Changes


Changes to the website

Well, it was a long time coming. Yesterday we were able to make a change so that the unspokenlove url will point to this blog, meaning, essentially, that this is now the home of ULove.

It took many hours of work to get that website up and running. So, as you can imagine, it was difficult to say good bye and let it go.

But changes can be good. And we’re looking ahead to the future and what possibilities might lay ahead for us. Something good and grand can be just around the corner and that’s what we’re focusing on.

Happy Monday.
ULove

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What do I want for her?


What do you want for her?

I hated that question. I still hate the damn question. It takes me back to when she was born and a doctor on the night shift came in to talk to me and had said something to the effect “Hey these people (people with DS) work at Mc Donalds nowadays!” I need to be clear, my issue is not with the concept of working at Mc Donalds, either in maintenance or management or anywhere between. It was that the thought being expressed is “since we both *know* she’s never going to college, there’s always fast food.” Because sure, every brand new parent wants to have that goal for their kid in their head.

I still hate that question.

I’d sit in the IEP meetings with people who had no clue what my beliefs were, didn’t care really, didn’t understand how I believed that it was all a moot point. Someday soon, she would be ‘fixed’. Why bother? Why worry? I just had to make it past Armageddon. That’s all I cared about. What do I want for her? I want my daughter to make it past Armageddon.

Oh goals? What goals? Goals.

Now I here I sit and look at my 13 year old daughter, focusing on her behavior issues and the goals are too many to list and I know that I can’t do this alone. But I also have little confidence in the local district. I have little confidence in myself, really, to accomplish what seems to be the impossible.

For the record, I no longer believe there will be an Armageddon and I don’t think that my internal response towards the question of what do I want for her was typical of a person who believes that. That was my response. It was a hopeful response. One that came with this absolute faith in what I believed.

Here I am 8 years later, my faith in that Armageddon completely dismantled; the faith in myself takes a step forward and a step back, or sometimes three steps back. How do I feed that faith in myself that I can do this? How do I believe that I can accomplish the impossible? Supermom my ass. Get me through the coming winter without me losing it and I’ll consider adopting the moniker “supermom in training”. Until then, I am facing what seems to be the task of leaping skyscrapers and racing past speeding trains doomed to fall off a cliff only to save the one passenger inside: my kid.

I just read about the issues that come with a kid with DS just a few minutes ago, and I see scary similarities. Recognizing the panic that settles into my core before erupting in a nervous stomach, I make the mental list that I know needs to become a detailed printout to-do list with notes and links and business cards and “You Can Do It” stickers from the teachers store, some for me and some for her.

I feel like I need a spattering of fairy dust and a pair of wings. Forget SuperMom I’ll accept Tinkerbell badassery about now.

So, jeez oh peets what brought on this post? Another morning of battling with her to put clothes on so we could get her sister out the door for her classes. Physically making her move was about the only way to do it. Sucks. I feel like the worlds worst parent. But I can’t leave her home and I don’t have a person to watch her. And keeping us all home is not the answer.

I think school is the answer. Is it? I’m not sure if it’s the answer to one problem only to adopt another 10 problems with no answer. I go back and forth. Yes, I can be the ultimate flake when it comes trying to figure out what to do. There is no single answer for her or the problems we have with dealing with her. It’s too damn complicated. So I put school on the plate, and then I take it off. Then I just pour a cup of coffee and close my eyes and look at the laundry we amassed in ten minutes.

What do i do? I suppose it starts with opening a new doc page and start listing the goals that I have for her. Everything from interacting with others to making a pot of coffee. I think we should each get a sticker for the day.

~Meagan

 

Meagan

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The straight ‘poop’


Down Syndrome and Constipation

The two go hand in hand if only because of the low muscle tone which so many people with DS deal with. My not so educated but practical guess is that the low muscle tone in the trunk region makes it difficult for them to literally push the feces out. When it doesn’t come out it’s going to get backed up.

What happens when your kid gets impacted?

Hannah had been taking Miralax for 10 years and in the last year or two it didn’t seem like it had been working as well or we had a hard time getting the right dosage. We took a break from it thinking we would be okay with upping her natural fiber and such. Big Mistake. By mid-Sept she started to slow down in her eating and drinking habits, and by October we had her in the hospital, not once but twice.

