As I stated in my blog My Life With Autism, we had a hard road to get to a diagnosis. Times they are a changing though, and people are getting better about recognizing the symptoms. I now live in a community with many options for early diagnosed Autism. Of course, as I mentioned before, they seem to stop caring after your child hits those tumultuous pre-teen/teen years. I am hoping to change that, but for now, back to our story...My son was hospitalized for a week to stabilize him with new medications, meds that he would be starting for the first time. If I could fast forward and see how long this process really takes, I would have laughed at the doctors who think a week in a hospital will do the trick! My son was put on Risperdal. I freaked out a little bit, at first, when I read that it was commonly used to treat Schizophrenia. It is also commonly used to treat other disorders, including some of the more unsightly symptoms of Autism. When my son came home, he was new and improved! I told him to do something and he actually smiled and did it. No fights. No tantrums. He just did it, and then he had the nerve to ask "is there anything else?" I'm thinking Stepford Wives, or in this case children, maybe Invasion of the Body Snatchers. I don't know what's gone on here, but there seems to be some sort of magic involved. My son just did something after being told, while smiling, and then asked if he could do anything else? Wow! Talk about miracles!Before I tell you how short lived this miracle was, I need to tell you how my son responded to it. I have always worried that psychiatric medicines would make him not himself. I had experience with my step-daughter's mom overdosing her on ADHD meds and she was a zombie on them. She literally would sit around my house as a child and all but drool on herself. Her mom didn't think anything was wrong with that, since it kept her kid quiet, but I was very disturbed by the effects. So, here I am faced with giving my son meds, and worried about him becoming something other than himself. I sat him down and had a real conversation with him. I remember writing about it on my Facebook at the time, because I felt it was the first real conversation I was able to have with him. I asked how the medicine made him feel, and aside from hungry, he said he liked taking it, because it gave him that little something that made him stop and gave him time to think about what he was doing before he did it. In technical terms the medicine works to stop impulsive behaviors, such as yelling no, running away, even screaming. He was able to take a step back and tell us, "I need to go cool off before we talk." YAY! That was our miracle. The first of many tiny ones. The medicine worked, my son wasn't a zombie, life was good... almost.One of the perks of the medicine was being able to see my son's sense of humor. He has an amazing grasp of things and is super funny. It is a trait that was lost in the misery of his disability. Seeing him laugh regularly at age 11 was amazing. Even more amazing, was that he was starting to grasp human emotion and concepts such as empathy. My first real hug from my son came around the same time. There were awkward hugs too, at inappropriate times. There were hugs that lasted too long, or squeezed to tight, or just felt weird. But - they were hugs - initiated by my son. That was the second tiny miracle. I am a huge fan of random hugs with my kids, and now I get them back from him as well. I won't go into the details of my family's inner turmoil at this time, only to say that it was explosive, emotional, and life changing. I felt as though we were finally making great strides in my son's progress only to have them hampered by other things that were going on. My husband and I split up and having nowhere else to go at the time, I moved to South Carolina with my family. Change is not easy on children, especially children within the Autism Spectrum. While my son had been in somewhat of a decline due to the heated emotions in our home before the separation, he went into a tailspin with our move. The defiance was back, with a vengeance, the moods were worse than ever, and to top it all off he couldn't stay focused on school work long enough to write his name on the paper, let alone attempt actual work. Part of this was an ongoing problem with ADD/ADHD, which his doctors still had not started him on meds for. The other part was because the Risperdal actually causes ADHD symptoms as a side affect. This is where you pull your hair out as a parent. What do you do? Are the side effects worth the benefits of the drug? Sometimes I thought yes, other times I thought NO WAY!Along with the Risperdal, which he was now taking 2 times a day, he was given Clonidine (which is a heart medication for adults). In children, Clonidine (small doses) helps with moods. And so it did. I was also told to give him 2,000mg of fish oil pills a day. Studies have shown that increased Omega 3s found in fish oil pills help improve symptoms for people suffering from issues like my son was. I encourage everyone to read about Omega 3s because they are a "super food." They help with your metabolism, heart, cholesterol, inflammatory diseases, the frontal lobe, memory, focus, & moods. This is a SMALL list! It expands exponentially. Anyway, so he takes those three pills every day. It's not enough because, after a while his moods were uncontrollable again. He would cry at the drop of a hat. He was failing nearly all his classes, including science - which was always one of his best subjects. My son was melting down time and again. These melt downs effect our entire family. He will cry, scream, flail about, and it's all someone else's fault. Our family was being beaten down by one boy's tantrums. Day in and day out. It's exhausting. I can't leave the house