Sunday, November 25, 2012

Accessible Christmas Around Atlanta - Lake Lanier and Stone Mountain

Special Needs|Developmentally Delayed|Mobility Impairments|Atlanta Attractions|Lake Lanier Magical Nights of Lights|Stone Mountain Christmas|AccessibilityDuring the past week we've explored two of greater Atlanta's major Christmas events - with two very different reactions.

Lake Lanier Islands Magical Night of Lights

First, let's talk about Lake Lanier Islands Magical Nights of Lights. The only magic here is that so many people are willing to shell out $60 a carload to enter the worst traffic jam of their lives. I'd been wanting to see these lights for years and we decided to go last night - motivated by a double $10 off coupon. Sad when $40 a car sounds like a deal.

The experience reminded me of when we first moved to Atlanta. People kept telling me how wonderful hot boiled peanuts were. How they looked forward to finding them at roadside stands in the fall. What a delicious treat they were when finally located. When I saw a stand on the way to Florida I talked Kevin into pulling over. A grizzled  old dressed man in camouflage clothes sat by an open fire, with a boiling pot hanging over it. I was so excited - I was finally about to have my first hot boiled peanuts! We paid him $4 and he dumped a scoop of something from the pot into a brown paper bag. I looked inside. Hot, wet peanuts - still in the soggy shells. They smelled bad, they looked bad - they tasted awful.

Lake Lanier Islands Magical Night of Lights was equally disappointing. It was hot boiled peanuts all over again. Maybe if you've been exposed to it your whole life you develop a taste for it. Otherwise, it ranks as one of the area's largest disappointments.

The lights are nice. Many of them are animated. I imagine if this had been developed in the 1950s people would have gazed in wonder at the sight. As it is even my 6 year old was "bored, bored, bored," in her own words.

On the plus side, as you drive your own car the lights are completely handicap accessible. You can control the level of stimulus by opening or closing your windows as well as adjusting the volume on the radio if you chose to tune it to the suggested station.

We paid our money and drove through the gate. We proceeded - slowly- for almost a hour through 6 miles of lights. What they don't tell you is that it is more like 3 miles, because you drive to the end and turn around, and drive slowly back through the same lights. The speed barely registers on the speedometer.

Many of the light displays are just ads from local companies - Coca Cola, Georgia Power, etc. After you crawl through the lights you are forced into the "concession area". There is limited parking - which is ironic since they make every car enter the parking lot. However, we found a parking spot (thanks to flashing the handicap permit at an attendant) and explored the carnival.


It was on par with any other local carnival. The rides were a bit "vintage" (translation: old). There was a thrill factor to the Ferris wheel simply because it felt as if you could easily fall out of your open swinging seat. I love carnivals so even in 34 degree weather I had a good time. Rides averaged $3 per person. A pony ride was $6.

Like any carnival, it was hard to push a wheelchair around due to all of the electrical cords. A big problem was also a lack of curb cuts on the sidewalks around Santa's Village gift shop. We had to bump the wheelchair down the curb backwards to get onto the fair grounds. It was impossible to bump it back up and we just gave up and took Amanda back to the car.

We avoided the gift shop and the paid photos with Santa. The ice skating rink is a novelty and reasonably priced at $10 per person including skate rental.

We spent a total of $63 on the drive, rides and a box of popcorn. Boy, was I happy I had that double coupon! I could easily see a family of 4 spending $150+ on an evening here. Even at my "bargain" price I felt slightly ripped off. Like boiled peanuts, this is something I only needed to try once to discover that I did not like it.

In the video you can see the cars who have turned and are coming back through the lights in the opposite direction.

Stone Mountain Christmas


Stone Mountain Christmas, on the other hand was lots of fun. First, if you are Mountain Members its included in your membership. So, for us, entrance was free. If you aren't members the cost is $28 per adult and $22 per child. Truthfully I might be more critical if I had paid $106 for this experience. It wasn't worth $100+. If you want to go, consider purchasing the Mountain Membership.  For twice the price of the Christmas admission ($56 per adult, $44 per child) you get unlimited admission to the park and free parking for an entire year. Regular membership includes a $10 discount off Snow Mountain - the deluxe membership includes free admission to Snow Mountain as well as free admission to the Summit Sky Ride and the  Ducks.

