Wednesday, August 28, 2013

Baby Steps

Most days Scott takes the kids to school on the way to work. Knowing that Tuesday is the day of 3 therapies, two in the morning when I fight rush hour, he was very gentle when he told me I had to take the kids to school because he had an early meeting in South Georgia. I was happy-ish to do it because Mae had speech at 9, and I could drop the kids off and head straight to therapy. Mae fell asleep during this car ride and slept for a full hour, so I was a bit nervous about her cooperation as I pulled her out of her seat. Wasted energy, that worry.

We started with PT, Mae was on the swing standing up and holding the ropes to work her weight shifting muscles. Normally she'd fuss, but she was all smiles and good form and squats. We moved on to sit ups on the therapy ball, where Nasty Nellie usually makes an appearance, but Mae laughed instead of crying as she flopped back and went limp in an attempt to get out of doing all this work. After the situps it was standing against the ball playing bilaterally with her hands in front to get those pectorals nice and warm. Lastly, we practiced walking. Walking practice is the cuddle phase of PT. Walking practice is Mae going from Miss K to Mama with various muscle support and tactile reminders to contract at the right times. When she gets to Mama she hugs and cuddles me, but this is just a sweet manipulation to get some rest. Sometimes we wrap ankle weights around her hips to give her muscles all the input through her legs to her feet. (I'm wording this all wrong FYI.) Anyway, this time she sat on Miss K's thigh, feet on the floor and did some squats. She kept standing unsupported and then lunging for me. Finally Ms. K said, "Use your steps Silly!"

She took two steps.

Now before anyone decides to comment that she'll be walking in time to trick-or-treat, slow your roll. Let's just celebrate the win for a minute or two. I have been, and I've been trying to recreate that moment for the kids, for Scott, for Mrs. J, and for the dog all to no avail. She did it and we're going to have to work for it to get it again. Duly noted, little Miss. You guys, she took her first steps. And you bet your ass I cried. Can you imagine for a second spending weeks and months working on strengthening every damn muscle and nerve to accomplish one step? And we got TWO OF THEM!!!!!!!! (Stuff it Mark Twain and Alex Knight, you don't know me.) That is all I feel I need to say about it, because the mere fact it happened is enough, you know?

The day just got better though, with actual responsiveness to the Speech therapist who was all, "Oh my gosh, she's talking and signing like it's no big thing!" Given our Miss M isn't the gooshy type, this was gigantic. Her only concern was so mild we spent 30 seconds on it and moved on to how Mariana is probably the best 17 month old baby in the world, probably universe. I obviously couldn't let the day go by without celebrating. I went to the store and bought some ice cream for the kids' after school snack, and we enjoyed every bite. I also called and texted my family the good news, and was greeted with the exact amount of enthusiasm a milestone like this deserves. Well, no one offered to fly down and have a party with us, but they were close to the amount of enthusiasm a milestone like this deserves. They're probably saving up for when she is potty trained.

I did not light fireworks, cook dinner or even bathe the baby last night. I reheated leftovers and went out to B&N to not find the book Kate needed for school yesterday. (Let's all throw a party for Kindle, btw.) However I did do those things in my heart. Because two steps forward is two steps forward, and that's cause for celebration in my world.

Monday, August 26, 2013

Join The mAe Team

Here's my push. First of all, when we had Mariana I knew very little about Down syndrome. I did whatever the doctors said. I made my way when she was 4 mos to therapy and dismissed much of what they told me. You see, Mae did all the things she wasn't supposed to be able to do and she didn't do the things she was supposed to do. Somehow my mind began to view her as a Down syndrome prodigy. She was fine. And frankly the idea of Ds becoming our family thing seemed exploitative. Clearly I was having some kind of post-partum mind melt. It was a weird involuntary level of denial that I only recognized when she wasn't sitting up at 8 months. I wasn't surprised she wasn't sitting up, I was surprised I hadn't really noticed. I know.

I did connect with the Down Syndrome Association of Jacksonville, or DSAJ as the cool kids call it, and I saw certain things on Facebook that I would click through and read. I learned many things that are available in Jacksonville. I was also linked into national and international organizations that lamented the lack of programs for individuals with Down syndrome. Here I was in one of the richest environments I could have hoped for and I wasn't taking advantage of much of anything. Cue the inappropriate guilt.

When we went to Hope Haven in April I ended my day with Debbie Revels of the DSAJ. She told me about more programs for adults with Down syndrome. I learned that the DSAJ covers some of the cost of therapies at Hope Haven's Down Syndrome Clinic. There's no paper work or going in with your hand out. It just happens before you get your bill. Even though Scott and I are able to provide what Mariana needs, having someone toss a little help your way with no expectation of further involvement feels like an umbrella of kindness in a storm of insurance paperwork and medical bills.

