OT Today

Eli’s ST couldn’t make it today but his OT came anyway. Before she started to work for EI she worked in the school system with autistic kids ages 3 and up. Last week (first time she met Eli) she said, “Let’s work with him for a month or two and then we can talk about getting an evaluation done to see IF he’s on the spectrum.” Today after working with him for a good hour, and really getting to work with him, she said, “Let’s get on the referral right now. It will be good to know where ON the spectrum he is and get him all the therapy he qualifies for.” She went on to say that studies are showing that catching it this early and starting intensive therapy NOW only has benefits.

Eli’s OT session went really well today though.  She brought a bag of really cool toys.  When she got here, he came to the door with me, we opened the door and when he saw her (she could have been anyone really) he threw himself on the floor like he does.  So she went into the living room with her bag-o-tricks and sat on the floor and took out a peg board toy.  Eli ran right to her when he saw her brightly colored pegs.

He LOVES toys and he LOVES brightly colors things and he LOVES little things he can hold in his hands and he LOVES building things .. and she had these things all in one toy!  He was so happy.  He focused really well and was very intent on building the pegs up up up.  Everything had to be just so.  He did so well stacking them up and keeping them up.  And if they came apart he was sure to put them right back to where they were. He was working on UP and DOWN with this activity.

G (I mistakenly thought that Eli’s OT’s name began with a J, it’s a G) is aware of Eli’s trouble transitioning from something he loves to something new and so she was great with him and really helped him transition well.  Next he played with a shape sorter that made this odd noise (ever play with one of those annoying noise sticks that you get an parades? you tip it and it makes this slide sound?) when you put the blocks in.  It only had three different shapes which was nice.  And it was round so it could also be rolled back and forth.  Eli was much more interested in sticking the shapes in, but he did roll it across the room a few times. He was working on IN and OUT with this activity.

Next he played with this scrunchy green plastic tube.  It could be made into a hat, or just a long tube and it scrunched up and pulled out.  He wasn’t as keen on this as he was the other toys, but after seeing G “yell” into the tube he decided to do that too and it was really cute. He was working on PUSH and PULL with this activity.  After a little while of this activity he decided he had enough of playing with G’s toys and he ran into his toy room to play with his toys.

We all moved into the toy room with him and as he played with his train table (best $40 ever!) G and I talked.  That’s when she laid it on me.  That’s when she said it’s very important to get on the referrals now and get him an official diagnosis so he can get some intensive therapy.  She said he will likely qualify for 25-30 hours of therapy a week outside of the EI stuff he already receives.  Seems like a lot of therapy.  But if it will help then I’m all for it.

I realize that I know nothing about autism.  I need to start to educate myself here.  We knew this was likely the case … but we were hoping it wasn’t actually the case.  I’ll probably try to find some general books about the spectrum and then when we have his official diagnosis I’ll find some more specific information.

I’m not okay with this right now.  I know that it is what it is, but I wish it wasn’t.

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Today has been a very repetitive motion kind of day.  Eli has spent much of the day rocking back in forth or bouncing up and down.  He’s always happy when he’s moving like this.  It seems to calm him.

Today isn’t a shoe day.  He hasn’t care one way or the other about his shoes.  It’s been a truck day.  He’s pretty consistently had a truck or train in his hands at all times today.  He’s even had one at his tray with him when he’s been eating.  He’s been fairly smiley today and very happy.

Today he’s been chanting a lot, he’s a big fan of the p sound these days.  He loves to shout the p sound over and over again and giggle.

We got a great find at a yard sale today!  Eli has always loved train tables anywhere he has played with one.  We know he’s a bit young for them, but watching him play and be so intent and concentrated and focused … we also knew that he could benefit a great deal from an imaginative toy that allows for lots of repetition.

We got it home and set it up and he is in love!  He has been very happily playing at his train table for a while now.

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New Foods!!

I am so excited!  Eli has been all about trying new foods today.  It started with my slice of cheesecake.  I was eating it and he came over and did his ummy-yummy-yummy noise and so I offered him a bite.  He backed away and shook his head no at first, but then he came over and took a bite.  He got very excited and had quite a few more bites.  Probably not the best food choice, but hey he’s so food limited that anything he’ll try is okay with me!

I was cutting fresh strawberries (see I can be healthy too!) as I was making dinner and he saw them.  He stood at my legs as I was cutting up the berries and he just kept looking at them.  So I offered him one, he took it and ran off.  Then I hear giggling and squeals and the ummy-yummy-yummy sound, so I quietly peek on him and he was LOVING that strawberry!  He ate one and then another!

