Wednesday, August 31, 2011

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 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?


Howdy!  I am Frankie and I have no idea what they are about to do to me. 

On Friday, my son and I ventured out to Stony Brook to have our EEG.  It seems that my son has become more use to doctors and could care less now if they touch him.  SO here he was all smiles on the table, he must have been thinking I would buy him another Dinosaur....yea no.  He did lay down and let the lady put on about 3 electrode things on his head.....but then he got curious.  SO unfortunately we did have to swaddle him.  Swaddling a 3 year old the size of a 5 year old with HULK strength is no easy task.  

They finished up and we laid in the dark and little man fell asleep to my fantastic singing voice (actually I sound like a frog but he likes it).  I laid with him for an hour, and felt his little body twitch the entire time.  Now, this test was to look for seizures in his sleep.   I'm not sure how a seizure presents itself in sleep, but literally he twitched on and off the whole time.  Later the Tech put a strode light in front of his eyes as he was sleeping.....and more twitching, bigger twitches.  She told me the twitching could be  normal and it could be nothing, but she doesn't know.  So I should find out soon what that was all about.  

This is what a kid that has been woken up form their nap, and had electrodes slathered in Vaseline just pulled out of his hair looks like.......

Tuesday, August 30, 2011

Not Goodbye, Just See ya Later

Today started the farwells to the 5 women that have been giving my son therapy since March.  Out of the five, I get to keep one.  If you have services like we do, you will understand how these people become a part of your life, a part of your childs life.  Ive heard a quote saying that a childs therapist is their first friend.......and Frankie has Five wonderful friends. 

They have brought my son out of his shell, from the non verbal jumping bean to a adorable little boy who has his moments but can look you in the eye and say " I love you"  Thank you for all you have done and all you have taught him, that he will carry on for the rest of his life.   Thank you for being someone to talk to when I feel isolated in my home.  Thank you for loving my son.  So while we say goodbye for now, I will have to keep in touch.  Thats the person I am, I cant say goodbye forever.  Thank God for email, picture text messages and makes this whole transition easier. 

Monday, August 29, 2011

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 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 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 :(

Thursday, August 25, 2011

Why do I bother?

The question can be posed to many situations.....but I want to know, why do I even bother to clean.  ON Sunday, my husband and I decided to Bleach the house.....ok that's not true, I bleached floors and the bathroom as he did dishes and organized random stuff.  Now I don't use Bleach, I use natural cleaners......but they just weren't cutting it in regards to a deep clean.  So against my "only use natural code" I bought Clorox Clean up..... My bathroom has never looked cleaner.

Here I am four days later and the only thing that is still clean is the bathroom.....and that's only because the kids don't really use it.  Everyday, I sweep up a mountain of food off of my kitchen floor, vacuum a half canister of dirt and garbage off the rug and put away 20 million small pieced toys that my kids got as Gifts.  Sometimes, this happens more than once a day.....actually 3 times a day?   I hate to give up on cleaning, but seriously....these kids are messy

Tuesday, August 23, 2011

Our trip to the MRI

 Monday we had our MRI.  The boys appointment was at 9:15am about 45 minutes away from our house.  If you don't know, I am not much of a morning person.  So up I woke and dragged my little, starving child out of the house and out to Stony Brook University Hospital.  They were really great with getting us settled, and getting Frankie comfortable.  We first met Caitlin, who was the child counselor person, she answered questions and played With the Ipad with us.  Caitlin also gave Frankie a practice mask so he could try to put it on before the MRI to get use to it....i told him it was for Firemen, he was thrilled.  Honestly, he could not have done better.  He waled into the MRI room itself and told me he saw a BIG "O" (the MRI machine).  He even sat on the table near the "O" without crying.  It wasn't until we made him lay down that he started to get upset, and then the mask to sedate him....oh man.  When your child has a mask on you can not hear them scream.....but you can see them scream, you see them scream through the clear plastic and you see it in their eyes.  I didn't realize how sad it was to watch that.....and as quick as it starts, your child's screaming fades away as they go limp.....its not a pretty thing.  

I went for a walk for 45 minutes, got a coffee, got him a stuffed dinosaur.....he has been really into those lately.  When I got into the recovery, there lay my little boy, so peaceful and so cute. 

