I knew my son probably had autism. He had most of the autism symptoms I had read about, but nothing prepared me for the autism spectrum disorder diagnosis. I never saw myself as a special needs mom. I didn’t know how to be a good autism advocate, but I knew I had to learn. This post explains our story the first year after the diagnosis.
My son’s autism diagnosis changed my life.
I knew something was wrong from the time he was two.
He wasn’t developing as my girls did.
Our pediatrician joked with me that we were “babying” him too much which was partially true. Maybe he wasn’t asking for things because we were just giving them to him?
We did tend to dote on him. Maybe the doctor was right.
I wanted the doctor to be right.
But deep down, I knew.
After multiple visits, I put my foot down and demanded a referral to Early Intervention, and I requested an official autism screen by a developmental pediatrician. The first available appointment was six months away.
This would be the first of many autism wait lists.
There is nothing more frustrating than knowing your child needs help and there’s nothing you can do but wait.
Since I’m not a sit around and see what happens kind of gal, I looked for services available to us in the meantime.
I began taking Nathan to speech therapy at our elementary school. The speech pathologist there was fantastic. She took the time to get to know my son, which was not easy considering he didn’t say a word. Somehow she discovered his love of all things dessert related and tried bribing him.
Didn’t work.
But instead of giving up, she got creative and asked me for pictures of our family and household items, which she laminated and made into flashcards. He did enjoy flipping through the pictures but never said a word.
Every time we left the school, the security guard would try to give Nathan a high 5, and every time it was returned with a blank stare.
My heart was breaking.
I took online quizzes and read a billion blog posts about autism warning signs.
I looked for resources anywhere and everywhere.
I stopped watching TV.
I quit talking to my friends.
I held out hope for some other diagnosis.
I dreaded autism like it was cancer.
While we were waiting for his official test, we ruled things out like hearing loss. Nathan passed his hearing test with flying colors.
That’s when I knew for certain Nathan was on the autism spectrum.
I went through a period where I questioned everything.
I felt sorry for everyone; Nathan, myself, my husband and my girls.
How was their life going to be now?
Autism changed everything – because I was letting it.
We stopped going out as a family.
We didn’t have a meeting and make an official decision to stay in-it just happened.
It started when our church told us that the nursery could no longer handle our son. That was devastating, but we understood.
He is a lot to handle.
My son stims – this is pretty common for kids with autism – it’s a coping mechanism people don’t understand.
Nathan never slept, so we weren’t resting, and our home was a wreck.
What happened to normal?
Where did my life go?
We went from family to frenzy.
My husband and I were waking up to Nathan raiding the kitchen at 3 am.
We never knew what we would find-bags of sugar coating the kitchen floor, or toilet water flooding the bathroom.
I felt like I was losing my mind.
Then something happened that changed my perspective, and turned me around.
I read a post on Facebook about a little boy, about my son’s age, who had been so brave throughout his struggle with cancer but lost his life.
The post was written by his mother, who explained how she would do anything to have her son in her arms one more time. Somehow she found the strength to blog about their battle with cancer; it was gut-wrenching. When her son lost his hair from the chemo, she shaved her head. When his diapers were literally radioactive because of the chemotherapy treatments, she suited up at the hospital and changed them herself. I’m telling you, this woman is a warrior mom if there ever was one.
In the end, she lost her son.
I still had mine.
She inspired me to rise and fight the depression that had taken over me.
Her words reminded me that I’m not a quitter.
I felt a tremendous amount of guilt for dreading an autism diagnosis like a cancer. Now I saw it as something to be grateful for. They say God will give you only what you can handle. I don’t think I could manage losing my son to cancer. I’ll take autism any day of the week.
We live an hour from a University that hosts a small preschool for kids with autism, down syndrome and hearing impairments.
Through the grace of God, I was able to get Nathan enrolled.
For over a year now I have been driving him to the school every day for 3 hours.
He gets one on one therapy with speech graduate assistants
Now I’m not going to lie and act like it was easy.
Getting adjusted to a classroom setting was difficult at first.
Nathan hates waiting.
With a passion.
The therapists suggested a weighted vest for him. She said the compression would be calming. I wasn’t happy about the loud colors I saw on the options online, but then I found this one that looks like any other hoodie.
Except it’s not! It’s a weighted vest in disguise! She was right. It calmed him down and helped him wait.
In Mississippi, Applied Behavior Analysis (ABA), which the gold-standard treatment for autism, is hard to find, and when you do find it, you’re going to be wait listed.
We are currently on two lists now both over 100 miles away.
I was able to find a therapist studying to be ABA certified, and she has worked with Nathan for over a year, 2-3 hours a week.
She has worked wonders with him.
When Nathan began the preschool, he had very little eye contact and no words.
No words.
He was “nonverbal.”
When he wanted something, he would find a way to climb to get it, even if that meant pulling a heavy chair across the house and climbing a dresser.
When he wanted something cold, he would throw a tantrum in front of the fridge.
We have had some throw-downs in front of that Kenmore, let me tell you.
The doctors told me I could get him to speak if I held what he wanted in front of him and repeated the word until he said it.
I tried this method with milk, juice, yogurt, and cheese.
It only worked with yogurt.
One day we had our own little Mexican standoff over juice for 10 minutes.
He cried.
I cried.
Nobody got juice, but I didn’t quit.
I wasn’t about to stop believing in him.
After a year of preschool, Nathan can verbally identify over 70 objects and is using two-word phrases. (Example-“More Juice,” “Want Yogurt”).
His eye contact is just as good as my teenager’s, if not better!
It’s remarkable!
I see a miracle in him every day.
I take him to our elementary school now when we get back from preschool, and he loves it!
His teacher is amazing.
Now when we see that security guard, he gives high 5’s and fist bumps like it’s his job.
Yesterday he told a stranger hi.
I almost wet my pants I was so excited.
We have come so far.
A year has passed and so much has changed.
Our family has adjusted, we have locked the kitchen cabinets, and we are getting some sleep, thanks to some prescription meds from Nathan’s physician.
We are a work in progress, but who isn’t?
Autism changed my life, and I am happy it did.
We still struggle.
We all have meltdowns.
Nothing is perfect, but throughout this process, I have seen the good in so many people around me, and I am grateful.
I am so thankful for the friends I have and the opportunities God has given me to help my son. I’m lucky to be surrounded by a fabulous Mom Squad made up of other Special Needs Moms, professionals, and caregivers.
I understand the blessing that is the power to communicate through words.
I used to take that for granted.
I am blessed with the opportunity to see the world through Nathan’s eyes.
I am blessed to be Nathan’s Mother.
If you are a parent or caregiver of a child with autism and you are looking for help-I know how you feel. It’s hard to find resources & it’s even harder to find someone to trust. You’re not alone. If there’s anything I can do to help-let me know! Email me or comment below.
More Information For Autism Parents
15 Autism Parenting Tips When You Are Paralyzed By Fear
Help Kids With Autism Focus & Calm Down With These 55 Heavy Work Activities
50 Sensory Diet Activities: What A Sensory Diet Can Do for Your Child with Autism
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50 Tools Every Autism Mom Should Have in Her Calm Down Kit
5 Ways Sensory Play Benefits Kids With Autism
26 Signs You May Be An Autism Mom
