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.