Mental Illness

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.

Project Love

As you all know, I enjoy painting and since my kids are in Michigan for the month of December so that Hailey can get another 4 week block of Conductive Education. I am missing them like crazy, so i've decided to throw myself into my passion of painting to help me relax and keep busy. Being connected in the special needs community for the past 5 years, i've learned the importance of the simple things, the beautiful things, the personal things. Soo many members of my special needs family love my paintings, they send me emails all the time saying how they put a smile on their face at the end of a challenging day. With this, I've decided to do something called "Project Love" and so far project love has been overwhelmingly successful. I've put it out there that for the month of December I will accept submissions of images that show true love and paint them without any obligation of purchasing so that the recipient can print them out at home, they can make them into greeting cards or share them on fb, blog about them, whatever they want to do with them digitally. I said I would choose one painting a week and paint it. Little did I know the pictures and letters would come pouring in crazy! Now I am having an extremely difficult time choosing because I want to paint them all! The following was a very generous mom, who asked me to paint her children, then changed her plea from painting her kids to painting these two incredible boys. This is her heartwarming story:

"Hi Janet, I was wondering if I could submit a second photo on behalf of a little boy (Christopher). Christopher's mother is a stay at home mom, since Christopher needs full time care. I can't even begin to tell you all that Kelli does for her precious boy. Recently, a lady donated a black lab from her litter, and another lady donated her time to train this pup to be a service dog for Christopher! Christopher was actually going to have his choice of the male black lab, or a female lab. When Kelli took Christopher to meet the pups, the black male, named Buddy, chose Christopher!! A month ago, Buddy was finally to the point in his training that he could go spend some time with Christopher. Buddy's training involved - and continues - picking things up for Christopher, helping to lift Christopher, alert Kelli if Christopher has a need, stay with him at the side of his bed, and to stay with him, as the service dog he is, when Kelli takes Christopher to his various doctors appointments. Not only has this pup been an enormous help to Christopher and his parents, he has made Christopher HAPPY!! She shares picture after picture of the progression of Buddy's training, and of the partnership these two have formed. I would like to submit this picture of Christopher and Buddy, the day they met! This is when Buddy chose Christopher! Kelli doesn't know I'm asking for this. I know this would move her beyond belief to see her boys painted together. Your portrayal of Christopher, with the only friend he's had, will be priceless now, and even more so in the years to come. While I would truly be honored to see you paint my two monkeys, if I had to choose between the two, I'd ask if you could please paint Christopher and Buddy as a wonderful surprise for Kelli. Thank you so much!! Jennifer Boyd

Hailey, a shining star!

Hailey, my shining star! Last night was the night that 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.

The opportunity that Meghan gave to Hailey was also prodigious. Because of Meghan Hailey not only felt included in such a beautiful dance, but when Hailey is in the studio, she feels free, I can see it in her presence, the way she moves her arms to the music, the way she remembers on cue to drop her body all the way to the floor and become part of the dance.

She is totally in her element, as a grandmother to a child with special needs. All I want is for Hailey to be accepted and included for who she is. Last night she was not only included and accepted but she was a shining star! Though every dance performed told a beautiful story, Meghan Is particularly fond of the piece that best explains Hailey’s movements and her C.P. and would love to show her piece to others willing to raise awareness for Cerbral Palsy. She and her company would be willing to perform for elementary schools, organizations and the like. If you know a school or organization that would like to help raise awareness of Cerebral Palsy through dance. Please contact Impact Dance Co. or leave a comment below.

This poem was written by a friend of mine who's son has Cerebral Palsy just like Hailey. In this poem she is writing about her sons (and others with the same diagnosis) She summed it up perfectly, but Jenny Long "Team Long Brothers" My Wants 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, to live, breathe, feel, share, speak, walk, talk, run, love, and WANT. 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! 

Hailey Strikes Up a Conversation!

