Wednesday, February 29, 2012

Tears of a special needs sib

So, a couple of years ago we took our daughter who has Asperger's out of school. She'd been having a really hard time. Once we saw it was going okay, we took our mostly typical son out as well. 

Last week at homeschool co-op I was helping to teach a class on cup stacking. Cup stacking. It is all the rage, and I've rarely seen so many kids so engaged. They love it. A couple of weeks into the session, a new kid joined our group. His mother didn't mention it to me, and I don't know if he's diagnosed, but he's clearly "one of ours." He was having a really hard time. He was intimidated that the rest of the kids were more advanced. He got into a scuffle with one of the other boys over something minor. He stormed off and we had to find his mother to come tend to him. He scowled and paced, and was not a very happy camper. My heart went out to him. 

The other teacher and I made a quick decision to make the last relay simple, one he could partake in easily. We wanted him to rejoin the group and leave on a high note. Both of us are special needs moms and we know how important that is. He agreed to join in.  

The kids were to decide what order they would go in. My son wanted "second." He raised his hand first. Our new guy also wanted second. There was some debate over it, and I could see the new guy ramping up again. I know my son. He is easy going. He's been dealing with his sister for 9 years. I took him by the shoulders and physically moved him into "third" position, and continued with the instructions. I thought he could handle it, but guess what? He couldn't. 

He cried. And then he tried to pretend that he'd hurt his arm, because he knew it wasn't cool to cry over something so silly. Once again, he had to take the back seat to a kid with special needs, and once again his mom just assumed he'd suck it up, (and he's got his own issues going on with PANDAS and he's extra sensitive lately), and he simply could not take it anymore, always having to be the one who bends. 

When we got home, I apologized. I held him for a long time on my bed, telling him how much I appreciate him, and how sorry I was that I had not considered his feelings. He's a big nine year old now, but he let me hold him and stroke his hair and love him up. We were quiet for a long time. 

I feel like I can never do enough for him. 

I hope it is enough. 


Michelle O'Neil has written for many publications, including two special needs anthologies, and a professional journal for occupational therapists. She blogs at

Tuesday, February 28, 2012

Looking for a Fix

I used to think that the two worst words for a parent of a child with special needs to hear were...

"Prior Authorization"

Lately, I have discovered a more loathsome word pairing.....

"Drug Shortage"

In the past 6 months, I have called and visited more pharmacies and doctor's offices than a drug rep from Pfizer.

I am the mother of a child diagnosed with severe ADHD.

I have searched the Internet, the neighborhood and the state for the last remaining handfuls of Ritalin.

Since ADHD medications are narcotics, Massachusetts law requires me to physically pick up a prescription each month from our pediatrician. Phoning or faxing prescriptions to the pharmacy is not allowed.

With all supplies of Ritalin on back order, only a few pharmacies have any in stock. Those who do have it available, have only a few dosage strengths left. As a result, I must first find a pharmacy that has meds available and then visit with our primary care doctor again so he can rewrite prescription after prescription for the "most available" dosage. I need to do this every month.

I am in his office so often, his staff is beginning to think I am a hypochondriac.

I have frequented so many pharmacies, my photo is on their list of potential drug abusers.

I feel like a crack addict.

But my efforts have been futile and it is my child who is suffering.

I am overwhelmingly aware that many folks do not recognize ADHD as a real disorder. Current dogma persuasively perpetuates the belief that ADHD is nothing more than a label used by lazy and delinquent parents to disguise what is just the end result of poor parenting.

Instead of providing my child with dangerous medications, all I really need to do is cut out sugar and dyes from his diet, add vitamins and fish oils, outlaw video games, employ stricter punishment tactics and my son would be miraculously cured.

It is surprising to me, how this distorted philosophy is so often regurgitated by those who do not have children diagnosed with this condition.

ADHD is a real disorder.

I have seen firsthand what it can do to a child.

It is not caused by parental failure or an inherent "badness" in a child.

It is caused by a brain that is not functioning properly.

It is inherited.

And it is indeed real.

My son has struggled to be successful in school. His restless energy and lack of impulse control have effected his ability to maintain friendships and build long lasting relationships. He is judged, scorned, disciplined and outcast by the world.

Students, teachers, administrators, and parents alike, often do not embrace Weston's unique personality. He is not valued. He is not understood. A steady stream of punishment and negative feedback has transformed my once happy and carefree spirit into a sullen and moody pre-teen who questions his worth in the world.

My son's meds have saved his life.

They have enabled him to learn, to succeed and to live happily in this world.

I have witnessed this successful transformation and the overwhelming positive results of what an appropriate medication treatment can do for a child who struggles from mental health issues.

Denying him treatment, is to me, nothing short of child abuse, no worse than a parent who denies their child treatment for cancer or diabetes.

And so, as his mother, I continue to search for answers.

Why are the medications that will help my son being withheld?

Ask the drug companies and they will tell you that in an effort to control illegal distribution of ADHD meds (to college students and the like) the Drug Enforcement Agency (DEA) sets a "quota" for distribution. Once the yearly quota is met, no more meds are distributed, regardless of public demand

The DEA will tell you that they need to set these quotas to control the illegal distribution and misuse of ADHD medications. They blame drug companies for convincing physicians to unnecessarily prescribe these substances thereby inflating their markets and increasing their profits.

President Obama will tell you he has asked the FDA to look into it and has worked with Congress to sign legislation to prevent this issue.

Ask the FDA and they will tell you they do everything "within their legal authority" to prevent drug shortages.

ADHD experts like Dr Russell Barkley and Dr. Ed Hallowell will tell you that ADHD is actually under diagnosed in this country with many children and adults suffering from the effects of untreated illness.

They will tell you that currently there is no blood test or brain scan tool to use as a means of diagnosing this disorder. The only way to determine if a child (or adult) has ADHD is to treat them with medication. If medications work, the patient has ADHD.  Predicting a yearly quota of just who and how many will seek treatment is an unrealistic expectation.

Does this all sound like madness to you?

Are parents of children diagnosed with ADHD and cramming college students really our biggest drug threat?

All these departments, companies, and federal agencies are talking, but no one is telling me anything.

In the meantime, my child has not received the medication he deserves to treat his illness.

How can this happen?

What would public outcry look like if supplies of insulin were withheld?

And what do you suppose is going to happen once medications are available? The fear of stockpiling now becomes a reality.

I was told that all supplies would be back to normal by the first of the year.

It is now almost March, and I still cannot find the appropriate "prescribed" medication for my child.

I am beginning to consider using these "illegal" distribution channels, or perhaps a few college campuses?

Of course I can just see the headlines now.....

"Special Needs Mother Wanders Streets of Boston Looking for a Fix"


To read more about our family adventures, please visit us at

Monday, February 27, 2012

Put Your Hands to Rest

Here is a poem for all you mothers out there.  Dads too :).  We all need to hear these words sometimes.


Hey now,

hey now,

be gentle with yourself-

mothers of this special world.


