Discontent with Incontinence

I have a confession to make.  Having a child with disabilities has turned me into a very undiplomatic person.  I get very impatient when people can't do their jobs and I must call them up and remind them how to do them.  I know that, as parents, it is our job to make sure everything is being done for our kids.  It's what we sign up for.  And I started out so nice.  So kind.  So patient.  But over the past 10 years of people being so inept, I have gotten cranky.  And I realize that's not good.  You catch more flies with honey than vinegar.  But the more people flounder, the more I want to tell them how much they totally suck at their jobs.

But let me catch you up as to why I've become a major cranky pants that resorts to yelling at people over the phone and telling them what for.  Soren was born in 2003.  Like any parents of a baby, we paid for his diapers.  However when it became clear that potty training wasn't going to be an option for our boy, diapering/incontinence supplies started being subsidized.  Now, I'm a little fuzzy as to when this started.  But according to my records, it's at least 2010.  All we needed was a prescription from Soren's pediatrician.  Yippee!  However, our primary insurance through Aaron's work doesn't cover incontinence supplies.  Boo.  But Soren has "medically necessary" MediCal and they cover incontinence supplies.  Like any secondary, they need a letter of denial from the primary.  I have one such letter from 2011 that I keep in The Incontinence Supplies File.  That letter of denial means that we've been accepted to the World of Free Diapers, Pads and Underpads.  And in the expensive world of a child with disabilities, that means a lot.

A wonderful company called Shield Healthcare used to provide Soren's supplies.  They'd deliver every month like clockwork.  Authorizations only had to be procured once a year.  And while I'm sure I'm remembering this much rosier than reality, I really do think they were awesome.  Then MediCal changed stuff around and Soren's new coverage didn't work with Shield (no idea why).

A new supplier was assigned.  Hoops had to be jumped through.  The prescription from his pediatrician that had seen Soren since birth and new his entire medical history no longer worked anymore.  That would be too logical!  I had to take Soren to a MediCal doctor to prove that Soren was disabled so the doctor could sign a form saying Soren needed these supplies.  Under the new system, the supplier had to get authorizations every 3 months or so.  And you know what that meant?  A delay in delivering diapers!  Do you know what a delay in delivering diapers means?  A really tense mom!

Since I was still at the beginning of this journey, I got things done quickly and made friends with a lovely VP of Operations at MediCal who gave Soren a standing authorization.  The supply company just had to fax the request and the authorization would be sent right to them.  Sounds simple enough right?  Yeah, it does!  But, sadly, it rarely was.

The first company we were assigned was okay.  But they caused me enough frustration that I asked my VP of Ops if we could change companies.  BIG MISTAKE.  The other company was so bad I wanted to tear my eyes out.  The receptionist there was rude and a brilliant liar.  She would constantly tell me that our order was being delivered and when it wasn't I would call and find out that Soren's diapers had been discontinued.  Well then, how could our order possibly be en route?  So after a couple months of this nonsense, I begged the VP of Ops to be changed back to the original company.  The good thing about this company is they were relatively consistent and, when they weren't, they were driving distance from my house so I could go pick up stuff myself.

Fast forward to years later...three weeks ago.  I called to see when we'd be getting our delivery.  The supply company said they'd sent the request for the authorization to the doctor and not heard back.  I told them (once again) that they didn't need to send the request to the doctor.  They needed to send it to directly to MediCal.  I gave them the fax number.  Then, since we were nearly out of diapers, I drove to the supply company and bought a bunch to cover us until this was all cleared up and we got our delivery as I'd done many times before.

You may be asking yourself, "Hey Amy, why don't you just go to the store and buy some diapers?"  Well, let me tell you.  We can buy Poise pads at the store (thank goodness for bad bladder control, eh ladies?) which we have done, because for some reason Soren's order does not have an even number of diapers to pads.  We can even buy the underpads or "chucks" at a store.  In fact, we could get those at a pet store!  But we'd never need to because for some reason our order has a crazy amount of chucks.  Seriously, I think I could carpet my house with them (granted, I have a small house).

