Tuesday, October 27, 2015

Tate's Toothache and My Pity Party

I try hard to be an encourager. The world needs more encouragers. I especially try to be positive when I am speaking to parents of children with autism who are coming behind me. Those with kids younger than Tate need to know that it is not all doom and gloom after the autism diagnosis. But sometimes it is hard. I was born a pessimist. Pessimism comes naturally to me and “looking on the bright side” is something I have to work at. Think Winnie the Pooh’s friend Eyeore and you will have an idea of the way I often think. I have to fight through that gray little rain cloud that is right over my head. It’s just who I am. However I am also someone who has been able to overcome some of that because of lessons Tate and Sydney have taught me. There really are blessings to be found in the face of adversity.

I don’t sit around and feel sorry for myself too often. I simply have too much to do. But yesterday... Yesterday I had a pity party. In attendance were myself, and Tate from the future. He was with me as I sat and cried. He was a middle-aged man and I was a bent old woman. I was still trying to help him brush his teeth and find his shoes. I was still helping him in all the ways a mom helps her child. Her young child. Her five-year-old child. And he was six foot three inches tall.

My pity party began in the dentist office bright and early Monday morning. We were there because I had “guessed” Tate had a toothache. He cannot / will not tell me when he is in pain. He does feel pain. I am sure of that. On Friday Tate made a few references to teeth. They were out of place and seemed odd. But Tate has autism. Let’s face it. Much of his conversation on any topic is odd. Saturday morning Tate texted me that I should take his brother to the dentist to get a cavity fixed. I thought, “Oh, Tate is trying to make a joke.” He hates dentists and he thinks he’s sort of insulting Levi by saying something like that. It’s Tate’s way of teasing. But then there were several more references to the dentist. By now I should have caught on. And then Tate did something Tate VERY rarely does. When I quizzed him about all the references to the dentist and asked him what was up. He admitted that he MIGHT have a problem with a tooth. He asked for a Tylenol. That’s a pretty big deal around here. First thing Monday morning I called the dental office we use and took Tate right in. I like all the staff there. The dentist Tate normally sees was out and we saw another. There, explaining to the dentist that my son appeared to be a young man but she should probably try to communicate with him like she would a five or six year old, my eyes began to leak real tears. I went on to explain that Tate does not tell me when he is in pain so I have to guess. As the dentist investigated to find the problem, I sat and thought. I remembered that when each one of my children were small I had to be vigilant and know when they were hurting based on behaviors. It’s just what good moms do. As my children aged they could tell me when they hurt and eventually they could take care of themselves. My four oldest children are adults. They make their own doctor appointments and bandage their own wounds now when necessary. They don’t call home to tell me about their minor illnesses. They don’t need me in that way anymore. Tate is not there though. Tate will never be there. Tate will always need me and there will come a day when I am not there. I’m 38 years older than Tate.

My pity party was not just about Tate not growing up on the inside as he grows taller on the outside. It was about me. When my kids were little and they hurt, I hurt too. A mother’s empathy for her children can cause her to hurt physically sometimes. As they aged and they were able to take care of themselves some, my empathy for their pain was not nearly as intense as it was when they were small. Over the weekend when I thought Tate was hurting and he was relying on me to identify the problem and help, I hurt for him. Because Tate is never going to grow much older on the inside and be able to mature like his siblings did that leaves me forever stuck feeling the kind of empathy pains for him I would have for my toddlers.

I love the thought from the Bible about everything having a season. Probably the happiest time of my life was when my kids were all small. But now it is time for them to grow up and for me to enjoy them as adults. They will be giving me grandchildren in just a few years. And I will still have an adult sized six-year-old to care for. Life’s not fair. So yesterday I had an emotional meltdown. Several times in the afternoon I broke down and sobbed for the Tate I will never know. The man he will never become. I felt really sorry for myself.

Today is a new day. His sore tooth turned out to be related to a broken wire and twisted bracket from his braces, not a cavity. It’s fixed and his pain is gone. My worries about his pain are gone and my spirits are lifted. Today I am not sitting with the future Tate dwelling on what will never be. Today I dropped my sweet son off in front of his school and as the car door closed I said, “I love you Tate.” I expected to hear, “I love you too.” Instead I heard, “I know.” As I pulled away I smiled ear to ear, happy that he knows he is loved.

