Given our really rough patch with Sheena Tara, I have been trying to keep life simple, and to let Sheena have proper oportunities for quality sleep during the day. However... this is not so simple! Yesterday I had to go across town to Windsor, (a 45 minute drive) to buy an expensive high chair that I'd bought on ebay. I decided to go for a flash one, because it has lots of positions that should be good for Sheena. They are $400 in the shops, but I got it for $190 on ebay - cool. While I was over there, I also went to Noah's Arc, a specialist toy library. I got Sheena some really groovy stuff. But... there goes Sheena's routine. I had to wake her up as soon as we got there, because she'd gone to sleep in the car. Not a very happy camper as the occupational therapist help me select toys for Sheena. I know that Sheena is only 7 months, but she is breaking down the stereotype that 'they are such happy kids'. I really hope this is a bad episode of teething.
We went to a talk at the DS Association about education options last night. The speaker was an academic, and very pro-inclusion. http://www.include.com.au/ He said some very powerful things. Such as, is there any one thing that DS people share in common with all other DS people? The answer is no. The Syndrome is highly variable. For example, Sheena has brushfield spots in her eyes (which are stunning), but she doesn't have a single crease in her palm. Sheena has a heart condition, but she rolled over when she was 16 days old (yes that wasn't a typo).
5 comments:
First and foremost your daughter is a wee girl who has her own set of abilities and needs, just like any other wee girl. Yes she has DS, but that is a secondary issue, not the defining one.
My daughter has the single crease in her palm, and had a hole in her heart that meant she had to have open heart surgery at 5 months old (which worked a treat), but she has never had any problems with her bowels, which is something other children with DS we know have had.
I always hated it when people would say "oh I hear they're very loving children" because it pigeon-holes my daughter - it puts the condition first, and my daughter 2nd. As it turns out, she is very loving, but she can also be a right pain in the arse sometimes too - just as any kid can be.
In the end Meg is just Meg and we deal with her particular needs as and when we need to, just as we do with our son, who doesn't have DS.
At 7 months old, other than any medical issues she might have, your daughter needs what any other 7 month old needs - love, attention and a clean diaper :)
When we finally got into a routine I used to hate going anywhere if it was nap time...nope...can't leave the house because Kayla needs her nap :) Couldn't upset that routine you know :)
Joey is 5 months old and has absolutely no routine, so I know how you feel. I just wish Joey would take naps on a regular basis, but we're lucky to get one or two 45 min- 1 hour naps a day!
Jessica: Sheena was like that when she was 5 months. However after a few trips
to hospital, I started to really focus on her sleep patterns, and she
has dropped from 7 feeds to 4 feeds a day. I think she was really
exhausted. To make her sleep longer than 45 minutes during the day, I wrap
her. 45 minutes is a sleep cycle time, and babies frequent wake up
after that, but it can be a good idea to resettle them rather than get
them up. Just passing on something that worked for me, but they are all
different, so I hope he gets into some sort of pattern soon for you.
I love that photo. She looks like a little old man!!!
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