Wednesday, August 12, 2015

Mama vs the Accent 1400


When we first brought Cary Lynn home to live with us she was little, observant, and non verbal.

At nine months old when babbling and words are starting to kick in my daughter remained silent.

That was our first meeting.  Mind you with a mouth full of binky it's hard to say anything.  And in the beginning that binky was a staple for every one's sanity!

But that didn't mean she didn't communicate.  My daughter knows how to get her point across.  The first week when we landed in the hospital the doctor came in and made the rounds.  He stood by my daughter's bed and compared her intelligence level to that of a slug.  Or something uncomplimentary.  Anyway, he then stuck his finger too close to her mouth to poke at her.  She bit him.  Hard.  Yup I thought, she's a keeper.  It was at that point that I really fell in love with my new daughter.

We dutifully did what all good parents did and signed up for speech with Early Intervention.  Her teacher came weekly and her goal was speech.  But still the words didn't come.  You see Cerebral Palsy robbed my daughter of so many things.  Looking at an MRI we saw that her language center is roached (not a medical term but you get the point).  Asking her to learn to speak is as pointless as asking me to learn Sanskrit.

But lack of speech does not mean lack of communication.  Those are two different things.  Even though the words didn't come the sounds did.  Clicks, raspberries, facical expression and various vocal tones erupted.  Even though words weren't there sounds were.  Soon it dawned on me that she had a lot to say.  So I started to listen.  Soon I found myself understanding Cary Lynn's primitive language.  I also got to be her interpreter.

But I wanted more for her.  I wanted HER to say words.  So by then we were outpatients at Children's Hospital.  They introduced me to the big mac switch.
Yay!  I felt like we were getting somewhere!!!  But the thrill didn't last.  You can record ONE phrase. That's it.  So Cary Lynn got bored.  I tried to convince her speech people that she could say more.  But they were stuck on "we only do it this way and kids like Cary Lynn just can't handle more than one phrase."  My daughter was being denied a voice.  I tried to make it work.  We had a huge meeting with the heads up.  They were only concerned with the attendance policy.  Not giving my child words.  In fact they really believed that kids weren't capable.  So I did something really sensible.  I left.  I figured no therapy was better than what she was getting.  We did finally find a good fit at a new center. 

I was discouraged.  I started to question whether Cary Lynn really was capable.  Then the stars lined up.  First I met another mom who was passionate about communication.  She made Cary Lynn a very special book. 
This is PODD.  This book with the switch opened a whole new world.  With a person scanning the words Cary Lynn had lots of options.  But I was greedy.  I wanted more for her.  I wanted her to have ALL the words.  

So I traveled to another children's hospital and had her evaluated.  After two hours they brought us back.  After another two hours we were told we get to trial an Accent 1400.  Cary Lynn rocked it in the eval but after I went home I started to get a little (OK a lot) anxiety ridden about it.  What if it didn't work?  What if it was too much?  What if she couldn't?  What if I didn't model it just right or just enough?  

Once again stuff fell into place.  We met with Kate Ahern.  If you don't know who this fantastic human is check her out here.  She met and spent quite a bit of time working with my daughter.  Because she believed in us and that we can make this happen I believed that I can do this and we can give my child a voice.  

Then the device came.  Our sales person conveniently went on vacation but luckily my friend came up and we got that bad boy in gear!

This is core scanner.  It doesn't look like much yet, but as time goes on more and more words will be added.  This is the start.  I was overwhelmed a bit (ok a lot but I managed to squelch it) and I hesitantly introduced Cary Lynn to Chip (yes I name everything).

Here's Chip your new personal communication assistant, said with a smile. The Cary Lynn proceeded to push Chip off her tray in an effort to kill him off quick.  And laughed.  Because you know destroying a $7000 device is all in a day's work.

NO NO NO YOU DON'T THROW CHIP!!!!  So Chip needed a second and so did I at that point.  I took a breath, turned him on and started playing with Marvin.  As I demonstrated Chip to Marvin I heard interested grunting coming from some little person.  I asked her if she wanted to try again.  A click meant yes.  So I handed over Chip.  Carefully.

Chip and Cary Lynn have started bonding.  She still likes to try to send him to his untimely demise but she is starting to understand that her words have power.
She has a switch, Chip reads the words and she picks.  Right now she prefers to wack Chip in the face with her hands. 
But I'm not picky.  I'll take what I can get.  She even asked to use Chip today!!!  So we are making progress. It takes time but I'm willing to invest the time.  I'm only hoping that the world sees what I can see.  A little girl who is smart, sassy and finding her voice.  


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Amy Fields is a wife, mother of two special needs children, three deranged cats and a opossum.  You can follow her adventures in her blog Many Kinds of Families.  

Tuesday, August 4, 2015

A Glimpse

I am a fast-moving kind of a gal.

