First, please remember that your child is still the same person they were yesterday, before the diagnosis. They still love you. They still have their favorite foods. They still like the same shows. Nothing has really changed except your perception of your child. Autism is only a small part of them, like the color of their hair. Autism is not the total package.
Now for the practical stuff. Buy a binder or a file folder and start keeping all of the paperwork you get from doctors, therapists and schools. If you child is little, you never know what you will need when they are older. Keep it all now. You can always shred stuff later that you don’t need. I recommend shredding or destroying all paperwork. People with disabilities have a high rate of identity theft and that’s not a headache you need.
As your child gets older, you’ll be surprised how many times you will be asked for the original diagnosis letter. When Casey was diagnosed, the doctor made notes in his file (on paper) and that was it. I had to call and get a copy of those notes when we needed it. These days, with everything on computer, it’s much easier and you usually leave the office with paperwork.
Keeping all of the papers is so important, but I really think the most important thing you can do for yourself and your child is to find other families who are living with autism. My best friend has been with me since we were five years old and has been through everything with me. She loves me and the kids and would do anything for us. She has heard my anger, my frustration, my exhaustion. She has held me while I cried.
But, as much as all of that means to me, she doesn’t live with autism. She understands, but it’s different talking to another autism parent. They “get it” in a way that no one else can.
So, find your tribe. Find another autism parent or group of parents. You will need them. Ask your child’s school if they can connect you. Ask your doctor if there any resources, like support groups, around. If nothing else, find a Facebook page and just read what other parent’s are doing. It helps you to not feel alone.
Follow our Facebook page. Send me a message. Sometimes, it takes me a few hours to get back to people, but I will. Just chatting can help you. I have several pages I follow and each one offers me something different. Whether it’s a mom who can be sarcastic like me, a mom of a non-verbal teenager, a mom with a son who is in a college program, a mom who shares memes and makes me laugh or a young man with autism who offers suggestions that might help Casey and Rob. I follow them and listen and learn.
Social media connections may not be the perfect support, but they are better than being alone and scared. Reach out. Let us be your group until you find one in person. Autism is hard. I’ve been living with it for almost 37 years and I still have days that I just want to cry because I’m tired and frustrated. Reach out. Don’t be alone.
If you want to read more about all of our years with autism, you will want to grab our book, Autism, Apples and Kool – Aid, available here. And our new book, about siblings, will be coming this summer! I’m so excited to write this with Mandy!