Ben’s Preschool Evaluation and First IEP


Ben turns 3 at the end of April, so he will be transitioning from home-based early intervention to having his therapies in a preschool setting.  In our county, most kids with significant developmental or behavioral disabilities go to a designated “special needs school”.   I understand that a lot of parents and educators disagree with this approach, but we think it’s the right one for Ben at this time.

Earlier this month (the same week as our vehicular fiasco), he had a formal evaluation at the Center.  He first had his hearing and hearing aids checked briefly by their audiologist.  Ben is difficult to test using behavioral cues, so the audiologist was relieved to learn that he’ll be having a detailed ABR under general anesthesia tomorrow morning.


Then we all went to a different room, and we met all the therapists that Ben would be working with in school, as well as the school psychologist.  The physical therapist went first, and she put Ben down on the mat to watch him roll, crawl, sit up and stand with support.  We were pleased that we’ve already met Ben’s therapist – she filled in for our usual physical therapist a little over a year ago when she was on maternity leave.  Ben did very well.


Then they sat Ben in a little chair and tested how well he was able to manipulate objects with his hands and arms.  Ben sat very well and cooperated with all the tasks.   The school psychologist asked whether we wanted Ben’s IQ tested.  We consented, and she did her evaluation.  Through the entire process everyone asked us lots of questions about Ben’s routine, his likes/dislikes, special abilities, personality, and what our goals were for him.



We generated his IEP for the year, and read over and signed it.  Since the preschool operates year-round, Ben could technically start attending as soon as he turns three, but we all agreed to keep up home-based therapies a little longer; until August.  We asked questions about the preschool itself.  We learned that the classes are typically small (6-8 kids per teacher), kids work individually with the therapists at different times during the school day (or rather half-day), we are able to communicate back and forth with Ben’s teacher and therapists daily using a notebook, and at least once a month, his teacher will do a home visit to meet with us and discuss any concerns.  Ben will be continuing PT, OT (including working on oral feeds), ST, and will periodically meet with teachers for students with visual and hearing impairments.


The prospect of sending Ben to school fills us with anxiety, but at the moment we feel a little reassured after our IEP meeting.   For now it does appear that his educational needs will be met in this setting; we’ll see how things actually work in a few short months.


Feeding Difficulties


Ben has been tube fed since birth, and ever since then, we have been determined that he will one day learn to take most of his feeds by mouth.

Ben, however, has other ideas.

Our dedicated occupational therapist has been helping us to work with Ben for the last 2 1/2 years to get him to make the transition to oral feeds.  Unfortunately, we go through the following cycle over and over again:

  1. Ben does reasonably well for a few days,
  2. Ben then regresses and absolutely refuses all attempts at oral feeds,
  3. We back off for a few days to a few weeks.
  4. Repeat.

When Ben was a year old, we took him to a feeding specialist at our favorite tertiary care center.  Of course, he did really well during that session.  Our goal was to get him to eat at least 30 cc by mouth so that we could do a swallow study to make sure he wasn’t aspirating.  Unfortunately, we haven’t been able to get him to that 30 cc goal a year and a half later.

Finally, we visited the feeding specialist again 2 days before Christmas 2008, a year and a half after our initial visit.  We probably shouldn’t have waited this long.  Ben did reasonably well during that session again, the specialist was great, didn’t scold us for not bringing Ben in sooner, and he offered a lot of good, practical advice.  He instructed us to keep feeding attempts short (10 minutes) and consistent, offer very limited interaction during the feed itself, until Ben cooperates by opening his mouth for the spoon.


At that point we are to praise him, and offer him a brief reward (e.g. getting to flip a few pages of one of the board books that he loves so much), remove the reward, and start again.


We came home very hopeful, since Ben had done so well that day.

Unfortunately, we have hit another bump in the road; another period of regression.  Ben has started to open his mouth less and less, and he gets more and more upset with each attempt.  We have gotten to the point where he won’t even take one spoonful in the 10 minutes; he clamps his jaws shut tight, and he shakes his head from side to side.  Our feeding specialist is awesome; he is accessible by email.  I told him the problems we’ve been having, and he suggested offering Ben a single spoonful, holding out until he cooperates, however long that takes, and then rewarding him with praise and removing him from his highchair and letting him play.

Sounds good in theory, but unfortunately we are afraid that Ben can outlast us.   He is a stubborn little guy when he wants to be, and we do have three other kids to attend to.  Worst of all, since we started all this Ben hasn’t been his usual happy giggly self, and that makes me sad.

So I’m not sure what we’re going to do at this point.  I think we’ll pay another visit to the feeding clinic soon and see what strategies they suggest.  If we’re not successful in getting Ben to transition to oral feeds with a home-based program, we may need to enroll him in an intensive feeding program at the feeding clinic which itself isn’t an easy option because it is located an hour away from our home.


Meanwhile, Nate has recently tasted his very first bites of baby cereal.  He made it look so effortless.  Ben was sitting just a few feet away in his highchair, and was completely unimpressed.


