Medication / The Preschool Years

No, Our Son Doesn’t Have Leukemia. He’s Autistic and Took Dexedrine

Polaroid beach Teddy

Medicine. Good grief. It’s the topic I have yet to mention, even once, in the 14 months I have been writing about Ted and our journey with Aspergers.

Until now.

For eight years we put prescription pharmaceuticals in our child’s body.

There.

I said it.

And for eight years we wondered, did all those syrups, pills and patches do the least bit of good.

In Ted’s case, and since this is my blog, I can say it as I think it…

No.

I don’t believe any of the medicines we gave Ted, really, truly were any help, and quite possibly, they may have been detrimental. Moreover, I do not believe those who prescribed his medication really, truly, although well-intentioned, had any idea what they were doing. Ted’s experience with the prescribing of medication was at best, guess-work.

That said, I can’t go back and do it differently. Instead, I accept what we did because, well it’s over now and we can’t change it, but at least I can share with you some of the experiences we had and our lessons learned.

It all began in 1995. What a year. I was pregnant with our second child and frantically trying to find a professional who could tell us what was happening with our 3 1/2-year-old son. Well, the baby came before the diagnosis. Meg, our daughter, turned five months old on the day, November 30, 1995, Ted was diagnosed with Aspergers.

He was four years old and it was a week later, in December, that our eight-year pharmaceutical journey began.

Kate was our nurse practitioner and my autism go-to person. She referred us to Louisa, who diagnosed Teddy, and she also got us to an occupational therapist, speech therapist and physical therapist. For a while I even had private sessions with her to help me cope with the stresses of raising Teddy.

It is not with a dose of over sentimentality that I say I loved Kate. I did. Nor it is an over exaggeration to say that she helped save my life. She did. She was always there for me. She listened, she understood. She had the perspective I needed to get through. And she knew all too well the challenge I was living, for she too lived it having a teen-age daughter with Prader-Willi Syndrome. So when she looked at me the way she would look at me, with total and complete understanding in her eyes, and when she nodded her head as she read my “Teddy Updates,” I knew the nod came from that place only mothers who have lived it know. And there was no better comfort than talking to Kate about what ever it was happening with Teddy and even when we moved a state away, every four months, Ted and Meg and I made the 10 hour round trip to see Kate for med checks. And even when we finally did move on, and finally found practitioners in our hometown, when it really mattered, when I really needed to know what was happening, it was Kate I trusted and to Kate I returned.

The first medication she prescribed for Teddy was Dexedrine, a drug often used for ADHD, which along with Aspergers, anxiety and OCD was part of the string of diagnoses longer than Ted was tall.

Dexedrine is a stimulant. I remembered a friend in high school who used it to lose weight. So I asked Kate about the logic behind giving a hyperactive child a stimulant. Seemed a fair question. The short answer was that in children with hyperactivity it can have the opposite effect, it can actually be calming for them. Seemed a fair answer.

Besides, I had heard the word calm.

That was an adjective I had never once associated with Teddy.

A calm Teddy.

Now that would be something to see.

So he began taking Dexedrine.

Fast forward seven weeks to one evening in mid January, 1996. We had put the kids to sleep, Meg in her crib and Teddy in his bed, in the room they shared in our two bedroom apartment. Neal and I then stayed up a few more hours, enjoying those sacred kid free hours you treasure when you have little ones. The house was quiet. I remember it was a quiet evening. I remember that because of what happened next.

When it was time for us to go to bed we went into the kids’ room to check on them. Teddy wasn’t in bed. We looked around the room and there he was, under Meg’s crib, faintly illuminated by the outside street light, with a pair of blunt-tipped scissors in his hand and his NY Yankees baseball capĀ on the floor in front of him and filled with his hair.

Unable to sleep, for two hours he had sat under the crib, quietly and calmly cutting off all his hair. Huge patches of hair, to his scalp had been cut off. And yes, blunt-tipped scissors can cut hair.

I was horrified.

If this is calm I thought, I didn’t want any part of it.

The next day I took Ted to my hair stylist who had to shave off all his remaining hair. His beautiful, curly hair was cut off to the scalp.

And then to Kate we went because I refused to give Ted one more Dexedrine. We switched meds and thus the cycle began. For the next eight years when something happened, if he was aggressive, or couldn’t sleep or unable to cope, we would either adjust the dosage of his current medicine or start all over with a new med.

Our story of medication trials started with our four-year old, bald and underweight from weeks of not eating and people asking, yes, they would kindly and gently ask if Ted had leukemia. “No,” I would answer, “he is autistic and took Dexedrine.”

About these ads

121 thoughts on “No, Our Son Doesn’t Have Leukemia. He’s Autistic and Took Dexedrine

  1. Oh god… I read this and just felt thankful that this is so many years behind you, though not for so many families. We never took the drug route, which is kind of ironic as we did so many other things far more invasive and, quite honestly, risky. For two months we gave Em oxytocin, but stopped because it was right at the tail end of my “do any treatment and hope it works” thinking and because I read several articles about how large doses of oxytocin were being forced on very young girls in India to induce puberty so they could be used for prostitution. (I’m NOT kidding.)

    More and more I wonder if we wouldn’t have been better off without a diagnosis and had lived off in some isolated part of the world away from all the insanity. I know… feeling a bit sad at the moment.

    • Hi Ariane!

