Plastic and Stuffing and Love

Misfortune struck our home this morning. If you are fond of Sydney let me warn you: This is a sad story. You’ll need to grab a box of tissues and sit back. 

If you’ve followed our Facebook page long at all you will know who Riley is and probably even remember Liberty from stories long ago. But just in case you need the background: Sydney has had a doll since she was toddler. Her name is Liberty, named after one of Sydney’s friends from preschool. Liberty has been pulled for miles in wagons, ridden on the back of bikes, swung for hours on a tire swing, pushed in strollers up and down the driveway, and gone on many family road trips. She has been carried, dragged, hugged and loved a lot over the years. I have washed her, repaired her, Febreezed her, and detangled her hair many times. Liberty has become quite unsightly, a raggedy mess in fact. But looks do not matter to Sydney. Others recoil at Liberty’s appearance but Sydney still loves her. I had many times tried to get Sydney to transfer her affection to a newer or more attractive doll. Sydney has several nicer dolls but none meant nearly as much to her as Liberty…. until she met Riley. A year ago in March Sydney and I were shopping. Sydney had some money to spend. She usually spends her money on farm toys like tractors and plastic animals. But this day Sydney saw a 20” baby doll she just knew she could not live without. Riley was named before she was even removed from the packaging. It was love. And for the past ten months Riley and Sydney have been nearly inseparable. (Liberty is still loved too but she mostly hangs out at home these days.) The only place Sydney goes without Riley is to school but if it was allowed then Riley would be sitting right beside Sydney every day at a desk of her own there too. Riley has not just become a part of our family, our friends have grown fond of her. Riley almost never misses a worship service and Sydney often asks one of the ladies from our congregation to hold Riley and tend to her while Sydney goes to Bible class. The ladies have played along so often and talked with Sydney about her doll on so many occasions they notice if Riley is not in attendance. Sydney loves the attention the ladies give her through Riley and the ladies love to give Sydney that. 

Liberty, after years of being loved

Sydney with Riley out to dinner

A road trip with Sydney and Riley

Riley rarely misses a church service

Birthday gifts!

Now, for the real story: Got those tissues? Yesterday was Sydney’s birthday. After school Sydney and Riley jumped on the trampoline, swung for a while, and then took the stroller for a walk. Shawn got home from work and Sydney ran to greet him, leaving Riley unsupervised. A few minutes later, Sydney’s older sister drove in. Sydney’s excitement was intense. It was time to start our birthday celebration! And in all the excitement of our family birthday dinner, cake, candles, phone calls from siblings who live in other states, opening gifts, and putting together a couple of new little toys, Riley was forgotten. Even at bedtime she was not missed and Sydney had a sort of campout in her sister’s room. This morning Sydney could not find Riley. I helped her look. Her brothers helped her look. Sydney told me more than once, “This is making me nervous.” and I reassured her that Riley was fine, just under a blanket somewhere or behind something. We looked in the car. Twice. 

I asked Sydney if she could have left Riley outside, thinking back to the last time I remembered seeing Riley the afternoon before. And I started feeling slightly ill as I began to imagine the worst. I asked Shawn to go outside to look around the yard. I could hear Sydney upstairs calling Riley’s name, looking again. I looked out the front window as Shawn bent over to pick something up. He was way out at the edge of the yard and I could not quite see what he had. Then he bent over to pick something else up. And although I could not see clearly, I knew. I knew our two puppies had found Riley. I knew how badly Sydney was going to feel and I knew there was nothing I could do to shield her little heart from the hurt it was about to experience. As Shawn got closer to the house I could see he held pieces of the doll. There would be no washing, repairs or patching I could do. I frantically tried to think of something I could do or something I could say that would protect Sydney from the truth. And then Sydney came down the stairs telling me Riley had not yet been found. I stepped between Sydney and the window. Sydney looked at my face. I saw fear in her eyes. I told her there was bad news and Riley was not okay. And then my little girl, who almost never cries, even when in pain, began to sob and choke out, “But I love her” over and over. I picked Sydney up and went to the rocking chair where we bawled and rocked together for a long while. This fifty-two year old, rational, somewhat cynical, experienced mother cried like a baby. I kept telling myself I was being silly, crying over a ruined toy. But I was not really crying over a ruined toy. I was crying over my little girl’s anguish. I could not take it away from her. So I shared in it.

