Sixteen years ago, I was on the way to the hospital to be induced to deliver my son. I found out when I was five months pregnant that my second child was going to be a boy. I was so excited. I had a 4 year old daughter and now I would have a son (Robby). Life would be perfect. My son would be the captain of the football team, homecoming king, and one day the president of the United States.
Chaos erupted immediately during Robby’s delivery. The cord was wrapped around his neck. He wasn’t breathing. I watched them carry my son to a table to do CPR. As they were carrying him to the table, I saw that Robby’s thumb was hanging. I thought it was broken. I screamed in horror. The doctors just looked down and said “oh”. Over the next hour and a half, I watched Robby be resuscitated 3 times. He made it! My little fighter.
By this time, we knew that both of Robby’s thumbs were malformed. The term was “floating thumbs”. The doctor finally gave me my son. He was a beautiful 9 pounds 15 ounces and 22 inches long of perfection. After watching my son receive CPR 3 times… His thumbs meant nothing to me. He was my miracle. And to me he was perfect. Thumbs can be fixed. Life would still be perfect.
The next morning, Robby had the newborn hearing screening. He failed. I was assured it was no big deal and a lot of babies fail due to fluid in the ears. I felt assured by this and there wasn’t any deafness in our families, so there was nothing to worry about.
Later that morning, Robby was breathing funny. They took him for xrays and off to the NICU he went. Robby had swallowed amniotic fluid during delivery and developed pneumonia. Through the xray, they also saw that Robby only had 11 sets of ribs instead of the normal 12. Again….I thought to myself “no big deal”.
Because of the issues since birth, the hospital did more testing. On the third day of his life, now 2 days spent in an incubator, the doctor came in and told me that Robby only had one kidney. This was my breaking moment. This was when everything hit me. I had a real good cry. I didn’t understand. How? Why? I was healthy, I took care of myself. What could I have done that hurt my son?
After 8 days in the NICU, we got the OK to go home. Now it was time to focus on dealing with Robby’s thumbs and hearing evaluation. They recommended that we wait until he was 6 weeks old to have the testing to ensure the fluid would be gone. I set up appointments with surgeons at Yale, Hartford, New York and Boston. And I set up his hearing test at Yale when he was 6 weeks old.
I met with all of the hand surgeons, and explored all options. For Robby to have full use of his hands, he would need opposing fingers. His thumbs weren’t viable and would need to be amputated and his pointer fingers shortened and moved to make thumbs. This would be a series of 3 surgeries, we scheduled them at 3, 6, and 9 months of age.
At 6 weeks we drove to Yale to get the hearing test. For weeks I had been banging pots and pans and making sounds, sometimes Robby would respond and other times he wouldn’t. I held onto the times he had responded and thought all would be well. We had the test done, and the audiologist came out and told me that my beautiful baby boy was profoundly deaf in both ears. I was in SHOCK. All I could think was that he didn’t know that I loved him because he hadn’t heard me. After 24 hours of crying and screaming. I sucked it up and knew I had to take care of my son and make this world ready for him and him ready for it.
Robby had hearing aids at 8 weeks of age and cochlear implants at a year old. They were not successful for him and he almost died from the rare risk of a spinal fluid leak. We spent 2 weeks in intensive care at NYU following his surgery. And to make matters worse, the implants were not successful for him. We battled the process until he was 3 years old trying to get him to hear.
In the meantime, Robby also wasn’t hitting his developmental milestones. Without the help of any of his physicians who had all basically told me Robby would be nothing, by the time he was 6 months old, he was receiving speech therapy, occupational therapy, physical therapy and vision therapy. He also had glasses because he was diagnosed as having been legally blind.
When Robby was 3 they wanted to fit him for a wheelchair, the doctors and therapists told me that he would never walk, I refused! He took his first steps 3 weeks before his 4th birthday. Around the age of 3, we started learning American Sign Language. After years of intensive speech therapy, Robby still had zero communication besides a picture system. But also….something more was off. Robby was different. The specialists assured me that it was just his deafness and everything he has been through.
