Just let me whine for a minute

I am so tired.

A is getting worse not better.

He is having fits every week, when it used to happen far less. 

Halloween was so frustrating.  He used to not want to wear costumes...now he couldn't decide on what costume to wear.  Originally he was going as General Grievous from Star Wars....he says Jennifer Grievous...lol.  Then he changed his changed his mind to Darth Maul, just so he could get the Darth Maul light saber, which he had a full fit over in Target about. 

Of course Party City was out of Darth Maul by the time we went shopping, which was the last minute of 3 weeks before Halloween.  The snarky punk getting costumes made a face and said I should have bought costumes at least a month before....whatever...

The only costume A liked, that we could get in his size was a pirate.  Ok a pirate.  Well now he wanted a pirate sword and the Darth Maul light saber....Fine.  I give up.  Life is too hard, I will spoil him and buy him things I know I shouldn't.  Go ahead judge me...

Of course we get the light saber home and it is broken!  Of course by the time I get back to Party City it is an exchange only policy, and of course they are out of the Darth Maul light saber!

Of course the first time he uses the pirate sword it breaks.  Of course this happens in public, and he has a meltdown over it.

I am so tired.

Before Trick or Treating last night we headed to my mom's for her to see them dressed up.  She gave them each a cool cup, a flashlight, and tons of candy.  A wanted his flashlight.  Of course it doesn't work.  Of course this throws him into a fit and now he doesn't want to go Trick or Treating at all.  Well I am sick so I really can't handle taking the other boys Trick or Treating by myself, nor do I really want to stay home with a fussy A by myself.  So no A, we are all going Trick or Treating!

Then we head to Target to get A another pirate sword, because he had to have one.  The $5 sword wasn't what he wanted.  The $20 sword however was great.  Wonderful, now let's go. 
Wait that was too easy...here let's have A have a fit over wanting to buy toys as well.  He wanted presents for Halloween.  I tried to explain that Halloween is not a present holiday.  Well anyone who has ever had an argument with someone with Autism/Asperger's can feel my pain...because after 20 minutes he is still not convinced he doesn't get presents.

Finally we are Trick or Treating.  Or rather K and I are Trick or Treating while A hides by the stroller playing with his sword.  He is too shy to ask for candy or say Trick or Treat, but every now and then he does want to show people his sword and costume, which is really good.

I am so tired.

Today there is no school due a very strategically placed Teacher/Parent conference day.  A has asked no less than 5 times about a toy that he wants...not for Christmas, but today.  Again I keep explaining to him that he will not get anything until Christmas...to no avail.

I am so tired.

I have been hiding from life lately.  I am behind on work, housework, everything.  I am depressed. I just want to climb into bed and rest, or get lost in a great book...another world where there is no child who needs me to be more patient with him.  A world where I am not angry with people for not getting it. A world with no bills, or dealing with finances.

I am so tired.

Decisions...

So I need to make certain decisions.

How am I supposed to know if I am making the right ones?

Which path to choose?

I have been really down this week, and I think if I can get past certain decisions I have to make I will feel better.

I am going to start batch cooking again soon...I have been lazy since back from Disney....

In other news...K, my oldest, is thriving since we got him on ADHD meds.  I never wanted to medicate my child, but the difference is so great.  He is making great grades in school!  He can sit still (enough) to learn and remember, his penmanship is legible, and he looks forward to school!

However, A is not doing better.  We put him on an antidepressant and it did absolutely nothing.  In fact some of his behaviors got worse.  He developed a new tick...he now makes a weird sound in his throat when nervous or anxious, which is ALL the time... He doesn't want to go to school anymore...not that I can blame him.

I got his interim report and for the Reading section it said "Child is very below average, contact teacher"  Well DUH!  He is mentally 4 years old, and they have him in a regular 1st grade class for reading...kmngrwsnm;pweampfnio....that was me hitting my head on the keyboard!

Still haven't had an IEP meeting....still no speech therapy....he came home and told me that he can't eat luch at school because by the time he sits down it is time to pick up...oh and they told him he can't eat yogurt for snack time...owejiowfeoHNIROI...again my head banging in frustration! 

Blogging LIVE from Disney

We are here!

I know, I haven't posted much in a while.  I have been too stressed out since Hurricane Isaac.

Ok so real quick for this morning....

A is on a semi hunger strike.  I knew he would do this, and I am not fighting it or forcing him to eat.  He says his tummy hurts, and I see that look in his eye.  The look of not knowing where he is and being terrified about it.  His moods have been OK.  Much better since we got in and he was able to buy his first toy last night.  A Star Wars gun.  It is really cute to see him and K, my oldest stalking around with their toys gun shooting imaginary dinosaurs and Storm Troopers...

Hopefully he will eat something today.

Oh and as a PS...
We have been here less than 24 hours and already I saw an irate women tell her son that she "really couldn't even stand to look at him right now!"  He looked about 10.  Now I don't know what happened right before that, but minutes later she told her daughter off for playing with a rock...she might have been 8.

Come on lady you are on vacation at one of the most expensive places on earth...try to have some fun!

