CHATTER MATTERS

We as a family attended a speech device camp last week called Chatter Matters!

What an amazing experience!

Click HERE for camp information

The camp staff was incredible: 5-6 speech pathologists, 3 of them experts in AAC devices, and then around 20 speech pathology students.  All of these people plus the organizers of the event were available to help and work with our kiddos and us parents!  Plus the camp brought in representatives from the various speech device companies to offer individual support for us and devices!

Our experience with getting a speech device is this:

1. We first applied for the device in Fall 2018. Jonah was eight years old.  Prior to this, despite Jonah having significant speech delays, we had no knowledge a device could even be a possibility for Jonah.  Sometimes I wonder the "what ifs" if we had started Jonah on a device at an earlier age.  

NOTE: I always suffer from parent guilt about not knowing enough, doing enough, or pushing enough. 

However, we were using communication boards with him from age 3 which is basically the non-tech version of a speech device.  And given Jonah's mischievous and impulsive personality, eight years old probably was the the time maturity-wise to bring this piece of technology into his life.

2. We waited a LONG time for insurance to approve the device for Jonah.

3. Even though the device is officially prescribed for Jonah, our intent is to also use it for Ben.  Could we probably apply for one for Ben also?  Probably, but at this point we don't want to go through that involved process.

4.  We finally received the device the 2nd week of March 2020.  Please note that date: because COVID shut down the school and the world by the 3rd week of March 2020.  This meant we had no support from the company to learn the device and how to use it.  We also had no opportunity with school because those doors were also literally closed.  

Then for the start of the 2020-21 school year, Jonah got sick with his kidney issues.  Between Jonah being sick and us trying to keep both boys safe from COVID, the boys were virtual school from Sept 2020 to Feb 2021.  When they did finally return to in person, everyone was in catch-up/getting adjusted back to in-person mode so the speech device was not the primary concern on any of our minds.  So all this to say that since we got the device, I have just been bumbling along mostly on my own learning how to use the device and how to implement it into our boys' lives.

5. Sometime in the fall of 2021, I was very frustrated with the device.  I felt like I didn't know what I was doing which meant I was also confused about what the device was suppose to be doing for the boys.  On a whim, I googled something like "speech device camps or seminars" and up came a Google entry for "Chatter Matters camp".  I opened it expecting it would be some camp in another part of the country.  To my great surprise and excitement, this camp is at the University of Wisconsin Whitewater- just less than 2 hours away from our home!!!!  I decided to apply for both boys to attend, and we got accepted!  And our long-term care waiver covered the cost of the camp!

So that is the story of how we came about attending the camp.

Here are some of the fun activities the boys got to do while at camp: golf cart rides, painting, water games, golf cart rides, bowling, video games, air hockey, golf cart rides, wheelchair basketball, dance party, golf cart rides, talent show, and golf cart rides.  Can you pick up on the favorite activity?

The schedule at camp was that in the morning the boys would do fun learning activities using their devices while we attended classes and seminars for parents.  In the afternoon, there were family fun activities and then another seminar for the parents.  Then in the evening there was a big event like bowling, dance party or talent show.

Here are some of the fun activities the boys got to do while at camp: golf cart rides, painting, outdoor/water games, golf cart rides, bowling, video games, air hockey, golf cart rides, wheelchair basketball, dance party, golf cart rides, talent show, and golf cart rides.  Can you pick up on the favorite activity?

Here is what the camp taught us:

 Things we learned

 1. Boys are at the point where the speech device should be used as an augmentation device

(clarifying what they are saying when someone can't understand them).

Click HERE for power point explaining the purpose/use of speech device

 2. General/pre-programmed words/word lists are probably the best route to take because it is/will be too cumbersome to keep up with entering specific school lessons/current situations on the device. 

 3. Going along with #1 about device being used to clarify speech, if the boys can say a word clearly (ie. more, thank you, hello etc), there is no need to make them have the device say that word also. 

 4. Obviously verbal speech is the easiest and most efficient form to communicate.  This means the boys will always want to use that option first and foremost, and this is ok.  But the goal is for the boys to understand that the device is there as an additional communication tool just like sign language/gesturing or writing down their thoughts is an option for them.

 5. Because verbal speech is the easiest and most efficient, use of the device-even with practice/training- will probably never feel fluid and completely natural.  But this is ok.  The "unnaturalness" of the device hopefully outweighs the sadness of not being understood or noticed.

 Things we would like to see for use of device in everyday life:

 1. Conversation Partner: "I'm sorry I didn't understand what you just said.  Could you get your device to help me understand?" AND/OR

2. Boys access device when they are not being understood.

 How do we get to that point?

