Here's My Voice

2012-02-13T18:22:00.002-05:00

Please read

2012-01-14T11:51:00.000-05:00

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

The Fall Came and Went...

2011-12-27T22:21:00.000-05:00

Well, it's the end of the year and I thought I should catch you up.
Mary has had an eventful autumn. She turned 6 in October; became not one, but two different princesses for Halloween; had a short stay in the hospital for hypoglycemia; visited her aunt and uncle in NYC for Thanksgiving; and celebrated Christmas at home!

Mary had a Fresh Beat Band theme party and invited 8 friends. They danced and partied and had a blast! She was thrilled at getting to dress up in dance costumes and listen to Fresh Beat Band music.

Mary has several princess dresses, but she also got two new ones for her birthday. She decided she wanted to wear one for the party on Saturday night and then wear the other for her school party on Halloween.

Mary asked to get her face painted, but she only wanted a white triangle on her face.

What a funny kid! LOL

Princess Tiana

Mary and her Aunt Ellyde (whom she Adores!)

Playing her new toy with Uncle Darnell

Thrilled with the Fresh Beat Band Concert at Carnegie Hall!

2011-12-23T18:19:00.002-05:00

Make a greeting

Mary 2011 so far.... In Photos

2011-09-19T12:04:00.000-04:00

Click here to view this photo book larger

AMC Conference

2011-09-08T09:10:00.000-04:00

In July, Mary and I attended the 6th Annual AMCSI Conference. AMCSI stands for Arthrogryposis Multiplex Congenita Support, Inc. Arthrogryposis means joints that are crooked. Multiplex means multiple. Congenita means at birth.
This conference was so fun and we can't wait for next year! This year, we traveled to Kansas City to meet Ani, Abby, Theresa, Lindsey, Luca, Gabby, Alayna, MinJee, Bonnie, Bev, Nathan, Jacob, Jen, Cheryl, Tracey, Dr. VB, Erica, Zak, Maggie, Jennifer, Deborah, Doris, Ward, Karen and so many more!
There were sessions for adults and for children. I learned about blenderized diets for G-tubes. Mary is now receiving a balanced diet of real foods instead of processed formula through her g-tube and she is much healthier because of this! I also attended sessions on PT and orthopedics. I learned different techniques for treating muscles and joints. I was given the idea to do serial casting on Mary's legs to get her to bend at her knees. She is going through this now and I am cautiously optimistic.
Some of the sessions Mary attended were the children's petting zoo.

She also participated in making something that all the kids participated in by painting with their feet.

Then Mary and all the attendees did Painting with Theresa.

Theresa is a professional artist who has AMC just like Mary! Her website is http://www.theresalucas.com/
To see the group photo of the conference attendees and Mary is right in the front, go to www.amcsupport.org

Summer trip Part 1

2011-08-02T10:10:00.001-04:00

Mary and I went on a long (16 days) road trip this summer. It was a great trip overall. Of course there were some ups and downs, but a great trip nonetheless!

UPS - Mary got to visit with her Nonnie!
Mary loved showing her the book she made that shows a lot of her work from Pre-K! I can't believe in September, Mary will go to school full days and be in Kindergarten!

my brother - Jonathan, me, sister - Ellyde, cousin - Greg

DOWN - We had to attend the funeral of my grandmother.
UPS - Mary got to meet her Uncle Jonathan for the first time! (FINALLY!) And while we were in the area, we went to Navy Pier and the Children's Museum. That was fun for her. Mary enjoyed watching TV shows on her iPad in the car during all driving we did.

Mary lost a tooth in the hotel the first night of vacation.

Mary is a good traveler. We drove from our home in New York State to a hotel in Ohio. From there we went to Chicago area. We spent about a week vising family there. Then we drove to St. Louis and spent the night. Our destination was Kansas City for the Arthrogryposis Multiplex Congenita Support, Inc. Conference.

More on that next time, but here is a picture of a friend that Mary met. :)

art camp

2011-07-28T20:03:00.002-04:00

Mary went to art camp at a local school this week. She loved it! The teacher was great. It was called "Art for Little Ones" and the kids were 5-6, pre-k to 1st graders. Mary is becoming quite the artist! Here is some of her art and explanations of how she created them.

Mary uses a glove with a hole in it. In the hole, we place a paintbrush and she uses it. Mary's fingers do not bend enough to hold onto anything.

Mary is left-handed and very determined to do things by herself when she can. She is very good at drawing lines and making dots with markers, pencils, and paints. Mary has only been using the glove technique for 10 months.

The teacher gave the students the direction to paint lines on the paper one day and the next day to fill in the in-betweens with 3 colors. Mary needed some guidance to stay in the lines, but
the rest is all her work!

Mary chose her colors by using her Dynavox. Mary's current favorite color is yellow. Some of her previous favorite colors have been purple, brown and red. Mary currently wants to be a teacher when she grows up. For a long time, she wanted to be a horseback-rider vet.

The kids were told to draw an animal and Mary used her Dynavox to choose pig. They used all sorts of paint and print techniques to make paper designs and cut the shapes for their animals.

Mary made the decision to draw a pig by saying so via her Dynavox. She then told a helper to draw the various body parts of the pig via the Dynavox. After painting the papers, she told the helper which paper was for which body part - via her Dynavox.

After reading monster books, the kids were told to draw monsters and color them in.

Helping Mary draw this monster was so cool! She loved the books and really got into the drawing! She used her Dynavox to tell me how she wanted her monster to be. First, she told me that she wanted the monster to have a big head. I helped her draw a big head. Then she told me the body would be little. Then she said that she would draw the mouth, so she did. Then she said she would draw the mouth.... again? I was confused, but it was her monster, so anything goes, I guess. And then I figured out what she was doing! She was making a two-faced monster. So she continued to tell me the face parts and doubled up on them. And then she chose the colors and I helped her fill in the colors. I admit that I did the eyeballs for her.

Sometimes Mary gets carried away and paints herself.

What true artist wouldn't get paint all over herself anyway? :)

BTW - I will post again about our big trip. I have had a lot on my mind. I'll try to get to it soon.

Hey Blog, How ya been?

2011-06-17T19:35:00.001-04:00

Dear Blog,
I am sorry that I have been gone so long. I have been very busy this spring. After Easter, I got overwhelmed with work and motherhood.
I attended Mary's Mother Day's Tea at her school. Mary and her classmates serenaded us with sweet songs and fed us treats. They served us like we were queens and gave us pretty homemade place-mates, corsages and coasters.

