Thursday, September 18, 2014

Support

I love/hate the question: How do you do it?

I hate it because the answer is, I don't have any choice, "doing it" must be done.

I love it because it means I must be fooling at least one person.

The real answer to the question is, I have a lot of support. I have the best friends in the world and plenty of them. That is something for which I am deeply grateful and simply could not do without.

I met with a friend recently that was visiting from out-of-town. When she moved from Portland she left her support system, and has a hard time re-creating it. One cannot easily "create" a support system, it takes time and to a large degree, is organic. However, if you are starting at zero, then your task is to find just one other person with a child with special needs. The needs don't need to be the same, the gender, age, none of that really matters. You just need one buddy that lives on the same planet you do, when it feels like you are an alien on your own.

When feeling alienated, I would also recommend a total eschewing of Facebook, and the like. Facebook is a lie. Don't get me wrong, I like to pop over there myself from time-to-time, but not when I'm feeling down. I know people that have had terrible vacations, and the one moment everyone was smiling and happy, that was the moment that went on Facebook. I've known people that have travelled for very unpleasant reasons, yet the picture on Facebook is of the ocean, lapping the sand, and the message is, "Taking a walk with my sweetheart." When you feel like everyone has a better/easier/happier/less-stressful life than you, Facebook is not your friend.

And a friend is just what you need.

If you're looking for an existing support group, start by asking your child's special ed. teacher, if there is one. If there isn't, consider starting one. The "rules" are simple:

1) Speak freely, knowing everything will be held in strictest confidence.

2) Come to the support group meetings even when, and perhaps especially, you are no longer in crisis. A group is not successful when everyone is in crisis all at the same time. You need people at all stages of the grief/healing process.

3) Meet at such a time and such a place, that your kids are not around - many churches have meeting spaces that are free to use.

4) Have someone keep notes and collect the resources that are shared. We now have a very detailed resource guide, everything from cranial sacral therapists to psychiatrists, occupational therapists to acupuncturists, vision therapists to marriage counselors.

5) Be OK with wherever you are. "There's no where you need to be with this pose," my yoga teacher says, and I love it. There are no "shoulds." Accept where you and your child(ren) are and move from there. Any movement is progress.

6) Ignore all advice from those that don't walk the path. Smile, be kind, but seek your counsel elsewhere.

7) Believe in the power of being heard. You don't need to fix the problem for anyone, you need to witness it, be present to it, allowing each person to have their story.

8) Laugh. Laugh when it's funny. Laugh when it's not funny. Laugh whenever and wherever you can.


You are not alone. You really aren't. Now, get out there and find someone to remind you of that every day.



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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.



Thursday, September 11, 2014

Uniquely Marvin

Now that our AC has been restored and normalcy has returned to the land I've turned my attention to reading.  And more reading.  A 14 page report has come home and once again tipped my world in a new direction.

A few posts back I talked about how hard it was to not have any sort of diagnosis for my son.  How I felt like I walked in the dark.  14 pages changed all that.  A switch has been flipped on and there's no going back.  We received our neuropsych report and educational testing.  We learned so much from it.
The first thing we learned is sort of what I refer to as the "duh" diagnosis.  You know the one you know your kid has and it's so painfully obvious that even the most dense person sees it.  I'm talking about ADHD.

If you know my son you know that he has the attention span of a fruit fly at school and in many other diverse situations (my apologies if I offended fruit fly fans).  I first worried about it in preschool.  It was so obvious to me.  His inability to focus on group time, busy areas, etc.  When I brought it up time and time again the concern was brushed aside by teachers.  I was told "he doesn't have it, see look at that kid, they obviously have it Marvin is fine.".  I hate being told my son was fine when he obviously wasn't.  In fact I have come to hate the words fine and Marvin in the same sentence.  When I talked with the Drs and told them that he was "fine" and his teachers didn't think he had it they were a little burned about it.  While I agree that ADHD is way over diagnosed I also know that Marvin's brain suffered from drugs in utero and severe trauma.  He DOES HAVE ADHD.  In fact it is a significant amount of it.  Significant enough that he will require medication.

