Define Normal

Today George got all excited after seeing the school's information on Jon saying "He can outgrow his autism and be normal, right?"  NORMAL?  What exactly is "Normal"?

So, in an effort to figure out what normal means I figure I'd start by looking up the definition.  According to the dictionary normal means: conforming to the standard or the common type; usual; not abnormal; regular; natural.  Who defines what it means to conform?  Why must we all be the same?  Wouldn't that be boring?  Sponge Bob seemed pretty boring when he tried to be normal.  

In our house "Normal" is a setting on our dishwasher that we rarely use.  

Normal isn't something we use to define ourselves or others.

I asked others tonight on twitter what they defined "normal" as.  My responses were:

• normal: oxygen, ventilators, feeding tubes, nurses, not calling 911 when a child turns blue.
•  #complexmedicalneeds and 5 nebs before breakfast.
•  What is "normal" 2 you? #specialneeds " #complexmedicalneeds #Autism #feeding #preemie #apnea #sleepdeprivation #fear #joy
• normal: oxygen, ventilators, feeding tubes, nurses, not calling 911 when a child turns blue.” Not calling PERIOD.

In our house "normal" means, apraxia, autism, behaviors, speech and language delays, motor skills delays, and much more.  It means knowing about complex genetic changes.  It means being the special educator, nurse, psychologist, developmental specialists, feeding therapist, and cheerleader.  Normal is understanding what your kids wants, needs, and thoughts are even if they can't get it verbalize it.  Normal is hearing a Wookie sound or R2D2 and not thinking twice about it.  Normal is not batting an eye at hands flapping.  Normal is not having money because you have to save it for the specialist appointments that are lined up for the week.  

I don't like to be normal and fit in with the crowd. I never did.  Sponge Bob didn't pull it off well either. 

While others may want to fit in, I enjoy my children's differences.  I enjoy my children and relish in their accomplishments.  I have no doubt that my boys will go on to great things!  I adore the extra piece of chromosome that Chris has.  I wouldn't change a thing about Jon autism and all.  Matthew amazes me every day!  To me, they are my normal.  My boys may not be what others think as typical but to me they are perfect and that's what counts.

How the school is screwing us over part...lost track of how many

The school told me they saw exactly what was written about Jon and his PDD_NOS diagnosis.  They agreed that he has poor social skills, fleeting eye contact, etc.  The school sent the doctor paperwork showing the complete opposite!  The school said he has good eye contact, good social skills, is very appropriate and has no signs of an autism diagnosis.

The doctor did some evaluations, some observations and said that looking through the paperwork he showed signs at home but not at school of being on the spectrum.  She decided to do the ADOS to be sure.  The ADOS showed my monkey as being on the spectrum.  DUH!  We've only been saying it for HOW LONG? She agreed that he also has a severe communication impairment. and believes he has dysgraphia   .  She feels he could have dyslexia  as well but is too young for a firm diagnosis.  We'll have to go back and be rechecked in a year or so for it because right now it is still developmentally appropriate.

The doctor feels that we should put his autism diagnosis in the parental concerns section of his IEP and feels that it is a matter of time before they come out; she said by 2nd grade the school will probably be calling her up again for help asking her what to do.  For now, we need to advocate for more speech services to work on his apraxia and pragmatics/grammar.

Independent Evaluation Bound

Tomorrow we have our independent evaluation for Jon.  It all started in September when I called and asked for Jon's diagnosis to be fixed on his IEP.  They wouldn't change it.  They told me the person who did the evaluation was a psychologist and not a medical doctor.

The CST team told me that a psychologist doesn't have the training to diagnose a medical issue and they didn't have to acknowledge it.  I researched who can make a diagnosis of autism and showed proof.  I showed the team that the DSM guidelines and the letter from the psychologist stating Jon has PDD_NOS.  It took many calls to the state and to the Director of Special Services in our district and they agreed he probably has autism but they couldn't recognize it.  They said they don't need to put it on his paperwork as it is not interfering with his educational day.  I argued it was in fact interfering with his educational day and I believe his co-morbids are ADHD and dyslexia and he has a phonological deficit.

I tested Jon as I would any other kid that I worked with.  I showed them the proof and they were not pleased that I tested him.  They told me I was expecting too much of Jon.  They forgot that I am a Reading Specialist.

It took me reading the NJ State Educational code, citing specific areas in it about independent evaluations, and diagnosing autism for the district to agree to the independent evaluation.

