Wednesday, September 28, 2011

The Magic of a SpongeBob Band-Aid

I am a very focused person, "too focused,” my husband says. So it is not surprising that I find myself often obsessing about the syndrome. Or as my husband so lovingly calls it "OATS", which probably comes from his military background and the need to make everything an acronym.

Anyway, I obsess, I obsess I obsess.

I read e-mails about Prader Willi Syndrome. I surf the net for research articles about PWS. I talk to doctors about PWS.  I write a blog about PWS.  My mind is always thinking about PWS. It's PWS, PWS, PWS! And it is all too often that I forget to just stop and enjoy my life, my family, my children, and the world.

Seems it's always Nick who snaps me out of it.

Yesterday was one of those moments....

I was sitting at our kitchen table finishing up discussions with Becky, our Oral Motor Specialist. She had just completed a therapy session with Nicholas and was recording his information into her laptop. As I was talking to her, Nicholas climbed up into my lap. He began to study my face carefully. I am continuing to talk and trying to ignore him at the same time.

He says.....

"Mama, your eyebrow is broken."

"Yes, Honey." I say, completely unaware of what he just said.

"Mama, your eyebrow is broken," he says, this time a little louder.

"Yes Honey," I say, this time a little more impatient and still unaware of what he has just said.

"Mama, your eyebrow is broken," he says once again, only this time he takes my face into his hands and looks me lovingly in the eyes. Nodding, he says yet again,

"Mama your eyebrow is broken."

I finally stop talking and listen to this poor boy and realize that he is absolutely right. My eyebrow is broken. When I was a child, I fell off my bed and cut my eyebrow on the night stand.  I was taken to the hospital for a handful of stitches, leaving my eyebrow permanently scarred.

I looked at my son and laughed,

"Yes, Nicholas, Mummy hurt her eyebrow when she was a little girl."

"I fix it!" he cries enthusiastically, and runs into the kitchen.

I continue on with my obsessive need to live, eat and breathe PWS. 

He carefully opens the kitchen drawer...."rrrrrccccckkkk".

He reaches for the Band-Aids, the SpongeBob ones, not the boring tan ones.

He carefully opens the package and removes the Band-Aid, the one with pink Patrick Starfish wearing a pair of green and purple shorts, his personal favorite. He carefully removes the backing. He runs over to me, climbs into my lap carefully holding the precious dressing, trying to ensure it does not stick to itself. As I drone on about nothing important, he sits up on his knees, faces me and carefully places Patrick the Starfish smack, dab onto my broken eyebrow, a perfect placement, Marcus Welby, MD could do no better.

"All better!" he says proudly to himself. And finally I am silenced from my droning by this amazing child who "gets it".

My mouth hangs open, I am completely speechless. The blue plastic Band-Aid, taped carefully to the few remaining hairs of my eyebrow, has paralyzed me. My obsession is over at least for a few seconds.  My son is looking lovingly at me like he has just cured the world of all disease and I realize…this is what's important.

It only took a small child with a SpongeBob Band-Aid to open my eyes.

To learn more about how we are enjoying our lives despite our family battles with Prader Willi Syndrome, ADHD, Aspergers and Dementia, come visit our blog at Thanks for reading!

Tuesday, September 27, 2011


Last night, as Oscar was heading to bed, he wanted to bring the book he is reading -- Honus and Me -- along with him.  When I said no, his shoulders rolled forward, his arms swung at his sides, his chin quivered and tears beaded on his long lashes. He almost dropped to the floor into a w-sit and screamed into his palms. Usually when he reacts like this it means that he has some plan that we are foiling by denying his request.  Clearly he wanted to sneak in some reading after lights out.

Oscar, who is nearly 11 and has Prader-Willi syndrome, struggles with sleep – he goes to bed earlier than his siblings and still naps for a couple of hours every afternoon. Even so, some days he’s barely keeping his eyes open at school despite several “sensory breaks” to get his internal engine revved up.  He’s many years overdue for the sleep study that will probably show that he’s not moving into the deepest cycles of sleep and, in fact, is awake much of the night.

I’m often anxious about getting him the sleep he needs to function at school and at home.  With less sleep his behavior is more volatile, he’s less flexible, has trouble concentrating and moves even more slowly than usual. And, because of Oscar’s naps, I’m always asking his siblings to use quieter voices in the afternoon.  I snap when one of them scrapes the kitchen stool over the tile floor or accidentally slams a door.  I’m especially reluctant to invite their friends over to play.   The afternoon hours are stressful for me and boring for Abe and Ruby.

I’m so tired of this dynamic that we are plowing forward with renovations on our dilapidated old house so that we might be able to sell it and find a home that works better for our family.  Oscar needs to have his own room farther from the bustle of our household and Abe and Ruby need a space to play with friends without worrying about waking their brother. 

At times like this, when I am surrounded by moving boxes and piles of stuff to donate, when I’m carting crates of dishes over to the house we are paying an extraordinary amount of money to rent for two months during the renovations, when I’m consulting with stagers and kitchen designers about what color to paint the house and which faucet to buy so that it is more likely to sell, I get a little overwhelmed and go down that scary path of “what if”. What if Oscar didn’t have Prader-Willi syndrome? What if we’d been able to maintain this house all along, or didn’t need more bedrooms, or didn’t have to stay home every afternoon (or, while I’m at it) could walk to get ice cream at night more than once a year because we felt like it? What if…

That path leads nowhere.  And truthfully I’m excited about the changes we’ll make to this house. I’m even excited about being in a new space for a few months.  It’s not all bad, this path we are on – it is just too often overwhelming.

Oscar’s tears stopped quickly last night. He stood up tall, pushed his shoulders back, calmed his voice and clearly articulated his position that he is a 5th grader now and that 5th graders are responsible enough to keep their books in their room without being tempted to read. I was impressed with how he pulled it together, and, uncharacteristically, I struck a deal.  If he manages to be ready for school  -- dressed, backpack packed, shoes on, teeth brushed -- every morning this week by 8am with no reminders he will earn the privilege of having his book in his room with him at night. 

Oscar giddily accepted that challenge.  Thrilled and confident in his ability to prove to me that he is ready for 5th grade responsibilities, he turned again toward his bedroom, but then peeked back around the corner and said in a silly French accent:

“Yoo vill be soopriz-ed!”

I laughed so hard, at his humor, at his funny little accent, and at our crazy crazy life, that the other two kids came running.  (“What is that sound? Mommy laughing? It couldn’t be!!”)  And it occurred to me that what is interesting about this path that we are on, this path I love to despise, is that I am often surprised.  And Oscar is most often the one who surprises me.


Mary Hill lives in Berkeley with her husband Paul and three children, Abe, Oscar and Ruby. 

Sunday, September 25, 2011

Telling His Story

September 10th was World Suicide Prevention Day and I felt a strong pull to post about my son's story, so I posted about a time 18 months ago when we had to commit him to a psychiatric hospital for suicidal thoughts and a complete emotional breakdown.

I'd waited until the 10th to finish the post (yes, I put it off) and when I hit sent, I was emotionally spent. In the comments and on Twitter I received a lot of support except for one comment that questioned me telling his story. The commenter's position was that mental health issues were private, even though our young son knows his story is public for the world to see.

I do not struggle much telling his story because if a fellow blogher hadn't shared with us her story through blogging, we wouldn't have learned some unique things in caring for him during the really rough spots. For the posts that are focused on his mental health issues I read them to him and get his permission.

What that person doesn't know is that I get private emails thanking us for sharing his story of despair. I got one email that said, basically, if he at age 9 survived it, then they could too. Not only did the person see hope in our family's story, they saw the unwilling resilience of our son during that time. When he couldn't find the will to live, we found it for him. A couple of people have found his story helpful comparing their story with his and it's helped them hold on just a little while longer.

Do I question our decision to share details? Sure. Am I certain sharing our story is good, in the end? Yes. Because it is a mental/emotional issues people cringed. Some people think we should be silent. Those people don't have the same issue about my kids' medial issues. Sharing their medical journey through kidney failure and kidney transplants do not garner any criticism.

If we don't start to tell those stories of us and our kids' mental health struggles there will be people out there who don't know they can survive it. And for now, it is good enough for me that one person is helped and stigmas broken down.


Julia Roberts blogs at Kidneys and Eyes and is the co-founder of Support for Special Needs.

Friday, September 23, 2011

A Few Suggestions

After four trips to three different doctor’s offices this past week, I have decided that most doctors’ offices are seriously in need of a redesign. And, they need to consult with us parents of children with special needs when doing the redesign.

For example, just separating one large room into two by using a row of chairs does not a sick and not-sick waiting area make. If you truly want to separate the children who are sick from the non-sick, two separate rooms, each with their own door, are needed.

