It's taken me a few days to get my thoughts together after meeting with the psychological evaluator. I'm still angry, but moreso what irritates me, is when someone says "You can't be angry." The hell I can't. Until you feel these emotions of pure helplessness, hurt, and the worst of wondering if somehow YOU made this happen or YOU could have prevented it, you have NO idea what these feelings are. I am entitled to be angry, mad, and down right pissed off at anyone I want to be right now.
Now luckily, I am not one to take my anger out on people. I turn my anger into a motive for myself. When I found out Gabriella had some form of Autism I started this blog and joined the Walk now for Autism Speaks. I have tried to educate myself on the formal diagnosis(es) and I continue to do so.
Gabriella has been diagnosed with Sever PDD and a global development delay giving her the skillset of a 6-9 month old baby. I had been preparing myself for the autistic diagnosis. I was in no way prepared for the global development delay. Especially to hear that my almost 21 month old child has skills of a baby so young.
The psychologist also told me that she has Pica. It is an eating disorder that falls in line a lot of time as a secondary issue to a disability. Gabriella cannot be formally diagnosed with Pica until the age of 2. As I told the psychologist, G has been putting things like paper, plastic, fabric, dirt, paint (yes, paint) in her mouth since she COULD do so.
They want to give Gabriella physical therapy as well, but that may have to wait until she is 2. Right now it is not a very needed thing, and the other therapies are. When she turns 2 she can be re evaluated, as they have higher standards for physical movement at that age.
So I guess now comes the hard work. I'm waiting to get all the paperwork from Early Intervention. Then we will sit down and discuss her IEP and hopefully get therapy started soon after. Eventually I will have to go to Social Security and apply for benefits as well. I'm not looking forward to that. That kind of 'seals the deal' in my eyes. I hope I am ready when that time comes.

Diagnosis has been given...I'm just not in the mood to put it all on paper...

Just thought I would add a little update, since it has been over a week that I've wrote.

Gabba is doing well. She's always so happy <3 That,s one thing that I will never complain about. And she is very affectionate to those she is close to....I love that about her.

So this is a blog of a frustrated mother.....

First of all...I get a call yesterday afternoon from the 2nd evaluator. I actually forget her name. Anyway, she proceeds to tell me that she is coming at 830 the next morning. I tell her that I have to be at work in Midtown by 9 am. She asked "how about 8am" so then I catch a bit of an attitude as I say "Obviously my schedule doesn't mean a damn thing, because unless you come at 7am, I'm going to be late. Just tell me when you are going to show up." So she come at 8am and is there for about 45 minutes. Now, to be honest, I'm at the point where I am confused....I've been told that Gabriella IS autistic, then I've been told that they are suspicious that she is autistic. Well, per the evaluator today, she IS autistic. No PDD, Aspbergers, etc. Gabriella is autistic. Seeing that is writing tears my heart and stings my eyes with tears. As each evaluator comes along I ask "Am I going crazy? I'm not just imagining this stuff, right? Am I willing myself to believe it, am I forcing to see things that aren't there?" Each time, I am told, No, I'm not crazy and I'm not imagining things. These actions (or lack thereof) are real. They are not conjured up in my mind.
I want to scream and shake the people uncontrollably that say "She doesn't look autistic." "She'll grow out of it, its just a phase." "Are you sure, maybe you should get a second opinion." "She's fine, her brothers and sister are perfectly normal". Normal. I hate that word. What IS normal? I've used that word many, many times in my 30 year existence, and I really don't believe I know what is defined by it. What is "normal" to some is not normal to all. So who is myself or ANYONE to "know" what "normal" is?
I'm so frustrated. I'm angry. I'm angry at God. I'm angry at myself for being angry with Him. I'm angry at the people who have so much lack of knowledge on the subject that have no idea what they are talking about when  it's brought up. I'm angry that her father is in denial, even though he tries to be supportive of it to be supportive of me. I'm angry that when I try to bring some light to him about the subject that he doesn't look me in the eye. I'm angry that I don't have family to rely on. I'm angry that no matter what, nothing seems to work out as planned. I'm ANGRY. Pissed off. Fed up.
I'm also tired. Tired of running and hoping and thinking and praying that its not real. I'm making it up. Its all just in my head. I'm tired of smiling all the time when all I want to do is hug my daughter and cry. I'm tired of trying to make everyone else think I'm OK when I'm not. I'm tired of being strong when in fact I'm a basket case. I'm tired of people not thinking before they speak. I'm tired.

And this is just the beginning...........

