A little off topic

My son has been diagnosed with Sensory Integration Dysfunction, Migraines, Autistic Characteristics and most recently asthma.

This morning I saw a news article about an Oklahoma couple fighting to return their 11 year old adopted son to the state. He has been diagnosed with Fetal Alcohol Syndrome and Post Traumatic Stress Disorder.

Weddings and Pook

Although I intend to blog more regularly then this, I am 9 days away from my upcoming wedding and therefore short on time. I want to share with you how having a wonderfully amazing child like Pookie has affected our wedding.

Pookie isn’t fond of locations that have many people. He hears everyone at once, unable to filter or block the sound as we do. It causes him pain and can drive him to the point that he is screaming at the top of his lungs. I suspect he does this to drown out the sounds around him. As painful as his screams are to others, and myself we must remember that our regular voices are as painful to him. This said, you can imagine my concern with the wedding and reception following. So, how exactly do you have a wedding with a child whose sensory issues MUST be considered?

Wedding attire: This took quite a bit of consideration on my part. Clothing must be devoid of large seams, very soft, a fabric that doesn’t make noise, familiar, comfortable and super soft. I plan to wash the clothing multiple times before putting them on him and will then have him wear them a few different days prior to the wedding. Of course, this opens the possibility for the clothing to get stains but the alternative is to hold him down kicking and screaming the morning of to get him dressed. He is in the stage that he wants to do everything his older brother does and since their clothes match….I’m hoping this helps!

Procession: Now, with this one, we have no idea. Since my oldest son is giving me away he can’t go down the aisle with him. This leaves him walking down the aisle with his sister. They love each other but for whatever reason he never listens to anything she tells him. Since she’ll have a bouquet we’ll probably let him have the ring bearer pillow. Will he make it down the aisle? No telling. Family members will already be seated in the front row so if all else fails, we’ll coax him with candy! (not a usual occurrence).

During the wedding, do I expect him to be still and quiet? Absolutely not. I’m guessing he’ll sit for a couple of minutes before crying for his Mommy. At this point in time, I fully expect him to end up on my lap waving to everyone in the audience. Of course, he could end up running out of the room and heading to the nursery. Either way, we’ll still be married at the end of the day so its’ not that big of a deal!

Reception: I can see it now. A room cramped with people chattering, food, and a cake. Yeah, this will be fun. Fortunately the nursery is just off the room. I’m not sure how it will work but really, what’s the worse case scenario? Fingers in the cake? Screams erupting as he runs himself into walls? We’ll be surrounded by people who love us. At the end of the day, we’ll still be married! 

Bubbles: Pook loves bubbles. Depending on what he needs, we can use them different ways. Blowing them himself calms him. Having someone blow them for him and allowing him to pop them allows him an outlet. So, our wedding will have bubbles! I fully expect, and want, Pook to be all over the place popping as many bubbles as he can when all start blowing them! 

Honeymoon: Well, since Pook’s been having such a hard time the last few weeks (worse then he’s been in over 6 months) we decided that we could not in good conscious leave him with a sitter. And, if one child will accompany you on your honeymoon, might as well take  the other two as well. So, honeymoon changed to family vacation. Except, we can’t really book a week anywhere. Pook doesn’t always do to well in new places. If he’s not able to handle it, we’d leave. So, no week long reservations. Instead, we’ve decided to use home as “base”. We’ll take day trips that don’t require to far of driving time. We may stay a night here or there in a hotel, but we’ll space nights at home in between.

Overall, having Pook has required us to re-evaluate how we do the wedding and honeymoon after. It’s not a problem, just different. How will Pook see it all when it’s over and done? Hopefully, this won’t be painful to him. If it is, hopefully someone will be with him each step of the way to make sure he’s comforted. Hopefully he'll talk about all the bubbles! He’s a trooper and I know that when all is said and done, he’ll still light up our lives with his vibrant smile, his wonderfully funny jokes, and bounce as all great bouncy balls do (and Tigger to!)!

His Favorite Pajamas that He Can't Stand

I can never buy new clothing for Pook. Second hand tends to be softer and more palatable to his skin. So, when I saw a second hand pair of pure cotton pajamas the other week, I picked them up for him.

Now, you have to understand, anything “new” or “different” doesn’t go over well with Pookie. It’s a journey to get him to put on any article of clothing he hasn’t already worn and recognizes. However, like younger siblings, he wants what his older brother has. So, his brother got him all excited about his new pajamas and how they were super hero pajamas. (Apparently Power Rangers although none of my children watch the show…I thought it was Robin). So, finally we get him to put on his pajamas and go to bed.

