Wednesday, July 4, 2012

Stage Fright

The Parent’s of Autism group recently welcomed guest speaker Jennifer Moyano, from the Oklahoma Autism Network (OAN), at our monthly meeting. Moyano was a great help by providing resources, information, tips, and literature to our group on all sorts of subjects including state and federal financial assistance for families affected by autism. I’ll probably hit on several of the things Jennifer spoke about in the next couple weeks. This week I want to share something she talked about known as the Feeling States of Grieving.

These are steps that all parents go through when they find out their child’s diagnosis. These are analyzed by Dr. Ken Moses, a nationally recognized psychologist and father of a special needs child. Some of these I have talked about in the past, but some I didn’t realize until she brought them up. I feel like I should share these since they do seem to be common.

According to “Dr. Moses is a psychologist who has devoted himself to helping people deal with crisis, trauma and loss. He is a nationally renowned speaker, author, and clinician who has focused much of his work on parents of impaired children and disabled adults. He has faced deaths, life threatening illness, disabilities, and other major traumas in his own family and life. He continues to help people sort out their lives after experiencing loss and struggles with the same issues himself. Currently, he maintains a private practice limited to the issues of grieving, and directs Resource Networks, inc. an organization specializing in the production of workshops, seminars, consultation and materials that deal with issues of human growth in the shadow of loss.”

Denial is the first state that he talks about. This is one that most of us are familiar with. This is because we all tend to go through this. Moyano said that the father tends to go through this more than the mother. I would have to agree with that. I rack this one up to mother’s intuition. It seems that the mother has an idea to begin with that there is something wrong. The father though usually has such an idea about what his child is supposed to be like thanks to world views that he doesn’t even trust the trained professionals.

According to a handout produced by the OAN, this: “Serves the purpose of allowing you to ‘buy time’ while you muster resources.” This is a great way to look at it. When you find out you don’t want to be left in the dark. You don’t want your child to have something that you know nothing about. So while you begin to gather information it is just easier to say it’s not true.

This is not just the father though. Mothers too go into denial stage, and many grandparents refuse to see the issue as well.

Anxiety is the next state. This: “Provides the mobilizing energy needed to make changes.” The example given was that this is the stage where we stay up late do all the research that we can handle. We’re online looking up information, reading books, and finding resources. I think we’ve all been there.

Fear is the next state. This: “Provides the balance of reality.” We as parents fear many things. What can I do to help my child? What if I do the wrong things? What’s going to happen to my child if something happens to me? Etc.

Guilt is the next state. This: “Explains the unexplainable.” This seems to be more of mom thing, although dads do it too. This is when you ask what happened. Did I do something during pregnancy that caused this? If I had not had that flu shot would it be different? Did I drink something I wasn’t supposed to? Did I eat too much fish? Etc.

Depression is the next state. This: “Helps to redefine what it means to be capable and competent.” This seems a little different than what you might think. This is where you decide that things are okay as long as your child is okay. Moyano’s example was, if your child will only eat Fruit Loops it’s okay as long as your child is eating. This is something we’ve struggled with in Konner’s case several times. He would only eat Lunchables for lunch. We feel like this is okay as long as he’s eating. He has expanded his taste buds in recent years, but is still a picky eater.

The final state is Anger. This: “Clears the way to getting on with the task at hand.” At this point you’ve gone through the other stages and you are “revved up and ready to go.” You may be angry that this has happened, or at the people who did not believe you, the things you have to face, but you are ready to face them.

OAN suggests that you share information with your family and friends. This will help them understand what it’s going to take to help your child. You should also recognize that others (spouses, siblings, grandparents) are also grieving, but may be at a different stage than you. You have to keep that in mind, and be prepared to help them when they move to the next state. Seek out support from others. This is where the Parents of Autism group helps.

I think most, if not all parents, have felt these states when dealing with their autistic child. I think it’s nice sometimes to know that you are not alone in how you deal with your feelings though.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

Tell Me Something Good

I recently sat down with a friend who found out his child was autistic. This was a very close friend, and I felt like I should give some advice. I’m not sure if they wanted my advice, but I thought back to when Konner was first diagnosed and how overwhelmed I felt. I would have liked to have had someone sit down with me and tell me few things.

This made me think of my next column. Some of the advice I’m going to give may be a repeat of some things I’ve said in the past, but I think it’s important, especially for those who are just now finding out about their child. These are some things that have helped me along the way.

I would first like to say not to freak out. This is not a death sentence. It’s actually a good thing. Now you know the problem you can start finding ways to treat it. So many parents, myself included, seem to be upset at first. This is natural. The next emotion should be relief. You’re going to have many more in the future including frustration, anger, fear, and eventually joy.

