Maya Determines When to Talk About Having Cerebral Palsy

I learned something important on our recent trip to visit family and friends. In the last six months I have been struck by how open and jovial Maya is when talking to people about having cerebral palsy. Whereas she used to become angry and feel that everyone was staring at her, she has now moved through those feelings and ideas, and emerged with a new strategy. What I didn’t know until last week is that rather than telling people about her CP as a source of pride, she does it to try and prevent people from focusing on her disability.

I mentioned in a recent facebook post that we met a man named Don who sat next to Maya on the airplane. He thought she looked like a friendly flying companion and he had not flown on an airplane in twelve years. Maya was her chatty self and welcomed Don to our row. She gave him the details of traveling on the plane, her likes and dislikes, and all kinds of tidbits about herself that he intently listened to with a warm heart and smile. She even explained to him what kind of medicine she was taking as I took out her bottle of seizure medication. What struck me was that she didn’t mention anything to him about having cerebral palsy. This was unusual for her especially given the amount of time she had to chat with him. Often this is one of the first things she mentions to people.

I innocently questioned Maya about this and was loud enough that Don could hear. As the words left my mouth I immediately realized how foolish I had been. I had been so proud of her for taking the initiative to be open about having a disability, that I believe a part of me was trying to encourage her to do the same with Don. It was a source of pride for me that she understood and could explain to people that she had cerebral palsy and was accepting of this part of herself (at least for now). My heart sank when I saw her face and I knew immediately that I had made a mistake. I talked to her quietly for a few minutes about it. I messed up. I didn’t mean to, but I did. I never realized how discerning and strategic Maya was being in discussing her challenges with people. Plus, it just wasn’t appropriate for me to bring this up. On the airplane, she is in the rare position of not having any equipment or supports that make her appear different. Her look of disgust and embarrassment said it all. She was happy to be free to look like other kids for a rare moment and I took it away.

I apologized for the mistake I made and she immediately changed the subject. She forgives me, but I will never make this mistake again. I never realized how deeply she processed her surroundings, and was making strategic decisions to try to be more comfortable feeling different. She isn’t particularly proud of her CP, she just doesn’t want people staring or belaboring the issue, so she puts it out there to discuss right away.

I am so sorry Maya. Mommy goofed and I won’t do that again (although I am sure I will have many more things to apologize for). We are all learning how to cope in various ways, you as a kid with challenges, and me as your mom who wants to support and guide you in the best way possible. Sometimes I learn or take cues from you. Thank you for being patient with me.

Here is one of those wonderful moments where Maya is equipment free and enjoying just being a kid:

Maya’s “Cute Heaven”-An evening of multiple milestones

Maya thoroughly enjoyed herself last night. After seeing her second play, “Charlotte’s Web” a few months ago, she decided she wanted to give theatre-going another try and see “Rapunzel”. So, yesterday evening we headed to the theatre and as soon as we got into the building another parent asked Maya if she was excited. She said, “No, I am nervous.” Apparently the woman didn’t hear her or expected a different answer because the woman said, “Yes, it’s going to be great.” It’s hard for many people to understand how something like a play could overwhelm a person’s nervous system. Sensory integration seems to be an issue for many kids these days, but it definitely isn’t the norm. Maya has to prepare herself for an adventure like this. She is afraid when the lights go down, she has trouble following the quickly changing scenery, and the music and noise often startle her.

When I took her to her first play last year she barely paid attention. She looked around and focused mainly on what her friend beside her was doing. I tried to point out different parts of the stage scenery and help narrate what was going on, but she didn’t seem interested. Perhaps there was too much information for her to process at once. Fortunately, we are much better prepared now for the variety of responses Maya may have to new experiences: fear, boredom, being overwhelmed, screaming, etc.

We try not to fill ourselves with expectations when planning activities because it creates pressure for everyone. We do what we can to help Maya negotiate new experiences. However, it’s difficult to find the balance between helping her learn and experience being successful by moving through her fear, versus reinforcing it further. As she gets older we see Maya pushing herself to work through her nervous system sensitivities without our input. Sometimes she is able to navigate challenges on her own, but other times she ends up retreating from a circumstance feeling too overwhelmed to continue. We don’t always know which outcome is likely so each new activity requires collective patience, creativity and sensitivity.

