Saturday, May 31, 2014

Happy Birthday TToT!!!

This weekend we are celebrating the TToT's one year birthday, and especially, its fearless founder, Lizzi of Considerings! She may dodge the compliment she deserves by saying we all make up the community (and that statement has merit--every participant is valuable), but she gets credit for starting the "best hop on the Interwebs." Yay, yay, Lizzi! We all contribute now, but thank you for bringing us together!

So, that's my #1 and #2.

Remember how I wished aloud for a wagon in which to haul my kidlets to and from the park? I put a notice out on our listserv and had one within 24 hours. It needed a good hosing, but then it was ready to go. I had Christine and her mommy exercises in mind as I planted my feet firmly and absorbed the force of the wagon as we headed downhill and as I dragged my heavy load back up.

Believe it or not, I am thankful for dandelions. My kids have not yet learned the disdain with which most of the world views these flowers, and since they are plentiful, I receive several on every outdoor adventure with the request (from Maggie) to put them in my hair or in a vase if we are on our way home. (Thanks to my mama for foreseeing my need for tiny vases years ago.) And Leo is really making more of an effort to communicate (other than impatient screams) and says /f/ every time he gives me a flower. Sweet boy.
Sweet, even if they don't last.

What's on my mind more than anything else this weekend is Maggie's Annual Review on Monday, in which we will decide her placement for next school year. We've bitten the bullet to hired a prominent psychologist familiar with Maggie's profile to attend with us and interpret her neuropsychological evaluation and why she is, as he puts it, "a complex case." He'll also help us advocate for academic goals to be added her IEP. Brian and I spent an hour and a half on the phone with him this week, and afterwards, I felt marginally more optimistic about options and wholly assured that the money we will pay for her attendance will be well spent. He's well-known and respected in the community and has boatloads of experience with these meetings. Plus, he's not at all combative and believes (as we do) that establishing a positive relationship between the school and family will yield the best results.

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Saturday, May 24, 2014

TToT27: Spring!

I love fall the most of all, but right around this time of year, I wonder if Spring is slightly better.

1. I first learned about peonies when we lived in Asheville and bought a house with a yard full of prolific peony plants. I was heartbroken to leave them behind so I surreptitiously dug up some of the plants and carried them north with me. They didn't have much to say for themselves last spring since they'd lived in a cardboard box full of peat moss most of the winter, and then I went and transplanted some of them again this year (which I think stressed them out all over again), but the ones who are enjoying their second spring in their new homes are rewarding me with lovely blooms. How can you not love a peony? (In rural areas of WNC, people call them pe-OH-nies. Funny, huh?)

2. Ramps are another thing I grew to love in WNC. I think of them as so Appalachian, I didn't think I'd ever find them here. But lo and behold, someone hunts them up and sells them at our neighborhood farmer's market! Turns out little Maggie likes them, too. Such a strong taste for a five year old to enjoy!

3. Time for my annual rhubarb pie! The Dude doesn't care for pie, or for rhubarb, for that matter. Fortunately, we are having dinner guests this week so I can get them to eat some of it, and I won't be forced to eat the entire thing myself.


4. Speaking of, aside of the obvious reason of knowing correct proportions, these notes are so lovely
to read from time to time. I remember the occasion, and I remember the dear friends. And I don't have to guess how much sugar.


5. This is the perfect season for park play. I'm not shivering or sweating. The sky is blue, the grass is green, and I don't resist the idea. We just go. But you know what I want? One of those wagons so I can pull the kids along. It's like herding cats when we're all on foot.

6. A family down the street decided to give away their outdoor table and chairs set. The table has a bit of green paint on it, but otherwise, the whole thing is in very nice condition. We did look hilarious carrying a table down the street together, Brian in his suit and me on my bare feet. But here's what I know about our neighborhood listserv: people are willing to give away valuable items so they don't have to cart them away themselves, but you must act fast. Neighborhood mooch, that's me.

7. Speaking of bare feet, it's now seasonal! Not that I didn't still walk outside with bare feet in the winter (the the amazement of the parents at schoolbus pick-up), but now I'm not in danger of frostbite. Shoes are cute, but I'd rather go without.

8. We got two high school graduation announcements in the mail this week. Such fun! One from a former student of The Dude's and one from the daughter of a childhood friend. Hard to believe either is graduating but so flattering to be remembered.

9. Our neighbors across the street are starting up their outdoor movie projections again. And Maggie is taking a nap so she can stay up and watch Night at the Museum.

10. And now I will dance. Watch out, Seven Guard Virgins! Watch me go!

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Thursday, May 22, 2014

What Are Your Special Needs?

