Wednesday, December 25, 2013

Six Years....Still A Battle

This day six years ago, I was at my rock bottom. I was cloudy headed, ashamed, embarrassed, and yet still in some denial as to the gravity of my addiction. I had spent the last year spiraling slowly out of control. Unable to deal with the pain of my son's diagnosis and the turn that my life had taken because of it. Alcohol had been my coping mechanism off and on for years to help me deal with pain from my past, but this was the worst it had gotten.

On that morning my addiction and the consequences of it slapped me right in the face. There was no denying that it had taken over my life and I had lost all self control. It is amazing how quickly you can fall in the course of a year's time. My husband was hurt, and upset. Showing me my son's sleeper covered in vomit from me throwing up as I rocked him to sleep. Giving me an ultimatum. Get into recovery, or I could lose him and my son.  I thank The Lord that I was ready to say yes. That there was no denying anymore that he was right.

Now, six years later to the day, I woke up to the sweet chatter of my amazing 3 year old who I never thought I wanted because I was so fearful of the possibilities of having another child with Autism.

I woke up next to my husband who truly is my best friend and love of my life. The man who challenges me to be a better person through encouragement and praise even when I feel like I am a failure.

I woke up to my Andrew, who surprises me daily with the things he has accomplished and the hardships he has overcome that we never thought possible. His level of patience and endurance with the people of this world and their inability to understand him humbles me to my core.

All of this I would have missed, had I not made a choice to live differently that awful day 6 years ago.

It has been very hard. This year I have wanted to drink more times than I would care to admit. Especially these last couple months. They have been brutal. The trials I have endured have tested me and tempted me more than any of the years prior. Reminding me that I am only one drink away from being back where I was, even with so much time under my belt. It keeps me on my game. Ever vigilant to the triggers that have controlled me so many times in the past. It has required me to say no more often, establish more boundaries, and ask for help when I can't keep going on my own strength.

Every single day that I say no to the voice in my head telling me to take a drink, I win. I am alive. I am grateful for the second chance to grasp onto everything beautiful and wonderful in my life. Aware and present for the good and the bad. Nothing is more important than my sobriety. Because without it, I know that I would lose all that is precious to me in an instant. 

I thank God for giving me the strength to continue this battle. It's been six years. But in many ways, it is just the beginning. 
 



Monday, November 18, 2013

This is Autism Flashblog Submission

I made these months ago, but they seemed perfect for the flashblog. You can click the pictures to enlarge.

My perfect sons.

This is Autism.




Check out all the entries to the flashblog at http://thisisautismflashblog.blogspot.com/


Thursday, November 14, 2013

One Year

Today is a very special day. A very important day. Exactly one year ago at this very moment, I was anxiously waiting in the waiting room of Saint Mary's Medical Center in San Francisco as my husband was undergoing weight loss surgery. This was no ordinary weight loss procedure. This was a very extreme procedure called the Duodenal Switch. It is a procedure that is only done by a handful of doctors in the US. Along with reducing the stomach size, the surgeon also shortened the intestinal tract, removed the gall bladder, repaired a hernia, and biopsied the liver. It was a 4.5 hour surgery that ended up being 7 terrifying hours of my life. As each minute passed beyond the expected 4.5 to 5 hour time frame, I became more and more scared. Scared that my husband wouldn't wake up. Afraid there was some sort of complication. It was something that needed to be done, but that didn't make it less scary. 

When the doctor finally came to tell me he was in recovery I must have breathed the biggest sigh of relief the people in the next building could hear. Seeing my worry on my face, he made an exception and allowed me to come into the recovery room for a couple minutes just to see for myself that he was fine. Bryan was so out of it. He had been under for so long, that it was hard to wake him up. He told me later that he remembered hearing my voice and he knew at that moment that he was still alive and it was all OK. Of course to him, the surgery felt like a blink of the eye, but to me.....let's just say it took a few years off my life. 


The recovery process began and I can say without reservation that it was the most difficult 4 months of Bryan's life. The first month was sheer torture. There were even a couple moments where in his weakness and pain of it all he questioned if he made the right choice. He was so miserable. With the years of research we had done, we knew that recovery would be difficult, but you really have no idea until you are in it. Every smell made him gag. Eating was a chore that he had no desire to do. His gag reflex was unbelievable. He lost 50lbs in the first 3 weeks. He was dehydrated from having such a small stomach that couldn't fit food and water in it at the same time. His meals for the first month were a teaspoon of food at a time. That's it. Sound extreme? It was. 

His sutures were having trouble healing. It ended up he was allergic to the stitches and I had to remove them and pack his wounds twice a day for 12 weeks until they closed. He was off work for 2.5 months, and probably could have stood to have been home even longer, but he was able to slowly get back into daily routine. Finally at 4 months post surgery he began to feel like himself again. Oh, and did I mention that the day of his surgery was the same day I pulled Andrew out of his school? He was home for 4.5 months while we fought the district and waited for a spot to open up at the school of our choice. It was a very difficult time for all of us. But the rewards made it all worth it.

I have never been so proud of my husband. He made a choice. The bravest and most selfless choice. And he gave me the greatest gift of all. Him. Many more years of being with the most amazing man I have ever met. He gave his children the gift of being able to play more with them, and do things with them that he hadn't been able to do before. I don't have to worry about loosing him too soon due to poor health. He is the healthiest and the happiest he has ever been. He made a tremendous sacrifice.  He will have major food restrictions, and will have to take supplements every 4 hours for the rest of his life. He gave up his addiction to food so that he can be a better husband and father. So that he can live the life that he always wanted to live but was unable to attain. He took the hard road. Loosing weight on your own is hard, and doing it the way he did is just as difficult. I believe it is even harder. It is drastic. He took away his own freedom and comfort. And I have never been more proud and amazed by him. To date he has lost 165 lbs, which is no less that inspiring!

