Tag Archives: Autism Spectrum Disorder

is changing Autism acceptable?

How much can you change Autism, yet keep
Last week in the post, Are Autism Behaviors Annoying, I mentioned a conversation which took place between me and a family member about Autism. You can read that post to see where this relative, Joan, was coming from.

Joan continued from the “…annoying,” comment to telling me about an acquaintance they recently ran into. This acquaintance (someone I also know), Lacy*, has a son, TJ*, who has Autism.

TJ’s mom, Lacy, had chosen to open a store where her son was present during business hours. Lacy cried herself to sleep every night because of the horrible comments the customers made about her son.

She couldn’t handle the criticism.

I understand that it’s so hard to hear comments about your child, or about Autism behaviors in general when your child is on the Spectrum. I haven’t spoken with her about it, so I don’t know if she felt she couldn’t run a business with her son present, or if the comments made her feel bad. Maybe she felt for her son and what he was going through. Whatever her reasons, it’s important that as Autism parents we ask ourselves where our focus lies.

Is our focus in “curing” our child so we can live “normal” lives? Or is our focus to help our child be the happiest they can be? Do we want our child to have different behaviors so we can function in the way we want, or is it because we think it will be best for our child in the end. As I’ve talked to adults on the Spectrum, I’ve learned that so much of what some Autism parents want is not what the Autism person wants.

Forcing them to fit in isn’t necessarily what’s best for them.

I’d already heard about what Lacy had done with her son to help his is our goal in changing Autism to make our life easierAutism, so I said to Joan, “I really don’t want to ‘cure’ Jeremiah’s Autism.” She looked at me as though I was an alien who had fallen from another planet. “Why not??” I answered, “Well, I’ve talked to many adults with Autism, and they like who they are, they don’t want to be changed. And second, I like who Jeremiah is, I feel he’d be very different if his Autism was taken away. His Autism largely makes him who he is.” Joan disagreed and said she thought he’d have the same personality without Autism.

I can see where it would be impossible for someone to see it from my perspective if they aren’t involved in the Autism community, don’t talk to others who are Autistic, and see the positive attributes of Autism. So many want Autism to go away, as I’ll discuss a little later.

Joan explained again what the doctor had done with TJ. He used wires which connected to TJ’s head while TJ held a dog in his lap. A video played on the screen, and anytime his brain made a connection on the “right” pathway, the dog danced in his lap, thus reinforcing that “right” pathway. Here’s my concern I shared with her, “I would have it done on myself before I ever let them do it on Jeremiah.” She gave me an odd look. I added, “I would want to make sure it didn’t hurt him. Shock therapy is being used on Autistic people and it’s not okay, so I would want to make sure it’s not painful or irritating.”

Joan replied, “Oh, it’s perfectly safe.” Well, that’s nice, but I added that there are those who do NOT practice safe and beneficial therapy.

My point of view on Autism is changing drastically, and this is an example of where people go blindly into situations and they forget to contemplate the desires of the Autistic person.

There are two schools of thought on Autism, those who want to “cure” or “fix” it, and those who don’t. Okay, maybe there are a few who fall in the middle. I was more on the side of fixing it until I began immersing myself in the Autism world by living it, studying it, and writing about it, and communicating with Autistic adults. I began to see how truly unique my son is and how much his Autism affects who he is.

Heck, we all have a little Autism in us.

In reading and talking with adult Autistics I hear many of them don’t want their Autism “cured” and some blast groups such as Autism Speaks for their drive to “cure” Autism. They like who they are. As a result of listening to their ideas, I began to see more and more of the qualities Jeremiah possesses.

I’ve also looked at the way Jeremiah has changed me, and I see how it’s drastically formed who his sister is. I feel I’m so different because of him. Yes, doing foster care changed me, but having two children with disorders and disabilities has wrecked my world, in a good way. A life changing way. My perspective of the world has changed, I have more compassion, I know that others may be dealing with underlying issues and therefore exhibit diverse behaviors. Although I have God given sensitivities, I have been made more sensitive to both of my children’s needs, beyond what would have normal for me.

Maybe I’m scared to remove Autism because the child I love so dearly would be different.

