Saturday, December 28, 2013

I Gave my Love...a Colander?

My dear husband is not exactly the best gift-giver. So,weeks before Christmas, I usually start hinting to him about potential gift ideas for me. I'll say things like....

"Gee Hon, did you see the lovely earrings they have at the jewelry store in the mall."


"There are so many new books at Barnes and Noble that I'd just love to read."

But over the years, I have learned that this tactic is not an effective one.

I struggled for a long time trying to understand my husband's lack of ability to understand "hints". Was he just being stubborn? Were the items too expensive? Did he need to have his hearing checked?

It wasn't until my son, Weston was diagnosed with ADHD, that I finally learned how to understand Pete.

I am not a doctor but after listening intently to our pediatrician discuss the intricacies of this diagnosis and after researching every book and professional article ever written on the subject, I am now convinced that like my son Weston, my husband, Pete, also suffers from ADHD.

His lack of ability to understand hints and innuendo, his need for constant movement and activity, his love of video and computer games, his impatience, anxiety and impulsivity, all these symptoms now make perfect sense to me, thanks to my eldest son.

It wasn't until last Christmas that I received an official confirmation.

There under the Christmas tree was a large box wrapped with beautiful holiday paper. It was addressed to me. I was stunned, what could it be, I thought to myself? I was so happy that my husband had finally thought of me. He had actually put a lot of effort into wrapping the present, as gifts from my husband usually come in plain white envelopes or wrapped in plastic shopping bags.

Was it a music box, maybe a snow globe, a lovely figurine?

"Nope," my husband said. I would just have to wait.

Christmas morning finally arrived and I opened the present quickly, anxious to see what my unusually thoughtful husband had so carefully selected for me. I ripped off the paper, tore open the box and starred at my present in disbelief as there inside the box sat this....

an ordinary colander

I looked curiously at my husband. Was this a joke? Was my real present cleverly concealed underneath this kitchen utensil? No, nothing underneath....

My husband looked at me and smiled, quite pleased with his purchase, certain that I was going to love it. Now I must admit, it IS the most beautiful colander I have ever seen. It is shiny and metallic, almost too expensive-looking for draining pasta or washing lettuce. It actually sparkles under the light.

"I know you needed one," Pete said, "and this one just looked so pretty. When I saw it, I thought of you."

It was then that I realized how fortunate I truly am to have this wonderful man in my life.
He does not place value on material things. He does not try to impress others. He sees the beauty in things that may appear ordinary to others. But most importantly, he knows just what I need. Whether it is a long silent hug, some straight forward advice or just a single comment that breaks my tense mood and makes me laugh.
By embracing the beauty of this simple colander, he made me realize that he is the perfect father to our two children diagnosed with special needs for he truly sees what others cannot.

I realized that like this ordinary colander, I too am an ordinary Mom with an ordinary function. But to my husband I am not like this colander because it is ordinary, I am like this colander because I am an ordinary Mom who is also bright and shiny. To him, I sparkle, to Pete I am one-of-a-kind.

I use this colander a lot. And every time I do, I laugh out loud. I think it is hilarious how this shiny, beautiful, ordinary kitchen utensil that I use every day is what made my husband think of me.

Now while I do appreciate my one-of-a-kind colander, this year I have a new tactic for Christmas, I am just going to hand him a picture of this:

I hope this time, he gets the hint.
Wishing you all a very Merry Christmas and a Happy New Year

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Lisa Peters writes about family life at Thank you all for reading and supporting us throughout the year.

Wednesday, December 25, 2013 we enter the New Year, may we all have an abundance of these...

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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. 

Thursday, December 19, 2013

Do I say?

One of the hardest things for me to answer to myself as a special needs parent is, "When am I supposed to say something?".  I mean, do I advertise that Ballerina and Music Man are Autistic?  Am I simply making excuses?  And does anybody really care?

When our journey was just starting out, I would tell everyone anytime we went out in public.  You see, it wasn't often that we WOULD go out in public and I would be in a situation where I needed to explain their behavior.  But, as we all got used to things and I started learning more and more, we would make that foray into the world more and more often.  And many times when we're out there, we get stares or awkward glances from people who recognize that my kids aren't behaving as one would expect.  And that's when I have to decide whether I divulge any information.

