I'm back.....to complain unfourtunatly

As cute as he is....he needs to go back to school.  The photo above was taken at my aunts house where he continued to slam in those keys.......he's not the type of Autistic kid that is a musical savant may I add.

So yes, I need it to be Tuesday.  Mommy is getting mean, it needs to be Tuesday.  I can only Thank God that I was able to go out with friends Tuesday and out to dinner with my husband and another couple on Wednesday because if I didn't have those breaks....I don't know how I would be.

Today I felt like a horrible mother, This week I have been taken back to over a year ago when I just could not handle the boy.  I guess this is what people say is that Regression during school break.  He tests me to no end, climbs up things after repeated taking him off, ignoring etc.  After the 7th time climbing his table he got all giddy to see me coming to get him and fell off.  Then he wants me to be sad because he got hurt, but I'm not sad, I can only think "do you see why i told you NOT to do that"

Push sister, throw shoes, throw cereal....all with a smirk and even with the wrath of God in my eyes he is only scared for a second.  It needs to be Tuesday, I need the little boy who comes home and tells me how much he loves me back....not he one who just repeats back to me "don't you test me"

You have fun at school?

I got Frankie off of the bus yesterday, he was so happy! He grabbed my face and said " you have fun at school?". Grrrr, now he is expecting what I say. Kim came yesterday for his first real ABA session at home. She had an idea to make pictures on the sheet that the teacher sends home so he can tell me what he did at school using visuals instead of words. Bus has been better, now he smiles when the bus comes!

The last two days of school he had some issues with aggression. Everyone keeps telling me it's normal but I am one of those crazy moms that thinks her kid is perfect. Even with Autism, he will have perfect Autism. Did I mention I was crazy?

Today I didn't get any violence notes home, I got "Frankie refused to eat lunch". In the communication notebook Andre (his teacher) said he was kicking to be funny. I was pretty sure this was what it was, he doesnt aggressively kick, he does it for attention. I find the more I feed into the kicking, the more he does it.....if I ignore him, he will find something else to push mommies buttons. He is in a HUGE testing phase right now. He is testing at school and at home. Not a fan, no no no.

On a positive note, Frankie made some pee pee on the potty today. His speech teacher also wrote how he used a sentence appropriatly. On Fridays Frankie has group speech, so today as he passed one of the classrooms he said " where is Jayden?". His speech teacher was thrilled, she id they have only picked up Jayden at that room twice so she was amazed he remembered. I wrote back about his memory, it's amazing. A year later he remembers things, he remembers he hates Super cuts, he remembers routes to people's houses and miles away he knows where we are going. He is a little ball of miracle frustration this week.

A why me kinda day

Yes, I am having a why me kind of day.  Look at that kid, he is so cute, I shouldn't feel like this.  I woke up to a ticket on my car.  It the end of the month, I guess the Nassau County PD decided to drive around blocks at 1:45 am looking at inspections.  I was waiting till Monday to get the inspection because of the check engine light and having to clear that and drive it for 60 miles first.  I suppose the officer wouldn't care if I had left a note about my situation.......grrr.  Such a waste of a day, wont have the car back till Monday....husband is working till Monday......but then has to go to Westchester to deal with an issue with a prior employer.

My son came home with a note saying he was have outbursts and trying to flip chairs, and refused to eat lunch.  I knew that he would regress, he was going from 15 hours 1 on 1 to 30 hours in big groups.  I was foolish to think it wouldn't happen and that Frankie would keep excelling at the speed he was going.   So sure he would talk more.   Here I am 3 weeks into school and my son has become Echolailic again....F$*K......I'm suppose to say How are you  and he is suppose to say "I'm good" like he always has but no....he looks at me and says "how are you?" S&%T, S&%T, S&%T.........I miss him.  I feel like he gets home and I spend 3 hours with him, most of which is eating dinner and getting ready for bed. 

I would like to be more emotionally OK here at the Neurotypical Mom but things are just bad.  I have to tell myself though, its OK.  Maybe its good for me to be so raw on here, to tell you guess what, this sucks.  Autism sucks....and it stole my kid.  Even if I recover him, I'm not going to get it back.  I'm watching my daughter do things Frankie still hasn't done.....I didn't think that was possible, I know what she wants, i can read her cues, I don't feel helpless as she cries because i don't know whats wrong. 

I know things can get worse.  I will not tempt God by saying it cant get worse. 

