When it hits you , your alone 💙 UPDATED VERSION TO REVISIT A FEW THINGS 7/7/19
When I wake oscar up in the mornings I’m literally going into the unknown! He may be an angel he may be a wild lion , his bedtime routine is perfect he has a bath or wash around 6 he has teeth brushed a story and no volume on any tv ,he really winds down and to be fair it’s a lovely time he’s the sweetest boy , very cuddly he then has alone book time , he literally pushes you out , he loves books that’s his comfort he has a large organised book storage in the living room literally like a library, he chooses his books sits on his ABC rug , it’s his space , around 630 I show him the bedtime symbol and say Oscar bedtime, he gets two books one under each arm and goes to the baby gate at the bottom of the stairs ready to go to bed , whoever’s home at this time will line up and each kiss him goodnight and tell them they love him, he goes super cuddly and goes to bed no problem, what then Happens is 50/50 he can get very very over excited or he drinks his milk and is asleep within 5 minutes sometimes it takes him 3/4 hours
. THINGS ARE MUCH THE SAME IN THE SLEEP DEPARTMENT! HE IS MEDICATED FOR EPILEPSY AND ANXIETY SO IS UNABLE TO HAVE SLEEP MEDS, AS THEY CAN INCREASE SEIZURES AND FOR ME THATS A BIG NO! I WOULD RATHER HAVE INTERRUPTED SLEEP THAN MORE SEIZURES ANY DAY ,AND IN MY WORLD CURRENTLY BOTH ARE NOT AN OPTION .
On the mornings he has had a late night you never know who will great you , the angel you put down, or a psycho who wants to kill you , literally punch ,headbut ,bite scratch ( kill) once he is upright , totally different story but actually getting up is mostly really bad , it’s not due to lack of planning either , we allow 25 minutes to wake lots of gentle disturbing noise , gentle coaxing , door open walking past , that's usually the signal as to wether he will attack if you open the door and say good morning he immediately screams NO ,if it’s not ok , so you allow a few minutes longer but sometimes 30 minutes goes by and he’s still screaming and going ridged , it’s those mornings you have to just man up and go for it , on Monday this week it was one of those mornings and I took around ten for the team , throat kicked, scissor kicked, head butted everything he really hurt me and you call downstairs for back up but the Hoover is switched on! And you think crap I’m totally completely on my own! Like really alone and from somewhere you just find the skills to deal with it in that moment !
THE ATTACKING ME HAS STOPPED AT THE MOMENT HIS ANXIETY MEDICATION IS KEEPING HIM IN A CURRENT STATE OF OK, SOME DAYS HES STILL NOT COMPLETLEY OK ,BUT I AVOID EYE CONTACT AND WE KEEP BUSY, WE ARE ABLE TO MOULD THE MOOD A BIT BETTER AND PROP IT UP TO AVOID HIM TOTALLY LOOSING CONTROL, ITS STILL HARD WORK AS ITS CONSTANT BUT BEFORE WE WERE DOING THIS WITH NO RESULTS, HIS CONTROL IS COMING I CAN SEE HIM WORKING THROUGH SITUATIONS HE WOULD HAVE LOST IT AT BEFORE, IM PROUD IF HIM FOR THIS .
For the record I don’t usually call for help but I thought I had a nose bleed !
So it’s that moment I know you can all relate wether you feel the alone feeling as a couple or on your own , it’s a feeling that scares you but empowers you at the same time .
I THINK MY ADVICE AT THIS STAGE FOR ANY PATENT GOING THROUGH DIAGNOSIS IS WHATEVER SUPPORT YOU ARE OFFERED SAY YES, ATTEND THE GROUPS, YOU MEET PEOPLE, YOU NEED THISE PEOPLE THEY ARE YOUR ARMY, REMEMBER EVERYONE HAS SOMETHING TO BRING TO THE TABLE, EVEN YOU, BE PART OF IT ,FACE TO FACE, ONLINE, CHATROOMS FOR SUPPORT AS ,AT MY DARKEST MOMENTS THE MOST VALUABLE SUPPORTS AND THE MOST VALUABLE INFORMATION HAS BEEN FROM PEOPLE I DONT KNOW, WHO RELATE TO ME, WHO HAVE BEEN ME, FELT ALONE, FELT HELPLESS, AND THEY HAVE PULLED ME OUT OF THAT, AND NOW I HELP OTHERS TOO AND BY DOING SO I HELP MYSELF
THE KEY ELEMENTS FOR ME RETOUCHING THIS BLOG ARE IM FEELING LESS ALONE SUPPORT WISE, IN STARTINGVTO HAVE A BETTER UNDERSTANDING OF JUST HOW DIFFERENT OSCARS MIND WORKS, AND THROUGH UNDERSTANDING I CAN APPLY THAT TO PARENTING, WHICH ISCAR PUCKS UP ON SND FEELS MORE SECURE AND CALMER.
WE HAVE TO ADMIT WE RELY ON MEDICATION TO FUNCTION, IVE BEEN REMINDED A FEW TIMES THAT WITHOUT IT ,OSCAR IS UNBLE TO FUNCTION THIS HAS A KNOCK ON EFFECT TO SCHOOL, SLEEP BEHAVIOUR,, MY ABILITY TO PARENT HIM AS HIS ANXIETY REMOVES MY CONTROL.
THERE ARE NO HEROS IN OUR HOUSE!!!!WE NEED SUPPORT THIS IS FACT, WE NEED OSCAR TO HAVE MEDICATION THIS IS ALSO FACT
I HAVE ACCEPTED THIS NOW AND WE ARE RICHER FOR IT, I HOPE IT CONTINUES
Who’s in your boat ?