He loves pin-wheels!

Friday, March 4, 2011

I haven't written much the last little while. I caught Trevor's cold.  I am finally recovering from a respiratory infection-- at least it wasn't full blown pneumonia like Trevor.

Since I last wrote a beautiful little boy with autism died in a tragic accident. His family lives just a few blocks away and they attend our church. He was 10 yrs. old and wanted to be baptised, although he didn't need to. The elders had been working with him to prepare.  Because his mother was single the elders had to bring a member along to the visits and my husband was lucky enough to go along for several visits. The elders had been teaching him to pray properly and apparently it had been a struggle.

Sunday evening he was asked to take a shower. He decided to take a bath instead and didn't tell anyone. After a short while his family started to wonder where he was and went to check on him. His uncle, who was living with them to help with His care, found him drowned after having a seizure in the tub.

This child was loved by many many people. His family had done everything in his power to give him a good. life. Raising a child with special needs is more challenging than I can say. As a mother of a child with autism who has sacrificed many of my own goals, needs and relationships I cannot imagine losing the only thing worthy of that.

We attended the funeral. At the viewing Trevor was very quiet. It was like he knew that we were somewhere special.  The little boy was dressed in a little suit. He looked handsome and peaceful. He was holding a little orange matchbox car in his hand (probably his favorite). It was EXACTLY like one that Trevor plays with. Suddenly the moment became very real for me. This could easily have been my son.

Inside the coffin was taped the instructions for how to pray, a picture of his cat, an old ratty stuffed animal and pinned to his shirt was one of the missionaries' name badges.

It was very emotional and beautiful. I was very happy that we were able to go and remember this amazing little boy's life.

We have heard about many other deaths and serious injuries of autistic children in our community. Last summer a child somehow fell out of a window. You are probably thinking that the parent was to blame, however many of these little kiddos have something called SPD-- Sensory Processing Disorder. Some kids require more 'input' of their senses to feel regulated. This could include seeking out really strong odors, or eating things that are very flavored (not even always edible things). They may like to be up high and jump off of high things-- and because they have a very high tolerance for pain they can get injured and be eager to do it again. They often like unique textures or need to experience things in their mouths or touch things that are hot. Trevor likes to have his body squeezed very tight, especially his head, and he insists the TV is always on. Sometime it is very hard to find ways to keep them stimulated and so they go searching for things that often are very unusual to someone not familiar to the disorder. Trevor has this disorder.

 As you can imagine there are also kids with SPD that have the opposite problem and cannot stand very much input-- they hate colorful things, many foods, noises, smells, fabrics etc. Trevor has an unusual form of SPD, where he has both a huge need for input and major aversions to some stimuli. We never know from day to day, minute to minute what his body will need. He has a lot of tantrums, often violent because he cant tell us what he needs or what is bothering him.

Maybe this mom had done everything imaginable to keep her child from the windows-- child proof them, blocked them but, his desperate need for input just took over and he finally made it out in the split second she wasn't looking.

Another child was actually taken from his family. He 'needed' to be told by his family any time they were leaving the house or he would get very upset. One day his mother ran out to the car to grab something and thought he wouldn't notice and when he did he split his head on the fireplace mantle. I could totally see myself thinking-- 'well I am not actually leaving and he is busy doing something' etc. and the same thing happening to me.

You can't imagine the pressure I am under and the anxiety I feel raising a child with no ability to anticipate danger, who enjoys pain, who either loves or hates almost any sensation or noise-- and on top of that cannot communicate. Any parent is destined to miss something eventually.

I have seen trevor try to chase cars, get into the washing machine, run for the pool without me, bang his head, climb on everything imaginable, jump off everything imaginable and much more.

One glimmer of hope it that Trevor is learning to point in school and I am so excited about what that will do for him. He is also learning to respond to his name. I am so excited!

Thursday, March 3, 2011

The Birth Story

I was asked to give some info about Trevor's birth.  Here is our story:

My husband and I had only been married for three months when we found out we were expecting and we were so excited!

