Sunday, July 28, 2013

Prior Authorizations and the Making of a Paladin

As a parent of two children diagnosed with special needs, the two most despised words in the entire English language are:

"Prior Authorization"

No, scratch that!

The two most despised words are most definitely:

"Insurance Company"

Let me explain.

My son Nicholas suffers from Prader Willi Syndrome. While an incurable and insatiable appetite is the most defining aspect of this syndrome, he also has been diagnosed with a multitude of dysfunction related to the brain, namely, epilepsy and narcolepsy.

The hypothalamus is the area of the brain that is interrupted by PWS. This small portion of the brain is, among other things, a control center for things like circadian rhythms and sleep cycles. Since the hypothalamus is not working correctly in individuals diagnosed with PWS, they often experience difficulty regulating sleep. Daytime sleepiness, night time wakefulness and narcolepsy are sometimes the end result of this brain disruption.

For the past few years my son has struggled to stay focused and alert at school, making it difficult for him to concentrate and more importantly, learn. This daytime sleepiness was so pronounced it inhibited his ability to learn to read.

Thankfully, my son is followed by a very proactive Neurologist. This kind and gentle man treats Nicholas with the latest medications that have helped my son live a healthier life.

After several discussions with a well known PWS expert endocrinologist as well as several PWS parents, this wonderful Neurologist and I began a trial of a medication for Nicholas called Provigil.

Provigil is used in the treatment of narcolepsy.

Nicholas is covered by two insurance companies, Blue Cross Blue Shield and CommonHealth.

He is considered "disabled" by the state and therefore qualifies for MassHealth (medicaid). My husband makes too much money for us to receive this "no cost" option. So instead, Nick is covered by another division of MassHealth called CommonHealth. We pay $120/month for this additional insurance.

Since Nicholas has been prescribed a number of expensive medications, this supplemental insurance is a necessity for us. We would not be able to afford all of his medical treatments on my husband's sole income. Nick's medical complexity and sheer volume of physician and hospital visits makes it impossible for me to work.

Thankfully, for several months both BCBS and MassHealth covered the cost of Provigil.

Nicholas thrived at school, and with the assistance of a wonderful teacher and this medication, he finally learned to read at age 11!

You can imagine our happiness. Our son was finally reading!

In July, however, we received a notice from MassHealth suddenly denying the coverage of this important medication.

They requested that our Neurologist fill out a prior authorization.

For those of you unfamiliar with a prior authorization, it is like "paperwork from hell" to a physician and his staff. He must now fill out a detailed form that describes his decision for treating his patient with this particular medication and wait for an approval from the insurance company.

I do not know about all of you, but questioning a competent physician/specialist on his treatment decision seems a little bold and somewhat disrespectful to me.

Our very accommodating Neurologist however, was compliant and provided this agency with their requested information.

A few weeks later, I received a noticed from said organization explaining that the physician had not provided enough information about the medical necessity of this medication.

So, once again our kind Neurologist now had to submit more data which included the results of my son's overnight sleep study.

I thought this was overkill, but if there is one thing our Neurologist is, it's thorough.

I was wrong, and once again, the medication is denied.

Now I receive a notice from MassHealth explaining that there are less expensive versions of this medication. My faithful Neurologist and staff call MassHealth who informs them of a medication called Nuvigil.

After careful evaluation of this new medication and discussions with me, our calm and competent Neurologist agrees to prescribe this new medication.

I am extremely thankful to Nick's Neurologist and tell him so. He has invested far too much of his time resolving this issue which has no doubt taken his time away from treating other children diagnosed with neurological issues.

Once again however, the medication is denied! This time by both BCBS and MassHealth.

Still my Neurologist and his staff persist. They call MassHealth and are connected directly to the pharmacist who now tells my esteemed Neurologist that MassHealth never recommended Nuvigil and Nicholas must have an overnight CPAP procedure before they will approve this medication.

A CPAP procedure is used to diagnose sleep apnea (a cessation of breathing during sleep), not narcolepsy!

Once again my kind and patient Neurologist explains to this pharmacist that a CPAP is used to diagnose sleep apnea and is not required for a narcolepsy diagnosis.

Our Neurologist is not successful in convincing this pharmacist and our medication is once again denied.

A CPAP procedure is a costly overnight study that is typically performed in the hospital. It is a particularly difficult test for the patient and often results in further disrupted sleep.

