It stands to reason that the people in one’s life—be they acquaintances, friends, neighbors, family members, teachers, doctors or baristas—don’t really know what it’s like to raise a child whose needs, challenges and gifts are different from those of the average child. Unless they have walked that path themselves.
Baltimore’s Child invited parents of kids who have special needs to share the honest reality of parenting. We asked: “What do you wish your friends and family knew about raising a child with special needs?”
“We’re exhausted and need help, but sometimes are afraid to ask for help. We’re lonely and want to be a part of a friend community and it’s really hard, because our kid is so different. Invite us out. Invite us over. Be persistent. Please don’t be afraid to ask us questions—we love questions. If you can’t understand what our son says, please ask us. Ask us how to communicate with him and get his attention. We also love talking about Nate’s many strengths! Know that while there are similarities between kids who have Down Syndrome, all of our kids are unique.” – Crista Y.
“That stricter discipline doesn’t cure autism.” – Joanna B.
“I wish everyone could feel this same pure, absolute, endless love that my daughter gives me. I would love people to experience not just the pride but honor at being my child’s parent and not just the joy but wild exhilaration at the slightest milestone achievement! And I would love for people to feel the excruciating pain that I feel when someone says, ‘I’m so sorry to hear that,’ whenever I mention that I have a little girl with Down Syndrome. Having a child with an exceptionality has changed the course of my entire life and I could not be more proud than I am to be the mom of my Grace.” – Krystie F.
“That our family is no different from any other family.” – Lauren O.
“At every milestone that my daughter misses comes a whole new mourning process. At first it was the physical milestones. And now that she is older it is still that, but also academic and social milestones that aren’t happening. And as happy as I am for my friends’ children’s accomplishments, as well as those of my other children, I am still profoundly jealous and sad that my daughter has to deal with so much.” – Rachel T.
“The expectations I have of both my daughters—one developing typically and one developing with Down syndrome—are honestly the same, to live the most robust, joy-filled lives that they will be proud of at the end of their days.” – Ashley J.
“My kid is not an ‘angel’ or a ‘saint,’ but a child of this earth. My ‘special needs’ kid is more like your ‘non-special-needs’ kid in soooo many [more] ways than you may be comfortable imagining.” – Meredith H.
“I know sometimes it’s awkward for your kids to be around my kid. But when you teach them to be patient with him, I see it and I’m completely appreciative. I know there’s a lot of coaching involved.” – Karen C.
“Treat our kids like you’d treat any other child. Invite them places where you’d invite other kids.” — Lynn K.
“Friends and family do not realize what they take for granted in life with their kids who are typical, such as just a simple trip to the store to get milk [when] you could leave a 12-year-old at home. In our lives, you can’t. The simple things in life everyone takes for granted, we cherish those things.” – Sharyn G.
“[They have] the biggest heart and the strongest will,” — Adam D.
“When your child is under 21, services are guaranteed. At 21, there are no guarantees. Children with special needs are cute. Adults with special needs are not.” – Amy S.
“A little patience goes a long way.” – Shannon P.
“We need to learn how to see the world through their eyes.” – Andy R.
“They are capable of anything our world allows them to.” – Candice S.
“Having a high-functioning child with severe to profound hearing loss means that she is working ALL OF THE TIME to make sure she doesn’t miss anything, combining lip reading, body language and hearing aids to make up for her impairment, so that you don’t even notice she has one. She exhausts herself trying to seem ‘normal’ all day at school and in social situations. Her determination moves me so deeply and I know she thinks nothing of it, but I want for her to be recognized for the hard work she puts in, day after day, showing up and getting life done. She amazes me with her strength and resilience. It’s stunning.” – Catherine D.
“They were born to the right parents. We know them best, so we can be their best advocates.” – Maya L.