The Trileptal wasn’t working. The Dr. said to give it 6 weeks. Easy to say, when he wasn’t living it. I sent an email to Elise begging for a therapist recommendation – again. I copied Nomi and detailed a violent and scary meltdown that had lasted six hours. Mickey pulled the entire top bunk of a solid wood bunk bed off – separating it from the built in stair case and dresser. His room was destroyed – linens ripped, toys destroyed, the bed splintered. He was 6 years old and in those moments was strong as an ox. He only weighed about 50 lbs, so I was shocked. I had physically restrained him to finally calm him, but he would only ramp back up when I released him. This was the longest, but not the worst of the meltdowns.
I just wanted to find some help. A leading Autism Center came and evaluated him for their behavior program, which he qualified for, but was wait listed. The wait list was estimated at 12 months. I detailed all of this to Elise in a 1 page email. I received response three days later saying she would call around and see if she could get us IFI (Intensive Family Intervention) services. She called me the next day with the number of a therapy group one town over.. They did not do IFI service, but they did set us up with an individual counselor.
On 11/3/11, Elise contacted us about our next home visit, but never even asked how things were. I responded with a date and a list of the challenges at school. At this point, I was most frustrated by the lack of help. This case worker had told me that there was nothing “wrong” with this child except a little hyperactivity. We were becoming prisoners in our home. My daughter and I were being terrorized by these rages. The home was unsafe for her and me. We couldn’t go to the grocery store. This was not a life, and I knew it.
Between rages, Mickey wouldn’t leave my side. He had to be touching the adult nearest him – stroking an arm, holding a hand, snuggled up next to me. Those moments were the hardest – I couldn’t reconcile this child with the one that would scream things like “I want to cut you in the face” and kick me with all his might.
The same day I spent 30 minutes on the phone with Mrs. P., the vice principal of his school discussing behavior issues on the school bus and at the school. Mickey refused to remain seated, was distracting the driver when she was driving and letting off or picking up kids. This was the first of several days trying to come up with a solution.
Mrs. Z also emailed me that day and detailed his progress. She did say that he called me Mommy for the first time while relating a story during social skills class. She expressed that he would also only sit right next to her and lost it when she had to help another student.
Bus situation continues to escalate. Detailed out in a note to Mrs. C, the head of special education at his school. Text received from the driver on 10/28 that he was being disruptive and unsafe. We then had a conference call with his team to discuss behavior. 11/3 phone call with Mrs. P. after she had to board the bus to deal with a refusal to stay seated. 11/4, spoke with Lisa, the bus driver. Mickey is danger on the bus and behavior is esclating. Things tried:
Sitting Mickey behind the driver – he played with her hair, stood up, threw her hair in her eyes while driving
Sitting Mickey diagonally from her – Yelling her name, standing next to her and blocking kids from getting on or off the bus
Sitting with a classmate – stepped on the child and laid across the child and then pushed him to the corner of the seat.
The other children are complaining and Mrs. P rode the bus with him three days in a row after he refused to comply.
Mrs. C contacted transportation to see about having MIckey placed on a special needs bus. That was set to begin after Thanksgiving break. In the meantime either his teacher or his parapro agreed to ride the bus in the mornings and the afternoons. I could have driven him, as I was only working part time on maternity leave, but after Thanksgiving I would have to be full time and Mickey would be riding the bus to after school care at Nikki’s.
This was really the start of what would be amazing efforts by his school. They went so far above and beyond for Mickey, even though we would ultimately find that they were not equipped to deal with his level of needs.