Thursday, March 28, 2013

A Family of Strangers

"You must be excited," the friendly nurse at Children's Hospital said to me.

"You finally get to bring home your baby," she added smiling brightly.

I looked at the pretty young woman and lied through my teeth.

"Yes, I am, " I answered. But deep down inside, I was terrified.

I left the hospital with my newborn infant and a one-page description of a bizarre and frightening disease called Prader Willi Syndrome.

At home, Internet research listed nothing but horrific descriptions of individuals plagued with insatiable appetites, uncontrollable behavior, and morbid obesity. Scholarly articles described the clinical aspects of PWS with gruesome pleasure, documenting disturbing issues of skin picking, OCD and self injurious behaviors. The more I read, the more it seemed that the tiny infant I discharged from the NICU was destined to become a monster.

I was scared.

Family and friends who supported me throughout my life were now, like me, unprepared and unfamiliar with this strange and devastating new disease. They too were suffering. And although they offered me their love and support; they could not provide me with what I needed most....familiarity and instruction.

The astute physicians at Children's Hospital outlined the physical aspects of the disease but they too were overwhelmingly unprepared to educate me on the reality of what life would be like living with PWS.

The future looked so very frightening.

I turned once again to the Internet where I found several communities devoted to serving parents of children diagnosed with PWS.

These small groups of strangers suddenly became my lifeline.

From these parents, I learned how to feed a child who was too weak to eat.

I learned about important new therapies, supplements and medications that would improve the strength of my weakened son.

As he grew, I learned how to diffuse behavioral meltdowns, lock kitchen cabinets and soothe scratched skin.

I was provided with instruction, support, and a deep understanding of the overwhelming challenges we faced.

Like soldiers who serve on the battlefield together, these individuals became my family.

And much like the dynamics in a "typical" family, we are, at times, dysfunctional, lashing out and dumping our frustrations on those who share our deepest wounds. But like this family, when we share our difficulties we also become stronger.

From these invaluable fellow parents, I learned how to raise a child with an incurable disease.

I learned that despite my son's terrible diagnosis, a happy and fulfilling life was possible.

This is Fred, Amber, Chris, Alberta, Denise and Fred Jr. Although I have never met them, their journey living with PWS has given me much hope and inspiration.

 Amber, dressed in yellow, is 33-years-old and was diagnosed with PWS when she was four.

Although she is Chris's daughter, Alberta and Fred (her grandparents) have raised her.

Now in their 70's, Alberta and Fred first met at school when they were 10-years-old, where Fred abruptly announced to his fellow classmates,

"That's the girl I'm going to marry!"

Married for almost 60 years, they have raised three children, and fostered several more. They have 6 grand children and 12 great grand children.

Alberta explains that Amber learned to walk when she was 3-years-old. But since that time she has not stopped moving. As a child, she participated first in dance classes and then in a martial arts program where she earned an orange belt. She started bowling when she was five and continued to play throughout high school, earning the highest average.

"We are so blessed with what she can do," explains Alberta recalling when Amber was a small child and begged to ride the roller coaster at the amusement park in Virginia.

"I can still hear her yelling RIDE, RIDE!"

Amber and her family continue their thrill-seeking adventures. This summer, they rode a series of zip lines across a canyon and over the Snake River in Idaho, where according to Alberta.

"Amber was the first one to ride on all of the lines."

Keep in mind Alberta and Fred are in their 70's!

Alberta and Fred love to travel and exposed their daughter to this adventuresome lifestyle at a young age. They traveled in the US from coast to coast with Amber in a backpack or stroller. When she got older, they visited places around the world, like Rome, Australia, Alaska, Mexico and Jamaica.

Alberta, Amber and Fred in Rome

"She rode in the back of a jeep with birds flying at us, down a dusty road in Jamaica and helped paddle a raft down a back river in Cozumel." explains Alberta.

They have encouraged Amber to become independent.

"She has been to camp for almost 20 years, traveling 12 hours each way to get there, we try to expand her mind."

Currently, Amber continues her active lifestyle. She loves to ride horses and participates in shows where she earned ribbons this year in pole bending and barrel events.

