It’s been a tough day and tonight has not been much better. There are a lot of things about CP that I’m good at handling as a father. But there are a lot of issues that come up with Haley that while not directly caused by CP are likely influenced by it. One of Haley’s bedtime routines is asking a series of questions.
“Are you or can you go in your room?”
“Lights on Door Open”
“Are you going in the basement?”
“Are you going outside?”
“Do you have any meetings or conferences”

These questions are frustrating but I’ve grown accustomed to them. However now she is also complaining about being afraid all night. It’s 11:00 Pm now and she is still up. She complains about stomach aches, being scared, or anything. This feels all very controlling and I don’t know what to do. I’ve tried ignoring, her but she gets up. I’ve tried yelling at her but she doesn’t care, I’ve threatened to put a lock on the outside of her door but I’m not sure I can do that. This has been going on every night for nearly 2 months. I’M LOOSING IT!

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Today is National Cerebral Palsy Awareness Day. For those who don’t already know the origins of this blog are my children and my oldest daughter has Cerebral Palsy.

When I first started blogging regularly Haley’s Cerebral Palsy was much of my inspiration and it led to the 2009 Father of the year award which led to this blog which led to my involvement in Let’s Cure CP (LCCP).

LCCP is an organization that was founded to support researching potential cures for Cerebral Palsy here in the US. We were founded in April of 2010 and have already raise over $30,000 that is going directly to CP research. We have already commissioned two studies in the US.

Today I ask my readers to help support Let’s Cure CP by:
1) Joining our Facebook page.
2) Join our news letter at LetsCureCP.org
3) Buy a Let’s Cure CP Shirt in honor of National Let’s Cure CP Day.

Size/Color

White – S $20.00 White – M $20.00 White – L $20.00 White – XL $20.00 White – XXL $20.00 Gray – S $20.00 Gray – M $20.00 Gray – L $20.00 Gray – XL $20.00 Gray – XXL $20.00

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I can just imagine the conversation I would have had with my dad had he known what I was going to do with my daughter this past week.

“Kev are you crazy, she’ll break her leg!” “Kevin, there are just some things that aren’t worth it!” Now honestly I don’t know if he would have said that but they would have been reasonable statements. You see this past week I took my daughter Skiing. Yes, that’s right the one with CP.

Actually I took both daughters and my wife but we left Isaac at home. My younger daughter Abby was very cute slid well a few times and decided that she liked drinking hot chocolate in the lodge better and we decided she would probably be the one who dresses nicely and sits in the lodge on ski trips when they get older. Haley on the other hand was awesome and enjoyed her time on the snow. In large part due to the awesome instruction from Nancy and Sam at Cataloochee Mt. in North Carolina.

On the first day Haley was on skis the whole time. It was very difficult for her as she doesn’t have the strength to hold her legs under her while on skis, but Nancy did a few things to help starting with putting little clamps on the tips of both skis that hooked the skis together. This helped and the Nancy held Haley from behind as they skied down the slop. Nancy did let Haley walk the skis up to the “Magic Carpet”- this is kind of like a rope tow but much easier. Haley was able to stand on the carpet pretty much independently after some help getting on. They Skied for about an hour took a break and then skied for another hour after which Haley was pooped for the day.

On the second day Haley worked with Nancy for about an hour again and then we got to work with Sam for a bit on the bucket ski or a sit ski. This was some really cool technology and Sam took her down hill with some pretty tight speed which really gave Haley the feel for what skiing is like. He also told me that it was pretty possible for someone to become pretty independent on the sit ski which is awesome. There is also a clinic at Boon Mt. next year where they train us how to use one together. I’m quite excited about that opportunity.

After the trip Haley and I were talking and I asked her about skiing. She liked it. I asked if she would like to focus on the sit ski since that would be easier for her and she responded with one of the coolest responses, “Dad I want to do both!”

She wants to be able to ski on her own legs and she had fun in the sit ski. She knows she’ll be able to do more in the sit ski but wants to work to do it on her own. I love the determination my daughter shows every day. She is always teaching me.

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Hello all,

It’s been a while since I’ve posted but it’s the new year so I want to let you know my plans for this site over 2011. Many of you know I keep a few blogs including TheDADvocateProject.com, Metzgerbusiness.com and now RoadToThin.com and Kevin-Metzger.com. Technically Kevin-Metzger.com isn’t a blog as I don’t post anything to that site and RoadToThin.com is a partnership with three other men. I also write at 5minutesForSpecialNeeds.com, DadRevolution.com, DadOMatic.com and soon the EastCobber.com. so you can see I’m quite busy. This site has lost focus over time and I had to think about how it fit into the other work I’m doing. Really this site and my work at 5MinutesForSpecialNeeds.com is very complimentary and I’ll be refocusing on issues related to ADD, Dyslexia and Cerebral Palsy specifically on this site. I’ll promise a weekly article to be published on Tuesdays and a reference to the article I write at 5 minutes for special needs on Thursdays. If my audience would like I’ll also point to any other articles I’ve published that week.