Marvin has also been diagnosed with dysgraphia.  Dysgraphia is a specific learning disability that affects how easily children acquire written language and how well they use written language to express their thoughts. Dysgraphia is a Greek word. The base word graph refers both to the hand’s function in writing and to the letters formed by the hand. The prefix dys indicates that there is impairment. Graph refers to producing letter forms by hand. The suffix ia refers to having a condition. Thus, dysgraphia is the condition of impaired letter writing by hand, that is, disabled handwriting and sometimes spelling. Impaired handwriting can interfere with learning to spell words in writing. 

This gets more fun now.  Due to Shaken Baby Syndrome and abuses committed by bio mom he has right brain hemisphere dysfunction.  Can you say that five times fast?  This has given my son problems with visual spatial processing which may cause future math issues.  He also has significant difficulty with visual learning skills.  The impact of his abuse lives on and on.  Sigh.  

Plus we still have PTSD and attachment issues.  Can't forget to bring those to the party.  

But in all new and a little scary stuff we had other news on his educational testing.  Marvin has a really high IQ, cognitive flexibility, and his executive functioning was very high as well.  It seems that he was very high in most of the testings. So he is a smart little cookie.  

Children like Marvin are sometimes referred to as twice exceptional children.  Children who are off the charts in both directions.  But to me he is uniquely Marvin. 
Goofy, fun loving, and caring.  A child who one day runs around with shorts on his head proclaiming he is invisible and the next day comes to me and says, "Mama it doesn't make sense.  Pouring water on your head and posting it doesn't cure anything.  It just makes you look dumb.  Mamas and Dadas should tell their kids to study hard, go to school and be good doctors and scientists so they can help cure people who are sick."  He is one of a kind.  And we are blessed to have him in our lives.  



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Amy Fields is a blogger and mother of two Special and Unique kids:).  You can follow her on Many Kinds of Families

Monday, September 1, 2014

Deadline 9/5 - Many families may lose health coverage due to documentation discrepancies




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I don't usually have my worlds collide but I have a similar blog on the National Center for Family/Professional Partnerships for children with special health care needs that I'd like to share here with family caregivers as it is time sensitive.

Over 300,000 individuals[i] are at risk of losing health care coverage because of documentation discrepancies in their applications.  Letters went out on August 12, 2014 to these individuals.  Families and groups working with them can find out how to address this issue by following the tips below.
 
Why is this happening?
In some applications, the information about citizenship or immigration status is incomplete.  In others, the information supplied by applicants about their citizenship or immigration status is different from the information that the federal government has in their records.  Letters were sent out to families in 36 states to try to reconcile these discrepancies.  It is important to understand that families only have until 9/5/14 to supply the missing information or they will lose coverage, or lose access to federal financial help to pay for it, effective 9/30/14.
 
What can families do?
To make sure they don’t lose their insurance or financial help that makes it affordable, families can:
Ø  Look at the eligibility/reminder notice that describes who has information missing and the documents that are needed
Ø  Log into the account on the marketplace
Ø  Select “current application”
Ø  Click on “application details” which lists data that doesn’t match with other federal data already on file
Ø  Upload needed documents  
 
If families have already supplied information or need help:
Families can call the Marketplace at (800)318-2596 or TTY (855)889-4325.  There is also local help available which will go over paperwork with families to decide how to rectify the mismatch (see Resources.)  It is important for families to follow-up if they have already sent the information requested.  The Marketplace will confirm with families that the information was processed.  A Family-to-Family Health Information Center may also be able to assist you.  Visit http://www.fv-ncfpp.org/f2fhic/find-a-f2f-hic/ to find the center in your state. 
 
Families, especially those who have children with disabilities, need to make sure they keep coverage for their child.  Individuals with health coverage are diagnosed earlier, treated sooner, and have better health outcomes than those without coverage.[ii] [iii]   
 
P.S.  My blog on children with special needs and health care is found at http://www.fv-ncfpp.org/blog
 
 Resources:
 
 
Healthcare.gov notice
 
Find local help
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.


