Category Archives: Therapists and Specialists and Evaluations, Oh My!

Reports from the medical, therapeutic, and school front.

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

Poof!: Losing an Autism Diagnosis

Guest post by Jessica Severson.

When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.

I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.

So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.

Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.

After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.

It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.

We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.

My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.

Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?

And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?

I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?

I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.

Jessica Severson

Jessica Severson is owner/writer at Don’t Mind the Mess.  Jessica’s bio is interesting enough.  I’ll let her speak for herself.  😉  


Dear Superintendent of Schools

Mrs. __________’s Note Home








To:  The Superintendent of Schools
Subject:  Mrs. __________’s Note Home
CC:   Mrs. _____________, the School Principal, the Director of ESE, school district administration, all School Board Members
BCC:  Flappiness Is, Facebook, Twitter, the Internet

Dear Superintendent:

Congratulations on your recent election to the office of Superintendent of Schools for our county.

I know that you have been in office just a few days.  And I am positive that right now everyone wants something from you, questions answered, or to elicit your support for their personal concerns.  I am happy to say that I do not need for you to do anything for me.  Well, not at this time anyway.

What I would like to do is draw your attention to one of the 9000 employees of your district.  Her name is Mrs. _____________, and she teaches at ________________ Elementary.   Mrs. ___________ is my son Callum’s teacher. Continue reading at Childswork/Childsplay Blog…



Disorder in the Court: Why I Don’t Champion Causes

Note: This blog post is not intended to question the veracity of any specific stories of injustice toward specific autistic individuals.  Nor am I disparaging any bloggers for the causes they choose to champion.  This is simply an issue in general that I have been concerned about for some time.

A man goes to his spiritual advisor to confess his sin of spreading false rumors.  He feels terrible about it and wants to know what he can do to stop feeling so guilty.  He is told to gather a huge bag of feathers and to place one feather on the doorstop of each person with whom he shared the false rumor and to return a week later for further guidance.  The relieved man races out to do so and returns in a week.  He happily reports that he did as asked and inquires what more he must do to make amends.  He is then told to go back to each house and pick up the feather.  Alarmed, he protests that it will impossible to get them all back.  The spiritual advisor sadly agrees.  

From time to time, I get requests from well-meaning souls to share provocative stories with my readers, either here, on Facebook, or Twitter.  I received two yesterday.  I was asked to share a story about a person with autism who had been unfairly treated –along with a petition to demand “justice” for that individual.  The story, as presented, did indeed sound awful.  The parents were reported to be outraged and desperate.  And there are lots of demands being made for a specific course of action toward those allegedly responsible.

But I’m not going to share the story.

It’s not because I don’t care.  It’s not because I can’t imagine myself in their shoes.  Of course, I think that the needs of the defenseless must be the first consideration when accusations are made.  And it isn’t that I think the stories are false necessarily.  But I think that we, in our community, tend to react with outrage before we sort out the facts.  The problem is that, every now and then, it might just destroy the life of a truly innocent person.

I doubt I’m the first person to declare such, but it needs be said.

There are lots of crazy, unreasonable, and simply mistaken people out there.

Statistically, some of them are going to have special needs children.  And an even smaller percentage of those are going to have a some sort of platform.  That platform, in all likelihood, will also host perfectly sane, logical, and correct people who also have special needs children.  All we have to do is determine which of these complete strangers is telling the truth.

Pause here for a moment of silent reflection.

The problem is we have no easy test for sanity, reason, and accuracy.  There is no database in which to check he said/she said.  We cannot know them all personally.  I happen to think myself a very good judge of character.  I think I’m open-minded, and I attempt to remain civilized.  But I am not so confident in my people skills or psychic ability to champion the cause of a viral internet story without having been present in the room in which it supposedly happened.  I won’t risk ruining the lives of the innocent people who are sometimes going to be wrongfully accused.  That’s not my job.  Detectives, investigative reporters – have at it.  Like the rest of you, I’m interested in the story alright.  But verifying isn’t my area of expertise. So, I’m not going to run in and tweet, share, or blog about it until someone with complete access to all of the pertinent information reports their findings and not just what one side shares with the media and internet.

I have taken an informal poll.  It’s informal because it is laughably imprecise.  Statisticians, avert your eyes.  I divided up everyone I know (or attempted to) and separated them into categories: Reasonable vs. Unreasonable.  I came up with 5% of the people I know being unreasonable, based upon my own unstated criteria and subjective appraisal.  Admitting the fragility of my statistical reasoning, I still confidently maintain you could try the same and come up with a similar number.  (Note: If the number you come up with is 95% or higher, you are the unreasonable one and should seek counseling and perhaps medication.)  Go ahead, try it.   I’ll wait here.

I am a teacher.  And I’m going to say something that is going to be unpopular with 5% of the special needs parenting population.  There are some really crazy parents out there who have special needs kids.  Some of them expect teachers to have no life whatsoever.  Some of them have mental problems.  Some of them are just plain mean.  Some of their children actually lie.  And, every now and then, one of them decides to get your goose.  There isn’t a veteran teacher alive who hasn’t had one come after them.  But usually, those issues involve grades, complaints about teaching style, etc.  The world doesn’t pay any attention, and the matter is resolved to varying degrees of satisfaction.  But special needs individuals?  What else can bring about such strong feelings of rage and empathy in public opinion?  Yep — God help the special education teacher falsely accused of abuse or the doctor accused of malpractice.  Ditto for therapists, social workers, hospitals, police, medical personnel, bus drivers, and anyone charged with the care of this population.

