My son Luke was diagnosed as autistic in 2018. Right now it’s 2020, and I’m still trying to accept my new life. At first, I thought it might only be mild autism (Autism Level I or formerly known as Aspergers). But as the years passed and Luke was still not talking at all, I’ve had to start accepting that perhaps his condition is more serious. Early 2020, we got Luke reevaluated and he was put at Level II Autism. I still don’t quite know what that will mean for us, but it might mean that he is never able to fully live on his own.
Sorrow
Knowing that Luke might have to live with us (or in a facility) for his entire life brings up a lot of sorrow for me. Every person wants their child to reach their fullest potential. The first two years after his diagnosis (age 2-4) were really stressful years for us. I felt like if only I could get Luke on the right diet, the right therapy, or the right medication, then he would snap out of his severe autism and be able to jump to high functioning autism. Tons of companies will try to sell you cures for autism. Maybe some have worked for others but none have worked for us. My son still doesn’t talk.
Sometimes I think that I am over the sorrow, and then something will bring it up again for me. I suppose that is the same way grief works with losing a loved one. Having a special needs child is kind of like losing the child. You are losing what you thought your child would be like, all the things you thought they would experience, and the kind of life you thought they would live. Yes, so for me, the sorrow comes back again and again. When my younger daughter started talking and really understanding what I was saying, the sorrow came back. I was so sad that she understood more than my four year old son. It seemed so unfair. And since I believe in a God, I sometimes wonder why he has done this to me and to my son.
Jealousy and Anger
Sometimes I get SOO jealous of people with all “normal” kids. I feel like the parents don’t understand how easy their life is because their child can communicate with them. Sometimes this jealousy leads to hate of the other people or self-pity. Neither are very helpful. But telling myself that I “shouldn’t feel that way” doesn’t help either.
So now I usually just allow the jealousy. I know that the jealousy is driven by the sadness and sorrow of not being able to talk to my child. I try to allow the sad feelings because then they pass sooner. Allowing my feelings looks like this:
- I sit down and usually stop what I am doing
- I ask myself “What does sadness feel like for me? Where is it in my body?”
- I locate it. For me, sadness often feels like a pit in my chest and tightness in my throat.
- I tell myself “This is sadness. It is totally okay to feel sad.”
- Then I just feel it for a few minutes. It usually passes in a few minutes and then I get on with whatever I am doing.
I’ve noticed that the jealousy usually comes when we see people that we don’t normally see. Like when we go to visit family that live out of town or someone comes and visits us. It is a new scenery and new people and sometimes the jealousy takes me by surprise. Back at home and around the people that know us, I experience mostly acceptance.
Embarrassment
I’ve experience a lot of embarrassment with my son Luke. Like the time the waiter asked us to leave a restaurant because he was putting his hands in his diaper and then touching the tables. Unfortunately, when it comes to having an autistic child, you don’t blend in very well. You are often singled out because of his/her non-conforming behavior.
One time on a vacation, Luke accidentally sat on another child’s head while trying to go down a water slide. When the other child’s mom found out that I was Luke’s guardian, she came up to me and yelled for a full three minutes. Thankfully it was a noisy water park so not EVERYONE heard her rage. I was super embarrassed and sad. I didn’t even have the heart to tell her that Luke was autistic and she didn’t stay around for any explanations either.
Hatred
Sometimes I don’t like Luke much. I get angry that he has made my life so difficult (though of course I know that it isn’t his fault and that he is just trying his best). Since I believe in a God, sometimes I get angry at him too. When I get super angry or super sad, I start hating everyone around me. These feelings definitely do not feel good. But when I tell myself that I shouldn’t feel these feelings, they get even worse! So now I just allow it. I tell myself: “Okay, today I am going to feel some hatred. We can do that. It will soon pass.”
Overall
The biggest thing that I have learned so far is that emotions are okay. Negative emotions are okay. They won’t kill me. My body is made to feel them. If I just let myself feel them, then they will pass more quickly than if I try to avoid them by eating, distracting myself, or buffering in some other way.
Anyway, when you are trying to work on accepting your life with a special needs child, think about allowing all of these emotions that I talked about: sorrow, jealousy, anger, embarrassment and whatever else you feel. Do not hate yourself for feeling the way you do. It’s totally normal.
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