What’s that you say? Hailey carried on a conversation? With who? How? Isn’t Hailey non verbal? Yes, she is non verbal and yes, she actually initiated a conversation with one of the teachers at school. For all of my typically developing friends and family members, let me pose this question to you...can you imagine, even for one day that you you can’t speak? You are hurting, but you can’t explain to the doctor where you hurt, or you are hungry and you cannot say, “hey i’m hungry, can we have pizza tonight” maybe you know all the answers when someone asks a question, but you just can’t blurt it out, you can’t even write it down. Can you imagine, just for one day not being able to express your feelings aloud (good or bad) How frustrating would that be? Maybe you need help, but you can’t ask for it. How scary? Can you imagine? This is only one of the many challenges that Hailey and so many others face every single minute of everyday. We definitely take speaking for granted. Over the years we have tried so many ways to be able to communicate with Hailey. We learned a bit of sign language, and that was helpful, but Hailey can not really manipulate her fingers, the way that you need to for signing. She does however do an approximation for a couple of words such as water , and ice-cream. All together I would say she has less than 12 words that she can sign or approximate. Every little bit helps to cut down on the frustration level, but the older Hailey gets. The more we think that she should be forming full sentences, and today she did just that! Hailey has a communication device that she uses predominantly at school, this augmentative and alternative communication product is a computer that allows those who are non-verbal or with limited speech to be able communicate with the world. The device has been customized for Hailey, with her family members names, t.v. programs she likes, food she eats etc.etc. At school Hailey has a personal aide to help her, this is a conversation that her aide said she had in the school hallway today! Posted on facebook by Natalie... PROUD MOMMY MOMENT!! Hailey doesn’t like to use her “talker” dynavox with us as much at home as she does at school and we think it’s because we understand her better, but today at school she spotted someone in the hallway that she didn’t know, seeing the puzzled look on her face her aide said “Oh, that’s Mr. Hugh”, the older kids gym teacher. She then went to the page on her talker where her teachers have been uploaded and noticed that he wasn’t there, she went back to a blank page and pushed it towards her aide so she would put his name in. Then Hailey pushing the appropriate icons said “Mr. Hugh I have a brother named Brody” (she formed this sentence herself btw!!) :) and I guess he said “Oh really, nice!” and she said “little brother” then she went to the page that allows her to ask questions and said “do you have any brothers or sisters?” It turns out he does and I guess Hailey got real happy with the response. Just knowing that she can have a conversation with someone she doesn’t even know is just amazing to me!! Needless to say, we were just ecstatic and for one split moment the roles were reversed and Hailey had left US speechless.

Hailey's Dance

For over 5 years now Meghan, Founder of Impact Dance Co.and best friend of Natalie has had visions of Hailey inspired dancers in her head. Within the first few times she met Hailey she fell in love with her. Being the creative dancer that she is Meghan couldn’t help but be inspired by Hailey’s uniqueness, by her quirky movements, her smile, her grace, her total sweetness. She just new that she had to show the world her vision, the way she see’s Hailey. She wanted to open the minds and the hearts of everyone who knows Hailey and even the people out there who don’t yet know her.

It was almost a year ago when Meghan invited us to her studio and showed us what her dancers had been working on. Before that day her dancers had only studied Hailey in short video clips. A dance was choreographed by the short snippets they viewed and I thought it was absolutely beautiful. Hailey in typical Hailey fashion watched their every move with her photographic memory, and to our amazement, after the music stopped and started again, Hailey dropped to the floor and started to copy their moves as if dictating to them how it should have been done. There wasn’t a dry eye in the room, that is except for Hailey who soulfully danced as if she was in charge. The dancers instinctively followed her lead and even tried to “W” sit the way that Hailey’s hip sockets allow her sit. After a lot of hard work and fundraising this magical evening is finally here, you wont want to miss it! The performance is in a black box theatre in with 150 seats for 2 nights. Friday Nov. 23rd and Saturday Nov. 24th both performances are at 8:00 p.m. The Green St Theatre (2nd floor) 185 Green Street Cambridge MA Tickets $20 for seats $10 for mat seating ( Suggested for children and students.) To purchase tickets Email impactdance2@yahoo.com Call 617-997-3527 *Limited amount of tickets available at the door.*

The Power of a Little Green Ribbon

The Power of a Little Green Ribbon By Janet Harrold Written for the CP Family Network

