I want to tell you about the best free resource for autism I have ever used.
A log. No, not a piece of wood that has fallen from a tree, but a journal – a dated maybe time-stamped listing of activities and events.
Once I started using a log, I began using it for literally everything. The result – this moment is under control, and I am forward moving.
I hope it helps you.
Having read all the parenting books. I knew what to “expect.” At least I thought I did.
I expected that once the tally of ten fingers and toes had been passed, all would be well.
It is Hard to Find Resources
When I realized the extent of our issues, there really weren’t resources to help manage the big picture. And the resources we did have access to were not free resources for autism, or anything else for that matter.
Finding a provider for each issue was possible. Finding a way to manage ALL of it and fit it all together proved another matter entirely. Even more, staying on top of it while running a home, homeschooling, working on and off, and supporting my hubby proved totally overwhelming.
Bedtime for my girls was early because they would quietly go to bed, and because I desperately needed the break.
Being honest, I had no idea what I was dealing with and no idea how to begin to unravel it all. I also can’t tell you just how many doctors told me that I was managing just fine.
I hear that I am managing just fine a lot. I believe that one of the ways my autism manifests itself is that I always appear to be really calm, even when life is crazy and out of control. Both a blessing and a curse, looking put together keeps others around me calmer, but then again has been a barrier to actual real help on more than one occasion.
Borrowing a Free Resource for Autism from an Unexpected Source
Food allergies actually are what led us to a starting point and eventually to the path we are on now. No, I am not saying everyone has food allergies they should manage; I am saying our experience with food allergies led us to this tool, which though not our only tool, has become one of the primary tools that helps us manage everything – a free resource for autism.
Allergies are an issue at our house. Not life threatening ones, thankfully, but allergies that cause significant health and behavioral problems.
One daughter vomited profusely until we identified an allergy to fluoride, a supplement given to her by her doctor because we lived in an area where the water was not fluoridated.
Enter the log.
Give fluoride, produce vomit.
Remove fluoride, no puke.
Another daughter became violent whenever she took an antihistamine.
I personally lose my mind if I ingest chocolate. You can read about my struggle here in my post, “Autism, Chocolate and a Fire-Breathing Dragon.”
One of the girls even got so ill that she looked like a skeleton. People threatened to call authorities, and I found myself explaining to more than one person that medical care was being provided.
Eventually, a gastroenterologist diagnosed massive food allergies and sent us off to figure out what they were.
The allergist referred us to the gastroenterologist who referred us back to the allergist. We had come full circle. If doctors couldn’t figure it out, how could I be expected to?
Ever have one of those moments?
We did the common back-scratch testing and we did bloodwork, but if you really want to get to the bottom of food allergies — all of them — you keep a log.
Expanding the Use of this Free Resource for Autism Management
I had done this when I was younger. I did an elimination diet and kept a log, reintroducing foods to see what did and did not cause a reaction.
During this process, I identified a number of allergies to foods.
As our lives began to become complicated by more physical and mental health issues, I remembered the log.
Though tedious, the log works, and not just for food allergies. It proved a great free resource for autism and all the stuff that comes with it.
So for my young kiddos, we kept a log. We tracked everything we ate, all the medications we took, sleep habits, exercise, activities, etc.
We ate right, eliminating as much as we could and adding back in carefully and slowly. And our health improved. A lot.
But what I really learned from this experience was the power of a log.
As I said above, homeschooling four young kiddos with medical problems and supporting a husband in an MBA program was sucking the life out of me. There was no way for me to know what was going on and to be able to remember it and communicate it to others so we could get help without the log.
By that point, I had a kiddo in four to five types of therapy for low muscle tone, one with a speech delay, the skeleton I mentioned above and one with chronic sinus infections. Less than what we have now, but a full plate nonetheless. We found ourselves at the doctor at least weekly and sometimes daily. So we might as well admit that finances quickly became an issue. Keeping a log helped there as well.
In my efforts to bring health, peace, order and productivity to my home, I have found NOTHING more powerful than a simple, FREE log.
The Power of a Log
It provides you with DATA.
And depending on what you decide to track, it provides you with a lot of it quickly. Imagine a free resource for autism management and all the issues that come with it in a world where everything you are struggling with is depleting your resources. It won’t cure anyone, it won’t magically fix anything, but it will give you a way to pinpoint pressure points and with that information, you can work to relieve them.
It is the simplest tool imaginable to get you the information you need to have and that you may need to share with others (providers, caretakers, etc.) to get you to the bottom of an issue or conflict.
I found that the log worked for not just food, but for everything. It worked for exercise, sleep, food, relationships, finances, etc., because there are generally patterns to human behavior and if you are tracking health concerns, behavior, etc., then you can start to see the patterns.
I don’t know how often I got to the doctor without a log and did not have answers to the questions the doctor was asking. Life is busy and full, and there is no going back and just remembering whatever he needs to know.
