Today is one of his “bad” days. I saw it as soon as he woke up. But, today was also bill and budget day, call the doctor day, in general office and paperwork day. Rather then think it through, I tried to plow on thru the day as if it was one of his good days. WRONG WRONG WRONG.
So now, 2 hours of holding him so he could not hurt himself, his siblings, me or inanimate objects any more, he’s asleep. His sleep is restless. He’s twitching and jerking around so much it’s amazing he’s asleep at all.
And I am guilt ridden. As many times as this has happened, shouldn’t I have recognized exactly how “bad” of a day he was having? Shouldn’t I have dropped everything and cared solely for him? Shouldn’t I have known better? Shouldn’t last night have tipped me off?
Last night…………..The first thing I noticed was early afternoon. Pook said he couldn’t go outside barefoot because the rocks hurt his feet. Anyone who knows Pook and his super hero pain tolerance knows this is highly unusual. Later that night, Pook couldn’t handle even the suggestion of sleeping in his room. He didn’t want his bed, his blanket, his bedtime bear….none of it. The mention of any of it seemed to terrify him beyond belief. He curled up behind me in bed and buried his head deep between my shoulder blades. (he also didn’t want anyone to “see” him). He dozed off. When his father came into the bedroom later, Pook seemed to be calm and sleeping. So, we decided to put him to bed. Except, Pook seemed to have some kind of built in alarm that triggered as he neared his bedroom door. Screams of “No, No, No…..I can’t do it” echoed thru the neighborhood. So, in defeat, he was carried back to my bed and my husband put out a pillow and blanket on the couch for himself. Pook slept fitfully for the first few hours, but as I didn’t awaken after that, I assume his sleep went into his “normal” (which still involves lots of movements and twitching).
This morning, Pook woke but looked as if he hadn’t slept in days. His puffy face and slitted eyes. His stooped shoulders. Then, there was his refusal to eat anything. His sis managed to get him to eat watermelon eventually. I sat at the computer working on the budget (bad idea) while I watched him eat his watermelon. He enjoyed the watermelon and the pictures I took, but his agitation was evident in the almost constant hand flapping that was going on. Hand flapping….something we haven’t seen him do in a few weeks. Hand flapping…..a red flag that things are going to get worse. Hand flapping……what should have told me to quit worrying about the budget and the bills and devote the day to him.
Just before nap time, he decided to eat the food that was offered to him several hours ago. He even decided to accept his grandmother’s invitation to come over for a bit. I sighed a breath of relief, sure that I had merely over-exxagerated what I saw earlier. Everything was going to be OK .
He came home easily at nap time, listened to his favorite song (Glory to God by Fee) and off to bed we went. He laid in his bed but when I went to leave the room he almost instantly hit full scale hysteria. OK , no biggie, I’d lie in the room with him for a bit. I laid down in his brother’s bed but Pook had to be closer. With our beds next to each other, I was sure he’d doze off. I mean, here in the past few weeks naptime has gone pretty well. Granted, some days it takes a while before he dozes off, but he’s taking naps everyday and that in itself is a miracle. Yet, he couldn’t be still. He kept twisting and turning. He kept talking and even his rope seemed to make him agitated. Yes, his rope….the one thing he’s been obsessed with since birth. The one thing that we can usually depend on to calm him. I thought that maybe he was just trying to get out of taking a nap although Friday’s is usually the day he tries his best to sleep. He knows that each Friday evening he gets to see his best friends and that nap is mandatory to go. So, I told him that unless he laid quiet, I was going to leave the room. (bad idea)
My leaving the room somehow translated in his mind that I was leaving the home. He ended up standing in front of the front door begging me please not to leave him (did I mention that 2 weeks ago he hit severe separation anxiety?) I decided to give him a bit of time up and about to calm down, then we’d try again. Except, he couldn’t calm down. He begin throwing things, breaking things, hitting, kicking, slamming his body into walls, etc. He was going to hurt himself, or others. So, I sat him on my lap and held him close to prevent injury to himself or me. This usually calms him in a matter of minutes. Not today. He grew more and more agitated. My attempts to release him would only result in immediate destructive behavior. After about an hour, he begin screaming that he was hungry and that if he didn’t eat he would die. I asked him how he knew this and he said he was told in a dream. He had to eat. He had to eat a peanut butter and jelly sandwich. I figured he wouldn’t eat in his extreme state of agitation, but figured it couldn’t make things worse. (bad idea) So, his brother made him a PB&J and brought it to him. He lost it!! It didn’t look like pizza and that was just to much for him. Yes, I said pizza and no I have no clue! He wanted it to be PB&J but kept saying, “It not look like pizza!” (could this be Apraxia?) All food was removed from his presence.
We had 2 full hours of holding. I would periodically attempt to release our hold, but before I could even fully release, he was reaching out to throw things, hit things, slam a part of his body into something. Towards the end of the 2 hours, he finally cried out, “I can’t stop Mommy. I can’t stop. I can’t stop. I can’t stop.”
What?? He realizes what he’s doing? He wants and desires to stop? He recognizes that somehow he can’t???? When did this happen? Has this always been the case and he was merely unable to articulate it? How long has he had these feelings?
I assured him that it was OK that he couldn’t stop it. I explained that even though he couldn’t stop it, God could stop it for him. That we just had to ride it out and trust God. I told him God would make it all OK . After all, I’d been praying while holding him. Why didn’t I let him know it?
Eventually, he had me wrap him up in a blanket. Completely cocooned. He said he couldn’t have anyone look at him and for me to tell his brother and sister not to look at him. He twitched, and jerked, and finally fell into an exhausted sleep.
And now I wonder. If I had dropped everything today and just focused on him, would it have escalated to his point? If he had gotten to bed on time instead of a bit late last night, would things have been better? When he first said that shoes hurt his feet yesterday afternoon, should I have attempted to cancel plans so that we could take him home and decrease all possible stimulation? Does today go hand in hand with the severe separation anxiety he developed a couple of weeks ago? Is it connected to his becoming obsessed with irrational fears that I’ve seen exhibited lately.
I called his neurologist before nap time today. It’ll be November before he can get in. November. An eternity to wait for answers to questions.
We’ve gone 4 and ½ years now with a broad spectrum diagnosis. His official diagnosis is “Sensory Integration Dysfunction with Autistic Characteristics and Migraines”. It’s been discussed that he shows signs of possible Aspergers and Verbal Apraxia. No diagnosis of either yet.
I just want to help my son. I just want days like this not to cause him so much pain.
I am so thankful that God never gives us more then we can bear. In my life, I always looked at how that applied to me. Yet now, I look at my son thrashing around screaming, “I can’t stop, I can’t stop” and am so thankful that I know what God is giving him is not more then he can bear.
My heart aches for Pookie today. I try to focus on all the positive things he can do due to his uniqueness. The combination of his super enhanced fine motor skills (due to super sensitivity in fingers) and his obsession with ropes equates his tying knots that would rival the best Boy Scout ever! His high pain tolerance and lack of fear results in his being able to perform incredible physical feats! His super strength proves to be a great asset. His recognizing that he hears, sees, and feels things that others don’t makes him more open to those that are “different”.
Yet today, my heart aches for him and the things he endures.
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