I could always tell when another Autism Parent was approaching me.  They would usually start the conversation.  Sometimes they would be blunt about it, asking me directly if they were "on the spectrum".  Other times, they would just hint around until I would divulge in the information, and almost every time they would point out their child(ren) and tell me that they understood as their child(ren) was also on the spectrum.  And, as long as I wasn't dealing with a tantrum, we would usually have an open discussion about Autism in general, the types of programs we were familiar with, and other topics that I now find fascinating that I never would have known about if I wasn't an unwilling entrant into the "club".

Making this decision was easy when they were 2 or 3 years old and they really didn't care one way or the other.  But they are getting older now.  They will be 7 in less than a month.  They are both considered to be high functioning......Ballerina is in a general education classroom and Music Man is working his way towards a college-bound high school diploma in his current special education first grade classroom (as opposed to a class mainly focusing on life skills).  They are starting to show signs of the development of a sense of self, and taking pride in that discovery.  Is it fair of me to advertise that they have a stumbling block in front of them, in the form of Autism, that they must learn to cope with?

But now their peers are also starting to notice and ask questions.  I was asked several times while they were in kindergarten why they act so "weird" (in the way that innocent 5-6 year olds ask to learn about the world around them).  When I first heard this, I won't made me angry.  But then I realized that they weren't trying to be mean, but to understand why, when everyone else fell into a single mold, my children didn't.  So, I always gave the simple explanation that they both just see things differently.  I always tell them that it's not a bad thing, but everyone is different and we all need to accept each other for who we are.  They always seemed to be satisfied with that answer.

But adults don't have that innocence.  Adults need more concrete answers.  They too see my children are "weird", but most won't just come out and ask as the kindergarteners do.  Many of them stare.  Many of them glare at them and at me when they see what they believe to be immaturity pouring from my children as they throw a fit in the grocery store because we are going down an aisle rather than up the same aisle.  Or why my child prefers to simply sit in the mulch and play with the wood chips when we go to the playground rather than run around or play on the equipment (especially when the park is crowded).

Is it my responsibility to my children to educate these onlookers?  Is it my job to explain to the world why not all children are the same?  Or am I making an excuse to hide my fear that they see me as an unfit parent?  I always tell the people for whom it's important they know.  Teachers, caregivers, doctors.....they all need to know that when they see Ballerina and Music Man, they are seeing a child with challenges that aren't necessarily apparent when they are first looked upon.

I guess this is one of the challenges for me as my children continue to grow.  My role as their mother is beginning to change.  Until now, I have been the one that they counted on for support and guidance for everything that they do.  Now they are starting to need to rely on others, including themselves.  I will still be there to help them in all ways that I can.  But as they continue to grow, they need to learn how to handle situations for when I'm NOT present to fight these battles.  I will not be with them at school to step in when a bully says something about them in a way that they can hear it.

There is a right way and a wrong way to face the world.  I just hope I am giving them the tools they need to successfully be able to face the world every day.

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My name is Ilene and I'm a delinquent blogger.  Yup.....that's what I've become.  I keep meaning to sit at the computer and write and it just hasn't happened much in a VERY long time.

But I still have stories to share.

I (along with my husband) are raising 3 wonderful children and a crazy dog.  My kids are 8, 6 and 6 (the twins are nearly 7).  My older son is typical (with all of the issues that come with raising a typical boy) and the twins are both Autistic.  And I can't say "No" to activities with the PTA (where I hold a couple of positions), so I'm constantly running over to the kids' school.

If you would like to read some out-of-date stories, please feel free to check out my blog (My Family's Experience With Autism).  And perhaps, by the time you get there it won't be so out of date anymore!

Wednesday, December 18, 2013


I met recently with a grown woman, that had only been diagnosed with ADHD in recent years. She had so many compensatory skills, that it took a long time to get the proper name for what had always plagued her. She is successfully managing it now due to the right med, and what she referred to as behavioral modification.

"What, specifically, is the modification to your behavior?" I asked, having several people in mind I could hardly wait to suggest it to, whatever it was.

"Mindfulness," she said.

"Wow," I said. "I love that. But how does that look, exactly?"

"I ask myself, 'What am I doing, and why am I doing it?'"

