Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘sibling study

Eye Tracking

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Yesterday was the second portion of Cubby’s 24 months data point in the sibling study.  We’ve been involved since Cubby was 10 months old.  Each time he is subjected to several hours of testing, and it is intense for both of us, but definitely for a good cause.  The work by the team at Kennedy Krieger is making huge strides in early detection of autism spectrum disorders.  Though exhausting to go through, it is exciting to be part of such worthwhile research that will ultimately benefit countless families.  There are many different developmental assessments.  Some of them are widely in use, such as the ADOS or Peabody tests, but others are still experimental.

This time Cubby took part in a fascinating new study assessing eye tracking in infants and toddlers at risk for autism.  He sat on a chair with me, with special cameras trained on his eyes which followed every movement as he watched a monitor.  To get him comfortable, we initially watched puppets and animals, then the testing began.  We were shown images of geometric shapes with slowly moving patterns, interspersed with clips of faces.  In addition, extra targets popped up to see how well the eyes would saccade between the images.  In between there was a video clip of a baby putting blocks in a container.

Cubby was very opinionated about what he saw, and felt the need to comment on everything.  I don’t know where he gets that from!  He was much more interested in the toys on the foreground of the video clip of the baby- trains and trucks.  When that part was over he demanded to see more!  He also was a bit creeped out by some of the faces he was shown.  He repeatedly announced that he didn’t like one man’s face in particular.  Oh yes, he was very vocal about that.

After the testing was complete, the research assistant came around to explain the results to us.  (Just initial findings, like all the testing it is reviewed and scrutinized at length).  Only at that point did I realize that the man’s face which Cubby found so objectionable bore a striking resemblance to that of the one conducting the experiment!  Oh dear.

I was shown the targets of Cubby’s eye gazes throughout the testing, so I could see which images he looked at the most.  He showed a strong preference for faces over the patterned shapes, and particularly the eyes and mouth areas.  A very positive result.  And of course, he had a strong preference for looking at the trains and trucks, which hardly surprises me at all (special interests!).  In spite of that, this particular experiment gives me no real concern.  So far Cubby has excellent eye contact, even with strangers.

Though it isn’t possible, I’d love to have seen what the results would have been for Pudding.  She is very interested in faces, choosing to draw them over and over, and look at photos on her iPad or in albums.  I wonder how well she’d have been able to shift from one image to another. This test may be able to find eye tracking difficulties in young infants.  The question now is if it is consistently reliable in detecting an issue in children who are subsequently diagnosed with an autism spectrum disorder.  This is where the siblings come in.    The study we are involved in recruits children under the age of 18 months, but there are others looking for pregnant women who already have a child with autism.  The earlier the detection, the earlier the intervention.

Ultimately, this could be an excellent non-invasive screening tool for the general population.  The difficulty with many current assessments is that there is a considerable amount of researcher bias.  Some children may be found to meet the criteria with one diagnostician, but not with another.  A screening tool that would measure in a more objective way would be incredibly useful.  I could see such apparatus in a pediatrician’s office, being used to screen every infant who comes into the clinic, deciding which ones require further assessment.

They just might want to find different faces for the more…selective participants.

Written by Spectrummy Mummy

April 8, 2011 at 7:01 am

Cubby’s Words

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One of my early posts was sharing some of Pudding’s words.  Even though he doesn’t have the difficulties with language that his sister does, I thought it was about time I did the same for her brother.  His quirky little personality is just starting to emerge.  Here are some of the gems we’ve had lately:

.

To me showing him what I thought was a picture of a truck in a book:

No, that’s not a truck.  It’s a backhoe. (To the mirth of nearby shoppers, who enjoy seeing a thirtysomething woman being smacked down by a toddler.)


At the playground, upon seeing the bichon frise dog that once bit me:

Mummy, I see a sheep!

Me: No, honey, it’s a dog.

[angrily, to me] No, it’s a sheep.

[To the dog] Baa baa.  Baa baa.  Sheep say baa.  Sheep: say baa!

Daddy and I were in the car discussing pantaloons, a costume used in the period drama, Downton Abbey.

