Advice from Other Parents

One of the best things I have ever done for myself and my children is find a group of Autism parents that I love. For some reason it took me years to reach out to other mothers in a real way but now I am not sure how I survived without my community. 

I wanted to collect some advice from other mothers like myself who are not quite as new to the Autism parenting world as newly diagnosed families or a family waiting for a diagnosis. So I asked some friends what advice they would give if they were talking to a new family and here are some responses:

“Lower your expectations on the little things…and the big things. So much of what we care about, focus on, value as a society, really doesn’t matter. Save your energy and the energy of your children. The overall well-being of your family matters more than anything else. When looking for supports, acceptance, and therapies; think about what those things mean to you. What will be supportive to YOU and your kids? What does ACCEPTANCE really mean? What therapies and programs ENRICH the life of your child and family? Listen to your gut, always. No one else will be listening, you need to listen to yourself.”  – Meghan, mother of 2 children with autism.  You can find her at: https://momceptional.wordpress.com/

“My advice to new parents is to just slow down and breathe. For me, when my child was diagnosed I thought I had to do everything all at once – start ABA, speech therapy, occupational therapy, music therapy plus recreational activities. It was just too much all at once. I was completely overwhelmed and didn’t have time to really do any of these really well. I have learned to slow down and say no when I don’t think that particular therapy/activity is not a good fit for our family right now” – Amanda, mother of two boys, my youngest child is 8 and was diagnosed with autism when he was 2. You can find her at: www.morethanthewords.ca

“My main advice is three things: 1. we grow as they grow, so don’t worry about down the road yet. You will be equipped to deal with whatever comes your way! 2. It’s not a race to a finish line. When my boys were first diagnosed, I felt like time was of the essence to get everything ready for school, as if Kindergarten was the goal and the finish line. They will be as ready as they are, and however that looks is totally fine entering Kindergarten. The learning keeps happening! Even toilet training. 3. Enjoy their childhood. It’s easy to get caught up in therapies and appointments and goals, but they’re only little once. I want to enjoy the things families enjoy (in our own special way); I don’t want to look back and think I sacrificed their childhoods for therapies and treatments. They are only our children once.” – Renee, mother of 3, twin boys with autism. You can find her at: https://twinningautism.wordpress.com

My advice, which Shamus echoed earlier when I was asking him what he’d like to contribute, is to remember that they are the same person coming out of the diagnosing appointment as they were going in. It may seem like your world has been turned upside down (or not…I don’t know how you process) but in the end, label or not, they are the same beautiful human you welcomed into the world.

Another thing I have learned through the years is: It never stays as bad as your worst day. When it feels like it’s never going to get better or there’s never going to be progress, it always gets better. Maybe not right away and maybe not forever, but it always gets better.

And my absolute biggest advice is to reach out when you are ready! There really are people who have been there before (or are going through it now) and can offer support and advice. Those same people will offer you a non-judgmental ear to listen, a shoulder to cry on, an abyss to scream into, and will celebrate with you when your child does something incredible that may seem small to others.

Now, here is a photo of my kids playing together unprompted for the first time ever because I cried happy tears and need to share it with everyone. Penny was helping Rory find the pieces and then giving them to him so he could finish the puzzle. If you had to see Penny trying to share puzzles (a highly preferred activity for her) even 3 months ago, you would have seen a mega-meltdown. I would never in a million years have prompted this particular kind of sharing! So proud of her for initiating it.

Parents, what advice would you add to the list?