The Prieto Family’s Journey: Birth to 3
(Note: This presentation can be viewed a segment at a time by clicking on the links at the bottom of this page.)
Before Gabby came into our lives, I was pretty much living the life that everyone else was. I was working sixty hours a week at Target as an executive manager. My husband and I were newly married and we were expecting our first baby. I gave birth to Gabby in October of 2001 and we had no knowledge that she had Down syndrome before we had her. It was just a very chaotic time in the hospital, finding out she had Down syndrome and…and dealing with the different influences from the nurses and doctors. Just simple things like I wanted to breastfeed my baby and I was told by the nurse, “Oh honey, babies with Down syndrome don’t breastfeed” and they took her away to the nursery. And I remember feeling like already I was being told of all the things that my child would never do because she had Down syndrome and she was two hours old.
Over the next 5 days in the hospital, as Gabby underwent screenings for heart defects, kidney issues and photo light therapy for jaundice, we worked at breastfeeding. While we were there, the hospital social worker and our genetics team were helpful with giving us information. We were briefly told about the Alta California Regional Center and the Infant Development Program and that they would be calling us. I was also given the number of the Down Syndrome Support Group leader.
Once home, we struggled with many things. We made the decision that I would not return to work. We struggled with ways to tell our family and friends and I spent a lot of time crying, afraid for Gabby’s future, wondering how hard everything would be for her. My family's only reaction was, “We still love her.” I was numb. Of course I loved her, that wasn’t the issue at all…I was worried about her.
Early Intervention Services Begin
So Gabby was about four weeks old when we had our first visit, and within that four weeks I really hadn’t put a lot of thought into her having Down syndrome. Like I said, we were just busy adjusting to life with a newborn so it was not on our mind a lot. And to have these people come into our home and sit down and start talking about disabilities and programs and services. I was pretty overwhelmed and I remember just breaking down and crying, and I left the room and I came back and apologized and I said, you know, I hadn’t thought of her as having Down syndrome. I have just been thinking about her and feeding her and changing her diaper and…and those basic things that you do when you have a newborn and…and I didn’t…I forgot that she had Down syndrome. And they were so reassuring and they told me, “you know what, that’s exactly how it should be because she’s your baby first and that disability comes second.” So, I felt like already there was this kind of, like, okay I was doing something right already from the beginning. So I just felt very reassured from them from the very beginning, and um, they were so just really knowledgeable and explaining everything to me and patient, and so we agreed to services.
I believe it was one time a month I had an infant teacher come out, and then an occupational therapist come out and a nurse come out for about once a month. And they just worked on basic things. And at first I didn’t understand what they would be doing, I had no idea what they would be trying to teach me or my daughter. She was only, you know, two months old at this point so, um, the more they came out, the more I learned that they were just incorporating things into our daily life that would help her and give her an advantage to meet her milestones. So I really like that they were teaching me things to do with her on a daily basis and not just coming in and trying to manipulate her or…or do a therapy on her. It was ways they were teaching me things to do everyday with her to help her.
At three and a half months old, Gabby had her first milestone – she nursed for the first time! I was ecstatic! After calling my husband, I called Maurean; I knew she would understand how hard we worked for this and how happy we were. Gabby nursed and she was doing what we were told babies with Down syndrome don’t do.
Everyday Life with Service Providers and Support Groups
When Gabby was about five months old we moved into a different house, so we changed teams and Maurean, who was our previous infant teacher, brought Jamie, our new infant teacher, over and the minute he walked into the house I just knew he was a perfect match for our family. He was very positive and…and just our personalities matched and I knew that he would be a great fit for our family. And he was just always focused on Gabby’s strengths, like that was his biggest focus throughout our whole relationship was wanting to build on her strengths, to help her with her weaknesses, so Gabby likes to match pictures so we used that on ways she could communicate her daily needs.
I remember talking to the support group leader very early on right after we had Gabby. I didn’t attend a meeting until probably she was about six months old and it was just a different experience for us. Gabby was meeting all her milestones, she was sitting up and doing all these great things and I don’t know if maybe the other families hadn’t had that experience. So I was pretty uncomfortable that there was this group of people that focused on things that their children weren’t doing, whereas our family always focused on things she was doing. We celebrated every achievement and milestone that she met.
After attending a few meetings and talking to more and more parents, Jorge and I did some more research, talked with Jamie and Jennifer and had Gabby assessed at American River Speech for speech and oral motor therapy and at Sutter for Physical Therapy. We were really happy with the speech therapy and noticed a difference in Gabby’s mouth posture and jaw strength. We tried PT for a while, but it was long drive, once a month, and Gabby was having a hard time adjusting to the therapist. So we explored the world of warm water therapy. Gabby loved the pool and her therapist. It was that constant reassurance from Jamie and Jennifer that gave us the strength to turn away from traditional PT and go with something that Gabby responded so well to.
