Enough, already!

Today I changed the name of my blog. Twice. I'm not sure if Blogger can keep up with me. The truth is I was trying to be something that I'm not. Well, I am, but not all the time.

Confused? Me, too! So, after trying on several new names, I've settled on "Imperfectly Possible" because it seems to fit.

Danielle has been in kindergarten for less than two weeks and I have already run face first into the new breed of ultra competitive parents. Parents whose five year old children are shuttled from school to ballet to violin lessons and then soccer practice. Kids' whose schedules are too busy for play. When did kids start needing day timers?

A childhood friend and I are both  "older mothers" - meaning we had a child in our 40s. We periodically commiserate on how things have changed since our childhood way back in the black and white 1960s. If you listen to us reminisce we really were a watered down version of Brady Bunch meets Family Affair.

Some things were better back then. As kids we could play outside at night without adult supervision. In the summer we were allowed to ride our bikes miles to the nearby pond to swim . We weren't assigned homework until the fourth grade - and then our parents expected it to be our responsibility, not theirs. On the other hand, my parents took "driving beers" in the car with them on road trips and popped "tranks" (tranquilizers like Valium) before family visits.  I'm sure it was easier to adopt a laissez fair attitude toward parenting while heavily medicated. Maybe the good old days weren't so perfect either.

However, there was less emphasis on children being perfect. There were kids in our neighborhood who got Cs and kids who got As. Kids who took shop and kids who went to college. As a child I didn't spend every minute at school or doing homework. I didn't have to go to Kumon or Mathnasium for extra help. Instead, after school we played outside or (heaven forbid!) watched TV.

I am so tired of the pressure we put on kids to be perfect these days. I was truly P-O'ed the other day when my 5 year old's kindergarten teacher sent home a snarky note about her inability to read. It said "Other children have already mastered this list and have moved on to the..." more advanced reading words. She'd been in kindergarten all of SEVEN DAYS when this nasty little note arrived home in her backpack.

I'm sorry. When I was in kindergarten we played outside and learned the ABCs. I wasn't expected to arrive knowing how to READ. The note then went on to say "It is imperative that...practice learning these words on a daily basis since she will be frequently tested. I suggest making flashcards to help drill the words."

My question is, if I'm responsible for teaching my child to read, what is the teacher doing with her day - filing her nails? If my child is going to be tested "frequently" I expect the teacher to TEACH her what she needs to know. Instead it appears that teachers have now become TESTERS. Their primary purpose is to inform you  and your child of how deficient you are. No wonder kids have to go to these tutoring programs - the teachers have abdicated their responsibility for actually helping children learn.

So instead of my child going to school to learn she is going to school to be "frequently tested." Teachers have lost track of their true purpose. Instead they have become drill sergeants and disciplinarians, focused on tests results rather than real learning. I am sad that my child won't be allowed to make mistakes and learn from them in an uncritical environment. I am sad that she is discouraged about school after less than two weeks because her teachers have already written her off. I wonder about how this pressure and need for perfection is going to impact this generation.

I am not perfect. I don't expect my five year old to be perfect either.
 

How to Write Instructions for your Home Health Aide

Home Health Aide Daily Care Plan & Instructions

When we first had a home health aide for my daughter the job seemed obvious to me. Not so to the various care workers who were assigned to her. Truthfully a home health care aide or companion typically has very little to do. A live-in aide can retire to his/her room and read or watch TV until you need their help. A part-time aide is in an awkward position because there isn't much to fill the time. I don't mind if the aides read, text or use their laptops - provided they meet my daughter's basic needs in a timely manner.

Do your homework when you hire an aide. It turns out that most people will only do exactly what is asked of them - no more, no less. For instance, with an elderly parent if you ask the caregiver to make a pot of coffee it is very possible that they will only make coffee on the day that you make that request. If your parent wants a pot of coffee made every morning with breakfast that needs to be specified. You need to prepare your home when you have someone working in it so they can find the things they need.

Review the instructions on equipment and procedures. Make sure that the aide has the written instructions available for any unique equipment like a lift. WATCH them perform complex tasks at least once to make sure that they are being thorough and safe. Don't trust that "showering" means the same thing to everyone. Some people may spray your family member down quickly, others may sit them in the shower and walk away for 10 minutes. Be specific about your expectations.

Review and provide instructions for all medications that the patient requires. Don't forget non-routine medications. For instance, if the person has an Epi Pen make sure the aide knows where it is and how to use it.

If you expect the person to prepare meals or snacks, make sure that they know where the ingredients are as well as what food preferences or allergies the person may have. When in doubt, provide a printed recipe including the location of all ingredients. Decide if the person will be eating with your family member and provide adequate quantities of food (obviously live-ins expect meals).

