A black compass face with the silver needle pointing towards the word “Growth”.

Can Buddhist Principles Help Me Navigate Another Seizure?

As long as I perceive a forward momentum in Maya’s growth and development I feel accepting of what we face together as a family each day. This is what keeps me feeling grounded. I guess this is why my emotional dam eventually broke when Maya had a prolonged seizure the other day that required a stay in the hospital. I was basking in the light of progress and hope when CABOOM; the canon fired and I shot out of my current reality and ended up in a far different emotional space.

This seizure felt like a terrible setback replete with a list of unanswerable questions that I wanted the answers to. Why did it happen? Maybe it was that much discussed “super moon”?, Could we have prevented it? Why, What, Maybe..What if…?; an endless swirl of thoughts and questions in my head along with a choking feeling in my throat.

Whenever my feelings and thoughts overwhelm me I recall a class I took in college on Buddhist ethics. If I had to guess why my mind goes there I would say it is because I am trying to find a way to escape the chaos in my head and the sadness in my heart. A central tenant of Buddhism is the release from suffering.

There is a Buddhist concept that attachment is the root of all suffering. It is the idea that by attaching and relying emotionally on material objects, people, ideas, and circumstances to remain a certain way, we will suffer when they change to something less satisfying to us (this is my very watered down version). Therefore, we live through a roller coaster of emotions that shift and change because what surrounds us is constantly in motion.

According to Buddhism you must transcend the mind (the origin of attachment) in order to transcend suffering. So as a human being who often analyzes and tries to think my way out of pain, I have landed smack in the middle of disappointment and suffering.

I get Buddhism’s point and recognize my delusion, but talking about it is not the same as integrating the concept into my psyche. Even if I spent my life in a monastery, I don’t think I could meditate/pray myself into that space of emotional detachment accompanied by compassion that Buddhism speaks of. But, it is a lofty goal and one I look upon with awe: not in this lifetime though (Buddhist joke).

So then there is the reality that most of us live in where emotional health is linked in various measure to how things are going around us; our jobs, people’s opinions of us, the health and well-being of our family etc.

Ah, if only I were like those Buddhist monks. The closest approximation I have to their nirvana is the big “D” word: Denial. Denial is this lovely coping mechanism where I pretend that everything around me is fine, peachy, etc. when lurking within me it is anything but ok.

I go through the numb/denial phase for about five days after Maya has a seizure. It’s a pattern of mine. During an emergency I am your woman. I can think, plan, act, and even make a few jokes. But my family has been through this before and my husband and I are all too familiar with how my strength and coping skills succumb to a different phase; me dragging my physical body around behind a big bag of emotional presents waiting for me to open and process.

So here I am in this post denial space processing these emotions; feeling my way through the pain, disappointment and guilt that always seem to visit me after one of these intense experiences. By this point Maya is doing well and we are getting back to our routine, so I appear a bit strange to my family and close friends who are wondering what could possibly be wrong now that the seizure has passed and Maya is ok. I don’t feel like telling them that I have this quirky yet quite adaptive emotional process where my tears start flowing long after everyone else’s have stopped.

I don’t want to look at these feelings and define and redefine myself against Maya’s challenges and how I relate to them. I would rather take a deep breath, wave good-bye, and say, “check you later”. But alas, these feelings don’t go away so easily after something this big. The canon has shot me so far from my comfortable emotional home that I have no choice but to grab some compass of my own design and start putting the pieces together that will lead me to yet a new emotional vista. I have to. There is no other choice. I cannot stay here and I cannot go back.

Just like Maya must work so hard to make new neural connections that help her put together the incremental steps to accomplishing what comes so easily to others, so must her mother discover and piece together new ways of relating to and managing my feelings about her struggle.

