October 2017

Most of our kids require interventions of some kind or the other in order to make progress and function better due to Cerebral Palsy.  As parents, how do we know when they have received enough therapy?  Moreover, how do we know when it is necessary to do more therapy in order to achieve a desired result?

In the school environment, the goal of interventions is to provide the child with the ability to function well in that environment.  That is, the child should be able to communicate his/her needs, have enough mobility around the school setting to get to his/her classroom, write/read well enough to reach the curriculum requirements.  In most cases, school based guidelines fall short of providing the child enough physical, speech and occupational therapy for that child to function well outside of school - life’s requirements are slightly different than school requirements.  To that effect, many of us seek private (non-school based) interventions for our child.  

In most cases, we rely on professional opinions to know how much therapy is enough.  We ask for a therapy plan and we make sure that the plan is followed.  We also monitor progress and ensure that goals are being met.  Sometimes though, and even if the plan is being adhered to, the child stops making noticeable progress.  Why is that?  I learned from personal experience that there is such a thing as being “therapyed” out.  That is, the child stops being responsive to a specific therapy because they have reached their maximum capacity for that type of therapy at that particular time.  How do we know that the child has reached the point of being “therapyed” out? That’s where we need to depend on our gut instinct and some queues from our child. We might notice that the child seems less willing to go to therapy or is not quite so eager to spend time with the home-based therapist.  Other signs may be things like less progress is being made with that particular challenge i.e. the child was making significant progress with walking readiness and has now reached a saturation point and makes less significant progress.   This is not a permanent state of affairs.  It just means that it’s time for a break.  That particular therapy can be re-introduced at a later time.

As with any child - special needs or not - we should trust our gut instinct and take queues from our children to know when he/she has reached a point where something is not quite working for him/her anymore.  Good therapists know that this is a real phenomenon, and therefore, they should be willing to work with you on taking a break or re-focusing therapy in order to ride out this period.  Most importantly, allow your child to give you those queues without judgement. 

On another note, I received free passes for a disability expo taking place in Vienna, Virginia.  I have never been to any of this organization’s events, nor I am affiliated with the organization. I am simply passing this information on to you in case there is interest.  If you are interested, and could use a free pass, please write to me and I will send it to you.

September 2017

About Those Really Cool Parents…

Raising a chid with a disability presents a challenge to parents everyday.  Some days are good and some days are just exhausting both physically and mentally.  We, as parents, often make so many sacrifices in order to better our children’s lives.  If you don’t give yourself a pat on the back everyday, for everything that you do, please take a moment to do so - you deserve it!

Two families took parenting a child with a disability to an awesome level.  They built something around the needs of their child and in that way, they helped their children grow in ways that no school, or therapeutic session, nor strengthening activity can ever do.  

The first such family lives in our “back yard” in Fairfax, VA.  Their daughter is Cameron and I am writing about Cameron’s Chocolates.  My daughter and I went to Cameron’s Chocolates to see, first hand, how the shop operates.  It was a wonderful experience and Cameron is a lucky girl to have a shop that she can run as she grows into adult hood.  Learn more about the story behind the coffee house for yourself.  Cameron’s chocolates employs challenged people alongside able-bodied people to perform job functions such as making chocolates, coffee and serving.  Their chocolates are excellent!

The second family is located in Texas.  Gordon Hartman wanted to make sure that his daughter, Morgan, would be able to interact with other children without judgement - Morgan has autism.  Morgan also happens to love amusement and water parks.  You can read more about Morgan and the amusement/water park that was built to accommodate her and children like her.  A third of Morgan’s Wonderland’s staff is disabled.

I am always astounded by the level of generosity and dedication that people have when they are addressing the needs of special children.  Cameron’s Chocolates and Morgan’s Wonderland are both run by foundations whose mission it is to support special people to achieve beyond the expected.  

As parents, our mission is also to help our child achieve beyond his/her expectation.  In this capacity, we all have to help our children find a niche in adulthood.  It would be great if the niche they end up creating or finding is one in which they can thrive, be happy, feel useful as well as generate enough income to support themselves.   Though we may not all be able to open a coffee shop or an amusement park, we can still help our children define a passion that they can turn into a profession that falls within reach of their ability. 

 

July 2017

I am always on the lookout for resources on CP.  After all, I started this group because I thought there was a huge lack of “shared/shareable” information.  When my daughter’s pediatrician diagnosed her, it was as if I was slapped and my head started spinning - I am sure you all have a similar story!  As we go from doctor to therapist to schools, it seems that no one can provide the picture that we need at that moment…what will happen to my child? How will this affect me and my family?  How will I cope? How do I know I am seeking the best care for my child and doing all the right things?  And dozens of other questions.  Naturally, each diagnosis of CP is different than the other - that’s the nature of the condition - it affects each child in a different way.  BUT, boy would it be nice to have someone paint a picture - even if it’s not a clear one - of what we can expect?

Unfortunately, no one can paint that picture, but starting and continuing conversations with other parents has been the most helpful to me.  By sharing any information that we have, we are improving the lives of our special children and, as a result, our own.  So, pick up the phone, write an email, post on a forum - do anything that you think will give you the ability to share. Rest assured that you are not alone and that you are part of a larger community - one that is eager to know what you know.

In that light, I came across this resource.  I found a slew of helpful articles and learned many new things.   This site offers a directory of services, although I found little in Virginia - perhaps the directory is a work in progress?  Nonetheless, I think it’s worth checking back on.  I also found this blog article which I can almost recite in my head - it’s as if I wrote the article myself, because I have all the feelings that the author writes about - I trust you might too!!

Wherever your journey takes you this summer - I hope you are enjoying some much needed time off. Catch you in September 2017!

