The Bruce Springsteen of Parenting

I believe that parents who raise children diagnosed with special needs are a lot like the rock stars of the parenting world.

In fact, if I had to choose a rock star we most closely resemble, I would say...

We are a lot like Bruce Springsteen.

Let me explain.

In the early years, Bruce Springsteen was a skinny, scruffy teenager living in New Jersey.

He was defiant, rebelling against his religious upbringing and the social dogma associated with high school.

He was different.

 Former teachers have said he was a "loner, who wanted nothing more than to play his guitar." He completed high school, but felt so uncomfortable that he skipped his own graduation ceremony.

I am sure at some point in his life his parents had nightmares of retrieving their son's body from the city jail or perhaps even the local morgue.

How is it then, that this young man was able to achieve greatness?

His words resonating with folks from all over the world?

Now, I am no Einstein, but I believe that his success....not his "fame" or the "I am the most popular man on the planet" success but his "ability to relate to others" success...originates from an energy that comes from somewhere deep within him.

If you are a Springsteen fan, you know his song lyrics are more like poetry, an honest reflection of his pain. He uses "more words in some individual songs than other artists use in whole albums"

In the recording of his album "Born to Run," Springsteen battled with anger and frustration, saying he heard "sounds in his head" that he could not explain to the others in the studio.

Concert-goers have likened the "Boss" experience to a spiritual awakening.

He does not question the origin of the voice in his head but instead expresses it, exposing the true essence of his soul. This heartfelt expression creates a type of energy that has a powerful attraction to those who are also willing to bare their souls, celebrate their suffering and in the process begin to heal themselves.

I believe "soul" energy is a very powerful thing.

It is what connects us as human beings. We are drawn to its purity.

I believe there are many other folks in this world who also possess this unique ability to become in sync with their soul. They are poets, writers, athletes, physicians, scientists. mathematicians and yes even special needs parents.

To me, what is unique about Bruce is his ability to be present.

He is alive.

He is in the moment.

His spirit is not confined within walls.

He is free.

Laws and rules have no meaning.

There is no boundary.

There just is.

And for Bruce Springsteen, the "IS" is always changing.

In my quest to embrace special needs parenting, to me, it is all about becoming Bruce Springsteen.

When you are the parent of a child diagnosed with disease, your ability to assist your child is directly related to your ability to be present, to truly "see" your child. It is about having the courage to create a new normal. It is about listening to that voice. It is about embracing and implementing change.

Can you see the spirit that lies beneath your child's disability?

Can you discover the shining life energy that is difficult to see in a child who cannot walk, talk, write or behave?

Without speaking, can you connect with this energy?

Will you love this energy, unconditionally? Can you enable and free it?

Teaching others to see it too?

Are you brave enough to feel the brutal pain of raising a special child. Can you describe this pain honestly to others feeling free to expose the nakedness of your soul?

Can you surrender to it?

Is it in you to defy laws, rules and the expected way of doing things to create a new normal?

Will you change?

Do you have the power to be yourself and understand what makes you special?

Can you create your own unharnessable energy that has a powerful attraction to those who are also willing to bare their souls, celebrate their suffering and in the process begin to heal?

Can you see that which connects us all?

Knowing that we are all born to run.

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

Change is Our One Constant

One thing is a given in our world and that is change. It can be for the better or for the worse, but change will come. We will either welcome it, as we did with our son's mental health stability, or we will tolerate it because we have to; as we did with the symptoms that came along with our daughter's kidney failure five years ago.

It's helpful as parents if we learn to change with our circumstances. It's helpful as a mom and it's helpful as a couple because doing so brings us some sense of peace in the knowing Things. Will. Change. The thing is; they change for everyone. What's makes us so different from everyone else?

The change, a lot of times, can be big, life-altering change. That's true of learning your baby or child has an incurable disease, it's true of learning there are certain dreams you had for your child that will go unfulfilled and it's true of a new symptom or treatment. Change is inevitable, but when life-altering change happens in the world of parenting a child (or two) with special needs it somehow seems easier to think of the ever-present change as normal.

Change is always present. We've grown so accustomed to it that it's become a sort of cloak of armor that we use to sure ourselves up for whatever is coming next because whatever it is might mean life-altering change.

Change is our one constant.

