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

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

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!

Pre-School

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.

 

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 Fun Places & Adaptive Activities section of the site.

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