Another thing you have to understand is that getting Pook to change his clothing for any reason is another battle. Again, it’s a change and to Pook, any change is a bad change. So, he typically wears his pajamas all day until we need to go somewhere. The other night he even wore his pajamas to church. Yes, I said he wore his pajamas to church. When you have to choose between going to church with your son in pajamas or staying at home cause the meltdown that ensued when you tried to get him dressed lasted the rest of the night…..well, you see what I mean.

So, here we are this morning. Pook is wearing his pjs and loves them. They’re “Power Ranger” pajamas and he’s thrilled. Only, the legs are a bit long. So, each time he walks/runs, they want to fall down around his feet. This is completely unacceptable to him. It’s agonizing to him and completely short circuits his entire being. But, he cannot accept that changing his clothes would be a good thing for him. Change is bad, plain and simple. So, I’m now rolling them above his knees every 5-10 minutes. I know when they fall down again cause I hear his blood curdling scream and his thrashing around.

My entire day will go this way. If I’m lucky, maybe I’ll be able to get him in the bathtub or shower later. Here lately, that’s the only way we manage to get his clothes off of him. Of course, I do still occasionally find him fully clothed, immersed in a tub of water, and no idea that anything is not as it should be! 

Introduction

 Often, since the birth of my youngest child, I've felt completely inadequate as a parent. How is it that I have always been able to anticipate my older two children's needs, but can not do so with my youngest? Why is it that no matter how hard I try, I never seem to know what my youngest son's world is like? 

My youngest son is lovingly called "Pookie”. He's vibrant! Always in a state of motion, he never stops moving. He has a super high pain tolerance and no sense of fear. I have no doubts that he'll make Evel Knievel look like nothing more then a mere novice! Even in his sleep, which isn't near as long as it should be and doesn't come easily, he is moving. On a daily basis, things that we don't notice cause him pain. The breeze from the ceiling fan, the sound of the siren miles away that no one else hears, the seams in his socks. Pookie isn’t able to verbally express himself as he wishes and unfortunately he doesn’t know near enough sign language to help him much. He never gives up trying to speak though. He’s one determined child. 

Pookie screamed practically non-stop for the first 16 months of his life until diagnosed. Nothing helped him and the things that should have soothed him seemed to cause more pain. He would go as long as 3 days with no sleep at all. When he would fall asleep, he cried and thrashed during his sleep and slept no more then 4 hours at the most. Holding him hurt him and it was near impossible to try to nurse him. No one seemed to know what was wrong, but I knew my son was in pain. When I realized that he was trying to speak but was unable to, I pushed for him to get speech therapy. In the very first session with his speech therapist, she recognized what was going on with him. I was able to get him in to see a neurologist and he was diagnosed with Sensory Integration Dysfunction, Autistic Characteristics, Migraines, and Undiagnosed Sleep Disorder.  

So our journey begin. Somehow I thought that having him diagnosed would mean that we’d be able to educate ourselves to the point that we’d be able to make everything better. As I started to learn what exactly his diagnosis meant, I thought that we’d be able to “fix” things so that he wouldn’t have “meltdowns” anymore. I thought that surely within a year or two he’d be mellowed out and able to handle life. I thought that with plenty of speech and occupational therapy, play therapists, and his wonderful neurologist that we’d have it all worked out in no time. I thought wrong. 

Pookie has improved drastically. I know now how to dress him, how to decrease his daily sensory stimulation, many of the things that cause him pain, and even places to avoid. I can see a meltdown coming and sometimes am even able to herd it off. Throughout the summer we’d even gotten down to 2-3 meltdowns a week. At times, we’d have an entire week where his meltdowns only lasted hours, versus all day. 

Yet, three weeks ago, things changed. Pookie started reverting back to previous ways. He started having meltdowns daily, then several times a day. In 3 weeks we’ve had only one day meltdown free. Despite his medication that worked so wonderfully before, he’s now struggling to sleep and doing so for only short periods of time. His days are filled with non-stop motion despite his exhaustion. His inability to regulate his body temperature seems to be getting worse as well. Of course, since he’s running himself constantly it could just be that he’s overexerting himself, thus causing the overheating. He’s miserable and once again the feelings of inadequacy overtake me. 

I want nothing more then to help him. I want to comfort him, soothe him, calm him and let him know that it’ll all be OK. Yet, he’s trapped in a body and mind that is so different then mine. He’s trapped and unable to even tell me what’s wrong. 

I haven’t given up hope. I KNOW that Pookie is going to grow spiritually, mentally, emotionally and physically in ways that will show us exactly how wonderful God is. I KNOW that Pookie will touch people in places of their hearts usually left guarded. I KNOW that God sent Pookie to this earth because this world needs him, just as he is. 