Who knew that such a basic thing as eating could be so difficult for some kids.

Benji-Ben Update 11/08


Ben is now two and a half years old.  He is usually a happy, easygoing little guy who loves attention and outings.  He continues to do very well overall, although we are still working through some challenges.

His overall health is excellent!  He is rarely ever sick (knock on wood).  The last two winters he got Synagis shots to ward off the dreaded RSV, but this year he won’t be getting those.  We’ll have to make sure the two big boys wash their hands thoroughly when they get home from school.  Ben still has a tendency to get constipated (it’s one of the few things that makes him truly miserable), but that seems to respond well to a combination of fiber-enriched formula, prune juice and the occasional dose of Miralax.

He is still basically 100% g-tube fed.  He gets 4 bolus feeds during the day, and a continuous overnight feed as well.  Recently, we have been able to increase his daytime boluses, and he has been growing well for a little guy with CdLS.

He still wears hearing aids, and soon we’ll be getting a detailed ABR test for him that will probably be done under sedation.  For now he tolerates the aids well, although every so often we’ll find him holding one.  We just had his eyes checked last week.  Unfortunately, it looks like his nearsightedness has worsened, so we’ll probably be looking into getting him some glasses.  I’m not so sure how he’ll take to those since he resists having things on his face, but it’s worth a try.  We are also supposed to patch his left eye for one hour each day because of his strabismus, but we’ve not been as diligent about that as we should be.  Ben does seem to tolerate the patches much better than he used to.


He seems to become more mobile every day!  He has been rolling for several months, but it has only been in the last month or two that he has realized that he can roll to (or away from!) people or objects.  He has just learned that being on his tummy can be fun.  Who knows?  He might learn to ‘army crawl’ soon.  We practice walking and cruising with him, but he doesn’t seem to quite get it yet.  He enjoys standing at his Exersaucer, but doesn’t seem to quite understand what he is supposed to do in his gait trainer.  He can sit very well, but has a tendency to throw himself backwards when he’s tired of sitting.  He is just learning to catch himself with his left arm when he tips over.

Socially, he is very interested in watching his big brothers run and play.  He is just starting to notice Nate more, and has started imitating some of his baby sounds!


He still gets physical therapy once a week, speech therapy once a week, and occupational therapy twice a week.  We LOVE our therapists.  They all do a great job with Ben, and can usually get him to cooperate with them.  A little over a week ago, we met with everyone to begin planning for Ben’s transition into preschool.  He will likely be attending a local preschool for children with special needs.  He will be having a formal evaluation for that in March of 2009.  I can’t even begin to imagine sending Ben to school in six months!


By far the biggest challenge we still continue to face with Ben has been getting him to transition to oral feeds.  We have been working on this almost since Ben was born, but with seemingly very little real progress.  There have been a few occasions where he’ll do amazingly well (see the photo above), and then the next few days will refuse to eat anything at all, and we’ll have to start all over again almost from scratch. We just went through another episode like that in the last week.

I find this extremely frustrating.  Our occupational therapist is great; she has worked with Ben since he was just a few months old, and we know that a lot of this is a behavioral issue with Ben (he can be quite stubborn when he wants to be!)  She is very gentle and patient with him, but persistent.  And I think that’s what seems to work best with him.


So our journey continues.  It’s not always easy, but all the same, I love being Ben’s mom.

Two Year Well Child Visit

On Thursday we visited Ben’s pediatrician for his regularly scheduled checkup. Everyone but Isaac (who was at school) went along. Jonny was worried at first that Ben was going to have a shot, but was very relieved when we reassured him that Ben was done with shots for a while.

Ben weighs 16 lbs 2 oz, and is 27 inches tall. He has gained exactly 4 lbs over the last year. He is right at the 50th percentile for weight for baby boys with CdLS, and about the 25th for height. Our pediatrician was very pleased with his growth.  I am glad that he doesn’t expect the same rate of growth for Ben that he does for “typical” children.

We talked about development. Ben will always have global developmental delays, but he definitely makes slow but steady progress. He will now grasp and play with objects, roll end over end, and can sit unsupported for several minutes at a time (depending on his mood!) He coos, but doesn’t make a lot of consonant sounds. He has recently started to cry and fuss if one of his toys moves beyond his reach.

We talked about his Early Intervention services: right now he gets Physical therapy once a week, Occupational therapy twice a week (which includes feeding therapy), and Speech therapy twice monthly. We still continue to struggle with oral feeding. Sometimes he does GREAT, and opens his mouth up for the spoon (like he did for me tonight). At other times he resists any attempt to put anything edible in his mouth (like he did for his birthday cupcake). We just continue to work with him daily.

Ben is still virtually 100% tube fed.  Right now he is on mostly Nutren Junior formula, and gets a total of about 700 cc over a 24 hour period.  He seems to tolerate his feeds well, and we are just about to increase the volume of his overnight feeds a bit.  (We are maxxed out on how much he will tolerate in his daytime boluses).

