The Incredible Shrinking Voice
President Biden Was Wrong: Two Industries Have a Liability Shield

Do You Ever Really Rest?

91A3DA1B-5E76-4A99-A055-B90900EBAD6EI saw this graphic on Insta yesterday. Haven't we all used our never ending exhaustion as a badge of autism honor? But how long can we manage before the badge simply weighs too much and we collapse? The Puritan work ethic has always been a American "thing." Autism families have taken it to an extreme.

In Connecticut we have pretty good DDS budgets - assuming your son or daughter with autism has a testable IQ under 70. If 70 or above, you're on decade long wait list for the handful of autism waivers. Other states are far worse than Connecticut.  Are you aware of the wait lists in your state, or country, if you're not in the USA?

Having budgets is a blessing. Finding staff is a curse. I have dollars for respite, and I self-hire. this means that either I have to leave my house, or I have to send off my 3 daughters with staff to a hotel - that I have to fund. Respite dollars are only for staff. So we stay home. A LOT. Together.

Tell us how you are planning, hoping, worrying, dreaming of the future for your loved one with autism. I think we'll be exhausted until our last breath. Such is the plight of caregivers, and women in particular.



Colorado has consumer directed Medicaid HCBS and allows parents and family members to be providers. This means instead of waiting years for a host or group home to have an opening, families become the host home and get compensated at the same rate. It's not ideal (would prefer an awesome place with awesome staff and independence for my son), but the payments make it feasible to plan and finance long term care when we are gone. Families who are caring for disabled adult children need to demand this. In Colorado, the state used to manipulate the waiting list by not putting families on it unless they were ready for their child to be placed outside of the home. This was wrong, the individual should get the services wherever they happen to live, and families should be compensated for providing that same level of care.


My son was in school and then in a fancy smancy ABA program till he was 25. Long story, but I took him out and we've been home together for six years now. The last three years have felt like 3 hundred. He's a great person, he's kind and caring and gentle...till he's not. Full moons and seizures every few days, I'm so tired. The nights of not sleeping are hard, the nights of seizures and/or behaviors are harder. The physical fatigue is a lot, the emotional fatigue is probably the most draining.
In Texas our budgets are a joke. When my son had to have shoulder surgery due to 32+ dislocations during seizures, they placed him in a body cast. How much help did I have...ZERO. Texas would only pay $9 an hour for someone to help. No one was willing, and who can blame them? We wear those battle scars like the survivors we both are.
My very sketchy plan is to move out of the city. To build a tiny home for my son, beside my own. He wants/needs some independence so badly. But because of seizures I just can't be that far. We hope to work in a vegetable garden most the year and sell our extras at the local Farmer's Market. Where we can at the least have some other human interaction.
Not a giant plan, but for now it's all I can come up with.


What about "disability" in general like mental illness, physical disability sensory disability,, life threatening medical issues? They have even longer wait list. Neuro-Fibromatosis 1 and Tuberous Sclerosis can happen without Intellectual Disabilities, but those patients still need help like independent living and vocational rehabilitation but without ID/DD they may not be eligible for most services.

L land

I am fortunate to have funding in a state with a long wait list (5000+). Recently lost a long term caregiver and finding it difficult to even find people to interview.

Ronald Diebel

What is DDS?


Kim-I totally identify with everything you are saying as I have an adult son with autism living at home and it is a very exhausting and demanding way of life. You wonder if you can keep going and worry about the future and hope that maybe we will be lucky enough that someday a cure will be found while we are still here to take care of them. I pray a lot and stress out a lot and just wish for this miracle cure that I want so badly for my son and all the others afflicted with the terrible condition of autism. God bless our precious and special children.

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