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.

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.  

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

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

https://www.healthcare.gov/blog/still-need-to-send-documents/ 

 

Find local help

https://localhelp.healthcare.gov/

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.

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[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