The Lonely Road

Let me just start off by saying that this is not a post to complain about my life with Jacob. To be able to share with you what's on my heart, I have to give you a little insight into my daily frustrations and then I will make my point...

We have good days and bad days with Jacob. Some days he seems very aware of everything around him, he's talking more and smiling more and seems to be, in his own way, independent. Then there are the bad days...

For the last 3 months Jacob has consistently been waking up between 3:30 and 4:30 a.m.. He hasn't slept passed 4:30 in I don't know how long. He won't go back to sleep for anything. We've tried melatonin, Benedryl and other natural remedies and nothing is working. Erick and I are sleep deprived but we're trying to stay calm and positive. It's HARD!!!!

Jacob obsesses over things. Lately he continues to open and shut doors throughout the house constantly, it drives us crazy! He gets hung up on words and won't quit saying them. Right now he keeps saying "shut-up" and we can't get him to stop. He's been rocking again all the time and that noise that it makes when he's rocking in the recliner is starting to grate on my nerves. He's been obsessing over a picture that we have of him and our neighbor RJ. He's Jacob's biggest buddy, which is really sweet. However, he carries this picture around and talks to it, sleeps with it and completely obsesses over it. All these things are cute for the first hour and then they are annoying.

Jacob has been demanding stuff lately. Screaming at me, demanding me to get him things. He's been kicking and screaming when he doesn't get his way. He's also been slightly abusive to me and Caleb.

Jacob has been resisting everything!! Going to the bathroom, eating, getting dressed, getting on the bus, going to sleep or staying asleep I should say...these are just to name a few.

Many times, now, I do get some love in return. Jacob will hug me and ask me to kiss his cheek and he says "I love you mom." I remember not too long ago that I didn't ever get anything in return. Those were the hard days. Giving everything you had to offer to your child, them resisting it all and then getting nothing in return is a hard pill to swallow.

Most of the time I have to feed Jacob. Not because he can't physically feed himself but I have to feed him so that he at least gets something healthy in his body.

He's 7 1/2 years old and I assume that other 7 1/2 year olds bathe themselves. Jacob doesn't, I bathe him just like I did when he was 2 years old. I brush his teeth and I give him his medicine. Most 7 1/2 year olds can probably dress themselves. Jacob's getting close but I still have to dress him and put his shoes on. Most 7 1/2 year old probably don't need any assistants in the bathroom, again, not the case for Jacob.

I know some of you are reading this and thinking that it sounds like raising your typical child...it's not anything like raising your typical child. I have a typical child so I can say with full confidence that it's NOTHING like raising a typical child. Imagine the thing that annoys you about your kid the most, multiply it by 10 and then add it to every single second of every single day and then imagine no type of discipline strategy working.

This is just the tip of the iceberg compared to some people. Some people have children that are way more severe than Jacob. Some people are going on YEARS of sleep deprivation. Some of them are bathing and dressing their 30 year old and spoon feeding them. Some people have no relationship with their child. At least Jacob does play and laugh with us. Some people have medical bills stacked to the ceiling of things that they can't pay for. Some people are raising a child with multiple disabilities, or multiple children with disabilities. How do they do it? I sit here and think that Erick and I have it bad, and compared to most, we do. But compared to many other's? We have it easy. How do they do it? How do they live every single day and not lose their minds? I've only had 3 months of sleep deprivation but what about the people that have 13 year olds that don't ever sleep. I'm talking about years upon years of not getting the correct sleep.

I've seen/heard about 5 stories in the last year about mother's who have murdered their sons that have autism. Most of these little boys look to be around the same age as Jacob. Most people probably think they are horrible horrible people and while I tend to lean that way, I can't help but think how easy it would be to go down that road. If I didn't have Christ, my husband, my parents, my church and my friends to lean on, then I would probably go down that road too. I can see where it would be easy if I didn't have the support that I have.

Special needs is lonely, draining and discouraging. I woke up this morning, heavy hearted for the families that have it worse than me and that have been at it longer than me. I want them to have joy, hope and peace. I know that Near His Heart is only one night, but it's something that I can do to give these families a brief moment of rest and enjoyment. Something so simple can go such a long way when you are struggling to find joy.

Mom's are already too hard on themselves. Mom's with children with special needs are even worse on themselves. The looks and the stares that we get from the outside world are the worst because they have no idea what it's like to walk in our shoes. Today, I'm praying for all the mom's out there with special needs children. I pray that they can find comfort, that they can find hope and peace. I wish they could all come to Near His Heart!! If Near His Heart only reaches 1 person then it is totally worth it to me. To give one mom hope and peace would mean the world to me!

Welcome To The Family!!

I just got off the phone with a mom from Baldwin County. She just entered the autism family. Welcome to the fam!! It's a crazy ride! I call it family because sometimes I can relate to the other autism moms better than my own blood relatives. She got my number from my uncle and called me because she found out last week that her 3 1/2 year old son has autism. We talked for a while about treatments, advice, therapies, vitamin regimens and diets. I started reminiscing about what life used to be like for us and I became overwhelmingly blessed with how far Jacob has come.

I remember having to reward Jacob with smarties in the car just for not crying because we went a different way than he thought we were going. I also remember having to reward him in Walmart for not freaking out at the bright lights. It was somewhat similar to training a dog. I would have smarties in my pocket and would reward him every time he behaved correctly and I'm pretty sure that "good boy" came out of my mouth a few times. I began laughing as I told her about the smarties rewards. I had almost totally forgotten about rewarding him in that way. His behavior has changed so much that it's almost like having a totally different kid.

