10 Signs Your Child May Have Asperger’s Syndrome, from “Pop Sugar Moms”

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Asperger’s syndrome is a neurological disorder in the family of autism spectrum disorders. Because every child exhibits a different set of symptoms, there is no precise checklist of behaviors that must all be present for a diagnosis. Instead, there are many behaviors that may be signs of Asperger’s syndrome. Here we’ve rounded up 10 of the common behaviors to watch for, as shared by moms whose kids have the condition.

1. Fixation on One Activity

Many children with Asperger’s syndrome are preoccupied with a single or a few interests and focus on them for hours on end. As Circle of Moms member Karen R. shares: “The most common report from every parent I know . . . is that their kid fixated on something (their cars, their blue toys, their books) and played or attended [to] that thing for an outrageously long time.”

2. “Little Professor” Speech

“Typically a child with Asperger’s sounds like a little professor,” shares one Circle of Moms member, Sheila D. “They tend to have advanced verbal skills, but due to the autism aspect of the syndrome they might seem fixated on a topic that they want to talk about all the time.” Children with Asperger’s syndrome may also speak more formally than usual for their age or prefer talking to adults.

3. Difficulty Reading Social Cues

Social difficulties are another key sign of Asperger’s syndrome. Reading body language may be hard, as well as taking turns or holding a conversation. As Eliana F. shares: “Group work at school is also hard for him, as he does not understand waiting his turn or accepting others point of view.” Similarly, Colleen notes: “My son is very social, but he doesn’t engage in two way conversations. He just talks and talks.” As a result of their social difficulties, children with Asperger’s syndrome may seem isolated from their peers.

4. Need For Routine

Structure plays a big part in our lives now,” shares Wendy B. Like many children with Asperger’s syndrome, Wendy’s granddaughter needs routines. “Otherwise it is very confusing for her. So shower is at 8:30 p.m. Bedtime is at 9:30 p.m. Breakfast at 8:30 a.m., lunch at 12, supper at 6. You get the message, very structured. If I want to take her shopping, I start telling her a few days ahead — that way, it doesn’t upset her, but we still follow the same routine.”

5. Emotional Meltdowns

“My boy tends to have meltdowns when he gets overwhelmed,” shares Circle of Moms member Ylice. She’s not alone: many children with Asperger’s syndrome can’t handle routines or plans going awry. Amanda B. describes it as an “inability to control emotions when things are ‘out of order.'”

(To read more of this article, please follow the link below…)

http://www.popsugar.com/moms/Signs-Asperger-Syndrome-27332056?utm_source=com_newsletter&utm_medium=email&utm_campaign=com_newsletter_v3_11162016&em_recid=180811001&utm_content=placement_1_desc

“The Forever Years and Furry Friends”: How kids benefit from the company of “creatures great and small”, by Kirsteen McLay-Knopp

Si & Willow FY

There’s a kind of “link” in our psyche between kids and animals.  So many children’s characters ARE animals… Scooby Doo, Daniel Tiger, The Wonderpets, Canimals, Lassie, Carebears, Franklin, The Octonauts, Skippy the Bush Kangeroo, My Little Poney, Boowa and Kwala, Wags the Dog, Ninja Turtles, Pooh Bear, Piglet and their friends, Felix the Cat, Mickey Mouse and his friends, Big Bird, Kermit and other Muppets, Dinosaur Train, Tom and Jerry, Roadrunner, Boots the Monkey, the Penguins of Madagascar, Curious George, the Pink Panther, The Lion King… these are just ones I can think of off the top of my head (some of my old childhood favourites and ones our children love now), I’m sure you can think of others.  Kids’ toys, cuddly soft toys in particular, are usually animals of some sort– teddies have to be the all time favourite across generations.

Why do we draw this link between kids and the “creatures great and small” of our world?  And how does interaction with real, live animals benefit children?

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Most people would agree that children seem to naturally be drawn to animals… as adults, managing early interactions for kids in our care is important.  Very young children sometimes don’t have a healthy respect for / fear of animals.  Conversely, others may like the idea of a cat, dog, horse or whatever, but be terrified when they actually meet a real live one.  Animals, like kids, can be random and unpredictable and have their own personalities.    Protecting animals from over-enthusiastic or terrified children by teaching kids how to respond appropriately (and in ways which keep both safe ) shows our children that while we love them, we also care for and respect the creatures of our world and that animals are important.  Taking responsibility for animals by feeding them at regular times and caring for them when they are injured builds our kids’ empathy and reliability, helping them mature emotionally.

