Tag Archives: autism

Back To School

Since my book was published, I have had the privilege of speaking about our family journey in a variety of venues: bookstores, libraries, radio, podcasts, public television, support groups, and community service meetings. Most recently, I’ve been to two locales and realized this is where I want focus my attention: a place I can have the full attention of the audience; where you are specifically there to learn, and learning is in fact is expected. Yes, you guessed it: I’m talking about school.

A few weeks ago, I spoke to a classroom of college students who were each interested (or already working) in the field of autism. The fields of study ranged from occupational therapist, behavioral therapist, and physical therapists. I had no idea what to expect and did not want to talk down to them in the area of autism. Picking and choosing what to say or more so what not to say was just speculation. The professor wanted me to leave them with an ‘aha’ moment. That too was daunting. What could a wrinkling mid-forties woman say to bright eyed, firm-skinned college students? Perhaps they were just really polite, but I can say my talk was well received. Hands went up throughout the whole presentation with delving questions. We got off topic a lot and I loved it.

Later that day, I received an email from one of the students-it was a lengthy email telling me about her life and pursuits-boy is that girl busy! But here is what I loved the most-and not just because it’s about me:

…I just wanted to send this to thank you for coming in today and all of your insight. Being able to hear people’s stories and learn from their experiences is really what drives me to become an SLP. I really appreciated your honesty about the feelings that parents go through when their child is diagnosed and I think it transcends ASD parents…

See what I mean? She got it. The whole idea of why I want to speak about autism is conveying empathy for something you may not have experienced in your own life. If that isn’t the biggest part of learning, I don’t know what is.

My next victims were even more precious: my son’s middle school. If I thought speaking to college students was daunting, the thought of pubescent teenagers kept me up at night, literally. So I brought reinforcements: my 15 year-old super star daughter, who, by the way, has given three of these talks over the years to her own classmates and Ryan’s too. I know: awesome kids run in our family.

Again, I was worried about how to address them without speaking down to them. Kids are way more sophisticated than we give them credit for. I decided I would start by getting them focused on the Acceptance part vs. Awareness and then move to a broad generalization about the disorder of autism. I kept it general because I wanted my son in the room and I didn’t want this to be about him.

Let’s just say I was super nervous, like red hives up your neck, wet armpit, nervous. Because when I walked in, there were parents there, and I hadn’t prepared for that. Maybe it was a good thing to have so many adult eyes on me because it made me conscious of not talking to the students like they were five.

When I asked first off how many had “heard” of autism, every single child raised their hand (and parent too). This didn’t surprise me, but only reinforced a) how smart they are, and b) how permeated the concept of autism has become. So, I drove home the point that all of them had heard of it, so we could move past the autism ‘awareness’ part into ‘acceptance’. A lot of heads nodded and that was enough for me to move on.

I think this next part went well, mainly because they told me they liked it. I brought up five volunteers to explain the five senses and how sensory issues affect almost all autistic people. I had sand paper, slatted sunglasses, peppermint oil, coffee candy and a loud sound on my phone (and my lovely assistant was a big help too). I hoped to show them most people can process things like smells, tastes and sounds, without thinking about it, but to a person on the spectrum these can cause major problems. Especially if language is an issue, and that person on the spectrum can’t properly tell you they don’t like that smell, taste or sound. I think the reason this part was a win wasn’t just because it was a hands on display, but because nothing goes over better with teenagers than seeing their classmates wear funny glasses or smell a strange looking bottle.

So, speaking at schools is a no-brainer if my objective is to spread knowledge. I presumed that before I experienced these two presentations, but being there in person merely confirmed it. So, why do I write this today? No, not to brag (except on my kids), but to ask help. I want to do this more, but getting into schools is tough. I can find a message for everyone because there is a message for everyone. I need referrals or teachers or PTA’s to request me to come in. So put the word out-won’t you?

After all Autism affects 1 in 68 children. The more we focus on the younger generations the faster acceptance can really begin.

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Autism Month

Note from Me: There has been a long gap in the posts to this blog. My apologies. I’m working on a second book, fiction this time, so I think my brain and daily clock only allow me a certain word count. But since it is Autism Month I felt compelled to share some thoughts.

