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January 31, 2001

1-30-04

Here is a bit of history on Joshua and his autism. I posted it on a ttm board for babies today in response to someone else's post, but for many of you it will be new. Anyway, it belongs here, so here goes...

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I had a beautiful baby boy, all big blue eyes and blond hair that almost every woman was jealous of. He was so social and smart and quite a flirt. By 15 months, he could hold conversations w/ you, speaking clearly in sentences anyone could understand. Before he was a year and a half, he knew all of his colors and all of his shapes, and could count beyond ten. He was brilliant and perfect and full of love and life.

Then, slowly, so slowly I didn't notice at first, he started to slip away. He started to do some strange things. He would bang two toys together walking up and down the hall for hours and hours. He would line toys up in a straight line in the middle of the room. He refused to aknowledge his new baby brother in any way. He stopped answering questions, then he stopped calling us by name, and then he stopped talking all together.

In less than a year, my perfect baby boy would not look me in the eye, aknowledge me when I talked to him, play w/ his siblings (or anyone), eat anything but PB&J and mac n' cheese, sleep at night, or do anything besides bang two noisy toys together walking up and down the hallway while making a horrible high pitch squeeling. My son was completely gone.

It took us another year to dx him. He was dx'd by the most horrid doctor on the planet who spent less than 5 min. observing him and then told me that my son had severe autism. "Read this book." And, when asked if ds could hope one day to learn at least some independance, he told me that I would end up putting ds in an institution. "Now, see you in 3 mo." I never went back.

I was 21 years old.

It would be more than 3 years before my ds would say mommy to me again. I was led to believe it would never happen. Until the day it did, I had no reason to hope that it would.

To this day, he cannot answer a simple yes or no question. My friendly son is dead, and this new boy is moody and grumpy. He functions between the age of a 2 y/o and a 5 y/o depending on what skills you are talking about. He is 10 y/o. He still bangs, only now on his face, leaving bruises on his cheek bones. He still walks back and forth, just not all day long, making high pitched, unnatural squeeling noises.

He still is not toilet trained w/ his bm's. He went through a time period where he would play in his bm's, rubbing them all over things. This lasted about 2 yr. Before that, he was not urine trained during the day (until 8 1/2 yr old), and would pick at and eat his diaper after it was full. This lasted about a year.

In order to get him to eat something besides his two menu choices (that can't be healthy), I tried not serving him anything special. He skipped 5 meals in a row. So, I had to force feed him.

I had to shove one bite of dinner in his mouth and stand over him, pushing it back in again and again while he squeeled (his voice if VERY high pitched and goes right to THAT nerve), shook his head back and forth, tried to bite me, spit it out, pushed my hands away, etc. Over and over again I pushed it back in for 40 min. Finally, he swallowed one bite.

That was all for the first night. I had to retreat in tears. I'd love to say that the next night was easier, but it wasn't. It took longer. He is also very stubborn. After about 2 weeks, I could get 2-4 bites down his throat if I put them in w/ my fingers. I only did this at dinner, serving him sandwiches for lunch, because dh was home then to help w/ the other kids.

Today, he eats almost anything. It took me over 6 months for him to let me feed him most things. But I had to use my hands. Next, we struggled to have him take food from a fork. That took about 1 yr, where, after I was done eating, I could feed him some food from a fork.

After that, I had to teach him to feed himself. Then, there was the fact that he would only eat w/ his hands. Imagine going out to dinner w/ someone who is 6 or 7 y/o who eats w/ their hands and chews w/ their mouths open. Each single step was done w/ the same slow struggle, him fighting like I was trying to kill him. Today, he feeds himself half w/ his fork and half w/ his fingers. He CAN eat w/ a fork but it is an oral sensory thing (due to his diability.)

He also would run off and just keep going. When he was almost 3, I was sitting outside w/ him, bent down to latch the baby on, looked up and he was gone. He had gotten all the way out, past the security gate, and onto the main road. He got in the car w/ some strangers. Thank God they meant no harm. This is one of about 5 times he did this to me in 2 yr. He would open the front door and just walk out. We had to lock him in w/ a special gadget up at the top of the door because he would just turn the dead bolt and bolt!