But Soren is in that sweet spot where he's too big for children's diapers and too small for adult diapers.  So getting them from a store is a no go.  We have to get them from this supply company.  And if we don't...well...things would be very messy at our house.  Yet, whenever I tell the guy at the supply company that I'm coming to purchase a case of diapers, he seems surprised.  "Are you sure?  That will be expensive."  Oh, but the alternative is so much more expensive, sir.  So much more.

After picking up the diapers, being a busy mom, I forgot about the diaper delivery for a week and then called saying, "Hey, when are those supplies being delivered?"  They then said they sent another form to the doctor.  This is when I got cranky, telling them that they didn't need to send a form to the doctor.  That I told them that a week ago.  They said this was a different form.  This was a yearly form and they needed it filled out.  I was pretty confident these guys were wrong again.  And this is when diplomacy went out the window, cause I told them that I thought they were wrong.  But in the event that they weren't, which I doubted, since I'd fixed the last problem, why didn't they call me and ask for my help?   Didn't they want this form filled out?  Didn't they want the money for these diapers?  Wouldn't it behoove them to move this forward?  I told them that, as usual, I would take care of this and get things sorted out.  In other words, I would do their job.  Yeah, I said that to them.  Again, not diplomatic of me, I know.  I then tried to contact my VP of Op, but she wasn't available.  So I took the next logical step and I tried to make an appointment for Soren to see the doctor.

One problem was that the supply company had sent the form to the wrong doctor.  Now this wasn't entirely their fault.  MediCal had switched Soren's doctor, which is something they like to do.  So it was no wonder they weren't getting a response.  Since Soren doesn't really see the MediCal doctor, I didn't really care what doctor we went to see.  I just needed to get this done.  I explained the situation with the form and the diapers to the receptionist, but they didn't have an appointment for a week.  I understood.  I was calling at the last minute.  Beggars can't be choosers.  Desperate, I was going to go purchase more diapers from the supply company that I just yelled at when the doctor's office called back.  They had a cancelation.  They could see Soren that day!  The trouble was it would be cutting it close with when I needed to pick up Moira.  But desperate for diapers, I decided to go for it!

I showed up early, filled out the medical history paperwork, and then waited.  And waited.  And waited.  We were early, but everyone else was taking forever.  Ugh.  Once we got in the exam room, it was really fast.  I explained the whole thing to the doctor.  That we actually didn't really go to this office.  We just needed him to fill out this paperwork so Soren could get his supplies.  The doctor thought it was rather silly that we couldn't go to Soren's regular pediatrician, which I totally agreed with, but whatcha gonna do?  The doctor filled out the form and set us free!  Whoopee!  (We were about 10 minutes late picking up Moira, but she survived.)

The next day I put on a big smile, took the form personally to the supply company, and picked up the diapers.  Yay!  Awesome!  Done!

But then yesterday, a delivery guy showed up with another delivery for us.  I guessed this was to make up for the almost 2 months without supplies.  And since I'm never one to refuse free diapers, I was happy to see him.  But then I looked and the delivery was 90% wrong!  What the heck?  It had pull-ups instead of diapers.  Wrong.  And thin pads instead of ultra pads.  Wrong.  I sent back the pull-ups.  I didn't register the thin pads until later.  Ugh.

So today I drove on down today to exchange the pads.  That went smooth as silk.  Then I mentioned the pull-ups/diaper mix up.  Well, this sent them into a tailspin.  Twenty minutes later, the first kind fellow said that the order that I picked up last week was the order I paid for.  I sighed.  Um, no it wasn't.  "Yes it was," he insisted.

One thing that really bugs me is when people try to tell me something happened in my life that I know for a fact didn't happen.  Dude, we both were there.  But since you don't remember, I will take you through it step-by-step until you remember.  So I did.  I told him about STEP 1: The Authorization.  That's when I came in and paid for the diapers.  STEP 2: The Doctor's Form.  That's when I brought the form in and handed it TO THIS GUY and then he PERSONALLY loaded the boxes into my car.  Oh yeah!!!  He remembered!!!

