A Phone Conversation

My hubby called me this morning for a quick update.  He put the phone on speaker and here is the conversation with Jman:

Me:  Hi buddy!
Jman:  Hi mom
Me:  How are you?
Jman:  Good!  It is almost Monday!
(Dan in background) : you mean Saturday.
Jman:  It is almost Saturday!
Me:  Yeah, I know!!  Are you going to have a good day today?
Jman:  Yup!  See you later mom!
Me:  Ok, bye.

This normal phone conversation brought to you by over 3000 hours of therapy and one awesome kid.

You know what autism gives you?  Perspective. On what is really important.  No matter what the step, what the milestone, I appreciate every single one.

Tataway!

A scene from our day:

J-man brings me his coat and thrusts it into my hands. Now, when J-man brings me his coat that generally means he is bored and wants to go somewhere. 

So I said,  "You want to go?"

He said, "Goooo.   Caar!"  He signed it, just to make sure I got it.

I said "Okay, we can go. Where?"

J-man remained silent as he put his coat on.  I told him to get his shoes and socks, which he did.  As I was putting them on I asked him again, "Where go?"

He just looked at me and smiled. 

"Go Ice Cream?"I said. (This is the usual place we go when we need to Go)

"Nooooo" said J-man.

"Go park?", I said. (Oh please oh please please, not the park.  It is 20 degrees outside.)

"Nooooo", he said again, emphatically, with a slightly annoyed look on his face.  Really, Mommy, the park?  It is 20 degrees outside.

And then it dawned on me. 

"Target?"  I said.

"Ar-get??  Arr-get!!", he crowed.

"You want Toys?" I asked.

"Oys Oys Oys!!!" he exclaimed, grinning ear to ear.  Bouncing up and down. Fully satisfied at his ability to make his wishes known.

And off we went to Target.  When we arrived and settled with cart in hand, I asked, "Where go?"

"Tataway", he pointed emphatically toward the general area of the Toy aisle.  We meandered 'tataway'.  I took a (purposeful) wrong turn.  He grabs my hand and points again, "Go tataway!!  Oys!!".

I may have lost my way a few more times (ahem), but we eventually made it to the Toy aisle.  J-man directs me from lane to lane, carefully examining the toys.    I said "Small toy buddy", hoping it means something to him because let's face it, I don't wanna spend $50 on the Imaginex Dragon Castle, even though I know he has eyed it before.  But lucky for Mommy's pocketbook, he was content with a Playmobile Knight. 

And this scene, dear readers, would have never ever ever happened a few months ago.

Every few months I have this uncanny ability to totally panic.  It occurs to me that we aren't doing enough, or the right things, or enough of the right things.  I make calls.  I peruse the Internet examining my options for therapies or new techniques or some other new information that might help.  I worry and sweat and get myself all twisted up. 

And then J-man sets me back on course.

"Tataway!"

EE Ru EEEee

Happy Halloween Everyone!!

Ok, the day after.  But I have to tell you all about our Halloween night. 

So, as noted in the previous post, J-man had a choice between being Superman or Spiderman.  Now these options were picked by me because a) they were easy, b) they were cute, and c) they were easy.  I knew that J-man didn't really get the concept of Halloween, so I figured he wouldn't care.

Oh silly Mommy, how wrong you are.

The day before Halloween, we made a trek to Target for Halloween candy...thus guaranteeing that it would only be in my house for 24 hours before the big event and decreasing the likelihood of it ending up on my thighs (I failed, by the way.).  Once there, J-man took charge, commanding me to go "Tat Way" until I wove my way to the costume area.  Amongst the sea of sadly picked-over costumes, J-man found his Holy Grail:

Dash from The Incredibles

Sucker!!!

So, we were set for the Big Event.  Our neighborhood is CRAZY for Trick-or-Treating.  Some family several blocks away runs a hayride through the neighborhood, bringing kids from one area to another.  There can be 10+ kids on a trailer and as they arrive at our circle, they swarm like angry bees, running from one house to the next.  The neighbors go crazy with the decorations, from cute to spooky.  It is a Big Event here. 

