We're in a new phase right now: Guardianship.
According to the law, Hayden is legally an adult now. So that means we have to apply for something called Guardianship in order for there to be certain safeguards in place. Parents can begin that process through a private attorney or through Arc.
The Arc of NJ supports children and adults with disabilities and where we live it's the Sussex County Arc, or SCARC. Guardianship should feel like a relief I suppose, but as a process it is not fun. It is not only lengthy including all the steps, and time consuming forms and evaluations... but on top of that it can be costly. More so if you need or choose to use a private attorney (roughly up to $4k or $5k). But I was still surprised at the many fees (and some hefty!) even if you file without one. It's up into the four digits either way. You also have to re-file every year-- while not at the same level of expense or time, Guardianship is still not a one-and-done process. It also needs to be established in order to maintain decision making with regards to healthcare, and to be able to apply (or re-apply) for other state services, and much more. But the problem is there's a window of time in between when you temporarily lose some of that access as soon as your child turns 18, because you can not proactively have the Guardianship already established. So at that point you're at the mercy of the state's timeline.
I've learned we are lucky that we are able to file through SCARC, but even more so as Sussex County residents (because they also offer Guardianship services for other counties with Arcs that do not). They have been beyond wonderful. I sometimes think about the slogan on the road signs when you cross over the line into the County, and it says "People and Nature Together"... and how that did not sound like something I would want. The first time I saw one of those signs I didn't even know what to think. I grew up in an upper middle class, suburban neighborhood about 25 miles from Manhattan. When Dan & I moved to this unfamiliar County shortly before Hayden was born, and then learned of our son's diagnosis when he was 17 months, there were needless to say a ton of concerns. Among them, was the fact that we now lived in a rural area. And not knowing what that would mean as far as services and support. And we made assumptions that perhaps a different County with more population, could mean more money, and therefore better resources. We were wrong. Instead of a smaller population of people per square mile translating to less local services, for the most part its meant a little less struggle to compete for providers and availability of said services. My mom recalls this coming up in conversation at one of the specialist appointments early on in our journey, and in response to our concern they said I wouldn't be so sure. And commented that it may work to our advantage.
The Guardianship process itself is a difficult pill to swallow, though... the whole paper trail... I hate the wording.... we are listed as plaintiffs in the manner of an alleged incapacitated person. Our son.
Establishing Guardianship is streamlined for everyone... even a person having been born with a medical diagnosis of fragile x syndrome, for which there is no cure. It's further absurd that persons with disabilities are also required to register with Selective Service, even if their disability would not qualify them for military service. Filing for Guardianship for some people, should automatically cancel out having to register in the Selective Service System.
For as much as Hayden doesn't understand, he also notices nearly everything. He has seen these big envelopes arrive in the mail, he's seen me filling out forms, and he has overheard me on the phone. I also had to try to explain to him why we were going to have a virtual conversation with someone we didn't know (evaluation by a SCARC-appointed psychologist as part of the process), And then I tried to explain why he was leaving school early one day for an appointment with someone else unfamiliar to us, as part of this thing I kept calling "Guardianship". I chose to say something along the lines of... we have to make sure the state knows that we're taking of you, because some people when they're your age can make other adult decisions. Your Guardianship is to make sure they know we're helping you with those decisions. It was not that exactly, but when he still seemed a little bit confused I said that his aunt did the same thing for his cousin a couple of years ago (my niece with Down syndrome).
We had a lot of hiccups with the Physician Certification portion which I don't have the energy to get into. However, if you are a parent who is going to be going through this in the near future, I will gladly explain and answer any questions I can. I am eternally grateful for the moms who did the same for me! At this point I am just hopeful this necessary evil will be completed soon. We will be in receipt of a hearing date and when the case is filed, a court appointed attorney will be assigned to represent Hayden.
This doesn't feel like a happy occasion to me, but I use this blog primarily for awareness so that's why I'm here! On that note, since Hayden's birthday is a week before Fragile X Awareness Month, we happen to be going through this Guardianship process during a lot of awareness being promoted. And World Fragile X Day is coming up on July 22nd! Be sure to post on social media and tell people why! You can wear green, or any other color in the NFXF logo. You can share informative social media posts from the National Fragile X Foundation's page or photos from FRAXA's page-- they coordinate with people in different cities to have landmarks illuminated in blue or teal for awareness on World Fragile X Day as well.
As in previous years, Hayden has his annual page to support the NFXF. Donations can even add up to a chance for Hayden to win some fragile x swag! Another way to participate in the awareness is to simply share his page through this link!
From grief to Guardianship to gratitude... this is certainly a different parenthood journey than we expected. Yet right on par with both the likeness and uniqueness of Hayden.
--