In my 15 years of teaching, I have both seen and experienced false accusations by parents.  Sometimes, it isn’t an outright lie but a simple omission of fact that skews how outsiders view the situation.  I have also listened to friends in the medical profession express frustration with similar incidents.  And, here’s the thing.  All of those people I mentioned who work with children?  They can’t defend themselves to you.  By law, they are not allowed to speak to the media, clarify the facts, or share additional information.  They can’t tell you about the accuser’s history.  They are required to stand still while the crowd throws things at them.

It is one thing to demand an investigation.  I’m all for that.  But that’s not what we usually do.  We tend to insist upon a judgment that concurs with our own and demand action –a firing, a medical treatment/procedure be completed, or prison time.  This court of public opinion known as the internet –most especially for those of us in special interest groups – is a dangerous one in which to be a defendant.  Since, I’m no prosecutor, I won’t be pressing any charges.  Yes, I believe that we need to champion the cause of helping our own children and future persons with autism to have greater access to their world.  Yes, sometimes we need to be outraged.

But I also think that we need to be more discerning in our social media and analysis of the “news”.  Just because someone created a Facebook fan page doesn’t make the story true.  We need to remember that all are not who/what they appear to be.  And just because we can’t stand the thought of such a thing actually happening to our own precious children, it doesn’t mean that it really did happen to someone else’s.

No, I think these words are wise indeed: “Trust, but verify.”

And if verification isn’t possible, don’t state them as fact, but direct the matter to those who can.

It’s a Golden Rule kind of thing.

The Place Where There Is Time for Everything

Daylight Savings Time, known to our European friends as summer time, was invented for the purpose of extending daylight hours past the end of a normal working day.  This, in theory, is supposed to allow one to get a lot more done whilst one can actually see what one is doing.  I am one of those folks who actually likes Daylight Savings Time – not because I get any more accomplished, but because I find the immediate darkness of winter a tad depressing.

With the recent change to Daylight Savings Time, it occurred to me that, perhaps instead of merely joking about it, we should actually explore increasing the number of hours in one day.  Because there simply isn’t enough time.

A wise nurse practitioner once gave me her opinion of why so very many people are taking antidepressants these days.  She doesn’t think that people are getting psychologically weaker and just taking the easy way out.  She believes it is because the human brain was not intended to take on the level of stress – due to multitasking – that we load on it in our very busy society.

People once lived simply.  They got up – after a full night’s sleep.  Presumably, more folks had a good night’s rest due to the lack of TVs, video games, and other electronic distractions.  Some of you who have ever forgotten to pay the electric bill may have discovered this for yourself.  They ate breakfast – because the kind of work they would be doing required it.  Then they went about their day and worked – the physical kind.  Because physical work reduces stress, they worked out many of their frustrations.  Then they went home.  Where, because they didn’t have telephones, cell phones, computers, passive entertainment, etc., they passed their time actually talking to their families.  Connecting to their loved ones.  Discussing their difficulties.  Perhaps reading a book or writing a letter.  Before too long, it was dark, and they went to bed – repeating the cycle over again.

They were not jumping in the car, racing to take Child A to dance class and Child B to soccer practice.  They weren’t on hold trying to get their cell and TV service switched.  They weren’t filling out paperwork or online forms for the million things we must do each day.  They worked hard, yes.  Very hard.  But they didn’t multi-task to the extent we do today.  So, despite all that needed to be done in their lives, their tasks didn’t increase in complexity from one moment to the next.

Contrast that with today’s world.  In the course of my day, I arrive to work, observe the bells, teach, discipline, talk to parents, answer the incessantly ringing phone, order books, process books, utilize 4 to 5 completely different databases/software programs, email multiple persons, copy, scan, direct aides, assist teachers, proofread, talk to students, recommend books, and so much more.  I have no doubt that most of you experience days similar to mine.  All while keeping in the back of your mind who you have to call tonight, what meeting you must attend, which doctor’s appointment to go to, which items you must buy at the grocery store, your child’s band concert, the birthday gift you must order online, the reservations you must make, get an oil change, pick up prescriptions, etc.

It’s not what our minds and bodies were designed to do.  Please do not misunderstand me.  I am by no means a nature girl and would not be the least bit thrilled if you invited me to ditch it all and live on a farming commune.  I like the modern world very much thank you.  But it doesn’t mean this was what nature intended for me.  So, in that nurse practitioner’s view, antidepressants are helping people’s brains to adjust to unnatural circumstances.  And, while I personally am not taking antidepressants, I happen to think she is correct about the unnatural mental burdens of the modern world and the need for modern medicine to alleviate it sometimes.

I thought she was correct years ago when she first said it.  But now it is beginning to take on new truth.  Callum has been having six private therapy sessions and one Early Steps infant child development specialist session a week.  He has to return for a look at his ear tubes.  We need to meet with the doctor to discuss trying him on melatonin.  Which brings to mind the insurance fiascos I have been having and the three separate phone calls I am supposed to make to 1-800 numbers constantly busy.  I am supposed to meet with a CARD representative soon and follow up through the university regarding behavioral therapy.  Last week he was diagnosed by an out of town specialist and yesterday was his IEP.  We are supposed to model language at all times, keep non-engaged stimming to a minimum, train him to tolerate joint attention type activities for increasing periods of time, attempt to engage him with the books he is completely uninterested with, use PECS, engage him with the iPad, and on and on and on.  All this while doing all the parenting things we would already normally be doing for both him and his typically developing – though exhaustively precocious – 4 year old sister.  While I’m working full-time and my husband is working on his degree.

