Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘therapy

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

Wordless Wednesday 11 May 11

with 13 comments

Funprint book + washable ink

Pudding provides the thumbprints

I add the details

And write the word next to it.

Pudding learns to spell the word.

We see if she can write the word the next time.

Look at all these lovely feelings!

Using Pudding’s love of art (and a visual/tactile/proprioceptive method) to help her to learn.

Happy Wordless Wednesday everybody!

Say It Ain’t So

with 10 comments

Pudding learns language in a very different way to most kids.  I know this, and have known it for some time.  Yet it still continues to surprise me.  I still find it difficult and frustrating to tailor my language to her needs.  For the most part, I’m successful in getting her attention before I speak, and keeping my sentences short and clear.  But I’ve also been doing a lot of something else, and it is damaging to her communication.  I’ve been correcting her, over-correcting her, really.  Now I’m paying the price for it.

Pudding has an Asperger’s diagnosis, which might fool you into thinking that she doesn’t have language delays.  In fact, she has very significant pragmatic language delays, like many other kids on the spectrum.  One of the most instantly noticeable of these is her difficulty with pronouns.  Initially, she would substitute the pronoun with names for extra clarification.

Pudding wants Mummy to get Pudding a drink.

Then we began speech therapy.  She understands pronouns.  She knows that I mean Mummy when I say “I/me/mine” and Pudding when I say “you/your/yours” and Cubby or Daddy when I say “he/him/his”.  She understands we/our/them/their without a problem.  But when it comes to generating the correct pronoun herself, she struggles.

She went from using her name to using the word “you.”

You want Mummy to take you out.

I would correct her:

Say: I want you to take me out.

She would repeat back, always emphasizing the pronoun just as I had.  Then over time, she began to correct herself:

You want Mummy to take you out.  Say I want Mummy to take me out.

Now that “say” is stuck there.  Wrapped up in almost every utterance.  I hate the effort that she puts into correcting herself, only for it to be wrong.  I really hate that it is my fault for over-correcting her.


I turned to the experts in Pudding’s life.  First, her teacher who approaches things from a behavioral standpoint.  She recommends ignoring the incorrect request, and only responding to correct language. It is what they do in her Verbal Behavior classroom.  It works there.

But I can’t.

I can’t turn away any communicative intent.  I can’t ignore her language because it isn’t fluent, not when I know how hard she tries.

So I tried her speech therapist.  Her method was to find an alternative way for using “say”.  She suggested “try” or “tell me.”

While that suits my instincts better, I have a feeling that before long they’ll also be incorporated into Pudding’s speech.  I mentioned this to her therapist, who acknowledged it is a very real possibility.  Then when we went to leave, she said goodbye, but Pudding was outside focusing on a flower, and didn’t hear her.  Before I could stop myself, I called to her: “Say goodbye.”

These language habits are tough once they are instilled, for both of us.  I’m going to do what I should have done in the first place- let Pudding be.  Let her learn our language immersion style, my teaching methods are clearly useless.  That is something I don’t mind saying.

Written by Spectrummy Mummy

March 22, 2011 at 2:58 pm

Full Pockets

with 16 comments

I unloaded my pockets. Trains for Cubby, princess stickers and candy reinforcers for Pudding, tissues for my streaming nose. Even with these things to keep them occupied, it wasn’t enough. Pudding and Cubby cavorted around the room, causing mayhem. They’re little kids, and they spend too much time in waiting rooms. Too many consultations, too much time driving to appointments, too much time in therapy, and too much time on the therapist’s homework. It isn’t fun any more, and 4 year-olds and almost 2 year-olds need fun. If they don’t find fun, they make it. In this instance by playing with the expensive spectacles on display, or tossing pamphlets in the air.

Finally we were called, and I quickly stuffed their things into my pockets. The optometrist repeated the same hand-eye coordination tests, and Pudding performed worse than last time, though we’d practiced the exercises almost every day. Damn. I watched him get on the floor to demonstrate some balance and coordination techniques. He is easily 80 years older than Pudding, but unlike her, he could coordinate his body. For all her energy, her hyperactivity, these basic tasks were beyond her. Damn.

We left the office with more homework, and instructions to call him when I wanted to schedule the next session. I retrieved my car keys from my backpack and put Cubby in his car seat. Pudding was fiddling with the car door, but I didn’t pay much heed. Better she was doing that than running around the car park. Needing both hands to fasten the buckles, I moved to put the keys in my pocket, but they were still full with the trains, stickers, and candy that had proven so ineffective earlier. Instead, I dropped them on my seat.

Pudding ran around and grabbed my backpack, ran off a distance, then abandoned it. A game. Because if they don’t find fun, they make it. She runs back, full of mirth. I go back to retrieve it, and hear her slam Cubby’s door closed. This is a game too. Playing Mummy. I go to open the door again, but it is locked. I go to open the driver’s door, and it doesn’t budge. Damn.

