This week I hit a parenting milestone; my older son turned 18 years old. He is on the autism spectrum and has several co-occurring mental health and medical issues. Parenting him has been a wild ride! I have spent countless hours navigating healthcare and social services to ensure his needs were met. I have struggled with an educational system not set up for neurodivergence. I have had to lean on my support system to get through the harder times. When we were struggling to get through the meltdowns and demand avoidance it seemed like adulthood was never going to happen.
Over the last few years, the transition to adulthood has weighed heavily on my mind. What will his future look like? The traditional path went out the window a long time ago. I have mourned and accepted that there would not be a driver’s license at 16, a formal high school graduation, prom photos, and other typical expectations. My goal has become to help him to live his best life and to be as independent as possible. I want him to be able to manage his finances (and understand that the new video game is a want and that rent is a need), medical care, and to have a purpose to his days. I want him to find a career that he finds fulfilling where he has enough income to support himself. I hope he finds people who love him and appreciate his quirky personality.
The preparation for turning 18 began with a lot of conversations with my son’s care team. We completed a psychological re-evaluation through the Thompson Center so we could assess needs and have the information needed if we needed to pursue a guardianship. We looked into guardianship and limited guardianship. We figured out which providers will continue at 18 and identified the ones who will need to change (I’m still very sad that he has aged out of seeing Dr. Stroud at The Thompson Center).
One of the biggest concerns was making sure his health care needs would continue to be met. We want him to have the support he needs to navigate the complicated health care systems he is a part of. We have been working on helping him understand his medications and to take a more active role in communicating his needs with his medical providers. I heavily considered that we may need to get a limited guardianship. This would potentially allow us to have decision making capacity over medical and financial decisions while still allowing him to vote, have a driver’s license, and marry. He has been showing increasingly mature decision-making skills so we decided not to take any action that might limit his rights at this time. Providers have assured me that, with my son’s consent, we can still be a part of his care and he was on board with this.
Despite all of the worry and planning, I was not prepared for the day he actually turned 18. Several medications needed to be refilled and one of them required a doctor’s authorization. I went to the healthcare portal to message his doctor and request the refill but found that he had disappeared from my portal. All of his healthcare records, appointment schedule, and more were gone from my sight. It was a gut punch. For 18 years I have vigilantly monitored all of these services and suddenly that was completely gone.
What we have learned is that he has to be given his own portal access and then grant me “proxy” status so I can have access to his information. He has signed releases of information with the healthcare system. He has had to authorize access at our pharmacy. There will need to be releases completed with the different social service agencies he is involved with. We need to now begin the process of connecting him with the services he will need as an adult such as Vocational Rehab.
As a parent I have needed to utilize my own support system and therapy to help me to process my feelings about this next stage of parenting. I am having to do a lot of research just like I did when he was first diagnosed as being on the autism spectrum.
Recently, we added my friend and long-time colleague Dr. Jacque Sample to our team at Better Together Mental Health. Jacque is an Occupational Therapist and the mother of a son who is on the autism spectrum and a few years ahead of my son. Jacque specializes in supporting young adults in navigating the skills they need as an adult. She can help them to become their own advocate and manage their basic life skills. Jacque can help with the transition to college and ensuring that the services needed there are in place. Since Jacque does most of her work in the community and the environment where the skill will be needed it is convenient.
In our next blog Jacque will be sharing more about the transition to adulthood from her perspective as an OT and a mom who has been navigating this life stage for a few more years than me.
