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.
We have recently been dealing with some regressions. This regression is focused around Greyson’s challenging behaviors, in particular his meltdowns. It is a huge challenge for me as his father. It is really tough to see a regression and I know there are part of Autism Spectrum Disorder, but it is still difficult to deal with the emotions. You do so much work and it can feel like it was all for nothing.
Another part of it that has really affected me is that it has given me a feeling of helplessness. It feels as though I am failing as a father because I can’t help him with meltdowns all the time. My heart just breaks for him. All you want to do as a parent is support, help and protect your children. However, it is not always possible for parents to do that.
Despite the overwhelming emotions and desire to help him I do understand and accept that I can only do my very best and it is not 100% up to me. Unfortunately, Greyson needs to help make it happen too. I can only do my best to guide him.
The feeling of helplessness is a very strong and defeating emotion. So I constantly have a mental battle taking place in my head. My self talk is fighting with itself. Not knowing where that battle will go or where it will lead, creates anxiety, fear and confusion. I pray everyday that we get past this, and that I can make sense of the messages all these strong emotions are sending me so that I can learn, grow and become the best father possible. A father that Greyson needs and deserves!
We have had situation arise with therapy recently.. Our therapist has had a personal issue which has lead to her taking leave from work to take care of it. We only have one therapist right now and now that she has taken leave we have none for the time being. Therefore, it is on Alex again to take over as Grey’s therapist.
Alex is extremely good as a therapist, and has a ton of knowledge and experience. We have been here before, during Covid and while we were between therapists in the past. This time we are expecting a very long wait. Our BCBA alone has 8 cases that do not have therapists right now and are waiting. This could be our situation for a while, but I have all the confidence in the world in Alex’s ability to make it happen.
I know it is a lot on her but she was already heavily involved in therapy everyday, and Greyson and her have a really nice working relationship. It has only been a week so far and I have to say Alex is crushing it! I was watching her videos of Grey working with her and she is amazing and so is he! Greyson is so focused and he is engaged and learning so many great things. Ales is leading and teaching him like an expert. The videos I watched were incredible and I can’t stop thinking about how great a job Alex is doing.
This is when I realize how lucky we are as a family! She is a great mother, actually she is incredible! Greyson and I could not be luckier and our whole family unit is just blossoming right now! Despite the challenges and struggles we face we are always focused, engaged and solving problems! We are a united family that continues to enjoy our journey!
Alex bought an oculus about 8 months ago, she spends a lot of time home with Grey while I am out working and it was an ideal hobby for her to get into. She is a Tech junky so it fits her interests perfectly. I have played it with her and it is incredibly cool. You can watch movies, play games ride rollercoasters, travel the world with a couple clicks and even create virtual worlds and hangout with virtual friends in them. It is an incredible platform! The technology is amazing and it is crazy to think what the future holds.
So the other day we decided to let Grey try it and I think Alex may have lost it forever! He absolutely loved it. He abandoned his iPad and refused to let go of the oculus. Looks like it is his now. It was absolutely hilarious watching him. Alex was able to split her screen and record a video of what he saw on one side and the other side was watching him move around. He was running into things and reaching out to touch things he thought was real. We entertained ourselves for an hour just watching him. These are those moments that make life so great! Moments that you just do something you didn’t really expect to do and it just turns out to be a blast.
Now that Labor Day has come and gone we transition form summer into fall. Saying goodbye to summer for our family is always filled with rushes of emotion. As a family we love the summer and enjoy so many different summer activities. However, after the hot dog days of August, fall feels wonderful. We enjoy the fall holidays and numerous activities that the season brings.
It is always hard to say goodbye to the summer because of how much Greyson enjoys the beach and the pool. It honestly probably affects me more than him. I feel so disappointed knowing he won’t be able to enjoy swimming anymore this year. Just because I enjoy spending time with him swimming and bonding on a deeper level every time we go. It has really helped us spend more quality time together. That makes the summer ending a sad time for me.
Since we can now say goodbye to a wonderful summer filled with wonder and enjoyment, we can also say hello to fall. A time of year that I highly enjoy because I was born in fall and love all the activities the season brings. We have a whole new array of activities to enjoy, from Halloween to Thanksgiving and Foliage Walks to drinking apple cider with a donut. Who doesn’t love an apple cider don’t with some cider. Transitions are always tough, but it is exciting to have a fresh season to start and enjoy to its fullest.