You too, are special-

chosen to make peace

with this uncharted path.

Put your busy hands to rest.

Tell the nagging critic to step aside.

You have done enough for today,

guilt moves you nowhere.

Go inside, dear one,

where labels don’t matter.


Did you hear me?


Wrap your arms around yourself

and say out loud:

I am enough,

I Am Enough,


Jennie Linthorst, MA, CAPF, is a therapeutic writing coach and the founder of LifeSPEAKS Poetry Therapy.  She works privately with men and women helping them tell their stories and heal, through reading and writing poetry and personal essays. Jennie coaches clients all across the country and around the world via phone, Skype, e-mail, in addition to in person meetings. She is the author of a book of poems, Autism Disrupted: A Mother's Journey of Hope. Her family’s story is captured in the award-winning documentary film, “Autistic-Like: Graham’s Story”.

Sunday, February 26, 2012

Self-acceptance, as taught by my two-year-old

I had written the following prior to Julia's but I guess it's a good theme/topic to stick with...

Today is the second birthday of my daughter, Eliza. Like her oldest sister, Gwen, Eliza has cerebral palsy. Birthdays in our household are a time of celebration and reflection.

We reflect on the milestones over the past year, our best memories and our victories of adjusting to life with three children (Violet is my rambunctious three-year old). As I focus on the celebration at hand, one thing is clear to me: Eliza's cares are the same as any other two year-old child.  

She loves being included with her sisters and enjoying the happiest moments in her little life. Very little causes her to be upset. She seems to be forgetting about her brain injury, even though that's tough for me to do. The realization of this teaches me that my losses are not hers.  

When I thumb through her one-year photo album (yes, they still exist), I see her eyes are brighter than a year ago, her smile is bigger and her life is more fulfilling in many ways. She contributes to sisterhood and our family in ways I never could have imagined.

A year ago, I was still grieving over who I thought I had lost because of her disabilities – a road that I that is familiar to me because of my oldest child with CP.   

Today, I'm prepared to focus on celebrating two years of her life – the exact moment and the feelings I embraced as she was arrived in the world – while my memories of the darkest days and her medical accident are getting shorter (and less vivid).

She, on the other hand, watches Sesame Street, loves Elmo and couldn't care less about these kinds of adult thoughts and emotions. Eliza has and continues to teach me that children are always fine with who they are. At two years old they accept themselves 100 percent.

What a relief it would be for me if I could have that kind of acceptance for myself all of the time, as well as for all others.  Acceptance is so tricky. The slightest words or events can cause anger, hatred or even worse - violence.

If Eliza could talk, I bet she'd tell me “No matter how tough your life starts out or currently is, it gets so much easier when you begin accepting yourself, even before accepting others.”

As I witness her little beautiful life, I can't help but remember the significance of self-acceptance for all of us - big and small.

With that said, I must thank Eliza and wish her a very happy birthday.

Tim Gort is a writer, public speaker and advocate for special needs children, their families and those affected by medical errors. He writes about being the father of three children, two with cerebral palsy, at his blog and is a healthcare consultant on patient-centered care.


Saturday, February 25, 2012

Finding a Tribe

Today my daughter is enjoying a Girl Scouts Camporee. It’s a weekend trip to a camp nearby with cabins and it’s with other troops in our area. This is her 3rd Camporee.

It's the first Camporee with her new troop. Her tribe, you might say. 

Her experience with the old troop wasn’t horrific. It also wasn’t what you want Girl Scouts to be for your child. The pace moved too fast for her, she often felt left out, there were girls who were mean to her and there was too much pushing for independence on things she wasn’t capable of doing without help, thereby making her just feel bad about herself.

So last year she made the decision to change troops and return to a troop she’d been a part of when she was a Daisy Girl Scout at her special needs school when she was five. Many of the same girls are in the troop still and it was an easy decision. It became clear after a “test run” sleepover with the troop last May.

When I picked her up from the sleepover she said, “I have more friends in this troop than I do in my whole school!” 

That is a beautiful thing and a sad thing at the same time.

We've been talking about her differences (I wrote about it on Hopeful Parents last month and my blog before that) a lot and we're still working through a lot, but recently we saw some progress towards acceptance. Acceptance of herself.

A friend recently asked her if it was time to order Girl Scout cookies as they had the previous 2 years while in her other troop. Surprisingly she said, “No, my new troop doesn’t do that because our troop has a lot of girls with disabilities and it is too hard for us.” 

She didn't say it with sadness or embarrassment. She was saying it as a matter of fact. That day, she embraced a little bit of herself with that statement and she staked claim to her tribe.


I blog at Kidneys and Eyes, and co-founded a social network for special needs families at Support for Special Needs



Thursday, February 23, 2012


A week ago a blog of mine was picked up by the Huffington Post. It was about the lack of friends in my son Ben's life -- and research showing that isolation is a significant problem for our children, particularly in the teen years, when their social world shrinks instead of expanding.

It's not a topic that anyone likes to talk about. Who wants to admit that their child has no friends?

It really hit me a couple of years ago when I was programming a voice device for Ben and couldn't think of a single authentic friend to include on the friends' page. And this for a boy who has always expressed his desire for friends, and was capable of having some as a younger child.

Over 750 people commented on the post, which tells me that friendship is something we value, that many people struggle with it -- disability or not -- and that this is a big issue.

There were many suggestions: build your child's interests because friendship is based on common interest; join with other parents of kids with disabilities to promote friendships or reach out to programs for kids with disabilities – especially overnight camps – where your child may be better understood; get a service dog; seek out people with alternative lifestyles; use the internet to break barriers, either by setting up a blog or Facebook page.

A number of people were adamant that typical children can never have authentic relationships with our kids, and that they shouldn't be 'forced' to. Even some seasoned parents of kids with disabilities agree: “No matter how kind the typical child or family, the only reliable peers are from the world of disabilities too.” I’m not quite sure what to make of this. It doesn’t sit right with me, but I'm well aware of how complex the issue is.

That's why this piece today by a blogger with spina bifida in the Huff Po bothered me. She argues that if only parents would toughen up and send their kids into the real world, all would be well. "In an effort to protect their children, some parents will only seek out other disabled children for potential friendships," she writes.

I find her tone self-congratulatory ("My family always taught me how to do for myself") and blaming of kids who are more complex and need more support. "I had to make friends with the 'normal' kids because they were the only kids around," she writes.

The comments on my Huff Po piece tell me that many youth -- with and without disabilities -- are unable to 'make friends with the normal kids' despite best efforts. Struggling to find good friends seems to cross every line, and certainly the disability one.

I heard from some organizations that are promoting inclusion or access for people with disabilities. Game Accessibility from the Able Gamers Foundation advocates for accessibility in video games and has great resources. Unified Theatre brings together kids with and without disabilities to develop and perform plays. The concept is simple, reads its website: let teens lead, let creativity rule and treat people with disabilities as complete and entire equals. Together Including Every Student is a peer-matching program that brings students with developmental disabilities together with student volunteers to participate in community activities. Side by Side is a parent’s blog post about a boy’s successful inclusion in a regular school program.

