Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘diagnosis

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

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