A Parent's Perspective - Adventures in Mattyland

Today, please help me welcome Brandi, of Adventures in Mattyland. Brandi is mom to adorable, 2 year old Matthew, who has epilepsy, cerebral palsy (CP), cortical visual impairment (CVI), bilateral hearing impairment, microcephaly, and undiagnosed chromosomal abnormalities. One of Brandi's goals for 2013 is to create a blog that is an asset to other families. Brandi is well on her way to achieving that and today she is stopping by to share some of her insights gained from being a special needs mommy. Read on to learn more. 

Our life in five words:

Busy, Challenging, Blessed, Loving, Committed

Four qualities I look for in a therapist:

1. The ability to establish a good relationship with my child. A good therapist should be able to set up a relationship with a child to let them know what is expected of  them, but also make them want to come to therapy. Establish guidelines with the parents how meltdowns will be handled and communicate how therapies can also be carried out at home so there is continuity. 
2. Creativity. Be willing to step outside the norm to find what best fits the patient. After much trial and error, Matthew's therapists and I set up a plan to have him do his sessions in a darkened room with a standing bubble lamp to calm him. We have also done a lot of different therapy activities on swings and exercise balls because they help him focus better.
3. Show Discretion. If you have something negative to say about the kid, please don't say it in front of your clients. Nothing will kill a working relationship with a parent quicker than unprofessional comments about their child, even more so if you make them in front of other parents.
4. Willingness to Try New Things. We have tried a few different ACC apps on Matthew's iPad and none were a good fit for him. I found one on my own that I found that I could customize with a dark background which helped Matthew see the speech tiles better. Thankfully we have a great Speech Therapist and Occupational Therapist who co-treat and who listen to our concerns and are willing to take a chance on trying something new and different to capture Matthew's attention.

Three resources I can’t live without:

• Blogs and Support Groups. Joining the blogging community has been a lifesaver for me, both as a writer and a mother of a child with special needs. In the beginning of our journey, I had never felt so alone and isolated because we knew no one else in our situation. I was lucky to find a whole community of parents both on Facebook and through blogging who "get it." Some of my favorite blogs are Love That Max, Along Came the Bird, Bird on the Street, Team Aidan, Modified Mamas, and Mommies of Miracles.
• The iPad. The iPad was a huge game changer for Matthew in terms of therapies and communication. He has shown very little interest in conventional toys, unless it's a Hotwheel car or Mater from the Cars movies, but he gets very excited when he sees his iPad. We began using it in therapy in December 2011 and it was like a light switch flipped for him. We have a great list of apps we use with him and change frequently to help with communication, OT skills, and vision strengthening apps. It has also been a lifesaver during long appointment waits and during meltdowns because then I can play his Beatles playlist or play one of his Disney videos.
• Cozi Calendar app for iPad. This app is fantastic! My husband also has this app on his work iPad and it has saved us from a lot of scheduling problems. You can sync the calendar between multiple devices and the computer so that all of your appointments are easily accessible for everyone in the family and you can even color-code appointments for each individual family member. Cannot tell you how much we love this app! 

Two words (or more!) of advice for therapists working with children with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

• Be flexible. What might work for a kid one week might not work the next week. Be willing to try new activities or adapting existing ones.
• Involve parents as much as possible and try to give them as input as possible. No one knows best what works for a kid than their parents and ultimately they are the ones who have to put therapies into action at home. 

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

When your child is diagnosed, it is perfectly normal to be in denial and to mourn your idea of "normal." Your life is about to change in ways that you won't be able to comprehend. The most important thing is to build your family a village of friends, family, trusted therapists and specialists. One of the best decisions I've made since Matthew started collecting diagnoses was to open myself up and start seeking out other families who are going through similar circumstances that we are. If you're reading this and don't have people to talk to, email me and I will help you get started. 

One dream for my child:

My biggest dream is that Matthew be able to communicate with us. One of the worst feelings as a parent is seeing your child's frustration when they cannot communicate with you.

What I do to rest and recharge:

One night a week, my husband takes Matthew over to his parents’ house to hang out and gives me a night off. I use that time to read, blog, watch movies, shower and sometimes sleep. I get time off and my in-laws' get time with Matthew so it is a win-win.

Thanks so much for stopping by, Brandi! Readers, be sure to follow Matthew's adventures at www.adventuresinmattyland.blogspot.com. You can also follow along on Facebook, Twitter, and Pinterest.