Easter Basket!

As I was cleaning out Neil's room, purging some old toys and clothes that he's outgrown, I came across two Easter baskets he's used in the past. One shaped like Lightening McQueen, one shaped like a Firetruck. I'm sort of a traditionalist here, so I am not a big fan of the plush commercial Easter basket.So that spurred me to feature my mother in law for this week's Team Tuesday.WebmavenNJ, aka my Mother in Law, Pola. It occurred to me that I should ask her to make Neil an Easter Basket, after all - she's a basket maker. Don't know why this never occurred to me, I guess because I have different idea's of Easter baskets vs functional or decoration baskets so it just never came to mind. Between my mother in law and her best friend (and basket mentor) Mary from Pineland's Folk Music & Basketry Center I have been conditioned to appreciate and recognize quality handmade baskets. They've made me quite the basket snob!
So, within a few days I asked Pola to make one, and she came up with the design off the cuff & created it! She's still gotta sign it, but it's all done! It's great - Neil loves it! Extra strong bottom, to hold all that candy :). I asked for a yellow accent color on it. Before the bunny hops along and fills it up, it's going to sit on the center of the table as a centerpiece. I have an idea for some eggs I want to fill it with! I'm so excited to have this heirloom Easter basket for Neil. Handmade baskets last forever (We just bought one from the 1920's!) and Neil can pass this basket down to his children some day. Pola is taking custom orders for Easter Baskets if you are interested. The price is $75, which is not much for an heirloom quality basket like this. It's got a double bottom for extra sturdiness, and the handle is extra strong too. The basket is about 6" deep, 13" diameter, and from bottom to the tip of the handle it's roughly 16" tall. Act fast if you would like a custom Easter basket, because Easter is just around the corner! You can contact Pola through her etsy shop, or her facebook fan page.Of course I had to put our new little baby Gypsy Rose into the basket for the photo op! She's just too cute, and while I do not condone getting bunnies as Easter presents, she just happened to arrive around Easter time for us. She sure is a cutie pie!

This post is part of the EtsyNJ Team Tuesday Blog Hop! Visit the EtsyNJ Blog!
Check out my other team members that are also blogging about New Jersey Artists today!

Apple Juice

In the eyes of Neil, my 3 year old, every drinkable liquid is apple juice, or, as he says "apbull jews"

This AM I was doing a few chores around the house and I have the ultimate lazy method of filling the dogs dish. It's directly behind the sink on the kitchen island, so, I can spin the faucet around, put it on a slow stream and it fills the bowl up. It's a bonus because usually Fiona, our dog, loves to drink the stream of water so she usually comes and drinks as it's filling.

Being the ultimate multi-tasker, I was also swiffering the other end of the kitchen where Fiona had made a mess (gotta love little dogs). So I finish up, get her some dog food and I called her "Fionnnnaaaaa" and Neil, who is always only 2 steps behind me yells "Nona.... apbull jews!". He was calling her to come get her apple juice haha.

I thought it was too funny that he thinks that not only is whatever I'm drinking "apple juice" but - apparently the dog drinks it as well. Just a little glimpse of perspective that reminds me how little he really is, and how adorable that is!


P.S. I finally cut his hair yesterday! He can see again! See the Before & After shot of the little guy!

Neil's Favorite Babies

Anyone who has seen Neil recently, knows that he's always got his three little comrades with him - Chaucer, Elephant, and little old Ming Ming. Sometimes he's got a little blanket with him too... they've all become quite a part of him! One night he brought me the camera, he loves getting his pictures taken..... and he showed me all his babies for photo's. These will go in the scrapbook for sure!