I know. I know. A doll is just plastic and stuffing and this is ridiculous, blown way out of proportion. But if you can think back to your childhood and the most prized possession you owned all those years ago, then you might get an inkling of how important Riley has been to Sydney. 

As the tears subsided this morning I asked Sydney if she would like to go shopping to try to find another doll. I remembered the store where we’d found Riley and knew it was likely we could find an exact match there. I knew I might also have luck online. It took a while for Sydney to warm up to the idea of a replacement. I suggested we could even pretend the second doll was the same doll and this day had never happened. Sydney did not think that would be possible. But as the day progressed I could see the pain lessen. 

We did go shopping. And we were able to find a doll that is an exact match. And although Sydney insisted we choose a different name (because this was NOT Riley) before our day was through we had all accidently referred to the new doll as “Riley,” several times, Sydney included. The new doll was named Kennedy initially but now we are told she is actually Kennedy Riley and will be going by Riley mostly.

I am reminded of the Disney movie Inside Out as I look back at the day we just had. Ironically the character in that movie was also named Riley. The movie’s message was: We cannot always protect the ones we love from sadness. Sadness is an important part of life and we all need to experience it to grow. Without sadness would we really even know what true happiness feels like?

Steve and Murphy

Tate sent out a text message today to spread the news about Riley. I thought nothing about our tragic morning was worthy of a smile until I read Tate’s words. And before you ask: No. There will not be a funeral, flowers, Cheetos, or Pretzels. 

This was not our first tragedy. We've had broken hearts before. Breaking Bad News

Dos and Don'ts After an Autism Diagnosis

My kids (left to right): Tate, Titus, Emily, Isaac, Sydney (above), Regan, Levi, Bailey

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.  

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Tate at Preschool

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.    

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other. 

Tate's poor motor skills and refusal of foods
often meant someone needed to help him.
Older siblings were always willing to help.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

If you liked this post you might also one of these: It's Not Such a Bad Life or: 15 Truths of Parenting Special Kids or: There is No One to Blame.

Autism Increased My Vocabulary

When my youngest son Tate was diagnosed with autism I knew almost nothing about autism. I began to read and research desperately. I often had to stop and find a definition for many of the words I was introduced to. Some of those words became part of my daily vocabulary after that. For a while now I've had a list of words on my computer I planned to define in a blog post for those who are just entering the world I now live in. As I began to work on the post I had an idea. I could also illustrate the words. It's been a lot of fun compiling the words, defining them in my own words and then illustrating them. 

Here they are in no particular order. Thanks for reading!

If you find any errors let me know and I will edit the photos and/or text. -Lisa
If you liked this and would like to see more of my posts be sure and visit www.quirksandchaos.com

Hobos, Goosebumps and Wiffle Balls

When my youngest son Tate was diagnosed with autism, he was around two and a half years old. Our story is similar to a lot of others I’ve heard over the years. There was an initial frantic search for services and therapies, years of early intervention that were hard to pay for, then denial that my son would be forever handicapped. Much progress was made and there were hopes of a “recovery” and then finally, there was acceptance.

Some days are a little harder than others. Most days we do okay. A sense of humor helps. A lot. Knowing we are not alone also helps. I like to blog about our experiences in hopes that I can make things a little easier for the parents who are coming after me. Lately I’ve been illustrating some of the things Tate does that may seem a bit odd to others in an effort help people understand autism a little better.

At age fourteen, Tate still sometimes misses things that are very obvious to the rest of us. And sometimes he is sure he understands things the rest of us are confused about when the reverse is actually true. Because Tate sees the world differently than I do I am often learning things from him. I have learned to appreciate his unique take on things.  

Below are a few of the illustrations I have made so you can have a peek into our lives. There are many more to come so watch for future posts. 

He technically knew what he was talking about here.

Tate's tries hard to make jokes. He thought telling his sister that she was not really seeing cows was so funny to him. He sure schooled us on what a hobo is too.

Wiffle a ball? 

This is one of my favorite happenings ever. Tate was so excited to share his discovery.

He sure thought he was helping here. 

Figurative language is often a problem for Tate. 

If only we all said what we really mean...

Goosebumps have nothing to do with geese? 

I learned never to try to teach Tate about figurative language unless there are no distractions.

