Tuesday, November 4, 2014

Dare To Believe

Life has been hard these last few months.

Very hard.

Unbelievably hard.

We have been thrown some huge curve balls. Ones we never expected. In an instant, everything changed. Our plans for our future were placed on hold. Don't get me wrong. I know we are lucky. I know we are blessed. And there are so many that are suffering so much more than we are. But when you are in the midst of trials, it is hard to see the bigger picture all the time.

We are human. We are weak. We sometimes do not see past our circumstances. We get angry. We lose faith. We get beaten down day after day and it is hard to see the end of the tunnel.

My amazing husband was injured at work back in May and has been struggling with pain and numbness in his arms, hands, and now feet. He has had one major surgery which required the removal of discs in his spine and the addition of bone grafts, plates, and screws to stabilize his spinal cord. He did not improve as expected and next week he has to go under the knife again for a second spine surgery to try to relieve the pressure on his spinal cord and surrounding nerves.

He is broken.

Physically and mentally.

When you are in that place, it is hard to find hope. It is hard to make any sense of why something like this happened to you. In an instant, he was robbed of his ability to care for his wife and children. He has been forced to sit in a chair most days while his body is working against him. Constant pain and an inability to sleep day after day has really taken its toll on him. He tries to hold it together, but a person can only take so much.

Yesterday Bryan and I had a conversation. About why God allows things to happen. Why He isn't healing Bryan. Why He isn't answering our prayers. Deep down I know that God always answers prayers. Sometimes the answer is just "Not now".

I have been holding it together for all of us. Barely. Through the injury, surgery, sickness, Drew's regression recently, and our beloved cat's death last week. I have been applying for jobs for months with absolutely no luck. It seems like one thing after another. I am normally a pretty unemotional person. Strong to a fault. A logical thinker. I just keep going. I have to.

Till today.

A song came on the radio. One that broke me down. Made me feel the pain. The exhaustion. The questions of why.

"Do you wonder why you have to feel the things that hurt you?
If there's a God who loves you, where is he now?
Or maybe there are things you can't see
And all those things are happening to bring a better ending
Someday, somehow you'll see. You'll see.

Would you dare, would you dare to believe
That you still have a reason to sing?
'Cause the pain that you've been feeling
It can't compare to the joy that's coming

So hold on, you gotta wait for the light
Press on and just fight the good fight
'Cause the pain that you've been feeling
It's just the hurt before the healing
Oh the pain that you've been feeling
It's just the dark before the morning"

I realized today that I have been angry, and tired, and felt alone in the midst of all of the trials lately. God reminded me that He does have a plan, and that I need to wait and trust that He has this. I am carrying the weight of a battle I can't fight. We have no control in this situation. But God does. Even if we don't see it. Even if His timing is not what we want. Even if His answer is "not now". 

It doesn't mean He isn't there.

It doesn't mean He doesn't care that we are hurting.

It means He has a plan that we can't see. The future is unknown. This is where faith comes into play. 

Most of the time we can look back on a time in our life that was hard and see the reasoning for it. We can find the positive in it. The lessons we learned from it. But in the present time of the trial we experience worry, fear, and endless questions.  

Rarely do I feel that God speaks directly to me in his still, small voice.  Maybe I am just not listening most of the time because I am always trying to do everything on my own.....in my own strength. Today was one of those rare times where I know He was trying to tell me something. 

"Trust me. Believe that I have something coming that is better than what you are dealing with in the present." 

Today I listened.

Friday, June 27, 2014

Crawling Out Of The Darkness

I know I disappeared there for a little while. Ok, for a long while. And not because of the kids, or a big family tragedy, or some other great excuse to explain why I have let my blog go by the wayside. 

There is a much less glamorous excuse for my absence. One that most people don't talk about. 

Mental illness. 

There, I said it. 

It is a stigma that is not spoken of much of the time for fear of people thinking you are crazy. Or weak. Or making up excuses to not have to deal with life's stresses.

I started having panic attacks last August. I didn't know what they were at the time. I didn't talk to my husband about it. Which in hindsight was stupid, because he has suffered from them for years and would have shed some light on what I was feeling.  