The one thing that I think many in this audience will miss is the Dad/family focus that many of the stories I write have. If you are among one of those readers please go over to TheDADvocateProject.com and choose to sigh up for the news letter. Most to all of my dad/family articles will be posted on that site moving forward.

Regards,
Kevin

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I’ve begun guest posting over at 5 minutes for special needs. The site is a wonderful resource for parents who have children with all types of needs and it is really a wonderful community. I post every thursday at approximately 1:00 PM. Check out todays Post Ballet – The Penguin Move

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Haley presented today at the Atlanta Jewish book festival. There were probably 80 people in the audience and it didn’t phase her one bit. I’m so proud of her. Check out the video below.

Haley and Raye Lynn – Atl MJCCA Book Festival 11-14 from Kevin Metzger on Vimeo.

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I have a new friend. She recently sold me a cane for Haley. When I bought the cane I didn’t know who she was all I knew was that she sold customer canes and I needed something cute for my daughter to use in school. Good news is that Haley will be coming off of her walker and unly using a cane. This is very exciting and we’ve seen some huge progress in the last few weeks since I posted Self Pity. It’s funny because even as I wrote that post I knew that we were at a wall/breakthrough.

My new friend’s name is Sally and you can buy your custom cane/crutch from her at EveryKidMobility.com. (Disclaimer: This is not an affiliate link and I currently have no business relation with Sally other than purchasing a cane from her. http://cmp.ly/0)

Sally and I have been talking and it turns out she has CP herself and is quite an impressive person. On top of writing a children’s book she also wrote an article form the perspective of a special needs child to her parents. It is wonderful and moved me, so I asked if I could share it with you, my readers. Sally agreed so here it is:

10 Things I Wish You Knew

a note from a special kid to special parents

You are the perfect parents for me.

I know that you did not sign up for a kid like me- I also know that you sometimes think you cannot face what it takes to raise me. I want you to know that this is not true. I believe that I chose you. Whatever you need to learn, you will learn, The strength you think you need will come from somewhere. the people you need to meet will show up when you need them.

This is the perfect life for me.

My life is a very sepecial one. I believe that I will impact the world in aa unique and wonderful way. Remember this when you heart is breaking because you want a path fo me that is so much easier than this one.

I need you to find your own spiritual path.

Sometimes you will feel tired and helpless and like you cannot care for me one more day. sometimes you will be mad because there seems to be no excaping me. That is OK- There is no way you could take care of me without having those days. Sometimes you may watch people look at me and be a bit embarressed that I am not doing better- that does not make you a bad parent… it just means you are human. Know that when you have lots of these days in a row, it is time for you to get somebody else to take care of me, just long enough for you to regenerate yourself. It is always important that you let people help you. I am depending on you to do whateveryou need to do to take care of yourself.

However I feel about my disability is OK.

Some days you will be amazed at what a happy contented person I am and you will wonder how in the world I do it. Treasure those days. Some days I will be discouraged, some days I will be mad, some days I will feel really sorry for myself. Don’t panic, I will come back around again. If you let me express these unattractive feelings, they have much less power. Even typical folks feel sorry for themselves sometimes.

Let me try things I want to try, even if you are sure I will fail.

I know that you want to protect me- that is your job, I am your child. But I need you to understand that my survival is always going to depend on my determination. Part of my own process is to figure out what my limitations really are. Sometimes I may want to try to do things that seem impossible to you. Please encourage me anyway. It is the willingness to try that is importatn- succes is a bonus. Know that if I fail, I will get over it. If you make me scared to try, I am really doomed.

Don’t worry about my whole life today.

Sometimes you will drive yourself crazy worring about how my life will turn out. You will lose hours of sleep trying to figure out how I will survive in the world after you are gone. This is not helpgul to me. Just help me stay in today. The more you can focus on whatever we have to face today, the more you will be helping me develop the skills I will need when it is time for me to get along without you.

Sometimes people will be mean to me or scared of me. I expect you to stick up for me but, I do not expect you to change the world.

There are lots of really wonderful people in the world. You and I will meet many of them. There are also some real jerks who will be afraid of me or not treat me fairly. They will assume things about me that are not true. They may even assume things about you tat are not true. you may want to blow their brains out. I may want to do the same. I expect you to speak up for me when you can. But I also need for you to be able to let it go. It will not help me if you are mad and defensive all the time. If you are, there are people who may not want to help me just because it is too hard for them to deal with you.

Finding good doctors and professionals is important but, you know me better than they do- I expect you to trust  your own instincts about what is good for me.

