Friday, September 28, 2012

The Coveted Commencement of The Magic Season

It's September and back-to-school time here in New England. For most of us, this usually means a trip to Kmart for some running shoes and school supplies.

But for my son, Nicholas, this fall month is far more significant than just a time for buying some notebooks and colored pencils. To him, September is the official kick-off to...The Magic Season.

What is The Magic Season you ask?

It is that time of year when you can officially begin to decorate the home with all things cozy and warm. It means that you can light candles and plug in things that glow. It is the official start to months and months of twinkling lights and holiday decor.

To Nicholas, however it means just one thing, happiness.

Yesterday, we drove by our local farm stand when suddenly I heard a scream from the back seat,

photo from

Sure enough, as we passed Paisley's Farm, rows and rows of bright orange pumpkins lined a long, wooden table.


Typically buying a pumpkin in the middle of September doesn't pose a particular problem. The colder evening temperatures here in New England, help to preserve the freshness of the gourd-like, giant squash. Unfortunately for Mom however, Nicholas insists on carving it right away. He delights in quickly gutting the poor unsuspecting vegetable so he can place a lit candle directly in its belly. He will watch his cheery little friend for hours, and will carry him wherever he goes.

But as you all know, the shelf-life of a carved pumpkin is two, maybe three days, tops, and then the once grinning gourd now becomes a rotting, smelling, moldy piece of pulp more suitable for the compost pile than the bedroom nightstand. The ever-tolerant Nicholas however, accepts his faithful friend as he is and disregards the decaying nature and God-awful smell that accompanies him.

Usually, I try to avoid passing Paisley's or visiting shopping malls until at least mid October, giving us only a few weeks to collect our gobs and gobs of grinning ghouls and goblins. But this time, however, I blew it, I failed to redirect my route and unknowingly tipped off my son too soon to the coveted commencement of The Magic Season.

"CAN WE, CAN WE MOM, CAN WE GET A PUMPKIN?" Nicholas asked excitedly.

"I'll tell you what," I said, "You have a good day at school tomorrow and we will get one."

"OK!" he said absolutely positive that he would be triumphant in earning the iconic reward.

Sure enough, the next day Nicholas behaved beautifully in school. So, it was off to Paisley's we went in search of the perfect pumpkin pal. He chose a small somewhat oval little friend.

At home, he carefully drew a smiling face on the front of the pumpkin and had Daddy perform the delicate seed removal operation. Nicholas placed one of his thousands of candles inside the hollowed orange squash and voila...

The Magic Season has officially begun!

I wonder if anyone has invented a pumpkin embalming kit yet for parents of children with PWS?

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Lisa Peters writes at To hear more about our interesting adventures coping with the effects of Prader-Willi Syndrome, epilepsy, ADHD, Asperger's and good old family life, please come visit our blog.

Tuesday, September 25, 2012

Birthday Milestones

Saturday is my daughter's 11th birthday. She'll be camping with her dad at a special Girl Scouts camping weekend, so we are going to celebrate it as a family when they get back. I'm sure she'll want breakfast for dinner and chocolate cake or maybe frozen yogurt at a specialty shop.

Next week eleven years ago a doctor looked into my tear swollen eyes and said, "Take her home and love her as long as you have her."

That. We have done.

Quinnlin was diagnosed at two days old with ARPKD (autosomal recessive polycystic kidney disease) and at the time there was little hope given for babies born with this disease. Many doctors thought all children with it died at birth or shortly after birth. In fact statistic say that 70% babies born with it survive.

I remember there was a statistic at the time that said if babies with ARPKD made it to their first year they had a good chance to survive until they received a kidney transplant (by age 10 most kids would have them). So, that first birthday was an important one. And well, her 8th birthday was a big one too, as it was the day of her kidney transplant.

The birthday milestones are great, but not so important as the everyday milestones. Looking at me in the eyes (3 months). Lifting her head (8 months). Sitting up (13 months). Pulling up to stand (20-some months). Walking independently (3 years). She jumped on two feet at age six, and so on.

To me, it's not even that she did those things at a certain age (although all of her therapists thought differently), it's that she did them at all.

So we'll celebrate my girl's birthday like we always do and we'll talk about we can't believe she's almost a teenager. Later that night when our house is quiet, I'll be thinking about how lucky I am that she is here and I can witness her milestones of living.
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Julia Roberts blogs at Kidneys and Eyes and is site co-founder at Support for Special Needs.

Thursday, September 20, 2012

Bubbles and Baby Steps: A Story of Autism and Joy

If I were to have to pick the one thing that is absolutely unique to being a special needs parent, it would be how the little milestones creep up on you, overwhelm you, and leave you filled with gratitude for the wonderful gift your child was just given.

It was a Wednesday - an ordinary Wednesday that was desperately needed in our household.  We were coming off of a week filled with a sibling's wedding, which meant extra social demands and scheduling changes for my boy.  We had a meltdown here and there (who knew that barely audible church bells would cause such a sensory reaction?), but all-in-all I called it a victory.

Wednesdays are always a two-therapy day in our house, with back-to-back speech and OT.  Honestly, Jack's schedule is so jam-packed that one day has to be the sacrificial lamb of over-scheduling.  Wednesdays just happen to be that day.

We entered the clinic with little fanfare, which is a positive in and of itself.  Jack's SLP comes out to get Jack, but his reaction isn't ideal.  He doesn't scream (another plus!), but he doesn't exactly engage, either.  He doesn't respond to her prompts for a greeting and keeps his back to her as she suggests all of the wonderful things they might do in the therapy gym (Swing!  Slide!  Crash!) and Jack reacts negatively to each (No!  No!  NO!).  His attention is off and he's struggling to listen to his therapist - nothing new, really - but I'm not hopeful for a productive session.

I spend that first hour catching up on emails, catching up on blog posts, and all of the daily management tasks that the wedding placed on the back burner.  In time, I look up to see Jack's SLP standing in front of me.  She says he had a rock star day.  Ever the optimist, she always says he's had a rock star day.

It's the account she gives that takes my breath away.

First, some background; my son was - for a very long time - unaware of children in his space.  Even now, his awareness wanes.  He seems to be able to have some awareness of other children when he's a distant observer, just watching what they do.  He'll even smile while watching their antics.  However, when a child gets too close, he shuts down.  He's been hit and toys have been taken from him all as he stands non-reactive to child who is assaulting him.  It's as if other children are fascinating creatures to be studied from afar - their movements watched at a distance - but they are too erratic, too unpredictable, too uncontrollable to engage with further.  His tendency is to shut down.

In fact, each evaluation and re-evaluation Jack has had says the same thing:

Jack has yet to be observed to spontaneously initiate interaction with a peer.

Until today.

Jack came into the therapy gym and engaged in a brief sensory-motor activity with his SLP, as is the norm before the onslaught of feeding in the second half-hour of their session.  As his SLP was preparing for the next activity, he saw another little boy and his OT in the gym.  This little boy, who is just a few months older than Jack, was engaging in one of Jack's favorite activities - blowing bubbles.  It's an activity we do often with Jack during our in-home Floortime sessions.  Jack cannot blow bubbles himself, so it's an ideal activity to illicit some circles of communication (for those of you Floortime folks out there).  Jack's tendency would have been to hang back, flap his hands, and watch the bubbles from afar.

Until today.

Today, he toddled over to the other little boy, looked him right in the face, and said "bubbles".  The other little boy was more than happy to indulge Jack in his desire for more bubbles and Jack was the gleeful recipient of a bubble blast.