      I understand completely what you mean about isolating yourself from the insanity. In a way we were isolated when Teddy was first diagnosed. The internet was pretty primitive back in 1995 and our ability to get information was encumbered, but at the same time there was almost no comparisons, Teddy was the only kid with Aspergers I knew and I focused on his progress alone. Yes, I didn’t have a support group but I also didn’t loose focus. Don’t know if that makes sense because I really do love this blog community, but I also am a loner. :-) And with insanity still I my mind, sadly I am not surprised by what you said about oxytocin in India. From the feedback I get from a friend in India both their treatment of girls and the disabled has a long, long way to go. But then, But as far as Ted, I don’t doubt him and I don’t regret anything ever done on his behalf. Seriously I don’t. I have this belief that absolutely everything happens for a reason, and although I get down from time to time, I hold on to that belief and I get through. There was a reason for the meds, and there was a lesson for me that came from them (but that lesson is a few posts a way) and I am hoping that maybe through what we did someone can learn and see what took me 8 years to understand. (yeah, slow learner, but I get there eventually!) I sure hope your day perked up and I meant it, I am doing a love post like the one you did today. Here’s to you and one of my favorite words, “friend”. :-)

    • Imagine having a son who’s aloof, painfully shy (all his life), defensive, arrogant, a cold frog, unsympathetic, recalcitrant and authority defiant, who thinks you’re stupid (from the time that he is seven), monosyllabic, never opens a conversation, is clumsy, has learning problems – need I carry on? – and you NEVER knew that he had Asperger’s or other high-functioning type of autism.

      It has to be at least just as bad. He is now 24. I realised last year, after reading about Asperger’s for the first time, that that is what he probably has. How different my thoughts about his personality would have been if I’d known when he was young.

    • I am truly sorry that it has been such a tough and scary journey for you and your family. I also know what it is like to have a special needs child. I have a nine year old son, who is autistic. He is high functioning, but he was completely non-verbal until he was almost six years old. It was nearly impossible to communicate with him, verbally or with gestures. He started kindergarden when he was six and only had maybe twenty words,max, in his vocabulary. He was put in a great program that the school had for children like him. At first, it was a nightmare. I would have to leave work early almost every day because he was throwing things, or rolling around on the floor, inconsolably crying, just to name a couple of examples. A couple of weeks later we FINALLY got in to see the developmental pediatrician. He was prescribed Focalin XR that he takes once in the morning, and it has changed his, and our whole lives. Now, he can focus, he is getting better at socializing, speaks in complete sentences (though the pronunciation is lacking a lot of the time), and no more behavioral problems. He has made progress way past the expectations of everyone who evaluated him when he first started school. For us, the stimulant medication he was prescribed has been a blessing for him and our family.He did have issues with not wanting to eat much for the first couple weeks then his appetite came back to normal. Heck, he is always hungry now. He looks forward to taking his medicine in the morning, and can tell us the difference it makes in his day. He can verbally communicate with us the difference between taking it and the days we skip it, and we can see the difference as well. Pharmacology isn’t the right answer for everyone, but I do not regret my decision to go this route. Thank you for your article. It is a great reminder of how every child on the spectrum is different and that there is no one size fits all answer.

      • And thank you for your comment. This is a wonderful story and I am so happy for you. This highlights what can be wonderful about medication, what it can be like when it works. You aren’t wondering. You aren’t guessing. You aren’t struggling to see how it is this working. That is awesome. Kate often said that she hoped some of the medication we tried would open neuropathways that weren’t open before, that connections not being made would begin to be made. Don’t know if that ever happened with Teddy. Maybe it did, in subtle ways that escaped me. But it sounds like the medication is allowing your son do so much he couldn’t do before. That must be absolutely joyful to watch!!! Keep at it. I can understand why you wouldn’t want to change a thing! I am so glad you wrote and shared your story and you make an absolutely excellent point. Every child on the spectrum is different, just as every child is different, and until we understand the neurological reasons behind autism it is going to be hit and miss in the prescribing of meds. Thanks for understanding this was just our story. Continued luck to you and your family. And thanks again for stopping by! :-)

      • I appreciate your position, and respect your decision in regards to YOUR son. I have said NO to a bunch of different therapies, medication included, myself. I know what is best for my son, and I was scared, and anxious about giving him a stimulant, about the side effects, and stayed awake nights worried about everything that could go horribly wrong. We were lucky and got the right medication first go around. They do have non-stimulant medications now, with very few side effects that are doing wonders, especially for asperger children. I know it sucks to feel like you are allowing your child to be a lab rat, that is how I felt when I was considering some of these other medications they wanted to my six year old on prescription drugs. I did, and continue to do, a butt load of research, especially about any new therapies that seem to be having an impact on the quality of life of spectrum kids. I find that the NIH (National Institute of Health) website has a lot of good information. Good Luck, and I wish you and your family the best.

      • Thank you for sharing as this just may be a great help to someone who also is up at night wondering, “Is this something I should be doing???” Also, the internet, my what a boon it is in doing research. In 1995 when we started this it wasn’t anything like it is today. The ease at which you can find information is stunning and I don’t have to tie up my telephone line doing so! Yes I just dated myself! :-) The ease of sharing information and our stories, of possibly bringing comfort to another mom who is struggling, that’s awesome and why I do this. You are on top of things and are a great inspiration I have no doubt. Thanks for sharing your insights here!

      • I have a feeling that your are a lot like me. I work with my son for hours after school, on weekends, every moment of our time together seems to be a lesson. Right now, we are really trying to hammer down manners.I do have a question for you and anyone else out there reading this, my son has night terrors still. They aren’t as frequent now that he is older, but they used to be a nightly event when he was 1-4 years old. Do you, or anyone else, deal with this? Is this a common thing for spectrum kids? I wrote a paper on night terrors on helium.com if anyone wants to know more about them. So, I do understand them, just wondering if they were common?

      • I have no experience with night terrors. That was something Teddy did not experience. I do have a thought of someone you should read, her site is Musings of an Aspie, she is an adult with Aspergers and she recently did a post on this very topic.

        http://musingsofanaspie.com/2012/11/24/nightmares-an-experiment-in-anxiety-management/

        Maybe it might help.

        And yes, I do believe we are probably birds of a feather. We are both moms who care deeply about our children and have completely committed ourselves to doing whatever is in our power to help our children and if we didn’t we would see that as personal failing of the largest magnitude. I might not have done everything, perfectly, I know I didn’t. But did I try, absolutely!

