Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘diagnosis

The Autism Dream

with 6 comments

Last Day of KindergartenWork.  Work is busy.  Work is…American.  This is the American Dream.  You puts in hard efforts, and you gets big rewards.  We all buy that, right?

I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation.  The Autism Dream.  I was a new immigrant to this unfamiliar land, you’ll forgive me.

If I worked hard enough, if we did enough therapies.  If we tried this therapy, or bought this app.  If we just put in enough efforts, we’d get the rewards we deserved.

And what would those results be?  TIme has changed my answer to that, like it has so many values I took as sacrosanct.  But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.

Still, I had ambition, and I was prepared to graft.

Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling.  We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs.  That whole free and appropriate education provided by law just doesn’t apply to us overseas.

And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.

“Her language skills did not continue to develop as expected.”

Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:

– Language Disorder, Not Otherwise Specified

-Disorder of Written Expression

-Learning Disorder, Not Otherwise Specified

and maintaing her Motor Coordination Disorder and ADHD diagnoses.  Just words in stark black and white.

According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on.  As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.

Am I not working hard enough to make things better for her?

Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report.  She made an incredible achievement this year.  She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.

She has gained the affections and support of her peers and teachers.  She has faced the challenge of a new environment, and excelled there.  She has earned her spot in a school, and a place in the community.  She has made me proud every single day.

And that is The Autism Dream for us.  It isn’t that we can work away her challenges, it is that she can grow and develop and match them.  On paper, she doesn’t look good.  In person, she is incredible.

I’d be lying if I said this was easy.  I’m crying as I type.  But I know there isn’t a report that could be written which could ever capture how amazing this child is.  I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.

The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are.  She shows me truth, joy, and love.  She shows me what is truly importantl, and I never want to wake up from that dream.

 

Advertisements

Written by Spectrummy Mummy

May 31, 2013 at 3:50 pm

Will she ever get better? (Guest post by Lollipop)

with one comment

Today I received the following email, and the sender kindly agreed to my posting it here for us all to read.  I’m sure many of us have been asked this question, and many of us have been stumped for a response.  Tell us in the comments what you would say.  Over to Lollipop:

______

I’m a mother (married, American expat living in London for the last 20-odd years) of a 9yr old girl with PDD-NOS, sensory processing disorder, & semantic pragmatic language disorder.  She’s social, verbal (more verbose), she’s fun & funny, affectionate, a drama queen, she has a fantastic ear for music, and she’s mad about cats & just about anything pink.  Miss E attends a wonderful mainstream school, though the bulk of her day is spent in an ARP for SLCN (Additionally Resourced Provision for pupils with Speech, Language and Communications Needs). Miss E’s lucky, she has all the SEN support she needs, though it’s taken two tribunals, a High Court appeal, and finally moving across London to achieve it.

So much of your blog resonates with us (my husband also looks forward to each new entry), thank you for sharing your experience.  Even when we know we’re not alone, somehow it helps just seeing we’re not alone.

Something my mother had said recently has also been echoing around my head.   “Would Miss E’s differences ever be behind her?”  In other words, would she ever get better, would she ever improve so dramatically that her quirks were unnoticeable.  Unspoken was the question of whether Miss E would ever be fully able to cope on her own.

So.  There it was.  The question.  Mom had probably been just as worried about how it might be received as how she might be perceived for having asked it.

It was an innocent question.  And rather than any wish that Miss E were any other way or anything other than her very own wonderful self, it was a question absolutely laden with love & stemming from a genuine desire for life to be less of a struggle for Miss E (and by extension us, her parents).

If we suspend the now well-honed defensive reaction, and if we can set aside our own inner-voiced niggles & fears to be completely honest with ourselves, I suspect it’s actually a question all parents of kids with special needs will have wondered at some point.

In answering my mother, I dimly recall saying something to the effect that autism (even high functioning) isn’t something outgrown, that it’s a lifelong neurological impairment, but that the clinical picture grows & changes & improves along with the child as it grows & changes & matures.

Almost immediately, I realised that probably didn’t say much to someone who wasn’t as familiar as I am with all the medi-speak.  The moment had passed and I’d failed to give an adequate answer.  I’m sorry, Mom.

If I had a do-over, I might say:- “Miss E will always, always have challenges, Mom, it’s a matter of degree.  We fully expect Miss E will one day live a productive & fully independent life, though she will always, always perceive life a little differently – and that’s no bad thing in & of itself.”

