The Wait is Worth It!

By Kirsten Kline

I quickly realized that in the realm of raising a special needs child there is a game that must be played and it’s The Waiting Game. There are endless versions of this game, each with its own “exciting” challenges. A few versions that I have recently beta tested include:

• waiting for the doctor’s scheduling team to call you back;
• waiting on hold with the insurance company;
• waiting for approval from the insurance company;
• waiting for the appointment;
• waiting for the “doctor will see you now”;
• waiting for the test results;
• waiting for the meltdowns to subside;
• waiting for your child to hit that next milestone that we so desperately want them to reach;
• waiting for the bedtime reprieve after a long day of meltdowns and mishaps

The list is endless. Each day you get to partake in a waiting game whether you want to play or not.

They say that patience is a virtue and it’s one that I, admittedly, struggle with especially when it comes to getting my three year old son, KV, the services he needs and deserves.

One of the more recent waiting games that I begrudgingly partook in was with KV’s therapist and insurance.

Over the summer, my wife, Annie, and I attended the OCNDS Conference in Denver. While we were there we had the opportunity to sit down, one-on-one, with Dr. Okur and ask him all of our burning questions. One of our concerns was how could we help our non-verbal son find his “voice”. He told us to give him every outlet and option imaginable to communicate with us, this included the use of an Augmentative and Alternative Communication (AAC) Device.

My wife and I were a little surprised by the AAC device suggestion. His speech therapist had been telling us to just wait, he wasn’t ready for the device. He hadn’t mastered the gentle touch of the iPad and would struggle with the AAC device. I mean, I didn’t think his therapist was wrong. I had sat in on his sessions. I had watched my son bang away at the iPad unable to navigate it, especially with the same ease and precision his peers seem to so effortlessly possess. So sure, I thought, maybe we should wait. However, armed with this new knowledge I received from Dr. Okur, I decided that this waiting game was over.

The day after we returned from the Denver trip, KV had a therapy session, I marched in overflowing with new information that I had gleaned from the conference. I offloaded all of the information onto his therapist and requested we help KV acquire an AAC device. Turns out the waiting game I was playing was not over. Again, she said she thought he wasn’t ready. I took that as a “no” but over the following weeks continued to push for the AAC device. His therapist finally gave us some options to try to acquire the device, but all of the options came with just a “little” caveat. Because of insurance red tape we would have to wait six to eight months to receive the device.

Beaten down and disheartened from playing this particular waiting game, I thought my energy levels were fully depleted and that this waiting game might be one that I never beat. Like all parents, there is some type of internal ether of life that we all eventually have to pull from to level up, replenish and to continue on our journey. Knowing that my son’s “voice” depended on my wife and I, I drew from this sacred ether within and found my second wind. “No!” I decided that six to eight months wasn’t a good enough answer. So I took matters into my own hands.

One thing I have learned over the years while navigating this life with our son, is that the more you seem to talk about and put things out into the universe, that more often than not the right people seem to find you. After exhausting all of my options and spending countless hours on the phone with insurance, I finally, in passing, casually mentioned to my son’s BCBA therapist that we were struggling mightily to acquire an AAC device for KV. It turns out she had a solution and mentioned a company I had not heard of before. Upon arriving home that afternoon I contacted the company expecting to be shot down again. I was pleasantly surprised when we were approved the very same day. They said it would be shipped to our home within the next 5 business days. I waited anxiously for days, anticipating the usual Boss Character to pop out at the very last minute. You know the type, the fire-breathing Bowser, there to engage you in some epic battle, their one and only goal - to stop you from achieving your quest. The days slowly passed, to my shock and surprise the main Boss Character never arrived. No fire-breathing lizard came knocking on my door, instead *Ding* a notification - the AAC device has been delivered. This waiting game was over. I had beaten this quest.

My son is now in his 90 day trial period with the device. It took him a few weeks to get acclimated but he finally got the hang of it. He is able to navigate the device and seemingly with ease. It turns out he had a lot to say and he knows what he wants and needs. My wife and I were shocked to learn that one of his favorite treats is bananas dipped in ketchup. He is constantly requesting this combo and downs this tasty treat with a big smile on his face. Our son is working so hard to learn all of the exciting things the AAC device has to offer him. He is now able to communicate simple requests and even tell us when he needs to go potty. The AAC device has given our son his “voice” and it is the most beautiful sound we have ever heard.

As one waiting game comes to a close, I know another game will start very soon. My rest period will be over before I know it. I now realize that I will forever be a player in The Waiting Game. There are no winners or losers, just endless levels, some more challenging than others. Some with big victories and some that make you question if you even know how to play this game at all. At the end of the day I can say with 100% certainty that the wait is worth it! To see your child grow, develop and flourish from the services you have fought so hard to acquire for them is a victory like no other. So you know what, I take it back, there is a winner and that winner is our children!