I’ve avoided this for four years. But this week, the hubby and I face an important decision in our 5-year-old’s journey: medication.
We adopted our beloved T four years ago – feels like an extra year in there with this pandemic! – and shortly after, he received a prognosis of at-risk fetal alcohol spectrum disorder (FASD).
Thanks to this prognosis, we became quickly well versed in early intervention services, such as speech therapy and behaviour therapy, which have made a world of difference on his development.
We could not be more proud of how far T has come.
But T continues to struggle with a few key challenges, which became apparent during lockdown the past three months: hyperactivity, attention deficit, impulsivity, and emotional regulation.
Since his prognosis from Surrey Place, a wonderful organization that works with individuals with intellectual and development disabilities, T has been monitored by a developmental pediatrician every six months.
We had a check in with Dr L this week. In attendance were T’s teacher, principal, and behaviour therapist.
We encouraged them to speak honestly.
Everyone was in agreement about T’s tremendous progress. But everyone was forthcoming about his challenges.
Prior to the appointment, the hubby and I and T’s teacher completed a SWAN assessment separately. It’s a tool used to assess possibilities for Attention Deficit Hyperactivity Disorder (ADHD).
While ADHD and FASD are two different conditions, many FASD children receive ADHD diagnosis, because they exhibit the behaviour and associated challenges. This behaviour was blindingly obvious in T at an early age.
After the discussion, Dr L brought up whether or not the hubby and I wanted to consider medication for T.
I have been so torn about medication for several reasons.
I’m not a medical professional nor expert on medication. The following are simply my honest thoughts as I struggled and continue to struggle about this over the last four years.
- I worry about the side effects I’ve read about on online forums – such as sleep issues, loss of appetite, triggering emotional issues such as rages, anxiety, depression, etc.
- I worry about how medication will affect his long term health.
- I worry medication will make T into a zombie and we’ll lose his special and fun personality.
- T’s birth mother continues to struggle with addiction and I worry that medication will open up a gateway to drugs for him.
- There’s a part of me that feels that T has made so much progress, let’s give him a fighting chance and see how he will do in senior kindergarten without medication.
- Part of me feels that we’re taking the easy way out with medication, like we’re conceding defeat, raising and waving the white flag, and that we’re not even trying.
- I worry a lot that we are going to fuck things up big time for T by putting him on medication.
We want what is best for T and what will help him reach his life potential.
I will always say this: T is a child with great potential and challenging needs.
He is smart and bright, so so bright. An incredibly caring person. So tenacious, determined. Funny as hell.
As his parents, we want to remove barriers for him so he can maximize his time, learning and growth – and not waste time by all the distractions that lure his mile-a-second moving mind.
This is how we’ve always moved forward – what is in his best interests.
Dr L gave us a medicine decision tool and we told him we’d get back to him soon.
The hubby has been wanting to do this for a long time. I wanted to wait.
I know where we are headed. I just have to take a deep breath and take a leap of faith.
The great thing is that this is not a one way street and point of no return.
There are options. There are opportunities to course correct.
I just need to take a deep breath and proceed as I’ve always done in life… long before T came into the picture… and certainly now with T.
Believe that things always work out the way that they should in the end.
Deep breaths…
My daughter is six with ADHD I will have to make a decision to medicate Friday when I have an appointment. She has a lot of melt downs with me I also know school makes her extremely tired because for her to focus all day 5 days a week is harder than other kids.
Hi Emma, thank you for visiting and for sharing your story.
I wish you the best of luck with your decision. We are still fairly new to medication – having started in early July. I will share an update post later this weekend after I’ve had an update call with his day camp teachers on how he did this summer.
Every circumstance will differ, including yours, but I can say that it’s been mostly positive with our son. One of the unexpected effects were on his mood. He started having these intense but short lived moments of rage and anger. After we adjusted the dose – after consulting with his developmental pediatrician – it’s practically disappeared.
For us, the benefits far outweighs the negative. The real test will be how he manages when school starts this Fall.
I wish you the best of luck with your decision. I know it is a big one and your daughter is so lucky to have you doing all of this research for her benefit.
Take good care.
Thanks not sure what day camp is unless you mean vacation care? She is always being told off for talking I think. I am hoping things will improve soon and she will want to go to school. Glad things are starting to work better for you both. Bring on Friday so hard as parents especially with covid there’s not much communication between the parents and the schools.
Day camp = day care in the summer.
I’m very sorry that your daughter is having these experiences and that it’s making her less motivated for school. In some cases, it’s also an issue with the teacher perhaps not being as accepting or aware of how to deal with kids with additional needs. Without knowing your daughter, a 6 year old that is chatty is not necessarily the worst thing in the world to me!
Best wishes with Friday. I know how hard it is facing all of this in a pandemic lockdown as well. Hang in there and good luck!
