So now we have the results, but what happens next? To the outside person, one would assume that after meeting with a Developmental Pediatrician, Developmental Psychologist, Speech and Language Pathologist, Psychometrician, Registered Nurse, Pediatrician, and the School District, it would all be easy…pretty textbook, right? You would be more wrong than those Europeans that believed the world was flat. You see, all of these people that you pay thousands of dollars to to give you the all-important “diagnosis” only give you treatment RECOMMENDATIONS. Everything else is up to you. If you want to try a treatment that is NOT recommended, you have to research it yourself, find the appropriate therapists yourself, and make the arrangements yourself. Furthermore, if you want to do the treatment they recommend, you have to research it yourself, find the appropriate therapists yourself, and make the arrangements yourself. So what was recommended to us?
1. Sophia was to be enrolled in an Early Intensive Behavioral Intervention (EIBI) Program (through Children’s Hospital…cha-ching for them) at a rate of 30-40 hours per week. (To the rest of the world outside of Children’s Hospital, this is known as Applied Behavioral Analysis, or ABA.) This was to be done in-home, overseen by Children’s Hospital.
2. Private Speech and Occupational Therapy Services. (That is listed on her feedback report. The next item on the list is to have an Occupational Therapy Assessment done. Again, cha-CHING for Children’s.)
3. Rethink Autism web-based program. (It’s $70/month…from us…they led us to believe that it would be completely necessary. It ropes you into a year contract, at least. We can’t get out of it, even saying “we’re broke and can’t pay” won’t get us out of it. We have used it four times in 9 months.)
4. Parent education through the Autism Academy (at Children’s Hospital…wait for it….CHA-CHING).
5. A list of very long, involved text books, all in the $100 range.
Mind you, these recommendations come after a three hour dissection of your child’s testing. My brain was literally turned off. So when we got home from the Feedback Appointment, we actually ordered two of the big, fat, expensive books; signed up for Rethink Autism; and began to look into how we would start this EIBI thing. In my mind, her biggest delays were social (yeah, I guess you could say I was still in a bit of denial), so I had thought school and socializing would help; but the doctors, who definitely know better than we do (right?), said she should be in-home doing this ABA stuff. At this time, I really didn’t know much about ABA Therapy, other than the case studies that Children’s Hospital had provided to us, which sounded absolutely amazing. So back to Rethink Autism…after I signed us up, entered in separate profiles for both of us, I started to watch the skills videos. THIS IS ABA??????
By now, it was time to finish the eligibility meeting with Columbus Public Schools. To recap: there is an Autism Scholarship Program in Ohio. Basically what it is, you declare to the state that your school district is unable or unwilling to meet the needs of your child for a Free and Appropriate Education in the Least Restrictive Environment (these are real things, people…), so you wish to use the Autism Scholarship to pursue other means. It is the money that would go to your school district to cover the expenses of your child (this would be your tax dollars at work, folks). It is $20,000 a year. Once you get this money, you are free to do with it what you want, be it enroll your child into a private Autism academy, a parochial school where you then also hire a private aide to spend the entire school day with your child, an in-home ABA program, home schooling…whatever you want. We were encouraged to do this by Children’s Hospital, in order to start our in-home program. So after MUCH annoyance and headaches between Children’s Hospital and Columbus Public Schools, the school finally finished all the necessary evaluations and tests to determine whether or not Sophia qualified for services in the Special Needs Department. Surprise…she did. So the next step was to get into a school and get an IEP, so she could get started.
We live across the street from an Elementary School that has a Special Needs program in it, but instead, we were sent across town for the Preschool program. The initial date THEY had chosen for the IEP (without consulting us first) didn’t work, so I called to reschedule. We wanted a Friday so we could both be there, but the teacher wasn’t actually going to be at school on a Friday for three weeks, so we scheduled the appointment. It was the Friday before Thanksgiving. Yes…November, 21 months after I first voiced my concerns to a medical professional. We used the three weeks prior to the IEP meeting to tour other private Autism Academies, trying to help us decide if we wanted public school or private academy. We liked all of the schools we toured, but it became rapidly apparent to us that, even with the Autism Scholarship, since we are not on Medicaid, we do not have the entire tuition covered, so we would have to pay out of pocket. Since we also had medical bills and therapist bills coming in weekly, we didn’t have this luxury. So it was going to have to be public school or take the scholarship and do ABA for about three months before we ran out of money…we chose public school.
The IEP Meeting was interesting. It was just us and the teacher, no team. It was already written up, she was basically just reading it to us. It seemed reasonable to us. We needed a few things added, and she wrote them down and added them to the IEP, then she said Sophia would start the afternoon class on the Monday after Thanksgiving. Ok then, so I guess we’ll see you then? So what was in that first IEP?
- Communication: verbal directions containing spatial concepts; non-verbal and verbal turn-taking; establish & maintain eye contact when in conversation; wh-questions; 4-5 word phrases to communicate her wants/needs; label emotions in pictures and others; communicate her emotions with others.
- Gross Motor: sit with stability in upright position on floor/chair & maintain personal space; maintain balance in high kneeling position while performing a gross motor activity; consistently jump with two feet and hit a target 12 inches away; correctly imitate position or movement identified by peer or adult; will walk in line with peers.
- Adaptive Behavior: follow routine classroom/school directions; follow novel classroom/school directions; stay focused on the teacher during teacher-directed activities; participate during small/large group time for 5 minutes; indicate need to use the bathroom (I’ll spare you the very specific language of these goals!); take care of personal needs.
- Fine Motor: use a mature grasp to hold a writing utensil & accurately copy simple pre-writing shapes from model; properly place scissors on her dominant hand and cut on straight, curved, and angular lines; consistently use pincer grasp; independently use utensils for eating.
- Social Skills Training: follow rules while playing simple games; stay focused on her work during structured work time; comply with adult requests first time given; participate during small/large group time for 5 minutes; take 3 turns in a simple cooperative activity with one other child; play near another child for at least 5 minutes.