The doctors and therapists that work with me are going to be very important in the quality of my life. Some of them will be amazing and some of them will be pretty crazy.  Often, it will be up to you to decide which is which. Listen to them, and know that what they say is important but, also remember that you know me best. If something they suggest does not feel right to you, listen to the small voice and speak up.

I really hope we can laugh.

Ibelieve that laughing was probably God’s best idea- It will be the one thing that can bring joy to our lives the quickest- If I get stuck in a mud puddle, it is probably funny. If you are lifting me and we both fall on the floor in a heap, that is probably funny too. A good joke is worth taking the time to laugh at- Help me not get so caught up in the serious problems we face every day to forget about laughing.

Sally R. Brown

Sally, Thank you so much for giving me this gift. As I read and re-wrote your article again on my blog I believe I could probably write an article about every topic you listed and I might just do that, but the last one moved me to joyful tears as I thought about my daughters infectus laugh that truly brightens everyones day who hears it. We too laugh when she is walking into a room and then just Disapears. “Haley, were did you go? You just disapeared.” “Dad, I’m down here.” “Oh, how did you get down there I thought you just disappeared.” This conversation ends in us cracking up all the time.

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I’ve been following the story about the Florida dad who stormed the bus to threaten everyone who was involved in bullying his daughter who has CP. As a parent of a child who has CP I can easily understand exactly why James Jones did what he did. If someone threw a condom on and smacked my daughter in the back of the head it would take everything I had not smack the kid silly and then go after his parents and the bus driver that let it happen on .

In my experience based on the way I was raised I would think it’s probably best to go do exactly what James did, but based on my personal experience and observing others I think perhaps a different approach would be better. In the end the approach the man took was no better than what the children themselves were doing regardless if he was acting that way for the right reasons. His actions made it so his daughter will not be able to return to the school they had her in. It was his actions that took a bad situation and made it worse.

The children whom he yelled at are no more educated and do not better understand his daughter’s CP, they have experienced the same behavior that they are portraying and they will likely miss the point that got the father so fired up in the first place. Plus the dad is really just spewing vitriol into the air as he was not going to act on anything he said anyway. At lease I hope he wasn’t planning on killing anyone and there is no evidence that he was.

So what would have been the correct response. I can’t speak for James but I can project myself into his exact situation as it’s only 5-6 years away and we’ve already experienced some issues.

As any reader of this blog knows Haley was called weird at the begining of first grade by another girl in her class. Haley didn’t know how to respond initially and felt very dis-empowered. With the help of my mother-in-law, she and Haley wrote a book which they read to the class. We decided it was so good that we needed to publish the book and it is available for sale here.

I’ve heard some people respond to the story of the girl calling Haley weird as if it were bullying but in my opinion it is not. This girl simply did not understand what and why Haley walked differently from everyone else she observed. There was no intent to harm or hurt feelings and the book helped her understand Haley better.

But what if we project into the future. In Middle school the kids who don’t already know Haley will either avoid her or in the worse case bully her. Truthfully while it won’t be too late to educated the kids it is likely that they will have already stopped listening to adults and the best we can do is educate via example.

As I sit here I am hopeful that any warning signs about bullying behavior would be picked up on and communicated by my daughter way before the type of situation James Jones had  to deal with. If that is the case I expect I’d have conversations with the school first and if that were not successful. I discus the situation with the kids and their parents. Once this line has been crossed the only path left is to discuss with the police.

Finally if that did not take care of the problem I would then take matters into my own hands and do something similar to James, although it would be useless at that point because it would contradict everything I had already tied to accomplish.

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Dear Friends and Family,
As you already know, our daughter Haley had a brain bleed shortly after birth, which led to her diagnosis of Cerebral Palsy. Fortunately, Haley is doing incredibly well and we have aggressively treated her since birth with both therapy and more recently surgery. Unfortunately not all people who have Cerebral Palsy (CP) can be successfully treated through these methods and there is currently not cure for CP. Fortunately, Cerebral Palsy is NOT a degenerative disease but rather a condition that is caused by damage to the brain.
CP simply describes an injury occurring in one’s brain at birth or before the age of two. Because of the complexity or how each individual is affected, the severity and challenges faced by each can differ significantly.

Haley, as you know is a blessing in our lives. However, raising a child with CP is not easy. Every family with a special needs child faces tremendous financial, emotional and physical strain. The average person with CP will incur over $1,000,000 in health-care costs in their lifetime. Melanie and I have always been hopeful that we could reverse some of the neurological damage that has occurred. We are fortunate that we live in a time where modern medicine and hope are advancing quickly. We want you to help us advance it more quickly to help Haley and the 500-800,000 other Americans affected with Cerebral Palsy.
While Haley is highly functional and will grow up to be a productive member of society we still have concerns about if she will be able to drive and she still has trouble with visual processing that can not be corrected with glasses. It is our hope and prayer that we will be able to find a cure that will allow Haley to drive and ensure others who are more severely impacted live full lives.

