Tuesday, June 29, 2010

Wish I could have a magic wand

Believe it or not, Rallione has improved markedly once he started going to preparatory! The changes in the last year have been factors better! We were afraid to "unleash" him on his unsuspecting teacher, but Teacher Liza is a tough cookie, and she's handling him great. I was even contemplating home schooling because I thought, regular school will be a disaster!!

I'll never forget how his teacher had never heard of SPD before, and we were like, "here we go!!!" But it's amazing how things work out. I think having my son in an environment all day long where he can see how other kids act has been HUGELY good for him. His school work is great. He's had some behavior issues - he doesn't understand other people's space, etc., but his "red marks" at school are consistent -- we are working on those.

Rallione is now in first grade and he seemed OK for the first few days, but then they switched teachers on him and now his symptoms are all back. He complained about the loud sound cause by his lot of classmates, he refuses completely to wear socks.He also complaining about the longer hour of sitting in school.

The teacher and principal and the whole staff of the school are being unbelievable supportive, but it's so stressful! I'm so stressed out I can hardly sleep or eat and every time the teacher calls my attention, I jump a foot in the air for fear that he's gone into a meltdown again.

With three kids, managing his symptoms and being an advocate for his in school has been very hard. We are doing everything we can for him because we love him so much and he's the most wonderful child when he's not all freaked out about his sensory issues, but I just wish I could wave a magic wand and make it all turn normal.

How do I deal with my son issues and behaviors

I have only learned this through searching and reading but i found it effective at times...

Make sure to give them lots of huggs....it reduces their stress with a low tone of voice and the pressure releases endorphins from their joints and they will calm down... know that it is not their fault...their senses are out of wack....when they are sitting on your lap, rub their head, run your hands up and down their legs with softness almost tickling...do not push them on their eating habits, don't rush them into events, talk softly and explain what is going to happen...get them into physical. Also swinging is sooo important.... swing them and sing to them on the swing at least 30 minutes a day!!! god bless

Monday, June 28, 2010

If they only knew

Allow me to introduce you to my son:

*From the moment he was born, he wouldn’t stop crying (it took him three hours to fall asleep after his birth)
*The pacifier became his best friend until 3 years old and he never found any replacement afterwards to help him soothe himself
*I would literally spend hours gently shaking him in my arms until he fell asleep
*He startled with every noise he heard
*He would only wear “soft clothes”, no jeans or “itchy shirts”… stretch pants and cotton shirts were the staples
*Daily anxiety about the unknown/unpredictable
*Excessively ticklish
*Continues to cover his ears with loud sounds

Being my youngest child, I initially thought this was “normal”. As I became worn out by all of his emotional needs and saw his “behaviors” being “different” than other children his age, I started my quest to find out why!

Every time we attempted to discuss our concerns with his pediatrician we would only hear “that is completely normal for hisage, he’ll grow out of it, it’s only a phase…”

No one seemed to understand our son or our struggles as parents. It always seemed to come down to blaming us for being too accommodating to him…it was OUR fault. They would say, “too bad, he should just get over it!!”

There were so many misunderstandings, arguments, and judgments from family, friends, , preschools, teachers and professionals. Our frustration was increasing every day and my patience was wearing thin!

I have learned so much through educating myself, seeking professional help, doing research, specializing in this field.

Sensory Processing Disorder is a real neurological disorder, yet still so often misunderstood. It can have a huge impact on a child’s well-being, daily functioning, social skills, relationships and self-esteem.

Having a child with a Sensory Processing Disorder can also completely exhaust parents and professionals if they are not educated on the disorder (and sometimes even if they are!).

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.

What is Sensory processing disorder

Sensory processing refers to how we experience our surroundings. How we take in information through our senses (touch, movement, smell, taste, vision, and hearing), organize and interpret that information, and make a meaningful and appropriate response.

Most people process information about their surroundings without even thinking about it. Lights may be glaringly bright, but we squint and ignore them. A room full of noisy people may make conversation difficult, but we talk louder and listen harder. Most of us never notice if our sock has a wrinkle in it, or care if our food is lumpy. But for people with sensory processing disorders, these situations bombard their senses, feeling more like an attack than a nuisance.

Sensory processing issues can make it difficult for children to concentrate, and may be misinterpreted as signs of ADD. Their seeming "over-reaction" to sensory input can also be misinterpreted as behavioral issues.

When a child is unable to cope with typical daily doses of noise, fluorescent lights, scratchy tags, food textures, and jostling crowds - parents may seek help from Occupational Therapists (OT's) that are trained in sensory processing issues. Therapy can reduce the child's anxiety and help them cope with and minimize their sensitivities.

At the opposite end of sensory processing issues, there are also children who seem oblivious to their senses. They seem to feel no pain and fear nothing. They may love rough-housing, and try to get other children to wrestle with them, not realizing that others don't enjoy it.
They may be spinners or rockers, and often love spicy or sour foods. Therapy can help these children to be more aware of their senses, help them moderate their behavior, and help their families provide a daily "sensory diet" rich in sensory experiences.

Blog Transformation (Sensory Processing Disorder)

Sorry it has been a long time! It takes me so long before I decided to share with you my struggle being a mother of SPD kid. Starting now I will join you in my journey in finding the hope and strength needed to get through raising my li'l boy Rallione, as a "mother of potentially gifted child with SPD".

I am now a stay-at-home mom trying to manage life with a "bumper and crasher" I'll share our journey, good and bad, as well as what we do and what we've tried to manage this disorder. We've learned so much together and I've learned so much from being her mom. I share about what therapies we have had and are currently having, what I've found works (or doesn't work) for us, information about special needs and how to be an advocate for your child. Here you will find all the latest updates, changes, new information, news about Giftedness, SPD and personal comments/questions.