Developmental testing, take 2

The following is the exam, assessment, and plan from Lively's testing a week and a half ago. It took me about a week to bring myself to read it, and I've been thinking about it constantly since. My annotations are in bold.

Lively presents for a neurodevelopmental assessment:

Physical Examination:

GEN: He was awake, alert. He was somewhat difficult to engage. He demonstrated some spontaneously produced speech, reasonable eye contact but notably better with parents. He was somewhat uncooperative with developmental testing. Lively was obviously uncomfortable during the testing, which occurred in a small, windowless, disorganized room with Lively, Pete and me, the attending physician, a resident, and a medical student. Lively was asked to perform in front of 3 people he doesn't know, at very close quarters. The doctor insisted on having him sit in a wooden chair at a table. Lively doesn't sit in chairs other than his high chair, which is comfy, and has a back, arms, and straps to hold him in securely. Pete and I suggested that she test him on the floor, where he would be more in his element, and after he basically refused to do anything for 15 minutes, she consented to Lively sitting in his stroller for testing (also comfy, with back, sides, straps). Yes, he was uncooperative. I felt fairly uncooperative myself.

NEUROBEHAVIORAL STATUS EXAM: This neurobehavioral status exam includes clinical observations and assessment of motor function, thinking, reasoning, and judgment including knowledge, attention, language, memory, problem solving, and visual spatial abilities. Observations as follows:
Activity level: Normal activity

Attention Span: Variable but maintained limited attention with developmental testing.

Gross Motor: Able to walk without assistance with toddler wide-based gait; able to walk up stairs with one-hand assistance; crawls up stairs on own

Fine Motor: Has pincer grasp with cereal; fisted pencil grasp with spontaneous writing. Lively, for the first and only time, picked up a Cheerio with his thumb and pointer fingers, which is the pincer grasp. I have not seen him do it before or since. He'll get there, but now, he rakes the cereal into his hand palms it, struggles to get it to his mouth, and drops it half the time. However, because he did this once, his fine motor skills were judged to be "his best," at 17 months developmentally. This is not the case. And this result is one of many indications, to me, that this particular testing is a load of crap.

Speech and Language: + vowel and consonant sounds, "dada," and other babbling

Mood/Affect: Engaged at times, other times fussy.

Play: Repetitive movements with the following -- moving blocks back and forth, spinning board in circles, flipping puzzle pieces in fingers, banging toys, tapping on the table and wall. Does show symbolic play with hair brush (tried to brush his own hair). Observed his focusing on the lights and finger flicking without purpose. At times, offers toy to share and symbolic play but not consistent behaviors. Subjectively had to work hard to get him to engage with play. These are some of the issues that have had me worried for awhile. Lively has numerous repetitive motions. He used to do a lot of flapping and "stimming", but as he's gotten older, we see this less. He does like to spin toys and to bang on things, but with his motor delays, it has been all he can really do. He will, for example, spin a part of a toy, and seem to focus intently on it, but if I call his name or show him something else, he changes focus easily. He does lots of finger flicking, but only with his left hand, which is the side affected by his stroke. He's always postured with that hand, he's definitely weaker on the left, and we've always thought that it probably feels different to him. As he gains motor abilities, some of his disorganized and repetitive behaviors are shifting. For example, he used to sort of bang around a bucket full of blocks, but now he's able to dump out the blocks and put them back in, so he doesn't really bang them anymore. As far as symbolic play, the doctor gave him a doll and a bottle and wanted him to "feed the baby". Lively has a g-tube, and isn't able to take liquids by mouth at all. He hasn't had a bottle since he was 9 months old, and I know there's no way he would remember what to do with one. If she'd given him a freaking toy phone, he would have held it up to his ear and said, "Dada?"

Cognition: Appeared to be delayed based on his verbal capacities. Object permanence -- able to find ring; able to find car with multiple attempts. This means that he was able to find a toy that was hidden under a blanket. It's a developmental milestone when a child knows that a toy still exists even though he can't see it (object permanence).

Relatedness: Demonstrates some eye contact but notably better with parents. He does check in with parents intermittently. Parents report he is referencing his parents more at home. Referencing is when a child is playing, and he stops and checks in visually with the caretaker, like, look at me! Did you see that?! For a long time Lively didn't do this, but we're definitely seeing it more and more. The other day, he pulled Annie's hair, and got "in trouble" for it (which means we said no, sternly, and picked him up and sat him down in the corner). This is actually mostly for Annie's benefit, to try to show her that it's not OK to hurt people, and to show her that we will not let Lively get away with hurting her. When he came out of time out, he went right back to Annie, reached for her hair, stopped, turned around and looked at Pete, and smiled with an expression that said "Look what I almost did! Ha!" Or other times, he will roll a ball back and forth with Pete, and he'll look at me proudly, as if to say "Did you see that Mom?"

