Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
Many of you know this has been a battle for us for many years. It's the question every parent with a child with autism faces at one time or another...any special needs really. We live in a society that wants instant relief and often thinks nothing of popping a few pills to get it. Please know that this has not been the case for our family and Jeremiah. But it has been a sensitive topic of discussion, mostly in the form of unwanted and unsolicited advice from well-meaning friends and family. "Aren't you worried about what all of those drugs might be doing to Jerry's development?" "Maybe what you are seeing is just side effects from one of his medications." "He takes too many different medications. How do you know what is helping and what is hurting him?" "The Bible says that taking the kinds of medications he is taking is sinful, and could expose him to demonic influences. That's why he is behaving the way he is." "If you just had faith, God would heal him without all of those medications." "Have you tried...begins to name every known natural remedy mankind has discovered and God has created."
First off, regardless of Jerry’s autism, he would be on medications to control his epilepsy. Not many people would argue that his epilepsy medications are a necessity, especially when they witness him seizing. It’s horrible. It would be a crime punishable by law for us as his parents to deny him a medication that stops his brain from seizing and causing him undue physical trauma and stress. People would be outraged at a parent who would even consider allowing their child to suffer in such a way.
I remember after Jerry’s initial diagnosis of Asperger’s, the psychiatrist looked across the desk at me and asked, “Do you believe he needs any medications at this time to help manage some of his behaviors?” I was caught off guard at first and then indignantly and albeit ignorantly proclaimed that my child would never need medication to control his behaviors. That’s what discipline was for. He was such a kind man, a Christian doctor at that. He smiled, nodded, and told me to call me when (not if) I changed my mind. Of course I regarded him as having some nerve when I left his office that day. Not even a year later, my viewpoint was drastically being changed for me by an out-of-control, discipline-resistant, obstinate little boy who had our family’s peace and joy in a vice grip of tension and trepidation.
Jerry was emotional. He could be laughing one minute and crying inconsolably the next. He was impulsive. And I don’t mean that he merely had trouble thinking before he acted. One day, while in a friend’s van after church, they were on the interstate when he decided it would be a good idea to unbuckle his seatbelt and attempt to open the side door to jump out. He could pick up a rock or stick and hurl it at a passing car or kid faster than we could reach out to grab his hand to prevent it. He was angry and sullen and often reacted to those emotions with physical aggression.
He couldn’t express his emotions in a somewhat healthy manner like the majority of his peers and this would trigger all kinds of outbursts over even the smallest of upsets in his routines. Sometimes, there were no triggers, no apparent antecedents to his off-the-wall behaviors. These were the hardest to deal with because you never saw them coming. And his obsessive-compulsive behaviors were to such a degree that he would scream at us to please make them stop. We felt helpless. Our hearts were breaking for him. Our existence was on eggshells, on a fault line of molten lava that simmered just beneath the foundation of our home, our lives. John and I were feeling its effects as a couple. Our other kids were feeling its effects as Jerry’s siblings. And he was only five. Something had to change. So back to the doctor we went.
I’m not going to outline the medications we’ve tried over the years. I won’t name names. Some worked, some didn’t. Others worked for a while until Jeremiah’s little body stopped responding to them, became tolerant to them, resistant. All of them came at a cost to our family, both financially and via a myriad of side effects that were sometimes worse than the behavior we were using the medication to combat in the first place. We attempted a medication-free Jeremiah once to evaluate his real need for them. I say once because that’s all it took to know that there were certain medications that he just needed...as much as he needed his epilepsy medicine. And I know some of you reading this will disagree with me, but I am ok with that now. I didn't used to be. I tend to be a bit of a people-pleaser. However, you don't live in my house with the 24/7 of it all.
Is my kitchen cabinet looking like a pharmacy shelf what I had in mind when I dreamed of the future my baby growing inside of me would have someday? Nope. Do I wonder sometimes what the long-term effects will be of the medications he is taking at any given time? Yup. Is it a continuous struggle as he grows, develops immunities to certain drugs, and his body chemistry and metabolism changes? You bet. But I will tell you this. On the good days – the ones that often times outnumber the bad days – the days where we have peace, there is more laughter than tears, and we forget for just a few moments in between the symptoms that Jerry has autism…it is worth it. All of it. And so this is our choice. Yours may be different. I won’t judge you for yours. Please don’t judge me for mine. We did not make it lightly and prayed about it diligently.
Now for the explanation of the picture at the top of this post. The top picture is the 16 pills Jeremiah took daily prior to his hospitalization this past summer for the Superior Mesenteric Artery Syndrome. The picture of the five pills below that one represents what he is currently taking...and four of those are his seizure medication.
Jeremiah was so lethargic and disinterested in all things involving moving when he came home from St. Joseph's with his feeding tube that we decided he probably didn't need several doses of the "as needed" medication that he was taking. Before we knew it, two weeks had passed and he was still managing well without it. We talked it over and surmised that, since his behavior really couldn't get any worse than it had become in recent months, what would it hurt to try weaning him off more of his current regimen. And practically speaking, weaning him while he was encumbered by a feeding tube and IV pole, thus slowing his reaction time and making it easier to escape his physical assaults against us, just made sense. Parenting Jerry is sometimes like being a military commander and devising tactical battle plans for the rest of the troops in our house.
Before we knew it, one medication led to another until he was weaned from all except his seizure and OCD medications. It took us nearly two months of making minute changes one medication and one dosage at a time, but here we are. And we tried to decrease and ultimately stop his OCD medication and were met with immediate negative results and consequences. He began obsessing over EVERYTHING, repeating phrases and actions, and becoming very angry with himself when he did not complete a task or sequence of events perfectly (in his mind). He would cry and start over and get so angry. We decided that the advantages of him staying on that medicine far outweighed the advantages of weaning him from it.
As of yet, we have not seen any negative results of weaning him from his previous regimen. Let's say, he is no worse. he is still cursing, still hits and kicks and throws things at times, and is still very irrational. He is different though too and we have noticed those differences, as have his one-on-one therapists at school. We are all documenting those changes in his attitude and behavior and working to adjust his previous goals and help him learn how to function in his "new skin,"...unmedicated for the most part.
Now what I am going to say next is the most important part of this post. I know that there are some of you reading this right now who are praising Jesus, shrieking, "I told you so," and claiming victory over the big bad pharmaceutical bully. Then there are a few who, because you have walked a similar path to ours and determined that medication is also the best course of action for your own children, are cringing and recoiling in guilt, judgement, and self-condemnation because you are just not there yet and maybe never will be.
HEAR ME. IF AT ANY TIME, AFTER HAVING EXHAUSTED ALTERNATIVE METHODS AND THROUGH PRAYER WE DEEM IT NECESSARY TO PUT JEREMIAH BACK ON ONE OF HIS PREVIOUS OR A NEW MEDICATION, WE WILL NOT HESITATE TO DO SO.
While we experienced negative side effects in the past and struggled to find good combinations and helpful solutions when it came to the meds, we also experienced many years of peace, saw Jeremiah able to function without frustration and at a level similar to that of his peers, and were afforded great lengths of time when the successes outnumbered the failures when it came to conquering some of the more aggressive symptoms of autism. That being said, if we had it to do all over again, WE WOULD NOT HAVE DONE IT ANY DIFFERENTLY. Our decisions were not born out of a lack of faith, were not taking the "easy road" through autism, and were never made lightly.
So no gloating and no guilt.
This is where we are now. Better yet, this is where God has us now. As we discover and uncover the "new" Jeremiah and what life with him looks like now, I will post about those changes as well so you all know what we are facing and how best to pray for us.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.