Performing for Mother's Day Tea

Mary has had her best friend over to play several times. Mary and Isabella have had fun playing puppies, bowling, and music.
At the end of May, we had to deal with a minor fracture of Mary's right tibia. She has healed well. She also started a new diet of some real foods, pureed/liquefied, through the g-tube. It is going well. Mary is getting more fruits and vegetables this way and is going to be getting more calcium and Vitamin D soon. In other medical news, she has come off all of her sedating seizure medications! She does take one drug to prevent seizures, but it is not sedating. Mary is very healthy!
Last week was the "Pre-Kindergarten Grand Finale Class of 2024" and it was fantastic! Mary was a bit shy and did better in the rehearsal than performance, but smiled on stage nicely. She played the drum a little bit, too. The kids sang frog songs and patriotic songs. And the teachers announced them one by one and said what they were going to be when they grow up. Mary wants to be a horseback rider.

Mary uses her DynaVox pretty well. She still doesn't use on command from a teacher, but uses it for communication when she needs something or has a question. Whenever we go to the doctor, Mary asks, "Will you look in my mouth?" and "Will I get a shot?" Since she has had the power to talk about these worries, she has gotten a lot more cooperative with opening her mouth and not crying for the shot! :) GO MARY!
I hope all is well in the land of Blog. I will try to update again soon.

xoxo

Happy Easter

2011-04-24T10:35:00.002-04:00

This free digital slideshow personalized with Smilebox

TV

2011-04-22T20:07:00.000-04:00

I was watching TV tonight and put on what I thought was a safe show to be watching with Mary. I am careful not to watch Law and Order or Criminal Minds or even House usually when she is around. I have Harry Potter and the Deathly Hallows part 1 to watch, but I am waiting for a time when she isn't around (whenever that will be???). I limit the shows I watch with violence and sex and swearing. I know she takes it all in. She has gotten into the show Glee, but I am (perhaps naively) believing that she is only loving it for the music. I have caught her paying attention to General Hospital, but I think that runs in the family - I got hooked on it before I was in Kindergarten, too. LOL

Here is what happened today. I had The Waltons on TV. The Waltons is an old 1970s show about a family living in the depression era. It is a very safe show to watch as a family. But this episode was the one where the youngest girl, Elisabeth, fell and broke both of her legs. She also damaged nerves and went home with no feeling in her legs, using a wheelchair, with leg braces and crutches to drag her legs along. There were many times in the episode that the phrase 'can't walk' was used. At one point Elisabeth and her friend visit a holistic kind of lady who claims she can cure Elisabeth, but of course, she falls over. The lady is yelling "walk" and Elisabeth is saying "I can't" and her friend is saying "She can't walk." I look at Mary and Mary is practically in tears.

OMG
I think I traumatized my daughter with my TV choice. We quickly turned it off and talked about how God gave Mary very nice legs and sometimes God gives legs that can walk and sometimes He gives legs that are for standing only or sitting in great wheelchairs. We hugged for a long time.

And then we put on NickJR. for the rest of the night.

Sick of It

2011-04-05T17:55:00.000-04:00

I am sick of a lot of things lately. I don't know if I am sensitive because we are cooped up inside all winter or if I need a break from working or if I just need more sleep. But people are driving me crazy.
I am sick of people telling me that my daughter shouldn't be in regular ed.
I am sick of deadlines and paperwork.
I am sick of waiting for phone calls and making phone calls.
I am sick of interviewing nurses and hoping they show up for their job.
I am sick of having a cluttered house.

Here is what I love:
I love that I can take Mary to get a special hair-do on Thursday.
I love that I am taking the summer off to spend time with her!
I love that my friends are visiting for a few days this month!
I love that Mary is going through a cuddly phase.

In the end, I guess I am pretty lucky.

Bring Kirill Home

2011-03-25T17:47:00.003-04:00

Please read this story and share it with as many people as you can.

Bring Kirill Home

Kindergarten Here We Come!

2011-03-14T21:38:00.001-04:00

I was talking with my sister tonight and was reminded just how far Mary has come in the 15 months she has been home. This is a picture of when she chose her own clothes. I love having a 'girly girl!'

3-12-11

Mary has been approved for a sleep safe bed and I am very grateful. She is continually challenging herself to get out of her bed at all hours of the night/morning to play! Usually she aims with her head. Now we are just waiting for a delivery date.
She did not like it when I went with her to school last week. Mary refused to leave the house without crying until I told her we would go to Burger King. (mind you - this is a kid who doesn't even eat by mouth) So I got my lunch at Burger King, gave her the toy and, unfortunately for her, took her to school. The moment we got to the classroom door, she burst into tears. She knew I was staying because there wasn't a nurse available. Once I promised her that I would let her hold the toy from Burger King during school, she stopped crying. Mary does not like Mommy coming to school. Mommy expects Mary to work hard.
Kindergarten registration is this week. I am going to request that she have the one man teacher at our school! I think she would do very well with a male influence.

never ceases to amaze me

2011-02-25T07:01:00.000-05:00

Mary and I are at our local hospital right now. She is in for long term seizure monitoring. All of her EEGs since she came home have shown zero seizure activity, but she is on 3 seizure meds and she has 4 different types of 'seizures.' Go figure. So we are trying to get to the bottom of this.
Anyway, she is trooper, as usual. However, she is more 'vocal' than before and more demanding. Using her DynaVox, Mary has done some great communicating. Her school wants me to catch it on video, but how do you catch spontaneous communication?
While she was getting all the electrodes glued to her head, the doctor had my attention to get some information. Mary started to get mad and called out 'Mom' 3x. I kept trying to assure her I was with her and everything, but the darn doc kept taking me away from her. Then she used her DynaVox again (on a different page) to ask "where's my mom?" At that point she was vocalizing (not a regular occurrence) and quite upset, so I ignored the doctor and payed attention to my girl.

Mary's new hobby - painting!

Another situation happened last night. Mary had just finished painting. She just told me 'no' she did not want to get back in bed. I asked a nurse to come in the room for a little while so I could go get dinner. I told Mary that the nurse will sit with her and Mary could get back in bed when I got back. When I returned 20 minutes later, Mary was in bed. Mary had used her DynaVox to tell the nurses (another one came in) a whole bunch of things - she needed suctioning (numerous times), she needed to get cleaned up, and she apparently insisted that they should pick her up.
I wonder what she'll say today?

Wisconsin Winter

2011-01-17T19:05:00.000-05:00

Mary had the best time visiting her 'cousin' Kaylee in Wisconsin. Mary doesn't have any true cousins, so we call Kaylee her cousin.

Mary and Kaylee at the airport as we wait for all of our luggage to arrive.

