I thought perhaps today could be a walk through of my day, not that my day is amazing and action packed. However it seems to me that viewing another’s boring, regular day might be a nice antidote to the constant feed of amazing Highlight reels that show up daily on Facebook. The life of any parent is not glamorous, but add the interesting challenges of special needs, and it can get even less so! So sit back and enjoy watching another parent’s life.
I cosleep with my 7 year old, have done so ever since she was born as she would not take to any of the sleeping arrangements we set up for her. The cosleeping swing and bassinet were only ever used briefly as the rest of the night, E needed to sleep ON me in order to get any sleep. So I share my nights with a somewhat clingy but adorable, tossing and turning little girl. We get up together in the morning and wake up dad, and the three of us get cracking while we let M sleep in a little bit.
I make three breakfasts. Why, you ask? Because my dear husband doesn’t eat breakfast, M eats puree and E won’t eat the eggs that I make for myself as I need the protein for breakfasts (see, we’re still a work in progress right now too….trying to figure out how to make meals we can and will all eat. Believe it or not, E’s pickiness is reducing.) I make something for E that’s fast on school days, grind up the meat and veggies plus broth for M, and then I set up their lunches if I haven’t done so the night before. Lunch is puree again for M plus meat, veggies, avocado, or chunked squash for her snack. She is on beginning stages of GAPS intro diet. School is working on feeding her solid food, so they love it when I load her up. For E, I’ll put some of the previous night’s dinner, some apple and sunflower seed butter, or some nitrate free turkey in her lunchbox along with a raw veggie and maybe dried fruit.
I get both of the girls fed, then make sure E gets dressed and ready to go. Meanwhile, hubby gets M up and changed out of her pullups, and then I give her the morning digestive enzymes and thyroid medication. I take E to school and then come back and assist hubby with getting M dressed and out the door. He takes her to school, and then I get my actual breakfast. I might catch up on email and Facebook, and then when I am a good girl, I start work on a blog post. After that, I might go to the gym. On other days, I have a lot more, like taking M to speech therapy, then dropping her off to school, possibly meet a friend for coffee, and then go to various appointments. Now that both girls are in school, I actually have several hours to get things done. For ten years, I was non stop caregiving with maybe two hours in the day to take care of things last year. This year, I feel almost lazy. It is a welcome change, though. But now the challenge is to not waste the time I have. But I digress……….
When the girls come home, I go through their bags, check for homework and then get afterschool snacks. The kids only have twenty minutes to eat their lunches, and E is a slow eater, so by the time she gets home, she could almost gnaw off her own arm! It ends up that she eats so much that sometimes if I don’t catch her, she won’t be hungry for dinner. Sigh! It’s a challenge. Anyway, when they get home, that is when M is in full swing. It is constant attention from filling her bottle (we are finally transitioning to straw cup. Yay!) with water over and over again, to pushing the buttons on the cd player to get the songs she wants (she loves Barney….that and Koo Koo Kangaroo….over and over and over and over and over….) Oh yes, and the occasional grab of the crotch and an impish laugh which means she pooped in her underwear. She finds that to be hilarious! She also has me throw stuffed animals almost constantly. If I don’t do that, she starts bugging me to eat, because this girl LOVES food!
Once the push is on for sustenance, I head to the kitchen and start making sure I have enough for dinner. I make about two pounds of veggies and a pound of meat a day for just M! Some people with Down Syndrome and also I have heard, Autism, don’t seem to have that feeling of satiety. I can only suspect that is what goes on with her. she will eat until I pull the food away. I try to be cognizant of possible growth spurts and the like, so I allow a little more than maybe others would. But she eats like a teenage boy or two. No wonder our grocery bill is high! Now if I can use some of what I make for her to make food for me and E (because again, hubby doesn’t eat dinner at home), I will. Otherwise, that is another dish I make at the same time. So sometimes I have about 4 pots going at the same time. Plus I have a cat who demands dinner at the same time. It seems everyone is at me to feed them:) While I cook, sometimes M will come into the kitchen and try to toss the stuffed animals around. It can be interesting, but it is kind of fun sometimes. She is adorable!
After dinner, I wash and clean up the food. If I didn’t have veggies or meat ready for the next day, I will cook some up (told you, I am in the kitchen a LOT!) If I have time, I will make lunch for the next day. Hubby comes home, and sometimes I will hide in the kitchen with my kindle for a bit of reading or watching business videos. He’ll play with the girls, and then I’ll get some playing in as well if I can. I try to play when M and E first come home, but it just depends upon the day. Anyway, then I make sure E’s homework has been done, and if M wants more water, we switch to the straw cup. M loves to show off her cup drinking! We start winding down for the night, brush and floss teeth (as well as mine) and get all of the toys put away. Hubby gets M changed into overnights and her pajamas, and I make sure we all have done what we need to before bed. Hubby gets M to bed and I get E a book and off to bed as well. It is then lights out for me and E as I am exhausted by the end of the day. Then we are up at around 7 the next day. Wash, rinse, repeat.
I am hoping that I can get M into some ABA therapy in order to help her with lots of skills that not only I and the school are working on, but also some new skills. I had other therapies I tried to implement, like MNRI, but it was hard to implement along with GAPS. Maybe one day i will be able to integrate that back into our lives again as I think it will be very important in the long run. But right now, I just can’t do it. Too much going on at this point. And that’s the unfortunate thing about reality. We can’t do it all.