Oh and PPS...
We met a women with her mother and two daughters.  One of her daughters was in a wheelchair(the kind that looks like a stroller so you know this child has been in it for a long time).  After a discussion we learned that her daughter had brain cancer.  She said they were having a great time, but some people gave her looks when she and her family used another entrance to get on a ride...a look that reads "must be nice that they get to cut all the lines"...The lady went on to say that she felt like telling them she would gladly trade her daughter's brain cancer for waiting in any line, any day...

Open House

Tonight is one of those nights that I wish and wish and wish my kid was not in Special Education...

Open House at my kids' school was tonight.  Most of it was been there, done that.  A couple of changes that sort of irk my nerves, but nothing major.  ie New rule: if a kid forgets their lunch at home, they are SOL.  You can no longer bring it to them/to the office for them...supposedly it's all about holding them accountable.

We went to our oldest son's class first.  His teacher is very nice.  I told her that we are taking him out of school next month and that I would fully explain in an email.  She gave me a knowing smile and nod, and said that K has been telling her all about it!  I asked her how he was doing and she said she would fill me in when I emailed her.  I figure it can't be anything too pressing since she didn't want to schedule a conference like she did with some of the other parents.

So we moved on to A's teacher.  Let me stop here and mention the goings on of A's first few days of school.  As I mentioned in another post, I brought him to his 1st grade class on the first day of school.  I told his teacher who he was and that he should be spending some time in the Special Ed room as well as her class and that we need to adjust his IEP because he needs to start Speech Therapy as well.

Well, as the week goes on, I ask A how school is doing.  One day he comes home and tells me "School is OK, but I didn't get any candy today..."  I asked what he meant, and he said "Teacher said if we make our numbers we get a candy, but I couldn't do my numbers, so I didn't get a candy."  I asked him if he had someone helping him (I even referred back to last year's Aide) or if he asked for help and he said "No one was helping me, I asked for help but no one was helping me..."

Um...What?!  He is supposed to have an Aide or Para....why would she give candy to some and not all...why is she giving out candy at all...why would she single out a SPED student???

I then ask if he has been going to his other class and he says "No I spend all day in Mrs----'s class.

Again WHAT?!  A full 7 hours in a regular 1st grade class when my son is mentally about 4-5 years old!

Then the straw that broke the camels back...the note cards.  In 1st grade they write note cards in class so the kids can practice certain spelling words.  Well with no help this is what A came home with

 Those I could make out...these below I could not...

Now look I get it.  A doesn't "appear" different from most first graders.  However, as soon as he starts talking you can tell that he is a little behind.  His has an IEP.  Plus I sent his new evaluation in the first week, so it's not like the school doesn't know!  Per his homework, he was to study these cards for a test in a few days.  How were we to get him to study if we couldn't even make out what they were supposed to be?!  Not to mention A can barely write his letters and numbers, let alone words on his own. 

So I complained to Facebook, and waited to call the teachers until I was much calmer.

I call Mrs---- the 1st grade teacher, and leave a message.  She calls me back and says she doesn't know why A is in her class all day, but she will contact the SPED teacher and find out.  She calls back later to say starting the next day A will be in the SPED class and 1st grade class 50/50. No explination, no further instructions, nada.  OK

A keeps coming home with regular homework, no modifications...so we have spent every night painfully getting through this work.  The only way A can write a word or whatever is to have us write it out for him, then below that make dot outline or write it in highlighter and have him trace over it.  After every 3 or so letters he starts "Idontwannadothisitstoohard" and usually goes limp and falls to the floor a few times.  This process takes about 1 1/2-2 hours!

So I had really hoped to talk to his 1st grade and SPED teachers to find out ways to make this better, plus we really need to update his IEP and get him in Speech.

So we go see his 1st grade teacher and she looks right at us and says "A doesn't really come in here at all much, just for journal time and then he spends the rest of the day in Mrs==='s class." and turns away.

Um SERIOUSLY?!  WTF!  Just totally ignored us.  Before we left I walked up and told her that we were taking him out of school the last week of September...as I am saying this her eyes bulge and a look of disgust? maybe washes over her face.  I told her I would email the details, and left.  Really?!  UGH

The SPED teacher was out sick, so I didn't get anything resolved and now I am just pissed off all over again.  The most frustrating part is that this school is the best school for SPED in the parish...and I have never had a major issue before!

So for now, I am just going to...

Yes I booked my dining 5 months ago...

You may have heard...I am going to Disney World next month!

In the last Disney post I mentioned that you need to plan ahead for Disney.  One of the major planning points is booking dinning reservations (ADRs) 6 months in advance.

Ok, ok I hear you.  How do I know what we are going to want to eat on which day for a vacation 6 months from now?!  Well that's the tricky part.

What people used to do (I never did this but I have read about it) is make multiple ADRs for mealtimes and go to the one they felt like.  Well Disney caught on.  Now they don't allow your ADRs to overlap, plus the popular places now charge a no show fee of $10 per person if you don't cancel your ADR at least 24 hours a head of time.

