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Inchstones to Milestones

Paperwork, Paperwork, Paperwork

November 11, 20243 min read

I've experienced the challenges of managing paperwork and phone calls as a special needs parent. In this blog post, I want to share some of the strategies I've learned to navigate these overwhelming tasks.

When my son was dealing with a catastrophic form of epilepsy called infantile spasms, the amount of medical paperwork, phone calls, and 24/7 supervision required was truly daunting. He needed to wear a helmet and would have clusters of seizures where he would fall to the ground. On top of that, he had behavioral struggles, including biting, hitting, and frequent dysregulation. The sheer volume of medical care and documentation was enough to make anyone feel overwhelmed.

Thankfully, through the incredible care of the team at the Children's Hospital of Philadelphia, my son underwent a procedure where part of his frontal and parietal lobes were removed. This has resulted in him being seizure-free for the past five years, which is an absolute blessing! However, as we've entered a new season, I find myself facing a different set of paperwork challenges. I have one other child has an autism diagnosis as well, and we're navigating the process of getting additional services and support.

It's a delicate balance of providing the necessary structure and support while also respecting their need for privacy and independence. One of the key things I've learned is the importance of not letting the paperwork and phone calls consume me. When I find pockets of time, I make a conscious effort to tackle those tasks, whether it's during a quiet moment when my kids are occupied or when I have a few less children in the car.

I've also found that allowing my child with autism to have some screen time can be a valuable tool, as it gives me the opportunity to focus on those administrative tasks. Another strategy I've employed is to be intentional about breaking up my weeks. I'll dedicate focused time to tasks like my college work, and then I'll make sure to take breaks and engage in activities that I genuinely enjoy, like working on my business.

It's so important to find that balance and not fall into the trap of constantly powering through. As special needs parents, we often feel the weight of our children's needs, and it can be tempting to neglect our own self-care. However, I've learned that taking time for myself, whether it's going out for coffee, getting some new clothes, or simply having a quiet moment to myself, is crucial for my mental and physical health.

Reducing stress levels can help prevent issues like autoimmune disorders, which are common in women with high-stress lifestyles! If you're feeling overwhelmed by the paperwork and phone calls that come with being a special needs parent, know that you're not alone. I encourage you to find ways to incorporate breaks and downtime into your routine, even if it means asking for help from a trusted friend or family member.

** Remember, there is no emergency right now, and it's important to pace yourself and prioritize your well-being. Together, let's continue to learn and grow, inch by inch, as we navigate the unique challenges and joys of parenting children with special needs. I'm here to support you every step of the way!

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