I have been exhausted; too tired to think or type down any thoughts that may have sifted through the sleepiness.
On Tuesday Jonah’s school had a half day, so I had to pick him up at 11:30am. I dreaded it. When I arrived he’d already had attack incidents at school but I’d just bought that kick-ass harness contraption so I knew he’d be safe in the car. It is a sickening, saddening, surreal feeling to be afraid to let your child out of his safety harness for fear he will attack you. But I was too chicken to have Jonah in the house with me alone. So I literally drove him around until M met me at 3pm to take him to a doctor appointment I’d made for him (almost all the respite/services/ placements/ programs I’m applying for require a current physical).
After I picked him up from school, at Jonah’s request, we headed to Voorheesville to see the trains. Here we had the first real test of Jonah’s new safety harness, when for no reason he flipped out and tried to launch himself at me.
It is a weird thing to reach for your camera at a time like this, but I feel so journalistic now that it’s a natural instinct. You can see that although the harness kept his torso back, his legs were free to kick. Of course I’d thought to remove his shoes, but bare bony ankles hurt too. After I took the picture I got the hell out of the car and watched, shaking, as he BAM BAM BAM-ed his foot against the console armrest. I quit smoking almost 10 years ago but it was a smoke-a-cigarette-and-get-your-shit-together moment if there ever was one.
I’ll be looking into a leg/foot restraint next. After he kicked himself out of energy, by some miracle of miracles, we saw four trains – two at the same time – and Jonah was once again happy.
Then we visited a drive-thru and went up for a ride through Thatcher Park. Jonah was calm but I knew it could change at any time, for any reason, and the whole time I’m thinking this is ridiculous. I can’t live like this, afraid to let my child out of the car until I have help.
Finally M and I took Jonah to the doctor and he was pretty good, though I was kind of a wreck. After the physical and the shot Jonah needed (which didn’t elicit a freak-out attack, like you’d think it would), M took Jonah to the car and I stayed behind to talk to the doc. Doc came in, pulled a stool up to me, and said “I’m going to say something that’s going to sound horrible, and I’m sorry. But I think it’s time to investigate respite placement for Jonah.” He explained that I am not going to be able to handle this, emotionally or physically, and that it wasn’t safe for Jonah or for me, or for my mental health. So I nodded numbly and got some information from him about who I’d need to talk to, and then I left. Within hours I had a second opinion from my favorite doctor on the planet, and he told me the same thing.
So I considered it. I thought about it and I cried over it and I had nightmares of it. On Wednesday, when M could not be with me, my cousin Brian came down to stay with me and Jonah (and he got to witness a mid-level attack on me, too fast for him to stop, which mangled my glasses yet again and gave me that bonus good ol’ “nose smashed into the brain” sensation) until M could come back to help. I just have to keep someone with me, all the time. All the time.
I keep someone with me
and I remind myself to breathe
and I have crying jags that won’t stop
and I have moments of power and strength
and I keep hoping, and feeling the hope crushed, and hoping again.
and it’s breaking me down, all of this, and chip by crack by piece I have come to the place I am today, where I am investigating temporary overnight respite homes for Jonah….to keep him safe, to keep me safe, to keep me from losing my mind altogether and being of no use to either of us.
I do not have help this weekend. I had to drive Jonah to school this morning (because I’d forgotten his harness at after-school program the day before and they won’t let him ride the bus without it) and then I realized halfway there I’d also forgotten his book bag with his lunch in it – and then on the way he launched another few attacks at me — kicking, screaming, thrashing — and by the time I got to the school, my nerves were so frazzled that I actually called the school on my cell from the front driveway and cried to them to please send someone out for my son and a social worker out for me.
They came and collected Jonah, and in the social worker’s office I asked her tearfully to please help me find some kind of respite care before the weekend. Please. As unimaginable as it is going to be to walk away from a home where my son will be for however long he needs to be there, I need this. Now. Please. So she started leaving messages, and so did I. My father helped me a lot today; we picked Jonah up from school and took him back to the doc for the results of his tine test and my dad stayed with me until M could come back. I heard back from the social worker and someone from CPS but only to say they were trying.