That little exchange might not seem so Earth-shattering to the average person, but it moved mountains in our world.  My boy just spoke to another child - unprompted - for the first time ever.  He initiated interaction with another child.  He was so motivated by blowing bubbles - one of his absolute favorite things to do besides play with letters - that he spoke to a peer.

Honestly, I don't know if he was requesting bubbles or not.  He's a big labeler, so he would be just as likely to label them as bubbles as to request them, but really both the request and the label sound the same - "bubbles".  I really could have cared less what Jack said to the little boy.  He could have said "Super Why!" for all I cared; the important thing was he said something - anything - while looking at another child.  He said something directed to another kid.

So there I sat listening to Jack's SLP convey the absolute beauty in this exchange, and the tears began flowing freely.  I felt self-conscious at my own outward show of emotion, but she gets it.  She's seen Jack struggle and she gets how significant that one little word truly was.  It was a word - an interaction - that has been so hard fought for and has involved the sweat and tears of so many.

I convey how difficult this past couple of weeks has been.  How I've seen other children - even other special needs children - my boy's age or younger who were doing so much more, who were interacting with other children and far, far more verbal.  It is in those times that fear creeps in.  It's that same fear that I felt when I first heard the word "autism" as a diagnosis for my boy more than a year and a half ago.  More so than any of his other diagnoses, it's the one that broke my heart initially.  My heart broke because I feared that my angel, who I think is the most wonderful person on Earth, would never have a friend.

It's that same fear that gets fueled when I go to pick my boy up from school.  I look over on the playground and see him opening and closing the play house door or the lid to the play plastic grill while the other boys are riding around in a pack on Big Wheels or playing together in the sandbox.  He's alone and content to be that way, but alone.  It doesn't hurt him, but it hurts my heart.

So on this ordinary Wednesday the extraordinary occurred.  It occurred in a clinical setting in a sensory wonderland, but it occurred.  My boy made his very first attempt to reach out to another child and the tears of gratitude flowed from my eyes.

When my boy came out an hour later with his OT after having a bit of an episode during his session, I temporarily blocked out his OT's reports on the fine-motor struggles and behavioral issues to give my baby boy a hug and a simple acknowledgement of exactly what he had done...

I am so proud of you.

And I was.  I am.  I am prouder of my boy than I can possibly express.  I don't know what the future holds for my boy, but it's these little milestones - these glimpses of progress that are fought for by so many, including my boy - that fill my heart not with fear but with joy.  Overwhelming joy and hope.

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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.  To follow more of her ramblings, like her on Facebook!

Wednesday, September 19, 2012

Getting Back Into The Swing Of Things

I began posting here in May, and every post I've written here has been about the twins' school.  Today is no exception.

You see, since the last time I wrote, school has begun.  Ballerina and Music Man have started kindergarten.  Music Man is in a similar setting to what he's used to.....a group special education classroom with group activities and learning.  Ballerina has joined a general education kindergarten class, after coming from a one-on-one ABA-based preschool setting.  And we've been watching her learn to acclimate to this new environment.

I was so nervous going into the first day of school.  Ballerina is a handful for anyone who she hasn't already sized up.  We are very fortunate......her teacher has the well-earned reputation of being the firm kindergarten teacher that we know (from experience) that she needs.  But that same teacher is also responsible for 16 other kindergarten students, and kindergarten is a HUGE milestone for any child.  Even if they have been going to full-day day care from the time they were 6 weeks old, in day care, there is a great deal of play time.  Not in full-day kindergarten.  Kindergarten around here is what I think of as first grade for my generation.  By the end of the school year, these children must be able to read and write, they must be able to do some basic arithmetic.....or else they haven't met their requirements.  Most children come into kindergarten with some (if not all) of these skills.  Ballerina is in that group (she can read quite fluently, although there is an issue with her comprehensive skills).  We believe this contributed to her placement into the general education classroom setting.

Since school began on August 27, we have been seeing quite a few issues that concern me.  She is slower than her classmates at following the class rules and seems to spend time every day in "Time Out".  Most days, this simply translates to her taking a moment to collect herself before she follows a requirement laid out by the teacher.  Her refusal to cooperate lands her in time out, because as we have told the teacher, she needs to be taught that she cannot dictate the actions but must follow the teacher's instructions.

But at what point are we wrong?

I believe that children should be pushed, but there is a fine line of when you need to simply lay off.  Have we crossed that line here?  Are we expecting too much of her?  Was she placed in general ed because they didn't want her in the same classroom as her twin brother?

When I sat in that placement meeting at the end of last year, it was made very clear to me that general ed was DEFINITELY where she belonged, but we all understood that it was going to take time for her to acclimate to the new setting and new requirements.  That has certainly shown itself to be true.  She has never been sent to the principal's office, but when I was in the building doing something for the PTA (copying the bi-monthly newsletter), I heard her crying as I was leaving.  Not just crying, but screaming.  She was exclaiming, "No, I don't WANT to!".  I don't know exactly what she was referring to -- it could have simply been about another trip to Time Out.  But I am pretty sure I heard someone take her into the hall to talk with her.  Since I would have been visible, I left at that point, making sure I didn't interfere with the school's authority in Ballerina's eyes.  But I have to wonder ... is this something that happens every day?  What does that do to the perceptions of the other children in that classroom, who will be her classmates all the way through high school?  Are we handicapping her future in order to give her that boost in the beginning of her elementary school education?

I have been taught that, as a parent, my number one responsibility to my children is to do what I can to help them to live independent lives.  But when special needs come into play, things have to change.  How much?  I won't be available to take care of either Ballerina or Music Man all their lives and Big Brother may or may not be able to take on the responsibility.  They are both bright and are probably considered by many to be high-functioning, even though their diagnosis has never been HFA (High Functioning Autism).  They MAY be able to live full and independent lives and I have to prepare them for it.  And learning how to function in society is a key part of that.

And that's what I'm trying to do.  I just hope I'm not pushing too hard too fast.

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Ilene is a happily married SAHM raising 3 great children.  Big Brother is a typical 7 year old second grader and Ballerina and Music Man are girl/boy Autistic twins who are 5 year old kindergarteners.  Ilene blogs regularly at My Family's Experience With Autism and periodically writes guest posts on SPD Blogger Network, Oxygen Mask Project and Multiples and More, as well as a monthly post here.

Tuesday, September 18, 2012

A substitute for a Teddy Bear? Not!

Last week of August was also last week of Patrik's holidays. On September 3rd was his first day of school. Ever.

But the last week was strange. All his life he never showed desire that he wants someone to go to sleep with him. Yes, we put him in his bed, kissed him good night and we left. He always fell asleep alone. 

The first night that he pushed me onto his bed I was so surprised that of course, I granted his wish and layed beside him untill he fell asleep. The next night it was the same. And the next one. 

The third night when I came down stairs to the family room where my husband waited, I started to wonder if I was a substitute for his teddy bear. He has two teddy bears: white and brown one, but the brown one is the APSOLUTE winner. He goes with him everywhere.

Patrik forgot or left it with his Grandma, who was watching him when me and J. were at our work.

But then on Friday August 31st, teddy found his way home... and anyway - Patrik wanted me to lay down with him untill he fell asleep. At that point I knew - I was not a substitute for a teddy! Yeah!