Wild Willow

This is our family dog Willow, a Stafford-shire Terrier/ Hunt-away cross we picked up from our local SPCA about 11 months ago.  (She looks pretty crazy in this photo, with her tongue lolling out).  She was three months old when we got her and a lot smaller!  Learning to “live in harmony with Willow” was a bit of a challenge for our family at first.  She seemed to have boundless energy and wanted to literally throw herself at anyone and everyone she met.  She was also a very good escape artist and had a bad chewing habit.  She chewed the trellis along the top of our fence as though it was gingerbread, took chunks out of our deck, ate one of our son’s shoes and chewed the plastic hand off one of our daughter’s dolls.  The kids changed a song they knew about God so it fitted the dog… “our dog is so big, so big and so mighty, there’s nothing our dog cannot chew…”.  We’ve now blocked off the area near the trellis, restricted Willow from the hedge (which she used to manage to get through, despite the wire mesh we put there to prevent it)  and found that you can buy a natural spray (it smells like rotten apples) to spray on the house to prevent chewing there.  She sleeps inside at night, but wears a muzzle so there won’t be any more problems with shoes, dolly hands or anything else.  My six year old son (pictured with puppy Willow at the top of this article) loves dogs, and it was he who most wanted to get a puppy.  Initially, however, he was quite scared of Willow, because she was so boistrous, and was only comfortable with her when she was on a lead.  As the kids have grown more used to Willow, Willow has also mellowed– she is, after all, now 14 months old, an adult dog.

Willow Pumpkin FY

A big advantage of having a dog is that she gets us all outside more often than we might be otherwise.  Often, especially at weekends, the kids will groan when we say we are going to go and walk the dog, especially if they are doing something like watching TV or playing on the i-pad.  Once they are out walking Willow, however, they enjoy throwing her ball to her and get exercise and fresh air themselves and, because the whole family are involved in walking the dog, we are also interacting with one another– Willow has drawn us together.

I tell the “story of Willow” to illustrate the benefits of animals to families and children.  We also have a rabbit and a cat and all the animals are definitely regarded as part of our family.  They have shown our children patience, companionship, responsibility and unconditional love.  I believe that it is a natural part of being human to live with animals and I can only imagine that adults who dislike or, in the worst cases, are cruel to animals, have had either a negative experience of them (perhaps not tempered by a responsible adult intervening) or have had limited or no experience of animals at all.  It is also worth noting, here,  the co-relation that often occurs between cruelty to and abuse of animals and similar actions directed towards children… see a previous post on “The Forever Years” at the link below.

https://theforeveryears.wordpress.com/2015/06/18/the-close-link-between-animal-abuse-and-child-abuse-by-ginger-kadlec/

I read a bumper sticker on a car recently, whilst parking at the “doggy park” where we commonly walk Willow.  It read “dogs not drugs”, which to me  expressed how animals can take us “out of ourselves” and “ground us” in a healthy and natural way.  For kids a pet can provide a sense of stability and connection, especially in situations where other factors are less than ideal.

Another interesting  finding is that emerging readers often prefer reading aloud to an animal friend than to another human.

Reading to a Cat

Psychologists have long been aware of the benefits to children (and to human beings in general) of interaction with “furry friends”, so much so that some interesting animal related “therapies” have been devised, some of which I’ll out line, briefly below for your information.

Animal Assisted Therapies (AAT) are any kind of therapy involving animals being part of the treatment for a variety of conditions.  Dogs are a common choice in AAT, perhaps because they tend to engage with patients and require engagement in return.  The goal of AAT is to improve a patient’s social, emotional, or cognitive functioning.

The  biophilia hypothesis (Edward O .Wilson, 1984)  is based on the premise that our attachment to and interest in animals stems from the strong possibility that human survival was once partly dependent on signals from animals in the environment, indicating safety or threat. The biophilia hypothesis suggests that now, if we see animals at rest or in a peaceful state, this may signal to us safety, security and feelings of well-being which in turn may trigger a state where personal change and healing are possible. 

[Source: Schaefer K (2002) Human-animal interactions as a therapeutic intervention Counseling and Human Development, 34(5) pp.1-18].

527416b2838a4.preview-620Equine therapy, also known as equine-assisted therapy (EAT), is a treatment that includes equine ( horse-related) activities or an equine environment to promote physical, occupational, and emotional growth in persons with attention deficit hyperactivity disorder (ADHD), anxiety, autism, cerebral palsy, dementia, depression, developmental delay, genetic syndromes (such as Down syndrome), traumatic brain injuries, behavioral issues, abuse issues, post traumatic stress disorder (PTSD), drug and alcohol addiction, and other mental health problems.[1] Since the horses have similar behaviors with humans, such as social and responsive behaviors, it is easy for the patients to create a connection with the horse.  Riders with disabilities demonstrate accomplishments in national and international sport riding competitions.  

