Sunday, January 31, 2016

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

Wednesday, January 27, 2016

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.

Wednesday, January 6, 2016

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
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