"The Talk"

I never thought I'd be having "The Talk" with my 7 year old. I'm not ready for this. It's too much. It's too soon!! Why can't he just stay little a little longer.

I'm not talking about "The Talk" that you are thinking about though. I'm talking about "The Talk" where I have to explain to Jacob that he's different than other kids. That he sometimes struggles more than other kids. That he has autism.

He told us the other day that he's not normal...that he's not like the other kids. We didn't know what to say. We want Jacob to know that he's different, in hopes that it helps him understand what he needs to do to overcome his obstacles in life. But, How do you tell your kid that he's not like the other kids at school? I wanted him to stay unaware as long as possible. Ignorance is bliss, right?

I know I can't really postpone telling him any longer though. The sooner I try to explain his differences the better off he will be. I don't want him to be confused or frustrated with himself and I'm hoping that explaining his diagnosis will help him.

I might as well explain it to Caleb while I'm at it. He is starting to notice that Jacob has more fears than he does. The other day I was trying to trim Jacob's toe nails. A task not for the faint at heart. He was screaming and crying and Caleb said so sweetly "Jacob it doesn't hurt, see, mommy did mine the other day!" As much as Caleb was trying to console him, it didn't work, and it never does. A small simple task turned into a screaming fit with Jacob pounding his fist into my back as I held him down to trim his toes. Him screaming "am I done" at the top of his lungs while violently kicking his feet.

By the end of the fiasco he and I were both crying. I put the clippers down where he could see I didn't have them anymore and then I sat next to him and held him close. I told him that I was sorry that it was so scary for him and that I just wanted to make sure his toe nails weren't cutting him. I tried my best to explain that what I was doing was for his own good. The anxiety is just too overwhelming for him to understand that concept. With a waiver of sadness in his voice he asked, "mommy, why does it scare me more than it scares other people?"  I sat, bewildered at the question he had just asked. As my mind raced to find the words, my heart was broken. Why, oh why does my sweet boy have to struggle with life.

I went on to explain that other people are scared of other things. Daddy is scared of heights and I'm scared of spiders. He seemed to be satisfied with that answer, Thank you Jesus!! It was then that I realized that it was time, it's time to explain to him how different his mind is, but that we love him just the way he is.

Oh how I wish life was easier for him, but his life continues to teach me so much about mine.

Things to Ponder

Two days after Near His Heart, and a long two months planning for it, I get a cold and Erick and Jacob end up with a nasty stomach bug. On top of that it's the week that I had set aside to study for my real estate exam. That was obviously pushed back a week due to all the sickness. In the midst of a very frustrating and tiring week I experienced two moments that I will cherish forever.

Most of you may know that kids with autism don't reciprocate love very often. We've been blessed that Jacob does this sometimes, but not all the time. Or, it may come in a different way that doesn't seem like love at all. When it comes to Caleb, Jacob doesn't share his love. Which, is typical of most brothers I assume. In fact, at supper when Jacob says his blessings he says...

"Dear Jesus, thank you for mommy, daddy and RJ and for our food, Amen!!" 

We have to continually remind him to add Caleb to his prayer and he does so, reluctantly.

This last Tuesday, after a long frustrating day, Jacob and Caleb were lying in their beds supposed to be going to sleep. I hear Caleb call out from his bed, "I love you Jacob" and a few moments later I heard something that was sweet music to my ears..."I love you too Caleb!" I do believe somewhere on this earth there were pigs flying. Erick and I made sure that we each heard what was going on upstairs.

After Jacob got the stomach bug and was on the couch all morning yesterday, I once again was greeted with another sweet moment. Caleb knew that Jacob wasn't feeling well so he got a few cars, went over to the couch and began to play with my sweet, lethargic Jacob. This wasn't very odd, considering that Caleb adores Jacob and likes to make him happy. Even so, it was a sweet sight.

They continued to play like this for a good 15 minutes and I enjoyed every minute of it. I went about my day trying to clean and straighten up and when I came back in, I found them like this...

I had to pinch myself to make sure that I was not dreaming...ok not really, but this moment IS rare. The fact that Caleb climbed up on the couch with Jacob is nothing to write home about. It's the fact that Jacob didn't push him off. Now, THAT, is nothing short of a miracle.

"But Mary treasured up all these things and pondered them in her heart"

Luke 2:19

I love when our own life moments make certain verses in the Bible come to life for us. When I was little and heard this verse I never understood the depth of it. Now that I'm a mom, I can understand the emotion that this one short little verse is talking about. Even through the chaos of life, we can find moments that make life sweet. Thank you Jesus for these moments!!

New Mercies

Because of the Lord's great love, 

we are not consumed

for his compassions never fail.

They are new every morning;

great is your faithfulness.

Lamentations 3:22 & 23

I woke up with this verse on my mind. Jacob woke me up just a few minutes before five and I surprisingly felt very refreshed. Refreshed is not normally how I feel anytime the number four is at the beginning of my clock, but for some reason I felt like a million bucks. 

Jacob left for school, then Erick left shortly after for work. As Caleb and I sat, eating breakfast and listening to some music on my phone, I became overwhelmingly thankful for God's mercies that are new every morning. They are always there, but I don't always acknowledge them. I pulled out my Bible and looked up the scripture and to my surprise it was in Lamentations. I assumed it would have been in Psalms. 

My whole reason for being thankful for this verse is because I fail so often and I'm thankful that his mercies are new every morning. I have the desire for everything I do and say to people be lifting them up and not tearing them down. We have the ability to either tear people down or build people up with our words and we seldom pay attention to the effect that our words have on people.

