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.


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.

New Gait Trainer!

We’ve had a loaner gait trainer for Ben for several months, but last week we finally got him one of his very own!   Our awesome physical therapist got the process started several months ago, and Ben’s pediatrician wrote a letter of medical necessity for it.  Both our private insurance and Medicaid approved it, so it shouldn’t cost us anything out of pocket.  For that we are very grateful.

It is quite a bit larger than the loaner, but so far Ben seems to like it.  He has finally managed to take a couple tentative steps FORWARD instead of backward like he usually does!

Ben at Church

Last Sunday I decided to spend a little one-on-one time with Ben during church.

Ben has been using a gait trainer in physical therapy to encourage him to bear weight on his legs, and hopefully learn to walk one day. Our house, however, isn’t very gait-trainer-friendly since we have rugs everywhere. Our church meets at one of the local high schools and therefore has large expanses of smooth floors perfect for gait trainers. Our physical therapist therefore suggested taking it to church with us to see if it worked better there.

Ben did fairly well. He still doesn’t know how to propel himself forward, but definitely deliberately pushes himself backwards. He had a great time, though, and tolerated being in the gait trainer for about 20 minutes.

When he got tired, we went to the nursery and spent some time with the other babies. He had a blast playing with the toys there.

And after that, we just hung out, got his feed going, and waited for service to be done. He was just about ready for a nap by that time.

I didn’t hear a word of the church service, and honestly didn’t feel like I missed anything. Hopefully the Good Lord will forgive me.

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!



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!