At about 1 year we upped our visits to weekly. Jamie was really tuned into Gabby and what her strengths were and using those to build up her weakness. I never felt that Jamie and Jennifer were trying to fix her, as I do not see my child as broken. They were merely giving me tools to help her succeed. I also attended a six-week sign language class through the Infant Development Program. I had already used some basic signs with her and just wanted to broaden my vocabulary. I knew how effective signing was for babies; I just didn’t think I would still be using it with my four year old. But we have also come to realize that it is fine…that Gabby communicating is way more important than her speaking. Her signing I LOVE YOU means just as much as if she could say it. I loved being the one to ease her frustration and help her communicate. It was empowering to me.
At this time, I started to attend some Family Connection events. I wanted the connection to other families. I was in a happy, secure place and wanted to be able to talk to others who might be going through what we went through. I attended summer swim and play dates at the center. This was great opportunity for Gabby to interact with other children.
When Gabby was 18 months old I became a parent leader. I was passionate about the Infant Development Program and its belief that the parent is the ultimate teacher, therapist and role model for their child. I wanted to be a liaison for parents and the staff, talking about what families needs were and helping families to understand the IDP’s role in their life. We had many fun events; trips to pumpkin patches, trips to the mall to see Santa, the museum and zoo. And monthly play dates at the center. This was a great way for families to meet additional staff and be in a new environment. At this time, I also became the group leader for the Down Syndrome Support Group. And just when my life got really busy, Gabby hit another milestone and started walking at 21 months. Thank goodness, because we were expecting our second baby in a few short months!
Family's New Adventures
When Gabby turned two we had her Individualized Family Service Plan and it was a chance for her outside therapist that she had and her SCOE Infant Development Program team to come to our house and it was just a really positive time for us to reflect over the past year and talk about all the goals that she met. And again, my husband and I like to brag so it was a great chance for us to talk about all the great things that she was doing just day-to-day, and it was a chance to take all these great things that she was doing and set another year of goals with her. And for us it was really enlightening to have all this knowledgeable professional help behind us. We were first time parents so it was a great experience for us.
In December of 2003, Gabby’s little sister was born. Never once were we worried about having another baby with Down syndrome. To be honest, I was scared of having a “normal” baby that cried all the time and didn’t sleep through the night. One of my favorite memories of being a mom is the day after I had Lucy and Jorge brought Gabby to visit. I had never spent the night away from Gabby and my arms ached to hold her. She crawled into bed with me and she sat there and held her little sister. Gabby looked like she couldn’t be happier.
Gabby started her Marvin Marshall Head Start Preschool when she was two months before turning three. I was the type of parent that was very nervous about her going to school. I…I never thought I would be sending my three year old to preschool, let alone my child with disabilities, so I was pretty nervous to let go of some control over having her in my life day-to-day. But that preschool was such a perfect match. And again I think that went back to Jamie knowing us so well and knowing what we wanted for Gabby that he recommended this preschool. The first time we visited, we loved it, Gabby loved it, jumped right in, just became a part of that class and their very nurturing and loving environment there. And they do signs with her and they do picture icons with her day-to-day to help her communicate and help her pick her choices. It’s just a really good match for her.
The day we visited, I never realized that there were any other children with disabilities in that classroom. The way they worked their curriculum into meeting all these children’s goals was really great. Nothing stood out like, oh, they’re working on this to help this child. It was just so part of their day–to-day routine and that’s what I loved about it.
We adapted our IFSP so that Jamie now did his home visits at Gabby’s school. It was so wonderful to know that he was there to give us a full report. I loved reading the notes he left for me in her backpack about how she was doing. This was a constant reassurance to me. He also worked on a communication board that Gabby uses to pick her work time activities. We still have friends that are surprised that Gabby is in a regular preschool, and my response back is “Why wouldn’t she be?”
A Family's Perspective on Life and a Child with Special Needs
Looking back over my life, I think that four years ago I would never imagine that this is where I would be.
This past summer I attended some conferences on Down syndrome and I learned a lot about how I want to perceive my daughter and how I want other people to see her. I really think that disability is a natural state of our population and that 50% of Americans will become disabled at one point in their life. For me it’s really important about how I talk about my daughter for her self-esteem and realizing that people with special needs don’t want to be special, they just want to be treated equal. It’s very important for our family that we treat Gabby just like we would her younger sister.
So, definitely at a different place in my life that I would never have imagined four years ago, but I really think because of people like the Infant Development Program helping me and guiding me and answering questions and offering support that I can totally embrace where I am now and feel very comfortable about it and celebrate all that it has to offer.
(Video Clip Conversation)
“Oh Hi-Five? Gabs” “Sissy wants five” (laughing) “Okay”
“Somewhere right there” “ In this area right here” “Right over here, keep looking right over here Gabby”
“Six, seven, eight ohhh!!” “Oh no” (laughing)