Today was supposed to be house cleaning day but the boys were full of the bounces and couldn't seem to settle. So we all bundled up warm and decided to have fun out in the garden.
We have a trampoline outside as well as a long garden for running around in. I completely recommend getting a trampoline to any and everyone! Even if all you have room for is one of those indoor kiddi bounce things, especially for those of us with special kiddos.
After an hour bouncing around, digging up the wood chips and putting them in black bin bags, then helping daddy dig up and move the paving slabs both boys were calm and happy to sit watching Guardians of the Galaxy with cold hot chocolate - R hates hot drinks but loves hot chocolate hence the cold hot chocolate lol.
Mummy fell asleep as per my own medical issues, so missed all the movie 😲😟 and I LOVE that film. R loves Drax as he feels that Drax is just like him - very literal! Honest watch the film and in the prison break he says metaphors do not go over his head as his reflexes are so fast he would catch them 😀 That there is our R down to a tee.
Now R is upstairs playing in his room and H is sat with daddy playing on his leapfrog Leap Pad. All is quiet and calm - for how long is anyone's guess but we enjoy it whenever it arrives in our house. This allows me time to look at the pet rehoming centres and sigh longingly at them.
Hopefully by the end of the year we can afford a dog, I know they are expensive but oh so loving. The biggest benefit would be to R, as well as H of course. Pets can have a huge huge effect on special kiddos that far out weighs the cost. Pets can teach kids about social skills, love and how to care for something or someone who can't do it without you around.
Hoping tomorrow goes just as well, as they have birthday parties to attend! 😮
Saturday 6 February 2016
Friday 5 February 2016
Medical professionals....
Right, so doctors - both in hospital and medical centres (GPs) - have been a huge part of our lives since R arrived in 2009. Some have been absolutely fantastic and I have hated to leave them behind when we had to move house; others I have hated how they made us feel like we were making things up and that we didn't know our son!
7 years later and we still encounter this when our usual consultant isn't free to see us or has moved onto hospitals new. For me it's the constant repeating of everything that's on his file - from my pregnancy to each and every fit. His behaviour, his meds and even his poop cycle! 😲
Once you can get past that little hurdle, usually the path smooths out and you finally feel like some forward motion is achieved. Sometimes it's a false feeling, as sometimes even experts in their fields, just don't know what's happening or what will happen. It's all a learning curve for all of us - R, me and his dad, his little brother, his grandparents and even his doctors.
If you are feeling lost or alone - you, my friend, are not alone! All parents feel like this, and sometimes for us who have a child or children with any extra need, it can feel like we ALWAYS feel like this.
Does it get easier?
I'm still waiting to be honest. Life can be difficult with R alone but add that to an active 3 year old, a daddy who works full time and a mummy with her own medical needs = a controlled chaos 99% of the time. The missing 1%?
That's when the kids are asleep! Lol
7 years later and we still encounter this when our usual consultant isn't free to see us or has moved onto hospitals new. For me it's the constant repeating of everything that's on his file - from my pregnancy to each and every fit. His behaviour, his meds and even his poop cycle! 😲
Once you can get past that little hurdle, usually the path smooths out and you finally feel like some forward motion is achieved. Sometimes it's a false feeling, as sometimes even experts in their fields, just don't know what's happening or what will happen. It's all a learning curve for all of us - R, me and his dad, his little brother, his grandparents and even his doctors.
If you are feeling lost or alone - you, my friend, are not alone! All parents feel like this, and sometimes for us who have a child or children with any extra need, it can feel like we ALWAYS feel like this.
Does it get easier?
I'm still waiting to be honest. Life can be difficult with R alone but add that to an active 3 year old, a daddy who works full time and a mummy with her own medical needs = a controlled chaos 99% of the time. The missing 1%?
That's when the kids are asleep! Lol
Thursday 4 February 2016
At the beginning......
I have spent many hours trying to figure out how to start this blog and why I even wanted to start a blog, when it started out as a book! I finally realised that, what we dealt with everyday and how we dealt with these things couldn't really fit into a book yet because how can you write a book about parenting a complex needs kiddo if you haven't finished being a parent to begin with?
Answer: you can't!
So I decided to start from the beginning, not the beginning in as much as when we first noticed anything was different but the beginning from when we first thought we were pregnant. I know, why? Well, its because as a parent to someone with complex needs, you spend a lot (and I mean A LOT) of time blaming yourself and what YOU did or didn't do to cause this to happen to your child or children.
I felt that I was to blame for R's issues because I had used jacuzzis whilst in the first few weeks before I knew I was pregnant, because I had a few drinks during the pregnancy and because he was born early due to MY body failing him.
