Friday, December 6, 2013

Quick Takes Rushed Advent Style

Happy St. Nick's day! We don't do St. Nick around these parts, except at school where the children leave their shoes in the hall and get a candy cane. Molly, being preshus, can't have your run-of-the-mill candy cane, so with an uncharacteristic burst of foresight, I sent in special candy canes. They happen to be full size where as the other children get a mini. Ha-ha! Take that corn syrup tolerant folks!
On her way out the door, Charlotte gave me a knowing smile and said sweet-as-you-please, "I know." This was a huge leap from a few weeks ago when, after Molly lost her first tooth, I had the Tooth Fairy talk with Charlotte. She was not happy. She said she felt like we lied to her and, if you know Charlotte, this is as good as betrayal.
Now, I have always woven into our Santa stories that Saint Nicholas lends his name to those who want to do good for others in secret. I had hoped it would make that particular talk easier. So, of course, I pulled from that to explain that sometimes growing up is scary and fairytales often help children understand the world around them. Parents want their kids to understand that while growing up can hurt (pulled teeth), there's always a gift that comes with it. She was grudgingly mollified. This made me nervous for the Santa reveal that was sure to come shortly after the Tooth Fairy. But apparently she at least knows the Saint Nicholas deal is the grown ups, so I wonder if she's willfully hanging on to Santa for one last hurrah.  
Molly has a second wiggly tooth. I would like to yank that sucker out before it gets all gross and sticky-outy. She is not having it. The other day someone opened the door on her face, and I sadly checked to see if it knocked out her tooth before I comforted her. I'm the worst.
Mae is progressing and not progressing. Therapy is fine, but home life is chaos. I've been in my Christmas Get It All Done mode, so that leaves little time for practice. I feel guilty, but I know myself, if I don't get my To Do list accomplished, I'm grouchy. It's Advent, that won't fly.  I have found that motherhood is often a lifestyle of prioritizing all the most important things. So, I thank God everyday that my husband folds laundry and my kids get paid a nickle for every chore they do. Things are getting done, except lots of therapy. (BTW, Molly and Paul only get a penny and only if I don't have to nag them. They are very poor, but Kate and Charlotte are very motivated. Soon, I may be poor.)

--- 4 ---
 Um, the cardinal of Chicago is coming with the bishop to say mass at our parish next week. I do not wish to bring the littles, but Scott is making me. Anyone know any speedy novenas for your kids not to embarrass you at mass? What about me not embarrassing myself? We are currently hosting a Flat Stanley, whom has been our guest for waaaayyy too long because of my slackeritis. I so want to get a photo of Flat Stanley with the cardinal and bishop. I mean, only Pope Francis would make that Flat Stanley project cooler.

I'm running out of Quick Takes. Actually, the cat just hissed at Mae, who deserved it because she's almost two and the cat is smart. But here's a few nuggets regarding faculty Christmas gifts from me to you: Alcohol. Even if your teacher doesn't drink, she can bring it to a party as a hostess gift. I didn't get all the teachers alcohol, but that is because I found something super cute that I hope none of the other moms are doing, but if they are, it's cool and returnable.

Here's another tip: Wrap all your presents as you buy them. Makes life so much easier. While you are wrapping, give your baby some scraps to rip, and call it therapy. I'm here to help, yo.
Knocking the books off the shelf and climbing on the table also equals therapy. And parental negligence.
My final Quick Take is a big thank you to all the good people I've run into these days. Tuesday I went to Starbucks because I didn't have time for breakfast and we bought a huge Nissan NV3500 that I was afraid to go through the drive through with. (Starbucks has an egg white wrap that I like.) I walked out carrying coffee, water, my wrap and Mae when a younger-than-me man asked if he could help and took my breakfast out of my hands before I could answer. He then called me super mom as I plopped Mae in her seat four stories up, and wished me a great day. Now this was a tiny little exchange that took all of 45 seconds, but it mattered. Contrast that with the black Corvette that has crossed double yellow lines to pass me on two different occasions only to hit the same school zone and not actually go any faster, and you can understand why I hound my kids about being kind. Not nice. Nice is just vanilla not being a jerk stuff. (It would be nice if Corvette would stop passing me like a ninja.) Be kind. Help someone pick up their keys, or crayons, or carry their project. Complement the librarian. Tell the kid who constantly annoys you to have a great weekend. I think the hustle of the holiday season is a great time to just find little ways to make someone else feel cared for.
For more Quick Takes, visit Conversion Diary!

Wednesday, November 13, 2013

Update Time

So, November and December are shaping up to be incredibly busy, in that awesome, yet slightly anxiety producing way. That said, I do want to write up a little update on Mariana's progress because, this week has been awesome.

