The Reminder

I want very much for my blog to offer encouragement to others. I also want to offer true understanding and insight into the life of a family with a Special Needs child.  With that being said, today I am allowing myself to be just a bit more vulnerable. Today I am allowing myself to confess to you that some days are just very hard. Not hard as in I-may-shed-one-glistening-tear hard, but more like I’m- going-to-do-the-ugly-cry-into-my-pillow-all-night-long-and-wake-up-with-racoon-eyes-for-work-the-next-morning hard.

Today’s topic came to light after one of my Love In a Different Language-reading-friends recently made this comment to me “I love reading your blog! You offer so much encouragement! You really seem to have a handle on life with Autism!”   Whoa.

First, I am so glad to know that someone besides my mom reads my blog! Secondly, I am so glad that my blog-reading-friend found encouragement in reading it. There are so many sweet ways that the Lord offers me encouragement on this journey of Autism and I love to be able to share that with others. However, I will admit to you that I certainly do not have a “handle on life with Autism.”

What I do have a handle on is this truth: I will NOT make it through this Autism journey without the help of my Jesus. Plain and simple.  And that, my friends, is because it can be hard. Very hard.

This past week was a very real reminder that life with Autism can be very unpredictable and challenging. Ezra had a rough week. A family member was sick and with all the back and forth visits to the hospital and interrupted schedule, Ezra struggled. What does it look like for a child with Autism to “struggle”? Well, for Ezra it means any combination of the following: screaming, crying, aggression, constant movement (as if he is on fire in his own skin), wants comfort but can’t stand to touch, touches but can’t control impulse to hit, spitting, throwing….it really just depends on the day.

Other moms who are further down this journey of having a child with Autism have told me that the first five years are without a doubt the hardest. I imagine that is probably right. You see, with a little one, you are starting from scratch. You have to find out what their “triggers” are. You have to discover what works to help pull them out of these “Autism meltdowns”.  And no two kiddos are the same! I have heard it said that “Once you’ve met one person with Autism, you’ve met one person with Autism.”  How very true. What works for my Ezra may or may not work for the next child with Autism. Therefore, life as my family knows it often times turns into a constant game of trial and error. I know this trial and error way of life will not last forever as we are little by little figuring out what “works” for our sweet boy.

I will tell you that there are many feelings of helplessness.  This past week, that is how I felt. Because I watched my baby struggle as I tried one thing after the other to try to comfort him, and nothing helped. We just had to wait patiently for about a full week for him to wake up “clear” and happy again.

I will tell you that there are many feelings of being alone. This is certainly not a ploy to achieve the highest level of Facebook friends or to beg for an invitation to your home for dinner. I’m just being honest. It is lonely. Yes, we are unable to go and do as others are able to go and do. And yes, some of our friends and even some family members feel “uncomfortable” around Ezra and keep their distance. But that’s not really even the kind of “lonely” that I’m talking about.  

This feeling of loneliness can come in even a large room full of sweet friends and loving family. It’s the kind of lonely that comes from feeling that there are very few who would or could understand your family and why you do the things you do, act the way you act, discipline the way you discipline, and how this thing called Autism effects every aspect of who you are. It’s the kind of lonely that comes from worrying: will he have a meltdown? Will he get upset? What is my plan if X happens? What is my plan if Z happens? And even if he IS having a good day- what if something sets him off?   This was a lonely week.

Please do not for one minute think that it is all heartache all of the time. On the contrary, I feel so very blessed to have been chosen to walk this journey with my sweet baby. There are so many wonderful and precious moments that I will forever treasure. The days when we “struggle” make the good days that much sweeter. I truly believe that parenting is a calling and I also believe that God equips the called! I do not take for granted the fact that God chose me to be Ezra’s mommy. I trust that He will equip me to be the best mom for Ezra that I can possibly be.

Yes, it is hard. No, I do not have a “handle” on life with Autism.  There is a lot I do not know and there are a great number of struggles that I could share with you. But don’t we all struggle from time to time? You may not be facing the same struggles I am, but I would venture to guess that you have a set of struggles all your own.

I will tell you that there is no way I could make it through this Autism journey without my dependence on the Lord. He is my source of strength. He is my source of joy. He continues to reveal Himself to me in sweet ways throughout the good days and bad.

Even this past week, in the midst of a very rough time, the Lord gave me such a special verse. “My ears had heard of you but now my eyes have seen you” Job 42:5. This verse spoke straight to my heart. This is my prayer for myself. I don’t want to just “hear” about the Lord and how awesome He is from other people. I want to experience and “see” it for myself on a day to day basis. I hunger for that. I need that. THAT is how I make it through this thing called Autism.

