Donuts!

This is from when Adam was 3. He is visually stimming with this screensaver.

We made it through a movie!!!!..........................almost.

Adam likes movies. He likes movies a lot. When he likes a movie a lot, he will watch it obsessively. Adam does not like movie theaters. He does not like them, Sam-I-Am.

But, he really likes Toy Story, and he's been on a Toy Story 2 kick at home. So I thought Toy Story 3 might be enough of a familiar scene to make an attempt at the theater. Jason had rain checks from trying to take Josiah & Dakota to the first showing of Sorcerer's Apprentice (reels were spliced poorly at the end), so I took Josiah & Adam. We got there right when the show was supposed to start, and were stuck behind at least 12 people. And then the teen in front of us had the rest of his family join him in line. One of the workers came out and told people they could use a credit/debit/gift card at the kiosk in the lobby. I took a chance on the rain check cards and failed. So we left, because the line was going to be another 30 minutes long once we got back to it, which would mean missing the first hour of the movie.

We came back for the next showing. Standing in a (much shorter) line this time, Adam started early with telling me he was scared. And that he wanted popcorn. But he was scared. We got into the theater and he started to really freak out. "I SCARED!!!" And then he settled down. He actually sat down in the chair and waited through the previews. Waited impatiently. He kept trying to point out that he was there to see Toy Story 3. Previews are apparently not part of his movie-going schema. Then the Pixar screen came on and he visibly relaxed into his chair. And then they ran a short. "I see Toy Story threeeeeeeeeeeeee." Which translates into, 'Why am I not watching it right now?'

He did pretty well. We played musical chairs... about every 30 seconds. Sometimes it felt like less. It was either trade chairs with him, or let him disrupt the movie for everyone in front of us. He did a headstand between the aisle seat and the (thankfully, empty) seat in front of us. He took off his shoes. He rolled his Transformer car down the aisle. (Sorry elderly gentleman across the aisle.) He loudly announced his need to use the bathroom. He loudly announced that he was DONE. He lasted about an hour and 10 minutes in the theater. It was not a calm and relaxing hour, but he was processing it fairly well.

I can't keep him in the theater once he's done and yelling. So we went into the hallway and I watched the movie through the window in the door. We could have left, but I wanted Josiah to get to finish watching the movie. And I wanted to watch it, too. So Adam threw himself on the ground a little. Kicked off his shoes again. Walked on the stacked booster chairs. Asked to be held up. Kicked to be put down. Asked to be held up. Wanted to go back in the theater. Did NOT want to be in there. Wanted to go back in. Ate his apple, between bites of which he cried at me that he was hungry. That's not very convincing, Adam. Wanted to go back in, immediately wanted to leave. I called it quits on the back and forth and we finished the time in the hallway.

So, in conclusion, I've determined some rules for movie-going with Adam:
1) Pick something familiar. Don't spring something new. Go for a topic of obsession (Toy Story, Cars, Nemo, ocean) or you will never have his attention.

2) Don't go to a big theater. The theater we go to is the size of the older theaters that are used for the dollar shows - except this one has current movies (not for a dollar). My idea on this is that the darkness in a smaller room will adjust to his eyes more quickly than a larger room. Plus, smaller spaces are more limiting, which can be comforting.

3) SNACKS.

4) Something short, no more than an hour if possible.

5a) Don't bring extra people.
5b) If you bring extra small people, bring an extra big person.
5c) " " ", have someone on-call to pick him up so you and extra small person can finish the movie.

6) Be patient

and finally...
7) Bring a sense of humor for the unknowing who glare at a child for making some noise in a kid's movie.

A Small Step

One of Adam's sensory issues is sensitivity in his mouth. Because of this, I can't brush his teeth without a fight. A fight that I'm usually (barely) winning only by brute force. When I brush Adam's teeth, we look like professional wrestlers... or maybe just a giant pretzel. It' s not a fun experience for either of us. A dentist suggested getting an electric toothbrush, so I did. Adam calls it 'Mommy's Scary Toothbrush.' He is more than happy to hold it and brush Mommy's teeth, but that thing is Scary Toothbrush and it gets less clearance to his mouth than the regular toothbrush does. The result of all this is Adam doesn't get his teeth brushed very often. I don't readily admit to it often, but I don't feel too badly either.

