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A few weeks ago we took Lily for her (first) annual visit to the Down syndrome clinic. She was 12 months at the time, and the appointment consisted of a visit and evaluation with each of the following professionals:

• Pediatric Neurologist
• Occupational therapist
• Physical therapist
• Speech language pathologist
• Audiologist

We left the house with plenty of time to get downtown and still grab a coffee in the hospital coffee shop (or so we thought!) Turned out to be a challenge just getting there before 8am, let alone early. We made it with just a few minutes to spare (and no coffee…grrr). I wasn’t sure what to expect from Lily since we were in for a very long morning. Our time in the clinic was over four hours, but Lily really held up well with no nap and only one bottle. She was a real trooper, though she could barely keep her eyes open by the end and kept falling asleep in my arms waiting for the lab for her blood draw (to test thyroid).

We received the results of the evaluations, and they were basically what I’d expected. However, I have to be honest, some were harder to read than others. I also have to wonder if I predisposed the evaluators with my comments. I went in saying I felt her fine motor skills and speech were delayed. Guess what the results showed? Delays in fine motor and speech. It’s possible (likely) that I just know her better than anyone and am best able to evaluate and gauge where she is developmentally.  Still… I wonder. Next year I will not give them my opinion in advance.

I’ll share with y’all a brief overview and details from each of the areas in which she was tested.

Physical Therapy

Lily did great at this evaluation, showing off her impressive gross motor skills! One of the assessments put her at a GMQ (gross motor quotient) of 91, solidly in the range of average (which is great!). For reference, a score of 100 indicates a child developing in an average manner for age, 70 or below indicates significant delay, 70-85 indicates borderline delay, and anything between 85 and 115 indicates low average to high average range.  They also provide an age equivalent in three areas, and I’ll share her specific scores. Stationary Skills: between 11 and 13 months, Locomotion: 9 months (not sure why this was lower, considering 12 months is the average age that typically developing children are walking independently – with some obviously walking earlier and some later). Object Manipulation: 12 months.

Some of the excerpts of the comments in the report include, “Lily presents with typical ROM (range of motion) in the lower extremities. No significant laxity or excessive mobility noted. Low normal muscle tone in the trunk and lower extremities. Movement patterns at this developmental stage are similar to those of children without Down syndrome. She crawls proficiently, maintaining her hips in a neutral position and moving her legs in a reciprocal pattern. She can crawl up an entire flight of stairs. She can pull to stand and is starting to cruise.  Lily demonstrates gross motor skills in the range of 9-12 months, with some higher level skills as well. She demonstrates good control over her ankles and feet in supportive standing.”

I brought up treadmill training, which they were familiar with, but did not seem to know a lot about it.  They clearly did some research between our appointment and the report because they included details about Dr. Ulrich and the fact that the research results have been very promising. They don’t have the same treadmill used in the research, but do have a Lite Gait, which could be used to trial the protocol if we are interested. It goes beyond the potential benefit of walking up to 4 months sooner, but I don’t think we will pursue this right now because we have other areas that need greater focus of our time and budget. However, it is fascinating data if you’re interested in checking it out. And, if we have a fairy godmother who wants to send us a mini treadmill we’ll gladly trial the protocol with Lily

Speech-Language Pathology

This was one of the visits that I began by saying I felt she was delayed. Next time I won’t do that. I know they are professionals and I’m not questioning the results (because I really DO think she is delayed here LOL). However, I do have to wonder if the results were at all swayed by my comments. When you read some of the scores and comments you’ll understand why this was one of the more difficult reports for me to read.

I’ll begin with some excerpts from their report. “Lily was alert and social. She displayed appropriate social interaction for her age and stage of development. She smiled frequently, and laughed during play routines with the adults in the room. She used eye gaze and touch to support her communication, play, and  interaction. She used intentional communication during the evaluation to communicate a variety of pragmatic functions: she became animated to indicate excitement and pleasure; reached to request; and turned/pushed away to refuse or protest. Lily filled her turn vocally when engaged in playful routines. She produced several mid vowels and five consonants (H, M, B, D, Y) during interactive play; most often these vocalizations were vowel only or reduplicated combinations (eg. dadada, bababa).”

They used the Rossetti Infant-Toddler Language Scale to measure her language skills. On that scale she was scored the following: Interaction/Attachment: 9-12 months, Pragmatics: 9-12 months, Gesture: No items until the 9-12 months level (this is listed under Emerging Skills as 9-12 months, so I assume this means that she has not “mastered” any of the skills measured in this category but is showing emerging skills at the 9-12 month level), Play: 6-9 months, Language Comprehension: 6-9 months, Language Expression: 6-9 months.

