Autism Suggestions – Post #2 – Open Communication

The last post about autism gave you a little backstory and my opinion on the very best source for wisdom and our willingness to search it out.  I want to kind of springboard off that suggestion of keeping the lines of communication open between the heavens and yourself.  Clearly, communication is of vital importance in life whether it be in professional or personal relationships, every day social interactions, or solving world hunger (I would love to see this happen!).  I don’t think a lot of people understand what communication really is though.  I think many people are under the impression that it involves just talking.  No.  That’s really only a part of some communication.

Communicating really means being able to clearly convey what people intend and exchanging ideas/thoughts/feelings.  I don’t know about you, but I hate being talked at.  Just talking to someoneautism6 isn’t communicating.  The intended message needs to be not only received, but we also need to be open to receiving information back.  It can come in many ways, not just the verbal or written word.  As a matter of fact, I have had to learn to understand my son’s non-verbal communication as clearly as I do his words.

But why?  Why is communication so important, especially in regards to autism? Well, how many of you feel like your child’s special needs have added or do add extra strain on your family relationships? I’m talking spouses, children, siblings, parents…any or all of them. Well, it has certainly done so with my relationships!  I already told you how much stress it created just to have my son diagnosed.  It was a waking nightmare. Unfortunately, just having the diagnosis didn’t remove that stress.  Things have only grown more complicated as my family has grown and as everyone’s opinions and ideas have grown and changed. I mean, life itself brings stressors.  When you add something like a child/ren with special needs, it definitely adds more strain. Or does it?  Does it really?

Well, I think it can, but it doesn’t have to.  Bear with me while I explain.

Communicate with Spouses/Partners

I’m sure you all know the statistics for divorce in our country.  For the average American, the divorce rate is 50%. Well, it’s around 50%. But when you add a child with any kind of special needs into the mix be it Down Syndrome, Fetal Alcohol Syndrome, Autism, Multiple Sclerosis, or basically anything, the rates go up significantly…80%-90%. That’s huge. That tells me one very important thing.

It’s hard.  It’s hard to maintain the important relationships.

But you knew that, right? You knew that it is hard to manage a marriage when you have a child with pressing needs. You knew that it is hard to find time to work on the relationships with your other children so that they don’t feel shorted. You knew that it’s difficult to maintain a close relationship with extended family as well. I mean…you don’t need a statistic to tell you that.

But maybe the statistic is a good thing. I think it is. It reminds me frequently of what I don’t want. And I remember what I need to do.

Just like we need to be having free and open communication with God, we need to be having this type of communication with our family. Believe me when I say that I know it is hard. Hard doesn’t even cover it.

When J was diagnosed, I basically did the whole thing on my own. I made the appointments; I went to the appointments; I listened; I observed. When I came home to talk with my Mr. Fantastic about it, he didn’t want to discuss it really. He wasn’t quite ready at that time to talk. But that’s not how I saw it. I saw it as him thrusting everything on my shoulders. But I’m no quitter.  So I maintained. I kept going. When a decision had to be made, Mr. Fantastic would say, “I trust you. You decide.” And even though I was angry, I would make the decision. I continued doing that, and eventually I stopped telling him things. I never told him I was angry. I just assumed he wasn’t interested. I was so wrong. SO TERRIBLY WRONG. What I have neglected to tell you is that during the time of my son’s diagnosis, my husband was in school full-time, working a full-time job, and working another part-time job. He continued doing this for a number of years until he graduated. (Oh happy day! Wait, what? Now he wants a Masters?!  Uh… 😉 ) When he got the job he wanted and his schedule settled, he started asking me questions about my children. I have never in my life been so offended as when he started to question me. Where was all the trust?! He suddenly wanted to know things! He had opinions! What?! TOO LATE!  I was running the show!! Well…after a period of adjustment, I realized a few things. The first thing I realized was it was good that he had opinions. It was! It is a good thing for a father to have a care in how things are going with his children and home! The second thing I realized was the only reason he didn’t “want to talk” before was because he had no time or energy left to devote to it. He was stretched to the max mentally and physically. He couldn’t give anything else. He was doing the only thing he could. He was relying on his partner to make up the difference. After all, he trusted me implicitly and believed me capable. The third thing I realized was I had done wrong by cutting him out.

I hate to even say those words…I had done wrong. They hurt me inside. Yuck. But I had! Was he relying on me? Yes. But he had a right to do so! I had promised him years before that he could do that! It was wrong, however, for me to start withholding from him. It wasn’t only wrong because he was less informed. (Although that is a big deal!) It was wrong because it affected our family. I look at those years and feel sad. I feel like we really missed out on something because my husband and I weren’t communicating. I think that our family could have really thrived during those first years instead of just limped along.  We struggled and fought for every success.  While fighting for successes is still the norm, we could have eliminated the inner turmoil that a lack of communication brought us.

