September…all around me, it seems this friend or that friend has helped their child or children get settled in at college, many of those the last child, the youngest. Many of my friends are now facing a new phase in their lives, the “empty nest.” Some parents look forward to it, some dread it.
And some of us may never experience it.
As the mother of at least one child with special needs (I actually have four in that category, though the special needs differ vastly from child to child), I’ve had many years to think about these things, and to research the possible life scenarios for adult children with disabilities, especially my oldest. There are many options available to parents out there, such as assisted living homes, independent living arrangements with minimal in-home support, fully staffed group homes, etc.
And, of course, there is always the option of your specially challenged adult child living with family members. One source online suggests that approximately three fourths of adult children with intellectual disabilities live with family, whether it‘s the parents, sibling, or other relative. This is the option I have always known was best for my oldest daughter and for us.
Part of the reason we have made this decision has to do with my beliefs. I believe in family taking care of family, whenever possible. I don’t even think my children who are able to live on their own without any outside supports need to leave, unless they’d like to. If both parties are agreeable to their living at home, why not? It’s expensive out there!
And as for my daughter, why should she go live with strangers taking care of her, when she has a family right here who knows her and loves her more than anyone else ever will? We know her best, we have her best interests at heart, and we enjoy being in her company. A paid staff care worker may enjoy his job, but he is still a paid worker, doing his job. I don’t get paid to care for my daughter; I just love her to the moon and back.
Megan is 26 years old now, and she has Down syndrome, as well as Bipolar, OCD, and PMDD. She has her own strengths and weaknesses, and her skills are scattered at different levels; while she is uninhibited about scratching herself in public, her speech and language is above average for a person with Down syndrome. She knows her letters and a few words by sight, but she can’t count out money.
Megan has trouble pronouncing certain sounds; she says “funder” for thunder, “wiot” for riot, and “broff” for broth, yet she can tell you what day of the week it is, and even her 14 year old brother Ryan asks her what day it is because he can’t remember the days of the week, but she can. She can tell you what day comes next, and the day after that, and the day after that.
Just to give you a little more of the flavor of Megan, she loves her American Girl doll Molly, who she named Emily. Emily has somehow lost a certain length of her hair, and what she does have is, shall we say, “perpetually frizzy and disheveled.” <trying to choke back laughter here> One eye opens and closes freely, but the other is usually either at half-mast or closed completely. Emily goes with Megan everywhere, and usually has a cast on one leg, and is dressed rather uniquely, changing outfits one or two times even when we are just going shopping.
Is Megan ever embarrassed to be seen in public with her doll with her? No. Am I ever embarrassed to be seen with a grown woman toting a doll with her? Never. We can hardly ever go anywhere without 2 or 3 people, even more some days, smiling and saying something to Megan about her “baby.” The joy Megan has unknowingly given complete strangers just by carrying her doll with her, and happily talking with them about Emily, is just something special. It always makes me smile. And everyone else.
Megan absolutely loves to color and draw things for people. Her pictures make me smile so much because they are just so cute and unique. She loves doing crafts and anything artistic, and usually does them with an eye towards giving them away to people. Some of the pictures she’s drawn that I love are of well known characters, like the one she drew of Ronald McDonald, or of some of the characters in the PBS children’s show Arthur, based on the books by Marc Brown.
Megan loves to swim and never even needed lessons; she just swam, even under water. My mother has an in-ground pool, and even in the winter when it was closed up and under a foot of snow, Megan would ask to go swimming. She loves going for walks, playing on playground equipment at the park, and going out to eat.
I have always valued a good sense of humor, and Megan has a wonderfully developed one. She is surprisingly adept at finding the humor in things and making puns, and any time spent with her usually includes an awful lot of laughing. Just spend a half hour playing cards with her. 
Though she can’t write more than a few words without help, she can hear an entire room full of people speak about their prayer requests and then remember them all later in prayer. She’s an amazing prayer warrior with a faith so deep, pure, and true, that she puts seasoned Christian believers to shame at times with her trust in the Lord.
And though Megan has Down syndrome, and has limited understanding, low muscle tone, poor fine and gross motor skills, a speech impediment, and will never be able to live on her own, she can bathe herself and does every day. She can brush her own teeth, and pour a glass of milk or iced tea.
She can get her morning pills and night pills from her 7-day pill boxes, and knows which day and time (morning or night) she’s supposed to be taking at the time.
She also fills those herself, correctly (I do check afterwards).
She can fill a 2 quart container and add mix to make iced tea, and…
She can make herself a very simple meal, like a sandwich and chips, or a bagel with cream cheese, or leftovers warmed in the microwave.
She can fold laundry, and not just the “square” items like towels and washcloths.
She can change her bed and make it up again,
and clear off the kitchen table,
and change a baby’s diaper,
and prepare baby food for a meal (meat and 2 veggies/fruits) and feed an infant,
and feed and water the cats,
and peel and cut carrots for supper,
and dice meat for a casserole,
and sweep the floors,
and play a wicked game of Go Fish, Uno, or War.
Megan isn’t able to live on her own, and she never will be. But my Megan is not just someone I have an obligation to take care of; she is so much more than that. My Megan is someone who is helpful, thoughtful, caring, kind, loving, giving, and just plain fun to be with. When I am hurting and crying, she is the one who instinctively comes and hugs me, handing me a tissue and softly murmuring words of comfort. When I am making a joke, she is the one who laughs jovially and adds more humor of her own.
I love being with her, I appreciate her help, and I need her in my life. I can go on about how much she needs me in her life, but believe me, it goes both ways. I can’t even imagine my life without Megan in it, each and every day. While living in a supervised home may be what’s necessary or right for some individuals and families, for whatever reasons, it’s just not right for her or us.
This is what’s right and best for Megan and our family, her being right here in our home, being a vital part of our family and home. She is that and so much more. She is our Megan.