Mayya

 

June 2017

Yoga is a Hindu spiritual and ascetic discipline, a part of which, includes breath control, simple meditation, and the adoption of specific bodily postures.  Yoga is widely practiced for health and relaxation.  Who couldn’t use some of that - right?  It turns out that people with CP can benefit greatly form yoga in many ways.

Improved Respiration

Specific breathing strategies, as well as physical poses, open the diaphragm and the front of the body to allow for deeper, more rhythmic breathing. Those poses can counteract the closed and restricted posture that can occur from continual sitting (in a wheelchair), or from poor posture resulting from lack of core or trunk stability. 

Improved Motor Coordination

The practice of physical poses support children in developing fine and gross motor skills, balance, bilateral coordination, and improved muscle memory. 

Reduced Muscle Tone

Gentle stretching along with breathing and deep relaxation can help in reducing excessively high muscle tone and spasticity.

Increased Muscle Tone

Specific poses can be chosen to strengthen areas of the body that are low in muscle tone.

Focus and Concentration

Many yoga poses, breathing strategies, and visualization strategies support increased focus and concentration. 

Teaching yoga to children with CP requires knowledge, patience, a supportive approach, and understanding. Depending upon the nature of their unique challenges, children with CP will have varying needs, but even those with severe impairments can benefit from yoga.  Yoga poses can be modified to meet the physical needs of the child, based on their level of mobility and motor coordination.  Amazon has some cards that you can purchase to guide an in-home yoga practice for your child.  Here is the link to the amazon search.  I also searched YouTube for videos that have been posted on this topic.  You can go to YouTube and enter “yoga for kids with cerebral palsy”.  Some yoga studios offer specialized practice catering to kids with various disabilities.  Private sessions can also be arranged with your local yoga studio or you can find your own private practitioner by doing a Google search.

Namaste!

May 2017

I often find myself wondering what is the best way to interact with special people.  After all, I interact with those special people all the time - Am I doing a good job?  Though social etiquette is something I take for granted as I interact with other parents, colleagues, the teller at the bank or the clerk in the store, I pondered if I should treat someone with a disability the same way as I would someone who does not appear to have an obvious disability.  

I looked into this topic and, of course, the general rule of thumb is to treat someone with a disability the same as you would any other person.  People with a disability deserve and should expect the same level of courtesy and respect that we afford anyone else.  However, engaging with people who have a disability sometimes requires us to exercise even more tact and sensitivity.  Below are some guidelines that I found helpful.

  • When talking with someone who has a disability, speak directly to him or her whether or not you think they can comprehend your words.  Let the person guide your interaction as opposed to the other way around.
  • Offer your hand for a handshake.  People whose limbs may be shaky can still shake hands in some fashion or the other.
  • Kindly offer assistance when appropriate but wait until it is accepted.  Be receptive to instructions provided by the person.
  • Leaning or hanging onto someone’s wheelchair or walker can be perceived as encroaching on their space.  Instead, stand in front of the person and maintain good eye contact when you are speaking to them.
  • When interacting with someone who has difficulty speaking, be patient and wait for the person to finish. Avoid finishing the sentence for the person.  Try repeating what they told you to make sure you understood.  You can ask short questions that require a nod in response.  Most importantly though don’t pretend to understand when you haven’t.  Instead use the above strategies to gain a better understanding of what the person is trying to communicate.
  • Mostly though, relax!  People who have a disability want nothing more than to be like everyone else.  So treat them with the same courtesy as you would anyone else.

March 2017

My daughter loves to bake.  Mind you, I am an excellent cook but a baker, I am not!  So, when my daughter asks me if she can bake something, I often wince because I am of very little help to her.  At the same time, I recognize that she needs help managing kitchen gadgets. 

One Saturday afternoon, I had to be out of the house.  My daughter had planned to bake Rocky Road Brownies.  Since I couldn’t help with the baking process (I was not too saddened by my need to be out of the house!), I asked my mother to watch my daughter in my absence.  She and my daughter managed just fine.  In fact, my mother – with her many years of experience in raising children, shied away from helping my daughter as much as I would have had I been at home.   My mother wants my daughter to embrace her abilities.  When I returned home, I got two pieces of news.  When I asked my daughter how everything went, she reported that all went well but that Titi (her term of endearment for my mother), made her fend for herself.  “Doesn’t Titi know that I have CP?” she said to me.  I laughed whole heartedly at that facetious comment!  I then asked my mother how things went and she reported that all was well, and pointed out that while my daughter was fending for herself, she had researched cooking and cerebral palsy and found a myriad of tools and gadgets to help those that are less able.  Thus, this blog article!

 

After a couple of searches, I was astounded at what is available to tackle most every need for the person with cerebral palsy.  There are kitchen tools and gadgets as well as tools that aid with general functionality in and around the house.  Search for yourself by typing “cooking with cerebral palsy” in a google search bar.  One of my favorites is Adapted Kitchen.  This company didn’t have many kitchen gadgets but the ones they do have are amazingly useful.  I hope you will check them out.  Another great site is Maddak.  This company is a bit more commercial than the adapted kitchen site but they have many more products and some of those products go beyond the kitchen.  I can only imagine how liberating some of those tools can be for someone with limitations.

I am continually surprised by how well supported our special kids are and how empowering it is for them when they can do things independently by using those tools and gadgets as their aids.  So, enjoy baking Rocky Road Brownies or doing whatever else your child asks you to do with him/her!

Mayya

 

February 2017

When you have a child with special needs, you may find that one size does not fit all when it comes to schooling.  We happen to live in a state (Virginia) and a county (Fairfax) where the public schools are one of the highest rated in the country.  Having said that, the mission of any public school is to teach to the common denominator while attempting to cater to specialized needs whether those specialized needs are for lower performing, higher performing or special needs children.  Your child may not fit into the public-school pattern – your child may need something different than what the public schools provide.  There are options available in such situations and they have their pros and cons.