I have slowly edged my way into being more involved in the DSAJ. I went to play group, Mae was the FB "Star of the Week". I had a few "help me!" emails and phone conversations with Karen Prewitt. I'm looking into other things that might build a community bridge for the DSAJ and another place we spend a lot of time. (I don't want to mention it because I hate speaking too soon.) I have committed to the Buddy Walk.

I'm not big on fundraising. I guess I've been around it so much I have a little fatigue in this arena. The reality is that the DSAJ gives our community so much! The individuals and families that the DSAJ supports helps people with Down syndrome become better citizens. The list goes on and on and I encourage all readers to look at their website: I anticipate being a part of this organization as long as I'm alive, and I'm sure Mae will as long as she is alive. How many nonprofit organizations are there from birth through adulthood? I imagine not many.

My goal is simple. I want 10 team mates to walk with us and I want to raise $1,000. Okay, I want to raise 1,000,000 and be the best fundraiser ever, but I'm overly competitive that way and capping it at $1,000. If I can get people to just donate at least $3 to The mAe Team in honor of the three little #21 chromosomes she carries around in each cell, I would be thrilled. The mAe Team button at the top right is how you get to our page and I would love it if you would click through and consider a donation. (You are more that welcome to donate as much as you like and I would even grudgingly accept going over our goal.)

The mAe Team
Hannibal: played by Kate Fryman
B.A. (Bad Attitude): played by Charlotte Fryman
Faceman: played by Molly Fryman
H.M. Murdock: played by Paul Fryman

Friday, August 23, 2013

Friday Quick Takes

The first week of school is in the books y'all! Lots of tears and melt downs ensued, as you can imagine with  kids in 4th, 3rd, 1st and PreK. Okay, the 4th grader was pretty much fine other than the fact that her stupid siblings were buggin her while she was trying to get her homework done, you guys. Also her mom has ice water in her veins and was all, "You'll get used to it."

Poor Molly didn't realize that first grade is the real deal, so that was a fun week of homework. But I'm a different mommy since Mae has come along and taught me to divorce myself from the feeling that my crying child needs my assistance, and instead actually evaluate the situation first. In other words, I didn't sit next to Molly while she completed her Handwriting homework at the agonizing pace of 1.5 hours. Her tears and distractions made no impression on me other than the thought that this was so good for her to break past her self imposed limits on her patience and ability to complete a task. But I'm not a robot. I did give her lots of hugs yesterday when she was obviously exhausted from the week of school and I told her how incredible she was for working so very hard. Then I made her do her homework.
I plan to annoy my children this school year. My current mode of annoyance is writing messages on our refrigerator. Messages like this:
Mommy's subliminal message regarding dinner: Like it dammit!
Charlotte's response to this nonsense was, "How am I supposed to know if I was the kindest kid in the whole school? That's too hard!" She's a very literal child, so the next day I wrote in the morning, "Be the kindest kid in class." Charlotte responded with, "I can't decided who is kinder than me and what if I don't have a chance to be kind and someone else does?" Morning is not her best time of day. So the next day I wrote, "Find a way to be kind to someone." Which apparently was setting the bar too high as each child reported that they had zero opportunity to be kind. However, Kate did everyone's morning chores this morning, so BONUS POINTS, someone learned a lesson!!

I know this is annoying to the children, but I feel very secure that it is the right kind of annoyance, like my dad saying "Offer it up." whenever we were sick or injured.
Mae had an ophthalmology appointment on Monday. She had her tubes removed, and by tubes I mean tube because the left one fell out at some point in the recent past. We also learned she doesn't actually have a "lazy" eye. But it is common for kids with Ds to have a "false strabismus" because of the shape of their eyes and nose.

We also discovered that her eyesight is still very good and she does not need glasses. While this is very good news, it's also a little sad because I had visions of little hipster glasses and ironic t-shirts. Bummer dude. Oh well, there are always fashion glasses....
Also on Monday Mae had a horrid fever that subsided by Tuesday morning. So, we went ahead to PT where she got more Rock Tape on her abs, but also her shoulders! It really helped a lot! However, the next day she had a rash on her body. I am almost certain it was a viral rash from her fever, but before I order the pink camo tape, I'm going to wait and see if it happens with the next application. I'm so hoping it is not an allergy. I love the stuff.
--- 5 ---
Directions on how to mop your floor with a toddler at home: 
  • fill some containers with water
  • give diaper-only baby little containers to play with 
  • mop other places while baby plays
  • take water play away
  • clean up water with big beach towels
This is by far the easiest way to get my miles of tile cleaned. You are welcome.