If you wish to supply toys for the children while they wait, you need to follow daycare toy rules – wash them every evening in a bleach water solution – don’t include any soft toys like stuffed animals – and definitely consider that there may be children with vision and hearing impairments, autism, and other sensory issues. Also keep in mind that there may be children from infants to teens. My teen daughter really has no interest in your shape sorter toy.

It’s very nice if the office has automatic entry door (although most don’t), but what about all the other doors? Those of us with children in wheelchairs or walkers still have to perform acrobatics to get your exam room doors open or your bathroom doors open. And yes, most of you now have accessible bathrooms, but please consider that some childhood wheelchairs are huge, and that sometimes two adults are required to accompany a child to the restroom. Please make sure there is enough room for all the people and all the equipment.

If you supply books and magazine, please understand that many of our children with special needs love to tear paper. If you have a particular book or magazine that you cherish, don’t put it in the waiting room or the exam room. And about those exam rooms – I have yet to find one big enough to accommodate my child, her chair, her equipment, me, and another adult. As soon as I walk into the exam room, I turn into a furniture mover.

Also, I understand that many of the exams doctors perform require that a child lie on an exam table. But I can no longer lift my 14 year old daughter onto the table. If you really need her up there, we’ve got to come up with another idea, or at least 4 strong people.

I love my daughter’s doctors. They are some of the nicest, most caring people I have ever met, and I know they have my daughter’s best interest and optimum health at heart. But let’s not forget the practical side to caring for children with special needs…

Tuesday, September 20, 2011

Instinct for Ignorance

Carter doesn't talk about his illness. Not ever. Not to his dad and me, not to his therapist, not to his psychiatrist, not to anyone. 

If asked why he goes to therapy, he says, "I go to talk"

If ashed why he takes medicine, he says, "I need it," or, "My mom tells me to."

We have tried, on occasion, to discuss the matter with him. Or rather, to test his curiosity about it. It seems that he has none. 

No, that's not quite right. It's more accurate to say that he is anti-curious. When any of us (parents, grandparents, therapist, siblings) tests the topic Carter reacts almost violently. "I don't want to talk about that! Don't talk about that where I can hear you!" 

So, OK. That's fine, except that I don't understand it even one tiny little bit. I am endlessly curious, and so possessive about my own internal life that I'm rendered furious if anyone thinks they understand something about me and I don't agree with them.  I gauge my internal environment constantly. Even when I was a child I explored my mind and my behavior for clues to my motives and feelings.

And if someone thought they knew enough about me to hang a diagnosis around my neck? I damn well would have wanted to know what that diagnosis was, what it meant, what I could do about it, and what the prognosis was (even if I didn't yet know the word prognosis).

Not so for Carter. We do know that he has put together a few things (like the fact that among his medicines are some that are meant to make the "little guys" go away), but he refuses to let us tell him more. His therapist says this anti-curiosity could be a result of the trauma he experienced two years ago, when he was so deeply ill that his own behavior terrified him. His psychiatrist says his anti-curiosity could itself be a symptom of his mental illness, or that it may have to do with a delusion or hallucination. 

Me? In a stunning impulse to look on the bright side (something I usually have to tie myself in knots to accomplish), I've decided that he knows on some deep level that there is a whole vocabulary swirling around him, and he's not ready to know those words and their meanings. Once he hears and understands the words bipolar, psychosis, borderline IQ, generalized anxiety disorder, and all the rest, he can't un-hear them. He can't un-understand.

When he wants to know more, I will tell him, but until then, I'm glad that some instinct has helped him maintain what little innocence he has left. 

*     *     *

Adrienne Jones lives in Albuquerque, NM with her husband and their four children. She is the author of the blog No Points for Style.

Monday, September 19, 2011

Counting Sheep

Connor's in another major run of insomnia right now (a side effect of his seizure medication), so my brain isn't really firing on all cylinders at the moment.  I've reached the point where I start forgetting words; I'll know exactly what it is that I want to say but I won't be able to put together a sentence coherent enough to actually get my point across.  So I find myself saying things like "Put Connor on that, um, that thing you sit down on over there" instead of using large vocabulary words like "couch."

Usually the little guy doesn't go for more than four or five days in a row before he crashes and sleeps for sixteen or seventeen hours straight.  I've learned to take advantage of those days and get as much catching up done on my sleep too, as he's usually back to being up all hours within three or four days.  We've been dealing with this issue for a couple of years now, but it's only been really constant for the last six months or so.

While Connor is able to stay up until two in the morning three or four nights in a row and then suddenly start going to bed at eight, my body doesn't adjust to bedtime changes quite so quickly any more-- I find myself lying in bed staring at the ceiling long past midnight while my child happily snoozes away.  And as much as I'd like to, I can't go to bed while he's awake, even if he's just happily cooing away to himself.  Connor only has seizures while he's awake, so that means one of us has to stay up with him.  Since I don't have to drive to work early in the mornings, on weekdays this means me.

I think the insomnia is one of the most difficult things for me to deal with as far as Connor's special needs go, because it really saps my reserves.  It makes everyday tasks just a little bit more difficult than they otherwise would be, and I don't have as much patience when things go wrong.  I find myself phasing out of conversations, or going on "autopilot" and driving home when I was supposed to be going to the grocery store.  There's only so much caffeine I can drink before it doesn't do me any good any more.

It's gotten to the point where sleep is so important for my daily functioning I've started using my respite care time to catch up on it.  Sure, using it that way doesn't help my social life any and it certainly doesn't help my errands get finished or the chores done, but it does help preserve my sanity so that everything else doesn't seem like such a huge task.  I'm amazed at the difference it makes in my mood, productivity, alertness and even my appetite when I get a couple of blissful nights of real shuteye.  Certainly it improves my writing.

And apparently if I didn't take drastic measures to catch up on sleep, I'd be increasing my risk of obesity, colon cancer, breast cancer, heart disease and diabetes in a big way.  Who knew?  Suddenly using my respite care to snooze doesn't seem like such a bad idea after all.  Sleep seems like one of those little things that isn't all that important, but I'm amazed at the difference it can make.  If I don't get my dishwasher loaded, or stop and pick up more eggs, it's not going to potentially ruin my health. 

And if I don't take care of myself, taking care of Connor is going to become a whole lot more difficult.



You can find Jess daily at her blog, Connor's Song.


Ready or Not

I was out of sight during a game of hide-and-seek, and Cubby couldn't find me.  Just a few months ago, this entire scenario would have been impossible.  Before we started Early Intervention, I couldn't leave Cubby.  Ever.  I couldn't go into another room.  He could only sleep next to me.  I couldn't use the bathroom alone or take a shower.  His occupational therapist began introducing games of hide-and-seek for the three of us at the local playground, and slowly, slowly, he got better.  He learned to trust her, and eventually learned to trust that I would come back.

Mummy, where are you?  I miss you!

There isn't a day that goes by when I don't marvel at this boy's language skills.  His ease at expressing himself and his emotions, so strikingly different from his older sister.  I let myself exhale a little.  It won't be so hard for this one.  He can communicate, he can tell someone else what is wrong.  He doesn't rely on me to decode every situation, every adverse sensory reaction.

He made other kids of progress too under Early Intervention.  He strengthened his muscles, both fine and gross.  He can hold a crayon correctly, he can jump from one place to another.  He learned to tolerate being touched, and ask what was making the noise.

But there were some goals we didn't achieve before we moved.  He still struggles with waiting and turn-taking.  He is still an anxious little boy whose attention span is very short.  Most of all, though, he is still a child that can't always play well with others.  He gets too overwhelmed.  He prefers to sit on the sidelines, observing.  For all the great strides he has made, I still worry.  Of course I worry- I'm his mother, and he will always be my baby.

As his mother I can do so much for him.  I can give him a sensory diet, to lessen his need to spin himself in circles.  I can distract him when he repeats things over and over- echoing his sister's echolalia.  I can explain things, prepare him, help him understand this at times confusing world.  But I can only do so much.  What I can't do is be a typically developing peer and playmate.

So today he starts preschool.  He is excited.  He is ready, but I'm not.  I'm afraid that this sensitive little soul will become overwhelmed and will withdraw just as Pudding did when she started school.  Recently we've spent a lot of time together, just the two of us.  Over a cup or two of rooibos tea, we've talked about school, and how Mummy can't stay, and the teacher and new friends will be there to play, until I collect him before lunch.  Every day he asks to go to school.  He is ready.  I can't hide from it, not when he is seeking something more.

So I stepped out of my hiding place.

I miss you too!

I gave him a hug, and he giggledReady or not, here we come. 