The following post was inspired by Kristi's Our Land recent post (Do All Kids Have Special Needs?) and the pictures I took after reading her Facebook request.


There was a gathering at our local park last weekend for families with children attending Kindergarten next year. It was a lovely day, and I got to sign up for the PTA and all that. But I was nervous. Would my daughter interact with the other children? Would her delays stand out so much that she would not be able to keep up? Would she be found out as a special needs, hindering her social chances from the get-go?

Let me be clear, I'm not ashamed of my daughter's special needs, and I don't try to hide the fact that she has them. But neither do I want to introduce her as "my daughter with special needs." She is so much more, and there is a stigma to the special needs label. I know this because I have awarded too freely (before I had a child with special needs) and then because of this conversation that occurred soon after we arrived.

Parent One: How many Kindergarten classrooms are there?
Me: Seven, I believe.
Parent Two: Actually, six. And then there's a special needs classroom.

There's a prejudice, and as a perceived member of the Parents of Typically Developing Children Clan, I was allowed to hear it. And you now what? I walked away. At the time I could only think of how I might be labelling my own child in the eyes of this woman with a narrow view of children with special needs. I don't feel any anger towards her. It never occurred to her that one of the parents she was talking to had a child with special needs, that special needs can hit as close to home as our neighborhood park. With hindsight (the wonderful clarity of hindsight), I can think of numerous polite, confident responses to her statement that would cause her to think twice about exclusionary statements in the future. And I can also realize that speaking up and using my personal experience would have probably have made a lasting impression. So, next time...

It turns out Maggie did find a little buddy. The buddy was more invested in the relationship than she was, and I fulfilled most of Maggie's side, but Maggie kept up, albeit slowly and with some assistance, with everything the other little girl did. She climbed and slid and and bounced on the swinging bridge (holding on). When the other little girl made a comment about Maggie taking longer than she did to climb the chain ladder, I simply commented that some activities are harder for some people than others. While the chain ladder might be difficult for Maggie and easy for the other little girl, there are other tasks that are challenging for the other little girl and easy for Maggie.

It was an easy, smooth exchange, and that's what I really wanted to say anyway. That will probably turn into my public school mantra.

With that and Kristi's post in mind, I'm publishing the photos I sent to her. Three of us came up with our own challenges (and I chose Leo's). Some tasks come easy to each of us, and some tasks are hard.








Thursday, May 15, 2014

TToT26: Cloud of Witnesses

I'm totally cheating and reposting my FTSF post. The truth is, it's what I'm thankful for this week, and I haven't quite cleared my brain of it and gotten ready for a whole 'nother set of thankfuls. Plus, my cloud of witnesses includes well more than ten so I think it counts.

BUT, three Things of Worthwhile:
1. The Dude is really great at finding complete wastes of our time online (Spurious Correlations).
2. We have a sense of humor that delights in the absurd (Duck Song, Parts 1, 2, and 3--especially fun if you know the joke about the duck who walks into a bar and asks for grapes).
3. We have an appreciation for completely useless talents (Emma Stone kicks Jimmy Fallon's a$% at lip-synching).

So, without further eloquence (without further eloquence)...

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I know people who can recite off hundreds of (maybe a thousand?) Bible verses. I cannot. Like many people, regardless of religious preference, I know John 3:16, and thanks to Mr. Brazil, my middle school Algebra teacher, I will never, ever forget Proverbs 13:15, "...the way of the transgressor is hard." (He worked that in almost every day.)

One summer during my teen years I attended church camp, and I learned a (what I just now realized when looking up the book, chapter and verse) paraphrased version of Hebrews 12:1-2.
 Therefore, since we are surrounded by so great a cloud of witnesses, let us run the race before us, looking to Jesus, the pioneer and perfecter of our faith.
We had motions to go with it (file that under the effectiveness of kinesthetic teaching modalities because church camp was 20 years ago, at least). I'm not usually one to name favorites or bests, but this has to be a top passage. Whether or not Jesus is the pioneer and perfecter of your faith, you cannot disregard the beauty of those words. Pioneer and perfecter. Wonderful.

But what really made those words stick in my mind these twenty-some years is the cloud of witnesses. Have you ever walked through a cloud of gnats? I always thought of it like that, but pleasant. A sort of hovering presence created by all the people who loved you and taught you and modeled for you the right way to live. A remembrance of their example and an ever-present feeling of their love and support.

It's probably safe to say most people would name family members among their cloud of witnesses. And I feel the same. I am fortunate enough to not only name my parents and siblings but my grandparents, aunts, uncles, and cousins, along with several other 'great' relatives (now long gone) as people who had a decided presence in my early years. I grew up in regular contact with a very large extended family on both sides. I grew up knowing the peace and comfort of being loved and accepted simply because I was born.

