The Sweetest Saddness

Today I took down my folding laundry doors and instead put up a curtain partition.  I could have replaced the doors but I kept hearing how crappy they were so....I saved $20 and bought nice curtains.  There is a point to this....I think.

Today I get a note home from Speech it says "Frankie seems preoccupied with talking about poopie, he didn't have a very productive session since that's all he wanted to talk about.  I took him to the bathroom but he never went".  Well, I say it was appropriate since he did stay home from school the day prior because of well......poop.  Apparently he is still having issues.  I hear bits and pieces but never the full story.  Its getting aggravating, I'm probably picking him up tomorrow.


So children are balancing on folding doors laying on my kitchen floor.  Baby girl has some amazing balance, she looks like a mini snowboarder rocking back and forth arms out staying still.  Frankie runs over from his trains and tries to hold baby girls hand....she protests, I tell him she doesn't want to hold hands.....


Ask him what he wants for dinner 5 seconds later, meltdown begins.  No English words come out, not even poopie.  I assume its a food issue, i tell him when he is quiet i will talk to him.  He screams and sobs....Lia looks on from her high chair happily eating chicken.  This goes on for 10 minutes and the child utters "hold hands".  I'm hugging him and he sobs, "Lia doesn't want to hold hands".  This was all about hand holding, not food for once. I let them hold hands while she ate......he then informed me that he too would like chicken (GASP!...he has been eating cereal or yogurt for dinner for weeks). 


He held hands and ate all his Chicken......then he looks at me and smiles "I'm so proud of you"

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.

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.

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!

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

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

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

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

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

Our First Day of School....yes Our

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

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

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

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

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

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 facebook....it makes this whole transition easier. 

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 alone.....it 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.

Prisoner

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

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

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

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

THATS FUNNY!!!.......no, 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!

Our Atypically Typical Thursday......

Ok it was Typical but, so wacky....I'm not sure what was better......maybe i rather have the Atypical day.  So we woke up and LP had his bowl of cereal and yogurt with the magic stuff mixed in.  That morning we didn't have a morning session because One of the ladies was on vacation so it was just us and the kids.  I spend the morning.....well day actually.....placing my son on the toilet every 30 minutes trying to get him to pee in it.  He is too smart......he was holding it in  and peeing in the pull up after he would sit....ugh Drive me crazy!

A few hours into our day my son decided he was going to play.  He asked me for "duh basket" which is a noodle bucket his teacher brought filled with pasta and small toys.  Well that's when the magic started!  If you follow my facebook I posted a video of LP playing appropriately, its just too funny!  If you didn't see it, here it is! 

Afternoon rolls around and Speech comes and she decides that we should go play with the girl next door who's brother is also one of her students.  I've mentioned before that there are 5 kids on my block on the spectrum, we share therapists.  So we went to play with Girl Next door (GN) who is only 2 months younger then my son....she is really the cutest, and so patient.  GN says she wants to play hopscotch.....that's a new word for LP.  We tell her to show LP how to hop.....which she does!  Now this is the same kid that 2 months ago when evaluated for PT could NOT hop forward.....here he is now hopping behind GN all the way to her house.  Hop, Hop, Hop.......they stop, he looks at her and gives her a big hug.  I  melt, I think my son should grow up and marry GN.  Being that her brother is on the spectrum I think she would be the perfect wife, she would know how to deal with him.....and deal she did.  She let him jump and run away form her, she had a conversation with him (we fed them both the dialogue), it was fantastic.  They ran back to GN's house and played on the swing for a few minutes.  GN's mom is pregnant with baby #4......God Bless her, I don't know how she does it, she looks great.  I can't believe he played, he played with a girl and he had a good time!

Later I brought him to Target and decided since he was doing so well that I would let him walk, and walk he did.  Ok, maybe he hopped, now all he wanted to do was hop, hop hop hop and talk about Auto Zone (he memorizes commercials he sees only once ) and tasting the rainbow.  Hopping around the store saying things in full sentences, "why you do that mama"  "that fall down mama" "ooo That's sister, she crying"  "look mama, shampoo ooo Conditoning (conditioner)  "  I was dying, he was cracking me up, hopping around being a 3 year old.  His behaviors weren't even spectrum behaviors, they were three year old behaviors!!!

Great day!  My only issue was at night I gave him behavior balance.....which I read was a stimulant.  So he fell asleep, only to wake up 1/2 hour later shaking and crying as if he had a nightmare.  He was talking in jargon and doing weird shoulder things.  I don't think it was the medicine, he took some today and nothing happened.

I fell asleep after I wrote the above and now have lost my train of though.....well Enjoy your Saturday!!

The Story of Diagnosis

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

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

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

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

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

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