1. Where have I been this week? READING THIS BOOK!
In fact, I’m slightly annoyed I had to stop in order to write my Quick Takes, eat, go to the bathroom and otherwise interact with my family. But it’s just SO FASCINATING. At least for me, someone who loves history (I never knew the importance of Crete in WWII), mystery, (secret agents kidnapped a German general) and physiology (ancient Greeks were tough, and that ancient physical culture is still influential today). If you love all those things, especially history, I can’t recommend it enough. I’m forcing Tony to read it when I’m done and I think my older kids, especially Byron, will love it too, but there are enough adult situations that it may have to wait a few years. I’ve been so engrossed that I’ve had multiple dreams about become a secret agent. That is ….when I’m sleeping, because
In case you’re wondering, this is the time of year that baby bats finally decide to test their wings and leave their home for the first time. This has meant seven baby bats, JUST IN THE LAST WEEK, have made their way inside our bedrooms, instead of the great outdoors. We finally got a pest guy out and he told us that bats in NJ don’t migrate because it’s not cold enough. That means this winter, when we stuffed all the cracks and crevices on the outside of the house with more foam and insulation -we just made it a lot harder for all these new bats to escape, CAUSE THEY’VE BEEN LIVING SOMEWHERE IN OUR HOUSE ALL WINTER. So anyway, yesterday we had to pull out everything we just stuck in, in the hopes the bats will make it outside easier. The pest guy can’t do anything to help us until August because, under state law, baby bats need the chance to learn to fly and survive before they can be kicked out of their home. Let that sink in: I AM BEING FORCED TO LIVE WITH BATS!!!! So when I’m not dreaming about being a secret agent, I’m dreaming about bats (as I sleep downstairs).
3. The girls will be glad their week at camp coincided with Bat-Apocalypse 2016. Tony has been teaching Byron the art of bat trapping and the little boys are usually both asleep by the time the bats emerge. Every afternoon, we’ve done some special activity and I typically succeed in wearing them out slightly more than usual. Our adventures have only been slightly hampered by Teddy’s broken wheelchair. With a little Playdough and some of Edie’s sparkly duct tape, we’ve been good to go…and will hopefully continue to go, since the repairman couldn’t do anything except order parts which will arrive in 30,923,095,723,098 years, give or take a month.
4. We’ve done three outings (library, zoo, museum) and two days of crafts. Honestly, the crafty days are almost more exhausting for me than the outings. By Thursday’s second craft I was probably yelling a bit too much. Tonight we might run a power cord out to a tent and let the younger boys sleep outside. Usually, I convince Tony to do these things with the boys because “quality time” blah, blah, blah, but since the inside is infested with bats, maybe I will be the one joyfully joining the boys for a camp out…whether they like it or not.
5. My 12-year-old asked me to download Pokemon Go! I consider our family walks around the yard to be just as special as the crafts and outings. The hardest part was trying to pick a name that wasn’t already taken. After going through our usual list of favorite nerdy characters, we were forced to resort to using the first letter of all our names. Watch out Pokemon animals (or whatever the hell you are) Akabeft is on the way!
6. Wednesday’s visit to the zoo was, fun…if you asked the boys. Fulton liked the peacock that walked up to greet us on arrival. Teddy loved the grey fox and both boys expressed their disapproval at the cheetahs who refused to run really fast. Me, I was a bit aggravated, and against better judgement, took to Facebook to air my grievances.
I was really surprised by the response. From my post, many people assumed the boys had had an unpleasant visit when that wasn’t the case at all. *I*was the one who noticed all the stares, directed gaping children out of our way and tried to smile and be friendly with adults who looked at my children like they were circus freaks. Fulton and Teddy, God bless them, either didn’t notice, didn’t care or quickly forgot the crowds of people who didn’t even try to hide the fact they found the boys more interesting than the snow leopards.
I was angry. Not them. I needed to vent. Not them. Learning to not get frustrated with curious, or rude, people is my problem right now, not theirs. In time, they will develop their own way to deal with people who stare, or ask me right next to them, as if they can’t hear or speak for themselves, “What’s wrong with them?”
As a special needs parent, I need to be very careful I do not allow my perceptions and experiences of a situation to ruin the actual situation for my children. Their struggles are their own and do not need to be compounded by my own feelings. Right now, believe it or not, they are not distraught about having SMA. Driving power chairs, and being different from other kids is just how things are, it’s not something horrible to complain or worry about. When they ask me if they will walk, and I say no, they say oh, and ask me something else or start talking about Transformers. They are happy, even knowing they can’t walk. Not walking is a tragedy in the world’s eyes, not theirs. So, anyway, I don’t want people to worry that the boys are all upset about how people treat them. *I* am the one that’s upset, and I will get over it.
