About two years ago our public school system hired
Dr. Jim Ball to come down to set up programs, train teachers and educate parents about early interventions and autism. Under his contract, he came down four times and held presentations for parents. While I learned very little new information, his presentations gave me a huge boast in awareness of just how much our faith and ministries helped us with Jonathan.
One presentation in particular, the school asked Dr. Ball to talk to parents about getting their children out of the house and into social situations. Many of the parents at this presentation had stopped going to church, out to eat in restaurants, attending family functions, going on vacations, spending time with friends, etc.
I was shocked and saddened by how many parents had become so overwhelmed by the autism that they were driven into their homes and cut off from the rest of the world. I'm grieved to admit how harshly I judged them while I still grieved for them as one by one they told their stories. And I'm talking about parents of high functioning kids, who were in the general education settings in the school.
However, I've found over the last few years, as I have judgmental thoughts, my Lord is quick to remind me but for His grace, I could just as easily be in the same situations in which I judge others. And I remember how I would not want to be judged harshly, but shown compassion and mercy.
I really don't remember specifics of Dr. Ball's presentations. I just remember in general my "take aways." I also remember he was very funny, engaging and no nonsense when it came to his opinion that life should not be stopped because of autism in the family.
I remember looking back over Jonathan's life and wondering how I did not end up in the place as these other parents? I'm not any smarter, any braver or any stronger than any other parent in the same situation.
How did I begin understanding even as an infant that Jonathan did not like loud noises, being around lots of activity and people, or in new environments? I marvel at how I figured out that from among the dozens of receiving blankets I had between the birth of two boys, Jonathan preferred Joshua's seven year-old
yellow blanket? How did I figure out that he needed to be tightly swaddled in it to be comforted?
I'm sure I don't have to tell you, friends and parents of special needs children, how hard the first few years of Jonathan's life were. Jonathan's third week home from the hospital he began inconsolably crying everyday like clock,always between the hours of 4 o'clock in the afternoon until 8 to 10 o'clock in the evening. I began suspecting it had something to do with Joshua's being home. Hard to believe now if you only know Joshua as a teenager, but when he was younger he was hyperactive and loud.
Jonathan was so difficult that my parents, who live close by, would see our need for a break. They would volunteer to watch the boys so Scott and I could go out. However, you could always see the look of dread on my parents' faces when we dropped Jonathan off because they knew what was in store for them. You could see relief in their stressed faces when we returned. Mom would spend the entire time trying to wrap him up tight enough in his yellow blanket and rock and carry him, trying to comfort him.
So, once again, how did we end up not being shut up in our home with an infant and toddler who obviously hated to be anywhere else and often didn't seem comfortable there either?
Again, I think it went back to what we believed. We believed we had a responsibility to our Lord, so we searched for ways to continue serving in our ministries regardless. We didn't stop going to church because Scott was an elder and had responsibilities to carry out each week. We didn't stop going out or having people over because we desired to build and maintain relationships with our congregation and neighbors. During Jonathan's first few years, our church was only a "plant." It had gone from a group of people meeting Sunday evenings, to meeting in a rented building for Sunday morning services.
On Sunday evenings, the entire church (about 45 adults and children) met in our house. I spent a lot of those evenings up in Jonathan's room rocking him and trying to settle him down. When we went to people's homes, one of us usually spent a lot of time in another room with Jonathan. As he got older, we started carrying around a
"survival pack" full of snacks and toys to keep him entertained. And we sat at the back of the church so I could slip out the door when he got too difficult.
We had Joshua, who needed our time and attention too. So we hauled Jonathan out to soccer fields, which in the summer was also a miserable experience, because Jonathan doesn't like heat. We had Jonathan in school assemblies and often one of us was outside in the parking lot while the other was supporting Joshua.
Then I got pregnant with Faith. I was on full bed rest by the sixth month. The last four months Jonathan was taken by neighbors and church members for the first half of the day. His environment constantly changed. The people he was around constantly changed.
A few years ago, I would've said that the Lord was blessing us because we were "seeking first the kingdom of God and his righteousness" and as a result of our faithfulness to make serving Him and priority, he "gave us everything else." (Matt 6:33)
Now, I don't know why the Lord chose to bless us. I have grown to believe that there is nothing I can do to earn his favor on my own. Nor do I believe a person can earn the Lord's disfavor.
I honestly can't answer why the Lord apparently blesses some and not others. I certainly don't think I'm any better than those parents I first mentioned. And as I read about what other parents are experiencing, I don't have answers for them either. I'm certainly in no position to say why my circumstances are different than theirs. All I can say is that there are people in much more difficult circumstances than me. Yet they can still say "God is good" and believe the same way as I do. I would encourage you to check out
Autism in a Word. Jeneil is much more articulate than I and her current circumstance are much more difficult than ours; however, she is seeing God's grace and provision in the midst of it. I only linked to one of her posts, but please look around her site. She tells stories which will break your heart and then turn around and tell stories which will bust your gut.
And while I'm at it, I'd like to thank Mrs. Bibi over at
From Misery to Happyness in 365 Days for giving me an Honest Scrap Award. Mrs. Bibi has a lot of difficult things going on in her life, but she is choosing to move forward in a positive attitude and to come out better on the other side. She is honest as she writes about her journey. Please encourage her in her adventure.
Comments (3)
I have often wondered the same thing. My son Josh was toted around everywhere I went whether he liked it or not. I was already the "outcast" at church, so I went and just cluelessly expected people to put up with whatever I needed to do to be there. Which sometimes meant sitting in the nursery, even though I wasn't "supposed" to be there. Stupid daycare laws made our nursery more of a daycare than a church nursery... I DIDN'T CARE. They couldn't MAKE me leave Josh there, since the only other thing they could do is call me right back in because he would freak out.
I'm not any different than anyone else, except maybe that I don't particularly care how people react.... I'm going to post about today in a minute and that will explain more.
Autism crosses all cultural and religious boundaries.
I'm religious but my religion is an orthopraxy (correct practice, including but not limited to ethics, functional virtues, hospitality, and equality).
You're religion is not only an orthodoxy (correct belief), it's a specific kind (Christian), obviously.
In the greater autism community, however, religion =/= (does not equal) belief because while you may identify your religion as a faith, not everyone identifies their religion as such.
Regardless, I'm glad that your religious community didn't shut you out and that you didn't allow yourself to become uber isolated. Those are the important points in your story from which people of all religious and other communities may benefit.
@sari0009 - Thanks for you comment. I try to let people know where I am coming from without implying they have to come from the same or to the same point of view. I appreciate your broadening my understanding.