volunteer

This past month, I spent a couple of Sundays volunteering, so adult special needs residents at a state facility could attend church. Due to confidentiality laws, I can't really tell you all that went on, but I do want to share my thoughts surrounding the experience.

The first Sunday, there was a four-to-one ratio of volunteers to residents. Quite a sight to see. So much love and helping others. It was special. And then this second Sunday that I just attended, not so many people came to volunteer. And I began to consider how much I would hope others would volunteer if my special needs daughter outlives my ability to care for her and I need to seek help like at this facility.

My daughter loves music and singing and socializing in her way at church. She is so good that she doesn't need church for the same reasons most people do. But she loves it. It is something she can count on each week. I can't imagine her not being able to go just because not enough people volunteered or there was such a staff shortage that they couldn't leave the campus. My daughter deserves to have happiness even if I'm not around to facilitate or advocate for it.

Maybe I'm worrying too much about things I can't change. Maybe so. But it was all such a time for reflection to put myself in their shoes and see just how valuable a two-hour outing to church can be for some individuals. And they don't even need church like most people. They are so amazingly good. It showed me how everyone needs church for different reasons.

Maybe, if I start just a thought or some conversation about this worry, more people will reach out to give some time to the people who can't go places unless they have our help. Maybe I will remind myself to keep on finding ways to make my daughter's life better. Maybe I will find some comfort from my worries.

puzzles

It's funny how we forget the little things
After awhile it all blends together
The details get lost in the everyday
Skills are taken for granted
And we expect everything to keep on going

What about when the everyday
Isn't an everyday sort of thing
What about when it blending together
Causes the good to stand out
I say the special ones are the most special

Life is a puzzle.
Autism is a puzzle.
But friends?
Friends should never be a a puzzle.
We should know how much people care

Because we are right there
Caring right back
The puzzle makes more sense
Life is bright
And we are making our way one step at a time

walk like a buddy

All of my trips to the hospital this week have shown me something I need to work on with my daughter who has autism. She needs to learn how to walk like a buddy.

I had been recognizing the issue before now, but since I am spending one-on-one with her and can take some extra time, we are working on this skill this week as we walk through the big hospital to and from her standing appointment for EEG testing.

Some of you might be wondering: What exactly is walking like a buddy? My first thought when I coined the phrase in order to illustrate to her how it's done was: People who overhear me are going to think of the song "Walk Like an Egyptian" and think I'm weird. And then I stopped myself and decided that it was weird just to think that and NO ONE else would associate that song with what I was talking to her about as we journey through the hallways. So there we are. I am so weird. But I digress.

Walking like a buddy is something that we all do. When we are with friends, associates, anyone we are with and heading in the same direction, we walk side-by-side or at least very close to it—not twenty paces behind with the leader of all the duckies turning back and telling you to hurry up. As I considered how to teach her about it, I explained that she needs to walk next to me because I'm her friend, and friends walk next to each other, so they can talk to and see each other.

Yesterday and today, we progressed to showing examples of people buddy-walking as they passed us. There was a large group of people who were not all together but several sections of buddies (2-3 to a team), and after I pointed them all out, she seemed to finally connect what it meant. She went into a mock jog to catch up to me and even be a step ahead, and she stayed that way the rest of the way out of the hospital! It was amazing.

When we walk our course to/from her last appointment, I'm going to see if she needs verbal prompting after making that connection. She most likely will but maybe not pointing out examples now. Let's hope!

And just for laughs, here is "Walk Like an Egyptian" for your listening pleasure:

be brave

There are very few people in the world who are brave like this girl. She knows no guile. She gives her all to everyone around her. She faces the unfaceable—and smiles while doing so (sometimes).

My daughter has severe autism and epilepsy. These two factors make our life very different from many other people's. There are things we have to go through that are just extra special in very non-special ways at times. Her EEG testing that is happening this week is one of them. But before I talk about that, I want to tell you another story:

Over Christmas break, we went for a little trip to the hospital for dental work. This girl can't hold still properly for x-rays neither can she hold her mouth open well enough to get her teeth worked on normally, so we just head to the hospital every couple of years for them to take care of her. It's like a day spa for her mouth where they put her to sleep until they finish. Or something like that!

