20 Things Parenting a Child With Special Needs Has Taught Me

20 Things Parenting a Child With Special Needs Has Taught Me

20 Things Parenting a Child With Special Needs Has Taught Me
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Each day provides an opportunity to learn more about my inner self, about relationships and about life. Many of these lessons were learned when my youngest son, who has autism, was very little. His needs during the time could certainly be described as special. I love and respect my son and I want to do whatever I can to support him and help him to thrive. That’s when I slowly began to develop some guiding principles I still try to turn to whenever I find myself in difficult situations.
I may have learned these things, but it doesn’t mean I’ve mastered them. I’m still a work in progress. Here’s my list of things so far that parenting a child with special needs has taught me about life in general:
1. Beauty can be found in unexpected places.
This first one may sound trite, but it’s an essential truth I cling to. Life can present us with struggles, yet it’s in the midst of darkness we truly appreciate the light. During our journey, I’ve learned about strength, love, perseverance and forgiveness. I’ve also met some amazing people along the way.
2. Embrace what makes life unique.
The world is full of opportunities for adventure. It’s also populated by a gloriously diverse people who have a lot to teach us and deserve our respect and acceptance. Different is awesome and can provide a refreshing new perspective on things. In my house we call it “not boring.”
3. Parenting can be hard sometimes.
Special needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean our children are a burden, because we love them. However, full schedules, perpetual problem-solving and things like constant medical concerns can make us weary.
4. Ask for what you need.
The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask so speak up. Sometimes, we require assistance to get through things. It’s not selfish or weak to ask for help.
5. There will be periods in our life where it feels like we take more than we give.
This can be especially hard for caregivers to accept. Remember our worth isn’t defined solely by what we do for others. There will be other times in your life when you’ll be in a position to help someone else who is in need. The scales are never balanced.
6. You’re stronger than you think.
“I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I’m immensely impressed by the strength and resilience displayed by my son after witnessing some of the obstacles he has had to overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it’s important to remember this next one …
7. Self-care is essential.
Exercise. Try and get enough sleep. Eat healthy. Find what helps you relieve stress and then somehow find time to do it. Clear the schedule. Unplug. And for goodness sake, pamper yourself once in a while. You deserve it! You need it!
8. Be honest about your struggles.
Allow yourself to feel even the negative emotions and talk about them. Those feelings are there to guide and teach us, and it can be damaging if you simply push them back down inside. Find people who are safe sounding boards and vent away.
9. Keep moving forward.
Let it out, but then let it go. Try not to get stuck in a negative place because it can warp your view of your situation.
10. Count your blessings.
Every day. When you constantly focus on what you don’t have, you can lose sight of what you do have. Instead, try to be positive. Gratitude will help carry you through.
11. There is danger in comparison.
Don’t look at your life through the lens of someone else’s. Their life isn’t better or worse, it’s just different. Besides, you don’t know what struggles they face behind closed doors. The soccer mom with designer clothes and seemingly perfect children may have had a really horrible, difficult day and just hides it really well.
12. Don’t begrudge someone else their difficulties because yours may be different or seem worse.
This isn’t a competition to see who endures the most pain. Everyone struggles in life. Be sensitive to one another.
13. Appearances aren’t always what they seem.
Give people the benefit of the doubt. Try not to make assumptions without knowing the whole story. That meltdown from a screaming child in the grocery store may be the result of sensory overload and not a “bratty kid and bad parenting.” If you can’t say something helpful, then it’s best to keep your opinions to yourself. Keep your mouth shut and don’t judge. If someone else says something you find hurtful, don’t be quick to take offense. Instead, try to discern their heart and intentions.
14. Remember everyone responds differently to stress.
Unexpected experiences can make some people more compassionate, but it can make others appear hard. As you go through life, you may find you switch back and forth between these responses.
15. Don’t be afraid to say no.
Establish boundaries and save your energy for events and activities that will have a positive effect on you or your family. If something would be too difficult, then decline the invitation. Don’t set your yourself up to fail by getting into a situation you know would be problematic or overly stressful. The well-being of your family is your first priority, and those who really care about you will understand that.
16. Cut out the negative people and add in the positive.
If a person is draining your emotional energy or doesn’t “get” you or your child, it’s OK to invest less time in them. Find a community of people who will encourage and care for your family. It’s also helpful to get input from multiple informed sources and experts. Build a team of individuals who you trust.
17. You are your child’s best advocate.
Trust your instincts. Don’t be afraid to fight for accommodation in the schools or ask a doctor for a second opinion. I know many parents who have circumvented problems by being persistent and questioning the experts.
18. Love and accept people for who they are, rather than who you expect them to be.
That includes acceptance of any sort of medical diagnosis your child may receive, but don’t allow the diagnosis to limit anyone’s hopes for them. If you are a parent, remember your child’s journey is their own unique adventure.
