April is Autism Awareness month. I am not going to get into all of the stuff behind this month like a group’s motivation and purpose because there is no point, really. Others have, and they have done a fine job. However, I have decided to use this month to share some ideas that I have on how to be happy and have a harmonious home while being the parent of a child with autism of any kind. Honestly, though, I think this applies to any family with someone with special needs.
Recently I was privileged to be one of the presenters at a small homeschool conference held in my local town. I talked about Embracing Homeschooling with Special Needs. I have never in my life done anything like that before, and I seriously doubt that I will ever be doing it again in the future. Why? It was awful. No seriously. It was. If I could bring myself to be the sort of person that cried over things, I would have wept at the end of that day. Instead I made jokes about it when people would ask how it went. (Seriously, sometimes I feel bad for people that are nice to me. I am not the easiest person to understand or get a straight answer from sometimes.) I could bore you with the details of the horrific event, but I won’t. Let me sum it up by saying it was traumatic. I have since recovered enough to share with you all some things that I shared. I will only do them one post at a time, though, because no one wants to be overloaded. Don’t worry. By the end of April you will have many of my ideas to be able to pick and choose which you like and tweak them into your own thing.
This post will be when I tell you about our arrival into this world, the world of autism. It wasn’t the prettiest or most graceful entry, but we arrived nonetheless.
In August of 2001 I was married. It was lovely.
Life went on. In October of 2003, I had my first child, a boy. Bringing him into this world was absolutely travailing through the valley of the shadow of death. Not kidding. It still gives me goosebumps to think about, and not the good kind of goosebumps. But he was worth it, my boy. We named him after my father. I’m sentimental that way. I remember going home to visit my parents as a young mom with a teeny baby boy, he was only around 6 weeks old when I made the trip, and I asked my dad a question. I knew that I had never been a mother before, so I wanted to know if what I was feeling was normal or not. I said, “Dad, does he seem big to you? Not his body, but his soul.” My dad looked at my like I was a little nuts, but you know, he’s married. His wife has had seven babies, so he knows how to tread carefully around females and fluctuating hormones. Very cautiously he replied, “Hmm. I don’t think I understand what you mean.” So I explained to him that my son felt huge. That it was like his spirit was too big for his body. That his presence filled a room. I explained to him that it felt like there was a bigness to my boy that I couldn’t explain with his itty bitty newborn size. My dad said that maybe it was possible. But you have to know how he said it. He said it in a way that I knew I was being “handled with care”. I felt crazy, and swore to myself I would say nothing more about it.
Fast forward to the time when my son is 18 months old and I have my second child, a girl. She was amazing from the beginning, and she still is. I expected to feel the same thing, a bigness in her. I didn’t. She was different. Of course, after that my dad started to notice what I meant originally and began telling me that he could see it too. Ah yes. Validation. It always feels nice, doesn’t it? It may have been late coming, but I will never forget the first time my dad told me that “there’s something really special about him that can’t be ignored.”
Zoom forward again. J is three years old. I think he is wonderful, and to be honest, he is. Yes, I was aware that sometimes people couldn’t understand him when he talked, but I could all the time. So didn’t that mean that they weren’t really listening? And I knew that he was really fidgety and active, but I figured it was just his personality. Enter the twin sister. My twin sister. The first Brave Soul. I have noticed that God puts people into our lives frequently that get no praise, get no thanks, because they say the hard things.
They say the things that no one wants to say, but they need to be said. These people are so brave. My twin sister is like this. She always was like this with me. It caused many fights growing up. Anway, she came to me and told me that she thought there was something developmentally wrong with my son. You can imagine how well I received that. I didn’t. She persisted. She told me several times. She lives far from me, so sometimes she would call me on the phone and just talk to me about it, about the possibility. I wasn’t open to it, and it was starting to anger me. I like to think that I handled it well, but in all honesty I probably didn’t. After all, she was suggesting that there was something wrong with my child!! Finally I went home for a visit again. This time I was ambushed.
