Are You Gabriel's Mother?

According to Autism Speaks, (http://www.autismspeaks.org/family-services/autism-safety-project/abuse) children with disabilities are twice as likely as neurotypical children to be abused physically or sexually. I read numerous reports about these children. Today, I read about parents in Anahheim, accused of keeping their 11 year old son with autism in a dog crate. (www.google.com/url?sa=t&rct=j&q=&esrc=s&source=newssearch&cd=1&ved=0CB4QqQIoADAA&url=http%3A%2F%2Fktla.com%2F2014%2F07%2F02%2Fparents-arrested-after-11-year-old-autistic-boy-found-living-in-cage-anaheim-police%2F&ei=vrO1U7LIJKqlsQSi4IDwCw&usg=AFQjCNEWo9KVewqPyjPMnsR317tg-Oy7Bw&sig2=EKI4pvmREpsJWpZN8A-KWw)
Gabriel is only a year and a half younger than this child. I am sick to my stomach. How could someone even consider a dog crate as an acceptable means of controlling a child? How can that thought even cross an adult's mind? It is my deepest hope that the child can recovery from such deplorable actions.
A couple weeks before the school year was complete, two officers knocked on my door in the morning. My house was messy and I was tired. I had to answer my door without a bra on and for some reason, this is an awful situation for me.
My mind raced. Did Alex and Andrew make it to school and work okay? Did something awful happen? Are we being arrested for something I was completely unaware of? My heart was beating out of my chest and I even thought about hiding in my bedroom. However, I knew that hiding wouldn't make these officers or the situation go away.
I opened the door. My hand was shaking. I glanced around the entryway and noted an old crib mattress to the side of the door. The day before, I brought it down to throw away and Gabriel had stripped the cloth off it to turn the coils into a fun play thing to jump on. It made everything look trashy. (great)
The conversation went something like this: "do you know Gabriel?" "yes, I'm his mother, why? " "We need to discuss something with you." Gabriel and Lane run to the door, smiling and laughing. They wave sweetly to the officers and say, "hi!"
They had to discuss a report that was filed at the school by an adult. Gabriel made sexual gestures and remarks that were not appropriate for a child his age. If you know Gabriel, he doesn't have a clue about sexual terms or sexuality. He's a very naive boy and I'm fine with that at age 9.
I think I argued with with officers and told them that was disgusting and how dare someone accuse my child of something like that. Trust me, my children are not angels but I also know what my children are capable of doing and sexual activities aren't one of them. The officers explained that they would file the report, investigators would be at my home, and they would follow up to find out who was sexually abusing my child.
There it is... the tip of my emotional ice berg that is shattering. My husband and I spent hours figuring out our rights should we be accused of something horrible. I was sick to my stomach and could barely function thinking about someone hurting my child. The school is the safe zone for children. Did someone think Andrew or I hurt Gabriel? This is his other safe zone. I called the doctor and asked what we should do for him. I confided in a few friends. I cried. (a lot)
Later in the afternoon, the doorbell rang again. "What now?!" I thought. A DCF investigator stood at my door. She spent over three hours interviewing me, looking around at my home, and playing with my children. It was awkward, at best.
It wasn't until she had been here for two hours that she told me that my husband and I were not suspects. No one thought we did anything inappropriate. I could breathe a little bit after those two hours with her.
Sadly, I haven't really considered sexual abuse against my sons. I think about what could happen to our daughter. Statistics show that boys also experience some form of sexual abuse. I would guess I'm not the only person with this misconception.

(from the National Child Traumatic Stress Network)

An investigator with the sheriff's office also interviewed all of us, including Gabriel, a week later. I asked for the extensive notes and behavior reports from the school. I had copies but never saw anything of concern in the paperwork. Nothing existed that indicated any sexual behavior happened at the school.
I am glad that I didn't know who reported the incident at the school, though I have my suspicions. I am also glad that I didn't know who was alleged accused either. I do not know how I would have reacted toward that person.
We finally heard that our case was closed with both the sheriff's office and DCF. They found no wrong doing and didn't charge anyone.
Most likely, we will never know what happened. Was he abused? Was it all a misinterpreted conversation by an untrained staff member? Was he set up to say and do awful things? Was it a lie for retaliation against us, his parents? My gut instinct is that nothing happened. I can't decide if he was set up for retaliation or not. It is disturbing that I am happy if we were set up to leave the school because at least then my child wasn't abused sexually. Either way, it will take a while to gather my shattered pieces of trust. (which wasn't very strong before this incident)

