I remember shortly after Vera was diagnosed with Down Syndrome, her pediatrician mentioned that we should consider starting different therapies for her. My internal reaction was, “She’s a baby…how much therapy could she possibly need right now?” I’m glad I didn’t follow that gut response because the biggest reason why Vera has developed so successfully is due to her therapists. I remember how overwhelming it all felt in those early months: the evaluations, the interviews with Early Intervention, the random people constantly in and out of my house. I felt like we had lost all of the stability we’ve worked so hard to maintain. We also spent so much time driving to various specialists and doctors appointments. It just felt like it was never going to end: that we’d never regain the stability we’d grown so accustomed to.

For you first time Down Syndrome parents, or really any parent new to the world of special needs children, please hear this: It.Gets.Better. It really does. I didn’t think it would ever would. I thought we’d spend eternity in appointments and evaluations…but we don’t. So please believe me when I say it gets better!

First, we had to schedule evaluations just to make sure that Vera even qualified for Early Intervention Services. Then from there we had separate evaluations for physical therapy and occupational therapy. Don’t get too attached to the therapists that come to evaluate. They aren’t the people sticking with you for the long-haul. For my fellow E.I. parents, we all know that this whole process is always a hit-or-miss. You can end up with the world’s best therapists…or you can end up with therapists that you don’t work well with. We are probably the luckiest people in the world because not only did we end up with a supportive case manager, but she set us up with the world’s greatest physical therapist (I’m not exaggerating…she’s seriously the best!)

The Therapy Journey Begins

Vera was around three months old when she started PT. With this, she was also seeing a private PT for her torticollis issues. Also, she was seeing specialists for her heart, neck, eyes, and head (flat-headed baby right here!) At the same time, she started therapy sessions at Stepping Stones, a school for children with Down Syndrome. We were so lucky to learn about it because they have offered so much support for us and for Vera! So all of this put together sounds pretty overwhelming, right? It was! But, I’ll say it again: it gets easier. Shortly after she started PT, our case manager was able to set us up with a great occupational therapist. A few short months later, we were on the schedule for speech therapy, too! Our schedule was jam-packed, but at that time I was on a year-long maternity leave from work, our older son was in preschool every day, and my husband received three-months paternity leave. All of these components really helped to alleviate the scheduling and logistical nightmares of all of these appointments.

Let’s Make It Work

With all of the crazy scheduling how did we ever make it work? That first year of Vera’s life is honestly such a blur, but I do believe I have at least a few words of wisdom to impart on new parents who are now in the position of having to figure out how to manage this crazy schedule.

1. Get a planner! I highly suggest The Glory Days Co’s daily planner. It was designed by a fellow mom of a child who has Down Syndrome. It is fabulous! Not only does it have the space for your scheduling, it also has space for therapy notes. It is the perfect planner for the busy parent! You can find one at Glory Days.

2. Ask for help- I cannot stress this enough! We are fortunate enough to have all four grandparents nearby to us and very willing to help us at the drop of a hat. When I went back to work full-time after Vera turned one, the two grandmas became in-charge of Vera’s therapy sessions during the week. They sat through her sessions and reported back to me when I got home. For those that don’t have grandparents nearby, don’t be afraid to lean on friends or other family members to jump in and assist with therapy sessions!

3. Set up a family calendar- we have one that hangs on our fridge. It lists the daily appointments we have, not just for Vera, but also for Miles. It helps us to keep track of what our obligations are each day.

4. Stay consistent! This one is important. When deciding on a schedule with your therapists (for us it was PT, OT, and SLP), make sure they’re each coming to your house on the same day and the same time every week. Make each session a standing appointment. Obviously, things come up and being flexible is important, but in order to maintain your sanity with this new and busy schedule, keep everything the same week-to-week.

5. Create a “therapy space” in your house. It doesn’t need to be big, but just a space where you keep all of your child’s therapy and sensory toys. For us, we had set up a corner in our living room that held all of our baskets of materials needed for our sessions. We also put down foam floor mats for Vera to work on with her therapists.

6. Lean on others for support. There are going to be days during your child’s therapy sessions where they may be difficult for the therapist. They may not show progress or they might cry a lot. In these particular sessions you yourself are going to feel frustrated and defeated. Understand that these feelings are normal and all a part of the process. Reach out to fellow moms of children with special needs. Be on the lookout for local support groups. Social media has helped me connect with different Down Syndrome groups. These are all great ways to find others who relate to your fears and frustrations. These connections are also great for when you have big moments to celebrate (and there will be lots!)

Vera is on the verge of turning three and will soon be aging-out of her Early Intervention therapies. She’ll be making the move to preschool where she will be introduced to a new team of therapists. It’s a very bittersweet feeling: I’m excited for her to grow up and start school, but I’m incredibly sad to no longer have the weekly visits from her three amazing therapists. They’ve become part of our family and such an important part of Vera’s development. I think this is what has been one of the more magical aspects of having a child with Down Syndrome. The people that you become connected with through your child end up being such a support system for your growth as a parent. Just remember that it will be very overwhelming in those first few months, but all of the appointment-madness becomes a sort of “new normal” for you. Honestly, I can barely remember the days before we had people in-and-out of the house all week. It has become rather comforting. This will get easier. You will find therapists that love your child as much as you do. And, if you’re really lucky, they’ll become a part of your family, too. You got this!