Tomorrow is it and my stomach is in knots now!  I am afraid after seeing the speech evaluation report that the district will not put the PDD_NOS diagnosis on paperwork.

Alien Buddies for ipad

I need to get back to my blog.  I've neglected it long enough.  Perhaps Alien Buddies is the best way to get back to writing again?!  I have tried out Shake-a-phrase  and loved it.  Alien Buddies is a preschool app for the ipad that is by the same makers as Shake-a-phrase.  Although I don't own an ipad, I can only guess that Alien Buddies is of the same amazing quality.  It looks engaging to small children.  My boys love colorful games and anything to do with aliens.  If we had an ipad I'd be jumping on this game.  

Tomorrow only, Alien Buddies will be FREE!  This will be in conjunction with MomsWithApps, Friday event.  Please check them out!

Menu Planning Monday

I'm trying something new.  I'm going to share my menu for the week and my grocery list based on my menu complete with my coupons that I used with my list.

Monday: hot dogs and cheese burgers, home made mac and cheese, and a veggie that I'm going to let the kids chose.

Tuesday: raviolis and garlic sticks
I bought these a few weeks ago when Shoprite had them for 79 cents a bag.

Wednesday: eggs, bacon, and toast
The boys love breakfast for supper!

Thursday: ham, left over mac and cheese, and a veggie that the kids can chose

Friday:  Chinese food
I hit up a sale a few weeks ago on beef and broccoli and fried rice that were frozen.

Saturday: oven baked chicken, rice, and veggie

Shoprite:

·        Fresh Salsa 3.99

·        Alexa French Fries  4.99 plus 1.00 off coupon

·        Pepsi 5 for 5

·        Mountain Dew 3.49

·        Cracker Barrel Cheddar Chesse 1.99 plus 1.00 off of 2 coupon

·        Milk 3.99

·        Ham 3.99 a pound

·        Irish Cheese 4.99 a pound

·        Ranch Dip

·        Bread 2.99

·        Capri Sun 1.99

·        Crescent Rolls 3 for 5 dollars 40 cent coupon that doubles plus on-line 40 cent coupon

Produce Store:

·        Celery .79 cents a stalk

·        Baby Carrots .99 cents a bag

·        Lettuce .79 cents a head

·        Red onion .59 cents a pound

·        Sweet onion . 59 cents a pound

·        Cucumber  3 for a dollar

·        Tomato . 89 cents a pound

·        3 rolls . 25 cents a roll

CVS

• Finish dishwashing tablets 2.99 plus 1.00 off

I’m using my 7 dollars in RR to buy as many as I can

You're never too old to hear it Happy birthday honey

It never fails, I'm always sick for my oldest son's birthday or shortly after his birthday I get sick.  So, this is a bit overdue!

This year it was bronchitis. It does beat the year I had H1N1, though.

Happy birthday Joshua,
 14 years ago I had been given an amazing gift.  It was the best gift anyone could receive...it was the gift of you.  I remember finding out I was going to have you and thought to myself "How can I do this?  I'm so young!"  But I did.  And I'm so very happy I did.

 I remember as I was having you, the midwife put you on my belly and yelled "It's a boy!" I wasn't prepared for that; we were told you were going to be a girl.  Your Aunt Jessie and Pop were so thrilled that you were a boy.  Pop started crying when he came in the room and thanked me for giving him a grandson.  I swear the moment you were in his arms was the same moment that you wrapped your little finger around his.  He has spoiled you since!

I've loved watching you grow into this incredible young person that you are over the years.  You really make a mom proud to claim you as their own!

Thank you for letting me be your mom!
I love you,
Mom

Lots of blogging to come soon

I'm sorry I'm not keeping up with the blog right now.  I'm working on a lot of volunteering and starting to delve into lots of complications with Jon and Matthew with their IEP's.  We're entering the beginning stages of due process.  NOT FUN!

PYHO: SOS

Jonathan has been so disrespectful lately.  I'm tired of the yelling, hitting, punching, stomping, screaming, etc.  He's been horrible lately!

I try to count to 3 with him, I've tried rationalizing with him, grounding him *grounding means taking a privilege away for a day*, yelling, spanking *yes, I went there* and it's not working.

I don't know how to get through to him.  I am struggling with his diagnosis and how to discipline him.  I have tried catching him when he's doing something good, doing more positive than negative and it's not working well.

Any suggestions as to how to positively discipline a 6 year old little boy on the spectrum with ADHD?  I just want me sweet boy back :(

The Force was With Us

This past weekend we had Jon and Matthew's Lego Star Wars party.  We had 10 kids in our backyard mostly from the boys' kindergarten class.

