Insomnia affects the entire family

Maya has always had insomnia and for a diversity of reasons. When she was an infant my husband and I took turns sleeping with her in a recliner at night for six months because she was so uncomfortable laying down in her crib. Now at the age of nine (almost) her sleep patterns have improved greatly from waking multiple times a night for a couple of hours, to mostly sleeping until morning. The difficulty for us now is that she still wakes us a few times a night to help turn her, take her to the bathroom, help her blow her nose etc.. In these cases she often goes back to sleep but we don’t. It’s a routine of sorts that although we are accustomed to, it wears on us as a family more than I realized at times–with me snapping at Maya, my husband and others. Finally this year and after many years of interrupted sleep, Maya’s dad and I agreed to forego some of our privacy and get extra help in the evening (respite care). No, it doesn’t replace sleep but it helps us to have an extra set of hands when our energy is waning at the end of the day. 

Insomnia and CP are not uncommon (it’s also not uncommon in the general population) but there can be different reasons associated with waking that are important to pinpoint and potentially address to minimize sleep disturbances. These may include pain, digestion issues, problems related to nighttime routines, epilepsy, lack of exercise, hormonal causes and more. In Maya’s case she has a variety of issues going on and not all of them relate to CP. What’s tough is that these issues tend to rotate which means that it’s rare for her to sleep through the night uninterrupted.

I bring this up because when Maya was an infant I felt very discouraged, almost desperate for sleep and none of the new mothers I spoke to could relate to the intensity and duration of these nighttime problems. She was deemed a colicky baby with no good solutions except time. It wasn’t just about nighttime waking, but that she wasn’t a napper either.IMG_0455_2 As Maya got older I saw on some of the CP social media boards that other parents were regularly posting about having sleep issues with their children and a long list of responses with “have you tried…i.e–light music, essential oils, eliminating sweets, melatonin, sticking to the same nighttime routine, a warm bath, soft music, and on and on”? without success. It was clear that insomnia was a problem many families had faced and some were continuing to face and often without great solutions.

If you are in this boat, it may help you to know that you aren’t alone. I know, it’s not nearly as helpful as a good night’s sleep. If you have been to a sleep specialist/s and have tried this, that, and the other, you may wish to consider respite care sooner than we did. And although overnight care didn’t work for Maya (she was always excited to see the nighttime helpers) it may be a good solution for you. It’s amazing how much more energy that little bit of support can give you and the entire family. We need to keep up our energy for ourselves and our kiddos. If you can’t get a handle on the sleepless nights, don’t be shy about reaching out for support.

CP NOW a new 501c3—Our next step

 

CPNOWlaunch

It’s been almost four years since I started CP Daily Living. I never imagined that my idea for creating a small resource about cerebral palsy would evolve as it has, into an international hub of information, collaboration, and support. Many of you have sent me touching letters and offered comments of encouragement that have sustained my passion and desire to advance support for the CP community. I have been honored to get to know many of you and your families intimately; hearing of your private struggles, your resilience and your desire for change for people who have CP. There have been countless requests for more support, better treatment options and access to better care for yourselves (adults with CP), for your children or for other family members.

I have spent my time as steward to CP Daily Living, learning about the landscape of CP research and support, identifying where the gaps are in funding and management, and sharing what I’ve learned about advances in the field and opportunities for people with CP to have a better present and future. I have outgrown the practical structure of CP Daily Living and need to move forward with a nonprofit structure that will allow me (and now a team of volunteers) to apply for grants and to expand what I have been able to offer the community and public.

It is with tremendous humility and excitement that I bring you CP NOW—my next step toward advancing neurorecovery, education and support, for the CP community across the lifespan. Over the next few weeks you will hear more about the details of this new organization. Rest assured that CP Daily Living blog posts and social media posts will continue. As part of our grand opening I am offering a Diagnosis Tool Kit. This is the first of many educational Tool Kits that the organization will offer on topics covering the lifespan of a person with CP. It is a comprehensive resource (e-book) that has been ten months in the making; created by a team of parents, clinicians, therapists and researchers eager to address the gap in understanding at the time of the CP diagnosis. I encourage you to check it out the CP NOW website. By joining our mailing list you will receive access to it.

In honor of Giving Tuesday we would be thrilled to have you help us get off to a strong beginning by joining our mailing list, sharing our website, and offering a donation to help us advance our efforts for the CP Community.

 

Michele, CP Daily Living

Be a wise consumer––know the power of the placebo effect!

placebopic

I have been sharing information with parents, families, and individuals with CP for several years now. I have sat in on professional conferences, listened to many of you share your passionate experiences with treatments, and had the opportunity to chat with some very dedicated and level-headed CP docs and therapists. Plus, just like all parents out there, I’m also trying to figure out the best treatments for my daughter! As a result of these experiences I have become very aware of the powerful placebo effect: when belief in a treatment is the sole or partial reason for its effectiveness.

Treating CP is tough. First, you have to figure out what aspect of CP you wish to treat and your treatment goals—pain relief, improved walking or sitting etc. Once you have clarity about these issues people often find that there are very few well-researched, non-invasive and effective treatment options. This realization often leads them to venture into alternative medicine and unproven therapies or procedures, to find new possibilities.

Investigating alternative therapies isn’t a bad thing in and of itself. But when using alternative therapies (and even mainstream treatments) we have to be careful when we evaluate their benefits. This is where the placebo effect comes into play. We often do not have research to help us figure out how much of the changes we see from an alternative therapy or procedure are due to an effect of a treatment and how much was due to our belief in them. This makes a difference because studies have shown that placebos canimprove individual’s perceptions of outcomes in up to 35% of cases*

In addition to the placebo effect, what works for one person with CP may not work for another. So often, parents become enthralled with a particular therapy or treatment and are naturally eager for other parents to try it with their children. But, remember if a parent whose child has CP has a different movement disorder under the CP umbrella, and different goals than your child, they may be sharing information with you that is not comparable to your situation.

There are two points here regarding the placebo effect and they pull in different directions. One is that we need to be careful not to turn our life and our family’s lives upside down, spending all of our money on an unproven treatment when something much less costly and much easier may have an equally positive effect. On the other hand, we need to know that thinking positively about a treatment, having an optimistic attitude and following through with it may bring its own healing benefits. The placebo effect is real and the power of our intention, and that of the people treating us, may be enough to produce results that surprise us all.

Placebos aren’t just relevant to complex issues like CP but have been shown to have powerful affects throughout many areas of medicine. The key is to understand how good the studies are that you are using to guide your treatment decisions, and make sure the placebo effect has been statistically considered in evaluating the outcomes presented. When your evidence is based on word of mouth, or the experience of others, the perceived power of the treatment may actually be the power of placebo!

