Why We Need Special Needs Sensitivity Training for Medical Professionals

It may sound like I'm whining today. Maybe I am. However everything I'm about to say is true. It may be a truth that most people don't want to face or admit to, but that doesn't make it false. 

The plain truth is having a child with special needs is hard.

I don't think medical professionals understand how hard.  Doctors and nurses often understand the science behind a disability without having any grasp of its impact on human lives.They should take a short sensitivity training course focused on talking with the families of children with disabilities.

We've run into a number of insensitive doctors and nurses during our 14+ years as parents of a child with special needs. I'm not discounting those that are kind and compassionate,  but they are surprisingly few and far between. Most doctors and specialists don't even bother to call us by name during our appointments. One surgeon called Amanda "munchkin" for years. I thought it was sweet until I heard him call the patient in the next room - and the room after that - munchkin as well. He didn't know any of their names.  I don't know if the study of medicine drives the humanity out of doctors or if they enter the profession because they are able to see people as bodies rather than personalities.

Today I took Amanda to the Genetics Clinic at Children's Healthcare of Atlanta (CHOA).  It was a dismal experience. Not because we got bad news - or any news at all - but due to the staff's attitude.  The nurse practitioner actually said, "I wasted 3 -1/2 hours reading your daughter's file and since I have a photographic memory now I'll never be able to forget it." 

Genetic testing is harmless - a cheek swab or a minor blood sample. Nothing compared to what Amanda has been through already. We were hoping to find other instances of the same deletion to possibly predict Amanda's potential medical problems going forward. We hoped that a more detailed analysis might explain why she was so much more impacted by this deletion than the few other cases we've discovered. The nurse's comment was uncalled for and unprofessional.

I wanted to ask why she bothered to read the complete file if she saw the original genetic test results and decided not to pursue more advanced testing at this point. Or why she hadn't cancelled the appointment based on this decision so we  didn't "waste" 3+ hours of our time as well?

It wasn't the first insensitive comment I've heard from a medical professional, just the most recent.

One of the first, and most memorable, was the Children's Healthcare neurosurgeon
who told us Amanda "would always be funny looking" when she was an infant. 

Or the original CHOA geneticist who was actually so excited to discover that Amanda had a rare chromosomal anomaly that she called us to deliver the news right before Christmas.  In her excitement to find a unique specimen she didn't think about our daughter as a person or us as a family. She never considered how the news would forever alter Christmas for our family. No letters to Santa, no running to see presents under the tree...

Learning that your child has a condition that will result in permanent mental or physical impairment is the emotional equivalent of being told your parent is dying. Your family changes irrevocably in that moment. Your life will never be the same. You grieve the loss of the healthy child you expected almost as if the child had died. 

And while you have a living child, the rest of your life will be difficult, expensive and confusing.  You will have to learn more than other parents about development, medicine, therapy and biology. You will read about things only doctors typically know. You will have to do things you never considered doing like changing a feeding tube or fixing a wheelchair. And it will never, ever end. It will change. Some things may improve, but it will never end. 

Whenever you get a new diagnosis, no matter what it is (autism, mental retardation, scoliosis, etc.), the pain kicks in again. You grieve again. Sometimes you see it coming; other times its a kick in the gut.

I remember taking Amanda for a routine hearing screen. She sat in the booth, looking around, but completely unresponsive to the noises being generated. She didn't turn toward the sounds. She didn't even move her eyes in the correct direction. She didn't react at all. I didn't realize that she was supposed to. 

After a few minutes, the audiologist turned to me and said,"I'm sorry to tell you that your daughter is completely deaf."  No forewarning. No softening the blow. Just her cold, dispassionate assessment of the situation. 

I sobbed uncontrollably during the drive home. It seemed like Amanda had been robbed of something so fundamental. To never hear her parent's voices, to never listen to music or marvel at the sound of crickets and frogs at night seemed desperately unfair when she already had so little. It was only when Kevin pointed out that if we used the remote to "click" the TV on Amanda would turn to look at it that I realized the audiologist was wrong. It wasn't that Amanda was deaf; she just wasn't interested in the noises.

While I was relieved by his observation I had to question what made the audiologist so certain - and what made her deliver the news with such a lack of empathy.

I came to the conclusion that she had no concept of the bigger picture. I doubt medical professionals know how many doctors and therapists the average family of a child with special needs sees, how many appointments they attend, how much bad news they have already heard during their child's short life. Every new diagnosis seems like another nail in the coffin. Every treatment denied is a new heart ache.

Today the nurse practitioner said, "Its not like her genes are going to change" to justify her denial. Did she think I didn't already know that? She made no effort to consider what the past 14+ years of my life - and Amanda's - had been like despite having allegedly spent hours reading her file. 

Not for a second did she consider why, after more than a decade, we would come back looking for answers. She didn't know how depressing it can be to change diapers on your teenager. How painful it is to be feeding a 14 year old baby food when other kids her age are going out for pizza with their friends. How frustrating it is to look into a future that will never, ever change. To know that you will never have a normal family vacation, that you can never go to the store or a movie without hiring a caregiver, that you will be spending thousands of dollars a year on diapers  for the rest of your life.

Forget the emotional impact of daily life,  consider the feelings the facts might create in a parent. 

She didn't think about what it was like to have child that didn't take her first steps until she was five and a half years old. She never wondered what it would be like to never hear your child's first word. She didn't consider how we as a family had managed nearly a dozen surgeries. The nurse didn't think about trips to the emergency room for falls, broken bones or seizures. She didn't take into consideration the number of times I've seen my daughter cyanotic, the times I've listened to her struggle to breathe, the times she's been on oxygen or the horror of seeing a crash cart raced into her hospital room when her heart stopped.  Even though every one of those facts was in the file she told me she had memorized. 

She should have realized that all I was looking for was, not a solution, but a glimmer of hope in an otherwise hopeless future. 

Having a child with special needs is extremely stressful. Imagine the normal difficulties of a marriage and raising kids then add in the extra burden of a child in a wheelchair, completely dependent on you for everything.  Imagine a 150 pound adult that you lift and carry and care for as if they are an infant for decades. Imagine the expense of diapers going on for years and years and years. Imagine the thousands miles you drive to go to four therapy appointments a week just hoping your child will be able to walk or talk or feed themselves   Imagine not being able to find care for that child so you never get a minute to yourself. Imagine having to give up your job, your marriage,  your friends because you can't leave that child alone for more than a minute and no one else can or will care for them.

Medical professionals need to see the reality behind the 15 minutes they spend with us as patients and parents to what happens during the other 23 hours and 45 minutes of that day. Without an insight into our lives it is no wonder they treat us more like lab specimens or inconveniences than people struggling to survive a very brutal life.


I've collected the following comments* made by medical professionals from other parents of children with special needs:

"One of the worst comments that was written about me was "mother does not like clinician's attitude". Well, duh, throw a diagnosis at me, go on about how this is the youngest child you've ever seen with this syndrome gleefully send off medical students to research it (and not ask permission) AND then it gets thrown on us that my son doesn't even have this syndrome. Think I was entitled not to like the attitude."

 "'...an IVF baby - well what do you expect cause you weren't meant to have a baby'. The 2nd was 'Oh, you had IVF and you spent all that money - such a shame that you got a disabled one'. "

*used with permission

Surgically Assisted Rapid Palate Expansion (SARPE) from a Parent's Perspective

 

This is the roof of Amanda's mouth. You can see that her palate (roof of her mouth) is only several centimeters across at the top. As a result of this narrowing her teeth are overcrowded and crooked. She has had several teeth pulled, but it hasn't helped enough.

Now she has to have surgery to correct the problem. Since she is nonverbal it is hard for me to know if she understands what will be happening. It's also hard to know how she will be feeling after the surgery.

Luckily for us there are lots of firsthand experience blogs online for me to reference. I contacted Brandi at Happygoplucky as her surgery was just completed this summer. She was realyl nice - wrote back immediately. I'm sure I'll be in contact with her often as Amanda recuperates.

So, future posts will be on our experiences as parents, rather than as patients. I hope that we can help other parents whose child with special needs - or without- has to undergo this surgery. Stay tuned.

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"A Farm in the Country..."

A while ago the parents of one of Danielle's friends decided to get rid of all of their pets. They had gotten the pets to teach their kids responsibility.

It didn't work.

The kids were bored with the pets and the parents didn't feel like taking care of them. So they posted an ad on Craigslist and gave away the guinea pig, rabbits and mice including the hutches and cages.

At the time the mother asked me not to tell her kids what she did. She told them that they went to live with wild animals in the woods. "We don't want them to think we're the kind of people who just give away their pets", she said.

"But you are," I thought. It reminded me of every TV sitcom where the parents tell the child that his dog has gone to live on a farm in the country.

Yesterday Danielle asked what happened to the animals. I told her, "Mrs. X said they went to live in the woods."

Danielle thought quietly for a moment and then asked,"So, where did all the cages go?"

Smart girl! I decided to tell her the truth. That the family didn't have time to care for the pets and gave them to good homes. It seemed far more compassionate than letting her think they neglected the animals and they all ran away.

"Why did she say they went to live in the woods?" Danielle asked.

Hmmmm... how to deal with this one?  Tell her the woman lied? Tell her that her friend isn't as bright and hadn't connected the missing cages to the missing pets? Again, I decided on honesty.

"She didn't want the kids to be sad that they gave them away. I think she thought they would be happier thinking they were wild and free."

"What about hawks? and coyotes? Won't the kids worry that they'll be eaten?" asked Danielle.

I sighed. "I'm not sure, honey," I finally said."But aren't you happier knowing they are safe?"

"Sure," said Danielle with a smile."And maybe the new family won't be liars."

Out of the mouths of babes! I don't know what lesson Danielle's friends got from this experience, but I know what Danielle has learned - the truth is always better than a lie.

 

Am I a Better Person Now? No, Not Really...

Amanda is disabled.  And, yes, I used the politically incorrect term deliberately. Amanda is essentially a 120 pound baby. She walks only with assistance. She doesn't talk. She needs help feeding herself, dressing herself, bathing herself. She still wears diapers. While she has special needs, she needs so much more than that simple term encompasses.

I am a different parent than I would have been if I hadn't had a child with a disability.

I am not a different person, however. I am no more patient than I was before her birth. I have simply learned to act patiently because losing my temper gets me nowhere.

I am just as vain as I ever was. However, I have put myself second to her needs for 14 years. I rarely have the time to put on makeup or the energy to exercise. That doesn't mean that I have achieved some deep inner peace that allows me to be okay with the way I look.

I am still selfish. I want more than anything to do the things I did before she was born - go out with friends, ride horses, work. I just don't have the luxury of acting selfishly.

Parenting requires sacrifice. Anyone with a child knows that. It doesn't matter if your child is a healthy, typical child or one with special needs.

However, parenting a child with a disability changes your life in ways you might never expect. I am always surprised when people compliment me, saying things like "You have such strength." No, I don't. I am weak and vain and selfish. I'm apparently just a really good actor.

Sometimes I think parenting a child with special needs must be a little like alcoholism. The hardest part is accepting that there is a problem. You have to confront the reality that your child and your life will not be like most people's.

 

You have to learn that it's okay to ask for help - financial, educational, emotional... And, its okay to accept help you didn't ask for. For me, one of the hardest things was learning to let someone else give me a break sometimes.

 

I remember struggling with the concept of accepting aid when Amanda was little and I first considered applying for Medicaid. A combination of pride and the sense of permanence -the idea that if I put it on paper it would be real - prevented me from filing the forms initially. I finally decided that it was no different from accepting a HOPE scholarship - especially as I knew she was unlikely to ever attend college.

I remember sitting in the Welfare Office with my then 2 year old, waiting to be interviewed. It was winter and the room was filled with people waiting for heating assistance and food stamps. I almost walked away. Not because I didn't want to be near them, but because I hated the idea that if Amanda got Medicaid someone else might be cold or go hungry.

I'll never forget an elderly lady, dressed in clothes that were clearly cast offs asking me if she could pray for my baby. There she was, cold, tired, possibly hungry - and she wanted to pray for us. I was stunned by her generosity. That was the moment that I knew it was okay to accept help.

I am not a better person because of Amanda's disability, but I do think I'm a better parent than I would have been.

When You're Done at One...

This post is lovingly dedicated to my long distance friend, Lucy... It was written in November 2005 -  a year before Danielle was born.  You never know how things will work out!

Before we got married we talked about everything – where we’d live, what we’d do, how many kids we wanted.  We had decided to wait for 5 years before starting a family.  That would give us time to get established in our careers, buy a house, and have some fun.  Five years came and went.  Every year after that we told ourselves, next year there will toys under the Christmas tree.  Next summer we’ll have a little one crawling across the sand at the beach. 

After another frustrating five years our daughter was born.  Tiny and beautiful, to us she appeared perfect in every way.  After all we’d waited so long for her – more than ten years – what go wrong now?

Well, anyone reading this knows the myriad of things that can go wrong.   Early intervention, hospital trips, therapists, and specialists you never knew existed all became regular parts of our world. Although there were toys under the Christmas tree now our daughter didn’t seem to notice or care about most of them.  She had so many sensory issues that the beach was a nightmare for her.