For over 20 years now I have been expressing myself through art. It wasn’t until 5 years ago, when my beautiful granddaughter was born with cerebral palsy, that I started including a green awareness ribbon in my work. The Search for Answers Before Hailey was born, I really didn’t know too much about CP. When we first found out that Hailey had cerebral palsy I felt helpless. I thought to myself, how can I possibly help my family when I don’t know the first thing about her diagnosis? Like so many others, I craved information. I began scouring the Internet every night desperately searching for ways to help Hailey have a better quality of life. I admit that even after 5 years of gathering information like a beaver gathers wood, I still do not know all that there is to know about her diagnosis. But, I have learned a lot more than I ever thought that I could. I have met some of the strongest and most caring people and have built relationships with others who live the same life that Hailey lives. That life consists of love, courage, happiness and often times a life full of physical pain, discomfort, and exhaustion. The challenges she faces every single day are at times overwhelming. Spreading the Message Through it all, Hailey continues to smile her contagious smile and her determination is like no other. When Hailey was first diagnosed, I spent weeks and months crying. After the initial shock of her diagnosis began to wear off, I dried my eyes and decided to pick myself up and dust myself off and vow to never cry for Hailey again. After all, crying wasn’t going to help her one bit. I began writing about the things that I had learned so that others behind me could begin their journey armed with more information than we had as a family. My blog, “Painting For Hailey,” was written to educate my extended family and introduce them to the wonderful little girl that we are so blessed to have in our lives. Raising awareness and educating others about CP became a top priority for me. I wanted to be sure to keep the tone of my blogs very positive. Remembering all that I have learned doesn’t come particularly easy for me. I am well aware that middle age is creeping in; my memory doesn’t serve me as it once did. I find myself leaving notes everywhere so I won’t forget things. I’ve even reverted back to my childhood methods to try and keep myself on track. When I was a child, lessons were easier to remember if they were taught through song or word association. I paired up my encouraging words with vowels. This helped me to remain positive. I constantly rehearsed these words: A-ADVOCATE E- EDUCATE I-INSPIRE O-OBSERVE U-UPLIFT 5 simple words with a positive message. I built my posts around these commandments. Advocacy Through Art The idea of raising awareness everywhere and any way eventually translated into my artwork. I found myself leaving hidden messages of green awareness ribbons in every painting that I painted. At first they were very discreet; they were unobtrusive. Later they had become more blatant. I’ve written the quote, “I am a delicate flower; you are the sunshine that helps me grow,” to accompany the picture shown here. In this piece, you can see the ribbon on the girl’s necklace. Suddenly, this became more of a trademark for me and eventually a game for others. I get emails saying, “I can’t find the ribbon. Did you forget to put it in the painting?” Or they would request that I paint the ribbon in a specific spot. I have also been told of other causes that the green ribbon represents, such as organ donors, mitochondrial disease, leukemia and so many others. Mission Accomplished People are now looking beyond the painting and searching for the green ribbon. A subliminal message, I admit; but an important message nonetheless. This is only a small step in raising awareness for CP, but if each of us take many small steps, who knows how far we may walk together?

Cerebral Palsy Awareness and Something Special Magazine

As many of you may already know, since my granddaughter Hailey was born 5 years ago, I have been painting to help raise awareness for Cerebral Palsy. I am a firm believer in educating others about disabilities. Before Hailey was born I had no idea how to treat others who were “uniquely abled” of course I was never mean to anyone, but I am embarrassed to say that I really didn’t know much about people who had disabilities, I had no reason to, that is until Hailey touched our lives with her warm heart, her fierce determination, her contagious smile and of course her many many challenges that accompany her C.P. I’ve always enjoyed painting, but Hailey is the driving force that feeds my passion. As it says in my biography “ Every brush stroke I make on raw canvas is a stroke of love, I paint to raise money and awareness for Cerebral Palsy. To own a painting by me is to own part of my passion. I am doing something that I love to do for someone that I love. To signify the cause, any recent work will have a green Cerebral Palsy awareness ribbon placed discreetly in the painting. I love that I get emails from people who cannot seem to find the green ribbon that I incorporate in my paintings, it means that the word is getting out, that they are looking, and that makes me happy. Recently I have been put in touch with “Something Special Magazine” This magazine is an incredible resource for families who are living with people who have disabilities. They are based out of Savannah Georgia and have distribution in many locations in Georgia and the Carolinas. The magazine includes local resources, has special features on numerous disorders, such as Autism, Cerebral Palsy Down Syndrome, Chromosome Disorders and Juvenile Diabetes just to name a few. They have articles on learning differences, behavior issues, lifestyle tips and special grandparents. I am honored to say that their latest fall issue has one of my favorite paintings as the cover (it is the painting of Hailey and her mom Natalie, taking just a minute to smell the pretty flowers) I was also interviewed by one of their writers who wrote an extremely nice article about Hailey, myself and our quest to raise awareness. Please view that 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.