What we know is that the more coping strategies we can give our kids now at a young age, the easier it will be for them to begin to rely on these as second nature.  Each coping strategy becomes a stepping stone for the next, and the next, so that a once blocked path to, say, socialisation, gradually becomes accessible or more accessible.

With my stepdad, I simply shared a favourite autism witticism:-  “Autism…It’s not a processing error.  It’s a different operating system.”  Although he adores his granddaughter just exactly the way she is, this seemed to open up a fresh perspective for him.  Sometimes, often, that’s enough.

Written by Spectrummy Mummy

March 1, 2012 at 7:16 pm

Buy one…

with 13 comments

Last week we returned to the hospital for the results and recommendations following Pudding’s reevaluation.  As you may recall, I was worried leading up to the appointments, but managed to reevaluate my own perspective for the actual testing.  Spectrummy Daddy was going to stay at home with the kids, but at the last minute decided we were all going.  I think he thought I as perhaps less calm than I appeared, but I reassured him.  She already has been diagnosed with an ASD, a lifelong condition, nothing is going to change that.

Actually, we do know that some individuals who meet the criteria for an autism spectrum disorder in early childhood no longer do so in subsequent evaluations.  It seems like early intervention can be incredibly effective for some children.  Other children receiving the same services, however, do not make the same improvements, and we don’t know why that is.  We know that therapy is essential for all children, but we can never tell how much progress will be made.

Pudding is in an intensive ABA/VB based preschool autism class.  She also receives private speech and occupational therapies, and we work on developing her skills at home.  We’ve seen her make progress in many respects since her diagnosis.  And yet, we’ve seen new difficulties emerge at the same time.  I knew we weren’t going to be one of the families to be told that their child no longer has autism.  At the same time, I’ve come to terms with Pudding’s differences, indeed, they are part of what makes her so special.  My job is to ensure that she has the best program for her that we can provide, which begins with accepting the diagnosis, and adopting the advice that we had come to hear.  We do the best we can with what we have.  So now let’s see what we have.

The psychologist began by confirming what we suspected: she does indeed still meet the criteria for ASD, and Asperger’s Syndrome is still the best fit for her (until the DSM-V gets rid of that diagnosis).  Her overall language scores were higher than average (pragmatic language of course being the exception).  The rest of her learning profile was very erratic, and in some instances, she performed comparatively worse than she had in 2009.  However, at the same time, she did better at the tests measuring ASD.  She is still an aspie, but less so than she used to be.  Right.

There was more.

She now meets the criteria for ADHD, and the doctor feels that her problems in this area go above and beyond the attention problems associated with Aspergers.  It is possible to have Asperger Syndrome and not have ADHD, but that is not the case for Pudding.  Okay.

There was more.

She also acquired a diagnosis for Developmental Coordination Disorder (also known as dyspraxia).  Her fine and gross motor delays going beyond what would be expected with an ASD.  Well, if you’re sure.

There was more.

One last diagnosis of a Sleep Disorder.  We’re done, right?  Right.

Well, she has to be monitored for non-verbal learning disorder, as she is skating close to the edge of picking up that diagnosis too as she gets older.  I’m only surprised we didn’t gain an anxiety diagnosis there too while they were handing them out so freely!  Buy one, get three free.  The deal of the day, if shopping for diagnoses.

The doctor strongly felt that each of these issues are profoundly affecting her ability to learn and benefit from the therapies and services she receives.  So we need to look at each diagnosis separately to see how it impacts her and what the best overall treatment will be.  We have a lot of recommendations for her program, so now my job is to put the program together for South Africa.  That is the very definition of easier said than done!

She left us with the wise words that just like the first time we met, and Pudding was still our girl- not the diagnosis- so she remains today.  Even if we’ve added a few more diagnoses to the mix.

That is my girl: always a little more than we’d bargained for.

Written by Spectrummy Mummy

May 12, 2011 at 7:18 am

My New Mantra

with 22 comments

Today is my 200th post, which I think allows me to call myself a prolific blogger, because I like using big words.