So this fellow disappeared for another twenty minutes or so.  Next thing I knew some other guy came out saying that they couldn't fulfill the order because he just found out that Soren had primary insurance from Blue Cross and he didn't have a denial letter from Blue Cross.  Okay now people, Soren has had primary insurance from Blue Cross since birth.  Actually, we were covered under Blue Cross before Soren even existed.  It was a pre-existing insurance!

But today, when I arrive, this guy looks on his computer and sees that a) Soren suddenly has Blue Cross and b) he's spoken to someone from Blue Cross and NO RECORDS OF DENIAL FOR THE INCONTINENCE SUPPLIES HAVE EVER EXISTED!  So, because of this newfound information, he has to write Blue Cross a letter of request for said supplies.  Then they have to wait for a letter of denial.  And until they got that, they could not fulfill this order.

Ok, remember how I just wrote that it really bugs me when people try to tell me things happened that didn't happen?  Well, by that same token, it also bugs me when people try to tell me that things are true that I know are untrue.

1. As noted above, Soren has been covered by Blue Cross since forever.
2. All medical entities involved with Soren's care have been told about this primary insurance.  If they claim that they don't know this or are suddenly finding out about this from their computers by some sort of magic, it makes my brain hurt.
3. This supplier claiming that there have been no letters of denial from Blue Cross is an absolute fallacy because... 
4. I knew for a fact that these letters exist because I HAD ONE IN A FILE IN MY HOUSE!!!

All I could think was, "I've been here 45 minutes and these guys have managed to dig up another problem.  I didn't come here to prove anything.  I didn't bring my Incontinence File full of information.  I certainly didn't come here for a fight!  I came here because their delivery guy CAME TO MY HOUSE!!!  WITH THE WRONG ORDER!!!  Why am I suddenly the one having to wait?  And once again, why I am the only one that can provide information again?!"  So, at this point, my FACE WAS ON FIRE!!!!

But I kept it together and told him what I was yelling inside my head.  But it did this all in a very calm, cool, and collected voice.  I told him that delivery guy showed up on my doorstep yesterday with the wrong supplies.  I came there, just trying to correct their mistake.  We've had Blue Cross forever.  It's unfortunate that the computer system didn't indicate that.  As for the letter of denial, I informed him that I was quite confident that I had one in my Incontinence Supplies Folder (I didn't want to be too cocky in case it wasn't where I thought it was) and I would happily fax it to him when I got home.

And because I did not yell or break into tears or read him the riot act, do you know what happened?  Fifteen minutes later, he appeared with 2 cases of diapers!  Just in case this whole approval thing took a little longer!  So I got the supplies from last week AND then a full order this week!

And you know what else?  That letter of denial was exactly where I thought it was!  I faxed it right to the guy within ten minutes, as promised.  Once again, they had a problem and I supplied the solution.

So while I am trying my very best to reinstate diplomacy, it is challenging.  Especially since this supply company is perfectly situated between a police station and my favorite fried chicken restaurant, Dinah's Chicken.  The real miracle is that I didn't end up in jail or with a bucket of crispy chicken all to myself.

Amy

A Rough Summer

I haven't written in a long time because I always want to tell you all positive news.  But the thing is, Soren has had a really rough summer with his seizures.  And his seizures have changed in nature, which seems to happen every couple years.  It's been a frustrating, exhausting time.

We've been trying various things to try and get better control and I've been waiting to see if they'd work.  We've tried:

• Being regimented with his morning and evening medication timing
• Moving his evening does later so that it would last all the way into the morning (Soren tends to seize upon waking)
• Decreasing his calories on the Ketogenic Diet to make him more ketotic
• Increasing the dosage of both medicines

All of these seemed to have some sort of effect for a short period of time, but then they would wear off and Soren would start seizing again.  

