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Reflections On Our First Wheelchair Purchase: Lessons Learned

January 25, 2013/in CP Daily Living/by cpdailyliving

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 2^nd 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.

The Magic Behind Peer Support

January 19, 2013/in CP Daily Living/by cpdailyliving

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

January 10, 2013/in CP Daily Living/by cpdailyliving

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….

December 5, 2012/in CP Daily Living/by cpdailyliving

“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.

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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”

October 25, 2012/in CP Daily Living/by cpdailyliving

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

September 19, 2012/in CP Daily Living/by cpdailyliving

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”.

A Book Review: “Mommy, I Wish I Could Tell You What They Did To Me In School Today”

August 24, 2012/in CP Daily Living/by cpdailyliving

I don’t usually feel compelled to present book reviews as blog posts. However, after reading “Mommy, I Wish I Could Tell You What They Did To Me In School Today” by Richard Stripp Sr., I felt a responsibility to discuss it here. In it, the author, a special needs aide in the New Jersey public school system, offers a forthcoming and graphic depiction of some of the problems non-verbal special needs children have faced (and may continue to face) while attending school. It’s a book that evoked a range of emotions in me, from anger to deep sadness.

It’s arranged into individual chapters representing ten non-verbal special needs children with whom the author has worked. Each chapter includes a section that is presented as if the child were speaking. Mr. Stripp assumes the emotional and cognitive role of the child and presents what he believes these children would say if they could speak for themselves.

This powerful approach gives each child a new opportunity “to be heard” and for the child and his/her experience to be reframed with more compassionate eyes. It allows these children without a voice to be viewed with respect, and for their behavior to be reinterpreted as communicative* and intelligent rather than disruptive, meaningless, and even disgusting. In fact he states, “Often the behavior that teachers, administrators, aides or assistants find so disturbing is behavior that is a direct result of their actions and/or words”.

For instance, in one chapter a boy named “Adam” who has cerebral palsy hides his shoes every day before school. As irritating as this behavior may seem, it was the child’s way of communicating that he did not want to go to school and in his case he had good reasons. The author states that the child was often left in wet/soiled diapers and strapped to a chair most of the day (and that’s not the worst of it). Amazingly, this behavior stopped once his parents took him out of the school and sent him to one that provided appropriate care and educational opportunities.

The majority of the book is a series of horrifying accounts of mistreated and misunderstood special needs children. Only at the very end does the reader see statements about people besides Mr. Stripp who are committed to compassionately caring for and educating special needs children. Until reaching this section the reader has a picture of public special education in the US that is terrifying. Perhaps he does this on purpose, painting such a bleak picture so that the reader does not discount the importance and severity of this book’s message. However, I think the book’s message is so powerful that it would have come through even if he had included a broader viewpoint of special education and its problems in the initial chapters of the book.

We all need to remember and acknowledge that not all school programs, assistants, and people handle our children with ignorance and cause for concern. Nonetheless, some do, and the author is calling for awareness and change where negligence exists.

Mr. Stripp offers several potential solutions to ensure a better level of care and education for non-verbal special needs children. He proposes that school districts set standards of education and experience for special needs aides that allow them to support special needs children appropriately. For without adequate training, he believes both the staff and students are put at risk. He also offers some simple tips that school personnel can use to evaluate their interaction with a child. Finally, he suggests the widespread use of web cams (I have mixed feelings about this) and proposes that schools have an open door policy that allows parent advocate groups to stop by unannounced.

I believe our society can do much better to safeguard our special needs children and their educational opportunities. Any improvement has to begin with awareness and an acknowledgement that a problem exists. I commend the author for his courageous commitment to some of our most vulnerable children. He has taken steps to bring awareness to the profound problems that exist in special education and has brought them to the forefront in a way that cannot be ignored.

*The idea of behavior being communicative comes from a quote in the book on page 7.

Follow-up Articles & Resources:

Here is a link to an interview with the author on Autism Live.

Please see our “Books, Bloggers, & Other Media Resources” section for more resources related to cerebral palsy and special needs children.

Here is a link to the Mr. Stripp’s website where you may learn more about him and his efforts.

Shortly after posting this entry we came across an article that Wrightslaw posted about the use of cameras to protect special needs children from abuse.

Special Ed Ratings: A website designed to give parents in the US an opportunity to offer feedback on their local special education public school services.