We both have struggled with addiction and struggled to overcome it. On my one year anniversary of sobriety, Bryan got me a gift. A ring. To remind me of the decision I made, and to celebrate my success. And last night I did the same. 


The front of the dog tag holds a Phoenix. The Phoenix holds great meaning for Bryan as it symbolizes new life and being reborn from the ashes of your old life. 


I had the back inscribed with the words "My chains are gone, I've been set free" and the date of his surgery. He chose to leave his old life behind and start a new path the day he walked through those hospital doors. And I want him to remember how strong he is and the person he has become because of it.

Last night I had the privilege of attending his support group with many others who have had and are waiting to have this surgery. I was able to sit beside my husband with our 2 kids on his one year anniversary of his new life and speak to the group about how truly proud I am of him. How his decision to have the surgery changed the course of all of our lives. It was an honor to be able to stand in that place, in that same cafeteria where I sat nervously a year ago waiting for him to come out of surgery, and share just how amazing my husband is. It was a night we will never forget. 

It was a crazy year full of so many changes. Bryan's surgery, fighting for a proper placement for Drew, and in the middle of it all, James was diagnosed with Autism as well. I can't believe I survived it. :) But I wouldn't change any of it. We are all on the path that we are supposed to be on, and I know that we will grow and thrive on our new journeys together.

Friday, November 8, 2013

The Tribe

Today was the fifth time in the last 2 months that someone from AT&T had to come out to work on our Internet issues. It has been a constant and annoying battle that has taken up way too much of my time. The last straw was Wednesday night when we needed to update the iPads to the new ios and it took over 4 hours to download the update. For each iPad. Unacceptable when you have a child who uses the iPad for their basic daily functions....like communication.

Needless to say I wasn't very optimistic when the first guy at 9am spent 10 minutes looking around and said he couldn't find the issue and had to call another tech to come look. Surprisingly though, the next technician came within a half hour. He asked me the usual questions so I went through the last 3 months of issues for him. He was nice enough and listened to my frustrated annoyance, with that "I've heard this before", "calm down" look on his face. He went out to his truck for a few minutes, and when he returned he asked me if I worked with someone with Autism. He must have seen my Autism Awareness sticker on the back of my ugly, gold swagger wagon. I proceeded to tell him about my boys. 

Immediately his face and demeanor changed. He went from a look of "just another call, couldn't care less" to THE look. You know the one I mean. Not the "I'm so sorry" look, or the look of fear. But the "I totally get it" look of admiration and first hand understanding of our situation. The look that you only get from another parent who is walking a similar path. All of a sudden, I wasn't just another annoying customer out to ruin his day. I was special. I was part of the tribe.

He told me that he is the father of 3 kids on the spectrum. His oldest is 20 years old, and his youngest is 9. That is all he had to say. We shared a moment. The kind of moment where you just look into the person's eyes and you know everything they want to say. An unspoken connection. He told me that he was going to give another tech the rest of his appointments, and make my house his last of the day so that he could have plenty of time to fix the issue that four other techs before him couldn't. He proceeded to spend almost 5 hours working on the problem. And true to his word, he did find the source of the problem and fixed it before his shift ended. 

Autism is hard. It has been a learning and growing experience for the last 7.5 years. I must say though, that the people that I have met through this process have made it so much better. What happened today isn't out of the ordinary. There seems to be an instant acceptance within our tribe. Not 100% of the time of course. But more often than not, when I meet someone with a loved one on the spectrum, there is an instant bond. Whether it is someone I meet during my trip to the grocery store, or the people I have connected with through my Facebook page or my blog, there is a real sense that we have each others back. Most times we exchange contact info and helpful information that we have learned. And even if we never see each other again, there is a level of respect and acceptance exchanged that is unparalleled. 

It is these moments, these connections, that get me through the toughest of days. They help me remember I am not alone, and give me faith in humanity when the world can be so judgmental. My tribe is my safe place to be who I am in any given moment. I can share the ups and downs of our situation and be met with countless others who understand and are there to offer support and kind words. Many of you live online and our paths will never pass in the real world, but your impact on my life and my ability to get through the tough days is monumental.

You are my tribe, and I am grateful.



Thursday, October 24, 2013

I Have Failed

The world may never think our kids are enough. Society may think they aren't smart enough, or friendly enough. There will always be those who believe that our kids should be stronger, or faster at learning. That they should know better and be able to handle everything life throws at them. There will always be people who will minimize their accomplishments and find only the negatives in their existence. We can't change the way the world treats them, but we can make sure that we as their parents are always their safe place to fall. The place where every piece of who they are is loved and accepted with no expectations. It is our job to show them that they are not a burden, but a blessing.

I am ashamed to say I have failed my son in this area on countless occasions. I have been unfair. Pushed too hard. Expected too much to quick. Punished him for doing things or not doing things that he cannot control. I have not taken the time and energy to slow down and try to understand his needs, and help him deal with what is going on around him. Worst of all, my mind has put limits on what I believe he can accomplish because of my inability to see what the future holds. Or maybe because of my lack of faith in him.

My stress, my unnecessary guilt, and I am sorry to admit...my resentment of the difficult life we live, have given way to a negative attitude. This is not the norm. But there are those weak moments that Andrew sees this side of me and I shudder to think of how it makes him feel about himself. I never want him to feel like he is the cause of any of my heartache. I am not trying hard enough to show him that he is amazing just as he is. Just as amazing as the young prodigies that society deems worthy of their praise and acknowledgement.

It is not us, but our kids who have to live every moment of every day with the struggles they have. They are the ones who work terribly hard to meet society's expectations of them. And when they are away from the glaring eyes of the world around them, they should be able to be who they are. Nothing more. Nothing less. They need to feel that no matter what they do, or are unable to do, that there is a place they can run where they will be loved unconditionally until they take their last breath.  And that perfect place is in the safety of our arms.