I don’t want to change Jeremiah, I adore him. It would be like me wanting to drastically change who someone else is, although I may not like certain aspects of who they are, it wouldn’t be fair for me to change them, and frankly I can’t.

The world needs to change, and Autism is one way to do that.
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*Names have been changed to protect privacy.

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get the right response (Autism)

get the right response
People with Autism are intelligent, but sometimes as a parent of an Autistic child it can be difficult to see at times.

When we ask our children to do something and they don’t respond, it’s not a lack of intelligence, but the Autistic child’s brain taking time to process everything. Temple Grandin has said…

The Autistic brain doesn’t process verbal and visual cues at the same time.

When Jeremiah was younger, I talked to him in full sentences, I wanted to treat him just as we had our daughter and she was able to understand complete sentences. At some point, I realized he wasn’t processing what I was saying, so I shortened those longer phrases, if I wanted him to do something, I said, “Get off the table.”

Use short sentences ending in the action you want to take place.

Despite the change, I was still having trouble getting him to do what I asked. When Jeremiah was three-years-old, we had a Developmental Specialist and Speech Pathologist coming to the house to work with Jeremiah. They said many times kids (not specific to Autism necessarily) only hear the last one or two words you say, so they suggested saying, “Get down,” instead of , “Get off the [insert whatever your child constantly climbs on],” or “hands off,” when they’re, let’s say, hitting the t.v. instead of, “Stop hitting the t.v.”

keep it simpleWhen you say, “Stop hitting the t.v.,” your child may only be processing the last word, “Blah, blah, blah, t.v.” Whereas, with saying, “hands off,” they can begin to learn what you want them to do.

These short sentences don’t need to be used in all your communication with your child, only when you need them to do something specific. When they’ve done what you’re asking for a while, you can start using longer sentences and see how it works. Once in a while your child may ignore you, have difficulty processing, or not be focused, so you can occasionally go back to those one to two-word sentences.

Wait for your child to process what you said

When you ask your child to do something, wait for your child to process your words. Give them time to filter what you said. We don’t see, hear, or experience the world the way they do, and they have multiple sensory stimuli coming at them that a neurotypical person doesn’t notice. You can SLOWLY count to five or ten after you’ve given a direction and maybe that’s what they needed, more time to process what you said.

The Autism Site has a great article and video about how people with Autism process the auditory and visual at different times, thus creating confusion.

Move YOUR body

It’s also important to move YOUR body when you ask your child to do something. When your child is hitting something or someone, touching an item they’re not supposed to, climbing on a piece of furniture you don’t want them on, it doesn’t suffice to call across the room, “Get down!” or “Hands off!” you will need to move. If you don’t, your child won’t take you seriously.

I’m not saying you need to be overbearing and mean. Simply tell your child what you want him to do, in an authoritative, but kind voice as you move toward him. If you don’t move and you repeat your request over and over,

your child will sense you’re not serious and will continue the behavior.

Use hand-over-hand to teach your child

With kids who have Autism it often helps to teach them with hand-over-hand movements. This is not to be done in a controlling manner, or to keep their hands “quiet” when they are stimming or clapping. I feel it’s imperative we listen to Autistic adults, and many have been harmed by hand-over-hand teaching. Here’s an example from Julia at juststimming.com. Jess who writes Diary of a Mom also wrote about “quiet hands” here.

If your child doesn’t understand, or has difficulty following directions such as, “hands off,” when you’re asking her to stop touching the t.v., you can gently put your hands over hers, move them off the t.v. while giving the direction. Or, if your child is being rough with an animal, you can put your hands over theirs and pet the animal gently with their hands, while saying, “Be gentle,” or “Soft.” Be sure to use the same word each time.

Some of you may be saying, “But that’s not teaching my child manners.” You can use full sentences, pleases, and thank-yous in all other areas when speaking to your child, but when you want to teach your child basic instructions, it’s okay to skip the manners in those situations.