So now we talk. I tell him what is happening. We discuss opinions. My favorite way to do this is on walks…probably because we don’t always agree and there’s the safety of being in public that puts us on our best behavior. HAHA!  But if you are married, do what works!  As long as you find time to discuss the goings on of the family with your spouse, that’s what matters.  You won’t always agree.  (Mr. Fantastic doesn’t always immediately see how right I am 😉 ) But the lines of communication will be open, not blocked.  Misunderstandings will be fewer. Connection will be greater.

Communicate with Children in the Home

Of course, a spouse isn’t the only one that matters. I highly recommend family councils, or whatever you want to call them. We call them Mom and Dad Cookies and Milk Meetings. Do you know what I love about these things? Talking to the kids…individually. Finding time every week to sit with them and visit with them about their education, their social scene, their extracurricular activities, behaviors that need to be worked on and behaviors that have been observed that are just beautiful, and things they want and their goals. You just really get to know your child. But more importantly, they learn how to talk to you and trust you.

Much of the time the siblings of children with special needs struggle in very private ways that they don’t feel free to express. One of the biggest conflicts they have is a silent and often unconscious battle for a parent’s attention and love. Having the family councils, the private individual meeting with the children, however short it is, really “fills their love bucket”, so to speak. This is time with you and them…communicating. How precious is that?!  I don’t think words can describe it, so think about prayer, for a second. Think about how sacred that time is, how sacred it is to spend that time conversing with our Father individually. You cannot put a price on it or adequately describe what it does for your life.  This time with a parent, for our children, means more to their hearts than we sometimes remember.autism8

It also helps us to be more aware of them throughout the remainder of the week until we meet together again. As parents, we all have millions of things running through our minds and endless obligations and responsibilities. These little meetings allow us to keep our typical children from falling through the cracks with their quiet typical (and oh so lovable) ways. Like I said, their needs are just as special as our other children’s needs. We need to find a way to communicate that to them. If weekly meetings aren’t the answer for you, I encourage you to find out what is.  Find something that communicates clearly that your child is loved and that they are special.  And if you really don’t know where to start, well…I already gave you my suggestions for seeking wisdom.  🙂 Go cheat on this test in life!!

Once you start opening the lines of communication between yourself and those within your walls, it just extends outward. You won’t be able to stop yourself from doing it. You won’t! And this is a good thing. It’s good for your children to see you communicate openly with friends and family. It’s good for them to see you be able to lovingly and openly set boundaries with people. It’s good for them…and it’s good for you. When we are able to effectively communicate with those that surround us, we free ourselves and others of the untruths that otherwise would bind or wound them and us.

Go back to my husband and I and our failure with communication. How much hurt there was! I don’t know that he was hurt with any thoughts, but I know that there were things I said and did during those years that hurt him as a direct result of my belief in his indifference. But it was an untruth. Communication between the two of us could have solved that. Nowadays when I begin to suspect that man isn’t listening, I am resolved to find him out immediately. Maybe he is listening; maybe he isn’t. If he isn’t and I am hurt, it’s communicated. Trust me on that.  HA! If he is, I assure you that he lets me know. HAHA! But the untruths have been eliminated. We don’t have time for them. We don’t have energy to waste on those things in our lives.

Granted, there are people that will misunderstand you no matter what. But hey, all you can do is your best. Right?  It might not be the best advice, but I have adopted Tony Horton’s motto of “Do your best, and forget the rest.” 🙂

Communicate with Typical Children about Their Sibling

Of course, we can’t just forget everyone who misunderstands.  Sometimes the typical children misunderstand. Sometimes they misinterpret a different dynamic between you and the child with special needs. This can cause some serious disharmony in the home! What to do? COMMUNICATE, OF COURSE!! 🙂

I highly recommend that you determine when each typical child is old enough to have “the talk”. No. I’m not talking about the sex talk. 🙂 I’m talking about taking your child somewhere one-on-one, and telling them all about their sibling.

I think a lot of times we think they know. They must know, right? I mean, they’ve been growing up around this. They have been living this life with this person in their family. They must know. Right? But the truth is, there is a difference between having something be a part of your reality with information given to you in spurts as you ask questions (and usually prettied up and glossed over), and having a special time devoted to explaining everything. There just is a difference.

parentingWhen my oldest daughter, who is 18 months younger than J, turned 9, we knew she was ready. The jealousy was starting, and her questions were getting more involved. So I took her out to dinner. This was something special in her eyes because we generally save dinners out for the whole family or just Mom and Dad. Then we talked. I told her about J’s diagnosis. I told her about the things that made his brain different than other people’s brains. I told her why he would behave certain ways and not other ways. She asked questions, I answered them. She asked the all important question, “Why does he get more chances than I get?” In her eyes, all the chances he received to do something properly were a great injustice. So I answered her. I told her it was because he didn’t have the same skills she did because of his autism. And then we talked about whether or not this made her brother less in any way, shape, or form. There was no judgment between us. It was free communication. In her typical style, she passionately defended him. This girl, who frequently claims that her brother is the bane of her existence, passionately defended his gifts and talents and all the wonderful things that he brings to the world. When she was done, she was done. She didn’t want to discuss it anymore. She understood, and that was enough. We ate our fabulously healthy dinner of fried zucchini, hamburgers, and French fries and went home. Ever since then, she will occasionally ask me if a certain thing that is happening is because of his autism or not. And she gets it! She doesn’t feel the injustice like she did before, but more importantly, there is a deeper understanding of her brother inside her.