For more about trips to the dentist, click here: Cleaning, Filling and Straightening the Teeth of Autism

Tuesday, October 20, 2015

When Halloween is Not About The Candy

At our house we are counting down the days until Halloween and have been for quite some time. My fourteen-year-old son Tate has autism and he has been texting me reminders about Halloween for months. (See his "checklist" below.) Tate tells me often that Halloween is his favorite holiday. If someone had told me nine or ten years ago that Halloween would someday be Tate’s favorite holiday I’d have been sure they would be wrong. 

The Pumpkin Patch is a Smith
family tradition.
Although Tate did enjoy our annual trip to the pumpkin patch, that was one of the only things he liked about Halloween. When Tate was small he was terrified of the costumes hanging on racks at the stores. We avoided the aisles that displayed the masks and Halloween decorations. The evening of October 31st, Tate’s dad took his siblings trick-or-treating and Tate and I stayed home. Tate’s older siblings had to be careful to leave their masks off their faces until they were out of the house. He just didn’t seem to understand the masks did not change the true identity of the person behind them. Mask off and the kids standing in the room with us were his beloved brothers and sisters. Mask on and they took on the identities of strange princesses, super heroes, and ghosts. Usually, his brothers’ and sisters’ costumes were quite tame but it did not seem to matter much. Tate did not appreciate them at all.

Tate's Kindergarten Halloween Party
Because Tate was in an early intervention program and attended a preschool with typically developing peers, he needed to wear a costume for the school’s Halloween party. The classes walked to several neighboring offices for treats and I wanted Tate to participate. I realized it would be an invaluable learning experience and Tate needed to be able to step outside his comfort zone. But I knew convincing Tate to wear a costume was going to be a bit challenging for us. I had to come up with costumes for Tate those first few years that were similar to his everyday attire. A mask would have been asking too much of Tate. It would have been sensory overload for him. Tate loved hats so I used that to our advantage. That first year of preschool Tate was a cowboy. That required me to buy absolutely nothing as he already had boots, a hat and a western shirt. I’m not sure Tate even understood he was dressed “in costume” that year at all. The year after that he was a magician. I bought a top hat and a plastic wand and attached a small piece of black fabric to the shoulders of his shirt. He actually enjoyed carrying the wand and did not seem to mind the cape at all. In Kindergarten I dressed Tate completely in black, used a washable marker to draw whiskers on his face, put a red and white striped hat on his head and told everyone he was The Cat in The Hat. I feared he would not cooperate when I suggested we use a marker on his face but he surprised me! It helped that Dr. Seuss was Tate’s hero at the time I’m sure. We went through a period of time that year when only Dr. Seuss books were allowed on his bookshelf.

Tate 2013
By the time Tate was in second or third grade he had determined Halloween is a pretty fun holiday. Jack-O-Lantern carving is a highlight of Autumn in Tate's mind. He also loves to dress up in costume now. His ideas are usually original too. Two years ago he told me he wanted to be a remote control for Halloween. I panicked because I knew I was never going to find a remote control costume and Tate, once his mind is made up, is hard to sway. I bought some black and white felt and spent a Saturday morning with my sewing machine and Tate had a remote control costume.

Tate is making sure his Dad
knows who is taller. 
This year my 6’3” son wants to be a skeleton. As we walk from house to house to gather the candy he will not eat, I will celebrate the progress he has made. I know eventually he will be “too old” chronologically to trick or treat, no matter his developmental age. But for at least one more year we are going trick or treating with all the other kids who love Halloween.  For a lot of kids it is all about the candy, but the only candy Tate will put in his mouth are m&ms and Hershey’s chocolate bars. So for Tate it is not about the candy. It’s about the adventure. And THAT is huge when you live with autism.

To appreciate the list you might need a little background and you have to understand that Tate can hold a grudge for years. I believe it was two years ago that we put off going to the pumpkin patch until late October and then the weather was bad so we bought our pumpkins at Wal-mart on a Sunday. Sundays are for going to church in Tate’s world and pumpkins should only come from pumpkin patches, and never be purchased on a Sunday.  

Friday, October 9, 2015

The Faces of Friendship

There you are in the grocery store, the face of kindness. My son is walking beside me as I push the cart and you walk quickly to catch up to us. You are shopping with your mom too. You call my son Tate by name and greet him enthusiastically. Tate mumbles a response, barely looking your direction and wanders on ahead. You tell me that you go to school with him and when I thank you for speaking to him so nicely and I try to make an excuse for his lack of interest in you, you say, “Oh I know. That’s just how he is.” You call, “See you at school Monday Tate!” and as you walk away, my heart sings knowing there are peers like you who genuinely like my son for who he is, autism and all.

