Friday, June 28, 2013

The Mom Switch

I believe there is a "Mom Switch" located somewhere in the brain of all young boys, a switch that when placed in the on position, enables these growing children to love their mothers unconditionally.

In the early years, a young boy's mother is his everything. She represents beauty, warmth, shelter and love. Her female energy gives her a kind of magical superwoman power in the eyes of her adoring son.

But as her child starts to grow, there is a time in each boy's life when his Mom Switch is abruptly clicked off. Mom's female energy is now embarrassing and unwelcome. She is annoying, nagging and old. The family leadership baton is passed to Dad as he assumes the position of the infallible figurehead and new household champion.

Exiting mother goes from super hero to super hopeless with the sudden flick of a switch.

Weston's Mom Switch flicked early, but dear loving Nicholas seemed to be missing the mother reject button and I thought, just maybe, I was going to get lucky. Perhaps some of Nick's missing genes included a missing Mom Switch. I basked in the sunshine of his stuck button and unconditional love for the past 11 years.

But alas, it was wishful thinking and all good things must come to an end.

Today, I was startled by the very loud SNAP of Nick's Mom Switch turning undeniable off.

It was morning and I was making coffee and toasting an English muffin. Nicholas was in his usual place beside me, helping me pour the water into our Mr. Coffee machine.

"POP" went the muffin as it jumped out of its slot in the toaster.

I grabbed the golden brown muffin and dropped it quickly to the counter.

"Ouch, that's hot," I said to no one in particular.

Well-versed in the smart aleck language of his older brother, the budding new mother repeller replied with a sarcastic tone,

"Well, yeah Mom! It came out of the toaster, duh!"

I froze for a few seconds, stunned by my son's new found ability to zing his poor mother.

Yes, mild mannered Nicholas has learned the art of smart assness.

I thought about the mental skill required to effectively needle a person and realized that perhaps Nick's recent neuropsychology test failed to accurately measure this skill.

While I am sad to have lost the only Mom supporter in the family, I realize that like Weston, dear hearted Nicholas is on his way to becoming a young man.

I hope my self esteem survives.

Do you think our dog, Muffy has a Mom Switch?

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Lisa Peters writes about family life at
If you would like to learn more about Prader Willi Syndrome, please visit our national organization at
Thank you for reading.

Tuesday, June 25, 2013

An Alternate Universe

In my alternate universe I didn't have to have a conversation with my 11-year-old about the harsh realities of the dangers of just walking around in the world and catching something that could harm her or kill her. In my alternate universe, I just didn't.

But I did. I had to tell her the infection she had could be one that is so dangerous it takes lives. I used this as the reason it appears we run, not walk, to the doctor at the first sign of danger.

I believe that honesty with my kids is the most important thing as they grow into the people that will be taking care of their own health care. It was a cringe-worthy discussion for sure. In fact, my husband would have chosen to not have it at all.

Which way is the right way to go? I think it depends on your kids and what they can handle and what you're comfortable sharing and finally sharing in a way that works for you. We go the honest, straightforward route.

I wish I could say I don't mess up (in my alternate universe I surely don't mess up!) when talking with the kids about their disease, progression, symptoms or treatments, but I do. I have to believe that I do it right enough times to outweigh the times that I do not. Maybe it's cumulative, so at the end of my care giving of them, it'll weigh in my favor.

I think the hardest thing about living in this universe is thinking (longing for?) about the alternate one, where these conversations aren't even needed.

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

Thursday, June 20, 2013

An Evening With Temple

Do you know how the universe just seems to present you with exactly what you needed to see when you needed to see it?  So it was yesterday evening, when I spend about an hour just a mere 30 feet away from Dr. Temple Grandin, listening to the grand lady speak of life, of herself, and what has made a difference.


We have had a rough several weeks with Jack.  Ever since right before the end of the school year, his anxiety has become almost more than any of us can handle.  We've been attempting to find that magic bullet of a medication that can bring him some relief, but to no avail thus far.  We're moving on to the next round of medication trials now with the knowledge that each medication we check off the list means the next has more questions, more side effects, and more of the unknown associated with it.  Yet, we press on.  We must.