Chaucer is Neil's absolute favorite. So much so - that we actually bought a "backup" that we now have named "Bizarro Chaucer". We were in Borders w/ Neil, waiting in a long Christmas line and Neil saw Bizarro Chaucer and said "MINE! Dauder (how he says chaucer)" so, Sean and I decided to buy a "just incase" because at that point, without Chaucer there would be no sleep, there would be no peace.... it would be a bad thing! We've used him only once, and that was for a Teddy Bear Picnic that Neil had in school. I didn't want anything to happen to Chaucer in school, so we sent the stand-in Bizarro Chaucer. Ahh the things you worry about when you're a parent! But - yes, Chaucer is his most favorite, most loved teddy ever. He carries him with him nearly everywhere. He's well loved, fur isn't quite as fluffy and the stuffing isn't where it used to be.... you can tell he carries this bear in somewhat of a head lock, as the stuffing from the neck is totally gone! Once school starts, I can do some "surgery" on him and restuff him... but I think that would be too much for Neil to handle now!

The other two babies are Elephant, a little beanie baby sized elephant that plays "twinkle twinkle little star" when you push his belly. My cousin, Neil's Godmother - Bridget, gave it to me @ my baby shower. About a year ago Neil rediscovered it with some other baby items I was putting away, and hasn't let it go since.
Last, but not least, is Ming Ming, a chickadee. Now this one tickles me, because he's the teeniest little thing, about the size of Neil's hand - like a real chick! SO easy to loose. I can't tell you how often we are looking for this little guy. The Easter Bunny put him in Neil's basket. Neil named him "Ming Ming" all on his own, as this is the name of the duck in Wonder Pets, one of Neil's fav shows... I guess he thinks it's the same thing! I do think it's hysterical to hear him look for Ming Ming though, he goes around the house and says "Ming Ming....wear ahhh youuuu??" so cute.

The Blanket is a little more interchangeable. We have tons of those little flannel receiving blankets from when Neil was an infant. He has about 10 that he rotates through as his fav's to sleep and snuggle with.

Ahh, a boy and his teddy! You can click the pics for bigger versions!

ABA Therapy, and stabbing myself in the eyes.

My son Neil, is 3, he's been in the twp's preschool disabled program since February (started on his 3rd bday), has been receiving private Occupational Therapy/Speech Therapy 1 hour a week (each) since February as well.

He started receiving Early Intervention in our home 2 hours a week last September, which ended when he turned 3 in Feb and started school.

He is in these programs primarily for a speech delay. He does talk now, and since we began everything his speech, socialization, motor planning has drastically improved. He still needs assistance in speech and OT and like any kid he's got his good and bad days - but all in all, having only 4 months of these services we have seen an amazing improvement.

So, we went for his IEP and they suggested next year he receives the same preschool program, and suggest adding ABA Therapy for 2.5 hours a day (lunch is included in this time) This would bring his day from a typical 8:45-11:45, to a longer 8:45-2:45. This seems like a tremendous amount of time to spend in school, working. We agreed to it initially, and now having spoken w/ his private therapists, his pediatrician, and other valued opinions - we are second guessing ABA. We agree with them, and they all say the same thing - why so soon? He's only been in school for 4 months, and he's got another 2 years of school before Kindergarden - why do we need to push him hard, so soon?

For what it's worth, my son has not been diagnosed to be on the autism spectrum. I think, being in NJ where we have the highest rate of kids that are "on the spectrum" and of them, 4 our ot 5 are boys - I think that is what the school is assuming. The therapists that spend 1 on 1 time with him refer to him as a "mystery kid" and do not think he is on the spectrum.

For those of you who don't know what ABA is exactly, well, first, welcome to my world haha. Here is what I've learned about it from books, internet research, and other therapists. It stands for "Applied Behavioral Analysis" and generally, it is a lot of repetition - rewarding, and "programming". It is compared to the way you train a dog. You want your dog to sit? You tell it to sit over and over and over, and each time it does, you give it a treat. Same thing with ABA kids - you want them to say Hello? You prompt them to say it over and over, and each time they do they get an M&M. It is very by the books, very structured, very routine. I can see how this would work for some kids, kids that you can't "reach" in other means -but Neil? We are reaching him already. And frankly, in the real world we don't get "verbal prompts" and we don't get an M&M each time we do something we are supposed to. I am afraid of turning my smiling, laughing, creative and independent little boy into a robot.