When I was growing up, I always knew my family was the best family. No one else's compared. No other family was as clever, quick-witted, and funny. No one else's family was as intelligent and resourceful, as evidenced by so many notable and high profile successes. And no one else's family truly honored each member and enjoyed each other's company like my family.

And then I grew up. And I realized that my family has flaws, and that other people have wonderful families, too. Not as wonderful as my family, true, but wonderful in ways my family is not. For instance, my family is proud and competitive and tolerates teasing to a meaner level than I can appreciate.

Time went by, and I got married and had a baby. A baby who has turned into a wonderful little girl who thinks, talks, and moves slowly, for whom school will probably always be hard, and whose successes do not and will not look the same as the traditional successes modeled by my parents, my aunts and uncles, my siblings and cousins, and all. of. their. children.

And I found comfort in distance. I grieved over the distance and my inability to participate in family functions, but I felt safer in one regard. I could protect my daughter from negative comparisons or from feeling left out. And I could protect myself from seeing the differences between her and her cousins. I could protect myself from feeling I didn't belong because the child I produced doesn't fit the traditional model of success demonstrated so well by my family.

I wrote a blog post on May 9 titled The Hardest Part. It's about the stressfulness of decision-making for your children. A few days later, I got an email from a family member offering a gift that I never expected and could not immediately comprehend. And in it, I remembered the essential lesson modeled by my cloud of witnesses: you are loved and accepted because you were born.

You do not need to perform. You do not need to think and look and act the same. You are loved and accepted and treasured because you were born. So great is my cloud of witnesses.


This has been a Finish the Sentence Friday post for the prompt, The nicest thing someone ever did for me was... 

Join in with Janine, Kate, Kristi and Stephanie.




Saturday, May 10, 2014

TToT25: And now that TToT25 badge makes sense

In an effort towards balance, I am going to pen (metaphorically) a light and cheerful, non-themed list this week. (Have you even noticed that I like a theme?)

1. My Monday was not like Christine's. Geez. We should all be grateful.

2. I don't like cleaning floors. Aside from vacuuming, I avoid the task. But our bathrooms and kitchen floors were getting pretty disgusting. I bit the bullet, stamped down my gag reflex, and scrubbed. They now shine. Six months until the next go! (Just kidding.)

3. Irises! I forgot I even planted them!

4. Whew! We are not liable for the charges made by the employee who used our credit card after the Dude left it at a bar. Seriously, who spends that much money at guess.com?

5. The carousel and train at our local park are open! Need I say more?

6. Kindergarten orientation was not a bad experience. Maggie even had something positive to say about it.

7. It amuses me no end that I have been pegged as a high maintenance parent. While waiting in line to fill out my forms, the principal beckoned me over to assure me they would take good care of Maggie at the school. And then the special education coordinator sat and talked with me while we waited for my conference with the nurse (to build rapport, I imagine). After years of pegging the high maintenance parents myself and then holding their hands, I find this amusing. And, I admit, I'm pleased to know that they consider me a parent that needs a little extra attention. Makes Maggie just a little less likely to slip through the cracks.

8. Also, I think I've corrected my relationship with the office manager. She was highly annoyed that I called to schedule Maggie's Kindergarten orientation late (not my fault), but I behaved in the manner that I have found helpful to behave with office managers: I was sweet and syrupy and treated her with the deference I imagine she thinks she deserves. For those who have never worked in an elementary school, know this: the office manager is a very powerful person in the hierarchy of an elementary school. You want her to like you and your child. If you're a teacher at the school, you need her to like you.

9. How could I forget until #9? I met Kristi last weekend! And she bought me drinks.

10. I'd rank that photo of me at 8.5/10. I am not photogenic so a good photo is cause for rejoicing.

And, before I forget once again--at Lizzi's request, three things of worthwhile:
1. I know how schools work on the inside.
2. I'm not scared to advocate. Or, rather, I am. But I still will.
3. The Dude's even better at these first two than I am. And he's on my team.

Link it up!

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Friday, May 9, 2014

The Hardest Part

My heart has been heavy this week. At times I have felt like I am carrying a stone around in my chest. When emotions are really centered in the brain why do we feel them in our hearts?

Anyone who reads my blog knows I have a daughter with special needs. I am in a constant state of indecision as to how much to share publicly regarding her needs. We don't have a specific diagnosis for which to advocate. And while I know from experience that sharing an emotional experience publicly can be cathartic, I cannot get past the idea that it is a violation of her privacy.