Frankly, I didn't know how this would go.  He woke up from a late nap in a foul mood, which didn't bode well for the festivities.  But we donned the Dash costume and headed out, fully expecting to do maybe three houses before he had enough.



Spooooooky

Oh silly Mommy...

He LOVED it.  The first house was a bit scary because he had no idea what was going on.  There were kids everywhere dressed in costumes and running around, and he was a little intimidated.  But he really caught on quickly to what to do:  Ring the doorbell, hold out your bucket, and say Trick-or-Treat. 

Or as J-man says it:  EEE Ru EEEeee

Which he DID!!  Over and over again!  We must have done 15+ houses before we called it a night.  J-man would have kept going too!  My hubby and I were very pleased, and very surprised.  But I shouldn't have been... 

J-man is going to show us all!

J-man's Fifty Dollars

J-man's level of "engagement", interactive play, social sounding and word attempts has really been on the rise. I mean, in a exciting, "I can't wait to see what he will do next" kind of way.  However, J-man is also starting to exhibit some "less that desirable" behaviors, including 'arguing' (no no no no), hitting, and some all out temper tantrums. In many respects, this is to be expected.  As children begin to develop communication skills, they begin testing limits and using that communication to try and get their way.  An up-tic in negative behaviors is actually a positive sign, but let's face it:  It must be nipped in the bud.

The Communicating Partners approach to dealing with this is probably a common one, but one worth mentioning here.  Basically, Dr MacDonald says that giving your child attention, interaction, and communication is like giving them a $50 bill.  So, if you want to increase the behavior, you give them all of those things.  If you want to decrease the behavior, you give them none of those things.  No negotiation, no "talking it through", no explanations, no arguing, no feeding into the drama.

And tonight this approach was put into practice.

J-man was taking a bath (he LOVES bath time) and was all prune-y, so I told him "time to get out".

"No no no no" he said (a response!!! heheheh)

"Yes, all done" I said, and I drained the water. He started pitching a fit, so I took him out and brought him into our bedroom. I calmed him down, but as I tried to get him dressed he lost it again, refusing to let me put his diaper on.  He yelled and screamed, hit out at me, kicked his legs, etc etc.

And here was my thought process: My goal is to get him dressed. His goal is to not get dressed AND to fight with me (get attention). Therefore, my NEW GOAL needs to be to not reinforce this behavior.

So I left the room and went into the hallway.

My hubby came upstairs to see what all the fuss was about and I told him not to go in yet. J-man was crying and he came running into the hall and took my hand to bring me back to the bedroom. I said "ok, diaper", and he said "no no no no". My husband then began negotiating with him (a No-No!!!) and J-man went back into temper tantrum mode. So I told my hubby "Let's go out" and we both (wordlessly) went back out into the hall.

J-man was ENRAGED that we left again. He cried and screamed for another minute, and then followed us into the hall, grabbed both our hands and pulled us back into the bedroom.

And willingly got dressed. Even helped! And was grinning and babbling by the end

What I learned:

1. Feeding into J-man's negative behaviors only increases the behavior (the $50). When Daddy came and gave him attention, he started up all over again. When we both denied him the attention, things changed quickly.

2. J-man WANTS to interact with us. He was sooo upset when we left, when he had no one to be with, even though he had 'gotten his way' to stay naked. It was more important to him to be with us than to get his way.

I am loving this.

The New Groove

Piaget refers to this phenomena as Disregulation leading to Regulation. 

I refer to it as J-man going from a complete, total, mind-blowing pain in the tuckus.... and then some neurons meeting some other neurons, making friends...... and then J-man suddenly has a jump in skills.

This happens every four to six months, probably related to growth spurts and the like.  But I always forget that he has a total decompensation in his tolerance for anything and his overall behavior right before he makes a jump in skills.  Until, of course, he makes the jump.  Then he mellows, starts doing stuff he has never done before (good stuff, too) and I go "ahh...DUH!".  Of course, by then I have aged another 5 years and added scores of gray hair to the noggin. 

Imitation has always been a bit of an Achillies heel for J-man.  He hasn't done it... or done it consistently. Since imitation is such an important social skill (it is the sincerest form of flattery after all), and fosters language and speech development, J-man not imitating is BAD. 

