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 Blog

I blog about my special kids. I blog about autism and FAS because I want to educate others. Educating others will make all the difference in how my kids and others are treated in this world. I blog for Tate and Sydney.

I blog to share my experiences with others. I blog because parents need to know that drinking alcohol while pregnant will do irreversible damage to their unborn baby. I blog because adoptive mothers need to know just how hard parenting a child with no impulse control is going to be. I blog because autism is now being diagnosed at a rate of 1 in 66 and many of my readers will be touched by someone with autism, if they are not already. Sometimes my blog posts are encouraging to others but sometimes they are not. I blog for others.

I blog because it is good therapy for me. I have blogged about the disappointments we have encountered, the challenges we have faced, the people who have helped us, and the few who have hurt us. I have blogged about victories and failures, the hard work and the rewards. Sometimes when I blog I am sad, but usually when I blog I am not. I blog for me.

Although much of my audience has never met me, they are getting an intimate look into my life. I wish I knew them better. I would love some feedback, some comments after the posts. With almost 100 posts up now I should be getting a feel for what gets read and shared and what does not, but I am still surprised sometimes which blogs get hundreds of views and which ones only get dozens. I know my kids, siblings, and even cousins are reading. As long as my large family is reading I can always count on at least two-dozen views. HA. I know some of my readers are teachers. A few tell me they are reading and learning. Two of my teacher friends have told me they have learned more from my blog than they have from any other source. That makes me happy on one hand, but sad on another. Of all the people in this world that need to be very well educated about autism, it is our kids’ teachers. They should get a lot better education about their “special” charges and their needs than one mom’s view. It is one in 66 now, folks! Everyone needs to know what autism is in this day and age.

Some of my most-read posts are the ones I write about personal tragedies, not the ones about autism or FAS. The post about my miscarriage, one about the things I regret, and the one I wrote recently when I was filled with angst over my inability to influence someone I love were some of my most popular posts.* Why is that? Why do we all love a train wreck? Why do we all want to read of someone else’s sorrow or regret? Maybe it is so we can exercise those empathy skills that we would not have if we had been born with autism! And, it may be that when we read of others’ trials we can count our own blessings.

If my purpose in writing each post is not to educate or edify, does that mean I should not have written it? Must a Christian ONLY write or speak of things that will encourage others? Must we leave out the heart-rending stories that do not have happy endings? Must we never talk of our past disappointments or our anger? Have I hurt my influence with my writings? I think I know the answers but recently these questions were planted in my mind by a reader.

I realize when I “bare my soul” and share my thoughts in a public way I am opening myself up to criticism. I realize that I have a huge responsibility as a Christian not to hurt my influence. I also realize that I need a thicker shell if I am going to continue to blog. It is a good thing that I have a whole lot more encouragers than I do critics. I have read (and I believe it is true) that for every put-down we hear, we need ten compliments to undo the hurt from the one criticism. “Be careful little mouths what you say” as I used to sing to my children.

One of my favorite gospel preachers once said we can judge people’s actions but we had better not judge their motives. We cannot see a man’s heart or know his motives. Only God can. Sometimes people judge me by the words I write. I cannot fault them. I wrote the words and invited those people to read them. But, when people try to see behind the words and imagine that my words are not sincere or that my heart is bitter, can it be that my heart is not the one that needs examined? For the record: I do believe that we can judge others. A favorite quote of non-Christians is that we should not judge others based on John 7:24 but they never want to finish the verse which says we must judge others with RIGHT judgment. You will find the same idea in Matthew 7:1-5 and it finishes with the idea that pulling splinters out of an eye is hard to do if your own eye contains them. I’ll step off the soapbox here.

I will continue to blog: for Tate and Sydney, for others, and for me. From time-to-time I may have someone question my motives or even my sanity. My motives are pure and my sanity…. Well, I have as much as I ever did. 

*links to posts mentioned: Loving Chaney, Regrets, Sometimes There Is Nothing I Can Do

Next up: Why I don’t usually get excited about those autism feel-good stories I see in the news.

