Cry Out to Jesus

I’ve been crying out to Jesus in despair for several hours. Living with autism isn’t for the faint of heart. In the last four hours, I’ve been spit on numerous times, hit repeatedly, had blocks, toy cars, a toy cash register and anything else he could find to throw at me. My hair has been twisted and pulled, and stabbed with a fork repeatedly and raising my voice doesn’t help and letting the tears and sobs come doesn’t either.

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I don’t know what triggers these times or why Tyson goes thru these moments. I don’t like them and I hate that in those moments I just want to give up and throw in the towel, but I can’t. He is depending on me to get him through all he goes thru. He depends on all the people in his life to help him learn and grow.

Since he came into our lives almost four years ago, our lives have changed drastically from what we had imagined. There is no time to just sit with my husband and watch a movie, or take walks or have any type of just us time. When Tyson is asleep, that’s when we rest or frantically try to accomplish housework or tackle projects we can’t do when he’s awake.

He plays hard, throws himself on the floor, bangs into and on things, runs into walls, constantly climbing and jumping, banging his head on the floor, into the back of the chair and into other people.

His attention span is only a few minutes unless he is viewing videos or television shows he likes, but we know too much screen time is not good for any child, especially with one that seizures can be triggered by videos he watches depending on the content.

I love this high energy child that is constantly wanting to go places and repeatedly talk about what he knows. Vacuum cleaners are his favorite subject. He wears headphones when they are turned on, but when they are turned off, they are his favorite “toy” of all time. We have to limit his time because of the fixation. He can share with you every single detail and when its time to return them to their storage area, he clings to the vacuum, becomes angry and agitated and won’t let go.

We appear like a typical family outside of the walls of our home. We work really hard to keep him safe and keep him from having outburst or hurting others when we are out. He is always holding our hands, wearing a safety harness, in a shopping cart or any other means necessary to go out into the world. If we go to a park setting, there must be at least three people with him or the area must be fenced in. He loves going and playing at the park, up and down the slides; swinging with wild abandon, laughing and wanting more.

Our home is never clean. Never spotless. Every day, there are toys mixed with food particles from him being angry and throwing bowls of food off the table because he isn’t hungry or doesn’t want what was placed before him. Highchairs don’t contain him anymore. He’s too smart for the five point harness. He knows if can’t get the latches undone, he can wriggle out of the straps with a little bit of determination and grit.

He is so smart. He can figure just about anything out on how it goes together or how it comes apart. He can count to 13 on his own, the number of stairs in our home. He can recite the alphabet and label each letter if asked. He calls himself Ty. Tyson is too hard for him to say right now. He can cook the most amazing meals in his tiny kitchen. He loves mixing and pretending to cook just as much as he likes helping me mix concoctions in my kitchen.

Since beginning this post, most of his toys have been bagged and removed to another room. The TV has been shut off. Music has been turned on. I’ve had to stop writing multiple times to get him off of furniture he should not be standing on, out of paperwork cabinets that hold his care notebooks and IEP plans. Tell him no repeatedly because he wants to make raspberry sounds and realizes he can spray you with his saliva. Position my chair in such a way that he can’t climb on my desk to mess with the mini-blinds covering the window above my head.

In between, he’s had a cup of blueberry yogurt and a cup of milk for a snack and I’m using this opportunity to help him say blueberry yogurt. His language disorder for expressive language is a struggle. His version of blueberry yogurt is boo og. Every moment he speaks is used for speech language therapy. Those moments don’t just happen at school or in speech therapy appointments, every moment he’s awake is when it happens.

Ugh!!! He just drew on his feet with a green marker and dumped his yogurt on the desk! So much for the calm.

The struggle is real. Its a glimpse into living with autism. A mere 5 hours out of 24. One moment he is hugging me, giving kisses and the next he is trying to break out the front door glass with his wooden toy hammer.

I am looking forward to when his batteries run out so I can take a shower and just sit still for more than one second. Right now we need to be in a padded room with nothing but us. I just was hit in the head with his tiny shoes that pack a powerful punch.

My joy comes from the Lord. Not my circumstances. I am so very thankful I have Jesus in my corner.

To the other families that “do autism” everyday, please know you are not alone in your journey. Even though it feels like it.

To everyone, may you know how much Jesus loves you~in every moment you live.

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

 

 

 

 

 

 

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Author: Carlene W.

I am a very optimistic person. I love Jesus with all my heart. I always try to extend grace whenever I can, help others in need and enjoy spending quality time with family and friends. I am also helping to raise my grandson with Autism and advocating for him as well.

4 thoughts on “Cry Out to Jesus”

  1. Carlene what do th e specialist say can be done, medication to calm him, t time out in his own padded room , there has to b e m I millions of folks t hat have already.gone thru this, what can do to make life easier on the family. It is too difficult for families to just be on the defence of this diagnosis. Are there clinic available a liable that c a n help him have less tantrums. Can u use MRDD to use respite care to give yourself a couple hours per day to just have your own time. It use to be available when my kids were growing up

    Liked by 1 person

    1. Peg, as I’ve explained before, there is no one size fits all treatment. Calming strategies that have worked before, for whatever reason, are not working as well now. No one seems to have a clear answer, that I’ve found yet. His new medication for the ADHD helps him sleep, and the hope is it will also help him to be more focused during his school time hours and stay on task. If they give him traditional medications to treat ADHD specifically, those medications make his preventative epilepsy seizure meds less effective and seizure activity may become increasingly more. In order for them to remain under control, dosages would have to be increased which causes agitation and irritability/aggression. It is a vicious cycle. We are and have been working with Developmental Disabilities services through our county since he was born. ABA is always an option but is not currently covered under his insurance.
      The frustration we face here is real for so many families today. We are all doing the best we can, and we all have days like this one described in this post. Many days we hold it all together. Some days sharing the real struggles are necessary to shed Awareness and bring acceptance. Bless you for your concern.

      Like

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