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20 Things Every Parent of Kids with Special Needs Should Hear

20 Things Every Parent of Kids with Special Needs Should Hear


There may not be anyone else with the same constellation of symptoms as your child but there are people with similar challenges. Find those people. I have never met anyone with all of these same challenges as my kid but I have a strong network within each separate diagnosis. We have made wonderful friends and have found—and I hope provided—a great deal of support within each of these. I just have to pop onto one of my Facebook groups and I’m immediately reminded, I’m not alone.


We are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for. That entails asking friends or family to bring a meal by every now and then, or going for a pedicure, or a date night, or whatever else you enjoy doing. Whatever makes you feel special and taken care of, take the time to enjoy it, you are worth it!


No one is perfect. We all make mistakes. We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment, that you were sure was on Tuesday but apparently was on Monday. Maybe your kiddo had a tough day at school and just needed the night off. Who knows? But beating yourself up isn’t going to change the situation, so try to move on.


You may not leap buildings in a single bound or run faster than a speeding bullet but you are a superhero none the less. Every day, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse the medicine. You hold hysterical children during horrendous medical procedures. You deal with tantrums and meltdowns. And most often manage not to have a tantrum or meltdown yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You are a therapist, nurse, doctor, friend and confidante. You are no regular parent.


Having sat in on several therapy sessions, I have been frustrated by what I thought was premature discharge from therapy on more than one occasion. Since then, I have grown, I have learned and I have come to understand. For children, therapy is play and play is therapy. What I mean is that the best therapists find ways to make my son engage in challenging activities that he otherwise would have balked at, by making it a game that he wanted to play. We took a page from their book and did the same at home.


Yes this is different from number five. After discharge from therapy, we sought extra curricular activities for my son that would offer therapeutic benefits. He played sled hockey, runs on a track team, learned to shoot archery and takes swim lessons. All of this is therapy. He’s learning, having fun and getting stronger. Win, Win and Win!


We super parents tend to be fairly busy and often over scheduled. However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your kids. Read to them, snuggle with them, engage with them with what’s important in their worlds. Make memories outside of hospital walls.


You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood. Know that you are doing your best, remember number three. I am guilty of agonizing over these types of decisions, they can become really overwhelming to me. Talk about your conundrum with others who get it and trust yourself to make the best decision. Make it move on and once it’s made don’t rethink it. Easier said than done, but worth a try!


Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices. You will do your best but you won’t always get it right no matter how many sleepless nights you spend agonizing over how to handle a situation.


Yes, you will screw things up sometimes despite the very best of intentions. No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.


It can also be extra rewarding. Make us extra passionate. And will almost always make life extra interesting. With the challenges come the rewards. Sometimes you have to search your heart for the rewards but they are there if you look for them.


For those folks who are trying to win a marathon, there are no breaks. If you want to stay in the race, you eat, drink and even pee while running. But our marathon will go on for the foreseeable future and beyond. So remember, you don’t need to win, just make it to the end. The guy who comes in last place in the marathon, he took breaks, he stood and drank some water, grabbed a quick bite and used the porta-john for his business, then got back on the road. Give yourself those moments—however brief—that are for yourself. Goodness, you might even get to pee in peace every now and then.


Don’t let being the parent of a special needs child create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself.


Certain things get under my skin, we all have our buzz issues, one of mine is people first language. But if you’re not careful, you can become overly sensitive to so many things that people start to avoid your company. Many colloquialisms like “I almost had a stroke”, or “I nearly had a heart attack” are disconcerting to parents whose children have in fact had a heart attack or a stroke. However try to remember that people are not making these comments to offend or upset you.


Brag about those accomplishments that might seem small to others but are huge for our kids! Our kids develop on their own clock, they learn many skills late and some they never master. A wiggled toe that couldn’t wiggle before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.


I know how hard it is to hear from parents that their child six months younger than yours is walking and yours isn’t. Or dealing with the well meaning stranger who asks why your 2-year-old is scooting around on their butt rather than being up on their feet. Try to remember that these people lack the context that we are constantly embedded in. Explain, teach, be patient, raise awareness amongst those who just don’t get it. And remember, typical parents deserve the right to brag too and their pride at their child’s accomplishments is not meant as a knock to your amazing kiddo.


