Documenting - September 2009

It's been awhile since I've written, and one reason that brought me back was the documentation journal that this blog provided me. The other is the outlet to get it all off my chest.

The summer overall was rough as we began seeing behavioral problems surface in John that we hadn't had before. We have analyzed each week with our own interpretations, biases, and "Best Guesses". Some of the reasonings we used were the lack of schedule and routine, too much high fructose corn syrup in his diet, a delayed developmental phase of terrible twos that appeared inappropriate for our almost 4-year old son, John discovering and learning where the discipline line was, etc.

Some of the things we have begun to see are:

• bolting to a different room in the house when something is upsetting, and "destroying" organization in that room, whether that be dumping books, blocks, or toys on the floor, ripping up paper, spilling a glass of juice on purpose, pushing the ice maker dispenser button so ice hits the floor, or banging a toy on a glass window.
• out of control emotional responses to his feelings
• inability to re-gain composure with an intense emotional meltdown that includes hurting himself during discipline (bumping head on wall, slamming hands on different surfaces)
• anger management issues
• Emotional responses leading to above behavior when someone tells him he can't do something
• whimpering and withdrawing when triggered
  
• preference to go to sleep when upset (another withdrawing sign)
• Disinterest in potty training anymore, regressing to almost infancy again
• Pushing mattress off bed and sleeping on box springs, preferring the weight of the mattress on legs and back at times (sensory pressure)
• Fleeing in opposite direction in public when he was upset and didn't want to be where we were, with no regard for safety
  

In response to this, we visited the autistic specialist again, looking for advice for schooling (since we've been denied services through the school district), advice for the behavior at home, and advice about his clumsiness/ankle issues. (John kept twisting his ankle all summer; x-rays show nothing, but his ankles and feet physically look like they are growing improperly).

The doctor suggested a few things - speech therapy, occupational therapy to deal with sensory issues, an in home educator who can help with behavior issues, separation issues from me (since he was having a hard time at the end of the school year with fleeing to the parking lot looking for me, or wandering to Katie's classroom to find her), and a one-on-one aide in the classroom. We are also set to see an Orthopedist at the end of September for his ankles because she does agree that his ankles seem to be too floppy, no muscle tone, and are growing wrong.

Well, that all sounds fine, but when you are denied service, all of the cost for that therapy comes out of pocket. Occupational therapy is recommended 2 times a week at one hour each. I have been quoted up to $190/hour for this service. (that would be almost $400 a week for OT alone) We opted for an in-home teacher at $65/hour to get started.

We enrolled John at two preschools. On Monday and Friday, he goes to the school he went to last year, but we put him in with his own age. Last year, we put him in with the kids who were learning to talk since speech was so new, but he was with kids 1-1.5 years younger than him. So, this year, he is still the oldest in his class, but he's with the kids that turn 4 this school year. He's also at La Verne Parent Participation Preschool (LVPPP) on Tuesday and Thursday.

The first 2 weeks of school were awesome! He was soooo good! Anxiety caused him to chew on his shirt during class, but he had NO OTHER ISSUES at all!!! He has even got to a point where he is close to being potty trained again. It was even reported to me that he consoled a girl who was crying because she got hurt and he told her he'd hold her hand until she felt better. (He actually noticed someone else upset, recognized it, made the effort to socialize, and accurately followed through - way to go John!) Last Friday, Bonita Unified School District special education came and observed him because I appealed the IEP (Individualized Education Plan) last June. He did well that day.

Last Thursday, my husband left for a business trip in China and John came down with a cold. We've been trying to video conference through Skype so the kids can see Bill. John really likes it. The last two days have been draining. When we arrived at preschool, John began riding the bike around the playground the wrong way. He was corrected and told to go the right way. He got off his bike and began walking backwards around the playground, making his way to the bathroom. I was talking to his teacher and I saw this. I followed him, afraid he was looking to run down the hall. Instead, he said he had to go poopy. So, I stepped back to let him go. He started flushing the toilets over and over. I went over to him and asked him what was wrong. He wouldn't look at me and didn't say much. He said he wanted to wash his hands "all by himself" and then go home, so I told him I would sit on the bench and wait for him to wash his hands. then I would let him play on the playground and I would not leave him. I sat on the bench right outside the bathroom door as he watched me. He then turned to the sink and began angrily pushing the soap dispenser making a huge soapy mess in the bathroom. I ran back in and began cleaning it asking him what was wrong and he took off running down the hall. I finally found him in a classroom just standing near a shelf. He told me "I'm having a hard time. School is too crowded". I told him we'd go home.