So we arrive at the hospital, get checked in, and I help her get into her hospital gown. Then we wait but not for long. After just a few minutes, the oral surgeon and his understudy (can't remember what they are actually called), along with two observing students from some university in California, all crowd into the tiny room with the large hospital bed that she's on, and we begin talking about what will happen. In the course of this discussion, they each get to know my daughter a little bit because she decides that they all need knuckles and high fives, and the resident (understudy, not sure) got a mini back rub on his shoulder that she could reach. All the while, she's acting like she's at a party as the one guy is putting in an IV, for crying out loud! But that's not the best part.

The best part is when she starts telling her knock-knock jokes. Her two knock-knock jokes. Over and over and over.

They didn't understand her the first time she said it, so I translated for her, and they all gave a courteous laugh. And then . . . she says her joke again . . . and again. She mixes in one other every so often, but she definitely has her favorite. So what happens next is hilarious. These four grown men begin to take turns telling knock-knock jokes because she assigns them turns saying, "You turn" and pointing. She makes certain she gets to tell her joke after each one, but the turn-taking goes viral. One guy turns out to be an avid knock-knock joke teller from his high school days. Another has his phone out doing searches to be able to one-up my daughter and these other guys. And you know, she won the contest. I know this for sure because when we all were laughing when the punchlines came around as we were walking down the hallway to the surgery room, one of them turns to me and says something to this affect, "You know what makes it so funny? She says it like she's telling the joke for the very first time every time. That makes the joke genuinely funny—every time."

Her delivery is on point every single time. And that's true across the board. That girl is so sweet and happy and wanting to help. When she's having a hard time, she's not, but everyone has their moments. But she is quick to recover.

After they wheel her through the surgery doors, I was consulting with the dentist, and some time later, one of the observing students came out to the waiting room to tell me that she was telling her knock-knock jokes until she could no longer speak from the anesthesia putting her to sleep. That girl!

So back to the EEG.

She does not like getting poked and prodded. And really, who does?  It took over an hour to mark her head and glue the electrodes to her scalp. This proved to be a real struggle for her since she had to stay awake for it. I bribed her with the promise of a treat, and then the tech got smart, and she bribed her with a future treat too. And after that, it wasn't totally smooth sailing, but this brave girl found courage, patience, or strength, whatever it was, to work through her autism struggles and make it possible to get the job done without us feeling like she's being tortured.

While she didn't get to telling her jokes, she did find her smile again before we left the hospital.

There are things we don't like going on around us and being thrown at us, but that shouldn't keep us down. I can't always find my smile, but today, she taught me that I need to work harder at that. I need to be brave and smile sooner than later.

P.S.

Here's her most favorite (most repeated) joke:
Her: Knock-knock.
Anyone who will reply: Who's there?
Her: Boo.
AWWR: Boo who?
Her: Dont' cry. It's just a joke.

SOLSC 2014: Sick and Tired

My sweetie girl who has autism is sick. With my other children getting ill is not that big of a deal, but with her it is. She can't express how she is feeling, so a great deal of direct supervision is necessary to make sure she doesn't have a seizure, keeps on breathing, and gets better. Before now I haven't really thought about all that I have to do to take care of her when she's unwell. And the only reason I even started thinking about it is because I've been exhausted physically and mentally over the past several days. The majority of my day was spent caring for her and nodding off whenever she was resting. It reminded me of how people tell young mothers to sleep when the baby sleeps. Well, I 'm here to attest that it is good advice even when your baby is seventeen years old. I'd be totally psycho tired right now if I hadn't taken those couple of cat naps.

It's funny how we just do what is required of us and don't think about the details until there are adverse effects. I am so grateful for this girl and all the light and learning she provides that it never seems like work to help her. However, my yawning and inability to focus on anything when I do have a chance to think is proof that there is a toll being taken.

