Zane turned 20 in February. I cannot begin to explain how this makes me feel. He is our beautiful baby that made me a mommy. Our oldest child. When Zane was about 2 years old, that is when we began to notice things changing. His physical actions were becoming repetitive and communication with him was becoming difficult. At 5 years old, we were told he was in the autism spectrum. That answer didn't sit well in my mind. What did that mean? He was just floating out there with no definition. Not that I believe in labeling, but I just wanted a starting spot.
Now keep in mind, this was fifteen years ago. Autism wasn't as well understood as it is now. We live in a small town, and there weren't a lot of resources to understand the path we needed to take. So we just took it day by day. I would research and read anything and everything that I could.
Zane is verbal, but isn't able to carry on interactive conversations. Anyone looking at him wouldn't sense that he had any challenges. He has severe asthma which restricts any exercise or outside time. We have to take all measures to keep him out of the hospital every year during his peak attack times. He strongly relies on his iPad to communicate and uses music to let us know how he is feeling since he is unable to do that in words. His iPad is his therapy. If we hear one of his sad songs coming from an iPad, we know some sort of emotion is soon to follow. It could be anger, sadness and crying or a full blown attack. When sound gets to be too overwhelming for him, he will use his headphones to help lower the intensity of his surroundings. We do not leave home without them. Overstimulation is a big hurdle that we face, so we have to greatly analyze any outings that Zane attends. We have gone thru many iPads and headphones, which can be costly. But they are very necessary in his day to day routine.
The past five years have been very difficult. Zane's memory is impeccable, he doesn't forget a thing. There have been many regression episodes where he will focus strongly on something that happened many years ago. He is having trouble understanding the feelings and physical changes that come along with puberty. He will ask me, "Why is Zane turning into a man?" I wish he didn't have to "turn into a man", because addressing adult autism has become a test of tasks I never thought I would have to face. He won't be able to support himself with a job. This scares me to death. I can't imagine a life for him after I am gone. I have actually decided that I need to figure out a way to live forever.
Along with this challenge, we have lost members of our family and he can't comprehend death. He also has some favorite celebrities that have passed away, and he will actually cry and sob over this. It is heartbreaking.
Zane has a strong interest in movies, music, travel and all things Disney. His knowledge of movies and actors is astounding. He loves Halloween and still, gives us such original costume ideas every year to create for him. These interests have been a driving force in our lives as well. We try to save up money to seek out concerts, travel destinations and any kind of event that might satisfy his urge to be involved in his passions. The Goo Goo Dolls are his absolute favorite band and he knows all of the words to his favorite songs.
Zane has three younger siblings, a brother and twin sisters. They would not change him for the world even though the things that they have to do to accommodate his feelings and emotions can be a struggle at times. We actually have had people say "weren't you scared to try again" and "didn't you think your next baby would be like Zane". Well Zane has had a lifetime of being excluded by everyone. Unfortunately, society does nothing but judge. So no, I wasn't scared to have more children. I knew they would have each other.
Having a special needs child can cause many financial struggles. We have never been able to have two incomes. My husband and myself have had to take turns working so one of us can be home with Zane. We have also had to seek employment that falls into shifts that work for our life. Zane doesn't sleep well, is up numerous times in the night. We also have a fear of him trying to get out of the house as well, which is why we have alarms on our doors.
My husband and I do not have family members to assist, we face our lives head on, just us as a team. It is difficult at times, not getting breaks or "date nights". But it's our life, we honestly wouldn’t know any different.
Our life so far has definitely had it's ups and downs. With the battles that Zane has had to face daily, we want to provide him with as much happiness that we can. I feel that our family has a story to tell, that we can help others feel like they are not alone like I did. It gave me comfort knowing that other families were out there facing the same challenges that we are and having the uncanny same similarities.
You spend your day to day life just living, trying to make it all work. Then time creeps up on you. One moment you are holding this new baby, and then next you are trying to plan out your life to carry on after you are no longer on the earth. I want my son to be able to enjoy more experiences sooner rather than later because tomorrow isn't promised. There are so many experiences that he won't get to discover.
Now that I am faced with an adult with autism, legally planning out what comes next has become priority and enjoying life has taken a back seat. Healthcare is changing, and all of these things that we didn't prepare for are happening as we speak.
Our family is seeking funding to assist with legal expenses in obtaining guardianship of Zane. This is very vital to be done sooner rather than later. Since he is an adult now, we would need this to make financial and medical decisions on his behalf and to apply for disability.
Zane desperately wants to go and discover, but it isn't always feasible for us to do that. He has had enough disappointments and to add to them....there are no words for that feeling.
If you are lucky enough to have been touched by autism in your life, you will know all that it encompasses. My son is full of love. There is nothing better than hearing him say "You are my best friend" and being the first one to say "I love you". His warm hugs are a constant reminder of how much he can love others. We are just grateful that you took the time out to read our story. Thank you all in advance for any help that you may give.
- Mark Petry
- Ben & Patty Crawford
- Nila Chibisov
- Bruce Perry
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