However, I am always trying to find a way to make it easier. I think we've had a breakthrough recently!

We have some of those floss picks, so I decided if I can't get the teeth themselves clean, I can at least try to clean between the teeth. When I cut Adam's nails, I tell him we're clicking them. He enjoys calling out 'click!' every time I click the nail clippers. I decided to try this method with the floss. I showed Adam the floss pick and told him I was going to click his teeth. I expected a small struggle, but he giggled and opened his mouth. I clicked and made a big production of being grossed out by the plaque that was on the floss. He thought it was great! He wanted to see the 'yuck' after every click.

After we finished with the floss, I got out a finger toothbrush that I've had since his older brother was a baby. I showed Adam how it would go on my finger and rubbed it on his hand so he could get an idea of how soft it was. I offered him to put his finger in it, but he didn't like the idea. He was fine with me using it for him. He watched me put some of the kid toothpaste (Crest Kids) on the brush and then he flipped out. It seems that the flavor of the toothpaste has been part of our dental battles. I'm not fully convinced that toothpaste is truly a necessity, so I had no problem washing the toothpaste off. Once the toothpaste was out of the way, he was mor than cooperative in opening his mouth to brush! He giggled through the brushing - a softer brush doesn't change his mouth's sensitivity - but he wasn't fighting me. He was quickly approaching sensory saturation at the end but was willing to let me brush the last surface area before a treat of rubbing his tongue with the brush.

I think we have a ritual that works. Click the teeth and show the yuck. Finger toothbrush with no paste. Tickle the tongue now and then. Now to figure out a way to drag him off the electronics so we can be more regular with brushing, without meltdowns on the way. It won't matter how cooperative he can be to brush teeth if he's having a meltdown on the way there.

Test Results and Interpretation

In short form, Adam has been diagnosed with Autism. Sarah said he was nearly classified as Asperger's Syndrome, but his low Adaptive Behavior score prevented that. She said she considers him to be fairly high-functioning at this time. The state of Oklahoma does not treat 'autism,' but it will treat the behaviors that earned the Distruptive Behavior diagnosis, which is why he also has this diagnosis. It is not uncommon for kids to have both diagnoses together, as they would not be likely to be evaluated for autism if the disruptive behaviors were not also present.

I know to some people, an autism diagnosis is kind of scary. Some people have the opinion that autism is linked to vaccinations. Whether it is or whether it isn't, I do not believe anything caused Adam to be this way. He is just Adam. He will need different approaches than our other kids will, and it might be a longer journey for him. But in the end, he is still just Adam.

Here are the bare bones of Adam's psychological evaluation:

Procedures Employed:
Stanford Binet Intelligence Scales - Fifth Edition, Abbreviated Battery (SBS)
The Vineland Adaptive Bahavior Scales (VABS)
The Autism Diagnostic Observation Schedule (ADOS)
Autism Spectrum Rating Scales - Parent Form (ASRS)
The Gilliam Asperger's Disorder Scale (GADS)
Short Sensory Profile
Parent Interview

Test Results and Interpretation:

The Stanford-Binet Intelligence Scale: Fifth Edition

The Stanford-Binet Intelligence Scale: Fifth Edition, abbreviated battery was administered to Adam in order to determine his current level of intellectual funcitoning. Adam obtained an estimated Full Scale IQ score of 79, which falls in the Borderline Impaired Range. Adam obtained an estimated Nonverbal IQ scaled score of 8, which falls in the Love Average Range, and an estimated Verbal IQ scaled score of 5, which falls in the Extremely Low Range. This indicates that Adam performs better on tasks that limit the use of verbally-presented material.

What I was told is that the IQ score on its own doesn't give a full picture. It's more of an averaging out of the Verbal and Non-verbal portions. For these areas, 10 is the median. Adam clearly funtions better with non-verbal information than he does with verbal information. As an example, he is likely to be the one who draws more information from a diagram than he will from a wordy, detailed instruction. He is functioning at a higher level than 79, but this is the average from the two sub-tests. The IQ score in and of itself is not a concern unless it is at 70 or below. At the time of testing, Sarah stated that we would want to have a new IQ test administered in about a year, because a lot of times, an IQ test for a 4 year old mostly indicates how cooperative they were feeling that day.