And now, suddenly, imitation explosion. 

He went crazy at speech today.  An imitation fiend!  Miss S was completely floored.  And he showed curiosity and interest in what she was doing, how she was doing it, and in copying her.  He tried more words and word combinations than I have ever heard him try to imitate.  Now, to be honest, this is where I think we are really seeing the apraxia kick in.  I mean, at times it is just a sound with some inflection thrown in.  Sometimes he just does the first part.  Sometimes he sounds like he has marbles in his mouth.  But hey, he is trying!

Imitation abounds at home, too. Let's take The Emperor's New Groove.  Hands down, it is the new favorite.  And he copies the movie scene for scene.  He knows the words... in his head at least.  He has never done this before.  NEVER.

So get this.  Here's the scene:  One of the main characters (Paucha) is returning home to see his family.  His wife and children are at the doorway, measuring the kids height on the door jam and marking it down.  As Paucha arrives, the kids run to him and hug him in greeting. 

Tonight, J-man grabs me, pulls me to the living room and makes me sit down next to the wall.  He hands me a crayon and stands next to the wall.  I catch on (since I have now seen the Emperor's New Groove about 1000 times) and mark the wall. 

But oh no, it doesn't stop there. 

He then runs away... about 6 feet.... turns around and runs back to me, throwing himself in my arms for a big hug. 

Seriously, we are re-enacting the reunion scene.  OVER AND OVER.

And we did it several times before I called my husband to come into the room "at the right moment".  So, after marking the wall, Daddy walks in and is delivered the Hug of the Century.  Like Daddy has been gone forever. 

And then Daddy promptly pushed out of the room so we could do it again.  And again.  And again.

All the while, he is engaged with us, interested in being with us, smiling, giggling, and laughing.

Makes all the butthead days worthwhile.

When Mommy Gets Choked Up

We are starting to work on improving J-man's interaction skills. 

As pretty much every parent in our position probably does, I am reading books.  Lots of books about building interaction, language delays, etc.  The current manual:  Play to Talk by James MacDonald and Pam Stoika.  I am only 60 pages in, but so far I can give it two big thumbs UP.  Without spending large amounts of time explaining the program, let me just say that right now the current take-home message I am getting is that I need to chill out and simplify simplify simplify. 

So that is what I did today.  Chilled out and simplified.

And we have had a brilliant day! I wish I could tell you all the ins and outs, but I can't articulate it.   Now, don't get me wrong:  J-man was as much of a butt head than he always is.  But he was more present.  I was more present.  The overall tone of interaction improved.  There was MORE.

For example, J-man was in the tub this evening, chattering away to himself in his Martian talk while I putzed around getting his jammies ready. I walked up the stairs and stopped a couple of steps away from the top, perched my face on the top stair and was watching him in the tub. No words, no mom-in-his-face, just simply present.  Then J-man looked up, caught me watching him, and calmly said " Hi Momma".

Allow me to repeat that.  He said "Hi Momma".

I was stunned. I said " Hi Jonathan".

He repeated "Hi Momma".

And he went back to playing.  Let me tell you, I can honestly say I have never heard him greet me like that. Genuine, real, not prompted. I can't help but get choked up about it.

Yep, two thumbs up Dr. MacDonald.

Two BIG Thumbs Up.

Celebrity Lullabies with Ricky Gervais

J-man has a renewed passion for Sesame Street.

And I have a new passion to get him to interact with me.

Enter Ricky Gervais singing "The N Song".



He LOVES it. And to be honest... me too.  I mean, come on!!! 

I will sing the chorus... yes, that chorus... as we both shake our heads.  Our primative head-banging.  J-man will grab my face and go nose to nose with me, wiggling his head and saying "na-na-na-na-na-na... goes".  He grins at me.  He giggles with me.  He squeals. 

Thank you Sesame Street.

Discoveries

Despite some of the frustrations, disappointments, and worries, there is something about being J-man's mom that is absolutely wonderful.  As his mom, I don't... I cannot.... ignore the small moments of wonder, or newness. Of discovery.  Those moments just appear like magic and they have such strange purpose and beauty. 