His seizure log for the summer:

June: 19 seizures
July:  39 seizures
August: 41 seizures

I turned my desk calendar to September yesterday.  Since Soren's birthday is later this month, the images for September are devoted to him.  It's collage of 6 pictures of Soren from last year.  Adorable images of him bright eyed and smiling.  And while I've been very aware that we haven't seen Soren smile or heard him laugh in a very long time, these images really drove it home.  These pictures were taken back when he was having only 3 seizures in a month.  And I was so greedy then--I wanted complete seizure control.  Now I would take 3 seizures a week if we could get it!  Unfortunately, he's been having 3 a day all too often.

What's Soren like having all these seizures?  Well, he's much more quiet.  Not his usual chatty self.  More serene.  He listens and wants to be part of the action.  He also really wants to be snuggled a lot.  It's as if he's lonely.    

Surprisingly, he bounces back from the seizures relatively quickly.  They slam him hard, he conks out, but then he rallies.

So what's next?  Well, we are continuing to try other options.  The problem with intractable seizures is that they don't respond well to medicines.  Soren is living proof of that.  But we won't give up.  We are determined to see that smile and hear that laugh again.

Amy

At Long Last, A New Bathing System!

It's true!  The new bathing system was finally delivered!

I want to thank the Lanterman Regional Center for paying $3,668 of this $4,368 bathing system.  We were then going to cover the remaining $700 when our friends at the Talbert Family Foundation emailed me.  They had seen my previous post on the Bathing System Saga and offered to pay for the entire system!  Well, as luck would have it, this was the day after Lanterman agreed to pay their portion.  So I asked Julie Talbert if they would like to pay the remaining $700.  She said yes and the check immediately came in the mail!  How's that for generosity?!

It then took 2 weeks to order and a couple days to build.  Then the came to deliver it and we ran into a hitch.  Well, of course we did!  Nothing is simple, right?  See, we live in a house built in the 1940's.  The bathroom cabinet cuts into the bathtub in this wacky way.  The way the seat was set up, Soren was supposed to be facing the shower head, but he would also be facing the cabinet.  Soren has some long legs that are only getting longer.  There was going to be no room for his legs in between the chair and the cabinet.  So I asked for them to turn the system around so that Soren's head would be facing away from the shower head.  Way easier said than done.  The whole thing had to be taken away, taken apart, rebuilt and brought back.  Which, of course, took another week or so.

The guy came back on Tuesday with it all reassembled.  He showed me how it worked, we did adjustments, and all seemed great.  I then suggested that we put Soren in the seat to do final tweaks on the seat and make sure it actually worked with his 60 pound boy in it.  Well, good thing I did because while it glided smooth as silk without Soren, it was suddenly all whackadoo once this big boy was throwing things all off kilter.  But the technician was great and did all the adjustments.  He was very serious about making sure Soren was safe and comfortable and that I knew what I was doing before he left.  I was actually impressed.

So yesterday, we took this baby out for its first run.  I used the lift to get Soren to his bed, stripped him down, used the lift to get him to the bath seat, wheeled him to the bathroom, clicked him over to the tub, showered him (and got a bit of a shower myself), clicked him back over, wheeled him back to his room, and used the lift to get him back to his bed.  Viola!

Now, in all honesty, it was way clunkier than than.  We have a lot of kinks to work out.  The transferring to and from the seat could go more smoothly.  Soren seemed quite mortified through the entire process, though he wasn't fighting me, which was good.  And we need to replace the shower head with a hand held one to make that part easier.

But we'll get there!  After all, I'm going to have a lot of practice!

I am just so thankful to have this new system and to be figuring out this new set of challenges.

Amy

The Bathing System Saga

Okay, before I get into the Saga of the Bathing System, let me update you on Soren.

It's been over a month since I last wrote.  At that time, Soren was having some big problems with daily seizures.  We tried some stuff that really didn't seem to work and then all of the sudden, Soren's seizures normalized to just 1 per week.

