Patient Stories

Signe Snapshot Day - A Day In The Life Of M-CM

Tuesday 27 November 2012:

7:45am Light a fire while Signe is plugged in to her iPhone. Quickly cook breakfast.

8:00am Breakfast.  Feed Signe one piece at a time to avoid overstuffing! The usual; eggs on toast. Don't forget to feed myself.

8:30am Speech Therapy - Patty!  Signe loves Patty. "Can we play?" accompanied with the sign is always the first question. Patty works with Sig today to match colors; "she's starting to get it. Blue on blue, yellow on yellow etc; with matching shapes."
Patty stays later to talk about the CPSE meeting next week (Committee on Special Education).

9:15am Signe discovers the pile of books and starts flipping through each one to the end. She flips each one upside down and starts flipping some more. I wait for her to shake her head back and forth. This tells me she's done. I wake up Aidan and Willie too during this time.

9:30am Signe has made it over to the blocks. She takes them out to feel them and to put them in her mouth. By 9:35 she's on her stomach which means she might be pushin' the poop. This is where she most often goes to.

9:37am Sig is already sitting upright feeling the couch's texture, which mean she might be done. False alarm, no poop. Head shaking and laughing to herself tells me it's time to intervene. Etch-a-Sketch on the couch.  Ten minutes go by in which I try to wake Aidan and Willie up; 9:45 - late for blooming kids! This also entails fetching clean clothes from the dryer for Willie. I see it as a time suck.
By the time I return 10 minutes later, Signe is shaking her head. Time for intervention.
I think to myself, "Come back Signe! Signe, come back!"

10:00am Ah temporary relief. Signe rediscovers a pile of books on the couch. (Time enough for me to get the kids to eat which often is a P.I.A.)
 
10:10am Instant Message with my Wife, Christy, at my computer. While on the phone with Mom making plans, Signe spots me and begins pointing and wah wah-ing. The jig's up. She wants to watch Sesame Street on my computer. I try to resist this request as long as possible but by 10:20 she’s back to head shaking. "Signe come back! Come back,Signe!"
So we begin the long walk from the living room couch to the computer with her walker. She does ok...actually she's getting stronger! So much so, that I feel confident enough to leave her standing while I run to the bathroom. Quick Pee.

The walk takes a few minutes and by 10:25am she's in her stander. On loan from the PT. It's a huge crank operated stander with a big steel frame, with a giant tray on wheels. A moulding wrecker in which I imagine the doctor could've built 'Frankenstein' on.
A break!!  Hmmm...what to do with the time? Make sure kids are fed and maybe some home repair (?) is my first thought.

10:42am 17 minutes and 50 seconds into Sesame Street and she's happy as a clam, bouncing with excitement.  Do you know how much a person can do in 17 minutes?

•    Start laundry.
•    Confirm Orthopedic appointment for Willie.
•    Schedule phone call for Aidan's book club (which could've been faster).
•    Make a Spanish Omelette.
•    Push-ups and light weights with Willie boy as we wait for the pan to warm up.
•    Fetch the mail.
•    Load and start the dishwasher.
•    I'm sure there's more...like taking the time to write this down!
 
11:15am Half way through Elmo's World, my body tenses up a bit because I know it's getting close to the time when I need to take Sig off the computer.
The fire! I've neglected it and now it's almost completely out. Quick sprint to shed for more wood before it does 'cause that can be a big hassle to restart. I breathe.

11:20am 'Word of the Day on Sesame Street ends my time. Sig begins the long walk back to the living room. This time I just hold her hand as she walks. Sig's delighted to see Aidan, and his computer, on the couch. He also has a calculator which Signe grabs and seems interested. This lasts 5 minutes (a while) until she starts head shaking again. "Signe come back! Come back Signe!"

11:25am I give Sig her iPhone (Willie needs Math help).

11:35am Sig seems Ok. She's become very good at navigating through the apps. Opening and closing them. Showing definite preferences, likes and dislikes. She has navigated to the Elmo App. Surprised?

11:40am Still on iPhone which is a God send and lets me continue helping Willie with math.
Signe's on to a jumping app with 'Rosita' from Sesame Street. She can't jump so she shakes the iphone to trick the app that it is counting her jumps. She outsmarts the computer app. Fantastico!