Here are two articles about the placebo effect that you may find interesting:

  1. Placebo surgery: More Effective Than You Think
  2. Putting the placebo effect to work

* Beecher HK. The powerful placebo. JAMA. 1955;159:1602–6. [PubMed]

 

 

A picture of a row of photographs on stands, with the nearest photo depicting Jennifer Keelan climbing the Capitol steps

The little girl who crawled up the Capitol steps 25 years later: Jennifer Keelan and the ADA

Jennifer Keelan climbing the Capitol steps, photo shared with permission from owner/photographer Tom Olin

Jennifer Keelan climbing the Capitol steps, photo shared with permission from owner/photographer Tom Olin

Jennifer Keelan was 6 years old when she participated in her first disability rights protest. After that she participated in a protest every six months! At age 7 she was taken into custody during a protest in Montreal, and at age 8 she became an iconic symbol of the disability rights movement when she insisted on leaving her wheelchair behind to participate in the famous Capitol Crawl. This demonstration is considered the final act that led to the passage of the Americans with Disabilities Act. Jennifer, along with many other adult advocates and historic figures in the disability rights movement, demonstrated to politicians, citizens, and the world that people with disabilities deserve the same human rights and access to society as everyone else. The following website includes some ADA history and a  famous video about the Capitol Crawl which features Jennifer: http://www.historybyzim.com/2013/09/capitol-crawl-americans-with-disabilities-act-of-1990/

It was a few years ago that I first saw footage of Jennifer crawling up the Capitol steps. I was moved to see a such a young child passionately advocating for her civil rights, particularly since she had CP, the same condition as my daughter Maya. So, when the ADA Legacy tour bus came through our local city this summer I was thrilled to see a large photo of Jennifer that documented this bit of history that I could share with my daughter, now the same age as Jennifer when she participated in this protest. Maya’s face lit up when she saw it and she said, “Mom, she has CP like me?!!”. Since Maya is also a young, outspoken self-advocate she immediately identified with Jennifer and I could see how empowered she felt after hearing Jennifer’s story and seeing this image. While I was sharing this moment with Maya, the photographer of this iconic photo, who also happens to be Jennifer’s cousin, Tom Olin, overheard me and asked if we would like to speak with her! One thing led to another and shortly after meeting Tom, I found myself on the phone with Jennifer and her mom Cyndi, her fulltime caregiver.

We spoke again a few days ago and they allowed me to interview them to honor the 25th Anniversary of the passage of the ADA. It was a surreal experience and immense honor to speak with Jennifer and Cyndi Keelan who are tremendously humble about their participation in the disability rights movement and referred to themselves as “merely soldiers.” I was on the edge of my seat hearing their stories and, at times, I was so discouraged and shocked by their family’s current struggles with affordable and accessible housing that I wanted to shake the world and demand an explanation. I was naive to think that 25 years later their story would demonstrate how far we have come in the disability rights movement. Certainly in some respects we have come far, but their experience also speaks to how critical it is that advocacy and awareness continue. The laws that Jennifer and our other historic advocacy leaders have fought for must repeatedly be refreshed with new life and breath, and sometimes this means taking a public stand. Jennifer and Cyndi have found it’s about time for them to do it again.

Getting involved in the ADA movement We found out Jennifer had cerebral palsy when she was 2 years old and were told to put her in a home or put her up for adoption,” Cyndi told me. At the time they were living in Arizona, and because of the lack of services and support in their small town, the professionals at Shriner’s said, “We can’t cure her  and  it’s <caring for her at home> not worth it.” Cyndi recalled that day vividly, “Jennifer’s grandfather, who was with us at the time, said, ‘Oh, bullshit, we aren’t putting her in a home!’ After that day grandpa would put Jennifer on their family’s horse in her t-shirt and diaper for her daily therapy.” After Shriner’s diagnosed Jennifer with CP, Cyndi spoke with her cousin Tommy Olin (he refers to Jennifer as his niece) who had been working as a photographer for disability rights activist Diane Coleman. Tommy, who would become the visual historian of the disability rights movement (and is the current ADA Legacy Tour bus driver), connected the family to the efforts of ADAPT, the disability rights organization founded by Wade Blank a former orderly and assistant administrator at a Denver nursing home. ADAPT became one of the central forces of the disability rights movement. Jennifer joined them for her first protest in Phoenix, Arizona when she was just 6 years old. Jennifer said, “It was pretty cool. A bunch of people in wheelchairs (like herself) fighting for their rights.” It was the first time she said she saw people with disabilities empowering themselves. She wanted to be a part of it.

 

liftphotoTomOlin

Photo of Tom Olin’s original shared with photographer’s permission

It was during this time, 1988, that Jennifer first experienced discrimination. She went out to a restaurant with the members of ADAPT and they were refused service because, as the restaurant staff told them, “People don’t want to watch you all eat.” This sparked a passion in her and was the reason she personally got involved in the movement. “I wanted to be able to go into a restaurant and eat and/or go into a public place and eat.” Jennifer said she saw this as an opportunity not just for herself but for other kids.

When it came to participating in the Capitol Crawl, many of the adult advocates tried to discourage Jennifer’s participation and were concerned about having a child reinforce the image of people with disabilities as childlike. Jennifer said she had to do it and that she wanted to do it for herself, her friend who died a few months earlier, and for the future. She said she wanted to represent her generation. ADAPT founder Wade Blank encouraged Jennifer to follower her heart. At that point Cyndi said that Wade pulled Cyndi away to leave Jennifer to participate.

After the Capitol Crawl, Jennifer and Cyndi helped write the original ADA law, each contributing significantly to the final product. Cyndi wanted to ensure that daycare centers, even if they were not federally funded, could not discriminate against children with disabilities. She also wanted to protect the rights of parent caregivers and asked that they not be penalized or forced to put a family member into an institution to keep their job. Jennifer wanted to make sure she could ride the same bus as her younger sister. “I wanted to be on the bus, and the same bus as my little sister!”

busphotoolin

Photo of Tom Olin’s photo shared with his permission

Tomolin

Photo of photo shared with photographer Tom Olin’s permission

In October of 1990 Jennifer received The “Americans with Disabilities Act Award” for her outstanding contributions to the enactment of the world’s first comprehensive civil rights law for people with disabilities.

After the ADA The passage of the ADA has not solved all of Jennifer and Cyndi’s problems. According to Jennifer, “In some ways we have made a lot of progress but we have also have had a lot of setbacks, gone backwards a bit. People with disabilities do have a lot more physical access; it’s illegal to refuse service to someone because they are disabled.” She believes in some ways we’ve gonebackward as far as housing and maintaining physical access. I often see new construction missing access and not following ADA specifications.”

