Thursday, November 28, 2013

Why Not This Life?

As the parent of a child diagnosed with Prader Willi Syndrome, my life is a difficult one.

Much of my time is spent accompanying my child and supporting him through hospital stays, specialist visits and complex medical procedures.

Often this hectic lifestyle causes me to reflect upon my life.

It has made me question....why?

Why did this happen to Nicholas?

Why did this happen to me?

At times, it feels like life itself has become a form of punishment.

Lately however, my mind is tired of my complaints and constant questioning.

Perhaps it is this holiday season of thankfulness that has warmed my Grinch-like heart.

This week, when I questioned once again...why, I was answered quite suddenly by a stern voice inside my mind who asked...

Why not?

I must admit, for a moment I was stunned, frozen by the impact of these two simple words.

The persistent voice continued to address me.

Why not care for this beautiful child?

Why not embrace and celebrate his existence?

Why not explore the meaning of his life?

Why not teach others to embrace him and see the spirit that lies beneath?

Certainly there are worse fates, what if I had nothing or no one to worry about?

My mind could be filled with trivial thoughts and trivial things.

My days could be filled with meaningless inaction.

What if instead of caring for another, I was caring for only my empty self.

If not this life, then whose life would I want and how long would I be happy?

Now perhaps by asking these questions, I am really just going insane by talking to myself.

Perhaps I am in the process of slowly losing my mind.

But I must admit, these questions have got me thinking about my life.

I am thinking about a life that is devoted to caring for another, a silent soulful other who possess a pure heart and an innocent spirit. He embodies an unconditional love for others and has much to teach the world.

Perhaps the question is not why am I being punished, but instead, why am I so blessed?

How can I improve the care this child deserves and help the world to see him better?

Perhaps I have a lot to be thankful for?

Wishing you all a very Happy Thanksgiving.

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Lisa Peters writes more about family life at To learn more about Prader-Willi Syndrome please visit our national organization at

Thank you for reading.

Monday, November 25, 2013

The Mother and Person I Became

A few minutes after my son was born, I held him in my arms I looked up at my beloved and didn't have the words to express what I was feeling. He made me a mother.
It was a year before he'd be diagnosed with a vision disorder that caused delays. It would be another two before his sister would join us and bring a surprise inside her body that she would share with her brother.
Motherhood was an adjustment, as I'm sure you know. I'd like to think I'd handled it pretty well in those early days, before a time I call The Fog, when we'd learn about a life-threatening chronic illness. Two years before I became a mother I'd begun freelancing, anticipating staying home with a baby and worked nearly full-time until he was born. I'd nursed exclusively, he was a good sleeper (undiagnosed kidney disease anyone?) and I felt competent. We did okay, the two of us.
Fast forward a couple of years and we had two sick kids with multiple special needs to take care of that resulted in an unbelievable amount of appointments for the next year because blood pressure stabilization and up to 13 (yes, thirteen) therapy visits a week.
It was a terrible time of adjustment for me but as I just put one foot in front of another a transformation happened. As I was caring for them and their complicated needs I started to change.
I became an advocate.
A caregiver, tear wiper.
I became a story teller, a schedule keeper.
A comforter and soul protector.
I became a researcher and juggler. A medical aide and fighter.
Pill dispenser. A shot giver.
A volunteer, a speaker.
I became fearless and fearful.
I became a better daughter, sister, mother. A better friend.
I became more grateful.
I became a better person.
I became the mother I am today.
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Julia Roberts recently shut down her personal blog Kidneys and Eyes after 9 years and focuses all of her blogging time on a community she co-founded, Support for Special Needs. She loves long walks on the beach, Diet Coke, and naps. Married to Julian for nearly 20 years, they laugh at their life a lot. 

