Too MUCH!!!

That's right! At this very moment it's all just way too much! At this moment I can't imagine how I'm going to handle all the things I'm supposed to be able to do. To even list it at this moment is simply too much to ask of me. Hopefully in a few moments from now everything will seem do-able again.

That's how my life is lately. Long stretches of getting it done and feeling that I've done all that I can for this or that, followed by periods of time feeling deeply lost and alone and overwhelmed.

I can't quite describe what I've been up to for the past few weeks in a way that could be truly appreciated by the masses. I can say that for me, it has been a journey of discovery and enlightenment. I am grateful for the discoveries and knowledge I have gained through painstaking research. What comes with that is a clear understanding that I have a lot more to learn! UGH!!! It will never end!! There will always be more that I must know and more that I must do! There will always be more theories than answers and more ideas than finances and time to support trying.

This is the part where many projects are tossed to the side and given up on. Sometimes that's exactly what I'd like to do. Admit defeat and put myself out of misery!

The problem is, I can't give up. I am it. It all falls to me. Success or failure in this great endeavor will be measured by my ability to stick to it and not give up. I have to turn over every stone, chase down every lead, try every suggestion. I have to become everything needed. I have to provide the information, the plan, the support.

But right now. . . . . . . . . It's just TOO MUCH!

This is the part where I need to stop long enough to have a good cry and get it out of my system. It's a good time of day to do this as three of my four kids are at school and my youngest is napping. My sweetheart is at work. No witnesses. The perfect time to have a melt down. There's even enough time to clean myself up afterwards and no one will be the wiser.

The ironic thing about sharing this on my blog is that everyone will know the thing that I often try to hide. I'm not perfect. I can't always handle it. I sometimes have to quit even if it's for just a few minutes. Somehow it gives me strength to go on. I put the hard stuff aside for a bit and try to pretend that it's not my hard stuff or that it's not as hard as all that. I look at if from a different angle and after a bit I can dive back in for more.

I feel like a warrior. I'm in this epic battle for the life of my child. I have some help and some support but no one else is on the front line. No one else truly understands what I have to do and what I must do. No one else can take my place. It is my place. My divinely appointed role. At this moment I feel strong and tall. I feel tough. I feel like my Heavenly Father trusts me and believes in my ability to do this. He must since He's given me Westley.

This is what being Westley's mother means. I have to learn, fight, provide, challenge, encourage, cheer, comfort, sooth, convince, plan, budget, research, schedule, ask, tolerate, accept, love.

These last few weeks as my pregnancy has calmed to a reasonable norm, I've had time to focus on Westley. He represents the largest investment of my time lately though other things have demanded their part of me too. I have learned a ton about my Westley and have appreciated the understanding that comes with that.

I now believe that the most appropriate diagnosis for him is PDD-NOS with SPD. What does that mean exactly? I couldn't put it in short enough terms right now. PDD-NOS stands for Pervasive Developmental Disability - Not Otherwise Specified. Kind of cryptic right? Pervasive means that it affects all aspects of his life. Developmental refers to the delays that are evident through measuring him against typical five-year-olds. Disability means he can't control it and didn't choose it. Not Otherwise Specified is what distinguishes it from Autism or Aspbergers or the other four or five different kinds of PDD. PDD is the umbrella under which all these things fall. SPD stands for Sensory Processing Disorder and is sometimes also called Sensory Integration Disorder (SID). This refers to how information from Westley's senses are processed in his brain. He does not interact with his environment like the rest of us. While his vision is 20/20, the information in his brain isn't handled appropriately. Therefore, he has visual spatial problems. He can't for example make an internal map and gets lost easily even if he's navigating from one door to the next, he can't remember the direction he should go. Other senses are affected. He's afraid to slide and swing, they mess with his stability and he feels lost in space. Loud noises, strong wind, unexpected touch like brushing his hair against the grain are all things that are difficult for him to tolerate.

I could go on and on and share every detail about what I've learned but I don't have the time or energy right now.

The treatment for these disorders is the same treatment prescribed for autism. Again, I won't go into details right now.

Because Westley doesn't exactly have Autism or Aspbergers, only parts and pieces that can best be described with a PDD-NOS diagnosis, it's difficult to get the world to recognize and provide the treatments that would best serve to improve Westley's interaction with the world.

The school has tested for Aspbergers and found he didn't quite fit it. They say he's on the Autism Spectrum but aren't sure what to do with such a "mild" case. They want me to accept a Learning Disability label and the therapies and helps that come with that. They want me to wait two years and test him again and see if he fits a more classic and easily diagnosable form of Autism Spectrum Disorder.

My problem with that plan is that it doesn't address the core of his disorder. If we wait two years he will definitely be worse and as an older child, harder to effect long term change. An autism diagnosis comes with potential qualification for at home therapy, a more proper approach through the school system, tax deduction for the money we put into equipment for our home.

I am currently trying to convince the school to do what I think is the right thing for my son. If he's on the Autism Spectrum, call it Autism and throw every available resource at him and do everything possible to improve his outcome. Then in two years we'll see if he's doing well or not.

I don't want to fight with them. It'll be his school for a long time. I'm not someone who generally enjoys adversarial relationships. I am frustrated with a world and system that often ignores the instincts of mothers and glosses over their opinions as hysterical or ignorant. I know what my rights are and if I'm forced to fight this I know how to do it. I just wish I didn't have to.

We're scheduled for a thirty minute meeting one week from tomorrow. Everyone will be there. His current team (speech therapist, occupational therapist, pre-K teacher, pre-K director, school psychologist) and the new guys (kindergarten teacher, new school councilor) and I will discuss Westley as a team. It's the transition meeting for leaving pre-K and going to Kindergarten. My job is to be prepared to convince everyone there to call my little apple, an apple! Quit trying to tell me he's an orange! I have to have my research, my notes, my observations, my recommendations, my requests ready to go in duplicate form. It's daunting and will be time consuming.

That's my "too much" for now! That's why none of you have heard from me in a while. Any suggestions would be greatly appreciated.

Thank you all!