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Petra is a Writer, Mum of Two, Wife to One, Full Time Employed Woman... Warrior for a better Future for her child with Autism and for the one without. 
She blogs at

Just Stand Against the Wall

Nobody has ever asked me this, but I've got my answer all ready to go. "What's harder to live with, the ASD or the ADHD?" By far, on a day-to-day basis, the ADHD. In the grander scheme of things, and as far as planning for our golden years and Rojo's adulthood, the ASD wins, but for just your general, run-of-the-mill living, ADHD kicks our butts. Th

Just this morning Rojo sang in a VERY loud and falsetto voice, "Pick, pick, pickatell, picka picka tell..." to the tune of "Row, Row, Row Your Boat" for a solid hour. He also thumped his right leg down so often and with such force, I swear to God, I thought the house shook. This starts no later than 6:00 AM (today it was 5:40) and goes until his meds kick in, which on school days, isn't until after he arrives. They have worn off by the time I pick him up.

On the weekends and non-school/working days, we only give him a tiny bit of his meds to get us through the first two, and roughest, hours of the day. Then we let them wear off so he'll eat. And he does. He eats and eats and eats and eats. The whole weekend is devoted to taking him places to get him things he's willing and ready to eat.

My boy is growing. He grew an inch just last week. He's now 5' 10 1/2" and 110 lbs. Skinny. But not as skinny as he has been in the past.

I was thinking about the title of this site: Hopeful Parents. Hope is really the key, isn't it? I've tasted despair, and hope really has it trumped. There were days we never thought he'd ever gain weight - not with his 101 rules about what he can and cannot eat. Not with the appetite suppressant of his ADHD meds. Not with pickiness. Not with the ultra sensory defensiveness.

But he has.

Equally important, if not more, he's growing in other ways: spiritually, socially, behaviorally, academically, emotionally. Sometimes it's hard to see the growth when you're up so close, but it's there. Just stand against the wall and you'll see.

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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. 

Saturday, September 15, 2012

Getting Over It

Today my daughter tried out a dance class for kids with Autism. She loves to dance, and really wanted to try Irish Step, but the studios here are hardcore with their behavior guidelines. It would just never work. So, I took to Google and found a place with classes just for kids on the spectrum.


Katie was very excited to go. I was excited to see her succeed. She has such a hard time in any activity, and she deserves to do something that makes her happy. A place where she is fully accepted.

The class was an hour long, and started off really well. She was participating alongside everyone else, and seemed to be having a great time.

Then she wasn't.

Part of it was her being tired, and probably a little overloaded, after that first half hour. An hour of any activity is just really difficult for K. She tires easily, gets overheated easily, and that makes her pretty unhappy about everything. I saw it coming, but parents aren't allowed in the studio. I so badly wanted to run in and take her out for a break, but I was also hoping she would rebound on her own.

She didn't.

She ended up leaving the studio herself, telling me she didn't want to do dance anymore. She said it was "boring", which is basically just the word she uses for everything. She's used that word for years when she is unhappy. I am not sure she knows exactly what it means, but I know what she means.

(She also told me the class was "lame", which is a new word she picked up from some show on Netflix. Cue me removing the Netflix app from her iPad for a while, since all she seems to do lately is script lines from tween shows. Sigh.)

I sat with her on a bench, trying to coax her into 1)telling me exactly what was wrong (not going to happen, but I try) and 2)trying to get her to go back into the class. There was a time when I would have just packed our bags and hightailed it out of there, but sometimes Katie just needs a little break, and a little push. I wasn't ready to give up just yet.

I told her I would make up a prize box, just like we have for piano lessons, and if she behaves in the expected way (Hello, Social Thinking!), she can earn a prize. Earning something can be a great motivator for Katie.

At first I wasn't sure even the promise of a prize box would get her back into class. Her anxieties started to take over, and for a few minutes she got a bit more upset. Crying. Hiding her face in her legs. I was almost ready to pull the plug...

But, she came back. She worked through her feelings, and went back in. The rest of the class went smoothly, and she started having fun again. Laughing, smiling, participating. She even said she wanted to come back, which is huge.

Now, to be perfectly honest, there is a part of me that feels guilty that she was the only kid who needed a break. The only kid who had some undesirable behaviors, and couldn't make it the whole way through. I even apologized to the teacher, and for a second I was sure she wouldn't be invited to actually enroll in the class. Thankfully, it didn't seem to be a big deal, and I am hoping each week she does a bit better.

I told Katie that she can take a break when she starts to feel upset (instead of just sitting in the class, getting more worked up), and we stopped on the way home to get some things for her prize box, which she was excited about. I am hoping if we go over it enough, she will be able to self regulate better, and we can avoid some bigger behavior issues.

It's still hard to see her struggle. It still stinks to see the other kids having a great time, and be the only one talking her kid off a ledge. Sometimes, even in a place like this, a place for kids like Katie, I feel alone. Like she sticks out, even among other kids with Autism.

However, I know that is for me to get over. I have to accept that if we do something geared towards kids with Autism, I should be able relax and not feel judged. I know it's probably all in my head, but it's still a struggle. My hope is as the weeks go on, I'll start to feel more comfortable. Because, if I am feeling guilty, that sends a message that she is not OK.

And she very much is.

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Jen is the mom of two great kiddos, Katie, who is 8, and Ben, who is 6. She blogs at Still Looking Up, and you can follow her on Twitter @JenTroester


All moms remember their kids' firsts, right? First word, first step, first day of school. Each of these moments is special to a mother. She marks each milestone in her heart, mentally taking a picture of how her child looks and acts.

My firstborn had great difficulty with many of his firsts. He walked and crawled on schedule, but talking took so much longer. Each word he learned took hours of painstaking instruction and repetition.

Because Danny has Sensory Processing Disorder and Autism, there are many struggles he has that other kids don't. He's not mentally impaired, but has several processing problems which makes things, like formulating sentences, extra hard for him. So many skills that come naturally for most kids take practice and therapy for Danny to learn.

Because of these difficulties, each time Danny reached a milestones it was like a small, precious miracle to me. And this is probably the reason why some of the "firsts" that I cherish are not the typical ones you would find in a baby book.

~~First time he left the public pool without having a meltdown.
The summer when Danny was almost three, we bought a pass to our public pool. Dan absolutely loved the water, but hated when we had to get out for the scheduled life guard breaks. And heaven forbid we actually left the pool to go home. The kid screamed and flailed so much that I was scared I'd be reported for kidnapping. Add to that the fact that I was about 6 months pregnant with Charlotte and I almost decided
to quit going to the pool altogether.

Instead, we made up our very first picture schedule illustrating all the steps we needed to take to get to the pool. We added in pictures representing breaks and leaving, and we showed Danny that if he cooperated when we left, he would be rewarded with aBaby Einstein video.

Within a week, Danny was leaving the pool with nary a complaint, and I was practically weeping with relief. This was not just the first time Danny left the pool without a meltdown. It was also the first time we were able to successfully communicate and correct a behavior problem. I can't tell you how hopeful that made me.

~~First time he told me he was thirsty
Like I said, Danny took a long time to start talking. Even once he did learn some words, it took him a remarkably long time to communicate certain needs. Bil and I looked at each other in astonishment when Danny told me he was thirsty for the first time.

~~First real conversation
When Danny was 4, I went on a field trip with his class. That night, I snuggled in bed with Danny and started talking about the trip to the farm. Before this incident, Danny would just listen to me as I talked; it wasn't ever much of an interaction. If he interjected anything, it was most often off topic.

This night was different, though. Danny actually talked to me about the peacocks and corrected me when I said we saw three of them. Then, he talked a bit about the ducklings, his favorite part of the field trip. I had so much fun on that trip with Danny, but my favorite part was talking to him in his bed. Getting a glimpse into his thoughts and feelings was miraculous. And it left me feeling hopeful that someday I would have a full-fledged conversation with my son.