We have seen this too!

Over the last two years Jennifer and Cyndi have even experienced bouts of homelessness, periodically staying in hotels because of a shortage of accessible and affordable housing in the Denver/Boulder Colorado area where they have lived for 25 years. Many places that are identified as “accessible” still have barriers despite the existing laws. In fact, one apartment community told Jennifer that they would not rent to her if she could not get out of her chair and climb up the steps to the building! Ironically Wade Blank and ADAPT started their disability rights movement in Denver decades earlier and was the reason Jennifer and her mom came to live there. Jennifer and Cyndi are now living in a place offering federally subsidized housing, a place that, because of their federal subsidy, are supposed to be particularly in tune with the needs of people with disabilities and the laws that support them. Instead they have repeatedly had to fight there and in previous housing communities just to have simple accommodations which should have already been in place (i.e having grab bars installed in the bathroom).

Cyndi Keelan wonders if some of these issues have arisen due to the natural focus of investment groups who are often involved in purchasing low income housing for profit-making. At least at their current location Cyndi and Jennifer do not believe their property management group is focused on meeting their needs, even if those needs have been written into law. As Cyndi says, “It’s 25 years later and avoiding ADA law isn’t ignorance, it’s arrogance.” They also report being bullied by some of their current neighbors and the property manager for being disabled. As Cyndi says, “We are still climbing those steps.”—a reference to the Capital Crawl from 25 years earlier.

It was very hard for me to hear these details and believe this kind of discrimination continues. Jennifer and Cyndi have been speaking with local advocacy organizations and leaders and, after filing complaints with the Office of Civil Rights and the Department of Justice, Jennifer spoke out about housing issues at a local ADA event yesterday. Both mother and daughter believe, “We need to educate and reeducate key officials at HUD and Medicaid about fair housing laws, ADA, the Olmstead and Melville Acts.” These are the laws that were established to prevent the kinds of things from happening to Jennifer (and many others) that are still occurring today. And despite the laws that have been established to protect and uphold the rights of people with disabilities Jennifer wisely points out, “You have to demand your rights even if it’s written in law.” banners At this local event Jennifer was able to speak directly with the lieutenant governor of Colorado Joe Garcia and will be meeting again with him next week. While battling discrimination on the disability front, Jennifer continues to pursue an education. She is a senior at Arizona State University online and wants to be a pediatric occupational therapist. Her main goal is to finish her Bachelor’s degree and get in to Arizona school of health for occupational therapy. She wants to work with kids with disabilities, with a particular focus on bringing assistive technology into the classroom to support the kids who need it. Jennifer still sees struggles for kids with disabilities in the school system, particularly getting access to the technology they need to succeed. She worked independently to get her GED because her high school would only offer her a certificate of attendance after placing her in a special education classroom solely because of having an orthopedic handicap. But Jennifer’s capabilities far exceeded what her educators and the school system recognized. As a special education student Jennifer was only taught up to 4th grade level math but once she left high school she advanced to college level math in only one year!

Thank you Jennifer and Cyndi. Thank you for your courage, and determination. By joining the fight to formally secure and honor the rights of all people who have disabilities you and the many other fierce advocates of the disability civil rights movement have offered my daughter and many others the chance for a better life.

JenniferKeelan Cropped

Jennifer Keelan today with her service dog Maya

More on the history of the disability rights movement: “Lives Worth Living” A fantastic documentary film about the disability rights movement

More from Jennifer Keelan From “It’s Our Story” Project–A national initiative to make disability history public and accessible; “we’ve collected over 1,300 video interviews from disability leaders across the country since 2005. Now, we’re making this critical aspect of American history public, accessible and interactive”:

1.  “Climbing the Capitol Steps for ADA”

2. Talking about accidentally getting arrested at an ADA protest at age 7

Young girl with CP sits in her wheelchair, with a speech bubble that speaks to Individual Suppot Needs.

Leaving terms like “special needs” behind for more function/support focused language

Young girl with CP sits in her wheelchair, with a speech bubble that speaks to Individual Suppot Needs.

I have been thinking a lot about terminology used to describe Maya and other people who have “special needs”, “disabilities” etc. To clarify my intention these are words I use to signal a need for support that is not usually part of mainstream design, thinking and planning.

Although I try not to get too bogged down in someone’s language and remain committed to focusing on their intention, language plays an important role in shaping the way we think and approach people in society.  I realized a few months ago that I have become increasingly uncomfortable with the available terminology I can use to describe Maya.  I like options and I feel the language around disability has very limited options.

You may notice that in my writing I tend to rely mostly on the term “disability”.  I have settled for this term over “special needs” and many other proposed terms including “differently-abled”, when conveying that Maya has a functional need. I personally don’t care for the term “special needs” and feel it is disingenuous and forced.  I also don’t love the term “disability” because I feel it often brings about all kinds of unnecessary judgments about the individual. For better or worse the term disability has allowed me to communicate that Maya requires support to participate in society. I can usually count on the person I am addressing ultimately getting this message even if it’s a bit buried among biased images and stories about what disability means.

I know many of you dislike the term disability intensely while others see it as a statement of reality. I understand that it may lead some people toward a value judgment about the whole individual and his/her capabilities. However, I imagine those same people would likely have similar judgments regardless of terminology. One thing I think many of us may agree on is that over time the term “disability” has gathered historical baggage with very negative connotations. I have been wondering if moving away from this term, or at least having the choice to, would also lead to a shift in how we think about people with individual support needs so that the focus is on their inclusion.

In the spirit of trying to give society more options around language that conveys a need for support I am introducing the term:

Individual Support Needs or ISN 

To me this term plainly yet respectfully signals that Maya and other people require support that may not be typically offered through mainstream planning and design (I also toyed with the word requirement instead of need but it seems too long). It also has the benefit of familiarity with elements taken from both the term “IEP” (Individualized Education Program) and “special needs”. Most importantly, I feel it directs a conversation down a path of identifying which functional supports will allow an individual to be comfortably included in society. For example, if I were to tell an airline representative that my child has an individual support need or ISN, I would expect the response to be one focused on how that need can be met. Unlike disability, which has had many negative connotations throughout history, and special needs which to me sounds unappealingly cutesy, this proposed term is meant to be practical, honest, and mature.

What do you think? -Michele

 

CPRN Logo with a dark and light green ribbon next to the words Cerebral Palsy Research Network.