The Beauty of Therapeutic Riding

July 19, 2012/in CP Daily Living/by cpdailyliving

I was eager to have Maya start therapeutic riding when we found out she had cerebral palsy. Even before her diagnosis, I had heard many wonderful stories about how therapeutic riding was helping children with various disabilities. When she was diagnosed, Maya was about a year old and I was disappointed that she was too young too ride. When we relocated to South Carolina two years later I contacted Happy Hooves Therapeutic Riding Center. Recently, I saw the owner who recounted our first phone conversation and it made us both laugh. I had been so excited to hear that Maya met their age requirement that I had the enthusiasm of a teenager at a rock concert. This may sound strange, and perhaps it is, but I had a good gut feeling about the possibilities of what Maya could experience through riding. As a parent to a child with a physical disability I cherish the few opportunities my daughter has to participate in activities that offer her freedom from being in her wheelchair. Therapeutic riding was, and still is, the only activity I know that offers young children with moderate physical disabilities an opportunity for social, emotional, and physical growth in a natural setting.

Maya has been riding now for almost three years. We have consistently seen improvements in her posture and balance and there is something very beautiful about the relationship between the horse and rider. I find it magical to watch not only Maya, but also other children and young adults with disabilities come alive and look uncharacteristically free sitting upon a horse. In the picture I have chosen for this post, Maya had just started riding. What is incredible to me, our family and her therapists, is that in this picture it is not remotely apparent that Maya has difficulty sitting or maintaining her balance. Her experience on the horse is not always this effortless, but this image and the potential shown within it, will stay with me for years to come. A close friend of mine, whose daughter has a rare genetic syndrome, often shares with people that her child spoke her first word on a horse. She is still profoundly moved by this experience and credits her child’s love of riding with providing the momentum for this huge developmental shift.

I also appreciate the flexibility therapeutic riding offers. If Maya is tired and having difficulty staying upright, her instructor may have her ride backwards (shown below) which uses different muscles, or will have her lie over the top of the horse. Maya loves both alternatives and she still receives input from the horse’s gait when she is lying down. There is no fighting or forcing, or even worries about “using the time efficiently” because there are many opportunities for the child to learn on and off of the horse, including learning to care for it. Rarely is Maya able to participate freely in activities and feel independent but she experiences both with riding. It’s exciting to watch her and to feel her enthusiasm for this activity. We also enjoy the time Maya spends riding. The area surrounding the stables is beautiful and it helps me to clear my head. It gives all of us a refreshing break from the monotony of indoor therapy sessions and doctor visits. And it’s fun for her!

Initially I had difficulty finding places that offer therapeutic riding. Now that we have been involved with riding for a few years, I have learned about PATH International, which may help you locate a therapeutic riding center near you. We have found therapeutic riding lessons to be very affordable in our area especially when compared with other non-covered treatments and interventions. However, for some families any additional and ongoing costs may be a hardship. In this case, you may wish to look into Hippotherapy which is conducted by a licensed therapy professional such as an occupational therapist, physical therapist, or speech therapist who may be able to bill through your health insurance.

In the “Treatment/Interventions” section of the website we offer more detailed information about the definition of Therapeutic Riding and how if differs from Hippotherapy. We also present an analysis of current research studies that investigate whether therapeutic riding and hippotherapy are effective in treating symptoms associated with cerebral palsy. Click here to be redirected to this area of the “Treatment/Interventions” section of the website.

A smiling young girl in a pink adaptive seat and her father, with popcorn and drinks, in seats at a movie theater.

Finding Mainstream & Adaptive Seating Solutions

July 1, 2012/in CP Daily Living/by cpdailyliving

I want to give Maya every opportunity to feel like other children in a variety of settings. This past weekend we took her to the movies and tried out her new Special Tomato Booster Chair. She was so happy to be able to sit in the theatre seats like everyone else. Coincidentally, the next day a friend of mine, whose daughter uses a wheelchair, posted a picture on Facebook of her child sitting at the table with her family for the first time. Her child is three years old. She said to me, “I know it seems like such a small thing but she has never been tall enough to reach the table and eat with the rest of us”. I didn’t think it was a small milestone at all. In fact, I knew exactly how she felt.