As you might gather from the opening, I’m in a much more upbeat mood.  Having got my fears off my chest in yesterday’s post, I proceeded through the appointment with stoic calm.  I tend to handle stressful situations pretty well, I’m not a bad person to have around in a crisis, or even after a crisis.  But there is probably nobody worse to be around before a seismic event.  Leading up to that point, I blow things out of proportion, I worry about the worst case scenario, I am doom and gloom.  So a simple appointment at the hospital causes momentary panic, and then I deal.  It may not be the best strategy for dealing with life’s twists and turns, but there you go.  Having called into question my ability to deal with Pudding’s needs, I was calm, rational and prepared by the time we got there.

Pudding woke up with a cold.  I’m not going to use that as an excuse for the results of her testing because:

  1. We did not accompany her for the testing, and  won’t find out for a few weeks how she performed, she could have done really well for all I know.
  2. There is always something.  If not a cold, then a bad night, or she was out-of-sync, or something would mean she wasn’t on top form.  Top form days are awesome, but they are rare.  Let us use this day as our baseline, however it turns out.
  3. The testing is not carried out to send me into a vortex of despair, much as I may have thought that in the wee hours of the morning.  It is to determine which interventions will be the most useful to her at this stage.  The vortex of despair is just an added bonus, for those who like to see me lose my composure.  I must admit, it is quite funny.
  4. It is the best we can do with what we have.  Really, I should have come to that reason first and stuck there.  I might just end my next 200 posts with that sentence.

As we were not, in any way, questioning the validity of her ASD diagnosis, we got to skip a lot of repeat testing, and just concentrate on her current performance.  Her part was over very quickly.  In fact, the psychologist commented on just how difficult it is to keep up with her, so quickly did she move through the tasks.  Yes, you don’t have to tell me that!

We’ll get all the results when we return in May, but as much as they mattered to me when I couldn’t bring myself to complete the forms, I honestly am not concerned now.  At the beginning of the meeting, the psychologist asked why we were there, and instantly I felt relieved.  Oh yes, the panic was for a reason.  I’d almost forgotten we were there for something!

I asked for their expert advice on preparing Pudding for the move to South Africa.  I told them that we’d found a great preschool program that I’m happy with, but asked what else we need to put in place to best facilitate her development.  We answered many questions about her strengths and weaknesses, and the good and bad parts about the services she is currently receiving.  I’m confident that they now have a pretty good idea about our girl and where she is now, and will help us to help her reach her full potential.

I’m optimistic about the move, and assured that we’ll be able to prepare her as best we can.  We do the best we can with what we have.  Today what we have looks like a whole lot more than yesterday.  We have 102 days to get it right, and every day I’m going to repeat my new mantra.  You can join in too.

Written by Spectrummy Mummy

April 22, 2011 at 7:00 am

The Package

with 17 comments

The Package of forms from the hospital is just as heavy as last time.  Its bulk doesn’t comfort me, though they are blank, I’m scared to complete them.  I quickly hide them in a drawer.  It loiters in the drawer, unopened, for three months.  I know it is there, but I will myself to ignore it.  Finally, one week before the appointment, I have to open it, can put it off no longer.  Lucky that I did, there are forms for her teacher to complete, and there is only one day remaining before Spring Break.  I quickly tuck the rest of them away.

We’ve completed these same forms before.  That time there was a sense of urgency.  In my desperation to understand, I pushed away the overwhelming thought of what my answers would mean, and just responded to the questions posed about my girl’s development.  Just questions, they don’t define her.  Then those forms were evaluated, and more evaluations took place, and a label came which still doesn’t define her, but altered the course of our lives nonetheless.  That label brought answers, and understanding.  It brought recommendations for therapies that we just couldn’t afford.

It also gave us a new starting point.  A ground zero from which to chart her progress.  And this is the part that scares me.   The first time around, we compared her development with her peers, now we compare her to her younger self.  Yes, there has been progress, but has there been 20 months of progress?  In our game of snakes and ladders, are we moving forward?  I can’t help but reflect that had we been able to follow their guidance, there would have been much more of that elusive progress.  The feeling as familiar as the package of forms: Guilt.

Guilt is debilitating.  It leaves me prone.  I must fight it, because she needs me to keep moving forward so that she can too.  We do the best that we can, with what we have.  That maxim motivates me.   My armor.  I size up my enemy again: Guilt.  Nothing compared to the opponents my girl faces every day.  The best that I can do right now, is simply to fill out a few forms.  It isn’t easy for me, but like my girl, I try my best.  Time to open that drawer.

