Frequently Asked Questions About Autism

When my son was first diagnosed with autism I had a million and one questions. I thought that getting his diagnosis would be the hardest thing we would ever had to go through. I believed once we got that we would immediately get services in place and start to help Cooper. I thought it would all be uphill from there. I was wrong. We left the appointment and that was that. It was up to me as his mom to find the ‘right’ services for him, find the right doctors, therapists, and teachers, and research everything medical.

I wasn’t prepared for the confusion or how it felt like I could never ‘get a handle’ on his disability. Throughout it all I just wanted someone to guide me along. It never came though. So, I will share with you the knowledge that I have!

Here are the 14 most common questions I am asked every single day about raising my son with autism and apraxia:

1.) When was Cooper diagnosed with autism?

Cooper was diagnosed with autism when he was three years old. If I was to put it technically I would say he has severe, nonverbal autism. I know some people hate labels. I understand. But to us those labels matter. It helps us tell Cooper’s village and the outside world about him.  People always ask me if I knew he was autistic? Or, was it a surprise? I knew that something was going on with Cooper when he was just a baby. He didn’t sleep. He wasn’t content. He didn’t play. He wasn’t curious. And at the same time he waved, smiled, and pointed. He also struggled with chronic ear infections and was misdiagnosed with a moderate hearing loss in both ears. The beginning was very hard friends. Read my Letter To The Parent of a Newly Diagnosed Child. This is one of my favorite posts. It was what I needed to hear when my son was diagnosed.

2.) What device does Cooper use?

Cooper uses the Amazon Fire HD 8 Kids Edition Tablet. You can get very good deals on them through Amazon and they are durable. The warranty is also amazing. For $15 they will replace the device twice…no questions asked. When Cooper was younger we started him with an iPad. I personally like them better and find them faster and easier to use. Unfortunately, after three being destroyed I couldn’t take the price tag anymore. Over the past five years, Cooper has went through 3 iPad’s and 6 Kindles. I refer to our house as the technology graveyard. My only complaint about the Kindle Fire are the ads on the home screen. You can pay a fee though to have them removed. His favorite apps are Netflix, Amazon Prime, PBS Kids, Nick Jr and Disney.

3.) How much screen time does your son have a day?

This is an excellent question. I want to start by saying that every logical human knows that too much screen time is bad. We all know that. Now in saying that my son needs constant stimulation. In a weird way it calms him. He loves the control of having a Kindle and choosing what he wants to watch. Right now Cooper watches his Kindle for 2-4 hours a day. Before you scold me I know this is too much. Let me just say that my son has no hobbies or imaginative play. He doesn’t play games or entertain himself. Without his device he gets incredibly anxious. Lessening his screen time is definitely a goal of mine but not a priority at this time. When I do start working on it I am going to use a timer. Cooper is a visual kid. We will start with 5 minute chunks.

4.) How has having a child with autism affected your marriage?

This question. Sigh. I receive it every single day. My relationship with my spouse is rock solid today but we went through some serious ups and downs to get here. I also openly admit that for years I blamed the breakdown of my marriage on Autism. The sheer stress of it. The weight of it. The chaos that surrounded us the instant we received the diagnosis. Autism has its own force. I often refer to it as a tornado. In order to help our son we had to give up complete control of our lives and follow its path. At times it was all too much. It was more than two people could handle. I was wrong though. Autism didn’t cause our divorce. The heartbreak of it did. And the different way that two people perceived grief.

5.) Is Cooper in public education?

Cooper is six years old and ‘should’ be in first grade at our local elementary school. He is not though. We made the decision to quit public education when Cooper was midway through his kindergarten year. It was a VERY emotional decision. I want to emphasize that. I knew in my mommy gut that Cooper wasn’t getting what he needed yet leaving the common path was difficult. Saying goodbye to school plays, grade levels, sports, etc., made me sad. If you are questioning whether your child should be in public education I feel for you. I am sure you feel helpless, confused and not sure where to turn. I did. I knew that every morning my son was refusing to go. I felt like sending him was warranting terrible results. I also felt that he needed to learn ‘how to learn’ before he could actually get anything form school. I suggest you research all the options you can. And ultimately, trust your gut. You know your child best. Learn all about my decision to quit public education HERE.

6.) What therapies is he currently receiving?

Cooper currently receives 40 hours of center based ABA Therapy a week. At the center he also receives Speech Therapy and Occupational Therapy. Making the switch to ABA is the best decision we ever made regarding Cooper’s care. Click HERE to watch my ABA testimonial.

7.) What communication device does Cooper use?