From the time Maya was very young we have struggled to find the best ways to support her in a seated position. Because we are an active family and we enjoy being on the go, we are always searching for equipment and creative solutions that are versatile, easily transported, supportive, and maximally inclusive. Maya is now five years old and it was only this year that she has been able to fluidly get into sitting and interact with her environment with any degree of independence. Still, we rely heavily on adaptive equipment for sitting due to her continued balance challenges. We have used a variety of mainstream market products and adaptive seating options along the way. I have wondered how other parents tackle these sitting challenges and I hope that by providing insight into our journey and the list of products we have tried, we can help others get through similar issues. *There is a summary list at the end of this post with brief comments about seating products we have tried.

Maya showed signs of sitting independently within the first year but she lacked the stability to maintain it, and she could not get into a sitting position on her own. I remember a couple of physicians and therapists evaluating her early on and remarking how “she sits so well”. Their evaluations were shortsighted because they considered her sitting successful if she could hold the position for a few seconds. Unfortunately, even a subtle noise was enough for her to lose her balance and fall over. She was quite adept at performing for doctors and therapists for short assessments, but she couldn’t play meaningfully with toys or other children. Over the last few years, I have repeatedly said, “If only Maya could sit up by herself I could do so much more with her and she would be much more independent.” Instead, I have often struggled to support her in a sitting position while simultaneously trying to help her engage with her environment.

This discrepancy between her performance for her doctors and her lack of independent sitting at home has made for a confusing journey. Since we were told early on that her case of CP was mild (which turned out to be incorrect), we kept prolonging the use of mainstream items thinking she would soon be on her way to independent sitting and mobility. Instead, we have slowly been pulled into the world of adaptive equipment.

Until she was about three years old, Maya used mostly conventional baby/toddler items for sitting. We were able to find mainstream market toddler booster chairs and make small adaptations to them so that they worked for her. However, there came a time when the rolled up towels and tweaks stopped working. This was true even for some of our adaptive items. I have learned my lesson about trying to make ill-fitting mainstream items and adaptive equipment work. When a product’s foundation fundamentally does not provide appropriate support for Maya, attempts to improve it with more straps or additional accessories are fruitless.

Sometimes we use Maya’s wheelchair for sitting but it often prevents her from interacting at the same level as her peers and with adults. For some children, the wheelchair may be the best and only option because of the nature or presentation of his/her disability. Since Maya has good head and neck control (and some trunk control), I do whatever I can to offer her alternative seating opportunities. When she is at home she rarely uses her wheelchair since we want Maya to practice moving herself without equipment whenever she can. When she gets older this may change. For the time being, I feel it is important to vary her seating options whenever possible to include her as intimately as possible with the people around her.

Once we started accepting the realization that we needed multiple pieces of better fitting equipment, over time we learned that finding appropriate equipment for Maya was not easy. It requires patience, research, intuition, trial and error (it is helpful to borrow equipment from lending agencies or therapy groups), the assistance of experienced therapists and vendors, and sometimes a little serendipidy. As I have learned more about how Maya’s CP affects her body I have found that I have a sense of what equipment may work for her. I have often presented ideas and specific products to Maya’s therapists for their approval and input, and this team approach has been successful for us.

There are many variables to consider when determining what type of seating solutions will work for your child. Because CP presents in countless ways, not all equipment will fit every child. At the same time, we are often faced with having to pick from the same equipment bases but use different accessories to personalize it for our unique children. Consult with your child’s therapist to help you determine which areas your child needs additional support. Then make a list of what you feel is important for your child and yourself in using the equipment.

You may find it helpful to list all of the sitting activities your child participates in that you feel require additional support and perhaps consider the following questions:

What do you feel is most important for your child do be able to do during these activities?

How do your child’s therapists feel these goals could be achieved with equipment?

What do the therapists feel is important for your child to be able to do or practice during these activities?

Where will your child participate in these activities? How will this affect your needs (i.e. do you need something portable or lightweight)?

If your child is able to provide input, ask them what he/she wants or needs. You may be surprised by her answers.

Once you have identified a potential piece of equipment for your child, consider how often and for how long it will be used. Some items we have seen (or that have been presented to us) have seemed like a great idea but when applied to our situation we found it was wise to look for more practical and less expensive alternatives or solutions. For instance, a floor sitter with a tray may seem like a fantastic idea but perhaps your child doesn’t like to sit still and will spend her time fighting to get out of it. If the item you are considering is $50.00 you may be willing to take your chances without much thought, but if it is $500.o0 you will probably have some regrets if it doesn’t get used the way you had hoped. It may help to select multi-use items to address issues such as this where you know the equipment will definitely get used for one activity and then if it gets used in an alternate but much less frequent way, it will be a bonus rather than a regret.

