Hello....

I know that I haven't posted very many blogs lately....I have been writing them, but they just sit in draft form. See, when I blog, I just throw it all out there.

But...when there is something else going on, it just doesn't feel right talking about something cute Emily said or what I made for dinner. When you have things happening in your life, they take over.  I still have to make dinner.   The other kids are still cute.   Edwin still wants to kill us.   But, none of that seems to matter.

We decided a while back to do genetic testing, and it was not an easy decision. It required talking about past miscarriages, family addictions, and life pre-2008.  Not to mention the down time waiting to hear what the heck is wrong with your genes in the first place!  It also required hours of paperwork and trying to get as much family history as we could all the while dealing with closed off family members and knowing really nothing about my Mom's history (she was adopted).  But there are questions that we and our doctors needed answers to.

Why do I have seven kids, but I was pregnant 13 times?
Why do three of my kids have autism?
Why do I have a shoe box that is overflowing with the daily medications for my kids?

I wanted to do genetic testing to give my kids every bit of information for when they have families on their own.  I don't want to see them suffer through misarriages or be suprised if their child doesn't talk.  I wanted them to have information on their genetic history. 

I had great intentions.  But, I was very naive about the emotional aspect of it.

We made our first trip to Riley Genetics on March 15th with Edwin, Tobey and Melody in tow. The Dr. was amazing.  After a lengthy physical exam, he seemed to think that he knew what to test for.  He also said that he thought it was a gene mutation on one of our sides (I am totally blaming Eddie) that has caused us so many issues...including the 'tism.

And that hit me hard.   I never in a million years thought we would know how and why the kids had Autism...I came to peace with that years ago and had accepted that nobody knows why they have Autism. Eddie and I hardly talked the whole way home (that has never happened before).

A few weeks later we got the phone call from Genetics and were told that Tobey has a duplication in his 17th chromosome. But, because of all of the information, they could not discuss it over the phone.  So we made an appointment for two weeks out.   It was as soon as we could get in, but for me, it may as well have been a year.  

My mind wandered and I knew I had to find out what I was dealing with.  Immediately I looked it up on Web MD(very bad idea) and all I could see was horrible mutations and memorials for kids that died.  I went into panic mode.  

I just imagined all of the things that could take my boy away from me.   I literally lost nights of sleep over it.  

Two weeks passed and we had the ACTUAL consult this past Thursday.  And, as it turns out, it is not so bad.  The specific mutation Tobey has is on his 17th chromosome on the Q22 segment.   He has something in the area of 2.5 million gene replications here.   Now, they have seen a lot of people (in this case, kids) with this.  In some cases, they were absolutely normal, but in most cases, the people had autism, low muscle tone, ADHD, behavior issues, and in some cases, epilepsy.   So, the only thing we are going to do differently is move forward with a long length EEG to test the Tobey Jude for seizures.   Other than that, his care is no different, and they saw no reason that he wouldn't live a long healthy life of jumping and vacuuming. 

Also, they are hooking us up with RCDC ( I don't remember the words in the acronym)...They will look at our case and put Tobey with the EXACT right specialists for him for everything.   HOLLA!  The only downside to our visit was finding out that there is NOT a genetic test for Ellers-Danlo(which they believe the kids have...man I have used a lot of parentheses).   You just get diagnosed with it.   But, it is not a big deal, the kids just can't ever fight in MMA (sorry Eddie).

We also had the priviledge (and I DO MEAN PRIVILEDGE...we were honored) of travelling with Chuck, Diane, and Sarah from Living Stones.   If there are three better people in this world, I haven't met them yet.  Thank you  *cough cough DISNEY cough cough*   Man, these allergies!  

So
tomorrow, Tobey has an echo cardiagram as a precaution for his dental surgery in June.   Other than that, Not much more news...except of course...WE ARE GETTING SENTENCES FROM HIM!!!  
"Is it raining?"
"I want ice cream"
"Give me Tink (the cat)"
"Geopolitically speaking, North Korea is at a very precocious stage as it pertains to world security.   I truly hope they do not posses the capabilities of nuclear warfare.  Tickle?!"

OK, I may have embellished the last a little...

So, where am I going with all this?   Easy.   Riding the Tobey Jude roller coaster has many ups and downs, but I am sure glad I am riding!  

I will update about the rest of the kids later.   It's all good, mostly!   But, until then, my friends, I will talk to you later!

April 2, 2013

Well, today is World Autism Awareness Day.   So, I thought I would share with you my experiences with autism.  
I have an eight year old boy, Mr. Tobey Jude, and a twelve year old rock star son, Edwin.  Not to mention the other kids that have, to quote our psychologist, a "sprinkling" of autism.   That's right, we love autism so much we have begun to sprinkle it on our other kids!
So, when I was Tobey's age, I did not have that much experience with autism or special needs, with the exception of my Grandma who had Polio.  In fact, neither did the world.  It would be three more years until "Rainman" came out.   In 1985, the prevalence of autism in children was 1 in 2500.   In 2009, that number was 1 in 110.   Today the number is closer to 1 in 88.   these rates are "higher then the rates for cerebral palsy (2.8 per 1,000 children), hearing loss (1.1 per 1,000 children) and vision impairment (0.9 per 1,000 children) found in the same study." 
When I was twelve, I lost my Mom from complications from diabetes.   She was 34.   It wasn't until my high school years that I would have any real special needs experiences in school.
Since then, my life and world outlook have been transformed from my kids and my experiences working with other special needs adults.
Whenever I go out, I can spot a special needs kid or adult.  And, I also see the parents.   Frustrated.   Stressed.  Sometimes embarrassed.   I see them because I see them in myself.   You see, Tobey is one handsome little dude.   He has my heart wrapped around his flapping hands.   And, we are now at a stage with him where we can no longer hide the fact that he is autistic.   Up until this point, he was just a quiet little boy.   But, when he starts to stim in public or becomes very loud and vocal because he is over stimulated, there is no hiding the fact he has autism.   I had always wanted normal for my boys.   I never wanted them to be treated differently or worse than other kids.   So this kills me.

And, this doesn't even begin to cover how autism affects my other kids.   Lena, Alison, Olivia, Emily and Melody, bless their hearts, have had to make a lot of sacrifices over the years for the sake of the boys.   But, they are troopers, and you have never seen a group of sisters love their brothers so much.   OK, their brother...Edwin drives them nuts.
So, this is my attempt to light it up blue.   My goal is not to make people aware of autism...I think people are already aware.   It is not to make you feel sorry for us.   Don't!   We're happy!  We have more fun than should legally be allowed.   My goal is to make people aware of the fact that they cannot go anywhere without seeing a special needs person.  
They may be grocery shopping with their caretaker.   They may be out with their families.   They may be the homeless person who can't keep a job and whose family has disowned him out of ignorance for his condition.   Be aware, be merciful, and above all, be kind.  
OK, I'm off the soapbox.