Tyler Perry Comes to the Rescue for Woman with Cerebral Palsy

I was happy to stumble across this story.  The original article can be found here  but I found it on Cerebral Palsy Family Network.

People are good.

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 Georgia woman with cerebral palsy is getting some help from a celebrity filmmaker after he saw a Channel 2 Action News report about her van being stolen.

Atlanta-based media mogul Tyler Perry called Channel 2 and said he wanted to give Alicia Day a brand new van, just minutes after seeing her story air Monday afternoon.

The family of the 24-year-old said someone stole her specially equipped van out of their driveway sometime Sunday between 7 p.m. and 9 p.m.

Day, who’s in a wheelchair, had no idea how she would get around. Despite her disability, she told Channel 2′s Diana Davis she prides herself on trying to be independent, working part-time as a greeter at Home Depot. Her mother, Hannelore Day, also relies on the $60,000-van to take Day to work and to doctor appointments.  But now transportation is no longer a concern thanks to Perry, Day said.

“My mouth just dropped to the floor when I heard his voice,” Day said about her reaction to Perry’s call.

Her father, who answered the phone couldn’t believe it was Perry.

He said, “Excuse me, who do you want to talk to? Who is this now?,’ Day’s mother said.

Her mother said she didn’t realize the report about her stolen van would make such a difference.

After seeing the report, the Home Depot, is also pitching in. Day’s co-worker donated $5,000 to help with her medical expenses. She’ll meet the company president Friday.

As for the missing 2000 Chrysler Town and Country van, it has DeKalb County handicapped plates with license No. DP0229.

Let's Go, Matt! Let's Go!

 

Matt has Spastic Cerebral Palsy, but opted to run in Field Day at Colonial Hills Elementary School despite being given the option to sit it out and despite the incredible challenge of his disability. What transpires is a boy who is filled with determination and a school of children who spontaneously come together and inspire Matt and everyone of us to do and be better.

Bamboo Brace

I got this email from Sue of Professional Therapies, oh, about two months ago. I finally got around to taking a peak at the information and was thrilled at what I found! Read this over and see if this might help your kiddo or any of your friends and spread the word!....

"My husband and I are both physical therapists with a pediatric practice in Salt Lake City. About 10 years ago my husband (who is NDT trained) felt there was a tool missing to help him treat children with cerebral palsy and over time (and many prototypes) we developed a pediatric elbow brace called The Bamboo Brace that we manufacture locally.

"Although we originally developed The Bamboo Brace for kids with spastic hemiplegia type CP we soon realized it's success in using it for children with Rett Syndrome, Brachial Plexus Injury, sensory disorders, global motor delays, etc. Our brace is unique because although it promotes extension at the elbow it comes with 5 different flexible and interchangeable stays that adjust to varying amounts of spasticity/instability depending on the individual child's needs. The above link will take you to our website for more details and information on how it works and who can benefit from using The Bamboo Brace."

About the Bamboo Brace

Bamboo Brace reviews

Bamboo Brace on facebook

Dad, Look What I Can Do!

I know it's unlikely that any of you haven't already seen this video, but I had to share it anyway. :)

"A boy with cerebral palsy was told he'd never walk, but did just that when he saw his returning Marine dad."

The Most Beautiful Things

I was so grateful Jocalyn shared this trailer and film on her blog. It truly inspired me for many reasons, so I thought I'd share it! Here is the trailer and the actual, full film. Truly amazing.

Rollin' With Zach

Official Trailer: Rollin' With Zach

Zach Anner is obsessed with travel. In Rollin' With Zach, he takes an authentic and often humorous approach to seeing the country, as he hosts his own half-hour travel series. Zach may have cerebral palsy, but that's never stopped him! In every episode, Zach explores a new city and conquers his "top five" list for the destination.



In season one of Rollin' With Zach, he travels from coast to coast, visiting Los Angeles, Chicago, New York, San Francisco, Las Vegas and Portland. Each episode is filled with humor and emotion, as Zach meets new people, indulges in his favorite treats, and attempts new and exciting experiences he never thought possible! From surfing to sailing, rock climbing to water-skiing, he challenges himself to try the unexpected, and at times - the seemingly impossible. And when things don't go as planned, Zach embraces the problem with his sharp sense of humor and a positive attitude, because travel is an adventure and sometimes you just have to "roll with it!"