I am not complaining about parenthood.  I am so very blessed to have my beloved little stinkers and know it.  But I am complaining about the lack of hours in the day to get done everything that must get done and still have time to sleep, catch up with loved ones, feel like a human being.  I am complaining about the ever-increasing speed and complexity of our lives.  Because the world wants way too much.  It wants too much if you aren’t parenting a special needs child or being a caregiver in some other capacity.  But, if you are, all of those must-dos for a loved one who cannot do them for themselves build up into a cacophony of mental strain that can cause insomnia, depression, lack of immunity, and exhaustion.

In researching a university behavioral therapy study for my son, I found another study being done by the same department suggesting that depressed mothers complete less child interaction homework than non-depressed mothers.  It occurred to me that, perhaps, the depression isn’t causing less therapeutic homework.  Maybe those mothers are depressed because there aren’t enough hours in the day to do said homework.  I know that I wouldn’t likely be posting to you if insomnia weren’t aiding my writing time.  There simply aren’t enough hours in the day.  I have felt enormous guilt over the things that I don’t have the time or energy to accomplish.  The extras I can no longer take on at work.  The repeated requests to have to take time off to go to this meeting, that doctor, or whatever keeps coming.

And the hard reality is that the world is too busy creating new demands upon itself to worry about how we are keeping all the juggling balls in the air.

No, I don’t want more daylight with my hours.  I want more hours with my daylight.

Years ago, I read a poem by the Israeli poet Yehuda Amichai titled “A Man in His Life”.  It is about all the things we must do that we do not have time for in our limited existence on Earth.  I’ve read a few different translations* of it, but this one is the most beautiful to me:

“A Man in His Life”

A man in his life has no time to have

Time for everything.

He has no room to have room

For every desire. Ecclesiastes was wrong to claim that.


A man has to hate and love all at once,

With the same eyes to cry and to laugh

With the same hands to throw stones

And to gather them,

Make love in war and war in love.


And hate and forgive and remember and forget

And order and confuse and eat and digest

What long history does

In so many years.


A man in his life has no time.

When he loses he seeks

When he finds he forgets

When he forgets he loves

When he loves he begins forgetting.


And his soul is knowing

And very professional,

Only his body remains amateur

Always. It tries and fumbles.

He doesn’t learn and gets confused,

Drunk and blind in his pleasures and pains.


In autumn, he will die like a fig,

Shriveled, sweet, full of himself.

The leaves dry out on the ground,

And the naked branches point

To the place where there is time for everything.

* Translated from the Hebrew by Benjamin Harshav and Barbara Harshav

Reflections Upon D-Day (Diagnosis Day)

A year ago, we took Callum to see a developmental pediatrician.  And, because some of his symptoms were somewhat atypical, the doctor said he was hoping he might just be delayed.  He felt there was a chance that it might not prove to be classical autism and asked us to return when our son turned three.  We continued speech, occupational, and physical therapy and waited it out.

During this time, I read.  And researched.  And analyzed.  And over overanalyzed.  I blogged.  And socially networked.  And I had built up in my mind the moment when we would finally receive a diagnosis.  I had envisioned a private room, numerous assessment papers, and difficult discussions of cognitive ability and prognosis.  I expected to have it really hit me on some deeper level that I couldn’t anticipate and to maybe break down.  I thought it would be the really big deal it has been for so many of my special needs parent friends.

So, yesterday, we drove an hour to the University of Florida, my mind drifting over different possible scenarios.  I thought we would have a long wait in the lobby.  But they called us back immediately.  I expected a dreary wait in the examining room.  But the doctor walked right in.  I was ready for him to pull out all of the various assessments from the private therapists, Early Steps, etc.  And I figured he would order up a full day of assessments at Shands.

Instead, he walked in, took one look at Callum stimming over a dangling cord, and said, “So, it doesn’t look like there has been a major change.  I was hoping it might go the other way.  But we are definitely looking at autistic disorder.”  He asked a bunch of questions about his behaviors and speech.  And he spent a little time interacting with Callum – asking him to draw, give him a high five, and to return his pen (of which he did all three).  He then told us to continue all of his therapies and handed us a brochure for a University of Florida training program for parents – Child Directed Interaction.  He suggested we contact the Gainesville CARD.  And he handed us a lab order for chromosomal testing.  And that was it.

Realizing he was intending to leave, I asked the question, “So is this paper a formal diagnosis?”  The doctor looked at me and said, “Well, he was diagnosed a year ago, but I was hoping he would go in the other direction.”

So, not only was our diagnosis uneventful – it, apparently, happened a year ago and no one told me.  No, really.

I suppose some might accuse me of not being terribly observant, but I submit that if someone had told me my son was formally diagnosed with autism a year ago – that I would have noticed.  My best guess is that it happened following our visit and after the doctor or whomever graded the parent questionnaire he had me fill out before leaving last year.  I realize it wouldn’t have made any difference in our day-to-day lives.  I’ve known since early on it was autism.  He has received therapies since the age of 19 months.  He has received the benefits of Early Steps and qualified for ESE Pre-K placement.   With the exception of possibly (but not terribly likely) receiving social security disability benefits and a tax break, nothing would be any different for him having that official label.

So, instead of experiencing a fresh wave of grief and anxiety or a surge of relief and renewed purpose, I was left feeling strangely blank and mildly disconcerted.   Like when you follow two characters throughout an entire romantic drama – only to be left with questions of whether or not they will really end up together.  It was anti-climactic, to be sure.

