We received the official diagnosis for Tori..PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified)…AUTISM! Now what? My Down syndrome families couldn’t really help because they never “heard” of this before. Mike and I jumped onto the computer and thank God we were able to get some great results through our research. My involvement in the community helped open other doors in the disability world. I made connections with the local Autism Society, and began scheduling behavioral interventions for Tori. I really lucked out, or at least I thought I had, and was able to attend a conference the local ASA chapter was holding soon after her diagnosis Boy, was I wrong! I picked up some great information, but I came home so depressed, I cried. Those people are Autistic, I told Mike. Nobody smiled, they lacked social skills. What was wrong with these parents?
In September of 2003, Mike & I attended a Down syndrome conference. Mike went to sit in on a workshop for fathers and I attended a workshop about behaviors. I was given a handout with 2 columns on it. One side had a list of “symptoms” for Children with Down syndrome and Sensory Processing Disorder, and on the other side a list of “symptoms” for Children with Down syndrome and Autism”. WHAT??? HEY! As the workshop was proceeding, I was looking over the 2 lists, and as I began to check off behaviors Tori was displaying..there it was. In black & white. Tori displayed 11 of the 13 “signs” of a child with Down syndrome and Autism. Tom was right! I walked out of the workshop, met up with the group we attended the conference with and blurted out “Great! Now we need another doctor!” That day changed our life forever again!
I had given up my career as a realtor and began working at a local day care center so I could bring Tori along. There she could be with typical children and be influenced by them to grow. They were actually the ones who FINALLY got her to walk just before her 4th birthday. I had the opportunity to work with a set of twins who had Autism and really seemed to connect with them. They were unique, extremely quirky, required constant routine, and constant redirection. Between the flapping, and repetition of words, and other behaviors, it hit me..Tori’s behaviors were starting to mirror theirs. I mentioned this to Mike. Now, with eyes opened wide, I realized that Tori was VERY different from the other children with Down syndrome. Yes, she had the characteristics of Down syndrome, she had the physicality of Down syndrome, but her behaviors were so not that of someone with Down syndrome. She was becoming very unhappy in many situations. She did not respond well to change in routine. She hated going outdoors, and would scream at the top of her lungs. She was becoming very tactile and very sensory needy. What was going on with her? Why was she acting like this?
I finally stepped up and asked the Director of the agency who was working with the twins what his thoughts were. I told him about Tori, and the behaviors we were seeing, how much she seemed to mimic the boys’ behaviors and he just looked at me, and said “ Liz, You KNOW what you are saying? You need to get her evaluated.”. WOW! Wait a minute! How can my daughter have Down syndrome and Autism? Those two things don’t go together! I told Mike what I was told, and although I think he knew, too, that something was just not right with her; he was hesitant about the possibility.
Tori was very active and extremely vocal for a child with Down syndrome. Most children with Down syndrome learn to walk before talking, but Tori marched to her own drummer. Her first word at about 9 months was “HEY!” She did the commando crawl to get around..or would roll through the house. She LOVED to spin her head to music (so fast that we would get dizzy watching her), flap her arms and balance on her butt with her feet in the air. She loved the feel of her hair slapping her face as she did this. At naptime or bedtime, she would bang her body so hard in her crib, that the house would shake. We found that this seemed to help relax her and was her way of falling asleep. Not ever having a child with Down syndrome, we never thought anything odd about it. Tori definitely had her own personality. Our dining room was transformed into a classroom of sorts. I had flash cards velcroed to the walls with ABCs and 123s and Shapes. We worked with her daily on learning the basics. And boy, did she LOVE to eat! We went everywhere with her, and things were great.
Tori’s cataracts were removed at 3 weeks and 7 weeks old. Physical therapy started when she was 6 weeks old, and in the months that followed, Occupational, Vision and Speech therapies kicked in and became a huge part of our life. We needed to teach others about Down syndrome and the potential our baby’s future held for her. Things had changed so much since the old days, and people with disabilities were now given the chance to become an integral part of the community. I became very involved in the local Down syndrome support group and Mike and I were constantly learning more and more about living with disabilities. Our families were extremely supportive and life moved on.
