Music to my ears

Move over Liberace... this weekend Natalie, Tom and Hailey went up to New Hampshire to spend the weekend with Natalie’s aunt Christine. They had a great time at the petting zoo, apple picking, and trick or treating. Christine gave Hailey a gift and this one really struck a chord with me. She gave her her very own Baby Grand Piano! Growing up my family didn’t have much, but we did have music, most of my family were self taught musicians. My father played the guitar and the harmonica, my sister played the guitar and my brother played the drums. Coinsidently his son also plays the drums and my uncle went to the New England Conservatory of music. So it was no surprise when my son Tom(Hailey’s daddy) came home and said that he wanted to attend St. Paul’s (better known as The Boston Boy Choir) where he studied music and learned how to play the piano. He later went on to graduate college as a music major. “When Tom played it was intoxicating to me”, there was a sense of calm when he passionately ran his long slender finger’s up and down the keyboard. Due to her Cerebral Palsy I know that Hailey doesn’t have the dexterity in her fingers to play the piano like her dad, but it sure does my heart good to see her play and respond to music the way that she does. It makes me wonder how many of you have children in "Music Therapy" and if you do, how has it helped your child?

Lantern Festival

I just can’t get enough of quality time spent with my family. Last weekend was the Annual Lantern Festival, such a stress free beautiful night, my husband even skipped out of work for a couple hours and joined us this year. :) as thousands of people walked around the pond with their children dressed in their halloween costumes, proudly carrying their handmade lanterns made out of plastic bottles and tissue paper, with a candle to light the way. It felt like were taken back in time or in a fairytale. It was beautiful to look across the pond in the darkness and see all the lanterns lighting the way. Natalie did a great job helping the kids make them this year and Hailey loves to participate in arts and crafts projects, so it was a win, win for everyone. Her costume this year is a dragonfly, she picked it out herself. She also had quite a good time modeling it while her mother took some great pictures. She looks so animated in these shots, we are not sure if Hailey will walk, but it looks like she is going to fly.
Tell us your fun halloween stories.

Different Points of View

Different Points of View --Cards written for the differently abled in mind and in heart.
These cards are never intended to offend anyone.
Last May while I was looking for a birthday card for Hailey, I realized that what the Hallmark cards had to offer for 3 year old girls were popular and current cartoon characters such as Dora the Explorer, Mickey Mouse or generic cards that displayed a prima ballerina in all her grace and elegance, high on her toes in her beautiful pink pointe shoes. That is when I realized that they didn’t have a card that was a bit more specific to Hailey’s grace. I didn’t see a ballerina in A.F.O’s or a little girl celebrating her accomplishments as she walked through a field of daisy’s in her new walker. So I began to write a line of cards so that when I wanted to give my granddaughter a card for her birthday or a card for encouragement, I could chose a card that was a bit more relational to her.
I began to write text and I am happy with the text that I have written. My drawings however have me a bit concerned. I wanted to paint them in soft demure colors and keep them simple and child friendly. After emailing them to a co-worker I am starting to second guess myself here. I would really appreciate everyone’s honest opinion here before I spend more time, effort and money on this particular project. Above are some images and below is the email correspondence of myself and a co-worker. An example of one of my favorite cards will read as follows.

“When it feels like the whole world is staring at you...just smile”

His Response to my images:
Janet i never want to offend or discourage ..but i expect honest responses when i ask for your reaction so....my first reaction is to be disturbed (obviously the subject manner is sad) 2nd they look juvenile like a kid painted them..however that may be the look you wanted to achieve so there is an innocence to them that's sweet i think you wanted the paintings to say i am handicapped but i am somebody and i can achieve to be what ever i want to be and i am ok and just like you....its ok to look at a person with a handicap on this card or in this world but i guess the reality of it is a bit hard to take...this is my perspective maybe someone with a handicap would be reassured or reaffirmed by an image of someone like themselves...i know these are preliminary drawings and dont necessarily represent your end goal but that was my first reaction i guess the girl and the dog is a bit softer and more gentle to look at...and if she had a smile that was ear to ear i would find it a more pleasing image let me know if my response seems fair.
My response:
Hi,
You never offend or discourage me. I asked for your first impression and you gave it to me. i wanted them too be soft and simple....so they didn't look to harsh. I realize it is hard too see but for a lot of people this is the reality of their lives, even if others chose to look the other way. Your reaction just makes me more aware that these kind of cards need to be in as many stores as poss. If people got used to seeing them more it would help to raise awareness and hopefully blend into the Norm (whatever that is) I appreciate your honesty.