Be consistent

Parents of Autistic kids know how important consistency and routine are for their children, if not, you now know. 🙂 In teaching your child what’s expected, consistency is EXTREMELY important. I can’t emphasize this enough. If you let up and don’t make your child do the things you’ve deemed important (making sure to take Autism and sensory needs into consideration), your child will revert back to what makes them feel more comfortable; walking around the house with food, jumping on furniture, hitting things.

I’m aware of the need for consistency in our home because when we go without it, Jeremiah reverts to old behaviors. Whenever Jeremiah is sick, he takes steps backwards, and this is to be expected. Whenever I’m sick and unable to keep up, he reverts to old behaviors. It makes sense, but reitterates the need for consistency. We get tired, family members get sick, we go on vacation, routines change, and old behaviors emerge, but trying to stay consistent will help get your child back to what they can do.

Praise specifically and genuinely

Praise your child specifically and genuinely when they do what they’re supposed to. Praise them when they do what you’ve asked, such as, “Thank you for being nice.” Even in those moments when your child is simply doing something you haven’t asked them to, like sitting down at the table for a meal, or jumping on the trampoline instead of wandering through the yard. (Wandering isn’t a problem, Autistic people experience a far different world then neurotypical people, they hear, see, and feel what we don’t, so in wandering they may be meeting several needs. but you want your child to expand their play, interactions, and experiences, thus praise when they do so.)

There can be so much correction and direction given to children with Autism, we need to make sure they know when they’re doing a good job.

I can’t speak for every Autism parent, but I know I’m often tired. It takes love, work, work, and more work to help our kids and we can fall into patterns of not noticing when our children are behaving because those are the times when we let up. I know I tend to notice more when my child is creating chaos. We may be exhausted from life and constantly directing that we forget to tell our child, “Thank you for staying down,” or “That was great listening.” I know I have to remind myself continually to not get absorbed in what Jeremiah is doing wrong, but in focusing on what he’s doing right. In the post More Perspectives on Applied Behavior Analysis you can watch the video which speaks perfectly to this exact scenario.

Jess of Diary of a Mom says, “…Always presume competence and to understand that our children, whether we believe that they are or not, are taking it all in, remembering it, storing it, processing it in their own time.”

You can print this list and place it on the fridge to help you remember the key points in this post:
tips to getting the right response

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I’ve written about getting the right response in relation to adopted and foster children in Keep It Simple: Simple Language = Understanding

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why my child is “differently abled” not “disabled”

 

embracedifferences

After my son was diagnosed with Autism, I began reading articles, blogs, Facebook statuses, and Tweets written by Autism parents. I noticed some parents don’t have a problem with the word “disabled” and some don’t use it.

I didn’t have a problem with the word in the beginning of my journey with my sons Autism. I thought, “My son is disabled, why can’t we use the word?” Parents were disagreeing with many words; “My daughter has Autism, she’s not Autistic,” “My child doesn’t need a label.” When it comes to parents and their children, there can be many things to argue about, but when your child is diagnosed with a disorder or disability that defense of your child can go from hot to boiling over in seconds.

I felt parents were being particular about issues that didn’t really matter. But did they? Those issues/word definitions mattered to those parents because we are all individuals and have different experiences. It’s okay to feel strongly about something and tell others what we think, but sometimes it’s not worth arguing about. And sometimes it is, and should always be done respectfully. Unless of course someone is calling a person with a disability “retarded.” Then it’s perfectly fine to be less than poised and proper. (Side note, you can take a pledge and tell others to end the R-word here.)

In reading these articles and blogs, I came across a mom who didn’t use the word “disabled,” but said her child is “differently abled.” I like it. I wish I could remember whose blog it was on, if I did I’d send you straight over there. She was right. This idea of not using the word disabled isn’t new, I first noticed it when my son started attending preschool at an inclusive school. The school had shirts made for the students and staff that say, “I see your dis ABILITY. Everyone matters.”

Differently abled is right. My son isn’t disabled. I will fully acknowledge he has Autism and believe diagnoses are important to help our children because we then know what they are dealing with, but he has several abilities, they’re just different. So I love what that Autism mom said about her daughter being differently abled. Exactly!

differentlyabled

Jeremiah sees what we don’t see, he notices what we don’t observe, he hears what our ears tune out, he processes the world through a different filter. That doesn’t sound like disabled to me, it sounds like he has different abilities than we do.