I go, go, go.

I drive, drive, drive.

I move, move, move.

Always traveling at a steady pace.

Full speed ahead.

Occasionally, however, the Universe will place something in my path to block my forward motion.

I am frozen for a moment, unable to move, touched deeply by something profound,

something that moves me,

something outside of myself.

These moments are often caused by the strangest and simplest of things,

the lyrics to a song

or a license plate posted on the car in front of me.

Whatever the message or incident, it has a profound effect on me.

It awakens me from my blindness.

When you think about it, if I am always looking ahead,

then I am oblivious to what's behind me.

I miss the opportunity to value my important progress.

I lack the ability to reflect,

to think about where I have been.

To admire the progress I have made.

so that I may appreciate where I am headed.

Important life lessons reside in these rare and powerful moments.

They are glimpses, I believe, of something we need to acknowledge.

A message we need to hear.

To me, it's like a PowerPoint presentation sent directly from above.

An exclamation point,

an emphasis on something overlooked.

I would like to share one of these rare moments with you.

It is a glimpse that took my breath away.

On Friday, my beautiful niece sent me this.....

It is Nick singing

many years ago,

reminding me on this day,

to just sing, sing a song.

Nicholas Peters
Here Comes the Sun

  video
 
Sing, sing a song
Sing out loud
Sing out strong
Sing of good things not bad
Sing of happy, not sad
 
Sing, sing a song
Make it simple to last
Your whole life long
Don't worry that it's not
Good enough for anyone
Else to hear
Just sing, sing a song
 
Sing, sing a song
Let the whole world sing along
Sing of love there could be
Sing for you and for me
 
Sing, sing a song
Make it simple to last
Your whole life long
Don't worry that it's not
Good enough for anyone
Else to hear
Just sing, sing a song
 
-The Carpenters

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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com

Saturday, August 1, 2015

Help: My doctor said my child had a rare condition! Where do I find information?


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It’s hard enough on family caregivers when their child receives a new diagnosis.  The challenge is made even more difficult when the condition is rare.


What are rare disorders?

Rare disorders affect only a small number of individuals.  It may be daunting for family caregivers to try to find information that’s scarce.  There are many websites for health conditions, but not a lot that cover rare conditions. 





Where is reputable information available? 

Ø  If parents find out that their child has an unusual condition, there is good information available from the National Institutes of Health. 

Ø  The National Organization for Rare Disorders has a searchable database.   

Ø  For chromosomal disorders, there are descriptions of genetic testing and conditions available from Unique.
 
 


A Note on Genetics 

There are many good resources available and parents may feel relieved if the child’s symptoms finally “have a name.”  If it does turn out to be a genetic condition, other resources (besides Unique listed above) can be helpful:
 
·         Explaining the basics of what genetics means for families is Genes in Life.   
 
·         The Genetic Alliance has various resources, including “Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective.”  
 
·         There is even information regarding children with developmental or other disabilities who need organ transplants available from the Boggs Center.




 
 
 
 
 
 
 
 
A Final Word on Support
 
      Sometimes family caregivers need to talk to another parent “who has been there.”  Many of the disability specific organizations may have support groups or match parents.  An excellent resource that matches trained volunteer parents to families of children with the same or similar condition is Parent-to-Parent.
 
 






Family caregivers won’t feel so helpless or hopeless if they find out information on their child’s condition and learn how to handle it.  If parents know what to expect, they can take better care of their child, resulting in better health outcomes for their child. 
 
 
Resources:
  
Conditions 
 
National Institutes of Health-Rare Diseases
 
 
National Organization for Rare Disorders
 
Boggs Center-transplants and disability

Genetics

Unique-chromosomal disorders
 

Genes in Life
 
 
Genetic Alliance
 
 
 Support

Parent-to-Parent
  
 
 
Remain Hopeful,
  
Lauren  


     Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.

 
 
 
 
 
 
 


Sunday, July 12, 2015

The Umbrella Kid

Well they do say when it rains it pours.  In my house umbrellas aren't just for preventing rain from soaking you.  We live under the umbrella of diagnoses in our home.  It's part of the joys of living with a medically complex kiddo.

Cary Lynn is a medical enigma.  She delights in 3 am solos, her stuffed animals, and keeping doctors scratching their heads.

An umbrella diagnosis is where they take a whole bunch of problems, group them all together, and say voila!!  Here you go, take a whack a doodle at that!  I kid you not.  I sometimes think the way they come up with these things involve a dart board, stiff rounds of expensive scotch, and a parker brother's Ouija board.  They sit together, take some shots, consult the position of the stars, and make lots of notes in Latin so it looks like they know what they are talking about.  Then they have meetings, press conferences, and write it down in big medical journals.  Which are passed on to doctors and nurses who present the information to us while they try to look like they perfectly understand what is going on with my child.

