See You Again...

It's still hard to believe it's been 23 years this month. My husband, an electrical engineer working for the federal government, had a new thing he wanted to show me, and he seemed excited about it. I was a new mother, exhausted, stoned on medication and trying to keep up with the demands of a two-month-old, but I decided I'd humor him and allowed him to show me. It was this cool thing where people could communicate all over the world through the computer. He showed me where there were "bulletin boards" for any discussion topic at all, and I curiously noted the one for "Parenting." Being a rookie at "mommying," I started to explore it...and I was hooked. 

It wasn't long before I ran across some health boards, and I eagerly posted to an epilepsy forum. Then I looked and was disappointed that there was no hydrocephalus board, but I looked through the "other" board, full of miscellaneous posts about various medical issues. Lo and behold...there were some hydrocephalus posts!!

I started reading through them. Most of them were from parents whose young children had "hydro," but then I saw a post that really caught my attention. It was from a woman in Ohio who had two young daughters. Darlene was 31 and had been diagnosed with hydro as a newborn, after being born three months premature. 

 

I excitedly wrote back, and in the days that followed, we instantly connected. We messaged each other, called each other and talked about everything imaginable. It saddened me that she had so much more difficulty with hydro than I did, and I tried to support her as much as I could from afar. She was also a great support to me with my son's autism. We learned we both loved the same music and sang duets over the phone countless times. In the summer of 1997, we met in New York for the first time. We would meet again about 14 years later, in Illinois. I never would have imagined that an online friendship could become so emotionally intimate.

 

Dar's health was always an issue for her. She had constant severe headaches, was legally blind, and had great difficulty with memory as time went on, but we stayed closely in touch as she moved around several times.

 

Then one day in January this year, I logged on to my Facebook account to see a note from her daughter. Dar had been suffering from upper respiratory symptoms and had gone into the hospital when she began to have trouble breathing, and she suddenly stopped. My sweet friend was gone at only 53 years old.

 

The day after Dar's death, I awakened with a song in my head. Nothing unusual about that; it happens all the time, but this one, Carrie Underwood's "See You Again," is one I never really cared for because of the heavy pop arrangement. I'm a country fan--mostly traditional--but I started thinking about the song and then looked up the lyrics. I suddenly caught my breath as I read them. She seemed to be speaking to me through the song. Now, whenever I hear it, I sing it loudly, for her, and it may be strange, but I feel her singing it with me.

 

Today, July 2, would be her 54th birthday. I have been in touch with one of her daughters since, and I thank God for Bethany. She is my connection to Dar. I miss my "sister" so much that my heart is breaking as I write. She showed me how to live with frustrating and debilitating health issues, and with courage and grace. I miss her with every breath. Fly high with the angels, Dar-lin'.

 

 

In loving memory of Darlene Ann Lewis Sweetman (July 2, 1960-January 23, 2014)

I'm BA-ACK...With a Few Hard-Earned Words of Wisdom

So, yeah...I haven't written in quite awhile, mostly because I was sick of being sick and was sure everyone who bothered to read was sick of hearing about it. I am relieved and happy to say I have finally turned a corner!! I still have to take a lot of...stuff, and it's time-consuming as hell, but I'm getting better, which certainly makes it worth it to do all I have been doing.


There have been several good things in the past year or so. Not only have I discovered coconut oil to be my best non-human friend, but I can honestly say now that I'm confident I'll live to 50. That isn't that much longer, but time was when I honestly thought I wouldn't--really.


I have learned some invaluable lessons over the past nearly 8 years, the biggest of which is that all we hear about the female "change of life" being a simple transition is sheer bullshit. Here's a warning to all women under 40 and anyone who loves them: Be prepared. Research. Listen to your body. Think outside the box...and NEVER, EVER blindly trust anyone, even a doctor. Now that I know what I know, I am not only much wiser and more...educated and informed, but I am also trying desperately to heal what was done to me by someone who has no business treating women over 35 for hormonal issues. The sad fact is that, like any medical specialty, gynecology has its "sub-specialties," and sadly--frighteningly--many really don't know...what they don't know.


One of the biggest fallacies about menopause is that we...just suddenly sink into it. Wrong...so wrong!! For most of us, it will be a gradual process...and for some, like me, it will be a slow descent into hell. I am a bit less scared of what 50 will bring than I was even a year ago because I have toughened up and learned. A lot of people I know online think of me as a tough chick who knows what it's like to be completely betrayed by some very incompetent doctors and probably figured I wouldn't ever be misled again. I'm sorry to disappoint you if you really thought that, because my back was turned, again, and I am now learning from it.


So...don't we just "go on hormones for awhile, and it'll be all better"? Umm...no. NO. NO!! For one thing, we have been lied to...big time. So many women, and even their doctors, think we just need estrogen for awhile, and life will be good again. I thought that. That's what I had been told, so I did it...and it was the biggest mistake of my life.


Okay...so back up a minute. What really went wrong? How did I become so sucked into thinking life would be so good once I got onto estrogen? Because that's what we all hear. That's what our mothers were told. That's what our doctors were told, so that's what we are told. Therein lies...the big lie. The fact is that estrogen and progesterone both decrease during perimenopause--yes, perimenopause, aka the long, slow train to The Big M. Perimenopause occurs when hormonal balance becomes unbalanced--estrogen, progesterone, thyroid hormones, etc. Progesterone actually falls faster than estrogen does.

For some, it can be a relatively simple transition, but it can be very sneaky in how it starts and progresses. I woke up one day, soon after my 40th birthday, to horrible fatigue; dry scalp, skin, and hair; cold extremities, weight piling on, horrible bone and muscle pain, and dozens of other symptoms. It would take months--months--to see an endocrinologist. The good news was that she promptly figured out what my problem was, even though my labs lied like a damn rug: I had a very sluggish thyroid, so I was put on a medication for that, and within 4 months or so, I felt better in many ways, but something still wasn't right. She then discovered my vitamin D was almost zero. A normal level is 35-100!! So, we worked hard at getting it up for over two years. I was slowly getting better.


Then, suddenly, I was starving--all the time. I literally couldn't even stand up unless I shoved protein down my throat about 15 times a day. I knew my blood sugar was crashing; it had crashed all my life if I didn't eat on time, and it would make me horribly and very suddenly sick--lightheaded, exhausted, clammy, weak, and with a brutal headache--just what I needed with hydrocephalus! It was then discovered that I had Celiac Disease, which is the body's severe autoimmune reaction to gluten, a protein mainly found in wheat, barley, rye, and oats...so I had to learn to eat all over again at 41. I did, and I have become amazingly good at it...but I was still very sick. It has had some great benefits, though, including one I never suspected: Being gluten-free has stopped over 40 years of seizures!! Who'd'a thunk it??!!


