This Autism Journey

Very few things prepare you for parenthood. Even fewer things prepare you for parenting a child on the spectrum. Here is my list of 40 things I wish I had known before I became a parent.

1. Your parenting journey will be more difficult and challenging than the typical experience. You will grieve the life you thought you would have with and for your child.
2. You will continue to grieve but it will be different as time goes on. More manageable but never fully gone. You will look back in 10 years and see how much you and your child have grown.
3. The younger years are the hardest. It does get better.
4. You will get used to everything being very different and you will adjust your expectations to what works for your family.
5. Your child may not sleep through the night for 7 years and that sleep deprivation will be it’s own form of torture.
6. You will get more sleep! It may not be until they reach puberty, but you will get more sleep. Yay!!!
7. You will cry, a lot.
8. You will find humor in the oddest of places. Laugh a lot!
9. The support system you thought would be there probably won’t be and you will find yourself on your own and feeling very lonely.
10. You will find and make new friends, I promise!! Your friend group will consist of those grandfathered in, those you have met on social media, and other parents of Autistic kids. When you find these friends hold on to them for dear life.
11. You will have to advocate for your child’s education from a very early age. You will become their greatest advocate.
12. You will probably have to fight with the school system just to get a basic accommodation to help your child, like a 1:1 aide.
13. You will walk into your first IEP meeting not understanding a single thing and feeling completely overwhelmed.
14. You will walk into additional IEP meetings with the air of a seasoned professional.
15. Some friends and some family members will have a hard time understanding. You will feel disappointed by this.
16. Your child will get kicked out of daycare because they did not want to implement any changes to help your child. This will crush you.
17. You will get comfortable asking for accommodations and when you are met with resistance you will be completely prepared to explain why they are necessary and warranted.
18. It may be tough to find compassionate healthcare for your child.
19. You will worry a lot.
20. You will get overwhelmed thinking about how much you still want and have to teach them.
21. You will learn to let go of the reins a little when you realize how much your child has learned and what they can do.
22. You will lie awake at night worried to death about what will happen to your kids when you die.
23. You will get punched, kicked, bit, have your hair-pulled, get spit upon and find yourself sprinting after your child when they start to elope.
24. You will start working on your cardio and finding safe ways to block all physical aggression and not take offense.
25. You may be hesitant to have your child try new things because you don’t know if they will get overwhelmed or have a meltdown. You may withdraw as you figure out what to do.
26. Over time you will want to try new things with your child because your own capacity has grown.
27. You will be stressed the fuck out.
28. You will start to realize that anything you want to do will have to be carefully planned to minimize as much stress as possible.
29. You will experience a unique form of discrimination because people are uncomfortable with your Autistic child’s way of taking in the world, i.e. stimming. This will lead to noticing, understanding and having more compassion for those who are marginalized.
30. Your faith will be tested like never before and it may change.
31. The relationship with your spouse or significant other will be under a lot of stress. You will learn to nurture and take care of it.
32. Potty training will take longer than you think it should and will require otherworldly levels of patience to help your child succeed.
33. You will learn that not all suggested therapies are good for your child. (I’m looking at you ABA!)
34. You will be really sad when a good therapist, who works with your child leaves the practice.
35. You may have to put your child on medication.
36. You will start to recognize when there is a sensory overload, an illness or actual behavior issue better than before.
37. You will begin to see patterns to everything and will start to think you can predict the future but it’s really just you getting more perceptive. 😉
38. You will first be consumed with your child’s deficits but will learn to see their strengths, character and triumphs. You will be so proud!!
39. Celebrating the wins, no matter how small, is what will help you get from one challenge to the next.
40. You will get to see society change for the better in understanding neurodiversity.

These are just some of the things I wish I had known before becoming a parent but like most things in life, you don’t learn until you try. No amount of warning would change the love I have for my kids or my pride in being their mom. I just would like to have had a little heads-up before starting.

Thanks for reading.

Take care!

(The drawing that accompanies this post is by me. 😊)