First of all, the Buddy Walk was so wonderful. Our kids' school is just full of individuals who genuinely care about each member of our little community, and honestly, sometimes that's the best hug one can receive. We raised over 2,500.00 dollars for the DSAJ, and that was with minimal output from  yours truly. Others took our cause and ran with it, which is just so inspiring. The DSAJ is one of those organizations that I just didn't care much about when Mae was first born. I had a baby and four other kids. This was not going to be my banner cause, you know? The reality of life is that if you don't work toward something you need, you don't get it. I had a lot of God elbowing His way into my life that first year and learned so much about Mae's needs. This organization has highlighted the gift that individuals with Down syndrome are to the community. To me, that's the key to stopping the eugenics movement; showcase the dignity and there is no way to argue for the destruction. We are so blessed to have the DSAJ.

As for the actual walk, well Miss Thing did her thing, which is to say, she was contrary. Mama had it all planned out. We left the house at 10:30. Mae slept on the way. We had fun, and some lunch, took pictures with the school cheerleaders, and met up with our teammates just before the walk. Mae fell asleep in the stroller. Wait. Oops, that wasn't the plan. Okay, Mae slept the first 1/2 mile. I picked her out of the stroller, as my hooligan children splashed in the freezing ocean. It was windy, so Mariana woke up. The last little bit I placed her on the beach and called her to walk to me. She stood there. She saw the cameras and she posed. She clapped. She waved her finger in the air. She laughed. She did not walk.

Here's the benefit to having a contrary child who also has a disability; you sort of delight in their individualistic behavior. The reality, when you hit the therapy circuit, or you are first telling people about your child's condition, is that suddenly your kid becomes that disability. That is to say, the disability becomes the most remarkable thing about the child. Obviously, hey, the therapists need to do their thing, and we have great ones that do highlight Mae's personality and delight in her. However, when you hear, "Oh, they are such nice people." a million times, or, "Yes that's very typical for kids with Down syndrome." you kind of delight in the non-conformist behaviors.


Moving on. We had some big milestones hit this week. The major ones have to do with Mae's walking. We are working on getting her orthotics! This is awesome news because orthotics are a very common need, but the need for them only comes when you have a proficient walker. Given that Mariana can walk, pivot and walk in the other direction as well as step up on a very low step, like onto a mat, she is now a proficient walker. WOOOO! So far, we are hoping to get away with the minimum of a sole insert, but we'll see. 

The second big deal is that we are now able to reduce her use of the dreaded, yet slightly adorable, hip helpers. Now we are going to put super tight leggings on her for the input, but the hope is that she won't need the control to keep her stance narrow. So far taping her belly with Rock Tape is doing the trick. Unfortunately Rock Tape ain't cheap, but that's the breaks, right? I will say this for Rock Tape; it works miracles. Charlotte pulled an ab muscle and was not resting it sufficiently, so we've taped her a few times and the difference has been magical. In terms of kineseo tape, this stuff is the best. You runners go get you some!

The current focus of our lives is language. Mae can repeat just about anything. She knows how to ask to eat and she knows how to tell me "No" and "Stop". However, she doesn't label or request things like calling for Scott or one of the kids, or asking for her cup. So, we have a huge project in mind for the weekend. We're going to paint our little half-wall with chalkboard paint and hang a magnetic whiteboard as well as a strip of velcro. Then we are going to put velcro on some play-kitchen items and print pictures of them. Then we'll work on having her go get them from the pictures. We'll also being hanging pictures of people and requesting that she retrieve those. It's all very complicated sounding, and it is. The deal is that she has this youngest thing working against her because she has no need to request items. She's got all these big people to get her stuff. So, while she might say things like "Caterpillar", she won't say, "Down" to get down. I, for one, am not looking forward to these new restrictions on granting her what she wants. More work for Mae = more work for Mom. Here's hoping she's a quick study, yo.

Thursday, October 31, 2013


Everyday I find more reason to be grateful, more people who deserve my thanks, and further my understanding of the beauty in each person. I always come back to a three groups and one individual who I think have influenced my ability to welcome Mariana without any sadness or wistful fantasies of what might have been.

The first is my parents. Duh. Mom and Dad, thank you. Thank you for having eight kids when everyone thought you were crazy, ignorant, selfish and weird. Thank you for teaching us that babies are always good news. Thank you for letting us know that your love was never gauged by our performance as human beings. Thank you for telling me how the doctor said I would "be less than perfect" and how that made zero difference in your love for me. Thank you for teaching me to trust that God has all this handled, that I don't have to be a perfect parent and that siblings are the best gift any child could have.

To the parents of children with Down syndrome who came before, thank you for taking your babies home instead of leaving them at the hospital. Thank you for letting them grow up in a family that had expectations, patience, love and arguments. Thank you for being the person the school administrators dread seeing. Thank you for insisting your kids could learn, should learn and had the same rights as every child. Thank you for allowing yourself to be labelled "pushy", "entitled", "in denial" and "a pain in the ass" by teachers, principals and school boards. Thank you for withstanding being gossiped about and ignored. Thank you for not accepting a blanket description of you children's abilities, or believing everything about them was disabled. Thank you for understanding that you are the people who know your children best, not the medical journals. Thank you for allowing me to go to high school with your child who loved dogs, dancing, laughing and football. Thank you for instilling in me that kids can be trusted to be kind to your children.