It is in these moments that hope can seem to slip away.  The moments when changing your 4-year old's diaper is met with a torrent of legs and arms flailing and screaming and when potty training seems so far in the distance because the same anxiety that inhibits the diapering also does the same for toileting.  It's in those moments when you just cannot figure out what will make your child happy, because nothing seems to at the moment.  It's a powerless feeling - this dissolution of hope.  I try to remind myself that there is always a light at the end of the tunnel and that we've been here before and come out on the other side.

Easier said than believed in moments such as these.


When I saw an email circulate recently about Temple Grandin coming to speak here in Atlanta, I felt drawn to attend.  Yet, it would have been easier not to go.  The hubs has had to work a lot of overtime lately and I have simply been so exhausted from dealing with Jack's quickly shifting anxiety that I wasn't sure I'd have it in me.  On the other hand, I knew that I might not get this opportunity again anytime soon, so I needed to go.  I had to go.


After some questionable parking arrangements and almost being made to stand outside while a friend had reserved me a seat inside, I was finally there listening to Temple Grandin speak no more than 30 feet from where I was sitting.  My friends, what she had to say was so real and simple and just made me feel like this lady is the one to whom we should be listening.


While I have always claimed that many of the "stereotypes" of autistic individuals are just that - stereotypes - I can say that the stereotype of the unpretentious, honest autistic does fit Temple.  She is real in a take-it-or-leave-it kind of way.  She doesn't seem to affiliate with one group or another.  She doesn't take sides.  She is just Temple...totally and unabashedly herself.

She's open with the fact that she needs medication to control her anxiety...just like Jack.  As a parent, especially when you hear people debate the decision to medicate their children, it is so refreshing to hear an autistic adult say that they not only need medication, but feel that their lives are better for accepting it.

And yet...she is constantly striving towards perfection.  When asked if we should make autistics conform to the world or the world conform to autistics, she said this, "Both sides should meet in the middle."  She acknowledges that some of the work is hers to do, particularly if she wishes to be accepted in academia and within her career field, as livestock handling is a particularly machismo-male dominated industry.  She doesn't expect the world to bend to her whims, but she longs for a balance in which accommodations are made to help autistics function within this world in which we live.  In her words, "Accommodations should enable."

She also spoke of helping to cultivate the interests of our autistic loved ones in a way that gives them a marketable skill.  She spoke often of the autistic that sits at home playing video games and collecting an SSI check, and how she felt that was a waste of such talent.  In her words, "The world needs all kinds of thinkers."  She spoke of a desire to see hands-on learning return to schools - in the form of sewing, mechanics, and shop classes - and for individualized learning to become the norm.  When asked at what age she learned to read, she informed the audience that it was in the 3rd grade.  She said that the old Dick and Jane books of our youths were of no use to her - that she couldn't learn given that style of teaching; however, her mother hired a tutor to work with her on reading and within a semester, by using books that centered around Temple's interests, she was reading at a 6th grade level.  She also encouraged parents to help their autistic children find a mentor in their area of interest who could guide them and help cultivate in them a greater understanding of just how they might contribute to that given field.

Yet, what Temple Grandin brought to that room before even opening her mouth was one word - hope.  Just her presence was a symbol of what could be.  She spoke of autistics as lifelong learners, so parents should not be discouraged when their child does not meet a particular milestone until much later.  Something she encouraged - and something I needed to hear in my particular moment of feeling so low - was that parents need to continue to push and guide our children to help them find a practical use for their talents.  That strengths should be encouraged and that parents should work towards helping our children function within a world that seems so counter to their very way of being.  As a mom who has struggled with that very question - Am I doing too much?  Am I pushing too hard? - I needed to hear that it was okay.  In fact, Temple seems to have a great deal of respect for her mother's tenacity in never giving up.

It made me hope that in spite of Jack's resistance at times, he will one day look back and appreciate how I've tried to help him find his way.

Support.  Encouragement.  Guidance.  Individualized learning.  Those were her messages.