Tuesday, November 19, 2013

Comparisons......Just Can't Stop Myself

I have a set of boy/girl twins on the spectrum.  They will be 7 in a couple of months and they were first identified when they were 26 months old.  They always carried the same diagnoses.....they were both initially diagnosed with "Severe Autism".  Their current doctor believes a more accurate categorizations for them both is now "PDD-NOS" (as they have learned many skills since their original assessments).  They both have ADHD and are classified as "Hyperlexic".

I always thought that, since my twins are not identical (hey, they're a boy and a girl.....they can't be identical), I wouldn't fall into the trap that so many parents of multiples easily find themselves ensnared within.  The trap of comparing the two.  The trap of measuring one's successes or lack of success with the other.  But I still do fall into that trap from time to time.  And what always seems to bring it on is their diagnoses.

You see, you would think that, with identical diagnoses, they would have things in common.  You would think that I could take what I learn from one and apply it to the other.  At least that's what I thought.  But, in practice, that's just not the way it goes.  They are constant reminders to me that each case of Autism is truly unique, just as each child is unique.

This is something I was reminded of, yet again, last week during parent / teacher conferences.  Both Music Man and Ballerina attend the same school, but Ballerina is in a General Education classroom (with assistance from paraeducators) whereas Music Man is in a Special Education classroom.  I felt both conferences went well without any surprises.  But we still see the many areas where they differ from one another.

With Ballerina, we spoke a lot about her developing friendships, especially with a particular classmate.  She is now sitting with this other student and they spend time together on the playground and when they are given freedom of selection in their partners.  This other parent and I are even trying to arrange a mutually convenient time for the girls to get together for a playdate.

For Music Man, on the other hand, he has NO desire to be interacting with the other students in the classroom.  He will do so when he has no other choice or when the activity is of his own design.  For example, he will read a story to his classmates and they will act it out (as I mentioned, he's hyperlexic and his reading decoding ability is probably near high-school level).

This is something that I struggle with.  Big Brother, my typically developing 3rd grader, is a very social creature.  He likes to spend time with his friends.  Ballerina is starting to engage in similar behavior.  These are GOOD things!  These are helping them both develop skills that they will need as they grow.  But Music Man would prefer to do anything BUT spend time with his peers.  He would rather read or play on the computer or with his phone.  Or watch a movie or a cooking show off Food Network (a habit he's picked up from me).  And he is a very determined can't MAKE him do things if he doesn't want to.  The most I can do is to put him in situations where he has to encounter another human being.  But even then, he will walk into a corner and turn away so he can do his own thing.  Even in dance class, he would prefer to stand behind a wall (and do the actions directed by the teacher), as long as he doesn't have to be with the group.

But not her.  She is starting to want to be with others.  She recently discovered dolls and is re-enacting parts of her school days with the 10 or so Barbie-style dolls we have for her.  She is going to start playing soccer in the spring like several of her schoolmates.  For the first time, SHE is asking to participate in these types of activities.  But Music Man would prefer to stay home and play on the computer.

I realize that this is not 100% a bad thing.  There are many opportunities for people who would like to spend their time sitting in front of a computer screen.  And there are times that we realize how much he knows how to do.  But I do worry about him much of the time.  And I wonder why, given that they have so much in common, he is so unlike his sister.

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My name is Ilene and I'm a happily married SAHM to 3 amazing and AWEsome children.  My eldest is a typically developing 8 year old and I have a set of fraternal girl/boy 6.5 year old twins who were both diagnosed with Autism when they were 26 months old.

Blogging is something I started doing not long after we learned they were on the spectrum.  I started my own blog and I call it my "publicly available online journal".  I've used it to cope and to educate.  I am also the administrator to the Facebook page We Care About Someone With Autism, which I started about 2.75 years ago.  I haven't had much time to blog lately, which I regret.

Monday, November 18, 2013

I've Come to Believe

I was asked to write a "legacy letter/ethical will" as part of a photography project I participated in recently. Here is my "letter:"

Through raising a special-needs child, I've come to believe that I am not the teacher; I am the student. My child is here to teach me. He came with a contract for very specific work on this planet, and Job #1 was to teach me patience, and that I was not in charge, so the sooner I let go of any assumptions to the contrary, the better.