 Still, we wanted more children.  The doctors had told us that once I was able to conceive and carry a child full term subsequent pregnancies should be easy.  That wasn’t the case with us.  For years we suffered through miscarriage after miscarriage, always hoping that this would be the one that would last.

My 40^th birthday came and went and still we held out hope.  We loved our little girl, but we had dreamed of so many things we would do with our children and she couldn’t do any of them.  Not that we would trade her for anything!  She is the center of our world.  We’ve learned more about unconditional love than either of us knew was possible.

Slowly, I’ve let go of the dream of a “normal” family.  I was torturing myself around holidays always hoping that this would be the year she understood Santa, wanted to open her birthday presents, would actually eat the cake I’d spent hours baking and decorating.   I’ve settled into holiday traditions that work for all of us.  I still want a Christmas tree even if she never looks at it.  I still bake her big elaborate birthday cakes even if she only tastes the frosting.  However, I don’t make her open her own presents or even play with them.

Amanda, Christmas 2005

I do most of these things for myself.  I want her to have everything any other child would have even if she doesn’t seem to care. I would hate to think that someday she might look back on her life and wonder why she never had a birthday party or an Easter basket.   And I’ve let my dream babies go.  While my husband still won’t let me give away the crib, it’s disassembled in the garage.  As holidays approach I’ve stopped dreaming of Normal Rockwell moments... 

 Thank you, Kevin, for keeping that crib! I love you.

A Tangled Tale...or the Tale of Tangles

me, totally tangled

I think tangles must be hereditary. 

I grew up with thick, curly hair. When I was five I asked my mother to let me grow it out.  My mother agreed as long as I "took care of it" by myself. I tried. I honestly did.

But I couldn't reach the back of my head so I invariably walked around with mats.  I probably looked like a feral child dressed in polyester pants.

I remember battles when my mother finally got sick of it and took charge - typically before a visit to my grandparents' house. I screamed while my mother valiantly wielded a brush and a pair of scissors to make me socially acceptable.

I vowed not to go through that with my kids with the passion that only an angry nine year old can have. I got lucky with Amanda. She has gorgeous, glossy hair with a little wave that rarely tangles. In fact it is so lovely that every three years or so we have it cut and donated to Locks of Love.

Not my proudest moment
- she looks like she has dreadlocks

Danielle, on the other hand, has fine, straight hair that tangles when the wind blows. She can leave the house with every tangle combed out only to have them regenerate as if by magic. She has learned to hide it under a hat in public. Every picture from a recent trip to Walt Disney World features Danielle in a pink Belle baseball cap.

We have epic battles about her hair despite my best efforts to remain calm and be gentle.

When she was 3 she said,"can't you cut it instead of brushing it?" Out came the scissors. Five minutes later she had a Dorothy Hamill haircut straight from the 1970s. I thought that it looked adorable. She thought she looked "like a boy".

I don't want to go there again, but I can't live with the daily drama. The hair battles make us late for school, gymnastics and birthday parties. It has to end - NOW.

So I'm on a quest to tackle the tangles without tormenting my child. After all, I owe my nine year old self.

I've tried all of the No More Tangles type sprays with no luck. I've tried rinse out conditioners after shampooing. So far nothing has helped. Clearly the kids shampoos and conditioners aren't going to cut it.

Time to call in the heavy artillery. Here are the weapons that I acquired:

• Original Sprout Miracle Detangler - WOW! Worth every penny - good on wet or dry hair
• Wet Brush Diva Glide detangling brush - we'll see if it lives up to the name (IT DID!!!)
• Satin pillowcase  should decrease the friction while she sleeps and prevent tangles

Using the Wet Brush in the tub really worked - to my surprise!
Gentle and nearly tangle free the first time through

Conditioner - $11
Brush & Pillow Case - $16
No more morning battles - PRICELESS!!



When Your Best Friend is a Bully

When Your Best Friend is a Bully

This week Danielle did something that would be hard for most adults - she broke up with her best friend.

I had seen this child hitting her with a plastic sword and forcing her to sit in the hall outside of his room. When I mentioned it to his mother (we could both see it happening) she said "that's how he treats his sister." She clearly considered it acceptable behavior.

When we got home I talked to Danielle about it. She told me that he had been shutting her in his closet and not letting her out. Kevin & I asked how she felt about that. She said that it made her sad.

We explained that no one should ever treat her like that - good friends don't put their friends in closets. She took a day to come to terms with it. Then she crossed her arms defiantly across her chest and announced that she "never, ever, ever wanted to play with him again."  I'm so proud of her for coming to that decision on her own and being able to walk away.