There are memories that I don't laugh about so much. Like the constant poop smearing activities that went on in Jacob's room. Those memories are free to fade!! It's never fun getting woken up from a deep sleep but getting woken up from a deep sleep and walking into your child's room only to step in warm, wet....well you know!

It's amazing how many people I've met over the years that I never would've known had it not been for autism. Some of them have turned out to be pretty great friends! I remember calling strangers to get advice and information. One of those lady's is the one that asked me to be on the Near His Heart  team. Who would've have known that a phone call out of autism potty training desperation could have lead to such a fun ministry.

I'm so thankful to all of those that have been there through the years, whether it was a one time phone call or a few phone calls that turned into friendships. I love getting to pass on the encouragement to other moms new to the journey.

The Glorious Turmoil

    I used to question whether or not I was truly saved. I believed in Jesus and knew that he was real, but was it just because I grew up hearing it. having grown up in the church, it's sometimes confusing whether or not you believe it because you actually believe it or you believe it because you've just been told over and over that it was truth. Either way I'm so thankful that my parent's took me to church because it laid the foundation for Christ to work in my life.

   I've been a believer since I was five years old. I remember going into my parent's room one night and asking my dad to help me ask Jesus in my heart. I know now that I didn't know at all what that meant or what I was getting myself into but I know that I wanted to and that I had that desire at an early age. At the age of eleven I remember realizing that there was more to Christ than just saying a prayer and being baptized. It was then that I started taking my relationship with Christ more seriously. Even then, I was a kid and didn't really know what it meant to be a Christ follower, but I knew that there was something special about it.

   I like to think that I was a strong Christian through my high school years. I never did anything terribly bad, I obeyed my parents and didn't get into trouble. I bought into what our youth pastor was saying and followed it with all my heart. Even then I didn't know what true devotion was nor had I ever experienced anything that knocked me off my feet to where I had to totally depend on Him for guidance. I obviously knew more than when I was five and started to understand more of why He sent his son to die for us but I was still caught up in the superficial, religious and judgmental side of Christianity.

   It wasn't until I got married and had kids that He started to stretch my faith. It's ironic to me that the two things that I wanted more than life itself, are the two things where God has tested my faith and made me grow in the most un-pretty and un-graceful way. I've never cried on my face before God more than for my marriage and for my kids. All along I thought God was preparing me, throughout my teenage years, to be a good wife and mom. I realize now the only thing He was preparing me for was to be able to run to him when I was struggling and failing miserably.

   My proof of salvation now comes from the fact that when I run from the Truth and start trying to do things on my own, there's this uncontrollable, involuntary pull from the Holy Spirit that always brings me full circle back to His grace. It's like a bungee cord on my soul that, when I run so far from Him, it yanks me back to reality and into His loving arms. This process might sound joyful and fun but it's painful, dreadful and hard. It's in those times that God reveals to me where I've gone wrong and it's never fun to be told you're wrong.  I can, now, totally relate to the song "You Never Let Go" by Matt Redman...

"Oh no, You never let go

through the calm and through the storms

Oh no, You never let go

in every high and every low

Oh no, You never let go

Lord, You never let go of me."

   I remember a few years ago, when I was struggling with our new autism life, running from God. It was really unintentional but the longer it went on I started to wonder if I was ever going to run back to Him. It was painful to be faithful, because in a way I thought He wasn't faithful to me. I questioned Him and hated Him at times. I kept reminding myself of the cute little sentence we all say to each other, you know the one that is supposed to make you feel good in times of sadness..."God will never give you more than you can handle." Those words are supposed to be comforting, but in the midst of total devastation, they come as a nuisance. I wanted to die during that time and hearing those words didn't make it any easier. At the time it is more than you can bear, which is the perfect place to start totally relying on Him.

   Now looking back over the years, I wouldn't trade a second of my pain for anything. It's in those times that God drew close to me even though I didn't realize it at the time. It's in those times I've learned to worship Him through the pain because in the end what we gain in heaven far outweighs our troubles on earth. I never quite understood people when they would talk about longing to be in heaven. The thought of not being on the earth was always a scary thought for me. The older I get, physically and spiritually, I feel that same longing I once thought was odd. I can't wait to just be with Christ and not struggle with this earthly life. I can't wait to have a purified faith that doesn't struggle to be faithful. The most exciting thing for me is the thought that I will one day know Jacob in heaven in a perfected body with no more autism and he will be able to speak to me clearly and love me with no hesitations.

   I am beginning to understand the verse in James 1:2

"Consider it pure joy my brothers

when you face trials of many kinds,

because you know that the testing of your faith

produces perseverance. 

Let perseverance finish its work,

so that you may be mature and complete,

not lacking anything."

   I was listening to a John Piper sermon yesterday "Do Not Lose Heart." It's the one that the excerpt on Shane and Shane's "Though You Slay Me" video comes from. It's a fantastic sermon on the verses in 2 Corinthians 4:16-18

"Therefore, we do not lose heart,

though outwardly we are wasting away

yet inwardly we are being renewed day by day.

For our light and momentary troubles

are achieving for us an eternal glory

that far outweighs them all.

So we fix our eyes not on what is seen

but what is unseen

since what is seen is temporary 

but what is unseen is eternal."

  I think this is going to be my new life verse. It's a reminder that what we do on this earth and what we face on this earth is by far anything but meaningless. It's the time that He is preparing us to live with Him in eternity and I will worship Him through the pain and suffering to see that promise fulfilled. I look forward to the day I see Christ with my own eyes and can look back on my life and realize that every tear was not in vein.