Other less dramatic, but no less exciting milestones:

~~The first time Danny snuggled with me on his own
~~The first time he told me he loved me
~~The first time he ate a grilled cheese sandwich and a hamburger
~~The first time Danny let us cut his hair with the clippers (last week!)
~~The first time he was able to pedal his tricycle while steering

I hate that Danny has to work and struggle so much in order to master many skills. I wish I could make it all easier for him. But if there is one blessing that comes from these struggles it's that I don't take any of his accomplishments for granted.

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Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance reporter for her local newspaper and started a LEGO Social Club for kids on the spectrum last year.  She blogs at Pancakes Gone Awry..

Wearing the Brave Face

First Day of School!  First Day of School!

Usually that is what I am shouting at the kids, with a little extra spring in my step.  I am all smiles, happy that they are back at school, learning, hanging with their peers and teachers. 

Last week, however, I did not feel that way.  I was a nervous wreck. My daughter with special needs was about to enter 5th grade and she was terrified.  

Despite the fact that we met the teachers, she knew the school, had friends in her homeroom, and had a returning Resource Room teacher, she was horribly anxious.  It started the previous week when she announced to the family that  she did not want to go to school.   

Over the years, I have learned how to deal with some of her unfounded anxiety.  I understand she gets nervous about things that make everyone nervous, it's just to a greater degree.  Plus, she obesses and frets over it.  We can usually get by with "let's not worry about it today; it's a week away, let's just enjoy today" and she can shelve it.   We got through that week fairly well.

That morning however, I started to feel her anxiety.  I knew she didn't want to go and that she was still very nervous.  I hid my nerves pretty well, donning the brave face I often have to wear for her, to let her know I was confident everything would turn out fine.  Even when she asked if we could "cancel school" today, I told her "no, today will be great.  It's your job to go to school."  She got ready, but was very quiet.  We made it to school early, snapped the required photos, and dropped off the 2nd grader to his classroom (he of course, was insanely excited for school to begin).

Then we went to the 5th grade hallway and helped her find her locker.  A friend from last year was there too and when C. said hi, and said friend replied with a sullen "hi."  Okay, that didn't go too well, but it's early.  Well, then the friend turned and gave an enthusiastic "HI!" to a few other girls, complete with hugs.  Then a mom took a pic of four girls together while C. was off to the side, watching.  It broke my heart.
Just a side note here: Parents, if you see a kid off to the side, get them in the pic too, okay?  It's not too much to ask, especially since you are the ADULT in the situation and wouldn't want your kid left out.  
Usually, C. bounds into a classroom, acting like she OWNS the place.  Today it was tentative steps, slowly walking to her desk, clutching her backpack like her life depended on it.  A girl sitting next to her, who was in C.'s class in 3rd grade, said hi.  Claire smiled a reserved smile.  She was clearly nervous.  We left quickly, not wanting to disrupt class.

I am not a cryer, but the tears were falling the moment we got into the car.  Thankfully the spouse was there to tell me everything was going to be fine, it was just the first day, etc.   Then I called my BFF and we cried together.  I was a bundle of nerves all day, waiting for the bus to arrive.

When she stepped off the bus, she was all smiles.  A GREAT day, she said.  And it's been that way since. 

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Jennifer Giroux is a mom to 3 children.  Her oldest, "C." was diagnosed with hydrocephalus at 18 months.  She writes about all things related to special education and living with a family member who has special needs.  Read her blog at

Friday, September 14, 2012

Not Sweating the Not So Small Stuff

I have two kids. My five year old, Moe, is autistic and non-verbal. He is smart, capable in his own way, but he is not what you would consider "high-functioning." My daughter, Jelly, is three. She is typically developing and quite precocious. She breezes through milestones with the greatest of ease, surpassing Moe in all those ways that people who track such things tend to care about.

Moe is not potty trained. Neither is Jelly - though she's almost there. As she approaches three and a half, she would be considered "late" by many of the milestone books. But honestly, I don't care all that much. I mean, sure I'd like to stop giving the college fund to the Huggies corporation and start giving it back to the local community (nail salon).

I've seen so many parents stress about getting their kids potty trained. They use elimination communication (EC) so their kids are practically born using the potty. The record, I believe, goes to one Oliver J. Lexington whose first cry had the distint sound of "potty" to expel his first meconium. 

Now, I'm not one of these parents that believes our kids will "tell us" when they are ready for each milestone. I weaned my kids when I wanted to, I set their bedtimes, and limit their screen time to no more than 30 minutes (margin of error +/- 3 hours) per day. But for potty training, I didn't see point in hurrying. Jelly's preschool doesn't have a potty requirement (I made sure of that when I signed her up) and I figured she would just start doing it when everyone else did.

So I didn't stress about it (even though stress is my natural state of being). I still have a five year old who shows very little sign of potty readiness. We do see occasional signs, and will sit him on the potty so he understands the concept. But Moe's communication challenges are significant, as would be the effort required to teach him this skill. And I'm just not sure it is worth it right now. He's got other things to learn, and this isn't something I feel like spending a lot of emotional energy on (his or mine) right now. The right time will come, and I hope I'll know it when I see it.

It was a similar thing with choosing a preschool. Finding the right school for Moe has been close to impossible. After two years at our public school district's autism preschool special day class, we determined that the program was not working for him. We searched to find a non-public school that would be a good fit. Now, three weeks into it we are questioning this program and considering returning to a home program. It is hard, and this decision matters.

When we chose Jelly's preschool, I had an idea of what I wanted: developmentally based, would accept two year olds, and didn't have a potty training requirement. I went to a Jewish nursery school when I was a kid, so I started there. I did a little research, looked at a couple of schools, and chose one. She has done great there, but honestly, I think she'd do great anywhere. Parents stress so much about this decision, and it just isn't worth it. I'm not saying it doesn't matter at all, am not trying to be dismissive, but the truth is, it's preschool. In the scheme of things, it isn't that big a deal.

It can be challenging parenting two completely different types of kids. I learn a lot from Jelly, see how things are "supposed" to be (according to the books, anyway). I never even understood half of the questions on Moe's assessments until I saw up close how a typical kid develops. She just absorbs the world and makes it a part of her, where we have to teach Moe everything in painstakingly slow detail. But sometimes having a kid with special needs helps me parent my typical kid too, by helping me focus on the important things, not sweating the small stuff, and maybe even not sweating some of the big stuff too.

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Jen also writes at her personal blog, Anybody Want A Peanut? You can follow her on Facebook.

Tuesday, September 11, 2012

Wins and Losses.

The past few days have been a rollercoaster of emotions.

My son was so excited about taking karate classes. We signed him up for a 2-week trial. He had a pretty good experience last week, and when he asked to go again yesterday, I was so happy. He found something he liked! He has never, in his almost 7 years of life, asked for a class before a few weeks ago. (Awesome, right? Progress!)

So he went to class.

It was a DISASTER.

I literally picked my son up off the mat half way through the class. While the 3-5 year olds were happily following the instructor's lead at punching and kicking, my 6 year old (who I placed in that class because I thought it would fit him better) was rolling on the floor.

The walk of shame wasn't as hard this time. I have grown a thicker skin. The greater disappointment was that he liked it, but was unable to do it. Sometimes it's so hard to not get frustrated when it seems so simple.

 My daughter had her class, and then we left. As we were leaving, the instructor chased us out. Imagining what the ensuing conversation would be, I immediately assured her, "Don't worry, I won't bring him back. I know it was awful." She spent the next 5 minutes telling me she would love to work with him 1:1 until he can handle a group class, and asking me questions on how to reach him better. I was stunned that her reaction was so far from my expectation.

