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"

Good Church News

So in a short amount of Time our Church has raised a nice amount of money which is AMAZING and a blessing. We still have a Long way to go, but I just wanted to Thank anyone who donated.  I do believe in Miracles, whether for our Children, our lives, our Church community of the world.  Miracles happen.....keep on truckin, our prayers will be answered some way or another. 

Below is the original video from My Pastor, Brian McMillan...

Special Announcement from CenterPoint Church on Vimeo.

If you Still would like to Donate to Center Point Church Click Here

We had a good run!

So I had been M.I.A. for a while because things were splendid.  Not perfect, plenty of typical 3 year old annoying behavior, but nothing exciting.  Maybe I should have written about how typical he was being.   I found out a few weeks ago that my son was playing me for a fool.  Apparently he talks, pees, poops, eats a variety of food and drinks out of a cup at school.  All things he does NOT do at home with out an enormous amount of prompting.  Doctor says besides the speech, to see him  now, you would think he wasn't on the spectrum's. Most stims are gone, he just is.

Until he saw me today when I went to his class party.  The teachers told me he never acts like he did....I hadn't seen him act like this since he got diagnosed!  He was SCREAMING at the sight of me, attached to me screaming, refusing food, freaking over everything, anything.  Once we left school he was ok again.  I was angry at him, I don't understand why my mere presence can set him off into such a tail spin.  Why is it that my son is sticking out even in a special education pre-school class.  Maybe that's mean but, I felt so upset.  They tell me all the sweet things he does and how great he is, but when i walk into the room he turns into a mess that I cant fix.



To end the evening we went and got a haircut.  My mother in law wanted to bring him, last time she went with out me and she said it went poorly.  He has always been ok getting a haircut with me alone, but i think the distraction of a favorite grandma kind of gets him all wired up and more freaked out.  His hair got messed up from moving and i had to hold his head against me just to finish it up.  I don't know what happened....3 months ago he got a haircut, no problem.  I feel like crap......I should do dishes, I don't want to....boooo

Our Other Home....needs some help

I haven't blogged in a while, tons going on, Christmas fast approaching.  Things have been Status Quo in Autism World, same Frankie, same funny things, great strides as well!  But today I am stepping back from Autism for a second and talking about another part of my life, a part that is important and a part that could use some help and defiantly some prayer!

Once upon a time I wandered aimlessly still having some faith in God, yet none in organized religion.  I had once been depressed and at the end of my rope and when looking for help in the religion I was raised in I was met with blank stares and not much help, told confessing my sins would help maybe, if not maybe I should pray more.  In desperation I began googling churches in my area, all I wanted was a non- denominational church, something, anything.  To say I was confused is an understatement, then without fail an old friend from High School told me about this Church she and her fiance were attending and how i should go......That Church was Center Point.


I was going to go one weekend, she wasn't going to be able to go that weekend.....I drove past the building, scared out of my mind.....i went to have Coffee instead.  I was so worried about what people would think of me, I wondered if i would do church "right" those fears kept me out till the next week when my friend would be there.


Long story short, going to Church that day changed my life.  My now husband and I had been "on a break" when he said to me....."i want to go to that church with you"......He hadn't stepped foot in a church in 5 years.  It was Center Point that brought us back together, it was Center Point that grew my faith , it was at Center point I got married and dedicated my children.  Even now that it gets difficult for me to get to Church since Frank is working six days a week , Sunday being one of them, Center Point still reaches me with the online videos we can watch to feel connected with our Church even after a few weeks absence.

It is at Center Point I know if I am really in need there will be someone to help.  There is always a listening ear and a helpful hand.  Even recently two mothers have started a "parents of special needs" group that meets on Tuesdays.  It is programs and groups like that, that help so many and we hope to reach more.

We have recently outgrown our home.....a home that I will be so sad to leave, but we just don't fit anymore.  We had been looking into purchasing the building we are in regardless of the size limitations....that is until an opportunity for a new home.....about 10x the size of our current location popped up.  Its more centrally located in Massapequa NY and we would be able to reach so many more people and help those, like me 6 years ago, find their way and find a home Church.

So what I need from my fellow friend is Prayers.....prayer, prayers, prayers and more prayers.  Tears come to my eyes thinking of the potential of this place and the great things that can be done for Long Islands South shore.  By the end of January 2012, we have to have $250,000 for a down payment.  We are asking our church family to pray and give as much as they can to help us achieve this goal.  As my blog followers I am first just asking you to Pray for us (if you pray that is :) )  and spread the word for us if you are in the Long Island area.  Below I will add two links, one to the Church page and another to the donation page if you feel that you would like to give toward our cause.  All donations go straight to Center Point Church Building Fund, nothing crosses my hands.

I know this was a little different then normal, but I would jut love to be able to get as many prayers and as much help as we can!

Church Site:

Center Point Church

Donation to Building Fund:

Give Now

Again, I thank you so much for letting me post this and for any help you are able to offer!

Anonymity?

I know other bloggers went the way of Anonymity.......the question has been posed, maybe I should as well.  I don't know what that means, I don't know what it entails.  Do I just start changing every ones name?  Can my name now be Emily? Do I never post another picture of my children again?  Do i never wrote a negative comment again?....I don't know. 

The Neurotypical Mom is a part of me.....it my other baby.  It wasn't suppose to get big, I though it would stay small like my business site, be a place of 10 hits a day, the end.  Little did I know there were so many like me.  Once things started to grow,  I let those close to me into this world as a way for them to better understand what was going on and to see Frankies progress.

I don't think I have ever written anything so extremely outrageous that I could be seem as a bad mother, wife or person, I have never disclosed surnames on this blog nor anything entirely too personal, but i am now questioning people even knowing my name and region........