Hopefully tomorrow we will see a turning point and she will be well again! 

a perfect and priceless moment

We get into the car, and of course the music must be blaring for a truly authentic Mom Time. What was not expected was when my Sweet 16 with autism says in a loud voice, "Rock out!" when this song came on:




Naturally, I yell out an emphatic "WOOHOO!!" and proceed to sing and dance and rock out along with my big girl and Selena Gomez like any other mom and daughter would do as they drive down the road to get a bite to eat.

I think this might be one of my favorite songs now. If it gets her past the autism and able to talk, it's a favorite in my book. 

Awesome Autism Blog

As a blogger and parent of children with disabilities (ADHD counts even if the federal government won't offer services for it), I currently follow several blogs concerning the daily challenges faced by parents of intellectually disabled children. I address special needs issues from time to time on my own blog as well. So, since I am immersed in this SpEd world, I want to share some of my insights gleaned from a particular blog: Yeah. Good Times.

I wouldn’t normally read a blog so faithfully that has such heavy doses of swearing, etc. throughout its pages, but this mom has a way about her that is endearing. I came to be acquainted with Jill through Twitter and it was all over from there. Her honest wit charmed me.

First and foremost, Jill is a great example of advocacy and loving the child no matter what—even when it was just said (wrote on a blog for the world to read) how much a behavior and all its entails might drive her mad.  I have learned a great deal about what it means to step up to the advocacy plate that I did not realize people have had to go through. Don't get me wrong, I've had my fair share of messed up situations to deal with, but I only had my experiences from which to draw until meeting up with Ms. Jill.

My perspective has also been enlightened on what I have tolerated but probably should not; hence, I have changed my stance on when and when not to say something to those who obviously do not have children with a disability.  Along with parental discernment, more than once her words have guided me to understand some of the teaching concepts I am learning as an educator. I believe I will be a more capable general education teacher because of how she has enriched my views and understanding of what parents go through each day to help their child feel successful in the school environment. 

Her unfettered display of humanity provides a sense of community for which I am grateful. Being a parent of children with special needs can be challenging because we get feeling so alone and isolated unless we find/create a circle of support. I have joined in her online community a few times, and when I had a rough spot (Heartbreak Hotel: Lunchroom Edition), she put the word out and her community came to me. I felt so blessed in my misery. Her taking that bit of time to share my words caused a wave of encouragement that continues on.

By reading blogs, such as Yeah. Good Times., I have been able to raise my level of awareness when I didn’t think I could raise it any higher. 

Pro Tip:
If swearing and drunkenness is offensive to you, just scan past those parts like I do and you still get all the benefits of her wit and wisdom. She is decidedly worth it.

Heartbreak Hotel: Lunchroom Edition

I was volunteering at the high school yesterday for my teaching stuff and got to walk in on the last of lunch time with my daughter who has Autism. She was sitting alone. Most of her life skills classmates were standing along a nearby wall hanging out and talking, but she wasn't. She was just sitting there--alone--people-watching. Part of this situation can be attributed to the fact that she doesn't know how to insert herself into conversations/groups. She always waits for an invitation. The other part is something I just don't know how to discuss without stepping on people's feelings; however, her solitary existence struck my heart as I approached the table, and I must say something.  

I was unprepared for the deluge of emotion that overcame me. Questions and tears. Disappointment. Wishing for so much more for this precious child of mine. I don't understand why no one would want to sit with her. She is sweet and kind. To be more specific, she truly knows no guile--only purely honest simplicity of heart and being.  She can't talk much but if you just sit by her she'll tell you how pretty or cool your shirt is, give you a mini back rub, and work so hard to say something--anything. Why wouldn't someone who knows her from classes or church think to befriend her? Why wouldn't those individuals have an empathetic response? Would they like being alone at lunch time?