Except for the part where we left the doctor’s office to head over to Shands for chromosomal testing.  And after handing over our insurance information, we were denied.  The wonderful woman in the outpatient lab trying to get it authorized went above and beyond the call of duty.  She explained that this type of testing cannot be conducted in the lab they demanded we go to.  They demanded his primary care pediatrician see him instead.  She (and we) patiently explained the need for a specialist. They then demanded that the specialist call in the authorization.  The specialist demanded the pediatrician call it in.  The pediatrician’s office swore to call it in.  And then went to lunch.  We went to lunch.  We returned.  The pediatrician’s office then said it would be three days.  Then therapy called in the middle of all that and shared that Healthease had denied his therapies for the third week in a row and they would resubmit.

So, I discovered Children’s Medical Services across the hall.  Children’s Medical Services is a group of insurance programs for kids with special needs.  They were pressed for time, so the nice lady gave me a card with a phone number to call.  I started to get a little teary. So, the nice lady insisted someone who could help me come out front anyway.  And that lady turned out to be super kind and helped me to begin paperwork to switch him out of the awful state health insurance program he is in and into theirs.  And then she suggested that I go down the hall and meet with a social worker to find out about anything else I might need to know about.  And that guy was also awesome and directed us to some other resources.

(And all of these people making up the staff of the University of Florida at Shands Outpatient Lab, Children’s Medical Services branch, and Social Services branch restored my admittedly shaky faith in humanity.  So a big “Thank you” to them.  You folks rock.   And a loud “Shame on you!” to Healthease of Florida.  Like Aunt Em, I can’t say what I think of you.)

So on my personal D-Day, I am reminded of the truth about autism diagnosis.  The label allows you to approach,  but you still have to storm the beaches yourself.   You still have snipers raining fire upon you.  You will see and hurt for the casualties of those just like you, also navigating their way through their battles.  And, if you finally reach safety, you will look back at the devastation these battles have left behind and wonder.  Yet you will know that your child – and every child – are worth any sacrifice.

For in the immortal words of Winston Churchill, ” We shall fight…We shall never surrender.”

But first we need some snuggle time and to crawl in bed.  A good book.  A glass of wine.  And some peanut butter fudge.  Then, after a good night’s sleep, we shall commence fighting in the morning.  We’ve had a long day.

So, what was D-Day like for you?

If you liked this post, you might also enjoy: “So You Think Your Child Might Be Autistic” or “From the Rooftop: Autism Disclosure”.

Or you might enjoy this post about diagnosis from Tales from Tangerine: “A Diagnosis…Sort Of”.

No More Wait and See in Autism: A Plea to Pediatricians

Dear Pediatricians,

Let me first preface what I want to say by telling you that I truly appreciate what you do.

Many years ago, my best friend realized that she had missed her calling and decided to go to medical school.  I remember her journey from the application to med school letter I helped her edit, through her move to Miami to attend med school, the frantic hours of studying and coffee overdoses, through her years as an overworked, sleepless resident, to the very non-glamorous and non-fortune amassing reality of opening her own practice.  I remember conversations over the phone in which she enlightened me just how much there is for a physician to know and how little time there is in which to learn it.  People tend to see physicians as living high on the hog – when, in reality, you are business owners also struggling to maintain a profitable practice while jumping through government and insurance hoops in order to provide the best care for patients you are still just as dedicated to as you were when you began as a young, idealistic medical student.  All while having to maintain a straight face while calmly explaining to your patient that, no, the diagnosis is likely a hangnail and not that exotic tropical cuticle parasite he read about on an online health board.  I haven’t lived it, but I understand that the very act of being a physician is, in many ways, a sacrifice that is often unappreciated.

So, I do not view you as the enemy.  In fact, pediatricians are my favorite kind of doctors.  Why?  Because you guys answer the phone on weekends and weeknights.  You actually have an answering service.  You folks will see a sick patient faster than any other kind of doctor.  And many of you will open up on Saturday mornings.  For when your patients get sick, they tend to get sick fast.  And you know that when your patients are sick, their parents are agonized with worry – thus creating two patients really.  You must endure tantrums, being bitten, ear-piercing shrieks, hysterical mamas, patients who cannot speak for themselves, heartbreaking tears, and witness abuse and neglect on a frequent basis.  As a teacher, I do a little of that myself, so I have a particular fondness for you guys.

Now that I’ve expressed how wonderful you really are, let me tell you a little bit about me.

I am the mother of a soon-to-be three-year-old on the autism spectrum.  I say “on the spectrum” because we do not yet have our official diagnosis.   (That process begins next month at our return visit to a developmental pediatrician.)  I know that one is not supposed to claim a diagnosis before it is given, but autism runs in my family.  And, when you’ve seen it, you know it.  Even if that weren’t the case, I’m a teacher.  In fourteen years, I’ve seen a little bit of everything.  So, I began our journey with autism already somewhat familiar with it and its signs.

My son has been delayed in every developmental area, some more than others.  He rolled over a few weeks late.  He sat late- yet not overly so.  But everything he did was just a little later than expected.  He never crawled properly (a knee walker).  He didn’t point.  He didn’t progress much past “Mama” and “Daddy”, and he didn’t begin walking until 16 1/2 months.  We were also a little bit worried about his hearing, but he had tubes and frequent ear infections, so a possible hearing loss wouldn’t have been a surprise.  Knowing that none of these things in isolation were definitive indicators, I mentioned them to our pediatrician in early visits but I didn’t panic.  He was, after all, affectionate, interactive, and full of joyful expression.  So we kept our cool.  At least until he began flapping.  The kind of flapping that anyone who knows autism recognizes.  I knew.  And I knew enough to get moving.

