Christmas

The time of year that all the kids start to get excited about Santa , the family start to organise who is making this year’s dinner, all the planning, then enjoying the big day.
Presents, family , food fun and games…….

Unless your us.
The time of year we dread so much, the ever changing school routine with assembly’s and plays , parties and Santa visits. Where do I start…

Getting Danny to school is a major job in itself , up from 4am, then not wanting to brush his teeth , refusing to wear those socks because they have wrinkly bits, the trousers are too itchy, the jumper not sitting right and the pants up the bum !!! So after that battle I then have the jacket and shoes battle before I’m even out the door. Now when I say battle I mean all this anxiety starts from the moment he gets up till he leaves ….so.thats a good 4 and a half hours I’ve had arguing, screaming , getting beat up. So yes I’m not really excited about the extra Christmas school activities I’m afraid. As it all just gets added In to the long days as they are already.

The actual* how many sleeps * countdown is far more appealing to Danny as he loves the facts and figures…but he hasn’t actually thought a lot about the big day itself.
Its spent with just the three of us with visitors scheduled in on certain times, so we can manage the anxiety and meltdowns as best as we can, so Danny is not so overwhelmed it gives him the Christmas fear. Then a quiet normal dinner with a few crackers and extras I manage to sneak in.

As for Santa ….Well that man is a hard  man to try and explain to a 6 year old with autism .
Each year has gotten better and he Will open all his gifts now, we keep gifts to a minimum too it’s easier on him. He still does the same though  after they are opened he sits back on the couch and wants to watch tv or play the console…..very rarely he wants to play with the new stuff. Some times  it’s taken over a year for him to open that game from Christmas ! ….but we take the day as it is and we try our best to make it easy for Danny, as simple as possible , as quiet as possible , predictable if we can.

Yes I would love to go to the family that’s hosting the yearly dinner, to be cooked for and spoiled, to sit with my nearest and dearest and share stories and play games and just feel the family love and bond ….sadly it won’t happen but I have to remind myself as hard as the few months leading up to and the big day are,  it’s all about Danny and we certainly have so much more than some people do on Christmas. So for that I’m thankful and grateful for our structured strange Christmas and I’m thankful for such  understanding family and friends .

Merry Christmas to you and yours when it comes xxx

The following 6 years have been the toughest ever, it’s impossible for me to blog about it all , I’m saving that for my first book. I can certainly outline some of it for you just now.

I suddenly entered the world of hospital visits , pediatrian , phsycologist, cdc , Chams , speech and language, just to name a few , the stress was unreal and the fight we had was even worse. Danny had mastered the art of masking , so at playgroup, nursery , school he would put a mask on and hold all the insecurities inside making it look like he was coping only a few teachers actually picked up on his issues and tired to help us the rest were sadly not interested ….As soon as he was free from that environment all hell broke loose. We called him our jekyl and Hyde , constantly walking on egg shells , waiting for his next explosion.  Danny is very aggressive and violent and this is how he expresses his anxiety and fears and misunderstandings , I’ve suffered broken nose ,my jaw being knocked out of line, bruises, cuts, kicking, punching, threats of him killing me with various items too.  At 4 years old he held a knife to my stomach ! Saying he was going to kill me. Over the years I was sent to parent courses galore ! Think the authorities wanted to put some blame on me but no way was that happening.

Finally we were told Danny had PDA pathological demand avoidance …but this couldn’t be officially diagnosed in Scotland as it isn’t recognised here yet. So on his files it’s Autism with PDA traits. Danny also has severe hypermobility which means most days he struggles to walk, he is in constant pain and is exhausted all the time. He has to be monitored when playing so he spent overdo it ….trying to tell a 6 year  old  he cant jump on his tramploine for long etc isnt easy especialy with mental health issues. Danny has also been diagnosed with childhood tics/tourettes which he can and might grow out of. Danny doesn’t sleep well either and thankfully to our community supporting me we managed to fundraise over 2 months and purchase a safety sleeper from the usa to keep him safe during the night when he is awake or having a meltdown.

Thankfully we have a small close family who all understand and are very supportive in keeping myself and my husband going through each day. We are also lucky to have a handful of very close friends who we can also be ourselves around, it makes such a difference when we don’t have to put an act on for people or constantly explain  Danny’s behaviours . Danny is high functioning and very very intelligent so this will hopefully let him be independent as an adult and there is no reason he can’t be very successful in what he wants to do. …but we also are aware this might not be the case and we constantly worry about when we are gone, who will be there for him ? To help, to explain, to  understand ? We always wished for a sibling but that will never happen sadly , so it’s Danny alone. That’s why we have to work so hard at getting all the help and support for him now so in the future he will hopefully have the support he needs when we’re gone.

At home we began to learn how to be a family and what it was to have a baby. I loved every moment, having mental health problems all my life i knew post natal depression was kicking in thankfully I had my meds adjusted and managed to keep going. Although it was hard.

7 months old I started raising some concerns with my health  visitor. Explaining the state Danny got In when I changed his nappy or clothes or tried to bath him, how when he was settled then became increasainly upset when people were talking, how he would lie in his cot and  scratch the wall, how he wouldn’t look at mummy and Daddy and give us the much awaited babble that you see babies do, how as he grew he was later than his peers at sitting unaided, walking .

It took so long till one of the health visitors listened and agreed then referred him to the child development clinic. In the meantime I took Danny to private therapy as he couldn’t talk and they said he might not, every week I made the long journey and after a few months he said his first work “bubbles” to finally hear my son’s voice was amazing. A day I will never forget. From then I realised Danny learned in a different way, it was going to be a long fight, but I was determined I would fight for what he needed, anything that made his life easier and better I’d be fighting for it. For as long as I live.

Our son Danny was born by c-section , from the moment he was lifted out he grabbed hold of the surgeons surgical tools and wouldnt let go, screaming his lungs out !

Daddy gave the first feed and cuddles as I wasn’t able to move for a while. On the ward Danny continued screaming, the nurse took him to the nurses station  overnight to try and give me a rest. Two days later the nurse came to help us bath him. Again  Danny screamed the place down when she gently poured the luke warm water over him.

“I’ve never had a baby hate water as much as this ” she said. ” or scream as much as this ” she said.

I knew in my gut from that day things were going to be different for our perfect little family. After 4 days we were finally allowed home.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton