"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.