without having at least him with me at all times, because no one else can handle him. I have become a prisoner to my son. Imagine no nights out. Imagine never having that stress relief of being able to sit back and enjoy a movie with friends, a dinner, coffee... It's not easy and his dad would not take him to give me a break either. So, I've been stuck for the better part of a year with no time off from this nightmare. He's been stuck with me too, and we pretty much resent one another from time to time. I'm being honest here. Yes, it is possible to resent your child. It is possible to hate the lot you've been given, to curse the gods (whichever ones you pray too - if any), to throw in the towel in your own mind over and over. It is possible - I have done it. And then I start all over again the next day. I can't tell you the number of times I have packed my bags and headed out on my own, abandoning my responsibilities in order for one peaceful night! I do this in my head, of course. These are my daydreams - sometimes! Then I get right back up and keep living the same responsibility laden life I have.So, after tearful conversations with my son's therapist he was placed on Depakote, along with everything else, for his mood disorder (bipolar is now among his rather lengthy list of things that he has been labeled with.) Three months. That is how long we tried the Depakote. Three months in which we saw ZERO positive effects from it. By then, my son was in 7th grade. He scraped by and passed out of 6th grade somehow. I actually argued the fact that he should be moving on, but he managed to pass, not by much, everything except math. So, off to 7th grade and within the first 3 weeks of school this year, I was receiving calls from the school. We needed a conference because not only was my son not doing ANY work, he was sleeping through the first half of the day. That was the Depakote at work. That stuff had to go. And it did. It was replaced by Vyvanse for my son's ADHD.WOW! Vyvanse - an amazing little pill! An expensive little pill, but well worth it. My son is not a zombie - which was my biggest fear about ADD/ADHD meds. My son is wide awake, alert, and attentive. Within 2 days of him taking Vyvanse I was getting calls from his teachers. "Whatever you have changed, keep doing it!" "He's wide awake in class now!" "He's doing his work!" "He's making "A" grades!" The best part was my son coming home, actually talking about class. He still doesn't do his homework at home, because he claims he needs more help than I can give him - of that, I have little doubt. My son's grades last year were like this: science - 69; math - 50-60s; ELA - 60-70s. This year he has a high B in almost all his classes. I'm talking 90-91, with exception of ELA which is in the 80s. Writing is his severe learning disability, so that is to be expected. And still, 80s are a huge accomplishment because it's the highest his grade has ever been in that class - EVER! That is an amazing turnaround. On top of those grades comes the most important thing. My son has his confidence back.Things are not perfect! They will never be perfect. We are still trying to find a way to deal with the mood swings and tantrums that come with them. I don't know if new medicines will be needed, and I hope not because he takes enough of them. But I will tell you this, there was a HUGE difference in my son when the medicines were added. The worst side effect to date has been the increased appetite, and even that has balanced out. My son is not a zombie, because he has a parent and a medical professional who monitor to make sure he isn't taking too much medication. He has a great sense of humor, and is becoming an amazing student - finally! Without the medicine the potential to do well was just not there. Well, let me rephrase - the potential was there, but it was locked up and blocked from him. I don't think medicine is for everyone, but I do know that fear of the unknown is what holds a lot of parents and children back from going that route. Medicine for these conditions has advanced dramatically from the days of the zombie-children! My son praises his medicine. He came to me with a huge smile on his face when he held that first progress report of the year! I CRIED, because the words out of his mouth were priceless. "Look mom, I'm really smart like the other kids!" I had to tell him, "you've always been smart like the other kids, it was just hidden away for a while." On the darker days, I look to those fabulous moments of triumph. I remember that first hug from my son because he knew I was sad and that it would make me feel better. I remember the look on his face when he brought me that progress report, and I know that there is hope! Whether it is achieved through medical, therapeutic, and/or other ways - there is always hope of something better for your child, no matter what difficulties they have to overcome. I try to remember those things in our darker moments and it is not always easy. Our lives will never be described as easy! One day, maybe there is hope for easier, and that is what keeps me going. So, here's my word to the wise for those of you who have read these blogs and don't have to deal with this. When you see that frazzled looking person out at the grocery store, or that kid who won't stop screaming, give them a smile instead of your disdain. That small thing in their day, can make the difference between packing those bags and throwing in the towel and making it through another day! I have been that person in the store going, "my child would never behave like that in public." I ate my words when my son came along. You never know what hand you will be dealt, so count your blessings, be thankful, and smile instead! :) We all have our bad days, but even our worst days may not compare to someone else's!