BTW, the original cost of the Provigil to MassHealth is $61!

My older son Weston, diagnosed with Autism/Aspergers/ADHD, is not qualified to receive CommonHealth, despite his disabilities. And even though he is covered by BCBS we still spend almost $400 per month on his medications. Add to that our costs for BCBS and CommonHealth and you see where most of my husband's monthly income is spent.

To rectify this medication denial, I must now submit a form to MassHealth requesting a hearing.

I will now be required to prepare the necessary paperwork and subpoena witnesses. I will have to hire a babysitter, drive to Boston and represent myself in a hearing with the state.

Of course for a nominal fee, I can hire an attorney. Except for the fact that my husband and I have already depleted our savings by hiring an attorney last year who found an appropriate school for Nicholas that helped him learn to read.

It has now been two months since my son has received his medication.

There are no laws to prevent insurance companies from behaving this way.

If I resolve this issue, there are no laws to prevent them from doing this to Nicholas again with another of his medication treatments.

I have contacted our Attorney General's office and requested a hearing with them. They cannot by law, force MassHealth to comply.

They are also a state-run is MassHealth!

If you are a reader of our blog, you know that last year's health and school issues did a number on our family and we are eager to find some happiness and peace in our lives.

It astounds me how often this special needs lifestyle requires me to pick up a sword.

Throughout Nick's 11 years of life, I have met many formidable adversaries who stood like ogres obstructing my son's journey and denying him a comfortable passage through life.

Because of the sheer number of these bloody battles, my husband, a reader of fantasy fiction, likes to call me, a Paladin.

What is a Paladin, I asked.

"A Paladin is like a knight who protects the weak, brings justice to the unjust, and vanquishes evil from the darkest corners of the world," he explained.

"They are the healers and guardians of goodness, they are surrounded by light."

For now, my husband's image of a Paladin has helped me to embrace my difficult role. I have put aside my weariness and will continue to advocate for both of my children.

They deserve to be happy and free from the side effects of incurable disease.

I will continue to fight for them.

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Lisa Peters writes about her family adventures at Please feel free to drop by for a visit.

To learn more about Prader Willi Syndrome, please check out our national organization at

Thank you for reading.

Saturday, July 20, 2013

Just One More

Once you get married, it seems like people almost immediately begin to ask, "When are you going to have kids?"  It seems like a given; a boy and a girl fall in love, they get married, and they have the typical 2.3 kids, picket fence, and the lovable dog.

I know that after Jack was born - and before we knew that his challenges were more than just temporary detours in our lives - we had people asking when we would have another.  I put the questions off; in reality, we planned to space them out by about 2 years, but we always knew we wanted just one more baby.  We felt that our son deserved a sibling.

Suddenly, when Jack was diagnosed with autism and a million other things at the age of 2, those questions stopped coming.  It was as though people automatically assumed that we would be done having children since we had one with special needs.

The thing is...we weren't done.  Knowing our son was autistic, we wanted him to have a sibling more than ever.  We wanted him to have a playmate, a confidante, and a friend.  We just didn't want him to be alone.

After a year and a half of trying and not getting pregnant, then "giving up" temporarily, then trying again, we finally had our miracle baby.  Then, at 14 weeks, we lost our baby in the 2nd trimester.

Suddenly, I encountered the taboo once more.  Of course, when you lose a baby during pregnancy, the assumption is that there was something "wrong" with the baby.  So, the comments I started receiving ran the gamut of insensitivity.  Many people said, "It was probably for the best."  Others still went as far as to challenge my ability to handle more children - saying, "You probably couldn't have managed 2 disabled children anyways."

As I look back on it, those comments - and the lack thereof after Jack's diagnosis - highlight a common taboo that we place among special needs families.  I think that the popular opinion is that once you have a child with special needs, suddenly you need to reconsider any plans for expanding your family.  Certainly, it is assumed that you wouldn't be planning - much less trying - to have another.  After all, your hands are too full.  You have a lot to deal with and a child who costs a lot to raise.  How would you bear the financial and emotional burden of another child, particularly another child who might have special needs?

To the people out there who wonder what the hell us special needs parents who go on to want to have more kids might be thinking, I want to share some insights.  First, I know many parents of typical children who aren't financially ready to add to their family.  Really, who is?  No one is fully prepared for just what a child costs and how it will change your family dynamic.  Just because my child's medical needs are what is a financial priority versus extracurriculars and camps does not mean that my family is any less (or more) prepared for more children than the average family.

