Friday, November 21, 2008

Side Effects May Very...

There is always a strange coincidence that occurs when I have a burst of creativity. I love to get motivated by something, something that makes me want to paint or draw....or anything! But I always have a very strange side effect, and that is WEIRD dreams. Yes, apparently my creativity doesn't like to take a rest so it filters itself out at night, in form of whacko dreams.

Last night, I had a dream that I had my old cafe back (I used to own a coffee house, started it from scratch - a very chill, hippy kinda place, lots of fun) so, I had this dream that I had the cafe back, and it had been neglected so there was lots of work to do. Well - I found this crock pot that had been left plugged in and cooking the whole time, and I wanted to turn it off but it was so hot that it was glowing and pulsing orange. I was very frantic about it, when the door bells jingled and I knew a customer was I ran out front to help the customer and guess who it was? Barack Obama and Bill Cosby....yes, and they both had thick, full beards. I was very star struck, for lack of a better word.

I was jumbling to try and make them cappuccino's, but I was also quite concerned about the crock pot catching fire. I was trying to handle both at the same time and Barack & Bill Cosby ended up leaving w/o their coffee. I was so bummed, so I tried to chase them down and bring it to them, but I must have either woken up or the dream went somewhere else at that that's about as much as I can remember!

So, yeah....I guess if I had something about Barack and Cosby on my mind, it's better to come out in a dream than on a drawing/painting haha!

p.s I can't believe I actually found a ready made picture of Barack & Cosby.... it must be fate

Wednesday, November 19, 2008

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 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:

Wednesday, November 5, 2008

Keep in mind...

Through all this recent shit that's coming up. I am trying to remind myself that I have followed my gut in the past, and been right.


I pushed, HARD to get him into Children's Hospital of Philadelphia and got him an appointment in 3 weeks for his club foot, because I wanted the best for him. I tried that for the developmental peds, but, the waiting list is 2 years and iron clad.

The Dr's suggested I quit breastfeeding because it was "too hard". I went against Dr's suggestions and kept nursing. Sure, I was struggling with it but Neil was eating and healthy though it wasn't easy for me. I went through tons of shit keeping that up. Sure enough though, as far as colds, flu's, ear infections etc go - he is rarely ever sick. I think like, once a year, tops.

His head was measuring in the 110% among kids his age. His body was in about the -15%. The Dr's suggested cat scans, multiple diagnostic test to explore the reason behind this. I decided that he couldn't deal with any more stress than he was already in from all the other Dr's issues - club foot, platelets, allergies. I knew the stress of all the Dr's was too much for him, so I said no to further testing. Well, I didn't exactly say no, I just didn't do what the Doctor said heh. I'm brave but I'm not confrontational :)

When he wasn't walking before 18 months, I stressed. I contemplated therapy, etc. When he did walk at 18 months, I was relieved, but he didn't do it again until a month before his 2nd bday. I was worried, despite the fact that I knew having had the club foot he would be slower to walk. Well, we made the call to not stress him with doctors/therapy - and you know, one day he just up and started walking.

To tell you the truth, the only reason I got into Early Intervention in August was because I found out that after age 3, they no longer do home visits, it's all done in the preschool only. Being against putting him in preschool, especially special ed preschool - I jumped onto the Early Intervention band wagon. Otherwise? I might just be doing my own thing and biding my time with him. I haven't decided if I made the right choice there, but it's too late now.

So, yeah, I've been validated in my rebellious tendencies before. I've trusted my gut and kept a stiff upper lip....well, not exactly, I usually end up crying like a baby, but still, I persevere, I'm just red and puffy while I'm doing it. I just hate HAVING to do this. I hate being forced to make these calls. I just want to run off into the woods and tell everyone to bite me. My baby is perfect. Leave me alone. But, unfortunately the "normal" scale of society is a heavy weight on my shoulders. Not to mention that Neil is about 6' taller than almost all kids his age, so people assume he's older and expect a lot more out of him.

I hear all these stories about kids that didn't talk "and then one day out of nowhere they started talking" and I wish I could tell this story for mine. I mean, I heard these stories about walking, and sure enough it happened. I hear "Einstein didn't talk til he was almost 5" and "my (child/nephew/niece/friend's kid/god son/granddaughter) didn't talk til s/he was almost 4" and I think...... I'll never last that long. I can't tolerate this stress and sadness for a single moment better yet another couple of years.

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.

Tuesday, November 4, 2008


what a crappy day. a crappy, crappy, shitty, crappy day.

how far can I trust my instincts and my gut feelings? How much of a risk should or can I take? I am sick of having to answer these questions. Life would be easier if I just ran off into the woods with my family and told everyone else to fuck themselves.

I guess I'd fit in a little better being such a protective mama bear.

Monday, November 3, 2008

I am a Ninja

Wow, ok - maybe it's the caffeine, maybe it's my super mom ninja skills, but I am totally on point right now. Seriously. I feel like I should be searching the place for radioactive spiders or something.

As probably a few of you know, I play the cello. I haven't done it in a long time, which I am sad about, but - still. Anyway, I have 2 cello's - I have a really good one (named Grendel) that I play on when I do play, and I have the one that I got when I was in 7th grade, (named Bull). The one from 7th grade has obvious sentimental value to me. While Grendel stays in the case, safe from running toddlers and leaping dogs - Bull sits and leans between the wall and the buffet table near the entrance to my kitchen.

Well - today I was herding Neil and Fiona (dog) out of the kitchen. I had Neil's pbj on a plate in my one hand, and he was drinking his juice as he was walking to the living room. Carrying food makes Fiona spin, she kind of backwards walks, jumps,'s annoying and cute at once. Neil was walking and Fiona leaps around him, knocking the cello over (Bull).

Somehow, I manage to grab the cello and keep it from
1. crashing on the floor
2. hitting Neil

also, I did not drop the pbj. It was like super human - grabbing the cello just inches from Neil's head, saving the cello (which I would have been completely devastated if it had broken) and not skipping a beat!

So, beware - I am quickly consuming caffeine and honing my super human powers!

Election Day

I'm not sure if you're aware of it, but tomorrow in the US is election day. As an American citizen, this fact may have escaped you - it's not like there's been political commercials, mailers, flyers, phone calls, yard signs, door to door solicitations, personal letters, buttons, stickers, bumper stickers, broadcasts, and of course corporate and small business endorsements that have been in place to remind us that there is an election tomorrow.

I think it's funny that people are complaining about "dirty trickery". Apparently there are a masses of false info going out in various forms saying things along the lines of "if you are a republican - vote on the 5th, if you're democrat, vote on the 4th" or, saying that if you have unpaid parking tickets, or a criminal conviction that they might be arrested at the polls. Now - maybe it's just me being mean and cynical - but, I kind of feel like if you're dumb enough to fall for that....well....maybe you can't be trusted to make an informed decision and vote? I don't know, it might just be me, but I have an intolerance for stupidity. Sure, they aren't exactly funny jokes but I mean seriously people, it's not like voting is a new thing.

If somebody went around putting out flyers that said "if you're over the age of 50, you can only drive on even days, under 50 drives on odd days" do you think anyone would honestly believe it? And if they aren't smart enough to know a scam when they see one, do they have any place on the road? No!

I'm just sick of protecting people from their own stupidity!

P.S. if you were irritated or felt wronged by my post, please at least remember to go get out and vote on Wednesday November 5, 2008.