No parent thinks it can happen to them, to their child… But it happens with no explanation and no warning. It hurts! You will always wonder where or when it happened, was there something you could of done differently??? The answer is, there is no answer. That realization is probably the hardest of them all. Maybe 1 day we will know but right now there are too many variables and theories to pin point.
You can find thousands of studies saying all these different things give you higher risk factors in having a child with autism. Well in our case, with our child, we didn’t fall into those categories. First off I’m talking about my daughter (where most autism cases are boys). My Husband and I were both 28 when she was born (not advanced parental age). She was a term pregnancy (39 weeks) with no complications. She was not under weight- born at 9lbs 10oz, 20.5 inches. During my pregnancy I did everything right, was never around smoke, never drank a drop of alcohol, ate well, saw my doctor regularly and if I was suppose to do it- believe me- I did it. She was not my first pregnancy so I knew what to expect.
She is beautiful, smart, funny, loving and yes she also happens to have autism.
That sentence took me over a week to actually write down. Even though this is one post, posted on one day I have actually been writing this for a couple of months.
Giada has been in speech therapy since the end of March, occupational therapy since the beginning of April and play therapy A.K.A The Play Project since mid-April.
Giada was a very difficult baby. From the day she was born it was almost impossible to comfort her. The fact that she was not my first child I could not understand how I could not comfort her. She didn’t like to be held. She had GI issues from day 1. If you didn’t hold her just the right way, bouncing in just the right rhythm, standing underneath a running ceiling fan that she could watch you wouldn’t be able to get her to drink a bottle. There were so many things like this that now looking back make sense.
We started to realize there was a problem right before Giada turned 16 months old. Within a couple of weeks I had made some calls and had an evaluation set up with our counties early intervention program. The evaluation was set for the day she was to turn 18 months old. About a week before she turned 17 months old it hit me, I knew what was wrong. It hit me like a ton of bricks- how did I not see it before?
I don’t think I have cried so much in my whole life as I have in the last few months. The best way to describe how I have felt is to say that I have gone through the stages of grief- probably 12 times over. I find myself coming back to the anger phase a lot. I think I probably always will because it is the type of person I am.
Denial was probably the phase I spent the least time in. I knew denial… A.k.a wasting time wouldn’t help anyone let alone my daughter. Action and immediate help is what she/we needed and I needed to do everything possible to get as many people involved and as much help as I could possibly come up with as fast as I could come up with it.
A friend of mine who had been where I was about 6 years earlier saw the fear and sadness in my eyes one night at a get together. She put her hand on my shoulder and said “We need to talk- I’ve been there. I know it is hard. You NEED to call Children’s!”
Monday morning I was on the phone with our pediatrician and was getting a referral to Children’s Hospital Autism Clinic. Our appointment was set for April 8th, the day Giada would be 19 months old.
It was at this appointment we were told for the first time by a Doctor that yes our daughter has Autism.
Even though this was something we had known for months and other professionals had told us all the red flags were there this was somehow different. We were crushed- devastated. I spent the next 36 hours in a complete fog. I couldn’t sleep, I couldn’t eat, I could barely function. But you do what you have to do, deal with things and take the next step.
We slowly started making phone calls to the people we thought needed to know. It was a very short list. Giada still has 6 hours of evaluations ahead of her. 2-3hour appointments that will take place on 5/10 and 5/17 to determine where she falls on the autism spectrum.
My biggest fear was/is that people would/will treat her differently, label her. I wanted to scream from the roof tops that yes it is terrible and it sucks but she is still the same happy go lucky kid she was yesterday! She is still Giada!!!
As for what does this mean for next week or next year, when she is 5, when she is 10, 20, the rest of her life? I have no idea- the thought of that scares me to death. The best I can do- the best we can all do is take it 1 day at a time.
I’m going to be the best mother I can to my child. I will do and get her everything she will need to help her through her journey.
I hate Autism but if this is the face of Autism… Autism is Beautiful.
There are people that I need to thank for everything over the last few months…
My Brother- Nick
My Best Friend- Amanda
Close Friends- Ras, Linda and Katie.
I also wanted single out a few here that no matter how big or small really made a difference to me…
My Parents- Gary and Ruth- you have been here for all of it! Talking when I want to talk and letting it be when I didn’t. You both have dropped everything to help out with Nicholas when we have been running Giada all over for diagnostic appointments and therapies. I don’t think I could ever repay you!
My Cousin- Lisa- for listening to my out of nowhere ramble and never once sounding shocked, sad or thrown in anyway and offering to come into town and help truly -touched my heart.
Close Family Friend- Karen- She said to me “Honey you did not do this, there was nothing you did to cause this.” She was the first person to say this to me and I really needed to hear it. Even though my brain knew it was true it is something I struggled with and still struggle with on a daily basis.
My friend- Michelle- you have given me so much! Guidance, experience, advice, hope, answers, everything. If it wasn’t for you I wouldn’t of been able to get as far as fast as I did. You were constantly checking in on us, on me. You are an angel!
My Son- Nicholas- He is amazing! At only 3 years old he is the most compassionate and understanding child I have ever met. Giada is so lucky to have him for her big brother!
And My Husband- Brad- We are in this together! I know we never expected this but we have a fantastic family and NOTHING will stop us!
My advise to anyone who is worried about their child or suspects your child might have autism… Don’t wait. It doesn’t hurt anything in asking questions or getting an evaluation. Don’t let your fear of the answer stop or delay you because time is everything. The more time the better, the earlier the better, the younger the better!