This is the Mom I need to work harder to be. This is where I have failed. I have fought, and advocated, and worked tirelessly for so long to get Andrew the help he needs. But in all that struggle I have lost the part of myself that relaxed and reveled in the beauty of who my son is. I have been too busy to appreciate the small moments. Too stressed out about how others are treating him to see that all he really needs is his Mama to be by his side. Cheering him on through all the good and bad days he has. Allowing him to express himself however he needs to in the moment, and helping him pick up the pieces afterward. It is not all about making his situation perfect. It is about walking the road with him, and helping him figure it all out in his own perfect time. 


Wednesday, September 25, 2013

Raindrops And Rainbows





I am not a "glass is half full" person. Far from it. I like to put on a good game face most of the time, but in reality I am a worrier, a pessimist, and I always imagine the worst case scenario. I don't know if it is the medical background in me or what. Maybe I just prefer to assume the worst so I can be pleasantly surprised if all goes better than expected. And let's face it. It is a way to protect myself from the gut wrenching pain of utter disappointment.

I have been this way for as long as I can remember, but in the last five years or so I have really worked on allowing myself to feel. Part of my recovery program from my alcohol addiction. Feeling the good and the bad. Which includes allowing myself to have hope. And having hope opens you up to pain when things don't go as you had hoped and prayed. 

I had hoped, prayed, and admittedly begged God to give me one child that wasn't on the spectrum. After years of praying it I really believed that He would answer my prayer in the way I wanted Him to. But He didn't. And I was devastated. Why? Why couldn't He do this for me? I wasn't asking much. I thought I knew what I couldn't handle...and having another child with special needs was not on the list.

Last year my father-in-law went into heart failure and we weren't sure he would make it. It was terrifying. He is an amazing man. Loving, gracious, and generous to a fault. He worked harder at that time than he did when he was actually working for a living. He was a chaplain. He volunteered at an Alzheimer's facility. He mentored men at risk coming out of jail. Why? Why him? Why then? Thank God he pulled through and his health is stable at this point. But at that time when we were in the thick of it, a million thoughts and emotions run through your head.

A couple of weeks ago when my Dad went into surgery for his cancer, I prayed that it hadn't spread. Prayed hard. We all did. I was so sure that they would be able to remove the cancer that day and that his cancer would be a distant memory by now. But that wasn't the case. It had spread. And now we wait for further testing followed by months and months of treatment. Why? Why did all of these terribly difficult and heartbreaking things happen?

We will never know. I don't pretend to know why God allows things to happen in our lives. He has the whole picture. I don't. I see in my selfishness what I want, and what I need, and I give Him a list of how best to go about orchestrating my life so that it fits my seemingly perfect expectations. Fortunately I am not the ultimate decider of my fate....or anyone's fate for that matter. I am not the perfect one. He is.

At the time of all of these difficulties, I failed to see the bigger picture. All I saw was the pain. The anger. The let down. The fear.  As time slowly passes, I see more. Maybe not the complete bigger picture that shows how these trial affected everyone they touched; but the little pieces of the picture that affected me. God reveals bits and pieces of His plan for my life over time. He doesn't do it all at once. Almost as though He waits until my heart is scabbed over enough to accept the little gifts within the pain.

I am so thankful we had James. Diagnosis and all. He is the happiest kid on the planet. Since the day he was diagnosed he has made great progress and has far surpassed the skills of his brother, which is awesome and heartbreaking at the same time. But more than that, he has added a joy and a specific healing to my heart. My guilt. Guilt that I caused Andrew's autism. That somehow I did something when I was pregnant or when he was an infant that sealed his fate. Too much tuna, dental work, epidural, vaccines; somehow I knew one of those things forced him to regress into autism. But then James came along. And I did everything differently. I mean everything. And yet, he has autism too. Though he is less affected, it is there. Despite the devastation that James would struggle more than I had hoped, him being diagnosed healed the part of me that thought it was my fault. It made me see that there was nothing I could have done either time to stop it from happening. That part of it was the gift amongst the pain.

The other blessing is that James will understand Andrew more than most. He will get his quirks. He will have a special window into Andrew's mind that even his dad and I won't have. Because he shares some of the struggles, he will have a connection with him that he may not have had otherwise. I pray that with bring them closer together as times passes. And that when the day comes that we are no longer here, James will be the best friend and advocate that Andrew could have. 

My father-in-law's health struggles are awful. They are unfair. They worried everyone around him. My husband was very affected by it all. He was scared for his dad, but also scared for himself. When a health crisis happens, it tends to force us to face our own mortality. Though I wish his dad didn't have to go through what he did, there was a gift in it for our family. It was the final push Bryan needed to take control of his health once and for all. He had been on the fence for years about weight loss surgery and when this circumstance came down the pipe, it forced him to make a choice. His choice changed our family's circumstances for the better. He went through all the avenues necessary to get the surgery scheduled (and it was a struggle I tell ya) and 8 months later it was done. I am so thankful that something so good came of something so awful.

Finally, my Dad's cancer. Many would say "how could there be a blessing in that". It is a current crisis, and a scary one at that. Cancer is terrible. I hate it to be quite honest. But good has come of it as well. My relationship with my dad has not always been great. Circumstances happen in life and in my case, I come from a broken home. There was a span of time that my dad was not actively in my life. In recent years since my kids came along, we have a better relationship. But the closeness was still missing. When my dad had surgery, I wanted to be there. I needed to be close to him so that I knew he would be OK. It is true that healing can come in the midst of trials. A barrier that was between us has been broken because of cancer. My dad has said some things to me in the last weeks and months that have healed my heart from years of childhood pain. I don't even think he knows it. But he is different. His battle and the attitude he has chosen to take because of it has spurred healing in me and has helped others in their own struggles. 