About this time, I had timidly agreed to going onto hormone replacement therapy. I was too sick to even think of it at the time, but I began to have a multitude of serious problems right after starting it: complete inability to sleep...at all; moodiness; confusion; awful brain fog; frustration; horribly dry and itchy, crawling skin; dry, gritty eyes and other membranes; nasty pasty, peeling, burning mouth...and a multitude of other symptoms. I then changed epilepsy medications, and suddenly, I had horrible heart racing, heart pounding, constant sweating...I was sure I was going completely insane. I started to take over the counter medication for my symptoms when it dawned on me that the new symptoms might be hyperthyroid. They were the exact opposite of what I'd had when my thyroid was horribly low, and fortunately, my endo quickly figured it out. She took me off the thyroid med and suggested I see if I could get my seizure med lowered or changed. I did...and I seemed marginally better for awhile, but some things were much worse. I wanted to rip my mouth off. The peeling, blistering, and bleeding was unbearable, and I was constantly scraping at it with my fingernails because the sensation was too much for someone who'd already had a lifetime of oral sensory issues.


Mercifully, I had been hearing and reading a lot about Candida Yeast Overgrowth, which is often an issue with autism, and we quickly determined I had severe oral thrush--a yeast infection of the mouth. I went on an anti-fungal medication and tried very hard to combat it. I learned to eat plain yogurt--the most vile shit ever--because I wanted so badly to get better. I took probiotics as diarrhea made my life a living hell. I would WIN. I had to...but it would be a long time before I felt significant improvement.


Then, after my HRT had been changed at least a couple of times, my cramping, moods, exhaustion, and confusion got worse. I had very irregular, horribly heavy periods. I went back to the gyn and begged him to look inside me. Lo and behold: several fibroids. I then asked, mostly seriously, if he could "just take it all out," and at first, he mentioned my 70-lb weight gain over two years, but then he started to mortify me by suggesting that if I looked like the 22 year-old, size 4 med student who was with him, I wouldn't have to be concerned with the associated risks from the weight gain.


Well, I mustered every cell of my being to keep from throwing him through the nearest wall, but it was the excuse I needed to look for another doctor. I spent the weekend looking, after I had nearly bled to death when he had abruptly yanked me off the hormone pill, and I found a highly-recommended doctor across town. I called and made an appointment...and got in for almost 3 months later, but when I walked in, she took one look at me, said I was estrogen dominant, and I had to get off the HRT immediately. Long story shorter: I was very lucky I didn't have any number of gynecological cancers, diabetes, heart disease, and intractable epilepsy from the severe imbalance.


There was great improvement for awhile, but then I slowed down a lot. I researched thoroughly and asked a perimenopause group online about their experiences with progesterone cream. After seeing no significant reason not to, I started it. I used it as directed and was slowly improving, but again, after several months, I thought I should be better than I was, so I kept reading and researching and decided I had to increase it again. Over several more months, I increased it steadily and am now on it 4-5 times a day...and I'm getting well--at last!! My Candida is no longer systemic. My thrush is minimal. My Ambien actually lets me sleep all night. I am eating again.


I have also recently increased the coconut oil to four times a day, and I'm noticing that the horrible muscle pain I have had since getting off the estrogen is getting better. I'm not having constant hot flashes. I can think. I still have a lot of weight to lose, but I think now that I can probably lose it if I continue doing what I'm doing. My life is finally coming back, but I had to learn the hard way that so much about what was happening to me had resulted from severely incorrect medical treatment. If it can happen to me, it can happen to you. Advocate for yourself. Question anything that doesn't make sense to you. If you're getting worse with treatment, another approach is necessary, and the sooner, the better. It can mean the difference between life and death. 

An Amazing Young Man

Nineteen years ago today, I became mother to a beautiful baby boy. It had been a horrible pregnancy, so this was it. He was my second and final child, but my life was complete. I had a daughter and a son. Nothing more was necessary.

 

I couldn't possibly know then just how much he would change my life. So often, we hear that autism is a "devastating" diagnosis, and we hear a lot about "curing" it. To that, I must ask: "Cure what?" Sure, I would love for him to be able to go through life without struggling to tell me what's going on inside his head, but I'm grateful for what he has. He can speak. He can communicate. I often feel the need to prod him for more detailed information, especially when it's important that I know, but that's a fairly minor thing. He has a sweetness about him that I doubt I'd find in a "typical" child his age. He's honest to a fault, and...it can lead to awkward moments, but he is also polite, kind, caring, and--yes--loving and empathetic. He knows when we're upset, and the thing that saddens me is that he so often takes the blame, even when he's been repeatedly told that what we feel has nothing to do with anything he's done, or hasn't done. He strives to please. I have never deliberately impressed upon him the need to be "perfect," but he seems to be extremely disappointed when he makes mistakes or does something he thinks will make us less than happy. That's what I find to be the most difficult thing about being his mother. It's not the "stimming." It's not the spontaneous "babbling" or talking on (and on...) about his imaginary friends, celebrity's cars, or whatever his fixation of the day happens to be. He is autistic, and he will tell you that. He wears his autism like a badge. It's "AWE-tism." He's proud of it, and he should be.

 

There are many amazing things about my son. He has a great sense of humor, and even when we burst out laughing at a time when he doesn't expect it, he doesn't show embarrassment or seem annoyed. He likes the idea that he can amuse us, even when he doesn't try to.

 

He also has a keen ear for music, likes to sing, and can find his way to anywhere, from anywhere. He gets the singing interest from me, but certainly not his direction sense! If I am ever confused about which way to go (which occurs daily!), he can direct me, even from somewhere he hasn't been in years.

 

We also hear that autistic people aren't affectionate. Pardon me, but...BULL!! How many adult men still kiss their mother every night before going to bed? Mine does, and he initiates it. When I'm sad, he knows, and he is distressed by it. He'll hug me and assure me that everything will be okay. When we came home from an appointment years ago that didn't give me any answers, I broke down after walking into the house. I said I was sad because I didn't know how to help him, and he said, very matter-of-factly, "It's just me. I'm just Andrew."

 

Yes, my sweet son. You are Andrew, and you are a miracle in my life. Thanks for being my greatest teacher and inspiration. I love you with all of my being. Happy Birthday.

 

Love always,

 

Mom

Andrew's Big Day!!

So, for the past several years, I was anxious, and yes, even scared, thinking about what path my son's life would take. As I mentioned awhile ago, we recently obtained legal guardianship. It wasn't something I wanted to do, but I knew it would be necessary, since he is still, at almost 19 years old, unable to make basic decisions for himself regarding his finances, education, health, and social relationships without close supervision and guidance.

It's been a relief to have the process finally over and done, but of course, there is more ahead. For the past several months, we have struggled with his post-high school services. College is not an option, although who knows whether or not it ever will be. We knew we had to prepare him for employment and managing his life as an adult, with our guidance. We have always pushed for as much independence as possible, which will probably include some sort of part-time employment. He receives SSI (disability income), but he is capable, we believe, of some sort of work a few hours a week. He could never support himself, but the skills can be taught, and I think we can find him something he enjoys doing, too. It will fill his time and make him more productive.