 1. Model device use wherever we can, even for the simple words just to emphasize the point that device can speak for a person.

 2. Set up situations at home/school where even if we know what the boys are saying, we say "I'm sorry I didn't understand etc" and then help them use device to clarify what they were saying.  By using a situation where we know what they are saying but we pretend we don't, we can be accurate in helping them search for the clarifying word.

 3. After a successful phase of set up situations at home/school, then try set up situations out in the community where the environment will be more variable but the person they are speaking to will be a "plant".

 4. Hopefully, eventually, because boys will have their devices accessible to them, then when someone can't understand them, either that person will request clarification by the device or the boys will do this on their own initiation.

 Things needed for the above training

 1. Constant use/access to the device at home/school and eventually out in the community

 2. Peer training?

 3. Staff training?

 4. Family Training

 5. More inclusion of the speech device in the IEP?

This is one of FOUR camp helpers 

Jonah proposed to during the week :)

This book was given to each camper.  It is a very neat book because it comes with a simple AAC device that includes basic words which could be used independent of the book.  The book then shows a child how to use an AAC device.  Highly recommend it for speech therapists or families just starting with a device.

Click HERE for Amazon link to book

Click HERE for Chatter Matters Video

THAT’S A WRAP!

 Stephen graduated from Carleton College yesterday!

Super proud and excited for him and his next adventures!

Lydia had to work so she couldn’t join us for the celebration 😕

PARTICIPATING

5th grade attended the "Stomp" performance.

Jonah was scared to sit in his balcony seat so their aide let him find his safe spot on the aisle steps.  

Sometimes participating means adapting, 

but that's ok!

Ben handled the "Stomp"performance like a pro.  Since the boys' main friends at school are a group of girls, Ben is giving his "I'm quite the guy having all these girls around me" look.  

Sometimes participating is just plan fun!

The school staff made a point of having the boys each lunch with their peers.

It's so neat to see them just be part of the group.

Sometimes participating just comes naturally!

PS: These photos were in the school yearbook so I don't feel uncomfortable sharing them on this blog.

Jonah and Ben's homeroom class voted Jonah as the MVP of their group for this school year.  Jonah was so proud to go up and receive his reward.  We are so proud of him, and we are so happy the kids in their class appreciate and recognize the boys as valuable members of their class.

Sometimes participating can be rewarding!

Thank you to all the teachers and aides at school who work so hard to make our boys the best they can be. 

These boys aren't just participating, they are participating in a MEANINGFUL way!  

And that's a wrap- 

5th grade is done, and 6th grade is our next stop. 

Summer plans include summer school, school with mom, speech device camp for 4 days, swimming, baseball, and camping! 

 

PUZZLE STARTS WITH "PEE"

 

I hope someone gets my urology humor in the title...

Today was Jonah's 6 month urology check up.  

His last kidney/bladder ultrasound was in December 2021.  At that time, the left kidney was slowing decreasing in size.  The doctor was quite hopeful that if we waited for 6 months, we would see more decrease in that left kidney size.

Unfortunately, that is not what we saw in today's ultrasound.

Left kidney was 13.9 cm in Dec 2021.  Today it was 15.6 cm.  At it's largest back in Aug 2020 when all this trouble started, Jonah's left kidney was 17.3 cm.

Today the right kidney was also slightly larger from Dec 2021, 9.6 from 9.4.  But the more concerning thing was the doctor could see some slight dialation in the right kidney which had been normal in December.

Jonah's bladder was also very distended.  Normally someone Jonah's weight would be able to hold about 250 ccs in his bladder.  Jonah's bladder today had over 500 ccs of urine.  

Once again, Jonah is presenting a puzzle to the urologist.

What he thinks is happening is that Jonah doesn't adequately empty his bladder.  This is happening because of one or both of these reasons:

1. Jonah doesn't know, doesn't try hard enough, or loses focuses and doesn't pee completely when he goes to the bathroom.

AND/OR

2. When a bladder is stretched out or distended, it can start to not empty efficiently.  So Jonah may be doing things correctly, but his bladder may not be letting the urine out the way it should be because of being so big and loose.

Next thing, because Jonah is not adequately emptying his bladder, this causes pressure to rest against the ureter openings (right and left) up to the kidneys which is causing the kidneys to not be able to adequately drain down to the bladder.  Jonah's left kidney is more susceptible to this pressure blockage because of that ureter is the one that needed to be reconnected when Jonah was 12 months old due to a congenital defect.  There may be scar tissue from that surgery that is making this side "thicker" and more easily blocked.  

