Friday, December 9, 2016

Christmas with Autism

Christmas time, the most wonderful time of the year! Or is it?

Choosing a Tree, 2015
My fifteen-year-old son Tate has autism. He is excited about the approaching holiday. He does look forward to Christmas, but not for all the same reasons many of us do. 

For many of us, Christmas means family gatherings, jingling bells, shopping, baking, visiting, wrapping, music, colorful lights, evergreen trees, and maybe even snow. The wonderful smells, sounds, and sights are a welcome vacation from a regular routine for the majority, it seems.

But for some of the autism community, the festivity assaults the senses and causes distress. The gatherings are too invasive, the smells and sounds disturbing, the sights unsettling, and the break in routine almost agonizing.

Parents, who long before a diagnosis, may have dreamt of Christmas photos with Santa, trips to seek out the perfect evergreen, and Tonka trucks under the tree, come to accept a different reality. The Santa at the mall terrifies their child, a trip to a tree farm is out of the question, and that Tonka truck is only ever used upside down, to spin the wheels.

There will be no big feast on Christmas day, eaten around a large table, surrounded by family, for the family member with autism. He has a different kind of Christmas. He wants --No. He NEEDS-- to eat in his room. Alone. His cousins ask why he won’t play with them. His grandparents wonder why he cannot hug them. Some relatives raise their eyebrows at the way he’s being so “coddled”. It’s hard to understand if you do not live it.

And then, there’s the gift giving and receiving. Some of the things my own son has asked for over the years are challenging to find. The ring from “The Lord of the Rings” movies is a current wish. A hover-board (that really hovers) like Michael J. Fox rode in “Back to the Future” is on his Christmas list this year. The tablet of Ahkmenrah that brought the displays to life in the “Night at the Museum” movies was once on his list. Of course, I can often find reproductions of these kinds of things and those are sometimes accepted without disappointment. A friend crafted a replica of that magical tablet that brought the museum exhibits to life, and Tate loves it. I am dreading the day he asks for the invisibility cloak from “Harry Potter”. There are some things even Santa cannot do.

Many children with autism are similar to my son and very interested in movies and the props. A lot of kids with autism become very focused on other things. I commonly hear about preoccupations with dates and history, technology, video games, math facts, dinosaurs, trains, super heroes, weather, or ocean life, to name a few.

Some people with autism have interests that are more notable. My own son is captivated by our washer and dryer, but had a love affair with the vacuum when he was small. We had very clean floors for years. Now our laundry hampers are never allowed to become full. I have met several in the autism community who have similar stories about their children and a fixation on household appliances though, so this is not really rare it seems.

However, interests can be more unique. Two different people have told me recently that their children with autism have a fixation on ceiling fans, the different models, and how they work. Another has a child interested in rotary dial telephones and their parts. Yet another parent told me their child is interested in lawn mowers, even memorizing the model numbers. One child is enthralled with Boeing aircraft, and ONLY Boeing. A friend in Pennsylvania told me last week that her son is fascinated by elevators. On his Christmas list are elevator parts. He wants button panels and indicator lights. Seriously. His heart’s desire is to have an elevator parts collection. What is a mother to do? Anyone know of an elevator parts graveyard she can visit? 

What are some of the things your children with autism are interested in? How many mountains have you moved in the past so that your child could have that special gift under the tree? We want to hear your stories. 

If you liked this post, you might also like to read about another holiday: When Halloween is not about the candy

Wednesday, November 23, 2016

Thanksgiving Feast or Dinner Roll?

Thanksgiving. It is such a special time of year: a time of reflection, a time for reuniting with family, a time to share in a feast that we all enjoy so much. 

Wait. Sometimes holidays like Thanksgiving are not enjoyed by all. Thanksgiving for some people with autism is a virtual nightmare. The break in routine, the smells, the noise, and all that hugging, is enough to cause a lot of anxiety. 

For so many of us who are the caregivers of a person with autism, a large family gathering is a time to dread the conversation at the family meal, because we know it has the potential to revolve around the lone dinner roll on our kid's plate. All that delicious food and our kid takes a dinner roll. He does not eat turkey, would never try something green or orange in color, and would physically gag if you were to put a vegetable on his plate. And so he and his dinner roll become the topic of conversation. Again. And we are bombarded with questions, made to feel guilty and defensive, and given advice about feeding our child. 

We hear: "Have you tried making him take one bite?" And we respond with the best vomit story we have, because we HAVE thought of that and have tried it more than once. It did not work. We have to reassure great aunts and distant cousins that we have indeed taken our child to the doctor and he is physically very healthy, living on his diet of bread, potato chips and cheese pizza. And then we hear the most dreaded comment of all. It's the one that makes a lot of us moms bite our lip until it hurts. "If he were to get hungry enough he would eat". How hungry is "hungry enough"? One time my son went three days when he was three years old. He had a sore throat and didn't take a bite of food for three days. Think he was hungry enough? Other autism moms have similar stories. We HAVE tried all the things you could possibly think of to try, but autism wins, every single time. Autism wins. Our kids are different than your kids are and were. 