Spectrummy Mummy blogs most days about the adventures of nearlytypical Cubby and his big sister Pudding.  You can also find me on Facebook, Twitter, and in real life in Johannesburg.

Sunday, September 18, 2011

Fine Line

To say that I am identified by my role as Rojo’s mother, is an understatement. I eat, sleep, breath Rojo – have for fifteen years now. I plan. I organize. I create. I build. I improvise. I catch. I readjust. I schedule. I therapize. I worry. I trust. I laugh. I cry. I bore. I entertain. I discourage. I inspire. All in the name of Rojo.

It’s also fair to say that if you’re a friend of Rojo’s, you’re a friend of mine, and vice-versa. The people that I’m close to in my life, are close to him. No exceptions. Some are close to him only by reading the blog. Some because he now texts them and calls. Some because he stops by to visit. Some because they met him while throwing a ball to their dog.

We have neighbors that live right behind us. They are a retired couple that have put two wicker chaise lounges on their front porch, hooked up a fan, and spend as much time out there as possible on nice days. He reads the paper and his business and news magazines. She reads O Magazine and paperbacks. I did not know all this until receiving a text from Rojo on Saturday morning that said, “COME TO THE V.’S FOR ICED TEA. COME RIGHT NOW. BRING FLICKA.”

So, naturally, I did. They wanted to meet me formally, since they’d been spending quite a bit of time with Rojo. He had told me he’d met them while riding his bike around the block (over and over and over again), and now and then he’d say, “I’m going to go say hi to the V.’s.”

While never having officially met the V.’s, I knew exactly who they were. I know their oldest daughter, who happens to be the mother of K., a young woman with Down Syndrome – the V.’s oldest grandchild. I also know their youngest (of six) “child.” Turns out they get quite a kick out of him and his visits are a highlight of their day.

On Monday two different friends living on two different blocks both told me they’d attended their block parties over the weekend, and Rojo was quite the subject of conversation. Person after person mentioned how much they enjoy their visits with him at the dog park. People I knew. People I didn’t know. One friend said an older man on her block got choked up talking about him, and how excited he was that he was able to go to high school with his sister, and how neat the new program was.

All these people know Rojo in a way I don't. They know him when I'm not around. They know him differently, and that's something I need to keep in mind.

Met with the preschool teacher that worked with him over the summer. She was so impressed with how much growth she saw in him in just two months, and wanted to really encourage me to keep pushing him, not to put limits on him, that nothing was impossible: driving a car, going to college, getting married.

While I can’t fathom him ever doing any of those things, I am trying to walk that fine line between realism and optimism. I certainly don’t want to hold him back, nor do I want to push for things that are simply never going to happen. Because I am so identified as his mother, it’s hard to remember that others may have a view of him that I am unable to see – doesn’t mean it’s accurate, doesn’t mean it isn’t, but it’s a view worth climbing up to and taking a look from every now and then.

Saturday, September 17, 2011


We celebrate one of the last summer afternoons at the ice cream shop.

Addie digs her fingers in. Before long there is ice cream everywhere.  Because she is my second born, I do not fret about her messes.  Her poor older sister had to endure the reflexive freaking at every potential drip, the scrubbing of every actual drip, the constant ordering of the most innocuous colors/flavors to avoid stains.

But thanks to 2nd child enlightenment and faith in oxy clean, Addie gets chocolate.

I watch her and pay little attention to anything else.  Her communication device is in front of her, but she does not care to commune with anything outside of her frosty treat in its crunchy cone.  The ice cream, at my request, was placed in a cup with the sugar cone on top.  She likes to alternate between ice cream and cone; we learned that the hard way. She used to just bite into the side of the cone with the full dollop of ice cream eventually toppling from its perch. 

Her back straightens and curves at intervals as she works on her project of devouring the sweet.  Every so often she chuckles the chuckle of the deeply satisfied.  One can imagine the same private restrained guffaw from a fat cat counting his riches in an ornate leather office.  She feels lucky.  And so she is.

Every once in a while she looks up at me and checks on my progress with my project.  I’m doing ok with it, but a little distracted.  She steps up her speed.  While I don’t know this for certain, I believe she knows her mama and that if she finishes hers first and then laser focuses her rounded baby blues on my dull browns - which she knows are just caverns that lead to my heart and the button that says “YES” when pushed by baby blues - she will end up with the last bites of my crunchy cone, as well.  She’s not wrong.  Her experience fortifies the belief.

Every once in a while her eyes arc up to one corner and she lets out one of her joyful howls.  I can hear other patrons behind me, but I pay no mind.  So she makes noise.  An ice cream shop is a kid’s place.  All kids make noise.  Not going to worry about that here, not this time.

School starts soon and the rigors of 2nd grade will now allow her much unstructured time.  I just watch and let her shape our visit.  Abruptly, she declares herself finished by pushing her chair back and getting up from the table.  Her face, shirt and shorts are now tye-dyed chocolate.   She dance-steps over to the small space between the freezer and the ordering counter.  Luckily no one else is browsing the flavors or it would have been cramped in there.  She takes a few shuffling steps and stops, looking around to ensure her position is right.  I know what’s coming.  I move my chair a bit so I can see her to my right, but also watch the entrance to my left in case others come to order.  I’ll have to get her to move if and when that happens.  But for now, the space is hers.

Before she begins, she bends her knees, crouches her back and straightens her arms behind her.  It is matched on cue with a grin so powerful her eyes shut completely from cheek pressure.  The third part comes in on time, too – a low to high growl which rises closer to a screech at the end.  It’s loud.  I offer a half-hearted shush, but I’m laughing at her happiness.  People express joy different ways and I get tired of hushing hers just because it’s atypical.  When we are at kid places, she needs to just be free. 

She begins the next level of ice cream shop trip enhancement by laying her head slightly to one side and spinning in a circle.  Her eyes bounce slightly and her lips are tight with focus and pleasure.  She will spin until I intervene.  I will not intervene until and unless others need to enter the space.

As I make my quick reconnaissance of the door to check for others seeking a treat, I see a girl stand up from her table just inside the door, cone in hand, to get a better look at Addie.  She slows her consumption as her eyes widen and lock blinkless on my girl.

Ok.  Back to work for me.  A child loaded with a sudden lump of curiosity is not Armageddon itself, but as a mom of a kid with differences, I must treat it like a suspicious package, at least.   I suit up to detonate it in a controlled and contrived situation so it does not explode into something dangerous, something with casualties – avoidance of my child, prejudice against those with disabilities.

I size up the situation: she’s about 6 or 7 and is flanked by a mother focused on a tiny sibling.  That’s good – working with a child’s curiosity from under the tight grip of a mortified mother who just told their child it’s not polite to stare is doing double-battle.  I am glad the mom does not notice. I was caught unawares in my rapturous observation of my daughter’s joy, so one at a time is better.  The girl’s expression reveals nothing at all as she watches taking slow, rhythmic laps of her ice cream.

What I know: she means no harm.  She did not expect spinning and noises from an 8 year old girl at the ice cream shop.  She may even have seen Addie’s communication device at the table and wondered about that.  If her actions are treated as rudeness, there is risk that she will be reluctant to acknowledge differences of any kind in the future.  My daughter and others will become invisible to her.  No, she is reacting in a natural way to something unexpected.

I realize I need to acknowledge that in a light quick way and then get to what her questions might really be.  But I cannot introduce her to Addie, Addie is busy now.  If I go to talk to her without Addie’s involvement, some of the opportunity to close the gap is wasted, for Addie can make her own self known.  How can I bring the two of these girls on opposite sides of the room together either literally or figuratively?  Even a slight wave of acknowledgement from me might feel like reproach to her and I’ll have squandered the question in her eyes now. 

I look back at Addie.  She spins and squints with love of the moment.  She isn’t dizzy; she knows how to control the speed.  I think in single words and phrases as I watch – beautiful, joy, perfect, whole, lover-of-life…  I glance back at the starer and wonder what words or phrases flash through her mind as she bears witness to the same scene as I do.

I see her mouth open as she turns to her mother. “Hey mom, look at that girl!” Loud and hearty, assured her mom will be impressed by the observation she is about to make about my daughter.

Here it comes, go time.  I remind myself that she means no harm, whatever words she uses to deliver her thoughts, I will hear them as a question and try to answer as best I can.  For the sake of my own sweet different girl and all the others this child will encounter.  This closes my silent pep talk to myself. It is my small prayer to navigate safely between these two children who hold the future in their hands.

I take a subtle step in the girl’s direction. 

“She’s…” the girl continues and I take one more small, barely noticeable step towards her and away from the spinning happy Addie.

“She’s all full of sugar!  Spinning and spinning and spinning!  Maybe a smaller scoop next time!”

