Updated: Apr 7
*Most authors for this blog series have chosen to remain anonymous in order to protect the confidentiality of their children while still sharing their story. Documenting our stories helps us process our experience, sharing our stories help us connect to others with a shared experience, and reading others' stories help us not feel so alone. Welcome.
How I Talk to Family and Friends About My Child with Special Needs
It is difficult for family and friends to talk to parents about their children who are not typically developing. It is similarly difficult for the parents of these children to figure out how to navigate their responses. This is even more difficult in the South where we were raised on polite speech and taught that every family get-together is a command performance.
While it isn’t a tragedy to have a special needs child, the acceptance that your child is not the child you expected to parent is often met with its own special kind of grief. Like all grief, it is hard to talk about. Also like all grief, it never goes away, though it does become more comfortable.
While special needs parents cannot control what others ask them, we can control our responses.
My daughter is seven. She has an expressive and receptive speech delay, fine motor delay, slow working memory and severe inattentive ADHD. We have been on the therapy/
developmental pediatrician/geneticist road since her second birthday and I suspected she was not neurotypical as early as 9 months old.
She is a sweet child; to know her is to love her, but she cannot be forced into too many activities or situations that make her uncomfortable. She cannot be fed the wrong foods or allowed to become overwhelmed, hungry, or tired. If those things happen, she becomes dysregulated and she cannot recover without real, honest-to-goodness effort. She tries her sweet little hardest, but sometimes the breathing, counting, and strategies we and the talented professionals have taught her are no match for life.
I am still learning how to parent my special needs daughter. (I am still learning how to
parent my typically developing daughter, for that matter.) I have a really sensitive heart and I get my feelings hurt really easily. My inner critic is a fierce one and it is difficult for me not to internalize external comments. In the moment, I hear these things and they slay me. Because of that, I have worked with a professional to come up with a few stock responses that help me regulate myself and navigate these conversations. Here are a few topics that come up again and again for me, and my guess is these come up for other parents of special needs and differently-wired children:
1. Comments from adults about how she looks. In this case, people typically mean well. Most
frequently I hear, “but she doesn’t look any different.”
My response: “You are so kind to say that, we think she is beautiful too.”
2. Questions about her diagnosis from both adults and children. Most commonly I get, “So do you know what is wrong with her?” This always stings, but I choose to interpret it as a person simply seeking additional information. When children ask, it's always just information seeking.
My response to adults: “She is exactly who she is supposed to be. For reasons no
doctor can explain, her neural pathways didn’t develop typically so we are trying to give
her all the support she needs to be as successful as she can be.” I find it helpful to always add in the last clause.
My response to children: “You know how you had to learn to read and write sight
word by sight word, sound by sound, and letter by letter, but you never really had learned to talk, you just talked? Well, she has had to learn to speak and manage her feelings piece
by piece and we are helping her with that.”
3. Comments about how I discipline my child. Most commonly I hear something like, “Can’t you just tell her to suck it up or stick her in time out?” There is no positive interpretation for this one.
My response: “Well, I am parenting the child I have and this is what works for her. I too
wish it were easier.” **As an aside, my child interprets time outs as rejection and yours might
4. Guilt trips about not attending family get-togethers at inconvenient times or as many as
demanded by our families over the holiday season.
My response: “I wish I had a magic pill that would make it different, but we are doing the best that we can to give everyone some of what they want, and we are prioritizing our children. We would love to spend more time with you when it is not so hectic.”
5. Comments about our typically-developing child not getting enough attention because of the
needs of her sister.
My response: “Sure, I worry about that, but we get reports from her teachers that she is a very empathetic child and we are so proud of her. The fact is, this is her life and she is fortunate in so many ways.”
6. Suggestions of any kind.
My (internal) response: I think about what was said, but not for too long.
None of this is easy and it takes practice and intention, but here’s the thing: As long as we’re doing our best, and our best is all that we can do. And that, I have found, is a perfect response when all else fails.
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