anxiety · autism · God's Promises

My Autism Struggles: Part II

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(Yes, this is long, I believe it is worth the read.)

These are the five most wonderful people I know. My husband and my children, the ones who make up our perfect little family. You see, when I was a little girl I wanted to get married and have a big family. I always wanted to have my son first because I wanted an older brother and I wanted a sister. After the first three kids, it was up to God what came next. I always wanted to adopt, but whether the adopted child was first or last or in the middle did not matter either. I had my family planned out perfectly and thankfully, God listened to me and decided to play along. Kind of like when our children have plans to head to the park and we squash them with errands that need to be run instead. Occasionally, though, they’ll have a plan to do something and without them knowing we’ve already decided to oblige them. 

What was not in my plans (and God knew it!!) was to have a child with emotional or behavioral issues. In fact, when we were in the process of adopting, I told everyone we talked to, We feel prepared to handle some medical issues, learning disabilities, downs syndrome, and most other disabilities. However, we do not feel that we can handle behavior and emotional disabilities. At the time we were trying to adopt, I was a behavioral specialist at a school in an impoverished area in NC. I knew that I could not live it and work it.

Well, as the saying goes, God has a sense of humor! Maybe not a sense of humor, but the Bible says,

“For I know the plans I have for you,” declares the Lord,
“plans to prosper you and not to harm you,
plans to give you hope and a future.”
Jeremiah 29:11

So, God gave us this amazing little boy. He was the sweetest baby, had the biggest smile, beautiful curls, cheeks that screamed kiss me, and could melt a Mama’s heart in seconds. He was the perfect baby.

Now, he is the perfect little boy. To those on the outside looking in, he seems far from perfect, the truth is, D is exactly the little boy that God made him to be. God knew what D’s life would be like. He knew what our lives would be like living with D. God even knew the life that my younger children would live as his siblings.

For as the Heavens are higher than the earth,<
so are my ways higher than yours
and my thoughts than your thoughts.
Isaiah 55:9

I struggle with D’s autism, that is no secret. While I know that God made D perfectly, and his autism  will (and does) glorify God, I don’t like autism! Autism stinks! There, I’ve said it.

I love him with all my heart and soul, I do everything within my power to make life easier for him. I spend time with him, I make the food he likes, I get the things that he likes, I buy things and do things for him that make life easier for him. I do it all because I love him. Not that I’m a martyr, but because I’m his Mommy, I love him, and I want to!

I know how much I struggle with his autism and how much other members of our families struggle. I cannot begin to imagine what it would be like to live in his body, in this world that does not understand, and a lot of the world that does not want to understand him. Whatever I can do to help myself, him, and others understand, I do. Whatever I can do to make his life easier, I do.

Autism keeps him from being able to self regulate in stressful situations. It keeps him from being able to understand that our plans and our reality are often very different. It keeps him from being able to adjust when that happens. Autism keeps him from having true friends because he does not understand how to be a true friend. He tries, don’t get me wrong, but he doesn’t understand the reciprocity in relationships. Autism creates such extreme anxiety in D’s body that his body attacks him (anxiety/panic attacks) and because he does not understand how to process those feelings in a productive way, he lashes out. Those lashings often come in both verbal and physical attacks. Unfortunately, those attacks are targeted at those of us who love him the most, and it hurts!

You see, those attacks hurt not only our bodies at times, but they hurt our hearts too. More than the attacks on me hurting, the attacks on others who love him hurt me the most. The sun rises and sets on D in Spike and Samoo’s world. They love D with the type of love that every younger sibling should have for their older one. They look to him for guidance, love, and direction. They believe he is most wonderful brother, but then he gets upset about something most find irrelevant, and lashes out at them, and they are heartbroken. How can the brother who they love so much lash out at them this way? Without a doubt all three of my little ones suffer from some degree of PTSD (post-traumatic stress disorder).

Raw honesty…Sometimes, when he is lashing out, it is hard to have a heart for him. It is hard to be compassionate and understanding. Why? Because I don’t always understand. I just can’t wrap my head and heart around it. I can’t understand how the people he loves the most are the ones who get hurt the most. 

Yes, I get the whole comfort zone thing. I understand that he waits until he is somewhere that he is loved unconditionally. I get that, really I do, no lessons on why needed. BUT, when it comes to my heart, it is still hard.

It breaks my heart because others are hurt, because he is hurting, and because he doesn’t mean to hurt others. I know he doesn’t mean to. While in the heat of things he truly cannot admit it, but I know by little things he says that he is hurting and broken because of the behaviors he has exhibited.

Has your child ever stood against a padded wall, in a psychiatric holding room with a 1 way window and cried crocodile tears and said, Mommy, I’m so sorry. I just want to be a normal kid. 

