Whose Autism is harder?
Believe it or not, this question comes up often when someone unfamiliar with Autism learns I have 2 children on the spectrum. All honesty, I am not offended (anymore), but rather conflicted on how to give a short answer.
It usually starts off with, "wow, I had no idea Jazlynn has Autism. I would have never guessed that. She talks so much." Then it is followed by, "whose Autism is harder?"
Having two kids on opposite ends of the spectrum is challenging. They each have different needs and abilities. Noones Autism is easy. There are days and moments that are easier to manage, but Autism is hard. Like really freaking hard. Some days I feel like I may not make it out alive.
Dyllan, my first born, just about 7, has zero functional verbal language. I have mentioned before that he speaks with a device called the Accent 800. Its a nifty little device that allows him to communicate through pictures or use a keyboard to type words and sentences. He has worked extremely hard to be able to communicate with this device. He is well aware that this is his voice and I am so proud of how far he has come using this. But its still a tough pill to swallow having a grown child that doesn't speak. Im not sure its something I will ever get over. As the weather gets warmer I feel myself getting sad, as I do every spring. I think for me, the older Dyllan gets the more emotional I get about his Autism. At this age I thought I would see him hanging out with the other boys at the baseball field or at the playground. But instead fear the lack of his safety awareness.
For the most part, he is pretty laid back and easy to please. Is happy as a clam with a dum dum pop and his toy helicopters. He laughs a lot and is content playing on his own and doing his own thing. Loves to watch movie clips and nursery rhymes on the ipad. He has a sweet personality and loves to be cuddled. Dyllan is oblivious to the evil in the world. And in some ways Im glad, but it also means he can easily be taken advantage of. He does not have a mean bone in his body. Is unaware of social conformity and has no problem jumping up and down or laying on the floor in public to see something at a better angle. He is typically trustworthy of other people (unless you are wearing a stethoscope or carrying an otoscope) and then BOOM!
My sweet and laid back happy boy went to the dentist and has never been the same. He has been on high alert and afraid of people. He has been crying and telling me he is hurt and scared on his device, but can't tell me why or what has been hurting. I have brought him to the doctors office numerous times trying to get an answer. Is it his ears? Did he hurt his head when he fell in the backyard? Does he have a broken bone? Why are you so scared to go to sleep? Why are you now afraid to be alone or without me? Literally came out of left field. Well, turns out the closer he gets to puberty, and things are changing, the more his anxiety increases. He literally is suffering from PTSD from the dentist. The dentist office put him over the edge. He was put under conscious sedation, wrapped in a straight jacket looking thing and he is now deathly afraid of everyone. He is afraid to go to sleep because when he wakes up he thinks he is going somewhere awful.
This month has been emotionally and physically exhausting. He hasn't slept since the dentist appointment. I stayed awake with him night after night crying and researching what could be wrong. I held him on the couch night after night after night. Until last night. I let him take my side of the bed. I gave him all his favorite pillows and my husband rubbed his back until he fell asleep...and he slept. He felt safe and at ease. He was finally able to let himself sleep without fear and anxiety. But now my heart breaks for him. He is scared and there is nothing i can do about it. I was hoping it was some sort of infection we could take care of with medicine.
Dyllan can not 100% let me know his feelings and needs. He is unable to let me know if something is wrong or he is being hurt. We are working hard to teach him how to do this, but he's not there yet. Thats the part that kills me inside and is hard. I don't know exactly what he's thinking and its heartbreaking. How at almost 7, do I still have to use my maternal instincts to detect how he feels or what he wants and needs. I feed him things that I believe he loves, but what if he doesn't? I take him to places that I think he likes, but what if he doesn't? I know he loves planes, trains, and excavators. I know he is fascinated by clocks and loves to play outside. They way he loves is like no other. Dyllan being nonverbal is very hard, but by God do I love him so much my heart explodes each time I hear his giggle. He gives the best hugs and his face is angelic and makes people smile.