Second, I don't know why people assume that us special needs parents will crack under the pressure of having (potentially) 2 special needs children.  Is it what any of us want?  Absolutely not, but that's because we don't want our kids to struggle; we want life to be easy for them.  As for me, having another autistic child would not be the end of the world.  In fact, I know more of what I'm looking for this time around as opposed to the unknowing neophyte mom I once was.  I know how to start Early Intervention and put together an IEP.  I know how to apply for Medicaid waivers and have successfully done so.  We already have a developmental pediatrician.

So you see, I've already done most of the leg-work for number 2.

Third, I think people assume that just because my first child is autistic that all of my subsequent children will be as well.  Maybe, but maybe not.  Sure, statistically the odds are higher that any subsequent children I have will be on the spectrum, but the odds are greater that they won't.  I choose hope rather than pessimism.  And if that child is autistic?  Well...see the point I made above.

Instead at looking all of the reasons to give up, I look at the reasons to keep trying.  My son deserves a sibling.  He is a fantastic kid and would make a wonderful big brother.  A sibling would also be a constant social challenge to him, which would surely aid in his social development as so many friends with kids on the spectrum tell me.  

And what about just wanting a 2nd child?  Can't we be like any other family and simply wish to welcome another into our hearts?  All children are a blessing, and no child contributes any less than the others to the happiness of a family - special needs or not.  I would never presume to tell someone else what is best for their family, so I don't understand why having a special needs child opens my family up to criticism regarding our choices.

Even though we have one special needs child and even though we lost another, we still want that living sibling for our son.  I don't think that is so wrong of us.  And sure, would be be scared?  Absolutely, but aren't all parents scared about what the birth of a new child might mean for their families and their lives?

And so we keep trying.  And wishing.  And hoping.  Just like every other family.


Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 4-year old little boy on the autism spectrum.  After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.  

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings and get the latest on her posts, like her on Facebook or follow her on Twitter!

Friday, July 19, 2013

Revealing the Fangs

This week, for the first time, something happened.  I heard another child say something hurtful about my son.

My daughter has a friend who sticks up for her regularly and makes sure that my daughter is included, even when it means fighting with HER best friend.  And many of my daughter's classmates asked me this school year why my daughter is so "weird" (especially in the first half of the year).  That doesn't bother me so much.....kindergarteners are very open and the only way they will learn and understand is to be taught.  When they asked me this questions (and other similar ones), I always told them the truth -- that she doesn't see things in the same way as everyone else.  That she's just has smart as everyone else, but she thinks differently.  There are some things that she does really well, and others that she has to work at, just like everyone else.  But these aren't necessarily the same things as her classmates.

But my son is more alone.  He doesn't have any friends and he shows no interest at this point in making a friend.  And he spends his school days in a self-contained Special Education classroom.  Whenever someone tries to be his friend, he rebuffs the advances and continues to do his own thing.  Three boys were playing.  It was 2 against one, but it was a water gun fight and sometimes that's just the way it goes.  My son was having fun and was asking them to shoot him again.  So, I just sat back and watched.  The only reason he was playing with these boys is because they were shooting him with a water gun, something that intrigued him.  He wasn't doing anything to harm anyone -- just giving them an easy target.  Therefore, when I heard the words come out of this 5 year old's mouth, a barracuda (in my form) jumped back at him.

I informed the child who said this that he was being "mean" and I used the word "bully".  I also asked him how he would feel if someone said these things about him and reminded him of the "Golden Rule".  And, I informed his mother, as she wasn't there to witness what was said, who promised me she would talk with him about what happened and help to bring home the message.  But as I'm writing this a few days later, I'm still seething.  And I know this probably has happened before but I just didn't see it and that it's likely to happen again, even if it's not the same child.

You see, I know that they other kids make fun of my twins in their own ways.  This is what I'm afraid of.  This is what worries me when I send him to school every day.  This is what I fear is happening on the playground.  My daughter, however, has at least this one defender (and I'm confident there are a few more).  However, for my son, he doesn't see these behaviors as wrong......because I don't know if he even realizes that it's happening.  Because he is so much in his own world, I don't know if he will ever notice it.  He certainly has never told me anything about it.  But him not telling me doesn't mean he doesn't notice.  If he truly is oblivious, I have no cause to worry.....what he doesn't know or understand won't hurt him, just the people around him who love and care for him.  But if he does understand.....and doesn't know how to say anything or stand up for himself......that's the worry.

