In yesterday’s post, veteran autism parents shared what they wished they knew when their child was first diagnosed with autism. We don’t have a time machine to go back and tell our new-autism-parent selves this stuff, but hopefully our autism advice can help other parents of children recently diagnosed with autism. Lisa Ackerman, founder of Talk About Curing Autism (TACA), wrote a an inspiring post a few years back titled “Dear Lisa” in which she writes a letter to her new-autism-parent self. It is one of my favorites – still relevant and inspiring to parents today. So, I am posting it here with Lisa’s permission. Huge thanks to Lisa for allowing me to share her hopeful message. And a little update a few years since this was originally written: Jeff is in college! Lisa’s feet are pretty cute now. She is still bad at math.
Dear Lisa of 1999,
It’s been one year since Jeff was diagnosed and you are still really frustrated. So far several doctors have told you to place Jeff in an institution. Jeff is only three years old. You know he has a ton of issues and is really sick, but an institution?! It feels like your world is crumbling around you. You are upset and can’t sleep because you are so very scared of the future.
So here I am, in the future, writing to tell you it will be ok. These particular specialists are wrong, they can’t predict Jeff’s future. They could not have got it more wrong!
In your fear, you have forgotten some of the advice mom and dad taught you. Please stay focused, and try to remember these things:
1) You cannot do it all at once. Remember two checklists: the long one that has everything you need to do on it and the short list with 1-3 things you can accomplish each week. PLEASE don’t look at the long list more than once a week – It will tease and taunt you. Keep that short list going and be realistic. That long list will slowly disappear. You will get a lot done. Trust me.
2) Surround yourself with positive people (and stay away from the Debbie Downers). You cannot change these folks. Focus on where you have the power to drive positive change.
3) The worthless emotions of fear and anger need to be banished as soon as possible. You have already wasted a year with these emotions. Stop it. Know that they still crop up but then squash them quickly with a positive attitude.
4) I like how you celebrated every victory (no matter how small). Continue to do that and smile as much as possible. Know that good days are around the corner.
5) Don’t be afraid to go ask questions – talk to a speaker at the conference, or a doctor whom you have just met. Bring Jeff’s medical binder and ask for guidance, direction and referrals. They don’t bite. They are there to help. Take advantage of that. Be sure to bring them a snack or something to drink as a thank you.
6) Don’t be afraid to travel to someone you think can help. Miracle Flights is a blessing and might even fly you there. You can make anything happen for Jeff.
7) If something doesn’t sound right or feel correct, it probably isn’t. Trust your instincts.
8) Stay consistent. Stay on target. Utilize the lab results and behavior data as your guide. Trust these measurements.
9) Biomedical intervention works. Often before things get better, they get a little bit worse. Don’t be afraid. Talk to other parents. Have clear guidelines and communication with your doctor. Read more about treatments so you can start those dialogues sooner.
10) Traditional therapies are a huge blessing. They work even better on healthy kids. Get Jeff healthy!
11) Don’t freak out if a therapist calls in sick. You are here and can try it yourself. Don’t be afraid to open the log book and try it out. That’s what parent training was for.
12) Treat therapists like family and (some) family like guests. Don’t bark at people trying to help you.
13) Your husband – please don’t forget you are married. Please remember why you fell in love in the first place.
14) Your daughter Lauren is the best kid and sister ever. Remember to go out on dates with her. It’s ok to have fun.
15) Be kind to yourself – even though you will never listen to this, please get a pedicure. Your feet scare me.
16) The more you give, the more you will receive.
You don’t know this but in June of 2011, Jeff finished 7th grade in a regular educational placement, not a special day class. He did really well. He didn’t make the honor role but that’s OK – he’s better than “average” grade wise. He has friends, a great sense of humor, some funny pick-up lines (they actually work!) and the most beautiful smile. His math skills are much better than yours. He has mastered a lot of goals. He will continue to make progress. He is a walking miracle.
And to the future – Let me tell you what he will do:
- He will graduate from high school.
- He will go to college.
- He will fall in love.
- He will get married.
- He will choose a career and love it.
Don’t shutter at this one – but he will produce some beautiful grandkids for you and they will share his beautiful smile.
With love & respect,
Lisa of June 2011
P.S. If only I could have written this note to you twelve years ago. I wish I could have. My goal this week is for families new to the autism journey to read it and feel a bit more empowered, less scared and ready for the journey. The journey of a thousand miles starts with one step. Walk towards the best practices and make good things happen for your kids.