55 Days

For the past 55 days, or 7 weeks and 6 days, or 1 month and 24 days….we have been forced to slow down. Spend time with our loved ones. Isolate ourselves from the world. And while, it may not seem like a lot of time; trust me it is when you have a child with special needs and the only way they cope and function is with structured routines daily.

 

Philippians 4:6-7
New International Version
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

For the past 55 days, there has been very little structure inside the walls of this  home as we try to teach or assist with his virtual online learning experience. Work with him to do speech and occupational therapy, while not only learning as we go, but learning to document what is done, whether it takes prompting, or he can do it with simple instruction, so the data can be recorded for his IEP goals. And also doing virtual video visits with his outpatient  therapists for speech and feeding therapy.

I’ve watched him regress somewhat on his poor choice behaviors and its frustrating because he worked so hard to get to where he was, but changing one thing in his routine would have been enough to stress him out, but everything changed.  He couldn’t go to school anymore to see his classmates and teachers. The Corona virus Covid19 changed all that. He had to stop going to ABA therapy, which he did three days a week for two hours. It was too much of a risk. He might become ill. Then his Speech and Feeding therapy went to video visits as well. I think the thing that hit Tyson the most, was no more church. He loves going to church. He didn’t understand and still doesn’t why I can watch church thru a live feed video, but he can’t go to see his friends. And on top of all those changes, household changes were made. His papaw no longer lives with us and we are in a totally new home. The only home he ever knew is no longer ours. And he just turned 6 on Friday.

20200423_110017

He is autistic. He requires a rigid structured routine. And we had one in place. And then the quarantine happened and all our lives changed. He also deals with attention deficit hyperactivity disorder and he runs on all cylinders 24/7. His sleep has become erratic again. A few hours here and there. Which means our sleep patterns are off too.

We see many people walking in a church lot behind our building. I so want to do that with him or take him for a bike ride. My health isn’t so good right now. I can walk about five steps and then I need to sit down because of the aggravating pain in my lower back and legs. Even with my walker, walking is not as good as I would like.  He has started running off again. Not so much to run away, but just to run. I know that must feel great to him. We have had to order another harness. We lost his other one in the move. Maybe someday we will come across it, but we need it now. He picked out the color and seems excited. Maybe with the harness he can be taken out to walk and run off some of his energy.

I’ve come to the conclusion, our lives will be vastly different from what they were before this pandemic happened. Being indoors and on lock-down can make you go stir crazy, but to tell the truth it can also help you spend time with your family that you’ve taken for granted for so long, because you are in it together.  Our state is starting to open up slowly, but I am still concerned. I pray that we take precautions and don’t rush to the point of going back on mandatory lock-down again.

We’ve suggested painting, crafts, jumping on his trampoline, watching movies, and nothing is ever what he wants. He just wants to play and run. He wants to go to the park and be allowed to slide and swing. How do you explain to a 6 year old you can go to the park and run in the grass, walk around the bike path, see the ducks in the pond, but you cannot go play on the slides, jungle gym or swings. It hasn’t worked for us yet. We get in the car and just drive some days, go out in the country, but that is boring for him.

colors empty equipment grass
Photo by Anthony on Pexels.com

He won’t be going back to school this year in person. Our schools are closed til next school year; we hope they will reopen by then. Only time will tell. There is light at the end of the tunnel as his ABA therapy is set to start seeing clients within the next two weeks and he will be one of the first. I pray starting anything that resembles his routine will be a way to alleviate the anxiety he has been dealing with. That all of us have been dealing with.

May you know how much Jesus loves you! He is always available for you~no matter what. Trust Him. Jesus can turn any mess into a message and any test into a testimony.

#HopeAlwaysHaveFaith

Blessings until next time~ Carlene

Published by Carlene W.

I love Jesus. My hope is that I will be able to encourage others and offer hope. I have personal experience with Autism Spectrum Disorder, ADHD, Epilepsy, Sensory processing disorder and multiple developmental language disorders, Fibromyalgia, Sleep Apnea, Post Sepsis Syndrom and Paroxsymal Atrial Fibrillation (Afib). I write about everything and anything, because Jesus is in the midst of it all!

2 thoughts on “55 Days

  1. I’m sorry, Carlene. It sounds like you have gone through a lot of change and it has been stressful for Tyson and for you. I m thinking of you and hoping you continue to find good health during this pandemic and that Tyson finds a new routine or schedule that meets his needs and is fitting for you both. Hugs!!

    Liked by 1 person

    1. Thank you Robyn. It has been stressful but we must keep pressing on. Giving up is not an option. I try to remind myself that if I am anxious of the times we are in right now How much more he must be. Blessings and hugs back to you my friend.

      Liked by 1 person

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