Son needs SO many therapies and we can't afford them all

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Hi all,

I'm wondering if anyone knows of where I can get some type of financial aid even though we aren't considered low income. My son was diagnosed with ADHD for 12 years and was diagnosed with mild autism last year.Lately we've had a new type of therapy added to his regime every few months. He was seeing a psychiatrist for ADHD meds, then needed an occupational therapist for his toe walking (sensory issue), then needed a physical therapist because the toe walking had caused problems with his muscles in his ankles. We were doing all of these, then he needed therapy with an optometrist for vision issues. These therapies were draining our family financially and we went into debt.

My son's anxiety went through the roof last year and led to depression. This all spiraled out of control and he made a suicide attempt. Once hospitalized, he was diagnosed with mild autism/anxiety with ADHD. We've made it through this crisis and he is doing better. We added a marriage, family therapist to all the therapists he was seeing since his emotional needs took priority. We are doing this on credit at this point.

Now the school is recommending some type of social skills training (I agree, he really needs this). He would have less anxiety if he had better social skills and was able to fit in with his peers more easily.

All this has drained us to the point we've had to cut OT and PT to pay for his therapy for emotional needs. We can barely afford a psychologist & psychiatrist & meds even with our health insurance. We haven't started therapy with the optometrist. Our deductibles started over in January so we had to cut out the OT & PT. Co-pays are $45 for each treatment AFTER we meet the deductible for each category. PT is actually $85 each week until we meet the deductible, then it's $45.

We are probably middle income and don't qualify for financial help based on income, but we're paying between $600-$1000 per month for therapies and doctors. I want to give him everything he needs but can't since our PPO requires we pay such a large portion. Are there any programs for people in our situation?

I've done Google searches for this already. I'm reaching out and asking for some direction from anyone who knows of a resource. Please don't tell me to do an internet search I've already exhausted the internet.

If this makes a difference, we live in Tennessee right next to Nashville. Maybe there are programs in Tennessee that I haven't discovered yet?

I don't think anybody here will be able to help direct you to government-services in your region for your situation.

That having been said, I believe that nearly the entire medical-industry is a scam, particularly that of psychiatry. You would get better results just by feeding your child properly instead of putting him onto all manners of medications (all of which contain various levels of neuro-toxins; no wonder he's acting up now - unfortunately, medications cannot be quit cold-turkey either, due to the withdrawal-symptoms; they have to be tapered off if he's been on them long enough to develop any form of addiction lest he really commit suicide).

Let food be thy medicine. I would recommend nutrition-rich food and supplements like...:
Organic fruits (apples, oranges, bananas, grapes, watermelons, strawberries, blueberries, etc), vitamins & supplements (B12, flaxseed, Vitamin-D and/or D3, Iodine-Supplements, Vitamin-C, etc), fresh & organic-vegetables (tomatoes in particular, lettuce, green bell-peppers, alfalfa-sprouts, cucumbers, etc), meat should only be organic and come from a source where the animals were raised and treated humanely (watching the "Earthlings" documentary was plenty of evidence to convince me to stop buying the tainted/contaminated meats from the corporate-industries), mushrooms are probably still safe to eat, Almond/Coconut-Milk, purified/filtered water only for drinking, etc.

I would absolutely avoid foods like or that contain...:
Sugars (processed/refined), High-Fructose Corn-Syrup, cereals (I provide video-proof that many of them contain neuro-toxins), tap-water, most grains, most breads, TV-dinners, pre-packaged food, anything with MSG, anything with Aspartame, soft-drinks, soda, pop, soda-pop, any kind of processed sugar-water, especially boycott those energy-drinks, anything that is clearly GMO, anything with food-colouring, most foods that contain preservatives, etc. Now for you to watch this following clips so that you can see for yourself that otherwise innocent-looking food can actually contain neuro-toxins that affect the health of your child...


Were I to give a recommendation, I would not point you to any of the traditional-doctors, but instead ask you to re-consider as to whether holistic or so-called alternative-doctors are really as much of the so-called quacks as the main-stream makes them out to be or if your child's health is really important enough to you, that you would be willing to question the "conventional" wisdom that "drugging" your child is really the answer to his health. I am of the esteemed belief/opinion that medicine (due to my memories that these things actually cured conditions and ailments before being switched out for medications) is always better than medication (due to my views of these things being that they are neuro-toxins) when it comes to health (also largely as a result of my own personal-experiences with the two).