Life wasn't necessarily very stressful at the time. In fact, it had calmed down to a manageable level for the first time in like 2 years. Both boys were in good programs and therapies at school. My husband was healthy after having surgery and was doing better than he had in years. I had free time on my hands for the first time. 

After meeting with a therapist a couple months ago....she informed me that many times this is what happens with people like me. People who thrive on the chaos of life and work best when on the go all the time. Life was finally slowing down and I hit a wall. With no IEP's to fight or husband to care for, my mind didn't have anything particular to focus on.  

I not only started having major anxiety, I was also physically sick for weeks. Stomach pains daily. Headaches. Exhaustion. 

The worst was the worrisome thoughts. I have always been a worrier. I mean, with our life....who wouldn't be? But it was getting out of control. I would wake up in the night with racing thoughts about bad things happening to the kids that were out of my control. I wasn't sleeping. 

During the day I couldn't get anything done....even though my body felt like I was going a mile a minute. Like I had 10 cups of coffee even though I hadn't had any. There is nothing worse than that jittery feeling when you can't sit still and at the same time can't complete a task because you have no focus. 

Thankfully, in February I finally decided that I needed to get some help. I went to my primary care doctor and she administered some tests. My psychological stress/depression/anxiety scale was so far off the chart, that they sent me to Psychiatry immediately. I guess it was worse than I thought. 

After assessing all of my symptoms with a therapist and psychiatrist, I was diagnosed with severe GAD (Generalized Anxiety Disorder). The most poignant thing I learned about anxiety was the high rate of alcohol abuse among those who suffer from it. As you know from my history, this was a problem for me off and on for years in the past until I got sober. This made me realize even more how important it was for me to take this seriously. The last thing that I wanted to risk was a relapse. And I had honestly been battling the desire to drink for some time up to this point. 

I was asked if I would like to try a medication, or go on a strict exercise regime to deal with the anxiety. I opted for the exercise 6 days a week. Which worked for a month or so. Sort of. The anxiety was a bit better....but not the irritation and severe mood swings. I would go from fine to yelling at the kids for something so minimal. Not my finest moment for sure.

Those of you who know me know that I am not a fan of medication. I have no problem with other people taking medication....but it wasn't for me. I could deal with anything without western medicine. If there was a supplement or diet change I could make to fix something.....I would do that. 

Two months after trying the exercise regime, I had to admit defeat. It just wasn't enough. I went back to my therapist and told them that I needed to try medication. It was so hard for me to come to grips with. I have a serious problem with what I perceive to be weakness. And me admitting that I couldn't make myself well on my own was a tough pill to swallow. Literally. I was so anxious just going to that appointment. But I knew that the person I had become was not me. That I needed help to be able to function like I used to. Most of all, I wasn't being a good mother. 

I tried a medication called Buspirone for almost 2 months that unfortunately did not address my issues. And the side effects were difficult to handle. I was hopeful that it would work because it was supposed to be the medication with the least side effects.

Enter Zoloft. It has only been a week and a half, but the sun is coming out already. My anxiety is minimal and my worrisome thoughts are practically non-existent. I am sleeping much more soundly. Even my husband has noticed that I don't toss and turn at night anymore. 

My biggest irrational fear about taking an SSRI was that my personality would become all blah. Instead, I am just more even keel. I don't get angry at the drop of a hat anymore. I process what is going on, and I deal with it. I am not perfect by any means. I just feel more in control.

I haven't noticed any real side effects to speak of. I am still not at the full therapeutic dose. And I shouldn't feel the full effects of the medicine until I have been on it for at least 4 to 6 weeks. But so far so good, and I am grateful for some much needed relief. 

I learned a very real lesson through this. Medication is necessary and can be a life saver for so many. I never believed it for me, but now I see it within my own mind. I hope that medication along with therapy will continue to put me on the path to healing. 

This life will always be stressful. It will throw me for a loop now and then. But hopefully now I have the right tools to help me with the difficulties we face everyday.

Thursday, April 3, 2014

Don't Just Be Aware. Care.

April is Autism Awareness Month. Yesterday was World Autism Awareness Day. I was pretty quiet the whole day. I wanted to post something...but didn't really know what I wanted to say.