In the past several months, the question, of course, was whether or not he could enter some sort of vocationally-based higher education program, and we worked hard to prepare him for the one that seemed to be the best, and which he wanted most: Transitions Academy. This state-run program would be funded by the school system and allow him to increase his independence and work ethic.

Long story short, we weren't able to place him there. We had to have the school system's blessing, and...well, we didn't get it, so we have worked to find a suitable alternative. The school kept pushing theirs, and...anyone who knows me knows I have fought tooth and nail to get him educated for the past 10+ years, and we were counting the days until he'd be finished. In fact, every day--no kidding!--he'd say anxiously: "I'm almost done with high school." I think he craved more, too.

So, we managed a compromise. He would finish his academics this year and attend the school's "transitional" program part of the time, and some hard-core vocational instruction next fall with a state-run agency. He had to be present at the meeting, and he protested--rather adamantly--that he was going to the Academy. The brilliant agency program coordinator insisted there "wasn't room," and that we would try to prepare him to enter it the following year. That seemed to satisfy him...mostly, but I also insisted to the school that he really believed graduating ("walking" with his class and receiving a Certificate of Completion so he can continue to access state services) meant he was truly finished with high school, so, I proposed, we should look at a date to prepare him to "transition" out of the school program and enter, full-time (25 hours a week) into the agency program. Finally--some agreement!!

So, we had to prepare him for "graduation." This meant completing a Senior Project, which entailed research, a written and oral presentation before a panel of judges, and evaluations from each of them. His PASS therapists and I worked very hard (although I have to say that they--one, in particular--did about 99% with him), and we all wondered how he did. A teacher involved with walking the kids through what to do reported that he did "very well," although I wasn't permitted to be there, so I had to take her word for it.

Then came June 12th--graduation day. He had counted the minutes! We sat in the local community college field house, eager to see him accept his certificate. Liz and Kim, his PASS therapists, were there, too, and we all saw him go up onto the stage. Then, a couple of days ago, I discovered his Senior Project binder, containing his evaluations from all of the judges. He basically made an "A," although they were graded "pass/fail." Only a couple comments were made, of 24 points on which they were judged, indicating "below average": eye contact and voice volume.

I won't lie; there were some tears, and there still are. Sixteen and a half years ago, I was honestly terrified that there was no hope for my son's future, as all the books out at the time said, but I also knew that the same had been assumed about me in all the published literature of the '70s...and even much of it today, because of the medical issues I live with. I got very little help, so why shouldn't I hope for him? I did, I still do, and I'll never stop.

Andrew, I love you so much and am so proud of all your accomplishments. Keep going, Sweet Boy. You amaze me every day with what you can do.

We...Are...Guardians!! Bump, Ba-Dump, Bump, Bump, Bump, Bump!!

I have to admit that I have mixed emotions about this day. I am so relieved we have done it, because now our son is protected; we can continue to do what we need to do for him without any legal conflict.

In reality, though, it involves a concession of sorts. It's an admission of defeat...in a way. After all, we are to raise our kids to be self-sufficient adults who can stand on their own in the world. We knew the day might come when we would have to provide legal protection for him in his adulthood because he could lack the judgment to properly care for himself, and I tucked it into the back of my mind while I frantically and desperately tried to help him prepare for that responsibility. We want, as parents, to think that is a realistic expectation for our "high-functioning" kids.

Sadly, we don't always have that control, no matter how hard we work to achieve it. A lot depends on our child's capabilities, resources, and our ability to follow through with recommendations and services, and some of it is just...how it ends up. I know my son has made tremendous progress, and his development is not done with him yet. I am often asked if I ever see him as being able to (fill in the blank). I have always said I don't know, but I hope so, because I have been assured by so many autistic adults that, at barely 18, he isn't even close to where he'll be in 10 years...or even one. I remember being the same way. I know we have different issues, but no one could have predicted when I was his age that I would be where I am in life now. I know better than to impose limits...but I also know how important--how crucial--it is to put into place proper protective measures to ensure he has the best possible chance at living a happy, healthy, productive life. I'm fortunate to be in a state that allows for a great deal of flexibility with guardianship; it can be as limited or as strict as is necessary, and it can be adjusted over time, according to his needs and abilities.

So, why is legal guardianship so important for a cognitively disabled adult? I wish I didn't have this story to use as an example, but it's a personal one, and it illustrates the need in a hauntingly frightening and convincing manner: I know someone whose 20 year old son thought his one shunt surgery in infancy had cured him. He got married. He went into shunt failure, and he died, because his wife had no idea what had to be done for him and why it was necessary to take immediate action. Because he was considered an adult in the eyes of the law, his pleading mother could do nothing. She had no legal power to do so. Believe me when I tell you how that has haunted me over the years, and how I came to realize how necessary it was to pursue guardianship as soon as possible once my son approached adulthood. I'm sure there are a lot of other equally terrifying scenarios, too. What if your 23 year-old has to have an infected tooth extracted and refuses? What if he buys a car and can't eat for the next several months because he has no more money? What if she falls in with the wrong crowd? These are all good reasons to have that power to make and enforce the necessary rules our kids may need as adults because they lack the judgment to avoid such situations.

Do all developmentally disabled adults need to be under legal guardianship? This is a delicate question and one best answered by asking yourself the questions above. Also, ask yourself if your adult child would oppose your seeking guardianship. Is there an "I'm 18; I can do whatever I want" attitude? I know a lot of "typical" young adults think this way and make mistakes, but most learn from them. If you know that your adult child lacks the ability to appreciate cause and effect--on any level--seeking guardianship is something to consider. Your child's doctors and a Guardian ad litem, appointed by the court, will help determine whether or not guardianship should be recommended. Any evaluations you have, especially a neuropsych eval, is also a good thing to have.

Lastly, how difficult is it to obtain guardianship? If your child is not objecting to living with you and having you oversee all aspects--or even just certain important aspects--of his life, and if the doctors and Guardian ad litem are in agreement, it shouldn't take much time. At our hearing, once it started, we were in and out within minutes. It also depends on all the above factors I just mentioned and how busy the court is, but hearing from the court within a week or two of the hearing is typical unless there are complications.

What complications can arise? If you or your spouse/significant other has a criminal history of any sort, you may have to go through additional screening. There is a background check to determine prospective guardian fitness and ability, but it's generally easy to pass if you have lovingly cared for your child and obeyed the law.

Last bit of advice: Breathe. I was so sure it would be a grueling process. It has not been, and if you are doing it, the court will likely see it as an indication that you want the best for your adult child. This is a legal step that is often necessary, but it feels good to have done it, too, because we can keep doing our job as parents, helping our children live their best possible lives.

To my son...

My son is 18 years old today. That in itself will take some getting used to. I know I'm not the first, or the last, parent to experience the "coming of age" of a special needs child, but when I think about it, it's such a miracle not only that he's doing so well, but that he's even here.

I was completely stunned to learn I was pregnant. I had a 2 1/2 year old daughter and honestly wasn't ready for another baby yet, but one was on its way. In spite of the surprise, I was happy. I was 27 years old, married over 3 years. The timing wasn't bad.