Or, perhaps after considering an item you do conclude that your child needs it. You may determine that your child may not need a particular piece of equipment for very long, but that it is essential for the time that she does need it.

And my final suggestion…Do not buy it unless you are able to try it (or return it once you do try it)!

Ideally your child should be appropriately supported in sitting so she has free use of her hands and arms (rather than putting all of her energy into keeping herself upright). This can be difficult. Often we have found that equipment is either too restrictive or not supportive enough. Some pieces of equipment can greatly limit a child’s interaction with her environment. For instance, I love how Maya is able to use her hands and arms in the Kaye Bolster Chair. I also appreciate that it has wheels and I can move it throughout the house. It has a large tray table that is great for crafts, painting, and eating. The downside is that the tray creates a large boundary around her that prevents her from moving about her environment or getting close to peers, and obviously using the same workspace. There are trade-offs with using any piece of equipment but you want to at least be aware of what you and/or your child may be giving up in using a particular product.

Our most recent search for a new product for Maya came about a few months ago when she outgrew her mainstream booster chair by First Years. It was our last hurrah for using a conventional seating option for eating. She had simply gotten too big to use it and I no longer had any luck finding a mainstream item to replace it. We have an island in our kitchen with bar stools and I was determined to find a way for Maya to sit there with our family since it is a fun and often used part of our home. The primary issue was finding something that was appropriately supportive and would attach to our bar chairs. Our list of goals in order of priority included good trunk support for effective and free use of hands and arms, ease of use, durability, washability, and lastly portability throughout the house.

After looking at the Special Tomato products online for a few years, I decided to finally give one a try for our kitchen. Their Soft-Touch Sitter appeared versatile. It could be used on multiple chairs, at home and potentially at school, and the website showed a kit that could be ordered to use the Sitter on the floor. The Special Tomato products are made with a material that is easy to clean, soft and cushiony. It has some give while being molded and this appears to be a great combination especially with Maya’s shifting muscle tone. I ordered the Sitter and, except for lacking a removable tray, the product has not disappointed.

We had such a good fit with the Sitter, I decided to order the new Special Tomato Booster Seat to use when we go to restaurants and for traveling. This was an area for which we currently did not have an alternative to using Maya’s wheelchair after she outgrew the Fisher Price Healthy Care Booster Seat. We were not sure if the Special Tomato Booster would be supportive enough. It turned out it wasn’t, and I went ahead and ordered their Soft-Touch Back Cushion Liner (The back and seat liner products can be used to increase support in strollers and wheelchairs). The Back Liner is presented on the website with a Seat Liner that is similar to the booster seat but with a lower profile. The combination of the Special Tomato Booster Seat and Back Cushion Liner work great and offer Maya the additional support she needs. All we need now is a bag to carry it together.

Before we used the Special Tomato products, we had tried a list of items that never worked as well. The Seat2Go by Drive Medical was the piece of equipment we used heavily outside of our home, at pre-school, and for travel for a couple of years. Conceptually it was ideal but it never independently provided the trunk support Maya needed, and it had a few other problems. It was a stepping-stone and one I was grateful to have. It gave us ideas about what we were looking for and what Maya needed in an adaptive seating product. We used to put towels on the sides of it and often readjusted her when she used it. You may find that it will work well for your child. In fact, Maya used it at school for the last couple of years inside of a Rifton chair like this one.

Even though it wasn’t perfect, I felt the Seat2Go had so much potential that I contacted the product developer with a list of potential improvements for it. These included increasing lateral adjustability, using a material that is easier to clean (it is a suede/velour type of material on much of the outside) and changing the bottom so that it doesn’t scratch the surface of what it is sitting upon. My biggest design issue with this product is that it is called the Seat2Go but it is not easily carried. When transporting it the straps hang all over the place, there is no handle or backpack straps for carrying it, and it could use its own storage bag.

I have wondered why we have struggled to find the right products for Maya. We often seem to fall in the middle of what manufacturers offer. Are her supportive needs different than most of the other children using equipment? Are the product developers’ surveys not yielding complete information about what special needs consumers and their families are looking for? Perhaps it is the difficulty associated with companies trying to maintain profits by trying to create universal products and in the case of CP, apply them to non-universal problems.