    • I am sorry for all that you and your child have gone through. I can relate to a point, my son is only four and i never chose to diagnose for personal reasons, but it is a hard path with many crossroads to choose from. As a mom you’ve done everything you can with what you were given, your son is lucky to have you, and you should never ever feel like you did anything wrong.
      Don’t ever give up. The answers are out there. No one can tell you that nothing more can be done, no one in the medical industry is qualified to make that call.

      • Hi Ashley, Thanks for stopping by and leaving your message. You are right on so many points, the journey can be hard but is so very rewarding, our children after all are worth every bit of effort. Ted is in a good place now. He is happy and finding his way in the world, just as any 21 year old young man should be doing. I can think of no better outcome. The medication route was a wild one, and an important one to begin to share. It is just one more story about the many choices a parent must make and a lesson in making sure parents always remember they know their child better than anyone. This sounds like a lesson you have most definitely learned! I wish you well on your path through parenthood. :-)

  2. Oh, I hope there is now a better way to treat your son’s condition. How sad that he became a sort of an experiment on whether the drugs really do work or not by those who are supposed to have more clue. Being a mother desperate for treatment, I would latch on too to whatever the medical practitioners would say. I hope Ted is all better now. My best wishes to your child, you, and your family.

    • Thank you, Imelda! Ted is doing pretty darn well, thank you, and has been drug free since July 2004! He was an experiment as you said and it just got to the point where I was like, no more. There are many people out there who paint these glorious pictures and parents, already maxed out emotionally, have such a maze they must navigate through. Fortunately we missed most of the traps but did go the med route. It is my intent at least to point out not everything is always as it presented. It isn’t with malice I wish to do this, but with a “just make sure your eyes are open” intent. Thanks again for your message, you helped brighten my day! :-)

  3. Thank you for validating our gut instincts on many meds. This is why we refuse flu shots and new wonder drugs. I was an experiment with Cortisone; only in my mid-life did they (and I) discover the long-term effects.The older I get, the more I believe that some medications which encourage behavioral conformity discount the reality and wonder of special needs children (with the exception of those intended to treat truly dangerous behavior). I’ll join you on that remote part of the world…

    • Hi! Oh, you got me all excited because it’s like you read my yet unwritten post about how all this med stuff ended and the ultimate lesson I learned from the experience! How did you do that?! :-) Yes, yes, yes on everything you wrote! That said, there is a place for some meds, my friend who has schizophrenia relies on his meds for survival, and I am so very glad they have allowed him to live a life outside of institutions. But for the most part, we seriously need to reevaluate how we view our dependence on drugs. Thanks so much for stopping by and leaving a message, you will be on my mind as I write the next few posts about meds and I hope you will read them and see that! :-)

      • Very much looking forward to your posts! If clinical trials lasted more than 2 generation successfully, I might be more trusting. Cells adapt and pass along the coded info, for better or worse. We want so much to trust and make the most of life for those we love, so we can’t fault ourselves for our best intentions. I’m just grateful for the wisdom that comes with time. Patience is such a virtue!

  4. A friend of mine has just sent her son to college (nearby) who has autism. She is feeling relieved but disoriented to not have to worry about him 24/7. I do not have kids but finally understood a bit of what she had been living with all these years. It seems really overwhelming.

    • It can be overwhelming at times, to say it isn’t would be dishonest. I understand exactly what your friend is feeling, when Ted went off to school it was so quiet and in that silence I could hear something I had not heard in more than a decade, I heard the sound of my breathing. It was only then that I realized part of me had been holding my breath all those years. Thank you for reading my post and sharing your thoughts. They both are greatly appreciated! :-)

  5. What an experience. You so just want to believe what the “medical professionals” tell us, but … so frustrating. If we don’t raise our voices, we won’t be heard….and speaking of being heard….or “pressed” rather {clapping} ….:)

    • Thank you! This experience has been quite exciting and YES! I am so glad I can help create awareness. The meds weren’t all bad, but they weren’t the answer, at least for us, either. I think the lesson I learned most was to always trust myself first and foremost and that the letters MOM make me as qualified as any other person to know what is best for my child! Thanks for your kind words, they are always appreciated! :-)

  6. I empathize. My 9-year-old son has taken either Ritalin or Adderall with Tenex for years for his ADHD. He wouldn’t be able to go to school without it, but I do worry about the long-term effects of the medications. I’m hoping he’ll eventually grow out of the need for them. Congrats on being freshly pressed!

    • Thank you! What I always hoped was true while Ted was taking meds was something Kate told me – that there is a possibility the medications might help open neuropathways that weren’t open before, and that once opened, especially since he was growing, would remain open. Now that is something a mom could hold onto! Ted eventually went off meds a month before his 13th birthday and we had no behavioral or cognitive problems. In fact, he seemed to blossom. I hope there is truth to what she said and perhaps if there is it may help bring an end to your son’s need for them. Thanks for stopping by and for sharing! :-)

  7. We have a teenage son with a whole menu of learning disabilities and special needs – much milder than autism or aspergers, but combined, they make for some rather large parenting challenges. (Oh, and our son’s name is Teddy, too!) We have resisted the medical advice to put him on something for anger management and attention deficiency. But oh boy, it hasn’t been fun. Thanks for sharing your journey! Sometimes it helps just sharing together and reading each other’s stories. And congrats on being Freshly Pressed!

    • Thanks for the both the congrats and the message. I hope the anger issues for your Ted subside with age for I know all too well how very stressful that is. They did for our Ted. He just learned. He told me with age he figured out how not to let things bug him like they did when he was younger. It quite simply was maturity that helped him the most. And yes, it does help to share. When I first started blogging I felt like someone from the stone age, with this new technology, I could reach out to so many people around the world. And with that, the world got smaller, and friendlier, and there was less of an alone feeling. I am glad people have this resource and am glad when I see it used for good. I wish you the best with your son. :-)

  8. I have/had Aspergers and never let it stop me! Don’t give up. Psychiatric meds aren’t magic; they can relieve symptoms and make coping easier but can’t resolve the underlying issues. While autism did distance me from my contemporaries for most of my life, the isolation helped me catch up at my own pace (although growth was painful). Now I’m in grad school, on par with other students my age. I’m also on the Constituency Board for the Center of Autism and Related Disabilities at the University of Miami, where I provide insight about autism from an autistic perspective. Can Ted articulate what he’s feeling?

