Honoring a superhero

 

As many of you in the special needs blogging world probably already know, Kate of Chasing Rainbows lost her son Gavin last week. Gavin was a true superhero who inspired so many. In my opinion, Kate is also a superhero. Her words have moved thousands of readers and she so eloquently and freely shares her story with the world.

Kate was kind enough to participate in my Parent's Perspective feature last fall where she shared her thoughts on therapy and raising a child with special needs. Kate went to the ends of the earth to provide for Gavin, and ultimately he was taken from her too soon. As she goes through this heartbreaking time, many are wondering what they can do to help.

Here's are some things you can do to honor Gavin:

• Stop by Kate's blog or Facebook page and offer kind words of support.
• Donate to the Nemours Child Life Department. The Child Life Specialists have played a huge role during all of Gavin's hospitalizations and Gavin's family would appreciate donations to the Child Life Department in lieu of flowers. In addition to monetary donations, you can view a list of items that the Child Life Department is in need of.
• Consider registering to be an organ donor. (You can read the story of Gavin's organ donation here)
• Donate to the Gift of Life Family House, which provides a "home away from home" for transplant patients and their families who travel to Philadelphia for transplant related care.
• Donate to CaringBridge, the site where Kate began her daily journals when Gavin was just an infant.
• And finally, Kate's birthday request: Honor Gavin by helping someone. Document it in words or pictures and share on the Chasing Rainbows Facebook page.

Gavin, you are a true superhero! You've inspired countless families all over the world and your memory will carry on. Kate, thank you for opening your heart and sharing your story with the world. Gavin and his beautiful smile will not be forgotten.

A Parent's Perspective - Adventures in Mattyland

Today, please help me welcome Brandi, of Adventures in Mattyland. Brandi is mom to adorable, 2 year old Matthew, who has epilepsy, cerebral palsy (CP), cortical visual impairment (CVI), bilateral hearing impairment, microcephaly, and undiagnosed chromosomal abnormalities. One of Brandi's goals for 2013 is to create a blog that is an asset to other families. Brandi is well on her way to achieving that and today she is stopping by to share some of her insights gained from being a special needs mommy. Read on to learn more. 

Our life in five words:

Busy, Challenging, Blessed, Loving, Committed

Four qualities I look for in a therapist:

1. The ability to establish a good relationship with my child. A good therapist should be able to set up a relationship with a child to let them know what is expected of  them, but also make them want to come to therapy. Establish guidelines with the parents how meltdowns will be handled and communicate how therapies can also be carried out at home so there is continuity. 
2. Creativity. Be willing to step outside the norm to find what best fits the patient. After much trial and error, Matthew's therapists and I set up a plan to have him do his sessions in a darkened room with a standing bubble lamp to calm him. We have also done a lot of different therapy activities on swings and exercise balls because they help him focus better.
3. Show Discretion. If you have something negative to say about the kid, please don't say it in front of your clients. Nothing will kill a working relationship with a parent quicker than unprofessional comments about their child, even more so if you make them in front of other parents.
4. Willingness to Try New Things. We have tried a few different ACC apps on Matthew's iPad and none were a good fit for him. I found one on my own that I found that I could customize with a dark background which helped Matthew see the speech tiles better. Thankfully we have a great Speech Therapist and Occupational Therapist who co-treat and who listen to our concerns and are willing to take a chance on trying something new and different to capture Matthew's attention.

Three resources I can’t live without:

• Blogs and Support Groups. Joining the blogging community has been a lifesaver for me, both as a writer and a mother of a child with special needs. In the beginning of our journey, I had never felt so alone and isolated because we knew no one else in our situation. I was lucky to find a whole community of parents both on Facebook and through blogging who "get it." Some of my favorite blogs are Love That Max, Along Came the Bird, Bird on the Street, Team Aidan, Modified Mamas, and Mommies of Miracles.
• The iPad. The iPad was a huge game changer for Matthew in terms of therapies and communication. He has shown very little interest in conventional toys, unless it's a Hotwheel car or Mater from the Cars movies, but he gets very excited when he sees his iPad. We began using it in therapy in December 2011 and it was like a light switch flipped for him. We have a great list of apps we use with him and change frequently to help with communication, OT skills, and vision strengthening apps. It has also been a lifesaver during long appointment waits and during meltdowns because then I can play his Beatles playlist or play one of his Disney videos.
• Cozi Calendar app for iPad. This app is fantastic! My husband also has this app on his work iPad and it has saved us from a lot of scheduling problems. You can sync the calendar between multiple devices and the computer so that all of your appointments are easily accessible for everyone in the family and you can even color-code appointments for each individual family member. Cannot tell you how much we love this app! 

