8 Things Parents Of Children With Special Needs Want You To Know

8 Things Parents Of Children With Special Needs Want You To Know

Each family is unique and looks quite different from the next. All families with children have some similarities, of course, but in the end they are unique in some way. Regardless of our uniqueness, we all benefit from community, friendship and positive interactions.

It’s quite easy to see the world only from our own perspective. However, when we think only about our own experiences and our own history, we tend to make assumptions, or fail to show proper empathy to those around us.

Taking time to get to know individuals and families in our community, and taking time to listen and read, can help us all learn how to interact better, and show empathy to others. Most importantly, we should listen to individual families, to find out how we can be the best kind of community for them and their children.

Families with children who have special needs are like all families, in that they benefit from positive community interactions and friendships. Unfortunately, they might also feel left out of community interactions, or lose friendships, due to a lack of understanding and empathy from those around them.

It’s not uncommon for their children to be lumped into a stereotype or misunderstood (especially in cases of special needs which are less visible). They might deal with stares, judgements about their child’s behaviour, or questions that make them feel as though they aren’t raising their children properly.

I am not a mother of children with special needs, but I do hope to help friends and family who are parents of children with special needs to feel better understood. Bearing in mind that ALL families are unique, with or without special needs, here are 8 things parents with children who have special needs might want you to know:

#1: Regardless Of Diagnosis, My Child Is Still A Unique Individual

While there might be physical characteristics, behaviour patterns, or health complications that are associated with a certain diagnosis, each child is still unique. For example, not all children on the autism spectrum (ASD) are non-verbal or have savant skills.

It isn’t uncommon to hear that all children with Down syndrome are always happy and sweet. However, these children have their individual personalities and a range of emotions, just like you and your children.

Don’t make assumptions based on a diagnosis. Take time to get to know a family and a child. If you’re uncertain about something, ask – for example, how you can help their child feel comfortable at a playdate.

It’s also important to note that different diagnoses or terms can mean a variety of things. For example, neurotypical is often the term used to describe children who have expected psychological and neurological development. Neuro atypical is sometimes associated with ASD, but it can also be used to describe other developmental concerns.

#2: Don’t Make Assumptions Based On My Child’s Appearance

We’ve been hearing it since we were young: “Don’t judge a book by its cover”. Advice that spans generations usually sticks around because it’s good advice. Children are no different; don’t judge them based on how they appear. If a mom says her child has an illness, disorder, or other special needs, trust her. Saying things like, “Well, he looks too healthy to have…” isn’t helpful; neither is it really a compliment.

Many special needs are invisible, but it doesn’t make them any less serious or real. If a mother has a child with cystic fibrosis (CF) and she asks you not to visit when you have a cold, listen to her! While her child might look exactly like yours, a simple cold can become a serious health problem. Appearance does not equal health.

It’s also important to realise that even if children have very visible physical special needs they might easily be neurotypical. A child might be hearing impaired or, for another reason, might have some speech difficulties; his speech is not a reflection of his understanding. Another child who is hearing impaired might speak quite clearly and hear well with the aid of a device, but she might still have unique needs that a child without a hearing impairment does not have. Never make assumptions about health or development based on children’s appearance. Listen to their parents and trust what they say.

#3: Don’t Act As Though My Child Were Invisible

All children are important individuals, worthy of respect. When children are present, we shouldn’t talk about them as though they weren’t there. All children, including children with special needs, deserve respect.

A child with severe physical special needs can very likely hear or sense when someone is speaking about her. A non-verbal child can very likely understand what you’re saying, even if he can’t respond in a way you’ll understand.

Acknowledge their presence and don’t act as if they weren’t there. Asking “Can she hear me?” or “Does he understand anything?” can sound incredibly rude and disrespectful. If you say hello and a child is hearing impaired, his parents can let you know. Perhaps the child didn’t hear you, but he might have seen your kind smile and loved that you acknowledged him.

Be kind, be respectful, and acknowledge everyone around you, even if they aren’t able to respond in a way you understand. The inability to communicate easily, a hearing impairment, or other special need, doesn’t mean a child can’t understand a feeling of respect.

#4: Keep Inviting Me Even If You Feel Like I Always Decline

Being a parent of a child with special needs is often more than a full time job. Many parents work outside the home, have more than one child, and try to balance life with extra medical visits and therapy appointments. Life can be exhausting.