After the airplane ride there, Mary was very excited to get down to visiting! She used her DynaVox the most ever!!!! She asked so many questions and said so many things! It was amazing. She asked who everyone was that was in the van with us - Matt, Debbie, Kristi, and Joan (and Kaylee). Then she told about her Christmas presents and ask what people got for Christmas. And she asked for some Christmas Carols. We sang to her so she was stop talking for a while! LOL

Kaylee (2) and Mary (5) waiting to open presents

Mary and Kaylee get along real well. They both like horses and they enjoy the spinning chair. They played in the tent that was set up in the living room. They both like Dora and played with Mary's new doll. While it was nice weather, they played outside and had lots of fun!

sledding for the first time!

falling for the first time!

snow angel

examining the snow

Kaylee - sitting in the snow

Mary - sitting in the snow

loving this!!!!!

These girls would have played in the snow every day if the weather had cooperated. Instead, they played horses a lot!

Kaylee's near-life-size pony

It was a real fun visit and we were sad to leave. Fortunately, Kaylee and her family are planning a visit to our house in April! We plan on a lot of fun!!!!!

late xmas post

2011-01-15T21:00:00.000-05:00

Life is way too busy for me to post things as they happen. So I am going to go back and wish you all a belated Merry Christmas!
Mary was so excited to go on vacation for the holiday break! Unfortunately, I made a major FAIL and did not prep her on what it means to visit people. She understands staying in a hotel and driving to see people for the day, but staying in a new house overnight really threw her. The last time Mary stayed in a new house overnight was when she moved home with me. There was a lot of explaining to do when I realized this was upsetting to her. After explaining that we were not moving and she was staying with Mommy and we were going to go home to her own bed after we were done visiting, she wound up having a great time!

Santa Mary

Making a snow angel

so much to share... so little time

2010-12-14T21:22:00.000-05:00

Mary has been a busy girl and I have been a busy mom. Sorry I haven't posted anything recently. Holidays are upon us and Mary has been having some medical things. -nothing serious. Mary had some MRIs and we are trying Botox on her salivary glands - no results yet, but I am hoping! We also have an appointment in a motility clinic next month! Yea! Hopefully they can help her body move things along better. :)

In DynaVox news.... Mary has her switch mount and ear pillow for her wheelchair! She can use it perfectly!!!! yeah!!!!!! It was awesome - the minute it was put together for her, she understood. And she is a little chatterbox! At the doctors, she communicated well with the Dr. and then she asked me if I washed my hands after I used the bathroom. (she's learned how to be fresh with it already)
At the Christmas party, she said, "Merry Christmas," and told me when she needed to go to the bathroom and when she wanted to get out of her chair.
Unfortunately - 2 things.
1. Mary is freezing her teachers out at school and crossing her arms instead of using the DynaVox when requested.
2. The DynaVox Mount that we requested was denied twice, so we have to go to 'fair hearing' to try to get it approved through the insurance.

Mary has also played dress up with Dora using her DynaVox to tell us which piece of clothing to put on Dora. She wants a new dress up Dora for Christmas. Mary and I played Candyland last night with a friend. It was the first time Mary played and she was excited about it. She used her DynaVox to choose to be the green piece.

Things are going well here. We are getting buried in snow, but that is par for the course in Western NY! :)

2010-11-25T20:25:00.000-05:00

This free ecard generated with Smilebox

Mary and I spent a lovely mother/daughter day together. We don't live by family, so there is no big meal for us today. Mary and I went to the movies and enjoyed the newest Disney princess movie, Tangled. It was a good one and Mary really enjoyed the music, in particular! I hope everyone is enjoying the blessings in their lives. I am really enjoying my first Thanksgiving with my daughter!!!!

I just don't understand

2010-11-13T20:30:00.000-05:00

-how I can see how smart Mary is and others can't.
-why Mary uses her DynaVox independently at home and at the doctor's, but only HOH at school.
-why I do the majority of programming on Mary's DynaVox when she has 2 speech therapists, an assistive tech. specialist and a teacher.
-why it takes multiple phone calls to GI to get one referral to a motility specialist that I was told was going to happen 2 months ago.
-why Mary's DynaVox accessories have not been approved and arrived yet.
-how come Mary's seizures can't be the kind that can be obvious and able to be well controlled.
-why I can't find a nurse I like to work on Saturdays

Mary Story

2010-11-08T17:29:00.000-05:00

Mary's speech therapist wrote this story for the kids in Mary's class. What do you think?

Mary cannot use her muscles like most people, so she does some things differently. She cannot use her mouth muscles to talk or swallow, so she uses a Dynavox to talk. And Mary cannot use her leg muscles to sit, stand or walk, so she uses a wheelchair.

One thing that is different is her Dynavox. Her Dynavox is like a computer and she can use it to talk. Mary might hit a button with her arm to make the Dynavox talk or her teachers may help her hit the button. She might use her Dynavox to tell you something or to ask you a question.

Something else that is different is her trach. It is a hole in Mary's neck that lets her breath. Mary's nurses, Juanita and Sonya, use a suctioning machine to get saliva out of the trach. This makes a loud sound but it does not hurt Mary. Sometimes Mary might cough to get saliva out of her trach. She is not coughing because she is sick, she is just doing it to clear her throat.

Another thing that is different is the way that Mary sits and moves around. She might lay down or sit in special chairs. The special chairs help Mary to sit up. Mary uses a wheelchair to move around because she cannot walk. Her wheelchair is purple, her favorite color!

Mary loves the color purple! She also likes horses, Dora, swimming, playing outside and reading books. You can ask Mary to play. She loves playing with friends! She especially likes to play on the floor and singing “Row your boat, Head Shoulders Knees and Toes” and “Shake your sillies out”.

Halloween... a bit late

2010-11-06T19:33:00.000-04:00

Better late than Never?
Well, Halloween came to our house and we went to a party.

First, there was the decorating contest in the town. Mary made sure she did her OWN work and not cheat like some others who obviously had their parents work on their pumpkins. (I offered to help her, but she was adamant to do her pumpkin BY HERSELF!) Mary stood in her stander and finger painted her pumpkin for the contest. It was very original and beautiful. :)

Mary's is the one next to the glittery cat.

Mary and I met some friends for the corn maze a few weeks ago. It was a sunny, but cold day. We had a nice time. I posted about this here. Mary also got to ride on a cow train and everyone said 'moo' the whole ride.

hi mom!

We got our pumpkin to make a Jack-O-Lantern at the Country Way, where the corn maze was held. We (I) worked hard on the pumpkin while Mary did a good job supervising from her pony walker. She was very proud of the the Jack-O-Lantern, but not interested in getting the goopy stuff on her hands!

Mary was pretty excited to look at it at nighttime, too!

Mary dressed as Dora the Explorer for Halloween this year. She adores Dora. She has 2 Dora dolls and a bunch of other characters and several toys and movies. Mary thinks it is a thrill to wear her Dora jammies to bed! So I though it was fitting to allow her to be her beloved Dora for Halloween (even if I, myself, am not her biggest fan.)