There you are in the school auditorium, the face of consideration. My son and I are attending his sister’s school play. We find our seats in the school’s auditorium. You come, dragging your mom by the hand, and sit beside Tate. You speak to him and introduce him to your mom. I ask Tate to introduce me to his friend. He says he does not know your name. I cringe inside but smile, hoping you understand. I tell you that Tate has trouble matching faces and names. You tell me you already know that, assure me it’s okay, and you politely introduce yourself and your mother to me. You try your best to engage Tate in conversation and you make a little progress, while your mom and I listen and make a little small talk over the tops of your heads. I am very impressed and thankful my son is learning social skills from peers like you.

I am at the Junior High school, sitting in seventh grade Science class. I've been invited by your teacher to hear Tate give his presentation on the solar system. You are there, so many of you! You are the faces of encouragement. Tate stands in front of you proudly, a big smile on his face. It never occurs to him that you might not be impressed with his modified school work or the presentation his Paraprofessional helped him to put together. Your presentations were much more detailed and they were done independently but you show Tate the same courtesy you showed the peer that presented before him and the one who comes after. My heart melts knowing you respect my son and make him feel like a part of your class regardless of his abilities. I so appreciate you!

There you are in a department store, the face of compassion. I’m out shopping and feel eyes on me. I look over to see you smile and you ask, “Are you Tate’s mom?” I say that I am and you ask me where he is. I tell you he is home. You tell me you eat lunch with Tate sometimes. I tell you how much it means to Tate’s family to know the kids at school are so kind to him. You smile and tell me it is fun to eat lunch with Tate. You add that you have learned more from being Tate’s friend than he has learned from you. I ponder this, as I know Tate is not what most kids would consider “fun” or is he able to do the classwork that the rest of you can do. He is hard to converse with, sometimes seems rude, he does not understand social cues, and he performs below grade level in every subject. But you know that. You know how he struggles to understand friendship yet how much he needs friends. You know how he struggles to process language, especially when it is spoken quickly. You are willing to be the kind of friend a kid with autism needs, a friend who has to give more than they receive, a friend who has to slow down and give Tate time to process before he can respond. And you are okay with that. My heart swells with gratitude.

This evening I need to find the face of understanding. We have come to a music program. Tate is to sing with his classmates. I hoped you would be here at the entrance to the school and I see you walking in right ahead of us. I stop you and ask you if you know where Tate should go to find his group. You tell me you know exactly where to go and you say, “Come on Tate. Follow me.” I call to you as you disappear into the crowd, “Thank you!” I feel blessed and relieved to be a part of this community where I can find these willing faces all around us.

I see you at a school picnic, the faces of acceptance. Tate’s class voted and chose to go fishing at a lake as their end-of-the-year-event. We considered skipping it because Tate is not interested in fishing at all. He does not like to get dirty and I figure he will most likely spend the evening asking us how much longer we have to stay. We decided he should go and as our family pulls up to the lake, several of you approach our van, calling Tate’s name and asking him to hurry and join you. He says, “My friends are here.” He follows you to the gathering and we bring up the rear. My heart smiles at the knowledge that my son has friends. He has friends and he is accepted, autism and all.

As a part of the autism community I often hear of prejudice, intolerance, hate and bullying. We’ve seen very few of those things in my son’s life. Perhaps it is because we have been open about his autism diagnosis since kindergarten. Perhaps it is because we made sure his classmates were educated about autism. Perhaps it is because of the lunch buddy program and the other social coaching programs his peers have participated in with him. Perhaps it is because we live in a small town and a close-knit community. Perhaps we just got lucky and my son has a class of exceptionally caring peers whose parents have taught them about friendship, kindness, consideration, encouragement, respect, compassion, understanding and acceptance. Perhaps it is a combination of all of these things. 

If you liked this post, you might like to read Building Tate's Friendships.