We went on to talk about lots of other things that have stayed with me in the weeks since our meeting, but none more so than the two questions she asks herself. I've watched videos. I've read books. I've listened to interviews. I've taken yoga. I thought I understood what mindfulness was and how to attain it, but having it boiled down to those two simple questions, has proven to be the most helpful. I find myself asking those questions of myself, many times a day, especially when I start to get amped up about something.

"What am I doing?"

"Why am I doing it?"

Usually what I'm doing is something compulsive, and why I'm doing it is to relieve anxiety that has nothing to do with the task at hand (which I can control) and everything to do with something else (which I cannot control). Dishes in the dishwasher = everything will be fine.

There is no judgment with mindfulness. No "shoulds," just simple observation and focus on the present moment, noticing it - gently.

"What am I doing?"

"Why am I doing it?"



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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.

Wednesday, December 11, 2013

Seasons of Joy, Seasons of Sorrow

We come to one of my favorite times of year.  The snow (yes I love it), the lights, the carols, the tree, decorations, cookies, secret surprises that I have to hide from a very sharp little boy.  It is also almost "gotcha" day for Marvin Fields.  He came to us December 12. Here is a look back at my little butter bean:).
Awww.  When we got Marvin I thought I had won the lottery.  We went to meet him at his foster family's house.  He was pudgy, wobbly, and had the brightest smile.  I was in love from the get go.

His foster family had first choice to adopt him, but they had already adopted two children and wanted him to go to a family that could not have children.  It was supposed to be a slow and gradual process, but a day later we were told that Marvin needed to be placed with us in the next couple of weeks.

So we scrambled to get everything ready.  How we pulled it off I have no clue, but we did.  I had Christmas up and rolling and had visions of mother son bonding under the tree with stories and cookies.

Marvin left for preschool that morning unaware that his world was about to shatter.  His social worker picked him up at noon with all of his belongings in her car.  He cried himself to sleep and when he woke up he was with his new family.  I was beside myself with joy.  Marvin, not so much.

When he woke up and realized that his things were in a new room big tears rolled down his fat cheeks.  His foster father was deaf so all he did was walk around the house signing for his daddy.  He wouldn't come near us.  He cried like his heart was being broken.  And it was.  All that joyful bonding went down the toilet.  Marvin was scared, homesick, and heart sick.  My child had already survived massive amounts of abuse and we basically took away the only family he ever knew and expected him to be joyful about it.

Marvin began the healing process.  My son is a survivor.  But while I love the holidays, Marvin remains shaky about them.  For the outside world he puts on a happy face and tries to participate with all that he can muster.  That after all, is the socially acceptable thing to do.

But there are times when the pain and fear resurface.  Marvin has a harder time going to school.  He was taken away from the only family he knew, whose to stop someone else from taking him?  Sometimes, I can't even leave the room without him melting down.  So I hold my child tight and assure him the best I can.  I take him with me.  He holds my hand with an iron grasp afraid to let go.  Someday he will believe he is safe.  Until that time I just hold him tight.

He looks at our tree and cries.  He doesn't understand why he is so sad.  He tells me,"Mommy, my heart hurts."  He has nightmares, meltdowns, and he gets angry.  As I sit and rock him my heart breaks over and over again.

So how do you teach a little one to find joy?  To feel the magic of the holidays?  Nice and slow.  I coax him to cook with me.  I read him stories of our faith.  I teach him our family traditions.  But most of all I let him know that it is OK to feel sad and angry and scared.  That he is surrounded by love and people who will protect him.  That someday he may want to do more, but for now it's OK just to watch, to take in, to process it all.

Slowly, Marvin has been a bit better every year.  This year he asked to put up the tree, a first. We take it slow and explain things.  Marvin is not good with change, but he is less resistant to it every year.  I may never get the Christmases I dreamed of.  Marvin has a lot he still needs to process and work through.  It may take a lifetime.  But I am learning that it is OK to let go of the fantasy and build Christmas our own way.  To take is slow and rejoice in what I have and not mourn for what can't happen.

The best gift I can give my son can't be bought and put under a tree or in a stocking.  It is the gift of letting him be himself and loving him just the way he is.  That is what makes the holidays, and our lives magical.