While it seemed ridiculous at first, I learned to provide a detailed list of each task that I wanted done every day.  Each task is described including the timing (after school, at dinner),  tools to be used (special cup, broom, etc.)  and the frequency (daily, weekly, etc.). I also include check boxes so the person can keep track of what has been completed each day.

The last section of my daily list includes safety instructions. Make sure that you have your address written down in the event of an emergency. You'd be amazed at how many people simply follow their GPS and have no idea where they are. If you are not going to be there at all times include your contact information on this page as well.

Here is an example of a daily care plan for a 4-hour after school shift for our daughter. Your plan may be more detailed depending on medical needs and the extent of home care tasks you expect.


Daily Home Care Plan for __________________      Date:  _____________

Tasks include, but are not limited to:

Personal Care

         Meet & get her off school bus using wheelchair

         Change clothing if wet or dirty immediately after school

         Toilet or/change Depends every 2 hours   

o   Completed  at     time _____________       time _____________   

o    Check  Depends immediately after school. Change after shower & before bed

o   Thrown wet/dirty Depend in kitchen trash can

         Provide afternoon snack (prepared in frig) Complete at time _____________   

         Assist with ambulation around house (maintain contact guard at all times)

         Assist with TV remote, computer, etc.

         Shower daily    Completed at time _____________   

         Brush hair daily after shower

         Wash hair on Wednesdays   Completed date _____________   

         Assist with feeding during meals & snacks

o   Cut food into bite sized pieces for finger feeding

o   Assist with use of spoon or fork (may need to feed her)

o   Place dirty dishes, cups and utensils in the sink

         Provide companionship & supervision at all times

     Maintain safe environment while parents are away or otherwise occupied.

Home Care

         Make bed daily    Completed at time _____________   

         Fold & put away laundry as needed (2-3 times a week)

         Dust & vacuum bedroom on Mondays (weekly)  Date _____________   

o   Use Swiffer dusters and Shark carpet sweeper

         Clean bathroom on Fridays (weekly)    Date _____________   

o   Use disinfecting wipes to wipe down toilet & bathtub

o   Lift no slip mat and place on shower chair to air dry

Safety    I can be reached at 555-555-1234

Never allow her to walk around the house alone – be with her at all times.

Watch for choking while eating and drinking.

In the event of a clonic/tonic seizure (grand mal):

1.    Ensure her safety - roll her to her side, if possible

2.    Call 911 The address here is 123 Main Street Anywhere,ST

3.    Administer medication per instructions on label (outer pocket of blue backpack)

For insights on the aide's perspective please go to http://newoldage.blogs.nytimes.com/2009/01/21/advice-from-a-home-health-aide/

Different Dreams

 

Parenting a Child with Special Needs

This seems somewhat unfinished to me. Maybe it's because I wrote I wrote it when Amanda was only 6 years old...

My life is dramatically different than I ever imagined it would be. I suppose that’s true for a great many people. Only people with clear vision and great drive end up pursuing their dreams.

 I’m not sure I ever had a dream. Or if I did I was only aware of it that way you are when you are first awake and your dreams are half-remembered. As soon as you try to articulate them they slip away.

When I was younger I wanted to be many things. Some of them realistic, some not. I wanted to be a writer, a poet, an actor, a lawyer, a mother… I left the idea of law school behind when I foolishly entered an MBA program in my early twenties. I was probably the least mathematically inclined student to ever be enrolled in business school.

Still, I intrepidly entered the business world armed with the softest business discipline I could find – human resources. Fortunately for me, I landed in a position that focused on developing employee training programs. A good fit for some one who enjoyed research, writing and lots of attention. I spent several years as a corporate trainer, occasionally flying around the country to conduct multi-day seminars. I liked it. I was good at it. I had a job with flexibility, good pay - where people often clapped for me at the end of the day.

In the summer of 1998 I was six months pregnant and planning on a maternity leave of 9 months. Then the unimaginable happened. I went to a routine prenatal exam and my first ultrasound. Everything was fine. However, when I got home there was a message on my answering machine from the doctor I had just left with six scary words, “we need to see you again.”

As it turned out, after reviewing my ultrasound the doctor spotted what appeared to be a cardiac abnormality. My husband had a business trip and flew off the morning of my level two ultrasound appointment. Neither of us expected them to find anything more serious than a heart murmur. Still, in the back of my mind I knew my mother had lost her first baby to a congenital heart defect.

The memory of that appointment still has a nightmarish quality to it. At first things seemed to be going well. The attendant asked if I had brought a videotape so I could see the baby at home. I hadn’t. I figured that was good news. No one would want to send me home with a video of a horribly disfigured baby.