I talk about my life with autism now and again. Sometimes it's just to get things off my chest, other times it's to help with awareness. Right now, it's because I've had a particularly rough week. So, here I am ready to pour my heart and soul out to people, in an effort to make them understand what this life is like.
I have four biological children, two boys and two girls, or as my grandmother would call it, a millionaire's family. (Too bad I didn't think of earning the millions first!) Anyway, my oldest son has always been the difficult one to deal with. I can take the other three together on their worst days and it wouldn't equal my son on a mediocre day. I don't mean to say this to compare my children for good or bad, it just is. I knew things were wrong with my son very early on. For the past few years I have explained to doctors that he had delays since he was 3 or 4 years old, but in looking back at his medical records - you can see where I was questioning the doctors about serious delays or behaviors before he was even a year old. I just know that things started getting really bad by around age 4. And sadly, I couldn't get medical professionals to believe me or take me seriously. My son, at 4 years old, would throw horrible screaming fits, and threaten to kill himself. As a parent, hearing that from such a small child, it was like having nothing I had ever experienced. It was literally as if someone cut me open and ripped my insides out. I started questioning everything. I called the doctor, again they didn't believe me. I would have to hold my son down to keep him from hurting himself when he got into his tantrums. He would claw himself, try to bang his head against things. I was there alone, with two other children. My husband was out to sea at the time with the Navy. When it got to be too much I would call my mother to come help me. She was astounded by my son's behavior, too.
There's another side to my son, though. He can be a bright shinning person when he wants to be. He charms the pants off of all the adults he meets. This is what made it difficult for me to get those medical professionals to believe me. It wasn't until my son started school and had a regular teacher throughout the year that I finally had someone else recognize that things weren't right. My son's teacher asked me one day about his behaviors at home. We sat and talked, and I explained to her everything that we had been going through for years. I explained how the doctors just sort of brushed me off because he was always good for them. This one woman - I owe her so much - she started the ball rolling on testing.
My son was in second grade by the time this happened. So much time had passed, where he could have gotten help. Where I could have gotten help in understanding how to better deal with him. I don't know whether to say luckily or unluckily here - but in any case - I had been working with my son on small things like eye contact, and other people's feelings. One of the "signs/symptoms" of Autism/Aspergers is not being able to make proper eye contact. Well, every time my son would talk to me or I needed to talk to him, I would have to grab his face and make him look at me. I did this for years, until we got to the point where I could just tell him "look at me" and he would. Yes, years. It takes years to train behaviors that come natural to people without this disability. Anyway, I say luckily, because I was inadvertently doing something that doctors would later train us to do anyway. And unluckily, because it made his diagnosis that much harder. It took a lot of explaining to doctors, that yes, we have had to train him to do that. Eventually, the public school system was to thank for my son's diagnosis. Although, it would still be a few more years before my son received any therapy or treatments. Why? The military doctors who we were shuffled through did nothing. I am normally one to praise military doctors, but in the case of my son, they let us down. While living in Key West, I don't think my son ever saw the same doctor twice. Try having to explain over and over again what the problem is, only to have different people tell you each time, oh, well, have you tried this? YES, as a matter of fact, I have! Doctor #4 asked me to try that, and Doctor #3 before him, and #2 before that. I felt as though I was beating my head against a brick wall. And sometimes, I think that may have been more effective.
