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.

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