Trust me, I know how you feel. You don’t want to name your feelings, but they are in there. Disappointment, fear, anxiety, blame, jealousy and last but certainly not least, determination. All your feelings are valid, and each of them needs to be processed. Here are a few tips to help you navigate and move forward.
Take the time you need to grieve. You might feel selfish, but there is a necessary grieving process. No, you didn’t loose your child, but you lost the future that you expected. It’s natural for a parent to envision the future you want for your children. And its quite beautiful to let the expectations go. Letting go of expectations will help you live in the moment and celebrate every little milestone you’ll achieve. I wish we could do this will all children, but it often takes something like a diagnosis for this to happen.
Remember this… Your child is still the same child you loved before you received the diagnosis. This news hasn’t changed your child. It simply shifted your thoughts and actions towards her or him. The diagnosis won’t define who your child is, but it is a necessary tool for you to understand your child and the resources and therapies you need to move forward.
Try not to get caught up in the blame game. Human nature is to try to understand why something happened. But it can also drag you down. You’ll find that you spend more of your time blaming and complaining and wanting to fight, instead of moving forward and finding ways to help your child.
Do your research. This will be ongoing for a long time to come. So research what you can when you have time. Every child with autism is so different. Research the exact behaviors you are dealing with and start to learn and understand the language. Research the gut/brain connection and gluten-free diets and try it out for yourself. This is a great thing you CAN do, while you are waiting for evaluations, therapy appointments, etc.
Get a mentor. Lots of organizations have a parent/mentor program. I know Autism Tree in San Diego has one. Search for non-profits in your area and read up on them to see if they are a good fit. Most non-profits are equipped to team you with someone who has been in a similar situation and hopefully someone who is geographically close to you. A mentor can help you find the right pediatrician, the right diet, the right therapists, etc.
Trust your instincts. You know your child much more than any therapist or doctor. You have an inkling into what she/he likes. If you have the time, learn the tools to work with your child. My husband and I took a speech therapy training so that we could do the work with Luca. I couldn’t handle the stress of having therapists and therapy appointments 4-6 times per week. I am his mother, I know what he needs. So, I wanted to do the work. I know that I am fortunate to be able to do this. Some parents work long hours or have young children and need to rely on the therapists. But I say again, trust your instincts to find the right therapy and people to work with your child. You want therapists that will listen to your concerns and share with you all that they are doing with your child.
Share your story. For far too long, we have been hiding the diagnosis. Parents have been afraid that the diagnosis would follow their child and that it would label them as different. It is my opinion, that this perpetuates the fear and possibly the bullying of these kids. The more we talk about it, the more others began to understand it. And the more they can be available for support. One example, Luca had a neurotypical friend in pre-school whose Mom has a summer camp at her home. She approached me and told me she would love to have Luca at summer camp. I was surprised, nervous and incredibly grateful that she wanted to include Luca. I sent her a long list of possible behaviors and how to handle them. I told her to call me if it became too much, and even asked if she wanted me to stay and help. She waved me off and explained that she was grateful for my guidance and my willingness to share Luca. She wanted to learn more about kids with autism so she could feel comfortable including them in her summer camps. This is just one of many stories. I have neurotypical Mom’s tell me all they time that they are grateful for my openness, and that they have learned so much about autism from my willingness to share. I feel this helps Luca because it isn’t something he’ll hear about from whispers, and if kids make fun of him. He knows that autism simply means ‘awesome brain’!
I hope this list helps you get started. Give yourself time to process, time to find the right therapists, and time to spend with your child. The moment I shifted my perspective and stopped thinking I needed to ‘fix’ Luca, everything changed. I started to see a little boy that needed me to change the way I was showing up. He needed me to learn new ways to improve our communication. The diagnosis didn’t change him, it changed me. Its made me a better Mom. So cry, grieve, then get out there and do something about it! As always, we are sending LOVE.