My foot pivots, body follows and I step rapidly back to my girl, kneel down and wrap my arms around her.  I squeeze like she just returned to me from far away.  Tight.  She laughs and shimmies in my sudden encircling.  I hug my daughter. 

But that hug was not all hers.  Part of it was meant for another girl.


Good Enough

"I'm good enough, I'm smart enough, and dog-gone it, people like me" - Stuart Smalley, Saturday Night Live.

There are many nights when I lay in bed thinking "I didn't do enough today for my kids."

The guilt of special needs motherhood hangs over me.  There are therapy appointments that I didn't schedule.  Doctors that I didn't call back.  Games that I didn't play with my kids.  Time that I didn't spend one-on-one with each of my boys.  My to-do lists are long and mostly in my head.  My pre-bedtime routine is to run through them all, kicking myself for all that I could have done and should have done that day. 

Thursday night was not one of those nights.

The week started out with the revolving door of therapists in and out for my two youngest boys and the first week of real homework for my oldest.  The days were filled with behavioral goals, game play and 4th grade math and spelling words.  On Wednesday night, my oldest came to me, full of anxiety, telling me he was unable to focus in school anymore.  He was starting the school year lost and he didn't know how to get back. 

Thursday afternoon, I hit the ground running:

- Took my oldest to the doctor and made the next step plan to get him help.  We're going to get some academic testing done to see what kind of learner he is and talked about ways to manage his "worries".

- Went to the elementary school open house, met with Howie's new kindergarten teacher and special education liaison and expressed the things that I was happy about and the things that were still bothering me.

- Ran into the school counselor in the hall and made sure she checked in on my oldest during school time, to have another set off eyes on him and his anxiety.

- Got myself signed up as the parent rep at the preschool to speak with the consultant evaluating their special needs program.

-Met the fourth grade teacher for the first time, soaked in ALL that he's responsible for and followed that up with an e-mail to her asking her to watch for his anxieties. And asked the teacher if he could e-mail her directly when he had questions to give him a safe space - away from peers - to get his questions answered.

-Filled out the kids' picture day forms. Placed them safely in their backpacks so I wouldn't forget in the chaos of a Friday morning.

I put my head down on the pillow that night, and for the first time in...forever...I knew I had done everything I could for my boys that day. 

It was a rare, but wonderful, feeling of peace.  Of knowing that for one night, my to-do list was done.  And I could sleep.

Now if only my kids would sleep too...

"I wont let you go
I wont let you down
I wont give you up

don’t you give up on me now

What do I have to do
To try to make you see
That this is who I am
And its all that I can be
" - Good Enough by Lifehouse

Alysia Butler is a stay at home mom to three boys, two who are now diagnosed with autism spectrum disorder.  When she's obsessing about her to-do lists, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.

Thursday, September 15, 2011

Plants vs. Zombies as Therapy?

My kids love video games—like, REALLY LOVE video games. 

They constantly chatter about the games they like, they always want to play with their friends, and iPad time is the only thing that will motivate Jack, my son with autism, to do things he doesn't want to do.

I've spent a lot of time fighting against letting video games take over their lives. I don't let them play video games during the week, I make sure they get enough outside time, and if they have friends over, I very rarely let them turn on electronics.

I think these are good rules, but I also think that video games aren't the great demon that we sometimes think they are. There are a lot of great things that video games have done for my Jack, but I want to tell you about something that happened just this evening.

My husband was working late, so I had to take all three of my kids with me to back-to-school night. Because I'm not insane, I planned ahead by bringing video games for my kids, reserving the iPad for Jack.

I tried to pay attention to the teacher, but I couldn't help but watch Jack sitting at a desk playing Plants vs. Zombies...with a classmate. They talked to each other. Jack encouraged the other child to place plants on the screen. At one point, Jack handed the iPad to the other child so he could play.

If you are familiar with autistic children, or Jack in particular, you know that conversation, interaction, and sharing with people his own age are a huge deal. I wanted to jump up and down to celebrate. It turns out that if Jack and other kids have common ground, my kid is capable of interacting with his peers.

In fact, they were talking so much that they had to be shushed more than once, and eventually I moved them to a back corner of the room. I should repeat that: someone had to shush my kid because he was being too loud with someone else his age. I don't know if that has ever happened before. I couldn't have been happier.

It's funny what makes special needs parents happy, isn't it?

I have come to terms with video games, not just because of their therapeutic uses—and they do have them—or because my kid will do his homework if I promise him 20 minutes on his DSi, but because it gives Jack common ground with other children. It is something he can be as good at—or better than—as his classmates. It is something that Jack can be obsessed about without seeming weird to other third graders.

Would I prefer that he bond with another child over their shared love of homework? Sure. But that's not going to happen. So instead I'll sit back and enjoy his success with Plants vs. Zombies.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.

Wednesday, September 14, 2011

Being a Good Citizen in the Online World

I belong to a number of online parenting groups. Most of them are related to special needs parenting but I am also in a couple of groups for local moms.

In one of these groups, I recently got involved in a debate on vaccines. I won’t go into detail of the debate, but like these things do, it turned ugly. This was in part my fault because at one point I used the word “responsibility.”

While my statement was not directed at anyone in particular, at least one mom took it personally. I understand. She loves her children and doesn’t want to be judged, and I ended up looking like the bad guy. I absolutely stand by the content my statement, but I felt pretty beat up in the process. I apologized. She didn't.

This incident got me thinking about what it means to be involved in mailing lists, blogs or other online communities.

Groups provide a support network. When you are facing a problem as a parent, it is wonderful to have people give you support and tell you they’ve been there too. As the parent of a child with special needs, I cannot overstate the power of knowing you are not alone. But we don’t grow much by sending virtual hugs.

Most online parenting groups also have an explicit or implicit knowledge sharing component. Again, this is invaluable. If you’re looking to find out the best brand of cloth diaper, or need to know who carries a specific type of chewy tube, parenting groups can be the best source of information. If you are having a problem getting your four year old with autism to sleep, as I did, parents hold an amazing wealth of specific, helpful information.

But inevitably, where there is sharing there is disagreement, and discussions turn into debates. The questions start out innocently enough. “My 6 month old doesn’t fall asleep and we’re at the end of our rope. Does anyone have any tips for sleep training?” Before you can type “Ferber method” the discussion has turned into a debate about whether or not you are a caring parent if you let your kid “cry it out.”

In this example, it seems obvious that we should try to be respectful of other parenting styles and learn what we can from them. But what happens when someone says something that is misleading, false or potentially harmful?

Say, for example, someone makes a statement that it is dangerous to wear a seat belt. She includes a lot of  information about how many seat belt injuries occur each year, the likelihood that she will be in an accident and even an anecdote about someone she knows who was in a car accident, didn’t wear a seatbelt, and walked away without a mark.

Do we, as members of the group, have an obligation to respond to this? Do we have to treat all opinions as equal, or worry about hurting someone’s feelings by telling her that she is wrong or even, yes, irresponsible? People read our posts. Information gets forwarded, quoted elsewhere, discussed over coffee, and influences decisions. And when you are talking about an issue, like vaccines, that enters into the realm of public health, the stakes are even higher.

We have access to more information than we can possibly take in, and our online communities help us filter that information. It is up to us to be good citizens of these communities. That means being supportive, but it also means that when we see dangerous misinformation, we need to respectfully, but unapologetically, point that out.

Have you ever been involved in an out of control online community debate? When do you speak up or choose to let things go?

Tuesday, September 13, 2011

Wait for it

I hate to wait.

No one likes waiting, I suppose. Kids resent the time it takes for Christmas and summer vacation to come. Parenting, of course, is all about waiting, starting with pregnancy (and before, for those to whom conception does not come easily). But for parents of children with special needs, waiting has extra weight, because every minute spent marking time is a minute not spent making things better.

Or so we imagine, anyway, as we wait through the "wait and see" period, wait for a referral, wait for an appointment with a specialist, wait for tests to be scheduled, wait to be notified of results, wait for openings in programs, wait for insurance approvals, wait for teams of professionals to make their recommendations, wait to see if one thing is going to work, wait for a referral to another thing, wait and wait and wait.

Once our kids are school age, there's a whole 'nother layer of waiting, waiting for the first day of school, waiting for our kids to report in when they get home (ha! as if), waiting for notes or calls from teachers, waiting for back-to-school nights, conferences, IEP meetings (ack!), calls from the principal. Once again, our waiting has more urgency than most parents', because we know all too well how important it is to hit the ground running, get modifications and accommodations perfect from the get-go, start communicating with classroom personnel on Day 1, respond quickly to scheduling and personnel problems, stop trouble before it starts. And yet it seems we're always waiting for that shoe to drop.