Anyway, by the time he was in 4th grade and we had moved back to North Carolina, I again had a teacher approach me about my son's issues. He pushed the school to do more testing. They called in people from the TEACCH facility in Greenville, NC. They did a comprehensive analysis and changed my son's diagnosis from one of Aspergers to high functioning Autism plus learning disabilities in writing and math. What did the change from Aspergers to High Functioning Autism mean? Not a whole lot. They are basically the same thing. It all falls under the Autism Spectrum Umbrella (which is quite large). I also had an appointment made with a local therapist to do another round of private testing. When that was done, I was told he had PDD/NOS (Pervasive Developmental Disorder - Not Otherwise Specified), also under the spectrum umbrella. Along with PDD/NOS was a diagnosis of Oppositional Defiant Disorder (by now, my son was trying to run away every time we told him no about something and he was refusing to do anything we told him), mood disorder (possibly bi-polar), and learning disabilities, again in writing and math. The day of our last testing session my son got violent with my oldest daughter, going so far as grabbing a steak knife off the kitchen counter and threatening her with it. I had to wrestle the knife out of his hand, drag him to the car, and take him to the therapist. She wasn't concerned about this behavior. She simply finished up her testing, told us he would need to start some medicines for his behaviors, but that we needed to see a different doctor for that, and told us to have a good day. Are you a little freaked out by that? I know I was.
At that point, I didn't know what to do. I took my son to his school and sat down and cried to his guidance counselor about what was going on. She gave me some options, and told me that if it had been my younger daughter that he threatened, she would have called social services to have him removed from the home, but because it was my older daughter, she could take care of herself. Disturbing? You betcha! So, since we couldn't get anyone to help us we made the tough decision of sending my son to live with his grandparents until we could get him in to yet another doctor to try to get something done, medication, therapy, etc.
His living with my parents lasted all of a month and he was throwing tantrums, running away, and everything he had been doing with us. So, I went to pick him back up and brought him home. I took him straight to the pediatrician, explained what had been going on, AGAIN, and begged her to help us. Finally, we had a doctor who would listen. She got him set to be hospitalized for evaluation so medications could be started.
After a week he came home, on new medicine, and he was a different boy - for a while.
The second part of this blog will be posted tomorrow... find out which medicines helped, which didn't, and where we are with treatment today...
*A note - for the record - I am sharing my family's experience, because I hope that it at least has the potential to help someone else. Early diagnosis and treatment are key to giving these kids a decent chance at a semi-normal life. My son is locked out of a lot of treatment options now because of his age. This too, has to stop! Kids don't stop having Autism or other issues because they grow older - in fact - those issues can be compounded by age, hormones, etc. It is my hope that one day, things will change. I know they have already gotten so much better for the younger kids, but the system seems to be forgetting the older ones still! In the state of South Carolina a parent can get help with special therapy for their kids (play therapy/occupational therapies - help is needed because many insurances won't cover these things, despite the fact that they are essential), unfortunately there is an early age cutoff for this help. My question is why?
I have a new found love and appreciation for my thumbs! Having broken my right thumb yesterday, I have had to painfully explore how to open childproof medicine containers with only one hand able to grip anything. I am learning that getting my shoes tied is harder than I realized, and brushing my teeth left handed is a laughable task.
I feel as though I should write an ode to my thumb. Perhaps a memoir dedicated to all the wonderful things my thumb was able to do before it got hurt. In the end, I decided I would blog about the cause of said thumb injury.
As I have written about before, my 12 year old has autism. One of the key ingredients to making a happy home with an autistic child is patience. My son and I have been to many therapists, through many trial medications, increased dosages, decreasing, adding other meds... it has been a non-stop process to try to make our living situation an easier one. We have been working towards that better balance. He has been so much better. This time last year, his fits were so severe and we had to deal with him wondering off and "running away" when he didn't get his way. Fast forward to yesterday and there had been no major fits for a few months. When I say "fits" I mean kicking, screaming, someone has to hold him down so he doesn't hurt himself or someone else fits.