I think it begins at home. Why don't more people talk to their children about inclusion of those with disabilities? Do they not see my daughter and others like her as children of God too? Why is it so difficult when it really could be simple? She is simple. She doesn't ask for anything whatsoever. All that would be required is whatever they would give.

A lot of what I have heard is that people feel uncomfortable because they don't know what to say to someone who can't respond typically or that they are afraid of the autistic behaviors--such as personal space boundaries, etc. Let's be honest: sometimes it is awkward; sometimes it is weird. But who cares? EVERYONE has done awkward, strange things within their lifetime. It's just all piled together for years on end with Autism. All that really needs to happen is for people to recognize a disabled person's humanity and compassion and empathy would come. I just know it.

And you know what else? It really doesn't take that much effort to bring your group of friends over to sit with someone who doesn't comprehend much of what you're saying, laughs at all your jokes (even if they aren't very funny), and, to top it all off, you never have any risk of them gossiping about you behind your back because she doesn't know how. I would say that's a steal of a friend. A real bargain. A treasure beyond price.

This mother's heart cannot comprehend this at all.

related link:

Wanted: Awareness, Respect, Acceptance

Friends Share This With Friends

memoirs of a tricycle

The years go by so quickly. A shiny red tricycle is now rusted and worn, but has had many a rider since it found a home. Everyone is almost too grown up to ride it, but I keep it to remember. I remember why it was purchased. This particular tricycle was the largest tricycle we could find at the time, plus the most durable. I remember tying her feet to the pedals to help them stay on. I had hoped so hard that my big little girl would learn how to do something normal before overgrowing her birthday gift. When I look at our tricycle now, I remember she never learned how to ride it. I remember the tears I shed mourning how she could not learn--not even how to do something fun. Then, little brother wanted to learn how to ride. He was afraid to even try, but I would push from behind always reminding to keep his feet on those pedals. I remember the joy on his face when he learned how to pedal without me beside him. Then, little sister rode it a few times, but mostly sat on the back steps like a seat while big brother and friends drove her around like the diva she has always been. When I look at our tricycle now, I remember how her tiny legs could not reach the pedals and once they could she wanted to ride big bikes instead--and did it. I remember her wanting to ride it once she was too big and doing it so she could say she used to ride it all the time too. Baby brother can ride it now, but rarely does. He likes to walk or run instead of working that hard to get into motion. I remember sharing it with friends and neighbors when they would come to visit, decorating it for a bike parade around our street, and now using it to decorate our porch. It has been there through all the stages of childhood and is a part of the family. I will always remember the joys and defeats it has seen and how it has always been there with my children and me.

Lighting It Up Blue

the sky is blue today ~ all around the world ~ for you

April 2nd is World Autism Awareness Day and I celebrate it in honor of my sweet daughter. She has rocked my world for over fifteen challenging and lovely years. I have learned many lessons from my non-verbal, overgrown toddler. I have learned how to love the kind of love that is forgiving at all costs--even true lovingkindness. She knows no guile. She does not hold a grudge. Whenever a sibling or friend gets in trouble (especially when in trouble for being mean to her), she gets back-talking in her 18-24 month old way about how mean and rude I am for disciplining the guilty party. She will grumble or even yell out No, mom, no! Mean, rude, mom. [Child's name] no mean, mom mean. etc. It causes me to laugh a little because she is so loyal to everyone, even if she was the one who tattled to me in the first place.

You know this girl is your friend by her desire to talk to you, even if she can't do it very well at all. She tells people she passes by Your shirt's pretty--boys too. men and babies too. I have had to teach her to say Your shirt's cool for males in order to keep teenage boys from looking at her like she is insane. One thing I have to say about the people who do know her, they know she loves them and they are all so kind and sweet to her. It brings peace to my heart seeing teenagers come running over to her just to say hi or give her knuckles (another one of her specialties).

I have been blessed immeasurably by being part of the Autism adventure and I hope you might want to learn more about it if you aren't already along for the ride yourself.

