I recently completed a chronology of what we have experienced en-route to B’s diagnosis, which I list below. This was actually one of the first blog posts I started back in June, and it was a lot of research to dig through past emails and texts to come up with this list, I only recently finished. It’s been a nagging thing to me to get this done and posted. There is something about it that’s simultaneously validating for how much we’ve been through on this journey so far, and that while it’s exhaustive and therefore pretty personal, I think it can be of help to other families who may be starting out this journey. We’ve been though so much in the last 6 years!
It’s most exhausting to think that I was holding down a full time job while also navigating insurance companies, therapy waitlists, and school meetings. It's as much effort as side hustle, with only recently seeing tiny steps toward anything resembling reward (the definition of side hustle!). There are people who go to work, raise their (NT) kids, and still have time to busy themselves with hobbies. Raising my kids is now my hobby, full time job, and side hustle, rolled into one. Sometimes, that’s what one job takes. And to raise a kid like Bryson, it takes all that, and a village.
My plan is to add to this list overtime to show progress, and I’m hopeful the rate of additions can slow as we get into a rhythm and routine of school and therapy. This lists reminds me that we’ve been through some of the hardest parts, what it takes to get the diagnosis is a feat. The diagnosis means we have documentation in hand to access support services. And not that it will be necessarily get easier, but that we are acclimating to what can be our normal and we can hopefully have minimal distractions from that. Routine and rhythm are part and parcel of Autism, and the less distractions and transitions the more we can operate in our normal as we need too.
OK, here we go:
Chronology of Bryson’s diagnosis
Fall 2014: Heard from B’s CCC teachers B was “different”; (about age 20months)
· delayed compared to peers learning toileting, motor skills (fine grasp, and balance), interacting with others, etc. –but speech was fine
Spring 2015: B is struggling daily at school, high energy, difficult focus
§ Monthly school meetings begin, negotiate therapy needed for him to remain at CCC
May-July 2015: B moves to school plan x2 p/week
Aug-Oct 2015: B tries x5 p/week, with shorter days (8 hrs or less), school plan
· school continues to ask for extra support resources
· insist on referral to KidsConnect
Nov 2015: B moves to x4 p/week school plan (off Wednesdays for rest)
(K starts work PT)
· Warm referral assigned to social worker Danielle Luther
Nov 11: B and K meet with Danielle first time, at home
Dec/Jan 2016: Danielle conducts series (2-3) of classroom observations
Feb 3, 2016: 3 yr well kiddo check in with Dr. Warm, discuss concerns
Feb 12: meeting with Danielle, CCC staff
· Follow up referral with ChildFind (BVSD)
March 21, 2016: Text with Danielle on ChildFind appts
April 2016: Bought home in Golden! (Moved May 8th)
§ Transition B into new home was hard
April 5: Phone call with Dr. Warm re: BCH Ped Rehab referral
April 6: BVSD ChildFind eval
April 26: Referral in to Kaiser for B to access OT at BCH
April 28: Provide BVSD ChildFind eval report to BCH
May 11: 1st JeffCo ChildFind eval
May 17: B eval @ BCH for OT
June 23: Outreach to BCH (based on urging from CCC) on when OT can start
Aug 24: First OT session at BCH with Stefani Ruben
Nov 2: Sensory Processing parents support group- Mondays 11am-1pm
· Start planning for B to attend new school, Stefani recommends Bixby
· Stefani also recommends outreach to JeffCo for retesting
· OT needs to be reauthorized. Kaiser auth good for 20 sessions p/year, only 10 at a time (then progress report). Delay in sessions due to reauthorization requirement.
Nov 4: text/email with Danielle on school recommendations, she has also heard Bixby might be beneficial
Nov 11: Text w/ Danielle JeffCo determined B not eligible for IEP
Nov 17, 2016: Stefani observed B at CCC school
Nov 20: Met with Bixby Admissions and Pre-school Directors- possible start in January
Dec 1: Submitted application to Bixby including all ChildFind and OT report
Dec 7: Bryson visits Bixby- He’s accepted!