Chiari, You Suck

Since receiving Gabriel's chiari diagnosis, we have been on a roller coaster. This is a new "normal" we are still adjusting to and I don't know if it will ever feel like a normal day again. We were told to prepare for a surgery discussion over two months ago when we scheduled the first neurosurgery appointment. We spent several days researching and preparing to make the best decision for Gabriel.
When we went to the appointment, we were prepared emotionally for a discussion about the surgeon cutting his skull open and removing a section of his skull as well as a portion of his cerebellum. As possible as that is for parents any way. We went with the three children since we don't have a reliable babysitter right now and talked to a pediatric neurosurgeon. I, mean, seriously, these kinds of specialists shouldn't even exist. Neurosurgery and child should not be a statement anyone makes, ever.
The surgeon believed Gabriel had tethered cord syndrome and needed an MRI to determine if a tethered spinal cord was pulling his cerebellum down. He said that was a surgery that was much easier in terms of recovery and would alleviate the chiari symptoms. He has also seen autistic symptoms get better for some reason after TCS surgery. The surgery involves cutting the frayed spinal cord.
I scheduled the second MRI for a month later. I had to drive Gabriel for an early morning MRI. It was the longest 40 minutes I've spent in the car with him. He ripped my hair out of my head. He bit me. He hit me. He tried to fling himself out of the front passenger door into traffic. I don't know how we made it to the hospital but by the grace of G-d, we safely arrived.
After he hit an adult working at the hospital, I had to walk holding his hands while he screamed and cried about going to the hospital. Gabriel is 9 years old, almost 4'5" tall and 62 lbs. He is strong and smart. However, he can't communicate about what is upsetting him or how I can help him.
We made it to the elevators. I waited for the first elevator and I kid you not, another mom with her son, jumped on the elevator. She smiled at me and said, "come on, there's room." I just stared. I had tears rolling down my face because I was already emotionally exhausted and physically tired. Here was this oblivious woman asking me to join her on the elevator. Is she NUTS!!?! She repeated her statement and I had to explain that we would wait longer for the next elevator because I didn't want my son to hurt anyone.
Eventually we made our way to the MRI. I was able to get two people to help Gabriel and keep him occupied. A child life specialist we worked with brought more activities and a projector that created stars in our waiting room. The procedure went well. He woke slowly from anesthesia and we were on our way.
Andrew and Lane joined us at the hospital. Gabriel had an enormous meltdown on the way home. Andrew pulled the car over and we had to leave it in a parking lot in order for one of us to drive and the other to hold Gabriel safely. He didn't know how I managed to get to the hospital earlier that day. I am not entirely sure either. I can not effectively explain how awful his behavior was on the way home.
The results came back later that day. Gabriel does not have tethered cord syndrome. We have to keep a three month journal of his symptoms and return to discuss everything the end of July. We aren't meeting with same surgeon, but someone who works with him. Our neurosurgeon is in charge of the entire department.
A couple days ago we met with our wonderful neurologist. She informed us that our NS would like to move our appointment up almost four weeks and discuss surgery and pre-op. He wants to discuss performing surgery as early as two weeks so Gabriel has the opportunity to recover before school begins in August.
I can not stop thinking about our upcoming appointment and probable surgery. I feel helpless when considering handing my precious son over to a stranger. I can not believe that surgery won't cure his pain, only possibly help. I have to find a way to believe that this stranger can remove a portion of his skull and his brain and safely give my son back to me. That is a lot of faith and hope. As I contemplate these feelings and procedures, I eat ice cream. Lots of ice cream. Salad just doesn't cut it today as I think about brain surgery.

Here are several post-op photos from decompression surgery. These chiari warriors gave me permission to post their photos and I am grateful for their generosity.

I Wish Her Well

Lane was in a helping mood after school tonight. She helped me clean our dining room chairs by scrubbing the wood and the cloth seats. I asked her to grab some of the white rags and towels to lay on the wet cushions. 

She held up a handmade towel and told me that it was really pretty.  The girl in the picture reminded her of Goldilocks. The stitched girl looked nothing like Goldilocks but since her school day revolved around the three bears, she had Goldilocks on her mind. 

I explained that her great great grandmother made the towel.  She asked me where this grandma is right now. I told her that Gram died when she was five months old. 

Lane looked at me and said, "well, I wish her well."

Yes, Lane, we wish her well. I like that statement.  We wish many people who are no longer here well.  We wish them well. What a smart four year old.  

Houdini

Gabriel has become a challenge to take anywhere in the car.  It began the end of April or beginning of May when he decided he wanted he didn't want to escape the van. He was able to jump in the front seat and open the door while I drove on a busy highway.  Thank God I was able to grab his shirt while maneuvering the van to the side of the highway.  

