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Melanie Cole (Host): Welcome. Today we’re talking about learning disabilities in children with cleft and craniofacial difference. My guest today is Dr. Meredith Albert. She’s a licensed Clinical Psychologist with the Cleft and Craniofacial Team at Shriners Hospitals for Children in Chicago. Dr. Albert so glad to have you with us. What an interesting topic. So, before we talk about this connection between cleft and craniofacial difference and learning disabilities; tell us what’s the role of a psychologist on the Cleft and Craniofacial Team?

Meredith Albert, PhD (Guest): Hi, well thank you so much for having me. I’m very happy to be here. on our particular team here in Chicago, we have two psychologists and we meet with patients and their families during daily surgical clinic visits on an as needed basis. And then we also meet with our patients during their annual and or biannual sometimes triannual team visits to discuss, consult, make recommendations, to support our patients social, emotional, behavioral, cognitive and academic functioning.

We also provide, depending on our availability, we like to do neuropsychological testing as needed to assess for a patient’s difficulties in areas of cognitive or academic or emotional functioning. And then I’m also involved in several different research projects with partners at other hospitals nationally.

Host: What an interesting profession that you are in. So, let’s talk about learning disabilities. How is that classified, a learning disability? What is really the definition of it?

Dr. Albert: That’s a good question because I think it’s something that not everyone understands very clearly. So, at the most basic level, learning disability is a neurological difference. It’s a difference in the way that someone’s brain is wired. Someone with a learning disability or a learning difference can reflect the differences in the way that someone learns, and it can affect their ability to do things like read or write or complete math related tasks and it’s really something we look at on a continuum. Some people can have really significant learning disabilities across multiple areas of functioning and sometimes people have something that’s more isolated to one specific area.

People can also experience difficulties in the area of executive functioning, which is our ability to do things like organize, plan, use abstract reasoning, our short or long-term memory or our ability to sustain our attention. So, underneath this umbrella of learning disability there are really more specialized types that someone can experience. So, again, like I was mentioning, it could be something like a specific area of reading that’s a difficulty or it could be someone has no difficulty with decoding, but they have a problem with comprehension.

What’s really, really important for people to understand is that having a learning disability is in no way a reflection of how smart you are. People with learning disabilities generally, are of average and oftentimes above average intelligence but they have difficulty understanding concepts or learning the way we typically see material taught in school.

Host: Wow. What an excellent definition. I just learned something I really didn’t know. So, thank you for clearing that up and explaining it so well. So, how susceptible are children with a diagnosis of cleft or another craniofacial condition to having a learning disability and what kinds do you see the most with them?

Dr. Albert: Okay, so, that’s a great question. So, kiddos who are diagnosed with a craniofacial condition and we can speak specifically about children with a cleft and oftentimes, a cleft palate can often – those difficulties can often be related to language. So, the research is still I would say fairly limited and some of the results have been mixed, but we completed a longitudinal research project here under the direction of Dr. Kathleen Kapp-Simon who was a psychologist that recently retired from our team at Shriners and what we found is that when children have ongoing language and speech impairments; they are more susceptible to reading impairments.

So, when you think about it, a child who has a cleft and if they have difficulty early on and we are saying the first couple of years of life and sometimes that persists later with their speech and articulation and things like that; then they generally have problems in an area of what we call phonological processing or their ability to hear sounds and produce sounds. So, if you think about it, in verbal speech, when you have a difficulty with producing a sound and communicating a sound; then that can certainly affect or translate to how you can read that word or what we call decode that sound on a written page.

So, other areas certainly can be affected such as our comprehension and then this in turn can affect a child’s ability to read, participate in language arts classes, writing and spelling are areas that are definitely often affected. But other classes that rely on reading skills such as science, social studies, so, it really can affect all areas of academic performance across school.

Other diagnostic groups that we treat here are for kids for instance we see a lot of kids with a lot of different syndromes but one diagnosis for kids that we see here is with craniosynostosis which is a condition in which one or more of the sutures in the skull closes too early in utero and that can affect normal brain growth and skull growth. So, those are kiddos also that we start developmental assessments with early on in life and keep track of how their academic performance is across all areas as they grow older.

Host: So, you just mentioned early on in life and so how early can these learning disabilities be identified and how are they diagnosed? How do you identify them?

Dr. Albert: So, that’s a great question. So, for a learning disability when it’s identified, for some things are developmental tasks. We can do that as early as six months to three months to one year of age. So, if we are looking at fine motor, or gross motor, developmental milestones, and things like that; then we can look at those. We use a measure called the Bailey which is a big measure where we assess all of these different areas and so those things can be identified and targeted early on in life.

Just because a child might have problems of gross motor or fine motor or even some of the early speech milestones; doesn’t necessarily mean they are going to have a difficulty when they are older and they become more school aged, but when we are talking about learning disabilities and areas of like reading and writing and math; usually we start to identify them at the beginning hopefully, of a child’s school years.