She continues to enjoy bowling. She is in an adult league where she has participated for 10 years, earning a high average of 160.

In the summer, you may find her swimming in her pool at home.

 Amber has several pets, seen here with her dogs, Molly, Abbey and Lucy. The two giant pumpkins were grown in their garden.

 She is active and adventuresome, with many hobbies and interests. She has traveled around the world and made many friends. She is a kind, loving and independent young woman with a happy life and a free spirit. She was raised by two selfless individuals who refused to let words like disability or Prader Willi Syndrome alter their quest to enjoy life.

And although I have never met this family, they have given me the precious gift of hope for my son and his happy future.

How do you thank someone for this?

Life is a daring adventure or nothing at all. - Helen Keller

- - - - - - - - - - - - - - -

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

Thank you for reading.

Monday, March 25, 2013

Irritating Platitudes.

Every once in a while I'm at home while the program The Doctors is on. On this particular day a few weeks ago there was a story about a child born without hands and one of the doctors said something that was irritating to me as a parent of kids with special needs.

He said something about how having their child with those issues would make them "better" parents so I did what I do usually when something is irritating to me and I blog about it.

Oh, the platitudes. (Another trigger for me is "God wouldn't give you more than you can handle.")

My reaction was pretty strong (and I'm still thinking about it). It hit me so strong because I am certain I would have also been awesome had my kids been healthy and had they not been challenged at every turn. I didn't need my kids to suffer needlessly in order to be better.

That isn't to say parenting them hasn't made me different, because it has. Oh, if I could count the ways.

- I have a strange sense of humor I haven't always had because it can be dark sometimes.
- I ask for help easily and I appreciate friends who match socks and bring muffins, who send cards and call on big appointment days or when crisis strikes they just literally show up.
- I listen to my gut instinct and I can't say I did that before kids.
- I'm a bigger fighter than I would have been, obviously.
- I appreciate small milestones.
- I appreciate good insurance, low deductibles (never thought about what insurance covered before, really).

I'm thankful I've learned some of these things but it would have been nice to figure them on my own instead of because my kids' suffering and challenges.
- - - - - - - - - - - - - - -

Julia writes at Kidneys and Eyes, co-founded Support for Special Needs, writes at Aiming Low and survives on Diet Coke. She's been married to a guy named Julian for nearly 20 years (true story) and has two incredibly cute kids.

Wednesday, March 20, 2013

As Time Goes By

My sweet boy will be 4 on Saturday.  I can't believe it.  Four years old.  When did it happen?

I'll tell you when it happened.  It happened in between the therapy appointments, the evaluations, the worrying, the additional worrying, and the doctors visits.  It happened in waiting rooms and therapy gyms.  It happened in special education classrooms.  It happened in the company of therapists, special education teachers, para-pros, and doctors.  It happened in support groups.  It happened in seminars.  It happened on our living room floor during those hours and hours of Floortime.

And here we are.  We have before us a beautiful little boy of almost 4 who has made great progress with all of the everything that we do each day.

Yet he's still autistic.  He still has special needs.  Two years into his diagnosis (he was diagnosed at exactly 24 months), he is still in intensive therapy.  In fact, we've increased the amount of speech he receives in school, and we've increased the amount of private speech and OT over the past 2 years.

And he still has special needs.  He's still autistic.  He always will be...and that's okay.

It's okay!  Really, truly okay.  I won't lie; parenting my kid isn't a piece of cake, but it is worth it every minute of every day.  Meltdown filled or not.  Verbal or not.  Struggling or not.  It's okay.

We move forward under that banner that says "This is okay.  My son is wonderful just as he is."  It's a good place to be - a better place than we've been before - and my hope is that raising Jack in a house of acceptance will help him love the wonderful, unique, and individual person that he is.

We've also learned to stop and enjoy life.  We've learned to not get bogged down in the everyday details of raising a child with special needs.  Sure, we still have all of those therapy sessions, doctor's appointments, evaluations, paperwork, and IEP meetings to contend with each and every day, but we also don't feel like we're running a race anymore.  It's no longer the thought that we must cram so much in before a certain point.  Instead, we know that our boy will grow and develop at his pace - a pace that is uniquely Jack - while supported by the teachers, therapists, and his parents who love him so.