It’s not going to be easy. Nobody said would be. In fact at times it’s going to be down-right hell. You need to prepare for this and never give up. You are your child’s only hope in making it in this world.

Find a support group. This is one of the best outlets for you frustrations. It’s crazy, but we want to know that we are not the only people in the world having problems. We want others to be doing as bad as or worse than we are. There are groups out there to help you vent and cope with the strain of parenting a child on the spectrum. They are also some of the best ways to find out about resources. Many of these parents have been through this before and can give you advice on where to look for answers.

Get help. It’s okay to ask for help. As I previously said, there are people out there that have been through this before. They know where to look. It’s great to ask because it will save you time and effort. It’s not a sign of weakness. In fact, it shows strength to ask someone for advice.

There is no such thing as a stupid question. I know we’ve all heard this one all our lives, and many can argue this. However, I had a great editor one time that told me, “If you have a question about something chances are someone else will to, so ask it.” That’s some of the best advice I’ve ever received.

You have to do your research. This is the best way to find ways to help your child. We have internet. Google is one of the greatest assets we can use. Be careful when looking for information on the internet. Make sure that it’s a legit site. Use your gut instinct. If it sounds crazy it probably is. However, there are some great resources out there if you just look. Books are also a great source. There are so many books out there that you can feel overwhelmed by the selection. Just find one that suits your need and dive in. This doesn’t even touch the surface of iPhone and iPad apps, podcasts, magazines, medical journals, etc. Just don’t overdo it.

The most important thing is to get therapy for your child. The sooner you do this the sooner you will see results. There is occupational therapy, sensory therapy, speech therapy, some have physical therapy, and the list goes on and on. This can be overwhelming too if you let it. Just remember that you giving your child the tools to prepare them for a better life.

Don’t let anyone tell you that you are not a good parent, either consciously or subconsciously. What does this mean? Well, we have so much pressure and frustration that sometimes we let others make us feel like we’re not being good parents. It’s tough raising any child, but one on the spectrum is multiplied ten-fold. If we hear another person, or parent, talking about something we did with our child it’s easy to take offense. Just remember that they don’t know what you’re situation is. They don’t understand everything involved in your life. And, if they are parents themselves, they have made mistakes themselves. They’re not perfect. If they’re not parents then they don’t get a say anyway (at least that’s my opinion).

These are just a few things to help put life into perspective for parents who are new to autism.  

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

Moutain High, Valley Low

I was at church last night when something hit me during a prayer that made me really think. The gentleman who was praying said something that I have heard several times, but for some reason it really made me think last night. He said something along the lines of, “Thank you God for the highs - and the lows.” Now, again I understand this and have pondered on its meaning before, but I really started thinking about the way this works with autism as well.

The meaning of course is that in order for us to enjoy the highs in life we must have felt the lows. We must have something to compare and contrast with our joyous occasions. We have to have something to learn from. If life was just great all the time we wouldn’t know it. Think about that. We would lead dull lives.

Let me give you an example. As you have been reading in the past two weeks, our family took a vacation. It was a great time. We had fun at the beach, saw lighthouses in North Carolina, visited the National Mall and several of the Smithsonian museums in Washington D.C., and enjoyed camping in Virginia.

I think what made this more pleasant was the fact that Konner was so good on the trip. In the past we’ve had some bad experiences on vacation trips. We’ve had screaming, meltdowns, and disruptions. These things really make a trip unbearable at times.

As we were in the van headed home on Thursday afternoon, and we had been in there for about seven or eight hours, I looked in the rearview mirror and saw Konner just looking out the window and enjoying the scenery. He didn’t have his iPad at the time; no iPhones, DVD players, or anything. He was just content with looking at the beauty around him. This almost brought a tear to my eye. I just thought back to how far we’ve come in just a short period of time and realize that he’s doing awesome.

On this trip we had one minor meltdown. It was in the morning, and he was upset over losing a piece of his train track. The situation was cleared up shortly and all was well.

Listen, if this is the only issue we had on the trip with him I’m good.

When we first got his diagnosis my heart sank. I know most parents feel this way. It’s natural. You learn about all the things your child is “not supposed to be able to do.” Well, it’s these lows in life, the can’ts and won’ts that make the cans and dids all worth it. Just keep that in mind for all the families of newly diagnosed children.

If it hadn’t been for the bad experiences in the past though this probably wouldn’t have been such a wonderful trip. I know this sounds crazy, but it really is true.

