A Letter to the Mom Who’s Child Has a New Autism Diagnosis: Here’s What I Wish Someone Would’ve Told Me

Dear Mom of a Child With a New Autism Diagnosis,

I’m so sorry for the new autism diagnosis and that you have this life path put upon you. It’s hard, can be scary, painful and full of worry. You will have to become thick-skinned, and much sooner than you might think. You will receive some stares from the public, some may even criticize to your face, and it feels like everyone thinks they are in the know and will offer advice about what therapies you need to do and more. Ignore almost all of it. I’ve received so much unsolicited advice, I could write a book.

I’m not talking about all advice. You will have some well-intentioned, loving friends who want the best for you and are offering what help they can. Be honest and open about where your heart is at that moment. Tell friends if you don’t want suggestions at that time. True friends will respect and love you no matter what. You need to be real with people. Don’t hide. You will drown in your circumstances if you do. Some friends and family might distance themselves. My husband has some family that just don’t understand. Many people’s first advice is to let it go, but I think that invalidates and ignores your feelings. It hurts, and it will make you angry. Own up to that, and don’t feel guilty for those feelings. Tell those people, with respect, how you feel if you think that will help. Don’t expect anything to change. It may not, but at least you were honest and did all you can. But don’t feel bad if you choose not to speak your heart. I didn’t do it either. Not everybody is built the same. And in the end, you will have to let it go, but don’t ignore and deny your feelings first. You are a human, and stuffing hurts can hurt emotionally and physically.

When your child has a new autism diagnosis, focus on your child.

Also, don’t worry about using the “correct” terminology. Don’t feel forced to say neuro-typical if you don’t want to  We all know what that stands for … ‘normal’. I know people may get their feathers all ruffled up about the “normal” word, stating that “nobody is normal” blah blah blah. While that is true, there is no absolute normal, there seems to be a general unwritten understanding of what qualifies as normal. We don’t feel normal, and our kids aren’t normal. Hence why there is a regular classroom and a special needs one. I think that says it right there. “Neuro-typical” and “normal” mean the same thing to an autistic child … something they are not. So don’t worry about what term to use. Focus on making your child feel loved, special, valuable and important.

Your doctor bills might be high, for a long time. You might learn more medicine names, medical terminology and so much information you might as well be given an honorary doctorate in child psychology. You may have to deal with hyperactivity; Lord knows I have to. You may have to deal with seizures, food allergies, texture aversions, sound and light aversions, random uncaused tantrums. You may, after a while, no longer be able to take your child out anywhere. Restaurants might be tough. Schools might be stressful. IEPs send me home crying each yearly meeting. You will learn all the acronyms and terms: IEP, DLC, LRC, EGC, fully inclosed, neuro-typical, DD services, PT, OT, speech therapy and ABA. Insurance companies can suck. You might have a slew of doctors: psychologists, psychiatrists, neurologists, dentists that work on autistic children, doctors that deal with bone and muscular issues, allergists, physical therapists, occupational therapists, speech therapists and more. You might not have much money left … know you are not alone.

Sadly, your child may wander. This is scary, and I found it hurts a little because it’s hard to not feel like he wants to run away from you … his mom. You might find you know the police officers by name as they help find your son each time he runs off. I pray they are as understanding for you as they were for me. You son isn’t running because he doesn’t love you and wants away. He is running because he may be bored, curious or just wanting to explore. They don’t understand the danger or how much and why it scares you. You will have to make your house like a fortress. Making the windows only be able to open four to six inches, special locks on the doors that require a code to open, or double-sided dead bolts that use a key. You may have to check on your fridge often to prevent food from spoiling because your child left the door open in the middle of the night. You might need a fridge lock because they might get into certain food and make themselves sick or get it all over the house.

When your child has a new autism diagnosis, get support.

Get a disability case worker through the county. They can help you get resources you need that you thought weren’t there. They aren’t miracle workers, but they can really help.

The special needs school program is very helpful and crucial for your child to thrive. They are trained to know how to help your child. But, don’t be afraid to speak up for your child. You are his mom and have a very important perspective and valuable input. Even in the most amazing school situations, you will have moments of disagreement. You and the school love your child, and both want the best for them, but sometimes the ideas of what that is are different. Don’t be afraid to speak up. Each year you have an IEP meeting. This is where you discuss with the teachers and support staff about your child’s development: where they are and goals to reach where they need to be and how to do them. It’s hard not to come away from them with tears, as there is a lot of focus on deficits. It stings, even after seven years of them.

You so badly want your child to be normal, to snap out of it, to connect with you. … You’d do anything to hear the phrases from your child that moms with normal children complain about. You will get jealous. And grieve. You get jealous of the vacations and trips to Disneyland that you can’t take because not only can you probably not be able to afford them, but the plane ride might be impossible, or the fear of them getting lost as almost a guaranteed keeps you from even thinking about it. You don’t get the playdates like other parents. It’s too hard to bring your child to someone else’s home. Your child may be bullied or abused by children at school. They may be mocked. Know that even though your child may seem to not notice, they do, and it deflates them. Don’t be afraid to stand up for them. You have a lot of support from parents of autistic and non-autistic children backing you.

Sarah Adams
Sarah Adams
Sarah Adams is a professional soprano opera singer who traded the stage for a principal role in domestic life and is now stay-at-home mom to her three kids, the oldest of whom has autism. Sarah blogs at The Stay at Home Soprano about what life looks like for a family dealing with autism, her life as a stay-at-home mom, how she still remains connected to her opera roots, and just plain crazy life in general. You can also follow her at her Facebook page.

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