18 Products and One Adult with CP That Make Our Life Better

Over the last eight years, my husband and I have tried out countless adaptive and non-adaptive seats, chairs, blankets, silverware, cups, bikes, trikes, swings, wheelchairs, standers, walkers, etc., while trying to find what works best for Maya and for us as her caregivers. Since I know so many of you are pressed for time yet eager for information, I thought I would create a meaningful list for you, summarizing some of the key products and one person that has helped our family move closer to a place where life feels a little more graceful and enjoyable. Because the individual support needs of children and adults with CP are very diverse, your list may look different.  However, I believe many of the things on this list can help a lot of you and I hope you find some ideas here for making your life a little easier.

1. Rifton HTS Hygiene and Toileting System-Rifton really did their homework on this product. Much improved over the previous generation Rifton Blue Wave, the Rifton HTS offers phenomenal versatility and portability. It provides comfortable positioning for Maya and allows us to move her from the shower to the toilet without lifting her. This is a huge relief for our backs especially since we can move the toilet into her bedroom for nighttime potty breaks. There is also a travel pack available for when you are on the go. I haven’t tried it in a public bathroom (I imagine it may be difficult to set up quickly enough) but it’s been great to use at hotels. Maya and I are so grateful for this product.

riftonhts2

2. Yogibo-Maya is unable to sit independently and comfortably, especially while performing a task. Even the sofa poses some problems for her. After trying countless products and pillows, we came across the Yogibo. This bean-bag type pillow provides her great support whether lying down or sitting on the edge while watching TV. It can also be easily moved throughout the house. It has a washable cover (some outdoor covers are available) and comes in many sizes. Though it’s a bean-bag style, the material conforms better than typical bean-bag chairs better maintaining the shapes and positions you put them in.

yogiMaya

3. Miraflex and Flexon Glasses-Maya got her first pair of glasses when she was a year old. It’s tough for any kiddo to keep their glasses on and it’s even tougher when they repeatedly lose their balance or fall on their glasses. Miraflex glasses were comfortable, durable, and had a strap that allowed them to stay on. We have now transitioned to Flexon glasses which, although not as durable, are flexible and comfortable for Maya. And don’t forget the Stay Puts These little things are awesome! They keep her glasses where they need to be without requiring them to be extra tight on her face.

Miraflex

4. Apple ipad-Wow. The iPad has opened up so many possibilities for Maya. She is able to play her own music through iTunes and pretend play through virtual dollhouses and salons in ways that her fine motor and postural challenges have not allowed. The Ipad has also supported her inclusion academically by allowing her to type her work (she is unable to write) and do her reading with larger print and a lighted background. The Chester iPad case and wireless keyboard along with the tablet pillow (seen in the Yogibo photo above) have been welcome accessories.

5. Dyno all terrain folding wheelchair-Hello beach excursions!! We always loved the outdoors and enjoyed hiking and the beach. Maya has always loved these activities too but as she got bigger it became impossible to carry her and her wheelchair couldn’t navigate the terrain. From sand excursions to hiking trails, we were amazed by how many recreation opportunities opened up for us once we got the Dyno. Also, we are obsessed with lightweight products and, although this one is no umbrella stroller, it folds and at 25 lbs is easily carried by one person.

allterrain

6. Thomashilfen Recaro Monza Reha car seat with swivel base-After all of us were having back pain from car transfers I went hunting for a car seat with a swivel base. At the time, I found one on the mainstream market (there are at least two now-one by Orbit for toddlers and one by Combi called Zeus) but Maya was too big for it. After an extensive search, our equipment vendor located the Thomashilfen Monza Reha with swivel base. Because our backs couldn’t handle the side transitioning required to get her into her regular car seat, we decided we either needed to get this chair or buy a fully handicap converted vehicle. And when you are comparing the cost of this swivel seat to a converted vehicle, the price of the carseat doesn’t seem so bad. Although it has some quirks that I have communicated to the manufacturer (such as the seatbelt cover which is far too large and hard to manipulate and the tray which needs a cup holder and is impossible to clean), it has been great for Maya and for us. As an added “bonus” it has built in speakers.

swivelcarseat

7. Serta’s Adjustable Bed Base-Maya enthusiastically has renamed this her “Bower bed” after her buddy Bower (pictured below) who has one just like it. An adjustable bed is great for indigestion, reflux, colds, and positioning flexibility. And for the caregiver, this product is a huge back saver that does some of the lifting for you. We purchased this as an alternative to an expensive hospital style or more comprehensive special needs style bed.

bowerbed

newbed

8. Special Tomato Soft Touch Sitter-After Maya outgrew her toddler booster seat with harness we had limited options for her to be able to sit at our bar height kitchen counter. Lightweight, portable, easy to clean, and well-priced the Special Tomato Soft Touch Sitter has served us well.

Special Tomato Sitter

9. LEVO sit-to stand wheelchair-Inclusion and independence. These are two biggies that Maya has experienced more fully since she began using this chair. She can bring herself into standing and clap and dance with her peers. She can also wash her hands at the sink and recently made a cooking video while standing by her dad’s side at the counter.

*Please keep in mind that at the time this was written not all sizes of this chair had a transport option.

cookingdoc   levo

10. TFH Pull bar and an adaptive swing-Maya loves to swing and as she has gotten older she became eager to swing on her own. Since her legs don’t allow her to swing with gusto she asked for something that might help. The day we installed the TFH pull bar was one of the most exciting of Maya’s life, offering her new independence and freedom. It also has helped her improve her bimanual hand and arm strength which has translated to improving her daily life skills.

TFH

11. Caroline’s Cart-I wish this was around when Maya was younger but I am grateful we can use it now. When she was a toddler I asked our PT for ideas of how to take her shopping because she always tipping over in the grocery cart. The suggestion of flour and sugar bags didn’t work so well. I remember the day her legs got stuck as I was trying to get her out of the cart. It was horrible. She was crying and I was heartbroken. Thank you to Caroline’s mom Drew Ann who has passionately brought Caroline’s Cart to market. I am unsure of the starting age for Caroline’s Cart but you may wish to explore the Leachco Prop R Shopper and the Wrap Strap both designed for younger children. Also some mom’s and children really enjoy babywearing.