I don't regret a word I have written, I have received so many comments and emails from people telling me how I have helped them and said things they think bu have been scared to say, for being honest, for being a ear to listen, for making other moms not feel alone......because yes, it is so lonely.  You don't know the pains and the joys of this life until you are in the thick of it.

My main goal here whether I am The Neurotypical mom or Emily (lol), is to let you know you are not alone on this spectrum.  If you need an ear to listen, I'm here.  A shoulder to cry on, I'm here.  A person to joke with, I'm here.

So should I become anonymous?

Photoshoots and the ASD child

From Birth to about 18 months old my son took the most beautiful pictures.  He looked straight at the camera, hammed it up big time....I photographers dream. 

Then we hit the quintessential 18 month mark where it starts hitting the fan.  I assumed it was separation anxiety or stranger anxiety, I have no clue.  I paid $40 for a Christmas pic i never used because his eyes were red and swollen as he stared into space....not a great Christmas card if you ask me.  I ended up taking a picture at home....which went a little like this.....

Very GQ, this took forever....and he is not even looking....but still this is one of my favorites :)

There are no professional pics of Frankie after 18 months......for a while there were just pictures i took of him when he wasn't paying attention.  I would get one good picture in a batch of staring off into space and nasty face.  I'm not sure what made me think at 2 when Lia was born that he would take pictures better.  I thought maybe with an on site photographer he would bet better......not so much.

Its not a bad picture, its just the only one we have from that shoot because he was completely noncompliant.  Here is Failed attempt at Christmas 2010....He was so Pissed....

And now to the greatest blessing that could happen to a photo crazed parent of an Autistic Child.....the ABA therapist who is ALSO a Photographer!

I suppose this will only help you if you are in the Long Island area, but seriously if you are here and you need pictures, check her out.  Kim started out as Frankie's ABA therapist though early intervention around the same time she began pursuing her passion for photography.  She started taking pictures of Frankie for me as little surprises during sessions, photographs I could never get.....Apparently she told me her secret...she asks him Social Questions lol.

With Christmas Card Season approaching, i knew who I had to call.... Kimberly Jean-Photography :)  Like always, with positive reinforcement, yummy reinforcers, patience and some social questions she did an awesome job.  It takes a special kind person to work with our kids and I don't know if she realizes the advantage she has to other photographers lol.

So if you are in the Long Island Metro area or know someone who is and would like to have photos taken by a professional, kind, patient reliable, awesome, very reasonably priced person who works with Autistic children daily...... Check out Kimberly Jean- Photography on Facebook or at her Website

I never thought I could get a cards this good....THANK YOU KIM!!!

 

*EDIT*

For Some Reason Kim couldn't Comment on here so here is her response:

Kimberly Jean-Photography

Hello there...I thought I was a bit over due for a good cry.... Thank you is all I can say... It has been my pleasure to work with Frankie & teach him how to get through a photo shoot or just a quick snap shot.. He is a remarkable little boy who just keeps surprising me every time I see him! When I first took a few pictures of him to surprise you for Mother's Day, I had no idea how he would react.. However, my plan worked.. I took him outside and gave him simple directions, just as I would in therapy.. then began to ask him social questions to keep him engaged.. It worked!! With some reinforcement, I got beautiful shots that I knew you were struggling to get..
Fast forwad a few months later and It's now Christmas time.. Time to send out those holiday cards.. but knowing that you have a child with special needs, especially one on the ASD, I knew difficulty was an understatement for how Frankie might respond to a typical studio set up photo shoot.... I can't take all the credit though... Yes, I was the one behind the camera, checking my settings, angels, etc. but credit must be given where credit is due.. Keri, my sister assisted me that day and thank goodness she did.. With simple commands again and models given, she was able to help me get some of the most beautiful shots of Frankie & his sister Lia.. Happy Holidays to all! And thank you again for all of your kind words!! Kim

A lot can change in 12 hours

12 hours ago I put my children in the car in a rush to get to church. 10:10 I sat in the driver seat, turned the key and heard "click"....."click"......"click"......Dear God NO.  I have always made the snotty comment to my husband (because his newer car has cost us a pretty penny) that while my jeep is an old tank of a car, it NEVER breaks down....well that was till today.  Running around like a maniac, remember my mothers car is here....10:25, try to jump the car with my mothers(who is away for the weekend) children screaming....let good car run and run....try to turn on mine....NOTHING more clicking.  10:45.....defeat.....Children screaming, The boy has poop and a bloody diaper rash thing going on, back in the house.  11am, there is no way i am making it to Church, where I am suppose to be working in the nursery.....utter disaster. 

Last week my husband broke his cap on his front tooth, we don't have dental insurance.  The looming bill hangs over my head.  When the reality that my car could have more than a battery problem came into my mind.....I lost it. Here we are bringing in 19% less then we did last year, i cant handle this is all I can think.   One of those, WTF did I do to be handed this card in life.  That thought that if you are religious like me, you look to God and say, when is it going to stop piling up on me?  Day in and Day out I pray just to keep things Status Quo and then I pray that if i ever stumble upon millions of dollars that my dream would be to give the money to others...I want to be Oprah, i just want to give it away.  But still with all my good intentions, thoughts and actions I get another layer of stress added on nice and thick. 

Boy is stimmy....oh so stimmy and bonkers.  I was running low of Behavior Balance and didn't buy a new bottle.  Maybe it was the skeptic in me, the doctor said he didn't find those things did much, so I didn't buy more and stopped giving it to him.....MISTAKE.  Between the tree and the lack of DMG and B6 in Frankie's life he was manic, shaking his head like I had never seen......there was about 2 doses left in the bottle and I said screw this test and shoved it in his mouth, I will get a new bottle tomorrow. 

I sat to write a Blog, some horribly nasty I HATE AUTISM and everything else blog, a why me, why did I get every crappy card in this game of life.  I sat here and stopped, its just not me and its not ok.  I put on Church on TV to charge up my batteries that were on about 5% faith, prayed for something, anything. 

