March 25, 2013-The 1st Official National Cerebral Palsy Awareness Day

Thanks to the efforts of Reaching for the Stars and Senators Isakson and Casey, March 25th, 2013 is the first official National Cerebral Palsy Awareness Day in the United States. It will go down in history as Senate Resolution 89 as part of the 113th Congress.

It’s about more than just wearing our team’s ribbon (although ours is green).

It’s about creating understanding among people that we all have differences yet we are all human and sustained by love, compassion, and the acceptance of each other’s personal challenges.

Here are some facts about cerebral palsy:

  1. It affects more than 17,000,000 worldwide
  2. Cerebral palsy is the most common cause of motor disability in children.
  3. Cerebral palsy is estimated to affect 1 in 303 children in the US
  4. In 80% of cases the specific cause for the development of cerebral palsy is still unknown
  5. Cerebral palsy is NOT contagious
  6. Cerebral palsy does not get worse over time
  7. Not all people with cerebral palsy use wheelchairs
  8. CP receives no dedicated line item funding or research at the CDC or NIH
  9. We don’t understand much more about CP and its prevention and underlying causes than we did a half a century ago

Maya is our daughter and she is one of the 17 million people world wide whose life is affected by cerebral palsy. You may give to Reaching for the Stars.

Discovering Your Child’s Talents

Repost from Facebook: March 12, 2013

A couple of years ago our developmental pediatrician emphasized the importance of helping Maya’s discover her unique gift/s. He said so much time can be spent focusing on what isn’t working with kids who have CP (and other challenges), that it’s important that they can connect with a part of themselves and the world that fulfills them.

For Maya, I have discovered that she has a very discerning musical ear. She loves music and has the ability to detect subtle changes in rhythm, instruments, and sound quality (perhaps a chip off of her Uncle Tyler). Today we were in the car and my XM radio wasn’t working. I told her we would turn on the radio instead. Despite hearing some of her favorite songs she asked me to turn it off because the music sounded horrible on the regular radio. She said if the problem continued she was afraid I would have to buy a new car! LOL. She went onto say that she wished her ears didn’t work as well so that it didn’t bother her.

I stopped her and said, “Maya, you have a great gift and you have no idea how you may want to use it later. Your gifted ears may bother you at times, but they also bring you tremendous joy. Always remember that!”

What are your child’s gifts? If you don’t know perhaps give it some time and feel confident that together you will discover them. Despite the challenges that our children and other people with disabilities may face, there are also talents that may be hidden beneath the surface.

-Michele

We Lost Our First Tooth!

We lost our first tooth! Yay!! We didn’t even realize she had any teeth that were loose but when we finally made our trip to the dentist after so long (I am too embarrassed to say how long), we could see it was ready to fall out. So why did I wait so long to take Maya back to the dentist? Well, to tell you the truth beyond the packed schedule that she has, I dreaded taking her to a place that causes her so much anxiety. From the moving chair, to the noise that the forced air makes, and the list goes on. We finally returned and the night before we discussed her concerns. Among other issues, she told me she didn’t want to be in the room with the cow on the wall because it scares her.

When we arrived I let the receptionist know that Miss Maya was afraid of the cow room and to please make sure she is placed in another room for her dental exam (as if we were checking into a hotel!) They couldn’t believe after so much time had passed that Maya would remember the cow on the wall. I didn’t remember! Anyway, she did great this time!! She took deep breaths, laughed, and she took tremendous responsibility for her concerns and well-being. She told the dentist to be careful with her tools because she has a sensitive gag reflex (which she demonstrated), and when the hygienist asked me a question she attempted to answer it.

I can’t always take Maya’s fears away or make her nervous system less sensitive, but I can help validate her concerns and let her know that it is perfectly acceptable and important for her to express them. The staff at the office was wonderful and took the time to explain and demonstrate what they were going to do before they did it. It makes all of the difference in the world to have a doctor and staff with a patient and gentle disposition.

In this picture you can’t see where her tooth fell out (it’s on the bottom) but by the time I got her to demonstrate it for the camera she was beyond irritated with me.

Throw the Timeline Away!

So many of us get stuck comparing or thinking about our child’s development as it relates to his/her typically developing peers.This is a normal and understandable approach. We want our children to be able to navigate the world much like their peers and as quickly as possible. In the toddler years when a child has been diagnosed with CP, many of us look for signs for how our kids are developing and how much help they may need going forward. It can be a bit scary to see an ever increasing gap between what is typically expected and what you see your child doing. Out of a need for self-preservation I stopped calculating and trying to think of ways to make Maya’s development match up more closely with her same aged peers. I now keep goals in mind, but I have learned to relax my mental grip on the timeline. This has freed me emotionally and allowed me to move into a place of further acceptance of Maya’s challenges (or perhaps the acceptance came first and allowed me to do this). By relaxing my attachment to a certain timeline, I was able to breath easier and begin to work through my fear and anxiety separately, rather than having them become entangled in how I structured Maya’s therapies and practice time (my fear and pain was ultimately being channeled into how I structured her daily routine). Now, I feel grateful and pleasantly surprised as new skills emerge without the drilling and constant pressure associated with trying to force Maya to attain skills when she isn’t ready. It’s not easy to work through these pieces, and to know how much to push your child and when, but as you gather more awareness of what motivates you in your interactions with your child, you will have more clarity.

Big hugs on this challenging journey,

Michele

Reflections On Our First Wheelchair Purchase: Lessons Learned

Until Maya was three, we had a couple of different conventional strollers to transport her. We used them until it was undeniably clear that they didn’t fit her and there were no more conventional alternatives. At that point, we reluctantly began our exploration of wheelchairs. Entering the world of adaptive equipment felt daunting and I was a bit resistant to the idea of her getting a wheelchair because I wasn’t ready to fully accept that she had a disability. I didn’t know how the equipment selection process was supposed to work, what was important for me to look for, and who would guide us through it.