We all have to find our unique way through our dark places. When I have no idea how to move ahead I find comfort in knowing that other parents and people have done it before me and through far more challenging circumstances than my own. This is my mantra right now, my compass. Keep going…keep going… all states of being are temporary; even this one. At least I can find comfort in applying the detachment concept this way, in knowing that this pain too shall pass.

 

 

A man is smiling with a young boy with cerebral palsy as the boy sits on an examination table in an therapy room.

Filling in the Pieces: The Anat Baniel Method & Cerebral Palsy

Please note that the following information is based on early personal experience of the Anat Baniel Method and not based on formal research. This post appears as an entry from the original CP Daily Living blog and is written by a parent and from the vantage point of a parent–not a clinician. It is vital that parents and caregivers discuss complementary, alternative and experimental therapies with their clinical team with respect to goals, safety, evidence and investment–both financial and with respect to time. You may find our treatment checklist helpful in making decisions about whether to proceed with a particular intervention or modality.

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The subject of the Anat Baniel Method (ABM) came up this weekend while visiting some close friends. We were speaking about Maya and her progress, and some of the treatments and modalities that have been working for her. This, along with the recent publication of Anat Baniel’s new book Kids Beyond Limits, inspired me to discuss the work in this week’s post.

So what is ABM? I have had this question posed to me numerous times and I have also asked this repeatedly of practitioners as well. When we first started this work we never felt we were given a good answer. We were told what ABM was not. It is not like acupressure, massage, chiropractic care, or Reiki. Ok, so what is it? From all of the exposure Maya has had, the few lessons I have experienced, and Anat Baniel’s new book, I came up with my own explanation of the work.

ABM evolved from the work of Anat Baniel’s mentor, Moshe Feldenkrais. It is grounded in the principles of neuroplasticity. In the simplest terms, neuroplasticity is the science supporting the brain’s ability to change itself, grow, and form new neural connections. ABM is a non-medical movement modality based upon Anat Baniel’s “Nine Essentials”. Through her work over 30 years and with thousands of people from five days old to ninety years of age, she has found that these “Essentials” repeatedly provide the optimum environment for the brain to notice, accept and integrate new information. This in turn, allows the brain to create more efficient movement, and allows the individual to feel more in-tune with and comfortable in her body. These are precisely the issues I have seen Maya struggle with daily.

In CP the brain, not the muscles, is the problem. So the concept of getting the brain’s attention and providing an optimum environment for it to make new connections makes lots of sense to me. Improve the quality of information getting to the brain, and in turn you will improve the quality of movement and the person’s experience of the world (Move Into Life, p25).

Here’s how you might begin think about the child with CP. Imagine that you are planning a trip and you decide to use a paper map. The first thing you do is to locate yourself on the map. Right? When you travel by car and you are at a rest stop you typically see a “You are here” pushpin. This helps you get your bearings and determine where you are going by knowing what is around you, what lies ahead and behind, etc. Well, now imagine that you did not have a “You are here” pin and you did not know where you were.  Also, half of the map was missing. That would be pretty tough. Perhaps you could figure out part of the information you needed to get where you were going but you would have to improvise along the way.

Your child’s brain is like the incomplete map with the pin missing. Each child develops a mental image or map of his/her physical body by interacting with her environment and defining themselves in relationship to it. Because children with CP have fewer and more limited interactions with their environment and themselves, they are missing pieces of information to help them complete their map.

The following is my way of understanding meeting the child where they are in their understanding of their body. Let’s consider a child with CP whose legs are often scissored (crossed). For this child Anat Baniel may say that the child’s neutral position is scissoring, in contrast to the typical child whose legs would be uncrossed in a neutral position.

That missing information—about what is a neutral position for the legs— may be a problem for the child with CP. First, because the child’s brain probably does not know that the legs are crossed and what this means, the child cannot learn to uncross her legs (the child does not know where she can go because she does not know where she is). The second problem is that the brain is actively sending signals for the child to cross her legs, even though it is dysfunctional for any organized or comfortable movement. This means that the child is not in control of the movement.