19. Celebrate every new milestone and accomplishment.
Be sure to tell your child how proud you are of them. Take time to rejoice in their growth and achievements, no matter how small they may seem to outsiders. Celebrate your own victories, too!
And finally,
20. Be kind.
Enough said.
A version of this post originally appeared on Seriously Not Boring . You can also find Jennifer Bittner at her  Seriously Not Boring Facebook  page.
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Autism is a type of neurodiversity associated with characteristics like passionate interest in specific topics, difficulty with typical communication methods, sensory sensitivities, and using repetitive motions (sometimes called stimming) to regulate their experience. There has been so much discussion in the disability community, especially in the autistic community, about functioning labels. That’s why Tumblr user levianta created a set of five images to explain what we mean when we say autism is on a spectrum. Below, I’ve included the images, as well as an explanation of what each means to me as an autistic person. Autism has always been perceived as a spectrum. When most people think of a spectrum, they think of the graphic below — a horizontal line that runs from “low-functioning” to “high-functioning.” Everybody is supposed to fit neatly in their own dot on the spectrum. But, that’s not how it works at all. The second graphic is something that is becoming more common in the neurodiversity world. It illustrates how we can be very functioning in some ways and not as much in others. The characteristics reflected in this diagram include depression, fixations, abnormal/flat speech, noise sensitivity, social difficulty, anxiety, abnormal posture, poor eye contact, tics and fidgets and aggression. With this graphic, everyone can map their own personal spectrum. I love this set of graphics. I have been labeled “high-functioning.” I’ve been stuck on the far right end of the linear spectrum by professionals and government agencies my whole life. I present very neurotypically at appointments and interviews, so much so that I have been denied services I desperately need. I struggle in so many areas. My current mental state right now proves that more than ever. I’m suffering from one of the most severe burnouts in my life, purely because I try to live up to the label of “high-functioning” every day. It is something I have been coached and trained to do and something society expects of me. I am very lucky to have an amazing support system, but masking is wreaking havoc on my life. If I mapped my own autism based on this graphic, I would say I’m “higher functioning” on the verbal and social skills side of the map, but pretty low on things like anxiety and sensory issues. The third image (pictured below) says, “No two autistic people are exactly alike, but we shouldn’t be reduced to ‘high-functioning’ and ‘low-functioning’ stereotypes either,” and includes two different wheels with different skills and struggles highlighted. The first wheel represents Tumblr user levianta‘s autism, and the second wheel represents their brother’s. Below both wheels it says, “we have the same ‘amount’ of autism, just different symptoms.”   It’s worth mentioning that autism is sometimes listed as a “disorder” with “symptoms” in medical definitions, but it is not something that needs “fixing.” People on the spectrum simply experience the world differently than typical people. Even still, I loved this part of the graphic because I had never thought about autism that way, but that’s how I’ll view it from now on. I have often felt that I wasn’t “autistic enough,” except maybe on my bad days. My spouse and I would even call those my autistic days. It was freeing to realize that every day was an autistic day. Just because I was stimming a lot, did not me I had a bad or difficult day. It’s taking a lot of work, but I can let myself be autistic in public and around people. And being autistic equals being myself. The next image says: “the spectrum doesn’t look like this” with four people lined up, gradually becoming redder (symbolizing the “more autistic” idea mentioned above), while the final image says “we are far more,” with four technicolor people lined up (symbolizing how different every autistic person can be!). These graphics are so important because they empower autistic people who are considered “high-functioning” and “low-functioning.” I think we often base our functioning levels on whether you are verbal or not. But there are people who can’t communicate in a traditional way that do things like go to college, which I don’t have the capacity to do. People who are considered “lower functioning” can achieve things I could only dream of. By labeling us on a straight line, it hurts the people who can’t live up to their label and dismisses the talents and skills of those who are considered “lower-functioning.” Let’s empower every autistic person!