We began by speaking with our physical therapist and telling her that we wanted something easy to travel with that was lightweight and collapsible. We also wanted a chair that kept Maya as upright as possible and able to freely interact with her environment. Basically, we wanted a larger version of her conventional stroller. There aren’t many options available that fit those two criteria but we did manage to find one. However, over time, it became increasingly clear that we had made the wrong choice because the chair did not provide the appropriate positioning support Maya needed. It became a nuisance rather than a source of relief for all of us. Maya wasn’t comfortable, and for two years we continued to prop her up and add belts that never fit her correctly.

How we ended up choosing the wrong chair:

1. We didn’t try an appropriate demo out before we purchased it. The one she tried was a similar model but very old and parts of it were broken, making it difficult to adjust and determine if it was the right fit for her.

2. The physical therapist (PT) that was most familiar with Maya’s movement patterns left her school before our first equipment purchase meeting. A physical therapist’s input is critical in guiding the vendor so that he/she can further consider how the child needs to be supported and which equipment and accessories best accomplish those positioning goals.

3. Maya attended a therapeutic pre-school so the therapists typically carried her to the therapy rooms or would have her crawl. We didn’t have the benefit of having them regularly see her in her stroller or, later, in her new wheelchair. This combined with my husband and I not typically being present during therapy sessions (since the sessions were during school hours), meant that our ongoing communication about equipment was intermittent and piece meal at best.

4. The chair we ordered was not accurately sized. As I was writing this I did some research and the size we ordered was suggested for a child who was two years older than Maya! So, what happened? I think it was a combination of issues leading to us going up a size:

-I expressed concerns that Maya would outgrow her chair too quickly-I understand now that equipment should be sized as closely as possible to the child’s CURRENT measurements.

-Our occupational therapist saw that Maya’s arms were getting caught in the sides of the smaller chair we tried (although I believe this ultimately was due to the position of her pelvis).

-And finally I don’t think the vendor realized that by upsizing there would be a couple of inches of room in the back of her seat that would lead to a very poor fit.

Everyone makes mistakes and equipment fitting is complicated. However, I do believe the vendor and therapists at least should have quickly identified how terribly the chair fit when it was delivered. The vendor said he could send the chair back to the manufacturer but thought we should try a number of belts and harnesses instead. I trusted his judgment but the accessories he presented never worked. I think because we had three different PTs who worked with Maya during this ordering process and thereafter, no one assumed responsibility for addressing the issues with her chair, and I didn’t know enough about equipment fitting to realize that it could be so much better. We were so grateful to have a chair after waiting for six months that we overlooked many of the positioning issues.

5. We received little input from our vendor during the buying process. It felt more like he was an order taker rather than a consultative guide. Despite being well intended, the concerns that were brought forward when the chair was delivered ultimately were never corrected effectively. About a year after we had the chair I saw the vendor in the hallway at Maya’s school and expressed my ongoing frustration with her positioning needs. He looked at her in the chair and said, “Was it always this big for her?”. Wow!

Here are some ideas of what we think is helpful to consider when purchasing your child’s wheelchair (in no particular order):

1. Where will your child be using his/her chair and in what circumstances? Example: Do you wish to have an all-terrain chair? Is that possible? Will there be trade-offs to choosing this type of chair? The more terrain a chair can navigate, the more your child will be able to participate in different types of activities i.e. trails, beach, mulched playgrounds etc.

2. Will it fit in your car? How heavy is the chair and are you able to lift it? Are there lighter alternatives that may work equally as well?

3. What accessories are offered or not offered that you may need? Different chairs offer or are compatible with different accessories. Ask about what is available. Example: We consider a wheelchair tray to be a must have item when we are on the go.

4. Does your child need bus tie downs now or potentially in the future? This is an important consideration when you order a chair because manufacturers must install them and after a year many of them will not. Even if they would agree to this, it would require sending the chair to the manufacturer.

5. Does the chair maximize your child’s current capabilities? Example: Is your child capable of using a manual chair or if not, perhaps a power chair? This can be a tricky question. Our PT asked during our 2nd wheelchair selection if we wanted Maya to have a power chair. In our case I felt that if Maya had a power chair first she would always resist using a manual chair because she would be accustomed to the ease of using the power chair. We didn’t want her to continuously struggle with a manual chair, but we also wanted to make sure we weren’t skipping over an opportunity to help her grow and apply new developmental skills. It’s not always clear how a child will handle a new piece of equipment until he/she tries it. In our case several therapists were unsure how Maya would handle a manual chair. However, once she tried one that fit her appropriately, she demonstrated a passion and drive to move that I have rarely seen in her. If after you consult with the professionals working with your child you still feel confused or conflicted about which direction to take, ask your physical therapist about borrowing an appropriately fitted manual chair for several days.

6. Before purchasing any equipment take your time, try out several options for comparison, and take home a demo if possible! Maya’s positioning needs change throughout the day and depend upon her energy level. The vendor may not be seeing the full picture of what type of support your child needs. We have found that a combination of doing our own internet and catalog research, along with having Maya try out several different pieces of equipment (ask vendors, therapists, fellow parents), has been essential in determining what will work and will not work for us. If you can try out a piece of equipment, you can see how it works for your child at different times of the day and in different settings.

7. Talk to other parents, caregivers, and wheelchair users for their input. Talking to other people who have experience with choosing and using wheelchairs can offer you insight about what to look for that you may not have thought about. Sometimes, I see parents on online forums asking which wheelchair they should buy for their child without any other qualifying points. This may be a helpful question if your child has the same positioning needs as another, but with a diagnosis like CP, the support needs can vary widely among individuals. Also, the child’s capabilities may vary (push wheelchair, power chair, manual chair) along with the family’s lifestyle. Speaking with other people can help you figure out how to think about narrowing down your purchase, and perhaps give you insight about which brands may be more user friendly, just make sure you ask questions that are applicable to your child’s situation and needs. If you have narrowed down your choices to a few chairs, it may be very helpful at that point to consult with other parents who have these chairs and ask them how they like them, what they think works well, and what they wish was different about the chair.