In March we'll be celebrating seven years of my son's new kidney (can I call it new anymore?); his so far, successful kidney transplant. For about nearly five years we'd asked to reduce or stop the steroids he was on and for five years the answer was "no." They said, "He's hardly on any, and it's probably not impacting him at all." or "It's not done. Not a good idea." The thing is, 60% of the people on prednisone after transplant do not need to be on it and the only problem with this is that you don't know what 60% so many centers put all of transplant patients on it. Luckily, our daughter was part of a study and received drug infusions eight weeks after transplant and at over four yeas since her transplant, she's not needed steroids. Since they are genetically similar, we decided it was a good risk to advocate for our son stopping the steroids.

Two years ago we asked again, and after five years of asking, our care team finally relented.

We're not 100% sure of what kind of impact steroids had on our son, but we're fairly certain it has had some impact because no one can tell me they've had a good experience being on steroids. People have told me they rage, they're angry, mean, emotional. Those are just about all the things that our son felt, amplified, the year (and next couple) after transplant. It was no small change for him, for us; the contemplation of him being steroid free.

The team performed a biopsy to get a baseline and watched his labs, weekly, for six months. The biopsy, the wait, the removal of the drug and the waiting and testing and waiting and testing. And waiting. Waiting for change is normal for us and over those next weeks (months?) it was important for me to remember that this is one of those things I couldn't control. It'll either work or it won't but I couldn't control it.

He successfully came off of steroids but at the time I wouldn't have been surprised if he had to go back on them because either outcome would not have surprised us, because rarely does something surprise us anymore. 

It's safer to know that things will always change. We just never know if it will be for the better.
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Julia Roberts co-founded Support for Special Needs in 2010 for families touched by special needs. Married to Julian and living in Atlanta, Georgia, they own a small business. They are raising two kids who survived kidney transplants at age eight and require liver transplants in the future as a result of ARPKD/CHF, they also both have vision disorders and learning disabilities.

It Will be Fine

"Write a post about how whenever you're worried about something, people say really annoying things like, 'It will be fine,'" my friend implored me months ago, when her oldest child was going off to college, and she was having a lot of anxiety about it. I've been thinking about it ever since, but haven't had the right words, the right frame-of-mind, the right space to ponder why that's such a universal response and yet so universally not-reassuring, but actually the opposite.

Brene Brown says that the difference between empathy and sympathy, is empathy never starts a sentence with, "At least..." I think that's the problem with "It will be fine," it lacks empathy. It's a pat answer, and dismisses all the layers and layers of any emotional response or anxiety.

I hate when I'm all fired up about something and my husband says something inflammatory like, "Just don't worry about it." While its true that my worrying might not be productive, there is no "just" not doing it.

That is not to say that we don't have ultimate control over our responses, and we always can choose an alternative response or emotion, but that takes a lot of practice and hard work. I don't know about you, but when you're in the eye of the storm, it's very, very difficult to do additional practice and hard work. It's only after you've come through the storm, or at least the worst part, and made a fragile peace with the storm, that you can roll up your sleeves and get to work, in preparation for the next storm that life throws your way.

The other problem with "It will be fine" is we think "fine" means things will work out just the way we hope and pray they will. If they don't, we don't think things are "fine," they are, in fact, anything but fine. Again, it is usually only in hindsight that we have any kind of perspective on the "fineness" of how things "worked out," and that may take more than one lifetime to be revealed.

I am writing this on my own son's half birthday. In exactly six months he will be 18. While he and we are "fine" now, there is great anxiety about what will happen in his future. Where will he live? Where will he work? Will he be safe? What happens when we die? Will he ever have the family of his own that he talks about constantly? Will it all be "fine?" And what must we do to pre-pave and make it so? It's much easier to believe in "fine" when you're working your ass off to make it so.

The only thing to do is support each other as we trudge through, waiting for "fine." We must offer our help, our shoulders, our listening ears, as we hold space with one another through the un-fine parts. We must be empathetic without being sympathetic, never minimizing another's situation and struggle, but walking along side them through the deep end, until they can climb out and be "fine."

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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.

When It's Hard to Hope

There are times in my journey that it gets hard.  That I just want to get off the merry go round of life and head to a beach or something.