One of her loudest messages went unspoken, but it needed no words.  Her presence articulated it all.  Look at me.  I am okay.  With the right support and encouragement, your child can be here, too.  It's within your grasp.  Their "okay" might not look the same as mine, but it will be okay nonetheless.


Honestly, I came home to a Jack who had put his father through one hell of a night.  He was up until 11:30 PM, and I was crashing.  However, I thought back to Temple, about the predictions her mother received and just how far she had come.  She didn't speak until about when Jack did.  She didn't read until the 3rd grade.  Surely there were times in which life seemed rough in the Grandin house, but look at where Temple is now.  She is giving hope to so many and has made a successful life and career for herself.  

I have to remember that these are just bumps in the road.  That there is light on the other side.

Thanks, Temple.  I needed that encouragement.


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

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

Tuesday, June 18, 2013

Two Down, Two to Go

I swung by the office on the last day of school and picked up Wil's meds from one of the secretaries. "Two down, two to go," she said. "Can you believe how fast that went?"


No, I cannot believe how fast the last two years have gone, and I am pretty sure the next two will fly by equally fast, if not more so.

Wil's friend, Jack, had an end-of-the-year party for the kids and teachers in Wil's program, which just wrapped its second year in operation. Jack's mom, Patty, and I regaled the teachers with all of our various back-up plans if this program hadn't have gotten off the ground, or if, God forbid it did, but our boys weren't accepted into it. We had plans A, B, C, D, and E. One plan even involved us taking up residence in the Seattle area. As I looked around at the teachers gathered there, the kids from the first cohort and the kids from the second, as I imagined the party a year from now with kids from the third cohort, and a year after that the kids from the fourth, I almost cried with the joy of a realized dream. A dream that took years, and at times felt like moving mountains, but a dream realized, none-the-less.

What Wil does in two short years doesn't have the walls around it yet - it's still a dream. I want him to work in a preschool, and he will be volunteering for the third year this summer as practice, as preparation, and perhaps even as a precursor. If the stars line up the way I'm hoping they do, he'll work there part time, year-round, when he finishes high school.

If you ask Wil what he's going to do after high school, he will tell you he's going to move to Anaheim and live in the castle at Disneyland. He is going to get married, have kids, and they are all going to live in the castle. He will work, and his wife will be the "cleaner upper." There are so many obvious problems (and objectionable presumptions) about this scenario, I don't know where to begin. So, I will not begin. I will be present in the moment. I will relish every minute of the next two years that we believe are ahead of us, and I will simultaneously put one foot in front of the other, marching forward, onward, into a future that is not what the past has been, but I trust will be every bit as bright.

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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.

Saturday, June 15, 2013

Autism, and Choices

"He's high functioning."

Many people talk to me about LRE (Least Restrictive Environment).  "You need to make sure your son is in the regular classroom" "You need to make him go there, he needs to develop those social skills."

But what do you do when your son hates the general ed classroom?

He begs to not go. When he does go, he does one thing, like standing on a chair, screaming, something... to get sent back to his class with his fellow autism buddies.

Yet, in the great state of North Carolina... if he's in the autism (AU) class, he's ineligible for a high school diploma. He gets a 'certificate of attendance'. Even if he is on standard curriculum (which he is).

I struggle with this.

He advocates for himself, which I have encouraged.

He doesn't want to be in the general ed class. He wants to be with his buddies who have autism. I get it. He has so much fun with them (even if he is a little toot and takes their stuff so they have to interact with them).

I am stuck.

I want him to be happy, and to be making progress. Which he is, undoubtedly.

But I am dead set on him getting that high school diploma.

He will do amazing things. I have zero doubt in that. But he needs that diploma.

We may be looking into private schools in the next few years, even though *I* work in public schools. A sad testament to the system.
It is what it is, though, and we do what we have to do for our children to succeed.

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Kate is a parent and advocate for her child with special needs. She blogs at Who Turned Out the Lights.

Wednesday, June 12, 2013

Balance and summer vacation

Balance.  That's what I'm striving for this summer.