When presented with scissoring of the legs the focus may be on stretching or pulling apart the leg muscles (manually and/or with equipment) to uncross the child’s legs. This is contrary to the way an ABM practitioner would approach the child. He would look at the child and ask himself, “What is the brain doing right now?” and try to meet the child in the moment (an important element of ABM). The ABM practitioner would try to bring awareness to the child that she has two legs that can move independently from one another as well as together. Starting from the child’s perspective is completely different from starting from the idea of “This is where I am taking you”. If you start from considering what the muscles are doing, the child’s brain may not have enough information to get from crossing to uncrossing.

How does an ABM practitioner make sure the child gets the information she needs? Basically, (very basically) the practitioner gently moves the child in ways that offer hints or clues about body movements that the child may not be aware of presently. The practitioner might ask the child to do more intense scissoring and then less so that the child’s brain can identify degrees of scissoring (more and less and none). Communicating with the brain about what it is doing in the present moment, along with offering clues about new ways the child may move with ease, allows the brain to create the pathways that hold the intermediary steps. Lots of these steps, gradually assembled by the child herself, lead to new and more efficient movements.

When this is done something wonderful seems to happen. The brain, and hence the child, becomes aware of new possibilities. Now there is a point of reference or a “You are here” pin to let the child know not only where they are starting on the map, but also where they may wish to go from here. I am not a neurologist and I don’t study brain plasticity, but I have my child transformed through the application of these principles. As the child becomes internally more organized, their world does also because they see, feel and relate to it differently.

Why is stretching or forcing the legs apart a more difficult movement? I think it is because the focus is on the what the muscles are doing rather than what the brain is understanding. Perhaps trying to move the legs apart when they are wanting to come together adds additional muddled signals to the brain about what to do. The brain is already signaling for the scissoring pattern to continue. When someone tries to force the child’s limbs apart it adds an additional signal on top of it. This is akin to having someone pull your arms in two directions at once. You end up going nowhere and you feel a lot of pain in the process. The child cannot feel new possibilities of movement because the brain is already putting out a stronger signal. It’s like trying to stop a train going full speed ahead and telling it to also go the other direction all at the same time.

One of the ways an ABM practitioner will get the brain’s attention is through very slow gentle movements. When you approach movement very slowly, the brain notices and processes information it was not aware of before. If you are in your car speeding at 75 miles an hour and you suddenly decide to go 20 mph many things will look and feel different and be interpreted differently.

When an ABM practitioner guides the child’s movements, he allows the child to lead by exploring alternate movements that come with ease rather than force. Without pain and repetitive signaling to scissor, a brief window emerges that allows the brain to sense and perceive new information.

I will give one more example of ABM and how its approach can get to the root of a child’s interference. Maya was having several months of regular lessons and intensives (lessons two times a day for several days). It was becoming clear that she was stuck. We did not know why and we did not think more of the same lessons were the answer. Something was not connecting for her but we did not know what exactly was wrong.

We then had the good fortune of having Maya meet with Anat Baniel. In five minutes she determined that Maya did not know her belly from her back. Everyone in the room stared at Ms. Baniel like she was out of her mind. I thought to myself “What do you mean she doesn’t know her belly from her back? She can point mine out and yours!” Anat Baniel showed all of us that indeed what she was saying was true. We were astounded. Maya had no idea where her back was on her own body and in relationship to her belly. She had not had enough clear opportunities for her brain to differentiate parts of her body and accurately map them. This has nothing to do with intelligence, but rather opportunity. Since Maya is articulate it was not easy to pick up on this problem because she would talk about bellies and backs. She omitted her own. Maya was moving around the world with a “phantom torso”. How could she even begin to understand crawling if she didn’t have these key pieces? The truth was she couldn’t and it was not her fault.