Having a busy life often means prioritising, and making sacrifices and choices that are best for your child(ren). A mother who has a child with sensory issues could find a playgroup overwhelming for her child. She probably loves the company of other mothers, but has to sacrifice that so her child is okay. Even if she turns down one hundred invitations, please keep inviting her. Just knowing she and her child are accepted and, if her circumstances change, she is welcome, might mean more than you know.

Also, take time to chat with her. Find out if there’s a time of day, or a specific activity that’s okay for her child. Perhaps playgroup is out but a one on one playdate, where parallel play is accepted, could be the perfect activity for her and her child. Maybe she rarely has a sitter, or her spouse works long hours, so she declines every mothers’ night out invite; keep inviting her anyway. Perhaps the stars will align one day, and having a night out could be just what she needs. Don’t take refusals personally.

#5: Invest In A Relationship With Me Even If It’s Hard

Whether it’s your neighbour, a relative, or an old friend who has a child with special needs, taking time to invest in the relationship is important. Depending on the child’s needs, arranging playdates or outings can be stressful. But if it’s stressful for you, imagine how the mother is feeling. Investing in a relationship means finding out how you can help, how you can support, and how you can socialise together.

Sometimes a relationship might simply mean sending encouraging texts, or being a good listener. Sometimes you might become her go-to friend when she needs to get out but is worried how others will respond to her child’s behaviour. Whatever it looks like, take time to invest in it, and get to know her and her child.

#6: Trust Me, My Child, And Even The Youngest Of Siblings

Parents obviously know their child quite well. The child might be old enough to articulate his own needs, and even the youngest of his siblings might know a lot about him.

If a parent says she needs to leave by a specific time, but you think her child’s behaving fine, trust her and don’t question her early exit from a playdate. Perhaps her child thrives on routine and a nap starting 15 minutes late could lead to an evening of meltdowns.

If a child says she can’t eat something but you didn’t hear it from her parent, trust the child. Sure, it’s possible the child just doesn’t want something, but it’s also quite possible a certain food might trigger a reaction and the parent simply forgot to mention it.

If a four-year-old says her brother is terrified of dogs, trust her. If she says he doesn’t like hugs or high fives, trust her. She has far more experience with, and knowledge of, her sibling than any family friend or extended relative.

#7: Saying “Try To Relax And Have Me Time” Isn’t Helpful

Yes, everyone, including mothers, need me time and relaxation. However, it isn’t always as easy as scheduling a massage and running off for the afternoon. Between therapy appointments, and keeping to a routine and childcare her child is comfortable with, me time could be impossible.

Instead of advising relaxation, try to offer relaxation. Ask if you can drop off or send dinner. Ask if you can run an errand for her, or send a gift card for coffee. Perhaps she’ll still have an 8 am therapy appointment, but a little fresh coffee just might be the fuel she needs to get through that moment.

Offering childcare is a nice gesture, but understand that some children have unique needs. If you really want to offer childcare, ask her how you can best get to know her child and his needs first. And then really take the time to help her child to feel comfortable with you.

#8: Be Conscious Of Your Words

Many people mean well, but not thinking through what they say can mean hurting someone’s feelings. It isn’t about being politically correct, it’s about being respectful and showing empathy.

Avoid assuming how a family or child likes to identify. Most families identify their child as their child who has a special need. Their child isn’t defined by the need. It isn’t uncommon for people to assume, and just use a diagnosis as an identification.

It can also depend on how a family sees a diagnosis. There’s no right or wrong way to view or feel about your child’s diagnosis. Some families see autism as simply a characteristic of their unique child and might use wording such as ‘an autistic child.’ While some children and families might use that wording, others prefer the child to be recognised as an individual who happens to have a diagnosis of autism – ‘a child with autism’. It’s always good to ask parents if they prefer certain language.

Avoid saying a child was or is ‘damaged’ by something. We have many theories for a variety of causes for different special needs. However, referring to a child as damaged, imperfect, and so on, can imply the child would have been better off another way. We all have our unique paths in this world; a different or even difficult one isn’t necessarily a bad or damaged life. No matter how challenging children’s special needs can be, their parents love them for who they are.

All families are unique; all children are unique. But families with children who have special needs have some unique challenges. Take time to build a relationship, be respectful and kind, and always trust that parents are the experts on their own child.

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Maria Silver Pyanov is a mama of four energetic boys and one unique little girl. She is also a doula and childbirth educator. She's an advocate for birth options, and adequate prenatal care and support. She believes in the importance of rebuilding the village so no parent feels unsupported.

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