    • It is wonderful to hear where you are. Just wonderful! And I truly understand what you mean about the isolation helping you catch up at your own pace for I have seen that with Ted. After high school he went away to school for a year, but quit, saying he was just sick of school and “learning the same ole stuff.” More than anything I think he needed a break from life, a break from conforming and has spent the last couple of years engaged in the activities that he loves and at his direction. And yes, he is able to express very well most of his feelings. Knowing his maturity arc, I think he just needs time and at some point in the future, when it is right, he will return to the world, so-to-speak. He has much to offer, he just needs to get to the point where he is ready to offer it! Thanks for stopping by and for sharing your experience with me. It is so encouraging to hear of your academic success, your involvement with CARD and of your overall happiness! :-)

  9. I have an autism spectrum disorder myself, so I understand a little bit of what you went through. In my case, my meds seemed to do the trick (as far as I know), and they still help me a bit. Just like autism affects every child differently, so do the meds, I guess.
    But there seems to be one thing that all autistic people have in common that most people think about: when the parents are able to cope and do their best to make sure their kid adjusts to the world as they grow up, then those parents deserve sainthood.

    • I am so glad you took the time to share your thoughts, as hearing from Ted’s peers means a lot to me. You are absolutely right, every person’s biochemistry is different, so what works well for one doesn’t mean it will work well for another. Oh my I had my moments when I was brought to my knees wondering if I had the strength to keep doing what I was doing, but it was in those moments that all I had to do was look at that boy who depended on me, whose lifeline I was, and I kept going. The strength indeed was there and quitting was never an option. Occasional self-pity, you betcha, but quitting, absolutely not! :-) Thanks again for stopping by!

  10. I’d be very shallow if I said I understood what you went through, because I haven’t been in your shoes. What I can understand is, you trying anything and everything that could bring relief. I can also understand, how you might have wondered whether what you did was right or not. Mothers do that. And hey! I just realized you’ve been freshly Pressed.!! Congratulations!! you deserve it!! :)

  11. I teach at a school, in my city, for children with special needs. Having attended a lecture by Dr. Daniel Amen, I was enlightened. He claims that it is so often that medication can be wrong for certain subtypes of disorders. And further yet that the wrong medicine can be so very harmful.
    He began his job because he was frustrated by the psychiatrical industry, where it was all guessing. I myself have been diagnosed with several disorders, however I do believe that finding the right method of medication is absolutely key.
    However, you have a beautiful son, and things can only go up from here. As a parent, your child will always be the most important person in your life, and you really represent what a good parent can be. I say ‘can’ because unlike you, there are many not as fortunate. Several of my students have single parents because they are left to cope alone, often once diagnosed. It’s just so devastatingly sad.

    • Thank you for your comment and your kind words. My son is indeed extraordinarily important to me, he and his sister are my life’s work and my joy. I have always approached parenting as a responsibility and an obligation and am fortunate to have a husband who is among many things, a wonderful parent and partner. It has made this journey so much more bearable, having him by my side. I can’t say it has always been bliss, but I can say it has been pretty darn okay! Again, thanks for your thoughts and for what you do. A talented, caring teacher can make a huge difference in a child’s life! :-)

  12. I am sad for all your troubles. I guess I am lucky by daughters came with no problems. Probably one of the only families around. Thanks for blogging your story, I hope it helps others out!

    • Oh please don’t be sad, it happened, but from it so much was learned and I truly believe everything happens for a reason. There are lessons to be learned from the trials and I like to think I am learning them (or at least trying!) and it makes me happy to think what we experienced has given me something to share with others and can maybe even help someone else. That brings me joy. And I am happy to hear of the good place you are in with your daughter. Give thanks! And to you I give thanks for stopping by and reading and for sharing with me! :-)

  13. My son Charlie has been on Abilify for two years for aggression and self- injurious behavior (hitting himself in the face). He has autism. He is up to 177 lbs now. I am afraid to have him on it and weighing 400 lbs at some time and am afraid to take him off of it. I have tried halving the dose, but it just doesn’t seem to work and he seems to gain weight at the same rate. He’s twelve. http://www.reachingcharlie.blogspot.com

    • I am right with you. I know where you are. The drug I think about most is Risperdal, he was 9 and gained 3 inches around his waist in 3 months. That’s staggering and the end of my skinny, little boy! He is now 6’2″, 280. To be totally fair though I must say he does live a very sedentary lifestyle. But still, I wonder, did the drug do something to the appetite center of his brain? What does the doctor say about your son’s weight gain? Will your son exercise at all? Have you gotten a second opinion? So many questions… and I completely understand your fear, it is especially conflicting when you are medicating him (something you don’t ever want to have to do) for aggressive and self-injurious behaviors (something you don’t ever want to have happen.) Thanks for stopping by and sharing, I will be thinking of you. :-)

      • Thank you. We lost our insurance, so we are just going it without a psychiatrist. Our regular doc keeps giving refills, so I don’t have anyone to bounce things off of.

        I also have a son who has schizophrenia, it’s hard seeing people change physically and mentally. I’m not fond of meds, but I have to face the fact that without the meds, not only as Charlie aggressive, but he only slept about four hours a day. That was horrible for all of us.

