Lamar and his son.

4 Tips for the Special Needs Parents We Don't Talk About

I am an avid reader. I read tons of books and even more blogs. As someone who considers himself to be a part of the special needs community, I read a lot of blogs about special needs families. Over the last two years, I’ve discovered there is a wealth of resources and reading material for parents who have children with special needs. As a result, the term “special needs parent” has become almost synonymous with that scenario.

I applaud and admire those parents and caregivers. They do a tremendous job and deserve to be recognized. All the parents I know who have children with special needs do it because they are parents. That is their child. That is their reason. That is their motivation.

With that being said, there is an entirely different population of special needs parents out there who can sometimes be overlooked and underappreciated. They are the parents like me, parents who don’t have a child with special needs. Instead, we are special needs parents because we are parents and we have a disability. There are many parents with disabilities that care very deeply and passionately about our children. The primary difference is that we are special needs parents because we are caregivers who at times need a little extra care ourselves.

In 2014 at age 36, I was diagnosed with ASD (autism spectrum disorder). I had a family, a career, and three children when I was diagnosed. I also had lived my entire life struggling with something that was both unknown and unnamed. From the outside looking in I was a regular guy to most, but to those who knew me well, like my wife of 15 years, there was an obvious struggle.

I have to admit that I have been blessed. My wife is an amazing woman who is extremely supportive. Since my diagnosis, we have embarked on a journey of discovery that has made life as a husband and father less complicated for me. We have learned how to allow me to slowly deal with my limitations while still being the best father I can be to our three beautiful boys.

Special needs parenting and being a special needs parent both require passion and persistence, but being a parent with special needs has taught me four ways spouses and co-parents can help provide an environment where we can participate in raising our children with the passion and love they deserve.

Lamar and his family.
Lamar and his family.

1. Understand our capacity. Life on the autism spectrum can be a roller coaster for me at times. To be honest, I’m not always sure when I will be up to performing some of the social tasks of fatherhood. Both my wife and all of our children are extremely outgoing. They love to hang out at the pool, walk around the mall for hours, and go out into the world with absolutely no agenda except to hang out all day. I have social anxiety, and I usually have the capacity to hang for about 2-3 hours before I have stepped over my limit. My wife understands that, so together we organize activities differently. For example, they may plan a trip out on the town, and I may join them around lunchtime to continue the day with them when I am ready to hang out. This strategy has worked very well for us.

2. Learn to take our cues. ASD sometimes limits my ability to pick up on social cues. Sometimes the world can be complicated, because I may miss important cues. Neurodiverse minds also have a system of social cues, and because most human communication is non-verbal, we must both realize that we are both constantly communicating through a system of social cues. My wife doesn’t just depend on me to pick up on neurotypical social cues; she has learned to pick up on my cues as well. This has been extremely important in our ability to parent together, because she is able to understand the things I am sometimes unable to verbally communicate.

3.Use creativity. Autism is a part of my neurology. My brain simply sees things in a completely different way. It is not always a matter of personal preference. While this is an unchangeable reality, the advantage is that it can enhance our parenting skills, and provides our children with a very creative environment to grow up in. In addition to our different personalities, our brains function quite differently. Our approach to
parenting must be unconventional. There are no “traditional” roles in our home, because we can’t afford to box ourselves in. Because of neurodiversity, our family is extremely creative in how we approach everything, from disciplining the kids to how we vacation.

4. Allow us to have some control. One of the misconceptions about people with autism or special needs is that they are incapable of handling certain tasks. While I admit there are a few things I struggle
with, I also have many strengths. I am not advocating for the right to be controlling, but I have found it helpful to allow the special needs parent to have major influence in their areas of strength. For example, as a person on the autism spectrum, I can be very detailed with certain tasks. Time is one of them. I am almost never late to anything, because I have an internal clock in my mind. While my wife and I do not share the same sense or sensitivity to time, we find that it is much better to allow me to have a major influence on time and schedule sensitive issues such as getting the kids off to school, getting the kids ready for bed at their designated bedtime, or even planning out-of-town trips. Being late to something isn’t always a bad thing, but being on time is always a good thing so it’s OK to let me take the lead on those
types of issues.

Parents of children with special needs answer the call every day to love and be caregivers for their children. For that I am grateful, but I am also eternally grateful for those of us who are special needs parents because we have disabilities. We too answer the call every day to care for our children, as we live life with our own
distinct needs and challenges, as well as our own distinct gifts and graces.