If this were another child that the doctor was seeing this in today, he would probably recommend immediate surgery to go in and try to poke through and stretch that ureter to bladder connection.  He would also insert a temporary stent until things could drain and get back to normal size.  A suprapubic catheter might also be another option to add to the solution.

However, Jonah doesn't handle stents well.  He is very sensitive to how it feels and tends to hold his urine even more when he has a stent placed.  Both at 12 months old and then back in Fall 2020, he had several severe kidney infections because of holding urine because of the stent.  

Jonah also had a very hard time weaning off the suprapubic catheter.  What should have been a 2-4 week placement back in September 2020 ended up being 9 months!

So the doctor would really like to avoid a stent or catheter.

For now, he would like to have us double void Jonah every 2 hours.  This means have him go, and then a few minutes later have him go again.  We had been doing double voiding morning, noon, and bedtime.  Now we have to do it every bathroom time.  

This sounds a lot easier than it actually is.  Jonah gets very defiant when you ask him to go again.  We are opening ourselves up to many power struggles for the next two months.  But if a "simple" bathroom technique can prevent surgery, we will do the best we can!

Another ultrasound on 8-8-22.  If things are improved, then we are probably looking at long-term double voiding and long-term pull ups since there is on way we can ask him to try and keep underwear dry- that would be way too confusing for him when we are also needing him to pee!

If things are the same or worse, then it looks like some kind of surgical intervention is in the picture.

I would think at some point if things don't improve, another renal function test will have to be done because the doctor said he is concerned that this severe dialation on the left kidney will start to decrease it's function.

So as is typical for Jonah, he's not typical.  He doesn't follow the textbook description or the normal trajectory of anything.  Hence the reason for the puzzle joke in the title.  However, nothing about today seemed very funny except the fact that Jonah is an awfully cute and sweet little fellow.  And the good news he is feeling good, no kidney infections despite this severe dialation.  Probably the daily antibiotic (yes, he's been on a daily antibiotic since November 2021) is helping him with that.

GROWTH UPDATE

 

This spring brought 6 month check ups for both boys with endocrinology (thyroid).  

Jonah's dose of levothyroxine stayed the same, but Ben's dose had to be increased.

Here are some interesting growth stats for the boys.

Jonah (DOB 9-14-10)

 October 2021

Weight: 62 lbs

Height: 4'3.38"

April 2022

Weight: 71 lb 6.9 oz

Height: 4'4.64"

Ben (DOB 6-21-10)

November 2021

Weight: 64 lbs

Height: 4'5.15"

May 2022

Weight: 70 lbs 1.7 oz

Height: 4'6.51"

So both boys gained 6-10 lbs in the past 6 months.

  

This is the first time that Jonah has weighed more than Ben!

Doctor was not concerned about weight gain at this point.  However, weight is something we will have to closely monitor because individuals with Down syndrome can have problems with being overweight which puts them at higher risk for other conditions like diabetes etc.

If you look at the boys the percentiles though, they are still pretty "little" compared to their typically developing peers.  And compared to other DS kiddos, Jonah is close to average weight and height.  Ben is actually taller and skinnier compared to other kids with DS.  

Jonah

Weight: 17% typical, 29% Down syndrome

Height: 3.5% typical, 41% Down syndrome

Ben

Weight: 10% typical, 20% Down syndrome

Height: 8% typical, 80% Down syndrome

Interesting...

MEMORIAL DAY 2022

 

CROSSED WIRES and OTHER SUCH THINGS

 

Boys are both posing some challenging issues to us as parents as of late:

JONAH

A year ago, we decided to share the boys' adoption stories with them.  In very simple terms, we explained about their birth parents, and why and how they were adopted and brought into our family.  We made a very nice book that is available for them to look at whenever they want to.  

From the get-go, Jonah was more interested in both of their stories.  Ben listened to their stories but never seemed to care very much one way or the other.

As of late, Jonah has a few things mixed up about these adoption stories, especially his own.

1. He thinks his birth dad and our dog Tucker's birth dad live together.  Besides this not being true, he is equating us adopting Tucker as a 9 month old pup and us adopting him as a baby as being on the same level of significance.  Yes, we love our dog, but these adoptions are not on the same level by any means.

2. At various events lately, he is asking if his birth mom or dad are at the event.  He is also trying to talk about his birth mom and dad to random people.  To me, this is showing me that he is thinking about what his adoption means and trying to make sense of it all.  

