Advice to Parents of Newly Diagnosed Children from a Veteran Autism Mom

“Put him in preschool and join a support group.”

Those nine words changed my life forever. We had spent all summer at doctor and therapy appointments trying to get to the bottom of what was going on with Reece. I knew deep down in my mother heart that Reece had autism. I had known for awhile.

But I didn’t know what to do, where to go, what should/could happen, nothing.

I remember those words like it was yesterday, even though, now, it’s been almost 12 years ago.

My first emotion was extreme determination to beat this thing. I was NOT going to roll over and let this, this, thing, whatever it was destroy my dreams for my perfect family.

And, boy, did I feel pressure to have the perfect family! Reece was suppose to be the one to carry on the family name. When you live on a farm, homesteaded by the original Donleys from the 1870s and it’s up to you to produce to the family heir, there is definitely PRESSURE!

As time went on and years have gone by, my mindset has completely changed. Life is hard, life is good, life is what it is.

So, here’s my advice to you:

First of all, it’s completely fine to go through all the stages of grief. And that may surprise you. I mean, it’s not like your kid has actually died, right? So why should you be going through all those grief stages?

Because, even though, your child hasn’t physically died, your dreams have definitely passed away.

From now on, your life will look completely different from what you envisioned and from what most other parents will have.

So, go through those stages. Be in denial, get angry, sob in the shower. It’s OK. I did all of that. You are not doing a disservice to your kid by hating the diagnosis and not being stoic about it! In fact, it may take you awhile to look at your child and not see autism.

When Reece was diagnosed, all of the sudden, instead of seeing my little John Deere loving farm boy, all I saw when I looked at him was autism.

Over time, that will fade and you’ll start to see your child again.

Second, start talking to your local school district and cultivate a relationship with them. They will be become your biggest allies in this fight to give your child the best possible life.

We live in a tiny town in southern Kansas in a very small school district. After Reece’s diagnosis (in August, right before school started), I enrolled him in preschool and started talking to the school about what was going on. We got assessments done and an IEP meeting scheduled. I got to know his teachers, paras, therapists, school psychologist and school principal. Yes, there have been times where I have had to fight for what I wanted done during his school day, but I tried to get my point across in a non-confrontational way and with a smile on my face. Because of that positive relationship, they have gone above and beyond for us and Reece.

Third, look into diet and supplements. We found a biomedical doctor in Kansas City who helped us pinpoint some of Reece’s physical issues that then manifest themselves behaviorally. It was stressful and time consuming, but by changing Reece’s diet and adding in some great vitamins and minerals, we were able to get a little closer to reaching our little blond boy.

Every child is different and their response to diet changes may be different, but, while the autism didn’t disappear, we made it possible for Reece to concentrate better and learn and to have fun with his family again.

Fourth, make sure you bond with your spouse and don’t leave out any other kids you may have. We have tried so hard to not let autism define our family life and marriage. Yes, it plays a big role and we often make decisions for the family based off of Reece (taking the family to an amusement park? Nope, not gonna happen. Family events? We drive separately so one of us can take Reece home early when he’s tapped out). My husband and I make our weekly date night at home a big priority (kids go to bed early, we order food and watch Netflix!) and we make sure our girls can be involved in other things outside the family (like 4-H).

Fifth, love your autistic child and never stop trying to reach them. Some days, it may seem totally hopeless. An autism journey is definitely a marathon. Little steps add up. You will never look at milestones the same way again. Don’t dwell on what the future may look like. Yes, you need to be prepared, but don’t torture yourself with what-ifs.

Trust me, I lived with self-imposed guilt for years. I was just sure I had caused Reece’s autism and had multiple pity parties dwelling on all of those what-ifs.

Sixth, on that note of being prepared, look into future adult services, and, when you need to, get on that waiting list. Luckily, our school psychologist was on top of things and pointed us in the right directions when the time came (when Reece was 12) to start that process. I had no idea where to begin. I also found another mom who has an older developmentally disabled son in our county. She was able to offer her opinion on what services to go with.

When Reece was diagnosed at 4, I was just positive that by 15 he would be “better”. I couldn’t imagine a future with an obviously “impaired” (for lack of a better word) child. I didn’t want to be that mom who was looked upon with pity. But, you know what? Now that I’m there and Reece isn’t “cured”, I’m good with it.

He has made HUGE strides over the last 12 years. I’m no longer resigned to our future. Instead, I’m optimistic and realistic about our future. My faith in my Lord Jesus Christ has sustained me throughout this whole journey and I know He has a plan for me and Reece.

Reece may always live at home and life may not look like what I dreamed about all those years ago, but I love my growing farm boy and can’t imagine my life without him!

Just remember…IT WILL BE OK!

Written by, Melinda Donley

Hi!  My name is Melinda Donley.  I blog over at https://thefarmchick.com/  I live on a farm in southern Kansas and have three kids- 15 year old fraternal twins, and a 12 year old girl.  My 15 year old son, Reece, was diagnosed with autism two weeks before his 4th birthday.  It’s been a long, interesting, and heart rending journey.

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