Close-up of hands Using a Smart Phone

When a Facebook Post Made Me Realize I’m Not a ‘Superhero’ Special Needs Mom

A few years ago, my husband bought a t-shirt that read, “May your life someday be as awesome as you pretend it is on Facebook!” We laughed and laughed.

Just about anyone with an active social media account can relate to that phrase, because we all have one or two friends whose posts seem out of touch with their actual lives. I still see the humor in the statement on that shirt, but lately, the truth behind those words really resonates with me.

Since joining the special needs community, my social network has grown exponentially. In an effort to find education and support following my daughter’s autism diagnosis, I have become an active member of several virtual communities. Where, before, I primarily used Facebook as a means to exchange casual updates with family and friends, now I find I utilize most of my time online engaging with other parents of children with special needs. These exchanges via social networking were what inspired me to share my journey through my blog.

I have committed myself to being candid about the experiences I share. I’m open in sharing about the challenges my family has faced. However, there is underlying positivity in nearly everything I write. I use my voice to show others how each challenge has been an opportunity to learn more about myself, and a chance to find strengths I never realized I possessed. While my experiences are unique, my point of view is not. Most of the other parents I’ve connected with in special needs communities utilize social networking the same way — to encourage one another and build each other up.

Sometimes, though, I believe we build each other up to a fault. When members of our communities express self-doubt, we rally together to remind them of the countless ways they are stronger than they realize (or believe). While such vehement support is needed at times, it can cause us to embrace a sort of “superhero” identity. When 50 people regularly remind us “we’ve got this,” we tend to believe them.

The problem is, we’re not superheroes. We’re parents, and all parents, whether they have children with special needs or not, are human. Sometimes we don’t “have this.” Sometimes it’s all any parent can do to clean up and get their children to bed before we break down and cry. We spend so much time reminding each other of our strength that we start to forget that it’s perfectly acceptable to break down.

The other day, scrolling through my regular newsfeed on Facebook, I broke down. I dropped the façade of the superhero mother who is completely at peace with her child’s autism, and realized I was human.

All it took to bring me back to reality was a simple post, another mom describing in detail how articulate her child (who is the same age as mine) is. I became angry and judgmental — the very things I have consciously tried to overcome. I unfollowed her and texted a mutual friend, who commiserated with me. It’s what I needed at that moment. I needed to realize that even though my daughter is amazing and I accept that she has delays, sometimes it’s going to hurt to see that some other children her age function on a different level.

Once the moment had passed, I reflected about the raw emotion that post brought out in me. The mom who shared it isn’t one of my closest friends, and I don’t see her regularly. It was easy for me to use her as a scapegoat. Was it fair of me to do so? Absolutely not. I recognized that, while the majority of her posts are centered around her child’s accomplishments, her intention was not to brag. She was proud, just like I am of my daughter’s achievements, which I frequently share. It’s all about perception.

What I gained from this experience was simple insight. Facebook is merely a highlight reel of one’s actual life and should be viewed as such. In failing to remember this, we are approaching it defensively and inviting others to offend us. A person is no more at fault for sharing her child’s accomplishments than I am for blogging about my challenges.

Image via Thinkstock Images

little boy in carseat

To the Hairdresser Who Took an Extra Step for My Son With Autism

little boy in carseat I never expected the level of service you gave us. As a matter of fact, I was quite nervous when I called to schedule the appointment for my son. You see, we had just started going through the process for autism spectrum disorder (ASD) screening. And after his first haircut at your salon, I was prepared for the ultimate meltdown, especially since he is older and has an even harder time with change, noises, new people, etc. I explained this all to you when wanting to schedule his appointment and requested someone who has worked with children like him before.

You understood. You listened to every word I said. You sensed the worry and concern about the upcoming appointment in my voice. And then, you went over and beyond like I never would have dreamed.

I knew your salon opened at 10 in the morning, which is why I asked for the first appointment. I thought it wouldn’t be busy when you first opened, so it would be the best time to get him in.

But you knew what it’s really like when the doors open to your salon. You knew that wouldn’t be the case at all. And when you offered to open the doors 15 minutes early just to let us in, I’ll admit, I was taken aback. I immediately told you doing that just for us wasn’t necessary. You were calm in your response though, with a tone of understanding when you said you would love to do that for us.

You understood he wouldn’t handle it well with other people around, children playing, all the extra noises, and the constant coming and going. I knew you were serious about letting us in early, but you also understood my concern.

