Category Archives: Uncategorized

Help is on The Way

Yesterday, I had the opportunity to take Ethan to “New Jersey Transition to Adulthood Comprehensive Care” or NJTACC. Their websites states that they are:

an interdisciplinary team designed to assist teens and young adults with intellectual and developmental disabilities as they face the challenges associated with their transition to adult services and medical care.

Specialty Care Plainsboro Front View

It was music to my ears, but my cynical side kicked right in, telling me to reserve any hope I might have for after the appointment.

I am very pleased to inform you that I am hopeful!

The clinic is the dream of Program Manager, Stephanie Pratico. Of all Ms. Pratico’s titles, the most impressive is ‘mom’. She herself is the mother of two beautiful young adults with Down Syndrome and to me, that carries more weight than most academic credentials. She expressed to me that she knew this was a necessary service and she was all too aware that parents were struggling with the transition out of the pediatric care and educational entitlement. I am grateful she conceived this idea and I am pleased that Ethan is her first patient.

We saw  Alyssa Siegel, MD who weighed in on Ethan’s medical issues. She was super-thorough, asking ALL the perinent questions and some that had not been posed to us before. She asked me to prioritize the medical issues that were challenging us presently and told us she is prepared to make phone calls and coordinate care on our behalf. She is willing and able to use a patient portal and email for communication and is interested in using ‘Skype-type’ services for future meetings. I welcome all 21st Century support, as it makes life easier and care more accessible.

Dr. Siegel is highly experienced and attentive and I am looking forward to her joining “Team Ethan”.

Ethan was clear he did not want to be involved in the conversation during our visit, but was sure to pipe up and correct me on several occassions!

Ms. Practico asked us where we were with financial and legal issues and was prepared to offer assistance and gather resouces, if needed. Thankfully, we have much of that done, but she did give us some advice on an SSI issue that we had not considered in the past.

One of most unique facets of the program is the representation of the Division of Developmental Disabilities. I have a long list of issues with DDD, many that I have addressed with DDD representatives in the past. The system in NJ is new, complicated and fraught with pitfalls. Many of my interactions with the system have been contentious, ineffective and unrewarding. But, meeting face-to-face and dealing with one issue at a time in a setting where the goal is support and advocacy changed that game altogether. We outlined several concrete tasks that might streamline the process and educate some providers in the system. I was able to hear that my transportation concerns, while they won’t be solved overnight, are a serious and significant concern of the division and some steps are being taken to attempt to make transportation accessible to individuals using DDD budgets.

I am eager to see, if within this model of care, we can make some headway to straighten out the ‘sticky’ parts and smooth out some difficult processes.

My impression, so far, is that this clinic is a great idea, with competant and caring staff, a good location and a nice facilty. It has the potential to fill a HUGE GAP in the care of young people with developmental disabilities. Ethan was honestly, Patient #1 (I like to think #1 Patient :)) So we have some ‘time testing’ to do, but I’m in – wholeheartedly – which is the only way I know how to do this.

 

 

Pay It Forward

Recently, I took Ethan and Sean to an event that I thought they would both like. And they did. Mostly. Then Ethan decided that he needed a Philly Pretzel and then Sean followed suit and then I realized that yet again, I was ‘under-cashed’ for such an event. Dennis gives me grief for not carrying what he deems ‘appropriate amounts of cash’ – which is NOT the $3-6 I often have.

I was attempting to convince both of them that they didn’t need pretzels, but they were admantly arguing the point when a man behind me tapped me on the shoulder and attempted to hand me a five dollar bill.

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A Snappy Dresser

When Ethan was a newborn, I recall being in the mall with him in a stroller. I passed a man with Down syndrome in an outfit I deemed questionable. He had on a Sesame Street graphic tee and his pants didn’t match. I vividly remember my thoughts of how I would ensure that Ethan looked pulled together in public and I wondered why ‘whoever was in charge of that guy’ didn’t do a better job of helping him look better in public.

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Camp PALS – An Ethan-free Week

The planning and preparing that it takes to get Ethan to camp is extraordinary. Thank goodness Camp PALS is extraordinary.

If you have the opportunity to view some Camp PALS NJ 2017 videos, do it.  Then watch them again, make a donation, and recruit some volunteers for them – because the cause is fantastic!

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Dear 2017 Graduates – The Special Education Edition

If you have a child with significant special needs graduating in 2017, people will congratulate you and wish you luck. They will send cards. Your graduate will be encouraged with all manner of exciting and inspirational things headed their way, like ‘new chapters’ and ‘open doors’.

But I’m your friend and I’m here to tell you about the cliff.

Continue reading Dear 2017 Graduates – The Special Education Edition

Trial Work Experience, Oh My!

The services that the Division of Vocational Rehabilitation offers make so much sense. The goal is to mitigate factors that make competitive employment difficult for people with disabilities.  The idea of “Supported Employment” looks like it fits our situation, over here, like a glove. But it is not a glove, it’s cheese…and I am a mouse. I have run the gauntlet in search of my tasty prize – the walls of the labyrinth are made of red tape, long waits, inept agencies unprepared for their stated missions and misinformation. I wrote another post explaining the pitfalls of all this here.

But one sunny day, 13 months after first meeting with DVR, Ethan was offered a spot with an agency that could provide a legitimate Trial Work Experience during which someone would take him out into employment situations in the community to assess if he is eligible to be supported by DVR. Baby steps.

Continue reading Trial Work Experience, Oh My!

14 Years

There is a 14 year age difference between Ethan and Sean and when I find myself watching them engage in some type of cooperative activity on a Friday night, as I sometimes do, I grab my camera and I marvel at the sight. The joy of this is NEVER lost on me. I always feel like I am watching something magical.

I once watched a man intensely watching Ethan, Gavin and Mikey closely at a church we used to attend. “So, they act just like brothers?” The only reason I was not too thrown off by the question was that Mikey was a rather new member of the family and I thought the question referenced Mikey’s status in foster care. “Oh yeah, they’re great, endless games and stuff – they are all really wonderful together.” Then he said, “I have a brother like that.” I knew exactly what ‘like that’ meant. It was Ethan. In just a few moments he explained that his brother, who was older than him was placed in residential care when they were young and he recounted how his playmate was removed from his home and his life. He assured me that his parents had to do that because it was ‘best for everyone’. Maybe it was. Maybe it really wasn’t.

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Colors

I remember the first time I saw Ethan color in a coloring book. He was about 5 years old and had just taken his first pill of an ADHD medication about an hour prior. This is a whole story in its self and sometime I will tell it to you.

I distinctly remembering asking Dennis, “What is that? How do you give a kid a pill and he suddenly develops a hobby?!?! How can that happen? How can a drug facilitate that?!?!?” For several weeks, we called it his sit-down-and-color-pill. The difference was extraordinarily stark – like a flicked switch. Not only did he not color before that trial of medication, he didn’t sit. Or make eye contact. Or lots of other things. But here he was coloring.

Continue reading Colors