I am more blessed than some. I have 6 children, 3 born and healthy, 1 w/ ADHD/aspergers, 1 w/ severe autism, and one in heaven.

God continues to tell me, "Trust me," when I get frustrated because my ds is still so very sick when so many other autistic kids have come so much further. This prayer continues to go "unanswered" (which is really a "no" or a "wait.")

"I love him more than you do," He says to me. I can't argue. Well, I shouldn't, but I do. I beg and cry and yell (yes, at Him.) When I stop and am all cried out and am finally quiet, He whispers to me and comforts me. He wraps me in His arms and His love, but He still doesn't say, "Yes."

I had a lot of anger at God for not answering my prayer about my ds. (Sometimes, I still do.) I would keep thinking maybe if I made a deal w/ Him, or if I just did X, or if I gave Him Y.... I would try this and ds would still be unchanged, unhealed.

So, I contemplated why, when missionaries go into a foreign land, why they can have miraculous healings, blind people seeing, people on their death bed right as rain the next day after a prayer, that sort of thing. What was going on there, in their hearts or their faith or their lives, that wasn't here in my heart or my faith or my life? Why wasn't I good enough for a miracle?

I struggled w/ this for a while (years) and thought perhaps their faith was more pure. Not only were they new Christians, w/ a new "love affair" for their Lord, but they knew trouble and grief and oppression (spiritual as well as political/physical) like I never did and probably never would. I guessed that perhaps it was because they had such a hard lot, or because they needed the miracles because their faith was going to be persecuted, that their requests were granted while mine went unanswered.

Then it hit me one day, in the shower (where I always lay my heart out to the Father), that this was still all based on works and man and us and the physical world. But God says our works are filthy rags to Him. He says that we do not battle w/ flesh and blood, but that our battle is spiritual.

So, I thought about Christ and the apostles and their miracles. Why were they performed? And it hit me. Miracles are not done to make our lives easier or to please us or meet our wants or even our physical needs. As long as we don't understand this we struggle w/ how God can let bad things happen.

Miracles are given to serve God's kingdom. This is why good people die--why good Christian men, who have small children, get cancer and die--because it isn't about us and it isn't about our physical lives at all. I feel now that I finally understand, to a point.

God performs miracles, steps in and changes the outcome of this fallen world, when it serves to expand His Kingdom. When it serves His will. Just as we are supposed to be serving Him and furthering His Kingdom, and not seeking happiness for ourselves, we are to pray for His will first and foremost. Our purpose is to bring in His sheep.

This doesn't mean that we can't share our hearts w/ Him. He wants to know, He wants us to share our sorrows and joys w/ Him, and He does care. He wants a deep, personal relationshipe w/ us.

But sometimes when we hurt He doesn't "fix it." He simply comforts us where we are at (w/ a disabled son, or w/ IF, or single, or whatever) but has other plans for us and our lives. We must trust that His plans for us our in our best interest and that He has made them w/ love in His heart towards us.

When I get bitter about this, about the unanswered prayers, I remeber the Christians in a communist country (Vietnam?) who were tied down to a road w/ their children and had to watch as a bull dozer rode over their children first and then them, starting at their legs. They sang hymns of praise to the Father as they died. I was so touched by their faith, but it left me w/ questions. If it were me in their place, would I praise my Father w/ the last of my breath or accuse Him of abandoning me?

Now, I'm not perfect. I still try in my mind to find a way to manipulate the situation to cause my ds's healing to "further the kingdom." I still think that, if only I can make this happen, if I can find a way to convince God that this would be His will, then ds will be healed.

But there is joy in my life, too. For me, I have my dc. I have been married for 11 yr (tomarrow.) I have both my parents and all my grandparents and all my siblings (1 sister and 3 half-brothers.) Besides one cronic disease, I have my health. I get to stay home and raise and school my kids.

In heaven, my ds will be whole again. In heaven, I will finally get to know him and speak w/ him and have a realtionship w/ him. Sometimes it is so hard to wait. But, there is a hope that lives w/in me. I hope I was able to share some of that w/ you.

Best wishes,

Khy