So i got into this Mentality

Mom called, said I could use her car (no I'm not 17, but I don't take that car without asking).  Drove to super Kim's house.  Super Kim was one of Frankie's ABA therapist who is also a very talented Photographer....she goes by the name of "Kimberly-Jean Photography".  So Super Kim and her sister Super Keri (also one of Frankie's old ABA therapist) helped take some wonderful pictures of my children.  I cant not express enough how grateful I am for these photos that I would have never been able to do on my own or afford at this point.....So again Thank you Super Kim....oh and Super Keri too for laying on the floor lol.

With spirits renewed, I drop Frankie off at grandmas...she wants to bring him to the Ecology center.  As I am putting my baby girl in the car my father in law comes over and hands me a gift card.  He says "here its $25...its real"  He is a man of few words, I use to live in his house so we have a good relationship but, me and my husband like to joke that he speaks in grunts lol (I actually loled, oh man).  It was awkward, but I was very thankful.  I went to get a coffee with the $5 in my wallet, I was met by a sweet girl who gave me 5 munchkins for free just because the baby was cute.  Hmmm, how cute, i suppose there are good people in the world. 

Yes all these things are small, but little small things do make a difference. Had dinner with the in laws, brought the kids home, baby went to bed.  Next thing I see Frankie at the table, he is eating Goldfish and unwrapping some ribbon out.  I am putting away form clothes and look back over and see that he is putting ribbon on the Ipad saying how pretty it is, I smile, he is so cute.  Fold some more clothes and hear the most excited "Ohhh what a Beautiful Ipad!!!"  I look over again to see this......

Ah yes, it seems he learned how to open glitter bottles.....great job OT!  I couldn't get mad, I calmly said "we don't put glitter on Ipads" and vacuumed it up.....made a very nice snow globe in the canister.

11 hours after the day started in disaster, my husband came home with wings......he came home with wings and his broken front tooth.  He said "guess what?  I think my boss is going to pay for my tooth to get fixed".  What?! I say.  He tells me how boss had been away and didn't know.  Frank mentioned we didn't have insurance, so while he was going to have it fixed, it just couldn't be right now because we didn't have the money.  Later Boss says "lets talk tomorrow about that, we will figure it out". 

12 hours later, I am in a different place.  12 hours ago I threw my hands up and almost said F- this.  I was tired, tired of all this BS.  In 12 hours my faith was renewed.  Even with all the crappy stuff that happens, and nutty behavior, I realized I am blessed, I really am blessed.  I'm happy I just carried on and didn't let today take me down.......because all that glitter.....well That was really just hysterical

I hate Schedules....I need a Schedule ahhhhh

What a conflict of interest.  I hate Schedules because I feel rushed, organization makes me feel good and anxious all at the same time.  Then days like today make it more apparent how much I might need a schedule.

Its seems lately that if even one thing is off, I can throw off an entire day...Like I will today.  At 9am I said I will get the kids ready and head to the store.  Then 9:15 rolled around and one was dressed, the other half dressed and me, well I was half dressed too.  Then I left Diego on so I could get fully dressed and then began to talk to my mother.  9:30 rolled around and now Diego #2 is on and kids are attached.  While Diego #2 is on and I am trying to get dressed, baby girl is rubbing the eyes which can only mean she needs to nap.  If I put her down for a nap I will be home for another 2 hours....if I don't put her down she will A. fall asleep in the car and freak out when I take her out or B. be in a horrible mood.  I need the stuff from the store to do what I had planned today so if I wait 2 hours I will be walking around aimlessly for 2 hours.

This would have all been ok if i just got out by 9 like I wanted to.  I feel like this is that Story "If you give a Mouse  Cookie".

If you don't follow your schedule, your kid will get hooked into Diego, if your kid gets hooked into Diego and you turn it off he will have a melt down, if he has a melt down you will have to ignore him, if you ignore him he will upset his sister, if he upsets his sister you will have 2 screaming children, if you have two screaming children you will get a headache and if you get a head ache you will never get to the store anyway....

I'm playing it by ear.....

Because Autism Parents Need To Save!

Well I hope everyone had a wonderful and uneventful Thanksgiving this year!  Frankie was actually very well behaved, Baby Girl on the other hand.....out of control.  I was suppose to make a second stop at my families house but, kids were so tired once 6:30 hit, it was over....by 8:45 everyone was asleep, even the husband.   

So Now I am home and it is that time that Online shopping begins.  I am not one for Black Friday, I have a small bladder and I just cant wait on lines like that...no thank you.  Since I like to save money and I know every single family, especially those with children on the spectrum can afford to save some money, I'd like to share some of my sites with you :)

Ok first off there are TWO sites I frequent that usually have items discounted 50%-90% off.  My grandmother wanted to buy me a coat so I went on Zulily and found a Kenneth Cole Coat that retails for $209 for $65.....after coupon codes (which I will hook you up with later) the total was $66 with tax and shipping.  Beyond the Rack is the same Concept but with a broader range of items.

OK so after you sign up on those sites and can save up to 90% off on some items you can sign up next for eBates

Truthfully Ebates confused the crap out of me at first.  Basically you search your favorite stores, find them, follow the link through Ebates and get a % back in check form 4 times a year.  the past 2 years I have gotten my Christmas Cards through Snapfish using Ebates and have gotten 20% of my purchase back.  Both of the stores above can be found on Ebates with about 4% cash back...WOO HOO savings!

Lastly for your ultimate saving Check out Retailmenot.

I usually search for free shipping codes at RetailMeNot.  Today I found 20% off of Kohls, free shipping and 4% back using Ebates....I am a Happy Mommy.  I know its a lot of info but I am Semi passionate about saving as MUCH as possible, it pains me to think you can get 20% off and not even realize!  