To the school administrators and teachers who came before; Thank you. Thank you for opening up to interesting possibility. Thank you for being curious. Thank you for trusting those parents who insisted things you were taught were impossible, were actually possible. Thank you for being ignorant that "those people can't learn to read", and instead finding out how to teach them anyway. Thank you for believing typical kids needed atypical kids. Thank you for eventually giving in to that "pain in the ass parent", even if it was to get her off your back.

To the baby I wake up to everyday; Thank you. Thank you for not reading the manual. Thank you for being so contrary, for hearing that you can't do something and doing that very thing. Thank you for sleeping through the night early on. Thank you for being so independent. Thank you for wanting to be one of the big kids. Thank you for getting your feelings hurt when you are left out. Thank you for cuddling when you don't want to do your work. Thank you for getting in the toilet. Thank you for unrolling the toilet paper. Thank you for splashing in the dog water. Thank you for needing things done differently. Thank you for inspiring your siblings to work harder, to stand up for what is right, to love someone who isn't as capable as they are. Thank you for teaching your mom and dad to work toward an uncertain future, to hope without insisting on results, that life is good even when it's scary and sad and terrible.

Friday, October 25, 2013

Quick Takes

This is where I live now. Metaphorically speaking, of course.
This week was parent/teacher conferences. I am hit with the irony of my insistence that Mariana be treated just like anyone else, and yet my inclination to outline for each teacher that my kid in her class is a preshus snowflake of uniqueness. Living with the paradox of, "We're more alike than different." and "Everyone has special needs!" is fun and hilarious.
Mae is trying so hard to be a walker. She walks first, and crawls only after several plops. And does she ever plop--right down on her rump. She always looks at me and says, "Ooooo." after. So cute! I really don't appreciate this part of development in any of my kids. I don't know how to answer the question, "Is she walking?" Paul took his first steps at 9 months and was walking by 10.5, but all that in between was confusing. Mae took her first steps months ago, and now she's finally trying to walk, but isn't great at it yet. So, yes, she's walking, but it ain't pretty.
A lady bought my coffee on Tuesday because Mariana was charming. After that I read a post about a woman walking by someone holding her two-year-old daughter with Down syndrome and blurting out, "That baby shouldn't exist!" When the mother said, "Excuse me?" The woman replied that the mother's life would be better if her daughter hadn't been born.

I just cannot imagine this happening to us ever. Sure, the check out lady might ask me if Mae needed surgery, and sure, I really feel strange explaining Mariana's personal health while paying for my groceries, but this kind of stuff is just stunning. I mean, if this happens to us now I know exactly what I would say, but if it was a sneak attack, I'd probably just sputter and maybe scream, "JERKFACE!" or some other mature and helpful statement.

If you do ever witness this kind of garbage, feel free to speak up and tell that particular person that the world would be better off if he/she just stays silent. In a perfect instance it would be an opportunity to educate and perhaps build a little bridge of empathy. People who say such things come from a place of pain. But if there is only one second to respond, remind that lovely person of the old adage about not having anything nice to say.
Lemme circle back to conferences. The kids are pretty set academically. Molly's in that weird 1st grade reading limbo between being technically able to read and actually being fluent enough for chapter books. Luckily, this is my third time being the parent of a first grader, so I'm not anxious.

What is lovely is having teachers who value the most important things about your children, and who pull the best out of them and nurture it. Paul is becoming helpful. Molly is still super cute and charming. Charlotte's bubbly joy is surfacing, and while she'll never win a behavior award, her teacher appreciates that Charlotte is always laughing. Kate is diligent and, when pressed, will stand up for what is right. When the 4th grade boys were using the words, "retard" and "retardation" to make fun of one another, Kate asked her teacher to address it with the class.

Academically I am considering homeschooling Kate. She's got some very specific interests and challenges that I think would be well served in a homeschool setting. But the community at my kids' school is phenomenal, and I can not imagine not being a part of it. Kids are kids and are going to be jerks, be irresponsible and make big and little mistakes. To have a community of teachers that understand kids and invest in their moral formation is so uplifting that I waffle day-to-day on what we will decide for next year.

Last week was terrible. We had a huge communication SNAFU with the geneticists office and didn't get Mae's test results until yesterday when Scott went to the office unannounced. Our doctor is amazing and helpful and in general a great doctor, but because of some wickedly awful communication from the call center he employs, we spent the weekend thinking we were going to be told Mae had leukemia.

Times like this make me wonder how atheists get through. I've heard atheists claim that belief is just a crutch for the weak, but I can't help but wonder why that is such a problem? Jennifer Fulwiler did a webisode on the Explore God campaign where she compared having faith being a crutch the way gravity is a crutch.  This weekend I needed to be in constant communication with God. I needed constant spiritual reassurance that, come what may, we'd be able to get through it. And I needed help to keep me from being a nasty grouch toward my husband and children while my mind was so actively trying to convince me that the worst was coming. Even now, when the tension has been released, I want to retreat and be left alone to recover from all that stress. Scott's at work and there is no school today. So I have to ask again for the grace to not get annoyed that my children want my attention and need my help. I have to push past my desire for quiet and contemplation and lean toward the beautiful life I have here and now. I need help from God to do that. If that makes me weaker than an atheist, so be it.

