The journey of raising a complex, neurodiverse child with executive function challenges

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Welcome to Courtney’s 2Empower Corner

– a blog about the journey of raising a complex, neurodiverse child with executive function challenges

This week, I wanted not only to share a REALLY AMAZING TED TALK about living with ADHD by Jessica McCabe of How to ADHD (an incredible resource as is the youtube channel of the same name), but I also wanted to share a little bit about my own “a-ha” moment from this past week. It’s a little long (and it’s written after all of this in case you don’t want to read it all… ) but if you can make it to the end, I hope that you will come to understand that even with all of the knowledge and experience I have as a parent and executive function coach for neurodiverse and twice-exceptional students, I still don’t have it all figured out in terms of how to get my own twice-exceptional young adult to follow through with all of the to-do tasks, and I totally understand and appreciate (because he is not always in my house anymore) how much energy goes into supporting a neurodiverse child – it is ENORMOUS! 

I also understand that accepting the child I have has been a process and continues to be a process that results in waves of emotions that come and go – grief, acceptance, frustration, fear, celebration, disappointment, hope, and surrender. Through it all, the ups and the downs, I will celebrate and hold tight to the fact that while he doesn’t yet have all of the skills that he needs to live an independent life (and he may never have them), what he (and I) do have, is a strong and lasting connection (hard-won, no doubt), which I treasure. It continues to require intentional effort, patience, acceptance, endurance, energy, and listening (sometimes to things I have no idea about or interest in), but it is my priority and my focus (to be certain it wasn’t always my focus), Moreover, this connection that we share is the thing that I will always work to strengthen and preserve because it is the foundation of everything, including the joy that he brings me and the happiness and satisfaction that he has with his own life. 

What brought these thoughts to the surface for me? Well, read on and find out the story behind the thoughts….

The last weekend in January was a snowy one in New England and I, for one, was grateful for the “forced pause”. I know that might not be the reality for everyone, but for me it was a chance to slow down, connect with my family members (we were down to 3  from what had been the 5 of us for the month of January due to winter break) and also get caught up on some of the things around the house that I hadn’t gotten around to over the previous 3 weeks! 

Why had I not gotten to those to-many-to-mention-things? Well, my aha is that my energy and focus were impacted by the fact that my neurodiverse 19-year-old son had been home from college since mid-December.  It wasn’t that I didn’t want him home or that I consciously recognized that having him around required more mental energy, but the truth of the matter was that after I dropped him off, I noticed that without any of my sleep, exercise, or nutrition habits changing nor the requirements of my time and energy for work or home life changing, my energy level was higher, my focus was better, and the brain fog I had experienced throughout the winter break had lifted.  I thought I was just tired from travel and the holidays, but I think it was something more because I had vaguely remembered that the same thing occurred this past summer after dropping him off at school. 

From the time that he could move, I have devoted a ton of energy to support him. I just didn’t realize how much energy I put into supporting him until I no longer needed to because he was not living at home. But, when he returned (this summer and again over break), I resumed giving energy (because that is what we do as parents)  to support him – but what I didn’t realize is HOW MUCH energy I expend,  the toll it quietly takes,  and how that translates into lost time and energy to spend on other things. 

So, how do I expend energy on him even as a college-aged student – well,  because of his delayed executive function skills, I spend time thinking about how he is using his time, what he might need to accomplish for the day and how I can support him in planning what he needs to do as well as checking in to find out if and when he will or has followed through. (Does any of this sound familiar?) Additionally, I want to make sure that I am not telling him or thinking of it all for him, but rather helping him to think of things he needs to do as well as helping him to develop a plan for completing them rather than just spoon feeding the tasks and the plan to him. All of this requires thinking about my words and my tone of voice and they way I ask and approach him; it also requires me to have the right timing because of his sleep schedule and planned activities that I don’t know about. Finally, it requires me to repeatedly check in with him (especially if there are deadlines that he does not want to miss or that he can’t miss without undesired consequences) until he follows through … and many times, there is no follow through and so the process is repeated again …. for days …, and that’s just to make sure his teeth are brushed, his clothes are clean, his doctor appointments are made and kept, his medications are all refilled and picked up before he returns to college, and he has followed through with what is needed to meet covid requirements to get back on campus – it’s not even helping with homework or meals or future planning. (Meanwhile his older and younger sisters move through their days without any needed reminders – just check ins to find out what their schedules are and how the family fits in and how I fit in to what they might need help with). 

This is all to say that I SEE YOU and I am in this journey with you. It is hard, and the level of attention that our kids require is energy-intense. It requires a lot from each of us. And so while I am coaching it may seem like things are going well for me and my son but it is still not a cakewalk and I am working hard to practice what I preach and I have no idea where my son’s journey will take him, but I continue to do it because the effort and energy is worth it. No, it hasn’t gotten him to do all that I want him to do nor is he where I had hoped he would be at this stage in his life (and I continue to grieve that at times still but I have come to accept that his life trajectory is simply different). More importantly, though my son shares with me repeatedly that he is happy in his life, and he and I share a wonderfully strong and connected relationship. It’s not perfect, but he values my check-ins, my support, my follow-ups.  Of course, he gets annoyed at times, but that’s because he wants to be independent and not be in his mother’s house 🙂 but mostly he expresses gratitude for the reminders or the suggestions, and he shares things that are on his mind and invites my opinion and my conversation.

 He continues to make strides in developing skills and I continue to make strides in being patient and in accepting the timeline that he is on and in seeing his strengths while he builds skills that he doesn’t yet have and needs to be independent. The acceptance of his timeline has and continues to be a hard-fought internal battle. I still grieve. Where he is today, is not where I envisioned he would be when he was 5 or even 10 years old, and yet the relationship that we have, our connectedness, is as strong as ever, and that will always be worth every ounce of energy that I need to expend. 

My focus and priorities have been connectedness with him, patience, seeing his joy and enjoyment of his life and seeing the effort he is making and the growth he has made even though it may be small steps forward and at a slow pace. What is your focus and priority with your child? Is it connection, is it homework completion, is it them becoming more independent, is it self-care, is it getting them to achieve the goals you have for them, is it accepting your child for who he/she/they are, is it getting your child the team of support he/she/they need, is it finding people who understand your challenging journey? 

What emotions bubble up for you as you think about your child and your journey as their parent and their journey as a neurodiverse child?  I named a lot of the emotions that I have had because I have experienced so many of them along my own journey, and I continue to experience them, some days more than others.

Who do you have in your village and what tools do you have in your toolbox to support you in the challenging journey of raising a neurodiverse child? How can that village and those tools help you with your focus, priorities, and self-care ? I know I have the village of 2Empower Parents, my family, my close friends, and my own coach. I also know I need to be outdoors, to exercise, and to find time for meditation and mindfulness. Can you take a moment to reflect on your own energy and how it impacts your daily life and your interactions with your family and friends? How can you let go of something and give yourself and your child some breathing room, trusting that the journey will evolve over time and that the connection you share throughout the journey, if nurtured and made stronger, might just lighten the load for everyone, even if only a little? 

Yours in the complex, messy, challenging but worth-every-minute-of-it journey,

Courtney