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?