Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Saturday, February 20, 2010

The Road Less Traveled a.k.a. There are Weeds Here

Today is Saturday, February 20th, 2010. I want to mark that day because it is today that I decided to throw out all conventions of motherhood toward teenagers.

You see, I have two of them (one 13, rapidly approaching impossible, and another 17, who already shows the blithe unconcern of a 19 year old - such a prodigy!) But, while that sounds completely normal, the truth of the matter is that both of my lovely boys will be with me for some I better get used to them.

The oldest, though showing rapids signs of the 20-something self-centeredness, has autism, and at any moment, well, at regular moments throughout the day, gets the whole world wrong. I don't mean he says something cute and autistically-eclectic. I mean, he doesn't get whole concepts, like the idea of weekly shopping and the four food groups. Now, mind you, he is trying. We started him recently with a student Paypal account. He has his little credit/debit card, and the world smells like microwaved Hot Pockets. But, we are working on the concept that the Quickie-Mart is not a great place to shop long-term and that he, too, can purchase vegetables.

Some mothers may think, "huh, is that all you have to worry about?" Yes and no. I realize many of my other Mom friends with autistic children have MUCH BIGGER issues at hand. But, I am talking about the hand I was dealt, and I struggle with the idea that his only favorite food for going on 15 years is pizza.

But, in the spirit of "I have got to make this better or I will explode," we have decided to supplement his "diet" with a huge, horse-pill vitamin/mineral/every-other-thing-you-are-supposed-to-be-eating supplement.

I am out for some peace in 2010, and watching a 6'2', 114lb boy eat yet another pizza pocket (because he had money, now!) is not going to destroy me. I am trying my best to keep his arteries clear and his blood sugar levels stable. Good thing, my dear son has a fear of being sick, so random Yahoo! news announcements of the latest food study help a great deal.

Now, my youngest son is not quite so easy or humorous.

We are faced with the prospect that the only way to teach him may be through special education, homeschooled over many, many years. Now, again, some of my readers may mutter, "Big deal, we have been there since day one!" I have not.

My youngest was nearly skipped from pre-school into first grade. He rapidly took on more advance work (twice he was put in advanced math) until the age of 7-8. From there on, we saw the steady decline in memory (retention and recall), comprehension, speech and language skills, and so many other abilities, I need a school specialist to explain them.

What happened? I do not know. Somewhere along the line (hindsight being 20/20), my son is more comparable to a mild Alzheimer's patient with a Traumatic Brain Injury (TBI) than just a struggling, slow learner. I just order several resources from and Lash & Associates Publishing. It is my own little resource section as we attempt to tackle high school with no IEP, only a very weak 504, and the possibility of home-schooling due to him being too fatigued to go through even a moderated schedule.

From what I can piece together is that since the viral attack at 2, and what everyone thought was a seizure at 3, my son has been set up for this decline. Undiagnosed moderate sleep apnea, dysautonomia, Chronic Fatigue Syndrome and a couple of good hits to the head (first one at six years old) and we have my youngest son; home-bound and needing 24-hour support. Not the support of someone wheelchair bound, but support nonetheless. There has to be a schedule for eating, sleeping, taking medicine, bathing and every other daily task. Without it, he can become a smelly, disheveled teen with bad breath and bags under his eyes.

According to one neuropsychologist, my son has no short-term memory. He lives in a world of moments. And, those moments are not easily recalled, even after being experienced.

Any of you familiar with dysautonomia understand the crushing fatigue, the stomach issues, the lightheaded feelings, the fog. We also have two sleep disorders, sleep apnea and one I call Broken Circadian Clock Syndrome, major memory deficits and a persistent inability to see the whole picture. I know that doesn't sound medical, but until I get a better term, I am stuck with always picturing the blind men, touching an elephant and declaring it to be something completely wrong. Imagine that in English, Science, World History and Math. Imagine a brain that does not process analogy or comparison. Imagine only have memories once in a bluish moon. The rest of the time, you live in an angry attempt to make sense of a world of which you are no longer a productive part.Imagine a brain where all of what I just talked about will be beyond recall two weeks from now.

That is my youngest son.

No one has ever answered my question. How do you teach a child who cannot remember? Is it really learning, if the concepts are gone in two weeks? The ability to master is there, but without the ability to recall, we are stuck in a loop of constant relearning. It turns ESY (Extended School Year) programs into (LL) Lifetime Learning programs.

But, remember, this is the year I make it easier; on him and my poor, constantly-grieving heart.

Starting in the summer, we, he and I, will embark on the most different kind of home-schooling program I can afford. Videos, movies, animations, trips and audio will replace 100% of the books. I know that sounds radical, but that is what works, and as a disability awareness guide (my own term, thank you!), I am out for what works. Not another frustrating year. We know that his procedural memory is relatively strong, so he must do things with whole body, over and over again. I welcome any suggestions from the home-schooling online community. This is uncharted territory for us. I am flying blind (no pun intended) here, but I intend to finish with a child who has some purpose in the world, even as someone has to remind him to comb his hair and brush his teeth.