[Source:  https://en.wikipedia.org/wiki/Equine_therapy]

Dolphin Therapy involves swimming with dolphins.  Children have a one on one  session with a therapist and dolphins in a marine park.  The goals are similar to those of AAT and EAT (see above).

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Therapy Cats are cats used as companions to help people with illnesses and anxiety.  Cats are chosen to be used in therapy based on their temperament.  With regard to children in particular, the cat must enjoy being held and cuddled.

There have been arguments made that therapy animals can work as well as or better than conventional pharmaceutical medicine for helping people relax, lowering stress levels and blood pressure decreases, [Associated Press (December 1, 2009). “Even hairless Sphynx cats give patients a warm, fuzzy feeling”. USA Today. Retrieved 2012-01-14.}, causing the heart rate to slow down.  According to one report, therapy  cats can help children and teens with special needs to “feel relaxed”, and that the human-cat communication is beneficial. [staff writer (March 4, 2011). “Jersey City dance school mourns loss of therapy cat”. The Jersey Journal. Retrieved 2012-01-14.]

(Just as an aside, cats and their crazy antics are among the most highly searched Youtube videos).

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A “Therapy Cat” in action with a young cancer patient

As well as Willow, our dog, our family have a black cat called Zoe and a black and white lop-eared rabbit called Puff.  Each animal has his or her own personality and figures strongly in the lives of our children.   Puff, our rabbit, is eight, old in bunny years (we got him when my second son was a baby).  He had a “wife” , a white lop-eared rabbit called Lippity (at one stage they had 14 babies together… we gave those to friends and to a pet shop and had Puff neutered).  Lippity’s funeral was sad for our four children… and for us.  She is buried with her own special headstone made from a painted rock in our garden.    I remember similar “funerals” from my own childhood, but I feel a sense of joy and warmth when I think of those pets (such as an old cat who used to make “tunnels” under my bed sheets and didn’t mind being pushed around in a doll’s pram).

K & K FY

These pets were part of the reason I wanted our own children to have animals as part of the fabric of their “forever years”.   Our “furry friends” live in the moment and ask for nothing more than food, care and love. Because a pet’s death might be their first time losing a loved one, the grieving process can help kids learn how to cope with other losses throughout life.  Perhaps there is a reason why, in normal circumstances, we out live our animals.  As well as all their other great qualities, animals teach us and our children to value life.

Zoe's tea FY

Related Links:

http://kidshealth.org/parent/emotions/feelings/pet_death.html

http://www.parents.com/parenting/pets/kids/pets-good-for-kids/

http://www.oprah.com/relationships/10-Reasons-Pets-Are-Good-for-Kids

 

 

Protest at CYF office over Leon Jayet-Cole’s death, by Myles Hume

 

Leon

 

Police are monitoring a group staging weekly protests outside a Child, Youth and Family (CYF) office after the alleged murder of Leon Jayet-Cole.

The group, which includes the 5-year-old’s birth father Michael Cole, will hold its fourth protest outside the Papanui CYF office on Wednesday – coinciding with the day of the week Leon was taken to Christchurch Hospital with fatal head injuries.

Christchurch labourer James Stedman Roberts, 34, has pleaded not guilty to murdering Leon, his autistic stepson, at their Papanui home on May 27. Emma Le Fleming Roberts, 37, has been charged with failing to get her son medical treatment.

Michael Cole and a handful of supporters have organised weekly gatherings outside the Winston Ave premises, holding signs expressing disappointment in CYF and its dealings with Leon and his family.

(To read more, follow the link below…)

http://www.stuff.co.nz/the-press/news/70368831/protest-at-cyf-office-over-leon-jayetcoles-death.html

 

Don’t Forget April 2nd: World Autism Awareness Day

Autism Collage FY

 By Kirsteen McLay-Knopp

One in 68 of our world’s children is diagnosed as being on the Autism Spectrum: as having “ASD”, Autism Spectrum Disorder.  Autism occurs across all racial and ethnic groups and is almost five times more common among boys (1 in 42) as it is among girls (1 in 89).  [Stats source: http://www.cdc.gov/ncbddd/autism/data.html].  World Autism Awareness Day is April 2nd.

So what exactly is autism?  Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.  ASD can be associated with intellectual disability, difficulties in motor coordination and attention as well as physical health issues such as sleep and gastrointestinal disturbances. Some people with ASD excel in visual skills, music, maths and art.  Doctors include autism in a group including Asperger syndrome and others. These conditions occur when the brain develops differently and has trouble with an important job: making sense of the world.

