For My Disabled Daughter, Here are the Non-Traditional Milestones We Celebrated

Ah, milestones. Otherwise known as report cards for parents that we place an undue amount of pressure on ourselves (and our kids!) to meet. You know–those developmental milestones that tell us, as parents, when our child should roll over, sit up, stand up, walk and talk. And honestly, no one told me that hitting milestones is generally an organic process, and as a first-time mama, I had no clue.

And as a mama of a disabled child, there was no “typical” for us. Callie was definitely in the “normal” ranges for some things–sitting up, rolling over, holding up her own head, eating solids, and so much more. But with her disability, she was nowhere close to the milestones for first steps, walking, and running. I honestly think that feeling of having one foot in the “normal” milestones and one foot in the “disability” milestones is what I struggled with the most. For all intents and purposes, she was thriving in a lot of areas and regrettably, I tried to implement the same deadlines for her disability too.

By nine months she should be trying to crawl, she would be able to take some steps (with a walker or prosthetic) by the time she was a year old. By 18 months, she would no longer have PT and OT. When the goals weren’t met, I blamed myself, pushed Callie harder and wallowed in self-pity. If I had the chance, I would gently tell my younger self this: You can’t force society’s milestones on her. Focus on growth and your relationship with her and the rest will fall into place.

I still have goals for Callie, but they are not tied to deadlines like they once were. She’s on her timeline, and I’ve learned to respect it because she continues to surprise and amaze me. Mothering and watching Callie become an impressive young lady, I’ve learned to be kinder to myself and revel in a different set of milestones.

As a parent of a child with a disability, these milestones tell me that Callie and I are doing ok but not only that but thriving.

6 milestones that matter to me in parenting a child with a disability

1. Acceptance

Accepting her amputee journey was one of the most challenging breakthroughs. For many amputees like Callie, the key to achieving acceptance is not focusing on the limb loss but rather the whole person. We’ve made it a focus for her to live her life to the fullest, which helps her get on the path of being comfortable in who she is right now.

2. Accepting help from family and friends

We were very cognizant of how we introduced family and friends to Callie post amputation. Being surrounded by family and friends at this point in the journey can be uncomfortable for some people. She was uncomfortable due to residual limb pain, and required assistance 24/7. We wanted to make sure that family and friends were able to navigate the balance between being bothersome to her and being helpful. Everyone needed some time to adjust to our new situation.

As she got her new prosthetic (and some new found independence), we needed to make sure we communicated when she needed help and also let family and friends know what she could do by herself. And as she’s grown that conversation has adapted and changed.

For us, her accepting the support of her “people” while also establishing her independence is a milestone in itself.

3. Communicating her needs (and wants)

Callie is not shy about voicing what she needs and we decided from the very beginning that she would always have a voice in her disability care. Just because we were the adults, that doesn’t mean that we are the sole decision makers in her care. She has become very comfortable articulating her concerns, thoughts, needs, and wants when it comes to her care which makes me thrilled to know that when she is an adult and navigating her own care, she will be able to succinctly tell her health care team what she wants.

4. Voicing her preferences

Like asserting that she wants to be included in her earlier prosthetic leg builds. Or that she wanted to keep the pattern on her leg as the iconic rainbow leopard print. I was talking with my husband about the excursions/activities we wanted to do on the cruise we took over the holidays, and she immediately jumped into the conversation . We discussed a catamaran to snorkel could be a cool experience while in Roatan. As a young kiddo, she didn’t often voice her preferences and mostly went along with whatever we, her friends, or the group was doing. This told me she didn’t want to be left out, and she enjoyed being a part of the group when activities were being planned.

5. Showing independency

Like putting on her prosthetic leg by herself. When she was younger, either myself or my husband would put her leg on for her each morning. These days, she’s fully in charge of getting herself in and out of her leg, managing her leg care, and is an active participant in her 504 planning. These show increased independence for many reasons: owning her disability care, practicing self care/healing, and advocating for her unique needs.

6. Advocating for herself

One of the most important milestones for us, was Callie advocating for herself. We have seen glimmers of this in her childhood but it’s really flourished now that she’s older. She is very comfortable sharing her experiences, asking for modifications or adaptations, and expressing what she needs to move around in the world. Whether that’s a chair during an assembly at school (instead of sitting on the floor), a change to her prosthetic during a visit at Hanger, or explaining to a room full of elementary kids what a disability is–she is confident and competent in advocating for herself.

Parenting a child with a disability is no easy feat, and for a while, the fear of Callie not achieving certain goals within a specific timeline (or at the same pace as her peers) had me under immeasurable pressure. But now, for me, all these milestones are reasons to celebrate. For we are on her path, not anyone else’s.

And that’s reason to celebrate.