Growing up.....adventures with the phone

The phone rings right after dinner. My husband (let's call him happy guy) and I are still cleaning our plates from my first meal ever that was truly good. I am no cook. Anyway, C gets the phone and begins saying hello, hello, helllllllo. It is at this moment we realize she has never had an interest in the phone and has NO IDEA how to work it.

I have her dial Happy guy's number. A number that it would take us a long time to memorize, but it was going to be her first call. It should be to no one else other than her best pal. She calls and says hello way before he picks up. She learns to hang up and then she calls mommy. The  number she does know from a snappy tune we taught her years ago. We chat about inconsequential things to me, but I finally got the idea. Teach her safety....while talking to her on the phone. Mommy is feeling proud of C and her own good idea.

Dad then has the idea to call someone else. Memere (grandma) it is. What a shock for them! So much for homework. This life lesson is more important. A call, from beginning to end, was the lesson of the night. She passed with flying colors.

I am so proud of her.  What other may say is no big deal, I marvel at as a huge milestone. One where she shows interest. One where she learned a process. One where she learned she can talk to her loved ones on her time schedule, not mommy's or daddy's.

I am in awe. My daughter is growing up. I am clueless about growing up with autism and loving life as it is handed to us.  One day at a time. 

 

Being a toddler is awesome. Even though she wasn't feeling well, she could always smile like a champ.

More pictures

Early on. She is awesome with her gassy little smile.

The first picture

Mamarazzi begin right here. I don't actually remember this picture being taken. My little one was an emergency C-section and I wasn't really feeling very well.

Finally a school for us. Help and helplessness all at the same time.

My cluelessness began to subside once we entered public school in a special education preschool. It was a total of 8 kids for half the day. Finally, I had a case manager who wanted to talk to me on a daily basis about her development.  I loved my teachers.  They didn't hesitate or mince words. We laughed, we cried and we just noodled through problems.  They said maybe you need to see a developmental pediatrician. So far we have a developmental delay diagnosis....what else could there be?  It felt goooooooood to have someone to listen. Friends just could not relate. Not that they didn't try, they just couldn't. I love them for trying. I do.

We eventually ended up at a neuro psych.  It ended up with ADHD combined type, sensory processing and the possibility of PDD-NOS.  Ummm, what the hell? A possibility of PDD-NOS?

Does this change our plans? We are still in speech and OT. What really changed here? Nothing. I feel more clueless than when I started preschool (um, I mean my daughter started preschool).

Special education preschool ended with a bang. My daughter was pushed on to kindergarten against my wishes. Five years old and not nearly ready for kindergarten.  An adventure to say the least. A wild and crazy classroom that is good for some, not good for others.  Communication overload. We loved our teachers, but we felt she needed to stay back in kindergarten. 

Kindergarten take 2. Much quieter.....much more rigid. No communication. Gah!   The difference was night and day between year 1 and year 2. Was this really a good place for us? Good environment, but I had no clue what was going on. Drove me nuts. Clueless again.

Case of the missing words....

From the time C was 18 months, I knew something was up. Not a cuddler, not a lover. Not a talker....either. No doctor believed me. You are just too worried as a new parent. By 2 years old C had fevers that would last a week at a time at 104. Our vacation to New Hampshire was a disaster, but it got us one thing.....an idea. That quaint little doctor's office in New Hampshire said there is an infection that we just can't see. Maybe an ENT? At 2 1/2 C had her first tube surgery with a side adnoidectomy. Wonderful Christmas present wasn't it? Sure everyone thought she would start talking immediately. Still didn't happen. Those words, those elusive words. Started with a speech therapist with the hope more would happen.

You hold onto hope for a few words when other mom's wished their kids would be quiet for one minute between the time they wake up to the time they go to bed. Still she was happy.

How I got here....

I entered motherhood wide eyed and idealistic. I wanted three or four kids and thought I would be able to handle it with grace and dignity. HA! After many unsuccessful years of trying, I was diagnosed with PCOS. My life motto is find out the problem and tackle it. No shooting in the dark. It is just a waste of time. PCOS? Got it. Now what do I do about it? Troubleshooting led us to having a baby the first month after seeing the doctor.

Great right? All set right? Easy from there right?

The moment my cute bundle was born C (shortened for blogging) opened my eyes to a whole new world. Healthy at first, she was the light of our lives. Still is in fact. Then we started to see the difficulties. Not smiling as much, not talking, sleeping very little, diarrhea ten times a day, just looking at you as if she doesn't really get what you are saying.

I am clueless. Utterly 100 percent clueless. One things always leads to another thing, then anther. The further I get into getting a diagnosis, the more clueless I seem to become. To date, C has been diagnosed with a penicillin allergy, severe lactose intolerance, many environmental allergies, Sensory Processing Disorder, expressive and receptive language delays, ADHD combined type, learning disorders and Autism.  She has had three sets of tubes in her ears, 2 adenoidectomies (yes, 2!) and numerous scans of all types.

My head is spinning with all of the acronyms. I am clueless. Through it all though, my now 8 year old reminds me of the simpler parts of life. Developmentally, she is 8 going on 5 years old. I don't have the same problems of an 8 year old trying to be 14.  We are not fighting about clothes being inappropriate for her age.  We generally fight about how much pink we can get into one outfit. I love it. Yesterday she wore a tutu to visit the doctor.

I will continue to read and make my self more knowledgeable about her alphabet of diagnoses. I will always continue to fight for her rights and education. I will not have autism as a secretive monster in the closet. We are open, we are dealing with it. I will not have autism and the other things hold us down. I haven't always been positive, but I am putting in the effort these days.

I have thought about this blog for a long time. Do I have anything to say? Would anyone want to read it? I don't care. This is my online diary of life. I type better than I write in a notebook. 

That is how I got here....clueless and loving our lives.