It has been quite some time since Wil has had a meltdown. His meltdowns were due mainly to a breakdown in communication. Now that his communication skills have vastly expanded and continue to improve his meltdowns have become very infrequent. He still has stubborn, dig his heels in the sand moments. I anticipate those stubborn times as they are quite common amongst kids with Down syndrome and a hot topic in our Ds support group. When these infrequent meltdowns do come, I don’t know how to handle them very well now. Wil is bigger, and they usually arrive unexpectedly. The crux of every meltdown, though, has to do with a barrier in communication.
This particular day Wil woke up on the wrong side of the bed. Nothing was making him happy and I asked him what was wrong. I received only a grunt in response. He was either unwilling or unable to communicate his feelings but thankfully his communication level has reached the point where I can now reason with him. I explained that this was his last day of summer school and didn’t he want to finish school on a high note? He thought about that for a moment then quickly agreed. He ate his eggs with gusto and went off to school in good spirits.
Later when I walked into the school to pick him up he was just finishing his occupational therapy session. The door to his classroom was propped open and I peeked through the opening. Wil was sitting at a table across from the occupational therapist, intently arranging blocks.
“Good,” the occupational therapist said. “Now let’s trace these words.”
She had him read the words then trace them. He was very focused and it was clear he enjoyed what he was doing. As a fun end to the session, Wil and the occupational therapist blew bubbles together. Bubbles are one of Wil’s favorite things to do and there were lots of laughs. When they both walked out the door into the hallway to meet me, the occupational therapist said, “Your son has the best manners. He is a pleasant boy to work with. Good job, mom.” I thanked her for the compliment and felt very proud of Wil for turning around his early morning attitude for an enjoyable and effective last day of summer school.
Directly after Wil’s summer school session, Katherine, Wil and I left to pick up Katherine’s friend, Jayden, for a play date at our home. Wil was very excited to see Jayden. When we arrived home, Wil followed Katherine and Jayden everywhere they went. At first that worked well as they ran through the corn field next door getting lost then found again. Wil ran and got lost and found with them. It was a hot day so after a time they came in the house for glasses of ice water. They then decided to cool off in the basement with the board game of Life before heading back outside again.
I was upstairs making their lunch when I heard Katherine cry out from the basement, “Oh, no, Wil! Why did you do that? Mom!” I went downstairs to see that Wil had flipped over their game. Little colored cars and play money were scattered all over the carpet. Wil ran into the little closet under the stairs that is “his closet.” It contains hooks for all his hats and shelves for his toys. He has a blanket and pillow set up in there. It’s his favorite place to play. At this moment it was his hideaway.
I helped Katherine and Jayden pick little pink and blue stick pieces from the carpet, place them back in their little colored cars, and re-stack play money. I called out to Wil to come over and help.
“No!” He responded through the closed closet door. I walked over to the closet to open the door and he was holding the door shut tight from the other end.
“Wil, you need to help clean up this mess.”
I pushed my way in, took his hand and walked him over to the game. He plopped on the carpet, crossed his arms and sat there unmoving. I took his hand as sometimes he will clean up in a hand-over-hand fashion. He pulled his hand out from under mine.
By this time the girls had the rest of the game cleaned up and started to play again. I asked Wil to come upstairs but he would not. I asked if he could play with them nicely but he didn’t answer. I sat with him for a bit, and when he seemed to be cooperative I went back upstairs to finish making their lunch.
Only a few minutes after I left I heard a repeat of what had happened earlier. I ran down the stairs and Wil again retreated to his closet. I was able to get him out but as soon as I did he ran right back to the game and started throwing pieces everywhere. I bear hugged him and gently talked to him as this usually calms him. This only angered him more and he started to kick. I let go and bent down to his level and he turned his head away. From previous experience the only way to calm him when he is like this is to remove him from the situation. He needs a few minutes of quiet time to himself to regroup his thoughts. At school they call it a “motor break” and take him for a walk down the hall. It works very well as he has time to calm down and typically returns in good spirits ready to work. The problem now was he was resisting going anywhere. We have a walkout basement so I took his hand and attempted to lead him outside. He took a few steps then plopped on the floor and crossed his arms and legs (this plopping on the floor is also a common thread among kids with Down syndrome). I could lift him when he was younger, but now he is over 70lbs and not so easy to move. I lifted him up under his armpits and carried him outside. He stayed rigid and kept his legs in a criss-cross position even as I carried him. He looked like a levitating swami. I carried him this way up the hill in his levitating swami position to our back door. He finally dropped his legs and walked in hesitantly. By now I was tired emotionally and physically coaxing his resistant 70lbs up the hill. I plopped on our Lazy-boy pulling Wil on my lap with my arms still secure under his armpits. I rocked him and sang Frere Jacques (his favorite bedtime song) to soothe him.
I knew what was going on. Wil was having a great time playing in the corn with Katherine and Jayden. It was equal playing ground. When they played the board game, though Katherine and Jayden were including Wil in the game, he didn’t feel the same inclusion. They gave him a car, he was spinning for his turn, but it was clear when they played and read the cards that it was a level beyond his comprehension. He wanted to be playing fully with them like they had played in the corn. Though a negative form of attention, flipping the game gave him their full attention once again. These meltdowns have become less frequent as he has matured and his communication has grown. But when he becomes tired, which I’m sure he was after school and plenty of exercise on a hot day, he had met his threshold. It was also clear that I had just about met my threshold with him physically.
I have a friend Jen, whose son Hayden has severe autism. Hayden can never be left alone. Jen must always be holding his hand, or push him in a stroller. She is constantly physically holding him in some way. Jen never knows when something may upset her son and he may decide to flee at a moment’s notice. Hayden has grown beyond her physical capacity so she has had to learn techniques through a behavioralist to keep him calm when something upsets him.
Though Wil and Hayden have different skill sets and needs, I find great strength in having a connection with people like Jen and Hayden. Sharing stories like the experience I just had with Wil are received sometimes with pity or unsolicited advice. These stories are shared for neither. They are shared for the sheer purpose of understanding. Having friends that share a true perception in these situations, like Jen and Hayden, delivers a great strength to me. We don’t have to share the exact same experiences to develop a compassion for one another.
As I rocked and sang to Wil thinking of Jen and Hayden, I immediately began to relax and regain my hope and strength that we would get through this. We are never, ever alone on this journey. That thought relaxed me fully and Wil responded to that. We rocked and we rocked and Wil finally got to a place where he could regroup his thoughts. When he did, he turned around to look at me and I wiped away his tears. He said, “Go downstairs now?”
“Do you feel better now? Can you play nicely with the girls?”
“Ok, then. Go ahead, honey.”
I followed Wil downstairs and by that time the girls had cleaned up their game and had moved on to playing “grocery store” with the play money from their game. Wil quickly grabbed his shopping cart and joined in. Katherine had gotten a big bag I have filled with plastic bags from my shopping trips and they were using those bags for groceries. Wil saw the big bag, ran over to it and started to throw all the little bags everywhere. He was laughing and playing and the frustration he showed moments before was long gone. The girls laughed and joined in under the confetti of floating plastic bags.
Later, after Jayden had gone home, I asked Wil to help me pick up all of the grocery bags and place them back in their big bag.
“Sure,” he said and immediately got to task. No coaxing required. No hand-over-hand. No retreat to his hideaway closet. I thanked him for his help and he said, “You are welcome, Mom.”
“You do have some good manners, Wil. I’m proud of you.”
“I know,” he said. He sure knows how to turn it around.