Caroline'scart

12. Zippysack/Halo SleepSacks-Maya is unable to cover herself back up at night. This means that whenever she is cold, we are called to come back in and cover her up. We have found a couple of things that have helped us solve this problem. She used the Halo Sleepsacks until she outgrew them around age 5. Recently we found the Zippysack and that has been another great solution! This means at least one less trip to Maya’s room in the middle of the night!

zippysac

13. Bruno Big Lifter car wheelchair lift-Why in the world did I wait so long for this? Having a lift in the back of the car has been fabulous! I always say how I can manage by myself, and “Oh, her wheelchair isn’t that heavy” etc. But now I don’t have to “manage” and we will soon (we have to bring the chair to the mobility dealer for bracket fitting) be able to transport her power chair without dismantling it and having two people load it into the car. I love that this lift takes up little room in the trunk so we still have all of our storage space when the wheelchair is not in the car.

biglifter

14. Adaptive Trike-I was just saying last week how I couldn’t believe our therapist was bold enough to have Maya try riding a trike a few years ago. She couldn’t sit up independently so I wondered what her therapist could have been thinking? She saw my face and said, “You never know.” I would have never believed it had I not been there but it turned out her therapist was right and Maya was on her way to exploring life from the seat of bike. Riding a bike is a right of passage and the day Maya took off on her bike was a beautiful experience for all of us. It also helped her developmentally by giving her new opportunities to use her body, coordinate movements, and enhance her visual processing skills. Check out the CP Daily Living website to learn about companies and resources for purchasing adaptive bikes and trikes.

mayabike

15. Kaye Bolster Chair-The first Kaye bolster chair we used was borrowed for several years from a local therapeutic pre-school. At the time it was the only chair Maya was able to comfortably sit in with stability and perform activities. It also has wheels so we can move her throughout the house. It’s well made, adjustable, and offers an alternative seat to using her wheelchair at home.

Lilly and Mimi at desk

16. Portable suitcase toilet-“Travel Potty”-This is for younger kiddos but, as Maya’s grandma reminded me, came in very handy when she was younger. Lightweight and portable, it is convenient to use in a stall where the toilets are too high, if your child struggles with balance, or for use in the back of a van. This was a product that got a lot of use from our family.

17. Custom changing blankets-Finding yourself in a restroom with a child or adult who has outgrown changing tables is very tough. I was grateful I found an e-bay seller in the UK willing to ship to the US who recognized this need and made us a large changing blanket that was easy to carry and clean. I haven’t come across a US-based seller. If you are in the UK here is another option offered by an Etsy seller. **Update a follower found a US based Etsy seller selling extra large changing mats as well.

18. **Coffee Maker**– Ha-ha! Maya’s dad offered this suggestion. I never drank coffee until Maya was born. She has always had insomnia and since we often still get up with her several times a night our coffee maker is our dear friend.

19. Maya’s adult mentor Dartania– Maya has an adult mentor “Dart” who also has CP. She has been in our life now for a couple of years and has become a member of the family. We have watched a beautiful friendship emerge between them. Maya consults with Dart on many topics and confides in her about her deepest and most frustrating emotions related to having CP. I have been brought to tears (sometimes laughing and sometimes crying) hearing Maya and Dart navigate these waters together. There has been so much stress relieved by Maya having Dart as a mentor. I think they both look forward to their time together. Dart has been available to support all of us by providing hope, insight and love to Maya and our entire family.

mayafacetime

 

The CP Daily Living equipment section has a list of resources and information about equipment exchanges, re-use programs, and charities offering funding for equipment purchases. Social media has brought the disability community much closer together. There are many opportunities to share resources and post ads for equipment you are seeking and recycling. We found Maya’s power chair sitting in a back hallway of our therapy center. It turned it needed a new home and was donated by a local family whose son had outgrown it. Although it was several years old and needed a new battery it works great! We have also benefitted from borrowing equipment from a local therapeutic pre-school and connecting with some talented carpenters. You also may wish to find out if you have a local wood-workers guild willing to donate their time and/or resources to your family. -Michele

The Complexity of Vision Problems in Children with Cerebral Palsy

This is the third post in a series of posts regarding vision and cerebral palsy. Here are links to parts one and two.

Until last year, when I saw Dr. Christine Roman-Lantzy speak on Cortical Visual Impairment (CVI) I knew very little about the complexities of vision and visual processing. After that lecture, I realized how much support Maya needed in this area and since then I have been working to learn how Maya sees and understands the world visually. In Maya and other children with CP who have had an EDBI (early developmental brain injury)**recently published in the medical journal DMCN, it’s important to consider not only how the eyes themselves are working but also how that incoming information is being processed by the brain.

According to Maya’s developmental optometrist, in all children vision goes through a process of development just like other parts of the body and brain. This development requires the child to have experiences moving in space, playing with toys/objects, and constantly getting visual/spatial feedback. These experiences build the foundation for vision and happen quite naturally for most children. However, when kids have movement limitations they have less opportunity for the brain to gather this critical information and make ongoing and unconscious calculations about where they are in space in relation to other objects. These movement limitations when combined with an injury to the visual processing centers of the brain create complex vision challenges that may not be readily apparent. Therefore, so these challenges are not overlooked, a child’s visual development needs to be seen as an integral part of the overall developmental picture. Every child with CP or an EDBI needs an evaluation of how the eyes themselves are working and how the visual processing centers of the brain are making sense of the incoming visual stimuli.

Vision

Maya’s overall development has been limited by her challenges with visual processing in ways that have been difficult to unmask. For example, originally I had thought Maya’s misidentifying people and her lack of interest in certain toys and shapes were an extension of her personality and sense of humor. Now I understand these behaviors were related to a more serious visual processing issue. I didn’t have much help from her doctor’s figuring this out. Only a few select physicians and professionals focus on teasing apart the complex components that create vision, evaluating not only how the eyes are working together and what they see, but also how the brain is processing the incoming visual information. Consider yourself lucky if you have a local specialist such as a neuro-ophthalmologist who can holistically evaluate eye health and how the child uses vision in daily life.

During her first year, Maya had a few of visits to a local ophthalmologist who evaluated her and helped address an obvious problem with one of her eyes turning in (called strabismus). After a prescription for eye-patching and glasses, and a couple of subsequent visits, we didn’t believe Maya had any vision issues left to address.

It wasn’t until she was three years old that we learned differently. While working with Maya, our experienced and intuitive OT sensed something was abnormal with her vision. She couldn’t put her finger on what precisely was happening and she suggested we visit a developmental optometrist. After our initial visit, Maya’s vision immediately improved with a prescription for bifocals and a subtle prism lens that shifted her visual field upward. Her movements were more organized and both her teachers and therapists reported that she was tuning in and focusing more during the school day. These changes in her lenses provided stability for a while but as Maya’s academic demands have increased, other visual and processing problems have become evident, making it more difficult to figure out how to help her overcome them.

This became particularly apparent over the last year as I had become stuck helping Maya progress with her reading skills. I couldn’t figure out what aspects of Maya’s vision were interfering with her ability to read: ocular impairments, visual processing, or a combination of both.  I knew Maya still had slight strabismus and difficulty visually tracking, but I wanted to know if there was something new I was missing or if her vision had changed and she required a different prescription for her glasses. We went back to her developmental optometrist for help. After a careful evaluation (almost three hours!), she told us that Maya’s prescription didn’t need to change. She explained that Maya tends to use one eye or the other but not both together, and she still has some strabismus. Her existing glasses are helping to mitigate these problems and encouraging her eyes to work together and with more ease. However, as her academic tasks are becoming more visually demanding and complex, she simply needs more time to develop new vision skills, a slow process for her. I compare this to Maya’s need for more time to coordinate and calculate other physical movements, and we are approaching helping her with her vision in the same way we have been helping her negotiate her physical limitations.

