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Cassian's autism medical fund

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My name is Amy West and I have a 3 year old son Cassian (almost 4) with autism.  I am raising money for his treatments, medical expenses, occupational therapists, testing, teaching aides, and I'm sure I am forgetting more than that.  I have tried to handle the expenses myself but as my sons autism is on the severe side I can no longer help him financially.

I am a single mom on disability for PTSD related to working in the Pentagon during the September 11, 2001 terror attack.   I continued to work in the Pentagon for a few months before I was transferred out.  Because I am a Pentagon survivor there are no funds available to me to help with my medical expenses and my son and I are living on an income of 1750.00 per month.   My son's father moved out of state and I have no idea where he currently is.  My family doesn't have money and almost everyone I know is struggling financially - I own my car (a 2001 honda accord with 120k miles on it) - I have nothing to sell and nowhere to go for help.

I am new to fund raising online - don't know anyone who has done this so I would ask for your patience.  My son Cassian is a beautiful child inside and out - his brain is just wired differently and its not something that can ever be fixed.  Because I am on SSDI my son qualifies for Medicaid but it does not cover much of his expenses - things like specialists and procedures, learning aides and occupational therapy.  

My son started in therapy when he was 10 months old - he was diagnosed with sensory processing disorder.  He never babbled or made any kind of noise unless he was crying (and he did a lot of that).  He also had GERD, has bronchiolitis and a collapsible trachea which requires a very specific type of nebulizer medication.   He has a condition on his skin called keratosis pilaris - it causes his skin to be itchy and requires expensive lotion to treat it.  He wants to eat anything but food - I have to be constantly vigilant as he will eat lotion, detergent, dish soap, shampoo - anything non edible.  He is active and very strong.  He throws very physical tantrums in which he tries to injure himself by banging the back of his head on any hard surface (concrete - tile - linoleum).  He is 40 pounds of muscle and injures me on a regular basis - mostly because I have to physically keep his head safe and the rest of his body kicks and hits me in an effort to make me let go.  When he gets these out of control tantrums I will put him in his crib for safety - so he has chewed on the crib to the extent that his front bottom teeth are exposed to the dentin.  I did not realize he was doing this until I recently moved his crib.  He does not like the texture of food so I have had to get all of his nutrients into him via a bottle.  He is still in diapers as potty training kids with autism has its own unique problems - for Cassian its that he is just now getting body awareness.  These are just some of things I work with daily .  He doesn't sleep well and wakes up several times a night crying - when he's sick he's up 20 hours a day.  Its just he and I so I am exhausted pretty much all of the time.  The things listed above are behaviors - not my son.  He is an extremely sensitive child - sensitive to his environment and to much stimulation.  He is strong willed and cannot be forced to do anything.  He is extremely bright but cannot communicate in the ways he would like.  I have researched  autism and spent hundreds on making aides to help him learn but now that he is older its getting harder to reach him.  

Cassian's medical future:  In the next 4-6 weeks he will be seeing a forensic psychiatrist for diagnosis of his autism.  He will then go for a series of tests - an MRI being on the top of the list.  His doctor is worried that he might have hydrocephalus or water on the brain.  If the test is positive he will have to undergo brain surgery  to get rid of the excess fluid.  Cassian is on a wait list to see doctors at the Kennedy Krieger Institute in Baltimore MD.  They are the best and will do more testing - that testing will run between 3800 .00 and 8,000.00.  They will come up with a treatment plan for him based on about 8 hours of testing - medicaid will not cover any of this.  I put the amount to be raised at 15, 000.00 because I don't know exactly what he is going to need but will need the money  because the providers do not have payment plans or sliding scales - its payment at the time of service.  I am also looking ahead to his schooling.  He is currently in a program through the county that has helped him immensly but school will be an issue in the near future and I worry about him being bullied by other kids or hurt by them.  The private schools in this area specializing in autism disorders range between 35,000 - 41,000 per year.  

My research suggests that the most critical time to get the most results in children with autism is before they are 5 or at the age of 5.  I am doing everything I can to give my son a chance of some kind of life but am at a point where financially I cannot get him the help that he needs.  There are literally hundreds of sites offering referrals and help but I don't have the time or energy to chase them down - they are a million bunny trails - everyone wants to refer you somewhere else and it just goes on endlessly.

My son and I only have each other - I cannot tell you the number of tears I have shed for my son.  His first year of life he had 54 doctors appointments. He has been poked, prodded and generally traumatized due to doctors (so few pediatric doctors even like children).  I love my son so much and see this intelligence and sweetness in him - but his brain gets in the way.  Every once in awhile he will look at me like for a second all the confusion and misfires in his brain have stopped - and I see him and he sees me and it breaks my heart - he's trapped inside and neither of us know how to get him out.  Then the clarity in his eyes is gone and for him the confusion is back.

If you cannot give pray for us - if you can help know that I am more grateful than I can put words to.  Unfortunately money makes the difference - without it I can't get him the medical care and programs he needs.


Amy West
Fairfax, VA

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