Wednesday, May 29, 2013

Don't Be Like Me

This post is one that I have wanted to write for a long time. I wanted to write it for myself, but mostly for others whom it might help. I know I am not the only mother who has had this struggle. But the fear of what people would think has kept the words locked up in my mind until now. This will be the most difficult post I have ever and probably will ever write. And perhaps it will be the most difficult post for many to read, as very few of my family and friends know the battle I worked so hard to hide, and overcame 5 years ago. 

This last Christmas I celebrated 5 years of sobriety. I am an alcoholic. I haven't had a drop of alcohol in 5 years, but I still carry that title because I know with every fiber of my being that I have no control when it comes to the bottle. I will always be an alcoholic because of the way I used it to medicate my pain. The tears are spilling onto the keyboard as I write these words and read them out loud to myself. But there is a freedom that comes from shining the light on something so ugly.

I used to say that I would never ever be a drinker. I wasn't one of "those" people. I had too much self control. My Christian upbringing would keep me on the straight and narrow. I didn't touch the stuff until after I was 21, unlike most of my friends who had dabbled in it much sooner. I was a waitress when I tried it the first time and it was no big deal. It did not take control over my life right away. I did the usual college drinking after work with friends. Looking back, I probably enjoyed it more than I should have, but I was able to not drink for years at a time with no problem at all. I got married and started a family without giving alcohol a thought to be quite honest.  

Alcohol did not touch my lips again until a friends wedding. I was under a tremendous amount of stress. Andrew had just been diagnosed 2 months prior, and we were in the midst of trying to figure out what Autism was and how to help him. I was at a loss. He was beating up on me daily. Literally. Therapies were not working. They seemed to be making him more angry. I would come home from sessions with bruises and scratch marks on my arms, and bloodied lips from him headbutting me as I tried to keep him from throwing himself on the ground and getting hurt. I was so weak. So when I was offered a glass of wine during the rehearsal dinner, I gladly took it. I had no idea then what that one action would start.

Now let me make one thing clear. I do not think that people who enjoy having a drink or 2 are alcoholics. There is absolutely nothing wrong with that. If you drink because you love trying different wines, or you order drinks when you go out to dinner, or you like a cold beer with your nachos....that is not what I am talking about. I have friends who are part of wine clubs, or will have a drink with dinner nightly. No problem. The problem doesn't come in the type of drink, or the amount even. It comes in the "why". I drank as a coping mechanism. I drank because I was in so much pain, and I didn't know how to deal with it.

The fall into relying on alcohol to give me relief was slow at first. A glass of wine here and there. But it manifested quickly into a problem that I was not willing to look at. I would look forward in desperation to the end of the day when I could have that shot of vodka....or 3. I didn't drink because I liked the taste. I liked the warm burn down my throat. The tingly feeling in my fingers. The fact that the pain and grief in my mind would slowly disappear and I wouldn't have to think about what I was dealing with on a daily basis. And I stupidly justified it by telling myself that I was a more relaxed wife and mother with a drink or 2 in me. That was the biggest lie ever. My drinking went from one or 2 drinks at the end of the day after Andrew was asleep, to a shot here and there after 4pm when I knew I was home for the rest of the day. The bottle moved from the kitchen in sight of my husband, to the closet in our room. I didn't want him to know how much I was drinking of course, and this was the easiest way to hide it.

My time of medicating myself with alcohol only lasted about a year, but by the end of it I was completely out of control. It culminated in me drinking too much on Christmas Eve and finding myself coming to in the ER with my husband by my side and a doctor asking me stern questions about how much alcohol I had drank. I denied having more than a couple drinks of course and my wonderful husband was so worried about me and had no idea at this point how deep my addiction had gone. He thought I had perhaps accidentally doubled up on my anti-depressant or something of the like. He was completely blindsided and to this day I feel so sorry for what I put him through that night.

I sobered up enough by the time I got home and continued to deny the reality of the situation. We went to sleep. I woke up with a terrible hangover and was sick all day. Bryan waited until I was feeling better and then proceeded to try to talk to me about what was going on. He also presented me with evidence of why he had even taken me to the ER in the first place. A fleece sleeper that had been worn by my son the night before. It had my vomit all over it from me throwing up on him as I tried to rock him to sleep. That was rock bottom. Oh the pain! The shame! The reality of how far I had slipped while trying to do it all and be everything for everyone while not taking care of myself. My heart broke in a way that it had never before. That was the first day of my new life.

