Never.....

Trigger Warning "lol"
* Language*

Yesterday I was "in it" as I say.  I was all up in the Autism.  All up in it with the thought that hit me....This Shit is NEVER going  away.

That's a green table.  A green table my mother picked up second hand for Frankie for his room.  It was meant for him to color at, or play like a child should.  A few months after she picked up the table he was diagnosed....I said well, that will make a great area for ABA.

Brand new baby in hand I turned a room into an ABA center.  IN every IEP meeting they tell me how far he has come and I say how at 2 I thought he would never talk.... at the same time, as I turned his room in to therapy center I told myself with enough therapy he would be mainstream by kindergarten - first grade. Wrong.

People tell you how much things will change.  How once his speech is in order his behavior will regress, how when his behavior is better his processing will regress, a triangle I'm told, something will always suffer.   I didn't think it would go away, I didn't think one morning he would wake up Autism Free....that's not the case.

I know he will never be Autism Free, but yesterday it hit me.  He is going to be 5, as much as I feel I have been doing this forever, I'm STILL NEW here.  AS "typical" as I am, sometimes I can see scenarios and visions in my head.

Right now I picture myself on a dirt road.... I just tripped on my face due to all these behavioral problems and crap that have taken over my once sweet and mild mannered child.  I just look.....I look down this long never ending path full of tree roots and holes I'll probably trip in again.  I realize this shit is never going away.  I'm ok with it...its just weird to think about....too much to wrap my brain around.

Im Thinking too much

ahhhh, this hat!

I wake up and I dream of a time where I can worry or even just think of superficial crap.


All I can think about this morning is getting Lia an OT evaluation.  Then from there I think about how even though she is presenting with Sensory Processing Disorder....that is not a diagnosis alone.  She has no Autism flags, just the sensory.  So I am left here to fend for it myself.

I have been up for 3 hours and besides doing simple changing and drinking coffee, my husband has taken care of the kids and the dishes as I google for hours about compression vests and anxiety disorders in 2 year olds.

I long for a day when the biggest stress in my life will be what color kitchen curtains to get or what counter top would go best with my back splash.  Maybe it will never be like that, maybe no ones life is so simple, maybe its Facebook where everyone puts a best foot forward or people constantly complain about the most simple things.  Here I am thinking, seriously, your day sucks?  My child is having a 5 alarm meltdown over a hair touching her or her food touching each other....once the meltdown begins all ability to communicate stops and she is mute.

Lets add in the ASD kid who has been doing so well, but pushes the buttons of the super sensitive kid.....its like a chaotic orchestra of screams.  Again, tell me how much your life sucks.  I have developed an ulcer from the stress of my children.  Its something I don't talk about, I eat and if anything is triggered in regards to stress I feel like my insides are eating themselves.....actually....I have it right now. 

I read an article that said Autism Moms Have Stress Similar To Combat Soldiers ....... yea you read that right....and there are days I feel it.  I have started to snap in my head, I get so angry....all the screaming, all the freaking, all the aggression, all the repetition.....at any second someone could do something to disturb the peace that we are in......a kids brain is tripped and the screaming and crying starts, I cant get one minute to myself.

Through all of it I stay positive, really I do.  I am a Christian woman and I think to myself well, there is a reason for it all.  I know in the past I have asked "why?" to see the true reason years down the road.  My life does not suck.  I suppose I am blessed that I can think of substantial things....i just wish my brain didn't have to work so much

Inadequate Mom

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I have been meaning to write this blog for about two week, but in all honesty I didn't have the time or the desire.  Well that's not entirely true, i did have the desire but....yea time, that's hard to come by.  In this moment I should be doing something else, my dishes are over flowing and my washer is beeping but at the same time I hate feeling like I dropped off here.