J-man learned to flush the toilet yesterday.  He tried to put the shampoo bottle down the toilet, but Daddy caught him... with this sly look on his face.

J-man learned to get in and out of the tub yesterday.  He crawled in and out, over and over.  He streaked through the house, his little bum wiggling wiggling wiggling as he was giggling giggling giggling. 

J-man did not want to put his jammie shirt on, so he took it off and (not knowing I was watching) hid it in my drawer.  When I questioned him as to the location of his shirt, he sneaked a look over at the drawer, grinned, and ran away.

And last night, as I sang "Twinkle Twinkle Little Star" while flickering the lights on and off, he raised his hands up and fluttered them like little stars and used his voice to "sing along".  For the first time.

Small moments that might get forgotten (or not even noticed) by others.

But not me.

A Little Curious

We have HBO.

I know, I know. No one needs HBO. Unless you are addicted to True Blood or The Pacific.

We got HBO when we moved because it came free as a part of the introductory cable package, and sometime this summer it might be time to let it go. But in the meantime it feeds my hubby's True Blood addiction.

Ok, so on HBO there is this show called "A Little Curious". Here is the description from the HBO website:

"A Little Curious" is a fast-paced mix of animation and live-action vignettes, focusing on three concepts to be treated in many different ways, exploring the different possible meanings of these concepts. For example, in one edition titled "Loud, Soft, Shake," the concept "soft" could mean a comfy blanket, a gentle whisper -- or an old sofie like "Doris the Door" fondly remembering her childhood on a stoop in Brooklyn. "A Little Curious" allows preschoolers to explore the humor and delight in all the meanings of these concepts, broadening their vocabulary and deepening their understanding of the world around them.

J-man loves this show. The music is jazzy, the action fun, lots of singing and general silliness. He loves it.

We have a few episodes recorded, and my hubby called me at work to tell me this story. Apparently, they were snuggling on the sofa watching one episode in which the concept word was "Tight". In one scene, Mop is tucking Bob the Ball, Little Cup, and the Shoe Girls into bed. ( I didn't say the show made sense ) As she is tucking them in, she tucks each one "tight tight tight". At the moment, J-man grabs my hubby's arm and wraps it around him, saying "tigh, tigh tigh".

Awwww.... cute right?

Oh it gets better. About an hour later, at bedtime, my hubby is laying the J-man down. J-man pulls on his hand to bring him down and says "tiss" (kiss). Daddy gives him his kiss. And then he pulls him down again and says "tigh, tigh, tigh".

He wanted him to tuck him in!!!!

Tight Tight Tight!!

I know!!!! To take that concept, keep it in his brain, say the words, and use it in context!!!! After only one viewing.

God, I just love him.

On Good Days and Square Pegs

Oh these days are good.

So stinking GOOOD!

J-man is really starting to blossom. He is working so hard to talk, imitating and mimicking sounds and words... or at least trying. Clearly (or not so clearly) his words don't usually sound like words. But oh, the effort! He has even started to try singing... usually to well-known songs, but still! It is a little startling to suddenly hear him trying to sign along, pieces of words in song. I have come to believe that his motor planning is a big issue. He HATES to "perform on command", even when it is words he clearly knows. But ahhh... the sweet sound of half formed words warms my heart.

He also has become more engaged in so many subtle ways. It is hard to describe, but it can be as simple as taking my hand just to hold it, or rubbing noses with me just for fun. These small pieces of him coming out and saying "hi" might seem silly, or unimportant, but for us they are huge.

A few weeks ago I attended a parent advocacy training seminar. It was two days, 8 hours a day, in hard chairs (oiy, my arse!) and covered a large number of general topics in special education law. It was interesting, if a little long, and I feel charged up to help other parents be able to represent their kids. Go Team!

Anyhow, while at this seminar I had a few interactions with mothers there that put me off-kilter. Now, don't get me wrong... they were all very lovely and very supportive. But I found myself on the receiving end of some 'unwanted' advice and some questionable observations that set me back a bit. Largely these 'insights' surrounded my apparent trip down the river of Denial regarding the J-man's diagnosis (or lack thereof) and how denying my boy the label of autism is somehow crippling him.... preventing him from getting the "true help" he really needs. I was counseled to "not be afraid" of the diagnosis and that I needed to rethink our position.