Immediately after the new year began, I went to my first Celebrate Recovery meeting. It is a Christian 12 step program. Bryan was adamant about me going and I had no room or reason to argue with him. I was so nervous. Luckily there were so many people there, I was able to slip in pretty much unnoticed. But it didn't last long. They talked about their intense step classes that were starting a couple weeks later and I knew that I needed to make a commitment to attend every single Wednesday of the 9.5 month course. The class started out with 33 ladies and by the time graduation came and the 12 steps were completed, there were only 11 ladies left. Recovery is a terribly hard road. The not drinking was only part of the struggle. Facing the reasons behind the addiction are much more difficult. The first 3 months of sobriety were the most unbearable by far. The physical need for alcohol was gone pretty quickly but the mental addiction had a death grip on my self-control. Every single time I went to the store to get groceries, I had to call my sponsor, or my husband. Someone needed to talk me through the store so that I wouldn't go down the liquor aisle and loose all of my willpower. Vodka was my coping mechanism, and I hadn't figured out a new one yet. I needed to ask for help from others to get past those desperate moments. Those who know me know how hard it is for me to ask for help. Getting clean was a humbling experience indeed.

I remember the moment that the desire to drink went away for at least a short time. It was about 3-4 months into the program. We were at Step 4. By now over half of the women in my group had dropped out. This is the time where most people who are going to quit, do. Step 4 calls for us to take a moral inventory of ourselves. The hardest step by far. It is critical in the healing process. I remember filling out the chapter for the week and it was time to go around the circle and share our answers. We were to talk about guilt. About the What Ifs we say to ourselves. It was my turn, and what came out of my mouth surprised even me. It wasn't what I had written. I said," I feel like it is my fault my son has Autism.What if I hadn't had to get that root canal when I was pregnant? What if I hadn't eaten so much tuna? What if I hadn't vaccinated him? I was supposed to protect him and I didn't. What if I caused my son to regress into Autism?" In that moment, I felt 1000lbs lighter. It was the first moment since Christmas that I did not want a drink. I admitted out loud what had been eating away at my soul for years. And it felt good. I still struggle with those thoughts a lot, especially with having 2 kids on the spectrum now. But they don't control me anymore. I can push those thoughts away by giving myself grace, instead of reaching for the bottle. 

I have a special place in my heart for those suffering from addiction. Most of the time it comes from a place of terrible pain and suffering. Loss, abuse, abandonment, etc. Addiction is usually just a way people deal with pain that they believe they cannot handle any other way. My heart aches for them. I know from my own experience how easy it is to slip into a pattern that you never ever would have imagined you would had you not experienced such pain. 

Why am I writing this to a bunch of strangers? Because I don't want you to me like me. Don't be full of pride. Don't be so strong that you aren't willing to ask for help when you need to. Asking for help is not a sign of weakness (I am still learning this). Accept help when it is offered, even if you didn't ask. 

Don't be like me. Realize that no one is perfect and everyone has their weaknesses. You don't have to be Super Mom, Super Dad, Super Spouse, or Super Person. You are doing yourself a disservice by putting that much pressure on yourself. 

Don't be like me. You can't control everything that happens around you. You do the best you can, and then you have to let go and realize that life will take the turns it will. 

And this last one is especially for parents of special needs kiddos. Some deal with it well, some do not. Make sure you get time to yourself, or with friends, or your spouse to refill your emotional tank. Our job is tough. It is life long. If you don't take care of yourself, you leave yourself open to unhealthy ways of stress management. I can obviously say this from personal experience. You deserve breaks. Your child will survive without you for a few hours. You're health is as important as meeting their needs. You can't help them, if you don't help yourself. 

Don't ignore that voice in your head telling you that you are reaching your breaking point.

Don't make the same mistakes I made.

Don't be like me. 

Monday, May 27, 2013

Tired Rant

School breaks have always been the most difficult thing for Drew. Now it is even harder with a brother at home that is desperately trying to communicate and repeating phrases over and over. It is driving him off the cliff and he has absolutely no ability to cope with it. Headphones aren't working. James doesn't understand how to use a quieter voice. And I refuse to make James stop talking. That would not be fair to him. He needs to learn to communicate and I never want to stifle his voice.

The only thing we can do is split the kids up and one of us leave the house with one of them. It is not fair. I want family time. I want to be with my husband who I don't see much during the week. We just want to sit on the couch and watch a movie together. Or all go to the park and watch the kids play happily while we sit on a bench and watch from afar. Talking about our plans for summer vacation and all of the fun things we will get to do. This is not our reality.

