Understanding the Challenges of Raising a Disabled Child

As a parent of a 23-year-old adult with autism and epilepsy, I often wish people truly understood the immense challenges and sacrifices that come with raising a disabled child. In this article, I will share my experiences and insights to help others gain a better understanding of not only the struggles but also the joy and worth in having a disabled child.

The Hardship on the Caregiver

First and foremost, the role of a caregiver is not an easy one. Caregiving can be emotionally and physically exhausting, and the caregiver is at a much higher risk of developing depression, illness, and even premature death. Yet, it is worth noting that caregivers receive virtually no support.

Support for the Autistic Community

My son, who is mostly nonverbal and has uncontrolled epilepsy, has several neurological conditions that affect his daily life. Despite these challenges, he is a part of the autism community and should be included. It is crucial to remember that autism is one part of his diagnosis; his other neurological conditions significantly impact his functioning. As with any individual, he deserves to be heard and valued.

Communication and Inclusion

Many of my wishes center around communication and inclusion. People often misunderstand or misinterpret the abilities of a nonverbal individual. For example, my son understands spoken language well, and he communicates through an augmentative and alternative communication (AAC) device or picture exchange communication system (PECS). It is important to speak directly to him and avoid speaking about him in his presence.

Inclusion is another key aspect. I would love people to include my son in their plans and social gatherings. However, I do not want him to feel forced to participate. His decisions should be respected, and he should have the freedom to choose whether an outing or activity is suitable for him. Autistic individuals, like anyone else, have their own preferences and feelings that should be considered.

Seizures and First Aid

Seizures can be scary, and there is a wide variety of them, more than 40 types. It's essential to understand basic first aid procedures. In many cases, calling an ambulance for a brief seizure is overkill; advising the person's neurologist and helping them rest at home might suffice. Knowledge about different types of seizures and appropriate responses is crucial.

The Worth of Raising a Disabled Child

Many misconceptions exist about the worthiness of raising a disabled child. Raising my son has been a difficult path, but it has also been a worthwhile one. He is an outstanding person, and he should be valued as much as any other individual. Every disabled person deserves that same recognition and respect.

Appreciation and Help

Statements like "I don’t know how you do it!" or "I admire you for maintaining a smile on your face all these years!" are not true forms of appreciation. Instead, they often reflect a perception that the child is a burden. In reality, my son is an amazing, happy person who brings joy to my life. His presence does not diminish my smile; it enhances it. Every parent does their best, and no one is more deserving of respect than another.

Finally, I encourage others to stop just offering words of support. Instead, take action to help. Offer to run an errand, hang out with my son, or help with something he enjoys. True support is not just offering words but following through with actions.

Lastly, my son's disability does not define him, and it does not need to affect your interactions with us. He is simply a part of who he is. It is acceptable to talk about his condition and to be honest about the challenges we face. Let’s move past the stigma and focus on creating a world where all individuals, regardless of their abilities, are valued and included.