I’ve Got Wheels!

Ben doesn’t walk yet, and I suspect that it will be a few years before he does.  Because he is so small, we’ve gotten away with transporting him most places in an umbrella stroller.  After all, they’re lightweight, ultra-portable, and cheap.

Lately, however, we’re starting to realize that they aren’t such a great long-term option for Ben anymore.  He is getting bigger, and his posture isn’t the best in an umbrella stroller.  Also, they are sometimes hard to steer, and they force the adult pushing them to adopt a slightly stooped posture (which is hard on the lower back).  We did have a larger Jeep jogging stroller, however the seat back is broken, and it was rather bulky and cumbersome to use.  Ditto with the double stroller that we have – it’s just not practical to take most places, and Nate is just not interested in riding in a stroller anymore.

The physical therapists at Ben’s school suggested that we look into getting him a more durable wheelchair or stroller.  We went with one of the local medical supply companies, and they came out to Ben’s school one day, measured him, and gave us some options that would fit his body.  His therapists at school recommended the Convaid brand, so that’s what we got a Convaid Scout.   We placed the order several months ago, and it finally came in on Monday!

The representative from the medical supplier came out to help us adjust the straps, etc.  At first Ben wasn’t too sure…

…but then he decided that he definitely liked it!

He was proud to show off his new wheels at school on Tuesday.  Nate was happy to demonstrate how easy it is to push.

So far, we really like Ben’s new wheelchair/stroller.

It is lightweight, folds up quickly and easily, and fits in the trunk of either of our vans.  It rides higher than an umbrella stroller, so it’s easier on Mom’s and Dad’s backs.  And it steers wonderfully!  The big boys love to push him around in it.  It is also “transit ready”, which means that it can be strapped on to Ben’s bus for transportation to and from school (via the red rings visible in the photo above).  We think we will start sending Ben on the bus this summer, so we’ll see how it goes.  We got Ben’s pediatrician to fill out a handicap parking permit for him, but I have yet to mail it in.

We were fortunate that between our private insurance and Pennsylvania Medical Assistance, we had no out-of-pocket expense at all.  It also appears that because Ben is so little, we’ll be able to use this wheelchair for awhile.

Of course, I’m still hoping that Ben will walk someday.  I suppose time will tell, but for now I think we have a good solution.

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.

Overheard #2


Me, early one morning:  “Are you all ready for school?”

Isaac:  “No.  There’s one thing that’s missing.”

Me:  “What’s that?”

Isaac:  “Interest.”


This was my first week back to work after a too-short 8-week maternity leave.  Work is OK, but it certainly has been a challenge adjusting to life as a working mom of four.   And of course, Mark is adjusting to being the primary caregiver of four young boys!  We used to have a fairly predictable routine, but all that has changed with Nate’s birth and Jonny starting kindergarten.  The kids are having a little trouble adjusting to this new life too this week.

Isaac is doing great in second grade so far.  He is a good, obedient student, and we never have to worry about his behavior at school.  He seems to enjoy his class, his friends, and he seems to like his new teacher.  He and his friends play with these Bakugan figures at recess (apparently it’s the new cool toy for second graders), and he is always pestering us to buy more of them.

Isaac is playing AYSO soccer, and moved up to the under-10 team this fall.  He’s not too happy about the change, because the game has suddenly become more challenging.  He says he wants to quit the team, but of course we told him that he can’t until this fall season is over.  We have tried to remind him that he felt the same way when he started the under-8 team two years ago, and by the end of the second year he was really enjoying the game.

Jonny started all-day kindergarten, and it has definitely been a huge adjustment for him, since his preschool last year was just three mornings a week, and was decidedly unstructured.  Jonny is an active, gregarious child, so his teacher is already having issues with him talking in class when he shouldn’t be.  Poor Jonny.  I really want him to enjoy school, and I don’t want him to be labelled as a problem child in kindergarten.  Maybe we should have waited another year before starting school.  We’ll give it a month or two and see how he does.  I suppose we can always pull him out of kindergarten if it doesn’t work out.

Jonny is also playing soccer this fall, and he’s having a BLAST!

Ben and Nate are adjusting to each other.  They’ve been hanging out in their double stroller during soccer games and practice…

Adjusting isn’t always fun.  I can’t wait until we settle into a good NEW routine.