My son has also been begging for gymnastics classes. My daughter takes classes at a local gym, so I asked there. I was surprised to find out that they have never worked with any special needs child before. I was equally surprised when he offered to do a trial class to see if my son liked it and they could work with him.

After yesterday's karate fiasco, I was dreading today. I had to send him with my husband to his class, so I had to keep texting him to see how it was going.

Guess what?

He did AWESOME. He loved it.

I guess when your kid finds something they love, you just know.

I'm crossing my fingers he stays interested in gymnastics. It is so great that he wants to do something. We're still considering the 1:1 karate lessons, because he seems to like it, but is just unable to handle the class right now.

The wins this week definitely outweigh the losses. And I'll be (really) happy with that.

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Katie is a mom to two awesome kids, Grace and Graham. Graham also happens to have autism. When not blogging at Hopeful Parents, Katie blogs at Okay, Who Turned Out the Lights?

Darkest before Dawn

So I had really planned on having this wonderful, heartwarming, mushy first post of family life at our home. I had planned on browbeating Shannon to get the picture function to work so everyone could oooh and ahh over our little miracle. I had planned to laminate a Canada unit for my work, bake for my parents visit in a week, review a book manuscript that a good friend intends on publishing soon, and do lots of other things.

Instead I have spent the past 4 days either at the doctor or in the VCU/MCV hospital in Richmond. I have gone up and down like a roller coaster, have seen how little sleep a human can function on, and the 20 pounds I have managed to drop are creeping back on thanks to a huge carb/comfort food binge.

But let me back up a bit. Cary came home on Tuesday. We all loved on her, fussed, cooed, and spoiled her rotten. Even Marvin. Good grief. I went to the bathroom one time and came out to find her surrounded by crayons, paper, tractors, and 3 race car piled on her. He was sharing. I couldn't fuss about that could I? Thank heavens she has crappy eye hand coordination. So she couldn't get it near her mouth, but not for lack of trying:).

By Wednesday her appetite had decreased slightly and I was worried that she was constipated. I talked to her social worker and we agreed that I should take her in to the doctor. On Thursday, still no poop and she threw up a little. Again, no big deal. Babies throw up right? But deep inside my head there was a little alarm bell starting to go off. So I took her into the doctor they gave her a suppository, it worked and I found out she had been on Mirlax for her constipation issues. Once again no biggie. I commented on her lack of color and appetite that afternoon but I was brushed off. So I took a breath and chided myself on being overly paranoid. But something still felt off. Cary refused to eat that evening and was unusually lethargic. Once again I felt a little nervous, but my sister in law was over and I chatted with her and I decided to relax a bit and that I really must be loosing my mind.

I checked Cary through the night and she slept through her feeding. I had decided at that point there was something wrong and unless she ate normally we were going back to the doctor pronto. So I fed her a bottle and 15 minutes later she was projectile vomiting. Not once, not twice, six times. Violently. She was turning purple. I was trying to stay calm, get Marvin on the bus, and tell him that sis had to go back to the doctor, but I am sure that she has a little bug. Marvin was freaked but my calm demeanor reassured him so he went to school with a smile.

So after her left I proceeded to have a nervous breakdown and cry. I called the social worker and left a message and called the doctors office and got her in as soon as possible. When Ms. J called she sounded stressed about it and I told her we would go to the doctor ASAP. She asked me to call with updates. I said I would. She said it was probably nothing. So I went to the doctor and after she took one look at Cary and read her records she said I needed to go to the pediatric ER due to her diabetes issues. Say what?

Now I remember reading that she had something called diabetes insipidus but her social worker blew it off when I asked about it saying that she had "outgrown it" and it wasn't anything big. So stupid me I believed her and I even said something along the lines of that to my sister in law. Whom I am sure thought I was crazy when it was brought up. She does have a medical background. But stupid me chose to listen to a social worker over a person with a medical degree. Let's just say that that will NEVER happen again.

So I went to the ER certain that my child was dying, I was a crappy mom who didn't deserve any children and I was probably going to get her taken away from me because I am a horrible parent who didn't deserve to live. But I pulled it together because Cary senses stress like a radar and started screaming murder on the way down. So I pulled over, held her, and told her that I loved her and that she is very sick and we needed to go to the nice ER people to give her an IV. I am sure she thought I was some deranged fruit loop but she stopped crying blew me a happy raspberry (darn kid didn't even have the nerve to act sick anymore) and away we went. Oh and I had called her worker and let her know. All of a sudden Ms. J was taking this very seriously. She asked about her needing insulin. I said was she on it before? Of course, she didn't know. That was oh so helpful.

So I made it to the ER, met Shannon and after poking my poor baby and shining blue lights on her to find a vein they found one. After 5 painful jabs. Once she started getting fluids she started pinking up some. Then the questions started. Then the ER team found out we had only had her 3 days. They began offering congrats and we worked as a team answering what we could and getting Cary ready to be admitted. At the time we believed that she would be overnight, we would get her fluids, and send her home. Unfortunately, life is never that simple. Cary's team began to come in. When I say team I am not talking about the Green Bay Packers. I am talking about a neurologist, feeding specialist, PCP, endocrinologist, and vision specialist. They were briefed on our 3 day induction, offered congrats, and then looked grim.

They said that they had lost track of Cary. She had missed several critical doctors appointments. What did we mean when we said she wasn't on any medications? Do we know about this. It was at this point that I realized that we were in some serious do do. Unfortunately, we need to stabilize her. You guys will have to stay in the PICU for several days. Cary's team will come in one at a time so you don't feel so overwhelmed (like that was going to help insert eye roll). We are going to get on the same page and work to get her back on maintenance. Don't worry Mrs. Fields, don't worry. Too late for that one.

So I called the social worker. By that time I was boiling mad. Why didn't she let us know about these missed appointments? I could have taken her in earlier. Apparently, Ms. J had no clue either. I had pretty much decided at this point that she is going to be as helpful as mammary glands on a bull and I would table this issue for now. I had a sick baby and a husband who looked like he had been hit with a mack truck who could only say over and over that they lied to us. They friggin lied to us. I got to that problem later on but right now I crooned and stroked Cary. I kissed her. Then the shunt doctor from hell came in, banged on my poor baby's head like she was a ripe melon and tapped her shunt. Good news mom! Her cat scans came back great and she has nice clear fluids and her head looks better than ever. Everyone is pleased about that. Well whoopee do for that. So after I once again calm down my kid and develop a healthy loathing for neurology we get a room in the PICU.

Meanwhile, at the bat cave my wonderful in laws have picked Marvin up and brought him to the hospital. I loved on him so long and hard. I am sure he thought I was a fruit loop as well but I didn't care. After you have been through all this you need to hold on to something "normal". Marvin cried but went with grandma and paw paw. I went back upstairs to be with baby. We were given an extra "room" with a broken twin bed, shared nasty bathroom, and it is either freezing or roasting. But it has been "home" and allows Shannon and I to get some rest in between being with our angel.

Yesterday morning was when we found out about diabetes insipidus. It has nothing to do with blood sugar and insulin. What it is is a communication between the pituitary gland and the kidneys. When Cary was born so premature her little brain hemorrhaged and damaged her pituitary gland. So the gland is supposed to send a chemical to to the kidneys telling them to clean out the yucky sodium and waste and reabsorb the waters to function. In a person with this type of diabetes what happens is that they pee the water and keep they yuckies in the kidneys and pee excessively. They go in reverse. So imagine Cary is an adult. She would have to drink one gallon of water every hour on the hour to function at a normal level. To live. But life isn't like that. If a normal person gets a stomach virus (which is what they determined that she has. She has an elevated white cell count so she has a virus. They also tapped her spine and are keeping an eye out for something more serious, but so far there doesn't seem to be anything worse) they can live 24-48 hours without fluid. A baby with diabetes insipidus can dehydrate and die within a two hour period. It was at that point Shannon and I came pretty much unglued. My baby COULD HAVE DIED. If I hadn't followed my gut we would be burying my child. Shannon and I sat downstairs in the cafeteria and felt very helpless. I cried and Shannon went numb inside.

