About Me

I'm not going to come on here and act like I know everything.  In fact, there is a lot that I don't know.  But I will tell you what I know a little bit about.

Special Needs Children.

In fact, I have 2 of them.  My son, Elijah, will be 6 years old in just a few days:

And then, there is his sister, RaeLynne.  She just turned 3 years old in November:

They have made Special Needs my life.  After 5 years of being a stay at home mom, I decided to take the leap into the working mom's life.  Guess where I ended up?  As a habilitation specialist for adults with Special needs.  Funny how that works, huh?

I can tell you the things this blog will NOT be.  I will not make money off of it.  I will not beg you to buy things that are unnecessary or stupid.  I may just be a little brass at times, and I definitely don't need any one to "approve" of it.  I may post a lot.  I may not post for days.  The kids have a lot of appointments, so you will probably be hearing about those.  We see close to 15 specialists at Nationwide Children's Hospital.  It seems like if I am not working, we are at an appointment somewhere!

Well then, what WILL this blog be?

Autism.  Down Syndrome.  Hearing loss and deafness.  Extreme prematurity.  Shared Parenting of the Special Needs child.  Blood disorders.  Heart Defects.  Multiple appointments a week.  IEPs.  The blended family.  What it's like to be a full time working mom and deal with all of that.

Let me introduce each of my children and identify their "disabilities," if you will.

Elijah Thomas

Born 2/1/06 at 9:06pm

4 # 14 oz and 18 inches long

This beauty was born 6 weeks early.  We knew before he was born that he was going to have Down Syndrome and a heart defect that was going to require surgery sometime shortly after birth.  We were VERY lucky in the sense that we had 5 months to fatten him up to get him ready for that surgery.  THAT surgery that lasted a long 14 hours.  Every single minute that passed I was just SURE that they were going to walk out at any minute and tell me that they weren't able to repair it or that he didn't make it.  Yes, I was a 19 year old Mom that had no other children, no experience with special needs and sure as hell NO experience with hospitals or surgeries.  But Peanut, as he was called, DID make it.  We spent 5 days in the hospital, but man, once he came home...it was like he did a total 360.  His life improved dramatically.  He was able to eat a whole bottle without sleeping every 15 minutes and didn't take a whole day to drink a bottle.  He started rolling over and growing like a champ.  Heck, his WHOLE LIFE IMPROVED.  I will be forever indebted to Dr. Alistair Philips who changed my life forever.

Fast forward a few months.  That's when we found out that hearing loss and deafness were going to be the normal for us.  We fought, unsuccessfully, with hearing aids before getting a Cochlear Implant on September 12, 2008.  That went pretty well until Autism reared it's VERY. UGLY. HEAD.

I don't know what I hate more about Elijah's diagnosis'.  I think they all make him HIM, but they each suck in their own way.  I will say, that once the Autism really sunk it...he REALLLLLLY changed.  And not at all for the better.  We lost about 9 hours of sleep a night.  He literally slept MAYBE 3 hours a day.  Maybe.  That was on a realllly good day too.  We tried meds, we tried therapy...we even spent hours at a sleep clinic trying to figure out what to do with him.  He was in a toddler bed, but in a few short months, the Abilify (which we later switched to Risperdal) had shot his weight up about 15-20 lbs.  That is a LOT for a small, 29 lb toddler.  So, we decided to put a queen mattress (luckily someone was getting rid of a nice set right at that time) on the floor and his sleep forever changed.  He slept.  A lot.  Every single night he was sleeping nearly 9 hours. NINE. SOLID. HOURS.  Oh holiness. :)

But, 6 months in to the meds...he was up to SIXTY lbs.  Yes.  You read that correctly.  SIXTY.

We tried backing off of them...but changed our minds in the first few days.  He was evil.  Pure evil.  So the meds stayed and finally his weight leveled off and he was no longer gaining over 5 lbs at every checkup.  He is sitting at 61 lbs now.

So that's Elijah in a nutshell.  I could go on about him forever.  I really could.  He is and has been my world for 6 years.  When he was 2 years and 9 months old, his life, and mine changed forever.

This is where the shared parenting comes in.  I'm not going to go into the details of his life at his father's (we separated when he was a very small 8 month old).  There are a lot of things I don't like, but hey, I'm JUST the mom.  His step father and I got married almost 4 years ago and he is very good with him.  He doesn't necessarily know or really try to get involved a lot with his medical (because I'm his mom and I do it the very best, he tells me!)  But if I need him to go to an appointment with me, he is right there.  We have been through a LOT in 5 years.  A lot.

Ring in little sister.

RaeLynne Ruby Lee

Born 11/14/08 at 8:30am

1 # 14 oz and 11 inches long

Yep. You read that right.  Not even a whole 2 lbs when she was born.  Miss Rae blessed us 14 weeks early.  She was the tiniest thing I had ever seen, and I thought Elijah was small at less than 5 lbs!  We spent from October 21, 2008 (I was admitted in labor at this point), until March 7, 2009 in the hospital.  That is 113 days if you count it out.  It was the longest time I had ever been away from Elijah. I spent most of it by her side, never leaving her, because I feared that she would not be there when I got back.  I went home just a very few times during that period.  We had ups and downs, good days and bad, miserable days.  There were lots of days I didn't think we would ever leave...lots of times when I just KNEW that she wasn't going to make it.  But, thank God...she did and she is here with us now.  For the most part, she is a happy, healthy, bratty, typical 3 year old.  Yes, we still follow up with Childrens routinely, but we have cut it down to probably 3 or 4 clinics at this point.

She is something else.  Something else of another universe.  She is smart as a button, and quick on her feet.  She is witty, and let me tell you...you WILL not outsmart her.  She knows all her letters, numbers to 30, and is starting to write things correctly.  She can count to five in Chinese, and Spanish.  She is just something that I can't even begin to put into words.  She is my little angel.

Like I said when I started rambling...I will never try to say that I know EVERYTHING that there is to know about parenting.  I have had lots of challenges, lots of breakdowns and lots of times I wish I could just run away.  I do know, however, that typical, regular kids scare the crap out of me!  I was joking with the OB/GYN at my last appointment that if we DO have another child and it would happen to be "typical" that I would please like to exchange it for a model more like I am used to!  Of course, that is a joke, and any child is a blessing.  But how people take their children home merely days after having them is BEYOND me.  That conversation is for another day though.  I hope that by reading this blog you may learn something.  That I may help you through a situation that is pressing to you.  That you can laugh with me (or at me, either way!), and that we can just be in this thing called life together.

Ah, the Little things in life!

Elisha