The doctor looked at the ultrasound and mumbled to himself a little. Then he left the room. I tried to determine what I was looking at on the screen. It was a fuzzy black and white picture, worse than the picture on the TV I grew up with in the 70s. I could roughly make out the ribs and things moving. The doctor came back with another doctor. Then they both left. Now I was getting scared. They came back with a third doctor. "What could be so awful that my unborn baby needs three doctors?" I worried to myself.

All three doctors left and the first one came back alone. He sat down on the edge of the gurney and reached for my hand. "Oh shit," I thought, "this is going to be really bad". He calmly explained that it looked like the blood was flowing backwards through part of my baby’s heart. After consulting with his colleagues they felt our child had only three chambers to her heart instead of the usual four. This meant all sorts of bad things that I couldn’t process. All that stuck in my head was the phrase “cardiac defects are rarely in isolation” meaning that my baby could have a bigger problem than missing part of her heart.

They wheeled me down the corridor and announced that they needed to do an amniocentesis. I didn’t think of the potential complications, oddly all I thought of was that I was in a HMO and I hadn’t gotten authorization for an amnio. I grabbed the side of the door frame and made them call my insurance company for an approval before I let them take me in. I remember jumping off the gurney in maternity pants and a sports bra, threatening to use the phone in the lobby unless some one called the insurance company RIGHT AWAY. I guess I thought it would be an expensive procedure. More likely, it was my subconscious way of trying to avoid it all together.

As it turned out the amniocentesis was normal. Only later did I learn that amnios test for only a fraction of the existing genetic disorders. I spent the remainder of my pregnancy worried about my baby’s heart, but feeling confident that over all she would be fine. I stopped working because the doctors were concerned I would go into labor out of state and wouldn’t have the necessary medical facilities for the baby close by.

There’s no need to go into the labor or delivery. Just trust me when I say they weren’t normal. With a life flight crew standing by to wing my newborn away the minute she showed complications the delivery room was more like a stage – with a dozen doctors and nurses standing by.

Amazingly Amanda didn’t need immediate heart surgery. As it turned out although her heart isn’t structured just like ours (parts that should go around apparently go through it instead) it works. Feeling grateful that we had dodged not a bullet but a cannonball we were took her home with us after only five days in the Neonatal Intensive Care Unit.

As first time parents, a thousand miles from our families, we had no idea there was anything still “wrong” with her until she was six months old. While she was rolling from side to side she had difficulty raising her head from the floor while lying on her tummy and she couldn’t sit unsupported. If we sat her up she just sort of melted into a prone position. We bolstered her in her car seat and her high chair with old towels and cloth diapers.

After complaining to the pediatrician that Amanda’s head seemed unusually flat on one side she sent us to a pediatric neurosurgeon. To say the man was an unfeeling jerk would be a compliment. To this day he was the most insensitive doctor or specialist we’ve seen. He looked at her, announced that she had Down’s syndrome and would “always be funny looking” so he didn’t feel it was appropriate to prescribe a corrective helmet for her. Our beautiful baby – funny looking? I don’t think the man will ever know how close he came to being decked by my 6’4” husband that day. The only positive thing to come out of that appointment was that I was able to persuade our regular pediatrician that Amanda needed physical therapy for tortocullis.

Little did I realize the treadmill I stepped on that day! We’ve spent the last 13 years in and out of various therapies, most with little or no impact. She’s had physical therapy for gross motor skills like sitting and walking, occupational therapy for fine motor skills, speech therapy, feeding therapy, aqua therapy, music therapy and hippotherapy (therapy on horseback). I freely admit that I tried some of these simply because I was frustrated with conventional therapy and thought that if the poor child had to spend seven hours a week with specialists at least some of that time should be fun.

Hippotherapy

Fun is hard to come by for some of us. Many of our kids can’t run and play the way other children do. Others don’t even understand the concept of play as we typically mean it. Holidays can bring as much pain as they do joy. Surrounded by the typical members of your family and their typical offspring, the stress can be almost unbearable. Physically impaired children may not be able to open their gifts without assistance. Cognitively challenged children may find the wrapping paper the most interesting part of any gift for years. Emotionally challenged children may just find the difference of a holiday too much to bear and close in on themselves.

Relatives don’t understand why tactile defensive little Suzie doesn’t love her fluffy new teddy bear or why Bobby has gone off in the corner to play Game Boy by himself. The children are stressed, the relatives are confused and the parents are in the middle trying to soothe everybody’s feelings.

It’s hard to explain to some one who has never raised a child with special needs what this life is like. While all children with special needs are different, as families we share many of the same experiences. All of us have known the disappointment of shattered dreams, learning to live outside of the norm and still try to function like a normal family. The cycle of doctors, therapists and specialists is exhausting for everyone involved. There is a financial burden and an emotional burden. There are days when you see a spark in your child that lets you hope they will some day be able to blend into the mainstream despite this difficult beginning. There are other days when you wonder if anything you’ve said or done has made a difference.