Vineland Adaptive Behavior Scales
The Vineland Adaptive Behavior Scales were completed by (mom) in order to determine Adam's level of adaptive behavior functioning. Adam obtained an Adaptive Behavior Composite score of 78m which falls in the Moderately Low Range. He obtained the following domain standard scores:

Domain Standard Score (95% Confidence interval) Adaptive Level
Communication 93 Adequate
Daily Living Skills 81 Moderately Low
Socialization 72 Moderately Low
Motor Skills 81 Moderately Low

On specific domains, Adam's scores ranged from the High to Low range. Adam's written communication score was in the High range. His Communication domain and Fine Motor Skills sub-domain scores were in the Adequate range. His Receptive communication and Play and Leisure Time sub-domain scores were in the Low range; all other scores were in the Moderately Low range. his scores on several sub-domains and domains ranked as areas of strength for Adam, including the Written sub-domain, Communication domain, Coping Skills sub-domain, and Fine Motor Skills sub-domain. his scores on the Receptive sub-domain of Communication, the Play and Leisure Time sub-domain, and the Gross Motor Skills sub-domain ranked as areas of weakness for Adam.

The Autism Diagnostic Observation Schedule (ADOS)
The Autism Diagnostic Observation Schedule (ADOS), Module 2, is a semi-structured observation instrument used to assess social and communicative behaviors in children with autism.

In the area of communication, Adam exhibited delay. When speaking, Adam used little variation and intonation and tended to speak very quickly. He uses echolalia at times, and tended to repeat "What's that!" over and over, but it sounded like a statment rather than a question. He could not maintain conversations and did not use gestures.

In the area of reciprocal social interactions, Adam continued to show a delay in skills. He rarely used eye contact and showed few facial expressions. When he did show his emotions, it was only when he was very upset and angry. He did not seem to enjoy shared interactions, preferring to play with objects his way or alone. Adam rarely initiated joint activities, and when he did it was only to roll a ball back and forth. He also rarely responded to his name, even when he was touched on the arm while calling his name.

Adam exhibited some restriction in his range of play. Adam showed little imaginative play, simply staging the characters on the furniture but not playing with them. When the play was changed by the examiner (i.e. she changed what the action figures were dong) he continued his own play without acknowleding her interaction at all.

Autism Spectrum Rating Scales - Parent Form (ASRS)
The ASRS was designed to effectively identify symptoms, behaviors, and associated features of Autism Spectrum Disorders in children and adolescents aged 2 to 5. (Mom) completed the questionnaire and endorsed social/communication issues, peer and adult socialization, social/emotional reciprocity, and attention/self-regulation issues for Adam. She reported t hat Adam has problems talking to other children and appears disorganized. She stated he rarely uses imaginative play and he plays next to, but not with, other children.

The Gilliam Asperger's Disorder Scale (GADS)
The GADS is a masure designed to assess for the core characteristics of Asperger's disorder. Scales on this measure include an overall scale as well as Social Interaction, Restricted Patterns of Behavior, Cognitive Patterns, and Pragmatic Skills subscales. Social Interaction assesses social interaction, communication, and expression of emotions and Restricted Patterns of Behavior asseses narrowly focused, idiosyncratic patterns of behavior. Cognitive Patterns assesses speech, language, and cognitive skills and Pragmatic Skills assesses understanding and use of language in a social context. Higher scores on this measure are more indicative of Asperger's Disorder.

(Mom)'s responses resulted in an Asperger's Disorder Quotient standard score of 103, which suggests that the probability of Asperger's is high. Adam obtained clinically significant standard scores on all four of the subscales. Specifically his mother stated that Adam has difficulty cooperating in a group, seems unaware of social 'rules,' and he expresses anger inappropriately. She stated that Adam demonstrates eccentric behavior and is preoccupied with specific subjects. She stated that Adam has difficulty identifying when someone is teasing him and does not seem to understand why someone might not like him.

