Wednesday, September 28, 2011

Just when you think it's not working.....

Your kid does something to give you that glimmer of hope. We are 2 weeks and 2 days into Diflucan, I had heard around 2 weeks you can start seeing a difference. So when Monday rolled around and the boy was having issues at school I was some what discouraged. Listen, I'm not putting all my hope into this, because I don't want to be disappointed, but I would like to see something.

So today comes, like any other morning.....except our bus was 25 minutes late. While waiting Frankie saw Keri who was Frankies team leader during E.I., she works with another child 3 houses down. We never see her, well we see her awesome Mercury Sable ( haha), but that child's bus usually comes after ours. Frankie was so happy to see her, he tried to pul her toward our house, but then the bus came, along with the tears. I knew he would miss the girls, but that was a little heart breaking. Off to school the boy went.....and 7 hours later he returned.

He was tired, but he had a great day at school! He ate lunch and apple pie! He went pee pee on the potty 2 times! Then at home he played nicely with his sister and actually ate dinner. The thing that surprised me and made me super excited was his language use tonight! My mom showed him a cake that is for Lia's birthday and an extra she bought. She tells Frankie, "this cake is for lia" and he points to the other cake and says " and this cake is for Frankie?". So appropriate!!! Then I picked him up and he said " you put me down" and when I ignored he said it again! Lastly we watched Diego before bed and he was answering back to the tv. " is this a sloth?"......" no, no, no that is not a sloth, that a monkey!!".

The last hour of the day was fantastic, these are great things!

Tuesday, September 27, 2011

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.

Friday, September 23, 2011

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. 

Thursday, September 22, 2011

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 :)

Tuesday, September 20, 2011

The Incredible Hulk...aka Frankie

Well today was day One on the bus.....a little sad at first, but things went fantastically.  You have no idea....ok maybe you great it feels to not have to rush out of the house with 2 kids to get to school.  I stroll outside in an ugly sweater and glasses with a baby in a poopy onesie and wave bye bye!  I guess my only issue with the bus is I feel he is gone for so much longer.  My biggest issue with school is that i dont feel like i get to spend much time with the little guy anymore.  Right now he is dancing around some piggie banks and talking about Thomas...he is the best.

Now my blog title is referring to my son and his ability to Hulk up at a moments notice.....sigh.  Today my calves and biceps are burning, not from working out, but from holding a 3 year old while he was having blood drawn.  We ended up finding a lab closer that had more then one person on staff....actually when I got there, there was 2 and they called a friend from the Dr office next door to help.  Well long story short we got 3/4 of the blood we needed.  I literally could not hold him anymore, sweat poured from my face as he fought so hard his arms started to turn purple.  We will have to go back but at least i know they are very nice at the Bethpage lab.  I am still amazed though at the strength in this 3 year olds body.  I had my legs wrapped around his, my arms across one arm and chest, another woman holding his arm, another one taking blood and the last one passing her the tubes.....a 4 person job on a 37 lb boy with super strength!

Monday, September 19, 2011

Boo Boo Arm

So I have to get blood work done on the boy to check metal levels and allergies and yeast etc.  Bringing my son for these test leaves me less then thrilled and very on edge.  You can ask my husband about me on edge, Friday morning I lost it, Anything and everything that was bothering me came out and I threw it all in his face, all because of a blood draw stressing me out.

My mother in law took a few hours off on Friday so we could drive 35 minutes away to Great Neck to a lab by the hospital.  The doctor preferred we go near the hospital in order to keep the blood cold or what not.  Now I had called Wednesday to give them a heads up about my sons situation and ask if a special lady who was good with kids would be there.  The woman who picked up the phone chuckled and said "ma am, anyone can handle a 3 year old, you don't need Mona .  We are all trained to do this blah blah blah".....anyway, Mona would be in Thursday and of course that wasn't a day I could go.  Stupidly I assume this bitchy woman was right and anyone could handle a blood draw, so I will go Friday.

I get to the lab and walk in to find a huge empty office with a girl who looks about 19 at the front desk.  No one else is there, i fill out the paper work she looks at me and  nervously says "you can hold him down right?".  To which I reply in a nervous laugh "um I hope so".  The truth is i cant hold my son still, he is 37lbs of brute strength, but in my mind there certainly had to be more then ONE person here to help.  Wrong, one girl who weighed about 100lbs and me.  She pulls the tubes and says "WOW, this is going to be a lot of blood".....did she really just say that?  As though I wasn't freaked out enough that they were taking ELEVEN vials of blood from my child, the person doing it seems shocked.  So here I sat, trying to hold a child who was crying from the tourniquet......she stuck him and he flinched....WELL of course you just out a needle in him.  She gets flustered and says she cant do it.  My son is bleeding down his arm and she cant do it.