We worked on helping her learn about her belly and back and having her feel each part independently in different ways so that this part of her map could begin to be filled in. Once we built this foundation we began to see progress again. Maya was picking up key pieces to help her understand where she was in space. The child (and all people) needs to know and feel where she is in space, in order to know the possibilities of where she can go.

I have seen ABM create the possibility for my child to experience within herself new potentials for her own body and how she thinks about herself and relates to other people. I have heard my daughter say during a lesson, “Wow look at this” when realizing something new about how her body works. The first time Maya rolled over, opened her left hand with ease, and got onto her knees were all during ABM lessons. We have shed tears watching the beauty with which she moves, the joy she feels while doing it, and the confidence she exudes in discovering her own hidden potential. To observe these transformations is astounding. Our feelings about this work come from a genuine feeling of gratitude that this work exists and has helped our child acquire new and lasting skills.

There have been times when we thought maybe we needed to stop (and did) because results were not forthcoming as quickly as we or our practitioners expected, or because the pace of the lessons seemed too intense for Maya. We thought the lessons, along with traveling to them, may be lowering Maya’s seizure threshold*. At those points we have stepped back and reevaluated what we needed to do or not do. (See the “Advocating for your child” section of the website for a longer discussion of how important it is for parents to take control of their child’s treatment).

ABM has worked for us over time: it is the trunk upon which we structure Maya’s other interventions and conventional therapies. We are grateful for the opportunity to have Maya experience its benefits. There are not a lot of practitioners however, and ABM lessons are typically not covered by insurance. This is why it’s very important to determine your goals, your budget and establish a timeline for trialing this modality and any other experimental or alternative approach you come across. In our experience ABM did not offer a “cure”, but in the early years it certainly offered hope for improved function and new possibilities for our child.

Update May 26, 2013: As we continue to observe Maya’s development, we are finding that she needs ongoing maintenance and consistent reminders about how to retain the new information she is learning. The brain has a tendency to revert back to old patterns of movement, so the challenge is determining how many lessons will allow Maya or any other child to move beyond a particular movement tendency. We have been fortunate to experiment with how this works for her since my mother-in-law became an ABM practitioner. She doesn’t live near us, but when we visit one another she is able to work with Maya. It’s been a process to discover how to  support and “protect” the benefits of her lessons, while also considering how sustainable this is for her and for us. Can her body handle it? Can our wallet? Making these decisions can be tough especially since lessons often enable Maya to move in ways we have never seen. However, no one knows how long a child will require them. A few years? 10 years? Her entire life?

One of my suggestions to Anat Baniel’s staff has been to develop a shorter and less expensive parent training program for parents to learn how to work with their children at home. This would empower families to provide ongoing support to their child rather than waiting for the money and time to coordinate the next lesson or next series of lessons. There are many children who are able to generate momentum for  building skills in between lessons, but for Maya, we have seen less of this in the area of gross motor development, her greatest challenge. At the very least I want to help her solidify the ways of moving that she is learning during lessons so that these possibilities become her new reality.

* Note: Although we have observed the combination of ABM lessons and travel seem to lower Maya’s seizure threshold, this does not mean that ABM causes seizures (or that we are saying this) or that your child will have this response. Every child is different and seizures can often be random. In our case, Maya’s seizures are infrequent and it has been a bit easier to identify some potential triggers. Nevertheless we still have several variables to tease apart but we feel our experience is worth noting and keeping in mind if your child has a seizure disorder. We always keep a log of Maya’s seizures and I think it is important to do this so that if some patterns emerge around activities, food, travel, illness etc., you can discuss them with your child’s neurologist. When I spoke with Anat Baniel via e-mail about our concerns and observations she said she has never known of a child she has worked with whose seizure disorder appeared better or worse from having lessons.

Visit to the CP Daily Living homepage

 

A young girl with wavy brown hair and wearing a white vest is laughing as she leans back in her white chair near the window.

