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Hi, my name is PJsMom2022. I'm here because I’m a single parent with a child who has been diagnosed with Down Syndrome and would like to connect with others in my situation.
There are times when I wish I wasn’t driving to another therapy, another doctor’s office, another sleep study.
There are times when I find myself breaking down in tears on the ride home from a tortuous lab draw appointment thinking that this is my life now.
There are times when I just wish my four year old non verbal daughter with Down syndrome would be able to tell me about her day at school on the car ride home.
There are times when I wish she could just do the simplest task like unzipping her coat.
There are times when I question are we doing enough therapy for her? Are we practicing her therapists’ suggestions enough at home?
There are times when I wish she would just eat and drink like a typical kid and not need me to load her fork for every bite or hold a cup up to her face.
There are times when I compare my child with other children with Down syndrome and at the same time be very proud of the things she is doing but also very concerned that my child doesn’t do “that” yet.
There are times when Abby’s giggles snap me right out of a bad mood.
There are times when I am thrilled when I get glowing reports from her preschool teacher and therapists.
There are times when she performs in school shows with her peers that let me know that she will find her place in the world.
There are times when she wakes from her nap smiling from ear to ear that my heart simply explodes.
There are times I could just stare at her for hours as she watches and reacts to her favorite books and shows.
There are times when listening to her try to say words or attempt to put multiple word sounds together makes me feel so proud.
There are times when I am amazed watching her try and enjoy foods at 4 years old that I didn’t try until I was in my 20s.
There are times when seeing her grab her toy vacuum and pretend to clean right alongside me tells me I’m going to have a friend for life.
Let me say I’ve only been a dad to a daughter with Down syndrome for 4 years now. Her name is Abby and she is our first and at the time of writing our only. She will become a big sister very soon!
Abby is our world. She is 4 years old and a real firecracker. Energetic, super smart and overall happy but does have her meltdown moments. She is also non verbal but knows close to 200 signs. Most of her days are spent with speech therapists trying to work on sound production and navigating her “talker,” otherwise known as an Augmentative Alternative Communication device. She is making great strides, just this October she said her name clear as day for the first time.
This was not the exact life I had pictured living and if you’re reading this, you might be in a similar situation. As I stated, I haven’t been a dad for that long so my experience parenting a child let alone a child with Down syndrome is limited. But the moments I shared in the beginning go through my mind on a daily basis. Perhaps we have a few shared experiences. I’m sure one could mention that the concerns and worries I have could also be applied to parents’ of typical children. That’s fair, but life hits a little different when you have a child with special needs.
In these 4 short years Abby has taught me so much about life. Most importantly, she has shown me how to slow life down and to live in the moment and to appreciate every milestone no matter how small and celebrate it. To the parents of a child with Down syndrome, this is not the life you planned, I get it. But life never really goes to plan does it?. There will be times when you want to break down. There will be times filled with worry, concern and regret. But there will also be times of unconditional love and extreme joy. Life will certainly be challenging but life will be good.