Go Away!

Today the kids and I had lunch at my inlaws house. Sebastian was in a bad mood and kept grunting at anyone who disturbed him while he was eating. In an attempt to get Sebasatian to verbalise his discontent we were encouraging him to say"go away". Sebastian mimicked the words with litle enthusiasm however Marcus on the other hand expressed this phrase with great enthusiam. He was so cute that we couldn't help but giggle and of course this lead to him repeating the words over and over again, causing us to laugh even harder. I knew that I would suffer the consequences of our collective actions and it was only 1 hour later when we were at the video shop and he walked away from me chanting "go away, go away, go away" Oh the joys!!

Sleep deprived

I got very little sleep last night because Marcus wouldn't sleep. So much for sleeping through! It's so hard for me to be patient when I'm sleep deprived.I tried to keep my cool but I was unsuccessful. Lets hope we get a good nights sleep tonight.

What I'm thankful for...

Sometimes life can get so busy and stressful that it's easy to get bogged down by all the things that are going wrong. At the present time, with Sebastian being sick again it's easy to feel down in the dumps.
What keeps me going? The idea that things will get better. We will get Sebastian's seizures under control for good. Sebastian and Marcus will grow up and not be so dependent on me every second of the day. Sebastian will learn to entertain himself and Marcus will not be a mini cyclone forever. It will get better!!!

I also tell myself that things can be worse. I'm reminded of this when we go to the children's hospital and I see other children struggling to overcome so much more.

We have two very different but dynamic and lovable children. We have family who do their best to support us through our hardships. When I think about it we have a lot to be thankful for. There is one more reason to smile.... Marcus is sleeping through the night after 18 months. Now that's something to be thankful for!!!!

A strange day

The day began with Sebastian, Marcus and I going to Early Intervention playgroup at Lifestart. It's normally a really busy and noisy play group as there are lots of kids with varying dissabilities and alot of new commers who appear to have autism. Today, Marcus my child without the disabiliy was the worst behaved of them all. He seems to be getting his moulers and was he cranky today. He threw a full tantrum today during circle time and had to be removed from the group. What a spirited little boy! The strange thing is that he was an angel yesterday.

After group I took the boys shopping. It was strange because today for the first time I witnessed so many people staring at Sebastian as if there was something wrong with him. I really have never observed such negative stares from strangers before. I'm a pretty positive person and always give people the benefit of the doubt. Even when people make offensive or politically incorrect comments to me about Sebastian I let it go , knowing that they mean well whilst aiming to educate them in a positive way. But today I just wanted to tell people to fuck off. I think this is the first time I have felt this way in the past 4 years.

Despite the negative behaviours of some today. The girl that works in General Pants danced with Sebastian for 15 minutes while I shopped around. He had her spinning and dropping to the ground and holding hands with him. What can I say he has a way with women 18-25 years old!

abc...

Sebastian knows the alphabet..yeah!!! I'm so excited because I thought it would take me forever to teach it to him but what do you know, he learnt it from a brainy baby DVD. Who said TV was bad for children?

Marcus can say abc but thats as far as it goes. He was so cute today trying to count his fingers but he was getting frustrated because he can only say the number 2 and he was shitty that he wasn't getting very far. He was happy when I stepped in to help.

He also got his very first Thomas train set today and he was such a happy boy. Choo Choo!

Today was a good day!

A Sad Day

Today I spent most of the day at the Children's Hospital. This morning Sebastian wasn't himself and was having several episodes of eye rolling. I decided to take him straight to emergency to get to the bottom of what was going on. After a long wait the registrar witnessed some of his seizures and decided to increase his medication to the full amount over 3 weeks. This is so upsetting because we have been weening him off this medication for 6 months and we were almost done. Now we are back to square one. The scariest thing is that this medication may not work and if that's the case we will have to go through all the trials of medication with bad side effects that don't do anything to stop the seizures. This has been a bad year for us but as I said to Diego, it can only get better!

On a positive note Sebastian mimicked every letter in the alphabet (except the letter T) after the brainy baby DVD. How exciting that he is learning the alphabet. I thought it would never happen!

Today started off as a glorious morning. Sebastian walked into our room this morning saying "mum"
I responded with "hello are you hungry"
He says "yes"in a perfect high pitched voice.
Then he says" Hi, How are you?"
This was like music to my ears. Every morning I ask him how he is and this morning he beat me to it speaking the words without any prompting and as clear as day for the first time.

Unfortunately the day is only half way through and I have received some bad news. Sebastian has a history of seizureis but hasn't had a full blown seizure since he was nine months old. We have had some concerns about his eyes rolling back and I just found out his EEG showed some abnormal activity on the right side of his brain. The frustrating part is his neurologist is on holidays and I don't know what to do. The registra at the hospital wasn't much help so now I'm extremely anxious and feel sick in the stomach. I told you our lives were like a roller coaster!!

My first Blog

Hello, My name is Sabrina and I'm a mother of 2 boys. Sebastian is 4 years old and Marcus is 18 months. Life is pretty chaotic when your a mother of two, but when you throw Down Syndrome in the mix it's like riding a massive roller coaster. My life is full of these really amazing moments yet there are some days when I feel so overwhelmed by the challenges that I face.

I have decided to delve into the unfamiliar world of blogging for 2 reasons. Firstly as a way of documenting my life with my family and secondly to connect with other parents who are going through similar experiences as me. It can be a very lonely life as a stay at home mum, particularly when your child has additional needs. I myself have found it useful reading other people blogs so I thought that i would give it a go.