8. Schedule meetings together with your therapist/s during the selection process. Everyone’s input is critical and by having the family, vendor and therapists in the same room working together, collectively you can identify and troubleshoot potential problems that individually each of you may not have considered. Find a vendor that sees that value in working collaboratively with your PT and vice versa. They need each other’s input! You and your therapist will know your child’s movement patterns and can educate your vendor about them. Your vendor should know at least several lines of equipment and which styles may work best for your child’s unique positioning needs. Equipment is expensive so if you have a choice of vendors choose someone who offers a supportive, consultative, and patient attitude during this process.

9. Schedule a meeting for everyone to come together (again) when the vendor delivers your child’s chair. Equipment fitting is a process that doesn’t end once a chair is delivered. There are often necessary tweaks, additional accessories, or changes need to be made after the chair arrives, and in the first few weeks of initial use.

10. Don’t assume that you have to use the first vendor that your therapist suggests. Ask them what they like about the vendor etc. but, if you meet with someone and you don’t feel comfortable with him/her ask your therapist and/or some special needs parents in your community for another recommendation. This is why it is important to have a compatible and open relationship with your therapists. If someone your child’s therapist is involved with isn’t working for your family, you should be able to bring it to their attention without a lot of friction.

11. Choose a wheelchair that offers the maximum flexibility while still meeting your child’s needs. Example: Can the chair grow with your child? Some wheelchairs offer opportunities to use the same frame and update the parts of the equipment as the child grows. Find out how soon insurance will cover a new wheelchair and for what reasons? Equipment is expensive, and the more specialized the equipment, the more money you may spend.

12. Vendors often represent specific manufacturers. Many people don’t realize that equipment companies have preferred or exclusive relationships with certain manufacturers. This is good information to have up front because it will likely be guiding the presentation of information you receive. I asked our current vendor directly if they were restricted in what lines of products they would sell to me (They aren’t). They may still have a preference, but at least I knew that if I found out about a chair from a friend that I wanted to have Maya try, I wouldn’t have to worry about them not being able to sell it to me. A large part of your vendor’s job is to help you hone in on a chair that meets your child’s needs and your needs as closely as possible (and there may be several). Just remember that the few suggestions they offer will not be from them considering all wheelchairs on the market that would be suitable for your child, but those that they know well, have worked well for other clients with similar needs, and perhaps are from manufacturers with whom they have good working relationships.

13. Find out what a vendor’s policy is for addressing equipment adjustments or problems. From time to time equipment may need adjustments or repairs that your therapists cannot address. Find out up front if a vendor is available and willing to address problems that may arise with your child’s wheelchair.

14. Allow your child to participate in the selection process whenever possible. Allow them to ask questions and offer their opinion (where you feel it is appropriate). I had a therapist tell me equipment, particularly wheelchairs, are very personal items and can be considered an extension of someone’s body.

15. Review what has been discussed together, and take a few moments to think about whether anything has been forgotten before placing your order. During this discussion ask your vendor and therapist to offer their insight about your child’s wheelchair compatibility with the your/caregiver’s needs and your family’s lifestyle. Those points of view are not always foremost in their minds, but when directly asked to consider them your therapist and vendor may come up with some important ideas for you to think about before making your final decision.

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Successful equipment selection only occurs through a collaborative PROCESS. Do not rush to find just any piece of equipment for your child. Try out different pieces of equipment and borrow a demo chair for several days to learn about it more intimately. There may be quirks about it that you don’t notice from a few minutes of use. They may be quirks you could live with, but what if they aren’t?

Vendors aren’t perfect, and individual positioning needs are different. Now that we have experienced two vendors I see how critical their input and knowledge can be in making an appropriate equipment selection and working through the challenges associated with finding the ideal positioning for an individual. It’s not only about finding and purchasing the right wheelchair for your child’s needs, but also about the art and science of finding the right positioning accessories (from perhaps multiple manufacturers), to complete the fit. The broader their access and education about what is available on the market, the more elaborate the toolbox they have to address unique situations.

Visit the CP Daily Living equipment section for more information and links to equipment resources, loan closets, and a couple of equipment review sites.

Copyright 2013 CP Daily Living-share freely with authorship credit

 

 

 

 

 

The Magic Behind Peer Support

It’s not always conventional therapy, repetition, and purposeful guidance that lead to developmental changes for Maya. I have also observed the power of positive peer influence and encouragement, and how they culminate in incredible developmental accomplishments as well. On occasion these changes have been very abrupt and have left Maya’s therapists scratching their heads.

I was so touched when I witnessed her classmates’ decision to crawl with her to their next class activity:

Physical Therapy and CP-An Interview

 

I prepared a series of questions about physical therapy and cerebral palsy for our physical therapist, Mary Jones, who specializes in pediatrics. Ms. Jones has been an incredible collaborator, resource, and advocate for using what works for Maya and our family. I feel deeply grateful to have found someone who brings such intelligence, humility and passion to her work. I hope you find her input and insight helpful wherever you are in your journey with your child:

What kind of PT do you practice:  I am a pediatric PT.  I don’t swear by any one treatment type (NDT etc) but try to incorporate pieces of different theories that I find effective and that make sense to me.

What guides your determination of individual goals for each child:  I try to spend a lot of time talking to kids and parents when I’m doing an evaluation and also while we’re working together.  My goals are a combination of what families bring to me as their own goals and what I see as reasonable ‘next steps’ for the child.  Sometimes a family will have specific things that would make their life and/or the child’s life a lot easier or fulfilling that I wouldn’t have thought of, so it’s important to hear what is meaningful to them.  Some families look surprised when I ask them what their goals are for their child, because they see it as something a professional should decide – “I don’t know what to expect, you’re the PT”.  I try to make it a team approach and have to coax out their vision for their child.  I think that some parents need encouragement to voice their dreams for their child because they are afraid of being told that those dreams aren’t possible.  And while sometimes those things may not be realistic in the framework of our goals (typically written for the next 3-6 months, or long term goals for 12 months), we can usually work together to find stepping stones towards their dreams that are realistic and that everyone can feel on board with.  Families play an important role in therapy, so if goals aren’t meaningful to them they are not likely to work on them at home.