I’ve spent the last few weeks gearing up for Autism month-which started yesterday (and today is Light it Up Blue – World Autism Day- so hope you put out your blue light bulbs). I’ve been reaching out to my community, schools, libraries, etc., to talk about Autism. It’s something I am passionate about as many of you know, as my son is on the spectrum. If you didn’t know, scroll down farther on the blog and read snippets from the book I wrote about our journey. Or you can order it on Amazon (The e-book is on sale now for World Autism Day). Purchase on Amazon

A few weeks ago I was invited to a Facebook group of “Autism Ambassadors”, who are also reaching out to their communities. I was asked for a quote for an article about Autism Acceptance and it got me thinking more about Autism Awareness month and how it relates to Autism Acceptance. (See link a the bottom for that article) I think we all can agree, the awareness part is sort of ‘been there, done that’. Twelve years ago when my son was diagnosed that wasn’t the case. For those who read my book, I talk about a store employee that didn’t understand what I was saying when I explained my son was autistic, after he had the mother of all tantrums. Her reaction was “Oh, how great”. Clearly she didn’t comprehend the complete melt down my entire life was at that moment, nor what Autism meant. Since then, I think most people are pretty aware of autism.

But, it’s not the aware part I’m focusing on anymore. Acceptance is what I’m after. And it’s seems to be a common theme in the Autism world today. Acceptance comes from knowledge and I plan to teach anywhere I can, starting here.

I’m going to give you some homework today: Go to Google and type ‘Autism Acceptance’ and choose just one of the many links. If you have someone with autism in your life, your story could be much different than those you read about and can broaden your perception. If you work with people on the spectrum, it will hopefully demonstrate how different each child is. Or if you have no one in your life, I guarantee you will learn something.

Then if you will, take any insight you have gained, put it out in the world, in your own way: share an article you read; put a quote on social media; talk with a typically developing child who may not understand it yet-they are going to be the best ambassadors for change. Change can happen but it starts with you. If you can broaden your mind, you can most certainly help to broaden others just by talking about something heard about, but not quite understood.

I thank you for attempting this homework. And if you don’t have time to get on the Google, just click the link below, you will learn quite about from this article. More to come…

 

Article for Autism Acceptance (Yes, my name is spelled wrong, actually it’s only part of my name, so just get over it-I had to.)

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Home

Home. It’s not always a place you live. Sometimes it’s a place you feel like you belong.

Home can even be a place you go to watch a movie. For the first time in a long time, I wasn’t apprehensive or thinking of contingent plans for attending an event I wasn’t sure Ryan would be interested in. I knew the theater would be filled with people who would understand if he was being rowdy. I knew he would be surrounded by people who had walked some part of his journey or ours.

No matter the location, home is a place you feel like you fit in.

Last night we attended a screening for a magnificent film “Normal People Scare Me Too”.  It’s not just magnificent because Ryan was honored to be in it, it’s superb because of the content and the people who created it. Made almost entirely by autistic people it’s a film that has a life force all its own. Asking people on the spectrum directly what it’s like to be autistic, what would you change, and what is your future? You will be surprised by some of the answers and cry for others.

I, too, am blessed to make an appearance in the movie, to answer some of the questions Ryan couldn’t. I hope some day he will tell me I got it right. But sitting there surrounded by this community, I felt completely sure about how I responded. I saw nods of agreement in some of my statements. I was heard and understood. I was home and I was comfortable.

The first time our faces hit the screen, Ryan gasped, “Mom, it’s you!” Then when he realized it was also him, “Oh, it’s me! That’s me!” My heart grew three times its size. What a thrill it must have been for him to see himself in a format (the big screen) he loves so much. I hope that memory stays with him and propels him into following whatever path is his.

At the end of the film, the filmmakers, Keri Bowers and Taylor Cross asked the “cast” in attendance to stay for a question and answer session. Ryan was getting a little worked up at that point and fidgety, and he must have asked 15 times if it was time to go. In any other place, I might have had a twinge of guilt that he was disrupting the people around him. Not there. Not surrounded by those who have walked my path. No one stared at him or shook their head in annoyance. Even the wonderful young man next to us, would look over and nod his head with a sweet look on his face, and I got the feeling he was thinking “I know man, this is taking forever.”

Being the parent of a child on the spectrum, you spend a lot of time worrying about how your child will be perceived. Over the years, I have tried to rise above worrying about other people; but it’s still there-more often than I like to admit. To have an evening out with our whole family, with no worries or stress about how Ryan would react, was in a word: priceless. To share our story and hear the other stories of these amazing young people, buoyed my spirits and left me with hope for our future.