3. Our oldest daughter has recently started dating a young man.  Since we told Jonah about this relationship, he has started calling his sister and this boyfriend his birth mom and dad.  This mix-up has me more baffled.  He might be taking the aspect of two people falling in love and getting married and having a baby (which is our starting point for the birds&bees talk with the boys) and combining it with the aspect of his adoption story where we explained that his birth mom was not able to care for him because she was too young.  I'm not sure...it's hard to get into the mind of Jonah...  The other possibility is that in Jonah's mind, Abigail's boyfriend might look like his birth dad.  In any case, we are trying to emphasize to him that Abigail is his sister, not his birth mom.  

When I hear him communicating these misunderstandings to us, my heart breaks and my mind frets if we made a mistake by telling him his adoption story.  You can read in this previous post about our reasoning for doing so.  We had valid reasons, but I do worry that this was just too much information for him.  I hope we aren't stressing him out or causing him to be concerned about who is he and where he belongs.  

Click HERE for post about boys' adoption stories

BEN

Ben has been having some behavior issues lately after having a relatively uneventful long stretch of behavior.  The past few weeks he has become much more controlling and defiant, particularly with me.  

The boys recently got a new classmate who has some behavior issues, and I noticed the change in Ben the same week that new student arrived.  

I think what is going on is Ben is trying to figure out the new dynamic and pecking order in his classroom.  I think to compensate for being in unknown territory during the school hours, he is coming home and making sure we know he is in control here at the house.  And since I am his primary caregiver, he is focusing on driving this point home with me in particular.  

That is my theory.  There obviously could be a whole other issue as the cause or other issues along with this one.  It's hard to know when you can't sit down with your child and ask, "Hey, what's going on with you?  What's up?  What is upsetting you?"  Ben can't communicate to us on the deep of a level, so all I can do is guess.

What I think I need to work on is how to parent with Ben by giving him co-control.  Even writing this sentence causes me to catch my breath.  It sounds like I am giving into soft parenting.  But what I mean is I have to give Ben more choices instead of telling him what to do and how to do it.  

Ben, either because of his traumatic past or because of his personality type or because of his DS or because of all three of these components, needs to have control.  I have worked for 6 years to try to help him let go of this control and just be a kid.  Sometimes I have success, but nothing has ever truly "stuck" in a permanent way.  

So my epiphany this morning is how to parent Ben by giving him choices so that he feels that he has some but not complete ownership in a situation.  Ultimately I am still in control as the parent because I will determine what he chooses from.  But from Ben's point of view, he is able to have voice in how he will act.  

For instance, Ben often acts rude or inappropriately in social situations.  I often try to help this from happening by going over what it means to be nice and act appropriately.  Then I tell Ben that he needs to be nice or there will be a particular consequence (ie. no video game that night).  Sometimes this works and Ben makes good choices, sometimes he doesn't make good choices.  He faces the consequences, but when another social situation comes up, we have to go thru the same hoops, with a 50/50 chance of success.  

I'm thinking the piece I need to add to the above scenario is offering Ben a choice of how he will act nice and appropriate.  Like for instance, if we are going to visit by Grandma and Grandpa, instead of giving the broad direction of be nice to Grandma and Grandpa, I should specify this:  "Ben, we are going by Grandma and Grandpa.  I want you to have nice conversation while we are there.  Would you like to talk to Grandma or Grandpa? "   Let's say he chooses Grandpa.  Then I would prompt him a little bit more: "Would you like to ask Grandpa question A or question B?"  And that we would be the extent of our parental expectation for the situation: Ben talking nicely to Grandpa and asking him one question.  Obviously, we would work to expand our expectations, but I think I need to start with basics.

Just an idea that I'm pondering after dealing with a very frustrating parenting moment at school drop off this morning.  I think God used that moment to sort of hit me over the head that what I am doing isn't working for Ben or Me-  Time to make some changes at how to help Ben be the best he can be.

BOTH BOYS

As we think about what grade level to place the boys in Sunday School next fall, the question needs to be answered:  Do the boys go with kiddos who are at their biological age (11-12/5th-6th grade) or cognitive age (5k-1st grade)?  

I checked with the Down Syndrome Association of WI, and their response was that it is best for the boys to be in the environment where they will learn the best.  This means their cognitive age.  

If this means having to do some peer/parent education about DS awareness, then that is what I will do.  Of course, there might be a point where the boys feel too big to be hanging out with littler kids.  If that happens, then I will have to deal how to adapt the material being used at the biological age level to something the boys can handle.  And if the younger kids and/or their parents just feel too uncomfortable with these older boys, then I will also have to go back to the drawing board.  But for now, we are going to place the boys in the 5K Sunday School class rather than the 6th grade class this fall.