Covid definitely had a big impact on the whole family. Greyson in particular was affected in many ways. To start he was finally starting to attempt to socialize but suddenly we couldn’t let him socialize. I am sure it was a confusing time for him. One minute being encouraged to socialize and the next not being allowed to.
Another challenge that affected Greyson was therapy. We spent a lot of time debating what we should do with ABA. We knew it would really affect all the progress he was making, but at the same time we were all healthy and could not imagine how hard it would be if we got sick. So we made the decision to pause therapy for the time being.
We immediately set up a plan. We did a call with Kim our BCBA and decided we would commit to doing 2 hours a day 5 days a week of ABA. Kim walked us through what we needed to focus on based on where Greyson was at. We worked through learning how to implement trials and how to teach. We started reading books and watching videos to make sure we were ready to be as successful as possible. Once we did start doing ABA with Grey we also scheduled weekly calls with Kim to discuss progress and slowly moving from skill to skill.
It was a real learning curve for us. We were basically getting a crash course on being an RBT, but we all made progress together. We grew as parents and Greyson learned new skills. This time was challenging for all of us but it really brought us together as a family and taught us a lot. We knew more than we could have ever imagined. After a few weeks Greyson really started engaging in therapy with us and making great progress. Since we were with him all day we were able to generalize a lot of what we were working on throughout the day.
By the time we were transitioning back into in person therapy our RBT was amazed at how much he had learned. To this day our BCBA Kim raves about how hard we worked with him and how well we did. How it was extremely impactful and prevented any major regressions. It truly turned out to be a blessing in disguise.
I have learned a lot since becoming a father. I know I have talked a little about the struggling time I had when Grey was born. But I haven’t spoken about the parts of that time in my life that I was challenged as a person. I looked back on my life and realized I was not really sure I knew myself. I didn’t know who Shawn was. I started exploring my past and what story I had told myself about who I was. I was struggling because I was not connected to my own soul. It added to all the stress, anxiety and confusion. I was in an identity crisis. Why did I have this vision of myself, and where did it come from. Hundreds of questions were going through my mind.
Through the struggles I had a lot of support from Alex. Support that I felt wasn’t even deserved at times. My emotions were pouring over into my marriage at that time too. We had some really great conversations and she was always supportive. She encouraged me to speak to someone. So I did and it felt good to start addressing these emotions. I explored the emotions and after a few sessions and evaluations I was diagnosed with Bipolar Disorder. I was in denial for a couple weeks but I eventually excepted it. I was put on medication and did counseling and now looking back on everything with a clear mind, the whole thing was a blessing.
I was able to connect with myself in a new way. I knew who I was and who I wasn’t. What my goals were and my vision for my future. If I didn’t go through this time in my life I would still be struggling. I would still be lost and disconnected with myself. To be honest it is scary to think where I could be today if I was never blessed by the diagnosis and if I never had Alex to support me I could be in a really horrible place right now. Thanks to her I am thriving!
Greyson is a very unique and special boy. He has his own unique personality, his own pet peeves, and interests. Although he has missed many milestones over the years, he has eventually hit most of them. It shows how smart and hard working he is. His style of learning is different then most but it works extremely well for him. I believe he has a photographic memory, because he can see something once and he already has it memorized.
He shocks me every day. I wake up wondering how he will surprise me that day. How does he know every animal. He knows what a cardinal is but has never seen one. It is truly shocking sometimes. It is difficult to know what he understands and how much he has learned. Alex and I think he knows much more than it seems and since he is non verbal he can take advantage of acting like he doesn’t know what is going on.
Seeing the progress every day and being constantly surprised be him, provides me with motivation to keep moving forward. It is a great feeling waking up and being so excited about what that day has to offer. Every day I wake up wondering if this will be the day, the day he finally starts to talk and finds his voice. I pray every day!
I was struggling for a while after Greyson was born. By far the most challenging time in my life. After 6-8 months I think I was finally getting accustom to the role of being a father. I was dealing with the negative thoughts and stresses that were affecting me. It took a lot of time and work but I was getting where I needed to be in order to be a great father.
