04/25/2026
Everything - absolutely all of it - is to ensure his quality of life.
I’m a rule follower; Always have been. To a fault sometimes…
At first, when Dax was a baby, I would take some of the denials at face value and I trusted the officials in whichever associated organization we were working with…
Until I realized they weren’t there FOR him; they were there for themselves. That they guarded the federal funds like it came from their own pocketbooks.
We’d been following the rules and protocols established by the government to ensure that I am providing proof that Daxton is “disabled enough” for all of the equipment, nutrition and medical appointments we are using. Under MediCal, under Tri-Counties Regional Center, under the VUSD, all of them.
Keeping services requires a fight i didn't expect. People who sit in their offices and will never know him other than what they've read on a piece of paper decide for us.
Before you ask, and they always do, all of our screenings and scans? ‘Normal’ (I hate that word). There was zero indication that Dax would be born needing some kind of assistance for the rest of his life, governmental or otherwise.
That’s the part I can’t wrap my brain around… The people who claim to be ‘pro life’, who passes judgement and gives side eye as they pass Planned Parenthood or tells me “God doesn’t give us anything more than we can handle” or “He gives special babies to special parents”…
are the the VERY same ignorant (and/or ableist) people, claiming that what our family does to support Dax is somehow “cheating the system” or that caring for him beyond the basic scope of traditional parenting is somehow “just my regular responsibility as a parent”. Yes, I do all that I do for him because I am his mother, but a special needs parent just does significantly more for a medically complex child than a typical one. That is just a fact. Anything to the contrary suggests that they are not worthy of the same baseline, and that couldn’t be farther from the truth.
All children deserve to breathe.
All children deserve to be fed.
All children deserve to be safe.
Some complex children like Dax require extra help to have their baseline met. Their most basic needs and rights.
For years, the pro life argument has been that a fetus is a “life”. No matter where you fall on this issue, let’s match that pro-life energy after they’re born. With all diagnoses and accommodations.
Dax will be 5 in June. We are living this reality everyday:
- He’s non-verbal. He uses mostly ASL to communicate. I’m still fighting our school district to use this as his preferred method of communication.
- He doesn’t eat solid foods yet. I had to take TriCounties to court to make them fund his formula.
- He’s slowly potty training. I had to take both Gold Coast and Tri Counties to court for them to cover diapers as durable medical equipment.
What would you suggest Chris and I do? Not care for his individual & specific needs? Not ensure he receives what he is rightfully owed?
It is dangerous for people who sit at federal levels to regurgitate this rhetoric - that families
'are getting paid to do things that they used to do as family members for free. And this is rife with fraud....- this dehumanizing language is not something our community has never faced before but we have come too far for it to be rolled back and all progress from the last twenty years be lost.
Every 120 days, we have reviews and recertifications we have to complete in order to keep the access to Dax’s care. Last month, I met with his regional center for a planning meeting for his services and whether or not we’ve been using every minute and hour to justify the expenses. Next Monday we meet at the school district for his IEP and school services (where I’m sure we’ll agree to something they’ll refuse to follow during the school year).
Once a month I call and have to verbally remind the DME company to place an order for his diapers, and place the order for his formula supplies.
I am not arguing that some people don’t abuse the system, but by saying that “…we are paying for fraud now as much as for medicine,” is carving out a false narrative that will justify drastic cuts in the future - life altering cuts - to the very thing that is keeping vulnerable people like Daxton safe in their homes - with, not only little pushback from our community, but also encouraging those who do not walk in our shoes to agree with these cuts.
Medicare was passed in 1965 to help elderly citizens receive affordable healthcare. It took ten more years to extend that to those under 65 with disabilities to access these benefits as well.
People are using goFundMe to afford basic necessities for their disabled children, because they have been denied what is rightfully theirs and don’t know they can fight. TO LIVE.
$563.32 - that’s what it currently costs us every month to pay for the nutrition and toileting needs Daxton has.
And that’s before you add in the cost of the gas and time we dedicate to all of his therapies and doctor visits across the county.
If you made it this far, thank you. Like I saw another mother state, for every person that somehow “knows someone” who they believe ‘cheats the system’ and ‘doesn’t need services’, now YOU know two people (myself included) who is following every single rule and jumping every single hurdle the public benefit system throws at us.
Life happens. I am evidence that we are all one bad day or accident away from becoming disabled. These programs are necessary, safety nets for all of us.
You cannot be “pro life” and continue to support people who see no value in the resources and support necessary to care for myself and my son.
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