10/25/2026
William is Autistic, ADHD, dyslexic with severe anxiety, DMDD and PTSD.
A lot of acronyms that come with challenges of their own individually.
No one presents you with a handbook on raising children whether they’re neurotypical or neurodivergent.
You’re on your own with what you know, information you learn along the way and making mistakes once in awhile.
We’re all human.
However, with neurodivergence, there are sooooo many supports and benefits that are mind blowing, stress inducing and detailed.
We’ve established special needs trusts, x 2.
Are on the PUNS list - for years. (Prioritization of Urgency of Need for Services)
Will be applying for SSI at 18.
Have established guardianship.
With more to come.
I won’t lie, it’s ALOT. It’s daily, weekly, yearly advocacy, lawyers, GALs etc
We have a GAL and 3 lawyers. I could write a guide book.
There are so many rules, regulations, and details that must be abided by through the court system. It’s just too much to list in a Facebook post. Perhaps at some point, I can address them individually and the details behind it.
For now, William has an OBRA trust in which the money can be spent only on him and anything purchased through it needs to be approved by a judge with a lawyer and a GAL overseeing and representing us.
There are many things that these trusts can cover for example cell phone bills, a new bicycle, travel, gaming systems, bedroom, sets, etc.
Aside from having some generalized pre-planned items, additional larger things that come up throughout the year need to be individually approved in court.
We have a court date coming up and are working on getting William a new bedroom set, among other things.
In order to do this, we must present quotes on pricing to present to a judge who then approves a dollar amount that we are allowed to spend.
Where this may sound ridiculous to some, it’s extremely important as some parents would take this money and spend it on themselves to go on vacations etc if not for laws.
Yesterday we shopped for new bedroom sets for William and it was really fun to see him being very specific on style and wood tone.
He has great taste in furniture and requested a dark wood tone, either dark oak or walnut, and a Barnwood or industrial type design.
Specifics definitely made making choices much easier in a narrowed down position.
We went to two separate furniture stores and received estimates that I have already forwarded to our lawyer to add to our request list for our upcoming court date.
Anything approved through these trusts, such as paying for cell phone bills, vacations, etc. need to be reported at a yearly court date where a log of expenses and receipts are produced to the judge so that he can be sure the money is being spent as was approved and appropriately.
There is so much more behind raising special needs individuals than meets the eye.
There are rules to follow, laws to abide by, lawyers to acquire and pay for all in the best interest of your child.
William picked out some pretty awesome sets of furniture and we can’t wait to bring them home and paint his new room in the house as he deserves more space to spread his wings !
This is one of the sets he liked but the other one is the top choice, and we’d like it in our room too!!