Then I realized something. I AM A GOOD PARENT. Not a perfect parent, but a pretty damn good one. I CAN DO THIS. My child has a disability, not a death sentence. So I asked question, lots of them. The nurses rallied around me and offered there support and encouragement. Every time I felt myself flagging God sent in an angel disguised as a janitor, nurse, doctor, cafeteria worker, friend. I found something I thought I had lost. I found hope. It has been that hope that has held me up. Then Cary started to improve. People listened to my concerns. When my alarm bell went off I spoke up. For better or for worse Cary is MY daughter.

At the time of writing this a ton of doctors and nurses came in. They were smiling. At me. At us. We get to move out of the PICU and into the nursery wing. If she continues to improve we will go home tomorrow afternoon. There are still hurdles to jump over and I have a major bone to pick with DSS but I am stronger than this diagnosis. I want Cary to be stronger than it too. I don't want her to be some sort of sniveling coward. I will raise a strong and resilient daughter just as I am tring to raise a strong a resilient son. My children will NOT be defined by their conditions.

Well I am at it I want a purple heart for surviving this:). OK, that is probably pushing it. But I would settle for a nice hot healthy meal with not a carb in sight and lots of fresh green veggies. I am craving fish, peas, salad, chicken, pears, and oh all right a little tiny bit of chocolate cake (I'm a girl, sue me). I am also craving time with Marvin. I need my other baby. And clean laundry. Shannon has tried, bless his heart, but he is starting to bring me back weird outfit combos and I am going to start feeling like a circus freak if I don't get some decent clothes. And don't get me started on the guy we share the bathroom with and how he locks me out when he isn't in there and grooms more than most girls I know while I am holding my bladder and thinking of how to cut off his hot water supply. So I am hoping to go home for a few precious hours. To sleep, eat, and love on my son. To begin to try to live my new normal and even more chaotic life. With joy, strength, and above all hope.

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Amy Fields is now a mom to two stay at home kids and is learning how to naviagate this new world.  You can follow her at Many Kinds of Families.

Monday, September 10, 2012

First Day of School Highs and Lows

There was a lot of change for Jacob to manage on this, on his first day of school this year. He is in a new classroom, with a new teacher, moving up a level, now in his last year of "elementary."

And even more significant, his school has undergone a transformation, now housed in a new, singular building instead of being spread out; no longer being special needs guests in a series of larger, typical, Catholic Schools.

That my son no longer has a cross in the logo on his sweatpants when he goes with me to pick up his brother from Hebrew School is comforting. But change is hard for kids on the autism spectrum, and it has been a while since I've seen Jake as anxious as he was this morning.

It started with the actual lack of a uniform. Jake has been used to one for two years now and the idea of free choice in school clothing didn't sit well with him. We got through it - he finally accepted the plain, red shirt in the same style as his former uniform shirts - but I knew it was a harbinger of things to come.

The trip downtown to his new school building now requires either two or three subway train changes and a seven block hike, as opposed to a straight shot on the subway line closest to out apartment and then a short three block walk. The fact that Mommy & Daddy didn't know where they were going (why oh why did I not do a dry run this summer?) was not lost on him, heightening the anxiety.

"Where is my school, Mom?" he kept asking. And thank goodness for Mr. GPS in my phone, allowing me to say "Five more blocks, Jake... four... three... two... one... we're here!"

That we were greeted with enthusiastic warmth and hugs from so many was not unexpected. I LOVE this school in every way imaginable and am grateful for it every day.

But for Jake the few familiar people, even though much beloved, were not enough. So much else was new, new, new, and he was quiet and withdrawn in a way I haven't seen him in a long time; my over-the-top loud talking-all-the-time child disappeared. His voice, answering his new teacher's questions, rose barely over a mumbled whisper; he wouldn't look people in the eye.

I know this will change as he gets more comfortable, as the new teachers and new kids in his new classroom become familiar friends over the course of the next few weeks.

But still, as a mother, my heart kept clutching in my throat as I felt my son shut himself back inside, a shadow of the dark old days I would rather forget.

But the bottom line is: I trust this school and the people in it, completely. They love, respect, and hold the bar high for my son; for all the children in this school. And I know how lucky I am, we are, to be able to feel this way.

So tomorrow morning when I put Jake on the bus (please bus, come something like on time!) I will do so with only a minimum of trepidation, knowing I am sending him somewhere where they "get" him, where they are as committed to seeing something wonderful blossom forth from my boy as we are.

So I will be full of hope. (But checking my phone constantly until he steps back off that bus in the afternoon, because I am after all, his mother.)

Here's to a great new school year for all our kids!

How are you and yours doing this year?

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Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

Saturday, September 8, 2012


The other day I found myself sitting next to some teachers (not teachers at the school my son attends). One says to the other, “How is Tommy doing?” The second answers, “He’s okay, but do you know Bobby? He knows NOTHING. I’m like, has anyone ever read him a book or anything? Because they might want to. That boy doesn’t know anything.’”

Later, I heard someone say, after a difficult interaction with a young girl, “Wow, I can just picture the parents of that one. Sheesh.”

Here is the thing: I don’t know what to say in those situations. I feel like I should say something, or else become complicit in a culture of constant judgement, and I don’t want to do that. But I have no idea what the right thing is to say. My goal is not to pick a fight. I don’t want to bare my soul, and I’m surely not looking for pity.

Whether they meant it or not, what I heard was:

* That child is stupid, and what’s more, it’s his parents’ neglect at fault.
* That child is awful, and her parents must be, too.
* I am better than these families.

I felt stunned, queasy, and angry.
If I did not have high needs children of my own, would I have heard the conversations this way? Or, if I did have the same feelings, would I have been able to voice them somehow? Hard to say. It all happened very quickly, but as I’ve replayed it my head many times I have not found much clarity.

All I know is that I am a special needs parent, and as such I have even greater respect for all kids, all parents, all families, all differences. As such, I have less respect for judgmental and derisive comments.

I want to find the right words to say next time something like that happens. I welcome your (positive) comments if you have suggestions.

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

Love, it happens.

I have this boy, he is funny, adorable and has the ability to light up a room with his laughter. He has a great sense of humour,  he loves sports and music, he is his little sisters hero. His name is Fudge and I love him in a way that only a mother could. He makes me crazy with his misbehavior and his antics but underneath all that silly little boy behaviour I see a glimmer of the wonderful man that he is going to grow into. A man who will be a fabulous at whatever paths he chooses to pursue because if there one thing that persistence is good for it is being successful.

I have not always been able to speak of him in that way, there was a long time when neither of us wanted to love one another. We have moved through that in many ways, it took a really, really long time, years in fact but then this week, he reminded me how very hard things can be with him.
On Wednesday he took me to a place I have not been to with him for a while, a place where he reminded me just how tenuous our relationship was for much of the first 3 and half years that he was my son.