I realize that I am putting my self in a very vulnerable position on this but, i've got to know before I keep investing in this. The question goes out to my "special needs" friends and my "Not So Special" friends (just kidding) Is this something you would like to see more of, or should I throw in the towel?

kicking and splashing

Usually when I bring Hailey swimming she seems to be pretty happy to be in the water. She doesn’t move around as much as I hoped despite all of my efforts in engaging her in the water.
None the less, the warm water is so good for her tight muscles, and so we continue to go.
This week there was a crate of rubber duckies and fishies on one side of the pool. Hailey dipped her hand in the crate and pulled herself out a fish. We played with him and submerged him under the water until his belly was filled with chlorine. Then of course, we dumped the water on grammies head. Not only did Hailey think that this was funny, but she just loved kicking and swimming from one end of the pool to the other and when she was done letting the fish spit all over my head she would line them up next to each other on the wall of the pool, before I knew it, it was time to go and she had 6 ducks and 6 fish lined up in a row and the crate was empty. We had fun and made progress today, I just can’t wait until next week!

Exceptional Family

Well, it’s official episode 2 just started on Exceptional Family T.V.(To link to the video introducing me and the other bloggers)click here and then select "This Week" I am both honored and proud to do my small bit in contributing to their show. I will be writing a weekly blog from a grandmother’s perspective trying to convey the importance that the role of extended family plays in the life of a child with a disability, and also about the fun that Hailey and I have together. eFamilyTV focuses on parents/families/caregivers raising children with special needs. I hope that you will follow me and the other bloggers as we raise awareness and educate the rest of the world about the realities, struggles and triumphs of amazing families raising children with special needs. It helps parents connect with each other through open discussions and share ideas about therapies, equipment, adaptable toys and everyday stories. I have learned so much about Hailey’s disability by reading and speaking with other parents/grandparents who are living the same life. You can too. Pictured above are just a few images of my "Exceptional Family"

"Double Trouble"

You may remember these two adorable twins Ben and Daniel, i've painted them in the past. (they also remind me so much of my own twin nephews Mickey and Orlando when they were that age)Ben has Cerebral Palsy, like Hailey. The first painting I did Cary,(their Mom) from here was touched when she noticed that I put my trademark Cerebral Palsy awareness ribbon over Ben's heart. This time I placed it near Daniel's heart because i'm sure his love for his brother is great. I hope she likes it.

"Her Voice"

Her voice so soft, like a whisper.
Most times even approximate, but none the less
it is sweet music to my ears.
Janet Harrold

Sign of the Week – Please

Sign of the Week – Please

I'm Now Writing For "Kidz Krew"

I have recently joined the “Kidz Krew” and will be writing monthly blog entrees for the site. This is both an honor and a pleasure for me to be able to write for a special needs site. Most of my loyal readers, friends and family know that I mostly write about my granddaughter Hailey who has Athetoid Cerebral Palsy. It is my mission to raise awareness and educate people about C.P. and this is another great opportunity to be able to do that. The Kids Krew contributer’s are all amazing woman who have children with different abilities, who share their knowledge and resources with thousands of readers, some who are veterans in the special needs community and other’s who are newbies and looking for as much information as they can possibly find to help them understand their child’s diagnosis. On this site you can expect to find uplifting stories, poems, songs, activities, ideas, friends and resources, many resources. If you know anyone who may benefit from this site, please send them here I know it will help them, just as it did me.

