Being a parent of a special needs child doesn’t come with a manual, just as being a parent in general doesn’t either. Every family, parent, caregiver, and sibling has their own path to navigate with ups and downs. As a parent of a child with special needs, do I feel as though my path has higher ups and lower downs with extra twists and turns? Certainly. But do I feel that my struggles are more relevant than someone else’s? No. There are, however, topics that I feel aren’t advocated for enough and that leave a parent of a special needs child, although unintended, feeling hurt and lonely. If these topics aren’t discussed, how is a person to know what is taboo and what is not? I am most definitely guilty of having responded to parents of children with special needs in ways that cause me frustration now. I feel terrible! It was never coming from a hurtful place though- it was out of ignorance. Walk a mile in someone’s shoes right?
I’ve found that I am continuously repeating a cycle of soul searching and rebalancing- attempting to find consistent techniques to build my resiliency towards life as a parent of a child with special needs. After all, it is a role that I will play for the rest of my life and I wouldn’t have it any other way. As I researched support, I discovered that there seems to be a general consensus for certain topics and the complete opposite for others. That, ladies and gentlemen, is what makes the world go ’round!
I wanted to share with you some main topics that I want you to know as a parent of a child with special needs so that unlike me, prior to walking in these shoes, you will hopefully be able to better navigate and understand relationships with parents of children with special needs. Please keep in mind that ‘Special Needs’ is a broad topic with varying conditions and abilities, therefore, these points don’t cover everything for everyone.
1- Some words hurt. Words like “you’d never know,” “That’s too bad,” “I’m sorry to hear that,” and “You aren’t given what you can’t handle,” along with many things in between, are hurtful. If something like that is going to come out of your mouth, go with the good old rule of, “If you have nothing nice to say, don’t say anything at all.” I will be the first to admit that I am guilty of a few of these comments myself. Often they are said with positive intentions, however it makes the parent of a child with special needs feel as if you’re trying to say that they should be lucky that a condition isn’t more severe or that their situation is less challenging than another. My husband is a champ at responding with grace to these comments as I’m left trying to digest that one of these comments was actually said aloud.
2- Ask questions! Lots of them. Let your children ask questions too! This could be a way of detouring for tip #1 as well. Instead of saying something like in #1, choose to ask a question instead. Young children ask the best questions because they don’t know any better and everything comes from an honest place. My favourite situations are when another child asks my daughter Breanna to try on her AFO braces or takes one, examining it like a dentist checking teeth. Their Mom or Dad is seen running to intervene, completely mortified that their child is touching B’s “equipment,” and I assure them that it is ok and that there is nothing offensive about the situation. Those are the greatest moments- teachable, without discrimination, and just plain real. If we don’t embrace those situations or even introduce them ourselves as adults (especially in front of our children), how do we raise awareness and encourage special needs normalcy in society. I know of a few people who choose not to make it public knowledge that they have Cerebral Palsy because of public’s perception of the disability. If we don’t use these opportunities to educate with enthusiasm, then Cerebral Palsy, along with other disabilities and conditions, will never integrate into society the way they should.
3- Be there. If a parent of a child with special needs is sharing their feelings with you or falling apart- react. Whether you don’t know how to react or you want to talk more, it is important that you communicate this to a parent of a child with special needs who is trying to share information or emotions with you. I don’t know how many times I’ve tried to share my feelings, concerns, and thoughts with close people in my life and they are either completely ignored, belittled, or compared to others. If we can’t talk to the people closest to us, who is our support system? If you are one of the many people who don’t know how to respond accordingly, then just say it! It’s better to be told that then being ignored. If you are one of those people who just cannot empathize with a parent of a child with special needs or the child with special needs, just don’t engage in conversation at all about the child and their needs.