Due to Mike’s long commute to work, he took that entire week off thinking she was going to make her entrance. Unfortuantely, nothing changed so off to work he went that following Monday. He left the house at 6 a.m., and I was awakened at 7 a.m. by my water breaking. I called Mike on his cellphone and told him to turn around and meet us at the hospital; she was on her way. Our daughter, Kris, had to drive me to the hospital. When we arrived at the hospital, the entire Labor & Delivery dept. was waiting for us. They couldn’t wait to meet our little one. I was examined, given some pitosin and received an epidural. I elected to have the epi because I remembered being in labor for 36 hours with Kris and there was NO WAY I was doing that again. Mike showed up at about 8:30 a.m., Kris went and picked Monica up from school and brought her and my dad to the hospital. Now, I am only 6 cm. What the heck! I want to say that at about 2:30, I was starting to really feel contractions, and asked for more pain killer. They re-evalutated my progression, said I was now at 8 cm. And it was time to call the doctor. They returned to tell me that the doctor has advised them that I could not get any more pain killers, it was too late. OH MY GOD!!! They began prepping for Tori’s arrival. The contractions were getting more intense and this little girl wanted out! Now, she was fighting to get out of there, and they nurses kept telling me “DON’T PUSH!” Well, I’m not!! She is! When I asked where the doctor was, they stated she was getting dressed and I yelled “There is no time for that…she needs to get in here now!” The nurses were ready to deliver because this baby was not waiting any longer. She was coming NOW and the nurses were ready to catch her! The doctor walked in the room and the nurses told her it was TIME and as she sat down at the end of the bed, 3 quick pushes, Victoria Rose DeSantis was born at 3:15 p.m. on February 23, 2000, weighing in at 6 lbs. 5 oz. She had a head of hair and let out a yell! She was the most beautiful little girl in the world. All of our prayers had been answered; she was healthy! Although we noticed she was born with bilateral congenital cataracts (as was my step-daughter), we considered that to be a piece of cake considering other issues that could have been.
On February 16th we went into the hospital for a version (flipping) due to the fact that Victoria Rose was still not cooperating and was still upside down and backwards. Fortunately, when the doctor did the ultrasound, she had finally turned around and was properly positioned and the procedure was averted. We were now 4 cm and I was now in labor. We were sent home, and just told that when the contractions are 2 minutes apart head on into the hospital and I needed to make a visit to the office every 2 days to check the progression. I remember telling the doctors that if they tell me one more time that there has been no change, I was going to make a bed in the office and wait there.
At our next appointment with the OB, we sat and talked in length about the diagnosis. We asked questions like “Can you guarantee us that she will be healthy? What are the chances of her being incapable of surviving?” Since we were fairly far long with the pregnancy, the doctor said we only had a window of 2 weeks to consider termination. Well, HELL..that thought NEVER crossed our minds. This was our little girl, and we will do what we have to do to give her the best life possible. This is what God has given us and we will survive. With that being said, the entire staff backed us 110%. They were there for us the whole time.
And she would be here in about 20 weeks! We did, however, have a big scare at 10 weeks. I woke up one morning and started bleeding. I was rushed to the hospital. Thank God, the ultrasound showed everything was good. They actually asked if I had drank any caffeine because she was moving 100 miles an hour. LOL!
I only ever knew 1 person with Down syndrome. Johnny was the son of a guy I grew up with and he was the most lovable person in the world. Mike, on the other hand, never had that opportunity. Being a very statistical person, Mike researched everything he could about Down syndrome online. The good, the bad..the unthinkable. The ratios of the most mild to the most severe cases. We hooked up with the local Down syndrome support group and got invited to attend our first Buddy Walk (the Annual Celebration to promote Down syndrome Awareness) that same weekend. Mike & I decided to go and bring the girls along. We needed to jump on board and learn all we could. When we arrived, I broke down in tears again because I felt guilty for grieving as we watched all the families celebrate life!
We sat with the families and what made me feel alive again is when a father asked his 10 year old son if he had any vegetables with his burger. Bryan responded ”Yes, dad. I put ketchup on my burger!” Life was going to be ok!
We had a few followup ultrasounds to take measurements of her tiny body and a fetal echocardiagram to check her heart. Cardiac issues are the one medical issue that can be fatal to these children. Many are born with holes in their hearts, which, Thank God, can heal on their own; but some can have much more severe issues like a missing chamber which is fatal. Tori was upside down and backwards, so the tech had a heck of a time getting a clear view of the heart. I remember the tech pounding my belly trying to get her to move. Fortunately, they saw no issues with her heart. We were on our way to a fairly typical pregnancy. However, getting a good picture at an ultrsound was almost impossible. The little bugger refused to turn around. Thanks to a great support system, we were as prepared as any parents could be and anxiously awaited her birth.
I remember it was a Friday afternoon at 4:15 p.m. when the phone rang. My dad was sitting in the den watching television, Monica was upstairs doing homework, Kris was at work and Mike had just left work for his drive home from NJ. I checked the caller ID and saw it was the Genetics Counselor. I hesitated and then picked up the phone. I remember saying “Hello” and then hearing “Mrs. DeSantis, this is ——–, the Genetic Counselor and we have the results from your amniocenteses. You are having a girl and it is confirmed that she has Down syndrome.” I don’t remember if any other conversation was had. I know I crumbled to the floor in tears. I remember my poor dad yelling for Monica to come downstairs. I remember hysterically telling them that the baby has Down syndrome. The rest seems like such a blur. They called a girlfriend of mine and Monica’s grandmother who both ran right over. I can see myself crumpled on the couch in the den, rocking back and forth crying. I remember crying out “I can’t tell Michael! How am I going to tell him?” It felt like it took him forever to get home and when he finally arrived, I apologized to him. I don’t really remember much about anything after that moment.