The first option is private schooling.  More than ever before, there are private schools that cater to various academic challenges.  There are schools that address the needs of a child with autism, ones for the gifted and talented and some for the rebellious child who can’t conform.  Below are some of the Pros and Cons to consider when placing a child with special needs in a private school setting.

Pros

  • Specialized schools can address specialized needs.  For example, if your child is autistic, placing him/her in a school that only addresses autistic children means that the staff are well-equipped to address those challenges.  Likewise, for gifted and talented children.
  • Private schools offer a flexible curriculum.  Because they are not state certified, they can create a curriculum that caters to their special population.
  • Private schools generally have smaller class sizes.  This can be a great benefit, especially since we have seen the sizes of public school classrooms growing recently.

Cons

  • You must pay private school tuition fees, and those can be hefty.
  • Private schools don’t have to cater to the needs of a special child (though they can – see pros above.)  You must find a school that caters to your child’s special needs rather than just a private school that caters to kids of all abilities.
  • Teachers are not necessarily certified since teacher certification is not a requirement for employment in a private school, and so, you may come across teachers that are less trained than their counterparts in the public school system.  It is a good idea to ask for the certification requirements/guidelines for each school.

Another option is home schooling your child.  Home schooling has taken off in the past 15 years and can be a great option for many families.  I found this site which contains useful information on home schooling in Virginia.  To home school your child, you must inform the State that you are doing so.  You can find the form on-line (do a Google search on home schooling in your district.)  Then, you must find/buy or design a curriculum that works for your child.  If you chose to buy a curriculum, there are many options.  One of my favorites is found here.  If you choose to design your own curriculum, you must present that curriculum to the State for approval before you are allowed to home school your child.

Pros

  • Flexible schedule.  Your child can learn at their own pace and yours.  Therapy appointments become easier to schedule.
  • Less busy work.  Our special children get brain fatigue more quickly because they are exerting so much effort to do what most take for granted.  By home schooling you are providing them with the ability to focus on what is academically necessary.
  • Well rested children.  By studying when they are most alert and completing their academic day in less time, special kids will be well rested and will be able to tackle other challenges with much more rigor.

Cons

  • Home schooling curriculums cost money or parent’s time.  The curriculum would either need to be purchased, for a hefty sum that repeats each year, or the parent will have to devote lots of time to designing a curriculum.
  • Reduced publicly funded services.  If you chose to home school, your child will fall under an Individualized Service Plan (ISP) and not an Individualized Education Plan (IEP.)  Each school district handles an ISP differently therefore you must find out what is covered and what is not prior to making the decision to home school.
  • Isolation.  Both the parent (who is home schooling) and the child will feel a certain amount of isolation.  Some of that isolation can be remedied by finding and engaging with other home schooling families.

Note: Many schools now offer a hybrid option where a child can receive instruction in the core subjects (history, science, math and English) at home while other classes like electives and languages can be taught at the district school.  The child will still be subject to reduced special education services though. 

Whatever you decide to do, you should research your options extensively to do what is best for your child.  I have found that when considering the needs of a special child, there are no easy answers, but trusting yourself in advocating and doing what is best for your child is always the right answer!

Update on August 14, 2017: Recently, a parent pointed out an article about school options.  The article was published in the June 2017 edition of Exceptional Parent Magazine and can be found here

 

January 2017

Since this group’s inception, I have received emails and questions from people all over the world.  Surprisingly, we started out as an in-person local support group for families in Northern Virginia.  But, with busy schedules, we have turned into more of a virtual support group – which is totally fine!  When I receive emails from people across the globe, I realize that all families with kids who have cerebral palsy share a common thread – that is: that they need to feel connected and supported.

I attempted to find statistics on the number of cerebral palsy cases worldwide but I could not get those figures to share with you.  However, the World Health Organization (WHO) posted the following key facts about disability in general:

  • Over a billion people, about 15% of the world's population, have some form of disability.
  • Between 110 million and 190 million adults have significant difficulties in functioning.
  • Rates of disability are increasing due to population ageing and increases in chronic health conditions, among other causes.
  • People with disabilities have less access to health care services and therefore experience unmet health care needs.

I was also able to get the following information, from the Centers for Disease Control and Prevention (CDC), on incidents of cerebral palsy in the U.S.:

  • It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy.
  • According to the CDC, each year about 10,000 babies born in the United States will develop cerebral palsy
  • 1,200 - 1,500 preschool age children are also recognized to have cerebral palsy each year.

Though not scientific by any means, I was curious to see if I could estimate the number of CP cases worldwide.  There are about 324 million people living in the United States and there are over 7 billion people living across the world.  Based on the CDC number above (10,000 cases each year), I extrapolated that there could be about 70,000 cases of CP, each year, worldwide.  That’s a staggering number.  Most cases of CP are mild and the child can conduct as “normal” a life as possible.  However, for many kids, CP presents some major challenges which in turn burdens the families supporting that child.  What I did learn from those emails that I received is that there are some innovative therapies and interventions being used in various countries.   The western world does not have a monopoly on what is best for the child with CP.  For example, I received an email about an intervention that has proved very effective for a child in Lebanon.  This therapy is called the Feldenkrais Method.  (Incidentally, as you may be aware, I post my blog on Facebook as well and that is how this particular family connected with me.)  If you know of a particular therapy or intervention that has proved especially helpful to you or to someone you know, please share it with the group by posting the information on my forum

I am hoping that providing this information to you will give you a sense of perspective as you go about your daily, though at times difficult life, while supporting your child. In the western world, I think that we are especially good at connecting with each other and sharing our stories without limits.  Generally speaking, in other parts of the world, the family with a disabled child tends to feel isolated.  So, when I get emails from people living in other parts of the world, I share with them what I know and I hope that they will share with me what they know as well.  Ultimately, we all want the same thing.  We want our special children to be the best that they can be – no matter where we live.  

