Autism expensive

Autism is expensive.  Holy CRAP, is Autism  expensive.  Now, I am not talking in just the ways you would expect: more doctors = more bills.  There is so much more that goes into it.  The more we get into the more we learn the costs that actually go into it.

Nolan getting his 24 hour EEG

You have the things you could likely predict.  We want to really get to the root of our child’s struggles so there are different types of doctors, specialties, and tests. These add up quick.  We have seen an ENT that prescribed an adenoidectomy, we ran a home food sensitivity test, seen a neurologist  that prescribed a 24 hour EEG (that included sedation and a hospital stay) and an MRI (also included sedation), and a sleep specialist that prescribed sleep meds…in 2018.

Nolan on his first day at the ABA center

Then you have the therapies we add.  ABA therapy, Speech and Language therapy, Occupational Therapy (all private) in addition to the public school we are blessed to be in the district of and don’t have to pay for. 

Nolan in his bed sock with his weighted blanket

Add in some tools- chewelry,  bed socks/compressions sheets, weighted blankets, iPads and sensory tools/toys.

RoadID bracelet

Then you have their inability to sense danger or cause and effect or control a meltdown so you invest in safety measures: door alarms, replacing all the broken things they inadvertently break, safety bracelets with ID information, extended child carry (carries are expensive) -for the pressure on their body, the comfort of being close to us, and to keep the wanderer close, a stroller that can hold all your children (for the same reasons as a carry), etc.

Then there is the biomedical healing many families try. Gluten free, dye free, organic, Nemechek protocol oils, probiotics, vitamins, and other supplements.  Those things add up and are not cheap in the first place.
Fish Oil Gummies 
Inulin Powder
approved Extra Virgin Olive Oil

Toys.  First you spend tons of money trying and looking for something they MAY play with, or you find something they love but they are rough on it or it gets a lot of wear and tear so you need about 12 of the same thing.  Or you may have a child who may have an obsession with something and you purchase them all the things to bring joy, and language, and learning from them.  This isn’t a spoiling thing, a giving them everything they want thing.  This is a doing everything we can to make sure they are happy, healthy (with as little stress as possible), and continue to grow into the great kids we love.

Then you have children who are non-verbal, such as Nolan, that will be ill or whining for days on end and you have no idea how hurt they are or what hurts. Then you have to decide to ride it out and let them cry, fill them with pain meds and hope it goes away or pay to see a doctor to find out what is going on.  This past week Nolan was not himself: upset and hard to get to smile about anything, sleeping more than usual (though nice, its an indicator), melting down easier at smaller things, etc.  I had to take him into (and paying for) urgent care–for them to 1) ask me whats wrong and say “I have no idea he is not himself and he can’t tell me so I am trying to rule medical out” and then for them to 2) tell me he had a cold.  (It ended up being GI on top of the cold–not something they could diagnose so no blame but the pain was real).

I am not writing this for pity. I am not writing this  to complain.  I do not want people to feel sorry for us or feel they need to help us.  My point is this.  When your child has Autism you  make sacrifices.  A lot of cases, this can be financially–which means we make choices and sacrifices in OTHER areas.  This may be dinners out, this may be certain restaurants (beer budget instead of champagne), it may be trips, it may be sitters (which is hard enough), etc.  Just know we/they are trying– they are trying to balance it all between what they can do financially, emotionally, and logically.  They have a couple extra plates they are spinning on the regular parenting circus act.  We just want you to understand.  We want you to “get” we have a couple other things we have to decide, weigh, plan, organize and facilitate.  Just, PLEASE, be patient, be understanding, and know we are just trying our best (even if we have no idea if we are doing it right).

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