At home, I set up an obstacle course in the living room, creating a surface to run through out of a memory foam mattress (which we called the mud), had him climb over the ottoman (the mountain), jump into the 4 hula loops laying on the ground, crawl on the box springs of the couch, slide down a cushion, push two exercise balls across the room, and bounce 10 times on another bouncy ball. He did this about 4 or 5 times, each time getting more and more tired. I made him finish the last one, which was a struggle (he went to his room wanting a nap), but he was very excited when he finished his last "Lap", asking for high tens, saying "I DID IT".

Today, he had LVPPP. He was excited to go because it was his share day. Each kid gets one day where they get to take the share bag home and are given a special color. They have to bring 5 objects that are that color and share it with the class. John got blue so he got to bring legos, Thomas the Train, a book, a post office wooden structure we have, and a car. He was ready. We got to school and he was supposed to "sign" in, a ritual they have the kids do. He was signing in the wrong area and he was corrected. He started "stabbing" the paper with the marker, then scribbled all over it, pushed the table around and then started writing all over the floor. I went to grab him and begun cleaning it up, when he ran to the other side of the classroom and started throwing the blocks all around the room. Parents were staring in shock, while the teacher and I dealt with it. A little girl came up to John and told him that he shouldn't throw when he's mad. The teacher is very good with John and she turned to me and told me she would call me if he wasn't doing well. I left and John had a few "sensory" things come up (where he wanted to use his hands in the paint instead of brushes, took off his shoes in the sand, etc.), but no more behavioral issues.

Tonight at home, John became out of control again, running around the house, destroying order and organization. I gave him a time out, during which, he was jumping up and down, throwing himself on the floor, and carrying on. I kept adding a minute every time he'd bang his head or slam his hands on the wall. Once the timer went off, the tears stopped, a huge smile came over his face and he ran to me for his "after time out hug". It's almost as if the timer beep is what he can use to bring the anger under control.

What I didn't know until later today was that Bonita Unified School district showed up yesterday at his preschool again for a second day of observation, that I was unaware of. She called today because she heard I had to take John home. So, I told her about the last two days. They are gong to observe him again next Monday.

I'm a video editor and I'm working on a large project on a Documentary on the Life of Fr. Damien. He is being named a Saint in October. We received a St. Damien medal recently and John has taken a fond interest in it. I also made duplications for a priest of the Damien chaplets with the prayers and songs you can say to Damien, asking him to pray to God and intercede on your behalf. The chaplets I made were on CD, so every once in awhile, I pull one out of the bunch and put it in to make sure the duplication burn was good. So, John has heard it play a lot. He learned the song before I did. He now takes his Damien medal to bed with him, and sings the song. I pray with him and it's cute to hear him ask Jesus and Fr. Damien for a "marigold" (miracle). I want to help John so much. He is doing so well from where we began 18 months ago, gaining speech, cognitive skills, reading skills, etc. But, emotionally, he's lost. There is this cloud that comes over him, his sensory information gets in the way at times, and he is out of sorts. I feel so bad for him and just want more than anything to give him peace and take away the anxiety he feels. The best I can do for him right now is pray that he gets his marigold.

Bad Days

Wow! I can't believe how long since I've written on here. Therapy appointments, a new Facebook addiction, and the holiday season have kept me from updating this page.

I have been concentrating on John's progress and the success's we have had since beginning early intervention. ( see 2 posts below for John's progress under "Neurofeedback Testimonial" ) Today, I want to take the time to talk about the struggles we have in raising a child with Autism. Since beginning early intervention, we have had extreme highs and dramatic lows.

A few days ago John had 3 meltdowns in the afternoon. These are not temper tantrums, but emotional meltdowns. Many times with autistic children, if anything is slightly 'off', if they feel sick, or they are having trouble figuring out their emotional state, they have these meltdowns.

For John, it began at naptime the other day. It's the kind of meltdown where the tears won't stop, you can't console the child, he can get hysterical, the cries turn to screams, and there is no apparent reason why he is upset. He appears uncomfortable, constantly moving and wriggling. Holding him is almost impossible because he doesn't want to be comforted. Talking to him makes the screams get louder. Rocking him makes him irritable. Time only makes the rage worse. As a parent, you go through a wide range of emotions during the meltdown. It starts with compassion and a sense of wanting to calm him down. Frustration creeps in as the meltdown continues. As his anger builds and you try everything to calm him down, your anger builds, as you try to remind yourself that getting upset is not going to help this situation. At some point, I begin to wonder what kind of impact episodes like this has on Katie, who is laying in her bed, one bedroom away, trying to take her nap. The next emotion you feel is failure and somtimes you begin crying with him, wondering why he has to be this way.