When the kiddies showed up they were given a padawan vest lego style.

They completed an obstacle course of jumping from hula hoop to hula hoop,  crawling through a tunnel, and ending up in a tent of Star Wars characters.  I told the kids that when they entered the tent they would be dubbed Jedi and would have the power to defeat Darth Vader.  We had a pinata of Darth Vader's head for the kids along with a light saber.

I had planned on the kids playing with different Lego sets we have but when I asked Jon and Matthew to clean up, they put all the sets together.  Instead we completed Star Wars puzzles from Target's dollar section.

Next we ate, snow ball popcorn, light saber pretzels, a Star Wars Lego cake

 and drank Yoda Punch.  I didn't get a picture of it though.  I used Sierra Mist and Lime Sherbet.

The boys had a wonderful time but I have to say next year may be in a bounce house.  Much easier on this tired mama.

Planes, Trains, and Automobiles

Last weekend we had planed an outdoors party for Christopher's 4th birthday.  We had chosen a theme of planes, trains, and automobiles since he loves all three.  We worked with the colors red, blue, and yellow thinking it would be easy to find those colors.

We had 3 activities that we did and had planned a 4th but had to move in doors so we had to scrap the 4th activity.

1st the kids played on rugs we have with trains, Hot Wheels, and Cars.  I had buckets at each area so the kids could easily reach them.

Next we had the rice buckets that I had made. I put them directly on the rugs.  I had planned on putting them outside but the ground was still wet.

While we were cleaning up the floor from kids who threw rice all over the floor, the kids played with stampers.

I had planned on having the kids play with gliders but that wasn't being done inside.

We had snacks and cake last.  I had fruit salad from Costco, pretzels and dip, nachos and salsa ranch dip.  The kids love this so I thought it would be a hit.  

I made 3 different cakes, one was a chocolate air plane,

 one was a vanilla car, 

 and last was red, blue, and yellow tie dyed strawberry cupcakes

The airplane was a big hit until I did this....

I hope I don't do that this weekend with Jon and Matthew's party if we still have it.  Matthew is sick.

Sensory bucket overload

I thought I had pictures for my home made crayons I had done for Christopher's birthday party.  I don't so I'll make more crayons and do pictures.

What I'll share is our sensory buckets we did for Christopher's party that we had this past weekend.

I had tons of rice, like we get rice with WIC but my boys won't eat it.  

Chris is in an autism room so I was trying to do activities for his class that would be fun but educational.

We had brown rice but the instructions say not to use brown.  We did anyway.

First we poured two 16 ounce bags of rice in a ziploc bag.

I added about a 1/4 cup of vinegar

Next I put food dye in the bag.  I squirted about 15-20 drops in since it was brown rice.

Once the bag was closed *it is important to make sure it is or the rice will come out of the bag*, I had the boys help and squeeze the bag to mix the color together with the rice.

I had them dry on newspapers and put them in containers for the men to try out.

For the party I put cars and trains in them.  We have done others with different things in them like black and white beans with pumpkins and skeleton buckets for Halloween and green and gold with fake gold coins for St. Patrick's Day.

Wordless Wednesday: Self portrait

Christopher did this in school today

Happy Birthday Jonathan

Happy birthday Jon,
 
 This year we have found out that you have PDD_NOS.  It doesn't change anything about you.  It means we understand you more and can give you the space you need sometimes and can help you where you need help in other areas.

 You love playing with knights and dragons, army men, playdough, Transformers, Toy Story,  and Legos.  You are amazing with your hands and can create a Lego Starship without directions!

 You FINALLY hit the 40 pound mark.  You have no clue how excited we all were!  You really hit a growth spurt from last year to this; last year you were 36 pounds and around 41 inches tall.  This year you are 40.1 pounds *you were proud of the .1 pound* and 45 1/2 inches tall!  I guess all those times of you saying "hungry" were truthful and you REALLY were hungry!

This year we celebrated your birthday by going to Chuck E Cheese, Toys R Us, and Petco.  You picked out a fish that you named Pikachu.

I love you to the moon and back *and to infinity and beyond!*
Mommy

Happy birthday Matthew

Matthew,
  You are 6.  You have amazed me every second of those 6 years!  You have grown this year into a more handsome boy than you were last year.  I didn't know that was possible to do!

