On July 16, 1990 the best thing happened to me. I gave birth to my beautiful son, Jesse. What promises I had installed for him. I planned his life before it even started. But God had different plans for him.
Like all new parents, everything was perfect; and so we thought! A couple of months after he was born, I noticed things were just not right. I would mention my feelings to his pediatrician and she constantly reassured me that there was nothing wrong and I was just being paranoid. But my gut feeling told me differently.
I called many doctors requesting to be seen without a referral. I pushed us through the doors demanding to be seen. They all thought I was just a young mother who was scared – and I was. But I believe in perseverance and giving up was never an option. By 9 months I was able to start him on an early intervention program.
Throughout his years, Jesse attended St. Mary’s IAHD in The Bronx. Where he did wonderfully and then he aged out. He then went on to public school. He went to a special needs school. Turned out I was not pleased with the school. Jesse deserved more. I read an article about The Center for Discovery and was impressed. I emailed them a synopsis of Jesse with a request for an appointment. I wasn’t sure I wanted a residential program, but I was curious about the programs. I was hooked after meeting with Admissions and taking a tour. I ran into a few families who spoke so highly of the program and their children’s progression and happiness. I was hooked and returned with my mom, who has always been influential in my decisions. We looked at each other and cried. We found the perfect place for Jesse! Now the next step – getting him there.
After a year and a half battle with the Board of Education, Jesse was given the green light. He moved in a few days before his 11th birthday. This was the hardest day of my life, but the beginning of an enriched life for him. It was the perfect fit. He remained at The Center until he aged out. 10 years of a great education, wonderful therapies, great staff, great people, great friends and a new family; a family of dedicated people who loved him so much. The next hardest day was when I was told there was no room for him there. That changed everything.
On his 18th birthday, I contacted OPWDD to begin searching for facilities near me. This was not an easy task since he was still at The Center. Many agencies thought it was too early to interview. But, perseverance I my best attribute and I met with many. Unfortunately, I soon discovered there was no place like The Center. His name was on the waiting list of a few facilities. Some agencies came to The Center advocating their facilities; this helped. They were able to meet Jesse and then I would go and tour the place and meet the staff. I felt like those parents that go on road trips with their high school children looking at colleges.
Going from pediatrics to adulthood is a huge change. The services are cut by more than half and any additional therapies needed you have to fight for. A good day program is also hard to find. I strongly suggest that before you place your child in an adult home; make sure you have a day program. The wait list can be long if you don’t have one.
I feel that the pediatric programs need to better educate the parents on what they have installed for them. It is a shock. It’s great that they try to prepare the kids but we also need preparation.
No matter how due diligent I was, I thought I found a good place for him. Unfortunately it didn’t work out. I realized that right away. I tried working with them to fix it, but to no avail. I even formed a parent group so that we can work together on these issues. But that didn’t work either. Some of these agencies promise you the world. You must be careful with false hope.
After the first house failed to provide the care I felt my son should have, I decided to move him. I contacted OPWDD. This time I was much more diligent. I even went as far as interviewing the neighbors in the area. Jesse is now at a great place with EPIC LI (Extraordinary People in Care) previously known as Epilepsy Foundation. Lucky Jesse, they opened their doors a few years ago to people with multiple disabilities. They work hard with me to make sure he’s happy and gets the services he truly needs. If I don’t agree, we meet, discuss and come up with an agreeable meeting point. He’s in a great house with wonderful people and attending a great day program. The house he resides in was nervous because he was the first resident to be totally incapacitated, requiring totally dependency. Now they just love him. And he loves them. He may not be verbal, but his face says it all and he’s finally in a happy place!
Jesse is 24 years old and my only child. As a single mom, I struggled with many obstacles that were placed in front of us. We were lucky to have the emotional support from my mom and family. Without them I probably would still be struggling. As much as I know my son loves and appreciates me, I thank him for all that he’s taught me. Because of him, I learned patience. I learned to love and appreciate everything and everyone, especially myself. I learned that no matter how bad things get, a smile and a good sense of humor can help mend it. I even learned to open my heart and be loved (which is how I found my hubby). I’m the lucky one…everyone should have a Jesse in their lives.
I sometimes think back on what I could have done differently, and I know there’s plenty. But the proof is in my son. When he looks at me, I know I did good.