Friday, July 4, 2014

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!! 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"? 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. 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 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 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. 

Tuesday, July 23, 2013

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, 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,

Sunday, June 16, 2013

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.

Monday, October 1, 2012

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 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 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.

Monday, July 23, 2012

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,


Saturday, May 19, 2012

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.