A Look Inside a Black and White Mind

If you know me very well you have probably heard me say that I believe I could almost get an Asperger diagnosis (or DSM Level 4 as it is now called). I have a lot of the characteristics. I was painfully shy as a small child and have never been a people person, although I have taught myself how to behave in most social situations, I still find it very difficult to interact sometimes. I am a visual thinker, thinking in pictures and categories. Ironically, being a visual thinker does not help me in the area of facial recognition. I do not recognize people’s faces until I have seen them several times. I am also a black and white thinker. By that I mean I have a lot of trouble with gray areas. In other words things are right or wrong and there is no in-between.

Many of the people in my life, even those who know me best, say I hide my insecurities in social situations very well. The story of how I learned to “fake it” goes back to my teen years. I had very few friends in grade school. I was in a large school district and very few of the same kids were grouped together year after year thus making it hard for a shy kid to form relationships. I had one friend in second and third grade that I was close to but the school boundaries changed after that and we were sent to different schools.

In the fourth grade I became friends with a girl who I truly loved. A lot of my childhood memories revolve around her. She moved away when I was in seventh grade and I spent the next year in a depressed state. There were two girls that year that got their kicks by bullying me and I had no idea how to defend myself. Then, at age 14, a couple things happened that changed my life. We moved. We moved from a VERY large school district to a VERY small school district. AND, my brother who was five years older than I, and the coolest, funniest guy who was always “the life of the party” told me something that forever changed my life. I told him how afraid I was to start at my new school. I told him how hard it was for me to meet new people. My cool brother, who had dozens and dozens of friends, told me that he was just as introverted as I was. He told me that I had to go into that school and ACT the way I wanted people to perceive me to be. I had to think of it as a play and I was an actor. I remember him saying that I had been a little fish in a big pond at my old school and I would have the chance to be a big fish in a little pond at my new school. I could totally change who I was by how I acted. I had the chance to redefine myself. I looked up to my brother like no one else I knew and I trusted him. I did what he told me to do. Within days at the new school I had made more friends than I’d had in years at the old one. Of course it helped tremendously that everyone at the new school was so welcoming and friendly. Those four years of school were amazing and because of those four years I went off to college well-practiced at making friends and maintaining friendships. I had mastered the art of social relationships, much later than my peers, but I had done it.

I am a visual thinker and categorize everything I learn or see. I had no idea that I think differently than the general population until I read Temple Grandin’s book “Thinking in Pictures.” I read her book when Tate was diagnosed with autism and I learned so much about myself. I knew and had always known I was “different” than a lot of people but had no idea why. I think differently. I did not know that everyone else did not think in pictures. I would still not know this had Tate not been born with autism and had I not needed to educate myself about it. Knowing that I think differently has helped me to understand so many things I had always considered a mystery.

Temple Grandin likened the way she thinks to a video player with clips of video she can pull from files. I would describe the way I think this way: I place the pictures I have and the “rules” I’ve learned in a sort of list and categorize them in a filing system, like a rolodex. I can think quickly through my files and find a picture or a rule that applies in most situations. When I was young my list of rules was shorter and I didn’t have a lot of “files” to draw from so I didn’t know how to act in a lot of situations. Consequently, I appeared socially awkward in new places and around new people. Now that I am older and I’ve had a lot more experiences, my list of rules and how to act in almost any situation that occurs is quite extensive. Everyone learns from their past experiences I know but apparently I am different in that I visualize my list or quickly run through my list of rules so that I can decide what responses will be socially appropriate. It doesn’t just come naturally for me. As a young adult I sometimes misjudged and came up with an inappropriate reaction occasionally. I rarely do that anymore because I have memorized and know how to use most social cues and respond appropriately. Thus, I appear very “normal” to the world. Don’t get me wrong, I feel very “normal” all of the time. This way of thinking and my rolodex works for me. It may be different than the way you think but it works for me. I get by just fine and up until a few years ago I had no idea that my way of thinking was not universal with human beings. HA