You are part ham/part anxious little boy.  You have made us all laugh with your jokes and humor.  You have made us smile and frustrated all at the same time.  I wish we could figure out what is making you tick kiddo!

This year you have broken yet another bone.  Do me a favor and make it your last ok?

This past year you have enjoyed playing video games, legos, and with the trios. You love Ben 10, Batman, and Phinnies and Ferb.

Saturday you celebrated your birthday by going to Chuck E Cheese, Toys R Us, and Petco where you got a fish.  You named him Red Tail.

I love you to the moon and back,
Mommy

Happy Birthday Baby Boy

4 years ago our family was complete. 4 years ago *2nd birthday* we entered a journey we weren't prepared for but embraced it with open arms.

Dear Christopher *1st letter*, 

4 years ago you came into this world not quite ready for it.  You came out yelling "Put me back in.  I'm not done baking!"  You made up for it though.

This year you have started talking more and more.  You have made me re-think the whole "I wish he would start talking thing I said before."  Funny thing is, I love it!  

You love playing with your Mater toys, your Thomas toys, and Nano Bugs.  You have started playing with Legos more and more.  You also love to play Wii.  

Tonight you will celebrate your birthday with a meal fit for a king *or a pre-schooler* of Cars chicken nuggets, french fries, and broccoli.  You love your broccoli!  I have a special cake for you of white cake with Oreo filling and Oreo icing.

I am in awe of you and your strength.  I am so excited to see how you blossom and change over this next year on your way to 5.  You made me proud to call you your mommy!

I love you to the moon and back, *3rd letter*

Mommy

First day of school

I've been busy these past weeks playing with the boys and spending the last weeks of summer with them before they start school.

Yesterday was the first day of school.  Jon and Matthew started kindergarten.

Chris had his first day of preschool.

Jon got to school and lost his 2nd tooth as soon as he walked in. My child was the first to visit the school nurse for the year....They enjoyed their day and were very happy today when they got home.

To celebrate the milestone I made the kids special cupcakes for their lunches.

I used a box mix to save time.  I used a 1M Wilton tip for the apple, a tootsie roll for the stem, leaf tip for the leaf, and a gummy worm to come out of the apple.

Tomorrow Matthew gets his cast off.

Mama is the QUEEN of stupid injuries

When I was 10 I cut the tip of my pointer finger on my left hand off when it got caught in a bathroom door at the YMCA for a girl scout function.

When I was 16 I dove to hit a ball while playing tennis.  I sprained both ankles and my knee.

When I was a senior in college I broke a toe in two places while running to the bathroom to rinse my eye out when I got nail polish remover in it.

When I was pregnant with the twins I was trying a new maternity shirt on in the kitchen and got my hand in the fan.  I broke 2 fingers in my hand.

Last night I was picking up a pair of underwear and when I came up I hit my right shoulder hard on the mounting for a baby gate.  A baby gate that we've not used in years but the mounting wasn't removed.  I tore my rotator cuff.

Wish GRANTed

I took some time off of my regular Friday and Monday posting.  I needed some kid time with the boys.  I wanted to share this with you.  I am on a multiples website.  We all have the multiples "thing" in common but there are a few that also have the special needs "thing" in common.  2 of the little boys on our site have something called a  mitochondrial disease.  One of the boys has an older sister named Delaney.  She has made it her mission to share with others not only what mito is, but how amazing her brother Grant is.  She is trying to get 10,000 likes on her facebook page to spread awareness.  Can you help?

Kids Say the Darndest Things

Jon has two really loose teeth.  His teeth are so loose that they are hanging by a thread.  Sunday as we were on our way to church I overheard a conversation between Jon and Matthew that went a bit like this: 

Jon: "I know Matty but they hurt."

Matthew: "Just think about it this way, you'll get 5 dollars.  Isn't that worth the pain?"

Jon: "Kinda, but I don't know how to wiggle them out.  Can you help?"

Matthew: "Ok, but remember if I pull the tooth I get the money."

Jon: *HUFF*

Matthew: "Don't worry, I'll share some of the money with you!"

In other words, Matthew wants 5 more dollars and he things by pulling out Jon's teeth he'll get the money.

PYHO: Take me I'm all yours

I was at the grocery store today and enjoying it.  I know that sounds silly but if you are a mom you know what I mean.  I enjoyed the few minutes of someone NOT hanging on me, punching me, calling "MOM, MOM, MOMMY, MOMMY, MAMA, MOMMY" at me.  I enjoyed not wiping a butt.  I enjoyed being "ME" for once.