When I tried to talk to the mother about it her response was "oh, kids will be kids" and "its just a game."

NO -it's not. It's not a game when one person feels bad. It's bullying.

I had a bully for a best friend when I was a child. The difference is that I never told my parents. My best friend from 2nd grade through 8th grade insulted me, hit me and kicked me. She made me feel like I deserved to be treated that way. As we got older she told me that I was ugly and stupid. To this day I am ashamed to admit that it happened. I'm ashamed that I never told anyone. I'm even ashamed to be admitting it now - 35 years later.

Looking back I realize that my friend grew up in a tempestuous household. Chances are very good that she was being abused and taking her aggression out on me. It makes me wonder what is happening at Danielle's friend's house. I'm so glad that this didn't get out of hand and damage her self-esteem for years.

I grew up in an era where we chanted "sticks and stones may break my bones but names will never hurt me." Bullying was a fact of childhood life in the 1970s. I know my brother was bullied. I doubt my parents realized that I was, too because I never told them.

That's why I'm so proud of Danielle. The courage it takes to stand up to a bully is phenomenal. Now I know that she is strong enough to handle almost anything that comes her way - and smart enough to tell us when she can't handle it alone. My brave girl.

http://www.eyesonbullying.org/childcare.html

Peach or Orange?

 Parenting a Special Needs Child

A bit of a cheat - Written when Amanda was only 2 years old...

The other day at lunch my neighbor laid several Popsicles in front of her two year old daughter. “Purple, orange, red, blue,” she recited as she set them down. Her daughter responded, “Purple, orange, red, blue.” My friend beamed and asked “which do you want?”

At our neighborhood play group I hear the mothers of typical children quizzing them all the time. “Count my fingers.” “Which is green?” Each competing with the other to prove their child is smartest. Why is it that parents of typical children all believe that their children are geniuses?

My two-year old daughter’s biggest accomplishment recently has been to eat a peach. To actually pick it up in her hands and take bites. We were so excited that we videotaped it.

This is the first time I’ve realized that having an atypical child is a gift. We’ve accepted Amanda’s limits. I don’t expect her to go to Harvard or compete in the Olympics. I don’t even expect her to show off in front of the neighbors. I’ve come to understand what most parents don’t realize until their children are much older. That my child was born her own person with her own strengths and weaknesses. That little I do can force her to excel in the areas I choose. My neighbors may be in for a rude awakening when they discover that their typical children are just that -- typical.

I like having an exceptional child. She’s freed me from the stress associated with competing with other children her age. We’re still waiting for the big milestones like first words and first steps, but until then we celebrate each small success. We don’t let the little steps slip by unnoticed like most parents. After all, the first bite of a ripe, sun-warmed peach really is the sweetest.

By the way, the little girl picked up the grape Popsicle and proudly waved it in the air yelling, "orange!"

Amanda when she was about 3 years old

Spring Break Atlanta Stay-cation

Spring Break Atlanta Stay-cation

We're staying home during Spring Break this year. Mainly because the one time we went away for the week of Spring Break the return traffic (from Florida to Atlanta) was insane - the trip home took 3 hours longer than the trip down. I know it's not a novel idea. As a child we never went anywhere for school breaks. I think sometimes as parents we feel that we "have" to make vacations special. The beauty of this plan is that it is special. It allows late mornings, lazy afternoons laying the grass looking at the clouds, ball games in the yard and al fresco dinners on our back deck. So relaxing!

I researched all sorts of things to do within an hour of our home, a suburb north of Atlanta. I debated some farther trips - like Chattanooga, TN but discarded the idea. I found plenty of free or low cost activities within an hour of home. Some of the things we did were every day things. We went to the local mall and had soft pretzels and ice cream cones. We window shopped, watched videos in the Disney Store and rode the carousel. Total cost about $20. One afternoon we went swimming at our local YMCA.

We have are lucky enough to have two nice nature centers close to home- Autrey Mill Preserve and Chattachoochee Nature Center. Located on 46 acres of ravine forest Autrey Mill is FREE to explore the historic homes and nature paths.  The Visitor Center is accessible and houses several tanks of snakes, lizards and frogs. Outside there are ducks. For a small donation you can get a cup of duck feed and the ducks will adore you. None of the historic homes or trails are wheelchair accessible but its a fun place to spend an hour - longer if you aren't mobility impaired. Some of the trails lead to a replicas of a Native American lodge and tee pee as well as a beautiful stream. They offer a number of historical and nature programs for about $5.00/person.