Mae's thyroid is a tiny bit wonky. It did this last spring, but we focused on nutrition and it righted itself. I hope this will be the case again, but if it isn't I thank God we live in a time and place that gives us medication to help her. In general I tend to shake my fist at the current way of practicing medicine. There are so many doctors who just prescribe medications to cover symptoms rather than finding a cause and then treating accordingly. Many doctors don't even care about educating their patients on wellness and proper care for oneself. I don't often take the time to be grateful that there are medications for those who truly need them. Even if the system is frustrating, we do live in a wonderful time for getting good and proper care.
Don't forget about the Buddy Walk and The mAe Team! Every dollar counts and every walker is welcome!! Join The mAe Team now!
I pity the fool that don't join The mAe Team!

For more Quick Takes, visit Conversion Diary!
Dock Source

Tuesday, October 22, 2013

More Alike than Different - Toddlers Be Crazy Edition

This post is brought to you by More Alike Than Different, a complete figment of my imagination based on some interesting Facebook statuses that highlight how people with Down syndrome and those without are more alike than different; hence the name.

Everybody knows toddlers be crazy. Mariana is no exception. Usually, after everyone has gone to school and Mae has finished up her breakfast and been dressed, I can go about my business for a few minutes before she does some death-defying action that requires my attention. Most of that time on a Tuesday would be spent loading up the diaper bag and the car to get set for therapy. Today I needed to use the bathroom.

Now moms know that when the toddler is the only one in the house you do not shut the door all the way lest that fool-child tries to drown himself in the puddle near the fridge left by the preschooler who needed a drink just as he was supposed to get in the car to go to school. The door was left cracked, which in Toddler World is as good as an engraved invitation to come inspect your business. Sure enough, Mae came bursting in and scooted her cute little self over to me where she proceeded to stand up and attempt to push me off the toilet. From her insistent finger pointing, pigtailed head shaking and forceful babble I surmised she wanted to use the potty. Now, as a firm believer in making hay while the sun shines, I normally would stop the world to take advantage of this little burst of interest in using the facilities. Today, however, I was not so inclined and thus told her sweetly, "Mama's turn."

This, of course, was the same as withholding food and drink, and so was met with the same kind of protest. Sweet Miss hit me and said, "Nooo-nooo!" and once again tried to push me. When that was ineffective, she pulled the hand towel down and grunted a nasty little toddler-expletive. She stared at me with that side-eye look and threw herself onto the ground while telling me off. This, I can only imagine, was an attempt to get me to be so disgusted that she was lying on a bathroom floor that I would jump up in haste and tend to her very urgent needs. Perhaps she has learned something in the public restrooms after all. Unfortunately, while I wouldn't call my bathrooms "sparkling clean", they are nowhere near the scary germfest that public restrooms are, and at least the germs present are all ours.

I proceeded to finish up, which includes closing the lid now that someone in the house thinks the toilet doubles as a terrific water table. Are you surprised that Sass took this personally and grabbed my pant legs and shook them with all her might? I washed my hands, picked up the towel and turned off the light turning my back to leave. At this point she followed me, so I shut the door as a civilized person living with a toddler might. Luckily the cat passed by, which was taken as an invitation to act out another episode of the tele-novella, "Toddler and Cat - A Story of Unrequited Love"

Now well into my fifth experience of parenting a toddler, I can with some certitude say, yep, way more alike than different. Le sigh.

Thursday, October 17, 2013

Real Talk

Down syndrome awareness month has been really neat for me. I've been able to read a ton of stories that share a different perspective but the same thread of joy and fulfillment that our family experiences through loving our sweet Mae. But I haven't read any of, what I like to call, Real Talk. Real Talk is the hard parts, the aches and pains and the endurance that is sometimes required when there seems like no endurance left. I think October needs a little more Real Talk if we want to be honest in our representation of what it is like to raise a child with Down syndrome. My witness is just one, and it's one that is as young as Mae. At 19 months in I am still getting my sea legs on this whole thing. I imagine some seasoned parent will read this post and think, "You haven't got it all figured out, Lady." And I'm counting on it. Brace yourselves, here is some Real Talk.

There have been tears lately. Serious, heart wrenching tears. And sleeplessness. Oh man, both Scott and I are on the ropes with the sleeplessness. First it was the realization that Mae is ready to move forward in her abilities, and she can't. Well, she will, but not like other kids, and only with lots and lots of frustration. This hurts so badly. Watching my baby try so hard to be like the other kids, watching her reject being babied by the other kids, watching her feel left out and frustrated, it's so very hard. When we were talking about her OT eval, her OT mentioned that her social and emotional development is on target with typical development. Which is why I cried. Mariana wants to run, not walk. She wants to swipe the other kid's toy successfully. She wants to feed herself with a fork and spoon without my hand over hers. She wants to climb out of her crib and climb onto the coffee table and run and be chased. If you could see her efforts, you'd see a typical 19 month old trying to control her universe as she understands it. You'd also see how it doesn't work out. So I cried.