      • There are absolutely times where medication is valuable and has noticeable results. These are the times where “better living through chemistry” really is true. I have a good friend who has lived with schizophrenia since 1972. He has told me repeatedly that medicine and his supportive parents made all the difference in his life. He has lived a successful, independent life because of meds. How could I deny that? I can’t. I just had to face with Teddy there was no apparent benefit, nothing that made the pros outweigh the cons. I am sure you do plenty of research so I guess at this point you must bounce stuff off your self. Ask lots of questions and go searching for the answers. And above ALL else, trust yourself. Wishing you all my best. Charlotte

  14. Sometimes I would get the feeling that my kids were lab mice. First it was Ritalin for both Will and Mary. Then Mary’s teachers called me up in a panic to tell me that with the Ritalin, Mary had even less language and was very tearful. No more drugs for her, I said. It didn’t help Will at all, so we were on to Wellbutrin for both Will and Patty. Patty would put the pill in her mouth, then spit it out later. She said it made her feel funny. Smart girl. Will was on Effexor for years. When he had the flu in 1995, he developed a secondary infection of bronchitis and the doctor put him on an antibiotic, which in combination with the Effexor affected his liver. Then he told us to always get a flu shot, since the Effexor was necessary…..due to Will’s autism. Like your son, whenever there was more aggression, meltdowns, etc., we adjusted his drugs or tried something. But when the doctor suggested that we try Risperdol, I struggled. Risperdol had been suggested for me (I have bipolar disorder) and I had already read the side effects and decided not to put it in my body. One of the side effects is Tardive dyskinesia…the development of ticks and involuntary movements which may not be reversible. That is all Will needed, I thought…something to make him more of a spectacle…something that might not be able to be reversed.

    After some soul searching and tears, I REFUSED to give him any more drugs, especially that one. The behaviors we were concerned with would have be dealt with some other, mechanical way. That is, through talking, charts, quiet rooms, etc.

    • Ann, as always, you are spot on. Oh how our experience mirrors yours. I have been meaning to ask you, did you find that with maturity Will became better able to understand both himself and what situations that challenged him and then from that teach himself modifications that could get him through such situations? Thanks for sharing your experience. I admire you and your family and your childrens’ success. You done good girl! :-)

      • Yes. After abandoning drug therapy, we relied more on teaching him about himself, how to find his own solutions, how to advocate for himself. I think he sometimes got pretty tired of us coaching him. His father, his team of therapists/teachers, and I reinforced the same message. And since he sat in on the IEPs in high school, he was able to understand the process.

  15. This was beautifully written. I am so glad you were able to free your son and yourself from prescription drugs. I’ve worked with many Autistic children and can imagine for the parents that coping 24/7 would be a difficult undertaking. You sound like a great mom!

    • Thank you. I too am glad we could get Ted off meds. I understand, of course, that meds have their purpose and for some they are very needed. It just became quite clear from our results, Ted was not one of those people. Thank you for reading and for your comment. They both are very appreciated! :-)

    • They are indeed. The power of this platform is that we all can have a voice, we all can share. That is so much better than one lone voice. Thanks for your comment!

  16. Wow, what a tough time you have had there my friend, but as you have now discovered, you are one of many people going through this tough test. I have a couple of suggestions for people going through this, as my sister is with two twin daughters she had 17 years ago, who have vocal dyspraxia (MMR jab related, she is positive). There is a lot of great evidence I have seen on getting the body detoxed of poisons, such as mercury. Here are a few links that might be of interest.

    http://articles.mercola.com/sites/articles/archive/2000/10/01/mercury-autism-part-one.aspx

    http://www.huffingtonpost.com/dr-mark-hyman/autism-mercury-toxicity_b_497047.html

    http://www.pamshelpline.com/My_Story.html

    There are many more things that can be detoxed by the body using many different remedies, but I always suggest thorough research beforehand. There is also some other treatments and analysis we recommend to our clients, such as a bio-resonance scan (such as QXCI), health kinesiology (HK – here are some people which have great knowledge of this such as John Payne, a great friend of mine now http://www.talktothebody.co.uk/about_me.html. (We put my sister in contact with John, with definite improvements on the girls) Plus his partner, Jane Thurnell-Read, who has had a few books published that everyone should read – http://www.amazon.co.uk/Health-Kinesiology-Jane-Thurnell-Read/dp/095424396X.

    Good luck to you all, I hope that some of this is of interest.

    Phil Watson

    Changing Lives St Ives.

    • Thank you for taking the time to share this information. It may be something a reader is looking for. We are grateful we are now more than 8 years drug free. With maturity he has learned to cope with many of the issues that challenged him when he was younger. A much preferred route! Again, thanks for stopping by! :-)

      • You are absolutely correct about spreading information. Creating awareness and promoting tolerance are very important. Another lesson I have learned from my experience these last few days is that no one is small, and that everyone has a voice and something to say. I am very grateful for platforms like WordPress that allow our voices to be heard. Thanks again for stopping by. Charlotte :-)

  17. I share a similar experience with my son. Thank you for speaking so honestly and unapologetically about medication and your journey on the spectrum. I hope your words inspire compassion for so many families struggling to find their way.

    • Thank you. What you have written here, well it is exactly my wish too. It just seems if we can share what we have been through, if it can help someone, even for a moment, it makes everything, everything, just a little more worthwhile. :-)

  18. First, congrats on being freshly pressed! You have a wonderful voice and it is great that you are sharing your story. It is so helpful to other families in a similar situation.

    I also have a special needs son – he is “blessed” with a dual diagnosis (Cerebral palsy and autism). He does suffer from anxiety due to the autism, and we have tried several SSRI’s see if they could help ease the anxiety. We found that they made him sweat profusely and he seemed “dull” on them so we stopped.

    He is now 19 years old and is not on any medication. He moved out last year and is living with several room mates (and full time aides), working part time and is very happy. He still suffers from the anxiety, but maturity and more life experiences have helped.

    Good luck with your journey. Wishing you peace and joy this holiday season.

