30am and I slept for a little while until the doctor came in to break my water around 5:00am. After my water was broken, things happened VERY fast, almost too fast! They were literally scrambling to get things ready for the delivery because it came so quickly. the doc basically had time to check me, say "she's ready" and 4 contractions later, Jackson was here!
I couldn't believe how much hair he has! I was really surprised by that! He is so darn cute!

Getting wrapped up and of course getting the lovely goop in his eyes.

I finally get to hold this little guy that's been kicking me for months!

Proud daddy.

Proud Grandma.

Proud Aunt.

All cleaned up and back from the nursery.

Dressed and ready to go home from the hospital. (already holding his own binky)

Braden and Jackson meeting for the first time. Braden can't say "Jackson" so he calls him "Jaskin". Braden has done so great with his baby brother. He's very soft with him and asks where "Jaskin" is all the time. Aunt Sarah has been so great at keeping Braden busy and playing with him all the time so he doesn't feel left out. It felt so good to come home. It felt like we were in the hospital forever and we really missed Braden.

Braden holding Jackson for the first time. (He totally wouldn't look at the camera) Things have been going well since we came home. I'm recovering and hopefully Jackson is putting back some of the weight he lost in the hospital. (He was down to 7lbs 4oz when we left). We love just having him home and holding him. He's a very sweet baby. We've been SOOOOOO blessed and we are so grateful for BOTH of our children! We're also grateful for all the support and help we've gotten. I have some of the BEST visiting teachers and we have a GREAT ward. And Jeremy's mom and my sister have BOTH been life savers! We're so glad to finally have Jackson here and part of the family!

Adjustment Disorder and a New Baby on the Way

After moving to North Carolina we quickly realized that Braden was struggling with such a huge transition. We had taken him away from all of his daily routines and therapies and everyone he was used to. We didn't expect him to take it all like a champ, but we didn't expect what happened either. Does anyone know what "Adjustment Disorder" is? I didn't until the doctor told us that was why Braden was having so many behavioral issues and actually went backwards in his potty training. We practically had to start over on potty training him (not fun). We thought we had been making huge strides forward, and found ourselves falling straight back. We had chosen to move into an apartment, which turned out to be a poor decision for little Bella. Being a beagle, she needed a yard and room to run and follow her nose. Not to mention with Braden's behavior issues he was not being very nice to poor little Bella. We ended up finding a nice retired couple with a large backyard and lots of time to play with her. She would be much happier with them, so we said goodbye to our little Bella and I've decided that we will just have to be a no pet household until I feel like we're at a point where the boys (and myself) can handle it. (That may never happen.) Okay, so dealing with adjustment disorder, there's not much you can do but wait for him to adjust, which took him about a year.

I don't know what made us think we were ready to have another baby, but we just had "a feeling" it was the right time (I can hear you laughing through the computer). So, back to the fertility doctor we went. I really, really didn't want to have surgery again and couldn't really afford the downtime since I didn't have any family around to help with Braden anymore. We decided just to try the same drugs we had done with Braden and what do you know…it worked! We were going to have another little Weber in June of 2011. Was I concerned that this second baby would have autism? ABSOLUTELY! It scared me, because I knew more than one family who had more than one child with autism. There was only supposed to be a 12% chance of a sibling having it, but I've learned that statistics don't matter when God is involved (and he's ALWAYS involved). He can take a life or save a life no matter what the statistics say and he sends each spirit child of his wherever they're meant to go. I was pregnant with another little boy, which meant those chances increased by four times! I thought I was a veteran though and I had been through enough wars to take on another if it happened (this just shows you how naïve I was). I was still taking Braden to and from preschool everyday and he still loved getting out of his car seat.