So, it really depends on the nature of the disability. Sometimes a child is able to start basic decoding skills and they can read but then when they start really moving from that reading to learn or from that learning to read piece and then start reading to learn; then we can see more difficulties with comprehension or as the material becomes more difficult, then those are kids that are really starting to fall behind.

So, what we do and the way that we can diagnose these things is that we will talk with parents, often usually bring it to our attention in our clinic visits and so we will get as much information as we can at our time of consultation and then we might try to seek out additional information from the teacher. Sometimes parents will talk about their child being defiant in school, they are not paying attention, they are getting into trouble, not completing homework and that’s always a red flag for me. Particularly for a kiddo that’s maybe a little bit older than kindergarten but when they are in first, second grade because I always ask my follow up question is how is everything going in school.

And not always, but often, parents might say oh they are having a hard time in reading or they are having a hard time in this area. Are they receiving services? And they answer oftentimes as probably not. And so, that’s where we really want to make sure we jump in and that child has a full assessment completed so that we can identify the nature of their learning difficulties and make sure we are giving correct remediation as appropriate.

And so, what we try to do is we will have families when they come into our clinics and we identify that these things are probably taking place; we’ll ask families to go back to their school district and initiate what’s called a case study so that hopefully the school psychologist or someone who works in the school setting will complete a full battery of testing. Oftentimes, that’s not possible and because at our Chicago hospital here, we see families from some pretty rural areas of the country where services are very limited and certainly schools are very overwhelmed with providing services; so if that testing can’t be completed in the school, we will then ask the parents to seek out local providers and we will help them try to find local providers that can complete neuropsychological testing or we will have children when we can, come back here and we’ll complete the neuropsychological testing here in our hospital.

Host: Well that was really segued into my next question which you basically answered about the services that parents and caregivers should seek for their child to support their functioning in school. So, thank you for answering that in advance. So, then tell us whether they can get that help with the school or you are helping them through Shriners, how can your team support patients and families to better cope with this disability? Tell us about your team and who is involved.

Dr. Albert: Okay. So, what will happen typically from a team day visit is that patients come in, usually around eight or eight thirty in the morning and they are seen by our entire team. And so, our team here at the Chicago Shriners Hospital is made up of psychologists, we have social workers, speech pathologists, our surgeons, our orthodontic and dental team, our x-ray technicians, our audiologists, out ENT specialists, our nurse practitioners, our nursing team. I think I’ve got everybody.

And so, the patients will come through and see our entire team and so, I might have a consult with a family and say oh the parents really suggesting that the child is not listening, they are not following directions; I start to think is there problems with comprehension, the speech pathologist might think oh is there a problem with receptive language ability. We start to consult and talk and then our audiologist comes in and says there’s some kind of hearing loss going on. This child needs tubes or some kind of surgical intervention that will really help support their hearing and so that’s why it’s really nice that we all get to work together, and all put our piece of the puzzle in.

For psychologists, what we’ll do is when patients leave our team visit and we do suspect some kind of learning issues or we know that there’s existing learning issues and the child’s not getting the correct services; we will ask parents to go back to the school and to have them obtain something called a 504 Plan where a child may get accommodations like extended test time or having questions read to them verbally. Other times children need a higher level of service and so we will make sure families understand how to request or initiate the case study to get an IEP or an individualized education program or plan in place so that the child can get more intensive pull out services or placement in a special education classroom or other times. There are a whole lot of other services such as RTI or response intervention when students are provided with interventions at increasing levels of intensity to accelerate their rate of learning and help support their area of difficulty.

But often what we find is when a child is having some sort of social emotional experience like anxiety, they are frustrated, they feel sad; if we can address all of these other needs such as their speech and language needs or their learning differences or their hearing differences and we can really figure out what we can do to support that child in those areas; a lot of those other emotional experiences can improve over time.

Host: That is so interesting. Dr. Albert, what a great educator you are. So, please wrap it up for us with your best advice for families who have a child with cleft and craniofacial difference, and they are concerned about learning disabilities as they might start to show up and what you’d like them to know about the services and support that you can give at Shriners.

Dr. Albert: Well, I think that it’s really important to make sure that when we have families come in for our annual team visit, we can spend a lot of time talking about all those areas of academic functioning and social emotional functioning and to really have good comprehensive evaluations and consultations completed so that your child is getting the best services to support their needs that they can back in their home environment.

Host: Thank you so much for being with us and sharing your expertise today. That wraps up another episode of Pediatric Specialty Care Spotlight with Shriners Hospitals for Children in Chicago. Head on over to our website at www.shrinerschicago.org for more information and to get connected with one of our providers. If you found this podcast as interesting as I did, please share with your friends and family members. Share on social media and be sure to check out all the other interesting podcasts in our library. Until next time, I’m Melanie Cole.