Our reality is just too depressing sometimes to discuss. Yes, we have fun times. Times where due to very meticulous planning, everything falls into place and works out exactly as we need it to so that Drew has a good day. This is not the norm however. I wish it was. I cannot plan every single second of every single day. No wonder I have a control issue. My son thinks that I can dictate everything that happens to him all day long. Sounds, weather, etc. And I do my best to do that as it is what he desperately needs. But it is so hard to plan every single minute of the day. And God forbid that something is on his schedule that I can't do after all cause let's face happens! But he doesn't understand that. He is rigid, and his moods rely 100% on everything going perfectly during the day.

I am tired. Tired of planning everything. I am done. Today we are just staying home and cleaning the garage, patio, and organizing the inside of the house. Andrew is going to hate it. He has already had 2 meltdowns before 10am. It's gonna get ugly. But I rarely can get anything done around here because of Andrew's major problem with downtime and the inability to entertain himself. So today I am doing what I need to do. He'll survive. And at least I will feel better at the end of the day when I look around our tiny little living space and see that it is clean. For a few precious minutes at least. 

Thursday, May 23, 2013

Loneliness and Isolation

There were so many things that I was told when we decided to start a family. So much advice about what to do, what not to do, what to buy, etc. All kinds of advice that was wanted and unwanted. You know what I mean. Everyone has some tidbit of advice that they feel they must share with you when they find out that you are expecting. But not one person ever said that I would be lonely.

Well I am. So much more lonely than I care to admit most of the time. I know that all parents feel this way to some extent. Having to be home with the kids on a Friday night instead of at their favorite restaurant with their spouse. Not being able to do anything at the spur of the moment because you have to get a babysitter, or your are nursing and you have to keep the baby with you. Etc. But that is not the type of loneliness I am talking about.

I am talking about the loneliness that comes from being at the mercy of your child's inability to be in the world. Being stuck in the house for days on end because your son refuses to go out. And believe me, it is not worth the fight to drag him out, because he has a reason why he can't handle the outside world. He may be going through a cycle of severe sound sensitivity. He might be having social anxiety. He may not be able to sit in the car without screaming because his little brother is saying the same thing over and over and it is driving him insane.

For a long time, Drew went through a phase where he would not go into anyone's house without having a full blown, anxiety ridden meltdown. Even our closest friends who he knew well.....he would not set foot in their house. In fact, if I drove down a residential street, Drew would say "Mama back, Mama back" over and over again. It was his way of saying "I am not getting out of this car." And the times we forced him to go over to these was a huge nightmare. Our friends can tell you. He would not calm down the entire time we were in their homes. He we so full of anxiety, you could see it all over his face. He was shaky. Inconsolible. Hitting us, hitting himself. Doing anything he could to show us that he could not handle the situation we were putting him in.

Bryan and I have only left Drew overnight one night in his whole life. He's almost 9 years old. I had never missed his bedtime until the day I went into labor with his brother when he was a month shy of 6 years old. Andrew needs stability. He needs structure and routine. And we can't just have anyone watch him. He is mostly non-verbal. He needs to be cared for by people who understand him. Who have been around him enough to be able to meet his needs without Drew being able to express them. We can have our parents watch him and they are more than happy to do it, but they don't live locally so it doesn't happen as often as we would like. Yes, there is respite companies. But after having incompetent people care for him, I just can't bring myself to trust them again.

We feel isolated much of the time. Right now Andrew is going through a phase where he wants to go out....but he only wants to go to stores or restaurants. This is good exposure for him, but it is no less lonely for us. We don't get to have that companionship and connection with other people that we need in our lives. We still haven't been able to set foot in our best friend's home. And they have been our best friends since Andrew was 2. Luckily, they are so wonderful and come to our home as often as they can just because they love to be with us. We are blessed to have them, and other friends of ours who are willing to meet us where we are at.

We push Drew as much as we can to put him in social situations so that he can learn necessary skills, but we are many times limited with what we can do without pushing him too far. There is a specific line that we must not cross, or the experience changes from a learning experience, to a traumatic experience full of anxiety and self-injurious behavior. We suffer for it, but more importantly he suffers from it. And he remembers everything. So going back to the place that caused the negative reaction is just asking for the same response again.