[i] http://www.washingtonpost.com/national/health-science/administration-warns-some-could-lose-insurance-coverage-on-federal-exchange/2014/08/12/efabd05e-223c-11e4-8593-da634b334390_story.html
[ii] http://www.cdc.gov/minorityhealth/CHDIR/2011/FactSheets/Insurance.pdf
[iii] http://www.cdc.gov/minorityhealth/CHDIR/2011/FactSheet.pdf

Friday, August 29, 2014

Heart Beatings

I find that some of the most difficult moments of special needs parenting occur when things are quiet.

I am seductively lured into a false and addictive belief that, as a family, we have achieved some kind of normalcy. For a moment, the rancid and toxic air that is our life, clears, I drop my warrior-like vigilance and begin to breathe the cool, clear oxygen. The refreshing air fills my lungs with a powerful force and I am rejuvenated, happy once again to be a parent like any other.



It is at these times of unusual quiet, when my heart becomes most vulnerable. It is when I am sailing serenely through life's doldrums when I am most often viciously attacked.

WHAM.

Like a victim of a drive-by-shooting, I have been targeted.

A single bullet fired from an anonymous attacker sails powerfully toward me and hits me squarely in the chest.

For a moment, my heart stops its life-sustaining rhythmic beat.

I cannot breathe.

And like a prize fighter stunned by the force of a single, strategically placed blow, I drop.



Yesterday, my heart was the victim of a yet another one of these hit-and-run attacks.

It has been a chaotic year for our family. We have been plagued by many unusual medical issues and difficult school placement negotiations. We looked forward to summer and the slower pace that accompanies it.

To relieve our stress, Nicholas and I spent much of our summer vacation meandering aimlessly throughout our quiet neighborhood, walking and talking quietly together.

The philosophy of "nothing to do and all day to do it" served us well throughout the summer and we learned to relax.

This week however, we have begun our preparations for Nick's new school year. One of them, to instill a more militant food security procedure in his classroom.

Nicholas and I decided that we will buy him his own lockable cabinet for school. In it, he will place his lunch. I will separate his meal into six separate snack bags. On every hour (9 am, 10 am etc) he is allowed to choose one bag and eat its entire contents. This allows him to be eating all day and minimizes the "when is it snack time?" questions for the teacher.

It is the same principle and technique we use at home. Nicholas loves his daily job of opening and closing our refrigerator and pantry. He loves keys and locks and containers. He loves having a job. He delights in locking everything up securely at night and opening it again in the morning.

Nicholas was very excited to incorporate this same food security procedure at school. Relieved, I think to learn he would not need to struggle with his food anxiety in the school environment.

I was feeling good about his happy response to this change.

I took a big gulp of the cool air.

He was so excited about this new procedure, he began to role play with his Dora Kitchen....a toy device we purchased years ago to help alleviate some of his obsession with food preparation.

He dragged his pink plastic appliance into my kitchen and set up his work space directly beside our refrigerator. Pretending that he was at school, he opened and closed the doors of his kitchen. Then, quite suddenly, he stopped. He looked at the big fridge and then at his own Dora fridge and noticed quite astutely that something was missing.

"Mom," he said to me with a matter-of-fact tone and a big smile,

"We need to buy me a lock for my Dora refrigerator."

And my quiet unsuspecting heart took yet another painful blow.



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

To learn more about Prader Willi Syndrome, visit www.pswausa.org.

Monday, August 18, 2014

One Donut Can Go a Long Way

We attempted another family "vacation" last week. Although we've come a long way and there are moments that are fun, where we're all together, doing the same thing and actually laughing, for the most part they are still work, work, work. And I don't have to tell you, it's harder to do what you do, away from home. We ended up coming home a day early, and Wil was the happiest of all to do so. He was so relieved to have his space, away from everyone else, free to be as noisy as he wanted while simultaneously not hearing anyone else's annoying noises. Suffice it to say, an open-floor plan loft, was not designed with our family in mind. "Don't we all feel trapped?" Wil asked on day 2.

The first morning Wil and I went to the little grocery store in the village. He picked out a donut and ate it while we shopped. When we got up to the check stand I said, "He had a donut, too," so we'd be sure to pay for it.

"Was it good?" the checker asked, with a smile?

"Ohhhhhh, it was REALLY good," Wil said.

"What kind did you get?"

"Chocolate. The kind with chocolate frosting on top, but not the kind with filling. Just the plain kind with chocolate."