Then it started. A mere week after holding the blue stick in my hand, I had a grand mal seizure. It stunned me completely. It had been 6 1/2 years!! I had taken care of myself! Why did this happen??!!

The paramedics got me to the hospital, and the first thing I remember hearing was, "We have to check to see if you're still pregnant."

I was, but it was only the beginning. About 3 weeks later, my mother left my father after nearly 28 years of marriage to be with his best friend. I knew nothing about her plan to do this until after it was done. Then came all the stress of being expected to "take sides," which skyrocketed my already severe stress and shot my health down completely. I lost 20 lbs. in a month because I couldn't eat. I had bronchial pneumonia so severe that I could hardly breathe for half my pregnancy. We were moving several hundred miles north, where I knew no one.

Amazingly, through all of that, I steadily began to gain back and basically broke even by the time I went into labor. We were all shocked that my breathtakingly beautiful son was a whopping 8 lbs, 3 oz!

A mere month or so after he was born, I began to notice some peculiar behaviors in Drew. He screamed, cried, and violently squirmed when I tried to hold him. He fed well, as long as he was in his infant seat. He never cried unless I held him.

As time went on, I noticed he never babbled. I was told by our pediatrician not to compare my son to his precocious sister, who was practically born talking! Still, something wasn't right. When he did finally start making sounds, they were odd and repetitive, not as if he were attempting to form words. Ultimately, we got a small smattering of words, but in the midst of countless ear infections, he lost them all.

I had to stop breastfeeding him due to my own problems, mostly notably plunging blood sugar, and I continued to notice growing distance and inability to "connect" with Drew. I would call his name, and he would run off toward our busy street, never acknowledging me. He lined everything up. He screeched constantly and would grab my wrist, throwing it toward whatever he wanted me to give him. We had his hearing tested, but there was no indication of a problem.

Most alarmingly, from about the age of four months, his head began to grow rapidly. I could almost see it daily. It assumed an eerily familiar shape--like mine--bulging in the forehead and in the back. My heart stopped. Did he have hydrocephalus, as I did? I watched him like a hawk for any other signs--lack of coordination, falling, regression of physical ability, but there was nothing unusual except that scary explosive head growth. Despite my constant and terrified pleas to his doctor, whom I had told about my medical history, I don't recall my son's head ever being measured.

We moved to RI from CT in the fall of 1996. I was eager to have a fresh set of eyes and ears look at my precious son and determine what, exactly, was going on. I hated myself for it, but I was starting to see him as a "demonic problem child" who always found trouble as I had the audacity to sneeze, use the bathroom, or take a shower. Someone even suggested that he go with me into the bathroom during all of my "personal moments."

Grocery trips were my worst nightmare. Drew would grab frozen food right out of the cart and start eating it. When I scolded him and threw the box of chicken fingers back into the cart, people stared, pointed, and even shouted at me that I was a rotten mother who refused to control my kid. Then an angel--a former special education teacher--tried to engage him as I attempted to compose myself. She asked me if I had ever had him evaluated for autism. Finally, something to go on!!

After we moved to RI, when Drew was 2 years old, I had no luck getting hold of a pediatrician and finally ranted to my grandmother, who was nearby. She suggested I call the RI Hospital Child Development Center and insist on an evaluation for Drew. That was September, 1996. We got in for January 17 and 20th--a Friday and Monday.

By then, I already knew, but we had to have a diagnosis on record. Once we got it, my fear gave way to terror. What could be done? How would I ever manage my health needs with his--and not leave my daughter's completely in the dust?

What I didn't know was that there was help. He started Early Intervention and preschool. I frantically ran the errands while he was in school, often sacrificing the nap I needed so badly. The kindness of some neighbors who got my daughter from the bus stop after school if I ran late saved my sanity and my life.

Of course, my own health situation became complicated with all the stress. I had six grand mal seizures in two years--a lot, since at that point, I'd had only about a dozen since infancy! The most terrifying one was when I came to on the bed to the terror of thinking Drew may have left the house and possibly gone into the nearby busy street!

After EI, he was--we were all--given the best possible gift: in-home therapy to teach him all the things I had been unable to. Of course, we would have to follow up when his therapists weren't working with him. They started with simple goals, such as self-dressing, feeding, and speech. In less than six months, he was talking!!!! They were short phrases (e.g. "Drew wants milk"), and he used third person for a long time, but over time, his language improved, as did his other behaviors, including his outrageous tantrums.

Three years after his autism was diagnosed, we finally convinced our pediatrician to get an MRI of Drew's head. He had "grown into it" by then and was 5 1/2, but I specifically asked to know about any abnormal ventricle size. No hydrocephalus, we learned, but he had Chiari Malformation. I was terrified, because I knew exactly what it was. Several opinions later, he still hasn't had surgery for it and seems to have only minor and intermittent symptoms.

I won't lie; we have struggled--a lot--and he still has significant expressive language issues. He's also socially behind but learning every day. He has one more year of high school, and we hope to have him enter the "Transitions Academy" next fall. He wants to drive--we'll see!--and is more independent every day. He's learning to manage money, he volunteers at the local library, and he's learning the public transportation schedule and routes.  I think he'll always need for us to watch over him, but he's always growing--literally; he's six feet tall!--learning, and changing. I have no idea what he'll ultimately be able to accomplish, but I support him all the way. He has taught me more than I can ever say--patience, unconditional love, and complete acceptance, among other things, and so unlike I was at his age, he is self-confident and self-loving. He is also very affectionate and hugs and kisses me every day. How many 18 year olds do that to their parents??!!

Andrew, I love you so very much! Thank you for being my son and showing me how to appreciate what is important in life.

Love always and forever,

Mom

Proud Mom Moment: Drew Goes to Prom!!

I remember thinking I would never be able to leave the house with my son without coming back extremely exhausted. That's changed over time, but I never envisioned him going to a prom--with a date. Last night, that became a reality.

I also thought buying his clothes would be a nightmare. We got done--with Caren's help--in less than an hour. Drew surprised me tremendously. He cooperated well, his clothes look very good on him, and as I watched him leave with Amy, a high school friend of Caren's, I felt such a mix of emotions--anxiety, pride, and amazement. My son, whom I had, at one point, been afraid would never be able to be out of my sight, went to a prom, with a date. Sure, she was an old friend, but he's had a crush on her forever, and she's always been good with him and to him. Still, I was nervous because he was nervous. It was a "special needs" prom, but...would he script--loudly? Would he "stand out" because of his classic autistic behavior? Would his necktie bother him? What if it got too loud? Would he want to leave?

We took several pictures, and they looked great together. It made me hopeful that it would go well. Then they were off.

The whole time they were gone, I admit, I worried. I also kept trying to reassure myself. He was with Amy. He'd be okay.

He was. She even said she'd enjoyed it, too, and I have every reason to believe she did. Friday, May 18, 2012 was an amazing day. My son went to a prom, and he had a great time.

Purple Day and Why It's Important!!