When Andrew was first diagnosed, I looked forward to April every year. Spreading awareness. Every day of the month I would share something about our daily life with him on my Facebook page. Wanting others to learn from us. To share our wealth of knowledge and hopefully change others viewpoint. As the years have passed....that changed. I am not completely sure why. 
Maybe because I share with people about my boys all the time. I don't just save it for one month of the year. I live it. Daily. I have nothing to hide and I am so proud of them. 
Maybe because there is more awareness now then there was 7 years ago. I feel like Autism is in the news all the time. Always a new study. Always a new idea about the cause. Always something. It is somewhat overwhelming. And painful. 
I don't look forward to April anymore. I have been thinking a lot about why. What changed? 
I am tired of awareness. I want more. Our kids deserve more. Awareness is the beginning. But if it never goes past that, then what have we accomplished really?
Don't just be aware. Care. The definition of the word "care" is as follows. "The provision of what is necessary for the health, welfare, maintenance, and protection of someone or something." Awareness is not enough. I want you to care. Caring demands action. When you care about something, you do whatever you can to help. 
Caring does not require money. There is so much that people can do to care for our kids who are struggling to get the help they need to navigate this difficult world we live in. 
Help your kids go through their room this month and find things that you don't need anymore. Donate books, puzzles, toys, and art supplies to a local special needs classroom. Call your church and see if they have a list of families with kids on the spectrum that have any needs you can fulfill.  Search out programs in your local community that serve children and adults with special needs and ask them if you can provide them any assistance or supplies. Donate that old iPad or iPod that you are replacing with the newest version to a child that may not have the ability to communicate and learn otherwise. You can see the immediate and life changing impact you can have when you help out on a personal level in your local community, instead of donating to a big organization.
Better yet are things you can do that don't require you to give anything monetary at all. For example, consider becoming a buddy to a kiddo at your church once a month so their parents can go to church together without worrying about the safety of their child. Or when you see a child at the park that seems a bit different, don't ignore them. Don't walk away. Say hello. Even if they don't look at you, they hear you. Trust me. Find their parent (who is probably hovering close-by as we tend to do) and strike up a conversation. Encourage your child to play with ours. Those seemingly little things are huge to me. There is nothing I want more than for my child to feel loved and accepted by others. Because so often, that is not the case. 
A month ago, our friend Jason had a birthday party that he invited us to. We have some wonderful friends, and Jason and his wife Heidi are 2 of the best. They love our boys. They show it in the little things they do that are big things to us. At Jason's party, Andrew wanted to go and play at a playground nearby and Jason left his friends and went and played with Drew. I am tearing up at this moment just thinking about it. And I wasn't even able to be at the party. I was stuck at home with James having a meltdown. But when Bryan came home and I asked him how the party went with Drew, this was the biggest thing that stood out. That little moment that meant the world to him. 
Give of yourself. Just a moment. A little bit of time to let that person young or old know that they matter. That they are important enough for you to want to interact with them. 
Most of all, if you do nothing else this month....please do one thing for me. Talk to your children. Ask them about the kids at school. About the child that seems a bit different than everyone else. Or in our case, ask them about the kids in the "special" class. Talk to them about Autism. About how to treat those people that are different than them. How to be kind and caring. Show them by your actions that they don't have to be afraid. You are their best teacher. 
Your kids are the ones that will be growing up with mine. They will be his peers as time flies by. They will be the ones that will be here after their dad and I are no longer on this earth. We need them to care, not just be aware of Autism. They have the ability to change other people's viewpoint about kids like mine. One kind action just because they want to be kind, can change the opinion of so many of their peers. They have the power to make my sons' lives better. And you can plant that seed for free. 
So this month and every day that follows, don't just be aware of Autism.

Monday, March 24, 2014

I'm Lucky

A couple weeks ago, a parent of a child in my son's class made a comment about his daughter that many people with Autistic kids would take offense to. He said, "I'm lucky, my daughter isn't Autistic, just speech delayed". He was talking to a friend of mine. A fellow mom of a child that does have Autism. And he knew it. 