This is another challenging one folks, but worth the work. All kids are different, typical, or with extra challenges and they will grow and develop at their own pace. If a developmental milestone isn’t met as you think it should be, certainly talk to your child’s doctor. Comparing, siblings, cousins, kids in the daycare class, or even comparing kids within the same disability type rarely serves to make you feel better. Your child is unique, and will have their own individual strengths and challenges.


You know the one who clearly spent 10 hours creating the amazing snack shaped like an animal with licorice whiskers. The one who sends adorable treat bags for every holiday. The one who finds the coolest gifts for the teachers every year. And whose child is always dressed in the cutest outfits that somehow never get dirty. If that’s the mom you are led to be, more power to you! However, I have found that there are always enough of those mom’s in my kid’s classes to keep them in cute snacks and treat bags. Since I have bigger fish to fry, I let them have all the glory!


Marriage is hard work, period. Parenting is hard work, period. Parenting a child with special needs, is especially hard work, period! For those of you who are married or in a relationship, make time for that relationship away from your children.


You know your children best. Doctors, teachers, therapists are all fantastic resources but if you don’t feel like you’re being heard, or your child’s needs are being met, it’s very reasonable to get a second opinion. Don’t be afraid to fight for your child and their needs. While the professionals are experts in their areas, you are the expert on your child.

Reference: Dr. Darla Clayton, PsyD, The Mobility Resource

When the Scariest Part of Parenthood Is Socializing With Other Parents | Parents Survival Guide

When the Scariest Part of Parenthood Is Socializing With Other Parents | Parents Survival Guide

A planner by nature, I anticipated my babies’ arrivals by reading all the books, making all the lists, doing all the research, and generally convincing myself I had made a terrible mistake. Thankfully, both of my children survived their earliest years without much trouble, and I relaxed a little. However, just when it seemed like we were finally figuring things out, they started school.

At first, the great challenges of school included trusting the classroom educators, acclimating to a different routine, and remembering where to find things such as the online school calendar. But as the kids moved from their rural Maine Montessori years (from ages 3 to 5) to the Chicago Public Schools, things changed.

A lot.


Of course, the kids met our new challenges with resilience and grace, quickly falling into a new normal. I, on the other hand, have had a bumpier go of things.

You see, as an introvert, the scariest part of parenthood for me is socializing with other parents. Little by little, I’m figuring out ways to manage my discomfort, but I’m discovering there’s no quick or fast solution. Here are some of the challenges I’ve faced as an introverted parent, and what I’ve learned.

I am the kind of introverted working mother who can fake social ease just enough to keep the red flags lowered — as long as the socializing comes in short bursts, in small, familiar groups (one-on-one is ideal), and it’s extra helpful if I have a defined purpose for being there (i.e., if it’s my job). Alternatively, opened-ended and undefined social situations are, for me, the equivalent of the boogie man.

My kids are now six and seven. They are sweet, social people who enjoy playdates and group activities. They long to be in the mix of their school and neighborhood communities — after-school events, potlucks, and street parties. So I say yes to some things, and we keep showing up. We show up, the kids find their people and take off with their little wolf packs. I linger at the edge of the activity, not totally unlike a lone sock hanging limply from a clothesline.

Recently in therapy, I described my social-anxiety-while-among-other-parents as a middle school regression. It’s especially prevalent with other mothers. If faced with a large group of mothers who are catching up with each other in chatty clusters of designer leggings, sporty vests, and baseball caps, I immediately feel like I am 12 years old, standing at the front of the middle school cafeteria, feeling very Asian (which I am), wearing the wrong clothes, and wondering where to sit. To be honest, I skipped lunch for most of the middle school and high school and instead read peacefully in the library.

But it’s no longer just about me.

Before I continue, I have a few disclaimers. I always have disclaimers.

  • I’m sure the other mothers/parents are fine. My own social obstacles are not a judgement on them.
  • I am not looking for sympathy. This is simply how I am, and devising strategies for navigating this is my own inside job.
  • I could avoid these situations, but my own introverted personality shouldn’t prevent my kids from participating in their communities.
  • It’s important for my kids to see me doing things that I find hard and uncomfortable.

When I spoke to my therapist about this particular issue, she reminded me that many people struggle to find their place among other parents. On one hand, this is a good reminder that we all have our challenges — introverted or not — but dealing with it sometimes calls for very different game plans depending on the individual.