Being a parent is one of the hardest jobs anyone can undertake in life. However, it is probably the most rewarding experience life has to offer. Isn’t it ironic, how these two realities are both true and yet are at complete opposite ends of the spectrum, and life parenting a child with Autism makes both of these statements even more of a reality for me.
The challenge is truly real and nothing can prepare you for it. It is emotionally, physically and mentally draining. It takes everything I have inside to get of each day and be the best possible father I can be. But the joy and satisfaction I get from all of it makes it worth the challenge and the hard work. I am sure many other parents would agree with me and that they can relate to how I feel. The complications that arise from raising a child on the spectrum, intensifies everything. The emotional and physical challenges, and it affects every part of life.
My professional life and our marriage have not escaped the tornado that has become our life as a family. The added pressure just makes those parts of life even more challenging than they are in the first place. I do know that through all of the struggles and challenges we encounter as a family, we are lucky enough to live a life of pure joy, happiness and wonder.
I have made it a point to spend as much time as I can with Greyson. I want to become closer and sine he is non-verbal the best way to do that is by spending quality time with him. Even though we are working so much all the time I make it a point to spend at least an hour playing with him everyday. That time is dedicated specifically to him with little or no distractions. More like as little as possible since the dogs require some attention.. The dogs can get a little out of control at times and you always seem to need to break up a potential fight.
With working so much it is difficult to go out and do a lot of activities, so since it has been summer our complex pool and playground are one of our favorite spots to hang out. Greyson loves the water so it is a naturally enjoyable experience for him that allows us to bond. Despite the fact that he can not speak to me very much, I like to talk to him a lot and explain things. I act as though he could speak to me. I have even taken him fishing a few times. I don’t know that I would say we were really fishing as most of my time was spent keeping him from jumping in the lake.
I have really connected with him in many ways on a deeper level throughout this summer. I realize it is not what we do together that makes the experience valuable it is simply that we are together! I really look forward to our time together and I think our bond will continue to grow and flourish!
I got a call from Alex while I was at work the other day and I do not think I have heard her so excited in years! She started talking a mile a minute, so I asked her to slow down and tell me what was going on. So, she did and she asked if I remembered the flash cards for Kindergarten and 1st Grade she made for Greyson and his homeschooling program. I told her that I did. They haven’t used them in a while but Greyson knew them all the first try 6 or 7 months ago.
She said that she had been talking to the RBT about his spelling and reading and mentioned the cards and she said to bring them out. They went ahead and did them and he was perfect. They decided to test how smart he is, which is not always easy, and they started making 2nd Grade and 3rd Grade cards. Well, he got all those right too. Finally, she said she skipped 4th Grade and went straight to 5th Grade Cards and he once again got everyone right.
Our RBT used to work in the Public School systems and said that kids his age don’t know many if any of those words. She was super impressed. She said he could win some kind of world record. So they decided to look it up and now they are going to see if they can video Greyson and time him to see how many words he can do over a certain amount of time and get him into the Guinness Book of World Records! The therapist said she really thinks he is a genius and can do incredible things.
When Alex told me the story I was incredibly excited! I know how smart Greyson is but this is a huge thing for him. I couldn’t be more proud of him, and the only thing that can stop him is himself! I know a World Record would probably mean nothing to him and mean a lot to us but I think it is amazing because it would show the world that everyone is capable of something incredible regardless of their challenges!
Greyson is a sensory seeker in a big way! A lot of children on the Spectrum have sensory challenges. Some are seekers like Greyson and they try to seek out sensory inputs like particular noises, motions, or visuals, like lights. Some are avoiders and do not like loud sounds or flashing lights, they avoid them. Still others are a combination of the two, and can flip flop back and forth. Greyson is a combination but leans towards seeking.
Sensory challenges can also be specific to a particular type for different people or to a combination of them. So Greyson is a vestibular motion seeker, but a taste avoider. Obviously, and of our senses could be an area of attraction or avoidance for a person on the spectrum.
As I mentioned above Greyson is a big seeker of vestibular motion, like rocking, swinging, falling, getting tickled and picked up. He seeks these things out extremely frequently! I have been making an effort to really spend quality time with him every day when I get home from work and boy has it been a lot. The other day I got home from work and Alex left for work and like most days Grey was very excited to see me come home and immediately engaged me to play with him. I held him off for a half hour to walk the dogs but then when I got back I went right into playing with him.
This particular day was unique because I played with him swinging him and tickling him for 3.5 hours. He just never wanted to stop. No matter what I did I couldn’t break free. Normally after about 45 minutes he calms down and goes and watches a show, TV or plays with a toy. But not that day because Daddy was the toy! I have to say it wa s a lot physically and or course it is not always easy to spend that much time playing without having other things to do, but it was so well worth it.
