Kristen did interviews with WTOP and ABC about MCPS's closure of the Virtual Academy Max has attended for two years. 

MONTGOMERY COUNTY, Md. (7News) — The Lasko family is well-tested when it comes to challenges.
They work tirelessly to give their special needs son, Max, the best life and education possible.
However, they said worry set in back in February when they first learned that his virtual education could be taken away because of upcoming budget cuts.
"Teachers were giving us that feedback that, yes, he's starting to make progress that we weren’t seeing before," said Max's Father Jonathan Lasko. "Having that hope, We don't want to go back. We want to move forward."


Read the full article at https://www.wjla.com/news/local/montgomery-virtual-academy-montgomery-county-public-schools-mcps-maryland-education-special-needs-students-accessibility-learning.

Kristen Lasko’s son Max, who attends school virtually through the program, said the program’s closure came as a surprise. Max, a fourth grader in the school system, has spinal muscular atrophy and requires a ventilator, a wheelchair and a G-tube to carry out everyday tasks.
But because of the MVA program, “Max has gained independence,” Lasko said. “He has been able to submit everything himself. He’s been able to make gains in reading and in mathematics.”

Read the full article at https://wtop.com/montgomery-county/2024/05/i-have-no-idea-what-ill-do-montgomery-co-schools-plans-to-shut-down-virtual-learning-program/

We wanted to share the solution we developed to enable Max to do his elementary school math work. 
(Note/caveat: this solution is more relevant for kids who cannot easily write freely using a pencil or tablet, and for whom controlling a mouse is slower than selecting options on an AAC device.)

After sampling a wide variety of math apps on multiple platforms (thanks to those who responded to my previous Facebook post!), we found that many of them used a grid layout but are optimized for mouse users (e.g. Mod Math, Panther Math, Math Cad, Smart Notebook, ). Max is reasonably adept at navigating with a mouse, but it's definitely slower for him than using arrow keys. This sparked an idea which has turned out to work well for us: a lightly customized set of worksheets in Google Sheets. 

It works like this: his teacher (or paraeducator, or eventually, Max himself) can enter the problem as written in black characters. Then Max would work the problem himself, as shown in blue characters. It gives him an accessible and easily manipulable workspace where he can work out the problem, the way his classmates do with paper and pencil.

Additional benefits:

• layout is familiar, grid-based, and friendly to math
• it is shareable, collaboratively, and already integrated into his school workflow (e.g. no extra/new programs to learn)
• he can control it with his AAC device

If you'd like to see an example of this Google Sheets page, send us an email!

Last spring we changed Max over to a VOCSN, the new multi-function ventilator from Ventec Life Systems which also includes Oxygen concentrator (**but see caveat below**), Cough assist, Suction, and Nebulizer. (That's right, VOCSN is an acronym.)

After eight years of carrying a Trilogy vent, T70 CoughAssist, and Easy Go Vac suction (all x2, since we never leave home without backups), we were ready to consolidate.

It's been pretty great so far...only one minor problem, easily resolvable. (The touchscreen stopped working; a hard reset resolved it, details below.)

A few observations from the transition which may be of interest to other patients considering the VOCSN:

