The “A” Word

I’d like to begin this blog with introducing myself. I am Keli and I am a mother of a beautiful 2 year old name Aislin.

The day Aislin was born was probably the best day of my life. I laughed the whole way to the hospital. I was so excited to meet my daughter and labor was pretty easy until the last few minutes where I had to push really hard or they would have to get her out forcefully. You see, Aislin’s heart beat was plummeting. She was pink, then blue, then purple, and then completely gray. At that time, I really had no idea what was going on until I saw about 7 people rush in to revive her.

Let’s skip to today. My daughter is gorgeous. She can light up a room with a smile. She tries very hard and she doesn’t give up. I admire her for this and everything she accomplishes even if they may seem small and not important to most people.

You see somewhere down the line, we knew there was something different. At 3 months, she wasn’t smiling at us… hell, she wasn’t smiling at us up until almost 9 months. She screamed almost all day long up until she was a year old. At 9 months, she still wasn’t sitting on her own.

We talked to her pediatrician who blew it off until she could no longer. This is when we put her in Early Intervention at the age of 9 months.

At the age of 14 months, she still was not able to walk and she had no words. Her fine and gross motor skills were so very behind. We had an evaluation done on her and she was determined to have Global Developmental Delay.

At approximately, 20 months she began to walk but still even to this day she is unsteady. She has a lot of accidents and falls a lot. At 28 months, she has just started to try and climb things like chairs and couches. At the age of 28 months, this is when we got the diagnosis of Autism.

To say that I don’t worry about Aislin would be a lie. My husband and I worry about her daily. There have been nights we have cried into wine glasses wondering what our next steps are. How we are going to help our child. We see other children who are a year younger doing things that I don’t know if Aislin will ever be able to accomplish. And we are not trying to compare but we are only human.

I guess I am starting this blog for a couple reasons. One to get my thoughts out and two to let people into the everyday life of a special needs parent. You see, I have been searching the internet for answers. I’ve been craving to find people like me who just want to know what is going on with their baby… their world. I want to know when people noticed that their child was different. I want to know what signs they saw. I want to know that I am not crazy. I want YOU to know… you are NOT crazy.

I think one of the best and worst things in life is the internet. When you have this gut feeling about something you naturally look up things. Which can be a curse and blessing at the same time. You see, I have this fear for Aislin. I believe there may be something more to her than autism. And this quite frankly scares the shit out of me.

Aislin has always been very cautious of her hands. She does not want you touching, grabbing, or holding her hands. She lately always has them in her mouth… both of them. She claps for no reason at all. And she can’t point to things she wants or wave. I’ve researched the crap out of Retts Syndrome and I fear this is what she has. The list that they have of symptoms, fits her perfectly. I wish anything in the world for that not to be the case, I pray that it is autism and we can try to figure this out. But only time will tell.

As of now, we had microarray testing done in which she came back negative. The last two tests were for Fragile X and metabolic disorders. The geneticist called and left a voicemail saying the results came back and there was no new news to tell us. I left a voicemail for her yesterday to see what the next steps are.

I want you to know that if you are reading this and you are a friend, family member, someone in passing… do not feel bad for me. Do not feel bad for Aislin. I wouldn’t trade her for the world. She is the most sweetest child I have ever laid eyes on and she has taught me so much. She has taught me to be a better person.

If you are reading this and don’t know who I am but have a special needs child… You are not alone. You are doing great! You need to hear this time and time again. It is so important. With everything you are going through with the countless doctor appointments, EI appointments, the constant what ifs… Hang in there. You are doing the best possible thing for your child. You are amazing! Don’t let anyone get you down and do not let ignorant people make you feel any different than amazing.

We are in this journey together even if it is a different diagnosis or different issues, we have each other.

 

 

 

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