You know how parents joke that going to the grocery store without the kids is like a vacation? Well it is true. I get to talk to an adult in the check out line for 30 seconds, which is great because it may be the only adult conversation I get in a week's time. The other day I had to meet someone from Craigslist at the mechanic because we were planning on buying their car and had to get it checked out first. We dropped of the car and then walked to a local cafe and sat down for an hour and had breakfast. We ate, and talked, and it was so nice I didn't want the mechanic to call and say the car was ready. Even though I didn't know her, it didn't matter. It was just nice to connect with another person and have a meal out (which is a rare thing as well).

I cherish those times. They are rare. They breathe life back into my exhausted mind. They get me through the drought until the next time I get the opportunity to fill my social tank.

Monday, May 20, 2013

Tragic Loss

Kids and adults on the Autism Spectrum are often prone to wandering. Around 49% to be more exact. Parents often have to take extra measures to ensure that their children don't escape from the home unnoticed. Many of these kids are also very good escape artists and can manipulate locks, windows, and they are highly determined to get where they want to go. They have no sense of danger and safety, and many are drawn to bodies of water.

This last week, three more precious children with Autism lost their lives. Their families and friends are heartbroken. No one should ever have to lose a child. And to lose one in this manner is so devastating. Even more devastating, is the comments that the public and the media are making....vilifying the parents for not watching their children more closely. To these people I say, "if you haven't lived it, you have no idea!"

I know so many families with kids on the spectrum that have had those moments. Where they turned away for a mere moment, and that was all it took. Their child was gone. Off on their own adventure. Not understanding the dangers that were right around the corner. It is the most terrifying experience. Many of these kids are non-verbal, and will not respond to their names if called. I have one of those children. Though Andrew knows his name, he will not respond verbally if I call to him. I have been relatively lucky and Andrew has not wandered away from our home. However, I remember the terror Bryan and I experienced when he wandered away at a huge furniture store called IKEA.

Anyone who has been to this store knows how big it is. The layout makes it very easy to get lost in the winding path. There are a lot of places to hide, and hundreds and hundreds of people walking in big groups through the large rooms. We were walking along and turned to find Andrew was gone. Terrified is an understatement. Bryan and I split up and looked for him for about 10 minutes. When we ran into each other and locked eyes after that 10 minutes and realized that neither one of us had found him, we became hysterical. Andrew won't respond verbally no matter how many times I call him. And I am his mother. Also, he would go with anyone who took his hand and tried to lead him away. He just doesn't have that sense of danger and fear. And if someone offered him ice cream. Forget it. We would never see him again. We watch him as closely as we can, but it only takes a second to loose sight of a wandering child. Luckily, after a couple more minutes, Bryan found him stimming in between the hanging rugs with one of his stuffed animals. I have never been so relieved to hear my name called over the loudspeaker because I knew that Bryan was with him since Andrew doesn't even know my name to tell someone. Believe me, it is one of our goals for him to learn how to answer those very important safety questions.

I am so thankful that he has not wandered near a body of water, but that doesn't mean he wont. Andrew is very drawn to water. He loves lakes, creeks, the ocean, and pools. He doesn't know how to swim. He doesn't have enough upper body strength to pull himself out of a pool if he falls in. And he has fallen in a pool. Luckily we were right nearby. If we hadn't been, he would certainly have drowned in moments.

Shame on those who question these parents. It is no one's fault when something like this happens. It is a horrible, tragic accident. It just happens. It may have happened many times before, but the parents were able to find them before it was too late. These families need sympathy, prayers, and they need others to understand that this is a problem that is part of the Autism diagnosis, as well as some with Down Syndrome, Alzheimers, and other mental illnesses. These parents are doing the best they can to keep their children safe. I can't even imagine the guilt they are putting on themselves every moment of every day since their child disappeared. Imagine not being able to even use the bathroom without worrying that your 8 year old will wander off. Unless you live this life every single day, you have no idea the great lengths we go through to make sure this never happens to our children. But we are not perfect. We don't have complete control over another human being and their choices. We take precautions, teach, and pray that it is enough to keep them safe. Sometimes it is not enough.

Send your prayers, positive thoughts, and love to the families of Mikaela Lynch, Drew Howell, Owen Black, and all of the other unnamed families that have lost their children due to wandering. No blame. No guilt. Just support, understanding, and love. And take the time to read some other wonderful posts below from many other bloggers honoring the memory of these precious children today. Outpouring of Love

Tuesday, May 14, 2013

Lesson Learned

Andrew loves to take pictures of everything. I mean everything. Every food he eats before he eats it. Every place we go before walking through the doors. Random people he walks by on the street. Etc. He has over 3000 pictures on his iPod touch and I rarely go through them because they are his and I want him to feel like he has something he can control in a world where he has very little. He even wears his iPod to school, and his speech therapist will sometimes email a picture he has taken to herself so that she can print a picture of it to use as a lesson. 