My friends reaction was "So what....I'm not lucky?"

I love her already. 

But we did agree that he didn't mean it the way it sounded. He has an older child that has more developmental issues and so he knows how tough it can be.

I get this. My son Drew is significantly more affected by Autism than James and I am not going to lie....it is very hard sometimes. Did I pray that James would not have Autism when I was pregnant with him? Yes. Andrew has so many struggles and had I been given the choice...I would have moved mountains to make things easier for James. To bring him into a world that is less cruel than the one Andrew experiences every single day.

That said, I do not count myself or my kids as unlucky.

I say the world and the people in it that encounter my kids are lucky to be in their presence.


I'll tell you why.

Andrew has an innocence that so many loose as they grow up. He does not lie. He does not judge. His realness is refreshing in a world where you never truly know what someone thinks of you. He will give everyone he meets the same respect no matter what their circumstances. He is unbiased. I wish I could say the same for me.

James considers everyone his friend. Every person he walks by he says "Hi friend, how are you" and he really means it. It is not a script he replays over and over again. He will make you feel welcome no matter who you are. People are shocked that he does this. I hope it never changes. He has the gift of hospitality and that is something sorely needed in this world. 

I am lucky.

I will never have to wait up for Andrew to get home 2 hours late from a party and worry that he is safe. Or wonder if he has been in a car accident when he doesn't come home. I will never have to say goodbye to him as he goes off to war. He will always want and need me to comfort him when he is hurting. I will be the person he clings to when the world is scary and cold. 

I won't ever really have to say goodbye to Andrew. Because he will always be with us. I will get to experience his smile, love, and joy every single day of his life. 

I am lucky that James has Autism. He will understand his brother more than we can and he will be able to verbalize it. He will have a window into Drew's mind that we can't. James will grow up with an understanding and lack of fear of those who are different. He has a leg up on the rest of us. Best of both worlds really.

So even though our life can be hard at times, it is full of magical moments that so many take for granted. Our home boils over with laughter much more than sadness. With accomplishment more than difficulty. No milestone passes without a lot of happy dances, flapping, and high fives all around. Our walls can barely contain the love and joy, and those who enter it can feel it seep into their soul.

Sounds pretty lucky to me. 

Thursday, February 6, 2014

You Are Not Enough

Yes, I said it. But before you jump down my throat for saying it, let me explain.

When I started this Autism journey 7.5 years ago, I had this belief. I could "fix" my child. If I was the perfect parent, the perfect advocate, the perfect teacher, I could change his circumstances and make his life the best it could be. All on my own.

I was wrong.

This belief I had took me down roads that I wish it never would have. The guilt. The control issues. The unrealistic expectations of myself. All culminating in an out of control addiction to alcohol to deal with me being a failure. All because I thought I could do it all on my own.

You cant! You are not enough.

This is true of any parent. Not just parents of special needs children. I used to think that the saying "It takes a village..." was just a sentiment at best. But it is true. You are not a super hero. No one is. I had people telling me that I was super mom, and I believed it. So when it all crumbled around me I felt like I let everyone including my child down.

The truth of the matter is this. Our job as parents is to help our child navigate through the world. And this happens by putting people in their path to help them succeed. And we need to have faith in those people we put in their path. Not blind faith of course, but we must allow them to share in the responsibility of helping meet our child's needs.

This is not just teachers, therapists and doctors, but also partners. I had the hardest time giving my husband some of the control and care giving of Andrew when he was young. I was gonna do everything because I was the only one who knew how to do it right. You know where that got me? Therapy. I needed to believe that my husband could meet Andrew's needs. My husband needed me to believe in him. Because I didn't, he didn't believe in himself. And that is a tragedy. It actually caused Andrew to only want me and push his daddy away. I was in the way of their relationship because I had to have control. 

I am not proud of those years. They wrecked havoc on my marriage and myself. I am still learning to ask for help, as well as let others carry some of the weight of this journey for me. It is not easy for me. It is like a constant battle in my head. One part of me knows that I need to hand over some responsibility, and the other part of me tells me that I am being weak and sub par because I can't do it all.