So keeping the cost factor in mind our experience at Stone Mountain Christmas was  a happy surprise. No one had ever told me about Stone Mountain Christmas so I had no expectations to be dashed. I discovered it because we are members and I was looking for something inexpensive to do. Like Lake Lanier, there are millions (no exaggeration) of lights at Stone Mountain for the holidays. Instead of driving through them the central area, Crossroads, is decked out so you can stroll through the displays.

Even the miniature golf course is decorated with thousands of little white lights, making night time golf a special treat. Part of the miniature golf course is accessible with a wheelchair - part is not. There is a sign which redirects you to the accessible holes partway through the course.

If you like, you can take the 30 minute train ride around the mountain. Holiday lights have been set up along the route so its a pretty ride. The rear car of the train has a wheelchair lift and staff are very helpful. There are ties to anchor the chair safely during the ride. The only downside it that it is an open air car and can be chilly. During this time of year they play Christmas carols which Amanda really enjoyed.

There is a small parade every evening at 6 PM. I think we counted six floats. The parade features the characters from the shows held in the park during Christmas so don't be surprised to see an alien robot dancing down the street. It was cute, but not something I would rush to see. The girls both liked it. Staff were very helpful and made sure that Amanda had a good view of the parade.

 
We were lucky to see the Georgia Bubbleman when we were there. He was wonderful! He created bubbles of all sizes and let the kids chase them. He made a special effort to include Amanda in the fun - coming over and blowing bubbles all around her wheelchair. He even gave an impromptu science lesson by blowing bubbles using the heated air from one of the fire pits. 
 
 

There are several shows throughout the area: Toyrific, Forever Christmas, Holly Jolly Cabaret, A Crossroads Christmas Carol, Visit with Santa Claus. There is also a "4-D" holiday movie, The Polar Express. On select nights (at 9:45 PM) there are fireworks. From the outside, I could tell that the shows are loud and may be a problem for people with sensory issues. We didn't make it to any of the shows or the fireworks so I think we'll go back. When we do I'll expand this entry!


However, just the fact that I would go back (again the same year) demonstrates how much more enjoyable we found Stone Mountain Christmas. If you are going to drive almost an hour outside of the city for one holiday event (and spend $100) I would chose Stone Mountain hands down over Lake Lanier Islands.


Note: This is my opinion, based on my family's experiences. I wasn't compensated in any way by either location.

 

Wednesday, November 7, 2012

Stocking Stuffers for Children with Special Needs

Stocking Stuffers for Special Needs|Stocking Stuffer Gifts Developmentally Delayed|Presents Special Needs|Gift Ideas|Autism Gift Guide|Gifts for Kids with Mobility Impairments|Stockign stuffers 2012
I adore stockings. For some unfathomable reason they are my favorite part of Christmas. I love searching for special little things to fill them - whether its a favorite candy or a memento from a trip. I love the little treats; this is not about a big splurge like hidden jewelry. It's about being thoughtful and remembering things the person would have liked or could have used during the year. I start the search months before Christmas, carefully stashing things out of sight in my closet.  I try to keep the contents for each stocking under a total of $25-30.

Stocking stuffers are extremely hard to find for Amanda. With limited fine motor skills crayons, markers, etc. are not good options. Cognitively she's not ready for flashcards or card games. Over the years we have exhausted most of the standard stocking stuffers typically suggested for kids with special needs. In no specific order these are:
  • Fidget toys like Tangle or Koosh balls
  • Maracas, egg shakers, wrist jingle bells or hand bells
  • Sour candy spray like Warheads or QuickBlast
  • Chewies and chewelry
  • Bandannas (for drooling/ chewing)
  • Bubbles
  • Curly straws
  • Travel cup

Don't forget that some classics are appropriate for kids with special needs. Almost every child has one or two types of candy that they like. Amanda likes gummies and marshmallows.  Children on the autism spectrum may prefer crunchy foods. Consider small bags of chips, 100 calorie packs of cookies or even individual sized boxes of cereal.