That's why I have entrenched myself as much as possible in the school.  I need to be able to see (without interfering when it's not necessary) what is happening to my children on a daily basis.  I need to be able to have conversations with their teachers and make decisions for my children until they prove to me that they can do this for themselves.

My son is Autistic.  He was initially diagnosed (at 30 months old) as Severe Classic Autism, but since then has learned many skills that make his current doctor question that diagnosis (she calls him a more severe PDD-NOS).  He only seeks input from his family and his teachers (once he feels comfortable with them -- it takes a while).  His behavior is like a 3 year old (even though he's 6.5 years old).  He is verbal, but I wouldn't call him conversational.  Since language emerged at all, he has always been very echolailic.  You usually have to ask him the same question five or six different times and in different ways before you can really trust the answer.  And sometimes, you need to check up on it.  He loves to repeat things that he's seen and is currently obsessed with street signs so he will constantly tell you what street he wants to be on.  He really is his own person and he does his own thing.  And he sticks out in any crowd that he is asked to join.

Bullying is, in my mind, a natural behavior.  By nature, we are pack animals, seeking out peers and doing our best to fit in.  And, just like with wolves (another pack animal), our nature is to seek out those that are weaker and try to keep them out in order to make the pack as strong as possible.  This doesn't end after adolescence....this continues our entire lives.  But as we grow, we understand to appreciate uniqueness.  We have to teach our children this as well.  In our efforts to put an end to bullying, we need to consider that we are asking our children to change a behavior that comes naturally.  That's what makes putting an end to bullying so difficult.  It can be done.....I truly believe that.  But I don't agree with others who say that we teach our children to bully -- they are programmed that way.  We have to teach them to CHANGE the program.

Things ARE getting better.  Kids are learning about the many others around them that are "differently abled" and are learning to be more patient and sympathetic.  But we still have a long way to go.

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My name is Ilene and I'm a happily married Stay At Home Mom raising 3 wonderful children.  My oldest son is 8 years old and is your typical 8 year old kid -- he loves Legos and playing video younger two are girl/boy twins, both on the Autism Spectrum (exactly where seems to be in contest at the moment).  They are 6.5 years old and between the 3 of them, they keep me on my toes!

I blog to share our stories at My Family's Experience With Autism.  I haven't had time lately to share much, but I invite you to come by and see who we are!

Thursday, July 18, 2013

Reverse Stranger Danger

I taught my kids all about stranger danger. I read the statistics and got the books, had the talks and showed them the movies. We talked about appropriate, inappropriate, personal, private, and when to run like hell.

It never, not in my wildest dreams, occurred to me that someday Wil would grow to be a six-foot seventeen-year-old, that others might perceive as "dangerous." He, most literally, could not, and would not, hurt a fly.

My husband says we were lulled into believing that "everyone" knows him in the neighborhood, and was understanding, patient, kind, and big-hearted. I would argue that 90% of them do know him, and are. The other 10% are not the opposite of understanding, patient, kind and big-hearted, they are simply yet-to-be-converted.

In the year-plus that we've allowed Wil to go to the two parks by our house unaccompanied, we've only had one phone call and one stop-by from a concerned friend/neighbor. The first was a woman that got our number, and called because she was a speech path that had connected the dots with what was going on with Wil, but wanted me to know that she had seen him try to take a small child's hand and walk them from where they were right in front of their parent, to a place away from the parent. She knew he intended no harm, but wanted me to talk to him about not doing that - and of course, I did.

The second time we heard that anything was less than hunky dory, someone pulled up to our house and said Wil had had a run in with older kids, and had resorted to swearing. I am sure he did. I am also sure that he is not the first older kid to tell another older kid, to go to hell. I do, however, appreciate that this language is not okay in a park/school setting with families and young children all around, and foul language never solved anything.

When Wil is at the park, I am never far from home, and am usually at home. My cell phone is on. My radar is up. I am in the starting blocks at all times, hyper aware and ready to respond to anything at any moment. I came home from being gone briefly, and there were two messages. One from someone really wound up and one from someone that sounded concerned, but rational. I started by returning the call of the rational one. She is a daycare provider, has seen Wil a lot at the park with the kids she watches, and understands him. She was calling because the second caller had cornered her, trying to figure out who Wil is, because she was concerned he was riding his bike by her house frequently (she lives right by the school) and "staring" at her two little girls.