If you liked this post you might also like: There is no ham in hamburgers.

The constant drip, Perseveration

One of the ways autism elbows itself into a family’s everyday life is via perseveration. Perseveration is one of those words I had never heard before my son Tate was diagnosed with autism, almost twelve years ago. It’s a big word that encompasses a lot of things. To perseverate is to get stuck on something and to be unable to mentally shift gears. It might show up as a single word or phrase repeated over and over, or an action performed over and over. A person might wash their hands repeatedly because they are perseverating on germs. Another might quote lines from their favorite shows on television because those things seem to be running on a constant loop in their head.

Some people with autism have very narrow interests and perseverate on those few things they are interested in. It is different than someone without autism who might be zealous about a favorite topic. A person without autism might have an interest or a hobby they enjoy, but with limits. They can put that hobby away and go back to it at convenient times. A person with autism may become so consumed by the hobby that he cannot put it on a backburner. He cannot stop thinking about it or talking about it easily. It drives him.

While raising children without autism I saw some passionate interests. One of my sons absolutely loved dinosaurs and Legos when he was young. We had many books about dinosaurs and lots of Legos. However, he could put them away for periods of time and find great joy in other things as well. He enjoyed talking about dinosaurs and wanted to learn the names of different dinosaurs but he did not talk about dinosaurs for hours each day. One of my daughters was an avid lover of horses. She could have an intelligent conversation about horses but did not force that subject on all her friends daily.

This is one of the texts Tate sent out.

My son Tate’s interests do vary a little. However, when he finds something he loves he gets stuck on that something, usually for weeks, sometimes months. There is almost nothing we can do to help him focus on anything else but the current topic(s) of interest. Most of Tate’s interests are inspired by the movies he sees. Tate perseverates about movies. He has his own DVD library that is quite extensive. He memorizes the cast and much of the dialogue then uses bits of the dialogue throughout our day. Tate is passionate about movies. About two weeks ago Tate decided he was going to need a video camera so he can make some movies. He put this on his Christmas list and began texting his family members pictures of cameras, not just any cameras, but professional-looking television cameras. Keep in mind that money and the value of things is just not a concept Tate has been able to master. He wants a video camera. He “needs” a video camera. I explained that his iPad can actually do the same things a video camera can. I talked to him about all the movies he’s made in the past on the iPad and how great those are. But no matter how much I talked and reasoned, I got nowhere. 

If you do not live with a child with autism then you might be thinking, “So what? Kids “need” things all the time. You tell them, “No.” and move on.” Kids should not be spoiled, getting everything they want. Oh yes. Remember I raised five children without autism before Tate. I have said, “No. Get over it.” more times than the average mother. But telling a kid with autism that they will not be getting the thing they desire is different on a level you simply cannot comprehend until you’ve been there. The constant drip you have heard from an annoying broken faucet is not even going to touch the constant drip and the anxiety that you will witness when a child with autism “needs” something.

After a couple of weeks of knowing Tate expects a video camera for Christmas and me reminding him over and over that it was not going to happen, I led him to my closet. The constant "drip" was just more than I could continue to live with. 

Long before I walked around with an iPhone in my hand, always ready to capture video at just a second’s notice, I owned a small video camera that recorded on 9mm tapes. It hasn’t been used in at least five and a half years. I got the box off the shelf, wiped a layer of dust off, and plugged that old camera into a wall socket to charge. I found one blank tape. Tate stood next to that camera as it charged holding vigil. He beamed and thanked me for “the early Christmas present.” He assured me over and over he knew just how to operate it as he had used one at school before. The instruction manual, also in the box, is written in language that is way over Tate’s head but no matter. I have little doubt that Tate will have that camera mastered in a few days' time. His movies will probably consist of tours of our home and documentaries about the merits of wearing a hoodie. I can almost guarantee he will be taping himself typing notes and lists using the antique typewriter he has been obsessing over lately. I imagine for a time he will be content. The proverbial constant drip about needing a video camera so he can make movies has been silenced for now, his anxiety turned to joy. I’ll take joy over anxiety any old day. I will enjoy it while it lasts because there will be a new drip starting soon enough for me to deal with.

If you like this post, be sure to check out this one: Typewriters and Texts

Also be sure and take a look at Tate's still photographs at The Photos From Tate's Camera.