This week has been brutal.  Marvin recovered from Christmas break and started school again.  He was not happy to go.  All of his anxiety took over and he spent most mornings crying and afternoons holding onto my waist and crying.  Why doesn't teacher like me?  Why can't I understand the words?  Why can't I do the work?  Why can't the cat eat out of the refrigerator?  O.K. the cat didn't have much to do with school, but it kind of sends mommy over the edge to see the cat being fed out of the fridge.

We also have had unpredictable weather.  I miss living up north in a way.  The people didn't cringe over ice and snow.  So we missed school.  While I am typing this it is raining and school is closed.  Well it was a bit of ice mixed in earlier and I don't begrudge the school for being cautious and trying to avoid lawsuits from people when you have a child who needs routine and structure and you yank it out from under them it doesn't bode well.

Cary Lynn picked up a really rotten cold that has been going around causing her to feel generally miserable.  And cranky.  Plus she doesn't want to eat and we go to a new GI on Monday.  So that will be loads of fun.

To top off a hard week we went to neurology.  That is usually one of my favorite doctors.  I like who we have.  She is positive and usually pretty great to visit.  And after a fun trip to the pediatrician yesterday because of Cary's bad cold (we have to do lung checks to make sure her lungs stay gunk free) I was ready for this visit.

But this time was different.  This time we talked about Cary Lynn's MRI.  In depth.  I think I have gone over some of her unique brain functions a few times.  But here is what I walked away with:

1.  Her brain is injured.  Severely.  Picture a brain.  A healthy one.  Now imagine that it has been subject to massive damage.  Tons of mini strokes, excessive fluid, and hemorrhaging. These damages are irreversible.  They simply can't be fixed.  No surgery, no vitamins, nothing.

2.  Cary Lynn functions may be limited.  I knew that.   Her cerebellum is also affected.  She may never walk.  Or be able to communicate.  She may function at much lower levels.  She has the possibility to have seizures at the drop of a hat and her shunt can stop working at any time.

3.  Because of all her complexities her life span may be limited.  Very limited.

I am not God.  I really don't want that job.  But that last one was hard to hear.  It was like stabbing a knife in my heart and soul.  Then I was blithely told that there was not much they could do, see you in six months.  I really wanted to snap back, if my child is alive, sure no problem!  But I didn't.  I just made an appointment.

The thing is Cary Lynn is complex.  Marvin is complex.  The blu-ray player in my house is complex.  Life is complex.  It is hard to hang on some weeks.  But I do.

I did take away a few positives from the visit.  Cary Lynn is doing more than they thought she would be able to.  After poking at her a few times at home and feeding her cookies in her mesh she certainly didn't act like she was about to pass into the great beyond.  So I think we are good.

My children are fighters.  They have come so far.  I know that they may not be able to do things.  I know that they may have limitations.  But am I gonna tell them that?  Hell no.  At the end of the day we don't know what their futures hold.  The doctors have all admitted that.

It can be hard to hope.  It can be hard to have the dreams you have for your children come smashing down around you.  But you start to build new dreams.  I can't loose my hope because if I do my children loose it as well.  And I can't do that to them.  Or me.

I also can't dwell in the land of tomorrow and what ifs.  It will destroy me.  So I choose to live day by day, minute by minute.  I will take it as it comes.  The good, the bad, and the dirty diapers.  Because I refuse to give up.  I refuse to loose hope.  My children show me strength and courage day by day.  I owe it to them to do the same.

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Amy Fields is a mother, teacher, and busy advocating for her two kids!  You can find her at her blog:  Many Kinds of Families

Random Thoughts

Where do I draw the line? How much do I share about my precious kid? Is it okay to spread his lows and highs across the internet? Am I doing it to create autism awareness or am I sharing because it makes me feel better? Do I feel that I need to be perfectly blunt about the realities of living with autism? Or, perhaps, do I gloss over the bad stuff and just concentrate on the positive moments in order to get over my own sadness because life is tough for my kid?

Is my sharing just part of that process of coming to terms with my lot in life? There are literally thousands of autism stories being shared daily. It is possible to completely lose myself amongst the denial, pain, grief, anger, love, acceptance and any other emotion that is being thrown out. It is also incredibly easy to get pulled into those emotions because of the autism connection.

I find myself moving away from all the anger, bitterness and judgmental posts. I don't like feeling those emotions and I refuse to fight on the internet. I like to keep on top of genuinely honest and thought provoking information, although as my child approaches the age of 15, I am finding that my reading is becoming more selective. I choose what suits our situation.