SOOO there it is in the title, I feel grossly inadequate in a million ways.  I have an issue with taking too much on, not because i have to but because I genuinely want to.

~~~~~~~~~~~~~~~~~STEPPED AWAY FROM THIS POST FOR 3 WEEKS ~~~~~~~~~~~~~~

Ok I'm back.  I am friends with quite a few Autism Mommy's and Daddy's, some of them bloggers like myself.  Last night i drank sweet wine.....When I drink sweet whine or champagne I end up crying.  Crying because I feel like I should be doing so much more for my son.  I wish i had set his room up like a classroom, I wish i had time to do floor time at home, i wish i had an impeccable schedule, i wish i hadn't had the three kids so close, i feel like maybe someone else would have done better, i wish i had more patience.  Then add the parents that do the whole biomed thing.  Here I am wondering.....would all that stuff make my son feel better on the inside.  AM i a FAILURE because i didn't spend thousands of dollars on supplements and diets etc to try.

I see posts on facebook about these kids diets and "we never ingest anything processed" as my kid is munching down on a pop tart that I just gave him to bribe him to eat carrots because we are trying to go gluten free (he has Latent Celiacs).  IF that's not the most asinine thing ever I don't know what is.

I see people perfectly potty training their children and here I am having knock down drag out fights with my son to just sit on it....so i gave up for a little.  To me if it takes till he is 5 so be it, but i feel like a failure, i should have printed laminated charts and graphs and highly nutritious treats that he eats with no problem to train him for the potty.

Two years ago when I started this I envisioned myself as this with it mom.  The one who had all the therapy tools, who kept her cool and was a rold model for other moms.  I would give my kids the best foods and give them great supplements that helped his tummy and brain feel better.  I would be persistent and strong....I would just be awesome.

So last night I cried to my husband because I don't think I am any of those.  I'm chugging along.  My kids think I'm awesome,  My family does too....Really that's all that matters.   I think I will just live in the mindset that everyone is bragging on facebook and they too have messy houses and let their kids eat pop tarts for lunch if they really have to.

I want a Box of Wine For Christmas

Don't judge me. 

I am going to get my box of wine and then place it in this purse!  There have been many parents who have kids on the spectrum who admit to being on medication, happy pills, whatever you want to call it.  I personally am afraid of antidepressants/anti anxiety meds so instead I will have a drink. 

My husband made a joking comment to me last night.  Basically that its funny that I have a drink almost every night.  Maybe it was something in me that makes me feel judged but my question is, why is our society so ok with pills prescribed by a Dr. but freaked out by alcohol (in moderation) or God forbid Marijuana. 

Who knows, I don't have the answers....but after my kid spilling soup about an inch from my computer....I'm having a drink

Just life

I meant to think of something profound and amazing to write about today.  I got nothing.  I was sure, positively sure, that something would jump out at me.  Instead I spent most of the day annoyed that regardless of what I do someone is spilling juice or something wet on my couch or rug.

This is parenthood, Autism or not, kids are just messy.  I need to really get over it I know, but today was the day when even my husband was spilling things.  I know better then to buy nice things but at some point you don't want your cheap stuff to get ruined either.

Juice cups with tops you suggest?  Oh yea we got those.  Somehow, like the juice gods are laughing at me, no matter what cup there is liquid coming out.  First next to the table....then later under the ottoman...then husband spills bowl of water he's using to shine his shoes....by the evening, when they opened the fridge and dumped an open yogurt on the floor.......

I asked the children to leave the kitchen as I was about to HULK smash the fridge. 

I think thats one of those annoying things about Autism.  The boy sometimes just doesn't get it.  He does something and no matter what action is taken, he continues to do it and never understands really why I am upset.  For the 10,000 time i say dont open the fridge, ask mommy for help.  I turn around and 5 minutes later...kids in the fridge.

Maybe it has nothing to do with Autism....Maybe Bill Cosby was right.

Sometimes its Me

Since I have had children, I suffer from slight Agoraphobia.....some days Crazy Big Agoraphobia.  When I was childless I drove everywhere, did everything, saw everyone...I.Was.Awesome. 

I can only blame Autism a little in all of this, in reality its me.  It started with being fearful of my sons behaviors in public.  While he learned to control most of his behaviors, for some reason my fear and anxiety continued to grow anyway, I feel safest in my cramped apartment. 

I feel like I a doing my children a disservice.  My friends bring their kids to the park and on play dates and I am riddled with anxiety about just leaving the house.  Do I have PTSD or is this typical of mothers of three young children?  I feel like a crap mom. 

Its Saturday, I have no plans.  Kids are playing blocks and I am meandering the Internet.....and I feel like crap because the idea of putting them int he car and going anywhere is too stressful for me.  I need to grow out of this.  Till then, its blocks and Arts and crafts :)

Helpless and B*#chy

Today I feel helpless, usually I feel bitchy. Another note in Frankies book today, chair flipping, screaming and head slamming. 32 minutes into being home and I've been slapped in the face.....I put tv on because I can't handle him. Can you imagine wanting your child to stop touching you. 30 minutes into being home and I can't sit on the couch with him beause he is sticking his fingers in m bellybutton, doing headstands on me, pulling my hair, slamming his forehead into mine as a game.