They did his vitals while he slept and after about 20 minutes I decided I should wake the kid up.  In reality, if I had left him he could have slept for hours.  He woke up and tried to pull the IV out as well as the Pulse-Ox taped to his finger.   The nurse took out the IV and then Avery (our nurse) asked Frankie what kind of Band aid he wanted....Toy Story or which my son says in a slurred voice "Pandas".  Sooooo we gave him Penguins, since they are also Black and white haha.  Eventually he stopped whining and ate some cookies and juice and once he was all checked out, it was time to go home!

He looks thrilled doesn't he?  Well, Avery wheeled us out, and Frankie loved the ride.  When it was time to walk to the car she was hopping so I knew he meds had defiantly worn off.  I have to say the most exciting thing was later that night I asked him to lay down so I could change his diaper and he says "Mama I laid down and take a nap int he O"....I burst out laughing, yea he did take a nap in an "O"  I tried to get him to elaborate but he really only talks on his terms.  He told my mother that they "put a mask on the nose and go in the O, with a mask on the nose, the doctor on the nose".  His language is so funny, I love it!  So the whole experience was not as horrible as I had expected......lets hope the EEG goes as well on Friday!

Friday, August 19, 2011

Our True Identity

With that title, I feel like we are a family of Super a way, maybe we are. I kept names secret because I was keeping this blog a secret for a time. I wasn't sure how family would respond, or if I ever wanted to share it with them. It wasn't that I don't want to share my story with them, it's more that I am a Control Freak. That sounds odd coming from the most unorganized, whatever attitude person, but I do not like to let people know we are struggling. I am controlling and a perfectionist, I didnt not finish college because I was stupid, I didn't finish because I knew I couldn't be perfect.....if i had a c, I withdrew. I don't ask form help, I hate it more then anything, it's just how I am.

So since everyone now knows, I let my guard down, I suppose I can let you know who I am. I am Danielle.....I am 27, I went to college for nursing and dropped out. I rather craft all day then ever go back to school. I make bridal and baby shower gifts and other things through my small business "Lia Couture". My husbands name is Frank, he works for Hurricane Grill and Wings as of 2 weeks ago. We have two fantastic children, Frankie who is my LP and Lia Cecilia who is the most opinionated 11 month old I have ever met. We live in Massapequa Park and hope to some day buy a home here......someday. We are Christians, and regardless of what you believe, I pray for each one of myreaders every night.

It was nice to meet you! Now that I have us out, I may just have to call LP dear sweet little Frankie. Thank you all for your continued support, much love!

<3 Danielle, the NT mom

He Makes Up For It in Cuteness

Today in the process of chastising my child I had to hold back from bursting out into laughter!

Today he had been on pretty good behavior. When we went out he did run around the store like a maniac but, I didn't care much since it was a children's consignment store littered with toys and other maniac kids haha. He was such a little gentleman, he opened the door for me, closed the car doors, just too cute!

My pet peeve lately has been him taking his seat belt off. See I have a large 3 year old who does not comfortably fit into a car seat. At the point he is in s booster which he its in weight, height and age......except he keeps putting the shoulder let behind his head. On the way to grandmas he pulled this stunt which led to me stopping the car on a side street. I turned around and put on my exaggerated mad face and told him I was upset and he need to wear his seat belt to keep him safe. Then I do the whole " why do we wear seat belts?" to which he replies " it keeps you safe". Why I decided to try and keep rationalizing with him I don't know but I told him that with no seat belt he can get a big boo boo and end up at the hospital. ..........

With that comment the tears stopped and he looked at me with HUGE wide eyes( please bare with me but this is exactly how my son talks haha) and said " Mama Avi tricycle hospital......duka guhduwa bones boo boo Avi endica wadda hospital, big boo boo Avi tricycle in duh hospital en duh anduhbus". He went on about the hospital for about a half hour as I tried not to laugh. He was telling me about an episode of bubble guppies where Avi ( a fish) falls off of his tricycle, breaks his tail bone and has to go to the hospital in an ambulance. He kills me when he talks, he is hysterical. Granted this is new that I can actually understand most of what he is talking about. He use to go on and on in jargon and I couldn't even catch one word. I almost cried and laughed at the same time, when I was trying to still be angry. The idea that he put together that getting hurt in the car and going to the hospital was the same as when Avi went to the hospital was amazing. I know they have always said he has had processing issues, this is just great. Today was a great day!