I have joined the board of an organization Let’s Cure CP (www.letscurecp.org) that has found several doctors that can make these dreams become a reality for all children with CP, but they need funding and support for their trials and studies.

Let’s Cure CP is a non-profit organization that will fund Phase 1 clinical research using adult, bone marrow derived stem cells to treat chronic Cerebral Palsy. We have already engaged Dr. James Carroll, the Chief of Pediatric Neurology at Medical College of Georgia and he believes that he can “reverse” some of the damage done to our kids brains by using these cells (we have a video of him on our home page of our website). First he has to complete his animal model study and prove the cells efficacy and safety. Dr. Carroll’s life-changing work is the first of many studies that Let’s Cure CP is supporting.
We have already raised $10,000 to help fund the first round of Dr. Carroll’s research but need much more funding to achieve our goal of finding a cure.
We desperately need your help!
You can support Let’s Cure CP by going to our website (www.letscurecp.org) and make a donation. Every $25, $50 or $100 will help us change the lives of everybody with CP including Haley.

You can additionally support the Lets Cure CP by attending the Atlanta Tailgate Party on September 11th at Stats sports bar thrown by M3 summit and helping to support our organization. The cost to attend the event is $75 and $35 of it will go to Let’s Cure CP. There will be food and Drinks and it starts at 6:00 PM. If you live in Atlanta or visiting to attend the M3 Summit, it should prove to be a great time plus you’ll get to meet some of the coolest Dad and Man bloggers on the Net. You can by tickets at the M3 summit web site http://modernmediaman.com/conferencereg/ Make sure you purchase the Let’s Cure CP ticket. It is the same ticket as M3 VIP Closing Event ‘ATLANTA’S BIGGEST TAILGATE PARTY’ but $35 of the cost of the Let’s Cure CP ticket will goto Let’s Cure CP.
Please pass this information along to all of your friends and colleagues so we can become one stop closer to Curing CP!

Sincerely,
Kevin Metzger
Board Member
Let’s Cure CP

PS In the interest of full disclosure – Lets Cure CP has our application into the IRS for becoming a fully registered 501C3. According to the IRS we can operate as a 501C3 until they finish the review of our application and either approve or deny it. We have had our application in to the IRS since April and as of our last check they are only now reviewing the February applications. Our lawyers have asked that our application be expedited but as we are initially only doing private fund-raising and have not yet written for grant they have refused to expedite the application. We are talking with officials in Georgia to get them to help expedite the process. As stated above to date we have raised close to $20,000 and have already donated $10,000 fund a study at the Medical College of Georgia.

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PLEASE NOTE this post is from 4/12/2009

This paragraph is new content.
It’s funny I’m reading this post a year later and decided to re-run the post. I haven’t bloged on the site in a while and I’m reading through the archives. After reading this post I’m baffeled by the fact that I didn’t talk about when Haley first learned how to climb. It was on the stairs. Haley is an auditory learner and she often needs to tell herself what to do next. When she hears what she should do her brain is able to process the instructions and make her physical body work but when she just sees what she should do she can not process it as well. An example of this is when she learned to climb the stairs. She learned and memorized a cadence. Hand Hand Knee Knee Foot Foot. Once she had this cadence memorized she was able to climb the stairs. I think of that cadence when I remember the instructions I gave her for climbing this structure. She really can do anything she wants as long as she is determined to do it.

Original Post was April 12, 2009

Today was an awesome day. Haley and I went on a date to the park. We went to a park that she does not usually go to. As soon as we arrived there was an ice cream truck so we got some ice cream bars. After eating the bars we went on the swings which is always her first adventure at any park. After the swings she went over to the little kid play structure. She always plays on the little kid structures first if she is at a place she doesn’t know well. It’s sort of a warm up. Anyway we went over to the big play structure after she was comfortable. This structure was really good for her since it had stairs and handle bars all the way to the top and there was no where were the was an opening on both sides. But whenever Haley gets nervous she resorts to crawling. So we walked through the structure together a few times until she felt comfortable walking through the entire structure.

This play set also had a plastic rock wall. Not the kind that is planks of wood with hand grips but more of a molded plastic that actually looks like rock. Anyway after looking at it and asking Haley if she wanted to try it and failing miserably once we took a step back and looked at what we wanted to achieve. First I explained how she could go from one smallest step to the next then I showed her where the smallest steps were and how she could get from one to the next. Then we tried it together. She climbed 2-3 times with assistance and then she decided to try it on her own. She did it. She did it well, and She is AWESOME!!! Here is some video I ended up taking on my cell phone.

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