I took him in for a developmental assessment the day he turned 18 months old.  That was my cutoff point when I gave myself permission to panic. 18 months until “wait and see” would no longer be an option for me.  Our normal physician was on vacation, so we took him to see another doctor in that practice.

And the minute the doctor opened the door to the examining room, my son turned, looked him in the eye, and gave him one of those devastatingly cute smiles of happy toddlers.  We had been sitting in a very clean, tidy, sterile room with nothing to be distracted by but a small bucket of toys.  So, when the doctor walked in, my son was at the toy box – delightedly scattering them all about.

I know exactly what this doctor was thinking.  He, a wonderful and dedicated pediatrician, surely had seen many cases of severe autism in his years of practice.  And he was looking at a little boy smiling and hugging his mother, showing an interest (albeit very brief) in someone entering the room, making eye contact (again – very briefly), and sitting in front of a toy box.  I know this doctor had the skills to recognize severe cases – head banging, no interaction whatsoever, aversion to touch, etc.   And, seeing an absence of those behaviors, he reassured me that he wasn’t worried.  He did suggest that, if I was still worried, I contact Early Steps for an evaluation .  And he did listen to me while I discussed specific behaviors.  But he didn’t see what was already evident to the trained eye.  Here is what he missed:

1.  Though my son did show an interest, it was brief, very brief.  18 month olds should maintain more consistent eye contact when spoken to and hold it for longer than my son.  They should show an interest when offered things and a desire to interact.  And not just on their own terms.  On their own terms is a phrase known all too well by parents of autistic kids.

2.  My child, though not excessively delayed in any one thing, did show a consistent tendency to be behind in every developmental area to some degree.  This is very common among kids with autism spectrum disorders.

3.  He wasn’t pointing.  And I don’t mean just not pointing with an index finger.  He wasn’t indicating what he wanted in any way or drawing my attention to things he wanted me to see – ever.  This is a Big Red Flag.  The misconception is that it is but one symptom of autism in a list of many.  Nope.  This one alone is enough to warrant further investigation of a developmental delay.

4.  My son was sitting with the toys.  But he wasn’t playing with them.  He was repeatedly throwing them.  But not playing.  Children with autism spectrum disorders often do not know how to play with toys appropriately.  The fact that he was interacting with literally the only items in the room did not mean he was playing appropriately.  There is a big difference between playing with a toy truck and repeatedly banging it on the floor.

5.  We voiced suspicious of a hearing problem.  No.  This, in itself, is not an indicator.  The indicator is that it was combined with so many other symptoms.  Almost every parent I know with and ASD child was worried about a hearing problem first.  Almost always, their child’s hearing was perfect.

This smiling affectionate baby you see here making eye contact? He is on the autism spectrum. It isn't always so obvious.

Had he been looking at symptoms presenting more severely, I believe he would have pulled out an M-CHAT.  I do.  He is a good doctor and one I would return to.  Truly.  He just wasn’t as cognizant of milder symptoms of autism.  I didn’t know about the M-CHAT, so I walked away happy – desperately wanting to ignore the nagging voice inside my head and so relieved that a doctor wasn’t worried.

Fortunately for my son, that nagging voice wouldn’t shut up.  I had seen enough autism and read enough about it that my mind would not rest easy.  Being a school librarian, research is instinctive to me.  So, I jumped online.  That’s when I found First Signs.  And that’s when I discovered the M-CHAT.  I printed it out and answered the questions.  And he flunked it.  (By flunked, I mean that he scored just one number above passing without a need for further investigation.)

And here’s the thing.  He only just flunked it.  Only enough for it to say, “This may warrant further evaluation.  Take this to your doctor”, etc.  So, I called back and got in to see our regular doctor.  We talked.  She, too, is a wonderful doctor.  She also told me she wasn’t too worried.  But, after seeing our M-CHAT results, she went and got another M-CHAT and proceeded to interview us to complete it.  Again, he just flunked.

I love our doctor.  She listens and she doesn’t presume to know everything.  And she had already ordered up a physical therapy consult.  But it is because of that barely flunked M-CHAT that she referred him to a developmental pediatrician and ordered up additional speech and occupational therapy consults.  She, too, saw my son’s strengths and wasn’t anywhere near as convinced as me that there was an autism spectrum issue looming.  At that point, no one was but me.  Not even my husband.  I remember psychoanalyzing myself and wondering if I was developing hypochondria by proxy.  Even when we had the Early Steps screening,  the therapists evaluating him compared him to more severe cases and told us they didn’t think it warranted going to a developmental specialist.

But it did.  And now everyone sees what I was so worried about then.  This is one of those times when “I told you so” isn’t quite so gratifying.

So, finally I get to what I need to say.  I know that you cannot be experts in everything.  I understand that medical specializations exist for a reason.  But the problem is that, too often, our kids won’t be seen by specialists soon enough — because the need for a referral wasn’t recognized.  To further complicate matters, your patient won’t be pestering you to get one either.  His parents will likely be so relieved to hear there is nothing to worry about that they might not press harder, even though their instincts might be screaming at them that something is wrong.

And this is a very bad thing.  Because the younger a child is, the greater the likelihood of therapy making a significant difference in their future abilities.  There was a time in which conventional wisdom dictated that we wait until the age of three or even later to seek a diagnosis.  There was a fear that the child might be misdiagnosed – “labeled”.

Let me state emphatically that the worst thing that can happen is not a label.  The worst thing that can happen is that a child does not receive needed intervention for months, likely years after they demonstrate a need for it.  Children can be unlabeled.  What they  cannot do is turn back the clock.