Rollin' with Zach will premiere with back-to-back episodes beginning Monday, December 12 from 8:00 - 9:00 p.m. ET/PT.

Diagnosis

If your child has been diagnosed with Cerebral Palsy, then this video is worth watching.

Parents' Rights

By Jenifer Simpson of UCP


Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.


However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.


This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.


Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.


You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.


The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.


Anger


Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.


You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.


Being Sensible


Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.


If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.


It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.


Keeping Things Private


In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.


One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.


Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.


Persistence as a Way of Life


Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.


There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.


Giving Up Is Okay as Well


Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".


The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.


Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.


Often others do not understand how profoundly exhausted a parent may become or how few choices there are.


Setting Limits on Expectations


There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.


I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.


Getting Annoyed With Your Child


There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!


Having Fun

You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.


I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.


Being Unenthusiastic is Part of Life

No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.


Taking Time Off or Having a Life

As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.


Being the Expert-In-Charge

You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!


In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.


As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.


And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.


Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.


Keeping One's Dignity

You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.


Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!


Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.


None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!


Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.


© United Cerebral Palsy

What I Wish

Guest post by Shannan of The Hoffman Family. Thank you for sharing, Shannan!




When Kate was about 6 months old, about two months after we initially learned of her challenges we would face, I remember taking her to an appointment at the Opthamology department at Primary Childrens Hospital. We were waiting in the waiting room to go back for our appointment. There was a family there, a Native American family that had driven about 5 hours up to the hospital for an appointment with their severely disabled daughter. She was probably about 8 years old, in a wheel chair, it appeared she was unable to communicate, had impacted vision, had her feeding tube pump hooked up, and seemed to be unable to move any of the parts of her body. I remember holding Kate and wondering about what our future would hold, would it be similar to this family? I saw all of the stares from others in the waiting room. As the room cleared out, and people were called back for their appointments, I heard the father mutter to his wife “They should just take a picture, it would last longer.” He was obviously upset by the stares and the whispers about his daughter.

Fast forward two and a half years later. As time has gone by and Kate has grown, it is now more evident than ever that something is different about her. Last night we went to dinner. We haven’t used Kate’s wheelchair much outside of church, since she still fits well in her umbrella stroller. We took her in the stroller. We looked almost comical, Ryan on his crutches, me struggling to push Kate, carry Eli in his car seat, and Maren struggling to get in the restaurant and sit down at a table. About halfway through dinner Kate started to fuss and Ryan had to get her out of the stroller and hold her while he ate. I couldn’t help but notice all of the stares from people in the diner, some of them curious, some of them sympathetic, some of them uncomfortable. It’s something I am used to now. It’s not uncommon to walk around with her in her wheelchair when we do use it and see people either avoid eye contact or trying to quiet their children who ask what’s wrong.

It doesn’t upset me like it did at first. If anything, it has made me more thankful for those who aren’t afraid of Kate. There are a few places that I feel very safe taking Kate. One is our ward. They are used to seeing Kate in her wheelchair and many of them come up and talk to her, touch her, get right down at her eye level and are very kind to her. Another is with our families. Kate’s cousins are used to her, they love her, they love to sit with her and make her smile. And the last place is probably at Primary Childrens. When you walk down the hall there, the doctors see her and they always smile and address her as we walk by.

It makes me thankful for acts of kindness. There is a sweet couple in our ward who have a granddaughter with disabilities like Kate’s. They always ask if they can walk her around the hall in her wheelchair when she gets fussy. Their faces light up when they see her. It’s not forced, it’s genuine love that they have for her. I appreciate that so much. It also makes me thankful for kind mothers who seem to know what to say when their kids ask what is wrong with Kate. We were at a party a few weeks ago and a friend told her daughter that Kate was extra special so her daughter knew to touch her and talk to her with extra kindness. I watched this little girl sit by Kate and stroke her hair and it just made my heart melt. This child could see the person that was inside of this little body.

