Happy Monday friends!
I’m so excited to be starting a new series of blog posts designed to help you start your journey as a special needs mom from a healthier place than I did. I want to see you and your family thrive! I’ll be going through some of the mistakes I made that cost our family both money and joy and put us “survival mode.” I’ll also be sharing some of the lies I believed and some of the strategies that have helped me go from a sense of just hanging on, to feeling more confidence as a special needs parent.
A Diagnosis is such an emotional event in your life. It’s a paradigm shift. I found myself not only re-thinking my whole past with my son but also having to re-imagine the future. A diagnosis can be not only emotional, but overwhelming. You are given a snapshot of your child’s development and most often than not, there are more than a few areas where your child needs help. You are given loads of information and are probably wading through your own research online. What interventions are helpful? Do I need to do everything? There are so many questions you seek answers to. There are so many voices out there. Which ones do you listen to?
When Preston was diagnosed I was in a desperate place. I was insecure as a mom and struggling with postpartum depression. I had a newborn baby. And, I was grieving. This wasn’t the storyline I wanted for my son, or for our family. I wanted to help my son NOW! I was only thinking of my grief and my desire to do everything I could to help Preston get the best care I could. I wasn’t thinking about the big picture. I wasn’t thinking about my husband or the strength of my marriage, or my other son. I wasn’t taking into consideration my health, my financial or emotional resources. I was only thinking about my pain and my passion to help my son.
I don’t know about you, but making big life decisions from a place of brokenness has never gone well for me. That’s why I’m starting this series. I want to help other mamas like me slow down now so you can speed up later. There are things to think through before jumping in. Decisions you can make from a healthy and whole place so that you an thrive on your journey as a special needs parent. Things like:
• How strong is your marriage or your relationship with your partner? Ideally, they will be your greatest support.
• What is your current financial situation?
• What are the needs of your other children? Spouse?
• Where do your child’s needs most impact your family?
• What can you do while you’re waiting for interventions to start?
• What are your emotional resources?
• How will you prioritize self-care?
• What is your community of support like?
Spending a little time building the groundwork for a healthy family and healthy boundaries will ultimately help you show up for your child in the best ways. The more you are thriving, the more you can give to your child. Even if you’ve been a special needs parent for a long time, I believe the next few posts can help us all take a step back and assess where we’re at, and where we want to be.
If you’ve just been through the process of having your child diagnosed, I want to take a moment to celebrate you. You’re so brave. I wish I could reach through the screen and give you a hug (or a high five if you’re not a hugger like me). It takes courage to admit that something might be off. Or maybe, it was a total surprise for you. But here you are, trying to figure out what to do about it. I admire you. I’m your biggest fan, and you’re already a hero in my book.
The first thing I want you to know is that a diagnosis does not define your child! Autism or ADHD doesn’t define my son Preston. It’s not who he is! It’s only a part of his story. Preston is creative, exuberant, and full of passion and energy. He is an outside-the-box thinker. He’s friendly and loves to share his interests with others. That’s who he IS. And each day I have to chose to focus more on who he is than what he does.
A diagnosis is a label. These labels are helpful in the sense of giving us information about our child’s development compared to other children their age. These labels provide insurance providers with codes so they know what services to pay for (hopefully). But these labels don’t tell the story of our children’s hearts and passions. I’m not downplaying the significance of a diagnosis. I’ve lived through it. Twice. I know the grief it brings. But I want you to know that it is not the whole story. This doesn’t change who they are.
Your child is a beloved child of God. A diagnosis is part of their story but it doesn’t have to define their story. God’s children were never meant to fit in and look like everyone else. From the beginning, God has wanted his children’s lives to look different, to stand out. Being a special needs parent isn’t a typical parenting journey by any means. Perhaps, though, it is a blessing not to have to wrestle with the illusion of normalcy. You are already keenly aware of how your family is special. Your child is special to God, and he has knit him or her together in ways that bring him glory.
The goal of this journey isn’t to make your child fit in and look like everyone else. The goal is love your child well and be an example of God’s grace and glory.
Today, take some time to just observe your child. Write down a list of their strengths and interests. What helps them feel loved and connected? What makes them feel peaceful and calm? Today, focus on their heart. What do you notice? Review this list often. Bring it to IEP meetings so others can see more of who your child is on the inside. Don’t let the label become the only lens through which you see your child.