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Amy Fields is a wife, mother, and advocate.  You can read about her family in her blog Many Kinds of Familes

Thursday, December 5, 2013

Embracing change!

We all have our own little routines and familiar patterns that we feel uncomfortable deviating from. I have this compulsive need to floss my teeth each night before brushing my teeth. Miss a night and I feel a little uneasy and am forever moving my tongue around my mouth, feeling for bits that may be caught between my teeth. (Sorry, too much info!). This is standard stuff and let's face it if I miss a night it is not the end of the world. I may feel a little antsy, however, I can shrug it off and say "oh well, I will floss tomorrow morning!"

Throw autism into the mix and it is another story. For years my son could not and would not tolerate any changes in his life, whether it be change of routine, type of food or even driving down an unfamiliar road. I was extremely fixated on keeping the peace; and keeping everything the same in order to prevent my boy from becoming terribly distressed. I didn't like to see my son unhappy and totally out of control of his emotions and unable to regulate himself. It was depressing and absolutely heartbreaking. It was terrible to live in this state, continuously tiptoeing on eggshells to avoid drama.

As time moved on, I learned that it was possible to move on from this way of life. I discovered that I could help my child to overcome his high anxiety and his need for sameness. And, I went with it because the alternative was to stay at home with my son and only have two safe places, home and school with nothing in between. That is not a life. I didn't want to become reclusive and I certainly didn't want my son to remain fixed in his patterns and unable to move forward. I wanted our family to have a regular life as much as possible.

I started introducing changes to my son's routine. I am not talking heavy duty changes. I am talking about the little variations that would be a *tiny* challenge for him. I am talking about putting a pen on the edge of a table and saying to him. "I am just going to leave it there for 5 seconds, it will be fine". During those five seconds I would be giving him reassuring smiles, knowing all the time that he wanted to clear that table because NOTHING was allowed on the table. Five seconds. That is all.

More little changes like;

Adding a tiny piece of carrot to his Spaghetti Bolognaise sauce. "Oh wow, I see some carrot" (it took a good six months before he would eat the carrot, however, he was comfortable with it being there!)
Driving down the wrong road, "Oops, silly me, I have driven the wrong way... but it will be fine"
Getting him familiar with going to ONE coffee shop. Then introducing another coffee shop.
Cutting his toast in different ways and spotlighting the change.
Wrapping his school snack in paper one day, tin foil the next ~ and spotlighting the difference.
Moving his chair to a different place. Sitting next to him. Sitting opposite him, so on and so forth.

I could go on and on.....

These days I have a flexible child who adapts to change very easily and the word 'transition' doesn't enter our vocabulary. He no longer needs a visual schedule and is perfectly fine if I change my plans at a whim. This afternoon, my husband arrived home to pick me up as we needed to collect my car that had been in the garage for the day. Nick was playing on the computer, however, when I called to him "let's go, we going out!" he shut down the computer and came to join us. When we arrived at the garage, it wasn't possible for him to stay in his Dad's car so he came into the showroom with us and waited patiently while everything was sorted out. He showed NO signs of stress over the fact that he was in a brand new place and everything was unfamiliar (except for his old Mum and Dad!). He did not ask for "car". He did not ask for computer, iPad or anything else that he uses to escape. He was a regular kid, out doing chores with his folks. Absolutely brilliant stuff.

I know that we have a long way to go. Food issues are still a problem, however, he has made some lovely 'healthy' progress of late. He is also uncomfortable when in the company of a lot of people, although he is happy to go visiting with us and will quickly make himself at home wherever we go. The iPad helps tremendously in situations like this.

Gone are the days that we had to stay at home. Gone are the days when we had to make arrangements to leave him at home while we went out and about. These days he comes with us and we are no longer a family divided. Of course we make accommodations for him, we also do the same for his brother. Our life may not be the same as Mr and Mrs Joe Soap with their regular 2.5 children who live down the road, however, this is our life and we are making the most of it.

Little changes have made our boy more flexible and comfortable with trying new experiences. The little changes are paving the way towards bigger challenges. Slowly and surely, step by little step, we will guide him forward. Watch this space!

Now, where did I put that dental floss?

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Di is the very proud Mum of two teenage boys, one of which who just happens to be autistic. You can find her over at The Bright Side of Life.

