The 2nd of April is World Autism Day and in honour of that, we have been so blessed to have been given an interview with Colleen Swindoll Thompson, the third of four children of Chuck and Cynthia Swindoll.
As many already know who Chuck Swindoll of Insight for Living is, I will direct anyone looking to learn more about him to the Insight for Living website. I would also encourage you to read Pastor Chuck's blog.
Colleen's insight on parenting a child with special needs can be found on the Insight for Living Special Needs Blog and I would encourage any parent or family member of a child with special needs to bookmark it and visit the blog often!
I am so pleased to introduce you to Colleen Thompson. Colleen’s love for Jesus Christ began as a child; she is Chuck and Cynthia Swindoll’s third of four children. Colleen is a graduate of Trinity University with a major degree in Communication and two minors, Education and Psychology. Colleen began her graduate work at Dallas Theological Seminary but her plans changed with the birth of her third child Jonathan, who is diagnosed with multiple disabilities. Currently, Jonathan’s diagnosis includes: autism, intellectual and developmental disabilities, global anxiety and post traumatic stress disorders, Tourette’s syndrome, ADHD, Obsessive Compulsive Disorder, Oppositional defiance disorder, separation anxiety, and social/self confusion from years of bullying experiences.
In 2007, Colleen accepted the position of Director of Special Needs/Disability support at Insight for Living. Currently, Insight offers a special needs topical page, blog page, additional resources and suggestions for supports and services, books and advocacy direction, and a face book page that has taken off. She is also involved in speaking and teaching which focuses on the truths of God’s word and it’s application to every day life. Friends, family, and those who hear Colleen’s messages say she is refreshingly honest, deeply sincere, graciously understanding, tenderly empathetic, and steadfast in her intimate relationship with Jesus Christ. Colleen and her husband Toban are a blended family; Colleen’s children, Ashley (18), Austin (17) and Jonathan (14) and Toban’s children Cody (21), and Riley (18) enjoy time together along with their three dogs: Desoto, Sherman, and Honey. Personally, Colleen enjoys reading, gardening, and just being with her family.
When I asked Colleen if she'd mind being interviewed for World Autism Day, she didn't hesitate to say yes! She is articulate and gracious and real. I am so thrilled for you to get to know her so without further ado...
RR: What was it like growing up with your dad being on the radio and pastoring such a big church?
Colleen Thompson: Dad was always the same at home or at church or anywhere. I’ve learned from other pastor’s kids how rare my growing up was….I was never told to be or do or act a certain way because “dad was a pastor”. In fact, I am deeply saddened when I see or hear of parents in ministry positions forcing their children to fit some mold. I am profoundly proud of how the Lord has used my folks; and very thankful they remain unimpressed by social status. Words like ‘big’, ‘famous’, ‘popular’ and other words people use to define themselves were never stated in my home. One of the best characteristics of Jonathan is the total lack of societies ‘success’ strata. My family desires to honor the Lord and follow His direction which is eternal; social media is temporal and candidly, unimpressive. (If I may be so honest.)
RR: How did you meet your husband?
Colleen Thompson: This is always a very funny deal. Following my divorce, I never planned to date or marry ever again. However, my children felt I needed a partner in life; thus chose to put my name on one of the dating web sites. I can’t believe I’m telling you this. I made a bet with my daughter that no one would respond to a 40 plus year old woman who was NEVER going to date or marry and had a special needs child. Well, I lost the bet. Toban patiently endured my ‘never, ever, ever, never-ever going to marry or date again’ words; was consistent, loved me into trusting him, and we shared experiences of his own children-one having childhood epilepsy and another being born with half a heart. We married April 4, 2009; our children continually laugh at our humor and love for each other. (They think we are so weird…which we relish).
RR: Can you tell me about your children?
Colleen Thompson: How long do you have? = ) They are incredibly different and I love being their mom. Ashley is my oldest-20 on November 1st. Austin is 18 in May, and Jon is 15 in July.
Ashley is very strong willed which, as we have talked about, is a fantastic gift when aligned with Christ but a tremendous challenge when focused on self. She has the “Swindoll” gift of art, writing, and intellect; yet is very tenderhearted and loving without condition. Ashley has a way with animals and is studying to be an exotic veterinarian.
Austin, my second child, is very fun-loving and has a great sense of humor. He’s incredibly social, also gifted intellectually, and is most like my father…extremely intuitive and spiritually sensitive. Austin seems to understand others easily and remains very involved at the church. He has several leadership positions there, and also enjoys acting and serving. He just won 2nd place in a cancer support half marathon and plans to run for other charities as well.