Pookie isn’t “broken”. He doesn’t need to be “fixed”. His life will always be different from many other children. He’ll always hear, feel and see things that they can’t. He’ll always feel physical pain at things that bring others happiness. He’ll always have to plan, or have planned, his life according to these differences. But, Pookie is whole, complete, and here for more then we can even begin to imagine. 

This blog will be not only my, but also my soon to be husband and our two older children’s journey into what we perceive Pook’s life to be like. Maybe one day this blog will be Pookie’s. His way to reach out to the world and tell you exactly what his life is like. Until then, the four of us will do all we can to extend his life outward so that maybe, just maybe, others might be helped in ways yet unseen.

Introduction

 Often, since the birth of my youngest child, I've felt completely inadequate as a parent. How is it that I have always been able to anticipate my older two children's needs, but can not do so with my youngest? Why is it that no matter how hard I try, I never seem to know what my youngest son's world is like? 

My youngest son is lovingly called "Pookie”. He's vibrant! Always in a state of motion, he never stops moving. He has a super high pain tolerance and no sense of fear. I have no doubts that he'll make Evel Knievel look like nothing more then a mere novice! Even in his sleep, which isn't near as long as it should be and doesn't come easily, he is moving. On a daily basis, things that we don't notice cause him pain. The breeze from the ceiling fan, the sound of the siren miles away that no one else hears, the seams in his socks. Pookie isn’t able to verbally express himself as he wishes and unfortunately he doesn’t know near enough sign language to help him much. He never gives up trying to speak though. He’s one determined child. 

Pookie screamed practically non-stop for the first 16 months of his life until diagnosed. Nothing helped him and the things that should have soothed him seemed to cause more pain. He would go as long as 3 days with no sleep at all. When he would fall asleep, he cried and thrashed during his sleep and slept no more then 4 hours at the most. Holding him hurt him and it was near impossible to try to nurse him. No one seemed to know what was wrong, but I knew my son was in pain. When I realized that he was trying to speak but was unable to, I pushed for him to get speech therapy. In the very first session with his speech therapist, she recognized what was going on with him. I was able to get him in to see a neurologist and he was diagnosed with Sensory Integration Dysfunction, High Functioning Autism, Migraines, and Undiagnosed Sleep Disorder.  

So our journey begin. Somehow I thought that having him diagnosed would mean that we’d be able to educate ourselves to the point that we’d be able to make everything better. As I started to learn what exactly his diagnosis meant, I thought that we’d be able to “fix” things so that he wouldn’t have “meltdowns” anymore. I thought that surely within a year or two he’d be mellowed out and able to handle life. I thought that with plenty of speech and occupational therapy, play therapists, and his wonderful neurologist that we’d have it all worked out in no time. I thought wrong. 

Pookie has improved drastically. I know now how to dress him, how to decrease his daily sensory stimulation, many of the things that cause him pain, and even places to avoid. I can see a meltdown coming and sometimes am even able to herd it off. Throughout the summer we’d even gotten down to 2-3 meltdowns a week. At times, we’d have an entire week where his meltdowns only lasted hours, versus all day. 

Yet, three weeks ago, things changed. Pookie started reverting back to previous ways. He started having meltdowns daily, then several times a day. In 3 weeks we’ve had only one day meltdown free. Despite his medication that worked so wonderfully before, he’s now struggling to sleep and doing so for only short periods of time. His days are filled with non-stop motion despite his exhaustion. His inability to regulate his body temperature seems to be getting worse as well. Of course, since he’s running himself constantly it could just be that he’s overexerting himself, thus causing the overheating. He’s miserable and once again the feelings of inadequacy overtake me. 

I want nothing more then to help him. I want to comfort him, soothe him, calm him and let him know that it’ll all be OK. Yet, he’s trapped in a body and mind that is so different then mine. He’s trapped and unable to even tell me what’s wrong. 

I haven’t given up hope. I KNOW that Pookie is going to grow spiritually, mentally, emotionally and physically in ways that will show us exactly how wonderful God is. I KNOW that Pookie will touch people in places of their hearts usually left guarded. I KNOW that God sent Pookie to this earth because this world needs him, just as he is. 

Pookie isn’t “broken”. He doesn’t need to be “fixed”. His life will always be different from many other children. He’ll always hear, feel and see things that they can’t. He’ll always feel physical pain at things that bring others happiness. He’ll always have to plan, or have planned, his life according to these differences. But, Pookie is whole, complete, and here for more then we can even begin to imagine. 

This blog will be not only my, but also my soon to be husband and our two older children’s journey into what we perceive Pook’s life to be like. Maybe one day this blog will be Pookie’s. His way to reach out to the world and tell you exactly what his life is like. Until then, the four of us will do all we can to extend his life outward so that maybe, just maybe, others might be helped in ways yet unseen.

Introduction