Special Needs Parenting

Maya’s arrival in our family brought new dimensions to our parenting journey. Diagnosed with a rare condition called Dup15, Maya requires extra care and attention. From her condition she also has the diagnosis of Autism and Epilepsy. Integrating her into our routine was challenging initially, but it has also been incredibly rewarding.

I’ve always sat on the opposite side of the table when it came to IEP meetings. Now advocating for Maya, it can be overwhelming battling the complex web of medical, educational and social services. Accessing the necessary therapies and support, the bureaucratic hurdles can be exhausting. There are times when it feels like a never-ending maze, with each step forward accompanied by setbacks.

Maya’s diagnosis of Dup15 is constantly causing changes in her body. Mix that with puberty and we have been dealing with seizures, mood swings, regression, aggression, and more. Trying to figure out the right cocktail of meds to manage her seizures has been one that has caused a lot of stress. We’ve dealt with weight loss, fighting to take meds, liquid to pill, back to liquid and have  mixed and matched a variety of different meds. The seizures are scary. I can’t imagine what it must look like through our kids eyes watching us help Maya when she has the big, long ones that require rescue meds and a 911 call. Collins, our oldest, has been a big help and has been able to keep her cool and distract her siblings.  

The emotional toll of advocating can be heavy. Watching our niece struggle with everyday activities, face social challenges, and encounter misunderstandings or prejudice is heart-wrenching. The frustration of not always being able to make things better can be deeply discouraging.

Balancing advocacy with other responsibilities is another significant challenge. Juggling work, family life, and self-care while ensuring our niece gets the attention and support she needs often feels like a delicate tightrope walk. We have four other kids to think about as well and need to make sure they are also getting the support they need. It has not been easy and there are days I feel like I don’t have enough bandwidth. Our kids have thankfully been very helpful with Maya, and they do love having her with us. There are times we see some form of resentment. We don’t go trips like we used to. A lot of planning has to go into our day to day. A simple beach day can be challenging. We just continue to push forward and do the best we can.

The financial aspect cannot be ignored. Specialized therapies, adaptive equipment, adaptive activities and medical expenses add up quickly. The financial strain can be a constant source of stress, requiring sacrifices and difficult choices. For Maya, activities are either free, with never enough staff or they are ridiculously expensive with year long waitlists. We have been fortunate enough to get her involved in a lot of local activities that are free but we are always having to pay for some aspect of her care.

Becoming a parent or guardian to a child with special needs is a journey filled with unique challenges and profound rewards. As we step into this role for our beloved niece, we are reminded of the immense strength, love, and resilience that define her and our family. While the path may be unpredictable, we move forward with hope and determination. We are committed to providing her with a nurturing environment where she can thrive and reach her full potential.

To all the families on a similar journey, we stand with you in solidarity and support. Let’s continue to share our stories, uplift each other, and celebrate the incredible children who inspire us every day.