Autism1The reasons for a child being on the Autistic Spectrum are as varied as the children themselves.  Most cases of autism appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development. In the presence of “autism risk genes”, a number of non-genetic, or “environmental,” stresses appear to increase a child’s risk.  These include a child born of older parents, maternal illness during pregnancy and deprivation of oxygen to baby’s brain during the birth experience.

What does the world look like through the eyes of a child with autism?  Every day, our brains interpret the things we see, smell, hear, taste, touch, and experience. But when someone’s brain has trouble understanding these things, it can make it hard to talk, listen, understand, play, and learn.  A child’s symptoms can be mild, severe, or somewhere in the middle. For example, some children might be upset by too many noises or by sounds that are too loud. Those with milder symptoms don’t mind loud noises so much. Someone with mild symptoms might need only a little help. A child with severe symptoms, however, might need a lot of help with learning and doing everyday stuff.  Some severely autistic children are non-verbal.

A child with an autism spectrum disorder might:

  • have trouble learning the meaning of words
  • do the same thing over and over, like saying the same word or moving his or her body the same way over and over, “stimming”– short for “self stimulation”.
  • move his or her arms or body in a certain (unusual) way
  • have trouble adjusting to changes (like trying new foods, having a relief teacher, or having toys moved from their usual places)
  • be obsessed with one thing (cars, trains, computers) to the point of having no other interests.

Some issues — like not wanting to try new foods, not wanting anyone to move your toys, being obsessed with one thing — affect lots of children, not just those who have an autism spectrum disorder. But kids with these disorders have more trouble “growing out of it” and learning to handle stuff that’s challenging and annoying.

People with autism often can’t make the connections that others make easily. For example, when people smile, you know they feel happy or friendly; when people look mad, you can tell by their face or their voice. But many kids with autism spectrum disorders have trouble understanding what emotions look like and what another person is thinking. They might act in a way that seems unusual, and it can be hard to understand why they’re doing it.

e3be1f5a70b09c2fd9ae043ccfe1529fImagine trying to understand what your teacher is saying if you didn’t know what her words really mean (a good analogy is if you were in a classroom where the teacher spoke a language which was foreign to you). It is even more frustrating and upsetting for a child if he or she can’t come up with the right words to express his or her own thoughts, or tell a parent what they need or want.

Figuring out if a child has an autism spectrum disorder can be difficult in the beginning. Symptoms tend to present between 2-3 years of age.  A parent is usually the first to think that something could be unusual. Maybe the child is old enough to speak but doesn’t. Maybe he or she doesn’t seem interested in people, has a hard time playing with others, or acts in unusual ways.   Autism cannot be definitively diagnosed until around 18 to 24 months,  but research shows that children as young as 8 to 12 months may exhibit early signs. Parents should look for symptoms such as no back-and-forth sharing of sounds, smiles or other facial expressions by 9 months; no babbling or back-and-forth gestures (e.g. pointing) by 12 months; or any loss of babbling, speech or social skills at any age.

Often, specialists work together as a team to figure out if there is a problem. In addition to the doctor, the team might include a psychologist, speech therapist, occupational therapist and teacher (or different combinations of these).

There is no cure for autism, but doctors, therapists, and special education teachers can help kids “on the spectrum” learn to communicate better. A child might learn sign language or get a message across by pointing at pictures. The care team can also help improve his or her social skills: stuff like taking turns and playing in a group.

Some children who have mild symptoms will finish high school and may go to university and live independently. Many (particularly those with more severe symptoms) will always need some kind of help. But all will have brighter futures when they have the support and understanding of their families, doctors, teachers, therapists, and friends.

Statistics show a ten-fold increase in the prevalence of autism over the last 40 years and this continues to grow.  [Source: https://www.autismspeaks.org/what-autism]. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.  Careful research shows that this increase is only partly explained by improved diagnosis and awareness.

Every year, autism organizations around the world celebrate April 2nd, World Autism Awareness Day with unique fundraising and awareness-raising events.  One of these is “Light it up Blue”.  This campaign was launched in 2010 in the USA by Autism Speaks, to raise international awareness of what it means to be on the Autism Spectrum.  Iconic landmarks around the globe as well as airports, bridges, museums, concert halls, restaurants, hospitals, and retail stores, are among more than 100 structures in over 16 U.S. cities and nine countries around the world lit up in bright blue for World Autism Awareness Day.  

liub waad collage of world landmarks BLUE

Another symbol of World Autism Awareness Day is the brightly coloured “puzzle” ribbons worn.  The “Autism Society” of autismthe USA describes the ribbon in the following way: “The puzzle pattern reflects the mystery and complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and appropriate treatments, people with autism will lead fuller, more complete lives”.