There was a time about 2 years ago when I had given up hope that Fudge would ever love me. I talked about it then and you can read about here and here. They were dark days for me, days when I thought that things might never get better. Weeks and months when I had to let P be the only parent Fudge's had because he was not willing to let me be his parent. I cooked his meals and did his laundry, I kissed him goodbye and goodnight but really that was all. P did everything else, all the nurturing, all the conflict resolution, assigning of consequences, all the stuff parents do for their kids was up to him. It was the only way to make it work. Fudge hated me, yes I said hated. It was not me as a person he hated, it was me as his Mom. He had been so hurt and he was missing the Moms he had before so profoundly that there was no way he could attach to another woman who said she was going to be his Mom. He had no reason to trust that I was not going to leave him even though I said was not.

I almost gave up more times than I would like to admit. I almost threw in the towel and stopped trying because I felt like it would never change. In the spring of 2011 he and I started therapy together again. I was committed to giving our relationship a chance to be something more than it was, something more than just a kid and his caregiver which was how I felt. Therapy was hard, he consistently talked about how the grass was greener everywhere else, about how I was not as good as everyone else and how really there was nothing that I could do that would be good enough.

It hurt.

I cried a lot.

But I kept going.  Looking back I am not sure how, I am not sure what kept me going during those really dark months. I know that I was holding on to the fact that if he never attached to me it was not my fault, that I would of done everything I could to make him feel safe and loved. I could only show it to him though, I could not make him love me, that was up to him. There were times when I wondered what giving up would mean for our family, his brother was doing well and after much discussion we decided that it would just mean that P would be his only parent, that was really hard for me to think about and admit.

Week after week we pushed through, things got way worse, way harder and then almost a year after we started things started to change. I wrote this post then, the changes I was seeing in him gave me so much hope for our relationship. He let me do things for him, he came to me for comfort and just to say hello, he wanted to brush my hair and to touch and to be touched. These were all huge steps for him and although there were times when the last thing I wanted was to let him touch me I did it, I sucked it up because I knew that this was what he needed.

When things finally started to change I was apprehensive, I was not sure that this was going to last but it did, he is slowly but surely attaching and it makes life with him so much more enjoyable. It makes me happy to be his Mom, I look forward to being together and not dreading our every interaction.

We have our moments though, it is not all roses and sunshine around here let me tell you. This week I was reminded of that, on Wednesday he and I had an epic blowout, we were both so mad at one another the other kids were steering clear of both of us. Later when we were both calm, I talked through what had happened with him and apologised for totally blowing my top and he looked at me and said, " you kind of had a right to be that mad, I was being a jerk." I just about fell off my chair, I was floored by his ability to notice what he had done and admit it such a short time later. He is attaching, I am attaching and we are going to be ok even if it did take 4 years to get here.

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J blogs at Steller Parenting 101 where she talks about the good and the not so good parts of this parenting older adopted children journey. 

Thursday, September 6, 2012

The atypical atypical child learns to fly

This week, we returned to Billy’s neurologist to talk about what’s going on seizure wise.
He had his first recognisable seizure in January this year, and a second one in June. In a 48 hour EEG, they found constant frontal lobe spikes (sub-clinical discharges) and the jury is still out on whether his increased staring spells and physical stereotypies are seizure related or not.
His neurologist is a reasonable man, who has known Billy since he was four. He is the head of neurology at a major children’s hospital. He has a little more of a tendency than I would like to shove Billy’s unusual neurology under a neat little autism umbrella, but he knows his stuff and he’s willing to listen.
Today, he acknowledged the atypical nature of our beautiful boy, in relation to the various conditions he has been diagnosed with. For new players, those conditions are autism, transverse myelitis, epilepsy, chronic constipation and reflux. He acknowledged the atypical nature of his relationship with introduced toxins like vaccines, medicines and pesticides. He also acknowledged something else that we really hadn’t thought about before.
As he played through a slideshow of Billy’s most recent MRI, clicking through slides showing cysts, hyperintensity and prominent perivascular spaces, Billy’s neurologist said, ‘So, we are definitely dealing with a highly abnormal brain structure here.’
We went on to discuss therapy and medication options, lifestyle accommodations and further testing. I didn’t cry (I suspect because the practicalities are much easier than the implications of words like ‘abnormal’) and I am quite proud of that fact.
To more experienced players in this game, I’m guessing those words wouldn’t be much of a revelation. In all seriousness, they are not unexpected words.
In reality, they hit me like a hammer to the heart.
This is not going to be pretty.
And if you are in the mood to throw epithets around about overly emotional parents being wrapped up in themselves, or not supporting or accepting their kids, then please… for the love of Bambi, click on another page for a while, because I’m going to try and share a few feelings here.
We, like most parents, did not set out to have a child with a disability. We didn’t decide after prenatal testing to go ahead anyway. We didn’t have a visit from a specialist soon after Billy’s birth telling us that there was something we needed to consider.
I’m not valuing those journeys over the one we have taken, just pointing out what ours was not.
Disability crept into our lives, accompanied by a charming (not) set of denials, rebukes and rebuffs from family members, teachers and medical professionals about being overprotective or panicking for no reason.
We saw, and continue to see our son’s challenges as they emerge, well before those who are not his parents. We accept them and him because it is as natural as accepting that today is a (insert today’s weather) day. It would be nonsensical to deny or consider not accepting them.
Because of this gradual journey, we have continued our parenting adventure using the same loving frameworks that any parents do. We all celebrate the now, we reference the past and we speculate about the future. We have been working on the well-worn theory that parenting is all about giving your child roots and wings.
So, today was tough.
Today I learned that the future might not be the independent, self motivated, career oriented thing I thought it might possibly be for Billy.
His brain isn’t just ‘wired differently’ as those puzzle piece adorned inspirational autism posters on Facebook would have us believe. It’s built differently. It is not capable of being normal in the normal sense of the word.
It’s not going away. It’s not going to ‘get better’. The best we can hope for is that it won’t get much worse, though the neurologist acknowledges that current trends are not massively positive.
Now, before you go, ‘Oh don’t lose hope…’ or ‘he’s awesome just the way he is…’, let me reassure you, this is not about hope or questions of awesomeness.
This is about cold hard imaging fact. A cold hard imaging fact we did not know yesterday. A cold hard fact that changes, in very specific ways, what we can and should expect of him in his future.
We are not giving up on him, or lowering the bar or thinking he’s hopeless. We have simply been forced to acknowledge something we didn’t know before… that his brain is not structured adequately for what we broadly call ‘normal’ functioning.
It’s not like we actually, rationally thought the autism was going anywhere. We knew once EI was over (maybe close to when it started) that pretending to be not autistic, or indeed practicing being not autistic wasn’t having the least bit of effect on actually being autistic. We may have ignored the more adaptive elements of EI, as we were intent on Billy benefiting so much from EI, he would be undiagnosed by primary school. That, in retrospect was probably a mistake.
We have launched a massive diet and supplement offensive over the last year or so, which has had nothing but positive effects on his health and functioning. But it hasn’t made the autism go away.
The emergence of other medical issues probably should have opened up our eyes a bit. To be honest, though, the indifference (at best) and blatant, offensive denial (at worst) from Billy’s school and GPs in particular, tempered our understanding a little.
So, knowing that Billy’s brain is officially and noticeably abnormal shouldn’t make the slightest difference, should it?
It probably shouldn’t, but it does. It just does. As a parent, as a mother, it does.
It brings to mind the good (I am not crazy, at least), the bad (I cannot let him out of my sight ever ever again) and the ugly (my body well and truly ballsed up brain building).
Regardless of bigger issues around acceptance and plasticity and diversity (of any kind), hearing this stuff hurts. It’s nothing like what Billy has to deal with, obviously, but it sucks. It’s not what a parent wants to hear, no matter how inconceivable what I really want to hear (anything from ‘we got it wrong’ to ‘it’s a miracle’ to ‘we can totally fix this’) is.
I share this not to whine, but to open minds to the idea that ‘hope’ and ‘grief’ are not mutually exclusive. I think I would be doing myself and many others a gigantic disservice if I didn’t acknowledge the negative feelings that come from realising there are rational limits to hope. It’s not all doom and gloom, by any means, but it’s definitely a wake up call.
People are great at platitudes in these situations. ‘You just never know…’ or ‘I read this story about…’ are both valid, affirming responses to offer.
We are not so great at going, ‘Wow, that sucks’, because we are too afraid we might offend someone by saying what everyone is thinking.
So, I’m saying it. It sucks. It really does.
It will be OK, and it is what it is, and he’s totally and completely the best boy he could ever ever be, but… today feels like the last page of Dr Seuss’s 'A Great Day for Up'.
We need to nest.
We need to re-think what his wings might look like, or feel like… or perhaps, how their structure might influence our thoughts about flight.

