As many of you already know, Jake was diagnosed with Aspergers in July. I don't think it's been something that I've been able to really type out on the blog because it's a difficult thing to face. Or, type. It's taken me this long to decide that writing this blog was still worthwhile even though I'm so overwhelmed, and tired, and just plain depressed. I think our journey on this new path might help others facing the same journey and who knows, maybe even some hope.
So, I'll back up a little bit just to give the summary of the last few months. Back in June I wrote about my concerns about Jake. His meltdowns, obsession with rocks, shells or anything tiny, inability to stray from routine easily, and the fact that it usually seems that Jake has only 2 speeds, highly anxious and hyper or completely missing in action. Like he's somewhere else.
I finally contacted a friend who had already had her daughter through a few assessments, got some advice and called the folks that evaluated her daughter, Children's Hospital (The Boone Fetter Clinic) and the Westside Regional Center. There was a big part of me that didn't think he'd get diagnosed with anything. I thought they'd tell me I was over reacting and he's developing as any normal 4 year old would. Both Jonathan and I were profoundly shocked when we heard different. The word that would change all of our lives forever was said in both assessments, Aspergers. Otherwise known as AS, Aspergers Disorder or PDD which is a blanket term for Autism, Aspergers and other Sensory/developmental disorders.
Aspergers is a high functioning form of Autism and is on the Autism spectrum. It's different from Autism because speech and cognitive development usually is not delayed or impaired significantly. Jake has a lot of words, but he uses them in unusual ways, doesn't understand things like sarcasm and takes everything very literally. If I were to say someone let the cat out of the bag, he's be looking for the cat. That phrase would probably go over any four year old's head, but I'm just using it as a example.
Since the diagnoses I've been introduce to fun new terms like occupational therapy (OT), speech therapy (ST), ABA (AppliedBehavioralAnalysis) and social skills therapy not to mention an IEP through LAUSD, and diets like the GFCFSF (gluten/casein/soy/food coloring free diet, & annual medical tests: Stool test, RBC, Toxic metals and allergy panel. I've also sadly been more enlightened to just how expensive these therapies are and how fucked up our Aetna insurance or really the insurance industry as a whole really is. We have a insurance policy that should cover PDD/AS but Aetna is making it as hard as possible to get it. I've been on the phone an average of 2-3 times a day with them and have gotten nowhere since July. Right now our "case" is in a black hole limbo land, otherwise known as "expedited appeals", where no one answers your calls and your only option is to leave messages for "someone" to listen to and maybe return your call. I've had no return calls to my messages for two weeks now and am about to call again as soon as I post this to the blog....
Just to enlighten a few of you to the stress mostly every parent with a AS child goes through,
here are a few of the issues I loose sleep over every night.
1. Your friends don't understand your problems or stress....for instance......my friends always tell me, "oh he is just a typical kid...we all have that problem....", but they don't. Or, "he seems normal". I know they just want to be encouraging, but I wish they understood. Unfortunately, they never will.
2. Worry...the worry for your child and what the future holds. Will he be able to function and hold down a job and take care of himself.
3. Pain...the pain you have knowing your child has no friends or loses friends easily. The pain knowing your child feels different. The pain knowing your child has been bullied or teased.
4. Fustration because teachers don't understand your child and the way he thinks.
5. Frightened because your child is ANGRY! and won't talk to you...won't tell you what is going on... tells you he hates you and wants to kill you.
6. Horrified that he/she may be misunderstood and end up in legal trouble as an adult. horrified at his aggression towards us, his family, and other children.
7. Tired...tired from all the daily battles... battles with the school, battles at home doing homework or other routines.... battles with eating, battles with behavior, battles with family that don't get it, battles with insurance.
8. Depressed because I feel I can not help him. Depressed that he can not enjoy the things others do. Depressed because I get to hear about everybody else's neurotypical kids and all the brilliant neurotypical things they do.