Balancing summer break for a typically developing child and a non-typically developing child.  Balancing fun and free time while meeting the goals we set for the summer.  Balancing time outside with time spent in therapy.

I've never sat down and actually written out summer goals before.  I've had lists - many lists - of places we want to go, people we want to see, fun we want to soak in.  I'm a list maker, not a goal setter.  This summer, though, my extreme dislike of the phrase "I'm bored" and the frequency that I hear it around here led me to create a few more detailed goals other than Enjoy the Summer!

My older daughter loves notebooks and she had found a few I stashed away and was looking for a reason to write in it so I took that opportunity to have her help create our summer goals and to write them down.  There are 3 major categories with items (in list form, of course!) under each goal.

This summer we will Learn New Things.  For my older daughter this includes all things art which she wants to explore this summer.  We have plans to visit local art museums, galleries, crafting programs and websites.  She also wants to learn to write in cursive so I've picked up a learning handwriting book at the Dollar Store and supplement it with some items from the internet.  For my younger daughter it includes communication goals to increase her use of her eyegaze communication device and changing up some of her therapies in order to better prepare for kindergarten in the Fall.

This summer we will Take Day Trips locally.  This list is extensive and filled with fun ideas and we are constantly adding more.  My plan is to have the girls select one place from our list each week to visit.  We even picked a few places to visit as a family and my husband is working them into his vacation schedule which already feels nicer than the usual "I'm taking off from work tomorrow, what should we do?" discussions.

This summer we will Continue Learning for Reading and Math.  This includes both girls participating in the summer reading program along with attending the fun free activities at our local library.  It also includes continuing working on telling time and money concepts for my older daughter.  For my younger daughter I recently learned how to hook up her communication device to a laptop computer so she can learn to start "writing" as part of pre-literacy.  I'm planning on working with her on that a little bit each week along with working with her to learn and execute on multiple-choice questions using her talker.  I think learning to pick an item from a multiple-choice list will go a long way in understanding her current reading ability and comprehension and help better prepare her for kindergarten.

All this initially sounds a little too structured for my idea of summer but in practice it only takes up a fraction of the time we have available.  There will still be ample down time, swim time, camp, playing with barbies, bike rides, family movie nights, getting together with friends, etc.  All the standard things our family associates with summer.

After all, I'm striving for balance.  Check in at the end of the summer and I'll let you know how it goes. In the meantime, feel free to share in the comments section goals you have for the summer.

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at

Tuesday, June 11, 2013

Cortical Vision Impairment and me

I had an amazing opportunity this past week.  I got to spend time at a Cortical Vision Impairment(CVI) convention.  It was three days of action packed learning.  I took notes, got a book, and tried not to be jealous that I didn't win glow eggs or Slinky's.  More on that later.

But I really wanted to take some time and share what I learned.  These things don't just have to be for CVI.  You may find use for them with your own SN kiddos.

But first before I start a disclaimer.  I am not a doctor.  I cannot diagnose or treat your kids.  This is advice.  You should always take your child to a doctor first.  Of which I am not one:).  I will however make house calls with home made baked goods (I am from the south after all), a chick flick (Crying is therapeutic), a beverage of your choice, and a shoulder to cry on and ears to listen.

So that being said here are some of the top things I took away from the conference.  The first was that you should get some books.  I would start with Little Bear Sees by Aubri Tallent, Andrei Tallent, and Fredy Bush.  It is sort of an ABC primer of CVI.  You can get it on an e-reader and I had it read in two days.  It gives ideas, tips, and hope.  After you have read that and feel like you have digested the info get Christine Roamn-Lantzy's book Cortical Visual Impairment:  An Approach to Assessment and Intervention.  This is the Harvard version of CVI.  I have had the book for a week and I am on Chapter 2.  Of course my son is out of school and every time I pick it up he has a splinter, tick, or is hanging from my curtains.  So I have a feeling I will be reading this until her new updated book comes out.  Yes she is updating her book.  No, I'm not sure when.  But I really feel that you need to read this one.  The book has forms and most important (to me) teaches you the scale.