Perhaps it would be best to visit a health-supplements store first and discuss the personal-experiences that they and/or their customers have had with recovering from unhealthy conditions before you make any final/rash decisions. I can provide additional references if you need if the clip on cereal wasn't enough to support my case or my above-recommendations that are based on my own personal-experiences with my own health-levels (yes, I literally do eat the foods I recommended, and I avoid the ones I listed as unsafe). May as well look into these alternatives or continue to get taken in by those medical-bills... here are a couple more references by the way.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277931/

Can you try doing some of them at home? Social skills training in particular, a parent who understands autism well will do a far better job than most social skills training programs.

Also, I think extracurricular activities that are based on some shared experience (either disability or interest related) teach more about interaction than social skills training programs do. And they have the added benefit of providing a good opportunity to make friends.

Thoughts:

Often times schools offer social skills training. If they are saying your child needs help with it, maybe they can provide something. In our district the social skills classes are worse than worthless, but speech class, believe it or not was the best "therapy" we had (when we had a speech teacher with a clue) for our son through our school. Usually it involve speaking with other kids, and your child is likely to have pragmatic speech issues being on the spectrum anyway, which is different from being non-verbal. Figurative and social speech is included in this. I don't know what is available for the older grades, but for younger kids they play games and practice conversation etc.

Obviously, I am not in a position to say what your child needs or does not need. Not everything recommended ends up being valuable. Sometimes it is the therapist that is the problem, sometimes the kid just does not have the foundational skills necessary for a typical therapy. And of course there are a lot of snake oil things (which I know you are not talking about--but I like to mention it anyway) of no value to anyone. I would take a good look at what you think is working and what is not, and maybe make some decisions based on that. If nothing else, it may help you target your money financial resources more effectively.

As far as financial assistance, your locality is going to provide the best information on that. I would try to see what local free advocacy groups are avaialble and see if they have ideas for you. Even organizations not strictly for autism, but cover developmental issues may be able to tell you where to go.

Wow I can relate to this, also. I was told my son needs a psychiatrist for his anger and anxiety. He needs OT for his Sensory issues, Social Skills classes, one on one speech therapy, and he needs some sort of listening therapy for sound sensitivity. It's overwhelming. We don't qualify for any financial aid, unfortunately. Our insurance covers only the one on one speech therapy. They cover one child psychiatrist in the area, but the one they cover has terrible reviews.

I agree with BAN-DODGER that food is a big deal and eating healthy goes a long way. However, my son is SO PICKY! He only eats a few things.

I was very concerned to read your opening post. From your account, it seems as if others are inaccurately seeing several different aspects and comorbidities which are signs/manifestations under the umbrella of ASD as completely separate entities. No wonder you are stressed by it, financially and generally, and your son is experiencing greater anxiety.

So far, we've had OT, PT, Speech and Behavior therapy. They've helped NOT AT ALL. None. Most OT you can do yourself. Look on Pinterest, there are some excellent blog posts about things you can do to help. Same with PT.

We do have him on the list for some social skills classes. But frankly, I'm ambivalent about it. I don't think he needs social skills classes. But I've heard from other parents that they form lifetime friendships in these classes, so we might try it.

My son was denied feeding therapy because he would put the food in his mouth, but not swallow it. So he didn't qualify. The reason he would put it in his mouth is because we had been working with him on his food issues. So, you can do that as well.

I've discovered there's almost nothing the therapists can do with him that I can't do better.

My son's school provided social skills lessons as part of his IEP. If your son has been stable on his medication, check and see if his primary care doctor is willing to prescribe it. Good luck!

I'm no parent, nor do I feel I have enough knowledge to provide you with a perfect answer,
But one thing I have done to improve my own social skills, empathy and teach myself to identify emotions is I have studied neurolinguistics for some time now. I can say I've made some wild improvements, I now can be very charming, I can give lectures without feeling overwhelmed and even keep small-talks up for several minutes.

If you feel like teaching your kid yourself, I can show you a list of books on verbal and non-verbal language, liespotting (autistic people are usually "easier" to deceive) and psychology that REALLY REEEEEEALLY helped me and might be a good way for you to teach your child.

I have some colleagues that help me with social situations when they're around.
PS: I've attended many courses on communication skills in the past.

Your effort to help your child on his mental health is really incredible. When I was a child, the answer I got when asking for such help was "You're not bleeding nor have any broken bones, so you're perfectly fine.". I was not.

Even if this answer doesn't help you at all, I hope you find very soon the solutions you seek, for love and dedication you seem to have plenty already .

