Category Archives: Planning for Adult Life

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.

 

 

What’s Working?

Do you need to hear good news? I swear, I’ll try to wrap this up optimistically. Bear with me, won’t you?

First let’s talk about “What’s Not Working?”

Ethan!

That’s right. He is not working.

Continue reading What’s Working?

Transportation Woes

Ethan will never drive a car. Ever again.

Occasionally, you might hear a story of a person with Down syndrome with a drivers license. I am happy for them and their parents, but I feel that when a story like that is publicized, it sends a message to parents and the general population that is faulty. I know that it is meant to be encouraging, but the way I work it out, it’s like telling the parents of a typical newborn, “You know, I heard that some of these kids become US Olympians”. I did the math. Similar results. Even if it is possible for a tiny handful of people, it is not a practical probability for most. If you add in all the other folks with intellectual disabilities and adults with autism, you have a whole lot of people who need rides to get to their destinations.

Continue reading Transportation Woes

The Graduation Party

There is no party like a “Midland” family party. Our kids excel at partying 🙂 They were happy to be together celebrating once again.

It took me only a few minutes to notice that most of the parents were wearing similar expressions as we glanced at one another. I was familiar with it – I see the same expression on my own face. ‘Deer-in-the-headlights’ sums it up. ‘Shell Shock’ works as well. We tried small talk. We tried meatier subjects. Someone suggested we take it outside.

Continue reading The Graduation Party

Limbo

Nope. Not the party game. It’s more like the metophoric ‘we-are-not-in-hell-but-haven’t-made-it-to-heaven-either’.

coloring

After graduation, Ethan left the ‘educational entitlement’ segment of his life. The school district is no longer responsible to provide programming for him. He also has not turned 21 yet, which would place him into the ‘adult services’ component of his life. It’s soon, but not now.

Continue reading Limbo

Precipice

Friday is Graduation Day.

Friday, we veer off of a familiar path that we have come to be able to walk in the dark and in our sleep. One foot in front of the other ~ it has been safe, predictable and controlled. It supported us and Ethan in a way that made our lives hum.

14 years.

That is one well-worn road.

We have puzzle pieces to put together, but we don’t have the picture on the front of the box to work from. We need to invent, create and construct whatever it is that is going to build the minutes into hours, and hours into days, and days into meaning and substance.

FullSizeRender

“Here goes…..
better throw my hand in………
wish me happy landing…….
all I gotta do is…………
JUMP!!!!”  ~ Aladdin

Timeline for 2016 Graduates

I opened my email a few days ago from Ethan’s school. It was a modified date for the last day of school.

THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL
THE LAST DAY OF SCHOOL

Continue reading Timeline for 2016 Graduates