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

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“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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autism comic strip explaining that autism is another way of thinking

I Made a Comic Strip to Explain My Autism Journey

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Many of my high school mentees on the autism spectrum are huge comic book fans. While teaching them about self-advocacy, I decided to create my own comic strip to explain my own journey with autism to them. Today I wanted to share it with you all.

autism comic strip explaining that autism is another way of thinking

I hope to create more comic strips in the future to help spread autism and disability awareness in our community.

Follow this journey on KerryMagro.com.

 

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Unarmed Caretaker of Young Man on the Autism Spectrum Shot by Police

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The unarmed caretaker of a young adult on the autism spectrum was shot Monday by police in South Florida.

Charles Kinsey, 47, was trying to retrieve the young man, who had wandered away from the assisted living facility where Kinsey works, and, according to reports, was blocking traffic.

In a video released by Kinsey’s attorney, Napoleon Hilton, Kinsey can be seen lying on the pavement with his arms up, attempting to get the young man to do the same. The young man sits beside Kinsey, fidgeting with the white toy truck in his hands.

“Rinaldo, please be still,” Kinsey says in the video. “Sit down, Rinaldo. Lay on your stomach.”

Moments later, Kinsey is heard appealing to police officers, who stand with guns cocked about 30 feet away.

“All he has is a toy truck in his hand. That’s all it is,” Kinsey is heard saying. “There is no need for guns.”

Editor’s note: the following video contains screaming as well as images of Kinsey with officers after being shot.

Shortly thereafter, Kinsey was shot in the leg by an officer. The incident was not captured on camera, but a second bystander video shows Kinsey and his patient being handcuffed, surrounded by officers. Kinsey’s attorney told reporters his client was made to lie on the pavement for 20 minutes before being transported to the hospital for treatment.

“I was really more worried about [my patient] than myself,” Kinsey told local news station WSVN from his hospital bed. “I was thinking as long as I have my hands up … they’re not going to shoot me. This is what I’m thinking, they’re not going to shoot me. Wow, was I wrong.”

Kinsey told WSVN the gunshot left him shocked.

“I’m saying, ‘Sir, why did you shoot me?’ and his words to me, he said, ‘I don’t know,’” Kinsey told the station.

In a press conference Thursday, police said officers on the scene were responding to a 911 call, made at 5:01 p.m., of an armed male suspect threatening suicide. The shooting officer, who has not been identified, has been placed on leave while the department and State Attorney investigate the case.

North Miami police chief Gary Eugene, who was sworn in July 12, refused to answer questions at the press conference.

In an email, Lori McIlwain, cofounder and chair of the board of the National Autism Association, told The Mighty:

Everyone at NAA is devastated by the recent event in Florida. Mr. Kinsey was clearly attempting to protect an individual with autism, and was in need of assistance… Wandering (elopement) is a common occurrence in the autism community, and individuals with autism may be unable to respond to verbal commands. We often see cases where an individual with autism elopes from a group home. These individuals are in need of understanding, support, and assistance.

She cited a photo that went viral in May, of an officer in Charlotte, North Carolina, consoling a teen with autism who had eloped from his high school, as a model of police involvement with autism.

“Individuals in our community, and the caretakers trying to protect them, should have our assistance and support,” McIlwain told The Mighty. “We encourage law enforcement agencies to visit local group homes to meet these beautiful individuals and their caregivers.”

UPDATE Thursday 7/22:

The police officer who shot Charles Kinsey Monday was reportedly aiming for the young man with autism whom Kinsey was trying to escort back to the nearby MACtown Panther Group Homes facility, according to NPR.

As Kinsey lay on the ground with his hands up, his patient sat nearby, holding a toy truck that was mistaken by both the 911 caller and police as a gun.

Believing that Kinsey’s life was in danger, the officer, described as a 30-year-old Hispanic man, discharged his weapon.

“Fearing for Mr. Kinsey’s life, the officer discharged his firearm, trying to save Mr. Kinsey’s life,” John Rivera, president of the Dade County Police Benevolent Association, told reporters. “And he missed, and accidentally struck Mr. Kinsey.”

