In remembrance of D-day (diagnosis day) four years ago, today I put together a letter I'd send myself that day.
There are so many things I want you to know about today, about your life, about your son. I know right now you're confused, you're hurt, and you have no idea what you're doing. I know you're afraid of what will be, how your family will handle it, how YOU will handle it, and most of all, how your son will deal with having a disability.
1. Things will get better. I promise.
Right now, you're dealing with hours-long meltdowns and head-banging. You're doing your best to protect your daughter (and yourself) from JT's seemingly random attacks. You're terrified of what will happen when he's bigger, stronger, faster than you. Please know that this, too, shall pass. When he's bigger, stronger and faster you won't have to worry about this stuff.
2. Don't believe everything they just told you.
You know how they just told you that your son would never talk? How he is likely severely cognitively impaired, and you would need an IQ test to verify around 7-8 years of age? They are WRONG. Your son will talk. He will learn the Kindergarten curriculum before he even starts Kindergarten. He will astound you and everyone who works with him.
3. You'll figure this out.
There are reasons for his outbursts. You will find ways around them, ways to minimize them, and then ways to teach him better alternatives to losing it. He will still lose his temper, but in a less aggressive way. Have faith and keep looking for those reasons.
4. Take the help.
You are stubborn, but when someone offers to help you, take it. The end.
5. You will find family.
Not just friends, but a true family. You won't know each other conventionally - face to face isn't possible when you're scattered across the globe. But there will be more love and caring in these friendships than you can imagine. Lean on them when you need it, and give back. You will need them throughout this journey.
6. Laugh. A lot.
You have to have a sense of humor when you parent a child with autism. At first, you're so wrapped up in the sadness to laugh, and that's understandable. But shake it off and see some humor in your everyday life.
7. Take care of yourself.
You need to make sure you are both mentally and physically healthy. It's not easy (for what it's worth, it's four years later and it's still a major struggle). You need to be here for a long time - to see your kids grow up and to grow old with your husband.
8. Don't believe the statistics.
Or at least don't let them scare you. They say 80% or more of autism families end in divorce. Yours won't be one of them. You have an awesome husband, and this will actually bring you much closer. You're lucky.
9. Audrey will be fine.
She is happy. She is healthy. And she loves her brother more than anything in the world. It is her blind hope and faith in her brother and his capabilities that will end up showing you how much he can really do. So let her take the lead. Let her drive him crazy sometimes. Trust me, it helps.
10. Let go of the guilt.
Again, a tough one that is still a work in progress. Whatever the cause, there's no way you could have known, and no way for you to have prevented it. You can only help your son as much as you can. You can't move forward when you're always looking behind you.
Four-years-ago-me, you will have good days and bad days. You will find an inner strength you had no idea you had. You will learn (quickly!) to stop caring so much about what others think, and start caring about what YOU think. You will find out you are, indeed, capable of handling controversy - and you will find you are excellent at getting what you want (surprising, right?!). You will be blessed with some amazing professionals (who you will consider friends later) who will change yours and JT's lives forever. You will find that there are far more 'good' than 'bad' people, more that care than don't.
So take a deep breath, and get to work. You have so much to look forward to.