THE REALITIES OF AUTISM–By Carole Norman Scott–5-15-21

I am sitting at my computer…feeling I must write something about Autism as it stands today in our lives, but I want to be encouraging, yet tell the truth.  So, please bear with me as I attempt to share my heart with you…very much like you were reading a page of my journal written today.

Our autistic son, Ben will be 59 on July 4, 2021.  Our journey has been full of both joys and sorrows…but with God’s help, we have lived a good life, and Ben has always continued to be a part of it.  If you’ve read any other of my “renderings” on my blog, you know that Ben lived at home until he was 13, and then his meltdowns became more than we could handle physically.  Though not even full grown yet, he was very strong when in that state of mind.  He moved away from home 46 years ago, but has come home for visits 3 and 4 times a year for a week at a time, and we have gone to visit him many times, and taken him out with us to eat and do things he enjoys.  Praise God, it has all been peaceful and pleasant on those visits, and he was a great comfort to me in all those instances.  On Christmas of 2018 (while at home) Ben got upset and had a meltdown.  Although it was not “full-blown”…it alerted us to the fact that we were now over 80 years old, and we DEFINITELY could not handle the situation at this point.  So, we had to make the sorrowful decision to not bring him home again, but to visit him at his living unit four hours away, so that we would have help there if we needed it.  That too, worked well, and we were SO thankful.  But then…Covid 19 hit, and clients and staff at Ben’s place of residence began to test positive for Covid, and were quarantined many times for over a year.  It was a necessity to help keep it from spreading…perhaps causing death to many.

Then, on a trip to Breckenridge, CO, 2019, I found out I had heart problems.  Because of the altitude, I had difficulty getting my breath and ended up in the hospital.  In the last two years , it has worsened, and many different hearts medicines have been taken.  Some have helped and some caused other problems that were very hard to deal with.  That has so far curtailed us driving to Conway, AR to see Ben.  We’ve had one Zoom meeting and got to watch him open his Christmas presents from us, but it was also VERY hard to communicate in that manner.  This Covid went on SO long that we haven’t seen him since last October (to actually be with him).  In the meltdown in 2018, I hurt my knee, and that took over six months to mend.  Then, two months ago, I ran my ankle into the open dishwasher door, and hit my inside ankle bone on my right leg really hard.  That doesn’t sound too serious, but when you’re on blood thinner, a jolt like that can cause extreme bruising and pain, and it has taken eight weeks to get over that trauma.   From the inactivity of that injury, my body began to fill with fluid, and it became harder to breath.  Then my legs began to swell…so again, that affected any trips to see Ben. 

All this to say, if any of you out there have not made arrangements for your autistic child when you and they both get older (we are now 83)…please do not put that off.  NO ONE wants to make that HARD decision about their loved one. But being realistic…it may be a necessity!  Not always because of the autistic child and their behavior, but because of the parents health and aging process. 

We have had the best of both worlds even though Ben had to move away.  He was well taken care of in every way.  It doesn’t mean that hard or bad things never happened.  The best run place in the world cannot keep unexpected outbursts from the autistic and every other kind of developmentally delayed individuals.  But, Ben had people who were patient and caring to see to his needs, excellent medical care, and he also began a growth in independence that he would not have at home.  God is good ALL the time!

I was thinking the other day…there were five “hallmarks” in our lives with Ben of sadness:

1. When WE first realized something was not quite right at age two…and had to watch him “slip away” into his own little world.

2. When he was first diagnosed at age 4, and the word “autism” was used (1966)…our world shattered.

3. A sojourn for Ben of six weeks to a facility where they were supposedly working with autistic children.  That did NOT turn out to be helpful AT ALL.  Ben was six at the time. 

4. A big meltdown at home at age thirteen that precipitated him moving away from home. Heartbreaking!

 5. A move for him in 2013 to a smaller facility two hours closer to home with only ten people in the housing unit instead of thirty.  All went VERY well for two months, and then…it all fell apart.  Ben got so upset that he ended up in a Psychiatric Hospital nearby for several days.  When calmed, he was home for several weeks (and all went well), and then he moved back to his original facility.  All of that was SO difficult, as the two months at the new place, we heard more good reports than we ever had, and then it ended abruptly.  All our hopes seemed to once again be shattered.  But, when Ben moved back to his former home, all the residents clapped and cheered when they saw him, and said, “Ben is back, Ben is back!  They wanted to help him move his things back in.  He had a BIG smile on his face and seemed glad to be there among familiar faces too.

SO, there has been much heartbreak, but many joys too!  Our sermon at church today was about David and Goliath.  Goliath was over 9 feet tall, and NO ONE was ready to take him on and fight him. But David said, the Lord saved me from the lion’s paw and from the bear’s paw and I come to fight in the name of the Lord. He was able to kill Goliath with one stone from his pouch and his sling-shot.   Our pastor ended with this question. ”Do you have a Goliath in your life that no one seems to be able to destroy or quell?” Like David, come in the name of the Lord, and count on HIM to take care of the situation.”  HE is the only one that can handle the battles we face.  He has been with us from the very beginning…opening doors and providing caring people.  God has friends EVERYWHERE!

About autism45

I am the mother of a fifty-nine year old autistic son. My blog, autism45, contains journals, poems, pictures, photography, letters, and other writings and insights pertaining to autism and the spiritual growth we (my husband and I) have experienced from it all. I hope you will visit my blog, and benefit from all I have shared...all that has happened through the years. Take your time, and come back again and again. God bless you and yours!
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