Monday, December 2, 2013

6 Autism things I don’t do no more

6 years ago when R was first diagnosed, DH and I had endless passion about so many Autism things. I focused so much on a to-do list. If I could have looked ahead I think I would have focused also on a not-to- do list.

Here are 6 things that I used to do a lot and I don't anymore.

First, the Debates of Autism:

I just don’t have the same energy around  Autism controversy like I used to. Case in point- when Susan White of Autism speaks did her dramatic speech (or was it PR release?) and Facebook caught fire –I was about to write a POV. But then.... my Surface keyboard was lying on the chair next to the bed. And.... I was too lazy to get out of bed. So I contended myself with just tapping on “like” on someone whose POV approximated mine. Please don’t be offended if you are passionate about the debates. The debates and the issues are important. Of course they are. But I no longer feel compelled to add my voice.

Second,  forcing you to be optimistic.

I am super optimistic and work hard to be that way. But I realize that that is not everybody’s way. If venting helps you- vent away. If happiness feels irrelevant – so be it.

Third, thinking people with autism have the blueprint on my child:

Autistic adults provide a unique perspective. They make us think of things that we would not have thought of. But I no longer think that an autistic adult knows more about my son than I do. Just because I am Indian, would an Indian stranger know more about me than my black BFF?I don’t think so!

Fourth,no more FOMO:

The other day, I had a chance to listen to Temple Grandin. Those of you who follow my blog know that I am a huge fan. But as I heard her speak – I felt like I had heard the every bit of the speech before. It’s like this with many trainings and books. It was useful in the early years. Not just for learning, but also my need to do something. I had a massive version of FOMO – fear of missing out. I felt that without doing a training etc. we would be missing out something crucial for R. But now mostly we seek less, do more.

Fifth, thinking I have the answers or can find them if I look hard enough:  

We have read so much, talked to so many specialists, met so many parents and autistic people. And guess what? Autism is still a mystery. The one thing I know, is that I don’t know. Now when newly diagnosed parents ask about things like DAN – I just say – “use good sense"

Finally, Autism and Identity:

I think I am going to wait to see how R feels about his Autism without assuming that he will
a.     Be ashamed of it and want to hide it
b.     Think it’s a part of his identity or even be all about autism pride.
My hunch is that he will be matter-of-fact. Since DH and I are very matter-of-fact. I showed him my blog the other day and asked him if he felt okay about me writing about our family and he said he said was totally okay!
The question, whether he is who he is, because of his autism or in spite of it is irrelevant.

There are things I continue to care about and feel passionately towards regarding  autism, even after all these years and I will tell you about those in another post some day.

Floortime Lite Mama writes about Love, Life and Autism at

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Sunday, December 1, 2013

ACA Deadline-Alternatives to enroll so caregivers can protect their family

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By now most of you have heard that families couldn’t get on the website to enroll in healthcare.  The Marketplace will also help families with costs or if they're eligible for Medicaid.  However, things are getting better and most of the glitches are gone.  In addition, there are other ways besides the website for families to enroll. 

*The deadline to enroll is 12/23/13 (just extended from 12/15) for coverage that will be effective 1/1/14.*

What families can do:
Families can apply by phone, online, in person with the help of an assistor, or mail a paper application.

1.     phone (800) 318-2596 24/7


3.     find help in person

Family caregivers can have more peace of mind knowing that their child with special needs, as well as all family members, are all covered by insurance in the New Year.

The main website where all of this information can be found is

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

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

Monday, October 28, 2013

Hungry for Answers

Sometimes I feel like my life is defined by the answers I give to certain questions.

How old are you?

Where do you live?

Do you have any children?

But as the parent of a child diagnosed with PWS, there is one question I do not like to answer.

It is a question comprised of only four words.

A question every parent of every child ever diagnosed with Prader Willi Syndrome will be asked.

The answer to this question will expose the intensity of your child's affliction and define exactly where you are on your journey coping with this bizarre syndrome.

When I hear it, a little piece inside me dies.

"Are you locking yet?"

All children diagnosed with Prader Willi Syndrome will develop an insatiable appetite. For some, this uncontrollable desire to eat occurs within the first few years of life. For others, it is a slow but steady interest in food that builds in intensity over the years until eventually the child is unable to control his eating. In either scenario, the end result is the same, parents must begin to lock their food.