The 4-year old before me is one of the hardest working, most inspirational people I have ever met.  In his barely 4 years of living, he has done something that most people cannot claim - he has touched lives.  People who have never met him can read about his life and smile, cry, sympathize, laugh, and feel like they are not alone.  What a gift he gives!  Jack - at times - brings out the worst in humanity, but far more often than not he brings out the best.  There are people who I went to high school or college with who read about Jack and gain awareness about autism.  Awareness, where there once was none.

All of this because of one little boy.

And so it is with the utmost joy that I can say Happy Birthday to my sweet angel.  It is my privilege to be your mother and to walk this journey with you.  I will always be at your side, supporting you with each step in whatever way you may need me.  You have already made such an impact on your world, and for that I am so incredibly proud.  I am blessed to get to share your life with you.

- - - - - - - - - - - - - - -

Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-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!

Tuesday, March 19, 2013

Why We Must Remain "HOPE"ful Parents

I want to share a story with you.  This story shows me, and I hope it shows you, the important role that we as parents play in our children's lives.  Not just in the way most people think loving them and caring for them and raising them, but also by advocating for them.  By setting goals for them and expecting them to reach for them, and knowing when it was time to call a victory, even if it means modifying the goals we have set.  By recognizing that we know our children well enough to have trust in their abilities to succeed, diagnosis or not.

This is a true that happened to me when my twins were 38 months old (so a year after they were diagnosed).

There is a local organization here who strives to help students on the spectrum from kindergarten through 12th grade who are working towards a college-bound high school diploma.  Their specific mission statement is (taken from their website), "To promote, support, and advocate for the education of diploma-bound students on the Autism Spectrum in grades K-12".   As a parent of 2 children on the spectrum, I believed this to be a great organization to be a part of.  True, we weren't as far as kindergarten at the time, but it would be good to know what resources are available when we needed them.

As a member, I volunteered to help out at an event they were running.  The purpose of the portion of the event I was helping with was to educate parents and teachers of preschoolers of what resources are available to help get children services if those services were needed.  One of the attendees was an officer of this group.  She is a Parent Educator with our county's Early Intervention Program and a parent to an Autistic son.  I sat through the session and then was having a conversation with her at the end.

I introduced myself and told her about Ballerina and Music Man.  I told her the preschool programs they were each attending per their IEP Meetings a few months previous.  These happen to have been 2 of the more intensive programs that were offered by the schools (Ballerina was in a full-day ABA Program and Music Man was in a more generalized program that is generally considered quite intensive).  She then asked me what I was doing there.  When I told her I was there trying to learn what I could to help them when they were ready to begin kindergarten, she informed me that they would NEVER be diploma bound and I was simply wasting my time.

Skipping ahead a couple of years to kindergarten, Ballerina is now in a General Education Classroom (with supports) and has been successful once the transition period was over.  Music Man is also in an academic program, working his way towards a college-bound high school diploma, but he is in a self-contained Special Education classroom.  Both of them are EXACTLY the types of students that this organization is designed to help.

In other words, the "expert" was WRONG!

If I had listened to her, I don't think we would be where we are right now.  I don't know if their own personal drive would have been enough to push them towards the successes that we've seen.  I knew my children.  I knew the potential that they possessed.  I knew that they were bright and starving for knowledge.  And I pursued.  And now we are almost exactly where I envisioned we would be and far further than where I expected we would be at this point in time.

The worst part of this story is the lack of knowledge an authority figure possessed.  This woman is a Parent Educator, working with families who are just learning of their child's diagnosis.  For many of them, I can only assume they are thinking the same thing I was thinking at the time.....that their children's futures are ruined.  They need encouragement.  They don't need someone shooting down their goals and allowing their children to not develop to their full potential.  Because, I'll be honest, getting Ballerina and Music Man to where they are now took a great deal of pushing on my part as well as by their teachers.  Where would we be if we lived in a different part of the county and she was our Parent Educator?  Our Parent Educator may not have thought that we would see so much success by kindergarten, but she NEVER told me that.  She encouraged me to do everything that was in my power to help my kids.  And whatever happens would happen.  Just keep pushing forward.  And that's exactly what I have done.