Get Ready for Cyber Monday and use that extra Money Saved on those Super kids of yours!

Thanksgiving

 

Just want to wish everyone a Happy Thanksgiving this year.  This will be our first diagnosed Thanksgiving which will make things a little easier.  I hate to make ASD an excuse, but it helps to explain Frankie's behavior.  It also keeps relatives from giving me Parenting books for Christmas.....yes that happened.  

I am Thankful for my family, my friends for the things I have no matter how small.  I am thankful for simple conveniences and grand gestures.  I am thankful for those who understand and accept us and for the patience of those around me.  I am thankful to all of Frankie's teachers, therapists and Doctors who have brought him so far in such a short time.   I am also thankful for those in the Autism and Special Needs community that I have become quick friends with here and in life.  Nothing has made this whole diagnoses easier then having others to talk to.  Having people that are going through the same things I am and sharing our stories.  

So Thank you all and may you be blessed with a Happy and Healthy Thanksgiving!

Well Now My Panties are in a Bunch

If you have heard it once, you have heard it a million times.....the grass is ALWAYS greener on the other side.  I feel like this topic was covered already by myself and other blogs when it came to the severity  of our kids ASD.

Why are you so happy?  No why aren't you happier?  I need to laugh, no I need to complain....and then everyone judges each other for it.

Our new Judgement piece of the week.......How can one complain about co-pays and therapy costs and then proceed to spend money on other things?  How can one complain about services when their state covers more then another?  And now we are back at judgment square one.

Regardless of what you made, co-pays are annoying.  Every year they go up....$100 for an E.R. visit in which they glue my sons skin together....Thanks.  $25 every time a therapist comes to the house.....5 times a week.....unless you are a millionaire its annoying.  $4.50 for a bag of cookies that you know cost about $.50 to make...Annoying.  $45 for fish oil pills, $300 for a nutritionist, $200 for Proloquo, $500 for an Ipad....OK I can go on, whatever all these things cost a lot but help the kids so we buy it.......even when we know it cost a fraction of that to make those things or provide those services.  You can go on to argue that you don't get your kids those things because you cant afford it.....well neither can I so, I understand, but I'm not going to pounce on the person who can.

Everyone wants to blame those who have, you know why I don't have more?  Because I dropped out of nursing school and never got past an Associates Degree that's why, that was my choice.  I can't be mad at a family who may have more,  I put myself in this situation and now I have a child who could use more, but because of my decisions I cant give him all of it (hind sight is SOOO 20/20)  So those who have more are still entitled to bitch about how much things cost for Pete's sake, Autism is expensive!

Lastly, the idea that one state gets more then another does bother me.  Like I stated prior on Autism Daddy, the states didn't wake up one day and say, "hey lets give money to Autistic families for services" parents Fought for it.  If your state doesn't cover things, FIGHT for it.  If the next state over has services and you can find a great job there, MOVE.  I would move to the ends of the earth if I could get Frankie services but I am lucky and live in a great state.  In the term of greener grass, sure we get great services but when compared to the rest of the country my family falls right above average income.....In my part of this country, a family of for making under 88k is under poverty level.....I am considered waaaay below poverty level and because that figure is relative and averages out to the rest of the state we get no government help....NOTHING.  A two bedroom cost 2k a month, the average home price is $450k for a small house on a small plot where you will pay about 9k a year in taxes on top of your mortgage leaving you shelling out, after utilities, around 5k a month to live there.....So YES we get lots of services, that we are taxed out the rear for.

And while we live pay check to pay check I still have date night with my husband even if its Dominos and a bottle of wine.  Why?, why spend money I could save?  Because saving a marriage is most important.  Parents of Autistic Children have a higher divorce rate because they forget about each other.  Autism takes hold until you don't even know the other person anymore.  So if I have to skip picking up my coat from the dry cleaners or fixing my dishwasher so I can have a night out with the man I fell in love with so be it.  No one should judge anyone for that.

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.

NO mama

There is a new issue we are having.....its a Verbal child.  In the last week my son has accidentally let the cat out of the bag....he can answer yes or no questions and he has a sense of humor.  Now don't get me wrong I am SUPER happy about this, but it is posing a new set of issues that I wasn't exactly ready for.

Last week I blogged about the first real conversation I had with the boy here.  So instead of doing something I want him to do, instead of just following my lead while whining he can now say "No, I rather play trains".....um ok well NO, Mama rather you go potty.  I use to put food in front of him and he freaked out.  Then I realized chicken was always a sure thing....and then he realized he had options.  I started giving him options and now I get "no chicken, i want Cereal"......you cant eat cereal for dinner, what do you want for dinner "I want Crackers!"....no, no crackers how about Chicken "NOOOOOO, No chicken, 'Nola Bars".  AHHH......I'm so excited we can have these arguments, I really am, I am so thankful to God that he has given my son a voice, but now what?

So now he is having meltdowns because he realized he has options and I wont let him have them.  I'm not sure which ones are harder.  I guess the non verbal ones were worse because I had no idea what the issue was, now I know but I still don't know how to fix it.  I'm off to the super market to find new options, hopefully if he doesn't eat them Lia will.

As for the sense of Humor.......Mr. Smarty pants has mastered matching...letters to word sounds etc. Except now he will pretend he doesn't know.  He will purposely match the wrong things and say "uh.....no that is not a match"(insert hysterical laughing here).... Q and Chicken....THAT NOT A MATCH HAHAHAHAHA!  He's too funny.  At our last Appointment to talk about his development he kept turning the lights off in the doctors office.  He would turn the light off and laugh and say "oh no its soooo very Dark in here!!!"  Fantastic kid, I am trying to discuss your mitochondria.  Eventually I had to stand up in front of the switch which got him annoyed.  Frankie yelled at me he pointed to the char and yelled "No, mama, You sit down, NOW"......Dr. Jassey said " i see he has progressed in language" Lol....yes yes he has.