Cancer sucks. Health problems suck. And yes I will say it. Autism sucks. I am not thankful for these things. They are hardships that can drain us to our very core. Leaving nothing left to hold onto but our faith and our family and friends. But when you look closely....when you look from a different angle...you may just find the gifts among the pain. It doesn't happen when you are in the thick of the trial. But after time passes and the rain has left it's mark, the rainbows appear and the entire picture comes into view. And sometimes it's beauty makes the trial seem more bearable. It gives us a renewed strength and resolve to continue on despite our difficulties. 

I am not thankful for the hardships of this life. But I am thankful for the hidden gems that emerge after the torrential downpour. The rainbows that come after the rain.


Tuesday, September 17, 2013

Tried And True Part 3: Sleep

This post has taken me so much longer to write than the others in the series. Mostly because as many of us know, sleep changes often with our kids. We think we have it all figured out, and then it all changes in a moment. Because Andrew is 9 years old, we have been through it all with the sleep issues. From the beginning of his little life, his sleep has been disrupted. Sometimes things work, sometimes they don't. Or sometimes they work for a blissful time and then stop with no warning or cause. It is enough to drive even the strongest person batty. There are some things that have worked more often than not and therefore have made the list of Tried and True. 

The first thing that has been imperative in getting Andrew to not only go to sleep, but stay in his bed when he is awake, is his crib soother. Yes, he is 9 years old now. But he has always had a Fisher Price crib soother. You know those things that attach to the crib and light up and play music to sooth babies to sleep? Well, Andrew has always had one for comfort and I am not sure that will ever change. But hey, if it works, why mess with it?


The second thing that has been a golden standard to help him feel comfortable enough to go to sleep since he was 3 years old is his bed tent. Many kids love that enclosed feeling and Andrew is no exception. Ever since he was a baby, he liked to be confined to a small space. It made him feel safe, and less overwhelmed with the world around him. We have a bed from IKEA that has a tent that attaches to it. We go nowhere without it. Seriously. Camping, hotels, grandparents...etc. Any overnight stay requires the bed tent and whatever contraption we need to assemble it to any bed he will be sleeping in. It also helps on trips because he wakes up and what he sees around him is so familiar, that he goes back to sleep easier since he can't really see outside the tent arch.


The third thing and perhaps the most important is his weighted blanket.  Andrew has had weighted blankets since age 3. He started with a 6 lb one, then a 10 lb, and now he uses a 15 lb one. He has always been a big kid and loves deep pressure. When he is super dis-regulated, the weighted blanket really calms his body for sleep. It helps him feel where he is in regard to his environment. We did a ton of research on weighted blankets and the fillers and have always ordered ours from Salt of the Earth Weighted Gear. You can customize the fabric so that you can choose a pattern your child prefers. Andrew loves the ocean so we have always done an ocean themed one. There are different fillers to chose from as well. We have always gone with the fine grade river stone instead of the poly beads. It allows for less bulk as the weight goes up, and I have never had a problem with tearing or drying issues. They have held together wonderfully even with a lot of washes. The owner of the company is wonderful and they are great at answering any questions and helping you choose the exact weighted blanket for your needs. I highly recommend them.


Now lets talk about sleep supplements. We didn't try anything at all to help promote sleep until Andrew was 7 years old. He did not sleep more than 30 minutes at at time for years. As he has grown and is now 9...he has improved. But he still is up 3 to 4 hours a night often. We finally decided to try some natural supplements to see if they would help him fall asleep and sleep through the night more often. They don't work all the time and must be cycled as they lose effectiveness, but they do give some relief and help him sleep through a least part of the time. We cycle using Melatonin, 5HTP, Magnesium, GABA, and other natural herbs like Skullcap, lemon balm, and passionflower. Sometimes we only use one thing, sometimes a combo. His neurologist and pediatrician are aware of all of them and have signed off on their use as needed. We have seen no side effects yet and all have helped him for at least a short time.


Other supplements we use are probiotics, Magnesium, fish oil, and a good multivitamin. The Magnesium really seemed to help with sleep and that is the most recent thing we have tried. We currently have him off of all other sleep supplements. We also noticed that Andrew's meltdowns and behaviors decreased significantly when we cut out food dyes, artificial flavors, high fructose corn syrup, and chemical preservatives. He seemed more able to control his outbursts and was more regulated than he was when his diet included these things. Trader Joe's, Sprouts, and Fresh and Easy, and Whole Foods are definitely our go to stores to find foods without these ingredients.

Finally, Andrew has a lot of anxiety. As he is getting older (pre-puberty), it seems to be getting worse with bedtime. Since last November, he would not let me leave him alone to fall asleep. If I did, he would urinate in his bed. I was changing his bed up to 3 times a night. He knew if he peed, I would come in and change him and give him that attention he was seeking. But month after month, we couldn't get him to stop. Social stories didn't help. Waking him up to take him to the bathroom before he would normally wake and pee his bed didn't work. I was stuck in his room for an hour plus at the beginning of the night until he went to sleep, and then when he was up in the night for hours on end I was stuck either on his floor, or the family room, or getting up every hour to change him when he peed again. He refused to get out of bed to pee. He had grown out of all pull ups and I refused to put him in adult diapers, so he would be awake much longer than he would have if he wasn't wet and uncomfortable.

A week ago I had the idea of giving him a special nite nite iPod nano with music and very relaxing baby videos that he still enjoys today. iPods and music are very relaxing and highly preferred for him. The Nano has none of his pictures he takes and likes to edit or apps to play, so it is much less interesting then the iPod touch he used to have in the middle of the night when he was awake for hours and I wanted to catch a few winks. Immediately his anxiety drastically reduced as he was able to lay in bed with his iPod until he fell asleep. We remove the headphones and iPod from his bed after he is asleep and put them in the hallway outside of the bathroom. We kept telling him over and over again "pee pee toilet and then nite nite iPod" and he got it! When he wakes in the middle of the night, he gets up right away to find his iPod and he goes to the bathroom in the toilet. Then he goes back to bed and falls back asleep with his iPod and headphones much much quicker than he did when he was up hours on end laying in bed without the nite nite iPod. He is getting more sleep. I am getting more sleep. And most importantly, he is becoming more independent! Not to mention I have so much less laundry to do.