Next month is SMA Awareness month and I didn’t think I had much to say after everything I wrote last year, but I’ve decided to write a series of posts about being a special needs parent; to offer support to those in the trenches like me, and to give a glimpse into what makes parenting a child like Fulton or Teddy different from parenting an Addie, Byron or Edie. (I’ve got several posts in mind, but if you have any specific questions, please ask away below or email me.)
7. Within the next few weeks I’m planning to create a Facebook group for those who’d like some support to complete the retreat outlined in my newest book ‘A Worthy Reception’. If you bought the book, or are thinking about it, but would like a group to help motivate you and offer discussion during the four-day retreat, head over to my Facebook page and let me know! The book is designed to be used Thursday through Sunday and so on those days, I would post reminders to read certain sections of the book, along with some questions for each day to discuss. There’s so much junk on Facebook, I’m alway happy when I can use it to create a real community amongst my readers. Please join in!
So that’s my Takes for the week (that are never quick). How was your week? Write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Hey Kelly, I’m a stalker who’s finally commenting. I’d love to know or maybe you can give some ideas of appropriate and helpful ways to respond to seeing people in wheelchairs, etc and what we should teach our kids?
Do we ignore them and pretend they are “just like everyone else”, do we acknowledge them and say something (kind) but then run the risk of making them and their parents feel embarrassed for being noticed?
I’d like to hear your thoughts on this too! 🙂
Kelly, Sorry about the bats. Maybe you should have invited them nicely to come to the zoo with you. Love hearing about your adventures. Thanks! Annie
My neighbor freaked the heck out when she found a bat chilling on her umbrella OUTSIDE last week. Now I think I’ll tell her it could be much worse…baby bats living in your house! Eek.
I really enjoyed your SMA posts last year and are looking forward to more!
That book sounds awesome!!! I totally need to read it sometime. Thanks for the recommendation!
As a parent of a daughter with special needs (DS), I was wondering how you chose to balance advocating for awareness for your child’s special needs and just living your family life? I sometimes feel like I should be doing more for the DS community, but Buddy Walks and all don’t seem to fit with how our family works. Does a family with a child with a special need have to be out there on the front lines? What do you think?
Thank you for sharing that rant and the added experience from behind the scenes. That helps me as a parent of children without any special needs know how to behave in these situations.
Question for your blog series: As a parent of children with obvious special needs and adaptive equipment, how do you wish other parents handled these meetings? What *should* I do when my tactless little children ask questions loudly, or stare, or point? I don’t want to come up and bother strangers (e.g., come up to you at the zoo), but I don’t want to ignore your kids like they don’t exist. I’d love to read an article helping me out as a parent.
Lastly, BATS IN YOUR BEDROOM.
My question: what should parents say in the moment to their kid who was just insensitive about a special needs kid in front of them?
I also wonder about the best way to approach children with disabilities – but I just do it like do all other children – with a hi, a smile, and a random compliment about their shoes, hair, smile – whatever! I hope that people can feel my genuine heart in my words 🙂
I ALSO want to know if you book can be used with ‘life’ – meaning is it for a retreat where you are away from household/family responsibilities – or can you fit it in during morning/evening prayer? I assume the latter – but thought I would ask the expert. I am thinking of forming a little group of my own with people from my parish!
Ok so about the bats…we had two in our house when we first moved in. We had a company come that basically plugged up any teeny holes they could possibly get in, and then install a tube that had a trap door on it so any bats inside our house could fly out (to find food) but then not return through. We never had a bat problem again! Good luck with that situation, I remember sleepless nights because I was afraid the bats would find our kids…yuck!!
I was telling the my kids the story about your bats and I promised them I’d come back and find out what happened. Well, now I know. We’ve had bats outside but to find not one but numerous bats in the house… I can’t even wrap my head around it! Also, as for the questions to answer, like the first commentator, I always smile but never know what would be appropriate to say to the mom or to the child. Also, if one of my own kids says, ‘What’s wrong with that boy?” loud enough for you to hear what kind of response should I tell my inquisitive child? And to you? Thanks for keeping us informed and I’m sorry that your mama heart was hurt by rude people!
Have you seen the Special Needs Hackathon? I immediately thought of you. Also, y’all are, I think all in New Jersey. https://littlesacredspace.wordpress.com/2016/07/19/join-our-special-needs-hackathon/ (this is not me, it’s a college friend, but thought you should see.)
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