I want pant balloons, please!

While holding his boy parts as I changed him:

This is a carrot. (I think he misheard “privates”.)

One morning, at the breakfast table:

F&%K!  F&%K!  F&%K!

Eventually:

I need a F&%K! (After much hyperventilating, realizing that he is requesting a fork for his waffle.  Phew.  Not that he’d have gotten that word from me!)

Do you have any kid gems you’d like to share?  It is going to be a long day, putting in the autism miles to get to the sibling study, so I could use a good laugh.

Written by Spectrummy Mummy

March 31, 2011 at 7:16 am

Take Two

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Keystone K-48 Bel Air Movie Camera

Image by Capt Kodak via Flickr

Picture the scene: I’ve just put Cubby down for a nap.  I have a moment of peace before Pudding returns home for the day from her preschool autism class.  A phone call disturbs me.  It is one of the researchers from the sibling study.

“I know you have concerns about your son’s development, so I wanted to give you a call before we sent the report.”

I sit down, and breathe in.  I am braced for the bad news.  I am ready this time.

“At this data point, your son does not meet the criteria for an autism spectrum disorder.”

My face is a picture of incredulity.  The camera zooms in to capture my expression.  I remember my lines.  I ask if they are sure, if they scored the ADOS.  I ask if that can really be true.

“Yes.  His scores don’t come close.”

I ask about his self-regulation, motor skills and sensory issues.  I remind them that he is only 19 months old, he could still regress.  Maybe his sister did just that.

“All a concern, but with his language, social reciprocity and joint attention being so good, we just don’t see autism.  We aren’t concerned.  Just keep doing what you’re doing.  We don’t want to see him for another six months.”

She hangs up the phone, and the camera is still fixed on my face.  I have read the script.  I know I should be showing relief, joy, perhaps jubilation.  I want to feel those things, but this is not that kind of movie, and before long, enter the villains, those merciless scene-stealers: Fear and Guilt.  I’m going to have to fight them.  I can handle myself, I do my own stunts.  There will be a montage of battles and victories.

Fear that this scene would repeat itself, just like when the pediatrician claimed my daughter was fine, not to worry.  The pain of finding out otherwise.  I defeat Fear by reminding herself that my daughter is fine, she just needs more support, and she gets it.

Guilt that we missed the signs in Pudding.   That she needed help before, but we didn’t see it.   I let her down.  How do I ever defeat this one?  I remind myself that I didn’t know the signs then.  As soon as I suspected something was amiss, I dealt with it, pursued it relentlessly.  The knowledge wasn’t written into the script until then.  If we’d known then what we know now, it would be different, but I can’t travel back in time.

Actually, I can.  That is the magic of movies.  I just haven’t wanted to until now.  Guilt has kept me from doing it.  I wasn’t ready before to watch home movies of Pudding, but this week I did.  I watched them for Cubby.  And I see it.  I see how rarely Pudding looks us in the eye.  I see how she is fixated on objects around her.  I hear the echolalia that I confused for speaking in sentences.  I see autism in all its technicolour glory.  I see it a little at 12 months, more at 18 months, and strikingly 24 months.  The signs are subtle, but they are there.  But I also saw two parents who are desperately trying to connect with their little girl.  Even when we didn’t know that we had to engage her, that is what we were trying to do.  With that I knock out Guilt.  We didn’t know, but we were still trying.  We were doing our best, with what little skills we had.  Improvising.

And here we are, yet another plot twist.  Perhaps there will be a flashback scene of Cubby staring at fans and lights, or flinching from somebody’s touch to illuminate my confusion.  Maybe the audience will just settle more comfortably in their seats, knowing there is a long time to go before the credits roll.  We really don’t know what is going to happen, whoever is directing this hasn’t shared their vision.  There is a lot of improvisation going on and at times, I wish I could shout “cut” and do a retake.  Whether he is on the spectrum or not, Cubby will make a most charming leading man.  Pudding?  She is the star.  The talented Diva who commands your attention.  I’ll settle for being the supporting actress.  I don’t think there will be an Oscar in it for me, but I enjoy being part of the production nonetheless.