So, today, all well-meaning friends who have children who are doing well, please understand if I don't share a lot. I am on a different road. One not everyone can handle and master. And, I intend to do both. Brilliantly.

Thursday, January 28, 2010

We Are One People

A friend of mine today was worried and sad. She had to go through a physical exam and a mental illness exam. She was so afraid that she would be labeled "mentally ill." Once she wrote this, I began to realize that she was reacting to a quiet discrimination leveled at people who suffer with mental challenges.

How many people hide their co-morbid emotional and mental challenges as they deal with more visible physical challenges? How many people don't seek out care and support because they need a physician of the mind?

Part of the disability movement that I am so excited about is the attack against accepting the labels, the pity, and prejudice leveled at persons with disabilities. Here was a person dealing with fatigue, skeletal issues, governmental programs for the poor and she was afraid to be labeled "mentally ill."

It is my hope that the community of persons with disability will continue to break down barriers, especially the ones that exist within our own ranks.

Below is a portion of my reply to my friend. Her user-name has been changed to protect her privacy.


I just want to say a word or two about mental illness. Please bear with me.

Many people are discriminated against in our "health care" system because they need physicians of the mind. It is okay to miss a whole limb, but don't be anxious or depressed. There is a stigma attached to mental needs that I am making part of my mission to attack. My husband has depression, general anxiety and dissociative identity disorder. He suffers with mood swings (for which he takes medicine) and with his epilepsy, may deal with mild short-term memory loss. He lives in mortal fear that someone will discover all this and fire him or not want to be friends with the family. His own family verbally abuses him by calling him names (coo-coo, nuts, idiot, etc.) He lived a miserable life until I came along. We are not perfect, but I love him and have tried to help him in every way I can.

There is no shame in needing mental health support while you try to build up your physical health. I credit the short-term support I received in giving me the mind-set I have now. Don't allow anyone to judge who Blakely is by what mentally or physically challenges you.

You are a wonderful soul, and need support. Period.


This goes for everyone. We are all wonderful souls. We need support, whether we have a physical, mental or invisible disability. We are one people and cap(able).

Tuesday, January 12, 2010

Lemons, Lemonade or Someting Else?

Lately, I have been listening to many motivational speakers and coaches. As part of my goal to begin public speaking in 2010, it is important to get to know who is in the industry and what people are saying and how they are saying it. Part of my nature is to observe, take notes and draw conclusions based on my own experience. For the most part, I love what I hear!

There are so many great people out there, making it their mission to help others. It is uplifting, encouraging and yes, motivating.

Throughout my audio online visits, I kept hearing a certain phrase over and over,

When life hands you lemons, make lemonade.

I personally don’t like that phrase. Why?

Because, it is so limiting.

As human beings, we have the potential to create so many things with our lives. Our minds are capable of creating ideas that eventually turn into products, companies, movements; forces beyond what the original thought intended. When I hear that phrase, I envision people squeezing the difficult parts of their lives into a container, adding sweeteners, and then, trying to enjoy the finished product. Somehow, that is not appetizing. Nor do I think it is practical.

I decided to do some research on the lowly lemon. What I found blew my mind away!

That one fruit is part of our lives in so many ways, most of us are not even aware of it.


  • make furniture polish

  • strengthen our immune systems

  • purify our blood

  • stop bleeding from a cut

  • aid our digestion

  • create cosmetics and skin products

  • flavor foods

  • kill bacteria

  • keep other foods from spoiling

  • Lemons are non-toxic to children, pets and the environment

  • The scent of lemons is invigorating and refreshing

So, how did this wonder plant get the negative connotation of being attached to a bad or broken thing? How did such a plant with so much potential become synonymous with adversity, loss and failure? Maybe some scholar would like to chime in with a comment, but the source I read believed it began as a metaphor arising from its bitter taste.

I can see it. Something that tastes this bad CAN’T be any good! It is obviously not a good thing? Or can it be? We see from it uses that lemons are good, even though they taste sour. So what do I take away from this?

Here is my thought for you today.

Take a look at those sour, bitter experiences in your life. Examine those failures, losses and adversities. Perhaps, they can create so much more than just lemonade. Perhaps they can purify your intentions. Perhaps, they can clean away the bacteria of doubt and denial. Perhaps, they can freshen up the recesses of your mind with a clean, non-toxic attitude. Or keep some part of you from spoiling in decay. Maybe there is more that adversity can do than make a sweet drink that you will try to swallow.

So, do you still want to just make lemonade? I don’t.

I don't claim to know how or why we are given the losses in our lives. I don't claim to like the bitter taste of adversity. But, the next time you feel you have been given a lemon in your life, don’t just mix a drink.

Plant the seeds and grow lemon trees. Sell the fruit to companies, the juice to chefs and the skins for furniture oil. Clean your house. Color your hair.

Find out how those lemons in your life can become so much more than what they seem.

Lemons are Not Just for Lemonade: 31 Uses for Lemons and Lemon Juice

Online Etymology Dictionary