Two words (or more!) of advice for therapists working with children with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

• Be flexible. What might work for a kid one week might not work the next week. Be willing to try new activities or adapting existing ones.
• Involve parents as much as possible and try to give them as input as possible. No one knows best what works for a kid than their parents and ultimately they are the ones who have to put therapies into action at home. 

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

When your child is diagnosed, it is perfectly normal to be in denial and to mourn your idea of "normal." Your life is about to change in ways that you won't be able to comprehend. The most important thing is to build your family a village of friends, family, trusted therapists and specialists. One of the best decisions I've made since Matthew started collecting diagnoses was to open myself up and start seeking out other families who are going through similar circumstances that we are. If you're reading this and don't have people to talk to, email me and I will help you get started. 

One dream for my child:

My biggest dream is that Matthew be able to communicate with us. One of the worst feelings as a parent is seeing your child's frustration when they cannot communicate with you.

What I do to rest and recharge:

One night a week, my husband takes Matthew over to his parents’ house to hang out and gives me a night off. I use that time to read, blog, watch movies, shower and sometimes sleep. I get time off and my in-laws' get time with Matthew so it is a win-win.

Thanks so much for stopping by, Brandi! Readers, be sure to follow Matthew's adventures at www.adventuresinmattyland.blogspot.com. You can also follow along on Facebook, Twitter, and Pinterest.

Looking for therapy tips for children with Down syndrome?

Then head on over to Ellen Stumbo's blog, These Broken Vases, to read my tips!

Ellen is a writer, a pastor's wife, and the mother of three girls, one with Down syndrome and one with cerebral palsy. While you're visiting, be sure to browse the rest of Ellen's blog to read heartfelt stories about her family.

Thanks so much for having me, Ellen!

A Parent's Perspective - CP Daily Living

Today I am pleased to introduce to you, Michele and her family! Michele and her husband created a website, CP Daily Living, for parents and caregivers to access information and resources about cerebral palsy. After their daughter, "Maya", now age five, was diagnosed with cerebral palsy, they noticed a gap in online resources for parents and caregivers of children with cerebral palsy.

Part of their goal is to provide information and resources so that people won’t have to scour the Internet to find it the way they did. The other part is more personal: to share how they struggle with daily challenges and try to get ready for long-term ones. Michele says, "We offer this site as a place of hope, possibilities, and love. Whether it is through simply identifying with a mutual struggle, or learning a better way to do something, or finding a new resource, we hope to make other families’ paths more manageable and graceful with each passing day."

Read on to hear Michele's perspective and to learn more about "Maya", age five, who has spastic quadriplegia with dystonic posturing and epilepsy.

Our life in five words:

Love, dedication, grey hair, silver linings, fabulous food

Four qualities I look for in a therapist:

• Experience. Everyone needs to start somewhere and occasionally the less experienced therapist brings a refreshing perspective to the table. However, the complicated tone and movement patterns my child has require someone who has collected information over time that can only be learned, seen, or understood through working directly with children with neuro-developmental challenges.
• Willingness to form a partnership (as opposed to a dictatorship) with me and with my daughter. We want someone willing to listen to our ideas, concerns, and what other interventions we are using that are working as well.
• Holistic thinker who looks at the whole child and the individual parts and how they are working or not working together. Our OT picked up on a visual integration/processing issue that once we had understood and corrected, made a huge difference in our daughter’s ability to relate to her surroundings.
• Someone who is patient yet firm with my daughter. Please don’t coddle my daughter, but also remember she is still a kiddo, and her road is challenging. We want her to reach within herself to move forward without being beaten down in the process. *Our OT shared with me that she learned a very important lesson when she repeatedly ask my daughter to pay attention and follow-through with completing a task. After the third reminder my daughter looked up and said, “Give me a minute, I am thinking.”

Three resources I can’t live without:

1. Kids Beyond Limits by Anat Baniel
2. Fruiteze for constipation
3. Our bedside video monitor

Two words (or more!) of advice for therapists working with children with cerebral palsy:

Take time to discover what motivates my child and honor that inspiration by incorporating it into your working relationship. The more my child is inspired to take ownership of what she does in therapy (rather than having exercises done to her) the more inspired she feels to initiate practicing and learning more on her own. 