• Max uses PC-SIMV ventilation mode (as on the Trilogy). His transition from Trilogy to VOCSN was seamless...so smooth, in fact, that during the initial trial at clinic in the hospital (when we tried ventilating him on a VOCSN for the first time, and then, when it worked well, tested out the cough and suction features), Max was fully expecting to go home with the VOCSN that same day. ("Awwwww maaaaan," he commented, when we explained that there were more hoops we had to hop through to get him switched over.)
• Our DME at the time (2019) was not able to support a VOCSN on the medical insurance we were under at the time; we changed DMEs to get the VOCSN. There was also a global pandemic and ventilator shortage, so suffice it to say it felt like a huge win when we finally got him changed over in April 2022.
• We were set up with two VOCSNs, one as a "home vent" and the other as a "travel vent." However, when we travel, we will always carry both with us (just like before when we always carried the backups with us -- always be prepared).
• We got a humidifier upgrade as well -- from F&P MR-410 to F&P HC-550). The HC-550 (which is recommended by Ventec for use with the VOCSN) runs a heated tube using two temperature probes. We moved from refilling manually with distilled water to bag water, which is kinda nice.
• The VOCSN has its own custom vent tubes which include a secondary tube to route O2 from the oxygen concentrator plus a special one-way valve to close off the humidifer during cough mode (to avoid blowing water into the tube). The latter is not included in the "travel vent" version of the tubings (which is designed for use with an HME instead of a ventilator).
• The suction is considerably quieter. Like, wow quiet. Like, a long time ago I made a wish list of medical technologies to invent and put "silent suction" on there (because the average portable vacuum suction unit is incredibly loud which can be awkward in certain social settings) and this feels pretty darn close, quiet.
• It is WAAAY easier to administer a cough (which actually means it's WAAAY easier to train caregivers - HUGE benefit!).  Just press one button, and in three seconds the vent tube starts administering cough therapy. Disconnect after however many cycles you like to cough for, suction trach, reconnect, and voila. Nurses being trained to care for Max used to S-T-R-U-G-G-L-E for weeks to master the rhythm of the cough assist + suction + 2x positive insufflations + vent cycle he typically uses, and, to be fair, it did require the caregiver to manager two tubes with EACH hand (vent, cough assist, suction tubing, suction catheter) while syncing up with an oscillating cycle that is happening in 1.5 second intervals...a bit like learning to jump rope The VOCSN drastically simplifies this: just press cough, and then suction at the right time. Easier coughs mean easier to train nurses (or family caregivers).
• I have not noticed any build-up of sputum from using the same tubing for coughs and vent. We have an omniflex on the end and can change it out easily enough if we notice it gets dirty. Occasionally if some mucus goes into the omniflex, we just suction it out with a catheter; no problem.
• Max has shown no issues with breathing on it and reports that he likes the VOCSN: he likes the coughs, the suction is fine, and he has no trouble using the passy muir valve with it.
• It supports multiple presets for cough mode; currently we have a 5-cycle option and a 10-cycle option. You can set it so that the suction comes on automatically when you start the cough.
• Battery life is approximately nine hours: 3 hours internal plus two 3-hour batteries. Buying additional batteries is quite expensive ($690/pair), but between the two vents we have 4 batteries, so up until now we have been using/charging strategically.
• The suction has been strong enough to do the job. We don't have it on full power.
• It runs through an automated pre-check each time you change the tubing (to test that everything is hooked up right and working fine). This is another reason that a vent-dependent patient needs to have a backup or travel vent on hand.
• It runs slightly louder than the Trilogy, mostly just from the steady pitched hum of the internal fan. Occasionally the one-way valve by the humidifer will make a low-pitched squeak or woof sound...I noticed this a couple times at the beginning but haven't heard it in a few days.
• The travel vent mounted beautifully onto the back of Max's Permobile F3. Saved us a lot of work vs figuring out how to mount a Trilogy 100, CoughAssist T70, suction, and humidifier on there, the way we had on his previous power wheelchair.
• The home vent hooks up to a typical suction canister. The travel vent is configured with a custom VOCSN receptacle for suction contents, which is connected to the side of the VOCSN. Like the filters and vent tubes, these are replaced regularly.
• The story of what it took for us to get this done is its own long saga (involving an in-person trial in early 2020, a global pandemic, a national vent shortage, a non-optional change of insurance companies, and a self-elected change of equipment companies). In the end, Anthem BCBS and PromptCare got us there. (Kudos to both.)
• In summer 2022, we took his two VOCSNs for a week at the beach. This unit is a champ. No problems.
• As of fall 2022, we now have the HC150 running inline with the humidifier circuit for the portable/travel vent setup on his power wheelchair.
• Max has never had his VOCSNs break. (He did have two Trilogy failures, so we know what it's like for a vent to break down--scary.) One of them was swapped out when it reached its regular service date.
• The only problems we have encountered with Max's VOCSN are:
  • In spring 2023, there was one time that the touch screen stopped responding. This was scary (as there's no way to access vital functions like cough and suction), but, after either switching him to either the backup VOCSN or AMBU bag momentarily, we reset the vent and the screen started working again. It hasn't happened since then.
  • In spring 2023, we noticed that the VOCSN (a) wouldn't issue a cough when it's only running on the internal battery, and, more annoyingly, (b) instead just shut down mid-function when we tried to do this. Obviously this is un-ideal (and even dangerous) -- if it doesn't have the power to do this, then it should prevent the user from enabling cough mode (and even warn ahead), rather than just shutting off. When this happens, you can turn it back on, and it will resume ventilation. Our workarounds for this is mainly to make sure we keep batteries charged; when we are out and about, instead of leaving the backup vent in the car, now we remove the extra batteries from it and take them with us, to double our time. And, as usual, we try to plug in and charge whenever possible. So...while this was a major surprise the first time it happened (and resulted in a quick AMBU bag session while we swapped vents and debugged what happened), now it's just one more small thing to workaround. But our verdict is that it's still worth it for the convenience of not having to lug as many machines.​
• Many have reported issues with the VOCSN related to the oxygen concentrator function. (The word on the street is, it wears down the life of the unit, and people who use the VOCSN with concentrator function end up having to swap the unit out ever few months.) We have literally never used the O2 concentrator (and likely never will, as we always travel with a spare O2 tank), so the only way we've been affected by this issue is the fact that some DMEs have soured on the VOCSN due to this issue.

The National Scoliosis Center published a blog post on the benefits of customized braces for childhood SMA which features a picture of Max sporting his new Rigo Cheneau brace. Check it out!

The Jewish Federation of Greater Washington highlighted Max's attendance at the Bender JCC Preschool via BEAM telepresence robot as a wonderful example of the JCC's commitment to inclusion. This video they commissioned looks inside the classroom that Max attends, beautifully capturing the relationships between Max, his friends, his teachers, and the entire preschool community.

When Max told us last summer that he wanted an "orchestra" birthday party, we never dreamed that his wish would find its way to Pablo Urbina and the London City Orchestra...or that they would utilize the marvels of modern technology to give Max a personalized, virtual tour of the orchestra as a one-of-a-kind birthday gift!

We were so blown away that we just had to share it with others. Enjoy!

This year Max began receiving Spinraza, the first approved treatment for SMA. The drug is a huge milestone for the SMA community, but it's also the beginning of a new leg in the race for more effective treatments and ultimately a cure. Max needs your support to get there.
​

Carolyn Y. Johnson writes on the ethics of Spinraza for The Washington Post in this article featuring Max:

​Looking for a pick-me-up? Listen to Kristen tell Drew from The Midlife Commute Podcast all about life with Max and SMA!

Kristen was one of a handful of SMA community representatives invited to testify about the burdens of life with SMA before FDA representatives at this week's SMA Patient-Focused Drug Development Meeting.

Meetings like this help show how FDA decision-makers are actively listening to the patient populations affected by their decisions.

Watch her brief testimony by clicking on the video below...or read her testimony in full on the Cure SMA website.