"The kind words of strangers"

After a very busy week at work, what better way to unwind than to have a sleepover with my favorite granddaughter, I know she is my only granddaughter but secretly she will always be my favorite, I know she will. This morning we went for our usual walk exploring the neighborhood, counting all of the cars, stopping at all the stop signs, smelling all the pretty flowers (o.k., o.k., so I let Hailey pick a few) today is Natalie’s birthday and she wanted to pick a few for her mom, what’s wrong with that? We listened to all the birds chirping and Hailey pointed them out to me each time they flew from the house to the tree’s. I decided to take her to the park up the street from my house. As we were walking by a bus stop a young boy about 10 or 11 years old was sitting on a bench with his dad waiting for the bus, as we casually strolled by the boy said “hi”, I stopped and told Hailey it was o.k. to say hi to him. Hailey smiled and didn’t say anything, the observant young boy asked if she was handicapped. I explained “she doesn’t talk and she doesn’t walk yet, but we are working very hard at helping her do that”, the young boy said you should bring her to Children’s Hospital, they will help her. I told him we do regularly go to Children’s and they are doing their very best to help Hailey. Not satisfied with that answer the boy continued to let me know that his younger brother didn’t speak well and they got him a tutor, and even suggested we do the same for Hailey, In a very persistent manner, I explained to him that Hailey has her own speech therapists and people who are working with her to help encourage her voice. Again, he was still not satisfied with my answer and urged his father to write down the name of the tutor that they used for his younger brother because he now can say juice and that is just one words that were difficult for him to say prior to the tutor, the father took out a pen and wrote something down on a piece of paper and handed it to me, the proud young man said “call him, he will help her to talk I know he will”. I looked down at what the man wrote and it read. Sorry, I don’t know his name and number. I looked at the father and gave him a wink and I thanked the young boy who was so eager to help Hailey. As my day continued, I just couldn’t get the young boy’s sweet words out of my mind. What are some kind words that others have said to you that you will never forget.

Sign of the Week – Wind

Just click on the sign of the week to learn wind!

Sign of the Week – Wind

Family life stories: Advice for families

Family life stories: Advice for families

How to Learn American Sign Language

Teaching your non-verbal child how to sign can really cut down on tantrums and frustration. It can easily replace stress and guessing games if done correctly.
To help build language comprehension you need to pair the sign with a verbal response by doing this they help each other. The sign can act as a verbal prompt. For example: If you say the word car, while giving the sign for car, your child will understand that you expect him or her to make verbal approximations, even if he/she doesn’t say the word perfectly, they may make an effort or an approximation if in fact they are able to. Another thing that I have heard other parents of children with C.P. say is that they don’t teach their child with Cerebral Palsy sign language because they don’t quite have the dexterity in their hands, and though that is most likely true, and it is the case for Hailey as well, you still may be able to adapt a few signs to his/her ability. If it isn’t as perfect as a child who is deaf and has great control with their hands, it’s o.k. You will still be able to understand what they want because they will do it THEIR way. Start out by showing them just two words at a time, keep it simple, chose two words that you wish your child could say, or communicate to you. I think one of the most important signs that you can teach your non verbal child to do is the sign for “hurt” there is nothing worse than when your child is crying and crying and they cannot tell you what is bothering them. If they learn the sign for “hurt” you may be able to narrow it down by finding out if their ears hurt or their throat hurts etc.This is not the easiest sign to learn because your child doesn’t always have a boo boo. You may start out with something like “more” or “eat” or maybe “water” but eventually learning the word hurt can be a life saver. If you are considering sign language for your child as an alternative way of communicating, below is a chart of the alphabet in ASL you may want to get familiar with. As you begin to learn certain words the alphabet will be helpful, but for now, baby sign may work better for your child who is just starting out. Rachel Coleman is a woman who has a child who is deaf and has a child who has C.P. she is an amazing mom and the founder of http://www.signingtime.com/, these are the best c.d.s for teaching your child sign language and the best part is they will have fun while they learn. So come on, give it a try, what do you have to lose. Your determined child just might surprise you!
How to Learn American Sign Language