What I want you all to take from this post, especially the last paragraph, is that our kids are different. The typical rules of bedtime routine and sleep do not apply to them. We have got to think outside the box to try to find ways to help our kids that doctors, friends, and our parents never tried before. And sometimes they work! This last week has been the best week I have had in a very long time. I hope that our unconventional way of dealing with Andrew's sleep problems last for a long time to come. I love that he is not on any sleep supplements and he is doing better than he was when he was on them. Anxiety breaks through those things and dealing with the anxiety problem and giving him some control has helped solve some of his sleep problems. At least temporarily.




Friday, September 6, 2013

Fear and Faith

As I sit here in front of my computer screen, my mind reels from the events of the last few months. Life is hard. It is hard for everyone. We all have our own struggles. The battles we fight with ourselves. One of my biggest fears is fighting what we don't see coming. Like Autism, there is no exact cause, no way to know who it will touch, and no all out cure. Cancer.

Yesterday at 4:30am, I got in my car and drove a couple hours to the hospital of my birth. After insurance changes and mess up after mess up, my Dad was being prepped for surgery. In a couple hours we would know whether his cancer had spread to the surrounding lymph nodes or not. Waiting is not my strong suit. OK, I'll be honest. I am horrible at it! Having to wait since finding out in June that he had cancer to know if it could be removed completely has been a very difficult thing for me. 

I am a fixer. I am a logical thinker. The sooner we could get in there and have answers, the better. But the insurance companies had other plans. Loosing paperwork. Twice. Things kept getting in the way and pushing the date out further and further. My heart knows that everything works out the way it is supposed to and that God is in control. I truly believe that. But my mind.....my control issues....they think that somehow if  A, B, and C happen in my time frame that we can control the outcome. God is constantly working on this with me. 

My Dad has this concept down. I am sure that the diagnosis was shocking and that the fear is there, but stronger than the fear is the knowledge that God has a perfect plan for his life and a perfect way of implementing it. It's the people around him like me that are struggling with the what-if's and the shoulda coulda wouldas (sp). 

As we waited in the ICU waiting room, the clock seemed to have stopped. Time is not your friend when you are waiting for answers. As almost an hour and a half passed since surgery was to begin, we thought "Yes, the cancer must not have spread because they would have closed him up already and ceased surgery by now", which is what we were told would happen if it had been found in the lymph nodes. Not 2 minutes after we sighed a big sigh relief, the doctor came around the corner with the news that the cancer had spread and that they closed him up and he was in recovery. 

You know how in "Charlie Brown" his teacher has that echoing voice that sounds like it coming from a tunnel far away? That is how the doctor sounded to me in that waiting room. All the words after "cancer has spread to the lymph nodes" sounded like a jumbled mess in my brain. We went in to see Dad and he was still coming out of the anesthesia. Any ability I had to be able to hold it together and put my game face on was lost the moment I saw him in that state. My Dad has always been the strong one. I don't remember seeing him sick more than twice in my life. He never stops going and especially in the last decade he has been available at the drop of a hat whenever I ask.

I quickly left the room and found the nearest bathroom to hide in before the tears came. I am not a crier. I am too strong for my own good. Unemotional to a fault. It is so easy for me to hide how I truly feel. But not in that moment. I was on my knees in that bathroom and praying as the tears fell. I didn't pray for healing. I prayed for God's will to be done and His glory to be revealed in this trial. It is how I was raised. I am sure that as this process continues, I will be praying for healing, and for complete restoration of my Dad. Probably not just praying....probably some all out begging. But in that moment, I had to give it all over to the only one who has any power over our circumstances. Because I can't carry this one. It is too heavy for me. That is my Dad's prayer, and I am trying to make it mine.

The road ahead will not be easy. The treatments will be tiring, and extensive. But the outcome can still be a good one. The type of cancer he has is supposed to be slow growing, so hopefully we can get on top of it and stop it in it's tracks. Many lessons will be learned during this trial. My Dad is learning to slow down and let others care for him. Again, God is trying to teach me to be patient and wait. Two things that I am the absolute worst at. We all have to trust and rely on Him for strength, peace, and knowledge of what to do next. 

I am thankful for my faith. It has gotten me through so much, especially in the last 7 years. I am especially thankful for my parents raising me in the church and instilling those priorities in me at a young age. This is what my Dad wrote the night before his surgery:

"Thank you GOD for the trials you send us. Not for the "pain" in the midst of them, nor for the "joy" at the end of them, but for the "assurance" because of them. Sometimes to direct us, sometimes to correct us, but always because You love us, and always to give to us what is always best for us. THANK YOU GOD!"

Thank you Dad, for sharing your faith with others and believing in God's plan even in the midst of fear.





Wednesday, August 14, 2013

Guilty

I know people mean well when they say "You're a great Mom", and "I could never do what you do". But sometimes it brings up feeling of guilt for me. I am not super human. I don't have this insane ability to parent my children better than anyone else. Behind closed doors, I lose it. Often. More often than I would care to admit. 

Last night my almost 9 year old son urinated in his bed 4 times. Not while he was sleeping. He was awake. He did it because he wanted me to stay with him in his room and I wouldn't. I couldn't lay on his floor anymore waiting for him to fall asleep as I usually do. Because let's face it....if it gets him to sleep, I am willing to do it. But sometimes it takes hours to get him to go to sleep, and I want to do other things. So Andrew peed in his bed. Every time I left the room. We have tried so many things to stop this behavior. Talked to therapists, doctors, anyone who would listen. Nothing has worked. It's not like normal kids where we can threaten to take away his iPod and he stops. And believe me, we tried that.

