sábado, 19 de octubre de 2013

My special daughter Livia...

My daughter Livia and her ASD.

History : 

My daughter Livia is born on 26/03/2011 at 11 o clock at night. 
At 39 weeks I broke my water and went to the hospital. They decided to keep me there and if the contractions didn´t come naturally, then they would induce me the next day.
That evening around 6 o clock  I started to get contractions naturally. My friend called me to see if it was still ok to come on a visit. I said ´yeah ofcourse!! i just am in a little pain every now and then, but dont worry , it still can take hours!! ´.
As soon as my friend stepped foot in the room I started to have heavy contractions.. Ow God I will never forget her face!! And Machteld, I am forever thankful you were there to support me!! Shayne was just home to get a shower and all when my contractions started. The nurse told me not to call him yet , because with the drugs they gave me , she says, I wouldn´t want him around me anyway. But as stubborn as I am, I decided to call him anyway as who was she to decide if I wanted him there or not! Afterwards, Thank God i was so stubborn, because at the very moment he came in , they wheeled me out to the delivery room for a very needed epidural as everything went so fast, to deliver my little babygirl only a short while later! 
The moment of birth itself was quite stressfull as the midwife told me I had to deliver her straight away because of problems with her heart rate. 

My little Budha ( 3900 gram) in the Incubator.
When Livia was put on to my chest we noticed that she wanted to cry , but she couldn´t . She made the faces but not the sounds.. They took her away from me and after a very short while, they wheeled her out to the Neonatal Intensive Care Unit to do tests on her. The nurses and midwifes didn´t tell us anything and they kept us waiting for more then 2 hours before I was actually wheeled down to see her myself.

It turned out that she was on the verge of Pneumonia but they caught it right on time. She also had high levels of some sort of whatever in the blood ( sorry I cant remember all those doctor terms) so she needed to stay.

Eventually she stayed in the hospital for 6 days when we were allowed to take her home where she belonged!

Livia always to find in a good mood!!
Overtime she was a very happy normal baby.
That all changed after about 18 months when I noticed she didn´t really meet her milestones and also was very detached ( no eye contact etc) and in her own little world.
I kept this to myself as I didn´t want to stir things up. Maybe this was just a phase in her little life.
But it wasn´t a phase and slowly but surely I got Shayne convinced it was more than that. In this time we also moved to Spain and the girls went to daycare for the first time in their lives. 
At daycare they confirmed my thoughts with saying that Livia needs to be checked out by a psychologist at the special children center here in Catalunya.

So we had a couple of therapy sessions with Livia and there was the diagnosis: Livia had Autism. Diagnosed at 2 years of age.

Autism explained in a nutshell: 

Autism (also commonly known as Autism Spectrum Disorder or simply ASD) is a neurological disorder that affects communication, motor skills, social interaction, behavior, and more. Neurological disorders are in relation to the nerves or the nervous system. But autism is also in relation to the brain. Autism can include intellectual challenge or mental retardation but studies have proven that many people with autism are not less intelligent, but rather they are unable to express themselves. Its defined as a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills.

The word "autism," which has been in use for about 100 years, comes from the Greek word "autos," meaning "self." The term describes conditions in which a person is removed from social interaction -- hence, an isolated self.
 ( Of course there is a lot more to it, as every child with Autism is so differently affected.There is no way you just can explain it in a ´nutshell´, but you can understand that I didnt want to make this blog any longer than it already is. )

Livia the happy girl : 

Livia is by far the most happy and content girl I ever saw! I know maybe its mothers pride , but hey with a girl like that , Yes I am Damn proud!!!
I always call her my little cherub as you can see in the pictures , she has those cute rosy cheeks ,as she is always smiling and just overall very happy and easygoing.  Livia is non-verbal till now, and it doesnt look like she will talk anytime soon. She does brabbles a bit but nothing understandable
(tatata..dadada). She is mostly in her own little world walking rounds in the house and ´plays´. I put that into brackets as playing for her is not the playing we are used to from kids. They call that Non-functional playing which means that Livia will not use her imagination to play and for example will turn the wheel of a play car round and round instead of driving it on the ground. She can sit ages in front of the washing machine, just watching the cycle and also loves to open and close cupboard doors till the end of time.
She is very sensitive in her touches and food. She loves to feel everything and if she likes the feel of something, she can sit on the floor and rubs it between her fingers for a long time. This is the same with food. She didnt want to eat anything substancial till she was approximetaly 18 months old. She then started with some bread and now she eats only Bread, Pasta and Rice.. and if possible with lots of tomato sauce! I even was very happy when she took a liking to some sweets I gave her the other day, because that was the first time ever!!