Autism spectrum disorders are a complicated thing.  There is no magic combination of symptoms that guarantee a diagnosis.  Some ASD kids walk on their toes.  Mine didn’t.  Some flap.  Others don’t.  But there are clear red flags.  And those red flags need to be recognized sooner – and not in just the severe cases.

I know that you are busy treating patients.  I know that you have lives of your own.  And I’m sure that stack of physician journals you want to keep up with grows larger every day while you are working longer and harder hours.  But advances in autism research are being revealed almost every week it seems.  My concern is that I don’t believe this research regarding early diagnosis and earlier methods of detection is being absorbed by our pediatricians soon enough to make a difference for the kids who need it.

I have a combination of over 4,000 subscribers to my blog, Facebook, and Twitter accounts.  And I hear from dozens of parents each week, often sharing stories of a delay in needed diagnosis and early intervention.  This tells me not that our pediatricians don’t care.  Of course you care.  It tells me that detection of autism and other developmental delays is not where it needs to be in this country and in others.  It tells me there isn’t enough continuing education in autism for pediatricians.  It tells me that, even though 1 in 110 children are now being diagnosed with autism, that we aren’t being nearly aggressive enough in working to identify these kids early enough to begin therapies that will allow their little growing minds every opportunity to forge new pathways to future learning – NOW.  Later is not okay.  It is needed NOW.

So I’m making a plea with pediatricians all over this country to make a conscious effort to reevaluate and expand their knowledge of autism spectrum disorders and their symptoms – even in the likely mild cases.  In quiet examining rooms with few distractions, our children’s symptoms may be subtle.  I’m asking you to pay particular attention to new research in developmental disorders.  I’m calling on The American Acadmy of Pediatrics to work even harder to bring autism to the forefront of pediatric medicine discussion.  ( This official statement is not enough.)  Most parents are familiar with or know a child with conditions such as diabetes, vision problems, and ADHD.  But not every parent knows the symptoms of autism or knows a child who has it.  Relying too much on parental awareness is not a good strategy as there are simply too many people who view autism in terms of the movie “Rainman”.  Because people are usually more familiar with severe symptoms, too many mild to moderate cases are being missed until well after these children begin school – years after therapy should have begun.

 I am not suggesting that physicians deliberately ignore the DSM and diagnose autism before it is indicated.  I know that some patients simply do not neatly fit the defined disorders.  But the autistic label isn’t what is important.  The screening and early intervention is.  A “wait and see” approach to autism screening and intervention is not acceptable.  Yes, some children do take a bit longer to walk, talk, etc.  And, if a child is simply a bit behind with no other indicators of autism, the screening will reflect that.  But too many parents in my shoes have listened to bad “wait and see” advice when their children were clearly showing multiple symptoms of autism.  Advice that has haunted them and made them wonder what might have been different if only their precious children received help earlier.

While my child was fortunate enough to have been born into a family that – through experience – recognized subtle symptoms of autism, not every child is.  My son began therapies at 19 months old.  Most don’t get that.  Too many children in this country are not diagnosed until well after the start of preschool and kindergarten, particularly in minority communities.  This isn’t because their parents are neglecting them.  It’s because there isn’t enough awareness.  And that means that pediatricians around this country are going to have to step up to the plate and do better with this.

Because, in too many cases, you are likely to be the only person in that child’s life who will both recognize the symptoms of autism and be able to steer their parents to the therapy those children need Just you.  You may be the thing standing between that child and early therapy.  For that reason, our kids are going to need pediatricians to become leaders in autism awareness and education rather than mere facilitators to access other physicians.

You are on the front lines of autism.  And your patients and their parents need you to charge fearlessly ahead.   For each time a developmentally at-risk child receives early intervention, there is hope for a brighter future filled with greater opportunity.

“He is the best physician who is the most ingenious inspirer of hope.”

-Samuel Taylor Coleridge

Wondering if your child or a child you love might be autistic?  Here’s what to do.

So You’re Wondering If Your Child Might Be Autistic…

So you’re wondering if your child might be autistic.  I know.  I’ve been where you are sitting right now.  Searching the internet for signs of autism spectrum disorders.  Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal.  Telling yourself he is just a little behind.  Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism.  And now you are wondering if you are just being paranoid.  You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life.  Yep, I’ve been there – and quite recently.

What does autism look like in a young child?  Well, the important thing to remember is that, just like everyone else on the planet, every autistic child is a unique person.  There are common behaviors that they share, but a child can still be autistic and not share every common autistic behavior.  Remember that.  Because getting hung up on that can make you fool yourself.  Autism spectrum behaviors do not exist in isolation.  Just one of them won’t make a child autistic.  But you put several of them together and you’re possibly looking at an autism spectrum disorder of some kind.

The one that seems to be noticed first amongst the greatest number of parents is a concern that your child might have a hearing problem.  I honestly don’t know anyone with an autistic child who hasn’t worried about this.  I’m sure there probably are some.  I’m just trying to tell you that a concern about a hearing problem is really common.  You might notice that, despite calling your child’s name repeatedly, that he doesn’t respond.

You might also worry that he has some kind of persistent ear infection.  Why?  Because you might have noticed your child repeatedly covering his ears.  Especially if it is noisy or chaotic.  You have probably taken him to the doctor, only to be told there is no infection – perhaps more than once.

You may notice that your child doesn’t seem to know how to play with toys correctly.  Instead of rolling his little truck around (or kissing her baby doll), he just sits and repeatedly spins the wheels.  Or bangs the baby doll, over and over and over.  And over some more.  He might fixate on a toy that isn’t a toy – such as a plastic hanger, a spoon or a string, or a button on your shirt.  You’ll try to interest him in something else, and he’ll drop it and go right back to the non-toy.