Written by Spectrummy Mummy

November 22, 2010 at 6:40 am

Hug

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Cubby does not like to be touched.

That isn’t really true, because he is a cuddly little guy with me, and with daddy too. He needs physical contact to get to sleep, but wants lots of hugs and cuddles throughout the day too.
Cubby does not like to be touched unless it is on his terms.

Much more accurate.

Pudding likes to touch.  She is affectionate, perhaps over-eager in her affections, and is definitely a hugger.  We’ve already begun the process of explaining who you can and can’t hug, but it isn’t that easy.  Pudding wants to hug her brother, and because he reacts so badly to those hugs, we’ve had to ask her stop.  After some time, she has accepted that Cubby does not want to be hugged.  Instead she kisses him on his head where he feels less sensitive.  Success.

Occasionally I’m a little sad at the sight of Pudding stretching out her arms to embrace him, then remembering and dropping them.  Sometimes she’ll try to join in on a hug and gets upset when I turn her away.  I hate this, but we all have to learn to respect Cubby’s sensitivity.  The lesson is just harder for her.

Yesterday, when we had our second round of this session of the sibling study, I mentioned to the examiner that Cubby does not like to be touched.  All of the session is filmed, and many segments require him to be seated at the table.  Every time she strapped him in that chair, he flinched at the touch.  Ultimately she suggested we terminate the session, and return another time, but I declined that option.  For one thing, I know he’ll have the same reaction next time.  For another, a return trip of almost 4 hours plus testing time is just too much on top of the various therapies and other commitments we have.  We pushed through, culminating with the blood draw for the neurobiological portion of the testing.  This went really badly, the phlebotomist missed the vein in the first attempt, he resented being held down, and he couldn’t stand the feel of the dressings on his little arms.  He was distraught, and carried on screaming until he fell asleep in the car, exhausted.

We arrived home just before Pudding returned from school.  I collected her from the bus, and she was excited to see daddy already in the house.  Daddy asked her for a hug, and she bounded over to him.  Cubby watched the whole thing, then looked at his sister and said, “hug.”

Of course, we had to coax her into doing something she has learned not to do, but the two of them hugged.  They both enjoyed it.  I’m hoping this is the first of many.

Written by Spectrummy Mummy

November 12, 2010 at 12:30 am

Autism Miles

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A Gif Animation of a Speedometer.

Image via Wikipedia

Here is my week in Autism Miles:

Monday Collected Pudding from school and took her to speech therapy and then home.  32 miles.

Tuesday Trip to expensive organic grocery store for GFCF bread and yoghurt.  4 miles.

Wednesday Occupational Therapist office accepted by our insurance round trip.  42 miles.

Thursday Sibling Study round trip.  In morning rush hour traffic with a hurty back.  Yuck.  110 miles.

Friday Pudding’s field trip.  19 miles.

Saturday Dropping off Pudding at S.M.I.L.E. and collecting her.  61 miles

Sunday TBD, potential day trip to Philly.

______________________________

At least 268 miles this week in the name of autism.  I was thinking about this as I drove to and from Cubby’s sibling study.  I spend more time on the road than your average trucker.  One bonus though, it appears that Cubby’s “special interest” is trucks, so he is quite content being driven around for the most part.

___________________________

Wouldn’t it be nice if I could accrue points with these miles?

100 miles = A brother/sister play time that doesn’t end in someone screaming.

200 miles = Good therapy session.

500 miles = A day without meltdowns.

1000 miles = Spontaneous back-and-forth conversation for more than a minute.

5000 miles = A week with no nagging verbal prompting.

10000 miles = A chauffeur for therapy sessions.

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Written by Spectrummy Mummy

October 22, 2010 at 6:57 am

The Good, the Bad, and the Ugly

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Yesterday.  Wow!  I wouldn’t like to do another of those any time soon.  I’m still exhausted, and feeling a little sick.  Forgive me if this isn’t the most peppy of posts today.