Aqua Therapy

You constantly have to recreate hope. Some of us do it by switching doctors or therapists or types of therapy. Some of us try alternative medicines, special diets or novel therapies. You constantly feel like you have to do more, do better and then maybe your child will be all right.

Sometimes you just quit. You take a week, a month or even a year off. You try to live like other people who don’t have a therapy appointment every day after school and two on Saturdays. Then something happens and you wake up, re-shoulder your burden and move on.

I’ve used the word burden several times and I don’t regret it. But children with special needs are often the source of unexpected joy as well. Who knows better the miracle of a first step than the parents who have waited five years for it? When your autistic child suddenly makes eye contact and you KNOW he loves you the world stops for a few seconds and tears run down your cheeks. By having so many of the normal joys of raising a child taken away from us we learn to appreciate moments that other parents may overlook. We've learned to dream differently.

Christmas Carols and Lullabies

"Sing me to sleep,"my little one asked as I tucked her into bed tonight.

Now, anyone who has heard me sing probably wonders how even a child could ask this. The most charitable thing that can be said for my singing is that I know all of the words. I am so terribly tone deaf that when I was young the kind-hearted director of the church choir suggested that I would be an asset to the bell choir. Translation: "keep your mouth shut." I tried to join the choir in school. I was given a special role - dancer. Again, "keep your mouth shut."

So, beyond drunkenly belting out the words to any song played in a dance club in the 1980s my singing career has been somewhat limited.  In fact, when my oldest was born I realized that I didn't know any songs - except Billy Idol's White Wedding. "There is nothing fair in this world; There is nothing sure in this world; There is nothing pure in this world...." Not exactly a lullaby.

Instead, I sang my little late November baby to sleep with Jingle Bells. When Amanda was little I would put on a Christmas CD and rock her to sleep. By the time Danielle arrived eight years later I'd learned a huge library of Christmas Carols ranging from Holly Jolly Christmas to Do You Hear What I Hear? My favorites being all of the Nat "King" Cole classics and anything from Rudolph the Red Nosed Reindeer.

So, tonight, in mid-December, I was happy to oblige Danielle with a lullaby. As she drifted off to my tunelessly humming Jingle Bells, she sighed and said,"oh, my baby song..."

Christmas letters, blogs and other nuisances...

The BLOG has now become the dreaded Christmas letter - without the cost of postage and with the happy option of ignoring it without adding to your local landfill. I never like those chatty letters about everyone else's perfect life - with photos their immaculately groomed children grinning almost insanely, wearing matching Christmas outfits. You just know some people have been waiting all year to brag about their kids, their good fortune, etc. Of course, if my 8 year old had been to 7 countries in the past year or my 5 year old spoke fluent Mandarin I might be tempted to brag, too.

We all have a web presence now. Many of us have moved beyond what my father deemed the "narcissism" of Facebook into the admittedly more narcissistic Blog.

Now I think you want to know not just what I'm making for dinner or my thoughts at the moment, but details about these things! Hilarious, I admit. On the other hand, if you've read any of my blogs I'm NOT bragging. Bitching, maybe; but bragging, never!

We've had lots of happy moments this year, but there have been trials and tragedies as well. Let's see this blog started with the failure of our sewage ejector pump and continued through a broken hip, hospitalizations and my frustrations with Medicaid. To not acknowledge the bad times minimizes the moments of pure joy that we share. Life, like marriage, is "for better or worse."

My blog started as a way to earn a free trip to Walt Disney World - write 100 posts and get admitted into the MomBloggers club which gets me an inside track to free trips (as long as I blog about them....)  I'm at 59 posts. To my amazement my most recent stats have me at 4,651 "views" - paltry compared to a friend that got 25,000 in  day! However I am proud of my modest success. I think I have to abandon the free Disney dream.  I enjoy writing. As I have admitted, this is the "online diary of a middle aged Mom." However, I can't write about why you should buy all of your gifts through Amazon.com or subscribe to an online shopping service.

Sometimes I'm maudlin, self-pitying or angry. Sometimes I'm introspective or even funny. But, I'm never for sale so bye-bye free trip to Disney. Hello, 2012! Wonder what I'll write about next year...

Do The Math

I have a friend who teases me that I always "do the math." Its true. I do. I rarely think "oh, that's only $75 more a month." My mind immediately jumps to "that's an additional $900 a year."