Has your child ever told you out of the blue, Mommy, I know why they call it aspergers…because it makes you act like an ass.

Have you ever been driving down the road and heard your little boy say, Mommy, I’m such a bitch. I’m mean to people and I just don’t know what to do to stop.

Has your little boy ever told you, Mommy, if I could just die everyone else would be happy. I wouldn’t be mean to people and no one would be scared of me anymore.

No? Well, when your heart experiences the break of hearing your baby say these (and so many other things), then you can tell me that I am horrible because I hate autism. When your son, who is as tall as you are lays in the floor crying, flailing in ways my 2 year old never has, and tells you, Mommy, I just can’t stop! I want to stop, but I can’t! I hate myself because I can’t stop!

When you experience that heartache, then you can judge me for saying I don’t like autism. 

Let us hold unswervingly to the hope we profess,
for He who promised is faithful.
Hebrews 10:23

**Note: After I started this post, D had a meltdown. Last week the autism specialist who we call  the D Whisperer ordered him a Power Rangers costume for his last big incentive. She told him, I ordered the costume and it will be here on Thursday next week (today). I will give it to Ms. Autism Support Aide and she will give it to you on Friday. However, you have to come to school every day and on Friday, the last day of school, you’ll get it. Well, in his world he stopped hearing anything she said after, it will be here on Thursday. She was very direct and specific with him so that he would know exactly what to expect, but when he did not get it today (and it was the next to the last day, anticipation of the sub teacher tomorrow, and so much other stuff going on) he became overstimulated, the perseveration and anxiety became too much, and he just melted. **However, while he was melting he never hit anyone, yelled or screamed at anyone (except telling them to go away), never cursed anyone directly, and never threw, kicked, or broke anything.**  Can I get a great big *For The Win* from the crowd, please?? 

14 thoughts on “My Autism Struggles: Part II

    1. Joy, thank you so much! He is such an amazing kid and I know that without the autism he would not be the same kid. That said, I sure wish I could take away the emotional pain it causes him. 🙁

  1. Oh I get it!! I have had so many experiences just like yours with Jordan!’
    You are one if the strongest people I know and love and D and Jordan and Lex they are gifts from GOD!!! I remember when D loved for me to paint is nails!!! Wonder if he’d still like that!! Lol!! I feel your pain and ” get it” you just stay strong!! Love you!!

    1. Oh my goodness, Beth!? I was telling someone just the other day about the trip back after the first time. We stopped at a McDonald’s in McComb, MS and the girl was flabbergasted that he was my kid, but more so than that, she was flabbergasted that I let him out in public with painted fingernails. HAHAHA Yes, these kids of ours are definitely gifts from God and I am so blessed to know and love all three of them!!! I love you too and would move mountains to come hug your neck! 🙂

  2. What a profoundly moving post! Thank you for your bravery and your honesty. My daughter’s S.P.D has brought me to tears before and she does not have autism so I cannot fathom what your day to day is like. Your kids are blessed to have such a superhero for a mom!! Keep up the good fight.

  3. I am right there with you. People get so offended that I hate autism or that I would wipe it out of Tate in a minute if I could or God forbid that I medicate Tate for his autism. They say I don’t like who he is. He does not like who he is with autism. At 13 we have come soooo far with countless hours of occupational therapy tons of therapy at home. If people even understood what version of normal our lives are just to achieve and make a foot hold in our gains they would Commend and not condem. We between that and really great doctors that have hit the nail on the head for the moment with meds and a school that is mostly trying to work with us we are doing what we consider great right now meaning part of other’s normal. But I will take it and thank God for it.

    1. If people even understood what version of normal our lives are just to achieve and make a foot hold in our gains they would Commend and not condem.
      Cynth, I have to think that if people knew what “version of normal our lives are” they would run far, far away! lol

  4. Oh my friend, my heart breaks for your family and especially for your precious boy! Such grief and heartache for one so young! You’re in our prayers!

    I can only understand the merest shadows of what you go through from your words, but I have learned the truth of these words through my own trials, “if God brings you to it, He will bring you through it.” Lean on Him. His power is made perfect in our weakness! Blessings!

    1. Jamie, thank you so much for your sweet words. You’re so right, God will bring us through it. When D was in residential treatment, the verse that I recited and have no claimed as my verse to live by was, Nehemiah 8:10 …for the joy of the Lord is my strength!

    2. Please permit me to express my greatest appreciation for this excellent article you have published. You are truly a terrific expert in this subject. The important tips represent a lot to me plus my family. Please understand that your kindness to share those tips with people like me during this difficult time really meant a lot to our house.

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