So what to do?  Well You can over plan, like we did in 2009.  I made an ADR for every meal, for every day of our trip.  It was miserable.  Especially since one of A's panic attack/fit triggers is noisy crowded restaurants, where he doesn't know what kind of food they serve.  Of course we didn't know this at the time.

So I learned from that for this trip.  This go round, I planned out my days better.  First I checked out touringplans.com for their best park for each day of our trip.  It's pretty cool, they compile data from past years, they factor in tour groups or events in the area, plus I think they even factor in the weather that week.

Once I had that info, I planned one sit down meal or dinner show per day.  Now we are going during the Free Dining promotion, so we have a meal plan.  We upgraded to the Deluxe version of that plan, and we get 3 meal credits per day, and 2 snack credits per day.  Most meals cost 1 credit, but the dinner shows cost 2.  For sit down meals we get 1 appetizer, 1 entree, 1 dessert, and 1 non alcoholic beverage per person, and for counter service meals (fast food) we get 1 combo meal or 1 entree plus side and a non alcoholic beverage.
The meals I didn't plan for we will wing it.  Just grab something at the resort's food court, or if the kids see a restaurant they want to try we will go there.

I prefer the dining plan because it allows us to pre-pay for all of our meals, excluding tip and any alcohol we drink.  I prefer to make at least one reservation per day.  It makes sure we don't have to wait too long for that meal (walking up to a table service restaurant without an ADR is tricky, sometimes you have to wait 45 minutes and longer, and sometimes they have no availability!).

Some of the places we are going to eat at...

I have made ADRs to eat at Hoop Dee Doo Review- a GREAT dinner show, vaudeville style show and they serve fried chicken, BBQ ribs and fixins'...
Spirit of Aloha Dinner Show-another great show that features fire dancers and such while you feast on traditional Luau foods like roasted chicken and pineapple pork...
Cinderella's Royal Table- Dine in the the castle while Disney Princesses and Princes visit your table!
Liberty Tree Tavern-this restaurant is themed like colonial America, my husband loves this restaurant because the dinner is just like traditional Thanksgiving...
50's Prime Time cafe-Very cool restaurant!  Feels like you are dining in Mom's kitchen from the 50s and 60s...they serve the BEST fried chicken!..
Rose and Crown Pub-English food, I love this place for the fruit and cheese plate, the stew and Woodchuck Cider on tap!

See at Walt Disney World eating isn't just something you have to do, it becomes an experience.

Now that we have a plan, what can we do to help A, who doesn't like strange restaurants?  Well Disney is very accommodating.  I will be able to email and call someone in the dining department and explain our situation.  They will contact the chefs at each restaurant and let them know that our child has eating issues due to his Asperger's and they will try to make some of his foods available.  For instance at the Hoop Dee Doo, the chefs will make A a pepperoni pizza or a grilled cheese.  I would not have known this if it wasn't for planning, and I wouldn't know which restaurants to contact if I didn't make my ADRs back in March!

So it is worth it to book your ADRs 6 months in advance if you can!

Been a busy week

Where to begin?  Well now that the kids are back in school, I am working 5 nights a week.  If you didn't know I am a cake decorating instructor.  I normally teach at one account 3 nights a week, now I am teaching at a second account for an extra two nights a week.

I started last week at the new account, and it was the breath of fresh air that I needed.  First off, I am replacing someone.  Very weird/crazy circumstance that I can't go into here.  Let me just say that everyone is glad I am there now, and the students were very thankful that I am shall I say normal!

The kids started school last week.  I brought them to there classrooms, and I think the teachers must think I am nuts!  First to K's class.  I met his teacher and in all of the chaos tried to explain to her that he is newly diagnosised with ADHD.  That maybe she should sit him next to her, and that his doctor also suggeseted giving him tasks to do throughout the day that required him to get up.  I know I sound strange, but I just want the school year to start off on the right foot.
She kind of nodded and then turned away.  I hope to talk to her again soon.

Then to A's class.  Now normally he checks in with the Special Ed teachers and they bring him to class.  However he wanted me to bring him this time.  So we get to his class and again amid the bustleing halls I try to explain to his teacher that he has Asperger's and this morning he decieded not to bring his blanket to school for the first time ever.  And how he uses his blanket to calm himself when he has panic attacks...and where can I find his SPED teacher so I can repeat all of what I just said to her...

Again I get a nod before she turns away.  I get it...it's the first day of school.  I look like that crazy mom not willing to let her babies out of her sight...

I assure you, I am really not that mom.

 

I guess all of this is also compounded by the fact that in a week I am going to tell the teachers that I am taking my kids out of school for a week to go to Disney World.  I just know I am going to be their favorite!

More of A's photos

My middle son A, the one who has Asperger's loves to take pictures.  Here are a few more that I just uploaded.

Planning a Disney vacation...aka....Universal is not part of Disney World

As you may have heard, we're going to Disney World in less than two months.  I have been planning this trip since March.

I heard a statistic that 70% of all people traveling to Walt Disney World (that's the one in Florida) are "Once in a Lifetime" visitors.  Meaning that those people go to WDW once and that's it.  I have an idea why those people never go back.

