Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Early Intervention

Pinteresting

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I think I joined Pinterest when it first started, then immediately decided that I didn’t have time for it.  Last week, I was drawn back in, though I can’t say I wasn’t warned about what would happen:

@spectrummymummy you have now completed the “time suck” trifecta (fb, twitter and Pinterest)

Yay, time suck trifecta!  Well, I’m still not working yet, so at least it is only my time I’m wasting.  

Like Facebook and Twitter, I restrict my time on there to when I’m not needed.  Usually for me that is when I’m waiting for the kids to go to sleep in the evening- the prefect time to get pinning.  If you are interested, you can find me here: http://pinterest.com/spectrummymummy/

Just another piece of the internets that I’ve sprayed on, like a tom cat.  Sorry.  

Still, it isn’t all a complete waste of time.  I found this pin that I adapted into a game for my kids.  And they played. Like, together.  Taking turns and everything.  It was living the dream.  The only reason I didn’t disturb them to take photos was because I knew that would turn into a nightmare.  

Mosey over to the original poster:  Juggling With Kids to see how she created this game using a car to “park” in the spaces labeled with the sight words he is learning for school.

Image

We made our parking lot (which in my case looked more like a ouija board) using just the alphabet, and then we played a variety of games, like phonics (which letter makes the “vuh” sound?), spelling, (how do you spell cat?), and sequencing (what comes before “T”?).

The alphabet is very familiar to both kids, but they don’t always apply their knowledge so well.  This game also had them practice their listening skills, and taking turns.  Pudding used a doll to go and jump on the letters, while Cubby parked his ice cream van.

We got to work on the -an and -at words that Pudding is learning in her speech therapy, and Cubby got to practice his articulation that he works on in his speech therapy.  I think the big factor in our success was each child having their own toy to play with- a great way of bringing special interests into learning.  It definitely helped my two impulsive children to focus on letting each other take a turn.

It could, of course, be adapted for any child, and a variety of skill levels.  Just off the top of my head, I’m thinking of a toy rocket that could fly to the planets, or a plane that flew to different countries.  You could use colors or stickers to create your board, or maybe even use some PECS images if you are using that method with your child.  And how about using a straw to blow a ping-pong or cotton wool ball on to the letter to get in a little oral-motor therapy?

You could do a much better version, I’m sure.  Now that I know my kids like playing, I might make a more interesting version one of these days.  This one I deliberately kept as simple as possible, as I didn’t want to waste time.  After all, I do enough of that on Pinterest!

Preschooler

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Just before Cubby started preschool, I mused about if we were ready for this next step.  Here is how it went…

The first day, he’d been as excited as can be.  He happily carried in his backpack, and ran to get to his class.  Pudding and I stayed with him for a few minutes as he discovered new toys.  Then he cried when we left.  And when I say, I mean CRY.  I could hear his screams as I put Pudding back in the car to get to her school. I collected him early, and he was still crying when I turned up.  He’d spent the whole morning in either the teacher’s or assistants’ arms. His dummy (pacifier) never left his mouth.  He didn’t speak to anyone.  He didn’t interact with anybody else.   He wouldn’t eat or drink.  He didn’t focus on a single thing apart from the gate, waiting for me to collect him. I felt awful.

On Tuesday, he woke up in a state.  He knew what was coming, and he didn’t want any part of it.  When we arrived at school, his teacher had to pry his arms away from around my neck.  I skulked away with the promise that I’d return in 2 hours.
The following day, he attached himself to a particular assistant.  As long as he was with her, he was okay.  He wasn’t crying as I collected him.
The day after, he cried as usual when we got to school, but he sobbed that he wanted his dummy and I left, still feeling guilty. When I collected him, he was happy.  He’d stayed by the assistant all day, and he’d made a racecar in baking.
Still crying on the fifth day, he entered the classroom and asked where his favourite assistant was.  I waited until noon to collect him.  It was circle time, and he was the only child not in the circle, sitting by himself on a bench.  He couldn’t wait to tell me about the book they’d read together.

Then came a busy weekend, complete with dislocated elbow, a friend’s birthday party at the fire station, and giant slide.

The next day was Monday again, and the tears were back.  But when I collected him he was playing in the ball pit near the other kids.

On Tuesday there were more tears.  But  when I collected him, he told me the name of the boy he was playing with.

Wednesday, there would have been no tears, but then I dropped his cup on his head as I got him out of the car, and it was just.too.much.  He needed the dummy and his assistant to get over it.  By the time I returned, he was eager to tell me about his painting.

Today.  No tears.  No dummy (though he did stash one in his pocket).  No guilt.  Just a preschooler going to preschool, and a Mummy finally convinced she is doing the right thing by her boy.

Written by Spectrummy Mummy

September 29, 2011 at 10:13 am

Ready or Not (at Hopeful Parents)

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Hopeful Parents

This was originally published at Hopeful Parents.  You can read the post here.

I was out of sight during a game of hide-and-seek, and Cubby couldn’t find me.  Just a few months ago, this entire scenario would have been impossible.  Before we started Early Intervention, I couldn’t leave Cubby.  Ever.  I couldn’t go into another room.  He could only sleep next to me.  I couldn’t use the bathroom alone or take a shower.  His occupational therapist began introducing games of hide-and-seek for the three of us at the local playground, and slowly, slowly, he got better.  He learned to trust her, and eventually learned to trust that I would come back.

Mummy, where are you?  I miss you!

There isn’t a day that goes by when I don’t marvel at this boy’s language skills.  His ease at expressing himself and his emotions, so strikingly different from his older sister.  I let myself exhale a little.  It won’t be so hard for this one.  He can communicate, he can tell someone else what is wrong.  He doesn’t rely on me to decode every situation, every adverse sensory reaction.