The first time they said it was a UTI. The second time (yes, you read that right) they realized she was badly impacted. It was not just humiliating for her, but downright painful. Watching her go through a catheter and two enemas, and then a doctor physically removing the feces was heartbreaking. Total hours in the local ER that Sunday: 10.

So, we vowed that we’d rather work at keeping her on the loose side rather than ever let it get hard again. And considering the scripts for the meds the doc sent us home with, it was obvious he felt the same way. And we’ve definitely stayed true to our vow, despite multiple messes as she’s basically been learning how to get to the toilet on time and in the process has messed her pants more times than I can count now.

The Lesson I Learned

And just when I think I can’t possibly learn more about what it means to have a special kid, I learn something amazing. I realized the other night that even my own sense of compassion for her sometimes needs to be refilled. I was grumbling just enough for her to hear me about needing to get to the toilet on time. When I looked up: yeah, I made my kid cry. Wow, what an epic moment in my life. Just when she needed me most to be loving and compassionate and a damn mom, I let her down.

Since then, I’ve really watched myself to make sure I’m not focusing on the wrong, stupid thing. Sure, I get to clean it up, but I’d rather, boy would I rather, be the one cleaning it up. The blow to a person’s dignity when someone has to help them with such a personal and private task is huge.

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Breaking your kid’s heart when they need you = parent fail.
Learning from the moment = score!

Life as a parent with a special kid is hard but I have to tell you, I learn more about what it means to give from the heart than I ever could have imagined.

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Special Needs Sibs


The Special Needs Sibling (and babies)

So, yeah it’s been a long time, but my excuse is that I’ve had a baby. What’s your excuse? Oh, right, you don’t need one. Wow has there been a sharp learning curve the last many, many moons. Catching you up to speed, I had another beautiful baby girl this last spring, she’s an amazingly spirited child. Lots of energy, keeps this ol’ lady on her toes. Yes, the girls love her, but the truth is, Hannah has had a tough time getting used to her. As with most other babies, this one came with a loud voice and that loud voice stresses Hannah out so badly that at times she simply melts down at the sight of her sister.

I would LOVE to play the “well this is what I’ve learned and how to deal with it” card, but I can’t. In fact, my most human moment came the other day when I sat with baby in the backyard and looked at her and kissed her and told her “I love you, but I honestly feel like I’ve screwed up Hannah’s life by having you.” Isn’t that horrible!? What mother says that? I told my husband that and he laughed at me and said, “a little late for that.” Men. So, no answers. But learned what has kicked up a recent cycle of crying in the car for lil Tuesday. Now comes the difficult task of getting Hannah to not hate driving with us all together.

So, I guess my big goals for now, at least until the bright and shiny Universe that has the sense of humor of Mad magazine throws an enormous monkey wrench into our lives, are to find ways to help her cope with the stress, get her diet back on track and get her back into OT/PT and Speech (at Beaumont!!). 

The funny thing is, I have only briefly considered using aromatherapy, but think I’m going to aim for it. Maybe lavender. I wonder how I can use my lavender plants for her? Hm, maybe a big ol’ rice sock with lavender. …….

Well, my apologies for not being here. I have had a lot to think about. I hope that over time I can express these things in bits and pieces. As for the business itself….. idk what’s going to happen. I wish I did. It’s in a deep slumber, we have shirts in stock but rarely get orders, okay, well never. And that’s okay. We dream of what we’d like to do with the poetry and stories and characters. But family first. And if it’s meant to be, it’ll be.

Best wishes

~Meagan

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Entertainment: Movies about people with special needs


Some of our favorite movies are those that have a story line based on a character with a special need of some sort. Seems like winter is a great time to grab a hot cuppa something and curl up to watch a great movie.

SO

Here is our top ten list of movies we think rank at the highest:

10) Benny and Joon: Mental instability manifesting as pyromania

9) The Other Sister: Mentally challenged/delay

8 ) As Good As It Gets: OCD

7) Of Mice and Men: Mentally challenged/delay

6) Shine: Schizophrenia

5) A Beautiful Mind: Schizophrenia

4) Radio: Mentally challenged/delay.

