What Parents of Children with Disabilities Wish You Knew

Amy shares some firsthand responses that parents of children with disabilities wish their family and friends knew and understood.

My 3 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 affect him and our family dynamics.  His success stems from the people in his life understanding how he functions in this world, not how this world expects him to function in it.  I try to educate them to not compare him to “kids his age” but rather accept where he is in his development.

I recently asked a group of moms, 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 of 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’s totally normal for kids to be picky eaters.”

Although this may seem encouraging, it actually is the opposite.  We work SO hard daily to overcome issues that for most kids come easy.  Walking down the sidewalk safely, willingly handing a toy over to a friend, 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 with children with disabilities.  Here are what some other moms had to say.

I wish family members would not try to minimize or discredit the diagnosis of my son.”                                                                                                                                     Sydney – Mom to son, Carter, who has Autism Spectrum Disorder, 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, who’s good friend has a daughter with Autism Spectrum Disorder and multiple other  developmental disorders.

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 receptive and expressive.  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 that struggle in these types of areas by not comparing our children to neurotypical children or thinking our children are behaving badly.  Our children are HAVING a hard time, they aren’t GIVING us a hard time.  Let’s hear from some other moms.

“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 the lose their audience.  A meltdown continues with or without an audience.  Kids having meltdowns need to be kept safe from harming themselves and need to have caregivers and family members who stay calm and offer comfort after the meltdown.”                                                                                                                                Jessica – Mom to daughter, Sophia, who has Sensory Processing Disorder.

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

I Need You To Accept My Child’s Needs – My child NEEDS medication daily.  He suffers from profound ADHD and without his medication to calm his little body down, therapy is virtually ineffective.  He also NEEDS his ABA therapy.  I’d love nothing more than for him to be socially ready to be mainstreamed into a typically developing preschool, but he’s not typically developing.  Understanding that a child with developmental delays or other disabilities will have different needs than other children is so important for families and friends to accept. More than likely, the parents of the child 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 advice for OUR child’s needs.  We need your support in that.  Here is what these moms 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 Abilities

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 disorders, like ASD or ADHD, excel in so many areas, despite their challenges.  My son has a difficult time in social settings and in 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 moms share how their child’s strengths are helping them overcome challenges and how family and friends can be supportive.

“Every child has abilities, don’t try fitting a square into a space created for a circle. Be inclusive and make space for everyone.”                                                                 Aileen – Mother of 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 help encourage her by continuing to respond to her when she speaks.”                                Jo Anie – Mother of 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 or a related disorder is “I am sorry.” Trust me, we have already gone through the bereavement process.  We’ve already cried the tears.  Now we have pushed up our sleeves and are helping our child be the BEST they can BE!  We’ve realized that their diagnosis makes them who they are.  We wouldn’t change them.  We want to help them overcome some of the challenges but we embrace their uniqueness.  We are proud of their successes and we will be a trailblazer in helping them succeed.  So please don’t tell us “I am sorry.”  Instead, tell us:

  • “I am so proud of how hard you are working to help your child!”
  • “You are doing a great job!”
  • “I know it can’t be easy and I respect your dedication.”
  • “Is there anything I can do to help?”

Thank you so much to each mom that contributed.  Opening up yourself, and your child’s disabilities 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 our support systems.  We need you. Our children need you.

Amy

“It is my hope that my family and friends will embrace Barclay’s truth and support me as I step outside of the box of traditional parenting to help him close in the gaps where he struggles while enhancing his beautiful and amazing strengths.”            Amy – Mom of son, Barclay, who has Childhood Apraxia of Speech, Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorder.

 

 

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Author: bigabilities

Amy Nielsen lives in Orlando, Florida. She is the proud mother of four children ranging in age from 3-30! She and her husband, Brent enjoy sports and traveling. Amy is a former teacher with 20 years experience, a freelance writer, and special needs advocate. Her mission is to help educate and empower families of children with disabilities to focus on their child's interests and strengths.

2 thoughts on “What Parents of Children with Disabilities Wish You Knew”

  1. Amy, you amaze me with every article I read! I love your parenting skills and I love how you have taken what can be a difficult daily routine and have made it work for your family! I love that you just dive in to educate yourself and others about children with disabilities! You my dear friend are a true blessing to not only your family but to ours as well as so many others!!

    Like

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