A word of advice for the parents of a child newly diagnosed with cerebral palsy:

One of the most challenging aspects of coping with CP has been to learn to accept the unknown. Cerebral palsy’s presentation and outcomes vary from person to person. Although a diagnosis of CP adds an element of permanency to some of your child’s challenges (rather than the child outgrowing them), have hope and persevere with an open mind, knowing that your child still has the opportunity to improve her skills and perhaps even leave behind some of her challenges. One thing you can know for sure is that you can help your child meet his/her greatest possible potential (thank you Anat Baniel). Adopting and feeling comfortable with this perspective is a process that takes time. You cannot accept your child’s diagnosis by burying your feelings or skipping over the process of facing and accepting them. As a family, it’s been important for us to move through our feelings in our own personal time and manner (and hopefully without hurting our child or one another). Grieving is a necessary and healthy part of coping with this journey and each of us grieves in our own way and at different places along the path.

As my daughter has gotten older, a clearer picture has emerged about what kinds of long-term challenges she most likely will face. Having this information has allowed my mind to stop chasing answers and move toward acceptance because at least I now have some idea of what we are dealing with. Before that time, I felt like I was playing that game called “Smasher” where monster heads keep popping up and the player hits them with a hammer only to have more continuously reappear. It’s exhausting, challenging, and makes your head spin as you try to maintain some control over the game. Just like with CP, after you have been in the game for a while patterns begin to emerge that makes it easier to use your energy efficiently to strategize. 

We found that over time a pattern and rhythm of development was emerging that made it easier to navigate this territory and begin to bring some order to what felt like chaos. We were able to see what therapies were and were not helping, and how often we should include them in Maya’s schedule. The goal has been for her to have the greatest benefit without losing skills or becoming exhausted or overwhelmed from too much new information.

When you let go even a little bit of trying to outrun CP, you will find more joy within each day as you begin to see and embrace your child apart from his/her diagnosis. It can be hard to do this. There is often a constant urge to compare your child to other children in order to gauge how much your child is affected by his/her CP. This is completely normal and is a step towards acceptance of reality. Your child will have his/her own developmental path and there is no guidebook for your child’s unique development.

After Maya developed epilepsy, I realized that I needed to shift to approaching her from a place of acceptance and persistence rather than from a place of fear and force. I began to see my beautiful daughter and her smile and light, and I realized that some of my feelings about her condition were translating into me sending her messages that she was not ok. I was fighting on her behalf out of love, but also out of pain, guilt, and a lack of acceptance about her condition.  I don’t beat myself up about it because it is a common and perhaps expected coping mechanism for many parents. I am not sure how I would or could have found my way through it any other way.

Over time the intense feelings I had after the first few years when she was diagnosed have faded into the background. They move in and out, but they visit me less often and are more manageable the further we go on this journey. As Maya has gotten older we have learned to focus on what works for her rather than what doesn’t. She has developed some wonderful gifts despite the challenges she faces.

One dream for my child:

To find fulfillment and joy in her life within the limitations of her diagnosis (whatever they will be) while always being able to rely on hope to lead her forward.

What I do to rest and recharge:

I take a nap whenever I have an opportunity and I find relief by jogging. I was never a runner but one day about a year and half ago I was so overwhelmed and angry that I ran out of the house like Forest Gump. From then on I was hooked. Bubble baths with good smelling treats always makes me smile. I also enjoy writing and gardening. A piece of chocolate or something sweet doesn’t hurt once in a while either.

Michele, thank you so much for stopping by! You and your husband have created a fantastic resource for parents! Readers, be sure to stop by CP Daily Living at www.cpdailyliving.com to find answers to all of your questions about cerebral palsy. You can also follow CP Daily Living on Facebook or on Twitter: @cpdailyliving.

A Parent's Perspective - Outrageous Fortune

Today I'd like to give a very warm welcome to Shasta Kearns Moore, mom to adorable two-year old twin boys, JJ and Malachi. Malachi has quadriplegic extrapyramidal cerebral palsy and dysphagia (a swallowing disorder related to his cerebral palsy). Shasta blogs about Malachi's journey at Outrageous Fortune. I have been following Shasta's journey thought her Dark & Light Kickstarter campaign, which has resulted in a published a children's book, Dark & Light: A Love Story in Black and White, to raise funds for her son's therapy. I am so happy to have Shasta here today to share her perspective!

