Home business, home education and health challenges: what makes us tic?

Posts tagged ‘autistic’

Taking a step towards diagnosis

aspie=awesomeI’m sure you’ve noticed a recent (subtle) focus autism spectrum conditions and how they affect individuals in the real world. The reason for the focus is that we’ve begun to suspect that most of us in our family are on the autism spectrum. Goldilocks and I, in particular, show marked Asperger’s Syndrome traits.

I’ve been researching the traits and challenges of autistic individuals for the last 4 – 5 years, and this research has given me a tool set that I can use in dealing with the girls in the most effective ways possible. It has also highlighted the coping mechanisms I’ve developed personally since childhood, in order to “blend” into what people think of as “normal”. The great thing about these coping mechanisms is that I can share them with Goldilocks and Red Riding Hood. When they face challenges that neurotypical individuals do not, I have a whole treasure chest of resources available to equip them to deal with just how confusing life can be.

An added (and unexpected) bonus is that I feel more free to be me. I no longer feel the need to conform to certain incomprehensible social mores. Or, if I do, I understand why I do, and am better equipped to do so successfully. This is turning out to be the case with my darling girls, as well. And I find that when we work through our home education programme, if I approach them with my “Aspie Goggles” on, my expectations are moderated and their responses and progress makes more sense.

In other words, this particular label suits our family. It helps us. There’s just one problem: officially, the label doesn’t apply to us. Not yet, anyway. Never one to take a doctor’s word for a final diagnosis, I decided to do comprehensive research and
beta testing” before I made it official. And I have. I am ready for the challenges and all that remains is a medical diagnosis. Even that is not a necessity, but it does make it easier to explain things to people. For instance, I’d love a band-aid to apply to social circumstances when the girls won’t engage, make eye contact, or give an acquaintance a hug or kiss. I’ve never forced them to do those things, and they’re not being rude when they refuse to do them. But it would be easier to have an “official” reason why when we’re dealing with others. A diagnosis also gives us access to support groups, places where we can safely ask our questions and share our experiences. Without an official label, we’re just interlopers feeding off the challenges of others.

This week we took a huge step forward. Based on the recommendation of friends of mine in the autistic community, we spent part of Friday morning with Action in Autism to begin to clarify my suspicions. The results are positive: the counsellor I spoke to agrees with my assessment, and has made an appointment for us to see a diagnostician early in April. We’re one step closer to having an official name for our super powers. Huzzah!

I stumbled across this video this morning, and the young lady presenting it eloquently describes just what it is that makes Asperger’s syndrome, and being an aspie, so awesome. Her words certainly mirror our experiences, so I hope you’ll watch it and find out a little more about what makes us tick.

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Curiouser and curiouser: interesting theories on ADD, migraines and digestive issues.

Goldilocks and Papa Bear both have ADD, apparently. It not much of a surprise – there are long lines of it on both sides of both families, after all. When Papa Bear was in school, there was no such thing as ADD, of course. In those days he was simply told to “apply himself”, and that was that. Nowadays, between research, technology, advanced medication, overcrowded classrooms and curricula that seem to expect way too much from teachers and pupils alike, we have a different solution: medication.

I must admit that before we had the option of home education, we did go the route of medicating the problem. The results were marked and mixed, and not the subject of this post. However, the final result of all of that was to find a different solution. As you know, a large part of the drive behind creating this blog was to document the pathway to that solution, so that I wouldn’t forget it.

First of all, I can say unequivocally that home education is the best possible solution for my little family. It is ideal for our temperaments and thought patterns, as well as (surprisingly) our hectic lifestyles.

But there’s more to education and a lifestyle of learning than simply how you get your basic facts into your head. What with innumerable allergies and intolerances, and a family history of epilepsy, cystic fibrosis, diabetes, cancer and chronic migraines, I’ve always been interested in what we eat and how that affects us. I may have mentioned the wonderful supplements we take, which have done wonders for our health and energy. But even with a completely gluten-free/dairy-free lifestyle, and the world’s best nutritional supplements, we still have ailments. The girls and I all battle with gastric cramps and the attendant pleasures that go with that. We get headaches and blurry vision. Sometimes it’s hard to concentrate, and Papa Bear has the added distraction of being very, very tired all the time.