Mary loved wearing her Dora mask. At first she was leery of it, but she insisted on wearing it the entire parade at school. We added Boots the monkey, Benny the bull, Backpack and Swiper the fox to her wheelchair.

Mary and I went to the church Halloween Party and Haunted house. The best parts for Mary were the ghost bowling that she is playing in the pictures above and the indoor haunted house. She loved the flashing lights and everyone saying BOO in the dark!!
During the day, we met my friend and her son at Starbucks and had to have a picture.

HAPPY HALLOWEEN!

Our ramp is featured in an online magazine

2010-11-02T20:15:00.000-04:00

The ramp built for Mary is documented in this month's edition of Complex Child Magazine.

PreK Student, Mary

2010-10-31T14:58:00.000-04:00

At Mary's IEP meeting last year, I pushed and won to hold Mary back a year. She is getting an extra year of PreK before starting Kindergarten next year. My reasons were because she has a fall birthday and she was still getting adjusted to her new home. She was also still immature in a lot of areas, but I don't really think they took that into consideration since she is a person with a disability. She is doing real well so far this year, I think.
In the 6 weeks or so that she has been in school, I feel she has made many accomplishments! She is in a regular ed. PreK class in her home district. She has a 1:1 nurse who rides the bus and stays with her for the 2 1/2 hour afternoon program. Mary has made friends and we have even seen some out in the community!

Mary sits in this rifton chair during Centers and during Snack

Mary has learned how to color using a specially made glove, made by her OT. Because Mary's fingers do not bend, she cannot grasp anything. This glove has a hole in it to hold the markers.

coloring at school - sorry about the quality, disposible camera

Mary is having great success coloring independently.

We had Open House several weeks ago and Mary was so excited to show me all around her classroom and show me her projects. She did a Green Monster project that she loved the most. She also has done projects about emotions and they had just started learning letters.

outside her classroom at Open House
After the concept of Open House was explained to her, Mary was excited to take me there!

Mary is learning a letter a week and she really enjoys this! She always has enjoyed letters and reading. To help her, we put a letter 'worksheet' on her DynaVox. She can work with this page to answer questions in class and to practice the letter, including the sound the letter makes!

I also sometimes give her 'homework' on her lightbox.

She can use one switch to activate the DyanVox and one switch to work the light box.

Mary has a few different options for sitting at school. She also has time to play on the floor, when she usually lies down with friends - they even try to dance/shake sillies like she does! When she is sitting, she is in the Rifton Chair, her wheelchair or in the chair that I got at a yard sale. It is her floor-sitter for circle time. Here she is trying it out for the first time.

we made some adjustments for saftey and support after this trial
Overall, she does very well with this, though.

Her class went on their first field trip of the year recently. They went to a local farm and had a wagon ride, picked pumpkins and petted animals. Mary LOVED it. They were real good about getting the bus for her to participate, but I think next time they will also remember to include her peers on her bus. (I am pushing for the full inclusion experience.)

Mary continues to choose to listen to stories at the Listening Center every week. She really gets into her books. Apparently, one day the story had a part where the character was sad about the mother leaving and Mary got real sad. Then she was happy when the story ended happily.

In vision, Mary continues to improve her tracking ability and increase her response time to lights in different environments. She also is working on color identification. Her vision therapist is helping us with using picture cues when her DynaVox isn't avaliable. She also reminds us about glare on what Mary is looking at.

In PT, Mary is doing Outstanding! She can stand for more than a half hour at a time in her stander and she can stand in a pony walker - she has even moved it independently 2x!!!

Mary is also practicing sitting on a platform swing. She is belly crawling for up to 6 feet. She is rolling up a hill. Mary has gotten very strong lately! :)

Well, I guess that's the scoop on my girl! She is having a good year so far and I (knock on wood) hope she stays healthy to have a good rest of the year!

The Fall

2010-10-22T17:52:00.001-04:00

So what's been happening???
A lot.

Mary was insistent that I let HER decorate HER pumpkin for the town contest. I couldn't help or give ideas... they were rejected. Mary used her DynaVox to tell me that she was going to fingerpaint it and absolutely NO HELP was needed.

She is getting that way about a lot of things...
Her riding instructors have noticed....

Maybe that's why her horse keeps walking into walls.......

Mary has made so much improvement in her riding. She can sit up for the entire lesson, holding her head up, keeping her back straight(ish) and her hips where they should be... She is riding a lot longer than when she started in April because not a lot of time is being spent repositioning her! Too bad her mean mom is making her stop during the cold weather. :s

Mary is 5 years old and very proud of that! She had an awesome birthday party and 4 of her friends came. The next day, she used her DynaVox to tell her classmates about her party. I am told she was super excited about it!

Mary and I have done a few fall activities this month and last. We went to get some pumpkins and into two huge teepees. They were real dark inside with lighted jack-o-lanterns - Mary thought it was cool!

We also went to Country Way Corn Maze which was awesome because there was a huge bale of hay for Mary to play in! We also got another pumpkin and watched some duck races. Mary played with a friend there, too.

She is doing real fantastic things in school which I hope to post about later this weekend!

Got It!

2010-10-09T19:47:00.001-04:00

Mary's got her blue DynaVox VMax! Her reaction to it was great! Very happy. The following day, her nurse came and Mary rolled over to her new device eager to show it off!!
We are still waiting for some of the accessories to make it truly work for her, but we make do for now. Mary uses it at school the best she can and she uses it at home. We have started to take it out in the community when feasible. She has used it at Sunday School and at the doctor's office.
At church, Mary used it to make choices during a coloring project. That was successful.
At the doctor, Mary carried on a long conversation with me in the waiting room. She was there for her yearly physical and wanted to know if the Dr. was going to look in her ears and mouth. She also requested to lay on the bed (the pediatrician has a fun bed to lay on). In the exam room, Mary said 'hi' to her Dr. and then asked if she was going to get a shot. That was the end of the DynaVox, though... tears... 3 shots were coming her way. :(
This afternoon, Mary used her DynaVox to let me know how she wanted to decorate her pumpkin. The town has a contest for 4-9 yr. olds. Mary chose to use fingerpaint on her's. She will enter it in the contest next Saturday.
Tomorrow Mary will try to use her DynaVox at her birthday party.
I will try to get some pictures up this coming week!

Do Unto Others

2010-10-07T17:53:00.000-04:00

Do Unto Others

Think about this blog post when voting on the next election and healthcare issues

Letter to parents

2010-09-21T21:17:00.000-04:00

Let me introduce you to my daughter, Mary.

