Tuesday, August 27, 2013

Social Skills Camp and The Island of Misfit Toys

It has been an interesting summer for Weston.

While most boys his age head to lake-front camps in New Hampshire or summer baseball leagues, Weston's activities included summer school, doctor's appointments and a colonoscopy.

To make matters worse, our advocate suggested he attend a "social skills" training camp at the local ARC. This was a one week program designed to help children with social difficulties learn how to develop good relationship skills. The camp focuses on things like how to initiate appropriate conversation and how to make and keep friends. It is designed to educate children on reading social cues, making eye contact and reading facial expressions.

While learning these skills is important to my son's social success, it is not exactly conducive to a fun summer vacation. Especially since Weston has difficulty relating to boys of similar temperament. You would think that a diagnosis of ADHD would make him more sensitive to others who share this disability. But unfortunately, it is exactly the opposite, he has little tolerance for loud boys with an abundance of energy.

Go figure.

Despite my apprehension about camp, I try to help my son endure yet another summer challenge.

His anxiety issues make it difficult for him to see the positive in any given situation. In fact, his first instinct is to hyper focus on the negative. Much of my job lately has been to help train his brain to balance his perspective, to see the good as well as the bad so hopefully he can find the truth somewhere in-between.

This has been helpful therapy for me as well, since I share a tendency toward negative thinking. I suppose the apple doesn't fall too far from the tree.

We drive toward the ARC and social skills camp on Monday, with Weston's anxiety in overdrive.

"This is not going to be any fun Mom! Why do we have to do this?"

"I tell you what Weston. Let's just give this a try. You may actually like this camp."

My feeble attempt at trying to brighten his mood.

"Maybe you'll meet some interesting kids." I offer lightly.

"I am NOT going to like it," he states emphatically.

Since my attempt at being positive is failing so miserably, I turn to desperate negotiation tactics instead.

"OK, I'll make a deal with you," I said, "If you don't like it, we will never do it again, OK?"

I try to sound optimistic, but on the inside, I am not sure if it is him or me I am trying to convince.

"Alright," he says reluctantly.

I park the vehicle and we head toward the building. There is a small group of parents and children waiting outside the door. As we join this circle of anxious mothers and awkward children, a vivid image of The Island of Misfit Toys pops into my head.

The parents in our circle seem sad. Like me, they are battle-worn and disheartened from enrolling their kids in too many "programs" that guarantee to assist their children in building friendships but often fall short of fulfilling that promise and further perpetuating their children's feelings of defeat and isolation.

Many of these parents stand silently, avoiding any eye contact and lacking the desire to engage in polite conversation. I wonder if we too are socially disinclined? Or is it something else? Have we lost our ability to embrace hope? Do we believe deep down inside that we are setting our children up to fail once again? More importantly, when do we give up trying to quietly blend our children into a world that is as awkward and unprepared to welcome them, as they are to enter it?

The tension is as thick as a blanket as we wait for the Program Director to arrive. Many of the children become bored and begin to show signs of anxiety escalation. They fidget nervously, shuffling their feet or swinging their arms, desperately trying to expel their nervous energy and calm their sensory sensitive bodies. I am surprised how organizations like this one, that are designed to accommodate our children, often suffer from an inability to implement simple procedures that alleviate stress.

As I think about anxiety and stress and misfit toys, I can't help but wonder, if perhaps as a society, we have it all wrong.

Perhaps the problem is not our children?

Perhaps the problem is that we are a society that does not understand how to relate to spotted elephants or a train with square wheels?

Perhaps we are a society that lacks its own social skills training?

To me, substantially separate classrooms and social skills training camps feel alot like islands for misfit toys.

If it is truly inclusion that we seek, then as a society we must not rely solely on educating differently-abled children to fit in. We must also teach our citizens to become more tolerant, more disability-aware and more socially enabled to overcome the stigma associated with those who are different.