I no longer read blogs written by anonymous Autistic people who write from their own perspective; specifically those that tend to give parents a hard time - their brand of autism is not my son's brand of autism and I refuse to be bashed by them because they think they know my son better than me!

There are so many wonderful people out there and the stories they share create a connection, an online support group of sorts. This is where I tend to hang out!

The Internet is a powerful tool, although one I try to use wisely. Whatever I share is going to be out there in cyberspace, forever and a day. I will continue to write about my son's progress and perhaps some of our struggles, however, I will always respect that he is a person, who at this present time, is unable to speak for himself. I will always presume competence and bear in mind that one day he may have the tools to advocate for himself.


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Di is the parent of an autistic teen. She blogs over at The Bright Side of Life.

Autism in the East V West

Dear Readers

A very happy new year to you. I am writing this post from a small town called Purulia in India. We are at  my parents’  for the holidays

Where I am sitting – I can hear the loud gossip of a gaggle of ladies who are surrounding the tap right outside my parents house (as befits their premier status in the community).The ladies are collecting the government water which comes for an hour each evening and is “soft water”- unlike the hard water that is in the wells of each house .

The steady stream of stray animals that are semi-adopted by my mum and dad who come at their appointed time for food and conversation, has finally abated.

It’s all so different from my rainy  home in the suburbs of Seattle

In Purulia, I swap my Levis ,  for Salwar Kameez and a  big red bindi and turn native for 4 weeks.

Since ( I think) I am both of the East and the west, I thought I would write  some of my observations on autism in the east Vs Autism in the West.

Some similarities and some differences. (Of course these are my personal observations and not scientific statements so take it with a big pinch of salt)

Awareness is great but you can have acceptance without awareness

R’s grandparents don’t understand autism per se, but they understand and accept R just the way he is. He is a favorite owing to his quiet charming ways and his family tries to figure out what pleases this eccentric little person- handing him the calendar with dates when they see his fascination with numbers, giving over the main TV for his Wii and making sure that the Wi FI is working.

I do have the odd aunt who chastises me for not making sure R eats many varieties of foods, but for the most part they marvel at the way he smells everything and gasp with wonder when he plays a classical piece on the little piano on his iPAd. In every way they  make him feel beloved and accepted

There are pioneers everywhere

In the city where my MIL lives- Dehradun – we go  to see Nav Prerna. The first autistic group home in India says the founder. We meet the kids who are attending a music class. Its remarkable place. Some kids come for daily therapy and some kids stay there. Many of the children are severely autistic but Saswati Singh( the founder and herself the mother of an autistic child ) has created a very well structured environment. She believes strongly in GF CF diet, no electronics and mostly organic and natural medicine. The kids are thriving there.

Pioneer mums and dads too

Like in the West, Eastern parents also make great sacrifices for the kids. At the center, we met some parents whose kids just come for the day. One mother that DH and I chatted with for a long time has a 4 year old child at the center. To come to the center – she is living in a rented apartment and away from her husband.

I asked her whether her parents or in-laws mind this unorthodox arrangement to which she says  “ i don’t bother about anyone when it comes to my kids.”

There are many parents here too – just like the west – who are desperate for a cure not progress- ie they will mortgage the house for HBOT  but not want to pay for therapy.

In the East, Academics first

Indian parents are obsessed with academics( if any of you have kids that have Indian kids in the class – you will see that this is one Indian stereotype that is very true) - and it’s the same with their kids with autism.

As opposed to Seattle, where we meet many children who have higher functioning autism, each child with autism that we meet here is very obviously autistic.

I think parents do not seek a diagnosis for kids with mild autism. Also kids with no academic problems would not be seen as having any issues.

The social set up with the options still of joint families and arranged marriages is such that a child with Asperger’s or HFA would have a ready-made structure to compensate for their social challenges.

I think both the East and the West have a lot in common when it comes to disability. They also have a lot to learn from each other.

The West has gifts of the scientific approach to progress for autistic children –while the East has the gift of acceptance.