DEVELOPMENTAL ASSESSMENT: Lively was assessed with a Mullen Scales of Early Learning. The Mullen Scales of Early Learning consist of a gross motor skill together with four cognitive skills: Visual reception, fine motor, receptive language, and expressive language. The gross motor skill measures central motor control and ability in supine, prone, sitting, and fully upright positions. The visual perception skill test of the child performance and processing individual patterns, and the primary ability areas covered in the scale are visual discrimination and visual memory. These abilities involve visual orientation, visual sequencing, and visual spatial awareness. The fine motor skill provides a measure of visual motor ability. It reflects the output side of visual organization. These items require visually directed planning. Primary ability areas covered in this scale are unilateral and bilateral manipulation and writing many enough. The receptive language scale measures the child's ability to process linguistic input. The primary ability areas covered in this scale are auditory comprehension and auditory memory. The expressive language scale measures child's ability to use language productively. The primary ability areas covered in this scale are speaking ability and language formation including ability to verbalize concepts.

Lively's scores were as follows:

Gross Motor age equivalent, 16 months; agreed
Visual reception, age equivalent, 14 months; no clue
Fine motor, age equivalent, 17 months; I'd say more like 14-15 months
Receptive language, age equivalent, 11 months; I think closer to 14 months
Expressive language, age equivalent, 10 months; maybe

Lively's age is 19 months. At the time of this test, he was 4 days short of 20 months.

In the domain of gross motor development, Lively could stand and walk up stairs with help.

In the domain of visual reception, Lively could turn cup right-side up, makes object association with brush, looks for car under two washcloths, and shows interest in book as hinge.

In the domain of fine motor development, Lively could bang in midline, take 4 blocks out and put block in, uses two hands together, show refined pincer grasp, turns pages one at a time, imitates crayon lines in any direction. He also showed repetitive turning of blocks, turning of puzzle in circles, and turning shape around in hands.

In the domain of receptive language, Lively could understand simple verbal input (bye-bye) and identifies objects.

In the domain of expressive language, Lively was able to show voluntary babbling, produce three consonant sounds, vocalize two-syllable sound (dada), plays gesture game (peek-a-boo), combines jargon, and said "cu" to approximate for cup.

Impression: Lively is a sweet and adorable 19-month-old little male who presents to the Developmental Clinic with concerns about speech, language, and behavioral development. I couldn't agree more with the sweet and adorable part.

On developmental assessment, Lively demonstrates some receptive and expressive language delays with additional notable deficits in the pragmatics of social communication, which includes deficits in how he uses eye contact to initiate and maintain social interactions with others. He demonstrated notable delays in his expressive language (expressive language skills at 10 months).

In addition, he demonstrated some atypical restrictive patterns of play: moving blocks back and forth, spinning the puzzle base, rolling puzzle piece around in fingers, finger flicking, and banging hands against table and wall. He demonstrated intermittent eye contact and inconsistent social referencing. There was little shared back-and-forth reciprocity with him. I forgot to mention -- she tried to have him do a puzzle. He absolutely doesn't have the fine motor skills yet to do a puzzle. The eye contact is actually much better than what she saw. I think he was just as pissed as I was.

These constellations of symptoms characterized by limited bidirectional social interaction (characterized by poor eye contact and limited use of nonverbal gestures and limited initiation of back-and-forth interactions), and restrictive range of interests suggest a diagnosis of pervasive developmental disorder, not otherwise specified (PDD-NOS). Lively demonstrates some notable strengths, including improved eye contact with parents and an ability to engage in some limited reciprocal activities with his caregivers. Lively is a sweet and responsive little boy who, with scaffolding and redirection, is able to engage in some bidirectional activities. He is verbal and demonstrates limited intentional spontaneously produced speech sounds. It is encouraging that he is demonstrating progress in two weeks since his last visit. He would benefit from early intervention. Perhaps, most importantly, he has loving, invested, caring, and committed parents who are very dedicated to him and who are very vigilant in helping Lively reach his developmental potential. We are happy to support them in that regard.

Our diagnoses are as follows:
1. Pervasive developmental disorder
2. Lack of expected development
3. Global developmental delay.

Medical decision making included the following.
1. Obtaining history from the parents.
2. Review and summary of previous records and evaluation.
3. Findings discussed with Dr. Joshi

Recommendations: Our recommendations are as follows: another interjection here. The doctor spent quite a bit of time with us discussing her recommendations. However, there's a lot here that she didn't mention to us. We don't have a return visit scheduled with her either to discuss further recommendations.