What I wish is that others could all see in this precious child what we seen in her. There is this amazing little spirit trapped inside a body that won’t function. We get glimpses of this little personality every day. I have no doubt of the perfect little person that is in there. I have been thinking about what I wish could happen in our lives. I wish everyone felt comfortable enough to love Kate as much as we do. I wish everyone would feel okay touching her, talking to her, feeling her spirit. I wish people wouldn’t have pity on us, because we certainly don’t have pity for ourselves. We know we are the lucky one who gets this little perfect spirit in our home. I wish that all people could feel comfortable asking me questions instead of shying away or being uncomfortable. I know that is something that probably won’t happen all the time, but it’s my goal to help others recognize what a truly beautiful person my daughter is, inside and out. I like to sing the song “When you’re smiling the whole world smiles with you” to Kate because it’s true, when she smiles, I really think it makes people happy. She is such a blessing to us.

Awareness

(Inside Text..."Hope Your Holidays Are Special"

Nobody likes to be talked down to or treated like they are invisible, but it happens everyday
to people who have disabilities or use wheelchairs to get around. It is not typically done on purpose, but is often because of the lack of knowledge or lack of interaction with someone who has a disability. More often than not when you first meet a person who has an obvious disability, maybe they are in a wheelchair, or maybe they are blind or have vision impairments. You become a bit uncomfortable, you are not sure what to say. Sometimes pity, fear of the unknown, general awkwardness and a lack of understanding makes you shy away from being cordial.
One of the ways to get past the social awkwardness is to know how to act or what to do in an unfamiliar situation, so educating yourself and others about disability is very important. I think it should be started at a very young age. I wholeheartedly believe in inclusion.
Inclusion is part of a much larger picture than just placement in the regular class within school. It is being included in life and by using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation. It is my hope to see people like my beautiful granddaughter who lives with Cerebral Palsy be more accepted and understood by society. I think I speak for most people who are touched by someone with a disability, when we see things in stores, such as Barbie in a wheelchair, or the occasional book that explains to children that being a little different is o.k. that they are people who are accepted by others and they are people just like you, who have feelings just like you, and they have a purpose in life, just like you do. That is why I decided to design a couple of Christmas cards that show children enjoying themselves at Christmas time, opening gifts and helping to decorate the Christmas tree. It is my way of raising awareness and acceptance. If I can get these cards out for Christmas, people will send them across the miles to their family and loved ones embracing and accepting disabilities and soon, we will be spreading awareness all around the world!

If you are interested in these cards, please contact harrold.janet@gmail.com
Orders are being taken through October, cards printed on November 1st and in your home by Thanksgiving.

Even More Adaptive Costume Ideas

One of our readers, Leanne, saw our previous adapted Halloween costume posts and reached out to share some more ideas with us! Her 11-year-old son, Nathaniel, has Spastic Diplegic Cerebral Palsy and, "is a ray of sunshine in our lives."

We have always incorporated Nathaniel's wheelchair, wagon, or even electric scooter in his costume.






The most special costume to us is the tank. My husband Larry made that for him in 2008 before he was deployed to Iraq.




Thank you for sharing, Leanne!

If you missed our previous costume posts, be sure to check them out here and here. Or if you have any more ideas to share, please email us with pictures (kidzorg.blogspot@gmail.com). Halloween will be here before we know it!!!

Just A Little Reminder

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.

So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.

As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too.

Always be aware of the impact your words can have on others.Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

The Masterpiece

A beautiful poem written for Kendall of Kendall's Hope
by one of her Special Education teachers.

I know this will make your day, so enjoy....

There’s a tiny piece of heaven who will breathe Earth’s air tonight
She’s the gift you prayed for when you prayed with all your might.
Straight from God’s own hand, a vision of His heart
Flawlessly designed by angels; she’s a perfect work of art

She’ll have mommy’s soft skin and daddy’s button nose
Perfect in every way from her head to her toes.
With big brown eyes and a dimpled chin
Curly brown hair and a sweet impish grin

What’s that you say…her legs are not strong?
Oh no, God said, you’ve got it all wrong
She will dance in your heart and soar with the wind
In her own time, you’ll be amazed at the races she’ll win.

Her eyes... you say, they cannot see?
But, she sees past the sadness and into the hearts
Of people who love her and make her a part
Of the beauty around her that she’s felt from the start.

