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.

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.

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. :)

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.