It may be hard, but it's worth it.  My children are on their way to the bright futures they deserve.  And all because I remained a "HOPE"ful Parent and didn't allow anyone to convince me that they wouldn't achieve success.

- - - - - - - - - - - - - - -

My name is Ilene and I am a SAHM with 3 amazing children, a loving husband and a dog.  My children are 7 and 6 year old twins.  Both of my twins (girl and boy) were diagnosed with Autism at the age of 26 months.  I have a tendency to take on more than I can handle, but this sometimes feels like it's a little bit ridiculous.

My personal blog is My Family's Experience With Autism and I write stories there whenever I have the inclination and the time.  I also submit stories periodically to The SPD Blogger Network or whoever else would like to publish my stories.

Monday, March 18, 2013

Mother/Son Dance

This photo of me right before the Mother/Son Dinner and Dance is fairly representative of the whole night. True, Wil did, technically, pose for a few pictures, but I'm not sure two-and-a-half seconds of standing there next to me, really counts as "posing." He informed me a full month before the event that he would go, "But I won't sit by you, talk to you, or dance with you." He was good on his word.

That's not to say we didn't have a ball. He had his ball, I had mine. I talked with friends and even got asked to dance by one of Wil's friends, Jack. Sweet Jack and I did the Boot Scootin Boogie. Wil drank five glasses of fruit punch, four dinner rolls and four brownies. He mixed it up with his friends and made a few new ones, not that they really know that's what happened.

At one point a senior and his mother made a point of coming up to meet me, and separately, of course, Wil. The boy, we'll call him S., for stud. "S. comes home with so many Wil stories, I feel like I know him, I just had to meet you guys," she said. S. is one of Wil's student assistants and he truly is a stud. On the football field. On the basketball court. In the classroom. In Wil's heart. "S. wants you to come to his graduation party this spring. It's really important to him."

It's hard to be both a giant PITA and yet worm your way into the hearts of many, but somehow Wil does it every time.
- - - - - - - - - - - - - - -

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, March 14, 2013

Sick Days

Moe doesn't get sick very often (knock wood), and now that he isn't in school he is exposed to even fewer viruses. But last weekend, he caught something. It didn't seem serious. He had a low grade fever that I treated with one dose of ibuprofen then never returned. He didn't want to eat much, but was drinking water and wasn't dehydrated. He was tired and mellow, content just to hang out on the couch or in his room.

And it was kind of nice.

Please don't misunderstand. I wasn't happy that Moe wasn't feeling well. I felt terrible that he wasn't himself. I don't like it when my kids are sick, especially Moe, who doesn't have the words to tell me what hurts.

But I have to admit that life was easier. Moe didn't kick and scratch me when I changed his pull-up. He wasn't constantly climbing the walls (literally), or taking apart his room. I took my daughter out shopping and wasn't worried that Moe was giving my husband a difficult time. He went to bed easily and I had a few days where I wasn't on edge every waking moment. Ironically, I feared less for his safety when he was sick than I do when he is healthy.

I couldn't help but think, "is this what it is like in other families?" I try not to play the comparison game too often. And of course I know life can be hectic and difficult for all families. But in our family, there is no such thing as a relaxing afternoon at home. We are always on alert, always under stress just by being awake. And of course, Moe is too. He seems so restless in his own body, unsure how to occupy his time. He wants things he isn't able to express to me, or that I can't understand, and he gets frustrated.

But with Moe under the weather, it just wasn't like that. We snuggled. He was happy to have me scratch his back or hold his hand. Moe seemed to communicate better, very clearly expressing "yes" and "no" and making more word approximations. It is almost like his body and mind had slowed down enough to let him focus.

Moe is returning to his old self again. His hoarse voice is returning to full volume, and he was excited to go outside to play yesterday. Today he is back to his therapy schedule, and by the weekend I expect he'll be back to normal, running and climbing and keeping us all on our toes. I was glad for the break, but I'll be glad to have my healthy boy back too.

- - - - - - - - - - - - - - -

Read more about Jen at her personal blog, Anybody Want A Peanut? You can also hear me read a previously unpublished piece at Listen To Your Mother, Sunday, May 12 in San Francisco.