My parents must have been talking with my sister. I have never bothered to check this, but there is no other explanation. They sat me down at their kitchen table and talked with me. The second and third Brave Souls in this story. Throughout my life I have learned and been reminded many times that the parents we have (barring abuse and things like that) are given to us for very personal reasons. They are the ones, should they choose to do it, who can reach us. My parents took that job seriously. They were the ones who were able to get through to me that day. They were able to get through my anger that was shielding my fears and get to my heart. They were able to help me see that while they were being my parents, while they were stepping up and having the difficult conversation with their daughter, they were setting an example. I am J’s mom for a reason. I had a choice before me. I could continue to hide, bury my head in the sand and ignore the hard things and see only what I wanted to see (and do him a huge disservice this way), or I could do what I had been taught to do and what the Lord was asking me to do. I could do the hard thing…for my son.
I chose the hard thing, and it actually was exceptionally hard. As I write this, I like to think that this makes me one of the Brave Souls in this story. To step into the unknown and be fully aware that it is a place of heartache and difficulty is brave. My husband wasn’t convinced at first, but I plowed ahead anyway having already had the confirmation that it needed to be done. I figured he could catch up to where I was as he worked through things his way. The days of testing were painful. Not for J. He didn’t care once it was over, and he charmed everyone he met. But I cried in my heart because I was seeing things I had never seen before. My boy struggled. Was he a happy child? Yes. Was he loving? Yes. But did he have difficulties? Yes.
Well, I don’t have to tell you that life changed for our family after the results of all that testing. And then there was more testing. If you have had any experience with this stuff or anything similar, I think that you know what that feels like. You are bombarded by tests, by doctors, by results, by recommendations. You are inundated with information. And I really believe that everyone has your child’s best interests at heart. The thing is, and this is what really started me on the path to seeking wisdom, no one could promise me they were right. They would tell me that we just had to try things and see how it worked because everyone is different. Duh. I didn’t need professionals to tell me everyone is different.
At this point, I knew what to do. I knew this because my parents had taught me. I knew this because I had experience with it. I knew that I had to get the answers from the Lord. After all, He knew the answers. He didn’t have to guess at all. Didn’t He create my son’s body? Didn’t He give him this brain? Wouldn’t He know the answers? Of course He would. I have absolutely no problem cheating on the test of life and getting answers from above. James 1:5 says “If any of you lack wisdom, let him ask of God that giveth to all men liberally, and upbraideth not; and it shall be given him.” Well, people. I lacked wisdom. So I went to the Lord. I received my answers. I put my son in a special ed preschool, altered his diet drastically (whereupon we discovered he was allergic to milk! What a change in his behavior!), opted for some therapies, opted out of others, etc. We, my family and me, had crashed into the world of Autism. But I was resolved to do my best by my son, and that involved gracefully humbling myself before our Maker and asking for the answers. It still does…every day.
That’s the key. That’s my suggestion – cheat on the test. Ask the Master for the answers. Whatever stories I tell you in the coming weeks, when I tell you what we did, you have to know that the answers and guidance you get from God may look completely different from those. The point is that you get them and know how to get them.
Everyone that is a parent knows that it is pretty darn hard! Already we are asked to do something that we really don’t know how to do. Even if we had great parents, we don’t know what we’re doing! It’s hard! Then some of us were handed the special challenge of raising a child with challenges that differ drastically from everyone else. Holy freaking moly. Have you ever felt like you don’t really know what you’re doing with that child? Yes, if I could shout from the rooftops about how much I feel this, I would. For reals. But I have come to the conclusion that the Lord wanted us to feel this way.
I think He wanted us to feel uncertain so that we would instinctively draw nearer to Him. Howard W. Hunter said, “At various times in our lives, probably at repeated times in our lives, we do have to acknowledge that God knows what we do not know and sees what we do not see. “For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord” (Isaiah 55:8).
He knows what we don’t know. It was meant to be that way. We weren’t meant to know everything. We were, however, meant to find the answers…seek knowledge from the One true source, just like I mentioned earlier. I always think of my own children and how they react when they are frightened or unsure. The physically come close to me. They know I am their safety, their refuge. They know I will help them.