Furthermore, Goldilocks and I both twitch. In both of us, it started out as chronic, though barely noticeable, blinking. It progressed from there to forehead and cheek twitching and has gained an added dimension: vocal tics. I won’t bore you with the details but, simple put, we make sounds. I’ve been doing it for years so when Goldilocks started I knew what it was. I was disappointed for her as I’d hoped it was a stress-acquired thing in me and in no way genetic, but I could fully understand what she was going through. The sounds she makes resemble throat-clearing, and have become more and more obvious. Eventually one evening Papa Bear lost his temper with her and insisted she stop. Not understanding how she could control it for brief periods, only to be driven to do it even more prominently later, he assumed she was doing it on purpose, albeit subconsciously.

Shocked at his dramatic reaction, I realised it was time to act. I spent most of that night researching “chronic compulsive throat clearing in children“. The results were astounding. I discovered that tics of all sorts, from minor to major motor tics and a wide range of vocal tics which essentially comprise passing air through the nose or mouth in different ways, were all related. These are more prevalent in people with OCD or ADD of even degree. If two or more motor tics and a vocal tic are present, and if these present before 18 years of age, the correct term for the condition, no matter how mild, is Tourettes.

Huh.

I had actually been told this before, but since I didn’t think much of that particular doctor, I’d dismissed it out of hand. Now, however, I was faced with rather more concrete evidence.

Having already booked a doctor’s appointment to investigate my permanent thirst and frequent visits to the bathroom, I decided to bring this issue up there and settle it once and for all. And whaddya know. Tourettes. Both of us. So that was interesting. (The other symptoms appear to be linked to an overdose of coffee rather than anything more sinister, since I am in perfect health in every other way (besides gastric issues) – apparently two to three pots of filter coffee each day is not an acceptable average. Go figure.)

Since then I have been researching the various treatment options for Tourettes. (In short: none). It’s not serious or life threatening. Mild cases don’t even impact your quality of life in any significant way, bar teasing at school – enter Home Education! And of course it has no impact on intellect since the majority of Tourette’s sufferers have above average IQs. Well, I could have told you that :).

I have also been researching ways to perfect the gluten free lifestyle since I do still have a lot of complications with this. For instance, my weight has plateaued and nothing shifts the slightest gram. I have chronically bad skin, which is frustrating given my advanced years. I cramp and bloat and all those other lovely dinner-table topics we don’t like to discuss in huge anonymous fora like these. I stumbled across something called the SCD diet – have you heard of it? Now, that is the topic of a whole post on its own, and this one is already rather long winded, so no more on that here. What fascinated me about it, however, was the link between SCD and autism, with a huge number of parents of autistic children recording amazing results in their children’s health on this diet.

Hmm.

The lady who works for us is a genius and bona fide genetic scientist. She is also dyslexic and mildly OCD, so when she was studying genetics at university, she did a lot of research into the link between OCD, dyslexia, ADD (which her brother has) and genetics. Turns out: there’s a big link. Apparently any damage to chromosome 21 cause these neurological (not psychological) problems. Mild damage causes mild problems (very minor OCD, manageable migraines, etc), while the more damaged the chromosome is, the worse the results, until you get severe autism. This can be caused by birth complications, genetics or vaccines. (I am not a scientist, I’m simply repeating the results of a LOT of reading. Obviously, I may well be wrong here. I’m just saying it’s interesting). But with a family history of ADD, ADHD, OCD, epilepsy, dyslexia, migraines and now Tourettes, it certainly gives one pause for thought. Surely there must be a link?

Even more curious: how can a diet developed specifically for managing digestive issues have such a significant impact on both autism and ADD? I can’t wait to dig deeper and find more because it really is fascinating stuff. I’ll share what I find as I go along (this might be a good time to suspend your membership if this is too dull!).

 

 

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