Be as Persistent as the Sun

Welcome to our site! I was ready to launch this project a year ago. My intention was to create a website for parents and caregivers of children with cerebral palsy. Each time I got the motivation and inspiration to pick it back up, “Maya” (as we shall call her throughout the site) would have a seizure that required a hospital visit. At that point, the last thing I wanted to do was think more about her condition. I also felt vulnerable in sharing myself so openly with other people. I am a very outgoing and outspoken person but I am also very private. 

As we have continued on this journey as a family I have discovered the importance of using my voice to help my child and I believe I have done this successfully and positively in a variety of forums, circumstances and relationships. At the very least perhaps you will find value and camaraderie by me sharing the discoveries I have already made while stepping out of my comfort zone. Cerebral palsy presents in uncountable ways and the journey is always unique, but there are commonalities and struggles we all may relate to in tangential or sometimes even in profound ways.

So many people have said to me, “I am sure you have read, or heard, or seen the movie about…” and often they do not even hear me say “no” I have not. I have the type of personality where I make it my business to know whatever I can to help my daughter but I have my own way of doing it and I like it to be quick and thorough. There is so much information out there I could not possibly attempt to familiarize myself with all of it. 

After our daughter was born I would periodically review the list of milestones provided by the pediatrician and would avoid torturing my psyche by not reading entire books written about milestones. My approach has always been to surround myself with the best doctors, therapists, and professionals I could for my daughter, and with whom I could have a good relationship and gather relevant and accurate information. I aim to collect the most important information I need to protect and care for my daughter and I seek out details later when I feel it is necessary and appropriate. However, I have continued to come up empty-handed when searching for a website on cerebral palsy that I felt addressed the heart of what concerned me. With this in mind as well as the limited time people reading this may have, I intend to create a space with a couple of ways of accessing information. I offer parents and caregivers eager to know the facts, and those who are overwhelmed, with a central location to access pertinent information that you may search by subject, as well as our personal experience and how it relates to these topics.

My greatest healing and relief has been through the often brief, yet genuine moments of connection I have had with other special needs parents. I am constantly amazed by the strength, humility, love, and pieces of invaluable information I have learned from parents. There have been times where it was knowing that someone else had successfully made it through to the other side of a challenge I was facing, that offered me the hope I needed.

It is my personal desire to offer you a hand through cyberspace, to know that you really aren’t alone, that someone does understand or can relate to your pain, your joy, and your occasional feelings of discouragement. This can sometimes feel like an isolating journey and I hope to make it less so.

I am not here to say I have all of the answers or that my life is more or less difficult than someone else’s. Some days I feel less than successful in handling the challenges facing me and I have been fortunate to have a wonderful network of support and love around me. It is because of this love and support that I feel the obligation to take on this endeavor and share whatever I can with you in hopes it offers you some healing. Whether it is quick access to information, resources, or a connection to my family, I hope you will find something here that eases your travels on your unique journey.

From our family to yours!

Michele

A smiling woman stands next to a smiling young boy, who is seated in a wheelchair that is being loaded onto a white bus.

National Mobility Awareness Month

READ HERE TO FIND OUT HOW YOU MAY BE ABLE TO WIN A WHEELCHAIR ACCESSIBLE VEHICLE!

National Mobility Awareness Month will be celebrated throughout the month of May. The purpose is to educate the public that people with disabilities constitute the 2nd largest minority group in the United States. Over 18 million people in the U.S. and Canada have mobility issues.

The link to the website below is where you will find stories about people with disabilities who are dealing with and overcoming their mobility challenges. They are also asking people to submit their stories to be showcased by national and local media over the upcoming months. Favorite stories will be voted on by your friends, family and peers, and the winners will be awarded a new customized wheelchair accessible vehicle.

http://www.nmeda.com/mobility-awareness-month/local-hero-contest

A laughing young girl seated at a restaurant table, with a Christmas tree in the background, holding hands with Minnie Mouse.

