How To Live With Autism After Adoption Recently I sat with Sylvia, a young mother, and talked about her not-so-normal family.
Tell me how you came about adopting your son, Dawson.
We had talked to CFS that we wanted to foster a child. They told us that they won’t contact us for 3 or 4 months, but about 2 or 3 weeks later they called us and said we have a child for you. They had never seen us or never been to our house. We were totally in shock. We went to the hospital and met the child and the social worker who was visibly nervous.
We had no idea why, and they asked us would you foster this child. We said no problem and we signed away….**laughs**. Little did we know. He was born at 1 lb 11 oz. at 25 weeks. we got him at 5 months, and he was 8 lbs. 3 oz. We got him from the hospital. He had been at the Health Sciences Centre for the first 100 days and then at the nursery until they airlifted him to Brandon, the day before we met him. They didn’t tell us there about his condition because they thought that he wouldn’t survive.
As a mother tell me about your experience the first time you realized that he had autism.
Actually, he was diagnosed with autism when he was 3. We fostered him for a year before we adopted him and one week after the adoption he was diagnosed with FAS when he was one year old. And when he was 2 he was diagnosed with ADHD. We had just moved to Winkler, and the occupational therapist said that she thought he has autism. We said, “Are you kidding?” We thought that was unfair to suggest but we went to see the specialist two days later who confirmed that he definitely has autism. We weren’t surprised. We drove him back home from Winnipeg and said to ourselves, “He’s the same kid, he just has a new label so we can research and try and see how we can help him better.”
What is autism? And how does it affect his daily functioning at the point?
Basically, it’s a communication delay and they are very poor at making eye contact, but Dawson is very good at eye contact. Many have no verbal communication but we’re blessed he does. It’s called echolalia which means that he just says what we say and what phrases he has memorized. He won’t come up with his own phrases. That’s okay. We try to teach him phrases that would be appropriate for him to say. With autism, they’re generally very sensitive and the senses are out of whack. His sensitivity is auditory. We stay away from blenders, lawnmowers, and babies. He hardly ever goes outside in the summer because it’s so loud. He now has custom earplugs which help a lot. He also has construction earplugs which he wears on top if we’re going to a very stressful place.
What level of education is he at now?
Dawson is 14 and technically he’s going into grade 9. Realistically his school has been working very hard to teach him some traction from 0 to 10 and he did not reach the goal. It’s way too hard to teach. He does know some basic addition up to the sum of 10. He can read quite well, probably at a grade 3 level, but if you add comprehension it’s back at the kindergarten level.
As a Christian, how has your faith helped you cope with the situation?
Great life! **laughs** We’ve always known that he was the child for us and we were the parents for him. We always go back to that. This is what God wanted for us and for him. When he’s feeling overwhelmed and aggressive we will regularly pray with him. In the midst of being hit, we tell him, “Dawson, stop.” Then he will pray. He repeats what we say so we say in “Jesus name.” At meals, he says, “Thank you, Jesus for his food. Amen.” A sign when he’s stressed he repeats, “I can trust God.” It’s awesome, but that means he’s feeling stressed. **laughs**
Were you ever angry at God or blamed him for what happened?
No. I don’t think so. He’s our child and that’s how he was made. FAS is obviously caused by the birth mother’s choices, and there’s nothing we did to cause autism. The only thing we thought we could have done is use different phrases and symbols. We did our best.
Dawson’s disability has always been there. Has it improved or has it got worse?
I wouldn’t say it’s worse. It’s just different. He will always have it unless miracles happen. It’s just different and he’s sensitive to different things as time goes on. Life changes. We moved to a city where there are different noises and people.
How overwhelming has it been for yourself, and did you wish that you had somebody you could talk to who would understand?
We didn’t have the support groups when he was younger so yes. It’s been absolutely overwhelming. Everybody wishes there was more respite sooner. Preschool programs that would take them. They are very expensive. It’s been very overwhelming and we’ve cried over it many many times. We got so exhausted because he didn’t sleep at night. He comes to bed at 2 in the morning and you try to sleep with him at that point.
He’s been in care since the age of 10, but we are hands-on parents. It’s called a Voluntary Placement Agreement so we voluntarily ask CFS to help us so that means we are still the legal guardians. At meetings with CFS, the social worker says her only purpose is money, so everything else they ask the parents.
Because you’re both Christians and in ministry how has your faith grown as compared if you had a normal family?
I can’t imagine a normal family! **laughs** It absolutely has. It’s more difficult at times but made it deeper because of the trials. That’s where you grow closer to God. When you’re so exhausted and drained you have no place to turn but God. Your parents are at work, sister and brother-in-law are at work. God is your only source of hope and it’s a great way to teach him and say how overwhelmed you feel and ask him to pray. I don’t know how we could have been so involved and tried as hard if it were not for God.
Support For Autism
There are a lot of supports, especially in Manitoba. As soon as a child is diagnosed you would talk to the disability division of the government. They will provide you with some respite, minimally. We got 24 hours a week. Right now the wait list is about 3 years for a worker. The child stays with you those 3 years, and you just cope and hire private help. Some try to get their kids into an outpatient program at St. Amant, ABA program. It’s very intense training. It’s 3 hours a day or someone actually comes in and works with your kid at your house. There’s a high demand for this program. You need to do it early.
There are different play groups. You can pay for different stuff. We found a lot of support in Autism Winnipeg Pace, a facebook group with over 600 members for parents of kids with autism. They help each other and have a lot of get-togethers where you can bring your kids and feel normal because everybody is acting out. This has been helpful, but for us the most helpful has been Child and Family Services because partly because he’s been adopted so we can access them easier. But now he’s in care so we deal with the staff there.
Try to get supports. Get people around you, family, friends who will help you when you honestly feel like strangling your child, or yourself or something because there are days when you’re just so tired and the kid won’t stop. So have supports or something in place. And if you get really desperate, push the system. At least in Manitoba, there are ways and don’t be afraid to ask and push to get what you need.
Sad story – Cop Shoots Caretaker of Autistic Man Playing on the Street
Thanks for your honest answers.
If you are struggling with autism in your family, know that you can’t do it alone, get support and help.
Thanks, Pirkko!