Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘delayed

Wish List

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I have a Wish List on Amazon.  It has 15 items on it, and honestly,  I could live without them all.  There are cookbooks of recipes my family can’t eat.  There are exercise videos I don’t have time to do.  There are photography hobbyist books I’ll never read, preferring to capture the moment rather than set up the perfect shot.  Cubby’s wish list has 85.  Pudding’s list features 310 items.  I know, it is outrageous.  Why does her list have so many more than his?  Because she has been on this planet longer, and I have been adding to it all this time.  Why so many things?  It is a glutton’s list.  Think of the greed of it when some children don’t have shelter, or food, or clean water, or good health.  We don’t need the things on there.  I don’t add to these lists thinking that somebody will get these things for them.  I see something I like and I put it on there.  It is like window shopping for geeks.  Windows shopping, snigger.

It is my fantasy.  My list of what I’d get if money or know object.  Or my list of what I’d like other people to get that is developmentally appropriate.  There are things big and small on that list, from $2 touchable bubbles (a sensory delight!) to a ridiculous $7000 mahogany rocking horse (hey, far be it from me to stop you spending your lottery winnings on my children).  Not pretty but breakable china tea sets that would be broken in minutes.  Not adorable, but incredibly hard to manipulate items for those with fine motor skills issues.  Amazon, oh so smart, knows me.  It knows that if like certain items I’ll also like these ones, and it greets me on my very own page with recommendations.  My own personal shopper, who knows my (Windows) shopping habits better than I know myself.  It tells me about products that benefit kids with special needs.  And I add, add, add it on and tell myself one day we’ll get it.  We’ll tell the grandparents to buy it.  Most of the stuff just stays there, of course.  Much as I might desire a Bodysox or an indoor swing to help with sensory integration, nobody who knows our kids can overcome that tendency to do whatever will put instant smiles on their faces.  Trucks and dolls it is, then.

I have another Wish List too.  On it is Cubby having the words to tell me he is hungry, and what he would like to eat.  It is Pudding being able to articulate why there are some nights she screams out (In terror?  In pain?) and why there are other night she sleeps soundly through, though we haven’t done anything different.  On it is Daddy coming back safely from his trip to Afghanistan.  On it is Pudding being able to hold a pen properly, and ride a tricycle.  On it is my kids making friends, or having a conversation together just because, telling jokes we all understand.  On it is getting an onward assignment that will be good for the entire family.  On it is Cubby being able to calm himself down when things don’t go his way.  On it is awareness and acceptance for everybody who is a little different.  On it is Pudding dealing with a change of plan calmly.  On it is Cubby drinking from a cup.  On it is my friend-I-haven’t-yet met getting well, winning her battle.  There is plenty more on that list, some big things, some small.

This list isn’t one of gluttony, though it sure might look it to those dealing with more than we are, and I know some of you are dealing with much, much more.   And to others it seems like the most basic of demands, coming in right after food, clean water and shelter.  Unlike the Amazon list though, I want everything on it, and I’ll do everything I can to get them.

One more thing: some of those wishes are going to be fulfilled.  I know, because some of them already have been.  Every time one of those wishes gets fulfilled, I add another one, letting my hopes move forward, one wish at a time.  We have already come so far, and we’re going to go much further.  I know it.

Amazon has nothing to do with it.

Welcome home Spectrummy Daddy, you were missed.

 

 

 

 

 

 

 

 

 

 

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What is on your wish list?

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Written by Spectrummy Mummy

October 14, 2010 at 7:30 am

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

Why?

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Pudding doesn’t ask ‘why?’ yet.  Nor does she appropriately answer when asked why.  For instance an exchange could be:

Pudding: I want a paintbrush.

Me: Why do you want a paintbrush?

Pudding: Yes, give me a paintbrush.

Me: Because you want to….

Pudding: Yes.  May I have paintbrush, please?

She is nothing if not polite, but no real answers here.  So many frustrations could be eased if we could just nail this concept.  She knows that she wants to paint, she knows that she needs a paintbrush to do so.  It is all almost there, just one tiny piece left out.  Another reason, I guess, why the symbol for autism is a puzzle piece.

The “wh” questions are generally difficult for kids with autism spectrum disorders.  Pronouns too, which I understand, because they are slippery little suckers that change around all the time depending on who is speaking.  Does ‘I’ mean me or you?  She gets around it by always using names, which is a smart solution for that issue, but won’t help with “wh” questions.  She actually uses “who?”, “what?”, and “where?” all the time, but “when?” and “why?” are just proving more problematic.  I think “when?” is because she has a murky concept of time.  When she doesn’t want to do something, she’ll frequently tell us she wants to do it “later, on Monday”, even if it is a Monday, for example.  We have included “wh” questions on her IEP, but “why?” doesn’t get included as many typically developing children don’t use it at this stage either, she is not considered delayed.

When we reach this point of being able to reason with her, so she can tell us why she needs something so badly, and I can explain why she can’t have something, it will make life so much easier.  We’ll be able to figure each other out, the start of understanding somebody else’s perspective, the seeds that one day might sprout into a Theory of Mind (which is a whole other post, trust me.  Or just google it if you’re curious).

Of course, “why?” will come one day.  When it does I’ll have to be ready with the answers.  I can do “why can’t I have a cookie?” and even try my hand at “why is the sky blue?”.  Sooner or later though, we’ll get the really tough ones: “why am I different?”, “why do I have Asperger’s?”, “why won’t they play with me?”.  I’m not even close to being able to answer, or at least give a satisfactory answer.  In the case of the last one, I’m not even ready to hear that being asked, but I know one day it will.

The other day I found this site which provides free resources for teaching these tricky concepts, and I made a book of why.  With lots of repetition, we’ll get there.  In a year she has come such a long way, I have no doubt we can do this too.

I may not have all the answers worked out, but I do have a response for when she asks me a “why” I can’t answer: go ask daddy.  Sometimes parenting and spectrummy parenting are the exact same thing, don’t ask me why!

Written by Spectrummy Mummy

August 12, 2010 at 6:55 am