Actually, I don't think the concept of not being liked has ever occurred to him. I've never personally witnessed anyone not liking Adam. It just hasn't come up as anything to understand or not understand.

Short Sensory Profile (SSP)
(Mom) completed the SSP questionnaire, a measure of sensory sensitivity that relates how well children process sensory information in everyday situations. (Mom)'s responses i ndicate that Adam is experiencing considerable differences in the way that he processes sensory information. His overall scores was in the Definite Difference range. His scores on tactile sensitivity, movement sensitivity, seeking sensation are in the definite difference range as well. He seems to become distressed during grooming, is afraid of heights or falling, and makes strange noises often.

If you haven't heard me talk about Adam's sensory issues before, here's the rundown: haircuts (itchy), hair clippers (scary), brushing teeth (hurts), rain or similar senstions (e.g. water guns, water sprinklers), getting picky about food (not for textures, just phases of food preferences), always jumping-running-climbing but can't unwind from it.

CONCLUSIONS:
Adam's mother reports that Adam has a few areas of difficulty, including social skills deficits, restricted interests, and disruptive behaviors. His Cognitive abilities fall within the Borderline range. Adam's overall Adaptive Behavior Composite falls into the Moderately Low range and falls where it is expected to, given his intellectual functioning.

Adam displays some behaviors indicative of an autism spectrum disorder, including a deficit in skills required to socialize with same-age peers, including conversation skills and emotional reciprocity. He also displays problems with pretending and playing with peers.

Information gathered from the Autism Disgnostic Observation Schedule, the Autism Spectrum Rating Scale and the Gilliam Asperger's Disorder Scale also suggest that Adam may be experiencing symptoms indicative of an Autism Spectrum Disorder. Given Adam's impaired social interaction, inability to participate in mutual emotional or social give and take, and his preoccupation with certain topics (i.e., transformers, ocean life) and his delay in the use of language, it appears a diagnosis of Autism Disorder is warranted. Adam is exhibiting tantrum and disruptive symptoms as well, screaming, crying, and banging his head when he becomes upset. These behaviors are above what would be expected of a child dealing with Autism and warrant an additional diagnosis of Disruptive Behavior Disorder - Not Otherwise Specified.

DIAGNOSTIC IMPRESSIONS:
299.00 Autistic Disorder
312.9 Disruptive Behavior Disorder - Not Otherwise Specified

Recommendations: (summarized)

1. In-school educational interventions. Adam is eligible for an IEP (individualized educational plan).
   Adam will be homeschooling with his older brother, but should we ever decide to have him in public school, we will arrange to set up an IEP.
   
   
2. Speech/language therapy
   Check! We are going 2x a week and I am weighing the decision of whether to obtain extra therapy days through the school district.
   
   
3. Occupational evaluation
   Check! Evaluation done on June 18, now awaiting results.
   
   
4. Therapeutic services to address disruptive behaviors. Parent-Child Interaction Therapy (PCIT) has been highly recommended.
   I am very much considering this. I believe it will be helpful not only for Adam and our other kids, but for application in my pre-k class as well.
   
   
5. Adam qualifies for SSI to help cover services that SoonerCare does not.
   I hate making phone calls, but I'll do it.
   
   
6. Children and adolescents with attentional, emotional, behavioral, and/or learning problems often have the most trouble in situations where expectations and consequences are unclear and in situations that are unstructured, boring, repetitive, familiar, and/or extremely long in duration. Adam is likely to do best in a highly structured environment with clear and consistent rules and consequences for his behavior; assignments and tasks that can be easily understood, are of interest, and are consistent with his ability level. Limiting external distractions and making reasonable accommodations for his unique style of learning, behaving, and interacting will be helpful s well. In particular, Adam may need to use a visual schedule to help him adhere to a routine and to know what to expect during that routine. Chore charts with pictures of Adam completing the chores will help him stay on track and understand what to do. In addition, advanced warnings of change as much as is possible will help diminish some of Adam's difficulty with these changes. Also, w hen giving Adam directions make sure you have his attention first. State the direction as simply as possible and as short as possible. Use visual clues to assist his verbal comprehension such as pointing or demonstrating how to complete the task or activity. Social stories are also very helpful for chilren with developmental disorders. Social stories are simple stories that describe social events and situations that are difficult for a child with an Autism Spectrum Diagnosis to understand.
   