I was almost completely past this time when I got the gut punch. Finding our Greyson had autism at about 18-19 months. Outwardly, I was calm and supportive. I needed to be a rock for Alex. I was trying to focus on staying positive. I knew that as long as we were a team and a family we could get through anything. But internally it was a completely different story. I definitely took a few steps backwards.
Once again, I felt scared and overwhelmed. Grieving what we envisioned for our future and wondering how I was going to help my beautiful son. I got lost in my own mind. Playing out a million scenarios. I was thinking about the fact that I may never hear my son say “Dad.” I might not ever be able to see him get married or have a family. I may not see him even have a career. We might not even be able to do any normal father and son activities, like have a catch or going fishing.
I was truly mourning what I thought could be, while trying to manage the reality we were in. I was lost in my own head and struggling. I knew this was not the whole story but I did not see the way forward.
I know I have spoken a lot about Greyson’s challenges and what we have been through as a family. We talked a lot about finding our mission and purpose in life. What I haven’t spoken about is my personal challenges during this period and what I have gone through as a man and father. I will start with when Greyson was first born.
This post will be its own challenge for me. I struggle mightily, with opening up and being vulnerable with Alex, let alone the world. But I am trying to get comfortable with being uncomfortable. I made a pledge when I started this blog. I would be completely open and honest to share our story from my perspective and hold nothing back in order to empower our followers. My hope was to help others manage the challenges that come along with their unique journey.
To start, Alex’s pregnancy was great. She never felt better and I was super excited to become a father. It was always a major goal I had in my life. The joy and excitement was incredible for us as well as our family and friends. I had never experienced such an incredible amount of happiness, peace and joy.
The day Grey was born was a rollercoaster ride of every emotion. I was excited, then nervous, then scared, then excited again. Then when he was born the emotions overwhelmed me and I cried tears of pure joy as I looked at him for the first time.
What happened next was interesting to both me and Alex. I was suddenly struck with an incredible amount of anxiety, fear, worry and stress. It quickly turned into a depression. Later, I realized it all seemed from my fear of being a bad father, stressing about financially supporting our growing family and maintaining an incredible relationship with Alex. I was now responsible for another human being. This was the most challenging time in my life. Every day was a struggle and would I ever be able to handle it.
Greyson has really changed our lives in so many ways. I could not possibly have imagined that we would be where we are right now 5 years ago. Everyone always says that having a child is never what you expect, no matter how much you prepare you will never be completely ready. I believed that but I could never have imagined what would transpire in our lives.
In the very beginning it was surprising how challenging it was to be a parent. Just like everyone said, I prepare myself but I still wasn’t prepared. Although, we quickly adjusted into our new lives and roles. We enjoyed being parents and growing our family. But as we uncovered Greyson’s autism the roller coaster ride of emotions got more and more volatile. Mourning what you thought your future would be and what you had planned for life was hard to handle. It took a lot of time and work for me to accept and get past all of that.
I feel this all happened for a reason. It was really a gift. God gave us Greyson because he was meant to be ours and we were meant to be his. I would have never been a good parent if none of this happened. I have grown so much from the roller coaster and I am a much better person and father because of all of it. I have always felt out of place, like I didn’t belong and was different. Now I am a part of something incredibly special. A family that I am meant to be a part of. I never knew where I was meant to be but I finally found the place I belong, my home! This incredible family!
When Greyson was in early intervention and about 2 years old, we were working with an awesome OT and DI. We had a wonderful experience with them and Greyson did as well. They really helped us learn a lot. However, the experience with our program director was horrible.
She was never meant to work in a customer facing role. She had no sense of empathy or sympathy for Greyson or us. She really didn’t seem to care about Greyson, his challenges or ours for that matter. After a while we realized she had no idea what she was talking about. It seems unimaginable that someone could have such an important role without having the knowledge to back it up.
The fight with her really started a couple months later. Greyson was a little over two years old and still non verbal. Alex spoke to the OT and DI and they really encouraged her to speak to the program director about speech therapy. They thought it was a great time to start it and he could really benefit from it. So Alex brought it up to her and she shot her down immediately. She said he is too young and did not need that type of therapy right now. She did suggest that we try to work on PECS with him.
