What Parents of Children with Special Needs Wish You Knew

My three 1/2-year-old son, Barclay, has a trio of disabilities: Childhood Apraxia of Speech (CAS), Attention Deficit Hyperactivity Disorder (ADHD), and Autism Spectrum Disorder (ASD).

I am pretty outspoken with family and friends about how these disorders impact him and our family dynamics. His success stems from the people in his life understanding how he functions in this world, not how it expects him to function. I try to educate them not to compare him to “kids his age” but instead accept where he is in his development.

I recently asked a group of parents, who have kids with special needs or know of kids with special needs, what are some important points they believe friends and family members need to know.

I Need You to Accept My Child’s Truth

My child has a diagnosis.  It’s part of who he is, just like the color of his eyes or his hair. I’ve accepted it and embrace it, and we live within that space the best we can.  Well-meaning friends and family members often say things like:

• “Your son looks perfectly normal.”
• “He doesn’t seem like he’s on the autism spectrum.”
• “All 3-year-old’s have meltdowns.”
• “It is totally normal for kids to be picky eaters.”

Although this may seem encouraging, it is actually the opposite. We work SO hard daily to overcome issues that, for most kids, come easy. Walking safely down a sidewalk, willingly handing over a toy to a peer, getting through a trip to the grocery store, finishing a meal; all of these types of situations are addressed with a GREAT deal of effort on our entire family’s part. So minimizing the effort is often hurtful for families like mine. Here is what some other parents had to say:

“I wish family members would not try to minimize or discredit the diagnosis of my son.” – Sydney, mom to Carter, who has Autism Spectrum Disorder, a significant expressive and receptive language delay, and Sensory Processing Disorder.

“My good friend gets frustrated because many friends and family members will see her daughter on a good day and not understand the normal daily struggles she faces.” – Kaycee, whose good friend has a daughter with Autism Spectrum Disorder and multiple other developmental disabilities.

I Need You to Accept My Child’s Needs

My child NEEDS medication daily. He suffers from profound ADHD and Anxiety. Without medication to calm his little body down, therapy is virtually useless. He also NEEDS his ABA therapy. I’d love nothing more than for him to be socially ready to be mainstreamed into a preschool for typically developing children, but he’s not typically developing.

Understanding that a child with developmental delays or disabilities will have different needs than other children is important for friends and families to accept. More than likely, the child’s parents have done extensive research, visited multiple experts from developmental pediatricians to neurologists to other specialists such as therapists and more. So we’ve been given the best EXPERT advice on our child’s needs. We need your support in that. Here is what some other parents had to say:

“I wish people understood that just because my daughter is on medication and it’s working, that doesn’t mean her epilepsy is gone. We are constantly on edge, looking for any signs or symptoms or triggers.” Maggie – mom of daughter Emily who has epilepsy.

“My daughter suffered brain damage when she was born, and she has language delays, and we don’t know what else is coming down the road. I wish people understood that even though she doesn’t show a lot of signs now, we need to be proactive in getting early intervention to help bridge the gaps in her development.” – Melanie, mom to daughter Arianna, who suffers from unknown origin brain damage.

I Need You to Accept My Child’s Struggles

Struggles are a big part of our life. My son has a severe language delay, both expressive and receptive. He doesn’t understand what most kids his chronological age do. Things like a trip to the dentist can be overwhelming because it is difficult to explain to him what is happening. In addition to the language delay, is a host of sensory processing challenges. The taste of toothpaste, the temperature of food, things like this can cause a huge reaction. Families and friends can support parents of children like mine by NOT comparing our children to neurotypical children or thinking our children are misbehaving. Our children are HAVING a hard time, not GIVING us a hard time. Let’s hear from some other parents:

“I wish family and friends understood the difference between a tantrum and a meltdown. A tantrum usually stops if the child gets what they want or they lose their audience. A meltdown continues with or without an audience and doesn’t stop until it has run its course. Kids having meltdowns need to kept safe from harming themselves and need their family and caregivers to stay calm and offer comfort after the meltdown.” – Jessica, Mom to daughter Sophia who has Sensory Processing Disorder.

“Often people would comment when I would carry my toddler upstairs that I was spoiling her when in fact climbing stairs was very painful and difficult for her.” – Kim, mom to daughter, Ellie, who has hip dysplasia.

I Need You to Accept My Child’s Strengths

Sometimes people look at our kids and see all the things they can’t do rather than the things they can. Most children with developmental disabilities, like ASD or ADHD, excel in many areas, despite their challenges. My son has difficulty in social settings and communication, but he can memorize entire movies and loves to sing and dance. It is my job to help him grow in his areas of weakness through his areas of strength. These parents share how their child’s strengths are helping them overcome their challenges and how family and friends can be supportive:

“Every child has abilities, don’t try fitting a square into a space made for a circle. Be inclusive and make space for everyone.” – Aileen, mom to son, Elijah, who has Sensory Processing Disorder.

“I wish people understood how much my daughter understands them even though her articulation isn’t clear. When people say they don’t understand her, she hears that, and it affects her self-esteem. Instead, they should ask me to help translate and then respond to her. She is working really hard on articulation, and we hope to encourage her by continuing to respond to her when she speaks.” – Jo Anie, mom to daughter Gabriela, who has Childhood Apraxia of Speech.

I Need You to Accept My Child

The last thing a parent needs to hear when they have a child who has been diagnosed with Autism Spectrum Disorder or any other disability is “I am sorry.” Trust me. We have already gone through the grieving process. We’ve already cried the tears. Now we have rolled up our sleeves, ready to do the work it takes to help our children be the best version of themselves possible. We’ve realized their diagnosis makes them who they are. Yes, we want to help them overcome their challenges, but we embrace their uniqueness and what makes them special. We are proud of their successes, no matter how small, and we will be a trailblazer in continuing our efforts to help them thrive. So please don’t tell us, “I am sorry.” Instead, tell us:

• “I am so proud of hard you are working to help your child.”
• “I know it can’t be easy, and I respect your dedication.”
• “Can you teach me what I need to know about your child’s diagnosis?”
• “Is there anything I can do to help?”

Thank you so much to the parents that contributed. Opening up yourself, and your child’s special needs isn’t an easy thing to do. It’s brave and selfless. I hope that I have honored each family, including my own, in sharing the messages we hope to bring to the people who are a part of our support system. We need you. Our children need you.

“It is my hope that my family and friends will accept Barclay’s truth and support me as I step outside of the box of traditional parenting to help him close the gaps where he struggles while enhancing his amazing strengths.”

Amy, mom of son Barclay who has Childhood Apraxia of Speech, Attention Deficit Hyperactivity Disorder, and Autism Spectrum Disorder