There were parents of kids -- with and without disabilities -- high school and college students, disabled adults and a businessman who contacted me, wanting to know how they could make a difference. A counselor who also has hearing loss wants to adapt fairy tales to include our children – her first is about a princess who is deaf/hard of hearing. Given Ben’s tiny size, she thought he might be a candidate for inclusion in Jack and the Beanstalk! A breeder offered to donate a pup as a service dog.

The response to my Huff Po piece makes me hopeful.

Ben and I set up a Facebook page.

What are your thoughts?

Louise Kinross edits BLOOM, a magazine on parenting kids with disabilities by Holland Bloorview Kids Rehabilitation Hospital, Canada's largest children's rehab hospital.

Wednesday, February 22, 2012

Another day on the calendar

When you are a special needs parent days, and especially holidays, can blend into each other.  Often, I mark time by the stretch between events to endure or get through.  There are those times when you measure your time by the special days on a calendar that you prepare for (or hope to celebrate in some way).  Then there are the days that you struggle to get from one hour to the next.  However, my birthday seems to be one of those unfortunate days where the magic is lacking and the specialness of the day is that I made it through and have to mark another box on a demographics form. 

Last week saw my birthday and Valentine's Day come and go.  Pretty much just like that.  Days on a calendar.  Even my mom didn't send a card.  Oh, I was wished a "happy" day but the sentiment seemed as hollow as the day seemed forgetful.  My husband ordered a special cake and we ordered out since I really didn't feel like commemorating the anniversary of my existence with a trip to a restaurant where the kids can order from a picture menu.  That gets old after the millionth visit.  Yet, at the end of the was just another box to mark on the calendar.  Valentine's Day definitely lacked any romance or warm fuzzy feelings of love unless you count watching my youngest be completely overwhelmed by his class party as he sat watching everyone else with wide eyes.

Now don't get me wrong, I'm not expecting the world or even a parade.  But damn it...don't we deserve one day a year to feel special?  It's not like I even get Mother's Day.  Hallmark doesn't make a special line of greeting cards for us special parents.  And the syrupy hollow sentiments in the others can leave you upset that your corner of the world isn't perfect.  I keep saying "it is what it is"--but some days are just harder to swallow without a mega dose of artificial sweetener to coax the bitterness down. 

Ok, so I sound a little petty and shallow as I look back on this.  I'm not asking for a parade.  I realize in the grand scheme of things I am considered to be no one special by anyone.  I am not making a difference in the world or changing things for the better.  I haven't figured out how to cure anything or have created a new therapy that will make life easier for the next set of families who will follow in my shoes.  My day was just another in a long line of of endless days that flow into each other until they will stop and I won't have to worry about marking another box again.  Same old same old.

Except, shouldn't we have a moment--or gasp, a day-- to recharge and feel like we matter?  We are doing impossible things with very little accolades and acknowledgement.  We are raising special children who are special not just because the world sees them differently--but because they are important and have meaning for who they are.  We respect our children and demand that others do as well.  Yes, sometimes we have to do that while reciting regulations like bible verses and controlling urges to go "grizzly" on some less-than-cooperative individual (whoever that may be at the time).  Our mundane days are really quite special, quite impressive.  We are setting a stage for those who will come in our wake just as we have followed those who formerly blazed trails for their children. 

Doesn't that deserve recognition?  Doesn't that deserve a parade.  Hell, doesn't that merit something more than just a red "X" on the calendar at the end of the day?  Maybe next year.  I guess I'll go finish that last piece of ice cream cake and pretend it symbolizes more than just the fact that I'm another year older and another year closer to when my boys won't have me to keep track of the days in their calendars.  I hope by then, they have someone who will continue to make their birthdays as special as possible so they don't think they are just days on a calendar.


Tuesday, February 21, 2012

That Old Arbitrary Routine

Many, many years ago, when I was a wee slip of a girl (18? 19?), I worked in the infant room of large daycare center whose owner was quite adept at preventing reality from intruding on her worldview.

Hence, rules like this: all the babies have to move from the infant room to the toddler room during the week of their first birthday.

Also: no babies may move from the infant room to the toddler room until they are walking.

The fact that only about half of all babies are actually walking by their first birthdays? Why, those babies who don't walk are allowed to be lazy! Their parents carry them everywhere and they have no motivation to do the hard work of learning to walk!

See what I'm saying about reality?

My first run-in with this set of conflicting rules had to do with a baby who I'll call Jana. She was an adorable baby, with thick, dark hair and thighs like giant slabs of beef. Oh, she was a juicy chunk. But she crossed the magical 12-month mark and she was still crawling like the lazy little slug that my boss's worldview said she must be.

Liz (my boss) started hounding us constantly, "Teach that baby to walk!", so although I knew it was a ridiculous thing, I started holding that baby's hands and walking her all over the baby room until my back screamed at me to stop. Jana didn't mind a bit, but when I let go, she crawled away, which all but enraged Liz.

Not long after her birthday, Jana's parents asked Liz when she would move to the toddler room. They wanted her in the more stimulating environment with the other one year olds. In the baby room, there was only napping, eating, and the waving of rattles, whereas in the toddler room, there was napping, eating, and the smashing of crayons onto pieces of paper.

Liz told them that their deficient and lazy baby would not be allowed to move until she got up on her hind legs and walked there herself, at which point Jana's parents joined in on the relentless harassment. "Walk, baby, walk over here and give me a kiss!", they begged. We tempted Jana with cookies and shiny toys. Her parents bought some kind of harness that Jana wore while an adult held the straps. Our backs breathed a sigh of relief, but Jana did not walk.

After watching Jana's dad carry her out to the car one evening, Liz stormed into the baby room and said, "Fine. If those parents want their baby to crawl away to kindergarten, I don't care anymore. We'll move her to the toddler room tomorrow and if she gets stomped by the other kids, there's nothing I can do about it."

We moved her the next morning, her shame-faced parents hanging onto Jana's hands as they walked her across the center as if they had failed some fundamental parenting task. Two months later, long before she was eligible for kindergarten, Jana, via the magic of brain wiring, muscle development, and the alignment of the stars, stood up and walked. She had not been stomped by the other 1 year olds, most of whom were too small and too wobbly on their feet to be any kind of danger to anyone.

Jana has maintained an outsize prominence in my memory circuits all these years, both because the whole situation made me so angry I saw dancing red spots behind my eyes whenever I thought of it, and because Carter has been up against similar arbitrary standards all his life.

When Carter was still in public school, I used to be afraid I would stand up and scream during his IEP meetings, "If any of you compares his abilities to this "grade level" bullshit one more time I will start slapping people!"

Oh, of course I know it's what the system requires, and most of the individuals who worked directly with Carter were concerned much more with his progress than they were with numbers on forms, but still, those numbers (and the few people who insisted on paying more attention to those numbers than the little boy in front of them) were a torment to me.