In our home – we try to combine both

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K writes about love life and autism at www.floortimelitemama.com

Budget Cuts-How It’s Affecting Special Kids & Their Families

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It’s not your imagination

    Family caregivers may have noticed that it’s harder to get services for their children with special needs in some cases.  A recent study conducted by the Council for Exceptional Children in collaboration with the National Coalition of Personnel Shortages in Special Education and Related Services, indicated that “94% of respondents say that districts feel the impact; 82% cite too few personnel to deliver services.”  The study found that budget cuts have caused layoffs of 1/3 of personnel, and positions that become vacant are not refilled.  Other concerns cited were that 83% of respondents state that budget cuts have already impacted the delivery of special education services, increased caseloads, and resulted in larger class sizes.  61% of respondents are in high poverty districts and have Title I funding. 

First, the bad news

    It’s not just special education cuts that affect children with special needs.  Cuts have been made to other areas such as healthcare, human services etc.  So access to medical and mental health care have been affected, as well as family support programs.  Family support could include respite, assistive technology, home modification, and other services for individuals with disabilities.  As an advocate, I’ve never written as much testimony on special education, family support, healthcare/mental health, as I have in the past 2 or 3 years, all aimed at highlighting the challenges that would be faced by families if yet another program cut were to materialize.

And now for some good news

    But it’s not all bad news.  There have been innovations in some of these areas as well.

Ø      Although there was accountability for special education for the first time under No Child Left Behind (e.g. having highly qualified teachers in content areas, not just special education), there was concern that some children hadn’t been exposed to the curriculum on which they were being tested, or had behavioral issues that would interfere with accurate scoring of their abilities.  Now states are adopting the Common Core Standards which concentrate on college and career readiness.  Under NCLB, academic progress was made both by children with disabilities and typically developing peers due to the use of differentiated instructional techniques.  Advocates hope that this continues and that the Common Core takes into consideration the special needs of children with disabilities both in instruction and in assessment.  You can find out about the assessment accommodations available under the PARRC and Smarter Balanced Assessment Consortium Common Core State Standard assessment initiatives on their websites at http://www.parcconline.org/parcc-accessibility-features-and-accommodations-manual and http://www.smarterbalanced.org/wordpress/wp-content/uploads/2012/05/TaskItemSpecifications/Guidelines/AccessibilityandAccommodations/GeneralAccessibilityGuidelines.pdf

Ø      The Affordable Care Act is allowing more families to access either a Qualified Health Plan, or Medicaid in states that had expansion.  There are other benefits such as not excluding a child from coverage or dropping a child with a preexisting condition, no annual or lifetime caps on benefits, and continuing dependent coverage up to age 26.

 

Ø      Some states have developed a Department of Children and Families which oversees most of these family support programs.  Some programs, such as those for individuals with developmental disabilities, mostly focused on the adult population.  Now, in these states, almost all of the programs for children are “under one roof.”    

 

What can family caregivers do to get the services their children need?

   Family caregivers must advocate for the services needed by their children with disabilities.  For information on the Common Core Standards, see http://www.corestandards.org/.  Other information on special education can be found at the U.S. Department of Education, Office of Special Education and Rehabilitative Services parent and family section of the website at http://www.ed.gov/parent-and-family-engagement.  If family caregivers need help with special education issues, they can contact their Parent Training and Information Center at http://www.parentcenternetwork.org/parentcenterlisting.html.

 

 

    For information on the Affordable Care Act, see https://www.healthcare.gov/.  If family caregivers need advocacy regarding health issues, they can contact their Family Voices State Affiliate Organization or their Family-to-Family Health Information Center (in many states these are housed together) at http://www.familyvoices.org/states. 

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    An overview of family support services can be found at the Child Welfare Information Gateway at https://www.childwelfare.gov/supporting/support_services/index.cfm.  If family caregivers need help navigating family support services in their state, they can contact Parent-to-Parent at http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx of their Governor’s Council on Developmental Disabilities found at http://www.nacdd.org/about-nacdd/councils-on-developmental-disabilities.aspx.  If families are looking for support around their children with mental health needs, they can find their closest chapter of the National Federation of Families for Children’s Mental Health at www.ffcmh.org

 

   

 

 

 

 

 

    Budget cuts are affecting children with special needs in various areas.  By finding out their rights, and what programs offer, family caregivers can have the best results for their children with special needs. 

 

Other Resources:

Council for Exceptional Children http://www.cec.sped.org/

 

 

 

 

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