my daughter has Down syndrome. she's 4. she's the youngest of ten kids (oldest is 30). all i'm about to mention are the challenges. of course naomi is the light of my life, joy of my heart, the delight of my very soul. but that awesome love doesnt erase the real-life challenges we face.
i'm sharing some of our family facts and trying to avoid the almost inevitable chorus of "look on the bright side." you're the mother of a special needs kid-- you're GOOD at trying to look at the bright side! i'm just trying to meet you in the real stuff with some ideas of what's helped us.
so here's at it. first the sort of philosophical core-- staying in reality. it helps a LOT:
when she was a tiny baby, naomi had very significant feeding problems and the method we created defined every hour of my day for 16 months completely, then for another 6 months to a lesser, but very significant degree. once or twice during that time i sort of marveled, "is this what my life means now?"
the only safe and true answer was "YES." yes it's true that i will struggle to make time for my other kids. yes it's true that we seem to be living one very steep learning curve. yes it's true that a huge part of what i used to do is not happening now because i'm doing this intead.
she had significant heart defects (with eventually miraculous outcomes) she'd go to the cardiologist every 4 to 6 onths for looooong days of tests, tests, more tests. i had tried once or twice to bring another or two of my kids just so we werent gone away from home so long, but that was a bad idea. so for quite a few days of shuffling from one hospital clinic to another specialist, i asked myself the same questions: is this what my life means right now? me away from my other kids so much? me advocating for my baby to everyone i speak? my husband and i spending 7 hour days passing a bored baby back and forth? same answers. same process. YES. this is what's really required.
then she didnt walk till she was 38 months. same questions, same answers. same process. Accepting, YES. this is how it is.
now she's been walking for a year. and at age 4, she's exhibiting some difficult three year old behaviors. shopping with her has become a challenge. meals are tricky. language delays increase frustration. she's in diapers and will be for some time. same questions. same answers. same process. ACCEPTANCE of what's true.
accepting what's true is integral for us at every juncture.
it seems you have done that-- esp. when you assert there's no 'cure' only management. so, your first task is happening-- asking yourself hard questions, giving yourself honest answers.
next are the solution tools. these things havent solved everything, but they sure help. and they're all little things:
i elicit my kids' help in specific, repeated ways. one of my girls set up my breastpump almost every time i used it, 5- 7 times a day for almost 2 years. she was good at it and helped her feel helpful to the baby. these days they stack the diaper basket and other things.
*i read out loud a lot. * a lot of time early on was spent with baby in my lap. feeding took forever-- like round the clock, really. if i could, i'd read out loud while i did whatever i was doing. sometimes story books, sometimes the instructions for the new coffeemaker-- whatever. i engage the siblings in some conversation about what i'm reading.
**youtube. **no kidding. my little loved and still loves music. so i click on youtube and my other kids watch, too. we explore a lot of music that way and we learn some cool songs. (none of them 'kid' music. i HATE supposed music for kids.)
**treats and toys and fun people-- **when someone does have to come watch my kids because we're doing a cardiology appt or some other appointment, i try to have a special game or toy and a treat for the caregiver to share with the kids. i try to make sure the caregiver is a special/ fun person too. and when gone, i dont expect normal life to go on. more fun, more play, less chores etc. of course it means that, once home, there are toys and messes to attend to, but we eventually get it done.
dates with kids-- if not me, then dad would take the other kids to simple, low cost but fun things: museum, walks in woods, kite flying etc.
follow me and tell me-- kids would want to talk about something special-- a bird they saw outside, a superhero they love, and i'm busy with naomi's needs i say, "can you follow me and tell me?" usually they're willing. i try HARD to listen and engage.
sit next to me-- i see my husband doing this naturally and i adopted it intentionally. he often invites the kids to come sit next to him. it just helps us stay connected.
**small unplanned little special stuff-- **our next littlest, josie, loves flowers and vases and arranging. if i'm at the grocery store and the carnation boquets are on sale, i'll ask her opinion-- or call home to ask her if i should buy on bouquet. if it's over the phone, i describe the colors and she chooses. by the time i'm home, she already has the vases and scissors out to do her florist magic.
(as mentioned above) *i call home to talk to the kids. * i have to work outside of home now. i call and say, what's the best thing about your day so far? we say a little prayer and hang up."
permission to check out, taking turns checking out when my husband and i do all or many the things i listed above and we do them often, then we dont have too much trouble giving ourselves permission to check out-- renting a movie, popping some popcorn and closing the door. get a sitter? yes. can we afford it? no. so i guuess we'll be having pancakes twice this week instead of once.
that's all i can think of for now.