Activities of Daily Living with a child with FASD

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As any parent knows, parenting is not an easy job. As any parent of a child with special needs knows, it’s never easy.

As parents our days are filled with shouts down the hallway to “get dressed, your bus is coming”, deciding what to make for breakfast and lunch, getting each kid out the door on time, trying to get yourself a shower, cleaning up the house, doing the laundry, planning for dinner, organizing the calendar, getting the kids off the bus, getting the homework completed, sports, etc…etc…etc…

These can be exhausting in and of itself. Now let’s look at that day through the eyes of a parent of children with special needs.

Our days are filled with shouts down the hallway to “get dressed, your bus is coming” then realizing that if you don’t make eye contact with your child, they hear NOTHING. Deciding what to make for breakfast and lunch can be a bit easier because many of these kids crave routine and that oftentimes includes eating the same thing over and over again. Getting the kids out the door on time can be a challenge because, if you’re like my family, we have kids in different schools. This means busses coming at different times. You miss one, and it throws everything off.

Now for the shower. Oh, the shower…a place where we can be alone and just let warm water flow over us. You reach for your new aromatherapy shampoo that you splurged on to treat yourself only to find it….EMPTY? I haven’t even used it yet! How can it be gone? You then remember that your child took a shower last night and in the few minutes you left your child unattended so you could answer the phone, they felt the need to clean the shower walls and bathtub…with your expensive shampoo. It’s also a great surprise when they use your lavender-scented vaginal wash as shampoo because they had dumped their dollar store shampoo down the drain to see the bubbles come up. There’s something to be said for having a house with a private master bath. I think I’ll put that on my list of things I can hope for one day.

You get out of the shower and dry your squeaky clean hair on the towel (and I’m serious about the squeak because I had to use a bar of soap to clean my hair since there was no shampoo). You arm yourself with cleaning supplies, vacuum, garbage bag and a dust rag and set off to clean the house. Unfortunately it’s not just dust bunnies you find under the couch. Oh, look, there’s my ring that I’ve been looking for that disappeared from my jewelry box. Great! It’s right next to a yogurt container that still has the spoon in it and is spilling over with ants crawling all around. I must have forgotten at some point to put the lock back on the refrigerator door before going to bed. Note to self: stop doing that! You finish cleaning and start to inventory your booty: candy wrappers, spit out peanut butter and jelly sandwich, string cheese, gogurt, a once frozen pizza thrown behind the couch in the basement once she realized they don’t taste all that great uncooked, 4 juice boxes and something you still can’t figure out what it used to be. All this in a couple of weeks since you last pulled out all the furniture. Wow, she’s good at sneaking things behind my back.

Laundry. Ugh, laundry. A thankless task for any mother. It’s the never ending household chore that I dread the most. I just love it when I find clothes in the hamper still on the hangers because she couldn’t decide what to wear and it just made more sense (to her) to toss it in the hamper than hang it back up. And then there’s the stench of stale urine and other unmentionables because hygiene is something that is just not that important to some kids with special needs.  A cup of vinegar added to the wash helps with this. In this house, I buy 5 gallons at a time. Seriously.

Organizing the calendar is a daunting task for any household with kids. Who needs to be where and when? What nights do you need to start thinking about dinner while scarfing down your breakfast? Which school projects are due this week and what else can we skip in order to get that done? Who has football practice? Who has a playdate? Yadda. Yadda. Yadda. In my house, we have all that but we also have counseling appointments, social skills groups, chiropractic visits and doctor visits. If I’m feeling overwhelmed by the looks of our filled calendar, I can’t imagine how the kids feel!

The alarm on my phone signals the “10 minute warning” that the busses are coming, the busses are coming! Which kid is coming home today? Is it happy Alli? Frustrated Alli? Tired Alli? Sad Alli? The suspense is killing me! Seriously, it’s killing me because I must have any number of “mommy faces” ready to handle whichever one comes off the bus. (By the way, I also feel this way in the morning before she wakes up. We can see several of Allison’s “faces” in any given day.)

Homework time. YAY! NOT! The calendar says we only have 1 hour to devote to homework tonight and there are two kids who need help. There’s a family in Minnesota or Montana (I know it’s somewhere in the Northern Midwest) that has 13 kids with FASD! Holy crap! I can’t imagine homework time in that house. I have trouble handling one (plus another child who is struggling with school)! Hats off and kudos to you Hays Family. I couldn’t do it. There’s just not enough time in the afternoon before bed to get it all done.

So, I’m not saying that families with neurotypical children do not have their challenges. I’m also not complaining (I chose to adopt these amazing kids and I vow to raise them with every ounce of strength I have in me). However, if you know a family that has children with special needs, give them an extra pat on the back to encourage them. Most parents of these kids won’t ask for help. They’ll just “do it all.” If you are a parent of a special needs kid, give yourself a break. Accept the help being offered and get an hour to yourself. Find a babysitter you can trust and go to dinner with your spouse. You NEED it!

Hmmmm, which one would I like to be today? The kettle or the pot? I should take some of my own advice sometimes! Teehee. Whoops!

Hang in there everyone! Cherish these days. They’ll be gone before we know it!

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