This week she had her CBC to check for Leukemia and her thyroid tested. (Still waiting for results.) I found out that the scheduler never entered my appointment into the computer, this after I showed up 3 hours late last month because I put in the wrong time. The geneticist is not exactly the easiest guy to get in to see. I cried the whole way to the office determined not to leave without an order for her blood tests. The receptionist was lovely, sweet and totally apologetic, even though it was my fault this wasn't already done in the first place. We went to get her blood drawn and the thing I thought we wouldn't have to deal with happened; she fought it.

I wrapped Mae in my arms to keep her still and as the phlebotomist stuck her she yelled, "NO! NO! NO! NO!" Her face was red and angry. I made soothing sounds saying, "It's almost over. It's almost over." I was talking to all of us. Scott looked like he'd been sucker punched and I felt like my heart had been stabbed. As usual, once it was over, it was over for Mariana. It stayed with me, though.

Why is it important to know these things? That your child will have to experience pain, that your heart will be tenderized and sore and some days all you will have is tears and sorrow? Because even in these dark days, even with the threat of Leukemia, thyroid problems, sleep apnea, motor and cognitive delays and the slings and arrows of general prejudice, I wouldn't go back to before when there was no Mariana. I may spend a night tossing and turning and my prayers may be interrupted by the dark intruding thoughts of what can happen, but my life, my husband's life, the lives of our other children and family members, are better now. Scott and I remark on it all the time; we'd rather live in fear for her than be happy without her. If you are confused by this paradox, welcome to the club. There is no way I can give you a logical explanation of this.  Real Talk; life is full of tears, heartache, disappointment and fear. But that is never the full story. Not ever.

This morning on our walk, Mae decided she was independent. I stood in front of her and she would push my legs until I took a few steps back. There she would stand stock-still as though making a difficult decision. Then she would rush forward in her little goose-step style, mouth open and panting like a puppy. She would hug my legs and grin up at me in her peculiar, "Look what I just did." way. Then, the process would start all over. A work truck drove down our street, the passenger watching our activity as he passed. It occurred to me that he knew what he was witnessing. A blooming flower in progress, the burgeoning skill of a toddler. In just a moment on his way to work, Mae gave him a gift of beauty just by being. This, a tiny moment in time, makes every tear shed paid in full.

Saturday, October 12, 2013

True Luxury

I asked Scott why he thought so many people seemed to be against safe, accurate and early prenatal testing, and why so many insisted there was no problem with Down syndrome. It occurred to me as I asked this that if I am seemingly the anomaly, perhaps something made me different. So I reflected on this when I could. Why do I see early accurate testing as a hopeful sign? Well, because I wouldn't terminate a pregnancy under any circumstance, and because I believe there may be prenatal opportunities to help a baby with specific nutritional guidelines and possible fetal surgery. Why do I see Down syndrome as problematic and can easily view my child as a blessing? Because I don't see Mae as the sum of her chromosomes. She's so much like her siblings and so very much herself, but Down syndrome is slowing her from doing what she wants. I hate when therapists say things about her personality are very "Down syndrome typical" when in fact, friendliness, a quick temper and stubbornness are family traits she probably would have inherited anyway. I see Mae-Mae for who she is and I see what having Ds does to her, and I'd fix that if I could. Heck, that's what all the therapy is for!

The root reason I have this viewpoint, I think, is because I live in the best community to raise a child with Down syndrome. The surgical team who performed my C-section had enough wisdom to see I was wack-a-doo with drugs and not say anything about it to me, though the anesthesiologist did ask some leading questions that I now realized were an attempt to help me realize the facts. The NICU doctor who did tell us was so perfect, I wish he would get a medal. First, he congratulated us on her birth, then he asked if we understood why she was in the NICU. Then he explained the issues, and lastly he said, "I suspect she has Down syndrome, so I have sent her blood for genetic testing." He did all in his power to keep her at the NICU of the hospital where I delivered until I was almost ready to be discharged, and he promised me there would be no secrets. I have an abiding love and appreciation for this man because of his honest and candid nature.

Our community adores Mariana. She gets free stuff all the time, sometimes without permission from her parents! In fact, I would say rather than devaluing her because she has Down syndrome, she is often valued more than our other children because she has Down syndrome. I myself have to be watchful about over-emphasizing her value and make a concerted effort to pointedly affirm our other children's good qualities lest they imagine she is more special than they are. People here seems to understand to wait patiently for her to respond, and many sign to her as well. There have been some rude comments, but most have been in ignorance, and I hold no grudge against the ignorant who do not remain willfully so. Much of the rudeness we face is when complete strangers ask deeply personal questions at inopportune times, like while I'm paying for my groceries. Not everyone is great at timing, but bad timing is far more favorable than nasty commentary.

