Special Needs Spotlight || Charlie

Miggy: Hi Barb! Thanks for being here today and sharing your family and especially your son Charlie and your family’s journey with Autism. First, can you take me back to the day you knew something wasn’t quite right with your Charlie? How long did it take you to get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Barb: Charlie is our first child, so everything about being a parent was new and joyful and also slightly terrifying. 🙂 I remember when he was around a year old that he could play by himself with his toys for an hour, and I found that hyper focus kind of odd. I asked my pediatrician if it was possible that he had autism and our doctor said he didn’t see anything concerning.

Charlie was a happy kid and we were so happy being his parents. He did have some problems with hitting other children, and he wasn’t a big talker. We didn’t ever see a big regression or loss of language with him, which can be a sign of autism in young children. He was just our Charlie.

By the time he was ready to go to preschool at age 3.5, I was a little apprehensive that he wasn’t ready socially. Once I saw him in a classroom with other kids his age, I could tell immediately how far behind them he was developmentally. He didn’t want to engage in circle time or play with peers, he wasn’t talking as well as the other kids, and he tended to hit and run away. I sat in our preschool director’s office and sobbed to her that I didn’t know where to turn for help. She was so kind and warm and was able to refer us to The Children’s Center, a mental health practice in Salt Lake City that specializes in children with autism. They sent a clinician to observe Charlie in his preschool class and recommended that we pursue further testing. Because he was so young, he didn’t receive a diagnosis officially until a couple of years later. Technically, he was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) and anxiety, as well as a moderate speech and receptive language delay.

I remember feeling a lot of grief and worry and uncertainty, and an unwillingness to talk about what was going on. Our families and close friends knew we were working through some things, but since Charlie’s diagnosis was still kind of up in the air, I was really reluctant to use the word “autism” for a long time. I think I had to confront my own bias and stigma associated with that word before I could talk to other people about it. I was so worried about labeling Charlie and that in doing so we would limit him or people would pre-judge him.

However, what we found as we went along is that the more open we were with people, the more grace and patience they had with Charlie. We saw a willingness to give him the benefit of the doubt and extra consideration to do things a little differently. I remember the feeling of grief and fear from the beginning so clearly, but I don’t have those feelings now. Charlie’s strengths greatly outweigh his challenges and we are just living our lives in our version of normal.

Miggy: Could you explain how Charlie’s needs affect your day-to-day life?

Barb: In the beginning of this journey, I felt really isolated. Charlie used to run away from me a lot (technically called elopement), which made going on play dates to the park or the zoo really hard. We had our second child when Charlie was 2.5 years old, before we began the diagnostic process. It was really hard to have a tiny baby, and a high needs toddler, and not really know what I was doing.

We spent many hours driving to therapeutic preschool, attending speech therapy, going to social skills group, and doing Applied Behavioral Analysis (ABA) therapy at home. I would see our friends participating in sports and music and other fun things and feel sad that our extracurricular activity was therapy. ABA in particular was challenging. Charlie was in school all day and then came home to do 2 hours of therapy. It was a huge commitment for me and for my other kids (our third child, Bonnie, joined the family in 2014). They witnessed a lot of tantrums, and had to deal with their mom being focused on helping with therapy sessions every day. These therapies took a lot of time, energy and money, which meant that we didn’t have a lot of resources for other fun things. However, because of that work that we put in and the work Charlie has done at school with his excellent teachers and aides, he currently doesn’t need any therapy and is thriving. Now, most of the extra care he needs involves me connecting with his teachers about his IEP and school goals.

Miggy: What are the biggest worries you face for Charlie? On the flip side, what are the hopes and dreams you have for him?

Barb: When he was littler and couldn’t communicate well, I was so worried that he’d never be able to tell me if something bad happened to him when I wasn’t with him. That haunted me for a long time. Now he’s a great talker and that worry has lessened.

“Rites of passage” events used to make me cry and cry because I wasn’t sure that my child would be able to make those choices. Would he ever drive? Date? Go to college? Those were my biggest fears and heartbreaks. The uncertainty about his level of functionality and engagement with the world just gutted me.

Now he is thriving and functioning on such a high level that I don’t have those worries anymore. Now my worries seem more like my worries for my other two kids. Am I doing enough? How can I help him more? Is anyone being mean to him? I also worry that Charlie will never outgrow his food aversions and learn to eat fruits or vegetables.

I have such big dreams for Charlie, but they pale in comparison to the dreams he has for himself! He wants to be an inventor or scientist, and also king of the universe. 🙂

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Barb: We have too many funny moments to even count. Charlie is a funny kid and our ability to see the humor in things has kept us afloat. This actual sentence came out of my mouth one time, “Don’t put the marble in your mouth. Yes, OK, you can lick it.”

His language delay made his funny toddler speak stage last longer, which we got a big kick out of. When Bonnie was a baby and she would cry, Charlie would yell in distress, “Milk her, Mom!”

Miggy: How can people best approach or respond to Charley? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Barb: Charlie is just a kid–he wants to play with his friends and be invited to birthday parties and talk about Minecraft and play LEGO like a lot of 8-year-old boys. He just might do or say things that are a little quirky, so a little patience and understanding go a long way. Here’s an example: I’ve noticed with Charlie that he has a hard time recognizing faces, and therefore remembering people he has met many times. He does much better when seeing those people in context, like seeing a school friend at school. Knowing this about him can help social interactions go more smoothly if people remember to introduce themselves again (and again) without taking offense or teasing him.

I have appreciated when people ask me questions because it means they are seeking to understand, which is good! I’m not easily offended, pretty much any question is okay. I DO tend to get a little bugged when people assume they know what Charlie is going to be like because they know someone else with autism. (Ahem, I looking at YOU school bus driver who called him “hyper” who said he understood the “type.” Grrrrrrr.) Charlie is an individual who happens to have autism. And if you’ve met one child with autism, you’ve met one child with autism. It’s called a spectrum disorder for a reason!

Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?

Barb: I recently experienced this. Another mom approached me privately after I shared in a large group that I have a son with autism. Her child was just diagnosed and she was trying to find her way. She was happily surprised to find me talking so openly about it and confided in me that she hadn’t been able to do that yet. I was so happy to share my experience with her of being open and upfront with people and how it helped both Charlie and me.

If I could go back and talk to my past self, I would say it really and truly is going to be okay.

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Barb: I had to learn to advocate for my kid. I was always so grateful for any help we received that I sometimes forgot that I needed to get in there and get stuff done for him. It’s okay to be persistent and insistent. I have compassion and understanding and gratitude for teachers and administrators and doctors, but I have to remember my job is to be Charlie’s advocate and champion.

Barb, this is so wonderful, thank you! “I have appreciated when people ask me questions because it means they are seeking to understand, which is good!… I DO tend to get a little bugged when people assume they know what Charlie is going to be like because they know someone else with autism.” Such an important thing to remember. If there is someone in your life or sphere of influence with a disability, it’s important to get to know them as an individual. It’s funny that sometimes we can see this huge range of “normal” with people who don’t have a disability of one kind or any other and we don’t feel the need to categorize them. “You  know that Sally gets super bugged when people do this…” or “John can never remember names–he has a really bad memory…”  But often if someone has a disability, it’s easier to make these broad generalizations about them because of their disability and often we feel the need to link everything about that person to their disability. Recognizing the individuality of a person with disabilities is imperative to seeing them as fully human. I believe that. Thanks again Barb for sharing your beautiful family with us today.