Jan 12, 2017: Bixby application revoked
Jan 16, 2017: Stefani recommends ABA- emails possible providers
· Looked into ABA- we would need to pay out of pocket, and wide range/spectrum of service confusing to navigate
Jan 23: Emailed Gifted Development Center
Feb 4: Notice PT work schedule will be eliminated
Feb 15: 20 annual sessions for OT used up, will apply again next year
· (decided not to pay out of pocket in interim)
March 1: researched Brain Balance- not for us
March 2, 2017: Request letters from OT and Ped for accommodated work plan
May 12: Tour Broomfield academy
June 15: Brys trial day at Bixby
July 17: B starts at Bixby
Sept-Nov: a couple meetings with Preschool director Email on challenges with B
Early Nov: B in person meeting with Kaiser social worker
Nov 21: Call with Dr. Warm- follow up on Kaiser social worker (that person did incorrect referral)
Nov 22: I complete behavioral health survey at baseline clinic
Nov 27: Dr. Appt/assessment? B in person visit
Dec 4, 2017: Meet with Bixby directors, notified Bryson is struggling
Dec 7, 2017: Email with Terry Bradley (ref by Catherine Weldon)
Dec 11: Notified by email Dec 22 will be Bryson’s last day at Bixby
Dec 12: Call with Dr. Warm
Dec 13: tour Compass Montissori kindergarten
Dec 19: Tour Mtn Phoenix kindergarten
Dec 21: Bryson admitted to afternoon program at Kyffin Preschool, starting Jan 9
Dec 22: Bryson transitions out of Bixby
Jan 2018: Submit all documentation to register B for Golden Community Center spring break and summer camp
Jan: Request IEP evaluation at Kyffin
Jan 5: Register B at Mitchell
Jan 8: Bryson in person dr appt
Jan 9: Bryson starts at Kyffin
Jan 10: Intake call with BCH OT
Jan 26: 3rd JeffCo ChildFind Assessment
Jan: Submit all documentation to register B for Golden Community Center spring break and summer camp
Feb & March: Eval at Kyffin for IEP
Feb 14: Kaiser Ped behavioral health assessment
Feb 15, 2018: We have a Wesley <3
March 1: Starts speech therapy with Becky Riedo (weekly at Denver office)
March 27: Start Insights Assessments intake
March (Spring break): Emergency room visit for B- will no longer attend GCC for summer program
Aril 10: Eval meeting: determined not eligible for IEP
April: Find new summer program for B: Anderson school- starts beginning of June
May 8: Insights assessment in person for B
May 10: GT testing at Kyffin- KBIT2
May 21: Registered at Anderson for summer
May 29th 2nd in person Insight Assessments
June 6: Receive Autism level diagnosis from Insights
June 7: follow up questions: ADHD, GT testing, medication
June: Interview 3 ABA providers, we have 1 clear favorite
· “DAS (Equiv. to the WPPSI, he is too young for the WISC)
July: 2 Initial assessments by CS Shaina for Intercare Therapies, ABA provider
July 20: Outreach to Mitchell Principle, request for reassessment for IEP
Aug 16: Meet with Monika VanDerStek @Mitchell
End Aug: finish speech therapy, plans to start ABA instead
Sept 4: pre-IEP meeting with Mitchell Team
Sept 9: First day of ABA
Sept 20: IEP eligibility meeting with Mitchell team
· Complete ABAS and CARS-2 assessments
Sept 21: Safety vest agreement for general bus service transportation
Sept 26: Need to regularly provide extra snacks
Sept 27: Emergency call from Mitchell to pickup immediately
Oct: ABA routine underway- gets harder before it gets better!
Oct 1: Bryson stops using regular bus service- K dropoff in AM, Casey Pickup PM
Oct 9: B is eligible for free kindergarten tuition because of IEP status
· (will be reimbursed for Nov & Dec tuition and transportation fees, still paid Aug, Sept, Oct)
Oct 11: ABA CS Shaina observes B in class at Mitchell
Oct 30: Team meeting w/ Shaina for IEP update
Oct 31: BIP (behavioral intervention plan) meeting, plan in place
Nov: ABA gets harder before it gets better!
Nov 2: K changes jobs (apply for change of insurance)
Nov: Applied for DDRC funding
§ School day going better as routine is est according to BIP
Dec 18: IEP update meeting to discuss whether B will change schools
It’s decided by district he can attend Shelton ASD program
Dec 19: Told B about changing schools
He had many questions: “will there be potion time?”
“will snacks be available?”
Dec 20: Meet with Shaina and Conar for ABA data update: he’s making progress!
Dec 21: transition meeting with Shelton team
Dec 22: B’s last day at Mitchell
Jan 2019: Break in ABA due to insurance change and Intercare error to file with new insurance Anthem, lot’s of effort to get reinstated!
Jan 8, 2019: I take B in to visit new classroom before other students start
Jan 9: B’s first day at Shelton,
§ Home pickup transportation provided by district. I ride bus with Brys first day
Jan 2019: Brys transitions well into Shelton program
Jan 22: B celebrated his bday with his new class
Feb 11: resume ABA
Feb 20: first (communicated) major elopement since starting Shelton
March 20: B complains regularly of stomach aches. Doctor’s visit determines chronic constipation. Will take Mirilax daily
March 25: Visit JeffCo School district special ed summer programs open house. Spoke with DDRC and Camp Paha Administrators
March 27: Received financial support for ABA co-pay reimbursement from DDRC
April 15: Enrolled B in Camp Paha
May 2: Parent teacher conference- update on the term for B.
§ He has been more escalated toward end of school year, but otherwise really got into the program.
May 15: ABA progress report: Data looks as B has made progress.
§ Shaina estimates we’ll need to continue ABA until at least Dec 2019
May 23: Last day of semester
June 3: First day start for Camp Paha
June 26: Last day at Camp Paha
July 1: Change insurance to Cigna
July 4th week: Travels to Madison!
July 15: Received 2nd financial support for ABA co-pay reimbursement from DDRC
August 1: New ABA Clinical supervisor assigned: Leigh
Aug 14: First day of 1st grade in Shelton ASD program