I could go on forever about how amazing our son is; how he’s taught me about what life is truly about, how to be aware every moment of what’s around me, how his differences brought out a passion in me, how love conquers any disability. But you can just read more about him and Autism in the posts Discovering the Child Behind the Label and Viewing My Nonverbal Child Differently.

I don’t mind if people use the word “disabled.” I’m not offended, at least at this stage I’m not, but I would love for others to spread the word about the ABILITIES of special needs people. It’s beginning to happen, but we will always run into the fools, who are like the guy I overheard, say, “They overwhelm teachers with large class sizes and have high expectations, then stick the stupid kids in there.” We have a lot of work to do, but some amazing parents, professionals, adults with Autism, and advocates have paved the way.

I want others to see the ABILITIES in every person with special needs.
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my child’s an individual (Autism/special needs)

individual

This post was inspired by Musings of an Aspie’s post, I Am Not Temple Grandin. Please check out her post, it’s well worth the read.

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When someone finds out your child has Autism, do they drop famous names such as, Albert Einstein, Bill Gates, or Temple Grandin, or do they reference the movie Rain Man? Maybe it’s better they relate your Autism experience to these examples than just stare at you, because that’s the reaction I receive the most when I mention my son has Autism.

I’ve also heard references to the above famous names when I tell others about my son having Autism. I’ve also been given blanket statements like, “People with Autism are SO smart.” Yes, they are, but intelligence looks different for every person on the spectrum.

My son is nonverbal, we see glimpses of his intelligence at times, but in other ways life is difficult because he doesn’t understand our world. We have to live in his, which has taught me so much, and try to bring him into ours continually so he can function in life.

I love the post I Am Not Temple Grandin by Musings of an Aspie, she so eloquently describes the diversity in people with Autism, addressing marriage, jobs, and personalities.

mychildisnt

People on the spectrum are just that, people.

They are unique individuals just like everyone else. Problem is everyone else wants to put them in a box. If they’re high functioning or have Aspergers, they’re like those famous people I mentioned earlier, and expectations are placed on them, as if they presume they’re a savant. If someone is low functioning, people want to associate them with someone, albeit non-famous, who is lower functioning.

I don’t think it’s so bad for people to make associations in Autism, but they need to be careful to not place those expectations on others. Also, mentioning the Autistic Greats to parents may make them feel discouraged. We don’t need to be reminded of the awesome geniuses related to the Autism name (we already know all about them – I think Temple has some great insight), we need to be able to focus on our child’s individual greatness. 
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what is inclusion? (special needs)

inclusion

I wish more people knew what inclusion is and the benefits of integrating special needs children in the mainstream classroom. When I share with others that our son attends the ONLY inclusive school in our district, they stare at me, having no idea what I mean. Information exists elsewhere on this topic, so I will share my opinion and experience, as well as share information from other resources.

So what is inclusion?

Inclusion is when children with special needs join mainstream classrooms for the majority of their day. This means children with mild to significant needs are in the same classroom with their peers. Each individuals assignments may look different when incorporating inclusion, as a child with moderate needs may not be able to complete the same task as a neurotypical child (one without a disorder, disABILITY, or developmental delay).

What does this look like for children with more significant needs?

This dynamic functions best when kids with more significant needs have a full time aid. Because of stress levels, social struggles, sensory needs, etc., the child may need to take occasional breaks from the classroom setting, which would be guided by the aid or Special Needs facilitator in the school.

More information on what inclusion is can be found at Kids Together.

Kids Together defines inclusion differently in some aspects. It really depends on where each school is in their readiness for inclusion. Our school does well with inclusion, but is not able to support a child’s every need within the classroom. When there is a child who needs intense sensory input, they’re not able to meet that need within the general classroom. Whereas, in the definition given by Kids Together, it says, “Supports follow the students, the students don’t go somewhere to get them.”

Tim Villegas of www.friendshipcircle.org says, “Inclusion is going to look different depending on each school and student. That is why I think it is helpful to see it as a framework as opposed to a one-size-fits all system.” Progress is progress, and we must work with what we have and move forward.