Monday, March 11, 2013

They Tying and Breaking of Binds

My adoption journey has never been a simple path.  It seems like when my parents took that same journey many years ago, they went in, requested kids, had a visit or two, and whamo two little girls came into their home.  Easy peasy right?

For us we have dealt with social workers, classes that tell you your kid will have issues, foster families, and a system so broken that it seems like it just should be scrapped and someone should come up with a whole new one.  Roller coaster days and nights.

But never in all this mess did I have to worry about bio parents.  Until last month.  Last month I took my anger, resentment, hostility, and fear to court.  My social worker had sent me soothing e-mails about what a good Christian I was and that she was sure I would treat Cary's bio family with compassion.  But I alas, am very flawed.  I didn't feel compassion.  Many other things, but compassion, not so much.

Our case was at ten so naturally we didn't get into the court room until 12:30.  Thankfully I had support that day.  A friend of mine came and sat with me and kept me talking and thinking about other things.  Plus she brought chocolate! I don't know if she will ever know how much that meant to me.  It meant everything just to think about normal stuff.  Plus my rocking mother in law came along.  She kept Shannon distracted.  Not that he seemed remotely phased.  Only his wife was coming unglued.  I had requested sedation, but everyone thought I was being funny.

When we went in my friend came with me.  The bio family has a few other children outside of Cary.  When bio mom and dad came into court I found myself looking at them.  They were both in handcuffs. Bio Mom was petite and had traces of prettiness that jail was working hard to take away.  She turned and mouthed "I love you and it's O.K. " to a woman who sat weeping behind me.  I am sure it was her mom.  Bio dad was tall and slender.  I could see where Cary got a lot of her looks from.  She has his hair, his face, and eyes.

The first part of was sad.  Their first child was set free to be loved by another family.  The bio family sat behind me and wept.  I felt for them.  Then they all cleared out.  It was as if Cary did not even exist for them.  Fine with me.  I was so keyed up by then I was sure I was going to puke on Shannon or my friend.  I also wanted to yell at bio mom and dad.  Or faint.  I was a mess.  I thought about shoving some of that chocolate in my mouth, but I am sure that would have been frowned upon.

The judge commended the bio family on signing over their rights.  All parties agreed that the minor was doing well and she was in a family that was willing to adopt her with all of her issues.  It was going great, the end was coming, and the papers were going to be signed.  It was a great feeling.  I was also holding it together and not bringing shame upon our area of the court room.

Then bio mom turned around.  She looked at me.  She looked right at me.  I don't know how she knew who I was but she did.  She mouthed two word at me.  Just two.  "Thank you."  And she meant it.  She willingly gave up her child.  She released her child to people she does not know and she knows that she will never see her again.  She broke her bond to let Cary have a chance at a good life and a happy home.  The breaking of one family for the creation of a new one.

I was able to let go at that point.  I mouthed "thank you" back at her and I cried.  Hard.  I was pretty sure they were ready to check me into a mental home, but I didn't care.  Bio parents were cuffed and sent back to jail.  We walked out. I left my bad feelings in the court room.  There just isn't room inside of me for them any more.

We are now free to move forward.  To make plans, have hope, and dream dreams.  I am ready.  So very ready.

- - - - - - - - - - - - - - -

Amy Fields is an adoptive mom with two special needs kids who runs around in a cape and tights all day (just wondering if anyone ever reads the bios besides me :) ).  You can view her crazy upside down life on her blog at  

Saturday, March 9, 2013

Love Being Yourself

I work at a wonderful school, and recently had the opportunity to advise a middle school community service group that chose to work at a nonprofit for individuals with Down Syndrome and autism.

As an adviser, I was asked to provide reading to my students to help them learn about the area of service they selected. I considered numerous fiction and nonfiction books that would help young teens learn about people with DS and autism. In the end, I chose I Love Being My Own Autistic Self ( At first, I felt guilty that the book only included autism. But to me, it’s about loving people for who they are, and the importance of a strong sense of identity and self worth. This is a universal theme, one I wanted my students to embrace.

As I told my students, when you read about one character with DS or autism, you get a single experience. That experience does not necessarily represent a community.