Mary is a student in your child’s class. She has been sharing information about herself with the children via her DynaVox. Her Dynavox is her augmentative communication device – it is a computer that can talk when she activates it with a switch. She is learning to communicate that way because she was born with Arthrogryposis and cannot use the muscles in her mouth very well. Because Mary’s mouth muscles don’t work very well, she has a tube in her neck for breathing. It is called a tracheostomy – we call it a trach (pronounced trake.) Sometimes Mary needs secretions suctioned out of her trach. It doesn’t hurt her and it isn’t messy when she needs this. She has a nurse with her all the time and her nurse uses the suction machine to help Mary. She also uses a wheelchair because her joints and muscles in her legs don’t work the same as most people. Mary’s wheelchair is purple, one of her favorite colors! Some of the other things she likes are horses, Dora, swimming, playing outside, and reading.

If you have questions or concerns about Mary’s condition or friendship with your child, please feel free to call me.

Chaney, Mary's Mom
This is the letter I wrote for Mary's classmates' parents. I am pretty pleased with the way it turned out.

Random words of a busy mom

2010-09-21T16:31:00.000-04:00

I have been too busy to post.
School has started and I am back at work.
Mary loves PreK and her teacher - she made a best friend on the first day! lol
Her teacher wants me to write a letter to the parents explaining Mary's medical issues. Mary used her DynaVox to explain them to the kids and the teacher wants to be sure the parents hear the same version.
Mary lost both her top front teeth.
I got sick on the second week of school.
Mary got sick a few days later.
We visited a pumpkin patch and Mary showed me how strong she is by pushing a bunch of pumpkins around. She also enjoyed the haunted Tee-Pee with Jack-O-Lanterns and glow-in-the-dark stuff.
I'm exhausted.
When is the first school vacation?

Doctors and Labs

2010-09-09T08:16:00.000-04:00

Mary is experiencing some odd lab work and visits to new specialists. If you live near a pediatric motility specialist, please let me know about it. There are only a few in the country.
I can't wait until we get her DynaVox VMax with the accessories so we can travel to the doctors appoinments with it and she can answer questions. I tried to ask her about pain at an appoinment, and all she could do was laugh at me. If we had her DynaVox, she could have at least answered yes/no or used her body parts page. Another month and it should be here.

Mary has been having fun with friends before her school starts. She had a playdate with a new friend and they played dress up. She also went to the zoo with a friend and enjoyed the rhinos and playing in the animal playground equipment.

Mary has been playing with her stuffed animals, too. She recently saved her pony from Swiper the fox.

Inclusion for my child

2010-09-05T17:48:00.000-04:00

I am choosing to put Mary in an inclusion district-based program this school year. A friend led me to an online magazine with this article that describes a child in a similar situation that is working well! I am going to share it with Mary's teachers and Spec. Ed. Chairperson and hope they take some of the good ideas from it!

IEPs by Dr. Suess

2010-08-29T18:51:00.000-04:00

IEP

Veto by the boss

2010-08-29T14:30:00.000-04:00

Mary chose blue. The votes came in and the first place was pink, blue was second, and all the others had one vote each. However, the boss spoke and she chose blue. So once the leaves fall, Mary should have her blue DynaVox VMax with accessories: ear pillow, wheelchair mount, switch, switch mount.
School starts a couple weeks before it all arrives, but we have a loaner device until her's comes, thanks to her therapists at Clinical Associates of the Fingerlakes!
These are some of the icons on the device that she uses independently. She is still talking on the phone with my mom about once a week. She also tells her caregivers what she wants to do during the day. Mary has a page that helps her tell people about herself and how she uses a DynaVox and a wheelchair.

Mary uses this page to tell people about herself.

This is the page she uses during various therapies. Each icon links to open another page with choices, activites, concepts or whatever the therapist needed Mary to be able to access.

Mary uses this page to tell people how she is feeling.

Mary can call me to her and tell me what she needs at that moment.

Mary uses this page usually to tell her nurses what she wants to do during the day when she has 'down time.'

Trip to NYC

2010-08-27T11:55:00.002-04:00

Yes, I travel with my daughter. By myself. Why wouldn't I? She is a little girl who likes to go places. And so do I!
We recently went to NYC for the day. Yes. FOR THE DAY.
We took an airplane (JetBlue is the best!) in the morning and came back at night.

on the airplane - very excited. She go the window seat, of course!

It was a long day, but not a bad day. There was a medical reason for the trip (unfortunately) but we managed to have a little fun, too. It was Mary's first time in Manhattan.

She liked the subway, but wished she didn't have to sit in her stroller the whole time.

From JFK, we took the AirTrain to Jamaica Station where we took the E subway train into the city. We got off at Union Square and found a park to play in!

Mary liked this swing in Union Square Park!
14th and 4th

We had our appointment (very loooong) and then made our way to the subway again. We went to Times Square so Mary could see DORA up in lights!

Right on top of Toys R Us was the celebration of Dora's birthday and Mary got excited to go in and pick out her toy.
She chose a Dora guitar and has been playing music ever since!

Mary slept most of the way home - through the subway ride back to Jamaica Station, the AirTrain to JFK and through the plane ride.

For tips on traveling with a person with a disability go here.

Mary's Favorite Things

2010-08-21T13:06:00.000-04:00

Horses - any kind, anywhere! She loves pictures of them, sounds of them, talking about them. She loves the carousel, her stuffed horse, REAL ones!

Baths! Mary loves bathtime so much that it is one time that she gets so excited that she sometimes vocalizes!

Mary loves to swing and to be outside, in general. She usually tells her nurses at least once at day that she wants to go out.

Mary loves her sleep!

Mary loves books and has dozens and dozens. She is really into the Junie B. Jones series right now.
Another thing - Mary loves Dora the Explorer. It is her favorite TV show!

specialists

2010-08-18T17:56:00.001-04:00

I'm feeling overwhelmed with specialists this month. I guess it is to be expected since we are seeing a bunch of specialists this month...
On top of the specialist we expected to see, Mary is having an issue with her heart, so we have to see a cardiologist.
Summer programming ended and Mary is trying to decide which color DynaVox VMax to order. Go here to vote on the color Mary should get. I'm really looking forward to the day we can take her DynaVox to the doctor's office and she can participate actively (as much as a 4 (almost 5) year old can) in the conversation. Today she used a voice-output switch and her pediatrician seemed impressed.
Next we see a special orthopedist, then a dentist, then ENT, then GI and opthamologist. And in there somewhere we have to get into cardiology. We should probably get checked out in Urology, as well, but that hasn't been thoroughly discussed. Mary has to have blood drawn for a 3rd time in 2 weeks and I am not looking forward to that. She is an awful stick! Slow blood and weak veins that no one can find... terrible time. It is so sad to watch. :(

Right now I am watching Mary play on the living room floor. She is scooting around on her belly and I don't know why, but she is making a beeline for the dining room. Overall, she is a happy and playful kid. We have good nurses working with her now. What a relief that is!!! We are patiently waiting for the Pre-K notification that says if she is in the morning or afternoon class. School starts Sept. 8 and Mary is going to be in regular ed. at the disctrict!