Yes, there is a scale.  CVI kids are either phase 1,2, or 3.  The book teaches you how to scale your child and what activities are most important to do within each phase.  Children with CVI CAN IMPROVE!!!  But it is not magic.  It is work.  Hard work.  As a parent you need to learn to use the scale so you can help your child.  Plus, if you have others scaling your child they may be way off.  The good news is that everyone at the conference can scale pretty well so if any one of them came to see my daughter I would feel good about letting them scale her.

Now each phase has different things that you can do.  Phase one is the most basic phase and the child needs a controlled environment.  You want to train those eyes and brain to work.  Let me show you some of what I do with Cary.  This is the part that other SN families may like too because I feel that you can do some of this with other types of disabilities.

The first is a light box.  You can get one off of amazon, make them with ideas from pinterest, and if you have a cool vision person they can hook you up.  We place basic shapes in red, yellow, and blue.  Why?  Because those are colors Cary can see and she is a light gazer.  We spend time at the light box pretty much daily.

We also have a basket of objects Cary can see.  I keep it handy.  If your child sees red well, fill it up with pinwheels, balloons, Slinky's, red mardi gras beads, you get the idea.  Here is our box.  Surprise, guess what color Cary likes?

Inside the box we have all sorts of fun objects.  It is a little empty now (did I mention my son is at home;) ).  But you get the idea.  

One thing that kind of crushed me was books.  I am a teacher.  I say read read read.  But CVI stage 1 kids can't see pictures.  There are some exceptions, but pictures and faces are meaningless to them.  So the books I thought Cary loved are books she cannot see.  Does that mean we stop reading books?  Oh, heck no!  I still read them.  What Cary loves is the sound of my voice.  But I wanted more.  I remembered what I had learned that simple shiny or textured shapes would catch their eye.  So I made a book with chipboard and shiny paper.

Tah-dah!  Now I am not expecting any awards for this one, but it is simple, quick, and Cary bats at it every time I bring it out.  I also have re purposed furniture around my house.  I have a small home and space is a commodity.  So we have a main room.  Don't be afraid to be creative.  I took some old Cd's and taped them to a chest.  Shine a light on them and place one baby in front of it and you have hours of fun.  You can touch Cd's, kick them with your foot, and try to pull them off.

You also can get some really great double takes from visitors:).  Another favorite is Cary's "vision room".  I took a black tri-fold board that you can get at a craft store, stuck some tap lights and a black towel under my desk and viola!
Cary has a darkened sensory room.  It is really important for CVI kids to have a chance to focus on objects in a quiet area.  Dark with a few lights that highlight the activity you want them to focus on.

Another important thing is mirrors.  I have one I drag around.  The light and reflection attract Cary and she enjoys spending time in front of it.  Have a portable mirror.  Or buy one for every room.
Another great thing for CVI kids is an Ipad.  If you can get your hands on one of them and prop it up there are really great apps out there.  I got the list dejour from the convention.  Are you ready for some great apps? Some are geared for different generations but here is the list:
Baby Finger
I Glow Stick Pro
Bright Start
Baby Patterns
Infant Visual Stimulation
Big Bang Pictures
Rim Shot
Peek a Bouncer
Musical Hands
Guitar and Xylophone apps
Music Sparkles
Tappy Tunes
Rattle Drum
Bert's Bag
Talking Larry
Tap and See Zoo

Keep in mind that depending on your stage, age, and latency(how long it takes your child to look at an object) that not every app will be for your child.

If an Ipad isn't an option you could also use a lava lamp, or get a red beta fish, place in a clear bowl, and put it in front of a black area.  Another thing.  Wear black.  Get used to looking like the living dead.  You want the child to focus on the object you are presenting to them.  So if you wear a dark shirt or outfit the child will focus on the nice shiny object you are presenting.  Oh and don't talk a lot.  Silent presentation is the key.

So are you feeling overwhelmed yet?  I hope not.  These are just some things I took away.  Give your child an opportunity to work with their vision in your everyday routine.  Have fun with it.  If you are having fun and relaxed your child will be to.  It doesn't have to be perfect.  Children are very forgiving.

