A place to show my love for my granddaughter who lives with Cerebral Palsy and my passion for painting. In an effort of raising awareness for C.P. every painting brush stroke I make on raw canvas is a stroke of love, as I discretely paint a green C.P. awareness ribbon in every piece. Can you find them?Do you know someone who would like to have a painting done? email firstname.lastname@example.org
Sunday, December 16, 2012
It is with a heavy heart that I publish this post today... Written by Liza Long, republished from The Blue Review I Am Adam Lanza's Mother': A Mom's Perspective On The Mental Illness Conversation In America Friday’s horrific national tragedy -- the murder of 20 children and six adults at Sandy Hook Elementary School in Newtown, Connecticut -- has ignited a new discussion on violence in America. In kitchens and coffee shops across the country, we tearfully debate the many faces of violence in America: gun culture, media violence, lack of mental health services, overt and covert wars abroad, religion, politics and the way we raise our children. Liza Long, a writer based in Boise, says it’s easy to talk about guns. But it’s time to talk about mental illness. While every family's story of mental illness is different, and we may never know the whole of the Lanza's story, tales like this one need to be heard -- and families who live them deserve our help. Three days before 20 year-old Adam Lanza killed his mother, then opened fire on a classroom full of Connecticut kindergartners, my 13-year old son Michael (name changed) missed his bus because he was wearing the wrong color pants. “I can wear these pants,” he said, his tone increasingly belligerent, the black-hole pupils of his eyes swallowing the blue irises. “They are navy blue,” I told him. “Your school’s dress code says black or khaki pants only.” “They told me I could wear these,” he insisted. “You’re a stupid bitch. I can wear whatever pants I want to. This is America. I have rights!” “You can’t wear whatever pants you want to,” I said, my tone affable, reasonable. “And you definitely cannot call me a stupid bitch. You’re grounded from electronics for the rest of the day. Now get in the car, and I will take you to school.” I live with a son who is mentally ill. I love my son. But he terrifies me. A few weeks ago, Michael pulled a knife and threatened to kill me and then himself after I asked him to return his overdue library books. His 7 and 9 year old siblings knew the safety plan -- they ran to the car and locked the doors before I even asked them to. I managed to get the knife from Michael, then methodically collected all the sharp objects in the house into a single Tupperware container that now travels with me. Through it all, he continued to scream insults at me and threaten to kill or hurt me. That conflict ended with three burly police officers and a paramedic wrestling my son onto a gurney for an expensive ambulance ride to the local emergency room. The mental hospital didn’t have any beds that day, and Michael calmed down nicely in the ER, so they sent us home with a prescription for Zyprexa and a follow-up visit with a local pediatric psychiatrist. We still don’t know what’s wrong with Michael. Autism spectrum, ADHD, Oppositional Defiant or Intermittent Explosive Disorder have all been tossed around at various meetings with probation officers and social workers and counselors and teachers and school administrators. He’s been on a slew of antipsychotic and mood altering pharmaceuticals, a Russian novel of behavioral plans. Nothing seems to work. At the start of seventh grade, Michael was accepted to an accelerated program for highly gifted math and science students. His IQ is off the charts. When he’s in a good mood, he will gladly bend your ear on subjects ranging from Greek mythology to the differences between Einsteinian and Newtonian physics to Doctor Who. He’s in a good mood most of the time. But when he’s not, watch out. And it’s impossible to predict what will set him off. Several weeks into his new junior high school, Michael began exhibiting increasingly odd and threatening behaviors at school. We decided to transfer him to the district’s most restrictive behavioral program, a contained school environment where children who can’t function in normal classrooms can access their right to free public babysitting from 7:30-1:50 Monday through Friday until they turn 18. The morning of the pants incident, Michael continued to argue with me on the drive. He would occasionally apologize and seem remorseful. Right before we turned into his school parking lot, he said, “Look, Mom, I’m really sorry. Can I have video games back today?” “No way,” I told him. “You cannot act the way you acted this morning and think you can get your electronic privileges back that quickly.” His face turned cold, and his eyes were full of calculated rage. “Then I’m going to kill myself,” he said. “I’m going to jump out of this car right now and kill myself.” That was it. After the knife incident, I told him that if he ever said those words again, I would take him straight to the mental hospital, no ifs, ands, or buts. I did not respond, except to pull the car into the opposite lane, turning left instead of right. “Where are you taking me?” he said, suddenly worried. “Where are we going?” “You know where we are going,” I replied. “No! You can’t do that to me! You’re sending me to hell! You’re sending me straight to hell!” I pulled up