I am still waiting. I have one more day until the weekend; I have to believe they will help me tomorrow.
I’ll call and badger and beg if I have to…
Or I don’t know if I am going to make it.
The Never Normal 
wish there was more i could offer than a few cyber hugs. take care of you. you are doing the best you know how to do now. *gentle hugs*
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This describes the choices facing a parent of a child with severe behavior issues. I did not say answers. However there is an answer here. The concept of “circle of friends.” Basically all the people who interact in a positive way in support of an individual with autism form the circle of friends. The circle of friends is the Office for People with Developmental Disabilities solution to the extreme shortage of services supplied by the not for profit agencies such as Wildwood, ARC and Center for Disability Services. The family identifies the friends and gets them together periodically to decide who is going to do what and when. Goals and objectives are shared. Ideas are shared. Skills are taught. Some families make the meetings parties so this is not a chore but a part of life. While this seems to be unreliable, Mom is already getting more reliable help from her circle of friends than many other parents get from the not for profit agencies.
For some out of home placements the only solutions are out of state placements such as Woods in Pennsylvania where several individuals with autism recently died and were beaten up. Their home counties are trying to bring the remaining county residents back back. So parents have to be careful and informed in making such placements.
Child Protective Services traditionally relied on the Persons in Need of Supervision PINS process to remove children with behavior issues to youth facilities where they received little if any therapies. Counties are now telling CPS that these placements are too expensive to make. Foster care parents are another choice but there is no guarantee they have the necessary training or skills. Again counties are finding these placements too expensive.
One solution is to seek out home health care aids from the county. Albany County’s Point of Contact program hooks caregivers up with sources of help and is getting a good reputation as an alternative to out of home care.
The key to finding care is often having medicaid coverage but there is a waiting list. With medicaid you can hire help and services from agencies in the health care system such as The Eddy which are outside the OPWDD system. You can also use medicaid to apply to OPWDD for Consolidated Support Services funding to hire your own workers such as members of your circle of support.
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Marica, My previous comment to you obviously applies yet again. Please, again, is as readers if we wanted to read the Marcia version of a google search, we would. No one is asking for your advice, and I am not sure you are aware but it comes across as condescending and is quite distracting to readers. – so again, start your own blog of facts, because here we are all interested in Amy and Jonahs story. Thanks!
-DiAnna
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Developing Effective Programs in School &Home Settings for Children with ASD
Saturday, November 13th, 8:30am – 4pm Queensbury Hotel, Warren Room
Presenter : Dr. James Partington, BCBA-D
Research has clearly established the effectiveness of intensive behavioral intervention with children with autism. A great proportion of these services have been provided to children in 1 to 1 training sessions outside of a public school classroom. However, it is possible and desirable to incorporate these effective educational services within public school classroom environments. This workshop will review critical components for establishing and providing effective language-based behavioral interventions within classrooms. A review of issues related to, and specific recommendations for staff training, classroom structure and schedule, curriculum development, small group (1 to 2+) instructional strategies, skill acquisition tracking, and behavioral consultation will be provided. This workshop is highly recommended for educators, parents and consultants who wish to help public schools develop effective, data-based classroom services.
Our presenter, Dr. James Partington, BCBA-D is a licensed psychologist and Owner/Director of Behavior Analysts Inc. and STARS Clinic in Walnut Creek, CA. He and his company have more than 30 years in the field of teaching children with disabilities. Dr. Partington is the co-author of Teaching Language to Children with Autism Other Developmental Disabilities and author of The Assessment of Basic Language and Learning Skills (ABLLStm-R) and WebABLLS , He is published in a verity of journals for his research. Dr. Partington and Behavior Analysts Inc. provide extensive training opportunities, consultation services, workshops, STARS model classrooms and clinical services for children and families. The workshops he presents are based on his research and findings, within the field of Applied Behavioral Analysis, utilizing the conceptual framework of verbal behavior as developed by B.F. Skinner in 1957. Parents, families, early intervention programs, preschool programs and school districts benefit from his trainings across the country and abroad.
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