Of course everything she told us about PECS was completely wrong. Of course we did not realize it until about a year later. This proved to me that she did not care about helping anyone. It was just a job for her. This was when I realized how important it is to be your Childs best advocate. If you need to switch to a different provider do not hesitate. I wish we did. I was so angry that we trusted people who were supposed to be doing what was best for our child. A so called expert. But I realize now how important it is to work with great providers who truly care. I wish we would have spent a little more time asking them questions before moving forward. If we did we might have asked for a different program manager and maybe all of us would have been better off.
Never trust anyone’s intentions until you really dig in and ask them a lot of questions, and go with your gut. It is usually right!
Our journey has taken us to an amazing place! Somewhere that seemed unimaginable just 5 years ago. I had so many ideas of where I wanted to go and what I wanted to accomplish 5 years ago. I was just unsure exactly what I should do to get to the place I knew I wanted to go and was meant to go.
That all changes when Greyson was about 3.5 years old. Greyson’s autism and our journey really gave me a whole new perspective. I realized I could, and would make autism my life work. I wanted to make a difference in peoples lives and knew this would be the way to do it. This revelation gave me so much purpose. The purpose I previously lacked and was holding me back. This was a purpose that was greater than me. Helping others in the world of autism.
This is when we started Building The Puzzle, our brand. We launched this blog, started a vlog, started a support group and of course our podcast. All to help other families of children with autism. I wrote a children’s book about autism, “Every Frog is Special.” We started, The Speech Paradigm, which provides in home Speech Therapy, as well as a sensory toy company called, Greyson & Company.
Alex and I had finally found our mission and purpose in life! I never felt the type of drive or serenity that I had during that time. I was at peace knowing we were doing God’s work, what we were meant to do. Not just here to support Greyson, but to help any and all people that are affected by Autism.
In early 2020 things were progressing very well in ABA. We were working with 3 therapists and doing 15 hours of therapy a week. Then we were hit by the pandemic. Obviously, the whole world has been massively affected by the unprecedented time, but we were suddenly on our own again. Like we were going back to the beginning. But was it really going back to the beginning? By now we learned so much and we have all come so far.
Our providers stopped coming to the home, and we started to do therapy with Greyson every day ourselves. It was time to test our knowledge and challenge ourselves as parents. We scheduled weekly video calls with our BCBA in order to review his progress and set new goals. It was such a challenging time for all of us. We had to take on new roles and Greyson’s progress depended on both of us.
We took the challenge head on. We were a great team. Alexandria and I have very different strengths and weaknesses, that compliment each other well. This is what allowed us to help turn this challenging time into a success. When we started in home therapy again 6 months later we were happy to hear how well we all had done during that time.
It was not perfect, by no means. However, we were still in a better place then we were when the pandemic started. Besides the rewards of Greyson’s progress during that time, we were rewarded in many other ways from that experience. It reassured us of what we are capable as parents, and as human beings in general. We knew we had the strength to overcome any challenge we faced and that no matter what happens we will always be moving forward as a caring and loving family!
Greyson changed a lot from the time he was 12 months to 18 months old. At a year of age, Greyson was saying baba and mama all the time. He was playing with new toys and playing with them in a different way. He was also playing with his food, and eating all different types of food.
Everything seemed to be going great. He wasn’t walking yet but he was scooting around on his butt. He was in the top 98 percentile for height and weight, so the pediatrician just thought it would take a little longer because of his size. He needed to develop a little more strength before he would walk.
Then sometime between 12-18 months it all changed. He stopped playing the same way, and he didn’t say any new words. Even worse than that is that he never said baba again. The eating stopped as well. He became really picky and wouldn’t try anything new. He wouldn’t play with his food either.
We wonder every day what happened in those 6 months. I think we have some theories about what happened now. Which could fill up a whole bunch of future posts. That being said, when this all happened we were crushed. We were devastated and questioning everything. It was just another step in our journey. The journey of our life with our son Greyson!