We must teach ourselves how to understand children with sensory issues, behavioral challenges, physical limitations and communication difficulties. We must educate teachers and students on how to relate to those who struggle to fit in. Isn't engaging all individuals and empowering them to communicate their ideas, their skills or their spirits, a skill we could all benefit from learning? Isn't this really what "social skills training" is all about?

I think about the general population and how often we encounter folks who just don't get our children. They struggle with what to say or do. Fear seems to inhibit some folk's ability to communicate so they ignore us all together. Other's experience a fear so great, it festers into hatred.

But I also believe that there are many individuals who would welcome the chance to learn more and feel at ease with the differently-abled community. I believe many would welcome the chance to learn how to relate to individuals who act, think, speak or move differently.

If full inclusion is really our intent for our children, in both school and life, then education of the general public must be an important piece of this philosophy.

I must admit, I was once one of these uncomfortable others. It was only after I became immersed in the special needs lifestyle that accompanied the birth of both of my children that I learned, somewhat reluctantly, to understand a new set of social skills.

I learned calming techniques that helped my children to cope. I learned how to understand anxiety, what causes it and how to alleviate it. I learned to modify my approach when handling individuals with behavior issues that stem from a disability and not from a desire to be unwillful. I learned skills that helped me address all types of different personalities. I learned to be patient.

What I discovered was these techniques seemed to help me relate better to everyone.

What if we taught these skills to the world?

What if social skill training and disability education were a school requirement?

I can't help but wonder how successful our children could be at making and keeping friends if tolerance, acceptance and understanding were qualities embraced not only by our children, but by the entire world?

I am happy to report that Weston's camp experience was a good one. He enjoyed the young, hip counselors and looked forward to seeing them every day. He met a young boy named Drew who shared many of his similar interests. He was successful at asking for and receiving his phone number.

I believe he finally found a place in the world where he felt a sense of peace and belonging.

As we jumped into our vehicle and headed to the ARC for Weston's second day of camp, his usual negativity turned into a very new emotion. With a smile like the Cheshire Cat, he turned to me and said...

"Mom, I am really excited about going to camp today."

I suppress a sudden urge to slam on my brakes, leap from the car and run hysterically around my vehicle pumping my fists in the air.

Instead, I turn to my son and simply say.....

"I'm proud of you."

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Lisa Peters shares her stories of family life at www.onalifelessperfect.blogspot.com. Please feel free to come visit and share our adventures.


Sunday, August 25, 2013

Raising Activists

This past June I took our daughter Quinnlin to Washington, DC to speak to legislators about several
issues that impact PKD (polycystic kidney disease) patients. Among the issues, we were asking for support for a bill that would allow coverage for immune suppressant drugs beyond the 3 years the government currently pays for from the date or organ transplants ($1,000-2,000 per month). When people can't pay for their drugs, they can lose their transplanted kidney and go back on dialysis to the cost of over $10,000 per month.

We talk a lot about the issues our kids face medically, socially, and legislatively so this was a great time to show Quinnlin in action what it means to be an activist politically.

She wanted to present her story herself so we settled on her sharing her story with a flip format presentation on paper with pictures. Here's the copy (minus the pictures):

My name is Quinnlin. I am 11 and I have PKD. My brother has PKD too.
His name is Gage and he is 14.

 PKD stands for Polycystic Kidney Disease and the cysts grow in our kidneys and make our kidneys not work.

 Some kidneys grow to the size of a football.

 We have been through a lot. My brother almost died. He had to have dialysis.

We both had kidney transplants when we were 8 years old.
We need liver transplants some day too.

We were tested at the NIH in 2008 and we have raised a lot of money for PKD research. 
We need more research though. 
We wish we could have taken something that would make the cysts go away.

I hope you will remember my brother and I when you think about
funding for PKD research, changing FDA policies, the shortage of kidney donors 
and inadequate Medicare coverage for my kidney drugs. I hope other kids don’t have to go 
through what we had to go through.

Thank you for listening to my story.