For a child who thrives on routine and lack of it can create turmoil within them, I believe the model of inclusion must be amended. For example, for holiday parties, assemblies, and times when the teacher is absent, one might consider creating an alternative for the child.

I agree with inclusion, but there needs to be leeway when the classroom dynamics are altered.

“Inclusion is part of a much larger picture than just placement in the regular class inclusion2within school. It is being included in life and participating using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation.” ~ Kids Together, Inc.

At this time in my journey with Autism, I’m in support of inclusion. I have two experiences with my son and inclusive classrooms. Jeremiah attended a mainstream classroom for two years, the teacher and aides did not have the training necessary to help Jeremiah appropriately. Because of their lack of knowledge and their unwillingness to learn about Autism, he was stuck in front of a television most of the morning.

In August 2012 he began attending an inclusive classroom that is part of our school district, and is connected to a primary school that’s inclusive. He thrived immediately. The difference? Teachers and aides who were well-informed about Autism, who were able to read his cues, and were willing to work with him where he was. He’s made great progress in his preschool (now in his second year – and we are VERY sad to see it going by so quickly). We also work with the teachers consistently, sharing his progress or regression at home, what he is saying (only a word or two), playing with, or how he’s communicating.

This helps us all meet Jeremiah where he’s at and encourage him to do more. 

Here’s a post from Special Needs Resource, which lists 10 Examples of Inclusion: For Those Who Need to See It to Believe It

Senminefield holds another opinion, he feels that inclusion doesn’t work for children with Autism Spectrum Disorder. Here’s what he has to say in Special School Vs. Mainstream: Pros & Cons. 

In Senminefield’s post, he discusses the teachers lack of knowledge pertaining to Autism. He does say that it’s not their fault; however, it’s my opinion that  parents should help educate teachers and staff on how to help our Autistic children. If we want inclusion, we can’t complain about every instance that goes awry, we need to work through them with educators to provide them with knowledge of our children they may not have.

Some other great resources for learning about and implementing inclusion are Think Inclusive and The Inclusive Church (for those who are interested in having inclusion work for church and Sunday School classrooms).

What are your experiences with inclusion? Do you think it would work for your child?

Some other posts that may be of interest:
Out of My Mind – including special needs
Great Special Ed Teachers = Priceless
the board’s decision overrides 

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Autism in the hospital

photo by Zwaddi via unsplash.com

original photo by Zwaddi via unsplash.com

It was a simple blood draw. Oh wait, did I say simple? Nothing in life is simple when you have a child with Autism. Everything, and I mean everything looks different for our family. I thought that if there would be a place where people understood it would be the blue smocked folks in the hospital. Nope, I was wrong.

Blood draws are done on individuals with Autism Spectrum Disorder for numerous reasons. Jeremiah needed one (several vials) to check for vitamin deficiencies and for certain genetic components. It’s suggested by some medical professionals that a child with Autism have a blood draw while under anesthesia. Jeremiah FREAKS out when a bandaid is stuck on his skin or when a bracelet is placed on his wrist, so yeah, I think anesthesia was a good idea when considering a sharp, penetrating needle.

He wasn’t able to eat or drink anything prior to the procedure so we scheduled it for early morning. I thought we were going to have a screaming boy all the way to the hospital, and in the waiting room, surprisingly we didn’t.

In an Autism Speaks article one parent relayed their life as Groundhog Day (the movie). Yes, we live it too, and occasionally Jeremiah is able to go with a diversion in the plan. So, when we woke him up, put his coat on, didn’t feed him, and drove to town in the dark without his Sissy, I couldn’t believe we didn’t have a siren in the backseat.

We checked in and the receptionist informed us that he would begin in Pre-Op, and then be moved to the OR without us. What?? I wasn’t a fan and was considered leaving when she said, “Oh no, I guess he’ll stay up here the whole time and you can be in there.” BIG flood of relief.

BLOOD PRESSURE AND BANDAIDS

He did pretty well (only a little whining in the waiting room – benefit of a very early appointment is there wasn’t too much waiting to do) UNTIL…someone he didn’t know tried to get a blood pressure reading. Remember what I said about bandaids? He doesn’t understand what they’re for and he has Sensory Processing Disorder. This means that his body is extra sensitive and he processes stimuli differently.