Thursday, August 18, 2011

My Personal Mental Anguish

I first apologize for my down posts and demeanor lately. Mostly it's because I began this blog at a turning point in our lives as a form or therapy and help via the ASD community. I love to share my sons progress, but I also feel it is important to display the negative aspect to show others that they are not alone. When we began this journey, I was very was not till I started this blog that I found others like myself......i thank you all for that!

That being said, I have been in a ton of emotional pain lately. Between school starting, losing our therapists and general anxiety, I'm a mess. I don't know 100% what happened to my son. I know something happened with vaccines. I do think he was predisposed, I know his cousin has it and I remember thinking I wouldn't vaccinate. The other day I found the vaccine book on my shelf, barely touched that I purchased while pregnant with LP. I never finished it because I thought I was crazy, I thought how could I not trust the medical community. I remember thinking the dr was so sweet as she looked me in the eye and told me they were the same shots she would inject into her grand children. So now, I feel enormous amounts of guilt. I had the resources to say no but I listened to everyone else anyway. My husband has complained to me on numerous occasions that I care too much about other people and should just listen to myself. It's the story of my life, didn't go to Scranton bc my ex was there.... ndidnt want anyone to think I followed him. If I went there I would have probably finish my damn nursing degree. Don't go awaY to school at 21, that's weird and your old. Don't go to cosmetology school you need a real degree. You should vaccinate your kid trust me. Arrrggggggg! I suppose in the overall picture of life I am happy, and without those mistakes I wouldn't be here so they were worth it.

Our jobs as the parents of ASD children is now to spread knowledge and to not be quiet about it. When one of my sibling or inlaws get pregnant I will be that nut that tells them to not vaccinate, to get the immune system work up, to get the chromosome tests, I don't want them to ever feel like this. I feel like I let my son play in traffic, and it was my job to protect him. There are nights I just lay in bed with him and pray and tell him I'm sorry if this was my fault.

No one should have to feel like this, I swear, if it comes out the government knew the whole time......I'll lose it.

Behavioral Regression Anyone?

Today was a mixed day. I will start with the good! LP has become less echolalic I have noticed. For a very long time he didn't answer, he just copied what you said. My dad stopped by and was drawing pictures for LP. Grandpa was making elephant noises and LP said " your funny Grandpa Joe!". Sooooo Appropriate!!! He has been saying funny things lately, like on Monday his teacher wore her hair curly like my sister in law does.....LP pointed at her and said " You look like Aunt Lisa!!". We are working on tons of emotions, but he still thinks it's funny when mama is mad. I try to make a mad face when I'm super pissed......he just laughs.

Now the bad.....ok not bad just inconvenient.

We went school shopping at Kohls......and like a typical 3 year old, my son learned to hide in clothes racks. The issue is my son does not understand to come back, nor does he care when you do that whole " I'm leaving you here, bye". He just screams back " bye mama". Out of the stroller he was running away, in the stroller he was hurting his sister. He just laughs when she cries, he hits her in the head, pulls on her's endless. I managed with many looks and nervous smiles, at one point I even blurted out he is autistic to a stranger because I wanted her to feel bad for me. That's so lame, but we were on line and again he was kicking his sister, the lady didn't even say anything, but I had to say something. Next stop.....supermarket. He has been doing so much better, but not today. I asked him if he wanted to push the cart or sit."..he picked push, fantastic. We go to produce and pick out what we need.....and again he flips out in the freezer section. He had a sweater, he wasn't cold!!! He runs away, he ran away again in the store, if I put him in the cart he tries to jump out, he ran head first into a ladies cart.....craaaappp. People say to leave him home, but I want to expose him to as much normal things as possible, but I find myself getting aggravated. I have been a hermit for months, and I'm trying to be brave and venture out and do typical things, but its so much work.

The hardest thing is the nervous looks. Today I felt the women were better, some older men looked annoyed. I younger guy laughed and told LP he was awesome as he dumped a bag of grapes all over the dairy aisle.....I ran ay from that spill haha. I was in a mode that I wanted someone to say something so I could yell at them. His active level is off the charts and I just have no idea how to lower it.

