Ben turns 19 days after this episode airs, which means Lisa has now spent a full year parenting an autistic adult. She spent sixteen years preparing for his 18th birthday (the will, the special needs trust, the conservatorship petition, the placement research) and none of it prepared her for what the milestone actually felt like. In this episode she shares what that first year taught her.
In this episode, you’ll learn:
- Why you can prepare mentally and tactically for your child turning 18, but not emotionally, and what that gap feels like when it finally lands.
- Why your role as the parent becomes more important after 18, not less, when your child moves to a new placement with an entirely new team and no IEP table to keep everyone informed.
- Why passing the baton is so difficult when you have been your child’s point person for regulation.
A year in, Lisa still does not know exactly where the line is between stepping back and stepping in. This episode is what she has learned so far, not a set of answers.
Resources mentioned:
Related Episodes:
What the Teen Year Have Taught Me So Far (Ep #190)
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Transcript:
You are listening to episode two hundred and fifteen of the Autism Mom Coach, Parenting an Autistic Adult, Lessons from My First Year. Hello everyone, and welcome to the podcast. I am so glad you are here, and I hope you are doing well.
This episode will air just days before my son turns 19 years old, and I’ve been thinking a lot about this first year parenting an autistic adult. And so for this episode, I want to share with you my biggest takeaways.
Takeaway number one, you can prepare yourself mentally and tactically, but not emotionally for this milestone Since Ben’s diagnosis at the age of two, I began to mentally prepare for the day he would turn 18. At the time, he did not speak. He was receiving early childhood services, and at that point, I had no idea what I was preparing for.
Do I fund a 529 plan? Do I apply for disability services? Do I plan for him to live with me for the rest of his life? I had no idea. And at that point, there was really no way to know. So I tried to focus my attention on the things that I could do things like getting his first IEP, creating a will, and creating a special needs trust. And I will tell you, the IEP I did right away. As soon as Ben turned three years old, he entered the public school system with an IEP.
That was fantastic. However, that will and that special needs trust, both of which I had learned about and I learned about the importance that they held for a child with special needs and future planning, I did not do those for a very long time.
Just the thought of sitting down and selecting a trustee, naming people to care for Ben made me sick to my stomach, so I avoided it for years. Then COVID happened. Ben was almost 13 and his father got sick.
He’s okay now, but between a global pandemic and a parent getting ill, it really kicked me into high gear about the importance of having my own will and setting up a special needs trust for Ben
And it’s one of those things where the discomfort and the fear of not having those in place began to outweigh the discomfort and the grief and I got it done. It wasn’t easy. I cried the entire time, but I got it done.
The next decision point was rapidly approaching, was whether Ben would do the typical graduation route of receiving a diploma or whether he would decline the diploma in favor of extended services until the age of twenty-two. For us, this was a no-brainer decision.
We declined the diploma. Now, if you have no idea what I’m talking about, if your child has an IEP, you do not have to accept the certificate of graduation when they complete high school.
Special needs students have the option and the opportunity to decline the diploma so they can continue to receive services through the school district. In Connecticut, the age is twenty-two.
Next, I needed to research and decide whether I would file for conservatorship of Ben, which basically means that although he is legally an adult, I am legally responsible for his healthcare and financial decisions. So prior to Ben’s 18th birthday, I hired an attorney to file a petition, and then we scheduled a hearing date with a judge who would decide whether or not I would be appointed Ben’s conservator.
In addition to all of this, I was researching health insurance, benefits, group home placements, and preparing for Ben’s surgery for OCD. So for the months leading up to Ben’s 18th birthday, I was completely consumed with applications, research, gathering documentation, meeting with potential placements, arguing with insurance companies. All of this, so we could be as prepared as possible for Ben’s 18th birthday.
And all of this preparation helped me focus and feel prepared. It helped me feel like I was doing what I could, and most likely it was also helping me avoid the grief right beneath the surface. I was preparing myself mentally and tactically and strategically. Intellectually, I understood he was going to be turning eighteen and he was now an adult.
But none of that understanding or strategy prepared me for what it felt like when Ben turned eighteen.
It didn’t hit me on the day that Ben turned eighteen or the day after. It was exactly twelve days later in a conference room sitting with Ben’s clinician and psychiatrist, my lawyer, Ben’s appointed counsel, and a judge. This was the hearing for Ben’s conservatorship, and during this hearing, I needed to state on the record all of the reasons I believed that, one, Ben was not capable of overseeing his medical, living, and financial affairs, and two, why I was the appropriate person to have this responsibility.
And then on top of that, listening to his psychiatrist and clinician detailing why they believed the same based on their treatment of Ben, all in front of Ben. It is one thing to talk to lawyers and doctors about these things. It is quite another to do it to a complete stranger/judge in front of your child.
It hit in a different way, and I was devastated for Ben to hear me and the team speak like this in front of him. Ben, on the other hand, handled this all without an issue. He really took it all in stride, especially once he confirmed to me that me being his conservator did not empower me to prevent him from buying 18-plus video games.
But in all of this, what really surprised me and really just made me emotional was at the conclusion of the hearing when the judge stated that she had granted the petition, Ben reached over the table to give me a high five saying, “Mom, we did it.” And this was just so cool. It was like you don’t pick your parents, but you can pick your conservators.
And I was happy that I was his, and I was happy that he wanted me to do it, and that he believed and understood that I was the appropriate person to do this for him
And ever since then, there have been various grief grenades throughout the year that have hit me at different times. All of the things that I prepared for, that I wanted, that Ben needs, but still
They carry a lot of sadness and grief with them. For example, when all of his friends were graduating from high school and they were driving around in cars that said things like senior class of 2026, obviously Ben was not within that group, and that did make me sad for him. Or you walk into the local pizza spot and one of Ben’s classmates is there wearing her college sweatshirt and talking about where she’s going to be and asking Ben, “Hey, where are you going to college next year?”