We have found that on vacations (territory ripe with new experiences) it’s been her older cousin who has given her the courage to push through with success. Other times we have found ourselves in the middle of a tornado of emotions and overstimulation, where our words and intentions just add to the chaos she feels and expresses. In these cases it isn’t until much later or even the next day that Maya is able to piece together what she was feeling and discuss it with us. It’s like a storm that needs to pass in order for her to achieve any clarity.

With all of this background, you now can understand my joy as I watched Maya during the play last night. She not only listened to the dialogue and paid attention, but she also integrated the music, the plot, the sounds, her fears, her toileting, her hunger, her vision, her wheelchair, her tone, and on and on. I wanted to give her a standing ovation. At the end of the play she turned her wheelchair around full circle and started wheeling herself out of the theatre. In the last week she has been eager to try and push herself in her chair whenever possible. Gosh, have we come far from six months ago when everyone wondered if she would be able to propel a wheelchair!

After leaving the theatre we went to get Maya a sweet treat that she asked for several times during the play. We found a nearby coffee shop that also had a gift store. She said she wanted private time and wheeled herself away from us. As we both watched her I thought to myself that her body language said, “I got this one guys.” At one point when she crashed into something in the store she yelled to her father, “I’m OK Dad,” a clear signal that she knew he was watching and didn’t want him coming closer (we were watching her from a little distance away). She said she was in “cute heaven” because everything in the store was so cute and she wanted to stay there and enjoy it (alone). I think more than anything else she felt excited about being able to enjoy the play and her newly found freedom in moving through space without her parents’ interference. I can only imagine how wonderful that must feel to her. Keep going Maya; we are behind you, beside you, and we are here to guide you whenever you need us. We know it isn’t easy, but your rare blend of self-acceptance and self-confidence are leading you and us to new places.

 

 

Are CP advocacy efforts petering out because of confusion over which organizations to rally around?

Repost from Facebook post-April 13th, 2013

I am going to keep going with my thoughts and intention about bringing clarity about the US CP support/advocacy organizations. There will always be multiple organizations supporting a cause or trying to address a problem, but right now I am wondering if some of our private CP organizations can come together to begin to more effectively and efficiently mobilize our community to address some of the issues they are working to address separately (including CP Daily Living).

With lack of funds and support, the small list of organizations dedicated to CP research, funding and advocacy in the US, are struggling to meet their independent missions with a lot of muscle. Can they be more effective working in tandem on a regular basis? Can unifying their efforts bring our community together virtually and in person? Some of these discussions are underway which is exciting, but I want to ensure that for those of you who wish to add your voice, you have a space to do that. Some of the leaders of these organizations follow our page so certainly sharing your point of view here is helpful.

I personally see so many CP community issues that need to be addressed, including causation research, working on the language and approach to defining CP in the individual, lack of funding for advancing treatment, a need to create more standards of care specifically for CP (i.e the Botox article I shared the other day), addressing the needs of our adult CP population, addressing healthcare coverage gaps.

I want to get our community moving full speed ahead as efficiently and effectively as possible and it’s going to a lot of work to get us going because CP awareness and funding is needed.

Is a lack of understanding of independent missions or communication with families from some of these organizations part of the problem? Will pooling resources and working together help gather our community virtually and literally? Have parents and people with CP felt that they haven’t had an opportunity or know where to speak and with whom about these issues that affect their daily life? Besides RFTS I haven’t seen national organizations attempt to openly include input from parents, families, and people with CP as part of furthering the efforts of the greater CP community? Parents and families are a critical component of mobilizing change and support for disorders and other medical diagnoses. Cynthia has identified this critical component and brought it front and center to those people and organizations who were previously not focused on considering our input. Sure, RFTS focuses on the pediatric population, but her advocacy work impacts everyone with CP. She has been able to part the waters for other organizations to see the value in families, children, and adults with CP participating in a larger conversation.

At what point do we need to consider and make it our business to discuss what is and isn’t being done for people with CP and their families? I am making it our business today. You can begin by sharing your ideas or passing this post around and generating awareness and conversation. I see the value in getting some short-term projects going, but I also see the importance and necessity in getting smart about how we gather our small batch of funding resources and allocate them as a larger community. If we don’t discuss collaborative efforts as a community and enter into the conversation, we may end up with many tiny organizations continuously cropping up to address what they feel is independently important, but perhaps without the funding resources to effectively support any of those independent passions. I would like to see our community try and come together on what we largely can agree upon, and begin to organize our efforts so that we may be able to generate support for effectively addressing some of those issues.