He started school at 3. He was in our local preschool, with a one to one aid that could sign with him. When he was 5 it was recommended that he go to the school for the deaf in CT. There he would have full access to learning communication because he just really didn’t seem to have the drive to communicate, he didn’t make eye contact, and he was exhibiting aggressive and self injurious behaviors.
When he started at the school for the deaf, it became VERY clear that the doctors and therapists steered me wrong. It wasn’t the deafness that brought out the strange behavior Robby exhibited. It was definitely autism, I fought and demanded an evaluation by a professional who was versed in deafness. At the end of this evaluation Robby was diagnosed as moderately autistic AND intellectual disability.
While at the school for the deaf, the behaviors increased. It was too over stimulating for Robby to have signing going on all around him at that point. We brought him back to our home school district and focused on the autism as the primary disability with using sign language and pictures for communication. That went ok. But the older Robby got, the wider the educational gap between he and his peers became. The chances of socialization decreased as the kids became less interested in Robby and the more his sign language vocabulary grew, the more he relied on it. He only had one person to communicate with him at a time. His aide or his teacher of the deaf.
Robby’s was VERY aggressive. By the age of 10 I had hair ripped out of my head, broken bones, internal bleeding. He sent teachers and administrators to the hospital from attacking them. He constantly hurt himself. We had behavior analysts in school and at home. But by the time a plan was put in place….his behaviors would change.
I was struggling through life and became very ill. Robby was also a non sleeper, which meant I didn’t sleep. I was diagnosed with lupus. The doctor told me if I continued to live like this, I would die. That brought an intense fear into my heart. I was Robby’s lifeline. He didn’t detach from me. He had no connection to anyone but me. If I died, that would destroy my son. I needed to find a way for him to learn to live in this world without mom. As well as the fact that his educational placement was becoming less and less appropriate.
I started to research other programs and I found out about a special behavioral based residential educational program at the school for the deaf. After a very long fight with my school district and state agencies that resorted to me holding a 10 day standoff at a local hospital and calling all of my legislators and newspapers and news stations. Funding finally was approved for the program before Robby turned 11.
He is now 16, still in the program. He is home on weekends and school vacations. He’s in a sign language rich environment 100% of his life. His behaviors are almost extinct. He is happy. Robby’s diagnosis’s are that he is profoundly deaf, autistic, intellectual disability, legally blind, low tone, Duanes syndrome, he has physical anomalies, medical issues including Wolf Parkinson white syndrome, leaky aortic valve, neuralgia, bouts of mesenteric adenitis, intestinal issues, migraines etc, and he has undergone 26 surgeries.
BUT what Robby IS: He is a handsome, funny, smart and incredibly strong 16 year old boy. He is my hero and my life’s inspiration. He has shown me the strengths that I have, when I fall down….I just have to look at him to stand back up. He walks, runs, jumps, plays basketball. He is even the captain of his special needs basketball team. He attended his first prom last year, with a date. He’s a very talented artist, even has the potential to be famous someday. He is a very loving and kind soul and he even has a sense of humor.
I am so thankful I didn’t listen to all of the doctors and specialists that told me my son would never walk, that he would be nothing and the sooner I accepted it the better I would be. Please don’t ever underestimate any human. We are all special in some way. Robby was and is and always will be perfection to me. He’s my special gift from God.
Robby is now 20 years old, he is profoundly deaf, autistic, intellectually disabled and legally blind. He has undergone 29 surgeries in his life and has numerous medical issues. He needs a one to one support for the rest of his life. Marrakech (A non profit 501C) along with Robby’s mother Sherri, are creating the 1st fully ASL fluent and inclusive group home for this population here in CT in conjunction with North Western CT Community College. We have a goal of raising at least 50k before June to help jump start this program and fill in gaps that the funding doesn’t cover. This project has been named Robby’s Cause. This is for our Robby and all other “Robby’s” that are left behind.
If you would like to donate to Robby’s Cause, you can write a check with COST CENTER 478 written on the bottom of that check, and send it to: Marrakech Inc. at 6 Lunar Dr. Woodbridge, Ct 06525