Susan Heldoorn – Women’s History Month 2021

I graduated from UCLA with a BA in English.  My husband John and I had no experience with anyone with a disability prior to our son Dan’s diagnosis.  Because Dan was a second child, I knew he was not a “typical” child very early.  I reported my concerns about Dan’s lack of development to my pediatrician when Dan was 9 months old and continuously after that until he was 2.  The Dr. said that there was nothing available and nobody to send us to.  He was finally diagnosed at 2-years 3 months, in Oct. 1980 by a renowned Developmental Specialist at UCLA.  He told me to institutionalize Dan (and gave me the name of 2 places to visit) because he said Dan would never walk, talk or feed/dress himself, etc.  He told me he was Autistic and severely mentally retarded.  I asked him for OPTIONS because I refused to believe him.  He told us about Regional Center.  The thing I remember vividly about that day is that the darling (but problematic) little boy I put in the car seat that morning was not the same child that I put into the car seat to take home.  That little boy was gone and it felt like he had died.  All the hopes, plans, dreams, and expectations for that little boy died that day.  John and I did go through all the stages of mourning and blaming each other’s crazy families.  But, when I was young, I never shied away from a challenge, so I made all the calls (no computers or cell phones in those days) and in a matter of a couple of months, Dan was a Regional Center Client and enrolled in a Therapeutic Nursery School program and in Speech Therapy.  We did hours of work every day with Dan to teach him colors, numbers, words, shapes, and real-life skills.  He was going to be the best little kid with disabilities in the world!

Things went along fairly well in our little world of handicapped programs and LAUSD Special Education Centers until 1985, when Jeff, Dan’s older brother, was diagnosed with a Brain Stem Glioma.  It was a non-malignant tumor, but terminal because of its location.  Jeff passed away in 1986, one month away from his 10^th birthday.  We had already met Lori & Scott through a recreational Saturday Program.  Because of their help, Dan was able to remain at home and didn’t have to go into placement during Jeff’s illness.  After Jeff passed away, everyone in the family was in turmoil as we tried to navigate our way through such an enormous loss.  It was painfully clear that any exposure Dan had to “typical” children were gone when we lost Jeff.  Losing Jeff was extremely difficult on Dan because we could not prepare him for it, nor could we explain it to him afterward.  His behavior was completely out of control.

The push toward inclusion and integration for Dan began in earnest with the loss of his brother and when I went to conferences (urged by Lori & Scott), visited integrated classrooms in other districts (with Scott), and then became a substitute teacher for an almost fully inclusive school district, (which was way ahead of its time).   I worked 120 days a year and most of my assignments were in Special Ed.  I saw inclusion working and with guidance and my determination, we pushed for inclusion for Dan at every IEP.  And every single person at the table thought we were delusional.  After dozens of phone calls, I was referred to a Secondary Special Education Center.  I visited.  The staff would not even CONSIDER Dan being in any other classroom than an Autism class, because, at that time, the label of Autism slammed every other educational door shut.  So, I decided (with some nudging from Scott & Lori) that if I was going to have to fight for what we wanted for Dan at a Special Ed Center, that I might as well go for broke and push for him to go to an integrated campus.  It was unheard of that someone like Dan could be placed on an integrated site in LAUSD.  I found one Middle School with a Multiply Handicapped (MH) classroom that would take him.  And even though he had Transition Goals, no one could tell me who would implement them.  So, WE did.  Before he attended, we took rolls of pictures and made videos of him on campus during his pre-semester visit.  He learned to carry a wallet, wear a watch and tell time.  He was pretty much the first student with the diagnosis of “severe” Autism to actually attend non-special ed. Center in the San Fernando Valley.

While Dan had attended a segregated “Special Ed Center” throughout elementary school he had acquired only a few words, although he could make sounds to imitate practically anything, and LOVED music.  After a semester on the integrated Middle School Campus, Dan’s vocabulary rose to over 300 words, including some choice cuss words his typical peers taught him, much to his grandma’s dismay!  Dan received “C’s” in his SPED classes but earned an “A” in his general ed music class where he thrived!

The transition to High School was just as much of a challenge.  The Inclusion Specialist didn’t think any of the Regular Ed High Schools were appropriate for him after she had spent 20 minutes with Dan.  We told her that her opinion was solely based on the word Autism because she couldn’t possibly know who he was in just 20 minutes.  I asked them all to tell me what he COULD do, not what he COULDN’T.  And I challenged them to give him a chance to fail before they already had decided he would.  Finally, I had to pull out the big guns and threaten to sue the district.  Our lawyer was a well-known advocate for people like Dan.  I had found three High Schools with Community Based Instruction classes on them.  Two were still in the Dark Ages about Autism.  He ended up in a classroom that was practically just a babysitting situation, BUT he got to take a few General Ed. Classes and he thrived in them.  When Dan was 19, John and I believed enough in Dan and Avenues SLS that he moved into his own apartment (with a paid roommate with who he split the rent & utilities).  Dan moved to the SCV and transferred school districts to the Hart Unified High School District.  We were able to advocate for Dan to be one of the first students with autism receiving transition services with a home-room class based on the campus of College of the Canyons, where he thrived (taking classes at COC and gaining valuable volunteer & paid work experiences on and off-campus).  Dan could never have succeeded at COC if he hadn’t had the experiences on general education Jr. High and High School Campuses where he was integrated with typical students his age.