I know it's been a long time since I last wrote, but honestly, there hasn't been much to write about. All winter, I was stressed and sleepless, but spring is here now, and with it, I'm seeing improvements in my health and outlook.

I'm especially excited about a universal event occurring tomorrow. It's known as Purple Day. http://www.purpleday.org/. This is an international awareness day for epilepsy. Since I have always had epilepsy, I think it's important to spread the word, but it's not about me anymore. I know too many people who struggle every single day for some semblance of normalcy in their lives, but because of seizures, medication effects, or damage to the brain from the epilepsy, they are unable to know what it's like to do even simple things for themselves without being at risk of severe injury--or even death. 

Yes, people have died from epilepsy. I know...I hadn't thought much about it myself until a few years ago. To me, seizures were a disappointment and always made me feel like crap--physically and emotionally--for a few days, but I always knew I'd be safe during them, I'd recover, and I'd walk on. They were merely a nuisance. I have several minutes of signs of an impending seizure, and they were almost always at night. Even when I was alone during them--a very rare occurrence--I could always get into the middle of the bed or even onto the floor. Surprisingly, many people don't have that ability. They get little, or even no warning before it strikes. This can result in any number of injuries. Death can also result from falls, injury to the head, or even cessation of breathing.

Another thing most people who don't deal with epilepsy don't know about it is that there are many types of seizures, and even types of epilepsy. I know many, many patients and caregivers who are far more educated than I am on the various types of both epilepsy and seizures themselves.

My best friend found out the hardest way possible when her infant son was diagnosed with a rare type that is even life-threatening. It's Infantile Spasms http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/, which actually don't look like much, but they usually occur in large clusters that damage the developing brain. Jimmie was, at one point, experiencing dozens per day, and they looked as if he were wiping his eyes. Today, he is almost six years old, but he's like a baby, unable to talk or convey his needs in any intelligible manner. When he was 20 months old, his IS progressed to the dreaded Lennox-Gastaut Syndrome http://en.wikipedia.org/wiki/Lennox%E2%80%93Gastaut_syndrome, which occurs in many IS children and is even more severe and harder to control. Thank God, Jimmie is responding well now to a multiple medication regimen and was actually seizure-free for over a year until he had a recent setback when withdrawing from one of his medications. He has also recently been diagnosed with autism, which Lacy and I both knew he would be, but now, we're hoping he can finally get some necessary services. He has all the same needs as a young toddler, even though his peers have learned how to tie their shoes and pretend with multiple playmates.

Sadly, although Lacy had some experience and knowledge of epilepsy, mine was about all she had to go on, and the biggest problem I'd had was medication effects. She met me about a year after I had withdrawn from the culprit and switched to one I knew worked better, but I still had some minor issues with it, and she'd only seen a single "grand mal" (or "tonic/clonic," as they are now often called) http://en.wikipedia.org/wiki/Tonic%E2%80%93clonic_seizure. In no way did it prepare her for Jimmie's struggle, although she knew to call me when he'd had his first spasms. She and I had met in college, and she'd seen me graduate (right next to her in line!). She knew I drove, was married, and had a child. In fact, when I had the one seizure she'd seen, I was pregnant with my second child. She'd seen a few of my smaller seizures, too--which I didn't even know were seizures until after my daughter was born, even though I'd always had them.

Would you recognize a seizure if you saw one? How about a Simple Partial http://en.wikipedia.org/wiki/Simple_partial_seizure (my smaller seizures, which are almost invisible to anyone who doesn't know what they're looking for)? If someone wandered, dazed and glassy-eyed, into the street, possibly making a chewing motion, even though they aren't eating, would you think it was a seizure? This is why Epilepsy Awareness is so important, too.

Another big reason to be aware of epilepsy is that the treatment, for some of us, is even worse than the seizures themselves. All anti-epileptic drugs (AEDs) can, and often do, have serious side effects. It's not uncommon to have concentration and/or memory problems from them. They are also known to result in potentially severe nutritional issues, such as vitamin D or B6 deficiency, and a common complaint is fatigue or "spaciness."

Like autism, epilepsy comes in all degrees and types. I am so mildly affected that no one would know unless I told them. Others have seizures of some type every day, and of course, there's everyone in-between. About half of us will never know the cause of our epilepsy. Some have many triggers, or things that set seizures off. A cause may be lack of oxygen to the brain from birth; bleeding in the brain from prematurity, injury, or stroke; or several other things. Common triggers are things like bright, flickering lights; sleep disturbances; hormonal changes; dietary sensitivities; illness (especially with fever); missing medication doses, or even season/weather changes. For a fair number of us, trigger avoidance alone can give excellent seizure control. For others, trigger avoidance along with medication gives us complete control, even of triggers we can't avoid, but for many, even avoiding triggers and taking medications doesn't help much. Some resort to surgery, where the origin of the seizure activity, such as a temporal lobe, is removed, and some achieve much better control as a result, but many have to stay on medications and may even experience frequent seizures, although the surgery can often reduce the number of seizures, or their severity/duration. Others find that a Vagus Nerve Stimulator (VNS) http://en.wikipedia.org/wiki/Vagus_nerve_stimulation, which works something like a heart pacemaker, helps them. For those for whom surgery is not an option, special diets, such as ketogenic (very high fat, no sugar) or gluten-free (avoidance of wheat and wheat products, barley, oats, and rye) are possible options. Others find that avoiding artificial sweeteners, dyes, or preservatives helps them have better seizure control. The hardest part of managing epilepsy can be identifying and avoiding triggers, or it may be remembering to take the medication as prescribed, especially if more than one medication is necessary, or several doses have to be taken throughout the day. In any case, it can be very complicated to manage.

It's also very important to be informed about recognizing epilepsy and various types of seizures so you know what--and what not--to do. Never, ever force anything into the mouth of someone having a grand mal/tonic clonic seizure. Teeth can be broken and even swallowed. The tongue cannot be swallowed. It may be bitten badly, but it will heal. Do not put your fingers/hands into the person's mouth or restrain them in any way unless they are in imminent danger of death or serious injury from falling from a height, walking into a busy street, etc. You can be badly hurt! Our movements are involuntary, and we don't want to hurt you, but during a seizure, anything can happen, so be calm, move any hard objects, loosen ties or scarves around the neck, and call 911 for any seizure over ten minutes long, if any serious injury is present, or if the patient is diabetic or pregnant.

So, please wear purple tomorrow in honor of anyone you know who lives with epilepsy or has died as a result of it. Epilepsy affects a shocking number of people--about as many as autism does--yet, like autism (which can also involve epilepsy), it is so sadly misunderstood. People who have epilepsy are just like anyone else; they just want to be loved and accepted for who they are. Thank you! :)

What I Have Learned From 15 Years As An Autism Mom

Well, it's here. Fifteen years ago today, my long-held suspicions were confirmed: my son was diagnosed with autism. He was 2 1/2 then, and I had been screaming, yelling, and begging doctors for two years to see that there was a problem and to help. Now we finally had a diagnosis, so why was I so upset? I was upset because there are some things I hate being right about...and I'll admit that my reaction was one of selfishness. After all, I already had my own hydrocephalus and epilepsy to contend with. How would I do that and add autism to the mix? What could be done for him...and for me? How would I accommodate the needs of my daughter, then only 5 1/2 years old?

