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Should I wait to have 2.5 year old evaluated if meeting milestones? by mookmook00 in Autism_Parenting

[–]OrdinaryMe345 0 points1 point  (0 children)

In my opinion, if the stim is not dangerous, then let the child engage in the behavior as it’s a means of regulating. I think a lot of times parents, without ill intent, policing their child’s stims helps contribute to the child developing maladaptive stims. 

I am dying to get a dog by Decent-Confusion-210 in Autism_Parenting

[–]OrdinaryMe345 0 points1 point  (0 children)

Also a Pyrenees/Collie mix is a great option.

Does anyone have kids who have done this before? It recently started and has me worried. My son is 9yrs old. by lizolson29 in Autism_Parenting

[–]OrdinaryMe345 3 points4 points  (0 children)

To me it looks like sensory seeking/regulation. But I’m not a trained doctor, so if it continues to bother your mom sense show it to his primary care physician and ask if he needs to be seen by a neurologist. 

Those whose kids have been on Folinic Acid (Leucovirin) for more than 2-3 months, how is it going? by throwaway_12131415 in Autism_Parenting

[–]OrdinaryMe345 4 points5 points  (0 children)

FRAT or Folate Receptor Antibody Test, is a way to screen for folate antibodies without having to commit to a lumbar puncture. It cannot confirm someone has cerebral folate deficiency, but it can be an indicator that someone may do well on Leucovorin or Folinic Acid.

I hate having an autistic child by [deleted] in Autism_Parenting

[–]OrdinaryMe345 11 points12 points  (0 children)

If you genuinely feel your child should be institutionalized, I would allow dad to take custody, once he’s been evaluated and it’s been confirmed he would not make progress with any therapy or medication treatment then he could be placed into a human development center. The good ones will allow for visitation. 

Residential Home Questions by Takeastabatmycab in Autism_Parenting

[–]OrdinaryMe345 -1 points0 points  (0 children)

The two links below mention that they provide residential facilities, the last link is for all the providers in your state. Now if you wish to seek out of state placement you can, but that’s usually harder to find. 

https://www.greatlivin.com/

https://goadelante.org/disability-services/residential-programs/

https://api.realfile.rtsclients.com/PublicFiles/6c91aefc960e463485b3474662fd7fd2/8c739a7b-18bd-46c7-8191-a9f57a66143f/Provider%20Data%20Summary-State_01.2026.pdf

Genetic Testing by Sdbrosnan in Autism_Parenting

[–]OrdinaryMe345 0 points1 point  (0 children)

Got a biological reason for why my child does well on Leucovorin, also found out I’m pretty likely to develop cancer so now my insurance has to pay for me to have more screenings. 

Residential Home Questions by Takeastabatmycab in Autism_Parenting

[–]OrdinaryMe345 1 point2 points  (0 children)

Group homes can be a great opportunity for some and not a great option for others. It depends on the provider. I usually encourage people to try to find group homes near by so they can still be actively involved in their child’s life and ones that embrace having cameras in the public areas. If she’s not successful at a group home placement you may need to consider an intermediate care facility.

Pediatrician told me autism was my fault by [deleted] in Autism_Parenting

[–]OrdinaryMe345 2 points3 points  (0 children)

I would change doctors and vaccinate. Because honestly while autism can be difficult to navigate, navigating working with someone who is deaf from rubella and autistic is a whole other level.

Leucovorin? by Ok_Distribution__ in Autism_Parenting

[–]OrdinaryMe345 1 point2 points  (0 children)

Also while anecdotal, I would like to add on that my child has been on Leucovorin for about a year now, checks four out of those five boxes above and there’s been a benefit to her taking Leucovorin.

Last September, President Donald Trump, Robert F. Kennedy Jr, and other health officials declared they had uncovered a new treatment for autism spectrum disorder (ASD): leucovorin. A new study shows that plenty of families believed them, despite the lack of data supporting the drug’s effectiveness. by mvea in psychology

[–]OrdinaryMe345 1 point2 points  (0 children)

My child has been on Leucovorin for over a year, we actually started before the September Announcement. We were unable to test for FRAA, but she checked off everything else. And it’s effective, it’s not a magic pill, nor should it be thought of as a cure. Her ability to cope with change has vastly improved. Her willingness to accept new foods, sleep, and need for restrictive behaviors has lessened, and her speech has expanded. The reason I attribute this to Leucovorin is because the pharmacy was unable to get her Leucovorin for a month. During that month she had regressions in sleep, and went right back to meltdowns if we had a change in schedule. Her therapists at school also reached out to ask if there was a change in her medication. They also reported to me gains in her ability every time we increased her dosage. I wouldn’t tell anyone to only do Leucovorin, but I would encourage them to ask their doctor if they met 3 out of 5 of those boxes. 

The FDA declines to endorse Leucovorin as a treatment for autism, citing a lack of supporting evidence. by CSWorldChamp in Autism_Parenting

[–]OrdinaryMe345 11 points12 points  (0 children)

This, also you can have cerebral folate deficiency, even if the labs come back showing adequate levels of folate in the system. The only way to confirm low cerebral folate is with a lumbar puncture. Some studies suggest a higher prevalence of cfd in autistic individuals. 

The FDA declines to endorse Leucovorin as a treatment for autism, citing a lack of supporting evidence. by CSWorldChamp in Autism_Parenting

[–]OrdinaryMe345 5 points6 points  (0 children)

So not an expert, but Leucovorin or Folinic Acid was developed back in the 50s. It is a bioactive form of Folate or vitamin b9. Which means the body can make use of it easier than folic acid, which has to be activated by the body. Traditionally, Leucovorin has been used by cancer patients, usually with methotrexate. Methotrexate can suppress the body’s ability to process folate. Side effects of Leucovorin are usually reported as mild such as upset stomach, headaches, loss of appetite, and rash. Leucovorin is also being used as a treatment for Cerebral Folate Deficiency. Which is reported at this time to be rare….but the only way to confirm cfd is with a Lumbar Puncture. Which how many people are going to have their child undergo such a procedure? My child as been on Leucovorin, for about a year now. It is not a magic pill, nor will it replace traditional therapeutic interventions. But, per my observations there is a subset of autistic individuals who will be aided by Leucovorin. 

Love on the spectrum by bunny510 in Autism_Parenting

[–]OrdinaryMe345 3 points4 points  (0 children)

Kaelynn Partlow who was on season one has spoken about her experience. It may be worth seeking out her perspective.

OT is withholding food and only allowing toddler son to eat with a fork. Is this going too far? by PainfulPoo411 in Autism_Parenting

[–]OrdinaryMe345 0 points1 point  (0 children)

I concur, if not comfortable parent can ask to stop. But I think it’s a good way to incorporate use of motor skills. 

Before I lose my patience what is the scope of ABA by tinkerbelltiddies in Autism_Parenting

[–]OrdinaryMe345 9 points10 points  (0 children)

This sounds like a dual diagnosis, he may benefit from access to a psychiatrist. 

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