Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘diagnosis

Different

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Actor George Clooney - 66th Venice Internation...

Totally gratuitous Clooney Image via Wikipedia

On Tuesday we had the second part of Cubby’s evaluation by Dr. P. This was a 1.5 hour play session, and though he tried to fall asleep in the car on the way there, he perked up, and was on very good form for the duration of the appointment. Cubby was very comfortable, possibly because he’d been to her office previously with his sister, and definitely because we stayed in the room with him. As with Pudding, Dr. P will write a full report for us, but she shared her overall impressions with us on the day.

I’m actually still trying to process my feelings. I think it will take a few days for it to sink in. My friends and family were eager to know the results, so I shared them. I’ll share them with you too now, though please don’t ask me what I think, because I’m still working on that. He is a typically developing toddler, and she has no concerns whatsoever about his development. She said she wished she had filmed the evaluation, as he exemplified social referencing and natural and spontaneous interactions. She told us she frequently forgot his chronological age (just under 22 months) due to his advanced language skills and attempts at humour and charm to get what he wanted (clearly my boy is the next George Clooney).

We talked for some time about our many concerns. His sensory defensiveness, his anxiety with unfamiliar people and environments, and lack of flexibility. All things that had unnerved me because they presented very differently with his sister at that age. She genuinely seemed more social than he did, but of course, the quality of her social interactions was and remains, quite different. I can have small conversations with Cubby, he seeks me out for this purpose. He has anxiety caused by his sensory issues, or sensory issues caused by his anxiety; but when he is comfortable and regulated, he is very social as Dr. P saw. Yes, in this way he is different to his sister.

In so many other ways though, he is just the same. When friends and family wondered what the doctor had observed, this was my response:

Precocious, intelligent, engaging, sensitive, sometimes anxious, cheeky, charming, adorable. Like his sister, only WITHOUT the autism.

He has some differences with the way he senses and perceives the world, but they don’t make the same impact on his ability to communicate and connect that they do with Pudding. We always felt that getting the label for Pudding didn’t change her, it changed us, and the way we related to her. Likewise, not getting the diagnosis for Cubby won’t change things. He continues to need therapy and accommodations to feel comfortable and function at his best. In that way, labels aside, my children really aren’t so different.

Written by Spectrummy Mummy

January 27, 2011 at 7:25 am

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The Filing Cabinet

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When we first noticed signs of autism in Pudding, we panicked.  We were three weeks away from moving to an isolated Spanish-speaking country that offered very limited support to children with developmental delays.  I knew that we needed a diagnosis quickly, but these things don’t happen quickly.  Then we discovered a new Developmental Pediatrician had just joined another branch at our pediatric group practice.  She already had a waiting list of a few months.  I badgered the reception staff for her email address, explaining that had one of their pediatricians not been so dismissive of my concerns, I’d have more time to get Pudding thoroughly evaluated.  I wrote and begged Dr. P to see us.  She agreed the very next week.  Though Pudding was subsequently diagnosed through a multidisciplinary team at a hospital center, she was, and remains, our first point of call, and has gently guided us through the last year and a half.

I remember our first appointment with Dr. P.  She had a large filing cabinet that held a handful of files, but was mostly filled with toys and assessment tools.  She was the first professional who seemed to actually care about our child, and how we were doing as a family.  At each visit, I noticed a few more files in the cabinet.  Yet each time, she treated Pudding as an individual, the only one under her care.  She would email to check on her.   She took the time to ask me how I was doing.

When Pudding seemed unhappy and overloaded in her first school, she was the one we turned to to talk about the options, and what she felt would work best for Pudding.  I noticed the filing cabinet was full now.  The toys and assessment tools were spewing out into the consultation room.   So many more children now, just like Pudding.  So many families under the care of this treasure of a doctor.

Around the time Cubby was assessed by Early Intervention, I arranged an appointment for Cubby too.  Eight months was the waiting time.  And this time we waited.  In those eight months, he has continued to grow and develop.  While there are motor delays, sensory issues, and repetitive behaviors, I have also watched him grow into a talkative toddler.  I held onto the intake packet, wondering if I should fill out the forms, or call and cancel the appointment.  How do I reduce my son to a few pieces of paper, when he seems to change every day?  Does he really belong there?  He doesn’t have the communicative difficulties that his sister does.  Perhaps we should wait, give him the luxury of time that we didn’t have with Pudding.  Dr. P’s filing cabinet is so full, perhaps another child needs to be in there more than Cubby does.  I went forwards and backwards on this issue, until I realized that if I were to cancel, we’d wait at least another eight months.  In six months, we’ll have left the country.  While there are, I’m sure, perfectly good doctors where we’re heading, there won’t be Dr. P.

We met with her today, parents only, to discuss our concerns.  We were greeted like old friends.  We chatted about Pudding, and the family, and our impending move.  She agreed that Cubby’s anxiety, transition difficulties, motor delays and problems with modulation were problems that could lead to him becoming more withdrawn and isolated.  She asserted that she needed to take a look at him.  Next week she will assess him.  I find him impossible to classify, but I trust in her.  I don’t yet know if he is going to end up being another file in that overflowing cabinet.  But I do know that, like his sister and all the other kids in there, whatever happens he will be more than just another file to her.  Even if Dr. P needs to get another cabinet to hold all her charges, each one so much more than their paperwork could possibly describe.