Thanks we are inAustralia no lockdown we are lucky we live on a little is,and called Tasmania. We will be trying medication just have to wait for approval from the government. I’m feeling hopeful unfortunately ADHD runs in my family doc says it can be due to genetics. Kind of need to medicate for her safety as she will climb on anything and run etc.
Kudos on making the decision to try medication. It’s a big decision. Best wishes also on trying it and I hope you have positive results.
I love everything about this. I made the decision to medicate my daughter when she was in third grade. It was terrifying, but once we started it my only regret was that we didn’t start sooner. I will still worry about side effects and I will still question when her behaviors are out of control if we need a med change. My daughter is 16 now and we are still finding our way on somethings, but I know how important medication is for her to be able to function. Thanks for sharing!
Thank you for sharing your story so openly. I often read and hear from other parents in similar situations the same thing you shared – why didn’t we start sooner? We are only three weeks in, one week on full doses, and it’s too early to tell what the long term effects are. But I can see a lot of positive already and feel hopeful. And as parents that’s such an important thing – hope. Wishing you continued successes with your daughter!
YES!!! I would say it gets easier, and it will when you find the right medication, but also brace yourself for the day the medication doesn’t work anymore because it will happen. My daughter is a Junior now and I still cringe when behaviors start to change and meds need to be adjusted. I ask myself and her doctors is the medication making it worse or better; I hate to give her medicine she doesn’t need. Part of that is fear, part of that is stigma. Just do the best you can do in that moment and always remember tomorrow is a new day. Best of luck to you! Also….remember you are child’s best advocate and don’t be afraid to fight for the services and/or accommodations they may need to make them successful in the classroom!
Thanks for the heads up. From the reading we’ve done on medication, changing meds is something we are preparing ourselves for. I think you said it right when all we as parents can do is to be prepared for the worst and to also hope for the best.
I can’t begin to imagine the hardships you have all 3 been through Ab. You are strong, I know you just have to be I guess. Life is a journey and you three will venture through with you love, I have no doubt! Stay strong, be well…
Thank you, Andi! 🙏 The journey has been with many challenges but also many wonderful and rewarding moments. And as you and your family know all too well, adversity makes us all the more resilient and grateful. 😊 Enjoy your weekend!
Yes I agree! We look to those precious moments as well as counter the challenging ones to make progress! Enjoy your time too. 😊
I am sure that is such a tough decision to make. All the reasons you mentioned would be on my mind as well. My husband, Bob, has ADHD. He was diagnosed very late when he was around 17. When he was younger the teachers felt that Bob needed to go to the life skills room as he was so hard to handle and they felt he was intellectually disabled. When they tested him he tested as gifted but with all his behavior problems he wasn’t going to a gifted classroom. When he was finally diagnosed and medicated Bob remembers being so proud of himself. For years he had tried his hardest to sit and pay attention but always failed. He could tell everyone was annoyed with him. When he was finally medicated he wanted to show everyone that he could sit and listen and not be annoying. Granted he was 17, and after 17 years of angry teachers as a parent I would have agreed to try a medication. I would think hard about it if the choice came to me about my kids too. We are just trying our best for them. I hope everything works out well for you and for T with your next step!
Hi Robyn, thank you as always for taking the time to comment – and this time, sharing such a deeply personal story and wise advice. I really appreciate it.
I think what resonated the most for me from your story is the idea of kids growing up and their self concept. In Bob’s case, knowing people were annoyed at him. I often read that a lot about kids with FASD or other kinds of special need. And want so desperately to avoid that for T.
I think we are leaning towards trying the medication this summer, while we’re still in lockdown. It’s gonna be scary as hell but deep down I know we need to try every angle.
Thanks for the helpful advice and boost of support!
You bet! I am hopeful that things go well and aren’t too scary although I am sure I would be feeling the same way. The one thing Bob had told me was that he really had the best intentions. He would tell himself, “I am really going to try today. I am going to sit still and pay attention.” And even with his best intentions his brain wouldn’t let him. When he realized it wasn’t his fault, his brain was just different, he wanted everyone to see what HE could do with the right support. Good luck to you and T – I am sure it will be scary. The meds may help, they may not but at least you’ll know. And what a great time with you and your husband there able to watch and support him. He is in safe hands!
Thanks Robyn. The relationship between the brain and heart is so interesting. What one wants to do, sometimes the body does something different. You’re right that that’s one of the reasons we are exploring this – so we can say we at least tried (worst case scenario) or it changes his life (best case scenario). Bob is in good hands with you! 🙂 Enjoy your weekend. Beautiful weather over here and gonna venture out on our very first nature hike since lockdown! 🙂
A story full of love , kindness and tenderness . As parents we indeed wish what’s best for our kids, of what will make them happy, to let them grow able to use their gifts and talents to their maximum potential, to be safe and healthy . Praying for you , T and your family. God bless.
Thank you for this kind and positive comment. You summed it up well. Our little has so many positive qualities and gifts and we want to do what we can to help him utilize those gifts to reach his potential. Fingers crossed and thanks for your well wishes!