I would like to see manufacturers offer more intimate communication with special needs families and more specific customization options. One company called Prime Engineering (makers of the KidWalk Gait Trainer) offers customization beyond their standard list of accessories and encourages the consumer to contact them. I am also not sure why there are not more simple (and in turn less expensive) adaptations available for conventional products, or why the special needs market seems to often be out of touch with our family. Frequently it seems that the accessory or adaptation we need is not found among the list of product options. Although products have improved over time in terms of materials, convenience and portability, I still feel special needs manufacturers could do better. Perhaps because the person who founded Special Tomato has a grandchild with Down syndrome, he understands the needs and goals of children with disabilities and their families better than most. Fortunately, it looks like we have found a company whose products for sitting work well for Maya and address our concerns as well.

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Mainstream and Adaptive Seating Options

The following is a list of regular baby/toddler products and adaptive special needs products we have tried over the last five years. Some we have had more success with than others. When it came to finding some of the mainstream items I have looked for seats that had an abductor/pommel, three-point harness, and tray option. This combination typically offered the best support for Maya. Perhaps you will see something here that will help your child:

Special Tomato Soft-Touch Booster Seat-Portable, lightweight, easy to clean, good combination of material that gives and is molded for support, can be used in multiple settings and can be adjusted for use on different chairs.

Special Tomato Soft-Touch Back and Seat Liners-Portable, multi-use (in strollers, wheelchairs, on desk and table chairs), lightweight, easy to clean, easy to transport. We ordered our Convaid push wheelchair a couple of years ago. Our priorities were different at the time and ease of use, portability, and a mostly upright configuration were our highest priorities. It has never offered Maya the support she needs. I love how light it is and it is very convenient. We tried the Special Tomato Booster on the base and it appeared to resolve most of Maya’s issues except the Booster is a bit too high. I am going to order The Soft Touch Seat Liner for use with this wheelchair in hopes of resolving many of her support issues.

The following are pictures of Booster Seat and the Back Liner:

Special Tomato Soft-Touch Sitter-This is a countered seat that offers a five-point harness for support around the chest, pelvic area and waist (we don’t use the chest/shoulder straps). It has a built in abductor and head and lateral supports. Although it is tall, it is lightweight and can be used in different chairs at home and perhaps at school. I wish it had a removable tray. This is not the most convenient item to transport but it has lots of versatility. There is an option for a stable or mobile floor kit, it can be turned into a tilt-in-space chair, and it is offered in child through adult sizes. Why did we wait so long to try this?!

Seat2Go-We used this piece of equipment frequently outside of our home, at pre-school, and for travel for a couple of years. Conceptually it was ideal but it never independently provided the trunk support Maya needed, and it had a few other problems. It was a stepping-stone and one I was grateful to have. It gave us ideas about what we were looking for and what Maya needed in an adaptive seating product. We used to put towels on the sides of it and often readjusted her when she used it. You may find that it will work well for your child. In fact, Maya used it at school for the last couple of years inside of a Rifton chair like this one. Even though it wasn’t perfect, I felt the Seat 2 Go had so much potential that I contacted the product developer with a list of potential improvements for it. These included increasing lateral adjustability, using a material that is easier to clean (it is a suede/velour type of material on much of the outside) and changing the bottom so that it doesn’t scratch the surface of what it is sitting upon. My biggest design issue with this product is that it is called the Seat 2 Go but it is not easily carried. When transporting it the straps hang all over the place, there is no handle or backpack straps for carrying it, and it could use its own storage bag. The pictures below have the pommel accessory which is an option, but does not come standard with the Seat2Go.

Kaye Bolster Chair-This has been a great option for Maya at home and at school but again it creates a large boundary around her. The company’s website states, “that it was designed for kids who needs a wide based of support in order to achieve good pelvic position, lower extremity position, and trunk alignment for stable sitting.” It comes in two sizes and has an option for moveable casters. Maya’s posture and positioning are better in this chair than any other chair we have tried. Guess who was the first person to use it with her? Her school teacher!! You never know who might have a great idea.

Fisher Price Healthy Care Deluxe Booster-We relied upon this seat heavily at home when we were on the go, at restaurants, and at her grandparent’s house. It is inexpensive, lightweight, and has a carry strap. It is easy to clean, offers three height adjustments, attaches to different chairs, and has a three–point harness, built-in abductor, and removable tray.