It is my prayer that through it all, good times and bad, that the Lord would continue to reveal Himself to me. I pray that I will “see” His grace, His love, and His mercy carry me through even the toughest of days.

It’s true. There is a lot of laughter, many tears, and much love in our home. It’s not always easy. But I am so thankful that “The Lord is close to the brokenhearted and saves those who are crushed in spirit” Psalm 34:18. I needed to be reminded of that this week. Maybe you did to?

This was our "happy" for the week. 

Temporary Home

I don’t listen to a lot of country music. Don’t get me wrong, I like country music just fine but I am usually jamming to the tune of Veggie Tales in the car with the kids most days. One day recently, I had the rare opportunity to be in the car alone long enough to justify turning on the radio and I decided to skim the channels. I’m not even sure which station I landed on but a nice melody had started playing and I listened along.

It was a song by Carrie Underwood called “Temporary Home” and the chorus brought tears to my eyes.

This is my temporary home, it's not where I belong
Windows and rooms that I'm passing through
This is just a stop on the way to where I'm going
I'm not afraid because I know
This is my temporary home

I instantly began to think about Ezra, about Autism, about our frail earthly bodies. I have no idea what Ezra’s future holds. I don’t know if he will ever be able to fully communicate. I don’t know if he will be able to connect with others.  I thought about how he is in a constant fight with himself and his impulses. I don’t know if he will ever be free of these things here on earth.  There is a lot I don’t know and it can be very overwhelming.

While I am in constant prayer for ways to help our sweet boy here on earth, I do hold tight to the promise of eternity. I am so thankful that the Lord has entrusted my sweet boy to me until that day. I pray for many many more years of snuggles and loves from my Ezra. I pray that we will be able to help Ezra overcome many of the Autism "obstacles" he faces. But I do know that one glorious day, my Ezra will sing words of praise to the Lord, he will run on streets of gold, and there will be no frustrations or fears. What a precious sight that will be!

Oh friends, if you are weary from whatever circumstances you are facing today, I pray that you would be encouraged. This is not it. Our lives are but a vapor that is here for a little while, and then vanishes away (James 4:14). As Christians, we have the promise of eternity!

I am so thankful for the promises of God… they are eternal promises! While I am so thankful for the blessings the Lord has given us here on earth (our life is extremely blessed), I am so glad that this is just our temporary home!

Revelation 21:4 “And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain; for the former things are passed away.”

Perfect Peace

“You will keep in perfect peace him whose mind is steadfast because he trusts in you.” – Isaiah 26:3

I have a confession. I have a very hard time memorizing scripture. No matter how much I want to have God’s word “hidden in my heart”, it just doesn’t come easy to me. It’s something I really have to work on.  So, I have adopted a little habit that helps me to memorize these little life-giving nuggets of truth. This habit is what my husband jokingly calls my “Unabomber Notes.”

I have scripture written on little post-it notes which are hidden all around our house (I guess you could call that Unabomber-ish). So, as I go through my day I can read these verses and as they encourage me, I am also memorizing them.

This verse- Isaiah 26:3 – has become one of my very favorite verses. In fact, I love it so much that if you were to visit my house, you would see it not only written above my kitchen sink, but also by my nightstand, in my car, and in my day planner.   

The reason this verse has had such a huge impact on my heart is because of a thought I had not too long ago. This was my thought:

On one of the rare occasions that my sweet boy (with Autism) is able to look up at me and actually make eye contact with me, what will he see? Will he see a mom that is Tired? Frazzled? Or Frustrated?  OR will he see a mom that is Peace-Filled? Content? And Joy-Filled?  What message am I sending both of our children? What do they see when they watch me?

You see, in Isaiah 26:3 the Lord says that he will “KEEP” us in Perfect Peace if our mind is steadfast because we trust in Him. I am so very convicted to be sure that I am constantly putting my trust in the Lord and meditating on His word- because that is the only way to “keep” in perfect peace.

If you have a child with Autism, then you know that most of the time, your house can rarely be described as peaceful. However, I am coming to understand that even though my life in general may not always be described as Peaceful- I can still be Peace-filled. That’s what I want. That’s the example I want to set for both of my children.

Thank you Jesus that you offer us Perfect Peace!