However I should go through his pictures more often. Because every once in a while he can capture something with his iPod that he shouldn't. Some are minor things, and some are major. Like the picture he took at Big 5 Sporting Goods a couple weeks ago of all the rifles and shotguns they had mounted on the wall. Or the picture he took of himself peeing while the pee was midstream. Or worse, the picture he took of me going to the bathroom in the porta potty at the beach. Let's not forget the picture of Dada sleeping without his blanket. I could go on and on.  

It would have been funny if I could have posted the pictures here, but due to their inappropriate nature, I will just let you use your imagination. Wait, that could be worse. OK.... I will post the gun picture, and the picture he took right before he started peeing. 

Lesson learned. I will be checking his picture roll when I make his daily schedules. But if you beg, I may save some juicy ones to share at a later date. And to our better watch out when you enter our home. Drew may catch you in an awkward moment. :)

Friday, May 10, 2013

Forming A Bond

We knew that when we decided to have a second child that it would be a hard transition for Drew. We had no idea how hard. Andrew had been an only child for almost 6 years. All of the attention was on him. I was working with him constantly. Engaging him. Giving him every second of my attention. I was his #1 support. The one person besides his dad who understood him. We were each others world. Connected at the hip. Andrew was my shadow. I could do nothing without him beside me.

So when James's "birth day" came, we put into motion the intricate plan we had for months. It would be the first time I had ever left Andrew overnight. I knew I would be in the hospital for 24 hours at the most. I needed to be back home for Andrew to feel safe. Changes in routine are hell for him. This was no exception. He had a rough night, not getting his bedtime story with Mama like he normally did.

Luckily the birth went off without a hitch, and James and I were indeed ready to come home at the 24 hour mark. Bryan and Drew came to pick us up at the hospital. Andrew was terrified. He didn't know what was happening. This was before we knew how important social stories were. We could have prepared him better if we had made a picture story for him, instead of just reading him "You're a big brother now" over and over. He walked into the hospital room, didn't even notice James, and began pulling my hand. He wanted out of there asap. We scrambled getting our things together and got checked out as quick as possible. We loaded the boys in the car and drove home to our new life that none of us were prepared for.

I will never ever forget what happened when we got out of the car at the apartment. We got Andrew out first and then pulled James out and began to head upstairs. Andrew wouldn't move. We turned around and said "come on Andrew, let's go home". Andrew looked at James and then looked up as if he was looking towards the heavens and let out the most gut wrenching, heartbreaking cry I had ever heard. At that moment he knew that we were bringing this "thing" home and his life would never be the same. Thus began the hardest 6 months since he regressed into Autism.

You know those pictures of siblings holding their little newborn sister or brother in the hospital? Kissing their cheeks and looking so proud that mom and dad let them hold them all by themselves. Yeah, that was not our life. When people saw me with James and found out I had an older son, they would always ask "Does he love being a big brother?" Or "I bet you have a wonderful little helper on your hands". Talk about ripping my heart out. I have no pictures of Andrew and James together until James was at least 2 months old. Drew did his best to ignore him and would not come near him unless it was to hit him because all his sounds were hurting his sensitive ears. Until this one.

And this one.

This was the first time Andrew seemed to acknowledge his brothers exsistance. He isn't even touching James, but touching the monkey pacifier that caught his attention for some reason. I didn't care why, I was just grateful to get my boys in the same vicinity for the first time in their lives where Andrew wasn't screaming and covering his ears and hitting James across the backseat of the car to get him to stop crying. It was a huge milestone to say the least.

Forming a bond is not always an easy thing. Even typical siblings have love/hate relationships a lot of the time. But with Andrew it was different. He just didn't feel a desire to be around James. James had disrupted his world that had up until that point been so predictable. He would not engage at all. Which was so hard because James has loved his brother since day one. He has always wanted to be near him. Always wanted to do what Andrew was doing. He sees Andrew like any little brother sees their big brother. He wants to be like him. To do what Andrew does.

I have worked so hard since day one to foster a bond between my two precious boys. You start small. Like giving something to Andrew that is highly preferred and then placing James near him and the object. Andrew needed to get used to James being in his space. And he needed to learn to tolerate it. At first it started like this.

And then it turned into this.

