Sunday, August 26, 2018

Check On Your Strong Friend


Seems like an easy question huh.

Not for me.

I have lived the majority of my life pushing away my feelings. They didn't matter. They weren't acknowledged. I never learned how to deal with them.

That catches up with you eventually.

I grew up needing to be as close to perfect as I could be to survive. I was a people pleaser. I craved the acceptance of others around me. My family was broken, and I didn't have a safe space to be me. To learn how to cope with hurt, loss, rejection, abandonment, and disappointment.

I became very independent very quickly. By 17 I was working 2 jobs after school. Sometimes not getting home till 2 am after end of shift.

At 18 I moved away from home and never looked back. I paid my way through college on my own. I lived in a studio apartment paying my own rent. I worked hard. I didn't need anyone. I could do it all. Or so I thought.

I graduated college, and soon after got married to my boyfriend of 6 years. We were blessed with our first child a year and a half later.

Life got hard. Andrew didn't sleep. Ever. But I could handle it. I got this far on my own steam. I could handle this too.

Then Andrew was diagnosed with Autism. I went into action. That's what I do. If there's a problem, I can fix it. It's logical. I didn't allow myself to feel anything about it. Feelings take time. Time I didn't have.

I pushed them away by taking care of everyone else's needs for years and years. Told myself I'm strong enough. Feelings aren't important. They don't serve a purpose. I can just push through them.

I pushed them down with alcohol. That was a destructive path. Then I got sober.

I pushed them down with exercise. I got in the best shape of my life. Life was still hard but I was controlling something.

Then our second child was diagnosed.

There was no time to mourn. No time for feelings. Now I had 2 kids that were counting on me. I pushed down the pain with therapy appointments, research, and denial that I needed some support too.

Soon after, my husband had 3 surgeries in 2 years. A horrible turn of fate that forced him to retire. He needed me to take care of him too. So I did. Happily. I would do whatever it took. I moved a mile a minute all day long. No time to reflect. No time for feelings.

We were losing insurance so I had to go back to work after 10 years at home. It was nerve racking but I jumped in. I had to. In 3 years I was promoted 4 times and tripled my salary so we could afford to live on one income and still save for Drew's lifelong care when we are gone.

I did what it took. Not realizing the toll that it was taking on my mind. Not noticing that I was about to break from the decades of being out of touch with my mind, my pain, my needs, and my limitations.

I started having panic attacks. Often. My brain had changed. All the trauma I had been thru and lack of healthy tools to manage it caused a drastic change in my ability to cope.

I made poor choices. Trying to find some escape from the weight that I had put on my own shoulders. Unhealthy outlets. Bad influences. I knew that I was walking down a path that wasn't right for me.....but feeling the feelings was not an option for me.

Then I broke my leg. And everything that I was running from.....I couldn't anymore. All my coping mechanisms were gone. I couldn't do Roller Derby, which had become my one healthy outlet. It was taken from me. I couldn't take care of myself. I couldn't take care of my family. I had to rely on others to do for me. I needed my husband to help me do the most basic tasks. I couldn't run away anymore.

I broke. Completely. My mind and my soul. I slipped into the darkest place I have ever been. All the things I had locked away in the depths of my mind forced their way out. I was alone with my thoughts. I couldn't quiet them. I contemplated things that I never thought I would. I needed the waterfall of feelings to stop. Or at least needed some way to not drown under the weight of them.

I admitted I needed help. Which if you know me, you know it is the hardest thing for me to do. I found a therapist. I found a medicine that stabilized my mind. And I started to get to work.

It's hard.

It will take a long, long time to unravel the decades of not allowing myself to feel my feelings. My first step is stopping throughout the day to think about how I feel. You'd be amazed at how hard that it is for me. I actually do not know the difference between my anger, sadness, disappointment, fear, resentment, etc. I spent so many years telling myself that my feelings served no purpose, I can't even decipher what I am feeling when I try. 

I am only at the start of this journey. My therapist is going slow with me. Being sure not to open too many boxes at once so I don't fall off the cliff again. I feel like a child trying to learn to walk for the first time. I don't know where to step, what to hold on to, and if I can make it 10 feet without falling down.

But if I don't do this, I won't make it. I won't become the person that I want to be. That I need to be. For me.

So I will keep going. One shaky step at a time. I will set limits for myself. I will say no. I will notice when I am not OK. I will ask for help. I will let my husband be my partner and my support. I will learn to be vulnerable. I will do the work. It will get harder before it gets easier. But even if it takes years, it's worth it. The alternative is not an option.

