Our Journey all started when we were given a referral for our son Greyson for a speech evaluation at about 18 months of age. I made the call and set up the in home evaluation for them to come and assess Greyson. The day came and 2 therapists showed up and started the evaluation with a lot of questions about development, milestones, etc… The evaluation lasted about 2-3 hours and at the conclusion of the appointment I heard one of the therapists say possible Autism. In that moment I immediately started to cry. I had absolutely no idea the road I was about to go down. When neither of the therapists comforted me or even said “Well we don’t know for sure, let him be evaluated.” They then walked out, the appointment was over, and at the moment my entire world was rocked. I remember walking into the other room since my husband Shawn was working from home that day, and blurting out Greyson has Autism, he is 100% autistic. I knew for sure in my gut after that first initial meeting that Greyson was autistic. After telling Shawn , I think he was a little confused, and didn’t quite understand what I was saying to him. He said we would figure it all out. I then turned to the angry emotion. I said “This will not be happening in our house” or “I’m going to fix this and get rid of it”, and I can’t forget the classic “Why Us” phrase. “What did we do to deserve this?” I was completely ignorant and uneducated. I was one of those people who had absolutely no idea about any of it. No one I knew had autism, it wasn’t in neither of our families, however now I do think it exists in our families somewhere. That following week I went into a depression, and almost then grieving on what I thought life would or should look like.
After those few days of sulking, I thought to myself I can either sit here depressed and do nothing, or I can get to work and learn everything I possibly can so I can help Greyson. From this point on I have completely enthralled myself into the world of Autism, and I would never have it any other way.
Finding Speech Therapy for Greyson has been challenging throughout our journey. During EI we were constantly at war with the case manager. Our OT and DI encouraged us to try and get him speech services. They went as far as offering to support us with the case manager. The case worker continually refused. Sighting that he was to young and would not be a benefit until he gets a little older. We believe that she just didn’t want to offer him more services.
Moving on after EI and when we went into ABA we started to research getting him in home speech again. That is what his developmental pediatrician required based on his behavioral challenges. We did find a few companies that offered in home speech but they all had a long wait list, about a year, and they still weren’t sure at that point if they could get him in.
One blessing that came out of the pandemic was that many Speech providers started offering Telehealth services. It was perfect for Greyson. We started him at the best of the best…Children’s Hospital of Philadelphia. He did therapy once a week and surprisingly was very good with the zoom sessions. we always opted for in home since its natural environment and proven to be the best technique. if a child is distracted at home and can learn to work in their enviornment, then they will be able to carry that over in any setting. Now after 12 weeks he has graduated from Speech Therapy because of how well he did. So now we move onto finding an in home Speech Therapist that specializes in oral prompt training which is a specialized technique. And so the journey continues.
Greyson has always been really engaged in music. When he was roughly 4 months old he fell in love with Mickey Mouse Club House. It was great, but he only liked one particular episode, Hibiscus Hola. So we were playing it most of the day for him. He would hardly notice if we played another episode, but as soon as that Hibiscus Hola came on, he would scream and get super excited.
When he was younger, Alex would sing to him when he was upset. She grew up spending her summers at the South Jersey Shore, in Wildwood. So she loved the songs Wildwood Days by bobby Ridell as well as On The Way To Cape May. Greyson definitely takes after Alex because it always seemed to calm him down.
Eventually he started watching all the the Mickey Mouse Club House episodes. He still had favorites like Pirate Adventure and Space Adventure, but he actually liked all of the episodes and got really excited whenever the songs were on. Things really took off shortly before the lock downs. He started to get excited when we played music. So much so, that we started doing Dance Party Nights during the pandemic. Every Friday Night Bob Kelly from Fox would do his no shower happy hour show from his house. Thousands of people watched the Facebook Lives. We all really enjoyed the escape from our mundane pandemic lives.
Greyson’s love for music has grown so much over the years that now he makes us read nursery rhyme karaoke videos on Youtube kids. He entertains himself for hours with them. My hope that is one day he will be the one to sing those songs and we can listen with all the joy a parent can have.
Greyson is completely obsessed with water. Every form of it, the beach, the bathtub, pool, water table and even lakes. We even treated him to mid day swimming time in the bath during the winter last year. It gave him time to enjoy water play while also helping him balance his out his sensory needs. Water is very calming to him.
Every year when the pool opens he gets a little anxiety the first time we go in but after that you can barely get your shirt off before he jumps right in. He has become mister independent in that pool. He always wants to swim by himself pushing off us and only coming over to us for a quick break. We even let him take off his puddle jumper from time to time. He used to drink the water sometimes, probably since its a salt water pool, but we finally got that under control and got him to stop.
He loves the water so much that when we go to the local hiking trails and he sees the lake a tries to run right in. Of course it is the same on the beach. On top of all of it he puts his hands in every drink I have. I have to cover my drinks sometimes so he doesn’t do that. But we love that he loves the water so much since we love it to and it is its own type of therapy for him that truly brings him a level of peace and serenity!
When Greyson was about 1 years old, he was a phenomenal eater. He tried most things and enjoyed them, including bananas, pasting, eggs, broccoli, hummus, & a variety of snacks and cookies, as well as many purees. He played with his food and truly looked forward to meal time. He was always excited, laughing and was nothing but smiles.
Shortly after that we started to expand his diet adding in Gerber meals. He enjoyed them right away and liked pretty much any of their meals. We also added in yogurt, which is probably his favorite. He was probably going through a growth spurt because he was eating like a horse. Close to 5 meals a day.
At that point we decided to introduce foods we were eating. He had little to no interest in our food. In fact it become aversive. It was almost as if he was afraid of new foods that he never tried. He would push it away and get a look on his face of pure disgust. We have never stopped working on his eating though. We have picked up a lot of tips and brought him for a feeding evaluation. We have slowly been integrating desensitization therapy into eating and getting him comfortable touching and being around food. We got him on the wait list for intensive feeding therapy at, The Children Hospital of Philadelphia. CHOP is one of, if not the best autism treatment hospitals in the world. It will be a year wait but within a couple weeks we should be able to get this challenge under control.
Greyson struggles a lot with anxiety. He is extremely careful and cautious with many different things. An example is when Greyson is walking down the stairs he is very careful and takes his time, which is great. He’s also very cautious when we go to the playground and he uses the swings. We have noticed his oral stimming is connected to his anxiety.
When someone sits in the back seat of the car he must have that person touching him in some way, however we don’t need someone to sit in the back, it’s only when they are next to him. I also noticed that if I tie my shoes while I am in the backseat with him he gets very anxious because if he doesn’t see me sitting the right way it really worries him.
We put him on Inositol back when we started Biomedical treatment. It has really helped him dramatically but it still has not completely eliminated the anxiety. We make sure we are comforting him as much as possible when we notice it and we make sure we always have his chew toy because it helps him manage the anxiety. We have also used a lot of exposure therapy to gradually expose him to different things. Making sure we don’t push him too far and stop before it becomes any problems. We also put Greyson on CBD oil, and what an improvement we have seen. Anxiety is completely cut in half, and we also now have babbling. It has been a total game changer in our lives.
We are obviously still working on it and I will make sure to keep you posted.
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.