There is one more thing I want to share with you.  It is probably the most important thing.  All the people of the convention had fancy titles.  Like PT, OT, AT, Phd's and all that fancy stuff.  They were very proud of them.  But I trumped them all.  I have the most important title.  I am a MOM.  These people will come to your home tell you what to do, when to do it, who should do it, but at the end of the day they go home.  I live with my child.  I know what makes her laugh, cry, and the beat of her heart.  I am my child's advocate.  You are the most powerful person in YOUR child's life.   You are their voice, their advocate.  If you don't advocate in your child's best interest they can run you over.  Don't let them.  Stand up, speak up.  We need to advocate for our children until they are able to do so for themselves.

One more thing.  Always have hope. CVI is a new and changing field.  There are new breakthroughs every day.  Your child is a miracle and can live a happy life.  It may not have been the life you had planned for them, but are you living the life that your parent's planned for you?  Live your days in hope and don't ever give up.

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Amy Fields is a mom, blogger, gardener, and special needs advocate.  You can follow her families adventures on her blog at Many Kinds of Families

Sunday, June 9, 2013

Seize the Brutiful

My son's recent birthday has me thinking about milestones and landmarks and such.

He turned nine -- halfway grown. Halfway grown, going in to fourth grade. For the better part of two decades I worked in a school that held K-3 in one building and grades 4-6 in another, so I always thought fourth grade meant "big kid." 

I'm forty-one, I've lived close to half the length of my grandparents' lives. They were my heroes and I miss them.

My daughter turned just turned seven.  My grandma has been gone now more than half my little girl's life, and she never met my grandpa.

In a year my son will be the age I was when my father left my family for good. Unthinkable to leave my babies... and they are still, for sure, my babies. 

In college I dated a boy who made the mistake of wondering aloud what if we got married? I laughed without thinking and hurt him when I said I had no intention of getting married, and certainly not so young. He married the next girl he dated, and now has a son about to go off to college. I see his son's photo on Facebook and cannot grasp it. At all.

This weekend my husband and I will celebrate eleven years of marriage and thirteen years as a couple. He looks, to me, pretty darn close to the way he looked the day I met him. Okay, so he's a little bit cuter now. But he was plenty cute then, beautiful enough in looks and in spirit, that I thought, ever since the night we met, he might be the perfect person at the perfect time to ask me, "What if we got married?"

And when he did ask me? You know I couldn't trust that much goodness without double checking it, and so I negotiated, and I said, "You know I want kids, right? You know I want more than just one, right? You know I'm complicated... " And he told me, as he has since the beginning, "Oh, I know all about you..." And he does. And he told me, as he has since the beginning, "Why don't you just let yourself enjoy the happiness? It's okay! Let's enjoy it together!"

J has always said, "Enjoy the vigor of your youth! Enjoy your vigors! You will never be younger than you are today!"J has always said it's okay to be happy, and he has always offered to hold my hand if being happy scares me too much.

In our early days, we used to hang out in front of mirrors and smile at the reflection of our arms around one another, the way we kind of resembled one another in a way, and how we could never stop radiating our joy at finding one another. We held hands as we walked ourselves down the aisle.

Now we sit and marvel that we aren't those young twenty-somethings anymore, as we exchange neck rubs and swap complaints about our aches and pains. It can look, for all the world, like I'm disgruntled. I totally get that. I think sometimes I can appear somewhat ungrateful and negative and very, very tired.

Because it's been nine long years helping our son navigate autism, asthma, ADHD, ocular torticollis, night terrors, and food allergies. It's been harder especially since I haven't had my heroes, my grandparents, to guide me through life's challenges anymore, challenges of raising a little diva, or going three and a half years straight without any sleep. I'm road-worn.

But at the same time, my son's recent birthday has reminded me, as birthdays do, of the gratitude I feel for every candle on every cake, gluten free and otherwise, and every day, good or otherwise, in between. Glennon Doyle Melton of Momastery says life is brutiful. I get that, I really do.

