- Monday, September 10, 2007
At twelve months my little fellow with Down syndrome put a donut in the VCR. This was a foreshadowing of things to come. Whatever curiosity gene possessed my boy to experiment at age 1 has followed him to age 13.
Today's lazy morning had me feeling good with a song in my heart. Then I went upstairs. Daddy's shirt was arranged neatly on the ironing board, the hot iron face down on top of it. My "helpful" son had contemplated ironing, then walked away. Now, the song in my heart should have stayed. After all, the fire I instantly imagined did not happen. God allowed me this discovery, and I'm grateful.
Parenting a special needs child can be, among other things, wearying. Exhausting. Overwhelming. The fatigue factor packs a hard punch because the effort is so constant. Some of our children do not outgrow behaviors or mature like typical children. Many of our children lack good reasoning skills and impulse control. Until you encounter a fairly trustworthy child who can in a heartbeat make a very careless decision, you may not quite understand the level of responsibility felt by the parents of some children. Parents of toddlers experience this for a season, but some of us might for a lifetime. Time and experience do not teach us to mellow. While we put our children in God's loving hands, we'd also better pay attention.
You have three door locks to keep someone in,
Your clock is set nightly so you can wake and monitor your child,
You hold your adult child's hand in public because he wanders,
Your 17-year-old still occasionally colors the walls with a marker,
Your son needs help blowing his nose or using the pottie at 19,
An entire stick of butter might be spread on one piece of bread,
Obsessive behaviors control your child,
Self-injurious behaviors or violent outbursts are a constant threat,
You cannot run to the store without packing the meds,
You are brushing someone else's teeth for 16 years,
You send your 27-year-old to her room,
Your child sobs but cannot communicate or generalize pain,
Your son can't go to Sunday school because there is no helper for him,
Your daughter could be very easily physically taken advantage of,
… then you, friend, may be able to relate to the fatigue encountered by some parents of special needs children.
Some parents whose children are very young may not have yet dealt with ongoing issues. Parents whose children are high functioning, or who have a good support system, may not experience the depth of the disability that others do. Some parents may struggle daily.
Many days, "inconveniences" are met with strength, grace, and even humor. We love and cherish our children for who they are. All children, all people have weaknesses and are demanding. Our children may have a different set of demands sometimes. We deal with it. We love them. We find joy. Most days.
Other days we are weary.
Fatigue may come from the need to advocate medically and educationally. Staying on top of the health issues with therapies, stethoscopes, needles, G-tubes, oxygen, and appointments gets tiresome. As our children progress through home education, we may, like many mothers, struggle with doubt. Doubt is draining. We encounter seasons when our children do not seem to make much progress or when they have setbacks. One year they amaze us; the next they struggle with some basics. Day after day after day, we keep plugging away. We listen to ourselves and realize we are not encouraging and cheery. Instead we hear ourselves saying things like, "Try harder! Why can't you get this?" Then the guilt of our impatience drains us. Lord, we are sorry.
Discouragement tires us. Your 10-yearold son wets himself at a sporting event. You have a very messy eater, and the other children scoot over and stare. Maybe your child refuses to speak because he knows he is not easily understood. Maybe your child is extremely anxious. Maybe her friends outgrow her. Maybe she is too outgoing, huggy, and touchy. Maybe your relatives think you don't try hard enough. Maybe other children giggle behind her back or tease him to his face. Maybe someone cruelly told you, "You didn't have to have him." Maybe your typical children feel forgotten at times because of the demands of your special needs child. Maybe your children are never invited anywhere like other children are. And worse, maybe they ask you why.
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