Things have become increasingly challenging. He rips hair our of hair, bites, hits, and kicks while we attempt to drive. I take vehicle safety seriously and I want to vomit every time his aggressive behavior rears its ugly head in the car. 

We don't know when he will want to escape from the car or when he will be fine traveling somewhere.  One particularly bad incident lasted for over an hour.  I was happy to have Andrew in the car with me so one of us could work with Gabriel while the other drove.  I picked the Gabriel challenge which resulted in multiple bites and bruises. Another incident was scary when Gabriel grabbed the key out of the ignition when I pulled into a parking lot. I wasn't expecting that maneuver. 

Our behavior therapist suggested a car safety vest.  I have been stuck in the house for a few weeks because I can't trust his reactions in the car. I ordered the EZ On vest for him

This photo is from espcialneeds.com
The online photos show children with huge smiles as they wear their vest in the car. I was skeptical.   I approached Gabriel with the new vest and explained that it was cool like a race car driver and showed him photos of the race car drivers in safety vests.  

It did not work  

He hates the thing. He strapped him in it because we want to do something as a family.  I'm sick of staying at home all the time and so are his siblings.  We are going stir crazy.

Then there is the battle in my head.  He hates gojng anywhere so should I push him to go places?  On the other hand, he needs to continue to work on typical situations and learn how to react appropriately.

My child escaped the vest!  Of course my hypotonia child would be able to wiggle out of the vest. He had a monstrous grin on his face as he explained that he did not want to use the ugly red vest.  

My hope is that in our haste, we used the device incorrectly.  It's an expensive piece of equipment so I hope we can make some adjustments and get all of is out of the house again! 

VPK

We decided to sign Lane up for voluntary pre-kindergarten (VPK) this summer. We had planned to send her this fall and wait for kindergarten even though she will be five the end of June. However, she isn't able to go to VPK in the fall because she will be five years old. Our plan also changed when Gabriel's behavior became more challenging. We want her to do something other than cope with her brother's challenges over the summer break.
I called 4C to make an appointment for Lane's VPK certificate. I explained that I would need to make the appointment as efficient as possible because I don't know what the day will bring for Gabriel. I asked her to make a note that he has autism and it was vital to swoop us in as soon as we arrived. She told me that it wouldn't be a problem.
From what I can tell, 4C also registers families for early Head Start, Head Start, and food programs. It's a varied mixture of mothers (there were no fathers in the office), from different cultures and socioeconomic backgrounds. I will let the reader develop their own opinion on that without my description of what I saw.
I am rarely late for appointments. I am the opposite - Andrew has influenced me to be paranoid about being late - so I am usually early. On my way to the appointment, about 35 to 40 minutes away, a Dr. called me about our last IEP meeting that she attended with us. She had several suggestions and a lot of encouragement for me. I knew I would be a little late for our appointment but I had to squelch my inner turmoil and remind myself that this Dr. is extremely busy and her time and knowledge trumped my timely arrival to an appointment.
I was ten minutes late. I walked in and apologized to the front desk person. I told her that I would be more than happy to reschedule if necessary. She was stone cold and unkind when she handed me the paperwork. Gabriel and Lane played well with the few toys available in the waiting area. I quickly filled out the paperwork.
In the meantime, a young mother walked in with her adorable two-ish year old. I watched out of the corner of my eye to make sure things continued to go well. Lane told Gabriel that it was time to put all of the dolls away.
If I haven't explained the autism mind of Gabriel well, this might give some insight. When his sister says that it's time to put ALL the dolls away and he agrees, that means ALL the dolls need to be put away at that moment. It might mean the dolls need to stay in their slots for the duration of our stay. At least he's picking up their mess, right?
The two year old grabbed on the of dolls Gabriel put away and Gabriel pulled it back from her hands. I crossed the little waiting area as the mom pulled the doll from Gabriel's hands and he explained, "but we have to put it away." She handed the doll back to her two year old. Maybe that was an appropriate thing for her to do if Gabriel was a NT child, I don't know. Since the two year old wasn't phased by the doll being removed by the older child, maybe it was best to just let it go. (insert the popular song "Let It Go" if you like)

