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The loneliness of being a 'special needs' parent is real

What 'special needs' parents want other parents to know.

The loneliness of being a 'special needs' parent is real
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For many people, becoming a parent opens the door to new communities. A secret language is unlocked through shared experiences and you find you have so much in common with these fellow parents that used to be strangers. Your kids are different people, but they are doing the same things. You're on the same path.

But when you're parenting a child whose brain or body works differently it can feel like the shared language of parenting is a foreign tongue. A diagnosis can feel like your membership card is being revoked or like you're being forced to walk alone.

As a mom in Australia recently put it, "the hardest part of being a special needs parent is the isolation." That mother went viral for opening up about the overwhelming loneliness she felt after her son was diagnosed with Autism Spectrum Disorder (ASD). What she felt is a common experience for parents of kids with disabilities—and we need to talk about that.

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It starts early because even the term "special needs" sets parents and their kids apart from their peers. It suggests that the child's needs are so different that parents of typically developing children could not relate. But really, these parents and their kids need the same thing every family does: Support and community. Unfortunately, too many parents lose those when they need them the most.

Autism can make parents feel isolated in a room full of fellow parents

When Amanda Closs's now 10-year-old son was born he had many health issues and was eventually diagnosed with Autism, an intellectual disability, language impairment, a mild traumatic brain injury and left sixth nerve palsy. "Even though I knew in my heart he was different than other children, once diagnosed I struggled when I got the looks and muttering from others," says Closs, who is also parenting a 7-year-old with sensory processing disorder.

Closs describes feeling like she was walking down a lonely road, something mother of three Jessica Schurman can relate to. "It is probably one of the hardest parts of having a child who is beautifully different," explains Schurman, whose middle child has ASD and is considered an "emerging speaker" at age 11, requiring support in several areas of her life.

Schurman explains: "Don't feel sorry for me, she is delightfully chaotic, a beautiful mess, and loving her is a wonderful adventure—that's a quote I saw somewhere but I always felt like it summed up my girl beautifully."

When her daughter was younger Schurman wished she knew a group of parents with kids going through the same things her daughter was, but says, "I also yearned for her to be understood by all her typically developing peers, and their parents."

One of the reasons why the door to the parenting club seems to shut on parents of kids who are disabled or developing differently is because parents of typically developing kids can feel like they don't know what to say or do, so they do nothing because they are afraid of doing the wrong thing. But parents of non-typically developing kids say being welcomed would mean so much.

"Even though we may not be able to participate in the same activities, sometimes there's ways to modify the activity so that everyone can be included," says Danielle G. Her 6-year-old has Autism, childhood apraxia of speech and ADHD. "I know it might seem like a pain, but it means the world to our family when you ask us how something can be adjusted to allow us to participate a bit more easily."

Fellow ASD parent Allison just wants parents of typically developing kids to understand that "it's okay to ask questions," on the road to inclusion.

Inclusion doesn't mean ignoring disabilities + differences

Angela S. is mom to a 7-year-old diagnosed with ASD, ADHD & Sensory Processing Disorder. While he "requires support maneuvering social situations as he gets easily frustrated and has meltdowns", these disabilities are somewhat invisible.

"I'm sure that other parents mean well, but being told that he's just a 'normal kid' isn't encouraging," she explains. "It feels dismissive & like they don't believe me about the struggles kiddo and I share."

Karla H. has two sons, ages 5 and 6. Her oldest has Sensory Processing Disorder, a receptive language delay, ADHD with severe symptoms, and an intellectual disability. She says that milestones may be different for her oldest child and his typically developing peers, but that doesn't need to keep parents apart. "I want to celebrate your kid riding a two-wheel bike, but it's A-okay to also celebrate that my kid is still working up the courage to even pedal." she says.

Abbey C, a fellow parent of a child diagnosed with ASD, agrees. "Understand that our milestones are different but just as worthy of celebration," says Abbey, who recommends parents of typically developing children just ask as many questions as they need to and teach their children to do the same. Instead of assuming a kid can or can't do something, ask their parent how they can be included.

The cure for parental isolation is inclusivity

Jessica W. is a mom of two. Her son, age 5, is non-verbal, diagnosed with ASD and a global developmental delay. Her 3-year-old daughter has a speech delay and learned behaviors from her older sibling. There have been times when she hasn't left her house in months because it was too hard to take her kids anywhere, knowing that activities and attitudes would not be welcoming. She advocates for inclusivity for this reason, and because it's good not just for her kids but for all kids.

"By including us, you help set up our entire community for success," she explains. "By modeling and teaching our children inclusion, compassion and friendship we can help them to grow into well rounded individuals and create communities that look after each other."

One of the ways we can create inclusive communities is by reducing mom shaming and accepting that certain parenting techniques don't work for every kid.

"Parenting a kid with 'short and sweet' direction needs, I can sometimes sound harsh," Karla explains. "It's not my kid being bad, it's that the thinks differently than every other person in this room."

How to support parents whose child has a disability

It is totally awesome for parents dealing with disabilities or health conditions to seek out communities of other parents dealing with the same diagnosis, but that doesn't mean they should not also be welcomed and celebrated in larger parenting communities.

"This was harder, this meant being vulnerable and open with men and women who were not like me, and didn't have children with disabilities," says Jessica Schurman.

She continues: "It meant always, always celebrating her and no matter how I was feeling walking into whatever building she was in and owning and being okay with every part of her differences, even the messy hard ones. I had to be okay with who she is and acknowledge that she is always growing into the person she is supposed to be, because if I wasn't okay with it then I give everyone around her a reason to not be okay with who she is."

Parents of typically developing kids can help parents like Schurman by joining in the celebration of their child, so that they don't have to walk into every situation as the only advocate for their child and so that they have a safe person to feel their feelings with.

Fellow ASD parent Pam M. wants families of kids with disabilities to be given the opportunity "to join other families in activities that they normally do, such as, bike riding, going swimming or to the beach with another family."

But finding those connections can be hard, because as Naomi S. points out, it can be so hard for to connect with other moms in social groups when children are young (and often pre-diagnosis) and don't behave like the other children. That's why we need less mom shame in parenting circles and more acceptance that kids don't always sit quietly in story time.

Sometimes they cry, sometimes they flap, sometimes they melt down. But we can still befriend those mamas—it can be as easy as asking her how you can help or reminding her that she is doing a great job.

Autism mamas are loved + so are their babies

Mothers of kids with ASD have the same human needs all mothers do.

When asked what she wished she'd had on her loneliest days, Amanda Closs said, "Someone to tell me it's okay and I'm doing it right. Wipe my tears as I struggle thinking I'm doing it all wrong. Reassurance that we will be okay."

All parents need that. And all parents can provide it to each other, even if their kids are not developing in the exact same way.

Karla H. says on her loneliest days she wished for ,"A nap. And someone to just sit quietly and cry with me. And someone to tell my child that he is so loved, because I need other people to say it, so I can hear it."

To all the ASD mamas out there and other parents raising children with disabilities, hear us when we say your child is loved and so are you.


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