He really is the sweetest boy, I feel horible when I am so frustrated. My mother in law once wished upon my husband that our child would be like him if not worse as a child......her wish came true. We are in such a regressive behavioral rut that it's painful.....he now can talk, but he won't listen.

Monday, August 15, 2011

Autism has given me a's called Patience

Ok maybe I don't have Patience everyday, like the day LP knocked his sister over in the highchair (he saw the rath of God that day). In reality though, I let a lot more things roll off my back.

I was never someone who freaked out externally for all to see, instead I would grow impatient on my inside. I would stress about tiny things, like not being able to shop at Bloomingdales, that I couldn't have a new Coach bag, that my boyfriend didn't call. Though I still internalize my stress the small things don't carry much weight anymore.

Autism has given me The gift to say "so what?". Three days ago my sewage pump in my apartment got clogged......and tons of water flowed out. This water was a mixture of dish, laundry and dirty toilet water. To say it was nasty is to be I looked down at raw sewage on my kitchen floor I thought " well that sucks". Ever so calmly I cleaned it up and for two days was with out real plumbing. In reality, it's just not a big deal.

At this point, not much is a "big deal". I take everyday as it comes, good, bad and ugly. If the child needs to scream in the store, fine, if I can't have new fancy things, ok, if I spill an entire box if Cheerios on the floor........ Deep breaths...I vacuum it.

Thank Autism for giving me patience with my son that crossed into my normal life. It's in that way that the diagnosis was a blessing. It changed me for the good, and for that I am grateful.

Thursday, August 11, 2011

What is a Neurotypical Mom?

What is a Neurotypcal Mom? A NT Mom has a child or two or more on the Spectrum, maybe she even has a husband or a sibling on it too. She is smart and beautiful inside and out. She loves her children both diverse and typical. She wakes up every morning regardless of how she feels. There are days the stress is too much to bear and others that bring great joy. She spends hours implementing therapies and seeing doctors. She becomes a nutritionist who sorts through foods, reads labels, mixes supplements and vitamins to recover her child's gut. She is an advocate for more education and awareness. She worries for her child future but is hopeful her child will shine. She smiles,laughs and cries, everyday is a surprise. She is a warrior whos knowledge and wisdom grow as the years go by. She is there to hold the hands of the parents of the newly diagnosed, to help them through the fog. She is fantastic, she is superior, she is the best thing since sliced bread. I am The Neurotypical Mom and So are You!!

Sunday, August 7, 2011

The Neurologist Take 1

So I have finally gotten around to describing our trip to the Neurologist.  We chose a doctor about 45 minutes from our house by Stony Brook University Hospital, Dr. Gail Schuman.  If anyone on the island needs a pediatric Neurologist, she was great, so down to earth and understanding. 

When we got there I had some issues with referrals....apparently I needed one, as you guessed I didn't have one!  At least we got a faxed over referral from our pediatrician but that was a little stressful to say the least.  We had a pretty short wait and were brought back to the room to meet Dr. Gail.  Mostly she questioned us and watched him play.  He does have a diagnosis but I wanted a medical one also.  She said he had some great skills but wrote up that she also thought he needed ABA.  It seems the school district has decided by watching my son for a whole 30 minutes that they can decide that he does not need any behavioral therapy.  Hopefully Dr recommendation over takes the school districts decision, I will find out on the 16th :/.  So they checked LP's reflex's (great!) and some other little things.

We then got all of the recommended things we have to do.  I have to bring him back for an EEG on Aug 26th, have his blood worked up to check for chromosome issues and lastly get an MRI.  I am very anxious about all of these things but i know they should be done.  Even Dr. Gail asked me why they never did blood work ups on him at the pediatricians to which I had no response.  What got me thinking even more to the lack of knowledge on the pediatricians part is that they KNEW my son had soft markers for chromosomal abnormalities when i was pregnant.  This bothered the Neurologist.....

At my second trimester scan my son has calcium deposits in his heart and a cyst in his brain.....things they told me were soft markers for chromosomal abnormalities.  I refused an Amnio since my AFI work came back that i only had a 1 in 14,000 chance of having a child with issues.  He was born "fine" and no one ever looked into anything.  They said he was fine and those things probably disappeared.  So this is a main reason the Neurologist wanted the blood work up and to get a baseline MRI to see what it was like in there since we have no idea when and if that cyst went away.  So that's our first trip....with more to come.  Wish us luck on this journey!