Disney World Travel

Taking a vacation to Disney World was one of the most enjoyable and manageable trips we have had with Maya. The accessibility and accommodations that were made for her disability were positively fantastic. Thank you Disney for your exemplary focus on special needs.

My husband was not looking forward to this trip but we wanted to do it for our daughter. He does not like crowds, nor does he enjoy the “Disney experience”. Fortunately, Maya’s face in this picture says it all and melted away his irritation for most of the trip.

Maya loved the characters and being with her older cousin. She was comfortable. There was minimal stress associated with transitioning from getting onto and off of buses, rides, and into and out of restaurants. They even had designated areas within restaurants that were reserved for guests in wheelchairs and their families (in case other tables were filled). Wow! I could not believe how special they made us all feel. Disney recognizes the need for the entire family to have a break and enjoy each other. Whereas other trips are exhausting because of the constant thinking, planning, and lifting associated with negotiating inaccessible places, this trip was tiring for the right reasons; pure fun. I have told so many people that I felt that in many ways it was easier to navigate Disney World then it is our daily routine outside of our home because of their disability awareness.

There was a lot of planning that went into this trip. Believe me it was not completely easy breezy and there are many things to consider if you plan on going. Regardless, it is wonderful.

Please visit the travel section for specific tips on how to travel with your child. In addition to what you find there we used a book called, “Walt Disney World with Disabilities”. You will find a review of it in the “Books/Media” section of the website. It is a very detailed look at Disney World as it pertains to traveling with someone who is disabled. I highly recommend it. This book coupled with my own knowledge of what makes Maya comfortable when we travel, helped us make this a successful trip. I am so glad we did it, and that we included additional family members to enjoy it with us.

Now I know why so many people with disabilities choose to go to Disney World; it takes a lot of the typical thinking and strategizing out of the day and allows people to focus on having fun!

Five laughing young girls, together in a group, lie propped up on their hands while on the floor in a pre-school classroom.

Pre-School

A group of young children suround a table, laughing & smiling at the camera.Many of us look for childcare and preschool programs for a variety of reasons. Some parents require childcare in order to return to work, and/or to have a break from our care-giving responsibilities. In addition, many parents are also eager (as we were) for their child to have an opportunity to be with other children in an educational preschool setting. There are several different types of childcare options (in your home, in-home daycare, daycare centers, preschools) and you may have a preference for one over another. This is a very personal decision, but sometimes when you have a special needs child, you are faced with having fewer choices. Since our family faced many challenges and limited choices during the first few years, I am providing you with a place to start your search by compiling a list of childcare and preschool facilities who openly market themselves as welcoming our children. You will find this in the Education/Preschool Resources section of the site. If I could not find a facility in your state I provided a link to the state agency that conducts the licensure for daycare facilities, and/or the state office that provides childcare referrals.

We went through so many different hurdles trying to find the right people and places for our daughter but we have found some wonderful people and places along the way. It didn’t help that we moved during our daughter’s toddler years and had to start over finding new resources. I have learned that not all facilities and people who appeared to be “the best” were appropriate for my child. In fact, we experienced much resistance and passive discrimination at a University hospital’s facility that was NAEYC accredited and had all of the bells and whistles. I was so naive in the beginning. I thought if we were reasonable with our expectations and because we had a good-natured disposition, we would be received in the same manner. Weren’t these places and people bound by law to provide “reasonable accommodation”? Apparently, these laws do not always inspire people and places to do the right thing.

Throughout this time I have often felt like Julie Roberts in the movie Notting Hill when she says, “I am just a girl standing in front of a boy asking him to love her.” I do not think I ever felt so vulnerable in my life as I did going to door to door trying to find a pre-school willing to allow our daughter to participate in their program. While searching for a school I often would think of this movie and say to myself, “she is just a little girl, like any other, standing in front of you people, and asking you to love her”.