I remember one of our very last IEPs, during the spring of Carter's first grade year. He had done kindergarten twice, so it was his third year at that school. The lead special education teacher (who didn't actually work with Carter but had started showing up at all our meetings after my husband and I made several calls to the district office to complain about IEP noncompliance on the school's part) started reviewing the numbers: Carter should be at 1.8 (first grade, eighth month) or ahead, since he repeated a year, she said. He's at K.4 in math, K.2 in reading, and his writing abilities are what we would expect from a child who hasn't even begun school.

Was it my imagination that there was a bit of a tone? A little hint of Liz's old blame-the-parents routine? I could feel it under the words: he's absent too often (never mind the six doctors' letters I'd offered as proof of the many reasons Carter missed school), you don't push him hard enough, you don't drill him at home. Maybe it was my imagination, but certainly there was no love lost between us.

This practice we have of comparing children to arbitrary standards is of some use in identifying children who need help, but I've never perceived it as anything but a stick with which parents and children may be smacked. Compounding my distress during those IEP meetings was the fact that, at that time, my life revolved around Carter: getting him appropriate medical and psychological help, guiding him through explosive meltdowns, nursing him through frequent episodes of cyclical vomiting syndrome, studying special education law, on and on and on. I had begun to accept that Carter's many limitations extended into his academic life, but I was nowhere near healed enough from the painful process of gaining that acceptance to deal with having it flung around the room in an insensitive manner.

To be looked at sideways by that woman was really more than I could bear.

So I spoke up in that IEP meeting and said, "I know he's behind grade level. I don't want to talk about that anymore. How is he doing? Is he making any progress?"

His special education teacher (the one who was actually with him more than half of every day) jumped in then, telling me all that he had learned, and while most of it was indeed preschool and kindergarten material, he was learning! He was making progress, albeit slow. I never would have known that he wasn't sitting at a table and drooling all day if I'd not asked my questions and we'd remained focused on how he compared to grade level expectations.

All I want is for Carter to be challenged in appropriate ways. Is he learning and making progress (no matter the pace)? Is he happy at school? Is he curious and eager to learn new things?

If the answers to those questions are yes, I don't care one bit how he measures against a list of things kids should know at any particular age. I don't know where he's going, but I'm convinced he won't get there faster if we hit him (and me!) over the head along the way.

Adrienne Jones lives and blogs in Albuquerque, NM. You can find her at No Points for Style.

Sunday, February 19, 2012

Walking The Tightrope

It's always something, isn't it?

The last three months have been kind of crazy around here.  Since November, Connor has had strep throat, RSV, double pink eye, a yeast infection around his g-tube, three GI bugs, impetigo caused by strep and staph and had nasty allergic reactions to sulfa drugs and to surgical tape.  Last month I didn't blog because of the freak snow and ice storm we had here in the Pacific Northwest that knocked out our power and Internet access for a while.  Now we're monitoring Connor's kidney, which is starting to show evidence of some wear and tear.  The nephrologist thinks it might be due to one of the little guy's seizure meds, which of course is the one that stopped him from having seizures that require me to do mouth-to-mouth on him.

It's always something, isn't it?

Here's the deal.  Even though the past three months have been rough even by our standards, I figure that it's always going to be something.  Managing the care of a child like Connor is like juggling while trying walk a tight rope strung between two buildings-- everything I do affects everything else, and I have to constantly readjust to find the best combination of therapies, medication, interventions and rest to keep Connor moving forward without tipping him over one side or the other. 

So yeah, always something.  How much I have in reserve to handle the issues and keep things going the way they need to go ends up being the main issue I'm struggling with right now.

I have to do my very best to find my own balance-- to recognize when I need to add some rest, time with close friends, or maybe a bit of pampering so that I can continue to do what I need to on a daily basis.  And after the past three months, I absolutely need all three of those things right now.  I'm starting to lose my patience more easily and I'm getting snappy with Jer-- warning signs that I need to take some time for myself or I'm going to start dropping balls not just with Connor, but with other aspects of my life as well.  It's a lot harder for me to keep the house running well or to make all those phone calls to the insurance company when all I have the energy to do is sit in a chair and stare at the wall for a while.

It took me a while to figure out those signs when I first started parenting the little guy, but I've learned the hard way to listen to myself and to stop feeling guilty about taking some me time every once in a while.

So I'll take a step back, let our respite care worker juggle the load for a day or so, and spend some time finding my feet again.  Then I can return to giving Connor the attention he needs and deserves.



Jess blogs daily over at Connor's Song.


It started out as a romance.  A pretty cliched love story, actually: boy meets girl, boy sweeps girl off her feet and whisks her off to distant lands.  Before they knew it, a baby girl came along and the script had morphed into a screwball comedy.  This was hackneyed fish-out-of-water stuff.  Adding a baby boy moved the family straight into a farce.  

Then there was a twist: a diagnosis- this was special needs parenthood.  A showstopper.  It couldn't be a comedy any more, could it?  Surely the next scenes had to be gritty.  A kitchen sink drama.  Moody stuff, filmed only in black and white.

Maybe, for a little while.  But what if that was just one scene?  What if the story continues in glorious technicolor, with joy and laughter, and plot developments we never saw coming?  Perhaps as the camera keeps rolling it can return to comedy, or romance, or even an action adventure.

Last week, we drove an hour away from our home in Johannesburg to a wildlife reserve.  We fed a family of elephants.  The kids reserved at first, then curious, then brave, then gleeful.  Picture a baby elephant raising its trunk, and Pudding reaching out her own arm in wonder, then tentatively stroking.  It was a sensory experience like no other.  After a few moments of silent greeting, Pudding raced off to place carrots between the "lips".  

My girl who struggles with social interactions with her own species was instinctively communicating with another.  Then the elephant- scene-stealer that she was- sneezed on Spectrummy Daddy.  You didn't need canned laughter for that piece of improv!

There are some things you can't capture on film, but these are the very scenes you will never forget.  The diagnosis wasn't the end of our story; it wasn't even the beginning.  There'll be more tear-jerking moments, suspense, and side-splittingly funny times.  Forget what they say about never working with animals or children: the show must go on!

Spectrummy Mummy is supposed to be in charge of production of her blog, on Facebook and Twitter, but spends most of her time being directed around by Pudding (5) and Cubby (2).

Saturday, February 18, 2012

The Other One

One might think I only have the one child, Rojo, my child with special needs. One might be wrong. Although he is the one I primarily write about, the one I give 90% of my time and attention to, the one whose sleep/eating/school/life schedule dictates mine, he is not the only one.

The other one is my daughter, a soon to be 18-year-old, graduating senior. The other one has one foot in high school and the other in college, one foot in childhood, one in adulthood, one foot in our home and one foot out.