Do you believe parents can help support the work you do during therapy visits:  YES!! Kids are typically in outpatient therapy for 1-2 hours per week.  While some kids spend a decent chunk of time in school or daycare, they still spend an overwhelming majority of time with their family.  1 hour per week is not going to make a huge difference in a child’s skills.  It’s what is carried over at home and integrated into daily life that they are able to practice and learn from. My job is to try a million things from my bag of tricks and figure out which few strategies work best for a child, and then teach families how to implement those strategies.  It always makes me smile when a family asks “what can we do at home this week?”  (although I usually try to be giving ideas throughout a session…but we can’t all be perfect all the time!!)

What function or supportive role does PT provide for kids with CP?  This varies depending on the child, but in general terms I feel our role is to help optimize gross motor potential and to assist with appropriate equipment if necessary.

Do you approach kids who have had a loss of skill sets differently from those that may never have had them (TBI vs. CP)?  Not consciously.  I have found that it is difficult to group kids on diagnosis alone because each child is so different, so I don’t feel that my approach is specific based on their mechanism of injury.  Some children work well with focusing on ‘building block skills’ and really breaking larger tasks into their component pieces to learn them, while others do better focusing on a complete functional task.  And a lot of kids fall somewhere in between with a little bit of work on each end of the spectrum.

What is your belief about the role PT plays in helping children initiate new movements or skill sets? How do you determine when a child is ready to pursue new skills? I believe PTs can use their knowledge of movement to guide and facilitate new patterns and skills. I think that we can often use our hands to introduce a new movement to a child and then use activities to help them initiate that movement on their own.  I think that we can help show kids a more balanced way of movement that may be more difficult for those with neurological impairments, but if they are able to grasp those patterns they’ll have a stronger foundation for higher level skills.  And if the ‘proper way’ of moving isn’t possible for their bodies, then it is our job to help them figure out the most functional movement that they can.  I’d like to say there was a scientifically proven method that I use to figure out when someone is ready for a new set of skills, but there isn’t!!  Sometimes we move on when a child has a solid grasp on the skills that we’re working on and it time to move up, sometimes I see a child attempt something that we haven’t tried before and it’s my signal that they’re ready for help with something new, and sometimes I feel like both the child and I get stuck in a rut and it’s just time to throw a curveball into the mix and see what happens.  Sometimes we strike out, but sometimes we hit on something wonderful!!

What advice do you have for parents who are struggling between interventions with opposing philosophies, one of which is PT?  First off, my advice is that they are the parent and that they have to do what feels best to them and what they feel is right for their child. Second, I’m a pretty strong believer in an open-minded approach, so there aren’t a lot of things that I’m outright opposed to.  If they’re running into a big conflict, is it possible that they are not with the right practitioner but could still get benefit from that intervention if it was with someone else who is more open minded? Are their practitioners willing to talk with one another? I think there is common ground to be found most times if people are willing to hear where the other side is truly coming from. The answer may be that these people aren’t interested in collaborating, but it can’t hurt to ask. And if they aren’t, then again my question would be is there someone else who would be?

What are the most noticeable improvements you have seen with kids who have CP?  Kids are generally motivated to move, and I’ve seen some pretty incredible ways children with CP have learned to move and interact with their environment when they’ve been given sufficient opportunity.

What do you feel the limitations and/or negative responses of PT?  Burnout.  Especially for children with complex needs who are in therapy for long periods.  It can be hard to keep things motivating at times and kids are smart – they know that you make them work hard!  I’d like to join this with another question of yours: What misconceptions have you found that people have about PT?  I think that this sometimes pairs with the other question and can lead to a vicious cycle. Some people believe that PTs can ‘fix’ whatever is going on with their child, and this is often not the case.  We cannot take away an underlying genetic or neurological impairment. Our goal is to help kids function to their max despite it.  There will often be limitations to what we are able to do, however, and this can be disappointing to parents, kids and also the therapists themselves. Paired with this is the notion that some people have that because their child has an impairment that they need to be in therapy every week for their whole life.  I disagree with this idea.  I think that there are windows of time when children’s bodies and minds are primed to work on new skills and that is the time that we need to be involved.  There are also some children who may be at risk for regression of skills and need us to help slow or stop the backslide.  But there are also windows of time when things are just holding steady and kids aren’t ready or able to work on whatever may be expected next…and this is ok!!!  Sometimes kids need to be kids and families need to be families without a million appointments.  I think its ok for kids to have a break from services and either be followed consultatively or just having families call back when they feel like new needs have arisen.

What advice do you have for parents on providing their input on selecting equipment?  Speak up!  You are going to be the one using it!  If it looks too complex, say so.  If it’s too big to fit in your living room, say so.  If it doesn’t work for your space and for your lifestyle, you probably aren’t going to end up using it and because of the way reimbursement works, you are probably going to be stuck with it for quite a few years.  There are no stupid questions when it comes to ordering equipment, so think out loud when meeting with a vendor.  If you feel compelled, do your own research.  Realize that not everything you find may be funded in your state or based on your insurance, but it doesn’t hurt to ask.

What do you enjoy most about your profession?  I feel like I become part of many of my patient’s families. I don’t think that there are many jobs where that happens as much as it does in mine.  It’s pretty special when families who have been through a lot trust you with their precious cargo.  Also I love being a part of so many ‘firsts’.  First steps, first time sitting up, first time learning to push themselves in a wheelchair to run away from mom….all wonderful!

What do you like least about your profession?  PAPERWORK!!!!!

What do you think makes you effective at what you do?  I love my patients like they are my own kids. I feel like I’m truly invested in their success and get almost as excited (sometimes more!) when they learn something new.  I try to see all of my kids as individuals and try to keep an open, learning mind as I go.

 

The Ongoing Journey to Acceptance….

“We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell

 

“All aboard!”

Conductor: “This train is going to the first level of Acceptance-‘After the Diagnosis’. Everyone here has an open ticket and the flexibility to make as many stops along the way as you desire. You are also welcome to revisit some places whenever you like.  Take as much or as little time as you need.”