School is making me feel out of control

So, I'm a control freak.  I wish I was a neat freak, but no, just a control freak.  I liked when I had Frankie getting services at home because I ALWAYS knew what was going on.  Don't get me wrong, I get tons of notes home and write back and forth  but I'm not there.

I guess I am lucky because I have heard many times about kids regressing when they start school or are placed in a program that doesn't fit them.  Well Frankie hasn't regressed.....he is kind of just staying the same.  I'm spoiled though, he gained so much in the first few months of  his ABA therapy that I just assume he will always proceed in leaps and bounds.  The reality is that, his progress was a blessing and now in reality progress is not always so fast, sometimes it is SLLLLOOOOWWWW.  He comes home and mentioned things here or there about school, but never to me.  He will just say "Jada and slide" so I figure he went to the playground which was confirmed in his communication notebook.

Today he starts ABA at home again with Kim.  He is only getting 2 hours a week, but....whatever its something.  I had to fight to get that, it was so bad they didn't even write it was behavioral therapy on the IEP.  The reasoning for that was so that administration wouldn't get mad....the games we have to play because of budget cuts.

On a side note we are on day 10 of Diflucan.  I am crazy and expected miracles EVEN when I was told it would take weeks.  SO, yes it will take weeks to see anything, if they gave him more medicine it would have made him sick, to kill of yeast that much would have made him sick and that's not what we are looking to do.  I will keep you updated :)

Our First Day of School....yes Our

This morning my alarm was set to go off at 6:15am to start the process that would be my sons first day of school.  My daughter had other plans, she decided 5:30am would be a better time to get up.  I remember what i hate so much about getting up early....the fact that its still dark out.  So up we got, put the boys stuff together, started making waffles and coffee.

Husband was passed out....he had just worked 2 weeks straight, sleeping between 5-2 hours a night to get this restaurant up and running....I let him sleep, dear God he needed it, he looks so beat.  Next to him was the little boy that crawled into my bed around 4am I'm guessing.....there he was mouth gaping wide, didn't fall asleep till 10:30.....this should be fun.  Husbands alarm goes off at 7, boy is pissed, he was trying to throw pillows over his head, not today buddy, sorry.  He ate his breakfast at a snails pace, thankfully I had laid out everything he needed for the day.

So we took some pictures (see that poor man looks so tired) and got ready to go to school.  I filled out the transportation forms late so of course I have to drive Frankie for the next week or so. He got to his class and he went right in....that was it.  Hung up his coat and that was that.  Where were the water works?  Where was the theatrical MAMAs!?!?   Well don't get me wrong, he tried to grab my hand, but his teacher Andrea said, no no, mommy is going home and you can stay and play.  Play he did, with some blocks.....and I went home.

I cleaned, it was awesome.  Went back to pick him up.  I was so nervous that maybe he did something crazy, or maybe he missed me an hour into school.  No such luck.  There he was with his backpack on ready to go home.  I was more excited I think.....he said "mama coming, mama coming".....His teacher said "I told you she was coming".  Andrea (his teacher), told me he ate a chicken sandwich (really?!?) had snack, played nice but proceeded to get whiny later in the afternoon since there is no napping. 

All and all it went well, I guess I miss him during the day, but i can get so much more stuff done honestly.  Very uneventful.  I wish I had more.....darn it.  Maybe in a few days :)

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 :(

Just Kids

It's Done, school is picked.....Just Kids is the one!.....I'm happy and nervous at the same time.   We went back to see the school one more time, this time with Kids in class and not on the playground.   I felt better this time, I felt like this would be a good place for the boy.

It was so cute, they had an underwater theme going on this time.  A door to one classroom had jelly fish tentacles at the door.  LP looked comfortable.  I'm sure he will transition better then I will.  I guess I am nervous because he actually will not be in an Autism program, just a regular special ed class....whatever that really means.  If there are any kids in these classes that are on the spectrum, they are on the higher end like my buddy here.

Just got the paper work in the mail too, oh I'm so nervous!  The idea of school supplies.....when I pictured my kids growing up, I didn't plan on school will at least five.  In the packet was even the list of events and topics they learn through the year.....so cute.  I'm so proud of my little guy and the progress he has made.  To think how far he has come in such a short time.  I feel like I am sending him to college.  *Sigh*......my baby is becoming a kid

Great Job Yelling at That Boy.......