Fortunately we live in an era where we can google feelings and follow Instagram feeds with similar interests so that we can navigate our feelings with the help of someone we’ve never even met. This doesn’t replace the value and effect of human interaction though. It’s a band-aid effect because we’re still left dealing with the feelings of hurt and loneliness when those closest to us cause us to feel that way and we continue to have to interact with them. Social media is something to get us through until the next round of resentment occurs.
4- Don’t give up on us! Parents of children with special needs often cannot go out and do things like many parents can. They don’t choose for it to be this way- it just is this way. Don’t stop inviting those parents though! When there are very few people who are comfortable watching your special needs child for hours, let alone over-night, this puts a strain on marriages and friendships. Comments about hours kept, for example, “Aren’t you up past your bed time?” and how the parents always say no are hurtful. A parent of a child with special needs does not choose which nights and days are good and which nights are bad. They don’t say no all of the time or cancel plans because they don’t want to get out of the house- they just can’t get out of the house. Maybe their time is being consumed by making or attending therapy and other appointments, working long hours to pay for those appointments, caring for their child who is having a bad day (among other siblings!), or the inability to keep it together emotionally that day. Some nights can be so exhausting that it’s almost impossible to function the next day. Some days with braces and aid required to do daily tasks, it takes forever just to get out of the house! It is important that as a friend or family member that you do not stop inviting. It is also important that you demonstrate an understanding. Parents of children with special needs need to know that they are loved and wanted.
5- A parent of a child with special needs doesn’t say no to things or choose when to make a big deal out of things because they want attention. Sorry, but saying no to your event, birthday, play date, dinner, etc isn’t about you. It’s about being the special needs’ child’s voice, advocate, and knowing their boundaries. Similar to #4 but different. The parent of a child with special needs knows their child’s limits and sees the struggles often before the child does his or herself. Events will be missed or require modifications and as parents this is one of the hardest things to do.
6- Parents of children with special needs don’t have time for selfish. There is no time or energy available to anyone who doesn’t bring something positive to our lives. Parents of children with special needs, no matter how mild or severe, do not have time in their already hectic lives for drama. This took me a while to figure our and put into practice, but it needed to happen because too much energy was spent conserving relationships when it could have been spent somewhere helpful like caring for my family and my own personal well-being.
7- Please don’t baby a child with special needs. There will always be times when a child will require assistance and extra help. There will also be times when a child needs to be left alone to do his/her thing so that he/she can feel like a normal and uninhibited child. Either the child or parent will let you know when it’s appropriate to help. Please don’t treat our children like they are anything less than what they are capable of and if you don’t know what they are capable of, back off. This is a tricky point because there are so many different ways in which people demonstrate that they care and want to help. There are also so many varying degrees of abilities that it can be hard to gauge how much it too much or too little to help. Like in #2, if you’re not sure- Ask!
8- Degrees of severity and type of condition are not appropriate causes for judgment. Mild as my daughter Breanna’s condition may be, I blame the mildness and people’s perception of it for my need to build resiliency. Breanna’s CP is mild, she is not in a wheel chair nor does she require a walker. She does, however, require bilateral AFO braces, strategies and therapy to maneuver tasks with her affected fingers and legs, and strategies to manage pain (the hardest part to watch as a parent) and cold. It seems to be the general consensus that because of this, life should be just peachy and people’s words and actions shouldn’t hurt. Whether at therapy or in conversation with friends and family, I’ve often been left to feel like I shouldn’t be required to do any modifications because Breanna’s Cerebral Palsy doesn’t affect her a severely as it does many other people.
9- A parent of a special needs child loves their children more than anything in the world and will do anything for them. Through the ups and downs there is no telling how far a parent of a parent of a special needs child is willing to go to comfort them and ease their pain. That love is no different than the love for a neuro-normal child and the bond is unbreakable.
Parenting in general isn’t easy and there is no manual. We’re always learning something and re-evaluating our strategies whether a parent of a child with special needs or a neuro-normal child. With advocacy and raising awareness we can help each other to help and understand each other.