I’ll tell you a story that I finally publicly revealed at the conference. Before that time, only my husband and my mother had been told. My husband convinced me to never tell anyone because he thought it was “weird” what I had done. You’ll see. HAHA! When my son was just a couple months old, he had a terrible nasty cold. It was winter, so it was common. But he just couldn’t breathe well at night. And he couldn’t breathe at all when he was nursing. He was so congested. And the doctor would say, “Just use the saline and suction him out with the blue bulb syringe. He’ll be fine.” But he just wasn’t. The saline wasn’t penetrating the mucus because it was so incredibly thick. I honestly didn’t know that babies could make mucus that nasty. Runny noses? Sure. Thick dark green grody stuff? No. It was awful. He was miserable and hungry. He couldn’t eat because he had to have his mouth open to breathe. And I don’t know if you know this, but babies have to nurse with their mouths closed. 😉 We were both a mess after three days. So I prayed. I was a new young mom who was totally at a loss with how to help my child. My heart was breaking and I was worried. I knelt down next to my son and cried in prayer to the Lord, begging Him for an answer. I was begging Him to help me help my baby. Then it came. The answer was clear as day in my mind. I’ll tell you what I did that caused Mr. Fantastic to look at me screwy. 🙂 I knew that I was supposed to use my breastmilk instead of the saline. So I did. I had never heard of such a thing, but I did it. Boom! My son could breathe. Thus, my son could eat. I did it again the next time he ate. And the next time. And then I noticed something strange. By the end of that day, his mucus was lessening and thinning. I assumed he was recovering from his cold and discontinued the practice in the night. By morning he was just as bad as he was the day before, so I resumed again. I only had to do it for two more days, and he was completely back to normal. A few months later at church a lady who had spent time in Africa as a nurse on a mission told us how they had to teach the mothers there to use their breastmilk to clean their infants’ eyes and noses of infection because it was the only thing that could penetrate the mucus and it had healing properties. Immediately my heart started pounding and I remembered when I had begged the Lord for help for my son.
My point, people, is that the Lord gives us wisdom. If we want it, if we do our part, if we search and sacrifice, He gives it to us! (Now, since that time I have come to understand that a lot of people do this! I had no idea! For me, almost 13 years ago, this was uncharted territory! But again…can we say VALIDATION?! HAHA!)
In order to get the answers we need, though, we need to be asking specific questions. Don’t misunderstand me. Sometimes just crying out for help is enough. Sometimes we don’t have the words or even know what we need to ask for because we are in such a state of turmoil. In those moments, just crying out “Help!” is enough. Again, I think of my children. When they are truly in distress and can only cry for help, I immediately fly to their aid and somehow divine what it is they need. Generally speaking, though, I want my children to have thought out what it is they want or need so that they can ask for it specifically.
I believe that God requires more thought from us, more effort, more clarity in the question when we are not in situations of extreme duress. If we have more clarity in the request, we will have more clarity in the answer.
The questions that can, will, and do come up with having special needs children are literally endless. What if you’re stuck trying to find the best and right doctor or speech therapist or occupational therapist or reading mentor, or, or, or? ASK!! I cannot tell you how many times I have researched and questioned and done my job only to end up feeling completely overwhelmed in the end. Some people believe that anything is better than nothing. I disagree. With kids like ours, I have found that a lot of the time going with anything is much more damaging. I need to find the RIGHT thing. So I end up going to the Lord because He KNOWS! I say again, I have no problem cheating on this test.
The point? If we are seeking wisdom, we will get it. Always. Sometimes it comes directly to our minds and hearts. Other times someone brings it to us like a precious gift. I always shake my head when people say that the Lord doesn’t answer prayers with an email or a letter. I get what they’re saying, but the fact is that sometimes He does! I have had perfect strangers plop their butts next to me and literally start spewing answers to my prayers. This is a big deal for me because I don’t generally speak with strangers, and they can sense that I am not open to them at all. But that’s not the point. The point is that all we really need to know is that the Lord will provide. Always.
But we have to open the lines of communication. We have to go the source of all knowledge and open ourselves up to Him. Then when we get an answer, we need to follow through. I have learned so much more about how to use my brain and my heart together because of this path we are walking than I ever would have on any other path. We were given both so that we could use both…together. Think. Learn. Pray. Do.
Now, at the end of this post, I have to tell you that I am so terribly thankful for the Brave Souls in my life. Most of them are family, but not all of them are. People, we can all be the Brave Souls for our loved ones. We can. I am convinced, though, that it takes the wisdom of God to do it properly. Being brave goes hand in hand with seeking wisdom, otherwise you’re just stupid. No one likes stupid. 😉 That is just my two cents worth…although I think it’s worth more than that. HA! So that’s my first suggestion to you on how to have a happy and harmonious home with special needs. Be Brave. Seek Wisdom.