I did open that drawer on Tuesday.  There was no filling out the forms though.  Every time my attention was elsewhere, a pair of supervillains intent on destroying the house, my patience, each other, the world took over.  Eventually when peace was restored with bedtime, I opened up the envelope again, and got to work.  I don’t remember what answers I gave the first time around, but I suspect many things remain the same.

But there are so many things those forms don’t measure.  A burgeoning sibling relationship, the ability to work out what she needs even when her system is threatened, the capacity to make friends, flexibility in the face of disappointment.  So much more than I’d have hoped for the last time.  I just need to remember that for today.  I’ve been trying since the early hours of the morning.  I have the same worry and guilt as ever, but now mixed with pride and hope.  The heady cocktail of a Spectrummy Mummy doing the best I can, with everything I have.  Just like any other day.

Written by Spectrummy Mummy

April 21, 2011 at 5:38 am

Paper Cuts (at Hopeful Parents)

with 6 comments

This essay was originally posted at Hopeful Parents.


Hopeful Parents

Some say the child’s diagnosis is like a stab to the parent’s heart.  A shock, a blow that stops the heart from pumping, the world from turning, life from living.

I’m not sure it was entirely like that for me.  If it was, the wound wasn’t mortal.  Rather it was closer to the cut of a surgeon’s knife.  I anticipated the diagnosis, and knew it was necessary, prepared for it.  It was the recovery that took a long time.

I’d wanted to stop the bleeding quickly, put a Band-Aid on it, and heal.  But you can’t rush grief, it takes its own time.  I needed the stitches that came with experience.  I needed the tender care of those who had gone before me, applying balm to the wound.  First I felt numb, then I was sore, but it got better every day.

I healed up.  I dutifully worked through all the stages.  I wasn’t in Denial for long, though you could say I’d been in denial all along.  I was Angry for quite some time.  I Bargained better than the canniest of salesmen.  There was the Depression.  Short-lived, but miserable depression, anemia from the blood loss.  And then Acceptance.  Text book.  Glorious, wonderful, acceptance.  All the while I’d known that our baby was no different, no diagnosis would change my feelings.  But I’d changed, my life was changed irrevocably.  I’d formed a scar.  That needed Acceptance.

Only the thing they never tell you about grief, is that it comes around again.  Not so bad.  Not bleeding so profusely.  More like little paper cuts.

The sting reminds you of the bigger pain, as though you were ever likely to forget. I’m cut when my daughter refuses to hug her father, and only my cuddles will do.  I smarted when she spurned my parent’s attentions when they came to visit.  The nick when my younger child surpasses her development, or an overseas school refuses to include her.

Just little griefs; they sting, but they aren’t fatal.  Paper cuts.

I can dress my own wounds, and even when I can’t, they heal up on their own.  Give her time, she’ll get there.  Bandage.  She has come so far.  Ointment.  She is amazing in her own way.  Balm.  The paper that cuts me is a masterpiece still being written.  Salve.

Acceptance isn’t just getting through Grief.  It is learning that I’ll go through many griefs, and just as many acceptances.  No use in denying it.  Acknowledging that I’ll smart through every one of those paper cuts.  It is okay to be angry about it.  I can even try to bargain that one day my skin will be thicker, eventually dulled to the pain.  I can get depressed about it, but sooner or later I’ll accept that they will come as part of parenting.

Love hurts.  Sometimes a lot, more often a little.  If I can recover from a stab wound, I can get through these too.  Love heals too.

After all, nobody ever bled to death from a paper cut.

Written by Spectrummy Mummy

March 19, 2011 at 6:21 am

Labels

with 4 comments

Funny that I’m following up a post on Thursday on how labels don’t matter with one saying they very much do.  I’m allowed to be contrary though, this is my blog, after all.

The proposed changes to the DSM-V are out and have already some heated debate.  You can go over here to check them out.

One of the proposed revisions is to eliminate PDD-NOS and Asperger’s Syndrome as separate diagnoses and put them under the umbrella term of Autistic Disorder.  This diagnosis is then sub-divided into 3 levels of severity.  I welcome this greatly.  I read the Level 1 category, and it is a perfect fit for Pudding, no ambiguity there.  Why would there be ambiguity, you may wonder?  Because Pudding was diagnosed the same month at two different places on the spectrum, that is why!