And this

And finally this

I have said many times that the iPad is the best invention ever. Well it is. It began the process of bringing two people together. As time passed, Andrew began allowing James in his space more often. We were able to move on from the iPad to other highly preferred activities. Like this. Of course being allowed to pour water on James's head with the neti pot helped.

And what is more highly motivating than ice cream? Notice the unique placement.

Andrew started to initiate play with James. This picture below was one of my proudest moments. Watching Andrew push James on the swing.

We were getting there. But as James got older, he wanted to play with Andrew. Something that Andrew doesn't know how to do. He doesn't have the language or the pretend play skills. We had to figure out something they could do together that would make James feel as though Andrew was playing with him and giving him that attention. Something that was effortless. Something that was natural and not forced on them. Enter the trampoline.

We purchased the trampoline before James could walk. Drew wasn't even sure about it at first, but over time it gave him the input he needed in his body to help regulate him. Also it gave him the exercise and the muscle strengthening that was so beneficial for him since he couldn't ride a bike or a scooter. He learned to love it, and would jump on it every day for long periods of time.

James loved watching Drew on the trampoline. He of course wanted to get on it right away. He would crawl on it while Andrew jumped. Andrew had to learn how to be careful around James while he was on it, and it gave him more awareness of James. He seemed to like James's laugh, which was so infectious we would get the giggles just listening to him howl with laughter while Andrew bounced him around the trampoline. Sometimes we pair the trampoline with another highly preferred activity. Water balloons.

James actually learned to walk on the trampoline. I think he felt safer falling down on a bouncy surface. He would walk on the trampoline while Drew jumped. After some time, he learned to jump. Every time Drew would come near him, jumping in a circle around the trampoline, James would get so happy. It was and still is the most direct attention that James gets from Andrew. When they are jumping together on the trampoline, they are in the same world. Enjoying the same thing. If James hears Andrew jumping on the trampoline, he drops whatever he is doing to run out there and join him. It is their time. And often they want me on there too.

We started trying to teach Andrew "Ring Around The Rosie" a long time ago using the trampoline. Activities like this are difficult for him. There are steps involved. Words to learn. Movements to coordinate. James would want to join in, but Andrew wouldn't allow it. Maybe he didn't want to share me. Maybe he didn't know how to add a 3rd person to the game. However, a couple weeks ago Andrew allowed James to join in on the game. And finally yesterday Andrew said "Mama, Baby James, jump jump trampoline". He ran outside to the trampoline, waited until James and I were on in, and held out his hands and said "Ring Around The Rosie".

Breakthrough. Something that seems so small, but takes years in the making. These are the moments that make all the hard work worth it. These moments give me hope that as they grow, my boys will form a bond that will keep them together for a lifetime.

Sunday, May 5, 2013

Let Me Explain

I was at a playdate the other day with James and was having a conversation with a new friend who knows my kids are on the spectrum. She is so sweet, interested, and non-judgmental. I really enjoy her company. She has a child that is the same age as James. More on that later.

She told me that her husband's cousin just went through their son being diagnosed with Autism. He sound to me to be a lot like my older son. Classic Autism, regression, tantrums, behaviors, non-verbal, etc. This child in almost 2 years old. I immediately flashed back to that time with Drew. The most difficult time in my life hands down. She began to express frustration that the cousin doesn't want to come to their house anymore to let the kids play....that they really don't leave the house....that the father is depressed...etc. It was that moment I realized Autism awareness is important, but Autism understanding is even more critical.

We are now in the month of May. Autism Awareness month has ceased. But nothing is different. A child will continue to be diagnosed on the spectrum every 20 minutes of everyday. Many people know what Autism is, but most do not know what it is means to the family that is touched by it. They have no idea how it turns our whole world upside down and inside out. They don't know what we think, how we cope, and what we go through every moment of every day. They don't know how hard it is to do the things that are so simple for "typical" families to do. How could they? Unless you are living with Autism, you really have no idea. Let me shed some light.

My friends first comment was, "They never go anywhere anymore. They don't leave the house. They never want to come over" She didn't understand why. She was fine with their little boy and had no problem if he had behaviors or meltdowns at their home. I told her it was great she was so accepting, but the reason they don't want to come over probably has nothing to do with her. I then asked her how old her son is. She said her son is around the same age as their son. Bingo.

