Update for 2012: I ran this series last April. We’ve made new friends this year – friends with children with special needs, and friends with typically-developing children. There are so many good points in Amy’s original post (see below) that I wanted to run them this year as well. I’m hopeful that this year they will be as helpful for others as they were for me last year!
Original Post from 2011:
As the mother of a special needs child, I am often searching for information, answers, direction. I recently came across a blog by Amy Fenton Lee, who writes for The Inclusive Church, a site with many tips for churches and parents with special needs children. Amy’s blog provides a lot of affirmation for thoughts that I seem to constantly have, and for feelings that Tim & I are dealing with on a daily basis. You can read Amy’s blog here.
Amy is currently posting a 5-part series on Mothers of Children with Autism, and that is what caught my attention. I read through the first two posts and felt as though I was reading about myself. With Amy’s permission, I am posting a few excerpts from her blog. You can read the entire post – and I would encourage you to do so. It’s very rich and meaningful.
Here are the parts that stood out to me, taken from part 1 on understanding mothers of children with autism:
“#1 She may feel relief upon the receipt of an autism spectrum disorder (ASD) diagnosis for her child.
While the autism diagnosis may be fresh, there is rarely shock for the child’s mother when a label is finally assigned to her child’s ‘difference.’ The time period between the first hint of a potential problem and the receipt of a diagnosis is at least several months, if not years.
During the diagnosis journey, at least one person in this mother’s circle has questioned her child-rearing abilities.
As much as a parent hates the idea of something being ‘wrong’ with their child, the diagnosis may actually affirm a mother for her intuition and parenting skills. Indeed her instincts were right…her child’s odd or even perceived oppositional behavior served as an indicator of his health (physical or mental), and not his heart.”
These are things that I have dealt with; things that Tim & I discuss on a daily basis. It is reassuring, to us, to know that we are not alone. Amy has conducted research with a number of families and has found that while the results do not always look the same from case to case, these are very real things with which mothers (and fathers) deal.
When our guy had all of his testing in December & January, and as we met with the team to go over the results, we knew the possibility of discussing the Autism Spectrum would be coming. And when it did, the psychologist who was presenting it to us seemed almost sad to have to tell us that he believes our son falls along the spectrum. I vividly remember saying to him, “John, I’ve been trying to tell people this for 4 years! You are not telling me anything new!” With that information, he was almost relieved to be able to tell us his findings. It affirmed, for this mother’s heart, that my parenting skills did not lack; that this child of mine does indeed have some issues.
The big question that Tim & I get is, “How can we help?” We have a busy household, with 3 kids and homeschooling and therapies for one of our guys and preschool for our daughter. We have a lot of our days planned out thoroughly – for our sake, and for our guy who needs routine. We have spent a lot of time trying to come up with answers to “How can we help?”, and the biggest answer is, PRAY. We need your prayers. We look very normal in public – at church, at school functions, at birthday parties. But with the “normalcy” comes the price of “crashing” afterward. It takes so much for Picasso to keep himself together that there is an immense “crash” after we’re back home. It won’t be this way forever, but for now, it is almost inevitable. Hence, the therapies.
How else can you help? Smile at us; don’t be afraid to ask how things are going – but be prepared for a real answer. We have no intention of being fake. Understand that there are good and bad days and if it seems as though we’re not paying attention if you’re talking to us, or if it seems like our minds are completely not focused in the moment, please extend grace – it’s likely that we’ve just been through a valley and are walking out of the forest. Most of all, know that we love our kids more than anything, and we bear a heavy load right now, to make it all work – the school, the different therapies, the friendships, church activities, work, household stuff. Our kids go through the same things your kids are going through, just with some differences in perspective.
We are amazingly blessed with supportive family, friends, children, siblings, and our church. We know this is not a road that we will walk alone, and we are grateful!