It took me several days to process these interactions. After some thought, I was pissed. I find nothing more galling than having someone judge my child based on nothing but their own biases. These people had never met my son. They certainly didn't understand why we have are doubts about where he fits. I am not entirely sure they understand the subtle differences that we are looking at when we look at him. And yet, somehow I am failing him?

And how am I failing him? Because I am not chelating him, or spending our savings on scads of special supplements, or on the GFCF diet (oh we tried that once... no difference)? Because we aren't in an ABA program? Are those the doors that would open? Because the way I see it, there is no evidence those costly, massively time consuming (and sometimes highly risky) therapies would work for him. For others, yes maybe. But what IS working is what we are doing right now... a highly supportive home and daycare environment, highly specialized speech therapy for apraxia, and us: loving him and responding to him. He is leading the way, and we are following.

.

Is it really that crazy to think something as simple as that is working? That voodoo isn't actually needed?

It is true, embracing "that label" can open doors, and for the kiddos that need those doors open it is a gift and a Godsend. However, "that label" comes with a price. Suddenly, the world views him through that lens. The school decides where "he fits". Administrators draw broad generalizations about what is "appropriate programing" for him. Individual teachers may decide what their expectations should be (or should NOT be) and woe to us to try and change that. So we are well aware that someday we may need to go down that road. Then it may work, it may fit. But right now, really, truly, we-aint-lying, it just doesn't fit. It doesn't work.

And so we are Square Pegs. We don't fit neatly into anyone's category. We don't embrace "alternative" therapies out of hand. I actually read empirical research. The Peer Reviewed kind. We are not interested in pushing a label, defining J-man at age three. And thus, we are cast out of many clubs.... the ultimate rebels. Is there no village for us?

But then, J-man has good days. He has GREAT days. So I will take it, and love it, and accept that sometimes you just have to blaze your own trails.

And nod and smile at unwanted (yet well-meaning) advice.

Slacker Blogger

I just realized it has been a bit since I blogged. In the spirit of feeling guilty, I thought I owed you a little somethin' somthin' to tide you over until I can really blog. So, here are a few cool updates.

1. J-man is using 3 word sentences. Now, before you go having a party and breaking out the Three-Buck Chuck, each and every word must be prompted and 50% of the time he has a hissy fit when we try to get him to do it. But we can get him to say "E-ye wan cone" (ice cream) with a bit of effort. And, I have managed to get him attempt a TON more words, with prompting. He is trying, even though it is hard... so props to him.

2. I think J-man might be able to read. Ok, so that might be going a bit far, but he has... on two separate occasions.... pointed to words and said them. On one occasion, he saw the word 'shoe" in big bold letters, said "sho", and ran and got his shoes. And then wanted to go outside. So, I'm not saying, I'm just saying...... weird things run amok.

3. I got a new car. That has nothing to do with the J-man, it just makes me happy.

So there, now you have something to chew on until I write something really inspiring.

Blogger's Block

Daddy and Boy

Whew.

Back from vacation for a few days, I have been meaning to write. And I just can't seem to gather my thoughts in any way that makes sense. So I guess I will just write a little update about our trip and try and come up with something cooler later.

Our trip to Arizona was... for the most part....lovely. The weather was freaky. When we arrived they had just had 3 days of rain, which apparently is freakish. After we arrived, it hailed. And was cold for Arizona.... 40's -50's. Then, it got nice, sunny, and in the upper 50's to low 60's. So that meant J-man could run run run. He was happy.

We saw the sun. He was happy.

He had his first ice cream cone. He was very happy.

Very very happy.

This was Daddy's cone for about 2 minutes.

All was well until the last day. Then the sinus infection... which had been brewing... hit him hard and fast. My once cheery, easygoing little man showed me the meaning of a complete meltdown. And lucky us, we were flying home.

Flying with a toddler with a sinus infection. Mommy was not happy.

So, overall, I give the vacation a "B". Illness and rainy weather aside, it was a good time.

