Finding His Voice

Recently, we’ve been exploring options to help Gage to communicate better. We went through an Augmentative and Alternative Communication (AAC) evaluation with a team at MSU of OT and Speech students. Last Friday, Gage was able to try a variety of devices using everything from his eye gaze to a head switch and reaching with his hand. I left the clinic with an overwhelming amount of information about different systems.

mustache gage
I mustache you a question…

What I didn’t, and knew I wouldn’t, leave with was a “magic bullet” or quick fix to help Gage overcome his challenges communicating his wants and needs. That was never my expectation. But the process was still a good experience and taught me a lot. I’ve been googling things like AAC and reading blog posts from other moms on this topic for a while now. But to have a whole team of students and professors dedicating time and focusing efforts specifically for my kid was extremely valuable. It also forced me to become a little more educated on the topic in the best way that I know how…asking other moms.

In my experience of the world of special needs, I’ve learned that, hands down, the best source of information is a parent who has been there. I’m so lucky to have others to reach out to and can’t thank them enough for the time they spend responding to emails, texts and Facebook messages. Whether it’s a relative I’ve known my whole life, a lake house neighbor I rarely see or a therapist who chose her career path after having her own child with special needs, this network of support is priceless to me. Before I was bold enough to ask for advice, another mom reached out to me, just to let me know it was ok to experience the pain I felt while simultaneously celebrating even the smallest accomplishments.

So, when I felt overwhelmed by all the information about AAC, I sought advice from another mom with more experience and WAY more knowledge than I have. She shared some excellent advice and insights, with an important reminder that communication isn’t just one thing. There are so many different forms and they all matter.

towhead gageGage has his own way of doing things. He will communicate in his own way too. I hope we’ll be able to help him find a way to express himself more effectively, but I fully expect that to take practice and patience. Luckily, the MSU Speech Clinic is willing to offer ongoing support to help us try out things and find a good fit. As we discussed coming on a regular basis for additional training, I told all the students and staff that I’m willing to do that, even if it means adding more appointments to our schedule each week. I’ll commit to dedicating time to work toward communication goals to help hold me accountable. My emotions caught me a little off guard as I told a room full of college kids that my main job is being Gage’s mom and loving him. Of course I’m willing to work with him on things outside of therapy time, but in all honesty, I fall short. I’m so appreciative of professionals who work so hard to help Gage and who help me as well.

I was excited for a plan of more time and support to help Gage find his voice, but I was honestly dreading the thought of even more appointments added to our calendar. Luckily the team at MSU understands the need for practicality and suggested piggybacking on the feeding therapy times we already have…hooray! Saving another trip in the car may not seem like a big deal, but it counts as a victory in my book. And it gets even better. Monday morning as I drove to pick Gage up from school, I was on the phone with a friend complaining about all the trips we make back and forth. It got me thinking how nice it would be to go straight from school to our next appointment, rather than rushing home to eat, only to load up and head out the door again. Then, that afternoon at feeding therapy, the instructor told me their class schedule had changed and we might be able to have therapy time, for both feeding and AAC, in one visit right after leaving school! It was like God answered a prayer I hadn’t even prayed yet!

Who knows what’s in store for Gage in the future when it comes to finding his voice. I’m excited for the potential with AAC and still trying to wrap my head around all the different offerings available. I’m also trying to manage my expectations realistically. But our experience so far has showed me what I’m reminded of over and over again through our journey…God is faithful.

Faithful Friends – Our Special Needs Support System

I pulled up in front of my friend’s house just as the rain started to fall. The boys and I had missed out on the Christmas parade we were trying to get to because I was running late as usual.  Evan was busy that evening, so I was flying solo and totally underestimated the amount of time I needed to dress and load 2 boys into the car. I frantically tried to make my way to the parade, but kept running into cop cars blocking the route. My friends at the parade let me know it was short and sweet and said to just meet at their house instead. As I parked the car, I was mentally preparing a strategy to get both boys inside, keeping them somewhat dry, when my back door flew open. A Christmas boysfriend grabbed Caleb’s car seat and asked what else he could take inside. Shortly after, another pal came out and scooped up Gage in her arms. I breathed a sigh of relief and ran inside behind the rest of the crew. This is just one of the many examples of our friends lending a helping hand.

When I first started connecting with other special needs parents, many of them echoed the same sentiment—that you need to gain a new group of friends because your old friends just won’t “get it.” While I appreciate that special needs parenting comes with different challenges than raising other kids, I thank God every day that this has not been our reality. Don’t get me wrong, advice and insight and just relating to other special needs parents has been invaluable on our journey.  But luckily these new connections have only added to, and not replaced any friendships.

I credit this to the amazing group of friends that we have and what kind and caring people they are. I’ve always felt that one way God shows his love for us is by the people he places in our lives. He keeps proving that to me over and over again, whether it’s through my sisters who’ve known and supported me my whole life, an amazing man who turned into more than just a friend at the perfect time, or faithful friends who lovingly accept our entire family just the way we are. I’d be remiss if I didn’t acknowledge that Gage also deserves a lot of credit for our friends staying close.  He is such a little charmer and irresistible, not just to me, but to so many people who know him!

Add-on advocates

We are lucky enough to have friends (family members are included in this category) who go out of their way to “get it.” They learn about Gage’s diagnosis and help spread the word to others. Their eyes are opened to new concerns that may never have occurred to them before. They become advocates by association simply because they love and care about our little guy.

Don’t miss it

At times, my friends even help me realize things that I might otherwise miss. I’ll share an experience about Gage with them, and their perspective on it reminds me just what an awesome kid he is! Sometimes it’s easy to get caught up in all the dos and don’ts and responsibilities of parenting that we forget to just soak up and enjoy our kids’ unique qualities that make them who they are. I love being reminded of this through a friend’s outside perspective.

Get by with a little help

At other times, friends have helped pull me out of a dark place. Whether it’s through prayer, an encouraging text message or listening to me on a walk and not freaking out when I start to cry, I’ve felt supported and lifted up in so many ways by those around me. As I began to slowly realize Gage’s challenges weren’t something he would outgrow or get over, I slipped into depression. Without the friends sticking by my side I don’t know how I would have made it through. The isolation of Santa Gageraising a special needs child is real, but it doesn’t have to get the final say. We aren’t meant to do this life alone, regardless of our situation. You might be raising kids, caring for an aging parent, or just getting from one day to the next pulled in different directions by the demands of work, school, and the overall busyness of life. Thank God we can connect with each other and ask for help. And if we’re really lucky, we have friends who recognize our need for help before we even ask…and carry our kids inside through the rain.

Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. Likewise, two people lying close together can keep each other warm. But how can one be warm alone? A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” Ecclesiastes 4: 9-12