"That's my favorite kind, too," she said.

"Well! We'll bring you one tomorrow! Will you be here tomorrow in the morning, Colleen?" he asked, taking a glance at her name tag.

"I'll be here!" she said.

"Well, we'll see you then, Colleen! We'll see you in the morning and we'll bring you a chocolate donut. Don't forget!"

"Oh, I won't forget! See you tomorrow!"

Wil must have reminded me 10 times in the next 24-hours that we had to go back to the store in the morning, and take a chocolate donut to our new best friend, Colleen.

"We will for sure. I won't forget," I assured.

The next morning he bounded out of bed at 5:45. Yes, the dog was up. Yes, the dog was noisy and ready to eat and we all got up then, too, but the biggest reason was he could hardly wait to get that donut to Colleen.

"Wil, she doesn't work at 5:45, the store isn't even open. We'll go about 8:00, just to make sure she's there.

And so we did.

With much fanfare, we picked out just the perfect chocolate donuts, one for himself, one for Colleen. "She'll really like this one," he said.

We finished getting our few other things and proceeded to the checkout lines. No Colleen. We picked another line and asked the checker, "Would you be able to give something to Colleen for us when she comes in today?"

"Oh, she's here right now. She's on a break."

"We have a donut for her," Wil explained.

"Well, in that case, I'll call her right up here."

Colleen came out from wherever she was and walked over to check stand 2, as requested. She looked a little confused until she registered we were the "friends" from the day before.

"We brought you a donut, Colleen, just like we promised!" Wil beamed.

She beamed back at him. "I love you, sweetheart," she said.

"I love you too, Colleen! Enjoy that donut! You have a great day!"

There's no doubt she did.

When you ask Wil what his favorite part of our 3-day vacation was, he is sure to tell you about his new friend, Colleen, and the donut he bought her.



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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.



Monday, August 11, 2014

The Undiagnosed

Imagine you are walking into someone else's house for the first time.  It is night and as you walk inside your host tries to turn on a light in the very dark living room.  Ooops, the bulbs have burned out.  Your host apologizes and runs to get lights while encouraging you to have a seat.  As you are left alone in the dark you really want to just stand in one spot but sitting seems much better.  You stumble over a end table.  Your hands reach out on front of you to ward off evil furniture spirits and the sofa jumps out and connects with your shin.

Now imagine the same scene but the light is on.  You can see everything clearly.  You find the couch, sit down, and manage not to come home looking like you and the furniture got into a street brawl. When the lights are on you can see what is there and how to work with it.

I would use the above description a lot back in my teacher days.  Especially when a child with special needs came my way.  I would encourage parents to seek answers so I could be the best teacher I could be for them.  Some colleges would argue that in looking for answers a child could become nothing more than a label or a diagnosis.  I would argue back that this would give me the tools that I needed to empower the child and help them succeed.

But what if you are not the teacher?  What if you are the parent?  For Cary Lynn her diagnoses were always pretty black and white.  There haven't been many surprises with them.  I don't define her by her needs, but work with her daily to be her best little person.  The lights are on and I don't run into too much furniture.

With Marvin it is so different.  All I got was "love him and he will be honky dorey".  Yay!  Nobody told me what meth can do.  Nobody told me about Shaken Baby Syndrome.  Nobody told me that taking an 18 month old out of a secure environment can wreak havoc and leave scars that last a lifetime.  Nobody told me that even if you are a violently abused infant that you don't outgrow and forget these things.

Don't get me wrong.  I did the research.  I sat with his social worker, my notebook of statistics and facts.  She was impressed.  I really did my work.  Or so I thought.  When Marvin came to us the lights in my house went out.  I tripped over so much furniture and banged my shins over and over again.

What has made it super hard is that years later I am still in the dark.  I find myself frustrated at times.  People saying he has this, or wait no he doesn't!  As I was talking to his therapist the other week about it he pointed out that kids like Marvin slip through the cracks so often because they can present pretty normally to the outside world.  And he can.  He is also a master chameleon, blending into his environment.  He had to be.  When he was little his survival depended on it.

