Thursday, October 30, 2014

Slow Motion Mothering

I am a fast moving kind of a gal.

I like to go, go, go and get things done, done, done.

I like making lists and checking things off.

I guess it would be safe to say that I am most happy when I am moving.

But this fast moving, freewheeling, on-the-go lifestyle is not very conductive to raising children diagnosed with things like sensory processing disorder and poor motor planning issues.

In fact, I have discovered, somewhat reluctantly, that raising my children is all about learning how to slow things down, way down. It is a painful life lesson often delivered to me with blunt force trauma to the brain.


But applying the brakes has never come easy for me.  For a long time, I resisted this notion of slow motion mothering. I continued to run faster than a speeding bullet, slowing my pace only slightly as I dragged my overwhelmed children from one chaotic event to another.

I was surprised, even angry, when my children began to scream and cry.

I thought at first, that the trouble was them.

What I have learned most recently..... is that the trouble is me.

As many of you know, Nicholas has been diagnosed with Prader Willi Syndrome. Many individuals diagnosed with this disorder are also diagnosed with dyspraxia.


Dyspraxia is a developmental coordination disorder that causes weakness in comprehension, information processing and listening.
 
It is a disruption in the way messages from the brain are transmitted to the body.
 
Often children diagnosed with dyspraxia also have issues related to the processing of sensory information. 
 
 
Too much sight, sound, smell, touch or taste information delivered too fast to the body overwhelms the brain resulting in emotional overload.


What I have learned is......this behavior is not telling me ...."I want to be defiant"

It is telling me.........."I'm overwhelmed"


Slowing things down and minimizing the amount of sensory input is crucial to enabling my son to be successful in this world. It enables him to enjoy loud events, boisterous activities and large crowds.


As a mother of a child diagnosed with this condition it is my responsibility to slowly build Nick's sensory endurance. Introducing events and new experiences slowly, building each time in intensity so that he can finally begin to function and relate better to our fast-moving world. This is a necessity if he is ever going to be able to live on his own, go to school or secure a job.

And so it is with much difficulty that I am learning how to slow down the eager speed demon.


Now if I can just get the rest of the world to understand this important lesson.


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

Saturday, October 18, 2014

Presense


Vowed to start (rather, re-start) yoga when school started back up in the fall. It started back up, and so did I. This is my last back-to-school fall, the last time I'm going to let my son trick-or-treat, the last season of football games, the last of so many routines, rituals and rhythms that have come to mark the passage of time.

Yoga is helping me to be present. For one hour, I am "there." I am not in my head. Not planning the future to a T. Not dwelling on the past. Not making a list. Not replaying the incredibly ignorant/annoying/maddening thing someone did or said. I'm present.

It helps that I'm not very good - I need to really pay attention to the teacher. I need to hear the instructions, and see what she's doing, for it to make sense to me. By the time she's said, "Let's do the other side now," I've long forgotten what the first side did.

Savasana is as close as I've ever gotten to an out-of-body experience. At the end of the practice, lying on the mat, laid over a dirty carpet, people all around me, I am in another place. They also call it the Corpse Pose, or final relaxation.

As the mother of a special-needs adult, what happens to him when I'm actually a corpse, is ever on my mind. To make my whole life one big yoga practice, is the goal. To be present. To listen. To watch. To keep breathing. To stretch. To add-on when I can, and adjust when the "pose" is too demanding - that's the key.

And to be at perfect peace for the "final relaxation."





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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.


Saturday, October 11, 2014

Happy Birthday!!!


She came into my life like a rolling thunder storm.  A little nine month old.  She came with one broken cardboard box full of clothes and shoes that were too small and broken toys.

A week later we were in the hospital with a child who nearly died two days after coming home to us.

Two long scary weeks later she came home to us.  She had lost three pounds and I was terrified that she would not make the year.  But she did.  You see no one told her she had an expiration date stamped on her.
We celebrated not one but two birthdays!!  Two precious years with a medically fragile child is an amazing feat.  She has shown me courage, strength, and grace.  She has taught me that life is a beautiful fragile web.  I don't dwell so much in the future but live for today, She is my hero and next week we get ready to celebrate another milestone.  Three.  My daughter has made it to three.  For me that is such a blessing.

What the year brings I don't know and frankly I don't want to.  I choose to live for today and celebrate my daughter.
Happy birthday little girl!  Mama loves you and is proud of her warrior daughter.  You bring me more joy than you know.
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Amy Fields is a mama and a blogger.  Follow her at Many Kinds of Families.

Wednesday, October 1, 2014

Will my child be able to decide for him/herself?




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Many parents have fears for the future of their child with special needs.  Families wonder if their child will be able to take care of themselves, including making medical and other life decisions. 

Is Guardianship the Best Choice?

Families may not realize that once their child is 18 (or the age of an adult under their state law), they get to make educational and medical decisions on their, regardless of their disability.  Because families may have questions about their young adult’s capacity to make their own decisions, or because a professional may encourage them to do so, they may consider going through a legal process to have a court declare the adult with a disability not competent to make decisions and give “legal guardianship” to their parent(s).  Many individuals with disabilities, and a growing number of parents, now see this as a civil rights issue, as it essentially takes away the ability of the person with a disability to decide about their own life.  While in many states there is the ability to apply for “limited guardianship,” there are also other options that avoid the need for guardianship and maintain the civil rights of the adult with special needs.
 


                                                                               www.ncil.org
 
 
Alternatives to Guardianship

There are many tools other than guardianship that parents can use to participate in decision-making on behalf of their young adult with special needs while still maintaining the civil rights of the adult.  For example, parents can use a “power of attorney” or even a form signed by their young adult authorizing them to participate in and/or make decisions for their young adult (see Resources and Forms below.)  There is an excellent guide for self-advocates, “Self Advocacy Guide to Guardianship” (see chapter 2) from Disability Rights Idaho, available at http://www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf. 

www.aboutkidshealth.ca
 
Children and adults with disabilities need to have input using independent or shared decision-making to the best of their ability.  Families and self-advocates need to be aware of their choices, so that they can pick the options that best suit their needs.  For more information, please see our factsheet at http://www.spanadvocacy.org/content/alternatives-guardianship-health-decisions-families-young-adults-special-needs.
 
 
 
                                                        autisticadvocacy.tumblr.com        
 
 
Resources:
Alternatives to guardianship resources can be found at:
 
Ø  Alternatives to Guardianship
 
Ø  Guardianship & Alternatives to Guardianship http://www.ridlc.org/publications/RIDLC_Guardianship_Booklet.pdf
 
Ø  Guardianship and its Alternatives – (see Chapter 3)
 
Forms:
Sample healthcare power of attorney/advance directive forms
American Academy of Family Practitioners (AAFP)
 
Please note: This information was current at the time of publication. But medical information is always changing, and some information given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site.
 
Helpful Contacts:
Parent Training and Information Centers
PTIs help families with many issues, including transition to adult life.  Transition is more than school-to-work and also includes adult healthcare, post-secondary education, and self-advocacy.  PTIs can be found at http://www.parentcenterhub.org/find-your-center/
 
 
Centers for Independent Living - CILs maximize skills needed for independent living, supports needed to achieve this goal, and maximize potential of individuals who may not live independently.  CILs are found at http://www.ilru.org/projects/cil-net/cil-center-and-association-directory.
 


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.
 
 
 
 
 
 
   

 

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.