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.

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.

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

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

http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx

 

Disability Specific

 

Exceptional Parent Magazine (annual resource guide- specific conditions)

http://www.eparent.com/

 

 

Parent Center Hub-disability resources

http://www.parentcenterhub.org/topics/disability/ find your center http://www.parentcenterhub.org/find-your-center/

or Spanish http://www.parentcenterhub.org/lista-espanol/

Mental Health

 

Federation of Families for Children’s Mental Health

http://www.ffcmh.org/chapters

or Spanish http://translate.google.com/translate?hl=en&sl=en&tl=es&u=www.ffcmh.org (“involucrate”)

 

National Alliance on Mental Illness

http://www.nami.org/Template.cfm?Section=Your_Local_NAMI&Template=/CustomSource/AffiliateFinder.cfm

resources only in Spanish http://www.nami.org/Template.cfm?Section=Child_and_Adolescent_Action_Center&template=/ContentManagement/ContentDisplay.cfm&ContentID=21090

 

 

Matching/Support Groups

 

Friends Health Connection

http://www.friendshealthconnection.org/

 

American Self-Help Clearinghouse (lists support groups)

http://www.mentalhelp.net/selfhelp/

 

Other Family Support:

 

Family Voices/Family-to-Family Health Information Centers

http://www.familyvoices.org/states

 

 

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.