Do you have thoughts or questions? Share them with everyone.

-Michele

The Open Hearts of Special Children

Repost from Facebook April 7th, 2013

Yesterday was one of Maya’s very good buddies’ 7th birthday party. There were a few kids there that Maya knew from her former therapeutic pre-school. Maya’s dad told me today that he had been a little worried about her at first. It was held in our friend’s backyard and she was in her wheelchair, and he wasn’t sure if she would be able to comfortably involve herself with the people and activities there. He then went on to tell me that he couldn’t believe how she and her two buddies played together. They each have their own unique challenges, and yet their instincts to care for, listen to, and include each other was powerful enough to melt this dad’s heart. These two dear friends of Maya’s welcomed her onto the trampoline and other activities with open arms (literally). How many life lessons could be learned from these girls?!! Writing and thinking about it now makes the tears flow. I wish we had gotten a photo of the three of them together. This is a smile that comes from deep within and I will cherish it and the memories of this day forever.

What Is Guilt Doing To You?

A repost from Facebook:

Many parents of children with CP (and other disabilities) carry tremendous guilt. It’s not something that plagues the parents who are just beginning this journey, but I also hear about it from parents with tenure on their path as well. Guilt is a form of self-punishment we can knowingly and unconsciously inflict upon ourselves every day. What are your daily mantras? What do you repeat to yourself in an effort to harm yourself? This kind of self-abuse will slowly yet surely pull you down and create all kinds of chaos as it pours into your external life. It can also drive us to fight relentlessly to push our children and perhaps make them feel inadequate in our well meaning attempt to heal them and perhaps in some way relieve us of our own pain. We are human and these are very understandable and human coping strategies. We all participate in these strategies in different ways. This is why I repeatedly say that accepting your child’s diagnosis is so intimately involved with self-healing. One of the most challenging aspects of life is finding the strength and ability to accept ourselves in our own humanity, mistakes and all. In our society I see how often we reward and dole out punishment based on outcomes. But what I have learned is that so often we are along for the ride, and despite our intentions and efforts, outcomes may have little to do with what we contributed. We can be quick to stand up to take praise when things go “right”, and we also are quick to beat ourselves up (and others) when life takes unexpected and painful turns.

Please don’t make your journey any more difficult by blaming yourself. Perhaps begin by getting in touch with your heart and your mantras. Allow yourself to express what you feel and think unfiltered so you can at least connect with the root of your pain. This is a critical step in beginning to accept yourself and your feelings. A turning point in my healing was to share the fear behind some of my guilt with my husband Blake. I finally gathered the courage to face him and hear the truth of whether he blamed me for what happened to Maya when she was born. I also wondered if the family whispered behind my back and blamed me as well. For some of you the answers you hear and are met with may not be comforting. For others you may be surprised and tremendously relieved. Whatever the outcome, it can create a foundation for tremendous healing if all parties are willing to explore their feelings. This is frightening and painful. This is the challenge of deep self-acceptance. Can we get to a place where we can rise above the thoughts and ideas of those around us and move into a place where we begin to forgive ourselves? It’s a great gift when the people we feel most connected to can offer us acceptance. Sometimes getting to this place means we all must articulate (even if it sounds horrible) what we have been carrying in our hearts and minds and be willing to move beyond it. If you haven’t been able to forgive yourself or find acceptance from those around you, I am offering you that today. I am taking you by the shoulders and lifting your chin up and telling you, “You are loved and you need not punish yourself any longer.”

May love support you today and always.

-Michele

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

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

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

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

Here are some facts about cerebral palsy:

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

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

Discovering Your Child’s Talents

Repost from Facebook: March 12, 2013

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

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

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

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

-Michele

We Lost Our First Tooth!

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

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

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

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

Throw the Timeline Away!

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

Big hugs on this challenging journey,

Michele

Reflections On Our First Wheelchair Purchase: Lessons Learned

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

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

How we ended up choosing the wrong chair:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Copyright 2013 CP Daily Living-share freely with authorship credit