After dinner I made some whipped cream for the dutch babies I’ll be making tomorrow.  Eli was being very clingy, so I just picked him up and we made it together.  He watched excitedly as we prepared it.  I offered him a bite to test it with me and he shook his head no at first but then grabbed my arm and wanted a bite.  He loved that too!

I was making a late dinner for me and D because D worked late tonight and part of dinner was jasmine rice.  I held Eli while I checked to see how done it was.  I put some on a spoon and blew it off (he helped blow, which is always adorable!) and then before I could get the spoon to my mouth he opened his mouth so wide and grabbed my arm.  He got the first bite to taste and he giggled and did his ummy-yummy-yummy thing.  He then proceeded to eat about a cup of rice!

We offer him new foods all the time.  We don’t push it at breakfast and we don’t usually go too far at lunch, but at dinner he is always offered something he doesn’t usually eat.  We give him lots of stuff that he loves, but I usually put say, a half of a green bean on his tray with his dinner.  Or I’ll put a spoonful of rice, or a bit of a strawberry, or a couple of bits of meat etc…  and mostly he ignores it, sometimes he throws it and sometimes he cries until I remove it from his sight.  He has never actually tried a new food I’ve put on his tray.  And yet today he was asking to try all sorts of foods he’s never really tried before!

I am one excited, happy and proud mama!!

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A Couple of Shoe Days

Yesterday was a shoe day.  Today is a shoe day.  Shoe days aren’t necessarily bad days.  The past couple of days he’s been yelling sounds that I don’t understand.  They appear to have meaning to him and sometimes he yells them at me and then seems very frustrated by the fact that his word did not get him what he was hoping it would get him.

He’s been making a lot of sounds actually.  It’s mostly babble I can’t understand but he’s been directing some of it at me, so it probably means something.  Sometimes I wish I could just understand him and be able to give him what he’s asking for.  I can’t imagine his level of frustration at times.

He hasn’t been answering to his name at all.  He doesn’t react to the word NO these past couple of days.  He won’t go get his favorite book, “Mr. Brown Can Moo, Can You?” when I ask.  He just doesn’t seem to react to anything I say at all.  Today has been one of those days where I’m talking to him, but I’m pretty sure none of it is sinking in.  And yet he’s been so “talkative” himself.  But it’s like he’s talking to himself mostly.

He’s been nodding his head a lot.  Just while playing, not as like an answer of yes or anything.  He’ll just be playing or walking and nod his head.  Everything that should be shut must be shut these past couple of days.. the fridge, cabinets, doors, etc etc.

He’s been dancing like a crazy man.  Any good beat has him dancing and wriggling and very happy.  He loves music so much.

He’s been more aggressive and violent the past couple of days.  He’s had some pretty good on the floor flailing fits.  He’s hit me and slammed his head into my face quite a bit. He’s been throwing most everything in a violent manner today.

He’s been driving his trucks around a lot too.  He just loves things with wheels and he can walk around for hours pushing one truck along.  It’s been the wooden ambulance today, yesterday it was a wooden truck.  In his toy room he’s been mostly interested in whipping things around and throwing everything in a less than playful way.

He’s been spending a lot of time the past couple of days sitting at the dog room, just sitting there, looking at the dogs.  He never seems bored or un-busy, even if he’s sitting still… he always seems content and like he has something going on.

He’s done well a lot of the time to play on his own and do his own thing.  He seems to prefer that on shoes days.  But he’s had his moments where he has come to me and he is upset and I just can’t seem to figure out what is wrong and what might fix it.

As I’m typing this, he was just sitting at the dogs and then he go up and banged (gently) his head into the door jam 3 times and then into a guitar case a couple of times.

The past two nights sleep have been … well both nights he’s gone down okay.  The night before last he went down late, he just wasn’t tired until close to midnight.  Through the night he needed some loving a couple of times and then he wasn’t up for the day until 9.  Last night he was exhausted and he went to bed early and easily around 8:45.  By 9 though he was upset and he wanted to nurse.  I nursed him and he went back to sleep.  He stayed asleep until around 3am when he wanted to nurse again.  Sometimes nursing him helps, sometimes it doesn’t.  Last night it helped, but I had to nurse him from 3am until he got up around 8am.

Jumping has brought him much joy the past couple of days, so there’s been a lot of time spent playing games jumping on the bed.

These days aren’t as difficult as some other days, but it’s because he’s so with drawn into himself that he doesn’t want me to play with him and he doesn’t like me to play with him.  Shoe days upset me more than some other days because he just seems so lost to me on these days.  I can’t connect with him like I can on other days.

And two shoe days in a row?  I’m not sure what that’s about.  But it has consistently been his right foot brown and orange sandal that must be on him at all times.  If I take it off he will get very upset and can become violent until I put it back on.