Perhaps, you will have a positive experience from the start and I hope you will be met with genuine compassion and open arms. If not, do not be disheartened. I have shed too many tears over people’s fear and stupidity when there are people and places out there willing and capable of caring for our children in a safe and stimulating environment. Sometimes the search is more labor intensive depending on how familiar people and places are with ADA guidelines. If you get discouraged contact your local Department of Social Services. There is a federal grant program funded by CCDF and within each state there should be a contact person and team (the name of the program receiving money from CCDF will vary by state) available to provide education and assistance to childcare facilities about including our children or  you may have other local agencies that provides education and resources about inclusion.

Many states are acknowledging the problems both facilities and families of special needs children are facing working together, and have started programs offering additional funds to facilities caring for a special needs child. Before you get angry about a bad experience, remember how little daycare workers typically earn, and the limited resources the facility may have access to (or feel they need) in order to appropriately accommodate your child. Many facilities also feel very vulnerable to lawsuits and we cannot really blame them. We live in a litigious society and when a special needs child or parent walks in the door, many people panic.

Hopefully you will find that the places you visit will make “reasonable accommodations” as they are supposed to according to law. If they do not, or if you do not have a good feeling about the facility, move on and find the one that will. Do not waste your energy taking a moral stand when other opportunities await your child. Would you really want your child in a program when they present themselves in such a negative way from the beginning? At the same time, if you feel strongly about voicing your concerns find someone who cares, who will listen, and a person or place that will do something positive with the information you are giving them. As special needs parents we need to conserve our energy whenever possible; so choose your battles and anger wisely.

Despite my desire to remain objective, there have been times where I just resigned myself to accepting that some people are just unpleasant, and even cruel and I did not hesitate to tell them. The one time we did formally document and report our experience of discrimination at a facility (where my child attended), nothing further was done to remedy the problems we knew existed. Instead, they fired the one staff member who was honest with us about how our child was being treated. So, be mindful of what your goals are if you do file a complaint, be diligent in finding the best forum for articulating your concerns and who they are reported to, and realize the potential need to remove your child from a facility (if he/she is already enrolled).

Sometimes you find help in the most unlikely places. Spread the word that you are looking for help. Talk to other parents (particularly those people who have children with special needs), social workers, doctors, or whomever you know that is a good source of information related to caring for your child. Your ABC representative or other advocacy organizations should have a list of centers and people they have already worked with to help establish inclusive programs. Perhaps there is a place that I have listed in your state that you find interesting but is far from where you live. Pick up the phone and call them. Ask them if they know of facilities or people in your area that could help you.

You may have to have some flexibility with your expectations, but never let that flexibility include a potential compromise of your child’s safety. We made compromises at various times. Our daughter has not always been in the least restrictive environment because the opportunities for something different were not supportive enough. We recently compromised on placing her in a preschool of a different religious affiliation than our own. The childcare and preschool searches have been lessons in patience, creativity, advocacy for my child, and offering up lots of prayers.

For more information and resources on education, pre-school, and childcare please see the Education/Preschool Resources section of the website.

 

A delighted young girl in a floral-patterned stroller pushes an orange bowling ball down a track while a smiling woman watches.

Bowling!

I took Maya bowling the other day (that isn’t me in the picture with her). The experience was incredible. It was the first time we were able to do an activity and not have to actively think about how to have her comfortably and successfully participate. I was prepared for us to sit at the top of the lane with her in between my legs. The place we went to had these fantastic ramps that accommodated her wheelchair. She could sit comfortably and roll the bowling ball down the ramp. They put the bumpers up in the lane so that she would not have any “gutter balls”. The squeeling and grinning made me so happy. We don’t come across an opportunity like this very often. It is the best feeling to see my child so elated by participating in a typical activity and feeling successful while doing it. Check and see if your local bowling alley offers wheelchair bowling.

*For more information about adaptive sports and fun things to do with your child see the Cerebral Palsy Physical Activity & Exercise section of the site.