3)  The Eighth Day: French/English subtitles; Down Syndrome

2) A Beautiful Mind: Schizophrenia

1) I Am Sam: Mentally challenged/delay

 

xoxo
ULove

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Make an Imagine Peace Wish Tree


Scrolling through our fave web pages I checked in on Yoko’s Imagine Peace site and found a fab idea to make an Imagine Peace Wish Tree.
The story is, as I understand it, the first Wish Tree happened in 1981 after John had passed away.  Since then she has collected over 400,000  wishes that will be put in a capsule and buried around the Imagine Peace Tower in Finland.

Love, love, love the basic concept of making an Imagine Peace Wish Tree.

Check out the instructions on Yoko’s site, www.imaginepeacetower/yoko-onos-wish-tree.com

xoxo
Ulove

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Being Sick


Argh, this had to be the week that the kids got sick. Why now? Of all times? The week of our Holiday Party, the week I finally get to meet up with a really amazing friend, the week that I was supposed to get so much done. Why!?

Germs. Argh.

So this weeks Top Ten will be all about being sick and how to deal with it, both practical advice and totally silly. So, much of this advice comes on the heels of two kids being sick with something like the cold/flu bug.

And I’m changing how I do it. I’ve been doing 1 through 10 as opposed to 10 – 1. Get it? Think David Letterman or Vh1’s “best of” everything.

Drum roll…

10) Sleep. Yes, sleep. Call in, send a note to the school via a sibs back up, whatever you need to do and follow the rules, sleep. There’s no getting around the fact your body needs to rest.

9) When you wake up, or the kid wakes up, chicken soup. Make it from scratch if you can. It’s really not that hard. My friends swear by letting the chicken carcass rest in water for about 10 min with a tsp of white vinegar. Bring to simmer with bay leaf, carrots, onion, lots of garlic. Personally, I like to take the carcass out of the water after it’s been cooking a bit and begins to soften, break the bones a bit, cook a little more. Take the veggies and bay leaf out, add some fresh chopped veggies, cook til soft. Add cooked chicken and noodles, salt and peppah and mmm chicken soup. There. Done. On a side note, my kids like either really wide noodles or broken up vermicelli.

8) Dig out the coloring book and crayons and sit back and color for a while. Great therapy for both kids and adults.

7) Drink your oj or some other juice which is high in vitamin C. And plenty of water too, but you knew that. Avoid caffeine and alcohol please. And while I’m sure none of you are giving your little ones a glass of wine at night, watch for that caffeine in pop and tea.

6) Cartoons are great and all and I’m not one to bash Spongebob, I actually like the fella, but this is a great time to sit down with the kids and try something new. I am a huge, absolutely huge fan of Mythbusters and The History Channel. It’s a great way to talk about science and history and geography. If that’s not on, and you have a way to step out to the library for a minute, check out some fun videos that incorporate some learning into the fun.

5) There’s always Star Wars, which, if you’re anything like me, is appropriate for most ages, especially IV, V and VI. I, II and III meh, maybe a little older.

4) Candy canes. I got this from a friend of mine on Facebook. The peppermint is apparently good for many things. I’m sure the sugar isn’t helpful, but seeing as many homes are dripping with candy canes right now, grab one from the tree and sit back with your feet up to watch Luke and Leia fly through the air.

3) If your head is not too weighed down in gunk and you can manage this task, reading is a good way to kill the time. I don’t recommend trying to wrap your head around Alex De Toqueville’s “Democracy in America” at the moment or reading Jane Eyre to your 10-year-old. Lighter reading. Think Geronimo Stilton for them and Joan Hess for you.

2) Paint your nails. Or their nails. If you have a son, show him Steven Tyler’s pic and do a sweet black stripe down the nail. When Dad comes home tell him that your son knows what he’s going to do with his life.

1) Make a bucket list. Help them make their own, make a family one or cuddle up with your tissues and oj and laptop and make your own. What better way to get healthy than to think of all the great things you have yet to do with your life?

I hear one kid coughing a bit, and the other needs something to drink.
Get healthy and have a great Tuesday!

xoxo
Ulove

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