I prided myself on my strength, but in the end it was the one thing that kept me from getting help.

Check on your quiet friends
Check on your funny friends
Check on your creative friends
Check on your emotional friends.

Check on your strong friends.



Monday, August 24, 2015

Because Of You

Today at 6:55am marked 11 years since you made your grand entrance into the world and changed our lives forever. I never could have been prepared for the journey that began all those years ago. I did what all moms do when they are pregnant. I imagined what you would look like. Would you have blond hair like Daddy or brown hair like Mommy? Would your eyes be blue? Would you be lucky enough to get Daddy's dimples? And I thought about who you would become. What sport you would play or musical instrument you would master. Never ending questions circled my mind as I dreamt of all the possibilities. Little did I know that your life would have more of an impact on my life and the world than I could have imagined. 


Many parents think about what they can do to help mold their child into the person they want them to be. You, my sweet one, haven't given me that opportunity. What you have given me is so much more. You have been gradually turning me into a person I can be proud of. Slowly weeding out my bad qualities. Bringing to the surface the ugly parts of myself and forcing me to have to change them. Has it been pretty? No. Growing up and maturing rarely is. In fact it is easier to stay stagnant. To do the same things that you have always done because that is where you are comfortable. But you pushed me out of my comfort zone. 



When you regressed into Autism, I fell back on an old habit of comfort to try to cope with the pain. It was an old friend that would show up whenever I didn't know how to handle my feelings. Were it not for you, I probably wouldn't have said goodbye to that old friend for good over 7.5 years ago. Because of you my sweet son, I had to find healthy ways to deal with heartache. I became stronger and healthier than ever before. I learned to be open with your Daddy and talk through the hurt instead of stuffing it into a bottle. We grew closer, and I have been able to experience a deeper form of trust and intimacy than I thought possible. Because of you. 


Because of you, I am physically healthier than I have ever been. When you were small, you weren't happy unless we were moving. So I moved. And moved. And moved some more. At one point hiking 21 miles a week on your favorite steep hiking trail with you in the jogger stroller or on my back. You were my coach, pointing your precious little fingers forward to keep me walking and running when I wanted to quit. 70 lbs and a half-marathon later, I found myself in the best shape of my life. And though I am not as fit as I was, I have been able to keep the weight off due to the huge diet changes your unique body forced us to make for all of us. And I am forever indebted to you my son. 



Because of you, I find value in what really matters. I find success in the small things that so many people let pass by without a second glance. You have taught me empathy, patience, and unconditional love. You have given me a fighting spirit I never had before. You have opened my eyes to the world of people with disabilities. No longer do I act as though they don't exist just to make me feel more comfortable. You have made me more human. And I am not the only one you have impacted in the 9 years since you graced the earth with your presence. 



Because of you, your Dad took charge of his health so that he could be around longer to care for you. He made tough, selfless choices because you gave him a reason to care about himself. He became a harder worker just so he could provide for you what you need to succeed. 


Because of you, your brother will never know what it is like to have not gotten the right help at the right time. You paved the way for James to get what he needed much quicker than you did because you taught me how to be an advocate. Your struggles have brought James success and I hope one day he will understand how much you have impacted his triumphs.


And finally, I don't know a single family member or friend of ours that you have not changed. You have shown all of them what a truly spectacular boy you are, and that Autism brings some amazing challenges and even more amazing accomplishments. They all share the joy of seeing the boy you have become and look forward to celebrating what you master next. Even Great Grandma started going to a local school on Fridays and reading books to a class of Autistic children because of you. And now through this blog. You cannot begin to fathom how far your reach will become. 


Happy Birthday my sweet Bugaboo. You deserve to be celebrated. You are an amazing boy with so much to give to the world. I can't wait to see where your life will take you. You surprise me everyday with the things that you have learned. Thank you for being so patient with me as I struggle to understand you. Forgive me for falling short so often. I am blessed to call you my son. 



My life has purpose. 

Because of you. 

Monday, August 17, 2015

Perspective

Life isn't fair.

It isn't.

I know that, but when bad things happen to people as amazing as the woman in this picture, it makes me question all over again.

Why?



I met Krista back in my college years when I was working as a counselor at a Christian camp. She was a friend of my roomate and came to visit. I was only in her presence for a couple of days, but I remember she was such a kind and wonderful girl who was a true joy to be around.

Krista went on to become a nurse, get married, and have a precious little boy. Then 6 months after the birth of her little miracle, she was told she had invasive metastatic breast cancer that has spread to her lymph nodes, liver, ovaries, spine, and pelvis.