Then there is my Jazzy girl. She is strong willed and has a personality bigger than life. She is funny and loves cats more than anything in the world. But damn, she challenges me on a daily basis. If she does not feel like doing something, let me tell you, she will fight you to the death. She is easily triggered and gets very anxious. But if she is doing something she is passionate about she is happy and her smile is contagious. She loves to read, do puppet shows and loves to play on her iPad. These things are very soothing for her. If she is outside her comfort zone, it sends her into fight or flight mode and it gets very challenging. I never know how her mood will be on a day to day basis and some days are unbearable. She can be over emotional and irrational and on those days Im exhausted and emotionally beat down. Some days its hard to watch her be irritated and lash out towards people who love her so much.
This is not what I pictured my life with a daughter to be. When I found out I was pregnant with a girl I pictured us going to dance lessons and gymnastics and getting our nails done. The thought of participating in such things and being surrounded by so many girls makes her anxious. We try to push her outside of her comfort zone, but I can only push her so far and can not make her do something that makes her so uncomfortable that she lashes out at people. It takes the joy out of it and in the end is not worth it.
She is so smart and memorizes things like dates and numbers like nothing Ive ever seen. She knows all the birthdays of all her family members. She knows phone numbers and addresses. She will tell you the names and birthdays of all her ty beanie babies. She remembers when and where she was when she received presents and toys. She is sweet despite her challenges. I find things we can talk about together. We talk about cats every single day. She loves essential oils and reading the catalog to learn about what each oil does. She loves to dance in the kitchen and loves to have her back rubbed. She loves gardening and is over the moon when she sees something she planted grow and flourish. She is very happy at the beach or in a pool. She also enjoys painting and drawing. We try our hardest to find things she is passionate about and help her grow and learn through those things.
Unlike Dyllan, she has no problem letting you know how she is feeling or whether she needs space from someone. But dear Lord, she has no filter. At home I manage with the no filter, but In public I have to be the helicopter mom because her no filter scares me. Sometimes when we see someone approaching her, even if its just to say how cute she is and to say hi, my heart starts racing. I wonder what will come out of her mouth. I find myself holding my breath waiting and hoping its not something like, "can I hit you?" or "please go away!" Ugh. A lot of the times we have to guide her to give an appropriate response.
Her social anxieties interfere a lot in her life. Some days she can not get out of her own way and I feel terrible for her. If she could tone down her fight or flight a little I think she could participate in more things. Even family events can be hard on her. We recently had family from out of state come and even though Jazzy and her cousin are only 8 months apart they barley communicated with each other. Jazzy got very defensive with her being in her space and it broke my heart. They should be the best of friends but Jazzy just sometimes doesn't have it in herself to let her guard down. And then there it is, right in front of my face what a neurotypical girl her age is like. Thats hard.
She has a hard time waiting in lines and her anxiety kicks in and we feel the stares.
The dreaded stares. Especially when we are out with all the kids. If jazzy is having a melt down and Dyllan is stimming, as well as having 2 others in tote, we feel all the eyes. But guess what, they can stare all they want. These are my babies and I know I do my damn best and sometimes there is nothing I can do to avoid some of the challenges and behaviors my kids on the spectrum display. I feel like this is the problem about the lack of Autism awareness. People assume that all autistic kids are more like Dyllan. When people see Jazlynn having a hard time they assume she is acting out and being a brat and judge our parenting. What people don't see sometimes is Jazzy is trying her hardest to interact and tolerate being around people to the best of her ability. What people don't see is how she makes us all laugh. I get to see her sweet side and how free she feels playing outside with her brothers. I get to see a girl who is so passionate about animals she plans on being a veterinarian she grows up. When she is comfortable, she is sweet and loves to be with us.
So both kids on the spectrum have their own set of challenges, but its other peoples lack of awareness and support that is the hardest part. I feel my neurotypical kids suffer a little because I want them to have friends over and have a "normal" life, but it is hard on my kids on the spectrum. They are less tolerable of people in there space and touching their things. Then I have to explain all the Autism and its exhausting. Thats whats hard. Trying to give all of my kids who all have different needs the best life I can give them. Thats whats hard.
There is no short answer. Autism is hard and neither end of the spectrum is easier.