Up High, Down Low

Hey there ladies

Tonight, the J-man and I attended a Family Fun Night for special needs kids at a local indoor park. Think McDonalds Playland without the french fries. J-man loves the place... and because all the families there were parents and children with special needs, it felt like a place we could be totally free. No one had any expectations, just complete open acceptance. How lovely for all these wonderful kids and their parents!

Anyhoo, at one point the J-man saw the candy machine and insistently signed "eat". I got him a few Skittles and we made our way to the seating area. He signed and said "candy" as he munched. One of the other parents seated next to us asked him his name. Of course, he didn't respond.

Then this man, in a friendly way, asked J-man to 'Give me five'.....

AND HE DID IT!

Jonathan high-fived a perfect stranger! And, to make it even better, he went on and did the "up high/down low" part. I didn't even know he KNEW that.

Isn't it just the little things ....?

Optimism & Hope

Some people might say daycare is a bad thing.

I say daycare has been Jonathan's lifesaver.

He loves it. LOVES it. He has evolved from this anxious, unsure child to this confident, excited, social boy. He walks in, goes to his locker and willingly takes off his coat and hat. Puts them away, by himself. Walks with me, hand in hand, to his room and knocks ever-so-gently on the door. We go in and he turns to me, gives me a hug and a kiss, and pushes me out while closing the door in my face. Yeah, mom... don't let the door hit you on the butt on the way out.

He joins in classroom activities willingly and joyfully. The other children in the room apparently love him. I am told that there are a few children who are particularly interested in him, will pull him to activities and try and engage him. The amount of things he has learned is utterly amazing. I believe that... for the J-man... being with peers who engage him, whom he can model after, learn from, and enjoy has made a huge difference.

His mouth is moving. And moving and moving. He is starting to imitate sounds...sounds I and hubby make, others make, even things on the TV. He is trying words. Mostly, he gets the first sound in the word, but he is making so many more attempts. It is encouraging. He still doesn't always try to use sounds or words to communicate his wants, needs or thoughts, but the fact we are hearing more noise out of him... aaaahhhhh, heaven.

I am not sure, but we might have had the best IEP meeting ever last month. Definitely, the bar was set very high for every subsequent meeting we have. We made the decision to continue to get the special education services at Jack & Jill Child Care instead of moving him into the district classroom, and it is the best decision we have made so far. The center had TWO staff in attendance at the meeting and they were completely willing to work with Jonathan on his goals. The district folks were wonderful, and we came up with a plan that I think truly addresses what needs to be the focus for Jonathan right now. I am just thrilled with the way things are going...

To add to it all, we are starting new speech therapy next week. We decided to go back to Associated Speech with Janet Jacobs, and they were willing to take us on. She is advocating a different approach with the J-man, and while I am not sure what that will look like, I am optimistic about what we might gain.

Next week will be a tremendous week for the J-man. In addition to starting his new speech therapy, he is also moving into the preschool room at Jack & Jill. With the big kids! I am nervous but extremely optimistic. I think he will love it. And I think that we will start to see even bigger and better things down the road.

Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence. -- Helen Keller

Driving Mr. Jonathan

There are lots of things to update: recent Word Watch activity, our IEP meeting last week, holiday plans, etc. However, I think I will just tell a little story.

Despite his relatively calm demeanor, the J-Man is a man of action. Clearly, he was meant for parents who are willing to run with the bulls and leap tall buildings with a single bound. Alas, he got us. Much like Tiger Woods, Jonathan likes variety. He likes new and exciting diversions. He is not a “stay at home and veg” kind of kid.

Now, any parent with a language-delayed child learns early on that in order to encourage communication you have to make the kid “work” for the good stuff. They want the cool new toy? Make them say “toy” (or some approximation thereof). A cookie? A drink? A Nintendo Wii? Make’m work for it! Motivation is the key… hookm’ with their heart’s desire and they will try to do the hard stuff for the highly sought reward.

And then … there is Jonathan.

Not much motivates Jonathan enough to really, really, REALLY work for it. He has to want it pretty darn bad. Unless whatever you are asking him for is easy to do, he is likely to move on then keep trying. The list is very short of things he will work for.