But Landon Bryce’s unusual book of cartoons reminds people that, no matter what label a person has, everyone should be celebrated and welcomed as they are. From the discussion with my students, and the loving, respectful way they approached their service with children at the nonprofit, I believe I made the perfect book choice.

I encourage you to read it, too.

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

Tuesday, March 5, 2013

Siblings and responsibility!

On a number of occasions over the last few days I have attempted to write something meaningful for this monthly post of mine!

I am stuck....

I am missing my friend, who is still in ICU. It has now been five weeks and we still don't know the outcome.

As mentioned in last month's Hopeful Parent post, the tragedy has been a wake up call for me. What on earth is going to happen to my Nick should anything happen to me and/or my husband?

Some time last week, I found myself alone with my first born, Thomas. I am not sure where it came from and I certainly didn't plan to bring up the subject of Nick's future. I blurted out, "I am sorry Tom, Tom... I never wanted to put you under this pressure, however, there may come a time that you will have to be responsible for Nick".

There was a short pause; and then he said....

"I am willing to take it on. He is my brother".

I love him deeply for his maturity and his commitment to his brother. I remain hopeful that I am around long enough so that he doesn't have to take on the responsibility.

- - - - - - - - - - - - - - -

Di lives in sunny South Africa and she blogs about autism and all that goes with it over at the Bright Side of Life

Saturday, March 2, 2013

Going on.

A reminder showed up in my email today 


"Your digital library book will expire in 3 days. If you purchase Curious George Goes to the Hospital from the Kindle Store or borrow it again from your local library, all of your notes and highlights will be preserved.

Its took me back to  three weeks since DH downloaded this book, as we were trying to find a social story to comfort R to for hospital stay

At this point, 3 weeks ago,  R had been sick on and off for almost 3 months.

Eating little, vomiting much

Frighteningly thin

 ( And there was a time when he was at the 99th percentile on the weight chart - we used to joke if he gained one more pound- he would be the fattest kid in America )

Lots of GI visits  and no answers

And R in a lot of pain.

"Mama belly hurt, hug me, rub my belly "

And DH and I, knowing the dreadful helplessness that parents of ill children know.

Finally we are at the hospital, as the only way to get some answers is to have some scopes

R is still asleep

The GI specialist has told us before that he thinks that it will take a while probably to get answers - that most likely he will have to get his lab to look at biopsies .

That most likely its a sneaky pathogen or bacterial infection- that the regular antibiotics cannot get rid of .

That we should not expect any answers today.

As we wait for the doctor to come out, I tell DH my secret wish. That R, like Curious George in the story,  has eaten a puzzle piece.

Which is stuck in his tummy.

That this will be a funny story one day

But its not to be

Once again, like another day , almost exactly six years ago, DH and I are holding hands

And the doctor is telling us that "Your son has crohns"

And we are saying things like" But didn't you say that only white people get crohns?

How do we keep taking these wrong turns in life?

I cry a lot the next few days.

All the sad things that mothers of ill children think




And most of all, how could this happen to us again?

For when Autism happens , you think you are done with the difficult thing and that nothing else will happen to you

R's crohns is bad ( For Crohns like Autism is a spectrum )

But also like Autism, even though Diagnosis day feels like the worst day ever, it actually is not

Finding out is the necessary precursor to helping

(For R was very sick last year as well, but seemed to get better with just a few rounds of antibiotics -the particular antibiotics coincidentally that help Crohns

So he probably had a mild "flare" last year )

He did not grow at all last year - and people mistake him often for a 5 year old.

So finding out has probably been a good thing ( however hard its felt )

Just two weeks of starting treatment and R is a different child

He has gained weight

He is running around and jumping again

That horrible unsafe feeling- that anytime , some thing un-good can happen to you -  has gone

That unsafe feeling is true.

Bad things can come out of nowhere

In the 3 weeks of the borrowing period of a library book - I have gone from being the mother of a child with Autism to being the mother of a child with Autism and Crohns

But other things are true as well

You know things you did not know

How strong you are

How weak you are

That you are  lucky to be married to a a man you can laugh with.