When Andrew regressed into Autism, we stopped leaving the house as well for a time. No play dates. No parks. We even saw our nieces and nephews less and less. Why? Two reasons. The first was that it was so difficult for Andrew to do anything without serious, violent meltdowns. We didn't know enough about Autism at the beginning to know how to cope with them so leaving the house was just not an option. Secondly, being around any children that were close to Drew's age was just so gut wrenching for us as parents. To see what our child can't do. To see what we lost. Most importantly, to see how easy it is for other children to learn, and thrive, and glide through every day life. It was just too much. It often still is. Not because we don't love and accept Andrew for who he is. But because we mourn for what could have been. Some people think that sounds wrong...even those in the Autism community. It is no less true.

The second thing my friend said with a level of annoyance was this. "The dad is so depressed. He says things like "my kid will never be able to open Christmas presents with all of his cousins on Christmas day like I did" and "he will never play soccer like I did". She talked about how he needed to just deal with the way things are, and move forward. That maybe if he just continues on and accepts their drastic turn in life, that he will feel better. Yes, and no.

I was told after Drew was diagnosed that I had to let go of my dreams for him and make new ones. I thought that was the worst thing someone could ever have said to me. I vowed I wouldn't do that. I thought it would be like I was giving up on my son. But they were right. When you are contemplating a family, you have all kinds of thoughts of what your life will be like. What your children will be like. Who they will grow up to become. You imagine their first day of kindergarten. School plays. Awana. Prom. Graduations. Weddings. Grandchildren. You think about all the things you did as a child that you can't wait to experience with them. Playing catch at the park. Coaching their baseball team. Sleep overs with all their friends. Birthday parties. You don't imagine that you may never get to experience any of those things with your child. That public places would be so overstimulating for them that they scream, throw themselves on the ground, and hit themselves over and over. That they may never have a friend because they are non-verbal and other kids are afraid of them. You don't think that they may never go to a regular school, get invited to birthday parties, and play on the playground with other kids. So when this becomes your reality, the last thing you want to do is be around other typical developing children who remind you every single moment that your child is so far behind and may never be able to do what those children can do so easily. Sometimes it takes the form of jealousy. Most of the time it is just pure, unadulterated, straight to your heart pain that drains the life out of you and makes you feel like never leaving the house again.

For the families that live with Autism every day....nothing comes easy. I am so used to our life that I don't realize how much more I have to do than others. I forget it isn't normal to have to dress your 8 year old, or assist them in the bathroom. I forget that 8 year olds can have conversations with their parents and tell them what is bothering them instead of having to guess while their child screams and hits themselves in the head. I forget that 8 year olds don't have to be watched every waking moment to make sure they don't wander off, or burn themselves, or smear feces on the walls. Most parents don't have to get up every night multiple times to change their 8 year olds wet sheets. I am used to it. It is our normal. But it is exhausting physically and emotionally. Our tanks are on empty most of the time .

The thing I think people misunderstand the that this is not just a phase of life for us. It is not just a moment in time like the newborn phase, or the terrible two's. It lasts a lifetime. Children with Autism grow up to be adults with Autism. There is no cure. Early intervention and therapies can help to a point, but the struggles will always be there. So when my friend made the comments she made, it was clear to me that she didn't grasp the fact that this child's father is depressed because he is dealing with something similar to the death of the child he knew...the child he dreamed of....and he is waking up to the reality that the future is unknown to him. I have never felt more out of control than I do being the mom to 2 kids on the spectrum. I can't plan...I can't guess what is coming...I can't even guide the boat where I want it to go. I am just along for the ride. A passenger trying my best to keep the boat afloat in stormy waters, and steering us away from danger as much as I can.

Friday, May 3, 2013

The Gift

This is a picture of a man I met on the street today. Our interaction has forever changed me. So much so that I felt compelled to come home and write a post so others can experience what I experienced. It is the kind of thing you just don't forget.

I see homeless people on the street everyday. I get asked for money often. So often that it becomes second nature to automatically come up with an excuse why I can't help them. I mean let's be honest. Most of the time we have no idea what a person is going to do with the money. If they really need it for the reasons they say they do. Etc. I walk speedily past them. Trying not to look at them so that they don't ask me for anything. If they do ask I always say "I'm sorry, but I don't carry cash". That is my go-to phrase.