Oooh, he just took his shoe off himself and hopped into his Cozy Coupe.  Maybe today will end as something other than a shoe day!  I miss him on shoes days because he much prefers to do his own thing and not be bothered by me wanting to play with him.

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New Friend

So Eli met someone new today.  That’s almost always interesting.  I just never know how he’ll react.  Sometimes he just loves people.  Sometimes it’s totally opposite.  Sometimes he’s fairly indifferent.

When she got here, she came in and Eli was in the toy room playing.  When he noticed her and she said hi, he threw himself to the floor and flopped around.  Then he got up and threw some toys around.  Then he walked into the kitchen and hugged the basket of shoes we keep by the door.  She tried to talk to him and he hucked a shoe at her head.  So she took that to mean maybe she should back off and leave things on his terms.

We chatted in the living room while he played happily in the toy room.  He kept peeking up at her and he would smile then throw a toy.  Eventually he came out into the living room and came to me but acted like she wasn’t also there.  When she said hi he ran away.

After a bit we went into the toy room with him and sat on the floor with him and did some puzzles and played with his favorite shape sorter.  He interacted with me but not with her.  He pretty much acted like she wasn’t there.  But he wasn’t upset and he wasn’t anxious so I was stoked!

My friend asked me if he talks at all and I said he talks some, but usually only for me and D and the kids.  I took out my phone to show her the cutest video of him saying down every time I say up .. and he ran to her and grabbed her arm and held it steady so he could see the video too.  He sat there like that and watched the 18 second video about 15 times with her.

Then it was time for her to go.  He did wave bye and then came running into the kitchen when the door opened for her to leave and he waved his arms and yelled “die die” as she left.

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Just So

I’ve noticed recently (though looking back it’s been this way for a while) that there are many things that have to be just so:

The kitchen sink on the kitchen set can never be where it belongs.  It must be next to the kitchen set.  If he sees it in the kitchen set he goes over to it and whips it out and grunts, as if to say what the heck why does this keep ending up back here where it doesn’t belong?!

He has a pull toy bus that has a bead toy on top and he is not content unless the two are separate.  He can not seem to tolerate them as one two, but they are fine and he loves them as two toys.

There’s a drawer in the kitchen that if it isn’t out a certain amount he will stand there and yank it until it is out just as he wants it.  The rest of the drawers have to be fully closed or he will grunt and close them.

His potty chair has several pieces (not that he has ever used it as a potty!) and if it is put together and he notices that it is put together he takes it apart and flings the pieces, usually he flings them to certain places each piece.  Then he just walks away from the potty chair as if his work is done and all is well.

There are two cars that go with his little people garage toy, and two little people as well, he makes sure that those two cars and those two people are always with the garage and never anywhere else.

He has grown to be particular about his clothing these days too.  I don’t know if it’s the lack of onesies during these warmer months or what, but if his shirt is pulled up at all and his skin is exposed on his back, sides or tummy he is not impressed and immediately pulls his shirt down.  If I pick him up and my hands touch his skin under his shirt he swats at me and fixes his shirt.

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I am frustrated with how D’s mother acts about Eli.  She acts as if we are crazed people and don’t know what we are talking about.  We know our son.  And we know his ways.  And we know how he will react if he’s eating his lunch and she waltzes in and disturbs him.  He hardly eats as it is and if she comes in and gets in his face like she does, he not only stops eating but he cries and is then a mess for hours.

We’ve asked her to back off and not be all over him and we’ve explained why and that it makes him upset.  She doesn’t seem to care, but more than that, with what she says, she shows that she thinks we are crazy and that Eli is “fine” and “normal” and we are over reacting.

Every time she visits she does something to upset him.  And it’s usually something we’ve told her repeatedly not to do.  We explain to her that he doesn’t do well when people get in his face or when people hold him so he can’t escape or when people smush their mouth all over his.  We tell her she can’t just take his pencils from him and demand he play with Grammy.  These things upset his routine and they upset him and usually cause him to have a meltdown.  She sees the meltdowns and still it doesn’t sink in.

She always feels the need to point out something he’s doing and tell me, “See?  He’s normal.  Normal kids do that.”  Well I didn’t say he was a crazed space alien who walks only on his nose and doesn’t utter a word of English and barks like a dog while flapping like a chicken, did I?  I explain it over and over again and she just tells me, “Well maybe he’s tired when he does those weird things.”  Uh yeah cause all kids act autistic when they’re tired, that’s totally normal.

It isn’t like I want this for my son, I don’t.  I am frustrated that this is what it is for him.  I get so upset just thinking about how scary this world must seem to him sometimes.  I can’t even imagine being in his little shoes.

And I am pissed off that she can’t respect that he is what he is and stop tormenting him.

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