Someone once said “ignorance is just a lack of awareness.”

 

Related Links:

http://www.cdc.gov/ncbddd/autism/data.html

https://www.autismspeaks.org/what-autism

http://kidshealth.org/kid/health_problems/brain/autism.html

https://www.autismspeaks.org/liub

http://en.wikipedia.org/wiki/Light_It_Up_Blue

http://arvindpariti.blogspot.co.nz/2012/04/landmarks-light-up-blue-for-autism.html

http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/

“I have Autism and the world treats me different”, by Tracey Dee Whitt

In light of World Autism Awareness Day, April 2nd, “The Forever Years” felt this was an important article to share.

lovin' adoptin'

I have Autism
I have Autism, and the world treats me differently.

If your child has Autism, you know what I’m talking about. The stares, questioning looks, noses stuck so far in the air you’d think they were preparing for a dental exam, questions, comments, avoidance, accusations, recommendations, and rarely, smiles.

There are a variety of ways others respond to our Autistic children. A persons perceptions are sometimes based on their previous experience with Autism. This can be problematic because every child with Autism is different, they all have varying abilities.

If someone knows a person who has Aspergers (a form of Autism), they may expect another child with Autism to act the same way, trying to fit them in a peg hole. For example, our son, Jeremiah, has nonverbal Autism and has struggled developmentally, he is nothing like a child who is on the other end of spectrum. Some people assume…

View original post 1,115 more words

To Those Campaigning for Acceptance of People With Disabilities, Please Remember This, by Liz Roush

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Reblogged from: “The Mighty”

http://themighty.com/2015/03/to-those-campaigning-for-acceptance-of-people-with-disabilities-please-remember-this/

It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better, more desirable version of the child and their disability.

I say this as news stories abound everywhere on social media, like Facebook, Instagram and Twitter, with pictures galore of children and adults with Down syndrome, autism or other disabilities. In these pictures the children are participating in athletics like cheerleading, basketball and wrestling for their school teams, graduating from high school with their diploma in hand, modeling for Target, Nordstrom or Toys ‘R Us catalogs, getting a job or even being a bat boy for the Cincinnati Reds.

There are videos of dancers, musicians or athletes with Down syndrome and autism blowing people’s ever-loving minds with their abilities. Marriages, driver’s licenses and college-bound adults with disabilities are also on the rise. How about the teenage kid with autism who’s a physics genius and working on his own theory of relativity?

These are all amazing achievements from awe-inspiring individuals, and we all go “ooooh,” and  “aaaah,” and smile. Maybe we even shed a few happy tears watching the videos, hearing the stories and seeing the pictures. Especially those of us who have a child with the same disability. We revel in it, all the while probably secretly, or even outwardly, hoping, yearning and praying for the same or higher accomplishments and recognitions for our child.

Now don’t get me wrong, I think it’s wonderful these people are all able to participate in something they love and excel at it. And I really do enjoy seeing their happy faces beaming with the pride of what they’ve achieved with a lot of hard work. There are so many individuals exceeding expectations, goals and misconceived mindsets, and it is a sight to behold. Of course they should celebrate and share their accomplishments, but I think we as a society desire the “higher functioning” child.

What about those so-called “lower functioning” individuals? What place do they have? Shouldn’t the child quietly sitting in a wheelchair deserve as much recognition and acceptance for their abilities, whatever they may be or as minor as they may seem?

What if a person with significant mental or physical delays isn’t involved in organized sports or can’t be trained to hold a job? What if they’re never potty-trained, always need help taking a shower and are unable to feed themselves with a spoon? Would it really be awful if they never moved out? Can society enjoy an individual who’s needs are higher and ambitions less headline-worthy?

I was especially conflicted in summer when I attended a Down syndrome convention. Everywhere you turned there were presentations and praise for teens and adults with Down syndrome who’d exceeded all expectations. These individuals with Down syndrome were more alike than different from those who don’t have Down syndrome. I felt torn because on one hand, I could see this kind of future for my one daughter, who has Down syndrome and falls under the “high functioning” label (I’ve actually been asked multiple times if she has just “a touch of Down syndrome:).

But on the other hand, my other daughter, who also has Down syndrome, wasn’t like these individuals at the convention. She’s perceived as “low functioning” by most who meet her because on top of having Down syndrome, she also has autism. This dual diagnosis makes her different from her peers who just have Down syndrome.