1. Because of Lively's atypical developmental picture, we are recommending a referral to Genetics to rule out a genetic contribution to his atypical developmental picture. She did not tell us this. We told her that Lively has already seen genetics, and the geneticists don't think he needs further evaluation from them. Lively has had some targeted testing, and everything was negative. For now, I'm satisfied that there is not an underlying genetic condition. Lively had a stroke, likely perinatal, which caused infantile spasms and a seizure disorder. He has experienced many complications of medical intervention that kept him either feeling terrible for 3 months due to medication side effects, or that landed him in the ICU on a ventilator (twice) with long term hospitalizations totaling 2 months. So perhaps it's expected for him to have a 5 or 6 month delay.

2. Because Lively has several developmental and learning needs, we are recommending an assessment through UMACC and parents have set up an appointment for early April. Long term needs will likely include the following developmental assessments:

-IQ and achievement testing.
-Speech and language assessment to look at receptive and expressive language and the pragmatics of social communication.
-Occupational therapy assessment to look at fine motor skills.
-Behavioral assessment with some measure of adaptive functioning such as using the Vineland Adaptive Behavior Scales.
-Play assessment and observation of interactions with other children.

3. If Lively does not meet criteria for inclusion in the ESI Program, we would recommend increasing developmental services to include speech therapy twice a week to address receptive and expressive language skills and the social pragmatics. We have been referred for speech therapy twice a week, and our intake is scheduled.

We recommend that Lively receive intense speech therapy to focus on the pragmatics of social communication. We feel that Lively's language needs are best provided by intensive speech therapy at the frequency of 2 times per week. We have given the family a prescription for private speech therapy services for 2 times per week.

Speech therapy can address, for example, having him make requests that involve both the use of eye contact and a combination of vocalizations, and/or gestures and signs. We also discussed encouraging all methods of communication.

4. We feel that Lively should continue occupational therapy to address his sensory symptoms and his fine motor delay through Early On and Milestones.

5. Lively could benefit from the addition of behavioral interventions to assist him with his capacity to engage in bidirectional social communication. I have no idea what this means, or where we get "behavioral interventions".

6. Lively should be enrolled in a full time program which addresses his neurological and developmental needs, and provides intensive services in a setting with a small student-teacher ratio. Lively is at risk for developmental regression if developmental services are not provides in the context of a year-round program. Whaaaaatttt? Um, this is news. Thank goodness I have access to his medical record. What kind of full-time program? Where? How do we get in? How much does it cost? Does insurance pay? This "full-time program" seems like a pretty big thing to forget to mention to the parents. I still don't know what we're going to do about this.

It will also be important that Lively receive services that are specific to children with PDD-NOS. Specifically, researchers recommend that children with PDD-NOS/autism receive 25 hours per week of structured intervention that targets their areas of need. It will be important that therapy focus on building his capacity to engage in reciprocal play with others, building imaginative play skills, as well as minimizing repetitive behaviors and play.

It will be important that Lively's teachers, therapists, parents, and medical professionals, maintain close contact with one another to insure his progress. It will be particularly important that he receive follow-up evaluations of his verbal reasoning skills (and eventually his skills in reading comprehension and written expression) since he is likely to require assistance in these areas.

So, here's my plan:

1. We have intake scheduled through the University of Michigan Autism and Communication Center. However, I'm a little worried about their ability to provide appropriate care to Lively based on an inside scoop. We're going to complete the intake and see how we feel.

2. We have appointments to see almost all of Lively's providers in the next few weeks, and I'm asking all of them about U of M's program, and if they have any other or better recommendations. If my blog-reading friends have information on local resources, I'd really appreciate hearing about them.

3. There is a private doctor in Ann Arbor who seems to be doing important and successful work with young autistic children. He is extremely expensive, and insurance does not cover his services at all. I have a bit of an issue with this. The cost for this care is high enough that Pete and I would have to do some serious belt-tightening to afford it, but if we never go out, ever, and start clipping coupons, we could make it work. And I'm a doctor folks. I work for a university, so although I don't get paid anything like what I would in private practice, I know Pete and I make more money than most families in this country, and it would be a struggle for us to pay for this care. And I just don't think it's right. Why should only the autistic kids that come from well-off families get help? Still, like most parents, I would do anything for my son's health and happiness. Perhaps I'll find out that this doctor donates free or reduced-cost care to families that can't afford to pay him, but if this is the case, it's not indicated on his website. I'd say, however, that there's a pretty good chance that I'm going to take Lively to see him for an initial assessment.

