We had an appointment at the Children’s Hospital Down syndrome clinic within their developmental program yesterday. It was great to see Angela Lombardo, master coordinator extraordinaire and be greeted by Ben Majewski, who works there who helped coordinate everything for us. You don’t have to have a Ds connection to work in the clinic, but – it just so happens that Angela’s teenage son Isiah has Ds and Ben also has Ds so they are true “insiders”. =) We are so fortunate to live within a 30 minute drive of one of the top Children’s Ds programs in the world!
First, we met with a speech therapist. She emailed me a report earlier than when the written report will come (within 2 weeks) because we are reviewing Julian’s IFSP (individualized family service plan) for the early intervention (EI) services he receives through the Thom Mystic Valley Center in Woburn next Thursday the 22nd with the team. Currently Julian receives speech once per month and the Ds clinic recommendation below as you see is for him to get at least 2x month moving forward leading to 1x week when he is two. So, it is important to have this in writing to back up my request for additional services when we meet with the EI team next week. FYI all of our EI visits happen in our home or at daycare, wherever Julian is that day (he is with Barbara my mother in law Tues/Thurs. and in daycare at Lincoln Laboratory Children’s Center M/W/F). So, I will let the speech therapists’ update speak for itself in terms of Julian’s speech development at 18 months. He is doing great!
DOWN SYNDROME PROGRAM
Julian Sherman is an 18 month old who was seen for a speech consultation as part of his visit to the Down Syndrome Program December 15, 2011. Julian continues to make progress in his speech and language development. Receptively he understands phrases associated with routines,, understands words for common objects and will retrieve such when asked. He also understands early prepositions and is working on choice making. Expressively, he uses approximately 14 signs and 4-5 verbal words. He is very vocal and babbles throughout the day. Phonemic repertoire includes the consonants /b, m and n/. There are no concerns around feeding.
In light of these findings, the following recommendations are made:
1. Continued enrollment in speech-language therapy through early intervention is recommended. He will benefit from receiving speech-language therapy at least every other week, moving towards weekly services by 2 years of age.
1. With regards to receptive language, expanded early word and concept knowledge, ability to identify pictures of objects in books and ability to follow simple commands should be targeted. Expressively, the primary focus should be on expanded expressive vocabulary and increase in use of a variety of communicative functions. From a speech production standpoint, would recommend targeting improved verbal imitation and expanded phonemic repertoire to include early consonants such as /p, t, d, s, f/. Expanded pretend play skills should be a specific target of therapy.
1. Continued modeling of new signs is strongly recommended. Continue to teach and model signs for animals, objects, actions, foods, toys, and people. Caregivers should also continue to pair verbal speech with signing to develop her speech sounds.
Next, we met with a nutritionist. We discussed foods he eats and his weight and such. He hasn’t gained much weight in the past three months, staying steady around 19 lbs or so. She said this sometimes happens that kids plateau but asked us about his diet (he eats a LOT!!). She was happy with what we feed him but recommended adding some additional protein (meats – we don’t eat much of it right now so hence Julian doesn’t…but needs to more! Today I packed him some meat balls).
She also said we can add some carnation instant breakfast to his whole milk in order to boost his calories. Interesting idea! That will be easy. She said also lots of cream cheese, butter, fat, fat and more fat on everything he eats!! She wasn’t concerned about his weight, but said we can also check in with our pediatrician at our 18 month well-baby check in to follow this closely as well. By the way, it has taken me a LONG time to let go of worrying about his weight. We had him tested for celiac disease at 15 months which happens with more frequently in the Ds population (see more information here, scroll down) just to make sure that wasn’t the issue.
With much prodding from my husband Tom and from doctors who follow him, who say – we will let YOU know when we are concerned….I have decided to let it go and just relax. He eats very well and is a growing, very active boy.
But if you want gift ideas for Julian this Christmas, feel free to give us fatty things for Julian to eat (aka no more plain crackers for you bud…we’ll add some peanut butter and bring on the butter soaked toast baby).
3) PHYSICAL THERAPY
Next up, PT. Julian is kicking butt in PT. He showed off during the visit by dragging a VERY heavy chair around the room, moving it with ease as he turned. He is ready to take steps now developmentally, but it is just a matter of time and his willingness to do so. He can climb up stairs with ease on his hands and knees and is learning how to climb down stairs too on hands and knees, that is a bit trickier and he needs more practice. He can climb up onto the couch (just did that last night for the first time with Tom!) I didn’t see it, but Tom yelled to me and we did the three cheers dance! He can walk around with his push toy and turn it. Here is a video of him at 17 months when he was just learning to turn it and at 15 months when he just started getting up and walking on the walker. Now he is an expert.
