Fionas Story

Our daughter, Fiona, has the duplication of the 13.2-13.1 of what I think was the p arm of chromosome 17.  She is almost 6 years old now and is doing wonderfully.  I have two other children (one older, one younger) that are completely healthy.

At 10 weeks into my pregnancy with Fiona, I had a placental rupture and I bled heavily the whole pregnancy.  They really didn’t think there was much hope of Fiona surviving, but every ultrasound revealed that she was thriving.  She was born with a 9 on the Apgar, 5 lbs 15 oz, and was a normal, happy baby.  She is very tiny still (4% percentile), but a lot of that is genetic (no woman on my husband’s side of the family is over 5 ft)…..We didn’t know to have any concerns with Fiona until she was almost 2 years old and not yet walking… also, although very vocal, she wasn’t making words as much as she should be.  We were told she just had low muscle tone and the lack of language was due to the lack of mobility she had to learn.

She started physical and speech therapy.  She made great leaps in physical therapy and started walking at 2 1/2, but speech was getting more and more delayed.  When she was almost three, our pediatrician had us take her for genetic testing and that’s when we found out about the chromosomal abnormality.  Also around this time, we started sign language with Fiona and she picked it up quicker than we did and it put it all together for her… with the sign language visual cues, she was able to start speaking clearer words and occasionally two words put together.

At 3, I put Fiona is a special needs class (also she spent a good amount of time in the inclusion class) at our state’s preschool program.  She did great.  She LOVES letters and learned her whole alphabet before any of the other kids in the regular classroom.  Up until the end of this year, she spent a lot of time screaming out of frustration of what she couldn’t communicate, but by this time is started lessening.

We also spent a lot of this year doing medical tests after being scared of all the info we found on Trisomy 17.  Fiona is completely medically healthy and I know we are so blessed for that.

At 4, Fiona did our state’s Pre-K program and did very well. The other children treated her like their little doll.  She is extremely social and loving and it is contagious.This year, since she wasn’t completely potty trained, and also couldn’t yet say even her name, I decided to hold her back from Kindgergarten.  She is a Summer baby, so would have been the youngest in her class anyway and at least a foot shorter!  I tried to enroll her in a private Pre-K, but they said they couldn’t handle her after one day.  I then kept running into dead-ends with the public school system and was very frustrated… she was too advanced for their special needs intensive programs, but not advanced enough for their regular programs.  It was about this time I decided to enroll in a Masters/initial certication program in Special Education so I could best learn how to teach Fiona.  I homeschool her this year and I’m getting ready to leave my job (as Education and Children’s Theatre director for a local community theater) to work in the public schools in SpEd– bringing Fiona with me, of course.

Fiona just got released last month from physical therapy and is exactly on track there with where she should be.  She is starting to use full sentences and is comprehending so much more.  Her vocabulary is strong, but pragmatics is weaker.  Her behavior, due to less frustration, is always improving.Our biggest struggle is a blessing also.  Fiona does not look or seem like she has any special needs… she just seems to those who are not experts a somewhat bratty child and looks younger than she is.  When she is frustrated in McDonald’s because she doesn’t understand that the food has to cook before she can eat it, I find myself doing sign language to her so I will stop getting mean stares from other customers.

Fiona is an absolute joy and is a happier and more energetic child than I have ever known or seen.  I learn a lot from her about what is really important in life and her brothers are so much more mature for knowing about how blessed we are to have her and how to help her too.
Submitted by Kate:  Fionas mom