I'm a 44 year old dad with a 10 year old son with severe autism (AND NOW ALSO WITH EPILEPSY, AN ADDED BONUS!!). My wife is an Autism Mommy Rock Star! But she doesn't like me RANTING about autism too much on Facebook to our friends & family. So I've created this anonymous Page with which to rant about autism and celebrate my son "Kyle" :-). For the full Autism Daddy experience "like" my Facebook Page at https://www.facebook.com/AutismDaddy
Autism vs Parkinson's -- Why are drugs considered bad for one & good for the other??
I have a soon to be 9 year old son with severe / classic non-verbal autism. I've written on here countless times that he has the receptive language & expressive language of about an 18 month old and he has been for years. And a few days ago I painfully recalled what my son used to be able to do / how his brain worked when he had mild PDD-NOS before his huge, unusual, late, slow regression. (you can read that by clicking HERE) And now that you know that you can better understand my controversial posts a few weeks back about those who say they wouldn't change one thing about their asd kids if they could. (you can read that HERE & the follow-up post HERE) One thing that came out many of the comments is that why would you want to alter your autistic kid's beautiful mind? And why would you want to change his brain? His brain just works differently than most of ours. Not worse, just different. And a lot of this comes up again BIG TIME when I talk about the fact that we've tried certain prescription medications on Mr. Kyle. People write that meds are dangerous, meds have horrible side effects, pharmaceutical companies are evil, etc I'm really curious if the people that feel this way are the people who's kids they feel were born with autism. Because if you saw your kid have a lot of skills, if you saw your kid speaking, and then saw all of that regress and fall away, regardless if you feel your child's autism was caused by something (vaccines, etc) or he just had late onset autism, if you saw what your kid was capable of before it slipped away, wouldn't you want to alter his mind to get it back? I'm not writing this today because I'm looking to write another controversial post. I swear.
I'm writing this today because I was thinking of my dad this morning. I saw my dad on Sat & Sun. He is in a nursing home with advanced Parkinson's Disease.
If you are not familiar with Parkinson's it is what Michael J Fox and Muhammad Ali have. Parkinson's Disease is described as "a disorder of the brain that leads to shaking (tremors) and difficulty with walking, movement, and coordination."
No expression in the face (like you are wearing a mask)
Muscle aches and pains
Movement problems, which include:
Difficulty starting movement, such as starting to walk or getting out of a chair
Difficulty continuing to move
Loss of small or fine hand movements; writing may become small and difficult to read; eating becomes difficults
Rigid or stiff muscles, often beginning in the legs
Shaking, called tremors
Usually occurs in the limbs at rest, or when the arm or leg is held out
Goes away when you move
Eventually may be seen in the head, lips, tongue, and feet
May be worse when tired, excited, or stressed
Finger-thumb rubbing (pill-rolling tremor) may be present
Slowed, quieter speech and monotone voice
Low blood pressure when getting up, sweating, drooling, lack of body temperature control. These problems are due to something called autonomic dysfunction.
Other symptoms may include:
Anxiety, stress, and tension
Sounds like a real picnic, huh? Who knew the brain was responsible for so much! Parkinson's in a brain disorder that usually comes on after the age of 50. And comes on slowly, and slowly starts eating away at one's brain and their skills start regressing. And what do you do when you start getting Parkinson's? You start fighting it by taking lots & lots of drugs. Just like classic autism there is no true cure for Parkinson's. You can hope to try different treatments/meds to lessen the symptoms and to hold on to some of your skills for a little while longer. But I've seen first hand how adjusting my dad's drug cocktail by adding in a new med, or adjusting a dose, or even adjusting the time of day or the time between between doses can have a huge impact on his brain from one day to the next. One day I'll visit him and he'll be completely lucid and conversing and his speech can be understood and his body will seem more flexible. And another day he will be much more rigid and his voice can barely be understood and he can be hallucinating / confusing reality and his dreams. Most of that good day vs bad day I attribute to the drugs. So if drugs can help that much with Parkinson's, a disorder that affects the way the brain works. And if drugs are accepted and can play such a pivotal role in the treatment/ management of Parkinson's, why are so many in the autism community so against / afraid to try drugs? When you are living a normal/ typical life and then you feel Parkinson's start to eat away at your brain and you can actually feel your functioning level start to regress and describe what it feels like to others what do you do? You FIGHT IT TOOTH AND NAIL! And you try every drug possible, side effects be damned! (Read one of Michael J Fox's books and this is the vibe you will feel) But some of our kids with autism developed normally for the first couple of years before autism set in and ate away at their functioning levels and yet we are afraid to try drugs on them. Why?! Because they can't tell us, communicate what is happening? If they could wouldn't you be fighting it tooth and nail?! And I'm not talking about or looking for drugs that will cure autism. Just like Parkinsons I'm talking about drugs that will help diminish some of the debilitating symptoms and improve one's quality of life... even if it's just for a few months. Now if your kids are high functioning or have Aspergers I can understand being hesitant. And maybe drugs aren't necessary to truly improve their quality of life. But I've seen first hand with my dad how drugs can have altered by dad's brain and have a HUGE impact on his functioning level, mood, happiness and general well being. I've written about how drugs have rewired my brain and helped me IMMENSELY with my depression. (you can read about that by clicking HERE corrected link!) And I've written a little about some of the meds we've tried with my son. And here's a little more.
Over the last summer Kyle was filled with RAGE. He was very violent and having multiple major meltdowns/ tantrums per day where he could be self injurious and hurt one of us. Starting in September, with the help of a psycho-pharmacologist who specialized is spectrum kids we've had him on low doses of two old school meds, 2 meds that if you use google will scare the bejesus out of you, 2 meds that were talked about in the book/movie "One Flew Over The Cuckoo's Nest, and 2 meds that have helped Kyle IMMENSELY... The 2 meds? Klonopin & Thorazine... 2 scary meds, in very small doses that have rewired his brain a bit and improved Kyle's quality of life and made him a much happier kid. He is NOT a zombie in any way. He is just Kyle but without most of the meltdowns/ violence. And I know that Kyle won't be on these meds forever. And coming off of them will probably be pretty darn rough, but for now they are helping manage some of his symptoms the same way the Parkinson's meds manage some of their symptoms. That's all I got. I just want to leave you with the fact that Parkinson's is hereditary and my dad has it and his dad had it, so it's probably heading ol Autism Daddy's way someday. And I will be fighting it tooth and nail. And hoping that the evil drug companies come up with a cure or at least even better drugs with fewer side effects. But between now and then, I'll be looking to and depending on those evil drugs to manage some of Kyle's more severe debilitating autism "symptoms", the things that get in the way of him being happy or making any significant progress. That's all folks. The end! :-)