I must tip my hat to Keri Bowers for a quick second.  I have to acknowledge that a big part of my comfort zone was created by her and her complete empathy for me and the others there.  Her son, Taylor (who made the movie) is on the spectrum and she has blazed a path for so many of us.  She could also see Ryan losing interest and didn’t care one bit.  She took her time engaging all of us on the panel, all with ease and grace.  Her warmth surrounded me completely.  Thank you, Keri for making me feel at home.

There are some truly awe-inspiring people in the world, some of them happen to have autism. I met a few of them last night. I hope you watch the movie and revel in them too.

(For more about this film check out the website http://www.normalfilms.com. Buy a copy of the movie, you will truly enjoy the interviewees and walk away enlightened; weather or not you know someone on the spectrum.)

ry and lee in NPSM2

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Change…

Change is hard. It usually involves having to do something differently than you have been accustomed to; like trying to eat healthy after a long holiday season filled with gluttony.

For most people on the spectrum, change can be quite difficult.  I used to think it was my son’s kryptonite. But, as he’s matured, and with proper prompting he has done better with new situations. Even last minute surprises are not as problematic as when he was a toddler and we were first figuring out how to deal with his outbursts.

Now, instead of lashing out at unexpected variations in his day, I see him turning internally and spending more time alone. I think this is a typical pre-teen reaction to transformations. And I think it’s good he is trying to process. Yet, I recall Jenna dealing with “teenage things” and asking me questions or turning to her social circle to figure out the world. Ryan doesn’t do this. He doesn’t ask me the types of questions Jenna did, like: “Why won’t she talk to me, I don’t know what I did wrong?” Or: “Why did she move away, she was my best friend?”

Ryan is more a big picture guy. The things that affect how he moves through his day matter most. Like, losing his therapist that had been with him since he was four. Nothing bad happened to her (thankfully), she just moved on to a new job. But this change is big. I would consider it big for anyone who had worked side by side with someone for eight years, but for Ryan is could potentially be catastrophic. His whole apple cart could turn over. Luckily she coordinated her departure to coincide with the holiday break from school; so he had a good transition period. And we prompted him like crazy that she wouldn’t be there when he went back.

Not to say he didn’t grieve for the loss of her, but he didn’t ever ask me why she left or inquire when she would come back, like Jenna may have asked. Maybe I didn’t give him the chance because I was so afraid of what the change would do to him that I kept talking about it. Maybe he didn’t have the time to worry because I continually reassured him it would be okay. Either way, I did notice him spending a lot more time in his room.

During that same school break, also came his orthodontic braces. For any kid having a metal bracket attached on each tooth is no picnic. There are many sensations in your mouth at once: the thickness of the brackets and how they tear at your cheeks and the tightness the metal causes on all of your teeth just to name a few. Coincidentally, Jenna was getting hers off the exact same day Ryan’s came on—the irony of that was not lost on any of us. But, I anticipated she would be a good visual to show the final result. Plus I thought I needed to tell him something tangible that the braces would do, so I told him we needed to make his teeth strong so he could continue to eat his favorite snack. He did great while getting the braces on: sat nicely and stayed calm–I was so proud. It wasn’t until later that evening when I realized how long he had been in his room alone when he came to me and said. “Okay mom, I’m ready for my new teeth.” As if the braces could work that fast.

Every time he tried to eat he practically cried from the pain. Ryan is a tough kid, so for him to say something hurts, it must be really bad. Needless to say, he didn’t want to eat much. And I heard the phrase “You have to take these braces off” a lot. He spent more time alone in his room those first few days. Processing: I assumed. Then, it was time to go back to school and he pepped up. I hoped he had found his way to deal with the braces. Ryan is one of the very few kids who wants to go back to school. He loves the routine, the schedules and the predictability. Even minus his life-long friend, he went back willingly. Even with the new braces inserted in his face, he was ready to roll.

Well, that’s enough change for now—I thought. Of course it wasn’t. We received notice that his school is closing. Let those words sink in for a minute. His school is closing at the end of the year.

For those of you who read my book, there is a considerable amount of time I discuss finding a school for Ryan when the public school was no longer an option for us. There are only so many schools in our immediate area and the continual ‘no’s’ I received were just one painful slap in the face after another. So the thought of finding another place that could fit all our needs, is to say the least, daunting.

More change… Will he handle it? Can he handle it?