We had four appointments during one day so there was a lot of running around to appointments with a lunch in between them to sit and visit with fellow activists, including a dad who lost his baby to PKD. 

I am proud of her for a lot of reasons... how she behaved with other activists, the role-playing at training she volunteered for the day before in front of 70 people, her patience during all the waiting, but mostly I'm proud of her because she wanted to be there and share her story. My activist in training.

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Julia Roberts lives in Atlanta, Georgia with her husband and two kids. The kids have had kidney transplants, will require liver transplants one day and have learning disabilities and mental illness. She blogs at Kidneys and Eyes and is the co-founder of Support for Special Needs. 

Monday, August 19, 2013

Being "Mom"

Sometimes I wonder what things would be like if I never became "Autism Aware".  I mean, when Big Brother was turning 1 year old (he's an April baby), every time I turned around, there were Public Service Announcements (PSAs) of what to watch for to see question if your child is on the Autism Spectrum.  Well, we refer to Big Brother as our "Anti-Autism Child" because almost all of the warning signs were absent.  After the twins were born 9 months later, we had forgotten all about those PSAs and we never thought to look at them again.  Autism would never touch our lives.

But when Ballerina and Music Man were 26 months old, we learned they were both "Clearly On The Spectrum".

That was March, 2009.  Since then, I have been learning more every day about Autism and living with this diagnosis.  I've been learning how to handle the issues associated with Autism, what to watch for and when to watch for other potential issues.  I've learned about medications used to treat Autism and ADHD and we've tried a few of them.  I've learned about IEPs and 504s and I spend a lot of time making sure that both of my children receive the services that they need in order to grow and succeed.  And I obsess over things for them.  I defend them when I feel it's necessary and I discipline them when it is appropriate.  And I work hard to make sure they understand consequences because I don't know if they will be able to connect actions to consequences on their own.

Then I look at the way I parent Big Brother.  Remember him?  The "Anti-Autism Child"?  I watch the way HE looks at them and defends them when he's with his friends.  And I see how he has become their protector when they are not at home and their tormentor when they are within the walls of our home (like any other brother).  I see him going out and playing baseball and soccer, participating in Cub Scouts, going to Hebrew School to prepare for his bar-mitzvah, doing his homework, and reading his many books.  I see him growing up and doing so many of these things independently.

Music Man has no extra-curricular activities.  He simply doesn't WANT them.  He wants to play on the computer or read his books.  This year, we're trying to see if we can get him involved in something else.  He'll be taking a dance class for special needs kids.  We are also going to try private music lessons for him because he really does show an affinity towards music.  And I'm going to give Cub Scouts a try as well.

But with Big Brother, he always wanted to do these things.  You present an opportunity for a new activity and he'll JUMP at it.  We have reached a point where we are trying to find things to drop from his schedule because there simply isn't enough time.  For Music Man, I'm having to force these things on him.  I don't plan on doing this for long.  I just want to expose him to things so we can figure out what kind of activities he likes.  Because, when left to his own, we'll NEVER see where his interests and passions lie.

I never thought I would be forcing my children into activities.  Completing what they begin, yes.....that's very important to me (I don't believe in quitting [except for very rare circumstances]).  This is one of those things that is part of being an "Autism Mom"......and one of those things I wouldn't have expected.

But I'm a Mom first.....and Moms always do what they feel they must do.

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My name is Ilene and I am always trying to figure out how to get everything done.  I'm a happily married Stay-At-Home-Mom to 3 amazing children, two of whom are on the Autism Spectrum and a dog.

I would like to spend more of my time doing things that are considered "productive", but it hasn't been working out that way lately.  I'm hoping with the start of a new school year, I can get back on track.  When I find the time, I blog at My Family's Experience With Autism, where I share the stories of my children and my own personal revelations.  Feel free to stop by and share our stories.