Thanksgiving, a time to be thankful and count our blessings. I, for one, am very thankful for a son who has taught me to be a kinder person, a more patient person, a more giving person, a more loving person, and a more tolerant person. If you have someone in your life with special needs who refuses the feast this year and goes to sit with their dinner roll, please remember that his caregiver is doing the best that he/she can and would love to talk about almost anything at the dinner table except the lone dinner roll on his/her child's plate. 

Note: This was written with many people in mind and because of the dozens and dozens of stories I've heard from my readers. It is no reflection of my own situation at this time. My family has long since accepted Tate's eating habits and are very understanding of it all. 


Monday, November 14, 2016

Stims: Good, Bad or Ugly?

When Tate was diagnosed with autism, I did not know anyone else with autism. I had no idea what the right thing to do was, nor if there were any treatments. I quickly began educating myself about autism. I read many books and surrounded myself with people who could help us. We began ABA and tried our best to use “best practice” methods. Forty hours a week of discrete trial and incidental teaching, redirecting stereotypic behaviors, and teaching social skills. 

I did have the Internet, but social media was not yet a “thing” when Tate was three years old. For that I am grateful. Shocking, coming from a mommy blogger who loves nothing more than interacting with others from the autism community isn’t it? Let me explain. 

If I had turned to Facebook and mommy bloggers for my information, I'm afraid I would have done many things differently. And if I had done many things differently, Tate might still be stimming his day away and unable to do so many of the things he can now, twelve years after his diagnosis.

So many autism parents today, in the name of autism acceptance, are telling us not to try to change our children with autism. The politically correct thing has become “Don’t ask a child with autism to step into your world. You should step into his.” The thing is… mom and dad will not always be there. The child with autism is going to grow into an adult with autism. And all those things that you did not ask him to learn, and all those things he did not have to give up (because he has autism) have the potential to make his adult life so much harder. The stereotypic behaviors could make him a target for bullies. Those things you did not ask him to give up are likely going to be ingrained and a huge part of his day.

According to so many autism moms who are blogging, their children with autism NEED the stereotypic behaviors. They say the behaviors serve a purpose. Some even suggest that we should stim right along with the child. 

The sensory issues are real. I get that. I get all that. Tate NEEDED to do those things too, when he was small. But those things were getting in the way of his learning. And he NEEDED to learn. I chose the hard road. The majority of the stimming NEEDED to go. One of the hardest parts was that when one stim was eliminated, another often took its place. But we kept at it, gently trying to mold and change the way our son dealt with stress, boredom, and excitement. 

Tate wanted to run back and forth on his toes, from one end of the room to the other. I put things in his path and redirected his attention. All. Day. Long.

Tate wanted to look at his reflection in the oven door, the television, and mirrors for long periods of time. I covered the oven with a towel, the television with a fitted sheet, and took down the mirrors.

Tate wanted to use books to fan the pages for thirty minutes at a time. I made sure he stopped and looked at each page or we put the book away.

Tate wanted to wave his hands and wiggle his fingers. We gently took his hands and put things in his hands to hold and tried to keep him busy playing. 

Had Tate’s favorite stim been head banging until his forehead bled, no one would think I was a tyrant for redirecting it. Had his stim been to bite himself or others, my efforts would have been approved of as well. Would he have NEEDED those things? I drew my line way before those things though, so I have been told I am not accepting of Tate or his autism. HA! I’d step in front of a truck for my boy and I’ve worked so hard to help him. It would have been much easier to just let him stim. 

I heard from a mom recently with a son about ten years old. She had been trying to convince a therapist that her son NEEDED to stim and it was cruel to ask him to stop or to reduce the amount of stimming he engaged in. Because the therapist would not agree, the mother thought the therapist did not understand autism. It could be that the therapist understands autism better than the mother.

What if I had not redirected all the stimming when Tate was small? What if I had given up because it was so hard to do? Our lives would have been so much easier for those preschool and early elementary school years, for sure. But what about now? Tate is six foot, three inches tall. Any stimming he wants to do now, would be impossible for me to deter. He still occasionally stims, but it does not take up large parts of his day, nor does he rely heavily on it to entertain himself. His go-to stim now is pacing, which he does when he is nervous. He sometimes stiffens his body and uses his hands to push on his legs when he is bored or anxious. But those things do not consume him like his stims did when he was small. Would he have eventually outgrown it all on his own? 

I suppose he might have stopped or reduced all those stereotypic behaviors on his own. I could never prove he would not have. I was unwilling to take that chance. All those hours I redirected the stimming were not wasted either way, because every minute Tate was not stimming, he was learning. I was teaching him: how to pretend, how to read, how to interact with others, how to use verbs, pronouns and prepositions, social skills, turn taking, how to tell a joke, and so much more.

I know how hard it is to redirect stimming. The enormity of the task is intimidating. If you choose to try to eliminate the stimming, you may become discouraged at times. But, do not let the moms who are engaging in stimming with their child, in the name of autism acceptance, deter you. It may be that many of those kids will someday be six feet tall and their moms will be wishing they had eliminated or reduced some of the stimming when they were very young too. 