He has heard us say the school is closing, but I don’t think he gets the finality of it. I don’t think I get it yet either. And I’m not ready to prime him for this change. Again.

So, what we do now is: pray; keep our fingers crossed; throw coins in a fountain; blow on dandelions; and send all the positive “vibes” we can to people in charge of Ryan’s school to keep it going…somehow.

I can keep the faith, and make wishes—that is what got me this far. But, sometimes I just really hate change.

 

 

 

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Paint can’t take it away

Reflection can sneak up on you at the most unexpected moments. One would presume nostalgic contemplation at graduations, weddings and funerals. But, I had a moment of surprising melancholy yesterday in Ryan’s bedroom.

Now that he is in sixth grade and almost a teenager, I thought it was time to upgrade him to a big boy room. We asked Ryan, if he indeed wanted a new room and he unexpectedly said yes—as ‘no’ is his favorite way to respond for most queries. We happily showed him pictures of bunk bed/desk combinations and he picked one we all could agree upon.

Next, I spread out the paint color-wheel like a dealer in Vegas and asked him which color would he like his walls to be. He stopped me mid-spread and said with a firm tone, “I still want the tree.” I knew immediately what he meant. When we moved into our house the former owner had hand-painted Winnie the Pooh’s Hundred Acre Tree from floor to ceiling in the corner of the room. It is a definite focal point and apparently meaningful to him and I was almost relieved he still wanted it. Like it would preserve some of his childhood.  I also found it remarkable he could convey that he wanted to keep his tree and it most certainly signified an emotion I wasn’t sure he had: sentimentality. This big boy upgrade was proving to be quite eye-opening.

Once the tree was settled, he looked at the paint samples and I learned that he picks paint as quickly as I do. Hey if you see what you like, you just know. He pointed to a brilliant blue called “pool party”.  Seemed a perfect color to me, and the name just evoked lazy summer days by the pool. (Someday I will fulfill a life dream where my job will be to envision names for paint colors. I have so many ideas…)

A few days later, I decided to be safe and ask him once more about his color choice. I opened the color wheel to the “family” of blues he chose and again his finger flew to pool party. I was relived he picked he same one and wasn’t randomly choosing color. So, for good measure, I asked one more time before the painters came. I even tried to mix him up, but he diligently scoured the wheel looking for his pool party and again chose it. Done. Plus, I knew if I asked again I would probably get yelled at.

Bed ordered; paint picked: it was now time to clean out the little boy room. I began to find things I hadn’t seen in years: sentence strips for his picture schedules (‘Play with Michelle’, ‘Eat breakfast’, ‘Go to school’), pieces to games he played while in therapy, piles of keys and coins he no longer collected. But it wasn’t until I began to peel off Velcro strips that the memories over took me.

I sat down where his ‘therapy’ table had stood years before and saw the blue line it had left on the wall. Right above it, a large hole that was probably the outcome of one of his angry tantrums. I rubbed the spot and felt a surge of sadness knowing this dented drywall would be patched up and painted over.  It worried me those memories could someday be washed away too.   The many days he spent there with his therapists working hour after hour; learning his colors, letters, signs, numbers, facial expressions, and eventually his words.   All the time he worked in that spot so he could figure out how to ‘fit’ into our world, truly humbled me.  I don’t know if I would have worked that hard.

Even though new furniture will sit where he once did; I will remember that little folding blue table where it all started. With people who painstakingly patiently taught him again and again; people who have left this earth and people who still work with him today. I vow to not let a new color cover my memories of the uncertain times early in his life. Because those are the times that made him and us, who we are today.

I hope I never forget how far he has come; and in a few years when he moves out on his own, reflect on this stage and all he has accomplished.  I can safely bet I will be just as touched then as I am now.

 

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Talking Letters

I was graciously interviewed on Monday night by a remarkable woman.  I hope someday to tell her story.  During the interview, I read the following post.  I wrote this a few weeks ago, and just never posted it.  Ah, summer break how you mess with my writing schedule.

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Communicating with an autistic person has more variables than I could ever name.  Due the many degrees of autism (hence the spectrum) you sometimes require many ways to say the same thing.  But one thing is crucial, no matter what you are going to say, keep it simple; especially for a young child with autism.

When Ryan was newly diagnosed, I was on a deep learning curve, reading every article, attending every seminar, talking to whomever I could.  Aside from learning how to control his erratic behaviors, my biggest concern was his language. For I was certain, his loss of language was the key to his frustration with the world.