We showed up at 9:45 a.m., and you were ready. You asked if there was something that would help keep him distracted from the haircut. My son loves classical music. It’s the one thing that will calm him down, and since I knew you had Netflix available, I asked if you would be willing to have “Little Einstein” on. Without a word, you immediately went over to turn it on.

My son refused to sit in one of the cars you have in your salon for the children to sit in, so you didn’t push the issue. After asking if he would sit in my lap, you put a cover on me and asked if he would be OK without one. By that question, I knew you understood the struggle my son was currently going through.

He began to relax ever so slightly. He stopped fighting you with his squirming around and became comfortable enough to actually let you trim his hair with scissors as he started to focus in on Rocket from “Little Einstein.” Any time he began fidgeting, you encouragingly told him to “watch Rocket” and “where’s Rocket?” My nerves slid downwards to a level of calm I hadn’t experienced yet when taking him to a “new” place.

That was soon to change though, as your co-worker came in.

She noticed a little girl waiting outside with her mom in front of the door. There was still five minutes till your salon was scheduled to open, but she walked towards the door anyway. You saw her too. You asked her to wait the five minutes, but she refused. The door opened and the little girl came running in. She was quite excited about picking out a car to sit in, and my son instantly became agitated because of her excitement. His whole body tensed up, and he started squirming and fighting any time you would get close to his head.

You remained calm. You never once showed any frustration, instead asking ever so politely for the mom and her daughter to bring their voices down just a little bit, explaining only that my son doesn’t handle loud noises very well. While they didn’t heed your word, that didn’t deter you from continuing on with a level of patience and understanding I’ve yet to see in someone outside our close-knit family.

The environment became increasingly louder as a couple more children with their parents walked in. You were finishing up the last bit of strays as the first little girl started whining about how she wanted to watch “Scooby-Doo.” Your co-worker went to change it, but you quickly stopped her and asked that she wait, as “Little Einstein” was the one thing that had remained the same for my son throughout this appointment. She responded back insisting that because you were almost done, it would be fine. That’s when you instructed her to come over to us.

You gave her the explanation of how my son was going through the screening process for autism and how he wasn’t doing well with all the noises and such, which is why you allowed us to come in early. You asked her to be respectful of this last request and wait until we left before changing the show to “Scooby-Doo.” I could tell she didn’t agree, but I was thankful she decided to respect your wishes.

That haircut appointment was like no other. You went over and beyond my expectations. You understood my son’s need for limited distractions and noise. You understood my worry and concern as his mom and the fight I had expected to take place. While he tensed up and fidgeted at various times, he never did melt down. You were patient when he wiggled around, and you understood how to work with him so he wouldn’t focus on the fact that you were extremely close to his head. Without prompting, you stated how you would not use the razor because you knew the noise and vibration would definitely irritate and set him off. (You instantly became my hero when you said that!) You didn’t push him to eat the animal cookies you tried to give to him.

Instead you gave him patience. You gave him space to ease into the situation. You tried to get your co-worker to understand the reasoning beyond your requests. You were encouraging to both my son and myself. You were a professional. You were a professional who wasn’t doing this job for herself, but for others. You were a difference for my son (and his ever worrying mother) and for that… I thank you. I won’t ever forget you or your exceptional level of service. As a matter of fact, I’ll be back. I’ll be back with my son when you finish the room reserved for children with special needs. And I’ll be sure to request you for his next haircut.

Family walking down road through forest

Autism Is Not the Problem

Throughout the mainstream media, we are practically bombarded with different things that are claimed to “cause” autism: Vaccinations. Diet. Environment. Drugs during pregnancy. Birth types. Gut health.

And you know what? I am absolutely sick of it.

As a wife who is married to an autistic man and a mother of two autistic children, I know the reality of autism and what it entails. I know the impact it has on my children and their education, friendships, learning, health and mental well-being – and I am talking about my two non-autistic girls, too — because siblings can be affected by autism in their own unique way. I know the impact being autistic has on my husband’s work life, daily coping mechanisms and overall functioning. I know the effect autism has on my marriage and friendships. I know the degree in which it touches my mental health and emotional well-being.

And you know what? If you don’t live it, you don’t know it.

So why am I sick of hearing about all these claims to the root of autism?

Because autism is not the problem. The problem is that our world is not set up to either embrace or accommodate neurodiversities.

It can’t be a coincidence that the people who dispute the labeling of autism, or claim that “everyone is diagnosed with autism” these days aren’t actually autistic people themselves. Because I know from immediate personal experience numerous times over that in fact the opposite is true.