Ben handled it so beautifully. But just in those moments, just my heart breaking for him because Ben knows what’s up, right? Ben knows what he’s, quote-unquote, missing, and he does feel very left behind and a bit abandoned by his friends and his classmates.
And knowing that is one thing, but seeing your kid experiencing that grief is emotionally devastating for a parent.
Takeaway number two: Your role is more important than ever.
So my second takeaway from my first year of parenting an adult with autism is that my role, my history, my knowledge of Ben are more important than ever
Shortly after Ben turned 18, he moved into a group home setting, and he started at a brand new school, got new clinicians, a new psychiatrist, new everybody. And unlike the IEP table where most of the service providers are at one table and sharing information, this was not at all the case.
So in addition to getting acquainted with a new team, I became the hub between past and present and between and among the various team members, communicating information, history, context, coordinating conversations among team members, trying to keep everyone on the same page, all while Ben was not living with me
As a result, I really took it upon myself to step up and to provide as much information and context as I could. I was connecting previous service providers with current service providers, really trying to educate everyone as much as possible so they had the fullest understanding of Ben that they could so that they could appropriately support him.
And of course, this is not just like an email you send and like, voila, everyone gets it, everyone’s informed. Of course not. That’s just not the reality. It’s an ongoing process.
Takeaway number three: passing the baton It’s really hard
On one hand, I want Ben to be as independent from me as possible And on the other hand, it has been really hard for me to let go and to let his team lead and to let Ben navigate on his own. And most of this comes from not, “I need my baby with me,” and a place of love. I mean, it is love, of course, but more of it’s fear.
It’s fear that his new team won’t get him, they won’t understand his needs, they won’t understand how to support him, and that Ben himself won’t be able to handle it. And the result of both of those things could be Ben getting really agitated, Ben becoming aggressive, or Ben hurting himself
And none of this is simple. Although I want to pass the baton, I’m his conservator, and even if you’re not your child’s conservator, you are their parent. And like I said, my role became more important since he turned eighteen, and yours will likely, too. And so we’re not completely passing the baton altogether, but we do need to let go of it a bit, and I’ve had a hard time.
I’ve been dug in a bit because I am so invested in his placements working out well that I wanna do all I can to support them, and I also want to empower him so he feels good and he feels successful. And it’s really hard figuring out the line of where do I step back? Where do I step in? And that has been ongoing learning for me throughout the year.
And this is a fear that so many of us have, and in my opinion, rightfully so. Ben’s first group home placement was not great for a number of reasons, and I’m really fortunate. I have a child who is verbal and who communicates, and so he could really clearly let me know what was happening and, what was not happening.
I had some real concerns about the skill, capability, and even the willingness of some of the folks that he initially worked with. And so I found myself more involved than I even wanted to be because I saw the lack of understanding that was happening, and I was trying all I could do to sort of bridge that gap.
Now, I’m not saying that my involvement was helpful and that sometimes, of course, it was not. But again, this is what I’m talking about. It’s really hard because although you want to empower your child to be able to figure stuff out on their own, you also want to set them up for success. And I was getting the vibe that in this environment, it would not work out quite that way
In addition, stepping back with Ben has been even harder. For years, I have been his point person for regulation. If something feels wrong, if he is angry, confused, upset, he calls me. So the idea of simply not answering the phone is really nerve-wracking to me
What if he needs me? What if he is on the brink of an outburst? What if just hearing my voice and my reassurance is the thing that’s going to help him keep it together for the rest of the day? Now, I get it. He needs to figure these things out himself. He needs to work with the staff. He needs to build community where he is.
And still, as his mother, it’s really hard, and I don’t want to answer the phone. I really don’t want to, but at the same time, it’s– I’m afraid of what happens if I don’t
This has been a huge learning curve for me, and as we go on, I’ve created different boundaries with Ben about how much contact we have, what we have contact about, and trying to keep myself as much as I can in the mom role with him instead of the therapist/co-regulator.
But it’s hard. Just being able to recognize that for myself has been helpful, being able to give myself grace for that, because it’s a lot easier for other folks to say, “Hey, Mom, step back. Hey, Mom, he’s an adult,” than for you as the parent to do that yourself.
Because I’m not coming from a place of not wanting him to thrive, not wanting him to be independent. In fact, it’s exactly what I want. I have just been so intertwined with all of that for so many years. It’s really hard to figure out how and when to step back, how quickly to do it, and picking your spots.
So maybe that’s actually the fourth takeaway. This is a work in progress and the learning curve is steep. All right, everyone. That is it for this week’s episode of the podcast. If you are parenting a soon-to-be or newly adulted child with autism and you want some support, I highly recommend reach out to me.
I support moms on a one-on-one basis, but I also have a membership community that we are just growing our numbers of moms of kids that are 18 plus. And I know that there is really a dearth of support for our children as they grow older, and then, of course, even less, if any, for us. So if you are interested in having support, having community, but also learning tools that can help you support yourself through this journey, reach out to me.
You can schedule your consultation call using the link in the show notes. Take care and have a great week
Thank you for listening to The Autism Mom Coach. If you are ready to apply the principles you are learning in these episodes to your life, it is time to schedule a consultation call with me. Podcasts are great, but the ahas are fleeting. Real change comes from application and implementation, and this is exactly what we do in my one-on-one coaching program.
To schedule your consultation, go to my website, theautismmomcoach.com, work with me, and take the first step to taking better care of yourself so that you can show up as the parent you want to be for your child with autism
