The Worst Game of Tag Ever

Or is it Hide & Seek we are playing?

For the medication-chasers, the therapy-drivers, the middle of the day phone calls from school-takers, and the broken-sleepers 🤎

1. Have you considered medications for your child with autism?
   
   If “No” you can stop here. None of this really applies.
   
   If “yes”, please proceed to Question 2.

2. Has a family member, friend, or stranger on the internet made you feel guilty about considering pharmaceutical medications for your child? Have they touted the promising results of naturopathy, supplements, diet changes, essential oils, home detoxes and very expensive vitamins whilst screaming the evils of Big-Pharma [1]?
   
   If “No”, you are very lucky.
   
   If “Yes”, you’re in good company and may proceed to Question 3.

3. Have you tried naturopathy, supplements, diet changes, essential oils, home detoxes and very expensive vitamins? [2]
   
   If “No” don’t worry, you’re fine. I really don’t think God is watching us from heaven thinking, “Oh, sorry Mom, you’re so close to that magical combination of Vitamin B and Glutathione needed to give your son a fuller life, but he actually had some M&Ms at that class party (tsk tsk) and the Red 40 undid everything you’ve been trying to do for his microbiome and the gut/brain connection you’re being told holds every secret to his healing, so you’re going to have to start over and do it perfectly.” I just… can’t see God making a chemistry scavenger hunt for parents to find His best for their child—privileged parents who have the time, money, and education to pursue such a hunt, at that.
   
   If “Yes”, well of course you did. You tried everything. Everything. Because you are a mom and there is nothing safe you wouldn’t try for your child. And maybe some of it helped. Healthy bodies do make healthier brains, absolutely. And still, try as you might, every combination of lavender and magnesium and melatonin and epsom salt baths cannot stop your buddy from waking up at 3:00am to blow his Thomas the Train whistle, which he will not get in his bed without. A full night of sleep has eluded you both for years.

4. Has a family member, friend, or stranger on the internet made you feel guilty for not considering pharmaceutical medications? Have they told you to stop being stubborn, to accept God’s common grace in the form of science and research-backed medications and the gift of living at this point in history when we have access to these things?
   
   If “No” you are very lucky.
   
   If “Yes”, you are again in good company and may proceed to Question 5.

5. Have you familiarized yourself with all of the risks associated with antidepressants, anti-anxiety medications, stimulants, anti-psychotics, SSRIs, and the like?
   
   If “No”, then you should. The risks are real. Things like weight loss or weight gain, dependency, worsening symptoms, and allergic reactions are common and need to be taken seriously.
   
   If “Yes”, you’ve weighed the pros and cons but have determined that your child’s life without medications is at a point where it is so clearly time to try something more, please continue to Question 6.

6. Have you grown confident in your choice to medicate your child, under the guidance and supervision of a doctor you trust, someone who will follow up with you consistently and help you look for adverse reactions?
   
   If “No” that’s okay. God made you the parent of your child for a reason and you are free to pursue your child’s best in the manner you deem appropriate.
   
   If “Yes”, you may proceed to Question 7.

7. Have you found a pharmacy that will accept your insurance and a medication they will cover?
   
   If “No” ugh, I wish you luck and stamina for the search, dear friend.
   
   If “Yes” that is great news, and also I need to tell you to please not get too comfortable, because after all of your research and prayer and discernment and insurance approval, you are about to play the biggest and most frustrating game of tag ever.

8. Did your child respond well to his stimulant after one month?
   
   If “No”, it is perfectly okay to go back to the drawing board. Maybe a lower dose or a different medication altogether would work?
   
   If “Yes”, if the medication brought your child from a Level 10 every morning to a far more manageable Level 5—a level at which your son is more compliant, more focused, and just generally operating at a volume and pace that makes your entire day significantly easier—wonderful news! You found something that truly, genuinely helps! After six-months of Vitamin B shots you had to sneak into his room once he was asleep to give him so as to avoid the trauma of physically holding him down every night—with absolutely no discernable difference in affect or behavior—what a grace to have found something that helps your child, that visibly reduces the angst and tension you see him live with in the world. You may proceed to Question 9.