When I first got his diagnosis, it was a Monday, and the eval was over the course of several hours split into two days--yes, a Friday and a Monday. All weekend, I was ready to pop!! The waiting was excruciating, to say the least, but now we knew, and it was time to figure out what it meant for him and for us.

Even today, I can't tell you how I have managed, especially since my epilepsy became quite ugly from all the stress in the early years, but I am also proud to say that I live in a state that has superior services for kids with special needs, particularly autism. Although I was still in something of a haze through our few months of Early Intervention, I learned quickly that we had excellent Home-Based Therapy Services (HBTS) at our disposal. I was also assured that Drew would respond well to them.

Even after we got started, my fear seemed to suffocate me. We were several states away from any family, knew few people, and were having to deal with something I had been told repeatedly was "rare." I know parents of newly-diagnosed autistic kids have a hard time grasping that, but yes, fifteen years ago, it was believed that autism occurred in only 1 of about 10,000 kids!! Even then, I knew that seemed to be false, but that was what I had kept hearing, so my pleas for help had fallen on deaf ears, even though my son wasn't babbling, was constantly running away from me, could not stand to be held, and would in fact even arch his back and scream whenever I picked him up...but I, mom of two, eldest of five, and babysitter since age eight, knew nothing. They knew everything, because they were the doctors.

Sarcasm aside, I was scared to death. I knew nothing about what to expect for him and his future. Even the first book I picked up, which was 8 years old at the time, spoke of extremely high rates of retardation and the importance of finding a group home or institution early. It also said that even those who weren't placed in "homes" were on several medications to deal with behaviors and were often very physically violent, not toilet trained, and that their issues often tore marriages apart. I had a multitude of fears about that, too. I knew all too well that medications could cause all sorts of side effects and reactions, and if he had any "invisible" effects, how would I know? He couldn't tell me.

I posed the medication question to his therapy staff and coordinator, who all said to give them six months to get Drew talking and then to determine if medications were still necessary. They did get him to start speaking in short phrases and simple sentences, and my worry slowly started to abate. I was able to communicate with him, and he could do so with me, although there were significant expressive language gaps and remain so today.

I remember thinking what a devastating diagnosis autism was, and I was told by a mom online (who knew personally) that it wasn't. I remember being shocked and hurt that she seemed to be blowing off my anger and fear, but I learned quickly that she was right. There are, indeed, many worse things. Yes, it has changed who I am, taxed my marriage, family life, and belief in myself. I would be lying to say otherwise, but my son is growing, maturing, and learning more every day. He can do so many things for himself and even plans to go to community college to "work with computers." I have no reason to believe he can't. He is increasingly self-sufficient, and although we still have to deal with occasional behavioral difficulties and outbursts, he amazes me every day with what he can do. If he's in the car with me, I never get lost--and I mean never!! He has a steel trap memory. He is friendly, polite, and affectionate. How many seventeen-year-old boys still hug and kiss their parents good night?

I know autism will always be inseparable from who he is, and although I winced for several years at the term "autistic," I do understand now when affected adults insist on using it, and that we not say that they "have" autism. I am learning to listen to all of them and help him become a happy and productive member of the community. I have attended autism conferences and am so grateful to all the adults who have assured and advised me. Temple Grandin, Tony Attwood, and Steve Shore (just to name a few) have been such an amazing asset to the autism community, and I can't ever thank them enough for giving me the confidence and reassurance that my son will, indeed, be happy and learn to make his way as long as I continue to encourage him. Most of all, I accept him and hope that others will, too, because I know first-hand how important that is when you have to deal with a disorder, disability, or medical condition. After all, I have personally lived that experience myself. If he is happy, I am happy.

Heaven has a new angel today...

I'm sure there are many new angels in Heaven today, but I personally know of one. Joseph Knight was only 19 months old, but I will always look up to him. In the past several years, I have become quite blase about my epilepsy because I have had enough seizures to know the drill--I have my aura (approximately 4 minutes) and then it spreads to become a grand mal seizure, something I have only experienced some two dozen times in my life, mostly at night in bed, but I know I will come to, recover after about 24 hours, and life will walk on.

Coincidentally, Joseph's death falls on the 33rd anniversary of the first GM seizure I can recall experiencing. I was not quite 12 years old, and I woke up with a sick stomach that gave way to heartburn, vertigo, seeing spots, and light and sound intolerance. Next thing I knew, a loud moan escaped me, and all went black.

I will never forget that fear--how I felt, and then the lost time as I awakened in the hospital. I would learn that it wasn't my first documented seizure, but that there hadn't been many before that, and after nearly 8 years, my parents had been hopeful that I had "outgrown" them. All my others had been blamed on shunt failure, infection, or fever, and I did have a fever with this one, but it was attributed to a surge in hormones, as I was in the thick of puberty, and I went back onto phenobarbital for the next 3 years.

Then I would spend time--about three years--off all medication, with only clusters of what we later learned were minor seizures at season change. They would often last for days, I'd have as many as 40 a day, and they made me horribly sick, but I always knew I'd recover, and I did. They weren't even much to see--some paling of my skin, movement of my eyes and an occasional twitch or shake of a hand or arm, for about two or three minutes. Then they would stop, until the next one, but when the offending weather front blew through, eventually my brain would stop whining and do its real job.

I was 25 before we realized these were seizures themselves, and that they might be able to be controlled with medication. Then we tried several meds before I finally gave up and decided I could live with them better than I could cope with side effects and reactions from multiple medications, but I thought I still lived well, so I continued on.

In the meantime, I made my way through high school, college, and a medication reaction after a breakthrough GM seizure that would change my life and teach me all about the importance of self-advocacy (mentioned in a previous post), but once I emotionally recovered from that experience and saw so much from others I found online who had been through so much worse, I became very grateful for what I had. After all, I had experienced enough seizures to know not to be terrified of them, and I could still live a full life. I learned to drive, got licensed, got married, had children, and walked on.

Then came Lacy's struggle with fertility and finally, Jimmie's birth. Life was happy, in spite of her mom's death soon after her wedding...until Jimmie's Infantile Spasms diagnosis at four months old, soon after she had called me about some peculiar and frightening movements he had been making. During the next nearly four years, I would watch his struggle, mostly from afar, and silently count my blessings while worrying for him and for Lacy and David. Finally, his seizures came under control, and my son's autism had become manageable, so again, life was good, but then I began to realize just how many people I knew who struggled every day with seizures and what epilepsy had done to their (and their child's) life.  Sure, I was okay, and I would be.