My Little Seat-Updated 12/2014

First Years Learning Curve Reclining 4-Stage Feeding Chair-We started using this when Maya outgrew the Fisher Price Booster chair. It was great and inexpensive. It’s not portable like the Fisher Price Booster chair, but it acted as our primary eating chair at home for a while. It reclines, has a three-point harness, removable tray, built in abductor and offers two height adjustments. First Years makes an “on the go” chair that may work for your child. It looks like the old style Seat 2 Go. Here is the link to it.

Stokke Tripp Trapp Chair-This was a surprise option that we found at our friend’s house recently. This is the chair they use for their toddler (who does not have special needs). I thought there was no way it would be appropriate for Maya. Surprisingly it was and we were baffled by why it did work so well and better than the Seat 2 Go that we brought with us for her to use. We didn’t order it for our home because we wanted an adaptation that could be added to our existing chairs. It may be worth trying one out with your child. In fact, Special Tomato makes a chair that looks similar but I never thought it would be work for Maya until we tried the Stokke.

Fisher Price Infant to Toddler Rocker-We began using this in our living room when Maya was very young until she outgrew it. It was a wonderful option for her to use in front of the TV or as an alternative to lying on her back.

Chill Out Chair–We have never tried this chair. I heard about it from another parent on a CP forum. There are two styles a Rock’er and a Roll’er (which is on wheels), three sizes, many color choices, and both include an ottoman which can be used as a side table. The company’s website states that its V-shape design promotes support for the user instead of belts/restraints. They also say it is lightweight and easily transported. Since it is currently a unique offering on the special needs market I wanted to present it here as an option. It is expensive and likely not covered by insurance, but the few parents who had commented on having one (on the forum) or trying it out, said it was awesome. If you have this chair or know someone who does, please give us your feedback to help other families. ***Update-We have received more than four responses about the Chill Out Chair all which have been rave reviews. I received a catalogue on 7.17.2012 which had a new item called the “Cozy Chair and Ottoman Set” by the children’s factory. It looks similar to the Chill Out Chair but is not exactly the same. It does not have an option for wheels or other accessories that the Chill Out Chair offers and it is limited to children age 2-6. It may work for your child though, and if it does, you will have saved a lot of money!

S.W.A.S.H Brace-We have found this to be a great piece of supportive wearable equipment (orthosis) especially for independent sitting during circle time. It was prescribed by a team that included an orthopedic surgeon, physical therapist (both were in the same room making an assessment) and an orthotist. The problem is that it can be difficult to put on and take off (for trips to the bathroom) and Maya becomes irritated wearing it especially when we have used it with other pieces of adaptive equipment along with it. I still think it is a wonderful option. It was developed by the parent of a child with dystonic CP who had problems with leg scissoring. It holds the hips in a manner that may offer the child greater stability in sitting. Also, the child can move and sit independently and freely while wearing it. Here is a list of goals that were used in designing the SWASH brace (from their website):

1. Increase abduction and stretch hip adductors to improve hip alignment

2. Prevent excessive adduction during sitting, standing and walking

3. Optimize sitting and standing posture

4. Achieve the above goals with an automatic transition from neutral (walking, standing) to abduction (sitting)

Lady Bug Corner Chair-We used this at school when Maya was under three years old. I remember really liking it but I don’t recall a lot of the specifics of what worked for her. I know it was used at her therapeutic pre-school during speech therapy.

Platypus Activity Chair-This is a great product, and Maya’s grandparents have it for her to use, but we opted for the Kaye Bolster chair at home because her pelvis kept sliding forward in it. It has many options for use at home and school and has a removable tray and an option for wheels. The chair is by Snug Seat and I like this company because of the whimsy they have brought to adaptive equipment. They use appealing names, fun colors, and we have found several products for Maya (not for sitting) that have worked well for her.

The Wombat HighLow Positioning Chair– The Wombat Highlow Positioning Chair by Snug Seat, has a hydraulic lift/lower mechanism. This was the first characteristic of the chair that I was drawn to exploring because I saw it as a possibility for use in multiple places within our home. We tried this piece of equipment when Maya was about 2.5 years old and she was afraid of the hydraulic noise (she had a strong startle reflex at this age). It was also too heavy and expensive, and I found it intimidating to adjust. I like to try and purchase items we can use beyond our home and this one is not made for easy transport. If it were less expensive and if she had not been afraid of the noise, we may have ordered it. Since we didn’t know how long Maya would need something this supportive we considered other options.