in front of the hospital, frantically waiving for one of the clinicians who happened to be standing outside. “Call the police,” I said. “Hurry.” Michael was in a full-blown fit by then, screaming and hitting. I hugged him close so he couldn’t escape from the car. He bit me several times and repeatedly jabbed his elbows into my rib cage. I’m still stronger than he is, but I won’t be for much longer. The police came quickly and carried my son screaming and kicking into the bowels of the hospital. I started to shake, and tears filled my eyes as I filled out the paperwork -- “Were there any difficulties with… at what age did your child… were there any problems with.. has your child ever experienced.. does your child have…” At least we have health insurance now. I recently accepted a position with a local college, giving up my freelance career because when you have a kid like this, you need benefits. You’ll do anything for benefits. No individual insurance plan will cover this kind of thing. For days, my son insisted that I was lying -- that I made the whole thing up so that I could get rid of him. The first day, when I called to check up on him, he said, “I hate you. And I’m going to get my revenge as soon as I get out of here.” By day three, he was my calm, sweet boy again, all apologies and promises to get better. I’ve heard those promises for years. I don’t believe them anymore. On the intake form, under the question, “What are your expectations for treatment?” I wrote, “I need help.” And I do. This problem is too big for me to handle on my own. Sometimes there are no good options. So you just pray for grace and trust that in hindsight, it will all make sense. I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it’s easy to talk about guns. But it’s time to talk about mental illness. According to Mother Jones, since 1982, 61 mass murders involving firearms have occurred throughout the country. Of these, 43 of the killers were white males, and only one was a woman. Mother Jones focused on whether the killers obtained their guns legally (most did). But this highly visible sign of mental illness should lead us to consider how many people in the U.S. live in fear, like I do. When I asked my son’s social worker about my options, he said that the only thing I could do was to get Michael charged with a crime. “If he’s back in the system, they’ll create a paper trail,” he said. “That’s the only way you’re ever going to get anything done. No one will pay attention to you unless you’ve got charges.” I don’t believe my son belongs in jail. The chaotic environment exacerbates Michael’s sensitivity to sensory stimuli and doesn’t deal with the underlying pathology. But it seems like the United States is using prison as the solution of choice for mentally ill people. According to Human Rights Watch, the number of mentally ill inmates in U.S. prisons quadrupled from 2000 to 2006, and it continues to rise -- in fact, the rate of inmate mental illness is five times greater (56 percent) than in the non-incarcerated population. With state-run treatment centers and hospitals shuttered, prison is now the last resort for the mentally ill -- Rikers Island, the LA County Jail and Cook County Jail in Illinois housed the nation’s largest treatment centers in 2011. No one wants to send a 13-year old genius who loves Harry Potter and his snuggle animal collection to jail. But our society, with its stigma on mental illness and its broken healthcare system, does not provide us with other options. Then another tortured soul shoots up a fast food restaurant. A mall. A kindergarten classroom. And we wring our hands and say, “Something must be done.” I agree that something must be done. It’s time for a meaningful, nation-wide conversation about mental health. That’s the only way our nation can ever truly heal. God help me. God help Michael. God help us all.
Monday, December 3, 2012
Monday, November 26, 2012
Impact Dance Co. did their interpretation of Hailey’s life through dance. For over 5 years now the founder of Impact dance company Meghan Mccaffrey had visions of Hailey Inspired dancers in her head. What a fine job she did! Her choreography was spot on and her dancers did an unbelievable job at manipulating their bodies to capture Hailey’s unique and quirky movements that are characteristic of her affliction with Cerebral Palsy. She even seemed to include some of Hailey’s involuntary movements in a whimsical fashion with style and grace embracing her challenges and raising awareness of C.P. When the dancers first learned that they would be teaming up with Hailey, they watched videos of her everyday life, they included Hailey in numerous rehearsals and they researched Cerebral Palsy. The education they got was life changing and Hailey’s smile, her grace and total sweetness touched the heart of each dancer in the company. Impact Dance Co. or leave a comment below.
Thursday, November 15, 2012
"Team Long Brothers"
By: Jenny Long
My wants are not everything.
My wants are not much.
It doesn't take much to feel my touch.
The touch of my hand that needs you.
Needs you to understand my everything's.
The everything's that exist in my world.
The world of a listener, something not like you, the talker.
A world of stares and assumptions,
Assuming I know nothing of the causal whispers being passed around almost as casually as my faded jeans and sneakers, that fit perfectly over the braces that help my feet work more like yours.