Friday, August 5, 2011

My other child......My Baby DIva

This is my daughter, I call her Baby Diva.......her real name is Lia.  I will still call her Baby Diva because she is just that.  That is unless her brother is not around. She was born before diagnosis, I believed my son would outgrow his behaviors and weird eye things before she was born......he didn't. 

I feel like I lost the last 10 months with her.  I birthed her, I bonded to the best of my ability.  When she was 4 months old people started coming in and out of our home 17 hours a week.  They came to play with her brother and not her, they interrupted our quiet nursing moments and alone time I had hoped for.  Truthfully, I knew it would be different her being the second, but I wasn't ready for how different.  I just dealt with it and tried to ignore that she was growing up so fast and I was paying more attention to her brother then her.  As she grew she became louder and more opinionated I will say.  I could never understand why she screamed.....she just SCREAMS and complains and throws tantrums.  If this is what its like at 10 months I will never live through the terrible twos and I will run away before she is a teenager. 

A few weeks back though,  I saw another side of this chubby little girl.  My son went to grandmas over night and suddenly I was holding the sweetest baby in my arms.  She played little hand games and climbed on me, she didn't cry, she didn't scream she just laughed.  This is not to say she does not laugh when her brother is around, it's just different.  It was me and her, connecting and laughing.  I mentioned it to my husband and he didn't believe me.  He thinks shes crazy (I'm serious she ALWAYS screams) .  Tonight LP is at grandmas again and my husband says to me " you know, she IS a lot calmer with out him around"  She let her daddy hold her (never happens) and she made cooing noises and babbled.  No screaming.  She went to bed and now I have been sitting here for hours with nothing to do.  IS this what its like to have just a typical child?

Its dawned on me that she really loves her brother and the screaming is for attention.  Its also because when she follows him I usually take her away because I'm not 100% sure he can play nicely with her.  She wants to be with him, she wants to be LIKE him.  They feed off of each other, he screams she screams and visa verse!  He loves her, he hugs her (roughly) he kisses her (hard) but he does not want to play with her.  He takes toys from her and knocks her over, its a constant battle between the two.....and then more screaming.  He doesn't understand its wrong, he says he is sorry, but I don't know what he understands about apologies.

I feel bad for her.  I feel bad because I have not bonded with her the way I did with her brother.  I let her cry in a crib and that's where she son slept with us till he was 2ish.  She frustrates me, she always screams and that makes me so upset.  There is nothing medically wrong, but it dawned on me that she needs/wants the attention.  Imagine people came to your house 3+ hours a day and played with your sibling and not you?  Your mother blocked off your pathway to your brother as to keep you safe (but you dint understand that).  Imagine every 30 minutes your mom put your brother on the toilet and gave him candy and left you alone with some stupid blocks in the living room.

Today I got it.  I understood.  I looked her in the little baby eyes and said I would try harder.  I know this will be her life, her brother will always be different and it will be something she will learn to work with.  I need to make sure she knows I love her so much even when I don't show it.  I am both sad and excited for LP to start school.  In his 3 years on this earth I have attachment parented him and bonded with him and have formed a relationship that can not be broken (he loves his mama <3 ).  I hope that this fall I can start that with her, maybe a little later than with him, but just so she knows she is special too.  My special, Beautiful, Baby Diva!

 Resources and Articles re: Sibling of Autistic Children:

Autistic Kids: The Sibling Problem

The Others: Siblings and Autism

 Balancing Their Needs

Autism and Siblings

Thursday, August 4, 2011

My sons Autism is Beautiful

This is short, its my feelings and its going to be raw.  I let LP walk in the supermarket today.  I let him have the big brother job of helping mommy push the cart.  I knew today I needed to put on my big girl pants and walk with my son instead of tying him to a stroller or shopping cart.  I knew he needed to learn and I knew I needed to put my anxiety away, put my best foot forward and let it happen.  He helped me push and he put things in the cart.  He had his vocal stim moments and most people looked away or smiled and nodded.  I didn't really give a crap what they thought honestly.......

Now I lay here 5 hours later with hurt on my heart and holding back tears because of one woman in the store.  LP was shaking his head in a manic way and having a sensory overload issue.  A woman in I'd say her 50's looks at him, she looks concerned,confused and disgusted , she then looks at my daughter and says "Aw,  but you have the most beautiful baby"  She walks away........