There isn't a doubt in my mind he is "guilty" of both.

The calm-headed daycare provider urged her to call me, rather than the police. She knew we could work it out, and that involving the police was unnecessary.

When I did reach the woman, I was able to tell her that I genuinely understood her concerns, and that I wouldn't like a "man" staring at my little girls, either, as he rode around on his bike. Truly, I do get it. If I were her, I would probably have done the same thing - figured out who this "character" was by asking around, and then work to get them to go away. I did tell her that Wil is on the spectrum and would never hurt her girls (or anyone), and she did come around, especially after I promised to talk to him, and have him ride right on by, rather than lingering there, watching what was going on in their front yard, which is apparently, highly fascinating.

Nonetheless, the whole thing has rattled me. Am I to never let him out of my sight? Am I to dog his every step, overhear and monitor his ever word?  Buffer him from the world, and the world from him, 24/7 for the rest of my life?

After going into a full-blown tailspin after the phone conversations, talking it all over with my husband, and having a beer, I got the mail. In it was a thank you note from one of Wil's assistants that had just graduated. He went on and on about what a privilege it was for him to have spent time with Wil over the last year, and thanking us for that opportunity. There was also a birthday card from a couple with a dog that Wil loves hanging out with at the dog park, they had given him a gift certificate for his favorite frozen yogurt place, and the card was heavily punctuated with exclamation marks and kind words. About an hour later I opened an e-mail from my brother telling us we've done an amazing job of enlightening other people's lives and perspectives about what Wil's gifts are - his contributions on this planet.

Sometimes I just want to be done enlightening and broadening perspectives, but I guess I am not. I guess that's part of the gig I signed up for on some cosmic level. I guess while others fight sexism, and racism, and other isms, I will fight intellectualism. I will continue to do what I can to broaden our understanding of different abilities, different behaviors, differences which are just that - not wrong or right, just differences from what is expected, from what is comfortable, and from what we might consider normal.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at 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.

Sunday, July 14, 2013

Assessment (My Listen To Your Mother Video!)

This year, on Mother's Day, I had the overwhelming privilege to stand on a stage and read a piece as part of Listen to Your Mother. Being a part of the 2013 San Francisco cast was amazing. I've been waiting (im)patiently to be able to share the piece here, and now I can! This video is me, reading my piece, "Assessment."

I encourage you to listen to all the other videos as well. Although most are not about special needs parenting, I had something to learn from all of them. I'm sure you will too.

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Jennifer Bush is a blogger, writer, and now a speaker as well! She blogs about life, love, and early intervention at Anybody Want A Peanut?

Friday, July 12, 2013

Wheelchairs and steps are not a match made in heaven

Last summer vacation we enrolled our older daughter in a playground camp for a few weeks in the summer.  It was very unstructured and I realized early on it wasn't a great fit for my daughter so we knew we would look for a different program this summer.  What we wanted for this summer was something different, something that both girls could attend together because both expressed that desire.

Finding a camp that is a good fit for both of them can be a bit of a tall order considering my older daughter is typically developing and my younger daughter requires a one-on-one assistant.  We looked around and found a couple options that would work and settled on a week session at our church Vacation Bible School (VBS).  We picked this for several reasons, with the most important being Emma's most favorite place in the world is Church and we thought she would really love all the singing and activities at VBS.  We were right - she loved every minute of the week!  Even if she refused to participate in the crafts so she could just look at all the kids.  My girl is nothing if not an avid child watcher.

We signed the girls up and I mentioned on the form that I would attend VBS as Emma's +1 thinking that would be the bulk of the accommodations we would need.  I intended to call the coordinator of the program to see if there was anything else I should do so Emma could fully participate with the other children, but, unfortunately never actually got around to it.  Yes, she knows Emma and knows me and I didn't think it would be a problem but still thought it would be nice to reach out with a call.  She even called me prior to the start to discuss that the location has a lot of stairs and isn't easily wheelchair accessible.  Oops!  I had no idea our parish hall had a 2nd floor and we would use both the 1st and 2nd floors for VBS.