Related Links:

The Brighter Side of Things

My Journey With Autism

WANTED: Awareness, Respect, Acceptance

Friends Share This With Friends

I cannot bring myself to move on from the topic of Autism Awareness. When pondering on what to blog about today, all I want to do is work to spread my photographic essay farther and wider than what has already occurred over this past weekend.

These children and adults need friendship. It might seem overly simplistic, but it is the truth. It can be difficult being a real friend to someone who doesn't really know how to talk or be a friend in return. It might be a challenge to apply patience and understanding with someone who freaks out on you because of some normally small problem. And by problem I mean you could be wearing an irritating color or it is windy outside or anything in between.

Hearts are broken at this very moment in homes across the globe because someone with ASD is friendless. It could be the individual or it could be members of their family because they can see how others don't reach out or want to be their family member's friend. I know my daughter is oblivious to the fact that she never gets invited to birthday parties or the movies. No one calls to come hang out with her. She is fifteen years old. She is non-violent. She loves attention. Though on the other hand, she doesn't know how to start or keep a conversation going; she has epilepsy (scary); she can't even ride a bike or swim or read on her own. What would a potential friend even do to be her true friend? I don't have the answer. I could tell you a laundry list of things I would like to have happen, but unless it comes from the heart of the giver it won't happen. It hurts too much to wish sometimes.

With awareness, sparks of courage to be that special friend can and will get lit in the hearts of typically developing people and the broken hearts will mend.

My hope for changing the world for the better, one person at a time, can only be fully realized with the help of others. Or in other words, I need YOUR help to spread the message. I am not directly connected with everyone in the entire world. It is an impossibility. But, I am connected with some people, and those people are connected to other people, and so on.

I ask those of you who read this today to please be bold and share a message that can improve the lives of the individuals and families affected by Autism Spectrum Disorder (ASD).

Please share this link today: 

WANTED: Awareness, Respect, Acceptance 

WANTED: Awareness, Respect, Acceptance

As a parent of an individual with Autism Spectrum Disorder (ASD), I must admit how much I have grown from the life lessons dished out over the years. I know, without any doubt, I am a stronger person due to the challenges overcome, knowledge gained, and heartaches endured. ASD plays a large part in shaping my perspective due to the frustrations caused by this complicated intellectual disability.

The following photographic essay touches on one of the tenderest spots for me and most people who deal with autism, in any of its forms. The project has been geared toward school-aged teens, but is quite appropriate for any age group's viewing enjoyment.

Many thanks goes to the son of @Asperger_Mom, @SarahMPottratz, @1863_Project, @byronNME, and @AutismMumma for sharing their thoughts so freely and providing me with fuel for my inspiration.

Create a photo slideshow

I ask for your help in spreading this vital message.
Please share it with everyone you know, so we will create positive change--today--in the world around us.

*For best viewing, choose full screen mode and don't forget to pause music player at the bottom end of the blog before hitting play*

The Hunger Games and Memorable Connections

Making memories with people has always been a crucial aspect of my life. Some memories have been so good I wish I could hold them in my hands, while others have wounded me so deeply that I am a different person due to the action-- and I can't really help it. Those negative memories are the ones I push aside and consciously look the other way when their ugly little faces pop into my recollection. I must admit that I have been able to identify with and even help countless friends, acquaintances, and strangers because of my life's memories. So, for that reason alone, I do not hold complete disdain for the bad ones. I choose to forgive, try to forget, and use the experience to serve and lift anyone who crosses my path.

In The Hunger Games series by Suzanne Collins, many memories are made between Peeta, Katniss, and Gale. There is hunting, gathering, talking, kissing, and the thrilling, chilling Games. I wasn't sure how I would like the books prior to digging into the series, but love them I do! I have special memories of staying up late just to read more and talking with friends about the plot and mad writing skills of Suzanne Collins. Mockingjay drove people to near argument and frustration and I won't ever forget it. Reading the books is a pleasure, but I also look forward to the movie that comes out this year with anticipation.