But I have the most beautiful baby?  BUT???? BUT??  I have the most beautiful children lady.  I was still getting LP to relax, and relax he did.  I was more concerned about him that I never let her comment hit me.  He did so well, he even helped me check out the food in the self check out.  BUT.....I have never had someone compliment one child and not the other, BUT?  I feel like she was saying, oh well that sucks that that child is a maniac BUT this one is so beautiful.

Word to the wise, Mind your business if you cant be nice.  Because you don't know how much you can hurt someone.  My son is beautiful, his stims are beautiful, his tantrums are beautiful, his speech delay is beautiful, his jumping is beautiful, his chipped smile is beautiful and his Autism is Beautiful.  It's all Beautiful because he is part of me, he is part of my husband and he is ours.  I always think people are aware, and in my area most people are.....but there is always one.  Be Aware, my Sons Autism Makes him Beautiful.

To Tobay......or To Bay? The Beach!

I live on Long Island, and being from here you encounter many off named towns and such.  I live in Massapequa Park.....can you say that,  a village inside the Town of Oyster Bay.    Its a native American Group I'm told. We rent, I could never afford to buy here, but honestly, I would stay in this apartment forever if It meant I could stay in Massapequa Park.  In regards to the funny names, I live a few towns over west is Wantagh and to the east Copaige , Setauket, Ronkonkoma and some other names you can only pronounce correctly if you live here.  Which brings me to Tobay.

Tobay is a small beach directly south of our house, which takes forever to get to because you have to drive west, then south and then east because that is the only route.  It has 2 restaurants a spray park, access to both the bay and the Atlantic Ocean and tons of Little fish and crabs for kids to collect.   Its actually about a Mile from Gilgo know the one where they found 10 dead bodies, mostly prostitutes.....splendid.  Hasn't seemed to effect anything, still don't know who killed them all.  I asked my husband this morning if he thinks Tobay got the name because someone messed up a sign and it meant to say "TO Bay".....considering its a BAY beach this can be the only answer.  I don't think there was a native American tribe called the TOBAYS. 

We got to Tobay Beach at 9:30 am, tide was out beach was empty....PERFECT!  We had brunch, which was basically just wraps from 7-11 and the kids got ready to run around.  Now this time last year my son was still scared of sand and not big into water.  He would tip toe on the sand and either cry or whine the entire time.  He would only sit in the water if he was on top of me........pardon my physical appearance in this picture I was about 7 months pregnant :)  But yea, he would sit on me like that and make me dig, make me do everything.

Fast Forward a year and my child is dumping sand on his own well as his sisters.  He is also running full force into the bay.  Today he went out so far that i had to get my husband in the water to go get him because he wouldn't listen to us and get his butt back to shallower water.  I mean honestly the water does not get very deep but i had visions of him tripping.  I can only think that making him touch weird things and making him walk on sand and grass etc. payed off.  At the time it seemed harsh to make him uncomfortable, but to see how happy he is now, its all worth it. 


Wednesday, August 3, 2011

Progress every day

The Boy is hysterical today!  Today my son played and peed.....oh and he drew pictures too!  Like I said in the prior post, I was basically home all day.  So we did the potty every 30 minutes and little man went 6 times!  One of those times he actually pooped.....well only a little.  The kids going to give himself hemorrhoids, he things he has to push to get pee pee out.  Tried not to laugh, I giggled a little, all he wanted was candy. 

He played Little People Mall most of the day.  Setting up the people in a car and driving them around.  He is so funny, he told me an octopus was a Pizza man, not too sure where he got that from.  His play skills are coming along beautifully!

Lastly tonight he was drawing with his Magnadoodle and i had to bust out laughing.  First he is Screaming "MAMA, WIA (how he says Baby Divas name), DADDY!" over and over.  So me and Baby Diva head over to his room and he looks at me and says "Mama, Wia, Wheres Daddy?....DADDY!!!!!"  I laughed out of joy, I can not believe he said that!  It made sense, it was appropriate!  Earlier he had said "daddy what happened?" when Baby Diva was crying......I wasn't sure if it was directed at her, but this time I knew.  So he wanted us to come in so he could show us his drawings......which all looked like ovals to us but, he was proud.  I posted them below.....Enjoy the Art show.  I laughed my butt off at the happy camel face!