One last thing,  I've decided to do the NYC Walk for Autism Speaks on June 3rd. To sponsor us, please go to: http://www.walknowforautismspeaks.org/nyc/gabbasmama

So today was the first evaluation. This one was for her Speech and Communication. The evaluators name was Carla and she was very sweet. We had a bit of a miscommunication when she called me last night, as I was doing laundry and thought she said to call her after 830 am today...well what she REALLY said was "I'll be there right after 830am tomorrow." Woops.

Carla came in and G paid her no mind, as usual. So, Carla started talking to her. Still, no interest. Then Carla brought out some bubbles. THAT got G's attention. :)  She proceeded to give Gabriella a phone, keys, a truck...I thought that the way she "played" was taking the toy and throwing it. Well, it turns out that Gabriella throws the toys because she doesn't know HOW to play. Hence the reason she shows no interest in her many toys she has. WOW! Was all I could think. Carla tried to show her how to push the truck back and forth, and G grabbed it, looked at it, and threw it. As she does every other time. I guess thats why she likes balls....because they keep moving after they have been thrown.

So next, Carla wanted to see how she eats. G is a baby that SHOWS interest in a plate of food, but as soon as you try to give her some, she runs. I've had to supplement her meals with "baby food smoothies"...stage 3 baby food fruits and veggies, milk, and baby cereal a lot of the time. I guess that's why her pediatrician didn't raise too much concern about her still using a bottle, because she is getting all the nutrients she needs, as she is in the 35th percentile of her weight for her age. Surprisingly, G took well to the baby food we gave her. She ate about half the jar, and was good after the inital gag she did on the first spoonful. Now, since she eats 3 meals at daycare and just one with me, we all have to be stern and stick to feeding her with a spoon. She will get use to it, whether she likes it now or not.

Carla was with us for a little under an hour, and said that I should do some research on PDD specifically. Because of her almost no communication skills and a few more things, she advised me to do my studying and come up with questions if I have any.

Next comes another evaluation and then the big psych evaluation. The psych eval is the most important, as that is when the final diagnosis will be given. Once I told Carla that I had already been to see a neurologist and that is who infact referred me to EI, she seemed a bit more at ease to talk to me about the PDD/Autism side of things. Before I had mentioned it, she didn't even bring up the words. I guess she was afraid that I was a parent who was in the dark about the facts of my daughter. I am sure she comes in contact with those kind of parents everyday, however I am NOT one of them. Knowledge is MY best form of protection, and as much as I don't want to hear what could be wrong with the love of my life, the bottom line is that reality has to be faced in order to be productive and move on.

Thanks for reading.
XOXO
Kristy

Hello Gabba, hello world

*March 7, 2012*

I started this blog to help with my emotions throughout not only being a mother, but being a Mommy to a (possible) Autistic/PDD Child. I also started it for Gabriella. So when she gets older, she will be able to read her progress and see on paper, if not already in everyday life, how much Mommy loves her and will fight for her well being.

I am the proud mommy of my beautiful, funny, smart 19 month old daughter, Gabriella. She was born July 21, 2010 after 25 hours of (unmedicated) labor (and 2 weeks past her due date). She was my angel. She is the reason that I have fought so hard for what I believed in when I could have (and maybe SHOULD have) moved back to my hometown instead of living in a homeless shelter for a year in NYC. But I thoroughly believe I made the right choice.
We were in the shelter from the time G was 3 months until she was 15 months. At about 7 months, I started to see "oddities"....arm flapping, blinking wierd, ect. I always kept these little signs in the back of my head, but thought that a lot of the strange things she was doing was because of her environment. We moved out of the shelter and rented a room....the oddities didn't stop. In fact from the time she was 7 months until about 15 months, I saw a LOT of 'off' things she did....spinning constantly, obsessed with strings, babbling but no words, head bunting me when she didn't get her way....LOTS of things. One day, a family friend who has worked with special needs children for the past 2 decades came to me and changed my life.....she said "I think you need to get Gabriella tested for Autism." Heart palpatating starts now. That was when she was 15 months. It took 4 months to get an appointment with a specialist. The Doctor didn't even need to watch G in action. She just needed to talk to me to give the diagnosis of Autism/PDD.
I've been through the crying, mad, pissed off at God, I-can't-handle-this emotions. I've cried and thrown things and could feel my heart breaking through the months of "what if". Now the what if's have turned into "now what do we do". I had my first meeting with Early Intervention last night. And per my coordinator, I have a lot of concerns. Rightfully so. Gabriella is my world, my heart, my soul. The reason I wake up and the reason I work so hard. In simplicity....Gabriella is my ALL. I will do any and everything needed to make sure that she has everything she needs to live a productive, positive life.