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How ABLEnow Helps People With Disabilities be More Independent
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Why It’s OK, Even Necessary to Self-Diagnose in the Autism Community
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8 Wearable Stim Toys for Autistic and Neurodivergent People
Stimming is a necessity in the lives of many neurodiverse people — including autistic people, people with ADHD and those with anxiety. Everybody stims in some way or another. I love having easily accessible wearable stim toys and things for my sensory needs with me at all times. There have been many times when I start to feel overwhelmed, need to release excess energy, or just feel the need to stim, and digging around in my bag for a stim toy is just too much for me. Wearing a stim toy means it can be fidgeted with throughout the day, it can be discreet in workplaces and school, and it can help with accessibility during meltdowns. Plus they look super cute! Here are some ideas for wearable stim objects or toys: 1. Mindfulness Fidget Bracelet Old Soul Project Bracelets are perfect for fidgeting, mindfulness, and help regulate the stress from overstimulation and under-stimulation that people with ADHD and/or on the autism spectrum often experience. The bracelet comes with ideas for exercises and ways to stim with the bracelet. Their site is also full of how-tos and great information. 2. Push Pop Fidget Bracelet I love those push pop fidget toys but I never have them handy when I need them. I love the idea of having a push pop bracelet on my wrist that’s easily accessible. You can find these in all sorts of colors and styles on Amazon. 3. Fidget Necklace Have you ever worn a necklace and played with it? Well, some necklaces are specifically designed for stimming. Check out Stimtastic’s stim jewelry collection. Their Concentric Circles Necklace has three different beads that spin independently of each other you can roll or spin just one or all three together. 4. Fidget Key Rings Having stim toys that you can easily access on your keys is perfect for autistic and neurodivergent people to use while out and about. There are push pops, pea poppers, and gear shifters that you can put on your key rings. Plus keyrings can be pretty fun to fidget with. 5. Chewable Jewelry Many autistic and other neurodiverse people stim through chewing on things. This can be chewing on their fingernails, clothes, etc. Having a chew necklace can be a great way to stim and stop destroying our nails and favorite t-shirts. One of my favorite companies is Chewelry. You can usually find their products on Amazon. Stimtastic also has some great chew necklaces. Most companies have different textures and hardness; you might want to try a couple of different variations out and decide what you like. 6. Spinner Rings Spinner rings are really popular for anxiety, but are great for fidgeting and stimming for other reasons as well, such as ADHD and autism. I wear a lot of rings and I often find myself fidgeting with them. You can find spinner rings on Amazon and beautiful handmade spinner rings on Etsy like this one from BlackFeatherDesignUK. 7. Hair Ties If you have long hair, you probably always have a hair tie with you. Hair ties can be a wearable stim. Phone cord hair ties can be good for this because of the texture, and they’re fun to fidget with. However, everyone has their likes and dislikes with texture. Try them out to find out what feels best to you. 8. Bonus — Earplugs While earplugs are not necessarily stim toys, they are a great thing to always have with you for sensory issues. You can attach earplugs to a key chain or (as I’ve seen some people on TikTok creatively do with their loop earplugs),  make them into earrings.
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What Does an Autistic Shutdown Feel Like?
Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!
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Depression vs. Autistic Burnout: How to Tell the Difference
My depressive episodes and my autistic burnout episodes are two completely different things, although it did take quite a while to figure out that they were two separate entities. When I was younger, they blurred together a lot. I wasn’t able to verbalize the difference until recently. In my depressive episodes, all I want to do is sleep. Napping is the perfect way to diminish hours until it is time to go to bed again. I cry so much, usually loud gasping sobs. I also will talk to myself while crying, mostly nonsensical sentences. With burnout, I basically become paralyzed. During burnout, all I can do is sit somewhere and stare off into space. I don’t even feel like sleeping. I just become non-verbal and stare at the wall until a human comes along and tries to snap me out of it, although I am not always able to. If I’m by myself, it’s even worse, because I just have to sit there, waiting for it to be over. It’s like my meat puppet is there, but my soul is gone. I am able to cry, but it is usually just silent tears running down my face. Burnout is one of the scariest parts of being autistic, for me. It is terrifying being unable to even twitch a finger. There are differences in what causes the depression or burnout. I feel like my depression is more of a mental state and my burnout is when I just completely shut down. My burnout occurs most when I am done trying to exist in the scary human world and need a break. It happens a lot when I feel lonely or when I am going through a PTSD experience involving my abusive parents or ex-spouse. It also correlates a lot to when I feel like my social skills are inadequate and that no one will ever want to interact with me. One thing that is the same in both burnout and depression is the mean voice in my head. It is a constant litany of self-hate that enjoys reaching into the deepest depths of my mind to find whatever material it can use. The mean voice delights in bringing up whatever is necessary to keep me in a state of misery. Another similarity is the urge to kill myself. Both depression and burnout hurt a lot physically and mentally and my usually passive suicidal thoughts take a turn for the worse. The last thing they have in common is the occasional yo-yo effect. I will find myself being terribly upset one moment, better the next, and right back into the sadness. That makes it even harder to cope, because I never know what or when is happening next. There aren’t many tips I can give for dealing with either depression or burnout, other than to just try and get through it. I have made plans while in a good state of mind as to what to do if burnout or depression strikes. I have a list of activities, such as knitting and reading, and a list of people I can go to if I need help. I tell myself a lot that each minute that passes is another minute you managed to survive. It might be the smallest triumph, but at least it is a triumph.
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