Sure the easy answer is money.  Disney is freaking expensive...more on that later....

I truly believe the reason most people only go once is because of poor planning.

For instance, if I want to go to the beach...All I have to do is book a hotel room, and pack my swimsuit.  Done.  No planning, right?  Of course that isn't how I would travel to the beach...I would spend hours scouring the inter-webs for the best accommodations for our budget, research the best spots of beach to visit in that area, look into what restaurants they have on the way and nearby, and also plan a day trip to something educational as a back up/when my kids are tired of being at the beach!

Disney is NOT this kind of vacation.

I always hear from people returning from Disney, that it was too hot, too crowded, lines too long, no availability at the restaurants(character meals, dinner shows, and signature restaurants fill up 6 months in advance!!!), and everyone was tired and miserable on the 1 hour drive back to the hotel that claimed to be "minutes" from the main gate!  Oh and our ticket to Disney didn't include Universal Studios!

I get it.  Walt Disney World is huge, 47 square miles...twice the size of Manhattan!  It's confusing! It has 4 theme parks (none of which are Universal Studios), 2 water parks, a huge shopping and dining area, and over 20 resorts (all with different themes and levels of amenities).

Overwhelmed yet?  Look at it this way...if you were going to throw down a couple of grand on anything else, you would do your research first!  That is the best was to approach a Disney trip.

Now take that into consideration, then add a toddler, a child with Asperger's, and a child with ADHD.  Yes it does take me 7 months to plan a Disney vacation for my family.

Over the next few posts I will walk through what I go through to get ready for a vacation like this.

It's a Zippidee Do Da kind of day

We are going to Disney World.

Again, yes again.

I have been to the World 4 times on vacation, and dozens more while working there, first on the College Program in 2001-2002, and then for 4 months after Katrina hit in 2005-2006.  Disney is my happy place.  My drug.

I fell in love with the World as a 12 year old in 1995.  I was supposed to go before that.  My grandfather was going to take me.  My dad was going around the same time, but because he thought I was going with my grandparents he didn't take me.  Then my grandfather's trip fell through.  So on Christmas day, 1994, when my aunt and uncle asked me if I wanted to go for Mardi Gras, I was a bit skeptical.

My mom and grandparents scrounged up the me for me to go.  Funny story:  My grandmother won $700 on a slot machine two weeks before we left for this Disney trip.  She gave every penny of it to my uncle, for him to split between my 5 year old cousin and me.  She said God gave her that money for to go and have fun.  I love her!

Not knowing better, my mom packed me up, with mostly t-shirts and shorts, and a pair of Keds.  I don't know if any of yall know what Keds are...but they have maybe a 1/16 of an inch of material between your feet and miles of walking!  Not great Disney shoes!

Normally, my uncle likes to drive in the early morning hours, a tradition I would continue!  However, this trip got delayed.  My aunt and uncle owned a poboy(New Orleans style subs) shop at this time, and they had to open, and work through the lunch rush before we could leave.  I remember my cousin Markie and I waiting that day.  It seemed like it took forever for us to finally get on the road.  I think we left sometime around 3pm.

My uncle doesn't like to stop.  In fact he is one of those travelers that likes to "make good time".  We eat in the car, and only stop for gas, which is where we pee as well...

We arrived around 1-2am.  We stayed at Disney's All Star Music Resort, Calypso section.  I was so excited.  As I sleepily walked to our room, I took in the all the wonderful sights and colors...a 2 or 3 story tall pair of maracas, and everything was bright orange and pink!

I don't remember too much about that trip except for a few details.  Markie and I fought like brother and sister the entire trip!  I remember him singing "It's a Small World after all.." over and over again, all day, just because I told him to stop.

I remember going to eat at the Coral Reef, a restaurant that shares an entire wall with the Living Seas, a huge ass aquarium.  The restaurant makes you fell as if you are dining under water.  Ass you step into the restaurant, you have to step down 4 or 5 steps.  On the side of these steps used to be bubble machines.  Markie, who was in front of me, got distracted by the bubbles(what 5 year old wouldn't?) and to be honest so did I and he stopped mid step, and I tripped over him and landed on top of him.

Disney cast members quickly ushered us to First Aid to make sure I didn't break his arm!  Almost 20 years later and I still haven't lived that one down!

I remember renting a watermouse, falling asleep at the Luau,and not wanting to ride scary rides(Space Mountain, Haunted Mansion) until they made me ride Big Thunder Mountain Railroad (I LOVED IT!).  I remember my uncle getting sick after riding the Teacups, and I remember hearing Phantom of the Opera for the first time on the drive up there and back(my aunt and uncle had seen it recently and bought the cd, I LOVED IT, and still do!), and I remember going to mass at the Polynesian(it was outdoors and one of the most peaceful services I have ever been to!).

Most of all I remember having to get a wheelchair on the 3rd day because those wonderful Keds I wore gave me blisters on every area of my feet...I couldn't even tie the laces, let alone walk!  Another thing that I haven't lived down yet!



