Thursday, August 15, 2013

Exhausted.

Ive mentioned it before that i go through phases or months where things are great and I'm fighting and i have this insane energy and positivity that all this fighting is going to pay off in the end. But then there are those times when i take a step back and look at the ABSOLUTE LACK of progress the past 2.5 years and wonder why i waste my time and mental and physical energy fighting a fight i cant win. There is nothing i can do that will rid Recker of his horrible villain that is Autism. 

Im exhausted. Mentally. Physically. EMOTIONALLY.
There have been times when i have thought to myself that Autism might literally drive me insane. 
I am anxiety ridden.
I dont sleep. I have Insomnia.
I lay awake every single night praying and trying to figure out what the secret is. 
WHAT CAN I DO?! HOW CAN I CURE HIM?

I do research and read medical studies and try to decide which one of the following treatments will be the one that finally gives recker the life he deserves. Which one or combination of several will finally give my my son back. 

1. Allergy Desensitization
2. Flavonoid formulation for allergy like symptoms and brain inflammation
3. Anti-fungal treatment
4. Treating Biofilm: chronic gastrointestinal issues
5. Chelation: removing toxic metals
7. Enzymes for digestive support
8. Enzymes coupled with specific ASD diets
9. Helminthic therapy
10. Fixing Leaky gut syndrome: using probiotics
11. Intravenous Immunoglobulin (IVIG)
12. Low dose naltrexone (LDN)
13. Medical Marijuana 
14. Melatonin therapy
15. Methyl-B12
16. Neurofeedback
17. Neuroimmune Dysfunction treatment with Antiviral therapy
18. Nutrigenomics and supplements
19. Psychotropic medication
20. Nutritional supplements
21. Transcranial Magnetic Stimulation
22. Treating Microbiome/biome and cysteine deficiency
23. Using stem cells
24. Treating thyroid and endocrine disruptors
25. Hyperbaric Oxygen Therapy and "congray"
26. Treating a cerebral folate deficiency
27. Changing environmental triggers
28. Speech-language Therapy
29. Implementing the Kaufman speach to language protocol
30. AAC: Augmentative and Alternative communications
31. Proloqquo2go
32. Transcranial direct stimulation
33. Music is nature and "congray"
34. Community based speech language pathology
35. Joint action routines (JARs)
36. Specific carbohydrate diet (scD)
37. Feeding therapy
38. Fermented foods
39. Applied Behavior Analysis (ABA)
40. Camphill schools
41. CARD eLearning
42. Drama Therapy
43. Floortime center
44. Integrated play group model
45. Integrative educational care
46. Integrating ABA with developmental models: MERIC
47. Relationship development intervention
48. Selecting the best iPad app for my child
49. HandHold adaptive
50. Camp Ramapo
51. Holistic approach to neurodevelopment and learning efficiency
52. Houston homeopathy method
53. Homotoxicology
54. Living Energy
55. Using Theraputic grade essential oils
56. Osteopathy
57. Craniosacral and chiropractic therapy
58. Dance/Movement Therapy
59. Yoga and martial art therapy
60. Therapy dog/animals
61. Aquatic Therapy
62. Reducing toxicity in our environment
63. Art Therapy
64. Berard Auditory integration training
65. Music Therapy
66. Occupation therapy and sensory integration
67. Sensory learning program
68. The davis model of sound intervention
69. traditional and indigenous healing
70. Vision Therapy


These are just a FEW. Literally there are THOUSANDS.
I shouldn't have to know these things. 

Besides a few friends I've "met" and vented with online, no one else i know even understands what any of the above list means. Those words aren't in my friends vocabularies. 

I am having a woe is me pity party over here. 
But sometimes i just wish someone else understood what i go through. 
How hard Autism really is. I would NEVER wish it upon my worst enemy.

Not only do i have to worry about keeping my house clean, frugally grocery shop, cooking dinner, making lunches for my husband and son, at least trying to attempt to do laundry, paying bills, and trying to be a decent mom to my boys, on top of that i am losing my mind about that above list, i am coordinating schedules between all of his 5 specialist doctors, therapists, DDD support coordinator, and school, trying to figure out how my husband and i will both be able to go back to school when we need his insurance from his work. 

Its sad that i am jealous of people whose biggest worry is trying to decide which dance or karate class to put their child in, trying to decide between charter or public schools, those whose biggest worry is how to calm their "cranky" baby, i wish my only worry in life was whether or not my child was eating enough nutritious organic food and wearing the trendiest clothes.  

I guess im just trying to justify those times when i feel like i deserve to "check out" to give up. Somedays i just want to close my eyes and sleep the day away. Not because im tired (which i am because i can not sleep) but because i honestly can not think straight, i feel like my head is so foggy and running at million thoughts per second. This will probably sound crazy (and its probably the sleep depravation talking) but i wish i had a little secretary up there in my head. Someone who could organize my thoughts and throw out the negative ones and prioritize everything i need to do.

I hate feeling out of control.
And my life spun out of control when Recker was diagnosed 2.5 years ago and it hasn't stopped spinning. 

The worst part is knowing that there is a chance he could get better. There could be some sort of treatment that helps him improve. 

Sometimes i wonder if it would be easier if a doctor told me that Recker will be this way the rest of his life. That no matter what i did, he will not improve. 

I think i could finally relax and stop stretching myself so thin worrying about what i need to be doing to "FIX HIM". I could mourn our loss of the future we planned and hoped for him, but we could finally live our lives. I feel like everything else in my life has been paused until i can figure out the combination of treatments and therapies that will finally "CURE" my son.

I feel like i am going insane.
I blame myself daily and beat my self up mentally every single day that goes by that theres no progress.
I feel like i have failed him.
Feeling like a failure day after day, month after month, year after year. 
I am just so tired.
I'm exhausted.



2 comments:

  1. This ENTIRE post (except for the insomnia issue) is absolutely everything I have felt and mostly still feel. Kayla, most days I am at a loss and sometimes I feel an emotional breakdown is just always trying to scratch its way to the surface. Some days I tell myself that all those feelings are still a problem because I haven't 'accepted' Brody's diagnosis but honestly I think it is just because trying to cure or help him get better seems so likely but so far away at times. Not to mention the impossible circumstances of affording the different treatments, time and energy to do it all. Sometimes when I let my emotions and feelings out to my husband (cause he is the only one who gets it) he tells me that I need to go see a counselor or therapist or something cause all of these feelings are eating away at me. I often get so angry and bitter for no reason or over really silly things.

    I am sorry that my comment isn't filled with "oh it gets better". I mean there are great days where I know Brody is doing better than he has in the past. But in October it will be 4 years since Brody was diagnosed and he still talk very little and rarely interacts with anyone else. I think the small improvements are wonderful and I always applaud them but the severe lack of communication always makes me feel like progress is so slow or not enough. Maybe we should talk in person or something cause really Kayla, your posts on this blog or FB almost always is the exact feelings I have experience. I have no advice to give. All I can say is you are not alone cause I feel the same way!

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  2. You are not alone in this journey. The only positive I can give you is remember the good days to help you get through the bad. Bless you for all that you do. There is a quote out there that says "a mother on a mission does more investigating than the FBI."

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