The Emotions That Accompany Special Needs Parenting
One of the main reasons I started blogging about my life with an autistic child was to help other parents learn to talk about the emotions that go into raising a child with a lifelong disability. I knew what I was feeling and I knew I couldn’t be alone. Yet, it felt that way.
The Roller Coaster
If you are anything like me the whole thing feels like a rollercoaster. In the beginning you would’ve done anything for your child to not be on the spectrum. Maybe you were in denial. Maybe you truly believed in your heart and soul that the doctors were wrong. Or maybe deep down you knew. Either way the emotions were so confusing. The future was unknown as well. In my case I didn’t know (and still don’t) if my son would ever speak or live on his own. Those are some pretty heavy things. Where is the grief training for that?
There are so many emotions. Suddenly, your life is different. And you aren’t special despite everyone in your life saying things like…”I don’t know how you do it” and “You are a super mom!” Except you don’t feel special. You feel tired and confused. You feel lost and worried about being this child’s advocate for the rest of your life. It’s not like you were given training to care for this little human. I always joke that my autism manual got lost in the mail. Heck, I’m still waiting for it!
Will It Be This Hard Forever?
As Cooper’s parents we gave up our lives willingly for autism. Our son is our world. We obviously didn’t think twice. Cooper was diagnosed and we jumped head first into giving him the best life possible. And now, almost seven years in, we are struggling to accept that it might be this hard forever.
Step one is accepting that your child has autism. Step two is accepting that it is forever. And neither one is easy to do.
I invited my son’s dad, Jamie, to do my video with me on all the tough parts that go into raising a child with a disability. This is one of the harder videos we’ve done and I’m so thankful he did it with me. It touches on isolation and resentment. Two very real emotions that are tough to talk openly and honest about.
I too have a nonverbal autistic son. He is 3yrs old and is very much like Cooper. My husband and I chase our son around whenever we go anywhere. He is a runner and doesn’t watch where he is going. We too have tried camping and we decided that the next time we will have to build a gated area for my son. I’m sure people will stare because he is the size of a 5year old but he needs this boundary. Just like he needs a stroller for public places he refuses to walk and will just drop on the ground . I just wanted to thank you because as a mom of a non verbal and moderate to severe kiddo it can be pretty lonely so thank you for letting me know we aren’t alone.