This trip started a lifelong love affair for me with the Mouse.  In my next few posts I will talk about my first trip with my husband, our first trip with our children, and planning our current trip-a trip with 8 y/o with ADHD, a 6 y/o with Asperger's, and a toddler!

Through the eyes of a 6 year old with Asoperger's

Here are pictures I just uploaded from A's camera

Choosing Favorites

I needed someone to keep the kids overnight on Saturday...

Every year for my wedding anniversary, my husband and I like to have a night out.  Earlier this year we discussed maybe spending a night or two in New Orleans.  We never do the touristy stuff since we live in the 'burbs...so I thought it might be fun.  Dinner, dancing, Bourbon St...you get the idea.  Not only would we be celebrating our anniversary, but also our 30th birthdays...which happen in the next few weeks.

In March, my husband came home one day and said "What about Disney World this fall?"  Well, anyone who knows me, knows that those are words I long to hear!  For some women it's roses and jewelery, for me it's Mickey Mouse and It's A Small World...So anyway, he goes on to say that it will probably be a few years until we can go again, and we have a lot to celebrate/escape from.  Of course I start my mad planning, which I will blog about later, and we decide to not do our night in the city.

Then my husband starts working some crazy hours.  Like 84 hours a week for the last 2 1/2 months!

It's not too bad, except I have been alone with 3 children almost all summer.  3 children that include a toddler hitting his 'terrible two's' and 2 kids with extra needs.

About a month ago, my husband can tell I am stressed out, and we decide to take our night in the city anyway.  So I booked a room and made arrangements for the kids to stay at my dad's house.

Everything is good to go, and then I get a call this week from my aunt and uncle.  They want to keep my oldest son for that weekend.  They are his godparents and from time to time they will take him overnight.

Not a problem.

Later on while discussing it with my mom, she made a comment that set me off.  She said something to the effect of "I wish I could have had K (my oldest) this weekend!"  I started to tear up and I said "I hope one day people fight over A (my middle son) like they do K (my oldest)!"

 I feel like everyone jumps at the chance to have my oldest son sleep over or spend the weekend, always with the promise that next time will be A by himself, or both boys...

At the beginning of summer, another relative had K sleep over, with the promise that in 2 weeks it would be A's turn.  A never got his turn...
 A few weeks ago another relative wanted K to sleep over, while I took A and the baby to the Mississippi Coast for the weekend.  Again with the promise that next time would be A's turn.   

Do you know how difficult this is on A???  How it hurts his feelings???  He gets it. He knows that K get to do things that he does not.

 I get it. K is the "easy" kid.  A is more challenging.  He only eats certain things, he is hard to understand sometimes, and if a trigger is set off he could have a meltdown.  The older A gets, the easy he has gotten.  He understands how he is expected to behave out of our home.  The excuse used to be that he wasn't potty trained.  Well he has been potty trained for 7 months now.

So now Saturday comes around, and I have to prepare my son for sleeping at Nana and Pop's house, without his big brother.
 "Where is K going?"-A 
He is going to his Nanny's house. 
"I want go too!  We were supposed to go camping!!"-A 

A few weeks ago, this relative promised both boys he was going to take them camping...well life has happened, and he hasn't taken them....so of course, A who doesn't forget anything, is upset because he thinks K is going camping and he isn't.  PLEASE DON'T EVER PROMISE KIDS THAT YOU WILL DO SOMETHING UNTIL IT IS DEFINITE OR HAPPENING IN THE NEAR FUTURE!  I get that shit happens, but children don't understand, ESPECIALLY children with extra needs like Asperger's!!!!!

So of course, 2 hours before he goes to my dad's house, he has a meltdown.  He doesn't want to go there.  He wants to stay with K.  Repeat those last sentences, 40 or so times, while screaming, for an hour....
What am I supposed to tell him?  "I'm sorry A, they promise next time it's your turn.." 

This.
This is what I have to deal with, when my kid feels left out...

Now I have people telling me that it's good for the older boys to be separated at times.  I agree.  I just want people to realize that it isn't fair to always pick K.

What's going to happen when the baby is potty trained and older?  Is A going to get a turn then, or is he going to have to watch as people around us choose both of his brothers over him?


Once I calmed him down and he got to Nana's house he was ok.  He had a great time, and so did we.  I know that this too shall pass...I just hope that as A grows up, he and others realize that his differences don't make him less, they make him...him.

I scream, you scream

Summer is a time for fun in the sun.  For me summer has had its ups and downs.

My middle son, however, is having a tough time.  Routine and schedules are key to keeping a child with AS happy.  I haven’t been able to keep a set schedule for a number of reasons.  With 3 kids, a husband who works 12 hours a day, and I have a part-time job…things come up.  I try to plan outings, like swimming at the Y, the park, and occasionally the movies.  But some days, I admit, I don’t want to do anything…it’s too hot, or it rains...or I really don’t feel like doing anything. 

So we have had more meltdowns than usual.  During the school year, he may have one or two meltdowns a week.  This summer we are averaging 5-7 per week. 

