Our little Lady with Down syndrome…..

My name is Michelle and amongst other things, I am a mother to three children; one of which was born with an extra chromosome.  We began our journey here at Gigi’s Playhouse shortly after we moved to the Madison area in October of 2016.  We have been blessed enough to not only enjoy some of the classes and meet-ups, but have had the pleasure of being enrolled in the Animas Speech Therapy classes here at Gigi’s Playhouse.

To understand how much this means to us, you must need to understand our family, and most importantly our little lady with Down Syndrome.  My husband and I met in high school.  We married when I was a senior in college and started a family shortly after.  Nyssa has an older brother that is fifteen.  He is a high school freshman who enjoys being a teenager:  playing video games with his friends, biking, playing with our dog or his kitten, skiing and since they day they met has been the biggest supporter of his little sister.

I’m skipping forward to the addition of our youngest child, six-year-old A..  A. is a talkative, creative little extrovert who loves to cuddle, practice gymnastics, sing along to “girl music,” play with her Barbies or ponies and enjoys a good game of Memory.  She is still trying to comprehend the cognitive differences in her sister and why her ten year old sister isn’t quite like the older girls she sees at gymnastics, school or other places.

N. is our spunky ten year old girl. At DisneyWorld she met the same princesses she loves to watch on her kindle, and the full-size version of her favorite stuffed bear, Lotso.  She could happily spend all day swinging on the swingset and has sneaked out to the back yard to swing (fortunately the yard is gated and it doesn’t take us long to find her giggling as she pumps her feet and flies through the air on the swings).  N. loves to watch animals and look at pictures.  She loves the color pink, she would choose a pretty dress over any other choice of clothing and is very partial to dance music with a good beat.  If you play Taylor Swift or Katy Perry you may get to hear her singing along and rocking back and forth as she dances.  She loves to eat potato chips and ice cream and never gives up a chance to take a selfie with me.

But along with the amazing things about her one of her challenges is speech.  Prior to moving to the Madison area N. went to an elementary school that underwent through a high staff turnover.  We did not live in a high income area and she did not have a lot of consistency with staff.  I can count at least five speech teachers from Early Childhood to third grade.  She was able to work with the same special education teacher for two years before we moved, but we didn’t have extra time or financial allowance to add in additional speech therapy as both her father and I worked and any “extra” time was spent on medical appointments.

Speech is N.’s biggest struggle.  We use some baby sign language, but mainly communicate through a combination of pointing, word-like sounds, and knowing that our daughter thrives on repetition.  She speaks very little, almost toddler level of communication that only her immediate family and close friends or teachers can understand, but it is difficult for others.  While N. is very introverted, she still has the desire to talk to others.  When she is mad or we cannot understand her, N. screams.

When I read about the Anima Grace speech program that was available through Gigi’s Playhouse I immediately signed her up.  N. is familiar with the center and it was an opportunity we could now manage to fit into our schedule and thanks to the grant, we were able to afford.  We started the sessions in October.

I cannot fully express the gratefulness I have for this program and for Kayla as a teacher.  Since attending the sessions N. has doubled the amount of words that she can say, she is excited to work on new words and/or concepts.  She smiles more and I have no problems with transitioning her to the speech lessons, whereas sometimes a trip to Target will start with a meltdown.

Through this program N. was able to trial a communication device- which she adapted to very quickly. She has so much fun at her speech therapy that I don’t often have to pull her away from the toys in the playroom, but she knows she is able to use her “talker” to tell Miss Kayla what she wants to do for the day in speech.  We’ve had sessions where our stomachs hurt from laughing so hard catching bubbles, dancing to Gwen Stefani, sorting through tiny objects, playing catch with a small ball and one of our favorites is creating a small band with the drum, xylophone, piano and maracas.  As a parent it means the world to have that extra hour of time to work on her speech and language, but also just spending time with her and discussing how we can incorporate these techniques into our daily life at home.

While having a child with Down Syndrome, can be challenging at times, it is by far one of the greatest gifts I was given.  I no longer see life through a filter, but I’m grateful for the little things, such as asking for more bubbles or when she can use the communication device to tell me to “stop” instead of screaming “noooo!”  Because she can’t quite tell us how much fun she’s having, I’ll let the photos I’ve taken during sessions describe it.  Thank you for hosting these one on one speech lessons and if we only managed the two I’ll forever be grateful.

Michelle