Our life in five words: 

Busy, thoughtful, roller coaster, books, love

 

Four qualities I look for in a therapist: 

1. Maturity: I very much don't mean that in the sense of age. I mean that in the sense of complexity of thought and a calm demeanor. I believe people can interact with children without resorting to "coochie, coochie, coo!" or flashy lights and loud music. I also want them to understand in a really deep way what it is they are doing and why.
2. Communication: Perhaps it's because I'm a writer, but communication is huge to me. I need a therapist who is willing, open and able to talking about what they are doing and why. Since it's me and not them who is interacting with my son on a daily basis, I need them to be able to explain to me what's going on so that I can implement their strategies and give my son the maximum benefit of their expertise. In fact, I think some therapists could do well if they interpreted their job as more of a parent teacher than a child teacher. Have the parent get hands-on and do the exercise every once in a while while you are there to guide them. 
3. Professionalism: I need a therapist who gets down to work, even if that work is play! A therapist's job is to help and think creatively and offer solutions to problems, not to chit-chat. 
4. A teaching paradigm: My son has cerebral palsy, which is a brain disorder although it is often treated like a muscle disorder. I need the people who work with him to see that he has limitless potential, just like any little boy, because he is capable of learning. He does not need to be "fixed" nor can he get better at something simply by "working harder." Compare this to a child who is struggling with algebra. We wouldn't consider him irreparably broken because of his initially poor math skills and we wouldn't think the solution is to force him to "work harder" at repetitious assignments. We would think creatively and try to supply him with the missing information he needs to understand and then allow him to reach the logical conclusions for himself. This is not only a much more effortless but a much more successful approach. It's not that Malachi's muscles aren't under his control, it's that he doesn't understand how to use that control. Teach him and, step-by-step, he will learn.

Three resources I can’t live without:

• Baby Einstein music toy. This thing is fabulous. Both boys love it, but Malachi would crawl to the ends of the earth for it. The music is nice and soft (there are two volume levels) and never gets annoying. The button is very large and easy to push. The handle makes it nice to carry. The lights are entertaining for when you need a break!
• Alphabet mat. I really think Malachi would not be crawling as well as he is right now without this. This mat is hard enough to give him feedback about where he is in space but soft enough that he's not grinding his elbows off or going to chip a tooth if he slams his head into the ground. I think it makes him much more willing to try new things and make mistakes since he doesn't have to pay so dearly for them as on our wood floors.
• Kids Beyond Limits by Anat Baniel. This book irrevocably transformed the way I see my son's disability and gave me real, concrete tools I could use to improve not only his life, but my own. It talks about how the brain learns, and once you start talking about the human brain, you realize how the same theories can be applied to pretty much any aspect of human life. I cannot urge you strongly enough to get a copy.

Two words (or more!) of advice for therapists working with children with cerebral palsy:

 As I said before, I think a major shift needs to take place towards viewing CP as a brain disorder instead of a muscle disorder. This is a really huge and complex issue, but I highly recommend reading Kids Beyond Limits to really understand how different the approach to CP can be. I've found this approach helps me relate so much better with my son's struggles. Instead of thinking that there is some sort of invisible and incomprehensible resistance in his muscles, I now know that the actions I see are simply a byproduct of disorganization in the brain. It's like if I held a glass of water with one hand and checked the watch on the wrist of my other and accidentally poured the water out. At that moment, my brain was just disorganized — confused as to which hand it needed to rotate. That's what the majority of CP symptoms are like — movements that aren't sequenced correctly or are grouped ineffectively together in the person's mind. So the task is teaching the brain the difference between different parts of the body and the sequence needed for using them effectively, not stretching, cutting, botox-ing or otherwise treating the muscles as separate from the person inside who is wielding them.  

A word of advice for the parents of a child newly diagnosed with cerebral palsy:

Well, I'll get off my Kids Beyond Limits/ Anat Baniel Method soapbox for a moment and just talk about the effects of the diagnosis on a parent's psyche. For this, I would recommend finding or creating a community of parents going through the same thing. For me, I started a blog and met lots of parents — even parents of multiples with CP — who made me feel not quite so alone in my struggles. The difference between how I felt before I had any real idea of what living with CP would be like and today is like night and day. All fear comes from not understanding the future. The more you can learn about what it's *really* like to have a kid with CP, the more you see that it's not so scary. 

 

One dream for my child:

That he will walk independently. I've told myself that I will be happy if he can just crawl and sit up independently. I will consider us to have crossed the finish line. But if I'm really honest with myself, I do dream he will go further than that, even though, in fact, especially because conventional wisdom says he won't.

Actually, more than anything, I hope that he is accepted for who he is by his peers. Yes, more than walking, or even crawling, I hope that he can make friends and keep them.

What I do to rest and recharge:

Read fiction, sleep, watch Netflix with my husband, and blog. (Yes, blogging is often a stress release!)

  

Thank you so much for stopping by, Shasta! Your words are truly inspirational! Readers, you can follow Malachi's progress on Shasta's blog, Outrageous Fortune.

Other ways to keep up with Shasta and Malachi:

Twitter @ShastaKM, Facebook, and Pinterest

And of course, don't forget to check out Shasta's new book, Dark & Light: A Love Story in Black and White.