The school where our children go has embraced Mariana in a special way even though she will not be able to attend. It's a small school that doesn't have enough space for the currently enrolled students, and they have no special education staff. I expressed my sadness to the principal that Mae wouldn't get to be part of the community I wanted my kids to grow up in, and he readily hosted me in a meeting to discussed ways to be a partner with the Down Syndrome Association of Jacksonville. Each person at that meeting was engaged and interested in what I had to say and genuinely expressed a desire to teach the children at the school another way to witness the dignity in each person.

There are countless stories out there of doctors delivering the diagnosis like they are sentencing parents to a dismal future, and prenatally, encourage them to abort and "try for a healthy one." Many recount the rudeness and ignorance they face daily. Many schools reject children because its "unfair to the normal kids" to make accommodations for a minority. It is no wonder that these fiercely loving parents reject safe and early prenatal testing and see it as a tool for eugenicists. It's no wonder that they claim their children do not need to be cured of Down syndrome. I can't blame any of those loving caregivers for being frustrated that people see their child as a Down syndrome kid rather than a kid who has Down syndrome. It makes little difference to me because it hasn't been used against Mariana. How differently would I feel if it were?

I'm still convicted that Down syndrome is a problem, much in the way that cerebral palsy is a problem. I still separate Mariana from her diagnosis and hope to overcome the problems this little extra genetic material causes her. It is important for me to also recognize that this belief is a luxury afforded to me by living in a generous and caring community. Those who disagree most likely do not have the same wonderful experience as I. It is a tragedy that our community is a rarity, and I pray God has mercy on these people who do not lovingly accept his beautiful children. Caring for them is the one of the sweetest experiences life has to offer.

Thursday, October 10, 2013

The Blessing and Problem of Down Syndrome

October is Down syndrome awareness month. I have had a great month with Mariana, who continues to attempt to walk, fights about using a spoon, talks only when she wants and has begun a fake laugh. There are many developments in her little life, many that are frustrating for her parents (like hitting and scratching) and many that are hopeful little signs of maturity. Boy do I love being this girl's mama.

Caring for Mariana is one of the best experiences of my life. If it were possible, I would cure her of Down syndrome. Human beings are supposed to have 46 chromosomes in each cell. Having 47 is a problem for the individual. It is not a problem for me. I do not fear failure and, like so many, wish this baby away. I fear failure and therefor proceed doggedly forward to help this child overcome the problems her extra chromosome is causing. I experience the joy of being human every day. We humans are different from other species because--among many other reasons--we can discover treatments for Down syndrome. We can conquer the risks associated with Down syndrome. We can offer those with Down syndrome more opportunities to make the most of what they are capable. Just 50 years ago the life expectancy for people like Mae was 25 years, now it is 60+. No other beautiful creature is capable of this kind of progress. I live that truth every day.

The beauty of having Down syndrome is in the conquering of it's risks. These beautiful people are challenged every day by the simplest of tasks, and they continue to accept the challenge and overwhelmingly enjoy their lives. The beauty of caring for these individuals is in conquering ourselves. We who have the blessing of being caregivers become more patient, more intuitive, better problem solvers, more hopeful, more persistent and more understanding. We love more fully because we appreciate all the gifts life gives us through the lessons we learn in caring for those with Down syndrome.

I often come across family members of a person with Down syndrome who will claim that calling Ds a disease is insulting. We shouldn't label. We should love all people for all people are unique. Well, yes, of course. But no. Having an extra chromosome puts these people at risk for leukemia, thyroid malfunctions, heart defects, intestinal defects, cognitive impairments, motor impairments, Alzheimer's disease.. and the list goes on. While caring for our loved ones improves our lives, and while there are blessing for those with this condition, can we really honestly say we wouldn't remove these specific risks if we had the chance? Every time we go for Mae's CBC a pall of sorrow overwhelms my spirit until we get the results. I do not like to think of my child experiencing cancer even though I know we could tackle it. Knowing we could handle anything doesn't mean I'd sign my kids up for anything. 

If I chose the conversation for the month of October it would be this: How can we highlight the absolute beauty and dignity of each person with Down syndrome without giving in to the temptation of claiming Down syndrome itself ought not be treated as a problem within the individual?

Down syndrome is a problem. People with Down syndrome are a blessing. Discuss.

Monday, September 23, 2013

Ponderings of the Week

It has been over a week and a lot has happened, but I can't get the conversations about the ethics of prenatal testing out of my head. Perhaps it's because I disagree with people I respect, or perhaps it's because in the future I hope safe and accurate testing can lead to effective therapies in-utero. It could be the realization that someday we may have another baby and I may be in a place that I would want to be prepared. Then again, I may not. The truth is I don't know how I will feel in the future, but I do know that no adverse diagnosis would lead me to allow the premature taking of my child's life, and that is why I do not object to these tests being developed.