But that you are even luckier to have married a man that  you can cry with

That your mum and dad and sister feel your pain like you do.

That nurses are angels

That medicines heal

That you have many friends

That life is terrible

And life is good

I look around my new normal and think

I can do this

I am doing this

- - - - - - - - - - - - - - -

K writes at Floortime Lite Mama about love, life and autism 

Friday, March 1, 2013

Silver Linings

- - - - - - - - - - - - - - -

*Warning:  Not for the faint of heart due to graphic medical language in 1st paragraph. 

*Well, we’ve had to get creative.  After my child slept through a gastrointestinal bleed (sorry but there’s no other way to say this), after we had our morning rush to the E.R. we decided there must be a way to monitor her at night.  We thought of using one of those hospital monitors that read out blood pressure, heart rate, etc. but by the time her vital signs dropped we’ve lost precious time.  She’d already become what they call hemodynamically unstable after and had rescue steroids, dopamine, transfusions, and ended up in ICU.  So we thought of using a potty alarm but (again no other way to say this), she’s a girl so that would only work for 3 weeks out of 4.  So we did this anyway because 75% of the time is better than nothing.  Then I thought hey, what about baby monitors?  Especially the kind that are so sensitive that breathing can be heard?  This would work because, just trust me, we’d hear it.     

Ok I’m done with the gross medical stuff, onto the unexpected benefits. 

So we got the baby monitor which also lights up with sound.  If you remember from last month, my child is autistic and talks herself to sleep.   So I’m thinking, great now I get to hear it in stereo and I don’t really need to hear it on the monitor because I can sort of hear her voice through the wall.  But honestly after spending the past year and a half separated from her at night while she was hospitalized multiple times, I’ve actually turned the monitor on early because hearing her while I’m in bed at night is actually comforting because I know she’s right there, home, in her room.   

Anyway, one night I got an unexpected surprise.  One of the things she does is imitate other people.  So I’m hearing her do what sounds like an interview.  Her sweet voice asks “So what’s it like being the lead guitarist of Black Veil Brides (her fave band)?”  And this somewhat low, nasally, almost teen boy voice responds “Well, uh, it’s like really cool!”  I’ve heard her echo lines from videos but nothing ever like this.  And the conversation goes back and forth and it’s like there’s TWO people in the other room, I’m laughing so hard I’ve got tears running down my face which I put in the pillow because I don’t want her to hear me laughing.  I actually had to turn off the monitor for a few minutes to catch my breath because I couldn’t stop laughing.  And I’m thinking “Thanks Steph for a good laugh, I really needed that.” 

So in something as serious as monitoring a possibly life-threatening condition came such joy.  Silver linings. 

I remember when she was born with one small kidney, respiratory distress, and not expected to make it.  We were literally in survival mode the first three years.  But it wasn’t until she was diagnosed with autism at age 7 that my world came crashing down.  People were understanding about kidney disease but with autism it was like they’d get the garlic out to repel a vampire.  Now that we knew she’d survive, I started thinking about her quality of life with autism.  But still later, I started thinking about how I felt when she had her kidney transplant-how scared I was.  I mean, this is an organ, not just surgery.  I’m in the waiting room with other families and one child is getting a HEART transplant.  I’m thinking “Geez, I’m glad it’s just a kidney” and can’t imagine how the other family is dealing.  Even later, when my child is so ill with gastrointestinal issues and they start talking about removing her colon and I’m wondering if things can get any worse (never wonder this by the way), this time I’m in the waiting room with another family going through the same GI issues but their child also has a brain tumor.  And again I’m thinking “Wow and here I was feeling sorry for myself dealing with a kidney transplant and GI issues and they’re handling a true life and death situation”.  And I wonder how they do it. 

It’s all a matter of perspective.  When she was born, I was worried about kidney disease.  Then  with the new diagnosis, it flipped to autism.  Until her kidney failed, then it switched back to the transplant.  Until she had the GI issues that hospitalized her 8 times (so far.)  So basically it’s what’s happening at the time.   

So just be careful.  You might hear something on a baby monitor that puts it all into new perspective. 

Remain hopeful,


YOU  Remember that families are the experts on their child as they are with them 24/7.  You’re stronger than you think!

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