The moment I saw our daughter being carried into the Civil Affairs office where we waited, I knew something wasn’t right.
She was 19 months old and couldn’t even hold her head up. We knew she had Down syndrome but, according to her file, she was able to sit up, play with toys, and even hold her own bottle.
But the girl who was put in my arms was as floppy as an infant.
The moment I held her, nothing else seemed to matter. I knew that God had picked this sweet girl to be our daughter and He would equip us for the challenges we will face.
Bonding and attachment with Ivy came quite naturally. She was adored by each of us. We poured out our love for this sweet girl and saw her come out of her shell a little bit each day.
But even though she was making great progress, something always seemed off with her. Ivy was quite delayed for her age. She had no idea how to hold a toy, let alone play with one. Trying to engage her in play was a challenging task. At one point, because of her delayed development, we questioned her age, but after looking into it realized it had to be accurate.
She struggled with being overstimulated with her surroundings as well, which seemed to make progress come a little bit slower. We were often cuddling and comforting Ivy in order for her to feel comfortable where she was. We were repeatedly told by therapists that Ivy should be assessed to rule out other possible diagnosis that might explain some of her delays. By their constant concerns with Ivy’s development, I knew something wasn’t quite right.
Ivy Jane has Down syndrome and congenital heart disease. She was seen by what seemed to be every doctor at our local Children’s Hospital. Finally, after many doctor appointments, tests, MRIs, and blood work, Ivy was given a neuropsych evaluation through the Neuropsychology clinic. As a result of this evaluation, Ivy was diagnosed with Global Developmental Delay.
Global development delay means a child is delayed in at least two areas of their life. Ivy is delayed in cognitive skills, language and speech skills, and fine and gross motor skills. She is now 2 ½ years old and her motor and visual skills are at about a 10-11 month old, while her expressive and receptive language skills are below the 6 month level. As a result of this evaluation, Ivy was also diagnosed with autism.
Autism is a serious developmental disorder that effects communication and interaction. Some of Ivy’s delays, obsessive behaviors, and overstimulated tendencies can be explained by this diagnosis. It is unknown at this time whether Ivy’s autism is something she was born with or is due to being institutionalized. Whatever the reason is, the treatment plan is the same. Ivy is recommended to have ABA (applied behavior analysis) therapy 20-40 hours a week.
Ivy struggles with doing things that most kids her age can do. She is spoon fed since she cannot feed herself, she is on pureed foods because of her oral development delay. She is unable to walk, and she can’t use words for communication. She is very much a baby even though she will be 3 years old in a month.
To help Ivy with her development, she sees many therapists. She visits an occupational and physical therapist once a week and is also starting ABA therapy 12 hours a week. In physical therapy, Ivy is working on balance, core strength, and learning to walk. In occupational therapy, Ivy is learning how to engage in toys more, learning to pick up toys with different textures, working on cause and effect toys, and working on things that might help her when she is overstimulated. Through ABA therapy, Ivy will be working on eye contact, interacting more with people, and communication.
She has much to work on, but has come a long way.
Through love, good nutrition, and therapy, we have seen amazing progress with Ivy. In a year of being home, Ivy has learned to hold her head up, sit up on her own, roll over, scoot on her butt to get around, pull up to a standing position, take two steps, clap her hands, engage in toys, hold a toy, and use a straw. She amazes me with her progress everyday!
Although I expected Ivy to be delayed due to having Down syndrome, I wasn’t expecting her to be quite as delayed as she is. There are definitely everyday struggles that come with developmental delays such as me needing to do more for Ivy, feed her, bathe her, and attend more therapies. My back is often sore from carrying a toddler around and it is quite a lot of work going places.
But the positives always outweigh the struggles and I know Ivy will someday walk and be able to communicate. It may just take a little more work to get to that point.
Knowing that God chose this little girl to be our daughter somehow makes all the extra work worth it. The progress she made since being home has been remarkable and we are excited to continue to watch her meet more milestones.
I couldn’t imagine not having her in our lives. Her infectious smile and sweet little giggles are absolutely adored!
– guest post by Shauna
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