(Recently I stumbled across a blog post by someone all full of self-righteous indignation toward Glennon, taking her to task for not wanting to be all cheerily carpe diem 24/7/365. I think that blogger really just wanted to feel superior. Who knows, maybe I'm being very ironic and superior myself, calling out someone else here, but that is not my goal.)

What I'm trying to say is that my son's recent birthday didn't have me thinking life is perfect, or life is terrible. It has me agreeing with Glennon that life is brutiful, and we can do hard things.

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

Wednesday, June 5, 2013

Excitement & Adventure!

Life.. la, la........laaaa, la, la!

It's a new month.

It's going to be a busy one.

It's going to go fast.

It's exciting and fun and scary.

It's going to be so good!

I haven't seen my mother for two years and she arrived yesterday!

We have six weeks together. Fingers crossed that I don't drive her crazy! 

Toes crossed that I don't swear at her. It has been known to happen! :)

The husband is going on boys trip with our first born.


I can't quite believe it......

We (as in, me and Mum) are taking my other boy on a plane trip, his first in ten years!

Two years ago I set myself a goal. "I am going to take Nick on a plane". 

Our Nick, who just happens to be on the more severe end of the autistic spectrum. Our boy who loves his home comforts. Our kid who used to really hate going anywhere new!

We leave on July 1st. Our flight is going to take two hours. I will need to hire a car at the other end. We then drive for an hour to our destination and will be staying there for three nights! New place, new bed, new EXPERIENCES!

Nick is ready.

He no longer needs a regular routine.

He is flexible, adaptable and all those other lovely words that describe how far he has come.

He trusts me.

He is very ready.

So am I.

I know that together we will manage the zillion and one changes.

I may need a stiff drink at the end of the day, however, Nick will be there sitting in the seat next to me.

I remain hopeful that my Mum can cope with the challenge!!

Wish us luck! x

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Di has a relatively easy time raising two teenage boys, one who happens to be autistic. She blogs over at the Bright Side of Life. If you are a fan of facebook you can find her HERE!

Monday, June 3, 2013

10 tips for better hospital stays

My blogging engine lets me look at what people type in when they travel to my site and along with the “floortime” “floortime mama” but then some make me very sad “Husband wont accept  autistic child” “ “Child wont talk” and I feel such kinship  for the lonely fingers typing those words on another end of the internet

These days some people who arrive on my blog arrive after having typed in “hospital visit for child ” or Crohn’s

When we were first getting admitted to the hospital in February – I hunted for a something on the internet on how to prepare for a hospital stay. I really found nothing suitable

 So here I write this post specifically for you -unknown mum or dad -about how to make a hospital visit more bearable

Since R goes for infusions on a pretty regular basis, DH and I have the dubious distinction of some expertise in this area

1.       Explain why and keep it simple  When possible explain simply why you are at the hospital. We told R simply that we were there to make his belly hurt go away . That the doctor needed to look inside his tummy to see what was wrong

2.      Be aware that your child is hearing what you are saying. We found R looking up “Crohns disease in children” and “Remicade” on Wikipedia. These are not necessarily what you want your child to be reading

3.      Make a schedule and tick things off on the schedule. Most of the time children do not get why they are in the hospital or why things are being done to them. When things are being ticked off a list, it makes them feel like progress is being made and an end is in sight. Its important to highlight when they are going home.

4.     Bring some home to the hospital. Take their and your ordinary clothes with you – I know R found my tatty nightgown and snuggling up with his bedtime story book – a signal that things were okay and ordinary – even though things were far from ordinary.

5.      Go to pediatric units – Pediatric nurses are the finest creatures in the world and they think of things like kiddie videos that regular nurses won’t think about

6.      Reserve treats for Hospital Day If you need to go on a regular basis to the hospital do some special things that are reserved just for hospital day . In our case, we eat pizza at the restaurant , do elevators, watch some special DVD’s, unlimited video games

7.      Don’t cry in front of your child. Seriously, no matter how hard it is

8.      Prioritize physical comfort. Example if your child needs an IV, a nitrous procedure  is very relaxing,  Numbing cream can make all the sting go away. Make sure your child is warm.