The other day, I read this article in The New York Times called “Making Friends With Other Parents Is Like Dating.” While I found it interesting, the tips didn’t resonate as much as I had hoped because I’m not trying to find my next BFF. The article touches upon the awkwardness and uncertainty among peer parents, but it encourages friend-making. I do enjoy my friends and occasionally developing new friendships, but my main goal is to feel at peace when required to share space with other parents.

It’s not easy being an introverted parent, but learning to look at things a little differently has helped me when I’ve found myself volunteering in my kids’ classrooms, at a mother-son dance, or at a school potluck. If you’re an introverted parent, I hope these three things help you, too:

This is easier than it sounds because unfortunately, I do care what people think of me. I’m not sure why this is, but whatever the reason, the best way forward, as author Anne Lamott reminds us, is bird by bird. And as Glennon Doyle reminds us, we just have to do the next hard thing.

So if my strongest instinct is to bring a book and read quietly while the kids are playing, I should read my book. Yes, it makes me fairly unapproachable and perhaps, to some, a little rude. But if I’m not causing harm, if I’m keeping an eye on my kids, and I don’t feel like practicing the small talk, then really, I should be able to read my book.

I am the mom who prefers to be with the kids. The kid space feels down-to-earth, authentic, and comfortable. I find myself, at times, in the center of a kid circle. My kids will come to tell me something, their friends will follow, and the next thing I know, we are in a discussion about their game, their classroom, or a funny joke someone just learned. Perhaps I am not intimidated by elementary school kids because they are usually the only ones who are shorter than I am. But it’s probably because they are the most fun.

As introverts, our minds are always going, imagining what might be coming up next. So this point is possibly the hardest one for me. However, if I don’t have any expectations for whatever I’m doing, I can relax a little. This is more of an overall life strategy, but it can work well with other parents. If I do not expect anyone to interact with me in any specific way, if I don’t expect to feel like a weirdo while doing my own thing, if I don’t expect any event to be great or terrible, it’s easier to find moments where I can be present.

Recently, I was sitting on a bench, listening to a podcast, watching my son play at the park. Another mom came up and sat next to me, commenting that sitting quietly seemed like a good idea. So that’s what we did — we sat peacefully together, without awkwardness or expectation, simply watching our kids play. Sometimes it’s enough just to show up.

So I will. I will show up when it’s important for my kids, and I will continue to challenge myself to find my place among other parents. Sometimes it will be scary, but sometimes it might be pretty good. Most often, I imagine, it will fall somewhere in the middle. And that in itself is a valuable message for my kids: In our family, we try hard, we do things that scare us, and even when the results are average at best, we should still feel okay about it.

Reference: Sara Watkins from Introvertdear

Why am I so tired all the time, even after a full night's sleep?

Why am I so tired all the time, even after a full night's sleep?

While it's common to feel dead tired during the day, persistent symptoms of daytime drowsiness could be linked to your sleep and health habits.

Diet and exercise can go a long way towards getting better rest at night and being more alert during the day. Balancing healthy eating choices with routine exercise can dramatically affect the way you perform throughout the day.

Try this tips that helped me cope up with my restlessness that lasted for a couple of months.

Eat more green and healthy food! You don’t really have to go vegan. Well, if you could the better. Being watchful with your diet will help naturally boost your daily energy level.

Exercise. It is recommended to exercise especially with the lifestyle we have in this age. It can be a routine exercise you got somewhere in the internet or you can just come up with your own routine. Exercise breeds energy. It is recommended that you exercise at least 30-40 minutes a day, 4 days or stretch it to 5 days a week if you can.

Aside from the energy boost, it also releases endorphins which will leave you simply "feeling good" about yourself.

Avoid fatty and processed food. These foods may fill your tummy up but they're not loaded with the vitamins and nutrients your body needs to produce the right amount of energy.

Keep your room dark and quiet. There have been studies that sleeping with lights on isn’t good for you. It makes your mind think and wonder when you’re supposed to be sleeping. If this is not possible, leave one dim light on or use a nightlight.

Ditch those electronics and gadgets. Well, no further explanation is needed for this. This may be the simplest yet hardest habit to break. It has been our habit to scroll down on our social media feeds while waiting for our sleep to come. Which is not going to happen until you realize it’s already way past your bed time. This habit tricks your brain into believing it needs to stay awake because it associates light with daytime. This deception can disrupt your circadian rhythm, which in turn leads to poorer sleep at night and feeling rundown during the day.

We need to find a way to get not just the quantity of sleep you need, but also good quality sleep you deserve! We all deserve!