As a parent navigating the complexities of raising a child with apraxia, many have asked me to share what I’ve learned through this journey. Articulating these lessons isn’t always straightforward. Recently, I have faced challenges that highlight the emotional rollercoaster of this experience—filled with unforgettable highs and devastating lows that can make you question everything about apraxia and its impact. Initially, when our child received the diagnosis, the information I encountered was overwhelming and terrifying. However, with time and experience, I’ve gained valuable insights that I’d like to share:
- Setbacks Are Inevitable.
Your child will occasionally “lose” words that you’ve worked tirelessly to develop. This can feel disheartening, but rest assured, those words will return eventually. It’s essential to recognize that children with apraxia may also experience moments of dysfluency, reminiscent of stuttering, which can be frustrating for them and heart-wrenching for you. - Embrace Patience.
While it can be frustrating to witness your child’s slow progress or to collaborate with therapists and schools, maintaining patience is crucial. Your child relies on your steady support and determination during tough times. Cultivating patience can provide clarity and help you approach challenges more constructively. - Stay Open to Different Therapists.
It would be ideal if your first therapist was the perfect fit, but the reality is often different. Therapists are there to help your child communicate, not to form friendships. If you don’t see progress in a few months, consider seeking a new professional who aligns better with your child’s needs. - Endurance is Key.
This journey isn’t a sprint; it’s a marathon. Apraxia is a long-term condition, and while your child’s needs will evolve, apraxia will persist. You’ll find that your child faces challenges in different areas, like reading or math, just as they did with speech. Support them through these hurdles as they continue to grow. - Expect Longevity.
I wish I had better communicated the long-term nature of apraxia to others in my life early on. It’s important for those around your child to understand that they will likely require ongoing support. Apraxia is a lifelong diagnosis, and there isn’t a quick solution. - Speech Isn’t a Cure.
Once your child begins to speak, many may mistakenly believe that apraxia is no longer an issue. However, it’s essential to acknowledge the countless hours spent in therapy and the fact that ongoing support is necessary. Speech development doesn’t equate to a complete resolution of apraxia. - Your Support Network May Surprise You.
It’s common to assume that family and friends will be deeply invested in your child’s journey, but often that’s not the case. Many parents find support from unexpected places—acquaintances, former friends, or even members of online communities. Cherish those who celebrate your child’s victories and empathize during difficult times. - Therapists Can Feel Like Family.
The professionals working with your child often become incredibly close to your family. For instance, my son recently expressed a desire to invite his first speech-language pathologist, Mrs. Harper, to his birthday party. Their bond is special, highlighting the deep connections that can form in this journey. - Celebrate Progress Over Setbacks.
It’s human nature to focus on what’s going wrong, but try to shift your perspective. Celebrate the milestones and relationships your child builds, reflecting on the journey and accomplishments achieved. Keeping a record of progress can serve as a reminder that you are moving forward, even if the pace isn’t as quick as you’d like. - Every Child Deserves to Be Heard.
A touching moment recently reminded me of the importance of this message. My son, without prompting, traced a magnet that reads “Every Child Deserves a Voice.” When I explained its significance, he simply affirmed, “But Momma, every child does deserve a voice.” These moments of clarity and connection emphasize the importance of support from friends and the community as you navigate this marathon.
As we prepare for the transition to first grade, anxiety is creeping in for both my son and me. His fears about new teachers and less support resonate deeply with me. It’s a daunting change, but I know it’s just another part of our journey with apraxia—one that we will face together, as we have before. Remember to approach each obstacle with determination and don’t forget to live life fully, rather than allowing it to overwhelm you.
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In summary, the journey with apraxia is filled with ups and downs, but the lessons learned and the connections made along the way are invaluable. Remember to focus on the positive, maintain patience, and cherish the support that comes from unexpected places.