This is the SUN
This is "Make Dots"
 This is "Camel, Happy Face"
 This is "A Shell"
 This is "A Walrus" ok looks like another oval


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

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

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

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

Tuesday, August 2, 2011

We Had a Great Day, It was a Super Way...... Speeend some time together

 He loves Music!  He loves Dancing!  He loves Singing!  His first real words came after watching Jacks Big Music Show.  He would jump the entire Entrance song and then scream at the end "JACKS BIG MUSIC SHOOOOOOWWWW!!!  Then he would memorize certain repeating phrases and say them over and over.  I always thought maybe it was the music that helped his brain process the words.  Maybe I will never know, but what I do know is that this kid can dance!

THATS FUNNY!!!, no it's not

Today LP's therapist taught him "That's funny".  He shoved a Dinosaurs head in the babies mouth..."THAT'S FUNNY!!"  oh wow, maybe a little funny, Baby Diva thought it was a little funny.  Spitting into the toilet...."that's funny!!!!!"  um no that's gross but ok.  Kneeing daddy in the chest, "hahahaha that's funny!"  oh my!  Tickling LP...."that's funny" ok yea that is funny!

Its good, the boy is getting a sense of Humor!

Monday, August 1, 2011

Heart burn is gone......

Yesterday I didn't mean to sound grumpy or down.  The article I sited made me sad.  Upon thinking about it, it wasn't so much about my son maybe never being recovered, but more about feeling sad that any of us have to go through this.  While I think Autism Awareness is up from the past, it still feels like a silent struggle.  If we moms say its the vaccines people call us crazy, if its the environment we are crazy, suggest any alternative treatment your end up feeling crazy.

I am suppose to believe this is all genetic, I'm suppose to believe I didn't see anything happen to my son.  When I talk about it to tell other parents to be careful, they smile and nod and say things like "didn't you hear they discredited that doctor who said it was the vaccines".  Ugh yes, but then when  child is diagnosed, I am getting the emails and the calls, they then tell me they saw it too.

So truth is, I will love my son no matter what.  He could grow up to be a world class scientist or he can stay three forever.  Forever I will fight for him, forever I will love him and I will do anything for him.  I am happy for the opportunities we have and the strides he has made.  I just wish so many of us didn't have to go through this, I wish there would be some answers.  Answers won't fix my son, but it will give me closure and the answer on what to do differently for my future children.

I love my boy, I do I do I do

Today Left Me With Heart Burn....*sigh*

Its 1am,  I have Heartburn and worry.  I read an article, it made me sad.  Today was rough.   I think i just wrote 3 fragment sentences........haha!  LP stayed at Grandmas last night and we met him at Church.  I brought him to Sunday school like I have for the last month, I sit with him and help him transition from activities.  Some days he whines others he gets angry, today he punched me and kicked me.  It hurts to write that.  

I never have to make him leave the room, but today was horrible.  Today was one of those times I felt I wanted to hide in a corner because people saw my son hit me in the face.  I can say he was all off schedule and had not taken his morning vitamin/supplement mix.....I hope that is what it was.  He has been doing so well, so to see him go back so far hurts, physically it hurts.  I just wanted to leave Church, I really did.  Sometimes I wonder if letting him stay over night at his grandparents is the cause.  They are awesome grandparents, that do the special things grandparents are suppose to do, they take him places and spoil him all day and its great!  My problem is that the minute I re-introduce the structure he looses his mind.  I feel like I would be taking their fun away to make them be so hard on him like I am.  Grandparents should be grandparents and be fun, not be stinky and stern like me.  

I'm sure the rest of the week will be fine, I get discouraged.  Especially reading an article like the link above.  You can work so hard in vain to "cure" your kid and it doesn't always work.  It was a downer, I read it and wanted to think she must not have worked that hard. Truth is, she probably worked SUPER hard, but I guess its true, sometimes you just have to accept your child will not grow up.  I try not to think like that about my son at this point.  I can only assume if my husband grew up to be a functioning adult my son can too.......then again my son has been exposed to other enviromental factors my husband didn't.  

Monday therapists are back, by Wednesday he will be back to himself.