You probably bought him a lovey of some sort.  You may notice that your child doesn’t have an attachment to any sort of stuffed animal or blankie.  Instead, he just might carry around that plastic hanger everywhere he goes.

He probably at one point was a good eater for you.  But suddenly, you may start worrying about all the foods he will no longer eat.  He may have once loved bananas, but now won’t touch them.  He might begin to refuse everything but dry foods like crackers or chicken nuggets.  He may consent to eat only one food period.  And withholding food a little longer to make him hungry won’t work.  He’ll just cry and stay hungry until he gets the only foods he will eat.

Your child may not show affection in the same way as other children.  You might find him squirming away or resisting being cuddled.  Or you may find the opposite.  He may have strange ways of loving all over you, rubbing his arms and legs all over you, maybe even strangely wanting to run his mouth all over your arm.  His odd ways of handling touch may also include an aversion to touching things that are wet, or gooey, or crumbly.  Or you may find him smeared all over with anything spreadable he can get his hands on, rubbing it in over and over again.

You may have noticed that your child does not point to what he wants.  This is a big red flag.  He also may not ever bring anything to your attention, like a toy or the stars.  In fact, you have may have noticed that he doesn’t attempt to share your attention, like turning to see if you saw Elmo do that silly thing.  And, if you try to point something out to him, his eyes might not follow the direction in which you are looking and pointing.

You might be losing a lot more sleep than you did with your first child or what your loved ones told you was typical.  He might not have ever settled into a sleeping pattern and may continue to wake you repeatedly each night.

The thing that might be worrying you the most is that he either isn’t talking or that he stopped saying the words he used to use.  He might not be saying single words such as mama, daddy, ball, juice, etc. by 18 months.  Even more disturbing is that he might not try to communicate with you in other ways, such as taking your hand and leading you to what he wants.  He might be delayed in other ways as well, such as crawling, walking, using a spoon, etc.  When he does walk, you may notice that he prefers walking on his tiptoes.

And, you just might have noticed something strange he is doing with his arms.  It looks a little like that hand flapping that people do when they bite into something that is way too hot.  Except he does it a lot.  Especially if the TV is on.  He may just flap away.  And stop.  And then flap again.  And maybe moan or grunt in his excitement.  (Please don’t try to stop him from his flapping.  If he isn’t autistic, he’ll stop one day.  If he is, you are trying to stop a mockingbird from singing.  It is simply how he expresses his excitement.  You’ll get used to it, don’t worry.  Flappiness?  It just is.)

So now the Theme to Jaws is playing in your head.  And you are asking yourself, “What do I do?  Should I call my doctor?  What if he doesn’t have autism?  What if everybody finds out and treats him differently?”

Here’s what you should do.

Call his doctor.  Explain to his doctor each and every one of the symptoms your child has.  If your doctor waves away your worries and says, “Let’s wait a little longer and see”?  Either convince her, insist, or see another doctor.  Even very good doctors may not recognize some of the signs.

Get an autism screening.  I’ll repeat that.  Get an autism screening*.  Even if your child were falsely diagnosed with autism-even if he is simply a late bloomer- it won’t make him autistic.  He’d simply continue to thrive, and you could throw that diagnosis in the trash.  Or get him undiagnosed.  A false diagnosis is not the worse thing that could happen.  The worst thing that could happen is that your child is autistic and would miss out on years of beneficial therapy.  The worst thing that could happen is that dark regret that would haunt you years from now that you didn’t trust your gut.  There are a lot of special needs parents out there who can tell you about that.  Don’t let that be you.

And if he is autistic or has Asperger’s?  You know what?  You’re gonna be okay.  Yes, I’m talking to you.  Don’t believe all that foolishness about it taking a special person to raise a special needs child.  It doesn’t.  It is the child who makes you special.  Really.

You are going to grieve.  You are going to grieve for things you took for granted that may not come to pass.  He might not ever play Little League, be a Boy Scout, or skateboard.  Then again, he might.  The not knowing is the hardest part.  Hope is a roller coaster.  You will need to remember that your child has not been taken from you.  This is the child you were given all along.  And no one, no one, is better suited to be his champion.  You are allowed to cry.  Try not to do it in front of him.  And then you are going to have to put on your proverbial Big Girl (or Boy) Panties.  Suck it up.  You already knew you’d walk through fire for him.  So suit up.

And I’ll tell you something else.  Autism, at its worst, can rob you of a lot of things.  But it doesn’t have to be a tragedy.  It’s still early.  Autistic children may not ever learn to talk or care for themselves.  But they will still give you joy and teach you many things about love and gratitude.  Autistic children may grow up to need support, but have happy, productive, and fulfilling lives.  Some autistic children may go on to great things, their minds uniquely suited to bring something to humanity that it hasn’t seen before.   You know about Einstein, Mozart, Andy Warhol, Temple Grandin, Dan Aykroyd, and other successful people across the autism spectrum don’t you?  Yep, they are or are suspected to be [have been} on it.  But there are a lot more people out there on the spectrum who are co-workers, friends, parents — just everyday folks who see the world from a different vantage point– than you might expect.

Then, with diagnosis in hand and therapies started, reach out.  Join a support group.  Read books.  Write a blog.  Advocate.  Join the online autism spectrum community – made up of ASD people, their friends and loved ones, doctors, therapists, teachers, and more.  They are an amazing group of people whose arms are open to you.  (I just made that discovery myself.)  And repeat to yourself:  I can do this.  This is not a tragedy.  And I am not alone.  