Similar to breaking down the components of gross and fine motor movements for other parts of her body, we now are learning how to break down the visual pieces for her until they makes sense. Doing so allows her brain to organize and process the world visually and build upon those skills further. Just like we have found alternative means of helping Maya navigate the world physically, we are knee deep in helping her forge her own path visually with the unique supports she needs to be successful.

One small example of how we do this is to help Maya recognize where she is working on a page. When she thinks about the work she is doing (decoding letters or calculating numbers) or becomes distracted, she is unable to come back to the place she left. Minimizing the visual traffic by covering up surrounding words, questions, and/or pictures, and highlighting the area where she left off, helps her more quickly and easily return to where she was working and allows her to use her energy to continue working ahead.

In summary, we have at least three different areas to address: the visual acuity of the eyes themselves, the physical movement of the eyes in aiming at and tracking subjects and the large issue of the reception and processing of the information received by the brain. It’s critical to address all three to understand problems affecting vision and perception in people with CP. There is no real roadmap or extensive body of research to guide us and her clinicians along this path, and many vision specialists and doctors disagree on what to focus on and what works. We are getting partial pieces of information and vision care from multiple types of vision specialists and I am combining whatever I can on my own to address Maya’s CVI issues. It has not been easy, and has required patience from all of us, especially Maya. In order to wade through the confusion, I have focused on what interventions and suggestions have helped Maya see better (based on what she reports) as well as read with more ease. What is encouraging is that she is improving as we learn how to help her visually organize images and letters.

I hope that more vision specialists and educators will begin to recognize the critical need for comprehensive vision assessments and support for kids with EDBI’s. It’s incredible how addressing the complexities and nuances of Maya’s visual impairments has made a tremendous difference in her academic progress and experience of daily life: playing games, seeing her first train and airplane moving in the distance, being able to tune into and recognize the sun rising, and now beginning to read. Parents cannot shoulder this responsibility on their own, nor can our children wait to have the proper support to access their world visually. The more we can foster the brain’s ability to organize and manage increasingly complex skills in all areas of development, including functional vision, the more quickly children will be able to seize opportunities for learning and habilitating from their initial brain injury. This will offer children like Maya a better quality of life and new opportunities for experiencing the world.

Resources:

You will find a list of resources for CVI and vision impairment in Parts 1 and 2, as well as definitions for a variety of terms used here.

NEW!! Vision and the Brain: Understanding Cerebral Visual Impairment in Children

To find a developmental optometrist in your area visit: www.covd.org **Please note that developmental optometrists often prescribe eye exercises and these visits are typically not covered by insurance. The following website offers some helpful definitions and comparisons of different types of vision specialists.

To learn more about CVI and the work of Dr. Roman-Lantzy visit: http://cviresources.com/page1/page1.html **Dr. Roman aims to educate as many professionals (and parents) as possible about CVI. She developed the CVI Range Assessment and Intervention Scale for evaluating and tracking individual visual processing skills. Her intention is to have these assessments and supports available to students through the school system and part of their IEP. The student would have their classroom learning designed around their vision needs where they would be free and a natural part of their day (as opposed to another therapy visit/s).

Perkins School for the Blind-An excellent online resource for professionals, families, and individuals to learn more about different types of vision impairments.

The laboratory for visual neuroplasticity-Harvard University, Schepens Eye Research Institute

North American Neuro-Ophthalmology Society

Please visit the CP Daily Website for additional updates on vision in cerebral palsy/EDBI

Early Developmental Brain Injury (EDBI) graphic; a central circle and arrows pointing to other circles with effects of EDBI.

Introducing the term “Early Developmental Brain Injury (EDBI)” and a new framework for discussing cerebral palsy

It’s been 10 years since professionals and scientists last revisited the use and relevance of the term “cerebral palsy.” During that time knowledge about brain function and neuroplasticity has increased exponentially. For that reason, it’s now time for a change that reflects a more modern understanding of this condition and conditions associated with having a brain injury or disturbance in brain development. I propose a new context for better organizing the boundaries of cerebral palsy. I am introducing the term “Early Developmental Brain Injury (or interference in development),” or EDBI, as the initial diagnostic category and conceptual framework through which cerebral palsy, one of the many possible consequences of such an injury or disturbance in neurological development, should be understood. This type of change would immediately provide parents, clinicians, researchers and insurers a more appropriate perspective from which to think about, research, diagnose and treat what is now called cerebral palsy. The current emphasis on the motoric aspects of an EDBI is a historic artifact from the 1800’s when children were grouped together because their motor dysfunctions were the most obvious symptom of a then less understood neurologic disturbance. Adhering to that framework in the modern age limits the vantage point from which the initial injury is viewed and separates the condition from the mainstream brain research where it belongs.

Since the 1950’s experts in the field have repeatedly come together to revisit the term cerebral palsy and debate whether the definition and name should be revised or replaced. The latest international consensus meeting on defining cerebral palsy was held in 2004 in Bethesda, Maryland. During that meeting, “Reservations were expressed about the exclusive focus on motor deficit, given that persons with neurodevelopmental disabilities may present with impairments of a wide range of functions that may or may not include severe motor manifestations, thereby calling for the need for an individualized multidimensional approach to each affected personal’s functional status and needs.” At the conclusion of the meeting the answer to this conflict was to maintain the term CP and expand its definition and boundaries. While the new definition is broad and comprehensive, it’s stuck with a confusing name that refers only to a subcategory of a brain injury. Plus, since the pipeline of information from these meetings is not well organized, only an elite few professionals are privy to hearing about changes boundaries in a timely manner.

Despite the consensus statement from the 2004 meeting, the disagreement and confusion about diagnosing cerebral palsy continues, filtering down to families and the public. The limitations of the term cerebral palsy and the “wait and see” approach to diagnosing the condition delay the identification and tracking of symptoms beyond motor deficits. While doctors and families are waiting to see if a young child is a candidate for a diagnosis of CP, the child may face a delay in treatment. Instead, by actively providing an immediate diagnosis or description that brings recognizable neurological events under a unified title such as EDBI, there is a better chance of identifying the need for immediate clinical interventions and supportive services.