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Here I was at a convention all about Down syndrome, yet I felt like my one daughter was somewhat excluded because she couldn’t quite fit the convention’s overall emphasis on individuals with Down syndrome who most would label “high functioning.” It was disheartening.

In my opinion, there should not be such a strong focus on someone’s level of function, how verbal they are or what life skills they’ve mastered when trying to obtain acceptance, raise awareness, maintain dignity and gain the use of inclusive practices. Perhaps someone with a disability feels like they’re in the shadows, ignored or undervalued when compared to peers with the same diagnosis who are celebrated for their successes in their life.

My wish, no, my dream these days is for everyone to value, respect and praise individuals like my daughter, who have multiple diagnoses.

Or the child who will never walk.

Or the nonverbal teenager rapidly rocking in church and making loud vocalizations.

Or the 35-year-old man holding his mom’s hand at the mall.

I want these people to be valued and praised as much as the ones who can run, talk, dance in recitals, score a touchdown, shoot a winning 3-point-shot, earn their high school diploma or graduate from college by the time they’re 16. I’d also love to see a child with Treacher Collins syndrome or a cleft palate (repaired or not) grace the pages of a department store catalog.

If you’re promoting the acceptance of disabilities, then please embrace and include everyone — the lower functioning, the mid-functioning and of course the higher functioning. They all have a story and need to be celebrated because in the end all life is precious, no matter the functioning level.

 

How to Support Parents With Special Needs Kids, by Sharon Lynn Pruitt

Reblogged from “A Fine Parent”

http://afineparent.com/close-knit-family/special-needs-kids.html#comment-64264

Sharon FYAbout Sharon Lynn Pruitt

Sharon Lynn Pruitt is a writer and recovering Netflix addict from the Midwest, in the USA. When she’s not chasing after her rambunctious toddler, you can find her on Twitter musing about life in a flyover state at @SLPruitt.

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Do you feel tongue tied when you meet parents with special needs kids? Are you worried that you might say or do the “wrong” things?

As the mother of a child with autism, I’ve seen a lot of people in your situation. And even though most mean well, sometimes friends and family do end up with their foot in their mouth.

My son Addy was diagnosed with an autism spectrum disorder about one year ago. I remember sitting in that doctor’s office, twisting a Kleenex in my hands to calm my nerves, feeling terrified to hear her say the words I knew were coming.

That day feels like a lifetime ago. The process of getting a diagnosis and taking the next steps was at times overwhelming, and it was an adjustment that took time not only for me, but for those closest to me as well.

Through mostly a process of trial and error, my friends, close family, and extended loved ones no longer worry so much about what to say or do when it comes to Addy. His autism is merely another part of what makes him who he is, much like his love of Thomas the Tank Engine and grilled cheese sandwiches.

According to CDC, 1 in 68 children is identified with Autism Spectrum Disorder. Today, I’d like to share with you, the best I can, what it is like to be the parent of a special needs child, and what you can do to support that parent in your life with a child like mine.

#1 Don’t ignore their concerns in the beginning

blue-eyes-baby-640x423Addy was my first child. Born in the summer between what was to be my final two semesters of college, he was at once everything I feared and everything I dreamt of one day having.

As the story usually goes, life had its fair share of surprises in store for me, the first of which presented itself not long after I’d begun to feel comfortable, if not confident, in my ability to thrive as a single parent.

Addy was particularly quiet as a baby, opting to communicate with his body rather than with sounds – when he chose to communicate at all. By the time he was nearly 18 months old, he was still largely non-verbal, and getting even the shortest bit of eye contact from him felt like a losing battle every time.

Whenever I tried to bring up my concerns with those closest to me – and more experienced – I was always met with the same reaction: he’ll talk when he’s ready. I’m sure everything’s fine.

Even though I knew that they were trying to help, I wanted to shake them. I wanted to scream.

No, everything isn’t fine!

When interacting with parents who may suspect that their child has special needs, it may feel natural to assure them that everything is okay. It may feel like you’re helping them, offering comfort by denying the mere possibility, and while it’s true that some may be looking for someone to assuage their fears, some of us just want what we see with our own eyes validated.

If you’re sensing that they want someone to acknowledge their concerns, here’s what you can do: use that opportunity to change the tone of the conversation. Finding out that your child has special needs does not need to be approached as if it’s the end of the world. Assure them that, even if that is the case, everything will still be ok.

Help them find ways to be proactive with their concerns, rather than just trying to hand-wave them away. It takes courage to get to that point, and that courage should be commended.