Peacefully,
Dante.

Of course I don't know your child but I'd like to give you a little bit of information that you can use or discard however you see fit.

Many autistic children continue to (slowly) develop on their own throughout their lives. People like myself got through childhood before treatment was available. Today, I can't help but think that sometimes parents attribute the results of natural development to treatments. I think sometimes the medical industry plays on parental fear, knowing most parents want to feel as if they are doing absolutely everything they can.

In addition, to at least some extent, sometimes the problems NTs have with their autistic children seem to be NT-related and not autism-related. What I mean is, the parent might blame autism for the way the parents feels. Sometimes NTs can see a fairly harmless behavior (which may or may not apply to your child) and have a desire to "fix it" at all costs. One doesn't have to be an OT to know that kids eventually grow out of toe-walking as they develop.

As for social skills training, I think that training area is in its infancy. There are blind spots in the area of social skills *and* in the area of social behavior that NTs can't see. As an example, most people believe that "more social skills is better", but that is not always true. Personally, I have learned that making a social mistake as a stranger is less painful than making a social mistake as an acquaintance. NTs have social reciprocity which means if you hurt someone, chances are they will hurt you in return. It is called "deserving" something. As another example, what good is learning how to do something socially when somebody simply cannot think socially in "real time"? It's a case of book knowledge being inapplicable on the streets.

Now, I'm not saying that therapies are a waste of time. I don't think they are. I just wanted to let you know that your son's condition is not 100% in your hands. That might be scary, but also hopefully a little liberating.

The most important thing a parent can do, in my opinion, is to learn to see their child as "normal" and learn to be a little autistic themselves. It is so much easier for me to be around my mom (who is also autistic) because I can be myself. With my NT dad, I censor myself so heavily that I tend to avoid him even though he seeks out my company. Unfortunately he interprets all of my words and behaviors through his NT lens. Even if I knew how to "pass", as many people teach autistic children to do, it doesn't solve the problem that one-sided relationships aren't that much fun. Although, as a child I didn't mind one-sided relationships.

I know it's easier said than done, but everything is going to be OK Don't forget to take care of yourself, too, so you can be there for your child through the years. One loving parent is worth an entire *world* of therapies.

I just wanted to commiserate with you over the insurance costs. We had to get individual insurance for the first time in years (have had it through employers, in between) and I was shocked by how expensive and fee-laden it had become. Our deductible is $4500 indv/$9000 fam and we also have a $50 co-pay fee for every visit, which of course does not go toward the deductible. The gal at the clinic we'll be going to said she's never seen a plan that has a per visit fee AND deductible requirement. She said it's usually one or the other. This is on top of the nearly $800 per month premium. I swear it would be cheaper to not have insurance. (Cheaper, but reckless!)

Sorry I don't have anything else to add. I do concur with the posters who said to try and duplicate some of the PT and OT at home, if you can. One site I really like is MamaOT. I actually came across it when my daughter was born two years ago, for entirely different purposes, but she seems to have good resources.

Hang in there. Financial stress is serious stuff.

Talk to the special educator in charge of his case. There may be some way that the school can help you. Especially with the OT and the social skills training. Those are definately under the umbrella of the school's responsibility. What you have to prove is that these issues are negatively affecting his ability to gain an appropriate education. Please let me know if you want to do more brainstorming along that line.

You can talk IEPs in the summer, BTW. It will be harder to track your teacher down, but it can be done.

gofundme?

I really don't know, but I wish that I did. I live near-ish you (2 hours away), but I don't know of anything specific to help.

I had thought public schools had to offer OT, PT, and speech therapy if kids qualified?

I wish I had something better for you. Your life sounds difficult.

For OT and social skills/speech, if your son is willing, I would try to get your school and/or yourself to get a program from the professionals and follow it at home. Visiting every 6 to 8 weeks or so could be much cheaper.

I'm a teaching assistant in the UK and I work with a child following a program for speech therapy and physio. For social skills, I would encourage reading books on social skills, perhaps a bit of psychology (I've found this helped me anyway - I'm not great with social skills but understanding what people could feel in a variety of situations has helped me), if he's old/mature enough.

The thing that helped me most was getting as much volunteering/work experience as I can. This is because it's very easy to set up a situation where you shadow a person and can learn their mannerisms.

I also had a long spell of time with a psychologist (thank heavens for the NHS) and they should be able to talk about navigating social situations with your son, if that's what he wants to talk about. It wasn't the focus of my therapy but when I needed it, it was there.