Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘atypical

A Good Day

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On a good day, Cubby gets to wake up refreshed from his all-night slumber.  He isn’t pulled into consciousness by the clamour of his sister waking up.  On a good day he gets pulled into bed for cuddles with me and Daddy, who is not at work or getting ready for work.  On a good day, all his fingers are in tact, and not bleeding profusely.  Yesterday, then, was a good day.  I can’t remember the last time Cubby woke before Pudding.  If we needed the Early Intervention evaluation to take place on a good day, this was perfect.  My boy was at his very best.

His very best means that he will be very unhappy with strangers entering his home, but give him 20 minutes and he’ll be all smiles.  He’ll willingly perform the tasks required of him, but more importantly, keep trying at the ones he can’t do.  In that way you’ll get a very accurate assessment of what he can and can’t do.  I’d say that is pretty perfect for what you’d want from an evaluation.

As previously noted, Cubby is ahead with his language.  It is atypical though.  He labels things, including me.  His pattern of acquiring language is so startlingly similar to his sister’s that we feel we’re just watching the same process unravel.  There is one difference, however.  I sat in on most of  Pudding’s speech therapy sessions with her excellent therapists.  I acquired some of the tricks for getting kids to use their words, and he has the benefit of that.  His social communication is emerging.  He is not delayed or even atypical enough to warrant speech therapy services, but there are watchful eyes on him, and that soothes my mind.

The cognitive skills that were so problematic in the screening?  Not such a big deal today.  In fact, he is again ahead a few months developmentally.  On a good day, of course.

The services he will receive will be coming from an occupational therapist.  He does indeed have fine and gross motor skills delays.  He has low muscle tone, and some major problems with self-regulation, and some sensory issues.  They got to see that even on a good day.

I’m very, very pleased with the outcome.  I’m glad they got to see my boy at the peak of his potential.  I’m happy he is going to receive the services that he needs.  I was right to make the call.  But part of me is glad that on the day of his screening, he had a bad day, because I’m not sure we would have qualified based solely on today’s performance.  I’m astounded by the vast difference between a good day and a bad day.  I’m sorry to say that he has more bad days than good days.  Still, when we get the OT, and my boy gets what he needs, I know that we’ll start having more and more good days.  I can’t wait.

Written by Spectrummy Mummy

October 7, 2010 at 5:17 am

Echo, uh-oh

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Pudding chatters all day long. There are certain times, like going to the library, or when I’m putting her brother to bed, or in the early hours of the morning, when I wish she was quiet. I instantly regret such a thought, of course, because speech is such a gift and we’re incredibly lucky to have an abundance, rather than an absence of her language.

Like, oh, just about everything about Pudding, her language is atypical. This was the first thing I noticed in the symptoms that eventually led to her diagnosis. I noticed that while she spoke in long sentences, she couldn’t make conversation. And I noticed that she repeated. A lot. No, even more than that. She had echolalia. She still does, in fact, but it is slightly different in some ways. Echolalia is the repetition of another person’s speech. It can be immediate and delayed. All children go through a phase of echolalia, but verbal children with ASDs go through this period for much longer than children who are typically developing.

Uh-oh, what happened?” Once upon a time, someone (probably me) uttered those words upon seeing a mess, and Pudding’s brain recorded it for future use. Now any time there is a similar situation, this exact phrase is her way of calling attention to it. Her language is not yet flexible enough to tell me what happened spontaneously. Instead, we do a little dance where she asks the question, I repeat it back to her, and then she answers. If I’m patient and attentive, I coach her through the correct way of getting my attention and giving me the information. But because I know, I know, that when she utters that phrase it is because she has done something she knows she shouldn’t, and in my anger, my coaching slips away.

She has slightly modified this to, “What happened to me?” in order to relate that she has fallen down and hurt herself.  This seems to be the way she learns language; using the memorized phrase, then adapts it to her situation.  Doing this is called functional echolalia.  For a long time it formed the bulk of Pudding’s communication, and for an inflexible form of language, it works surprisingly well.  I learned what she was trying to convey, and if her language abilities had ended there, I’d still be grateful that we could have a back-and-forth exchange.

As she is so familiar with the question-answer format, this is her main way of gaining attention. It is predictable, and when your pragmatic skills are limited, predictable is safe. So if Pudding comes up to you and says: “What shape is that?”, she does not want you to tell her. She knew what a hexagon was before she was two, but this is the only way she knows to interact with you, and interaction is what she desperately seeks.  It is one of the things that makes us most hopeful about her future- she wants to be part of our world, as difficult as that might be.

Last year she had less spontaneous language use. If I asked her if she wanted an apple or an orange, she’d frequently respond with immediate echolalia: “Want a apple or orange“.  Other times she’d just repeat the last choice, then get mad if I offered her the orange instead of the apple.  Now she is able to make the correct choice, and even say “yes” which was a long time coming, though strangely enough, “no” was right on track.

More and more spontaneous language is emerging, but she still uses a lot of echolalia.  When she puts her own words together, it is like a tiny glimpse into the future.  Sometimes I get tricked, the way she recently used, “shall we leave?” to indicate she wanted to leave the mall, was also used to exit the park.  I’ve never heard her use “shall” in any other way, but she will, of course, as she assimilates the word into her vocabulary.

She still uses some delayed and non-functional echolalia, I think just because she likes the way the words sounds together, almost like a stim.  For instance, she likes to repeat the phrase “To the zoo“, but she seems to just like hearing it, she doesn’t have any communicative intent.  There are dozens of examples like this, but I don’t really see a correlation between anxiety and her use of them as has been suggested in some texts.  She just likes it, it feels good to her, so she continues to do it.  Spectrummy Daddy and his friends do this with lines from movies too, so it might be something that is here to stay.  It might even perform a social bonding function, assuming others share the same interests.

Many children with delayed echolalia quote lines from TV or movies, but Pudding sticks to other people’s words, and books.  She has entire books memorized, and she could deceive you into thinking she was reading the whole thing, she is fluent, and matches the picture up to the words.  In reality she can read a few words, but nothing like the amount she has stored in her tape recorder brain.  It is truly a marvel.  I’m addicted to everything that comes out of her mouth, created or repeated; except, of course: “Uh-oh, what happened?”,  that I could go without hearing for a few days!

Written by Spectrummy Mummy

September 1, 2010 at 7:42 am