Have you ever wondered that? I used to all the time. I would be at a particularly low point in our Autism journey and I would ask that question to my mom or a friend or a doctor. And no one would tell me the truth. I just needed to hear if it was going to get easier or get harder. I needed an honest answer. The problem was I was asking the wrong people.
I’m not surprised I get asked this question every day by parents of newly diagnosed kids. I get it. The answer is complicated though friends. Six years in and I can say certain aspects have gotten easier and others have gotten harder. And I won’t lie to you. I won’t sugar coat the hard parts of raising a disabled child. It is lonely and scary and isolating. And admitting that doesn’t mean it isn’t also joyful, amazing and so unbelievably worth while. It can be both.
Parts That Got Easier With Time
I was able to stop apologizing for my child’s disability
I know that sounds weird but we all do it. I’d apologize because he was loud or messy. I’d apologize for meltdowns. I’d apologize because we couldn’t go to a friends house or had to miss a family event. Now, I don’t feel bad about it. Cooper has special needs. If they can’t accommodate then we don’t go. I no longer feel guilty and it was life changing.
I stopped picturing him without Autism
I had to grieve the child that I thought I was going to have. I kept thinking things like…I just need him to start talking. If he would just start talking this would be fine. Now, 6 years in, I no longer think about him talking. I don’t think about him not having Autism. I am past all that. It is life changing. I feel so much joy for my son just the way he is.
I built a village around my child
Once I did this I felt so much better about life. I had people around me that understood my son and they had his best interests in mind. These are the doctors, teachers and therapists that interact with your child. It took us years to find the right people but it was 100% worth it.
I became comfortable with Autism
Autism doesn’t scare me anymore. In the beginning it did. I was nervous. I was scared. Now, I’m way more relaxed. If Coop’s has a meltdown we leave somewhere. And that’s fine. We both know our limits and what we can handle. Life changing!
Parts That Got Harder With Time
The business side of Autism
I could spend all day talking/begging/pleading/persuading/fighting with insurance companies, social workers, and financial aid workers. It’s all a battle and none of it is easy. I feel like I am constantly proving that my son has Autism and that we need help. It’s awful and it’s progressively getting worse.
The trial and error part
I thought by age 6 that we would have found the right therapy path, diet, etc. We haven’t. We are always trying new things. We are modifying and canceling services all the time. It’s totally trial and error. And most of the time we are going at it blind. And everyone has a suggestion. My advice…listen and then research on your own. Don’t throw yourself into every thing. Be smart and conserve your energy and time and do what is solely best for your child.
Raising a typical child alongside an Autistic child
This is hard all around. We often spoil our 4 year old because we feel guilt. I know this is a natural part of the journey but it’s a hard line. He also mimics his brothers behaviors. He screams, meltdown and throws way more than he should. He also doesn’t understand why he has to follow rule his brother doesn’t. All hard.
The guilt hasn’t gotten any better for me. I still feel it all the time. Should I be doing more? Should I be trying harder? Should I be more patient. This is mommy guilt supercharged.