We had a couple of new concerns:

  1. Ben needed a letter of medical necessity for a gait trainer of his very own (the one we have now is a loaner). Our pediatrician actually wrote one for us on the spot. Our PT will also write one, and hopefully we’ll get the ball rolling.
  2. We’ve noticed that Ben can ‘pop’ his right hip joint just for fun, and it doesn’t seem to hurt him at all. I can’t tell if the joint itself is unstable. Also, when supported, he walks with his feet pointed out, and his PT and OT thinks the external rotation of his feet is coming from his hips. So we’ll be getting X-rays of his hips to investigate.  At some point he may need to see an orthopedist.
  3. Ben has been horribly constipated for weeks! We’ve tried Karo syrup with very little success. It turns out, though, that we just started Ben on prune juice late last week, and it seems to work MUCH better than the Karo, so for now we’re holding off starting him on a prescription laxative.

We talked about appointments with other specialists.  There aren’t too many coming up in the near future.  We accidentally missed his appointment with audiology last week (oops!) and that got rescheduled for August.  He has an ophthomology appointment next week.  We haven’t needed to see Ben’s surgeons or the g-tube nurse in over a year.  We will probably make an appointment to touch base with Ben’s geneticist over the summer as well.

So things are going pretty well.  We are fortunate that Ben’s health continues to be very good overall.

Our next appointment for Ben at the pediatrician isn’t for 6 months.  Hopefully we won’t have a reason for him to be seen before then.

I wish I were a stay-at-home Mom…

Ben walker 1

…so I’d get to see Ben do all kinds of neat new things in therapy.

Last Friday our physical therapist brought a gait trainer for Ben to try out, and Mark took lots of photos. The trainer was a little too big for Ben; he is just a little guy who weighs about 16 lbs. I was told that he enjoyed standing in it, but doesn’t quite understand the whole point of walking in it yet.

Ben walker 2

I loved seeing the photos, but I felt sad that I wasn’t there to see all this happen, or to cheer for Ben.

It’s a good thing he has such a wonderful Daddy.

I hope our PT brings the gait trainer along again this Friday when I have the day off!


I Love My Spoon!

Ben Spoon 1

Yes, I know it’s been a long time since I updated this blog, but we’ve been so busy lately.

Ben has been doing GREAT with grasping toys and other objects. He especially loves board books and newspapers. He is a big fan of those full-color advertising fliers that come in the Sunday papers.

Lately, we’ve been doing something new at the dinner table – giving Ben his own spoon to hold with some food on it. He doesn’t seem to be too impressed with baby food these days, so in these photos he’s enjoying some of Mark’s homemade spaghetti sauce (I know, I know, not very reflux-friendly, but Ben’s Nissen fundoplication is still holding up well!)

Ben spoon 2

With a little encouragement he will now bring the spoon to his mouth and lick the spoon. Tonight he had some homemade potato and mushroom soup which he also seemed to enjoy.

Ben spoon 3

Getting Ben to transition to oral feeds has been a lot harder than we ever expected. I’ve found that we have to go at his pace, not ours, although we do have to be consistent and at least attempt oral feeds every day. Hopefully we’ll get there one day.


Smiling Ben

Even though he hasn’t been feeling well for over 2 weeks, Ben is definitely showing some signs of progress with his gross motor skills. He first showed signs of grasping toys and other objects months ago, however he quit altogether for some reason shortly after that. He became very resistant to having his left hand touched for any reason, and he made little effort to grasp anything (although he would happily bat at objects and spin them).

We mentioned all this to his physical and occupational therapists, and they thought that maybe he was having some sensory integration issues with his hand. So we started some exercises to de-sensitize his hands and arms. We have three plastic containers filled with different things; one contains rice, one has black beans, and one has lima beans. We started having him immerse his hand in each of these. At first he hated all of them, but he has since come to enjoy the rice and the black beans. For some reason he still hates the lima beans! Then we placed small rings into the beans and rice (almost submerged but still visible) for him to pull out, and he’s been doing great.

Ben OT sensory integration exercise

Since we’ve started those exercises a few months ago, we’ve seen definite signs of improvement. He now readily reaches for and grasps toys and rattles, and gleefully shakes them. He even puts his toothette (that we use for oral motor skills) near (but not in) his mouth:

Ben with toothette

One of his favorite toys these days is this drum.  It’s made of real goatskin and makes a very satisfying sound:

Ben with drum

He has done the 360 degree roll a few more times – we will have to make sure he doesn’t get too tangled in his feeding tube:

Tangled in feeding tube

And he is still working on his sitting:

Ben with stacking rings

A few days ago we had dinner at our favorite Mexican restaurant.  We put Ben in a big-boy highchair for the first time (and wedged him in well with his coat).  He played happily with his toy for a few minutes, then decided he’d had enough!

Ben at Mexican restaurant

We are SO pleased with his progress so far!  Hooray for Early Intervention!