The Parent, the advocate, and the guardian walk into a bar...

Once again we are on the downhill slope; the last lap is being run today until the next race starts…it’s the end of this journey before trekking out on yet another.  This is life, this is my life, and this is the life of an autism parent (or anyone with a child with special needs).  Just when I think I have crossed one barrier, jumped over one more hurdle, dodged one more bullet something else seems to pop up.  My mantra over a decade now has been, “Life was never going to be ordinary with extraordinary children…I am an autism mom,” has serviced me well.  I even wear shirts with the self-made quote on them; it has been my own personal “I think I can, I think I can, I think I can…” as I have walked into IEP meetings, faced off with ignorant people (some even family), gotten through a divorce, and battled the day-to-day sleeplessness that has come with the job of autism parent.  Yet…here I sit today, a bundle of nerves as we wait until it is time to get ready to cross that next bridge to the newest in a long line of life events on the other side, and so here I am doing what I do to cope with that stress…I write about it.  So what is all of this pontificating and nervousness about? 

Well it is about the guardianship process which is part of the important stage of transitioning that must occur as our children reach adulthood.  Guardianship is something that every parent of a child with special needs should look into and consult a lawyer about.  The process varies state-to-state, but will help a parent determine what their options are for their child after he or she becomes an adult.  I am not going to lie, the process is invasive, it can be a lot on an already full plate, and it is absolutely necessary to ensure that our kids are taken care of, protected, and allowed the rights that they so justly deserve.  It is another hat we don along with the other two we already wear since diagnoses and in some cases birth.  Mainstream parents will never totally understand that when we (parents of children with special needs) wake up we are not just parents, but advocates…and as our precious wards turn 18 years old we also must become guardians.  I tell people often (and now) wear three hats:  parent, advocate, and guardian.   The differences are subtle, but anyone can wear the parent hat who cares and loves their children; the advocate fights and stands up for their children’s needs, and the guardian does all of the above within the constructs of the laws based on what their adult child is capable of as well as their medical and financial needs.

Why is following guardianship process even necessary? (and) Why is it different than what we do right now?  Guardianship ensures that our children into adulthood aren’t just taken care of, but are allowed the rights that they deserve under the laws of this country.  So many parents do not know or realize the importance of this process and how little rights we (the parents) have to help them without it; I am glad I had a basic understanding beforehand (not going to lie, I didn’t realize the extent of it though).  Since my delving into this I have since learned there are many parents who are left in the lurch and don’t petition for it.  It doesn’t happen often, but in some cases parents have lost their right to even see their kids because the state they live in takes over and the adult child becomes a ward of the state care system.  Once that happens it can take years to reclaim it and with the amount of stress we carry on a daily as parents it’s something that we really do not need in our lives.  Again, you have to call a lawyer that specializes in guardianship cases, set up a meeting and get the facts about what you need to do and what will be the most appropriate for your child (every child has a different set of needs and this will contribute to what kind of guardianship you will need to have in place).  It is different in every state and the requisites may vary, but along with visits from a Guardian ad litem and lawyers, a list of various and sundry tasks that have to be completed before the child is officially 18 and a court date that is set you will want to get things started as soon as possible.

For me personally, I thought I had started in plenty of time and likely would have, but of course…because this is life and how it works, nothing went smoothly.  There was none of the clockwork precision that I prefer and since Seamus isn’t my only child the needs of his sibling had to be taken into consideration.  Add in the ‘normal’ amount of school interactions and abnormal amount of them (we had a new teacher who hasn’t been on the ball if you will), illnesses, work, and other random occurrences…well, let’s just say I now realize exactly what I am made of and I have counted twenty new gray hairs on my crown that I have definitely earned by the sweat of my brow.  I am proud of myself and stress-managed nicely, years of self-compromises have taught the OCD perfectionist-self how to let go of the things I cannot control (it doesn’t mean I didn’t have moments, it just means that I didn’t fall to pieces when the hiccups happened).  I am grateful for my list-making and bow to my Smartphone as it has kept me on track when I am sure that I would have fallen off of it!  It has all lead me to this point with my son today where in a few hours we will stand in front of a judge and that I will be legally named his guardian.  Although my own personal anxiety is at an all-time high I understand that this is the easy part of this process, that it is standard for all parents of future adults of special needs, and that soon we can get back to our ‘normal’...well for at least three years until I have to do it all over again for Aiden, but I will be a little wiser this time and am a little more forewarned as to what will happen.  My lists are already made and I plan on meeting it head on like everything else. 

So here I sit, typing this blog out, looking into the future as I always do with the hope, the perseverance, and determination that I have always had from that very first IEP meeting and realizing just how far we have come…and even how much longer we have to go.  In my mind, I say to this future, “Bring it!!  I made it this far; I might as well ride it all the way until the end.”

Please feel free to email my blog or Facebook page for questions and I am available to all parents who need a support or a friend while they walk their journeys.  (coming soon blog:  The Longest Walk…Across the Street.)

Some of the things in my state that had to be done:  get an ID card, get a checking account, have references that would be able to speak of my parenting, look into state and federal resources, and find a lawyer who specializes in Guardianship Law. Please remember the process is different state-to-state; Washington is a pro-autonomy state which means they advocate and prefer that the individual with special needs have as much say as they are capable of having in their own lives.  I actually believe this is best as we will all die someday (speaking to the parents) and if we haven’t prepared our children as much as we possibly can we are doing them a grave disservice after we are gone.

What I did personally to help him and I prepare:  I wrote social stories, discussed daily with Seamus what this process entailed, and tried to keep his routine as much as possible while helping him to understand what this was all about.