When the developmental pediatrician gave us Maya’s diagnosis of cerebral palsy he tried to make me feel more at ease by making light of the term, cerebral palsy, saying it was “just a catch-all term.” But aside from the emotional weight of receiving this diagnosis, I needed an intellectual and practical planning framework that would help me understand her condition and what I was seeing happen in her body. This label should have helped organize her access to medical interventions and support. Rather than providing clarity for me, I felt more confused about what my daughter’s symptoms meant.

I developed CP Daily Living in part to try and address the confusion our family felt after our daughter received the diagnosis of cerebral palsy. As I began conducting research for the website I discovered a lack of centralized, accurate, and consistent educational information about the condition. I found other confused parents, caregivers, an antiquated public understanding of cerebral palsy, and many clinicians unclear about its diagnosis, categorization, and treatment. As a parent and advocate, my intention is to improve the general education and clinical management of cerebral palsy by tweaking the framework upon which we have hung it. The epigenesis and multi-causal pathways associated with its development are not for me to address; this issue remains separate from this proposal.

It turned out that the more I searched for answers the more confused I became. The piece of information that could have helped me better support, process, and track what happened to my daughter was to understand first that CP is a sub-category of a Perinatal or Postnatal EDBI. Furthermore, despite her receiving a diagnosis of cerebral palsy, it was not clear to me that she may be at risk for other conditions associated with her initial injury. I thought the diagnosis of cerebral palsy meant that doctors were limiting the scope of her injury to motor development. I was wrong. If doctors and professionals had used a broader term such as EDBI, I would have better understood they were leaving room for assessing and determining whether other associated conditions may impact her development, daily life, and ability to learn. I have continued to be surprised by the variety and complexity of conditions we have uncovered in our own daughter. The obvious connection between her brain injury and the possibility of any part of her brain being affected was not so obvious through the cerebral palsy diagnosis. At the very least it would have been helpful for someone to help our family understand the scope of what we may be facing so we could arm ourselves with timely and appropriate resources. Much of what we have uncovered ourselves about our daughter relates to her initial brain injury, not cerebral palsy.

Another reason I wish to highlight cerebral palsy’s relationship to a brain injury is to align it with current interests and support for brain research such as the US’s national BRAIN Initiative. Formally and clearly highlighting the connection between cerebral palsy and the brain also places it next to the related and robustly supported traumatic brain injury (TBI) community already in the foreground of the public’s attention. Including the word “brain” in conjunction with cerebral palsy will further make the condition immediately relatable to the public and with this improved clarity we may better our chances for increased attention and support. The new and well identified association, will lead professionals and laypersons alike to think beyond old definitions and images of CP. This shift in terminology and thinking may have a positive and lasting impact on the treatment of people with CP, and the understanding of the diverse and potentially complex challenges children, adults, and their families face in coping with the effects of an Early Developmental Brain Injury.

Here is an example of my proposed diagnostic and clinical management framework:

Patient X has a Post Natal Early Developmental Brain Injury or PNEDBI due to a Grade III intraventricular hemmorhage.

EDBI Associated Conditions for Patient X:

Cerebral Palsy-Mixed quadriplegic with dystonic posturing, GMFCS IV, GMFM66 score of 57.5.

Conditions secondary to CP for Patient X:

  1. Hip displasia
  2. Bladder and bowel control dysfunction
  3. Problems swallowing liquids
  4. Apraxia of speech
  5. Ocular impairment-strabismus

Conditions associated with having an EDBI and not involving muscle control for Patient X:

  1. Vestibular dysfunction
  2. Epilepsy
  3. Cortical Visual Impairment (CVI)-Phase II on the CVI Range
  4. Sensory Integration Disorder
  5. Sleep Disorder
  6. Central Precocious Puberty (CPP)

© Copyright 2014 Michele Shusterman, CP Daily Living

The following is a graphic providing a visual illustration of the relationship between EDBI and SOME of its associated conditions including cerebral palsy:

Early Developmental Brain Injury (EDBI)

 

Ideas for implementing the new framework:

Once a commitment is made to openly identify or align cerebral palsy with the term “brain injury or interference in brain development”, there needs to be a reliable, known, and respected pipeline of information for community updates that physicians and professionals know they can access for current information about people with EDBI, cerebral palsy, and its related conditions. I believe since the AACPDM has acted as an authority on matters related to defining CP and is presently working on identifying standards of care, they would be a natural host for electronically disseminating this information. Let’s create a place on AACPDM’s newly unveiled website where professionals may access pertinent information about community updates, standards of care (or lack of them), and guidance documents for diagnosing and assessing not just where children fall in the GMFCS and GMFM scales, but also scales that identify and track commonly seen associated disorders for children identified as having an EDBI.

Once professionals can at least agree upon this larger more general framework and context for relating to cerebral palsy, the information channeled to families may become clearer and more consistent. Eventually, I would like to see a diagnosis pamphlet for parents whose children have had an EDBI. It would discuss not only CP but other potential complications and symptoms associated with having an EDBI. The goal would be to spur families into taking immediate action regardless of what formal secondary diagnoses professionals ultimately agreed upon. I believe the EDBI framework and having an initial diagnosis in hand, will help families understand and begin to proactively organize their thoughts, feelings, and approach to helping their child. This approach is based on modern ideas about neuroscience and neuroplasticity, and the increasing evidence for improving outcomes with the earliest possible interventions.

Update! A version of this post has been published in the February 2015 issue of the medical journal Developmental Medicine and Child Neurology.

Things to know about including Maya in your classroom-Creating a Teacher’s Resource Guide

The following is a resource sheet, the Teacher’s Resource Guide (TRG) which I compiled for Maya’s new teachers to help them better understand her behavior, how she learns, and how to optimize her participation in the classroom. She attends a private school and Miss K. is her teaching assistant/aide. Her primary teacher has more detailed information about how to make specific adjustments in the classroom to support Maya’s learning.

What you choose to include in your TRG may differ depending on your child’s age, specific needs, whether he/she attends public or private school and their specific policies and procedures. Even if your child has an IEP (Individualized Education Program), it may be helpful to offer teachers some highlights and reminders about your child and written from his or her perspective. Perhaps you will even get some new ideas about what to include in your child’s next IEP.

_______________________________________________________________________________________

Things to know about including Maya S. in your classroom:

Maya1stday

Dear Mr. or Mrs XXXXX,

I have a condition called cerebral palsy. The areas of my brain involved with muscle control and coordination were injured when I was an infant. Cerebral palsy affects people differently. In my case, both of my arms, legs, and trunk, are difficult for me to control because my brain sends confusing messages to my muscles. Sometimes it sends messages to them to tighten or to loosen, but often not at the right times or to the right degree. In addition to difficulty with movement, I have some other conditions to consider which may require additional planning and/or support in the classroom. Please remember that having cerebral palsy does not define me, but it does require some additional thought and planning go into my day. Miss K., my teaching assistant/aide, is available to offer insight and assistance in the classroom whenever you or I may need it.