   
7. Opportunities to take on more responsibility in regards to daily living skills and socialization
   
   
8. Positive conseqences for appropriate behavior and negative consequences for inappropriate behavior, stated clearly and in a concise manner.
   
   
9. Reinforcers or incentives such as tangible items, praise, or time with preferred people can help increase Adam's compliance at home and in the community.

Red Lobster

Adam had his psych eval today. He did well despite missing lunch and thankfully catching a car nap on the way there. The evaluator said she doesn't know for sure yet if he is ASD, but from her observations she is leaning that way.

Anyway, I had promised a cheeseburger to Adam when we left the house, and I made good. We went to McDonald's and had some cheeseburgers and shared Hi-C. He insisted on staying to play so I went ahead and caved in. I mean, at home it's gotten to the point where he tries to grab the computer mouse from me, he's so intent on playing a game. Climbing in the play area would be good for him!

There were a couple of little boys, a few years younger than him. They were throwing their Happy Meal toys up the slides and enjoying making a terrible racket. Adam watched them the entire time he was eating his cheeseburger. When he finished, he went and stood just a foot or so behind them, watching them throw the toys up. He never tried to jump in their game or ask for a turn, but he was showing interest in other kids. Kids he didn't know, even. After a little while, the boys ran around to the platforms at the other end. I guess Adam didn't see them go; after a few seconds he peered up one of the slides and yelled "You down there?" He actually initiated conversation with KIDS! Last summer he had gotten to where he'd go up and tell a random adult something that he was doing, but he generally ignores other kids, even if he knows them. I was so stunned I wanted to cry!

And an amusing story: When we were leaving the psych office, Adam was telling me again that he was hungry. I asked what he wanted to eat. He told me Red Lobster! There is a Red Lobster just across the street from the office, so I figure he saw the sign (he does read) when we got their earlier. But we don't watch tv so I'm not sure where he made the association between Red Lobster and food! Then after we had our cheeseburgers and ran an errand, we were going to go by my mom's house. I asked Adam where we were going, and he told me Red Lobster. Seriously, I'd love to jump inside his head sometime..

Speech evaluation

Adam had his speech evaluation today. He went with the therapist, Neisha, easily. Nisha went over the assessment with me. As far as articulation, she only noticed a difficulty with /l/, but at this point, it is not a concern. What she was concerned with, however, was his language: receptive language in particular. There were a large number of items that he missed where Neisha did not think he was understanding what she wanted. He didn't seem to understand the concept of 'all' and doesn't respond to the W questions (who, what, where, when, why, hoW) well. He had a very difficult time following two-step directions. Neisha also seemed concerned that she was only hearing 2-3 word sentences from Adam.

It was an eye opener for me. I had always thought that Adam's language difficulties were expressive, that he was like me and didn't always know how to put into words what he's thinking. but now, I'm seeing that maybe it is actually his receptive language that is delayed, and that his expressive language is being affected as a result.

Niesha recommended coming twice a week for therapy instead of the once a weekthat was already scheduled. She also encouraged having his vision assessed. She wasn't sure if he was avoiding eye contact or couldn't see well. SoonerCare covers it, so I guess we might as well.

As we ended the visit, I brought up Adam's repetitive speech. An example I like to refer to is a 'conversation' Adam and I had a few months ago:
"Mom, you like chicken?"
"Yes."
"Mom, you like chicken?"
"Yeah, I like chicken."
"Mom, you like chicken?"
"Yeah."
"Mom, you like chicken?"
"Yes, Adam."
"Ok. You likes them, Mommy?"

Neisha says this is perseveration. It can be a commonly seen behavior in autism.

All in all, the visit went well. I just wish someone would have mentioned to me that Adam was not actually wearing any pants when we went to the appointment! Fortunately, I don't think anyone noticed because they were solid colored boxer briefs.

The journey begins, but not at the beginning.