Then Gina died--suddenly. I examined my attitude again. We had reason to believe asthma had taken her, since she'd been found holding her nebulizer, but her post-mortem exam revealed that she had died from "a simultaneous multi-system shutdown." Had she really had a seizure and just thought it was an asthma attack? Nearly four years later, we still don't know, and we probably never will.

There have been many posts on my forums about SUDEP: Sudden Death from Epilepsy. I always thought it was rare, but now I wonder if it really is. I have read that it generally happens in cases of poorly- or uncontrolled GM epilepsy, but...is it always uncontrolled in such cases? How much risk do we all have?

For now, I am cautiously content to keep doing what I do, because my life is busy, and I can't sit and wait for the other shoe to drop, whether it be a seizure, worsening of my epilepsy, shunt failure, or anything else, but I was reminded today to count my blessings and always be aware that my life can change in the blink of an eye, and I owe that lesson to a little angel named Joseph Knight. God bless you, Little Buddy. Thanks for sharing your sweet, short life with me and teaching me what's really important in life.  Love, Liz

Five years ago today...

Five years ago today, my best friend had her first child, a beautiful baby boy. He was named James William, for both his grandfathers, and I knew he would touch my life, but it makes me breathless to think back on just how much he has.

To all appearances, "Jimmie" seemed quite healthy. He was basically full-term, a decent size and weight, and he seemed to be thriving. Then one night, I got a call from Lacy that stopped my heart. Jimmie was having some strange episodes, and as she described them, I grew sick. I was so afraid to tell her what I thought, but she had called me for advice and wanted to know: were they seizures?

I advised her to call the pediatrician the next morning and demand that 4 1/2 month old Jimmie be seen right away. She called later to tell me that she had an appointment scheduled with a pediatric neurologist who would confirm my greatest fear. Jimmie had Infantile Spasms, a serious form of childhood epilepsy that often results in brain damage.

Many treatments would follow, and for a time, they seemed to be successful at first, but then he would relapse, and his seizures began to change. They went from the "wiping his eyes" type movement I saw (several times a day) when I visited a few months later, to more obvious seizure-type movements and behaviors. Several combinations of medications were attempted, including ACTH, a steroid often used to treat them that has had some success, but at about 20 months old, Jimmie's diagnosis would advance to Lennox-Gastaut Syndrome, which meant his epilepsy had become intractable and was not responding well to medications.

Finally, late last fall, he was found to have had a growth spurt and was given a dose increase of one of his medications. Since then, he has had no known seizures. That's the good news. The bad is that all the seizure activity has resulted in significant cognitive damage. He is slowly starting to advance in development again, although his 2 1/2 year-old brother, Charlie, is way ahead of him.

I was actually the one to introduce Lacy to epilepsy in the scariest way possible, when she witnessed one of my grand mal/tonic clonic seizures early in my pregnancy with my son, but in comparison, my epilepsy, also from infancy, has been amazingly uncomplicated and easy to control. It has even made me complacent, I'm sorry to say, and even when I had two seizures in the past 2 1/2 years, I was able to blame them on stupid acts on my part and walk on. Sure, I have known, at least on a casual level, that most people's epilepsy is more complicated than mine, but knowing Jimmie and his struggle has been very humbling. He has taught me all about courage and living for the moment, and I am so proud to say I look up to him as an example of how to live.

Happy, happy fifth birthday, sweet Jimmie!!!! I can't wait to see you, Charlie, and Mommy and Daddy!! xxxxoooo<3<3<3<3 LIZ

In Honor of Autism Awareness Month: Drew's story

It's hard to believe now that there was ever a time when autism wasn't a part of my life. It's been over 14 years since I learned of my son's diagnosis, and this after two years of begging, pleading, and arguing with doctors that I knew something wasn't right when he was a tiny infant.

I was also scared because he had been born with a normal-sized, normal-shaped head, but after about age four months, it began to grow very quickly, enough that I noticed a difference in its appearance in a matter of weeks. Even more alarming, it was starting to look like mine did in my baby pictures--wide, bulging forehead; bulging occipital (back) end. Even so, no concern was ever expressed by his pediatrician, and his head was never even measured, in spite of the fact that his doctor knew about my neurological history. I knew "hydro" was not generally genetic, and I am the only one (how lucky, huh??) who has it in my family, but...what if...??

As time went on, he began to "grow into his head," and it was less obvious that it had been large at an earlier point in his life, but...his behaviors continued to baffle me. He appeared to be deaf, not acknowledging my voice, especially when I told him to stop taking the frozen chicken fingers out of the cart while shopping, or even when he was proceeding to run into the street. He became a nightmare to take anywhere, constantly throwing tantrums or refusing to walk, and I was always trying to ignore the stares, glares, and (often loud) comments about my crappy parenting skills. Through all of this, I was still "assured" (read put off) by his doctor that "he's just a boy," "boys develop differently," "you can't compare him to your precocious daughter..." etc., etc. It simply didn't matter that I lived with this child--not any of them--and that, as the eldest of five, a veteran babysitter, and mother of another child, I had a good idea of what was "normal" and what was not, and I knew that something was "off" with my son, though no one else seemed to notice.

A breakthrough in my frustration would come at the grocery store one day when Drew was about 18 months old, and, as usual, getting into the food and driving me to tears of despair. In a sea of shaking fingers and heads, comments (and loud accusations) of "Why won't you get control of that kid?" a savior came forward. She was a middle-aged woman who was, she said, a retired special education teacher. She engaged Drew, talked to him, tried to get him to smile, and then said that she "didn't want to pry," but had I considered getting him evaluated for autism?

At that point, I had a much better idea of what was wrong as I went on to read--voraciously!!--about autism and its classic behaviors. It would be another year before I would succeed in getting a diagnosis for him, and we would endure several more months before truly useful services would start, but I would learn that he was, indeed, a smart little boy who caught on quickly and thrived in the therapies he was given, in spite of another diagnosis he was given at 5 1/2: Chiari Malformation, which is the protrusion of the cerebellar tonsils in the lower back of the brain. Chiari can also aggravate the issues he has with autism, such as sensory integration dysfunction, expressive language difficulty, and processing issues.

Today, I went to a meeting at his school to discuss getting his Office of Rehabilitation Services (ORS) paperwork started so that he may some day be employed. I still don't know what he'll do, and it may be a long time before we know how well he'll manage, but I still have hope that he will attain some degree of self-support. He amazes me every day and changes, grows, and matures constantly. While I think life will always be a struggle for him, I also believe he can make his way. Autism doesn't have to mean despair and fear. There is hope. I know. :)

Purple Day, and My Best Friend's Birthday

Lacy has been my best friend...forever. It's actually been just over 20 years, but honestly, I can't remember much about my life before I knew her. We have been through so much together.

We met in college, when I was recovering emotionally from the scariest medical mess of my life. I'd had a reaction to an epilepsy medication for over 2 1/2 years until I finally figured it out for myself and insisted on being taken off of it. She was there every step, although she essentially had to take my word for it all, since it had occurred before we met, and I hope I have done even ten percent for her what she's done for me.