Cary Lynn has many, many, many diagnoses.  I kid you not.  Last time her chart was updated she was up to 30.  Some are little and frankly not worth the space they take up on paper.  But some are bigger.

Three of her biggies are umbrella diagnoses.  Cerebral Palsy is considered an umbrella diagnosis.  CP is a large disability category.   For some people in the CP umbrella the only trace of it you see is they hold a pencil a little funny.  On the other end of the umbrella you have children like my daughter who cannot roll, sit, or do a lot independently.

The other one is CVI.  This one is also a big big umbrella.  From children who function so well visually that you would never know to children who are very visually impaired.  Cary Lynn falls right about in the middle of this one.

The last one is a new diagnosis that we just got official confirmation of last week.  Dysautonomia. It's a big word, but once again I'm stuck in umbrella land.  If you look up the definition you will even see in several places that it is defined as an umbrella term where the autonomic nervous system malfunctions.  It can range from mild issues like gi track problems to Parkinson's disease.  I sat down with neurology and had a very long and fun filled round of what type might Cary Lynn have. Because there is a really big difference.  There is the kind that you treat the symptoms and go on slogging or there is progressive.  In the case of the latter it's not a good prognosis.  At this point the medical community is still consulting the dartboard and the Ouija to figure out what category Cary Lynn is in.

I hate being grumpy and disgruntled.  But in a way I really am.  To me an umbrella diagnosis isn't a real diagnosis.  I am the type of person who really wants a clear cut answer.  So I know what to do to fix or at least stabilize the problem.  Instead I get a lot of running around the bush and unhelpful handouts.  And the run of the mill advice like, keep doing therapy.  To me that is the equivalent of patting a small child on the head and sending them off with a lolly pop in hopes that they have pacified the child and made them forget the problem at large.  So it makes me kind of mad that the same old tired things keep getting trotted out.

But the other part of me knows that they really don't know.  Cary Lynn lived.  She defied medical odds at 24 weeks.  She defied medical odds when she first came to live with us.  Every day she lives she defies another odd.  Everything that she does that they told me she would never do.  From the day she grabbed a toy to the day she took simple steps with support she continues to remind me that I dwell with a miracle.  The doctors are by and large clueless about my child and so many other children like her.

So while I'm not overly thrilled that I have to endure another umbrella diagnosis and I'm not going to give up hope that someday we may have better answers than darts and scotch can provide I'm going to take it one day at a time and watch my little odd buster continue to blaze new trails and set the world on fire.



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Amy Fields is a wife, mother of two special needs kids, and very late putting a post up!  You can follow her on her blog Many Kinds of Families

Wednesday, July 1, 2015

My Child Just Got Diagnosed-Now What?




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Part 1 of 2
 
Family caregivers need both information and support when their child is diagnosed with a new condition.  There are many reputable resources for parents of child with special needs. 
Good places to start (see Resources) 
 
v  There is an annual resource guide from Exceptional Parent magazine that lists all the national organizations for specific conditions. 
 
v   The Maternal & Child Health Bureau (MCHB) has “Knowledge Paths” on some conditions for more detailed information including research, databases, literature etc.   
 
v  The Parent Center Hub is the new home for information formerly from NICHCY (National Dissemination Center for Children with Disabilities.) 
 
v  The Statewide Parent Advocacy Network (SPAN) has a fact sheet on what to do while waiting for the school’s special education evaluation.
 
 
 
Other good resources on specific conditions           

Ø  Health A-Z – Health Central
            www.healthcentral.com 

Ø  Health Conditions - WebMD
            http://www.webmd.com/ 

Ø  Health Finder
            Spanish http://www.healthfinder.gov/espanol/  

Ø  American Academy of Pediatrics-information for families
                         http://www.healthychildren.org/English/health-issues/Pages/default.aspx

Ø  Health Topics  – Medline Plus

            Developmental Disabilities – Medline Plus            http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html 

            Disabilities - Medline Plus

For Kids Only 

Kids Health has information for families but also for children.  Using this type of information may make it easier for parents to explain the condition to their children.

 
Support for Family Caregivers 
Parent may also want to talk to another parent who has already gone through the same experience.  Trained volunteers are matched with family caregivers of children with the same condition through Parent-to-Parent.  The American Self-Help Clearinghouse also has a listing of support groups nationally. 

 
Family caregivers will feel more empowered once they know more about their child’s condition.   
 
NOTE:  Part 2 will cover rare conditions and where to find reliable information. 
 
Resources
Exceptional Parent magazine-annual resource guide
 
Knowledge Paths-MCHB resources for families
 
Parent Center Hub-specific disabilities
 
Statewide Parent Advocacy Network Fact Sheet
 
Kids Health
Parent-to-Parent
 
Support Groups
 
 
Remain Hopeful,
 
Lauren   
 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.