Lots of kids with special needs enjoy manipulating office supplies like stickers, post it notes, tape and bubble wrap. Hair ties, barrettes, a comb or brush and a new toothbrush are all stand bys. To add a little pizzazz (and oral motor stimulation) consider buying a musical toothbrush or a Spinbrush. Socks, slippers, hats and mittens are all good fillers. Expect a child with special needs to be about as thrilled with these items as any child would be (in other words, not at all.)



Now we move into the more expensive small gifts.  Computer games, Wii games, CDs and DVDs are the right size, but more than I typically like to spend.  Target has a section of $5 DVDs (Scooby Doo, Thomas, Barney, Strawberry Shortcake, etc.)

Other ideas in the $5-10 range include:
  • Hog Wild Animal Poppers (they shoot foam balls - great for developing grip strength)
  • Light up wands and spinners - distraction and fine motor
  • MP3 player (lots available for under $20)
  • Gak (gooey stuff) or Slime/Noise Putty from Dollar Tree- sensory
  • Floam or other play foam (non-drying molding compound) - sensory & fine motor
  • Crayon Rocks (Danielle loves them! ) recommended by Handwriting Without Tears - fine motor
  • Liquid Motion timer (we got ours from Amazon) - fidget toy
  • Jacob's Ladder (a classic wooden toy) or WhatzIt fidget toy
  • Light up balls - fidget toys
  • Small push button musical keychains (we have several that play songs from High School Musical)- sensory & fine motor
  • Magic Loops - I had this as a kid and still love it - sensory & fine motor
  • FindIt tube - can be bought (expensive!) or made inexpensively
  • Echo microphone - I saw these at Dollar Tree last week! - communication
  • Rainstick
  • Stickers, tape, character bandaids - fine motor
  • Small packs of chips or cereal - oral motor
  • Spinbrush  - oral motor
  • Harmonica or whistle - oral motor


This year Amanda's stocking will contain:
  • a Mickey Mouse light up spinner from our trip to Walt Disney World - distraction toy
  • inexpensive, folding headphones (not earbuds) $3 from Fry's
  • a new $5 DVD
  • A rolled up magazine
  • Livesaver Gummies
  • Christmas marshmallow Peeps
  • Mini Ipod speaker (from Michael's for about $5 with coupon)

Other helpful posts:
http://www.playworks.net/special-needs-toys.html good explanation of types of toys
http://www.growingajeweledrose.com/2012/10/100-stocking-stuffer-ideas-of-play.html has a whole section on sensory play
http://www.constructiveplaythings.com/cgi-bin/s.sh/2.0/category.htm?dept_id=Special%20Needs
http://unplugyourkids.com/2009/07/05/rice-find-it-jar-game/ making a find it game tutorial DIY
http://funandfunction.com/oral-motor-chewies-c-65_107_110.html

http://mommasbacon.com/2012/10/24/product-review-crayon-rocks-christmas-special-toddler-stocking-stuffer/

Tuesday, November 6, 2012

Gift Ideas for A Developmentally Delayed Teenager

Gifts for Special Needs|Gift Ideas Developmentally Delayed|Presents Special Needs|Gift Ideas|Autism Gift Guide|Gifts for Kids with Mobility Impairments
Once again its the most wonderful time of year for most children. Christmas and Hanukkah bring piles of gifts and big smiles... except when your child has special needs. Just trying doing a search on "gifts for special needs" and see what you get. Besides ads for overpriced therapy equipment posing as toys there isn't much guidance out there.


Every year ToysRUs publishes a "Guide for Differently-Abled" catalog that is somewhat helpful. This is a link to the 2011 Toy list from "Love That Max" -- sadly Amanda doesn't function at a high enough level for any of the 100 toys listed. All of them would present too great a physical challenge to do anything other than frustrate her.  This proves that, just like typical kids, all kids with special needs are not the same.

I've found a few posts from other moms with children who are considered "moderate to severely delayed" that are helpful.  My favorite gift suggestion was for the parents more than the child.  Thank you, Dream Mom for suggesting "Babysitting coupons so the parents can go out to dinner are always appreciated. So often with Special Needs children, none of the family wants to babysit since they are afraid or it’s too much work. While that may be true, there is often a time when the child is sleeping, that the parents can go out for a quick dinner."