Michele: “Blake, do you have the tickets?”

Blake: “Yes, they are right here. But, I am going to want to go off on my own a little bit.”

Michele: “That’s fine. I have my own exploring to do as well.”

Conductor: “You will find a guidebook in the seat pocket in front of you. We have a long journey ahead of us with many stops along the way. Some of you may wish to stay on the train and rest at certain points as your fellow passengers tour sites. There will be places for photo opportunities, marked by the camera symbol, and beautiful overlooks with clear views to acceptance. These are noted on your maps by the word ‘Hallelujah’.

There will be tour guides, wearing green vests, who will be available to assist you particularly at typically difficult areas of terrain. These areas are marked by the black diamonds on your tour maps. They require extra self-care and compassion.

We are committed to allowing you to plan your own unique itinerary. However, we have found that you have to use all of your senses and feel your way through some of these places and spaces, rather than just trying to intellectually process your feelings. Visiting and discovering the different emotional terrain is essential to moving forward on your continued journey of acceptance.

We have suggested itineraries for all travelers with different inclinations and backgrounds. Some tours include: adventures, religious pathways, haunted emotional places, group tours and survival tours. We have all-inclusive packages as well as al a carte options. Remember that ultimately this is your experience. You may have company along the way, and choose your own path, but no one can experience the journey for you.

Unfortunately, sometimes people stray into high-risk areas– leading to emotional instability. We suggest you bypass these experiences if at all possible. Occasionally tours have powerful vortexes that can pull you down into them without you realizing it. Wherever possible these areas are noted on your maps by the swirling icon. The further you go into these vortexes the more difficult and confusing the terrain becomes. We will equip you with several resources and alternate routes to help you find your way back if you find yourself on one of these paths.

When you reach the first level of acceptance the terrain often levels out and your luggage becomes lighter and more manageable. You will still have ongoing journeys that require your continued courage and acceptance but you will see that it’s easier to breathe, see, and plan future journeys from here.

For our more seasoned travelers you may wish to ask about our ‘path of least resistance’ tours. This tour requires that you have experienced and previously completed at least four emotional tours. They are particularly appealing to passengers who wish to fulfill their continuing education requirements. If you have visited certain areas before, but are seeking further cleansing of old emotional habits on the way to clarity, this may be the tour for you.

Again welcome aboard, and remember we are always here to answer your questions and to offer you a place of rest whenever you need it. Please see our respite coordinator for details. There are many people around you that you may wish to meet or partner with as well. Everyone’s journey is unique, but it often helps to hear about what fellow passengers are experiencing on his or her journey.”

Michele: “Now let’s see what this guidebook has to say. We’re gonna need some help.”

The Guidebook:

Why the journey to acceptance?

As you allow yourself to grieve and let go of your pain, your mind and heart have an opportunity to begin to move to a place of acceptance. Having acceptance about your child’s condition helps you develop a more peaceful place within yourself. New solutions emerge that you couldn’t see when you were distracted, scrambling around, or spending your time and energy trying to save your child from the effects of CP (a normal and understandable coping mechanism.) It is easy to get stuck when you keep revisiting what has happened and attaching the same old thoughts and ideas to those events. You may find yourself dwelling on feelings of guilt, injustice, or regret. When this happens consider new ways of thinking about your child’s diagnosis and take some time to give new ideas a chance. In time, you may see that your feelings change as you challenge your old ideas with new thoughts. 

Common emotional terrain you may experience along the way:

-Guilt

-Feeling overwhelmed and underprepared

-An unceasing obsession with trying to “fix” your child

-Grieving about unfulfilled expectations

-Blaming yourself or others for what has happened

-Feeling sorry for yourself and your child

-Feeling angry at yourself and envious of other people

-Denial or distancing yourself from the diagnosis and your child

-Scrambling to find, fund, and try any and every possible intervention for your child

-Fear about the present and the future

-Obsessing about the past, present, future

-Desire to find meaning in your child’s condition

-Spiritual crises

-Feeling powerless

-Having past traumas and related feelings resurface

-Feelings of gratitude about life and restructuring what is important to you

-Changes in how you relate to people-This can be positive!

*Acceptance is an ongoing process. Many of these feelings may stay a while with you or leave and resurface from time to time. As different issues arise with your child they may trigger old feelings and thoughts that you need to process again (hence the reference to continuing education credits).

Every person is unique in his or her histories, emotions, and perspectives. Just because another person seems to be having an easier time than you processing his/her emotions doesn’t mean you are doing something wrong. Each person’s response to hearing that someone they love has CP will vary in the range of emotions, timing and triggers, as well as how the individual will cope with various feelings. There will be different periods of grief for each person as they move further along. Grieving is a stepping-stone to acceptance.

Watch out for times when you are struggling too much emotionally and don’t be afraid to admit to these struggles. Know that whatever you do to improve your ability to handle your circumstances will help your child and family as well. It’s important to reach out for help, and sometimes this means contacting a professional. There is no shame in this.

Balancing acceptance with persistence:

As a parent it is normal to feel compelled to do whatever you possibly can to help your child get ahead developmentally. Keep in mind that as much as you push yourself to design the treatment plan for your child, your child will be putting forth the effort to participate and experience the plan you develop. As you come closer to acceptance, you will become better attuned to your child’s rhythms and when it may or may not be appropriate to push him/her (and perhaps yourself and your family).

It may be hard to see how to reconcile acceptance with the anxiety that is so common for parents who feel like they are racing against time. This is particularly difficult when children are in their very early neurological development, when the child’s brain is often most receptive to change, and you often have an unknown or very unclear developmental future. You keep pushing yourself and your child, and wondering about possibilities for change; perhaps several times each day. It often feels like an ongoing tug-of-war inside—with so many emotions and complex roles to play. You become a parent with many hats including therapy assistant, advocate, and researcher. Often parents are fighting for their children out of love but also out of pain, guilt, and fear.

