Sunday, June 27, 2010

A open letter

When I found out that my Li'l boy is potentially Gifted with SPD. All I want to do is to keep the reality from relatives, friends and other people around us. But somehow my son grew up as a smart and caring li'l boy, which made me decide to share with you my life with my boy as we walk in the different phases of life.

When he was born, he cries all the time. The doctor thought it was colic, or digestive problems, so those issues were treated... But as a mom knowing your child something still didn't seem right, he always wanted to be in his diaper and wanted a hug most of the time.

I did some research until I finally read an article about the SPD with the title "ADHD Impostor". Learning about the SPD felt like a light bulb had gone on and finally I understood why my son was struggling and why we were so frustrated with his behaviour at times. I don't want my son to have a label but I do want the best for our son and want him to be as amazing as I know he can be.

Back then, I started to search for the best developmental doctors in town and finally found one. It was a great help for us to really understand what my li'l boy was. After reading the diagnosis and some of the signs of SPD and what it feels like to them, I cried and cried to know that this is what my son feels everyday. Then the guilt sets in about all the times we were angry with him... thinking he was being a brat, or unreasonable.

We also seeked occupational therapy, we see improvements, then it will just confirm for me that this a real condition, my son has it, and there are real positive steps that can be taken to help children and their parents to enjoy life more and not to struggle so much.

For instance, when he is excited, he will run and "crash" or bear hug and do touch other people he don't even know. I don't know how many times I told him to stop, or explain to him that it is inappropriate to do this, he does this anyway. He is also constantly touching others faces. I try to explain to him personal space, but it is as if he "forgets" or doesn't get it.

I know that my son is not being naughty or malicious, I have sensed for a long time that he is just not in control of his body and can't help his actions. He exhausts me with his endless energy. I struggle with how to discipline him - if this is not his fault, he needs extra empathy, compassion and patience which I find hard when he testing me to my limits. Also, I believe it is important to still be strict and discipline him like any other child who steps out of line to help him learn what is and what isn't appropriate behaviour.

My son cannot wear jeans or anything that isn't very soft and smooth. At times even sitting on the couch seems to be unbearable without a soft blanket under him. He also fluctuates from day to day, sometimes he is bouncing off the walls and can't get enough stimulus and other days buckling his seatbelt is hard for him to do and he's scared to touch anything. Sometimes raindrops falling on his skin seem to hurt him and birds chirping are too loud. He has some seeing problems too which is the hardest for me to understand, but I try.

He is hypersensitive to touch. Sound, every little noise drives him mad, smells everything and will not taste new food. He lives on breakfast cereal, bread, chicken nuggets.

He hates new situations and will go into himself if he is not happy with things. He's addicted to the tv and computer games but we have recently limited this activity as it appears to make him more aggressive, more hyper and less able to deal with frustrations at attempting to do things.

I am sure parents dealing with SPD children know exactly what I am talking about... People out in public would stare at me like why are you letting your li'l boy to roam around running. Ohh!!!... if they only knew. Sometimes I also feel tired of explaining to other regarding my son differences from the other but still in my heart I know I should be very strong for my son.

Believe me, there are people who can still understand without any explanation, but still there are some that despite of explaining , they could hardly understand...But I leave it that way...what matters most is my son. Children with SPD needs to receive our utmost love and understanding.
I believe SPD is real and my hope is that it is recognized sooner rather than later and people become more understanding and empathetic to the children and the parents of these children. Child rearing is difficult enough, without SPD thrown into the mix.

Right now, Rallione's school is very supportive and understanding and needless to say we have tried punishments, incentives, talking through with him how other children feel etc. Because he is very smart, appears to have no unusual 'symptoms', seems to be just another high spirited normal 7 year old, most people would probably say there is nothing wrong with him but having been around him 24/7 the last 7 years, I sense that if he is to be successful then these extra sensory needs need to be addressed before they cause real problems.

I am not a professional in this field, but I feel in my heart that someday we will see light at the end of the tunnel.

1 comments:

Hartley said...

Hi!

I too have a son with SPD and have joined SPD Bloggers through a network on my blog -- I would love to have you join! Please also look at the Fundraiser I am hosting for the SPD Foundation -- I need families with SPD kids that are willing to share their story!

I look forward to hearing from you,
Hartley
Author of This is Gabriel Making Sense of School
www.hartleysboys.com