OT on Wednesday was terrible. Mae was sleeping and I woke her up while Mrs. J was there. She came down and waved and said, "Hi!" to her dear pal. And then the doorbell rang. When Mae saw Mrs. K she went to her inside place. Her chin slumped to her chest, her tongue hung out and she wouldn't make eye contact. In other words; she knew.

There was a spectacular fit. There was an attempt to have her self feed with a spoon. She was furious and sad and gave Mrs. J and I looks of betrayal and pain. She was pissed, but - isn't there always a but with Mariana? - she ate yogurt with a spoon. Yes, it was all over her from head to toe. Yes, she regards the OT as the enemy. Yes, I stood by while my baby pleaded for me to save her from torture.

She ate with a spoon. WIN!
Cutest couple ever:

For more Quick Takes, visit Conversion Diary!

Thursday, August 15, 2013

School Daze

Admission 1- I hate sending my kids to school. I enjoy their company so much, and I really don't like getting them back only to jump into the PM relay of homework-snack-activities-dinner-shower-bed. This fall I opted out of fall sports just so I can ease into the chaos.

Admission 2 - I love the first day of school. There is something about the new routine, the uniforms, the fresh crayons and optimism that just makes me feel like this is the year it will all go right. I'll stay on top of the calendar, the homework, the hygiene and volunteer like a boss. It is like a new year resolution; full of hope and full of crap, and I fall for it every year.

Admission 3 - I'm okay with both of these realities.

Mariana has made some leaps forward. We've really focused on good communication, and she has responded. At PT we put some K-tape on her belly to help with her core strength, which is good for her balance. It's doing great things, including forcing her to use her upper body strength more. For example, in climbing the steps she would often rest her belly on the step, but with the K tape she isn't so inclined to do that. You can tell she's getting tired from how often she rests her head on the floor. But already I have noticed in increased strength in her hands.

I really thought giving her choices was going to be a disaster, but she is in a compliant phase and she is very much interested in choosing. Yesterday I had two cups set out. One had juice, the other had milk. I would point to the juice and ask, "Yes juice, or no juice." While signing "yes" and "no". She has created her own sign for "no" by wagging her finger, as seen below with Mrs. J.

She said no to the juice and the milk, but when I asked if she wanted juice, milk or to eat, while signing the word "eat", she signed "eat" back to me. This is HUGE, like puff-your-chest-out huge. There was no knocking things onto the floor, arching her back and yelling "Na!Na!Na!" at me. Just a choice made and communicated, easy-peasy.

She also tried to use a fork. I think I've mentioned that sweet miss does not like to change how things are done. Once she can do something, that is what she does. This is why I've already started putting her on the potty. Hopefully in a few years, when she is ready to learn, she is not freaked out by the change. Anyway, I gave her a fork yesterday and she tried, unsuccessfully, to use it. It is totally fine that she wasn't successful and that after she tried she threw it on the floor because all of this was done with a calm demeanor. There was no flailing or yelling, just, "Well, that's not working." Tosses fork, uses hands. She also didn't object to using a bowl. Big big strides y'all.

As the video above indicates, it's not all sunflowers and ribbons up in here. We still have attitude and diva time. She is not loving the K tape and she is so loving the finger wag. She's also increased the hair pulling and face pinching, and oddly I think it is because she likes that I wag my finger and say, "No-no." and then show her how to be gentle while saying "gentle". She always tries to repeat the word "gentle" and it seems this has become a game.

It's been a fun week with all of the progress. It's a good reminder that serious behavioral nonsense can be an indication of good things to come. Frustration is a good thing when it leads to growth, and this week was a positive check in the problem solving box for Mae. I hope that it continues as the school year goes on because I could really use one eager student in the bunch.

Thursday, August 8, 2013

Rule Change

Babies keep you guessing, much like my hair.

The story is the same every time. We say she can't, and she goes and does. This blog is about to become my negative wish-list for Mariana, except she'd figure that nonsense right out. 

If you read the last post, you know it's all been a banquet of fun around here. Mae was literally tearing her hair out, I was figuratively tearing mine out, and we just couldn't get. it. together. So I complained publicly many times to anyone who would listen, or was being paid to listen like the therapists she sees. Many were eager to explore possible sensory issues, which, sorry, no. Therapists see so many sensory problems in kids that they are very quick to explore that avenue first, and while it is their job, I have zero appreciation for it because we don't have that problem, and I don't need to be seeing ghosts right now, you know? You talk about it enough and suddenly the fact that the baby is on her belly flicking a tag under the couch is a clear indication she is "seeking" and all is lost. Except babies are on the floor a lot and notice things we don't, so she's just trying to see what that stupid thing hanging under the couch is, and thinking "Don't any of these idiots see this thing? Y'all need more tummy-time."