Uncertainties

There are many uncertainties when it comes to Autism. What is the cause? Is it something I did? Will there ever be a cure? Will my child receive the help he/she needs in order to be successful? Will my child be made fun of at school? Does my child know how much I love him/her? What would my child tell me if he/she could talk? What’s going on inside that little mind? What does his/her future hold? The list could go on and on and on.

With all these uncertainties it is so very easy for me as a parent to become completely overwhelmed by the What Ifs, What Wills, and Why Nots (the “three evil Ws”).  I let these uncertainties rise up in me until my heart feels as though it’s drowning.

There was one particularly hard day that I had had enough. I felt defeated by Autism and the “three evil Ws”. It wasn’t that Ezra was having an incredibly hard day, he was actually having a rather good day. But I have come to realize that just as my special needs child has those “bad days”, so do I. There are times where I just sit back and watch him and the uncertainties flood my mind; setting myself up for heartache and worry.  This day was no exception and I felt helpless.

So, I decided that instead of dwelling on all the uncertainties that Autism entails, I would make a list of certainties; the things I know without a doubt are true despite the grip that this syndrome has on my little boy.

What I am certain of:

-God has a purpose for my child and He will accomplish that purpose in spite of any syndrome or disorder my child may have.

- The Lord chose me to be the parent of my child. So, despite the fact that I may feel inadequate at times, I AM the perfect person for the job…the Lord chose me especially for my child!

-This is not our home. As a Christian, I know that one day we will trade in these earthly bodies for perfect ones. What a glorious day to see my sweet child and listen to him sing WORDS of praise to the Lord.

- The Lord will provide. The Lord will provide exactly what my child needs to accomplish his God-given purpose. We may or may not be able to afford the best of the best treatment or be able to go to every kind of therapy/program offered but the Lord will provide what we need in order to accomplish His special purpose for my child.

-God loves my child with a love far greater than I could ever comprehend. How much more must his heart break for my child and his frustrations and how much more must he rejoice with each triumph.

-The Lord never promised me “easy”. He did, however, promise that He will never give me more than I can handle. I must learn to lean on Him for strength.

- God is in control. He is on His throne. Nothing comes as a surprise to Him. He’s got this!

Such peace fills my heart when I remind myself of such certainties! I am so thankful for the peace of knowing that the Lord, my Heavenly Father, is in control!

Philippians 4:6 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

I See

Ezra doesn’t have many words. At least, not near as many words as other children his age. It’s just part of the whole package being “on the spectrum”. Communication has always been hard. 

Ever since Ezra was a little baby, when I sensed his frustration in being understood, I would hold him up right in front of my face and say “I see you, Ezra”.  It didn’t have an instant calming effect on him or anything spectacular but it was my way of letting him know that I knew he was there, I knew he was frustrated, and he had my attention. This has become something I do quite often. It also serves as a great reminder to myself…  See him. He is not just throwing a fit or being unruly. He is frustrated. He wants to be seen. He wants to be understood. Look past the hitting, screaming, spitting, and fighting…and SEE HIM. 

Eye contact has always been hard as well. However, even if it’s just for a split second, when I focus my eyes on my sweet boy’s eyes and tell him “I see you, Ezra”, he almost always will at least throw a small glance in my direction. 

The moments when Ezra lets me in to his world and we are able to share a laugh at something, when I am able to understand what he wants, or simply being able to make eye contact, these moments are priceless. I forever treasure them. On the days when Ezra struggles more I find myself watching with a sort of desperate curiosity… what is he thinking? What is he trying to cope with? I wonder why he does one thing and not another? How can I help? I think these questions are good. Never stop asking questions. Never stop trying to “see”.  

There is a part of Ezra that is locked away and trying so very hard to find its way out. Never stop asking the “I See” questions. I want to be sure that my sweet baby knows that “I See” past the behavior, “I See” a precious little boy, “I See” a boy that God has a specific plan and purpose for, “I See” his struggling, and “I WILL See” that he has all of the love, support, encouragement, and help that we can possibly give him.

Go figure that one of the few two word “sentences” that Ezra goes around saying is a repetitive “I see, I see, I see.”  I see you too sweet boy. I may not always understand, but I see you and want to learn more and more about you each day.  

Just a thought:  Don’t we all want to been seen and understood? No matter who you are, I believe we all have these desires. Aren’t you glad that the Lord sees us? He knows the desires of our hearts, our struggles, our triumphs… and despite knowing everything about us he loves us unconditionally. Thank you Lord, that you notice us and you love us! All of us. No matter what.