Yelling definitely doesn't help, but I just can't stop myself sometimes. And he wants the response. Negative or positive doesn't matter. My yelling just reinforces his behavior. But I am human. I am exhausted. My washing machine has become my closest friend I spend hours a day with. He has also been peeing on our couch, our bed, etc. Out of nowhere. No reason behind it. He just doesn't get up to go to the bathroom. Unlike his nighttime behavior, there is no method to why he is urinating on the furniture. He will be perfectly happy just hanging out and suddenly he is in a puddle. No remorseful behavior. Just laughter. He has been mostly potty trained for a long time, but when he regresses, he looses all learned potty habits. Back to poop smearing again as well. 

We have no idea why he goes through these cycles, or when they will start or stop. And it is not as though they are short lived. This cycle started in November and is still going strong. This is just part of the struggles we deal with on a daily basis with him. So when people say "You're doing such an awesome job", I feel like I am living a lie. I don't feel like a great Mom. When I grabbed him behind the neck hard while directing him down the hall to go clean him up after one of the many pee episodes, I did not feel like a great Mom. I felt out of control.

I am not a great Mom. I am just a Mom. Trying to figure out how to raise a child who will never fully grow up. The days seem endless. As do the nights. I loose my patience. I get depressed. I feel trapped. Then something good happens to give me a single drop of hope to get me through.

Bryan and I are worn out. The moments we get to spend alone together are few and far between. Thankfully, our marriage is strong even when we ourselves are weak and have nothing to give to each other. We try to stay positive. But in the quiet moments when we are able to let go, the tears come to the surface. Only to be pushed down again until the next time. 

Don't get me wrong. I am thankful for the encouragement. I know that it comes from a truly wonderful place. But I am not Superwoman. I do what I have to because I don't have a choice. It is the life that I was given. I have the same weaknesses as everyone else. I mess up a lot. I need help. I need grace. I shouldn't be on any pedestal. I just do the best I can and I fall short often. 

Luckily, no one is usually around to see it. 


Thursday, August 8, 2013

My Son Is More

I love my blog. I love being able to share the highs and lows of having children with Autism. I love sharing their seemingly small accomplishments. I love telling others the things we have learned in this process. I think it is awesome to meet new parents on this journey and show them that it does get better.

But I worry that (especially regarding Andrew) all people see is Autism when they look at my son. That I am so vocal about Autism and advocating for my son's needs, that people fail to see that there is so much more to Andrew than his diagnosis.

He is like any typical child in so many ways.

He loves to run with the wind and lay in the grass.

 He loves watching the rain fall against the window.  

He loves going to the movies and sharing a tub of popcorn with Dada.

  He anxiously waits until winter when he can taste snow on his tongue once again.


He loves going to the zoo and the aquarium. He can name pretty much every animal he sees.


He loves people. Especially family. He will still crawl onto his 89 year old Great Grandpa's lap.


 He loves parties. Birthday parties. With cake and ice cream and lots of music.


He likes jumping on trampolines. The more kids on it the better.


 He likes Disney characters.


He loves to go camping and kayaking.


He loves swimming.


He loves the ocean. He will dig in the sand, build sandcastles, and run from the waves.


He loves snuggling.


He likes to draw.


He loves the holidays and all of the tradition that goes along with them.


 He likes superheroes. Especially ones made of Legos.


 Andrew also has many qualities that many people don't have. Thanks to Autism.

He will never judge another person by their status in life, the clothes they wear, or if they went to college or not.

He will never laugh at someone who has a disability.

He doesn't care if you are part of the in crowd, or more of a nerd at heart.

He won't laugh at your glasses, or freckles.

He does not lie. 

He doesn't try to be anyone but himself.

Once he accepts you into his world, he will always greet you with a smile.

He does not hold grudges against others for things they do wrong.

Contrary to popular beliefs about Autism, Andrew is completely aware of everything going on around him. Even though he is mostly non-verbal, he understands much of what we say. He does not stim all the time. The older he has gotten, the less he stims. And when he does it is usually because he is really happy. 

He doesn't spin anymore. He is not a savant, though he is very good at figuring out technology. He doesn't self injure unless he is very frustrated and we aren't meeting his needs. He is very affectionate. Almost overly so. He has empathy. He knows when someone is sad and tries to help them as much as possible.

Andrew is more. More than what the world assumes he is. He will accomplish more than what people think he is capable of. He is more like everyone else than people think he is. And yet, he has qualities that give him a wonderfully unique perspective on others and the environment around him. He will always have Autism and that may be what people measure him against.

But I promise you.

He is more.


Saturday, July 27, 2013

Tried and True part 2: Tools To Increase Communication And Decrease Frustration

The ability to communicate our wants and needs is probably the most significant thing we learn in early childhood. Imagine the frustration if no one, not even your parents could understand what you needed. If day after day every time you wanted something, or wanted to express yourself to someone else, you couldn't. Even worse, imagine if you couldn't understand what was being said to you. Like being in a foreign country where no one spoke your language and you were forced to walk through life not knowing what was going on around you. Not knowing what was coming next. Unable to transition from one task to the next because you couldn't understand the steps. Andrew refused to use any sign language except "eat" and "all done", so his ability to express himself without behaviors was almost non-existent.