December 2016

As parents of special needs children, we want them to achieve in life.  It is incumbent on us to help them to do whatever they feel they can do.  While they are still young, we largely define their goals for them.  The first task is to be successful in their education.  Thanks to the Individuals with Disabilities Education Act (IDEA), schools are mandated to help our kids achieve all that they can at school.  The vehicle to help our kids to be successful students is an Individualized Education Plan (IEP).  That’s the law. An IEP is an important legal document. It spells out a child’s learning needs, the services the school will provide and how progress will be measured.  Kids from age 3 through high school graduation or a maximum age of 22 (whichever comes first) may be eligible for an IEP. The IEP is meant to address each child’s unique learning issues and include specific educational goals. It is a legally binding document. The school must provide everything it promises in the IEP.

I have often heard that IEP meetings – which occur yearly, can be contentious.  But they don’t have to be.  It is important to be prepared for the IEP meeting by knowing what you think your child will need in terms of accommodations to help him/her succeed and achieve their maximum potential.  Children change so much during the course of a school year that it is often hard to predict their future needs.  It is helpful sometimes to have an IEP advocate.  An advocate can assist in the following areas:

  • Represents the best interests of the student in the educational process
  • Has a working-knowledge of State and Federal laws pertaining to children with special needs and can inform parent/guardians of their rights. If need arises, he/she will research a specific legal issue or case that is pertinent to a child’s education program
  • Suggests appropriate services, programs and accommodations/modifications to meet the student’s individual needs
  • Helps interpret the meaning of assessments and reports to parents, and explains their significance to the child’s educational needs
  • Prepares parents for the IEP/504 meeting. This could include interpreting and prioritizing support materials, proposing goals and objectives, and providing/rehearsing strategies for the meeting
  • Accompanies parents to IEP, 504, and any other relevant school meetings to provide advice and assistance
  • Empowers and educates families (parents and students!) to strengthen their own advocacy skills

In my many years of participating in my daughter’s IEP meetings, I did not find that I needed an IEP advocate.  My approach was always one of collaboration.  I see all the members of the IEP team (parents, teachers, specialists and administrators) as a team with special expertise.  My expertise is knowing my daughter better than anyone else does and my job at the IEP meeting is to help explain my daughter’s needs to the other experts on the team.  The other member’s expertise lies in knowing what my daughter needs to learn, how she will need to go about learning it and what resources will help her do so.  If we all come together with one goal in mind and mutual respect for our specific areas of expertise, then the process should be a pleasant one and everyone should walk out of the meeting feeling that they have done the best job possible.  Following up on the specifics in the IEP can also be challenging for all involved (child, parent and teacher.) But with grace and a common understanding, that can also be achieved without contention. 

 

If you find that you do need an IEP advocate, please research your options carefully and interview the people you find.  I suggest a referral by a friend as a good way to start the search.  The advocate is going to become part of the team and can in many ways set the tone for how the meeting will handled.  Here are some guidelines for choosing an advocate:

  • Select a trained, experienced advocate
  • Select an advocate with special education experience
  • Select an advocate who understands your child
  • Select an advocate who understands his or her professional limits 

Whichever way you decide to go – advocate or no advocate, here are three things to remember:

  • The IEP is the foundation of your child’s special education program
  • The IEP should not only focus on what your child needs in terms of assistance but also what their strengths are so that some of the assistance can be focused on what your child does best
  • You (as the parent) play a fundamental role in the IEP meeting because you bring valuable insight and concerns that only you can articulate on behalf of your child.

Wishing you and yours a restful break from school and a joyous holiday season.

 

Mayya

 

November 2016

As the Thanksgiving holiday is upon us, we all think about what we are grateful for.  I am so fortunate to have much to be grateful for…my children, my family, the ability to share a meal with them and enjoy their company. 

There are those that are less fortunate - and I don’t mean financially, I mean that they are not able to do the things that most of us can do.  Fortunately, there are so many organizations that help with so many different challenges.  I attended the Assistive Technology Conference at Rachel Carson Middle School on November 12 and learned about some of these organizations. 

First, did you know that George Mason University hosts the Helen A. Keller Institute for Human Disabilities? Moreover, this institute sponsors aim.va, a free program sponsored by the Virginia Department of Education.  They create free accessible instructional material for qualified students in Virginia to promote meaningful and equal access to the general curriculum.  A mouthful, I know.  So, what does that mean?  Say your child is unable to flip the pages of a book that he or she must read.  That book can be made available on line and it can be read out loud to your child.  From their website:

  • Learning Ally books are read by content matter specialists and are designed to be clear and understandable, with students who have disabilities in mind.
  • Speed controls allow students can speed up or slow down the rate at which the book is read.
  • Students can easily click to navigate by pages, chapters or sections as well as add their own digital bookmarks.
  • Can be read on Daisy players or PC, Mac, IOS, and Android devices using the free downloadable software or apps provided by Learning Ally.
  • Content is "Reflowable", meaning the text is optimized to fit the page regardless of font size.
  • For audio recordings in the “VOICEtext” format, the text will be highlighted as it is read which reinforces word recognition, improves fluency, builds vocabulary and develops decoding skills.

Helpful – yes? I also learned about another resource.  The Virginia Family Special Education Connection contains a host of useful information on education resources available to Virginia families.  From their website:

This website provides a one-stop-shop for parents, families and caregivers of children with special needs to:

  • Access local school system contacts and disability services in your community
  • Explore an abundance of resources to help your child succeed.
  • Learn about and plan your child's educational program
  • Understand your legal rights and responsibilities

I will be adding this site to my list of resources.  I wish somebody had told me about this website when I first found out that my daughter has CP.  It’s sort of a one-stop shop for a whole lot of information that I had to gather from various places, making it more difficult for me to wrap my head around what happens after my child was diagnosed. 