DynaVox VMax Color Vote

2010-08-12T17:16:00.000-04:00

Mary needs to choose a color for her new DynaVox VMax. She has 5 colors to choose from. We are taking a vote to see what people think would suit her best! Click on the color choices to go to the vote. There is also a blue DynaVox, but I couldn't find a picture of it.

Black DynaVox

this is the smaller sized version of the one she will get

Green DynaVox VMax

She will not have the eye gaze part (black addition) on the bottom.

Pink DynaVox VMax

DynaVox VMax

She will not have the silver tracking device on the top.

Check back at the end of the month to find out which color she is going to order!

Start August with a bang...

2010-08-01T15:27:00.000-04:00

Usually I'd like to keep this blog positive, uplifting and, in general a brag-fest about my wonderful daughter!
Today I decided to get real. This is how the day started at 5:45a.m.
Mary had a rough morning and woke up crying. Her g-tube medicine port had popped open and she was covered head-to-toe with foul-smelling Peptamen formula. Gross. She was so upset. :( And probably hungry, since several ounces of formula were on her bed instead of in her stomach. I think she must have had a lot of gas or something and pushed the g-tube open.
There was formula all over her bed, the crib bumper, her hair, her clothes, and her trach ties were soaked in it. She was coughing and crying so hard, she was also gagging a bit. I just wanted to pick her up and comfort her, but she was still connected to her monitors and feeding pump - and needed suctioning. She was also a disgusting mess.
Cleaning her off took a while, amidst suctioning her trach constantly. I took Mary out of her bed and cleaned her on the floor as best I could with baby wipes and wet washcloth. She was trying to cry and go back to sleep at the same time. I set her up cuddling in a blanket and hooked back up to the rest of her feeding on the floor while I dealt with the bed. She never did go back to sleep, though.
Once her feed was finished and I felt she was awake enough, I threw her in the tub and gave her a good soak. She smiled big appreciation for that! She hates to be messy.
We are doing better now, laundry in and new sheets on the bed. I am a bit worried about her, though. Gave her extra formula during the day today. I am not sure her tummy is feeling okay or if it is her back. I have wondered about this for a few days now. When she is in a good mood, I will have to try to talk with her and get an answer via DynaVox. Mary has told me and others about body parts and how she is feeling on a particular day, so hopefully this will work.
Other news: We have these g-tube pads that are pretty awesome! They are cute and just the right size and washable. I don't have to tape anything to Mary's belly or deal with little 2x2s falling out of her clothing anymore. We call them a little bling for her belly!

Mary is a a busy girl!

2010-07-28T13:18:00.000-04:00

I have time to blog this summer since I am only working a few days a week. I decided I would fill you in on all the services and activities Mary does.

On Mondays, her nurse arrives early in the morning before we wake up and starts her medications, including nebulizers. She also disconnects her feeding pump checks her vitals. Therapies start with Occupational Therapy. Mary loves her OT! She also has special education and physical therapy on Mondays. Mary's nurse leaves when I return from work and I take Mary to Hippotherapy - her favorite part of the week! She rides on Scotty, the pony for 30 minutes to work on stretching and trunk control.

On Tuesdays, the nurse arrives for the same morning routine. Speech therapy begins with Mary today and they work on using the DynaVox. Mary then has OT and music therapy. Mary has vision services for an hour to work on strengthening those muscles. I arrive home and her nurse leaves. Mary then goes for pool therapy.

This summer, Wednesdays are fairly light for Mary and she only has Speech therapy and Special Education in the morning. She also has her Assistive Technology Consultant come to work with her on communication techniques. I stay home on Wednesdays and do all of her nursing care.

Thursdays, I am back to work, so the nurse arrives early for a.m. meds again. Mary has her third Speech therapy session for the week and begins her busy day. Mary also has OT, music therapy, and PT on Thursdays.

Fridays are very light - she only has PT in the middle of the day! Sometimes she has a nurse and sometimes she doesn't.

In August, we are going to a bunch of doctors. We have appointments with Neurology, Genetics, Orthopedics, and ENT. We already saw Pulmonary and G.I. this summer. The wheelchair vendor was out a few weeks ago, as well.

Busy, busy, busy!!!

Selena Gomez used a Dynavox!

2010-07-27T18:11:00.001-04:00

Summer Update

2010-07-24T16:46:00.001-04:00

It has been a busy July here! Mary is continuing to use her DynaVox and is doing very well! Her speech therapist and assistive technology person from school are writing justifications for her to get her own, with a wheelchair mount and other accessories this fall. Mary is able to answer yes/no questions, simple comprehension questions, talk on the phone with her grandmother, play pretend with her pony, tell us how she is feeling and other things with this device! It is fantastic! Mary always tells her nurses what she wants to do during the week by using her DynaVox and making choices.

In other news, Mary attended Vacation Bible School at church and Love Love LOVED it! We wish VBS was all summer long! Here are some pictures of all the fun she had.

most fun bounce house ever!!!

Mary also has a couple of little girlfriends she has been playing with this summer. Nikki and Julianna have had a few playdates with her and it has been fun. She has enjoyed playing puppies with both of them. Mary has a switch operated puppy and a remote control puppy, so it works well when there are two kids. She enjoyed swinging on Nikki's swingset and I feel guilty that I haven't hung her swing yet. Julianna got Mary into dolls a little. Mary likes her Dora doll best, of course! Just yesterday, Julianna and Mary put on a "bouncing show." It was cute. They were bouncing and stopping - that was the whole show! Kids are funny - they loved it!

Talking to Nonnie on the Telephone

2010-07-09T18:12:00.003-04:00

Mary talked to her grandmother on the phone tonight! She told Nonnie about getting a pony and how she plays with him. Then she used her photo pages to tell Nonnie about other things in her life! Nonnie asked some yes/no questions and Mary answered them. I need to add greetings and an "I love you" to a page so that Mary can answer more than 'yes' when Nonnie says those things.

Oh yeah, Mary also figured out how to close a page that she navigated to mistakenly. She waits to hear the cue 'close.' I am so impressed with her!

Mary got a pony

2010-07-08T18:06:00.006-04:00

Well, not a real pony. It is a stuffed animal and she took to it immediately! The first thing she did was pet it's nose. Then we got her Dynavox out and I asked her some yes/no questions about it. I found out that this horse is a boy. The horse she rides each Monday is named Scotty, but she told me that she did not want to name this horse Scotty. I suggested Spotty and she said "yes." This is one way she plays with Spotty using her Dynavox.