Of course, no one site or store can determine what every child with special needs might want or enjoy. With Amanda's birthday only a month before Christmas I go through a lot of stress this time of year trying to find not one but two sets of presents that she will enjoy. I realize that if its hard for me to find a good gift it must be almost impossible for her grandparents and others who rarely see her. The key to giving a good gift is to know the recipient. It doesn't matter if they have special needs or not. You want to give a gift that will be enjoyed and appreciated.

Gift cards and cash are safe options - but they basically put the burden of shopping on the parents. Sometimes this is a relief. Parents can buy things they know their child needs or will enjoy. On the other hand, parents of children with special needs are often overwhelmed. This can be a sad time of year for us - missing out on the happy family moments others take for granted. You may be doing the family a favor if you step up to the plate and shop for your gift yourself.

Happily, there are some children with mobility impairments (in wheelchairs, using walkers, etc.) who are mentally and emotionally on par with their peers. Just because they aren't necessarily playing football or on the cheer squad doesn't mean that they don't want the same things their friends do. These are the "easy" kids with special needs. They may have difficulty using their hands well or walking, but they want the same toys that their friends have - American Girl dolls, Beyblades, a Wii, etc. Don't treat them like babies because they need assistance with some things.

In general, try to avoid anything physically demanding or athletic - unless the child specifically requests it! In which case, give them the chance to try. I know kids in wheelchairs who take karate and dance. Never sets limits for them. Our area has adaptive basketball, baseball, soccer and even sled hockey. Many children are able to integrate into typical sports with some assistance. You never know what opportunities may be available for kids with special needs!

Bowling is the great equalizer. Both of my kids can bowl. Its one of our favorite family activities. Call the local bowling alley and see if they have a ramp for people with disabilities (we've never found an alley that didn't). Give a gift certificate for a family bowling night. Many states have a Brunswick Zone bowling alley.

Giving gifts to children who are developmentally delayed (mentally retarded) is more difficult for family & friends. No one wants to offend the parents by buying their teenager a gift labeled "0-3 years" even if they think the child might enjoy it. Instead they fall back on socially acceptable (and uninteresting) options like clothes and stuffed animals.

I don't know any kid who is excited to get clothes for their birthday or a holiday - at least until he or she is old enough to want designer clothes and shoes that their parents are unwilling to buy.   Otherwise you might as well be giving them socks and underwear. Trust me, that adorable dress or cute sweatshirt is going to land on the floor within minutes.


While some children (including my youngest) love stuffed animals, many children with special needs - especially autism- dislike textures. Stuffed animals, instead of representing an adorable animal to cuddle, are something to be avoided with their fluffy fur and scratchy fabrics. It's called tactile defensiveness. Amanda had shelves of stuffed animals with the tags still attached that she never touched. I finally sprayed them with Febreeze, tossed them in the dryer for a few minutes and donated them to the local Firefighters to pass out to children during emergencies.


Instead, consider buying a musical gift - a CD, music box, etc. Many kids with special needs love music. Depending on their physical abilities musical instruments are great gifts. Most children (even very motor impaired) can play bells or a tambourine. Amanda loves her keyboard and has played with it for years. You can get a guitar for a child with good motor coordination. Look for PaperJamz musical instruments. No strings on the guitar ans easily mastered.


Amanda's Ipad was hands down the best gift she ever received. An Ipad or Ipod is a great gift if you have the funds. If the lucky child already has one or both of these, buy accessories such as durable cases, extra headphones (ours are always breaking or getting lost) and ITunes gift cards.  Our $50 Otterbox  case saved the Ipad from many falls.  However, after Amanda smashed the screen on her Ipad twice in one month we invested $150 in an AirDesk - another wonderful gift if you are looking to make an impact and have the funds. It's a rotating, free standing tray for an Ipad or tablet. It can be used near a chair, a wheelchair or even in bed.
Airdesk!

If you can't afford to give an IPad (who can?) consider a less expensive Kindle Fire or the kid-friendly, more durable MEEP. There are also plenty of MP3 players other than the IPod, that you can pick up for under $20.

