What it feels like to have a child diagnosed with autism

What it feels like to have a child diagnosed with autism

When my son was diagnosed with autism at 3 years old, it felt like someone had died. The mourning for him, for our family, and for the life I had imagined for him was so deep and profound, it left me breathless. For months.

He was a quiet baby, more likely to sit in the highchair and amuse himself than his chatterbox older sister had been. But I didn't see any specific signs or issues at that time –believe me, I have wracked my brain endlessly to see if I missed something.

When our son was 13 months old, he said his first word. Actually, it was two words: "All done." We were excited; he was right on target for that phase of his development. (As a teacher with a master's degree in educating preschoolers with disabilities, I'm especially in tune with developmental milestones.)

But at 16 months, he had not really expanded his vocabulary. So at that point, I contacted Maryland's Infants and Toddlers Program (MITP), and by 18 months he was getting speech help. We were trying to practice early intervention, but still, no one was saying or even thinking autism.

Fast-forward a year later, and things just weren't progressing the way we thought they should. By that time, our son had gone from seeing a speech therapist to having a special-education teacher. She evaluated him according to an autism checklist, and he fell into the low- to no-risk category.

But there were odd things happening. He was pulling out his hair and eating it. He was playing in his diaper. My instincts were screaming, so we decided to make an appointment with a developmental pediatrician at Johns Hopkins. At that appointment, we were given the diagnosis: autism.

For the sake of my husband and our other kids, I tried to play it cool. But inside I was a wreck. I stopped talking to my friends. I stopped going out. Our family went through a time when we really just needed to be together and mourn the loss of the life we thought we were going to have. Autism isn't an easy diagnosis. We didn't know if our son would ever be able to live by himself, or if he would ever even be able to say, "Mom." Everything seemed scary and overwhelming.

Then, one morning, I was struck by a realization that shifted my perspective: Nothing had changed. Just because we were given the label of "autism," it didn't really mean anything. My son was still the same; and he was making progress. Our family was still the same, too. The dynamics hadn't changed one little bit, and our plans and dreams didn't have to change, either. I decided to embrace the word autism and use it.

I read somewhere that if you claim something, you take the negatives away and are left with the power. We claimed autism. We say it with pride. We let our son, and everyone else, know that he is different, that his brain works differently. But that doesn't make him less.

My son is now 7 years old, and I wouldn't change a thing about him. Nothing. If we were to take away autism, we might take away some of the things that we love most about him. My husband said it best: "Everyone is going to have challenges … we just know what his are, and earlier than most people know."

If you are dealing with a diagnosis like this, what I would say to you is, breathe. Allow yourself to mourn, but then realize nothing has really changed. Your child is still your precious baby, and tomorrow is another, better, day.

Opinions expressed by parent contributors are their own.

Watch the video: Συμβουλές για καλύτερη επικοινωνία με τα παιδιά (January 2022).

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