Why God? Why?

She started writing a blog to share her journey with others.

http://trustinggodwithmyfuture.blogspot.com/

It is a painfully honest look into the day to day of what she has endured. I cried more than once reading about the struggles she was going through, all while trying to be the mother she wanted to be to her precious boy.

One of the hardest posts to read was when she went on a mini vacation for a couple days to write letters and record video of herself for her son so that he could have a piece of her during the key moments of his life. She made sure that if she couldn't be there, he would have a letter to read on every birthday, graduation, wedding day, etc.

She fought so hard. She wanted to beat this. She believed in God's healing. And though she had her angry moments where she asked God "why?", she never waivered in her trust in Him and His plan.

Today her battle ended and she ran into the arms of her Savior. She is whole again. Free. She was ready to go.....her body weary and unable to fight the cancer any longer.

She was 4 days shy of making it to her son's 3rd birthday. 

Why?!

I can't stop the tears from flowing as I write this. My prayers are for her family as they have to figure out a way to go on without her. I can't image the pain they are enduring in this moment.

To her husband and son, I pray that God will allow the wonderful memories of Krista to bring you joy in the days to come. That Matias will remember the sweet sound of his mama's voice and comfort of her touch. That he will know how hard she fought to stay with him as long as she could. I pray Xhevat will find strength to make it through the difficult moments where it hurts to breathe and you feel you can't take another step. God, give him the strength he needs to be both mom and dad to their precious little boy. 

God, be near them. Remind them of your constant presence even in the small moments.

You have left your footprint on this earth in so many ways Krista. You changed me and I barely got to know you. I can only imagine the impact you had on all who loved you.






Sunday, July 26, 2015

A Place to Belong

Finding a place to belong is one of the most important parts of this human journey, and probably one of the most devastating parts of our journey with Autism. 

From the time Andrew was very young, he didn't fit in anywhere. Not only with his typical peers, but his spectrum peers as well. He always seemed to be the one with the most struggles. Unable to adjust to any type of structured or unstructured program. Unable to handle things that others took for granted, like playing at the park, or attending birthday parties. He never seemed to be bothered by this, but Bryan and I felt our hearts break a little each time we experienced it. We felt the pain for him. 

Andrew is almost 11 years old, and this inability to fit in anywhere has not changed. He is growing up, but in many ways he is still a toddler in his mind. The older he gets, the wider the gap between him and his peers. And the less he fits in. 

When he was younger, there were more opportunities for him to be included with others. But as he gets closer to junior high age, the inclusion falls away, and he is left more alone than ever before. 

This became more true than ever today when we met with the special needs director at the new church we started attending a couple of months ago. We loved our old church, and they are one of the few out there that have a true special needs program for all. But our youngest son needed more peers to interact with than what our church could provide, so for his sake we looked elsewhere. This new church has a great pastoral staff, and great children's program for James. They have so many activities going all the time, and their budget is in the millions. 

They also advertise that they have a special needs program. But we found out very quickly that their special needs program doesn't meet the needs of any child that is not able to mainstream into a normal classroom. It doesn't provide care for children that have physical or mental disabilities.....mostly it seems they cater to kids with attention issues. They provide a buddy to be with them, but require them to be in a classroom of their peers. The director stated that she knew that this was a need, but that no parent had come forward before with a child that has needs as severe as Andrew. 

She asked no questions about him or his needs. She showed no interest in him at all. And when I tried to explain what kind of a child he was and what his limitations were, she interrupted me with excuses as to why they haven't started a program to serve families with loved ones like him. She went so far as to say that they never want to turn a family away, but that there are many churches in our area that already have programs in place to serve a child like ours. Which for the record is completely untrue.

It was a huge disappointment to say the least. 

I don't blame the director herself, but this is a huge church. A church that has missionaries all over the world and a church that makes it a point to help those less fortunate. But what of the people that live right in their neighborhood....in an area with the largest ratio of autistic children in California? These families need the ability to have a chance to be fed and grow in their faith with other believers. And that chance is rare when you have to take turns with your spouse attending church because your child is not able to be cared for in that environment.  Even more rare if you are a single parent. They have respite days for a date night, and meetings once a month for families to get together and talk about their kids with special needs, which is all awesome.....but that is the extent of what they provide. We need to be able to attend church and grow in our faith in the Lord....all the while knowing that our child is safely cared for just like the other kids.