Sunday, August 18, 2013

Special Needs, Special Heartache, and a Special CD

Wil has worked in a preschool this summer, the same one in which he's worked for the past two summers. By "summer" I mean he has actually worked 17 mornings, from 9:00 - 1:00. We'll take it, right? 68 summer hours otherwise occupied, a break, some structure, some learning of skills and the joy of knowing you can go do something for those few blissful hours, even if "bliss" means having a mammogram, or perhaps a dental cleaning, or if it's a big day, both.

For some of the kids, Friday was their last day, and Wil decided they needed an end-of-summer present from him. He made me a list of songs he wanted me to download from iTunes and then burn on a disk. He was unwilling to consider buying a CD for $9.99 with 150 kids songs already on there, no, he wanted to shop and search through iTunes for the best possible rendition of some of his favorites. Let it be known that his original playlist also included "Centerfold" by the J. Geils Band. "Care, we'll just find a version that is instrumental, then it will be appropriate."

Fortunately, or unfortunately, depending on how you look at it, there was no such version, so the revised playlist was minus one centerfold. If that song happens to be stuck in your head, as it is now in mine, or if you're interested in having it stuck in your head, go ahead and press "play" below.

Wil definitely wants to work in a preschool when he finishes high school. That may only be for one year if he has it his way, as he will be nearly 19 when he finishes, and still insists we'll all be moving to Anaheim the minute he turns 20, to live in the Castle at Disneyland. His kids will want to be close to Disneyland, and what's closer than the Castle? Kids like Disneyland, and he aims to please.

This adherence to the plan, his story, what he tells anyone and everyone that asks him, was darling when he was younger. Now I silently curse the poor souls that ask him what he's going to do after high school.

He's about to start his junior year - in a high school where well over 90% go off to college when they graduate, Not only will he not technically graduate, he will not be "going" anywhere. Not to community college. Not to a four-year college.

And not to Disneyland.

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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, August 15, 2013


This is my least favorite time of year.

Summer ends. School starts.

Routines are trashed and rebuilt.

Everything is new.

Not good for a kid with autism. Or his mom.

He's getting a new self-contained teacher, and a new teacher for second grade. He's going from the relaxed state of summer to the structure of school, the pressures of therapy and learning, and the social expectations of school.

Basically, we will both be thrown out of our comfort zone.

I worry about him, how he'll handle it, how the year will go...

Then I realize, I have to learn to let go. I can't control this.

And that's what it's all about. Controlling everything. And that's not life, as much as I want it to be. It makes our life easier, sure... but I can't do it forever.

So this year on the first day of school, I will take a deep breath, and just hope for the best. I will not imagine everything that could possibly go wrong. I will be okay with just taking care of any problems when they happen, and not worry about everything beforehand.

Wish me luck.
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Kate is a parent to two awesome kids, one who happens to have autism. She blogs at Okay, who turned out the lights?.

Wednesday, August 14, 2013

Misguided Anger isn't the Answer (But Sometimes I Can't Help Myself)

My husband has been sick for a few days, sicker than I think I've ever seen him. Thankfully it isn't anything serious, a very bad cold or maybe the flu. He's been down for the count for several days, and although I've quite enjoyed having complete control over the Roku for the last few nights, I haven't appreciated having to manage the most difficult parts of our day, from dinner through bedtime, by myself.

And of course, when our son, who has tremendous sleep challenges is finally having a decent streak of sleeping through the night, my husband's coughing kept me up for a good part of last night. As I attempted to get a few hours of sleep on the couch, I had some choice words for the man.

But obviously, this is not his fault. He clearly would not choose to feel this way, and was feeling pretty darn miserable himself. And yet, despite my concern for my husband's health, I couldn't help but feel angry. At the situation, yes, but also (completely irrationally) at him.

My son Moe, who is autistic, has been having a pretty rough time. Though things have evened out a bit, we had a couple weeks of truly horrendous behavior. He was waking for several hours every night. He was having major meltdowns several times a day, was biting and scratching at an all time frequency and intensity. He was clearly struggling and my heart broke for every time he would melt into tears and frustration and I had no way to help him.

