My husband went to work today with one of Pook's toys in the truck. Pook is now standing on the front porch with his oversized underwear on (since ones that fit drive him crazy) and an adult cowboy hat on to block the sun from his eyes screaming for his Dad at the top of his lungs. He's calling him to come home and bring back his toy. He can't fathom that his Dad can't hear him. We've tried to explain that it's far away, but Pook says he can hear far away (farther then any of us). We've explained that there are fans running where his Dad works and he can't hear him over the fans. But, Pook wants that toy. He's had it for days and it doesn't process in his mind that it can be separate from his body. It's supposed to be 94 degrees today, so obviously staying on the front porch in the sun is NOT an option. *sigh

The kids attempted to lure him in with a balloon he got at the grocery store last night. But, the helium is no longer making the balloon float and now he's spazzing because A) he doesn't have his toy and B) his balloon won't "work".

He's still not quite leveled back out to where he usually is. Not sure what is going on. I called to get him into his neuro but it will be no less then 4 months before they can squeeze him in. That's the downfall to having the best neuro ever!

His sleep cycle is messed up again. I honestly feel I can contribute it to the neighbor periodically having music played so loud through the night that it wakes him repeatedly. It's such hard work to get him on a good sleep schedule (good for him is if we hit a 4 hour stretch, and more then that are miracles from God). His bedtime, pillows, stuffy, sheet, location, etc all has to stay the same night after night to ensure sleep. Banging music and bass from next door does not help that at all!!

The worst part for me personally is the lack of time to get anything done. Then, when I do have a bit of time (like now as he stands on the front porch)I'm so emotionally drained that I take a bit of time to release (hence my blogging).

Pook has recently gotten back to the point where everything has to be in a precise location. Everything must be put back where it came from. I'm sure this is due to our moving from one house to another. This is most likely also what is causing him to short circuit. If I had my way, I'd never move again! OK, well, if I could get a place he would do well in I'd ever move again.

I'm grateful for all those that understand where he is, what he's going through. I'm grateful for those who offer their support to me. I'm grateful for those who offer support to Pook's older siblings, like those who facilitate Sibshops (a support group for children whose siblings have special needs). I'm grateful that I am part of a church that has the best child care workers EVER and that once a week I get to spend time being taught of God uninterrupted.

Most of all, I am grateful that God loved me so much that he gave me this vibrant, beautiful, unique little boy to bring excitement and joy into our lives! I wouldn't trade today for the world!

Pook is having a "BAD" day.....

 

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.  

Pook's Amazing Thoughts....

There's just so many ways Pook has grown lately, and I'm not talking physically. 

First, Pook has a girlfriend! Yep....a girlfriend. It doesn't matter at all that she's over a decade older then him, he adores her. Each time he sees her he pulls at me until I take him to her. I have no idea why I must take him to her, once he's with her he forgets I exist. He snuggles up to her, bats his eyes at her, and is calmer then he has ever been. She puts him down and he follows close behind her. So close I'm sure she can feel his breath! He holds both his hands in front of him, like a small puppy that rises on it's hind legs begging for treats. She stops, he stops. She turns, he turns. The look of adoration on his face leaves me speechless. (and not many things can do that!)

Second, his concepts of himself and the world around him are growing. He told me the other night, "Mommy, I can change my mind! Watch....yes, no, yes, no, yes, no." A few days later he asked me about someone else, "You mean she changed her mind?!" He seemed quite shocked that someone else was capable of doing so! 

Then, there is the fact that he's started telling some tall tales. And boy has he told some whoopers!! I know, it's a normal stage of development. I'm pleased that he's right on track with this stage. I can't help but giggle as I hear the stories he tells his father and as I see the expressions on his father's face. I'm not sure which part I like hearing the best.....Pook's stories, or his father's responses!! 

The other night, leaving a friends house, I told Pook to get his car seat straps on. He told me he had. I looked back and thinking I was going to be on top of this conversation, asked him to show me. He looks at his chest, pretends to pick up his straps, lifts them up for my inspection, and then looks  me straight in the eye. I tell him that I don't see any straps and completely exasperated with my incompetence he says, "They're invisible! Duh!" (Duh....my 4 year old says duh!) Sooo, now Pook has his invisible straps and the "other ones" I force him to buckle! 

Everyone has noticed a difference since Pook started his cod liver oil. It's taken 4 years before his little bowels could tolerate it, but I am so thankful to God that he can now. His speech is improving by leaps and bounds, his attention span is longer, and he's soooo much calmer. At this stage, if it weren't for his speech delays and his obsessive compulsive behavior, he'd be clocked at "typical". 

It's taken 4 long years full of tears, both mine and his, but finally it looks like things are starting to settle down. All the things that I was told couldn't happen with him, are. All the progress I was told he couldn't make, he is. All the dreams I've had for him are starting to come true. 

Thank you to each one of you who believed in Pook. And thank you God for creating him exactly the way he is. Uniquely divine!!