This week, I'm waiting on a phone call about a glitch in my son's schedule. Last week, I was waiting to find out the timing of his after-school internship, which come to think of it, I'm still not all that sure of. I can't wait until he graduates and I can stop phone-stalking special-ed personnel and worrying about what goes on in that building every day.

But of course, as I've learned with my daughter, graduation doesn't end the waiting. In college, you have to wait a whole semester to see how things are going. You have to wait for accommodations to be approved, wait for grades to get posted, wait for your student to get home safely, wait extra years for remedial classes, wait and see if it's just more marking time to a point where there will be no job. 

The waiting may not really the hardest part, but it certainly seems to be the longest.


Terri Mauro blogs at Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 21-year-old with learning and language disabilities and an 18-year-old with FASD, both adopted from Russia in 1994.

5 Fun & Useful Blogs You Should Check Out

When I write for this blog I try to be helpful. So today I thought I would provide some links that I hope people who read this will enjoy and find useful.

The Positivity Blog ~ The name is pretty self explanatory. Henrik Edberg writes practical posts about simplifying your life, improving your relationships, happiness and productivity.

Nutritious Eats ~ Melanie Flinn is a Registered Dietitian and mom, she has easy to follow healthy and kid friendly recipes.

Whole Life Nutrition ~ I know many people here have children on special diets. This blog is devoted to gluten free recipes using whole foods. With some good ideas for kids like their Honey-Cucumber-Mint Popsicles. My mother recently made their creamy zucchini soup recipe and it was quite good.

Free Things To Do In Chicago ~ I know many of you are not in Chicago, but for those of you who are, this is a fun site that posts something free to do everyday in  Chicago. Sometimes it's a free entry to a museum, free cupcakes, and even free EKGs (that's tomorrow).

Life Ain't For Sissies ~ Linda Edelstein P.h.D., Author and Clinical Psychologist offers "Ideas from psychology that make life better." She has great posts about relationships, midlife, writing and her Monday therapy cartoons always provide a smile. Ok I must confess, she is my mom ;), but everything I said is true.

Let me know what you think.

Monday, September 12, 2011

Special Needs Parents Make Great Medical Patients

I may as well be blunt; I was diagnosed one month ago with breast cancer. I will be getting a bilateral mastectomy soon. It’s a lot to process, but my family and I are handling the news really well and feeling as positive and upbeat as we could under the circumstances.

This is probably due in large part to the fact that my cancer is non-invasive and my lymph nodes are clear. As long as my post surgery report isn’t filled with surprises, my prognosis in the long term couldn’t be better; we caught it early.

I wonder sometimes how parenting Ethan has shaped my ability to cope with such a heavy diagnosis and the impending surgery. Our parenting journey has included some extreme highs and lows, and like many of you, I’ve really been honing my advocacy skills. For instance, I’ve replaced a couple of specialists with people that I’ve had more confidence in, which turned out to be an ordeal each time. It gave me practice in finding the voice that learns how to say, “This isn’t good enough, my child deserves better.”

I’ve also spoken to groups in training sessions at our children’s hospital to help them see the world from a special needs parent perspective. Many of these people are trying their best to be good at their jobs, but just lack the training and tools to deal with children who have developmental disabilities, as well as their often stressed out and exhausted parents. These presentations have helped me develop the voice that says, “You may not understand my child’s behavior, but he deserves your compassion and understanding anyway.”

Now I find myself in the throes of medical appointments, tests, procedures, and surgeries that loom on the horizon. I’ve been channeling the advocate voice a lot lately and feel it has served me well. It has also given me a great deal of perspective. We do a lot of therapies and interventions with our son that may or may not make a difference, but we have to try. With my care, there doesn’t seem to be any gray areas. It’s pretty cut and dry. I will undergo treatment, and then I will be cancer free and fine. I wish it were that simple for my son.

The other evening, my husband and I were discussing everything and how we’re feeling; I couldn’t help but marvel at our coping skills. I mean, we could justifiably be freaking out right now, but we’re not. Then he said “We’re Ethan’s parents. We’ve already learned the lesson that life’s a bitch.”

Seems like that might be true, too. 

Being Accepted

We moved into a new house about a month ago and so far it has been an amazing experience.  Our neighbors have been so welcoming and we know most of the people on our street already and already feel like we have been here for a year instead of a month.  Already, we were to a neighbor's house for a BBQ and to a birthday party for a couple of the children on our block.  Most evenings are spent outside with the many children playing and laughing and the adults chatting nearby.  

All this is great.  Really.  But, for me it gets better.  As the mom of a child with significant physical and communication challenges I will tell you that the most amazing thing about our new neighbors is their immediate acceptance of Emma and they way they include her.  The adults always stop to talk with Emma even though she doesn't talk back.  They are taking the time to learn her subtle communication clues - like how she smiles for yes.  The children are always happy to have Emma play with them and don't mind that playing with her usually means that they will have an extra adult around to help her move.  They love that she can ride her bicycle with them, that she has a wagon they can pull her around in, and that she laughs at all their jokes and cheers in her loud vocalizations for all the shows they put on.  Pretty much, Emma just fits in - just like her older sister.  And this Mama doesn't take that for granted at all!

I was so worried about our move.  There are still things that we are sorting out - like our health insurance and school placement - that, once in place, will have me breathing easier.  But, I know that we found a perfect place for our family for right now and am so thankful

Sunday, September 11, 2011

Living without Dread or Fear

Being that my day to submit to Hopeful Parents falls on the 11th of every month, I knew I would once again have to write on September 11th—a date that has increasingly gained importance as we are now at the 10th anniversary mark of the now infamous events that hijacked our nation’s (false) sense of security.  I’m not typically one that remembers dates much—I barely can recall the exact date I gave birth to my beautiful twins or the birthdays of the favorite people in my life.  So I am not one to remember dreadful dates either—like the day we finally got Sylvie’s diagnosis, or the exact day my beloved grandfather died, or the day I finally put my aged dog to sleep.  I don’t really want to remember these markers of death, not because I live in denial, but because I’d rather remember the living with fondness rather than doom and gloom.  In fact, if I think about my grandfather or dog in their dying moments, I have as much regard for their passing as I do their living—with no regrets.  I said my farewells and I made my peace, and while I was devastated when they left this physical world, I have changed by knowing them.  I also understand, however, that key dates give us pause and allow us to reflect on where we have been and where we are going. When the terror we never envisioned possible becomes a reality, we need to figure out how to reassemble our lives in possibly new and unimagined ways.

I sent my beautiful twins to kindergarten at the beginning of this month.  It’s a much anticipated transition that one could expect would be full of excitement, dread, and regret—both for the parent and child.  But I didn’t’ feel sad or nostalgic or afraid.  Hell, I was just excited that Sylvie had made it to this milestone, given that her prognosis has been so dismal.  My little girl, in her fragile body and with her brittle nervous system is going off to kindergarten with her sister and other kids her age.  Sylvie has been grinning lots since she’s started visiting kindergarten. She knows she’s onto big things—meeting new people, learning new songs, reading new books, and maybe even learning some things that those of us who speak will never fully understand.  After only a week, the other little people in her class are figuring out how to interact with this cute and voiceless child, scrapping to take turns to see who can make her giggle the most.  


Had someone asked me a couple of years ago about Sylvie going to kindergarten, I suppose I would have imagined it purely a fantasy—another cruel joke to torment my broken heart.  After all, we didn’t expect she would live to see the day she would enter a kindergarten classroom.  But as me and their papa dropped our girls off at school, I felt a great sense of relief that we had made this landmark moment.  Yes, it’s a transitional period for both children, and it means my daughters are growing, but it also means that we are not living in constant dread or fear that something horrible will happen to Sylvie when she is not in our presence.  There is a lesson to be learned there, much as there is from the 9/11 events ten years ago.  An individual, a family, a nation frozen in fear and dread is of little use to anyone.  And it’s not a life to be envied or replicated. 

Kirsten works as a professor of Communication Studies at the State University of New York and is the mother of 5 ½ -year old twin girls.


Saturday, September 10, 2011


This summer, an amazing thing happened in our lives: our 9 year-old autistic son Jacob went to (ASD) sleep-away camp for a whole week in late August. And we didn't get that dreaded phone call to come get him because he was falling apart, unable to hack it. He had a great time.

This is the child who clung to me and sobbed when I left him at pre-school.... Who had to have a photo of me taped up in his cubby at Kindergarten, so the teachers could bring him over and point to it when he got sad and called out for me, reminding him that he would be going home to me on the bus in just a few scant hours... The boy who every time we are out and about in the world doing anything, even something he truly loves, will ask, after a few hours, to go home please, telling me that he misses Coco (the cat) and his blue bear.