Part of me thinks, hey, if the school is suggesting it - he must need it. Then I did research, parents in other districts FIGHT for ABA. We happen to have a fantastic district, and they just offered it to us. I....... Well, frankly I'm having a hard time finding unbiased parental opinions on this matter since the kids that are getting it had to fight for it, ya know?

I never knew parenthood would include having to make so many of these heavy, life changing decisions..... at least not so many of them, so fast. It sucks!

Neil's First Day at School

Today is Neil's Third Birthday! It's also another huge landmark day in Neil's childhood - his first day of school! Here's Neil 3 years ago, just about (he was a few days old in this pic)

I have been really emotional about sending Neil to school, but it's going to be good for him so we gotta do it. It's a preschool program through our district. The bus drives him and everything, it's all big boy stuff!

He did great today. The school bus was really late picking him up so things didn't go as smoothly as I'd have hoped, but he got to school just fine and with no tears. He got onto the bus with a little hesitation, then the drivers buckled him in and he was all set to go. I was a mess, crying. I tried to hold it together until I was out of sight though.

Then my mom and I promptly jumped into the car and followed/chased the bus, I had to make sure he got off the bus and into school today and I wanted to make sure he wasn't crying. I knew that if he wasn't crying I'd feel better.

He was totally fine. The teacher's aid called to let me know that he was having a good day, no tears! He turned out to be a lot more brave than I was haha. Mom & I went to breakfast and Target, and then got home in time for the bus! He looks like such a big boy on the school bus. Here's to no tears tomorrow from me :)

Before School -


No makeup, I'd just cry it off anyway


Waiting for the bus...


Sitting on the bus!



Getting home from school - look at his little bookbag! So official :)



I'm going to stop writing before I start crying again!

Occupational Therapy

Neil had his first private session with Occupational Therapy today at Weisman's. It went well. I have a lot of hope for this place, because it comes on a good recommendation. Good friends of ours have both their boys at Weisman's for different therapies and I've seen some tremendous progress in their kids. Neil will be going for Occupational Therapy and Speech Therapy every week. Thank God for Sean's job, and the great benefits we have now because otherwise we would be bankrupting ourselves over this! (Our copays used to be $50 a pop!)

The OT is really cool, she's got a lot of energy and she explains what she's doing, what she's looking for, the benefit of what she's doing, etc - and she does it WHILE she's doing it, rather than stopping to explain to us. It's great information and I'm glad it's a learning experience for me too. Plus the fact that she explains while she's doing it is great, because she's not stopping to explain and wasting valuable time! She's great though, and Neil really seems to like her and enjoy himself. So far it probably seems like a treat for him, because it's fun, swinging, rolling, crawling through the tunnel, etc - he's loving it! I expected him to cry when we left haha!

Speech is on Friday and I'm very excited about that too, though I know it won't be as fun as OT for him, I'm very excited and hopeful for his speech to improve. I think this in combination with preschool will be very beneficial for him. I'm still sad to send my baby out on a school bus, really sad actually, but, it will be good for him in the long run.

He'll be getting Speech & OT in school too, something like 180 min a month, which comes out to like 30 min of each a week. It comes in different forms though, sometimes it's solitary, sometimes it's in a small / large group, sometimes it's with the whole class. So, the private OT & ST is really important on the side.

February 2, 2009

On February 2, 2009 my baby turns 3. That is also the day that he is no longer eligible for "Early Intervention" and must move on to the township run preschool disabled program. He'll be in a preschool with about 10 other kids who also have problems with speech, OT, etc. Non "typical" kids, as they put it. He will have a special education teacher, & 2 aids. One of his friends is in the class already, since November, so that's good at least - he'll have a familiar face there which is a comfort.