After a few years of behavior modification, and speech therapy (with the aide of sign language) Ryan was able to retrieve his words. Nothing short of miraculous to us, for then most of his frustration was alleviated.   We were carefully trained to speak to him with few words so he could process them.

I once attended a seminar where Temple Grandin was the keynote speaker. She described eloquently what listening to someone speak was like for her. She said it was like seeing words across a computer screen. If someone asked her a question, she would see the words in her mind and have to “read” them. Hence, it took her some time to respond. And if someone moved on to another question, she had to start over.  Sounded like a vicious cycle to me. But her words stuck with me and I took to heart the instruction of using few words and then…waiting. Needless to say, I still try to speak slowly to him, because I am a fast talker, even though he can now communicate on a level that would fool an unknowing outsider.  It still makes his life easy if I keep it simple.

Ryan recently discovered the captioning on his Kindle. Actually he saw it on my Kindle first and asked what it was. Not a particularly stellar moment for me (I was trying to secretly indulge in a guilty pleasure of “Orange is the New Black”). He was quietly standing behind me as I chopped vegetables while watching and he began reading the dialogue-out loud. Luckily it was an innocuous moment: no nudity or cussing, but when he realized he was seeing the words as they were being spoken, he immediately asked what it was. And then wanted it for his Kindle.   Much as I wish he would use his Kindle for reading, (but really, how could I ask if I use my Kindle for extracurricular too) he mainly uses it for “The Google” and Netflix. He is a master at searching for any show or movie he wants to watch, a modern child, for sure.

After a few days, I hear him narrating a movie he’s watching, not just the dialogue, but parts like “crickets sound in the distance”, “laughter in the background”. When I walked over to see what he’s watching, he says, “Look at my talking letters, Mom.”

Talking letters?

What a brilliant way to describe captioning. After all, they are letters that are showing what people are saying. Why I didn’t think of that?

Ryan reminded me you don’t need a lot of words to describe something. Keep it simple and your message will be heard. This time, he taught me.

Talking letters. Maybe I should copyright that…

 

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Choices

There are seemingly mundane things I plan, coordinate, and perseverate on, like getting my carpets cleaned. I revel in anything that improves the cleanliness of my house.   But something about clean floors is a downright religious moment for me. I come by that mania rightly–my aunts too had that obsession. I remember watching my aunt clean and re-clean her kitchen floor because it was streaky and felt sticky. So glad that trait came down to me. But back to my impending carpet cleaning: my random-OCD acted up and suddenly every inch of carpet upstairs had to be cleaned. I moved everything I could physically muster, off the carpets and into the bathrooms; then enlisted Dan to help me move the heavier things, like chairs and side tables.   I decided as long as the cleaner was here, perhaps he could clean the rugs downstairs too. Oh heavenly clean bliss was about to come my way.

Obviously what follows is, well, wet carpets and rugs.   Our wonderful carpet guy offered to leave his industrial fans to dry my rugs. I was thrilled! It’s the little things remember.

However, when my very routine son comes home and the house is in disarray, all my grand plans float away like smoke. My idea for blocking the stairs with a kitchen chair (so the dog won’t put his yucky paws on my clean carpet) and leaving the shuddering fans to dry the rugs overnight—were about to cause havoc.

At first, I thought priming Ryan would make it go smoothly. I explained the carpets were wet and things had to stay off them, like toys and dog feet. He seemed okay and I had hope it would all be fine-until we got home and he discovered the chair out of place and the raucous fans. Plus, all his toys in the family room had been moved from the distinct places he had put them.

As I started mindlessly sweeping the dog hair clusters the fans had blown from under the couch, I see Ryan making frantic trips back and forth to his toy closet putting toy animals away. I had to stop and concentrate over the din of the fans to realize he was bordering on tears.

How could I have been so caught up in the glory of fresh carpets that I overlooked how it would make it feel? This isn’t my first go round at dealing with change and Ryan–so don’t think me insensitive.  It’s the progress he has made; he rolls with things so much easier than when he was younger. He transitions to changes in plans with hardly ever a batting of his eye. He can tell me verbally when he’s getting upset. But today I’m not sure planning or priming would have helped. It was too loud and too many things out of place. The one thing he finds peace in is coming home to his house with all his stuff where he left it.  It shouldn’t have been a surprise.