So knowing all this, why did we dare send him in the first place? Well, we did it for him and we did it for us. For him because he is too dependant about things he actually has the ability to be independent with, but not the inclination; thinking that a week without us would kick-start some self-reliance, push him to take more responsibility for himself, where others are having expectations for him with the bar held high.

We also wanted him to have the confidence that comes with knowing he could spend a week apart from us and survive, and maybe even thrive.  We were hoping he would make friends, would try new things, that the experience would open up his life.

And also? I was terrified. Because while Jake may live in the body of a rather large nine year-old, emotionally and socially he is a LOT more like a four year-old. And you don't send four year-olds off to camp alone.

Also, the camp was a pilot program, being run out of a regular camp, at the end of their regular season. So this was an experiment on all sides. It was set up for "high functioning kids on the autism spectrum" ages 9 to 13, and I was afraid that Jake would have less language and be youngest both physically and emotionally.

We were teetering on the fence about this for a long time: was this the right thing to do, or should we wait another summer.  But I didn't want to underestimate my son, and I wanted to give him this opportunity to grow.

So, with trepidation, a few Sundays ago I loaded up the car with Jacob and a giant black duffle trunk containing a huge portion of his worldly belongings, a full set of medicine & vitamin packs and a detailed description of his GF/CF diet. We had written social stories aplenty, made a special calendar that he could check off each day until it was the next Sunday and he was to come home. Blue bear came with, and he held him the whole ride up. 

It was just Jake and I traveling North to the Berkshires together because his twin brother Ethan was traveling West to another state this same Sunday with their Dad, on his way to an introductory week of sleep-away camp, himself, along with a bunch of his friends. (Remember when I said this was for US, too?)

The whole ride up I chatted away to an unusually quiet Jake in the back seat, talking about camp and how today was Sunday and I was going to leave him there and come back the NEXT Sunday and pick him up. It was impossible to know how much was sinking in or not.

We arrived to be warmly greeted by a lovely staff. There were around a dozen kids in the program, and surprisingly about half were girls. There was a family welcoming ceremony with songs and introductions.

You know you're at Autism Spectrum camp when someone steps up to introduce themselves to a group and says "Hi, I'm Dan" and a voice from the peanut gallery calls out: "You're short!" (He was.)

Toward the end of the ceremony, Jake turned to me and asked, calmly, "Are you going now, Mom?" So I guess he understood, after all. I told him I was not leaving quite yet, that all the mommies and daddies would be kissing their kids goodbye at once and then he would go off with his counselors to settle into his bunk and begin the fun.

And when the time came, that's exactly what happened. A big kiss and hug, a wave, and goodbye, Jake. Wow. Someone had tears in their eyes, and it wasn't the boy.

I got a call the next day, and nearly had a heart attack because I got to my phone just as it rolled into voicemail. But it turned out to be a courtesy call, wanting to reassure us that all was fine, share that Jake had settled in well and was happily having fun.

Like all modern camps these days, photos posted daily to their website and we were able to see our boy swimming, dancing, sculpting, playing games, playing drums. Sometimes smiling and laughing sometimes looking a little lost inside himself, but never scowling, unhappy.

How strange it felt to not have him home, how many extra hours I had in my day to get things done, how unstructured my evenings became -- which was both exhilarating and vaguely un-mooring; that's another story for another day.

And then, when it was time to pick him up, he ran to Ethan and I beaming, happy to see us, but turning and waving goodbye to his new friends, too. A happy, tired boy, my little fledgling, one step closer to becoming the young man he will someday be.

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.

Friday, September 9, 2011

Passing the blame

My younger son Fudge is still working on the very hard journey of attachment, on a daily basis he pushes me away because he is afraid that I will leave him like all the other people that he has loved and lost. On an intellectual level I understand what is happening but it is harder to make my heart understand. It hurts to be rejected by a child who you pour all your energy into loving and helping to heal, a child who is wanted, a child who is loved. 

Some days I do not think that I can handle one more minute of being pushed away and that I am going to explode, I often do, at him, which gets us no where. He has the ability to fixate on an issue and drive me crazy by talking about the issue non stop. In my calm and patient moments though I am able to respond to him in a way that is helpful, a way that will help him learn to trust and occasionally a way that totally passes the blame to his father and gets me out of the loop altogether which was the case the at breakfast the other day. 

Fudge was nattering at me about his desire for a screen to play video games on, any screen would do, pick any video game platform and give it Fudge and he is happy. The problem is he is also an addict and given the choice he will only play video games and do nothing else. Our solution is no videao games in the house, at all, period. My partner and I both agree that this is the best choice for our kids right now and neither of us is really willing to bend on the subject even though he frequently tries to convinve us that he is a poor deprived child because he lacks a Wii or his own IPad. 

So at breakfast he awas going on about his need for games and I looked at him and said with a completley straight face and zero sympathy, "you do know that Dad is the one who says no video games and since he feels that way I support him because we are your parents and we work together."

Fudge stared at me open mouthed for a minute, while I enjoyed the fact that he was speechless and that for once something was not my fault, therefore we would not need to fight about it. Then he started to talk and I continued to place the blame for the video game ban squarely all on his fathers shoulders. 

As soon as P walked into the room Fudge started in on him about how he knew it was all Dad's fault and luckily for me P totally accepted all the blame. It was a bit of brilliance on my part, fight avoided, Mom is not the bad parent this time and Dad handled it all with grace. 

Perhaps I should pass the blame on to someone else a little more often...

J. blogs at Stellar Parenting 101 where she is occasionally aware that the 8th day and the 9th day of the month are not interchangeable although she sometimes wishes that they were. 



Tuesday, September 6, 2011

Don't Let Your Babies Grow up to be Couch Potatoes

I hate to break it to you, but your preschooler watching Sponge Bob Square Pants that's not a good thing.  Your cute little child that is now sitting in front of the TV screen will one day turn into a teenager that will want to watch You Tube and anime movies all day.

I remember the days when Jacob was little.  Such a beautiful boy and such challenging behaviors.  His bright blue eyes beautifully accentuated his golden blonde hair.  But that sweet angelic face masked the challenges that lie within his small little body.  I look at pictures of him when he had just turned 5 and I remember thinking back then that he if only he wasn't so challenging, if he could just do what people told him to do, maybe he could give modeling or acting a try.  The behaviors caused by his autism prevented that from even being a remote possibility, but I've never let that bother me.  Jacob is a terrific young man who will find his way one day.  Hollywood probalby would have not been a positive influence anyway.

Jacob was an in between kid that his behaviors were too distracting for a class of typical peers but a class that had more impacted kids was not appropriate either.  Finding the right preschool proved to be really difficult.  The LAUSD classes didn't really have any with peers that were at Jacob's developmental age and without an aide in the classroom, Jacob couldn't attend any private schools.  I searched every promising preschool within a 10 mile radius that I thought would be a good fit and would accept Jacob with a one-on-one, and  I finally located an excellent one in Santa Monica.  By chance and with a lot of phone calls, I also found a young woman that had been a teacher at one of them and she was now looking to work as a private behavioral aide.  She turned into a lifeline to being in a mainstream classroom for Jacob. After preshcool, she stayed with him for an additional year through kindergarden; during her time with him, Jacob never had any major disciplinary problems and even developed a few friendships along the way.  

Looking back, I know how lucky both Jacob and I were.  Along with his aide, Jacob's public elementary school always supported him.  For a while, LAUSD even paid for private speech therapy and gave him high quality occupational therapy on site at school.  The district occupational therapist that worked at Jacob's school when he started first grade was really amazing.  To the first IEP that she attended, she came with a OT catalog and said she was going to order a weighted vest for him to wear in the classroom.  She also showed me how to do OT techniques at home, gave me additional reading material on senory integration, and even set up a sensory room in an empty classroom at the school.  She was supportive in every way and always inciteful about what Jacob needed at the time.  When I hear that the school is as good as when Jacob attended, I am even more appreciative to everyone that worked so many hours with him. Back then, he could a handful, but Jacob was liked just enough by peers, teachers and administrators in spite of it.  

I also made sure I did what I could to help the teachers and the school.  I figured if my son was going to make life difficult for the people that worked with everyday, they better like me too.  I thought that if I voluteered to drive on fieldtrips, helped to organize the class parties, got a lot of stuff donated and wrote he catalog for the school's silent auction fundraisers, the teachers and administrators would be more understanding of Jacob when he was being challenging.  I know it made a difference for the better. Jacob was always accepted and never ostrasized, even on his most unrewarding days.

This was Jacob.  A gorgeous cherub-faced youngster with behaviors that were not severe but challenging enough that he required to be monitored constantly.   So what is the perfect thing to help calm a child that wants to explore and get into stuff when you just want to get something finished, like balance your checkbook or do the laundry?  Thomas the Tank Engine, that's who.  And don't forget his friends Barney, The Wiggles (which I have to admit I kind of liked), Dora the Explorer, and many others that I can't even begin to remember.  And all innocent enough, at least I thought at the time.