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Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.

Wednesday, September 5, 2012

Preventable Mistakes (& dealing with hospitalization)

Warning: some graphic language on bodily functions out of necessity.

There is an emphasis under healthcare reform on preventing medical errors. This can be as simple as medication administration and as complex as surgical procedures. There is also an initiative on preventing hospital readmissions. Here are some possible concerns:
  • Duplicate tests or unnecessary invasive procedures
  • Secondary infections
  • Medication errors or side effects
  • Emotional impact on families

What Can Parents Do?
Labs: If your child just had bloodwork or other samples taken, ask if they can add new lab tests onto the samples they already have, usually this works if it’s within 24 hrs. This may save your child from having to get another needle or other samples. Also find out what tests are needed that day so samples aren’t discarded and then needed later that day. Also, if you know they’re monitoring output (urine/ feces/emesis) for example, don’t let someone discard anything until you check with the nurse if it’s ok. Sometimes aides or cleaning staff in trying to be helpful, will throw something out in error.

Procedures: Ask if there’s a less invasive option, this is especially true for surgery. For example, for “prep” if a child can drink the Golytely in a certain period of time, an N-G (nasogastric) tube may not be needed. For a urine sample, if a child can’t use a specimen container, ask if they can go in a toilet “hat” and transfer; for incontinent children, sometimes gauze can be put in a diaper rather than using a catheter. Maybe a nurse could use qtips instead of suction for viral samples. If your child needs multiple sedated procedures, see if they can be combined in the same day. Or if your child is being sedated for something else but needs a dressing change or new IV which is distressing to them, have it done while they’re out.

Hospital Acquired Infections:
Sometimes the secondary infection may be even worse than the original condition. UTIs (urinary tract infections) can be caused by poor hygiene, such as leaving a child in a soiled diaper. C.diff. (C-difficile) is one of the worst and can even be fatal. NOTE: Antibiotic gels don’t destroy it, only soap and water does. If your child gets one of these infections, ask for a “test for cure” to make sure it’s gone after the medication is done. Make sure staff, family, and visitors are following “contact precautions” such as using gowns, gloves, masks, and washing hands. Afterwards, if your child goes home with an infection, ask what you need to do differently. For example you may have to bleach the bathroom, wash clothes separately etc. so no one else gets it.

Medication Errors:
This can occur especially if your child is on many medications or they change frequently. Sometimes the hospital pharmacy will make a substitution and you need to make sure it’s the same dosage. The nurse should verify what was sent by pharmacy but families can also double check. Also note that some meds. are usually only given for a certain period of time and may “time out” in the system which means pharmacy doesn’t supply it. Doctors depend on the nurses to administer and may not be aware it’s stopped. And nurses may not be aware of why it was discontinued as they just administer what’s supplied by the pharmacy dept. so they don’t question when it was stopped. For example, antibiotics are typically only given for 10-14 days but are needed for a full year post-transplant. We use My Med. Schedule (see resources) to ensure our child is getting all her medications and compare it to the nurses list each time; we also ask to be informed of any medication changes. In addition, we made sure our child had clean hands before anything like meds., food, or drink went into her mouth.

Medication side effects:
Sometimes medications have unexpected consequences. For example, three of the meds. my daughter was on have pulmonary side effects so she ended up with 70% lung function and interstitial pneumonitis, which is symptomatically similar to pneumonia without viral/bacterial cause. After the doctors adjusted her meds., her coughing stopped. Also, meds. to treat one condition may cause another. Sometimes antibiotics can cause a C. diff. infection. Then the meds. used to treat C. diff. can cause a fungal infection. If you know your child has a pattern of bacterial or fungal infections, ask if there’s another med. or if a preemptive dose like a fungal med. can be given to prevent a full-blown infection. Always ask about side effects, which is especially important if your child already has conditions like hypercholesterolemia, hypertension, hyper/hypothyroidism, etc. For a list of medication side effects, consult the Physician’s Desk Reference (see resources).

How to Deal (medical errors and general hospital experience):

I added this section because medical errors can cause additional unnecessary stress on the child and families, in addition to just being in the hospital. In even more serious situations, you can watch your child being resuscitated and no one even asks you how you’re doing and THEN you have to go back into your child’s room and act like everything is ok for their sake. I found that Child Life was helpful to alleviate my daughter’s fears before a procedure or sometimes stayed to calm her during. They also helped when she was upset that she wasn’t able to eat for 4 months (we also put a sign on her door so the nutrition dept. wouldn’t come in and ask what she wanted on the menu). The Social Work dept. was helpful when I asked how to help my child when she felt like I wasn’t able to help her with personal care when she needed me the most in ICU as she was hooked up to multiple IVs, foley, PICC line then Broviac, IJ then medcomp, and ventilator. They reminded me I was there to be her mom, not her nurse, and just do what I could. Another thing that was extremely helpful for my daughter who has autism when her anxiety started affecting her medical status (e.g. skyrocketing heartrate), was the developmental pediatrician implementing a behavior plan which became part of her permanent chart. This included preparing her before, if possible doing the procedure in steps so she could calm down in between (using a heart monitor during), and involving Child Life.

I found it helpful to keep a notes folder in the room which helped to remember important issues under stress. We would also put important things on the memo board like she could only have water, or calming items (aides would turn off TV but it actually helped her sleep to leave on), when you’re not there. We brought many of her personal care items if she couldn’t use what was supplied by the hospital. We even had signs on everything from the thermostat (at risk of dehydration if too hot), personal supplies (toileting hygiene), food/toiletries (no fluoridated water/toothpaste or aluminum deodorant due to decreased kidney function), and even a child sleeping sign so folks would be quieter. Families need to remember to question and speak up. If there’s a concern about what an aide is doing, ask the nurse. If there’s a concern about the nurse, ask the charge nurse. Families can bring up important issues to doctors as part of morning “rounds” on their child. They can also let the hospital infection and/or quality control know of concerns. By working in partnership with hospital staff, families can help their child get the best consistent care.

Getting and Staying Home
Make sure you have a discharge plan and everything in place before returning home (e.g. home nursing or homebound instruction for school if needed). Try to get dates for follow-up appointments before going home. Make sure you have all the meds. Follow all of the doctor’s instructions at home, ask if there are any changes to the personal care routine, and if you should monitor anything (e.g. temperature, blood pressure, intake/output, weight, etc.) Get a list of reasons to call the doctor and what to do in an emergency. Hopefully by doing these things you can maintain your child at home.

Remain hopeful,

Medication Organizer:
Medication side effects:

Please note this post was written by Lauren Agoratus, even though Blogger indicates Christina Shaver