Lastly, I heard about a young lady in Fairfax County Public Schools who is an AT (Assistive Technology) Ambassador.  Read more about Hope here.  Apparently, Hope gave a highly inspirational speech at the Assistive Technology Conference.  I was hoping to share that speech with you but as of this writing, it has not been posted yet.  However, I was able to find this video that I think is super as well.  If your child is old enough to benefit from a few inspirational words, please share this video with them.  More about Hope later.

So much to be grateful for…there are tons of institutions and organizations whose mission is to help, guide and promote our special kids.  If you know of such a resource, please post it on my forum and share your information with other parents who could use the information to benefit their journey.

 

October 2016

CP Awareness Month - October


It is hard to believe that a year has passed since I wrote about CP awareness month which takes place every October.   I don’t typically put a lot of value on these “awareness” dates, but I must say that when it comes to CP, I have learned that the more awareness there is around this condition the better off our children are.
 
You see, when more and more people know and understand what CP is and how it affects our children then the more open those folks are to assist and accommodate our children’s special needs.
 
By far the most compelling way to raise awareness, is through popular culture.  I wrote a blog about movies to watch with our children a while back.  Recently though there has been an uptick of shows that depict people who have CP.  One such show was “Breaking Bad”.  Though not a show that I would recommend our children watch by any means, it does center around a family coping with life’s challenges in a very unconventional way.  The family includes a teenage boy who has CP.  The boy’s CP presents in gross motor and speech deficiencies.  The boy uses a walker to get around and has obvious articulation challenges.  He is not the focus of the show and plays a supporting role at best, but millions of people watched and enjoyed “Breaking Bad,” so you can imagine the heightened awareness this show brought to CP.  The boy is played by actorRJ Mitte.  In addition, RJ Mitte has become quite out spoken about the need for representation of disabled people in the film industry.  Read here.
 
I believe that largely due to RJ Mitte, a new show has hit the ABC line-up, “Speechless.”  Here is the information page about the show.  I watched one episode and didn’t enjoy it much, but I did enjoy seeing the interaction of the two parent characters with their son who has CP.  The boy is played by Micah Fowler who had this to say in April 2016 about his role: “I am honored to have the opportunity to play the role of a down-to-earth normal teen living with the challenges of cerebral palsy… I hope as people watch “Speechless,” they get to know JJ as a very normal person, to the point that the don’t even see the disability. I specifically hope to bring a huge amount of public awareness to cerebral palsy and most importantly, my hope is that the show will make people less uncomfortable around people with disabilities and more encouraged to interact with them, to look beyond the physical or other limitation and see the real person, the heart, the personality, the love and yes, even the humor.” Micah Fowler does indeed have CP – it is refreshing that Hollywood is starting to use real actors for the roles where a disability is highlighted.  Here isinformation about Micah Fowler.
 
So, awareness galore in October of 2016 as the world says “Yes, they can!” Special kids can live normal lives and hold jobs in the entertainment industry as they never have before.  And by doing so, they are setting an example of not only what a person with CP can do but more importantly, those actors, are making CP real and not a condition that our kids have to deal with silently. 
 
Mayya Saab
 
P.S. For those of you living in Fairfax County, FCPS is hosting an Assistive Technology Conference on November 12.  Read more here.  See you there!
 
 

September 2016

On Tributes

Since my daughter was born, I have had the privilege of staying at home with her.  I don’t mean that I wasn’t working – I had a full time job that I performed from home.  This afforded me the opportunity to take my daughter wherever she needed to go, whenever she needed to go anywhere.    I dropped her off at school and picked her up and I could go to therapy appointments in the middle of the day if needed.  I could be there if she was sick and I could volunteer in her classrooms when required.  I even attended field trips with her.

About a month ago, I accepted a position where I am unable to work from home.  My whole life changed, and so did hers.  We are adjusting nicely.  In fact, I think our new reality is forcing my daughter to be more independent and more self-assured.

Which brings me to the point of this blog.  I have a newfound respect for all you working mothers who still go to doctors’ appointments, therapy sessions and all the other myriad of interventions that your special child may need.  You have, as I found out, put yourselves aside in so many ways.  You work to provide a better way of life for your children and often you do it because you need to provide for health insurance options.  Reporting to work and then to your “primary jobs” at home means that you are exhausted at the end of the day and have no energy to think about what you need.  So, it’s not Mother’s Day today but I am dedicating this blog to all the working mothers who take care of our special children – you are an inspiration!

There is a group of mothers of special children who also happen to be teachers - I have such a deep rooted respect for them.  Those teachers are coming to school to teach our special children and going home to take care of their own – truly selfless.  Since school started about three weeks ago, it’s been a whirlwind of activity.  At back to school night, I met all my daughter’s teachers.  My daughter is in team taught classes so that she can get the extra help that she needs at school.  Generally, in team taught classrooms there are many children who have special needs that are unique to them.  Imagine teaching all these special children while accommodating all their various needs – I don’t really know how this is possible and yet those talented teachers do it every day!  So, if you find that your child’s teacher has forgotten about an accommodation that your child needs, take a deep breath, think about her for a moment and then write a nice email to remind her.  And in that email, remember to thank her for all that she does not only for your child, but for all children, including hers.

With a grateful heart,

Mayya

 

July 2016

Summer is always a favorite time for families to take a break from the hustle and bustle of life. Schools are out and work schedules tend to be lighter.  I am always awed by how many places and things one can do on vacation that can be educational as well as recreational.  Traveling with a child who has a disability can be challenging.  BUT, those challenges can be eased if you prepare in advance.

