Occupational voyeurism and LOVE

I like reading about the lives of others. I would gladly read the autobiographies of truck drivers, pilots, waitresses, you name it. It all fascinates me. I used to think it would be SO MUCH FUN to just randomly get to spend a week with strangers, and see how they lived. Little things, like what kind of foods the family eats or how they spend their evenings, is really intriguing.

Lately, seeing as how I am in occupational therapy school and focusing on health care, I enjoy reading the blogs of mothers who have children with special needs. One mother, “Dream Mom“, talks about life with her son, who has severe mental retardation, intractable seizures, no toilet training ability, no language, and no use of his limbs. She talks about the challenges she often encounters, from Hoyer Lift maneuvering to figuring out how to change a 150 pound boy’s diaper in a public restroom. She makes me think about things I’ve never thought about, because I’ve never HAD to. She and I have exchanged e-mails several times over the last year, and I recently e-mailed to tell her how helpful one of her posts had been, that talked about ideas for toys for children who have little mobility. I confided to her that I was scared. Reading blogs like hers was somewhat overwhelming, because it was clear she has so much knowledge of how to handle his disability. As a future occupational therapist, I can’t even imagine how I’m going to learn enough to be able to actually be able to help her. If I see a child with severe special needs an hour a week, and she lives with her child the other 23 hours of the day, it seems unlikely I’ll know something she doesn’t. Luckily, she wrote back and explained that that wasn’t the case, and she also gave me some good tips. I’m going to paraphrase her response:

1. When you have to transfer someone from the car to a wheelchair, every second can count depending on the weather. So make the equipment for the transfer/wheelchair as easy as possible!

2. Mothers are exhausted. The therapist can bring options to the table, and sometimes the therapy given by the OT/PT/ST is all the therapy the child is going to get, because there just isn’t time/energy for more. The easier the treatment is to incorporate, the more likely the mother is to actually use it.

3. Know what the family can afford! Don’t present options for expensive items or permanent changes to the household, if the family can’t afford it or if they live in an apartment and can’t modify things. In other words, do your occupational profile!

4. Options, options, options – show available equipment/services to the family, and explain why things are important. This is especially true for parents whose child has only recently been diagnosed.

5. Be creative. Mittens not big enough and gloves not acceptable? Use socks.

6. Listen to the parents.

7. Figure out ways to make their life easier. Giving ideas for toys for Christmas/birthdays is always a plus.

8. Find a way to compliment the child’s ability. Even if the child can’t move or talk, there is a good chance there is SOMETHING about that child that can be complimented. Maybe the child is beautiful, or clearly has a good sense of humor, or who knows. Find that “strength”. Parents know their children have special needs – it’s nice to hear something positive every once in a while .

I really appreciate Dream Mom’s insight. And my favorite part? She loves her son with all her heart, and it shows. Even if she only gets an hour of sleep at a time or strains her back constantly, she adores him. He is her heart.

I saw this same love and adoration from another blogger I recently discovered (“Ryn Tales”). This mom has a daughter with cerebral palsy. She openly discusses some of the trials and tribulations that her child’s diagnosis causes, but just like Dream Mom, her writing radiates love. Her most recent post talked about how people sometimes view her and her daughter with pity, and don’t understand the depths of joy her daughter brings her, disability or not. I’m going to copy a quote from her post because it really struck me.
I see this beautiful little girl, with skin that is the color of my bolero blush roses, green-eyed and blondie curls who seems to soak up the sun and emanate it from within no matter what the lighting. I see her cheeky grin and find myself striving to make her laugh just to see her smile and hear her giggle which is the cutest thing I have ever heard. I see a person who opens my heart the instant I even think about her.”

So, it took me about fifteen pages to share my thoughts on this matter, and I’m not sure I ever really had a specific point. Okay, well, I kinda had two. One is that you always have SOMETHING to offer the parents of a child with special needs, no matter how severe or intimidating. Two is that these children are deeply loved. And that’s the most important thing.

Oct 04, 2007 | Category: Occupational Therapy | Comments: 3

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