“It has been my experience, over the past 20 years, that I learn so much from other parents. I hope that they can learn from us as well. I want to be a resource for other parents who have questions.” – Laura Piazza, Joe’s mother

 

Can you tell us a little about your family situation? What was your child’s experience like prior to coming to Grafton? 

I have three children who are very close in age. My son, Joe, is 20 and is on the autism spectrum with multiple disabilities. He also has a seizure disorder.

Joe has been in several different education programs for kids with special needs. For a while, he lived at home and was transported to other programs. But at a certain point, he needed to go to residential care because the public school could not support him. We would travel several hours each way to see him every weekend.

We had experiences with several residential programs, none of which have been restraint-free the way that Grafton’s is. He did suffer abuse at past programs. There is likely a lot we don’t know that Joe endured during that time; experiences, which caused trauma for him. One program, in particular, started out positively, but we saw a decline over time and regression in his behaviors. We ultimately pulled him out and brought him home.

I home schooled Joe for a while and was reaching my wits’ end. Grafton was brought up to me on several occasions; people told me that it was a great place, so I had to go explore.

It has been an entirely positive experience not only for Joe, but also for the entire family. It is the first time that he has been in a treatment program where they truly care about the whole of the individual – health, education, everything. The fact that Joe is receiving all-inclusive care has been really great for him.

How has Grafton impacted your child? How has he benefitted from being here?

Joe has been at Grafton since February 2018. In less than a year, we have seen him make tremendous progress in everything – from education to behaviors to learning new techniques. He has made progress across the board at school and at home.

Joe has always needed, but never had, counseling with a therapist. The therapist that he has now is phenomenal. She’s excellent with him; they have a great rapport. She’s been great with the family. She’s an asset to the team.

When you bounce from program to program, you have trust issues. Joe trusts the staff that takes care of him at Grafton. He knows all the details about his team. Even when he has time with our family, he’ll be looking at his watch and saying, “I’ve got go home (to his group home).” He wants to participate in all the activities!

You are part of Grafton’s family engagement committee – why is that important?

It’s a first for us. Other organizations haven’t had this. It’s an opportunity to share and to learn – both with Grafton and with other families. It’s a growing experience for everyone involved.

In our past experiences with other organizations, there was no encouragement for parents to support one another. But there needs to be an exchange of information among families. It’s valuable for so many reasons.

For example, it’s very expensive for my family to travel for Joe’s family therapy meeting. But I was recently speaking with other parents who explained that Medicaid actually requires family therapy. They suggested that we call our insurance company to find out what could be covered. Come to find out that, because of the Medicaid requirement, our insurance covers hotels, meals and mileage. That’s a huge expense that we no longer have to spend out of our own pocket! I would never have known that had I not talked to other parents.

What makes the Grafton team unique?

I’ve never met anyone we didn’t like at Grafton. Everybody is dedicated, educated, understanding, patient and caring. We feel like we have a Grafton family, from the case manager right down to direct support at the house.

In December, Joe was singing in Grafton’s holiday show. Rather than making two trips that would require us to manage two sets of logistics and expenses, we asked Joe’s therapist if we could schedule family therapy around the show. She was happy to accommodate us so that we could see Joe perform. It’s those types of things that reinforce my sense of partnership with Grafton.

We even visited Joe at Grafton for Thanksgiving dinner. There was another family, several clients and staff who joined and it was lovely! It was also an opportunity to see how much progress our son has made.

This may seem like a small thing, but it was huge for Joe. At Thanksgiving, everybody got their plate of food and, when Joe sat down at the table, he just picked up his utensils and started cutting his meat. I did a double take thinking to myself, “What, he’s just cutting it himself?!” At home, we would encourage him to cut his food, but he wouldn’t. He always wanted to have someone do it for him.

He’s also learning to accept the word “no.” He is learning to wait patiently rather than getting stuck in wanting something immediately. The staff is able to help him move along. Of course, nobody likes to hear the word no, but they approach it differently by saying, “What we can do instead is…” and offering him alternatives.

Was finding a trauma-informed care environment part of the criteria for choosing the right services for your child?

I don’t know that we specifically sought out trauma-informed as much as we were looking for right combination of people to help Joe. But when we found out about Grafton’s trauma informed approach to care, we thought it was really great. You start to ask yourself “Why haven’t we done this before?!”

How do see Grafton’s philosophy of comfort vs. care with respect to your child’s treatment?

Every treatment approach that we’ve experienced with Joe before Grafton has been hands-on or used seclusion. A lot of them didn’t have a positive behavior reward system. So my initial reaction to was: “How the heck will Grafton do this?!”

Then, I went to the Ukeru training and learned about Grafton’s trauma-informed approach. It was a huge eye opener. We learned how the experience of trauma can literally rewire your brain. I thought about Joe’s experiences in past programs; times he had staples in the back of his head, bruises and cuts all over arms, legs and torso. As a parent, we feel absolutely sick about what has happened and we probably don’t even know all of it. Of course it’s going to have an impact.

To go from that type of treatment and to hands-off was huge. Today, when Joe gets amped up, the staff reminds him, “We’re not going to hurt you. We’re here to help you.” It’s great to see him not have any injuries from someone trying to restrain him.

What would you tell another family considering Grafton for their child?

They should visit Grafton with their eyes and minds open. If it takes more than one visit, that’s OK. You want to see what it looks like in the daytime at school and what it looks like in the afternoon at the group home. Parents need to, and should, feel comfortable about a place where they will be entrusting their loved one. Ask people like me – there is so much I would be happy to tell you about Grafton!