Our life in five words:Complex heaping mess of wonderful. (and because I loved the six word memoir project, I'll throw in this one: Walked through heartache gracefully. Loved fiercely.)
Four qualities I look for in a therapist:
- Ability to respectfully work as team.
- Willingness to try new things.
- Hold high expectations for my child.
- Have strong communication skills with me and my child and the myriad of other professionals involved.
Three resources I can’t live without:
- Blogs. Every person has a story and I have been educated, encouraged, and challenged when I read blogs about other people living with disabilities. Here are some of my favorites: Outrageous Fortune, Uncommon Sense, Fighting Monsters with Rubber Swords, Happy Being Trevy, Bringing the Sunshine
- My Durable Medical Equipment (DME) guy. Yeah, I don't have a pool guy or a lawn guy but I have a great DME guy. Our DME guy meets us at school, home, or the clinic and has advised us on a variety of accessibility issues. The best part is that we get to try equipment before we buy it. Sounds like a no brainer but it's not standard in DME world. He and his administrative assistant are very accessible to me.
- My medical dictionary for a few reasons. I'm a bit of a nerd so it's actually fun to have. As opposed to a google search, I can be sure that it's a reliable source. I always ask for a copy of the medical notes from each appointment. Yes, I have super huge binders complete with tabs to differentiate between specialist. The binder also has one of those fabulous plastic business card holders so I have all contact info at hand. Sometimes doctors use language in speaking to me that is different from what they write in their notes. It's helpful to have this dictionary on hand to make sure we really did discuss what the doctor recorded.
Two words (or more!) of advice for therapists working with children with a developmental disability:
Help me meet realistic, functional goals and cut me some slack. I've always said that the biggest gift I was given in Aidan's early days was a Speech Therapist who was also the mom of a child with a disability. She would say, 'It would be best if you could do XYZ but it's more realistic to think you'll do ABC, and that's great." I'm also much more apt to carry over therapy at home when I understand why we're working on a particular skill. Let's make it functional. For example, Aidan doesn't have any cats in his life at all. Let's work on words like "milk" or "help" before "cat." I'm taking in information from many professionals and I get to make the final decision about how to implement these goals. Aidan had an eye doctor once who wanted him to wear blow up arm bands to stop him from taking off his eyeglasses. His OT loved the idea of him isolating his finger and reaching for his glasses. I had to make a decision that was best for Aidan and would work for us as a family which means one of those professionals didn't get their goals met. Just know that I'm willing to work hard for my son's progress, but therapy is one small piece of our world and I'm constantly working to bring balance into our life.
Be willing to think outside the box/be surprised. Clinically speaking, Aidan was a prime candidate for a manual wheelchair as he has a significant cognitive disability and motor planning impairments. Both my PT and I believed he would primarily be pushed in a chair while occasionally attempting to move it himself. For kicks and grins we let him try a power chair with no expectations of success. He surprised us all. It has been a life changer. Aidan is an incredible driver and now has independent mobility because of his power chair. Here's the best part: in my head I believed a powerchair would decrease his already limited walking skills. It has done the exact opposite. Aidan is so motivated to move that he has gotten stronger in his walking skills and more precise in his driving skills.
A word of advice for the parents of a child newly diagnosed with a developmental disability:Find other parents. Someone who has been there and understands both the emotional aspect of raising a child with a disability and is able to direct you to your local resources. Ask them out for coffee. If you need to pour out your heart without worrying about interpreting the lingo, do it and they will listen. Then ask every question you have and listen as they put in their two cents. This is my favorite part of being a "been there, done that, bought the t-shirt mom" living in Disability World. I love connecting with other moms. In specific regards to the diagnosis of Epilepsy - get educated and surround yourself with support so you don't get overwhelmed. Epilepsy is complex. There are so many different kinds of seizures and treatments. As a parent, I feel more confident having done my research so I can really partner with Aidan's physicians to treat him.
One dream for my child:This is a hard question because I can't answer it without thinking about broken dreams. It's always been important to me that he has real friends, peers who naturally want to be around him. Not ones that have to be written into an IEP plan. This dream is not very realistic for Aidan. That being said, I believe he will always have people in his life who love him.
What I do to rest and recharge:Read and write. Words are my soul food. My favorite place to be in snuggled up in bed with hot chocolate and a good book... or on the beach. I don't do it enough but a brisk walk at the ocean is always healing.
Heather, thank you SO much for taking the time to share your perspective! Readers, want to read more? Check out her blog at www.teamaidan.wordpress.com. Not sure where to start? I recommend you start here. Also, you can follow Team Aidan on Facebook and Twitter.