Although the minute Rojo was born (or actually from the minute I became pregnant with him), her life changed forever, she will miss him. He is her normal. He’s the only sibling she’s had, the only way she’s known life to be really, he, and all his issues, is the way we roll.

Perhaps the thing I’m most excited about for the other one as she begins college in the fall; is that her life will be her life. 100%. In college she won’t be the other one. She’ll be THE one. And I hope that chapter in her life good and long, that magically time of life when it really is, and should be, about her, her, and only her.

Friday, February 17, 2012

Because of Katie

You may remember one of our writers Karen Gerstenberger and her posts about grieving and finding hope through the passing of her daughter Katie.

In the autumn of 2006, the Gerstenberger family's life changed forever with Katie's cancer diagnosis. Karen has written a book, Because of Katie, that shares their journey with her - through treatment, surgery, recovery, remission and beyond." I encourage all of you to check it out.

Paula D'Arcy, author of "Gift of the Red Bird" and "When People Grieve," calls her book "a beautiful, forceful story...the beauty of Katie, the mother's heart, the family's love, and the importance for the medical community to meet these harrowing moments of life and crisis with great awareness and care...Your words will be of such benefit to those who walk this path, and also those supporting them."

You may find Karen's book on and at

Karen also writes a blog at and is President of Katie's Comforters Guild at Seattle Children's Hospital.

Thursday, February 16, 2012


To Do Today

  • Put her out there
  • Keep her close
  • Orchestrate situations in which she can succeed
  • Sit back, hands off, see what she can do
  • Make annual appointments with multiple specialists per diagnosis guidelines
  • Let her be until and unless she appears to need medical attention
  • Schmooze the professionals and experts in her life
  • Screw the professionals, I am the expert
  • Advocate to affect systems change
  • Don’t rely on systems
  • Contact insurance about coverage for a new communication device
  • Research alternate funding as insurance is unlikely to cover a new device
  • Seek work for pay
  • Continue to work for other compelling reasons and no pay
  • Worry
  • Don’t worry
  • Trust others with her
  • Investigate,monitor, and record the actions of others in her life
  • Remember she is ‘special’ because she is different
  • Remember that she is just a regular kid
  • Respond to insensitive comments with a grace aimed at educating
  • Fling a zinger back when stupid things are said and done
  • Promote inclusive attitudes by taking risks and assuming inclusion
  • Don’t expect acknowledgement of any kind
  • Search for strategies to mitigate her challenges
  • Accept her as she is
  • Celebrate
  • Grieve
  • Participate in typical family life
  • Redefine my own family life
  • Let people in
  • Guard  privacy
  • Say yes
  • Say no
  • See what others have done, don’t reinvent the wheel
  • Pave a new path, do it my own way
  • Get involved in everything
  • Take time for myself
  • Ask for help
  • Don’t depend on others
  • Try to work my family into the typical flow of my community
  • Sign on to exclusive disability-related opportunities with those who “get it”
  • Campaign to change words referencing those with intellectual differences
  • Don’t let words get to me
  • Change everything
  • Change nothing
  • Push
  • Pull
  • Act
  • Wait
  • Do
  • Don't

To Do Tomorrow

  • Put her out there
  • Keep her close
  • Orchestrate situations in which she can succeed
  • Sit back,

                                hands off,






Tuesday, February 14, 2012

I Wish You Love

Whitney Houston has died, and though I was never a particular fan of her music, I can't help but be touched by her struggles, and by the loss of one of the iconic singers of my youth.

In reading about her death, I came across these lyrics from "I Will Always Love You."
I hope life treats you kind
And I hope you have all you’ve dreamed of
And I wish to you, joy and happiness
But above all this, I wish you love

This song is about ending a relationship, but no truer lyrics have been said about how I feel about my children, especially Moe, who may not be able to demand these things for himself.

I want Moe to have all the respect and success and progress he deserves. But most of all, I hope that he is loved and happy, and although life may not always treat him kindly, I hope at least that people will. 

It doesn't seem too much to ask.

Monday, February 13, 2012

Better Than Chocolate

It's almost Valentine’s Day and we will be bombarded with movies, TV specials and a landslide of things to buy to show our ‘love’.  The flowers sellers and candy manufacturers  are working around the clock. The LA Times reports that jewelry sales rose 7.7% last year, recovering somewhat from the previous year’s recession so bling is back. 

Don’t get me wrong; jewelry is great. I’m a fan!!! I also think that flowers and candy, especially chocolate, brighten the day, but let’s think for a moment about how to create a lasting sense of well-being (hmmmm, jewelry does last and candy lasts on my hips). Seriously, there are ways to increase the general level of happiness and satisfaction with our lives.

Be Grateful

"Grateful people report higher levels of positive emotions, life satisfaction, vitality, optimism and lower levels of depression and stress. The disposition toward gratitude appears to enhance pleasant feeling states more than it diminishes unpleasant emotions. Grateful people do not deny or ignore the negative aspects of life." - Robert A. Emmons and Michael E. McCullough

Being grateful does not ignore trouble or true suffering. However, it does remind us of all the important, good things and people in our life and that increases feeling good.

Appreciate Having Choices

From Dr. Linda Edelstein -> Researchers in New Zealand performed a meta-analysis of 638 research studies that asked 420,599 men and women (mean age =37) from 63 different countries about their Health, Wealth and Happiness. They found that a strong sense of well-being could be predicted if a person scored high on individualism, personal freedom and autonomy.  Money was found to be useful for buying things and making life comfortable because it gave people choices but, the drive to “DO AS I CHOOSE”, meaning high individualism, personal freedom and autonomy was more important in determining overall well-being.

So, well-being seems to increase as we have the ability to make choices in our lives; it makes sense. Can there be too much of a good thing?  Yes, too much individualism separates families and causes anxiety which is not conducive to well being.

Source: Fischer, R. and Boer, D. What is Important for National Well-Being? Money or Autonomy? Journal of Personality and Social Psychology Vol. 101 #1, p 164-184, 2011.

How To increase Happiness

Choose friends who are joyous people.  See them frequently and you will find your spirits rise. The older I get,  the more I make it a priority  to spend my time with people who give me joy. If you have any constantly unhappy people in your life, limit the amount of time you spend with them. Try it; you'll perk up !

People with strong, extensive, happy social connections tend to be the happiest people, probably because they are reminded that we are all in this together. The sense of belonging is important, as is that reminder that we are one little piece of humanity.

"A real friend is one who walks in when the rest of the world walks out." Walter Winchell

So, for this Valentine’s Day, I hope that you are enveloped by good friends, cheerful people, grateful remembrances, and the freedom to choose.  And, let’s get real - some milk chocolate, a dozen roses and a little something from Tiffany.

"Love doesn't make the world go round, love is what makes the ride worthwhile."  Elizabeth Barrett Browning

High School Confidential

My son has been coming home from high school lately complaining of a stomach ache. He's done poorly on a couple of tests and blamed it on the pain. He's been reluctant to engage in activities he usually enjoys.