Now something foreign was on his body and he fought to get it off. With four of us holding him, the nurse couldn’t get a reading. We explained that he has Autism, but it wasn’t enough of an explanation, as she seemed a little irritated. She had a look on her face that said BRAT.

NURSE SANDRA TRIES TO HELP

She left the room and a nurse (let’s name her Sandra) asked if Jeremiah would like a toy. Justin said no. (Justin wasn’t being unkind to Jeremiah, he just knows his son well. He knew that Jeremiah would have no interest in a toy, first, because we were beyond the toy phase. Second, he doesn’t like many toys period. He loves his doodle pad, swing, and an occasional sensory toy. Third, put something in front of him that he doesn’t want and he’ll be upset. He can’t tell us with words that he’s angry and doesn’t want a toy, so what are his options?)

Nurse Sandra asked if Jeremiah has a favorite color. I knew she was trying to help, and to keep from looking like neglectful parents, I went with her to pick out a toy.

Back in the room (Jeremiah ignored the squishy toy I found), Sandra asked if he would let her put the name band on his ankle. You know those beautiful bracelets everyone who is a patient at a hospital receives, just in case they forget who they are? Yeah, no. Did she forget what it was like getting his blood pressure? Not happening.

Next was the cute smock covered in Tiggers. Yes, bouncy, can-do Tiggers. However, this boy was not thinking bouncy, positive, happy thoughts. He had no idea where he was, what was being done to him, or why. Thankfully Nurse Sandra was understanding and let him do the procedure in his pull-up.

Nurse Sandra now needed a heart rate, after three of us tried to hold his little finger still, she did get a quick two-second reading, but it was anything but a normal, resting heart rate. Jeremiah was MAD, and I don’t blame him.

WE ALL KNOW, NOTHING NEEDS TO BE SAID

Justin held Jeremiah and he clung to him, I reached out and Jeremiah turned away. This isn’t a rare occurrence, Jeremiah is more attached to Justin than to me, it’s always been this way. (Something to do with Autism and their attachments to people or things.) I wanted my son to cling to me, I wanted to be the one to console him in the hospital where he was so confused and scared.

As Nurse Sandra watched this, she said, “He sure likes his dad.” Yep! Not sure why people need to label this fact. It couldn’t make me feel any schmuckier. It’s obvious that he loves his Dad. Does this mean he doesn’t love me? Well, he doesn’t talk, so he’s never said, “I love you,” but in my heart I have to believe he does or that heart would break in two.

DR. ANESTHESIOLOGIST

Then the Anesthesiologist entered the room, talk about stoic! We went through the list of 101 Questions again, repeating that, no he hadn’t had anything to eat or drink. Then he said, “I can do a blood draw without anesthesia.” See, he had missed the part where four of us couldn’t hold Jeremiah still enough to get his blood pressure or heart rate. I’m thinking, “Nurse Sandra, would you like to share what’s been going on in here?” I’m surprised the entire floor didn’t hear the screaming.

What I actually said was, “Jeremiah has Autism, and it’s recommended by his doctor that a blood draw be done under anesthesia.” He nodded.

HEY KID, WATCH THIS VIDEO GAME AND ALL YOUR TROUBLES WILL DISAPPEAR

He asked if Jeremiah likes any video games or APPS. We said no, but he handed me his phone, and while Justin held Jeremiah, Dr. Anesthesiologist held Jeremiah’s head from behind with the mask over his nose and mouth, I was supposed to play Angry Birds while the little guy watched. Jeremiah was an Angry Bird! Thankfully it didn’t take him too long to dive deep into sleepy depths. He didn’t fight it, or cry, either because those two were holding him so tight he couldn’t budge or because he was terrified. I go with number two.

I was thanking God that we’d decided to put him under for the blood draw because it took Nurse Sandra several attempts to find a vein to draw from. Several sticks, several vials. Oh, it would’ve been torturous if he was awake.