I guess with anything, this is a new chapter, I'm just on the first page....I'll figure it out, I always do.

My Son the Artist

No, he is not one of those kids thats some artistic Savant, but he does like his Crayons.  I mentioned earlier this week    "truth is you can paint how the world is suppose to be for your kids but in the end they are going to do what they want with it.....like put turtles in a tree and butterflies in the sun :)"

So here they are Flying pigs in the Sun, swimming chickens and turtles in a tree.  

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....

Um I cant help it

Yea, um not like me to be promoting fast food but......I just had a new Burger at Wendy's and I think i died and went to heaven.  I have no idea about the new menu, i didn't even know they changed the burger.  What i did know is the boy likes the oranges and Wendy's will ALWAYS win over McDonalds when I'm in a jam. 

I don't know it was frigen delicious whatever they did to it.  Better content later....now I'm in burger heaven.

I can make you Aware but....

......I cant change make you accept.

I just got done reading a wonderful blog post over at AutismWars which compelled me to write today.  Kids have been sick for about 2 weeks now, its like they ping pong back and forth and my brain is just all over the place.  So when Jenny's blog post from last April gave me inspiration I had to jump on it.

Earlier this week I had to deal with  disgruntled reader who a.) does not believe Autism is a disease because there is no Scientific Evidence Supporting it.  b.) Says we should all think outside of the box and that our kids are NOT sick, society has programmed us to believe that.  c.)  wants me to educate them. So like I said, I can make people aware but I cant make you accept.

This reader is AWARE of Autism, they just don't feel like Buying it..... THAT'S the problem.  People see our bumper stickers, they see the puzzle pieces, they are completely aware of Autism, but will they choose to accept it?

I too was Aware but had no idea until it was on my front door.  I too was one of those waitresses who could not understand why people could not handle their kids.  I too believed vaccine injury was crap.  I too thought Jenny McCarthy was insane.  I too boldly believed nothing like that could ever happen to my child.

Funny that I denied it would ever be me, yet another part of me was convinced it would be.  When I was younger I saw a commercial of a Mom putting a child into a car seat as he looked off into the distance.  As she walk away it said 1 in 150 children will be diagnosed with Autism....and as it said that I kid you not I thought to myself  "That's going to be me".   My question is, What in Gods name did that commercial do other then scare the shit out of me.  NOTHING, it didn't give you one single idea of what the hell Autism was about.

Like Jenny said in her Autism Wars Blog post, we are all preaching to the choir.  We all KNOW, we talk to each other about Making people aware but it needs to go further then that.  There is one image of Autism out there, Rainman type or Non -Verbal.  I never see extremely attractive and charming  3 year old that constantly runs away laughing as i try to grab him by the neck before he runs in the street.

The people that see me with the child described like to believe my child is bad and I am also a bad mother.  I lived a year of my life convinced my child was a horrible child who defied me because he hated me.  I did everything, I brought him to social groups, mommy and me, doctors, punished him in all forms, crap I even went back to work and put him in daycare because someone could do better.  It turns out I wasn't a horrible mother and my kid wasn't bad he just had NO idea what I was saying.  At 30 months old my son had the receptive language of a NINE month old....WTF?  That's Autism????  Lining up the trains obsessively and freaking out when they fall over...that's Autism? Stacking cans is Autism?  Jumping for hours is Autism?  Shaking your head uncontrollably is Autism?  Not talking.....wait the Dr said boys talk later then girls......oh shes an idiot so that's Autism too?

That's the issue, the public is made aware of classic Autism.  A kid that won't look at you, Won't let you talk to them, or touch them.  A kid who sits in the corner rocking.  They never tell you about the kid who cant handle loud noise, the kid who cant handle how sand feels on their feet, the kid who lays on top of you constantly to get sensory input, the kid who cant physically sit through dinner at a restaurant.....i could go on forever.

Someone needs to make the public accept our kids.  They are Aware, they need to Accept damn it.

Beautiful Words

Before Frankie was Diagnosed or uttered a word I always got the same comment.  "One day he will start talking and you will never get him to shut up.  You will long for the days when he didn't talk"  You have no idea how many times I heard that.  I remember being pregnant and overly hormonal crying, thinking I would never know what my son sounded like unless it was in nonsense Jargon, grunts or screaming. 

I wrote emails to people asking what I was suppose to do, where I was suppose to go since at that point I had abandoned out pediatrician, who was still on the wait and see bandwagon.  Most never got back because I was contacting the wrong people.  I remember being 8 months pregnant, sitting in the dark, convinced my son had Autism and it meant no future.

I had no Idea of the ins and outs of Autism.  I knew what I read on Web MD, what the doctors said that vaccines didn't cause it etc. etc.  So I kept getting him vaccinated and in January I finally had the evaluation done.  He knew how to say "Ready, Set, GO".....that was it. 

I'm thankful for the psychologist because he did let us down easy, and did give us hope. He really wasn't one of those types that coldly said Autism and walked out of the room to leave you like you just got punched in the stomach.  I think because of him I wasn't as depressed as I could have been.

After about 3 months of intense therapy, Frankie started one word comments, sometimes even 2.  In recent weeks he has started strings of sentences.  Today he said "I see Andrea, I go to school?"  to which I sadly had to say, "No we have to go to the Dr.".  We pulled up to the office and he said " mama that is Dr. Jassey office" 

He is amazing, and I love hearing his beautiful words!  Even when they are used improperly.    I cant help it, I love to hear him.  Granted its only been a few months, but I could hear him say Lia, Lia, Lia, Lia Lia.....all day and not care.  He can repeat the same question over and over or tell me his " feets is broken" when his shoe fell off for hours....it wouldn't matter.