So, on his third birthday, he gets up, eats breakfast, and gets onto the school bus. Yes, a school bus - for a 3 year old. As if being in school every day isn't a big enough deal, the school bus seems HUGE to me. I can't imagine my baby not spending every hour of every day with me anymore. I just can't wrap my head around it. I guess I've been pretending like it wouldn't happen, but, now it's like 2 weeks away and I can't pretend anymore, it's happening. I had been hoping that he would just "pop" into talking, and it would just start and all his other issues would go away and I could follow suit with my plan to keep him home with me a little longer, then put him into a smaller preschool, that is more for fun - like a 2 or 3 day program. But, while he is making progress, it's not enough right now.

I don't even want to write about it to be perfectly honest, it just makes me really sad. I'm focusing right now on ways to not cry in front of him when he gets on the school bus, because I don't want him to be afraid. I'm already planning on stalking the bus and making sure he gets into the school ok from the bus. I would stalk the classroom if I could, but they really frown on that. He's just got no idea, he's never done anything like this before and he's going to be in total shock. It will be from about 8:30 to 12. Please don't comment and tell me that it's "only a few hours that will fly by" or tell me all the wonderful art projects I can complete in his absence. This is the last thing I want to hear. I am 26 years old and though I have spent every second of the last nearly 3 years at home taking care of my son, I have not forgotten how to occupy my time. I would just rather trade every ounce of artistic ability that I have for this all to just be a normal childhood for Neil. I'm so sick of sharing my parenting with doctors, I really am. It started like, 30 seconds after birth and it has yet to end. I'm not sure why I haven't run off into the woods with him yet. UGH.

We have a meeting with the school tomorrow, hopefully I'll feel better when it's through, though, unless I come home and he's speaking understandably and tells me he doesn't want to be in this preschool, I really don't see that happening.

Feeling a little better.

I can't believe it's been 2 weeks since I went for that awful appointment at Children's Specialized. I think I cried for a week straight. Then I read about a dozen books on autism, in addition to officially getting my "Google Degree" on Autism.

I know I've said it before, but it just isn't clicking. I'm not an idiot, I pick things up pretty quickly and I comprehend what I'm reading. I'd venture to say that I'm pretty intelligent. I have a pretty good grasp on autism. It's still not clicking with me though, I just don't think it's what is happening to Neil. I don't know what else it could be, but I don't think it's Autism. I mean, it could just be a speech delay....no big fancy diagnosis, just a need for extra help in speech & OT. I've gotten more confident in my opinions too. When it comes down to it, nobody knows my baby like I do.

We met with the Transitional Planning people, these are the 3+ version of Early Intervention. They are out of the school district. I have to say I was really pleasantly surprised. Even at the meeting, I heard Neil talking to a few of them. They noted his demeanor change when the talking changed from easy chatting, to a demand. I know that's an issue, but it's not something unfixable.

I don't know if it's the insane amount of praying that I've been doing, but I think Neil's speech is actually improving. He's starting to get it a little better. Today in TJ Maxx we looked at the snowmen. I have made the mistake in the past of looking where he was looking, noting he was looking at snowmen and saying "oh, look at the Snowmen!" or something. Now I point, I've been making a conscious effort to point and say "Snowman" more simply. I think I was talking to him like an adult too much, which makes me feel like an idiot, but, hindsight..
Well, when it was time to move on, I took the snowman from him and put it back on the shelf and I said "ok, time to say bye bye to the snowman!....Bye Bye Snowman!" and waved. Neil did the same thing, he said "Bye Bye No-Man!"

Tonight, when tucking him in instead of giving him his binkie right away, I tried to get him to say it. I do this a lot, but not always depending on how maxed he/I am at the moment. He has said "Banbee" before for binkie, but it's usually after a while, like 3 min at least. This time I did it and I did an easy sign of putting my pointer finger to my mouth - I did it about 3 times, and he put his finger to his mouth just the same way. I gave him the Binkie right away. It felt good. I *really* needed these little signs of hope.