Last night, we had a MAJOR meltdown.  We get in the van to go to Walmart, which is already an overwhelming experience for my son, and he starts…

“When we get to Walmart can I buy something?”-A

“Not tonight A.  Tonight we are just going to get the computer cord and some groceries, and then we are leaving.”-Me

“Why? I want to buy something! When we get to Walmart can I buy something?”-A

“A, not tonight.”-Me

“Why? I want to buy something! When we get to Walmart can I buy something?  Why? I want to buy something! When we get to Walmart can I buy something?  Why? I want to buy something! When we get to Walmart can I buy something?” and on and on!

“No A, I said no, not tonight.”

“Ohhh…I want to buy something!  You never let me buy anything!  I want to buy something! When we get to Walmart can I buy something?!”-A

I decide to see if I can defuse the situation before we get there, and I offer up an alternative…

“A, would you like an ice cream instead?  We are going to stop for snowballs.”

“You won’t let me have ice cream, because I can’t buy anything at Walmart.”  And again and again and again it continues.

So I buy the other two boys, my husband, and myself a snowball/ice cream.  Get back in the van.

“Ohhh..I want an ice cream!  You never buy me nothing!”-A

“A, I will only buy you an ice cream if you stop crying and screaming.  Can you do that?”

“…Ok”-A

 He gets his ice cream and refuses to eat it, because he is still upset.  We get to Walmart and the broken record starts again…”Can you buy me something at Walmart?”

OK Steph, just breathe (don’t kill him!).  He can’t help it.  He can’t help the repetitive phrases...it’s all part of his disorder.  I know why he wants to buy something.  That is his coping mechanism for Walmart.  He can’t stand the crowds, the noises, the smells!  If he is allowed to buy something, he can focus on that, not on his surroundings. 

The problem is I don’t want to have to buy him something EVERY TIME we go to Walmart!  He has tons of toys as it is (not to mention we have limited funds)!  If he would have settled for a candy, or something small, then I could see doing that…but I know he wanted something in the toy department…something big…lol.

He was able to get through Walmart without buying something, but he had to ride inside the shopping cart, eating his ice cream.

You know what they say...

I haven’t wanted to blog this past week.  I've had too much crap on my mind, and I am afraid to post certain things.  Let me start with the fact that I can’t stop thinking about a friend of mine.  She is going through the worst thing imaginable.  I won’t go into it….it’s not my tale to tell.  Let me say this though, in comparison I am finding it very hard to complain about my life.

I also learned something this weekend about a loved one, that I would rather I hadn’t.  No, I am glad I know, but I just wish the person would get help.  They are on a path of self-destruction and in complete denial about it.

Sorry for starting out so cryptic…I just can’t go into more detail.

Ok so back to my life…my bitching…

My oldest son is on medication for ADHD.  He was diagnosed in May.  His doctor said that he case is very severe and that choosing to medicate is the better choice.  So he has been on Vyvance since June.  We have increased the dosage once, and it is still not working.  He is still bouncing off the walls (think Tigger, but on speed, lol).  The only time I can get him to settle down is when he plays on the computer.

Do you know what he likes to do on the computer?  Watch animal vs animal videos.  My sweet, funny, charming almost 8 y/o likes to watch animals fight one another.  Should I worry about this or is this typical gross boy behavior?  It isn’t just fighting; the videos also give facts about each animal.  I know this because he likes to tell me all about it…lol.

He also likes to read about animals.  He got a fact book about “sea monsters” that he reads over and over.   He likes joke books too. 

He is excited because he gets to go back to school early this year.  He qualified for a reading program at school, to help him get caught up to grade level.  So for the next 3 weeks, he gets to go to school, for half a day, and read. 

I hope all we did this summer (getting him glasses, the medication, making him read daily and now this program) helps him get caught up to speed.  He is so smart, and so willing to learn, he just couldn’t sit still long enough to retain any of it.

I have spoken to an adult who has severe ADD and she told me what it was like for her before her diagnosis and medication.  She said it felt like there were a million things running through her mind at once and she couldn’t focus on any of them.  She said she felt like she was going crazy.  She couldn’t believe the difference the medication made.  She feels like she can actually function now.

See, I used to be one of those people who didn’t believe that ADD/ADHD was real.  Or maybe it is real, but it was VERY over diagnosed.  That kid isn’t hyper, he is a kid.  So of course when the teacher called to tell me she thought I should get my oldest son tested, the first thought was “he’s the youngest in his class” or “he’s a little boy”…etc. 

Now I know it really is an under developed part of the brain, not being able to communicate with other parts of the brain.  My son needs medication to create those neuro-pathways. 

If you break your leg, you get a cast…no one looks down on you for getting a cast.  Why is there such a stigma for ADD/ADHD and the medications for it?  Why do I still see “the look” when I say that he takes medicine?

Going through this, the biggest lesson I am learning is to not make snap judgments about other people.  I am the worst.  I gossip.  I judge.  I am a busybody.  I am starting to try to stop these behaviors, but it is hard.

