June 2018

When my daughter was diagnosed with Cerebral Palsy in the spring of 2006, we lived in a three-level town house.  As you would expect, the town house had three flights of stairs.  Each stair (and there were many!) was deep and tall which made going up and down the stairs particularly challenging for my little girl. To help her cope on the way up, I taught my daughter to hold on to the rail and climb up one step at a time and when her two feet were on the same step, she would then attempt to climb the next step and so on.  For the way down, I taught my daughter to slide down the stairs, on her tummy, while lying face down.  I figured that these two methods where the safest for her.  

Soon thereafter though, my husband and I started talking about moving to a more suitable or accommodating home.  I thought the best style of home was a rambler or ranch house where all the living and sleeping space are on one level.  Those kinds of homes tend to be older and hard to come by.  We started our search in 2009 and did not find our new home until 2012! The end result though is a house that is much more accommodating to my daughter’s special needs and one that we all love living in.

It may not be possible for every family with a special needs child to buy a more accommodating house. In those situations, it may be possible to modify the house to suit the special needs of the child instead.  Refer to this article for ideas on home accommodations that may include:

  • Install an exterior ramp to the front door
  • Convert a less used space on the main level to a bedroom 
  • Convert a hall bath into a full bath
  • Install a stair lift
  • Install grab rails in bathrooms
  • Convert cabinets to include pull-out shelving
  • Convert door knobs to handles

One family had this approach to their home modifications. The family decided that their son “needs his space and the ability to negotiate it on his own terms.” Isn’t that wonderful?

If you are considering modifying your home, it would be best to consult with an architect who specializes in this field – there are some!  The State of Virginia regulates and licenses all architects and contractors, so it would be a good idea to check-out the credentials of the architect or the architectural firm you decide to hire. You can check their licensing information here. I also found a wonderful resource on home modifications for people with disabilities from Fairfax County.  The site offers grant information as well which can prove to be very helpful should the modifications be extensive. 

Whether you decide to move to a new home or modify your existing one, you probably didn’t think about naming your home, but this 6-year-old decided to call her new house a “sponge house” – you can read more about that here.  So, what will your sponge house look like?

sponge house image.jpg

 

 

 

May 2018

Recently, a mom reached out to me asking about 504 plansand self-advocacy. Her daughter was struggling with when to ask for accommodations and when to be “like everybody else.” It’s a tough call for growing kids – they want to be like everyone else even if that means that sometimes they suffer silently. Here is a great article on this topic.  From that article, I found this definition: “Self-advocacy is a skill that allows kids to understand their strengths and weaknesses, know what they need to succeed and communicate that to other people.”

No doubt, when your child was a toddler you heard the infamous word “mine.”  What you probably thought is that the kid is not willing to share! But did you perhaps think that this is the first step in your child’s journey towards self-advocacy?

When do we parents of special children start to teach them about self-advocacy?  My answer is not soon enough.  Special children more than others, need to be able to assertively and comfortably ask for what they need.  And that can start as early as when they start to talk or gesture. Our kids will have to rely on the self-advocacy skills they learn early on for the rest of their lives.  

Here are a just few examples of when a special child will need to self-advocate in the classroom setting:

  • preferential seating
  • extended time on tests and assignments
  • reduced homework or classwork
  • verbal, visual, or technology aids
  • modified textbooks or audio-video materials
  • adjusted class schedules and/or grading
  • verbal testing
  • excused lateness, absence, or missed classwork

Sometimes kids need help figuring all that out, and in those situations the process starts with us – their parents. There are many things that we can do to assist them in their journey towards developing strong self-advocacy skills.  Here are some ideas:

  • Remind your child that asking for help is a good thing
  • Let your child have a say in educational decisions
  • Encourage your child to attend his or her IEP meetings
  • Consider putting in self-advocacy goals in the IEP

Despite our best efforts, sometimes our children need professional help in developing their self-advocacy skills. Don’t take this personally – the home environment is where kids feel protected and don’t want to do the things they must do in the real world.  If your child needs some nudging to find their voice, here are a few resources to help with the process:

  • School Case Manager. He or she sees a different version of our children.  The case manager can often assist with IEP goals to increase self-advocacy
  • Therapist. A therapist has experience with how to boost self-esteem and self-confidence which ultimately lead to good self-advocacy skills

So, when your toddler says “mine,” embrace them and encourage their journey towards self-advocacy!

April 2018

In the fall of 2017, I received an email from the Reston Community Center about their upcoming performances.  I noticed right away that they scheduled a performance by Maysoon Zayed in March of 2018. I got tickets almost immediately. Thrilled with my purchase, I told my daughter as soon as she got home from school.  My daughter immediately asked, “who is she?”