I called the main offices and complained about lack of staffing and the fact that I drive that far because apparently ANYONE can handle a 3 year old.  I cried in the car, I cried because I knew I would have to do this again.....and honestly once is really enough with this tests.

Thursday, September 15, 2011

Why Hello Yeast Death

So Day one came and went.....with only a few wonky issues.  On the night of September 12th I gave Frankie the first dose of Diflucan......and waited.  I know that there are side effects of yeast death, those being headache, stomach ache, constipation, low grade fever and behaviors being amplified.

Well, our behavior amplification came in the form of irrational crying and having a HUGE tantrum leaving school.  That Tantrum was worse then anything I had ever seen.  That was day two i saw is day 3.  This by the way is a very slow yeast kill off, he is still getting food with yeast, its just the diflucan doing the majority of the work right now.

Tomorrow we will be going for the enormous blood draw.......I'm not a fan, I'm very anxious honestly

Monday, September 12, 2011

My Future Thank You's

I have both read the book the Secret and seen the movie.  Being a Christian I don't usually buy into too much New Age stuff, but this is different.  The law of attraction, is basically one thing.....Prayer.  When you Pray, you are suppose to have faith that God will answer your prayers...then in turn they happen.  So the secret is basically you ask for something and believe you will get sounds like the same thing to me!  So we are suppose to Thank God (or the universe, which again is the same thing to me) for the things you want as if you have them already.  So here I go, I'm throwing all my Thank Yous out there.  I suppose as you all read it you will be prayer for us as well.  So Thank you!


Thank you for recovering Frankie out of Autism
Thank you for recovering my fellow Autism Mommies children
Thank you for giving me enormous amounts of Patience and Wisdom
Thank you for keeping my family in one piece even when we felt we would break
Thank you for giving us the ability to pay for different therapy's to help our son
Thank you for our school district and their ability to give us the services we want
Thank you for extended family and their support and understanding
Thank you for our wonderful friends and for their support and understanding
Thank you for blessing us with the ability to go out in public and not cause a scene
Thank you for my children
Thank you for our good health
Thank you for my weight loss
Thank you for Tommy and Lisa's new baby
Thank you for Jeanine and Johns new life together
Thank you for giving us great financial planning skills
Thank you for Franks stable job
Thank you for Franks promotion
Thank you for Franks 6 figure salary....yes Thank you for his SIX figure salary
Thank you for Our Very Own House
Thank you for Home Ownership
Thank you for My New Ford Explorer
Thank you for giving me the gifts to make money for our family as an added income
Thank you for my book
Thank you for letting it finally be our turn
Thank you for never letting us go hungry again
Thank you for giving me the ability to help those less fortunate then us
Thank you for giving me the outlet to help other parents dealing with Autism
Thank you for never letting us lose faith
Thank you for giving your son for our sins
THANK YOU, THANK YOU, THANK YOU God for all that you have done in our lives and continue to do.

And there you have it.  I'm saying Thank you For all the things I soon will have ;)

If you have never seen the Secret, go rent it.  God has ALWAYS answered our prayers in one way or another, it may have not been the way I wanted, but I got what I needed. 

Thursday, September 8, 2011

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 :)

Saturday, September 3, 2011

I a Swof....and our adventures of the day

The Boy slept at his Grandmas last night.  You would think that I would like the time alone, but in reality I need the chaos in order to get things done.  The more things going on around me, the better I function.  If all is calm, I will most likely just end up on the couch watching RHWNJ re-runs.

So me and Lia went to pick up Frankie around 10 am.  He was all dressed and ready to go, I sat and talked to my father in law for a little and then Frankie got nutso.  I don't know what it is, but whenever he is at my in-laws and I am there he becomes beastly.  When he is with each of us alone he is fine.  He decided he needed to run at my face and slap my glasses off.....he gets like a bettering ram and just headbutts me in the chest.  I stay calm, ignore.....yea that doesn't work.  I put him in time out.....he has now started high pitch screaming in time out as he bites his fingers.....ignore that....but it hurts my ears so bad and it send Lia over the edge.  He threw some train tracks, I made him leave.

Ran some errands, surprisingly he did great.  After lunch we decided to go on a walk.  Now my double stroller needs air in the tires, so that means we put Baby Diva in the single and Frankie helps me push......well sort of.  He is doing a lot better with walking with me then he use to.  We found an acorn, then we spelled acorn....a-c-o-r-n ACORN!!!!  All went well until the second half of the block where Frankie had to step on every crack and make a certain grunting noise.  Is this OCD????  Every crack he screamed STOP and grunted.  I tried to distract him and tell him what I saw....he'd say I see a car....STOP!  gruuuunt grunt!