And you can spin it however you like, you can attempt to sugarcoat it if you wish — but this is the core issue. People who are autistic do not need “curing” — others need their ignorance cured, and sadly, sometimes that isn’t achievable or possible. The truth is, we live in a society where difference or individuality is not always embraced; often it is feared. Children can be pushed from an early age to “fit in,” and many adults do their best to live life under the surface, unnoticed. People are generally afraid to buck the system or embrace their quirks because they are painted as “freaks” or “rebels.” The constant truth-searching and cause-finding makes families with autistic children or people married to autistic spouses feel like they are the problem. And we are not. The ignorance that surrounds autism and the fear of being slightly different, or needing things explained in a different way, or not reacting the same way to things that everyone else does — this is the problem.

Don’t think we don’t see your hushed tones. Don’t assume we aren’t listening.

Perhaps we are tired. Sick and tired of having to explain ourselves, justify our families and do our best not to disrupt your world and your perception of how you think life is. But we will keep educating and raising acceptance and breaking down those stereotypes because we know what our children are capable of, if they are supported adequately. And gaining that support for our children and loved ones is not an easy thing to do. Society, try as it may, is not set up to cater for autistic people. Not yet anyway. It is too rigid and inflexible. So that is why myself and fellow pioneers of awareness and acceptance are trying to expand that and push on those constraints. Gently, slowly, daily.

It isn’t about finding a “cure.” Autistic people are not “flawed,” and they are not “broken.” It is about acceptance and embracing the fact that many people in our world just don’t do things according to the timetable society has set out for them. It is about seeing things from different angles, and learning from autistic people. Because they have so much to share and so much knowledge to broaden our minds with; if only we could stop trying to make them do it our way and attempt to see the world through their eyes.

Lead photo source: Thinkstock Images

Close-up of hands typing on a keyboard

Self-Diagnosing Myself on the Autism Spectrum as an Adult: Where Do I Belong?

Last fall, I came to the realization that I am on the autism spectrum. It was both crushing and eye-opening. Crushing because, how would my life have been easier if I’d had help with things that are most difficult for me? Eye-opening because my entire life to this point suddenly made sense. But now I face a new challenge I know is not unique to me. When self-diagnosing autism as an adult, you may find yourself wondering, “Where do I belong?”

There are adults who have an official diagnosis, some of whom feel that self-diagnosis is invalid.

There are neurotypical adults, who you always loved but felt a disconnect with.

There are adults who have also self-diagnosed, many after their own child(ren) have been diagnosed with autism spectrum disorders. The self-diagnosed seem to be a quieter bunch because we don’t really know where we fit in the mix. Can I say I have autism if I don’t have the diagnosis on paper? I know it to be true — do I need to spend thousands of dollars getting a diagnosis that won’t do me much good on paper because I’m not looking for services?

I have received negative feedback before when I shared my experience as a parent of two children with autism. Maybe I should have disclosed that I, too, have firsthand experience with autism? That I have lived my life behind a metaphoric piece of glass? That I deal with rumination, auditory processing issues, sensory challenges, anxiety, depression and other things? Do I need to disclose this for my voice to be valid? Once again I find myself wondering where I belong.

You’re probably thinking, “Kristin, don’t let it bother you. People say mean things on the internet all the time.” The thing is… logically, I know this. But my brain also works in a way that won’t allow me to let go of things. I still lose sleep thinking about social situations that went wrong in elementary school, middle school, high school, college, etc. I torture myself by repeating them, trying to figure out where I went wrong so I do not make the same social missteps. I script conversations so I can be prepared for next time. I’ll probably be thinking about this for years.

I’ll continue muddling through, making mistakes and trying to learn. Maybe this is just another part of autism — never knowing quite where you fit.

Image via Thinkstock Images

dory and marlin hugging

When the Responsibilities of Special Needs Parenting Make You Feel Like You Can't 'Just Keep Swimming'

“Just keep swimming, just keep swimming, swimming, swimming…

Who have would have thought the Disney character I find myself relating to isn’t a princess trapped in a tower but a blue fish with a memory problem? As a mother to a child on the autism spectrum, believe me when I say we often feel like we’re swimming against the tide.

You see, support services don’t always come easy for children like my son. It can be a daily struggle getting the right help. Our family life is anything but “normal,” and we often deal with judgmental glares. It can all add a lot of pressure. I have to admit, sometimes it all feels like too much. I feel like I’m drowning. I wonder where I am going to find the strength to fight another battle for my children.