And yet, as I had to wrestle him to the ground for yet another diaper change, dodging scratches and bites, I couldn't help but be angry. Not just at the situation, but at him. I am not proud to say it, but I'd be lying if I didn't think to myself "why does he have to be like this?" I am able to take a step back and remind myself that as frustrating as things are for me, they must be a thousand times harder for Moe. But at 2:00 in the morning, when he is maniacally giggling and running into walls, the overwhelming feeling I have is, just plain pissed off.

I know that I am frustrated at an impossible situation. But being angry at "the flu" or at "autism" doesn't feel particularly satisfying. It is much easier to place blame where one doesn't exist. People do it all the time, yelling at the customer service agent who had nothing to do with making your computer and is just trying to help, or flipping off someone in traffic who cut you off but was probably also just tired from a long day at work.

It happens. We're only human, after all. And I'm not going to claim to have any answers as to how to stop being angry, or how to live with the frustration of a situation that is out of your control. Sometimes it is enough to just write it down, admit to the feelings, however irrational, and go about the rest of your day.

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Jen Bush is a writer, blogger, and speaker. You can follow her family's autism story at Anybody Want a Peanut? And check out her new blog, The Dinner Rush!

Sunday, August 11, 2013

Dear Krabbe Disease

Dear Krabbe Disease:
You have officially tried my patience this summer. I am truly exhausted by your presence in my house. You have officially sucked the life out of my soul and spirit and have created a sense of despair that I did not know possible. I am sick of living with a gorgeous child who is trapped inside her body; she cannot walk, talk, eat, poop or bathe on her own accord.  She is alive and beautiful; she laughs and breathes and giggles and smiles and burps like the best of us.  But you vile disease have robbed her of her ability to hike up a mountain with her twin sister. She can't have pillow fights with her grandfather.  She can't even wade in the lake or swim in a pool without a huge amount of assistance to cool off in the summer heat.  Instead, you cheap lousy bastard have moved into my house, which is already too small.  You have set up shop next to the oxygen tanks and suction machine and monitors to make sure we know we are never having a typical summer.  Every summer your presence seeps into our house with a horrible reminder that we cannot have too much fun, otherwise, you might throw a tantrum and spike a high fever just to remind us who is boss around here. Day in and day out you are a major killjoy! Your presence adds tension to every relationship in the house.  Thanks to you Krabbe, we have a parade of people in our house who get to witness how we parent, houseclean, cook, fight, love and relate to each other. We have an audience for everything we do, including coping with your ugly face.  I'd like to kick your scrawny little unmetabolized lipids out the window so I could feel what it's like not to have so much pressure surrounding me for a while.

Consider this an official eviction notice. As of today, you are no longer welcome to reside with us. You cannot take my daughter or any of her allies or other little people who you have also tried to destroy. You can just go away now.
A really tired and angry mom.      

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When Kirsten isn’t dealing with progressive deterioration of the brain of various family members, she is a professor of Communication Studies at the State University of New York. She is also the mother of two awesome seven year old girls who are going into second grade and she loves living in Vermont.

Moments of Grace

Sometimes things just don't go as planned. At all.  I hate having bad weeks, because for me it is never just one bad thing, it s lots of bad things.  All at once.  It's hard to stay positive when they happen, but sometimes there is that moment during the day when something positive, funny or downright ridiculous happens that steps in and saves my sanity.  I call these moments of grace.

They happen at times when I would really rather just go home, hide and eat chocolate.

A moment found me after I left a psychiatrist's office.  My son had been having anxiety attacks and we couldn't calm him.  The abuse he suffered before he was adopted is massive.  The Dr. believes that he has PTSD and lots of loops misfiring in his little brain where his bio mom hit him again and again and again.  He has to have massive amounts of testing done and believes that if he is bad enough we will send him away.  Sitting in the office listening to him was like ripping my heart out of my chest and stomping on it.  I was driving home with the kids and we passed a man well endowed with hair everywhere, in a speedo, on a bicycle.  My son could not stop staring and told me that maybe the man was trying to take a shower (it was raining).  O.K.  so I know it's not nice to laugh, but it did make me smile.