Further comments related to the scores: “Lily’s strongest skills were demonstrated in the Interaction/Attachment and Pragmatics domains. These skills included displaying some fear of strangers, allowing release of contact in new situations, and using vocalizations more frequently during interactions. Lily demonstrated skills in language comprehension and expression that included looking at the person saying her name, vocalizing in response to verbal requests, vocalizing with intent. Lily is not yet waving “hi” or “bye” or saying “mama” or “dada” meaningfully and these skills can be viewed as ‘next steps.’ Lily presents with a phonology/speech delay and a receptive/expressive language delay. Lily’s performance today suggests that her receptive and expressive communication skills are developing somewhat more slowly than her cognitive and related sensorimotor skills. This suggests it would be a good time to begin to prioritize communication development”

In terms of Oral Motor, they had this to say, “General observation revealed no evidence of asymmetry or oral anomaly. Low oral motor tone was present, and it was also noted that Lily maintained an open mouth posture, with forward tongue carriage; these factors could interfere with articulatory precision. Overall, the structure and function of Lily’s speech mechanism were observed to be adequate for the support of functional speech.”

After reading the report, I am even more interested in what we can do to improve her oral motor tone. I was considering purchasing this kit from Talk Tools. However, an online friend was nice enough to send me the DVD, so I will watch that first and decide what to incorporate. If anyone has great tips or techniques on ways to improve tone in this area, I would love to hear from you! If you saw the stack of books on my coffee table waiting to be read, you’d know I need all the help I can get! I am in the process of completing my reading enough to formulate more of an official plan and daily routine to address some of these issues more directly.

Occupational Therapy

Another area I expected to show as delayed, and probably the least positive report of the three. I would like to note for the record (LOL) that she was overtired and hungry by the time we got to this evaluation. Some excerpts, with my commentary in italics, lol: “Lily demonstrates low muscle tone with hypermobile joints (really? because physical therapy did not seem to indicate this, but okay), especially noted at her wrists and fingers, consistent with her diagnosis of Down syndrome (oh, how comments like this IRRITATE me…. to be fair, G and I don’t really see eye to eye on this topic. He thinks we should be comparing her to the Ds population and expect results consistent with her diagnosis. I think we should be comparing her to the typical population and expect her to achieve or nearly achieve normal function on a typical timeline. I fully understand this may not be realistic, but that’s my opinion and I’m sticking to it. For someone who shares my view to the extreme, check out Naturally Better Kids. I’m reading the ebook right now. While she may be really, really out there in some regards, at least from my perspective, I do love her attitude. I certainly won’t implement all of her guidelines, but some of them I already do, and others I am further researching now.) There were no limits in upper extremity range of motion. Strength was normal during functional activity, with no asymmetries or abnormal movement patterns. She had short fingers and hands.”

On the Peabody Developing Motor Scale (PDMS-2) (same one used in the gross motor evaluation), she scored 76 on the Fine Motor Quotient (FMQ), putting her toward the bottom of the “borderline fine and visual motor skills.” See scale in the PT section above for more about the score ranges. For the age equivalents, she scored at 7 months for Grasping and 8 months for Visual Motor Integration. Observation notes: “Lily scored a FMQ of 76 indicating delayed fine and visual motor skills when compared to the general population. On the grasping section Lily grasped pellets using either a raking grasp or inferior pincer, although often swiped and pushed the pellet off the table, crumpled paper with her fingers and grasped a block with her fist. Lily banged blocks together at midline, banged a cup briefly on the table, transferred a block and extended her arm to pick up toys. Lily is able to crawl and move around the room independently. She is not yet helping with dressing.”

Obviously, the development of her fine motor skills is an area that we really need to focus on. Part of what may have held us back I think is Lily’s level of activity and gross motor focus. She just likes to move around, which isn’t usually helpful in working on fine motor skills. All of the reports also included a section with the therapists’ recommendations. Some were more thorough and helpful than others, but all have given me at least a few good ideas. The OT report was the least helpful in terms of what we can work on at home, but specifically gave a recommendation for outpatient OT services with treatment focused on “kinetic activity”, as well as a list of goals for the treating therapist. It doesn’t give me much to work with in terms of what I can do at home, but it does give me some good ideas on goals to set.

Summary

I’m not sure why I go into such detail here. I know there are friends and family who are interested and read these updates, and I’ve considered making my blog private since lately it seems a lot of this is really just, well, private. I’m not sure it’s really of any benefit to anyone other than us. It’s also a great way for me to journal and keep track of various milestones and information. At any rate, the day of evaluation was pretty exhausting for me, to be honest. Reading the reports was alternately invigorating and exhausting. I know that we have a lot of work to do. The impressive thing is that Lily has progressed to this point with little outside intervention. Early Intervention does visit once a month, but it’s usually more observation and discussion than actual hands-on therapy. The therapists are great resources, but I feel we need more. To this point the only focus has been gross motor, and even that has really been minimal and primarily my DIY efforts. I have not put nearly enough effort into speech or fine motor skills. That will change. As I said, I’m trying to get through a huge stack of books, and will put together a comprehensive plan of action to address these areas. I also hope to get her into some private therapy, partially to better equip myself in tackling all of this.

Thanks for the continued support and prayers!

Because a post just wouldn’t be complete without a photo or two, here’s a collage of iphone snapshots from the last several weeks.