We left church with an ache in our hearts. A sadness that only comes from feeling left out. Again.  That ache quickly turned to anger. Churches should make it a priority to serve the needs of families struggling with the care giving of a child or adult with disabilities so that they can enjoy a church service. It takes time, training, and resources, but so does having programs for typical children. 

I just wanted to be angry. To stop going there all together and find a place where our family could have our needs met. But those places are few and far between, and I have to think of other families our there now and in the future that need a church they can call home. 

So instead I offered to help them build a program to serve a broad range of kids with disabilities. I don't know what will come of it, but she seemed willing, and open, and wanting to meet the needs of other families out there that are just waiting for an opportunity like this. 

So instead of being angry that my kid has been left out of something, I will make an effort to change his circumstances. 

Anger gets you nowhere. But it can give you that boost of strength you need to make a difference. 

Here we go.

Tuesday, July 7, 2015

Grace

Last night was rough. 

Ok, I'll be honest, the last couple of months have been rough.

Drew has been really struggling ever since I had to go back into the work force, which is something that could not be foreseen or stopped. Life happens. Bryan sustained an injury so serious that he is unable to work for an unknown amount of time.

Drew has always had me around. From the moment his eyes opened in the morning to the moment they closed at night, I have always been the constant in his life. With all of the changes of therapists, schools, schedules, etc....he always knew that Mama would be there to help him ride the waves of uncertainty.

All of that changed on December 10th 2014. The day that I started working full time after 10+ years being a stay at home mom. 

Even though Dada has now taken on the stay at home parent role and is doing an excellent job (better than me as far as I am concerned), he is not me. And to Drew, this makes life very hard. He is sad. He is angry. He is insecure. 

I feel awful. 

I can't be there when he is having a hard day. I can't be there to stop him from hitting himself when he is upset. I can't be there to wipe his tears of sadness and frustration when he cannot say the words in his mind he so desperately wants to share.

I feel helpless at work when I know that he is struggling and I have to continue to do the things that need to get done here. I have to trust that he will be okay. That Bryan can handle it. I know he can. But the mommy part of me hurts that I can't comfort my child. I worry that he feels abandoned by me. He doesn't understand why things had to change. I hope someday he will be able to.

Last night.....really the last few months of nights off and on, Drew struggled to go to sleep. He is fighting sleep. Literally. He cries, and cries, and yells repeating whatever consoling words I say to him, and cries some more. He pees his bed as soon as I leave the room and his bedding has to be changed multiple times a night. We have tried everything we can think of the last couple of years to fix this behavior but nothing has helped. The other night he cried for 2 hours straight until he fell asleep due to pure exhaustion. I read to him, sang him songs, held him, wiped his tears, and told him "mama is here, mama's got you" over and over...but nothing consoles him. We have talked to doctors, done testing of all kinds, adjusted his sleep supplements, tried new things, tried old things, and nothing works.

Some nights I respond to this the way I should. With patience, love, consoling words, and more patience. Other nights when I am exhausted from my own busy day I respond to him with irritation, anger, frustration, and impatience. And then the guilt follows. I hate myself for not being able to control my reactions. I know in my mind that Drew can't help the way that he is. He is going through something and he is not wanting to have the problems he is having. He doesn't like not being able to sleep, or to cry so hard that he struggles to breathe. I know this. But sometimes I am weak. More often than I would like. 

After a long struggle to get him to sleep last night, I came out of the room and sat down with my phone. A message came to me over Facebook from an online friend that follows my blog and my boys. It took my breath away and brought tears to my eyes.

 It started with a question. "What do you do when things get really bad?"

She went on to describe difficulties with her daughter and the hardships she and her daughter face on a daily basis. She asked me how I cope, and stated her fear that she is not a strong enough mom for her daughter.

I wanted to have a brilliant answer for her. Something to encourage her about how I cope with things and something that will give her strength to get through another moment. 

But I didn't. My response was this.

"I am not strong enough. I wish I was. I try to be."

"Only God's grace sustains me. I feel guilty. I should have more patience. More strength. More endurance. I am so sorry. You are not alone. I wish I had good advice.....but I am in a broken state as well."

"I do the best I can and I feel it is never enough."

Sometimes it just has to be enough to know that you aren't alone in your struggles. That there are others out there that understand what you are going through and will support you just by listening and sharing in your struggles. 

Life is hard. It will probably always be. I just have to push on and continue battling with myself to be better for my son every single day. 

I'm gonna screw it up. 

A lot. 

But I will choose to keep trying and give myself grace along the way. 

And I hope you do the same. 


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.
Care.  


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.

Why?

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.