Come Join Us On Our Journey

My hope is that through sharing his journey, sharing our journey as a mother and son, we can break down the stigmas. That it not only helps us but other children and parents who are going through the same struggles, who have the same fears, who like us often feel alone in a crowded world. My hope is that I am helping build a tribe for both of us and others who are diagnosed and parents of children with autism. 

Raising a child with autism can be hard, heck some days it can be extremely difficult. In addition to the struggles of simply raising a child with multiple autistic behaviors, the stigma that we face as parents can be devastating. The isolation can be sinister. 

Like many parents raising a child with autism I had to reduce my work hours and change to another career because of the demands that caring for my son placed on me.  Although I did this without regret it further isolated me and caused me to lose a sense of my personal identity. In many ways changing careers and reducing my work hours also caused further stigma and judgement. 

The shame and isolation that people with autism and their families feel is not totally unique from others who face stigma due to "invisible disabilities" but in many ways the characteristics Aaron and many others with autism have created a perfect storm for rejection. 

Many children and adults with autism have behaviors that society at large find uncomfortable, inappropriate, even frightening. Truth is sometimes they can be frightening to us as parents on multiple levels. 

Some of the characteristics Aaron had as a child with Autism include:

⦁ Aaron would hit himself with closed fists in the head, rock, and yell when he was over stimulated by noise or crowds of people.

⦁ He wore pullups over night until the end of his 5th grade year because of bladder control issues. 

⦁ He would overeat. He would literally eat until he made himself vomit and often times that would not stop him. 

⦁ He would cry out in pain when his fingernails, toenails, and hair were cut. 

⦁ He didn't like certain foods due to their texture. 

⦁ He did not understand personal boundaries. 

⦁ He couldn't make eye contact. 

⦁ He became upset when his routine was changed without notice. 

⦁ He did not like to be touched this included hugs from family members.

⦁ He was cognitively and socially behind his same aged peers. 

⦁ He snapped fingers when frustrated.

⦁ He makes funny faces and laughs at inappropriate times.

⦁ He does not understand stranger danger. 

⦁ He did not talk until he was 5-years old. 

⦁ He often left me wondering if he felt pain or simply could not express it. 

Some of these characteristics have disappeared or become minimized while other characteristics have appeared or become more problematic due to his age and his size. 

Some of the characteristics we deal with now include:

⦁ Aggression and threats towards others often triggered by frustration from not being able to communicate his wants, needs, or emotions, being touched, a drastic change in routine, or criticism of him or his work that makes him feel less than/or stupid. 

⦁ He does not understand social cues. 

⦁ He does not understand mean words or jokes. 

⦁ He will only allow me to cut his hair and no one but him can cut his finger or toenails. 

⦁ He can't make eye contact. 

⦁ He makes funny faces at inappropriate times. 

⦁ His portion control has to be closely monitored at mealtime. 

⦁ He does not understand social cues. 

⦁ He doesn't understand the hormonal changes his body goes through as a young man. 

⦁ He is very routine based and a change an unexpected change in that routine can be triggering. 

⦁ He is cognitively and socially behind his same aged peers and feels more comfortable interacting with children 7-10 years old. 

⦁ He can only take very specific instructions. 

⦁ He is unable to hold age-appropriate conversation. His conversations are childlike. 

⦁ He is 90% non-verbal, talks with a slur, and cannot make certain sounds. When he becomes upset or emotional, he becomes harder to understand. 

⦁ He can still find himself overwhelmed by large crowds and wears sound barrier headphones to reduce noise stimulation.

Often times people look at his behavior and attribute it to bad parenting, him being a creep or predator, laziness, or him simply being rude. These traits and behaviors played a huge role in his biological father and his family alienating him, how the school system and teachers treated him and lead to him being pulled from public school and homeschooled. He was never invited to play dates or birthday parties and until 2021 when he had his 25th birthday party and invited everyone on his FaceBook no one had attended his birthday parties. 

I often find myself trying to keep my struggles as a mother hidden afraid of judgement. Not only am I afraid of being judged as a parent but of Aaron being judged. And now that he's older I often hide our struggles out fear of the legal system as well as the normal social judgements. 

The reality is I am now and probably always will be responsible for providing the majority of his financial support for his necessities, facilitating his side jobs, and the guinea pig sanctuary. 

Aaron's desire to sell his art, to do his yard helping work, to "save the guinea pigs" and to have a guinea pig sanctuary, to work and be independent has forced both of use to step out of our comfort zone more but that is still a very scary place. Concerns about discrimination, him being mocked, harassed, taken advantage of, or worse plague me (and most parents).  

I strive every day to ensure that while I am here that he is supported and that he has the ability to grow as much as possible. My worst fear is what happens to him after I am gone but again, I am not alone in that fear. It's something that plagues most parents of children with special needs.  I am not perfect, not have or will I ever claim to be. There is no handbook I am winging it. 

I hope this helps folks who understand us and what our story is about. 

- Veronica, Aaron's mom, advocate, and biggest cheerleader