15 Insights on Raising Special Needs Children

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When my youngest child received an autism diagnosis over a decade ago, I was largely unfamiliar with the complexities of parenting a child with special needs. Just months later, we welcomed another child with a different disability into our family. Throughout this journey, I have gleaned numerous insights that I wish to share with you.

1. Parenting a child with special needs does not confer superhero status. It is a common misconception. I occasionally lose my temper and raise my voice. My home is not always tidy, and there are nights when cereal is the main course.
2. Insecurities are prevalent among parents of special needs children. I often find myself uncertain about the best course of action. Despite my efforts to read relevant literature and connect with knowledgeable individuals about my children’s disabilities, the responsibility of making crucial decisions rests squarely on my shoulders, and sometimes I feel ill-equipped to do so.
3. Parents are the true experts on their own children. I may not be an authority on autism or any specific condition, but I have an intimate understanding of my children. When educators or healthcare professionals, who have only briefly interacted with my child, offer unsolicited advice rather than seeking collaboration, it can feel dismissive.
4. We share commonalities with other parents. Like any parent, we enjoy talking about our kids. However, the topics we discuss may differ. Parents of special needs children often come together to discuss therapies, educational plans, and medical appointments, using jargon like IEP, ESY, and ADHD frequently.
5. There can be a sense of isolation. Parenting special needs children sometimes means missing out on experiences that others may take for granted.
6. It can be draining. While all parents experience fatigue, the emotional toll of raising a child with a disability can be substantial. Typically developing children learn independence and ultimately leave home; many of our children may not reach that milestone.
7. Preparing for the unexpected is essential. Many parents hope for the best but are ready for the worst. We know where the exits are located, carry emergency supplies, and have backup plans at the ready for potential meltdowns—events often rooted in anxiety or sensory overload that can disrupt gatherings. This mindset extends to long-term planning for our children’s futures, which requires flexibility.
8. The costs can be significant. Special needs children often require therapies, medical care, and specialized schooling that can strain family finances. Many of us find ourselves in debt, having to borrow against our homes or deplete savings to cover expenses.
9. We feel our children’s pain deeply. Watching our children face academic, physical, or emotional challenges can be heart-wrenching. Their struggles can lead to feelings of helplessness that sometimes leave us feeling physically ill.
10. Encouragement is more valuable than pity. We take pride in our children’s achievements, no matter how small they may seem. While we don’t often dwell in self-pity, a kind word of support can mean the world to us.
11. Clichés can be frustrating. Phrases like “everything happens for a reason” or “God gives special children to special parents” are not just unhelpful; they can be deeply hurtful. Such sentiments imply that there is a purpose behind suffering, which is not the case.
12. Guilt may occasionally arise. Some parents might wonder if they could have done something differently to prevent their child’s disability or if earlier interventions could have made a difference. However, these thoughts are fleeting for many.
13. Defensiveness can stem from past experiences. Some of us have faced unkindness from peers, other parents, or teachers, leading us to be protective of our children.
14. We are open to dialogue. Despite a tendency to be defensive, many parents are eager to raise awareness about their children’s disabilities. We welcome questions and would much rather clarify any misunderstandings than have you guess.
15. The rewards of this journey are profound. The small victories in our lives can feel monumental. The lessons learned from our children’s challenges are irreplaceable. I often hear the sentiment that “my child has taught me more than I could ever teach them,” and until experiencing it firsthand, one cannot truly grasp its depth. It’s a journey filled with compassion, patience, joy, and empathy that transforms us in ways we never anticipated.

In summary, parenting a special needs child is a unique journey filled with challenges, rewards, and a profound understanding of resilience and compassion. The support and connection among parents facing similar experiences can greatly enrich the journey.

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