More on the Wombat:

I wish all wheelchair users had the option to lower or raise his/her wheelchair to meet a variety of table heights. I have seen a mainstream market high chair that also has a hydraulic mechanism (like you see at the hair salon). It is by Boone. Here is a link to it. I have seen it in person and thought it had a lot of possibility. IT was heavy, but not nearly as heavy as the Wombat. I would have purchased it if Maya were not so close to outgrowing it.

If there is a product designer reading this, how about merging some of the characteristics of the Wombat and Boone Highchair? Sometimes I wish the special needs product designers used mainstream products as a guide for new product designs. They are not always so far from what we need. The manufacturer of the Bumbo realized the market demand for their product within the special needs community and created a larger size.

Floor Sitters

I will be honest here and let you know that I am not a fan of floor sitters for very young children. They give kids little (if any) opportunity to bring objects to themselves, which in our case, Maya was able to do even though she could not sit up. I often preferred having myself or another adult support her in sitting for the brief moments when she did want to interact with her peers or play with a toy, so that she could practice independent moving. It may be a good solution for your child to participate in circle activities (at the library or at school) or for sitting for brief periods of time when interacting with other children or adults. Now that Maya is older, if she was still unable to sit during circle time, a properly fitting floor sitter would be a great way to include her independently with her peers. There is a broad spectrum of costs associated with floor sitters so choose wisely balancing cost, with need, and an appropriate fit.

**There has been a voluntary recall of the Bumbo seat (8/12). Since there have been ongoing concerns about the Bumbo’s safety, I feel it is appropriate to remove my review of the Bumbo and its special needs version the Childrite Therapy Chair. There have been no recalls on the Childrite Therapy Chair that I am currently aware of.

Rifton Corner Floor Sitter-This is actually one of my favorite companies but this is not one of my favorite products for Maya. This sitter did not support her well and I still have memories of her looking like she was bound to a board rather than having more freedom to use her upper body. Despite the two buckles for the chest and waist (BTW-more buckles do not always mean better support), her pelvis kept sliding forward preventing good use of her hands and arms. It does offer a pommel and this may have helped. It also blocked her peripheral vision which bothered me, but as I have said before, there are trade-offs with all equipment. If you are looking for your child to have some independence while sitting, then this could be a good solution. I stopped using it when a child at daycare accidentally knocked Maya over while she was sitting in it. We did not see this happen, and the chair appears very sturdy, so I would not be dissuaded from using it based on this one comment. It is something to keep in mind though when considering how and when it may be used. Perhaps a mainstream daycare program with 2 year olds was not the place to use this product without a personal aid. She could have been knocked over whether she was sitting in the floor sitter or not. At the same time, I think I would have felt better if she was not strapped into a piece of equipment that prevented her from using her body in a natural way to protect herself (something that Maya is able to do well).

Special Tomato Soft-Touch Sitter w/Floor Sitter Kit-This item is discussed above (without the kit) and has a kit which allows it to be used on the floor. I love multi-purpose products because they save on room and cost by eliminating the need for another piece of equipment. If you have ever seen Tumbleforms at your child’s therapy center, this is a very similar product. In fact, I believe the founder of Special Tomato used to design Tumbleforms. I do prefer the angled positioning of these types of floor sitters to the more upright sitters for Maya. She typically appears more comfortable in them.

Update 1/12/2013

Cube Chair and Edutray-This is not technically a floor sitter but it sits low enough to the ground I thought this was the best place to discuss it. It was a recent find and one we discovered through serendipity when Maya mentioned sitting in a cube chair during a therapy camp. I inquired about it and Maya’s physical therapist showed one to me. We both looked at each other with great doubt. It didn’t look supportive or appropriate for her at all. It can be used on two sides which offer different heights above the ground. We were surprised when we tried it out with her and it wasn’t terrible at all. In fact it had potential. I made some modifications to the base to give her extra support. I was thrilled when I saw that there was an option for a tray! Maya loves it and recently someone suggested trying it for dressing. It has made helping Maya get dressed so much easier since I can sit on the floor and she is close enough to the floor for me to interact with her at her level and save some strain on my back.

To view and post user reviews about standers, wheelchairs, and wheelchair cushions, you may wish to visit www.usatechguide.org.