They say the difference between religion and spirituality is that religion is for people afraid of hell, and spirituality is for those that have been there. Raising a child with special needs will take you to “hell,” but that is really the whole idea. Some of us don’t learn with a subtle approach, we need to be forced to break from old patterns and beliefs in order that we may ascend if not to “heaven,” then at least to a “place” where there is peace in our soul.

I have come to believe that the “epidemic” of autism is a spiritual matter. With one in 50 boys being diagnosed with autism spectrum disorder, and one in 88 children, the world, as we know it, will cease to exist.

And that’s a good thing.

Only when we have vast numbers of those that think differently, act differently, socialize differently, and process information differently, will we have a world that operates differently.

I once heard an interview with Barbara Bush, after her husband had left the White House. The interviewer asked her if in all her many years of marriage, had she ever considered divorce? She answered, “I never considered divorce, but I often thought of murder.”

Raising a special needs child will put untold stress and strain on a marriage. I have come to believe that those that often think of murder, but do not consider divorce, are the ones that come through on the other side, and quite possibly, eventually enjoy a rich and happy marriage because they’ve been through a war together. I have come to believe there is something to be said for those that just “gut it out,” and are too stubborn to quit.

I have come to believe that there are those that “get it,” and those that don’t, and you will start off with one circle of friends, and end up with another. You will not be sorry. There was nothing wrong with the first set, but they got on one train, and you got on another. You can’t look at this as a loss, you can’t look at this as a contest, you can only look at this as a fact: you had one plan, life handed you another. Their trains took them to their intended destination, and yours took you to one you didn’t want, didn’t plan for, occasionally resent, but are ever-altered for having been sent there.

I have come to believe that your special-needs child will make you do things you don’t want to do, learn things you don’t want to learn, be someone you didn’t think you wanted to be – different. But you are different. That was why you got the child you got. It’s not an accident, it’s not a mistake, it’s a sacred contract written in the stars that you agreed to on a cosmic level, because you were ready to evolve from a soul that was concerned for self, to a soul that was concerned for ALL.

If I had to boil down what I've come to believe most through the journey of raising a special-needs child, is that we are ONE. There is no "us" or "them," we are all threads in the greater tapestry, and all of our thoughts, words and actions affect the WHOLE.

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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.

Thursday, November 14, 2013

More than Existing

On Monday, November 11, Suzanne Wright published a piece called "Autism Speaks to Washington—A Call for Action." In it, the Autism Speaks co-founder calls for a national plan to address this "emergency." "We are asking our leaders," she says, "to respond to autism with the urgency it deserves—NOW."

Many in the autism community are already strongly against Autism Speaks, and this piece did nothing to improve that reputation. Facebook lit up with angry remarks and several prominent bloggers in the community came out agains the piece. Even John Elder Robison resigned his positions at the organization.

AS has long been known to paint a bleak picture of autism, and the organization's goals tend to focus on finding a cure for autism. (I won't debate the need for a cure, for it is a long and heated road to travel.)

I have to be honest. At first I wasn't all that upset about the piece. First and foremost, Autism Speaks is a fundraising organization, and the way to raise money is to pull at heartstrings or to create a sense of panic. And so I assumed that the piece was just another way to raise money. I brushed it off.

But then I read it again.

And I read this line: "These families are not living. They are existing. Breathing—yes. Eating—yes. Sleeping—maybe...."

And that line, that we are not living but only existing, made me realize what all the fuss is about. Those are deeply hurtful words. Words that say that autistic people merely exist. Words that tell me that I can never be happy as long as my child has autism. And that is unfair and offensive to autistic people and those who love them.

Does the end, raising more money, justify the means, especially if the means alienates the very group of people you are purportedly trying to help?