Perhaps approach thinking about your child’s development from the standpoint of supporting her development in her own time, rather than trying to chase after a typical development chart or someone’s idea of what one should like for your child. *You may have goals or guide posts, but don’t become consumed with meeting them by a certain time. Doing so may lead to your disappointment and your child may perceive your feelings as her failure.

Know that coming to meet your child and accepting her wherever she is developmentally lets her know and feel that she is ok. There is no greater gift, therapy or intervention that you can give your child than unconditional love. Making decisions from a place of acceptance while simultaneously fighting to help your child is a powerful combination.

*I wish to credit this idea to Anat Baniel who refers to this as “holding goals loosely”.

In conclusion:

It is our hope that you never lose your balance as you embark on this journey. If you do, remember you won’t be the first one to feel lost or discouraged. There are plenty of parents who have fallen and gotten up. They make the commitment to move ahead and you can do this as well.

Michele: “Well, we are almost at the first stop. Do you want to join me and have a look around?”

Blake: “It’s not going to be easy but we might as well get started.”

Some Personal Notes:

I have my days and sometimes longer stretches where my emotions about Maya are right under the surface. They may be related to my own guilt, my impatience to see her get ahead, or my fear that I may not being doing enough for her. The most important thing I have learned to do is to not talk myself into feeling worse. I allow my feelings to come up and out of me while I busy my mind with another activity. If a particular feeling keeps surfacing it’s usually because I am having trouble accepting an aspect of her condition that requires further attention and examination and not necessarily more effort to help Maya.

At times, all I could do at a given moment or day was to acknowledge that I was having difficulty accepting what I was feeling and the obstacles we were facing at that time. Other times I have had the energy to explore why I was having difficulty with a particular issue. What was I afraid of? Could I fix it? If so, how? Could my husband or someone else I am close to help talk me through it? Did I need a professional to guide me?

One strategy that I have found helpful has been to set aside time to be with Maya without thinking and evaluating her progress. I have found that when my mind takes a break, I connect with her in a different way and new solutions spontaneously emerge.

The following is a quote from Anat Baniel speaking about “connecting with” versus trying to “fix” the child. You may find thinking about your child in this way helpful regardless of whether you use her approach during the course of your journey.

“The whole ABM method and approach is based on the understanding that to reach goals we need to pull back from the desire and direct attempts to fix the child and try to ‘make’ them do what they can’t …that actually backing off from these attempts, connecting with a child, are by far much more potent and much more harmonious with the way brains grow and find solutions, even in the face of great challenges. The shifting from the fixing approach to the connecting approach is a powerful way, and in my experience and understanding, a superior and more effective way for giving the child better outcomes. That shift is internal to us and requires our own internal evolution and has nothing to do with the child even though it holds potentially great consequences for the child.”

The longer we are on this path, the more I have seen the truth and magic in Anat Baniel’s approach. I know some parents say that it was their willingness to push their child beyond reason and prognosis that made their child with disabilities so successful later in life. I think there is an important place for this type of drive in raising a child with special needs. However, by pulling back occasionally from trying to “fix” our child’s body, we began to notice, appreciate and even celebrate Maya’s many seemingly small victories. These moments have brought Blake and I both great joy and have helped to build Maya’s confidence and propel her forward. Despite the ongoing struggles she faces, I believe our patience with Maya’s development has helped her to find joy in pushing herself ahead rather than feeling driven by a desire please one of us or her therapists.

For us, peace and progress have come from finding acceptance and combining it with persistence and an open mind rather than complacency or forcing Maya down a certain path. When you act from acceptance you approach your child with love, but when your planning comes from unrecognized fear, you risk transferring that feeling and confusion to your child.

Over time tough topics have been easier to think about and talk about as I have gained more acceptance about Maya’s cerebral palsy. This is particularly true when I speak to Maya about her condition. I also have realized that sometimes she may be asking a question about her challenges with pure curiosity (rather than anxiety), but I bring my own anxiety to the table thinking that she is thinking and feeling what I am. By setting my anxiety aside, she has room to generate innovative and creative solutions to her problems and limitations.

This isn’t an easy ride. Your resilience, persistence, and faith will all be tested. In an effort to come to a new place of acceptance, you will face and transform your own pain, prejudices, ideas about yourself and the world, and how you relate to other people. While daunting, it is also an opportunity for your own healing.

Don’t ever feel you are alone in what you are feeling or thinking. One of us has been there before you. At times I have found stamina and comfort in knowing that another parent has traveled the same emotional roads before me. I imagine myself thinking about these parents, and gathering strength for my day knowing that they made it through the valley, and found life and happiness on the other side. If they could do it, surely we can too.

Copyright 2012, CP Daily Living, Michele Shusterman, all rights reserved.

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Some article about acceptance written by dads of kids with special needs:

The following book review/personal account for “Far From the Tree” offers honest and insightful remarks about the journey to acceptance from a father with a teenage son who has autism. We may have children with different challenges, but special needs parents often move through similar emotional stages and phases along the way:

Here is an article written by a journalist whose son has Asperger’s syndrome. It’s well written, honest, and intriguing (the story documents visits to two former US Presidents!). Plus, it’s written by a father and male voices are often hard to come by for these subjects:

 

Guest post for “Notes from a Pediatric Occupational Therapist”

In this post for occupational therapist Abby Brayton-Chung’s blog, I offer some information about our family, the inspiration for CP Daily Living, and what we look for when we are searching for therapists. I also share some words about trying to accept our daughter’s diagnosis of CP. 

 

Blue-and-white Rifton HTS Hygiene and Toileting System chair with arms, foot tray, and wheels, positioned over a toilet.

The Challenges of Potty Training & CP

Potty training is an area of development that has been very challenging for us. For the last three years we have had much confusion about the amount of physical control Maya has over her bowel and urinary tract functions. This has caused us a considerable amount of stress and it is certainly an issue that many other parents of children with CP face. We have had to consider so many variables to assess Maya’s readiness or desire to try to use the toilet. In fact, I waited several months before writing this section because there were many questions I had about her potty learning that I wanted to investigate further before commenting here.