Our Little Bookworm Loved her first day at school

"Swimming, swimming, swimming in the pool"

Hailey and I tried a new pool yesterday, we love it. We had previously been swimming at a pool that was convienant, but lacked some of the necessary things that would contribute to her much needed aquatherapy. The pool that we had been visiting regularly didn’t even have a proper place for me to be able to lie Hailey down and take her wet bathing suit off. I had to do this on the counter of a sink. This was not good for Hailey as well as the people who needed to use the sink. The showers didn’t work properly and the water temperature wasn’t kept warm enough in the summer months to be beneficial for Hailey’s stiff muscles. The last couple of times I noticed Hailey wasn’t moving around as much as she used to. The water temperature was just too cold causing her muscles to stiffen instead of relax. Warm water is the most beneficial to children with cerebral palsy because warm water relaxes stiff muscles. Cold water can have a freezing effect on muscle spasms, making the task of swimming difficult. You may ask why swimming is such a great therapy for Hailey, because the buoyancy of the water relieves stress normally placed on muscles by gravity. The water also gives her a grander range of motion and coordination, allowing her a chance to build muscles and improve coordination. The sensation of water on the body is good for neurological development.
I decided to look for a new pool to bring Hailey to, and I found it! This pool is handicap accessible, has large stalls where I can now have some privacy and a comfortable place to lie Hailey down and get her dressed, the showers work and the temperature is always 83 degrees. Though we don’t have to use this type of feature yet, they even have a lift to lower handicapped individuals down into the pool!
The rules of the pool are a bit more strict, we have to wear a bathing cap, I thought Hailey was going to flip, but she kept it on and with the cap fitting snug to her head, The only thing that I could see was her pretty little blue eyes bobbing around the pool in excitement!

"Lifes A Beach"

Life’s a Beach

Since the summer has all but come to an end and Hailey will begin school on Wednesday we thought we would do something as a family and enjoy the outdoors while we could. As you may have guessed by the pictures, It was a beautiful day at Nahant Beach. The water was a bit too cold for Hailey’s liking though, we spent more time on the sand than in the water. After a few hours we decided to get something to eat. Hailey was so tired by the time our food came that she began falling asleep sitting in the chair. Her eyes closing every time Natalie put a bite to eat in her mouth. As the waitress began clearing our plates, (Hailey still fighting her sleep, eyes closed, head down, practically face down in her plate) The waitress says “will that be all”? Hailey picks her tired head up...she’s not going to miss this opportunity no matter how tired she is, and just as we taught her to ask the waitress for what she wants, she uses her sign language and asks the waitress for “ice-cream please”. It was the perfect ending to a perfect day.

A Walk in the Dark

Well it definitely wasn’t dark when we headed out after dinner, it was more like dusk. We just had so much fun strolling around the neighborhood we lost track of time. As we went along from street to street Hailey was fascinated with the STOP signs, of course we stopped at every intersection and pointed up at the sign. I said “STOP” and Hailey silently smiled with her pointer finger while thrusting herself back with excitement. It was a perfect night out, someone must have lit a fire because the smell of a burning fire place filled the air. When we approached a quaint little house with a beautiful garden, we couldn’t help but stop there and smell the pretty flowers. I also couldn’t resist picking an orange marigold for Hailey, it just matched her dress perfectly, she held on to that flower the entire walk. As a desperate attempt to go over her colors I thought it would be fun to point out the color of each car, as we walked pass them I would say, “see the blue car” and Hailey would respond in her sweet soft voice “aah” (her interpretation of car) a few steps later I’d say “Hailey look, there’s a red car” she would point to it and say “aah” and before I knew it she was navigating our way through the neighborhood pointing left “aah” then right “aah.” this simple game had become so pleasurable. Hailey really has taught me how to slow down, how to enjoy and appreciate the moment. We were having such a good time together I didn’t want the night to end.

Miley Cyrus - Party in the USA - ASL Song

I love this one! He looks like he is having so much fun!

Well This About Sums it Up!

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

Author Unknown