A moment found me when I was in the drugstore stocking up for my son's colon cleanse.  When we were at the GI doctor we found out our son has damaged his body from holding it and is very stretched out down below.  It will take about a year to fix it and I will basically be toilet training my 6 year old from scratch.  Starting with a massive colon cleanse.  I had Cary with me picking up all the stuff tarps, pull ups, wipes, Lysol, and all that good stuff.  A woman with blue hair, a baseball cap, and an I love Memphis shirt stops me and looks at my stuff and Cary.  Without missing a beat she says, "My my they can sure make smellies at that age.  I remember my son...."  here she launches into a really great story and the best part is that her grown up son was standing there looking like he wished the earth would swallow him up.  She ends with the fact that he is now a toilet trained productive member of society and not to give up.  I must say that was a big moment of grace.

A moment found me when Cary got her leg braces and we went in search of shoes.  We went to a specialty store after I checked out several with no luck on finding shoes that fit over braces. I was frazzled, frustrated, and tired.  I explained my delima to the sales lady who also happened to be a manager and she and another woman not only help me find shoes, but socks, and a pink leopard print skirt.  I went to pay and that angel simply charged me for the socks.  She looked at my daughter and me and told me that I was an awesome mom and  that my kids were so lucky to have me.  I about cried.  Another moment of grace.  And now I will be shopping there on a regular basis.  I was asked not to tell the name of the store and not to mention it in the store, but I will be a shopper there from now on.

So these were my moments this week.  Things that kept me going and sane.  I know some weeks will be like this and some weeks won't, but when they are I will look and find grace.

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Amy Fields is a wife, mother, and a mom to two SN kids, two cats, two rabbits, and a opossum who thinks he is a pet.  You can follow her at Many Kinds of Families.

Monday, August 5, 2013

The goal posts keep moving!

The goals for my son have changed considerably over the years.

Year One:  I just knew that I was going to have a happy contented baby who would be just like his incredibly easy big brother. ~ Turns out he was a baby who didn't sleep, wouldn't eat and cried ALL the time.

Year Two:  I just knew that if I took him to Mums and Tots he would have an absolute ball and start engaging with his peers AND learn how to clamber and climb and play. ~ Turns out he didn't have a clue what was potting and I was absolutely devastated to see the difference between my child and his peers.

Year Three: I just knew that if I sent him to the same playschool that his big brother went to, then he would begin to communicate with the children around him. ~ Oops, turns out this didn't happen AND I eventually had to organise a facilitator to attend school with him.

Year Four: I don't think I can remember Year Four!

Year Five: Damn it, I am just going to bypass this year.

Year Six:   So this is the year that my little boy should be starting big school and I had visions of him dressed up in his khaki shorts and red t-shirt,  running off to his mates without a backward glance. ~ Oops, instead we started a small school in order for him to actually have a school to go to.

Year Seven:  We had visions of doing a bit of travelling with our two boys. This didn't happen as my boy COULD NOT cope with any changes in his environment and he needed a rigid schedule. We did take a trip overseas but without our precious boy. Bittersweet. :(

Year Eight: It's a blur.....

Year Nine:  To be honest, I had expected my child to be toilet trained by around the age of three/four. ~ Oops, just a little bit late, although we now have him peeing in the loo. I am not going to mention the other.

Year Ten:  Okay, I have come to terms with the fact that my earlier dreams are far from happening. Time to make me some new plans ~ When, where, what, how..... who knows!

Year Eleven: Plodding along. Feeling a bit sad that I don't really have a wonderful connection with my boy. I am me, he is he. Two separate people, existing. Enough of the blues ~ time to be proactive and create that connection.

Year Twelve: Oh. My. Hat. My boy is losing his cuteness factor. He is growing fast and puberty is knocking on the door. The years have flown by too quickly. I am looking at his social and emotional development and revisiting stages that were missed many years ago.