I've rolled over the arguments I have in my head. Would anyone advocate for the removal of early pregnancy testing because most abortions are in the first trimester? Of course not! Sometimes we have habits or take medications that would harm a baby in that critical time. Would we say that Dr. Lejeune was wrong for discovering and making public that Ds is caused by Trisomy 21? Of course not! We who have a specific diagnosis for our children and know those who do not are well aware how important concrete evidence is when pursuing treatment. Countless families see countless doctors trying to get someone to name whatever it is curtailing their child's development. I thank God I have a little piece of paper with Mae's chromosomes all lined up for me to see and to show her doctors. Still, that discovery of Dr. Lejeune's led him to a lifelong battle against those who would exterminate our precious children for their chromosomal count.

I realize that the development of some of these tests are probably meant as an aide for women who would rather end the pregnancy early than later. I wouldn't cry if those people sat bare bottomed on a red ant pile. However, I also realize that my experience with Mae's diagnosis was in the minority. Many parents are scared, overwhelmed, sad and grief-stricken that they did not get a healthy baby. They may have done better to get time to process and not dream of the mythical child they didn't get if they knew in advance. This comes back to giving those parents the facts about having a child with an adverse diagnosis and giving them counseling that will help them not to make a decision out of fear of the unknown.

Which leads me to my second rumination of the week; the destructive force of fear. I'm not talking caution, like not letting your two year old play unsupervised in the cul-de-sac. I'm talking the fear that convinces us that we had better not walk a path that will surely be hard and result in epic failure. I really think some of these people who deem prenatal testing as a moral evil are doing this out of fear because of the drastic number of people who do choose to terminate. These lovely people have been waging this war with the doctors who give the news with condolences and directions to make their "appointment" when they are ready. They are the front-liners who see the world through the lens of the war they fight. Who could blame them? Not I! And yet, as I read one woman's assumption that everyone who asked if she knew before birth was implying she should have known and she should have aborted, I reflected that I never thought like that. Don't get me wrong, people have asked me if I would have had Mae if I had known, so I know that attitude exists. However, when I encounter that question it seems to be more of a question of preparedness. "Did you know before she was born?" almost always was followed with a sympathetic noise or face when I answer I did not. I imagine those people were sad I had to find out on a day that was supposed to be full of joy.*

When I hear about early and accurate testing it fills me with hope. I hope that those who test positive find that with time they have the confidence that they are as ready to be a parent of a special needs child as they were ready to be a parent the first time it happened. That it's okay not to have everything figured out, they are in for an adventure. I hope that brilliant scientists discover ways to heal hearts and organs and give the right cocktail of supplements to the mother so the baby can have a healthy life. Hey, wait, look at that! Information, my friends, can and should be used for good.

What about those who choose to abort a special needs child? It comes down to fear, doesn't it? Well, here is what I would say if I were speaking to a couple thinking of making this choice:

    This is your baby. The reality is, you're not ready for this baby. That's okay. Did you know everything you needed to know about dating when you started out? Did you know everything about marriage to this particular person when you got married? Did you know everything about car and home ownership and every job you've ever held before you had it? No. You did not. And you can research as much as you want, but you will not know everything there is to know about your child until you give yourself the opportunity to be his parents. And you will love him. And you will be scared. You will cry sometimes, but also, you will laugh really hard the way you used to in middle school when you couldn't catch your breath and you wondered if anyone had ever laughed to death.
    At first you will listen to everyone, but one day you catch yourself telling off a therapist or doctor or whatever professional in front of you because that person dared to box in your child. It will set your blood boiling when you hear the term "splinter skill" (because it's a talent, no more or less), and you will refuse to wait until that child is delayed to teach him something new. You'll expect him to have manners and to clean up his messes and you'll send him to his room. And you will become more yourself and you will be surprised how delightful that can be. You will fall in love with your spouse over and over and over. Or  you will terminate and this will be an adventure you never had. Because of fear. Do not be afraid. Be hopeful. You won't regret it.

*Look, yes, it's joyful to have a baby, and no one needs to be treating a baby who arrives with a disability as anything less than joyful, but let's not kid ourselves, a lot of parents feel real sadness when they discover their baby is born with any kind of a condition. They aren't bad parents and people who feel sympathetic aren't jerks. Jerks are people who ask if you would've "kept" the baby if you had known.