Unfortunately insurance appeals and IEPs are taking up all my free brain power lately and I completely forgot to return her call and that is not like me at all.  It wasn't my most shining moment, but when we showed up for the first day everyone was very excited that Emma could join in VBS and we figured out a way to make it work for this year.

But....I don't think my back would sign up for another year of VBS with the current set-up!  I mentioned that to Sister and told her that I think we'll sign up next year with a different denomination church up the road that has an elevator.  I know they are able to accommodate Emma because we talked to them at length about sending her to pre-school there.  She took this to heart and the next day a couple of people told me, including Sister, that she is looking at options for next year so Emma can attend again.  I offered to help figure it out but I think she has some concrete ideas in mind and just needs to speak with others to get approval.  I'm not sure what we will come up with but I'm happy to see that our Church community considers Emma an important part of our parish and is willing to take the initiative to look outside the box for ways to include her.  It definitely makes my back ache a bit less tonight as I think about it.

I am hopeful that next year at VBS will be even better than this year!

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Kristina loves drinking coffee, family time and documenting her life - not necessarily in that order.  She is the mother of two charming daughters and works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in 2010 and is an advocate for disability rights and inclusion education.  You can read more at her blog

Thursday, July 11, 2013

School Haze

A couple of weeks ago my high school graduating class celebrated its 30th reunion.  I didn’t go for a variety of reasons, but on the top of the list was I didn’t want to make small talk that didn’t include my seriously demented mother or my twin girls, one of whom is terminally ill.  Of a class of 500+ students, it’s interesting to me who I remember and sadly, the people I most remember are the ones who often ostracized me:  the awkward boy I had a crush on in 8th grade, the cheerleaders and gymnasts, the basketball players and golfers. There were a lot of really funny, talented and nice people who went to my school, but I mostly remember the ones who were catty and cruel.  All the predictable cliques that come from attending a large suburban high school in the early 1980s were present in my school and with it all the social angst and humorous anecdotes. 

On the pictures that have been posted on Facebook of the reunion, there are some familiar and welcome faces. People who I have fond memories of but haven’t thought about in a while.  But there were also faces of people who reminded me of the social awkwardness and desperation for popularity and inclusion that is infused in middle and high school interactions.  I saw plenty of faces of women who as younger girls would talk with me on Sunday at church but wouldn’t acknowledge me in the halls during the week at school. Seeing their faces again throws me back to being fourteen with massive acne and a giant pit in my stomach for not being cute enough, peppy or preppy enough, funny enough.

As I contemplated my own reactions to high school, 30 years out, I wondered who I may have unintentionally tormented or isolated.  I noticed that not a lot of the students of color or the openly (or not) gay students seemed to be present at the reunion.  I also started thinking about all the kids who were relegated to the special education classes off in some remote hall where the auto shop and technical school flunkies resided.  Did any of those former students also feel marginalized during high school? The thought of that “special education” high school ward haunts me when I think of my own child in the 21st century.  If my girls’ school didn’t have a commitment to diversity, there’s a good chance she would be excluded from her peers even more than she already is based on her physical limitations.  It is unlikely that my one child will live long enough to enter high school, but if she does, I have no doubt that there will be some of her peers who will be cruel to her and her twin sister for being “different.” 

Last month I spoke with a group of moms who have children with Down Syndrome, and one of the moms was horrified of thinking of how her younger self tormented a local kid with DS when she was a that she has a child with Down Syndrome, it makes her cringe. We can make excuses that our younger selves didn’t know better but to call someone who was different a “retard” or “queer” and not include them.  There wasn’t language about bullying or cultural inclusion; we were modeling what the adults around us tolerated and condoned.

Which is why I love, love, love the recent story of the kid in Canada who made headlines when he was physically separated from his classmates in the school picture.  The whole incident smacks of neglect, not intentional malicious, but laziness and thoughtlessness on the photographer’s and teacher’s part.  The parents advocated, the situation went viral, and change took place. It was little baby steps of change, but the kid was visually included with his classmates.  As a parent of a physically challenged kid, I welcome such stories because such acts of advocacy are good not only for our kids but for the larger public discussion of what it means to be different in a culture that wants everyone to behave and look the same.

When Kirsten isn’t on summer vacation with her lovely 7-year old twin girls, she is a professor of Communication Studies at the State University of New York.