Chattahoochee Nature Center offers several walking trails including a boardwalk path, animal encounters and a nice play area.They a licensed rehabilitation center for native raptors, mammals and reptiles so you can see more than 50 different species that were rehabilitated, but unable to be safely returned to the wild. Chattahoochee charges $8.00 per adult and $5.00 per child to visit. We were able to bring a wheelchair to the Nature Center and along the boardwalk. The remainder of the Center wasn't accessible. Still, a great afternoon for under $30.
 
Another great FREE Atlanta destination is the Fernbank Science Center which houses a small museum, a planetarium (cost $4/adults, $3 kids ) and on Thursday & Friday nights an observatory open to the public. It is all wheelchair accessible. Nearby is the FREE Fernbank Forest which has 1½ miles of paved trails through 65 acres relatively undisturbed forest in the middle of Atlanta. Fernbank Rose Garden is also FREE and a lovely place for a quiet walk.

Because we live outside of a major metropolitan area there are a number of large tourist attractions. Our big splurge was to get annual family memberships to three local attractions. All are withing about an hour of home and will pay for themselves in 2 visits. We joined Fernbank Museum (see my previous blog)-family Membership cost $95- and Zoo Atlanta - family membership cost $99 (you can get a $10 discount online).
 
Zoo Atlanta is fully paved with (for the most part) gradual slopes. The path between the Backyard Habitat and the Children's Zoo is extremely steep and I wouldn't recommend taking it if you are pushing a wheelchair or stroller. The rest of the park is easily accessible by wheelchair. However, disabled parking is very limited - causing many visitors to become pretty aggressive about getting a space. We tried to go this week but were beat out of a parking spot despite waiting and having our turn signal on. So much for Southern hospitality!

I love Zoo Atlanta, despite the difficult parking. It is a modern Zoo with roomy naturalistic habitats for the animals to enjoy. One of the best things about being a member is free admission to the 2 member nights offered each year. Its wonderful to explore the Zoo in the evenings. The animals are often more active as the temperatures are cooler. Members Only Nights also feature live entertainment and special animal encounters- which my girls love!

For the first time we also bought season passes to Stone Mountain Park. Stone Mountain is a truly weird place - its a gigantic monument dedicated to the fallen leaders of the Confederacy. The carving depicts Confederate President Jefferson Davis, General Robert E. Lee and Lt. General Thomas "Stonewall" Jackson. It is literally carved into the side of a mountain - the South's own answer to Mount Rushmore. Really - it's not my goal to glamorize the secession and all it stood for. The annual pass lets us explore the various park exhibits and rides like the SkyRide and Gesyer Towers anytime we want throughout the year.  Stone Mountain houses a petting zoo, has a petting zoo attached to the Antebellum Plantation and Farmyard attraction. The farmyard offers a live show with trained goats and sheep.

My goal in going to Stone Mountain is to desensitize Danielle to fireworks before we head to one of those overpriced theme parks later in the year. Stone Mountain has a lasershow most nights during school vacations and on weekends. Despite living in the area for 15 years, we've never been to the show. You don't have to join to see the show - its FREE, sort of. You still need to pay the $10 park admission (parking fee). You can bring your own chairs and blankets. I didn't know that when I joined...  

I would encourage everyone to follow our model if you can. Most areas have unique, fun local spots to explore. Consider searching for a nature center, a playhouse, a puppet theater or a local history or children's museum. For less than the cost of two days at a theme park we had a week of great experiences as well as opportunities for a year of family fun through our new memberships.

Are there Any Novel Egg Hunt Ideas?

There isn't really too much you can write about an Egg Hunt that everyone doesn't already know. The premise is simple and straightforward - fill plastic eggs with toys and candy, hide them, and let the kids loose to find them.

I looked for ways to vary the process, even searching multiple blogs and websites. The funniest I found had an adult in an Easter Bunny costume getting out of a helicopter. Let's just say that isn't within my budget. Friends offered great suggestions like filling eggs with clues to find a large prize or personalizing eggs with significant events from the guests' lives over the past year. I'm not close friends with everyone we invited so that one might prove tricky. In the end, I decided to stick with the basics. As they say, "why mess with success?"

When I sent out the invitation I was careful to call it an EGG HUNT rather than an Easter Egg Hunt. My brother's family is Jewish and my parents always held a "robin's egg hunt" for his kids so they could have the fun of the hunt without the religious overtones. Since some of our friends are Jewish and Hindu I was hoping they wouldn't think it was a Christian conversion scheme (since I'm not a practicing anything.) I just want to see the kids run around like mad things, fill them up with sugar and send them home hyper.