For you really are not alone.

Note:  Little girls can, of course, be autistic as well.  For the sake of brevity, I used a male pronoun.

*The autism screening test for toddlers is called an M-CHAT, and it’s free.  You can even print it off the internet.  Either way, your doctor will know about it.

Patience Is Not One of My Virtues

“Patience:  A minor form of despair disguised as a virtue.”  ~Ambrose Bierce

I’m a fairly patient person.  I’m not one to speed.  I can frequently be heard telling my husband, who has severe ADHD, to remain calm and that we will find whatever lost thing he is looking for.  I don’t get all that upset waiting in line.  And you’ll never hear me getting angry with a server because our food is taking too long.  I’m capable of being cool as a cucumber and have had more than one person proclaim me the best person to teach others how to drive a standard transmission.

So, I would have thought that I would be a good candidate for tolerating the wait-and-see of my son’s developmental delays.  For some things, I have been.  My husband gets all bent out of shape worrying about Callum’s self-limited diet of chicken nuggets and, well, basically anything dry and crunchy.  He was terribly worried about our son’s slight delay in walking.  And he asks on almost a daily basis, “When should we start potty training him?”  I know that it annoys him how calm I remain about these topics.  I was convinced that he would walk — and he did at 16 months.  I keep telling him that eventually Callum will eat other things and that we need to worry about more important things. ( I don’t really know this to be true, but it seems to pacify him — so I keep saying it. ) And potty training?  With autism already in my family, I am well aware that we could be in for the long haul.  At the very least,  Callum will probably be behind everyone else with regard to toilet training.  So, I choose not to sweat those things and keep up my annoyingly calm facade.

And it is a facade.  Because underneath all of my protestations that all will be okay, I am terrified about one thing.  When is he going to talk?   I know I am supposed to adopt an attitude of keeping-up-therapy-and-hoping-for-the-best, but I confess I suck at it.  I know that talking is not the measure of success for autistic people.  I’ve read stories and blogs about lots of ASD folks who use assistive communication and writing.  But I’m selfish.  I want him to talk.

Since I was a little girl, I have always been a lover of language.  I was a bookworm who read my first pictureless novel in the first grade and was reading almost a book a day by middle school.  When I came across a word I didn’t know, I ran to a dictionary and practiced using the word until I knew it.  Idioms have always fascinated me, and I have always sought out their origins.  When my mother was going through her antique shopping phase, I would find myself in the back of the store, looking through the old books, scrapbooks, and antique diaries.  Finding just the right word when writing, for me, is akin to a painter finding just the right color or brush stroke.  I happen to think Wikipedia is one of the great wonders of the modern world.  And I happen to believe that being illiterate is just about the worst thing that could happen to a person.  I’m the aunt who gives books to children for holidays, and I am the moderator of not one, but two online reading groups.  In my teaching career, I have been both an English teacher and a school librarian.  Suffice it to say, language defines me as a person.

But language might not be part of Callum’s life.  I don’t need my son to be captain of the football team, popular, or a genius.  But, oh, how desperately I want him to be able to communicate more than just his immediate needs.  I want him to have the power to seek information and to learn about his interests.  I want him to be able to seek out minds like his and make connections to the world.  I don’t want him to be trapped inside his own mind.

On one hand, I am trying very hard to accept that he may never talk.  After all, there are a whole lotta folks who have been in my shoes who prayed just as hard and didn’t get this very same thing.  And they have a lot of wisdom to share about changing one’s dreams and expectations.  I have no doubt that all of that is true.  The problem is that I’m just not there yet.  I’m still in that bargaining with God phase.  And I worry I’m never going to get past it.

I have said before that autism is a fascinating thing.  And it is.  But it is also a cruel tease — giving us small glimpses of the minds contained within before slamming the door shut again behind a series of elaborate and confounding locks.  It isn’t that I want him to leave the room altogether.  It’s just that I would like a really good window out of which we can see each other.

Right now, Callum is giving us a lot of good signs.  He has a few words that he uses when he feels like it.  Clearly, he has some receptive language.  Ask him if he is ready to take a nap, and he will dart to the other end of the house in an escape attempt.  He will sit at the table when asked and put his sippy cup down rather than throw it when we insist.  Say “bath”, and he enthusiastically makes a run for the tub.  He takes our hand and leads us to what he wants.  He’ll open the refrigerator and reach for or hand us the milk, saying “Pees?”.  And he’ll occasionally say, “Joo” when asked if wants milk or juice.  He gestures for help to get on the bed to jump.  If you tickle him and roughhouse, he will pull your hand back to do it again and say or sign “more”.  And he babbles with inflection all day long.  He has pretty good eye contact, is curious to see what we are doing, and “checks in” with us repeatedly when running around the house doing his thing.  There is no doubt he has the “communicative intent” all of the resources I have obsessively researched on the web have said are good predictors of speech development.  And he is still three months shy of being three.

Yet, I drive myself crazy because I know that, when it comes to autism, there are no certain predictors of anything.  And the broken record in my head starts again. I often feel stuck in a state of worry, and I can’t seem to get unstuck.

I’m trying to cut myself some slack here.  I know that I am new to this.  And I know that, at some point, I will move beyond the bargaining with God phase and into acceptance of whatever may be.  But I find it’s not happening fast enough to suit me – which brings me full circle back to the subject of patience once again.

How do so many of you reach that place of patience, peace and acceptance?  And how long will it take me to get there?