Jonathan is…there is no way to describe Jon. He is tender hearted, incredibly determined and enduring, candid, without pretense, socially unimpressed, and also wounded by this world’s treatment and view of differences. Of the three children, I find Jonathan to be the most sensitive-spiritually aware in ways I cannot explain. My children has their own journey’s; one which includes deep, heart breaking pain; forgiveness, struggles with God’s sovereignty, challenges and worries siblings face with a special needs brother; and have cultivated a resiliency I highly respect. I believe wise counselors are needed when the heart’s in need of healing so we have all committed to the process which has included/includes therapist’s and spiritual guidance.
RR: How old was your son when he was diagnosed with autism?
Colleen Thompson: Jonathan was diagnosed with Autism and intellectual disability (previously called mental retardation) in December, 2000. Only 1 in 10,000 children were diagnosed with autism at the time; I knew nothing about the diagnosis nor did I know anyone else familiar with it. It was a very lonely, difficult time.
RR: When did you first notice that something might need investigating?
Colleen Thompson: When Jon was born, something wasn’t ‘typical’. He cried and cried and cried…he threw up everything, didn’t sleep more than an hour at a time, and was never settled. I thought Jon’s first two years caused his delay’s; in his first two years he had countless ear infections, three sets of ear tubes, asthma and allergies, digestive disorders, immune deficient, 5 RSV illnesses and many diagnosis of pneumonia. He had his tonsils and adenoids removed at age two which, we all thought would solve his delay’s. How does one learn to talk and walk when they feel horrible all the time and cannot hear???? It’s what I thought at the time. But, when he continued to be severely delayed (age 3 he was developmentally about 15 months along and weighed 18 pounds); others suggested we check into some neurological and terminal issues.
RR: How did you first learn his diagnosis and what was your reaction?
Colleen Thompson: Jon was evaluated by a pediatric psychologist at age three who diagnosed his autism and I.D. I remember many feelings…relief, confusion, loneliness, like the bottom of life as I thought it would be just disappeared. I hurt for Jon because his life would now always be hard and misunderstood; which has been part of God’s shaping my own faith to this day. I reacted to it like I do with anything I don’t understand in life…I spent countless hours researching, learning, studying, watching him, reading, and seeking help. Today we are so familiar with words like sensory sensitive, auditory processing disorders, GFCF diets, and various therapists; but 14 years ago…very little was studied. Because Ps. 139 is true-every person is made uniquely, I committed to learning about Jon (and my other children) so I could become the kind of mother they needed. Many mistakes happened (and still do) along the way; but my resolve is to honor the Lord with what He allows in my life.
I will say, Jon’s autism diagnosis was simple compared to his regression and additional challenges we encountered when he was 8.
RR: How has his diagnosis changed your family?
Colleen Thompson: It has changed everything about our lives. Autism was relatively insignificant until Jon regressed at age 8. His regression happened so suddenly…in about 3 weeks, he regressed by 50% and more in every area of functioning. I had to take him out of school, and begin the testing processes all over…terminal, neurological, physical, emotional, intellectual….it all started over. That is when my faith took a huge nose dive. I had followed all the rules, prayed and prayed, done the diets, therapies, home and school supports…and he began to quickly ‘slip away’. Testing revealed the diagnosis of: severe Tourette’s syndrome, ADHD, OCD, ODD, global anxiety, and possible seizure disorders. Then, two years ago, he was diagnosed with severe PTSD, separation anxiety, and irreversible brain trauma.
RR: How has it affected your family's day to day life?
Colleen Thompson: How is that answered…we live as scripture says…James-without knowing what tomorrow will hold; Paul talking about yearning for heaven but committed to knowing Christ while on earth, as Matthew 5 talks about the beatitudes….to be blessed with weakness and hardships; I Peter’s words in chapter one on the fiery ordeals that shape us (if we allow it to); and have a perspective that very few seem to have. Not much in this life is-in and of itself-satisfying…but we have learned to laugh a whole lot, forgive often, give space when needed, say I’m sorry, relish in the ‘easy’ moments, fight fair, and be filled with mercy and grace because we are in such need of it. I have to also say it has greatly illuminated the level of judgment and rejection that continues to exist in the church today.
I’ve learned that 98% of families with a disabled loved one encounter most harm from “Christians”. This doesn’t mean it’s everyone, but we have a long way to go in learning about tenderness, acceptance, grace, and mercy. It has also caused me to be so close to Jesus; when I think something Jon’s endured is beyond Christ’s understanding, I read His words about the pain and injustice He endured and simply cry over it all. Tears are okay in our home; candid and honest soul work is openly talked about. I don’t force my kids to “like” life or put on some fake smiley face…Christ didn’t, He doesn’t tell us to do that today, and the lack of authenticity only complicates life. Practically, life is different every day because Jon’s challenges change every day…he is affected by sleep, the weather, sound, movement, anxiety, change….we take it moment by moment sometimes. Of us all, he is the strongest as his body doesn’t cooperate with this life yet he keeps moving through each moment the best he can. It’s pretty simple, very humbling. He is a living picture of how God must love us, care for us, and desire us to fall into His arms for help and strength.