Amanda loves watching TV. One year family members chipped in to buy her her "own" TV. It was the gift that kept on giving. It's in the livingroom, but she gets control of the remote. The rest of us have to watch TV in another room. DVDs are always appreciated - just check to see what the child has or would like. You'd be surprised. Amanda loves age-appropriate music despite her delay. She loves concert movies of One Direction, Jonas Brothers, the Cheetah Girls and Miley Cyrus -- as well as The Wiggles.

A dear friend gave Amanda her first Netflix subscription as a get well gift one year. It was ideal!  Redbox gift cards are another good gift along this line. A car or portable DVD player is a wonderful $60 splurge gift. It can keep the child content, calm and occupied at restaurants and places that are typically hard to go with a disabled child.

Even the most physically and mentally impaired children typically enjoy simple cause and effect toys with lights and music. Many of these are suggested in the ToysRUs Guide. Before buying one, ask the parents what the child already has. One year Amanda got three indentical Leapfrog toys. We were happy to donate two to Toys for Tots.

Some kids with special needs crave stimulation in the form of light and sound, others avoid it. A good set of noise reducing headphones can be a God send for loud places like the mall, theme parks, etc.

Kids with special needs often want "toys" that aren't true toys at all. My daughter loves to flip through magazines. Right now they are her absolute favorite gift. Despite the fact that she can't read. I don't know if she enjoys the pictures, the ability to manipulate the pages or just the sound it makes when she turns the pages. It doesn't matter. She enjoys them and that is enough for me. Last year her best Christmas gift came from her grandparents - subscriptions to two teen magazines. They were pleased to be able to give her something age-appropriate. She is thrilled to get 2 new magazines every month.

Another thoughtful gift idea is a custom photobook. Amanda loves her school year books so this year I made her an soft covered photo album as a surprise. To do this, take or collect pictures of the child's friends, family, pets, school, favorite things and places. Label each picture with the names. Have a book printed out that they can flip through. It will take an hour or so to create (depending on your computer skills) and costs under $30.

I know other kids who adore office supplies. Who doesn't love bubble wrap? You can buy rolls of it from Dollar Tree or Staples. Other interesting sensory items from the stationery section include tape, stickers, rolls or paper...

Other useful links
http://voices.yahoo.com/picking-gifts-profoundly-mentally-challenged-10760823.html

Friday, November 2, 2012

Feeling Blue in A Red State

Political Commentary|Democrat's Perspective|What it Feels Like to be a Political Minority|Vandalism

I wrote this 4 years ago. Sadly, things in Georgia have gone from bad to worse. Now children in our neighborhood are being mocked and threatened for their parents political views. Truly tragic.
 
 

Last weekend the homes of all of the known Democrats in our neighborhood were vandalized.  If you had told me a week ago that I, a middle-aged white Christian woman, would be the victim of a hate crime I would have vehemently denied it.  Now I know differently. In this highly polarized campaign, no one is safe.

 

I told a friend that I was still reeling from the crime.  She said in surprise,” it wasn’t a crime.”  No?  Then what was it?  Three homes were attacked for expressing their political views publicly. 

 

I asked her if it would be different it had been Christmas and somebody defaced a manger scene.  She replied in shock, “No one would do that to the baby Jesus!”  Probably not.  The Muslim family across the street wouldn’t.  The Jewish couple next door definitely wouldn’t.  What gives certain members of Republican Party in Georgia the right to deface the property of others simply because they disagree with them politically?

 

Freedom of expression is one of the cornerstones of democracy.  In fact it is so critical to democracy that the framers of the Constitution ensured our right to free speech by drafting the First Amendment.  Last weekend’s attacks were a shame. They were fundamentally un-American.  They were also a crime. 

 

I explained to my neighbor, that the crime is the same, regardless of the property involved. Trespassing, vandalism and destruction of personal property are all crimes. It doesn’t matter if it was a religious decoration or a political sign. Freedom of expression is what America is all about - but this freedom does not extend the wanton destruction of personal property. 