World Cerebral Palsy Day 2012

Photo credit Natalie Venezia (C) written by Janet Lee Harrold... September 4th, 2012 has been named “World Cerebral Palsy Day” This is the first time ever such a day exists. There has been and still is a Cerebral Palsy Awareness Month but never before has a specific day been named World Cerebral Palsy Day. This day could help to change the lives of people with Cerebral Palsy (C.P). The theme for this unique day is “Change my World in 1 minute”

There is an astounding 17 million people around the world with Cerebral Palsy and those of us who love someone with the non curable disease knows that C.P. does not only affect that person but also affects their family as well, bringing the total to 350 million people who are closely connected to someone with C.P. In addition to celebrating the day, The World Cerebral Palsy Website is giving people with C.P. and their loved ones, the opportunity to express ideas about what they need to make their life more independent or more rewarding. There is no idea that is too small and no idea that is too big. They are also allowing you the chance to make a video explaining your idea. There will be a voting process on the most popular ideas, from that process the best ideas win. In November they become a reality and then by next year on World Cerebral Palsy Day, the winning products will be launched. Can you imagine the feeling if your idea helped to make a significant change in someones life.

Anyone living with Cerebral Palsy knows how even the slightest feat can make a huge difference in the quality of life. So why not voice your opinion? Or have someone else submit an idea for you. You never know if your idea will be chosen and can help change the lives of so many people around the world. Being the grandmother of a beautiful 5 year old girl who lives with C.P. I feel compelled to submit an idea and at least voice my opinion on a few ways that I think that could possibly help her to have a better quality of life. I’m sure that there are so many things that could physically help those with C.P. but since I can’t speak of these first hand. I thought I would leave those requests to the people who are directly affected and living with C.P.

My request would be more of a plea to educate and really drive home the fact that though there are people who have disabilities, these people are people first and they too have feelings and emotions just like you and I. I think that it should be mandatory in schools to inform and educate those who are fortunate enough to be typically developing about why and how people become disabled, and how to speak and act around people who have a disability. If children learn this at a very young age, then I believe they will be more understanding of others and less bullying and teasing will arise. I wish that all schools promoted inclusion and adopted a buddy system that paired children with disabilities with children who are not disabled, giving both children a better understanding of each other making the world a better place to live, while promoting friendship instead of hardship. This is only one small idea, but I believe it could make a huge difference, not only in the lives of those with C.P. but in the lives of everyone. I can’t begin to tell you how much Hailey has taught our family in the past 5 years, because of her our lives have been both transformed and enriched. Our eyes are now wide open. She has taught us the most valuable lessons about what is most important in life. Just by implementing a couple of ideas in the school system can be life changing for so many of our children, how can we ignore the need and the difference we can make?

If you want to make a difference in someone’s life go to 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.

I Have Cerebral Palsy...so what, i'm still awesome!

Meet Jack

This weeks post is an interview with my friend Jack. Jack is 13 years old and lives with Cerebral Palsy. Jack thought he would try his hand at blogging informing others and raising awareness for C.P. I love hearing from others that have C.P. Although each individual who has Cerebral Palsy is different, I learn so much from them and I hope that you do to. But what really caught my attention about Jack was the title of his blog. “I Have Cerebral Palsy...so what I’m still awesome” I loved the positive attitude so much, I just had to contact him! I absolutely love the title of your blog Jack and I totally agree that you are awesome! Can you tell us how you came up with the title? I want my readers to think I have a positive attitude so that title showed that. I want people to know that if you have CP you can still be awesome. I think you are an inspiration not only to people who have disabilities, but in general for having the courage to write about your life with C.P. your ups and downs, your many challenges, as well as your accomplishments as an individual. What do you hope to accomplish as a blogger? As a blogger, I want to help people with CP and also other disabilities to know that they are still regular people. What made you decide to write a blog??? I decided to write a blog because I was wanting to help people. I also thought it would help me feel better. Because blogging is fairly new to you, let’s let our audience get to know you a little better... tell us a little about yourself. I know you like sports, what is the name of your favorite team? Do you like music? What are some of the things that you like to do best? I do like sports I love the Chicago Bulls and am also a Bears, Cubs and Blackhawks fan. I love almost all sports. I do like music, I like hip hop music. My favorite thing to do is play basketball or football with my friends.I also like to play xBox and iPad games. Jack, for the benefit of our readers can you tell me how your C.P. effects your everyday life? C.P. affects my life in a lot of ways. I can't feed myself and it's very hard to do simple things that other people just do easily like getting a drink or putting on my shoes.