I gave Lacy a crash course in epilepsy and seizure management when she lived with me a few years after graduation. My daughter was a toddler then, and I had just learned I was pregnant again. I had just returned home from the store as she walked in from work, and we were talking as she helped me put everything away.

Suddenly, I felt my familiar aura roll through me, and I suddenly realized this one was for real. I was about to have a seizure on the hard kitchen floor. She sprang into action, trying to close the dishwasher and keep my daughter away from me so she wouldn't get hurt. Since I was pregnant, too, I needed immediate medical attention.

How she survived all of that and didn't run away screaming, I'll never know. She did move out soon afterward, but only because she'd finally saved enough to get her own place.

We lived together for a total of about a year and a half before we had to move way up north, and she found other roommates. We stayed in close touch, and she eventually moved to the midwest and married. I sang a solo at her wedding, and it scared the hell out of me, but I was so glad I could help make her day special.

Lacy had always planned to have children, and since she was 35 when she and David married, she had to start trying to conceive soon. It would be difficult, and she ultimately required medical intervention, but she finally had a breathtakingly beautiful baby boy on June 23, 2006.

Just a few months after Jimmie was born, she called me late at night and told me she was scared that he might be having seizures. She and I had also co-founded a support organization in college, so she had learned a lot about epilepsy, including the fact that there were many different types of seizures. I advised her to call her pediatrician immediately the next morning and insist that Jimmie be seen right away. I couldn't make myself say that they sounded like infantile spasms, which I knew could indicate a very serious type of childhood epilepsy, but she would find out quickly for herself.

Jimmie would undergo several combinations of medications to achieve control, including B6 and ACTH, which is normally used to treat IS, but the control was short-lived, and his IS developed into the dreaded Lennox-Gastaut Syndrome. LGS is an intractable form of epilepsy that results in neurological damage. Although finally controlled for the past 4 1/2 months, Jimmie has severe developmental delay and is much like a one-year-old. He also now has a two-year-old brother, Charlie, who is learning to be a help to his mommy.

Lacy's birthday is tomorrow. Tomorrow is also Purple Day around the world, to raise awareness for epilepsy. Neither she nor I could ever have dreamed that she would need to have in-depth knowledge of epilepsy after she moved out of my house, and I feel like I can do so little, especially being so far away, but I do try to encourage her and cheer her and Jimmie on as he makes every accomplishment, how ever small it may be...and I plan to honor him and others all over the world tomorrow, March 26, by wearing purple...for her birthday, World Epilepsy Awareness Day. Please join me!!

So, it's been awhile...

I simply don't have enough creativity or energy to blog every day, but even I'm surprised that it's been a week and a half since I last posted.

There's a lot going on in my life that I have to learn about to help myself and my son live our best lives, and there seems to be no shortage of new avenues to study and explore. I'm not one of those militant moms who lives for a "cure" for autism, simply because I don't believe there is one and seriously doubt I'll see one in my lifetime, but new ideas and theories abound all the time, and although I find it all exhausting and pushed a lot of it away for a long time, I am starting to see the merit in some of it and even some great importance in why I must learn about certain aspects of what is being hailed by some as keys to "recovery."

Autism "recovery." The debate of the century rages on. Some are insistent and believe whole-heartedly in it, while others (mainly autistic adults themselves) are adamantly opposed to it and see it as sheer quackery. I'm somewhere in the middle, and only because I have recently discovered that I have some of the health issues that these proponents of "biomedical interventions" are so insistent can "cure" autism. I am not trying to "cure" or "recover" my son, but after the past four years of struggling against my own body, I now know that I have Candida overgrowth. This systemic yeast invades the intestine and flattens the flora, which are the structures that absorb the nutrients from the foods we eat. I now know that my flora are badly damaged from years of antibiotics used to treat acne and other maladies that subsequently made me resistant and, therefore, made my son resistant to antibiotics as well, largely because I was horribly sick with bronchial pneumonia through about 2/3 of my pregnancy and thus given copious amounts of antibiotics to cure me.

Of course, not a word was said about taking probiotics to preserve my digestive health...and it all came down on me years later in the form of several autoimmune problems. Due to all of that, and especially being sick during my pregnancy, it also left my son with a weakened ability to fight infection. A long string of ear infections resulted. I now also have an intolerance to a long list of foods...and I fear the same for my son. I already know he's gluten intolerant, as are my father and both my brothers, and he is about 95% gluten-free now. Symptoms he had like chest discomfort, reflux, and abdominal weight are gone now, and other things, such as constipation, will probably eventually resolve. I just hope to God he doesn't have Candida, as I do, and I am starting him on a precautionary probiotic to guard against it.

All of these are biomedical treatments that are touted to "recover" kids and adults from autism, but if he improves--particularly with his language ability--that will only be a bonus. I'm doing this because if he feels even ten percent as miserable as I did before starting this, it has to be done for the sake of his physical health. Gluten intolerance and Celiac Disease left untreated can lead to diabetes and cancer, as well as other serious health problems, so I know we have to be gluten-free. That's my only reason for doing this with him, but if some improvement in his ability to live his life independently comes of it, that's all good, too. 

The whole thing about being/thinking of myself as an "-ic"...

When I hear people use words like "hydrocephalic" or "epileptic" as a noun, it makes my skin crawl. This is a means of labeling that, to me, is incredibly self-limiting. Maybe I feel that way because I haven't had serious problems with either condition, but it just seems that it means that's all we are. I am a wife, mother, daughter, sister, friend, and "amateur" advocate. In terms of its overall impact on my life, it actually ranks fairly low. I do have ongoing effects that most others do--memory, concentration, and other common deficits--but I have so much to keep me busy that thinking of myself as defined by my conditions drags me down and leaves me with no energy to deal with everything I have to, so there's no time for it, plain and simple. How much better would we all feel if we looked at it that way?

I have noticed that I say my son is "autistic," and of course, that sounds hypocritical, but I was very uncomfortable with it for a long time and actually refused to say it until I was actually corrected by some adults at an autism conference. They explained that there is no way to separate who they are from their autism, and therefore, it is completely okay, and even preferable to them, to be referred to as autistic. I would eventually come to see that in the way they talked and thought. There actually is an "autistic" way of thinking. It's very literal and "black and white," unlike my thinking is with hydro and epilepsy, which is much broader and more "neurotypical."

UGH...there's another word I grapple with: "neurotypical." To some, it means "normal." To others, it means "not ______ (whatever they're talking about)," but it has mostly come to mean, in my online roamings, "not autistic."

Okay, so I'm not autistic, but "neurotypical"?? Surely, you jest!!  I think not! Hydro comes with its own idiosyncratic way of thinking, to some degree, but not in as limited a way as autism. This is especially true with Nonverbal Learning Disorder, which is a very common effect of hydro, and of which I have some slight shades. The difference is that I know that not everyone thinks the way I do, and yeah, I know it's weird. Most autistic adults have told me that they don't have that ability.

So, if we have more prominent NLD, are we more able to see ourselves as "hydrocephalics"? I'm interested in any and all input. :)