AMC

2010-06-28T21:34:00.001-04:00

AMC

2010-06-28T08:45:00.003-04:00

Mary has AMC. Support awareness for this disability by wearing blue on Wednesday!

Itsy Bitsy Spider

2010-06-20T15:10:00.006-04:00

Mary's favorite children's song is Itsy Bitsy Spider. I am grateful that DynaVox has that programmed on their "Young Child" pages! It is one thing that Mary is using to learn DynaVox with. Mary really loves the DynaVox, but has only had it a few days. She has made a couple of choices - books, songs and TV shows.
They way she uses it is by hitting the blue switch when the device scans -visually and auditorily- the desired item. The device then says the choice that Mary made.

communicating

2010-06-09T20:51:00.007-04:00

Mary communicates in a variety of ways.

facial expressions

gestures

eye gaze (sort of)

switches

and she just tried our friend's Dynavox today!

What is Mary up to?

2010-06-01T19:54:00.001-04:00

Where do I start with all the new things Mary is doing now? She is doing to a typical nursery school and has a lot of friends there. Mary loves to have stories read to her. Her favorites are the Froggy series and Arthur series. Mary also likes to play in the activity room where she can roll around on the mat and try to stay away from the kids on bikes!
She has started horseback riding and swimming and really loves them both! Mary is constantly pretending to ride her pony, Scotty! She is really into barn animals and goes around the house pretending to be a chicken, as well!
Mary loves her baby-sitter, Jamie, and they are planning a trip to the Strong Museum of Play this summer. I am sure it will be a hit and we will have to become members!

Message from Mary

2010-01-30T21:15:00.000-05:00

Make a Smilebox slideshow

O M G

2009-12-31T09:59:00.005-05:00

Life is busy...
We are home and having fun, but busy every minute of the day. She loves all her new toys and is very good at playing. She will be happy playing all day long...
So far, she has been mine for 11 days. We have done a ton of things in that time. She enjoyed the plane ride home... but Mommy spilled her pediasure all over the plane. oops.
Getting her gobs of things home in the van was a challenge, but we made it. I immediately got a migraine as we drove home and collapsed on the floor with my little girl at home. She played as I recovered... nice welcome home, huh?
In addition, supplies were delivered. A million supplies - trach kits, humidifier, tubing, sterile water, suction catheters, oxygen, saline, nebulizer kits, HME devices, probably more that I can't think of...
The next day ten UPS boxes arrived from her adoption agency. This kid has more stuff than god! Toys, stuffed animals, supplies, clothes, pediasure, bath chair, more supplies, day braces, night braces, etc.
THEN... We left town for the holiday! (Yes, go ahead and say that I am crazy.) She was a great kid through everything... happy and social! She loved it and we bonded nicely even though we were constanly in new places and meeting new people.

Mary and her Aunt Ellyde on Christmas

Mary

2009-12-16T21:01:00.001-05:00

Make a Smilebox slideshow

a quick video update

2009-12-15T10:01:00.004-05:00

Decided to go

2009-12-01T18:18:00.003-05:00

I've decided to go.
The adoption paperwork and ICPC are done and completed.
The only thing holding us apart is state Medicaid transfer.
I'm planning on showing up on the agency doorstep later this month. If that doesn't get the gears moving, I don't know what will! I've let them know and I think (hope) they are preparing. I hope that paperwork has moved and plans are in motion. I hope that the foster mom has been told. I was told that we can have a meeting the first morning I am there. Her caseworker said that she was pleased about my decision.
This caseworker has been awesome! She has been very timely in all her work and so kind and professional on the phone. I have been very pleased.
I have my plane ticket, hotel and car reservation. One way or another, my little girl and I will be together for Christmas!

an adoption shower

2009-11-11T09:06:00.010-05:00

I was really blessed this weekend to have some friends throw me an adoption shower. My friend, Lee, was super excited about this and she went all out! Cake, decorations, favors... the whole shebang! Here are some pictures from the event.

The little kids really enjoyed helping open presents for a child their own age! The boy even liked the princess towel! :P

Alicia -aka Yaya- made matching mother/daughter scarves and hats! They are wonderful!

I asked Onni to be my daughter's Godmother. Her response was yes!

My friend Donna made the cake and everyone like it. She does great cakes!

I think everyone had a nice time and I was so pleased to have the support of my friends.

I'm Back

2009-11-04T17:57:00.004-05:00

Hi

Sorry I disappeared for a while. Blogspot gave me trouble and I couldn't get on people's blogs for a while.

A lot has happened.

My little girl will be coming home at the end of this month!!!! The first week of Dec. at the latest! I will be in Florida for Thanksgiving.

She is so beautiful! She looks so smart. Her eyes are saying so much in the pictures I have seen.

She is right on target for weight and height for her age. She is delayed in her play skills, but likes age-appropriate TV shows, like Dora and Little Einsteins. She goes to preschool everyday and is learning communication skills.

I have completed most of my list. I met with the pediatrician and it went very well. We have a physical appointment set up for the middle of December. I found a nurse to attend school with her. I met with the school district and we are discussing appropriate placement. I have the phone company coming next week to install a line in her room. I am working on getting a night nurse. I have snow removal all arranged. I hope there isn't too much snow this winter!

things to do

2009-10-08T19:15:00.002-04:00

There are lots of things to do before my daughter comes. She is medically fragile, so there are things that need to be done to the house and people to call to prepare for her arrival. I think I'd better make a list.

-get a phone jack put in her room (need to have access to 911)
-call the electric company (to notify them of a medically fragile person in house)
-arrange for a.m. snow removal (I can't be going out to do it!)
-find the appropriate special ed. preschool
-interview nurses for school
-interview night nurses
-get CPR certified (for real :p )
-interview the pediatrician

There is probably more. I just can't think of it at this moment.
+I should get some papers to enroll her in the public schools tomorrow.
+I have an appointment with the pediatrician next Friday.

so much to do! I hope she can come home soon!

Been Matched!

2009-10-03T18:20:00.003-04:00

I haven't posted in a while. I've read other blogs, but haven't posted. I have been very busy with a lot on my mind.

I have been matched for an adoption! I will have a 4-year-old girl by the end of this year (I hope!)

This little girl is so darn cute, I can't stand it! She lives in Florida right now and her foster mom can't adopt her for personal reasons. She sounds like a fabulous foster mom, though!!! The little girl loves music, the color purple, visiting the mall, and the shows on NickJr.

She also has spina bifida, is respiratory compromised and has seizures. Once a contract goes through, I will go down to visit and prove I know how to take care of a person with these issues.