The officer said in a statement that he “did what he had to do”, and Rivera, of the local union, characterized the case as a misunderstanding, distinguishing it from other recent police-involved shootings of black men.

“This is not a case of a rogue cop; this is not a case of police abuse,” Rivera said, according to NPR. “Listen, Mr. Kinsey did everything right. Let’s be clear about that. Mr. Kinsey did everything right.”

According to NBC News, Kinsey was released from the hospital Thursday, the same day U.S. Attorney General Loretta Lynch indicated the Justice Department was working with local officials on the case.

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Deafness and Autism: My Son Is the Needle in the Haystack

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Many people in the autism community have heard of Dr. Stephen Shore’s quote, “If you’ve met one person with autism — you’ve met one person with autism.” Autism is a spectrum disorder that manifests itself differently across individuals. I am going one step beyond Dr. Shore’s declaration by distinguishing a small but increasing segment of the autism community.

“If you’ve met one person with autism—you haven’t met any with deaf autism.”

The most recent statistics determining the national average of children with autism in the United States is 1 in 68. Within that number, there is a growing number of deaf/hard of hearing children who find themselves caught between two worlds. My 6-year-old son is one of those children caught in limbo; a member of two communities, but belonging to neither.

For deaf autistic children, the ability to communicate is strongly affected by the combination of not being able to hear what is being said, accompanied by limited verbal skills, which is characteristic of many children with a single diagnosis of autism. I learned that my son Kameron is deaf when he was 9 months old. His audiologists educated my family about cochlear implants, so we opted to have his right ear implanted first. I also began a quest to learn sign language. Even after a couple years of early intervention, he did not make any progress. He experiences sensory issues that resulted in an inability to wear the external components of the cochlear device.

On his second birthday, I discovered that he is deaf and autistic. His language is currently very delayed. At 6 years old, most typical developing kids are speaking full sentences and reading simple words. Many non-verbal autistic children are experiencing success with communication devices and tablets. Similarly, many children who are only diagnosed as deaf are using sign language. I can’t say that my son fits into any of these categories.

Communication or Assistive Technology (AT) devices require the ability to point and manipulate buttons or navigate different screens. Kameron has difficulty with finger isolation, which makes using an AT device as a mode of communication ineffective. In order to build a strong sign language vocabulary, a child must have strong imitation skills. Currently, Kameron does not have the imitation skills necessary to use sign language as a primary mode of communication.

His limited communication skills tend to alienate him from other children. He doesn’t have playmates that are not relatives or close family friends. Even those relationships are a bit forced, as he cannot share in their conversation and interests. He can’t utter the words “play with me.” A game of catch is more of a therapy session in turn-taking and imitating, contrived by an adult. Almost every step he takes during the day is shadowed by an adult, who must stand within several feet to ensure his safety.

Modes of communication is a hot topic among speech language pathologists (SLPs), behavior analysts and special educators. For children who are deaf and autistic, choosing a primary mode of communication is doubly challenging. Education programs and school placements are built around modes of communication; however, when a child does not fit nicely into one of the modes, the result is an educational program that lacks the adequate resources and programming options.

When my son turned 3, the “team” (not me) made the choice that a half-day Deaf and Hard of Hearing (DHH) program was the best placement for him. After my request for a mediation hearing, we compromised on the DHH class in the morning and class for children with autism in the afternoon. There was no one like my son in either of the classes. In fact, there was no precedence for deaf autistic children. The research is limited. The resources and programming options for children like my son do not exist. He is the needle in the haystack.

So, how does my family manage in a world not designed for those who are deaf and autistic?

Day by day, just like everyone else. Our outings may require a bit more planning and thought. One person has to be the designated aide to follow my son throughout the day. Not every activity can be modified for my son’s enjoyment, but we try to make adjustments when we can.