ONE HAPPY MAMA

He woke up and I was one happy Mama! Nurse Sandra tried to get another heart reading, with three of them trying to no avail. Dr. Anesthesiologist waved his phone with the Angry Birds in front of Jeremiah’s face while Jeremiah screamed. I can only imagine what he would’ve said if he could talk!

SHARE AUTISM WITH THE WORLD

I left the hospital realizing that many medical professionals don’t know about nonverbal Autism. What can we do? Bring awareness to the world. Talk to others about what it’s like. On LinkedIN, Sharon Fialco talked about the difference between bringing awareness of Autism to the world verses acceptance. She’s right, we don’t only need the world to be aware of Autism, but it needs to accept Autism. However, I think awareness would come first. So, share your stories, the good and the bad. Our different is awesome and unique, but if we stay quiet, or pretend that nothing’s different about our children, how will others know how to respond?

*There are many wonderful nurses and doctors who have an understanding of Autism, it just didn’t happen to be our day to run into them. I give Nurse Sandra and Dr. Anesthesiologist kudos for making efforts to help Jeremiah.

high or low functioning: does it really matter? (Autism)

Is your child high or low functioning? If you have a child with Autism Spectrum Disorder, it’s probable you’ve been asked this question. How did you answer? Do you have a planned response if someone asks you this?

The Autism Spectrum is large, it encompasses a vast array of abilities, and now that Aspergers is included on the spectrum, it makes the range even greater. So this makes it difficult to answer the question of whether our children are high or low functioning.

I don’t know about any of you, but when we got our sons diagnosis we weren’t given a place on the spectrum. We didn’t get a pretty little star placed on a graph that explained our son. No, in my experience, our son is anything BUT explainable. Thankfully we are able to (sometimes) recognize that this is what makes our son unique. There is a way to figure out patterns, wants, needs, and communication styles of our children, but it isn’t without intense awareness and investigation into his daily, or more appropriately, hourly routines.

original by Ayla87 via sxc.hu

original by Ayla87 via sxc.hu

There are children on the spectrum who have arms and hands that curl into their bodies, there are children who don’t talk and children who do, children with comorbities such as Angelman’s Syndrome or Fragile X Sydrome, children whose sensory needs overwhelm them, children who understand more than others.

Jeremiah is nonverbal and gets extremely frustrated when he can’t communicate his desires. His sensory needs can overwhelm him and make him act hyper and out of control, or he can manage them well. He has no fear of cars in the street or of anything else really. Does this mean he’s low functioning? But there are children on the spectrum who don’t function as well as he does.

Jeremiah has good fine motor skills and can follow routines and directions if they’ve been in place daily for more than a year. Does this mean he’s high functioning?

Maybe people ask if a child on the spectrum is high or low functioning because it’s the only conversation piece they can think of when it comes to Autism. When I’ve told people (friends included) that my son has Autism, they look at me and kind of nod, like I just told them Safeway grocery sells bread. So, maybe the question of high verses low is better than nothing.

Maybe people ask where a child is on the spectrum because they are trying to make connections to what they know. That would be Rain Man versus Einstein right?

I wonder what outcome the questioner is looking for. If my child is low functioning, does the person feel bad? (Some Autism parents don’t want sympathy, but really, what else is someone supposed to feel for us? Apathy, joy?) On the other hand, what if I told them my son is high functioning? (He’s not, but let’s say he is for now.) Do they then feel like it’s no big deal? Like those who have a high functioning child on the spectrum have it easy, that it’s similar to having a neurotypical child?

A child on the spectrum is a child on the spectrum, and no matter where they fall on the graph, it presents many challenges for them and their parents. My heart goes out to parents of children who struggle more than my son. There are times when I can view Jeremiah’s disABILITY differently because he’s not in a wheel chair, he smiles at me, and makes eye contact. But the off days can weigh heavily on me, just as it can on any parent who has a child anywhere on the spectrum. So, in my opinion I’m not sure this question of high or low matters so much. I think excitement in the progress and sympathy in the struggle is warranted.

Have you been asked if your child is low or high functioning? How did you feel about the question? What do you feel are questions people can ask or comments people can make that would support you and your child?

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