Cooper has been using a Communication Device since he was 5 years old. At first I was very nervous about getting him a talking device even though he is completely nonverbal. I thought it would limit what little communication he had. I was wrong. It has been absolutely wonderful. Cooper’s actual device is a very durable, heavy iPad with Proloquo2Go. We purchased the device through Talk To Me Technologies. You can learn all about our speech device HERE.

8.) Is Cooper potty trained?

I am doing a happy dance around my living room as I type this…YES, Cooper is potty trained. If you follow my blog you know that potty training him was my ultimate goal and as his mama, I didn’t know if it would ever happened. I could vividly see a world where I was changing a teenager’s diapers. In August of this year I spent three weeks in my bathroom potty training Cooper. In all of my 34 years it is the hardest thing I have every done. (Need diaper options for a larger child? Click HERE to see options.)

https://youtu.be/HiS01CAegHw

9.) Does Cooper sleep through the night?

Yes, he does. Cooper did not sleep through the night until he was five years old. His sleep struggles started at birth. As a newborn, Cooper slept 6-8 hours in a 24 hour period. Between ages 2 and 3 he woke up on average 10 times a night. Let’s just say this mama was losing her mind. And we tried everything. We tried white noise, pink noise, black out curtains, humidifier, dehumidifier, music, nightlights (all colors), essential oils, keeping him up later, removing naps, melatonin, etc. I could probably write a book about tackling sleep struggles in children with autism. Want to know what I learned? Sleep deprivation is torture. And, I think sleep struggles are strong correlated with pain and discomfort. When Cooper turned five and we eliminated his ear pain, he started sleeping through the night, but work up at 3:30 am every single day, Monday thru Friday, month after month. I have PTSD over 3:30 am wakeups. Around age six we met with a Naturopath for constipation issues. We cleaned up Cooper’s diet. We added in supplements to his diet and removed dairy and gluten. After two weeks he began sleeping 9 pm to 7 am. It was the BEST decision we ever made.

10.) Does Cooper take any supplements? Is he on any other medications?

Cooper takes many supplements a day. Watch the video below to learn all about them. It’s way too much to explain and this video will definitely help you. Click HERE for a list of the supplements.

11.) Does your son receive any benefits?

The number one question I receive as an Autism mom is what benefits do I get for my son and how did I obtain them. Cooper receives Medical Assistance through the state. This is also known as Medicaid. I will gladly tell you what I know about the program. He also receives a few other services but I will save those for a different post. First, you need to find out what your state offers for benefits. Please understand that every state is different. Here is the link to the Federal Medical Assistance (Medicaid) Benefits Guide: https://www.benefits.gov/benefits/browse-by-category/category/21. Look at your state specifically to see income requirements.

Also, my son is covered under private health insurance through my employer and has secondary Medical Assistance. We did this because Cooper’s medical care totaled well over $200,000 last year. Medical Assistance pays for the things that my private health insurance does not. Medical Assistance also pays 100% of Cooper’s co-pays and deductibles. Fun fact: We reach the family max of pocket deductible for our health insurance by January 3rd. Cooper’s services are that expensive. Learn how I started the Medicaid process HERE.

12.) How do you handle all the emotions that go into special needs parenting?

Day by day friends. And a whole lot of laughter. It’s as simple as that.

13.) How did your following get so big?

I started blogging when Cooper was first diagnosed. I had so many emotions and fears and no one to talk to about them. I didn’t know where to turn. So, I started writing. I think at the time I had 5 followers. Then in January of 2017 I started a Facebook page for my site. In 10 months I have grown to 55,000 followers. It’s been a whirlwind. So, how did I get here? Well, I think there are a few factors. I feel like very few bloggers are willing to talk about the lows and struggles that go into raising a special needs child. I think people relate to me because I am honest. And I believe in starting a conversation about autism and not hiding it. The second factor is I had two videos go viral. The first one is called, ‘The Last Time We Believe This Is Going To Be Okay.’ To this day it is still my favorite of all of my videos. It is the one and only time I have ever cried on the internet. And I have never been more honest about how hard autism can be. The second time was after a family verbally assaulted Cooper and I at a special needs park.

14.) What are your hopes for Cooper’s future?

My hopes are simple. I want Cooper to be happy and healthy. I want him to be anxiety free and to be able to be part of his community and our world. While those hopes sound really simple I am finding that they are actually quite hard. Cooper is almost 7 and has never sat down for more than a second. He has chronic ear infections and other pain in his body. He is full of anxiety. I am doing everything in my power to help him and I refuse to give up. My bigger goals include going to a restaurant and a movie as a family. I’d love if he learned to make more sounds and became fluent on his speech device. I want him to have self-care and be able to bath himself and feed himself. And, I want to reach a place where our family isn’t in constant chaos. I want to find peace. Peace all around.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.