Autism parents have a lot in common

My son Tate is fifteen. Tate has autism. He was about two and a half years old when he was diagnosed. Parenting a child with autism is challenging at times, but also very rewarding. We have had a lot of interesting experiences over the years and gotten to know a lot of others who are also a part of the autism community. So many of our stories and experiences are similar. I recently decided to illustrate some of the most common and repeated scenarios I have heard about from others in the autism community and/or experienced myself. They are in no particular order.

If you can relate let me know. I will be adding to these so tell me what kinds of things happen to you the most: annoying things, rewarding things, kindnesses shown, and the ways you’ve had to educate others. I would love to hear from you. Contact me on my Facebook Page called Quirks and Chaos. The comments are temporarily turned off here.

We are all in this together!  -Lisa

You might also like this post: You may be an autism parent if...

What is a bully?

My fifteen-year-old son, Tate, is a freshman in High School. Tate has autism. To my knowledge Tate has never had to deal with peer who is a bully. I have a theory or two about the why(s) behind that and you can read about all of that here: A Successful Buddy Program

It is hard for some to believe that Tate does not have a problem with bullies. Many people have told me that bullying is just something their children with autism have to live with. I have had a few people suggest to me that Tate is likely being bullied for his differences, but is either unable to recognize it himself and complain, or that I am just too out-of-touch to know. It really is hard for some people to understand that we seem to have done what is considered "the impossible." There simply are no bullies in Tate's life.

Because the month of October is bullying prevention month, I decided to talk to my two special needs kids about bullying. I asked Tate if he knew what a bully is. He said, "a bully is someone who is mean to kids." I walked away and came back a bit later to ask him to go a bit more into depth about what a bully is. This time he said, "a bully picks on kids." So I asked him what a bully looks like. He told me a bully looks like a big kid who is really mean. I asked him if a little kid could ever be a bully and he said, "yes." I asked him if a grown up could be a bully. He again answered, "yes." So I asked him if he knew any bullies. He exclaimed, "no!" 

I wanted to explain some things about bullying to Tate and his younger sister, and that is best done with visuals for my two literal kids. The following is what I came up with... 

Let me know if I got it right. Are there things here you would change or add? Find me on Facebook at Quirks and Chaos. 

My 15 truths of parenting special kids

1. Parenting a special needs kid does not make you super hero. I seem to have given some of you the wrong impression. I am not supermom, not even close. I rarely cook anymore. Most of the time we all eat different foods at different times, especially in the summer months. I don’t spend enough one-on-one time with any of the kids. I lose my patience and raise my voice occasionally. I feel really successful on the days I keep the laundry done, the house fairly clean, and the kids happy.

2. Parents of special needs kids have a lot of insecurities. Sometimes I don’t know what to do. I’m winging it here. Oh, I’ve tried to read all the right books and surround myself with people who can advise me about my kids’ disabilities but I’m the one who makes the ultimate decisions and sometimes I do not know what the right decisions are. These disabilities are spectrum disorders. There is no one treatment or therapy that works best for all kids with special needs. What if I do the wrong things? What if I miss the things that would have helped them the most? What if I mess this up? Even though we have insecurities, I still believe #3 to be true.

They are so easy to love!

3. (In spite of #2), Parents of special needs kids are experts… on their own kids. I could never claim to be an expert on autism, Fetal Alcohol Syndrome, or ADHD, but I do know Tate and Sydney really well. When a teacher or doctor tries to tell me what is best for my kids instead of asking me to collaborate about what is best for them, we will not make any progress. Spending short amounts of time with a special needs kid cannot begin to compare with the investment the parents have made. Parents of special needs kids want to be asked, not told, how to best interact with their child because WE are the experts.

4. Parents of special needs kids like to talk about their kids… a lot. Something seems to happen to women when they give birth. The number one topic of conversation is no longer clothing, hair products, recipes, or movies. The conversation now revolves around their child. Parents of special needs kids are no different. However, we tend to flock together and talk about our kids' disabilities and therapies and their school situations. I tend to turn almost every conversation I have with anyone, anywhere, anytime, into a conversation about autism or ADHD. I cannot seem to help myself. I am sorry, friends.  

5. Parenting special needs kids is sometimes lonely. I am lucky in that I got to do this five times with typically developing children. But in some ways that may make it a bit harder because I know all the things my special kids and I are missing out on.

6. Parenting special needs kids can be exhausting. Yeah, I know; all parents are tired. Remember I did this with five typically developing kids. I know the difference between being tired and being exhausted. It’s not just the physical rest that we sometimes give up. There is so much stress. A disability often taxes a family emotionally. Typically developing kids grow up. They learn to do things for themselves. They eventually leave home. Think about it. Now, are you really THAT tired? I’m really THAT tired. Really.

7. Many parents of special needs kids hope for the best but prepare for the worst. We know where all the exits are, carry a bag of emergency supplies, and have a plan B in place at all times. There are these things called meltdowns. They may look like temper tantrums to you but they are not comparable at all. Meltdowns are not usually triggered by anger but are from anxiety or sensory issues. Meltdowns are not something a child can really control easily. Meltdowns can ruin a gathering. Hoping for the best and preparing for the worst also applies to the long-term as well. Parents of special needs kids have to have very flexible plans for their children’s future as adults. Many of these special kids will never “grow up.”  