12:00pm I snack for the first time and Signe sees me. Time for lunch. Sig orates loudly - and points and shakes her head to tell me she's hungry. Peanut Butter and Jelly today which I cut up into tiny squares while Sig impatiently screams. If I put the whole plate down she would overstuff so I dole them out. She pops one in her mouth and shakes her head from left to right, as usual. I notice it's to the left first, and then right. When she stops shaking I know it's time for more. I try to sign with her but she just shakes her head and screams. I tell myself," A step in the right direction. At least she's moving her hands." then I quickly give her another piece.

12:20pm I place her on the rug until Mary, her Special Education (S.E.) teacher comes. I just let her do her thing and just hang out.

12:30pm I get a second to feed Willie lunch and teach Aidan how to multiply mixed numbers by whole numbers.   Mary arrives and turns on music and tries to engage Sig that way. 'Wheels on the Bus'... all the hits. I think there are definitely cooler versions out there of these tunes. A little torturous.

12:45pm Mary tries to engage her with pictures and symbols. Sig's not into it and shakes her head, as she does when she's uncomfortable. The therapist goes back to music but with picture cards.

12:55pm Mary is cleaning up one activity and is now setting up to paint. I'm still feeding Willie and start to fold laundry.

1:00pm Signe sees Willie eat something and has a mini-tantrum. She wants food every time she sees it. I give her a few pretzels to calm her so she will try painting.

1:04pm She’s not into painting so that's over.

1:05pm Painting has become teaching Signe to eat one pretzel at a time.

1:09pm Sig, now on the floor, absconds from the Therapist trying to get her to stack blocks. Mary turns her back for a second and she's crawled away to find Aidan's pencil set. Glad I saw it and caught her in time before it becomes a game of pick up sticks for me.

1:14pm Sig and Mary are now at the window counting cars. Mary is working hard today.

1:35pm After lying on the ground for 5 minutes post therapy, Sig is put into the car so I can drive her brother to book club.

2:18pm We're back and I'm hoping, magically, she'll fall asleep before my 2:45 drum lesson arrives. She's rolling her head in bed back in forth, back and forth, back and forth. "Signe come back....."

2:40pm No Luck. Sig is still awake and my first student has arrived. Willie will have to help by staying with her while she plays with her iPhone.

3:15pm Still no luck. Signe is still awake. I'm feeling lucky that he's there to help. It's a lot to ask an 8 year old.

3:30pm The 3rd student arrives a bit early and still no luck...she's awake on the bed rifling through books, having gone through the iPhone. It's getting harder to feel good about teaching, which I love.

3:45pm Quick peek mid-lesson but it's all cool. Aidan is now home. A huge relief because he's there but also because he'd been dropped off and I won't have to get him.

4:00pm The next student arrives and Sig is still awake but getting sleepy. Aidan plays guitar for her which she really digs.

4:30pm Signe has fallen asleep. I am relieved to have a few minutes before my next lesson.

6:00pm Sig is woken up for dinner. Grandma has come to stay with the kids while my Wife takes me out to for a belated birthday dinner. Psyched.
Sig's excited to be eating pizza which is our escape route. Otherwise there'd be fuss because Mama's home and she'd have to snuggle up.

9:30pm Signe lights up when we return from dinner. Always the best smile, especially for Mom and Pop! While we were out she destination walked with Grandma: from chair to couch, couch to kitchen, and back. They also played doll house which is kind of new, important, imaginary play. Grandma too, like the iPhone, is a God send; engaging Signe, and the boys, the whole visit through.

9:35pm Signe sits with us at the table while we re-cap the evening. She's shaking her head while we talk until she's sung to, or engaged with a device.

9:45pm Time to bring Sig up to bed. To brush, to read, to bed. Back and forth, back and forth, back and forth to bed.

 

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About Heidi Heidi Frost lives in the United Kingdom. She is married with three children. The eldest, Jack, was pre-natally diagnosed with profound disabilities when Heidi was 28 weeks pregnant, although he was 8 years old before he was correctly diagnosed with M-CM. Jack is now 17.

Heidi is a full time Mum to Jack and his siblings, and spends her time caring for Jack, attending medical appointments and negotiating the minefield of obtaining necessary services for her son.

Heidi created a website about Jack in 2005 and found that telling Jack’s story was an incredibly positive and healing experience and she is looking forward to assisting other M-CM families to do the same. In her spare time she enjoys writing about her life with Jack on her website and spending time with her husband and children.