So whenever we get one, we pounce, regardless of the consequences.

And this is how we have ended up driving Mr. Jonathan around every night for his “Evening Constitutional”.

Here is how it starts:

Jonathan grabs my hand and pulls me to the stairs. He sits down (2nd stair only, thank you very much) and pulls me down to the floor to sit.

On his own he says, “Coooa” (Coat)

“You want your coat?” I ask.

“Coooooa.” He looks at me expectantly.

“Why?” I ask.

“Gooooo…. By-eeee!” He states impatiently. Emphatically.

And from this point I can elicit any number of other vocalizations. Where are your shoes? Shoo (with the sign) Where is your hat? Haaa (with the sign). Where are your socks? (just the sign for socks… oh well).

But... lest we wish to witness a meltdown… we must go out. Somewhere, anywhere. Preferably the gym playland, but Target will work. And since we are trying to encourage communication and vocalizations, we are giving in to his evening demands.

I don’t mind.

I mean, let’s face it. This is practically a conversation for the J-Man!

Rockabye

We have a fairly standard bedtime ritual in our house, one that is no doubt very similar to most households. After bath and teethbrushing, we get J-man a drink of milk, read stories in the rocking chair, turn out the light and rock him a little bit and then lay him down in bed. One of these days.... no doubt soon.... we will do away with our rocking time. But, for now, it is my favorite time of day.

Tonight, after the lights went out and we snuggled together in the rocking chair for a bit, J-man started wiggling and turning (my signal that it is time to lay him down in bed). As I picked him up and started to his bed, he said... clear as day... "Bye-ie".

He told me BYE!

It both thrilled me and sent a pang into my heart. But thrilled me more.

A Halloween Preview

I love fall. It is truly my favorite time of year. Alas, our early snowfall makes it seem like we are not likely to get a long, lovely turning of the leaves, picking of the pumpkins, and gentle cooling of the weather. Nonetheless, snow cannot take away one of my all-time favorite holidays: Halloween. Not a "Harvest Festival" either.

HALLOWEEN

Jonathan's first Halloween was only remarkable in how darn cute he was.

Last year, Jonathan begrudgingly let me put him in a costume, but truly hated every minute of it (if you can't tell).

This year, I was hoping he might have some inkling of a favorite character he might want to be. But alas, he is in the very infancy of his imagination, and does not express any favorites as of right now. Nevertheless, he has taken to wearing dress-up clothes at therapy and loves it. He enjoys putting them on and looking in the mirror. He puts on our shoes and tries to walk. So his 'pretending muscles' are starting to flex.

So I think, this Halloween, we are going to have some fun.

Currently, the costumes in the running are:

Sir Jonathan, Knight of the Dinner Table

OR

Jazzy J-Man, the Hip-Hop Fireman

(note the low-hanging pants)

Whatca think?

Just for Fun

Just a quickie fun post.

We had our first snowfall of the season. It was just a little dusting, gone before noon, but J-man insisted on going outside. Mind you, he has been in snow before, but I am not terribly sure he remembers it (he was still pretty little). So coat and hat on, I sent him out on the deck to check it out. He made it about 2 feet, past the grill, and promptly turned about and came inside. Apparently the cold isn't to his liking. I don't blame him.



I read a lot of blogs. Ok, maybe not A LOT, but a few. Most of them are written by parents of special needs kids. I find a lot of insight and inspiration from them. I wanted to share an entry made by one of these blogs (MOM- NOS). Whenever I read this entry it gives me hope not just for J-man, but for the world at large.

Check it out: The purplest.

A River in Egypt?

This has been a really weird week. A highly emotional week.

It is hard to get a pulse on what I mean. I am not sure how to articulate it. A bit of a roller coaster ride of emotions, both bad and good. But what I can say is that something seems to be changing around here, and whatever it is... it feels Big.

On the downside, we had a re-evaluation with Dr M at Children's Hospital. This evaluation consisted of a lot of questions regarding the J-man's development, where he is at, what he is and is not doing... and some basic observations of him playing in the room. Dr M completed both the Vineland and the CARS (standardized assessments) and from both these assessments and his 'clinical impression' he has diagnosed Jonathan with "mild autism and significant apraxia".