But before we got too cocky, they came back.  Most of March and early April he was having daily seizures.  During Spring Break, Soren was in a great mood one day, but then had a seizure one evening and another the next morning.  He was wiped out and cranky the rest of the day (not that I blame him). That "double whammy" really took its toll.

I increased his morning meds a couple weeks ago and have now increased his evening meds, so I'm crossing my fingers that this helps.  In between the seizures, he's such a happy, engaged, silly boy.  And if the seizures are small enough, he's bouncing back quickly.  We'd just really like to finally get rid of these things.

Now, onto the bathing system.  Soren cannot sit up alone in the tub, so he has a Rifton bath seat which has done us well for the past 8 years (seriously, he got it when he was 2).  With this seat, I lift Soren from our bed to the bathroom, put him on the seat, bathe him, lift him again, and put him back on the bed.  Now, this is all well and good when you're dealing with a little boy.  However, 3 years ago, Soren started getting big and I'm only a wee 5 feet tall.

So, in 2011, we started working on getting a bathing system.  After doing research, we decided we needed a system where I could use our Liko Lift to put Soren on a bathing seat that's on wheels, roll him into the bathroom, click the seat over into the tub, bathe him, click him back, and then use the lift to move him again once he was dry and ready.

We picked one out, submitted it to our insurance, they approved it, and the seat was delivered.  Only one problem.  The seat didn't work in our bathroom!  Our tub is blocked a bit by the cabinet and, ugh, it just didn't work.  So they took it away and I did more research.  There was one piece on that chair that was causing problems.  So I found another that didn't have this piece.

Once again, we submitted to our insurance.  But, in the time between Seat 1 and Seat 2, our insurance changed the rules on Durable Medical Equipment (DME).  They no longer considered bathing systems for the disabled DME.  I have no idea what a bathing system is if it isn't that.  But, nonetheless, we were denied.

Because he is severely disabled, Soren has MediCal.  So, the next step was applying to MediCal to see if they would cover the seat.  (Keep in ming that this seat is priced at $3,689.)  But MediCal is hardly in any rush to approve such things.  In fact, they wanted me to apply to CCS (California Children's Services) to pay for it instead.  The only hitch with this is that Soren's CCS case had been closed about 3 years earlier because he'd "aged out" or something (I'm not sure, I'm constantly baffled).

But MediCal insisted, so I persisted.  I finally got CCS to reopen Soren's case.  I had to give them Soren's most up-to-date information, which includes his medical diagnosis.  Well, this can be a bit of a problem.  Soren's got a lot of things going on.  I consider his biggest problem to be Epilepsy, but CCS does not consider a seizure disorder as a worthy condition to warrant medical equipment.  Never mind that it's the seizures that have caused his global developmental delay.  They want big flashy diagnoses like Cerebral Palsy and Autism.  Well, as luck would have it, Soren also has these on his list of diagnosis, so I gave them the doctors' reports and hoped for the best.

Unfortunately, after lots of hemming and hawing, CCS denied Soren this piece of equipment.  So, I went back to MediCal and told them that Soren had been denied.  "Why?" they asked.  I explained that, as far as I understood, it was because his diagnosis didn't fit the bill.  "Why?" they asked.  "I don't know," I replied truly not knowing why but knowing that I just wanted to move forward with this.

By now, I'd actually developed a nice relationship with the Manager at MediCal.  She was also helping me deal with the monthly denial letters I was getting from MediCal for Soren's incontinence/diapering supplies.  Thanks to her efforts, she made sure that I didn't have to wrap Soren's behind in old rags by putting the right information into the computer so that we got an automatic approval.