    • Thank you for such a kind comment. It is so good to hear that your son is tasting independence (and that you are as well) and doing so nicely. It sounds like he has a good situation and how wonderful that you have been able to create a setting for him to be successful! We too found that maturity helped Ted with what he could not help himself with when he was younger and thus once we stopped doing the medication thing the issues we were trying to cope with handled worked themselves out. Wishing you peace and joy this holiday season as well. I appreciate you stopping by and sharing! :-)

      • Knowing that words can have many meanings, both in the dictionary and to people, out of curiosity I looked up the definition of blessed and rather liked this one: “worthy of deep reverence or respect”. Also there was, “belonging to or derived from or associated with a divine power”. I liked the idea of seeing a blessing as something beside the traditional thing to be worshiped or considered fortunate. Just found this interesting and thought I would share. :-)

  19. I’ll admit I don’t know a whole lot about autism or ASD, but I would wonder how a child with Aspergers could even benefit from meds. I mean, there’s nothing really chemically wrong with them, is there? I would think behavioral and cognitive therapy would be best. Our child was sick last year, albeit with ITP, but I know how scary it is not knowing what is wrong with your child or how to fix it. You did the best you could at the time, and like you said, you just move forward from there… BUT I also know that advice is easier said then done. Bless you guys.

    • It is my understanding that no one yet knows the physiological/neurological causes behind Aspergers and it wasn’t Aspergers per se we were trying to treat, but some of the co-morbid conditions such as OCD and anxiety that were making it so hard for Teddy to make it through the day and thus extremely difficult to make the behavioral and cognitive treatments effective. The drug interventions were a stab in the dark, they were attempts to allow him some peace which he clearly did not have. And you are right, we did the best we could at the time with what we had, what we knew and quite honestly, our state of mind. That really is all anyone can do. We learned much from the experience and that is my intent, as I tell our story, to maybe lesson someone’s learning curve even just a tiny bit, if they can learn something from what we went through. Thanks so much for stopping by and sharing your thoughts, you make very valid points and I am glad you gave me the opportunity to respond to them. :-)

      • Oh, okay, I see. Well, and sometimes all you can do is treat the symptoms. I actually have OCD. I’ll need meds forever to help me control my anxiety with it. It doesn’t “fix” the problem, except in the temporary sense. Good luck to you guys. My guess is your son knows he’s loved and that’s really all it takes to make a child truly happy.

  20. Your story is heart-wrenching and I believe you speak for many parents of special needs children out there who are doing their best in difficult situations. Thank you for this.

    • Thank you for your kind words. I hope in the retelling of our story, difficult at times but with a good ending, will encourage others who are where we once were. I appreciate you taking the time to leave me a message. :-)

  21. Stories like yours are the reason we don’t medicate our daughter, who has autism. I have Aspergers and have been put on so many different medications over the years. From the age of 14 to 23, I was bounced from one doctor to another and put on all sorts of antidepressants and anti-psychotics. I was told it was in my head, that I was making it up, that I was just independent… Doctors don’t know enough about autism and related disorders to be prescribing these heavy medications to our kids. I live with Aspergers, my daughter is autistic, my son has autistic traits, and I don’t know enough about it to feel comfortable taking an aspirin for a migraine. I makes me sad that so many families are being harmed by well-intentioned doctors simply because the medical community doesn’t know what these kind of effects these drugs have on the autistic brain. :( Peace and hope to your family.

    • One of the reasons I decided to begin blogging was years of people telling me to share our story. And I hope, that now I am sharing what has happened to us, the good stuff with the bad, perhaps we could help someone else. The story of Teddy’s medication is one such story. As with so many stories, it started out bleak, stayed bleak for a while and then it changed, it got better and valuable lessons were learned.(I just haven’t gotten to those parts in my story telling yet!) I absolutely agree with you about the medical community. We do need to question them, they are not infallible, especially when they really have no clue about the reason why autism and its co-morbid conditions exist. I am not saying they are evil, I am simply saying there are times they don’t know and this is one of them. Thank you for stopping by and for your comment.

  22. I can relate – although my daughter has a different diagnosis, it’s been very difficult.

    On another note, I haven’t yet read through your blog but I would like to share something with you. I thought a boy with Aspergers for a period of 3 months. Do note that I’m not a teacher but rather a biologist and I was replacing a history teacher that was on leave for 3 months. The boy was 15 and had an aid with him at all or most time. He was the source of the best teaching experience I had acquired over a period of 2 years. Knowing that he was very smart, mature, and curious, I thought I would give him the most intellectual/artistic topic I had to choose from. It was a difficult class and I knew the kids would be detached from the subject so I chose him. One day, while he was working on said project, I sat with him and ended up spending the entire period talking about Voltaire. I was so amazed and fulfilled by his level of knowledge and interest for the subject that I told myself that day, that if I had to reconsider my career, I would definitely want to work with children with Aspergers. I had two boys in my class that were diagnosed as such and they were wonderful little learners and workers. Although complex, life is full of little miracles. :)

    • Oh I just love this comment and I immediately went to your site to see if maybe I could tell if you live where I live, if you have met Ted!!! Oh how I love when people “get it”. When they can see the awesomeness of uniqueness. When they can see the depth of our children rather than be blinded by the outward behavior! When Ted came across individuals such as yourself, when he had the opportunity to shine in such their light, he lit up. When he got to express all that is inside of him and feel it appreciated, to feel challenged and valued, he went beyond what is often considered the highest achievement. Thank you for making my day. Thank you for making that young man’s day. You know he will always remember your encounter and his heart will be forever touched from your short time together. That to me is the pinnacle of success and you, YOU were there! Thank you for being one of life’s “little miracles”!!! Most gratefully, Charlotte. :-)

      • I wasn’t sure if you needed to hear that and I am so glad that you did. I will cherish your reply forever.
        The problem with society is that “it” is not that smart and consequently you have a love of people who express ignorance. I am not condescending here.
        I have also seen kids that were brilliant (undiagnosed unfortunately) and couldn’t function in a normal class setting. I once had a teen who walked across the desks while I was teaching. There was something about him and one day I spoke to the school principal to tell her it was out of the ordinary: he couldn’t disturb the class, have no notebook, not listen and still have a 90% average… The following year, he saw me in the corridor and thanked me saying I had changed his life for the best as he had been tested and was now considered gifted and had an adapted school program. There are all kinds of “minds” out there and we should cherish that instead of seeing everything as a problem. My own child with EDS is gifted and I am so thankful for that.
        I would wish for Aspergers’ children that society let them grow and recognize them for what they are. The are simply “beautiful minds” with amazing potential.. I LOVE THEM FOR WHO THEY ARE. :)

        Thank you so much!

