Our Journey with Autism – Q & A

When David was 3 years old he was diagnosed with Autism Spectrum Disorder and our journey as a special needs family began.

Over the last 4 years we’ve been through so much and I like to think we’ve grown and learned as a family about what it means to have a child on the spectrum. David is high functioning and also experiences Sensory issues so it’s been a bit of a challenge to say the least.

Now, I don’t consider myself an expert but the truth is when you have a child with any special need you immerse yourself in it until you learn everything you can. My husband and I have made it a point to read every article, talk to every doctor, make friends with other Autism families and just become as to close to experts as possible.

We’ve had a lot of questions and concerns from so many that I wanted to share it all in one place to hopefully help others going through a similar situation.

Autism Journey - Simply Bessy

How was David diagnosed?

When David was 2 years old our pediatrician expressed concern about his speech development. My husband and I were in a bit of denial and wanted to wait until he was 2.5 to see if he ever started talking. He didn’t. We immediately snapped out of denial and went into full mama and papa bear mode attacking the problem at hand. Our pediatrician directed us to a speech therapist and and an occupational therapist for evaluations. Upon evaluating David, the therapists told us he was about 1-2 years behind developmentally and was more than likely on the spectrum with sensory issues.

The official diagnosis came a few months later when we met with a neurologist who gave it us in black and white.

Did David show any signs other than delayed speech?

Yes, David lined up his toys, was overly obsessive with tubes and strange items, was super sensitive to noises and sounds and didn’t like being touched. He also preferred to be alone, made little to no eye contact, and flapped his arms and hands constantly.

He’s diagnosed, now what?

Our first step was reaching out to Early Steps, a program in our state for children birth to 36 months with special needs. They helped us with placing him in the public school system for the Pre-K Sped ProgramΒ in our county. This is a free program for eligible children and it was a blessing. Being able to put him in a school environment with qualified teachers was very important and we are so thankful he was able to attend.

Financially we couldn’t afford therapies outside of the school but David was able to receive speech, occupational and physical therapy through the school and it was one less thing to worry about.

How did it feel being told your child has a disorder?

It hurt tremendously. No one wants to have children that have any kind of issues, health or otherwise. I have an education background so I knew deep down there was something wrong but it still hurt me to hear those words, “He has Autism.” I remember holding it together while in the room with the doctor but as soon as we got to the car I started crying uncontrollably. It felt like my insides were ripped from me and my world was falling apart because now my son had a disorder, a brain disorder that I could not fix.

What changes did you have to make to accommodate David?

We really needed to work on the way we talked to him and change our expectations. David wasn’t going to meet developmental milestones at the same time as his peers and that was something we needed to live with. I still struggle with this and he’s almost 7! As far as our daily lives, we live normally and take him everywhere. Yes, he can get overwhelmed and overstimulated some times but we are not letting a diagnosis define our family or letting it stop us from enjoying our lives.

However, we do accommodate David when it’s necessary. When he has a sensory overload or a complete meltdown we’ve had to remove him from restaurants, stores and other public spaces. David is also extremely sensitive and doesn’t understand lots of social situations so we have to be aware of where we are, who we are with and get ready to remove him if he is overwhelmed.

David doesn’t look “autistic” are you sure he was diagnosed properly?

We get questions like this one all the time! What does Autism even really look like? Every person on the spectrum looks different just like you and me. This response or comment always gets to me because people want to cast doubt and it bugs me. Believe me when I say I don’t wish a disorder on anyone and I’d never want to label my child unless he actually had something. So yes, he has Autism and will always have it. It’s not something he will “outgrow” or “get over” he has it for life and we will support him always. We trust the doctors and specialists that have treated him and diagnosed him 100%.

How does David’s Autism affect your other son?

We have another son, Jacob who is about 2 years younger than David. When we were going through the diagnosis processes we were worried that maybe it would be too much for Jacob or that maybe it would be something both our boys have. Thankfully, Jacob is not on the spectrum and we believe he actually helps his brother. David learned to play with another child because of Jacob and also practiced words through playing with his brother. It really is a gift to see how much David has learned from his little brother and it brings us so much joy.