So, she pushed the paperwork through and got us an approval for the bathing system.  Huzzah!  After 2 1/2 years the nightmare was about to end!  My back would be saved!  All would be right with the world!  Except...that didn't happen.  When they delivered the bath seat, it was the kind that sits in the tub for old people.  You know, just a plastic and metal chair?  Before they guy could even take the plastic off, I told him to put it back in the car.  I wasn't accepting it.  I then called the Manager.  She said she'd gotten a note that I'd refused the seat.  I admitted this was true.  Soren could never use this seat.  Soren cannot step into a tub and sit in a seat.  I wish he could!  But sadly, this was not the seat we were looking for.

I re-sent her the information on the seat that we wanted.  She saw the price tag of $3,689 and realized that this item was WAY out of MediCal's allotted amount.  (I think the seat they sent was $150.)  I was so bummed.  I thought I was close to the finish line, but it got moved on me yet again.

Now, at many points during this over 2 year ordeal, my husband (seeing my immense frustration and listening to my manic rants) suggested that we save up the money and buy the seat ourselves.  But I was in too deep by this point.  I'd written too many letters, made too many calls, and harassed too many doctors.  And it wasn't like I was asking for the moon.  This is an item that is medically necessary for my severely disabled kid!

In fact, Soren has a friend that got the exact seat we were asking for right away--no hassle--from CCS.  The difference is the diagnosis.  This boy's diagnosis fits their magic criteria.  But if these people actually met Soren, they'd see that he is much more disabled.  He just doesn't have the appropriate diagnosis to match.

But I wasn't ready to give up.  I was going to get this chair!  And I had one more option:  The Regional Center.

In California, there is an agency called the Regional Center that supports children and adults with developmental disabilities.  Soren has been with the Lanterman Regional Center since he was a baby and they have provided amazing things for him.  Therapies, camps, equipment, and they even helped pay for our ramp van.  Way back when this bath seat saga started, I asked Soren's Case Manager if the Lanterman could pay for the chair.  She said she could submit the paperwork and see.  The only problem was, Lanterman is the last resort in these cases.  I had to have letters of denial from every other possible source before I could submit my request.

So, when the Manager at MediCal said that they couldn't pay for the seat, I excitedly said, "Fine!  Can I just get a letter of denial?  That's ALL I need!"  I think she must have heard that I was at my wit's end (and she was probably sick of talking to me).  I got the letter the next week.

I submitted a pile of paperwork to Lanterman.  By now I had acquired a letter from Soren's pediatrician and a letter from his neurologist, both stating why this piece of equipment was necessary. (Originally I only had the letter from the pediatrician, which should have sufficed.  But either MediCal or CCS requested a letter from the neurologist, which is rather unusual.)  I had the letter of denial from our insurance, CCS, and now MediCal.  I had info on the piece of equipment with the price.  I sent it in and at the end of 2012, I was told it was approved!  Huzzah!  Happy dancing all around!

But it's never that simple.  Soren's Case Manager said that a Rep from the equipment company that they worked with needed to come out and assess if this was the best seat for Soren.  I was totally fine with that.  Anything to move this forward.  However, in doing that, we discovered that the Omni seat that I had so desperately been pining for wasn't actually the best seat for Soren.  The Rep recommended another seat.  It positioned Soren much more safely, so even though it's the ugliest piece of medical equipment I've ever seen, we had the Rep submit the quote for that piece.  The trouble is, it was MORE expensive!  It came in at a whopping $4,875!

Well, then Lanterman had to get some other companies to give quotes.  Which means I had to schedule another visit with another vendor--who didn't show up during his allotted time. (I'm a busy lady, people!  And he was actually busy with another client.  But still.)  But he did come in with a cheaper quote, bringing the price down to $4,368.

Now, remember, the price for the original, approved seat was $3,689.  The price difference is $679.  And Lanterman was now questioning whether to pay for the seat at all.  They want to know why it's this seat instead of the other seat.  I noted that it's not because it's visually pleasing.  It's because it's safer and more appropriate for my kid.  So I proposed that if they cover the amount that was already approved, we'd cover the difference.  That sounds fair, right?

Currently, I am waiting for the answer to this proposal.  Soren is currently 9 1/2 years old, approximately 52" and 54 lbs.  I'm optimistic that we will get this seat before he outgrows me.  Hopefully this saga will soon be over and we will finally have this Bathing System!