I have read that you are able to speak but can be a little difficult to understand, I know that is true for so many people who live with C.P. and communicating can be very frustrating at times. Tell us about your communication device and eye gaze technology. My communication device is the coolest thing. It actually sees my eyes and knows where I am looking. It is also a computer which is cool. Do you communicate solely through that device or do you also use other methods of communicating? I also talk and people who know me well understand me all the time. How old were you when you first got your cool set of wheels (your wheelchair)? My mom says that I was three when I got my first wheelchair. Jack my 5 year old granddaughter is about to get her first wheelchair, Hailey doesn’t speak so it is difficult for me to understand how she feels about this. I wonder if you could be a voice for the younger children who can’t yet express their feelings on this bittersweet experience? I realize that your feelings could differ from theirs, but It would be interesting to hear and understand from your point of view. I always thought my wheelchair was cool. I liked that I had something that other kids didn't have. Now I wish I didn't need one though. I know first hand the importance of being treated like everyone else, tell me why this is so important to you. Being treated like everyone else is important because I feel like I'm a regular kid. I don't like to be babied at all. I also hate to be ignored. I’d like to thank Jack for taking the time to interview with me, and please head over to 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 harrold.janet@gmail.com

Team Long Brothers "He aint heavy, he's my brother"

Written by: Janet Lee Harrold If you haven't yet seen these boys, then you are missing out on the true meaning of brotherly love. Their story is extremely touching and inspiring! The love they have for each other is obvious and is the driving force that makes them triathletes. Nine year old Conner and his 6 year old brother Cayden work as a team. Cayden is 6 years old and lives with Cerebral Palsy, this may inhibit him from walking and talking, but it doesn't stop him from competing thanks to his brother Cayden who decided to take matters into his own hands so that Cayden could participate in the outdoor activities, instead of watching on the side lines. The strength, courage and determination is amazing to watch as Conner runs, swims and bicycles while pulling and pushing his brother, and the smile on Cayden's face is pure joy! I'm not sure if these young boys know the impact that they are having on others, or if they realize that they are also raising awareness and educating others as they reshape the definition of winning. It doesn't matter to either of them if they win or lose, it matters to them that they cross the finish line together. I may be showing my age when I say I can't help but think their theme song should be the once popular Hollies version of "He Aint Heavy, He's My Brother" See if you agree as you read theses lyrics. Team Long Brothers may not have won the race, but they have definitely won the hearts of so many people across the world. The road is long with many a winding turn that leads us to who knows where who knows when but I'm strong strong enough to carry him he ain't heavy, he's my brother so on we go his welfare is of my concern no burden is he to bare we'll get there for I know he would not encumber me he ain't heavy, he's my brother if I'm laden at all i'm laden with sadness that everyone's heart isn't filled with the gladness f love for one another it's a long, long road from which there is no return while we're on the way to there why not share and the load doesn't weigh me down at all he ain't heavy, he's my brother he's my brother he ain't heavy, he's my brother.

Pairing up quotes with paintings

I am having so much fun pairing up some of the quotes that I have written to the paintings I have created.

Something Special Magazine

Well it’s official, one of my paintings is going to be featured on the cover of 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.

Kudos to Exceptional Family T.V.

-I am a delicate flower...you are the sunshine that helps me grow copyright by Janet Lee Harrold

As many of my loyal readers know, I write occasional content for a site by the name of 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.

To Natalie, Tommy and every other Special Needs Parent out there

Here's To You:
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.

Brody and Daddy

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

Friends, sometimes I worry about the silliest things...