Plus I am part of a new generation.  Raising a child who was born meth addicted.  I talk with other meth moms a lot and together we find solace.  We see our kids and the things they struggle with.  As one mom put it, "I tried to kill the best part of myself and nearly did.  When I see her struggle part of me breaks every time."  We break for our kids.

It also becomes hard explaining to the world around me about his needs.  Everyone wants him to be "fine". Heck, I want him to be fine! I would love to live in a world without specialty doctors, therapies, and a home routine that is so heavily structured.  I become frustrated at times just wishing for him to "snap out of it".

But that isn't going to happen.  Marvin can't help the meth or the abuse he endured.  He is always going to have needs.  Needs that others may not always understand or see but they are there.  He may also always live in the shades of grey when it comes to diagnoses as well.  Or he will fall into broad categories like traumatic brain injury and ADHD.


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Amy Fields is a mother to two special needs children and two demanding cats!  You can follow her on Many Kinds of Familes

Friday, August 1, 2014

Finding someone “who’s been there”




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Sometimes the hardest thing about being a family caregiver of a child with special needs is not knowing what to expect or just needing a listening ear.  There are many organizations out there to help parents of children with special health care needs. 

Parent-to-Parent
Parent-to-Parent (P2P) matches trained volunteer parents to families of children with the same condition or facing the same or similar circumstances.  The volunteers have been through many of the same experiences such as diagnosis, early intervention, and transition, or are impacted by the same systems, such as education, Maternal and Child Health Title V, mental health, or child welfare, and can offer good information.  They also offer emotional support when a parent is feeling overwhelmed.  P2P volunteers are also geographically matched by state so they would know of many resources ranging from therapies to recreation that are available to their family match. 

Disability Specific Groups
Many national and state organizations dealing with specific conditions also help families connect.  Parents can get a list of organizations either through Exceptional Parent magazine or the Parent Center Hub.  Exceptional Parent puts out an annual resource guide.  The Parent Center Hub has a listing of disability resources.  For mental health, the Federation of Families for Children’s Mental Health and also the National Alliance on Mental Illness are excellent resources.

                                                                    Photo centrolasamericas.org
 
 Other Matching Organizations
Friends Health Connection (FHC) matches individuals with specific conditions, or their caregivers.  This is especially important as children transition to adult care and can have someone with whom to communicate.  FHC also has an online community and offers free webinars.  Another good option is a support group.  The American Self-Help Clearinghouse lists support groups nationwide.  Here, parents can talk to other families going through the same experiences. 
 
Other Family Support Resources
Every state also has at least one Parent Training and Information Center and a Family Voices/Family-to- Family Health Information Center, staffed by families of children with disabilities and special healthcare needs.  Contacting Parent Centers and F2F Centers can connect families to support as well as information and training around early intervention, education, healthcare, and transition to adult systems of care. 
Parents of children with disabilities need to get information on their child’s condition and also talk to other families.  This way they won’t feel so helpless or hopeless.  Parents can talk to other families for information and support, making their family unit stronger.
 
Resources
 
Parent-to-Parent
 
Disability Specific
 
Exceptional Parent Magazine (annual resource guide- specific conditions)
 
 
Parent Center Hub-disability resources

Mental Health
 
Federation of Families for Children’s Mental Health
 
National Alliance on Mental Illness
 
 
Matching/Support Groups
 
Friends Health Connection
 
American Self-Help Clearinghouse (lists support groups)
 
Other Family Support:
 
Family Voices/Family-to-Family Health Information Centers
 
 
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 27, 2014

No More Secrets


Man is not what he thinks he is, he is what he hides.
Andre Malraut



I guess you could say, it is the dirty little secrets we hide behind closed doors that make us all human. We believe that if we hide our perceived imperfections and create a more perfect version of ourselves, we will be accepted by others. We can protect our fragile hearts from the excruciating pain of judgment, humiliation and societal scorn.

But when you are the parent of a child diagnosed with special needs you have no more secrets.

You cannot hide your child's differences.

Walkers, wheelchairs, and behavioral outbursts serve as disability trip wires alerting the world to our unwelcomed presence. We are exposed and vulnerable, helpless victims held hostage by the unwanted stares, comments and criticism of an ignorant public.


When you are here to teach the world, you lose the power to be inconspicuous.

You no longer blend.