Her voice is silent and you can’t hear a word?
Yet, she sings with a rhythm of a soft fragile bird
She speaks to your soul and whispers her love
On the wings of an eagle, with the grace of a dove.

A child so precious, and uniquely your own
Chosen by God, a gift from His throne
A little piece of Heaven meant all along
To fill your life with her strength, her sight and her song.

For Kendall Briggs
With love, Terri Limon

Sarah's Story

by Lesley of My Morning Glory

Sarah is my third child. The icing on my cake- as they say. After two boys it was exciting to be having a girl. The boys were 7 and 11 when Sarah was born. I had all available prenatal testing and she passed with flying colors. I was a single parent and wanted to be prepared in case there were to be issues. But it appeared all was well.

Sarah arrived one week early at 8 pounds 8 ounces. Very easy delivery after an uneventful pregnancy. She appeared healthy and I took her home 2 days later. No immediate signs of the troubles ahead.

The first warning sign was at her 2 week checkup. She had not gained the appropriate amount of weight, in my opinion. The pediatrician thought she was fine. I was breastfeeding and thought maybe with the 2 boys and running around my supply was low. Or maybe whe was having trouble nursing as she would frequently pull off to catch her breath. It was like she couldn't coordinate the sucking/swallowing thing. At any rate, whatever the reason, I went cold turkey to formula bottles. And then she gained like a champ. She still pulled off a lot but got much more nourishment through the bottles.

The next sign was at 3 months when I took her for her first portrait session at the photographer's. She could barely hold her head up to prop on her elbows, like the boys did at that age. Then she didn't roll over till 6 months, then she couldn't babble unless the bottle nipple was in her mouth, then she didn't sit independently until 10 months, she could not crawl on all fours or pull to stand or use a pincer grasp. Basically, her gross and fine motor skills stalled at about a 7 month's old level. Which is where they remain today. She is almost 15 years old now.

And where was the medical community in this? They were not quite sure what was going on with Sarah. The neurologists had no answer. She was given the diagnosis of CP "for insurance purposes" but we knew that wasn't it. She continues to hold that diagnosis today purely for the insurance.

Some of Sarah's issues seemed to get worse gradually over time. She lost the ability to hold a cup and drink out of it, the ability to pull herself along on her belly, the ability to babble, the ability to finger feed. She lost them so slowly I almost didn't notice it.

At the age of 4, I remember discussing with her physiatrist the possible diagnosis of a cognitive disability. Her physiatrist disagreed with me and said Sarah more closely resembled a child with autism. So she was seen by an expert in the field, who said Sarah only had features of the condition, not enough for a diagnosis.



At this point I had a darling little girl with atypical cerebral palsy and features of autism. And it remains official to this day.

Every few years I take Sarah to a geneticist to review any new discoveries in the chromosomal world. She is tested for this or that but nothing has been found abnormal in any of Sarah's testing.

Sarah's situation most closely resembles Rett Syndrome. I had stumbled upon a support group on the internet 10 years ago. This group was for the parents of undiagnosed children that appeared to be a mix of Rett and Angelman Syndromes. Sarah fit right in. Even though she tested negative for both. As the years went by, she swayed more to the Rett side where she still sits today. She cannot walk, talk, feed herself or change her position. She is legally blind. She is full care in every possible conceivable way and then some :)

I think of her as affected by Rett Syndrome. I belong to Rett Syndrome support groups. She is followed by the RS department at Children's Hospital in Boston. She continues to test negative for it and she is retested every few years as the science improves. It is through other Rett parents that I learn how to manage issues with Sarah. They are an invaluable resource, offering encouragment, ideas and support. I have gained confidence in her care, learned to think outside the box for her schooling, and discovered how smart Sarah is.

So that's the medical side of things, which really is not Sarah's story, in my opinion. Those are just the facts. THIS is Sarah's Story:

Sarah is a gift. I know it sounds cliche, but there is no other way to say it---she is a jewel, the best thing that could have happened to our family. I cannot imagine how we could possibly have landed such a wonderful child. I felt this from the very beginning. I just knew from early pregnancy that there was going to be something glorious about this little person. And, eventually, no matter what I was told about the severity of her limitations, I just didnt care. It didn't matter. She was awesome just the way she was and I was so grateful to have her.