 

A Parent's Perspective - Chasing Rainbows

Let's give a warm welcome to Kate, from Chasing Rainbows, where she beautifully chronicles her family's life. Kate is the wonderful mom to Brian, who is almost four(!) and Gavin, who just turned five. Gavin has Cerebral Palsy, Hypotonia, Developmental Delay, and an Undiagnosed Genetic Syndrome, but he continues to impress those in his life with his accomplishments. Take it away, Kate!

Our life in five words:

Positive, peaceful, inspiring, unexpected, roller coaster

Four qualities I look for in a therapist:

1. A connection with Gavin is one of the most important things to me. If he trusts the therapist...if he or she takes the time to learn his favorite songs...if they are patient and meet Gavin where he is...they will get much more out of him.
2. Unique ideas. I love a therapist who isn’t afraid to try new things. You just never know what Gavin will respond to - some of his best work has come from a therapist taking a risk and trying something new!
3. That they push him more than I do. I would never have thought that Gavin would have held a marker and used a “Spin and Draw”. I was never so happy to be wrong.
4. Communication. For the last five years, Gavin has received ALL of his services in my home. I never missed a thing! This year, he started school and his therapists see him there. It’s so important to me to hear from them about how he’s doing. They write in his communication book that goes back and forth...they email me...we talk on the phone...and I was sure to put “consult” in Gavin’s IEP so we have frequent meetings to discuss his therapy activity, progress and goals.

Three resources I can’t live without:

1. The internet!! Usually you can find me in bed with my iPad into the wee hours. When I’m not googling therapy tools or toys for Gavin...I’m researching genetic syndromes. Gavin is currently undiagnosed and has undergone extensive genetic testing.
2. Gavin’s bed. When he outgrew his crib, I started looking for a bed. Regular hospital beds were out of the question...and I didn’t care for the look of some of the other special needs beds. I was THRILLED to find a unique bed made by a Dad for his special needs daughter. It’s called the “Courtney Bed” by Cyr Designs. It’s sturdy...safe...and Gavin’s mattress is the most comfortable one in the house! The netting is illuminated at night by his Twilight Turtle and all four of us have even piled in together to read books. We never have to worry about him falling out of bed or banging his teeth or head on anything.
3. My blog. Writing each day is the best thing I do for my emotional health. And it has also connected me with other parents who are on a path resembling ours. That blog is so important to me in so many ways.

Two words (or more!) of advice for therapists:

Working with children: Create a "we're in this together as team mates!" atmosphere as opposed to "I am the therapist - you must do what I want". 

Listen to the parents! Often times special needs parents feel out of control with experts and doctors hovering over their shoulder telling them what to do with their child. Try not to pile more on top of that. Create an environment where the parent feels like you are learning from them. Inflate their ego. Trust me - it will go a long way in your relationship!!

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy or an undiagnosed genetic syndrome:

In the beginning you're in the well looking up and it seems like you'll stay down there forever. Let yourself adjust to the news...to the disappointment.  Let yourself grieve and be angry.  Soon you will realize that it wasn't as bad as you thought it would be (things usually aren’t in life!) and your child will open your heart and your mind in a way that you didn't even know was possible.

Keep an open mind. Some of the best therapies and treatments for our child were alternative...and some people thought we were crazy. But no one can argue with the great results we’ve had! Lots of people will have lots of opinions on how you should treat, care for, cure your child - but they aren’t in your home every day. Stay focused on your little one and block out the noise. You are the best parent for your child.

But the best wisdom I can share with you is something my precious son taught me. As much as you spend days and nights and dollars to help your child...it is really your child that was sent to help you. Gavin changed my life in the best possible ways.

One dream for my child:

My biggest and greatest dream is for Gavin to talk.

And finally, what I do to rest and recharge:

My husband and I think it’s very important to get away together. Early on, we worked hard to establish relationships with caregivers and gave them a LOT of time to get to know Gavin and care for him in our home while we were present. We don’t have the luxury of just hiring a babysitter on a whim - like the teenager down the street or a friend’s trusted babysitter. Gavin has too many tricky issues. Knowing that our caregivers know Gavin’s routine, his issues, his likes and dislikes, makes leaving him so much easier. We have been able to go on many weekend trips which has done wonders for our marriage. And our sanity! And sometimes, let’s face it, our kids need a break from us.

Kate, thank you so much for stopping by and sharing your perspective! Readers, head on over to Kate's blog at www.kateleong.com to see what she and her boys are up to! Not sure where to start? I recommend starting here. I love how she and Ed met!