The cereal box T created for his media literacy class is called “Growing Stronger.”
I like that they teach Grade 3 students media literary, as well as nutrition, in a hands on way.
Just as diet influences health of kids with fetal alcohol spectrum disorder, our parenting journey has demonstrated that medication can be an effective part of our toolkit to help our son.
It was four summers ago, when T was 5, that we started T on methylphenidate to help with his ADHD symptoms.
As with any medication, one’s tolerance changes over time and we’ve made adjustments, one to two times a year, in close consultation with his developmental pediatrician.
In the last four years, we’ve also tried Biphentin and Guanfacine in different doses and combinations.
Most recently, we added Citolapram, an SSRI drug commonly used to treat depression, to help with T’s mood, and it has greatly helped with his anger, irritability and anxiety.
This is on top of Adderall and Guanfacine, now a total of three daily medications.
If you’re reading and thinking, “Oh my God!” Yes, it is so very heavy.
The hubby has always been all-in with medication and always the first to say, “We need to talk to the doctor about adjusting his meds.”
I was very hesitant to start T on medication, because I worry about adverse side effects and the stigma that comes with it.
The decision to start your neurodiverse child on medication is a very personal one and there are several things a caregiver should consider:
- Always consult with a pediatrician, ideally one with expertise on your child’s diagnosis. They can consult with other resources, such as the FASD medication algorithm (think of it like a decision tree), which was helpful with our recent change.
- Monitor and adjust, because your child’s symptoms may change over time and their tolerance to the type of medication and/or dosage will change as they grow.
- Have an open conversation with your child about why they are taking the medication.
- Plan for a transition period to start medication or change. We start T on any new med or change on weekends or an extended break, like summer, in a calmer environment in case there are any transition effects.
- Be transparent with your child’s community, including family, school and child care staff.
- You are the expert on your child and will make the best decision for them based on the information you have. Be informed. Read up. Ask questions. Ask for second, third, fourth… opinions, until you feel best informed.
Four years in, despite my initial hesitation, I think starting T on medication has been a good decision for him and our family.
We see more benefits than added challenges – and we feel it on those rare and comically disregulated days when we forget to give him his meds.
But it’s not a magic bullet. It’s doesn’t fix everything.
To me, medication is a part of a larger toolkit to help improve outcomes. Other tools include advocacy, accommodations, therapy services and most importantly, fundamentally adjusting your approach to and expectations of parenting.
The FASD parenting journey is hard, but being T’s Papa is the most rewarding job in the world.
You can say that thanks to my child, I, too, am growing stronger each day.
My Life With T 
Maintained at ALARP as well so that the side effects will be less.
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I believe in the “as low as reasonably possible” dose… adjusted through the years… ( ALARP ). And it works.
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Yes, we start low and increase over the years as he metabolizes it differently and as he gets older and heavier and bigger. It works.
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Excellent advice to families about medication. It’s such a hard decision. My kids are experimenting with meds for my grandson with ADHD – one makes him lose weight, another keeps him up at night – etc…they are making adjustments because the meds are working in critical areas. I also remember adjusting Jessica’s seizure meds – always so much to think about – your list is vital for every parent whose child is on meds or if the family is considering meds. V
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Thanks Vickie. The medication journey is so individual and personal and your kids are doing it right by making adjustments. For us, T is very skinny (but healthy) and thankfully no issues with sleep (this would drive me crazy). Wishing them the best with the continued medication with your grandson! 💕
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Thanks, Ab. I also hope they find the right combo 🙏❤️
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Thank you for the information. I agree that guardians administer the medication for your record. Medication is not that common but available partly because diagnosis for such disabilities is expensive and for the rich.
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Thanks Faith. It’s a sobering reminder of equitable access to care and supports. We’re very lucky in Canada that these diagnosis and medication are either free or low cost because of our health care system. 🙏
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You guys are so lucky😀😀 its rough on this end.
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Few questions here out of curiosity✋
Does some this medication cause drowsiness?
Do you give him once a day or at different times?
Do you sometimes forget to give him?
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Thanks for your questions, Faith:
We give him his meds at the start of the day. It’s the kind that releases throughout the day. We find this works best for us, so we don’t have to rely on school staff to give it in middle of day.
Yes, we sometimes (thankfully not too often) forget and we definitely know when we do as he gets quite disregulated!
Is medication common for kids and teens with learning disabilities and challenges in your country? Sorry, I know that potentially sounds like an ignorant question, but it is a genuine question asked out of curiousity.
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I’m glad the meds were a good decision. Like you, I’m hesitant with these things, but my hubs is all in. Mostly I worry about the side effects, like you said. But it’s good these drugs exist, especially when they really help people like T. I’m so glad he has you two. 🙂
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Thanks Betsy! It’s a very personal decision for any individual or parent and you will know what works best. For us, we are so thankful it’s part of his toolkit for sure.
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I love T’s “limited edition” side of the cereal box. You have so many great points about how to support your amazing limited edition. Thanks for sharing the information and helping to push back against the stigma.
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Thanks Wynne! He’s learning capitalism in a hands on with this demand he’s creating with his cereal box. 😆 Jokes aside, he really is a gem and I’m so thankful we are in each other’s lives. 🙏
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Like what Linda said, there will always be risks in whatever decision we take. Hence the importance of getting informed thoroughly like what you pointed out. Other parents out there who also have children with FASD will certainly find those suggestions listed in this post very helpful in navigating their own journeys with their kids.
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Thanks Bama. I appreciate the kind validation. It’s really about weighing the benefits and risks and trying to make the best and informed decision for our kids. 💕🙏
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Four years!!!!! It seems like last year when you both made the decision to try medicine. I am so glad it has made a difference Ab and that you make adjustments as needed.
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Thanks Diane. Four years flew by and it also made me realize that you and I have been blogging friends for a while now too! 😊
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Your point about transparency really struck me, Ab, as an often-overlooked facet. Being brave enough to admit the uncertain feelings, the worries and about “medication soup” seems essential. I think some families are afraid to voice concerns, own up to their feelings. Part of a toolkit. I’m with you! 💕
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Thanks Vicki. The transparency part is so important to all of us, especially with the key relationships in his life, such as school. And most importantly with himself. 🙏
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Oh my. Yes! So good! 🥰
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I totally understand your hesitation. There’s no one size fits all. What works one day may change the next month. You have to always monitor and adjust. But that’s the same with many things in life. There’s always risks. But there’s also rewards and improving the quality of life and outcomes. You are definitely growing stronger each day. There must be something in the cereal!
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Thanks Linda. The point about not one size fits all is true. It really matters at the individual level and it also changes over time as the child adjusts or grows. Always focus on the rewards and benefits. 🙏
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Some great advice here Ab. It’s such a tough thing figuring out the right medicine, right dosage, interactions and everything else in between. It’s the little things to like is that behavior just normal kid behavior or is the medicine causing it. Ugh. There’s no right answers, no magic bullets, as you write, you do the best you can!!!!
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Thanks Brian. It is tough for sure and some meds have not worked well for us. A lot of trial and error and keeping at it until we find one that works. 🙏
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My wife sees this issue in her classroom a lot … monitoring it is half the battle. Hang in there!!
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