Hellobee

Our little guy will be phasing out of Early Intervention soon when he turns three-years-old. I’m so appreciative for the amazing therapists and progress he has made. As I was looking back at some of the notes and questions I had from evaluation meetings, insurance phone calls, and neuro-cardiac clinic, I realized my perspective and expectations changed during his Early Intervention therapies and medical evaluations. If I had this perspective and tips when he started therapy, I would have saved myself some frustration and angst.

Raising the Bar: Our little guy works so hard to meet developmental milestones that other kiddos seamlessly move through. When he achieves those big milestones, I want to celebrate! I seriously get excited about him holding (not even cutting), just holding a pair of scissors correctly. The therapists are great, and celebrate with us. But then, they gently remind me that he’s also older, and now the expectations for what he should be able to do as this age have grown. It’s hard. You feel like “whew, he’s caught up!” Then you realize the doctors and therapist have raised the bar of expectations for their development because your kiddo is older. It’s right back to therapy. Someday you expect and hope your kiddo will be hitting all their developmental milestones, but you just don’t know when.

Acting as a Representative: As a mom, I want to share all the exciting fun things my kids are doing. So it’s not fun to sit in a room with therapist and doctors and highlight all of your kiddos delays and medical issues. It’s even worse when they don’t see they delays you are seeing, and you have to convince them your child has a delay. Slowly I’ve changed how I approach meetings, doctor appointments and evaluations. I no longer see myself has just his mom, but as his representative. I gather all the evidence I need (medical history, therapist evaluations, my journal notes on whatever behavior I’m concerned about, and medical journals), then I make a case for the services or medical attention our little guy needs. It’s easier to do these meetings if I treat it more formally and not as his mom.

Getting Comfortable with Self Doubt: As long as my kiddo has areas in his development that are challenging for him, the decisions about therapy, preschools, and childcare will be very difficult to make. Recently, I was talking with another mom who has a school-aged kid with a disability. On the surface, she seems like she has everything together. Then she shared the doubts she still has about if this the best therapy, therapist, school setting, etc….for her kiddo. I felt better knowing I wasn’t the only one making myself crazy trying to figure this out. Really, until my little guy is on track with his developmental milestones, I will have doubts about our previous decisions or agonize over future decisions to help him. I’ve learned to embrace the discomfort of self-doubt the way I embrace sore legs and tired knees the day after a long run. It’s uncomfortable because we are working hard to improve our son’s health and development, the same way my legs are sore because I’m working to improve my health.

Like Turning an Ocean Liner: As a parent I expected to have some tough developmental stages or behaviors: breastfeeding, sleep training, potty training. But when your kiddo is facing some developmental delays, there are just so many behaviors and skills to teach. Each behavior and skill requires so much effort, and you are pushing up against significant resistance. That resistance could literally be your child pushing your hand away when you try to give him a crayon, or it could be running in the other room to avoid saying sounds. The adage that “parenting is a marathon, not a sprint” makes sense to me. It’s necessary with therapy to plot small goals, be patient, but be persistent. Changing behavior is like turning an ocean liner; it can be slow and take effort, but it’s usually smooth sailing once they master the new skill.

Medical Procedure Documentation: A medical diagnosis alone may not automatically qualify your child for services. However, the type of medical procedures your child has undergone can automatically qualify them for services. In our case, our son was on the heart-lung bypass machine for his surgery and this qualified him for services, not his diagnosis and surgery. This took me a year to figure out and could have saved me frustrating attempts at getting insurance or EI to approve therapy. We had to push for a clinical judgment the first time he needed to be approved for services.

Keep ALL the Paperwork: This is a more practical tip, but especially critical if your child has a medical diagnosis. Therapists are busy so if someone forgets to send over an evaluation for authorization of services or later the school district needs a copy, you’ll have one.

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I’m not sure what the next step is for our little guy yet; we are in the process of making those decisions now. However, I do have a better understanding of how what to expect with therapy, and how to navigate services as we roll into the next phase. But we are going to miss his awesome EI therapists.