I feel privilged to be her mother. I am thrilled to be able, in this lifetime, to have the chance to experience raising both 'normal' children AND a special needs child. Not everyone gets that opportunity. I have no desire to change her or 'fix' her. I'll take her just as I got her.

My sweet girl.



The funny thing is, it is exactly the opposite of what most people think. I have found that the general public looks at Sarah as a hardship, a burden, that I must have extraordinary strength and endurance to take care of her, that I need a God's blessing to get through it and to cope with the calamity in my life. I see pity. I hear: 'I dont know how you do it'.

Well, if I could shout this from the rooftops, I would:

I have already been blessed... WITH THIS CHILD. She is delightful! We cannot do enough for her! She brings happiness! She brings joy! She brings laughter! She brings lessons! She brings contentment! She brings peace! She brings simplicity! She enriches our lives! We do not cope, we savor! She is a positive in our lives! We are lucky! We are grateful! It matters not a bit the things she cannot do! We learn from her!... Surprise, everybody!

The thing is, we are not teaching Sarah, she is teaching us. And I share her with whomever shows any interest. People need to know these children are not tragedies, they are amazing, wonderful, inspiring people, just the way they were born. There is nothing 'wrong' with them. They are perfectly themselves. These kiddos give more to us than we will ever be able to give to them. I want everyone to know. I want Sarah to have the opportunity to give to them, to show them another way, to challenge their view.

Because that's what she's on this earth to do. Teach.



And that is Sarah's Story.

A Special Welcoming Committee

Retrieved from Yahoo News.

When Prince William and Kate Middleton arrived in Ottawa Thursday, they were treated to more than just a typical welcoming party of politicians and local dignitaries.

Waiting on the airport runway was a dapper young man in a purple dress-shirt who happily handed Kate a bouquet of flowers while she leaned in to chat with him in his wheelchair.



His name is Kellen Schleyer, a nine-year-old from the Ottawa area. He's a fourth-grader from St. Jerome Catholic School, where his classmates couldn't believe he was going to meet the royal couple.

"Everybody was like: 'Are you really going to meet them?' and I say 'Yes! Yes! Yes!" Kellen told local Ottawa radio station CFRA.

He was selected by Ottawa Mayor Jim Watson as one of two children who would "represent the future" of the Ottawa community at the historic event. Mayor Watson met Kellen at the opening of a local community centre, and asked him if he'd be willing to join him when he met the couple on June 30.

"He's a very bright young boy and very active in his community, he's in the choir and plays sports," said Watson to the Ottawa Sun. "I thought he would get a kick out of meeting (them)."

Kellen is restricted to a wheelchair for much of his mobility due to his cerebral palsy, but that doesn't stop him from remaining upbeat and active. When not greeting royals, he switches from wheelchair to bike for his commute to school and has spoken on a children's program about what children with disabilities can do.

Adding royal greeter to the list of things Kellen can do has the boy very excited. In a radio interview with CBC Ottawa, he explained how happy he was to be chosen, and was especially thrilled to meet Princess Catherine. Kellen's only worry was figuring out what to call them, debating if "your greatesty" would do.

As if meeting Will and Kate wasn't special enough, Kellen lent his own special touch to the occasion - he picked out the flowers for Kate himself, selecting mostly purple blossoms, his favourite colour.