Your wants don't even come close to my needs.
See in your world wants and needs get taken for granted, not here will they.
My needs come before my wants.
My need to be accepted,
to be understood,
So will you want to understand my world more before you need to pass judgment on me?
My want is of that.
For my everything; Cayden
I will fight for your everythings!
Friday, October 26, 2012
Wednesday, October 3, 2012
Thursday, September 27, 2012
The Power of a Little Green Ribbon By Janet Harrold Written for the CP Family Network
Tuesday, September 4, 2012
here. Something Special Magazine can be viewed digitally, or you can have it delivered to your door step for $18.00 a year. They also have a great fb page that often has a bounty of good information and inspiration, so head on over to their page and like them. They also have a newsletter that you can sign up for. They have so many options to make it easy for you to get the resources that you need, this fall issue not only features me, but giving the fact that Cerebral Palsy Awareness Day is September 4th there is a lot of information on C.P. this issue as well as featuring Down Syndrome Awareness Month because that is in October. They also have a contest going on this issue and as so much more. If you or someone you love has special needs, this is a must see publication. A special thank you to Katrina Laygo for creative such a wonderful and informative publication.
Tuesday, August 28, 2012
World Cerebral Palsy Day and submit your idea. Definition of Cerebral Palsy from the CDC Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain.Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.
Tuesday, August 21, 2012
Meet Jack his blog and tell him that Painting for Hailey sent you and show your support and encouragement to this handsome young guy. If you would like to interview here and share your story with others email me at email@example.com
Saturday, August 18, 2012
Friday, August 17, 2012
Tuesday, July 31, 2012
Something Special Magazine! It is a painting of Hailey and I can’t disclose which one, you’ll have to check back soon to see it. “Something Special” is a Magazine that is both a hard copy publication and an online publication. It is a magazine that is dedicated to helping parents who are raising children with special needs by offering resources, giving helpful hints on therapies, vacations, food, just about anything that you can think of. This is a free publication and a well written and informative resource to have. They write featured articles on many topics such as learning differences, behavioral issues, personal care and many feel good and inspirational stories as well. The woman who interviewed me was such a sweetheart and a kind and understanding soul. It’s as if she knew me for a very long time. The magazine covers a wide spectrum of disorders. You can find articles on Cerebral Palsy, Down Syndrome, Autism, Chromosome Disorders, Tourette’s Syndrome and Juvenile Diabetes just to name a few. I am not sure which I am more excited about, the fact that my painting is being featured on the cover of such a wonderful magazine, or the fact that Hailey is going to be featured on the cover of a magazine! As you all know, it is this grandmother’s opinion that Hailey is already the most beautiful girl in the world, I think her beautiful blue eyes should be on the cover of every magazine, because she is that beautiful and her contagious smile just happens to light up all of Boston Massachusetts. Our cover is the upcoming FAll issue, coming real soon. Do me a favor, in the interim, while we patiently wait for it to be published, show these great folks some love and support, head on over to their facebook page, and tell them that Janet from Painting for Hailey sent you! Can you guess which painting of Hailey they chose? Which one do you think is worthy of a cover? If you live in the Georgia area, this magazine is easy to find you can pick one up in Savannah, Pooler, Macon, Atlanta and Charleston.
Saturday, July 21, 2012
-I am a delicate flower...you are the sunshine that helps me grow copyright by Janet Lee Harrold Exceptional Family T.V. EFTV is an online home destination for exceptional families worldwide. It is one of the best online resources I have found. It is a place where you can find useful information, you can learn first hand from other families who are raising children with special needs, and are living the same life and are on the same unfamiliar journey that we are on. The road of uncertainty and trial and error. We help each other, we cry with each other, we smile with each other and most of all, we learn from each other. That is why when Hailey was not feeling herself last week, I turned to my friends over at EFTV for advice. I mentioned on their facebook fan page that Hailey had been lethargic, she wasn’t eating, and she was downright cranky, not her usual self at all. It began to worry me a bit and I remembered the same thing happening last summer. I wondered if it was just the hot weather getting her down. So I posed the question to the 14,000+ friends who make up our special needs community on EFTV. “Does the heat affect your child with C.P.?” and within hours I had more than 27 people tell me that without a doubt, the extreme temperatures totally affect their children. I have to say that the education that we get from one another has been more informative and satisfying than anyone of Hailey’s team of Specialists. I learned that high temperatures, the combination of heat and fatigue can sometimes bring on seizure activities for kids who have C.P. and others cannot regulate their body temperature and have to wear cooling vests. Some kids just can’t cope in the heat, I learned about the benefits of coconut water for super hydration ( though i’m a bit skeptical about that one). Most parents told me they have learned to take precautionary measures and if the forecast says it is going to be above 72 degrees then they cancel any outside activities and stay in the air conditioning. Well, that would have been nice to know, sure wish the doctors would worn us about this stuff.