The appointment

I have many appointments.  Many many many appointments.  Sometimes I feel like if I want to spend any quality time with anyone in the family I need to pencil them in my book.  You know how it is.

Some appointments are good, some are bad, and some just are.  But yesterday was a big one.  It was equipment clinic.

This appointment marked a new stop in my journey with Cary.  It is like a transition and I am not quite sure how I feel about it.

It is a transition from items I have adapted by hand like my baby stroller, a exersaucer, and an infant chair to a adaptive stroller, a stander, braces for little legs that cannot support themselves fully, and a modified chair.  They come with names.  Rifton, buffalo, penguins.  Friendly names.  But they scream to me your child is different.  Your child needs extra help.

Don't get me wrong, I know she needs help.  I know these things are going to give her the support she needs.   Everyday items and toys just don't work for her.  I have made them work.  But now it is time to give her what she needs to be successful.

So soon these new items will come home and we will start a new transition in her life.  A transition that for better or worse is here to stay.  So I will learn.  Learn to adapt and embrace the change.  Learn to keep moving forward and enjoy the journey.

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Amy Fields is a mom, pet lover, and an advocate for her special children.  You can find her over at Many Kinds of Families.  

Wednesday, July 10, 2013

Thanks, Stranger

I'm taking a writing class online, and this week we had an assignment to write a thank you note to a stranger. Easy.

Dear Little Girl I Never Met,

I wonder if you even remember the day when you were eating lunch in the cafeteria and your teacher asked  you if you would show around a dad and his little boy, because the little boy was feeling quite nervous about going to your school next year. I hear it was no big deal to you, but you should know how big a deal it was to us. Our boy has changed schools three times already as he looks to start fourth grade. He is sweet and kind and bright and cute, but his autism sometimes keeps people from seeing that, and school has come to represent a kind of torture for him.

I couldn't be on that tour because of work, but when I called my husband afterward, I asked him to rate on a scale of one to ten how he felt about our decision to enroll our son. Before he would answer my question, he just had to tell me about you. He said you didn't just tour Roo around, but that you introduced him to other kids, you encouraged him, and you were just naturally friendly, undaunted by any differences you might have noticed. My husband said, yes, the school looked clean and safe, the teachers were friendly, the curriculum looked fine, but he said he'd have to give the school a fourteen, because you embody everything we hope to find in a school. I am sure you have wonderful parents, but our fiercest hope is that your school culture nurtured your ease and graciousness.

That night when I asked my son how he liked his new school, he looked me in the eye, and he said, "Mom, I made a friend there!" And I've been wanting to thank you ever since.

Sincerely, Rooster's Mama

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Rooster's Mom is a parent, educator, wife, mom, and writer. She blogs at

Friday, July 5, 2013

Stop right now!

For this month's post I was going to write about my son's first plane journey in over ten years. I was going to tell you how successful our adventure was. I wanted to wax lyrical over the fact that my autistic son coped so well with the many changes and variations that he encountered over the four day period. In fact, I also wanted to tell you about how I just went with the flow and provided him with the love, support and guidance that he required during our adventure. I wanted to share how I felt when we went to board the plane for our flight home.... how my precious boy became stressed and powered his way up the stairs, pushing his way past the other passengers to escape being surrounded by people. I wished to describe the emotions that I felt when each one of those passengers and the flight attendants were so kind and understanding to me and my boy.

However, as I settled my son into his plane seat and then plonked myself next to him, my thoughts flashed to the various comments and blog posts that I have been reading in the social media. The words that are being used day in, day out..... by the many adults in the autism community (and yes, some of those adults are autistic). They tell me that I must accept and embrace my son's autism. They yell that I shouldn't be looking for a cure. They proclaim their disgust at parents who want to try everything possible in order for their kids to live a better life. They cry that they would never want to take away their child's autism.

Well, I say to you.... Stop right now! 

Don't stand in judgement of my choices. Don't tell me that I am a bad mother because I am intervening with my son's autism. You do not speak for my son. You do not speak for me. My boy finds it impossible to communicate. He has had years of therapy and he still can't construct a sentence on any AAC device. He is unable to go to a public toilet unattended. He can't go to a restaurant and independently choose his food and pay for it. Life is difficult for him at the best of times. 