Today was different. I was walking down the street in downtown Palo Alto. I had just gotten my hair cut and I was killing time window shopping until it was time to meet Bryan for lunch. As I was walking along I suddenly heard a voice say "Can someone get me some coffee?" I was the only one in the remote vicinity. I turned toward the voice and saw this man pictured above. He was looking at the ground. I said my usual catchphrase..."I'm sorry, I don't have any cash." The next words out of his mouth took me by surprise. "I have money." What? He proceeded to dig in his pocket and take out 2 crumpled dollar bills and said again "I have money, I just need someone to get it for me." His voice was quiet. Unsure. And still he would not look me in the eye for more than a second in between words. I was so taken aback by his request I must have paused for more than a couple of seconds as my brain tried to register what was happening.

When my words finally returned I said "Sure, I can do that." I asked him what he wanted me to get him and he said he just wanted a coffee from Starbucks or Peet's Coffee, which were both equal distance from where we were standing. He then stumbled over his words and said "I can walk with you if you want and wait outside, or I can wait here?" He seemed tired and I didn't want to make him walk more than he needed to so I told him I would go get it and bring it back to him. He said ok and handed me the 2 crumpled dollar bills. I smiled and said I would be right back.

My mind whirled as I walked to Starbucks to get him a grande drip coffee. It was almost 12 noon, and was slated to be over 90 degrees out. I had to get him some water to go with that coffee. He was weathered, and sunburned on his hands and face which were the only parts of him exposed as he was wearing a flannel long sleeve shirt and jeans. I purchased the coffee and asked for the biggest cup of ice water they had (which is of course the coveted Trenta size).

As I walked back to the man to give him his coffee and water I decided I had to get him something to eat. He watched me approach but as I got near him he lowered his head, put out his hands and took the coffee and water and said "Thank you." I asked him if I could get him something to eat. He sort of paused uncomfortably and I continued by saying "My husband just called and wants me to pick him up something to eat and I would love to get something for you too." He stumbled over his words a bit but said "Um, well, where are you going?" I told him I was going to the Gyro place down the street and pointed to it. He said "Well, yeah, ok, I can eat that." I asked if a lamb and beef gyro was ok and he said "Yeah, and a large coke!" I smiled and said ok. He asked if I wanted to walk back to give it to him or if he should walk closer to the restaurant to wait. I said I would come back and it was no problem.

I went to the restaurant to order the food and as I waited my mind whirled with all kinds of thoughts. The fact that this man had money but didn't want to buy the coffee himself just saddened me to my core. Did he have debilitating anxiety? Or perhaps he had been so mistreated by people for his looks and his situation that he couldn't stand the uncomfortable stares and comments anymore? I couldn't help but think about my Drew. The fact that he couldn't look me in the eye and the difficulty to get his words out smoothly; what if he has a neurological disorder or a mental illness as so many homeless people do? And finally, the guilt. Guilt that I have so much, and he has so little. Guilt that I wouldn't have even noticed him had he not spoken up in desperation. He has obviously been homeless for years. How many people walk by him everyday, acting as if he doesn't exist? Willing themselves not to look at him. Not wanting to see the pain in his eyes.

I was shaky. Sick really. I wanted to do more. But what could I do? I can't change his situation. I can't fix it. All I can really do is be kind. Give what I can. Pray. I felt so hopeless.

The food was ready and it was time to bring it to him and get on with the rest of my day. As I walked towards him I thought "I want a picture of him. I want to remember this moment. I want to remember him." As I got closer I snapped a photo with my phone...trying to make it look like I was just texting. I handed him the bag of food and the Coke. He thanked me. I asked him if there was anything else I could do for him. He said "No, I'll be fine." I told him to take care of himself and try to get out of the sun because it was going to be over 90 degrees in a couple hours. He said "Ok. I'll be alright." I wanted to hug him....ask his name....pray with him. But since he wouldn't look me in the eye I didn't want to make him more anxious or uncomfortable. So I just said "God Bless You" and started walking back to my car.

I suddenly felt like my feet weighed a hundred pounds. I was exhausted. My stomach ached. I finally got to my car and the tears came. My heart broke for that man. I cried as I prayed for him. That God would protect him. Provide for his needs. I prayed for whatever the situation was is in his life that has put him in the place he is in. I prayed for the Lord to put people in his path that can bless him and be blessed by him. And I prayed that he would come to know God.

As I drove to meet my husband for lunch, I realized how rich I am even in the midst of all the difficulty and battles I face every day. I don't ever want to forget that. And hopefully if I do, I will look at the picture of this man and be reminded of the gift he gave me today. The gift of sight. Of really seeing what is in front of me instead of my preconceived notions of people and their situations. The chance to step out of my comfort zone and make a connection with a stranger in an intimate way. 

What I did for him was nothing. 

What he gave me was priceless.