Monday, April 8, 2013

My Daughter with ASD Hits me PART 2: There's Always Light in Every Situation

We weighed out the Pros and Cons of Grace's behavior carefully. We came to the conclusion that she needed meds. We have done everything and more to get her where she needs to be. But let's face it the poor kid sleeps 3 hours a night, gets frustrated to the point of rage, and has so much trouble navigating her feelings. This was such a hard decision to come to. Honestly I am guilt stricken and feel like I failed...yet again. YEY parenting...ha ha.

The morning of the Neuro appointment happened to be April 2nd. I kept our business off the facebook fan page because I needed to gather my thoughts and the page was an escape to raise Autism awareness and do "blue like" things. How fitting the day we decide to get a prescription from the is Autism Awareness Day. It took Ernesto and me 2 hours to get her dressed and ready. She fought us every step of the way.

My Dad came with us to the appointment because Ernesto had to work. Grace was so manic and hyper and could not focus on anything. Thank God my dad came with us because 15 minutes in she lost her mind, running around and screaming. The nurse came in to get her vitals. I lifted her 45 pound fighting body onto the table. This is usually her favorite part. Not this particular day, she hit the nurse repeatedly. My chest became red with anxiety and embarrassment. While Grace ran up and down the halls with Pop Pop, I sat in the exam room and waited for the Dr.

It felt like forever, of course. I questioned myself over and over. Am I doing the right thing? If he doesn't come in 5 minutes it is not meant to be and we should just go. OK, if he doesn't come in 1 more minute we are leaving. Does she really need medicine? A minute flew by. I heard her noises echoing down the hall way. I had a whole verse planned out what I would say and ask. I looked at my phone...OK 30 more seconds and we are out of here. Yea We are out of here. Enter Neurologist, figures. 

Honestly I do not remember anything from talking to him. He saw all of my scratches, I retold the events from Sunday. It all went so fast I asked a million questions he told me a load of information, gave me a prescription, examined Grace, and it was over. We went back to the waiting room, and Grace had a meltdown. The one thing that I did remember was he said we have to improve the quality of her life. The office is also a typical pediatrician office, so of course that side of the room just stared at us.We finally get her in the car, and I start driving. SLAM a full juice box hits me in the mouth and I almost crash the car. I do not even say anything to her because she was startled by the jerking of the car and loud bang when it bottomed out. The whole way home she tried to escape out of her car seat.

My dad waited with her in the car while I ran into CVS. As I waited on the drop off line, I replayed the whole day, I stepped to the counter handed the technician Grace's prescription and closed my eyes. She was checking to see if they had it in stock. I took a deep breath let out a sigh and I whispered to myself, "It is time."


We are reaching day 7 on new medicine, 1 dose in the morning 1 at night. Grace has slept 10 hours a night since we started the meds. Are meds for every ASD child? No. But they are working for us. She is not cured of course. But she is way more happy and way more easy going. I have noticed and increase in scripting. I am attributing that to the decrease in aggression. Major decrease. I have been charting her aggression, she is only hitting us 2-3 times a day lasting less than 30 seconds, where before we were getting hit NO EXAGGERATION 10-20 (or more if there is no school) times a day lasting 5-10 minutes. 

Honestly, I feel like I am living a dream. Ernesto and Me smile at each other constantly watching her. She is so stable and focused (for her hehe) and just so calm. It didn't change her, it made her a better Grace. Her whole entire team at school reports she has made leaps and bounds in just one week. Of course it has only been a week, and I am still skeptical. Like when will this stop working? When will she need the higher dose? Is this the right thing to start so young? Every time I fill the oral syringe I second guess myself and push the lump down in my throat. I squirt it in her almond milk or her breakfast shake and stir it in. I watch her carefully as she sucks down the chemical and pray for a good day. So far so good. One day at a time right? 

The first weekend Grace on her new medicine. We went out 3 days in a row and had not 1 transition issue. This is an example of an AMAZING WEEKEND :)

Sunday, April 7, 2013

My Daughter with ASD Hits Me

     My daughter hits me. She has been hitting me since, jeez, a long time. I know it is out of anger and frustration. But, sometimes I just can not take it. She gets into these meltdowns and it is like she is not even there, like it is not her. She punches, scratches, kicks, bites, pulls hair, and throws anything she can. When she does this, for me, it is the saddest thing to watch, To see your daughter lose control of her entire being and just want to hurt who ever is in her path, because there is a connection missing in her thought process. And me? I feel powerless. There are times where is has gotten so bad I just let her lash into me with her nails. 

We modified her diet about 4 or 5 months ago and we saw great changes, but up until last week we hit a wall, we only got so far. Last week she had off for Spring break, and she was 2 weeks post her surgery. The first weekend of her vacation she got a fever. Before her oral surgery her stim behavior was grinding her teeth, but now she is unable to grind. So she started licking her lips. That whole week she licked her lips until they were black. By mid week her lips were a mess and so was her behavior. She consciously could not stop licking her lips, it became a compulsion. She would lick scream in pain hit me then lick them again. I could not get her to bathe, change her clothes, brush her teeth, brush her hair, or sleep or eat for 5 days straight. By the 4th day I was in a fog from her screaming all day and all night, but still licking and biting her lips. We tried everything. I took her to the pediatrician, but they did not understand the severity of the situation and the obsessive stim behavior of it and gave us aquafor and antibiotics and sent us on our way. On top of all of this she had strep too. I was at a loss and just went a long with what she was doing. Her lips were now black.

Easter Sunday she took a 3 hour nap and I was relieved she was finally sound sleeping. She woke up from her nap in horrible pain. I could see it in her face. She was unable to regulate her internal and external environment. She licked her lips and screamed then hit me. I would leave the room, she would cry for me, I would enter the room she would tell me to get out. We did this for about an hour. 

The pain got so bad she jumped up and just screamed out as loud as she could. Threw anything across the room she could get her hands on. I saw her pain. But there was nothing I could do. She would not let me console her or even touch her at this point. (at times like these we usually restrain her but I did not have it in me because of the amount of pain she was in). I saw something change in her eyes. There it was, that glare in her eye where she can not control her self and it gets bad. I braced myself. She came at me full force and scratched my arm with all five fingers, natural instinct pulled her hand away and tried to get her to stop. Mother of Autism instinct knew there was no stopping her and if scratching me gives her a little relief then so be it. I watched her grunt and scratch my arms, I took deep breaths as her nails scraped into, then down my skin. She moved to my neck ripped my chain, and dug into my neck. At this point I began to cry, For me? NO! For my  baby, who I could not help. I felt helpless, there was nothing I could do. My arms began to bleed, and she spotted the blood. She looked me in the eyes in shock and began to cry. Her sweaty little body fell into my arms. I held her and rocked her and we cried. I held her as close to my body as I could. I could feel her heart racing a mile a minute. "I am sorry MOMMY i am so sorry" she yelped with tears running down her face. 

After I calmed her I had this cool numb feeling running through my body. I just didn't feel right. I was fighting my human instincts to be mad and want to fight back. It was not sitting well with me. I called Ernesto at work. "Hey, you need to come home, everyone is alright but you  need to come home." I cried, again, then hung up the phone. Ernesto came home and saw the look in my eyes and the sight of my arms and neck. His eyes welled up with tears and he just held me. I took a deep breath and explained as much as I could. At this point Grace had snapped out of it and seemed to be ok. He sat and played with her while I just sat in the other room and stared at the wall and thought, WHAT are we going to do?

That night Ernesto and Me were laying in bed staring at the ceiling and we both knew it was time to really start considering MEDS. be continued...