  23. It sounds like you & your family went through hell during those years…
    It’s so difficult to reject the words of medical practitioners/”experts” & popularly held beliefs about medications. Society will often tell you that you are doing something wrong by going against the grain. Especially when children are involved. You should be proud that you figured out what worked and didn’t work for your son. I’m sure you are helping others by sharing your story.
    Thanks so much for opening yourself up to us…
    Best wishes to you, your son and your family… and congratulations on being Freshly Pressed — a well-deserved honor!

    • Thanks! I sure do appreciate your visit and your kind words. That time in our lives was very difficult and I have no desire to go back. I am glad though that it left an indelible print on me and that now there are platforms such as blogs for me to share our story. I don’t claim to have any answers, only want to promote awareness, tolerance and acceptance. I also want to share with other parents who might be going through something similar that, above all they need to trust their instincts and as you point out, even when those around you like well-respected doctors tell you something, if it doesn’t settle right, pay attention to that. There is probably a good reason you are getting the feeling you are. It can be hard to trust yourselves over others, but trust you must. Thanks again for your comment, I appreciate it greatly! :-)

  24. I am so glad that G-d led me to understand that Aspergers is a GIFT and not a curse. My son is 18 now and in college. He has to work harder in some areas but in his specialty he is wonderfully advanced and talent. Blessings to you and your family on this journey.

    • You are absolutely right, Aspergers is a gift and I, like you and most parents of kids with this dx, have watched our children’s unique curriculum. In academic subjects Ted excelled, practically teaching himself, whereas in the areas most kids automatically pick up, social skills, he had to be taught the intricate details.Congrats on your son being in college, that is wonderful and I wish you and your son continued success! :-)

  25. Thank you for sharing. Right now I am in the process of learning as much about Aspergers as possible, as I have lived most of my life in denial. I never took any medication and my treatment was mostly around skills instead of drugs.

    • I sure hope, as you do your research that you are feeling better and better about Aspergers and that you are on your way to being at peace with the diagnosis. I don’t believe I ever once wished Aspergers away. The uniqueness, the creativity and the brilliance of my son’s brain has fascinated me since the first time I observed a quirky difference with him at 13 months. Now to be totally honest, the aggression and inflexibility that at times consumed Ted when he was a little guy, the very behaviors that led us to trying medication, now those are definitely things we wanted to see go away. They seemed to have a firm hold on him and we wanted to try to break him free of that hold so his strengths could have a chance to take center stage. For us, it wasn’t medication that released those bonds, ultimately it came with time and maturity and going over situations and appropriate behavioral responses ad nauseum. I am so glad you came by and left a message. Thanks! :-)

      • I am sure you never wished it away, but I think probably everyone who has Aspergers wishes it away at some point. It is very hurtful being turned away by that cute guy/girl and seeing all your friends in relationships while you struggle. As they say you can never be too rich, good looking or popular. Hard to be very popular with Aspergers. Nevertheless, we can only be who we can be and there is alot to like about being your unique self.

      • I of course can only speak for myself as a parent when I say I didn’t wish it away, I don’t ever try to speak for my son. I have asked him about Aspergers though and its impact on him, right now, as a 21 year old he says it is “inconsequential.” I look at it like this, everyone has their experiences, their opinions and draw their own conclusions. I too was shy, had a small circle of friends, didn’t have a boyfriend in high school, was not asked to the prom and didn’t have Aspergers. I don’t say this as a challenge to what you have written, or to your struggles, but actually to say so many of us have had those feelings too but are taught to be quiet about them, to try to fit in and to “fake it till you make it.” But I say, the more honest we are with each other, if we admit to each other that so many of us have dealt with or currently deal with loneliness and feeling like we don’t belong, couldn’t we be a better support to one another?

  26. I know some about autism as my cousin has it… But very similar in some ways is my DeafBlind son that live in his own world as well… you can look up our blog about him. We had to resort to meds for him because we were never getting sleep. Including him… So we needed him to get sleep and we needed sleep. Sometimes its about the lesser of two evils. You can’t win really either way but at least with sleep you can function…

    • Oh my goodness, yes. Sleep is the most critical component of both mental and physical well being. We have to try what we have to in our attempts to solve problems. And yes, with some people medication is the way. I think what is important is trying. I often say, first we do, then we evaluate, then we adjust. What we learned from our trial is that for us, they didn’t work. I will stop by your blog and pay you a visit. I am glad we have this chance to share our stories and in doing so, be there to support one another. :-)

    • You are absolutely correct about this. In my 17 year journey with Aspergers, knowing what it was like prior to blogs and the internet community, even though there were some positives to the isolation, I can say, I definitely prefer it this way. :-)

  27. Good Lord! I had no idea… What a heart-tugging tale and yet many of us cannot even claim to know what to offer by way of advice and options. How can we help? We have not walked in your shoes or Ted’s…
    My heart goes out to you and your family. I commend your effort to try, to adjust, to switch his meds while valiantly protecting your son… Sending you love, light, and virtual {{{HUGS}}} TY for sharing this powerful story and congrats on being FP’d!
    Elizabeth

    • Thank you Elizabeth. But see, you do help, because you already do what everyone can do regardless of whether they have ever heard the word autism. They can be kind to others. And when they see someone who acts a little differently, rather than make fun of them, they can pause and say, “I wonder if there is something going on with this person I can’t see, I can’t explain…” and with that momentary pause, there can be the light of awareness and maybe, just maybe, they will act with kindness where once they might of either ignored or even displayed hostility. Imagine how awesome that could be! Thank you for already being part of that awesomeness!!! {{{Hugs back atcha, girl}}} :-)

  28. Pingback: Autism and Behavioral Medication « Applied Behavioral Strategies

  29. Wow, what a journey. I feel grateful that our lack of diagnosis of our daughter’s selective mutism didn’t require taking any medicine, instead we kept being sent to psychologists and a psychiatrist and more until we stumbled across that label and a whole program of intervention.