I've had a tough road with my son. He is the kid Ms. Wright describes in her piece. He often doesn't sleep. He bites people. He's been failed by our school system.

But he is my son. I love him. And if I am unhappy about our situation that is on me. That is not his fault. And if you make it his fault, if you tell me that I cannot be happy as long as he is my son, that we can only merely exist in this life, that leads to very dangerous thinking.

That leads to people who think it is okay to bully people with disabilities.
That leads to school systems who think it is okay to let our kids fail as long as they meet their bottom line.
That leads to media portrayals of autistic people as violent.
That leads to parents who act out of desperation.

So yes, we do need a national plan. But it has to start with hope. It has to start with the assumption that our autistic friends and family members are intelligent people with inherent value to their lives. Let's talk about education. Let's talk about accommodation. Let's even talk about the causes of autism.

But don't tell me I can't be happy. Because I'm not listening.
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Jen also writes on her personal blog, Anybody Want A Peanut?

Monday, November 11, 2013

The awakening

" The child passes little by little from the unconscious to the conscious, treading always in the paths of joy and love" -Maria Montessori

I love the stories and folk tales from different cultures.  Many speak of a time when people were asleep and enchanted and mythical creatures roamed.  When the time came we awakened.  We had always existed and would continue to exist, but our bodies and minds lay dormant.

When we brought our daughter home I felt like she dwelled in this dream time place.  She was happy and content to be in the embryonic state and to let us live life around her.  She would sit for hours if you would let her in a patch of sunshine watching the world go by.  Content to be a bystander. Content to be dormant.

Many special needs parents have children that dwell in the dream lands.  We do anything we can to coax, guide, and flat out drag them kicking and screaming into humanity.  We feel that they are missing so much, the joys and try to force them into something they are not ready for.  I tried to force my daughter out so many times that she began to flee to the dream land.  She fled from everything I tried to do and hid further and further in the shadows.

So I stopped and stepped back.  It was hard for me to do.  I am not by nature a patient person.  But I wanted Cary Lynn to come out on her own terms.  And she did.

I can't tell you exactly when it started happening.  Was it when she realized she could push a switch and get her needs met?  Was it when she understood that by moving her left hand at a certain angle that she could hit shiny red bells?
Was it when she sat in her chair and signed music and I sang to her and then she signed more?  Or was it when her vision teacher brought over all sorts of new playthings that Cary has now spent several hours of untiring exploration?
I don't know when it exactly happened or how, I just know that it has.  My daughter is awake.  She is interacting with her world.  Movements that were jerky or reflexy are becoming purposeful.  She is exploring, thinking, and laughing.

We are starting a new path and beginning a new journey.  I have no idea where we will go, but I am excited and ready for the adventure.   My daughter has left the dream land.  And life will never be the same.

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I am an adoptive mom, advocate, and teacher.  You can find me at my blog Many Kinds of Families

Tuesday, November 5, 2013

I need a drink!

My boy picks his nails. It is not the greatest habit in the world, however, it's what he does and I go with it.

This year he discovered that he could pick his lip! Now this is a very different story. You see, once he has worried away a little bit of skin then that area becomes even more bothersome to him. He will continue to pick his lip in order to remove further skin and hence starts the cycle leading to disaster. I realise that this doesn't sound very pretty. But wait, it gets worse. He then starts to use his teeth.

I don't intend to give you all the gory details and show you scary pictures! It is extremely painful and seriously upsetting. For him and me.

My son is autistic/has autism. He doesn't understand that the more he picks and chews, the worse the situation becomes. This has happened four times this year.... oh, and throw in some mouth ulcers as well. The only reason he ends up in such a mess is all because of a little bit of loose skin on his lip. We try to remain vigilant and ensure that his lips remain in tip top condition, however, in the blink of an eye this can change.

This past weekend has involved keeping him under our watchful eye for as much as possible. On the rare occasion that he has been left, we find that he has attacked his lip again and we have a bloody mess to try and sort out.

There is light that comes out of the darkness.