 

Another neighbor expressed regret over the attacks.  He told me secretly that he was also a Democrat, but didn’t want it known.  Not since the McCarthy era have people been afraid to admit they were members of a political party – and then it wasn’t the Democratic party.

 

I am saddened that this is what America has come to.  The media’s division of the country into “red” and “blue” states has made those of us who disagree with the majority in our state feel marginalized.  It has also given the majority an unreasoning sense of entitlement.  The attacks in our neighborhood were the result of an overconfident majority attempting to subordinate a perceived minority group.

 

 

Monday, October 29, 2012

The Almost Impossible Astronaut & Ballerina Party Photos

Astronaut Party|Ballet Party|Ballerina Party|Space Party|Kindergarten Party

The party day was cold and windy, but that didn't deter us from having a great time! We added an outdoor  fire, s'mores and hot cocoa and we were good to go. The kids stayed outside for more than an hour playing with the rockets, gliders and zipline before we came inside for cake.


My tutu wreath made on an embroidery hoop






Our homemade rockets and goodie bags

I didn't get any pictures of the kids performing on the reclaimed pallet stage,
but both the girls & boys loved it.
They found instruments like our Paperjamz guitar and put on a show!


Dollar Tree foam gliders were a huge hit (while they lasted)


They girls liked the Rocket balloons as much as the boys


Rocket balloons from Dollar Tree - tons of fun!
Tip: buy several balloon pumps if you get these
otherwise they are really hard to inflate

Stomp rocket was played with all afternoon by both boys & girls


Everyone loved the zip line! The flight training sign blew down

 


Space helmet visors raised to eat s'mores

Fortunately you can eat s'mores with your tutu and tiara on



Cake with moon topper and tutu
rocket craft



Craft & cake aftermath...

 
Please see previous posts for more information about the cupcake toppers, rocket craft, helmets, tutus and my tutu cake plate.

Tips of you try this party at home: splurge and buy a zip line if your yard will accommodate it. If you can't manage a zip line definitely buy a stomp rocket (or two!)  The toys from the Dollar Tree (gliders and rocket balloons) were fabulous. You could probably skip the dress up costumes and just buy a glider & some rocket balloons for each guest and they would entertain themselves until they broke and/or were lost.

This was a fun party, but at the end I was (as always!) exhausted. Next year, I swear I'm going to talk her into having her party outside of the house. I'll pay the extra $100 - it took me almost a week to clean the house, decorate and cook. Surely my time is worth at least $100. Live & learn....


Wednesday, October 24, 2012

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

SARPE|Surgically Assisted Rapid Palate Expansion|UPPP|craniofacial surgery|special needs

 
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.

I have just register my blog with Technorati. It will help my blog appear on more searches. I just  need to publish this

claim token: HHZJ48ARHN89

http://www.imperfectlypossible.com//feeds/posts/default

Tuesday, October 9, 2012

Simple Rocket Wand Craft

DIY Rocket Decorations|How to Make Rocket Wand|Astronaut Party


On my quest for activities for the Almost Impossible Astronaut & Ballerina Party, I got lucky and found pretty pastel star wands at Dollar Tree for the girls (3 for $1). I wanted something similar for the boys to decorate and play with. I came up with this easy craft.

I bought 30 paper rocket cut outs at Hobby Lobby for $1.99. I then bought 16 wooden dowels and 3 spools of thin ribbon at WalMart for about $2.50.

All I did was cut various lengths of red, yellow and orange ribbon. Then I glued them on to one of the rockets.

I rolled the end of a wooden dowel in glue. I outlined the rocket in more glue, place the dowel on it and then glued another cut out on top. This project  is so easy that your birthday boy or girl can help you assemble them.
 
The finished rocket wands were ready to be decorated! Each cost about 30 cents to make.


 

Sunday, October 7, 2012

Sometimes I think I hear her voice...

Craniofacial Syndrome|Pierre Robin|Velocardiofacial Syndrome|Jaw Distraction Surgery
Danielle slipped her hand inside mine as we walked down the sidewalk. Looking at the ground she said quietly, "Sometimes I hear a voice in my head. It's not yours or Daddy's. I think it might be Amanda's." 

She stopped walking and looked right into my eyes. "When they fix her mouth will she be able to talk to me?"