I know that some people may object to my genericizing the event, however I am not holding it on Easter or even on a Sunday. Having done a little research it appears that there may be pagan origins to the tradition of hunting for eggs in the spring. Also, hard boiled eggs are traditionally part of the Jewish Passover celebration so who am I to say that egg hunts should be limited to little Christian kids? I certainly don't limit my children's friends to only little Christians.

Now, how many plastic eggs do you need for 26 kids? I purchased almost 600. That's roughly 23 eggs per child. How long do you think it will take them all to be a found? A friend commented, " Every Easter egg hunt I've ever been to has lasted about 90 seconds...'" I know things that last less than 90 seconds and are worth doing! (C'mon folks, think....)

We felt that it was important for us to provide the filled eggs as they were the focal point of the party. Filling 600 plastic eggs isn't exactly cheap - figure about 5-10 cents an egg and do the math. Someone suggested that I use the spare change I found around the house to fill the eggs instead of candy. I realized that a better idea would be to use the change to pay for the candy! I came up with almost $20 in change -more than enough to fill the eggs.

Knowing that the kids will all immediately plop down on the grass and eat whatever candy they find in the eggs I assumed that I didn't have to provide much more in the way of food or at least desserts.  Instead of a meal we'll offer drinks and light snacks. Friends generously offered to bring treats to share. 

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.

The Way to Wash An American Girl Doll...

Washing An American Girl Doll...

I am not a doll lover. Frankly, they give me the creeps. Barbies and fashion dolls are okay if a little trashy, but large dolls bother me. I hate their eyes - always staring at me.  I was a little scared of dolls even before I saw Trilogy of Terror or any of the Chuckie movies.

I've avoided buying the girls any baby dolls or the very popular 18" dolls. It was easy with Amanda - she preferred other toys. It's more of a challenge with Danielle. She clearly prefers playing with her stuffed animals to the one baby doll that she has so I've never had to confront my irrational fear head on.

However two of her very best friends received American Girl dolls for Christmas this year. I'm not a huge fan of "keeping up" so under normal circumstances this wouldn't be a concern. So what if Danielle doesn't have one?

Then one of the moms mentioned that she was considering having her daughter's January birthday party at our local American Girl Bistro.  Being who I am, I looked it up online. The site said "for girls and their dolls to enjoy a special day together!" So I called the store and asked about whether or not the doll had to be an American Girl doll. While they didn't exactly say "yes" they didn't say no either. The response was that any girl who brought an American Girl doll would get the special treatment for her doll. Anyone who didn't bring an American Girl doll would be welcome to borrow a doll for the duration of the party. Okay, not ideal, but not so horrible. What's wrong with a loaner doll for the day?

Then I remembered meeting friends at a "fancy dress" restaurant. The man hadn't realized that a jacket and tie were required. He spent the evening uncomfortably wearing an over-sized yellow jacket that the restaurant kept for just such occasions. We all felt awkward and out of place. The yellow jacket was as glaring in a room full of dark coats as a Scarlet A. I didn't want Danielle to feel that way if I could prevent it.

Luckily, one of her cousins had saved her American Girl doll from the mid-1990s. Her mother generously boxed it up - along with several outfits!- and mailed it to Danielle. She was lovely and Danielle was thrilled to get the package.

Then I noticed that the doll smelled...off. Musty. I tried Lysol. I tried Febreeze. I looked up American Girl cleaning instructions online. Following them I tried a gentle sponge bath. Then I tried soaking it in the sink... It still smelled weird.

I looked up the American Girl "doll hospital". Basic cleaning costs $24 (plus shipping). I even checked into the cost of a replacement body -$39! More than the price of the knock off doll sold at Target.  Finally, I put it in the washing machine, cringing the entire time at the thought of putting a $100+ doll in the washing machine. Here is what I did:

Step 1: Remove the head. Turns out it's only tied on to the cloth body. Brush hair. Sprinkle baking soda inside head, place in a sealed plastic bag with a small cloth bag full of activated charcoal. Creepy decapitated doll head.. yuck! at least the eyes are closed.

Step 2: Soak the body in the sink using mild detergent (Woolite) and baking soda.

 Step 3: Wrap and tie her in 2 clean pillow cases then into the washer for another rinse and a spin. Somehow I feel a little like I'm drowning a bag of kittens...


