When you are a parent, lots of topics come up among friends that can be difficult conversations to navigate. “How do I help a friend who miscarried?” “Is there a way to comfort a friend who lost a parent?” “What do I do to help my sister whose child has a disability?”
There is no way to avoid these events in life. As a mother of a child with some fairly severe emotional/behavioral diagnosis, I can speak to the very real struggle of raising a special needs child. It can be very isolating, guilt-filled, and nearly paralyzing at times.
After interviewing hundreds of parents who are raising children with special needs, some of whom are in my ‘tribe’ and others I’ve never met face-to-face, the needs expressed were resoundingly similar.
Here are the top 6 things that parents of special needs children actually need.
See Things Through My Child’s Eyes
The world is harsh are critical, but imagine what it might feel like when you have a diagnosis that says that your brain and your body operate completely against what society deems as ‘normal’. A child with sensory processing disorder, it has been said, feels like world as if they are constantly wearing a terribly itchy sweater. That uncomfortable feeling can be felt through sound, touch, sight, or taste, but it is always felt. It never lets up. A child with ADHD cannot simply slow their own thinking down long enough to focus on completing a task, remembering directions, or calming their body parts from constant movement.
One desperate mother noted, “My number one [suggestion] would be for people to start trying to see things as my son [sees them]. Imagine what he is experiencing, going through, being subjected to mentally, physically, emotionally, socially, psychologically, and imaging how he feels and thinks.”
“I used to work at an agency that works with people of all types of disabilities. I loved a workshop that helped us to see, touch, speak and hear a little like people with disabilities. We put 3 large marshmallows in our mouth, two sets of tube socks on our hands, and a pair of glasses with a thin coat of vasoline on them. They played music really loud, and gave us instructions on how to pick up a cup and drink from it with those marshmallows in our mouths, and we had to cut play-do into a heart shape. Man did that open my eyes to my son’s life with Down Syndrome, Autism, ADHD, Intermittent Explosive Disorder, and Conduct Disorder,” another mama lamented.
One mama added, “First of all love and support but what I really want is for my family and friends to try and put themselves not in my shoes, but my daughter’s. Its helped me understand my daughter better by trying to understand her feelings and what is the best way to respond verses responding how I want to.”
Unconditional Love and Support
Unconditional is the operative word here. I cannot determine when our son will act out. I have no way to know whether or not he will attempt to participate in an event or even a daily task and have a meltdown. Therefore, I need to surround myself with people who are willing to be in my tribe, even when things are less than sunshine and rainbows. In fact, I need them to love me through storms when they won’t let up.
One mama put it that, “I would ask for respect/understanding/lack of opinions. I have often found that when I am talking about diagnosis or medication or treatment plans or something along those lines, everyone has an opinion and most of them are questioning. I think, at least for me, it is a huge struggle mentally and emotionally to take in all the professional diagnoses and opinions and options. It’s an even bigger struggle to then decide what I think would be best for my child based on that information. When talking to loved ones, and them interjecting an opinion or questioning the doctors/specialists and or my decisions, it makes it so much more stressful.”
Another loving parent added that they needed, “space, a silent nod of respect during a meltdown, [and] encouragement.”
Stop Pouring On The Guilt
Trust me when I say that most parents, especially those parenting challenging children, do not need extra help feeling guilty. We already blame ourselves daily for struggles our children have or for losing our cool and yelling at them.
One mama said, “[I’d love] to have friends and family know that we will not be at every function and it’s not fun for us to miss out. Don’t be angry. Send pictures, call us, and help us feel that we still matter!”
This is so crucial. The feeling of isolation as a special needs parent is a very harsh reality for us. We need you to understand that if our child is having a hard day, we are choosing to miss your birthday party because it would only make things worse for them. The over-stimulation that comes with balloons, music, and sugar-filled treats can be too much for our kiddos, even on their best day. So please don’t make us feel worse. We want to be there, but parenting our children requires difficult decisions to keep their best interests in mind.
