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.

July 2019

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Yesterday afternoon Dan, Jack and I were cooling off in the pool when I realized it was the first quiet moment we’ve had all month. We were too tired for much conversation, but we all had smiles on our faces. Massachusetts, Block Island, Colorado, New Mexico, a party for Jack’s school friends to celebrate his 21st birthday, and more houseguests that I can count. We are all exhausted, but grateful for everyone in our lives who helped make all this fun happen.

For a family with more than our share of “complications”, we always seem to have a lot to celebrate. I’ll write more details about our summer adventures (and some exciting things coming up in August), but for now I will share some photos. Enjoy!!!

 

Love, Jess

PS Anna didn’t enjoy our quiet swim yesterday, because she had left for Block Island for a couple of weeks. When I grow up, I want to be Anna;)

 

NJ CAT

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If you’re not part of the Special Needs World you might think that the NJ CAT is some sort of cat-loving, youtube channel for New Jersey. It’s not. It’s something every special needs parent dreads. I completed it last week. The good news is —  I survived.

The NJ CAT is the assessment used by the Division of Developmental Disabilities (DDD) to determine an individual’s eligibility for services. With Jack’s 21st birthday looming and an adult program needed starting next June, we were required to get it done. CPNJ Horizon High School, always there to lend support, allowed me to complete it while sitting with their social worker and Jack’s speech therapist so that I could get through it without losing my mind.

It was still hard.

The test unravels as you take it. If you answer that your child has trouble with speaking, questions get more specific. Can they speak clear enough for a stranger to understand?, Can the speak clearly enough for you to understand?, Can they speak simple three-word sentences?, Can they say a word? When it came to eating: Can they cook and feed themselves without assistance?, Can they use simple kitchen appliances?, Can they use utensils safely?, Can they feed themselves independently? The questions go on and on. 50 pages worth of questions proving just how challenging Jack’s life is.

I was told to be honest. The DDD needs to know exactly what Jack’s needs are so that he receives the adequate funding for an adult program/therapy/etc. The questions didn’t allow for anything but honesty. If Jack was left alone, what could he do? Not much. I wanted to write that Jack’s smile says enough to know what he wants for lunch and that, although he can’t make himself a sandwich or use the toaster, he sits on his island stool and cheers me on with his eyes. I wanted to say that, although he can’t dress himself or brush his teeth or wash his hands or take himself to the bathroom or drink from a cup that he’s the most amazing human I know. 

While I took the test, I kept thinking that they were missing part of who Jack is. There were no questions about his ability to make people laugh or know when I need a hug.

For 12 years I have been Jack’s biggest cheerleader and being forced to answer the NJ CAT questions honestly was depressing. It only took an hour, but even four days on Block Island didn’t erase the dread about the new chapter that is beginning with the NJ CAT. Twelve years into this new life and we have always been so lucky with Jack’s day to day life. Thanks to the help of family and friends and Maria and Lilly and Monica (Jack’s other mothers) we’ve created a wonderful life at home and then the schools we’ve found have been extraordinary. First The PG Chambers School, where we arrived lost and scared and they taught us all how to accept this new life. And, CPNJ Horizon High School where Jack has thrived and they’ve taught our whole family how to embrace and celebrate every ounce of this life (or, MOST ounces – maybe not EVERY ounce).

Now we’re approaching the next chapter — having an adult child with special needs. No more schools with plays and proms and petting zoos. I’m sure we will find a good fit, but I wonder if any adult program can begin to replicate the warm environments that his schools provided.

Because of Jack’s late summer birthday, we get some extra time to prepare, but this time next year he’ll be heading off each day to something else. I’ve got to start hustling to find the perfect plan. I’m never great with change and I know this is going to be a tough one. We are lucky JackO always seems to make these adjustments with ease – and his magical smile.

I’ll keep you posted on what we see.

Love, Jess

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