All sounds ridiculous right? Yup, even writing it, it sounds silly! :-) But there isn't anything right or wrong about what we blame ourselves for as parents or even logical to be honest. It wasn't my fault I didn't know I was pregnant at only 2 weeks gestation, it wasn't my fault I ended up with pre eclampsia at 33 weeks gestation causing me to be induced at 35 weeks. The drinking - well I had 3 glasses of wine over the whole time, so not exactly a large amount and to be honest most of that was before I even knew I was pregnant!
He came out screaming, this tiny and skinny baby. when I first saw him I fell in love with another male, this one just hours old. This one was definitely more lazy than the first man I fell in love with, my husband, because he didn't want to poop and need up to neonatal for 2 weeks before he came home.
He seemed to progress fine if a little slowly, then at 10 months old cam a horror I wish no one ever has to experience EVER!!! My little boy had a fit - I didn't know that at the time as it didn't look how I had been told fit would look like or how I imagined it to be. After a week back in hospital, we were told it had been a Febrile Convulsion - yup sounds weird right?
Well its temperature related seizures or fits. These continued every 3-6 months until he was almost 3 years old. By this time we knew he was behind on speech and noticed other little things different between him and his peers. The consultants then stated he had A-typical Febrile Convulsions - meaning there weren't normal - so they put him on Sodium volporate, an epilepsy drug. For the first time since that first fit my little boy was fit free! As he grew the dose changed to cover break through fits, these due to his height and weight changes.
Now he's 7 years old with no fits, he's still on sodium volporate as his Febrile Convulsions turned into Temperature Related Epilepsy (this due to scars on his white matter, it is not typical for children with febrile convulsions!).
He has finally been diagnosed with several issues which cause him and us to struggle each and every day, which this blog is based on, but he is still a happy, full of beans, loving little boy. All he wants is to have fun, laugh and hug. His diagnoses are: ASD (Autistic Spectrum Disorder), SPD (Sensory Processing Disorder), SCD (Social Communication Disorder), partial 3rd nerve palsy, no 3D vision, Epilepsy, and Chromosome 14q deletion (although we are all unsure how this will affect R in the future).
Answer: you can't!
So I decided to start from the beginning, not the beginning in as much as when we first noticed anything was different but the beginning from when we first thought we were pregnant. I know, why? Well, its because as a parent to someone with complex needs, you spend a lot (and I mean A LOT) of time blaming yourself and what YOU did or didn't do to cause this to happen to your child or children.
I felt that I was to blame for R's issues because I had used jacuzzis whilst in the first few weeks before I knew I was pregnant, because I had a few drinks during the pregnancy and because he was born early due to MY body failing him.
All sounds ridiculous right? Yup, even writing it, it sounds silly! :-) But there isn't anything right or wrong about what we blame ourselves for as parents or even logical to be honest. It wasn't my fault I didn't know I was pregnant at only 2 weeks gestation, it wasn't my fault I ended up with pre eclampsia at 33 weeks gestation causing me to be induced at 35 weeks. The drinking - well I had 3 glasses of wine over the whole time, so not exactly a large amount and to be honest most of that was before I even knew I was pregnant!
He came out screaming, this tiny and skinny baby. when I first saw him I fell in love with another male, this one just hours old. This one was definitely more lazy than the first man I fell in love with, my husband, because he didn't want to poop and need up to neonatal for 2 weeks before he came home.
He seemed to progress fine if a little slowly, then at 10 months old cam a horror I wish no one ever has to experience EVER!!! My little boy had a fit - I didn't know that at the time as it didn't look how I had been told fit would look like or how I imagined it to be. After a week back in hospital, we were told it had been a Febrile Convulsion - yup sounds weird right?
Well its temperature related seizures or fits. These continued every 3-6 months until he was almost 3 years old. By this time we knew he was behind on speech and noticed other little things different between him and his peers. The consultants then stated he had A-typical Febrile Convulsions - meaning there weren't normal - so they put him on Sodium volporate, an epilepsy drug. For the first time since that first fit my little boy was fit free! As he grew the dose changed to cover break through fits, these due to his height and weight changes.
Now he's 7 years old with no fits, he's still on sodium volporate as his Febrile Convulsions turned into Temperature Related Epilepsy (this due to scars on his white matter, it is not typical for children with febrile convulsions!).
He has finally been diagnosed with several issues which cause him and us to struggle each and every day, which this blog is based on, but he is still a happy, full of beans, loving little boy. All he wants is to have fun, laugh and hug. His diagnoses are: ASD (Autistic Spectrum Disorder), SPD (Sensory Processing Disorder), SCD (Social Communication Disorder), partial 3rd nerve palsy, no 3D vision, Epilepsy, and Chromosome 14q deletion (although we are all unsure how this will affect R in the future).
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