Dear Friend,

Nine years ago my daughter, Hannah, was diagnosed with Autism. Our world shattered—I’ll bet yours is, too.

After her neurologist concurred with our pediatrician’s suspicions, the only thing that kept me from dropping to my knees was the need to immediately become as knowledgeable as possible about her condition to get her the help she needed.

Time after time, I would wake in the middle of the night only be reminded of the probable limits specialists had projected for Hannah’s future. Do you do the same? I yearned for a crystal ball that would reveal whether Hannah’s destiny had already been determined. Without a crystal ball to disclose Hannah’s future, I clung to the only thing that I could access: HOPE.

You, too, must have hope. You are your child’s best advocate, champion, and intervention strategist—no one knows your child better. The two of you interact every single day, so you see small shifts that others may miss. You have insight into what your child might one day be capable of, because of these intimate interactions. And you’re the one who can make things happen, setting appointments, meeting therapists, following through with doctors’ orders. When you hope for the best possible outcome, nothing can stop you from getting the best possible treatment.

But this is not a journey that you ever expected to navigate—an uncertain future of your child’s level of functioning and independence. You will be inundated with information. While it is important to become an expert on Autism to better understand and help your child, I warn of the danger of becoming obsessed with devouring every article, book, and video on Autism.

Remember that Autism is only part of your child, not all of who they are. Focus on what they can do, rather than always placing the focus on what they can’t do. Leave that to the therapists. Without regrets, therapy was a full-time job for Hannah.

Even though individuals diagnosed with Autism share a common set of behavioral characteristics, no two individuals will be alike. Become your child’s best detective by documenting everything about them that could be contributing to their current struggles and challenges. An example would be that Hannah would flap (self-stimulating behavior) because she didn’t have any language or way to communicate. Important questions may include: What senses are out of sync? What interests them when they are “in their own world”? What are the antecedents that trigger meltdowns? Some children exhibit challenging behaviors. Realize that these behaviors may be serving a real purpose, and take note of them to pass on to experts working with your child.

Right now you are probably feeling sad, guilty, and cheated. Your child is different and because of that, you, too, are different—changed. You simply cannot make sense of the diagnosis. This grief is an undeniable state; however, your child’s story has not yet been written. You are only in their first chapter. Do not waste valuable time mourning—invest that time in getting help for your child. Like me, you will most likely have to do them both at once. We do not choose grief, so we must find ways to process it; yet, find ways to do it that don’t slow you down from securing the right specialists and learning all you can.

As mothers, we can’t help but feel responsible in some way for this diagnosis; however, this was not something within our control and it is not our fault. No blame. It’s a lie that will only hold you back and tempt you to lose hope.

I know it’s hard, but when you find yourself comparing your child with others the same age, stop. Comparison is the thief of joy. And it, too, will hold you back. Instead, celebrate the small accomplishments your child makes in his or her own time, because each accomplishment will lead to much larger ones.

If I were to have a fight song or mantra for Autism, its theme would be to inform parents on the benefits of early intervention. Without a doubt, an intensive and structured early intervention program that focuses on communication, social, behavioral and educational aspects of your child is critical. When children are young, their brains are still developing; their neuropathways are still able to be shaped. The earlier these pathways are rewired, the easier it is to do so. Take advantage of as many interventions as possible. I say this because some therapies might not be advantageous for your child. For example, because of sensory challenges, Hannah almost failed to thrive. She needed to eat and would eat only a tiny selection of foods, so the gluten-free/casein-free diet experts recommended was not an option for us. You need to find what works and walk away from what doesn’t.

Day after day, I used to continue to ask myself, as you will, “Will Hannah ever catch up with others?” I am content to say that in some areas my daughter has, and in other areas she has not. At some point along our journey (she is now 11 years old), that daily thought ritual disappeared. I didn’t let the dream go, not entirely; it’s simply become less important to me. And that is healing.

You’ll find that your child will become more independent, because you will get them all of the therapies they need: speech, occupational, developmental, physical, aquatic, equine-assisted, feeding, and social/play. Your doctor may also suggest specialists such as an audiologist, neurologist, developmental pediatrician, and/or gastroenterologist.

Yes, this will take a Herculean effort at times that will leave you feeling overwhelmed; however, the pay-offs are worth it—especially when they mutter, “You are my angel’s wings.”

Have hope, my friend. You can do this.

Take care,

Lori