I mostly travel by car because I enjoy the freedom that this affords me.  I can take my time, stop where I like, eat wherever I like and get to my destination on my schedule as opposed to a pre-set schedule.  However, I have travelled with my daughter on planes, trains andboats.  And with some pre-planning, we were accommodated and I was able to take her everywhere we wanted to go.  My daughter is mobile but can't stand in lines for too long and cannot be rushed when getting from one place to the other.  Moreover, she needs to be guarded when utilizing stairs and escalators.

The American with Disabilities Act mandates that businesses that are accessible to the public must provide accommodations for people with disabilities.  An example of such a public place is a museum.  Most everywhere you go these days, you find a museum of some kind or the other.  Of course, Washington DC (we are so fortunate to live here!), has a myriad of them.  If you are taking your disabled child to a museum you will find that you can generally get around and partake in most of the exhibits without hindrance.  Isn't that wonderful?  I heard that many other countries are less accommodating!!

For travel by plane, train and boat, I suggest that you alert the carrier to your child's special needs well in advance.  In most cases, the carrier will allow you to pre-board with your child, provide you with accessible seating and assist in any way they can.  Last year, I had to travel to Orlando on business and had to take my daughter with me.  When I made my reservation, there weren't that many seats left on the plane and my daughter and I had to be separated.  I called the airline and explained our situation.  I was immediately upgraded to the next level in seating and given two seats side by side.  I was asked how else the airline can assist me in making my trip easier.  Also, last year, I travelled to New York City by train.  We were less accommodated on that trip.  However, when I called to complain, the ADA representative informed me that I had to call three days in advance of my trip and spell out the specific accommodations that my daughter required.  I was informedthat my daughter's needs would be met as much possible.  Though not the best answer, I still find that workable. 

If your vacation journey includes an amusement, I think you will find that your child will be well accommodated.  My daughter wanted to go white water rafting recently.  She did not require special accommodations for that trip but I noticed that one of the gentlemen in our group was disabled and needed a walker to get around.  The white water rafting company helped the gentleman get on the bus, assisted with his walker, helped him dis-mount and provided him with his walker.  Staff carried him into and out of the boat and he got to enjoy an activity that he probably never imagined he would get to enjoy.  In talking with him about his experience, I found out that he had requested assistance when he made his reservation.  It's as simple as that!

So, if you are reading this post from the comfort of your home while wishing you could take your child on an adventure, but fear that the adventure would not be a pleasant experience - don't.  Plan your trip and ask for assistance every step of the way.  More than likely, you will get all the help that your child needs and your trip will make a beautiful memory that your child will cherish for a long time. 

Mayya

P.S. I implemented forums on the website!  If you have something to share with the group, please go here and get started on sharing.

June 2016

CP News For You!

So, you are at the pediatrician's office for your child's well check.  Most pediatricians will ask routine questions such as: when did you child first roll-over, when did he/she sit-up, stand-up, walk and so on.  Depending on your answer, your pediatrician may ascertain that your child is developmentally delayed.  What does that mean?  By definition, developmentally delayed means: the condition of a child being less developed mentally or physically than is normal for its age.  Well that could mean a whole lot of things….including that your child may be content and isn't really in a hurry to take charge of their body yet.  However, it could also mean that your child is unable to take charge of their body. 

If your story is anything like mine, the labeling of your child as developmentally delayed is just the beginning of the use of all kinds of terms and labels to describe your child that are foreign to you and may at times be just overwhelming!  However, it has been proven that if a child is indeed developmentally delayed, early interventions are critical and can make a HUGE impact on a more successful outcome for your child in the long term.  So, by definition, developmentally delayed is still a broad description of a condition and must be narrowed down further.  The term interventions is also broad and will need to be defined.  Typically, medical interventions are actions taken to improve a situation.  So as an example, physical therapy is an intervention that will aid with walking.

The first step in getting a handle on those definitions is by reaching out to experts.  The Individuals with Disabilities Education ACT or IDEA sets out to ensure that children with disabilities are serviced through public schools to address their educational needs.  Here is some more information about that.

In Fairfax County, Virginia, there is an intake department for that purpose.  If you suspect your child has a developmental delay , or your child has been diagnosed with a developmental delay, please call Child Find.  Likely, you will need to complete a questionnaire and then an early childhood professional will get in touch with you to determine the next steps which may include some interventions.  Other local school systems have similar departments.  Do a search engine search for"children with disabilities in <the name of your local school district> " e.g. Children with disabilities in Arlington County Public Schools.

Now back to those definitions…you will hear a lot of terms that you are not familiar with.  I found it most helpful to type the questionable word in a search engine search bar.  I learned a lot!  Talking to other families with similar stories is also quite helpful. 

If I can be of help to you, please write to me.

Mayya

 

May 2016

 

CP News For You!

Did you ever stop to think about all the things that you do every day?  Walk, talk, run, type, eat and so on.  Able-bodied people take these types of things for granted.  For someone with CP, these tasks can be quite daunting and may require extra effort.  It is even sometimes necessary for someone else to assist with those tasks. 

So, riding a bike would seem like something that someone with CP would not be able to do.  However, you would be surprised at what is possible!   I found some information on adapting bicycles to fit individual needs.  As an example, there are hand-cycles for those people whose legs are not strong enough to peddle a bicycle.  A bicycle can be adapted to meet a host of other configurations. Having a custom made bicycle can be costly though.  There are grants to support this effort as well as people trading their used but no longer needed adapted bicycles.  Check out this page to learn more. 