Yesterday morning was Cubby’s screening by Early Intervention.  I was worried I’d called too early.  He has a lot of language, but there is something a little off about it.  That was my main concern.  During his last assessment at Kennedy Kreiger, he showed some atypical and repetitive speech patterns that gave the researchers cause for concern about his social communication.  He passed the EI screening for language effortlessly.  There is such a broad range of abilities at this age.  They moved on to screening other areas.  No problems until we got to problem solving.  He failed both tests, and launched straight into a tantrum when he couldn’t do what was necessary.  It is pretty typical behaviour for him, but I just hadn’t perceived a problem in that area.

The good news then, is that he will now go ahead to the eligibility panel and probably to a full evaluation.

The bad news is that there could be a cognitive delay, or at least motor-planning difficulties.

The ugly was when I had to go immediately to collect Pudding from school.  Her teacher, Ms. S., greeted me, told me about Pudding’s day, then asked how Cubby was doing.  She was greeted with the ugly cry from me.  A couple of quick hugs, some consoling words, and we were on our way once again to Pudding’s speech therapy.


No premanent damage- he'll still play the piano, or guitar, or drums...

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Written by Spectrummy Mummy

September 14, 2010 at 10:13 am

Cubbyhole

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Now, some of you may have noticed that there is another little person in my life who doesn’t get as much of a mention as his big sister. There is a Cubby-sized hole in this blog. It isn’t right. He deserves his own write-up.

I’ve been putting off talking about him, because I don’t exactly know what to say. Every time I write a post on WordPress, there is a place for me to ‘tag’ my posts and this puts them in a category. I don’t know how I’d tag my boy, and I don’t know what category I’d put him in. I used to think Aspergers was a binary thing, you have it or you don’t, but Cubby is pint-sized proof that this isn’t the case.

When Pudding was diagnosed, Cubby was only five months old. At the time I was angry with myself (and the world) that I’d missed things in Pudding that were suddenly so obvious. I was determined not to miss anything second time around. But Cubby, like his big sister, hit all the developmental milestones. Just like her, he was born liking fans and lights, and tactile sensory-seeking. Just like her, he developed separation anxiety at a very early age, and seemed over-attached to me. And just like her, when I mentioned these things to the doctors, they told me this was normal.

Even Dr. P, Pudding’s excellent, perceptive, developmental pediatrician has yet to see the signs in him, but referred us to a sibling study to monitor his development.

We’ve had two sessions of the sibling study at the Kennedy Kreiger Institute. Each one is a grueling seven hour assessment, and both times we’ve had to split the session over two visits. The first evaluation found him to be developmentally on target, but with joint attention problems. Joint attention is where a caregiver shows something to the child, and he or she acknowledges this and responds accordingly. Joint attention deficits are considered to be the first indicator of autism. Cubby had some joint attention, but hadn’t mastered it. We went to work on this, and by the time his second evaluation had taken place, he had age appropriate joint attention.

We aren’t allowed to breathe a sigh of relief though, because this time around they found problems with his social communication, something that had been one of his strengths at the first visit. At age 16 months he knows and uses many words, he is developmentally ahead, even putting words together, but there is something about his use of words that is slightly off, or atypical, to use the word which frequently describes our children.  I’m working on his pragmatic skills, and teaching him some basic sign language, which enables both sides of the brain to be engaged in communication.  Perhaps we can get him back on track with this too.  Or maybe there will inevitably be another sign emerge, and then another.

Only time will tell.

For the moment, he makes great eye contact, shares his interests and imitates in play. Our local Early Intervention services will only provide therapy if he has a significant developmental delay, or has a formal diagnosis. Saying that I think he could be spectrummy just isn’t going to do it!

The A-word isn’t so scary the second time around, but that doesn’t stop me worrying about my baby boy. This time we know what challenges may be ahead, and how hard it is going to be to meet them, with our increasingly limited resources.

In January we’ve got our appointments for his assessments, perhaps by then things will be more evident. Until then, he just doesn’t fit into a cubbyhole, he can’t be categorized. He just is who he is, and we love him for it.