good news, wrapped in a horrible package

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We received Jack’s Tier Assignment from Division of Developmental Disabilities (DDD) and it’s good news. Really shitty, horrible, depressing good news. Jack qualifies for the maximum amount of support as he enters his adult life.

I was initially relieved when I read the letter. Knowing that Jack qualified for enough support to adequately pay for an adult program AND therapy was a relief, but within a minute the reality of what the letter meant set in and I dropped the letter as if it were on fire — it was more concrete evidence that Jack is very disabled and that the State of NJ doesn’t see much opportunity for improvement.

I’ve been living for a few days with the letter sitting on the pile of “important” papers on my kitchen counter. Sometimes I glance at it and am grateful that we are headed in the right direction towards our next chapter, and sometimes just seeing it brings me to my knees. How the hell did we end up here?

I have to remind myself that it’s good news. It is good news, wrapped in a horrible package. 

Jack is the most incredible human I know. He’s not just happy, but for a silent kid, he’s more connected than most people. He’s able to see and hear and walk and enjoy his life. BUT, he is fully dependent with even the easiest of tasks and has significant medical and behavioral issues. Jack’s life is very complicated — he does need as much support as possible and we are lucky that we did not need to fight the State to make them understand. 

It’s good news.

Now we are faced with figuring out what Jack’s adult life is going to look like. We have put in our request for a support coordinator to help us navigate this transition (fingers crossed we get our top choice). We don’t know too much about our options but want to make sure Jack remains living at home while getting adequate physical, occupational and speech therapy and attending a program that’s as energetic and fun as CPNJ Horizon High School. Where is that program? Not sure, but we will find it. And, if it doesn’t exist, we will build it.

It’s good news.

Love, Jess

PS If you missed the lead up to getting our Tier Assignment – CLICK HERE.

Guardianship – Jack made it easy(ish)

I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)