It takes a lot of patience to not make those situations worse. Yesterday's incident was, as I said, the first major outburst in months. It probably wouldn't have been as bad except for the fact that my patience were shot. Dealing with my soon to be ex-husband and his particularly vile approach to things he doesn't like had tapped my patience. So, when dealing with my son, I was unprepared and ill-equipped to deal with one of his fits. I also wasn't paying close enough attention to those kicks when he got me. While my son kicked my hand, it was ultimately my lack of patience with him that day that escalated things.
I have been dealing with my son's fits, mostly alone, since he was three years old. He wasn't diagnosed with anything until he was in first grade, despite my many attempts to get someone to help us. It turns out that some of things I did for him naturally, like forcing him to make eye contact when he spoke, were what occupational therapists would later say made it difficult to diagnose him. Sometimes I get it right, even though it hurt us temporarily with a diagnosis, it would be the same things doctors would tell us to do to help make my son better. Some answers come naturally. Other answers are harder to come by. Sometimes, with patience we can avoid the worst of it. There are times when outside influences wear you down so much that you can't find that calm space in your own head, let alone show your child how to get there.
I suppose this is a cautionary tale. Most people never see the really awful side of autism. They rarely, if ever, have to see the fits these kids can throw. They certainly don't understand that these children have no concept that what they are doing is wrong, or that added stress on their caregivers makes an already difficult situation that much harder.
My son is 12. I am trying to make sure he will be able to function as an adult just a few years down the road. I'm not a perfect person, as evidenced by my broken thumb, but I would like to ask that in this week you take a moment to think about how autism affects people. Think about having patience with the screaming kid in the grocery store, because chances are - he's not just a brat - there may be a deeper problem. As parents, we do the best for our children, but our best runs out when our kids go out in public. One in 150 children are now diagnosed with an ailment falling in the autism spectrum. One in 70 boys are diagnosed. Those are staggering numbers, and they are increasing. Until more effort is placed on finding the cause, we need people to understand, to have patience, and to just reach out to those families who could use a little more support. For some families, just stopping by to lend a hand or socialize for a while means so much, because they have become prisoners in their own home.
My son's future is bright, he can talk and make eye contact. He has learned over the past two years how to hug people, and when it's appropriate to do so. I know, it sounds like something so simple, but I still get teary-eyed when my son randomly hugs me because for the first 10 years of his life he never did. We are making progress. There will always be set backs, especially stress-induced ones. Hopefully there won't be any more broken thumbs.
In the meantime, I have that new-found appreciation for thumbs and a reminder that patience is a virtue! I also urge each and everyone of you to take a moment this Friday and Saturday, April 1-2, to help shine a light on Autism.
I am a mother of a 12 year old boy who has been diagnosed in the autism spectrum. We have been told that he has Aspergers and then again we have been told simply, Autism. What we do know is that he is different, then again, aren't we all. He is not alone in this world, but he is lonely. What he needs, what all the children and adults of this world who are faced with the challenges that Autism presents, is for more people to understand what he/they go through on a daily basis.
I am including a link to a very important letter, written by a blogger (a mother of an autistic child herself) to the President of the United States of America. I think her words speak volumes for those of us who live through this every day. I hope they inspire you to "light it up blue" on April 2. More importantly, I hope her words inspire you to step outside your comfort zone and learn a little. I have reproduced the letter here for convenience, but by clicking on the "Dear Mr. President" link below you will also be able to read the numerous comments that are just as important as the letter itself.Dear Mr. President,
I need your help.
Last year, on April 2, 2010, you issued a statement
expressing your support of World Autism Awareness Day. I appreciate the fact that you did that. Your support is vital to our community.
But I’ll be honest with you, Mr. President. I didn’t even see your statement until I really started digging around on the Internet last night. With all due respect, Sir, if I didn’t see it, I’m guessing almost no one saw it.
Mr. President, when you spoke to a parent of a child with autism
in a crowd outside Philadelphia in 2008, you spoke to me. When you said that your General Counsel had an autistic child and that one of your best friends in Chicago also had an autistic child, I leaned in closer to my screen. When you told that parent, “I know how fiercely you love your child, but I also know how hard it is, how much work it is for you and how much support you need,” I listened. And I dared to hope. I dared to believe that you might make things different for my little girl.
