It was one of those dreadful not-so-ordinary days.
My son with autism was graduating from preschool and I had to bring him to the venue of his ‘yearbook’ photoshoot. For starters, he had to wear something he doesn’t normally wear: polo, necktie, slacks and leather shoes. Having to fit these prior to the day of the photoshoot was absolutely necessary for him to avoid anxiety on his part – and mine. It would have been better if I was able to get him to practice wearing these clothes a couple of times before the d-day but I was not. This resulted to a bit of a resistance on his part the day before. On top of this, he would have to wear a toga and the academic or graduation cap – which we could not practice since these will be worn at the venue.
What helped though was getting him go through the sequence verbally over and over. At first, whenever I would recite it, there would be a slight resistance, but eventually, acceptance. It helped that he knew what to expect on that day. I observed several times on different occasions how it has reduced or even eliminated his anxiety over something such as wearing graduation clothes. Still, even though he had practiced doing this prior to the actual event or occasion, I could never be completely assured that he would do so during the actual day, based on previous experiences.
As soon as he woke up, I went through the sequence about 5 or 6 times. I continuously repeated the sequence while he was taking a bath. Sometimes he appeared to listen and sometimes he was stimming verbally. I learned from observation though that when he is stimming, it does not always mean he is not listening. He CAN listen to what is being said to him even while stimming.
The next challenge was getting him to go to a particular place with 100% compliance. The area was not new to him but the actual room for the photoshoot was. He preferred to go to the first room he laid his eyes on and the room where we were supposed to go to was at the opposite direction, far from where he wanted to stay.
So, the little storm began. I had to do a little coaxing, okay, sometimes a lot of it! There were people having a party in the room and there was a buffet of gluten which my son was eyeing dangerously. He was not yet in that stage where he could resist the temptation of grabbing a piece of bread or a cupcake if it was sitting right in front of him. The next few minutes was a struggle between me and him which was just physically and emotionally draining. I was already sweaty, face burning with shame at the usual attention we would often get in public during these so-called struggles. I have, however, somehow mastered the art of not focusing on the curious or judgmental stares when my son and I are in the midst of such situation. A young girl, who seemed to have no idea whatsoever that my child has autism, approached me and kindly reminded me that the party was about to start. I looked at her calmly, a bit hurt, and explained that we are in fact, trying to leave. I looked around helplessly for someone to help us but there was none.
After finally managing to get him out of the room, he still strongly refused to proceed to the photoshoot venue. He stopped outside the door and it was at that point when I also had to stop, breathe for God’s Mercy and, yes, pray! I asked God, Was this a bad idea? Was it wrong for me to expect that he can actually do this?
I had been praying from the beginning of this struggle, but I realized I was praying in turmoil. The pressure of having to rush my son out of the room caused much anxiety for both of us. This time, I breathed deeply to calm my nerves..and my heart.
Be still and know that I am God. –Psalm 46:10
I prayed for endurance, patience – a lot of it! I prayed for wisdom to know what to do when the situation is not working as it should. I must have called some of my spiritual warriors: our Lady, St.Therese of Lisieux, my son’s guardian angel, to name a few – that I may trust God in difficulty and not complain when I do not get what I want or need. I looked at my son and saw that he was just as upset as I was, he couldn’t help what he was feeling. Then I looked away, praying.
Though a few years back he couldn’t, my son would now notice when I’m quiet. He could sense when I’m angry or upset. After a moment, my son’s voice broke into my thoughts, “Mommy!” He whispered loud enough for me to hear. “Yes?”
He told me, “Let’s go there.” He pointed in the direction of that room where we were supposed to go. I asked him again if he was ready to go to that room and he said,”Yes.” The next thing that happened was unimaginable. He held my hand and walked with me quietly without any trouble at all.
Whew! Praise God!
All he needed was time – and patience.
It wasn’t that easy when we were there. Another storm was brewing as he had to wear the toga – and he didn’t want to. God was wonderful to bless us with such patient photographers who were willing to adjust to my son’s needs. When they saw that he was not ready to wear the toga, they let him play for a while and shoot for the other kids. Gradually, I let my son touch the material for awhile, showed him how to wear it. He didn’t immediately wear it. He would put it over his shoulders like a cape, roll himself a bit on the floor (like in pretend play) then stand up. He did this over and over until he finally wore it! When the assistant photographer saw him, she excitedly called him for his turn. He didn’t have much trouble posing or smiling for the camera. He was a natural!
Looking back at the beginning of our journey when my son could barely speak a word, I remember when I bitterly asked God to take this ‘cross’ from us. He didn’t. Instead He allowed me – and my husband – to carry it and we held on to Him for support.
There came the time of hope, the kind that cannot be taken away even while facing an uncertain future, in spite of hearing negative comments from other people. What an incredible gift of comfort from the Lord! To hope when there is no reason to hope. For this reason, this verse comforted me:
Abraham believed and hoped even if there was no reason for believing. –Romans 4:18
Then the season of joy amidst suffering came. Suffering did not go away. It remained.
Sometimes or often, I catch myself dragging my cross. I realize the number of things that I want or need to do that I cannot do because of my son’s autism. But those things, if I am able to do them, can give me momentary happiness..but not joy. Then there are those instances, when I get caught up in that wonderful mental picture of how easy it can be to bring him anywhere, to a mall for instance, just walking, serenely like other neuro-typical kids, or eating in a restaurant without having to worry about GFCF food. But at present, I cannot.
Joy, at least here on earth, I have learned, does not mean the absence of suffering, or of sorrow. It comes from suffering and with suffering. Joy does not go away even when I cry, get hurt or frustrated or when I fail. Joy stays. It probably shouldn’t. But I can only be grateful for such an undeserved comfort from the Lord. Often after one of those little storms, I cry to the Lord. But surprisingly, by His Grace, after the tears, I am refreshed, able to rise and move on.
Here comes the season of embracing – and still sometimes dragging this cross, sometimes, not even sure if it still is, that I no longer ask for it to be lifted from me, unless it’s God Will. Whether it is or not, I feel blessed where I am – with a lot of work on my hands, with hope for the uncertain future but with growing love and faith for an ever Certain God.
Yes, there is joy in suffering. Suffering still remains. But so is joy, so is hope, so is love. And so what if it remains? What is my suffering compared to the Lord’s?
To God be the Glory!