When I was a kid my mother taught me to mentally add the cost of my groceries as I shopped. Back in the dark ages it was a lot easier because I figured out that the items averaged $1 a piece. All I had to do was keep a count and then I'd be able to estimate my total. Now, with a big bottle of laundry detergent costing almost $20 it's a lot harder. Still, I'm normally within about $5 of the total once everything is rung up.  I actually switched groceries stores because I estimated that the average cost of items was 20 cents less at one store. I realized that if I typically buy 100 items I'd save $20 a week (or over $1,000 a year.) No brainer.

Same thing with personal services. Around here a cut and color costs about $150. If I color it myself and get a trim at Great Clips I save $130 a month (more than $1500 a year.) No one even noticed when I made the switch - except the time that I accidentally bought the wrong brand, but that's a whole 'nother blog. I don't get a weekly mani/pedi because at $25 a week it's $1300 a year. Those three small changes saved us $3,800 a year - that's a nice vacation, the down payment on a new car, or who knows what else. 

Now if I could talk myself into giving up takeout food... A pizza each week costs more than $1,000 over the course of a year. A daily grande latte adds up to more than $900 a year - and at 190 calories each it's a good thing to drop from my routine.

I don't make any decision without mentally doing the math. I calculate a cost/benefit analysis almost automatically. Some things are definitely worth paying someone else to do. They are too complicated or too dangerous. Sometimes its just nice to have someone else take care of you, to pamper you. I just think its important to realize what you may be giving up in exchange. Personally, I'll take a week at the beach  over a weekly manicure any day.

It's a matter of looking at the big picture.

Can I sacrifice a moment's happiness or convenience for something in the future? Sometimes the answer is "no". Sometimes I want the overpriced cup of coffee or the quick dinner. Sometimes I need the help. Sometimes I just want to look and feel pretty. As long as I understand what I'm sacrificing, it's okay.

We live in a society where we all think we can "have it all." I'm not sure why we think that. My parents grew up at the tail end of The Great Depression and during World War II. I grew up hearing stories about backyard victory gardens and gas rationing tickets. I never expected to have it all. I'm happy to have "some". The nice thing about not having everything is that, just like when you were a child, when you get what you want it feels special. It gives little treats that Christmas morning feel.

Also, I realize that I have so much more than many people. I get to make the choice between luxuries rather than necessities. I'm not challenged with considering whether I should pay the electric bill or buy groceries. I understand that my desire to take an annual vacation is as much a luxury as getting regular spa treatments.

I'm not judging. We all make our own choices. I just think we should try to make informed decisions - you know, "do the math."

Wallpapering War Stories

or as a friend subtitled it, "The Glue always wins."

When we were looking for a house I kept describing this as "the house with the palm tree wallpaper." The owners were from Savannah and apparently quite homesick. Maybe plastering the house with palm trees made them feel more at home. There were palm trees in the master bathroom, palm trees in the hall bathroom, lots and lots of palm trees in the dining room...

And there still are.

I am the least girly of girls. My mother reupholstered furniture and sewed new pillows for each season. The decorating (and the do-it-yourself) gene skipped a generation. I don't decorate rooms; I inhabit them. I am more interested in comfort than style.

However, I hate wallpaper in general and the red palm tree wallpaper in the hall bathroom in particular. I've heard so many horror stories about wallpaper over the years that here I am, seven years later, still living in a house with wallpaper in 3 bathrooms, 2 bedrooms and the dining room.

Amanda is about to turn 13. I've decided that it is unfair to keep a teenage girl (in a wheelchair) in a room where roller skates, baseballs and footballs circle the ceiling. So, the other day I grabbed a corner of the hideous border and pulled. Ooh! Success.  A long, ugly strip of wall paper curled away from the wall. I pulled again... an even longer strip ripped off this time. I was in paper stripping Heaven. I pulled and ripped for half an hour until all of the ugly stuff was down.

Well, almost all.

I was so proud that I dragged one of Danielle's friend's mothers into the room to show off my handiwork. I didn't realize that I had to get the white paper backing off as well until she calmly offered me her steamer to remove the rest. Oh crud.

I made a pilgrimage to local Lowe's where the clerk cheerfully informed me that I would need a scoring tool, Piranha wallpaper remover spray, a wallpaper shaver and a special sponge with a paste scrubber.  Total cost: approximately $25.00.  Okay, I had the tools. Time to go attack that ugly off-white paper.

It was fun. I made a few mistakes the first time (note to self: next time start in a corner that you can't see from the rest of the room.) Rolling the scoring tool around made a wonderful noise. I felt empowered as I watched it punch rows and swirls of tiny holes in that persistent paper backing. I sprayed the spray until the paper turned brown and the liquid ran down the walls. Then, my personal favorite, I shaved it off. It peeled off in pieces like wet felt. They fell to the floor in clumps at the base of my 6 foot ladder. I was back in Heaven.