This was Andrew's life before he was introduced to the Picture Exchange Communication System. PECS for short. This system is used as an augmentative and alternative way to communicate. Many children with Autism and other special needs are very visual learners. Andrew is no exception. As soon as he was diagnosed, we were told that he might respond to this form of communication, as he was completely non-verbal. I immediately proceeded to download the free version of the Boardmaker Program. It gave me access to over 900 widely used pictures that I could print, laminate, and cut into squares. The picture above is a sample of what the Boardmaker icons look like. Andrew made this "schedule" years ago. He wanted to do some really fun stuff this day. :) 


I spent days finding all the icons I needed, formatting them onto pages in 2 inch by 2 inch squares, printing them out in sheets, cutting each square, and laminating them, and cutting them again. Andrew used Boardmaker icons for years, until we decided he would benefit more from real picture icons instead of stick figures. He is so visual, and real pictures have so much more detail and color. You should have seen him when I made all these new icons. I mean, it was like Christmas to him. He was so happy that I was giving him new words. It was amazing. 



I took all of the icons that I had cut and laminated, and put them into a communication binder I made. All of the icons had Velcro on the back of them so they could be fixed to the binder over and over again. I would put the icons in order starting at the top and continuing down the side of the binder. Andrew could easily see what were doing for the day so that he would know what was coming next. He would move an icon into the All Done envelope to help him transition to the next thing. All of his icons were in a 2 inch thick full size binder at all times. The schedule below was the one we used on the day Andrew had to have his sleep study at the hospital.


Before we figured out that Andrew's frustration stemmed from his inability to communicate and be understood, he had so many aggressive and violent behaviors. It was constant. He was so upset and it manifested in terrible ways. However, once he understood the system we were trying to implement, he jumped in with both feet and never looked back. He loves his visual schedule more than anything else. We would have to take the binder every where we went. It fell apart more than once and I would have to make new ones often with sturdier material.We would loose icons often and they would have to be remade, but it was still the best way we had found to communicate.


Less than a year ago, we were able to slowly switch Andrew from his homemade communication book, to having his entire schedule on his iPod touch he wears around his neck. He is such a tech savvy child. He had become a whiz and the iPad, so learning how to use the iPod touch was pretty simple for him. I found an app called First Then Visual Schedule HD that allows me to put all of Andrew's icons and visual schedule in one place. I can take any picture from google images to make icons and put them right into his schedule as long as I have a wifi signal. It allows me to say the words in my voice so when he touches the icon he can hear the word. It also allows me to make a video of steps for him for more difficult tasks like brushing his teeth so that he can be told each step in the process.


This app has changed his life. It has opened up a whole new world for him. We use it all day every day. He always has it around his neck, so he has very little anxiety since he always knows what is happening. No more loosing icons and ransacking the house in the middle of the night looking for them. No more printing, laminating, and Velcro. No more binders. It has made my life so much easier. 


Perhaps the most significant change that has occurred in Andrew's life with respect to communication is the addition of an AAC device. After a very long process of getting assessed for the need for a device to help him communicate effectively, and trials with multiple devices, we found that Andrew responded the best to an iPad with an app called Touch Chat. It is a very intuitive program, and it will grow with him indefinitely. It provides the ability, like his scheduling app, to make your own icons with pictures downloaded from Google. I can make icons of every single place we go, every person we visit, every food he eats, etc. It has unlimited capabilities and speaks for him. See a video of him using it below:



He has only been using it since the beginning of March, and it has decreased so much frustration. Especially when he has been sick, and looses the minimal language he does have. Without his talker, he wouldn't have been able to tell us what he wants to eat or drink, or how he is feeling. He has learned to use the talker to tell us when he is mad, so it has decreased his self-injurious behaviors a lot. 

Coming up next. The final part of this 3 part series: Tried And True Part 3: How We Improved Andrew's Sleep.

 

Monday, July 15, 2013

Tried And True Part 1: 5 Tools We Use To Manage Behaviors

Over the years there have been many staples in our house that have been necessary for my son to function on a day to day basis. When he was younger, it was his stimmers. He had to have 2 identical items in his hands at all times. His favorite by far....Nintendo cases. Remember these?


Andrew had to have 2 cases with him everywhere we went, or he couldn't make it through the day. Luckily we had a stash of these from my husbands old video game collection...or we would have been in serious trouble when he threw one out the window on the freeway going 80 miles an hour. Or when he dropped one out of his stroller at the mall and after 45 minutes of searching....we had to give up and go home. 

He did grow out of the need for his Nintendo cases finally. However, there is a list of things we use every single day that he cannot live without.  This post will be part one of a three-part series of tried and true items and techniques to help with behaviors, communication, and sleep issues. I hope this series will be helpful to others who are trouble shooting how to help their kiddos. OK, let's talk about sensory tools to manage behaviors.



First. Noise blocking headphones and music headphones. Andrew has always been super sensitive to sound. He was unable to concentrate at school. He would keep his hands over his ears all day in an attempt to get some relief from the constant noise that made him so uncomfortable. Because of this discomfort, he would hit himself, yell, cry, and was unable to focus enough to function in the classroom or in the community. To give him some relief, we started training him to wear headphones at age 3.


He took to headphones quickly because we started him with over the ear headphones playing his favorite classical music. Once he realized that he could listen to music and block out his noisy environment at the same time, he was sold. The problem we ran into with the expensive noise canceling headphones was that he would chew on the cords and ruin them. It was much cheaper to go with ear buds for music and noise blocking headphones for when he was really sound sensitive. He uses them daily at school during certain activities, and at home when James is being too loud. They are also a must in restaurants and movie theaters, and allow him to participate in fun activities much more successfully. If this sounds like something that might help your child, the best place to find noise blocking headphones that block out 32 decibels of sound is Harbor Freight Tools or other home improvement stores. Also, if you search gun muffs on Amazon, there are many choices and they are inexpensive.



Next is the Chewy Tubes™. We have tried many different chewies, and the Chewy Tubes™ have been the best ones for us. Andrew has always been very orally fixated and needs a lot of input in his mouth. This spells disaster when he is putting lithium batteries, coins, and screws in his mouth when we aren't looking. To keep dangerous items out of his mouth as much as possible, we encourage him to use his chewy.


