My name is Liz and I’ve been married to my high school sweetheart, Matt, for 24 years. We have been blessed with 7 beautiful kids. We are a unique needs family with Down syndrome, autism and other disabilities enhancing all of our children and I wanted to share a Cliff’s Notes explanation of my blog Our Version of Normal for any new readers.
Our version of “normal” started almost 23 1/2 years ago when Matt and I decided to start adding to our family. We’d only been married a short time, but had been together for several years and were very excited to become a mom and a dad. We thought it would be a breeze for me to get pregnant. We’d already excitedly planned how many children we would have and how we would space out their births appropriately. We quickly learned we were not in control and after many not so fun fertility procedures, we were finally blessed with our beautiful boy, Riley.
Two years and five days later our twin boys, Reagan & Kaelan, arrived 5 weeks prematurely. They were in the NICU for 2 1/2 weeks for various issues common with prematurity. Once they were home, they did very well until just after their first birthday, when we started noticing delays, personality changes, withdrawal and quirks with both boys. They started receiving Early Intervention at 2 years of age and then moved on to the public school system’s Developmental Preschool at the age of 3. They were diagnosed with autism by the school system at that time, but we also went to a local Children’s Hospital for a full day evaluation to be done on both boys to get a more formal diagnosis (examined and evaluated by several different specialities). Once it was confirmed they did indeed have autism, we bombarded them with intensive private therapy including speech and occupational therapy that we had to privately pay for because insurance companies did not cover anything related to autism at the time. We did not do ABA therapy since it was fairly new back then, extremely expensive and there were very few well-trained people to administer the therapy. Instead they attended a private developmental preschool (with ABA and Floortime elements) and the public developmental preschool. They were very busy boys and we thankfully saw great improvement.
Even though chaos reined, we really wanted another child (a girl would be nice!). After several more high tech FAILED procedures, we were shocked when I turned up pregnant on my own with our sweet baby girl, Lily. She was almost 7 years younger than the twins. We learned at her birth that she had Down syndrome, a heart defect called AV-canal defect and strabismus of her eyes. Her heart was repaired when she was 4 1/2 months old and her eyes were surgically worked on to help with her strabismus when she was 16 months old. She followed in the twins footsteps with many intensive therapies every week to help her gain skills and speech.
When Lily was approaching her 3rd birthday, we decided to go a different route to add to our clan. International adoption. After discussing and weighting the pros and cons of different countries, we choose Guatemala. So we started our year long stress-filled adoption journey to bring home our 2nd daughter, Izzy. After many delays and mishaps, Izzy arrived home in July of ’07 at 7 months of age and promptly broke out in chicken pox. Crazy stuff. You can read more about our reasons for adopting here: Why’d We Adopt?
During our adoption of Izzy, we discovered children up for adoption who had Down syndrome living in orphanage all over the world. Knowing what a blessing these chromosomal enhanced kids were, we committed to adopting a little girl, who had Down syndrome, from Ukraine about 10 months after Izzy came home. Dasha was 5 months older than Lily and was 5 1/2 years old when we saw her picture on the homepage of Reece’s Rainbow. After a quick home study update, we sent our required dossier over to Ukraine to adopt Dasha. A few days later, I found out I was pregnant (another shocker) at almost 42 years old. We travelled to Ukraine in September ’08 for 2 weeks and my husband, Matt, traveled back after the required wait period after court to finalize the adoption. He brought home Dasha on October 30, 2008 and our adoption journey was 5 months from start to finish.
While we enjoyed many firsts (first birthday, first day of school, first Christmas, etc.) for Dasha that year, we also celebrated the birth of our youngest son, Leo, on April 1st, 2009. Our April Fool’s baby came 3 weeks early and officially became known as the caboose of the family. He was formally diagnosed with autism when he was 3, but informally diagnosed when he was just a year old.
3 kids in 21 months = zero memory so I’ve kept my blog up as a virtual baby book, memory keeper, scrapbook, adoption journey memoir and a place to share what it’s like to raise a big family of kids with disabilities sprinkled throughout their DNA. The disabilities range from mild to significant, but include autism, Down syndrome, ADHD, anxiety, Elher’s-Danlos syndrome(EDS), Hemihypertrophy, hypothyroidism, congenital heart defect, leg length differences, low muscle tone, moderate hearing loss, apraxia of speech and speech delays in general. The official tally in our family on the autism front is 4 and Down syndrome 2. This includes our daughter, Lily, who has a dual diagnosis of ASD/Ds. Currently, our kids ages now range from 20 down to 6 as time speeds by..
I hope you enjoy and/or find my blog helpful. If you have any questions, please ask away by emailing me at [email protected] and I’m happy to answer them.
I’m a stay at home mama to 7 uniquely enhanced kids, married to my high school sweetheart for over 24 years. Down syndrome, autism, ADHD & adoption make my world go ’round and I’m sharing our version of normal.