For children who are ambulatory, I came across a great program to teach children how to manage a bicycle despite their disability.  The I Can Shine program started in 2007 and has helped over 20,000 people with a disability to ride a bike successfully.  This program is not for profit and relies on a vast volunteer network to accomplish their mission.  The I Can Shine program is available, locally, through Fairfax County Public Schools.   Click on the Find a Program button on the website to find locations that work for you.   I have personal experience with this program when my daughter decided that she wants to learn to ride a bicycle.   After signing her up, she attended a week-long after school class (75 minutes each day) and worked with the trained volunteers to learn how to ride.  What I found even more fascinating than my own child learning to ride a bike is that the program uses the talents of middle school children to serve as the child's "personal coach".  So, these middle school children are exposed to and learn how to interact with children who have special needs.  Middle schoolers tend to be self-centered and so participation in a program like this can assist with the acceptance of our special kids at school - a much desired and needed approach.  

Bike riding is one of those things that special children view as something that is "normal" and what children all over the world do - so why not give them the gift of being able to be like everyone else? 

Ride On,

Mayya

April 2016 Newsletter

Wouldn't it be wonderful if our children were born with an instruction manual? They are not, and nor are we!

We all constantly work on identifying who we are and we sometimes get to old age before we actually figure this out.  The point is that identity identification begins at birth and it is an evolving process - a process that becomes easier as the child grows.  More likely the identity discovery process becomes intense during the adolescent years as children continue the process of separation from their parents.

What shapes our identity is a host of things and they include, to name a few: self-image, talents, strengths, weaknesses, and passions.  So characteristics like being loving, truthful, honest, peaceful, kind, encouraging, hardworking, tenacious, fair, generous, helpful, grateful, patient, humble, courageous, and compassionate are just some of the things that help a child define themselves and it is our job as parents to help children figure out what all of those things are and what they mean to them. 

Now, if you add a disability to that mix - you can see how a child's self-identity can be slightly more complicated.  Their disability can set them apart from the rest - children don't want to be set-apart - they want to be like everyone else.  However, the disability, and thus being different, can be viewed as a negative but can also be turned into a positive and the child can then learn to embrace their difference and thus their uniqueness. 

I came across such a story recently.  Trace Wilson is a student at George Mason University.  He was born missing a hand.  It took a long time for Trace to come to terms with this loss but he has embraced his uniqueness, made it part of his identity, and is now telling his story.  You can learn more about Trace here

My daughter has also recently decided to use her disability and make it part of her identity.  She started her own YouTube Channel to talk about how Cerebral Palsy has affected her.  In her videos, my daughter talks about how to cope and achieve many things that she likes despite having CP.  You can view her You-posts here.

Parents, teachers, therapists and care-givers play a HUGE role in helping children with CP develop their identity.  Viewing their disability as just one part of their identity helps the child come to terms with their "loss" and helps to shape them into the fine, contributing human beings that they can be.  So, go ahead, point out how truthful, honest, peaceful, kind, encouraging, hardworking, tenacious, fair, generous, helpful, grateful, patient, humble your child is and then remind them that their disability has contributed to all of those traits.  

March 2016 Newsletter

CP News For You!

Raising a child with CP can be exhausting and expensive.  Often we feel that we are alone and not well supported.  This month's newsletter focuses on three items that may help with alleviating that feeling the you are alone. 

While many of us hold down jobs so that we can afford all the equipment our children need to thrive, we would rather be home with them or meet them at home after the bus drops them off.  Some relief is offered by a group that one of our members brought to my attention.  Equipment Connections is an organization that helps families with therapeutic equipment needed for a child with CP (and other disabilities) Their website describes the organization as follows: Equipment Connections is a 501(c)3 not-for-profit organization whose mission is to serve children with a disability in the greater Washington Metropolitan area by connecting costly adaptive equipment from children with disabilities who outgrow the equipment to other children who need it. We accomplish this mission through soliciting adaptive equipment donations and matching them to the families with a child with a disability in need of equipment. Our vision is for a world in which all available adaptive equipment is in use by the children with disabilities who need it.

The long and short is that they accept donations of items no longer needed by families and they accept applications for items that are needed by families.  They are located in Montgomery County, MD.  Families can go pick up items after their application has been accepted.

And while we are at work and then coming home to be more than full-time parents to our special children, we sometimes need a break.  I found Jill's House to help with providing respite to exhausted parents.  From The Jill's House website: We authentically love all children that come to Jill’s House and their families. They inspire others. Their stories impact our lives in the most positive ways, and we strive to impact theirs by providing a safe, fun place full of adventure and activities made just for them.  Jill’s House is designed around the children, we adjust to them, not them to us. The activities are carefully and strategically planned to meet the child where they are, with the purpose of bringing normalcy to childhood. We provide cozy and comfortable sleeping areas for safe and secure overnight stays, with constant and watchful care.

For families that need a much deserved break from caring for their special child, Jill's house offers just that.  You can drop off your child for some engaging activities in a safe and nurturing environment and take some time off for yourself to do whatever you need to do to catch your breath!  Jill's House accepts families regardless of religion, race or ethnicity.

Finally, I want to remind you that Fairfax County Public Schools holding its annual Special Education Conference.  I reviewed the agenda and it looks like it may address many of the concerns that we share as parents of kids with CP.  I encourage you to attend some of the sessions.    Conferences and sessions like these make us feel connected and supported and I find that to be VERY important.

Mayya Saab

February 2016 Newsletter

CP News For You!

In the Fall of 2014, my daughter, a 4th grader at the time, began to need more information about her condition.  You see, up until that point, when I discussed my daughter's condition with her, I used phrases like "you need physical therapy because you don't balance well" or "you go see the speech therapist because the muscles in your mouth are a little weak".  As with all discussions with children, one should start with little information and add as the age and maturity goes up.  Those descriptions that I used with my daughter to discuss her condition sufficed until the Fall of 2014 - at that point though - I felt that she needed to know specifically what her condition meant to her. 