Cubby and my keys are locked in the car!

Now I panic. I try every door, but they are all locked. Pudding tries her door too, demanding that I open it. she hears the edge in my voice as I tell her we can’t get in, that the keys are locked inside. She isn’t playing now. She asks me to get the keys, and I shout back that I can’t. She screams back in response. Cubby, who had been oblivious, looks scared too.

Luckily, the backpack, containing my phone is outside of the car. It had fallen out of my pocket at the weekend, but somebody had found it. It was even fully charged. This wasn’t going to be so bad. I’d just call my husband, and he could get off the metro and take a taxi out to meet us. It was 5.20, he’d gone in early, so he should be on his way home already. If I spoke to him, I could have him get off the metro a stop early and he’d just be a 10 minute ride from us.

I called, but he didn’t pick up, so I left a voicemail. He is probably listening to his music. Not to worry, he’ll get the message soon. I turn back to the kids. Cubby is quiet, but looks worried. Pudding is still sobbing. I give her a hug, and apologize for shouting. I tell her we have to wait for Daddy to come with his keys, but it won’t be too long.

I want Mummy! Cubby has worked out that something is wrong. I try to reassure him that I’m right there. Pudding goes back to trying the door, and telling me she wants to get in her car seat. I want to get out! And so begins a round of one child begging to get into the car, and the other pleading to get out, and being unable to help either one.  I find the stickers in my pocket and hand them to Pudding.  They buy us a few minutes of calm.

After 20 minutes, I’m surprised not to have heard back from my husband. I begin calling repeatedly, it keeps going to voicemail. He probably had his earphones on and missed my other call, but if I keep trying him, I’ll reach him before he takes the bus.  Of course, she has to go potty, and I have to take her, even though that means leaving him alone locked in the car for a few minutes.  The moment he sees me return, his screaming commences.

I tried my husband again, and still no response. It was almost 6pm now, so even if he hadn’t checked his phone, he’d almost be home. I called our home number. No reply. I sang Old McDonald, and Wheels on the Bus. I tried again, and he answered! His phone battery was drained, so he had no idea what was going on, but promised to rescue us as soon as he could.

Around 20 minutes later, I saw a taxi stuck in traffic. It was too dark to see, but I knew it was him. As soon as he was close enough, he opened the doors with his remote, and I pulled open the door, to a very relieved Cubby. I smothered him in kisses. Instead of granting his wishes to come out, I reached into my pockets and handed him his beloved trains. It was a full hour after I’d first locked him in. A delighted Pudding had already opened her door, and I strapped her in. I finally got in, and started the car, ready for home as soon as Spectrummy Daddy joined us.


These things happen, but I can’t help but think that like my pockets, our schedule is just too full lately. I think we’ll revisit vision therapy at a later date, but it is just too much for right now.  These kids need less time stuck in the car, and a lot more fun, lest they make their own.

Written by Spectrummy Mummy

March 3, 2011 at 7:26 am

My Beady Eyes

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Things have been going well with Pudding.   She has come so far.  I was in a bubble of contentment about her progress.  The OT handed me her evaluation to review during the session, and I felt it go pop.

She is at the very bottom percentile for fine motor skills.  In one month’s time she will be 4 years old, and she has the grasping skills of a 13 month old baby.  Ouch.  It hurt.  It really hurt.  I’d been rejoicing about her developing fine motor skills.  I was comparing her to how she was a year ago, and with all the concentration and effort she’d put in she had made progress.  Huge progress, worth celebrating.  I hadn’t thought about how she’d compare with other kids.  I’d forgotten all about how typically developing kids just keep on typically developing.  It’s what they do.  And while they keep on typically developing, the gulf between those kids and Pudding gets bigger and bigger.  That little voice that I try not to pay attention was whispering, it doesn’t matter how hard she tries, she’ll never catch up.

I had my own private pity party right there in the occupational therapist’s office.  Cubby attended, but he didn’t really get involved.  There was a juice box and snacks, and that was all he was interested in.  I gave myself a few minutes, ate a chocolate bar, and then let it go.  Really, I let it go.  I can hardly believe it myself.  This isn’t last year, I can take a disappointment without hope dissolving away.  This is going to keep happening.  Every once in a while, I’m going to be reminded that the world doesn’t see Pudding through my eyes.  That when you compare her with others, she doesn’t do so well.  It is okay, really.  Because I look at her through my eyes, and I see a girl who works so hard, and masters tasks in spite of the challenges I can’t even begin to comprehend.  She beats the odds stacked against her.  I see qualities that can’t be measured on a scale.  Qualities that are rare and exquisite.  That is what I love about my girl, she is unique.  It isn’t fair on the other kids for me to compare her to them.

I thought back to that day when she threaded the beads, and I ruined them, and she threaded them again without losing her composure.  I have to keep my composure.  I need to just keep threading the beads because it needs to be done.  Just keep stringing, just keep stringing.  I can be distracted by how quickly other people make their jewelry, or I can just enjoy the beauty of my own.  I’m going to keep threading each bead with patience and love.  There is a serenity there.  Instead of looking around, I’m going to carry on concentrating on my unique treasure.