One of the materials we read (from Rifton and listed below) offering guidance about toilet training readiness for special needs children suggests that parents don’t start this process until the child is ambulatory. I am not sure if the reasoning relates to the muscles supporting the body appropriately or if it has more to do with the child being able to access the restroom independently. I happened to read this after we had already started this process. Maya had an interest and even excitement about using the toilet at age 2, and we figured there was no harm in seeing how she did with it. She is five now and though we are still working on toileting issues, she has about mastered using the toilet for bowel movements.

Whereas Maya’s father (Blake) has had much anxiety about this subject, I have had fewer concerns. We each attach varying levels of anxiety to different developmental issues so this is familiar territory for us. I figure she will eventually work through this developmental piece to the best of her ability and whatever she cannot manage we will help her cope with in a dignified way. Dad on the other hand worries that other children will tease her if she has accidents or if they see she still uses diapers.

Regardless of our differing points of view, we have shared frustration, disappointment and even anger over Maya’s ebbs and flows in successfully using the bathroom. If it was something beyond her control we did not want to harm her self-esteem further by pressuring her, but the reasons for her difficulty have not always been clear.

I recently had an informal discussion with a few other parents of children with CP about potty training. It was started by a mom whose story captured many of the issues we have faced and that we have wondered about for the last few years. Her son is only three but just as Maya has had days and even a week with almost no accidents (and this has been the case for several years now), so has this child. I think this is exactly what is so confusing to parents: How can a child be so close to mastering this task and then have an accident a few days later with no idea that they have wet themselves?

Another parent said her son demonstrated an interest in using the bathroom at age three but did not master this developmental piece until he was ten. She eventually put him on a regular schedule for using the bathroom but still had him in disposable pull-ups. She said her and her husband made a point not to get upset when he had an accident. This reduced the stress of navigating this process. Over time he was having fewer accidents and they eventually weaned him off of the pull-ups and gave him less protection. Can you imagine fighting rather than embracing this process for that many years?

We have gone through phases of backing off, rewarding, following a schedule with timers, becoming angry (when we thought she may have gone in her pants deliberately), rewarding again, using cloth diapers (to increase the awareness of having an accident), and even allowing her to be naked at home so that she can feel if she starts to go right away.

After three years, I am not sure that any of these techniques have helped, and I now know that (for the most part) motivation is not the issue we are facing. There are times when Maya has gone to the bathroom on the toilet but not even realized she has relieved herself until I have shown her. Other times, she insists she needs to go but doesn’t. Over time I have learned that she wants to succeed and she takes pride in using the toilet successfully for bowel movements. If she wasn’t having any success, or if it was remote, we wouldn’t continue to pursue this process. Even so, I have come to accept that this pattern may continue indefinitely for her.

To understand the challenges children with CP may face when controlling their bladder I think about what it’s like when the dentist gives me Novocain and I can’t always feel when liquid is coming out of my mouth after having something to drink. The shifts in muscle tone that come with CP make it tough for these children to always know and feel what is happening with their urinary tracts and intestines. What may appear to be laziness or a lack of motivation may just be another CP related challenge.

For now we keep Maya on a regular schedule of trying to use the bathroom while she is at school and before and after certain activities (out of convenience since she will often ask to be changed if she has an accident). Her caregiver recently started rewarding her since she has had more days where she has been successful staying dry the entire school day. We know it takes effort on her part to think about using the bathroom in addition to managing all of the other challenges associated with her motor control. We have also learned that punishing her by appearing disappointed or angry, or taking privileges away hurts her and this process more. We tried this approach and primarily increased her anxiety and made her afraid of having an accident. If we gained anything, it was that Maya understood that we were taking this issue very seriously and if any part of her was motivated to please us this gave her the opportunity to do so. Perhaps this approach was a necessary stepping- stone for determining what was going on but it was certainly hard for all of us.

I suggest working with your developmental pediatrician (or regular pediatrician) to determine when it is appropriate to begin to work with your child on using the toilet. Our developmental pediatrician said it is important to make sure there are no issues with her urinary tract and/or kidneys since this can obviously affect the child’s ability to be successful through the process of potty training.

As with other areas of development, bring your patience before embarking on this journey and approach it as an experiment where you are learning more about your child in the most non-judgmental manner possible. We have learned to be consistent when we are trying a particular approach, and we are learning to now remove any personal attachment for accomplishing this process within a certain period of time or accepting that we may move no farther from where we are now.

Here are some common issues and questions we and other parents have faced:

I asked Susan Demetrides, CRNP of the Phelps Center for Cerebral Palsy & Neurodevelopmental Medicine at The Kennedy Kriger Institute to offer her general input/insight on some of these questions. It is imperative that you consult with your child’s (or your own) local physicians and medical professionals regarding the individual person’s unique medical issues and complexity that may be contributing to his/her potty training challenges. If she has responded to a particular question her answer is in “bold” below the stated question.

How do I know if my child is ready to begin trying to use the toilet?

“First, I assess every child individually.  Toilet training is more complex than most people think.  As you probably know, the child needs to be emotionally and physically ready. 

If a child is acting like a 2 year old they likely aren’t ready.  Many children with physical disabilities impacting the nervous system are not ready until after 5 Years.  Most children should be at a cognitive level of 3 years (with or without CP before toilet traning should seriously be considered).  There are some children who are ready before then, but unless it is the child really initiating, not the parent, then earlier toilet training often fails.

From a physical perspective, the child needs good trunk support and foot support to even feel comfortable sitting on a toilet.  If positioning is not adequately addressed, the child will be very uncomfortable. Therapists can be very helpful with input regarding positioning.”

Is there an underlying medical issue besides CP that is preventing my child from being successful in using the bathroom?

Constipation (and related issues such as giving Miralax and/or lots of fiber etc.) often makes Maya less successful in managing her bladder functions and often makes it more difficult for her to control her bowel function as well.