Now fast forward twelve years later, and Jacob is just a few weeks shy of turning 18.  And what is his favorite thing to do - watch TV, videos and You Tube.  Yes, he's graduated from Disney videos to Seinfeld, Curb Your Enthusiasm, Tropic Thunder, and too many Japanese animated videos to mention. Some I like too. We're both fans of the Big Lubowski, and for his next birthday, he's going to watch the movie with some friends then go bowling at the alley down the street.  

It's not all completely bad.  We like a few of the same shows and sharing tiime watching these together is a ritual in our house.  We both love Futurama and Community, and Jacob enjoys viewing them with Doug and I.   Watching quality television is something I really like, but it's probably not a positive thing to get my obsessive compulsive soon-to-be 18 year old son in the habit of even more TV shows, no matter how good I think they are.  Still, I'm glad that we can share something together that we both really enjoy.

Back then, had the Magic 8 ball shown me the Jacob of today, I know I would have turned off the TV and played with him.  Always.  I was a stay-at-home Mom, so I had the luxury of time.  But back then, I thought, a little TV what won't hurt.  But it did.  My cute little boy grew into a not so cute teenager who has grown into a slightly overweight young adult that has become obsessed to electronic forms of entertainment.  Letting Jacob watch a little Sesame Street when he was little, I thought how bad could that be.  But the habit of spending time in front of a video screen or computer monitor, it's mushroomed into an addiction that has sucked Jacob in.  It happens to typical kids all the time.  Just throw in some social communication challenges and the alure of the video and the internet, something that does the same thing the same way all time and isn't unpredictable like people, it'll absorb your child's attention more and more.   And as the habit grows into an addiction, it'll become more and more intense as the years fly by.

So, to all the Moms of the world with the adorable 3 year old child with autism, TURN OFF THE TV!  Play with your son.  When he gets overwhelmed, stop and give me a break, then play some more for as long as you can.  Forget about washing the dishes, opening the mail, or making one last call before bed.  Everyday for as long as you can stand it, have your child spend the majority of his time with you doing anything with you besides sitting in front of the boob tube.   I promise, you won't regret it.


When Susan isn't waiting until the last minute to write her monthly contribution to Hopeful Parents, she is Program Director of the College Interhnship Program in Long Beach.  Her son, Jacob, started 11th grade at Culver City High School today.

Sailing the good ship autism...

This weekend I left Billy for the second night in his lifetime.

It was odd.

For me. He was fine. The homefront was stable with Daddy and the dog and the same dinner he always has, and he was just fine. I feel great about this (a little irrationally miffed, but I’ll get over it) because it opens up a whole new world for me.

And that raises a question. Who am I as a person now?

As I stood in a theatre foyer (more about why in a sec) clutching a glass of champagne (ugh… but it’s alcohol) I was utterly discombobulated.

I didn’t have anyone to check on. I didn’t have anyone to worry about. I wasn’t fishing in my handbag for trains or snacks (hell, I didn’t even have a handbag). I wasn’t thinking about how long we could push it before I’d have to force anyone to go to the toilet lest the lack of replacement underpants in the already lacking handbag became a glaring issue to all around me.

I was released from parenting duty, and almost released from special needs parenting duty… it was equal parts thrilling and depressing.

Thrilling, for the late night room service I was planning on ordering from the hotel and eating in the empty fluffy bed with a TV not playing animal documentaries or Phineas and Ferb.

Depressing, because it really brought home how much my life has become about avoiding disaster. Without a looming Titanic style collision between autism and the world, I was really unsure what to do with myself. People coughed (Billy’s biggest threat) and I braced for the tears. People screamed happy greetings to each other and I had my hands ready to cover a pair of little ears. The theatre itself was big and echo-y and cold, and I was on edge despite the fact that none of those things actually bother me.

Clearly, I need to alter my focus from the Titanic to yachting safely somewhere in the sunny South Pacific.

Now, the reason I was lurching about in unfamiliar waters was something quite special.

A couple of years ago, to mark the opening of the Asia Pacific Autism Conference here in Sydney, I wrote a song called Through My Eyes. I should clarify that I wrote the lyrics, not the music, that was written by the lovely Fiona Johnson. My musical ability rates somewhere above my salsa dancing ability. And if you’ve met me in real life, you will keenly understand how far down in the bowels of hell you would have to be to witness a meeting between me and salsa dance.

The song was first recorded by the wonderful Thanh Bui, who sang it live at the conference with a choir of children from a groundbreaking school called St Lucy’s here in Sydney. Thanh has also recorded a Vietnamese language version for release in Vietnam in 2011. Next it was recorded in the UK, by Scott James, a truly extraordinary young man with Aspergers who braved the slings and arrows of X-Factor in the UK to bring the world to tears with the beauty of his voice.

On Saturday night, Through My Eyes was sung by a choir of children from the Hunter Autism School. They were accompanied by a beautiful singer called Amanda Streete, and the choir from Newcastle University.

From the moment I saw the kids’ stage places marked with smiling photos, I started blubbering. When they came on stage, and sang with their hearts and their hands and their beautiful spirits, I lost it completely. Some kids cried, some kids grimaced, some kids yelled at the top of their voices.

And I cried, and cried and cried. And I wasn’t alone.

It reminded me why I’ve become someone who feels like I’m coordinating the gradual defusing of an underwater minefield.

It’s because these kids are beyond precious. They are invaluable. They are impressive. They are immediate and honest and full of integrity. And, for what it’s worth, they are pretty awesome singers.

I know for sure, I am not the best mother I could be. I’m navigating my way through rough waters some days. But if one attempt at protecting Billy from the assaults of the world results in retaining his self-belief, then I know I’m doing the future a favour.

And as an added bonus, I am gathering quite the collection of cheesy seafaring metaphors.

Until next month, ‘Arrrrrrr, me hearties!’

(Sorry. I couldn’t resist)



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

If you want to read even more of her words, try The Autism Experience (a book with lots of other autism mothers’ words in it as well).

Monday, September 5, 2011

What I learned from some First graders about acceptance

Small kids are usually accepting of differences.

This is what most of my friends tell me

But, they also need to be explained the reason for these differences, in order for social interaction to happen 

A friend of mine with with a neurotypical daughter gave me this valuable insight. She  said that she had showed her daughter that she should reach out to one of her classmates who has autism. Until then her daughter( a very kind and sweer child )  had never considered the possibility, that a child that did not reach out - could have wanted friends - and just did not know how to. 

DH and I thought it would be good to talk  R’s classmates about R – his differences and the reasons for these differences – in order to help R be more accepted to and maybe even socially  interacted with  in his class . ( without any mention of any diagnoses of course )

So one hot Friday afternoon – armed with popsicles – we set out to talk to his class

We sat in a shady spot  - the kids in a circle – and us with them too ( me, quashing any qualms about what the grass was doing to my silk dress from work )

We handed out the popsicles and were clearly too slow as a couple of the kids bleated from the back  -“Why did I and L not get any popsicles?”

After they were assured that they were not being persecuted,  we asked them if they knew who we were

Kids “R’s Parents” “R’s Mom and Dad

Us : How do you know ?

Kids : “Because his dad drops him in the morning ?

Us : “Do you all know R ?”

Kids : Yes Yes Yes!

Us : “What do you know about him

Kids answer

He is a cool kid “

“He is very quiet”

“He is a nice boy”

I feel  little tears pricking at the back of my eyes

Us : Have you noticed anything different about him?


One boy from the back “ He has a lot of things written down on his desk .. he reads those things and then he does those things”

Us : Do you know why he does that ?

17 heads were shaken to indicate no

US: “Do you know something special about R .. he could read when he was 3 years old ? But he only started to speak a year ago. So reading has always been easier to him. You can hear something and do it .. but its easier for him when its written down ”

Kids nod heads 

One boy boasts  : I could read when I was only 9 years old (all the kids are  6-7 years old by the way – but we decided to not nitpick at this chronological confusion  )

One kid : Sometimes he moves his hands like this .. why does he do  that ?

Us : We use  the wonderful Mom –nos’s example “ when you sit for a very long time .. do your feet feel all funny “

Kids  chorus: yes yes yes ( one dissenting voice says – “mine never do” – but we ignore it as its clearly an attempt at attention  )

Us : What do you do when you feel that away?

Kids : “All tingly” .. “we shake our leg” “we walk

Us : Well , some children’s body can feel that way all the time and so they need shake their body from time to time so they can feel okay

Kids : oh

His teacher says : “Do you remember when we read the book about how everybody is different  … how some children learn differently … and we need to accept them ?”