Overboard

I feel like I have been thrown into the middle of the Pacific Ocean, and I am drowning.  I don't know where to begin.

Wow, Stephanie...melodramatic much?  Your kid doesn't have cancer, AIDS, or some other incurable and horrifying disease...he isn't dying.  He doesn't need a feeding tube.  He doesn't need a wheelchair.

And yet, I still want to mourn the loss.  I still need to be angry and sad.  I've done denial.  Then maybe I can I will move to acceptance. 


Can I also say that I hate the fact that the amount of therapy my child receives is based on what my insurance company decides...

Expect the unexpected...

Yesterday I got some expected, yet still devastating news.  My middle son has Asperger’s syndrome, and (as of right now) has low average to borderline intellectual functioning.

Wow that felt weird, typing that.

I was expecting Asperger’s.  I started researching three years ago, trying to figure out my son’s violent mood swings, not really talking, parallel play, OCD tendencies, and severe anxiety.  His (then) pediatrician said nothing was wrong, so I took him to Jefferson Parish School District’s Early Intervention.  After testing him, they told me “child has no exceptionalities, and is a little slow”. 

I’m not kidding.  That is an actual quote from the summary of a 12 page report.

At this point I think I must be crazy or stupid for being (what feels like) the only person who sees something wrong with his behavior and being behind on hitting milestones.  I am told not to compare my children, but I can’t help it.  My oldest child hit all of his milestones.  He was never violent with us or other children.  He could speak clearly.  He didn’t have nuclear meltdowns in public when overwhelmed.

So I got on a (five month) waiting list to see a pediatrician that specializes in behavior.  After her evaluation, she diagnosed him with: OCD, Severe Anxiety, Social Anxiety, Selective Mutism, and (with reservations) Pervasive Developmental Disorder-Not Otherwise Specified (which is a term on the Autism Spectrum for children who don’t quite fit anywhere else).

I say with reservations, because even this doctor did not truly believe he had Autism, but admitted that if she gave him that classification more doors would be open for him.  Of course she sort of implied that in her report, so later that would bite me in the ass.

Her recommendation?  Go back to Early Intervention, show them this report and get him in school ASAP.  She believed that once he was in school, surrounded by other kids he would start behaving like those kids, and in a few years these disorders would just go away. Ok.  Maybe she was right, and everything will get better soon.

On the first day of Pre-K, I was asked by the SPED administrator why my son needed to be in SPED, as the report from Early Intervention said there were no exceptionalities.  Huh?  I had already gone back to EI and given them the doctor’s report.  I was then told that they don’t like to label kids and that is why they said he had no exceptionalities, but since another doctor said so, they would amend their report.  Except they didn’t.  And now I look like an idiot to the school administration. 

Seriously?  I just want my son to get an education.  At this point he was 4 years old and not toilet trained (trust me, not for lack of trying), he spoke in short, hard to understand phrases, and almost constantly sucked his thumb because he was having panic attacks.  And everyone keeps telling me that if he just goes to school everything will resolve itself.

Well 2 years later and everything is not all better.  Sure, he is now toilet trained, and he speaks better, and has friends. 

However he still has some issues.  He can’t be in a store more than 20 minutes without having a “fit” (a panic attack).  He constantly repeats things.  He can’t use the toilet without getting permission first (it has to be a verbal conformation, and trust me, he will stand there and continue to ask until someone tells him it is ok to go).  He has an extremely limited diet (corndogs, cereal, and other beige things).  As I type this, he has repeatedly asked me to change my shirt (pj top with penguins on it) because it is bothering him.  He only wears shirts with collars and buttons (think polo style).  He has obsessions (trains, his Nintendo DS, etc).  He can barely hold a pencil and write his name, and he cannot read even sight words, and yet will be entering the 1^st grade in a few weeks.

So I decided to have him re-evaluated to see what to do next.  I decided to take him to a highly recommended clinical psychologist (what I should have done 3 years ago, but I didn’t know to).

After her evaluation, which took three 1 hour sessions, we met yesterday to discuss everything.

The first thing she said was that she didn’t understand how certain people missed his clearly Asperger’s related behavior.  She went on to say that the people (by this I mean official people, doctors, teachers etc) who told me over and over that he was fine or would simply get better on his own one day are either stupid or passing him along to someone else.  At that moment, I swear I wanted to leap out of my seat and hug her.  You don’t know what it is like to have seemingly educated people tell you over and over that everything is fine.

She then gave her exact diagnosis, Asperger’s, is a “slow learner”, and is at risk of ADD.

I expected Asperger’s.  The description fit, the symptoms fit.  I just needed someone to acknowledge it.  I was not expecting the below average intelligence or rather “slow learner” diagnosis.

As a mother, I see the best in my boys.  My middle son is so logical (in T-ball he refused to run all the bases because he knew that he was eventually going to run from 3^rd base to home anyway).  He is an artist (I have mounted and framed two pieces of his work from school because I find them so beautiful).  He is very skilled on a computer for someone his age.  Sure, he is having trouble in school.  I always assumed that that was his stubbornness much more than his ability.