This sort of "school flu" is not unprecedented, and usually means that some part of his special-education program isn't working for him -- problems with a para, a bad mix of classmates, work that's confusing, help that's not helping. This is the sort of thing I suit up for, you know? But in this case, it appears, it's not school sickness but lovesickness. My boy's got girl problems.

And on one level, I'm all, "Yay! Normal teenage guy stuff!"

Quickly followed by, "Damn. Normal teenage guy stuff."

It's easy to attribute his cluelessness in matters of the heart to the fact that his emotional development is not exactly up to high-school speed, but really -- there are plenty of absolutely A-1 on-target eighteen-year-olds who don't quite get that it's not OK to let one girl think you're her boyfriend and then crush on her best friend. This stuff is hard for everyone, as witnessed by about 90 percent of popular music. And it's a challenge for every mom of a son to teach him how to be a man of honor, even if it makes his stomach hurt.

We're running the gauntlet now, my son and I, from the last IEP meeting (YAY!) to the end of the school year and graduation. The end of a sixteen-year journey through the special-education system is in sight, so close, but there are unexpected hurdles. Harder work here at mid-year. Professionals who think supports should be faded, even though his particular diagnosis argues strongly for keeping them up. A high-school community on alert for violence and bullying, and wielding Zero Tolerance like a blunt instrument. The possibility of absence seizures making focusing even harder. And of course, as I now discover, the hearts of teenage girls strewn about, ready to trip him up.

As for my heart, it's in my throat. Just get him through these last few months of school, Lord. Just get him through safely. Just get him through without hurting anybody, or getting involved in the kind of disputes over girls you read in tragic stories in the newspaper. Just get him through with decent grades, with a feeling of success, with a little self-confidence left over. I'm counting the days.


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.

Sunday, February 12, 2012

The Suction Machine is Back

I woke up ready to write a pithy post for Hopeful Parents, until I looked at the calendar and realized I was a day late!  Can I just second Varda's post for February 11th?  The suction machine came back out yesterday after a two week hiatus, and we're feeling sad and seriously fatigued with the necessary caretaking that our 6 year old is requiring.  This is, hands down, the worst winter of our kiddo's life in terms of health struggles.   My girl is wheezing and coughing, and we went to bed last night waiting to see if another visit to the ER was going to be in order.  On the upside, we had a final celebration for the installation of her new tub thanks to Make-A-Wish Vermont!  Sylvie got some frosting, now if only she could eat her cake too!  


When Kirsten isn’t catching up on sleep or working as a professor of Communication Studies at the State University of New York, she spends time suctioning mucus. 



Saturday, February 11, 2012

Burnout Factor

This is now my 19th post for Hopeful Parents. And while I started in August, 2010 with such enthusiasm and hurrah, I have to say I know I have been running out of steam lately. Two of my last few posts are re-posts from my main blog, The Squashed Bologna. I scramble every 10th to make SOMETHING happen here. I feel bad, but I also know I can only do what I can do.  

I have also noticed that I am not alone, that this site is… less robust than it used to be. Back when I started there was ALWAYS a fresh post every day, and often there were two (as two are scheduled per day). Now it seems to be a mostly every other day sort of thing, and I have spotted three and four day gaps with… nothing. Nothing new. I also get one or two comments where once I had gotten six to ten. (Yeah I notice that stuff, tell me you don't.)

I know that some of my blogging friends who I used to find here have withdrawn, some with announcements that they needed to pull back on their outside commitments, focus on family. Others just seem to have petered out and disappeared. Yet, as far as I know, no new bloggers have come on to replace them. 

I hope that it’s been noticed by the HP powers that be and that plans are afoot to reinvigorate this site. I really love being part of a community like this that is larger than just myself. I like having a place to contribute where other wonderful special needs parents also congregate.

I am hoping that for me this is just my “sophomore slump” (being in my 2nd year of this commitment) and I will have a lot to say again here soon. But if the site itself is fading away, that will be hard to rally myself for. (So let's try not to let that happen, OK?)

Life with my family is not particularly more difficult now, it is just… rolling along at the same old low-grade stress level as usual, that is also somehow never completely relieved. So there is a cumulative fatigue factor, a worn-out quality to everything in my life. Especially me.  

There are, in fact, some wonderful new developments with Jake, as he is reaching out socially more than ever, greeting and starting (not completely inappropriate) conversations with nearly everyone he meets.

And while most people are not used to being approached by an overly friendly, outsize (size 14 clothes, 100+ pounds), puppy-like, bouncing-on-the-balls-of-his-feet 9 year old with a: “Hi! My name is Jacob! You have a hat on! It’s a blue hat! I have an orange hood! What shape are your ears?” They usually gamely play along.

So I’m not really complaining.

I’m just… tired.

Really. really. really. really. tired.  (I’m sure no one else here can relate.)

Comes with the territory, I suppose.

It’s why, for the 2nd month in a row, this post is officially going up on the 11th, even though my “day” is the 10th. Because I walked away from the computer for a few minutes while in the middle of writing it, switched on the TV for a brain-break and promptly fell asleep sitting up. Woke up slumped on the sofa two or so hours later and shuffled back here to finish.

And since I didn’t don my PJs and tuck myself into bed yet, in my mind its still Friday the 10th, even if the clock says otherwise.

So all this said, I am planning to be back again next month. Hopefully on the ACTUAL 10th next time (but no guarantees). And hopefully in good company. Because I love being here, really I do.


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.

Wednesday, February 8, 2012






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"Trans" is a prefix we are using a lot around out home right now because we are in the process of transitioning a little girl into our family and that means there is a lot of transformation going on. We are going from a family of all male children to a family of girls and boys and that means a shift in all sorts of things in terms of both stuff we posses and habits we have. Less of a change for me, the lone female, and more of a change for everyone else. 

We are excited, we are working toward having her here fulltime in mid March. She has her own alphabet soup of issues just like our boys do but at the end of the day, she needs a family who is going to stick with her regardless. We are nothing if not commited and although she is going to keep us busy we are very committed to making sure that this little girl makes a successful transition into our family. A family where the testosterone has over powered the estrogen for a long time and although I love having sons with the rough and tumble world they drag me into, but I am looking very forward to having a dollhouse in my home and perhaps painting nails kids again ( the boys will not let me paint their nails anymore)

J. writes here once a month, although she disappeared for a few months ( life gets in the way of blogging sometimes) but she is hoping to remember that this is where she is to post on the 8th. She also writes at least weekly at her blog Stellar Parenting 101 where she talks about the journey of domestic older child adoption from foster care. 

Monday, February 6, 2012

I'm on Fear Factor...

I wondered about the consequences of bringing it back. Now I think I understand.

No, I didn’t have to drink anything ooky that came from the nether regions of a donkey. However, what has gone on this week has filled me with the same foreboding that I imagine the contestants on that show feel.

Last week, we had the ‘mental collapse’ brought on by blood tests. This week, it was a whole new box and dice (box of dice?)