I CAN'T WAIT TO MEET HER!!!!!!!!!!!!!

MY normal

2009-09-16T19:31:00.003-04:00

Jasmine was born cortically blind, with cerebral palsy, a seizure disorder, mental retardation, and microcephaly. She developed hydrocephaly, secondary to her prematurity, for which a doctor put in a shunt. When she was a few months old, doctors put a trach tube to open her trachea for breathing. She turned out to need it permanently because she had tracheomalacia, an overly soft palate, and an overly large tongue. When Jas was five years old, doctors inserted a G-tube so she could receive the nourishment and medication she needed. Despite the medical procedures, Jasmine was happy, lively, and social. Through her many seizure-related hospitalizations, she held onto life and returned home healthier.
--------------------------------------------------------------------------------------
She was my normal. That was my childhood growing up and I wouldn’t change a thing!
When I was thirteen, I got an afterschool job as a mother’s helper with a child with severe cerebral palsy. I stayed with it until I graduated and still worked with her on college breaks.
I chose music therapy as a career because I saw how music therapy helped Jasmine learn. She learned how to communicate and engage with her environment more effectively because of music therapy. I wanted to do that for kids like Jas.
While I was in college, I worked part-time at an Intermediate Care Facility for the Mentally Retarded (ICF/MR) as direct care staff. This meant that I feed (sometimes g-tube), bathed, and dressed the residents who were unable to care for themselves. I also worked with each resident on specific life-skills goals.
When I moved to Rochester, I started my job working with public school students with disabilities. I’m currently placed in a middle/high school that has students who are medically and developmentally challenged. Many students use wheelchairs and all the students have communication delays or deficits.
I also do respite work and through this job, I learned how to take a blood pressure, chart oxygen rates and keep a pain scale chart. (I learned how to suction many years ago – Jasmine had required it.)
Maybe you wonder why I would want to work in a job like this and then have a child with special needs at home, too? Like I said before, it is my normal.
-------------------------------------------------------------------------------------------
I hope this helps you understand that I have given this a lot of thought and am trying to be patient as I wait for my child to find me.

closure

2009-08-26T17:31:00.006-04:00

To Whom It May Concern:

I have been pursuing adopting Jxxx, child number xxx on the Children Awaiting Parents website, for eight months. I have completed courses, including medical and behavior classes, MAPP training, and CPR/First Aid. My homestudy was complete as of July 31 and all background checks have come back clean. References that I provided indicated superior ratings for caring for children, especially for children with severe special needs.

My adoption caseworker, Lxxxx from XXXXXX Agency, and I met with Mxxx and Sxxxx of XXXX County DSS on August 5, 2009 to discuss Jxxx and his extensive needs. I learned of his medical and developmental needs and was not overly surprised at the care he required. As Jxxx requires round-the-clock care, I outlined three different methods by which I could gain any assistance I might need in providing this constant care while retaining my current job as a music therapist working with special needs students.

On August 10, Lxxxxtelephoned Sxxxx to let her know that I still was interested in pursuing adopting Jxxx. On August 13, Sxxxx called me saying that the agency was looking for a two-parent home with a stay-at-home mom. When I asked this state social worker if I had tried to adopt the toddler before my late husband, Craig, had died, she said that we would have been more seriously considered my application.[1]

Unable to comprehend why the state would choose not to consider a willing and qualified potential adoptive parent for a hard-to-place child, I consulted with an attorney who informed me not only that New York expressly authorizes adoption by a “single unmarried person” but also that New York law prohibits agencies from setting a higher standard for adoption by a single parent than a married couple.[2] The only relevant consideration should be the best interests of the child.

Given my willingness to adopt Jxxx, a medically fragile child who has been available for adoption for more than three years -- his entire life -- I do not feel the best interests of the child are served by excluding me from consideration as an adoptive parent for Jxxx. To do so for a reason explicitly prohibited under New York law puzzles me even more.
I am hopeful that my writing this letter will prompt the agency to reconsider this decision. Please contact me at XXX-XXXX and my caseworker at XXX-XXXX.

[1] I asked Sxxxx if she could put this information into an email, but she said she would be uncomfortable doing so.
[2] A New York regulation on adoption studies specifically directs that “[a]gencies must not consider marital status in their acceptance or rejection of applicants” and that “[a]gencies must not establish policies which place single or divorced applicants . . . at a disadvantage.”

Sincerely,

That was the letter that went out yesterday to numerous people. Realistically, I don't expect a change, but I am now telling myself to move on from this situation.

~oh, check out Adoptive Momma of Two and the cool books she is giving away about adoption!

VOICES for children in foster care

2009-08-14T13:28:00.005-04:00

When I was a teenager, I had an A Cappella singing group called VOICES. We sang at various local functions. We were actually pretty good and tried to make a demo, but then life separated us and we went off to college and pursued other careers.

One function we sang at was an adoption rally for children’s rights. We sang the song in the previous blog, entitled, “Hear My Voice.” It is from the perspective of a child who was given up for adoption. After being adopted and raised for a few years as infants and toddlers, children were being given back to their birth families because the mom or dad changed their minds or just found out about the kid or had another reason.
A child deserves a permanent home. A family deserves to know that they are a family forever.

My sister is a lawyer in NYC. She assisted me in looking up the law about discriminating against adopting parents. New York State explicitly bans marital status discrimination in adoption law, making it illegal for government agencies to place children with a married couple over a single individual or an unmarried couple. The sole reason I was given that I could not adopt the little boy pictured below was because I was not married.

When I asked the state social worker if I had tried to adopt the toddler before Craig had died, she said that we would have been more seriously considered. I asked if I could get this in an email and she said she was uncomfortable with that. This is not right. This is not just. This is illegal.

Hear My Voice

2009-08-13T19:26:00.007-04:00

Does anyone hear what I hear through my ears?

Do you know I have ears, too?
I hear you deciding my future for me,

but no one's asking me.

Hear My Voice

Children have voices, too.

Hear My Voice

Children have voices, too.

Does anyone see what I see through my eyes?

Did you know I have eyes too?

I already see my life clearly, but no one's asking me.

Hear My Voice

Children have voices, too

Hear My Voice

Children have Voices, too.

Does anyone feel what I feel deep inside?

Did you know I have feelings, too?

My feelings are just as real as your's,

but no one's asking me.

Hear My Voice

Children have voices, too

Hear My Voice

Children have voices, too.

Can anyone say what I say with my voice?

Did you know I have a voice, too?

Before it's too late, please listen to me,

Please listen, won't you listen and

Hear My Voice

Children have voices, too.

Hear My Voice

Children have voices, too.

~a song by Annie Rose~