The Never Ending Childhood: Adults With High Functioning Autism
Precious in His Sight
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 around him, like a halo. He tugged at our hearts and we answered. After accepting the referral we were stuck in a maze of red tape. Our infant was becoming a toddler quickly as the wheels of immigration turned slowly. Reports came few and far between. The assessments said he was delayed, but no cause had been identified. We knew that there were challenges ahead but that face! After 7 long months, he arrived on January 13th. Escorted and carried by a sweet lady named Glynnis, he appeared at the end of the jetway. 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. And so it began.
You gotta have Seoul..Korea
I'm in love with a child I haven't met yet
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'm honest, I couldn't help but ask myself, 'What have we done? We are the wrong people for this job!". This thought would be immediately followed by guilt, and the cycle continued.
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.
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.
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..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