Nightmares

Oh man.....this will be quick post, but i had to share.  Little girl has been sick on and off for 2 weeks.  The minute they said Ear infection I freaked.....this is how it started with Frankie.  Frankie was 9 months old when he started constantly getting sick, at least Lia is 14 months old.

My mind is playing tricks on me, I am having anxiety, I keep thinking something is wrong with her.  I ave a gut wrenching fear of her falling into Autism too, it cant take the girl too, they say girls have a lesser chance right.  The doctor says he doesn't have any kids who has ASD with sisters with it.   Truth is, it is all in my head, its an irrational fear at this point.  She's hitting milestones, she has eye contact, she tries to talk.....I'm just irrational.

Knowing this, I still went to sleep last night and had a regression nightmare.  Ugh, i dreamed she didn't wave anymore, she didn't talk, I relived Frankie's whole toddler hood but it was Lia.  When she gets better and hits 15 months I might just get her evaluated to calm my nerves.....and then even if there was concern they can start super early.

When You Know Something Is Wrong

So this is the second time I have come across the issue of knowing something is up with another persons child.....and they do not.  I suppose I am lucky because neither person was a good friend by any means, but it still seems to make me feel odd.

The first time was at a baby play group, one mom kept saying her child was constantly hurting himself and other kids.  She went on and poured out all these emotions and concerns as her 18 month old son ran around haphazardly grunting.  She said "who do you call for early intervention".....and i handed over the number that was nicely stored in my phone.  I tried to comfort this woman, who was basically a stranger, and tell her it would be ok and he didn't seem so bad, it was probably nothing just a phase.  It was then I was mentally brought back to that same time in my life, the time when I looked at other moms and hoped they told me my son was fine.  They did.....they were lieing....and so did I.

This last time was at the doctors office on Wednesday while the kids were playing.  This little boy flapping around and spinning, spinning took a fancy to Frankie's Thomas trains that he left on the little play table.  Frankie caught wind and went over and took them back.  Little boy freaked out, FREAKED, not a normal freaked out either.  Mom came over and apologized and there I was seeing myself in another person.  She did this thing I use to do before I knew what was going on....I would talk out loud to myself pretending I was talking to the boy, maybe as a cry for help.  She said " are you hungry, not that you eat anything, not that you can tell me what you would want to eat.  Its not like you talk ever.  imagine a two year old who just doesn't want to talk"  Bells were going off in my head but of course this woman was a complete stranger.....

The question is what is that fine line.....when do you make a comment.  No one wants to hear Autism, I think you can throw a mom into tears or a fit of rage if you threw the idea of Autism their way.   I just wish there were rules....

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

Autism......and my marriage

We use to be fun.......fun, fun, fun.  I don't think our fun disappeared because of the Autism, I think it was more the whole becoming parents thing.  We never fought, we always had money and we were always partners in crime.  Now its a struggle to stay on the same page, my husbands inability to realize that our son wont be "cured" and the fact that we have nothing in the bank that is making it our lives a Roller Coaster Ride.

I don't believe the statistic about 90% of Autism families end up in divorce blah blah blah, I believe those people would have ended up divorced anyway.  I feel like its some inflated number to scare the crap out of people.  Is it harder, yes, but does i mean I walk away from my marriage because we aren't on the same page about discipline....NO.

I might ruffle some feathers with the next thought on my mind....but that's ok.  Sometimes I think we are so obsessed with the idea of Autism that we completely forget about our spouse.  Do I think everything in my marriage is my fault, no, but I don't help things.  Since my son got diagnosed all i do is read and do research.  I talk and talk and talk about ASD to everyone.  I blog, I comment, i video tape.  I concentrate so much on my son, that i forget my daughter, I forget God and I forget my husband.  Then all the reading makes me grumpy and I'm a huge bitch.  I yell at everyone, i freak out over nothing and i slip into the stupid depression I am pre-disposed to (thanks family history).

So no, its not the Autism itself, its the parents grasping and clawing their way through it, trying to help their kids communicate, make them feel better, to calm their children's nerves......you end up loosing yourself, how can you not loose each other?

I use to be funny......I use to do funny dances and stick straws up my nose, I had fun stories, I had friends, i use to put on make up and do my hair, I sung in my car, I had a great collection of big sunglasses, I use to give a shit what my house looked like, I use to be optimistic, I use to dream,.........and stupidly I lost all that because I'm so self absorbed in a damn disorder that I cant win against.  I watched my neighbor throw tens of thousands of dollars in the garbage on EVERYTHING......and her son still wont say a word......he wont look at us.  She says I'm so lucky, I'm so lucky he looks at me, that he says he loves me.