Tuesday, October 6, 2015

Walk Away

I have a fourteen-year-old son with autism and I am very active in the online autism community. The question has been asked of me more than once lately: If you meet a small child who is showing signs of autism, should you tell the parents of the child that you suspect he might have autism? There are a couple of things to consider for sure. How well do you know these people? And how sure are you that your input will be welcome? Unless the parents are folks you know very well and they have asked for your input, you might want to consider biting your tongue and walking away. And honestly, even if you know the parents extremely well you should consider just walking away with lips tightly sealed. Does my answer surprise you?

It is not the answer I would have given ten years ago when I first entered the autism community. Back then I wanted to share my newfound knowledge with as many people as possible. It is the answer I give now though because of the experiences I have had. I have lived and learned. Yes, I am aware that early intervention is the key. Yes, I am aware that many people do not even know what the signs of autism are. Yes, I am aware that a young parent of a first child might have nothing to compare their child’s development to and need some guidance. But I am also aware of a few other things. The shock and disbelief you will probably encounter from a parent when you suggest something may be “wrong” with their child will build a wall between you and them that cannot be knocked down easily. That wall could keep them from coming to you later for advice when they are ready to seek help. Offering unsolicited advice or even a suggestion about seeking a diagnosis might do irreparable damage to the relationship you once had.

If you find yourself wanting to offer unsolicited advice to parents you do not know very well think about this: You probably do not have enough information to make any credible suggestions. Perhaps they already have a diagnosis or a similar diagnosis. Perhaps they do not want one. Perhaps it is none of your business. I did not think about these things when my son was newly diagnosed and I found myself wanting to enlighten those around me. I found very quickly that most people want to keep their feet firmly planted in denial as long as possible. There is something to be said about the bliss of ignorance. I myself often long for the days before I knew what autism is. I was one of those parents who would not have appreciated someone else trying to tell me about autism before I was sure I needed to seek a diagnosis. For a while I forgot that about myself, or maybe I just did not consider how others might feel similarly.

Put yourself in the shoes of the other parent (or maybe you have actually been there already). Have you ever had anyone walk up to you and suggest they know something about your child that you yourself do not know? A parent can go from friendly to defensive, or even furious, in a heartbeat. Would you walk up to a parent at their kid’s ballgame and suggest their kid needs to spend some additional time practicing at the batting cages? It probably would not be met with a friendly attitude. Would you offer parenting advice to parents in the grocery store because their child is misbehaving? I would not recommend it. Would you ask the parent of a child who is limping or stuttering what kind of therapies and doctors they had been to about their child’s “disability?” I can imagine the parent would not appreciate it.

I would make a few exceptions to my rule for not interfering. If the child in question were a relative I would mostly likely offer the parents some literature to read and try to have a conversation with them about early intervention or the signs of autism. If they were not receptive then I would not push. Probably nothing good would come of it. Of course most of my relatives are very educated about autism already because they are a part of Tate's life. 

It is hard. It is hard to see the signs of autism in a child, know what needs to be done to help, that early intervention is the key and time is ticking, and know you have so much knowledge you could impart, and still walk away. It is harder for some of us than others. When you are introduced to autism, you begin to see it all around you: the awkward gait, the lack of eye contact, scripting, inappropriate play, repetitive behaviors and social delays. I have to remind myself often, although I know what autism looks like, I am just a mom of a child with autism. I am not a doctor. I am not qualified to diagnose autism. I also have not been invited to give my two cents. And I walk away.

Tate and Sydney, age 3 and 1
If you do find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, NEVER NEVER NEVER say to the parent, “I suspected that your child had autism.” This actually happened to me and has happened to others I have spoken with. There is the initial hurt of knowing others “knew” but did not tell you. For me, even after I came to realize I would not have been receptive had that friend come to me earlier than I was ready to hear the word “autism,” the hurt was still there. It was sort of “’I told you so’ only I didn’t tell you” and it was so humiliating and painful for me. If you find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, and you are tempted to say, “I knew something was wrong earlier than you did.” then think again. If you bit your tongue in the first place and never said anything then BITE YOUR TONGUE this time too.    

Note: I’m sure I will be hearing from people who tell me they disagree and they were very grateful for advice they received. How without the unsolicited advice of a neighbor, friend, relative, or stranger, they would never have gotten their child the help they needed. I realize I am not the authority on this subject and I realize there are people who do not become offended when someone offers them information about autism. However, I still believe that MOST people would rather not receive unsought contributions from others about their children’s well being. This is just my humble opinion. As hard as it is I try to bite my tongue and walk away.