Four hours and a few gouges later the silly white paper was lying in damp piles on the floor. Next horrifying revelation: the paint under the border doesn't  match the rest of the walls.

Crap. Now I'm going to have to paint.

Cape Cod National Seashore - then and now

Unexpectedly we found ourselves on Cape Cod during the week of the 50th Anniversary Celebration for the Cape Cod National Seashore. Standing in the Salt Pond Visitor Center, looking at the actual document signed by John Fitzgerald Kennedy brought tears to my eyes. Kevin was surprised that I could be so moved by the acts of a man who died before I was born. However, without JFK's foresight Cape Cod as we know it would have inevitably been different. My childhood would have been different.

Cape Cod has been a touchstone for me throughout my entire life. I spent my first vacation on Cape Cod just before I turned two. More than 45 years later and my heart still soars when I see the surf pounding the coast off of Maquire's Landing. When I was a child I cheered every time we crossed the Bourne Bridge onto the Cape. How wonderful to hear Danielle spontaneously yell, "Yip-pooo!" from the backseat when we reached the crest of the bridge and I told her that we were on Cape Cod.

The Cape Cod National Seashore is a precious piece of America. The Pilgrims first landed here- in Provincetown in November 1620 - not at Plymouth Rock. The Cape Cod National Seashore encompasses more than 40 miles of shoreline and preserves several  lighthouses and homes from the 1800s as well as 5 Modernist cottages built in the 1930s through the 1960s. There are miles of hiking and bike trails. There are public beaches and glacial rocks. You can swim, fish, surf or kayak in the waters.  It also a unique habitat, home to 800 pound gray seals and tiny piping plovers.

Me, 1966

By creating the Cape Cod National Seashore, JFK essentially arrested time. By preserving the coast and surrounding area he prevented Cape Cod from becoming overdeveloped with strip malls and waterfront hotels. The Cape Cod National Seashore was created by eminent domain and agreed upon sales and encompasses over 43,500 acres of ponds, woods and beachfront  in Provincetown, Truro, Wellfleet, Eastham, Orleans, and Chatham. 

Only 11 commercial properties were allowed to remain within the boundaries of the National Seashore. One of these was the Beachcomber Restaurant. Another was the tiny colony where we rented a cottage every summer when I was a child. The stipulations were simple: the land/property had to remain within the family.  Any sale of the property outside of the family was prohibited and the land would revert to the government. 

Making ice cream, 1975

I was able to go back to a place unchanged by time every summer for more than 20 years thanks to President Kennedy.  There are still  14 relatively primitive cottages at Cooks by the Ocean. Each is unique, but they have much in common. They have no cable TV. They don't have phones - or even showers! If you want to shower you have to walk to a communal shower house. These small cottages sit atop the dunes overseeing one of the few remaining private beaches on the Outer Cape. To one side is Marconi Beach, to the other is Maquires' Landing, both public beaches.



I loved those cramped cottages with their knotty pine paneling. Every cottage had a small deck, some with bouncy vintage 1950s metal shell back chairs in an array of eye popping colors. There was no air conditioning. You left the windows wide open so you could hear the surf and catch the ocean breezes. There were no phones, no radios and no TVs. We played outside. We played kickball, baseball and volleyball. We pretended that we were horses and superheros. We went to the beach early in the morning and late at night.

Me, 1981

As a teenager I brought friends to sleep in the living room of the one bedroom cottage. We'd wake up early to walk the dog along the beach at dawn. At night we'd head to the beach for a bonfire. Even as I changed, the place remained constant.

The kitchens all had a temperamental gas stove fueled by propane tanks behind the cottage. Our kitchen had vintage tools including an antique curved chopper that my mother loved, but never would have dreamed of removing. There was a sense of permanence. No on would steal anything because then when you returned it wouldn't be the same.

I took my girls back there when Danielle was 11 months old and Amanda was almost 9. The daughter of the family now owns the place and she was happy to let us wander around and enjoy the amazing sense of timelessness.  From the outside things were the same.  I bet if I'd gone into our old cottage I'd have found that chopper in a kitchen drawer.

Danielle, 2008

For more information please refer to:

 http://www.nps.gov/caco/cape-cod-national-seashore-50th-anniversary.htm

http://query.nytimes.com/mem/archive-free/pdf?res=F70A12FF395F1B738DDDAC0994DF405B8685F0D3

http://www.ccmht.org/links.html

http://www.cooksbytheocean.com/

Lost & Found

"Does anyone know who this belongs to?"  How many times have you heard a teacher or camp counselor ask that?

When Amanda was injured at school we accidentally left her backpack at the Kaiser medical building. The security officer saw the label inside and called us. It reminded me how important labels are. As we prep for our trip, summer camp and the return to school I've started compulsively labeling things.