The doctor does believe that he can get caught up, with ABA therapy, that he can be trained to function just like everyone else, but it is going to be a long road ahead of us.

It isn’t going to just get better with going to school.

Stitch is troubled...he needs desserts!

Yesterday I mentioned that two of my kids have "labels".  My oldest son has ADHD and my middle son is on the Autism Spectrum.  It has been a VERY long road....

It started the day he was born.  He came into this world on a Wednesday, six years ago this month, around 12:15pm; he was SCREAMING and PISSED OFF!  He was born via C-section, 10 months after Hurricane Katrina devastated our area.  From giving birth 20 months prior, I could really tell how Katrina affected this particular hospital.  In 2004 when I delivered, also via C-section, there were at least 8 nurses in the OR...fast forward to 2006 and there were only 4.  I could tell they were overworked, tired, and not very nurturing.  I let it go.

For those of you who have never had a C-section, the baby comes out, they clean him up, I get to kiss his head, before they rush him to the nursery to weigh and measure and put him in a warm bed for observation.  They try to bring the baby back as soon as possible, and with my oldest it was well under 2 hours.

Unless they think something is wrong...

I was in recovery, waiting for my baby and waiting to be moved to my room.  My family was in and out, saying how cute he was and how much he looked like my husband.  2 hours go by.  A nurse comes in and says that I should be moved to my room any minute now....Um Ok, what about my baby??  "Oh...no one told you?"  "Told me what?" says me trying very hard not to freak out.  "Oh...the baby was having trouble breathing, so they took him for an X-Ray and I think they put him on oxygen."

WHAT?  Was no one going to let me know this?  What the hell??

So I get moved to my room, with no baby.  Another 2 hours go by, and NO ONE WILL TELL ME ANYTHING.  I call the nursery and I am told they are still running tests and observing him...they will let me know when they know.

Another 3 hours go by just like this.  At this point my legs are still numb from surgery and I still had a catheter in, so it isn't like I can just hop on down to the nursery myself.  Visitors have been in and out and they all say the same thing, "We saw him in the nursery and he is the big baby boy who won't stop screaming."
I look at my husband and I tell him in my most serious, Momma Bear voice "YOU are GOING to go GET MY SON or YOU will GET A NURSE and wheelchair to BRING me there MYSELF!"  My husband left the room, and minutes later I could hear a screaming baby being wheeled down the hall.  My husband said he didn't have to go far as they were bringing him just then.

As soon as I picked him up he stopped screaming.

Just like that.

From that moment on, whenever he needed something (food, diaper change, etc) he wouldn't grunt, or fuss, or whine...he would go straight to screaming.  It would take us years to figure out that he is wired a little different, and to finally get a diagnosis of Pervasive Developmental Disorder- Not Otherwise Specified(PDD-NOS), and later Asperger's.

I have had to change so much of how I thought about parenting to be able to parent him properly.  It has made me more tolerant of others(at least I hope it has), and I am trying not to make snap judgements about people.

And because I am a total Disney freak, I will call him refer to him as Stitch...

Lilo to Stitch: "This is your badness level. It's unusually high for someone your size. We have to fix that."

I don't care that the Blue Power Ranger has an Octozord...

Two of my kids have labels.  I don't like the term special needs.  All of my kids are special and all of them have needs.  Ugh.  My oldest has recently been diagnosed with ADHD.  He is 7, so I kept telling myself that he was acting like a 7 year old.  Very active, very talkative 7 year old.  He loves to talk.  He gets that from me.  I can't help myself.  I have to fill silent gaps, and I don't do it well. 


A few weeks ago, I was getting my nails done with my bestie....a rare treat.  At one point I turn to her and I say "Did you know that the Tower of Terror is a mauve-y brown color because you can see the backside of it in the background of the Moroccan pavilion if you are looking from across the World Showcase Lagoon!?"

WHO THE FUCK CARES?!

Anyway, back to my 7 year old who does the same thing but instead of random Disney trivia, it is some new theory he has on the Power Rangers....His teacher calls me in January to let me know he CAN NOT SIT STILL in class.  I agree, I have noticed it at home, etc, and I ask her if she thinks we should get him tested for ADD/ADHD?  She sighed with relief and was glad that I brought it up because most of the parents she has this conversation with curse her out...WTF?  Seriously people, these teachers(at least most of them) are just trying to do their jobs and the LEAST we can do is NOT curse them out!

So I tell my husband we need to take oldest son to get evaluated and his first response is a very defensive "He's only 7!"  Ok, so I decide to sit on the issue for now and see how it goes.  Well fast forward to March and things are getting worse and not better.  So I made the appointment.

After spending 45 minutes with my child the (highly recommended, by several different sources) doctor comes out to speak with me.  With very wide eyes she says "My evaluation is only half way completed, but yes he ABSOLUTELY has some form of ADD."  She went on to explain later that within minutes of their meeting he started pacing the room.  When asked to name 3 wishes, at the 3rd wish he trailed off and started talking about her clock....lol.

So now we are in the process of trying out medications to find the right one.  This particular 7 year old is playing this to the nth degree...