9. Did you call the pediatrician to refill the godsend of a prescription, the one you’re wondering why you waited so long to start, only to get a text that the pharmacy is “out of stock”?
   
   If “No,” great, enjoy the next 30 days.
   
   If “Yes”, try calling another pharmacy (but make sure they take your insurance!)

10. Did you find another pharmacy with the medication in stock?
    
    If “No”, keep trying. Your search may lead all over town and derail every other plan you had for the afternoon but on the bright side, you’ll get to see parts of the city where you live that you don’t usually spend much time in. And with any luck, there will be a Trader Joe’s near one of these new-to-you-pharmacies so you’ll be able to buy flowers and chocolate for yourself on the way home.
    
    If “Yes”, great, enjoy the next 30 days.

11. Have you tried calling the pharmacy several times but been unable to get through to a human being?
    
    If “No”, that’s great, and I applaud you on finding a pharmacy that a) accepts your insurance, b) is fully staffed, c) has your medication in stock this month, and d) actually answers their phone. (The only thing that could be better than this is if said pharmacy has a drive-thru (!!!) because after all, your child has autism and you’ve made a habit of avoiding getting out of the car and waiting in lines with him for many years now; but that may be asking too much. Someone who answers the phone is really enough to be thankful for.)
    
    If “Yes”, I hate to tell you this, but you may just need to show up at your pharmacy and wait for your turn to speak with someone. Ask what they have in stock and when they say, “It looks like we do have that medication, we can fill it for you by this evening,” go ahead and tell them, “Oh thank you, but I don’t mind waiting right here with my very loud toddler while you fill it right now please and thank you.” And then dear friend, don’t you leave that pharmacy without the medication in hand. Allow your three-year-old to throw those little plastic inflatable balls that stores often keep in bungee chord cages all over the place. Make your presence known because not everyone understands the difference between a Level 10 and a Level 5 but you, Mama, you do. Life changes in between those levels. And you will not be denied nor put on hold one more time.

12. Until next month, when you will be put on hold again.

13. Has your child been prescribed a second or maybe even a third medication? And this medication, too, is helping with various aspects of his challenges and you definitely want to continue using it?
    
    If “No”, carry on with what is working!
    
    If “Yes”, mentally prepare yourself for “prescription tag” every two to three weeks as each controlled medication runs out of its supply. I find positioning this all as one big puzzle that gives you a healthy dose of dopamine every time you solve it and walk out of that pharmacy with the goods in your hand, it helps with the whole “oh my gosh, how is this my life?!” pity party you’ll be tempted to throw.

14. Have you questioned yourself at least once day, wondering if you should keep chasing these medications, if your child is ready to wean off of them, if you’re really up for this for the forseeable future?
    
    If “No”, you’re very lucky.
    
    If “Yes”, I just need you to know: you’re not alone.

15. Is your child—your incredible, resilient, beautiful child—worth every minute of the chase you do re-enter every few weeks?
    
    Oh my gosh, yes, yes, yes, of course he is. This is the work, you tell yourself, this IS what love requires of me.
    
    You’ve already navigated judgment and self-doubt and the vitriol of certain comment sections on the internet and more self doubt (there’s always so much dang self-doubt) and still, you’re doing your very, very best. And you are the girl for the job.

//

[1] I share many of these concerns.

[2] I love naturopathic medicine, friends. And I have an essential oil diffuser and don’t mind telling you I’m obsessed with my orange and vanilla combination. My son’s health also improved greatly on a dairy and gluten free diet. We incorporate as many natural interventions as possible and, also, are very grateful for stronger ones.

For more of my writing on disability, check out Gluing the Cracks: Reflections on Motherhood, Disability, and Hope and The Very Best Baseball Game.