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The Never Ending Childhood: Adults With High Functioning Autism

Megan has been married for 26 years and has adopted two amazing sons. She is a registered nurse and community health advocate.

Precious in His Sight

I always knew I would adopt. for me it was just a matter of when and how. I thought maybe later in life. God had a different plan. We adopted our oldest son internationally in 1995. Michael came to us as Bum Jin Kim, a sweet face on a website for children with special needs. It was the early days of the internet when email chains were making the rounds. We were on a prayer chain, a family praying for children waiting to be matched. It was a bit harder to match these children ..they had delays or birth defects. This is especially true in South Korea where cultural taboos still exist. We diligently prayed that this child be matched with the right parents. We didn't realize he already had.

It's a Match. And wait.

John and I fell in love with Michael's picture. There was a light shining around him, like a halo. He tugged at our hearts.. it was like he was calling to us..and we answered. After accepting the referral, unfortunately we were stuck in a maze of red tape. Our infant was becoming a toddler quickly as the wheels of immigration moved very slowly. Reports came few and far between. when we accepted the referral, we were told the child has "global developmental delays". We wanted more information so that our pediatrician could formulate a plan. The assessments gave very little information and no cause had been identified. We knew that there were challenges ahead but we had fallen in love! After 7 long months, he arrived on January 13, 1999. Escorted to the USA by a sweet lady named Glynnis, he appeared at the end of the jetway, a vision in a fur lined parka. No tears, just a wide eyed look of surprise! As he took the teddy bear my oldest son offered, I scooped him up for the first time. He made no eye contact but held on tight to me. He was very quiet..wide eyed, taking it all in. That ended the moment we arrived home. Once in the house, Michael ran in circles, as if he had never felt the joy of running before. Every experience we took for granted was meaningful in a new way.

You gotta have Seoul..Korea

The early days-what have we done?

In the first days after Mike arrived, we were truly overwhelmed! We were joyful at his arrival, yet feeling very intimidated by what was ahead. If I am totally honest, we couldn't help but ask ourselves, 'What have we done? We are the wrong people for this job!". This thought would be immediately followed by guilt, and the cycle continued. We were feeling inadequate and overwhelmed. That feeling continued for months. Michael was incredibly active and never stopped from morning to night. Every cupboard door was opened and tantrums thrown. He would allow me to hold him, but preferred to back into my lap.he was like a tight, little rosebud that slowly opened up over several months. He could feed himself and was a steady walker, but give him a few toys..he had no clue what to do! The assessment team soon came to the house. Speech, OT, PT and behavioral therapy would begin. I was happy to have support for Michael but realized I just added another job to my plate..casemanager. John and I were willing to try any therapy..weighted blankets, nightly massage. Anything was worth potential benefit. Slowly, but surely, these efforts made an impact. Finally we could hold him, connect with with him. Although we feared the day wouldn't come, somehow the Lord connected us to this sweet child and life has never been the same since.

He was like a tight little rosebud....


He's off and running...

As Mike grew, we grew along with him. I became his primary caregiver, i.e. Tiger mom, as my hubby simply couldn't get to every appointment.. Finding the BEST evaluators, therapists, and doctors was a constant pursuit. We would build relationships and trust, only to find out suddenly that they were leaving. Such is the climate of human services staffing...constant turnover. It was a constant process of starting over. The diagnosis came of autism and ADHD in elementary school. Nothing that we didn't suspect. Still, the finality of the words hot like a ton of bricks. Somehow, you rebound and soldier on, knowing your love and belief can alter expected results.

As he entered middle, then high school, things were made more challenging by social pressure. The bullying intensified and destroyed Mike's confidence. Behavioral issues cropped up, issues at school and suspensions. Mike spent time in outpatient, inpatient and residential care. It is heartbreaking when you can't find something to make things better. All we could do was pray for wisdom and strength....


All grown up..sort of

Michael is now 20 years old. A high school graduate, he works part time in retail. He is a terrific person..unusually social and engaged, funny and sweet. My husband and and I are very proud of him! He has so many things to offer and we will be there every step of the way. He will need us to be. Although he is 20, he will be a man and a child forever. Sweet and somewhat innocent, yet physically mature and strong. Desiring independence, yet very dependent and in need of supervision. Not able to be fully an adult, yet not a child either-caught in the middle. How do you know which things to let them try to manage and which to hold back?

In the wings...

My husband and I have found that a balance between guardianship (both legal and practical) and finding his maximum level of independence is best for all. Involving him in all decision, giving clear information and truly respecting his opinion is what is essential for a healthy home life. After all, this is a life long living situation and we are committed to make it a blessed and happy one.

The future

So, we plan for Mike's future, finding ways to focus on his strength-his sweet nature, kind heart, and ability to organize like no one else! We also plan for the day when we are no longer here, knowing that it takes a village. We are so grateful for our village..and try to bring awareness in our community through the question, "Can you be part of a village for someone else?" Who do you know that has an adult child with disabilities? Be part of a community of support, an extended family that surround these amazing young adults with encouragement and love.

© 2017 Megan Swope

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