I had trevor the day after I graduated from college.  I had a pretty easy pregnancy although very busy in my last semester and also working part time as a nanny.
The day Trevor was born I went to the hospital in a lot of pain. I knew it was time, but I felt that something was wrong. The unit was totally swamped and there was no room for us. The nurses brought us into a basic exam room and hooked me up to some machines and asked me to wait. We were there for a long time while the machine's alarms that were going off.  We were terrified because we knew something was wrong but there was no one to help us. One time a nurse came in a told me that the baby wasnt getting enough oxygen and that I needed to try to breath deeper. They hooked me up to some oxygen and then left. The alarms continued to ring out! We were there a long time. Levi, my husband, even got up and went searching for someone to help us but everyone was tucked away in rooms helping other patients. The alarms screaming; levi and I just held each other and prayed for some help or some comfort. I cried a lot because I knew the baby was in trouble.

Finally, at some point, a nurse came in to check on me and found that I wasnt progressing very much and decided to break my water. My water was green--merconium. Which means that the baby was under so much stress that he pooped inside my body and had likely breathed in the contaminated fluid.

Within 30 minutes Trevor was removed by c-sec and was rushed out of the room. Neither of us was allowed to see him. They wheeled me to a recovery room and left me there alone while they tried to save my baby. I was there for a long time crying by myself, while my husband had been lead back to our room where my mom was waiting.

As it turned out Trevor had been breathing the merconium. He was in the NICU in an incubator and recieving help breathing and getting lots of meds. We found out that he had been stuck inside me and that he had been put in danger because of the way my body is shaped-- I now know that I am not able to have children vaginally, and that, had we continued to labor, we would have lost him. In addition his embellical cord was in a knot and restricting his oxygen. It was fortunate he survived.

The next day I was wheeled in to look at him but it was a few days before I could hold him.

While we were in the operating room and I was really doped up my husband claims that I kept asking if the baby has downs syndrome. I remember that we didnt have the money to pay for the testing to check for that prenatally. I dont know why that was on my mind so much. Funny. I guess I just knew something was wrong.

Months later we found out he had autism.  I knew from an early age because I had studied it in college but he was 18 months before recieving a proper diagnosis and I finally felt justified and he started getting the help he needed.

We have been down a very tough road. Trevor has a very difficult life. Sometimes I feel like a prisoner. He doesn't like to be away from the house or around people. He often freaks out when we are in public places. Its been hard even to go to church, which I need to survive. I sometimes wish it had been downs syndrome becuase then people would be able to recognize that he was disabled. I get plenty of parenting advice and dirty looks when we are out and about. People dont understand.  He cant even talk. Sometimes I pretend to disapline him for other peoples sake.

He is also not very loving and doesn't like to be touched, and I tend to be a very affectionate. I remember learning about autism and thinking that that would be the absolute worst thing that could happent to me as a parent. I need his love, yet he cant express it the way I need. Children wtih Downs are usually very affectionate and loving.

Since Trevor was diagnosed I have gained 30 lbs. I am just starting to pull myself together. Utah doesnt require insurance companies to cover treatment for autism (yet) so it has been difficult to get him the help he needs. He is currently on scholarship at a very good school for kids with autism and is doing better all the time.

I do tons of research on autism and am always trying out new diets and therapys and ways to calm and comfort him. We have to do almost everything for him and its getting harder and harder the bigger he gets.  But we love him! And so its no problem!

I have many many stories of the strange things I have had to do to keep him safe or calm him down. Things I never thought I would do. That is why I started this blog. I know getting it all down will help me not to be angry and to laugh at all of our silly adventures.

Sunday, February 20, 2011

I can't sleep. I am exhausted but I think I had too much diet coke tonight because I have energy. I thought I would write a quick update.

Trevor had a good night with my parents. I mentioned his bedtime ritual. It consists of him taking him melatonin and then having his shower (yes my 3 yr. old showers), which I feel helps him to relax and let it kick in. Apparently my mom totally undressed him before letting the water warm up and he pee-ed on the bathroom rug. That is just great.

Trevor seems totally un aware of his own body. Many 3 1/2 year olds are potty trained but he is on a completely different planet when it comes to that stuff. The only other time he pee-ed on the floor was about 6 months ago when he got away from me while I was changing a diaper. He started going on the floor in the hallway and as it hit the carpet, the wetness splashed back up at him and scared him half to death.  He had no idea what was going on. It was actually really sad.