.....wait what?  Today we went to look at another pre-school program and get a screening.  This was the second school we saw, and I think this is the one.  The first school we toured was huge, I felt like I could easily get lost, it was also one of the only schools close to the house with full day openings.  I found it strange that when we went through the tour, they never showed us a class with kids in it.  Wow, um that's a nice room and all but can you show me some kids?  I suppose they didn't want to disrupt a class but how am I suppose to get an idea of what goes on here if I cant see any kids???

Today, at school two, I SAW KIDS!!!   First thing we did was bring LP into a 10-1-2 class with kids his age.  He did great, he said hi, he danced with the kids, did circle time, played in the kitchen.....it was great.  I spoke to the teachers and got a real good feeling, everything here was just like my boy, including Thomas tables in the entrance and animals on the walls.  It was smaller and was not an ABA program, but there were many ABA things I saw teachers doing.  He looked so happy!

So the title of this post is throwing you off right?  Well, my son is a huge pusher.  If you are in his space and he cant verbally tell you to get out of it, he will push you.  It seems no matter how many times we try to facilitate the language and tell him to use words instead of hands......hands win.  While we were in the class I was getting emotional watching my son with the other kids, laughing and playing.  But then I had a moment where I almost cried (tears of joy, may I add).....

Little Boy : Come lets play (goes to grab LP's hand)

Me: (anticipating a huge push....oh nooo)

LP:  No, Stop it! (keeps hands to self)

Me:  Good job yelling no!....I mean, good job not pushing

Now if he can keep this up with his sister and stop knocking her over 5 x a day

It's July 1st

In 2 months and 6 days my first born child will get on a bus and go to school. While of course this is the best thing for him......I still don't want him to go :(. This is one of the main reasons I hate Autism. At 3 years old I have to send my baby to full day pre-school 5 days a week. While everyone else is still home with their 3 year olds, mine is getting daily OT,PT, speech and home ABA therapy.

I'm excited to know that he will learn so much, and learn to socialize with other kids. I'm glad that he will learn to sit at a table with other children with out having anxiety. I'm happy I can get a break and pursue some business ventures.

Things will be ok, this is a new chapter ......but like my son I am very uncomfortable with change.

CSPSE.......

CPSE = Committee for Pre-School Special Education.....I'm not sure how things go in other states since I'm new to all this but I can explain NY for you.  Between the ages of Birth - 3 your child falls under the care of Early Intervention which is run by your county (mine being Nassau).  Lucky for us, we live in the 3rd most expensive County in the country, we have the highest taxes and because of this kids in our area can get amazing services between the ages of 0-3.  When your child turns 2.6 years old its time to start the transition into the school district so that by the time they are 3, the county is no longer paying, but the district is.  Once again I am blessed to be renting in a town with high taxes :)  Before your child's 3rd birthday you must have a CPSE meeting to determine what services the district is willing to provide for your child.

Today was my CPSE meeting.  Now, because I know I was in a decent district and my son had preformed pretty bad on some of his new evaluations I was walking in trying to be laid back.  I knew what I wanted, full day pre-school with at least 5 hours of ABA at home.  I was warned that they probably would say no to home therapy, but I could ask.  I thought the hardest part would be arguing for home service, but no, the hardest part was being read the findings of my sons evaluations.  I knew he didn't do his best, I had read them over and over myself and absorbed it.  It wasn't until a complete stranger read every weakness my son had out loud, page after page that I literally felt like I was having an out of body experience.

When LP was born I knew I would be his biggest fan, but when people told me I would have to be his advocate I really didn't think this was for me.  Somehow during my Out of Body Experience , out came this person I didn't know.  Truth is, I am awkward and I hate to talk in public around people I don't really know about something I don't know everything about.  Today though, I looked up at a bulletin board, saw a  lady bug push pin (lady bugs have always been a God Wink for me), opened my mouth and out came everything I had to say without an ounce of shakiness to my voice.  Somehow I got through it, sounding intelligent and persistent and in turn got full day pre-school with the possibility of home ABA.  The possibility is huge, because they didn't say no.....they didn't say yes....but they didn't say No.


My advice for those parents going through this is to know that its stressful, but in times of stress, the spirit can do amazing things.  You never doubt your child, so never doubt yourself.  You are your child's voice and if you love that child, I promise the words will come out.  Fight forever and never back down.