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

Impact Dance Fundraiser for Hailey

I just want to thank everyone who contributed to helping Haileys fundraiser to happen. Whether you dug deep in your pockets and made a cash donation or you shared the information with your friends, or if you couldn't afford to donate but still enjoy following along with our story. I just want you to know that we thank you for your loyal and loving support of Hailey. Meghan Mccaffrey of Impact Dance Co. has worked effortlessly at making this fundraiser happen for her. It is down to the last few days and she is just a couple of dollars short of making her dream come true. Pledging ends on May 30th. So please click on the link to Impact Dance Co every single dollar adds up, whether it is $1, $10, $25 $100. We appreciate your support.

an almost life size painting of beautiful Hailey

I've been crazy busy and no time to blog, but I managed to squeeze out a painting...

I think I need a bit more work on the eye...and maybe on her smile, this painting does not fully reflect just how sweet her smile is but I keep getting asked why I haven't been blogging so I had to put something up to satisfy my loyal readers, even if it is unfinished :)

"No need for words"

Just a little insight to where my mind goes most of the time.

No need for words, I can hear your heart speak to me. It softly reminds me of what is most important, and where I want to be. When I am with you it's as if the entire world comes to a hault. The only thing in the room that matters is you, the slight tilt of your head, your contagious smile. Makes me believe that it is all worth while. They said it would be different, how could they have known, that your smile would change the world. So glad we got the opportunity to get to know you, to love you, to hold you. @copyright Janet Lee Harrold

An Interview with Parenting on the Peninsula

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.

The kindness of others

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.

The idea of seeing Hailey be able to troll around on a bike like other children is heartwarming for me. She was so excited to sit on it. Unfortunately we discovered that Hailey is too small for this bike right now, but at least we have it to look forward to in the future. A very special thanks to the entire Jamison family for their kindness and their generosity. I know Hailey is going to enjoy her new bike as soon as she can reach the pedals! Hailey and Grampy trying to fix the pedals so that Hailey could ride it

Look at her desperately trying to make it work

Well its almost time!!!

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.

I have been emailing dance schools in our area trying to find a class for Hailey, she enjoyed it so much and seemed so comfortable trolling around on the floor, I really wanted her to be able to take a class like every other little girl who dreams of being a ballerina, unfortunately, I couldn’t find a class that was willing to take her, I finally contacted a woman who owns a dance/gymnastics school and she has decided to take Hailey in one day a week and do some creative movement type things with her privately. Although It isn’t exactly what I was looking for, it is still very exciting (wait til’ Hailey see’s the trampoline, she’s going to love it)! I believe that everyone should have the opportunity to dance and feel the music.

I’ve also been thinking about some crafty things, I believe that being creative is very therapeutic, and since Easter is just around the corner. I have a couple of Easter projects in store as well. I found this wreath on Pinterest and it got me thinking...

even though Hailey won’t really be able to do a craft that is so detailed, it sure will be fun to dump a box of Easter accessories, pastel eggs, ribbons etc. on the kitchen table and she can pick out what she wants me to glue on, tell me where to put it and when it is complete, she will be proud that she helped create this masterpiece and I hope it will make her smile everytime she goes in the front door. I also found this on pinterest... I know, I know, I actually hate these tacky egg tree’s myself, but it isn’t about me, I actually found myself outside today looking for the perfect branches, so that Hailey can hang eggs from each one and be proud that she created this too.

I have been wanting to try music therapy as well, Hailey really responds well to music, she loves playing the piano, and visiting her fathers studio. I just know she would enjoy it. It is so difficult to find the right balance, we have to constantly remind ourselves to just let Hailey be a little girl. So, I hope that these therapies are more fun than some of her other therapies.

" Between the earth and sky above, nothing can match a grandmother's love.

Sassy Grow up Cup

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...

Then her sucking got a little better and she was able to drink from this cup...It is the "Platex Lil Gripper" because Hailey also has trouble holding onto things the handles were key here and also the straw to help her with her sucking motion, the straw was also made of very hard plastic which was important so that it didn't constantly collapse like other flimsy straws. She used this cup for a long time. The problem was when Hailey tried drinking from this cup, often times she couldn't seem to concentrate on tipping her head back, so her head was always in the downward position, and when she sucked up, the water just kind of fell back out of her mouth

But now she has this cup. It's the 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.