I should have watched for his reaction as we walked in the door to the noise and the displacement of furniture. If I could have heard his gasps as we walked in the door, I would have stopped. But, I was deafened by the noise and caught up in the continual job of cleaning. It’s hard to stop once you start.

As I stood there with the broom and a pile of dog hair and watched his disturbed face, I knew I had a choice. I could stop his unease very simply. Though I wanted those rugs dry as quickly as possible, I realized it wasn’t worth it to stress him out. They are just rugs and will probably dry on their own overnight.  And I’ll just have to watch the mongrel dog to make sure he didn’t go up the stairs with his messy self.

Fans were turned off and put aside. The chair was put back at the dining table and I saw a visible change in him. He asked if he could put on a movie and then carefully began placing his toys where they belong. Peace returned.

I sat down to ruminate on my thoughts of choices I make for each of my children.  Simple thins, like how I choose to make their breakfast and lunch every morning (Dan helps too); how I choose to take and pick them up from school; how I choose special treats at the store; how I choose to spend a Friday night with them watching a movie; how I choose their happiness over mine and would everyday.  It’s worth every offering, even my beloved clean carpets to keep them happy.  I will forgo my silly cleanly pleasures–I will forgo anything for them.  And I will do this until I no longer can.

That’s when I heard the dog retching about to throw up…

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The Small Things

Years ago, we purchased bicycles for Dan, Jenna and I. Jenna was finally at the age we felt she could ride between us safely. We were thrilled to take on a family activity like bike riding. We added a child seat for Ryan onto Dan’s bike, assuming Ryan would enjoy it. The struggle Ryan put up getting him in it, and the crying that we had to endure, contradicted any fun for any of us. Needless to say our dreams of family riding times were dashed.

About a year later, prior to a trip to Yosemite, we had begrudgingly decided not to take our bikes, because we had no way for Ryan to particpate, when our neighbor generously offered us a “tag along”. (A tag along is a ‘half-bike’ with only a back tire, handle bars and pedals, that fits on the back of a regular bike.) One does not need to know how to ride a bike to use a tag along, just be able to stay seated. Fortunately, Ryan actually sat on this bike and seemed to be happy doing it. This tag along allowed us to take our bikes to Yosemite, and many other happy destinations. It provided us a sense of security to have Ryan safely behind one of us.

We used the faithful tag along well beyond where Ryan fit on it, mainly because we could not find a suitable replacement and no bicycle shops seemed interested in helping us modify it. Plus the fact Ryan continually refused to learn to ride a bike. However, I am proud to say, this past summer I put my no-quit attitude to test and enrolled him in a bike camp for special needs children. It was truly a test to my mind-set; but after five days of literal blood, sweat and my tears, he learned to ride a bike. (I highly recommend this camp.) Not to say he was happy to accomplish this, but we were. We bought him a beautiful bike and forced him to practice for a while. Yet, we still had the question of his security and riding by himself. So we fell back to the good ol’ tag along. The poor child did not look comfortable by any means, with his knees up to his chest, but he didn’t complain and we kept on.

While on a mini vacation a few weeks ago, which is very bike friendly, I pleaded with Dan to ask a local bike shop what they could to modify the tag along. I know he felt it was another waste of time, but I wanted to try—this seemed like the place for us. We rode to the shop, with Ryan on the back and showed them our predicament. Perhaps bringing Ryan along and showing them his discomfort added to our persuasion. They quickly seemed confidant they could help us, so Dan returned later that morning. He arrived at our campsite victorious, he was truly humbled by the care and time this wonderful shop provided us. They had outfitted us with a taller seat and handlebars—exactly what we had asked other shops for over and over. Ryan hopped on his new and improved tag along and the smile that crept across his face was true bliss. His tag along was perfect–again.

Later that day, we rode to the bike shop, as asked by the staff, so they could see Ryan on the bike: another reason they became dear to my heart. Dan and I gushed too much over their handy work but they were gracious. Did they try extra hard to help us because they knew Ryan was autistic? It doesn’t really matter to me, but I think mainly they are just nice people and saw our extenuating circumstances, so: yes.  In any case, thank you, Ventura Bike Depot.

Sometimes it’s the small things that help people the most. It may not have seemed big to you all, but to us it’s monumental. There are few things our family can do together, willingly and happily, and you helped us get back to it.  We have a new lease on our biking adventures; where we feel safe with Ryan tucked behind, and he is happy to remain there for now.