Give yourself a break. You are not a super parent. You are just a human being and you have your limits. Delegating does not make you weak. Accepting help does not make you incapable. It makes you wise. Wise enough to know that there are other people out there that can contribute a lot to the raising of your child. People who have expertise that you don't.  People who want to touch your child's life and help you support them the best way possible.

You just need to let them.

You are not enough.

Sunday, February 2, 2014

Just For A Day

A couple years ago, Andrew bit into a very hot jalapeno pepper. I didn't know it at first.....but after watching him in the bathroom trying to rub something off his tongue with a towel and asking him frantically what was wrong, he finally in desperation said one word. Pepper. I then went through the house looking and found the tiniest bite out of a small red jalapeno pepper on the floor. He had curiously removed it from our CSA box and taken a little nibble. 

I was thrilled that he had used his words to communicate. It was the first, and one of the only times he has answered a question verbally. But I wanted to know how he felt. If he was in pain. How hot the pepper was. He couldn't communicate that. So I did the only thing I could do. I took a bite of the pepper. I immediately regretted it, but at least I knew how Andrew felt. I knew how long it would take for the pain to go away. It was the best I could do to to understand him. To be in his shoes for a brief couple moments.

I would give anything to be able to see the world how he sees it. With his unique vision and the way he processes everything around him. I wish I could see what he sees when he stares at the aquarium so intently....unable to break his gaze when I am trying to get his attention. I wish I could see the ocean through his unique perspective. Feel what he feels as he gazes at the waves and watches that piece of seaweed float by. I want to know why that one mailbox catches his eye each time we walk by it. Just for a day.

I would give anything to have his ears. To understand why certain sounds hurt him so much and how he feels inside when he looks like he is crawling out of his skin. I wish I could hear words the way he hears them. So that I could understand how he feels when he is unable to decipher the words he hears. I want to experience the anxiety and overwhelming feeling he feels when the words are coming at him so fast that he can't process it and screams and hits his head as hard as he can. Just for a day.

I wish I could hear music the way he hears it. It is the only time when he seems truly happy and comfortable in his skin. I want to feel as serene as he looks as he blocks the world away when his music is playing. I want to know if the notes are sharper, or if he sees the music with his eyes as well as hears it with his ears. Just for a day.

I would give anything to be in his body. To be able to experience what he does when he lays in the sand for hours at the beach....watching the sand fall through his fingers over and over again. To feel the comfort he receives from the deep pressure he seeks constantly throughout each day. I want to feel how uncomfortable he is when he cannot tell where his body is in regard to his environment. What goes through his head when he runs into someone hard just to get that input and the relief it must give him. Just for a day.

I want to know how what it's like not being able to sleep for hours on end during the night. I want to hear his thoughts that seem to jolt him up and won't let his body rest. I want to experience why he is happy one moment and crying the saddest elephant tears the next. Is it a painful memory, anxiety, fear, or is his body causing him discomfort? I wish I could take his place. Just for a day.

I wish I knew what he wants to tell me every time his eyes meet mine and he can't find the words he wants to say. He looks so sad sometimes. So defeated. I want to understand what it is like to be misunderstood by the people who are supposed to know him the most. Just for a day.

Because if I could be him for just one day, I could support him the way he deserves to be supported. I could understand his needs that much clearer. He would know that I get it, and he wouldn't have to try so hard to make me see. I wouldn't have to see that look in his eyes that tells me he has run out of ways to get me to understand his needs. I would see him fully. I would give anything for that opportunity.

Just for a day.

Thursday, January 23, 2014

I Am Ashamed

I am not a perfect parent. Far from it. I don't claim to be anything close. For a long time now, I have struggled and tried to overcome a serious flaw in my parenting. Yelling. I will not go into how it started, or how I became this way because frankly it doesn't matter. What I will say is that it is a terrible way to be with the kids. My tone is strong. My voice is brash. I don't mean it to be, but that is the way I have always been. I don't even need to yell to get my point across. I am strong, and controlling, and somewhat domineering. And I wish that I wasn't. In the last couple years I have been fighting this tendency in me. Many days I win. Some days I don't.