Livia is very independent and does basically just what she wants with a big smile on her face. If she wants something from us ( which is in 99.9% of the cases her bottle of milk)  , she just drags us to the kitchen which by that point we know what we have to do.. 

Parents of a child with Autism : 

Ofcourse I only can talk about myself and a bit about my husband regards this topic and how we experience the world of autism and especially the view of the outside world towards ourselves. However I  will not talk about the feelings of my husband in this blog, as I  want to respect his feelings and if he wants to out them to the world like I do, he will do that himself on his terms.

Of course as a parent you are not prepared for a diagnose as ASD. For me I was fairly certain early on that there was something not right with Livia, but I ofcourse didnt know what it was. When we got the Diagnose it was a very double feeling of relief and sadness for me as I ofcourse didn´t want that there is something wrong with my little girl , but on the other side it proved that mother´s instinct is a real thing and now we actually can work with something.

Sometimes just after a Diagnose i feel as a parent you are just a tiny bit relieved that it now has a name and you actually can go forward from there.. However With the Diagnose of Autism I felt in the beginning that way, but now it gets very daunting, especially regarding the reactions of the outside world. 

Because Autism is more diagnosed in this day and age , many people actually think its a made up something, especially because it is not something you can see on the outside. Comments like ´Its just a label you would like to put on your children when they are not behaving the way you want them to do..´ and ´when I was younger these diagnoses didnt exist , the children where just naughty.´  Or even ´maybe she will grow out of it ´.

I heard this kind of reactions and other unthoughtful things and it makes me so sad and angry!  I know I shouldn´t let it get to me, but hey you might not talking directly about my daughter, but actually you just judged my parenting and my daughter!! I really need to learn to build up a shield for such comments, but as I am a very emotional person myself, that is going to be hard work. I want to scream and shout sometimes, but it doesnt make a difference. 

From now on forward:

Of course I dont know what the future has in store for Livia, but we work very hard to make it a positive one. We don´t dwell on the fact that she has Autism and go on with our normal daily lives. 
Playing with the ball with Papa, a huge progress!!
For now she is in Therapy 2 times a week and has a lovely time 5 mornings a week in daycare. She has a lovely teacher/ carer who understands her Autism and does very well in meeting her needs. Even the kids in her class notice that Livia is a bit different than they are and are very gentle with her.
This gives us a very safe and good feeling that she is in good hands.
Also we have a lovely Aupair Lorena who takes a special liking to Livia and also Livia to her. 

I am getting more and more knowledged of how to communicate with her and what there is on the market to help her in her development , so soon I will get more in details and probably will go bit by bit into basic sign language. 
Also buying of sensory toys are on the top of my list.

Next February we will review if she will stay an extra year in daycare or will go to primary school with extra help.

I know this has been a very long blog, but I found it necesarry to write everything down , for my friends and family specially to get a bit of an inside of our daughter and her ASD.

Till Soon Again!!



lunes, 14 de octubre de 2013

71 days... 5 hours...21 minutes and 18 seconds till......

 For now its still Autumn..

Well as far as you can speak from Autumn.. Here in Barcelona the weather is still very nice in October and this week even expected to have temperatures of 27 degrees!!

Its a bit annoying at times as I got all the winter clothes out already for the kids, and now they are walking in half winter/half summer clothes.. Also in this time of year the sniffles and snotters are unavoidable, especially with the school year already in for a month and a bit, the kids get sick aaall the time!! At this moment i also am sniffing like crazy myself..