Inspektor Baby mustache you a question..
Anyway, I was dreading the Things we Must Introduce portion of this week, but bought a stupid snack-trap and recessed lid sippy anyway. We have, by my estimation, 689 different sippy cups, but none are a recessed lid cup, which is apparently the thing to have.  We had a snack trap back in the day, but your guess is as good as mine as to where that thing is. Anyway, after the OT consult turned into a speech consult, I decided I was going to just try the snack trap. The one I bought is not the hand scratching fool thing of yesteryear. It's all easy-peasy and would probably spill baby snacks all over the car just like an open container, but it's therapy, you guys. It matters. I handed it to her and felt the hair on my neck stand at attention preparing for a fit, and....she took it, looked at it from every angle, reached her fat baby hand in, and pulled out a snack. She used it properly is what I'm saying. Like a regular toddler, all NBD, I got this.

So after a mild-mannered and cooperative day from the artist formerly known as Diva II*, I prepared for a day of normal-for-her behavior. I planned on introducing the sippy, excuse me, recessed lid cup, today. She woke up happy and cooperative again, just to throw me off my game, but like a boss I stuck to my guns. The cup she usually uses is called a Cip-Kup, which is pronounced "sip cup". (I hate weird spellings of words that already exist. It is not, and never will be, cute or clever.) It is very special and important to oral-motor development, has approximately 43 parts and costs $20, plus shipping. It looks like this:

Flax milk and a Cip-Kup; You know that's right.
Today at lunch I switched it up. She was so cute, signing more when she wanted more, signing "All done." when I told her it was all done. She was charming and sweet and I was about to mess it all up for the sake of her advancement toward becoming a tax-payer. I filled the new cup and offered it to her.
So it's cola, but it's organic cola
Now I was so nervous I filled that cup with straight juice. Juice and my kids have a history, and it's not good. You give my kids juice before the age of 4 and they went crazy. I mean, you could have given them coffee and had a more relaxed child on your hands. I've always let them get Sprite or lemonade before we knew about Molly's issues, and they were well behaved, if a little more giggly. But juice, have mercy! I would have rather them mainline pixie stix. 

However, the result was a girl who thinks sip- recessed lid cups are the bees knees. Even after I swiped it away, dumped 2/3 of the juice and filled it with water she loved it. Which is how we know babies are jerks. When you've done accepted the way things are, they up and change the rules.

It's my long lost friend, the recessed lid cup!

*Diva II comes from my sister, La Dee. I'm sure I could explain why we call my sister Diva, or La Dee and variations there of, but it's one of those things that grew organically and would take too long and not be funny in print. But Mae is La Dee Deux, or Diva II, after my sister.

Tuesday, August 6, 2013

99 Problems but a Female Dog Ain't One*

It would seems that all the therapists agree. Someone has a behavior problem. We've been discussing it with speech, developmental, occupational and physical therapists and it all points to one issue: Badassery. I mean, actually, it's probably a speech issue; as in, I know what I want and you fools are jacking me around, yo. Let's review some of the causes of frustration:

Frozen peas
Frozen blueberries
bath time
being taught to climb down the steps safely
being helped to walk
sit ups (oh, who am I kidding? Me too.)
getting out of the bath
getting dressed
brushing hair
reflux (sorry baby)
teeth (will it ever end?)
light switches

I interrupt this fascinating list to discuss what is now being called The Bedtime. By bedtime I mean the process by which I used to dump a tired baby into her crib and she would magically fall asleep. Look, I can be a pretty tough cookie when it comes to routine baby bull. Napping in the crib isn't one of those things. At our parish they have the traveling Madonna. In our house we have the traveling napping baby.   Yesterday she napped in my bed and today she napped on the couch. If the child will nap, I will find the place she will do it. Even if it means staying in the room so that she doesn't launch herself head-first onto the floor.

Welp, all of her majesty's issues are basically down to the fact that she wants to communicate, but cannot. Our OT consult helpfully suggested that I make a picture board with magnets, a white board and photos of things she is allowed to have during the day. Photos I was clearly meant to have on hand because....? Looks like Brad, my brother in law who stupidly said "yes" to making me picture cards of animals, has a new mission. A more specific mission. One with a time limit that he will find out about when he reads this post that I am going to email to him upon completion. Thanks in advance, Brad! The idea is that she can get a picture and give it to me when she wants something. That sounds pretty great, but it also means getting photos of every food, toy and book in the house. And yes, I'm putting a photo of her crib, because, hope springs eternal, even at the end of summer.

