update on the aspergers journey

my plan was to write in this blog weekly about our progress with Mia and the fight for services for her. that hasnt really happened its been a hectic few weeks. although saying that its always hectic. we never really get to be relaxed except for maybe the hour or two once all three munchkins are in bed! we finally got to meet the psychiatirst which Mia has been waiting years to see. he agreed Mia s behaviour and condition is extremely challenging for us but ruled out meds for the time being. we were quite relieved about that. i couldnt get my mind or my heart around medication for my little 8yr old. it just didnt seem the right time. i felt like we had to explore every other avenue before having that conversation. we had agreed the night before the psychiatrist app that we would stick together and be very firm that meds was a no-no. we wanted services not a quick fix. i have friends who's kids are on meds and each to their own. i respect their choice they have their own reasons but im not quite at that place yet. so there we were ready to go in guns blazing determined our opinion was to be counted. after all she is our daughter and we live with her. all they seem to do is read about her for a whole two minutes while they are talking to you about doing a parent course and 'educating yourself on aspergers' dont get me wrong, not all health professionals are this way. this is Our experience over the last five yrs no one elses so i am speaking personally here. 'educate myself' i love when they use that phrase i took their advice at the start. did every autism course you could do. then finally realised i educate my self everyday by living with Mia. we both do. i was uncomfortable going into the appointment. we had mia with us and i was not happy talking about her negatives in front of her. Dan was so determined and focused. he was adamant we would be listened to, 5 yrs of being fobbed off and us saying 'oh ok then' had worn thin and he was ready to fight hard for his daughters needs to be met. i love him more every time we go to these appointments he stands up for Mia and it makes my heart melt.
so there we were fighting gloves on and we were met with the psychiatrist (another new one, the last one had walked out, not enough resources) well straight away i liked him. he was frank and to the point. no bull shit. to any parents of a child with special needs this type of approach is refreshing and much needed. he  agreed Mia had been let down, had missed all chances of early intervention, had received not enough if any adequate services and was not going to write out a pescription like he was being told! result! however this didnt get us any closer to Mia receiving what she needed. he asked what had we done to help Mia and ourselves understand her condition i asked him how long did he have? he laughed as if we couldnt have done that much. by the time we finished telling him it was over an hour later :). the  biggest things wed done were te autism courses, play therapy, social skills training, ot, camps, moved house out to rural location,drive mia to ranalegh every week for cognitive behavioural therapy and got an assisant puppy. we had changed our whole lives including that of our other two children who are along for the ride and constantly have to adjust to Mias needs. i was happy he agreed Mias behaviour was not a reflection on us not doing enough. every parent questions are they doing enough. for any of their children.
he decided to refer us back to autism services and is adamant we receive home support for Mia,and respite for us. the wait? four years? Mia will be nearly 12. ive waited 5 yrs already. so has she. five yrs of missed early intervention, NO OT, NO HOME SUPPORT, NO OFFICAL SUPPORT. NOTHING.  just our hard work as a family. our constant sacrifice to get her where she is today.i came out of that appointment delighted we didnt have to go to medication even though we will hve to except Mia will be on medication by the time she is 11/12 if she does not get the help she so desperately needs. i dont feel its alot to ask for my daughter to have her basic rights met. the health officials have no idea what we live with, the pain we all have to go through, the days sometimes weeks (which has been the case lately) of constant screaming, crying, aggressive outbursts, the emotional affects on her beautiful sister and brother who are now crying with fright at seeing there older sister in an angry haze on a war path. they dont see us crying to each othe for help.  i do  question what kind of people are running the health service for children like Mia. we are great parents. i feel i was born to be a mother but even at that i am not a trained psychologist, nurse, occupational therapist, play therapist, mental health worker, or an Aspergers or adhd expert. But daily i have to try be all these things for Mia to get through her bad days. its starting to  have physical affects on me, im exhausted, emotional and tired of being left of  no support from the people that are meant to be helping our daughter. we have our family and each other with out that i dont know how we would get through.i have an amazing group of friends here that know what i mean when i say 'its one of those days' there kids have what mia has. im so stressed ive even got bowel spasms the last four days. I ADORE MY DAUGHTER and MY OTHER TWO CHILDREN but feel like i fight a war every day that no one else can see.  we are a strong family who adore each other and will continue to fight for Mias world to be made easier for her. i have drawn up some anger steps to help her and have made sure ava and jack are getting one one one time with us each, they are amazing to her and i am so proud to call them all OUR children. Mia is amazing and she has more positives then negatives but if the system keep failing children like her it will be an even bigger  responsibility for families like us to do the work we are still trying to learn about day by day. i am to frightened to even think of Mia as a teenager. it has to be one day at a time.