Breakthrough

Five and a half years. That is how long I’ve waited for this moment. That is how long I’ve prayed and pleaded to feel this kind of joy. That is how long I’ve hoped, dreamed and fantasized what it would feel like to communicate with my non-verbal son. 

I’ve done a lot of grieving over the five and a half years. In that time I’ve worked hard to accept a lot of truths no parent ever wants to accept and let go of a lot of dreams most parents get to experience. I’ve had to come to peace with a lot of diagnoses and many missed milestones. I have convinced myself in my head that it is a very real possibility my child may never communicate. Why? It has always been his greatest challenge. Every itty bitty step forward was followed by several ginormous steps back. When progress was made it was quickly lost. I have worked with many developmental and speech therapists over the past few years and all of them struggled to see the potential I saw in my child. I have done years of research on genetic syndromes with similar symptomology that Jayson has had. Many of them were forever non-verbal and struggled with communication. It hurt and I mourned so deeply the fact I may never hear my son say, “I love you Mommy,” or be able to tell me where he hurts and what great things went on during his day at school. To cope with the pain, I have forced myself to accept what is. My child doesn’t communicate. He may never. I often think, "Let’s work with what we have right now, keep hoping for more, but celebrate where we are." Even though I was trying to be realistic, I never gave up. We have invested innumerable amounts of time and money in therapists, programs, modalities, strategies, and methods hoping that one day we would have a breakthrough. Well, it happened. The breakthrough happened. And it wasn’t a small trickle of progress. The communication dam broke and the progress flooded my living room, just like my happy tears.

Jayson started ABA therapy 6 months ago. We have loved it even though there were some very big problems. It took months to convince the program directors some big changes needed to be made in order to allow our son to make some progress. Their data showed the progress was minuscule but we as Jayson’s parents saw the small steps forward even with the challenging situation and knew with the right person and the right setting, Jayson would soar. In attempt to find a way to meet our demands, we had to go without a therapist for a month and a half. It was heartbreaking to watch Jayson go to his therapy chair asking to learn and we had no one to teach him. Finally, we received a new therapist last week. She’s new and very teachable. She bonded with Jayson quickly and I saw a ridiculous amount of progress in one 2 hour session. I got butterflies in my stomach thinking about what might happen after weeks and months of 2 hour sessions five days a week. It felt so right. 

Jayson’s goals were rewritten to focus on following directions and communication. The program supervisor got us an ipad from UCAT with a communication app/program on it called Proloquo2go. I’ve done research on this program and we have tried something similar in the past without any luck. I was hoping with how well Jayson has been progressing lately that maybe he could make some progress with this app, but I knew it would be slow. We started with just two pictures, a phone and a bus. The phone represented the therapist’s phone with some of Jayson’s favorite vocabulary flash card apps. The bus represented the “toy of the day” that he has had for several days now. It is nicknamed the “Letter Bus” because it’s a magnetic bus that allows you to put letters inside as it sings the letter name and sound. Jayson immediately understood how the app worked even though we used symbols rather than real pictures to represent his two favorite things. I was surprised and excited. The next goal was to work our way up to four objects for him to choose from. I thought it sounded reasonable and I was excited to see how Jayson might make some progress. 

Well, I worked the next few days away from home. I met the new therapist on a Wednesday, I had to work Thursday and Friday and the following Monday. Jayson’s nurse and his dad saw the past few therapy sessions. They seemed pretty optimistic about what was happening. The best part was how excited Jayson has been about all of it. He would get smiley and excited when the therapist would arrive and go right to his therapy chair and try and pull the tray on. It is clear he loves therapy. 

Today, Monday, when I got home from work I asked Jayson’s nurse how he did in therapy. She told me really well. She grabbed the new ipad with Proloquo2go and showed me there were several new icons added. WHAT?!! I was frustrated. I saw so much potential with this program and the therapists were going to ruin it by setting the bar too high and overwhelming Jayson!! We started with two icons and were going to work up to 4 after several weeks. And now there were NINE!!! And some were abstract?! What were they thinking?! And the nurse continued to explain that they wanted Jayson to be making complete sentences by combining different icons. And I needed to use this and reinforce this at home. NO WAY… I just put the ipad down and rolled my eyes. This was not going to work if they were going to try and push Jayson to progress faster than he is able. I know my son. We have done this before. He struggles so much with communication. I saw so much potential in him using this to communicate and I really didn’t want them to ruin this for him. 