9.      Distract your child – The hospital where we go to have a Wii Console – Every other visit, R has whined about getting the IV out and being “all done”. This time since the Wii had many new games, there was not a peep out of him

10.   Treat your child the way you want others to treat him. Most of us are really good advocates for our kiddos. But I think we need to go one step more than that. We need to treat our child with a special tenderness, treating their fears with respect.

This means for example that when a nurse jokes “oh he is going to fight that IV”, we don’t smile along with them. If you think about it – these sorts of statements are deeply disrespectful to our kiddos. Now I say something like “I would too if I did not understand why”.

Even though they did not mean any harm in the first place – there is a subtle shift in the energy of the room. R does not feel like mum and dad and nurse are on one side and he is on another. And the nurses treat him differently

Hospital stays are never fun. But I hope these tips make them a little more bearable  

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Floortime Mama writes about love life and autism at Floortime lite Mama (

Saturday, June 1, 2013

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Be Like A Scout…
“Be prepared.”  We’ll use the Girl Scout motto (and not get into the current Boy Scout controversy.)  I always joke that every six months when we go back to Children’s Hospital we get a new diagnosis.  Well, we haven’t had that 6 month interval in quite some time (10 hospitalizations and counting).  But last time we received 3 new diagnoses, 2 of which could be potentially life-threatening.  Sooo, they sent us home re-trained in CPR and emergency medication administration...
I say re-trained because I was CPR and First Aid certified annually from high school until ironically I had my medically fragile child.  And some techniques have changed so it’s good to be current.  The hospital may even have training on site before you leave.  I think it’s a good idea for parents of special kids and their caregivers to know CPR anyway.  P.S.  I didn’t know when I wrote this that it’s CPR and AED (automated external defibrillator) week June 1-7.

“You must always remember, you are braver than you believe, stronger than you seem…”-Christopher Robin

Before leaving the hospital, it’s a good idea to ask the doctors how to tell if it’s an emergency.  My daughter had her first ever seizure and coded.  We decided no matter what the first time at home we’re calling 911.  Besides cellphones w/ speakers, our home phone and fax machine have speakerphone capabilities so we can talk and tend to her at the same time.  We figure it’s safer to have medical personnel check her out than for us to try to guess.  If your doctor gives you emergency meds., you’ll have to remember to bring them everywhere.  We even put a sticky note on the inside of the front door in fluorescent pink with just the name of the medication on it.  

Also, we didn’t think about how to give emergency medication (rectal) in public.  So what happens if we’re not home?  I read in Exceptional Parent magazine that for privacy some families use those emergency Mylar (yes the same stuff used for balloons) blankets that campers use.  I’d never heard of it before, but they fold up 1 x 4 inches, so I put one with her meds.  I actually found them on Amazon for like $1 each.  What a great idea!  Whatever your child may need outside the home that could be personal, this helps maintain dignity.

Something else we didn’t even think about is how to monitor her at night with this new development.    There are several products on the market but nothing had been “approved” so far, so we’re sticking with one of those sensitive baby monitors that even detects breathing.
You’d think I’d get used to these curve balls but I always feel like I’m starting back at square one with a new child.  I have to remember that she’s still Stephanie.  But it’s easier to handle if you know what you’re dealing with so again I spent time researching the new conditions.  It’s so much easier now with the Internet than phone calls and waiting for packets to be mailed, though sometimes it’s good to be able to ask a human being questions.  Just make sure you’re getting information from good, reliable sources.  

You can’t control everything, but having a Plan B just in case can help families deal with a crisis better, and give their child the best care. 

Remain hopeful,

CPR training:
American Heart Association

 Red Cross

You can also check with hospitals, fitness/wellness centers, county colleges, and evening adult classes. 

Exceptional Parent magazine
Note:  you can also get condition specific information in their annual resource guide.  Call (800)E-PARENT for one free copy.

Health info on the web:
American Academy of Pediatrics

 Health Central

 Kids Health

Maternal/Child Health Bureau Knowledge Paths


 For technical/professional information, search on Google Scholar for journal articles and latest research.


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