Let me tell you a story of a day when I broke down (there have been several, but this one sticks). I had just picked Braden up from school and we were heading home. Braden gets out of his seat, so I know exactly what to do. I pull over and tell him we won't go anywhere until he is back in his seat. He promptly gets back in his seat and buckles up. I smile and am so proud of myself for how awesome I am at handling these situations. About two minutes later, he's out of his seat belt and in the back of the car (I drove a Rav4 so it was like a playground in the back) So, I pull over again and repeat what I said the last time. Things went much differently this time though. As I sat in the driver's seat refusing to go anywhere, parked on the side of the road in some little neighborhood, I waited for Braden to calm down. No dice this time. I had learned to try not to react to his antics because he would only get excited and continue the behavior so I was doing my best to ignore the flying objects that kept hitting me in the back of the head. When he ran out of "things" to throw, he got creative and decided to strip naked and in no time at all, the passenger seat was filled with assorted things and items of clothing (of course I wasn't going to throw his ammo back at him). I had a buck naked, wild child in the back of my car (with a woman gardening in her front yard across the street looking on and concerned, though, I'm not sure if she was concerned about me, or about Braden. Maybe both), who after running out of ammo, decided he was going to get some reaction from me at any cost. He pulled my hair, punched me in the back of the head, anything he could reach (I couldn't lean too far forward because I was pretty pregnant with Jackson. So, what did I do? I cried. I rested my forehead on the steering wheel and just cried (to Braden's delight). I was probably hormonal, but also I felt like I had no control over the situation at all and didn't know how to gain control. I finally called and woke Jeremy up and he had to come and help diffuse the situation and took Braden home in his car. I will never forget this experience because it taught me two things, first, I have a great husband, who is always willing to help when things get too overwhelming for me and I love him so, so much for that (it still happens). He's cool as a cucumber and doesn't really let his temper get the better of him like I do. I'm prone to take everything personally and when your own child is abusing you, it's nearly impossible not to take that personally. Second, I learned that they sell harnesses that will keep your child from getting out of their seat NO MATTER HOW HARD THEY TRY! (Thank you my dear sweet mother-in-law!)

 

(Braden with his new harness)

 

Were we really ready to add a baby to our family? Maybe not, but Heavenly Father had confidence in me I guess, at least I took my getting pregnant so easily (easy compared to the first time anyway) as a sign that he knew I was ready. I was scheduled to be induced in late June 2011.

Moving Across the Country

Jeremy got a job offer from a company in Raleigh, North Carolina. I had not even remembered that North Carolina was a state until the day he called me and said "Honey, I applied for a job in North Carolina." My response was, "Um…okay?" I immediately had to get on the computer to figure out where the heck NC was and then I realized it was about as far away as I could get from Arizona and my entire family. I stopped to pray about the decision and had another one of those moments where God talks directly to you (I'm beginning to realize those moments aren't quite as rare as I thought). The answer was "Yes, go to North Carolina." I didn't question it from that point and trusted that God knew what he was doing. Jeremy got the job, and was set to start working in March of 2010. Unfortunately, that would be leaving me alone in Arizona for about a month to pack the house, and get everything ready to move, while still keeping up Braden's busy therapy schedule… TIME OUT: I have to take a minute to give some major props to my sweet sister Sarah who basically moved in with me for that month to help out with Braden and help me get the house packed. Let me tell you, I can be…shall we say, particular (okay, I'm  a control freak if you haven't figured that out by now) about how I pack stuff. But, she put up with me and I supplied her (and myself) with daily trips to sonic and our favorite wings from Venezia (I miss those) and we somehow survived!

Saying Goodbye to our families was hard, but I had no idea at the time how much I would end up missing them. We had never lived more than twenty miles from them before. I was excited to get out of the desert and live somewhere that actually has seasons, and real trees. I had planned everything out; the move, getting Braden into school, contacted the state to find out about the process of applying for therapy services, and I knew it would all go exactly as I planned. How is it that I have still not learned that things never go as planned?

Moving went like this: Jeremy and I in our car with Braden and our puppy, Bella, followed by a very large rented truck driven by Jeremy's brother, Brian. I'm pretty sure three days of the trip were spent driving through Texas. We had to stop about every three hours to change diapers, and let Bella do her business and clean up any mess she had made in the meantime. Thankfully, Braden loves being in the car, but we discovered on our trip that he also loves staying at hotels. Note that I did not say sleeping at hotels. I'm not sure any of us (including poor little Bella, who had to stay in the car because the hotel didn't allow pets) got much sleep. Braden's vocabulary was pretty basic, but he recognized shapes and had names for his favorite places; Wal-mart = Star, Target = Circle and now, Holiday Inn Express = Square. Every time we would drive by one he would say he wanted to sleep at "Square" it took us a minute to figure that one out until we actually looked at the logo of the hotel. We finally made it after about four days I think. Several people from our new ward showed up to help get us moved in. It was all fun and exciting until we were settled and life began again.