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Siblings

I thought it fitting to acknowledge National Sibling Day during this Autism Awareness month.  My words may not do justice to how important my daughter, Jenna has been for, my son, Ryan.  Siblings can be the best built-in peer partners an autistic child can have–if the sibling is willing to participate.  Luckily, she has shown a keen interest in him since the day he was born, long before he was diagnosed.  To the point of (mostly his) annoyance, she has never left him alone.  I hear him scream her name no less than five times a day, and I know it’s because she’s teasing him.  God bless her for that.  Yes, it’s irritating, but she doesn’t treat him different and never has–even after she was old enough to know about his disorder.

I have been blessed with three siblings myself, and we naturally have different ways of communicating with each other.  Jenna and Ryan have only each other, and due to his language deficit, Jenna had to first relate to him by his actions.  In my upcoming book, Make a Wish for Me,  I tried to illustrate how early on Jenna was a wonderful ‘mini’ therapist and participated in Ryan’s daily sessions.  But, what I didn’t get to elaborate on is their interactions now.  Then, their relationship was still somewhat simple exchanges.  And she did a lot of “talking” for him as older siblings will do. However, I believe, she really did know how to interpret what he wanted or was trying to say.  I think due to his lack of speech, they found a way to mentally connect, not using words.  I know he did this with me, which is why I think that became their way of communicating.  This initial mental connection has stayed with them.

Now that Ryan has the amazing gift of speech, they have found movie scenes as their way of interacting.  If I had to guess I would say, that’s not Jenna’s first pick.  She probably would much rather do crafts or ride bikes with him.  But, as she learned long ago, in order to interact with Ryan, you mostly have to do what interests him.  So, movie scenes it is.  Again, the annoyance level for me is sometimes unbearable after hearing them act out the same scene for the fifth time.  But when I hear the sheer giggles of joy–from both of them, I can do nothing more than smile.  Smile deep from my soul and thank god they were given each other.

The complexity of their relationship isn’t easily defined, especially by me, because I’m only an observer.  But, what I see clearly is they adore each other.  I truly believe the one person Ryan would miss the most on earth is Jenna.  She is the first person he asks about every day; and if she’s away, he just isn’t himself with out her.  Same goes for Jenna–as she has told me many times unprompted, “Ryan is my best friend.” Although she may not say those words to him, she shows it.  And he knows.

So, today I honor my children as the best siblings in the world.   I thank them both for the love and attention they give each other. May they always be there for each other and never stop laughing.

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This too is temporary

Most parents don’t want to dwell on their children’s deficits.  We want to focus on their strengths and celebrate their victories.  I believe this to be true whether our children are typical or unique.  But in the realm of autism or any special need, sometimes you have to put your cheer leading hat aside and truly acknowledge where your child’s weak points are.  It is a necessary evil if you are going to help them improve.  Being brutally honest is not my strong point, but one I have to turn to more than I like.   I was always taught to focus on the positive of every situation or person.  I strive for this daily and although I’m not perfect, I do believe it is one of my strong points.

To my own fault, I have to fight hard to see the negatives in Ryan or Jenna.  It’s like my positive blinders are made of Teflon. Like my heart won’t let me see them in anything but a glow of perfection.  Because they are perfect to me.  But, when a situation arises and I force myself to come face to face with a shortcoming, it hits me hard.  To admit to myself either one of them can’t do something or won’t be able to for a long time, literally breaks my heart.

I know I am not alone in these feelings.  I  need to remind myself of that, but there are moments in juggling the life of an autistic child, I feel desperately alone.  Even though Dan is an amazing partner, and I have a fantastic support system; it’s just my nature to take things so deeply.  To a dark place where hurt lives and makes me feel so heavy.  I try not to visit that place often, but sometimes I can’t avoid it.  Not when it comes to my kids.  Perhaps it’s because they were once physically part of me that they remain hard wired to my heart.

I will come out of it.  I will put my positive hat back on, and get my boxing gloves out.  But just for a day, I will allow my heart to be heavy and grieve a little for the things my sweet boy isn’t able to do…for now.    I know we will work to change these things.  We always find a way to bring him up, and he always finds a way to surprise us with what he can do.

I will never give up on either of my children and even when I have to face a blip on their map of life, they are still perfect to me.

As a wise man once told me as I was crying upon his departure, “This too is temporary”.

 

 

 

 

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