It makes no sense to me that a person who thinks in pictures like I do has such a hard time with facial recognition. I am what some call face blind. I recently read almost two percent of people have this issue. I have to meet someone more than once, and usually several times, before I can memorize a face. Then, when I see them in a different setting than I met them in, I am unable to identify how I know them. I often recognize people by their voices though so sometimes if they speak to me that can save me. Sometimes I can tell who a person is by the way they walk. If I see them walking toward me or away from me I might be able to identify them but if I walk up on them then I struggle for to place them. This inability to recognize faces is a real handicap for me and I appear to be a snob often as I walk right past people that I should be stopping to speak to. I honestly do not understand how everyone else DOES seem to recognize a face after one encounter. Unlike people with autism, I do not have any trouble with eye contact so that is not the issue. I think it is that people basically all look similar to me. Oh, there are differences, like hair length, body shape and size, and color too. So that all helps but I see maybe one of a dozen different faces when I meet someone. Weird, I know. If there is something very unusual about a person then I will recognize them after one meeting but otherwise, it is not going to happen. Most of the time when I meet someone I think, “She looks so much like ______.” However, when I mention to someone else that I think the two look similar they usually will not agree. I volunteer one day a week with a teacher friend in our local school and it takes me all year to match the kids' faces to their names. Some I never learn. That is just not "normal." Movies, especially old ones, are a real big part of our family life but I can rarely tell the actors and actresses apart. I take a lot of teasing over that.

I always dread hearing the words “gray area” because I know there is going to be a conflict my mind will have to wrestle with. There are almost no gray areas for me. Gray areas do not fit in file folders. There is no place on the rolodex for gray areas. You see, when you are a concrete thinker like myself, issues are black and white, right or wrong. I recently heard a doctor refer to concrete thinking as “rigidity of thinking.” I thought that was a pretty good way to describe the way I think. There isn’t much flexibility. There is a right way to do things and anything other than that one way, is wrong. And THAT folks, is the reason I can sometimes come off as self-righteous, calloused, or uncaring. My patient husband has taught me to rewrite many of the rules on my mental rolodex. I now can accept that there is more than one way to do some jobs and still get satisfactory results. He has taught me that people who do not do things exactly the way I do are not always “bad guys.” My rolodex continues to expand. So, why don’t I just accept all gray and expand every day? It is not that easy when you are a concrete thinker. Each bit of gray has to make sense. It has to be tried in the courtroom of my mind. If it doesn’t make sense and cannot hold up then it will NOT be added to the rolodex. Many, possibly even most, of the gray things I am asked to consider do not even get a trial date. HA. I am being a bit facetious but this  is sort of how it works for me.

I do not have autism. I have a great imagination, a sense of humor, super eye contact, and no problems with communication, empathy or theory of mind. I do not have any stereotypic behaviors or a lot of sensory issues. I do not perseverate (obsess) on things (although around election time, some might argue about that one.) HA Oftentimes, relatives of a person with autism have some of the characteristics of autism. That would be me.

I am 51 years old and still adding to some of the “rules” I probably should have known for a long time. Moral issues, biblical principals, and God’s commands are extremely easy for me to believe and obey because God’s word is very cut and dried on most issues. It is the social rules and relationships that have always been harder for me. If I wrong someone then it is very hard for me to forgive myself. I spoke in anger to a friend several months ago, apologized, and was forgiven yet I am still ashamed of myself over it. If someone wrongs me or betrays a trust then I will probably never be able to confide in them again. My respect for them is gone. I can forgive them. I can love them. I can be nice to them, but I will not ever trust them again. 

I illustrate my thoughts and feelings with pictures all the time. It is how I think. Following is an example of how I pictured it recently when someone I love did something that hurt me, and others. My mind saw a clean, steel kitchen sink, full of clear water. There was a drain in the bottom of the sink and a stopper in the drain. When my friend did the horrible thing he did, the stopper popped out of the drain and all the water quickly ran out. The water was my respect (not my love, just my respect). It is gone. The sink is dry. I have tried to refill the sink but the stopper just will not hold. Can I try and visualize another stopper and fixing the sink? Oh, I can try; and try; and try again; but there is only so much a concrete thinker can do. Can I change? I've been trying for at least forty years and praying about it daily. If anyone can soften concrete God can so I will keep praying and trying. 

You might wonder why would I want to write a blog post like this? People will think I am “weird” now. I have a couple of reasons. The first being the usual: to raise awareness and tolerance for people with autism. Sharing some of the same characteristics with Tate, perhaps does give me some insight into how he thinks and feels. Secondly, I have tried to describe some of these things to my family and close friends before and wanted to get some organized thoughts on paper. Hopefully, this will explain a few things.

If you liked this post then these two would be recommended for your reading pleasure: Why does Tate act that way? and Look into my eyes.