First Day of School

Tuesday morning was the official end of our summer vacation.  It was Jonny’s first day of kindergarten, and Isaac started second grade.  Surprisingly, the boys both got ready promptly.

Doesn’t Jonny look sooooo ready for kindergarten?  Of course Isaac realizes it’s just back to the same old routine so he doesn’t look nearly as thrilled.

Jonny did well for his first day.  To my relief, he walked back with the school secretary to his classroom without looking back.

This week the kindergarten class lets out at noon.  Jonny looked a little untidy after his first day, but happy.  Next week he’ll be going for full days.  I hope he continues to enjoy school even after the novelty has worn off.

In other news, Isaac has a brand new second grade teacher!  He really likes her.  I hope we get to meet her sometime soon.

And so the school year begins.  I’ve begun to notice that between schoolwork and after-school activities that time really flies when school is in session.  Before we know it, it will be summer again.

The Last Days of Summer

The month since Nate was born has gone by quickly. Along with the usual demands of taking care of a new baby, and Ben’s therapy sessions, the big boys have been home all summer. Even though this year we didn’t really do anything interesting or really fun, we still enjoyed each others’ company. And since I normally work full time, this summer was especially wonderful for me. I rarely have the opportunity to spend this much time with Mark and the kids.

In the last couple of weeks we have had some doctor and dentist visits:

Isaac and Jonny both had their regular dental checkups. We are ever so pleased to report that NEITHER ONE HAD ANY CAVITIES!!! That is especially a relief since Jonny has had FOUR cavities repaired in the last 6 months or so. We were so thrilled!

Then they both had their regular checkups at the pediatrician. They are both growing well and perfectly healthy. Jonny didn’t do too well with his vision screen at the pediatrician’s office. We had his vision checked yesterday at the optometrist and he doesn’t need glasses. Isaac needed a booster on his varicella vaccine, and poor Jonny got FOUR shots in preparation for entering kindergarten. They were both very sad to get shots, but they were troopers. I felt so sorry for them that we got them lots of Pokemon video games as rewards…but that’s another story.

Nate had his one month checkup. He is now gaining weight nicely, and was up to just shy of 10 lbs. He is healthy, and his only issue is a bad case of neonatal acne.

Ben had an audiology checkup to see if his hearing aids are at the right setting. They tried checking his hearing by using his behavioral responses to sound, but that wasn’t too helpful at the lower decibel levels. We therefore have to arrange an ABR under sedation to get a better idea of what he can actually hear. He hasn’t had an ABR since his first year of life, so I’m curious to see if his hearing has improved as he has grown, since this is something that can happen with kids with CdLS.

We also made him an appointment to see the pediatrician to talk about his feeds and some other issues. Ben seems to have gone through a growth spurt this summer! He is now almost 19 lbs, and we know he has grown an inch or two in height. So his tube feeds are going well, but we had been having some awful constipation problems. We are changing his formula to include some fiber, continuing his prune juice, and increasing his water intake, and already we are seeing an improvement.

This weekend we went to the open house for Isaac and Jonny’s school, except that it wasn’t. A teacher hasn’t yet been hired for Isaac’s 2nd grade class, and much to my disappointment, the classroom was locked so we couldn’t even see it. So we headed to the library instead. Ben had a great time getting out of the house – we haven’t been on too many outings this summer. That’s how boring we have been lately.

I am sad that summer is ending and the big kids will be back to school next week. I will miss them.

I do hope that next summer we can do some more interesting things than we did this year!

First Grade Report Card

For reasons that are unclear to me, in our school district, marking periods do not coincide with school breaks.  Isaac got his report card on Friday for the second marking period of the year that ended sometime last week.  He did very well:

Report card 1

His religion grades are OK, but we think they’re not great because he isn’t Catholic, and isn’t familiar with all those Catholic saints and customs.  Overall we were very pleased.

There were a couple of things that his teacher wants him to work on.  I am sorry to say that one of these was my  fault – tardies!!!:

Report card 2

Isn’t that terrible??? I really should get up earlier!  I promised Isaac I would do better.

If you look at the report card, there is one area that he does really well in, and that is written expression.  He has to write something almost every day for “Journal”.  If you ask him directly, he says he doesn’t enjoy this, but I think he does.

Isaac journal

“I take care of my baby brothr Ben.  He likes me so much that one time he fell asleep in my lap.”