On Sunday morning at 6:14am, Billy was sleeping beside me (have I ever talked about the co-sleeping, bedtime tango?). At 6:15am, I heard a really odd grunting sound. I thought it might be the dog dreaming, but it wasn’t.

It was Billy. His whole body was tense. He was jerking all over and the grunts matched the jerks in tempo and intensity. His eyes were fixed to some spot somewhere between himself and the North Pole.

He looked exactly like one of those cartoons where someone has been plugged into an electrical socket. But a little more gentle and without the spiky lines around him for emphasis.

I called out for Billy’s Dad to come in from Billy’s room, and through the jerks, Billy was able to say, ‘I… don’t… think… he… can… hear… you…’

I fumbled for my phone, to try and video what was going on, but of course, it was one of those iPhone moments when the camera takes forever to open. By the time it opened, Billy was still.

He tried to move, but he couldn’t. He tried to talk but the words came out all jumbled. He slumped back onto his pillow and fell into a deep sleep.

He barely moved for the next 3 hours.

A seizure.

So that’s what they look like.

The rest of Sunday was spent in the Emergency Room, among kids with mysterious joint infections, inflamed appendixes (appendices?) and heavy dependence on vomit bags.

Billy was chirpy as a lorikeet, if a little tired. They checked his neuro signs, they checked his blood levels and sent us home. We were given instructions on how to book an EEG and how to handle future seizures.

We have officially entered ‘the early days’, from what we understand. Every doctor, nurse and receptionist is clearly used to dealing with the anxieties of parents with seizing kids. They all use the phrase – ‘The Early Days’. It sounds vaguely colonial, or primary coloured, almost charming.

We watch, we wonder and we wait. Actually, we wait quite a bit. For EEGs, for appointments with neurologists, for more seizures or no more seizures or something that resembles a pattern that may form a part of our future.

And that’s why I feel a bit like a contestant on Fear Factor.

It’s not so much that I am actually worried about what might actually happen, though I clearly am, but that I am almost certain there’s something even more disgustingly confronting around the corner.

I did not expect this one. I did not want this one. I am one step further away from the chance to flick my stylishly cut hair around and bitch about how Billy doesn’t get enough game time in soccer. And I’m not thrilled about it.

I know it could be worse. I know he is fine right now. I know, I know… but really. Enough.

I feel like the producers of my life have decided I just might be the contestant that can take the cockroaches on the face, or the poo sandwich.

If anyone has their number, could you please tell them I actually can’t? I’m not up for it.  I’m quite happy to be the one who flies under the radar and ends up semi-sweatily hanging on the coattails of some real competitor.

I am afraid.

Of pretty much everything.

I’m afraid that my child who struggled so with vaccines in the first year of his life is carrying a real burden. I’m afraid that my child who got hit with a gigantic auto-immune hammer in his 4th year on earth is struggling more than we know. I’m afraid that the odd drug reactions and the twitching after living next to a pool full of Roundup are signs that worse is to come.

I am also afraid of kittens and puppies and lollipops. Why not? Stranger things have happened. My perfectly beautiful child is being assaulted by the world around him and no-one outside of the special needs community seems even vaguely concerned about it.

‘No’, they say, ‘There’s no evidence of that drug reaction’. Really…? Here’s evidence. His name is Billy.

‘We’ve never seen a child have seizures after coming in contact with that substance’, they say. Really…? Here’s one. His name is Billy.

‘We don’t believe there’s a link between those vaccines and any neurological changes’, they insist. Really…? Because we don’t want to believe it, but we live with it. Actually, he does. His name is Billy.

I don’t like being afraid. I do not need any more practice at being afraid. I am naturally quite good at it.

I’m sure we can suck up the idea of seizures and move forward. We did it with autism. We did it with Transverse Myelitis. But I’m also definitely sure that we don’t want to.

Just like I have no interest in eating equine testicles.

Enough already. Roll credits and move on to an episode of Parenthood. Those usually end well, right?


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

Saturday, February 4, 2012

How to cope with the things people say ?

One of the hardest things for mums and dads of auties is  what I call  the “coming out”.

Of disclosing to the world that your child has autism

THow do you reply one day to the he breezy question of “Hows the little one”?

You have always replied “doing great”

Do you one day, just state baldly “ well actually he has autism now !”

When we first found out, I told just my very close friends ( those with who had discussed with me the all consuming  “does he/doesn’t he” of the months before getting an official diagnosis of he-does) .

 I told them by email and I told them that I did not want to talk about it at all.

The talking could come later.

Many people said kind things "Must be hard.... is there anything I can do?"

But the words of other people ( even when, well meaning  ) hurt so deeply 

"Did you see that Larry king show" ( where the mother was taking about killing herself?) 

Will you be taking him to Vegas to play the slots? ( yup mother-to-rainman, every woman's dream) 

"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know ) 

"I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )

Just curious.. if you could do it again what would you do different …You must really regret vaccinating your child( ouch !!)

Do you think its because you were so stressed when you were pregnant?” ( always a comfort to know that it was my fault ) 

“These are chosen children of God!” or –“this is just a penitence for past sin” or “god has only given this to you because you are strong”( wasn’t feeling so lucky to be chosen )

And the worst "Soon they will be able to screen for autism in utero and we can prevent autism "

How it hurt!

But, the truth is that most people were  just looking for something to say.

Often ,in fact,  they  were trying to read my attitude to see what would be  right thing to say. 

Should they should sympathize or offer something uplifting?

Sometimes, of course,  they were not thinking at all

But, almost never, was anyone looking to hurt

The intent was usually kind

All my life, I have been deeply in love with words.

So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and threatened  to turn the light switch off !

But being loved so deeply by R - my child, silent for so many years- taught me to look beyond words 

He taught me to look to the intention behind the words.

And it makes all the difference to how I feel about what is actually said

The second thing that has really helped, has been falling back in love with life and realizing our child is the best child in the universe to us.

So I can  truthfully answer" he's great". A cue to starting the kinds positive conversations 

The third thing that has made a difference has been to teach myself to be a little less sensitive 

The other day an elderly aunt commenting on R’s talking asks” will he always talk like this or will he improve any more”

My mum, on hearing this quickly comforts me “oh she is a broken drum ( Bengali proverb) no one knows what sound will come out of her next.. let it roll off your back “

And I can !

I , Floortime lite mama blog about my adorable son, my life and joy at Come see me there 


Friday, February 3, 2012

Everyone Has Something

Coming home from karate the other day, my typically developing triplet pointed out to me that his brother sometimes needs help walking. “Yes”, I told him. “He does.” He went on to tell me that he doesn’t need help walking, and that he wondered why his brother does. This has never come up before, but now that they are four, they see and question more than they ever have. So I told him. “Your brother has Cerebral Palsy. That means his body doesn’t do what he wants it to do the same way yours does.” I could see him thinking about this, and as he stumbled over the pronunciation of what I just said. “So he needs help walking, right Mom?” I smiled to myself. Simple explanations are so much easier for young children.