A gentle tongue is a tree of life, but perverseness in it breaks the spirit.

Proverbs 15:4

A soft answer turns away wrath, but a harsh word stirs up anger.

Proverbs 15:1

Whoever guards his mouth preserves his life; He who opens wide his lips comes to ruin

Proverbs 13:3

Let there be no filthiness nor foolish talk nor crude joking, which are out of place

but instead let there be thanksgiving.

Ephesians 5:4

Most of the time my words don't represent any of these previous verses. I have the desire to speak life into my husband and my children, but I fail them often. I have great intentions on building people up but I usually tear them down instead. I have great dreams in ministering to others but I find myself struggling to minister to the ones I live with, which they should always come first. I relate so well to Paul when he writes the following,

I know that nothing good lives in me,

 that is, in my sinful nature. 

For I have the desire

to do what is good, 

but I cannot carry it out.

For what I do is not the good I want to do; 

No, the evil I do not want to do, this I keep on doing.

Romans 7:18 & 19

I'm not always going to get it right, and I'll fail again today at some point. But I can strive to speak life with my words and when I do fail, I know that his mercies are new every morning!!

The Quest For Sleep

I was awoken this morning by little feet and the hall light being turned on. I looked at my clock and it read 4:36 a.m.. My first thought was "ugh, it's before 5" my second thought was "Yay, he slept 16 minutes longer than yesterday!!"

I've always heard about sleep problems that other kids with autism have. Erick and I had always said that we were blessed in that area because Jacob had always been a fantastic sleeper. However, people that over hear the conversations I've had lately with my parents and my friends about Jacob's sleeping habits probably think that I'm talking about an infant, and rightfully so. In all honesty though, I'd rather be dealing with infant sleep issues right now. I feel like I'd be more adequately prepared for a sleepless baby.

Jacob woke up at 4:58 the other morning. Erick and I were excited because we actually got to sleep "late" that morning. As we lay in bed Erick excitedly said "Is it sad that I'm excited that I got to sleep as late as 5 a.m.?" I began to laugh as I answered him, "Yes, but I'm excited too!"

For the past three in a half months Jacob has been getting up before 5 a.m. It started off him getting up at 4:30 and has gotten earlier and earlier. The night that surpassed all other nights is the night that he woke up at 1:45 and never went back to sleep, even after I gave him benadryl. I made another appointment with his doctor after that one! The weirdest thing about all of it, is that he doesn't seem sleepy during the day either. His behavior has slowly gotten worse and he's rocking more and more and is getting irritable very easily.

We've exhausted every possibility of why he's getting up. We've adjusted his meds, gotten him a memory foam mattress topper, given him a night light, made sure he was pottied up before bed, given him melatonin and benedryl. We just started giving him a stronger sleep aid at night and he's back to getting up at 4:30, which is a huge difference than the two and three o'clock awakenings. However, his sleep meds are hanging with him throughout the day and he can hardly keep his eyes open. He's been extremely irritable in the mornings and it's been a big struggle just to get him dressed to go to school.

I'm starting to feel like I'm failing him. I'm running ragged trying to figure out what's going on in his little mind and body but I continue to watch him struggle and, in my negative mind, possibly deteriorating. This whole ordeal is consuming my mind. I have forgotten many important things lately. Possibly from lack of sleep or possibly from only being concerned with this one matter...maybe it's a little of both. I've never known sleep deprivation more than I know it now. My heart tells me I love Jacob immensely but my mind tells me to be annoyed with him and just distance myself from him. It's an emotional struggle for me. I feel love, guilt, shame, joy, hope, hate. It's all wrapped up in one little package and it's hard to have one without the other. It's the one of many times that Jacob needs positive attention and that's the one thing that is so hard to give.

A concerned friend asked me the other day how Erick and I were doing through all of this. It was a nice question to ask because with any type of sleep deprivation, being selfless and loving is not at the forefront of your mind and your relationships start to suffer. I laughed and replied, "It's been great, we're too exhausted to argue." Although that may be true, it reminded me of how well Erick and I work together in the face of disaster. Maybe you think disaster is a strong word, but if you'd lived in my shoes the past three in a half months you would see that I was being gracious with my choice of words.

In the midst of what could have turned into a top story on the news entitled "Mom and dad lock their two boys in their closets then slept for 3 days straight," I can think of a few positive things that have come out of the chaos...

Like I said previously, I was reminded that Erick and I work well together. We've traded off sleep times and frustrating tasks. We've laughed when we've wanted to scream and we've started doing something together that Erick always wanted...we drink coffee together now.

We have spent more time around the breakfast table as a family lately. If you're going to get up that early, you might as well enjoy it. You can't enjoy an early morning better than with a southern breakfast of bacon, eggs, biscuits and grits.

I can fully understand other autism moms when they tell me about their kids sleeping issues. You can always minister to others better when you've been through it yourself.

This has been the busiest time ever for our family. Not only has Jacob not been sleeping good but I'm trying to be the super mom while getting my real estate license and then on top of that plan for Near His Heart (the dinner for families of special needs kids). I've never been more driven to plan for Near His Heart. I know it's always been needed but now, in the midst of lack of sleep, I realize what other special needs families face on a consistent basis. I realize even more, now, how much these families need a night of rest, encouragement and revitalization.

Ok, now I need to go finish my coffee, then take a nap!!

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.