Friday, September 6, 2013

Quickly Taking It

This here is a story about how I'm already sick of school. Actually, I love my kids' school because the teachers think my kids are as great as I think they are, but also will laugh at their typical kid antics without changing that affection. What I am sick of is the sickness. Mine are the children who get horrendously ill the first few weeks of school just when I am super excited to get some housework completed without some muddy swamp-thing coming in to show me their newest friend that came under the fence from the woods behind the house. There has been a stomach virus, pink eye and a mystery headache/fever virus already. There have also been lies. One day they will realize you can't fool the girl who had 13 absences and zero fevers in one quarter of her third grade year.
The major issue with the OT seems to have been resolved, though we shall see next week. It was, above all, a miscommunication. Mae is Mae, not Down syndrome as her OT seemed to be expecting. That is not so say that Down syndrome doesn't factor into Mariana's person so much as to say, she's not what you expect. I imagine all people with Down syndrome don't quite fit the books. I said as much to the OT. I explained my predicament, that I know my kid, but I can't go and read all there is on Down syndrome because 90% won't be applicable and I don't have the time to wade through all of that to find the 10% that is. I said that I didn't want to hear about her delays. I get it, we live in that space. It's boring. Mariana may well be delayed (she is), but what has that got to do with what we do next? How does that even factor into her abilities and deficiencies? Truth is, it doesn't. Those stats are useful as far as they get you, but since we don't expect our kid to be anything other than herself, let's raise the bar. Let's find out how much she can do, what makes her unable to meet the goal and use her strengths to strengthen her weaknesses. Once that was out on the table our OT gobbled it up. I have to say, there is something uniquely satisfying about stating your needs and having them embraced. I guess I just needed some of these frustrations to adequately assess our needs and express them clearly. Lesson 4,789: Frustrations in life are better viewed as lessons.

I have a genuine question, but I'm not sure where to pose it. You see, I've been seeing a lot of postings on the Ds and other Trisomy pages about noninvasive prenatal testing. They seem to come down very strongly that it is wrong because it leads to the extermination of a specific segment of the population. My problem is that I don't quite understand this position. I do see how prenatal testing leads to abortions, I'm not disputing that. I just don't understand blaming the testing for the abortions. There are a lot of reasons women choose to terminate in the face of an adverse diagnosis, one of the largest is fear and a presentation by doctors that reinforces this fear. It's very hard to say that information that leads to so many deaths is neutral, but I think it is neutral information. I think this because I would never terminate a pregnancy, but I would pursue accurate noninvasive testing if I thought it would bring me peace and the opportunity to prepare. I also look at early noninvasive testing as potentially being useful should there every be a genetic therapy that can be utilized during pregnancy.

So my question is really along the lines of "What am I missing here?" Many people I respect, including those in the scientific field are very opposed to the development of these tests. I feel as though I am missing something vital to having a well formed opinion on this subject. All of these tests seem safe and accurate. Any direction at all would be greatly appreciated.

One day, I found this on my refrigerator:
After being dismayed that my fourth grader didn't pose this request as a question, I decided it was doable. I have curled her hair twice before school, only to have her walk out of school with poker straight locks. And to think, one day she'll probably share her mother's joy of having half curly/half straight hair.

Football season is now in session, let us all rejoice and be glad! Mostly because The Ohio State is the best team ever, and their little 2 point conversion tactics against Buffalo really ticked off the Michigan fans. A boy I used to babysit (and is my sister's nephew) plays for The Ohio State, and he's a good boy, well okay, young man. It makes it more fun to cheer for the good ol' Buckeyes knowing this kid is wearing the scarlet and gray.

Another sweet joy is that I am friends with some Michigan fans. One is up there in that place, and we were having us a little FB sass. I reminded her that Urban was named after a pope, much like her youngest son who is coming in the next few weeks. She didn't respond, which is all the sweeter.

We are sad about the Georgia loss in this house, but it's not the end of the world. These SEC weirdos are all about the SEC being the toughest conference in the nation, so they expect a loss here and there. Clemson is a tough opponent, unlike, well, Buffalo. Anyway, you can expect the Fryman kids to be doing the O-H-I-O dressed in their Georgia gear. It really rubs the Gators the wrong way, which makes us all happier.
Picture day was today, and I am super excited to see the results. I love picture day, but my lesser nature loves bad school pictures. I feel like it is a rite of passage for a kid to have a terrible school picture. My favorite are the boys in that super-skinny-big-teeth phase and the girls who had their mother's do their hair only to have the Florida humidity choose a different style that is much less flattering. Though I have to admit that with the digital age, I can't wrap my head around these bad takes. Last year Molly's was so terrible I thought she must have asked a heavy photographer if she was pregnant, except she said it was a man who took her photo. Maybe she asked him if he was pregnant. Who knows? I do know I tucked that bad boy right into the file folder that has all of her school photos, and if she's a rotten teenager I might even use it against her.
The mosquitoes are back. God save us all.
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Thursday, September 5, 2013

18 Months

I have erased this post several times already, even though -not to brag- it included some pretty awesome writing. There just isn't a word or phrase that catches it just right. It's all wrong. If you want to know it, you kind of have to live it. The fact is that all the ways we've grown are ways I could have experienced with all of the people in my life. I have tons of opportunities to be more patient, have less misplaced compassion, more ordered compassion and increase my tenderness and discipline. But the truth is that Mae having Down syndrome makes me look at that truth and respond to it every day throughout the day. Because of this child I can become what God has been asking me to be all this time.
It started here:
 About 6 months ago, this happened:

And then it all hit the fan:

Here's to many more days of turning the world as we know it on its head. I love you Mariana, and so should everyone else.

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:

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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....