My first step in addressing her increasing questions was to seek help from the school psychologist.  Through my daughter's teacher, I scheduled a meeting with the school psychologist to find out if it was the right time for me to name the condition and to discuss more details with my daughter and how much details I should discuss.  The conversation I had with the school psychologist proved invaluable to me.  I now had a plan and the plan included:

  1. Having a discussion with my daughter
  2. Going to the library to get material to support her exploration of her own condition
  3. Engaging with a psychotherapist to help my daughter address her condition in a positive way
  4. And finally, as per the psychologist's suggestion, having my daughter participate in a support group for girls who also have CP and whose condition presents itself in a similar fashion. 

The last item on the list above has been most helpful to my daughter - and by the way - contributed to the birth of this group!

The school psychologist found 3 girls in our area who shared my daughters' symptoms and presentation of CP.  We met once a month at one of our houses and the girls got to see how CP affects each of them, what support they needed, and how they feel about this support.  Most importantly though, it gave them a chance to be friends who shared a common thread.   After all, we all seek friends who are "like us" - so the ensuing friendship seemed like a natural occurrence for my daughter.  Though the group itself doesn't meet as regularly as it used to, my daughter has remained good friends with one of the girls.  In fact, I often hear; "I should talk to Jane (name changed to protect privacy) about this or that because she would understand what I am talking about."

I encourage you all to find children of the same gender and age as your child and start the process of having them meet and spend time together.  To facilitate this, you can reach out to the school psychologist or to the physical therapist at your school.  They both work with your child as well as many other children in their school and can help you put together a small group like this. 

If you are reading this newsletter, more likely you know that we tried to meet monthly but due to commitments and schedules, we have stopped meeting.  However, one of this group's members, Cindy,  would like to re-energize that process and has created a meetup group.  Cindy is very eager to meet other parents and have her son meet other children who have a common awareness.  Here is the link to her meet-up group.

If I can help any of you in this regard, please reach out to me

Happy connecting!

Mayya Saab

January 2016 Newsletter

CP News For You!


Last summer, my daughter and I drove to Columbus, Ohio to visit a cousin of mine.  Yes, we drove!  It took all day but we drove through parts of this country that I had never seen – and we caught some spectacular views.  Mountains, rivers and picturesque towns – it was really an adventure, and we enjoyed the road trip. 
 
My cousin is a horse enthusiast.  So, when Dina and I spent time with him, he naturally took us to visit his “home-away from home” and his BBF, Rohan, a race horse .   Rohan is HUGE and my what legs he has!  Rohan is also fairly young and bucked when my cousin rode him as he is still in training.  When my cousin asked if Dina would like to ride Rohan, I was leery – I couldn’t imagine my daughter riding this HUGE but beautiful horse, especially if he was going to buck and throw her off.  BUT the most miraculous thing happened!  When my daughter got on top of Rohan, his head went down and he became the most submissive horse I have ever seen.  He strutted around slowly and calmly as if he knew that Dina needed a gentle ride – it was AMAZING.
 
This whole episode got me thinking about horseback riding as therapy for children with CP.  Upon doing some research, I found out that indeed hippotherpay is an effective therapy for children with CP. 
 
I found this information on My Child at Cerebral Palsy.org:  Hippotherapy can help children with cerebral palsy on several fronts. Interacting with the horse can lift a child’s spirits emotionally and psychologically while also providing valuable physical exercise as the child learns how to ride the horse properly. A horse’s gait has three-dimensional movement—equine movement–similar to a human that helps a child plan physical responses to the horse’s movement. Horseback riding requires subtle adjustments and positioning to maintain proper balance and posture. 
Physical benefits can include:

  • Improved gross motor skills
  • Trunk core strength
  • Control of extremities
  • Improved postural symmetry
  • Reduced abnormal muscle tone
  • Respiratory control

Cognitive benefits can include:

  • Improved attention
  • Visual coordination
  • Sensory input
  • Tactile response
  • Improved timing and grading of responses
  • Improved ability to express thoughts, needs

Psychological benefits can include:

  • Enjoyable interactions with the animal
  • Opportunities for social interaction
  • Improved self-esteem

More information can be found by doing a goggle search on “horseback riding and CP”.  Horseback riding is not a cheap activity but I did find a class that seems well priced and yes, it can be found in our backyard at Frying Pan Park.  Here is a link to the page so you can check out all sorts of information on the Park, and the classes offered.   Of course, you should check with your child’s physician on whether this type of therapy is recommended for your child.
 
Happy Riding!
 
Mayya

December 2015 Newsletter

CP News For You!


Wishing you a season of cheer and good times spent with your family.
 
I recently received an email from one of our members and she mentioned that she would like the group to consider getting together along with our children.  She suggested a trip to Clemyjontri Park.  If you haven’t been there yet – you should definitely go with the group or just with your family.  The weather has been delightful and if it continues to be as pleasant, I would be happy to organize such a get-together.  Please write to me and let me know your thoughts on this.
 
A couple of newsletters ago, I mentioned that you should get to know your child’s school based team.  They are a wonderful resource to you – full of insightful and useful information.  There is another resource available to you through the school system.  In Fairfax County, that resource is the FCPS Parent Resource Center.  You should check out their website to learn about what they have to offer you – the parent with a special needs child.  On their site, you can access tutor lists and information on resources available to you at the County level.  Lastly, they have a physical library that specializes in information on special needs.  To learn more about the mission statement of the PRC, click here.  I also recommend a visit to the center where you can seek out and find all sorts of material that is not readily available on-line.  The resource center holds informative sessions as well as hosting an annual special education conference.   As a group, we can work with the parent resource center to request sessions and speakers on the topic of CP or any other topic that is of interest.  I would be delighted to work on that assuming there is interest from the group.  Again, please write to me and let me know your thoughts on this.
 
Other school systems also have Parent Resource Centers.  Here are the links for the Parent Resource Centers in Loudoun County and Arlington County.
 
Hoping to hear from you and wishing you a healthy New Year,
 
Mayya Saab