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 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.

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,

Mom

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.

Sunday, March 25, 2012

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! :)

Friday, January 20, 2012

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.