Love them or not, therapies are super important for our kiddos with Down syndrome. I was thrown into the world of therapies without much prior knowledge.
After Bernadette’s arrival, our world became heart surgeries and we landed ourselves a 2 month hospital stay during surgeries and recoveries. We did not have the opportunity to go home like originally thought because of how poorly she was doing after her first surgery. We were unable to start therapies right from the beginning because of the hospitalization. Bernadette did have a couple of visits from a physical therapist in the hospital as well as a couple of brief visits with an occupational therapist, but all in all, our time in the hospital was spent focussing on other things.
She was on her back a majority of the time, unless I was able to hold her. And even then, her time off of her back was very brief, especially once she had her second heart surgery. And, she was little. When I say little, I mean she was still a NEWBORN.
The therapists that would come by to work with her were often met with a sleepy Bernadette. Or an upset Bernadette. Or a Bernadette refusing to eat. On the rare occasion they actually were able to work with her, it was kept very brief. I was in such a complete state of utter exhaustion, I couldn’t even begin to remember what they had showed me to do with her or what they had said to me. My bigger concerns during the hospitalization were her getting through surgeries and being able to take her home.
Once she was able to come home, it took awhile for us to get situated at home and awhile longer to get her initial evaluation for the Regional Center, who helps organizing therapies. I had known about it since the pregnancy but I wasn’t entirely sure once she was ready how to even go about setting it up. I talked with her pediatrician at one of her many appointments a month after she had been home and we were finally able to get the ball rolling.
Bernadette had an initial evaluation before starting services. She was seen by a couple of different therapists to see what her greatest needs were so that they could provide the therapists she would need to help set her up for success.
Unfortunately, Bernadette was hospitalized once again due to RSV and we were not able to start therapies for close to another month. By this time she was nearly 6 months old. So much of her time had been spent on her back, she had very little neck control or core stability.
She was authorized for weekly physical therapy and feeding therapy as well as a weekly home visitor who works on everything in between. They come to us making it even more convenient! For awhile, before we were able to get set up with the Regional Center, I was taking her over an hour away to start feeding therapy. It was too much. And, it wasn’t weekly which is something I am finding necessary. As she is consistent with her therapists, she continues to make good progress.
I have come to love our therapists. They spend a lot of time with us. An hour each per week. They are great sounding boards, an extra set of eyes on her, the tips and tricks they have up their sleeves are priceless and it’s nice having an hour with each them dedicated to just Bernadette.
Some weeks, I’m not going to lie, I would rather shut the door and hide under the covers and pretend that we don’t have anything to do. I would rather stay in my jammies, hair in a messy bun, reheated coffee for the thousandth time and watch cartoons with my kids. But, I know how these precious hours are benefiting us. Instead of “calling in sick”, I suck it up and open the door when the therapists arrive.
Early on, one of our therapists had asked why we didn’t start with therapies until she was 6 months old. I thought back to all the early days of hospital days and the fog that blanketed my brain for months and months. I told her how soon Bernadette had been hospitalized for her first heart surgery after she was born and how when we got home I didn’t even know how to get the ball rolling. I told her how I was even told it wasn’t necessary in the early days.
Come to find out, even little newborns heading into heart surgery can benefit from starting therapy really really young. Even within those first couple of weeks. There are plenty of gentle moves to help during hospital stays, moves that looking back I wish I would have known about in those early days.
It is what it is now and Bernadette is working with amazing people who are all cheering for her. I just wish I would have known this ahead of time. Sometimes it can feel all so overwhelming and uncertain. Who even knows where to start?
But there are so many wonderful resources to help guide and direct you along the way. I am so thankful for the encouragement I have received from other moms who are a few steps ahead of us, who have been where I am and can point us in the right direction. Who have so much knowledge on therapies and what worked for them and what didn’t. And there are some amazing online communities all there cheering one another on, sharing what’s working for them and what hasn’t.
We are in this together and it feels so great to have such wonderful people helping us along the way!