Conductive Education

The Conductive Learning Center
Grand Rapids Michigan

Well friends, I have to say...The four week experience that we had at the CLC just may have changed our lives and our outlook on life forever! The people who work there are so dedicated and obviously devoted to the children who attend the center. Whether they are there for one session or if they are attending full time, the approach is the same and the goal is to promote independence. It concentrates on developing and improving gross motor skills such as learning how to sit, walk and hold on to large objects, as well as fine motor skills including learning how to hold a pencil and eat and drink. Many parents are surprised to see their child sitting on the potty for the first time.
The curriculum strategies are tailored to the needs and abilities of each student, many who have Cerebral Palsy, Spina Bifida and other Motor Challenges.
The Conductors are committed to teaching students to reach beyond what is expected. They include music and singing into a structured routine making it a fun and positive experience, so they can learn the necessary skills needed to live a more independent, confident and fulfilling life.
You can only imagine our excitement when they had Hailey up on a walker (with assistance of course) after only being there 3 days! We wholeheartedly agree with the program and want to see Hailey attending on a more regular basis. I’m not sure if that means moving to Michigan, or making the trip there more frequent. It is not even out of the question to open up a Center here in Massachusetts. Either way I have to get more aggressive in my fundraising efforts. Unfortunately Conductive Education is not covered by insurance.
Friendships are different now than they used to be, quality instead of quantity. The entire community welcomed us with open arms. The parents, the staff, and the program director were all helpful and inspirational. We felt a complete sense of belonging and unity. Families who understand, people who have never met us before opened their home and their hearts to us. It is the bond we share as families of children with special needs. Parents who have walked the road before us paved the way. The same families who have learned not to waste their precious time listening to rude comments, awkward stares and low expectations from Doctors.
To all of the Parents and Educators at The Conductive Learning Center in Michigan. I have just one thing to say. BRAVO BRAVISSIMO!

In Case of Emergency

What would you do if you had a medical emergency and your special needs child or grandchild is in your care? I definitely hemmed and hawwed over writing this post. I tend to be a more quiet person
and like to keep things to myself when I get sick. I really didn’t want to announce it over the internet that I had, well, lets call it an episode. But the fact remains that an emergency can occur when you are alone with your child who is non verbal or unable to let someone else know that you are in distress? Hailey is my hero.

While I was looking forward to having a well needed quality Sunday spent with my beautiful granddaughter, things went terribly awry. We were shopping at our local B.J.s when all of a sudden I had an overwhelming feeling take over me. The first thing I thought of in the few seconds I had before I went down for the count was where can I go in the store that Hailey will be safe. I didn’t have time to explain what was happening to a store clerk nor did I have time to explain Hailey had a disability etc. I couldn’t even muster up the strength to get my phone out of my bag. I headed for the ladies room, I thought if I can get to a confined space and call 911 or my husband I can tell them exactly where I am and Hailey won’t be in the carriage or able to escape. (she doesn’t walk but she can scoot all around the floor) As I was pulling my phone from my pocketbook my girlfriend was calling in, I had enough breath in me to say I am at B.J.s very sick in the bathroom and Hailey is with me. Brenda was coming from across town and I thought it would be quicker to call my husband who was less than 10 minutes away. I needed him to get here so that he could take Hailey. Moments after that phone call, I could hear 8 woman coming and going in the stalls next to me (I tried to call for help, but my voice wouldn’t come). I couldn’t bang anything to get the attention of others, I was loosing consciousness rapidly. I am typically a very strong and healthy individual but something happened to my nervous and circulatory system that caused my blood pressure to drop critically low 70 over 50 and my heart rate and pulse plummeted also. Anyway to spare you all of the gory details, Hailey began to crawl away and escape underneath the door, I got down on the floor and said “you get back here and stay with grammy” she crawled over to me and stayed with me. I wanted to be able to touch Hailey and reassure her that grammy would be alright. Laying down immediately brought the blood back to my brain and I could feel myself coming back. That is what saved my life. Hailey stayed right with me. Finally a woman saw me on the floor in the handicap stall and said “are you alright” I said “no, I’m very sick, I have my granddaughter with me, she is non verbal and she has Cerebral Palsy, she cannot walk, I need her to stay with me until my husband comes but you need to call an ambulance ” Unfortunately the roads had been blocked because of a Parade and 45 minutes passed before my husband and best friend arrived to take Hailey. The ambulance got through but I couldn’t leave Hailey until I knew she was safe with a family member. Hailey was so brave and she stayed with me on the floor for at least an hour. I believed she saved life. If I had been at home when this occurred chances are I would never had gotten on the floor. Looking back I may have been able to do things a bit differently but when you have a medical emergency there is not much time to think.

I wrote this because I know a lot of parents are home alone with children who have disabilities, we never expect that something will happen to us. But if an emergency occurs, what precautions do you have in place to keep your child safe?