Recently Jacob has started asking why his brother gets some special treatment or why we may go out of our way for David sometimes and we have now explained everything to him. Simply put, we told Jacob “David has Autism and that mans his brain works a little different than yours.”

What improvements has David made since he was diagnosed?

So many!! David started out not talking and now he doesn’t stop! He used to hate being touched and never looked at people or said hi, and now he’s the friendliest person in the room. He loves to give hugs and is just the sweetest little boy. If we hadn’t acted as quickly as we did I don’t think he’d be where he is today.

David is also succeeding in school. He loves his teachers, reading, writing, working on the computer and is so smart! We couldn’t be prouder of him and are so happy with his progress.

What school does David go to? What therapies does he get?

David attends public school and he’s finishing up 1st grade soon. He is in a special needs program for children with Autism with a certified Special Needs teacher and a paraprofessional at all times. He’s part of a small program, in the class they have 10 students total and all are on the spectrum.Β We are so happy with the school and plan to keep him there as long as he needs it but our main goal is to get him into the general education classroom setting eventually.

As for therapies, he gets speech, occupational and physical therapy as needed at the school by specialists.

What do you say to a parent who thinks their child may be on the spectrum?

TRUST YOUR GUT and listen to the doctors. You know your child better than anyone and if you have an inkling that something could be off, jump on it and get them checked out. Don’t be afraid to be the annoying parent because your child comes first. Also, ask lots of questions and demand answers from doctors. Don’t just take what they say and run with it, do your own research but find yourself a doctor you can trust and rely on. Be open-minded and no matter what, know you are doing the best for your child.

What is the biggest thing you’ve learned about Autism?

I didn’t know every little quirk or behavior has a technical term. David repeats words or phrases on loop, kind of like a broken record and that is called echolalia. He also tends to get obsessed with a specific item or character without being able to shift gears and that is called perseverate. The world of Autism is so broad and there’s so much information to soak up, I love learning more and more every day.

For more information on these and other terms go here!

Something else I’ve realized is Autism is a spectrum disorder, meaning no two people diagnosed will be the same. Not everyone realizes this! David may have similar signs as another child on the spectrum but they won’t be alike. I still like to chat with other parents of kids with Autism to discuss how our kids do some of the same things and share tips on how to deal.

Do you ever wish David didn’t have Autism?

Yes. I can lie and say and no but I’d rather keep it real. David having autism isn’t ideal and if I had a choice I’d take it away from him in a heartbeat.Β Sometimes I even wish I could change the world around him to make it so he “fits in” better just so he doesn’t struggle to understand his surroundings so much.

I wouldn’t ever want to change David and what makes him special but if I could make life easier for him I definitely would.

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“Cherish the children marching to the beat of their own music. They play the most beautiful heart songs.” -Fiona Goldsworthy

David is the sweetest, most loving boy who just happens to have Autism. He is so much more than his diagnosis and we love him to pieces. Our journey with this disorder has taken us on highs and lows and it’s a challenge daily but I wouldn’t have it any other way. David pushes my husband and I to be better parents and is teaching his younger brother many life lessons.

Let me remind you we are average people doing the best we can. We are nowhere near perfect and don’t pretend to be. I make mistakes everyday with David because it’s hard and frustrating having a child that doesn’t see the world others do but we try and we make it work. Thankfully we also have a big support system with our family and that makes a world of difference.

I hope by reading some of our story you will know and understand us a little bit better. Maybe you have a friend struggling with their child on the spectrum or maybe you are having a hard time dealing with getting your child diagnosed, whatever it is, I hope this helped you in some way.

Autism Resources

https://www.autismspeaks.org/

http://www.autism-society.org/what-is/

https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

http://www.nationalautismcenter.org/

https://www.myautism.org/

April 2nd is World Autism Awareness Day! Go to Autism Speaks for some ways to help raise awareness and Light it Up Blue for AUTISM!

XO,

Bessy

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