The Spectrum of Down Syndrome

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“How ‘Down syndrome’ is he?”

Yes, I have actually had that question positioned to me on more than one occasion. Today, many years into my relationship with that extra chromosome, it makes me giggle. To be fair, it’s a legit question if not poorly worded. Down syndrome is INDEED a spectrum. The most commonly occurring disability, Down syndrome happens when an extra copy of the 21st chromosome is present at conception. But, what does this mean exactly?

Jessica Turner, my fellow Detroit Mom team member, and I both are blessed with beautiful baby boys that rock that extra chromosome…and they rock it in COMPLETELY different ways. We had a conversation about how our experiences with Down syndrome are so completely different, and how most people just don’t understand how unique it is for everyone whose life it touches. We decided that for World Down Syndrome Day, we would share some things about our little boys to show exactly how beautifully different they are.

What was he like as a newborn? Sleep, eating, etc.

Jessica: As a newborn, Nasim was like a dream baby. He slept great, ate great, loved tummy time, and he rarely cried. He was easily adaptable; we took him literally everywhere. Now he’s a busy toddler and visits to restaurants with him are very rare.

Jamie: Benny NEVER cried and always wanted to snuggle. He would go to ANYBODY and slept through the night at eight weeks. Feeding was a different story. Benny stayed in the NICU for seven days after birth for low oxygen saturation, jaundice, and low blood sugar due to my malfunctioning placenta. We had to bottle feed him high-calorie formula to get his blood sugar up in conjunction with my breastmilk/colostrum. Due to his severely low muscle tone, he also had difficulty latching, and it took us until he was eight weeks old before he was able to latch on and nurse successfully.

Tell us about your child’s development.

Jessica: Aside from speech, Nasim has developed pretty close to his typical peers, so he has enjoyed play dates with other children around his age. He always finds a way to communicate and loves playing with children no matter where they are developmentally in comparison. Occasionally I may have to step in to help him communicate something, but that’s about it; he can definitely hold his own. Nasim started sitting up at nine months old, crawling at 10 months old, and steadily walking at 18 months old. As a baby, he did the usual “ma ma” and “da da” sounds plus babbling, and now at 2.5 years old, he does lots of conversational jargoning. He does have a few verbal words like ball, bubble, thank you, nana (banana), bye-bye, and he also uses a few signs and gestures to communicate his needs/wants.

Jamie: Benny, at five years old, is non-verbal and did not walk until he was 3.5. He also didn’t crawl consistently until he was 2.5. On top of his physical delays and speech delay, Benny is very anti-social with other children. He doesn’t have any interest in playing with them and tends to become very agitated and panicked if too many other children are around.

What types of therapies has your child been in or is in currently?

Jessica: So far, Nasim has had very minimal therapy visits, which actually didn’t start until he was two years old. Since turning two, he has mainly received speech therapy along with a handful of visits to the physical and occupational therapist.

Jamie: Benny has been in occupational therapy, physical therapy, and speech therapy since the age of six weeks old. We did these therapies through Early On of Michigan, as well as through a private office in Dearborn called The Center for Exceptional Families until he was 2.5. At 2.5, we enrolled Benny in a school called Glen Peters in Macomb County. This school is designed for children with special needs, and he gets all the therapies listed above and more daily. Also, we recently received the information that Benny has a dual-diagnosis of Autism and Down syndrome, which most likely is leading to the extended delays in his speech and socialization skills. As of receiving this diagnosis, we are going to start ABA Therapy 25 hours of week in home, outside of school hours, to help with these skills and toilet training.

What advice do you have for a new mom who just found out her baby will be born with Down syndrome?

Jessica: Surround yourself with lots of support. Learn as much as you can about Down syndrome and become familiar with the resources available to you and your child. Joining support groups online, offline, or both can be so helpful. And lastly, don’t be afraid to ask questions and advocate for your child. Trust your intuition as it will lead you in the right direction as you’ll always know what’s best. Remember not to focus on the future what ifs but rather be present in the moment, taking things one day at a time.

Jamie: Give yourself time to grieve. Grieving the loss of the baby you thought you were having is important in getting to acceptance. Your life may end up looking a little different than you imagined, but you will find yourself feeling so lucky that you have the honor of being that sweet baby’s mama. I promise.

As you can see, Down syndrome doesn’t really tell you much about who your child will be. It is just a term, and each person with that extra chromosome is unique. Jessica and I are so happy we found each other because OUR relationship is helping us understand this fact and learn about our babies even more.

Friends, in honor of World Down Syndrome Day, we ask YOU to share your stories! We want to hear YOUR experience with that extra chromosome! Shout out loud how amazing your children are — you never know how much hope and peace your individual journey may give another mama who is just beginning hers.

 

*This story originally published in 2018, and we thought it was an important time to reshare for World Down Syndrome Day 2022. Benny and Nasim continue to grow and thrive in the loving arms of their families. Jamie even published a book! You can check out The Down Syndrome Diary‘s Facebook page here, and purchase your copy of this beautiful book here.

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Jamie is a Michigan girl since birth. Formerly born and raised in Dearborn Heights, MI, Her husband Mark and her live in Chesterfield and have three perfect kiddos. Benny, born in 2013, Ellie, born in 2016, and their youngest Norah, born 2019, are full of giggles and joy! Jamie works full-time from home for a technology company, and Mark is a stay at home dad. After Benny was born, Jamie became an advocate for the Down syndrome community with a fierce passion for caregiver support. She is the President of her 501(c)3 non-profit, The Down Syndrome Diary. This organization sends diaries around the world bringing together families whom have had a baby born with Down syndrome. The diaries are meant to provide support to these families as well as be a resource to new parents just receiving a diagnosis. You can find Jamie's voice all over Detroit Mom, or on her social sites. You can purchase her book, The Down Syndrome Diary, on Amazon with proceeds going towards donations of new copies to new and expecting parents.

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