My daughter has autism, Mr. President. And you’re right; I love her fiercely. I love her with a ferocity and a tenderness that can only co-exist within a mother’s heart. I love her so much that there is nothing on God’s green Earth that I wouldn’t do to help mitigate her challenges. There is nothing that I wouldn’t do to make the world less foreign to her, less hostile. There is nothing that I wouldn’t do to ensure that every day when she steps outside our door, she is met with tolerance and understanding and compassion. That she is seen by the world as a full and complete human being – not as a set of challenges encompassed by a single word. There is nothing that I wouldn’t do to ensure that her talents and unique gifts are recognized, fostered and celebrated throughout her lifetime.
Above all, there is nothing that I wouldn’t do ensure that she has the opportunity to contribute to our great nation.
Mr. President, as much as it pains me to admit, these are not things that I can do alone. I carry my soapbox
wherever I go, but my platform is small. I need your help.
On April 2nd of this year, the world will join together in observation of the Fourth Annual World Autism Awareness Day
. As you know, this day exists because it has to. Because our children’s ranks are now growing in undeniably epidemic proportions. Because 1 in 110 children are now on the autism spectrum. 1 in 110. Please take a moment to let the enormity of that number sink in. The numbers aren’t getting any smaller. And someday mothers like me – mothers of 1 in every 110 children – will no longer be here to take care of our precious babies.
If our children are to thrive without us, it will only be in a world that understands them. The people that they encounter every day will need to know what autism is
– what it really
is – day in and day out. They will need to know how hard my baby works to communicate. How much time and support it’s taken to get her where she is now. How proud I am of everything that she has accomplished. How much potential she has. What an incredible human being she already is. How much this entire group of people has to offer our society if we are willing to see them – really, truly see
them, recognize them and include them in our communities.
On April 2nd, landmark buildings around the world will participate in a campaign to help shine a light on autism. They will Light Up Blue
as a statement of solidarity, celebration, understanding, compassion, and hope. They will light up blue to say, “We are here. We see you. We hear you. We support you.”
On April 2nd, I will change my porch lights to blue, Mr. President. And in so doing, I will talk to the ten or fifteen people who may ask me why. Ten or fifteen people will walk away that day with a new understanding, a new sensitivity, a new commitment to help make life better for children like my daughter.
Sir, I need your help. I need you to light YOUR house blue too. Because when you do, you will start millions
of conversations. Ten or fifteen million people will ask why, then ten or fifteen million more. And people like me – and thousands upon thousands of our friends – will be there to tell them.
Mr. President, I’ll be honest. We need a lot more than blue bulbs
. We need research and a renewed and reinvigorated commitment to real scientific inquiry and critical thinking. We need the money that you promised to fully fund IDEA. We need sweeping legislative change. We need a federal mandate on insurance reform. We need passage of the ABLE Accounts Act and a reauthorization of the Combating Autism Act. We need affordable and appropriate housing for our children as they transition into adulthood. We need the money that you promised to allocate to autism services, research and treatment. And far more.
It’s a heck of a list. And I get it; I do. Those aren’t things that you can do in a day.But what I’m asking you for right now is something that you CAN do in a day.
I’m asking you to help us begin a conversation in earnest. To light the fire of awareness in our nation. A nation where a mother dares to hope that when people talk to one another – really talk to one another – the world can change for her children.
This is blissfully apolitical. Autism is not partisan. It does not discriminate between black and white, privileged nor impoverished. It simply lands where it will and affects every aspect of an entire family’s life.
Your girls are beautiful, Mr. President. They are poised and confident, graceful and self-assured. You must be incredibly proud of both of them. I ask you, Sir, what if Malia or Sasha had autism? What would you do to help them? I’m guessing the better question is, Whatwouldn’t you do?
At the very least, I know that you’d buy a couple of light bulbs and help spark a conversation.
For my incredible daughter, and for the million others like her. For their mothers and fathers and siblings. For their aunts and uncles and grandparents. For their neighbors and friends. For an entire generation who will either bear the brunt of blind support or reap the rewards of full acceptance – acceptance that can only be born of awareness.
Please, Mr. President. We need your help.
Jess, Proud mother of two beautiful girls and author of Diary of a MomDiary of a Mom
*For more information on Autism Awareness and what you can do to help, go to www.autismspeaks.org