Plus more signing. Wanna know what Mariana's all-time favorite sign is? "All done." Her philosophy regarding this particular sign is "Use it early and often!" So, learning new signs should be fun.
Mae: "All done!"
Me: "Cat!"
Mae: "All done!"
Me: "CAT!"
Mae: NAH-NAH-NAH! (aka: no! no! no!)
Me: *slugs whiskey*

Which is why we have no alcohol in the house. It's a budget buster, man.

There are more problems to complain about, but I think it's time for me to go. Little people keep asking if it's dinnertime and I almost snapped, "NO! It's the middle of the afternoon!" except it isn't. Whoops.

*This title is brought to you by a suburban mom who Shazams all the lyrics to all the music on the radio. Yes I do.

Friday, August 2, 2013

Retirement of the "R" Word

Well, we've been traveling this road for a whole 17 months. This means we've had 17 months to hear the response of people to our child. We've had rudeness, the suggestion that we would have aborted, and a reaction in the Las Vegas airport that still causes me to pray for that individual because, dude, what a mess. Mostly the response has been "Squee! Baby!" type stuff. So my opinion, it's not well formed by heartache, and you should understand that I have not had the experience of having my child feel the pain of the word I am writing about today. We're still newbies. One time I did hear a boy call his friend "retarded" and when he looked up and saw me holding Mae he said, "Which means your adorable." He was about 12, and I mentally high-fived his recovery. But that's pretty much it. Others have been people to whom I could say, "Stop it." and they respect it. All this is to say, here, have a grain of salt to be ingested with the following post. Know that I don't know everything, but know that I have real hope for the future.

The Social Security Administration has retired the phrase "mentally retarded". In a sense I am happy. I am happy because the word retarded has morphed. It is no longer a simple word with a specific definition. It is now a word with a connotation, one of stupidity and ignorance. It is a word used to dismiss others as being less-than. It is a word shortened to excoriate someone's position. "Lib-tard, Life-tard, Islamo-tard" and on and on. It's a word used to harm and the government has decided to replace the word with "intellectual disability".

The word "mongoloid" never should have been coined. It began as a racist term equating those with Down syndrome with a race that was considered by elitists to be the least intelligent of the humans. It was insulting to the people of middle Asia and to those with Down syndrome. If you ever read the history of Down syndrome you are likely to come across this term and you are likely to be disgusted with its origin. If you are not, something is wrong with you. The people of the late 1800 should have known better, probably did know better and nothing but intellectual laziness and a faux sense of superiority allowed the medical community and the community at large to accept this term. I am glad the term is almost extinct.

The etymology of the word "retarded" is something vastly different.  It is from Latin retardationem (nominative retardatio) "a delaying," noun of action from past participle stem of retardare "to make slow, delay, keep back, hinder," from re-  + tardare "to slow". The sense of "educational slowness" is from 1907. In other words, it was only descriptive and nothing more. There is nothing in the history of language to feel this word was ever meant to be disparaging or dismissive. It has never meant "ignorant" or "stupid", only delayed, or slower, or hindered. Is this not an apt description of many people with Down syndrome? I know it is for Mariana. In fact, when people stop to admire her at the store my only frustration is how quickly they leave because Mariana's response is slow, but she can say "Hi." She can blow a kiss. She can sign, "Thank you". It just takes her longer.

But lest you think I'm married to the word, I am not. I have come to understand that the harm caused by the ignorant is too great to overcome. I have come to see the pain the word causes and I have come to accept that the word is not okay, not benign. I am just a baby on this journey and the wounds caused by the hateful use of this word have yet to be inflicted on our family.

I just want to take this time to say, please friends of all who fall into the category of "intellectually disabled", for the love of humanity, don't let people of ill-will strip this name too. If you ever hear this phrase, or some cutsie, shortened version like, "I.D." used as an insult, tell that person to get a grip and pick on someone who can fight back. If you are a fan of Ann Coulter and she uses this term, call her on the carpet. If you are a fan of Bill Maher and he uses this term, flood his inbox with protest. Do not accept the jerkification of our language. Do not allow the conversation to move forward. Say no to this type of abuse of our language. Because these people take words and twist them into bad stereotypes to describe the people they hate. The problem of course, isn't that the people they hate are harmed, it's that the people least likely to do anyone harm are.

This is why I am saddened by the news our government has changed the verbiage. I do not care what word we use.  When a word is changed because people use the current one as a weapon, it feels like the wrong people won.

I will leave you with an example from the gay community. They got it right. Don't equate our people with stupidity....