What I’d Go Back and Tell Myself The Day My Son Was Diagnosed


This is a note written to my past self on the day my son, E, was diagnosed.

Faith, just listen.

Remember that first time your husband spun you around to change things up? Hold onto that…

It is OK to feel relief in having a prescription indicating your child has autism, or PDD-NOS! Now you can get the services everyone has denied your baby for six months. It’s OK that you feel only relief; tears don’t prove anything. Your tears were spent fighting, and that’s OK, too.

Don’t dwell on the anger or the feeble attempts of others to deny your sweet boy access to any services; it cannot help you. They didn’t do it to hurt him or you. They did it because few people know about or understand regressive autism. Few people have seen it first-hand.

Do get that second opinion because you need it and it will lead you to the best team E could possibly have and you will finally feel some peace. Do continue to be your proactive self — it will get you everything E needs. The specialists will want to be your son’s doctors, and you won’t understand it, I still don’t, but you will feel eternal gratitude.

Do get organized, but don’t allow yourself to feel so overwhelmed and terrified about timing. You will get E every service he needs in good time, regardless of your sense of urgency and panic.

Breathe — life will continue. You need to remember yourself, and you need to practice healing breath daily. It will save you a whole lot of anxiety.

Do not dwell on labels: PDD-NOS, autism, levels, DSM 5, SPD, ADHD… you will know so much more regardless of how little you sleep. Do read scientific data, but do also check the source. Don’t feel like you must read every single success and horror story relating to regression! Don’t think cure; think growth and believe in E.

Find your people — start that page, be open to those around you. You will find the most brilliantly supportive friends from all over the world and you will be incredibly grateful for having them by your side every single day. They’ll always there when you need them. You also have the support of loving family members; they will stand by you however they can as well. Do not be upset by distance.

Try not to go crazy with worry for further regression with every illness, with every tantrum. Try not to dwell on the timing of his regressions, for you are not to blame.

Stop blaming yourself! JUST STOP. It is foolishly unproductive and science has not discovered an official why yet, so blame helps nobody.

Your other two children will manage with less of you, and you will find more of yourself to give. They will learn compassion, understanding and acceptance long before their friends. They will love your son so much and they will want to help him. They will sometimes take tremendous pride when they learn they are helping him or making life easier for you. They will love and respect you differently.

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You will continue to adore this sweet boy regardless of labels and he will thrive with your love and attention. The pace will be wholly unlike his siblings, but it will be growth. You will focus on what you can control, because living in fear of regression is no way to enjoy life for any of your three children.

Although one of the only things the diagnosing doctor managed to warn you of was that there is a huge divorce rate in the autism community, don’t even harbor a moment of worry. Your relationship will only grow stronger as you work as a team to do everything you can for all three of your amazing children.

It will not be easy, but the love you feel for these three amazing kids will make it so extraordinarily humorous, so beautiful, and believe it or not right now, so much fun. You will wonder if other families laugh so much.

We will find new measures and new depths of joy because it feels right. We will keep spinning!

A longer version of this post originally appeared on Rantings of an ADHD Mom 2 3.

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