Written by Spectrummy Mummy

January 20, 2011 at 6:59 am

Mr. Sucky and friends

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School dentist examining a school girl in the ...

Image via Wikipedia

And so we drove through Virginia, North and South Carolina, Georgia, and finally arrived in Florida.  What do we do on our first full day here?  No, not the beach.  Not a theme park.  Our first full day in Florida, and we go to the dentist.

We went to the dentist here last summer when we were on home leave, and it was a great experience.  I still have bad memories of going to the dentists as a child, so I wanted it to be different for my kids.  Of course, I am talking about time BD (before diagnosis).  Now that I’m familiar with the sensory issues and amazing memory that are components of Pudding’s variety of autism, I’m even more determined that her early experiences go well.  Last summer, she came out of the appointment with an A+ on her dental report card, a Dora toothbrush, and best of all, a smile on her face.

I’ve asked pediatricians, teachers, and mothers all around where we live for a good dentist recommendation, but nobody ever had a suggestion for us.  My friend Alysia wrote a post about her great experience, and I knew I had to make a return visit to the dentist part of our trip.  I called the office up, and explained about Pudding’s diagnosis, and her brother’s sensitivities, and asked if they could still help us.  The receptionist said the magic words:

We serve all kids of children here, and we’re very familiar with sensory issues.”

Oh yes, they’re worth driving through four states for an appointment.

I’d found a social story about going to the dentist, and we’d practised at home.  Pudding was a little nervous, but she really enjoyed helping the assistant.  She particularly liked placing Mr. Sucky in her mouth.  Her teeth are in great shape, and we made it through another visit with no tears- success!

Her brother wasn’t quite as enthralled with the whole experience, but we got some great tips from the dentist about how to approach cleaning the teeth of a toddler who is so sensitive.  He was fine once he was given a new car.

I can’t control every experience for my kids.  I know some will be good, some will be bad, and that is part of life.  They’re going to have to learn to cope without my protection.  But I can reduce their anxiety where I’m able to.  When I find people who understand,  who make kindness and patience the bedrock of their professionalism, I’m going to hang on to them.  I’m perfectly willing to travel through the US for such a positive experience, and I dare say if I can’t find another such gem wherever we move to next, we’ll be flying back to Florida again. 

Don’t worry though, dentist visits aren’t going to be the highlight of this trip!

Written by Spectrummy Mummy

November 29, 2010 at 12:37 pm

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

Making the call

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I finally made the call to Early Intervention, the second time around.  I’d been putting it off, telling myself it was too soon to tell.  Somehow though, those yellow flags are adding up, and I need to make the call before they turn red.  This time, actually making the call was easier.  I already had the number.  I already know the process.  I can use the right language.  The lady was lovely, assuring me it is never too early to call (it isn’t!) and that if Cubby doesn’t qualify now for services, we can follow-up again any time before he turns 3.  I was matter-of-fact.  Echolalia.  Good eye contact.  Following directions.  Hand-flapping.  Fan-staring.  Sound sensitivity.  Tactile sensory-seeking.  Spinning.  Bouncing.  Articulation.  Pragmatic language.  Sibling study.  I reduce my beautiful, blue-eyed charmer to these terms.  It is all that needs to be said.  I say it calmly.  She listens attentively, answers reassuringly.  I try not to look at him as I speak.  The whole conversation takes just a few minutes.

And when I get off the phone and I turn to him, that is when I let myself cry.  I don’t want to do it again.  What are the official statistics these days?  1 in 110?  1 in 70?  Not 2 in 2.  Not my girl and my boy.  Both of them.  I already feel that they don’t get what they need. It isn’t fair, but I can’t rage.  It could be so much worse, I know.  I’m being melodramatic.  I know it isn’t a diagnosis.  I know it is getting help.  Help that we need.  Help that might make a difference.  Help that we might not even qualify for.  It is just the first step, the first of many.  I path I’ve traveled down before.  This isn’t a disease, my kids aren’t broken.  Theirs is a peculiar mix of strengths and weakness, a mysterious pattern that is known to us.  It is familiar now, so it isn’t as scary.

He doesn’t notice that I’m crying.  He is playing with his new bus.  Appropriately.  Making the brrm-brrm noises as it passes over the carpet.  He looks just like any other toddler.  Am I projecting my fears onto him?  Could he just be imitating his sister?  Is it something I’m not doing right?  Is it something I’m doing wrong?  Just like the first time, I wonder if it is right to make the call.  And just like the first time, I feel like it is.  I don’t want to walk this path again, but that isn’t my call to make.

Written by Spectrummy Mummy

September 8, 2010 at 7:54 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.

Letter

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The hospital where Pudding was diagnosed recently sent out a request that parents whose children were diagnosed there write a letter to other parents of children who are just now going through the process.  I don’t know if they will get to use my letter, as we have to keep anonymous.  However, the internet has a magic way of getting a message where it is needed.  It did it for me a year ago, and now I want to pay it forward.  Here is my letter:

Read the rest of this entry »

Written by Spectrummy Mummy

July 28, 2010 at 7:27 am