Step 4: She survived the washing machine! Now to dry her.
I've moved from the morbid to the vaguely obscene...

I'm drying her upside down to get any water out of the hollow vinyl arms and legs. I figure 24 hours in front of the fan and then a week in a bag with activated charcoal. If that doesn't get rid of the smell... well, I guess that's what perfume is for.

Tradition! Our Favorite Family Christmas Cookies

Neither my mother nor my grandmother liked to bake. I laugh every time someone tells me what wonderful baker my mother was. I know full well that she made Pillsbury Slice & Bake cookies, Betty Crocker brownies, Dromedary gingerbread and Jello Instant Cheesecake. I believe that was her entire repertoire. It all came from a box - except the cookies which were refrigerated. My mother said that she hated the tedious "plop plop plop" of making cookies. The only exception was the Christmas cookies that both my mother and her mother made from scratch every year.

They always made Norwegian Butter cookies. I have no idea why - we aren't of Norwegian descent. The recipe came from the Fanny Farmer cookbook. I still have the annotated copy that my grandmother gave me for my 16th birthday. She doubled the recipe, divide the dough into thirds and dyed it red and green. She then used a cookie press to create white camels, green Christmas trees and red stars. I still have her vintage cookie press, but its really hard to use. No wonder she only baked once a year!

My mother also doubled the recipe, but avoided the difficult cookie press. She refrigerated the dough and bravely rolled it out so we could make cookie cutter cookies. It's a very fragile shortbread-like dough and did not hold up well to rolling and cutting.

I now make the same recipe and refrigerate it. I then cut it into rounds and bake (after all I grew up on Slice & Bakes!) It is excellent as a thumbprint cookie dough, rolled in chopped nuts with a dollop of strawberry or raspberry jam. My kids don't like nuts so I just bake it in circles.

Oddly, the recipe calls for two cooked egg yolks. Family tradition requires turning the leftover egg whites into cornflake macaroons. This year I've made another minor break with tradition. I didn't have any cornflakes so instead I made meringues. It took 20 minutes to get nice firm peaks. I worried that I might burn out the motor of my old Sunbeam stand mixer, but it came through.  I made the meringues first and while they were sitting in the oven I made the butter cookie dough. I refrigerated it until the meringues were done and then baked the second set of cookies.

Norwegian Christmas Cookies

• 1/2 cup butter
• 2 eggs
• 1/4 cup white sugar
• 1 cup all-purpose flour
• 1/2 teaspoon vanilla extract

Directions

Preheat oven to 375 degrees F (190 degrees C).

Separate the eggs and hard cook the yolks.

Cream the butter and hard cooked egg yolks. Beat in the sugar and add the flour vanilla extract. Mix thoroughly. Put through a cookie press or arrange by teaspoonfuls on ungreased cookie sheets.

Bake 10 to 12 minutes, or until lightly browned. I iced mine with a little powdered sugar and a dash of almond extract diluted with 2% milk. I added food color remembering my Grandma's colorful cookies.

Meringue “Forgotten Kisses” cookies

• 2 large egg whites, at room temperature
• 1/2 teaspoon cream of tartar
• 2/3 cup superfine granulated sugar
• 1 teaspoon vanilla extract
• 1 cup semisweet chocolate chips or finely chopped semisweet chocolate

Directions

Preheat the oven to 350 degrees F and line 2 baking sheets with parchment paper. Set aside.

In the bowl of an electric mixer, beat egg whites until foamy. Add the cream of tartar and beat until fluffy but not at all dry. (Be careful not to over beat.) Add the sugar gradually, about 3 tablespoons at a time. When 1/2 of the sugar has been added, add the vanilla extract. Continue beating and adding remaining sugar in batches, until all of the sugar is dissolved and the meringue is very shiny and tight. Gently fold in the chocolate chips and chopped nuts. Working one teaspoon at a time, push a teaspoonful of meringue from the tip of 1 teaspoon with the back of another teaspoon onto the lined baking sheets, leaving 1-inch of space between cookies. Place baking sheets in the preheated oven and turn the oven off. Leave the cookies (undisturbed) in the oven for at least 2 hours and up to overnight, or until cookies are crisp and dry.

Per Meringue Cookie: (48); Calories: 44; Total Fat: 2.5 grams; Saturated Fat:0.5 grams; Protein: 1 gram; Total carbohydrates: 5 grams; Sugar: 5 grams; Fiber: 0 grams; Cholesterol: 0 milligrams; Sodium: 3 milligrams