The people at the elementary school, where his preschool will be are actually very nice, educated and easy to talk to. I was very pleasantly surprised. They didn't treat me like I was lying to make Neil look better, or like I had no idea what anything meant. They asked a butt load of questions, worked with Neil a bit, observed his behavior. They picked up on things that I actually agree with.

And, I have to say I feel totally vindicated. After leaving the Speech & OT evaluation this afternoon, Neil & I went to get some shopping done in Target & TJ Maxx. We were in Target and strolling past the baby doll isle. We normally don't look twice at any isle that glows THAT pink, but as I was walking past I had a twinge of curiosity (remember the woman from Children's Specialized told me he was autistic because he didn't feed the baby doll) well, I grabbed one of the open baby doll boxes that had a "Try Me!" bottle that you could move and feed the baby doll with. I put it on the cart in front of Neil - he looked at it, grabbed the bottle and fed the baby. I was so happy haha. When we left the isle I said, ok, baby's going to go night night now, "Night Night baby!" and he said "Night Night!" as we were leaving. The store clerk was stacking boxes, and turned around to ask if I needed anything. I said "no thanks, my son was just saying goodnight to the baby dolls" ahh, how good it felt to say something like that! It's the little things, it really is.

Here's a current pic, for those of you who haven't seen him in a while:

RE: my crappy week

Tuesday's appt at Children's Specialized Hospital didn't go as well as I'd hoped and I'm just feeling really bummed and not crafty at all. I'm having a hard time focusing on anything that's not autism research right now. Even though the lady that screened him was just a glorified RN (MSN, CRNP), she had some really tough things to say and said she would be surprised if he wasn't autistic. I still don't believe that he is, it just doesn't feel right to me but I can't sort through the true feelings and the bias mom "nothing is wrong with my child" feelings.

She's pushing us to go get evaluated by the team really quickly so we'll "know". It just all pretty much sucks. I don't feel like he's autistic, I honestly don't. I'm scared he's going to get that label and then be burdened by it the rest of his school years. It seemed to me that her evaluation was not nearly as thorough as the Early Intervention evaluations have been, but that she's about equally certified to those people.

She followed exact textbook rules for screening and I feel like it's all square peg into round hole stuff. She put a baby doll in front of him with a bottle, bowl, and spoon. Because he didn't feed the babydoll, he failed that part. Now, this is a 33 month old boy, he's probably never even seen a baby doll before.

She blew a balloon up and let it deflate and fly around the room, it landed behind her wheelchair in an unaccessible spot. He laughed, cheered, looked me in the eye and showed excitement -but because he didn't climb and get it, or ask one of us to get it, he failed. Instead he looked, saw it was unaccessible, and moved on to something else. It makes sense for an adult to act like that - like - if I drop something a foot from me, why should I expect someone else in the room to inconvenience themselves, climb past me and around a table to pick it up? He accepted that the game was over and he moved on. I'm sure if he'd have tantrumed, it would have been a fail as well. There really is one right answer, and if he doesn't fit it exactly then he fails.

I mean, whatever happened to JUST being a late talker? It's not that he's completely silent. He gets his point across just fine and he gets what he wants through non verbal skills like reaching, physically putting something in my hand (like a bag of goldfish if he wants snack) or just doing it himself, which is is quite fond of as well. I think he doesn't have a specific NEED to talk. That's why when he goes to my MIL's house, he uses more words and communicates more - because she doesn't know his non verbal signs like I do.

Einstein didn't talk til he was 5, I suppose he would have been classified autistic. It seems like in today's age, every kid that is slightly off the chart is autistic. There's no individualism, there's no difference of opinions, they're just not fitting into the perfect little charts that everyone has, and so they must be autistic.