Ironically it ends up being the most mundane of things that make me feel like I’m going to sink — like the washing up for instance.

Last night I walked into the kitchen to face a mountain of dirty dishes. I took one look at it all and immediately felt defeated. Defeated by the chipped bowls and coffee-stained mugs. I slammed the door muttering some obscenities I won’t repeat here and stomped off to bed in a right old sulk.

But do you know what? When I tentatively opened the kitchen door this morning, that mountain of dirty dishes wasn’t half as bad as I had thought it had been. My mind had been playing tricks on me because I’m a pessimist, you see… always thinking the worst.

What I should have done last night was said, “So what!”

It’s quite freeing really, going with the flow. And when I think about it, more often than not a positive can be found in most situations. Even leaving the dishes.

So what if I go to bed with pots in the sink? In the grand scheme of things does it really matter? No is the answer to that because my hubby might give in and buy me that dishwasher I’ve been after for months if I let them pile up. Tactics that is!

So what if I’m not one of the seven million people watching Sunday night feel-good TV? I can fast forward the ads when I watch it later in the week anyway. That equals happy days.

So what if my morning shower happens at 10.30 p.m. at night because my mornings have to focus on getting my son to school with as little stress as possible, not the state of my hair? I mean I was never a morning person anyway.

So what if the hubby and I have to book a day off work to have date afternoon because we can’t get a sitter at night? We can often get a good two-for-one deal midweek at the local Harvester pub.

So what if we have to take family occasions in turn as big family gatherings are overwhelming? It means we get to spend some quality time with our daughters when it’s our turn to attend, and the spouse at home gets remote control rights all evening. Bonus!

So what if we holiday in the same place year after year because we need to stick to consistency? At least that way we always know what to expect so there are never any nasty surprises or cockroaches under the bed.

So what if my shoes of choice are not heels? I usually have to dash to intercept a child or remote control from flying across the room. I can’t be dealing with blisters at my age now so it’s comfort all the way for me.

So what if I have to be home by 10.30 p.m. on a night out as my son worries about me if I’m not back by the time the news has finished As I have gotten older I am glad of it, to be honest. I would much rather be tucked up in bed with a Horlicks anyway.

So what if I had to give up my job? One door closes another one opens, as they say. I would never be sat here talking to you if I was still at my day job.

So what if the most communication I can get out of my son is via text because he finds talking about how he feels face to face so hard? I can screenshot his messages and keep them forever as treasured memories… and use them to embarrass him at his 18th.

So what if I spend half of my day filling in forms and phoning people to get my son’s needs met? If I’m honest, it’s making this mama bear all the stronger for it. Grrrr!

So what if my son only wears certain socks due to his sensory issues? When we find ones he likes we buy five pairs. And that means I don’t have to spend hours hunting for those odd ones the resident sock monster likes to hide from me.

So what if we have watched “Harry Potter” 100 million times? At least now I know what spell to use in case of an invasion of Dementors – “Expecto Patronum!”

So what if my son has to go to a special education school? That’s where he is best placed to learn and grow. He’s happy and accepted and feels like he belongs there. –  And after all that’s all we ever really want for our children isn’t it?

So what if I lose some friends along the way due to our restricted social calendar? True friends will never leave my side, and I would rather have two or three true friends than 10 who just want me for me drunken handbag dance moves.

So what if we are not a “normal” family? Who needs normal anyway? I’ve learned not to believe Facebook’s perfect family portrayals. Everyone has their own story and challenges no matter how perfect their lives may appear on screen.

So what if my son is autistic? He is still the same little person, no matter what. The diagnosis may have come as a shock to me and even knocked me sideways for a little while. But my son is unique and wonderful, and I’m not going to let other people’s judgment affect how he feels about himself.

So what if people don’t agree with my choices? They are not living my life and don’t have to walk a day in my (comfy) shoes.

So maybe next time if you feel yourself sinking, try saying “so what?” and swimming away. Feel the freedom of being carried by the tide for a little while. Picture yourself floating off on an inflatable bed, cocktail in hand, and humming like the little blue fish, “just keep swimming, swimming, swimming.”

Us mums don’t always have to swim against the tide, you know. It gets exhausting after a while. So from one blue fish to another, “When life gets you down, do you know what you gotta’ do?” Just keep swimming, swimming, swimming!

Image via Facebook / Finding Nemo

This blog was written for Special Needs Jungle.

The original post can be found here.

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