RR: Being a family that was already involved in ministry, how has having a child with special needs changed your ministry focus?
Colleen Thompson: Jon’s life has changed everything about my perspective on life and thus, what it means to honor the Lord and obey His call every day. I have come to learn all of life’s crisis…deaths, divorces, cancer, ill health, emotional and mental disorders, losses, grief’s, and why’s are revealing points, not really the things to overcome. Yes, we want good health, few losses, strong marriages, mental and physical stamina….but pain is the conduit ….the channel which reveals the truest condition of our soul’s. That is what God is about…shaping our soul’s, not how comfortable or happy we want to be. Ministry is an overflow of God’s work in one’s soul…sometimes only revealed to God and then when chosen, God uses one’s life to offer hope and comfort that He provides. I’ve always had a very soft heart and awareness of spiritual things; Jon’s needs have provided me a irreplaceable view of His love for us.
Jon can’t understand this life in many ways because his mind and body aren’t equipped for it; yet isn’t that exactly what God tells us when the fall occurred. Because of our broken nature-sinful and disabled-it isn’t possible for a person to understand God’s ways, His thoughts, His timelessness, anything really. Like Jon, not understanding or being able to grasp things in life is constantly hard….so it is as a human being-thinking we know or have a right to get this life together is a false hope or belief. As a result, the Lord is my everything and I long for others to know this kind of freedom, grace, mercy, and truth. To be at ease with their failures, to be tender and compassionate; and truly believe God is at work THROUGH me, not because of me.
RR: How has this changed your understanding of the Bible and God?
Colleen Thompson: I think what I’ve said earlier defines this. I had a knowledge of God, but many false hopes and beliefs about Christianity. Faith was a “doing” thing….follow the rules or steps and BINGO, life is simple. What rubbish. Never is that part of theology; great theology brings such light and hope to this temporary place called earth.
RR: What advice would you give to parents just learning a similar diagnosis? What resources have been the most help for your family?
Colleen Thompson: advice…hhhmmmm, a lot of advice I guess comes through what I write on the Insight for Living blog posts. Accept you will cry often, loss will always hurt, you will be confused and lonely at times, misunderstood and judged; but nothing at all will exceed what Jesus endured on earth so earnestly and purposely dive into truth…God’s words, His promises, His commands, His grace, His truths…it’s the ONLY firm ground one will have. I would suggest getting connected to social places like what we have through Insight’s facebook page…to learn and listen; to ask questions and advocate for the one you love.
I would advise seeking a wise counselor…there is too much hurt to take on alone; men need different support so a man needs good, faithful, wise men to connect with. Finally, know that you will never surprise God with your thoughts and feelings. Keep expressing them to Him…in doubt, say I’m in doubt, angry…tell Him you are angry; afraid or depressed or tempted or whatever….tell God and ask Him to meet you where you are…to bring you one little hope or promise or something that helps you know He is with you. Sometimes it happens, other times He seems quiet….faith is what we believe when we cannot see as well as when we can. Finally, allow the Lord full control of your soul. Admit what comes up…selfishness, pride, impatience, whatever…the pain is to humble one’s soul and allow Christ to be established on the throne…nothing of self, everything of Him. That IS the purpose in every part of life.
Again, our heartfelt thanks to Colleen for sharing with us on World Autism Day!
Also in honour of World Autism Day, I'd like to share our Waiting Children who have been diagnosed with autism. What better day than today to advocate for them?
Girl, Born June 11, 2001
Diagnosis: childhood Autism
Denver is physically healthy, with no medical concerns. He has been diagnosed with childhood Autism. We do not have a lot of information on his current skill level.
He is listed as having delays in every aspect of his development. He participates in therapy and has a 1:1 caregiver that spends time with him each day. He is very attached to this caregiver
and has a good relationship with her.
Additional photos and a video are available of Denver.
He is said to have encephalopathy (unspecified disease of the brain), Childhood autism, and moderate mental delays.
He also has vision problems: Convergent concomitant strabismus (crossing eyes) and hypermetropia (far-sighted); and is said to be anemic.
More photos available.
The following do not have an official diagnosis of autism but have been suspected of it. They do still need families, however, so I'm including them!