When I made the appointment with Dr.P, my husband’s employer helped to secure an urgent meeting with another specialist.  We saw her and she briefly observed Pudding and asked us some questions.  She felt that Pudding met the criteria for Asperger’s Syndrome, but urged us to go ahead with a multi-disciplinary evaluation with her team.  This took place over a month, using many assessments, and eventually she was confirmed with the AS diagnosis, together with mild anxiety.

In the meantime we had the evaluation with Dr.P, who felt that the PDD-NOS diagnosis was the more suitable.  That day Pudding was exceptionally non-communicative.  We later discovered she was running a fever, which probably explained it.  On subsequent visits, she has demonstrated her language capabilities to Dr. P.  It really doesn’t matter though, she does have a pragmatic language delay for which she needs speech therapy, her support needs remain the same.

I don’t use the PDD-NOS diagnosis to describe Pudding, because it is too vague and wishy-washy.  I’ve met children with PDD-NOS who present just like Pudding, and those who are much more like Kanner‘s definition of classic autism.  Most of the time I describe her as having an autism spectrum disorder.  I don’t feel that Pudding is significantly different to, or less autistic than a kid with a different diagnosis, but there are differences in the levels of severity and the amount of supports needed.  At the age of 2 when she was diagnosed, her language skills were much more in line with her neurotypical peers, at 4 not so much.  She may be more Autie than Aspie now.  She has an autistic disorder, just like the other kids in her class, but there are levels of severity from non-verbal with injurious behaviours, to much milder social skills problems.  These revisions take away the hierarchy of low and high-functioning, confirms that these are all the same disorder, and acknowledges the amounts of support required.  As an individual progresses and requires less support, there is potential to move across the levels of severity while still acknowledging that this is the same diagnosis.

The new revisions also includes specific reference to hyper- or hypo-reactivity to sensory input.  I’m sure I’m not the only parent who was never asked about their child’s sensory processing abilities until after they’d begun to seek a diagnosis.  When Pudding was a toddler she began to spin around and bounce up and down to get the input she needed, but she would say she was dancing.  No pediatrician ever asked me if my child liked to spin herself or objects excessively, or stare at lights and fans.  I believe that including questions about this during routing well child visits would mean less kids getting missed until later.

I find another useful addition is this:

Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers) [my emphasis]

One of the great misunderstandings about autism is that the individual is unable to form a connection with anybody else.  In our family unit, Pudding has very close and appropriate relationships with us all.  It is when interacting with unfamiliar or rarely seen people that she struggles.  Just because my daughter was hugging me and looking me in the eye when I raised my concerns to the pediatrician, does not mean she is without difficulties with other people.  It is nice to see this acknowledged and included in the diagnostic criteria.

My blogger friend Laura at Life in the House that Asperger Built is concerned that some of these proposed changes will make it more difficult for females to be diagnosed, but I don’t agree.  I think what we really need is more awareness amongst parents, pediatricians and educators that every individual with autism has a unique presentation, and it is important not to overlook any social communication difficulties or behaviors.  The sooner we can get individuals to the right diagnosis, the sooner we can get them the support they need.  We need to find our girls before they start “faking normal.”

I don’t think the word “aspie” is going to fall out of usage even though the diagnosis will be phased out.  It has entered our lexicon, and many individuals self-identify this way.  I’m much more likely to say Pudding is an Aspie rather than Autistic Disorder, level one, but I’m just as okay with “autie” too.

Are the changes perfect?  Not by a long shot.  But then you can’t possibly do full justice to something as complex as autism, or indeed any of the other psychiatric diagnoses covered in a few pages of the manual.  Our knowledge of the human brain is growing all the time, and yet without using a baseline, we might never agree on what symptoms constitute a diagnosis.  I know with my own two that children are hard to classify.  And yet right now, Cubby doesn’t fit the criteria for DSM-IV or DSM V, Pudding fits both.

Whatever the label we give to people on the autism spectrum at whatever point they come into contact with a diagnostician, let us hope that we see an end to some of the inequity of service provision.  Let us hope it makes it easier to get insurance companies to pay for proven therapies.  Let us hope that the struggles and successes, the differences of my girl and those like her are acknowledged and supported a little better, rather than being feared or dismissed.  We need a change and this is a start.

Written by Spectrummy Mummy

January 31, 2011 at 7:45 am