Do you even know how heart-sore I feel because my child is totally dependent on me and will remain so for the rest of his life? Do you realise that I adore my child with all of my being and that I would go to the end of the earth for him? Do you think about the possibility that his autism is not the autism that you know? Do you even have an answer for what is going to happen to him when I die? Do you understand that I accept my son for who he is, however, I also want him to have an easier life without restrictions? Yet, you still judge!

Therefore, I also say this.... 

I will listen to you and take what information is helpful for us... BUT, you do not speak for my son or for me.

So, stop right now!

Stop judging parents who are finding autism to be hard. Stop judging parents for choosing A, B or C. The road that we are on is a very long journey and we all reach our own brand of acceptance in our own time. Have respect for us. Be open minded and understand that we all need support regardless of what you think is right or wrong. Stop telling us what we should be or shouldn't be doing. 

Stop right now ~ it is not YOUR journey!

I remain hopeful that one day we will come together as a community regardless of our beliefs.

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Di has been an autism parent for over 14 years. She doesn't generally open her mouth and speak her mind (on a public forum!!), however, the closer she gets to 50, the less she cares!! ;)
Di blogs over at Bright Side of Life, where she is a lot less opinionated!

Monday, July 1, 2013

“What Kind of Sick, Mommy?” Explaining the Diagnosis…

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“Hospital sick honey.”  That was my response when my child was old enough to understand that she had kidney disease.
It all started in a conversation we were having at a restaurant with my daughter Stephanie’s best friend Kym and her mom Bev.  OF COURSE this would happen in a public place!  Stephanie had always had the same renal diet (the most medically restricted) her entire life but she suddenly started questioning.
“Why can’t I have ketchup?”
“Because it has salt.”
“Why can’t I have salt?”
“Because it will make you sick.”
“What kind of sick Mommy?”
“Hospital sick honey.”
So I told her we’d talk more when we got home.  I had publications from various national kidney organizations that explained renal disease to kids that we read.  I also later made her aware of treatment options such as dialysis and transplant should she ever need them.  I asked her if she had any questions.  I made it clear to her that this shouldn’t change what she could do, she’d just have to work around it.
“The only disability in life is a bad attitude” – Scott Hamilton
That one was actually the easier explanation. 
About 2 years later, AGAIN in a public place (where else), Stephanie purposefully flapped her hands quickly in front of her face, something she usually couldn’t control, and asked “Mommy, what is this?” 
“That’s called stimming”  I answered, not sure if she merely wanted me to label it or explain what it was.
“No, Mommy, what IS it?”
Ok, so it’s time.  “It’s something some kids may do when they’re over excited and helps them calm down.  Have you ever heard of autism?”
“Autism Spectrum Disorder” she replied matter-of-factly as I almost fell off my chair.  Kids know way more than you think they do.
So once again, I told her we could talk more later at home.  I started with children’s books that explained autism and saved a few on inspirational people for when she was older.  I explained that she thinks differently, not better or worse, just differently.  I also explained that’s why she could memorize things she liked such as evolutions and attacks of all 150 Pokemon, and of course dog breeds.  And I thought that’s why she could play any instrument by ear, even switching keys without hitting a wrong note.
It seems like the physical or visible disabilities are easier to explain and to understand for children and even adults.  Although we don’t advertise, nor hide, when some people found out she had kidney disease it was like “poor thing” but with autism they acted like they were getting out the garlic against a vampire – lots of avoidance behavior.
I was careful not to say anything in front of her, even at home, that she wasn’t ready to understand.  Even when I had to once carry her out of Walmart screaming & kicking & hitting because I wouldn’t let her play on a display swingset so she dropped to the floor, I said to the cashier on the way out (so they wouldn’t think I was kidnapping her or something) “She has a-u-t-i-s-m” spelling it so she wouldn’t hear it.  Now that she knows, we’re open about it and she can even tell the degree with other children “he has just a little autism, or she has a lot of autism” or later she could identify other disabilities such as Tourette’s or cerebral palsy, though I had to teach her to say it privately so as not to upset the other child just in case.  I think this helps her understand herself.
You as parents will know when your child is ready.  It’s almost like the sex talk.  You have to figure out exactly what they’re asking and how much they need to know.  You’ll be able to figure it out by the questions your child asks.

Remain hopeful,



Many disability specific organizations have materials for children.  For a general searchable listing, check out 

For school age children, Child’s Work/Child’s Play has a series “Taking [disability name] to School”

Kid’s Health Website has information on specific conditions at



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 or FB  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 or FB