I've put stick on address labels on all of the carry-ons we'll be taking as well as the various parts of Amanda's wheelchair. I've also put them on the backs of books and DVD cases.

I bought a complete set of Mabel's Labels  for each girl just after Danielle was born. I've used them on everything from sippy cups to stuffed animals.

The one on Danielle's baby "pinkie" has been there since she was a month old. Her pinkie went everywhere with her for years - and was left behind on more than one occasion. Thank goodness for the label. It has stuck to the blanket through hundreds of washes over the past four and a half years. It may be a little worse for the wear (so is the blanket!) but it's still legible.

With shipping a set of labels cost only $24.95 - that's about 36 cents each. I will use our last name and cell phone number instead of the girls' names so I can use the labels on either of the girls' things.  I know that this supply will last for years - and will stay on anything I put them on for years as well. 

Mabel's Labels has lots of great products. I'd like to order the Loot Bag Combos for a birthday party. I'd also like the 411 Wristbands for our next trip to Disney. By now you know that I'm "frugal" - okay, I'm cheap. I buy things on sale or at the Dollar Store. So when I splurge on something you know it must be worth the money. Check out the cute new designs on their site:

The label - still holding on 4 1/2 years later!

  http://www.mabel.ca/

I'm a Mabels' Labels Buzzmama - and periodically receive free items and samples in exchange for sharing information about their products.

Parking and Other Perks

Sometimes when I get off the phone with one of my closest friends, I’m struck by how different our lives have become. We grew up together in a typical, middle class suburb in Connecticut. We lived in nice subdivisions and attended public school. Neither of us stood out in any particular way.

Now she lives in a rural part of the country. And I mean rural. She raises chickens for the eggs and, occasionally, for the meat. When she wants a hot shower she chops wood and lights the burner on the boiler to heat the water. She grows her own vegetables and keeps a “parts car” in her driveway. She has three wonderful boys – all typical, healthy kids.

When I want a hot shower I turn on the faucet and wait a few minutes. When I’m hungry and tired there are places that will deliver pizza to my door. I shop at a grocery store for fresh veggies and have a mechanic repair my car. I have my two girls – one with special needs.

When we talk, my discussions about therapies, surgeries and IEPs that sound so mundane to me must strike her as surreal. Her kids get up in the morning and go to school. There are no discussions about inclusion. No meetings to arrange for adaptations. No plans to handle extended absence following surgeries.

Her boys participate in Boy Scouts and play Little League. She has never hunted for an adaptive sports league or forced her way into an organization in order to give her child a glimpse of a typical life. I’m sure she wonders how I learned to write a Medicaid application just as I wonder how (and where!) she learned to pluck a chicken.

How could two such ordinary people end up leading such extraordinary lives? Yet, most of the time neither of us sees our own life as extraordinary. I do what I have to do to give Amanda the best life I can. Just as she does what she has to in order to give her boys a good life. However, we both have to do very different things to meet those goals.

Despite our different life styles, we always make each other laugh. She can help me see the levity in a botched diagnosis just as I can help her find the humor in her daily grind. When I talk to her I realize that although my life is very different from the lives of the people around me, lots of people’s lives are different. And different isn’t always bad even when you didn’t chose it.

After all, I get great parking spaces when I travel with Amanda and I never, ever have to kill my own food.

Pick up the Pieces and Go Home

Parenting philosophies can be extremely divisive. I once had neighbors who had opposing stands on parenting and, consequently, detested each other. You could almost see their claws when they got too close to one another.

Now, I really hate being backed into a corner. It truly brings out the worst in me. I don’t understand why people demand details when I’m trying to get out of a situation gracefully. I try so hard to avoid confrontation with my white lies and evasions.

If I say “I think the kids have had enough of each other today” - please just leave it at that. Don’t go digging for details. Preschool kids are still young. They lose their tempers. They argue. They might even cry. After a while they get to a point where the best of friends can’t work things out at this age.

This is not the time to start expounding your personal philosophy for perfect parenting. It’s the time to pick up your kid, say “thanks for the play date” and go home. Don’t second guess the host parent’s motives for asking you to come get your child. I try to respect other people’s parenting choices, but there are times when I just can’t go with the flow.

It may be that when I say “the kids have had enough of each other,” I’m thinking, “I want a glass of wine after mediating between two four year olds for the past 3 hours.” Or I may really be thinking, “Your kid is a brat with no boundaries.”

Suddenly, I understand those two women from my old neighborhood. If you pressure me for the real answer about why I’ve asked you to come pick up your child, you may just get it. And then, chances are, we’ll both regret it.

Yup, those are my claws coming out...

Tellus – as in, Tell Us More about Science!

