Matt's mommy, BLESS your heart! Your signature touches me so much. I can really relate to your Aspie's flying off the handle over every little thing. Though we are not in perfect shape here we are miles ahead of where we were 4 years ago when he was close to living in res. center. My familly had the same cocerns (and if I am honest, I think them sometimes too) as your daughter.
For us here (outside of the obvious medication management) is what is helping. You may be already doing these kind of things and just ignore anything that seems to not apply. I certainly do not have magic answers....
1. picking and choosing our battles. The Explosive Child methods really help us. I find myself starting in on every little rule broken and behavior infraction and then realize that to keep overall stress lower and his anxiety lessened (thus making him able to be more compliant overall--and making me able to make more appropriate parenting choices)....I MUST let some things go. I MUST prioritize our issues and tick them off one by one.
Maybe, again I dont live your life but just a thought, maybe it could be appropriate for your kids to even be part of that plan...Actually deciding and making a list of, "what we are going to do to help each other be calmer". then the focus can be spread and he wont feel quite as defensive??
2. We use the same words and methods across all settings. School, Integrated Listening Systems (ILS) (independent living skill workers who take him out in the community and work on life skills at home too), and our family time. Right now we use a color system that combines the "5 point scale" often used with kids in schools and the "how your engine runs" program used with younger kids or developmentally younger people. We have 4 color zones and made a book specifically using his emotions and coping tools. Blue zone=shut down and not very responsive (sometimes a good coping skill to become or stay calm, and sometimes an escape to avoid work). Green Zone=the target appropriate level for a situation. Actions and reactions equal to the situation (words for him are, able to follow directions, using appropriate tone of voice and words, being kind to other kids and adults, keeping hands and feet to self, etc.). Next is Yellow Zone=agitated, louder voice, using naughty words, non-injury physically inappropriate behaviors, being upset and on the way to red zone behavior...(in his case we include swearing here and eventually we will make swearing a red zone behavior, for now words are better than physical rage and injury....you tailor it to each individual child) and finally RED zone=rage, potentially dangerous behaviors like throwing things, hitting, kicking, unable to control self without extreme support). Once they are taught about these areas it becomes (and we are at this point now) as simple as saying you need to get into green. For kids who are set off by verbal input, you can have little color cards hooked together and just hold up the target card. (may show a yellow and say you are here....you need to be here---hold up green OR just hold up the green card) we tell everyone to be prepared to hear him say...I dont care about the dumb zones, I wont be in green etc....(or much more colorful language) but we dont argue and add threats of punishment we just give him time to settle. He nearly always does. Rare that anything goes beyond 5-15 minutes which can seem like a lifetime when a child is in RED zone)
difficult child is actually using the zone terms himself to describe his state and using to argue for why he should be able to do things. IE "I'm in green and I promise to stay there if I can go play nerf guns with the other kids). His doctors have the color cards too and they use the words with him too.
Of course it is not fool proof and there are seizure days (his trigger behavior issues) or bad health days or days when he is sooooo worried about something, or even so excited about something (like a school activity he wants to attend after school, he will blow it every time because his mind is too preoccupied to be able to stay on track, I dont let anyone threaten he can't go anymore because he was not getting to go to anything)
I believe the Occupational Therapist (OT) that developed this now has it published, and I am sorry I dont know the name of it at this time but I will check. send me a pm if you want the info. I like it better than the 5point scale that I even used personally for years at my work because it is more clear, and it has the blue zone which separates out the shut down kinds of states. It can help them express when they are tired or ill or sad/depressed etc.
It may seem like this is too developmentally "low" for a high functioning child but turns out it is really good especially for the higher IQ kids that become almost out of control due to their stress and anxiety issues/behavioral challenges. you can give a quicker, more specific cue in a way that reduces embarrassment in more public settings.
3. We are lucky to have Integrated Listening Systems (ILS) time and he is out of the home for most of it. I get a break. Others use respite or PCA or getting a sitter or mentor. Again, if overall stress in our home is lower, I do a better job supporting him. Dont know if you have ssi or some kind of county support for him to get pca, Integrated Listening Systems (ILS) or personal support kinds of services. There are other terms but it is worth asking if you dont already have these things. Some private insurance covers pca services and/or respite. He could be eligible for a cadi waiver or some kind of funding and it is not connected to qualifying for public assistance, it is based on his disability needs. Some programs require sliding scale parent fees.
Funding is tight and there are long waiting lists in states and counties that do have these programs (though there are usually emergency slots) but it is worth signing up because the waivers are often life long (if they continue to qualify) so it is worth getting on waiting lists. Eventually the monies can be used for job training and support for their living situations.
hope any of this helps or triggers other ideas that may work, even if not please know i understand and I am thinking of you.