We said goodbye to our nurse and Jayson went to his therapy chair, looked at me and signed Please. He wanted to work. I was holding the baby and trying to get her to sleep. I told him, “No Jayson, it’s not time for therapy right now. You already had therapy and they will come back tomorrow.” He got up and started to open his chest full of therapy toys. Little stinker. I got up and told him he knows he can only play with those toys during therapy. I could see that he was going for his Letter Bus toy. It is clearly still the “toy of the day”. I sat and thought for a minute, and decided to put it all to the test. I was going to see if this whole ipad communication thing is really working as well as they are claiming it is. 

I grabbed the ipad and walked over the Jayson and said, “What do you want Jay?” Without hesitation Jayson touched, “More…. Letter Bus.” WHAT?!?! He made a sentence. He touched two icons. He told me exactly what I knew he wanted. My jaw dropped and tears filled my eyes. “What did you say, Jay? What do you want?” He touched, “More… Letter Bus.” Holy. Freaking. Crap. I started bawling. No, sobbing. No, ugly crying. My son just told me exactly what he wanted using a full sentence for the very first time. 

Clearly, I gave him the Letter Bus. If I had a million Letter Buses, he’d have them all. I just sat there in disbelief wondering if I truly witnessed what I just thought I did. Still slightly skeptical, I took away his Letter Bus and asked him what he wanted. He touched, “A letter please.” He wanted a letter for the Letter Bus I had just collected. I gave him one. He touched it again. I gave him another. He played with both of them for a minute then realized that he wanted the bus. “More… Letter Bus.” I handed it over to him while shaking my head in disbelief. I had another good cry and said a prayer of gratitude while Jayson played with the toy he worked so hard for. After 5-10 minutes, I recognized I had allowed him to play with it for too long. It’s his therapy toy. He always has to work for it, and if he plays with it for too long it will lose its novelty. And it’s harder for him to give it up. He threw a fit. He was so mad I took away his beloved toy!! He went to his therapy chair in attempt to show he wanted it. I brought the ipad to him, but he was still mad. He was fussing and grumbling and refusing to make eye contact. I told him, “You can have it again Jayson. Just touch “More…. Letter Bus.” He angrily tapped, “NO.” I stood completely flabbergasted. Did my son just say no???? Did he just tell me no???? I said, “Touch More… Letter Bus.” He tapped again, “NO.” and pushed me away. OH MY GOSH!!!!!!!!!!!!!!!!! MY SON JUST TOLD ME NO!!!!!!!!!!!!!! I said, “Jayson, Mommy says it’s okay, don’t be mad, you can have your toy. You just need to use your ipad to tell Mommy More… Letter Bus.” He looked my direction with a scowl and tapped, “NO! NO! NO!” I started laughing and crying at the same time! My son and I were getting into our very first fight. I had no idea it would feel so good!!!!! He then tapped, “I need a break.” His nurse told me that when he did that earlier during therapy it meant everyone had to leave him alone for a period of time. I truly did not believe that he would tell me that at such an appropriate time. The “I need a break” icon was just above the “A letter please” icon. So I said, “Jayson, I think you meant A letter please.” And he got up and went and sat on his beanbag, his safe place where he likes to be alone. He truly meant it. He needed a break because he was mad at his mommy for making him work!!! 

I needed a break too. I needed alone time too. I was so overcome with emotion I could not even handle it. I have not cried this hard in a very long time, and this time it was nothing but tears of joy and gratitude. My son was communicating. He was telling me his wants and his needs and his emotions. And this was after only FOUR DAYS of using this program and working with his new therapist. FOUR DAYS. I called his therapy supervisor to share tears of joy with her. She informed me that he had mastered the six month goals she had written for him in this area in just FOUR DAYS. 

I can’t wait to see what he might accomplish in just another FOUR… 

Jayson repeated this miracle for his daddy when he got home from work. He said yes and no to different foods at dinner time. And he showed off his skills one more time while Mommy captured a video, which ended in him telling me he was tired. More like, very very tired. 

I am on cloud nine. I feel like I’m living a dream I never want to wake up from. My son is killing it. He is crushing every obstacle. He is dominating and not letting anything stand in his way! There is literally no stopping him and no telling what he will do next. There are no limits! 

Every parent loves celebrating those amazing firsts such as a child’s first word. Those milestones feel incredible! They have been milestones I have missed out on. But I can say today with certainty that I haven’t missed out on anything. There is absolutely no way that anything can compare with the joy I feel today. Jayson’s journey has changed me. My perspective and entire world is different. By knowing heartbreak, it has allowed me to find divine happiness through very small and simple things many take for granted. Today I feel like the gates of heaven have opened and given me a glimpse of what joy lies in store for us when we are reunited with the angels of heaven. How do I know what that heavenly joy feels like? Because one of God’s most precious angels lives in my home and teaches me incredible lessons every day. Today he taught me never to doubt and there is no need to mourn what might never be. Because with Jayson, anything is possible… in God’s time.