A few days ago, the first meltdown ended 40 minutes later when he became so tired and just fell asleep. He slept for an hour, while I re-charged for round two. The second he woke up, he picked up from where he left off. This time I couldn't stick with it. I called my mom, frustrated and felt like I just didn't know what to do. I had him on the lounge chair with a blanket, with his shirt off. He ripped it off at some point and wouldn't let me put another one on. I think restraining him would have been the only way to get the shirt on, but I had no energy for that battle and decided that if he wanted his shirt off, he knew better than me on this one. He wanted to bury his head in my shoulder and cry. He kept sobbing and wanted to pinch me under the armpits. His hand kept making its way into my shirt and I kept taking it out, which infuriated him, but I wasn't going to let him hurt me. I kept thinking to myself that this kid is only 3 years old and I'm the adult. My mom stopped by and when the door opened, he stopped crying and just looked at her. She walked in and said one word and the crying continued. She offered to hold him and he screamed "mama" and wouldn't let go of me. After another 15 minutes, he fell asleep on lap while my mom and I were talking. She left and I let him sleep on me for a half an hour and then I rolled him onto the couch. He stayed there for 2 hours. He never sleeps that long in the daytime, but he wore himself out.

When he woke up, he wasn't very happy and cried a little bit more. This time I had reinforcement --- Bill had come home from work. He responds better to Bill at times --- I think John gives me the worst of it. He wouldn't eat dinner, but we had to go out. Putting him in the car and eventually stopping at McDonalds changed his mood and he slept well that night.

Episodes like this are becoming a lot less frequent. In fact, we haven't had one of these in a very long time. But, it reminds me of where we came from. As a baby and up until last year, John had these episodes almost every day at 3 or 4 o'clock. I never knew what was wrong. I blamed milk, gas, his stomach, maybe he was sick, etc., but sometimes I don't even think these kids know what is wrong. It reminds me of where we've been and although we've made tons of progress, it also reminds me of what we are dealing with. Prayer, tears, friends, family, Bill's support, and my mother are getting me through this. Now, my prayer is strength to deal with the third child that is on it's way....

Understanding Development

I think one of the most important things parents of developmentally delayed kids need to remember is that the brain, along with the child, still needs to go through each stage of development. A child will not "skip" a stage through early childhood development as new skills emerge. The child, as well as the brain, needs to learn through the "normal" phases of development, so as your child grows in his development, you'll see new behaviors emerge that he/she may have never shown. This isn't a regression and yet, that may be how it feels. It is something you should rejoice in because he/she has hit a new developmental milestone. I will stress that it oftentimes doesn't feel that way, and does make life a bit harder, but there are certain behaviors that are normal in early childhood development.

I have recently discovered what a "terrible two" really is. John may have just turned 3, but the terrible two's are here in full force. I may have thought they were here earlier, but they were only a glimpse of what was to come! These new tantrums include protesting when Bill or I do not oblige in the wants and needs that John communicates to us. These are different than the days of transitional tantrums or the even older days of inconsolable crying. These are tantrums that are a direct result of John not getting his way. They include yelling, running, throwing, kicking, and pulling hair. Discipline ends the tantrums. Discipline makes him mad, but discipline works with these tantrums.

As I said before, we as parents should rejoice in the fact that this normal developmental phase is here. Instead of pulling our own hair out, we should jump up and down that are child is developing. My prayer is that the phase doesn't last long and that God gives me the strength to keep my cool because sometimes I would like to run around the house, scream, throw myself on the floor, pull someone's hair, or even "ring their neck". There are times when I feel like I can't take it anymore, but the day ends and the next day begins. God won't give us what we can't handle. Our reaction to what we are given is what will make us strong or weak in our handling. But, we can handle it. But, we may have to constantly remind ourselves that we CAN handle it.

John's New Results

John was assessed on Sept. 8, 2008 for entry into the START program. I recently received his results. At the time of the assessment, John was 34 months old. There have been 3 assessments where I can compare his progress. You'll see the May 2008 scores, which were the Regional Center's. Second, you will see his Casa Colina July 2008 update scores. Finally, you'll see his latest Sept. 2008 scores.