We have the formal diagnosis evaluation with the team on January 28. It's only a few days before his third birthday. I don't know if we're going to take him to that or not. We may cancel it, I'm not sure. I feel like I don't want him evaluated and possibly diagnosed until I am on board with the possibility. I don't want him labeled autistic, and then it affects him the rest of his school years, having that label. What if he grows up to be a completely normal functioning child, and is stuck under a stigma that was given hastily? The fact is, nothing is going to change in his pattern of assistance. He'll still be eligible for the preschool, if we send him - and that's the only thing they are offering. It's not like we'll get speech therapy from an amazing speech therapist that works for the Hospital, one on one time, etc - it's the same thing I'm already doing through the Early Intervention program......just, if I do it through EI only, I do it without the label.

Now here's where I go off the deep end with the biased parent stuff. I *know* I must sound crazy. I feel like an innocent man in jail for a crime he didn't commit and saying he's innocent. I'm sure all the kids are out saying "no, my kid is not autistic!" but really, I got this feeling yesterday. I feel like they want to diagnose him with autism because at best, he would be high functioning (though there is no official diagnosis for high functioning, it either is or isn't in the medical world) but I feel like if they diagnose him, and then he "recovers" then that's something to show off with. The more kids they are able to recover, the better they look, the higher their rating, the more money they'll get for funding, the more parents they will have competing to get their appointments. I mean, I know, I probably sound massively conspiracy theory right now, but it makes sense. I can't think of another reason why this lady who is only a nurse (MSN CRNP - Master of Science in Nursing Certified Registered Nurse Practitioner to be exact) would pretty much diagnose after making a half hearted attempt at playing with him.

And why is it so hard for people to understand or acknowledge that the possible "red flags" he does have could be a result of all the scary and invasive procedures he went through as a child? Weekly painful casting, bone manipulation, surgery, blood test after blood test (sometimes up to 3 in a day!) I mean, why is it so hard to believe that this child acts differently around white coats/clinical situations? I take him back for 6 month checkups on his feet, and though he's almost 3 and has been walking steadily for nearly a year - but he will not walk for the Doctor. Does that mean he can't walk or that his feet have degraded? No! Dr. Horn understands that, and finds other ways to work with him.

For every "red flag" of autism that he has, he's got 5 things that he does fine that autistic kids usually don't w/o work.
Here's his red flags:
*Speech Delay
*Social Delay - ie: anxiety in structured play groups like tumbling tots (though he's fine w/ kids in freeform play)
spotty eye contact - 90% of the time he is fine w/ me about eye contact. With others/strangers, it's about 60% good and 40% not good.
* Doesn't like play dough / floam / silly putty

things he does that would be uncharacteristic for an autism:
*smiles, laughs, & general happiness - not grumpy or unemotional
*empathy - will laugh when we laugh, cry if we cry, be scared / anxious if we are, etc
*responds to his name about 80% of the time
*gestures by way of reaching, leaning, looking at object, physically moving my hands to the object he wants me to see, pointing with middle finger (but because he doesn't always point with his pointer finger, they say he doesn't gesture)
*does not make repetitive movement w/ objects/toys or body (no rocking, flapping, wheel spinning, etc)
* no irregular pitch/singsongy-ness
* no self harm
* no unusual attachment to objects
* very cuddly and lovey
* very social with other adults, or older children (like my 8 year old bro, his fav person in the world)
* sleeps like a champ
* doesn't freak out if routine is changed up
* plays with dirt & sand (would generally be a sensory issue same as play dough/floam)
* doesn't "parrot"
* can make silly faces/noises back to us when we do them
* holds markers correctly (not just fist grab)
* uses a fork very well, and a spoon pretty well (still tough with liquids, but eats yogurt/ice cream just fine)

so, if you've noticed that I'm in an unreasonably bad mood, completely unfocused, or just generally look like crap. It's because I've been stressing, and crying, and it's pretty uncontrollable.