A smiling mother supporting her laughing daughter from behind as they stand in a room with colorful glowing shapes and pictures

“Mommy, Will I Walk When I Am Older?”

May 20, 2012/in CP Daily Living/by cpdailyliving

I knew it was going to happen, I just wasn’t expecting it to happen when it did. When Maya first spoke about wanting to walk she was three and a half years old. It felt so surreal that for a moment I was waiting for a director to yell, “Cut” so I could quickly run off of the stage. But I was the director and I couldn’t run. Despite successfully traversing many difficult challenges in the past, this exchange stole my breath. It still does a year and half later.

Parents of children with disabilities become adept at thinking on their feet to meet their children’s needs even amidst very challenging circumstances. There are practical puzzles for us to solve such as how to fit into a small bathroom stall with a wheelchair. Then there are social situations to navigate like explaining to one of my child’s peers why she still wears diapers in a way that hopefully leaves Maya’s dignity intact. This, however, was very different. I suddenly found myself choking on my own empathy and grief and unable to quickly find the words I wanted to say to her.

In that fleeting moment many different thoughts and feelings moved through me:

*I was thrilled that my daughter was being so open with her feelings and had the courage to share them.

*I realized her bad mood had less to do with her being stubborn and more to do with her feelings about watching people walk while sitting in her wheelchair.

*I was caught off guard and nervous about responding to her in a helpful way.

*I was facing my own anxiety that I had pushed out of my mind about what kind of mobility she would or would not have in the future.

I was trying to process these issues at lightning speed so that I could respond with enough clarity to quickly take away her pain (and in turn some of my own). I wanted to fix Maya’s feelings about her mobility challenges by providing her with a “perfect” answer. I didn’t want to discourage her and yet I didn’t want to give her false hope that she would potentially feel angry about later. What I painfully faced in that moment was the realization that I didn’t have the power to fix any of it nor did I know the answer to her question.

Two days ago Maya asked the walking question again (and it has come up a few times in between). She is five now and she asked me as casually as if she were asking for more cereal. She was staring at me, analyzing my body language, and waiting for me to respond. Nothing gets by this little girl. What she lacks in physical ability, she makes up for in emotional intelligence and acute observation (one of the benefits of being less mobile than others and having an active mind). She is astute enough to detect a longer than normal pause when someone is answering a question she feels is important. I would get away with nothing.

So, what did I say the first time and what do I say now? I chose then and still choose to answer her honestly. I cannot do it any other way. If I attempt to hide something from her, I know she will call me out on it.

I tell her that I hope that she will walk but I don’t know if she will. Perhaps I should not propose even a remote expectation. Who knows what is right? I go on to tell her that we will support her as far as she can go in her abilities. This is the most honest yet compassionate statement I can offer her. I wish I could offer her more.

With time it has gotten a bit easier to navigate this terrain. I have more awareness about what she needs from me. Initially, I thought because she was so young she wouldn’t be thinking about all of this. However, after the first time she asked me about walking, I realized that she was more in tune with herself and her environment than I gave her credit for, or that I was prepared to face. Now I have developed some ideas about how to answer her and I am becoming more comfortable being in the awkwardness of these exchanges.

Despite these being difficult conversations they offer an immense opportunity for Maya’s emotional growth. We are able to help her understand how she can better cope with her limitations. We help her learn about where her power lies in this struggle; in doing whatever she possibly can for herself. Regardless of what mobility issues Maya may ultimately face, this is a vital piece for her to understand and accept in order for her to successfully participate in this world. At the same time it is during talks like this that I remember to openly acknowledge how hard all of this is for her because I know sometimes she needs to hear it.

We want to help Maya focus on celebrating the goals she has achieved, and will achieve regardless of where she lands. I understand now that in order think about her mobility issues in this way she needs to face her authentic feelings and move through them as they arise. By allowing her to do this we will support her as she navigates her way to a healthy place of acceptance about herself, her life, and her disability.

I know many more tough conversations are ahead. Blake and I may not always have the best answers or the “right” answers, and I certainly wish I could speed dial God sometimes. But as I go further on this journey I learn that our path is less about getting it right, erasing a problem, or filling the space between us with an arsenal of positive outlooks. It is more about being there with Maya and her feelings, asking her about them and having the strength to do it.

Blake and I will sometimes ask each other “How do you think we did?” We can’t be too hard on ourselves. This is tough stuff. This is life, life with our unique little girl, and we are learning as we go.

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