So, without sharing details, I will say this. We have done some extensive testing, and the message I received most clearly from the report is that school is not a happy place for Maggie. It is an overwhelming place, a stressful place, and a challenging place. Her only option at times is to retreat to her books or her daydreams. And every day, she departs on the bus without so much as a whimper. She knows she has to go to school, and she doesn't complain.

I don't know how to make it better. I don't know which Kindergarten placement would be the better one. I don't know if we should give up on public school and try homeschooling (an option I dread but will not entirely dismiss) or private school (when $40,000 drops from the sky into our laps).

I wish I could be more optimistic, but I've worked in schools, and I know how hard it is to meet some students' needs. I am 100% convinced that the teachers she works with now are caring individuals who work hard on her behalf, and I believe we are likely to encounter the same at her next school. But no matter how well-trained and well-meaning the employees are, they have limited resources and a whole lot of kids to serve.

So June 2 looms on the horizon as we sit between the school system hinting for one placement and the psychologist strongly advocating for the other, between the neurologist suggesting one course of action and the psychologist the other. And us in between knowing whatever decision we
make will have tremendous ramifications. It's our call.

What no one told me about parenting is how hard the decisions are. No one can predict which path will screw your kid and which is the road to improvement.

Saturday, May 3, 2014

TToT24: A Village

I took my kids to a new pediatrician this week. We loved our old one, but she moved to Boston and left us hung out to dry (the nerve). I wasn't interested in the other pediatrician in her practice, but I got a recommendation from one of Leo's little friend's mother with a warning that they like the doctor, but he's a little odd.

After meeting with him, I wouldn't say odd so much as abrupt. He's a fast talker, and he both expects and prompts parents to use as few words as possible. "It's a yes or no question;" "Name one other food, just the name of the food, he has eaten in the last six months;" "All I need to know is whether you contacted the teachers or the teachers contacted you about the fatigue." Yes, those are direct quotes from the doctor this visit (succintness (succintity?) is not my strength). But I think I like him.

I can fairly say I've seen at least forty children's health care and child development professionals since giving birth for the first time in March 2009. Besides not having to deal with the indignity of filling out the Ages & Stages Questionnaire before every appointment (an exercise in defeat for the mother of a child with developmental delays), I need to a connection with the person, a sense that this person really cares. And in spite of cutting me off and redirecting me multiple times, I actually felt this from Dr. Ben. I know. Let me explain.

I like the informality of Dr. Ben. He sat on the floor with my children and let Leo climbed all over him. He let Maggie try on his stethoscope. Maggie, who tearfully told me the night before, "But I don't like boy doctors," seemed perfectly at ease. He described the goal of his practice to be one that provides holistic health care, not just treatment for the flu and strep. He listened carefully to my biggest concerns today. And he prompted me to ask him about his practice.

At the end of the appointment he said, "I know we have not had the chance to talk in detail. What I like to do with the parents of new patients is schedule an additional appointment at the end of  day so we can talk up to an hour, if needed. I would like both you and your husband to be there." In addition to that, I told him I would have Maggie's pending neuropsychological evaluation sent to his office, and he stopped me to say, "You know, it would be better for you to bring a hard copy. Hand it to the the person at the front desk and tell them, 'Don't put this in the computer; put it in Dr. Ben's hands.' Repeat that. Tell them to put it in Dr. Ben's hands." So, unlike our pediatrician in Asheville, whose mind I had to refresh at every appointment as to Maggie's specific diagnosis, I know this man will read her report. And then he wants to sit and discuss it with Brian and me for up to an hour. Bossy he may be, but he seems invested in his patients and their families.

After this experience and after reading Kristi's FTSF post in which she praised Tucker's teachers, I've been thinking about the bond parents of children with special needs develop with some of their service providers. These people, the doctors, counselors, therapists, tutors, and teachers inevitably interact with the family of a child with special needs at such a deep and personal level, where the family is most vulnerable, in fact. Because of that, I think, the bond needs to be something more than a distant professional one. For me, I need these people to feel like friends, or at least, warm professionals. So in addition to meeting a pediatrician who might be one of those people who really cares, I am thankful...

2. For all the teachers and therapists who have both loved and taught my daughter.

3. For the ones who stayed long to listen to me cry.

4. For the ones who gave me their cell numbers.

5. For the ones who stay in touch via email.

6. For the ones who tinkered with the schedule to make it work for us.

7. For the ones who looked at her as a whole person.

8. For the ones who looked at us as a whole family.

9. For the ones who were willing to say what was hard to say.

10. For the ones who gave more than their jobs demanded.


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