Today is one of those days I question everything I am doing and wonder if I am doing it in vain. The supplements, the doctors, intense schooling.....is it all in vain? I never let myself think that Frankle will not finish school, go to college and get a job. I always think he will meet a great understanding girl and get married and make me a grandma. Then I have the few days like this where I wonder if that's all a delusional fantasy. He gained so much in the first 6 months of therapy and now he has plateued.....we all though he would continue to go in leaps and bounds.....now it's like tiny baby steps if anything. This is what leaves me feeling helpless.

Now for Bitchy......it's a permanent state I am in.....ok maybe not permanent. Here is an example of something that may help those parents with typical children understand. My son is in a class to teach him how to eat. My son is almost 3 and a half and he needs to be taught how to eat without flipping out. he will have a full on anxiety attack if the entree is not cereal or chicken. No amount of punishment I'll end this anxiety. Your typical 3 year old eats food, asks for food, asks for drinks, can sit in a chair and can be disciplined normally.....mine can not. I am sure I will still get some parents and strangers saying I'm some sort of push over parent and I should let my son starve, he will get the point, he just needs harder parenting and let me tell you...I AM F-ING SICK OF YOU.

So there is bitchy, sometimes little things wil set me off because it just took an hour to do something that should take 5 minutes. The constant questioning from strangers and non strangers alike makes me bitchy. If you had cancer and I questioned you constantly if you really thought chemo and radiation were the right treatment......your getting it now right? No my child is not screaming because I'm a shitty parent. Not having a table cloth doesn't make me lazy to discipling my son, it means I am tired of an entire table of things falling on the floor.

To end it all though.....is a little boy running in cirlces around m living room singing " I've been looking for a friend like you, someone, to make each day brand new and share the fun in the sun, even if a rainy day comes....."

He's an Angel....

Beer Cures Stress Headaches Right?

That or eating this many cupcakes.....right, that should work?  I have had an on and off headache for almost a week.  I take Advil and Im good for a while, then it comes back.  Its not an horrific pain, its just annoying.  I usually get ice pick headaches....its quick pain that comes fast and goes away fast, its a type of migraine and being that my mother gets them, I dont think much about it.  

These last 2 weeks and next week also, have been very stressful.  Last week I had Frankie at Stony Brook for the MRI on Monday and then back out for EEG on Friday.  Both trips involved 45 min drives both ways, leaving Lia home and having parents take off from work.  Last week husband also started training his new staff at his new job.  He has been away for 10 days, off for one and then Last Monday started aggressive training.....it is now Wednesday and his first day off is tomorrow. 

This week we did our "see you laters to our therapists".  To think In February, I was so pissed about having people in my house 15+ hours a week and now I'm crying about them not being here.  Now I have all this time, and i have to fill it.....maybe I will go to the zoo.  

Next week, the boy starts school.  I know I will take it worse then him, that's just a fact.  Endless paper work has overwhelmed me, this is why I was a crappy Legal Secretary.  I sign my name on a million things, and I'm not really sure what I am signing.  Medicaid? Sure, confidentiality ok!  release of files Great....wait what?  

Hopefully in the next few weeks the head pains will go away.  *Sigh*......when did My baby grow up?

I'll take Overwhelmed for $1,000 Alex

"This woman Hasn't finished school paperwork,  has Early intervention ending in two days, has a daughter with 102 fever for 2 days,  Drove 45 minutes each way 2x last week to go to a Neurologist and is completely overwhelmed "......."WHO IS The Neurotypical Mom"!

I've been meaning to write and then something comes up.  I have a huge issue with being easily overwhelmed.  When too many things are on my plate, I literally freeze up and do nothing.  I need to bring in the paperwork for Frankie's school tomorrow, but being in the process of changing doctors has left me confused on who to get to fill out the physical form.  New Dr wont see him till the 12th, I cant find the stupid transportation paper work....I have a headache.   Speaking of headaches, I have had one for 3 days.  I thought maybe it was the hurricane, all the pressure in the air, all the news media making me INSANE.  They freaked us out, our grocery store shelves were empty, we all freaked.  Now granted the ocean broke the boardwalk and there are people who are still out of power and will not get it back till Friday the earliest......no one died and our homes are still here.

Lia had a fever all day yesterday, which spiked to 102.5 around 6pm.  Ran to Dr today who said it wasn't ears or strep but her throat is red......awesome.....so it continues to hover around 102 every time the Motrin wears off.  If in 2 days its still here I have to go back.

EEG went well, separate blog on that, I promise.  My baby starts school in a week and a day.  I'm trying to hold back tears.  This is not fair, I am not ready, I think I might have to be sad for a little.  My emotions are all over the place :(

Prisoner

Does anyone else ever feel like a Prisoner in their own home because of Home Services?  My 720sq foot home is getting to me today.  I use to have days where I could get out at least in the afternoon, but now with the new summer schedule I'm pretty screwed.  I guess I'm just sad that I have a 2-3 hour gap between morning therapy and afternoon therapy and they by the time the last one is over its 3:30.

