I’ve written a lot about Megan, the funny things she says and does, the sweet things she says and does, the fun things we’ve done together. You all know she has Down syndrome and how it has affected her: her limitations in understanding, in doing things, the impact on her speech/language and how because of that, many things she says or how she says them are really cute and endearing.
She is and always has been a joy and blessing to me, and I enjoy her company, especially as we go about our day cleaning or cooking, shopping, or just hanging out together. She really is a lot of fun and she makes us laugh a LOT because she has such a fun attitude and a great sense of humor.
What many people don’t know is that besides Down syndrome, Megan also has Bipolar, PMDD, and OCD. If you’ve never had any of these disorders, or had children with them, you may not understand what life is like for families who do deal with these challenges. In our family, not only do I have some of them, but some of my children do, as well as every single one of us having other special challenges.
It’s not like it’s the end of the world to have these disorders, or to have other special needs, but it does have an impact on each individual and on the family as a whole. There are times when a family member’s disorders or special needs can make life difficult or at the very least, challenging, but as time and life go on, you learn how to cope and handle it. You learn what works and what doesn’t.
Just to give others an understanding of what life is like just about everyday for our family, with all the issues we deal with, I thought I’d let you in on what happened the other night. This is a typical situation in our family that occurred because Megan appeared to be on the “high end” of her Bipolar disorder.
Please understand that I share this with you not to put my children in a bad light or anything, but simply to give you a glimpse into the life of our family with special needs and mental illness disorders. As much as I share things that happen that are so funny or sweet…we also deal with things that are difficult on a daily basis. But there is a lot to learn from, and a lot to help in the growth of, each of us as individuals and our family as a whole.
The characters: Megan, 26, has Down syndrome, Bipolar, PMDD, OCD, and other health issues. Ryan, 14, has Intellectual Disorder (mildly mentally retarded), ODD, ADHD, OCD, Tourette’s syndrome, speech and language delays, and memory issues. Timothy is 11 (yesterday!) and has ADHD with very tall, bold, Norman Rockwell font letters. Then there’s me, miseuf34tngs% years old, with Tourette’s syndrome, OCD, anxiety disorder, clinical depression, and some health issues.
Setting: We get home from shopping and it’s a little late, everyone is hungry, we’re all tired, etc. We’re trying to put the groceries away, talk about what to make for supper, and take care of several smallish tasks in the kitchen. I give Megan the pan with macaroni and cheese from lunch and a small container, telling her to transfer the macaroni and cheese and put it in the fridge so I can wash the pot. I’m washing the sink full of dishes plus pots and pans from lunch and 2 from a couple days ago that had needed soaking and I hadn’t done them yet. Ryan and Timmy are now in the living room.
They turn on the TV and we can hear it in the kitchen, and I don’t know why Megan was agitated, but nevertheless, she was. The boys are kind of arguing and annoying each other, and talking back and forth with me about supper: Ryan says he wants a PB&J sandwich, and Timmy, who is sick with a cold and has a splitting headache, says he doesn’t want anything, just wants something for his head and to go to bed. Lots of activity, chatter, and noise.
Me: Okay, I’ll get you something for your head, Timmy. Megan, don’t forget to put the cover on that container when you get the leftover macaroni in it, okay?
Megan: Don’t watch that show. You can’t watch my favorite show.
I recognize that agitated tone, and calmly say: It’s okay, they can watch the show.
Megan: No they can’t. It’s my show. They can’t watch it.
I can hear that the level of agitation has elevated, and am thinking, oh boy…
Timmy: I can watch whatever I want! You can’t tell me I can’t watch this show!
Me, trying to keep this from escalating: Timmy, hush. Megan, they can watch that show on their TV.
Timmy: But she’s saying we can’t watch it! She can’t tell us we can’t watch a show!
Megan, voice rising in volume: Yes I can. It’s MY show! You can’t watch it!
Me, hands wet b/c I’m still scrubbing pots and pans, hoping to head this off at the pass: Timmy, stop! I will handle this. Megan, they can w--
Timmy, interrupting me: Well she won’t stop saying we can’t watch it! It’s OUR TV! She can’t tell us we can’t watch it!
Me, exhausted, and weary of going through this for the 7,805th time, just wishing each of them would stop aggravating the other: IGNORE HER. I. Will. Handle this. Keep your mouth shut and do not respond to her.
Megan: I don’t WANT them watching my show. It’s MY show! They can’t watch it!
Me: Megan…<trying desperately to be calm and hang onto what little sanity I have left tonight>…that doesn’t matter. You can’t tell them they can’t watch a show on their own TV. They can watch it and it will NOT do anything to hurt YOU. You can watch it in your room on YOUR tv. And if you don’t stop acting so crazy like this, YOU won’t be allowed to watch the show.
Megan, quiet as she finishes what I asked her to do: Yes Mummy.
Crisis averted…for tonight.
I sigh as I finish the last of the dishes and wipe the sweat from my forehead. I take the dirty macaroni and cheese pan and serving spoon from Megan and begin to wash it. Megan announces that she will have some leftover spaghetti for supper, and I proceed to get it for her.
As I’m at the counter adding a little extra sauce and cutting the spaghetti for her, she giggles and happily says she likes her spaghetti cut.
Me: Do you want some bread and butter to go with it?
Megan, totally calm and carefree: Yep! I love bread and butter! Can I have two?
Me: Yes you sure can.
I remove two pieces of bread from the Autumn Grain loaf we bought at the local thrift Bread Store tonight, and reach for the butter.
The house is suddenly calm. Timmy is in the living room watching TV, Megan is getting water for her pills that she retrieved from my bedroom earlier; the medications she takes daily. Two of them are for the Bipolar Disorder, OCD, and PMDD she has inherited from my family. Ryan makes a PB&J sandwich and eats it. Megan is happy with her leftover spaghetti and bread and butter.
“Goodnight! I love you Mummy!” That is Megan as she heads to her room.
The storm has passed, and the home is calm. <sigh>