My boy has remained stoic throughout the whole experience. The pain that he has suffered is unimaginable, however, he has never cried, fussed or became anxious. I rushed him off to our Doctor only to find a stranger on duty. Not only did my boy cope with a new face but he also allowed him to place a tongue depressor into his mouth ~ a brand new experience!

I have had to pump my child full of medication (which I hate doing) and he has just taken it on the chin and opened that mouth for me, regardless of the fact that the taste is foul. I have also been cleaning his teeth and gums with a warm salty solution.. and I am still shaking my head over the ease at which he allows me to do this. His resilience has been amazing.

On Saturday night I made the decision that he should sleep in my bed *with me*. A new bed and sharing with another person ~ talk about a huge curve-ball. Our first night was a bit topsy turvy, although it makes me smile to remember being woken up by my arm being squeezed (even though it was 3am!). Our second night was much better and I learned what I had always suspected, he sleeps with a pillow on his head all night!

As I write this, my boy's lip is slowly healing and my relief is immeasurable.

It has been a tough time but one that has been handled with quiet dignity.... and I am not talking about me!

Onward and upward.

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Di is the mum of two teenage boys and they all live in sunny South Africa. Di waffles on about autism, RDI and other stuff over at The Bright Side of Life

Friday, November 1, 2013

The Hardest Choice of All: Out-of-Home Placement

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I think besides actual life-and-death situations, that the hardest choice for caregivers of children with special needs of any age is out-of-home placement.  I want to preface this by saying in general I am an inclusion advocate and that out-of-home placement is usually the last resort.  This is also an individual decision based on family circumstances.  I have heard from parents of older children that they are fearful of the physical strength of the child, or perhaps size is an issue for parents who could no longer lift the child daily for personal care.  I have also heard from parents of children with behavioral issues that they are concerned the child with hurt themselves, or someone else.  I’ve also been contacted by families who are worried about the effect on siblings.
    In most cases, community based supports and services lead to success.  Also it doesn’t have to be “zero to 60” because there are a variety of placement options that families may not know about.  For example, there may be therapeutic day programs that have the structure that the child needs and then they can return home, just like school, and parents can also get training.  It may be something as simple has home modifications for lifts, accessible bathrooms, modified vans, etc. which allows the individual to remain at home.  There are even interim behavioral health programs for students who may have been hospitalized for mental illness and aren’t yet ready to return to school, so this is a good in-between phase.  Good discharge planning can avoid readmission and keep children at home.  If residential placement is needed for a child to receive a free, appropriate public education (FAPE), the placement is at the district’s expense.  For children of transition age (14 and above), Centers for Independent Living (CILs) have “nursing home diversion” programs, because sadly children can even end up in a nursing home and Medicaid which pays for long-term care has an institutional bias, even though it’s less expensive to provide home care for individuals who need around-the-clock-care.  CILs will help with activities of daily living (ADLs) and independent living (IL) skills to maximize independence. 

    The American Academy of Pediatrics is coming out with a paper on out-of-home placement which I reviewed.  I found that pediatricians agree that this is done in rare cases as a last option for desperate families. The pediatricians are non-judgmental and understand the challenges for families.  Lack of community based supports and services are the single largest factor in institutional placement.  Our Medical Home project found that the most requested information was linkage to community supports.  More people enter institutional care due to caregiver burnout rather than deterioration of their condition.  Most children who require help with ADLs and even skilled nursing care, can live with their families, with appropriate supports.  The disability community, and evidence-based practices, argue for the opportunity with non-disabled peers in the least restrictive environment (LRE) to the maximum extent possible.  Listed below are resources for families to help support their child with special needs.

Centers for Independent Living

 Exceptional Parent article on closing developmental disability centers

Family-to-Family Health Information Centers

Governor’s Councils on Developmental Disabilities

National Alliance on Mental Illness (classes/support)

Parent Training and Information Centers (education advocacy)

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 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