You become the spotlight.

How you choose to use that spotlight is entirely up to you.

Most days you diffuse the comments and stares with hardened tolerance and polite unresponsiveness.

Then there are those other days, when you meet it with anger,

sadness,

humiliation,

even retaliation.

But whatever emotion you chose...

You lose the ability to protect your heart.

I was reminded of this last week, at Nick's 6th grade graduation ceremony.

Pete and I arrive early to the school and enter the empty auditorium. We survey the rows of empty seats and chose two chairs next to the aisle way.  As parents of a child diagnosed with Prader Willi Syndrome, we know a behavioral meltdown during this kind of event is highly probable. We need easy access to an open exit.

Large public events are difficult for Nicholas. His sensory sensitive body is quickly overwhelmed by loud noises and bright lights. He is unable to connect with someone speaking from across the room. He loses focus and the ability to sit still. But perhaps his greatest challenge is the heightened anxiety issues that accompany his repetitive thoughts about his inability to access food.

Pete and I are nervous, we know we are pushing it. But denial is a powerful drug for desperate parents.

Children and teachers begin to file slowly into the room.

Two of Nick's teachers spot us in the crowd. Sensing our nervousness they part from the group and approach us to calmly explain the plan for handing Nick his diploma. Their small act of kindness soothes our fear momentarily and we are comforted. But their noble effort to shield us from pain is quickly shattered as Nicholas enters the room.

"I WANT TO SIT WITH MOM AND DAD!" he screams and every head in the room turns to look at Nicholas.

His sped teacher, Mrs. T is holding his hand and although he is wearing his headphones to deaden the sound of a noisy room, he is already overwhelmed.

In an effort to soothe Nicholas, she walks him over to where we are sitting and asks him if he would like to sit with us. It is a brilliant idea since sometimes simple changes to the routine is all that is needed to prevent such a dramatic response.

It works. Nicholas is quieted and takes a seat next to me.

The room is filled to capacity as the ceremony begins. Several speakers take the stage and begin to call the names of students who have earned special award. I laugh to myself, knowing my child will not be one of them.

The list of names seems endless. Nicholas is hot and sweating and it isn't long before the loud applause and droning sound of nervous speakers begin to erode his patience.

"I CAN'T TAKE THIS ANYMORE!" he screeches.

The woman at the podium stops speaking. All eyes turn to us. My checks start to burn. It is as if our bodies are being targeted by a deadly, red laser beam emanating from the focused and scornful eyes of a room full of angry parents.

It is quiet as everyone waits to see what we will do.

Pete and I lead the crying Nicholas slowly toward the exit.

I feel a hot wave of resentment coming from the parents around me, angry that we have ruined their need of a perfect ceremony.  I focus my eyes on the floor knowing that I do not have the strength to control the rage I feel inside toward their overwhelming ignorance.

"NOOOOOOOOOOO. DON"T DO THIS TO ME." Nick screams.

Inside, my heart is saddened as I realize I have asked too much of my son. Selfishly, I have placed him in an environment he is not ready to handle. My need for normalcy and perfection has superseded his ability to endure such a show.

I pay for my selfishness.

Mrs. T leads us out of the auditorium, down the hallway and into the quiet confines of the motor room. Hanging from the ceiling is a large swing used to create proprioceptive input for the students who need it. It is the perfect instrument for calming Nick's outburst.

Pete places Nicholas on the swing and I begin to sing to him quietly.

"Row, row, row your boat, gently down the stream........."

Mrs. T heads up to the classroom and brings down his friend Alex who always manages to make Nick smile. Within a few minutes, Nicholas is quiet and comforted.

We head up to his classroom. Mrs. T sends a text to Nick's teacher Mr. P and asks if he could come to the classroom after the ceremony to present Nick his certificate.

It isn't long before the kind Mr. P arrives with a group of Nick's "typical" friends. They encircle his chair to officially present him with his diploma and a copy of his yearbook.

Nicholas smiles brightly. He feels happy connecting with this small group of special people. It is a quiet and intimate ceremony. Nicholas is surrounded by all of the people he loves most in the world creating a beautiful moment that is profoundly more meaningful to all of us.

As we drive home from this eventful day, my husband and I reflect on the chaotic experience and begin to laugh.

