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!