1. Slow down and wait for me!! Slowing down is one of the most helpful ways to help me remain included in class activities. Whether it’s a physical, academic, or social activity, slowing down gives me the chance to organize my thoughts and my body in order to stay a part of the group. Also, when you ask me a question please give me extra time to respond. I am very in tune with my surroundings and I listen carefully when people speak to me, but I often need extra time to respond.

2. I turn away in order to tune in. Very often you may see me look away from you when you are speaking. This doesn’t mean I am not paying attention, nor is it intended to be disrespectful. In fact, by turning my eyes away and turning my ear toward you, I am often trying to focus in on what I am hearing by limiting the visual information I need to process at the same time.

3. I cannot recognize faces. Although I may know you or my peers and have seen you many times, please tell me your name outside of the classroom. You can say something as simple as, “Hi Maya, it’s Mrs. Hart.” I have a condition known as cortical visual impairment or CVI. This means that the part of my brain that processes visual information needs some help breaking down and sorting through visual traffic. It also means that I often don’t recognize people’s faces and I often use context, hairstyle, jewelry, hair color, and voices in order to figure out who is speaking to me. I may get confused if your hair is different, or if someone has a similar style and color as your own. To read more about CVI visit the CP Daily Website: https://cprn.org/cortical-visual-impairment/

4. I have epilepsy. I take epilepsy medication outside of school in order to control seizures. I also carry emergency medication. Miss K. (my teaching assistant/aide) is responsible for tracking and administering this medication in case I have what is called a “break through” (breaking through the medication barrier) seizure. I don’t have seizures frequently, but if I do, have one someone will need to call 911 immediately. Miss K will attend to me and please have my friends leave the room if possible. I will often not be able to communicate until after the seizure stops and I will likely be groggy or sleeping afterward.  Mom has provided a handy list of do’s and don’ts if I have a seizure. Please familiarize yourself with this information.

5. I have a strong startle reflex triggered by fear of noises or in response to something I perceive as threatening. When this happens I often push back in my chair, blink my eyes quickly, and tighten my muscles. I also may drop whatever I am holding. On occasion it may cause me to cry. It’s no very different from your own behavior when you are startled, but my nervous system is more easily triggered to protect me.

6. Please talk to me AND Miss K. before approaching my body or trying to take me out of my wheelchair. It’s tempting to want to try and make adjustments to how I am sitting etc, and I know you are trying to be helpful, but this makes me uncomfortable and invades my personal space. It also may on occasion be unsafe since I have difficulty maintaining my balance. I may appear stable one moment but may unexpectedly lose my balance for no apparent reason. If it looks like I may need assistance, please speak with Miss K. and have her help me.

7. Sometimes I may more easily lose my temper or become upset when I don’t feel well. Having cerebral palsy and epilepsy causes me to feel some strange and uncomfortable sensations like headaches, dizziness, and other aches and pains throughout the day. It’s a part of my condition that I am learning to accept.I am working on focusing my mind on other projects and my schoolwork but sometimes I get overwhelmed with what I am feeling physically and this makes me more susceptible to losing my temper. It usually helps me calm down if you ask me what is bothering me and give me a few minutes to process and express my feelings.

8. I want to do what my peers are doing whenever possible. Miss K and Mom are available to help you with thinking through and approaching lesson planning so that I am thoughtfully included in class activities. I am a kid like any other and wish to participate and be involved with any activity they are doing. Give me a chance to do something on my own. If you are unsure what is a reasonable challenge for me ask Miss K. I will on occasion let you know that I don’t need help.

Sometimes including me in activities takes creativity, prior planning, and patience. Sometimes simple positioning adjustments, moving my chair to another part of the room, or slowing down the speed of an activity makes a huge difference in my ability to participate. Again, please feel welcome to talk to Miss K. and Mom and bring forward any questions you may have to help me participate more fully and comfortably at school.

9. Food-

I have a few dietary restrictions. If there is a special treat offered in class please check with Kelly about whether I may have it. Also, Mom is happy to provide a substitute as well.

Since I am often fighting to control my muscles, I may become hungry more frequently than my peers. Although I don’t wish to disrupt my teacher and classmates, on occasion I may need to briefly leave the classroom for a quick snack.

Please feel welcome to contact Mom to discuss any concerns or questions you may have. She also runs a website called CP Daily Living where she shares our experiences and provides educational information about cerebral palsy.

Sincerely,

Maya

Mom’s contact info: Michele S. cpdailyliving@gmail.com Website: www.cpdailyliving.com

What a parent of a special needs child wishes her friends knew:

Allisonfamily

 

This is a guest post contributed by parent Allison Combs. The Combs have been married for 10 years and have two children ages 8 & 6. Their son was born at 32 weeks and later was diagnosed with Cerebral Palsy.

1. We feel alone. Please don’t intentionally or unintentionally exclude us or our children from activities with your children. Your children may be the only children that they can learn to develop friendships with. If a social situation doesn’t seem appropriate for our child, leave it to us to decide whether to attend or not.

2. Please don’t feel uncomfortable around us or our family because you don’t understand. Half the time we don’t understand either, but we need the sense of normalness that your friendship provides.

3. Let your children ask questions. It’s totally ok with us and we love answering and educating your children that ours aren’t that different from yours.

4. Sometimes we feel like venting about things we know you don’t understand. And it’s ok if you don’t know what to say. Just being a friend with an ear is all we need at times.

5. Our parenting situation isn’t all that different from yours. It’s still parenting and it’s still kids, we just have some extra things attached to our lifestyle.

6. Even though our lives may seem impossible at times (trust me we feel that way too!) we wouldn’t change a thing. If anything our special child has taught us so much about life, happiness, really appreciating the small miracles of everyday things. It actually makes us feel pretty damn lucky that we get to really appreciate all this that you may take for granted.

7. We get jealous. Yes I’ll admit that when I see a 1 year say or do something my 6 year old can’t do or say it sucks! Oh but when my 6 year old still does the sweet wonderful things that a typical child has long ago stopped doing, such as cuddling, petting my hair and looking at me with the most adoring eyes, it makes me appreciate my life anew every single day.

8. We are tired. And if I may not join in the monthly girls nights out, or miss a few social happenings it doesn’t mean I’m being a bad friend. It just means I may need some down time, or we have so much going on with therapies doctors appointments etc. But please don’t give up on us. We still love you and still need your friendship.

9. We worry. We worry all the time. About doctors, school, the future. And it’s ok. We know our future is yet to reveal itself, it’s all wait and see. And we know you know that too, and it’s ok to talk about it.