While at the check out area, I must have been daydreaming.  When I "came to" the cashier asked if she could join the daydream with me.  I would laughed and told her she could but I wasn't sharing the man.

My daydream was something like this...a tropical place, night-time, with a great breeze and this guy next to me.

Some days I don't want to be covered in shit, punched in the back *yes it still hurts Chris*, be in autism land, in genetic syndrome world, in special need planet.  Some days I want to have a break, a break from the money talk, the trying to find a job talk.  Some days I just want to be me, a woman, a woman with a lust for a certain vampire.  I would have been more into the daydream if Alan Ball would have given that shower scene more justice...Eric, I can go back to blonde for you!

Baking therapy

I have written about how the boys love to garden.  We work in the garden every day.  This week we had about 2 cups of raspberries that I was able to hide from Matthew.  I bought the other 4 cups.

The boys and I made raspberry jelly Friday night.

We poured the raspberries in a pot.  Jon used a potato masher to mash the raspberries.

Next we poured 4 cups of sugar in the pot.

Last we stirred the raspberries and sugar.  I did most of this since I didn't want the boys to get hurt.

I stirred it until it stuck to the a spoon.  Then put it in a canning jar.

We used the raspberry jelly to make cupcakes yesterday.  It was a rainy day and the boys were boarded.

We adapted this recipe and made lemon cupcakes with a raspberry filling and lemon butter cream icing.

I made the cupcake recipe.

And by doing so got our hands a bit dirty.  This was a sensory activity.

After they were done baking and cooling we cored out the center.  The boys loved eating the cupcake holes as they called them.

Next we filled with the raspberry jelly we made on Friday.

We had to use fine motor skills to do this as he had to squeeze the bag to get the jelly out.  This was also a sensory activity for Chris since he hates getting sticky things on his fingers.

I adapted the Wilton buttercream recipe a bit to make it work with this lemon raspberry cupcake.

I added 1/2 cup more of 10X sugar, lemon juice from 1 lemon, and about a teaspoon of lemon extract.  I also tinted it a light yellow using food coloring.

I practiced my decorating since I'm still learning and decorated the cupcakes 2 ways.

The cupcakes seemed to taste better when refrigerated.  I put the in overnight.

While we were making the jelly we talked about colors and textures.  While making the cupcakes we talked about colors, measurements, textures, hot vs. cold and how they tasted.  I think the highlight for the boys was when I squirted some of the left over icing in their mouths!

Monday weight loss

I'm a bit confused.  Last week I wrote down my weight and did a BMI calculator on-line to get my BMI.  It said 31.7 was for 228 pounds.  I lost a pound (after gaining half of a pound back) so I am at 227.  The BMI on my Wii fit said I was 31.74 today but if I go by the BMI on-line I am 30.8

I cheated a bit yesterday.  I gave in and had some chips and a small couple of bites of ice cream.  I also had a Pepsi.  I am learning to NOT take it all away but LIMIT myself.  The chips weren't limited but I was starving!  I woke up, got the boys around for Sunday School, took them *it was their first time going*, we got home around 2, I ran out to the store and realized around 4 that I hadn't eaten.  Not the way to do things.

At any rate.  I'm going in the right direction.  I can do this!  My goal is to have a BMI of 20.9 and a weight of 150.  That is what I was when George and I met.  I'm assuming the twin skin will make it harder to fit in the size I was though.

Week 6 of our Friday Fun Day

This week we had ESY Monday through Friday 8:30-12:30 for Chris.  Jon and Matthew had speech on Monday and Matthew had OT on Thursday.

This week we enjoyed a trio that we dubbed "Eat Me, Meat Me, and Moe" 

We ate those for my birthday dinner on Sunday.

This week we worked hard outside.

We enjoyed our garden

We had more raspberries today but I didn't take a picture.  I'm going to make some jelly with them.  I need to go get more raspberries from our farmer's market though.

Our friend came back to play with us

We played with our bubbles.

We were a bit silly by growing another set of arms.

We went to the 4H fair here.  My mother-in-law made me almost pee my pants! *ok not for real but when you see something like this it tends to make you scream (and hide behind your father-in-law)*

Yes, that is a snake they are holding.

We saw baby cows.

We had a sheep talk to us

We transformed into a pumpkin and scarecrow.

We pretended we were milking cows.

Finally we enjoyed cotton candy that was bigger than we were!

We sure did pack a lot into this week.  Summer will be ending soon and school will be back in September.  

We had a wonderful week and are looking forward to what next week will bring us.