Then he went on to tell me his sister doesn’t need help walking, and she doesn’t have ‘spec-cere-ball’ (pause) pal-zee’. “Actually baby, she does too.” His eyes got huge as he tried to comprehend that one walks, one doesn’t, but they both have something. He frowned, trying to reconcile this in his mind. “But she walks Mommy.” “Yes, she does”, I told him. “She needs help with different things than your brother does.” I told him everyone has something they need help with. Some things you can see, some things you cannot. But all people, everyone, has something they need help with. He was quiet for a few minutes, looking out his window, then turned back toward me. “What do I have Mommy?” And I said, “You have compassion, and a brother and sister who have a lot to teach us.”

Everyone Has Something

Coming home from karate the other day, my typically developing triplet pointed out to me that his brother sometimes needs help walking. “Yes”, I told him. “He does.” He went on to tell me that he doesn’t need help walking, and that he wondered why his brother does. This has never come up before, but now that they are four, they see and question more than they ever have. So I told him. “Your brother has Cerebral Palsy. That means his body doesn’t do what he wants it to do the same way yours does.” I could see him thinking about this, and as he stumbled over the pronunciation of what I just said. “So he needs help walking, right Mom?” I smiled to myself. Simple explanations are so much easier for young children.

Then he went on to tell me his sister doesn’t need help walking, and she doesn’t have ‘spec-cere-ball’ (pause) pal-zee’. “Actually baby, she does too.” His eyes got huge as he tried to comprehend that one walks, one doesn’t, but they both have something. He frowned, trying to reconcile this in his mind. “But she walks Mommy.” “Yes, she does”, I told him. “She needs help with different things than your brother does.” I told him everyone has something they need help with. Some things you can see, some things you cannot. But all people, everyone, has something they need help with. He was quiet for a few minutes, looking out his window, then turned back toward me. “What do I have Mommy?” And I said, “You have compassion, and a brother and sister who have a lot to teach us.” 

Wednesday, February 1, 2012

The Squeaky Wheel

I’ve heard from many families about unequal healthcare.  A friend in another state who had a terminal illness and diagnosis was delayed due to the type of insurance she had.  Another who was told of a possible terminal illness but sent home from the hospital the same day due to lack of insurance.  Someone was inadvertently taken to a drug rehab rather than nursing home rehab facility.  A child denied dental care due to her disability.  Still another child denied therapy because as the insurance rep. told the mom on the phone “he was going to die anyway!” 


They call it “health disparities”.  Worse outcomes due to inequities in care that can result in increased morbidity (illness) and mortality (yes even dying).   Sometimes it’s due to the type of insurance.  Sometimes it’s based on race, sex, gender identity, age, disability, or economic status.  Discrimination.


Healthcare reform will hopefully address some of the inequality.  In the meantime, it’s up to parents to speak up for their children to make sure they get the care they need.  I’ve seen posts on blogs, petitions, and social networking.  Although it may raise some awareness and could help to vent, it’s frustrating to see all the wasted energy but no action.  Support groups are great for empathy, but parents also need to advocate (“to speak for another”) for their children to make things change.  In doing so maybe policies change so separate families don’t have to keep fighting for the same issues.  And also teach their children “self advocacy” for themselves eventually.


I’m sure you’ve heard the metaphor “the squeaky wheel gets the grease” (if you haven’t, it basically means to make noise to get attention.)


Although this unfairness increases emotions, families may need to take a break and try to deal in the facts.  Is it really discrimination or are there no good choices?  Will this treatment help or just grasping at any hope?  It’s so hard when parents are desperate for anything to help at any cost. 


However, there are protections in place and organizations that help.  In each state there are Family-to-Family Health Information Centers and/or Family Voices where parents provide free help on healthcare issues to other families.   If families feel their rights have been violated, they can call the Office of Civil Rights.  For people with disabilities, families can contact Protection and Advocacy.   Remember when it’s needed to be the “squeaky wheel” so that your child gets the best care. 


Remain hopeful,




Family-to-Family Health Information Centers/Family Voices


Office of Civil Rights


Protection & Advocacy


Ian's Birthday, Whales and the Way Back Home

IMG_0678In the quiet stillness of the morning, you decided it was time to transition from the warmth of my womb to the world of wonder awaiting your arrival.  As dawn broke, the sun rose over the hills spreading orange hues that lit up the violet sky and turned down the stars.  Fifteen hours later, after the sun traversed the sky blazing the trail for the moon, your father and I held you in our arms.

You joined us on the eve of February 1st 2002.

We greeted you with great expectations.  We celebrated your arrival surrounded by your aunties and grandparents.  Feelings of joy mixed with exhaustion flooded my senses as I watched your father gaze down upon you.

That evening, in the quiet of the hospital, after everyone had gone home, your father slept in the bed while I rocked you in my arms.  I whispered stories of love in your tiny little ears of what I believed our life would be together.  In that moment, I had no idea how powerful a teacher you would be in my life.

Early on, I knew you were a very special child.  The neurologist diagnosed you with autism at 2 ½ years.  I sat in his office feeling as though the air had been sucked out of the room.  And there you stood, watching the birds fly, banging your hands on the window just as you did moments before, completely unaffected by the label.

Nothing changed and everything changed.

I swam in the depths of sadness and grief for quite some time.  At times I felt like I was drowning, pinned down by the force of crashing waves, over and over again.  I fought the waves, struggled to breathe, so full of fear.
You waited for me, standing on the sand, gazing up at the stars, birds flying above, watching the whales and dolphins play; your faith in me never waivered.

You patiently guided me to find my way back home to love.

A beautiful, pure love swirls around you and engulfs anyone that comes within your realm of being.  You touch lives with the simplest of interactions.  At the grocery story, the park, Costco and walking down the street.  Anyone who takes the time to connect with you experiences the joy of wordlessness and is forever changed by your love and sensitivity.  You teach each person what it means to truly connect from a place of love and peace.

I believe you showed up in this world as a profound teacher. Oh how the lessons have come fast and furiously.  Feels like a space shuttle burning up through the atmosphere, thoughts surfacing and burning up with a greater awareness.

You’ve taught me love blows fear to pieces.

I’m deeply grateful you chose me as your mother and continue to teach me to listen and lead from the place of peace and clarity.  I support your journey every day with love and renewed hope for a day when autism will no longer be a painful struggle for so many.

Whenever I feel a bit stressed or out of sorts, all I need to do is take a few deep breaths, get present and share a moment with you.  You show me the way back to love.

Happy Birthday dear sweet Ian.



As a Mind-Body and Leadership Coach, Diane Hunter guides clients from a state of pain and overwhelm to a place of calm and deep connection to love and joy. She offers a unique experience with horses where individuals step into their leadership and learn to build trust and gain a deeper understanding of the power of non-verbal communication. She writes on her blog On most days you’ll find her hanging with her greatest teachers; her children, and her husband in their home in Los Gatos, CA.