I start thinking the non stop talking may eventually get to me.   But then I just have to bring myself back to that place when I thought he would never utter a word and I remember I am blessed that he can annoy me.

I'm Dr. Awesome......

and So is Jenny McCarthy.

I got my first nasty Email today.  From a girl who was an acquaintance in HS and a facebook friend later in life.  It got me thinking, which makes me want to set somethings strait for my "sycophant army" as she put it. 

First, I do NOT put out medical advice.  Any medical things I put out there are things my son is going through with the instructions of a good old MD.  This is not meant to offend anyone on the other end but I am not using a DAN! doctor at the moment, I am using a regular doctor that is seeing the light.  All doctors I have been to have been regular specialists who have no ties to Biomedical approaches, they looked at my sons blood work and said "Mrs. NT MOM this is what we have to do".  So, I do not think I am a doctor, nor am I playing one on TV or Blog land.

Second, I am not pimping out my child.  I have this nifty little Tab up in the right hand corner, it says Donate.  I put it there, because I saw on MANY other blogs that inspired me the same tab.  Never do I expect or require anyone to Donate to me.  My husband works very hard and I in turn work very hard to save money and live frugally so that we can pay to live and I can stay home and raise my children instead of having a stranger do it.  Do we struggle, yes, but do I blog asking for money NEVER...and I NEVER will.  I apologize if that tab ever offended anyone, but that was not the purpose.  As parents of children on the Spectrum, you understand that many things are not covered by insurance and I figured if a Bill Gates type one day stumbled onto my blog and liked it well.....the option was open.  So again my apologies, I never meant to offend.

Third, I do not lock my kids inside.  Holy Crap, that was taken so out of context.  This is when I get annoyed at those who "aren't living in my shoes"  There are just days where it is just not super awesome to take your tired 3 year old out in public so he can have a melt down and have people look at me.  Apparently according to this person

"you and your sycophant army can't deal with the reality that parents are responsible for their children's behaviour whether they're dying of cancer or they're just starved for attention because mommy cares more about broadcasting every moment of her life on FB while hoping the kid shuts up and reads his Ipad instead of menacing his baby sister."

Me and the attention starved children, see how he menaces his sister......um yea

 Its like no matter how hard people try to explain what life with Autism is, people still will not understand.  I spend so much time with my son its not even funny, the kid sleeps in my damn bed most nights.  Of course we are responsible for our children's behaviors, Deal God, He has  BEHAVIORAL THERAPIST for Gods sakes, all our kids do!

SO for those who think I am neglecting my children to Blog, I am sorry that you misunderstand.  I'm sorry that you don't know that I blog when they go to bed and finish them in the morning.  I'm sorry you don't realize my son is in school 7 hours a day and my daughter takes 2 - 1.5 hour naps so I have a lot of down time.  I'm sorry you don't realize that he Ipad is hidden on top of a Armoire and only used at certain times as a reward.  And that I chronicle my sons life to help other people.  I'm sorry I offended anyone, or hurt peoples feelings, that's never my intention.

I'm going back to my peaceful little place, your welcome in whenever, we have cake pops and will embrace you with Love, night folks!

Our Special Children and the Bonds that Bring us Parents Together

No one has ever said "Your Blogging is silly Danielle" but my husband has made comments like "how can you tell me you didn't have time to make dinner you posted 4 blogs today" (lol)

If there is anything I could ever have taken away from this Blog, its the beautiful Nature of Parents with Children who Have Special Needs.  Whether is be Autism or Cerebral Palsy, Downs Syndrome to Krabbe Leukodystrophy.....we all have a bond that makes us a community. 

A year ago, I stumbled upon the story of Anaya.  I was on a page that was for Breastfeeding Mothers and there they had posted a need for Breast Milk for this dear girl.  Anaya suffered from Krabbe Leukodystroph Disease,  which is a rare, often fatal degenerative disorder that affects the myelin sheath of the nervous system.  I had wanted to pack up some pumped breast Milk and ship it to Canada, but seeing that I couldn't even pump enough for my own child, it wasn't really possible.

I followed their story, praying for some sort of miracle, I watched in March as they thought they were going to loose her, and that tough little girl pulled through it.  I watched her turn two in August and thanked the Lord for letting her make it to that Milestone.

A few days ago Anaya's mom Camara had posted that they were sure Anaya had Pneumonia and were bringing her to the hospital.  Unfortunately, it wasn't Pneumonia, Anaya's lungs had stopped working and she needed to be on life support to stay alive.  The decision had been made by her parents to take her off the life support and let her pass.

24 hours ago I learned of the situation and started praying.   I posted a photo of Camara holding Anaya getting ready to soon let her go and so many people sent their prayers  In those 24 hours I have seen Anaya's Facebook group grow by over 2,000 people.  In 24 hours I watched people out pour love to a complete stranger and in about 1 hour  I watched an Autism Mommy Frantically search for a Photographer though Now I Lay Me Down To Sleep to volunteer to take Pictures for Anayas family as they spend their final moments together. 

Anaya is now grown her wings, but it was a beautiful gesture by "Autism is a Trip" that made me realize we are really a community, and a community of good people at that.   Wendy and Jessica (who took the photos), you have wonderful hearts!  You restore my belief in humanity.  We are a community and I'm so happy to be part of it.

Rest in Peace Sweet Anaya, may you be with the Angles......

Green eyes, yeah the spotlight, shines upon you

Once Upon a time, a long long time ago, I listened to music quite a lot.  I don't do that much anymore because.....well I don't know why.  Maybe because old music brings me somewhere sad, somewhere where I had different dreams and a different outlook for my future.  I have a hard time with nostalgia, its hurts my insides....even happy times hurt my insides so I try not to dwell on the past.