He made other kids of progress too under Early Intervention.  He strengthened his muscles, both fine and gross.  He can hold a crayon correctly, he can jump from one place to another.  He learned to tolerate being touched, and ask what was making the noise.

But there were some goals we didn’t achieve before we moved.  He still struggles with waiting and turn-taking.  He is still an anxious little boy whose attention span is very short.  Most of all, though, he is still a child that can’t always play well with others.  He gets too overwhelmed.  He prefers to sit on the sidelines, observing.  For all the great strides he has made, I still worry.  Of course I worry- I’m his mother, and he will always be my baby.

As his mother I can do so much for him.  I can give him a sensory diet, to lessen his need to spin himself in circles.  I can distract him when he repeats things over and over- echoing his sister’s echolalia.  I can explain things, prepare him, help him understand this at times confusing world.  But I can only do so much.  What I can’t do is be a typically developing peer and playmate.

So today he starts preschool.  He is excited.  He is ready, but I’m not.  I’m afraid that this sensitive little soul will become overwhelmed and will withdraw just as Pudding did when she started school.  Recently we’ve spent a lot of time together, just the two of us.  Over a cup or two of rooibos tea, we’ve talked about school, and how Mummy can’t stay, and the teacher and new friends will be there to play, until I collect him before lunch.  Every day he asks to go to school.  He is ready.  I can’t hide from it, not when he is seeking something more.

So I stepped out of my hiding place.

I miss you too!

I gave him a hug, and he giggled.  Ready or not, here we come.

Written by Spectrummy Mummy

September 19, 2011 at 10:52 am

Wordless Wednesday 24 Aug 11

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Two incredibly tall creatures size each other up.

All that early intervention paid off, and Cubby touches the giraffe!

Aah, spoke too soon!

Written by Spectrummy Mummy

August 24, 2011 at 2:20 am

Wordless Wednesday 22 Jun 11

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Cubby’s last ever session with his Early Intervention OT.

He has come such a long way.

Happy Wordless Wednesday everyone!

Written by Spectrummy Mummy

June 22, 2011 at 6:42 am

Echo Echolalia

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Pudding has a new script as we drive in the car.  She looks out of the window at the buildings.  When she sees a house, she repeats:

That’s a house, and you remember this house.

And then we pass another house, and she’ll say it again:

That’s a house, and you remember this house.

Every time we pass a house.  Every time.  Sometimes we pass buildings that aren’t houses, and she demands to know what they are.  It doesn’t matter if I’m driving in rush hour traffic with idiots on their phones who don’t look when they change lanes (calm down, Spectrummy Mummy); if we pass a building and she doesn’t know what it is, that must be rectified.  Luckily she has that awesome memory on her, and a near GPS-like mapping skill, so once she has been told it is a hotel, or a mall, and then checked on the veracity of that a subsequent time, she is cool.

That’s a house, and you remember this house.  That’s a house.  That’s a house.  That’s a hotel.  That’s a coffee shop.

As I imagine it, she is talking through adding it to her mental map.  Then each time, checking that map hasn’t changed, and adding a little more.  It is pretty cool that she finds ways to make her world more ordered, so I don’t get too irritated by it, even though we spent a lot of time working on my motor skills.

Until Cubby does it too.

At first he would just immediately repeat everything she said, to Pudding’s great delight.

That’s a house.  (That’s a house).  That’s a house, and you remember this house.  (That’s a house and you remember this house).

The two of them were greatly amused by this game of Driving Mama Crazy.  But then Cubby started doing it when Pudding wasn’t around too.  Using the exact same words as his sister.  Echolalia of echolalia.  I can generally distract him, but left to his own devices, he repeats the script at length throughout the journey.  He repeats at other times too, but not consistently.

Does he have echolalia?  Does his brain work in the same tape recorder way?  Cubby has advanced language skills for his age, but he doesn’t always use his words socially or flexibly.  Does echolalia fill a gap when he doesn’t have the skills to communicate effectively?  At times echolalia seems to perform the same function as it does for Pudding.

Or is is something else?  Is echolalia normal to him because that is what he has heard all his life from his big sister?  Is it reinforced by her laughter and encouragement?  If Pudding was no longer echolaic, would it die away with him too?

All these things pass through my mind whenever we’re in the car together.  Is history repeating itself, or is is just my boy repeating my girl’s words?  Echo echolalia.  And can I tell myself that he is merely copying all those spectrummy behaviors that we see in him now?  She spins in circles, flaps her hands, and has meltdowns, so why shouldn’t he?  But what about the spinning wheels, his difficulty with transitions, the way he gets overwhelmed when there are more than a couple of kids around?  These are things that Pudding doesn’t do.  It is so hard to tell what actions are *his* and what are a result of being a younger sibling in our home.

Certainly this afternoon I’ll be thinking about these things some more, as I drive my grey-area kid to his IEP eligibility meeting.  And yes, it is crazy that we’re going through this Incredibly Enervating Process again weeks before we move to another continent.  But if we’re going to have a repetition of what happened last time we moved, I’m going to be prepared for it.

 

Written by Spectrummy Mummy

June 9, 2011 at 7:23 am

Wordless Wednesday 11 May 11

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Funprint book + washable ink

Pudding provides the thumbprints

I add the details

And write the word next to it.

Pudding learns to spell the word.

We see if she can write the word the next time.

Look at all these lovely feelings!

Using Pudding’s love of art (and a visual/tactile/proprioceptive method) to help her to learn.

Happy Wordless Wednesday everybody!

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

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

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