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It's Not Such A Bad Life

The day I realized Tate had autism, and for a plethora of days after, I was dazed and distraught. Tate got an official diagnosis well before the age of three. We had decided to use the researched based therapy called Applied Behavior Analysis (ABA) before we even had the diagnosis and we had already begun our in-home therapy with a certified behavior analysis. The books I read said we had a window of time, a fairly small window of time, in which to help Tate. I was frantic. I could not get therapies in place fast enough. I wanted everything done RIGHT NOW! I needed to focus. I forced myself to calm down, get organized, and get busy. I was up most nights reading about how to teach Tate and then trying to implement the best strategies all day long. Every waking minute needed to be an educational one for Tate. There should be no down time because he used down time to stim. I was exhausted. I saw time slipping away and I felt like I was moving in slow motion. I was literally in panic mode. Why would nobody DO SOMETHING?! Couldn’t everyone understand how urgent it was that they help me save my baby and his future? We not only had to teach him to do things he had never learned to do on his own, we had to reteach him how to do the things he had stopped doing and we were in a race against time. I kept reading how elastic and malleable a child’s brain is until about the age of seven or eight. After that, we would the progress would stall, according to the books I read.* So, I pushed and pulled, kicked and screamed, made phone call after phone call, and appointment after appointment, trying to put all of the people and plans in place that could help us to help Tate gain and regain what he did not have. He had lost so much language and so much of his personality. He was afraid of ridiculous things, including other children. He could not pretend or play with toys appropriately. He could not communicate effectively. He spent a lot of time lost in stereotypic self-stimulatory behavior.

Before the very first therapist showed up to see Tate in our home, I had successfully eliminated some of the stereotypic behaviors like the hand flapping. But, as fast as one behavior was extinguished, another would replace it. I targeted behaviors one at a time. Sometimes the replacement behavior was worse than the one I had eliminated, although none were ever as awful looking to me as the hand flapping. I had to be creative. Tate loved to look at his reflection. He would stand in front of the blank television screen or the oven and turn his head, watching his reflection with peripheral vision. I put a fitted sheet over the front of the television and hung a big towel over the oven door to keep him from spending long periods of time engaged in this. Tate liked to run without purpose. That means he would run back and forth through a room, but only for the repetitiveness of it, not because he was pretending or playing purposefully. I blocked his paths. Tate loved thick books so he could fan the pages over and over. I put all the books except his picture books up higher than he could reach. Tate liked to push the buttons of toys, to hear the same song or noise repeatedly. I took the batteries out of those toys.

Tate at Preschool, age 3

Those first months of working so hard are sort of a blur. Even after we enrolled Tate in the early childhood autism program through the University of Kansas (KU), I was still exhausted. I’d never worked harder at anything in my life than I did trying to bring Tate back from the autism that stole him from me. When Tate aged out of the programs KU had to offer and entered public school I found I would have to wear yet another hat (boxing gloves might be a better illustration.) I had to learn how to fight and argue and scrap with the public school district. Not everyone who was to be involved with Tate’s Individualized Educational Program (IEP) was educated about autism, cooperative, and friendly. We fought for four long years, with very little progress made compared to the years before those and the years since. 

We saw a tremendous amount of growth academically the year Tate was in fourth grade and he has done well every year since. Tate recently began seventh grade. Things are going so well now that I can sometimes almost forget about those awful four years of primary school. I can also go days at a time now without remembering the day that I learned what autism is. Back then, when I was working so hard with a preschooler that could barely talk, and again later, when I had to fight the public school for services, no one would have been able to convince me that someday I would say, “It’s not such a bad life.” But, now I can easily say it. I can say it now BECAUSE of all the early intervention we did back then. I can say it BECAUSE of all the fights I won to get Tate the services he needed. Today we reap all the benefits of the things we did back then. Tate is only 12 and the work is not over but it is so much easier now.

It’s not such a bad life. I’m not sure I will always be able to say it. Perhaps we will have bad things happen again in our future. But for now I can say it. I really can say, “It’s not such a bad life.” Wait for it.... I can even go as far as saying, "It is a really good life!" Autism is what Tate has but autism does not keep us from loving or laughing. It does not keep us from going and doing. We are blessed. We have a good life, autism and all. A similar post: What did I do to deserve this?

*I do not believe now that we ever saw a huge change in the rate at which Tate learned after age seven or eight like I kept reading. Tate continues to make gains. 

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