Time for a new plan!

It's time for a new plan. Superman did very well at the dinner that my BIL hosted. I could see him trying to hold it together during dinner. All those aspects of a simple family meal hammer away at his senses and he was constantly trying to block them out. Talking to his food, making constant noise with his mouth or his cutlery, moving his feet the entire time...to someone who's not aware of what SID is, it would appear that he has bad table manners, or maybe he can't sit still. But for Superman, his brain can't filter out various smells and sounds. So he tries to mask them himself with his own sounds and actions.

Everything went well until it was time to go. We were two steps away from the front door and he had a huge melt down. Normally, he can't be touched during moments like these because his brain registers that touch as being painful and he goes into fight or flight mode. But I knew, if I could just get him out the door, he would be fine. He needed me to do what his body couldn't do for himself. So I picked him up, took two steps out the front door and held him in a bear hug on my lap.

A bear hug is when you are behind a child and you take their arms in yours and wrap them around their body and hold them firmly. For children with SID this can be very soothing because it's a form of deep pressure which stimulates the brain.

Superman took a big breath in and instantly calmed down. So he sat on the front steps and looked for constellations while I packed up our things.

I knew that coming home past his bedtime was a recipe for disaster the next day and said as much to my husband. Sure enough, Monday morning was a disaster. He couldn't regulate himself and his EA, who normally can talk him down, was at a loss. Finally, his anxiety got the better of him and he threw up. They called me at 11am to come and pick him up. Poor little guy.

I'm now officially putting into a motion a new household rule. Any time we have to go out on a school night, we must be home by 6pm which gives Superman 90 mins to go through his normal nighttime routine and be in bed on time.

If parents don't advocate for their children, no one else will and we MUST be the ones to stand up for them and what we feel is in their best interest because they don't always have a voice. Sometimes it's hard to go against the grain. People who don't have much knowledge will feel that you're labelling your child but what they don't realize is that "label" is a title that gives you access into some amazing programs which will allow your child to reach his or her full potential.

Don't ever let anyone talk you out of going with your gut. Any time I have, I have been very very regretful.

The good news is that since Superman got an EA and has pull-out support, he's consistently having good days. I'm still anxious in the morning fearing a phone call, but that's only happened once since the EA was brought in and that was because he was sick. So that's great news!

It's going to be one of those days

Someone stop me before I stick a fork in my eye! The kids woke up at 5:15am and I got very little sleep because Ladybug is obviously training for a breastfeeding marathon (do you need to sport spandex for that? Hmm...I wonder). The kids believe that once the sun is up, they should be too. That theory works well in winter, not so much in Spring.

Superman is a formula child. In order to cope everyday with the challenges he faces, he needs to stick to routine. So he goes to bed and wakes up at the exact same time every day. If that changes by even 15 mins, all hell breaks lost. So today he was up 2 hours earlier than usual. (This is the part where I debate the fork action) and we have a dinner to go to tonight with my in laws.

This is not starting out well. To have a bunch of people in a small space is very overwhelming for him. All of the smells of the food, the chatter of voices, clatter of silverware, the motion of passing dishes....with Superman's form of SID, he can't filter out the different sounds and smells so he experiences all of it all at once and it throws his brain into a tailspin.

Given that he's 7 he doesn't do naps. But I think a little quiet time in bed will be in order. For those of us who's sensory input/output is normal, we take so many things for granted. Superman spends his days just trying to cope.

Two steps back and one step forward

It's been awhile since I've had a chance to write. When my FIL passed away, my days became a blur.

Following the funeral, we went away for a week because Superman was off school. So we rented a cottage and headed north. What great timing for a getaway! It took us a few days to unwind but eventually I stopped "doing" and just started "being." My kids followed my lead and the transformation I saw in Superman was amazing.

He had a rough go of it when he lost his Grandpa. His little body couldn't process his own feelings let alone the feelings of everyone around him and he had a lot of meltdowns. Sometimes it felt like he was becoming a verbal punching bag from people who didn't understand his issues.

We finally got the official report from the Occupational Therapist last week. We all have seven senses and for the "normal" person they all work hand in hand with each other and allow us to function in a proper and efficient way. For Superman, only two of those senses work properly. The other five have severe defeciences. That basically stops him from being able to act appropriately in just about every situation. When do you NOT use your senses?

Now that the school has some concrete proof as to what some of his issues are, we can move forward. Every day that he has a rough time, it is a blow to his self esteem. Every morning he sets out to make it a "10 billion day" (why just go for 10! He aims high!) and if that doesn't happen and his brain puts him in positions he can't control, he is devastated.