On a good note, with this lovely weather, we can enjoy some nice walks and playground time without burming ourselves like a month or so ago, when the weather was simply to hot during the daytime.

As you might noticed my Dutch heritance is coming forward here as we Dutchies always like to complain about the weather.. sun or rain, its never good enough!

It is already also over a month ago when i wrote my last blog, I was very busy with basically life and therefor have lots to tell again!!

The kids are now well integrated in their new schools and they love it! 

Sofia is making lots of new friends in primary school and the nice thing of it is that her classmates are all living in the area so when we go to the playground , she meets her new friends there as well!  I on the other hand can still not understand how my little girl grew so hard, not only in age but also in wisdom..

After school she also have twice a week dance class as part of the school activities, and she enjoys it very much. 
This was expected as at home she does nothing else, and she even ( to our dismay) found the gangnam style song on youtube... we hoped we could protect her from that, but unfortunately that failed... What happened with Dora, Peppa Pig and Pocoyo??!! Well they are dancing gangnam style happily with her... grmbl...

After the quite bad experience of the last daycare, finally Livia has a terrific time at her new Daycare ´Can Casamada´ . She is in a little class with a lovely teacher/carer who fully understands her Autism and strange or not even the little ones handle Livia with a sensitivity you wouldnt expect on that age. Because everybody is so gentle with her in class she even now dares to sometimes come close to other kids and sort of play with them in her own special way. Also her Therapist  is to be found in the daycare once every 2 weeks for a full day to check on her developments. She is making good progress and overall is doing great!!


Shayne and myself are as always, busy with the kids and work and ofcourse the hobbies.
Shayne is joining the gym again since a week or two and he is totally loving it, I think especially because the gym includes a sauna and jacuzzi.. he asked me frequently if I see a change in him, but i told him that the jacuzzi won´t make him any thinner...
 (ouch i am such a witch..) But yes he is going to the gym every day during the week and I have to say i see a change in him , maybe not so much on the outside as it is a bit too early for that, but surely he seems a lot fitter and happier in mind..

I am also busy with anything and everything.. still trying to juggle family life with work , study and ofcourse my beloved hobby Crochet. Sometimes I really have to take a step back and reset my priorities. At this moment I decided that my study have to become a bit of a lower priority so I can give more attention to my family. I am honest to say that sometimes I take my family for granted and prioritise my personal goals, and I dont think i should be ashamed , but surely need to reprioritise at this moment.

Nice this last weeks is also that my good friend Tjitske was over from Ireland!
She is Dutch but lives in Cork where I met her about 2 years ago.
As many of you may know, I am not going on a party spree a lot , well say almost never.. but it was time again!! I met Tjitske in an Irish pub in Barcelona for the all Ireland Hurling final and ended up seeing nothing at all of the match ( they lost anyway) and were having fun with some English ´stagnight´lads on the terrace.. eventually I also met my colleague/friend Laura.. To say I started at 4 in the afternoon and ended up at my friends house at 4 in the morning.. They were going further to the club but this oldie (in mind) had enough.. other than that, I am not a drinker, so people where very surprised that I lasted the whole night with 2 Ciders and 1 Coctail..

The next morning I came home, and the first thing Sofia asks me is if i have a headache... I look a bit strange and ofcourse tired and i ask her ´no, why?´  She then responds ´Because of the party mama!!´  I couldnt keep a straight face, but had to have a stern talk with hubby dearest as I am sure she will keep using this against me till she is old enough we can turn the roles around!!
Apart from that I dont want her telling her little toddler friends that mummy has a headache from the party.. i can imagine that that wont make a good impression on us as parents!!

And then in 2,5 months its Christmas again!! I know a bit very  early to write about it, especially in my case as Christmas is not doing much for me personally.
But this year is going to be special as My inlaws will be with us the week before Christmas. We therefor decided that we move our Christmas one week earlier so we can have a full family Christmas party!

When we lived in Ireland we always went to my inlaws for Christmas and this is going to be the first year that they will be with us.. Eventhough it is still early, I am already deciding on presents , food ( no traditional Irish Xmas dinner this time).. and decoration.
I am really really looking forward to it!!