I didn’t “cure” Tate. I'm not making that claim. But I did help him to “fit in”. I do not understand the mind-set of so many parents in the autism community lately. Asking a kid with autism to conform is not abusive. One of my favorite quotes is the one that tells us not to judge a fish on its ability to climb a tree. But, I did not ask my fish to climb a tree. I asked my fish to swim faster, harder, and be a stronger fish, something that would be politically correct for a typically developing child, but not for a child with autism these days. And yet, we autism parents are often asking the world to treat our kids as they would treat any others. 

Perhaps there is no true right or wrong answer about the stimming. Or perhaps we will not know until this group of children who are encouraged to stim have grown into adults. Perhaps these children will be far better off and healthier than my son who was constantly asked not to stim, or to choose a more subtle stim at times verses an obvious one. Perhaps there will be no difference at all. 

Friday, November 4, 2016

To Be The Best Caregiver I Can Be

November is National Family Caregivers Month. My fifteen-year-old son Tate has autism and my youngest daughter has special needs as well. Currently, I am also helping to care for my elderly parents. I was asked to write a post about being a caregiver. I took a stab at it and read it back to myself. I had written an essay that sounded like I was having a pity party about the all the time my kids’ disabilities have stolen from me. So, I tried again. The second attempt was an essay comparing the amount of time and energy I spent raising my typically developing children to the amount of time and energy it is taking to raise my special needs children. It really did not reflect the way I feel about being a caregiver at all. My third attempt was also sent to the trash bin.

It occurred to me then: I had been trying to write about the hardships of being a caregiver. There is no doubt it is hard. Everyone knows that. But what good caregiver dwells on all the negatives involved? Did my own parents keep track of all the times I woke them at night? Or vomited in my bed? Did they begrudge the money they spent on my education? Of course not. Good parents are not keeping score of all the difficulties they have with their child, or the sacrifices they make.

A good caregiver is a good one because he does the things he needs to do willingly. So I made a list. I made a list of the things that help me to be the best caregiver I can be in hopes that it might encourage others to be the best caregiver they can be.  

1 Laugh. I laugh when things are funny, and they often are. There have been times I have laughed to keep from crying. Remember to laugh. A sense of humor can make all the difference.

2 Smile. It’s hard not to be happy when I have a smile on my face, and it is hard to become angry or be unkind when I am smiling. A smile can totally change another person's response too. 

3 Sing. Just like smiling, it is so hard to be anything but happy when I am singing. Music is such a valuable tool. 

4 Cry. If laughing, smiling, and singing are not going to work today, a good cry might. But if you find yourself crying often and unable to cope, talk to a professional. 

5 Share. Find someone who will listen. Online support groups can be helpful when no one is physically close. I blog and have built my own sort of support group of followers who help me far more than I help them. 

6 Find a cheerleader. I have many cheerleaders. Some of them are part of my physical family and some are part of my church family. Some are online friends. Do not go to discouragers for advice or for cheering up. Do not go to the support groups that mostly talk about the hardships and the negatives when you are in need of encouragement. Surround yourself with positive people. 

7 Set goals, but set reasonable ones. It is helpful to have short-term goals. Some of my goals are very small and easily achieved in a day's time, while others might take a few days. It might even help to write goals down and be able to cross them off as they are completed.

8 Prepare yourself. It is much easier to prevent problems before they develop, than to fix them after they occur. I try to anticipate the things that might go wrong, and put a plan in place for the “just in cases”. When it is time for appointments or meetings, go prepared. Make and take a list of questions and concerns.

9 Control yourself. I cannot control others, but I can control myself and how I react to others. Remember that you are responsible for you.  Do not make matters worse by speaking in anger, or saying something you may later regret. There will be times when those around you who you had hoped would help, will not. There may be times when you feel resentful, if not because your child is disabled or your elderly parents are sick, then because the ones you thought you could count on to help, do not. But the kids still have to be fed, the sick still need to be looked after, and the trash still needs hauled out to the curb. It is up to you. You cannot control those around you, but you can control yourself.

10 Dismiss yourself. Sometimes I need a few minutes to regroup. When everything around you seems to be falling apart, take a deep breath, count to ten, say a prayer, bite your tongue, or walk away.

11 Forgive yourself. I make mistakes. I make a huge mess of things sometimes, and you will too. Nobody is perfect.  ♫ Let it go. Let it go. ♫  

12 Do not lie to yourself. Face your truths. Dwelling on the things you wish you could change will only make you miserable. Also, pretending problems are not really there does not work. Roll up your sleeves and do what you can to make things better. The grass is not really greener next door. That neighbor or friend who seems to have the perfect life with the perfect kids and a pocket full of money, has his own struggles too. 

13 Reward yourself. Whether it is something small like a soda, or something more substantial like a night out, I find that it helps if I have something tangible to look forward to at the end of the day or at the end of the week. 

I'm not an expert. I have made plenty of mistakes, but these are the things that help me to do what I do best. Perhaps these things could help you to be the best caregiver you can be too. 

Writing this has helped me to remember that being a caregiver is a privilege and a worthwhile and fulfilling job.

If you liked this post, you might also like this one...  Stepping Up To The Challenge