There is nothing more enjoyable then seeing him smile and laugh! I am sure most every parent would agree. That is one of the things that makes being a parent so rewarding! I spent the time and did not mind, because it won’t last forever. Eventually, he will grow up and we won’t be able to do stuff like that anymore. So, I just enjoyed every moment of the time we spent together and I will continue too do that with every experience we have together.
After almost 3 months now, we have finally been able to connect with Greyson’s former RBT. Mr Ed was a huge part of our families life and I don’t know where we would be without all his help and support over the past 3 years. We schedule a day at the beach for all of us to spend some time together and reconnect. It is a great place because we all seem to love the beach.
For the week and a half prior I talked about the beach and seeing Mr Ed every day to try and build Grey up and get him ready. We all really wanted him to enjoy the reunion and experience. I thought we were prepared and knew what to expect, but as you will find out boy was I wrong. I could never have expected what would happen.
Once we got to the beach, finally found parking and lugged all the stuff up, over the boardwalk, got our badges and finally got onto the beach, Greyson completely ignored Mr Ed. Like he didn’t even exist. He just sat in his wagon and watched his videos on my cell phone. The cell phone is necessary in a number of situations when we go out. Unfortunately, in many situations it is the only way to keep him put so he isn’t trying to run into the street or run away or something worse. So, he just watched his videos and when Ed came over to him he ignored him, refused to interact, gave him dirty looks and pushed him away. I would have never expected this reaction.
After some time they tried it again and Greyson was reluctant but interacted a little bit. We quickly realized Greyson was mad at Ed. He can to yet really vocalize or communicate how he feels and even if he was able to I am not sure he would know how to interpret the feels he was experiencing. It was hard for all of us to watch, but I guess it was still a good experience for all of us to learn from.
We spent a few hours together and Greyson did end up warming up and interacting and playing more. He looked really happy for a lot of the second half of the day. Then, it was time for Ed to leave and Greyson didn’t seem to want to let him go, continuing to get over to him and ask him to pick him up, and once we finally said our goodbyes Greyson started looking all over for him again. It was a very sad experience for Alex and I at that point. Not being able to do anything or take his pain and disappointment away is so challenging as a parent.
It even brought tears to my eyes. As a father all I want to do is make my son happy and unfortunately that is not always possible. We did spend a few more hours at the beach and enjoyed every minute of a fun family day out, playing in the sand and in the water. It is a place that Greyson really loves and we want to make it a bigger part of our lives eventually. Once we decided to leave what other way could a wonderful beach day end then Greyson passing out in the car once we hit the road! Just the way we all used to when we were kids. A nice car ride nap after a long, fun day on the beach!
Life continues to smack me around if not every day, surely every week. It feels like every day something happens to challenge me more, or in a new way. It is so frustrating when your having trouble with different things in life and you just seem to be stalled out. I feel that I have become a very strong person over my adult life, over coming all different challenges all the time. However, I am tired of a lot of it. I know who I am and what I want, what I am capable of and what I need to do to get there, however, life seems to get in the way really often.
I know eventually everything will get to a better place where I only have a challenge pop up here and there and I will easily overcome them, but right now it seems like such a long arguous process and journey to get where I want to be. I am frustrated from being behind the 8 ball for so long and having to constantly starch and crawl my way out of it. Getting knocked down and getting up over and over again. I always seem to ask God why has my life gotten like this and why is it taking so long to make progress. I believe whole heartedly he will bring me to a place of joy, peace and abundance but I am getting tired of waiting. But one thing I have learned and I have really embraced is to be thankful for all of it, including the bad stuff and difficulties. He did it for a reason, and I don’t know why while it is happening but I do know I am learning something from everything I go through, and whatever I am learning is needed in order to make the next step forward.
I know what ever I am learning and getting from these challenges and difficulties is a lesson I need to learn in order to be able to prosper as he propels me forward in the future! It is a great mentality and disposition to have in todays crazy and chaotic world. I think it is serving me well! I just hope that he almost has me ready and in position to get me to that place in the near future because he knows I am getting tired of waiting!
I know a lot of you probably feel the similar to me about life and everything that you go through. I know many of you can relate to me, and it is definitely really hard to get through tough times. But I hope you can take something from this post and feel you’re not alone, find some motivation and build on it. I ask you to pray for me and our family, as I always pray for all of you and your families! It is the only way to find the answers! Thank You!