Monday, October 4, 2010

Life in the World of Aspergers

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 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 YearSecond YearThird 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 panel2. Perform annual medical tests: Compreh. Stool test, RBC, Toxic metals and allergy panel
3. Call ABA (AppliedBehavioralAnalysis) providers and get on wait list. Implement intensive 1-on-1 therapy program.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) Diet17. 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.

5. Find a DOCTORfor the long term! Perform baseline medical tests andnecessary medical treatments.

18. Considerchelation5. 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 home6. 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 IVIG7. 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 & corn11. Continue education: DAN! Conferences and othersLAST 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.


Reid said...

So glad you are going to keep up with this. I can't imagine how hard it is, but what a wonderful resource for other parents, plus a great outlet for you and a chance for the rest of us to gain some insight and understanding. This is what a blog SHOULD be.

I read this fascinating article in Vanity Fair last spring about Michael Burry who made millions off the subprime mortgage crisis. Sounds... um, dull. But the relevant point is that he didn't find out he had high-functioning Aspergers until he was in his 30s. I'm sure your reading list is a mile high, but this is a nice success story from an adult's point of view. His son also has it. The online version is only an excerpt. I believe there is also a book - The Big Short.

JB said...

I visit your blog from Sarah Q's, and I was glad to see an update. I have a son the same age as Jake. This must be very hard for all of you, but good for you for following your gut! I just wanted to say that as a Social Worker I have seen families have a lot of success "managing" AS. Finding it young and holding onto that sweet boy you know is in there will make a difference. Hang in there - please keep blogging - you never know who you might reach. I will be keeping all 4 of you in my prayers!
Bridget (The Preachers kid blog)

A Friend of the Internet said...

Hope for the future.

I'm totally new to blogs, and my blog has nothing to with my family. I simply click "next blog" and see what shows up. Yours came up.

I wanted to share with you. One of my sons, and my nephew were both Aspergers. I looked at your laundry list of issues and concerns, and it is oh so familiar. In both cases my wife and I, and my brother/sister inlaw, decided that the whole medical system was just not a way we wanted to go. Don't read that as a condemnation, I fully support whatever choices work for you. I wanted to let you know that both boys are doing okay as young adults. they are functioning. My son is 21 now, works full time, makes good money, also attends a university full time majoring in biology. He still has many issues, but once he is zeroed in in something, he flies with it, and excels at it. My nephew is 23, and while he had many struggles growing up, has found the routine and rigors of the military to be very rewarding. He's in the Navy, a nuclear technician on a submarine.

I just didn't want you to feel overwhelmed. I'm not an expert, I can't answer to the medical stuff. I can only say that the future is not grim, it's bright. Actually very bright. When they latch onto something, it is with their whole being. It consumes them, and they can completely outperform those around them. They are geniuses at what they do.

Be of good cheer. A difficult, uphill path, leads to a spectacular view. (You learn that hiking!)


Sarah Q. said...

that was a beautiful, heartfelt post. Thank you for sharing. And I think Jake is pretty cool little boy. When he comes over to our house I love that he takes an interest in some our favorite treasures - cool things that we've found and kept because we love them too. Hugs to you and the fam as always.

Anonymous said...

I think you are making a mountain out of a molehill.

KIm said...

I hope things have gotten better for your family lately. I came across this post while searching for Asperger's and AETNA. I was hoping (though I knew inside) that AETNA would be on board for helping asperger children get the care they need without breaking the banks of their family. My son was diagnosed in December 2009. I still loose sleep, still wonder how this became our/his life, and worry so much for his future. He is in 2nd grade now and those struggles that I worried about for his future are starting to show up now. Isn't it all so hard? This is the 1st time in months I have been on the internet looking up asperger's. I just needed a break from it and that makes me feel guily. I just wanted you to know that there is another mom just like you up late tonight wondering about their childs future.