Likely, you haven’t heard of her either, so here is a link to her website.  She is a comedian with Cerebral Palsy.  Maysoon gave a TED Talk in 2013 – here is a link to that talk which I hope you will enjoy. Her show is not suitable for young children though I did take my daughter who is 15. I felt that my daughter could handle a few bad words and adult content. The show took place on March 31, 2018.

Maysoon started her show by telling the audience who she is.  Her opening line is “I got 99 problems…palsy is just one.” Her talks cover a slew of issues ranging from politics and women’s issues to living with a disability. She is opinionated, poignant and sometimes lewd, but she gets her points across with humor and who can resist that?  Soon after using her opening line, Maysoon asks the audience if there are any other “CPers”.  I thought it was a nice touch to acknowledge members of the audience people living with CP. She closed the show with an open question and answer segment where she encouraged the audience to ask her anything. Though a risqué move – opening herself up to ANY questions – this part of the show was truly great because a young woman, with CP, stood up, held the microphone and despite speech articulation issues, asked Maysoon a question.  

My daughter did not get many of the jokes from the show – but here is what she did get.  She saw a person, with Cerebral Palsy, up on stage talking openly about her disability.  She heard Maysoon’s frustrations and challenges and her comical way of dealing with them.  She saw a person who choose to be in the limelight despite her condition.  

We met Maysoon after the show.  She was welcoming and encouraged my daughter to talk about her condition openly and to not let her CP define her.  A truly amazing evening!

maysoon.png

March 2018

It seems there is a “month” for everything these days.  Some of these commemorations are silly like National Healthy Homes Month or National Honey Month.  There are also some pretty important monthly commemorations.  From Wikipedia, here are some of the monthly observances for the month of March:

National Nutrition Month, Red Cross Month, Social Worker's Month, Women's History Month and Colorectal Cancer Awareness Month and Umbrella Month, Peanut Month, Noodle Month, Mirth Month, Spring Month, Hoops Madness, Poetry Month, Umbrella Month, Red Cross Month, Youth Art Month, Academy Awards Month, Ethics Awareness Month, Help Someone See Month, Social Worker's Month, Women's History Month, National Nutrition Month, Honor Society Awareness Month, Humorists Are Artists Month, International Listening Awareness Month, International Mirth Month, Irish-American Heritage Month, Music in Our Schools Month, National Collision Awareness Month, National Craft Month, National Kite Month, National Nutrition Month, Optimism Month, Play the Recorder Month, Poison Prevention Awareness Month

March also happens to be Cerebral Palsy Awareness Month.  Sadly, many of the sites that list these types of observances, don’t mention that.  In looking into Cerebral Palsy Awareness Month, I found out that most every disability or cause is associated with a color such as heart disease is red, breast cancer is pink, childhood cancer is yellow.  Did you know that the color associated with CP Awareness Month is green?  The color green is often associated with new growth and renewal of life.  The color doesn’t seem to match the cause but one article that I found had a good explanation for it.  Here is the link to that article.

Who better then to bring awareness about Cerebral Palsy but the people who are affected by it?  That’s you, me, our partners, our children, grandmas and grandpas.  The best advocates though are our special children themselves.  Their stories can be instrumental in showing  others the effects of CP and how people live with CP.

A few years ago, my determined daughter decided to join Girl Scouts because she wanted “to be like everyone else”.  The Troop she joined was very welcoming and the Troop leaders went out of their way to accommodate her.  She, however, still felt that the other girls looked at her funny – and I think she was right.  She was different, but because her CP is mild, the girls couldn’t quite figure out what was different.  I suggested that she put together a little presentation on CP to tell the Girl Scouts in her Troop the following:

  • How CP affects her
  • How CP doesn’t affect her – her intellect is just fine!
  • Tell them what they can do to support her

At the end of the presentation, there were 10 girls and 2 moms who knew more about CP than they ever did! If possible, allow your child to tell his/her story.  Their story will not only help to foster understanding, it will greatly help your child feel that they are in charge of THEIR own CP story.  That’s awareness!

 

 

February 2017

A while back, someone asked me “what do you think your daughter would have you do differently in relation to her condition?” That’s an easy answer, I replied.  She would have wanted me to tell her that she has CP earlier than I did.  Looking back on the day when I told her, my daughter was relieved in some ways - she now has a “word” for her condition. She was also angry and said things like; “make it go away” and “I don’t want to have CP”.

I sought the assistance of a mental health therapist in order to help my daughter come to terms with her condition.  I “lucked out” by finding a therapist who tells it like it is and is supportive at the same time.  My daughter and I have both benefitted greatly from our interaction with her therapist and we continue to do so.  How does one find a mental health therapist based on a little more than luck?  Here are some pointers.