"You know Lis," Pete says. "There was a moment during the ceremony when Nick was screaming bloody murder and all the parents were shooting us dirty looks. But there was one guy standing near the back by the door. He looked me in the eye as I passed by and smiled at me kindly. That simple gesture comforted me and let me know that there was at least one person in the room who felt compassion for us and appreciated our difficult life."

I do not know the identity of the kind man in the back.

I probably never will.

Photo by Disney
But I will tell you this.... he helped me to realize that as parents of a child diagnosed with Prader Willi Syndrome, our "secrets" may be exposed to the world. But what is less obvious, and perhaps more important is Nick's unique ability to remove the masks of those who choose to judge him. He is like a mirror, reflecting the energy of the individuals who stare at him. He strips these people of their personal secrets and shows me exactly where they reside on their own spiritual journey.

Most observers who gawk or comment are scared, fearful, frozen or obnoxiously curious, displaying the character and actions of a childlike spirit.

But sometimes....just sometimes we are fortunate enough to find the hidden few who are truly enlightened. Angel-like souls who travel among us here on earth. Faithful, strong spirits unafraid to show compassion or stand beside us on our journey to learn new ways of assisting our special child.

Once again, it is my beautiful son who teaches me that it is we who are disabled, crippled by our need to keep our secrets. We repress our burning desire to embrace our imperfection and celebrate the true essence of what makes us worthy and unique.

 and in the process become less human and able to love.

It is our secrets that prevent us from living.

I am tired of being afraid to live.

I am ready to embrace Nick's humanness and desire for no more secrets.


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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com.
For more information about Prader Willi Syndrome visit www.pwsausa.org

Friday, July 18, 2014

A Natural

Wil just turned 18 on the 14th. We decided the thing to do was throw a big party; go into his adulthood with a celebration, and a gathering of the village that has gotten him thus far. We gathered 125 of his closest friends, and that is only the tip of the iceberg in terms of how many people he knows, how many people have touched him, and how many people he's touched.

Jenn, Wil's 1:1 aide from 3-8 grade, not only came, but brought a copy of a piece he'd written in 8th grade. I share it with you now:

COLLEGE


I have two hundred reasons why I don't want to go to college. It will take fifty-five hours to tell you the whole story. I'm going to give you three reasons. 1. I will miss my friends and family. 2. I'm sick of working so hard. 3. I want to skip college and be a dad.

I have been working for nine years straight. So after my thirteen years of schoolwork then I will be free.

Instead of going to college I want to have 3 kids. Alexander Mikey and Zackary. I will be a stay home dad. My kids can't go to the store with me until they are at least two. I don't want to deal with all the crying. They will be home schooled until they are three because the school doesn't have pre-twos. I would say to my wife that we have to have the same answers. If they have sleepovers then she would say yes and I would say yes. My kids will have everything. If my kids want to sleep in the same room then sometimes I will do it. Every fall we have to go to high school football games. I will love my kids.

I really am not going to college. I have other stuff I want to do.


Sandra, one of his preschool aides, came. She had put together a photo album of pictures from the two years he was in her class. Most were copies of pictures I'd already seen, since the preschool did an excellent job of creating memory books for us each year. But there was one, this one, that tugged, particularly, on my heart. The cock of the head, the sweetness, the effort it took him to coordinate his hands and eyes to do what he chose to do during free play: feed a baby. That's Wil all day long. Always has been, always will be.


Wil just spent a week volunteering with the 4-year-old class of Vacation Bible School. I got a message from a friend that said, "Please tell Wil thank you for being so patient and kind with my grandson. He's a natural with young children."

I've come to believe that whenever we're a "natural" at something, it's because we have past-life experience with it. Probably many past lives. Perhaps all of them. Lifetime after lifetime of practice that leads to wisdom, that leads to being a "natural." I truly believe Wil is going to find a way to be the "dad" he's always wanted to be.

Luckily for the world, it won't be just 2-3 kids he parents, but classroom after classroom of kids, year after year, until one day he's an old man, long retired from his "job," and arriving at a birthday party of one of his former students. He'll have with him a hug, a memory or two, and a place in that person's heart, forever.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.