Of course, the "A" word makes me absolutely sick to my stomach. It is such a loaded word, filled with a lot of scary, negative unknowns and terrifing possiblities. While intellectually I know autism has a very broad spectrum and that many, many people have been diagnosed with the big "A" and either 'come out of it' or been so high functioning that (with intervention) were able to lead great lives... but as a parent, it is still a terrifing word to hear. And it isn't like I didn't know this word might be coming down the pike... I think we have been running from this word since day one.

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And what does our running from this word MEAN? Is it merely Denial... not wanting to accept what may very well be reality? Or is it something more? Why is it that a large part of my heart and mind that really feels.... believes.... that this is NOT autism? That this is something different, less easy to define, more specific to Jonathan. More based in language and motor planning, not socialization, not sensory. But on the other hand... is that just wishful thinking? Am I turning away from something true because I cannot look it in the eye? He has many of the symptoms... many, many 'red flags'. Is fighting that diagnosis about HIM or ME? If it is me... then I need to get over it. BUT... if it is HIM... then accepting the diagnosis is like giving up on his truth.

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To add to it all.... Jonathan has had an amazing week. NEVER has he been more verbal... both with signs and vocalizations. I cannot list the number of spontaneous new vocalizations he has had.... word approximations for things like bike, water, cookie, chip, passy, etc etc. He is imitating up a storm... he even copied me making a gobble-gobble turkey sound WITH ARM MOVEMENTS! Sounds that a truck makes... vrrrooom... beep beep noises. We have NEVER heard this from him. He also started preschool this week and did wonderfully. He even sat for circle time and clapped his hands! He has been so engaged, so involved, so here. These might seem like simple, silly milestones to you, but they are miracles for us. Nevertheless, he is still so far away from his peers.

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So how do I accept the big "A" with a week like this? Or rather, DO I accept it? Is my instinct to reject this diagnosis just denial or is it something more?

Right now, I am going with something MORE.

Of course, that might just be my denial talking.

As the Green Snot Flows...

What, Me Worry??

Jonathan is starting a preschool daycare this week.

Not the original fabulous place we had hoped for; alas, that place required that we also provide a PCA or Respite Care worker, and we could not afford that. So, we decided to look around some more and found our new preschool daycare: Jack and Jill Child Development Center. What won us over here? They incorporate Sign Language in ALL of their classes. That is a definite plus. Also, because it is in our school district, our Early Intervention teacher can work with him there. A BIG plus!

So why am I worried?

Probably because I am an overprotective, hyper-controlling, crazy mom?

We visited today for the first of two 'transition days'. The first day (today) we visit the room and let him play with the kids. Tomorrow (day two) I drop him off for an hour and see how it goes. On Thursday he has his first official day. I think my heart might stop.

Today went well. He had fun, and even sat down for circle time (albeit not in a circle... more in the middle of the circle). However, two key things made me a little nervous:

1) Snot. LOTS of snot. Clear snot, green snot, wet sloppy SNOT. Now, intellectually, I KNOW that he will get sick from all this exposure to other kids. This is just inevitable. And no doubt it will do wonders for his immune system. J-man has always been lucky to be very healthy. But soooo much snot..... what are we asking for?!?!?!

2) The Toys. And no, this isn't a tangent on the whole snot-germ relationship. The fact is, we are starting Jonathan out in the intermediate toddler room. We are doing this because the teacher-child ratio is lower, and they don't have expectations that he has a CLUE to what he is doing. They are there to teach circle time, basic routines, etc etc. And many of their kids are also new language learners. So we are hoping this room holds the best possible situation for his early socialization and language.

BUT... and I rarely get to say this.... he is WAY more advanced than their toys. He plays with legos and duplos, not big blocks. He does 24 piece interlocking puzzles, not wooden five piece non-interlocking puzzles. He plays with interlocking train sets, putting together the rails and train together. He plays on big kid slides and climbers, and will want to go on those instead of the 'baby area'.

So, I am extremely hopeful that he adjusts wonderfully, learns routines like a champ, and can 'graduate' to the preschool room before too long.

Where he belongs.