Day 3- Back to the Beginning

We had a better day yesterday, not a great day but a better day. I did all my things on my challenge except my goal to sped time with Monkey again. He woke up yesterday and for some reason decided he wanted to play the video game console that he rarely plays and by the time he grew tired of it and finally stop playing Peanut was up from his nap. Monkey's fixations and meals were tough yesterday. He did not want to eat anything which means today will be especially difficult because it always seems that when he doesn't eat enough during the day then he doesn't sleep well at night and he woke up and crawled into my bed at about 4am so he definitely did not sleep good. Lack of sleep combined with the lack of appetite...I am in for a bumpy road today.

Last Night's devotional was on Renewing Faith after heartbreak.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all so we fix our eyes on not what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal." II Corinthians 4:16-18

Kathy started her thoughts with the definition of "broken" in Hebrew. "The Hebrew word for broken is shavar. This means 'to burst, break into pieces, wreck, crush, smash: tear into pieces (like a wild beast)...'" This definition is really violent but isn't that how we feel when we get a diagnosis of Autism for our child or anything life changing that we don't like. It feels like a violent storm is ripping through your heart and life.

I think the storm started for me when that Doctor tried to discipline my son in the office because he was obviously not listening to me after several attempts and my son still had no response to the Doc. What an eye opener! This is no longer an issue of poor discipline on my part but an inability to discipline at all. Then the Doc started asking some questions about his development and I knew right away what he was implying and I lost it. Started crying right there in the office and the rest is a blur. I spent the next 48 hrs making phone calls to the references he had given me and HOURS on the phone with my sister going over what her Child Psych references had to say about his symptoms. I am not sure but I think I have mentioned in the past that my sister has a bachelors in Psychology and is currently working on her Masters in Social Work, so she is better versed in all these childhood conditions than I was at the time. I think I have done more in depth looks at ASD and Sensory Processing disorder than she has now but she was my initial go to and still is when questions about medications come up and treatment options. Anyway, I think I prepared myself for the worst and I secretly relieved that I was not imagining how difficult my child is. At the time this had all happen I was trying every discipline technique that exists to man and nothing seem to be working. I was flustered and stressed and unsure of what to do next...I honestly had thoughts of calling Super Nanny LOL Plus just like most of us parents we know when something is off about our child. I just didn't realize how bad it really was. I had seen signs of something being off around age 1. After Monkey's first birthday he became intensely fearful of the vacuum. To the point that my husband would take him outside while I was vacuuming inside and even with a door and wall between us he would shake violently in fear. He took a lot to get to respond to his name now looking back at home videos but at the time he was our only child and we were constantly engaging him in activities because we had nothing but time for just him so I think that is why we didn't notice plus we didn't really know what "normal" was. The other thing I notice in the home videos is his complete quiet and lack of interest in me while I was video taping him. The other symptoms that I had been concerned about was his delayed speech. I remember a child I babysat for when I was in college that didn't speak until she was two but she did say yes and no and the occasional Mama and Dada before that. My child did not communicate other than tantrums until well after his second birthday. I was the one who spent the most time with him and he didn't say Mama until after he was 2 1/2. He also had other sensory symptoms that were kind of strange, like and intense fear of stickers...what child is afraid of stickers? I had nicknamed him "OCD Boy" because he used to line everything in the house up. I would open my pantry at times to find an entire section re-organized and lined up perfectly all labels facing out. He was playing outside one day and he took all the patio chairs and lined them up perfectly next to each other rather than around the table. And the cars and trains! Oh my, I would have parking lots of lined up cars in my living room. The symptoms I had not noticed until we started the diagnostic process was his lack of imaginative play, his fixations, the ways he interacted with his peers and his lack of expression. I had noticed that he didn't make real friends, he liked to say everyone was his "friend" and he would run up to them but then he wouldn't interact much with them and then if you asked him about a specific "friend" he typically could not tell you anything about them because he never engaged them but I didn't really see it as a red flag at the time. The imaginative play was another that I had noticed but didn't really see as a red flag. I may have been in a little denial but I also think I just didn't know. There was not enough asked by the Docs on development at his well check visits and I didn't have time to read books on development all the time. And nobody in my family wanted to scare me unnecessarily by telling me they were concerned; especially since I had made my concerns known already. I think they just wanted to comfort me rather than scare me more. I don't really remember a time since last May, when the Doc confirmed all my worst fears, that I have felt at peace and whole again, until now. My torn pieces are coming back together and it feels so good. Feels freeing. "Today's verse reminds us if we don't renew our faith, after being broken hearted, we will waste away. To be renewed inwardly means we need to privately take care of our insides. This is done by reading Scripture and praying" (Kathy Medina)

As my Non-Biblical study last night I read the first chapter of the diagnosis section of The Autism Sourcebook. It was the same checklist I have seen many times now and brief descriptions of the possible diagnoses that fall under the Spectrum. I chose to read that section of the book because I knew it would bring me back to the beginning and how I felt when this all started just like my devotional for the day did. So, I am going to share with you the list of symptoms Karen Siff Exkorn compiled for the book based on several list she has researched. Like she said in the book, this list is only to alert parents to the possible symptoms for ASD not for you to use to diagnose your child. If you do see a lot of these symptoms in your child than of course contact your doctor for further testing.

Does your two to five year old child...

not respond when you call his or her name or seem generally unresponsive?

not use his or her index finger to point to objects to indicate what he or she wants or to show you something?

have intermittent or no eye contact?

still not speak?

not speak anymore? (loss of words)

demonstrate odd or idiosyncratic speech or language-such as endlessly repeating nursery rhymes, echoing or repeating words or phrases, or making unusual sounds?

demonstrate odd or idiosyncratic behavior-such as hand flapping, finger flicking, or constant spinning?

experience emotional volatility and tantrums that are out of control?

have poor motor coordination when it comes to physical activities such as running or climbing?

fixate on objects such as ceiling fans or bright lights or parts of objects such as wheels of a toy car?

seem highly distracted or "spaced out"?

show inappropriate attachment to objects (such as always carrying around a statue or piece of string) or frequently put objects into his or her mouth?

engage in obsessive, repetitive behaviors such as opening and closing doors, turning light switches on and off, or lining up cars?

display ritualistic behaviors such as lining up books on the floor in a specific order at specific times?

engage in little or no spontaneous pretend play?

constantly play by him or herself, showing no interest in peers?

never bring or show you toys?

show no separation anxiety when you leave?

resist change and insist on sticking to specific routines or rituals?

engage in self-injurious behavior such as head banging or hand biting?

show no apparent fear of danger or pain?

not like to be hugged, cuddled, or touched?

have unanimated facial expressions and/or a monotone voice?

demonstrate extreme over or under activity?

display a lack of sensitivity or over sensitivity to sound, touch, or visual stimuli (such as loud noises, rough fabrics or bright lights)?

have unusual sleep patterns (such as trouble falling asleep or not sleeping through the night)?

eat only limited, specific foods?

Again I have to say if after reading this list you have concerns please contact your Doctor and he/she can direct you to the next proper step.

It was good to look back at my feelings in the beginning and see how far I have come and the peace I am making with my new "normal" in life with my sweet boys.