I thought there was no worse feeling in the world than making my child cry. There is something worse. When you go to yell and your child cringes away from you. Ever so slightly. Waiting for the eruption. I can't even begin to tell you the shame in that. I want my children to respect me. But I don't want them to fear me. Those are two very different things that too many people lump together. 

Andrew has an amazing memory. Amazing. And it is a great thing. But not in these instances. His body has an immediate and uncontrolled reaction when he sees my old pattern of anger surfacing. His eyes squint. His body cowers back in defense. Fear. You can see it. And it has been heartbreaking for me to realize in the last couple years. No matter if I stop myself at the last moment from reliving old patterns, he still has the same reaction. Waiting for me to explode. And it hurts me to my soul. It is the constant reminder that I need to keep trying to succeed in this battle within myself. I have to.

I am still trying to learn ways to control my outbursts. I am better than I used to be. But it is a constant struggle. It is like a button is pressed to start a chain reaction. I have a small window of time to break the code, and I am fighting within myself to find the right remedy to stop the countdown. I haven't found the perfect kill code yet. I am sure there isn't any one formula.

I can tell you that I am much better at beating the clock if I engage in steady exercise, get decent sleep (yeah, I am laughing at that one), and most of all, walk away. I don't need to win the battles if it takes me to that place I don't want to be. It is not about winning. It is about helping my kids get through the battles with as much understanding and as little scars as possible.

I won't give up. I will become the mom I desperately want to be. The mom I need to be. I have a choice. I can choose to fight the urge to react with every fiber of my being, or I can give into my unhealthy pattern.

I am not controlled by my past. 

None of us are. 

We choose. 

And I choose to change. 

So that one day, I won't see that look on my kids face. Ever again. 

Tuesday, January 7, 2014

Do Unto Others........

What is it about going shopping that turns people into insensitive animals?? I mean really, I want to know. It is like all of a sudden some people think it is an excuse to be an impatient, rude, disrespecting jerk. Costco is by far one of the worst places for this bad behavior. It's like they are in the race of their life. Being timed as they try to throw everything they need in massive carts with no care or concern of others around them. Especially not my kids.

Today at Costco, I encountered the rudest person yet. Drew was standing near me looking at the DVDs and a man came rushing through the aisle with his shopping cart. He yelled "move it kid" and I had to grab Drew out of the way to keep him from getting run down. Keep in mind that Andrew's back was turned to the man, and his full arm cast was completely visible to him. 

Usually I ignore these people who obviously don't have even a speck of courtesy as a fellow human being, but this time I snapped. Once Drew was safely out of harms way I loudly told the man not to talk to my son that way. He replied "I just said move kid". I replied angrily "did it occur to you that maybe he didn't hear you, and even if he had, you were moving so fast he wouldn't have even had time to move out of the way?!" "What is the matter with you?" "Be a human being!" He shrugged and said a quick sorry and started to walk away. As he shuffled off , I said "my son can't talk, and can't comprehend speech easily. So you saying something when his back is to you is completely unproductive."

This has nothing to do with Autism. This is about the society we live in. People have lost their decency. Their basic human nature. They have become entitled, and elitist, and have forgotten how to have any respect for each other. Frankly, I am sick of it. My kid doesn't need special treatment. He didn't know Andrew is Autistic. But I am pretty sure he could clearly see he was a human child. Not a dog. 

This is becoming more and more common. What happened to being kind? Treating others how we would want to be treated? It is a sad world we live in when encountering a friendly face is a rare occurence. It is sad when we are pleasantly surprised when someone holds the door for us instead of letting it slam in our faces. 

One reason I am grateful for Autism is that I have learned to be more compassionate, and kind, and patient with others. I have learned to slow down and see what is going on around me. To see people as people, not as inconveniences. 

Today reminded me that I never want to be like that man. I don't want to rush through life so fast that I miss the insignificant moments. The random conversations with the person behind me in line. The smile I get when I wave a thank you when someone lets in their lane of traffic. The people I meet that I never would have had I not taken a moment to say hello or give them a compliment on their scarf. 

No matter what you are going through in life, there is no excuse for mistreating a stranger. Be kind. Be patient. Be understanding. And above all, don't run people over with shopping carts.