Alone, Scared, & So Many Questions:
Payton was born September 2015. She was born with hip dysplasia; and was in a spica cast from 5 months old to 8 months old and then wore a brace till 18 months. At her 2 year well check the autism screening had her at 50/50 odds as to whether or not she had autism. To me there were a few signs; but mostly everybody else thought she was just a late talker. Our pediatrician told us to start with AEA, Area Educational Agency, to see if her speech would increase. At the time, he wasn’t concerned with her having autism. We weren’t overly concerned with her social piece, mainly because being in a spica cast meant kids had to approach her to play. She never had to approach them. We knew this was something we’d have to work on in the future but weren’t concerning ourselves with it at that time.
As we began AEA services in December 2017, we initially started with speech but had added behavioral support within about a month. Finally in April of 2018 we got her tested for autism. In June 2018 she was diagnosed with: Receptive Expressive Speech Disorder, Autism Spectrum Disorder, Speech Articulation Disorder, and Delayed Social and Emotional Development. We were then connected with Axis ABA Therapy and Support Services and started with speech in July of 2018. In August of 2018 we added behavioral therapy in addition to speech which was also done at Axis. In September of 2018 she qualified for an IEP, Individual Education Program; and we started Pre-School. At school she has a one-on-one associate that’s with her all day. We already knew she was outgoing; but now we were seeing that she loves learning and is quite the little dare devil. She made great gains her first year.
Taking this journey has be a lonely one. Our family is very supportive, and we’ve got some great friends; but they don’t live this everyday like we do. They just can’t understand or appreciate the stress and fear it has put on our everyday life.
When I was with Payton at her evaluation for autism, I just knew she was going to test positive. My instincts from teaching special needs kids were just too great. In my heart I was praying it wasn’t true. Then the time came. The hour was up; and the Doctor informed me that she was indeed autistic; but on the lower end of the spectrum and considered high functioning. I was devastated. I started crying immediately. As a teacher teaching special needs students this had always been a fear of mine; but how terrible of me to think this way. I was conflicted. I love the students I teach, so having a daughter with autism shouldn’t be making me feel so terrible… but it was.
After our appointment I was looking at our list of diagnoses: Autism Spectrum Disorder, Speech Articulation Disorder, Delayed Social and Emotional Development, and Receptive Expressive Speech Disorder. I was in the car crying again and feeling alone, again. Before testing everyone was telling me that she was just behind on her speech and that she’d be fine. That had left me feeling unsupported; but now that the results were in, I was somehow feeling even less supported and alone.
How was I going to deal with this? I teach special needs kids. I even teach a few with autism; but I have no idea how to care for a 2-year-old with autism. Those other kids were in high school. Where do I start? What do I do? I was overwhelmed. I called up the AEA consultant, and we set up an IEP evaluation. Then I had time to breathe again. I was reviewing the notes I’d taken at the doctor’s office. Ok… I need to set up an IQ evaluation, try to get Medicaid, and get on an ID wavier. Then I needed to get in contact with Axis ABA Therapy and Support Services; but they were full at the time. We qualified for speech and Axis did have an opening for that; so we were in the door. Then Axis had an opening for behavioral therapy; so we were evaluated for that, and we qualified. At this point the only bright light was that insurance was covering all this.
Still feeling alone, I was searching for answers. What can I do? I know there’s more. After our evaluation for IQ testing, I filled out paper work for Medicaid and the ID waiver. Wow! Just wow. No wonder parents give up on this stuff. It was 30 pages of stress followed by another 30 stressful pages with questions I just had to hope I filled it out correctly. Apparently it paid off. We were qualified now for Medicaid; but on a 2-3 year wait list for the ID waiver. Okay great… now what? It seemed like it was one thing after another after another. Finally I was feeling as though everything possible was in place; but I’m continuing to have more and more emotional breakdowns. I think that working through the paperwork and attempting to check off all my boxes gave me purpose; but now I’m done with that and just have time to worry. I’m constantly thinking there’s something I’m missing.
I can come up with strategies all day long with ways to reach my students; but I can’t even communicate with my own daughter. I just want to talk with her. I want to know why she’s crying. I want to sooth her. This guessing game is terrible. Then there’s my 2-year-old who’s missing out on so much. Simple things like riding trikes or bikes on the sidewalk can’t take place; because we’re worried about Payton running into the street. Places we could take our 2-year-old to we weren’t; and it was because Payton couldn’t handle it. Our fear of Payton hurting herself took us to the extreme. The entire house was baby proofed; and we had to put eye hooks on the inside tops of all our exterior doors. It was getting harder again. I’d get an email or phone call about Payton; and I’d lose it. I wasn’t talking to my husband. I knew he was stressed out; and talking about Payton only intensified the stress. I knew I needed to talk to someone; so I did. I went back to my therapist that I’d picked up from some post-partum issues, and she advised me to go back on some meds that really helped out. This helped me to open a dialog with my husband and get us back on the same team. We were now working through it together.