I love many lines from all the books. Yet after reading each of them, I would say one of the most telling lines comes from page 32 of The Hunger Games:

My Journey With Autism

My Journey With Autism...Thus Far

after the diagnosis
against all expectations
within a few years I inched
toward comprehension of this unknown thing
by means of reading and studying anything I can get my hands on
except I cry sometimes
along with celebrating the milestones
in spite of those milestones not being in "proper" order
into high school she goes
out of my protective sight
beyond my control
around kind people most of the time
unlike anything she has done before
amid doubts on my part
for all children like her
onto the bus she goes
instead of having her stay home
since I know it will help her-- and bless everyone who sees her

Monkey Number One Has a Birthday

Source: icanread.tumblr.com via Nicola on Pinterest

Although most people think to apply this Shakespeare quote to romantic love relationships, I share it with you today in honor of my dear baby {L} who still can only consistently express this understanding through her smiles, back rubs, and her knowing eyes at now fifteen years of age. 

Simple Yet Very True Advice

As a parent of a disabled child, I identify with much of the advice included in the link below and feel like it is worthy of sharing with all of you. I know not everyone fits the description, but I would bet you probably know someone who does and this could help them. So if it doesn't apply to you, pass it along. You might save a friend/family member's sanity.

When the hard times come for me, I KNOW that these tips do help you survive because I have either done them and felt the benefits or suffered needlessly (obviously recognized in hindsight) because I did not do them.

7 Survival Tips for Parents of a Seriously Ill, Disabled or Injured Child

p.s.
I include a label for ADHD because these tips fit the bill for dealing with the bad days (weeks, months, etc.) for that too. I know from personal parenting experience.

My Sweetie Girl

My 14-year old autistic daughter went to a Girls Camp for a half-day trip and came home over-the-top happy. Girls her age go to this type of camp for five days, sleeping there and she went for half a day, yet still comes home with all the buzz of a week long camp excursion.

The Brighter Side of Things

Over the past several days, I have been pondering on the many cute, funny, and interesting things that come with Autism. You always hear about the problems, the less than desirable behaviors, the issues. Plus, there is that all encompassing label that must be placed upon the individual in order to get them the interventions, therapy, and other services needed to get functioning at top performance (for her/him anyway).

Autism and Injury

My Autistic daughter hurt her ankle in NOVEMBER and nothing showed up on an x-ray, but she was still complaining and still complaining so I took her to the doctor again in December and nothing showed up on the x-ray, but she was still complaining in January so I took her to the doctor a third time and the doctor ordered an MRI of the ankle.  Between rude dentists and office staff not doing their job, we finally got in for that MRI today.  You might wonder what ding dong dentists have to do with anything, but that is an even longer story and I just can't go there if I want to keep this a swearing-free blog.

the drama of life

I don't know how everyone else's mornings go, but here is a snapshot of how pretty much EVERY SINGLE SCHOOL DAY MORNING goes at my house:

I wake up. I wake up my oldest son. I wake up my two daughters. My oldest girl* wakes up right away and starts talking about school, the bus, eating breakfast, getting dressed. I then tell my other daughter to wake up again because she is always still sleepy, but then she gets up too. I then proceed to go re-wake up my oldest son.  I go get dressed or start making sandwiches, then go re-wake up that little monkey again**.  He whines about how he is tired and I either yell at him and take his blankets away or give him a pep talk that sounds like this, "Son, don't you want to be happy?  Why do you continue to make our mornings miserable?", etc. He gets up, proceeds to mock and bother his younger sister and by this time our little preschooler is awake and participating in the tag teaming on the poor girl sandwiched between them in the birth order of things. Then, we eat breakfast, my big girl gets on her bus, and between the three younger children there always seems to be someone irritated, yelling, or whining until they leave for school. 

Is this normal people?  I seriously have to tune it out, remove myself from amongst them at times, and pretty much feel like I am surrounded by people who do not care one whit what I am saying to them. 

I might sound bitter and angry, but it is only temporary.