Ask you trusted circle of support

  • Look at Psychology Today
  • Ask the customer service department of your health plan for a list of in-network providers
  • Ask your school phycologists for referral

How do you know the therapist is a good one? Again, here are some pointers.

  • Is the therapist licensed?
  • What is their approach to treatment? Do they rely on research?
  • Are they willing to provide a treatment plan?

And lastly, here are some red flags that should concern you.

  • If the therapist’s approach sounds too good to be true, then it probably is
  • They promise the world
  • They don’t rely on research

Ultimately, seeking therapy for your child is a personal decision that only you can make – like I always say – trust your gut and take cues from your child. 

January 2017

I started this group because I wanted to meet people, like me, who were struggling to feel connected to someone “in the know”.  When you find out that your child has Cerebral Palsy, you need to hear from other folks who share the feelings that you have.  Doctors and therapists don’t cut it – that’s not to say they are not supportive, simply that they can’t possibly relate to how you feel.

We all live busy lives and juggle many things – including caring for our child with CP.  So, meeting on a regular basis is practically impossible, BUT, when we are able to connect – I can’t tell you how energizing the meeting can be! Recently, I met with a family and we found out that we have so much in common.  We share feelings, thoughts, apprehensions, fears and hopes, dreams and aspirations for our children.

I still believe in that face-to-face meetings are beneficial and almost necessary, but I have adjusted to the reality that it’s not as feasible as I would like it to be.  So, I created this Facebook group in order that information can flow more easily among group members.  If you have not joined yet, please take a minute to do so.  Here is the link.

There are other CP related groups on Facebook.  Below are links to two of them.  No matter how you do it – get the support you need and don’t feel alone.  However, be mindful of a couple of things as you seek support online:

  • Be wise when posting information about your child
  • Watch out for attempts to exploit the vulnerable
  • Use caution when using chat with other members
  • Do not respond to any requests to assist other financially, no matter how heart moving that request may be

https://www.facebook.com/groups/mildcerebralpalsyparentsupportgroup/

https://www.facebook.com/pg/CerebralPS/about/?ref=page_internal

Mayya

 

 

 

December 2017

Kids are amazing creatures.  They test their (and our own) limits every day. They are supposed to do that - that’s part of figuring out who they are.  Kids with Cerebral Palsy have to figure out who they are despite their disabilities.  But, what if we, as their parents, taught them right from the start not to say the words “CAN’T”?  

While you think on that, check this out.

 

 

Happy Holidays to you and yours.

Mayya

 

November 2017

I recently read an article about a girl, Ehlena,  and her therapy dog, Wonder.  The girl has Cerebral Palsy and has a service dog to help her become more independent at school and life.  Her service dog was specifically trained to help Ehlena move from walker to toilet.  Wonder is supposed to go everywhere with Ehlena, however, Ehlena’s school barred Wonder from going to school with her claiming that an aid could help Ehlena instead.  The ACLU sued the school on behalf of Ehlena and after many years, won the case.  You can read more about this story here.

My daughter does not have a service dog, but I imagine that if she did, the dog would become an integral part of her life and the two would be inseparable.  This got me thinking about the potential role that service dogs play in the lives of people who have Cerebral Palsy.  After doing some research on-line and making some phone calls, I found a few snippets about the role that service dogs play, how they are trained and how to apply to get a service dog. 

For people with Cerebral Palsy, a service dog primarily fulfills the job of assisting with balance, however, the service dog may have other functions depending on the need.   The dog may help with opening doors or retrieving items.  For balance assistance, the dog can be used to help with transfers (from walkers to toilets, from wheelchair to chair etc.)  The dog can also assist with helping someone get up after they have fallen and is trained to assume a certain position in order to get the person up off the ground.

Assistance Dogs International (ADI) is a coalition of not-for-profit assistance dog organizations.  Assistance dog organizations that pass ADI’s comprehensive accreditation become ADI member programs, and are regularly assessed to ensure they meet the high standards expected.

The purpose of ADI is to:

  • improve the training, placement, and utilization of assistance dogs
  • improve staff and volunteer education
  • educate the public about assistance dogs
  • advocate for the legal rights of people with disabilities to be partnered with assistance dogs

Good service dogs are expensive to train and the way that they are trained is quite important.  Karen Pryor is a leading trainer who uses the positive reinforcement method to train dogs.  Upon completion of her training program, trainers get a certificate that shows their commitment to training dogs using the positive reinforcement method.

In Virginia, there are only two ADI certified centers and they are: 

To get a service dog, there is an application process and a period of time where the dog is trained according to the needs of the recipient. 

Disabled people, regardless of their disability, who have a service dog say that their lives are greatly enhanced due to the special bond they form with their service dog.  I think that people who train service dogs have a calling - their jobs make the lives of people with disabilities better everyday - something to be thankful for this season!

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