One angelic-looking ghoul chimes up : “Is that they one where everybody’s head got chopped up in the end ?” she adds with satisfaction .. “into little pieces “

Teacher turns to us hastily and assures us that no books on massacres are being read in First grade

She turns to the class; “No the book where we learned that children learn differently ..

Kids : Yes

Teacher : “And how can we be friends with R ? We can talk to him about the things he is interested in ..”

She points to the book. This is a "book" we written  on R( . We  have handed out two copies to the kids

( basically the book comprises – a picture and a sentence per page and talks about all the cool things about R.  And also adds that he is only now learning how to talk and make friends.)

Teacher continues: “Like words and numbers and that is what we are learning in First grade.. and we need to be patient”

She turns to us “ I need to go inside to get the waste paper basket for the popsicles ..can you wait here “

Once she leaves, the kids assure us “You know how good R is .. he has never got a pink slip”

Another kids “Well its actually a red slip “

Dissent breaks out as to exactly what color it is.

But the general consensus is that it’s a VERY.BAD.THING to get

The kids explain all the laws of the "slips" – and there is clearly a lot of confusion- but apparentlyslips and the fear of getting them is a primary force in their young lives.

As they chatter on, it occurs to me, that each child is really most concerned about their own life and not getting into trouble themselves.

And that they ,do not really spend all day thinking about R and his differences.

Its an obvious truth but something I did not realize- and its very comforting

( its like realizing after you spend all your high-school years wondering what-everyone-thought-of-you. Only to realise that everyone was too busy wondering what-everyone-thought-of-them) 

Kids say pointedly  : “We have given R some compliments today

And I remember they are doing this in their school – this chain of giving compliments

US : “Well we want to give you a compliment too .. you guys are amazing

We tell his teacher and his resource room teacher that we were so worried that R would get picked on .

 And instead these kids are so accepting and just plain nice !

And they assure us that it never happens here – even in the more grown up classes

Sometimes as they grow up, in fact they get too protective and wont let the teacher correct the child

I assure them fervently that if THAT is the problem we have to worry about , we will be very grateful to them and the kids and the parents of the kids who are raising them !

Of course, things are far from perfect for R socially

For R, friendship with peers ( for he has many great  relationships with grown ups and is intensely doted upon and adored by many  ) is his biggest challenge.

He has no friends his age.And has neither the know-why, nor the know-how of friendship

( And I am always reminded of this uncomfortably when I read R’s favorite bed time story these days – “Lizzy’s Friends”- story of a child with no friends - alone everywhere.

Lizzy makes friends with the paper toys she makes through Origami and imagines they are alive.

Each night as I read R the story of Lizzy ,  I tell R that the giant pile of books by his nightstand are his friends like Lizzy’s paper toys are hers. It gives me a great pang.

As my friends -you guys  online and inlife – mean so much to me )

While I am very aware of all of these challenges 

To know, that when he goes to school, he goes into an atmosphere of casual acceptance , means so much.

Thank you first graders

Thank you teachers for teaching acceptance in your classrooms 

Thank you parents who are raising these great kids.

This post has been written by Floortime Lite Mama - mother to charming R - 6 year old with Autism and Apraxia who blogs here


Thursday, September 1, 2011

What I Learned on Summer "Vacation" - healthcare notes

“Didja miss me?”  I’ve missed the last two blogs because my daughter had her kidney transplant!  Despite having a fantastic hospital and TRIPLE (private, Medicare, Medicaid) insurance, I actually took notes when we hit snags in the process to hopefully help other parents down the road.  Lessons learned:
Night Shift… & general child stress
   Hospitals and insurance companies will assume a child with a developmental disability can be left unsupervised and sleeps through the night.  My child who is also autistic, had 24 staples, multiple IVs, and central cardiac line, and foley catheter and it was originally thought she could be checked once an hour-until they brought someone in because we wouldn’t leave… and they were believers the next morning because she was up all night even with Benedryl and pain killers.  Lesson:  If you child has special needs, they may require extra supervision, especially overnight.   NOTE:  Hospitals also usually have “Child Life” departments which will help your child if they’re scared about a procedure, especially if they have special needs.  They’ll come in with puppets or dolls and show the child what to expect.
   We stayed an extra day to make sure we had home nursing (in writing) so we could sleep at night but when we got home the agency said it was denied by all insurance plans!   We appealed and won, only had a few hours sleep each night for almost a week until it went through.  Lesson:  Even if it’s in the discharge plan, set up the actual nursing coverage with the agency before going home.  Also, appeal if you’re told no so make sure you get the denial in writing, not just over the phone.  

   Make sure you have as much in place as possible and a written discharge plan with care instructions.  Besides home nursing and homebound instruction (see below), there are practical things you can do.  For example, my daughter was on 10-20 medications 4 times a day, plus we needed to be isolated 6 weeks, so we set up pharmacy home delivery.  Make sure you know how to give the medications and if there are any side effects.  If you child was already on medication, ask which if any, to continue besides the new ones and if there is anything (e.g. food) that would affect it.   We also used an online tool to create a meds.  chart (which we also now copy for doctor visits), a pill organizer, and a checklist to fill it.  
   Other practical considerations are things like if the child can have a bath or shower, if not what to do (no rinse soap or shampoo), and if so how to do it (how do you wash around stitches?)  Make sure your child has no problems with the usual bodily functions such as elimination, eating, etc. before leaving the hospital.  While you’re at it, ask if your child’s diet needs to change.  Find out if there’s anything they’d like you to keep track of at home such as blood pressure, weight, temperature, measuring intake/output, etc. and that you know how to do this and have accurate equipment.  For example, we got a digital scale and asked the pharmacist for help with a blood pressure cuff, quick thermometer like the one the nurses used, etc.  and actually got everything before we left the hospital.

   Kidney transplant patients get put on Medicare Part A (hospital) and B (clinic, immunosuppressive drugs).  If there is other private insurance for the first 30 mos., Medicare is secondary, then primary last 6 months, then discontinued.  If patient also has Medicaid, they are autoassigned to a Medicare Part D prescription plan and only find out when they get a card in the mail.  Parents must call Medicare to opt out of Part D and also disenroll by calling the plan (be prepared to prove you are the legal decision-maker because I couldn’t believe I had to put a developmentally disabled teen on the phone so to say “It’s ok to talk to Mommy” so then faxed them guardianship.  NOTE:  Medicare, SSI, Medicare Part D plan, Medicare Coordination of Benefits all need this separately because the systems don’t link).  Be careful to check with the Human Resources Dept. of your employer because Part D could void private prescription and medical coverage.  Also, if you have Part D, Medicaid will put your child into a “limited benefit pharmacy wraparound program” which in our state only covers benzodiazepines, barbiturates, and OTC (over the counter) meds.  like vitamins, aspirin, etc.  I found that the Medicare national number (open 24 hrs.) and SHIP (State Health Insurance Program) Medicare counselors were very helpful.

   If your state is switching from traditional “fee for service” Medicaid to managed care, make sure you don’t get “autoassigned” to an HMO.  You need to check if each doctor, not just practice or hospital, is listed either the HMO.  If your child gets care outside of your state of residence, you may also need to get a Medicaid “out of state authorization”.  Also, pharmacies aren’t included in the out of state authorization so stay local for meds.  And even pharmacies that take Medicaid fee-for-service, may not accept Medicaid HMOs.  

-“Coordination of Benefits”
   Doctors, hospitals, and pharmacies have a hard time billing private, then Medicare, then Medicaid.  Also there was massive confusion in our case because our private insurance has the same name as the Medicaid HMO, and our private prescription plan has the same name as a Medicare Part D prescription plan!  Usually private insurance is first, Medicare second, and Medicaid is always last.  Don’t pay bills until you’ve checked that all insurance was billed first.

Home Instruction
   Besides a doctor’s note, you may need your doctor to fill out additional paperwork.  Parents may also be asked to sign a HIPAA (health information privacy) release form so you need to decide if you want the school to have access to all of your child’s medical records or just some, if any, and for what time period.  Also it may take some time for the school to set up home instruction so give them as much notice as possible beforehand in writing, especially if the surgery is planned and you know the dates you’ll need.  If you have concerns setting up home instruction, contact your Parent Training and Information Center.

Medication tools

National Medicare Office  or 24 hr. hotline (800)633-4227

SHIP (State Health Insurance Assistance Program) Counselors for Medicare

Centers for Medicaid/Medicare “Who Pays First” guide on insurance (private/Medicaid/Medicare)

Parent Training and Information Centers (special education)

Lastly, figure out how to get all the balloons home in the car!         
Remain Hopeful,   Lauren