Continuing our series on dual-diagnosis I’ve asked Mary to share her experience as mother and adoptive parent. She shares the story of her son Michael and the decision to adopt their son Brendan. Both boys are diagnosed with Down syndrome and autism.
Mary, thank you for letting me interview you. First, will you give a little background on your family?
My husband Ken is one of 6 kids; I’m one of 2. He grew up on a farm; I grew up in a suburb of Cleveland. Both previously married, I had 3 kids and he had none. I had no experience with individuals with special needs, but he has a younger sister who had spinal meningitis (misdiagnosed) as a baby, and thus has mental retardation, epilepsy, and a whole host of other things.
And together you had Michael. After his diagnosis of Down syndrome, what was the process for diagnosing ASD?
We knew Michael “marched to a different drummer” than the rest of the kids in our DS group, but thought it was because he had been hospitalized so much because of all of his birth defects. A friend whose son is autistic and attended the same preschool suggested that we have Michael tested because his behavior was very similar to her son’s. So I made an appointment with Dr. Bonnie Patterson, who set us up with a behavioral test.
After the very complex start to Michael’s life, what prompted you to adopt?
The decision to adopt had a lot of facets. I had heard Robin Steele speak at a conference about adoption, I had read an article about a family who had a son with DS and adopted another, and being on the MVDSA board, I knew of couples who didn’t want to raise a child with DS.
Both Ken and I felt we had enough room in our hearts for another child, and that we could offer them love and a good home and life. If the child had special needs, OK, but that wasn’t a requirement. But if it did, we already had a wonderful network established and they could fit right in.
Kids with special needs were nothing new to Ken, and I realized before Michael was born, that children are children, no matter their health, quirks, intelligence, or anything else. Everyone wants to have a chance to love and be loved. Everyone deserves a home where they can be accepted for who they are, where all pretenses can be dropped. Unconditionally.
When did you first realize Brendan [Mary’s youngest son] also had autism?
Almost immediately. Although children’s services in Idaho declared that autism was not a factor on his “bio sheet”, if you look at his picture taken when they brought him to Cincinnati, he is doing a major full body stim in the airport lobby.
How do you balance therapy, school, and family?
Flexibility is the name of the game! When the boys were younger, I would schedule their doctor and therapy appointments back-to-back, and since no one could walk, I would pull a large wagon. As boys got heavier and more able, I started scheduling them separately. So if the boys have therapies every other week, we alternate weeks. I try to schedule appointments so that the non-appointment child is in school.
Surgeries usually mean I call my sister for help. We have learned that no matter how badly we may want to go somewhere, or do something, the guys need to come first. Many plans have been cancelled at the last-minute, and while it may be disappointing, pitching a fit and crabbing will definitely not make things any different, and definitely not better! We have learned that our life is like white water rafting. Hang on tight, go with the flow, and enjoy the ride!
What advice can you give to families with similar situations (DS/ASD diagnosis or considering adoption)?
With both things I think it’s helpful to have a heart-to-heart talk with your partner. Discussion of each of your strengths and weaknesses, what your expectations are, and become a true team, where you complement each other (with regards to both becoming adoptive parents or parents of a child with special needs).
Be gentle with each other and yourselves. Be realistic.
There are some days the dishes and/or laundry won’t make it to the sink or hamper, let alone get done.
There will be good times and tough times.
You’ll make mistakes, but we all do. You’ll learn from them and grow stronger. There will be lots of tears, but also lots of laughter.
Every parent of a child with special needs that I have talked with has said the experience has made them a better person – More compassionate and empathetic. And every night, when you reflect back on your day, you can sleep well because you’ll have given it your best shot. And you’ll have given someone else unconditional love, and their own chance to give life their own best shot.
Thank you Mary for your insightful, realistic, and encouraging words! Jenn
If you are considering adoption of a child with Down syndrome a helpful resource is the National Down Syndrome Adoption Network.