#2 Maintain a positive attitude

150217_DX_VaccineResist.jpg.CROP.promo-mediumlargeThat day in the doctor’s office, I thought that hearing her say the actual words (“Yes, Addy does have an autism spectrum disorder”) would destroy me. But, after all was said and done, I felt an immense rush of relief.

Of course, once I got back home and everything really sunk in, it wasn’t long before I got to worrying again. But, in that moment, I felt as if I could finally stop wondering about the ‘what if’ and instead we could move forward.

I gave myself that time to cry and to feel fully whatever came, and it’s ok if you need to do the same, even if it isn’t your child. Maybe it’s your grandchild, or nephew. ‘Working through it’ for yourself in this way puts less pressure on the parent you’re trying to support. I couldn’t walk each and every person close to me through the process of acceptance I went through; I didn’t have the emotional energy left over.

A diagnosis isn’t a death sentence.  I view it as the gate through which parents of special needs children can walk through in order to start moving toward a better life for their child, one in which they’re equipped with the tools needed to help them fulfill their potential.

But after all this time, I still forget that. Sometimes it does feel like a death sentence, like I have to say goodbye to everything I wanted for my child. There are times when I still get lost in the guilt and the hopelessness, wondering time and time again if it was something that I did (even though I know that it doesn’t work like that), feeling anxious about what the future will be like for my son (no one knows, just like with any child).

At times like those, I needed the people around me to help lift me back up again. My sister was that person for me, always there to remind me of all the good things to look forward to, of all the progress we’d already made.

If you’re close to a parent who has a child with special needs, be that person in their life who seems to keep a tally of every single thing they have to be happy and optimistic about, and can recite it back on command.

Having people there to share in my optimism when it came to our next steps (like therapy and early intervention programs), to celebrate our good days and soothe us on the bad days has made all the difference in my life.

#3 Do your research

600-01887399Before Addy, autism was a hazy, unfamiliar concept to my family, just a word associated with charity walks. It was distant, something that didn’t really exist in our world. I’m not proud to admit that, but it’s the truth.

I like to think that I’ve come a long way. I know now that autism isn’t just a quiet kid in a movie who’s really into trains. I’ve come across a lot of definitions, but the one I usually parrot comes from the National Institute of Neurological Disorders and Stroke:

Autism spectrum disorder (ASD)  is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.

I feel like I could recite that in my sleep.

But here’s the thing: I’m not always in the mood to educate, especially if we’re having one of our more challenging days. Sometimes I feel like a broken record, wishing I could just hand out a brochure to all the aunts and uncles and distant cousins who have questions over holiday dinners.

Sometimes I’m happy to talk at about it – I’ve gotten to that place, but maybe other parents haven’t. There’s a chance that everything is still very new and intimidating for them, and they’re struggling with it. Read their body language and tone, and you’ll probably be able to tell which stage they’re in.

The first few weeks following an autism diagnosis can come with a renewed sense of hope, now that you have a name for something which felt so present in your life but which you were unable to articulate. At the same time, it can be nothing short of terrifying to feel as if you’re entering completely foreign territory with the future of the person most important to you at stake.

Look at it this way: if your niece has just been diagnosed with autism, bombarding her mother with questions like ‘So what is life going to be like for her now? Can she go to ‘regular’ school? Will she ever learn to talk?’ may just send her into the tailspin she’s been trying to avoid.

Doing your own research doesn’t mean you can’t ask questions. It just means you care enough about both the parent and child in your life to do some of the work yourself. Chances are, you may learn something they haven’t yet, or bring a fresh perspective to later conversations.

If your child is  friends with a child who has special needs, doing your research can be as simple as a Google search to make sure you know the basics, and talking with the child’s parents so that you’re aware of any sensitivities you need to be aware of.stock-photo-17763574-african-american-woman-and-toddler-son-using-the-computerFor example, some individuals with autism are extra sensitive to light and sound, and events that have too much of either may overwhelm them. You’d want to be aware of any allergies before planning a dinner party, wouldn’t you? It’s pretty much like that.

When Addy was first diagnosed, and the relief passed, I went through a period of time where I was too anxious to do much research, feeling overwhelmed by search engine listings that included words I’d never even heard before. In those days, my older sister was an invaluable resource for me. She did research on her own time, and would causally drop encouraging tidbits of information into our conversations, and would gauge from my reaction whether I was ready to hear more.

Having it come from a loved one who was trying to help me made everything less scary for me, and helped me get over the paralyzing fear and continue moving forward, having been reminded that I didn’t have to do everything alone.