I feel like my son has had the crappiest summer ever.  3 Hours just isn't enough to go to the beach, maybe enough to go to the pool but I feel so rushed.  It's no ones fault I guess, I'm just down about it.  Today for example I projected my anger on my husband.  He goes to his MMA/Brazilian Jui Jitsu classes in the morning when LP has therapy and then at night if he is off from work.  So today of course I am a huge bitch and i go off about us not doing anything today.....to which is says "well what do you want to do, I suggested going swimming and you said no".  Grrr got me there I did say no.  Truth is I don't even know what I want to do, I just want to not look at these walls.  I said "i want to go out too and do things.  I want to go get my nails done"....to which he replies, "ok, i will take the kids go get your nails done." I said no.  "Hey do you want to go to that bar your cousin is guest bartending at.  Leave the kids for a little" he asks.  Again I say NO.....DAMN IT, I'm too controlling to leave the kids.  

I am so controlling, I need to control all situations.  I complain because I want to do things, but given the opportunity I don't because I cant handle not being in control of the kids.  I'm probably doing my husband a disservice since I don't let him do anything.  Well I let him to dishes, make money, put things together and put LP to sleep.

So really I do this to myself.  But honestly, I wish I had more time to do things with LP.  I'm so sad about him starting school I am holding back tears.  Its just not fair.  I hate you Autism

Emotional Breakdown take 2

I have alcoholic tendencies.  At this point in my life I don't really drink because while I'm not a full blown alcoholic, if you put it in front of me I will drink it, and then I will want another and I will finish that too and probably want another....maybe that is alcoholism?

This is the first time in my life that I have gone through something this stressful with out alcohol.  Drinking is self medication, it helps you numb the stress, the emotions.  So maybe things going on in my life are magnified because I'm just not use to it being so raw.  Most of my days are good days, but then there are days like today that are bad.  I should be happy today because my baby made pee pee on the potty 2 x today AND he said a full sentence!

I am this strong looking mom on the outside but I'm not.  I sit here most days and do nothing.  My bathroom is horrific, the wash is never put away, forget about the dishes. Since around January, I can not get myself going.  I know it will pass but I wish I knew when.  All i do is the kids, I handle the children and even then I don't do my best.  The husband ususally ends up doing mountains of dishes and taking out the garbage, he cleans the toilet and put away the clothes, I feel bad, its my job and Im not doing it.  Someone said something about late onset post pardom......who knows, I do know I got sad after having the boy so its possible.  I'm not severe, I'm not going to flip out, but I am going to cry and I am going to want to be alone.

I should count my blessings, two beautiful children, a home, food, water, clothing.....and like a said in my status......a husband who gets out of bed and starts our families day when I rather lay in bed and sleep the world away. I feel bad because I don't really share much about my feelings and people don't realize. 

I'll be better tomorrow :/

Stop Spinning!

I don't even know what in Gods name is up with the boy today.  Seriously, the behaviors the last 2 days are pure insanity.  Many people have told me that when he is learning new things, it won't be uncommon for him to regress in other areas.  HOLY CRAP!  Here I am hoping that these Omega -3's and vitamins are going to help him out and he is behaving like a nutso......talking in sentences, but acting like a nut.  I guess that would prove the theory right, he's talking and having horrible behavior.....before he was being good and just using vocabulary.

He looks at me and says "mama, help me, get juice".  Aw how cute!  I get him juice and I go about my scrap booking.  I hear him drinking his juice and then I realize I hear spitting.  He had taken all 10 oz of water/juice put it in his mouth and then proceeded to SPIT it onto his castle and dinosaurs.  My carpet was soaked, his clothes were soaked and I was on the verge of loosing my mind.

Mind you this has come after a long day of cracker smashing into my rug and table flipping.  Yes, you heard me right, he tried to flip his work table over at least 5 times with all 3 therapists today.   Beasting out table flipping ala Teresa Guidice (Real Housewives of NJ).  He's also shaking his body and head uncontrollably which I've never seen before and spinning again, which I haven't seen in months.  The last thing he did was slam his head into the steps TWICE......he hasn't hit his head on something since he was 16 months old.   

I am so bummed today......I have this super optimistic outlook for my son and I get scared when I see these behaviors come out.  I ignorantly thought they were gone, today hurt.  August 9th I made a neurologist appointment for him.  I'm on  the fence about bringing him to a Developmental Pediatrician......I'd bring him to a DAN! Dr but they don't take insurance.

The last few weeks we started down this road of starting alternate treatments on top of his therapies (which I will say are the only proven methods of "Curing") and its just made me more stressed.  I am hoping I can see a difference soon, cant wait to try the behavioral balance in the coming weeks.  We are actually using my husband as a guinea pig first, we got him Omega-3's and the Behavioral Balance in pill form.....he starts tomorrow.  Hopefully that can work for him too and relieve some stress and help him socially.  All we want is to fix our baby.......I know there are people that say they want to leave their child the way they are but for us, slamming your head into a step and spitting on your toys is not ok.  Dear God, help us fix our baby.