Friday, June 29, 2012
For becoming educated and learning just what your child needs. Then MAKING sure they get it!
For the many hours spent getting the necessary therapy your child needs.
For being your child's voice, so that they can be heard.
For being the BEST parents that a child can have.
For the late nights and endless hours scouring the internet for information, products and treatments.
For having the guts to try an alternative therapy and coming up with the money to do it when it is not covered by insurance.
For carrying your 40 pound child around even though your back is aching.
For constantly wiping the drool from your childs chin, so to keep it from getting chapped.
For ALWAYS putting your childs best interest first, even though you risk losing your job.
For the ability to make the right medical decisions.
For the dirty looks you receive when your child goes into sensory overload, or even when they just go to the playground.
For the never ending doctors appointments, and the armor you have to carry to get there.
For the equipment that IS necessary even if you have to fight the insurance for it.
For the humility and grace it takes to advocate for your child.
For feeling alone because no one really understands you.
For celebrating every accomplishment no matter how small.
Monday, June 18, 2012
This was a gift for my son...the original photo was taken by Jess over at Boston Baby Photos she is a genious with the camera and if ever you need photos of your family, I highly suggest that you call her, the paintings were done by me of course :) I thought I would show what the process would look like mid way. I actually love the paintings best mid-way, it is my personal preference. Boston Baby Photos
Monday, June 11, 2012
As a grandmother, I think a lot of my concerns about Hailey are valid...I worry about, who will take care of her when her parents are no longer here or able to, I worry about her being bullied because she is a perfect target for bullies, being non verbal and “different” than the rest of the kids, I worry about people taking advantage of her, I worry about how much she does or doesn’t eat, I worry about her quality of life being compromised and not being financially able to get her whatever it is that she needs, I worry about most of the things that every other parent/grandparent worries about, but am I being silly when I worry about her having and making friends that will be there for and with her through thick and thin? TRUE friendship is really hard to come by, and quite honestly if you have a few friends that you are really tight with, friends that have been with you for decades, then i think you should consider yourself blessed. I am very fortunate to have a couple of friends that I have known throughout the years, friends that I know that I can rely on no matter what, friends that I can call on and they too can call on me, and we would drop everything and anything for each other. I have a friend that I met in highschool and even though we are now miles apart (Chrissy) and don’t see each other as often as we should, when we get together it is as if we can still pick up where we left off. that is a friendship that everyone should have. I also have a unique friendship, my lifelong (and I mean all of my 46 years) friend Brenda. Brenda and I have seen each other through good times, and bad times, through births, weddings, funerals and sicknesses, we know each others deepest secrets, we know what’s wrong with each other, without having to say a word. This is a friendship that I do not take for granted, that I know that I am lucky to have. Take a secret inventory of your friends and see how many are this genuine. I am TRULY BLESSED to have Brenda in my life and I know it, I think we have a very rare kind of friendship. I thank God everyday that she is in my life! Hailey is only 5 years old, I’m sure she has plenty of time to make friends, but I worry. After all, how much time does she have to socialize, she has so many weekly therapies, countless medical appointments, feeding issues that make it much harder and longer for her to eat. etc. etc. Not to mention the lack of understanding of her disability that scares so many people away. Despite her beautiful and contagious smile, and charming personality, I think other parents are afraid to invite her over for a playdate Afraid that they won’t know how to take care of her. Keep in mind a play date doesn’t t always have to be a drop-off situation. A playdate can be two moms at the park with all of their children, or moms catching up and getting to know one another over tea while their children are playing together in another room. A play date can be as beneficial for a typically developing child as it is for a child who has a disability. It is imperative that children learn at a very young age that they are all equal despite the different challenges they face. I’ve said it before and I will say it again, “Hailey loves all the same things that another 5 year old child loves” She loves, to play, she just can’t run around, she loves to sing, you just can’t hear her voice, she loves to dance, she just needs a little help, she loves to blow bubbles, but she can’t blow, she can try effortlessly to catch them, and they inevidebly break, just like they break when any other 5 year old tries to catch them. One of her greatest needs is to be understood. If you can look past her disability and look right into her soul you would have a wonderful and fulfilling friendship! I saw this music wall on another blog I know Hailey would love it, I’m not sure that she can do it from this angle, she spends most of her time trolling around on the ground, (really got to get some knee pads to fit her) but maybe I can adjust it a bit, maybe hang all of this cool stuff on the back of a hollow door and bring it outside on the grass when she comes over to visit in the summer time, I think I will paint some of my utensils bright colors! I bet Brody will soon be able to play with it too. “To understand me is about taking the time to get to know me” copyright @-Janet Harrold
Wednesday, May 23, 2012
Impact Dance Co every single dollar adds up, whether it is $1, $10, $25 $100. We appreciate your support.
