We will be driving my daughter who has severe autism, Talia, to her new home where she will go to school on Wednesday. When my older daughter left for college, I knew I would miss her, but I was so proud to see her move on and be more independent. Now it is time for Talia to move on. Today, I changed the batteries on some baby toys for her to take. She was excited to play with toys that had not worked for some time while I felt sad. I know this is what is best for Talia, how much she needs her education, how I feel so stressed out running her curriculum, maintaining my job, and running the house. Yet it is sad to pack baby toys for Talia's new journey. When my brother left for residential school over 30 years ago, we felt relieved and grateful that he was leaving the hospital after an over five month stay to go back to school. While I also feel relieved and grateful now that Talia is returning to school, my emotions are much more mixed and complicated compared to when my brother left, I think because Talia is leaving from home, unlike my brother leaving from a hospital. Yet the bottom line is Talia's education must come first.
Next Phase: Residential Education with Applied Behavior Analysis for Talia
With great sadness, anguish, and disappointment, my daughter Talia, who has severe autism, will be transferring to a residential placement soon. The first time a residential placement occurred to me was in November while driving home from her dentist visit. The day before Talia was banging and hitting herself in the head. She was then bleeding from her nose and mouth. The next day I took her to the dentist who informed me she broke her frenum and used enough force that she could have fractured her teeth. When I drove home, I thought that if a parent came into my office and told me they had a child who was similar to Talia and was engaging in such dangerous behaviors, I would have advised a residential educational placement for the child’s safety with a consistent applied behavior analysis program. I then thought that I could not treat myself and my child differently than I would advise a parent of a patient. Although I often second guessed myself, wondering if I was doing it for myself or for Talia, maybe doing it because subconsciously I wanted a life and to stop having to watch every nickel and dime while paying for autism school tuition and home therapies, tired of the stress of litigation with the Department of Education, I now realize, a residential applied behavior analysis program is the best for Talia where she can be safe and learn. I will miss her and worry about her not understanding what is going on, that she will not understand I will be visiting often or even if I will see her again. Yet I know I cannot keep her safe all the time at home, and safety must always come first.
Silver Lining to Autism and COVID: reading sight words
As I need to do Talias curriculum while she is at home, I ran verbal imitation among other programs. She would look at the paper with the picture and word and I would say, "Say popcorn" and she would imitate it. I realized she would say some words before I asked her and one day I folded the pictures and she said a few words with the text alone. When tested she knows all the letters and sounds and now I am doing sight words for preferred items, in therapy but also other areas of my home. She has also been riding her bicycle much more, getting faster, and has come from needing constant reinforcement with edibles years ago to not wanting to come home. I also tried a new way of prompting her expressive object ID program, having her tell me the name of the item when asked "whats this?" before finding it on her ipad which has been more effective than just pointing to the correct answers. She is now mastering targets more quickly. This is a difficult situation but these little things make me feel better.
Reading video https://www.facebook.com/ilanaslaff/videos/876250076207835/
My Podcast Discussing Exercise, Mental Health and Autism
Happy Super Mother’s Day from a Mother of a Child with Autism
Governor Cuomo recently questioned why school buildings exist. Although we need social distancing now, this statement reflects a poor understanding of individuals with disabilities and a complete lack of empathy for working mothers who now in addition to being school teachers, physical, occupational and speech therapists, still have to be housekeepers, shop and work jobs.
Since Talia has been out of school, her sleep is more disrupted, and aggression and self-injury have increased. Since school closed, I have lost five pounds, even though I had to cut down on my exercise due to time constraints. After two nights of waking up in the middle of the night with self-injury and bloody noses, aggression, being unable to get back to sleep deprived and completely stressed out, I had my IEP meeting.
I told the district representative that Talia had been awake in the middle of the night two days in a row and all about her bloody noses, risks for traumatic brain injury, how she lacerated her frenum and almost broke her teeth, why I felt she needed a residential educational placement, she literally yelled and screamed, although I never raised my voice once, used any foul language or engaged in personal attacks. I was so upset after the meeting, it was hard to focus doing curriculum with Talia, although I tried my best. That night, despite my sleep deprivation, and Talia actually sleeping, I was up at 430 in the morning. While I understand the Committee on Special Education (CSE) and I may disagree on services, my decision to place Talia in a residential school was very agonizing, difficult and painful, and at least government employees can behave civilly, maybe even offer a statement of empathy. Two days ago, the same woman from the CSE emailed me, and just seeing her name I felt like jumping out of my skin, and after that I was sleeping off and on the whole night, one of the nights Talia slept well.
Yet I have to say, I am privileged. I have an education and some financial resources, so I can advocate for my child. I also have a husband who helps me with Talia during the night, runs a few programs, and cooks once in a while. He cooked dinner after my IEP meeting. Yet, if schools were to remain closed, many mothers will not be able to return to work. Sometimes, I find it very hard to focus on the job. I have a sitter for Talia when I am working but she can’t always manage behaviors by herself and I have to interrupt my sessions. It is very difficult and perhaps unrealistic to serve my patients well after my daughter just attacked me, especially after a night of disrupted sleep.
I am trying to be an unrealistic supermom just like many other moms out there, hopefully not getting sick in the process.