On a side note: Parents of Autism will meet Thursday night at Carl Albert State College in Poteau. Jennifer Moyano, training and outreach coordinator from the Oklahoma Autism Network, will be there discuss federal and state programs to assist families with special needs children. Jennifer, OTR/L, is an occupational therapist for the Oklahoma Autism Network at the University of Oklahoma Health Sciences Center. Jennifer has worked with families and their children with developmental delays and disabilities, including autism since 1998 through early intervention, school-based services, and in clinical settings. Jennifer has specialized expertise in autism spectrum disorders including early identification, screening and positive behavior supports. She has provided training and technical assistance for providers who support children with autism and their families in early intervention, educational, and community settings. Jennifer has completed training and reliability in the use of the Screening Tool for Autism in Two-Year Olds (STAT) at Vanderbilt University and the Checklist for Autism in Toddlers (Denver Modification) (CHAT) at the University of Oklahoma Health Sciences Center.

The meeting will be held at 6 p.m. If you have any questions about this please contact me at Everyone is welcome to attend. I encourage everyone including parents, teachers, therapist, family members, etc. to join us.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

They Call Me The Wanderer

As I write this column, sitting at a beach house staring at the ocean (yes I’m bragging a little), I decided to continue on my crazy parenting techniques from last week. We as parents seem to take things to extreme just to help our children, but one thing I’ve noticed that may or may not be a good thing is that many pervasive parents are overprotective.

I first noticed this sometime ago. It’s natural to feel this way. After all, our children are different. They think differently, act differently, and play differently. We may sugar coat it sometimes, but they are not your normal children. Some may get upset with that statement, but deep down it’s true. This is why we tend to hover over them, or at least Jen and I do.

I’ve noticed this several times, but I really began to pay attention a couple weeks ago after a trip to the park. I had taken Konner to his occupational therapy and Jen walked over to the park with Kruz. When we were done we went to pick them up and she began to talk about how the other parents were not like her. She explained that she made sure Kruz was within catching distance at all times while the other parents just sat on benches and let their kids go anywhere they wanted.

This is when I really realized that we may be a little overprotective. However, I blame this on Konner. Well, not him exactly, but the fact that we have to watch him closer than most.

Again, maybe this is just us. Maybe we’re just hovering parents by nature, but we’ve never wanted to let Konner too far away for several different reasons. This has spilled over to Kruz. These are things that I’ve talked about in past columns, but I think they are worth revisiting.

Parenting a child who is on the spectrum is scary at times. An example of this is from yesterday (Saturday). When we reached the beach after a day-long drive, we took a few minutes to relax, but the ocean was calling. So, we got the kids ready and headed over. Now as I’ve said before Konner is fearless, as are most children with autism. He wasn’t afraid of the large waves crashing into the sand dunes where we were. He saw the water and just darted straight into it. These were large enough and powerful enough to knock me over. He wouldn’t have stopped, but Jen caught up and grabbed him as he was about to be pummeled. They did knock him over a couple times and we were afraid that the outgoing tide would take him out farther. I just began to put myself between him and the rest of the ocean.

In contrast, Kruz was excited to run right out into it too, but when he get knocked over a couple times you could tell he was a little scared and backed off some.

Kids on the spectrum are fearless. They don’t fully understand danger. They will do things without thinking about, or fully understanding, consequences. I’ve read and heard horror stories about children who wandered off and the end result was bad.

I think of a child I know on the spectrum who loves water. She is a more classic autistic child and when she wanders she heads toward pools, ponds, etc. This is scary, but I know that her parents are very protective and so are the people around her. I only use this as an example of why it is a great idea to be more protective.

This is also why our front door looks like Fort Knox. I’m not trying to lock people out as much as I’m trying to keep Konner in.

When I’m setting around with family or friends, every once in a while I tend to shout, “Where’s Konner!” in a panicked voice. They usually laugh and say, “He’s fine, let him play.” I can’t just let him play. I have to know where he is at all times. If he gets quiet then I start to get frightened.

We tend to judge parents when these things happen. We ask, “What were they doing?” I don’t blame or judge those parents. I don’t know the story. I do know that I try my best to keep an eye on my child, and at times that is tough. These kids are curious by nature and like to take investigative strolls. This is when they disappear quietly and you go into freak out mode.

I also know that it is exhausting caring for any child, but especially a child on the spectrum. You get wore out, both physically and mentally. You take a minute break and it could turn out bad, but sometimes it happens.

This is why I don’t apologize for keeping a short leash on my children. I know that because of Konner, Kruz also is overprotected. That’s just fine. I’ll deal with the consequences of that later in life.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.