As you could guess it took forever to get around the block with this nonsense behavior, but all in all it was pretty peaceful.  I almost died laughing though when he ran over to our tree and told me he was a Sloth (see picture above).  Sammy the sloth is from Diego, and well Frankie was pretending to be Sammy.  I even got his legs up to hang, but he cant hang on long enough for me to take pictures.  I love his little imagination, it really has blossomed!

This evening to quite uneventful except for my insane anxiety.  I'm at an 8 on a 1-10 scale....not sure why, want to stay isolated because the outside is making me anxious.  People don't really understand and I don't expect them to.  Its a gnawing feeling, i usually just want to be alone when it happens, started last night......this will probably last a while.  Hope you are all having a great weekend....till next time!

The Book

Today while I was driving and dealing with a major headache I had an epiphany.

A long long time ago I went to see a Psychic Medium.  I went with a friend who dragged me out because my husband and I had broken up.  I go to see this woman who looks at me and tells me all kinds of stuff that seem to be true about myself.......shes probably just guessing I say.  She then proceeds to tell me to not let my boyfriend (now husband) go and that some chick with a name starting with a "B" would try and get herself into my boyfriends arms.  She then told me, I would never become a restaurant manager because I would have to leave my job.....because I would get pregnant (remember my husband was my manager at the time)....husband would eventually leave also.  We would go on to have 5 kids....I told her in no way would I want 5 kids, 4 max.....She laughs, yea that's what you will say, and when you try for #4 later in life and get twins, you end up with 5 kids.  Forget managing, you will write a book she says.  Things will be hard for a while, but you will be ok.  Go on, get your husband, it will all work out one day.

I walked away from the quack thinking, I will never have 5 kids, and Frank can kiss my ass.  I went on with my life until I found out my co-worker "B" asked Frank to go to the have got to be shitting me.  Needless to say we were back together a week later........and about a year and change after that I found myself pregnant with Frankie and was put on bed rest, never to go back to work again, Husband soon after left as well.  And Life has been hard ever since.

So the Idea of writing a book seemed stupid to me because in reality, I don't like fiction and I never had much to write about.  That is until today.  Because while there are tons of book about Autism, all seem very medical to me.  There is no book that I feel like I could hand to my parents and say here you is how to handle my sons Autism from a Grandparent point of view.

I started writing today while kids are napping........I am going to need some help from my fans though.  If you fall into any of the categories below please email me at:

Please leave your name, email and state you are located

-If you are a Grandparent and you would like to contribute how you felt when your grandchild was diagnosed

-Grandparent who has certain questions you feel bad asking your child about your grandchild

-Parents of Autistic children, how did your parents react to diagnosis

-Parents, what would you like the grandparents to know, that can better help or support you

-for both, just stories about your special grandparent -grandchild relationship. 

Thank you so much for your time guys.  I still think Psychics are quaky though.......that is unless she said i would be a billionaire......I am not having 5 kids!

Friday, September 2, 2011

It Could Be Worse.....

Why Thank you......yes, I know things could be worse.  I should be happy my kid isn't dead, he doesn't have a terminal disease, he is high functioning, he is loving....blah blah blah, yea I know.  First let me say to those who may be reading this and have said those things to me, I do appreciate it.  I know you mean your best, but you have to understand that I do know this.

I am thankful that I have a son who is alive, that loves me and does not have some fatal disease that will snatch him away from me prematurely.  It could be worse, but that does not make my pain and frustration go away.  It does not make me stop questioning everything I ate, breathed or touched while I was pregnant.  It does not make me stop beating myself up for vaccinating him over and over even after I saw odd things happen.  It does not make the tears go away as I see Typical kids his age do things that he does not do.  It does not take the stress away as my son repeatedly runs away, hits animals, kick his sister, scream for no reason , make weird noises, refuses to sleep alone, wont eat on his own, slaps me in the face, runs into the street and is just plain unable to process and retain the idea of danger. 

So yes on the spectrum of things we are lucky.  My son is High Functioning.  I've read articles others have written over and over, just because our kids are high functioning, it does not mean things are easy.  When you tell me it could be worse, its like you telling me my feelings and pain are not valid.  I pray for those who have it worse then me, my heart goes out to you.  What I need instead of these stories is...... a hug, a your doing a good job, hes going to be ok, a how can I help you, maybe read a book about Autism so you can understand, trust what I say and agree with me....just be there.