Other chewies have been torn to shreds, but we have had the same 4 Chewy Tubes™ for years and they still look brand new even with daily use. Andrew always has one hanging around his neck that he can put in his mouth at any moment. They are especially useful when his anxiety is at its peak. They also help him focus on difficult tasks. Much like how I used to chew on my pen cap during exams. :) Of course if your child is too young or you are concerned that wearing one around the neck is a choking hazard, I think you can attach it to a shirt with a makeshift clip. The best place to find this type of chewy is on Amazon. They sell them in singles by size, or you can buy a 4 pack of all different sizes to determine which one your child likes the most.


Along with his need for Chewy Tubes through the day, his sensory diet also includes access to his favorite music on his iPod Touch at all times. To give Andrew the ability to use the iPod whenever he needs it, we found a special case on Amazon (called the Survivor Case) that allowed us to string a cord through it and hang it around his neck. This really helps him feel he has some control and has vastly reduced his anxiety just knowing that he has it when he needs it. And it solved the problem of him putting it down and walking away when we were out in public. Replacing the lost iPod Touch once was enough.


Music is often used in conjunction with joint compressions and deep pressure squeezes at least every hour when he is awake. These 2 things have always been so helpful for him in regulating him and calming him down when he is having a sensory meltdown. When he was younger, the mix of a compression vest and classical music was the perfect cocktail for him. He would literally look drugged when these two things were put together. It would calm him instantly. This is still true today, though we haven't found a compression vest or weighted vest that works quite as well as squeezes due to his size, so we have become his vest when he needs deep input. A large beanbag to crash into also worked very well for years.


The final thing that helps a lot when Andrew is frustrated and can't regulate himself is exercise. However, he is unable to ride a bike or a scooter at this time due to motor planning and balance problems. And he is not a fan of playgrounds because of the noise. We had to find something that he could do safely. The best investment we ever made was our trampoline. He not only gets exercise, but he gets input in his whole body. And it relieves his anxiety and stress. Less stress and anxiety = decreased behaviors.


I realize that not everyone can get a trampoline. But I encourage you to find something that works for your child to give them that endorphin rush and meet those sensory needs. An obstacle course you create in your yard. Going for a walk and having them race you to the house 3 doors down (interval training). Get a scooter board and have them sit on it while you hold a long rope. Then have them pull themselves to you hand over hand. This requires work as well as motor planning, which can be great OT for our kiddos. Think of fun activities that don't seem like work to them, but require a lot of muscle use. They will most likely sleep better too. 

Next post will be Tried and True part 2: Tools To Increase Communication And Decrease Frustration.




Friday, July 12, 2013

The Beauty Of Acceptance

Seven years ago I started the hardest journey I would ever have to face. I went through all the phases of grief. Some people disagree and think it is downright wrong to grieve when your child is diagnosed with Autism. But I did. I still do every now and again. I had my idea of what life would be like when I had children. I had expectations of what my child would be doing. I believed he would be able to do anything he wanted. That the sky was the limit. It is normal to imagine the future with your unborn children. And it is perfectly healthy and normal for a person to grieve when that future you planned on is not the reality. So yes, I grieved. My husband grieved. And every time my son regresses, or when he hits himself over and over again and cries because he can't do the things that he wants to, I grieve again. I think it is a healthy way of dealing with the cards we have been dealt. I don't grieve him or who he is. I grieve the expectations and dreams I had that will not come to pass. I grieve the struggles he will always have.

In the 3 years after Drew was diagnosed, I had gone through some terribly hard struggles coming to terms with our new reality. Those first few years were the toughest. The learning curve was steep. The depression was great. My husband and I were just barely treading water. And we weren't connecting. We just had nothing left to give each other at the end of the day. The minimal sleep we were getting, combined with the therapies that seemed to be doing little more than showing us how steep our climb to help Drew had become was just too much to bear. I dealt with my feelings in unhealthy ways. So did he.
 

Healing and acceptance is a process. It does not happen overnight. But eventually the healing came through the support of others who share our journey, and finally finding a church that could meet Andrew's needs so that we could get our spiritual and emotional tank filled.
 

I decided in April of 2009 to memorialize my son and our journey with Autism in a tattoo. It was the final step in the grieving process for me. The final piece of acceptance and embracing the journey that changed me to my core.









Below is a journal entry I wrote when I had decided on the design:

I chose to represent my son as a sea turtle. Sea turtles are water creatures. Drew loves the water and would spend all day in it if I let him. They also retreat into their shell to escape the world and feel safe. This is not unlike my son, who often retreats into his own mind to cut himself off from others.

A sea turtle is considered a courageous creature because it makes progress only when it sticks its neck out, and moves forward with patient, steady flow in order to achieve the desired results. This is much like our children with Autism who must step out of their comfort zone to learn and tend to master things at a slower pace than those around them.

Sea turtles were thought by the Mayans to be associated with music. My son loves music and is at his happiest when music is playing for him.

The Autism puzzle piece design, which is the world's symbol for Autism awareness, is on the turtle's back. Drew will be carrying the weight of his Autism throughout his life, and will have to work that much harder to overcome his daily struggles with it. He will have times of overwhelming improvement and mastery, and times of regression where he will retreat into his shell and need time away from the judgement of the world.

In the tattoo, the turtle is out of his shell in a swimming motion, progressing through life in a courageous manner. This is how I will always see my son. He will always have Autism, but it is only a part of him. Same as with the turtle as the puzzle pieces are only on the shell.

There are 2 hearts that are negative space through the turtle's shell. My heart, and Drew's. Connected. Intertwined forever.


Rarely a day goes by that I don't get a comment from a random stranger about my tattoo. Wanting to know the meaning and saying how beautiful it is. I tell them what it means to me, and every time I do, my heart heals a little more with the awareness it is spreading. This is the beauty that came from embracing the journey that I had never planned on taking.