Amy

Troubled Waters

Soren has had a really rough start of the year.  For some inexplicable reason his seizures have increased greatly.  We'd gotten him down to 3 per month.  But in January he had 16 and so far in February he's already had 10!

When I saw that things were increasing, we went to see his neurologist in January.  We did a little adjustment of his meds in the hope that it would control things better.  But instead, the nature of his seizures seem to be changing.  Usually he has Tonic-Clonic (aka Grand Mal) seizures that last about 4 minutes.  For those of you not versed in seizure terminology, here is the definition of a Tonic-Clonic from the Epilepsy Foundation:

Generalized tonic-clonic seizures are the most common and the best known type of generalized seizure.  They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).

During the tonic phase, breathing may decrease or cease altogether, producing cyanosis (turning blue) of lips, nail beds, and face.  Breathing typically returns during the clonic (jerking) phase, but it may be irregular.  The clonic phase usually lasts less than a minute.

As you can tell from the description, they are rather horrible.  But now Soren is having lots of quick Tonic (stiffening) seizures that last about 2 seconds.  These are less scary to watch and are over in a flash.  With Tonic-Clonics, Soren passes out for a long time afterwards.  With the Clonics, he's bouncing back quicker and seems less out of sorts.

I only recently did the last adjustment on his meds, so I am trying to be patient.  But this is difficult when it's my child that is suffering through the process.

We have another appointment next Monday so hopefully we'll come up with different mode of action if things are still not going well.

Amy

Social Skills Group

Once a week Soren goes to Social Skills Group.  The purpose of the group as a whole is for these boys to socially interact with each other, take turns, share, and make choices together.

For the past year it's been Soren and two other boys who are a little older than him.  These two boys also have developmental disabilities, but overall are able to communicate much better than Soren.  They can do some sign language, give verbal cues, and are both really good with assistive devices like iPads and DynaVox.  

Soren was the third boy to come to this group.  Because the other two boys knew each other, it took a little bit for Soren to find his groove.  Soren can be a bit of a stinker and pretend to fall asleep when things aren't interesting.  And the other boys made it a point to try and wake him up!  Soon enough Soren stopped playing possum and started participating.

I brought Soren's iPad in so that he could "tell them" his Soren Update by touching the iPad and activate my pre-recorded voice.  From what I've heard, this is one of Soren's favorite activities during SSG.

Now, juggling the needs of 3 disabled boys must be challenging for these two therapists.  These boys can be pretty demanding.  When the other parents and I return to class, I'm constantly impressed with the updates on what they did during their hour together.

Because of Winter Break, Soren had 2 weeks off from his Social Skills Group.  And I think he was really missing it.  3 days before school started again, Soren started getting really cranky.  As much as we tried to do fun stuff, I think he was missing his routine of school and seeing his friends.

Yesterday afternoon I got an email from Soren's teacher saying that Soren had a great day at school.  He was alert and focused.  I was really happy about this, but then feared he'd be exhausted for SSG.  I kept briefing Soren, saying that we were going to go see his friends.  And when I wheeled him in, Soren was bright-eyed and smiling.

And to my surprise, there was a new boy in the group.  This boy had a huge smile and if Soren's in the right mood, he responds really well to this energy (much like all of us).  I worried a bit for the therapists now trying to manage 4 boys, but I figured they'd come get us if there was a problem.

Well, when we came back, those boys were all in a great mood.  Soren smiled and laughed through the entire session.  The therapists noted that it was actually easier having this new boy in the mix.  It's like he balanced the group out.  And Soren took to him, so he's clearly a good egg!

On the way home, Soren chatted away in his "Soren Speak" and though I don't understand a word, I know he had a good time.  Through Soren's visual cues, it was clear that he considers these boys his friends.  He missed them when they were gone and was happy to see them again.  And he got to add another friend to the group which clearly made his day.