When I reached the problem area, the Mom, Gabriel, and the two year old were yanking on this doll. I told Gabriel that the little girl wanted to play with it and he should consider giving it back to her. He started escalating and yelled that the dolls needed to be put away. (Oh crap, escalating is NOT a good thing lately) I inwardly panicked. The mom said, "it doesn't matter, he shouldn't take it from her." I replied, "I completely understand. Unfortunately, he has autism and I need to work with him on this."
The two year old didn't really care about the doll but she kept her hand on it. Gabriel yelled, "I want the doll!!" The mom says, "but you shouldn't take it from a little girl!!" I said, "listen, I'm glad you don't have to deal with autism in your world. I'm trying here. Would you like me to explain autism to you?" Gabriel continues to yell, "put the doll away! We have to put the doll away!!!" The other mom yells again, "you shouldn't take it from my daughter!"
I said, "YOU, miss, are rude." ( I really wanted to say "F YOU but I didn't want to get kicked out of the office."
I held Gabriel by the wrists and went to the receptionist's desk and asked where I could take my escalating child who has autism.
I kid you not - she said "the restroom." Gabriel screams, "I AM NOT GOING IN A DIRTY BATHROOM!" I calmly stated, "No Gabriel I'm not helping you in a bathroom of all places." "But there isn't anywhere else to go," she replied.
I wanted to bang my head on the wall or shoot myself. For the love of everything, the bathroom? I saw an area with an empty table down the hallway and took him there. While he continued to escalate, he hit me and kicked me. He wanted to escape the situation and I don't blame him but I couldn't let him hurt the two year old who wouldn't put the doll away. In his mind, that doll still needed to be put away. There is no reasoning and discussing matters like this. That's why it's called autism. It doesn't make sense to the rest of us. I don't know if I handled the situation correctly but I did the best I could given the heat of the moment.
Gabriel ran past me at one point and went straight for the dolls. I redirected him and the mom said, "oh, I can take my daughter to the other side so he can play here." I couldn't help myself and said, "Thanks any way but it's too late now. You made your feelings clear."
Finally the manager of the office came out and asked how she could help me. I asked her to please get the certificate filled out as quickly as possible and apologized several times. She offered books and stickers but Gabriel wasn't in the mood for kind gestures. Lane was thrilled with stickers though. It didn't take long for the paperwork to get filled out and we were on our way.
Where is that bubble I can move to where everyone helps and accepts each other no matter what their background or disability? I'm going there.

41... How Can That Be?

How can I be 41 years old? I'm pretty sure I just graduated from high school ten years ago. That would make me closer to 28 years old. I definitely feel closer to 30 than 41.
We had a quiet family day to accommodate everyone. We went to the outlet mall and I found some new summer clothes. Gabriel saw the trolley going around the outlet mall and insisted on riding it with Andrew. As they rode the trolley around the parking lot, Lane and Alex helped me pick out shirts. Lane's taste is more flashy than mine and it should be since we're 36 years apart in age. I purchased her picks and I actually like them. She has good taste already at the young age of four.
We had lunch at one of our favorite restaurants on the beach. Gabriel had a rough transition and threw silverware at the next table. I apologized to everyone around us, ordered a mojito, and I kid you not, I was complimented for my patience in the situation. The waitress even high-fived me. I thought that deserve a beer as well.
We ventured out to the beach where we made me friends with a mom with two young children. The five kids threw little balls at an exposed concrete pipe. It was a gorgeous day at the beach. The salty breeze was almost chilly for a day in the middle of May. 

Okay, forties, I'm ready to conquer you. Now that I'm into the 40's, it's time for more personal growth and commitment to myself. I've lost that while taking care of everyone else for the past ten years. I love my job as a mom but I need to be healthy in order to continue doing my demanding yet beautiful job.

Surprise for me

I'm friends with many special needs moms.   One very good friend who also has two children on the spectrum invited is to her home for a BBQ and swimming. I looked forward to the day away from usual challenges at home. 

The drive is an hour and a half and Gabriel made most of it difficult. He didn't want to be in the van and would have jumped out if given the opportunity.  Since I wouldn't allow his escape, he became aggressive. It was a long hour and a half for me. 

I texted my friend and she said, " keep coming."  I thought, "we are this far, we might as well keep going but I was not thrilled to push through this necessary lesson for Gabriel."  I have many bruises and bite marks to prove my struggles. 

When we arrived, two other adults and another child was at her home. I sat with Gabriel until he was ready to go to the pool.  I was slightly confused as to why my friend had other people at our get together but it is her home so I wasn't about to say anything. 

Once Gabriel was ready to go to the back yard, my friend told me that the other women were behavioral therapists. Awesome!  Even better, my friend planned to take me to lunch and another friend met us there!!! 

I felt so spoiled.  Time away from my responsibilities and Andrew had extensive professional help.  

We chose to stay at the beach last minute.  The area isn't busy yet so the hotel rooms are reasonable  This was our view for coffee in the morning.  Ahhhh- bliss. 

I'm glad my kids enjoy the beach. 

We were also able to go to an outside restaurant. Gabriel gets overwhelmed in restaurants lately so this was a nice treat for is.  The kids fed the fish and we created nice family memories.  Given everything going on right now, we really needed this break.