Anyway, today I went back and listened to one of my all times favorite songs "Green Eyes" by Coldplay.  In my youth I selfishly thought that any man who would be worthy enough to marry me  would have to psychically know I loved this song and he would proceed to propose to me with it (I have green eyes, if you couldn't figure that out already).  In my 8 years of date, not one guy was psychic....or even liked Coldplay enough to have a clue.  Regardless this song has stayed my favorite.

 14 months ago I gave birth to a little Green Eyed baby girl.  Today after reading the lyrics i realized.....this song i not about me, its about Lia.  It was never for me, it has always been a song I loved because it would be for her.  Ah, Baby Girl, Shes insane, but she is mine :)

Honey you are a rock
Upon which I stand
And I come here to talk
I hope you understand

That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you

I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you

Green eyes

Honey you are the sea
Upon which I float
And I came here to talk
I think you should know

That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you

Green eyes
Green eyes

Ohohohohooooo
Ohohohohooooo

Ohohohohooooo
Ohohohohooooo

Honey you are a rock
Upon which I stand

Diary of Thursday

I'm frazzled today.  Four blogs in one day, I'm on FIRE!  Ok well 2 of them were relatively short and didn't have much thought behind them.  Just random blurbs of my thoughts and events.



Today I am pondering my new personality that has emerged in the last 2 years....the one where I became a Hermit.  I use to like to be everywhere, out and about, center of the mess that is youth.  Now I am usually alone with my thoughts, spewing them onto this Blog.  I'll say it a million times, THIS IS MY THERAPY.  If i had the insurance to cover it, I would defiantly be in therapy.  Actually, maybe not.  I'm not depressed, or unhappy, I guess I am just not being the person people expected.  Again that is my own perception, no one ever said that.

My husband wants me to get friends, I told him no thank you I'm happy with the few I have.  He tries to push me to do things, but I rather not.  Leaving the house is work for me.  The idea of leaving this house makes me feel like I am walking through a pool of caramel......its that much of a chore, I literally feel it all over my body.  

I feel like I am doing my children a disservice because I'm not running around to play dates, mommy and Me's, grandparents houses, the park, the zoo, the where ever else you bring kids......blah.  I can't, its hard enough in my HOUSE, I cant take them out. 


I don't make calls, I have nothing to say.  UGH, its sad, I mean I literally have nothing to talk about.  Unless its about Autism, the kids, baking or my sister-in-laws up coming wedding (very exciting, gives me something to look forward to doing) I have nothing to talk about.  Again, its not personal, its not that I don't miss everyone, I just don't like talking about nothing.  Then when Autism comes up I feel like an encyclopedia rambling off figures and stats and info that makes peoples head spin.....then it gets weird. 

I am tired, I m vegging out, waiting for my husband to get home...blah. 

Is Three a Charm?

No, I'm not pregnant, nor are we even talking about getting pregnant.  The thing is today I had a mini melt down as I was packing Frankie's summer clothes away to be shipped off to someone else.  In the past year I have just gotten rid of clothes and stopped saving them for "the next baby" like I use to.  Even with Lia, I kept the things i thought were cute and shipped the rest away to family who had a baby girl.

So in the mess of emotions and anxiety I called my mom and said I'm keeping the last season of clothes.  She said she would store them, basically I have boxes of clothes stashed in various relatives houses with the cute items I cant let go of. 

Then the emotions came up, should we ever contemplate another child in the future or should I throw in the towel.  At 27 and 29 we didn't feel we should make a permanent decision, but with one child on the spectrum and one with a Diva attitude (I kid, sort of) should we chance a 3rd?  And if that 3rd was a boy, who grew to be typical, who grew to be the things we dreamed for  Frankie, would it feel like we replaced our first son?  And am I a horrible mother for assuming that Frankie wouldn't grow up to achieve greatness....

A Ball of emotions, that is me today.  This happens every time i switch the clothes out.  I don't know what it is about them.  I'm not a psychic of any sorts but I can hold things and it will flood me with emotions and memories, i just cant let the clothes go.

I'm keeping them, time will tell.  Right now, i just don't know

Something Wonderful Just Happened!

I must blog about it because it is that Important and Wonderful.  I was going to just Status update, but no, too Important!

I just had a Conversation with my Son!!!!

Italics, Bold and Underlined!

Me: Are you Wet or Dry?

Frankie: I Dry

Me: Do you want to try pee pee on the Potty?

Frankie: No

Me: Frankie, lets try Pee pee on the potty...

Frankie: NO!  I rather Play Trains

Wait what?!?!  I didn't even know "I rather" was part of your vocabulary!  Where the F did that come from?    Now he is narrating the beginning of Thomas and Friends.  He is Fantastic, Oh happy day!

Thoughless Thursday #1

How Negative, I know, but I suppose I can make light or dare I say Joke about the BS I hear from strangers and sometimes even people I know.  So here it is, The First Thoughtless Thursday Comment

"Did you Ever think of trying Time-Out"

Really?  No I NEVER thought of that one.  I must have been living under a rock the last few years. Super Nanny?  Who's that?  What a novel idea, put the kid in a chair and isolate him and all my prayers will be answered.   

Yes, I tried it.  No matter how many times we sat in time out, the behavior occurred again.  He never got it, it never clicked that Time out was bad.  If he hates time out, he could just slam his head against the step he was sitting on......repeatedly.  Now he LIKES time out.  He sits there and smiles.  

Thank you for the Pearls of Wisdom stranger!

Seeing differences

I think one of the oddest things for parents of children on the spectrum who have typical children also, is seeing the difference.  Here is one difference I noted about 5 minutes ago.  My son after about 10 or 11 months had no real interest in toys or any attachment to them. 



My daughter is attached to her "baby" and needs to sleep with "purple puppy".  She cuddle her toys and plays with them appropriately.  My son on the other hand would have rather stacked cans and line up trains.  He once loved his "puppy"  loved it so much I paid $20 on eBay to get an identical one just in case.  Then one day, along with other skills, he lost his love for "puppy".  Puppy and his twin were packed away as he enjoyed lining his trains up much more then playing with anything else. 