It almost broke my heart. I hurt for both my girls. For Danielle who so desperately wants a typical big sister. And for Amanda, trapped in her body with no way to communicate with us.

I get the same question from my father and my friends. "Will the surgeries help Amanda to finally talk?" I hate to give them the painful, truthful answer which is quite simply,"No."

Amanda is about to undergo a series of craniofacial surgeries intended to improve her ability to breath, eat and hear. No one  has given us any reason to hope that these will allow her to speak. We aren't entering into these surgeries casually. They are not intended as cosmetic, rather they are intended to improve and extend her life.

For years Amanda has had sleep apnea. We hear her struggling to breathe at night. Sometimes it grows quiet and then we hear a sudden loud gasp, as she resumes breathing, having briefly stopped for a few seconds. It sounds like someone surfacing from deep underwater, sucking in air greedily. It is terrifying no matter how many times I've heard it over the years. 

As an infant Amanda had difficulty feeding. She was fed through a tube in her nose while she was in the neonatal intensive care unit. When she came home she had difficulty nursing and we had to bottle feed her. I remember being accosted by an elderly man in the grocery store while I was purchasing formula. He scolded me for not breastfeeding my daughter. I wanted to shout, "If I did she would have starved to death by now!" Instead I ran crying from the store and bought formula at a CVS across the street.

Only recently has she been diagnosed as having most of the symptoms of Pierre Robin syndrome (PRS). Pierre Robin syndrome (or sequence) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw, a tongue that falls back in the throat, and difficulty breathing. Amanda's symptoms include a high arched palate, small jaw with receding chin, repeated ear infections, a tongue that is large compared to her jaw, breathing difficulties, choking episodes (as a young child), feeding difficulties, and low blood oxygen levels.

Oddly my fight to give Amanda a "normal" life may have contributed to this delayed diagnosis. If she hadn't learned to eat and was forced to survive on an NG tube doctors might have taken more notice of  the structure of her mouth and jaw. Another contributing factor was  that her genetic condition was so rare that there was no frame of reference for us as parents or for her medical providers. When Amanda was sent for genetic testing the geneticist had assume based on her cardiac anomoly and facial characteristics that she had velocardiofacial syndrome. If the genetics screening had confirmed that diagnosis Amanda probably would have been treated for PRS years ago as it is fairly common with that syndrome.

Danielle's question made me remember. Years ago, when I still had hope that Amanda would speak, I used to hear her in my dreams, too. I miss her dream voice almost as much as I long to hear her true voice. I miss the hope I had when I dreamed those dreams - that I will some day hear her speak.

Saturday, October 6, 2012

The Ballerina & Astronaut Party - Games & Activities

Astronaut Party Games|Ballet Party Games|Ballerina Craft|Birthday Party Games|Colored Shadows|DIY Rocket Playhouse|How to Make a Tutu|How to Make an Astronaut Costume|Moon Rock Party Game

Activities


Crafts are a good ice breaker for young children who don't all know each other. I'll have each child decorate a paper rocket or ballerina when they arrive. I bought paper rockets at Hobby Lobby, but I had to cut out ballerinas. The template came from Pottery Barn Kids so at least I didn't have to draw it. The craft materials will come from the supplies we have around the house (glitter, stickers, ribbons, etc.)

I strongly believe in unstructured play time. If you give children a few props and a lot of leeway they can create some amazing games on their own.

Dress Up & Play Time

This is my big splurge - a costume for each party guest. I confess that when I found tiaras and armor at Dollar Tree I tried to talk Danielle into switching to a princess and knight party. No go - she is set on ballerinas and astronauts. It makes me laugh. It's the kind of party we would have had when I was a kid in the 1960s and 70s -- very retro.

Ballerinas: I bought the girls each an adorable tutu from Halo Heaven. With shipping, the tutus were on sale for just over $2 each. (Tip: Get on to their mailing list. They have amazing sales!) They are every bit as nice as ones I've seen for $7-10 in stores. They have satin waistbands and three layers of tulle. Really lovely.

I'll hang the tutus over the windows so they look like curtains before the little girls put them on.