Many people with autism are never able to be potty trained and I am prepared for that possibility. much as you can be. Diapers are expensive and gross. I dont want to be changing him when I am aging and tired. But a lot of things in life don't turn out the way you planned. Trevor's autism has caused a lot of change around here. Most of it has been difficult.

There is an older woman who lives close by that owns a laundromat. I clean it for her sometimes to earn extra money for our family. One day she asked me how things were going and I simply smiled and said, "oh, good." But then she asked me again, and I told her that honestly 'we are just hanging in there the best we can.' She said that she respected us for everything we are doing for Trevor. Right then I had one of those out of body experiences where I responded to her, but it wasnt until I got into the car and thought over the conversation that I really realized what I said. I said "well, I love him so it's no trouble."

That is the truth. No matter if your child has special needs or is typically developing, no matter what they just destroyed or the fact that they just hit you or pee-ed on the carpet, you love them and somehow that is just enough to keep you going.  Goodnight.

Saturday, February 19, 2011


Trevor is just getting over pneumonia. He has been home for a week from school, recovering, and we have had just about enough of each other. Last night when my husband got out of the shower he had some big scratches on his forehead-- from Trevor. Poor man. He is usually the one getting injured when Trevor has a meltdown. Last night it was because Trevor didn't want to use the nebulizer.  We have to give him medicine every 4 to 6 hrs. and the machine is pretty loud-- never a good thing for an autistic kiddo.

I think I might be coming down with Trevor's  cold.  I feel terrible today. I was laying in bed and Trevor came into the room and headed straight for the big mirrors in the bathroom. Today (like others) he attempted to 'trick' the mirrors. He stood in front of them, lifted up his shirt and stuck out his tongue and wiggled it.  Apparently his reflection did the same thing because he further 'challenged' it. He stuck his little arms straight out to the side and then slowly raised them over his head. He moved around in front of the mirror with his gaze locked on his reflection.

I know the mirror is a very curious thing for Trevor. He is trying to figure mirrors out. I remember when he first discovered them. He was just walking past it one day and suddenly he realized that it did exactly what he did. (to be honest I dont think he even knows its him looking back. Its like he thinks its this really annoying kid that keeps copying him and he is hoping to catch him making a mistake). That day he ran back and forth in front of the mirror at different speeds to see what would happen. Next he ran in front of the mirror while clapping.  He bent himself at the waist and tried to look at the mirror from upside down. He ran and got a toy from his room and brought it back and sure enough the mirror had the same toy! Ever since that day there has been an ongoing conflict between Trevor and the mirror. I wish he could talk so that I could explain to him. I wish he could recognize himself. Trevor is only 3 and I know that will come with time.

Tonight we are supposed to be going out with some friends and my parents are coming over to watch Trevor and put him to bed.  He is tricky to put to bed. There is this whole routine as well and giving him melatonin and two other meds to help him sleep. Trevor has seen many many specialists and we have a big medical suppot system.

--Okay, I'm back. Since writing the above Trevor came and grabbed my hand and dragged me to the refrigerator and threw my hand at the door handle. This is how he tells me that he is hungry. For the last week the only thing he will eat is strawberry 'Dananino' yogurt cups. He averages about 18 a day. Luckily they are only $2.14 for a pack of 6 and $1.88 on sale.  We have bought out almost every store in the area. Yesterday we went to my moms and I stopped by her grocery store and bought several more packs. I know you are probably thinking that I am an irresponsible mother to allow my child to eat nothing but yogurt--unless you have a child with autism.  Then you know that if that is what he wants- then I have no choice. Yesterday I pinned him down and fed him a gold fish cracker and he almost vomited it up. Then he started shouting nonsense and growling at me. I shouldn't have forced him, but he is so skinny and just a week ago he loved them. I thought I could remind him how good they are and he would smile and show me some love. On top of that his bowel movements have been something out of a horror movie. A terrible shade of pale spring green and about he consistency of soft serve. Yesterday my mom changed one in the morning and my husband changed the other! Yeah!  And now I have two people that unserstand my pain. Right now he smells pretty foul and so I better go and tend to my motherly duties.

Tomorrow I will try to post a picture of him with the nebulizer mask on. He is so cute! Happy Saturday!