Dayton's Legs

Cerebral Palsy & Certain Proof

Today is Cerebral Palsy Awareness Day.
If you didn't read the post, Dear Cerebral Palsy, by Mo, then go read it!

It's poignant and lovely.

I also wanted to share this video with you.
I believe it captures the essence of Cerebral Palsy.

Dear Cerebral Palsy

Guest post by Mo of Unexpected Lessons. (Thanks, Mo!)

March is your month. Cerebral Palsy Awareness Month. During this month, most state your facts and statistics to increase one’s knowledge of who you are and what you look like. Some may choose to bring to light your darker side, the hardship you cause and the pain you inflict on innocent bodies while others may choose to spread what a fortunate circumstance you have been to the lives of those who know you personally. I choose to take the bad with the good because without one there is not the other. No matter how I view you on a daily basis, no matter how angry I am to see your hindering ways within my daughter, or how joyful I am of her triumphs over you, I am very aware of you Cerebral Palsy…. more aware of you today than I ever hoped to be.

It’s been 3 years now since you felt the need to make yourself known and grace my innocent daughter with your life long presence. I’ll hand it to you - you had us sitting on rock bottom after our baby’s diagnosis but only for little awhile as this small family of three was bound and determined to not be beaten. More importantly, the child you chose to inflict with global delays, right-sided weakness and spastic muscles has been thriving and kicking your butt ever since she met you.

Thanks to you, it’s taken a team of professionals to help Rob and I raise this girl of ours. We could have never begun this unforeseen journey on our own. We count this as part of your good, just one of the many blessings in our lives. Because of you, we have met the most sincere and compassionate therapists, doctors, teachers and everyday strangers who go out of their way to make life as normal as possible for our daughter. She has an additional 5 doctors over the child who lives a life free of you, not to mention the 6 therapists that manipulate and train her mind and body to conquer you. We are and will be forever indebted to them all.

Cerebral Palsy, because you have stolen some of the simple pleasures from Rob and I that come along with raising a typical child, you have in turn given us intangible things that are far more valuable and greater than us. Among those things, we learned very quickly to document life and appreciate movement. I will forever hold vivid memories of the first time my daughter was able to look at me clearly with both eyes and smile from behind the teeniest pair of pink glasses. I recall the first time she rolled from front to back and who was with me at the time it happened. I remember her first unassisted sit with Rob seated behind her ready to catch her fall. I remember her promising first reaches for an object with her right hand during one of her first OT sessions at just 7 months old. I’ll never forget her first claps that were captured in Christmas pictures just months after her first birthday. I remember the nerve-racking ride home from her eye surgery and witnessing the first time she looked to her right with both eyes finally aligned. I can still see her first belly creeps across the floor and her first haphazard steps with her walker when I stop to remember and I’ll never, ever forget her very first independent steps. Every goal and milestone met will be etched in my memory so long as I live as each one had to be taught and practiced over and over again until successfully mastered. In this house, dancing and excessive cheering is not reserved for just sporting events and birthday parties but rather for the tiny miracles that have happen within our own living room.

Cerebral Palsy, you have also taught us to seek the silver lining in every situation. You play an unfair game with the muscles in her little body, including those that control her eyes. However, those glasses that she so sweetly wears on her face are there because she can see, not because she can’t. The orthotic on her right foot that seems cumbersome at times and often limiting is only a daily reminder that we have a daughter who has been blessed with the gift of mobility. Her speech delays have taught us to listen with our eyes and hearts as her actions often speak louder than her utterances and unclear words. The perspective you have given us of this life will always lead us to the silver linings, no matter what.

Because of your unexpected lessons, you have bonded this tiny family with love and faith and have provided us with the indescribable feeling of pure and absolute joy. Some days I dislike you and I feel weakened by you, but most days you fill my eyes with tears of happiness and pride for the little girl you can’t slow down. Your challenging ways have made me a stronger woman, a better mother, and a more open-minded individual. You have shaped the character of my child just so, making her a tender yet hard working warrior who always wears a smile despite your presence. I know you’re here to stay, but don’t get too excited. My daughter has you, Cerebral Palsy - but I assure you, you do not have her.




Sincerely,

Oia's Mommy
One very proud CP momma