I’m just sorry that not everyone gets to see it through my eyes.

Written by Spectrummy Mummy

November 3, 2010 at 8:41 pm

The Name Game

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“What’s in a name? That which we call a rose
By any other name would smell as sweet.”

William Shakespeare, Romeo and Juliet (II, ii, 1-2)

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Written by Spectrummy Mummy

October 18, 2010 at 7:31 am

Getting Better

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The gatefold

Image via Wikipedia

“I’ve got to admit it’s getting better(Better)
A little better all the time (It can’t get no worse)
I have to admit it’s getting better (Better)
It’s getting better
Since you’ve been mine

Getting so much better all the time!”

The Beatles, “Getting Better”, Lennon/McCartney, Sgt. Pepper’s Lonely Hearts Club Band.  Parlophone 1967

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Written by Spectrummy Mummy

September 28, 2010 at 9:17 am

I want to tell you…

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“I want to tell you

my head is filled with things to say

When you’re here

all those words they seem to slip away”

Harrison, George.  “I Want to Tell You”.  Lyrics. The Beatles “Revolver” Capitol Records, 1966.

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Written by Spectrummy Mummy

July 29, 2010 at 6:55 am

Money, Money, Money.

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A new study shows that their is a greater prevalence of autism spectrum disorders amongst the children of the higher socioeconomic groups in the US. This isn’t the first time this connection has been made, and many commentators made the conclusion that the richer you are (at least in the US) the greater access to medical professionals who could make the diagnosis. The difference with this study, however, is that the findings were the same even amongst those undiagnosed. Essentially, autism is a rich person’s syndrome. My initial reaction was a snort of derision. Rich? I wish!

Then I thought about it more carefully. From even before our daughter was born, we have managed to live on one salary. When we first married I was unable to work due to my immigration status, and we got used to living on one income. When Pudding was born, I was able to choose to stay at home with her full-time. That is a choice many families can’t afford, and one I’m very grateful for.

Our fortunes changed with Pudding’s diagnosis. We are a Foreign Service family. Pudding and Cubby were born in a tiny European country. Weeks before we were supposed to move to Bolivia, we noticed differences with Pudding’s behaviour.  Differences that were eventually given the title of Asperger’s Syndrome. It wasn’t that she suddenly developed these changes, just that we recognized them for what they were. No Bolivia. Suddenly we were back living in the states and paying a mortgage and the high cost of rent of the DC metro area. We could just about manage though, and this time we had to. Two kids means two lots of day care. The only preschool in the vicinity that would provide appropriate care for her needs required full time attendance, at a significant cost.

Along with the diagnosis come recommended treatments. We were soon referred to therapists who combined RDI and Floortime therapies. The cost for the initial consultation? $2200. The price of the full evaluation to determine her specific needs? $8500. No, we didn’t have it. Nor the hundreds of dollars each month to continue the therapy. Insurance doesn’t cover these services. They do however pay for speech therapy and occupational therapy for developmentally delayed children. It has taken us a year to find pediatric occupational therapy covered by our insurance, and we’re still looking for speech therapists with availability. For as long as we could, we did both “out of network” which is medical insurance-speak for out of pocket. The going rate for these services in our area is $125 per 45 minute session. Yes, you have to be rich to afford these therapies.

So, what if you aren’t rich? In the US, each state will provide early intervention services for children up to 3 years of age at low cost, sometimes for free. When your child turns 3 years of age, they are entitled to a free and appropriate public education. The quality of this can vary a great deal depending on where you live. We chose to rent a home in the school district with the best reputation for autism services. Even so, Pudding was misplaced in a general special education setting with teachers with no formal training in autism spectrum disorders. We watched for a few months as she became more anxious and withdrawn, losing valuable skills. Finally she was moved to a preschool autism class where she is thriving. Many school districts don’t offer these kind of services, though. We are fortunate to have that choice. Choice seems to be the privilege of those who can afford it.

We watch Cubby closely for emerging signs of autism. We struggle to provide adequately for one child’s needs, but doing this twice over seems unthinkable. I read all I can about RDI and Floortime therapies and do my best to implement them at home, and hope, and hope.

We have one more choice. Something that day by day is getting to be less of a choice, and more of a necessity. We bid in the next few weeks, and hope to go back overseas.  Autism is a rich person’s syndrome in the US, and we can’t afford it anymore.  Hopefully we can go somewhere else where we can.  My heart goes out to all those whose financial situation leaves them with no choices.  Giving your children what they need for the best chance in life shouldn’t be the privilege of the rich.  A world where our children have the therapies to live happy and healthy, productive lives?  It’s a rich man’s world.

Written by Spectrummy Mummy

July 20, 2010 at 4:35 pm