On my list of accessible family fun within an hour of Alpharetta, Tellus Science Museum in Cartersville ranks high.  I know, if you live in the Atlanta area Cartersville may as well be Tennessee. Trust me, this is worth the trip. We discovered Tellus over the Winter Break from school.

The first time we walked into the main gallery Danielle yelled, “An Apatosaurus!” I had to check the sign. Sure enough, she was right. Now we’ve been there so often that Danielle walks in and calls out “Hi, Patty!” (She’s named the skeleton.)

The draw for Danielle was obvious. It is the biggest display of dinosaur fossil replicas that I have ever seen.  I’ve never counted, but I’m certain that there are at least 20. In addition to Patty, there is a T Rex, a mammoth, a megalodon jaw, a giant armadillo, and a host of plesiosaurs and pterosaurs. There are fossilized tracks including a T Rex track - and even fossilized feces! (Dino poop that you CAN touch.)

Tellus takes its mission of teaching children very seriously. While most of the exhibits are clearly marked “Please Do Not Touch,” in every gallery there are items marked ”Please DO touch”. What a nice change for both children and adults! There are buttons to push, fossils to touch and things to explore everywhere, not just in the large children’s playroom, My Big Back Yard . Every weekend during the summer they host “Science Saturdays” with hands on learning stations throughout the museum.

The girls, of course, love the exploration area. I love that it’s a place where they can play together – not always easy for two such different children.  

In addition to the My Big Back Yard Gallery there are two more wonderful hands on areas. Children (and adults!) can pan for semi-precious gems or uncover fossils. Both areas are designed to be wheelchair accessible. Even better – both of these activities offer free souvenirs! Each child is allowed to take home a small (1”) Ziploc bag of the gem chips they find and one real fossil. 

What kid doesn't love to splash in the water? The Gem Panning area contains an authentic water wheel and a running sluice. It also has low, wheelchair accessible sections and an elevated area where young children can reach in to the running water to pan for gems.

In the Fossil Dig site you can uncover pretend skeletons as well as real fossils. The array of small fossils includes sharks' teeth, fossilized clams and sea urchins, crinoid stems and others. Danielle has been known to spend half an hour pretending to be "Paleontologist Danielle," discovering a new species. There is also a nice desk-like space where a wheelchair fits so the person can “dig” dinosaur bones.  

There are two other galleries to explore. The Weinman Mineral Gallery houses the collection from the old Weinman Mineral Museum.  We have touched petrified wood, banged on a drum head to create seismograph waves and stood near the "core" of the Earth. There is a very cool "glowing rocks" (fluorescent mineral ) display which both girls like.

The final area, The Science in Motion Gallery, includes antique cars and motorcycles as well as replicas of biplanes and space capsules. Kevin, Danielle & I have all had our pictures taken "wearing" a space suit (not accessible for those in wheelchairs.) While Kevin & I are both interested in space exploration this is probably the girls' least favorite area of the museum. Amanda did enjoy playing with the ship controls in the temporary At The Controls Exhibit.  

My kids really love sliding pennies down either of the two Coin Vortex machines. The smaller one, located just outside of the Gem Panning area, has shoots that are easy for Amanda to manipulate coins into. The girls get so excited "racing" their coins. I know that we are literally throwing money down a hole, but as long as I load up on pennies before we  go I don't mind if the girls have 50 races since it only costs me $1.00.

 

There is a great planetarium– one of only two digital planetariums in Georgia.  They offer three or four different shows every day, including one suitable for young children (3 and up) and a "Live Tour of Tonight's Sky." The show for younger children currently features Sesame Street characters.

The theater shows free documentaries on Saturdays during the summer. Both the theater and the planetarium are accessible with ramps and include areas for wheelchairs with companion seating.  

The Solar House is powered completely by alternative energy sources. The Observatory houses a 20" telescope and a seismograph used to detect earthquakes all over the world. The earthquake data can be viewed on an interactive monitor in the Weinman Mineral gallery. Both the Solar House and the Observatory are open only during limited times.

The Museum is on lovely grounds which are marked “No Picnicking on Grass.” That may be my only disappointment with the entire museum. There is a large covered picnic pavilion with accessible restrooms which would be great for a family gathering or field trips, but that lush green lawn just cries out to be played on!

The museum is all on one level with automatic doors, level walkways and clean, spacious restrooms both inside and out. There is plenty of permit parking and a call button near the parking lot for mobility impaired visitors who need to borrow a manual wheelchair to tour the museum.

For $95 we got a Family Membership good for admission for an entire year. The membership also included 4 planetarium passes and discounted admission to special events like Astronomy Workshops at the observatory.

So, no excuses, go to Tellus and tell me how it was!

http://www.tellusmuseum.org/index.htm

https://www.facebook.com/tellusmuseum?sk=wall#!/tellusmuseum