9. Sad because I love him so much and his life is hard and he is angry and depressed. Sad for his sister and that she'll never have that "older brother" there to help her, instead she'll probably have to help him at school and with everyday tasks.
10. Frazzled because of his behavior and the influence it has on his sister and the fact that she will be disciplined differently and I have no idea how to do that.
11. Overwhelmed with this new path and all the things I have to figure out in the next year:
Here is a sample list from TACA which is completely nuts. I'm trying to not panic but this isn't helping.
|First Year||Second Year||Third Year|
|1. Formal assessment anddiagnosis: neurologist, behaviorist, speech & OT||14. Get support & information!! Attend regular TACA or other meetings.||1. Perform annual assessments: neurologist, behaviorist, speech & OT||1. Perform annual assessments: neurologist, behaviorist, speech & OT|
|2. Ruling out medical tests: genetic disorders like: Fragile X (boys), Rhetts, Landau Kleffner. Perform MRI & 24 hour EEG.||15. It is all in the POOPS: deal with the constipation or diarrhea||2. Perform annual medical tests: Compreh. Stool test, RBC, Toxic metals and allergy panel||2. Perform annual medical tests: Compreh. Stool test, RBC, Toxic metals and allergy panel|
|3. Call ||16. Educate yourself about the potential dangers of vaccination.||3. Evaluate all medical and traditional therapy options for their efficacy.||3. Evaluate all medical and traditional therapy options for their efficacy.|
|4. Start theGluten Free/Casein Free/Soy Free (GFCFSF) Diet||17. Evaluate Glutathione! – try oral, topical then IV – with your doctor's help!||4. Get involved in state & federal legislation efforts.||4. Get involved in state and federal legislation efforts – get family involved.|
|18. Considerchelation||5. Continue social skills efforts with preschool activities. Consider social skills videos.||5. Continue social skills for advanced needs with local providers.|
|6. Remove allergens (from diet and environment)||19. Start Social skills development – with structured play dates at home||6. Keep learning your childs legal rights and get educated.||6. Refine supplements: take supplement vacations. Change brands of supplements as needed (i.e., rotate probiotics.)|
|7. Remove additives, preservatives , and dyes from all foods. Go organicand clean diet.||20. Hire an special education attorney or advocate. Learn your legal rights!||7. Get an Immune assessment consider oral IG, or IVIG||7. Evaluate alternative therapies:HBOT,neurofeedback, etc.|
|8. See an audiologist for a complete hearing evaluation.||21. Understand health insurance coverage and reimbursements!||8. Considerlistening therapies||8. Continue education:DAN! Conferencesand others|
|9. Encourage proper sulphanation with nightly Epsom salt baths||22. Keep your marriage & family intact.||9. Consider arotation dietto prevent future allergies. Or other dietsSCD, BED if GFCFSF is not enough.||9. Keep your marriage & family intact.|
|10. Start basicsupplementationand probiotics.||23. Help your child obtain the 8-10 hours a sleep each night.||10. Refine supplements: take supplement vacations. Change brands of supplements as needed (i.e., rotate probiotics.)||10. Continue, review and test other chelation protocols.|
|11. Test for andtreat YEAST (Go low sugar and lowcarbohydrates!)||24. Further refine diet:remove phenols, sacylilates & corn||11. Continue education: DAN! Conferences and others||LAST RESORT:Consider pharmacology when medical efforts are not progressing.|
|12. Investigate & try the “Bs” – B6, B12, TMG or DMG or SuperNuThera.||25. Remove toxins from water, bedding, clothes, etc.||12. Continue rec. Respite and support! Keep your marriage & family intact.|
|13. Omega 3 supplements! Cod Liver Oil, or Flaxseed Meal, etc.||26. Fathers are important too!||13. If your child is 6 or older consider CAPD evaluation by an audiologist.|
I'm just trying to remember to breathe and not be so resentful of the cards that were dealt because even though I didn't ask for this, neither did he. He can be a sweet boy and with intervention hopefully we'll uncover that boy even more.