I was completely in awe of the beauty of NC and all of the trees! There are so many trees and there is so much green during spring and summer that it actually took me a few weeks to get used to seeing it. I loved it! I still love the beauty of it. We would spend hours driving around aimlessly through the countryside. It's a good thing we invested in a GPS system though, because you can't find anything without one. There are no straight roads, and the trees are lovely, but they block everything from view, so even with GPS you don't know you're there till you've almost passed your destination. It was just amazing to us. I was so used to the straight square grid set up of Mesa, that I wondered why they had set up a city without a straight road in it (seriously, I'm not exaggerating). We had lots of fun exploring the area and especially knowing we were only about a two-hour drive from the beach, but it was time to get Braden into school.

Thank goodness I came here with a diagnosis and a confirmation diagnosis, and a complete history of his services (I was anal about keeping documentation on everything and this time, it really paid off). I showed up at the school district offices with my gigantic binder full of documentation on Braden's medical, and therapy history. They made copies of what they needed and thankfully we didn't have to go through more evaluations when we got here. (I had grown to hate evaluations because we had done SO many.) The other blessing was that I already had an IEP in place (and a copy of it) for him, so they had to take that and use it. At this point I realized that ALL STATES ARE NOT EQUAL in their treatment of children with disabilities such as autism. I thought I had done enough research, but I really, really didn't do enough. The school districts here are done by county, not by city and the county we moved into is ginormous! (I've come to learn that's not a good thing.) Getting him into school wasn't extremely difficult, but the thing that completely blew me away was how they handled the transportation of special needs children. When I asked how it worked they said "Oh he'll ride in a cab." (I pictured a yellow cab) and the thought of just tossing Braden (barely four-years old) into the back and hoping he made it to school. I asked for clarification on that one. They said that they hire "transportation companies" who hire drivers (I'm guessing they get minimum wage) who drive SUV's and transport several special needs children to their school. I was not really comforted by their explanation, but it was better than the thought of throwing my child into the back of a yellow cab.

So, time came for Braden to start school. I took him on his first day and I met his teacher for the first time. She seemed nice enough. He was in what was called a "Cross Categorical" class They called it CCK for short (I have no idea what the K stands for). Cross categorical means that Braden would be with all sorts of disabled children, not just children with autism. There were children with Downs Syndrome and children who had severe learning disabilities. I wasn't allowed to ask about the other children's disabilities because of HIPPA. Braden's school was about 7 miles away from our apartment where we decided to stay until we could settle on where we wanted to buy a house. The day before he was supposed to start school, I got phone calls from his two drivers (he would have a different one picking him up and bringing him home). I warned both drivers that Braden liked to get out of his seat and roam the car sometimes, so they would have to keep an eye on him. They didn't seem worried. He would be in a car seat, so I assume they thought he wouldn't be able to get out of that. They clearly underestimated him. Things seemed to be going ok at first. His teacher sent home daily notes letting me know how Braden's day was and I had not had any complaints from the drivers. My issue was that they didn't always show up at the same time, so I had no idea when to have him ready or when to start worrying that he wasn't home yet. I was trusting these people with my whole universe and if something happened to him…

I got a phone call from Braden's teacher one day. She said that Braden was fine, but they had to file a report with the police because of behavior she observed from his driver. This is what I was told had happened. Braden had apparently gotten out of his car seat and made his way into the back of the SUV without the driver noticing, though it was beyond my comprehension how that happened. In the back of the SUV, Braden discovered a can of car wax and immediately opened it and went to town. He got it all over the car and all over himself. I'm just grateful he didn't eat it. When the "Cab" made it to school and the driver got out to get the children out he realized what Braden had done. With the teacher standing there, he proceeded to grab Braden by the arms forcefully and yell at him in his face telling him he was stupid and no wonder his parents had so much trouble with him. His teacher intervened and removed Braden from the cab, and took him inside and directly to the principal's office where they called the transportation company and informed them they would not allow that driver to pick up any more of their students (this doesn't mean he wouldn't be transporting other students to other schools). They then called the police to file a report. When she told me all this, I was shocked and ticked off as any parent would be. I immediately called the transportation company to demand his termination. He should not have been transporting ANY students, period. They basically told me they would do their own internal audit of the incident and his behavior; he was never fired. I began driving Braden to and from school myself after that incident.

I had no idea that my troubles were only beginning.