An unexpected benefit, it helped me hold doctors and medical/mental health providers/therapists accountable. More than once, they did not put something in their records that I had recorded in mine.
More than once, we kept from repeating steps when switching to a new provider because I could show why we had taken our chosen course of action.
We have saved time, money, energy and more than that, we progressed faster because of a simple log.
In What Areas is This Free Resource for Autism Helpful?
So in what areas of our lives have we kept a log?
- Menstrual Cycle
- Behavior (meltdown avoidance!)
- Doctor Visits
- Therapy Sessions
- Goal Setting
How do We Analyze the Data?
We analyze the information in the log from the following perspectives:
- Five Senses Test – Ok, I don’t think anyone has created a test by this name, but it is how I try to evaluate mine and my daughters’ issues. I look at the problem using all five senses. Does it smell? How does it taste? How does it feel? What does it look like? How does it sound? Then I magnify or reduce each sense and try to determine if greatly changing the sensation could be overwhelming or grossly underwhelming, even to the point of undetectable.
- Internal/External –I think about whether the issue could be internal to myself or another or whether it is environmental. This takes into consideration the Five Senses Test above, but this prong helps me remember that changing the individual is frequently not the answer. Sometimes, for example, the problem is the environment, or a relationship struggle.
- Before/During/After/Future – I consider whether the trigger for whatever the problem or conflict is came before, at the time of, after, or is something that is being anticipated in the future. Food eaten several days in advance of a reaction can be hard to isolate. Anxiety, for example, over an upcoming event could be causing physical upset now.
- Input/Output – We look at what is going in and what is coming out. If the quality of our diet drops, we know to expect our health to take a dip. But it is more than that. What information has gone in and out? What relationship issues are possibly interfering? Are there conflicting needs?
Why Hasn’t Anyone Told You to Use a Log?
In all the years of tons of appointments, I have only had one provider ever recommend we keep a log and that was my allergist when I was a girl.
Other providers who have seen our log discouraged its use. Some of our providers have actually refused to look at the information in it. Those providers are not ours for long.
I expect our providers to care about what we do, what we eat, how we feel, etc. No, I don’t expect them to spend hours studying this really boring read, but if I have information I feel is useful, they are expected to listen to me.
Ok, so if it is so easy and so cheap, and by cheap, I mean free, why don’t more people use this tool, this free resource for autism management?
- Discipline and hard work – Nothing in life is really free. A log takes time and energy. The information does not appear by magic, you have to take time to record it. It takes discipline. If you have days you record and days you will not, it will not be very beneficial. Just like anything in life that is worthwhile, you have to commit to it.
- Anxiety – Keeping a log is much like a blood test. You want to know what is wrong, but, well, you also don’t. When a doctor orders a blood test, you submit because you have gone to the doctor with the intent to get better. Just so, you won’t take the time and engage in the effort to keep a log until you are ready for the results. A log will tell you the truth. Eating a dozen cookies a day or drinking four or five sodas and knowing you have done it is one thing, seeing it on paper is another. You have to be ready to face your reality. And more than that, you have to be ready to show it to others. You will have documented it. Holding yourself accountable is tough. Sometimes I start a log well and when I sort of see a pattern emerge that I don’t like, I am tempted to abandon the log and continue to live in “ignorance”. I really shouldn’t eat gluten and a lot of other foods, but do because I like them. Again, you have to be ready for the truth.
- Don’t know what to do with results – In my experience, our doctors who did not like the log did not like it because when faced with data, they did not always know what to do with it. It was outside their experience and the patterns frequently contradicted what they had been taught. I believe they preferred losing us as patients to having to deal with looking like they did not know something. We did have doctors who actually admitted this difficulty, but indicated a willingness to go forward and walk the path with us, or find us someone who could. Truly impressive professionals!
Autism and the Stuff that Comes with It Lends Itself Well to the Keeping of a Log
Again, don’t forget, the log does not produce conclusions. It produces data from which you and/or your providers can draw conclusions, determine next steps, rule out issues, etc. Yet, don’t underestimate the power of DATA.
Autism is a disorder that cannot be diagnosed by blood tests or brain scans, etc. It is diagnosed by observation and self-reporting (surveys of parents/patients), methods which lend themselves so well to the data in a simple log, again, a free resource for autism management. (Here is the story of my own diagnosis in my post, “Coming Home: The Clarity of Knowing my Confusion Stemmed from Autism.” )
In the context of autism, logs provide data which unveil patterns. A psychologist diagnosed one of my girls with extreme anxiety. Tracking the sources of this anxiety unveiled patterns rendering an autism diagnosis simple and clear.
We have gotten good enough at looking for these patterns that we do not always keep a log. We frequently find the pattern we seek just because we have gotten so experienced at looking for them. That to say, when we can’t quickly find the problem, we get out paper and pen and start tracking.
We have not found a faster way to get the data we need to move forward.
My encouragement to you today if you are need of a place to start organizing, to begin to retake control of your life, start your own log! It is a free resource for autism management.