8. Special needs children are expensive. They require therapies, doctors, medications, and schools that typically developing children do not. One of the things we hear a lot is, “You get help with all of that right?” I always want to laugh. Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts. Parents of special needs kids are often deep in debt.

9. Parents of special needs kids hurt when their kids hurt. Sometimes our kids have to do really hard things, academically, physically, or mentally. And we just have to watch, hands tied, while they struggle. Sometimes our kids’ pain, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes when I watch Tate pace, wringing his hands, or even breaking out in hives, because he is fearful of what lies ahead, I become physically ill myself. 

10. Parents of special needs kids need encouragement, not pity. We are proud of our kids. We celebrate smaller milestones than you will for your kids but they are just as precious to us. We love our special kids just as much as you love your kids. We do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us, probably more than you will ever know. 

11. (Similar to #10) Parents of special needs kids hear a lot of clichés. “Everything happens for a reason” and “God only gives special kids to special people” are two that I hear the most. Neither of these things is even true! Think about it. If everything happens for a reason then children are abused for reasons. Cancer has a purpose. The second cliché is no better. Lots of special needs kids are born into families that hurt them instead of help them. I hate clichés. I’d rather hear, “I prayed for you today” or “Your kids are sure making great progress.”

12. Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.

13. Sometimes parents with special needs kids are defensive. There are reasons for it. Some of us have had a few really bad past experiences with our kids’ peers, other parents, and teachers. We have learned from past incidents that not all children or adults are kind to us. We are hoping it won’t happen again but know we need to be prepared. Also, we know people are watching us, and our kids. We are different and we know it.

14. Despite #13, Parents of special needs kids are approachable. We WANT to spread awareness about our child’s disability. Ask us your questions. We will answer them. We would much rather explain the how and why than have you guessing and misunderstanding. Don’t stare but come over and ask us what you want to know. Remember #4, we love to talk about our kids just like you do and we don’t bite. Our kids don’t either (usually.)

Riding the train at the zoo

15. Parenting a special needs kid is rewarding, more so than anything I’ve ever done. The small things are often huge in our worlds. The things we learn from our kids and their struggles could never be taught using any other method. I had heard it before I had my own special kids: “He has taught me more than I could have possibly taught him.” I used to wonder what that could really mean, imagined that I might know; but I did not. I’m not sure anyone could understand without walking in the shoes we walk in. It’s life lessons we learn. It’s compassion, patience, joy, and empathy on a level that no one could have ever described to me before I became a parent to a special needs child. 

Note: This blog post has done so well I decided to try another similar to it. Click to read "An IEP Tutorial: 13 Tips." 

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Why I Wore Blue Today

What did the color blue ever do for me? Actually, my family would laugh at this because blue is my favorite color. I wear mostly blue and decorate almost exclusively in blue. Once, my older sister had an intervention of sorts for me.  I asked her opinion on the counter top I was looking at when remodeling my kitchen. I was leaning toward blue. She looked around and said, “No more blue! Your carpet is blue. Your walls are blue. Choose a different color for your counter top.” Ha! I chose a light green with a splash of blue in it.

Why do mothers of children with autism ask their friends and family to wear blue one day a year? It has nothing to do with the color itself. What can the color blue do for us? The answer is fairly simple for me. The color blue cannot perform some kind of therapy for our children. It cannot help with their social skills, their communication skills, or their motor skills. It cannot calm them, lessen their quirkiness, or ease their anxieties. By wearing the color blue on World Autism Awareness Day, you let me know you care. You let me know you are “aware” of our walk. My family does not want your pity or your condolences. We would like your empathy though. We would like to know that you know that we are struggling and that you understand just a little bit. THAT is what the color blue did for me today. When I knew that Tate’s school had made an announcement yesterday to let the students know that today was Autism Awareness Day and people were wearing blue in support of awareness, it let me know that the administrators care.

          Tate with his two amazing teachers

On a much bigger scale, the campaign to wear blue for autism awareness is exactly what it sounds like. It is about educating the public. People today know so much more about what autism is than just a few years ago. It is partially because of campaigns like this. The Centers for Disease Control announced last week that the numbers are now 1:68. You would have to live virtually in isolation to avoid knowing people with autism in this day and age. The education and consciousness takes away the fear of the unknown. It diminishes the bullying of people with autism. Our education about autism causes people with autism to become so much more approachable. Awareness makes it easier for them to attend school, easier for them to find employment, easier for them to fit-in in their communities, and easier for their peers to befriend them. Even the word itself, “autism,” is becoming a word used in everyday conversations. Raising awareness if very important to us in the autism community. Awareness of what autism is will keep our children safer and cause their futures to be so much brighter.

Educating the public also means that children with autism may receive a diagnosis earlier and receive the early intervention they need. I am confident that every dollar spent on early intervention saves many dollars in the long run. So many of the children who receive intensive early intervention become successful in ways they could not have otherwise. They may need a lot less support as adults. The younger the intervention, the better the results. The brain is much more malleable when it is young. Education and awareness are so important. So next year, on April 2, “light it up blue” for autism awareness.