---------- May (30 mths ) / July (32 mths ) / Sept. (34 months)
Gross Motor --- 26 months / 26 months / 16 months (??)
Fine Motor --- 21 months / 23 months / 31 months
Cognitive ---- 21 months / 24 months / 28 months
Language Receptive ---- 6 months / 17 months / 33 months
Language Expressive ---- 9 months / 17 months / 31 months
Socialization ---- 10-17 months / 10-17 months / 29 months
Self Help ---- 23 months / 23 months / 24 months

Other than Gross Motor, John improved since July and dramatically since May.

During the time from June-Sept., he attended Early Start Preschool at Casa Colina, had Speech Therapy two times a week, 5 hours a week of in-home, and 40 sessions of Neurofeedback. He began OT/SI the first week of September.

It is worth noting here: Neurofeedback claims training can make a child with autism attentive, calm, and sociable. We have seen certain behaviors disappear and have watched John become calm. John is a different person today than he was 6 months ago when all of this started. It is hard to say what specifically helped John because we've been doing so much. However, the Neurofeedback seems to show us some patterns that are worth looking into. First, when we changed his protocals (the location of the EEG monitor, training a specific part of the brain), he began to have accidents in the seat and aggressive behavior seemed to manifest. We removed those protocals and went back to the old ones and there were no more accidents in the seat during the sessions and his aggressive behvaior seemed to go away.
Secondly, for the last 4 weeks, John has not attended Neurofeedback (he went 3 times over the last 4 weeks, as opposed to 5 days a week that we were doing before)--- first, due a family vacation and then, due to a death in the family. Over the last week-to-week-and-a-half, Bill and I have noticed that typical Autistic behavior (and some sensory issues) that had seemed to disappear has returned.

Things like:
Biting & chewing on shirt
Biting own skin
Chewing on objects
Frustration level is awful
Cries inconsolable again
Angry - bangs hands on table or objects when upset
Has been hard to take out in public - clingy, whiney, cranky, tantrums
Cries when I leave him in class

Tomorrow, John will begin a normal schedule of Neurofeedback training of 5 days a week. I'll report back to see if these disappear once we resume it. The goal of Neurofeedback is to train the brain to self regulate. After a repeated number of sessions, the brain will "remember" its training and be able to self regulate on its own.

He also has developed a cold. I notice that everything seems to be magnified when he's sick.

This week is a big week. Tomorrow, we go back to Neurofeedback. Tuesday, we see Dr. Baumen, an autistic specialist. Wednesday is John's assessment with the public school system and Friday is Halloween!

"Out of Sorts" days

John has had a day where he has just been "out of sorts" since he woke up.

Days like this include clingy behavior, accompanied by crankiness, and "oh no" quite a few times. Everything seems to set him off. He doesn't listen well and doesn't seem interested in anything. He'll ask for one thing or another and then be upset once it's given to him. He doesn't eat well and sleep doesn't seem to change his mood. "Good" moments are less frequent throughout days like this, but are present in between the whines and cries. Most of the day, he's hanging on my back, if I try to sit on the floor with him, climbing on my lap if I'm sitting in a chair, or putting his hands under my armpits and pinching, which I move and it makes him mad and irritated.

On days like this, he cries, not like a tantrum, but like he's sick or just doesn't feel well. It's days like this when you find reasons to explain away the behavior. You think that he "might be coming down with something" or "his head might hurt". You might tell someone that he seems "tired today" or simply that "he isn't happy". You find yourself thinking he needs another nap and try to lay down with him, but he cries inconsolable. Sometimes it's an angry cry, then it's a sad cry, and then it stops. You hold your breath and don't move, thinking that he might actually be falling asleep. 30 seconds go by and the crying comes back. You try to stay calm and sing songs. You tell him it's ok and continually say "shh". Then you just hold him in silence, hoping the crying stops. Sometimes, it's too much and you call in for reinforcement so you can get away from it.

Whatever the reason, these days are hard to get through. It reminds me of how it used to be, and how it still is. On days like this, it feels like a set back and you question the progress so far. When the schedule isn't busy and we aren't going from therapy session to therapy session --- when we have a full day of "doing nothing", or running errands, or hanging out, these days seem to creep in. It's hard to stay calm. It's hard to find understanding. I feel tired and need to get away. So, Daddy takes both kids outside. I'm glad I'm not alone. The support of those around you is so important when you hit days like today. It's days like this that if someone tried to tell me that nothing is wrong with John, I might throw something.