After several years of him struggling to wear his cochlear device, he now wears it every day. Through determination and strong advocacy skills, I was able to find a suitable educational placement where he is beginning to make progress. He is still the needle in the haystack, but his team is very accommodating and progressive in their thinking and approach to education. In terms of receptive language, he understands some simple directions such as “clean up toys” or “go bathroom” that I usually pair with my voice and a sign/picture. He can consistently respond to his name being called. He can wave “hello/goodbye.”

I still long for him to speak so I can hear the words, “I love you mommy,” but he is a master of facial and body expressions. He is affectionate and absolutely loves hugs. His face lights up when he sees me. Sometimes I am all that matters to him. To many others these things may seem basic, but they mean all the world to me.

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Stimtastic Creates Jewelry for Adults and Teens With Autism Spectrum Disorder

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Most products for people on the autism spectrum are geared towards children or their parents, so Cynthia Kim created something adults on the spectrum could enjoy. Enter Stimtastic, a jewelry and toy company that promotes “stimming” or self-stimulatory behaviors like arm flapping, rocking, humming and other repetitive movements common among people on the spectrum.

“My goal for Stimtastic and for the products we sell is to help adults and teens who stim feel not just comfortable but celebrated,” Kim, who was diagnosed with autism when she was 42, told The Daily Dot. “For an adult who has spent years or decades having to suppress their stims in certain settings, knowing that they can now walk into a meeting or classroom wearing an item that will allow them to quietly stim can be empowering.”

All of the toys and jewelry sold on the site are made for and tested by people with autism. The jewelry is affordable, with many pieces costing under $10. All pieces are designed to allow either fidgeting or chewing, and are designed for any gender who wants to wear them.

Stimtastic’s line of toys includes crocheted stress balls, chewable pencil toppers, puzzles and an iPhone case that mimics bubble wrap. For those concerned about sensory sensitivities, all of Stimtastic’s chewy products are made from a food-grade silicone, which is tasteless and odorless.

Kim wants Stimtastic to become a community where people with autism can feel comfortable being themselves. On the Stimtastic website, Kim invites visitors to contribute to the blog, submit a stimming video, comment on the Stimtastic Facebook page, and share ideas about making Stimtastic better. In addition to fostering a community, Stimtastic donates 10 percent of all proceeds back to the greater autism community. Stimtastic’s largest donation has provided weighted blankets for those who cannot afford them.

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McDonald's Went 'Above and Beyond' After a Boy With Autism Lost His Happy Meal Toys

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One Irish mother is calling her nonverbal son with autism “the happiest boy in Ireland” after receiving a surprise shipment in the mail.

Nicole Duggan, 27, is mom to Riley, a 2-year-old who has a penchant for Angry Birds-themed Happy Meal toys from McDonald’s.

So when Riley misplaced several of his favorite toys — and an hour-long search for them turned up empty — mother and son were both devastated.

Duggan decided to email McDonald’s to ask if she could buy any extra of the toys for her son, but was pleasantly surprised by what happened next.

The next morning, she and Riley woke up to a package from McDonald’s containing the burger chain’s entire Angry Birds toy collection.

“He couldn’t believe his eyes when he saw them,” Duggan told The Mighty.

 

LOVELY GESTURE – We’re speaking to Cork mum Nicole who was overwhelmed by this lovely gesture from McDonald’s for her…

Posted by Corks RedFM 104-106 on Wednesday, July 20, 2016

 

Duggan was so touched by the gesture that she reached out to local Cork radio station RedFM to share Riley’s story:

Anyone who has a child with autism knows how hard it is for them to take to new toys and it is very rare for them to find something they love,” Duggan told the station. “To most people this would be a stupid delivery to get, for my little boy it was like Christmas morning!!! McDonald’s went above and beyond for my small man and I can’t thank them enough.

For Riley, the gesture was especially meaningful, Duggan said.

“Being nonverbal, he cannot get his feelings across, so he couldn’t tell me why he was upset and it just built up and he was so frustrated,” Duggan said of her son losing his toys. “It just shows how something so small can make such a difference to a child with autism.”

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