#4 Be there for them, even if you don’t yet know what to say

doctor with patients in hospitalThere’s a lot to be said just for being there, physically. My brother went with me to every appointment during the stages of getting the diagnosis. As a single parent, I told myself that I’d be able to continue handling everything on my own, but when the time came, I was thankful just to have another adult in the car with me on the way home.

You may not always have the right words, but you can try and be physically present for the support. We were all still learning about autism, but when my family saw the emotional toll it was taking on me (and the fact that I often looked close to having an emotional breakdown, if I’m being honest), they stepped in.

They offered to babysit, so that I could have time alone with my thoughts, uninterrupted by children’s show theme songs or insistent crying, or take the time to get out of the house (and out of my head). They cooked meals for me, to take some of the pressure off. They sent me encouraging text messages, just reminding me that we were all in this together.

Once I opened up and let them in, my family rallied around me; we were all brought together in support of my son. All of us are closer now than ever before, and that’s bemuse they made it clear, through their constant presence in my life, that they wanted to support us in whatever way they could.

#5 Be patient

Two women with cups of coffee close upAddy and I have embraced our new normal of almost daily therapy, of beginner sign language and sensory social routines (games that encourage social interaction), but every day comes with its own challenges and rewards, and feeling optimistic one day does not guarantee that same attitude tomorrow.

My son has not yet begun to use words, and it’s really hard for me sometimes to watch children who are younger than him be able to do things that we have to work so hard on in therapy. Of course, then I feel guilty for feeling that way – measuring him against the yardstick of other childrens’ progress- and the cycle begins.

There are days when I feel like a confident, well-adjusted parent, and then there are the days where the optimism seeps out of me like air from a punctured balloon.

The key thing to remember is that autism looks different in every individual. Some kids with autism are nonverbal; some learn to talk just fine. Individuals with autism see the world differently than those who are not ‘on the spectrum,’ and that can manifest in skills in things like music and art.

Addy is almost three now, and doing well in therapy and the early intervention program that he’s enrolled in. Still, progress can be hard to see sometimes, and that can be discouraging. No one can really say that your child will learn how to do this or that by whatever age. All you can really do is make goals and work towards them, step by step

When you first have children, you think they have a pretty clear cut path they can follow – school, extracurricular activities, college. It feels like you have some sense of control over it, even if that control is an illusion.

Since Addy’s diagnosis, I’ve had to accept the fact that I really can’t guess what the future will look like for him. That’s hard to deal with sometimes – really hard.

Will he learn to talk? How long will it take?  Will he be able to be independent as an adult?

We all have those days, whether you have a child with special needs or not – the unknown is just too much to handle. Sometimes I just need to vent, and say that I’m scared, and that I don’t like it.

Let me.

The 2-Minute Action Plan for Fine Parents

If you have a close friend or a family member who is raising a child with special needs, think about how you can support them. Do you view having special needs as an awkward topic (which can, in turn, make them uncomfortable)? Are you a sympathetic ear when they need it?

The Ongoing Action Plan for Fine Parents

723d4e0be650239043e5956b024ea21eIt’s all about being accepting of those who are different from you. Think of how you can teach your children to be empathetic to special needs kids that they meet. Set aside time to talk openly and make a plan to learn and grow together as a family.

Use what you know to inform others and be an advocate for those with special needs. If you hear someone spreading a misconception about children with autism or any other special needs, engage them in conversation. I didn’t always know the things I know now, and you didn’t either.  Maybe with enough of these conversations, parents can be more aware of the symptoms of autism and other disorders, and the process of getting help won’t be as stigmatized or as intimidating.

 

Editor’s Note (By Kirsteen McLay-Knopp)

Speaking with parents of kids with special needs and reading their comments online, another important support is becoming involved in local groups.  Through these, parents can often hook into resources and services available for helping children with their own particular needs.  Such groups are invaluable for reducing feelings of frustration and isolation, as parents meet others in similar situations.

A Rescue Dog Changed This Autistic Boy’s Life Forever

Kindness Blog

This is the beautiful story of an Autistic boy and his dog, and how they helped one another.

Xena The Warrior Puppy ASPCA Dog of the Year

Jonny began exhibiting symptoms of Autism early on in his life. Sometimes, when his father would bring him to the deli to pick up meat, Jonny’s dad would place his order, and Jonny would begin screaming at the top of his lungs. Among other things, food gave him a great deal of anxiety. Additionally, the little boy would have almost no interaction whatsoever with the family dogs the Hickeys had at the time.

The family’s situation, as it is for so many other families, was stressful and challenging – they just wanted a way to help improve their son’s life. Then something amazing happened.

A terribly emaciated and near death Pit Bull had been found. She was near death. The rescue organization responsible for her care felt that she was in need…

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