7 things I wish I had known when my daughter was diagnosed

Birthdays and anniversaries always make me nostalgic, particularly now that I am a little older.

My oldest child recently turned 16 and I spent some time thinking about how far we have all come in her lifetime.

I thought about when she was first diagnosed with autism. My mother had died only a couple of months before, I had a new baby and now my beloved oldest was autistic.

I deal with stress by clenching my jaw and grinding my teeth in my sleep – life was so stressful at that time that I couldn’t even open my mouth to eat a sandwich because my muscles were so tightly clenched.

I am happy to say that things got better. But at the time I couldn’t wrap my head around what was happening.

I really wish I could write a letter to my younger self, but since I can’t I thought I would share my reflections on being a mother here. Some of these recommendations are specific to parenting an autistic child, and some are not.

What do I wish I had known 10 years ago

  • Take time for myself

If I suffer, then everyone suffers. Don’t feel guilty about taking some time to recharge. It might be a nap or a trip to the bookstore or just a long shower. Make it a priority and schedule time for myself every week.

  • Dad is not a babysitter

Dad is a partner and should be treated as one. He is capable of caring for children every bit as much as you are. The more he is treated as an equal the more he is going to be able to do. This includes chores around the house, taking turns with appointments and everything else that goes into raising a family. Everyone will benefit from a closer relationship, the kids, Dad and Mom.

  • Find a middle ground

Parenting a special needs child means dealing with schools, doctors, therapists, well-meaning neighbors and family who all think they know better than you how to help your child. Sometimes as a parent we are completely lost and looking for some guidance, but sometimes we aren’t. Choose your battles and let the rest go. You won’t win them all, but keeping your focus on helping your child will allow you to choose which ones you are going to fight.

  • Don’t Google it

I can’t tell you how many parents I have heard from that search for information online and come away discouraged, disturbed or even terrified. Remember that just because it is on the internet doesn’t make it true and it doesn’t make it accurate. You did NOT cause your child’s autism by having a C-section, breathing polluted air or getting them circumcised. Even if a cause is eventually determined, how is that going to help your child? It isn’t. Focus on helping her learn the skills she needs to live in the world.

  • Progress is uneven

Some days are going to be hard, particularly in the beginning when you are all learning. But there will be hard days later too. Just when you think she is making some great progress old behaviors will surface or changes in life will cause her to melt down. Don’t give up. For us it felt like a stairway – 3 steps ahead, then 2 steps back and getting stuck on that stair for awhile, then 5 steps forward. Repeat over and over again. Progress is made, but it is not a straight line so don’t expect it.

  • Your opinion matters more than any doctor, school official or specialist

Sometimes you are going to disagree with recommendation from the school or a doctor or a therapists or someone else who helps provide care for your child. If possible, take some time to consider the options, then go with your feeling. You know your child better than anyone else and no matter what kind of degree or experience they have, this is your child. If you choose a treatment that doesn’t work, then stop and rethink it. There is no silver bullet here and you will have to try a lot of things to figure out what works for your child.

  • Autism is for life – and that is not only okay it is fantastic

Autism is a scary word for a lot of people, but it doesn’t have to be. I have learned that my daughter has a very unique perspective on life and the world. She understands society expectations in a way that I never could, because she has had to study them in order to fit in better with her peers. This has also allowed her to choose the ‘society norms’ that she wants to embrace and ignore the others. She is in high school and doesn’t seem to have any issues with peer pressure, self-image or self-confidence. She knows who she is and likes herself – anyone who doesn’t is kindly invited to go away. (If only I could bottle this attitude, I think I could make millions selling it to teens.)

Closing Thoughts

I have realized that autism in children is not the same as autism in teens and adults. When she was 6 I could never have envisioned all of the things she can do now. She has a part time job and is working on getting a driver’s license. She is planning on attending college. She has friends.

People change and grow throughout their lives. My daughter may not have the emotional maturity of teens her age, or the life skills to be independent at 18, but she will get there.

We will continue to help and support her until she can live the life she wants. There is no telling what the future holds, but I am sure that we will work to do the best we can.