Today was a 10 billion day. A teacher stopped me in the hall to say how amazing he was. She has no idea how that affected me. To finally have someone say "Yanno what. He's a good kid." Usually what I hear is my phone ringing saying "He's not coping well, please come and pick him up."

I think its a good life lesson to tell anyone in our life that how much we appreciate their efforts instead of saving our words for criticism.

Sometimes black and white is best

Superman was on the phone the other night with my Dad. He hasn't been sharing a lot lately about how he feels since his Grandpa passed away. But when my Dad called him, he seemed to let it pour out. He said "I have some sad news. Grandpa J passed away. Sometimes I feel sad, but there are a lot of people who are still living that love me."

Kids tend to see things in black and white. They haven't travelled enough miles in life to start adding in shades of grey. The parts where things get confusing and you constantly doubt yourself. It's in times like these that I need that black and white perspective. Someone died, and it's sad. It's incredibly sad and it's okay to feel sad. But there are a lot of people who are still living that love you. It's okay to be happy and to move forward and to remember the good parts of the person that you will miss. Today I learned a life lesson from a 7 year old.

Wouldn't life be simpler if we could all tap into that black and white side from time to time?

How a life unravels

The past few days since my FIL "B" passed away have been tough. A constant battle between humour and sadness. Watching as the people who loved him most, pick up the pieces of what is left of the life that he lived. Sorting through papers. Smiling at photos. Remembering stories. Clinging to memories. Making sense of a loss and finding it's place in their day to day life.

Today, I had a moment where I felt like I couldn't breathe. I watched as Superman unravelled...mad at the world. Mad at his Grandpa. Mad at me. All of these big emotions bubbling up in a little body and not having the worldy experience of knowing what to do with them. So he lashes out at the people that he knows won't lash out back at him. He screams, hits, yells, until he's reduced to nothing but heaving sobs. He clings to me like I'm his lifeline. And we rock. And we sing. And we cry.

And the love goes around

Today is my birthday, and my hubby D's birthday as well. I'll always be 5 years younger though *bwahaha* It's a bittersweet day for us though. D's Father passed early this morning. He had a stroke yesterday and he's had several health issues the past few years so it was just one more fight that his body was tired of fighting. This will make every future birthday for us, bittersweet. The one wish I had was that my FIL not pass on my husband's birthday.

We told Superman about it when he woke up. He took it rather well but I suspect it will hit him in a few days. Most likely in ways we wouldn't expect. I am sad at the thought of Ladybug not knowing her Grandpa.

We spent yesterday evening at the hospital so we could say what we figured would be our final goodbyes. The kids couldn't go in the room due to a high infection rate, but Superman called out his I love you's from the hallway which was sad but sweet.

My heart is breaking for D. Although no one in the family was surprised at the passing, it's still his Dad. But D carries on the great traits of his father. Being a hands on guy and involving the kids in his building, his creativity, the outdoors. Some of his best memories with his father he's doing with his own kids and I couldn't be prouder of the man that I married.

We were all sitting on the bed this AM and one of our cats came to visit us. Superman said "See? And the love goes around." Pretty profound for a 7 year old.

Peace be the journey Dad. We love you. xxoo

This is me in all my beauty and with all my faults

This is me, in all my beauty and with all my faults....I love that line. I think it sums up what it is to be a mother, a woman, a partner. All the complex parts that make us whole.

I'm a 30 y.o, married Mum of two. My husband D, is my best friend and soulmate. My little guy "Superman" is 7. My daughter "ladybug" is 10 mos old.

I decided to start a blog so that I could document my journey as a mother of a special needs child. Superman is my 4 ft tall hero. He's a trooper, a little guy who keeps on truckin' no matter what is thrown at him.

So far, he's been identified as having Sensory Integration Dysfunction (SID). Basically every message that his brain receives from his senses isn't received the right way, which means the message that his brain sends back is incorrect and causes him to act inappropriately. Every single day is a struggle for him.

Superman falls somewhere on the autistic spectrum. Not sure where, but we'll get our answers in a couple of weeks when he has his assessment at the hospital.

I never know what the day will bring. Some days he wakes up the happiest boy in the world. Other days, everything sets him off. People are quick to judge. He's 7, why would he have a tantrum? You need to discipline him more, you need to teach him that the world doesn't revolve around him, you need to show him who's boss.... Boy, they couldn't be more wrong. He has a neurological disorder. Basically, they're asking him to override his brain. How on earth is that a reasonable request of a child? Or of anyone for that matter?