How to Make a Tutu

I think it is impossible to make a tutu for less than the prices at Halo Heaven. However, if you're feeling crafty & brave you can make your own no sew tutus by tying 20 inch strips of tulle around some elastic. All you have to do is fold the strip of tulle in half lengthwise, lay it over the elastic and then pull the cut ends over the elastic and through the loop. There are tons of tutorials out there if you want to go that route. I will warn you, however: one tutu requires about 20-25 yards of 6-inch wide tulle- and a lot of time! I priced 6" wide tulle at $4.99 for a 25 yard roll from Hobby Lobby- wider tulle was 97 cents a yard at Walmart if you don't mind more cutting.

 
I did make one tutu - to go around the cake plate. I love the way it looked and it cost less than $6.

Astronauts: Space helmets for the boys cost $4 and are adorable. Frankly, I think they are cooler than the tutus so I ordered extras in case some of the girls want to be astronauts as well. (My husband assures me that it is unlikely any 6-year old boys will want to wear a tutu. I'm not so sure...) In fact, I think the astronaut theme is much cooler than the ballerina theme - especially as Danielle dropped out of her ballet class.

How to Make an Astronaut Costume

Another idea is to make a simple NASA inspired baseball cap. Use a blue baseball cap ($21 for a dozen from Oriental Trading) then attach a space themed sticker to the front ($2.50 for a roll of 100) with fabric glue. Any leftover stickers can go in a pinata or goodie bags. Or - if you have only a few guests or an unlimited budget - use iron on printer paper to print the NASA logo onto inexpensive white T-shirts.

Games: Dancing & Rocket Launches

I had a hard time thinking up dance games that didn't involve a pretend ballet class. First we'll play Freeze Dance. For younger kids you can play the Choo Choo Soul Freeze Dance or Fresh Beat Band Freeze Dance songs. For this party I also like Laurie Berkner's Rocketship Run.  Danielle says those are "too babyish" so we'll probably play Rianna or Usher if I can find songs with G ratings...

Next I created  "Dreamlight Studio Stage" for dancing with colored shadows. Happily, my daugher thinks any raised surface is a stage - it doesn't have to be high. This is one of the rare instances where being a pack rat paid off. We nailed a scrap piece of plywood onto a pallet to create a sligtly elevated  stage. We washed them, then painted the top a pretty pink made from paint samples we had in the garage. Of course, Danielle helped with the painting. Then I draped the ceiling with tulle to create curtains.

This is secretly a very cool science experiment about light. You need three bright lights with colored bulbs (or covered with colored cellophane) and a light or white surface to create shadows against. You'll need a red, green & blue bulb (about $3 each at Lowes). With these three lights you can make shadows of seven different colors: blue, red, green, black, cyan (blue-green), magenta (a mixture of blue and red), and yellow (a mixture of red and green).

If you can only find low wattage bulbs, the kids will have to be close to the wall to see the different colors. I hope I can resist explaining the physics to a bunch of 5 and 6 year olds....


The backyard will be "Mission Control". We'll have a "Launch Pad". We have a stomp rocket already. The kids can also play with rocket balloons and big Styrofoam gliders from Dollar Tree.

I'll create a "Flight Training Center" where the kids can take turns on our zip line. I made sure to include a warning on the sign for the zip line. I'll set a basket of bike & horseback riding helmets near the steps. We wrapped the "target" tree in heavy duty foam padding. I want to keep this as safe as possible.


I found a tutorial on how to make a cardboard rocket playhouse from a garment box. I didn't have any friends who had moved recently but I was able to pick up a new one at a local moving center for $12- beats the $60 kits for sale online!

Party Favors : Moon Rock Hunt

Instead of a pinata we'll end the party with a Moon Rock Hunt. I'll wrap small toys left over from previous parties in aluminum foil and hide them around the yard. There was no candy in these since I was hiding them in the yard. I can't imagine anything grosser than picking up a prize covered in ants.

I'll use bouncy balls, small bottles of bubbles, shaped erasers, pencil sharpeners, plastic rings, yoyos, small plastic figures.  The kids can collect them in brown paper bags labeled "Moon Rocks" in a retro NASA font.