Well, puppy has found a new home in a new crib.  On a happy note, the boy plays much more appropriately now.  though puppy has been passed along, he now sleeps with a much more grow up stuffed animal...."Dino" LoL

Here is an "I Hate Autism" kind of Post

I hate Autism because its causes me even more difficulty getting a 3 year old to eat.  There are days I want to throw my hands up and tell him to starve.  I throw enough food out in a week to feed a Family of 4.

God forbid I run out of chicken nuggets (like I did today)  my son won't eat.  He will eat about 1/2 a cup of vegetables and scream for an hour over the thought of eating something as Insane as a Hot dog.  From a therapy standpoint I should ignore the behavior or just keep at it till he eats, but we forget that Daddy is not home at dinner time and the one year old in the high chair will start chiming in the minute the boy starts screaming.

Nothing is more awesome then a 3 year old and a one year old screaming in harmony!  SO he ate some vegetables after practically vomiting up the finger nail size piece of hot dog and then i dismissed him because I cant handle the screaming and throwing yourself off a chair thing anymore.

Little Miss Piggy calmed down and ate her dinner, plus Frankies hot dog and his vegetables......

Aren't We On the Same Team?

I will State this again.....WE ARE ON THE SAME TEAM.

"Teamwork is the ability to work together toward a common vision. The ability to direct individual accomplishment toward organizational objectives. It is the fuel that allows common people to attain uncommon results."- Andrew Carnegie

Our objective is to Spread Autism Awareness,  to Open the eyes of people that this is an Epidemic and To SUPPORT each other regardless of each persons personal beliefs.

I have said it before, I started this Blog for me, I was having a selfish time and needed it.  As time has gone by, I have come to realize it is more then just me here, its us, its WE!   As with any large group of people, there are many different personalities, opinions, view points and attitudes. My ideal perfect Autism World we could all be one unit, a unit that can spread Awareness and get the services we need, heal our kids (partially or fully), find out what is happening and see if we can stop it. 

There are many school of thought, It's the vaccines, its genetic, its environmental, its better diagnosis, lets "cure" it, lets recover them, we should leave them the way they are, try Biomedical, ABA is the only way, ABA is robotic, Naturalistic play is best, it goes on and on.  Apparently there is also a rift in how parents should cope with Autism, Laugh, Cry, complain constantly, be depressed, be fake, Be real, be honest, cover it up.

As Voltaire said     "I may not agree with what you have to say, but I'll defend to the death your right to say it."

Everyone is entitled to believe what they want to believe and handle it in the way they see fit.   No one is better then anyone else for what they believe or how they cope with Autism.  No one is the Autism Authority here, not me, not you , not the guy across the street, no one.  


I challenge you to say enough, enough with the back and forth, enough with the bickering, enough with the passive aggressive behavior towards one another because guess what We Need To Work TOGETHER.  What works for your kid may not work for another kid, but that is not the issue at hand.  

The issue is getting our children more services, to get Doctors to open their eyes and work with us to help our kids and Stop telling us its all psychological, to get people to realize our kids are not misbehaving but have a disorder, to get insurance companies to pay for therapy and medical interventions for our kids, to raise money for families who are struggling and going bankrupt because of Autism.....there a a million more Common issues we have that we must join together and fight for.  


SO enough with the debating on whether or not vaccines caused Autism or if a parents Laughing about Autism is counterproductive for a parent. I hope we can work as a group, from one end of the spectrum to the other and everyone in between.  Our kids deserve it and so do we. 

Somtimes the Best Therapy is No Therapy

Ah, bucket foot.  Yesterday had to be one of the better days we had in a long time.  Nothing fancy happened, we sadly missed a church and our friends First Birthday Party to be quarantined in our apartment for the day

In my house with two snotty croupy kids, no school, no therapy, no help, husband at work......just me and them.  In the morning I was nervous to be honest, I wasn't sure what every ones behavior was going to be like, and I didn't want to try and guess.  But honestly I was pleasantly surprised. 

Before Frankie's Diagnosis, things were not very structured for us.  We ate whenever, slept whenever, hopped into the car and went on little trips to the mall or the park etc.  After Lia was born and then after Frankie started therapy, things became very routine, very structured,  very boring if you ask me.  At this point, my son gets up at 7am, eats, gets dressed, plays with his sister, gets on the bus at 8:15.  He gets home at 3pm to be met by a therapist on Mondays and Thursdays for an hour..... at 5pm we eat at 6pm we bathe at 6:45 Lia is in bed by 7 Frankie is laying with me on the couch and usually passes out by 8.

That's our day, I feel more like a warden then the fun mommy I use to be.  Implementing behavior strategies, trying to get him to eat new food, refereeing between 2 kids (where the one year old is nastier then the 3 year old). Recently on Friday nights Frankie has been staying at my mother in laws over night and then by Saturday I have been trying to go see my dad 30 minutes away or we have a party or wedding to go to.  Sundays are church and then my Mother in law wants to take him usually after (we use to live with them so she does miss him a ton).  Unfortunately, though I love sending him to see his grandparents, I feel like I personally don't get to spend any fun  time with him. 

I realized this Sunday, where we were all sick, that my son is a pretty funny and amazing kid to spend the day with.  I think some days, even though routine is good, I need to step back and just have fun with him.  The amount of functional language he has is great! I had no idea!  I think the funniest thing of the night was when he asked to "clean with sponge" the whole kitchen.   My other favorite line was when we got out of the tub he runs around screaming "Don't make poop on the rug!" . 

I need more days like yesterday.  Fun filled bucket foot, sponge cleaning, NO POOP on the rug kinda fun!