Friday, May 11, 2012
I've been crazy busy and no time to blog, but I managed to squeeze out a painting...
Wednesday, April 4, 2012
Just a little insight to where my mind goes most of the time.
Tuesday, April 3, 2012
I have recently been contacted to do an interview with Donne Davis a columnist from "Parenting on the Peninsula" (POP) is a monthly journal serving the San Francisco Peninsula and the Silicon Valley whose sole purpose is to provide valuable parenting information for parents of children of all ages. She thought my blog was so beautiful and touching. Isn't that sweet? The publication is both online and in print, however since I am not in California, I can't just walk into the local coffee shop and pick up a copy. To read the interview with me, click on the link below and scroll down to page 6! Then go back and read the rest of the publication.
http://www.ponthep.com/issues/2012/april-shine.pdf Donne Davis also has a great website where Grandmothers Brag, Bond and Benefit. It is called the GaGa Sisterhood It is such a great site, you won't want to miss it.
Monday, March 19, 2012
If it is one thing that i’ve learned on this special needs journey / belonging to this very special and exclusive club. Is that the many families that we have met, believe it or not on the internet, whether we met them networking, blogging, or even on facebook, we have met some of the most very special friends who’s love and compassion knows no limit. Are family is very grateful today for the kindness of A loving family that Natalie met on Facebook. On Sunday we took an 8 hour road trip to Peru Maine to pick up an Adaptive Bike that the Jamison Family so graciously gave to Hailey. The beautiful young girl who formerly owned the bike has the same type of C.P. that Hailey has, she no longer uses the bike and her mom asked if Hailey could use it! We were thrilled. (Thank you Erica). We have been looking for a bike for Hailey for some time now, this has proven to be an EXTREMELY DIFFICULT task. Hailey’s lack of core strength and mixed/low muscle tone makes it impossible for her to sit safely on just any bike, and the adaptive bikes typically cost thousands of dollars. We have been to a few bicycle shops trying to adapt or create our own bike to suit Hailey’s individual needs, but have been unsuccessful. So you can just imagine how happy we were to be given such a wonderful gift.
Friday, March 9, 2012
This Thursday Hailey will become a big sister! Everyone is very excited/nervous, excited/nervous, excited and nervous. Sure i'm excited for my new grandson to enter this world, but also because I am going to be able to spend some quality time with Hailey. I have taken my vacation in ½ days so that I will be able to spread my vacation time throughout several weeks and be of more help to my family (Thank you Richard) I thought I could take advantage of this time off to do some of the things with Hailey that I never have the time to do. For several months i’ve been racking my brain trying to figure out some fun things to do while still incorporating therapy that she needs. Here are some of the activities that are on tap...we have signed her up for adaptive aquatics! Hailey loves to go in the water, and the heated pool is exactly what she needs to relax her tight muscles, only this time she will have a professional instructor working with her, instead of Grammy wading around in the pool. Ever since Hailey danced with Meghan at Impact Dance Co.
Monday, February 27, 2012
Hailey has a new cup and i’m so excited! Something most of us take for granted every single day is the ability to use our tongue, the ability to chew and eat our food, and the ability to drink from a cup. This is something that has always been very challenging for Hailey and for most people who have Cerebral Palsy. C.P. is a mobility impairment that affects the gross and fine motor skills, your tongue uses fine motor skills while eating and drinking, so you may imagine how it can be difficult for her to control her tongue. The ability to suck, swallow and chew is also compromised as well as the ability to speak. There is a famous myth that the tongue is the body’s strongest muscle...it’s not true, but it doesn’t make the tongue any less impressive, or less important. This is the way Hailey initially got her water... sassy grow up cup. No spill, no spout. This cups looks a bit more appropriate for Hailey's age as well. She can experiment with getting the cup to her mouth without the liquid being gone by the time it gets there. Cuts down on her frustration level and hopefully she will get her drinking requirement each time she takes a drink and maybe, just maybe it will help her transition to an open cup.