Stop Giving Advice-Instead, Ask Us Questions Without Criticism
If you stopped reading the sub heading at “Questions”, go back. We need you to do this without criticism. We get it. You have your opinion, and that is okay. What is not okay is to force it on us or subject us to a barrage of your feelings on a choice we made for our children. You aren’t their parent. And guess what? We’ve made it this far without your instruction.
One parent put it that they needed, “For people to understand that the child with the disability is not going to respond to things like discipline the same as their child without a disability. I’d like people to stop being judgmental and assuming that the child’s behavior is always in their control. Stop blaming the child’s “bad behavior” on poor parenting. You can’t “beat” ADHD out of a child. They are still going to be impulsive no matter how many times you hit them after they do something wrong. Also, to stop questioning if the child really has a disability like ADHD just because they don’t appear to look different. People need to understand that a parent knows very early on that something just isn’t right, even if they can’t identify it yet. Stop looking at the child as bad and understand why they act the way they do. Have some empathy if you have a friend/relative who has the “bad kid” [and] try to learn more about their disability instead of making assumptions based on what you don’t know.”
Another mama said, “Don’t give advice unless the parents ask for it and don’t question or criticize their parenting skills.”
Every parent, no matter how their child behaves, has been on the receiving end of unsolicited advice, whether from a family member or an unbiased lady in the grocery checkout line. Regardless, we struggle with our parenting decisions, discipline strategies, and consequences hundreds of times a day. I can assure you that we are willing to try almost anything, but don’t assume we haven’t already. Children with special needs will not respond the same as a ‘normal’ functioning child so please reserve your judgments. We just don’t have the mental space for them.
Give Us Relief, Without A Side of Judgement
For me, personally, this is the most important way you can, as a friend or family member, support a parent of a child with special needs. Finding a reliable and trustworthy babysitter is difficult anyway. Trying to find someone you trust to keep your child when you leave not knowing how they might act is next to impossible. Tracking down someone you trust with your child’s strict schedule, routine, or medications can be daunting and many parents simply write it off and resign themselves to being prisoners in their own homes.
One mom, desperate for relief said, “When I’m reaching my limit and ready to have a mental breakdown, instead of someone saying it’s gonna be ok, someone just take my kid and let me take a nap!”
Another parent said they needed, “Time away from said child without a phone call 10 minutes later…..”
“[It’s] so hard to have a social life,” a tired mom explained.
It is hard to fully explain to someone the level of exhaustion that comes with parenting a child who cannot articulate their needs or emotions, one who suffers from bed wetting or night terrors, or one whose meltdowns require you to restrain them so they do not self-harm or hurt their siblings. It goes so far beyond simply needing a break or wanting a date night. This is pure survival mode for most parents.
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Great advice! I was a special needs child, and I remember my mom telling me about a daycare center that rejected me because I was “too unruly” for them. This rejection has stayed with me until now. I agree that we should give both the parent or parents of the child and the child themselves unconditional love so that they know they are accepted and loved. I think it would go a long way to positively impact not only the parent, but also the child.
This gives me a completely new perspective. Thanks! I can’t imagine how tough it must be and I agree when you say don’t give us advice or criticize! This goes for people who have ailing parents! We have taken better care of them for years and without anybody’s instructions. I can’t imagine how hard it must be to trust others to babysit the child. I think every individual should learn more about what should be done so that when we have special needs child around anyone can take care of them. I know my school was generous to special needs children and admitted them to school where other schools with “normal kids” would reject them. And we always appreciate what we learned staying by their side <3
Such a thoughtful advice. It is always easy to judge others without experiencing all of it yourself.
I will keep these in mind in future interactions.
I’m isolated whether I attend a function or not. Missing events is so hurtful because once again we’re left out. We’re left out when we attend functions as well, special needs kids or not. We become the party mom as we watch our kids and everyone else’s as they socialize. Our kids have unique situations they mostly not all of the time don’t fit with the typical world of SAT, tutors , high level sports etc etc. On the flip side, special needs kids fit in a big box and someone else’s issues may be more severe or less severe than yours, which means people get offended easily. It is truly awful on both sides of the camp which is why we isolate, there is no safe haven.