    Everyone does what they think is best and sometimes we even go along with things when we no longer think it is the best, until the great revelation.

    All the best on your journey, sending you loving light and positive energy to persevere.

    • I love the way you put this…

      “Everyone does what they think is best and sometimes we even go along with things when we no longer think it is the best, until the great revelation.”

      That is absolutely true. Wow! I had that great revelation with medication and that’s when Teddy stopped and I have had the great revelation with many other things and what I have learned about revelations is the importance of recognizing them and honoring them. They are powerful and insightful and transformative. They are indeed a positive energy force that guides us. Thank you so much for sharing that thought. I just never put it together that way before! All the best to you and your daughter. May you continue to see life in the wonderful way to do! :-)

  30. Pingback: How Blogging Taught Me There Are No Small People In The World « Life&Ink

  31. Pingback: Some Encouraging Words | Will Write for Food (and maybe dental)

  32. Thankyou for communicating this, I don’t think drugs are the answer and I think more people need to stand up and communicate that the ones with the Dr……… might not have it all figured out.

    • In Teddy’s case drugs weren’t the answer and it took me 8 years to finally act on what I instinctively knew. Yes, life is indeed a journey and one of the lessons I have learned along the way is doctors don’t always know and that medicine is a practice with a lot of guess work involved. I now know to question, to not blindly accept and am grateful for the opportunity to share what I have learned with others. Thank you for sharing your thoughts with me, that is something else I am most grateful for! :-)

  33. I enjoyed reading this post. I have also some of the same experiences having raised a son with autism all these years. He was born in 1988, and is now a young man. One thing about him is his smile. He is the only person I know who gets up in the morning with a big smile on his face! This post took me back years, and helped put a smie on my face today. It is hard work raising a child with an ASD, but there are also many memorable and funny moments!

    • Oh my gosh, you are so right. With Ted it is laughter. He laughs more than anyone I know. And it’s a big belly laugh kind of laughter. I can hear him across the house and I love it. I am so happy hearing him laugh and it’s contagious too. There are many lessons to be learned from our kids, I have tried hard to be in the moment and receptive to them. And speaking of in the moment, this post took me back too. It was like another life ago, yet still so vivid. I can still remember clearly finding him under the crib and taking him to get his head shaved. So close and yet so far. I hope your son is doing well. It is nice to meet another sister in the mom’s of autistic kids family! Thanks so much for coming by! :-)

  34. Interesting.

    I myself am an Aspie with dysthymia (clinical depression), and I take the SNRI Cymbalta to help me with that. SSRIs do nothing for me (we tried them when I was a teenager, and again before I went onto Cymbalta). When the insurance company refused to pay for Cymbalta, I ended up having to go on Effexor (it’s the only other SNRI available here in Newfoundland) – and that was a mistake that I’m still paying for, 2 months after I came off it (was on it for 4). (Not with the headaches, that were really serious, but with the fact that my internal thermoregulation seems to be still more screwed up than it was before I went on Effexor.)

    On the other hand, neither of these medications are really directed at the Aspergers – though the dosage of Cymbalta I’m on does help deal with anxiety as well – they’re for the depression, which I suspect is something mostly unrelated to the Aspergers (mostly because of the family history on both sides with depression). For the Aspie traits that are a concern (working on ways to deal with sensory and emotional overloads, and on strategies that help me cope with life as it is), I have a wonderful psychologist who helps.

    It does help that (as an Aspie) I’m “verbal” – though I do much better with visual input and output than audio/verbal – so it’s easier for me to communicate with the psychologist than it would be for someone who is primarily “non-verbal” and has difficulty communicating with writing (though she has helped one who had to write to her for months in order to communicate, because stress shut down their voice). But again, that’s part of what being on a spectrum is all about; we have different strengths and weaknesses, and the people who help us deal with them deserve a huge round of virtual (quiet) applause, and {virtual hugs}.

    So yes, medication definitely isn’t one-size-fits-all, and some people can take and be helped by some medications and not others, and others don’t need medications at all, or need constant ones. (I have two Aspie friends who are so sensitive to medications that they can only take them in minute doses; and both of them rely more on allergy medication to help control things than anything neurochemical.) It’s complex, because you’re not just dealing with the neurological differences, but the overall physiological differences as well.

    Anyway, just wanted to cheer you on the post, and say (again) thank you for blogging.

    :) tagAught

    • Hi again! Oh medication, it is quite the subject and I didn’t write about it for a long time and still only this one time. It has its place, it does. Such as my friend who was diagnosed with schizophrenia in 1973. He takes 6 meds 3 times a day and if he didn’t he knows he would be institutionalized… now there is a testimonial for doing drugs! For so many though it is guess work. I’m all for finding what works, but what I found out about meds was, once we stopped giving them to Ted we really began to focus on the root causes of the behaviors rather than focusing on adjusting his meds. Just felt badly it took 8 years to figure that out! Live and learn. It is my sincerest hope you too can learn about root causes and address those that can be and accept those that must be. I think all of us function more effectively when we understand our whys. :-)

  35. Pingback: Our Journey With Medication, Or, How My Son Had To Count Watermelons « Life&Ink

  36. Pingback: Some Encouraging Words | A Way With Words

Talk to me...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s