“The most important thing that I have found, has been managing constipation.  A child who has consistently soft stools will have an easier time developing bowel control.  Many parents stop using Miralax when they see loose stools too early.  What they are most likely seeing is overflow constipation.  When the Miralax is stopped, the cycle starts again.  It is very important that stool says soft, as if a child develops hard stool, they may associate pain with having a bowel movement. This can result in stool withholding.  I use a picture guide for parents to show me their child’s stool consistency and I would say at least 80 % of the time there is frank constipation.  The rest of the time there is variability. I generally stay away from fiber supplements in young children unless they take adequate fluids.  Taking fiber supplements without fluid can lead to constipation. Fruit-eze  is a natural fiber (fruit) that some children will accept.”

Apparently (several parents reported this on a CP forum as well) ability to master bowel functions does not always mean that child will be able to master bladder function just as well.

Very often we find that it takes Maya longer to release her bladder. This has been frustrating and difficult for me especially when we are outside of our home and I am balancing her on the toilet while squatting. It’s better now that she is older, but she definitely takes longer to get started then what is typical.

“I believe that the concept of neurogenic bladder is underestimated in children with cerebral palsy.  If you have been working with your child on bladder training for 6 months and they are still having trouble initiating, I usually have parents do bladder tracking sheets and get a renal/bladder ultrasound pre and post void.  This will tell me that the anatomy is fine, there is no hydronephrosis or swelling of the kidneys, and she is able to empty her bladder.  If the child has urinary tract infections, further testing like VCUG and urodynamic studies might be considered.  There is a recent study out that I will try to find about neurogenic bladder and CP.

If your pediatrician thinks that your child has voiding dysfunction, biofeedback (with games) can be helpful in learning coordination.  Children usually need to be at developmental level of 6 or 7 yrs to be accepted into a biofeedback program.  You could check with a local pediatric urologist to see if this is available in your area.

But again make sure constipation is addressed as it will negatively impact bladder functioning.”

Is there a medication she is taking that is making it harder for her to control her bathroom functions?

“Re meds: baclofen can effect bladder functioning.  But I have seen many children who have not had problems with bladder functioning with baclofen.  I would check with your pharmacist about your child’s medications and side effects.”

If she can hold her urine all night and even ask to go the bathroom, why can’t she do it during the day?

Why is she able to successfully use the toilet for a week and then has difficulty with controlling her bladder and bowels the next week?

Is she properly motivated?

Does she not care about having accidents because we change her right away? What if we didn’t?

Why does she have more difficulty controlling her bladder toward the end of the day?

Most of the time she can tell us right away if she has had an accident in her diaper. Why can’t she tell us at the beginning of the accident and let us take her to the bathroom?

Does her positioning and comfort on the toilet help her successfully relieve herself?

Will peer pressure make her more successful?

Should we become angry with her in order to gain more understanding about whether this is a motivational problem?

“It is normal to have accidents at first.  The most important thing is to get the child comfortable with using the toilet and not giving negative attention to accidents.  Some kids do ok with a pad in their underwear if they have a little leaking.  Because it takes a few months, so start when the home environment is calm and there are no new changes coming up.”

If she can often use the toilet when we put her on there how come she cannot tell us more often when she has to go?

Is she being untruthful when she says she has no idea that she just completely soaked herself?

Why does she have to urinate more often than most children?

My daughter often says she has to go right away at difficult times and after she has been asked if she need to go and given the opportunity to try (before a plane takes off, before it lands, when we are in the car etc.). She doesn’t always go when I make arrangements for her during these times. Will it harm her progress if I tell her to go in her diaper if she can’t hold it?

Resources

Article on Toilet Training and Multiple Disabilities

Is your child ready?

Here is a wonderful app called Pepi Play for Iphones, Ipads, and Androids that helps your child learn about using the bathroom along with washing her/himself, cleaning clothes and taking a shower. It is quite graphic (lots of real life noises).

Helpful Related Products

Just for toddlers: 

Baby Bjorn Potty Chair

Boon Potty Bench

Travel Potty by Cool Gear

One Step Ahead Wooden Potty Chair  *The  One Step Ahead website states it will hold up to 100 lbs

More products for children and up:

Rifton Blue Wave Toileting System

Aquanaut-We have not used this but I would like to know if you have. Please tell us what you think: cpdailyliving@yahoo.com.

Leckey Easy Seat Potty Trainer-We haven’t used this one but we have used something similar that is no longer made. It happens to be Maya’s favorite but not mine since I have to clean out the tray. She is most comfortable having her feet on the ground when using the toilet.

Special Tomato Potty Seats (elongated and round available)-great for travel

*A toilet aid that has been designed but not produced that I am very excited about for use outside of the home. The designer will update us with further developments and is currently working on bringing is product to market.

Custom made cloth diaper pull ups with snaps on both sides-Especially helpful when regular diapers and pull-up were not working due to spasticity issues which caused the areas of wetness to be in non-traditional places. Also, cloth diaper pull-ups for helping children feel and look more like they are wearing underwear. All of the people we have purchased our custom diapers from are no longer making them. We do however prefer the Trimsie Trainers so if you know how to sew you may wish to look into them. *We haven’t tried these yet  but  this company offers an adjustable trainer that can be used up to 50 lbs: Sprout Change Training Pants.

If you wish to purse cloth diapering you may wish to purchase a wet/dry bag. I really like this mom’s products and she has worked with me to custom-make bags that fit the back of Maya’s wheelchair. I find them to be more then the more expensive and popular bags on the market for cloth diapering. I like using it even if we are not using our cloth diapers because I can store extra clothes and diapers in it as well as placing soiled/wet clothing in the “wet” section of the bag: She is on e-bay, facebook, and Hyena Cart.

Here is a small article on cloth diapering and special needs.

Here is a fact vs fiction on cloth diapering.

Cloth 101, and one more cloth 101 resource that discusses types of cloth diapers 

Squishy Tushy (love the name) offers inexpensive ($10.oo at the time I wrote this) online cloth diapering 101 class.

If you are using disposable pull-ups I highly encourage you to use the ones with velcro on both sides. It’s much easier to be able to use a pull-up or diaper that allows you to put it on and take it off without having to remove your child’s clothes and shoes if he/she has an accident.

*You may wish to visit another section of our site called “Using a Public Restroom”.