For my son Nicholas, the hunger was like a slow moving hurricane. At first, it was a few light sprinkles, followed by a steady rain, a downpour and eventually...the monsoon.

During his early childhood years, Nicholas was spared from the merciless attack of the constant hunger of this deadly aspect of the syndrome. He was in a way, invisible and safe from the jaws of this voracious animal.

But tales of the incomprehensible struggles of our compatriots moved us. There were descriptions of padlocks drilled into kitchen cabinets and bicycle locks wound around refrigerator door handles. Piles of empty food containers found hidden under beds and heart wrenching stories of the uncontrollable rage of a child who is denied food, screaming from a hunger that is  fueled by a ferocious need to eat.

Although Nicholas was not exhibiting this behavior yet, deep down inside I knew it was coming.

For 11 years, I lived with a constant fear, a needling finger of doubt tapping me on my shoulder, taunting me, whispering in my ear...."it's coming"

Every day, I wondered when?

When would my son lose his battle with this ravenous beast?

When would we begin to lock?

This week I received my answer.

During my weekly run to the grocery store, I purchased a large bag of grapes and placed them on the bottom shelf of our refrigerator. I ran upstairs to put away a few supplies. When I returned to our kitchen, there was Nicholas with the refrigerator door open, his hands busily plucking at the bunches of plump fruit.

I stopped short in my tracks, I was speechless and immobile. It was as if I slammed head-first into a concrete wall of a new reality.

For a child without PWS, this raid would seem like typical teen behavior. In fact, had it been Weston pilfering grapes, I would have praised him for choosing such a healthy snack. But this was Nicholas, and this covert act was the first time he helped himself to food in the fridge.

Nicholas was no longer invisible. The beast had found his missing prey.

It was time for us to lock.

I was surprised in my search to find a solution. There were a variety of locks available for purchase online. I bought a simple lock and key mechanism. I realized that as he gets older and hungrier, this may not hold up to his more focused attempts at food seeking. But for now it was a good first step.

It took a few days for the lock to arrive. In that time, I noticed the grapes had completely disappeared. Any reservations I had about locking were quickly dissolved.

When the lock arrived Pete installed it quickly onto our fridge.

The sight of it made me angry.

To me, it was a symbol of hopelessness, a shiny metal reminder of how helpless I was at protecting my son from the torturous hunger that consumes him.

I asked the question that every parent of every child ever diagnosed will ask again and again and again.


In our culture, food is synonymous with love. Holidays, parties and special gatherings are times for over-indulgence, a pouring out of our love for one another. Locking all access to food feels, in a way, like we are denying our son this love, denying him his right to a happy life.

Burning tears blurred my eye sight. I quietly brushed them away as Nicholas came up beside me to inspect Daddy's work.

"What's that Dad?" he asked curiously.

Pete knelt down to speak directly to Nicholas. I was thankful for my husband's bravery.

"Well Nicholas," he explained matter-of-factly, "We need to be sure that no one eats after supper. So we are locking the fridge."

"You are?" he asked.

"Yes," Pete answered.

"Who will have the key?" Nicholas asked and I knew he was worried that perhaps he could find it.

"I will," said Pete.

"Where are you going to put it?"

"In a secret place that only Daddy knows."

"You are?"

"Yes, I am. No one is getting in the fridge all night."

"Oh, thank you!" said Nicholas and he hugged Pete tightly.

Nicholas was visibly relieved, happy I think, to know that he did not have to fight a battle he knew he could not win.

His happy response to our strict food enforcement taught me a valuable lesson.

Sometimes, all I see is his suffering.

I do not see his resilience and his steadfast spirit.

I do not listen to his subtle answers to my difficult questions.

Today he taught me that sometimes simple approaches can solve the most overwhelming challenges.

By locking our food, we alleviated his stress, kept him safe and more importantly respected his need for our assistance.

Perhaps there is no greater love.

For info on our refrigerator lock, go to:
Please forgive me.
We live in Boston,
 where folks here are born die-hard Red Sox fans

Go Sox
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Lisa Peters writes about family life at Please feel free to come visit us. To learn more about Prader Willi Syndrome or to make a donation, please visit our national organization at

Thank you for reading.