Listen, I'm not saying I'm giving up, or that I'm not going to to my damn best to help my son, but I think for the sake of our marriages and our sanity some of us need to step back.  I wish i was like my husband, hes so "well I had the same issues and I turned out fine, I don't know why your shoving fish oil down his throat"  I got annoyed, but he had a point.  I've also left him out of it all, i go about my business dealing with things, doing new things and I don't even tell my husband what I'm doing......its like I forgot he existed.  Sucks, i feel like a great mother and a crappy wife.  I hope I can balance this out some how

I'm Supermom, an Autism diagnosis will never get me down......yea right

I wonder if its possible to be in denial for 4 months? Ok, maybe its not denial that i exactly suffer from, but instead extreme optimism. After LP's diagnosis, I thought to myself, "ok this is ok, we can do this" I smiled at the psychologist and said "That's what I thought it was, great at least now I know". I then began an aggressive Early Intervention program and read everything I could about Autism.

I never cried. I had the optimism that since it seemed to be a High Functioning form that my son would be perfectly fine. He would grow up to be the Aspie type, have a job, live alone, get married, have kids. I never have doubted any of those things in my mind until last week.

I told myself I would never get down, I would always be positive......that is until transition tantrum 500,000. LP has been through another round of evaluations, which once again placed him below what I expected. No matter how much he can read and memorize, the fact that he cant have an actual conversation with you that's not scripted puts him at a lower percentile compared to other kids.

In four months I never broke down.....the last 2 weeks I think I have broken down at least 4 times. I'm going to get all cliche now and say things like....I never pictured this as our life, I'm mourning the perfect child I wanted, parenting shouldn't be this difficult, I just want to go to a mom and me group with out my son running and jumping uncontrollably, I want strangers to stop staring, I don't want to be anxious about LP, I don't want to fight with my spouse about how to handle things with LP, I want to leave my son in Sunday school without disrupting the whole class, I want my son to understand that things are dangerous, I want regular discipline to work, i want to shower without worrying that LP has jumped off a chair or dresser......I could go on forever.

Don't get me wrong, in 4 months my son has gone from non verbal to reading. He has learned to sit and stand, give strangers hugs, give kisses, say Hi and Bye, ask for food or a drink, hold hands while we walk, love his sister to death, take a bath without crying, learn to love the pool.....and best of all, tell me he loves me.

Its a long road we are on.....i hit some bumps this week.....I'll be more optimistic tomorrow, i promise!

The Story of Diagnosis

On July 6th 2008 I was handed a beautiful 7lb 3oz baby boy. A boy, who I knew would have me wrapped around his finger for the rest of his life. My Little Professor (LP for Blog purposes) grew typically till around 9 months after he received a Flu shot (something I will go into another time). LP ended up in the ER a week after the vax with Bronchiolitis and low oxygen, a month after that he started vomiting on and off for 3 weeks with no explanation. At this point the chronic ear infection, which went on constantly for 10 months began, it was only till i stopped vaccinating him did the ear infections end.

It was at this point that LP's development rapidly slowed down. He never had the typical regression of skills like a lot of children with Autism do, instead its like time stood still. His body grew, but his speech did not. He learned to walk, but constantly fell or got hurt. He knew his name but never turned when called. He did risky things, without understanding the idea that things hurt. His behavior was beastly and regardless of the amount of time out, scolding or spanking he didn't improve.

The idea of Autism came into my mind when LP was 15 months old. I couldn't see how it could be true, he was cuddly and happy, he seemed so smart. I was told by doctors , friends, grandparents that boys develop speech slower, that it was normal, that the behavior was because of lack of discipline etc.

I believed it until LP was 2.5 and had him evaluated through Early Intervention. May I say, those who live in NY state are so blessed with the Early Intervention programs we have......if you are thinking of moving to get better services, NY is a good place to be. Only after 2 evaluations, one by a psychologist and a second by a Speech Therapist ,did reality really hit. LP was placed on the Autism Spectrum.......his Receptive Language was placed at about a 9-12 month level and his expressive at 15-18months......that was like a punch in the stomach. It was recommended he receive 10 x 90min session of ABA a week with 1 hour of parent training and 2 x 45 min speech sessions. This was another blow.....2x a day for 90min each session I would have strangers in my house, some days i would have 3 different therapist for a total of 4+ hours invading my personal space and bonding with my new baby( I had just had my daughter 3 months prior ).

So It began in February....and my son has progressed in Leaps and Bounds. Seems intelligence was never an issue, he is as a say a Little Professor. He has a knack for memorization and letters. He can read, and memorize about everything....today he told me to "taste the rainbow". ABA has been a blessing in terms of his behavior. Though his new found speech is a lot of memorized sentences and phrases and not as functional as it should be, I get to finally hear my sons voice. I always wondered what he sounded like.

Friday Is the day we meet about the transition from Early Intervention to our school district.....this will be my first fight of what I'm sure will be many. Wish me luck! New Chapters are always fun :/