What we are working on now is independent standing to encourage Julian to be up on two feet on his own and get comfortable with it. Last week at PT through our weekly EI visits, Juilan stood for the FIRST TIME on his own (with his back supported against a wall) without buckling his knees down. So, we know he can do it. He just doesn’t like to….he prefers the floor and crawling because – heck, it’s faster for him!
The PT at the clinic “tricked” him into standing on his own which is what our PT through Early Intervention is working on as well. She put him up against the wall…and used her knees to block his knees from buckling down which is his automatic response. At the same time, she used the toy to distract him and engage him. After he was standing and didn’t buckle, she slowly pulled the toy away and whala! standing practice. Tom joked that he is going to get arm blocks for Julian’s legs (which is something rock climbers use to keep their arms straight for those who bend them…when they are not supposed to bend them to help them learn).
Julian’s personality is a little cautious and observant, he likes to explore things and sort of know his territory before diving in. So I think it is just a matter of his confidence being up on two feet…who knows how long this will take? We will just wait and see….I had predicted that Julian would walk around 24 months and if I were to predict it would take another 2-3 of months or sooner? But really, I have NO clue. He will do it when he does it….and that is fine with me!
4) PEDIATRIC DENTIST
Next we saw the dentist for Julian’s first check up! He passed with flying colors. They gave us a tooth brush of course. Sometimes children with Down syndrome have missing teeth, and you can tell if they don’t come in as a baby, then they aren’t going to come in period. So she checked his teeth. They look great and all of them are coming in. Sometimes children with Ds have very pointy teeth and one of Julian’s lower ones is a bit pointier than usual but it is not really pointy she said….and he will “grind the point” off as he grows up.
So how many teeth does Julian have right now? Let’s see….I think he has 11.5 teeth with a few more budding under his gums. To illustrate, I borrowed a photo below from this cool link “What everyone should know about the order of baby teeth,” but this timefarme it is important to note is on average for TYPICALLY developing children only, not for those with Ds. To learn more about the specific dental development and care for those with Ds, go here.
So on the above chart, Julian has the following teeth at 18 months:
One 6, with another coming in
7s coming in – but still well under the gums
8s coming in - but still well under the gums
So it seems for some reason Juilan’s teeth have all come in on a pretty “typical” schedule…so he doesn’t seem to have delayed eruption which is very common for children with Ds. And so far his teeth are not pointy….so we will just see how things go from now on. We do have to follow his teeth closely for other types of issues like he seems to have a slight underbite and also people with Ds are at higher risk for gum disease.
We saw Dr. Emily Davidson last, one of two pediatricians for the clinic (Dr. Brian Skotko is the other one, whom we saw on Julian’s very first appointment when he was one month old). She likes to be called Dr. Emily.
Discussed Julian’s overall health. He is doing very very well. Did an autism screening and she is not concerned about that. He was a little young to “pass” on certain questions….like does he point at things and try to get your attention/show them to you. He is not quite there yet developmentally with us, but he does point at pictures in books and makes sounds when “reading” his books.
Julian is a social guy and doesn’t exhibit any behaviors that might be of concern. For those curious about the autism screening, we were asked questions like – does he like to be bounced up and down on your knee? Does he look at you when his name is called? Does he point to things? Does he avoid eye contact with you? Does he do any odd behaviors with his hands? Does he play with toys appropriately?
Nothing really to report on this check up, other than Dr. Emily really checked in on his overall health – heart, ear/nose/throat (ENT), well baby visits, etc. etc. and make sure we are on track for all of our follow up appointments….which btw are many – he gets his 18 month well baby check up soon, a heart check up in early January, an ENT check up in April…so on, so forth. But he had a recent hearing test and passed that after getting one of his tubes that fell out put back in (same day as his eye surgery). So both his tubes are in now and he can hear. Yay!
We have an eye check up again in about 4-6 months. Last time he was checked was November of this year and his vision is slightly less than “typical” for kids his age but it isn’t at the point where he will need any assistance or glasses. She says she will follow him closely.
So, that’s Julian in a nutshell!
We are so proud of our peanut. Not only do I think he is the cutest little boy, but he is on track for accomplishing anything and everything he wants to. That’s my boy! (as Tom and his father Bob say).