4. We're going to get lots of speech therapy.

5. We're probably going to add some more occupational therapy.

6. I'm going to try, very hard, not to lose my mind.

News from Livelyland

The good:

Lively is walking! Two weeks ago, Annie was popping bubbles in a long strip of plastic bubble wrap that came in a package. Lively picked up one end of the strip and walked across the room! He was completely unsupported, but I don't think he knew it.

A few days later, he picked up a drumstick and did this:

Within a couple of hours, he figured out how to walk without a drumstick! We were, as you can imagine, beyond thrilled.

The bad:

Sometime this last week, after being able to walk for only a couple days, we think Lively fell and hurt his left foot. His left side is his weak side due to his stroke. No one saw him do it, and we can't be sure that's what happened, but around a week ago, he just stopped walking. He will stand and hold our hands and walk around, but he favors his left foot. He just got a taste of walky-freedom, only to lose it within days.

More bad:

A week ago, Lively was seen by a developmental and behavioral pediatric specialist. This doctor had come very highly recommended by Lively's neurologist, and I can understand why. She seemed very knowledgeable, explained things well to us, and seemed very thorough. The following comes directly from her note:

Activity Level: Activity level appeared appropriate for age. He did not appear to be hyperactive.

Attention Span: He was able to remain in attention for less than 30 seconds with developmental task. He sat in the chair independently for the first five minutes and then would not even sit while on either mom or dad's lap.

Gross Motor: He repetitively makes a fist with his right hand and holds it and brings up to his mouth. There was some mild finger flapping noticed. He also rocks frequently from his left to his right foot and shakes his head repetitively. He seemed to enjoy standing, going from a sitting to a standing position while sitting on his father. He also demonstrates "W" sitting, which is suggestive of ligament laxity.

Fine Motor: Lively was not able to put coins into the piggy bank. He was able to pick up a spoon, though at times he would move the spoon about three times before picking it up. It was unclear if this was a repetitive motion or if this was because he had a difficult time picking it up. He also tried to use the buckles in his stroller to buckle himself in; however, he was unable to do this.

Speech and Language: Lively does a lot of jabbering and humming. I also heard him say "mama" during the examination. He does demonstrate some communicative intent but he is not always trying to have a conversation. He did smile imitatively and used sign language for more with his father. I also heard him say "dada" during the exam. He vocalized both vowels and consonants.

Mood and Affect: Overall, Lively was quite pleasant and engaged well with the examiner. He was frequently smiling and was very easy to soothe him.

Play: We did see multiple episodes of motoric play by Lively, including bouncing up and down on his dad's lap which appeared to be stereotypic at times. In addition, he demonstrated some repetitive play characterized by flicking and turning of toys, and repetitive banging of spoon on a chair. He demonstrated minimal symbolic play.

Cognition: Cognition appears to be delayed based on the quality of his vocalizations.

Relatedness: Lively demonstrated intermittent eye contact (preferentially directed to his caregivers), and demonstrated some signs of social connectedness as follows: he did come up to the examiner multiple times and smiled. He also took the examiner's hand at one point and he was constantly going back and socially referencing his parents. He also hit a drum with his mother when his mother initiated the game, and then gave her a hug. He played peek-a-boo with dad holding blocks in front of his eyes. He initiated a kiss with mom. He climbed on to the examiner's lap, held her skirt, and grabbed her hand. When we initially walked in, he had a smile on his face, then he sat down, looked at mom and dad and clapped.

However, at other times, he did not seem to be initiating interactions with his eye contact. He did not initiate play with either the examiner or with his parents. He also did not seem to be able to play back and forth with either his parents or the examiner. He did not bring toys to show.

Impression: Lively is a 19-month-old boy with a complicated past medical history including right-sided stroke thought to be perinatal in origin, history of infantile spasms, and seizure disorder, who presented with concerns of autism. Though it is difficult to fully determine whether or not he has autism due to his complex past medical history, and atypical behaviors that may be partially resultant from his previous neurological insults. He does manifest developmental delay, and he has some social interactions which are atypical including lack of initiating and offering of toys. Additionally, he also has some repetitive movement including hand flicking, rocking back and forth, and some hand flapping. Further workup is indicated.

Lively has been given the diagnosis "global developmental delay with concern for PDD-NOS." Pervasive Developmental Disorder - Not Otherwise Specified. This is one of the autism spectrum disorders. Although the name sounds quite vague, it actually means something very specific.

We have more developmental testing scheduled next week, and we are already scheduled for a 3 day, 9 hour intake with the University of Michigan Autism and Communication Disorders Center. If Lively keeps the PDD-NOS diagnosis, we may be eligible for an 18 month research/ intensive intervention project through UMACC. The specialist feels that Lively probably will keep the diagnosis.

That's all I have in me for now. More later.