Another unforeseen side effect has been her help. You wouldn’t believe it, but sometimes I can’t teach my son. HAHA! Seriously though. There are moments when I feel like it would be more productive to run headlong into a cement wall. Repeatedly. Then my daughter just saunters up to the table and starts whispering things to him, and Voilà! Comprehension. It’s humiliating sometimes, but at that point, I’d take anything. HAHA! But she never did this before. Our typical children have many gifts and talents of their own. We can’t forget that. They were sent here to be a part of this family with this child with autism for a reason too! If we communicate with them instead of just assuming they know things, we give them the opportunity to fulfill their callings within the home and family. The beautiful part about that is that it almost ALWAYS takes something off of our shoulders, and replaces it with a joyful moment.

Communicate with Autistic Child about Autism

I also want to say a word about communicating openly with the child who has autism as much as possible. I recognize that there can be limitations sometimes to what they might comprehend. But when we think about the relationship we are trying to nurture with our Father in Heaven, it’s an open communication. When we are ready, he gives us more. He not only gives us more trials, He also gives us more information. Little by little. If we are open in communicating with the child with special needs it helps tremendously. It not only gives them a reliable and trustworthy source of love, comfort, and wisdom on which they can count, it gives them confidence.

It isn’t easy to handle these conversations sometimes. When we decided the time was right to tell J about his autism, I admit that I was nervous.  It took us a long time to make that choice because we never wanted him to “feel different”.  But communication, right?  So we did it.  I talked to him about it, at his level.  I didn’t need to fear.  He was relieved!  The truth is, even if our kids aren’t coming right out and saying, “There is something different about my brain than everyone else’s” they feel different.  They feel it in the way they are treated, in the ways that they never reach the same “obvious” conclusions that others do, in their struggles, and so on.  J was relieved to know that it wasn’t his imagination and that there wasn’t something wrong with him.  He was pleased to know what was going on.  Now, all of the days since then haven’t been fabulous, but he is settled inside now.  There isn’t any more wondering.  Now there is the freedom to discover himself and enjoy all that his uniqueness has to offer.autism9

Nobody likes to see children doubting themselves, feeling like an outcast, not understanding situations. Nobody. I think it’s a little more poignant for a parent of a special needs child. But my dad gave me some very hard and good advice once several years ago. He told me to trust my son and trust God. He told me that I would not be able to shield J from all the things and the people in the world that would hurt him or judge him or treat him unkindly or unfairly, so I needed to have some faith. He reminded me that J has a purpose here, and that part of his mission must surely include other people. So I needed to believe in him, believe that the Lord would never put him through something he couldn’t handle, and believe in his ability to learn through difficulties. He said that J would learn to tell whom he could trust and whom he couldn’t. He was right. What he never said, or maybe didn’t suspect, was that J would have a profound impact on others. I have seen people change their attitudes and behaviors toward him just by getting to know him and his good heart. And I have seen others rise up around him to try and protect him from those whose hearts and minds remained unmoved. And I think, a lot of times, our kids are some people’s chances. Just by being who they are, they provide opportunities for people to grow or shrink. I recently had the experience of hearing from J’s Scout Leader (well, his wife sent me the message).  He’s one of those people that has definitely risen to the challenges that my son brings.  I have to share with you what his wife said.

“Hey Joe was talking about your boy tonight. Thought you would want to know. He says he likes that J talks with his eyes. He said he can tell how J is feeling and what he is wanting/needing, even if J’s facial expression or voice don’t change. He says his eyes say it all! Joe really likes J a lot. I thought it was pretty neat, and thought you would want to know.”

Most people don’t see the aftermath of a bad encounter when a mother or a father is sitting with a child who is hurting and crying. Neither do they see the mother or father watching with tear filled hearts as that child bravely goes into a new adventure with people that don’t disappoint…like my son’s Scout Leader. Our kids can really only do these things if we communicate with them, if they have a safe place. I could go on about this part forever, about HOW to communicate. But essentially it boils down to this. We need to go to them, join them in their life, in their reality. It can be hard to have open lines of communication with someone who has diminished speech capacity or anything else really. But we’re the parents. I am confident that just as God reaches our reaching, we can reach theirs. God doesn’t expect us to communicate at His level with Him. He meets us at ours. I know He helps us do the same thing for our children.autism7

I know I hit this hard, and I know that it isn’t the solution to all difficulties in the home.  But I can promise you this.  All of those difficulties will be lessened greatly if you can learn how to communicate with everyone.  Honestly, learning how to do this and practicing it daily has been one of the greatest blessings my son’s autism has brought my life and our home. I assure you that the practice of effective and loving communication will help your home thrive as well.

Take It, and Be Thankful


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