It's 2am. I've been mourning tonight. It's hard when you are on your way to bed, and you discover that there is an unwelcome substance in the bathtub, again, that should have been in the toilet hours earlier, when the 4 year old took a bath. It's hard when you remember that every. single. bath Adam has taken lately has ended this way. It's hard. I started crying.

I was ok when Adam spent two weeks in the NICU for premature development after he was born - at 38 weeks.

No one knew why he was underdeveloped. It seems that the rest of the family, and who knows how many family friends, were worried for his life. I never was scared. We knew what the problem was, the staff knew how to handle it, life moved on and it wasn't long before he was home with us.

I was ok when we noticed he had far more bruises than could ever be considered normal for a two-year-old boy.

I was ok when we found out he had a severely low platelet count. Concerned, yes, especially when two different medications were not improving matters. Concerned, yes, when the overseeing doctor ordered a bone marrow biopsy, to rule out leukemia as a pre-caution before trying a third medication. It scared the something out of me watching him drop out of consciousness from the sedation. But I was ok.

This is a little harder to handle. In the last two years, I've seen the equivalent of 6 months of growth. Adam will be 5 this fall, but he fits in a little better with a group of 2 and 3 year old kids than he does in my pre-k classroom. Adam can read, Adam can write. Adam has only been speaking full sentences for just over a year. If this was everything, life would be cake.

Everything for Adam is an extreme. He is deliriously happy or he is The Hulk. He is STRONG. He jumps, he climbs, he swings, he operates the dvd player one his own after being told for the 3,516,813,516,846,138,464th time that he is not permitted to handle the dvds. He will watch his favorite movies incessantly - I think they may be new to him every time. Don't even think about trying to get him to use an unfamiliar toilet; if you do get lucky, don't even think about getting him to flush it. It's scary. Haircuts are scary and they itch. Brushing teeth is scary and hurts. Movie theatres are scary. He hates to poop on the toilet and so I have to rinse poop out of his underwear on a near-daily basis - or maybe I'll find it in the bathtub. Again. He would love for me to allow him to wear diapers again - he was caught a few months ago trying to figure out how to put one on. Adam has a low patience level and his waiting tolerance is about 15 minutes. He has gone from having an amazingly healthy appetite with a wide range of tastes, to refusing his favorite foods. He wanted popcorn for dinner. When Adam wants to say something that is important to him, he won't stop saying it. You'll hear the same question repeated 4 or more times, regardless of whether you have answered it or not. He has a hard time going to bed when his brothers do because it hypes him up, and then he annoys his brothers by jumping on them and pestering them with every annoying move he can. Yes, he's a boy. He acts like a boy. Everything about Adam screams boy. It' s just he's not from the same planet as the rest of us. He wears the family out, but I wish I had more time to spend with him. Just for him. I lay in bed for a while a few hours ago and just wished I could hold him close and let him know how loved and safe he is.

It's hard.

We have some assessments coming up that I am hoping will bring some answers, or at least a step forward on the yellow brick road. I have suspicions, but I don't want to get caught up in those. Next week I have a meeting with a psychologist. Adam is not invited per office policy, as they do not want to hurt feelings of the child being discussed. His dad and I feel he would be oblivious to the content of the conversation, but there will be a chance for them to observe Adam another time. I just wish we could get straight to business - here's my kid, here's why I'm concerned, can we get started now?

We also have a hearing test. Adam had tons of ear infections as an older infant and has had balance difficulties, and likely allergies as well. He had ear tubes placed at 14 months and everything improved drastically. He has ear infections far less frequently now. With his lack of speaking until a year ago, we want to make sure his hearing is sufficient. Even with the ENT visits years ago, he never had a hearing test. I think it's time to check it out.

Our pediatrician also encouraged a speech evaluation, so we'll be having that set up. And as if there wasn't enough on Adam's plate, he's got his first dentist appointment in the next few weeks as well. Strangers poking in his mouth, sounds like a recipe for disaster! He does appear to have a cavity, which means a good chance we'll also be sent the direction of the hospital for a little sedation. Adam comes out of sedation raging.

I guess I need a little excitement in my life, right?

I think I can sleep, now.