Year Thirteen: It's a funny ol' thing, my style of parenting has changed considerably from when we first started our autism journey. My son has now got a new and improved *me*!

Year Fourteen: Seven years ago my boy could not travel (see Year Seven). This year we took a short plane trip and stayed away from home for three nights. I am thinking that once I get his food issues sorted, we may need to rethink future travel plans and be sure to include him.

Onward and upwards.

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Di is the parent of a 14 year old boy who just happens to be autistic. You can find them here and here!! :-)

Thursday, August 1, 2013

Get Ready ‘Cause Here it Comes…

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One of my early blogs was healthcare reform 101 for family caregivers of kids with special needs.  Reforms for children included no lifetime caps, no cancelling policies, continued coverage until age 26, and free preventive care.  This helps families of children with special needs financially.  Please note that some plans may be grandfathered (most won’t be) and won’t have to follow prevention requirements, and that requirements are stronger for group rather than individual health plans.  However, if your state has better benefits such as dependent coverage, preexisting condition coverage, or mental health parity that’s better than the federal law, state law will still apply.  By getting the best healthcare for your child and family, it will give you peace of mind, especially that your child with special needs will get necessary care.

One-stop Shopping
Did you know that starting Oct. 1, there will be “exchanges” now called “marketplaces” where families who need health insurance can have one-stop shopping for health plans? The Marketplace will have “qualified health plans” which must include “essential health benefits”.  Essential health benefits include: “ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care.” According to Healthcare.gov, a marketplace is “a new way to find health coverage that fits your budget and meets your needs. With one application, you can see all your options and enroll.”  There will also be “advanced premium tax credits” to help lower income families afford insurance and the Marketplace will automatically let you know if you qualify.

Special notes on disability issues: 
The Marketplace will only select one plan.  Families with children who have special needs may also be able to have private insurance as well as Medicaid and/or Medicare.  Also, even before healthcare reform most states have a “certification of the handicapped” provision, now usually called “disabled adult dependent,” that allows families of children with developmental disabilities to keep the dependent covered as long as the parent is employed regardless of the age of the child (so you would need to get the form from the insurance company before the child turns 18.)  Also, even if a child didn’t qualify for Medicaid because of family income, at age 18 the child is considered a “family of one” and may then be eligible.  Also some children may be dually eligible for Medicare for example, those with kidney disease or whose parents retire.  I bring these issues up so that families are aware that their child with special needs could have both public and private insurance with “coordination of benefits” which means that the family would have less out of pocket expenses.  It has helped our family not go into medical debt.

What’s Next?
You can check out the video on what’s coming in the next few months in the Marketplace at https://www.healthcare.gov/quick-answers/#step-1.  Again, this will also let you know if you qualify for help to pay for insurance.  There is also a glossary of new healthcare terms under search on the homepage of Healthcare.gov.  In addition, there will be help available to families from “navigators”, “certified application counselors” and some states will have “in-person assistors.” 
For families that can’t wait for coverage
There is a plan finder already on Healthcare.gov but the actual Marketplace will be up 10/1.  Before 1/14, health plans could still deny coverage if you have a “pre-existing condition”, women may be charged more, check what’s covered as there aren’t yet essential health benefits, and families can’t yet get help paying for insurance.   So remember that ACA protections won't be in place in plans until Jan. 2014 but this is a good safety net for people who may not be able to wait.

So get ready to “shop ‘til you drop” starting in Oct. to get the best coverage for your child and your family.

Resources on health care reform for families of children with special needs:

Ongoing information on healthcare reform and children with special needs.
*Georgetown Center for Children and Families http://ccf.georgetown.edu/aca/
Up-to date information on how healthcare reform affects children and their families.

*Healthcare.gov www.healthcare.gov
Information on the Marketplace, tax credits, terms, and healthcare reform in general.

 If you need insurance now: 


 Remain Hopeful,


Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, 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.